Autism - Seen today's Daily Mirror?

[jg3kids]

Hi all

you may be interested in this article. Nina talks about doing biomed with her twins. We are doing biomed too. Very interesting!

tinyurl.com/cz4tx3

j
x

Exactly!!!

Actually some do, but clinicians (and the NAS!) don't read their work

I've always, as a matter of course and long before I knew that Ds1 was on the spectrum, been reasonably careful with the lads diet, making sure that artificial flavours, colours, aspartame etc were kept to a minimum as much as possible and that the majority of meals are made from scratch. And I tend to shy away from cleaning products in favour of hot water, vinegar and lemon juice. But apart from that we don't employ a biomedical procedure as reactions to food are either absent or very rare with our lads.

Our experience is that autism isn't lifelong. Our ds had early-onset autism (classic autism?) and is now NT. So for him autism wasn't lifelong.

How fantastic is that? Well done Sandysandysandy.

Sandysandysandy, that's very interesting. When you put (Classic autism?) in brackets with a question mark, does that mean you're not sure what the diagnosis originally was? How long was it between the original diagnosis and it being removed? What age was he?

What continues to interest the professionals is whether they are seeing 'recovery' or the phenomenon that occurs for most (not all) people on the Spectrum naturally - in other words that the outwards behaviours cease and it becomes an internal and invisible disability/different-experience for us. It can look exactly like we're NT, except that we aren't. How it feels to us continues to be very, very different to the world NT people encounter.

I'd like to know more about how the specialists decide what is cured, and what has become invisible to standard testing. It's something they're honest enough to admit they can't solve for the adults with an ASD. Most of them are very reluctant to diagnose any adult with an ASD because in most cases the behaviours are no longer visible in any public setting, so they have to use extensive testing and questions of family and friends who knew us as children etc. Instead, very often the adults are misdiagnosed with schizophrenia, OCD, anorexia, etc.

Anyone know how the specialists tell which child is cured, and which is no longer showing outward signs?

Hi Amber,

He was just diagnosed as autistic. We call it early onset because it started early. Maybe some would call it classic autism? Hence the question mark.

There were approximately 3 years between diagnoses. He was diagnosed belatedly at 2 and rediagnosed at nearly 5. We learnt to look somewhat NT at an older age than that.
We did not enjoy playgroup, noisy chaotic places etc. We still don't like wackywarehouse - he loves it - like fingers down a blackboard for us but wonderful to see him having fun.

What can your child do now that you feel is definitively not autistic ? Or do you feel that he was wrongly diagnosed ?

I have known some students who had a dx of schizophrenia but there were many cross overs with Aspergers in their behaviour. Also many case studies of patients with schizophrenia showed traits of autism in childhood - although the parents' recollections may be influenced by the knowledge of later events and you can find oddities in any child.

He can tolerate the presence of other people. He can tolerate artificial lighting. He can talk. He can tolerate touch.

He could build with blocks before but we couldn't take him places, touch him or allow strangers to come near/speak to us etc. There wasn't anything much he could do before, it feels like there isn't anything much we can't do now.

There is a huge variation in the abilities, preferences etc of autistic people. What is it that they all can't do? Would it be theory of mind maybe? He has theory of mind.
Best wishes

I'm glad he's made so much progress. It does make a life a lot easier ! My DS has changed out of all recognition since he was dxd too.

What it is we all can't do? We all can't use body language, tone of voice and eye contact in subtle ways to direct attention and signal friendship or turn-taking. We all can't imagine more than one person at once or find information in our brains about people in anything like as quick a time as NT people can. We all find some sensory things distracting, even if we've learned to be polite about it.

I have some theory of mind, but ask me to understand the motivations of three characters on the tele in some soap opera and you might as well be asking me to translate greek into ancient Egyptian. No idea at all.

But there again, I can use my additional abilities to do and to experience things you can't, and I wouldn't want to lose those for all the money in all the world. For me, a 'cure' sounds terrifying because I would lose that which I most value. Being helped to have the best possible choices, the most opportunities, yes. But a cure, no. That's my view, for me. I'm not saying I am applying that to every person. Some may want a cure for themselves.

Hi ladies,

I just wondered where and why we keep all using the word 'cure'?
I spoke to someone who spoke to Nina (the mum in the original article .. gawd it seems like it was ages ago!) and they said she never talked of cure for her twins...
I don't know... I know some people speak of recovery, some of helping their child be the best they can be. For me personally, I am treating medical conditions for my ds and it does seem to be helping some stuff that the gp said was 'just his autism' like banging his hands, and having diarrhoea all the time! As i've said before his sleeping's better too.
It's interesting what you say Amber, because my boy has started doing things that the teachers and specialist who dx him said he wouldn't do... follow my eye gaze, picking up on nonverbal and gestures. For e.g today I was struggling to get us all out of the house on time and I knocked some coats off the peg. I was already wrapped up and did a kind of mental steeling myself to bend down and pick them up, i kind of 'huffed' but before I could move he looked up at me, bent down and handed me a coat! I took it fro mhim and he handed me another one! this may not sound like much but for us it was huge!! BTW he is still non verbal.

Anyways, just thought I'd share a magic moment!

J
x

Jg3kids, brilliant about your son and the coats. It's the small things that really make a difference, I found.

Why do we use the word 'cure'? Because it's a word used a lot by the companies and groups who are promoting particular products for parents who want their child to be the same as other children. If you google those two words - autism cure - you get one and a half million hits (!)

What I found really interesting for this debate was the information from the top autism brain scientist, who told us that babies' brains are nearly complete when they're only about 20+ weeks old in the womb. Some bits build themselves before week 13, so that's often before mum even knows she's pregnant. When children/adults with autism have died, they've sometimes been able to look at how the brain was built and they've noticed it's built totally differently from other brains.

Imagine your brain is like an onion (heck, I sound like Shrek!). It has layers. When it's building, it starts with the middle bits, and then sends cells up to build the next layer round those bit, then the next one, then the next one, then the next one. Each layer does a different thing and has its own sort of cells linked in its own sort of way. Layers, like an onion. Well, that's what happens in most brains anyway.

In ours, from what they're seeing, the brain cells don't stop moving when they're supposed to. So the ones meant for the middle layers just keep going to the top, etc. And the bits that are supposed to be a neat layer aren't. They're all sorts of different shapes and linked bits. This is why we can sometimes be amazing at putting together information you don't expect. We link up bits in our brain that you don't.

When we look at faces, our brains don't use the same bit to see them as you do. That ultra-fast 'people-spotting-bit' in our brains is used for our favourite hobby, not for people. We're fantastic at spotting the tiny differences between (say) train 1 and train 2, but can't tell the difference between Auntie Doris from Auntie Jo because our brains don't use the same bit, the same filing cabinet for people-information. So, we can't identify faces as fast as you can, but we can tell if a bridge is about to fall down because we can see the tiny, tiny engineering details that you'd miss completely. Your brain is so busy looking for people that it's using the slower bits for details like engineering. Ours looks for the details first, and people afterwards.

Most interestingly, they've just realised that the brains of people with an ASD keep changing not just in childhood, but right through life to 30s and 40s+, so even if you try to straighten it out somehow at age 5, you'd probably find it would unstraighten itself later on and you'd have to do something else to put it back as it was. It doesn't want to be straight in neat layers. It wants to be an ASD brain. Somehow that's its building instructions, and they're built in from the very beginning of life.

Really, really interesting stuff. Much more research to be done.

I'm not sure it wants to be an autism brain. I prefer the philosophy behind Floortime which is that challenges (such as sensory-perceptual, perhaps contributed to by biomedical issues) prevent access to co-regulated interactions. Without that it's difficult to develop along an NT path. In some cases these sensory-perceptual challenges can be over come- in some cases they can't. But if you can do something to help with those sensory-perceptual challenges then the individual is going to have an easier time of it - whether or not they're 'cured'.

Am reading horse boy at the moment which makes a very interesting distinction between 'cure' and 'healing'. The author went to see Temple Grandin to talk to her about these healing ceremonies and she said the worst thing anyone can do is to do nothing.

Personally I couldn't give a stuff how autistic my child is, but if he can learn to inhibit responses enough to be able to walk down a street, if he can learn to control movements enough to be able to speak, then he would have a lot more choices than he has now and would have more control over his own life.

With excellent timing Donna Williams (again) sent a very interesting email to her email group this week (well worth singing up to). It's on my other computer but she distinguished between curists, culutralists and moderates. I'm would plade myself well within with the moderates- will do whatever needs to be done to make life more comfortable for my son and to give him the skills to be able to make his own choices as much as possible in the future, am not interested in cure (for him not remotely realistic anyway), and find the whole concept of whether its possible or not a bit odd anyway- autism is a whole bunch of different conditions, not one thing, so presumably it might be realistic for some and not for others.

MrsT, yes, I see what you mean, but I was particularly interested in the findingsthat they're seeing big structural differences in the brain in those with an ASD, and noticing that different parts of the brain are doing different jobs to those of other people. I suspect the sensory challenges relate strongly to this, because if a bit of the brain is supposed to be 'in the background' but it ends up being centre-stage, then it'll be much more dominant. Maybe that's why the sensory stuff is so much 'louder' for us?

If every ASD brain uses different bits to control different things (which is what they're seeing in the new scans), the first thing would be to identify which bits are being used by a particular person. And then tailor any therapies to help that person practise really useful tasks to help the brain get better at them. But it wouldn't change the way the brain is built in the first place.

All we can do is the equivalent of using the wrong tool for the wrong job, but making it fairly competent at it anyway.

But if we find the bits that are wired in for super-speed and train those to be better, I wonder what would happen?

What is interesting is that at the moment it hardwires the best, fastest bit of the brain for our specialist subjects rather than for people-watching. It points to the theory that those with an ASD brain do have an evolutionary function: I suspect many (not all) of us serve a group very well by spotting tiny dangers that others wouldn't - being the early-warning system, the detail-merchants. But sometimes the design goes too far and makes it impossible for us to be of that use to the group without intervention of some kind. All really interesting. Thanks for the tip re Donna Williams - will have a look.

Yes but I think the evidence is that those ASD pathways are laid down during infancy - in part because sensory-perceptual challenges prevent access to back and forth interaction.

For example Gernsbacher (very sympathetic to autism) revisisted some of the work on eye gaze. It has been shown that when individuals with autism look at photographs of faces they show reduced activation in the fusiform gyrus. This was taken as support for different modules in the brain. When Gernsbacher and others revisited this they found that the individuals with autism were averting their eye gaze when photogrpahs were shown with eyes facing forwards, but not when shown photographs of eyes averted. So the reduction in activation of the fusiform gyrus was because of the strategy being employed (averting eyes) to minimise stress. The primary difference here turned out not to be a different way of processing faces, but rather sensory overarousal to eye gaze.

Most of the findings are currently interpreted within the framework/given that autistic brains are different. Yes there are some differences in terms over over-connectivity (which would give sensory-perceptual differences) but the same bits may well be doing the same job - just with different inputs.

I like Matthew Belmontes (2007) intepretation which is:
'much of autism's 'abnormal psychology' arises not directly from abnormal neurobiology but rather from the interaction of a normal human mind with an abnormal perceptual and cognitive environment'

It reminds me of Annabe Stehli's comment when her dd was more or less 'cured'following AIT which was that Georgie had be 'crazed not crazy'.

jg - The coat example is lovely - ASD children do pick up on a lot more than than they are given credit for. I am surprised that any specialist would make a prediction like that about an autistic child, but as we all know, not all 'experts', are as expert as would like them to be. I think the overall picture is that a minority of ASD children make significant progress to the extent that they blend with NT and also, a minority make very little progress because of the underlying severity of their condition. However the broad middle range of autism contains a very large number of children who will make progress due to developmental maturation and to educational intervention tailored to their needs. It is important that parents consider (at the time of dx) not just worst case and best case scenarios, but probable scenarios. Saying that 'product x' will cure autism tends to be based on the false hypothesis that autistic children have no developmental process and that any change (even presumably getting taller) can be attributed to 'product x'.

I don't think many parents use biomed like that though. IN fact every parent I know using biomed is using a specialist education programme as well. It's surely most commonly used as part of a package of intervention?

I was interested because my son has started stealing gluten which has led to an increase in hard headbanging at home. I wondered whether it was because of the gluten, then thought I would check with school. Yes he's headbanging a lot there too - never really done it much there. So I now need to make the whole house gluten free (not that easy with 2 other kids) or try enzymes or something. I know lots of people like me who would use biomed to help physical conditions e.g bowels, headbanging, and other interventions to help learning etc.

MrsT, that links in with the findings on the amygdala, I guess, which 'overfires' when those of us with an ASD look at someone's eyes directly.

Putting the sets of thoughts together, if I look at someone's eyes, the amygdala would send a message to what it hopes is the people-filing-cabinet to say "who's this, are they a threat", and soon realise that instead of info on people, it's filled with horses or statistics or something. No clue still whether person X is a threat or not, so the threat signal keeps running whilst the brain tests out all sorts of bits of it to see which bit's got the info on Person X. Result - brain is still thinking that person is a threat, which is stressful, which means we're desperate to get away from them.

I get that instinct all the time. Making eye contact is something I'm trained to do, but my every instinct when looking into someone new's eyes is to say "aarggh! Scary person! Run like mad!" and I have to fight that instinct for some time.

If the brain has a plasticity that extends far longer than that of other individuals, it is quite possible that it would lend itself to retraining, but also to further damage if the individual is trained wrongly or exposed wrongly to stimuli. Again, the research showing possible damage to the amygdala from overexposure to social situations may reflect this.

Really, really interesting stuff.

The bits on language were fascinating too:

They were also looking at use of language, he said. If you say the word "Bank", what normally comes to mind? It can mean bank with money in, or bank of a river, for example. Most people would say the sort with money in.

NT people can see two sentences like these...

He walked along the bank
He went into the bank

...and guess from the words before 'bank' which 'bank' it is.

Our brains apparently never learn that trick. We always pick the most-common-meaning for the word first, then struggle to think what else it could be. No link back to the rest of the sentence. Walking along a bank full of money is a pretty strange image, but it's what my brain sees straight away.

I wonder which bit of the brain gets that wrong?

I have found my own autism very variable over the years. For example, there was a big decrease during puberty then a couple of ups and downs coinciding with changes in health. When I have been well, I have been less autistic.

I've been treating myself 3 years and my adult brain has changed. Generally, I like the improvements very much, I just need to work a bit at concentrating sometimes (where before I didn't) .... and reverse parking doesn't seem as easy anymore.

Regarding the word "bank" I'd think of both if I just heard the word in isolation, then would spend ages thinking about the words and images. Followed by thinking of all the words that rhymed with "bank". Then how long the word was. But if I heard it in a sentence I'd pick up the right context.
I have no intention of changing most things about myself. I've learned enough social skills to be (I hope) polite and considerate, I find my own way of doing things and the people I care about accept me. I'd like to be more verbally expressive and initiate more, but the rest of me can stay as it is.

sandysandy- Lucy Blackman says in her book that she always becomes worse when mould levels are high and her allergies flare up. She does seem to vary with the seasons. lol @ reverse parking getting harder.