If your child has recently received an autism diagnosis, you're going to want some answers to your questions: Why? What can I do? What does this mean for his or her future?
You really won't know until your child's diagnosis is complete. If that diagnosis is based purely on a pediatrician's screening or a developmental evaluation, then it is only partial. You need to find out if there are any genetic or neurological components, seizure activities, or brain abnormalities contributing to your child's autism.
You need a referral to a pediatric neurologist.
Your pediatrician may not make this referral on their own, because regular pediatricians are not always aware of the extent to which autism and autistic-like conditions should be evaluated. If you are not given this option, you'll need to press for it. (Another potential fight, I know.)
We were lucky. Leo's pediatric neurology referral was part of his evaluation at the Stanford Autism Clinic. The clinic staff referred us to an on-campus pediatric neurologist. This is what that doctor recommended for Leo:
- A genetic workup to rule out any of the many chromosomal conditions that can lead to, be comorbid with, or mimic autism.
- A pediatric neurology assessment, including a general exam and family history.
- An EEG to monitor our son's brain for irregular electrical activity (some kids diagnosed with autism actually have seizure disorders).
- An MRI to look for structurual abnormalities in the brain, such as demyelination.
The results: of course my son had no chromosomal or brain structure abnormalities. He had a bit of irregular electrical activity, but it was consistent with patterns seen in other autistic people.
The tests didn't tell us why Leo has autism, but they did rule out many potential causes and typical physiological issues. With no answers, no more "but what if he has?," our faith about continuing to pursue 1:1 behavioral therapy -- the only proven method for helping kids like Leo -- was renewed.
Organizations like Generation Rescue proclaim to know why your child is autistic, and what you can do: let them rescue your child from autism! Unfortunately they are full of shit, though not intentionally. While a small subset of children may in fact be helped -- though there is not yet any unbiased evidence supporting this claim -- "We might be able to help your child a little bit if you're one of the lucky ones" doesn't rally frightened parents like "We can cure your autistic child!" does.
The bulk of GR's focus is not on detailed diagnoses or helping to gain skills, but on these biomedial and dietary "cures." I think most of the biomedical supplements Leo used to take were a racket.
Some do have merit. Leo still takes daily doses of cod liver oil, calcium, probiotics (though we're tapering those off), and autism-specific multivitamins from Kirkland Labs. We retained those only after consulting with a medical dietician about properly supplementing my son's self-limited diet.
And while I think there's no harm in trying the GFCF diet (even though it didn't work for us), you need to know that it is a lot of work, especially during the initial transition from a regular diet, and because so many autistic children have limited diets anyhow. You also need to be serious about it for at least one year.
Even before your child's autism diagnosis is complete, you need to decide how you're going to help your autistic child make sense of this world. Behavioral therapy is the best choice, and you can do it *even if* you decide to swallow Generation Rescue's very expensive pills. But if you have to make a choice, put your money (or your school district's money) on the approach based on evidence, not testimonials.