INSIDE OUT

A recent disappointing experience led me to write a letter to our City's Autism Team. The first email you will see is to the Autism/GI Social Worker. Yes, you saw that correctly. The IWK has a social worker who deals with BOTH Autism AND Gastrointestinal patients. Ha! Evidence there's a link? No, none at all. *sigh*
This social worker is actually quite amazing. Struggling with her own health issues, she understands my frustrations. My hope is that they will read this letter and add it to the many other families who speak their mind about the favorable outcomes of the behaviors associated with Autism and Elimination Diets. They have heard of other families like mine. I felt the need to take it one step further...

Hi Michelle,

I want to say thank you for being there at our last appointment. It is good to be able to vent to someone. You seem to know how to take it well. ;)

If you hadn't been there, I had a lot to say to Dr. Kawchuk. I actually had a written "speech" I was going to give to her. Once I was at the appointment, I figured that I would vent my frustrations to you, hoping that it would be passed on to the Autism Team. What I should have done, however, was allow Dr. Kawchuk to hear these frustrations from my own voice.

I was quite disappointed by - what I perceived to be - an agenda regarding Dr. Kawchuk's questioning of why I am choosing not to vaccinate. Her speech about Dr. Wakefield's retracted statements regarding the issues of vaccination and Autism link is not the only reason not to vaccinate. I have three children. My only child with Autism (and the most unhealthy) is the child who has had all of his vaccinations until this point. My second "unhealthy" child has had almost all of them. My healthiest child has had the least amount of vaccinations (only the first two) and therefore, my own family's evidence supports my decision. What I have chosen is my choice and should not be the sole issue surrounding my son's medical questions.

The attempt to "inform" me about vaccinating was not the most serious disappointment in this recent appointment. Yet, the obvious "push" into getting me to vaccinate, followed by presenting a book on "Autism's False Prophets" was. In actuality, some of these so-called "false prophets" have taken part in the defining influence toward recovering my son from the many symptoms, which the IWK team used, to diagnose my son in the first place!

The appointment I had on May 12th at the IWK was inexcusable. The only other beneficial topic brought up merely dealt with calcium - one out of MANY important nutrients. Knowing that we were on an extreme elimination diet, I am disappointed that my son's nutritional health was not pursued further.The inability of the IWK Autism team to recommend these elimination diets is one thing. But to pretend they don't exist is a potentially harmful phenomenon that I fear will only create worse scenarios for future children diagnosed with ASD.

There are far too many families discovering the beneficial effects of elimination diets to ignore. I believe I am well versed in how to properly feed my children in order that they are receiving the proper nutrients. As well, I have the financial support to afford multivitamins. There are many other families who do not have these luxuries. Yet, some of these families will try "anything" for a chance at hope. And believe me, hope to recover many of these children's symptoms is out there to be found.

I was quite disappointed, yet not surprised, at the way in which Stosh's improvements had been practically disregarded. Please, lets be clear. I did not want to hear, "good for you", or a pat on the back. What I wanted to know was whether or not they are taking notes. My son has recovered almost ALL of his symptoms and not ONE behavioral intervention they subscribed for him was the cause for it. My son is intelligent, yes. I believe he was intelligent a year ago when they diagnosed him with ASD. There is no reason why almost every single "symptom" should have disappeared on elimination diet alone if there was no scientific reason for its disappearance.

To completely disregard this evidence and neglect to build on these positive steps for someone under their care is ignorant, at best. Stosh needs to continue down the path, which is healing many of his symptoms, and he needed help from the IWK Autism team.

I am disappointed and frustrated. I hope in the future, better care is taken for those who will also be the subject of such denial and lack of support. I have written a letter to the IWK Autism Team. It is my hope that you will be able to send this to them and that they will hear my voice for themselves.

Thank you, Michelle for your time and support. They are lucky to have you. Please pass along this letter to Dr. Vanier and Dr. Kawchuk.

Sincerely,

Here is the attached letter:
To the IWK Autism Team,

Firstly, I would like to thank the IWK Autism Team for bringing to my attention, the awareness of Autism symptoms that had my son feel so far away from us. Because he was such a pleasure to be around, we had no idea of the potential to not have had our son form healthy and long-term relationships with those around him who love him.

I still hear the chilling words you spoke to me. You told me that my son has a neurological disorder, which he will have for the rest of his life. I left here feeling empty, fearful, and helpless with nowhere to turn. I was given “brochures” with the attempt at directing me towards support. Yet, the journey I had already “stumbled upon” would prevent me from being honest at times and turning away from those who tried to “support” me. There were those at the Autism Center who felt I should “embrace” my son’s symptoms. After what I saw during the previous weeks, however, I knew that embracing these symptoms was the wrong thing to do. I could not find one professional who would journey “with” me to help continue the recovery I was already seeing in my son.

In the year since Stosh has been diagnosed, I have learned more from a vast community of parents whose children were also diagnosed with Autism Spectrum Disorder. Listening to the many cases and seeing how my own son was not helped with his own chronic constipation, I found hope in their stories. Hours upon hours, week after week, I researched the theories behind the link between gastrointestinal issues and autism.
One month before my son was diagnosed as having ASD, my high-tolerance-for-pain son would buckle over on the couch in stomach pain. Doctor after doctor, followed by a disappointing visit to the GI specialist at the IWK, I decided to put my son on a gluten and casein free diet. I was not sure what would happen. Nor did I believe that it would help much. But, I was desperate. Three weeks later, my son not only stopped complaining of pain, but his speech improved, his eye contact improved and various other “quirks” we saw in him began improving. One week afterwards, he was diagnosed with ASD.

Since that time, I have placed my son on the Specific Carbohydrate Diet. If complex proteins were affecting my son’s behavior the way the IWK Autism Team and my family saw, then surely these proteins were finding their way into my son’s brain. Because of this, I knew removing these complex proteins were merely placing a band-aid on a deeper problem. So, on the Specific Carbohydrate Diet (SCD) we began. The improvements on the SCD in the past six months has provided evidence to myself, my husband, and every single person who knew my son merely one year ago, that elimination diets recover many symptoms in those with ASD.
Yet, throughout this year I’ve felt very alone.

Along this journey, I have not heard one Autism Psychologist, Pediatrician, not one GI specialist, allergy specialist, not either of the TWO dieticians brought into our journey (who, by the way, saw no substantial evidence of why my son had the GI issues he had), NOR any professionals outside of the IWK - and recommended to me by this team - speak of what, inevitably, is recovering my son from almost every single symptom used to diagnose my son with Autism.

I realize that there is not enough empirical evidence to recommend these diets and the many biomedical approaches, which recover some children from their label and many others from most of their symptoms. However, I still cannot understand why the gluten free/casein free diet is not only hidden from this autism community, but silenced and often times, discouraged by each and every professional I’ve come into contact with over this past year. Not only that, but even though the IWK Autism team knew I was using an elimination diet to treat my son, not ONE dietician followed through with us to ensure my son was properly receiving all his nutrients and was instilling this diet appropriately. Not one letter was sent to my doctor and on top of this, I even needed to “push” my family doctor to have these nutrients tested in his blood work.

While, again, I realize you may be unable to “recommend” elimination diets, you are still obligated to these families to help them take care of their children the best way you know how. By turning your backs on the plentiful case studies that are out there on the benefits of elimination diets, you are turning your backs on the many families who could lead more fulfilled lives, a more peaceful home, and an easier path with which to journey down the behavioral interventions you subscribe to our children.
I know this hope is out there for others like myself. It only takes meeting a beautiful family with a child who has ASD to find that these elimination diets work. Ask any one family who has a young child with ASD and GI issues. I can say with all of the confidence in me that if they went on a gluten free/casein free diet with the right support, their child would experience a minimizing of many symptoms. It is real. It is not imagined. There are no “false prophets” knocking down my door. There are only those of us parents who have heard and now have seen it with our own eyes.

Luckily, I am a stay-at-home-mom who could implement this diet for my son. I have a husband who works hard and takes care of us in order that we can financially afford this diet. I feel an injustice is done to those families who hear about this hope and who are discouraged, silenced, and neglected when they DO decide to follow their instincts. They may not have the time or the education behind them to research the way I have been afforded. They may also not have the strength to fight for their child to ensure that proper care is followed through with their General Practitioner to increase supplements where needed. In addition, they may not be able to afford the supplements needed because they have not had the support to teach them how to implement diet in such a way that supports the nutrients required for their child. This leaves a huge gap in the system. A gap, I believe can be rectified if proper dietary support was initiated.

In conclusion, I would like to make three recommendations, based on my experience as a family member with the IWK Autism Team:

1. A dietician should be brought directly into the team or at the very least, I strongly recommend that a dietician be brought in on a part time basis. This Autism Team needs a dietician who is properly versed in the gluten free/casein free diet, the Specific Carbohydrate Diet, and some of the other diets, which are useful in terms of the Gut-Brain connection. When a family, such as mine, insists on using elimination diet as part of their therapy, an educated dietician will have the means necessary to ensure that this diet is in accordance with the proper nutrition necessary.

2. I believe that blood work be recommended and a letter sent to the family’s GP to test for all nutrients.

3. I also recommend that when a mother tells you her child is prone to eating electrical chords, swallowing dirt and all other things near them, that you follow through on lead testing.

4. A social worker should be brought in when a family is told their child has Autism. When a mother or father is initially told this news, it is almost like a death in the family has occurred. I needed someone to tell me that my son is still the same child. A simple thought I could not have afforded myself under such circumstances. I did not feel enough time was given me to mourn as I sat in that room, unable to speak at times. At, what I felt was an insensitive moment, a pile of “brochures” was merely handed to me. This did not help me in that moment or the weeks that followed. I look back on that day and wished it did not send me into, what seemed like, a possible depression in the weeks to follow.

These recommendations, in my opinion, should be one of the many first steps following the diagnosis of a child with ASD.

I understand that funding is oftentimes an issue. One possible solution is that you implore the families to help with fundraising for these important steps in helping the behaviors known to Autism. Again, at the very least, make these needs known to families such as mine. I believe we will make the time to help fundraise. Those of us discovering how important elimination diets are to their children’s recovery, will be more than happy to help if they are aware of the help it will bring to their families.

I thank you for your time and I sincerely hope you learn from our struggles with this team and seriously take them into consideration in the near future.

Sincerely,