ASD 'treatment'. What have you tried?

[LizLocket]

I use the term 'treated' very loosely but my poor brain can't think of a suitable alternative this late into the evening.

I'm not sure what I think about the whole interventions/treatment issue with ASD. My son's autism is an integral part of him making him who he is so getting rid of his autism would be like getting rid of part of him? Sometimes think society needs to change, not my son. Yet like with both my boys I want to do whatever I can to maximise his potential functioning and make his journey through life as easy as possible. To reduce the times when I see the confusion in his eyes when he doesn't fully understand what someone is telling him or the anxiety and distress he shows when can't get to grips with a new social situation . Read so much these days about the importance of early intervention programmes and it's benefits for the future functioning of the child.

Reading websites about the various behavioural, educational and biological interventions is mind boggling to say the least! It takes you long enough to read all the info before even thinking about embarking upon doing it!!! I don't think we've gone down one particular pathway. DS has speech therapy and I'm using the More Than Words book (such an great book ) at home which really suits my son. We are starting Early Bird in a fortnights time too. We have weekly visits from a teacher from the Early Yrs service who does playbased activities with DS, similarly at nursery where they have set up a basic behavioural programme for him too to help his play and social skills.

I admit to being quite sceptical about biomedical interventions though am now wondering about the gf/cf diet. My youngest son is dairy intolerant and we have recently put DS1 on a low dairy diet as he has sloppy poos and it seems to have helped this and may his concentration. We tried fish oils but it gave DS1 nightmares so we stopped them. He's also on prebiotics which I'm not sure are doing much but not likely to do any harm so am sticking with them.

I suppose the other thing we've tried is not aimed at my son at all but at us adjusting how we do things and structuring our lives to make life easier for him. Took me a while to realise that interventions weren't just about changing DS but also about changing the environment about him too

I know this is so individual, different interventions working for children on the autistic spectrum but just curious really as to what others have tried and whether it has helped or not

Liz x

My advice is DO NOT consider secretin. A US mum, Victoria Beck I think, reported improvements in her child after a gut investigation/operation when Secretin was administered. However, it has no evidence except anecdotal and there has been a well regarded study showing it is not effective. Added to that it means injecting your child with something, potentially very long term or forever. I wouldn't consider it with a non-verbal child. GOd, I remember what I called "the great Secretin rush" when it all first came out and everyone was put under so much pressure to try it. We decided absolutely not at the time and a Gastroenterologist I know, because he has an child with ASD, gave a very clear explanation of why it shouldn't be considered, but it was some years ago and I can't repeat what he said
Then there was scandal as it turned out that lots of the kids were being given salt water and not secretin and one doctor went to prison because of it!

mmddww, I didn't forget it, I've never heard of it! I'm not one for Trial and Error I'm afraid, we only stick to the long, boring and slow process of education and maybe some other things that are very moderate.

Methylcobalamin is being used at various private clinics in the U.K. including Dr Heard at the Breakspear hospital and any GP can request MB12.

Its totally harmless vitamin b and aids in the methylation pathways. You could take the whole vial and it wouldnt hurt you. What it does is kickstart the production of many things like glutathione and methionine and aids the detox process.

The U.S. is using it for quite a while now, but it has taken some time to catch on here. We did a trial run of two months but my son wasnt ready for it as he had other issues to fix first. We are going to go back to it in a few months time as it really was bringing some radical changes.

mmddww, is that the thing done by Dr Walsh in the US? If so, a good friend of mine went over there to see him and tried this "treatment". She was absolutely committed to it but then stopped and I've never quite got to the bottom of why she stopped. We don't see eachother that often and always have so much to talk about, we always get side tracked.

dont know Dr Walsh. Its Dr Neubrander who is famous for the mb12 in the states:

www.drneubrander.com

He has about 25 hours of testimony of parents and kids about the great effects of MB12. Well worth viewing. also has some peer reviewed papers on pubmed.

A doctor in England in the 1980s was doing this "therapy". He had a whole clinic load of patients. One day they cut his funding for no reason. The patients were lining up at his door and it was locked. He had glommed onto something then and it took 20 years to get back to doing it.

he was at the Westminster hospital.

Socci, I can't say because I can't remember. It was quite some years ago and all I know is that it was very convincing and he had no vested interest. I also don't have a link to the research I mentioned but I could dig it out when I have time, but I DO know its there somewhere....