Thinking Person’s Guide to Autism, the first two chapters

12 Jan

When I first wrote about the Thinking Person’s Guide to Autism (TPGA) I mentioned I planned a series of articles. Multi-part discussions of books have been done before on Left Brain/Right Brain but usually for books that are, shall we say, less helpful than TPGA.

TPGA is a series of essays. Some are as short as two pages. Some up to 5 pages and maybe even more. The essays are arranged in chapters like “After the diagnosis: first steps” and “Autism–Adult Voices” and “Autism–Parent Voices”. This approach makes TPGA exactly the sort of book I find useful and I wish I had access to when my kid was first diagnosed. I love books. I love to read. But my approach to reading has had to change. In the past I’d read Robert K. Massie’s 928 page Peter the Great: His Life and World more than once. That was before kids. Kids, any kids, change your life in many ways. For those who find that they can still read lengthy books, you have my respect. I can’t. Being able to grab 5 or 10 minute to read an essay is more my usual approach these days. With TPGA you are also not stuck reading the book front to back. Want to read about “School and Education Issues”? Jump to that chapter. Want to read about “Therapies and Service Providers”? Flip to an essay in that chapter.

The introduction makes clear the scope and goals for the book.

The Goal of The Thinking Person’s Guide to Autism is to help you fast-forward past society’s rampant autism fabrications and negativity by providing clear, thoughtfully presented, balanced, and referenced information. We also want you to understand that autism awareness and acceptance are not merely noble but also necessary attitudes–and are separate matters from the autistic and other autism communities’ never-ending fights for medical, legal, social, and educational accommodation.

The first two chapters in TPGA are “After the Autism Diagnosis: First Steps” and “Practical Advice for Autism Parents”. Some essays can be found online and will give you an idea of the book. From the “After the Autism Diagnosis” chapter, here are a couple examples:

Squillo’sadvice in “What Now? Ten Tips for Families with a New Autism Diagnosis” is right on target. Here are some example topics: “Take a few days (at least) before making any important decisions” and “Keep a record of every interaction you have with schools, therapists, doctors, etc. regarding your child, even if it’s just a casual discussion in a hallway. Make copies of every questionnaire you fill out.”

Emily Willingham’s How Do People React When They Learn Your Child Has Special Needs? is likewise excellent.

Practical Advice for Autism Parents includes essays “Autism: Feeding Issues and Picky Eaters” by Judy McCrary Koeppen and Does Your Child With Autism Have a Daily Record? by Shannon Des Roches Rosa.

These are just examples but they make the point: there is a lot of information which is extremely valuable to parents who are trying to quickly come up to speed on subjects they probably have little experience with.

Also included in the “First Steps” chapter are two essays I would like to highlight. First is “Identifying and Avoiding Autism Cults” by Shannon Rosa. She speaks from personal experience for many of her points:

Families of children with new autism diagnoses can avoid cultish mistakes like ours if enough veteran parents reach out to them, and encourage them to choose logic over hype. We can help parents of newly diagnosed children with autism make careful choices and maximize limited resources. We can prevent them from taking their kids on expensive and emotionally-propelled journeys to nowhere.

Another excellent essay is “What Is Neurodiversity” by Mike Stanton. Mr. Stanton is one of those people I have never met but for whom I have an enormous respect. Mr. Stanton brings not only his views as a parent to the question, but some input from his child as well. “What is Neurodiversity” is an essay that could help a lot of people who have misconceptions about the topic as well as people new to the subject. Not to steal his thunder, but in case you don’t take the time to read the essay here is Mr. Stanton’s concluding paragraph:

I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.

My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.

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3 Responses to “Thinking Person’s Guide to Autism, the first two chapters”

  1. mcallen-doctor January 13, 2012 at 03:02 #

    Autism is still highly misunderstood in the mainstream society. We doctors should do a better job educating people about the real implication and the reality of this condition.

    TPGA is a practical guide to help us in this process.

  2. Shannon January 13, 2012 at 15:34 #

    Thanks, Sullivan. I particularly appreciate your emphasizing the book’s usefulness for busy people.

    I may have mentioned this before, but even we editors find ourselves recommending individual stories to each other, for guidance and support during tricky times.

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