June 11, 2015

This week, I read the article, ‘Autism Diets’ Do Not Provide Children With Adequate Supplementation, Can Lead To Overuse, on the Medical Daily website and reported here on Autism Daily Newscast. It was based upon research carried out at the University of Rochester Medical Center in New York.

In a nutshell, the study claims that autism diets, also known as gluten free and casein free diets (GFCF) are ‘ineffective’, with many children lacking in nutrients that they need and that the diet can be harmful.

Dr. Patricia A. Stewart, assistant professor of Pediatrics at the University of Rochester Medical Center, stated that:

“Many families try a GFCF diet in an attempt to improve symptoms of ASD.”

Well, yes this is true, but many parents also do so with the guidance from a paediatric dietician, as we did for our son. He was suffering from stomach pains, having four to five loose bowel movements a day and we as parents just knew that something had to be done. His behaviour was altered due to the problems he was having with his gut, due to what he was eating. Four years on, although his diet is by no means perfect, putting him on a dairy free and gluten free diet is the best thing that we could have done for him. He is no longer suffering from stomach cramps, has better concentration skills, and has formed bowel movements. So reading research such as this, well it makes me quite angry.

Research has to be done, I understand that, but is all research valid? This study only included 368 children, so it was only a small study group. I also worry that parents will read this and then be plagued by guilt, in thinking that they have made the wrong decision in giving their child a GFCF diet. Well we do not need any more guilt.

It was also interesting to find out that Autism Speaks played a part in their research, with participants in the study gained from Autism Speaks Autism Treatment Network, and I am not a big fan of theirs, especially with their latest research initiative in conjunction with Google, in which they hope to create a database containing the genetic information from 10,000 individuals who have autism. This is so that the evidence gained can be used in future research to discover the genetic components associated with autism. This sends a cold shiver down my spine, and like many others I supported the #notMMSNG campaign, as I believed that what they were doing is so very wrong.

All Autism Speaks want is a cure!

My loathing for them first started when I saw, what I can only call their ‘propaganda video’, I Am Autism, which depicted a ‘monster’ coming out of a child, the monster being autism. This to me says everything that they represent.

Then I read the article, Autism Risk Highest For Older Parents, Teen Moms, And May-December Couples, Based On Largest-Ever Study Of Parental Age, posted on the Medical Daily website. You can find the Press Release here. The study, looked at the medical records of more than 5.7 million children, situated in five countries, and found a ‘significant link between the age of a child’s parents at birth and later risk of developing an autism spectrum disorder (ASD).’

This study was large, you can’t argue with that, but is it truly helpful? When is the right age to have a baby? There is no right or wrong age, and once again parents will be plagued by guilt. Did they have their child too young? Did they wait too long?

Then we have all the research focusing on chemical links to autism, the vaccine and autism debate as well as pollutants being the cause of autism.

The point I am trying to make is that although we need research, I think that what is more important is the here and now. We need early interventions; funding for our young children as well as help and support for individuals and families affected by autism. We need job opportunities for our young people on the spectrum. Research has its place, but please do not place any more guilt on parents’ shoulders. We are doing the best that we can.

About the author 

Jo Worgan

Jo Worgan is a published author, writer and blogger. She has a degree in English Literature. She writes about life with her youngest son who is on the autistic spectrum. Jo tweets (@mummyworgan) and is also a freelance columnist for the Lancaster Guardian. ‘My Life with Tom, Living With Autism‘ is her second book and a culmination of her blog posts, and available on Kindle now, along with her first book, Life on the Spectrum. The Preschool years.

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