I was talking to a friend last week about her son, who was recently diagnosed with autism. He’s 8, and she is feeling frustrated and overwhelmed — not by her son, but by the challenge of figuring out what to do next.
Once you have that diagnosis in hand, the questions start piling up. What services does he need, and what will insurance cover? What really works, and what is just a hopeful shot in the dark? How can she get the most out of the public school system? Who coordinates all of this? Do you need a small army of specialists or just one really good behavioral or occupational therapist? And what is ABA, anyway?
I didn’t have all of the answers for my friend’s questions about therapies and billing and case managers. That all varies by kid, by insurance provider and by where you live. I pointed her to a few Web sites, including myautismteam.com, Parents of Autistic Children of Northern Virginia and the Thinking Person’s Guide to Autism.
I also told her it gets easier. And that she should build a community of people she can get advice and support from. In other words, don’t rely just on specialists and professionals, but on other parents of kids with autism, and adults on the autism spectrum, who can help her better understand her son. Jason Katims, the executive producer of NBC’s “Parenthood,” and the father of a son with autism, once told me he thought finding that community was the first thing any parent should do after their child is diagnosed. I agree, because for me, that network of people is what has made things easier with my son, who has an autism spectrum disorder.
That network of new friends might recommend a therapist or a social skills group or a place for a haircut, and that’s incredibly valuable. But even more important, they get it. Whatever we are going through or struggling with or celebrating, many of them have been there and they can relate. A little empathy can help a lot on a difficult day.
So with that in mind, I reached out to a few of the people I’ve encountered along the way, and asked them to share their best advice for parents of children recently diagnosed with autism. Here’s what they had to say:
Sharon Fuentes, author of “The Don’t Freak Out Guide to Parenting Kids with Asperger’s,” blogs about her experience raising her son Jay, 13, at Mama’s Turn Now. Her advice:
“Your son or daughter is still the same person they were before they got the diagnosis. I know this may not have been the path you would have chosen to have traveled down, but some of the best journeys in life are ones that happened when we unexpectedly took a left turn. Yes the road can get bumpy, but that is when you need to reach out to all those that have been there before you who do whatever they can to smooth the path for your child. Remember that you are not alone, trust your own instincts, breathe, laugh often, believe in yourself and more importantly believe in your child and never ever lose hope! ”
Bernie DeLeo is the drama teacher at West Springfield High School in Fairfax and has a 20-year-old son, Charlie, with autism. This spring, the school staged a play DeLeo wrote, “Nerdicus (My Brother with Autism),” about his daughter’s experience growing up with a sibling with autism. His advice:
“My biggest advice to parents is, first, don’t panic.
Second, after the initial freak-out and panic (you will, even though I told you not to), educate yourselves and know your rights and options.
Third and most important, don’t let people tell you what they think your child is capable of. They will immediately see the disability, and NOT your child’s capabilities! Every child will be different. At my son’s high school, they recommended that he not take languages or aim for the Advanced Diploma. ‘Special Ed children tend not to do well with languages,’ they said. We ignored that advice, he took 5 years of Spanish — and now he’s living away from home and majoring in languages at Marshall University.”
Shannon Des Roches Rosa is one of the editors of the Thinking Person’s Guide to Autism, a book and Web site devoted to providing information information from autism parents, autistics and autism professionals. She also has a personal blog at Squidalicious, where she writes about her adventures parenting 13-year-old Leo, who has autism. Her advice:
“I wish — more than anything — I’d tried harder to understand my son instead of trying to ‘fix’ him. He was the same sweet, capable boy both before and after his autism diagnosis; the only change was my awareness of his needs. And he needs me to love him, respect him and champion him. He needs me to make sure he has time to play. He needs me to fight for appropriate communication and learning resources. He needs me to get him supports to navigate an autism-unfriendly world. Understanding instead of fighting Leo’s autism makes us both much happier people.”
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