The American Academy of Pediatrics will publish Autism Spectrum Disorders: What Every Parent Needs to Know on October 1. (You can pre-order the book at the Amazon link above.)
The first few weeks and months after a child's diagnosis with any disability is bewildering, but I think especially so for autism. There's so much pressure to do something, anything, now. The myth of the "window of opportunity" to really make a difference in your child's future is particularly pernicious and panic-making, as is the "autism cause of the day" drumbeat.
I had two reactions to the AAP's calm, authoritative guide:
- It is a useful antidote to the bewilderment and pressure, in a format that harried parents can easily absorb, and
- It is terribly flawed, in that the editors ignored (or are ignorant of) the many helpful insights of autistic adults. The book is much the weaker for the absence of autistic voices.
Topics covered include:
- A short, non-technical introduction to the history of autism, some typical early signs, and how it is diagnosed. I particularly appreciated the clarification of differences and similaries between autism, Asperger's, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
- A short and non-technical review of what is now known (and not known) about causation. Particularly valuable is the discussion on why vaccines have been excluded as a cause.
- More detail on signs of autism, common health problems, and how autism is diagnosed. Particularly valuable are the lists of milestones
- How to develop and implement a management plan that meets your family's needs and your child's needs, including behavioral and developmental treatments. Particularly valuable is the discussion of the various types of therapies and therapists.
- An introduction to the Individuals with Disabilities Education Act (IDEA) and the autistic child in school, both therapies and challenges. I found the short but pertinent discussion of IDEA a good introduction to the complexities of special education law.
- Other approaches to autism: medication and "complimentary and alternative medicine" (CAM). I found the CAM discussion very helpful, in that it gives parents a grounding in how to evaluate the safety and efficacy of the myriad "cures" and "treatments" for autism available online.
- Defining "the medical home" and how to build and maintain a care notebook. The section on how to prepare for medical and dental visits was particularly well-done for parents of the newly-diagnosed.
- How to find and afford services and supports in your community. Particularly valuable to families with a new diagnosis are the guides to government financial assistance.
- Autism in adolescence and adulthood: creating the transition plan and more. One wise autism parent said that "planning for adulthood begins in kindergarten". The brief roadmap in the book will help parents of young children to begin to think long-term.
- Strategies that other families have found helpful for common problems in autism. These few vignettes illustrate some creative solutions to sensory issues, troubles with transitions, and the like.
- Childhood autism and its effect upon siblings and family life. I particularly appreciated the passage on resilience.
- Research directions: causation, prevention, and interventions. The section on evaluating effectiveness of interventions is a particular interest of mine.
- How to advocate for autism. The editors suggest that all parents could be advocates, in their own way.
Now for the criticism. The book apparently had virtually no input from autistics. The front matter lists "parent reviewers /contributors", but not "autistic reviewers/contributors". Yes, this is a book about autism in children, but autistic children grow up to be autistic adults. Leaving autistic voices, in favor of parental voices or professional voices, out implies that the editors believe that autistic adults have nothing useful to say,
The book lists 11 "autism champions". Of those,
- 3 are autism researchers (Lord, Mason-Sears and Myles)
- 7 are autism parents (Pingree, Resnick, Singer, Smith, Sneid, Unub, and Wood)
- 1 is identified as autistic (Tim Page)
There are very many topics on which autistic adults have written insightful commentary. Here are but a few pertinent examples, from hundreds or even thousands of posts.
- Judy Endow, MSW: Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Autism Spectrum Disorders
- Julia Bascom: Quiet Hands (on the emotional and cognitive costs of some behavioral therapies) and a parent's response Thoughts on Quiet Hands
- Corina Becker on 25 Things I Know as an Autistic Person (especially on transition to adulthood)
- Ari Ne'eman on The Value of Autistic Community
- Not only do autistic people date, they are parents:
(Disclosure: I was sent a review copy of this book.)