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Autism Spectrum Disorders (ASD): Compendium Thread

Mr. Banooka said:
Both my wife and I were very much anti-labelling, but we’ve learned that without those labels you don’t get any help.
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I understand your prior position. It may help to know that

* an overwhelming majority of childhood diagnoses are glad as adults that they got them.
* almost all adult diagnoses are relieved at getting them
* some of the most bitter and alienated autistic adults are those where the responsible adults refused to pursue a childhood diagnosis, unless it was force majeur. This includes having got the diagnosis and then not informing the child. Lots of family breakdown here unfortunately :(



A label mostly doesn't have to be disclosed, even to close family or friends. Having that label means you don't grow up thinking you are mad, bad, stupid and don't try hard enough.
 
Sadly - tragically - it's often a lottery, a matter of good or ill luck: e.g. I had no problem getting an assessment, yet I know some in my area have been told to wait from two-to-eight years(!)

It's very hard not to be appalled by glib, arrogant, ill-informed opinions like "You cannot be autistic because you're female". We should expect educated views from healthcare professionals, not this attitude of "I know best (even if my knowledge is actually ignorant and outdated in matters wholly beyond my field of expertise". It's not bloody good enough; nor is it uncommon.

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@Frideswide

Thank you for your help in this thread. :)
 
AnonyJ said:
I've not thought about it in that way before, thank you for the idea! I don't think I'm exceptionally intelligent - but I do have a gift with reading, words, spelling and language.

The utter irony is that I have (unusually for a female) a (now) mild stutter/stammer speech issue. It was awful when I was young, and maybe affects how my tone is perceived still. If I didn't have that handicap I could have had a lifelong career as a voice actor, TV announcer, narrator or compere :(

Thank you for your replies and insights above this post, I do very much appreciate them.

My big tip is - keep everything as simple as possible. 'Good Enough' is now my standard for most things. Keeping It Simple [KIS] means a heck of lot less proverbial ball-ache in my own situation.
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KIS has become something of a mantra for me for the last few years. I have tried to pass on this approach to my sons and they are gradually realising it's benefits in certain circumstances. Pity the rest of the world nowadays endeavours to make life far more complex than it needs to be.
 
Mr. Banooka said:
We took our eldest to a psychiatrist privately because the NHS wasted 18 months to tell us he didn’t have ADHD. At this point he was easily 2 years behind academically. She spent 10 minutes with him and said that with 100% confidence that he had ADHD and that he was very likely to be Autistic as well. We got him privately tested for ADHD and it showed he was in the 98th percentile. During his test he moved 40 metres in his seat over a 20 minute period. This was in the middle of lockdown so you can imagine what homeschooling was like. We then had to pay privately for his medication because the NHS wouldn’t accept a private diagnosis. we had to start the NHS assessment again so that they would take over the issuing of his medication. It took another 12 months of £100 per month on medication before a more seasoned doctor read through all the notes, spent 5 minutes on a zoom call with our son, and concluded that she had no doubt he had ADHD and would take over his prescription with immediate effect.

We started the ASD assessment around the same time as the last round of ADHD reassessment. It took some time, and we were convinced that they would come back with a negative diagnosis. However, around March of this year, they confirmed that he is Autistic.

With our youngest son, he has more of the ’traditional’ ASD traits. It was school that recommended we have him assessed. This took place during the upheaval of lockdown, so took some time to be completed. But late last year we got the ASD diagnosis.

Both my wife and I were very much anti-labelling, but we’ve learned that without those labels you don’t get any help.
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That's appalling neglectful treatment on the part of the NHS, tantamount to gross negligence. You have more than enough to contend with I guess but I'd be sorely tempted to write a letter of complaint to the hospital and/or the Care Quality Commission.
 
Kondoru said:
Me too.

(And WHY wont they accept a private diagnosis???)
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Yes exactly, utter nonsense. Private diagnosis/care won't go on your NHS records as we found out recently to our astonishment. (so computer says it never happened). Sounds much more like "I can be arsed to investigate further" type approach. Abysmal patient care.
 
Steven said:
Sadly - tragically - it's often a lottery, a matter of good or ill luck: e.g. I had no problem getting an assessment, yet I know some in my area have been told to wait from two-to-eight years(!)

It's very hard not to be appalled by glib, arrogant, ill-informed opinions like "You cannot be autistic because you're female". We should expect educated views from healthcare professionals, not this attitude of "I know best (even if my knowledge is actually ignorant and outdated in matters wholly beyond my field of expertise". It's not bloody good enough; nor is it uncommon.

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@Frideswide

Thank you for your help in this thread. :)
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Ms PeteS recently attended a conference held by a health care regulatory authority. Some of the remarks made by senior NHS staff were so appalling that she wondered how they were allowed to be employed in the care sector. As you say a lottery as to whether you get the care you deserve,
 
Frideswide said:
@Krepostnoi FWIW, and as a non-medically qualified person, I think you're one of us and easily one of us, if you see what I mean? *

"The Autistic Community"'s accepts self-diagnosis. This acceptance is a considered, humane, political and necessary act.

* Adding that we've talked 1:1 as well as in the open so that I have grounds for this!
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I'd like to publicly acknowledge my gratitude for your generosity in helping me make sense of all this, and I also now do think I'm one of us. Have done for quite a while now, in fact. I'm still not really sure why I went for the official diagnosis, although given that I'm currently drowning in work-related paperwork and marking, it might be that I had half an eye on reasonable adjustments...
 
Mr. Banooka said:
You are seen as jumping the queue! It's pathetic. We didn't quite believe it when the private psychiatrist told us they might refuse the diagnosis.
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That's interesting. Our local CAMHS rejected my younger child's diagnosis on the ostensible basis that it was unclear what methods had been used to reach it. She had been diagnosed by the leading neurodivergence specialist in the Republic of Ireland at the time, a well-known and respected figure. This has had a very negative impact on her, and she has opted to simply turn her back on seeking any further support, e.g. by invoking Right To Choose. I am livid, because I was impressed that she had been able to ask about finding support now in readiness for what we hope will be a forthcoming college place next year for her to do her GCSEs. Instead, she's going to embark upon it with similar levels of scatteredness to those which are affecting my ability to manage my workload. "First, do no harm," huh?
 
I realised I was on the spectrum in late life - when having it officially diagnosed would be pointless.
Always remember that knowing your autistic or not, you learn coping mechanisms that allow you to function happily in life. I knew others thought differently from me and soon gave up making them think the way I do. I learned to behave as if I thought like them, just to avoid conflict.
 
Krepostnoi said:
That's interesting. Our local CAMHS rejected my younger child's diagnosis on the ostensible basis that it was unclear what methods had been used to reach it. She had been diagnosed by the leading neurodivergence specialist in the Republic of Ireland at the time, a well-known and respected figure. This has had a very negative impact on her, and she has opted to simply turn her back on seeking any further support, e.g. by invoking Right To Choose. I am livid, because I was impressed that she had been able to ask about finding support now in readiness for what we hope will be a forthcoming college place next year for her to do her GCSEs. Instead, she's going to embark upon it with similar levels of scatteredness to those which are affecting my ability to manage my workload. "First, do no harm," huh?
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That's terrible.

Interestingly enough, the private psychiatrist who diagnosed my eldest ADHD also works for our local CAMHS. I'm guessing that's the reason she knew it would get knocked back.

Is shocking.
 
Stormkhan said:
I realised I was on the spectrum in late life - when having it officially diagnosed would be pointless.
Always remember that knowing your autistic or not, you learn coping mechanisms that allow you to function happily in life. I knew others thought differently from me and soon gave up making them think the way I do. I learned to behave as if I thought like them, just to avoid conflict.
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Perhaps sadly (I really don't know) I've reached a point where I no longer behave in certain situations to avoid conflict.
 
From Parliament today:

'James Morris (Conservative) says the Tories made a manifesto commitment in 2017 and 2019 to reform the Mental Health Act. People with Autism are being kept in inappropriate accommodation for long periods, he says. There was no bill in the king’s speech; so will the PM meet MPs to discuss?

The Prime Minister says that the government does want to bring forward a bill when time allows.'

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I'm very glad that Mr Morris brought all this up. However, unfortunately he's conflated mental ill-health with Autism.
 
Steven said:
I'm very glad that Mr Morris brought all this up. However, unfortunately he's conflated mental ill-health with Autism.
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Has he? The Mental Health Act is what contains the current provisions which are being applied to autustics. It has to be reframed, and possibly the autistic bit removed if change is going to happen. Maybe I'm reading it wrong.
 
Frideswide said:
Has he? The Mental Health Act is what contains the current provisions which are being applied to autustics. It has to be reframed, and possibly the autistic bit removed if change is going to happen. Maybe I'm reading it wrong.
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I should stick to posting about things I actually know about...like my stooopid 'Save the Cats' campaign.
 
In passing...

I think the notion of the mass of autistic people being rigidly organised might be a myth.

Example:

I like to eat as healthily as I can. This should be a simple matter. But I cannot organise or stick to a straightforward routine of, say, a plan of breakfast cereal then a yogurt then some fruit etc etc. I can't 'see' this - the plan, the physical items - in my mind. Only a few iitems and yet the daily organisation seems too much for me to cope with, in prospect. I would actually welcome the routine.
 
Steven said:
In passing...

I think the notion of the mass of autistic people being rigidly organised might be a myth.

Example:

I like to eat as healthily as I can. This should be a simple matter. But I cannot organise or stick to a straightforward routine of, say, a plan of breakfast cereal then a yogurt then some fruit etc etc. I can't 'see' this - the plan, the physical items - in my mind. Only a few iitems and yet the daily organisation seems too much for me to cope with, in prospect. I would actually welcome the routine.
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Interesting that. I eat virtually the same things at the same time every day. I take the same routes to places I go no matter what and dislike disruption to any other routine. I have wondered whether I have some sort of disorder or whether having lived a good few decades I now prefer the familiar to anything else.
 
Talking of 'Rainman' stereotypes - my son with autism (now 30) - was the youngest kid ever to get a statement in our LEA at the time (he was 2 and a half, and got a place in a "special school" - where he thrived). He's always been the most sociable of all my many kids. He has so many friends, if you walk through town with him, you get constantly stopped by people he knows, saying hi. My other kids range from solitary to having lots of mates, but this son's friendships are off the scale.

He's also the only one of my kids who's married. He has a very happy life, with a wife who "gets" him completely. We recently worked together to fill in the dreaded PIP forms - he had Disability Living Allowance awarded for life but this appalling PIP replaced DLA and now apparently, he has to be reviewed every few years as they may suddenly have "cured" autism. Or something. so we spent a day filling in the forms together, for him and talking in depth about his autism and how it impacts his daily life. And that impact is massive. His wife made an observation that had never occurred to me - that he is in fact so very good as "masking" - studying people so he can fake acting like more neuro-typical people do - that its knock on effect has been he is incredibly sociable and popular. Because he had to learn to mask. She's not wrong. Now, on paper, that makes it look like he has no problem with communication skills when in fact he has loads of struggles, which wear him out by the end of every day - but on the surface, no-one would guess because he appears to be a social butterfly.

His closest friends all know about his autism - which is complicated by a couple of other conditions, one neurological and another physical. The fact he's always been easy on the eye helps and interestingly, a consultant who used to see him in clinic weekly, many years ago, said to me she had noticed how unusually goodlooking many people with autism are... People do take one look at him and love him and the fact he was always tall and strong for his age meant he never got bullied. But he loathed being forced into mainstream schooling when the special schools were closed and there was no moderate learning difficulties specialist units provided to replace them, here. He was catapulted aged 11 from a classroom with 6 other kids where he had excellent teachers and much support, to an incompetent high school with just a clueless SENCO, and thrown into the bottom set for every subject, with all the most challenging kids, behaviourally - a nightmare for him. He recently got those noise cancelling ear bud things, and has found them life-changing. I said to him, you could have done with them when you were at school.

ETA: My new lovely neighbour has a 4 year old who has autism and he's non verbal. I reassured her my son was the same and ended up with a 2:1 in Graphic Design. He left school unable to read, at 16. But went to a brilliant college that funded him an extra several years til he was ready for uni. And my lad had also been non verbal til aged about 5. It helps as a parent, to hear hopeful stories.
 
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This article is about a boy with autism who wants to adopt a dog. The animal rescue agency he and his parents went to immediately disqualified him from adopting. His family took the owner to court and the Human Rights Tribunal declared that the agency's policy to not allow people with autism to adopt its dogs is discriminatory.

https://www.cbc.ca/news/canada/lond...cue-adoptions-shot-down-by-tribunal-1.7075497

I just can't believe (but, really, sadly, I know) that some people are incredibly ignorant and bigoted about people who are autistic.
 
This seems related, and effectively argues against the agency's decision:

'In times of anxiety and distress, the reassuring presence of a dog provides comfort, distraction, and an improved sense of wellbeing. For many autistic people, the use of Animal Assisted Therapies provides opportunities to grow in confidence, practise communication skills and achieve greater focus within the school, hospital, or care home settings in which they are provided. The documented biophysical impact can help autistic people to feel less anxious and more willing to participate in therapy sessions (Ang and MacDougall, 2022).'
 
@brownmane that is /awful/ :headbang:

I agree @Steven . Horses, cats and dogs are the most fequent that I personally know of, but I can imagine that any living non-human entity could be delighted in. I wonder though, have you noticed that when "they" have a close relationship with an animal it's admirable, kind, loyal and so on. When /we/ do it it becomes pathologised :(

Years back I taught a session on writing bids. As part of the material I wrote the a proposal for The Autism Assistance Tiger. Will see if I can dig it out.
 
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