Thursday, December 6, 2007

An Autism Diagnosis - What now?

I think that the biggest thing a parent needs at the time that their child is diagnosed with Autism is hope. My developmental pediatrician handed me a list of books that all made me want to sob. That is why I appreciate the Jenny McCarthy book so greatly - it makes you cry with hope. (It also helped some people in my life see that everything we are doing for my son is not crazy.)

What gave me hope last year was finding a game plan. I started by googling and came across the Autism Research Institute website. I found a "DAN" doctor who was fairly close by and took Mr. C to see her. She had us wait for 20 minutes (which is fun with a 2.5 year-old) and was nice but extremely scattered. She told me to do gluten free- casein-free, feingold and low oxalate diets all at once (I barely knew what they were), handed me a jumbled pile of copied notes and shopping bag full of test kits and sent us on our way. I left her office and everything stalled out. I knew from my own experiences with autoimmune disease and diet that it had to help. We had also figured out that our son was completely intolerant of milk. He'd get the red, papery cheeks and throw it up, even though he drank it as much as he possibly could. Like an alcoholic would drink scotch. And even with this knowledge, I did not know what to do. All I needed was a list of what we actually COULD eat!

The hope really started when I found the Generation Rescue website. I found a rescue angel in my area, and though we have never met, she has helped point me in the right direction in so many ways. Her first "rescue" was to share that she had also had an odd experience with this same doctor and that I should go see a different DAN. There are huge differences between DAN doctors...just as there are differences with all doctors, so don't give up if you do not feel confident about the first one. We now drive 2 hours to the East Bay and though we do not agree about everything she recommends, she works with us and it is worth it.

The second "rescue" item was pointing me to the Yahoo Autism-Mercury web boards. This is where I got my big "biomed" education and found other boards such as Pecanbread, MB12Valtrex and GFCFKids. I also read the chelatingkids2 board. Even if you never chelate or see a DAN doctor, you can learn a lot of helpful information from these boards.

The third "rescue" was turning me onto a behaviorist and advocate. Even though we do not do official ABA, we have an aide from the school district who works with my son for 26 hours per week and there is no way we would have her if I had not met the advocate. She and the behaviorist still continue to provide me with good resources.

All of these thing gave me hope, focus and direction. I learn more and more every day, and my son improves every day. It is a slow process, but we are getting there.


Tori said...

Good for you! You haven't posted in a while; how's it going? We started GFCF in October...

Tori (

Emily said...

I'll put up another post today with an update...I didn't know anyone was looking at the blog! It is very exciting!
SCD is good so far, but I have never cooked so much in my life! And the dishes! Ugh!
My son seems good though...and he is handling all of his biomed stuff well, which is awesome. I think the diet really helps keep the yeast away.