Tuesday, April 3, 2012

World Autism Awareness Day

Yesterday was World Autism Awareness Day. I lost track this year and was reminded when I read a post on a friend's blog. With all the media coverage in the past few years, people are becoming somewhat more aware of what autism is and the statistics, but here are some things you might not know about autism.

1. Moms and dads of children with autism often go through cycles of interest in the subject. Sometimes, we devour every book, magazine, and website we can lay our eyes on, spend hours on Internet forums, join support groups, even spend hundreds or thousands of dollars going to conferences to learn what no one really knows: what causes this and how can I help my child overcome it?

At other times, we want an autism news black-out. That's why World Autism Awareness day snuck up on me. We live it every single day, and constant saturation wears us out. Enough, already!

By the way, we can fluctuate between these two states of obsession and avoidance instantaneously, which only adds to our sense of being on a scary roller coaster ride without a safety bar.

2. One of the biggest social networking problems we parents face is the fact that every single child with autism is different. The saying in the autism community (we have our own community, you know) is "If you've seen one child with autism, you've seen one child with autism."

Those support groups I mentioned above have only limited usefulness because my experience as the mother of a well-behaved, high-functioning child bears absolutely no resemblance to the experience of a mother whose nonverbal son has to be institutionalized because he is now too big for her to control during his tantrums and he can't stop pulling out handsful of his sister's hair. Our two sons represent opposite ends of a spectrum of endless diversity.

How do you find people who can truly empathize with your particular situation, who can say, "I know exactly what you are going through"? It's tough. And isolating.

3. There's a lot of factionalism and division in the autism community. I've watched television talk shows that degenerate into name-calling and verbal violence over subjects like the gluten-free, casein-free diet or whether environmental toxins or genetics are to blame for the disorder. Internet forums are riddled with threads that degenerate into nasty name-calling and insults.

Without clear answers and definitive research results, chaos and ignorance rule. And where chaos and ignorance rule, cruelty thrives. One mother tells another, "If you loved your son, you'd put him on the GFCF diet." Another says, "I can't believe you're wasting your money on DAN doctors! You need to accept your child's condition and just take him home and love him."

Cruelty also takes the form of snake oil sales..."Give us $3,000, $30,000, $100,000 and we'll FIX your child!" Out of hundreds of treatment options that compete for parents' hard-earned money and government support, only a handful have serious scientific research backing them. Some have substantial anecdotal support and truly seem to help some people, but some treatments are complete hokum, as Dr. Sheldon Cooper would say. How do parents who don't have advanced degrees in child psychology, developmental pediatrics, and neuroscience distinguish false claims from legitimate avenues to pursue?

4. There's also a lot of compassion and realistic common sense in the autism community, too. I have two close friends whose approaches to treating their children with autism are polar opposites, while George and I have opted for a sort of middle ground. We all respect each other's decisions, support one another, encourage one another, and above all listen without judging each other. Also, some Internet forums are ruthlessly polite and supportive and respectful, although it can take effort to find them.

Almost all the therapists, special education teachers, doctors, and aides we've dealt with in the past six years--about fifty in all--have been lovely, positive, encouraging, skilled people. Many who work with our children understand their own level of informed ignorance. Their humility and willingness to try things give me hope--lots of it--for the future.

5. Autism, at least for us, can be funny. We laugh a lot, and Jack's sunny personality lifts us all up daily.

6. Autism is real, with 1 in 88 children diagnosed. What we do with it as a nation will say a lot about who we are as a people. Jack has had wonderful blessings in a school district dedicated to seeing him succeed, but not all school districts are as committed to helping our children. A friend's son was diagnosed in a district in Texas that wanted to warehouse him with other profoundly disabled children. The psychologist in that district told my friend her son would never read and never function in an inclusive education setting. After a futile fight that included lawyers, my friend and her family moved back to Ohio. This year, her son is in sixth-grade inclusion, without an aide, and doing extremely well. He reads above grade level, too. If my friend had listened to that first school psychologist and given up, her son wouldn't have left the warehouse the Texas district dared to call a "school" until it was time to move him into a group home. He's got a lot more hope now.

Her son's case highlights just how variable resources are across the country, and even from one school district to the next. We need more consistency in resource availability to help all children, no matter where they live; more informed and helpful bureaucrats and politicians making and executing policies that serve those who need help most; more money for research and treatment.

It might seem to be an overwhelming task, and it is. But like all big problems, let's each do what we can to help. Smile and offer kindness to the mom whose son is melting down at the grocery store, donate a few dollars where you can to legitimate autism charities, stand up for the rights of children who can't speak for themselves in your school district or when you vote on public services.

Thank you. From the whole autism community. Thank you.


  1. Wow, what a great post, Susan. I agree with everything you said. The part about our varied experiences really rings true for me. It's so hard to find anyone who understands, since every kid on the spectrum is so different. My daughter with Aspergers seems totally normal most of the time, but then there will be a massive public meltdown, or weeks of schoolwork forgotten/lied about/hidden while well-meaning teachers just waited and didn't say anything to me, or a school counselor who just doesn't get it and undermines everything that the special education folks are trying to do with us, and we're right back in Autism World.

  2. I feel like I have learned something today. Your friend's Texas story is terrible. It makes me wonder just how many wonderful children are going through what her son didn't (and not only in Texas).

    Finally, thanks so much for the phrase "ruthlessly polite". I LOVE IT.

  3. Amen, Susan! I have nothing to add. Thank you for putting everything I was thinking yesterday into words. 1 in 88?!? I saw that last week. I really can't believe it. When Spencer was diagnosed, we had never even heard of autism and it was more like 1 in 450. I feel so blessed that God put you back in my life after so many years.

  4. My experience with online forums, support groups, and communities built around a diagnosis is that they seem to draw heavily from people with extreme experiences and/or points of view, the result being that they directly or indirectly foster anxiety or bullying in one form or another. I tend to delve into research, but that is exhausting too. I don't have a child with autism but I completely relate to your phases of complete immersion in news and research on a medical topic followed by a desire for a complete blackout on the same. I feel for every parent that has to deal with a child's complex medical or developmental diagnosis. It is so much worse than dealing with your own medical issues.

  5. Thank you for writing this. You may, or may not, remember that John's little great-grandson was diagnosed with Autism a couple years ago. He will be 4 in July and has only recently started communicating with one word at a time. But, when he was just over 2, we stopped to see them and he would out-loud, take his alphabet blocks and say the letter and put them in correct order. Same with numbers up to 20. 2 years old. He is very smart. He hasn't taken a shine to me yet but he loves John.

  6. This was very insightful for a parent who does not have to deal with such on a daily basis. Thanks for the time spent to educate the rest of us!

  7. I am the mother of a 19 year with autism. I found your article by searching for autism and gratitude journal which may seem like an oxymoron. I have experienced most of what you have written and find your open-mindedness refreshing. I hope you will continue to write so eloquently. My son is giving me many reasons to hope and is becoming a good friend. Thank you for giving me a place to find positive support and share.

  8. Thank you all for your comments! And to LoriW, welcome!!!!


Thanks so much for taking time to comment!