I love reading and watching stories of young adults finding success in life. The latest comes from comedian D. L. Hughley whose son Kyle was diagnosed with Asperger’s Syndrome as a child. Kyle is 26 now, a college graduate and he’s working. But there are still new triumphs to celebrate. Listen to Hughley talking about the latest one with Oprah Winfrey.
Our son started off in a local private preschool. He was bright, energetic and engaged. But his teacher noticed that he didn’t always follow directions. She thought he might have a hearing problem.
So we took him to our county’s early intervention program and had him tested. His first diagnosis was “pervasive developmental delays.” He was 2½ years old, and we were in shock.
My husband and I rushed to get him every type of support available. There wasphysical therapy, occupational therapy, sensory integration sessions and speech therapy. We played with him, read with him and loved him.
We started him at a public preschool program for kids with special needs in the morning. In the afternoon, he continued at the private preschool. There, he could see his friends and interact with kids who were more developmentally typical.
We also hired an educational consultant to learn about our school options. By the time our son reached age 5, he had a new diagnosis: “Asperger’s syndrome.” We knew about learning and attention issues, of course. But we’d never heard of Asperger’s. To read more about our journey, go to Understood.org.
Looking for a job — or seeking great candidates to fill a position you have? Tune in at noon ET, Tuesday, Aug. 19, when Forbes’ contributor Devin Thorpe talks with Thorkil Sonne of Specialisterne USA, a nonprofit company that aims to bring 100,000 information-technology-related jobs to the U.S. Sonne generated worldwide interest a few years ago when stories surfaced about his success in tapping the unique talents and skills of workers with autism in Denmark. Sonne, who has a son with autism, created Specialisterne to assess, train and hire people with autism.
I’m generally an optimistic person. But I always like to be aware of the potential downside of things — particularly when it concerns laws and regulations related to people on the autism spectrum. Which brings me to a law that went into effect this month in Virginia. As of July 1, Virginia drivers with autism, Asperger’s Syndrome or others on the autism spectrum can volunteer to have an autism code embedded on their driver’s license. Ditto for non-drivers who carry a state identification card.
The new law has raised concern among some drivers and disability advocates who worry about the potential for discrimination from law enforcement in the future.
The idea is that if stopped by law enforcement, displaying the card with the autism designation might keep police from misunderstanding any unusual behavior the person might display. My fear, however, is that a law meant for good could easily be used for ill. There’s no evidence that adults on the spectrum are better or worse drivers than the rest of the driving population — nor that they have more or less accidents. But the new law has raised concern among some drivers on the autism spectrum — as well as disability advocates — who are worried that they might face discrimination from law enforcement in the future if their licenses bear such a designation.
Fortunately JP’s Law, as it is sometimes called, is voluntary. It is up to the individual driver to opt-in. Pam Mines says her 9-year-old son with autism was the catalyst for her pushing Virginia lawmakers to adopt an optional autism code that could appear on state identification cards and driver’s licenses. For Mines, it was a pre-emptive strike in case her son ever encountered law enforcement and could not articulate his disability.
It doesn’t surprise me that the number of autism and autism-related cases in this country continues to rise. The report out today just makes it official. 1 in 68 U.S. children have an autism-spectrum-related disorder, up from the previously thought 1 in 100. In ways, the rising rates are predictable, thanks to simple math. More kids (and adults) are aware of autism and autism-spectrum issues, more doctors are knowledgeable about autism, so more cases are bound to be diagnosed. Couple that with the links that researchers see between older mothers and an increase in the number of children born who have autism or are on the spectrum — and voila! Boys are more than four times as likely to be affected as girls. Just think: Autism rates jumped about 30% between 2008 and 2010, according the Centers for Disease Control and Prevention. And those are just the latest figures we have. Who knows what the number would be if we could take a snapshot this very minute. Why is this happening? The million-dollar question is whether something in the environment plays a role, says Robert Ring of Autism Speaks.
Can people with Asperger’s lie? It would be nice to say no, but the truth is most people figure out that saying certain things get them into trouble, and once in a while everyone lies, usually to protect themselves.
It is true that people with Asperger’s lack some of the skills needed to tell a good lie – body language, either consciously or subconsciously, may give it away. Or the tone of voice, or an inability to create a plausible story. I do admit to using the “Aspies Don’t Lie” concept in Asperger Sunset as a plot device, but it is pretty idealistic.
People with Asperger’s do, however, have a strong desire to follow rules. Anxiety and emotion create a chaotic world and rules sort things out. Children with Asperger’s often play meticulous games with their toys, lining them up and grouping them, keeping everything in order. Following the rules…
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Yes, I’m seven seasons late to the beauty that is CBS’ The Big Bang Theory. The comedy won one of its lead characters, Dr. Sheldon Cooper, a third Emmy this year in addition to his wins in 2010, 2011. Yet I’ve just discovered what a gift the show is to the community of people who have an interest in Asperger Syndrome. It is aspie cool to the nth degree.
Actor Jim Parsons portrays Dr. Cooper, a gifted, gawky and genuinely lovable geek who exhibits some of the traits that can be associated with Asperger Syndrome: aloofness, inward focused, eidetic memory, discomfort in unfamiliar settings, the love of routine. The genius of the character and his place in the show is that he has a strong social group of peers who help him navigate the tricky world of interpersonal relationships. Oh that such social groups were the norm, not the exception.
Finding the right social group, one that you not only fit into but that makes you a better person, a higher achiever and moves you ever further toward self-actualization is sometimes an elusive goal for the person with an Asperger diagnosis. One-on-one relationships often can be easier than navigating group situations. Yet depending on one person for the bulk of your social activities can be limiting and disappointing, especially if schedules don’t mesh and opportunities to get together are minimum. That’s true even for people not on the spectrum and those who have no trouble meeting and connecting with new people.
A number of groups have sprung up to help anybody and everybody make social connections. Several are geared to young adults. Meetup.com is a great starting place to find an affinity group. Perhaps you love anime or videogames or cycling or outdoor adventures. Whatever your taste, there seems to be a Meetup to suit it. There’s even a specific Asperger group Meetup. Just go to the website, put in your Zip Code and you can find a group that gathers near you. Beyond that, churches, community groups, workplaces and the pages of your local newspaper or favorite local news website often provide information about activities and social groups that might appeal to you.
Asperger Syndrome is on the rise. At least that’s the implication of the latest research that finds autism is nearly twice as common as previously reported. The federal Centers for Disease Control and Prevention says nearly 1 in 88 children in the U.S. have autism — approximately one million children and teens. That’s up from 1 in 110 children in a 2006 study. Why the increase? The answer is inconclusive. It could be that better screening and diagnosis accounts for the findings. But there could also be overdiagnosis at play. What is clear, though, is that little progress has been made in the treatment for AS and autism and much more education and assistance is needed.
My frustration level runs high when it comes to new studies about the causes of autism. Researchers are quick to publish but often with findings that are sparse and less than helpful. The latest is a study in the Archives of General Psychiatry that asserts that environment might play as great a role in the roots of autism as does genetics. There are lots of studies that note a variety of issues might be contributing factors in autism: age of the mother, weight of the baby, infections, etc. None of those have been proven, of course. And in the latest study — conducted by Dr. Joachim Hallmayer and his team at Stanford University School of Medicine — it is reasonable to ask what types of environmental influences are at play. The study of identical and fraternal twins doesn’t say. Yet the study attributes a proportional role of environmental influences to genetic ones: 55% to 40%. More autism research, and money to fund that research, is needed. But more caution is also needed among those researchers trying to get at the roots of the developmental disorder. More than 1 in 100 children are thought to have autism. Let’s fund studies that are helpful to the millions of parents and parents-to-be who are searching for answers.
The headline from The Cincinnati Enquirer reads: “Students honor special-needs peers at prom.” It is heartwarming to read stories like this but it also reminds me that this kind of behavior tends to be the exception, not the norm, in society. Acceptance of people who look different or learn differently or whose personal challenges are different from our own does not come easily to many. But that acceptance is what our very humanness demands of us. “There but for the grace of God go I.”