The Reason I Write

When it first became obvious to me that my son had autism, I really was not all that familiar with the condition. I knew one of my cousins had an autistic child, and I suspected that another cousin’s son was autistic, mostly because he was 3 and did not speak a word. I knew my own son was autistic because I happened to read an article about the fairly recently discovered info on the earliest signs of autism, along with witnessing the more obvious and commonly known sign of language regression. But I was pretty ignorant about what “autism” meant for my son.

My experience with autism up until this point had been Lifetime Movies, which made autism seem haunting, creepy, and mysterious, along with absolutely crippling, and devastating to the family. I also had a neighbor with an autistic toddler when I was thirteen- I would watch her 6 year old inside the house for a couple bucks an hour while she worked with her 2 year old. I remember the visual schedules around the house, and the PECS icons. The children’s mother was a very polite, cheerful young woman who worked diligently with her younger son, and was very concerned about her older boy getting enough attention. We played video games and played outside. I remember asking my father about autism. “It’s a terrible disease,” he whispered, I think feeling sad for the mother. “The children just… they can’t show love. They don’t know how. It must be very sad all the time.” These words came flooding back to me when I realized this “terrible disease” “afflicted” my son. I was incredibly depressed and actually pretty horrified and scared at all times for about a month.  I remember no one believing me about what I knew- that he was autistic- and so the whole time between when I knew and the diagnosis, I feared a second wave of grief starting all over again as I had to deal with my family’s realization and sadness. I wasn’t looking forward to it.

Despite his words eleven years earlier, my dad was the one who urged me to snap out of my depression. “There is nothing wrong with your son,” he said, firmly. “Even if he has autism, he’s a nice little boy and we like him.”

The only thing that kept me sane during this time was reading everything I could get my hands on. I’d like to say I was grounded by my interactions with Wylie, but realistically, I was hurt and confused, and often would do nutty things like get frustrated with him and try to yank his chin up to force eye contact. I would fall apart in front of him, and when he wouldn’t react to my outbursts they would turn into all out tantrums.

Everything I would read would sound… hopeless. Honestly. Over and over again, prognosis was variable, but pretty much, this was a “lifelong disability.” If you have no experience with disability, you don’t really see that this can still mean “a fulfilling, happy, healthy life.” You just see tragedy.

Most personal accounts I read on the net didn’t make me feel any better. With no experience to take with me, the stories of parents sounded incredibly depressing, and the personal accounts of those on the spectrum often seemed bitter and angry. I was scared for my and my son’s future.

By the time I got Wylie into an ABA school, I had calmed down a bit. I had read lots of stories on the internet, and a few things became a little clearer. First, it occurred to me at some point that when I scanned sad, sad stories on the internet, I wasn’t looking at a clear representation of ALL autism. It wasn’t a very good sample size. People are more likely to go on the internet to vent their troubles than profess their happiness. Likewise, I quickly realized, these people who vented their troubles still had good days as well. People with autism often expressed pretty justified anger at being treated like second class citizens, and being disparaged and dehumanized, often by the people who were supposed to love and support them the most. Being justifiably angry isn’t the same thing as being miserable. Parents who got anxious in the middle of the night and blogged their fears still celebrated their children’s accomplishments in the morning. My window into autism was a little foggy on the internet.

School began and it was an eye opening experience. I missed a lot of the isolation people experience when their child is diagnosed, and suddenly their lives become too busy for old friends and hobbies. Wylie’s ABA school is filled with kind and passionate parents, who all cheer their children’s progress. The parents helped change my perspective. Wylie does well in school, and I was encouraged to get excited about it. There are kids there who make slower progress- and you know what? They’re awesome. I would sit in and watch Wylie’s sessions at first and the other children would delight me. A girl was so stubborn and clever she could sense when eyes were off her in a millisecond and be off and in hiding with whatever toy she desired. An impatient little boy raced through his tasks without waiting to be prompted so that he could go play. An explorative little boy would wander away from his desk in an instant to watch something on someone else’s portable DVD player. My window was opening up.

A year later, I feel quite familiar with autism, although I’m sure as my experience expands as the years go by, my knowledge and opinions will evolve (or change altogether). My son has made tremendous progress and has amazed me every step of the way. Beyond that, I just adore the kid. I admire him. I’m definitely his biggest fan. Well. I claim the title, anyway, his daddy will have to fight me for it.

The things that scared me the most about autism ended up not being a part of my reality. I worried about connecting with my son- about us being a whole family. I would stare longingly at children talking to their parents, asking “why” and “what’s that” and having a back and forth conversation. I would stare jealously as if that would never be a part of MY reality. Wylie would ignore me when I came home and I felt like I was facing a lifetime of rejection from my own flesh and blood. But Wylie and I are deeply connected. We enjoy each other immensely. Not only do I love him unconditionally, I LIKE him so much- and he likes me, too. He loves me. There is coloring and cartoons and tickling and giggling, just like all the things I was so worried about missing out on.

Right now, we are quite happy. And so, I feel I should get out here and tell my story, so that when someone with a new diagnosis in the family is up at 3 am, they can find a little hope somewhere. My story is just one story, but it needs to be represented.  

"He doesn't seem autistic to me"

"He doesn't seem autistic to me" is one of those common phrases heard by parents of ASD children that can provoke all sorts of emotions. My fellow moms have expressed their anger, frustration, and sadness when an ignorant person makes a remark like this.

Today I heard this from the woman who runs Wylie's school- a wonderful BCBA who knows Wylie personally and often remarks how much he reminds her of her little toe-headed toddler who can also be spotted running around the building along with the other kids. She works closely with his team, monitors his progress, and has always been proactive when it comes to his behavioral treatment plan. When she said this to me, I was mostly perplexed.

I think she's wrong, by the way. And I argued with her. I’m not even that puzzled that a professional might say something like that about my son, but. I find it strange. I find it strange because there are other MUCH more high functioning children attending her school than Wylie. I think I have to pull the other parents aside and figure out if she’s ever said such a thing to them, as well. HAHA! The conversation I had with her went something like this:

“What specifically do you think is missing from his characteristics to warrant an ASD diagnosis??”

“Well. I just wouldn’t call his problems ‘pervasive’ in the strictest sense. I think he has more of a language disorder than anything else. Socially he’s reserved, but not exactly withdrawn. He’s laid back. Aloof. Most of the kids I see are either withdrawn, overwhelmed to the point of not being able to interact, or socially anxious. That does not describe Wylie. He just isn’t really motivated to be social.”

“Hmm. It’s a spectrum disorder, right? It could manifest differently with different kids, right?”

“Yes… but he just is getting everything academically. Everything we ask him to do, he does. He understands everything.”

“Hmm. He’s 2 and he doesn’t really get 2 step commands. It took us a while to get 1 step commands.”

“Language issue.  Sensory processing issue, maybe.” (For the record, she has basically conceded that he has social, language, and communication dysfunctions at this point… now she’s bringing up sensory processing. Sounds… a lot… like autism… to me…)

This woman and my developmental pediatrician are, like, totally into each other, too. And my developmental pediatrician is always seeing Wylie in the WORST light, and seems to always bum me out using a pretty grim deficit model to describe him. Heh. They take each other’s opinions very seriously, and yet they are at opposite opinions of Wylie.

I’m just confused. It is really interesting how two different people looking at the same child from different perspectives can come up with completely different conclusions about him. I don’t find the BCBA ignorant or dense or less than diligent when it comes to her research or her ABA treatment. She has actually persuaded me several times when I challenged her course of action (most recently she has been suggesting replacing some of his one on one DTT (discrete trial training) hours with social groups and I originally opposed). It IS true that the people here seem to be more on the severe end of the spectrum. I don’t exactly see a lot of aspies at his school. Wylie is obviously intelligent, and even Mr. Pessimistic Developmental Ped has used the word “gifted” to describe him. He has no splinter skills and does not appear to be “profoundly gifted” or a “genius,” but he’s bright.

“I really think he needs to be in regular pre-school. I would even suggest not telling them about the diagnosis. I think he will easily get the academics of it. We are teaching him how to learn from his peers. The concern I have with Wylie is that he just seems like he could really care less about social interaction, and some pre-schools aren’t going to push that interaction. He doesn’t really have any serious behavior problems. We could go interview some schools together, tell them he’s shy, and see if they can pair him up with maybe a bossy older kid with an assertive personality to lead him around.”

Uh. Hmm. A little dumbfounded. But I think about it. Perhaps some preschool director WOULDN’T realize Wylie isn’t quite sure who “Mommy” is. I’m not really against hiding the diagnosis in this case, but it doesn’t really sit well with me that A) I think his therapist actually doubts his diagnosis at this point and B) I’m thinking he really wouldn’t “pass.” Then again, this isn’t really something that needs to happen tomorrow—I don’t think she is completely off base when she says he may be ready for preschool by the time he’s 3. He’s definitely a smart cookie and his language isn’t stagnant—he makes spontaneous requests for familiar items, his vocabulary has expanded since his 2^nd birthday, he sometimes (rarely) strings words together… his stims are still quite severe, he screams and squeals and jumps and jogs in place… repeats nonsense phrases like “Tickletickletickle DAH… tickletickletickle DAH…” I could see him distracting a whole classroom.

Oh, anyway. Who knows. Structured Preschool with academic credentials sounds a little expensive, too. I’ll start looking into it. I still haven’t really perfected his current treatment right now—  I still want to look at some additional speech therapy.

It’s a lot of work. Wylie, Mommy’s not trying to rob you of your childhood, I promise. But who are you kidding, you would waste a lot of it watching Spongebob reruns if it weren’t for me.