Review: First 100 Days Kit from Autism Speaks

Autism Speaks, America's largest nonprofit dedicated to autism, has produced a hefty "kit" for parents new to autism. It is, in fact, an introduction to autism -- but it's far from the best available.

Much like a pregnancy or wedding guide, this kit offers the reader a week-by-week itinerary for managing a child's autism diagnosis. In addition, it offers general overview information about autism, autism diagnosis and screening, treatments for autism, and more. The kit does include information about a range of treatments, though biomedical treatments are not among them.

If you so choose, you can have the document personalized based on your location (Autism Speaks has accumulated a limited database of information about local therapy providers and other useful information).

Resource sections at the end include a list of websites to consult (this one is not included!), a glossary, forms, and more.

This kit was designed by a large group of professionals and paraprofessionals -- and a hardworking designer. As a result, it sports a long list of introductory credits, a great deal of white space, and quite a few decorative elements. Much of the look and feel, not surprisingly, is based around Autism Speaks' logo. The kit's 3-month, week-by-week is certainly unique, as is its focus on services offered by or created by Autism Speaks.

Another special feature of this kit is the large collection of forms and organizational tools at the back of the packet. These are designed to help parents put together information about their children, their therapists, and other important data.

Because it is linked to a suite of other Autism Speaks services and providers, the kit could be seen as an introduction to Autism Speaks.

The first section of the kit deals with general information about autism and autism diagnoses. Since the kit is intended for parents who have already received an autism diagnosis, my sense is that most of this basic information will be redundant. In addition, the majority of the information is already available to parents in other locations and formats. What other materials will not include are the constant self-congratulatory references to the work of Autism Speaks, which turns up in almost every paragraph.

That said, the information provided seems solid and accurate. In addition, the inclusion of information about symptoms not usually described or discussed on other sites or in most books is helpful. Mention is made, for example, of sensory issues, gastrointestinal issues, seizure disorders, and so forth.

Information about treatments is similar to that found in many, many other resources. It includes a quick overview of each (non-biomedical) treatment, quickly mentions the Gluten Free Casein Free (GFCF) diet, and suggests that parents select a treatment based on their child's learning style. If only it were that easy to select, implement and pay for therapy.

For parents who really want an easy-to-read, in-depth overview of autism, first steps to take, managing life with autism, and looking ahead, I would highly recommend taking a look at the book Autism for Dummies. This straightforward publication answers parents' burning questions, and provides solid direction. What's more, it's written by an adult with autism (Steven Shore).

At the end of this kit is a week-by-week itinerary for action. It is this section that I liked the least. Rather than providing clear and helpful steps (something that's available in few locations) it makes vague and general suggestions -- yet the checklist format makes each step look as simple as "pick up the tuxedo."

By week four, in addition to scheduling evaluations, researching and selecting treatments, "building a team," finding a support community, knowing your legal rights and understanding your insurance, getting services, setting up a phone log, starting a video record and more, the checklist recommends you plan a getaway with your spouse, start a "joy museum" with your child's siblings, and "do something for you." Unfortunately, this absurdly ambitious schedule assumes a parent who is able to completely dedicate her time to this process with no other obligations to interfere -- coupled with an extraordinarily supportive and compliant professional community. Since the typical wait for a full evaluation can be up to 10 months, an eight-week schedule makes little sense.

Any parent who finds this checklist less than overwhelming should certainly be writing a book of his own.