Thursday, September 25, 2008

Responding to Autism

Recently, I came across a discussion on an internet forum that got me thinking. Yes, yes, I know “thinking” is dangerous, but I like living on the edge. I have thrill issues.

This particular forum is for parents of children with autism, and the discussion thread that got me thinking was titled “To Tell or Not to Tell.” The person who initiated this thread was curious to know how other parents decided to tell or not tell friends, family, schools, and strangers about their children’s autism.

To tell or not to tell isn’t a choice for many families with disabled children because the disabilities are obvious even to the casual observer. Autism, however, isn’t always obvious. Metaphorically speaking, it’s a big, shadowy, amorphous blob with fuzzy margins and no clear-cut features to define it. Medically speaking, it is a neuro-developmental disorder that involves social developmental delays; a huge variety of speech and communication problems; and stereotypical behaviors that are repetitive, routine, or ritual in nature, and interfere with daily life. (Did you get all that? That’s okay. No one else does either, not even the experts.)

Developmental pediatricians and child psychologists may know immediately that something isn’t right with a particular child, but they spend years studying what to look for and order multiple evaluations by lots of different specialists before they will diagnose autism. Grandma, Aunt Marge, Neighbor Bill, and Stranger at the Grocery Store, however, may not notice anything out of the ordinary.

So…“To tell or not to tell?”

When we began the process of getting Jack diagnosed, we sent out a mass email to friends and family asking for prayers and support. From our point of view, how could we NOT include our family and friends in something so huge? George and I are WYSIWYG: what you see is what you get. To us, not dealing openly with this implies we are somehow ashamed of Jack. Nothing could be further from the truth. We love him and think he’s wonderful no matter what label is affixed to his medical or school record. If the label gets him the help he needs, it serves a fine purpose as far as we’re concerned.

But there are two sides to telling: someone does the telling, and the people who are told do the reacting. Sadly, many parents of children with autism have to deal with unpleasant reactions. They hear comments like, “There’s nothing wrong with him that a good spanking wouldn’t cure.” Or, “You’re over-reacting. He’s fine.” Or, “If you just do this, he’ll be normal.” It is sad how many parents hear these things from the very people whose support they desperately need: family and friends. These reactions make it very easy to understand why parents might decide not to tell.

Over two years ago, when we started this journey with Jack, most everyone we told trusted our judgment and offered up love, support, and prayers. But one person boldly declared to me, “There’s nothing wrong with this kid, and he certainly doesn’t have autism!”

What are you supposed to say to a comment like this?

I had no idea, so I said something vague and noncommittal. I wasn’t angry about the comment, just taken aback. I understand people honestly don’t know what to say in situations like this, and denial may seem a reasonable, compassionate response. People say unhelpful things, but rarely do they intend to be mean or rude or insulting. He certainly didn’t, and I knew that. It would have been out of character for him.

Nevertheless, many other parents are highly insulted and hurt by these sorts of comments and vent angrily on the forum. One woman’s sister, who has no children but raises dogs, told her that she just needed to discipline her autistic son more so he wouldn’t be such a disruption at family functions. The offended mother asked on the forum, “What am I supposed to do? Put a choke chain on him? Smack him on the nose?” Such an angry reaction is perfectly natural, largely because these parents are grappling with something that is huge and scary and life-altering. They do not need criticism or advice, just hugs and support.

People who have never experienced this and know little about autism (or worse, have seen the movie Rain Man and think they know everything about it) just can’t understand. When you bring a child into this world, you generally assume he or she will be “normal,” however you define that word. When you find out this isn’t the case, that your child has a brain disorder for which there is no cure…, well, let’s just say it’s a shock. In this state, parents can become emotionally fragile, even more sensitive than they might usually be. When someone questions their judgment, which is based on professional medical evaluation, they can easily get defensive and flip out.

You can’t really blame them, can you?

Jack’s official diagnosis was Pervasive Developmental Disorder—Not Otherwise Specified, mildly affected—or atypical autism. Most people who meet Jack casually don’t see any problem at all, but he has significant delays in social development and speech, along with sensory problems and delays in gross and fine motor development which sometimes accompany autism. Unlike more severely affected children, he has good expressive language, is empathetic and can read facial expressions, and is easily redirected most of the time. He made so much progress socially in the last eight months that his developmental pediatrician got choked up at his last check-up. Sadly, developmental pediatricians don't always see that kind of dramatic improvement in their autistic patients.

Jack is so blessed. His brain is working hard to rewire itself to function more normally. Not all kids with autism have brains that can do this. Jack’s progress, however, is a direct result of his own hard work as well as the dedication of half-a-dozen therapists and doctors who provide expert treatment; wonderful teachers and aides at two different schools who respect him and cheer for him and make him work; a church, family, and friends who accept and love him; and parents and a brother who pay attention to him and heap love on him daily.

Last year Jack’s teacher asked him, “What is the best thing about being Jack?”

He replied, “Love.”

Think about that for a minute. All these people pulling for Jack have surrounded him for over two years with their love and prayers, and even at the age of five, he knew it. Would our church, Jack’s typical preschool, friends, and family have done this if we didn’t tell them about his challenge in the first place? Would they just think he was a disrespectful little kid who ignored them and refused to look them in the eye? Would they get angry when he wasn’t paying attention to them or when he wandered away while they were talking to him? Would they think he was weird when he started acting out Blue’s Clues dialogue with his reflection in a glass door? Would they understand?

One day about a year after the diagnosis, Jack had a substitute gymnastics teacher, and I decided to conduct an experiment: I didn’t tell her. After class she informed me she had to hold Jack out because he wouldn’t listen. It was obvious by her tone she thought he was a brat. So I told her. She must have thought I was nuts because I smiled benignly the whole time she chewed me out. I deserved a chewing-out for setting her up like that, but I had to test my theory in a safe environment and she gave me that. Sure enough, when she taught him in later classes, she was patience personified.

I’m telling. It works for us.

How people respond, however, is up to them. It’s hard responding well to any friend or family member confronted with a huge challenge, whether that challenge is autism, cancer, divorce, job loss, or death of a loved one. Sometimes you feel like you need to make the challenge smaller for them or fix it for them because your heart is breaking, too, and you want to do something, anything, to make it better. I’ve certainly felt those things when on the responding side.

Now that I’ve been on the telling side, though, I think I’ve figured out what makes a good response. If you find yourself fishing for something to say, try something like this:

“Wow, this is huge. I can’t imagine what you’re going through right now, but I’m here for you. Feel free to talk to me, vent to me, complain to me, cry on my shoulder, punch my sofa pillows, whatever you need. Teach me what this means so I can help you carry this load.”

George and I are so blessed. We have heard variations of this response from Day One of our autism journey, and I simply can’t tell you what a difference it has made, at least not without making a blubbering fool of myself. So I’ll just paraphrase an expert:

The best thing about being the Raihala family is…love.


  1. Wow, thank you so much for your post on Splitcoaststampers site about your blog. I am a stay at home mom of 3 beautiful children (6years,4years,20 mos), and it is our middle child we are trying to get help for. I am also a trained Early Childhood Educator, who has worked with hundreds of children and this little boy isn't anything like them. I have been told that I have taken something small and made it into something huge, that he is playing us, that he needs a good whack etc etc. I know deep down that something is seriously wrong with my son, but I didn't know I would be turned down so many times. Finally, I took him into a walk in clinic on one of his "bad" days and said here is my son...may I please have a referral?? We are finally getting seen on Oct. 7th by the Autism Assessment team, and he goes to a special preschool. We also put him on a restricted diet with the help of a naturalpathic dr friend, the diet has helped him out alot. No corn, no wheat, no eggs, no dairy, no sugar (2 fruit a day, and if he has juice it has to be very diluted). I didn't think the diet helped him, I took him off for one day...he went from being very verbal to nothing...just sitting there moaning and crying. Yep, he's back on that diet...5 weeks on it and we have seen changes in him :)! But I am worried about our appointment with the assessment team, just because we have been turned down so many times before. I have also read lots and lots of books, to discover that Ethan is a very visual those picture charts work for him.

    Anyways, thanks again for this blog entry it has made me feel better...


  2. Thanks for sharing. I like the response that you would like to hear when telling people. That would apply in so many situations.

    I know what you mean by people's unsolicited help. I have had multiple back surgeries and currently am living with a failed fusion that causes a fair amount if pain. People often tell me what I need to do, who I need to see. I usually just thank them for their concern. But sometimes if they offer to much I will ask where they studied medicine, how long the studied my condition, etc.

    I think most people offer solutions because the simply don't know what else to say.

  3. How passionate and articulate you are on behalf of your son. I have one healthy daughter, but have several friends whose children struggle with autism. Thank you for helping me understand them and for finding good ways to offer my support and kind words that are meaningful. How lucky is Jack to have a mom like you! I wish you continued energy on your journey with your son and best of luck with your book. Kathy/CAKath


Thanks so much for taking time to comment!