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

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Amber I will say a prayer that his recovery is swift and you know where I am if you need anything at all. X

There is a fundamental difference between myself and Ds1 in that I hsve good understanding of language but struggle with expression (and it goes far beyond being shy) and he is very vocal and verbal but has got significant difficulties with understanding.

"some with perceived milder conditions" is not the same as "milder disabilities". The perception is wrong, not the level of need. I think you and Peachy are saying the same thing, Fio.

I also know of parents who've had to call the police or get medical help because of attacks from HFA and Asperger children. It's not just classic autism that can lead to violence.

Those with DS who marry and get jobs are not severely affected though. I know someone with DS who is taking a rather large number of GCSE's. She has DS but she's not severely affected, she functions very well. TBH though every person I have met with DS is functioning at a level way above ds1 (and anyone else with severe autism); And I think this is another common misunderstanding.

However I'm not arguing about the need for support at any level of disability. I'm not lining up HFA- severe. Or casting one against the other. Of course everyone should have their needs met. I am simply saying that those with severe autism are totally unrepresented both in the research literature and by the NAS. I'm not talking about support, I'm talking about representation and understanding of the nature of the condition. There is a huge amount known about the cognitive nature of HFA. There is next to nothing known about severe. Although lots of assumptions.

bullet mentioned movement problems. These play a very important role in severe autism- but are barely studied.

Yes that's true. And I suspect that many with LD's actually have problems with voluntary movement/sensory processing etc as well. But they're lumped in the 'don't do anything intersting' category A(long with severe autism)

Although I suppose my comments started with the NAS saying something incorrect iyswim. I'm sure there's rubbish out there said about all LD's though.

Mrs Turnip, This is a slight hijack refering back to you talking about how your DS1 understands nouns but not verbs, this interests me, I sometimes wonder if the nature of the language we use (ie. english) makes a difference to children with language difficulties (as is the case with dyslexia being less common in languages with more rational spelling); what i mean is the verb has no direct connection with the noun, ie walking uses your legs so could be called legging and driving in a car, carring etc. but in english the nouns and verbs usually have different roots. ( This kind of thing is a bit like some slang or toddler speak I suppose and I'm sure this is not a novel observation for SALT's and language experts but it has only just occurred to me! I can't help but wonder if a simpler spoken language would help with language skills like PECS does.
Being around children who experience the world in a different way really makes you stop and think about how everything works. I have found it very interesting reading your posts and it has encouraged me to observe my children in a slightly more scientific way!
Amber, I hope your husband feels stronger soon.

To be honest, I have little understanding of any word that isn't a thing or an action. I know which phrases to use when, through long experience, but it leads to some huge problems when asked to comment on theology,for example, as people may see from other threads I'm on. Or on emotions and relationships.

If you take the sentence "I have no understanding of any word that isn't a thing", I have to convert all of it to images.

"I" is easy. That's me. I know what I look like from picture and the mirror.
"have" is sort of easy because I can imagine me holding something.
"no understanding" is me guessing that this is the right thing to say here, because I don't know what an understanding looks like or acts like, so there's no picture of it in my mind. I can imagine a person being puzzled, perhaps.

"of any word" Well, I know what a word looks like. 'Of' and 'Any' aren't words that make sense to my brain.
"that isn't a thing" I know what 'things' look like, so that helps. 'That' and 'isn't' and 'a' are all irrelevant to me.

So over 40+ years I've learned thousands and thousands of phrases and ways to link words I can 'see' to words people expect to be there.

Blimey Silverfrog, you've got me thinking now.

"dd1 is unable to communicate effectively at school. she is not "choosing" not to speak, she is unable to. She loses the ability, as copiing with everything else takes up too much of her. so to speak."

Before I had ds I would have said there is no autism whatsoever in our family, but now I look back on how I was as a child and see lots of traits, most of which were put down to terrible shyness (except for my food issues, obv I was 'fussy'!). One of them was that I didn't speak at all at school until I was junior school age, although I did at home and was considered 'bright'. I've never been able to explain why that was, I just remember wanting to speak and being unable. I think you may have just explained it for me!

Interesting ally -I think in ds1's case some of his problems with verbs are perceptual. So because he came so late to imitation watching someone else 'do' something would have been meaningless in that it would have had no relevance to him. I know that imitation is essential to learning a language, and I think cognitively perhaps you can't understand action until you can imitate, I wonder if you can even perceive it with any meaning before you understand imitation?

it is at this stage my brain starts to explode, because although I've watched the changes since ds1 learned to imitate recently I can't really comprehend or imagine not understanding that.

I think I'm understanding you now Mrsturnip, perception is fascinating, peoples differing perceptions can be such a barrier to understanding; on a very minor level my bother is colourblind (yet another quirk that runs in my family) and it is really weird talking to him about colours he can't distinguish

It will also affect development. So for example Tito seems to have spent his whole life with sound cutting out every sense. I seem to remember him also saying he can't process something as a whole but I'd have to re-read that. Lucy Blackman writes beautifully about her perceptual differences. I wondered why ds1 touched everything until I read her description of being unable to see something until she touched it when she was younger. I also never understood why a pleasant family walk would turn into a screaming refusal to walk a step further until I read her description of totally losing her sense of her body in space walking under trees in bright sunlight (the screaming refusals always took place under trees- I hadn't noticed). I knew ds1 had difficulties with depth perception - I had no understanding of how that could have a profound effect on everything until I read her book.

I also think not being able to imitate (very common in profound autism) has an effect that's very hard for those us who haven't experiences it to understand. I can't imagine watching someone climbing for example or dancing and not understanding that I could get up and do the same if I wanted to. Yet, ds1 was in that position for nearly 8 years. Whatever anyone else did around him had no meaning in relation to him.

many children have benenfited and been cured through the biomedical approach. the next dan conderence is on march 13th 14th at bournemouth. to understand a bit more about it please log into the www.treatingautism.co.uk site and click on why biomedical and events. there will be many doctors at the conference talking about how an auto immune disorder of the brain breaks down with foods such as wheat and diary and corn, and chemicals and environments can cause it al well, triggers of gentic recurrences can cause it as well. the doctor who began it is was dr rimland at www.autism.com at the autism research institiute in amercica, it was through them that we are lucky enough to have dan doctors and nutritionalists working to help metime by caudwell childre.com and i have seen lots of improvements in children on the dan protocol including my owm. they nearly all have metal toxins which will need to be chelated nutritionally or medically which ever you choose, environmental factors that cause it to continue are aluminium foil for cooking tap water ceramic plates and chemical washingpowderd and household cleaners. it is best to avoid all this, i.e. cook with pyrex casserole dishes and pots and give with poyres or non toxic plastic plates, use filter or bottled water use organic food where possible and if not definately free range meat,remove all processed additive and coloured and e number foods do a colon cleanse tremove excess stools and above all begin a gluten and casein free diet and corn free as well, for best results some children need to remove starch and go ontot the specific carbohydrate diet www.pecanbread.com. the mum who wrote the article is a freind os someone i know from treating autism it is easy to be negative about stories in the paper but cleaning up the diet is imperative for autistic people then you can im plement aba sonrise teeach program and slt lessons easily as their brain starts to clear its self of the toxins. There is another website for allergy induced autism which is caused by not being able to break down the protein in certain foods, these can be managed effectively with enzymes from www.mandymart.com which is a brulliant site but it's better to remove the food generally wheat corn and diary sometimes soy. please re think the dan protocol, my son is getting better.....

sorry about all the bad spelling....

thanks for the further info pushkar. can I ask a quick question abou the toxins - how do these get diagnosed? do the dan docs do blood tests, or is it from the kids symptoms?

Amber - very interesting post about how you use language - I suspect that DS processes language in that way (he was severely delayed at 3, is now much less delayed but still has problems, particularly conversationally). He couldn't really spontaneously generate sentences until private SALT had the inspiration of using PECs with him for each word - "I" + "want+ "more" + "juice". Can I ask - did you have some degree of language delay?

Will answer on the 'another day in the life of' thread if that's ok...

yes of course.

Ds1 is actually the opposite when it comes to imitation in that he can (and often does) copy everything he sees without understanding what's important. So if he repeats back what someone says and they cough as part of their sentence he will repeat back the cough as well as the words. If they fold their arms, Ds1 does the same. If someone is doing a dance routine and they scratch their nose, Ds1 dutifully follows suit with the scratching. In one way it helps his learnign a lot as he can copy. But because he can't determine what is relevant to copy and what isn't it can cause difficulties for him.
What he doesn't do - and what I very rarely do or did myself - is what, for want of a better phrase, I'll call more abstract imitation. Ds1 won't pester for my latest toy because all his friends are pestering. He won't rush to join in with the latest playground craze in order to fit in. If he wants to join in with the game (his playing with other children is basically just running round after them at this stage, no pretend play for example) then he will do so because it suits him at the time. I was the same and even today I will not join a group of other people, be it previously at work or perhaps collecting Ds2 from playgroup. Both Ds1 and I have got quite strong independant streaks in us. Unlike those with profound autism I know that I could dance if I wanted to, but if I do (rarely) then it's because I like the music, not so I can join in with everyone. It's said that most children just want to fit in, to be the same as everyone else. Well, that may be true for most, but it never occurred to me to have to fit in, to be seen as part of a group. The concept that others (usually teenagers) may pretend to like a particular group, or person, simply to be seen as popular is something which I can now grasp in theory, but in reality still struggle with it. I have never had any concept of wanting to smoke or drink in order to fit in with others, for example.
I think that visual and motor imitation is one precursor to abstract imitation.
Ds2, who we are unsure of now, but hopefully the assessment will clear things up one way or another, has got very poor motor imitation and the concept of "hand over hand" is very familiar to us with him. I do think there is a strong possibility he has inherited my difficulties with reactions and initiating.

ds1 has moved onto that bullet to an extent. So if someone claps on tv he claps. If I scratch my nose quite often he does. But cognitively he has so much more understanding of how the world around him relates to him now it does make things easier.

For example I don't think he would have surfed without imitation, because us trying to get him on the sea and onto a board would have been meaningless to him. In fact as soon as he saw the surfboard and he understood that he was going on it he was trying to get out there.

Total

I think DAn Drs do a mixture of tests looking for toxins including hair analysis, urine and fecal tests.
There is a whole arguement about children with ASD sometimes being 'non-excretors' so they will sometimes give a mild chelating agent to push toxins which can be stored.

A DAN Doctor may be able to organise the tests themselves or the may send the child to a tesing lab to do it for them.

Notwithstanding my general dimwittedness about some ofthis stuff that is what I broadly understand happens

thanks for the info about DAN pagwatch.

Hi, joining this discussion late but my son has improved with biomedical intervention too. The problem with autism is that it is diagnosed on behaviours alone and noone looks at, understands or cares about what is driving the behaviours.