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.
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!
Yep.
I would have been seen as one for certain (I'm sometimes called a witch now, for the nicest reasons).
Roy said: It seems even then the humans knew when someone was different.
Prejudice would have been much worse.
Where sexuality other than heterosexual is concerned, I think that over the centuries there was much more tolerance in the upper classes but very little if you were poor.
And, of course, it was illegal.
Having money made a huge difference.
However, for most of our time on earth, women have been seen as chattels, to be owned by men.
I definitely don't want to go back there!
I'm very keen on Numbers idea though of joining a pack of wolves.
Lovely idea
Actual wolves would be much more attractive than a wolf in sheeps' clothing.
I’ve been reading about some of the witch trials in the 15th century, it’s seems quite a lot of the women burnt were actually autistic women, they would often be solitary people and intelligent, they would often own property which is always a motive to get rid of someone. Some of the trial records show the evidence against them was things like not making eye contact. It seems even then the humans knew when someone was different.
I know it is over-romanticising / naive..........but I do feel, that for me, your settlement would suit me perfectly. Unfortunately, trying to seek it out (when you haven't been born there + lived your life there) is pure follly - you'd always be the outsider and never truly benefit from that sense of belonging.
Every system has it's downsides / dunkin chairs !?!?! [Don't worry, you would have escaped and found a pack of wolves to live with, happily ever after]
I live in a small outback village in Scotland, everybody knows everyone.
It is peaceful with little noise.
The idea of arranged marriage is frightening, what if you had to marry someone your didn't like?
Martin said:having marriages largely arranged by parents, would have been ideal.
That part sounds horrific to me.
I'd rather have been on my own than have an arranged marriage and there would be no chance of same sex couplings in that situation.
I'd probably be seen as a witch and killed.
Certainly, the lives of most of our ancestors would have been far easier to live as an autistic. Living in a village with maybe 50 people who all know each other, working the land with its unvarying and predictable routines, and having marriages largely arranged by parents, would have been ideal.
Something which sits uncomfortably is the sense that "normal" human behaviour is being pathologised however I think as the world is changing to become faster and more demanding, more people will be diagnosed or seen as autistic because once suitable environments are becoming less suitable. So there are more difficulties. I'm saying this because I think there are plenty of people in generations before me who were or are autistic who may just be seen as a bit odd or eccentric and got on with their lives without the additional mental health difficulties etc because the world was different then. I'm not speaking for everyone of course.
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 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.
I was diagnosed at 30. My 20s were the ten years of my life.
My wife, unfortunately my parents are both deceased.
Shardovan said: 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.
Maybe not so shocking when considering the American ratio being I in 69 and the problem with social camouflaging and personal masking being considered more a female tendency by some, with 3 males being diagnosed for every female.