Written by Sam Wonfor

In The News

Standing up and out for autism

As World Autism Awareness Day approaches on 2 April, Sam Wonfor talks to the rather fantastic Robyn Steward, who has made it her business to speak up for people on the spectrum and help those who aren’t to understand them better – for everyone’s benefit.

Robyn Steward after winning her prize at the National Autistic Society Autism Professionals Awards.

Robyn Steward after winning her prize at the National Autistic Society Autism Professionals Awards.

Robyn Steward was born three months early and lives independently in London with 10 disabilities including cerebral palsy, dyslexia, dyspraxia, prosopagnosia (face blindness) and lax ligaments. She was diagnosed with Asperger’s Syndrome, which is on the autism spectrum, when she was 11.

Following a difficult education, she went on to become a mentor and autism trainer, artist, musician and broadcaster. She also wrote a book for women with autism: The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum following her own experience of being raped when she was 20.

Now 28, Robyn has just won the Outstanding Achievement by an Individual on the Autism Spectrum award, in this year’s National Autistic Society Autism Professionals Awards and was the first woman with autism to perform at this year’s Women of the World Festival at the Southbank Centre.

I was diagnosed with Asperger’s Syndrome – so basically autism without a learning disability – at the end of primary school. That’s quite late really. It took three years to get a diagnosis.

Girls are often better at masking it.

I definitely have to think about why people do some things and not others, and what their intentions might be. I struggle with unwritten rules and I really struggle to read social cues. I find busy crowded situations very difficult. I find it difficult to read people’s facial expressions and to read information from their eyes.

I love having conversations with people, but I’m not very good at starting them.

What I mean to say doesn’t always come out of my mouth.

I’m really good at concentrating on things for long periods of time. When I wrote my book (The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum), I wrote 45,000 words of it in 10 days.

“People presume that if someone doesn’t speak, then they’ve got nothing to say, and that’s definitely not true.”

I have lots of friends now – I feel lucky that I got into the arts community – but I definitely struggled to make friends and also maintain those friendships when I was younger.

When I got the diagnosis, it didn’t make a lot of difference. With that age group, you need to teach somebody to be proud of who they are and that autism is part of them.

I got some support in terms of a social skills group, but I don’t know that they knew that much about autism. Learning social skills is not about trying to make someone into a neurotypical – or non-autistic – person; it’s about giving some skills that they can switch on and off.

It’s like learning how to play football. Lots of people know how to play football, but when they’re on the tube they choose not to use that skill.

I got bullied at school like a lot of other young people with autism. An example I use in a lot of my talks is one day I went to class and the phone was ringing. This group of kids came up to me and told me to answer the phone.

I had no abilities to read the social cues or the context. I was very gullible and trusting. I knew there was a rule about the phone, so what I decided to do was to pick the phone up and put it down again without saying anything. I thought that was middle ground. The teacher never had me back in her classroom again.

When I went to high school it was absolutely terrible. I got bullied really badly – children locking me in the toilet, staring at me over the cubicle, making my life very unpleasant, scrawling stuff on the local bus shelter that I’d have to walk past.

These kinds of experiences are really common for young people on the spectrum. It’s awful that people are going through this. From working with a lot of young people on the spectrum, I know they just want to fit in, and have friends, and do all the things everybody else wants to do.

“Sometimes you’ll hear people say, ‘Oh, I’ve met someone with autism’ as if everyone with autism is going to be the same.”

I left school when I was 15. Well, I got asked to leave politely. I don’t think they were horrible people. I just think they didn’t understand. I didn’t feel very happy or safe in school. I didn’t have much of a concept of who I was. I was very different and it was very difficult to be a different person.

When I went to college, that was much better because I was studying IT, which is my favourite subject. They also saved my favourite sandwich for me at lunchtime for maybe the first two terms and a half. That was a small thing which was really helpful for me.

Also, I was able to listen to music when I needed to, if I was in a really busy place. I still do that now. If I’m going from one part of the tube station to another…putting my headphones in and listening to music is an important coping mechanism for me.

I went to uni for a year and volunteered to mentor and work with young people on the autism spectrum. After a while people started asking to pay me to work with their son or daughter.

I became aware of the National Autistic Society (NAS) and was really impressed with what they were doing. I asked if I could help. A few months after that I did BBC News 24 and Channel Four News and have spoken a lot about issues affecting people on the spectrum since.

I applied to the Charlie Bayne Travel Trust (which helps disabled students to travel) and went to Los Angeles, to UCLA. I did a talk and looked at their programmes there. Every year since I’ve gone to America and different places to talk to people about autism.

I’ve been to Russia and Canada, Europe and Australia. I’ve done a lot of speaking and learning, which gives me a really holistic view of autism and means I can share everything I’ve learned with other people.

I think it would be really good if neurotypical people could:

• Know that everyone is different. Sometimes you’ll hear people say, ‘Oh, I’ve met someone with autism’ as if everyone with autism is going to be the same
• Know that girls can have autism and mask it
• Know it’s rude to say ‘suffering with autism’
• Know that that autism is a difference in the wiring of the brain and that this can mean positives as well as negatives
• Be aware that this is a human being who has the same needs and wants as everyone else. Many of us do want to have relationships and friendships. We do want to have children and a good sex life
• Know that autism is part of the person – just like your gender or your sexuality
• Don’t presume that if someone doesn’t speak, they haven’t got anything to say

Relationships between neurotypical people and people on the autism spectrum might need a bit more time in terms of learning to understand each other, but that doesn’t mean the person on the spectrum doesn’t feel empathy or doesn’t love that person.

In 10 or 15 years it would be nice if I could have a relationship. I’d really like that. It’d be nice to see someone every day. I’d like that continuity. I think it would make me feel more secure.

I’m really conscious that it might not be easy to find someone who wants to take on 10 disabilities though.

As well as being on the autistic spectrum, I have some brain damage, which is why I have cerebral palsy down one side. I have a visual impairment. I can’t judge distances very well.

I have lax ligaments and poor muscle tone which mean I get quite fatigued and uncomfortable physically. I also walk with a limp. I have dyslexia and dyscalculia, which is mathematical dyslexia. I have dyspraxia, which means I have a poor short-term memory.

I have scarred lung tissue and prosopagnosia (face blindness). I don’t remember what my parents look like – the positive is, though, they never age! I know my dad has a beard and my mum has long hair and they both wear glasses. I don’t recognise myself either. I wear my hat and my glasses because if I see a photo of myself, I know who it is.

I have had relationships in the past. What stunted my relationship experience was that I was raped when I was 20 by someone who I knew, and who was a lot older than me.

That’s why I wrote the book, really. I found that this is something that happens to a lot of women, but that women on the spectrum are particularly vulnerable.

“I didn’t feel very happy or safe in school. I didn’t have much of a concept of who I was. I was very different and it was very difficult to be a different person.”

The book is aimed at 14+ year olds to 25-ish to give them information about the questions they may be asking or the situations they might find themselves in. Autistic girls and young women will potentially want to do the same things as neurotypical women and it’s very important they have information so they can keep themselves safe. Parents and educators often feel very awkward talking about this, but if you don’t have enough information to say ‘yes’, you also don’t have enough information to say ‘no’.

Of course it’s awful that it happened to me, but at least I was able to do something that might help people in the future.

Workwise, I love what I do. I feel really privileged to have all this knowledge about autism and lucky to be learning more all the time and educating people to try and make things easier for people.

I would like to do more radio broadcasting. I have a little community radio show about people on the spectrum, but I’d like to do more, and not just about autism and disability.

I’m good at interviewing people and it would be nice for people to see someone on the spectrum doing something well which is nothing to do with autism.

For me, part of being a human being is trying to help other human beings, so mainly I just want to keep doing that.

For more information on the work of the National Autistic Society, visit www.autism.org.uk.

For more information on Robyn and her work, visit www.robynsteward.com.

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Written by Sam Wonfor

Journalist and mother-of-two who gets lightbulb invention moments while breastfeeding. Well, she had one. Loves dogs and the thought of exercise. Currently receiving treatment for a deep addiction to Malteaster [email protected]