My Autism Disclaimer

This is a difficult post to write. Not that it is emotional for me, but rather…confusing. There is a lot of talk out there about autism, what causes it, who gets it, and that it is on the rise. There are also those out there that claim autistic children are ‘indigo children’ sent here from the aliens’, or God, to teach us how to really communicate and to prepare us for the end of times. I almost feel like I need a whoopee cushion to read back what I just wrote, for appropriate sound effects.

There is also a large group of people who believe that autism is curable and there are many studies to back the claims for special diets, supplements and detoxing chelating therapies.  This same group believes that vaccines cause autism and that mercury is still a key ingredient in the vaccines given to our children, and that mercury poisoning is causing autism.

I want to make it really clear here, that I am not on any side of these issues. I am on Matthew’s side and I am on the side of any parent that feels they need to do whatever they can do the help their child.

I don’t know what causes autism. What I do know is that I have not ever met two autistic children that are the same. What this tells me is that autism may have many causes, many symptoms, and many different outcomes. It occurs to me that maybe what we call autism today is really something else presenting as autism symptoms. I don’t know, I just feel it.

What I do know for sure is that the medical community needs to open their minds to exploring alternatives for children presenting with autistic symptoms. At the time of diagnosis the child needs a plan created specifically to that child that may include biomedical interventions, as well as behavioral interventions. If we discount what the ‘Jenny McCarthy’ group is saying, then we may be missing a key component to helping these children. At the same time it is important for parents to realize that not all children are the same, and they will not all react the same way to biomedical intervention. Therefore it can also be said that they will not all react the same to behavioral intervention either, which is why there are several different approaches on the market to try.

That being said I have included a link for the Talk About Curing Autism web site to my blog. http://www.talkaboutcuringautism.org/index.htm
I decided to include this link because I think this is an excellent recourse for parents wanting to try the GFCF (gluten free dairy free) diet intervention for their child. It is full of great recipes; product lists, and advises on how to work this diet.

Anyone whose child has been diagnosed in Vancouver at Sunny Hill would have been told what we were told. These diets don’t work. Don’t waist your energy, money or time. Personally I think that is terrible advice to give a parent. The better advice to give would be to try the diet; if you feel you need to, for a time. If you see no significant change then go back to they way things were. If you see changes that matter then stick to it religiously. It is just food, not drugs. The worst that can happen is that your kid will like gluten free waffles and you will be stuck buying them until he is on to something else!

When we were given that terrible advice it did stick in my head that there was an alternative. Because to say that these treatments don’t work they had to be mentioned. How silly of Dr. Narrow Mind! Don’t tell a desperate parent that they can’t do something!! I got on the Internet and researched the alternative treatments. In the back of my mind I stored the information, bookmarked what I felt might be relevant to us, and discarded the indigo theory out right! I was keeping mental notes on what Matthew ate, and starting to associate foods with behaviors.  But I was afraid. I was afraid of what people would say if I did anything alternative without a significant medical reason.

So it was almost a year later when Matthew was skinnier then a post and heading into an invasive heart surgery, vomiting regularly, and on a wait list to see the gastroentronologist, that I called the pediatrician in a panic. What are we going to do? He will only eat toast and drink milk.

Thankfully our ped is educating himself, to an extent. He gave us the go ahead to try a gluten free diet. The changes we saw in Matt were remarkable. Within 24hrs he was eating more food then he had eaten in a week! He was happier, calmer, less reactive and his language nearly doubled.  We have not looked back since. He is not cured, by any means. But he is better.

There have been times when Matthew has grabbed some wheat toast when my back was turned, and I did not see any adverse reactions, other then maybe some unusual stools. But I am not going to experiment with something that made such a remarkable difference to him. Maybe when he is older and can communicate more efficiently we might try putting him on a regualar diet. Life might be easier then. But until such time I am sticking to this gluten free thing.

We did not try the dairy free route because, to be perfectly honest, I just cannot imagine having to manage that when I have a perfectly normal typical child who drinks milk by the gallon. How do I say no to one child, and not the other? How would I balance their specific needs? It is already such a challenge with them being so close developmentally. It is much like having twins, even though they are two years apart. If I could imagine a way to do it, I would certainly try.

This leads me to my conclusion on this subject. Every child, family, and situation is different. Parents should be encouraged to do what they can and not discouraged from trying something that might make a difference. If trying an alternative does not work then you have just narrowed down the list of causes for your child’s condition. And that can only be a good thing.

I feel like there is so much more to write on this topic. I have really only touched the surface.