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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