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Autism Spectrum Disorders (ASD): Compendium Thread

Arghhh (yet again!): I wrote to my local Autism Service recently, just asking if they could confirm that my Assessment will go ahead in late October, as arranged...only to discover that it actually takes place beginning the 22nd of March!
 
Steven said:
Arghhh (yet again!): I wrote to my local Autism Service recently, just asking if they could confirm that my Assessment will go ahead in late October, as arranged...only to discover that it actually takes place beginning the 22nd of March!
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The UK NHS services for neurodiversity, mental health and gender are terrible.

But you seem to have lucked out with an early appointment - though that sucks in its own way.

I've been waiting about 5 years for an adult autism assessment, gave up on gender specialist assessment (it would be another 7+ years), and have been given an expected further 2+ years wait for psychological therapy (on top of the 5 years already waited).

During that time they have messed up records, forgotten dates, cancelled, and bounced me between services and so on many, many times.

Edit: Although primarily about gender services, the same sort of thing exists for mental health and ND stuff. Interesting video.

 
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Delightful said:
I've been waiting about 5 years for an adult autism assessment
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If you are in England then quote the autism act to them. I#m pretty sure there is a statutory right to be seen...

Edit to add: It's misleading to think about UK services in this context - different legal systems, different NHS...
 
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In case anyone reading the thread wonders about what happens at this stage:

In advance of the appointment I had to fill in a questionnaire, much the same as previous ones. I don't have anyone available to complete a second questionnaire (a 'Relative's' form)

-----

'You will be seen by two specially trained clinicians. Please allow approximately 4 hours for this assessment.

Required Information

Screening Questionnaires
You will find questionnaires attached to this email:

Questionnaire is to be completed by you (SELF)
Questionnaires are to be completed by a family member / partner / close friend or someone who knew you well as a child (OTH) (RQ)

Please complete and return the questionnaires to us.

Due to the amount of waiting time for this assessment we would be grateful if every effort could be made to attend the appointments. Should the appointment given be unsuitable, please provide us with a minimum of 7 day’s notice so this appointment can be offered to another individual.

Please contact the Integrated Autism Service Office for any appointment queries'
 
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Delightful said:
There is. But such actions do nothing (same with gender etc) - see the video.
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Forgive me if I'm teaching granny to suck eggs, but there's always Right to Choose as well. I've just had my autism diagnosis confirmed, which has taken about 2 years start-to-finish in my case. As part of that diagnosis, they have referred me to my local NHS ADHD service: minimum 3 years waiting list, at present. So, literally today, and after no little soul-searching, I've sent off my Right to Choose request. It's available for ASD diagnoses as well as ADHD.
 
Steven said:
In case anyone reading the thread wonders about what happens at this stage:

In advance of the appointment I had to fill in a questionaire, much the same as previous ones. I don't have anyone available to complete a second questionaire (a 'Relative's' form)

-----

'You will be seen by two specially trained clinicians. Please allow approximately 4 hours for this assessment.

Required Information

Screening Questionnaires
You will find questionnaires attached to this email:

Questionnaire is to be completed by you (SELF)
Questionnaires are to be completed by a family member / partner / close friend or someone who knew you well as a child (OTH) (RQ)

Please complete and return the questionnaires to us.

Due to the amount of waiting time for this assessment we would be grateful if every effort could be made to attend the appointments. Should the appointment given be unsuitable, please provide us with a minimum of 7 day’s notice so this appointment can be offered to another individual.

Please contact the Integrated Autism Service Office for any appointment queries'
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Best of luck with it, Steven. I hope you get the result you are hoping for.

I did, and it didn't really come as a surprise, but there's still something about seeing it in black-and-white which is a bit disorientating.
 
Krepostnoi said:
Forgive me if I'm teaching granny to suck eggs, but there's always Right to Choose as well. I've just had my autism diagnosis confirmed, which has taken about 2 years start-to-finish in my case. As part of that diagnosis, they have referred me to my local NHS ADHD service: minimum 3 years waiting list, at present. So, literally today, and after no little soul-searching, I've sent off my Right to Choose request. It's available for ASD diagnoses as well as ADHD.
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No, no egg sucking - I wasn't aware of this option. Basically, I've just been repeatedly assured by various services (GP, CMHT etc) that I'm on the list, but at no time has anyone mentioned that I had any options.

Thank you for the information.
 
Krepostnoi said:
Best of luck with it, Steven. I hope you get the result you are hoping for.

I did, and it didn't really come as a surprise, but there's still something about seeing it in black-and-white which is a bit disorientating.
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Thank you very much. That's really kind of you. :)

I do so wish that other people were seen as rapidly. :(
 
Krepostnoi said:
there's still something about seeing it in black-and-white which is a bit disorientating.
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Definitely. One of us (not me alas) coined the word bewilderdog (sorry @Yithian !) to nail that head-shaking-running-in-small-circles-and-wagging-tail-so-hard you-fall-over feeling.
 
Delightful said:
Ah, you're a linguistic prescriptivist - David Crystal and Samuel Johnson aren't pleased, lol :)

Would it help ease your mind to know that the OED records first usage sometime in the mid 1800s?

https://www.oed.com/dictionary/normalcy_n?tl=true#:~:text=The earliest known use of,adj., ‑cy suffix.
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True, but its cromulence was low.

SmartSelect_20240312_005642_Samsung Internet.jpg
 
Delightful said:
No, no egg sucking - I wasn't aware of this option. Basically, I've just been repeatedly assured by various services (GP, CMHT etc) that I'm on the list, but at no time has anyone mentioned that I had any options.

Thank you for the information.
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Let me know if you have any trouble finding out how to invoke this right. PMs are open if you prefer that route.
 
Dear people,

I wish to moan complain yet again about the rigidity of so-called multi-choice question/answers thingies upon questionnaires. Unfortunately (or not), we only have one internet and so I cannot complain as much as I wish to. I'm a complex, nuanced being*, dammit!


* I'm a twit who can't understand questions properly.
 
Steven said:
Dear people,

I wish to moan complain yet again about the rigidity of so-called multi-choice question/answers thingies upon questionnaires. Unfortunately (or not), we only have one internet and so I cannot complain as much as I wish to. I'm a complex, nuanced being*, dammit!


* I'm a twit who can't understand questions properly.
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You are not the only one who has trouble with multiple choice or scaled (eg frequently to never, or 1-10) questionnaires.

If I have to do the questionnaire with no available feedback on what is actually being asked and its purpose or what the scale means, it can take me a long time of overthinking before I can finish it. It is either that, or if I deem it not really necessary, I just answer whatever I feel like with little thought.:dunno:

Written word is quite difficult to comprehend if the subject is not one with which you are familiar. Verbal interactions are easier because you can get an explanation of what is expected and can correct your interpretation if you are way off base of what is actually being asked.
 
Yithian said:
I don't think anybody has found the time to count them all.

Surely we should be considering quality and not quantity here.

:evil:
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Lol. And on the other side, then, we should count the quality of those who adopt a descriptivist approach to language, like the lexicographers at the OED :)

What was it that Johnson said about trying to ascertain the language and it being like trying to lash the wind?
 
Delightful said:
Lol. And on the other side, then, we should count the quality of those who adopt a descriptivist approach to language, like the lexicographers at the OED :)

What was it that Johnson said about trying to ascertain the language and it being like trying to lash the wind?
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I don't think Johnson is asbpessimistic nor as open to the vagaries of public usage as you portray:

In this part of the work, where caprice has long wantoned° without controul, and vanity sought praise by petty reformation, I have endeavoured to proceed with a scholar’s reverence for antiquity, and a grammarian’s regard to the genius of our tongue. I have attempted few alterations, and among those few, perhaps the greater part is from the modern to the ancient practice; and I hope I may be allowed to recommend to those, whose thoughts have been, perhaps, employed too anxiously on verbal singularities, not to disturb, upon narrow views, or for minute propriety, the orthography of their fathers. It has been asserted, that for the law to be known, is of more importance than to be right. Change, says Hooker, is not made without inconvenience, even from worse to better. There is in constancy and stability a general and lasting advantage, which will always overbalance the slow improvements of gradual correction. Much less ought our written language to comply with the corruptions of oral utterance, or copy that which every variation of time or place makes different from itself, and imitate those changes, which will again be changed, while imitation is employed in observing them.

This recommendation of steadiness and uniformity does not proceed from an opinion, that particular combinations of letters have much influence on human happiness; or that truth may not be successfully taught by modes of spelling fanciful and erroneous: I am not yet so lost in lexicography, as to forget that words are the daughters of earth, and that things are the sons of heaven. Language is only the instrument of science, °and words are but the signs of ideas: I wish, however, that the instrument might be less apt to decay, and that signs might be permanent, like the things which they denote.
Source:
https://jacklynch.net/Texts/preface.html
 
Ah.

Two things.

Frideswide; you are North of the Border as I will be pretty soon...Is there a Scottish version of the Autism Act?

And how do you make this legislation work for you?
 
@Yithian
I tend to see Johnson as a prescriptivist who found out it doesn't work - after giving it the best try of anyone. Again from the preface:

“…with equal justice may the lexicographer be derided, who being able to produce no example of a nation that has preserved their words and phrases from mutability, shall imagine that his dictionary can embalm his language, and secure it from corruption and decay, that it is in his power to change sublunary nature, or clear the world at once from folly, vanity, and affectation.
With this hope, however, academies have been instituted, to guard the avenues of their languages, to retain fugitives, and repulse intruders; but their vigilance and activity have hitherto been vain; sounds are too volatile and subtile for legal restraints; to enchain syllables, and to lash the wind, are equally the undertakings of pride, unwilling to measure its desires by its strength.
…The language most likely to continue long without alteration, would be that of a nation raised a little, and but a little, above barbarity, secluded from strangers, and totally employed in procuring the conveniencies of life; wither without books…men thus busied and unlearned, having only such words as common use requires, would perhaps long continue to express the same notions by the same signs, But no such constancy can be expected in a people polished by arts, and classed by subordination, where one part of the community is sustained and accommodated by the labour of the other. Those who have much leisure to think, will always be enlarging the stock of ideas, and every increase of knowledge, whether real or fancied, will produce new words, or combinations of words. When the mind is unchained from necessity, it will range after convenience; when it is left at large in the fields of speculation, it will shift opinions; as any custom is disused, the words that expressed it must perish with it; as any opinion grows popular, it will innovate speech in the same proportion as it alters practice.”

He desired an unchanging language, but admitted that it was not like that, nor could be.

At least, that's how I read it - I am no scholar, lol :) I'm mostly going by my memory of this:


Not that any of this matters, lol :)
I guess I just don't care that much that words come in and out of fashion, and develop new meanings, and so on. Just part of the fun, imho.
 
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I think there's a growing awareness that, with the realisation of a wide range of neurodiversity in our population, there is no such thing as normal.
Accepted - socially accepted - behaviour is, in a way, an artificial expectation.
 
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