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 was diagnosed with ASD online just after Covid in 2021 at age 51 via the NHS (I’m not quite sure if this was using a private company) but my family in Ireland had been pushing me to get a diagnosis since 2019 - reading through this post, given the online nature of my own diagnosis, even though I’m no expert, I’m beginning to doubt the accuracy of my diagnosis, aside from the true motivations of family back home for me to get a diagnosis later in life, especially since all the support services are mainly geared towards children - I wonder too if, even aside from private sector involvement, it has somehow become “fashionable” to be diagnosed, both as children and adults, without more robust safeguards in place as you describe?
If, like me, anyone feels a profound and life changing sense of relief, sense of self-identification and validation when receiving an autism diagnosis, I feel they are almost certainly autistic.
This thread had actually made me anxious about my own diagnosis being valid so thank you for this post.
It has reassured me.
That is exactly how I felt too.
I try and remind myself that actual imposters do not feel imposter syndrome. So in feeling this it's highly unlikely we are imposters.
I had an assessment because I needed an answer one way or another. Also because I needed to know in order to inform how I addressed my mental health. I felt no one would believe me, and in accessing MH treatment I don't think I would have been taken seriously about being autistic had I not got an official diagnosis. I did lots of research before I made a decision which provider to use. I felt confident their assessment was robust enough and the assessors were experienced enough that I would get a "fair hearing".
I'm glad you feel happy about it.
...And, some of us true imposters are still not wholly convinced that a "formal" diagnosis is going to change anything, one way or the other. I'm not sure it would help nor hinder me. There is no practical advantage so far as I can understand and I do not believe it would affect me one way nor the other. I would expect a diagnosis to go in whichever direction I found myself behaving under those circumstances, as I found them !? I certainly would not be cross if I was deemed to be something "other" than autistic - if I were a diagnostician trying to assess me (without access to my own thoughts) then I would be unlikely to know, (with any degree of certainty) what the living hell I am.
Thankfully, I know that autism is the only diagnosis that fits, at all times, over my living memory - and I am still amazed at how often yet another piece of my history slots into place.
So happy !
Yes because if you don't inherently feel different to others you are not likely to start wondering if you could be autistic. Then reading into it all then going for an assessment. Parting with lots of money or waiting years on nhs. There's a lot of stigma still atttached which people would rather avoid.
I cannot believe that many adults put themselves through the distress of going through the assessment process, and digging over difficulties, past trauma and perceived failures is distressing, for trivial reasons. People go through assessment because they are driven to by a desperate need to make sense of their lives.