Over diagnosis of autism in children and young people?

I'm not sure how much insight I have to offer with this, but here are a few initial thoughts. 

For context, I'm in my early twenties, studied an arts subject and hope to train as a therapist. I have a formal recognition of Autism, and I'm also blind. Normally i would say I'm Autistic, but given the content of your post it seems important to phrase it that way.

I absolutely agree with you that the language of the assessment is awful - very deficits-based, pathologised, and as you say arising from a non-Autistic view of what Autism is.

I have at times wondered why neuro-imaging doesn't form part of the assessment, but as a blind person the approach you describe with computer games wouldn't be accessible for me. I'm sure there would be other ways of including this, but could this contribute to making an already-pathologised process even more clinical and intrusive? I don't know what I think about this, would be curious to hear others' thoughts.

Finally, a more general and personal point: I have experienced a not insignificant degree of imposter syndrome around my Autistic identity, and I know I'm not alone in this. How would I know if I was one of those who has been wrongly identified, as you describe?

Thanks in advance for your thoughts

Sphynx it's nice to meet you. That's some brilliant points you raise and I feel grateful to be meeting so many interesting people,.which usually is so difficult.

It's nice to hear some validation on the assessment tools.

Neuro imaging takes about 30 minutes, not the many hours it currently takes to asses for ASD so is less intrusive. It will miss 8 per cent of people. Th current tools can over include people.

Neuroimaging can be completed in a standard interview room. You can get a cap which lines up all the electrodes so doesn't need to be applied by someone qualified in neuro imaging. These caps plug into a box which can go into a standard laptop. There are tasks available for people who are blind or deaf. 

I get the imposter thing as well. My whole life is engaging with others, I like people and I am generally liked. I am clumsy as anything though socially and constantly trying to work out why I have upset people. 

However, when I tell people I am barely effected by ASD they look at the floor if they know about ASD. When my diagnosis was repeated in my late thirties they told me it was 'barn door autism' a fairly unfortunate term used widely by people who do assessments. 

It's a great question.as well. How do we know if we are wrongly diagnosed? It's a life long diagnosis which is a one off assessment (or should be). I spend a lot of time thinking I don't have ASD when deep down I know I do and learning the flaws of the assesment process has fed into this.

Sphynx it's nice to meet you. That's some brilliant points you raise and I feel grateful to be meeting so many interesting people,.which usually is so difficult.

It's nice to hear some validation on the assessment tools.

Neuro imaging takes about 30 minutes, not the many hours it currently takes to asses for ASD so is less intrusive. It will miss 8 per cent of people. Th current tools can over include people.

Neuroimaging can be completed in a standard interview room. You can get a cap which lines up all the electrodes so doesn't need to be applied by someone qualified in neuro imaging. These caps plug into a box which can go into a standard laptop. There are tasks available for people who are blind or deaf. 

I get the imposter thing as well. My whole life is engaging with others, I like people and I am generally liked. I am clumsy as anything though socially and constantly trying to work out why I have upset people. 

However, when I tell people I am barely effected by ASD they look at the floor if they know about ASD. When my diagnosis was repeated in my late thirties they told me it was 'barn door autism' a fairly unfortunate term used widely by people who do assessments. 

It's a great question.as well. How do we know if we are wrongly diagnosed? It's a life long diagnosis which is a one off assessment (or should be). I spend a lot of time thinking I don't have ASD when deep down I know I do and learning the flaws of the assesment process has fed into this.

You are definitely "my kinda people" Triker.  I was also surprised by my poor score on the eye emotion test thingy.  I'm told that I am very empathetic and also feel that this is a fair assessment of me  too - but I don't often project "normal" responses and displays that demonstrate to NT's that I "understand" how their situation is.  Sometimes, this can be a blessing for them (because I'm more original, insightful and useful to them)......but more often, I just confuse and scare people (because they can see that I "know" but find my resultant behaviour as odd, weird, callous, overly intense or inappropriately emotional.)

In terms of seeking a formal diagnosis for my autism - the same principles are likely to come into play.  Either I will inevitably obfuscate my NTness or obfuscate my autistic self.....or more likely, just confuse the hell out of myself and anyone trying to assess me.

Although this sounds pretty arrogant and self-deterministic, I think a true diagnosis for autism can only be established by prolonged and regimented self awareness and enlightenment - this can manifest either with, or without, a 3rd party assessment.

Never a dull moment !

I completely agree and I think it's a crying shame that there are so many people with so much unreached potential (not just autistic people) because there's only a limited acceptable way to do things. There would be more people in employment if environments were more suitable and flexible.  If more autistic people were in employment it would offer a more diverse way of for example, problem solving. And surely that's a good thing for employers and business? When people feel they are making a contribution I'm sure this would have a positive impact on life and society. It's not just autism this applies to but a whole myriad of "conditions", illnesses and disabilities.

NAS83686 said:

people with ASD lacking theory of mind i.e. not being able to place ourselves in others shoes

I do wonder what kind of empathy is meant, definitions seem to differ, and how does it differ from sympathy? I can imagine what it might be like for another person, but it seems obvious that is going to depend on various things. I read fiction, that describes what it is like to be someone else, i think I understand what I am reading! But do I experience what I think of as empathy in the same way as other people?

To be in another person's shoes - being rather literal minded (but understand the concept of metaphor!) it makes me think, if the shoes fit well my experience of wearing those shoes might be similar to the original wearer. But if the shoes are too big, I would be shuffling around, they would rub and might trip me; if they were too small I could not wear them at all! But in a way, this still makes a good analogy.

I would have natural, immediate, visceral empathy for someone with arthritis, as I suffer from that. I would feel for someone who had escaped from a war - that seems to me like the too big shoes, the experience would be beyond anything I have experienced, but I have read about such things and can imagine it would be horrible, and feel sympathy for the person. I don't know if this counts as empathy, I would call it that, but I wonder if we all mean the same thing by the word.

I could not feel for a person who had chosen to do something I cannot understand why they would choose that. I might sympathise with their reasons for feeling desperate, but for example getting very drunk on a regular basis. I got drunk a few times at uni and quickly found my limits so I could stop before being sick because I dislike being sick. So I can't understand why someone would choose to repeat that. Even more so I cannot nor do I want to understand why someone would deliberately be cruel and hurt someone and enjoy their pain, that is beyond me.

For context, I am 50, female, and self-diagnosed autistic and ADHD, but have been diagnosed with stress/anxiety as well as being physically disabled. I have not felt the need for a formal diagnosis as I cannot work due to the things i am already diagnosed with, so I have very few situations for which accommodations are needed, and they would probably be covered by the things I am diagnosed for, so I think it better I don't clog up an already overloaded system!

I would be interested to try your brain imaging game thing. I have done online tests for autism - the one which actually shocked me was the eye emotion test, I scored so low on that and I had no idea there was this whole thing where people can tell so much emotion just from looking at eyes! I could only get the few really basic ones. I am relatively sociable and thought i was OK at communicating, though there are things i struggle with and I think there are times when I fail without understanding why. And I have always been hypersensitive, though I know that does not prove autism on its own. I also have major problems with executive function.

It's a difficult thing to balance. On the one hand we are diagnosing a disorder according to the diagnostic manuals and impairment has to exist in order to be able to diagnose.

However, I think the way our brains work is amazing. I have met an artist who was non verbal and learning disabled who displayed work in the Tate. Then there are people like Elon Musk and Greta Thunberg having a massive impact on the world. Personally, I can retain lots of information which has seen me elevated to being considered an expert in the past. Some of the comments on here show how remarkable people are.

There are people with ASD changing the world wherever I look. Why are so few in employment? 

I think society misses out when excluding people with ASD and the good we bring to the world needs more of a stage. We as a community can do this.

NAS83686 said:

and do this in a realistic but positive manner. I spend a lot of time talking about strengths and acceptance

This is really positive to hear. Rather than it being about deficits!

We sound very similar characters. My brain feels like this.

You didn't misunderstand  I spend a lot of time providing psychoeducation regarding ASD and do this in a realistic but positive manner. I spend a lot of time talking about strengths and acceptance. The.side effect is this leaves me feeling quite positive about the way I present. Although, a quick analysis shows a lot of challenges and difficulties. 

Most of my social network is from abroad for the same reasons you mention. I think a lot of them think my ASD is what British people are like lol. 

I teach adults whose first language is not English.  So it's kind of fitting because communication with them has a purpose and any "differences" can be put down to cultural or linguistic. I think I misunderstood a bit of your information initially when you said ASD barely affects you...this is why I thought you had got yourself a good set up etc but it still sounds like it's challenging. I struggle in more unstructured social situations but no one would know this because my brain goes 500mph to compensate. 

Nice to meet you Out of Step. Absolutely, like you I get exhausted.  I am currently home based, which is a bit better.

As I work as an ASD specialist nurse I spend most of my time with neurodivergent people. I also provide peer support to other nurses on the spectrum. Nurses have a very hard time as there is an expectation on how we should be which is hard to maintain and bullying is rife. I trained to be a nurse prescriber as Psychiatrists who traditionally prescribe are allowed to be a little less fluffy. 

Agreed very taxing on the brain. What do you do our of interest?

People have said the mild statement or 'I can't tell' thing to me as well. I think all autistic people experience this. It seems to be an odd thing many people do to try to make us feel better. It goes alongside the classic 'well, we are all on the spectrum a bit aren't we' statement.

In terms of what you are describing are you aware of the double empathy idea? Basically people like Simon Baron Cohen speak about people with ASD lacking theory of mind i.e. not being able to place ourselves in others shoes. The double empathy problem points out that when you ask neurotypicals to place themselves in a person with autism shoes they are very bad at it as well,.if not worse.

I am on both sides of the fence. It sounds like you are as well. I receive help for ASD and I work as an ASD assessor.as a senior nurse specialist. From my perspective services are medical model focussed, designed by neurotypicals to do services to people with ASD and not deliver services with people with ASD. 

I have worked in other areas where people with the condition I am assessing are much more closely involved. When I worked in drug and alcohol services at the start we didn't have any kind of peer or service user input. By the end we had people working for us and volunteering who had been through the service successfully. We had the best outcomes in the country shortly.after implementing this.

I feel very done to as an autistic person and don't know how we do this but want this to change.

Does engaging with people all the time not tire you out? I'm wondering if you have many neurodivergent people in your life and that you have adapted your environment to what works best for you. I too enjoy being around people and am well liked and respected.  But it's hard work on the old brain!

Ah interesting - I assumed that by neuroimaging you meant something like an MRI scan, of which I have had many and have found them increasingly uncomfortable over the years. It's great to no I was wrong about what you had in mind and what's being explored!

It's interesting what you say about other people perceiving your autism differently from how you experience it. Maybe while we can hopefully recognise that we know our feelings and understand our own experiences best, others can view us objectively in ways we never can - and so both perspectives have weight.

I tend to have the opposite experience to you, where most people I tell about being Autistic either tell me it 'must be very mild' or that I 'don't seem very Autistic,' or suggest all my traits are probably down to blindness. A couple of Autistic people have known before I've said anything about it though, which is always very validating. As you say, we definitely need more Autistic assessors