What are the first things a parent should do after receiving an autism diagnosis for their child? In this Autism Awareness Month, there is no shortage of answers to that question, particularly since the month began with the news of an increased rate of autism.
Why, then, am I offering my own suggestions to parents? Because frankly, I haven't been too impressed with some of the other offerings. Here at The Huffington Post, Hannah Brown came up with 10 things parents should do after an autism diagnosis. But #1 was to get a prescription of valium (for the parents) and #2 and #3 were steps to take in case you join the 80 percent of parents of autistic children who get divorced.
Now there's nothing wrong with valium if a parent is having trouble handling anxiety. But why make this the first suggestion on the list, thereby increasing the anxiety of any new autism parent who's looking for good advice to help cope with a challenging time? And as for that 80 percent divorce rate, it's a myth. In fact, a 2010 study from the Kennedy Krieger Institute found that parenting a child with autism doesn't necessarily result in divorce more often than in families with typical children.
Meanwhile, over at the Healthism blog you can find 10 autism resources every parent should know about. But while there are some very well-known autism organizations on the list, there is no link to any organization that gives a primary voice to autistic people themselves. Combine that with the fact that some of the organizations engage in very questionable autism science, and you'll find that this list is limited at best.
So what should you do if you're a parent who's concerned about your child, but would like a realistic guide to accepting your child's autism and helping him to thrive as an autistic person? Here are my suggestions:
1. Read "Don't Mourn For Us." Written by autistic adult Jim Sinclair in 1993, this essay has roughly the same relationship to the autism acceptance movement as the Declaration of Independence does to the United States: it's foundational. Sinclair points out that the grief that parents feel when their child gets an autism diagnosis is "grief over the loss of the normal child the parents had hoped and expected to have." He urges parents not to let that grief prevent them from working with and taking joy in the autistic child they have.
What's so bracing about Sinclair's essay is its tone. Most parents who tell other people that their child has received an autism diagnosis can expect a heavy dose of sympathy and concern. Sinclair is different. It's not that he's unsympathetic; it's just that he knows that wallowing in your grief isn't going to help anyone, least of all your autistic child. Honestly, he'd like you to get on with it, and as he offers an autistic perspective on parents' grief, you begin to realize he's right.
2. Listen to autistic adults. It may be hard to imagine your autistic child as an adult who could offer advice about autism to others, and many parents dismiss autistic adults for that reason. But autistic adults were once autistic children and they went through many of the same things that your child will go through. Reading their writing or meeting them in person will be enormously calming, because it will allow you to imagine a future for your autistic child.
I recommend checking out the Autistic Self Advocacy Network. Run by and for autistic people, ASAN's goal is to provide support and services to people on the autism spectrum while also educating the public about autism and improving perceptions of it. Rethinking Autism, which is run by the mother of an autistic son, includes videos about and writing by autistic adults.
There are also plenty of blogs written by autistic adults and reading them can give you tremendous insight into what it means to be autistic. Recently I've been reading a lot of Autistic Hoya, by Georgetown student Lydia Brown, and thAutcast, a sort of insider's guide to autism thought and politics by Landon Bryce.
3. Get support from other parents who understand the challenges of autism but also believe in acceptance. The Thinking Person's Guide to Autism was started by parents of autistic children, and it aims to be a "one-stop source for carefully curated, evidence-based information" about autism. That information is now provided by experts, parents, and autistic adults (remember that there is some overlap among these categories), and it's available in book form, too. TPGA is clear-eyed, sensible, hopeful and supportive.
Full disclosure: with the exception of Jim Sinclair, the organizations and individuals I've mentioned have occasionally said kind things about my autism film. However, none of them knew about or asked to be included in this post.
4. Remember that you have time. You'll hear over and over how important early intervention is and how you only have a few years to make a real difference for your child. But let go of the idea that your autistic child's future will be determined by the time he's five years old. If anyone said that about a typical child, we'd laugh. That should be our reaction when we hear similar things about autistic children.
Like anyone, autistic children will develop throughout their childhoods and beyond. They may do it differently, and they may wind up in a different place, but they'll do it. And you will be one of the primary reasons. As Jim Sinclair says, "The adventure of a lifetime is ahead of you."