Passing For Normal

When you look at this picture, you can see just how happy Tad is.

LEGO, in their infinite wisdom (?), released new Batman sets in January.  He did get a new set for Christmas from Ressis and Oddball (thanks to a random set of flukey circumstances), but thanks to Brickipedia, I knew that the new sets were on their way.  And Tad had some LEGO gift cards left over from his birthday, so he was excited to go and get this particular set at the LEGO Store.  Except that when we got to the LEGO Store… they were out.

Tad was crestfallen.  I honestly didn’t know what he would do, so I explained to him that they were out, but we could order it there, in the store, and then LEGO would send it to our house.  (Pro tip – this is called “shop and ship” at the LEGO Store.  If a set is available online, but is not there in the store, you can order it at the store and they will ship it to you – with no shipping charges.  We’ve done this before.)  Tad moped around the store, carefully examining other displays.  I was afraid that he would just opt for something else, just to buy something – but then he came up to me and said, “Can we order the Batman, Riddler, and the Flash set?”

After wondering for several minutes if he was going to burst into tears, to hear him speak so calmly was a relief.  We got the set ordered, and I realized that, to the casual observer’s eye, and to the people working at the store, Tad was “passing” as completely neurotypical.  He was managing his disappointment like any “normal” kid would.

When the set arrived, Tad put it together BY HIMSELF (with a couple of assists on getting certain pieces to behave).

This was the third set he has managed to put together by himself (the first two happened right around Christmas with the new LEGO sets he was given).  This day has finally come, but not without some therapy work at ABA.  Yes, he actually worked on putting together LEGO sets and following the instructions in ABA.  The payoff has been tremendous for him.  He has such a sense of accomplishment about what he is able to do.  Now, if we ever end up with another large set like the Batcave or Arkham Asylum, I will probably have to step in and help, because I think he would get tired (and possibly frustrated at the lack of visible progress) before he was done.  But to have him be able to do these smaller sets on his own is just such a wonderful milestone for him.

I made the observation to Grandma, and it was one of those moments where I actually said something rather insightful about Tad’s development.  It was: “Tad passes as normal, right until the second that he doesn’t.”

I know that most people have a stereotype of what autism looks like in their heads, and it is often either Temple Grandin or Rain Man.  Tad is nothing like either of them.  He can go through a store with me, and pass himself off as a typical, maybe somewhat mischievous, 8 year old boy who doesn’t necessarily listen to his mother.  His behaviors don’t usually attract attention, and people who see him in passing, even week after week at church, are often unaware that he is on the autism spectrum.

And then you have the full-throated meltdown Tad, who can pitch a fit over losing a game on the Xbox, held his hands over his ears while we all screamed for the Seahawks and began screaming himself (“THIS IS TOO LOUD!!!  MAKE IT STOP!!!”), will become unreasonably frustrated with his siblings – even Thumper, and who MUST have certain bedtime rituals observed.  Now, I know that many kids do this, and they aren’t on the spectrum.  And many kids on the spectrum have more severe behaviors than Tad.  But I think it is slightly dangerous that Tad can so easily pass for normal until he can’t.  It means when that meltdown comes, more people are staring.  More people are asking questions in their heads, if not out loud.  There is more judgment and less empathy.

We have Tad surrounded by such a strong support team of family, friends and therapists – who all know him well – that there are very few times that I actually have to explain him.  Sometimes, like at the LEGO Store, I do mention his ASD and I get funny looks because “he’s behaving so well.”  And sometimes, I just need to get him out of wherever he is to calm him down without stopping to explain anything.

He is doing so very well in so many areas.  He is growing and developing, and so are we, in managing and helping him.  And there are days where I don’t have to stop and think about my life with his autism.

But it’s still there.  It’s not going away.  It rears up and bites us sometimes.  It’s like having a dragon on a leash.  We might be able to keep it tamed, but we have to be aware that it has teeth, fire-breath, and a loud Godzilla-like roar.  And we can NOT let the dragon off the leash and trust that it will be tame now.

This entry was posted on Tuesday, January 21st, 2014 at 12:41 am and is filed under Autism Adventures, Children.
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