This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.
I wanted to share with my blog subscribers and general visitors a Facebook page I’ve set up. I’m really not sure what I’m doing- FB has always been a bit of a mystery to me. However, if you are a user it would be good to get some Likes and maybe spread the word to friends. Blogging and using FB anonymously makes it difficult to make friends!
The page is here:
Your support would be much appreciated. Thanks.
You’ve just described our DS with the sensory issues and switching off. Apparently he hums a lot in class too, I’ve never noticed it at home. DS loves to touch our skin and constantly finds the bits you don’t want him to touch 🙂
He gets on well with DD, but again she brings out the responses you don’t want; its hard for the siblings. That aside, where you mention the feeling of not being able to carry B – DD has extreme sensitivity to touch and we can’t cuddle… heart wrenching at times.
Wasn’t sure where to post this as it’s not really a reply to your latest blog but I thought this mother’s testimonial of over coming fussy eating in her autistic child might be of interest.
Thanks for the link. It’s very timely as today we started to reduce B’s gluten intake. The cupboard is stocked with (expensive) gluten free biscuits, bread and pizza base mixes. I’ll be sure to have a look at this page. I also have the book shown on the page so I should dig that out too. Thanks for thinking of me.
That’s brilliant news that you are going to go GF. It’s a great first step but I do have to say (and you’re not going like me for saying it with a expensive cupboard full of GF food) that if you decide to follow GAPS it is grain free. So it means no wheat, oats, corn and even no rice and no potatoes (although it’s not restricted forever, she suggests min 18months – 2 years).
She writes in her book ‘GAPS’ pg 92 chapter ‘The Diet – A Discussion’
“The fact that this kind of GFCF (Gluten Free Casein Free) diet gained such a world-wide acceptance as the diet for autism is very unfortunate, because it addresses only a small part of the whole picture of autism: the gluteomorphins and casomorphins. As always, a lot of commercial companies jumped on the bandwagon, ready to supply GFCF pre-pared foods, full of sugar, processed carbohydrates, denatured and altered fats and proteins and many other substances which autistic children must not have. Every publication on autism is full of advertisements for these foods, lulling the parents into a sense of false security: if it is GFCF it must be fine for my autistic child. Books are written full of recipes, based on these processed carbohydrates, sugar, altered fats and proteins. Websites and internet chat groups have been set up exchanging the same kind of recipes…..
This is just one of many examples in our human history of scientific data being used in the wrong way. There is no doubt that gluten and casein are better out of the diet of an autistic child. But these two substances are by no means the only decisive key to autism, schizophrenia and other GAPS conditions. The core issue, which we have to deal with, is the unhealthy gut ruled by abnormal microbes. An appropriate diet is an absolutely essential part of the treatment. But it is definitely not the GFCF diet, as we know it.”
I found a good explanation of why the exclusion of all these grains is needed on GAPS at this website http://www.thehealthyhomeeconomist.com/2010/07/heal-your-autoimmune-disease-now/
For me my journey to finding GAPS started a couple of years before when I read ‘The Diet Delusion’ (called ‘Good Calories Bad Calories’ in the US) by Gary Taubes. He’s a science journalist and it’s a great tomb of a book where he has done a meta analysis of all the dietary research to data.
One of his main conclusions is there is much evidence suggesting our diseases of the western world (heart disease, obesity, diabetes, cancer, Alzheimer’s etc.) are due to our increase consumption of sugar, processed carbohydrates and industralised vegetable oils.
I only mention it because I think it is reassuring to have independent voices confirming the healthiness of the foods Dr Campbell-McBride is advocating to eat on the GAPS diet (i.e. real unprocessed food of old).
This link is to a lecture given by Gary Taubes and is a good summary of his book. It’s long at well over an hour and still doesn’t cover everything but it’s a lot shorter than his (brilliant) 460 pages.
Just wanted to share something I’d heard recently which is relevant to this post. Apparently the NHS does have the responsibility to fast track appointments for anyone with Autism. Apparently this is included in a recent piece of government legislation (I think called the Autism Act) and if you quote this when booking appointments you should be fast-tracked. Not sure how this works in practise and I appreciate that you may have already looked into this possibility and may be better informed on it than me, but thought it might be helpful. Your blog is a really interesting insight into understanding and caring for a person with autism from a non-autistic perspective if that makes sense. I work with adults with autism and its really interesting and useful to learn about Autism at the beginning as it were, from reading your blog.
Wow, thanks very much for the above links and advice. I’ve got some reading to do!
Just a comment on the sensory issues. Some days Alvin has a ton of them and others very few. Normally he has issues with crowds and noise and this weekend while visiting an auqaruim and crowded market place he was fine. When we walked out to see an airplane that had its APU running and no engines he freaked out.
I don’t always handle the situations correctly. I do say his name over and over at home instead of getting up and showing him what I want.
When it comes to sensory issues I think its a learning process. They are always evolving and we just have to learn to evolve how we deal with and to teach them better help themselves.
I am often surprised that B handles crowded situations as well as he does. Having said that, he runs around a great deal stimming loudly. The thing is, he smiles whilst doing so and appears happy. I think the stim is making him happy as he ‘regulates’ himself. If he wasn’t overwhelmed, perhaps he would be calmer. I have a lot to learn, clearly! Thank you for your wise words.
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