George and Sam

[Janh]

Another fab piece by Charlotte Moore .

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Hi Socci. They thought George was OK initially because he was so able-but he had signs that someone clued up would have recognised right from the beginning. Sam was a bit different- he regressed - apparently after normal(ish) development. I think he's very like ds1- early very subtle signs followed by a period of regression to severe autism.

Agree totally with you RnB - ABA is a very effective teaching technique, but doesn;t take away the autism. Also interesting that those who recover totally do so anyway, it does seem as if something kicks in for them doesn't it?

RnB I find it very interesting that you describe your son has HFA but severe as I have a friend who is in exactly the same postion. He is a very complex little chap and I think people find it hard to understand that he is so able but at the same time completly driven by his autism.
On the other hand my ds is not classed as HFA but his autism is moderate and in some aspects I would even say mild, however his langauge and learning needs mean he is not hfa.

Does recovery mean recovery from severe autism? I notice that where I live the diagnosis of autistic spectrum is widely given and many of these children only have a few very mild traits. For example my friends son has recently received an asd dx but the team involved said his asd would only be apparent to trained professionals with asd experience. He does not have the triad which I thought had to be present for a dx. His mum has been told that he will live a normal life, no intervention needed. Surely then for the purpose of stats he as an adult would be considered cured?

I don't believe you can change a childs potential, you can only help them achieve their personal best. At three my ds seemed severe but he has made good progress,(in his own way) I agree that at two or three it is very hard to predict the future.

That sounds weird maddiemo- and to me a little inappropriate (devalues the dx, which mainly affects those who are hf but with signifiicant problems iyswim). The triad should be present, otherwiise what's the bloody point and do we all start demanding help for our little quirks??? OOf course this is the same HA that said that ds1 was definitely NOT autistic

I think my ds sounds similar to RnB's. ALthough perhaps not- perhapps he's the other way. BIBIC assessed him as mild/moderate autistic, but he is severely disabled and certainly one of the most "complex" in the school. Ghosty met him last week and I think she was struck by how with it and interactive he was (and so clearly not learning disabled in the IQ sense of the word), and yet so unable to access anything normal (shops, family days out, play sessions, restaurants etc).

He's a bit like Roz Blackburn- she can only access activities aimed at the PMLD, even though she's soo able in many ways.

Know what you mean RnB, about Ben HF but severe too, I am even more sure Ben's diagnosis is correct, the fact that his language has developed shows his autism is severe enough to prevent him from being able to use it socially as well as his other difficulties. It will be so interesting to see the progress from RDI!! Jimjams, having worked with Ben your ds does sound similar to me,was his dx severe autism? I have often wondered the significance of a dx of autism as opposed to dx of asd?? Jimjams good to hear you are starting RDI, how is it going btw,we have just confirmed our consultants visit for dd and are so excited.

at 3 ds1 was dxed with mild/mod (CARS), but I think now he would be severe. But then he is with it and able to learn (if presented properly iykwim). His anxiety is a problem though. Agree with Socci about not really knowwing until older- that was what happened with us.

The thing I hate about autism in ds1's case is the limits it places. It's not that he's not hf or whatever, I hate the way that we can't go anywhere. We can now do walks on Dartmoor - (fingers crossed as he'll go through phases of refusing), but things like exit passes at theme parks, or events organised for SN are completely useless as he still can't access them. There doesn't seem to be anything aimed at his level. Maybe I need to take a leaf out of Roz Blackburn's book and start trying to acces PMLD stuff- but then there's still be open windows, doors etc wouldn't there?

I'm really hoping RDI will teach him to base his behaviour on those around him, so he stops running off etc/. we're doing it very much alone at the moment though

From reading the book I think there were early signs that Sam might be somewhere on the spectrum. CM's description of him at 2 was very similar to a description of ds2 - even down to them both developing muscles early on. Without his clothes on ds2 looks like a mini-bodybuilder, probably because he is constantly running, jumping and climbing.

Ds1's school report describes his general progress this year as "astounding" and "amazing". It really seems as though his brain is somehow re-wiring itself, if that makes sense. It's certainly not because of anything that we've done. He's a long way from being "cured" or "recovered" but for the first time I'm starting to feel positive about his future. The triad of impairments is still there but it's no longer as obvious as it once was. It gives me hope for ds2 who, despite being more sociable than ds was, somehow seems to be more autistic.

Coppertop, that's great about your ds1, brilliant .

The weird thing about Sam (in George & Sam) is that he regressed after he was diagnosed - he was dx-ed around age 4 I think. I've read the book about 3 times now - very painful read the first time, couldn't keep reading but couldn't put it down.

Hi, can someone tell me if there is an "average" time when asd kids might regress? or is it just different for each child? My own son, recently dx's asd has never "lost" anything, like words or abilities, he just didnt develop them in the first place.

He seems to be improving daily though in small ways only a mother would see. Do these children improve and then go downhill?

Also, i wonder if there is an epidemiological point here, in that maybe kids who are dx'd suddently get treated differently as if there is something "wrong" with them. Maybe some kids who might regress sense that and act accordingly.

Was reading Greenspans book again about this and he says the same thing that if your child is suddenly dx'd and you are depressed or anxious about it, you might not treat your child in the same exuberant manner as before the dx.

With J we go from massive highs where he is developing well and then hit massive lows where he regresses back faster than lightening.

He was non verbal until 4-5 and then speach just came so very quickly. By 8 he was almost age appropraite for his use of speech....now though all of a sudden its gone. We are back to his mumbled words that have no meaning, lots of miming and shrieking all day long.

On the plus side he has started to draw the most lovely pictures....they truely are amazing. Its almost as if his mind switches off from the ability to perform one task because he is using all of his brain power to perform another.

Well Socci, i didnt know that, i didnt know there was a diff of being born with it or developing. Very interesting - your take on a cover up regarding ASD, etc. I am absolutely convinced the increasing numbers are due to something in the way we ilve and have been living for some time. Must do some research on this one.

What is your take on particular triggers? Vaccs being one of course, but what do you think might be others?

I think about this a lot too - and have a list as long as my arm of possible suspects! Difficult birth, morphine etc after caesarean, antibiotics, mercury in tuna, vaccines, fillings, given cows milk formula by midwives on day he was born ........ it goes on and on!

I think it is probably a combination of genetic vulnerability and something in the environment triggering it. I would really really like to know so that if we decide to have another baby I can avoid the likely triggers.

Socci, i had a difficult time birthing my ds too. Had a homebirth planned but went wonky and ended up in a CS with the works. No autism in my family at all, not even suspected.

Lots of dental fillings though and a life time of eating crap. Also at birth baby got stuck for some time, actually had to push him back up the birth canal to carry out the cs. I dont know if this is common cause I only have had one birth but she was pushing for a good 10 minutes.

There is a BBC film planned about Jaqui Jackson

here

There have always been "2 types" of autism as far as I know.
Regressive, i.e. appears at a later stage and is characterised by loss of skills, and as I said on another thread, this has apparnetly stayed the same proportion of overall ASD numbers
Progressive (lovely word!), i.e. from birth, did not develop skills etc and lose them, never had them
I believe that the number of "progressive" cases are far greater than "regressive" but they don't get the same interest or publicity as the boring old bog standard ones!
Altough my son was certainly autistic from birth, and we have other people with ASD in the family, I have worried about DD being susceptible so have been careful about vacs, although she HAS had them, and we have worried ourselves to death about her development
There is no doubt that a genetic factor is at work in most cases, as Socci says, twin studies and family studies show that. To find out more about "trigger" theories I would look at NAAR in the USA which is a charity funding research, it is a serious organisation as far as I know and not a group of people with a theory. Not that I'm saying the latter are wrong, but you have to be able to prove a theory in a scientifically robust way and many of these theories don't hold up (yet). To assume that there is NO serious work being done or progress being made in understanding ASD and its causes is incorrect, it is going on and there is more and more but there may never be clear answers or anything that would help any of us before we have children.
I think a lot of people I know had difficult births with their ASD child (me included) but I'm not sure that there is evidence that it is a factor as there are many difficult births that do not result in ASD.

Socci- do you have autoimmunity in your family.

Alaso think its worth saying that autism is a very diverse condition- so there may be maany routes to it. (probably are).

Heritable characteristics have a genetic component and an environmental. A common example would be PKU (tested for at birth). Someone is born with a mutation in a gene which means that they can't process phenylalanine (an amino aciid) properly. They are "doomed" to a life of mental retardation- except they're not because they can avoid phenylalanine. In this case phenylalanine is the trigger.

A lot of different types of studies are showing that there are problems processing heavy metals in autistics. I do think this is the area that is most promising for giving a "cause"- but it still won't explain every case- perhaps not even the majority.