A Follow-Up…

Posted by on Mar 13, 2012 | 8 comments

A Follow-Up…

I’ve had a lot of responses to  yesterday’s post about Jack’s “new” diagnosis, and I’ve been thinking about what it is that’s bothering me the most.  A comment this morning hit it on the head:

“It sounds like your son has adapted to may things and so those who tested him determined his diagnosed could be ‘updated’. I think the autistic traits remain, the kiddos just learn to blend in to what is expected of them socially, etc.”

I read this and it struck me.  I’m afraid, because, in my mind, Jack hasn’t evolved out of autism.  I believe he’s every bit as autistic as the day he was diagnosed, he’s just older.

Jack is a brilliant product of Early Intervention, which means we threw all kinds of therapies at him as quickly as possible.  And you know what?  They worked.  But he still has autism, and that means several things.

It means that while he keeps up with his peers in school in terms of schoolwork, he simply cannot function in a school setting without constant supervision (he has a full-time SEA).  His teacher is out for the rest of the school year due to surgery, and I fully expect Jack to backslide until he gets used to the change.

Jack is easily overwhelmed by stimuli, and we have to plan our lives around that.  We rarely do things after school, as he needs that time to decompress from his day.  There are many places we cannot go, because of various things that bother/irritate/terrify him (like the buzzers at the hockey rink adjacent to the indoor playground).

He is hyper verbal, to the point that he thinks every conversation is directed at him, and if he has something to say, he will do anything, including screaming at the top of his lungs, until he gets the floor. We’ve recently realized that giving him simple math problems will buy us enough time to finish our quick discussion about what to get at the store.

Jack has to be constantly engaged at home or he gets restless.  This can mean anything from doing laps of the house to throwing his brothers down the stairs for sport.  His aggression has increased with his age, and in a house full of boys, that’s a scary prospect.

Jack does not understand social boundaries. He will hug and touch complete strangers, and not grasp why it’s wrong.  This particular behavior really scares me.

I honestly don’t believe Jack is “out of autism”.  I think he’s smarter than the ADOS.  I think he had a “good” day for his assessment.  I can tell you if they had assessed him based on his behavior on the way home, there would have been no question.

I identify with autism because I am an autism mom.  Yes, my child is high functioning, but he still has autism.  Every day brings a new challenge, and every day is exhausting. Jack and I both need the services he’s getting, and then some.  I’ve been waiting patiently for a year and a half to re-start his home-based ABA therapy, and the prospect of never getting it wrenches my stomach.

I realize now I’m clinging to the autism label as a lifeline, because that’s what it is.  I know my child responds to therapies, that part is obvious.  The prospect of facing a future without support, though, terrifies me.

I feel exactly the same way I did when Jack was initially diagnosed, except now there’s an additional layer of panic. I cannot let autism be taken away from us.  I just can’t.

A delicate balance.

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  • Gretchen

    We’re in this boat as well. I tell the testers, “this is like taking Tylenol to reduce the fever then taking your temperature and saying, ‘gee I must not be sick.’ “

    •  THANK YOU – that’s exactly it!!

  • You articulated your fear well and WHY losing that dx would be inappropriate. So, as always, you will fight to keep that dx. Because KEEPING the therapies is the most important thing.

    As I said yesterday Jack is an INCREDIBLE child. He has grown TREMENDOUSLY! Because of the therapies and his home life.

    But you dont outgrow autism. You don’t. You learn to adapt. You catch a kid on a good day. You get better at the social norm because you are growing, because you are getting services, because you are so smart.

    The ADOS isn’t for a kid who’s Jack’s age. It’s for a kid much younger. The activities done within are things he has PRACTICED therefore LEARNED. That’s teh magical thing about our kids. They’re so damn smart that when given all these ‘typical’ things to do? THey didn’t know how to do them but were taught and therefore they can do them now…but not the way a typical kid does. It’s a learned behavior!

    Kids who DO have autism but don’t fit into the OMG I CAN SEE IT FROM 20 YARDS AWAY RAINMANRAINMAN STIMSTIM NONVERBAL INSERT STEREOTYPES HERE category? Can EASILY ‘lose’ the diagnosis.

    Lets put it this way. Throw away the dx…treat him like a typical child…what do you end up with?

    A kid who regresses, who turns aggressive, who is a ‘problem’ child, who is resented, disliked, who is unregulated, who cannot figure out himself, who ends up with low self esteem, no coping skills, acting out, suddenly has problems in school, is isolated, is looked poorly upon by society, 

    Who would think all the hard work would make KEEPING a diagnosis difficult? Does the tester think the original dx’s were wrong? Or does he/she think he is CURED? Because last I checked? There’s no cure. So with those two options on the table…why is the label being pulled? Because he’s making progress?

    Let’s take a look at the 7-8 year when another developmental click goes off. Let’s take a look as puberty approaches. Let’s see when middle school hits and suddeny sensory things are ever MORE obvious and transitions EVERYWHERE.

    My suggestion? Video tape autism Jack. Show the reality. I know you. I know Jack. I know autism. Jack has autism. You kick autism’s ass. You also kick any (figurative) ass needed for your kid. So keep keeping some ass. Don’t let the dx drop. It’s not appropriate and it doesn’t benefit your child. 

    Still love you. Still sending you fighting vibes. And still can’t wait for you guys to be here so we can have a repeat of our last visit complete with your non-autistic kid and my ‘hardly autistic’ kid to ignore each other, scream as someone invades space *coughLIAMcough*, and stim around some planes! 

  • Jack could not have a better advocate. You are doing such an amazing job and all of the help that you have helped him get has done an amazing job. Just know, no matter what comes, you guys are going to take it and run with it and make it into the absolute best it can possibly be. 

  • Kate Kift

    Your son and mine seem very similar from the description above.  He has PDD-NOS.  D has a full-time SEA, he has to have constant supervision.  He is overwhelmed by stimuli, has no social boundaries and as of late been very violent — but only in school; we have no other children.  

    We are also in Vancouver, Canada.

    I have to admit, I am a little confused why the label is so important. In my mind D has a mild form of Autism, but it is still Autism.  When I talk to people, I use the label Autism, not PDD-NOS.

    He has his good days and (currently) bad months.  The struggle I have had over the last 2-3 years is probably no different to yours or any other Mum who has a child with Autism.  We have the been through the same emotions and trials — the only difference is that mine had (until now) a different label to yours.

    In BC, PDD-NOS is still treated as Autism.  You still get the same funding and same help.  I do understand that at some point this — like the US — may change.  This must be a concern for you, but at the moment this shouldn’t be.  I also know that the DSM criteria is also being amended to include Sensory Integration.  At this point, I know D will — like your son — probably be moved more into the Autism bracket.

    A label is just a label.  Your son is still your son.  The only thing in your life that should matter, hasn’t changed. The services he receives hasn’t changed.  

    Stress less about the label and more on your fine son.  Remember as far as your son is concerned he  doesn’t care what label he has.  Labels don’t validate us; children or parent’s.

    Perhaps you should enjoy the nice day — a rarity — forget about labels and remember the beauties of your quirky, loveable son.

    •  Kate – Thank you for your input.  I understand that PDD is considered the same as ASD in Canada, but until I can get a guarantee that when the designations change he won’t be left out in the cold, I’ll continue to push for what I believe is a proper diagnosis.  My hope is that all children will be brought under the ASD umbrella, but coming from California where things are constantly changing (and PDD is *not* covered for services/funding), I’m nervous.  I’m hoping for the best, but I’m nervous.
      And I don’t know where you are in Vancouver, but where I am, it’s snowing today LOL.  🙂

  • Dluvscoke

    I love misformichelle’s suggestion to video tape Jack. Observations should be done in various locations at various times of the day. I think video taping is a terrific idea.

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