What To Do When the Autism Diagnosis Arrives

Every family's autism odyssey is different, but most start with variations on three themes. There's the sense parents get as they observe their child that something is not quite typical about his development. There's the quest to figure out what is going on (and the hope that it's just a temporary blip). And there's some form of evaluation -- from a doctor, from a state early intervention agency, from a school district representative -- that leads to an autism spectrum disorder diagnosis.

Whether that diagnosis is classic autism, Pervasive Developmental Disorder -- Not Otherwise Specified (PDD-NOS), or another band on the autism spectrum, the instant and urgent mission of every family is to figure out what to do next.

Autismvoice.com, a website created by Sandra Sinclair of New York State, has created what she calls a mini-course to address this question. The outline of the course is clear and well defined and worth reading -- with the knowledge that Ms. Sinclair presents information informed by her experience parenting her young son with an autism spectrum disorder. This means that she clearly prefers certain teaching approaches such as Verbal Behavior Analysis over others (such as Applied Behavior Analysis, or ABA) and injects her views into her presentation. Even with this bias, the kind of information presented in this mini-course is useful, thought-provoking and worth reading. It comes with links to the Autism Society of America, the Wrightslaw "yellow pages for kids with disabilities" website and the Doug Flutie Jr. Autism Foundation, which have valuable online resources.

To get the course, you need to register by e-mail and then receive seven installments over the course of a couple of weeks. Here's a general outline of the course below (the e-mails come with much more information):

1. Understand the symptoms of autism, using the American Psychiatric Association Statistical Manual.

2. Get an evaluation, if you need confirmation of the diagnosis. (Editor's note: get a medical doctor's evaluation in writing.)

3. Educate yourself about various intervention options, school programs and home-based services options.

4. Examine whether you need an advocate or attorney. (Editor's note: make sure you get references from other families about the people you consider engaging.)

5. Get support. Parenting a child with autism is stressful and can lead to problems like depression. Find a support group, or make sure you get counseling help if you need it.

6. Prepare for a meeting with your school district to talk about your child's Individualized Education Plan (IEP).

7. Look for appropriate teachers and therapists.

The Autismvoice.com project is impressive for its clear public service mission, and Ms. Sinclair has built a library of podcasts where she explains her views on different therapies, for example. Her website also contains short pieces that try to get parents to acknowledge their difficult feelings -- like embarrassment in public when an autistic child has a tantrum. What's great is it's all done in a spirit of helping other parents also working to meet this life challenge. To see more clearly as they begin the odyssey.