My Autism Insights

 Yahoo News is carrying a story today about Oliver Sacks, who will be appearing at the Harlem Abyssinian Church during the World Science Festival.  Sacks has a new book out called Musicophilia: Music and the Brain, and in it he explores how people with certain neurological disorders like Alzheimer’s and autism positively respond to music.

This is particularly interesting to me because I know at times, Gus has done well with music as a sensory aid.  Even this past week, his teacher used music to calm him when he was getting upset about people talking in the room.  Whenever he’s having a bad episode of crying and confusion, soft classical music can soothe him enough to make it to bedtime.  And other times, he just enjoys it so darned much!  I might approach his teacher about trying to use it more in the classroom.

I think I may also have to check out the book and perhaps review it here.   What are your thoughts about the prospect of using music as a healing method?

My son has been increasingly down on himself.  Whenever he is corrected for something or questioned about his behavior he’s been responding with comments like, “I’m a loser,” or “I stink.”  The phrases are things he adopts from TV or sometimes even from my own negative self talk (which I wasn’t even aware he was picking up on).  For example, we have a video game - Mario Kart - that we all love to play together.  I’m terrible at video games, and one day we were playing teams of two (poor Gus got stuck with me) and I laughingly said, “I stink at this.”  So, I admit, that one was my fault.

I just wonder why the feeling behind the words has become so prominent these days.  His teachers tell me he doesn’t exhibit any self-esteem problems at school (duh - except for the fact that he cries when he can’t finish his work on time or when he breaks a rule), but it’s clear to me that this isn’t accurate.

He’s been in a special needs class in a mainstream school all year, and I think the pressure has really gotten to him.  It may be better for him in terms of academics - his academic grades are phenomenal - but in terms of behavior and socialization, they seem overly focused on his ability to focus and on medicating him so he can focus and blah blah blah.  Medication will not magically make him un-autistic, even if he can focus with it (which I’m not convinced of)!  He’ll still be anxious and he’ll still have meltdowns and he’ll still have difficulties that will require support.  I’m not saying his staff in inept or that they’re singling him out, I just wonder if I screwed up.  Maybe I should have just left him where he was happy.  Maybe I should request to have him transferred back to his old school. 

I don’t know what’s right anymore, but I just want my son to feel good about himself.  He’s a great kid.  He’s funny and incredibly smart and kind-hearted and affectionate and a whole host of other wonderful things.  I tell him this as much as I can.  But he’s not with me the majority of the time - he’s at school.  Maybe the right thing would just be to keep him with me for a year or two.

 The story of Alex Barton, the five-year-old boy with (presumed) Asperger’s Syndrome who was humiliated by his teacher and classmates when she had the students vote on whether he should remain in class, has circulated all across the blogosphere for days now.  I blogged about it myself.  A family member approached me today about the situation and made a statement that, “the kids were just being kids…kids are like that.”  He sounded like it was no big deal and did not hold the teacher accountable at all, at least not to me, perhaps because I refused to continue the discussion after the kids crack.

I’m not in favor of lynching Ms. Portillo, the teacher; she’ll get whatever is coming to her.  But I had to comment on the other children in the class.  I don’t believe that kids are just naturally so mean spirited.  Yes, when there is a mob, they can get mean and quite out of control, but I believe that kind of behavior is learned.  Ms. Portillo’s behavior is one example of how adults can teach cruelty.

There were two children out of the sixteen who did not vote against Alex.  They are further proof that it wasn’t just a case of kids being kids.  Obviously those kids were taught better.  They obviously knew how to be kind.  Someone should pat their parents on the back, and definitely take those two out for ice cream cones.

Yesterday I read about the ongoing case of Nate Tseglin at Kristina Chew’s blog (Autismvox).  Nate is a seventeen-year-old boy with Aspergers Syndrome who was forcibly removed from his home essentially because his parents would not treat him with drugs the way his school and the state deemed appropriate.  He ended up in a mental institution, under restraint and being pumped full of psychotropic medications that had been proven by the family to have adverse effects.  He’s going home today as the Autism Self-Advocacy Network reported, but the story goes back to at least February.  That’s a lot of months of suffering for a kid who did nothing more than be born with different wiring.

This story reminded me of another a few years back that occurred in Tuckahoe, NY.  A woman I knew had a daughter attending the same private school as my son.  Over the course of time, I learned that the school district had petitioned to have her daughter taken from her and placed in a mental institution.  Last I had heard she had lost custody of her daughter and was fighting to have the little girl returned.  But she was a single parent, and did not have a lot of funding behind her.  The father - a deadbeat - offered no support to help his daughter.  Presumably more convenient to have her locked away.

It’s cases like these that scare me enough to at least give the impression that I’m going along with the system.  What gives these people the right to take your child for refusing to medicate and educate and raise your children the way they demand?  It’s criminal and discriminatory the way these disabled children and many others like them have been treated. 

Every now and again I feel as if I’m getting a glimpse into some of Gus’s challenges.  Today it seems that I am experiencing some trouble with motor skills.

I somehow managed to either tear or pinch something in my right shoulder which has left me virtually unable to use my right arm or hand without lots of pain.  So I am left having to perform most tasks with my left hand.  Fortunately for me I’m a little ambidextrous, but it’s still taking a lot of brain power.

I had to write Gus’s teacher a weekend update note.  Something that usually takes two minutes took closer to ten minutes.  My brain was telling my hand how to form the letters, but the messages were sluggish and a little baffling.  Trying to brush my daughter’s hair, the messages were even worse.  I was wondering when my hand was going to turn the brush around and smack me in the face with it, like in some horror flick.  My morning has been incredibly frustrating.

Difficulty with fine motor control is not uncommon in autistics.  Having to spend a couple of hours (and probably the rest of the day at minimum) using my off hand and fumbling through my frustration, I have a renewed sense of sympathy for Gus.  I’m tempted to tell his teacher to cut the kid some slack during those torturous morning writing assignments, but then it would take me another half hour to write the note and I’d be late for work.

Gus finally lost the front tooth that had been hanging on for weeks, but he was very concerned that the tooth fairy’s dust would make too much noise and disturb his sleep.  So there was a long discussion of where the tooth would be placed in order to get his ‘reward.’  We finally agreed to put it under my pillow (how convenient for me!).

His worry did not surprise me in the least as he tends to hear things that many people can’tdue to his Sensory Integration Dysfunction.  While SID is often present alongside symptoms of autism, it can appear on its own or with other neurological disorders like Cerebral Palsy or ADHD.  It means that the senses: sight, hearing, taste, touch, smell, sense of movement or sense of body position in space can be either over-reactive or under-reactive.

To illustrate, here are a few sensory difficulties that Gus and I share:

• sensitivity to noise (ironically, he can be quite loud)
• sensitivity to cold
• aversion to wetness (i.e. someone touching us with wet hands, spills)

And on his own, some of Gus’s traits include, movement seeking and deep pressure seeking.

So we kept the tooth dairy and her noisy dust far away from him last night.  And we both got to sleep like babies.

He doesn’t mean to do it.  He feels badly when he does.  It seems that, more often than not, whatever Gus touches gets broken.  We don’t want to get angry because we know it’s always an accident, but it gets hard when the items start to become pricey or when they are treasured.  Last year it was the vertical blinds and then the replacement curtain rod that was ripped right out of the wall.  The curtain rod in his room was bent to an unrecognizable shape; his sister’s beloved easel was snapped in half.  There have been numerous other things, which would be pointless to mention.

We try not to get angry because we know he doesn’t mean it.  His impulse control is almost zero.  Even the medication, short lived as it was, helped his focus, but the impulsivity was still there. 

Today’s victim was his and his sister’s favorite Gamecube game.  He, for some reason, thought it was a good idea to stand on top of the system.  He knew he shouldn’t do it, but he couldn’t stop himself.  The game is destroyed and his sister is furious.  It’s not easy to explain to a five year old that her brother didn’t mean it.  She doesn’t understand anything except that she can’t play her favorite game with Daddy.  She’ll be angry with her brother for a while, but ultimately, she adores him and all will be forgiven. 

Siblings of autistic children sometimes have it harder than the parents. 

We tried my son, Gus, on medication for the first time - Strattera - to try to calm some of his impulsivity and lack of focus. In addition to his Aspergers symptoms, he’s also borderline for ADHD. His school counselor recommended it, so after a couple of visits to his doctor, we gave it a go.

Terrible. I won’t go so far as to call the trial a complete disaster, but after five days, we had to stop. The first couple of days were promising - he seemed more on topic when he conversed with us (instead of talking like a Pokemon) and was calmer. His performance in school was pretty typical of a good week without the meds - minor problems, but mostly on point. On day five, the school bus monitor had fear in her eyes when she told me how he wouldn’t stay in his seat during the forty-five minute ride home. She had never had a problem with him staying seated, and she’s been with him since September. That afternoon was one of the worst I’ve ever had with him in terms of hyperactivity. Instead of running back and forth crashing into the doors, he was kicking and punching the doors. He had a wild, completely disconnected expression that was accentuated by the growling sneer. My boy is almost always smiling. We took him off the Strattera right away.

The next day he had a minor episode on the bus during the last few minutes of the ride and was calm in the afternoon. Clearly, this was not the drug for us, but I have heard of very different results from other people.

We may try him on Focalin after the holiday weekend, but I’m not overly optimistic.

A couple of friends from my private blog community asked me some questions about autism that I thought I’d answer here:

L. asked how I de-stress from the really stressful days with Gus.

The stress is not as bad as it was when he first got diagnosed at 2 1/2. But the period between 18 months and 2 1/2 were really crazy - I was pregnant, and he was at his most out of control. Honestly, I didn’t have a lot of stress relief. I was teaching yoga by then, so that was probably the biggest comfort, but even that was hard because I was exhausted all the time, running from job to job with a toddler in tow. My friends and family don’t often understand Gus’s quirks, and the few who do sometimes have vastly different opinions about how I should handle certain situations. Talking to them often adds to my stress.

Right now the hardest things to cope with (concerning his autism) are the hyperactivity (it’s exhausting), the impulsivity (it’s worrisome and can get him in big trouble) and the constant stream of complaints from school. I take St. John’s Wort to keep calm, and I’m still teaching yoga, which helps a great deal. But the support of my online community of friends is the most grounding thing I rely on.

H. asked if there is a cure for autism.

There’s a lot of buzz these days about biomedical interventions for autism, which I’ve blogged about a bit about. Some ‘experts’ are saying that by following specific treatment protocols: diet and detox mostly, they’ve been able to reverse autism. But this presupposes that autism is caused by external factors - toxins in the body, reactions to foods, etc. No one has conclusively determined the cause of the disorder. So you can see the faultiness of the theory. What they don’t say - these people who are claiming to cure autism with diet and detox - is that these are part of a larger treatment plan that usually involves intensive educational therapy and sometimes medication. Even with these treatments, an autistic person may develop coping skills and may learn to control some of the behaviors that set them apart, but they are still autistic. There’s no CURE (and a better question might be is a cure needed or should society just learn to accept that everyone is different?) just sort of management strategies.

Raising children is hard when family members have a differing perspective about how you should raise your children.  This becomes triply hard with an autistic child.  When the family doesn’t ‘get it,’ it is a very sad thing.

My son was having a hard time this weekend, too much excitement going on around his sister’s dance recital.  He enjoyed the show, but it also riled him up, far beyond the boundaries of his very tenuous self-control.  He did his usual race through the house, became very inattentive and wild, and kept playing with a family member’s umbrella, which was not appreciated by said family member.

This led to a conversation about autism, impulse control and  discipline.  I tried to explain that traits like impulsivity, flailing when restrained, holding ears, zoning out, screaming…these reactions to internal or external triggers are not necessarily within the control of the autistic child. 

“He needs to learn not to…”

And it would be great if he learned not to run up to the stage during a performance or to continually touch someone’s property when they said not to.  It would certainly ease my mind if I no longer had to worry about him running off or getting into some kind of trouble.  But the reality is that right now, he can’t control those impulses.  It’s not a discipline issue, it’s a neurological disconnect. 

It makes me sad to see this lack of understanding and lack of acceptance right in my own family.