Tag Archives: autism

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.

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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.

Resources
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.

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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.

Resources
The Autistic Advocate Website
The Autistic Advocate 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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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.

Invictus Enterprises: Building The Steps Into Work

Podcast Episode 46. What happens to young people with additional needs when they finish full-time education? How will they find employment? How will they cope on their own throughout adulthood? Continue reading

Austen’s Autistic Adventures

School is a bit like a job – there’s the getting up each morning, the travel there, the demanding  boss aka teacher, the work, the socialising and the travel home. School occupies our children’s days. But what happens when your child comes to the end of school? What happens if there is nowhere to go?

Nothing?

For many their days are filled with boredom. One mother in Texas, however, has decided to change this. Jamie Wheeler runs Austen’s Autistic Adventures, a social group where people over the age of 18 can meet friends and engage in fun activities to develop their social skills.

Jamie’s Journey
When Jamie’s daughter, Austen,  graduated from High School, she lost her entire peer group as people moved on with the next stages of their lives. Where her daughter had once found community in the school choir and theatre groups, there was suddenly a void.

Jamie felt like she’d hit a brick wall and certainly hit an access barrier to services for post-18-year olds with additional needs. Determined to ensure that her daughter didn’t feel abandoned, she gave up her career as a college professor to set up the group.

For Jamie, it was about launching a program that was financially accessible with daily activities to allow members to experience real friendship relationships and reap the benefits of being part of a social group.

Another crucial component to the social interaction was having people from the local community sharing their skills and passion with members. This has meant things like visiting an art studio, a chef coming in to cook, and a tour of a local corporate office. Jamie tries to mix up the member’s experiences so they’re always being challenged in new social situations. She tells a wonderful story in the Friendships Matter Podcast of how young people learnt to interact and take turns while stuck in traffic on the way to (and from!) one particular event.

Jamie believes that daily interaction with others, both on and off the spectrum, improves social functioning. This is the case at home and in the community. Furthermore, by going out every day, the community at large gets to know people with autism as individuals, which leads to more, and better, employment and volunteer opportunities.

Overcoming the challenges
The main struggle Jamie faced when setting up was not knowing where to find people. She faced this challenge head on by using social media, setting up a website and getting the program out by word of mouth.

At the moment, Jamie’s biggest challenge is funding, it’s almost her full-time job, as they try to keep the prices for the members as low as possible. The key for Jamie now is to push forward with becoming a public, rather than private entity, and that will then open up more grant opportunities. She doesn’t worry about things not working out, but there can be nail-biting moments from a funding perspective!

Future plans
Jamie is in talks with an initiative called 29 Acres in Dallas to provide the social component to compliment the 29 Acres housing project. She also has a passion for teaching her working model to others interested in doing something similar in their local community.

Jamie’s top tips for setting up a similar inititiave:
1. Stay community-based
2. Talk to local small businesses for advice/help
3. Have a social media presence
4. Be dedicated

For Jamie, the key is getting the members out of their comfort zones and realising that things change dependant on the time and the place. By shaking up the day to include new things, she has found that their confidence soars. Jamie also emphasises the important of keeping the events to less than 2 hours to ensure that members don’t get overwhelmed.

And finally
The importance of community cannot be underestimated when we try to consider how to solve many of the problems that our young people with additional needs face in today’s society. Jamie put it perfectly when she spoke about friendships and specifically, that no matter who we are, everyone wants friends and that it’s a misconception that people on the spectrum don’t want friends. In Jamie’s first-hand experience, she sees young people actively looking at who is going to each event to check if their friends will be there too, because they have built that crucial friendship bond. Jamie shows us what focus and enthusiasm can achieve, there is no doubt her future plans will be a success and continue to make a massive difference to young people’s daily lives.

If you have a similar story to tell I’m very keen to hear from you. Please get in touch because so many others can learn and benefit from your experiences.