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.
Of course, if the NHS in general and CAMHS, in particular, were properly organised and funded there would not be a market for private diagnoses. The CAMHS service has been a disaster area for decades. Recent changes in DSM have widened the definition of ASC, but like all these changes there was professional consultation and supposedly a consensus was reached. However, ASC, ADHD and other forms of neurodivergence are still controversial diagnoses in some places.
My view is that there is probably a greater awareness and recognition of what is sometimes referred to as " high functioning" ASC. That and the fact that it is now possible to diagnose comorbidities, e.g. ASC and ADHD.
When I look back at my education, in the days when we still had grammar schools, a lot of my friends were "geeky" or "weird" in some way ... I certainly was. With hindsight, I can see that many of my peers were showing signs of neurodivergence, it was just that nobody looked for it. (And the diagnostic criteria were vastly different in any case.)
I struggle with "experts by experience " - if I break my leg, does that make me an expert on orthopaedics? We need to listen to, and respect, the views of patients and service users ... but "experts" ? I think not. That said, there are probably many social workers and clinicians who are neurodivergent, and who have both professional knowledge and lived experience, and can legitimately claim some expertise. As a social work educator, I know that I can supplement my factual knowledge with my own experience ... but I also need to remember that for all of us, our experience of neurodivergence is very personal. Person-centred therapy regards the client as the expert in their own problem, and as part of the solution, and in that sense, I will go along with the expert by experience. But I am NOT an "expert" on >your< autism, or anyone else's. At best I might be a bit more empathetic. But then I think that those of us who have "made it" in a profession may also be at risk of underestimating other people's lived experiences. When I worked for the NHS I knew a female gynaecologist who was very harsh to her patients with PMT - " I wouldn't have got to be a consultant if I took a week a month off feeling sorry for myself " was her attitude. In the same way, I knew "survivors" of mental health services who were violently opposed to giving ADHD kids Ritalin because of their experience with antipsychotics. They could not see that not all psychiatric drugs are evil. Yes, I have been there, done that, taken the Ritalin and lost the teeshirt, and I am not opposed to medication, correctly prescribed and with informed consent. Other people's mileage may vary, and I have to respect that.