When NOT to Rely on Expert Autism Advice

Autism is complicated. It's variable. There's no agreed-upon cause, treatment, cure, or prognosis for most people with the disorder. With so much uncertainty, many parents rely on information, direction, and recommendations provided by experts -- doctors, therapists, teachers, and researchers -- who should have more information that anyone else.

Of course, relying on experts is usually a good idea.

Sometimes, though, it isn't.

Here are some situations in which expert advice from the usual sources may not be as helpful as it should be.

1. You see issues with your child that may suggest autism, but your pediatrician pooh-poohs you.  Most pediatricians see children with various "delays" and parents with high anxiety at least 12 times a day. In the vast majority of cases, the "delays" are nothing more than a slight variation that fits right in with the bell curve of child development (Johnny should have 50 words but is only using 30, for example). As a result, many pediatricians tend to downplay developmental unless they are really significant and severe -- with the knowledge that most apparent delays will sort themselves out. If this happens to you, you may be seeing what your pediatrician can't see in a short visit -- and it is well worth your while to seek out a screening and/or evaluation. It can't hurt -- and it could very well help!

1. You're told to try a therapy that is not not supported by research or by medically-reviewed sources. It seems like everyone has a "miracle" treatment or cure for autism, and even trained therapists or teachers may suggest options that are unlikely to help (and could be expensive and/or risky). When that happens, stop and do your research before moving forward. Is this therapy really appropriate, medically safe, and affordable? If not, why would you try it?

1. Your "expert" clearly knows less than you do. Many autism parents spend a huge number of hours reading, attending conferences, and learning about therapies, programs, funding, schools, housing, and more. As a result, they are often better informed than "professionals" for whom these issues are of only theoretical importance. If you find that you know more about a therapy, a program, a school, or an agency than the "expert" you're relying on -- walk away (or share your sources and make your own decisions!).
2. The therapist you're working with makes claims he or she can't support.  Your child has been seeing an occupation, speech, play or other therapist for a year, and you can't see any improvement. You bring this up, and the therapist contradicts you.  "Oh yes," she says, "your child has come a long way." You ask to see assessments that support her statement -- but she "hasn't had time to conduct assessments." Now would be a good time to find a different therapist.
3. The professional you're working with has vague suggestions about what to do and how to do it. Your child is diagnosed by a professional who clearly knows all about evaluation and diagnosis. But when you ask "what should I do now?" he or she says "well, you'll probably want to look into behavioral therapy and your child probably needs a special school." When pressed, that's really all he/she can offer in the way of advice. When that happens, it's time to find someone who knows what's actually available and appropriate for your individual child, in your particular situation and location. That someone might actually turn out to be a parent volunteer with an an autism support group or parent organization.

1. The expert is not qualified in the field in which s/he's giving advice. Teachers are experts in teaching, but not in diagnosis. Diagnosticians may know little about speech therapy. If you're getting advice from the right person about the wrong thing, say thanks -- and find a specialist who actually knows the field!