Over diagnosis of autism in children and young people?

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.

Parents

  • 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

  • and I'm also blind

    your blind? but you can see the text on the forum right?

  • I access the forum either through my phone (which reads what's on the screen) or via a braille display connected to my phone (which displays what's on the screen in braille so I can read it with my fingers) 

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  • I access the forum either through my phone (which reads what's on the screen) or via a braille display connected to my phone (which displays what's on the screen in braille so I can read it with my fingers) 

Children