What is autism really?

[sc134]

Ever since my DS has been scheduled for CDC assessment, I have been reading a lot of the threads on Special Needs. This has set me thinking, obviously, because the emerging picture is so varied. I used to think that ASD was about little desire to communicate, but obviously that's not true. It's not about not being affectionate, and it's not about lack of introspection - amber's posts are amazing in that respect. It's not always about language difficulties. There's the lack of theory-of-other-minds interpretation, which is intriguing, but again, how many people on the spectrum would it apply to?
So, what would be the defining characteristic that is shared by all people with ASD, and which enables health professionals to say that there is such a thing as a spectrum? Perhaps having rituals or routines, or sensory overload? But then again, at what point does a routine become a symptom?
Sorry if this sounds cerebral - my way of keeping anxiety at bay is to try and understand the phenomenon

[MannyMoeAndJack]

There's the triad of impairments which I think guides the diagnostic process but my ds only met two of the three criteria 'unequivocally' - he was still dx ASD though, even though he has no routines, doesn't care about (or even notice) change, has no rituals, doesn't stim, is affectionate and so on. However, he is non-verbal and (apparently) lacks a ToM. He also has SLD, has a restricted diet and is very sensory seeeking.

Sometimes I feel that the ASD label for him is a little unsatisfactory but I'm really not sure how else he could be 'categorised'. Personally, I think SLD describes him well.

[sc134]

Thanks MannyMoeAndJack. I knew about the triad, and it seems to me that not many people on the spectrum meet all three criteria. I wonder if all three are weighed equally, though. Can I ask you how they can tell your DS lacks a theory of mind? Did he take the so-called Sally-Anne test? Many philosophers of mind today (sorry to sound like a nerd) would agree that there is no such thing as a PROOF that other minds do exist; you can test whether the belief exists, but you cannot PROVE to someone that there are other minds. All we have are facial expressions and language, and we draw inferences (often wrong ones) on the basis of them. I wonder if anyone knows about pets and children with ASD?? Pets being a good example of 'perhaps-other-minds' which also happen to be non-verbal...

[MannyMoeAndJack]

Well that's why I wrote 'apparently' lacks a ToM because we'll probably never really know for sure. My ds would not be able to take the Sally-Anne test because he wouldn't understand what he was supposed to do/understand the instructions.

Can I ask you how they can tell your DS lacks a theory of mind?

During my his ADI, we were asked questions such as, 'does your ds show sympathy with someone when they hurt themselves?' and similar.

It's not easy to determine how much my ds really understands because he's very inconsistent. However, so far, I haven't seen much evidence of him having a ToM.

[sc134]

But that's where I remain puzzled: that a child shows sympathy when someone is hurt does not mean they actually FEEL sympathy, only that they display the 'appropriate reaction'. When I was a child I laughed when my dad fell down the stairs and broke his arm, just because people falling down stairs are funny... I think I learnt the appropriate reaction after my mother's then-appropriate (we're talking 40 years ago) reaction, i.e. a substantial smacking
I am sorry if my question sounded a bit cold. I'm just trying to make sense of it all, and navigate the difficult waters of all these various tests...

[MannyMoeAndJack]

Well, I guess it's difficult to prove many things!

My ds often runs away but likes to check over his shoulder that he is being chased - giggling all the while. Does this demonstrate ToM or just that he has learnt that when he runs away, he will 100% of the time be followed and captured??

I think with something like ASD, it's how many boxes are ticked/which boxes are not ticked that determines whether a person qualifies for a dx or not.

[pagwatch]

My DS2 hits all the very severe boxes yet has a very funny sense of humour, understand when i am saying no as a teasing thing rather than really no , he loves hugs, makes great eye contact with family and loves many new experiences.
Weird really.
But then i think his asd has more to do with vaccine and gut damage than anything else - so maybe that makes a difference.

Just for us it makes very little difference so tbh I don't really care what the LEA/NHS call it.

[4nomore]

My son gets totally freaked out of other children cry and often starts to cry himself. Paediatrician ticked the box for abnormal and handed down the ASD diagnosis! When they first mooted the diagnosis I was confused because he's affectionate, mostly easy going, didn't stim at the time tho' he does a bit now (must've read the list of symptoms and decided that he fancied flapping - lol)... Then I read up and discovered, as you have, that no-one's quite sure what ASD is or isn't and that 15 years ago a lot of our ASD children would've been getting a different diagnosis.

janine

[amber32002]

Well, for me the big problems are the hyper-sensory stuff (touch, texture, smell, taste, hot/cold, sight, hearing), and the fact that I absolutely have NO clue about body language or depth-of-friendship. In the standard tests on interpreting emotional states in people, I might as well be guessing randomly. If someone says "Why don't you go ask Fred to tell Jim about the situation with Mel", I'd be totally confused, since I can only think about one person at once, and the names just don't 'stick' at all.

The higher up the spectrum we are, the more we can learn thousands of rules and seem to be coping better, I think. But if the rules change to something we've not seen before, we're utterly clueless as to how to solve it. I've had to learn just about everything from a book, not from common sense.

And even five years ago I wouldn't have had anything like this level of introspection and self-awareness (I'm fairly far into my 40s).

So, what is an ASD? A faulty filing system for information about people, a faulty logical-solving-of-some puzzles, a sensory system that either overloads really quickly or hardly at all, a very overreacting Fear system, and a need to learn everything by rules and intellect. Those are perhaps the main things, and the behaviours perhaps result from us trying to cope with those things. But all of those things can also have a positive side. We can see things you can't, hear things you can't, detect changes you can't, sometimes spot scary people faster than you can, concentrate for longer, achieve greater accuracy. It's not all bad.

I read a great blog the other day. It said heaven help the children who are heavily trained in nothing but social skills with a view to them getting some menial low-paid job somewhere so they can 'fit in' to society, rather than someone looking for any skills they have that would allow them to specialise, to be fantastic in a particular field of work. If Einstein had gone through a modern school system, I do wonder if he'd have ended up on the checkouts at the local hypermarket rather than solving the puzzles of the universe. If Leonardo da Vinci had gone through a local comprehensive, would he have ended up being a painter and decorator's apprentice, applying a coat of magnolia to office blocks?

We can concentrate too much on 'what people with an ASD can't do', and spend all our time making them into what society wants them to be (a socially graceful individual) and forget to even consider that there are often (not always) abilities in there that are worth developng, nurturing, building upon.

[cyberseraphim]

''So, what would be the defining characteristic that is shared by all people with ASD''

I'm not sure if there is one other than marked impairments in communication and social understanding - but that can manifest in a variety of ways. DS1 now lets the cat if he sees her waiting at the back door. Is he developing a sense of empathy/being attentive to others needs ? Or is just to have fun chasing her around?

[lingle]

sc134. If you search for posts by jimjamshaslefttheyurt, who is a full time researcher into autism and the parent of a son with severe autism, you will find some interesting thoughts. She has name-changed recently so the posts aren't very recent - around November I think. Amber may be able to track down the link. Bullet123 (who also has ASD) also contributed to some very very interesting threads.

I've been applying my mind to the questions you ask for the last 9 months or so. I haven't found a coherent explanation yet. The mumsnet threads by the people I mention above are the best thing I've read. They distinguish between possible biological "causes" ie sensory differences and mere effects ie the famous "traits".

Unfortunately, lots of the literature describes ASD as if it were tonsillitus or influenza -this confuses cause with symptom.

[amber32002]

I still wish Jimjams hadn't namechanged and gone under cover. I miss her. And I agree that her, Bullet123 etc are excellent. No idea which thread you mean me to try to look for, though, lingle.

[lingle]

www.mumsnet.com/Talk?topicid=special_needs&threadid=642931-quot-we-39-re-all-on-the-spectrum-quot-wh at#13088397

have a look at this sc134.

Also some threads started by Amber called "A day in the life of Amber" (and it has a sequel, I believe).

[amber32002]

It does. Something like "another day in the life of Amber" (imaginative, eh )

www.mumsnet.com/Talk/1373/694570

[sc134]

Thank you, I'm amazed by how much I'm learning after less than a week on MN! I don't know what will happen with DS's dx (and probably won't know for a while, by the sound of things), but independently from that, I'm glad I'm getting some education about the human mind in all its variety of forms