Age of Autism Comment of the Week: 11/21

Cathy R.  is our commenter of the week. Please email me at KimStagliano@gmail.com with your T-shirt size (M-XL) and mailing address. Congrats!

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Cathy commented on Katie Wright's post,
Children's Hospital of Boston: Is Autism Really on the Rise? 

Katie - A little over three years ago we started our biomed journey via yahoo medical boards looking at apraxia. After administering EFAs and VitminE to my nonverbal 5 year old son, he began to approximate speech and learn to speak. I talked to my ped and he wrote perscriptions for the many tests I wanted done to see what was going on with my chronically constipated child. He was kind enough to write the orders and then tell me he would be unable to understand any of the results that came back. "Call children's and see a GI or metabolic specialist".

I sat down in front of my computer and searched Children's website (my son had been there for ear tubes, tonsils, ortho consults, etc) for these specialists. I called and talked with a very nice woman and explained that I wasn't sure where to start. Should I see a GI or metabolic specialist, my ped wasn't sure (didn't need a referral we had a PPO) and could she help. Ohhh she was so kind and we joked about poop and she suggested I start with GI. I mentioned that we had just gotten my son's autism diagnosis a few weeks ago. Silence. "Well, I'm sorry. We can't help you. We don't treat autism here". "No," I said, "I don't want you to treat his autism. I need help with his stomach and digestion". She persisted "but I'm sorry, we don't treat autism here". I was stunned. So I hung up. And I found the DAN! network.

They also had a 2 year waiting list for an evaluation. I waited 3 months at the North Shore Children's hospital and was treated like a human being. I will agree with the comment regarding MGH/LADDERS. We are receiving comprehensive care and real help for my son's digestive issues with the help of Dr. Buie. It only took three f'ing years and god only knows how much damage to his gut and self esteem.

All these huge institutions that get autism money need us to hold them accountable so they don't go back to their offices and say "whew, job security for another year or two...mental masturbation time with statistics and genetics."

Feel free to email me - I'm assuming AoA has the email since it's required to post.

Many thanks, Katie - for everything.
Cathy

 

Comments

[Lin]

Good for you Cathy!! You are such an inspiring warrior mom!! xx

[Gatogorra]

Yay Cathy!