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 never heard of someone being diagnosed with ASD if they didn’t have it. However, being diagnosed with separate or similar conditions is common practise, and this is unacceptable. Suggesting that private specialists give a diagnosis for ‘fun’ is unnecessary. Many people have benefited from a private diagnosis, when they were laughed out of their NHS assessments, because they coped, worked and gave eye contact!
I tend to agree with you, Catlover. When I asked for an assessment referral at my previous GP surgery- after 30-ish years of sensory issues and social struggles, no less- I was told that I was making my concerns up because "autism is trendy online now". I left the appointment in tears and never went back, and struggled on for another five years having meltdowns and being constantly exhausted by the demands of being a 'functional' adult before getting brave enough to try again with a private provider. I'm still too frightened to ask via the NHS even with a new GP surgery. I really don't think it's fair of people to dismiss everything except NHS diagnosis when the NHS pathway is so tricky to navigate for so many people.
Catlover, nice to meet you.
I have lived with ASD for 35 years, published on the subject and have worked in the field for many years.
I can tell you with confidence that there are people being diagnosed with ASD who wouldn't receive that diagnosis in a clinically robust setting.
I also agree that not all NHS services get it right. I make eye contact, work as a mental health nurse fulltime and did get the diagnosis in the NHS so I know there is exceptions. However, my own clinic didn't believe me showing the variation.
In terms of separate diagnosis comorbidity is the norm when it comes to neurodevelopmental disorders. I agree that it can become unacceptable when people are for instance diagnosed with depression and anxiety, prescribed antidepressants and told it's not a neurodevelopmental disorder. This does happen a lot with adults. I know tha many are helped by very good private clinicians in these circumstances.