Thinking Person’s Guide to Autism: The Autism Book You’ve Been Waiting For

20 Dec

I’ve already written about the Thinking Person’s Guide to Autism book. In reading the other discussions of it I found the press release, which I copy below:

Thinking Person’s Guide to Autism: The Autism Book You’ve Been Waiting For.

Redwood City, CA December 19, 2011 — “Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science

Thinking Person’s Guide to Autism is the book we wish we’d had when autism first became part of our lives: a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.

About the Editors

The Thinking Person’s Guide to Autism editors are Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg. Each woman writes, educates, and advocates within the autism communities. This project has its foundation in their collective parenting, science, education, and self-advocacy experience.

For more information or review copies of THINKING PERSON’S GUIDE TO AUTISM, please visit www.thinkingautismguide.com/p/press.html or contact our media relations department at 650.260.8742 or thinkingautism@gmail.com.

Publication information:
Available: on Amazon http://is.gd/TPGAonAMAZON and at Createspace.com http://is.gd/BUYTPGA
Paperback: 370 pages

Publisher: Deadwood City Publishing (2011)
Language: English
ISBN-10: 0692010556
ISBN-13: 978-0692010556

and, some advance praise:

“BOOK OF THE YEAR”
“Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science

“…what’s so valuable about the voices collected on TPGA. I think it’s the power of personal experience combined with hard-headedness about information. It’s the combination of warmth and realism: you feel the love the writers have for their kids (and other people’s kids) even while (or exactly while) they are telling the truth about how difficult it is be to be a parent to those kids, and how imperfect we all are at it.” — Caroline Miller, Child Mind Institute

“One of the best sites on the web for information about autism from parents, professionals, and autistic people themselves… this book is a must-have.” —Jean Winegardner, Washington Times

Judge awards Robertson Co. bullied teen $300K

20 Dec

Bullying of autistics is a topic that comes up a great deal. Just last week a gang of nine youths who viciously beat an autistic teen was let go without any punishment. In another case, an autistic student was awarded $300k, the maximum allowed by law, for a bullying case.

Before anyone sees this as a victory, the kid was left legally blind in one eye, the family incurred $90k in medical expenses and it took years to win the judgement. From a story on WKRN-TV in Nashville, Tennessee (U.S.):

As a seventh grader at White House Heritage School in 2006, Jacob Gentry was hit in his left eye with a textbook when his teacher left the classroom, causing him to become legally blind in that eye.

It seemed like a minor injury at the time, but it required four surgeries.

Jacob’s attorney, Jonathan Street, told Nashville’s News 2, “There’s a lot of pain that you go through, his medical bills were over $90,000.”

The Thinking Person’s Guide to Autism: The Book

19 Dec

I was fortunate to attend IMFAR (the International Meeting For Autism Research) this year. One big part of what made that experience valuable to me was the opportunity to spend time with Shannon Des Roches Rosa. Shannon’s writing can be found many places including online at Squdalicious and Blogher, and in print in the book My Baby Rides the Short Bus (a great interview about the book can be found on the KQED website).

At one point at IMFAR I posed a problem I saw in much of the online discussion I often am involved in: that while we can and do effectively counter much of the misinformation that permeates the autism-parent discussion, we don’t have much to offer people. She paused for a second, just long enough for me to realize that “we” didn’t mean her, and told me that this was the reason for The Thinking Person’s Guide to Autism and that the book was in the works.

The Thinking Person’s Guide to Autism has been a very successful website with excellent discussion for some time now, and now the book is available. You can buy it on Amazon. From CreateSpace you can read the short blurb:

Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autistics, autism parents, and autism professionals

Having read the first two chapters I agree with the statement above. It is a resource I wish I had when my kid was diagnosed. Sure, I’d have loved to have read this book before and been better prepared.

The book doesn’t pull punches. From the experiences of the adult autistics who wrote many essays to those of the parents,

From the introduction:

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

the essays form a guide. They are not telling people what to do, but providing good information to help one make decisions.

In the past Left Brain/Right Brain has reviewed some books in detail, chapter by chapter. I plan to do this with TTPGTA (The Thinking Person’s Guide to Autism).

Tags:

From a comment on a LA Times article to a tiny Streisand effect

16 Dec

I recently wrote about a comment left on the Los Angeles Times website. A comment which really bothered me. Others have discussed this comment and one of those people, Liz Ditz, has been the subject of a rather nasty attack.

Often when a topic is discussed on multiple sites you can count on Liz Ditz to compile a list of links. Given that in this case she isthe one under attack, I’ve decided to provide the links I am aware of:

Here are weblogs and other sites which discuss reactions to the comment:

Here at Left Brain/Right Brain

Ignorance adds to stigma, again.

Liz Ditz, I speak of dreams:

Attorney Claims Autism Parents Are Just In It for the SSI Gravytrain

A Note About Accusations That I Have Been Cyberstalking, Bullying, Harassing

and

Supplemental Security Income (SSI): A Voice of Experience

From Colorado Moms:
An open letter to Sue

Caffeinated Autism Mom:
Getting rich off an autism diagnosis

From Harpocrates Speaks
How not to make a fool of yourself

From def shepherd:
In Which A Comment On An LA Times Autism Story Triggers A Shitstorm

and a Storify post by Anarchic Teapot of the over 100 tweets sent in what appears to be an implementation of “the best defense is a good offense”

Additions:
Calladus at Calladus: Internet Insanity Eric Shephard at defshep LA Times Autism Story Comment Continues

Gang of nine who beat autistic teenager so badly she was off school for 10 months escape without ANY punishment

16 Dec

From the Mail Online: [warning, graphic photograph] Gang of nine who beat autistic teenager so badly she was off school for 10 months escape without ANY punishment

Here is the first paragraph:

Sophie Russell, 16, was punched about 20 times in the face
Four girls and five boys let off and police handed just one of the mob a caution

A gang of nine yobs who beat an autistic teenager, punching her about 20 times in the face and forcing her to take 10 months off school to recover, have escaped punishment.

Sophie Russell, 16, was attacked by the teenage yobs who left her seriously injured with a broken nose and shattered face at her school in February.

But the gang of four girls and five boys were let off after police only handed one of the mob with a caution.

More details, including a photo, are available on the link above.

If, however, you are looking for a good explanation why these youth did not face any charges, you won’t find them there. If you can provide a good explanation I’d appreciate hearing it.

Epilepsy Foundation Touching Lives fundraiser

15 Dec

Below is a letter from the Epilepsy Foundation discussing their Fundraiser.

I know you are extra special. You have compassion for people with epilepsy. You’ve shown it through your support of the Epilepy Foundation. Thank you so much.

I want to tell you about another way you can touch even more lives this holiday season. You can make a donation in honor or memory of a loved one.

It’s a gift you’ll feel good about giving. It’s a gift that will help us find a cure…And until that day, make living with epilepsy a little bit easier.

We have several beautiful cards for you to choose from that we can send to your honoree or the person you choose. You can see some of the cards below.

20111214-221326.jpg

Click here to make a gift in honor of a loved one.

It will make the perfect gift for someone special. It will touch so many lives and hearts.

Thank you and best wishes throughout this season of joy and giving.

Warm Regards,

Ellen L. Woods
Vice President, Development

Advocates Push Federal Law Allowing Same-Sex Parents to Adopt

15 Dec

In a recent article, Advocates Push Federal Law Allowing Same-Sex Parents to Adopt

I found this section particularly interesting:

About 2 million children in the United States are being raised by LGBT families, according to the recent report. The study said 3 percent of foster children nationwide live with LGBT parents.

Gay and lesbian parents are raising 32 percent of foster-care children with special needs, Hecht-McGowan said.

32% of special needs kids in foster care are being raised by gay and lesbian parents.

Autism Frequently Missed in Children With Epilepsy

14 Dec

A recent study presented at the American Epilepsy Society annual meeting suggests that developmental delay in general and autism in specific might be undetected in a large fraction of children with epilepsy.

In Autism Frequently Missed in Children With Epilepsy, Allison Shelley of Medscape writes:

In a study presented here, the investigators tracked children younger than 5 years seen at an epilepsy monitoring unit and a ketogenic diet clinic for about half a year. They asked parents of the 44 children to complete the Ages and Stages Questionnaire, as well as an autism screening tool.

Most of the children (77%) screened positive for developmental delay; of these participants, a strong proportion (36%) had autism.

More than a third of patients had not been previously diagnosed as having developmental delay or autism and were referred for confirmatory evaluation.

Here is a video from the American Epilepsy Society discussing this:

The study is relatively small and is, to my knowledge, as yet unpublished. But it does present a potentially important idea that people with epilepsy should be screened for autism.

Ignorance adds to stigma, again.

12 Dec

The Los Angeles Times has started a new series on autism. The opening piece is Autism boom: an epidemic of disease or of discovery? It’s a tough piece to write: how to discuss the fact that a big factor behind the rise in autism diagnoses is sociological (which is accurate and good to get out there) without fueling the “parents just want to milk the system” mindset (which is inaccurate and stigmatizing).

I wanted to write about the piece but, instead, a comment has caught my attention. Sue Basko who, by her comments, is rather ignorant about autism and the services/supports available, left the comment below:

Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare.

The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this “epidemic.” Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.

When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.

I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.

Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism.

In a recent comment on her Facebook page, she writes:

THIS MAy not be a big deal for others, but my blog got 800+ hits in the past 16 hours. It means so much to me that people read what I write.

Given this, I am bringing what she writes to a larger audience: the readership of Left Brain/Right Brain. In doing so I am breaking a good rule: don’t blog (or tweet) while angry.

I find it ironic, to say the least, that someone who is actively contributing to the stigma of autism is using this as part of her argument.

Somehow I have missed out on the cash cow that my kid presents to me. I am not able to “live off the payments” that are offered. Heck, I’ve never even been offered SSI (Social Security’s “supplemental Security Income”).

Ms. Basko would be well advised to re-read the article she commented upon. Here’s one segment I would highlight:

Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.

Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.

The rise in autism diagnoses in California has occurred in wealthy areas (for example, West Hollywood), urban areas, and less so in racial/ethnic minorities and people in rural areas. Hispanic immigrants, legal or not, have actually avoided seeking out services due to Proposition 187.

ASAN Seeks Autistic People as Federal Grant Reviewers

12 Dec

The Autistic Self Advocacy Network (ASAN) is looking for Autistics to assist in reviewing grant applications for federally funded research. This follows their Symposium on Ethical, Legal, and Social Implications of Autism Research

The announcement is below:

The Autistic Self Advocacy Network’s Symposium on Ethical, Legal, and Social Implications of Autism Research, funded by the Administration on Developmental Disabilities, was a huge success. The symposium video will be made available in the coming weeks with captioning. We’d like to thank our co-sponsors, the Harvard Law Project on Disability, the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics and the UNESCO Bioethics Chair, American Unit for helping to make this event possible.

Our conversation was broad and wide ranging. Perhaps the most interesting characteristic of the Symposium was the people that came to the table. Our participants – split evenly between self-advocates and researchers – identified a wide number of ways to help advance the inclusion of Autistic people ourselves in the research process. From Community Based Participatory Research processes to greater inclusion of Autistic adults on IRBs and Grant Review panels, a number of actionable next steps emerged from our discussion. ASAN will be following up on this through a series of targeted policy briefs and collaboration with our federal partners to make those ideas reality.

One of the key issues to emerge out of our conversation in Cambridge was the inclusion of Autistic people and other people with disabilities as grant reviewers on federally funded grants. In response to our symposium, several key federal funders have offered to work with ASAN to identify Autistic adults and other people with disabilities interested in serving on forthcoming federal grant review panels.

As a result, we’re issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume. Resumes can be sent to info@autisticadvocacy.org with the Subject line GRANT REVIEW.

← Older Entries
Newer Entries →