BBC In Depth: the ongoing battle to define autism

I'm so sorry you had that experience of dealing with a dismissive doctor as a direct result of Frith's comments about late diagnosis. It's really impressive that you managed to keep composed to dispute it, that would have broken me! 

Did you manage to get the right to choose? I hope you can eventually manage to get seen.

I went to the doctor the other day to go down the right to choose route for an autism diagnosis. After having waited two years I got a letter saying that I would have to wait another two years. So I did some research and found somewhere through right to choose that seems to have a much shorter waiting time. I had to go back to my doctor with a letter and a questionnaire that I had printed out for him to sign and send off. The doctor was very dismissive and asked me what I was hoping to get out of it. He then said I should read uta frith as she was the authority on autism. He actually refereed to her as “ the grandfather of autism” which I thought was particularly odd. Knowing something of her and her recent comments in the media I felt this as a bit of an attack. I was able to maintain my composure and say that as far as I was aware her ideas on autism were quite dated and thinking on autism has significantly changed in the last couple of decades. But I was quite rattled by the experience for some time after.

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.

These stereotypes are so easily sown. I always dismissed the possibility that I could be in anyway autistic because I had heard at some point that people with autism did not understand humour and could not feel empathy. I am embarrassed now that I didn't question that but that's how these things start. Some "expert" making a comment like that and anybody who doesn't know any better stores that as fact 

I used to run communication teams and had a reputation as a gifted communicator. What wasn't evident to those kind enough to say that was the huge investment of energy (spoons) necessary for an autistic person like me to achieve and maintain that in my field. All the masking, self-editing, frustration, rehearsing, performance anxiety, replaying, ruminating, self-doubt, etc. Uta Frith's comments about Chris Packham made me very cross on his behalf as I sense he has to work really hard, and he is in the public eye as a broadcaster and writer.

There is an "ongoing battle to define autism" but nobody ever tries to define neurotypicalism, or Sub categorize it into different levels of needs.

There are supposedly billions of neurotypical people living on this planet (if the statistics are correct that autistic people are no more than 2% of humans) and that neurotypical population includes people with learning disabilities, mental health issues, plus other conditions that mean they may need support. 

So why shouldn't the autistic population also have a wide range of differing needs?

There are quite a lot of traits that differ between NT and ASC people without bringing learning disabilities or other conditions into it.

"Social engagement for neurotypical individuals is often driven by an intuitive, subconscious understanding of unspoken rules and emotional states... In contrast, autistic individuals often approach social interaction through a learned, analytical, and rule-based lens."

"Social motivation also presents a divergence, as neurotypical individuals tend to seek broad, generalized connection with peers. Autistic individuals, however, frequently prefer deep, shared interest-based connection, where the social interaction is secondary to the mutual passion for a topic."

 "The neurotypical brain possesses efficient “sensory gating,” a neurological process that automatically filters out redundant or irrelevant sensory input... The autistic nervous system frequently processes sensory input differently, often with reduced or atypical sensory gating, meaning the brain is flooded with unfiltered information."

 "Neurotypical cognition tends toward “central coherence,” prioritizing the synthesis of information to quickly grasp the “big picture” or overall gist of a situation.,.. In contrast, autistic cognition frequently leans toward a detail-focused processing style, often referred to as a strength in “local processing.” This systematic approach allows for exceptional attention to minute details, patterns, and inconsistencies that others overlook"

The above quotes are from an article titled "Autism vs. Neurotypical: key differences explained"

Here is a link to the full article:

https://scienceinsights.org/autism-vs-neurotypical-key-differences-explained/

I watched a couple of her interviews online. I think she has been fairly consistent.

The point she is getting at is that the term is now too broad. Others have suggested the same. Having one bucket for everything seems unhelpful. It is why Asperger's was separate.

I am not sure she is saying people don't have struggles or may not need help, but that it is not the same as the people with higher support needs. I think she wants the term to be reserved for those with the highest needs.

How to classify things in a way that is helpful is always a challenge. External observations don't show the full internal world.

Knowing what you have, i.e. a diagnosis, is a starting point to explore and understand yourself, so things make more sense and you can achieve more. I don't mind what it is called or what I have.

Thanks everyone.

I've had an unusually social day today so am typically exhausted, but have been reading all of your responses to this very important subject.

That really is disgusting. Uta nonsense!

Sorry, I meant Times interview! 

no worries Shardovan , thanks

Wordsmith said:

But then she said in that Telegraph interview that it was absurd to call Chris Packham autistic because he could communicate so well!

That's appalling. 

Being undiagnosed or re-diagnosed would for me like being excluded from the only tribe where I've ever felt comfortable. Do I send the rest of my life trudging through life trying to find yet another identity.

...and sorry for initially misspelling your user-name ... now remedied! 

But then she said in that Telegraph interview that it was absurd to call Chris Packham autistic because he could communicate so well! In my view, publicly questioning someone’s diagnosis is also ‘a terrible thing’.

Yes. For many who are late diagnosed there was a lack of understanding as to what autism was. I believe it is only with increasing knowledge via the internet and getting to a stage where they were no longer able to 'cope' that late diagnosed people look for a diagnosis. It is only then, that explanations for things they experienced and tried to manage become clear. It is only in recent years for example that I have become aware that many people do not experience the sensitivities I have always struggled with. 

I believe for late diagnosed adults, needs have increased by then and sometimes by then, support that they had relied upon in earlier years is no longer there. 

I agree that support is needed for those with high needs, but for others who struggle with living a 'normal' life, it is much harder to ask for or explain the need for support and understanding. It is interesting in this time when we are expected to understand everyone's differences, that it appears that some are dismissed.

Indeed, old rehashed news and Frith has received legitimate and persisting criticism over her comments earlier in the year, even from former colleagues. As you were, lovely folks...

Thank you B for posting this.

ArchaeC said:

The last thing I read was that there are potentially at least five types of autism, based on genetic differences.

Thanks for that.

Thanks, Phased... likewise :-)