Things We Try To Avoid

Day 22:  Things We Try To Avoid

As I was thinking about some of my past posts, I hope I have not painted Coleman to be this awful child, impossible to please, tantrums at every turn.  That is very much not the case.  He has outbursts and meltdowns just like every other child.  And he has his moments of absolute joy and tenderness just like every other child.  The latter outweigh the former, overall, but for many children on the Spectrum, the vast number of aversions and resulting meltdowns can be daunting. 

Most meltdowns for us, as you likely have gathered, result from a change in Coleman’s routine, and most often when he has not been prepared for the change.  But there are other times when he will be perfectly happy, playing and scripting along to his shows, when suddenly he gets very quiet.  You can see he is lost in thought, staring at nothing.  And then he is back, but now he is upset or sad about something.  It’s as if he has replayed an unhappy memory in his mind, and suddenly it’s become fresh again, like a new wound.  Times like this are crushing, not knowing what he was thinking about that prompted the anger or sadness.  And if you ask him, he just looks at you teary eyed and says “No! Just go!”  One minute happy, the next sad.

Most mood changes, however, can be pinpointed to exactly one thing, one item, word or change, that behaviorists would call the antecedent.   To correct the behavior, look to what caused the behavior.   I think if I was a BCBA (Board Certified Behavior Analyst) my life might be a lot easier.  But alas, I am not, and I am not conducting functional behavior assessments around the clock.  The fact is, many of Coleman’s meltdowns are completely unreasonable to us – but to him, they are not only meaningful but also debilitating.  “Please help me because this makes me sad/happy/uncomfortable and I just cannot move past it” is what we need to try to hear, instead of “Don’t do that because I don’t like it.”  And there is a difference between not liking it and not being able to get past it.  So we try pay attention to what’s going on in his surroundings, try to make changes as we can, try to incorporate helpful suggests from the real BCBAs, and ignore and redirect as much as possible.  And when all else fails, avoid.  Quite different from ignoring – avoiding is trying to not get there in first place.  Not the best approach, I suspect, but when OCD creeps into Autism aversions creeps into we-just-need-to-get-through-the-day, well, avoiding isn’t half bad. 

Some of those aversions that Coleman cannot get past, that truly bother him at a level difficult to verbalize (rather than just seriously dislike) are:

·         He has aversions to sweatshirts and sweaters of any kind.  Its takes several weeks each fall to get him to accept a tee-shirt under his long sleeve shirt.  Sweatshirts and sweaters are nearly impossible.  And so, when we went skiing this winter, I sewed a layer of fleece into the front of his long sleeve shirt.  He didn’t love it, kept trying to see what was bulky under there, but he tolerated it. 

·         He also strongly dislikes anything on his head.  Any kind of hat, a comb or a brush, a helmet.  All of it.  We have exactly one hat that he has worn for two years not and it’s the only one he will put on.  Reluctantly.   They managed to get a helmet on him for skiing, and it might have been what bothered him most.  His first question when he came in from skiing, “Helmet off?”

·         Coleman really, really hates haircuts.  I know many kids on the Spectrum share this feeling, so I do not mean to make light of it.  We literally have to hold Coleman down and wrap his arms and legs, so that he doesn’t hurt the person trying to cut his hair (my poor sister-in-law).  We try to coach him ahead of time, talk him through it, but we have never had success.  So we let Coleman’s hair grow longer and longer until, well, as Billy said this morning “He’s beginning to look like the Bay City Rollers”.   Time to stop avoiding and buzz his head.  If we do it now, it will last us until back to school in September.  Really. 

·         Coleman does not like anything on his hands.  This is one of the trademarks of Autism – sensitivity to textures.  For Coleman it is pretty much all textures, including dirt, water, food, sand, and mittens.  If he gets something on his hands, he quickly becomes fixated on getting whatever it is off.  Sometimes it’s possible to redirect him, but only if what’s on his hand is something he can’t feel.  For example, if he gets some magic marker on his fingers, he is initially fixated on it, trying to get it off.  But I can quickly ask him to draw another picture, or ask him to help me with a puzzle, and chances are he will forget it.  But if it’s a texture on his hand, like something sticky or sand, then I have zero chance at redirection.  If he drops his guys in the sand at the beach, he will not reach into the sand to get them, instead asking me to pick them up.  We went through a lot of physical therapy aimed at desensitizing his hands and fingers.  The therapy had you place objects he loved (his guys) in a big bin of rice and he had to reach in to get them.  It was like placing his hand in a vat of boiling hot water.  Even for his guys that he loves, he wouldn’t reach his hand in to get them out.  And it’s the same for gloves or mittens – absolutely can’t get them on him.  He’d rather lose a finger to frostbite than wear them.  Over the years, he’s become a little less sensitive to touch, and we work around what is there.  I think it’s safe to say his future will never include a pottery wheel. 

·         Another common trait in children on the spectrum is picking at things.  Coleman very much is a picker.  If he gets a tiny piece of his skin scratched, or if his skin gets very dry, he will pick at it until it literally bleeds.  Last year, after a head cold, Coleman’s lips became seriously chapped.  But worse, he picked at them, pulling at every tiny piece of dry skin, until his entire mouth looked like one giant cut.  If he smiled, it bled. Now we try to be proactive if he gets a cold and get Vaseline on his lips while he sleeps.  Similarly, a couple of years ago what started as a hangnail quickly turned into a major skin infection because Coleman kept pulling and picking at every tiny piece of skin until his entire thumb was raw and infected.  So, now we try to put cream on his hands – which he also detests – and we warn him that if he picks, we will get the cream. 

And then there are just some things that bother Coleman, but that we try to work around, or work past.  These things do not have the same level of intensity for Coleman.   But they are still no fun for him: 

·         Coleman does not like to get new sneakers.  Which is why we run those that he does get into the ground.  Look for the forlorn looking child with the worn-out sneakers and you will see Coleman. 

·         He is not a fan of sleepovers, as previously discussed.  Not here or anywhere. 

·         Coleman does not like anyone other than himself to touch his guys.  If he lines them up and you accidently knock one over, walk away calmly.  Do not try to pick the guy up and put him back in line.  You cannot possibly get it as precisely perfect as he can.  And you will make him crazy trying.    

·         While he is a huge fan of music and dancing, he is not a fan if we try to sing or dance along with his shows.  I’ll sing along with one of his Backyardigans shows and he’ll put the show on pause, look at me with disgust, and say “No, stop.”  I happen to have a nice voice, in case you are wondering. 

·         Coleman, we discovered, is not a fan of boats or tubing.  This past summer, we thought, he would love it if he would just try it.  He loves things that go fast, loves the water, so naturally, he will love tubing out on the boat.   We asked him if he wanted to try it.  “No thank you.”  “Are you sure?” “No thank you.”  But we thought if he would just get on it, he would like it.  Sometimes you have to push, let him experience it before letting him make the call.  So when Kathleen (who we were visiting) said “I’m willing to try if you are”, I knew she was all in for what could be ugly.  And it was.  I’ll save the painful details, but that Billy came off the tube without any bleeding body parts was something just short of miraculous.  And so now we know, Coleman doesn’t like tubing. 

·         Coleman does not like to go to bed if we have company.  What can we say, he likes a good party.  So we try to trick him.  We open the garage door when he is not looking.  We then make a big show out of escorting our guests to the front door, and wave and say goodbye as they leave.  I then quickly take Coleman upstairs, and Billy opens the door to the garage in the kitchen and lets our guests back in. If you’ve been here and done this for us, thank you.  Our life is a sitcom.

I say much of the above lightly, but I by no means intend to make fun of Coleman or any other child on the Spectrum that faces similar issues.  These aversions and issues that Coleman has are as real to him as an aversion to heights is to me, or an aversion to crowds is to an agoraphobic.  I wanted to share some of the antecedents to his behaviors, point out some of the primary causes for his meltdowns.  And note that we hold some of the responsibility for Coleman’s behavior.  It’s our responsibility to control and limit these things as much as we can.  By doing that, we lessen Coleman’s anxiety and his meltdowns.  And that makes us all happier.  Especially Coleman.