April 2, 2012, was Autism Acceptance Day. Some people refer to it as World Autism Awareness Day or the start of Autism Awareness Month, but I prefer the first term. Awareness is the easy part, although it is necessary first step to acceptance. Acceptance is what causes people to struggle, but it’s the essential step to granting the dignity and respect each human being deserves.
I’ve written before about the relief that came with my son’s diagnosis of Aspergers a year and a half ago. It was the day I stopped wondering if I was a bad parent, if he would just “outgrow” his challenges, if I was just getting it wrong. I’d wondered if he’d had a spot on the autistic spectrum prior to age nine. The question of a pervasive developmental disorder had been raised since he was four, discarded because of his prodigious vocabulary and high intelligence. I’d spent the previous few years “acting as if” to some degree, relying on books about parenting kids on the spectrum. I knew before I knew.
The formal pronouncement wasn’t a surprise. It wasn’t devastating. It was a point of peace. It was the start of understanding my son better. Perhaps those are some of the reasons why I found Hannah Brown’s article in the Huffington Post bothersome. Her piece 10 Things To Do After An Autism Diagnosis treats an autism diagnosis like a death sentence for a parent. It removes focus from the child and places it on the parent.
Who has the diagnosis here? Yes, finding out your child is likely to need support and assistance on many fronts possibly for life is daunting and gives one pause. Even with the relief I found initially in my son’s diagnosis, I experienced (and still experience) a sense of the enormity parenting a child who’s wiring will always be quite different from that of the vast majority of other people. Helping him find his way through the world; aiding him in feeling comfortable in his own skin: these were the tasks that daunted me and brought (bring) me to tears.
This is, after all, the same child that one has been parenting all along. Whomever gives the diagnosis isn’t changing a child’s biology just explaining it. The nine years of parenting my younger son before his diagnosis were harder in many ways than the year and a half that have followed. With a diagnosis, it was easier to access help (although not the kind covered by insurance). Just calling local psychologists and opening with, “My son was diagnosed with Aspergers,” made vetting therapists and getting appointments easier. Just having a schema to support my understanding my child’s behavior and mind helped me understand him a bit better. Information is empowering. An accurate diagnosis on the autism spectrum provides information for a family and, depending on the age of the child, an opportunity for self-revelation for the child.
Brown’s first three items to do after diagnosis reek of negativity and doom. Advising one to obtain Valium (#1 on Brown’s list) and reallocate assets to one’s own name to prepare for the inevitable divorce? (#2 and 3)? Please. (The stats show no difference in divorce rates between parents with spectrum kids and those without. I was divorced at the time of his diagnosis, and I assure you, it was not my child’s fault that my marriage imploded.) Not that parental needs and feelings don’t matter. Parental mental health contributes to the mental health of the child. If that’s Brown’s point, however, she’s missed the mark. Certainly any parent feeling overwhelmed or depressed should seek professional help and the support of others, but Brown’s drama and narcissism removes the focus from supporting the child. It is, after all, the child who is autistic.
So here’s my list, limited by my own experience with my child who is on the Aspergers end of the autistic spectrum but perhaps helpful for someone else.
- Remember this is the same child you had before the diagnosis, the one you’ve parented since the beginning. Nothing about being labelled autistic changes your child. The label provides information for you, your family, and those whose lives touch your family. For an older child, knowing one has autism can be empowering and peace-bringing. Schoolhouse Rock was right: knowledge is power.
- Breathe. Eat. Try to sleep. Brown’s suggestion to meditate was a good one (although sullied by her application of using the practice when comparing your kid to other kids). If you are the prayerful type, pray without looking for direction but rather in search of peace and inner quietude. All parents need plenty of that.
- Read. Read widely. Start with The Thinking Person’s Guide to Autism book and blog. Continue reading the blogs of the parents and autistic people who post there. Start looking at autism from those who live it. Here’s a list that helped me: Reading Through Aspergers: Part I and Part II.
- Listen. Learn what self-advocates have to say, even when it hurts. Yes, there tends to be a tension from adult autistic self-advocates and parents of autistic children. It can be hard to read stories from those who grew up autistic even ten or twenty years ago. It’s even harder to be rebuked and corrected by these same adults when you’re trying your best to figure out how to help your own kid. Listen anyway, with as open mind as you can muster. Then open your mind just a bit more. There’s much to be learned.
- Think and research. Brown and I agree here. There are plenty of interventions, proven (a few) and not (a large number) for those with autism. The Autism Science Foundation and LBRB: Autism News, Science, and Opinion are fine places to start when investigating therapies and interventions. Avoid anything using curative language. There is no cure, although charlatans will be glad to try to sell one to you.
- Maintain relationships that support you and your child. It may be tempting to reduce your world to those with autistic children, but don’t. It’s a big world out there, and autism isn’t all of it. Your matter-of-fact presence in that world with your child on the spectrum can benefit your child, you, and that big world.
- Teach others about the autism spectrum and about the needs of your child. Not the preachy kind of teaching but rather the more spur-of-the-moment sort of teaching. Pass on books or internet links to those who are interested. A world that understands autism is far more likely to appreciate and support your child now and into adulthood.
- Vote. Vote for public officials who work to expand insurance coverage of autism therapies. Vote for health care coverage for all, coverage that includes mental health care.
- Remember the rest of the family. It’s easy for the autistic child’s needs to be so great that the needs of the “easier” members of the family become lost. While your time might not be spread equally across all the family, your care and love can be. I remind myself (and have reminded my older son) that fair treatment doesn’t always mean equal time. Remember that just because your other children may have quieter needs, their needs are no less important. Nurture that relationship with your partner, too. A loving teammate can make a difference.
- Accept autism. Start by accepting your child just as he or she is while continuing to help that child be all he or she can comfortably be. Acceptance isn’t passive. It’s an evolving spirit of support, love, and compassion. It also isn’t always easy, so be prepared to start over with acceptance on a regular basis. That’s okay.