Prelude: Although this is a serious topic our experiences are not without humor. So please know that as you read this it is completely okay to laugh. While living this was difficult for us in the moment being able to laugh in retrospect saved our sanity. Laughter really is good medicine.
The Story: Having a child diagnosed with autism can be very upsetting. However, in the case of my family it was actually a relief. Let me explain.
When my son was born my daughter was 8 years old and I thought I knew a thing or two about children. But as is the case in most families Alex was nothing at all like his sister, Whitney. She had, for the most part, been an easy baby and a delightful child who sang herself happily to sleep from the time in her crib until she was reading bedtime stories to herself. Alex, on the other hand, was definitely not easy. He cried a lot and soothing him was difficult. I finally put him in an infant sling that snuggled him close and quieted him. I wore it everywhere until he was simply too big to fit inside.
Whitney started talking before she was a year old. By Alex’s first birthday he wasn’t making a sound – not even babbling. In truth, he had suffered so many ear infections we thought he might have a hearing impairment but two separate hearing tests didn’t agree. As it turned out his first words were clear as a bell when he was nearing the two-year mark. I was chirping happily to him as I prepared his lunch when he said, “I don’t want a G**D**** peanut butter and jelly sandwich.” I was startled but delighted and called his dad at work to say, “Alex is talking – just like you!” The only down side was that I couldn’t brag about his first words to his grandparents – I suspected they wouldn’t have been as cheerful as I was about his choice of first words. After that he proceeded to talk almost as if he’d been practicing all along. He’d certainly been storing up quite a vocabulary.
Whitney had adored singing silly songs, nursery rhymes, and coloring. Alex wanted no part of any of that. In fact, once when he was a little over two and had been miserable most of the day I was trying desperately to calm him down before putting him to bed. I was rocking and singing softly to him. He reached up and covered my mouth with his little hand and said, “Make no music to me.”
Alex was overly sensitive to lots of things: lights, sounds, smells, and textures. Going to a department store with him was impossible as he would hold his ears, fling himself down, and scream that it was “too loud”. I finally figured out that it was the buzz of fluorescent lights that he couldn’t abide. Strong smells at the dinner table would make him heave or completely lose it. So broccoli and cabbage never went into serving dishes on the table or else…… He could not bear being wet. Even a drop of water on his sleeve when washing his hands would send him into a complete tizzy. The same went for any thing sticky or smelly or whatever he considered offensive on any piece of clothing. Often by the day’s end he would have gone through so many clothes that he was simply walking around naked and I was too tired to care. The evening our minister stopped by while we were having dinner he saw our family being completely ourselves – which included Alex standing on his chair at the dinner table stark naked. The minister was a bit taken aback but amused. He said, “So this is dinner at the Griffin’s.” Yep. In all its glory!
And speaking of Alex’s dislike of anything wet – imagine taking this kid to our neighborhood pool. He would resist being taken from the car and then shout all the way up the entrance walk, “It’s WET!!!” No kidding. It’s a pool. To him it was a punishment. He saw no fun in the adventure at all. The kiddie pool simply did not happen. He wouldn’t have it. Swim lessons were torture for everyone including the poor instructor. When he finally consented to walk down the steps and into the pool with his sister there was no playing shark or Aquaman like the other kids. No sir! Alex declared himself a fuse box that blew up if he was splashed. Forget playing. He just stood at the most shallow end of the pool and made blowing up sounds until I released him from his misery and took him home. As far as I know he never learned to swim.
Alex had a been gifted a darling double breasted camel colored woolen coat and hat but every time I put it on him he would become as stiff as a board and fall face forward onto the floor screaming. At one point when I pulled it from the closet he began protesting, “That coat makes me fall down!” So off we went to Sunday School on freezing cold Sunday mornings with little Alex wrapped in a blanket. When folks looked quizzical I just said, “His coat makes him fall down.” That explanation changed their expressions alright! It didn’t make anymore sense to them than it did to me but I learned there were just some battles you couldn’t win. And when it came to Alex I was losing.
I can recall reporting my many concerns to the doctor: how little Alex slept and how he often banged his head so severely that I was afraid he was going to damage his brain (not kidding). At times he would pull his hair, scream and fall on the floor for no apparent reason. And he often rocked himself back and forth for long periods of time. Once when he was about three I said to the pediatrician, “He reminds me of kids with autism.” She rolled her eyes and said, “Oh, no. He is way too verbal to have autism.” As for his lack of sleep, I realize in retrospect that I was not firm enough on this point. I had the support of two sets of grandparents that allowed me to catch up on my own much needed sleep. If it had not been for this relief I probably would have been way more insistent if not a little crazed from my own lack of sleep.
We decided to enroll Alex in Preschool three days a week to encourage interaction with other children. He hated it. I drove him there and had to drag him out of the car every single time from September through December. In January he began to scream while getting into the car at home and all the way there about how he didn’t want to go and that he wasn’t going to get out of the car. However, when we arrived he would let himself be helped out of the car by staff, sadly resigned to his fate. His Preschool teachers reported that he often did not participate in activities and did not play with the other children. This did not bode well for school.
Interacting with Alex was difficult and perplexing. He seemed to prefer to be alone, ignoring us when we tried to participate in whatever he was doing. There were so many times when he would not respond to his name that once again we considered hearing problems. But yet another hearing test did not bear this out. If I managed to have his attention and I attempted pretend play with him he looked at me as if I had two heads and refused to engage.
Alex obsessed about dinosaurs and so we found lots of books about them in an attempt to interact with him. He was like a sponge and soaked up so much information about them it was amazing. He seemed to retain every name of every dinosaur in every book that he saw including the facts peculiar to each one. Consequently, he began to talk incessantly about dinosaurs. In fact, if you wanted to have a conversation with him it had to be about dinosaurs. Otherwise, he was completely uninterested in you or anything you had to say. Riding in a car on long trips was particularly challenging as he talked nonstop about dinosaurs to the point that I would have to say, “Alex, we are tired of talking about dinosaurs right now. So let’s not talk about them for 10 minutes.” Alex would stare at the clock until exactly 10 minutes had passed at which time he would begin – right on cue – talking about dinosaurs again. And try as you might you could not engage him in conversation about any other subject during that 10-minute lull. He was too focused on the clock and the next thing he wanted to say about dinosaurs.
Once Alex asked me if the house caught on fire would I run in to save my children. “Of course I would!” I replied – thinking that he needed to be reassured of my love for him. However, he scoffed and said,
“That is because you are a stupid human mother. Dinosaurs would not risk their lives to save their children. They would just have more children.” I was stunned and then tried to explain that I would brave the fire because I loved my children. He was unmoved by my proclamation and said flatly,
“You are a stupid human.” I could not think of an appropriate response and decided I would just accept his label. I worried more that he was unmoved by love.
Alex often had meltdowns in public places. Waiting in line at the grocery store was a prime spot. In fact, any sort of line was a problem for him but that took a while to figure out on my part. The fact is that his meltdowns mostly seemed without rhyme or reason. Bodily removal made the situation worse and it took forever for him (not to mention ME) to calm down. Eventually I realized that it was better to just let him fall on the floor and do whatever he needed to do while I did the best I could to ignore him. When the check out was done and I announced that it was time to go he would get himself up and leave without a word. This was much easier on everyone than any other remedy. Trust me on this. However, it took every ounce of patience I had to let this happen. I felt sorry for his clear misery and had no idea how to help him. And let me tell you that enduring the scrutiny of other patrons was beyond humiliating. There was never a kind look or word from anyone. Most people stared wide-eyed and diverted their eyes quickly if they thought I was looking. My favorite things were suggestions from other shoppers about what I “ought to do” or “if that was my kid I’d…..” (and the recommendations usually involved something physical – which I had learned early on only made matters much worse). Clearly, my parenting skills were on trial and judged as sorely lacking. At one of my lowest moments a particularly annoyed shopper turned around in the line and began spewing a torrent of vicious proclamations regarding me – the unfit parent and my son – the screaming demon destined to become the Antichrist. Strangely, I felt absolute calm wash over me, which allowed me to smile serenely and say, “I should give him to you so you can raise him. I’ll bet you’d beg me to take him back in less than a week.” It was definitely not my proudest moment as a parent.
Kindergarten was baffling for Alex and for me. There were lots of misunderstandings, worries, and unhappiness. On one particular day the teacher called me to report that Alex had refused to be in her Annual Spring Play. Furthermore, he had insulted her by saying; “I don’t want to be in your damn stupid play” which let me know he had very strong feelings about it. I told her I would talk to Alex. That evening I said, “Alex, your teacher says you don’t want to be in her Spring play.” (I had decided his use of a curse word, although a crime in the teacher’s judgment was best left alone.)
Alex responded emphatically, “I refuse to be prey!” Hmmmm. I had to think about that for a minute. And then it occurred to me what he meant,
“You mean that the other characters in the play are bunnies and chicks – and they are prey animals, right?”
“Yes” was all he said. And he was quite definite about it. I asked him what animal he would like to be and he replied without hesitation, “A velociraptor!” Hmmmm. I knew this was his very favorite dinosaur and I was also pretty sure his teacher would not consent to such a foreboding presence in her sweet play about Springtime and the Easter Bunny. After some thought I said:
“Well, there are no extinct animals in this play. So maybe you can think of another animal that you could be.” He considered this problem for a moment and then said,
“I could be a frog. They are camouflaged.” I nodded and said that we would talk to his teacher the next day about this possibility. And we did. Of course, she allowed as how she had never had a frog in her play. But when I explained that Alex “refused to be prey” she was stumped. In the end she consented to adding a frog to the cast. On the day of the play, she rolled her eyes and told me that after Alex had decided to be a frog two other boys wanted to be frogs. Now she had three frogs in the play, which was a bit of a revolution for her. It seems that Alex was able to broaden everyone’s perspective in his own quiet way.
In my mother’s heart I had sensed early on that Alex was not like other children and I worried what that could mean. I tried to talk to his pediatrician about my concerns but was brushed aside: “Don’t compare him to his sister.” “He’s different.” “He’s just eccentric” – which I knew were all polite ways of saying what other folks were already thinking about my child: “he’s weird”. At some point I stopped expressing my concerns to doctors because I felt as if I was always complaining about Alex. And I didn’t want the doctors to think I didn’t love him. By first grade his differences were so pronounced that this teacher suggested we have him tested. Several days of testing resulted in a diagnosis of “Attention Deficit Disorder – Over focusing” which at least allowed for accommodations in the classroom to help him with transitions and testing. But as the years passed the social gulf between Alex and his peers became so wide that his ADD diagnosis did not explain what was really happening. Alex was ignored, ridiculed, and bullied constantly by his peers. I felt heartbroken and helpless. After one particularly upsetting incident in seventh grade we decided to remove him from public school and home school him. With the support of grandparents this went well enough. I made a daily schedule which it turns out Alex followed to the letter – meaning that if his grandparents invited him to lunch he would refuse to go – even to his favorite place – all because it was not on his schedule. I learned that I had to add to his schedule: “if your grandparents invite you to lunch it is okay to go with them”. I didn’t know whether to be worried or pleased at this strict rule following.
By the time Alex was 14 his sister was in college and had attended a workshop at the TEACCH Center in Chapel Hill, NC. TEACCH stands for Treatment and Education for Autistic and related Communications Handicapped Children – which is why folks just call it TEACCH. (wink) After the workshop my sweet daughter sent me an email that began: “Momy, I don’t want to say there is something wrong with my brother but let me tell you about Noah.” From there she bullet pointed every single problem that we dealt with on a daily basis. I was stunned. When I recovered I called TEACCH and made an appointment. The first visit took all of twenty minutes for them to talk with us and then set a date for further testing. I didn’t understand then what I clearly know now: they took one look at Alex and knew he was “one of theirs”. In the end – or perhaps I should say “in the beginning” – with the diagnosis of Autism Spectrum Disorder we began a new way of living with Alex. We learned how to communicate with him more effectively and to better understand his behavior. It was as if someone had given us a key to unlock the door to a better world. To be sure we all had a lot to learn but we were on our way.
After the TEACCH professionals had delivered the diagnosis to my husband and me they asked if we wanted to tell Alex or if we would prefer they talk with him. Having had many unsuccessful and even disastrous conversations with Alex in the past we thought it would be best if they discussed his diagnosis. Once they gave it a name Alex nodded and said, “I knew something was wrong with me but I did not want to worry my mother.” How insightful and heartbreaking his words were to me. The kind professionals quickly assured him that there was nothing “wrong” with him – rather Autism is just another way of thinking and being. And AMEN to that!
Post script/FYI: Alex has given his permission for me to share this story. Thank you, Alex. You have taught us all so much. I love you.