BBC In Depth: the ongoing battle to define autism

I think that the present system works fairly well. People who display certain traits and behaviours are diagnosed as autistic (ASD). Those who can live independently are just autistic, those who cannot or have more severe difficulties, are usually diagnosed with additional co-occurring conditions, such as intellectual/learning disability, being non-speaking, severely epileptic etc. etc.

In my opinion the term 'profoundly autistic' is a misnomer for people who are autistic but also have severe co-occurring conditions.

Martin said:

In my opinion the term 'profoundly autistic' is a misnomer for people who are autistic but also have severe co-occurring conditions.

Is it not the case that autism alone can be severely disabling? 

Yes, people can be highly intelligent but severely disabled by profound autism. It's a bit unfair to dismiss them. 

I was thinking of 'inside autistic minds' programme, and Ken Bruce son has profound autism, but with great difficultly had written a very thought provoking piece of writing, even though he couldn't talk and barely type.

"Through his short film on the program, Murray aimed to show that a lack of spoken speech does not mean a lack of intelligence or a desire to connect with the world."

This has just made me question something in my own family history. I had a great uncle who was in an institution his whole life and I've never known any details of why. I've always been afraid of upsetting people by asking. But now I know I have autism, I wonder if he had it too..

There are definitions in the diagnostic manuals, such as 'autism with intellectual disability'. The ICD-11 describes around 300 different presentations of Autism Spectrum Disorder (ASD). This is a recognition that autism comes in many different varieties. Are all these varieties the result of the same genetic or environmental causes? Are these varieties caused by a sliding scale of autism severity, or are they caused by overlapping co-occurring conditions?

My point is, does 'profound autism' exist as an entity in and of itself? For example, Is the causation of not being able to speak directly linked to autistic features or is it independent? A person who cannot speak, but is gregarious and happily engages with other people will not get an autism diagnosis, what then is the cause of their inability to speak? It is apparently not autism.

I had an uncle who was profoundly autistic. Unfortunately for him he was born in to a family of 11 in the 1940s so he was put in an institution and spent his entire life in institutions, half of it in a horrible Victorian place where as a child I would visit him with my mother. He did not make eye contact, had facial ticks,wrung his hands and rocked on his feet all of which were very confusing for me as a child. He loved jellies and comic books like the Beano. Visits were a case of my mother asking a few questions with yes no answers followed by watching him eat jellies and read his comics 

There was one thing I remembered that now makes me smile he would come across certain words where he would ask what is this word and he would slowly read out the letters of the word. My mother would say that is "building" or whatever the word was and he would happily carry on reading. There were a few occasions where my mother was not paying attention or maybe misheard him and would say the wrong word at which point he would make uncharacteristic eye contact and say in a condescending tone"no it doesn't, it's" whatever the word was. He knew what the words were, he was testing us 

It was an insight in to what was behind who he was inside.

I had an uncle who was profoundly autistic. Unfortunately for him he was born in to a family of 11 in the 1940s so he was put in an institution and spent his entire life in institutions, half of it in a horrible Victorian place where as a child I would visit him with my mother. He did not make eye contact, had facial ticks,wrung his hands and rocked on his feet all of which were very confusing for me as a child. He loved jellies and comic books like the Beano. Visits were a case of my mother asking a few questions with yes no answers followed by watching him eat jellies and read his comics 

There was one thing I remembered that now makes me smile he would come across certain words where he would ask what is this word and he would slowly read out the letters of the word. My mother would say that is "building" or whatever the word was and he would happily carry on reading. There were a few occasions where my mother was not paying attention or maybe misheard him and would say the wrong word at which point he would make uncharacteristic eye contact and say in a condescending tone"no it doesn't, it's" whatever the word was. He knew what the words were, he was testing us 

It was an insight in to what was behind who he was inside.

This has just made me question something in my own family history. I had a great uncle who was in an institution his whole life and I've never known any details of why. I've always been afraid of upsetting people by asking. But now I know I have autism, I wonder if he had it too..