Discussion in 'General ME/CFS news' started by John Mac, Mar 27, 2019.
I'll get on the case, Robert Buckland is my local MP.
I've met him & chatted about ME, Suramin & autism.
Update: don't expect anything profound in return. As Solicitor General, his job to write (& then discard) Brexit legislation.
Not sure why he says:
This statement is also found on the National Autistic Society website.
Surely autism is as much as disease as say bipolar, schizophrenia, or indeed ME/CFS.
I know that those with autism do not like their condition to be pathologized, and often don't like talk about treatments or of being cured (I found this out myself when I posted a possibly helpful treatment for the anxiety of autism on an autism forum, and got slated for my efforts).
However, in scientific terms, how would autism be excluded from being a disease, or at least a syndrome?
In any case, within the autism spectrum, you have Asperger's syndrome.
It's not a disease.
Syndrome does not imply it's a disease, at least not as far as I know - it means the precise mechanisms/reasons for it are unknown.
Aspergers is, and always has been, part of who I am. It's not always a positive part, although it can be, but it is part of me.
It no more needs curing than your taste in music, or what books you like to read (whatever they are, just examples)
Just as an aside, a few years back Kaiser Permanente had a class action lawsuit for refusing to provide behavioral therapy for autistic children. The settlement was up to $9 million to reimburse members for out-of-pocket expenses and to fund autism research.
Are you saying Wonko it is more an outlier region within the broad spectrum of personality characteristics (sorry, phraseology is failing me). Although not at all the same, I suppose dyslexia is not something to be cured either, but just part of who someone is.
Not really no. Depends on what you mean by 'personality characteristics'.
Caution - fuzzy commonly used, but ultimately wrong, phrases alert!! (ETA - cliche- that's the damn word!!)
Aspergers means I see things a little differently, that I have no native ability to understand/interpret other people, motives, emotions, drives, feelings etc. It also gives me focus, when properly directed, useful, otherwise not so.
I had 'superpowers' but people were my kryptonite
Living with this ahs undoubtedly impacted and directed my personality, a person cannot appreciate a beautiful view if they are blind. Their personality is impacted by this limitation.
So, at least IMO, aspergers is not a collection of personality characteristics, although I can see how someone who's not aspie might view it that way, as all they seen is the external projection.
I said I was phraseology challenged. Maybe would have been closer if I'd said "broad spectrum of the different ways people perceive the world"? Very hard to step into someone else's shoes isn't it.
Probably - it's difficult to say from this side of the table lol.
Aspies, IMO, don't need treatment, but as they have to interact with a world full of 'neurotypical' people they do need help in doing so. Some of this is help in understanding people, in many many respects, and some is in learning to mask themselves.
IMO the insurance company was correct in describing what's needed as education, rather than behavioural modification. Where they were wrong is in refusing to pay for it, as it is a medical need, and even worse what the system mentioned was, as far as I remember, serious behaviour modification. Nasty stuff, damaged people.
Highly regarded at the time, for much the same reasons as CBT/GET have been - because it was something they could do, something they could make money from, something to make themselves feel good about 'helping'. It didn't. At least not for many.
Always of course assuming I haven't grabbed the wrong end of the carrot, and I'm not remembering something else.
I could say the same thing about the ADHD I've always had (which was never treated, as decades ago there was not the awareness that there is now in schools about ADHD).
Because ADHD dramatically alters your cognitive functioning, it many ways it starts to define who you are and how you think. ADHD has been the bane of my existence, because it makes learning and remembering facts and details difficult.
Yet it also brings certain positive qualities, as in some ways it can make you better at understanding the deeper essence of subjects like science and philosophy, because with ADHD you cannot easy grasp details of a subject, so instead your mind apprehends the deeper structures, which can create a more in-depth understanding.
But much as ADHD has defined who I am and how I think, I still consider it a disease, and would love to find an effective cure for it.
A syndrome can be upgraded to a disease once the causal mechanism is uncovered. When we know what causes chronic fatigue syndrome, it would have to be renamed chronic fatigue disease.
And aspergers has now been integrated into 'autistic spectrum disorder' - ASD - no longer a syndrome.
Aspergers gave me the ability to solve problems others couldn't, simply because of the way I thought and the way my mask developed, the things I learned to do with what had initially just been a 'normal' social mask that everyone has.
The mask of an aspie is a tad more comprehensive than for a neurotypical because it has to be. I 'learnt' how to make it do much more.
In my areas I was smart.
Put a person in the room with me, even if I didn't have to directly interact with them, and I probably dropped 60 points.
I could still do the basics, much faster and more comprehensively than most, but I was essentially just on the bright side of normal. None of my more unique abilities had the resources to properly engage.
I still had access to experience and knowledge I had built up, even if a lot of cognitive resources were taken up in dealing with people processing.
Make me interact with them and I was rude/slow/retarded.
It took me a very long time, and I needed a lot of very patient help, to get this civilised and charming lol.
I suspect that having ME may also have helped in that respect, in that I finally came up against something I couldn't outthink, that I couldn't solve.
I learnt a little humility and patience.
I finally understood that people may not have been being obtuse, lazy, or cheating when they claimed not to understand me, when they couldn't follow simple instructions, when they couldn't see the differences in similar code simply by looking at it, and know how to combine it to do a different job, rather than reading it, etc. Simple trivial things that people appeared completely unable to do, I finally learned that this was because they couldn't do them, or even understand what they were supposed to do.
When they looked at things they simply didn't see what I saw.
Wouldn't have happened without a few of the bad things that happened to me, ME amongst them
I’m not saying it’s a disease either, but I think sometimes we forget that most children with autism have many more symptoms than the well known social/behavioral.
Around 56% of children with autism are borderline (IQ < 85) or severely intellectually disabled (IQ < 70) and have a constellation of other comorbid physiological conditions such as
light, touch and sound sensitivity, major sleep disturbances and insomnia, unusually common gut problems such as IBD/colitis/Crohn’s or constipation, lack of coordination/clumsiness and reduced fine motor control, 25% of children have seizures, and probably more.
I feel autism for many children goes beyond the spectrum of human personality characteristics, no?
oh yeah, I had an 'interesting' childhood.
Despite the new naming I still view aspergers and autism as effectively two different things, largely separated by the ability to communicate, at all, or at least beyond tantrums.
I wasn't diagnosed until 2012, I wasn't quite bad enough as a child to be referred for autism (not that I know, this is all supposition), and aspergers - no one in the NE of England had ever heard of it.
I couldn't read, or at least understand what the things meant, until I was 14 - but I could spell and tell you the definition of every word in a dictionary by the age of 3. There was just no connection with anything beyond that.
I hated being touched, still do a lot of the time, it's work to not show it, it's even more work to not feel it. I hate music, especially live music, anything that's repetitive. I understand some of the issues, maybe not the degree. I used to have many more seizures but I still have them occasionally, just not as many or as serious now I have eliminated most of the triggers. I still have the indignant fury but I learnt ways of controlling that so it at least doesn't affect others, at least not much.
Things, they can be dealt with, if people learn how. Not through words, through experience, with help.
I would question the whole IQ thing, simply because someone doesn't test well doesn't mean they couldn't do it if they understood the point, or even what was being asked. I had this problem for many years, even past my childhood.
IMO, and only my opinion, I think that many children with autism need help in developing a mask, until that happens the world can be a truly bewildering and terrifying place. Until your brain grasps little things like cause and effect, that other people aren't rogue pieces of yourself, or monsters, then life can be 'confusing'.
For some it never happens, or their mask is inadequate and cripples them. Everyone's different, and in a different environment. they all need the right help, for them, to help them understand the world. Of course there will be people with autism who aren't particularly bright, there are lots of neurotypical people who aren't either. Help them with understanding the basics of how things work, understanding cause and effect, and give them some understanding of what people are, and most will be okay.
That doesn't mean they will be 'normal' or that they won't need support. It just means that they should have as much of a chance of being happy as anyone else.
Didn't happen for me until far too late, and not from anyone with training, just a very kind, patient woman.
ETA - That said there are unfortunately children where the wiring is so bad that they will probably never make sense of their environment, where communication is never going to work because things are just too confusing for the brains native ability to make sense of the nonsensical to be able to succeed. This a problem I have no insight into and I don't think anyone has.
Regarding IQ yes I agree, it can be a convoluted measure. What I was trying to convey is that a significant percentage of people with autism have pretty profound intellectual disability.
It’s not about not being bright like some neurotypical people. For example many will never be able to communicate with sentences and as adults use only a handful of words. Many are completely nonverbal and do not comprehend speech fully. Many cannot self-care and are completely dependent on parents/caretakers their entire lives.
Separate names with a comma.