Another question for adults with AS/ASD

[LizK]

Just posted on the medication board about my dilemma about whether to go ahead with urine testing and dietary intervention for my 3 year old son who has a speech delay and some Aspergers traits.. Was chatting about it with my H last night and he said he'd have hated such a restrictive diet. My DH has some Aspergers tendencies, similar though not so prounounced as DSs. DH remembers the world being a very confusing place until he reached his teens. He seemed to have a 'matured' out of his traits to a degree as he got older though he still reckons his brain hardwiring is slightly different to others! Anyway I digress. I know my H struggled with certain things as a child, was anxious, didn't 'get' certain social situations, few friends until pre-teens, dyspraxia etc. I asked him last night would he have preferred to have gone on the cf/gf diet if it would have improved this but he said no, he would have been miserable on a restrictive diet and prefers the life he's lived and his way of thinking. He is married with a family and a good job so why would he want to change his life. His one regret is that his dyspraxia mean the found football hard and that amde it even harder to fit in and make friendships with simialr aged boys. Despite that he says he developed interests and skills in areas where he probably wouldn't have otherwise.

 

Am getting to the point I know DS is different to DH, that his difficulties seem to be more pronounced plus he has a speech delay that DH never had. However this conversation really made me think and question how much such interventions are for the benefit of DS or not. I want him to achieve his potential and maximise his opportunities for his future, I know some of his problems cause him upset and distress but neither do I want to change nor 'cure' him. Until last night I had never thought about it from DS's point of view and it is difficult to know what to do for the best. DH is not keen to go down the dietary path probably in light of his own feelings regarding his childhood and also because some of DSs traits aren't necessarily a bad thing, don't impair his functioning but just a different way of being.

 

Posting really to get the viewpoints of other adults with AS/ASD. Would you have wanted a limited diet or other interventions as a child with the aim of improving your 'symptoms'? Would it have made a big difference to the quality of life and happiness if successful? If not what would? Or are you happy as you are?

 

Hope this post makes some sense!

 

Liz x

[mossgrove]

A very difficult question to answer. My situation sounds very similar to your husbands in that much of my childhood has only made sense to me since my Son was diagnosed with Aspergers. I can now undestand why some of my all-consuming childhood interests (Which were often considered weird by my peers) were infact special interests.

 

I too found that things became easier to deal with as I got into my twenties and beyond. Tony Atwood has observed that it isn't always the case that people with Aspergers don't 'get' things, it's just that they get them later in life, and maybe not to the same extent. Hence I also have a job and a family and in most ways 'pass for normal'

 

That is digressing slightly. The reason your question is hard to answer is that I was never aware that I had issue that may be treatable. I know I was phsically and socially clumsy and didn't seem to 'get' things that were obvious to other children, but there was no name for it or a diagnosis back then.

 

3 seems very early to go onto such a rigid diet. I think I would have resented being put on such a diet before I had any understanding of why I was on it. It certainly would have increased my sense of not being like other children.

 

That said, it may still be worth going ahead with the urine testing as there is nothing wrong with having allthe available information before making a decsision.

 

You should also read 'Martian in the Playground' by Claire Sainsbury as it offers a wonderful insight into what lifeis like growing up with Aspergers, and may help you in reaching your decision. Your husband will probably recognise much of what she writes about, I know I did.

 

Simon

[BuntyB]

I can't really see what you have to lose by trying it. It may improve things and in my opinion, kids are pretty good at telling you, even with limited speech, if they hate their diet!

[call me jaded]

Meant to put this on the other thread.

 

When we first did it I made the entire family do it. My husband (coeliac in his family) sticks to it rigidly (was going to say obsessively, LOL) and he was the kid that ate half a loaf of bread on his way home from the corner shop.

[ceecee]

I personally was unaware I even had aspergers until recently.So for me my aspergers was so mild that I didnt need intervention really.But I realise not everyone is so lucky.I too think I pass for normal unless you get to know me fairly we ll.

[baddad]

Hi Liz -

One thing I would say is you seem to have too many concerns about how restrictive the diet is - It isn't!!

For almost everything your child likes to eat there'll be a GF/DF alternative - many available 'off the shelf'. Some are indistinguishable from non gf/df products, some are different (but not necessarily 'bad' different) and some are downright awful! No different to the (i.e.) Heinz baked Beans versus Cheezy Peas - It's all a question of what you like...

Some things are more of a problem than others; Bread, Pastry and Chocolate being the things that stand out, but other options do exist, and often the diet will be more varied, imaginative and (dare I say it) healthy, precisely because these things aren't so reradily accessible.

Ben has been on his diet for years, and from day one embraced it because it made him feel 'better'. It didn't 'change' him in any way - there is no CURE despite the ravings to that effect you'll find on some sites - but it did help him to control some of his 'wilder' impulses and eradicated the incredibly uncomfortable and upsetting bowel/vomit problems that had plagued him. Those changes benefited him directly - they weren't for me or anyone outside of the loop (i.e. school) and he wanted them... Even at 8 he has enough understanding about his own condition to make informed choices about food's that effect him, and things that he's found unhelpful (i.e. ritalin) have not been forced upon him despite external pressures.

Hope that's helpful

L&P

BD

[Zemanski]

Liz, there's a thread on interventions and 'programming' going at the moment called 'research' in general discussion with quite a bit about the ethics of certain practices and about whether or not some interventions even have the effect they are supposed to have/ NTs think they have - it's not about diet but it is interesting

 

Zemanski

[LizK]

Thanks all Replies were food for though - ha! ha! Sorry for hideously late reply but PC inconventiently went kaput

 

I think my concerns about the diet in part do stem from my H's viewpoint and his perceptions. Also my youngest (NT) son is intolerant of cows milk protein and as he is still breastfed both he and I are on a dairy-free diet which is a complete PITA! Aside from health concerns none of my family can stomach soya though I have learned to love rice milk. I have tried my older son (ASD) on rice milk but he turned his nose up at it too and asked for the proper stuff ! The 'free from' ranges at the supermarket are generally gross too. The thought of doing that plus a gluten free diet too does daunt me so unfortunately it does seem very restrictive. Maybe I'm just lazy ! Anyway have decided to do the urine testing and take it from there.

 

Thanks for the book recommendation and for pointing me in the direction of the other thread, read with interest

 

Liz x