Saturday, September 12, 2015

And Then There Were Two.

The signs have always been there: Unusual, long-term obsessions with things like men with beards, vacuums, trains, the Titanic, Spiderman, Iron Man, and most recently, Freddie Mercury; extremely limited (and sometimes strange) food interests (for example, hot dogs with jelly, or subsisting almost solely on chicken nuggets and Ramen noodles for years); extreme difficulty connecting to his peers even in preschool and throughout elementary school. A rare acuity for recognizing music, and for hearing even the most subtle instrumental voices and harmonies buried within complex orchestral scores, being brought to tears by certain musical pieces even in infancy.  Tics, speech was all there.

Yet, in spite of the flashing red lights and every warning sign short of a billboard appearing in the front yard, in spite of having a second son who has had an Autism diagnosis since the age of 5, we missed the mark, and Joey carried a mishmash of other diagnoses throughout all of elementary school and junior high, ranging from anxiety, to Tourette Syndrome, to ADHD, to depression.

The problem is that he was just too smart. He was too good at coping, and adapting, and compensating for his struggles just enough that even when we had him tested during the 6th grade for psychological challenges, he dodged the "Autism" diagnosis somehow (I'll tell you how in a minute) and ended up with a list of other diagnoses instead.  But it couldn't last forever.  Finally, last spring, as school got harder and bullies got meaner, Joey couldn't cope and adapt his way out of his challenges any longer, and things fell apart for him, so severely and dangerously that we had to send him away to a wilderness treatment program, where he ended up staying for 101 days.

While he was there, we sent another psychologist up to do a new battery of testing, and finally embraced an accurate diagnosis:  Joey, like his younger brother Ben, has Autism.

So why did it take us 15 years to get Joey diagnosed?  In the years since Ben was diagnosed, I've talked to dozens of parents, and friends of parents, who have been told that their child (or their friend's child, or their grandchild...) might have autism, and invariably I hear this response:  We (or "our friends," or whoever it is...) don't want to have our child diagnosed with Autism, because we don't want our child to be labeled.

I think that is a noble sentiment. I really do.  But forgive me for being blunt and a bit harsh when I say this: it is also garbage. Here's why:

First, any child who truly has autism is already struggling.  The diagnosis won't suddenly cause a new problem; it will explain an ongoing one. If your child is in school, then I guarantee that he/she is not getting along with peers, is not succeeding in the traditional classroom, is experiencing some kind of academic deficits, is probably disrupting the learning environment in some way. If he/she is not in school yet, then the problem is happening in play group, or at church, or just among family members. But the problems are already emerging.  If you think your child is not already being labeled, you are delusional (again, I apologize for being harsh. This is intended to be a wake-up call).  And that label is being whispered among classmates, across dinner tables, to other mothers at playgroups, and during faculty meetings. That label may (sadly, tragically, but truly) include words like "Trouble-Maker," and "Problem-Child."

When Joey was in the 3rd or 4th grade, he came home sobbing one day because a couple of his so-called (and only) "friends" told him that their moms had said that they couldn't play with him anymore. I called one of these moms to see if this was true, and she told me that they had decided that they weren't going to let their kids play with Joey anymore because they just didn't think he was a very good kid. She wouldn't even explain to me why, or tell me if anything specific had happened that I could talk to Joey about. They had just unilaterally decided that my child was "bad," and that their "good" children shouldn't be unduly influenced by him.  My child wasn't bad. He had autism. How sad that I couldn't explain this then (and yes, I still whisper unkind words in her general direction whenever I see her at community functions or drive past her house. What kind of judgmental-self-righteous-waste-of-human-flesh does that to a little child?? I really need to work on forgiveness. Maybe tomorrow).

Today, where 1 in 68 children across the United States (and that number is 1 in 54 in Utah) are diagnosed with Autism, and where extraordinary people like Temple Grandin and Carly Fleischmann have helped to make such advances in Autism awareness;  where the diagnostic criteria for Autism really do make it clear that Autism is a broad spectrum of both struggles AND strengths, the "label" of Autism is far different from what is was 50, 30, or even 15 years ago. Today it is a "label" that invites compassion, patience, and understanding.

Second, that diagnosis of Autism is the key to services that your child desperately needs. Without it, you may get some help in the form of a 504 plan (a few educational accommodations for extra time on tests, or sitting closer to the teacher) if you can get someone to slap together some other diagnosis for ADHD or whatever else you think might be better than having Autism.  But that won't help your child. My heart sinks when I consider that with a proper diagnosis in 6th grade (or even earlier), Joey could have accessed resources for social skills, behavioral skills, psychological support, and anything else that popped up over the years. Instead, he was on his own. And eventually he crashed.

Let me tell you this: You don't EVER want to get to the point where you are so desperate to save your child's life that you have to send him away to a wilderness treatment program. That first night, when you know he is on a dark, cold mountain, crawling into a sleeping bag, not filling his tummy with the snack he has eaten every single night since he was five (because routine is everything to him), not being kissed goodnight, frightened and alone among strangers, that night, you will not be able to get into your own warm bed. You won't get into your own bed for days.  You will ache with worry, wondering what you could have done differently to save him from being sent away. In Joey's case, maybe we could have gotten him diagnosed earlier so that he could have gotten the support and help he really needed.

Third, if you avoid the "label" of Autism, you are sending a message to your child that Autism is something you are ashamed of, and something you are trying to avoid. Look: If your child has Autism, then he/she has Autism. Avoiding it won't change it.  If you see a cancer growing on your skin, you can avoid going to the doctor for as long as you want, telling yourself that as long as you don't go, then you don't have to know that you have cancer. But guess what? You still have cancer, and eventually you are going to have to treat it.

If your child has the signs and symptoms of Autism, then the time will come, sooner or later, that he/she is going to be diagnosed. My husband--a clinical psychologist who specializes in psychological testing--has diagnosed many, many adolescents and even adults with Autism much later in life than they should have been diagnosed.  Why? There are plenty of reasons. Some slip through the proverbial cracks as children. Some have been misdiagnosed earlier in life. And some had parents who just didn't want to know. But eventually the diagnosis always comes.  Do you really want to plant a message that when that diagnosis comes, you will be disappointed and ashamed?

Here's a thought: Face it head-on. Embrace it for what it is. The sooner you do, and the sooner you access help and services, the better your child will adjust, and adapt, and thrive.

And here is where I become the proverbial pot calling the kettle black. Here is where I speak from experience, as one who knows too well.  Why wasn't Joey diagnosed when he should have been? Primarily because we didn't want to know. We didn't want two sons with Autism. We couldn't believe that was possible. And so we convinced the first psychologist who tested Joey that Joey was much different from our other son who did have Autism, and therefore Joey must have something different. In fact, we convinced ourselves that he must have something different. It couldn't be true. We could not have been more closed-minded.

It's true that our boys are different. They have different deficits and different strengths. Autism is a spectrum. It looks different for every child.  But the facts are irrefutable, and knowing is so much better than wishing for something different.  Finally Joey is getting the help and support he has always needed.

Autism is not his label. It is how he is learning to finally live his life. And after 15 years, it's a wonderful thing to see.

1 comment: