Date: 8th of September 2016
Talk given in Lancaster at the Disability Studies Conference
There is an audio version of this talk available. It is the actual file of what I delivered on that day.
Story time
Number 1
I am sitting in this room, listening to this person.
At the end, I put my hand up.
I have a question, at the end.
Or as is sometimes the case, maybe I say the unpopular “I don’t really have a question, more of a comment…”
It doesn’t really matter.
What I remember is I say I am autistic.
And when she replies to me, she calls me a “success story”.
I just nod because it’s the easy option.
But later, I wish I’d responded and asked (see, a real question this time, definitely not just a comment):
“What makes you think I am a success story? You have never met me before. How do you know I have any form of success? What even is success?”
I suspect what made her say that is that I am sitting there, at an academic conference.
As if that makes me successful.
It doesn’t matter how many letters I can put behind my name after I get the diplomas.
You know nothing about me.
And I won’t be your success story.
Story time
Number 2
I am a youth club leader for an autistic group of young people. I get an enquiry from a school asking for more details about our club so they can advertise it to parents.
Comes the question:
“Do you teach them social skills?”
I don’t really understand what they mean. I reply something polite: we do activities, and we hang out together.
I want to add:
“Is that social enough for you? How do you teach social skills? What even are social skills?”
I suspect they mean do you teach them to look and sound less autistic? Maybe I’m being unfair, maybe that’s not what they mean at all. But when I sit in academic papers and they talk about social skills, that’s what they generally talk about.
I remember this paper I read which said Social Skills Training “has been reported to be an effective component of treatment regimens for many childhood disorders […] and is an appealing intervention approach for use with children with ASD”.
I remember that kid’s Education, Health and Care Plan, which described autistic traits without ever saying the word autism, and talked about how awful it was for other people to “cope” with this kid because of this kid’s communication patterns.
I don’t reject the idea of gaining skills in something.
But the way they talk about how autistics need social skills because of all our deficits and impairments makes me sick.
No, I don’t teach them social skills.
Story time
Number 3
It’s another one of those times when I’ve been somewhere as an autistic adult, talking about my experience to a room that is full of a mixture of professionals, parents, members of the public.
Whatever the mixture, there are always people who come to see me at the end and thank me.
They tend to be those who have only ever met and worked with autistic children. Or they know autistic adults, and felt the way I shared my experience helped them. Sometimes the compliment is backhanded: “I found my autistic daughter-in-law really annoying, but the things you’ve said make me feel better about her”.
I just nod because it’s the easy option.
They are always very nice, and feel they have learnt a lot from me.
Sometimes their kindness makes me gaslight myself: is the world actually full of sensible people who are wonderful to autistic people, and I am inventing a side-world where many autistic people are treated badly?
But then I remember what I know and what I live, and I keep up the fight.
Introduction
These three stories form part of what prompted me to write this paper proposal a few months ago. I am a PhD Candidate at the University of Bristol, in Deaf History, but I am here with my “autistic activist” hat, rather than my academic hat. These stories are around me being perceived as a successful person, my feelings when people assume that autistic people need to be taught certain things, and the assumptions people make about me. That because I work with autistic youth, I am not autistic. The fact that I am perceived as having certain abilities that somehow make people relate to what I say about autism.
I have a background in teaching, and spent a year teaching French in a special school, where most of the children were autistic. Alongside my PhD, I am a youth club leader in a club full of wonderful autistic young people ranging from 8 to 19 years old. I have experience being around autistic children who sort of bask in the warmth of being with other autistic peers all day, and also children who are mainstreamed and have very little access to other autistic peers.
In this paper, I want to talk about identity. I really struggled writing it because of worries over misrepresenting my community, saying things that are obvious to everyone and basically my own insecurities. So I want to emphasise again that what I am saying is based on my own reflections, my own knowledge as a member of the autistic community, and is not research I have carried out. Whenever I mention someone, I won’t be mentioning an actual real person – I have created these “people” out of various people I know, so as not to be talking about someone that I know and that could be identifiable.
Who gets to build their identity?
The first point I want to address is… Who *gets* to build their identity? Going even further, who is considered to even *have* an identity? In the title of my paper I talk about “young autistics” as if they are a homogeneous group, which they aren’t.
I’m not even going to try and define what identity means here beyond simply thinking of the way someone perceives themselves and what makes them who they are. I am just considering that basic level, not going into academic theory around identity.
Something that I have noticed, is that when a child or teenager is labelled as having “special needs”, suddenly the label tends to take up a lot of room. There is a huge emphasis around “What is going to happen to them? What therapies are being put in place?”
It’s like having extra English lessons, or learning social skills, or behaviour training become the most important thing in the world, because this kid needs extra support and unless someone is clued in on disability rights in the people around them, the idea of disability being a part of one’s identity can be a completely alien concept. Many of the people working around them may have never met an autistic adult.
Of course I am talking as though there are no autistic people working with autistic youth. I know there are, because I am one of them, but mostly, the people working around an autistic person are most likely to be non-autistic, so different means need to be sought to reach the expertise of autistic adults.
Story time: I am talking to a special needs teacher and mention the idea of role models. I ask: do you make it so these kids meet disabled adults? They say: we don’t have time for that.
And in relation to that there is also a whole aspect where professionals and nondisabled parents don’t seem to think about the expertise of other adults who have got the same disability as this child, at all. This is especially prevalent around autism, where because of the “spectrum” aspect of autism, people will consider autism to be on a range from “low-functioning” to “high-functioning”, except that isn’t how the spectrum works. It just means that different autistic traits affect autistic people differently, and emphasises how different we are from each other. That sort of idea that certain autistics belong to a completely different category to other autistics has led to autistic activists raise issues such as telling people who say “you can’t understand, you’re not like my child” that actually “we are like your child”. When you meet an autistic adult, you have no idea what we were like when we were children.
So I think those ideas have been particularly harmful in terms of building one’s identity. Because somehow, if a young autistic is nonverbal, they’re considered as not being able to think of their identity. If a young autistic has a learning disability, it means “oh, they don’t have the cognitive ability to even understand what autism is”. It’s like the more the impairments and the autism of the person are visible, the less they are a human who does have an identity, who does have thoughts about themselves. Some of the greatest things I have heard about autism have been expressed by nonverbal autistics who rarely get listened to. Some of the worst things I have heard about autism have been expressed by autistics who think they are superior to others and have a big forum of people listening to them.
So I do want to emphasise that when I think of autistic people, I think about ALL OF US. I may not have experiences that match ALL OF US because I am just one person, but I think of autistic people with learning disabilities, autistic people who are nonverbal, autistic people who have multiple other disabilities. I want my autistic community to be inclusive.
When an autistic young person is going through teenage years, through adolescence, and all that it entails, I’ve found a big response is to make it all about autism. Autism is pervasive, it affects us on all levels, that’s why I say I am autistic, not with autism, because I don’t leave my autism at home if I don’t feel like bringing it to the party. But sometimes, I found myself hearing staff talking about an autistic pupil and think “OH MY GOSH. DO YOU NOT REALISE THIS KID IS LITERALLY JUST BEING A BLOODY TEENAGER!”
One of the comments that autistic activists sometimes get is “well of course you can think about identity, because you do this, and that, and you are articulate”. And of course, I have certain skills, and I am articulate, but I am still autistic.
Identity is not an optional thing. Everyone has an identity.
Who gets to be a role model?
Flip of the coin:
When input IS sought, who gets to give it?
Story time: Oh LC, I have this group of autistic teenagers. They don’t see beyond being at school, because they’ve never met autistic adults. I want them to meet autistic adults who are successful, such as yourself, because no one in our staff is autistic so I feel like a fraud telling them it’s going to be okay.
The thought is lovely. I am happy that this person is thinking about this, and realising she is out of her depth.
But I ask myself:
– why is no one on your staff autistic?
I ask myself:
– why are you seeking me out?
– how honest will I be allowed to be with these young people?
Because see, when you rarely get to meet a role model, can this role model really be honest about their experience? Am I expected to tell them it’ll all be okay, so that they can feel reassured? Or can I talk about the crap, too?
——
Would you seek out any of my nonverbal friends? Would you seek out any of my friends who need an extensive care package? Would you seek me out if you knew me better and knew what I go through?
I have no idea.
Oh also, by the way, have you thought about payment? Because apparently I’m supposed to give my time and energy for free.
But I know that autistic youth are starved for role models. And how are they supposed to become someone, if they have never seen someone like them? There are SO MANY of us who thought we would grow out of our disability, because we’d never seen people like us who are older?
I wasn’t diagnosed until adulthood, so I thought “okay surely when I turn 20 I won’t be the odd one out again” and on and on and on. And even though getting diagnosed was a huge relief, there was also this realisation: I am never going to grow out of this. This is me. And part of me thought: great, I am now explainable.
The other part thought: shit, this is forever.
And that’s a huge thing to address: who is considered to have made it enough that they can be a role model?
Who is considered successful enough that they can be a role model?
Because when you do see autistic representation, it tends to be people who are considered to have made it. People who have overcome, and who use their autism in a special way. What about the majority of us, those who are just “average”? Are we good enough for the media? Are we good enough to be considered human?
I think a really important thing I’ve learnt by being around other autistic adults, and building my own identity, is that if you look at yourself through a neurotypical lens, you can feel like a pretty big failure.
But once I started seeing myself through autistic standards, I thought. Heck, I’m pretty good at being autistic.
This leads me to talking about values.
My autistic values
At first, I would put a lot of pressure on myself. Like I had to be this perfect example of autism because I knew these kids didn’t meet many other autistic people.
Then I realised: okay, I am just one person.
So what do I model when I am around them?
I just model existence.
One of the powerful things I’ve done is to express my needs. Because too often, autistic people are led to being compliant, and not express their needs.
So, if I’m struggling with overload, I put my noise cancelling headphones on. And when they ask questions about them, I answer.
If I’ve had a hard day, and they ask me about my day: I tell them. In child-friendly terms, but I tell them.
I show them what I do when things go wrong. I tell them what I do when things go wrong.
I’ve seen autistic children being given tools to help them cope, but never being explained what coping mechanisms they could have. “Stick a pair of ear defenders in their hand, and that’ll be it”, with no explanation or modelling of why or how this can be an effective tool to use.
My last point is about autistic values. I was thinking to myself: what do I want to share with autistic youth when I’m around them?
One of the first points is… I’m going to read literally what I wrote: how not to be a dick to other autistics. Because unfortunately, there is a subset of autistic people who think they are superior because they can talk. They want to separate themselves for autistic people who don’t talk.
In my group, we do have various people. We might have someone who can cope with ten minutes around the group and then needs to go. But the whole group respects his needs.
I want them to think that they are no more than a human, but also no less than a human. As soon as any of my kids say “oh everyone else is stupid”, or “I don’t like this person because of this”, I think: rewind for a second. What is it you actually don’t like about this person?
I want them to see how they are wonderful autistic people, and I want them to know the variety of our community.
Lots of autistic people are mainstreamed and some in a special school who are still outliers amongst the outliers. You know, the kids who are just a bit too extra different from the other autistic kids and are just out of the loop. And I want them to be inclusive.
I want to teach them about consent and about boundaries.
And I find that a lot of these things just happen by being around other autistic people. For example seeing that everyone is of value. But some have to be made explicit. I’ll have someone who may be very in your face and other people struggle with her. But I am trying to teach them that it is not okay to exclude her just because she is a bit too in your face. I want them to learn to say “please go away” and it’s the kind of things I model.
And I also want to teach them not to constantly apologise for themselves. And I feel like a fraud when I do that because I apologise every two seconds for existing. But when I talk to one of my kids and they say “oh sorry”, I tell them there is nothing to be sorry about.
So in my club, one of the things that was really useful in talking about autism was to make a zine. I didn’t give them many guidelines and they came up with really cool stuff. Sone of my members love learning about autism. Some of them don’t really care that much. It was a really good project in terms of fostering discussion. It was a very slow process but it was wonderful to get them to talk about autism amongst themselves.
When I started at the club, I hadn’t disclosed my diagnosis. Some of them realised I was autistic when we were doing the zine. Some of them said “I should’ve known! You’re weird and bonkers”
As a bit of a conclusion, I am committed to autistic youth because I care. But I also think exchanges can be made between autistic youth and autistic adults. It was actually two autistic teens who started telling me “do you think you might be autistic?”. I don’t want to live in a world where going to mainstream club is the best outcome. What about their identity? What about being around people like them? As an autistic adult it’s been one of the best things I could’ve done for my life.
So I think the importance of autistic peers really really needs to be taken into account. But at the same time, we need to think about: who gets to think about their identity, and who gets to be a role model.
imnotrepeatingmyself.wordpress.com 