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[Misc] Autism - Neurodiversity



Neville's Breakfast

Well-known member
May 1, 2016
13,357
Oxton, Birkenhead
I think it is worthwhile to comment that some of the challenges some parents posting on here, dealing with kids with severe autism (and additional issues in many cases) is a very different thing from Aspergers, which can manifest in a way that the person can stumble through life, sometimes with skills that serve them well. The former cohort clearly present massive challenges for parents. I can't comment on this, as I know nothing about it. Clearly this is not something one ponders in the quite of an afternoon - it is a constant and irrefutable fact that rules one's life, I would imagine.

The latter cohort, as far as I can see, can be hard to diagnose and hard to treat. I haven't event bothered thinking about a formal diagnosis by trained phycologists. This is in part because there is no way I would get a referral. From the outside, done well at work, no criminal convictions, lovely family, what's not to like?

I looked up ADOS/ADIR and this looks like some sort of private thing outside the NHS. Our 12 year old has an ADHD designation at school. But she was put on a 3 year waiting list for NHS assessment so the provision she gets is based on an informal acceptance by the school. Prioritizing diagnosis appears to be driven by the usual criteria: is the condition a danger to you and others? If not, you have to push and push to get anywhere. We did some private stuff for the nipper but it was £100s of spend to be told what we already knew. So I really can't be arsed to waste time and money on behalf of my own condition.

I don't feel the need to be told things I already know, or given guidance on mitigating against the worst aspect of my behaviours. I know where the problems lie. The only way I can mitigate against serious conflict is to avoid interacting with people who trigger me. I won't bore you with the details but I can very quickly reach a point where I feel under attack (when I know that I'm not actually under attack), and do not have the ability to resolve the conundrum. It boils down to one thing - how one feels at a particular time. I can't describe the emotion but it is extreme. I can fight or I can withdraw, and it is entirely fighting or withdrawing for a feeling of being under attack. Telling myself I am not under attack is not effective.

I have had no help at work navigating interactions. I've had some major bust ups and it would be useful if people knew what not to do to trigger me (ambiguous requests and things sent for information but not labeled as such and of course poor grammar and spelling, do my head in). My HoD sent me a web link which simply made me angry. I am not in need of (or willing to take) SSRIs or antipsychotics (FFS!), then only meds used for Aspergers (related) conditions. And I am not interested in behavioural therapy. Having seen a psychologist when depressed after my second marriage broke up I now it would simply make me angry. But....I have trained myself to be more gentle with dick heads at work, and not send angry or offensive emails by waiting a day to reply to the worst of the plummery.

I don't mither about the world at large (like my dad did). It interests me but it is what it is. I can function well enough if left alone and not persistently annoyed by people around me.

(Incidentally I have all the other unpredictable quirks equivalent to those shown by the TV wild life man - a liking for odd music, obsessive privacy in some areas, secret talents, and the ability to be unintentionally attractive to people quite unsuited to me- lol!).

I am also blessed with knowing people with whom I get on with extremely well. With all that, and the edge my neurodiversity gives me in many life and work situations, on the whole I'm on the super power spectrum, and am not complaining. Now I think I know what's 'wrong' with me, the melancholy and feelings of isolation that used to affect me, and the disappointment when I find myself left out in large social gatherings (which still always happens) are gone. It is what it is. I don't even want help.

What I'm trying to say is that I'm more than happy with my lot, and can take my rough with my smooth, but my heart goes out to those struggling with debilitating problems in themselves or their kids. Perhaps the spectrum notion is unhelpful, and a line break needed where Aspergers ends and autism starts. It may ensure Mrs T never calls me 'f***ing autistic' again when I annoy her, at very least.
Actually ADOS/ADIR is offered on the NHS. Two therapists from my wife’s old team at a private school quit to work as NHS therapists carrying out these assessments. Paying privately is an option to speed up the process. I agree you would be low priority. The point of diagnosis is allocation of funding rather than anything else so it would be used for tribunal evidence for children and things like supported living for adults. By the way I couldn’t agree more about drugs. We are living in the midst of a gigantic prescription drugs experiment and I am glad to say the NHS is now exploring other paths to pull back from the worst excesses of the American experience. Drugs simply kick the can down the road in a lot of cases and the task of weaning off creates a bigger problem.
 

jcdenton08

Enemy of the People
NSC Licker Extraordinaire
Oct 17, 2008
10,242
Actually ADOS/ADIR is offered on the NHS. Two therapists from my wife’s old team at a private school quit to work as NHS therapists carrying out these assessments. Paying privately is an option to speed up the process. I agree you would be low priority. The point of diagnosis is allocation of funding rather than anything else so it would be used for tribunal evidence for children and things like supported living for adults. By the way I couldn’t agree more about drugs. We are living in the midst of a gigantic prescription drugs experiment and I am glad to say the NHS is now exploring other paths to pull back from the worst excesses of the American experience. Drugs simply kick the can down the road in a lot of cases and the task of weaning off creates a bigger problem.
SSRI’s and other mental health treatment drugs have been crucial life-saving medicines for millions of people. They just aren’t meant for everyone - feeling a bit sad isn’t depression. When they get prescribed like a miracle cure or billed “happy pills” in the public consciousness, it does the image of them no good. They don’t make you happy, they manage your serotonin. You either need them or you don’t.

I started taking them at 15 when I was off the rails - came off them for a few years in my twenties and went completely off the rails again. I began self medicating, and have been back on them ever since (I’m in my mid-thirties).

It’s like VAR. The problem isn’t medicine, it’s the application of it by the practitioners and the guidelines for issuing them.
 

Harry Wilson's tackle

Harry Wilson's Tackle
NSC Licker Extraordinaire
Oct 8, 2003
48,597
Faversham
Actually ADOS/ADIR is offered on the NHS. Two therapists from my wife’s old team at a private school quit to work as NHS therapists carrying out these assessments. Paying privately is an option to speed up the process. I agree you would be low priority. The point of diagnosis is allocation of funding rather than anything else so it would be used for tribunal evidence for children and things like supported living for adults. By the way I couldn’t agree more about drugs. We are living in the midst of a gigantic prescription drugs experiment and I am glad to say the NHS is now exploring other paths to pull back from the worst excesses of the American experience. Drugs simply kick the can down the road in a lot of cases and the task of weaning off creates a bigger problem.
Many thanks - very helpful :thumbsup:
 

Harry Wilson's tackle

Harry Wilson's Tackle
NSC Licker Extraordinaire
Oct 8, 2003
48,597
Faversham
SSRI’s and other mental health treatment drugs have been crucial life-saving medicines for millions of people. They just aren’t meant for everyone - feeling a bit sad isn’t depression. When they get prescribed like a miracle cure or billed “happy pills” in the public consciousness, it does the image of them no good. They don’t make you happy, they manage your serotonin. You either need them or you don’t.

I started taking them at 15 when I was off the rails - came off them for a few years in my twenties and went completely off the rails again. I began self medicating, and have been back on them ever since (I’m in my mid-thirties).

It’s like VAR. The problem isn’t medicine, it’s the application of it by the practitioners and the guidelines for issuing them.
Very true and insightful.

I would not wish to conflate the US with the UK. A mate of mine jumped ship from the company that pedaled oxycodone (for pain) and was eviscerated for misleading promotion, and the model un the US is prone to issues we avoid. That said they never approved thalidomide for anxious pregnant women....

SSRIs as you know can be irreversibly addictive in some people. A friend of mind has been in thrall to this for more than 20 years.

But a short sharp intervention can be useful in reactive depression.

So a medical model may be appropriate, but there is no 'one size fits all' and in some types of person the most commonly used solution is inappropriate.

My old pal Bob the Social Worker told me years ago that the medics seemed too keen to prescribe meds to people in difficulty, where practical support would sever better for helping them sort out their lives. One would hope that this has changed somewhat. The emergence in the UK of the NICE guidelines has to be a step in a better direction.
 


jcdenton08

Enemy of the People
NSC Licker Extraordinaire
Oct 17, 2008
10,242
Very true and insightful.

I would not wish to conflate he US with the UK. A mate of mine jumped ship from the company that pedaled oxycodone (for pain) was eviscerated, and the model un the US is prone to issues we avoid. That said they never approved thalidomide for anxious pregnant women....

SSRIs as you know can be irreversibly addictive in some people. A friend of mind has been in thrall to this for more than 20 years.

But a short sharp intervention can be useful in reactive depression.

So a medical model may be appropriate, but there is no 'one size fits all' and in some types of person the most commonly used solution is inappropriate.

My old pal Bob the Social Worker told me years ago that the medics seemed too keen to prescribe meds to people in difficulty, where practical support would sever better for helping them sort out their lives. One would hope that this has changed somewhat. The emergence in the UK of the NICE guidelines has to be a step in a better direction.
There is a big, room filling word in there; “reactive” depression. Reactive depression is very real and can be anything from a months long downer from grief to postnatal depression.

What they used to call “clinical depression” is such a different beast. There is a big history of depression, many times ending in suicide, on both sides of my family from the present day, going back generations - prior to modern SSRI’s being developed.

Both are often very effectively treated by SSRI’s, most successfully in conjunction with cognitive therapy, but they won’t work for everybody.

Psychiatrist to manic depressive (bipolar) patient: “Is medicine magic? You know that it’s not. I know it’s not perfect, but it’s all we’ve got”.

- Tom Kitt, Next to Normal.
 
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joydivisionovengloves

Well-known member
Aug 10, 2019
352
N/E Somerset
I'm half way through reading Strong Female Character by the comedian Fern Brady. She was diagnosed with Autism a couple of years ago and the book is a memoir up to that time. If you want a warts and all look into the world of an undiagnosed young woman it's an amazing read.
 

Fungus

Well-known member
NSC Licker Extraordinaire
May 21, 2004
7,018
Truro
Thank you - I've sent him the link to check out if he wishes, I certainly intend to so that I can help and support him as best I can.
I wish I’d known a lot of this stuff many years ago, having been on the receiving end of some bewildering arguments and meltdowns that left me wondering if I was a horrible husband or even a horrible human being. I’ve taken a general interest in the subject previously, but I’ve found this book brings it into the real world for me, which is making me re-evaluate a lot of past “situations”. I wasn’t really guilty, but I can adjust to accommodate and support.
 


Neville's Breakfast

Well-known member
May 1, 2016
13,357
Oxton, Birkenhead

jcdenton08

Enemy of the People
NSC Licker Extraordinaire
Oct 17, 2008
10,242
This goes back to 2018.

https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/.

When I first heard about the following it said the NHS was trying to avoid the worst excesses of the American prescription opioid situation. I can’t find that article but that is why I referenced America as the motivation. Here is what is now happening in the UK;

Nobody treats autism with opioids.
 


Harry Wilson's tackle

Harry Wilson's Tackle
NSC Licker Extraordinaire
Oct 8, 2003
48,597
Faversham
There is a big, room filling word in there; “reactive” depression. Reactive depression is very real and can be anything from a months long downer from grief to postnatal depression.

What they used to call “clinical depression” is such a different beast. There is a big history of depression, many times ending in suicide, on both sides of my family from the present day, going back generations - prior to modern SSRI’s being developed.

Both are often very effectively treated by SSRI’s, most successfully in conjunction with cognitive therapy, but they won’t work for everybody.

Psychiatrist to manic depressive (bipolar) patient: “Is medicine magic? You know that it’s not. I know it’s not perfect, but it’s all we’ve got”.

- Tom Kitt, Next to Normal.
Well, yes, it is a circular argument with which I agree: if it worked it was the right intervention.

Best wishes :thumbsup:
 

Weststander

Well-known member
NSC Licker Extraordinaire
Aug 25, 2011
62,630
Withdean area
Partially related to this, because Chris Packham's autism was mocked as part of an orchestrated online campaign of hate by a bunch of posh hunting types. He won his libel case against them. His entire reputation was at stake.
https://www.bbc.co.uk/news/uk-england-hampshire-65707076

If you can be bothered google Dominic Wightman. A typically smug posh boy, cringy photo shoots, a nasty piece of work. Imho the worst of this country.
 

Herr Tubthumper

Well-known member
NSC Licker Extraordinaire
Jul 11, 2003
58,853
The Fatherland


Nobby

Well-known member
Sep 29, 2007
2,527
Partially related to this, because Chris Packham's autism was mocked as part of an orchestrated online campaign of hate by a bunch of posh hunting types. He won his libel case against them. His entire reputation was at stake.
https://www.bbc.co.uk/news/uk-england-hampshire-65707076

If you can be bothered google Dominic Wightman. A typically smug posh boy, cringy photo shoots, a nasty piece of work. Imho the worst of this country.
SCUM - nothing more nothing less
 

BadFish

Huge Member
Oct 19, 2003
16,894
I wanted to share that I got my own inattentive ADHD diagnosis today. It took a couple of appointments spaced 6 weeks apart.

Never felt so conflicted about this, I told my youngest (also ADHD) that i had some news . . . he asked "good or bad". This is a tough question.

Nice to have this label instead of the ones I had when I was younger.

Starting on Vyvance tomorrow to see how it goes.
 

Half Time Pies

Well-known member
Sep 7, 2003
1,396
Brighton
I wanted to share that I got my own inattentive ADHD diagnosis today. It took a couple of appointments spaced 6 weeks apart.

Never felt so conflicted about this, I told my youngest (also ADHD) that i had some news . . . he asked "good or bad". This is a tough question.

Nice to have this label instead of the ones I had when I was younger.

Starting on Vyvance tomorrow to see how it goes.

I was diagnosed with severe ADHD combined type about 3 years ago around the same time as my son. I think I know what you mean when you say that you are unsure about whether its 'good' or 'bad'!

In my case having a diagnosis suddenly everything in my past made so much sense. I realised like you that all the labels I had as a child were unfair and the belief I had always had that if I just pulled myself together I could sort myself out was wrong. I suddenly realised it wasn't a choice it was just the way that I was wired.

I had coping mechanisms to mask my difficulties, I took on too much, everything was left to the last minute and I was running permanently in a state of stress, which provided me with the adrenaline and chemicals I needed to function, but always in the end resulted in burnout, anxiety and depression. I had a whole raft of excuses lined up for being late and forgetting to do things, whenever I lost something it was always someone else's fault and my past issues with Drugs and Alcohol were clearly ways of self medicating. I have since talked to a lot of people with ADHD and it's so funny how a lot of people lives have taken a very similar path to mine!

The diagnosis allowed me to begin to take a different path however there have been some negatives. I have had an overwhelming sense of sadness for what could have been if I had known earlier. I feel sad for my childhood and relationship with my Dad (who is also clearly undiagnosed neurodiverse) and bad for some of our parenting of my son before we were aware of his ADHD. Although things now make sense to me I find it incredibly frustrating that many people aren't that sympathetic or interested when I tell them.

Ive heard people talk about ADHD as being their superpower and it’s still difficult for me to see it that way. They way I look at it, it is really remarkable that I have achieved what I have despite having the challenges that come with ADHD! The main benefit from diagnosis has been finally cutting myself some slack.

The medication has helped me but I had to work on getting the type and dosage right first, I initially lost a bit of motivation and had to go back to the psychiatrist who increased the dosage. It’s helped me to calm my life down a bit and get some things in place to help me. Now through a combination of putting healthy coping strategies in place, getting the right support and improving things like diet, sleep and exercise I now rarely take it but it has taken me a couple of years to get to this point.
 
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BadFish

Huge Member
Oct 19, 2003
16,894
I was diagnosed with severe ADHD combined type about 3 years ago around the same time as my son. I think I know what you mean when you say that you are unsure about whether its 'good' or 'bad'!

In my case having a diagnosis suddenly everything in my past made so much sense. I realised like you that all the labels I had as a child were unfair and the belief I had always had that if I just pulled myself together I could sort myself out was wrong. I suddenly realised it wasn't a choice it was just the way that I was wired.

I had coping mechanisms to mask my difficulties, I took on too much, everything was left to the last minute and I was running permanently in a state of stress, which provided me with the adrenaline and chemicals I needed to function, but always in the end resulted in burnout, anxiety and depression. I had a whole raft of excuses lined up for being late and forgetting to do things, whenever I lost something it was always someone else's fault and my past issues with Drugs and Alcohol were clearly ways of self medicating. I have since talked to a lot of people with ADHD and it's so funny how a lot of people lives have taken a very similar path to mine!

The diagnosis allowed me to begin to take a different path however there have been some negatives. I have had an overwhelming sense of sadness for what could have been if I had known earlier. I felt sad for my childhood and relationship with my Dad (who is also clearly undiagnosed neurodiverse) and bad for some of our parenting of my son before we were aware of his ADHD. Although things now made sense to me I also found myself getting frustrated that many people weren’t that sympathetic or interested when I told them.

Ive heard people talk about ADHD as being their superpower and it’s still difficult for me to see it that way. They way I look at it, it is really remarkable that I have achieved what I have despite having the challenges that come with ADHD! The main benefit from diagnosis has been finally cutting myself some slack.

The medication has helped me but I had to work on getting the type and dosage right first, I initially lost a bit of motivation and had to go back to the psychiatrist who increased the dosage. It’s helped me to calm my life down a bit and get some things in place to help me. Now through a combination of putting healthy coping strategies in place, getting the right support in place and improving things like diet, sleep and exercise I now rarely take it but it has taken me a couple of years to get to this point.
Wow, thanks for this. It explains my jumbled up feeling really well. I am giving myself time to process everything before I put pen to paper to describe how this whole process has made me feel.

I wish I had started documenting it from the beginning of my realisation (but you know, organisation and executive functioning).

I have had a day on my meds today and although I feel a little 'speedy' my concentration has been better than i have ever experienced. Possibly even more so than when I am hyper focussed on something.

Thanks again for your thoughts and your twist at the end of not needing medication anymore is interesting/inspiring.
 


KZNSeagull

Well-known member
Nov 26, 2007
19,557
Wolsingham, County Durham
Just had one of the best phone calls ever. My autistic son has been volunteering at a horse welfare charity one day a week since the beginning of the year. They were quite dubious about him going at first but they have been really good with him and he has progressed so far that they now want to pay him something every week. He is 24 and this is the first time anyone has seen so much worth in him that they are willing to pay for his work!! I am so happy and proud :clap:
 

Solid at the back

Well-known member
Sep 1, 2010
2,599
Glorious Shoreham by Sea
Just had one of the best phone calls ever. My autistic son has been volunteering at a horse welfare charity one day a week since the beginning of the year. They were quite dubious about him going at first but they have been really good with him and he has progressed so far that they now want to pay him something every week. He is 24 and this is the first time anyone has seen so much worth in him that they are willing to pay for his work!! I am so happy and proud :clap:

This is just amazing.
 

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