Some Things I Have Learned From Kids with Autism

Autism has been in the news recently. Scientists have published a new study that shows that if a couple has one child with autism, the odds of having a second or even third child with autism is much higher than previously suspected.

This did not come as a surprise to me. I spent many years working with families who had a child (or children) with autism, and saw first hand, far too many times, new additions to the families that were diagnosed with autism, also.

That was just one of the things I learned while working with these families.

I have a daughter who was diagnosed with autism decades ago. She was fairly severely affected. She did not speak (except on one occasion when she told Santa Claus to “go away”) until she was almost four, seemed deaf, banged her head on glass doors and cement floors, lined things up on all the windowsills whenever she got a chance, and had a host of other classic autism symptoms. The doctors also told me she was moderately mentally retarded - but that is another story. We were extremely lucky to find an effective treatment for her. Today, she is one of the minority who have grown up to be no longer handicapped, and has supported herself for years since she graduated from college.  

In the course of time, I became a professional in the field of autism ABA therapy, and I still hold my BCBA. I learned a great deal during my time at graduate school and during my formal post-graduate training about what was effective (and what was not) with these kids. In California, I ran a practice that provided therapy to over 200 kids with autism over twelve years. I saw every one of those kids regularly and got to know them and their families. And as much as grad school taught me, I learned even more while actually working with these children and their families. Of course, that training centered on finding the most effective approaches to treat these children, especially as new research was published.   

But the kids themselves taught me much more.   

I learned that it actually can be pretty calming to just watch the leaves moving in the wind outside the window, or watching the glitter specks slowly drop down a plastic tube on a toy. Sometimes I can watch the leaves or a spinning wind blown ornament and forget all the pressures and stresses of “real life”, even if only for a moment. How can I blame a child for wanting to do the same thing? I can take some enjoyment out of a tidy home (when I get the chance) – and who am I to say that there is no joy to be had from neatly lined up Thomas trains on every windowsill?

I discovered that there is actually a pretty interesting sensation that results from flapping your hands long enough. I have seen photography done by kids with autism that presents the world from a different (and actually rather compelling) perspective sometimes. The stress relievers we find acceptable as a society are really part of a pretty arbitrary list – and the kids do not mold what they do around that list. (I am not advocating self-stimulatory behavior that interferes with learning or appropriate socializing - it is just an observation that everyone “stims" sometimes. )

I learned that there is nothing harder to make or keep than a friend, and nothing more valuable.

I learned that a child’s first word, or first success on the potty, or first day in “regular” school (especially if they were able to do that on their own, without an aide) was a miracle for all kids, but with our kids we never forgot to appreciate that fact.

I learned that some of the loneliest and most isolated children in the world are some of the siblings of kids with autism. Yet among these siblings are also the most compassionate and forgiving people I have ever known, even though many  were still very young children themselves.

I learned that the most important sentence to learn was to answer “I love you too” when told “I love you."

I learned that the academic learning that was so emphasized in the schools was not particularly predictive of the success of our clients. Many of them had an easier time learning to read than learning to speak, and some could read as preschoolers.  I saw that some kids could be brilliant academically (especially in the lower grades where concepts are more concrete), yet find themselves facing hurdles that their more socially adept peers escaped. Social skills became second only to language in the priorities to address.

I learned that every kid with autism was just as complicated and unique as all of the rest of us. One of the axioms around our office was that the child was the most likely source of the answer to baffling behaviors. The secret to why they did something was virtually never in a book or on some pre-made checklist. A trained intelligent eye needed to watch (and listen to) the world around the child and observe the world from the child’s perspective to see the reasons for what he did. Then we could find a way to address it that was likely to work.

I learned that every achievement can be a double-edged sword – every parent was thrilled when their child finally learned a new skill, or spoke that long-awaited first word. There would very often be calls to grandparents (and usually fruitless attempts to get the child to repeat the word on the phone), and smiles and wet eyes all around.

But every parent was also aware that a first word uttered at three or four (or later) does not often promise the same bright future as those that come at the usual age (about one). Those tears were often not solely those of joy.

I learned that all the kids, even those kids who were so severely impacted that that would never speak, had things to teach me. 

One Christmas when the twins were four, a little girl with very severe autism (as well as severe sight impairment) came to see our office Santa.  I had brought my typical twins to see the Santa. They had attended a few structured peer play sessions with this child and knew her a little bit. My (typically developing) daughter was frightened when she saw Santa and held back, not wanting to get on his lap. This nearly blind little girl with autism was in a new environment.   She had every reason to be the one holding back. Actually she had every reason to have a full blown meltdown.  I was astonished - but pleased - that her family had even attempted this, given her proclivities. Yet she calmly took my scared little girl’s hand and led her up to Santa’s lap.

I learned a great deal from my formal training and experience in the field about how to give the kids the skills they needed to be as independent as possible. But the lessons from the kids themselves were about life, and love, and what is truly important. I think of those lessons as their gifts to me – and I am forever grateful.