How I started in autism

When I was 17 I was in a Further Education college. Danusia (the tutor who ran the Autism social group) invited me along to the many conferences the college was invited to speak at, about their work supporting Autistic students. Danusia also set up the first training sessions I ever did and told me after one session “You’re really good at this, this could be the start of your career.”

When I was at another further education college studying art and design, I tried getting a part time job. I worked in a computer shop, however this didn’t bode well with my physical disabilities or my mental health, so I decided to contact a few schools and colleges to see if I could deliver some Autism training.

In around 2005 there weren’t as many autistic people easily accessible for speaking and training, YouTube was in it’s infancy, so having an actually autistic person come and deliver training on autism was quite a novelty. As such, people started sharing my contact details with other schools, I remember one day I hadn’t exited the playground of the school I had been training in when I got a call from their junior school asking for me to deliver some training for them too.

Also bear in mind that Asperger’s (autism with a average or above average IQ and no language delay i.e. learning to speak at the same age as your peers) had only become an officially diagnosis 11 years earlier in 1994. If it were a person, it would be just starting British high school!


My reputation continued to grow, I moved on to University (although I only stayed a year) and volunteered to mentor a child on the Autism Spectrum in a Special School. I really enjoyed mentoring and learning more about autism.

It had frustrated me at school that the SENCO (Special Educational Needs Co-ordinator) assumed all autistic people were the same, and I wanted to understand more about different people, as I could see this would make me a better mentor and give kids a better time in school then I had had. I started to attend events to further my learning, and people started to ask me to mentor their children. They also were forthright in offering me payment which made me think about the skills I had built up in a different way.

How I started doing TV and radio

In May 2008 I was asked by the National Autistic Society to do a live on air interview with BBC News 24. This felt very exciting and I was good at it. The next week I was invited to speak on Channel 4 News.

Channel 4 News were doing a feature on Autism because “IMFAR” (International Meeting For Autism Research) was in London that week, and presenting at it was Dr Liz Laugeson from UCLA (University California Los Angeles). She was presenting a piece of research she had done on a social skills training programme she had been involved with adapting for adolescents on the autism spectrum. The programme was called PEERS and used ‘ecologically valid’ tools (meaning that they work in the real world) to help autistic young people make friends and not get bullied, and Channel 4 wanted to cover it.

How I first started travelling the world

The Head of Support at my university e-mailed me to ask if I had any urge to travel and he encouraged me to apply for the Charlie Bayne Travel Trust. In light of having just been talking about Los Angeles, I decided to apply to go there. I was invited to go to an interview which was held at Cambridge University. I didn’t think I would get it, but I was given part of their funding that year. I called Liz and explained who I was, she had seen me on the news and remembered me. She said I could come and give a talk, and she gave me a wonderfully intense programme of things to do and see autism related mostly, at UCLA.

This was an eye opening experience and many people came to hear me speak. Because of the LA trip, I decided to take a sabbatical from university, despite getting good grades. I was concerned about the debt I would of accrued over my time at university and thought that autism could be a good career choice.

I continued to travel around the world to speak at conferences and see how people thought about autism in other places.

How I built skills as a mentor

I moved to London and wanted to further my mentoring practice, so attended an ‘Introduction to counselling’ course at the City Lit (an adult education college in London). I enjoyed the course very much, and liked learning practical skills. I also liked knowing I was doing something meaningful that had a positive impact on people.

How I started playing the guitar

I began playing the guitar and writing my own songs like ‘Hexigazmel Sandwiches’ and ‘Space Cadet”. I continued to grow my network of people I knew, and learn as much as I could about autism by attending conferences as a delegate or when I was speaking spending the day at the conference I was speaking at.

In 2008 I was also invited to speak at the House of Commons at the launch of the then Autism Bill (now the Autism Act 2009). I continued to be actively involved with the National Autistic Societies policy work.

How I travelled the world some more

In 2010 after meeting at a conference, Dr Wenn Lawson kindly invited me on tour with him in Australia. It was amazing to be the other side of the world, see real live Kangaroos and Tasmanian Devils, to meet new people and see autism from the eyes of a different culture. We also had dinner with Dr Tony Attwood one evening.

How I got involved with research

At a conference. I heard a psychiatrist discussing ‘Stimming’ this is commonly described by professionals as ‘repetitive routine behaviours ‘ but in the real world it means a repetitive movement like hand flapping or rocking. He asked rhetorically ( But I answered anyway) “ when have you ever met a autistic person who likes to flap” and then he said people only enjoyed doing it because they had been told not to do it ( this is the opposite logic for most autistic people who hate breaking rules) .
The fact that there were no autistic people speaking at the conference and so people would only be getting the non autistic perspective on stimming worried me and I didn’t agree with the psychiatrist. I went back to my hotel that night wondering what I could do about it, I decided to do a survey about stimming and ask autistic people about their perspectives. Overnight I got 100 responses and when I gave my talk aU talk at UCLA I presented my results. The results were that 50% of people enjoyed stimming and 30% enjoyed it sometimes but 72% of people had been told not to stim. The top 3 of the many reasons people Stimmed were to “calm down” , “reduce anxiety” and deal with overstimulated senses, from the 100 people I compiled a list of 102 unique kinds of stims.

Around this time through my work with the NAS I was invited to be a consultant on the National Theatre’s version of “the curious incident of the dog in the night time” despite Mark Haddon not using the word Asperger’s the blurb on the book and peoples perceptions are that the lead character Christopher is autistic . I was also interviewed for the BBC Documentary “ My Curious documentary” about the production.

In 2012 I was co-chair of the National Autistic Societies professionals conference. I went up to the Jessica Kingsley publishers table, and introduced myself as one of the Co Chairs ( of the two leg variety) and asked them if they would be interested in having me write a book for them.

How I got a book deal

A few weeks later I met with my now editor, Lisa Clark to discuss ideas for a book I could write, and we came up with the theme of safety for autistic women, as this fitted in well with my own personal experience but also with the skills I had been building as a mentor and my knowledge of Autism.

It seemed obvious and important to me to learn from other Autistic women, but also to try and understand if there were specific safety related issues that were more prominent in Autistic women’s lives. I wrote a survey based on the topics Lisa and I had shortlisted and compared the results from 100 Autistic and 100 Non Autistic women. Some of the issues which were raised by people who filled out my survey were things that I had dealt with as a mentor or myself, so I had a good starting point for building strategies. The issues raised that I had not much knowledge of I found out about by building up a group of professionals and autistic people whom I discussed these issues with and I then went away and developed some strategies. As much as was possible I tried the strategies out and made sure they worked, not just for me but for other autistic people too.

The research for the book took a lot of time,

How I became a Research Associate at University College London (UCL)

I was giving talks and sharing my ‘stimming’ story. One day an audience member Dr Liz Pellicano (then director of the Centre for Research in Autism and Education at University College London) told me to stop saying my research was not proper research. (I said this because I’m not an academic) and she said she would like me to work with her at CRAE. As such, I was invited to become an Honorary Research Associate. This gave me access to an ethics board to check through my surveys and people with greater research experience then me who could help me make sure my surveys were not written in a way that would bias results.

As part of my work with CRAE we applied for me to give a poster presentation at “IMFAR” (International Meeting For Autism Research) that year which was in Salt Lake City, Utah, USA.

I was delighted when I was accepted. IMFAR for the most part had a very medical model view of Autism which I found deeply depressing.
At this time, I was feeling a bit depressed in part because there was such a contrast between what Autistic people and those who support them wanted from research and what research was being highlighted. (One year at IMFAR the keynote presentation was about potential causes of Autism) but I feel we should focus on how can we support people to have the best lives possible.

To cheer me up, I used to take my guitar with me to talks and things and fit songs into the presentation (for my own benefit as much as the delegates), this however did work well although I’m very limited on what I can do on the guitar. The songs I wrote like ‘Hexigazmel Sandwiches’ were very popular especially amongst the kids, who many years later would still remembered the songs, (as did the staff).

In 2013 my first book ‘The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum’ was published and I did a self-organised 5 1/2 week UK tour. The tour, whilst exhausting, meant the book became a NHS prescription in Dorset. I got a bit of press attention including being on BBC Radio 4’s Today program.

How I became a jazz musician

Having seen Mark Walker (Caravan) playing in a JJ Cale tribute band I became enthused by music again.
I decided to give the cornet a go again. (I had played the cornet which is a small version of the trumpet between the ages of 8 and15). I joined Morley College’s big band programme lead by Tony Douglas MBE and learnt to use my ears to learn scales. This opened a door in music for me. I got myself a trumpet and over New Year 2014/15 I attended a workshop and learnt to improvise.

I continued my work with CRAE and presenting around the world, I appeared in many media forms regularly including for awhile being a regular guest on BBC Radio Cambridgeshire. BBC Radio 4 made a documentary about me after I had an e-mail a Producer from a programme I had been on.

In 2015 I was joint awardee of the NAS Professional Award for Outstanding Achievement by an Individual on the Autism Spectrum for my work highlighting sexual abuse against Autistic people. That is something I had personal experience of, and had been one of the reasons safety came out as a good topic because I had misunderstood what sexual abuse could look like.

Why I started taking music more seriously

In 2016 David Bowie died. This caused me a great deal of sadness that I wasn’t at all expecting. At the same time as this I saw Andy Diagram (90’s James’s trumpet player) in his duo Spaceheads. This made me think about the trumpet in a whole new way as Andy Puts his trumpet through effects. I think also knowing I was going to turn 30 and despite all this success I felt a little unfulfilled. I decided to focus on music. I started to experiment at first with software emulations of guitar pedals and sent what I’d made to Andy. He loved it and said he wanted to mix it, so he did. It became my ‘New York EP’.
Around this time I was also invited by my friend Ben Connors, who I had met during my work with the NAS, to be part of his project aiming to improve inclusion for children with SEND (Special Educational Needs and Disability) at Tate Britain, working with the charity Day Trippers. This project ran for about 2 years and I made a podcast, wrote 2 songs and was a roaming musician.

How I got my first gig at the Southbank Centre

I E-mailed Heart N Soul (www.heartnsoul.co.uk) who put on a night every year at the Southbank Centre and told them about the music I was making and asked if I could perform. I wasn’t expecting them to say yes but they did! So I got a band of 5 trumpets and a keyboard together and we did a gig. We were called Robyn Steward and the Hatonauts (like astronauts but with hats). We decided to stay together and gigged all over London and even did a gig in Brighton (where everyone thought we were rubbish - worded more strongly) till the last song and then they demanded a encore of the last song).

My book was translated into Russian and I got to attend a conference to see it launched.

Heart N Soul asked me to join their artist development programme and continue to support me. This has opened doors to speaking at SXSW on neurodiversity in music, getting a radio mic and many other things (I have a whole page dedicated to my time with Heart N Soul so far).

How I started writing about periods

I decided in 2017 I ought to write another book. Initially I had wanted to write something about the wider gender spectrum amongst Autistic people. In the end it was decided that the topic should be periods.

I produced a survey about periods. I wasn’t especially enthralled by the topic of periods, but then I went to the SMCR (Society for Menstrual Cycle Research) conference in June 2017 and it changed the way I thought about periods. I loved the people that I met and became especially intrigued by reusable menstrual products (just as well I’m Autistic and like small details and facts). I also bought most of the popular books on period education and found 3 things:

1. They were not very literal

2. They weren’t that detailed

3. There weren’t any photos

I set about designing a period book that would fill in the gaps.

I developed a frame of paper flaps and a grid template so that readers could put the frame over the grid, and then lift the flaps if they wanted to see the pictures (or not). I commissioned an over my shoulder angled photoshoot for step by step guides for using period related products. I also visited schools, services and a hospital, to talk to other Autistic people and professionals. One NHS Gynaecology Clinic’s diagrams were wrong (they told me) and from talking to adults I could see that a lot of people who either had the wrong information or just a lack of it.

I also started doing a lot more music workshops and generally incorporating music into my professional practice, I like the immediacy of the difference it could make to people.

How I started working in the hub at the Wellcome

In October 2018 Heart N Soul moved into the hub at the Wellcome Collection for a 2 year project for which I am part, looking at wellbeing but with people with learning disabilities and Autistic people asking the questions. In the first 3 months we put on 2 big events and an installation, and there will be lots more to come. Things have changed because of COVID 19 but we are still doing great things.

How I started getting arts funding

I decided that I wanted to put my own gigs on and demonstrate inclusive practice, which would mean people with and without disabilities could come together and have fun.

Note

Lastly I must say that my parents set me up in good stead by teaching me about being flexible, the world not revolving around me, other people have feelings different to my own and life is not fair. I, like many other Autistic people, learnt a lot of my social skills by copying other people or choosing to learn from them and adapt. Almost taking a analytical approach to social skills. My parents also brought me up to have a positive attitude and address problems as they arose rather then thinking too far ahead, but all of these skills were learnt. I have had times in my life where I have been trying to be successful at something I’m just not cut out to do. The only piece of advice I can give on this is to keep trying different things with as much variety as possible until you find things you are good at and a place where people value you.