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 privately diagnosed aged 59. I have always coped in society, except when I started school and was selectively mute, first for 3 months then on and off for shorter periods for the next couple of years. There are few things about me that would strike a stranger as being out of the neurotypical norm. I have problems, however, sensory and communicative and high levels of anxiety. My life only made sense to me when, by accident, I realised that I was autistic. I'm very thankful that I was fortunate enough to be able to afford to get a private assessment and diagnosis, as this validated my entire life experience. I rather think that under-recognition and under-diagnosis of autism is a greater problem.
Hello Martin,
Many thanks for your considered response.
I agree that when done correctly ASD diagnosis is transformative for people, it certainly was for me. I also agree that there is under diagnosis of ASD for adults.
You are a bit older than me and my understanding from my own experience is that being diagnosed in the 1980s as I was is rare. I imagine when you were at school it was unheard of to be diagnosed with autism?
In regards to the example you give selective mutism is a condition in its own right. If a child is presenting like that today they would be referred to a Speech and Language Therapist. It is more common in people with ASD so does add weight to a diagnosis.
My question isn't in relation to generations who went to school when ASD is unheard of.
There is much better awareness now in schools (although there is always room for improvement) and this has led to massive waiting lists sometimes of years. I heard of one waiting list of four years.
This is being dealt with by farming this work out to the private and independent for over 2k a time. There is massive variation in the quality of this work and when I compare the services I worked for in the NHS to my recent independent sector experience I can confidently say that children and young people who don't have ASD are being diagnosed.
I am aware of cases who have been seen for many hours by NHS specialists and deemed to not meet the criteria who go private and then are diagnosed.
The 'gold standard' assessment tools are not fit for purpose as described above and it's a closed shop in terms of discussing alternatives. Everybody has developed their own questions and diagnosis has become somewhat more of an art.
For me an ASD diagnosis can be very helpful but I am concerned about people who don't have ASD getting the diagnosis as this is a life long label and does inform self image.
I wonder if I should be concerned and whether people should be able to self identify? Does it matter what labels we give our children?
All this is very contentious and I don't profess to know the answers but very grateful to be able to discuss.
Regards
I don't think that 'less obvious' autism was diagnosed at all until the early to mid 1990s, so there is no way I would have been diagnosed as a child. I was just regarded as being 'very shy'. Though there has been a reasonable amount of research into the genetic element of autism, it is still a 'descriptive condition', characterised by a 'bag of traits', that is very mutable. Each new iteration of diagnostic guidelines is different. It is entirely possible that autism is more than one condition, with more than one causation, merely lumped together; variety in autism-associated genetics suggests that this is the case. Until more definitive, perhaps neurological, diagnostic testing can be done I don't think that accuracy in diagnosis is going to improve greatly.
Thanks for explaining.