Monday, November 29, 2010

Book Review: Anthony Best

One of the hardest parts about the autism spectrum can be the feeling of separation it brings about. Adults on the spectrum may feel isolated and different than other people they live and work with. Parents of autistic kids can feel judged and criticized by other parents, especially those with easy children. Probably most difficult is the children on the spectrum, who often suffer through teasing, bullying or just being left out.

I think sometimes this isolation can be toughest for kids in mainstream schools, where their academic abilities are strong, but their social skills keep them from connecting with classmates. So often, the typical kids don’t understand what’s different about their autistic classmates and neighbors, so they might view autistic behaviors as mean or unfriendly. And the sad result is that the autistic kids get left out.


Education and communication can go a long way toward creating understanding, and books can be the best way to start that conversation. One sweet picture book I recently read is Anthony Best by Davene Fahy. In this simple book, Fahy explores the relationship between Anthony, a child on the autism spectrum, and his neighbor Hannah. The book illustrates many of the behaviors that might be puzzling or upsetting to neurotypical children, such as stimming behaviors, lack of eye contact, and communication differences. These behaviors are presented in a simple, non-judging way, which leaves plenty of space to have a conversation with young readers.

If you have a child on the spectrum, or with behavioral or learning differences, this book could be a good choice to present to neighbors or friends who want their children to learn a bit more about how differences don’t have to keep kids from being friends. And, Anthony Best would be a nice book for any teacher to have in the classroom.

Friday, November 19, 2010

Sexuality and Autism, Seminar in Baltimore

I’ve long been a fan of Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults as well as numerous articles on autism related topics. Zax’s organization, Zax Autism Consulting, is sponsoring a sexuality workshop for adults on the autism spectrum. Unfortunately it’s not local to the Bay Area where I work, but for those readers in Baltimore, MD, please consider attending. The presentation is in two parts, on the evenings of December 11, 2010 and January 15, 2011. For more information, contact Susan Howarth at (443) 676-5366 or successtransitions@comcast.net.


Thursday, November 4, 2010

Survey of Environmental Factors and Autism

I’ve noticed that parents of kids with special needs tend to have one thing in common: the strong desire to reach out and help out other parents dealing with the same issues. Maybe it comes from dealing with so many unknowns, or maybe it’s an understanding that so many of the current advances in treatment have come about because other, earlier parents also shared. Obviously, research is important in learning about a condition that has many more questions than answers.

In any case, here’s one opportunity to reach out, and it doesn’t take much time. Mischelle Miller-Raftery, a doctoral student in psychology at California Southern University, sent me an email saying that she is conducting a study on potential prenatal environmental triggers of autism.  Ms. Raftery is looking to survey at least 50 mothers raising children who have been diagnosed with autistic spectrum disorder (Asperger’s Syndrome, autism, and pervasive developmental disorder-not otherwise specified); and 20 mothers whose children have not been diagnosed.  She inviting readers to participate in this study. If you're interested in taking the survey the following link will take you to it: https://www.surveymonkey.com/s/3YBPGBT. There’s a contact number for Ms Raftery on the survey information page if you have any questions for her.


Friday, October 29, 2010

Book Review: A Regular Guy


The Autism Spectrum is so broad, the gifts and difficulties so varied, that people often tell me about how they feel alone, that their experiences are different than others, and no one understands what they’re going through. And, for those raising a child on the spectrum, there are ongoing challenges that can feel very isolating for parents as well as kids. It starts with noticing something concerning about a child, then moves to dealing with the medical professionals, getting the right diagnosis, finding the right services and the appropriate educational setting. Sadly, the typical world can be a harsh and judging critic along the way. And the difficulties don’t end in adulthood, because often special needs adults need individualized plans to ensure appropriate employment and living situations. Because each child is so different, it’s not a one size fits all situation.

That’s one way that books and blogs can be vital, as the link connecting individuals, showing people that they’re not alone and others might be going through a very similar struggle. A Regular Guy: Growing up with Autism , by Laura Shumaker is an excellent example of a book that helps create that connection for parents raising kids with special needs. Shumaker chronicles her struggles with the medical profession, helping her son find the right school setting, and to fit in with neighbors and friends. She’s honest about her family’s struggles, and compassionately attuned to the pain her son goes through as well.  The hardest parts of the book are those describing the many tough decisions Shumaker is forced to make, often for her son’s own good, but also hard for him to accept.


I recommend this insightful book for any parent dealing with those tough choices, and anyone feeling isolated or judged by their parenting situation.


Sunday, October 24, 2010

Parenthood and Misleading Divorce Statistics

I'm never quite up to date on TV viewing, since I watch everything off my DVR, so I'm commenting about a show from a few weeks ago. Parenthood, Season 2, Episode 4, which features a family dealing with a child's Asperger's, talked about the dreaded divorce statistic "80% of families with an autistic kid get divorced."

Fortunately, that's just not true. The 80% statistic is an enduring myth I see quoted frequently, but studies just don't back it up. The divorce rate seems to be about the same, whether a child is autistic or not. Even worse, the show quoted that the character's therapist told her that it was true. Lesson 1: Don't believe everything your therapist tells you! Lesson 2: Just because your child is autistic, doesn't mean you're doomed to divorce.

You can read an earlier discussion of this topic on my Divorce and Autism post. Please don't skip the show because of one bad statistic. Autistic kids are varied, and every family is different, but in general, Parenthood seems to do a pretty good job of presenting the joys and struggles of raising an autistic child.


Thursday, October 21, 2010

Parent’s Stories About Autism

I recently got an email from a researcher at Columbia University. They’re doing a study on parents of children with autism, and looking for parents to participate. Here’s an excerpt from their email if you’re interested.

“We are researchers at Columbia University's Institute for Social and Economic Research and Policy studying autism. We are currently collecting life stories from parents about their experiences in recognizing their child's autism, seeking professional help and navigating the available service systems. We think participation in this study would be of great interest to your readers, and we would like to invite you to write about our survey on your blog.


The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child's development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. And finally parents make different decisions in their quest for obtaining the right diagnosis and care for their child.  We would like to give parents the chance to tell their stories. Participation in the survey may help us understand the heterogeneity of autism as well as how children develop over time.


We are collecting life stories of parents of children who have autism through an online semi-structured survey at our website, http://www.understandingautism.columbia.edu. You could help our research tremendously by encouraging parents to participate in our study.”


Please consider going to the website and sharing your story.


Thursday, October 14, 2010

GRASP Board of Directors

GRASP, the Global and Regional Asperger Syndrome Partnership, is a wonderful support organization for individuals on the spectrum. I am a huge fan, and I wish they had a stronger presence here on the West coast. I refer to their services frequently in this blog, and often get news information from their monthly posts. The organization recently sent out a request for more individuals to join their expanding board of directors. At least half the board members must be on the spectrum themselves. If you’re interested in more information, or viewing the impressive credentials of their existing board, check out the GRASP website.