Wednesday, February 15, 2006

Five-Star Autism Reading

Christine (of Day Sixty-Seven) wanted to know which autism books rate five-stars in my book. Since there are dozens of books that I haven't yet read, both from the stack on my shelf, and also pouring out of the publishing houses, this may be premature. But here goes . . . a 5-star list to date . . .

Three favorite autie parent memoirs, not counting the blog memoirs that many of you are writing:

The Siege: A Family's Journey into the World of an Autistic Child
by Clara Claiborne Park

What is most dazzling about Park's 1967 memoir is that she bucked the medical wisdom of her time—she lived through the era of the "refrigerator mom" theory—and kept her daughter at home with their family. While the psychiatrists of the time were telling her that it was Clara's supposedly cold and impersonal nature that was creating her daughter Elly's autism, Park—with a trail blazing courage—quietly ignored them. Trust me, there is nothing cold and impersonal in this book. It's a classic.

Exiting Nirvana: A Daughter's Life with Autism
by Clara Claiborne Park

In the 2001 follow-up to The Siege, we learn how Jessy (aka Elly) fared with the incredible support provided by her mom, her family and their community. She is an artist with a three-year waiting list for her work. Here the happy ending is not a "cure"—but a life a meaningful life in the midst of community.

Elijah's Cup: A Family's Journey into the C0mmunity and Culture of High-Functioning Autism and Asperger's Syndrome
by Valerie Paradiz

Paradiz captures not only the story of raising her autistic son Elijah, but also the emergence of the autism rights movement, and the implications of that movement for how we see our children. Rather than seeing them as "damaged" or "defective" or "diseased," Paradiz models how we can elaborate and celebrate their differences and find ways to create robust and expansive communities for them, for ourselves and for each other. After reading book after book about curing-saving-rescuing my child (titles that are probably familiar to you) Paradiz offered a new way of thinking about autism—through a social justice lens. And if that weren't enough, she writes beautifully. This book is a gift.

Then there are the many books by autistic authors that have come out in the past several years. Donna Williams is probably the most famous autistic individual in the world. With nine published books—many of them bestsellers—she could take almost every spot in a top ten list. I've read about half of them, and found them all helpful:

Somebody Somewhere: Breaking Free from the World of Autism

Like Color to the Blind: Soul Searching and Soul Finding

At the moment I'm reading two of Williams's text books: Exposure Anxiety: An Exploration of Self-Protection Response in Austim Spectrum and Autism and Sensing: The Unlost Instinct, and expect that they will be equally helpful in understanding Sweet M's relationship to the world. And I'm looking forward to reading her newest memoir, Everyday Heaven: Journeys Beyond the Stereotypes of Autism.

Like Donna Williams, Temple Grandin is a renowned autistic woman with several bestselling books, among them, Thinking in Pictures: And Other Reports from My Life with Autism and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior (written with Catherine Johnson).

While working on this list I was surprised to realize that I haven't yet read her earliest book: Emergence, Labeled Autistic. I think I'll try to pick up a copy today. Also, Grandin's mother, Eustacia Cutler, has a book just out called A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story, and that book is definitely on my "to read" list.

Autism and the Myth of the Person Alone, edited by Douglas Biklen with contributions from a variety of autistic individuals, including Richard Attfield, Larry Bissonnette, Lucy Blackman, Tito Rajarshi Mukhopadhyay, and Sue Rubin. Reading about the world from the perspective of these autistic writers has been as helpful as anything I've read by a medical professional.

Finally, two books that I love because they've helped me understand the implications of the social constructions of disease and disability . . .

Life As We Know It: A Father, A Family, and an Exceptional Child, by Michael Bérubé. As a professor of comparative literature and cultural studies, Bérubé turns his knowledge of these fields to the task of understanding life with his Down Syndrome son. That might sound boring, but it's not. Believe me, it's amazing. He covers everything from our aversion to "feeble mindedness" to the problem of prenatal testing and the elective termination of Down Syndrome pregnancies.

The Spirit Catches You and You Fall Down by Anne Fadiman. Fadiman tells the story of how cultures collide—with disasterous results—over the body and soul of a young Hmong/Laotian girl with epilepsy. Among the Hmong, Lia Lee's epilepsy is viewed as a sign of her special connection with the spirit world. But in the Merced, California community where her family lands as refugees from from the disasterous debacle of the American-Indochinese War (aka the Vietnam war), Lee's epilepsy is viewed as an illness to be treated. When the medical community requires that Lia be removed from the loving care of her family, calamity results. If you ever had any doubt that diseases are social constructions, then read this powerful account.

• • •

That's my current list of favorites, with an emerging list of others to read. What are yours?

Note to readers: If you click on the text links for titles, you'll land at Amazon. If you click on the pictures, you'll land at Barnes and Noble. Some readers don't shop at Amazon because CEO Jeff Bezos gives so much money to the Republican party. And some readers don't shop at B & N because CEO Leonard Riggio supports the Democrats. You pick. Personally, I like to use the public library.



Diamond said...

I've seen Temple speak twice now, and she is absolutely amazing!!!!!

Christine said...

Boy, ask and ye shall receive!!

Thanks so much for the list. I've only read the Bilken book (which I agree deserves 5 stars) so it looks like I've got some good reading ahead.

Now that I'm finding the right people to ask for references I am finding the kind of literature that I NEED. But I'll tell you, in the beginning it was depressing. It is criminal that parents are confronted by such a dismal picture in the beginning.

And I'm with you: inter-library loan is the way to go!

Susan Senator said...

Ouch! (pretty shameless of me, I know, couldn't resist...) :-)

Anonymous said...

And I thought I've read a lot of books on autism. I've only read one on your list. Time to get the library card out.

kristina said...

Park's books are my favorites. I reread Exiting Nirvana regularly. Do you read Bérubé's blog?--some good posts recently on disability (and he is a gracious man--have exchanged some emails and spoken to him at a conference).

And, am teaching The Spirit Catches You for Cultural Anthropology! I can hardly wait.

I'd also add Nick Hornby's About a Boy.

MothersVox said...

Hi fellow autism readers! Susan, ohmygod, sorry. I haven't read your book yet—but it is, indeed, on my list—and you'll be happy to know that the NYPL has 8 copies on order! I shall be one of the very first to reserve one! Or maybe I'll just break down and buy one! I'm so glad you're being shameless!! ;)

Christine, one of the worst things for me at the beginning . . . so say, about five years ago . . . was not being able to find anything that spoke to my experience as an autism mom. In part that was because M's PDD-NOS didn't look like Kanner autism, so the books that were about rescuing your child (Let Me Hear Your Voice, for example) didn't make that much sense to me.

But now, with the autism blogs, I feel as though there is a whole wealth of experience and collaboration available. Three cheers for IT.

Back in the pre-autism blog days, one book that also helped me was Bruce Roseman's A Kid Just Like Me: A Father and Son Overcome the Challenges of ADD and Learning Disabilities. Since M's Dx wasn't clear, and since we already have one adult ADHD Dx in the family, I started out with the ADHD books. Roseman's book was compelling, and I'd forgotten about it because it's not an "autism book."

There is also a book called The ADHD-Autism Connection: A Step Toward More Accurate Diagnoses and Effective Treatments by Diane Kennedy, et al. It's not a lovely book--it's informational, as the title suggests. But it's very helpful in sorting through the Dx quagmire.

And Kristina! I didn't know Bérubé had a blog. I'll check it out. Thanks for the heads up on that! And didn't know we could do accent aigu in blogspot. Cool. I'll correct my post! Can't wait to hear what your students think about The Spirit Catches You . . . It's such a beautiful book! I don't know About A Boy, so I'll add that to my list as well.

Wow, happy reading one and all! Now I just wish I could sit around all day and read!

kristina said...

The Spirit Catches You brings it all together for me, almost. NorCal/AsAm/Cog Dis/Medical/Spiritual. And an amazingly gripping story.

While I have lot of critiques of it Let Me Hear You Voice changed ours and Charlie's lives. He wouldn't be where he is without ABA. I do think Maurice did a disservice by associating "ABA" with "recovery." That is several posts, if not a book, in and of itself.

Yes, check out Michael Bérubé. I can't check in as often I wish but not a bad way to keep one foot in the MLA (such as it is or isn't!).

Mom to Mr. Handsome said...

Oh my! So many MORE great books to read! Thanks for the heads up. I don't know when I will find the time, but I am looking forward to reading quite a few books that are on your list. Well, after I finish the three I am reading on Autism

Anonymous said...

Not Even Wrong by Paul Collins, which is one part parent memoir, one part history, and one part interviews or information on current things.

I picked it up for a paper on art by Autistics last semester and I think I've read it about 20 times since then. It doesn't hurt that it's one of those where you can almost literally open to any page and find something interesting (The Chromatophone! A piano made to release scents!). Also, it's very honest about the autistic-type traits that Paul and his wife share. (He goes into things like his hearing, his difficulty changing tasks, and the spectacular meltdowns he used to have in school.)

Jay said...

Hi, a friend linked me to your blog. I'm an adult with Asperger's with a Master of Social Work who has worked in disability rights since high school.
I've read almost all the linked books, and strongly agree they're all fantastic.
A few more recommendations:
-"The Everything Parent's Guide to Children with Asperger's" by William Stillman seems an unlikely candidate, but it's an excellent primer on understanding and positive affirming responding to autism in kids by a professional with Aspergers. It's written from a "different way of being" paradigm.
For adults, "Sex, Sexuality and the Autism Spectrum" by Wendy Lawson is a comprehensive book that is GLBT-inclusive. It's a little quirky, but the information is helpful and is presented in a way that works for autistic heads.

Anonymous said...

thank you so much for that wonderful list! i am jotting them all down and logging onto the local interlibrary loan site.

MothersVox said...

Many thanks to everyone for adding their own to this preliminary list . . . Given that there are so many books and so little time it is fantastic to have the suggestions and summaries of other insightful autism community folks!