Autism
After Max’s diagnosis, I attended an orientation for families of newly diagnosed autistic children at the Southwest Autism Research and Resources Center (SARRC). I was in a room with about twenty other parents who were clearly as terrified as I was.
The fear that I felt at the moment of the diagnosis was pure fight-or-flight terror, the same acute panic that one would feel if a Mack truck were bearing down on them. I came to recognize that look of terror in other parents of newly diagnosed children. Toni Braxton did some television appearances very soon after her son’s diagnosis, and she had the same deer-in-the-headlights look of having been suddenly plunged into total, overwhelming despair.
It was of not much comfort that the lady speaking at the meeting, who ran SARRC and had a 17-year-old son with autism herself, said, “Your kids won’t be class president or homecoming king; your kids will be picking up Arby’s and coming home to play on the internet.”
The truth, of course, was that not all of our children would develop even to that point. During my pregnancy, after our ultrasound had revealed we were having a boy, we kept saying, “I can’t believe we’re making a man! He could be President! He could become anything!”
Now our expectations and hopes lay on an entirely different plane, and our goals for his future were modest and short-term. At the time of his diagnosis, the autism specialist had told us “not to hang crepe yet,” so we tried to be optimistic. However, he followed that admonition with, “if he’s FIVE and still not talking, then you might have to start thinking about this on a more permanent basis.” The remark echoed painfully through my mind when Max’s fifth birthday rolled around.
The specialist, and others in our lives, really did not do us any favors by saying to hold out hope the diagnosis was not real. When you are in a position where you must accept a horrible reality that has just come into your life, the well-meaning tendency of others to downplay the news, or try to maintain a denial or false hope, makes the very necessary process of adjustment that much more difficult. When my mother was diagnosed with bone marrow cancer, a friend that I told had brushed the news off, saying, “Well, get a second opinion first. My mom was misdiagnosed with cancer once. It was really scary.” I still fantasize about calling that friend up now and saying, “Well, Jason, my mom’s been dead for five years. Guess that whole second opinion thing didn’t apply here. By the way, how’s your mom doing? Over her cancer scare yet?”
I knew very little about autism. I had a vague picture in my mind of children with vacant eyes, banging their heads against the wall. I thought autistic people were soulless, unemotional beings incapable of affection or much real humanity. So I was definitely reluctant to believe Max was autistic, because if the diagnosis was real, then that was where we were headed, and our child would be a shell of a person.
But Max was so cute! His eyes were hazel, like Conrad’s, and his hair was brown, but we were sure it would eventually turn black, like Conrad’s and mine. He had two dimples, both on the same cheek. He had a million-dollar smile. He would run around laughing, which I guess could be an effect of autism, but it was so adorable. His laughter was loud and contagious. He was so clever, too. Even though he didn’t speak, his eyes expressed complex emotion all the time. Sometimes he would tease me by intentionally touching an object he knew he shouldn’t, then slyly looking over at me for my reaction. He would bury his head in my lap, and lean his head in for kisses. Raising an autistic child is fraught with uncertainty. A parent can never know what capabilities the child will or will not acquire. But I never doubted, for a single second, Max’s intelligence or the depth of his love for us, even if he would never be able to say it.
If learning that my adorable, loving child was autistic was a surprise, it was only one of infinitely more to come. I imagine every child changes his parents’ lives in a thousand unexpected ways, and every child is full of surprises. In this way my parenting experience may mirror the typical one.
I found that the autism did not have any effect at all on my sense of parental pride. Our friend Tina, whose daughter was autistic, had once said that a parent of a special-needs child appreciates the tiny progresses in development so much more. When she told me that, I remembered thinking that was rather sad, to have to make a big deal of simple accomplishments that parents of typical children took for granted. But now that I am in that position, I feel overwhelming pride when Max puts on his own shoes or behaves well in public. It’s the kind of pride that makes my day, and I can’t imagine that any class president’s parent feels it more sincerely than I do.
Max attended two years of preschool in a public school. The district was reputed to be among the better ones for special needs programs, but the school was still not adequate to accommodate Max’s autism. Max was nonverbal and could be easily amused sometimes, so I was concerned that there were times when, unable to participate in a certain class activity, he would play in a corner without any real interaction. The preschool also went on constant field trips, one every couple weeks. It quickly became clear that Max was not able to go on most of these field trips, and if he did go his teachers were not able to keep him under control because they had to deal with all the other kids. His teacher would timidly approach me, “Can you come on this field trip?” A couple trips in a row ended with me, drenched in sweat, carrying him screaming to the car. I finally just kept him out of school on days that a field trip was scheduled.
After dealing with that frustration, we researched other schools that dealt specifically with autism. Fortunately, we live near the Chrysalis Academy, a private school with an extensively trained staff. Many parents in the more distant boroughs of Phoenix drove their children for hours each day to attend. When Max was accepted to begin in September 2007, we were thrilled.
The school’s yearly tuition is almost twenty six thousand dollars.
Conrad and I had set up a college fund for Max before he was born, but it was now abundantly clear that the money was crucially needed for specialized schooling.
“Early intervention” is universally agreed to afford autistic children their best chance at successful development. In this particular case, it would be his education at age five that could have the greatest bearing on Max’s future. We reallocated the college money to be used toward tuition for the school where Max would attend kindergarten.
My very soul was much less mature before I had an autistic child. Now, when I see developmentally disabled people, I don’t feel the awkwardness I used to feel. They’re someone’s child, just like Max is mine. Understanding this intellectually did not compare to the way I understand it now that I have Max in my life. I also tend to judge people a lot less. I realize that I had known nothing about what it is like to have a special-needs child. Even when I had thought I understood what it entailed, I really had no clue. I knew less than nothing, really, because I had so many wrong impressions of it. It made me appreciate how ignorant it is possible to be about other people’s circumstances. I approach things now with a much more open and empathetic mind. And I have had to accept that many, many other people are not able to do the same. I can’t blame them. Neither could I.
Max makes me laugh frequently. His peculiarities are numerous and, in many cases, very endearing. He can be hilariously fastidious. He will carefully take his plate to the garbage after every meal, methodically scrape it, and place it in the dishwasher. I smile every time I watch him do this, solemnly and ceremoniously. I had not known autistic children could make their parents laugh.
There is nothing like the joy that he exhibits when Conrad and I return from a trip, or even just an evening out. His face lights up with a huge smile – “as if Santa Claus just walked in!” I said to Conrad the first time it happened – and he begins to giggle and run around and around in circles.
He doesn’t know who Santa Claus is. I had so looked forward to having those Christmases with my child. It’s all different than I thought it would be. But I do get to see that Santa Claus glow on my son’s face, when he sees me come home. I know enough, now, to be so grateful for that.
