Susan's Blog

Sunday, February 27, 2011

Our Neurotypical Biases

I love feeling like this, on top of my game, enjoying everything I have to do today.  Delighting in my coffee, my cheese, eggs, my workout.  Working on my new novel.

But I’m at the mercy of moods, and generally not circumstances.  There is not much reason why today feels so much better than yesterday — there’s even snow falling today.  I hate the fact that there is this unseen force within me that controls so much of how my day feels.

Mood issues run in my family.  What about Nat.  ?  How would I know?  I suspect that any of Nat’s neurological/emotional fragility comes from me, although many would point to Ned as the origin, because he is such a geek.  Someone just asked me the other day if more Jews have autism than other groups — huh?  I barely knew what to do with that one, any more than when someone tells me that autistic people are more beautiful than everyone else.

For a lot of Nat’s life, I suspected that he could benefit from therapy.  I mean traditional psychotherapy, once a week, connect-and-cry with a paid professional kind of therapy.  But anytime I’ve gone looking for such a person, the Behavioral Bias crops up.  As soon as the professional finds out that Nat is autistic, they want to do behavioral therapy on him.  They want to analyze his behavior. Only once did I find a psychotherapist who treated autistic guys like Nat, but he was put off by my honest admission that Nat sometimes, well, you know, sometimes he would become so upset that he could become aggressive.  Hmmm, said this well-thought-of professional.  Have you ever considered behavioral therapy for him?

But it’s the aggression and anger that made me want to get him psychotherapy!!!  Maybe he just needed to connect with someone who would help show him that he was okay, and that if he wanted to change, he could.

Blah.  Of course Nat has had behavioral therapy.  That’s been his primary mode of learning.  That, and one-to-one connection and persistence.  But I wanted him to have the other kind of therapy, talk therapy which has helped me and so many others so much.  Even though he does not talk much.  Surely that can’t be the issue:  don’t non-verbal people get psychotherapy sometimes?  If they don’t, why not?

Why can’t psychotherapy be considered for someone who is autistic and can’t really speak?  If one is human, and has outbursts or mood swings, then shouldn’t they be offered the same kind of treatment as anyone else, autistic or not?  It’s just like what happens with the autistic folks who have GI issues; so few people thought to check into tummy aches, etc.  Again, the first rule was always to treat anger, outbursts, etc., as behavior issues.

The assumptions we start with make all the difference.  You might be starting with the assumption that a person is autistic and that means 1) he doesn’t experience emotion the way we do; 2) he doesn’t care about others’ states of minds so he can lash out if he wants to; 3) he is working with an inferior/disordered neurology and so he needs us to wrench him into proper shape.  He needs a black-and-white way of dealing with things because he simply does not see gray areas.  Therefore, you must use behavior modification.

But if your assumptions are 1) He doesn’t appear to react the way we do; and 2) that might be because he does not understand enough about human interaction because of his language issues; and that 3) he feels the same things everyone else does, and probably wants the same things, then you might realize that there damned well should be a way that he could have psychotherapy for his outbursts/mood swings.

Basically, if you start from the standpoint that he is just a person, and as mysterious as any other person, with the added difficulty of language barriers, then your mission — to help support him, help him understand you and himself, and then, to connect with him — that task has just become a whole lot easier.

The problem may be as much with the biases of the professionals as with the autistic person himself.


I must say that just about w/o exception, all of the kids with autism whom I personally know (including my own son) have fathers who excel in quantitative skills.

— added by Cathy from CT on Sunday, February 27, 2011 at 12:33 pm

OK… now I’m going to admit to something that will probably offend…. I have to admit, I don’t have a lot of patience for those with teenagers/adults with severe aggressive behaviour – sorry…. but it’s true… and the #1 reason I will never allow my 9yr old near aggressive children/adults.

I feel if you can teach a 2 to 4 yr old to behave you can teach an autistic child to as well.. I guess it’s b/c having been there, done that, survived it and now have a mouthy “normal” 11yr old instead of a head slamming, hole in wall making, punch a glass window breaking, throw whatever is handy 6yr old… I’ve lost the ability to sympathise. See I was terrified I was going to end up with that teenager that harmed me and refused to end up like that. We ended up using Risperdal, I discovered that time out didn’t work due to claustrophobia and I dealt with the meltdowns when the tv went off and his favourite toys got taken away etc. But he learned. It wasn’t pleasant, it took a couple of years, but he learned. Oh, he’s no angel… he has his moments… like the 2mths surrounding Xmas until I finally took his TV remote away for 3 VERY long days. He’s addicted to the thing.

I have found the #1 “cure” to be the ability to communicate and to learn that “no” means “no”.

His younger non-verbal bro doesn’t have the aggression but that doesn’t mean he doesn’t have his moments. I have worked and worked hard at teaching him communication. Yes, he may not speak easily at all but he does understand. He sat there this morning with his game screaming in the hallway out of direct sight and I remained at the table and informed him that if he wished help he had to come to me and ask nicely. If he gets to me and still has trouble using his words – too upset – he’s prompted non-verbally with the sign for help. Screaming is for babies…. not 9yr olds. I also refuse to “jump” when he asks for something. If I am busy I complete the task I am working on. I tell him what I am doing “first”, “then” I will do whatever it is. He likes to cry then and he gets reminded that he isn’t allowed to scream and he doesn’t get until it stops.

I don’t view this a “behaviour therapy”. This is “parenting”. The only autistic behaviour I try to stop is the handwringing b/c it’s twisting the fingers on his left hand. Flapping, spinning, toe bouncing, vocal noise will get “Stop, you are too loud” if he has trouble shutting it down or other stimming will get the same again (“Sit nicely, please”) if he’s having trouble shutting it down on his own… as long as he’s happy… they are fine with us.

— added by farmwifetwo on Sunday, February 27, 2011 at 12:33 pm

Interesting and insightful as always. Maybe as Nat becomes more and more able to communicate in ways that can actually let you know what he’s thinking or feeling more, he may be able to benefit from some type of traditional therapy. True behavioral therapy looks at all behavior as communication, and good ABA looks at a person as a person, not just behaviors that need to be extinguished. At least 2 behaviors should be taught for every one, like aggression, that needs to be extinguished.
Communication is key and teaching and helping a person learn effective, nuanced communication should be life long. With all of the other wonderful things you do for Nat’s future, ensuring skilled communication and language therapy should (and probably already are) be at the top of the list.
I find it frustrating that in a day (at work) I don’t often have enough time to just sit and observe all aspects of our individuals as they go through their day. When a spare minute comes up, I like to just sit back and watch and learn. I can’t tell you how many times I have seen well meaning staff giving constant yes/no choices to people who may be able to say or signal yes or no, but don’t truly understand what it means. This conversation is endless, but putting your ideas and insights out there is a help to so many.

— added by michele on Sunday, February 27, 2011 at 1:04 pm

As always this is something to make me sit back and think about my approach to the kids/young adults I work with (some on the autism spectrum and some with other developmental issues). I admit that I do approach a lot of my work with a very behavioral bias, but I think it’s with the perspective that Michele brought above. Behavior is an intensely personal and effective form of communication, often more powerful than words. I think about the times that my words don’t match what I’m actually saying verbally (e.g., “I’m fine” after being quietly angry at my husband). The people who are closest “get” that communication and will communicate back with equally powerful nonverbal means (e.g. a deep hug, a kiss to the top of the head).

The trick is to make sure that these exchanges work for all of the parties involved. This, in an ideal world, is where a really skilled behaviorist comes in. They do not invalidate what is trying to be communicated with the behavior. Instead, they strive to make the means of the communication more effective for all. Instead of acting in a way that scares others, learning to ask in a different way for what you need, etc. You’r mother’s intuition ofabout the value of hugs, rooting out the emotions under it all and deeply caring for our family members is part of the same arsenal of therapy.

Thanks again for another piece to turn over in my head in the days to come.

— added by bec on Monday, February 28, 2011 at 11:06 am

When I was teaching autistic teen I heard it said on several occasions that autism is more common among Jews, particularly Ashkenazim, but I never found any studies confirming it. Who knows where that one comes from?
I don’t think Nat, whom you say loves to be up and doing things, would benefit from traditional psychotherapy where the patient is expected to talk about whatever is on his or her mind while the therapist sits and silently listens. Just the thought of someone listening to me ramble on without saying anything in response except for an occasional “hum” or “I see” is enough to bring on an anxiety attack.
Maybe Nat would benefit from being with a quiet supportive young guy who would just hang out with him without any pressure.

— added by Sunni on Tuesday, March 1, 2011 at 9:42 am

Is this helpful?

— added by Sia on Tuesday, June 23, 2015 at 5:46 am