"Autism is a developmental disorder, and I'm still developing." - Temple Grandin
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Hi I’m Steve
I am an adult on the autistic spectrum. I work professionally as a filmmaker, and specialist tutor at the National Autistic Society in London.
In 2008, I was diagnosed with High Functioning Autism, and in many ways, it felt as though my life started all over again. Receiving the diagnosis has been life-changing in a very positive way. It has led me on an incredible journey of self-discovery, and re-evaluation.
Along with many other autistic children in the 1960’s and early 1970’s, the doctors had labelled me with Childhood Schizophrenia. As a result, I spent my entire childhood as either an inpatient or outpatient at the Great Ormond Street Children’s Hospital in London. This was followed by six years at a “special” boarding school, suitable for “maladjusted and disturbed” children.
I had been practically non-verbal till the age of six, and to this day, speaking is very hard work and tiring. It takes a good deal of concentration to get it right. My communication difficulties extend to making sense of what people are saying to me. I often take things in the wrong way, and always struggle to process more than around 20% of their words.
I chose a career that allowed me to express, and communicate my ideas in a way that worked for me. I followed my passion, (obsession!) for playing the guitar and writing songs. I had a relatively successful career as a musician, songwriter and record producer for over twenty years. During the 2000’s, I became involved in the advertising industry, creating music and video for radio and TV commercials.
Whilst all of this sounds great, the real story has been my underlying, life-long battle with mental health problems and undiagnosed autistic symptoms. Finally, at the age of 48 in 2008, my autism was spotted by a psychologist who consequently offered to perform a diagnosis.
Post diagnosis, I quickly found that the only help for people like me was self-help. The only support and advice available, was that shared on forums, by other autistic people. There were no services available for adults on the autistic spectrum. I also found that in 2008, the majority of useful online information on autism, was aimed at parents with autistic children.
I decided that there should be an online resource designed specifically for adults on the autistic spectrum, I set up my YouTube channel: adultswithautism followed shortly afterwards by this website; adultswithautism.org.uk. This has connected me hundreds of other autistic adults. Many of whom have a professional career, marriage and children. Yet their autism poses everyday challenges not faced by the average neurotypical.
My diagnosis has also changed my life’s expectations and goals. I am now a much “happier” person, (Well, most of the time!) I have new passions in life that are far away from my old life in the unforgiving, ego driven, self-serving world of the music industry. My work at the National Autistic Society, has taught me so much about the diversity of people on the spectrum, just how different we all are, yet similar in so many ways.
My career as a filmmaker has really taken off in the past couple of years. Viewing life through a camera lens has been an education in social skills. It has helped me look outwards into the world and observe the way people interact. My other passion in life is writing.
I am presently working on my first book. This is a retrospective look at life as both an undiagnosed autistic, and later as a diagnosed member of the growing autism community.
In many ways, I wish I had been diagnosed when I was much younger. For most of my life, I have not understood the mysterious set of symptoms that I assumed were due to only to poor mental health. These problems were a permanent, and seemingly untreatable force, that served only to sabotage my relationships, career and self esteem.
I suppose that having a diagnosis at 48, is better late than never. But I often wonder how much I could have achieved in life, if I’d known then, what I know now, about myself.
I echo the words of the great Temple Grandin, “Autism is a developmental disorder, and I'm still developing.”
With Ms Grandin’s insightful words ringing in my ears, I attempt to scale new heights of self-discovery, improved relationships, career success and contentment.
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JC says
Hi Steve,
Thank you so much for sharing your life with us. I appreciate all you are doing.
I loved the movie “The Accountant” with Ben Affleck about autism and have since discovered that he is also autistic. Although the movie received a lot of (unfair) criticism, I thoroughly enjoyed it.
I am 73 and just discovered Asperger’s/ASD and why I could not fit in socially all these years. Discovering also that my 76 year old husband whom I have shared my life with for 36 years, also exhibits Asperger’s Syndrome. Maybe that is what has kept us together so long is that we both detest social events and put no pressure on ourselves to attend them except if absolutely necessary and for only a short while.
Bertie says
And, even deeper than that, try to understand why we love sports
– warts and all.
Terry says
Hi Steve,
First of all I want to thank you for your youtube videos which I, and many others, have benefitted greatly from. Like you I have been diagnosed with HFA/Asperger’s late in life. I was diagnosed only a few months ago at the age of fifty. Since then I have experienced the emotional rollercoaster that I have heard others describe: initially it was relief at having an explanation for why i felt so different to other people; then came the anger at the length of time getting to a diagnosis took; then a sense of grief took over, for the life I could have had if i had been diagnosed earlier, and lately; frustration as I try to find a place in the world and come to terms with things i have avoided dealing with for my entire life.
As you have mentioned in your videos, after the long and exhausting diagnostic journey you are left alone to struggle with the huge task of assimilating a new identity and finding a more skilfull way of being in the world. My situation is complicated by the fact that both my children have autism and are experiencing severe depression at the minute and I am also the full time carer for my disabled wife, who is neurotypical. Consequently, I am unable to work and have little free time. I used to volunteer with the CAB but I had to stop because of the stress caused by my caring commitments. Despite this, and because of my own experience of the lack of suitable support for adults on the spectrum, I want desperately to make a difference for our population.
I have considered various ways of doing this, such as starting a support group, writing a blog or a book etc, but my caring commitments leave me little time to myself, plus i am extremely slow at writing and taking in information, mainly due to obsession I have to admit. When I saw your videos, and videos others on the spectrum have posted I thought that, finally, here is a way i could contribute; at my own pace and in my own home. Then I hit the biggest barrier, the one i have avoided dealing with since i received my diagnosis, coming out. In order to contribute publicly, obviously I would have to reveal myself as someone with Asperger’s and so far, I have only disclosed to my wife and children.
So, I would like to ask you if i may, how did you cope with the disclosure process and when did you feel confident enough to place yourself in the public eye fully as an individual on the Autistic Spectrum? Also, what advice would you give someone on starting a youtube channel and the videoing process as i have no experience of either of these things?
Thanks.
Terry
Phil says
All my life (nearly 60 years) I have struggled with some unnamed demon. Depression/anxiety was never far away, most relationships a complete disaster, alcohol abuse was the norm, the list goes on and on. Most of this time I did manage to hold down a reasonably successful career in IT. During this time I have tried no end of conventional (and not so conventional) methods of self help, both medical and non medical, none of them really having any real answers to my problems. I had pretty much resigned myself to a life of eccentric loneliness and come to the conclusion that I was just vaguely mad.
A few months ago, my one good friend related to me a conversation he had with a colleague concerning my IT skills. Long story short, this colleague asked “how autistic is this bloke?” My friend, who is an intelligent man told me this story in humour as he didn’t think it to be true.
I knew little about autism other than the really severe stuff as presented by Dustin Hoffman in the film Rainman, and I knew I wasn’t in that bracket. To honest and frank, I believed things such as ASD, were just made up complaints to label kids with bad parents or poor education system, not really having any validity in the “real world”. However, I thought it would do no harm just to read a bit as my interest was piqued.
From the very start I could have been reading a manual that defined the very essence of my life. It was that moment of discovery. that Eureka!, something that I could identify in myself that so closely matched what I was reading. Although I don’t like labels, it felt so good to have this description, a name for what appeared to be the source of my ills.
I took an online ASD test and scored highly, so the next question was, “what do I do next?” I recognised that there is no “cure”, but that help might be available. I have little faith or trust in the medical profession, and I live in an isolated part of the UK, I didn’t expect much. At that time I did have substantial income, and via a number of websites, managed to find a private councillor who specialises in Asperger’s Syndrome who lives very close to me. I know from bitter experience that there are plenty of people who advertise as “councillors” who are no more than charlatans, but this lady had letters after her name, and was on a recommended list from the National Autism Society. So, I thought, what the hell! Lets try.
I could not have found a better person to help anywhere. She has listened to me, advised, helped and assisted in more ways than I can count. Although she is not qualified to diagnose, she is convinced, as am I, that I have Asperger’s Syndrome. The 6-7 months I have been using her service has been nothing less than a revelation. Much has changed in that time which I won’t go into now, but I feel that I am becoming a better person.
I have accepted my condition, and although I have much more to learn I’m sure, I do feel that my life has taken a turn for the better, I’m starting to understand ‘me’.
Thank you for taking the time to write your site. I will be following in future.
Phil
Steve- adults with autism says
Hi Phil
Thank you so much for telling your story. I totally relate to your description of an “unknown demon”. This always seems present even when the mental health side of things was ok.
I think your story can help a lot of other people. I would love to use it as my next blog post. Would this be ok with you?
Regards
Steve adultswithautism.org.uk
salud says
I am truly glad to read this blog polsts which consists of
ots of aluable data, thanks for providing these kinds of data.
Steve- adults with autism says
Hi Salud
Thanks for your message. I hope you find some interesting articles on my website.
Best wishes
Steve http://www.adultswithautism.org.uk
yasmin says
l want to thank you for your nice videos , you are inspiring person….
first: l feel bad about being different without explanation not because of (defference) but l have many health issues….then l discover the truth and lam very happy now……
l appreciate the valuable information in this blog……
thank you….
Steve says
Hi Yasmin
Thank you for your message. It’s great to hear from you. I am really glad that you feel happier now that you understand some of your problems. It was the same for me.
I look forward to talking with you again
Best wishes
Steve