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.
This is an interesting one. I disclosed my late in life diagnosis some months ago to someone I know who's a primary school teacher. During the course of the conversation, she mentioned that in her school 11% or children have an ASD diagnosis. That struck me as shockingly high and well outside the 1-3% of society that is supposed to be autistic.
However, a couple of factors that could account: this person herself thought that there was over-diagnosis for those childern. The area is a more socio-economically deprived one, and the legacy of certain issues has made addiction etc. cause a higher number of child conditions such as foetal alocohol syndrome among others to be more common. I think that the pathologised way of thinking about autism can then creep in and a co-morbidity is assumed, or even pushed for by parents wanting/needing support including financial support. I am unsure if you took a primary school one of the 'posher' parts of the area and took the ASD numbers there if a much lower number would be on record, and thus a mean average falls more in the middle.
Let's assume so for a moment. What would that suggest? That maybe 4-5% is the accurate stat for the youngest generation. And so a steady increase in the shifting of ratios is taking effect. At the same rate, will a tipping point towards a more ASD-accommodating society be reached in... a few generations? A dozen? Because by then you have maybe a fifth of society with ASD. And, interestingly, hitting that point as technological advancement gets ever more capable of levelling the playing field? Not sure, but the signs are there.
I suspect we are a higher proportion of society than anyone realises. Obviously NTs are the majority, but I think there are many of us fly under the radar, not even realising ourselves.
Absolutely.
If there was a "diagnosis" for borderline autism then my other half would easily have that. Like there is not enough for may be what people currently consider "autism proper" but there is also the regular presence of enough criteria to not ignore the possibility.I think if you account for those that mask well enough to never get picked up for the diagnosis and the borderline cases we autists are close to 1 in 50 as an estimate. Which is really a lot of people. It's %10 of the population and even if using the American figure of 1 in 69 (lets round it up to a neat 70) and applying it to a global scale that means there are more autists than ginger haired people in the world. Which I think should really say something considering nobody is trying to "cure the ginger".
I like wolves
Martin said:That would be a 'forced marriage', not an arranged marriage, where the consent of both parties is required.
Theoretically ....
Martin said:As Thomas Hardy wrote in 'The Mayor of Casterbridge', t
This thread had me thinking about Hardy too as his novels are a very good example of what life was really like living in rural England in those times (with a few tragic romances thrown in).
Indeed so. Wolves have been a special interest of mine. I have HUGE respect for their souls and methodologies.
Interestingly, wolf packs are not primarily based on a hierarchy defined by aggression, but on family relationships. The alpha male/female system was largely evolved by researchers observing captive wolves in unnatural situations; they were usually unrelated and forced into unusually close proximity.
That would be a 'forced marriage', not an arranged marriage, where the consent of both parties is required. Far more dubious ways of marrying were once relatively common in this country. As Thomas Hardy wrote in 'The Mayor of Casterbridge', the selling and buying of wives, often at country fairs, was considered legitimate, if not laudable.
I have the viewpoint of an autistic heterosexual male, because that is what I am. Many years of intense frustration, of not being able to make any intimate connection with any woman and not knowing why, would have been avoided. The whole modern mating game would have been irrelevant. I cannot help thinking that I would have been happier in a society that arranged such matters. I knew a gay Sikh man who had an arranged marriage to a woman, I have no idea how it worked out, but the one obviously does not preclude the other.
The are some fully documented accounts of free wolves wholly accepting humans into their packs without fear or favour. A benign meritocracy - with fur = heaven!