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.
It's nice to meet you. Her is the link for the article.
https://eprints.soton.ac.uk/450987/
I don't have a copy of the full text to hand. It includes some amazing maths and images of the brain. Very small sample but ripe for being expanded on in my opinion.
I really enjoyed reading your post. Many of the people you mention I am a big fan of. Also love the line
'Specific wirings provide society with specific functions'.
These genetic variants have been investigated in research settings using microarray techniques, which can process large amounts of genetic data. It is possible, once a useful number of autism linked genetic probes have been identified, that this approach could be used for clinical screening/diagnosis. It can even be used for epigenetic variation, where chemical modification of DNA controls when and where genes are expressed. At present researchers are only looking at autistic and allistic samples to detect differences that seem to be relevant.
NAS83686 said:What has been found with remarkable accuracy is the way the brain communicates internally between regions which appears to have a very specific signature
This whole discussion is interesting and especially ^^ this. Do you have a link?
I was never diagnosed, we moved around too much, just assumed shy, introverted, creative and a bit too pragmatic. But then when I asked for help reading I never received it. What followed in to my 20's was a series of never reaching 'milestones' - difficulty working out how to manage school and a full-time job, difficulty keeping a job and keeping friends. Being called a ghost and assumed I'd figure it out as I was highly intelligent. I was in the States and left to fend for myself. I ended up homeless for a bit. What was available to someone incredibly poor with unknown digestive issues were libraries and art galleries. But this is before the world was taken over by ruthless lighting and jet-engine level public loos. I buried my head in books and fell into creative technical work with a mentor who I felt I could relate with. Rare and lucky.
Over the last 20 years, I've learned about social constructs and contracts, economic and value-based trajectories including a sort of neoliberal dominance. Money is smoke and mirrors. Social signalling and tribal inclusions are a smoke and mirrors and a majority of people seem to actually want the phantasy. They become angry if you turn the lights on in the middle of a performance - to give an analogy to social constructs being a sort of 'theatre'.
Jung's massive body of work on Archetypes exposed a few strange intricacies similar to Lacan's suggestion that Autistics cannot seem to create defence mechanisms. Jung noted a type who didn't appear to sublimate. Freud liked the theatre and didn't like autistics, and the anti-psychiatry movement aimed at helping those overrun by society a little room to breathe out side of societies dysfunctions. Deleuze and Guattari blew everything apart exposing what I would call a great divide between Autistic-Analytic and the Neurotic-Paranoiac. These differences potentially reduce to a polarised primary function (let's assume those poles are a wide and giving as North and South, where does the needle flip or the water begin to spin the other way down the drain).
When Jung talks about The Type Problem in Aesthetics, with the Introverted Type being more sensitive (sensory-perception), inward, seeing the object having a life of it's own and perceiving seemingly invisible systems and the Extroverted inclinations toward the need for external behaviours, cold hard facts, the object being something to infuse life into, I believe he is touching on what is now termed NeuroDivergent vs NeuroTypical, with ADHD literally being a wildcard. But I do know many introverted individuals who have no problem with social cues other than they just don't like the covert hierarchal games.
From my point of view, there is a middle ground most can meet at but it takes dialectic discourse and the ability to check my bias, which unfortunately might be easier if not just reinforced for the Introvert/Divergent. I can see 3 key elements at play with Autistic individuals: Monotropism, a different Salience Network (sensing things as too real and everything-all-at-once) and a different use of language/semiotics. Above and around these, added functions or misfirings can be assessed. One thing which seems overlooked is the need for a brain to function in a particular manner which might hinder it's use in ways which most assume every brain should (executive functions for instance). We need to stop assuming the human is homogenised to begin with. However, nothing good comes from absolute isolation. Should we find a majority of composers dyslexic then there is substance. It's time to do away with "My" autism. Specific wirings provide society with specific functions. I do wish there was more neuro-imaging which could potentially express not just the ability to use the brain in different ways in order to conceive of the same issues, but also to force the medical industry to Stop prescribing autistics the wrong drugs for Actual Anxiety, as it is not a bit of theatrics with left-brain language reasoning.
But I agree the "Industry" needs a clean sweep. Society plays out very different than it did 50 years ago.
Chesterton, Orwell, Erich Fromm, and so on all made calculations or future trajectories should society continue to value something which will cause a decline. It's stunning these have been packed away or that medical research is not adequately overseen by Philosophy, philosophy not adequately over seen by psychology, neither playing a role in proposals for Neuroscience...