Friday, February 19, 2016

Virtually Indistinguishable

Ethan had his eight-year checkup a few weeks ago, about two months late. We waited for too long in the exam room and then in came the pediatrician we've had since Anna was born. Ethan was sniffly but pleased to not need to get a shot. He began chatting it up with the doctor, asking him what the special light attached to the exam table was for and whether or not there was something secret hiding behind one of the ceiling tiles that looked different from the rest.

When Ethan was sidetracked for a minute talking to Chloe, the doctor turned to me and remarked, not for the first time, about how amazingly well Ethan is doing. "I mean," he said, "he seems virtually indistinguishable from his peers."

I knew what he was trying to say, even if it wasn't completely true (his developmental pediatrician, an expert in autism, has never said he comes across as completely "typical").

I knew that our discussions about him no longer needing therapies other than a social skills group, and being at or above grade level with no supports, and having friends and playing sports (despite some minor challenges) were very much reasons to celebrate. We DO celebrate. We never take the strides he has made for granted.

But still -- something about that phrase grated on me like sandpaper.

I don't want my son to be "virtually indistinguishable." I want him to be Ethan.

And I wonder: When did that be, or should that ever be, the end goal?

I've said this before and I'll say it again: I will never be, I can't in good conscience be, one of those people who states that everyone with autism is just fine the way they are, thank you, and shouldn't be forced to conform to the neurotypical world. It's one thing to say therapies are unnecessary when you have a quirky child with some restricted's something completely different when you have a non-verbal person who has trouble with the simple activities of daily life and is possibly harmful to themselves or their loved ones. Some therapies are very much necessary and tremendously beneficial. I'm not sure where my brother would be right now without the therapies he received over a number of years. It would not be a good place, I can say that.

But there is a danger, for those of us with children on the milder end of the spectrum. There is a trap, and I fell into it myself early on. It's that feeling of, My child is sooo close -- if I just do abc therapy or xyz therapy, then he'll be, I'll say it, normal.

It's this kind of thinking that leads us to inadvertently chip away at our kids' childhoods, because they're going to therapy sessions instead of being allowed to play in the park or even play video games. Interactions become less about quality time with the child and more about "teaching moments."

It's this kind of thinking that causes us to sometimes demand more of our kids than we might a typical child; to see every behavior as linked to their special needs rather than sometimes just "a kid being a kid." I remember one of Ethan's therapists once mentioning about the way we expect so much of the kids on the spectrum at school sometimes. We want every hello to be reciprocated with eye contact and a smile, when how often do typical kids actually do the that as they rush down the school hallways to somewhere?

It's this kind of thinking that makes us constantly see our kids in terms of what they aren't doing compared to their peers rather than what they are learning and doing, on their timeframe.

There is a kind of autism that is very, very difficult. There are people on the spectrum who struggle greatly, and their families struggle greatly. They need tools. They need support. This autism isn't all ugly, but sometimes it's easier to see the ugly side.

There is another side of autism that helps me remember the beautifully unique and wonderful things about autism. Yes -- there are wonderful things, traits I don't want to root out of Ethan.

I love his attention to detail and his appreciation for things others might never notice.

I love his single-mindedness and focus.

I love the way he has trouble lying and takes things at face value.

I love his honesty and the way he feels things so deeply (forget the robotic-like emotion clich├ęs).

I love the way he wouldn't dream about being truly mean to someone (except possibly his big sister).

In my faith, we talk sometimes about the Bible verse that calls followers of Christ a "peculiar people" who are set apart from the rest of the world. It always gives me pause, because as someone who doesn't like to stand out, rock the boat, or cause conflict, wanting to be peculiar isn't a desire I was born with.

But when I think about Ethan and autism, I see a little better. We are aren't here to demand the world meet his needs. There is a very real truth that he has to learn to get by, even with people who approach the world in a very different way.

But conformity is not the end goal. Not for him, and not be for me, either. Instead, how about we learn to be exactly who God called us to be?


FlutistPride said...

I am an autistic musician. Conformity is necessary in an ensemble setting to some degree, but we don't all play the same notes and rhythms. We balance and blend them while staying with the conductor. Therapy is like sectionals. Sectionals are awesome and very beneficial in if you have a good section leader. If you don't have a good section leader, they can be horrible and can even make your music worse. I have been in a variety of good therapies that helped me, so to speak, tune my flute rather than try to make it sound like a clarinet. There are ways to do therapy and the lack thereof well and ways to do not do it well. It's not always one thing or the other.

Deb said...

Wonderfully said! Thank you for sharing.