Tag Archives: autism

Providing A Compass

Podcast Episode 79 Sometimes we need to change direction quickly and find the right information so that we can make an informed decision as to which road we need to take. This week’s guest Kerrie Highcock helps provide that information. Kerrie is the Family Development Manager at North East Autism Society, and her role is not only to provide support but to help people identify where to find information that is useful for their particular situation.

Kerrie talks about the importance for anyone who has been diagnosed with autism, and their families, recognising that they need support; but it does need to be the right kind of support focused on the positives, not treating autism as a negative in someone’s life.

Kerrie also talks about the need for everyone to move away from awareness and understanding to acceptance. She also talks about the importance of listening and learning from the young person who has the additional need, finding out what they want and for them to be talking to each other because they understand the challenges more.

After all we all need to ultimately be in charge of our own journeys and for some people they need a facilitator more than a carer.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 79 of the Journey Skills podcast. It’d be impossible not to mention what’s happening in the world right now which is changing our lives right this moment and I suspect will be for quite awhile in the future.

I sincerely hope anyone listening back to this episode later in 2020 can reflect on how we got through this by sticking together, supporting each other and I would say to everyone, please stay safe.
My plan is to keep the podcast going as usual and share stories from amazing people. And I know maybe you can’t access some of these solutions for your young person right now but they are there and they’ll be there when the world is able to open up again.

Anyway, this way I’m talking to Kerrie who works at the North East Autism Society which is based in the UK. Kerrie talks about a few issues including diagnosis, about getting the right support, thinking about where you get information from, which is also great advice for where we are right now in the world.
We also talk about moving on from awareness and understanding to acceptance.

And this message obviously doesn’t just apply when we’re talking about autism. This is for everyone who is involved in helping young people with additional needs because really what we all want is.. or any of us want is actually to be accepted. And as part of this idea of acceptance, Kerrie also talks about the need to be more focused on listening and learning from people with autism. And again I believe that applies across the board because even as a parent, it’s not who has to deal with the challenges that my daughter faces, it’s her. So she needs to help drive the solutions that will give her the life that she wants.

Given the world that we are part of right now, it’s really perfect timing to be minded- people that Kerrie out there– making a difference, providing those much needed directions and support when you need them at the right time.

DEBRA: Today I am talking to Kerry Highcock who is the Family Development Manager at North East Autism Society which is based in the UK. Welcome Kerry!

KERRIE: Hi, Debra. Are you okay?

DEBRA: Very well, thank you. Can you tell me a little bit about yourself and also about your role at North East Autism Society?

KERRIE: My name is Kerrie. I have worked in the autism field for around 18 years now. I started off as a nursery nurse many years ago working with little people and then I did my degree around special needs and education and I have just finished in
December last year my masters in education in autism. So I’ve been around in the field for quite awhile. And I’ve been here at North East Autism Society for 12 years now. And my role is very much about supporting families across every diagnostic journey really, so on pre, during and after diagnosis, mainly a lot of times, me and the team get involve is after diagnosis because as we know families get that piece of paper or they get that official diagnosis and then they’re not left with very much information. So a lot of my role is about managing a team and we’re quite a small team actually. Around kind of post-diagnostic models of support so we run parent-toddler groups, we run family support groups which is so important to bring families together. We also do some parenting workshops as well around, you know, just around the introduction to autism really because obviously you know if you get that diagnosis for your child and then you’re left with this word and you’ve never come across it before, well what does that actually mean to you and your family. So we do a lot of that as well. Our team is also responsible for a lot of inquiries that come into our organisation. So North East Autism Society as a whole is quite a big organisation. We have over 800 staff I think at the last count and all the 40 different sites. So we are quite big. I suppose my team within that is relatively small in comparison maybe to our education services, etc. But the work that we do is obviously vital for the families that we support.

DEBRA: Could you just really talk me through then…a lot of people that listen to this will not be at that stage of their journey where they’ve just been diagnosed but what are some of the biggest challenges for parents then when they first get their diagnosis? Because you mentioned there the word ‘autism nobody really knows what does that actually mean’. What do you help them at that very early stage?

KERRIE: I think what we do is we obviously offer a lot of emotional support because if you’ve just got a diagnosis for your child or your adults of course, it can be really frightening. If you’ve got just a diagnosis for yourself so we have some adults that come to us relies of that, just got a diagnosis themselves also. I think it can be really frightening and you would think you know “where do I go, what do I do next, who do I get involve.” So we kind of help them navigate really through the system. It isn’t always an easy system to navigate through. We will find them the right support work possible so we do a lot of signposting on those early days. We also upskill and educate the parents `as well which is really important because we’ve got a lot of misconceptions and myths out there about what autism is and what it isn’t. And a lot of it is very negative so the first things that parents will often hear is negative things about their child. I have a lot of parents that will come to me, they’ll say “Well, the professional involves said about this all autistic is never gonna be able to achieve much in life. Well actually that’s not accurate at all. Your child is unique and they are different for who they are. And you know, what are their needs is to support them just like any individual needs support in different elements of their life.

So it’s absolutely about getting rid of some of their early misconceptions that’s really important for us to make sure parents have got the right knowledge at the right time. And then navigate them through the system, really would any difficulties that they have and often we get kind of categories I suppose of difficulties in the early years or in the primary school years, it’s often around kind of toileting and eating differences, behavior. Things often manifests behavior would actually it’s our job to help parents on pick that behavior rather than label each children naughty or disobedient or non-compliant. We actually need to look at what’s going on for that child or that adult underneath the surface of that behavior. And that’s a lot of what we do. So we’re just really that guiding friendly face really in a world that can be really terrifying for families and of course for the children and the young people themselves or the adults that have just got that diagnosis. A lot of work needs doing there around that, too, I think.

DEBRA: What are some of the unique challenges then if you’re an adult and you’ve just been diagnosed apart from the stereotypes that you’ve mentioned where people assume all `these stupid things, what are some of the other challenges that you find that adults that you’ve dealt with have faced?

KERRIE: I think again that unique adults and to parents I suppose as well is just knowing where to go so as an adult getting a diagnosis, you know, we’ve had phone calls from adults that have just left the clinic and have said, “Look, I’ve just been given this piece of paper and they say I’m autistic. What does this mean and what do I do next?” So it’s about supporting them through that journey. But also, you’ll get adults that have known their whole life that they have been different in some way but they’ve not been able to put their finger on it and for those adults, it’s actually that moment of clarity for them, they’ll get that diagnosis and at last, you know, everything makes sense in their life so we support them around that as well.

A lot of the times, the challenge in around that is actually picking up the pieces because if somebody has gone through their whole life without the right diagnosis, therefore, they’ve not got the right support and the right help, these are often are adults that are then that have you know mental health crises or you know they might have experienced a lot of trauma in their life because maybe they’ve been maybe in the wrong educational settings, things like that. Sometimes, it’s more that support to sign importance to the right mental health services, even though we know autism isn’t a mental health condition. You know it doesn’t kind of fit with any of the specific limits of your life. I suppose a lot of it is trying to piece things back together for them.

I think one of the things as well that seems to be case, the work that we do is getting autistic adults in a room with other autistic adults– that is where the power is because they have that unique neurology. Therefore it makes sense to learn from other autistic adults. I think that is key and I think we all need to look from that the fact that we need to be learning form autistic people, not just so-called professionals that think they know all stuff about autism. I think that’s key.

DEBRA: When you’re talking about the fact that people unlike diagnosed, just wondering whether some people think of themselves “I wish I’d never been diagnosed because now I’ve got extra challenges and all those extra stereotypes.” Does that happen as well?

KERRIE: Probably just happen but I have to be honest, in the experience that I have with adults, it’s usually a relief because I think… (and I think you’ve got a total valid point, Debra. and I’m sure that does happen) but I think the people that I come across are actually relieved because at last, somebody has started to give a label (if you like) to all that stuff that they’ve done that hasn’t made sense over the years so all of the sudden they can start learning about themselves, and you know, understanding “Well, yeah, do that for a reason and actually you know what, I’m not broken” Because so much of what we know about autism, like I was saying, is driven from a very deficit model. So, you know, initially, adults that are diagnosed will be thinking, “What’s wrong with me, what’s the problem with me” and it doesn’t need to be about that. It’s actually autism is just different neurology, it’s often society that disables our autistic adults and autism people.

DEBRA: Yeah, I totally agree. I mean, I was just thinking that some people that because of the negativity around the word, because of people thinking that it’s a bad thing to have autism as opposed to ‘Oh, great! I know now why I do this certain things’. With adults, do you find that there’s more men or women that come that are diagnosed at a later stage, is there a difference in numbers?

KERRIE: I think particularly in, you know if I look at the people that I work with, there is slightly more males that I work with particularly, but that doesn’t mean that females aren’t autistic. I think that’s a really good point because we still have some people out there that genuinely believe autism is a male-based neurology and that’s not accurate at all. I think what was starting to see now is that girls.. males and females first of all, we need to mention wores masks so they’re both socially camouflage, they’re autism if you like and they’ll do things to stop them being autistic and they work really hard to do that. And that can be mentally draining for both genders.

I think what we also know is that girls might fit in a bit easier so they tend to be better at mimicking social cues from other girls, so what they’ll tend to do is they’ll copy, you know, a girl in the class and they’ll do everything that they’re doing because that seems like normal behavior (whatever normal behavior is, we don’t know). I think one of the great examples somebody works in NEAS, a teenage girl may collect all posters of their favorite pop icon and stick them on the wall and they might have millions of posters on the wall, now that’s okay because that’s something girls generally do but if you’re a boy and you collecting (I don’t know, not to be stereotyping) trains for example and the line to fulling your room then that is perceived quite differently, that’s then ‘Oh goodness, this is an obsession and what does this mean for this person’. So, I think as well, we’ve gotta remember a lot of the literature from the early years, you know, the historical stuff was all based on males also so a lot of this stuff that we read has got that gender-bias. But we absolutely have to get rid of these ideas that girls can’t be autistic and that only girls mask because that’s another misconception that seems to be coming out a little bit. People are saying, “Well, the reason girls are misdiagnosed is because they mask a lot”. Well, absolutely, they do mask a lot but so are boys/males mask also.

DEBRA: So again, it’s about stereotypes, isn’t it?

KERRIE: Absolutely, yeah! It’s all stereotypes.

DEBRA: In terms of parents looking at.. it’s difficult because you obviously work with such a diverse age group, but if you had to break down some sort of tips for parents because a lot of people won’t be able to access your services, is there some sort of very general I suppose tips that you’ve thought over the years that parents really should just know straight away? One of them as you mentioned about autistic people getting together with other people and learning from each other, but are there other things that you would say, ‘This is definite, you must do this’?

KERRIE: One of the big things is being very aware of what you reading and where you’re getting your information– from what sources are you actually using. Because you’ve only gotta do it quick search on Google and some really horrendous stuff comes up. I mean, just at the weekend, there’s been a video pushed out again about bleach being a cure for autism which we could spend a whole hour discussing that but that’s barbaric in itself. So I think parents need to be aware of the sources they’re getting their information from. Make sure they’re credible. Make sure, you know, they’re written by autistic people were possible also.

And also, I would say try and learn from your child, young person or adult. Just observe them for a little bit. Try. And I know life is busy but try and take time out of your busy day just to watch them and try and see the world from their perspective. You know, what is it that’s really making them happy, what’s making them distress. Because often, with our children and adults, it can be the tiniest things that make the biggest difference. So try and take 3 steps back and look at the world through their eyes, I think that’s really, really important.

You know, in terms of working through the system that is very complex to navigate through, write things down, have a folder, have dividers in education, health, social, care, whatever it is. Keep all your notes. Keep everything together so that you can go back and use anything that you need as evidence.

And enjoy time with your child and your person, you know. Be around people that really value your child because I have a lot of families that will come to me and they’ll say you know, “I’ll go and visit Auntie Mary at the weekend” for example and they keep saying, “Well, your little boy is naughty. You should be doing this and that, you abide this time” Well, you know what that’s not a really helpful mindset for you to be around, so sometimes, our parents however difficult it is, will distance themselves from other family members because, you know, you wanna be in that positive mentality as well.

I think support groups are really, really useful. I think there’s an absolute plays for support groups and we run them here at North East Autism Society but I think sometimes, they can be complacent it’s worth, there’s a lot of negativity as well and for some people that you need to be in a different mindset because if you just stalking that cycle and negativity, it doesn’t do anything for your own mental health. So, I think choose who you around, where you’re getting your information from, I think that’s really key.

DEBRA: Can I finish on a positive note and ask you if you think things are changing? Because I feel they are changing in terms of people becoming.. awareness has certainly grown, but I think also understanding is getting better.

KERRIE: Yeah, I think we’re making big shifts. We have a long, long way to go but, you know, particularly here we’re getting gearing up for Autism Acceptance Week in April. So that used to be called Autism Awareness Week, we now call Acceptance Week because what we’re actually talking about now is you know, it’s okay being a little bit aware at things but you need to do something about it and that’s where that acceptance model comes in, really. So I think we have more and more autistic adults that’s out there that are able to use their voice in a meaningful way and I think that is okay. I mean, you know, I was saying I’ve done my masters in December and graduated and I do my dissertation last year and it was with young autistic people between the ages of 10 to 16. And what we did was we gave them a platform to say what do you want to say to society about autism. And that was incredible! I mean, there’s the insight these young people come back with was just amazing.

From that, we, as an organisation had been able to develop 3 more autism activist groups for these young people. You know, the topics they’re talking about, Debra is around social isolation, it’s around bullying, it’s around mental health, it’s around feeling you know like you wanna engage in self-harming behavior. So it isn’t all nice topics. It’s raw, real stuff that means things. You know, that is vital to them.

And I think we are getting better at listening but we need to keep going with that and we need to you know shoutout to all professionals that work in the field, (you know, I’m a professional working in the field) but we don’t know everything. In fact, we only know the tip of the iceberg. If you spend some time with autistic people and listen to what they’re saying, I think that’s where you gain your knowledge. That’s where the magic happens. I want to encourage any professional working in the field to have that real open mind and you know, autism isn’t something that you read in a textbook in 1960. We gotta be open and fluid to new ideas and you know new thinking. And listen to autistic people. That’s the important thing.

DEBRA: Kerrie, thank you so much for your time.

KERRIE: Thank you so much for having me.

DEBRA: Key takeaway– It’s really about acceptance which is much better than awareness and understanding. And that’s what we should be aiming for with our young people.

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Getting Ready For Work

Podcast Episode 76 For many young people with additional needs finding a job can be incredibly challenging. It takes planning and for most requires them to go way outside their comfort zone. This week’s guest Dr Michael Reiter runs work readiness workshops and he talks us through the three areas he focuses on to help the emerging adults in the group find and keep a job.

Michael talks about the importance of setting goals and making sure these are SMART as well as identifying the types of jobs a young person might like to do but also has the required skills to do. He discusses the interview process and the fact that as much as this is about the practical things like being able to answer questions it’s also about the ability to manage your own anxiety. Interviews are stressful for most people so ways to help manage that stress, so you still are able to perform at your best is a key part of finding work. Finally he discusses how they address the after you have the job issue looking at the social skills required in a workplace and how to manage those.

Michael talks about the need to have realistic expectations around work but for the emerging adults he works with using this approach he is actually providing them with a realistic change of finding and keeping a job.

Getting a job for our young people will probably never be easy but by helping them prepare properly, using a model like this, and giving them greater autonomy to plan their own work future we are helping increase the probability it will happen one day.

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Podcast Transcript
Debra: Welcome to Episode 76 of the Journey Skills podcast. This episode our topic is all about work. I’m talking to Dr. Michael Reiter who runs a work readiness group. I came across Michael via Main Street which is bringing housing project and I spoke to Jillian from Main Street back in Episode 60 and Michael’s group was mentioned in the Main Street newsletter as an example of resources available in the area. Now obviously most of us can’t access to groups like this but I reached out to Michael because I thought he might be willing to share some ideas. And to be honest, he pretty much shares his blueprint for what to cover in a group like this.

He placed the work readiness group downing to 3 areas; the first is about goal-setting — finding out what young people want to do using SMART goals. We already do this a little bit with our own daughter in helping her set goals (or be it just for the week) but just to give her an idea of what to do and how to do it because we do it ourselves. The second thing that he covers in the group is interview preparation. Although he talks about in terms of actually alleviating the anxiety that going to an interview can bring so it’s all about managing that sort of anxiety.

I’m kind of hopeful in some ways that this issue might actually become less of a problem in the future because there are now many companies that understand that face-to-face interviews aren’t going to help our young people, not going to showcase their skills, and certainly not show what they are capable of in the actual workplace. But saying that, most of us will still need to help them out when it comes to preparing for an interview at some point.

And the final part of what Michael talks about is after getting the job is staying in the job. And that’s the big challenge. This really is a big issue and to use a cliche, It’s a game-changer when you have in place support for employers. And most successful employment programs I’ve seen such as the one that Team Domenica runs (which we talked about in Episode 45) inclusion element of employer’s support on the eyes on of the employees in some ways. And it provides that extra step and keeps the young people in their jobs which is what we want.

So Michael talks us through those 3 areas in terms of how he works with the young people in the group. The other thing that I found that really interesting in my conversation with Michael is the way that he uses the term ’emerging adults’. I actually never heard anyone used that term before. And it’s a term I really like because I think it kind of sums up what all about our people young people go through. They take a bit longer to get things, they take a bit long becoming to adulthood. And the idea of an emerging adult — it just kind of resonated with me.

Michael talks about a few resources and I’ll put those in the show notes. He talks about The Holland Codes Test, he talks about the Occupational Outlook Handbook, and he also talks about Stages of Changes. So these things are those in the show notes if you wanna have a look and find out a little bit more.

Debra: Today I’m talking to Dr Michael Reiter who is a Licensed Psychologist based in Maryland in the US. Welcome, Mike!

Michael: Thanks for having me, Debra.

Debra: Can you tell me, first of all, a little bit about yourself and then also about what we’re going to talk about today is actually something you do called an Employment Readiness Group.

Michael: Sure, happy to do that. I’m a clinical psychologist and I practiced just outside of Washington, DC. I received my degrees from The George Washington University and my training background is generally in family systems and cognitive behavioral therapy. And generally, I work with teenagers and emerging adults who are struggling with navigating their next steps. This could be while they’re in high school or post-secondary, some of my clients have gone off to college and they’ve returned home and are regrouping, some are yet to leave the nest. They’re often underlying challenges that are contributing to why they’re having a hard time moving forward. Some of those could be anxiety, social anxiety. I see a lot of OCD, depression, executive functioning challenges such as ADHD. I do see some clients who have autism spectrum disorders or challenges with social cognition, social communication.

In terms of how I came to working on developing this group, over the years I’ve worked with a lot of young adults who struggled with navigating the employment world. Thus, I want to put a group together that help them navigate the employment process but also addresses some of the underlying issues that might be getting in the way of them moving forward. So in some ways I think about this group as a therapeutic employment group which is a blend of vocational rehabilitation and supportive employment curriculum with cognitive behavioral therapy and also helping participants understand employment world as a social world and how to navigate it.

Debra: Can you just talk me through then what you do with the group? Do you have a schedule of I guess workshops that you run through or people just come along and you talk about issues for that particular person? Or how does that actually work?

Michael: Well, when someone will call me and show interest in a group, sometimes it’s the parents of the emerging adult and I’ll invite them to come in front and take appointment. So, just be one meeting where we get to know each other a little bit and I get to learn more about what their goals are. At that point, we decide whether the group seems like be a good fit for them or not. And at that point, I also assess if there are other supports in the community that might be more appropriate for them. If it seems like the group is a good fit, then they’ll sign up and it’s a 15-session group, we meet twice a week for about an hour and a half each meeting. There’s a parent meeting in the beginning of the group, that’s to orient them to the curriculum, answer questions they have about the group and most importantly so they can ask questions and we can talk about how they could support their emerging adult in the group. I think all parents are eager to help their young adults in the process and find it hard to know how to do so. And they’ve tried to work together in the past and sometimes that works well, sometimes it doesn’t. So we talk that through at that time. And also, I think them knowing that we’re gonna be covering certain topics here helps them feel more relaxed at home that we’ll be working on some of the goals that they’ve been trying to do at home on their own. Parents also get offered a meeting at the end of the group where we can provide feedback to them and talk about the next steps and come with a plan for what the participants will be doing later on.

I’d loosely break up the group content into (of the fifteen sessions) into three categories; the first third of the group is geared more towards goal setting, self-exploration, and being prepared for the application process. I’d say the second portion of the group focuses on anxiety management, interview prep and practice which is important for a lot of reasons including exposure, facing our fears, getting feedback from your peers. The third portion the group is geared more towards social communication at the workplace, so managing difficult situations, communicating with your coworkers, with your supervisors.

So we start off with SMART goals which are basically goals that will orient everyone to what they wanna accomplish during the course of the group; their specific, measurable, achievable, realistic and have a time frame associated with them. We talk about what those are, people do worksheets and bring them back in for the next meeting. And then we learn how to.. we take a Holland codes test. We learn how to do that. It’s a vocational career interest survey and we use the Holland codes results to guide us through what’s called the Occupational Outlook Handbook. That’s basically an encyclopedia that the Department of Labor and Statistics in the United States has which gives a listing of job occupations and vocations and what those jobs do, how much they get paid, how do you get that job, what kind of training do you need, and also some more occupations. So really is a self-directed job search. So it’s interest-oriented, you’re not telling someone “Hey, this is what you should be.” This is more of “What your personality type looks like would fit for you in the future, now let’s go search some more”. So we started off with that. We do some worksheets on the benefits and costs of work which gets us to the motivation for wanting to work.

We talk about stages of change where is everyone in their stage of change. So the stages of change are pre-contemplation, contemplation, action, maintenance, relapse and it’s an interesting conversation to have. We discuss our vocational supports so those referred to our family to maybe outside supports, coaches, therapists what are the aspects of support that we need, what are the aspects of support that we don’t need as much, how do we communicate those needs to those around us. We learn about stress and coping with the process, how do we manage stress, we call that The Stress Tolerance. We share our strategies, we discuss new strategies that might be useful for the process of looking for work. Looking for work as a stressful process and if you’re struggling with mental health issues or disability it’s even harder, so it’s a really important conversation. So, so far this first third of the group is getting us ready and prepared for the process; orienting ourselves to what we want to be doing or what we want to be looking for.

And then we do a little more hard skill development. We spend some time in resumes and cover letters and talking through tips and strategies for organizing the search. We do a lot of peer feedback at this point. We talk about the application as a social engagement. This is something that I think is really important. Well, a lot will think, we think of applying for jobs as you just like find that online and then you click on that and you submit and you wait to hear back and that’s maybe the first step but after that, you have to start talking to people, whether it’s through email or through phone calls or in person. And we have to like really navigate this process as a social engagement and I think that can be really scary and a foreign world for a lot of people and that’s where I think people tend to get tripped up sometimes. So a lot of the group really focuses on demystifying that and helping people understand what the steps are and managing the underlying issues that been getting in the way of that. So I’d say that’s the first third of the group is focusing on orienting ourselves and setting goals, coping with the process and getting our resumes and ourselves right need to take that step.

Debra: Can I just ask a quick question about that. Do you know you think that often young people who have additional needs are not very good at setting goals. They’ve never really thought about setting goals because I think it’s a hard thing to do anyway for most of us, but, do you find that that’s something that they find particularly challenging — setting goals about what they want?

Michael: Sure. I think it’s very hard. I think that that’s one of the struggles that I notice happens when someone comes to the group, they had a hard time with setting their goals and not achieving them and then it feels like the goals are unachievable. So part of this is helping individuals learn how to set realistic goals and to break them down into smaller steps that are more achievable. But we’re talking about working with young adults who may not actually know what they want to do and that’s okay. So I think that it’s okay to not actually know what you want to do and maybe the goal is just to get some experience and part of this is also expectation management. It might be that these emerging adults who are coming here or anywhere else are thinking, “Oh, I need to have my career lined up. I need to know what I wanna do” but that may not be the case, it may not be realistic. So I think that sometimes we need expectation management.

Debra: Can we talk a little bit about the parents because I think that’s an interesting thing that you mentioned before about you support the parents as well and that that to me seems a really essential, doesn’t it? The parents have to be kind of on-board and helping the young person at home but you did mention that often parents don’t know what to do. What are some of the tips you would have for parents just in a general sense of being able to help their young person with some of the challenges?

Michael: Yeah, it’s a good question. It’s a hard question to answer a little bit but I think that one of the things that I would suggest is to think about autonomy. I think that sometimes the parents and the emerging adults that caught up in a sort of power struggle about the process and moving forward. And are trying to help but that help isn’t necessarily coming across in a positive way even though it’s help that is needed or maybe wanted by the emerging adult. I think it’s important for parents to think about how they can support their young adults without it feeling like they are telling their young adults to do something. So how do we support our emerging adults without undermining their own motivation. And all the people who are coming to the group are motivated to move forward but then what’s going on at home that might be undermining that and I think being transparent about that motivational process or undermining motivational process that’s going on with parents. Here we have that discussion about self-determination theory. That’s the theory behind it and I talk about it with the emerging adults as well and we try to come together so everyone can understand what people’s intentions are in the ways that they’re trying to support each other. So, I think for parents to be mindful of how their support comes across is important.

Debra: So the first step is the setting of the goals, and the second is the..you said the process of how you apply. Was that right?

Michael: I’d say the second section I would loosely put into a category of anxiety management and interview practice. And I would say this is maybe the most important piece. Once you have the foundation of what you’re looking for hence, coping skills in place to navigate and to start the process, you really have to manage the anxiety associated with the actual process of looking for work. It can be really stressful. I hear a lot that sitting down and looking for a job, figuring out how to answer questions on application, aside from the actual interview and meeting people and communicating and knowing what to say can be really stressful. So I take very much a cognitive behavioral therapy approach which we learn about our anxious thinking styles, we learn about positive self-talk, cognitive thinking ways to use self-talk to work through these stressful applications and the process, we learn about avoidance variables. The whole group itself from beginning to end is an exposure because you’re forced to face the idea of looking for work.

But this section here really talks a lot about exposure and facing your fears because when we have anxiety, whether it’s the primary issue or it’s a secondary issue, and by that I mean someone might have social anxiety that’s a reason why they’ve had a hard time with the process or maybe someone has ADHD and they’ve had a hard time engaging the process because of executive function challenges but because of that they’ve developed some anxiety about the process. Whether it’s primary secondary issue, it could be a lot of anxiety and which creates avoidance and then we need to learn how to face that fear and the group really teaches individuals about that process and we start to practice it. So it’s an anxiety management aspect here where we’re learning about how to manage anxiety and stress.

And then we practice interviews; we prep for, we dress for interviews. Everyone comes in, we do it a few different ways so we can try to get different experiences. The first what we do is we use actually Zoom video conferencing and I have someone in one room interview with a stranger, in the other room the group watches the interview and afterwards everyone is able to give feedback on the interview including the person who is conducting an interview which is very unique. Often when you have an interview, you don’t understand or hear any feedback to why it didn’t work out. So this is really important.

Then the recorded interview is sent to the participants so they can review it themselves and I also review it and give additional feedback later. Then we also do in-session practice where we pair up and interview each other and the group watches and then we also do fun practice where we call each other from different conference rooms. So we do in a variety of ways all which are targeted towards giving feedback. I think it’s a really important aspect of the group so that helps a lot with the anxieties.

Debra: Because it’s interesting you say that because it’s a little bit of a move I think for interviews be a little bit different because some people really find it a massive challenge to go through that very, I suppose, systematic process of sitting down there, answering questions. So there have been a number of companies haven’t there that talk, that do something slightly different to give people.. because you do not always see skills, do you, in an interview with them sitting and answering a question if they’re not very good at answering questions?

Michael: That’s right. It can be very hard. Yeah, we talk a lot about the difference between soft skills and hard skills. Sometimes I think some people tend to lean on their hard skills, sometime in interview answers sometimes they lean on their soft skills. So we talk about how they can help describe what their abilities are.

What we do is we have people research a job that they want to apply for or they’ve applied for and they do the interview for that job and then when we do it practice interviews again we actually interview over and over again for the same jobs to really refine that skill set.

Debra: And so what’s the final third then?

Michael: The final third focuses more on this idea of once you have a job, maintaining work; workplace communication, healthy work relationships, self-advocacy. So in the last portion of the group, we talk about handling difficult conversations with peers and supervisors, how you might manage workplace conflict, boundaries at work, social skills in the workplace. We talk a little bit about workplace accommodation, so how you might qualify for those or ask for those at the beginning of the process or once you are already employed, assertiveness. So that’s the last third of the group.

Debra: Because that again, that’s quite interesting as well because a lot of people will get a job and then they won’t actually keep it, will they? Because they can’t deal with the day-to-day challenges that work brings.

Michael: Yeah that’s true. That’s where someone might benefit from ongoing supported employment so our long-term support. And that’s something that the group doesn’t have which is the group I think has a lot of benefits. One of the benefits of the group is that you’re with peers and if you’re with peers then there’s accountability and I think that’s the important piece of being in the group. I think that one of the downsides of the group or any group is that you don’t have the ongoing individual support afterwards. I think that the model of having a group such as this combined with individual support, whether it’s from parents (this is why we involve the parents in the process afterwards or family members or if it’s a job coach or an agency that’s working with the individual) to continue the support that you’ve already received. And there are a lot of supports available at least in our area here for individuals with disabilities. The unfortunate thing is that there’s a service gap. Sometimes the individuals who are struggling don’t meet the requirements or their disability isn’t significant or severe enough to be eligible to access those services.

Debra: Do you have any sort of success stories that you could share with us?

Michael: Yeah, I can’t get to specific but I do think that we’ve had… this past group, we had some success actually about 75% of the group went on by the end of the group had a job, full-time or part-time. And I think that part of that was due to the accountability factor in the group. It’s one thing to be accountable to a parent, therapist or coach but I think it’s different when your peers are doing something that you’re supposed to be doing and you know you have to talk about it with them in two or three days and also getting the feedback and having that peer support of knowing others are having the same struggle.

We did have successes this past round in a group where individuals got their jobs of choice that they wanted to. And I think that had to do with also being realistic about what they’re qualified to do and being motivated and wanting to do it.

Debra: What do you think has been the biggest challenge for the young people that you’re helping?

Michael: I think for me, one of the biggest challenges was working through the group topics and curriculum while also tailoring to each participant’s needs. The group is the group. So if someone is able to continue to pursue looking for work on their own without additional individualised support, then that’s great but they’re not. And they need that support then it might be a little harder for them. So I think that the challenge is having a comprehensive support for individuals who need that support and pulling that together so having a team really for the person.

I think that in general the challenges that I see are the emerging adults understanding how to navigate the future. I think that when you’re in grade school and high school, the world is basically organised and structured and given to you. Here’s where you have to be from 9-5 or whatever your school hours are. You know, here are friends, here are your social activities, here’s what you’re doing before school, after school, you have to wake up and go. And then when you go off to college and to work, these supports slowly get peeled away and how to do it on your own becomes more and more foreign. And if you have social anxiety or if you have a social, communication, or cognition challenge such as autism, then you’re really like in a foreign world and you just don’t understand how to navigate it and I think that’s where the challenge really comes into play. Then that’s really the goal that we have here to really try to be a part of the process of helping that out.

Debra: Michael, thank you so much for your time.

Michael: Thank you for having me, I appreciate it.

Debra: Key takeaway– For me personally it was to listen more and to empower my daughter to think more about her own future; to help her take ownership or as Michael says to have more autonomy in deciding what she wants to do in the future.

Dr Reiter’s Group
The Occupational Outlook Handbook for self-guided career interest searching
Holland Codes Test
Autism Speaks Employment Toolkit
Stages Of Change

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Planning A Future Without You

Podcast Episode 75 If not now when? Planning for the future can be scary for anyone but it’s especially hard when that planning is for a young person who we know will face any number of challenges as they navigate towards their ideal life.

In this episode Carol Wakeford from Heartventure shares her story about how she and husband have planned and then worked towards providing an independent future for their son. Carol talks about the original idea she had of starting a dating agency and why that original model didn’t work and how it has now transformed into a different model which provides not only a social life for her son and his friends but also helps to break down barriers and build wider understanding in the local community.

Carol also talks about independent living in terms of how to create a supported living house for young people. She discusses the practical challenges of making it work and how to find the right people to work with.

Planning for a future, we won’t always be a part of, isn’t ever going to be easy. Planning though can not only provide our young people with the security of realistic options it can provide us with peace of mind and help us stop asking what happens when I’m no longer around.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 75 of the Journey Skills podcast. This episode is all about planning for the future, it’s also about thinking about the future where you won’t always be around to help with that planning. I spent quite a lot of time thinking about the messages in this episode and honestly keep coming back to something that I think most parents of a young person who has additional needs think about quite a lot. It’s a really important question. It’s very, very, very scary and it needs to be dealt with sooner rather later, and that’s the question of what happens when I’m not around. And like many families, we have an extended family, my daughter has a sibling, and I know that they would always be there to make sure she was okay but should I have to do this? And more importantly, would she want them to do it?

And I think the answer is no. She wants her independence. So I see my job, in part, is to help her build the life that she wants. And of course, it’s partly selfish because once the question of what happens when I’m not around is answered, and I can enjoy some time watching her live the life that she deserves.

So I’m talking to Carol Wakeford about how she and her husband have gotten their son, Daniel to living a much more independent life and one that he can sustain when they’re not around. We talk about relationships and we also talk about housing. Relationships because you’ll hear Carol started a dating agency called HeartVenture and should explain why the original idea around the dating agency didn’t work and how it is moved into something different and something that works really, really well. And she also talks about supported housing and how Daniel now shares a house with friends, how that works, some of the challenges of getting it up and running. And I think she does a very good job of reminding us that so much is possible. But it isn’t easy but I think we’re all up for the challenge anyway.

So it’s all about future planning and helping our young people move away from us because like it or not, they need to. It’s the right thing for them and it’s the right thing for us. Scary? Absolutely! But the right thing to do.

DEBRA: Today I am talking to Carol Wakeford from HeartVenture. Welcome, Carol!

Carol: Hi.

DEBRA: Can you tell me a little bit about yourself first of all and then all about Heart Venture?

CAROL: Yeah. Well, I’m Carol Wakeford as you say and I’m married to the wonderful Barry Wakeford and we have a wonderful son called Daniel Wakeford. And Daniel who’s been autistic all his life obviously. We realised at about the age of.. I think it was round about 18 months really and took a long, long time to get a diagnosis. Then he got the diagnosis and fought where we can go from here. We did all the school years and that’s really great because school there, they’re all in compensin, they take over social life for them. Everything works around school and then basically they leave school and everything comes to a bit hefty halt.

So, we kind of “Okay”, looked at each other and thought, “What can we do?” So, we tried a couple of places to Daniel, residential places because I firmly believe that all children should grow up and move on. They need their lives and we need our lives and we tried a couple of places; one was very good but only for a short term and then we tried a smaller supported house which we thought would be ideal but actually we soon realised it wasn’t. So, we got talking to people that we’d work with throughout the years and we all felt we could do a better job. So, we thought, “Okay, let’s do it!” So we put together our own supported living house 7 years ago for Daniel and we built it up now to.. there are 5 of them now living there and now Daniel and Lily will be getting married next year so there will be 6 of them. And we just built an extension on to accommodate that.

But it was whilst we were doing that, that we’re also talking to people and realised that there wasn’t enough around them being able to socialise and form relationships, help people to form relationships. So my friend and I got together and we’ve thought, “Wouldn’t it be good if we could do a dating agency originally with our idea, our plan for adults with learning disabilities. So we’ve set up HeartVenture but unfortunately, within I say a year to 18 months, we realised that it was not going to work because we had over a hundred male members on our books and only 3 females. So we tried everything; we went rounded presentations at various organisations but unfortunately, we just couldn’t get any more females to subscribe. So we had to end that side of our organisation and we realised that while this was going on, the events which we were only going to do every so often, were very, very popular. So we got them then organised to once a month minimum and actually through the events, we’ve had several couples pair up.

So, we just decided we’re wasting all our time and efforts and resources into something that’s not going to work. So let’s do something that does work and so that’s what we do now. We run HeartVenture. Every month, we do disco karaoke night at the local pub and that’s really come on. It kind of worked organically. In the first place, we had the events room for the disco and people will come along. We did that for about 6 months (I think we were with that) and then Wednesday, they had one night, a karaoke going on in the next bar. And one by one, our guys could this and they started gradually going into the next bar and joining in. And it was a fabulous night. And the landlord ran me a few days and said “All the locals can’t stop talking. They loved that night and could they bring some guys along to the next karaoke night which we did. And then, he got back to me and said, “Look, it’s such a success, what about if we do once a month on a Tuesday, we have the disco in the events room and they have the karaoke in the main bar and we open all the doors and everybody can just wander around freely.”

And it’s been a huge success. So we’re very proud because it isn’t just about a night for adults with learning disabilities, everyone comes along; the locals, everyone, and it’s just about breaking down those barriers. And the thing that brought it home to me was PJ that was doing the karaoke at the time said that when he was first asked to step in and do the karaoke because he was there the first night, and was asked to do it the second time, he was dreading it. He was trying to think of ways to back out and he did it and he said he had the best night in his life. Thought I was gonna come along, there were people rocking and screaming and really weird behaviour and he said, “They were the nicest people I’ve ever met.” And that is just is all, doesn’t it? And now, as I say, it’s a regular event. PJ’s there, most mums, and we all know each other and it’s the busiest any pub would be I think on a rainy January Tuesday night.

DEBRA: You think it’s as simple as that then? That sort of simple thing; just breaking down the barriers. Suddenly people change their perception.

CAROL: I think it is and I think you can organise it as much as you like but it doesn’t kind of work that way because then you only get the people participate that really understand that in the first place. It has to be gradually, gradually get those people in which is how do you do that? I don’t know how. I never plan that. It happens. We’re always thinking how can we do that again? I don’t know! I haven’t got the answer.

DEBRA: Yeah, it’s interesting what you said about the dating agency because as a parent of a young woman, I can understand why there are probably more guys but was that the reason? Was that because parents of girls feel that they’re a little bit less likely to say to the girl, “Go out and date”?

CAROL: Mothers and fathers of sons are pushing them and bringing them along and say, “Please, find my son a girlfriend.” The parents of the daughters, they just put barriers up and say, “Oh no, they wouldn’t like that”. And I said, “You ask them.” “Oh, no, no, I know they wouldn’t.” And you know, with the right support and the right help, we’re so lucky, with Lily, Daniel’s fiance because her parents are so like-minded. And they just wanted her to find someone that she could share her life with. And they have and they’re so happy. And we just want other people to say, “Why can’t that be our daughter?”

I understand it’s scary but in the first place, we’re offering chaperone dates so that they wouldn’t be alone. We were offering all kinds of advice such as don’t swap phone numbers. There was a lot of safety measures put in place but they just can’t get past the fact that their young person is vulnerable (which we agree), there’s just that big fear. So, they don’t let them do it.

DEBRA: Which then stops them becoming independent and in a long term impact on the parents because … one of their great fears, or at least mine is, is what happens when I’m not around.

CAROL: That is the one. And I haven’t had a lot of people and I’ve upset a lot of people, I know I have. We’re having lovely chats and then they said “We are keeping ourself at home. We couldn’t bear to let them go. You know, we love them so much”. And then I’d say, “That’s great! But what’s gonna happen when you die or you physically cannot involve them anymore?” And they just… they has to be something there, they want it. I say, “Sort it now while you can.” When we first started HeartVenture, we were interviewing members for the organisations which have gone to the database, there was a young lady come to us. She was adequacy young lady, she was about 52 at that time, but her parents died suddenly when she was 44, I think it was, and she was put in an old people’s home. She stayed there for about 4 years and basically now, you talk to her and it’s like talking to an old person because authorities did not have anywhere for her at the time and they just found that the only option they had and so that’s where she ended up.

So, sort it now, sort it out while they’re young. And yes, it might not work the first time that you try. We are the same we try two. We have to risk a little bit to voice with the other. None of us skip the first job we take. It is very unlikely to be the first job for the rest of our life but you have to be open to risks, you know. And if you’re there to support them, then you can help them through that but they won’t be if it’s done with emergency and you can’t look after them anymore.

DEBRA: Did you start with friends then getting this together when you were doing the karaoke? How did that work? The actual getting the social activity going, you said it was accidental that it all worked so well?

CAROL: A lot of it was though about achieving things so they would be different courses going on, different activities whether they could do sports. It was about achievement but there was nothing about just going out and having a good time, you know, letting your hair down and chilling like the rest of us do. We go down to the pub, we meet our friends, we have a drink. There was nothing about that. And the nearest it came to was a few things that we went to and they were always invariably like jungle and there will be a table set up in the corner, with a few cans of coke. These are adults! They want a beer! You know, they want to go in and we noticed that it reflected in a way they were, they weren’t overdressing up, they would just go along in what they’re wearing all day; jeans, t-shirts. Yeah, that’s fine, but that’s the attitude.

And then, we’ve decided why shouldn’t it ever be a glam? Why shouldn’t they do what you and I do? So we thought, why shouldn’t they have what we have? You know, go down to the local pub. Why can’t it be a mainstream venue? Our criteria, we don’t go anywhere unless it has a bar. If it hasn’t got a bar, we’re not there. And they don’t all drink. And so we opened up, we launched it all. We did a big gala night and we did James Bond themed ball. Everyone got into spirit and we had the best night ever.

We had our resident DJ who is autistic. We also got several bands together made up of all the various guys that we know that full bands and groups, done with some dance and singing and some mainstream. You know, other people that don’t have learning disabilities joined in as well, did some singing. And we had an amazing night. And then we went forward, and we spoke to various places that had events rooms attached to pubs or whatever. And said to them, talked them into, “Let’s have it for free” and that’s basically what we did!

It’s a win-win situation for everyone because on a Tuesday night as I say, it’s absolutely burst in at the scenes, whereas you go any other pub, you know. So you could talk to your local landlord and say, “Look we would be bringing all these people, they’re gonna be eating and drinking, give us the place free and you’d be surprised what they do.”

DEBRA: Can we talk a little bit about the shared housing then? You said that you got to a stage where you didn’t want your son to live at home with you. Obviously in a fortunate position that you could do that but how did you do it and what were some of the biggest challenges for you in getting that up and running? And what’s the challenges even today with the guys living together? And what kind of sport do they get? That sort of thing.

CAROL: So, basically we wanted them to live as independently as possible and we’re about supporting them to live their lives. We tried previous to doing this and there were so many loops and hurdles come up that we actually gave in. And then, over a period of time, I kept talking to people, different support, companies. We spoke to the local social services and bit by bit, we got more and more information together. And then, I spoke to support workers that had been working with Daniel over the years that we built up quite a good rapport with. And talking to them, and we said, “You know, if we could only do our own.” So we kind of said, “Look, if we put the house together, would you come in with us?”. And they said, “Absolutely!” We put the finance in and they gave us their knowledge and skills and we just worked together and it’s a case of work on a lot of reports with social services team. They made us go away and put loads of policies and procedures together. They give plenty of things as we spoke. But we did it! It took months but we did it.

And Barry and I went out and found a house. Mortgage ourselves up to the eyeballs did it on a buy-to-let mortgage. And we converted the house so that it was 5 bedrooms with 5 bathrooms. My thing is, they’re adults, they need their own bathrooms. So, that’s what we did! And we found the perfect house, it’s opposite a bus stop to get them into town in 20 minutes and that’s what we did! When we started off, we only had 3 tenants in the first place, Daniel being one and then his 2 friends and then we had another young man come along and then Daniel’s best friend came along, and now, Lily. But that’s it, now went full to fasten.

Brighton and Hove are so pleased of what we’ve done that they actually asked us if we would consider opening another house. And I said, “We’d love to but can they provide the house because we can’t afford anymore.” There lies the problem. But having said that we do know of people that have done this that haven’t got property and had privately rented and that’s been quite successful as well. So you don’t have to be in the position to be able to buy a house, you can go out and find a landlord that will be happy to do this. And if explained properly to landlords, if they’re looking for long-term tenants, it’s perfect!

DEBRA: What kind of support do you provide? You said it’s a supported house, what kind of support do they get?

CAROL: We have 6 people here now and we have 9 staff and so it’s 24 hrs a day support. There is always someone sleep-in, a member staff sleeps in but it’s a sleep-in staff. Our guys are quite able at night. So, we’re just here in the case of emergency or oversee prompting to take meds at night. We don’t do personal care but lots of prompting. It’s a bit like you do when your kids are going up. You know, “Have you got your phone on you? Is your phone charged? Have you got your wallet on you? Bus pass?” So which constantly— it’s a military position. Organisation. Sometimes we have to… one member start to be out with someone and another member staff meets them with another person and they’re going from somewhere and that one goes back to meet someone else. We’re in contact the whole time with each other. All these, our service users have all the members and staff phone numbers. We support them with their cooking. We support them with their shopping. Every day to day thing really— clothes buying, toiletries, their room cleaned. If you just said to them “Go and clean your room”. He would be 2 minutes cleaning it and the rest of the time with his computer because he is easily distracted. And then there’s a good side where we go on holidays with them.

DEBRA: But assuming though that there’s a cost to all this. [Absolutely!] With Classly that would be a big challenge for anybody trying to do it.

CAROL: Well, you see you got to remember, I’ve always said to people, “Think 3 parts”. So there’s the rent (which gets paid by the local council, it’s housing benefit), then they have their benefits in their own right (their ASA, their PEPS). So that, they pay all their own household bills with that. So that’s another thing we support them with. We put all the bills together every month. We pay them and then we a portion as usual like the electric that’s just a straight for divide between 5,6 people, and food, they all said they’d like to do it that way. And then there will be some other things that we might get fair tickets. So that all get a portion to whoever has that extent.

So every month, they pay their share of the household bills. So that all comes out of their benefits and then you’ve got the support staff. We’re contracted to Brighton and Hove. We have divide contract with them. And we negotiate their support. So there’d be a set amount of hours plus we negotiate how many one-to-one individual do they need and the social services pay that. Parents don’t need to pay anything. These people, they are their adults in their own right. And because there’s 5 and there will be 6 soon, you know, they can afford to do it and they can afford to save and go on holiday.

DEBRA: Do you think that’s the right thing that people don’t see. I mean these are obviously only parts of UK but generally, do you think there’s a perception that it won’t be affordable because they need support, they won’t be able to afford it?

CAROL: Yes. Long issue can get that funding from the social services and they agree to funding to have max where you have to fight. That’s the biggest fight. Because the ASA and the PEPS, you have to go sometimes for medicals and whatever but normally, that’s not a problem, so they get that anyway whether they’re living here or living at home. That’s the big cracks, it’s getting the funding to support them within the house. And that’s where it always is a lot of negotiation has to go on the social services as to… they will assess them as to what they believe that they need support whilst you assess them to what the reality is. That is the tough bit to get. Sometimes, people are lucky. The social services accepts that they need help and sometimes they’re not . Social services obviously everywhere strapped for cash now. Funding’s been squizzed and squizzed and I don’t envy them because it must be a really hard task deciding who gets funding and who doesn’t. But obviously, all the time parents all say, “Oh okay, they can stay at home. That’s what’s gonna happen because it’s the cheapest option.” But you know, at the end of the day, sometimes, we have to say “I’m making my young one homeless”.

DEBRA: I mean, I don’t want to put words in your mouth but it seems to me what you’re really saying is that when it comes to something like socialising, when it comes to something like housing, sometimes as parents, we just need to do it.

CAROL: Yeah, no one else is gonna do it for you. That is it. And you have to do it. You’ve got to think of the greater good. And I can’t tell you the difference it makes. And other parents that I speak to, “Once they’re in a place and they’re happy, you see them having such a great social life.” I can tell the difference when we do HeartVenture between the ones that live at home with their parents and the ones that live in supported living residents. And I’m sorry if this upsets people but the ones live at home stay next to their parents and the ones like our guys are out there. They’re having a good time, they’re socialising, they’ve got all the skills. And that is the difference. There are some that live at home and they have been able to find the balance but I think it works more if they’re more independent. If they need someone to accompany them wherever they go, it can’t be sustainable forever at all. You haven’t got the energy yourself and they need to get out and socialise with people their own age.

DEBRA: Carol, thank you so much for your time.

CAROL: Thank you.

DEBRA: Key takeaway? Well to borrow it from popular saying If not now, when? Even small things matter. Putting in our young people’s minds that they’ll be moving out one day, it may not be soon but it will happen.

HeartVenture Facebook

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Managing Mental Health

Podcast Episode 74 We all appreciate the importance of good mental health but sometimes lack the toolbox and even the support to consistently achieve it. This is often the case for young people, particularly those with an additional need. In this episode we are talking with Kimmy Obo from Kooth a UK based organisation offering an innovative way of delivering support when and where young people want it.

Kimmy explains what Kooth offers and how it supports young people particularly at those times where they are not sure who to reach out to. Kimmy also discusses healthy coping strategies that young people can use to manage their mental health and activities that contribute to positive feelings of well-being.

Kooth is an innovative service taking advantage of the benefits that technology can bring to all of us when used in the right ways. But even with the use of technology it is all still about people reaching out and supporting each other reminding each other as Kimmy does that we all have good and bad days and we all need to work on our own positive mental health.

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Podcast Transcript
DEBRA: Welcome to Episode 74 of the Journey Skills podcast. This week we’re talking about mental health and innovative way of enabling young people to manage their mental well-being, get the support when they need it, learn from other young people, and do it all in a non-invasive way.

I’m talking to Kimmy Obongonyinge from Kooth which is a UK only based organisation. So I imagine some of you are now thinking “Well, that’s not much used to me” but bear with me, although maybe you’re not surprised because if you’re a regular listener, you’ll know that we pretty much go around the world. Maybe you’ll even be like me and have the same thoughts that I often have after listening to a few episodes all from the same part of the world and thinking “Right, we need to move there.” There was certainly a moment for me a while back when New York was top of my wish list but I hope that’s what’s unique about the podcast and that we’re sharing so many stories and solutions from all around the world and not everything will apply to everyone, not every story will resonate with you, not every solution will work for you. But even if they don’t, they inform you and I think in every single case they inspire you. It’s all about learning from each other and realising the possibilities out there. And it also gives me hope that somewhere young people are getting the support that they need to live as independently as I want to.

So it’s really about sharing and there are so many people and organisations doing the work needed but all too often we’re unaware of them. Of course, they can always be more options and I know there is a long way to go until we get all the changes we want but it isn’t quite the days I’d imagined when I started up this podcast. So please become a collaborator and if you have an idea, don’t start it without looking around to see if there’s someone gone before you, that someone that you can learn from.

This conversation with Kimmy, she offers some practical tips about how to help our young people manage their mental health, also I think there’s some wider issues that play here, it’s about looking at how technology can aid our young people and make independence a probability, not just a possibility. Many of us, myself included, have a very much love-hate relationship with technology. It does all for our young people better options for independence. My own daughter’s independence is been really aided by being able to use things like contactless payments and accessing online train timetables but then, of course, there is a dreaded social media minefield that presents its own challenges as well.

But in this interview, we see how technology can be utilised into something that could connect people in a positive way. Another thing I’ve been flipped by saying that it probably saves lives as well. This is an amazing idea and I kind of imagine it will take too long before it expands into a much wider audience and helps more people and supports more people with their mental health.

DEBRA: Today I am talking to Kimmy Obongonyinge who works for an organisation called XenZone which is helping young people with their emotional well-being. Welcome, Kimmy!

KIMMY: Thank you, Debra. Yes, just a bit of introduction, my name is Kimmy. I’m incredibly passionate about mental health. I had been since the age of 13 so it’s really great to be working for mental health company like XenZone which provides this really wonderful national service that I’m gonna be telling you more about in a moment. So yeah, I just want you guys to know about it, to know kind of that it is available to you and that it provides completely safe space. It’s very unique to a lot of other services. So yeah, I hope you guys log on later and find this information helpful.

DEBRA: Can you just tell us a little bit about you said you’re passionate about helping people with mental health, can you tell us about your background and how you got to work for this organization, really?

KIMMY: When I was growing up, I was really interested, I’ve always been interested in kind of pediatrics and supporting young people but like most young people, I kind of didn’t know which direction to go in, but when I was diagnosed with ADHD, then I was kind of going through the process of diagnosis and that is when I first kind of really became passionate about mental health because I start to look into my own mind and kind of how my behavior and mental health was linked to things like that.

So yeah, then I studied Psychology at college, I then went on to study Psychology at university, I did an undergraduate degree and when all I came out from university, I worked in a mental health crisis centre called the Haven Centre and where we’re supporting young people who would describe themselves as in mental health crisis, a lot of them did have additional learning needs. We did get a lot of young people with autism, we got a lot of young people with dyslexia and things like that because there is definitely a link between sometimes additional learning needs and mental health as well. It’s because there’s a lot more first to consider if you’ve got an additional learning need.

And then eventually, when my contract was up I went for 3 months and did an internship with the aid support organization there to learn about the relationship between physical health and mental health. And then when I came back, I was looking into jobs and I came across this really amazing role in XenZone where I get to go into schools, raise awareness of the service as well as provide mental health provision in those schools. So that’s how I got involved with this organisation.

DEBRA: Can you tell us about the organisation and what exactly they do?

KIMMY: XenZone is a mental health company but with a twist because a lot of it is about digital mental health support. The reason it came about as an organization was because we saw that actually was this huge gap in mental health provision because a lot of it relies on you being able to meet with individual safe space but we know that actually there were a lot of different barriers that individual’s experience when accessing mental health services and one of the biggest barriers that people experience is just that discomfort of meeting with a complete stranger the first time feeling like you have to divulge and give away all this kind of puzzle information about yourself about your deepest fears and concern with a complete stranger.

So we thought you know what let’s actually create a service that looks about how we can reduce those barriers, let’s make it an online platform. So if we do get an individual who does really struggle from anxiety, who maybe doesn’t feel super confident in social situations, they have a space in which they can talk to someone about how they feel and get support and don’t necessarily have to leave the comfort of their own homes. So we provide the service. At the moment, our strongest service is Kooth which is for (and our most developed service) it’s for young people but we’re also developing service for adults called Qwell in addition to a service specifically the students called Kooth students.

DEBRA: So exactly what happens… what’s the process if someone… so this is all done online, so do you have people online? How does it actually work?

KIMMY: So with Kooth, there’s no voice involved, there’s no video calling involved because we know that just as adults, we can feel a lot of anxiety when it comes to calling people and video calling and things like that. So, we’ve actually made it all what we call asynchronous messaging which is very fancy way of just saying text messaging.

So the way that a young person, if they are looking for support and they do wanna talk to a counselor, the way that they would do that is to something that looks very much like an iMessage conversation or Facebook Messenger conversation or Snapchat conversation, it’s all text-based.

DEBRA: So they just go on the website and they type in their concerns and then someone will come back and feedback to them?

KIMMY: Not quite. So what happens is the young person will type in www.kooth.com then go to kind of the homepage and they would have the option from there to sign in. When they sign in, they have to select the place they live because we are already available in very specific areas of England at the moment because we’re funded by those local authorities. And then the young person would put in other data about themselves, about their age, their ethnicity, and how they perceive their gender. We never any point ask for their name or their exact address. We just ask the place they live so for example if you’ve got a young person who goes to school in London in Harringay, that box there, they’d put Harringay area.

And then once they’re logged in, they have access to loads of different resources, peer-to-peer support as well but if they did want to chat specifically to a counselor, maybe he just wants the space to vent, you could go to Chat Now option which is very, very big and bold. There’s no way you can miss it. And from there, you’re going to small waiting queue. Usually, the wait is from 5-10 minutes, and when a counselor becomes available, they’ll let you know that you have 5 minutes to jump into a chat with them and then from there, you would get the support that you need. And the first kind of conversation would be a very informal assessment just to find out what your concerns are, what is your level of need, what support you want over the next few weeks.

DEBRA: So what kind of things do people contact Kooth with? What kind of concerns do a lot of young people have?

KIMMY: So we got a lot of young people who are struggling with anxiety. I think that in itself is one of the more common mental health disorders that we’ve seen in young people today and that is definitely reflected in the young people that utilize the service. We get a lot of young people who are struggling with exam stress and anxieties around exams, stress around options and often linked to anxiety.

We do see a lot of young people talking about some harm and looking for ways to overcome or to find a more healthy coping strategy. So we get a lot of young people using it for various reasons but I think the most common is definitely anxiety.

But we do get a lot of young people who in situations where you kind of feel like “I don’t know who I can talk to, I don’t know where I can get support from”. We get a lot of young men involved in gangs utilizing our service because they don’t know where else they can get support and it is a completely safe space because it is completely anonymous. Those young people who know that actually they can talk to someone and this information isn’t gonna leave that safe space. So we do get a lot of young people who are involved in situations where they might usually feel like there’s no one who can understand or relate to them and might not know where to go to for support.

DEBRA: Is there a sort of set of strategies that… say for something like anxiety, is there a set of strategies that you guys would recommend people to sort of start with?

KIMMY: So generally, a lot of what the counselors do is to empower the young people to be engaging with face-to-face services and school counselors and things like that or talking to parents, talking to friends about what they’re going through but our counselors are all highly qualified and trained staff so a lot of what they do is not so much talk therapy which is someone what we perceive counseling to be but actually it’s all about being proactive and actually managing your mental health so the counselors will go through cognitive behavioral therapy technique, dialects behavioral therapy techniques (DBT) to enable the young person to kind of look at the things their lives that are causing them maybe stress or anxiety and then go from there, looking at how they can kind of disassociate anxiety with those things that make them feel anxious and maybe helping them to have a more positive perspectives of those things that make them feel anxious rather than focusing on the negative thing.

DEBRA: So you said there’s resources as well available on the website, is that from other people talking about their own experiences like case studies or is that again tactics strategies? What kind of things do you have available?

KIMMY: So there’s a variety, we have a space called Kooth Magazine. I mean, it’s a really great space, we have a huge and a really collective community of young people who use this space. I mean, it’s a space for young people to write an article maybe, to write stories, spoken word piece, a rap, whatever it is that they want to do to express how they’re feeling. So it doesn’t even necessarily have to be directly about mental health and well-being. It could be about a topic they’re passionate about so, for example, the other day I saw a really great article on Black History month where a young person was talking about why it’s important to her and educating other young people on why maybe they could engage with things going on to their community that was related to Black History month.

So, it provides people with a space to share things that they’re passionate and interested about but directly if we’re talking about mental health, there’s also loads of things that young people post on that space relating to mental health so I saw a really nice poem the other day it was called Dark Poem and it was written by a young person who was sharing their experience of depression and loneliness and it was really great because at face value you might think actually that’s really negative but actually, it provided this young person with a space to express how they were feeling and also it provided other young people who are reading that with the opportunity to know that they weren’t alone. That if they ever feel that way, that actually there are other people that feel that way.

So there were comments underneath the poem like Thank you so much for sharing this, it’s really brave of you and there were other comments that said I know exactly how you feel and this is what I do in those situations: I listen to music, I go to the gym, I do this. It’s a really great platform for peer-to-peer support. And then we also have forums as well where young people again can express how they’re feeling in one place under a theme and other young people can comment and post and give advice and strategies on how to deal with that.

DEBRA: And obviously, it’s a much safer than the sort of broader online forums that young people can access generally.

KIMMY: Yeah, definitely. So everything on Kooth is monitored 24/7 and we do something called pre-moderation. So before an article goes up, before a comment on the site goes up, it’s moderated prior to that so we can make sure that the site remained safe and supportive. So nothing will go out without being monitored by our online team if we do think something’s not appropriate we’ll send you a private message and just say “Hey, maybe you want to rethink how you say this.” just because we want to remind you that this is a safe and supportive space. So there is no opportunity for any abuse or anything like that to be on the website because it’s pre-moderated. All of our articles are also monitored by our clinical team as well to make sure that the support and advice that’s given on them is appropriate and is safe for young people too.

DEBRA: Just to talk I suppose in more general terms because as you’ve said this service is only available in small parts of the UK and we’ll come back to where you want Kooth to go in the future but what sort of suggestions would you have for a young person or a parent more likely listening to this and they’re concerned about the mental well-being of their young person who has additional needs. What kind of strategies or what kind of suggestions would you have in a more general sense?

KIMMY: So I think the first step for a parent and for a young person who’s going through a mental health challenge would be to acknowledge that. We all have good and bad days, that mental health is something that every single human being has and just like we can engage in activities that improve our physical health like eating healthy food and exercising. And there are lots of things that we can do, practical things that we can do every day, to contribute to a positive mental health. And also acknowledging that you might be feeling really rubbish today but you might not feel the same way tomorrow. A lot of mental health conditions they’re not chronic, you might be depressed, you might be more vulnerable to feeling depressed but actually there is always a way out.

So this is in general things that I always advise young people to do. They’re really practical and really easy things. They don’t require to go out of your way in any way, it’s just something that you can put into your daily routine to achieve good mental health. And one of the kind of top thing is to get seven to eight hours of sleep. So I know it sounds really, really boredom, really general but sleep has a huge impact on our overall well-being and sleep is important because it enables our bodies to repair, to be fit and ready for another day but alternatively, the lack of sleep can make us grumpy, it can make us feel really rubbish just emotionally and it can make us difficult for us to focus and learn. And regular poor sleep can have a huge impact on our physical and mental health as well going on to the future. That more often than not, a lot of young people aren’t getting seven to eight hours of sleep and that in many ways does contribute to poor conditions like depression and anxiety because your body is not having the opportunity to repair and recuperate.

Another tip would be to try and engage with your hobbies and interests and if you don’t do that already, to find something you can engage with, to find something that you enjoy doing. There’s so many opportunities in your local communities, so many things that young people can access for free, whether youth group or music group. There’s so many things that young people can be doing to keep their minds healthy and to keep our bodies healthy as well and it’s really important to engage with our activities that we enjoy. Even when life is busy because I know when life is busy we can avoid doing the things that we can enjoy or we can neglect those things because we’re trying to keep up to date with our homework or coursework. Then in the process we’re not taking care of ourselves. It’s really important to encourage your children and to encourage your friends or to just to encourage yourself to get out there and to make time for those things that you enjoy doing.

It’s really really important as well to stay organized. So these, like I said, they’re very very general things but staying organized is one of the biggest contributors to anxiety. We get a lot of people using Kooth who anxious because of exam stress because of course back stress, and a lot of the time they could have prevented themselves from being in that situation just by remaining organized.

And just a final tip is to avoid avoiding things that make us feel comfortable or anxious. So today, like I said anxiety is one the more common mental health disorder in children and young people and in adults as well. And many of us avoid the things that make us feel anxious but by avoiding those things that makes us feel uncomfortable and anxious, we’re actually not helping ourselves at all because we’re not training ourselves to build the resilience we need to overcome those situations and it can mean we missed out on a lot of great things and the only way to overcome anxiety is to face it head-on.

I’m not talking about jumping straight into a situation that makes us feel super uncomfortable and super anxious but rather trying to slowly expose ourselves to those situations where we go anxious. So for example, maybe school makes you feel anxious and because of that you’ve been avoiding going into school for a significant amount of time. Instead of avoiding school, maybe try going in one day a week over a couple of hours a day to slowly get yourself back into the routine and build up the resilience to deal with that situation.

DEBRA: Okay, because you mentioned before about the fact, a lot of people are lonely, do you think that even though we’re connected in a social media sense, it seems to me that particularly for young people with additional needs, they can get lonely anyway because they’re sometimes cut off from their peer group because they don’t necessarily have the same freedoms to go out and do things. Do you think that’s a real big contributor? People feeling lonely and thinking that they’re the only person that has felt like that?

KIMMY: Definitely. It’s definitely one of the biggest contributors to depression because we’re then left with ourselves and our negative thoughts that can kind of spiral out control when we’re on our own. So it is really important, but alternatively, there are lots of things that young people can get involved in. Even if you do you have a physical disability and maybe you do you feel trapped in your own home, you feel like you physically can’t get involved in things. There are a lot of opportunities in your community that are accessible for you to get involved in and there are loads of young people that can relate to that feeling of loneliness regardless of why they’re feeling lonely. Sometimes it can be difficult to fight but it’s always worth logging on to your computer or talking to your teacher or your home school worker or whoever is to find out what opportunities are available to you because it is really difficult to go through life on your own. It’s so important to be talking about how we feel but we can’t do that if we don’t have people around us and a network of people around us.

DEBRA: Which is I think why your sort of service is so unique in lots of ways because it can bring people geographically, you don’t have to be there, you can just log-in. Which kind of brings me to the final part of what I want to ask actually was around, what’s the future for the organization because I understand that you get the funding from parts of the UK but being an online service, do you see that being you’re able to offer that service in a much wider geographic way?

KIMMY: Yeah so I mean, actually there are very few parts of the UK that aren’t covered by our service at the moment. The service we provide, it isn’t specific. We don’t, for example, offer one level of the service to some areas and not another to another. We provide the same service in every single area that we’re funded to operate in but the service is undergoing a lot of exciting developments. We’ve got an amazing contract with a charity that supports deaf young people. So our counselors are all undergoing training at the moment to communicate with deaf young people because we understand that the way that you guys communicate via message– the structures and sentences are very different to how we would construct our sentences if you’re not deaf. So when the moment our counselors undergoing that training which is really exciting so we’ll be accessible for deaf young people who are a vulnerable group. I mean, who do struggle more with loneliness as well.

We are really trying to make sure that our service is able to support young men, they’re one of the target groups that we have at the moment. So we’ve got a lot of feedback from young men across the country to find out how we can make sure our service can be more engaging and accessible for them. And we are always working with young people to constantly develop our service. So our service changes a lot from year to year because we’re constantly getting feedback from people and we have Kooth ambassadors as well who provide us with all the feedback too, on how we can make sure that our service stays current and up to date and accessible for all young people, essentially.

DEBRA: Thank you very much for your time, Kimmy.

KIMMY: No problem. Thank you for having me.

DEBRA: Key takeaway? Mental health support can be delivered successfully in different ways in this case online. I think it’s an important takeaway because there’s clearly funding issues around mental health and support that are out there so this is a really innovative way to be able to do it.


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Learning to Relax

Podcast Episode 73 Emotions are part of being human. But for many of us there are times when we wish we had better tools to manage our emotions. This can be especially true for young people with additional needs who often face extra internal and external emotional triggers. In this episode we hear from Dana Bishop a Relax Kids coach on some of the strategies that can be used to not only manage the way we feel but to harness these feelings and increase our mental health wellbeing.

Dana shares the 7 steps model of Relax Kids explaining each step and providing examples of how has used it. The steps model work around the idea that you can’t just decide to relax but rather you need to go through a series of steps which will help you get to that relaxed state you are after. Some of the tools Dana talks about are one’s we have all heard of like breathing exercises and affirmations but she provides a timely reminder that it’s the simple ideas which are still the best.

Being able to understand and manage emotions is key for our young people in their daily lives and a skill that most will need to explicitly learn. The Relax Kids model of understanding that to relax is a process not just an end, and knowing what the steps are, will be for many people an invaluable addition to their emotional toolbox.

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Podcast Transcript
DEBRA: Welcome to Episode 73 of the Journey Skills podcast. I recorded this episode a while back but kept it in the bank so to speak because I felt this would be an ideal one to put out just before the Christmas holidays in preparation for a period that we can all find a bit emotionally overwhelming. But it’s also a time where we have more time to reflect, more time to spend together, and to do the kind of things that we’re talking about in this episode.

I’m talking to Dana Bishop about the Relax Kids program. Dana is a Relax Kids consultant and she shares the 7 steps that the Relax Kids program actually uses. Dana was just really sharing some simple tools and I think it’s really easy to forget the simple tools are often the ones that work the best. So she’s just talking about things like affirmations, and this is one of the things I took away from talking to Dana. And I’ve actually been working on this with my daughter. And it’s a really simple thing to have affirmations everyday but it can make such a difference to a young person particularly if they have some confront issues.

There is some other great ideas she shares as well so I hope you get something that you can takeaway and use over the holiday break. Of course Relax Kids is a business, so I should say that this is not an advertisement or endorsement of the program but also like to say that I really appreciate Dana being so generous in sharing her knowledge.

DEBRA: Today I am talking to Dana Bishop from Relax Kids. Welcome, Dana.

DANA: Hello.

DEBRA: Can you tell me, first of all, a little bit about yourself and then about Relax Kids?

DANA: I got involved with Relax Kids about 18 months ago now and I found out about it through a friend who has got a daughter with medical needs because my son himself has got long-term health conditions and was really struggling with his emotions and he was saying horrendous things that he wanted to die and he just wasn’t coping with life at all. And we weren’t actually getting any support for him emotionally. So I thought I need to find something to help him.

And then my friend told me about Relax Kids which I hadn’t actually heard of. It’s actually been going for 19 years, believe it or not, but still some people don’t know about it. And I looked into it and I thought this is what he needs. So about a year later, I did the training and very quickly I noticed that the techniques which I’ll talk about in more detail in a moment, was starting to help my son deal with his anxieties. So really, it’s been absolutely fantastic, not just for him, but our whole family, for his brother as well who was hearing these horrific things that my son was saying. I wish I’d find out about it sooner, really.

DEBRA: So can you talk me through, say for example someone comes to Relax Kids, what’s the process and where do they start?

DANA: So, Relax Kids follows 7 steps. So we take children from high energy through to relaxation. These 7 steps include movement, play, yoga stretching, self and peer massage, affirmations, deep breathing techniques, and relaxation. And to find that it’s a natural.. the steps, take children then from not suddenly being high energy to expecting them to relax really quickly. You’re more naturally coming down to relaxation by following those 7 steps. When I carry out the sessions with children that by the time you sort of get to the stretching and the massage, they’re starting to calm down getting them ready to go into the deep breathing and the affirmations and relaxation. So all sessions follow 7 steps.

DEBRA: So, the 7 steps, can you just go through them and talk about what happens in each step?

DANA: Yep, so for example we start with movement and play. This includes high energy and fun and games so children increase in their heart rate, might to do with some team building with the group and really the movement and play are the two lively steps. But if I was doing this with a one-to-one (because I do one-to-ones as well as groups) what I tend to do with the movement and play is I include quite a lot of games where I’m getting to know the child. A quite mindful games like Jengga or Solitaire and I’m talking to the child as they’re playing as well. And often children, when they’re playing a game, they don’t actually realize that they’re opening up because they’re more relaxed.

So I adapt the sessions because obviously the games that I might play in a big group of children aren’t always going to be suitable for a one-to-one and actually I work with a girl who was nonverbal and what I did for the movement and play part was I used a lot of sensory activities. So we played with multi-coloured rice, pasta, slime that actually really enjoyed the sensory aspect of it because obviously the normal games that I would have picked into place weren’t necessarily going to work with her being nonverbal.

And then we go onto the stretching which is basic yoga stretching to stretch out the body and awaken the body ready for the rest of the session. I’m not a yoga teacher but I’m able to teach them basic stretches. And these can actually be really good because you can adapt them again for the classroom. So, say for example, a child gets seem restless and all their hands are aching with lots of writing, I can teach them exercises to stretch out their hands or stretch up to the ceiling. Just things that they can do that they’re seated instead of having to move around. So again, it can be really adaptable.

And then the feel part is the massage, which actually, with children as well that I’ve worked with sensory issues and the parents might say to me, “I don’t know if they’ll like the massage.” I’ve actually found that the massage is often the favourite part. And I teach them how to do a massage on themselves like a relaxing phase massage or hands or feet. Or if sometimes in my sessions, it might be the whole family session or with a sibling. I’ll teach them how to do it on to each other or if the parent isn’t there, I’ll teach the child how to do it so that they can do it on a parent or parent can do it onto them. And we include massage because again massage can be really relaxing and really lovely bonding activity between a sibling and a child or a parent. And again, if a child didn’t like massage (I haven’t found that yet), I would adapt it in a way in which I say, “Well let’s do it on a teddy bear” so that they don’t have to do it, touch themselves if they weren’t too keen. But I do actually find that they really enjoy the massage.

And then we go onto the deep breathing technique. I say that this is one of the really important steps because it’s the deep breathing that can really help to calm you down. And I sort of explained it, when you’re taking the deep breaths, it’s because you’re focusing on that breath, that you’re concentrating on that instead of being really whine up or angry or really anxious about something. And I make it in a fun way, so we use feathers. Yesterday with a little girl, she was blowing her worry bubbles away. We use things like a breathing ball, which basically is showing them visually what’s going on with a diaphragmatic breathing because when they’re breathe in, the ball goes out and when they breathe out, the ball goes in. So it’s very visual.

So I’m not just necessarily just making the child sit there and just do deep breathing, I make it fun. And as I said I think the deep breathing is one of the most important steps. And things like hand-breathing where they trace up and down their fingers and I’ve had one little girl who was going back to school having been home-schooled. Her mum was saying, “She would sat in the car, focusing on doing her hand breathing before she went into school.” And again, that’s something that you can use anywhere because obviously some of the things like using the feathers and the props, that’s not adaptable but you can just use your hand breathing under the desk. So, I include activities that they can use anywhere as well.

And then we move on to the affirmations. And a lot of children have absolutely no idea what affirmations are. So I explain to them, we call this step Believe actually. The affirmations are about saying kind words to believe in yourself. And they’ve often find this quite strange at first because saying to yourself, “I am amazing, I am calm” can be quite alien because you might have somebody saying positive things to you but teaching somebody to say positive things themselves is quite new for them.

But I say things like looking into a mirror so you really believe in yourself. And my youngest little boy from four years old, he would really confidently do this because he started from so young. And actually, that step I find really powerful with my eldest and his health issues because one of his conditions is he’s got a really severe skin condition and he gets very itchy and he would keep calling us and calling us for help but now he would say, “I’ve said my affirmations, I’ve said I am calm. I can do this but mommy I’m still itchy, can you help me?” So, he’s really using those to help him. I often give children affirmation cards at the end of the sessions to take home so they’ve got the visual representation or I put them into my boys’ lunch box so they can see it at school. So affirmations are really powerful.

And then we end with the relaxation. And the relaxation, we use books from Relax Kids and relaxation is obviously great as the word says the relaxation book. Fantastic also for children using their imagination because all of their meditations are written around themes like amazing hues, the happiness way. So I had one child recently who said to me after the relaxation, “My goodness, I was really there. I was really in that worry balloon. I could really feel myself and see myself there.” So, it’s fantastic obviously for relaxation but the imagination side of it as well, it’s fantastic.

DEBRA: So, you say you’d deal with younger children, when it comes to older children, how can they use the same sorts of things?

DANA: So Relax Kids is really adaptable. Some coaches going to care homes and do relaxation with elderly people with Dementia. There is a specific program for 10 year olds and sort of going into the teenagers called Charge Up but we still follow the 7 step techniques but obviously it’s adapted to the older age group.

DEBRA: Have you found then some of the children you work with, they’re starting to use that without you being around, they’re using all these techniques. All the techniques or do they pick out, you said about the breathing techniques, do they pick out individual bits or do you think they’d run through the whole thing or they just find something that they can relate?

DANA: I think what you’re saying is true actually that often there might be one aspect of it that really touches a child and it might be like with my son, he tends to use the affirmations a lot and then I got a message from another parent who will say, “Oh, so they really practicing their breathing and they love using their worry bubbles or the different props.” or again, another child loves using the relaxation books. So I think you’re right. Not necessarily that they follow those 7 steps because actually when I do a session whether it’d be one-to-one, community, family, or in a school, they tend to be 45 minutes to an hour long, so for a child to sort of run through that themselves is a long amount of time.

So, it seems to be that they dip in and out of what is the favourite step or again the massage actually I get quite a lot of parents who say, “Oh, we’re loving the massage. We’re doing that every night as part of our routine before we go to bed.” So I think it is more… I think the most popular seems to be the massage, the breathing, the affirmations, and the relaxation because I think with the movement, the play, and the stretching, that tends to be something they’re doing more as a group or as part of the 7 steps. I mean, they might use these steps– the stretching in school if they’re at their desk and they’re getting restless but I certainly think that actually the more calmer step are the ones that they’re using more often.

DEBRA: Because the other ones they don’t necessarily need all the time…

DANA: I think that’s what it is actually and they find the movement and the play, and the stretching— they’re great because they’re part of the 7 steps but I think, often my feedback (because I ask for feedback sort of at the beginning and end of my session) they love those steps but they’re the more lively and fun steps and I think you’re right, the other steps they’re using to put into place when they’re in those difficult situations and struggling with those difficult emotions.

DEBRA: This seems like quite a simple idea doesn’t it? Going from a very stress to unstress but having those different steps. Putting you on the spot, do you have a favourite? Do you think there’s one that actually you find makes the most difference to people? I know you said your son prefers affirmations but is there one that you think for example parents who are listening to this could take away and go actually ‘Just use this one and this will really help you straight away’.

DANA: I mean I think I love the relaxation because I remember when I first started doing this, we live in such a busy world. You know, everybody having to work and juggling work and school and being parents and children have a really busy lives with all the after-school clubs and hobbies that they have. And actually seeing children laying down at the ends, snuggled up with their blanket with cushions and cuddlies and often now laying there for a walk can be up to 15 minutes, relaxing and calm, I found that really powerful and I know that Marneta, the founder that was one of the main reasons that she developed and created Relax Kids because she was actually a clown and she was doing children’s parties and finding that even in a really sort of fun, lively situation the children just weren’t focusing on her as an entertainer and she just sort of “What is going on?” So when you’ve actually got those children calm and listening to a relaxation and being at the moment, I find that really powerful with us all having such really busy lives.

DEBRA: But when you say that, it does sound like you couldn’t get to that last point without doing a couple of the other things.

DANA: You’re right. I do think that the seven steps definitely are created because they get you to that instead of some schools are really trying their best I know with all the time constraints that they’ve got and the children were coming from the play time and they might say “Alright class put your head on the desk.” and trying do short relaxation but the children are so sort of whine up and lively to suddenly go from being lively to put their head on the desk and trying to relax is really difficult which is why the seven steps work. But the relaxation can be still really effective by itself. It just does work better if part of the seven steps. Saying that at bedtime using the relaxation, Relax Kids CDs or the books can be really effective at bedtime. You know, when you’ve got to that calm place with maybe bath and reading and then putting on a Relax Kid CD or using one of the books. One of them as well the Dream Machine is more interactive where the child goes on a mindful journey. There’s a hundred thousand different story options and there’s use of meditation, the breathing, the affirmations and even though that is more interactive that one is really popular as well for bedtime. So you certainly can use it as a standalone step and I think once a child has been introduced to the 7 steps, they are then more able to use it by itself but I’m just saying especially when you’ve got a big group of children to get them through to those seven steps through to the relaxation is just more effective because it’s their natural energy state. Especially for doing it at a different time in the day when they may be more lively.

DEBRA: Can you tell us about the resources that are available, you just quickly mentioned there books but what else is, where would people go to find out more about Relax Kids and what resources are available for them?

DANA: So for example relaxkids.com you can see the store on there with all the different books that have been written. There’s a fantastic new book coming out. Right now I think it’s in pre-launch called The Imaginarium which is going to be brilliant for the teenage age group. There’s also cd’s on there as well. And also, there’s often free resources for example a 21 day program for relaxation. October affirmations so you can print that out and read different affirmations. There’s usually at the beginning of the year an affirmation calendar for the whole year. So there’s lots of different resources on there. There’s also our Relax Kids Facebook page and also I’ve got my Relax Kids Facebook page which is Relax Kids Tadworth and Walton with Dana and I often put ideas on there and resources but the relaxkids.com, there’s a lot of information and resources on there that parents can buy and use at home.

DEBRA: Dana, thank you so much for your time.

DANA: Thank you.

DEBRA: Key takeaway? Often solutions aren’t just one thing, sometimes it’s steps to solutions or a few different things working together.

Relax Kids
Dana’s Facebook Page

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Seeing Below The Surface

Podcast Episode 69 Accepting ourselves by embracing our strengths and understanding our weaknesses is key to our own happiness. How to do this is the theme of this episode with Alis Rowe founder of The Curly Hair Project.

Alis talks about her own journey from when she was diagnosed in her early twenties with Asperger syndrome. She explains why she created The Curly Hair Project, what is does, and how it aims to help people on the autism spectrum and their families. Alis also shares some practical ideas that she has implemented to enable her to navigate difficult situations and live the life she wants. Some of the ideas are simple, and could apply to any young person with additional needs, but they make a massive day to day difference to someone’s life once they start using them.

Alis also advocates the importance of putting yourself first and making decisions around what is best for you, not others. She acknowledges this won’t always be the easiest option because it requires you to sometimes be very honest with those around you and often with yourself.

Finally, Alis reminds us to be ourselves because, as she says, “Where the magic happens in life is where you embrace the natural strengths and interests that a person has.” We could all do with a little more magic in our lives and listening to Alis should serve as a reminder to all of us that we are so much more than what the world sees on the surface.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 69 of the Journey Skills podcast. Although my focus is often around talking to people who provide solutions or resources in three areas that Journey Skills focuses on which is work, relationships, and daily living, the other part of Journey Skills is very much about sharing stories. When I started these were mainly from parents’ point of view because you always start with what you know, but recently, I’ve been really fortunate to be able to speak to people who have additional needs and see these as an asset and something that they can work with, and that’s a positive message that I definitely want to share with my own daughter.

As a parent, I find this actually as much of a help as finding yet another amazing employer or volunteer organization really helping to change the lives of people because I hope that one day, my daughter will come to see her additional need as an asset and part of what makes her an amazing human being.

So this week, I’m talking to Alis Rowe, the founder of the Curly Hair Project. I’ll let Alis tell her own story but for me personally, this was about talking to someone who shares her story to inspire other people and talking to someone who’s living the kind of life we all want, regardless of any needs; a life of purpose.

The other thing I got from our discussion was the value of tools and sometimes how it’s the very simple things like a To-do list that can really help a young person manage their lives. So Alis shares some very practical solutions as well, but really why this podcast is worth a listen I believe is to hear Alis talk about how to get rid of the things that don’t matter in life.

So the podcast isn’t just a story but it also offers proven solutions that have worked for her and may work for your young person. This is a podcast I’ll ask my daughter to listen to because I think it will resonate with her and I hope it will resonate with you as well.

DEBRA: Today I am talking to Alis Rowe from the Curly Hair Project. Welcome, Alis.

ALIS: Thank you very much.

DEBRA: Can you tell me a little bit about the Curly Hair Project and how it got started?

ALIS: So the Curly Hair Project is a social enterprise that supports people on the autistic spectrum, their families and professionals; so teachers and doctors and anyone working with autistic people. I started it just after I was diagnosed with Asperger’s syndrome in my early 20s because I couldn’t really find many resources in particular for adult women so I created my own. And it was sort of like a way to teach myself about autism but it happened to teach a lot of other people as well. It just grew from there really. So, I’ve written a lot of books; my autobiography is really, really popular. And I’ve written about 25 books and make films and now I’m making rap songs. And it’s just really grown over the last few years.

DEBRA: What’s the main purpose of the Curly Hair Project?

ALIS: Just to educate people, really. I think a lot less now that it’s directly for autistic people, everyone tells me that my work can benefit everyone. It can just make you a more insightful and empathetic person and I really focus on equipping people with practical strategies that can actually change your life and make your life easier. And it’s also to educate people that not everyone sees things in the same way, that someone who appears very shy and unsociable on the surface, might be having some quite severe challenges underneath.

DEBRA: Can we talk a little bit about some specific issues that young adults might have on the spectrum or otherwise (as you said it can apply to other people not necessary people who have autism) things like prioritizing tasks and managing deadlines, have you got some tactics that you could suggest that might help people to manage those issues?

ALIS: So autistic people in particular might have difficulties with this because these skills are all to do with executive functions which is the area in our brain that’s responsible for things like planning, memory, prioritizing, and not getting distracted on regulating our emotions but I think a lot of people have problems with those things anyway. So I think we can all learn to get better at prioritizing and meeting deadlines.

So prioritizing tasks can be difficult because a person may struggle to recognize what’s important, for example, an autistic person might just think that everything’s important otherwise why would they be doing it. So, I think it’s really important to help someone recognize what important means and to determine the value of things because that will help you know what to do first.

Managing deadlines can be really hard because a person might have a bad sense of time. They might not realize how long something is going to take. Sometimes I have a problem where I might have a lot of tasks, for example when I was at university and I just kind of had the assumption that every task was going to take the same amount of time when if I had just maybe taken five minutes at the start of every week and seriously looked at each task and properly considered how long it was going to take, how difficult it was, I think that would have been a really good tip for me to use and for anyone to carry on with.

I’ve also read about something called The Urgency Important Matrix which was created by an American president. So, it’s all about working out which tasks are most important to do based on how important they are and how urgent they are and getting rid of things that are not urgent and not important. So, I find that really useful as well. I also really like to do tasks that are really quick done straight away because it gets some completed straight away and that can be really empowering and freeing.

One thing that was really important and helpful to me with regards to learning to prioritize was actually deciding in my life what was important to me because it’s really difficult to prioritize things if you have to do so many different things every day and your diary is really full. And one of the reasons my diary was always full is because I was doing too many things to please other people or I was doing things that I thought I should be doing rather than things that I actually wanted to do.

For example, spending a lot of time with friends or trying to make new friends when inside I knew that really wasn’t me and I needed a lot more alone time. So, as soon as I started thinking about what was seriously important to me, it really helped me sort of declutter my life and then I had a lot less to do each day. So that was really important. It’s okay to use some hours for other people sometimes but we should always remember that it’s our own needs that come first and if we’re not looking after our own needs, then we can’t really help or support other people either.

Another strategy that I always have when I prioritize is thinking about what’s the worst that will happen if I don’t do something and if the consequence is really bad then that’s an obvious sign that I should do something straight away. Another good way to prioritize or think about what’s important as well so if not doing a task will hold up other tasks for other people, that’s another way to make sure you know what to focus on. I think that’s really helpful as well.

DEBRA: Another area that you provide resources on your website is around diet and exercise and a lot of people struggle with finding the balance between diet and exercise and how to stay healthy, you got any tips that you could suggest to help people in that area?

ALIS: I totally relate to that. I think a lot of people over-complicate nutrition and being healthy. I think eating properly is really important for mental health. A lot of people can have quite bad moods and they don’t sleep well and they get distracted a lot. And a lot of that can be attributed to them not getting enough exercise or having a bad diet and they don’t always realize that. So, I think eating well is really important.

I really just focus on eating the five food groups in moderation and making sure I get enough protein (I’m a weightlifter so eating a lot of protein is really important) and healthy fats because they’re really good at helping you to concentrate. And I eat a lot of vegetables as well. But I don’t really think it should be more complicated than that because life is so complicated already, so I think that’s fine, and obviously, I eat sweet things as well.

DEBRA: As you’re a weight lifter what are the benefits of sports do you think?

ALIS: The benefit is obviously the physical benefits and depending on what’s you do, there’s also a really strong social benefit as well because it can be a means of making friends and socializing but there are other benefits as well that people might not necessarily realize because sports by its nature is very technical and in order to get better at it, you have to actually dedicate to do it on a regular basis. So, it teaches you a good work ethic really of being disciplined and practicing and being persistent  and they’re really, really important skills that transfer to other aspects of your life.

DEBRA: One of the things that you talk about is not expecting the world to change to fit around someone who has autism. People adapting in working together and understanding each other, and that’s sort of big area, isn’t it in general when it comes to additional needs, and the whole idea of how much do you have to adapt. Do you think that there have been changes in terms of people accepting differences? You mentioned very early about people becoming more aware, but do you think there’s more understanding or acceptance?

ALIS: Definitely. When I think back to when I was at school like twenty years ago or even ten years ago when I was at university, even in that time, I don’t really think anyone really knew the word autism, let alone knew what to do with it. So I think so much has changed in the last five years really. I hear a lot of stories now about families with children and their children get all the right support and I think autism is a very open subject now and no one would really be surprised if you talk about or said that you had it because it’s quite widespread now, that knowledge which is excellent. And in turn, I think that has made people more empathetic of people who are different which is really important.

I think that where the magic happens in life is where you embrace the natural strength and interest that a person has so that they can end up sharing their true talents with the world, I think that’s really important which is why I love what I do now because I think I love writing and it’s what I was made to do. So, being able to do it has been amazing. So I think nurturing someone so that they can use their differences, their uniqueness in a positive way is really important rather than trying to change them or make them more mainstream for example.

DEBRA: Do you think there are still stereotypes around autism and what people are like when they have autism and people make assumptions?

ALIS: Yes, I do. I think the worst assumption that kind of affects me is some people think, they assume that I won’t want to do some things so they won’t even bother inviting me out or something. Of course, they think, ‘Oh, she’s autistic, she might not want to do that or be too much for her’. Someone actually said they deliberately didn’t invite me because they thought it would be too much for me. I know they were well-meaning but I didn’t like that assumption. I would much prefer to be asked, you know what I mean?

DEBRA: Yes there’s a saying “If you’ve met one person with autism, you’ve met one person with autism.” and not everybody. That’s the reason I asked because I just wanted whether or not you thought that there are still assumptions.

ALIS: That’s another good point as well. I think, as you say, we should always remember that everyone is different and I think sometimes an assumption that autistic people are very quite and introverted and always want to be on their own (and even I thought that as well). It was only very recently that I realized that a lot of them are not like that, they’re actually very extroverted and chatty and they want friends, they just maybe don’t have the social skills to be able to do that. So I think that’s really important to make people aware of as well. And it’s sort of fascinates me how autism is so diverse in that way but it is!

DEBRA: It’s sort of as you say there’s so many different assumptions about people that are not necessarily true because as you say, someone would think that maybe someone with autism doesn’t want to go out and do things when in fact, they could be very sociable. And someone else would be the opposite and go ‘Actually I don’t want to do that’ and you don’t have to have autism to not wanto to go out all the time with other people either.

ALIS: I always think that we should remember that everyone has their own personality as well and is a human being at the end of the day.

DEBRA: I suppose someone gets a diagnosis then that’s when assumptions get made because if you are diagnosed with a particular additional need then everything that goes with that maybe takes away from your personality and makes you someone who has, for example, autism.

ALIS: I definitely agree with that and I think that’s one of the drawbacks of having a diagnosis and the decision to tell people that you have ASD is one to think about really because unfortunately, a lot of people will also change their behavior and their thinking about you as well once you have a diagnosis in a way you don’t want them to as well. So, that can be really hard.

DEBRA: Just finally then, can we talk a little bit about the resources that you have available and the kind of things that you do, you mentioned you did rap songs and things like that, but what else do you have available for people and where can they go to find them?

ALIS: If you go to our website thegirlwiththecurlyhair.co.uk, you’ll find all the resources there. So, as I said, I’m primarily an author that’s what I love to do and I have a lot of books and they’re all really well-reviewed and endorsed by the leading psychologist, Professor Tony Attwood. In the last couple of years, I’ve also started making animated short films and that’s been very exciting; all based on the character, the girl with the curly hair and how she interacts with the world around her. So, we have little series like A Day at Primary School for the Girl with the Curly Hair all the way going up to A Day at Work with the Girl with a Curly Hair.

And we do training as well around the UK, so we do courses and again, they’re all to do with autism but I think a lot of people can benefit from it as well and we’re just sort of going into unconscious bias and empathy training as well. And we do webinars so you can access our training from your home, your computer, or your mobile at home if you don’t live near to our training courses. As I said, I’ve just started making rap songs as well, so that’s awesome.

DEBRA: Is that just something that you decided you wanted to do and tried?

ALIS: When I was a teenager, I was really into rap music and I used to study lyrics for hours every day and I used to rap to my favorite songs and I sort of got out of it as I started working but I had an opportunity last year to make a theme song for The Curly Hair Project so that kind of set me off again and now I’m working on an album. So that’s very exciting. And I think it’s a really cool way to get the message across as well about autism because a few of the songs are about autism.

DEBRA: Yeah, people accept information in different ways, don’t they? So someone might find that an easier way to get the information than some other way.

ALIS: Yeah, definitely.

DEBRA: That’s a really good idea. So, just very quickly, so the plans for the future, rap album, more books?

ALIS: Can’t really think of any more books that I need to write. I kind of covered most of the topics for the time being but I always say that and then within a few months, I write something else because I can’t stop myself but yeah, definitely songs and I really want to make of each a length film as well. That’s my aim for the future.

DEBRA: About the Curly Hair Girl type thing?

ALIS: Yes, a proper like 60-72 animated films.

DEBRA: Alis, thank you so much for talking to me. I really appreciate. The website is amazing and obviously, I’ll put links to everything. Thank you very much for your time.

ALIS: Thank you so much.

DEBRA: Key takeaways? Well, this week I’m going to take a quote from Alis, “Where the magic happens in life is where you embrace the natural strengths and interests that the person has”. I couldn’t have said it better myself.

The Girl With The Curly Hair website
The Girl With The Curly Hair on Facebook

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

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Taking Off The Mask

Podcast Episode 66 It’s fine to be aware and even try and understand autism but actually what matters most is acceptance. This is the view of Kieran Rose, also known as The Autistic Advocate. Kieran has autism so he speaks from personal experiences and explains why he believes that acceptance is what is needed even more than awareness.

Kieran shares his personal journey and provides practical advice for both parents and young people with autism on how to manage the challenges they will face. He also discusses the way people with autism are often stereotyped and the impact that has. He also talks about what he sees as an industry that has been built around autism, and how that is actually contributing to delaying real change.

Kieran might be talking specifically about autism, but the really his message applies to everyone with an additional need. Barriers would fall much quicker, especially in things like employment, if people focused on positive acceptance of each individual’s strengths and their weaknesses, not just passive awareness.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 66 of the Journey Skills podcast. This week, I am talking to Kieran Rose who’s known as the Autistic Advocate. Kieran was diagnosed with autism later in life so he’s able to offer insights on how that feels and how autism impacted on his early life and how it impacts on his life today.

Not only that, Kieran, as the autistic advocate is on a mission to change perceptions about people with autism. He talks not about awareness or understanding but about acceptance. Because as he explains, he has autism and he still doesn’t understand it. As he also says, most people are actually aware of autism now so the next step now is acceptance. And accepting people as they are and for who they are.

This isn’t just relevant for anyone who has autism or any additional need; this is about every single one of us. As a parent of a young person with additional needs, I think her focus is about being able to do what every other person does and that comes straight back to acceptance of her for who she is.

You’ll also hear that Kieran has some very strong opinions on not only the way people with autism are stereotyped, but also the industry that’s been built around autism. This is definitely a podcast to get you thinking about some of the bigger issues.

DEBRA: Can you just tell me your story, your journey?

KIERAN: Absolutely. I was born in Essex in the UK and struggled all my life from pre-school. Kept a lot of it inside me and sort of always felt on the outside of everything but just kind of try to stuffed it within me and carry on going and carry on going. Until eventually, I was diagnosed as autistic at the age of twenty three which was sixteen/seventeen years ago.

And at that time, there were very few autistic adults publicly around. Obviously, the internet was just beginning back then so I didn’t really know what to do because everything that I read was about children and so none of it was relatable to me really. So I just popped it and carried on, went through a cycle with getting jobs, losing jobs, burning out, going through quite severe mental could kind of mental health crisis and things like that.

And then, when I was 33, I was constructively debarred from my job and my third baby on the way in obviously kind of panicking at that point and realized that I needed to sort myself out and find out what was going on with me.

So I stumbled across the autistic community online and learned an immense amount about myself and found so many relatable situations in people’s experiences that were the same as mine and eventually I kind of pushed on through that and have become an advocate. It’s my full time thing now to the point now where I also serve the social enterprise now to support parents and autistic adult like diagnosed autistic adults and I consult now for the North East Autism Society, Durham Constabulary and quite few organisations as well.

DEBRA: So, what kind of things do you do as an autism advocate?

KIERAN: Lots of autistic people advocate online and share their experiences and try to support parents where they can and I do those things but I also try to platform as many people as I can as well. So 3 of my blog I quite have guests blogs come on and I kind of blog while I was having this conversation so I have other autistic people come on share their story who don’t have a platform of their own or don’t want a platform of their own but just want to get something out.

I run campaigns. Last year, I did a social media campaign called #TakeTheMaskOff which is about autistic masking which is basically suppressing who we are and kind of going through life like that. I mean that was huge. That had to reach some blog 5 million over across all the social media platforms and things there. They’re a lot of public speaking and then the consultancy as well. I do training and helping organisations to support autistic people better.

DEBRA: So when you say training, what you do when you go in to organisations? So you’re making aware of some of the issues?

KIERAN: Yes. A lot of it is around talking to employers and like schools, businesses, public sector organisations, things like that. Going in and basically talking to them how they can support their autistic employees better or for schools, how can them support their people and students better. Things like that.

My training is very different to most autism training because a lot of autism training is very theory-based. It’s about raising awareness and I just crumple that up and throw it away. Theories are theories at the end of the day. They are effectively irrelevant. They don’t practically help people. So, I what I deliver is a lot about identity and the importance of acceptance over awareness because awareness is passive, it’s you know, you’re aware about something, that’s where you need to be. But acceptance is actually doing something. So a lot of my training is about collectiveness and actively supporting people.

DEBRA: What do you mean by acceptance?

KIERAN: Acceptance is things like well, autistic people we stim which is a physical movements, vocal movement, vocal repetition, things like that. We might make noises in things and I jiggle awful lot and a hand flat is kind of a.. the stims that I do were quite kind of traditionally what you’d expect them; the physical side of all autistic people would do.

So accepting that we have very different communication styles quite often we can be quite blunt and honest, very direct and honest and quite often just different behaviors and things which are sitting by society as abnormal. Where I come from a position of…I’m very big on neurodiversity. Neurodiversity explains that everybody in the world has slightly different brain, we have different personalities, we’re all different people but within that neurodiversity, so things like autism where our brains work very differently from the rest of the world. And a lot of what I talk about in acceptance is about accepting the fact that there are very different people in the world and just because they act differently, behave differently, speak differently, communicate differently, it doesn’t mean that they’re broken or wrong, it just means that they’re different.

DEBRA: You think we’re still at the awareness stage as opposed to the acceptance stage then, in general?

KIERAN: Yes, I think kind of. I think we just need to push past awareness completely, kind of just push it to one side. And pretty much everyone’s heard the word autism, that’s awareness. That’s it! Take that portion. Then someone acts in a way that you think is strange then you automatically start pre-judging things. Things like eye contact. A lot of autistic people don’t make eye contact with other people because it’s actually physically hurt us to do so but we judge them that. All those kind of prejudgments that come with people who act differently and acceptance is about placing the same to people you care. If someone is not looking at you, it doesn’t mean that they’re not listening.

DEBRA: So you’re saying that the sort of understanding is fine but if you’re not accepting people.. because you can understand why someone does it but you’re not necessarily accepting that it’s okay for them to do it?

KIERAN: Yes, absolutely. A lot of autistic advocates say about acceptance. People think that everybody has to understand autism. Nobody can really understand autism. I’ve been doing this my whole life and I don’t really understand autism still. Actually, we lack a lot of acceptance from a lot of people and we prejudge a lot of people and it all kind of fits into the same things.

DEBRA: Just back to the sort of thing where you said about work and you were working and then obviously didn’t keep jobs. Was that because of that general lack of acceptance of I guess of the way they were?

KIERAN: Yes, to a degree. I burnt out of college, couldn’t cope with college anymore, lots of sensory pressures and I was struggling to understand myself obviously at the time of things. And I got a job working for a customs and excise. It was two weeks on, two weeks off, just processing the IT forms so I can sit with my headphones and listen to music for two weeks and then go home for two weeks kind of thing.

It was absolutely perfect for me but then I got a promotion, transferred over to the office of fair trading so I had an hour and a half commuting to London and obviously walking through the big city and being an office with new people and it was a really, really strange environment as well because if you didn’t ask for work, you didn’t get work. So effectively, I could have sat in the office all day and done nothing which was a really hard thing for me to do because I like to be at projects and be active and so I burnt out of that.

And then started working in schools as a teaching assistant and that’s where a lot of my career’s been now, around education. But a lot around that was around before I disclose to people, attitudes change towards me. They treated me differently. Explain as I was going along and so like I was hiding, I was acting neuro typically and acting normally. Everything was fine then but the moment I stop doing that or the moment I told someone I was autistic, that was it. It was kind of everything changed. And I was pushed out at a lot of jobs, I would say my whole life after that. So that’s been a kind of path, being pushed away.

DEBRA: Can I just talk about that then, the idea of disclosure. Do you think that is something that we need to be talking about more so that people feel that they can say, ‘Actually, look I’ve these, I’ve got autism or I’ve got an additional need’. Do it upfront? Rather than and I’m kind of speaking a little bit of my own daughter thinking that she would rather that she didn’t say anything because she didn’t want people to prejudge her ability.

KIERAN: My attitude towards work if you have any kind of disability is to put on the application form. Autism is a kind of a gray area because it you know some people say that’s not a disability, some people say it is. I think it kind of is a mixture of both because society disables an awful lot of us. But there are aspects of autism which are kind of disabling so I think you need to be upfront about that and if an employee takes you to interview knowing that you’re autistic or knowing that you have a disability then at least they know that upfront they’re taking that on board.

I think a lot of the issues arise when people don’t want to disclose then they might get a job, they might make it through the interview, they might actually get into the workplace but then issue start coming up and they still don’t want to disclose but more issues start coming out and then it becomes a reason to get rid of you and then if you do disclose then obviously like I said it’s that prejudgment. There’s this assumption that goes with autism and work that autistic people are going to lead loads of financial adjustments and loads of support and it becomes a big effort for the employer to actually keep that person on or to take that person on.

When actually, that’s not true. I saw a lot of reasonable judgments are very easy to make and actually benefits lots in and lots down a little bit. You know, not having open plan offices where everybody’s talking across each other and phones are ringing and all those kind of little tiny things that make a huge difference to an autistic person. A lot of non-autistic people benefit from that as well.

So, a lot other things that when employers think about taking on autistic person, just a more mess for them, don’t be afraid that it’s going to cost you a fortune because actually the positive side of autistic people is quite often they’re very focused. You know, like I said about projects, lots of this love projects and things we can get a tiff into and manage and control, you know. So there are a lot of positives to employing autistic people but again it’s that pre-assumption that there’s negatives attached to it.

DEBRA: Back to there you saying that put it on the application form, but I guess a lot people’s mistake is that they go actually they don’t want to because I won’t even get to an interview for a start.

KIERAN: But then the question you got to ask yourself then is that if you put it on the application form and then they’re not going to give you an interview because of it, why would you want to work there in the first place? It’s a very basic and easy thing to say because obviously, there is a record statistically huge unemployment rate amongst autistic people.

Part of the reason for that is lots of autistic people who are in jobs aren’t engaging with the statistics about employment first of all because they’re safe. So that kind of excused it anyway. But to my mind, it’s kind of a lot of autistic people are out of work and part of the reason for that is because of employers and because of attitude. So, it is to admit to say kind of you know, you don’t want to work there, they’re not going to give you the job in the first place. What’s the point of them applying to them kind of thing.

It’s about weighing up your financial situation and weighing up your mental health because if you’re going to work for an employer that doesn’t want you there because you’re autistic, that’s going to break you. It really is. So, it’s kind of your life is worth much more than that.

DEBRA: Do you think it’s changed, our employers becoming better at making those reasonable adjustments?

KIERAN: Obviously, it very much depends on the employer. I think more people (this goes back to awareness thing) becoming aware of the benefits to employing autistic people and other neurodiverse people as well. Neurodiversity has become a bit of a buzz word in the in the world of work. They have a lot of employers use it but they don’t really understand what it means, either. I think things have improved but we have a very long way to go before autistic people are given equity.

DEBRA: Do you think that’s because of the employers or because when people getting I’m thinking it’s kind of like a macro/micro to me, but macro where you got the employers understanding that someone with autism can be a valuable employee and it doesn’t cost that much but when they get into the workplace, don’t you then need that acceptance of your fellow employees?

KIERAN: Absolutely. I think it’s huge societal issue. I talk a lot about there’s a negative narrative around autism and it’s driven by a lot of autism professionals, it’s driven historically by the diagnosis and about how autism has been looked at. Society has a very binary way of thinking. You’re either one thing or you’re not. Quite a lot a lot of aspects of society, binary thinking is something that autistic people are accused quite a lot. And a lot of it is a big projection I think. So, in terms of societal culture, autism is looked on negative thing, it’s looked on autistic people are incompetent, you know we can’t advocate for ourselves, we can’t talk for ourselves, there’s a lot of issues around the lack of support, the lack of money, autism, the rising diagnostic rate.

So the negative narrative, there’s lots of assumptions and expectations made around autistic people and there’s an autism industry that makes a huge amount of money out of autistic people and their families. It’s worth billions around the world. So there’s negativity that is carried around autism which is driven by this industry is actually having this social impact.

You know, all of this kind of thing that’s carried with it and that feeds into the whole employment thing as well because you put the word autism on the application form and the majority of the employers are going be like that runs through their heads, subconsciously. All of these negativity, they’re like ‘No, we’re not having that’ but then, you get into the workplace and maybe disclose to your employer or your coworkers, your colleagues, and then all of that negativity is running through their heads. Or they know a child that’s autistic who might have meltdowns, might have sensory needs, and it’s like ‘You don’t look like autistic, you’re not like this’ and so all of these kind of feeds into their head.

You’re absolutely right, this awareness (going back to the question) but you need that, you need the awareness from employers first of all, you need that understanding that there isn’t these negativities or hype and is actually not a rear reflection of is actually happening in the world. But from colleagues and things, you do need that acceptance, you need to understand that certain people just communicate differently. They might read emails rather than being spoken to. Or you know, they might like to sit quietly at lunch time and not coming to the staff room and things like that. It’s all these little tiny things that really add up and make a huge difference to autistic people and how happy they are.

DEBRA: Can you give some advice then for parents because kind of what you’re basically saying there is that there’s lots of negativity around autism in general, about the impact it has on the individual and the impact it has on the family. I know what you mentioned before about some employment (maybe some of the figures are a bit fudge) but genuinely, there’s very low rates of employment for young people with autism. So, can you give some ideas to parents and how they deal with that, their young people as well, what can they do to help change those ideas and think more positive for themselves?

KIERAN: Absolutely, I mean a lot of it like I said the negativity tends to stop when you stop accessing the diagnostic pathway and we have a child confessing by the mental children health teams are that there’s no support. There’s a lot of negativity, you know, so it’s like if you get a diagnosis no one’s going to be there to help you at the other end. So, a lot of the support comes around peer support, from parents and things like that but there are amazing parents in this world and I work with a lot of amazing parents that don’t understand their children necessarily but are desperate to and really want to, want to make that difference in their lives but with the problem with things like peer support groups is that a lot of the negativity that I spoke about before can be passed around. Those peer support groups and it becomes very like negative cycle. And that affects how you view your child and affects how you view their futures as well. Because you look at a small child and you make assumptions about, you know, you have expectations about what you want for them. Their pathway is they’re going to school, they get a job, they got a family, you know, your grandchildren and you have this whole life mapped out for your child before they’re even born really.

And a disable child comes into that mix and then smashes all those thoughts. You go for a kind of grieving process for that which is absolutely natural. You now have to live your life very differently but a lot about supporting that child is understanding that what you see in your child right now isn’t necessarily what you’re going to see in them when they’re fifteen or when they’re twenty-five or when they’re forty-five. You know, people grow. Everybody grows and changes over the course of their lives and so you look at your child as a child all your life and you make assumptions about them but you can’t do that.

What you need to do is to instil in them positivity about themselves. You need to help them understand themselves as best you can. I mean for autistic kids, the best way for them to learn is for their parents to go and engage with the autistic community and so many blogs and vlogs and people doing things like I’m doing all over the world. So, there’s so much information out there to be found which is really positive, really engaging, practical advice and things and instilling that in your child, making them understand that autism isn’t just part of them, it’s their whole neurology.

I talk about autism being neurology. Autism is neurology and neurology describes brain, nervous system, fingertips to toes kind of thing. All of that is autism. Your whole child is autistic. That’s their neurology. They have completely different way of thinking, completely body works in a very different way, they process information in a very different way and trying to carve a part of that out is actually really negative for that person because it’s smashing their identity effectively.

And I spoke about masking earlier and lots of parents will understand what masking is and lots of autistic children go to school, they buckle everything up for the day and then unleash it when they get home or hold it in for years or whatever it is that they do. And it’s about helping them understand that they don’t have to mask, that what other people think really isn’t that important, that they need to be happy within themselves and accept themselves. Keep yourself safe, yes, that’s the most important thing but just that understanding of themselves and about recognizing, embracing that autistic identity is really, really important.

DEBRA: As an advocate, where do you think we’re going in terms of acceptance?

KIERAN: I see it at the minute there are, not being binary, but there are kind of two trains; one struggling forward with positivity, understanding, wanting to accept autistic people and there’s another one channelling backwards, especially in the UK as well. The reason the education system is just tumbling bounce into behaviour and zero tolerance, DNA test with its 10 year plan is once it’s roll out behaviour therapy, the front row treatment for autistic children.

So, you have this one train that’s going forward and understanding that autistic people needs to be accepted, the difference is okay, that everybody needs to wants to compromise together and then you have this other train which is about making autistic people behave, making them acting the way that isn’t autistic. At the minute I think, in the UK especially we’re in a really kind of balancing on a knife edge of where to go and I’m hoping because just from the reactions of things that happen on social media or on online, a lot of people hopefully are changing their tuner and jumping on the acceptance train rather than heading backwards, because there’s a legacy or the impact of normalizations of things as we do have a huge suicide rate amongst the autistic community.

All of these things, all of these negativities are feeding into early death rates and mental health issues and things, so embracing the positive side of it, not just accepting. You know, obviously like I said, there are disabling aspects and there are negative points to being autistic, but it’s about not focusing on those all the time and actually looking at these people and say, “Oh hold on a minute, you have strengths. You can do this. You’re amazing at this. Let’s embrace that. Let’s let that lead. Let’s follow that lead. You look at what you need to make yourself happy.” It’s about shifting that attitudes. So like I said, I’m hopeful. It’s going to take a long time.

DEBRA: Do you think that those inspiring stories of someone who’s done well that has autism, do they help?

KIERAN: It’s kind of a 50/50 thing. I think sometimes it helps parents to look at other children or autistic adults to say ‘You know you’ve achieved something’ but I think the problem is, from my perspective and from an autistic person’s perspective, you see things like that and it’s kind of… There was one I saw the other day and it was the ffirst autistic person to pass the bar in the US to become a lawyer and I was like I’m sure there’s plenty of other autistic people that have passed that bar.

You know, it’s become a kind of “Well done, you’ve done this despite being autistic”. And probably because she was autistic that she passed the bar, you know, because of her intense focus or her ability to do these things and to have a creative and out of the box way of thinking. They’re the huge skills. It’s inspiring for some people but then it also has this really negative effects on the community, on the autistic community. Everyone who’s disable has that kind of negative kind of connotations to it and that child rightness, you know what I said before about kind of making assumptions about people’s lives and it’s that kind that feeds into that. The masking plays into that because it’s assumed that we go out of autism, but we never do because it’s us.

DEBRA: Those inspiring stories always strike me as what you just said about a well done you rather than actually that’s to be expected.

KIERAN: The connotation there is that you have the assumption that someone who’s autistic could never do that thing. When you actually look at it from that perspective, it’s actually a really, really negative thing. It’s really obviously the achievement should be applauded, everybody’s achievement should be applauded but you know, when you see something like that around social media and there’s 10 million people saying ,clapping maybe it’s good for that person but as a way of changing that societal filter power autism is looked at, it’s actually negative.

DEBRA: Yes, because it’s almost like what you said about that person is kind of fitted into a box, haven’t they? And had done a job that other people do so therefore they’re okay, people say fit in to that box as supposed to doing something a bit different and being congratulated for that. Or, you know, that sort of job is seen as being aspirational, isn’t it?

KIERAN: Absolutely, yes, it plays into a kind of a whole hierarchical thing, doesn’t it? And that we’re having that culture. You’d never celebrate an autistic person being a bean man, why not? Why would you have these assumptions about certain job. This is why I do what I do. It’s obviously very focused on autism but it’s not just about that.

I see it as a civil rights movement. It really, really is. And say alongside like feminism, race issues and it’s kind of that acceptance thing there as well because obviously you wouldn’t celebrate a woman for becoming a lawyer. The whole 10 million people on social media don’t applaud that so why would you assume it with other things as well? It’s really that kind of that thing.

DEBRA: You’ve kind of touched on tips for parents in that but what about a young person who’s struggling at the moment, going through some of the things like you went through. What kind of things can you say to them to help them or maybe their parents can tell them?

KIERAN: It’s obviously very hard in the moment, thinking back to where I was in, just a trigger warning for your listeners. I took an overdose at 14. It was because I’d muffed for years, I’ve never melted down, I was shut down, I’m selectively mute as well so I went a long period of that without actually speaking to people and sometimes week. And all of that related to kind of anxiety and things and I understand in the moment, as a child and feeling the way that I did, I couldn’t see that there was a way through that or way out of it.

It’s taken me a very long time to get to where I am and to fully kind of fully accept myself and understand there are just some things that I can’t do and there are things that I need help with and that’s not necessarily my fault. And a lot of that is about blame. A lot of autistic children aren’t given the opportunity to learn about themselves. A child gets a diagnosis, teachers get training, parents get training (it might not be very good training) but you know, they have general awareness, and the one person that never gets any training is the child. It’s expected that the parents going to pass all this information on to the child. It’s kind of it’s difficult for parents because the parents can’t get their heads around it either. And so a lot of it is about learning to accept yourself and just be yourself.

And again it’s a very easy and simple thing for me to say because it took me so long to do it but out there right now is a wealth of support and information that I never had at a young age. And I think a lot of parents don’t actually realize how much positive information is out there. I would find blogs by autistic adults and there are blogs by autistic young people, autistic teenagers, all the people who are out there putting themselves on the line and putting their life out there in public but that’s all out there for you to learn from and there are such a wealth of positive brilliance out there for you to learn from.

DEBRA: Kieran, thank you so much for your time.

KIERAN: Lovely talking to you.

DEBRA: Key takeaway? Acceptance over awareness and acceptance over understanding. It’s nice to have the first two, but in reality, only acceptance will move things forward especially when it comes to things like work for young people with additional needs.

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Collaborating For The Future

Podcast Episode 58  Any journey is made easier by walking with others. That is the focus of this episode – the impact of collaboration with, in this case, the theater as the space where the collaboration starts Continue reading

Striking Balance

I like to hold books. I like simple, beautiful covers and plain, clear fonts. I like waxy heavy book open in sunshinecardstock that sticks to my hands. I like pages that hold some weight. I like the way words scrape meat off bones. So I try, in the dark hours of mornings, to spend some time with words, both reading and then writing. The window for my own pursuits is limited because I am a parent with a full time job and like most parents my greatest obligation is to my sons, the middle of whom is twenty and has autism.

Of course, it has always been my desire to be equally attentive to all three. Communication with Oldest Son (who is shacked up with his girlfriend in a city an hour and a half away, and is doing his best to avoid my guidance) tends to be in pithy text messages like: “Why do people wear socks with sandals?” “Reference Mom’s pinky toes.” “*Nauseated face emoji.*” I’d prefer an actual listening-to-his- voice type of conversation on the telephone machine, but I’m told that is passé.

Middle Son is like his mom, a morning person. He rises on an internal clock at precisely 7am during these summer months between graduation from a vocational program and the procurement of what we hope to be a meaningful position alongside neurotypical peers. When I hear Middle’s feet hit the floor, my train of thought tends to arrive, with a squeaky halt, at the nearest station; but not because he needs me any longer to navigate breakfast.

After calling a good morning he gets straight to the business of creation. Depending on what is in the refrigerator, he will collect suitable cooking tools and assemble ingredients. This morning he uses leftovers from his dad’s homemade tortilla dinner. Before setting the frying pan on the burner, he selects a tomato from the windowsill, slices it uniformly, then quarters each slice. He methodically chops a portion of onion and green pepper and gets out a bag of grated cheese. While he works, Middle practices conversations that I cannot help but listen to. Most of them begin with phrases like, “Oh, I’m sorry…” or “Excuse me, I didn’t understand…” The words that trail after are not discernable, but I have already left my words, and now I dwell in the full time job of fretting over all it will entail to conquer this journey of living.

After he plates his breakfast, if Middle is particularly pleased with the presentation, he finds me to share in the delight of food arranged beautifully. If there were a restaurant somewhere that was not concerned over having things done quickly, a job in the culinary field might be the best and most logical position. But for Middle, food preparation is more a hobby. Something he enjoys. And I’d hate for that joy to be muddled up with other people’s expectations over trivialities such as time.

When he takes his meal into the den, I hear the television click on which causes my concentration to compete with Spongebob or a Tom & Jerry soundtrack. If he comes in to say, “Hey, good news…” I don’t have the luxury of saying, “Not now! I’m trying to write!” I must stop what I am doing, and look into his eyes and listen. With all my heart. To something like, “New episodes begin on the Cartoon Network on September 3rd.” Because I know so many parents are wishing for such wonderful distractions. Because of all people in the world, I may be the only one who speaks his language. Because when he tells me about the episode where Spongebob gets fired from his job at the Krusty Krab, Middle’s eyes are nervous, even with me, worrying about whether he is speaking with “regular person” clarity.

Since we got his diagnosis at 2 ½, I have been determined to save Middle from becoming Boo Radley, only able to love from a distance. Only able to share his deep understanding through gestures left like talismans in a hollow tree. Lonely. Lonely frightens me most. Lonely is a horrible suffering. You don’t even get to blame somebody when Lonely is the bully. There is only the victim.

Youngest son is still in high school. Because he has a difficult time with beginnings, I read to him a couple days ago the first chapters of his summer novel assignment, Of Mice and Men. A lifetime after my initial reading, I come to the revelation that Lennie is quite complex. Perhaps even more complex than George Wilson. “This book makes me sad,” I tell Youngest. “Mom, it’s not that sad,” he almost scoffs. “Are you and Middle, George and Lennie?” I ask. He just smiles.

Youngest has always smiled when he was uncomfortable or frightened. It looked like a downright smirk when he was in elementary school – would get him into deeper trouble from someone who didn’t know him. And I didn’t know him for the longest time. So wrapped up in Middle Son, so wrapped up in all things autism.

Once on a weekend visit to my mother’s house, I happened upon a book on her shelf entitled The History of Names from the Bible. “It was a gift,” she explained. Leafing through, I found our youngest son’s name. There on the edge of her yellow chintz sofa, I remember a rush of guilt. “We weren’t trying to replace Middle, were we?” I asked. “Of course not,” she lied.

“Hey, Mom, I took my morning medicine and now I’m going to take a shower” calls Middle from the kitchen. “Thanks for telling me,” I say, and up he goes.

At this point, I will get my second morning for about half an hour, before proceeding with the less-inspired work of my day. Middle tiptoes up the stairs. He is quiet because Mom is writing and she needs to concentrate. But my guilt is big and so noisy.



Tracy has been a high school teacher for over 30 years and currently teaches creative writing and journalism.