​​​​​​​​​​"Autism is a developmental disorder, and I'm still developing." - Temple Grandin

https://adultswithautism.org.uk/my-journey-with-autism/

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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 diagnosishas been life-changingin a very positive way.It hasled me on an incredible journey of self-discovery,and re-evaluation. 

Along with many otherautisticchildren in the 1960’s and early 1970’s, the doctors had labelled me withChildhood Schizophrenia.As a result, I spent my entire childhood as either an inpatient or outpatient at theGreat Ormond Street Children’sHospitalin London.This wasfollowed by six yearsat a“special”boardingschool, 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 itright.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 thanaround20% of their words.

I chose a career that allowed me to express, andcommunicatemy ideasin a way that worked for me.I followed my passion,(obsession!)for playingtheguitar 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 musicand videoforradio and TVcommercials.

Whilst all of this sounds great, the real storyhas been my underlying,life-long battlewithmental health problemsand undiagnosed autisticsymptoms.Finally,at the age of 48 in 2008, my autism was spotted by a psychologistwho consequentlyoffered 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 mesomuch about the diversity of people on the spectrum,just how different we all are, yet similar in so many ways.

My career as afilmmakerhasreallytaken off in the past couple of years.Viewing life through acameralens hasbeen an education in social skills. It hashelped me lookoutwardsinto the worldand 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 themysteriousset of symptoms that I assumed were due to only to poor mental health. These problems werea permanent, and seemingly untreatableforce, thatserved 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.
    

adultswithautism.org.uk

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https://www.youtube.com/watch?v=0wkuN4JIqvE
https://adultswithautism.org.uk/wp-admin/post.php?post=1011&action=edit

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Autism: A world of extremes
Autism: diagnosis and after
The big secret
Autism: Is poor mental health the bigger problem?
Autism and self help
Telling people you have autism
Autism, successful communication,10 things to make it easier

Comments

  1. abbysays

    Any recommendations for a clinical psychologist? My (adult) son has autism and it’s also become obvious that OCD is also a factor.
    Many thanks for any help
    Ab

    Reply

  2. Angiesays

    Hi guys, i have always had this irrational empathy for inanimate objects. I can’t remember a time when i didn’t feel sorry for toys on their own or washing on a line if they are the only item i will go and bring in that single piece of washing.
    Am i going mad ?

    Reply

  3. Actually Autistic Blogs Listsays

    Your blog is currently included on our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please personalize your blog’s description by selecting “About the list/How do you want your blog listed?” from the top menu on that site.
    Thank you.
    Judy (An Autism Observer)

    Reply

  4. JCsays

    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.

    Reply

    • Terrysays

      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

      Reply

  6. Philsays

    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

    Reply

    • Steve- adults with autismsays

      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

      Reply

  8. yasminsays

    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….

    Reply

    • Stevesays

      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

      Reply

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