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.
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 Autismpost. 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.
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.
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.
Many teens and young people are dealing with issues involving their sexuality, as well as Asperger’s or other Autism Spectrum Disorders. High school and middle school can be hard for everyone, but for those who feel like they don’t fit in, it’s especially tough. School bullying is rampant, and often the targets are just those kids who are different, such as the kids on the autism spectrum, or lesbian, gay, bisexual, transgender, or questioning (LGBTQ) kids, and maybe most of all, the kids who are dealing with ASDs as well as LGBTQ issues.
Sadly, there have been a number of tragic deaths recently of LGBTQ young people who’ve been harassed by classmates. There are so many resources available to anyone who’s being bullied, or feeling picked on, or different, or thinking that that life won’t get better.
One excellent resource is The Trevor Project, which the site describes as “The Trevor Project is the leading national organization focused on crisis and suicide prevention efforts among lesbian, gay, bisexual, transgender and questioning (LGBTQ) youth. If you or a friend are feeling lost or alone, call The Trevor Helpline (866.4.U.TREVOR), 24 hours a day, seven days a week.”
Related to the Trevor Project, is the It Gets Better page on You Tube. Both celebrities and ordinary people have submitted videos of their own experiences in dealing with school, bullying, and especially bullying about sexuality. Project Runway’s Tim Gunn, Glee’s Chris Colfer (Kurt), Neil Patrick Harris, Perez Hilton, and others have recorded messages.
Please don’t think that you should struggle on your own with issues regarding sexuality, whether you’re on the autism spectrum or not. And none of these issues mean that you can’t go on to have a successful, happy life. If you’re feeling isolated and different, please use these resources to find support.
Dad’s in Heaven With Nixon is a touching film about a close, multigenerational family and their struggles with mental illness, alcoholism, and autism. In spite of all these difficulties, the family’s bond shines through the film. The real beauty of this documentary is the loving relationships it shows between Christopher, a gifted and successful artist with autism, his aging mother, and his brother and the film’s creator, Tom Murray. Christopher, born in 1960, suffered oxygen deprivation at birth and was later diagnosed with autism. Certainly, the 1960s and 1970s were not a time of great information about helping those with autism, and Christopher underwent a number of therapies. His mother talks about how she was uncertain of how these therapies were working, but that she did determine that loving her son would help him, and how she and all the siblings worked together to encourage his development. In seeing the now adult Christopher it’s apparent how successful she was in her efforts. Christopher Murray is a charming and capable adult, living on his own and successfully holding two jobs as well as succeeding as an artist. He seems to have continued with his loving relationship with both his mother and his older brother.
The alternate story woven through the film is of the Murray’s father and grandfather. Through old films and family pictures, Tom Murray narrates the story of the men’s difficult lives, including chronic drinking, mood swings, financial difficulties and probable depression and bipolar disorder. It’s an intriguing juxtaposition with the story of autism in comparison. So often, parents despair of an autism diagnosis, and it’s refreshing to see a representation of a happy and successful adult on the spectrum, and how he contributes so positively to his family.
The film is presented regularly on Showtime. You can get more info, and view Chris Murray’s artwork on the film’s website.
Patricia Robinson MFT
I'm a licensed therapist in Danville, California and a coach for Asperger's and ADHD nationwide. I work with individuals of all ages who have special needs, like Autism Spectrum Disorders, ADD, ADHD, and the family members and partners of special needs individuals.