Published on 12, July, 2020
Hello everyone, this is my first post. I am hoping for your advice and opinions in relation to my current role.
For background I am a 40 something year old man, diagnosed with autism in childhood in the 1980s and re-diagnosed in my late 30s when a NHS neurodevelopmental clinic I worked for didn't believe I had the condition.
I have worked in health since my mid teens and have always supported and advocated for neurodivergent people. I have published on the subject and spoken nationally for a range of organisations including the Royal College of Nursing (RCN).
Prior to working in an ASD assesment service I always strongly advocated for assessment and identification.
However, I now feel deeply concerned at what I have discovered through becoming more familiar with the assessment process, particularly in the private and independent sector.
I have been completing ADIRs. This is one half of the 'gold standard' used for ASD assessment. This is the parent interview. What I have discovered is it isn't fit for purpose and everyone who completes this assessment knows this.
First of all the language is dreadful and is about as far away from neuro affirmative as you can find. It's a test designed by neurotypicals to administer to other neurotypicals to develop a neurotypical view of an autistic person. What's worse is it doesn't assess the condition properly.
The ADIR works really hard to identify parts of the condition which are no longer in the diagnostic criteria and misses out other symptoms.
We were trained by an American and their rate of diagnosis is double our national average. We are then being trained to be even more liberal with the questions under the guise of complex and subtle and I imagine our diagnosis rate has to be higher than the Americans. Many of the referrals wouldn't get into the NHS clinics I previously worked in and as people are developing their own questions I often hear things which are not ASD being framed as ASD.
The result of all this is I believe we are having children and young people diagnosed with ASD who probably wouldn't receive this diagnosis within more robust services. There is a gravy train of private services each charging more than 2k a time per diagnosis and it appears there is an incentive to give the diagnosis. Not financial, but in terms of being a business wanting positive reviews and to follow the request of their customers. What is the long term effects of this?
There must be a better way of doing this? I don't know the answer but think neuroimaging has a role. A computer scientist in Southampton is able to predict ASD within a 90 something percent accuracy through brain imaging whilst young people play specific computer games. Whilst I think it would be a shame to remove the story and talking and this needs to be incorporated in my opinion. It's a little way from being able to be implemented widely but the idea is a cap, piece of software and laptop will be all that is required.
The current standpoint of policy and guidance makers to rule out anything but their outdated 'gold standards' and the domination of neurotypicals 'doing' services to people on the spectrum needs to stop in my opinion.
I think the experts by experience consulted are lip service and would like to see more people on the spectrum with clinical experience leading within the field. I don't know how we do this. I am part of the National Neurodiverse Nurses Network but we have quite a wide remit and I am not sure this is the way forward in regards to this issue.
Sorry for this massive monologue. Like many of you I see things in a.lot of detail.
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.
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
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 !