Is there really a recovery from asd/AS/autism???

[Blossomhill]

I was watching Oprah Winfrey with Jenny Mccarthy last weekend and I was so impressed with how well her ds had come on since all the therapies and dietary changes. Jenny described it that her ds was recovering. I am sceptical but also intrigued and was wondering if anyone has a similar story??

My dd is 8 and has Aspergers/Adhd. Thanks x

Fwiw, my oldest son is good friends with a boy in his class who is statemented with ADHD and has extra support at school. Both boys are nearly 14 years old. I've met the boy and know his parents quite well. His mother would not talk of a 'cure' AFAIK, but she gives me the impression he is getting better at being 'normal' - learning appropiate responses etc.

My son has been friends with him for nearly three years now. He used to have meltdowns in class (my son told me) but these have stopped and he is getting more and more involved in school life - ds1 was apparently his first ever NT friend but now he has quite a lot of others as well.

It varies so much though doesn't it? I could never for example write about ds1 that 'all he has is autism', when in his case that translates into what will be a need for 24 hour care for the rest of his life and an inability to access just about anything. At the moment simple things like the cinema, shoe shopping and going out for a pub lunch are unavailable to him because of his autism. People can accept him as much as they like, but he still wouldn't be able to access any of those things.

My friend's dd had chelation on the NHS. There can be a place for it (if a child has heavy metal toxicity- my friend's dd had extreme- 'should have been dead' - lead poisoning). Sometimes the 'anti' brigade misrepresent the dangers of things like chelation. For example much has been made on the blogs about the boy from the UK who died in America during chelation. He didn't die because of chelation, he died because the incorrect drug was given. It was a standard drugs cock up, not chelation itself. It was his last treatment and he had, apparently done very well on it up until then. Chelation isn't something I'd do without definite evidence of metal toxicity because it does have risks but I think there can be a place for it.

I am going to stick my neck out here and say that I never stop hoping for recovery for DS2. Not because he's unhappy or difficult to look after (he's neither) and not because I don't love him absolutely as he is, but because I think that life in the future will be so much easier for him if he can communicate and interact in similar ways to his peers.

My DS started to talk, to make better eye contact and to eat with a fork within a week of being diagnosed with autism. For us it was a 'placebo by proxy' effect as because we had the 'relief' of a diagnosis, we relaxed more and realised that actually there were many positive signs. I am sure that bio med can have a similar effect for parents who believe in it. Chelation is not clinically indicated for autism though I think some people exposed to nuclear waste have been treated this way ( they did not live natural lifespans which might raise questions about efficacy/or not?). Whilst it is true that the 'wrong' drug was administered to the ill fated boy, this does not excuse the clinic from moral responsibility for their acts. It has been proved beyond all scientific doubt that chelation cannot cure autism and anyone purporting to run a 'clinic' should know this

But I did buy a packet of Haliborange blackcurrant chews with Omega 3 today for DS1 as there is some credible evidence that DHA can aid concentration in all human brains, autistic or non autistic. OMG I've gone bio med

Yurt - I'm new to the sn boards so forgive me if this has been done to death - but do you get any respite care? I can imagine how hard it is to have family life if ds is unable to do the things you describe.

Have to say that I agree with yurt on the "all she has is autism" comment.
When I was at bibic and I asked whether dd's AS made her have mild asd. The answer was can you actually describe something that affects dd in the way it does as mild. Loads has been going on with dd lately but I don't like to post here but let's just say no, it is not mild!!!!
I see dd's asd as a barrier/wall between her and the real world as we know it. She so badly wants to be life everyone else but because of her autism she can't

I think it's that that really alters the way people feel about autism BH.

If it doesn;t interfere with your child doing what they want to do, you can kind of culturalise it. If it does it's much harder to see it as something to accept. You want to find ways to make it better. NOt necessarily to make it go away. I'm not that fussed about ds1's autism but I'm mighty pissed off that to date it's robbed him of having any sort of verbal exchange ever. He tries to talk all the time and since losing his first words hasn't managed it - almost 9 now. I find that pretty hard to accept for him tbh. It's not about not accepting the child, it's about not wanting to accept the limitations of the condition. Donna Williams has written lots about this, and thoughtfully imo. She calls it culture vs condition and distinguishes between those who have voluntary behaviour and those who don't.

nikos- we get direct payments from which we organise help. There is one childminder (who is wonderful) who has ds1. He goes on average for 6 hours 2 Sunday's a month. He went today and had a whale of a time. I chilled at home/visited a friend with the other kids, whilst dh worked. I also buy in an extra pair of hands for holidays so we can go for walks etc.

Will write more tomorrow, but have vommy ds2 so I need to go and sit with him. Wanted to write something about CAN and the person who started it (much misunderstood imo) but will do so tomorrow.

I'm not a fully signed up member of the 'autism acceptance' lobby. In many respects what they say is as irrational and illogical as anything said by people at the extremes of the bio/med argument. Yes, they are 'high functioning' but they have little or no understanding of what it is like to be 'lower communicating' or to be caring for a a 'lower communicating' child and I am sure many of their comments can come across as being misguided and lacking in understanding.

For myself and Ds1 there are some things I am happy with regarding us being on the spectrum and other things I am not happy with. I fully agree that it would be very insensitive for me to claim that my AS is the same as someone with severe autism. But, at the same time, I will not have someone tell me that there is something wrong with me just because I am different to them.

For me personally dd's adhd impacts far more on her life than her AS.

No parent's hope for their child should ever be diminished. hope can never be diminished regarding our children, autistic or not.

i fully expect my child to recover from autism, i have absolutely no proof to sustain that comment, but i do have hope, and we are doing all we can to balance him having a healthy, fun and exciting childhood and having a healthy body. one can't be done without the other.

I personally believe there is a "cure" for autism and i for one would be first in the queue should it ever be offered. Its not here yet. I dont know if that cure is going to be for children who are pre diagnosis and very young or if it will come in the form of a magic pill. I also believe that all things are possible. We know diddly squat about autism and anybody who says they do, is lying.

just like we know so little about the brain, its the same deal. the brain is plastic, the plasticity of the brain, its ability to be re-trained even after major damage is amazing.

the negativity we get "out there" about our children is often internalised. I dont feel there is anything intrinsically wonderful about my childs autism.

he was at the park today, wanting to converse with two children his own age. he ran up to them, stared at them, so wanting to talk and play, and he didnt know what to do. he lay on the ground instead and looked up at me. I cried as i picked him up. What do u say?

all the acceptance strategies in the world arent going to make my son a good playmate.

in my personal opinion, i believe autism is a metabolic disorder, never should have happened, the ground is about to open up and swallow tens of thousands more children into autism and the world is idly watching by.

My boy is not the boy he was, he has improved in his language and outlook - he has far to go. I accept him unconditionally for who he is, absolutely and utterly unconditionally, including his autism (whatever autism is by the way)

however, that will never ever stop me from trying to help him. There are no boundaries on my son whatsoever, and who he ends up being in the next year, 10 years and into adulthood will be shaped by me, love, understanding, acceptance of HIM, and hope. It will also be shaped by the energy i have to help him and the belief system i have about my own child and what I think he is capable of.

the acceptance gang (ND) in my opinion have a lot to answer for. they dont know what they are accepting, cause there is no 1 autism so what's to accept?

biomedical is not a crock. even though we have mostly done with it, i still think its the way forward to helping our children.

yesterday the american society of pediatrics announced that they are going to be working with Defeat Autism Now, the largest biomed group in the world, to help our children. Obviously the word is getting out that what has been offered our children to date, has not been working.

Did anybody watch the sonrise movie today on Sky (true movies?) it showed what it used to be like in the 70's to get the "state of the art" treatment for autism. Electric shocks, narcoleptic drugs, aversive and abusive behavioural "therapy" and worse.

we havent really come that far since the 70s where autism is concerned because i really dont think there is a concerted effort to figure it out.

our kids are written off after diagnosis.

i think raun kaufman, the subject of that movie is a testimony to what parents can and must do, if they want their child to have the best opportunity in life.

its up to the parents, no one else has the interest. Any parent who is looking for a pat on the back for recovering their child from autism isnt going to get it, not from other parents and certainly not from the medical establishment.

i personally have experience an almost "jealousy" from other others parents who have seen my child progress in the last year. before it was "oh, dear, how do you cope, perhaps he will get better". Now that he is talking, responding, playing, knows his numbers and all his alphabet and is starting to read, i dont hear a dickie bird from those parents (in our local group)

they dont want to know about our biomed work, they dont want to know about our sonrise work, and they dont want to hear about the 6 hrs a day we spend working with our boy. we took him out of school and he is doing fabulously. its all been down to us because we knew no one else was going to help. sure enough no one ever did. speech therapy was crap, OT was crap, the paed was horrendous and the school was unsuitable.

you can't win with autism. If you want to recover your child from autism, i suggest keeping it to yourself because what i have experienced at least in the very parochial part of the UK i live in, is that you have a major "belief system" problem to overcome.

we only concentrate on our own boy now. the only time i really talk to anybody about him is when i come to this website, which is pretty rare now.

Perhaps we should be looking more deeply at what has worked for those who claim a cure. In my limited experience I see improvements in my ds in direct relation to the interventions we use. And it does seem to be creating new pathways in his behaviour rather than just retraining his behaviour IYSWIM.
There also has to be some explanation why some children on the spectrum just show up as they are brought more into interaction with their peers i.e. it seems gradual whereas others seem to progress normally and then at 2-3 lose their language and go into their own world. The differences here seem so strong as to almost seem like two different conditions.
Totally fascinating the whole area.

There is an interview with my fave autism professor - He dx'd my son is he is a fascinating person and so interesting to listen to talking about autism. He gives his views on why loss of language may occur in some children.

www.lookingupautism.org/Articles/ChristopherGillberg.html

I doubt there is a cure. Even if a cure is found I doubt it will work for everyone on the autistic spectrum.

I think that you can move along the spectrum over a period of time. Also that some behaviours can be programmed - for example, if someone visits me, I know the right thing to do is offer them a cup of coffee/tea. I was watching Snow Cake last night, and in that film the person with autism had also learnt some social behaviours.

This movement along the spectrum I think could be two-way... and while people can improve, they can also regress.

For those of you who do ABA - do you think those techniques will work with an adult, or is it aimed at children?

It is an interesting question nannynick whether ABA would work with adults as well as children. I think it certainly works with men as I sometimes use it on my DH. For instance, if he does something that mildly annoys me, I know that my mild annoyance won't even register with him, so I up the ante and get very angry and very loud, so that behaviourally he learns next time that this particular thing got him a bad result! Adults use attention-seeking behaviour too, for which the ABA idea is to ignore or "put on extinction", and I certainly use that on some primadonna type adult women I know. I think you can learn certain new behaviour patterns at any age, but it is probably easier to change major behaviours when the person is a child.