Crossing Borders.

Quick, my parent friends of ASD kids –  name three neurotypical things your kid does.  You’d think you could say: (1) eat; (2) breathe and (3) poop – but even that is basically different.  Yet still, I feel like my son often crosses the border between ASD and to NT and back to ASD again…

I like him just the way he is.  I’m glad  he is not neurotypical, you know?  In a lot of ways, his differences make him more mellow, innocent, brilliant, hyper-focused and interesting.   Sure, we have hardships they will never understand.  But we have joys they will never know either.

I often watch with wonder at my child.  There is a saying that if you’ve met one person with autism, you’ve met one person with autism.  In other words, everyone is different.  You cannot generalize from one experience to the next.  Obviously, there have to be some commonalities.  That’s how you make a diagnosis.

How does my son, more often than not, fit the commonalities?

He fits here:  He spoke fewer words when he started talking. He was the king of echolalia for a long time and still works largely from scripts.  He misuses his pronouns,  “You want” instead of “I want”.  He repeats the same question or sentence 10 to 50 times in a few hours.  He shouts and screams inappropriately.

He is fascinated by watching spinning motions in tires, lights, any moveable object.

Pushing buttons for lights and spinning tires.

He is non-social.  He prefers objects over people and ignores the vast majority.  Sometimes, he become unnaturally interested in a stranger asking me things like “Who’s that?” in front of them, invading their personal space with the stare of someone examining an object.  With me and his dad, he is overly affectionate.  He wants to be held and told he is loved – continually.  With all people he knows well, most of the time, he talks non-stop.

If he is over-stimulated, there will be meltdowns.  Less as he gets older, but they are heart-wrenching, inconsolable, soul-draining cries.

He obsesses on a subject from 2-8 weeks at a time on average and usually groups together the obsessions in twos or threes.  Currently, outer space, Disney Cars, and Jack’s Big Music Show.

3, 2, 1, hat off!

He does not like his head touched.  He will not wear hats, sunglasses, earbuds, headsets and hates his bicycle helmet.  It is painful for him to have his hair combed or his teeth brushed.

He thrives on routine.

He is a incredibly picky eater and must be fed by another to get more than a bite down.  Food has to be cut in the right proportions and handed to him for examination before consumption.  He will gag if he doesn’t want to eat something.

He does not quite always fit here:   He was not late to start talking and never regressed.  When prompted, he can use a sentence in an appropriate fashion.  He makes eye contact probably, 60-70 percent of the time if you know him.

He does not spin, rock, flap, shake or have any tic-like tells.    He does not line up objects (unless he is counting beans to 100 – I’ve discovered).

He likes to choose his own clothing and loves to listen to music.

He can sit up to 30 minutes at a table and do homework tasks that involve writing, reading, and math.  He loves to read a book [wait – that might go up above].

He rides a bike, runs and throws a ball without any difficulties (other than a desire to throw a ball up in the sky instead of to someone on occasion).  He can do sit ups, jumps and loves to dance.

He will follow an instruction to pick up his toys after I “yell” at him to do it.

He loves to play video games.

He can use a computer and navigate the internet to get to his favorite websites without any assistance.  He plugs in and uses peripherals to a laptop through USB connections with no help.

He plays quietly by himself from five minutes to a half hour at a time 3-5 times a day.

He knows when I’m sad and does everything he can to cheer me up.

He shares laughs and jokes.

He knows how to manipulate both his mom and dad.

"Daddy to carry"...

He hates to do homework.

He loves to show off.

So what does that say?

It makes me wonder how much of his therapies, school and day to day influences have to do with the way his personality is shaping up to be and how much is the progression of aging and developing naturally.  How much is medication and how much is knowledge?  What kinds of interventions are appropriate for him and how much should I let be.

There are questions that only I can answer.  If I choose the wrong direction, I can stunt his growth.  If I choose the right direction, I will help him flourish.

In what direction?  Neurotypical?  Not a chance.  That’s not who he is.

In the direction that will make him the happiest, smartest and most comfortable that he can be.

There is no formula.  There are no clear answers.  And everyone’s a critic.  But I know my son.  And I think that together, we’re doing the best we can.  Guess what?  That’s good enough.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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15 Responses to Crossing Borders.

  1. kcunning says:

    Heh. The times when my son is most at his most natural is when he’s bantering about sports to other sports fans. It’s shocking, actually, to hear them trade stats and talk about touchdowns that I know none of them have ever seen.

    The same goes for video games. Get some gamers together, and they’ll talk about scores and achievements and unlocked cars or gear or whatever. You’d never know my son has any issues.

    Since most of my friends are sports nerds or gamers, that might be why most of them still don’t believe that there’s anything wrong with Jake.

  2. I HATE HATE HATE that question… “how much is natural development and how much is therapy/meds/schooling/etc.?” I ask myself over and over and question the balances… do we need more of this therapy? Less of that? Can we cut this one out? What will happen if we do? What if? What if?

    If I could get back all the sleepless nights I have spent wondering over those questions… wow.

  3. blogginglily says:

    I really wonder sometimes at Lily’s diagnosis. Obviously she has issues, but she doesn’t fit the mold in a lot of ways. I have often considered writing a very similar post. . . if for no other reason than to have a handy reference guide as to exactly where Lily fits and does not fit into the spectrum as I know it.

  4. Your boy sounds SO much like my boy! I totally understand the “crossing borders” line of thought! It’s what keeps me constantly scratching my head and wondering what is really going on!

  5. Lizbeth says:

    I’ve often thought of this as people sometimes say to me, “Really?? He looks so normal!” And then I have to tell them we’ve been working at his since he was three and we’ve come a long way. I’ve often wondered……

  6. Sue says:

    Uneven skills are a fact of life here too and in fact contributed to lack of a correct diagnosis for so long especially since she did not have a full workup initially. Truthfully, the gains are probably both natural development and therapy.

    Karen, I absolutely love your second paragraph.

  7. This really made me smile. “Dad to carry”, he’s so stinking cute in that picture!! (In our house it’s “Mami/Daddy hug” **lol**)

  8. Sandra says:

    “There is no formula. There are no clear answers. And everyone’s a critic. But I know my son. And I think that together, we’re doing the best we can. Guess what? That’s good enough.”

    Amen.

  9. eof737 says:

    That is an impressive list with things on it that all of us have as a habit or quirk… He is still the most adorable kid and you are the perfect champion mom! 🙂

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