Standing with Henry, Diets and Where Do You Go to Get Advice?

Please read, “like”, share and tweet my latest interview with 13-year-old Henry, published yesterday on Huffington Post.  For all you tweeters, I am trying to get Henry on Katie Couric’s show.  If you’ll click on the link above to read the interview, tweet the piece out and be sure to include @KatieCouric in your tweet.  This is what I’ve tweeted –  “@KatieCouric Henry’s fight for inclusion @arianezurcher  Katie – Henry’s story would be terrific for your show!”  If enough people tweet her, she may just take notice.  Let’s stand with Henry!

Yesterday’s topic brought forth a wonderful discussion regarding “The Diet” whether it is a gluten-free/casein-free diet or a variation of it.  I realized in reading the comments that my post may have sounded critical of the diet and even critical of those who have tried it with positive results.  This was not my intention and so I want to be clear about that.  I have a lot of feelings about having put Emma through so much trauma as a result of putting her on the (in our case failed) diet. The first time we tried it, when she was still just two years old, did not seem to have the same negative impact that it did just a year ago when I took all her favorite foods away and implemented an even more restrictive diet under the guidance of a well-regarded naturopath.  This is something Emma still talks about, something she is still hyper-worried I might suddenly do again.  I should have placed more emphasis on this.  So to all who have experienced the joy of finding something that helped you or your child, I apologize.  I did not in any way mean to illegitimize what you’ve found to be so very helpful or to suggest the diet is quackery.

What is clear from reading all the links people thoughtfully provided and the many personal stories, a GFCF diet and its various variations, has and does help many children and adults, regardless of their neurology.  An important point, made several times in the terrific comments, was that because of the hyper-sensitivities experienced by so many Autistic people, what might be experienced as a mild intestinal discomfort in a non-Autistic person could be felt intensely and painfully by someone with a different neurology.   Hence a food “intolerance” not even an allergy could cause great distress.

In the post I hypothetically asked, were I able to do it all over again would I have put Emma on the diet?  I wrote, “…I would have sought out a reputable pediatric neurologist who could have given Emma the blood work necessary to tell us whether the diet was something she would benefit from.  I would have looked for scientific evidence giving me reason to put her on such a diet and without that evidence I would not have put her through it.”  Except, I realized last night as I thought more about this, we DID do these things.  We didn’t have a pediatric neurologist, but we did take her to a highly regarded pediatric allergist, did blood work and it showed she was not allergic to anything, but he suggested she may have food intolerances that might be contributing to her constipation issues.  It was this doctor who suggested we try the GFCF diet to see if it might help.

But as one commenter pointed out, in her country there isn’t anyone who will perform such tests.  She wrote, “If I had to do it all over again? I would have done it sooner to alleviate my daughter’s suffering.  For the first few years it was just dairy I removed from the diet.  I thought it too hard to cook gluten-free as well. When I finally adjusted the diet to gluten and dairy free at the age of 4 my daughter ‘s chronic painful distressing diarrhea ceased..”  In fact both her children have responded well to having their diet modified.   Hers is but one example of many who have benefited from implementing such a diet.

To another commenters point, even if they had been able to find such a doctor, their insurance would not cover such tests and they wouldn’t have been able to afford them.   For people like these, who either cannot afford to have such tests run or who cannot find a doctor to even perform these tests, what is the alternative?  What can those people do, other than read and learn all they can while hoping their decision helps themselves or their child.  As any of you know who read the various links to the many articles I posted yesterday on the diet, those articles are NOT all in agreement.  Some state that the diet has shown no positive change, while others suggest that in some cases the diet has helped.  So what is a person to do?

Which brings me to another terrific comment, in which she asked, “…maybe we should really think, do we have proper medical care?  Do we have good doctors? Are we listening to them? Are we skipping the doc and practicing our own medicine? Why are we not trusting our doctors?” By the way this same commenter left another longer and hilarious comment on yesterday’s post that is too long to reprint here, but is really relevant to not just this topic, but ALL topics related to parenting, who do we go to for advise, where do we get our information and why do so many of us no longer trust the medical professionals advising us and instead listen to other parents who are often not doctors or even have any medical training, but have found something that helps or doesn’t help them or their child?

I know it isn’t just me who has come to doubt almost everything I read about Autism.  I know a great many people who feel as I do –  we are almost constantly skeptical. And while some skepticism is a good thing, I don’t know that my past radical approach has proven to be so beneficial in the long run.  These days when I have questions regarding Autism, but particularly related to my daughter, there are a couple of things I do.

1)  I seek advice from a number of Autistics I know, am friends with and trust.  I ask them for both their personal experience and for any research they know of that might help me.

2) If it’s a medical issue related to autism and Emma I run it by my brother who is a bio-chemist and spent years working for a pharmaceutical company developing drug treatments and whose wife, also a bio-chemist who now runs a non-profit trying to make vaccines available to children in third world countries.

3) I get a second opinion either by getting referrals to researchers or people (preferably Autistic) in the field or I reach out to various neurologists I’ve met to get their views.

4) I read whatever I can find, sometimes sending particularly dense articles to my brother and/or my Autistic friends who are involved in whatever field of study it is.

5) Discuss with my husband, foisting said articles on him and try to hash out what we think and what we should do.  If we cannot agree, revisit steps 1, 2, 3 & 4.

I have no answers.

Emma – Summer 2004

6 responses to “Standing with Henry, Diets and Where Do You Go to Get Advice?

  1. I didn’t think you came across as being critical of the diet. In fact, I believe you made it a point more than once to stress that this was just one story, Emma’s, and that you wouldn’t have tried it if you hadn’t honestly thought it would help.

    I loved the comment yesterday about Doctor Mom’s with a Google Ph.D. (*Cough* Jenny McCarthy types*) Ya know, I guarantee I’ve done all the same “research” you have, and I still haven’t got a clue.

    As for doubting everything you read, I do. Simply because autism is just something they DO NOT know alot about, cause it hasn’t been around long enough. The “experts” can guess. Parents can share what helped their children. Studies can, and should be done. Every avenue of possible causes should be looked into. But, *meanwhile* – what’s the point of spouting off “knowledge” that has no basis in fact? What is wrong with admitting that, as of yet, we don’t have a clue?

    I liken it to religon, in a way. My feelings on organized religion are pretty simple, I have no use for it. My theory is that, you know what? There is an entire, endless Universe out there we know virtually nothing about. We’ve only just begun to scratch the surface. For all we know, some otherworldy race could’ve started us in a petri dish, as an expiriment. They could be watching us all the time, cringing at all our *uck ups, like some big cosmic cartoon channel. The point is….HOW DO WE KNOW??!! And who are we, to SAY that everything was created by “God”? Whose God? I’ve never met this fellow. And THEN we’re arrogrant enough to tell everyone else what THEY should believe? REALLY?

    That’s how I feel about autism. There are a few real, solid things we know. It affects more girls than boys. (I’d love to see a post about how girls on the spectrum are neglected, research wise!) There are certain behavoirs and characteristics that identify it. You can’t predict what child it will strike, even if there is a family history. Beyond that, you know what? We know nothing. And that’s ok, we have to start somewhere. But instead of beating eachother over the heads with what we THINK we know (like religion) why can’t we all just stop insisting that “we” have all the answers, already?

    Hope this rambling makes some sort’ve sense! 😉

  2. Where do I go for advice living in Melbourne Autsralia? My 2 children are now aged 11 and 12. When the oldest, my son, was diagnosed there was just about nothing in the way of advice available and pretty much zero early intervention as the side of Melbourne we lived on (I found was definitely the wrong side of the bridge) for receiving services. Very little government funded early intervention – 1 hour a week for the lucky ones after a two year waiting list. A long waiting list to even get a diagnosis. Even then those providing it really didn’t have much knowledge themselves. The only other option here was ABA – paid for privately – very often destroying families financially. So we paid for a private speech therapist – My son was almost non verbal and did Music Therapy because that is what he responded to and loved.. I read about the casein and dairy free diet on the internet- it was never described as a cure for autism. Sometimes I think that is what people want to hear- that it is a cure- so that is what they do hear. I knew that in my family some of the children had severe food intolerances and so it seemed quite possible it could make a difference. It did. The paediatrician who diagnosed my son directed me towards a dietican at the hospital to do it safely. It made a big difference. We then included dairy again and the hyperactivity and distress reappeared. I attended any lecture given on autism by psychologists and actual adults with autism. I read books by peopole like Donna Williams. I worked with my children themselves teaching them how to use PECs, how to sit at the table, how to dress themselves, I used coloured clothes pegs that my son loved for how to count, learn colours, do “on”, “in” and “under”… I made PECs cards out of shopping catalogues and covered them with clear contact. I continually raised the lack of Early Intervention Services with politicians and wrote to papers. Was made promises that were never kept (to shut me up just before an election) I watched my daughter regress and lose skills, I watched her sob and cry and there was no help for her no mtter how much I begged.. Then we campaigned endlessly for an autism specific school beyond grade 3. They are available everywhere else but we had to fight for one. We were put into the position of having to argue for what the government described as seclusion as opposed to inclusion. Mind you, if you lived in wealthier parts of Melbourne the govenrmnment saw no problem with this. I visited schools interstate to actually see autism specific schools. Organized a a public forum before our state Election, helped run a media campaign, met with politicians from different political parties, worked with them all and met with education deapartment officials. It is now going to finally be built, but too late for my children. I never looked for cures but ways to help and educate my children. Ways to help them learn to function. Often advice is conflicting. Especailly I find advice on how to deal with behavior issues that I am not comfortable discussing on a public forum. My children’s life has been made too public as it is just in fighting for a school- Try googling my name sometime and you will see what I mean. We keep plugging along and we keep fighting government bureaucrats for services. We share information with other parents in support groups and we socialize with each other. We just keep plugging along. Frankly, I don’t think even if we had more money there would have been much more available to us where we live. Often people pack up and move interstate or overseas if they have dual citzenship.

  3. God, Liz, this makes America look like paradise in comparison. I knew of some of this from things we’ve spoken of, but I had no idea the degree.

  4. I am so sorry for all my typing errors- I was in a rush to get to the hospital for an doctors appointment for my Mum (not my kids for a change)

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