The Cost of Autism

accidentalexpert's picture

I apologize if my title is misleading.  Today, I'm not talking about what autism costs all of us in general.  I know the costs associated with evaluations and interventions can be staggering.

Today, I am going to drill down and be a bit more specific.  

You see, I have an 11-yr-old son with Asperger's Syndrome.  We have known this for six years, so I'm no newbie.  But we still find ourselves struggling daily to manage his challenging behaviors.

I can handle the eccentricities.  I find them very endearing.  But what has and continues to be a major problem is the behavior.  At the slightest provocation, he lashes out and becomes extremely aggressive.  In the last month alone he has destroyed some pretty significant things, including a laptop of mine, countless Transformer toys, one door, three TV remotes and several walls.   The cost alone is getting to us.  Not to mention the toll its taken on his three siblings and us. 

Right now, we have intensive in-home care providing us with counseling, interventions and general hands-on help.  We've employed just about every technique in the book.   We have an OT come to the house, we've done checklists, schedules, penny jars, CBT, RDI...the list goes on and on.

Two main problems get in the way.  One, his fuse is so short that episodes can go from 0 to 60 in a matter of seconds.  There is no time to defuse a situation, even when we know his triggers.  The funny thing is, once he lashes out he can usually process the event in question by himself.

The second issue is getting his buy-in.  He's learned a million and one coping strategies, but will not use them.  Tools to help him at school are "dumb."  He rips up schedules at the very suggestion of using them.  He won't comply with any sort of sensory diet.  His resistance is huge.  We have tried all sorts of incentives and rewards, but thus far nothing has worked.   

So today, I'm putting this out there to all of you.  Have any of you been through this?  What has worked and what hasn't?  

Help!


I resembled this remark from

seebert's picture

I resembled this remark from about age 9 until about age 22, with slowly decreasing frequency. I still have *occasional* times when I get extremely violent or suicidal or homicidal, but I recognize them and try to channel the energy in different directions now.

When one of these 0-60 episodes happens, the absolute first thing you need to do is get him away from your possessions and someplace safe. With younger children I've recommended a cheaper version of Snoezelen therapy. Something similar may work here. The key is that he needs *TIME* *ALONE* to calm down, and hopefully in an place where he can control light, sound, and temperature environmental variables.

Perhaps a room of his own, with padded walls, some form of entertainment system (NO SCREENS, but perhaps a *cheap* stereo system of some form), lighting (this neat gadget from thinkgeek is something on MY Christmas list- and looks like a *really cheap way to do snoezelen style lighting* for under $40 instead of over $1000), and some form of heater/air conditioner. Oh, and something he *can* destroy, endlessly. Foam rubber blocks?

For years it felt like I was

JohnSerra's picture

For years it felt like I was just banging my head on the wall, because no matter what I tried my now nine year old sons bad behavior would continue. So, I feel your pain... Then one day, it all started clicking when we started to use his own motivation(s) to promote the good, and ignore the bad.

More patience to you!!!

John

Through no fault of your

standalone's picture

Through no fault of your own, his needs aren't being met. He needs contant attention. He must be monitored at all times, even when things are going well. I realize the difficulty in trying to plan for his sudden outbursts. Have the activities he likes within easy access to him. To the extent you can and with his help, bolt down the things he likes to destroy the most. Tell him you love him. Keep your communication open and often. Hopefuly, you can get more peace.

I am curious to know if your

Julies_mom's picture

I am curious to know if your son is on any medication? My 8 1/2 year old daughter is becoming more aggressive and although trying to predict the outbursts and figuring out what is setting him off is all well and good, it's not always realistic!!! I have been working on this for years! Of course these kids "need" constant attention--how is giving that always possible?! My daughter has been on Respirdal for years with much success. The problem is the side effect(among others) is weight gain and she needs more for the maximum therapeutic effect which would cause more weight gain. So we are trying new meds. I would recommend Respirdal or Tenex if you haven't already tried. Much luck to you!