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

I've seen that one too.
I was at her saying he was 'recovering'.
To me it's like diabetes or Crohn's disease etc. You can do all you can to make life better/easier but it'll never go away. You'll never be cured.
That's what I tell myself anyway.

I don;t think that there is a cure, in as much as I don't think that they will ever be 'NT'. But I do think that they can learn coping stratgies for interacting with the NT world.

Nope. They don't recover. They learn.

They'll always be who they are, they just learn what is expected. Like potty training. You don't recover from needing to wear nappies, you learn when you need the loo.

don't know which programme you mean as i didn't see it.

i think recovery is not the right word.

I think that with good therapy and support you can help some of the more difficult aspects of asd but you certainly don't sure the autism itself,. you simply make it easier to live with.

I knew others could put it better than me.

Here's part of the show.

I agree with all of you but as always looking for a miracle

TBH I think it depends.
My DS was hugely regressive and his autism was definately made worse by his eating gluten and casein.
Once we withdrew that it was a genuine 'fog clearing' kind of thing - potty training within a few days and talking post supplements.
For many of these improvements he was having no kind of therapy at all so I know what was causing the reaction.
But as mys DS's ASD is linked to his vaccines and his gut I think he is different from other 'kinds' of ASD IYSWIM.
He remains pretty severe but is genuinely a different child and many ofthe skills he has regained are to do with imagination, emotion and empathy - so all the classic no no's for his diagnosis .
All a bit strange really.
But what I am saying is I think it depends on the kid and the antecedents of their issues.

rather than seeking a holy grail of recovery - love Hecate's definition and comment about the potty training! - what about reading the websites/books by people like Donna Williams and Temple Grandin, to see how successful these ladies are, despite (or to an extent could you say because of??) being significantly affected by ASD.

I find that often claim when their children are recovered its according to their own criteria which aren't the same as the medical ones used to diagnosed. I have heard of children who have had their diagnosis removed though but usually have some "odd" characteristics.

For me Im not looking for a cure but would like to get Ds health issues under control and give him the best tools possible to cope in life. I dont believe he will ever be NT.

FWIW
I am not chasing a holy grail of recovery.
Not only were gluten and casin affecting my sons beahviour, they were making him ill with permanently sore stomach and associated behaviours including self harm.
The supplements that helped his speech are supplements he needed to keep him healthy.
As I get him healthier he just seems to be less affected by his ASD behaviours.
And that is a good thing because, as i have posted before, he was destined for residential care whilst still a small child. Making him less affected has enabled us to remain as a family - and kept my lovely boy at home with me.
I have read Temple Grandin and Donna Williams and I love every inch of my son including all the bits that are ASD. But he is not Temple Grandin. And the bits of him, which were called ASD when he was diagnosed, which have subsequently gone, I cannot miss because they hurt him and made him unhappy.
I do however erecoil somewhat at those who sweep their children into all sorts of therapies and maonitor progress rather than letting their child have a childhood. I think it is about degree and about letting your child be a child.
As usual , I think it depends in the child and their needs

Pagwatch - I am very sorry if my post was unthinking and crass, I really didn't mean to offend. I was particularly flagging up those names because of Blossomhill's DD's circumstances (though I have never met her, me and Bloss have chatted quite a bit on MSN over the years), not as a blanket suggestion to all with kids with ASD. And I have absolutely no beef with dietary remedies - indeed I have minimised DS's milk drinks, and there has been a huge improvement in his stools, and a small improvement in his alertness.

no total - no probs at all !
Re-reading my post I can see it looks defensive but not at all miffed. Sorry it read like that
I think it is a really interesting issue actually.
I know a couple who have really 'chased' recovery and their boy seems to be regarded as a sequence of symptoms rather than a little boy. I think it can be a difficult balancing act and books promoting some brave mother who persued 'recovery' can make us who just love our kids feel a bit disconnected.
I remember reading Let Me Here Your Voice early on and just thinking 'christ, do I have to become that woman because I am not organzed enough to make him put his pants on just now'.
We get the balance ok I think but it is hard not to be guilted into pushing.

BTW don't you just love how we all are so knowledgeable about our kids stools

Hi, I tried GFCF and my ds refused to eat anything. He got worse, his symptoms and his lethargy.
I don't know what the answers are for my ds, I just have to try everything though until I can help him. At the moment I am trying a mish-mash of behavioural therapies, because I can't afford ABA at the moment. I am just reading about it, trying to get information, and then applying it. My ds does seem to respond to it quite well. However I have noticed that some of his behaviours seem to have worsened, and his symptoms are more obvious. I think there is only so much you can do with therapy, and you have to help your child achieve as much as they can within their own limits. I have hope that my ds will grow up to be a functioning adult, but I don't think he will stop being autistic.
I agree with Pagwatch, every child should be treated according to his needs.

I also don't think there is a cure, but if you met my DSD and we lived in America and went on the Oprah show, I think they would call her "cured". We in UK would just say she has learned to mask her autism so well that it now only shows in very slight conversational oddities or misunderstanding of social nuance - for instance, she did not know to put on a sad face at a recent family funeral, and was laughing and joking at the graveside. But if you met her with me in town today, you would think she was a normal kid or (as her big sister so charmingly put it) you might think she's slightly eccentric but basically normally functioning. Yet when I met her at 5 she was very definitely autistic, used to rock back and forth and make a crooning sound, watch Pingu endlessley, obsess about escalators, throw mammoth tantrums, still in nappies etc etc. She did not have any particular therapies but she did go to mainstream throughout (with a shadow) and I think her language was always fairly good. She is now in a mainstream secondary, with no shadow, and is top of her class in Science and Mandarin. She is my DS's half sister, so here's hoping his autism also goes that way. Myself, I think she probably started off with HFA and decent speech, and that probably helps, and then peer pressure kicks in and as a girl she wants to look the same as other girls her age, dress the same and have a mobile phone etc, so the superficial stuff makes her seem just like everyone else.

My parents can only accept my DS as a child who will recover from autism - although the means hasn't been specified. I can be guilty too of getting excited if there is a minor breakthrough and thinking 'Oh Good, he is getting better,'' I think some ASD children can mature through autism better than others although I agree constantly talking about HFA adults is not helpful. The theory about GF diet has been around for a while now so the feeling seems to be in the USA that J McC is a 'Jenny Come Lately' selling an old idea . They are always going on about her on the US site 'Autism Speaks' where there are always intense arguments going on too. If I didn't have an ASD child, I wouldn't mind joining in but I don't have the time.

cyber - apologies for offending with references to HF adults, I mentioned them because I know that the OPs daughter is very high functioning, so at the time I thought it didn't seem inappropriate.

Some children do fully "recover".

Georgie Stehl (spelling???) for example who had severe autism caused by extreme sound sensitivity. For her that was the key and sorting that out meant that she was able to function entirely 'normally' My friend met someone who didn't talk until he was 13 and he was for all intent and purposes recovered. She had a beer with him in the pub.

It depends what's causing the 'symptoms'. IN Georgie Stehl's case it was quite simple in some ways to treat her (although it took many years to find the problem) because she only had one sense out of synch so to speak. Usually the sensory and/or motor problems are more complex and intertwined.

In ds1's case gluten makes him headbang. I'm more than happy to remove that and not have him headbang. I've been told it's unlikely he'll speak (because he doesn't have many consonants only vowels) and so we're looking at ways of getting him communicating fluently (if slowly) by typing. Most people think I'm mad, but some people just like him have managed it and it would be life changing for him if he could. Wouldn't remotely cure his autism, but I do believe in working with it and around it and trying to give him ways to cope with it so that he can access more of this world. His life is very limited at the moment and it would be wonderful for him if that could change.

Donna Williams is always moaning about Temple Grandin though She hates the blanket 'thinking in pictures' thing that has spread via Temple

No need to worry - I am not easily offended although like you I am sometimes hesitant about what I type in case it upsets someone esp. as when you have an ASD child, you are near the end of your tether most of the time anyway. The Georgie case is certainly very interesting but then again my brother is HFA, has a degree, wife and job has not recovered and would be very offended by the idea that there is something wrong with him even although what is 'wrong' would be very obvious to you or I. But there we go, HFA again which is can turn into another kind of Holy Grail if you are not careful. I understand optimism , I hope all the time that DS will grow up to achieve what my brother has achieved but it's not inevitable.

Catherine Maurice author of Let me hear your voice reckons ABA cured her autistic children, although her evidence is not tight enough to stand up as proper research.

A fascinating read however and she is very honest about the pull of more outlandish therapies to desperate parents.

I think everyone on my MSc ABA course has read it.

Also some very positive results from work done by Richard Hastings from my uni here in easy to read form

(Tonnes of evidence to show that ABA prob. most effective treatment for ASD though)

Yurt,who told you that about consonants and vowels?

Also Yurt have you tried introducing whole words on PECS pictures then gradually fading pictures and increasing size of script until he is effectively whole word reading? A lot of work involved but a feasible entry into world of written info.

She's a consultant in the States moondog- is currently working on literacy for children who remain non-verbal after the age of 4. Very good academic credentials (inclduding Cambridge) and a behaviourist. She didn't say he defintiely wouldn't, just that it's unlikely. I think she's right tbh. (And it was also a relief to hear someone say it. She said that if children had two kind of sounds that it could be combined and that was something to work on. Without that it was very difficult (although you can never predict). In ds1's case he was able to imitate 'ba' for about 2 weeks then that went (to 'ya'). He's never been able to imitate any other sound (including vowel sounds).

He can read (and type) quite a few single words now. We want to try and get that into sentences (but his language isn't up to it yet - this program teaches the necessary language along with reading, handwriting and typing).

Ok

Interesting.
I am struggling a bit with the whole VB at the moment (my course director says he keep expecting me to lay into him in lectures!) as the model of acquiring language is so different to everything I have learnt in my first degree (French/Linguistics) and subsequent SALT training but that is not to say I am not open to it all!

Fergus Lowe and Pauline Horne from Bangor have made a significant contribution in past 10 years to building on Skinner's model.

That's great about reading and typing words.How do you know he is reading them? is it a covert task (ie is he matching to picture)?

Have you tried the PECS picture/writing combo?