Subclinical autism as an overlooked part of the spectrum?

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I am an ambassador for the National Autistic Society and two weeks ago I was speaking in the Houses of Parliament about the experience of living in the "In-between" world. By "In-between" I am talking
about being too autistic for the Non autistic world and too adaptive for the mainstream autistic community.

I have copy and pasted the complete talk I offered for those who might be interested.

Wishing you all well.



I was diagnosed with high functioning autism in the summer of 2007 at the age of forty two. Two years later I had the good fortune to have an autobiographical account of my life published. The title of the book was called A Painful Gift. I mention this now because the words, pain and gift convey so well my experience of living with high functioning autism.

At the age of fifteen and after years of being told I was odd, peculiar or disturbed, I was eventually hospitalized for eighteen months with severe anxiety and depression. At the time little was known about high functioning autism, consequently my time in hospital was deeply traumatic.

I had received numerous diagnosis over the years, which included tourettes syndrome, obsessional compulsive disorder, dyslexia, depression & anxiety.

Whilst it is true I have these conditions, it was of enormous importance that these very conditions were seen in the context of autism itself, as then and only then could the appropriate support and therapies be drawn up and applied effectively.

Autism remained an enigma to myself and those in my care for two very simple reasons.

Firstly, the extent to which I was daily humiliated and taken advantage of as a child, became the extent to which I would unconsciously construct a facade to insulate me from the world that I felt constantly lost and overwhelmed in.
I became so convincing in acting normal that my autism remained hidden to myself and the world.

Secondly, GP's, psychiatrists, even specialists in the field of autism itself, still have enormous difficulty is seeing how truly diverse and wide the autistic spectrum really is. Amungst us there are philosophers as well as mathematicians. Artists as well as engineers. Dancers, musicians, poets & dreamers. We can love and we can cry. We might communicate in a way that's different from the average person, but that's a difference and not an inability.

The facts are kind and the denial of the facts can be very unkind indeed. I would not be alive today if I had not received the diagnosis of high functioning autism. I would have taken my life. The cloud of unknowing became so lonely.

Being diagnosed with high functioning autism did not belittle or diminish my humanity, on the contrary it gave me my humanity back.

The experience of diagnosis in this context has not so much been an end point, but a doorway into another existence free from confusion of unknowing and the false belief and shame of feeling wrong.

The philosopher Pierre Teilhard de Chardin said, "We are not human beings having a spiritual experience, but spiritual beings having a human experience. Today I can say that "I am a spiritual being having a human experience of which autism is an integral part." Knowing this is enables me to be free.

Firstly, the extent to which I was daily humiliated and taken advantage of as a child, became the extent to which I would unconsciously construct a facade to insulate me from the world that I felt constantly lost and overwhelmed in.
I became so convincing in acting normal that my autism remained hidden to myself and the world.

Secondly, GP's, psychiatrists, even specialists in the field of autism itself, still have enormous difficulty is seeing how truly diverse and wide the autistic spectrum really is.

BAP label gets you nothing but frustration. It is not on the DSM 5 or the ICD. It is a convenient way for people to say you are not autistic without saying you are not autistic and your problems are your fault. It is a convenient label for clinicians who do not believe that anybody who is married, has a job etc should be labeled autistic but who does not want to be or perceived as cruel.

With that said most of us do not want the “everybody is a little autistic” idea to go any further. No matter how strict or inclusive your definition of autism is there are going to be people on the “borderline” and for those people it is going to be exceedingly frustrating.

BAP label gets you nothing but frustration. It is not on the DSM 5 or the ICD. It is a convenient way for people to say you are not autistic without saying you are not autistic and your problems are your fault. It is a convenient label for clinicians who do not believe that anybody who is married, has a job etc should be labeled autistic but who does not want to be or perceived as cruel.

With that said most of us do not want the “everybody is a little autistic” idea to go any further. No matter how strict or inclusive your definition of autism is there are going to be people on the “borderline” and for those people it is going to be exceedingly frustrating.

If all the autistic chameleons and hyperempathics get a BAP sticker, what exactly does that do for them? They are still disabled, but will not get help. My doctor told me pre-diagnosis that I shouldn't label myself autistic just because I have some traits. After diagnosis, she said that the extremely detailed diagnostic report left no doubt, but she said she really hadn't seen how severe it was. Which makes sense. I have a million coping strategies, but not unlimited energy. My doctor is cool. She's able to admit she doesn't know everything, and to change her mind once there is evidence. A lot of people can't say that.

The whole issue over coping strategies/masking, and the professional or NT definition of autism, versus how autistic people would describe their experience, is such a funny and infuriating irony, isn't it? Like many here, I've dealt with the skepticism, from professionals and peers. As part of my job I have to come up with goals for autistic people who receive support services. I write goals for things like social skills which are supposed to be realistic and attainable. But, for people like me who've had to learn that stuff the hard way, without supports, it's like you don't count. The goals should be realistic, but no one seems to believe it when they see anyone who's learned the skills.

I also get the impression that a lot of professionals don't factor in IQ or other things when it comes to autism. They only see the autism, even though many autistic people have other diagnoses. If more people looked at the whole person, I think they'd see how autistic traits can display in varied ways. For example, when I was a kid, I'd lightly bang my head on the car window when I was frustrated in traffic. I knew if I banged hard I'd hurt myself and/or damage the window and piss off my mom. So I often held in that urge, which was hard. But, I work with autistic kids who have maybe an IQ of 50 and will just destroy the window. They are easy to diagnose for obvious reasons, but for those of us who hold in the same urges, or hide our stimming, it's hard because you don't get what supports or clarity you do need, even if you may be pretty independent. Autistic people are accused of black and white thinking, but I feel the professional view of who is or isn't autistic is very black and white.