Friday, August 17, 2012

I wish my gut could talk...

People tell you all the time to listen to your gut.

While I like this as a concept, when life shoves you onto the coalface of something, I find it's a little bit problematic.

This week, as we have for the last 8 weeks, we went to Billy's lovely psychologist for his CBT session. She is a brilliant young woman, who relates to Billy in an incredibly intuitive fashion. She is, in many ways, streets ahead of a lot of folk he has dealt with in his life.

My gut says very good things about her.

The CBT program is also incredibly useful. In the beginning phase, learning to understand anxiety and how it manifests, learning about the tools he has at his disposal to deal with anxiety... all good. He has really responded to this information and its processes.

My gut had only a few minor objections about this.

We have now moved onto dealing with Billy's specific anxieties, and my gut is protesting. Loudly. Spectacularly.

The specifics are almost unnecessary (though I'll touch on some in a second), it's the broad picture of the program that concerns me.

Am I (is my gut) disconcerted because it is uncomfortable to see my child struggling and I want it to stop?
It could be, for sure. Watching your child struggle is not fun and it's definitely counter intuitive to all the nappy ad/kids messily baking versions of motherhood we get sold on TV.
On the other hand, I have spent a disproportionate amount of my mothering time watching my child struggle, well aware that the conflict I feel is NOTHING compared to what he has been forced to experience in the name of 'education', 'socialisation' and the big kahuna 'responsible medical care'.
So... the idea of my soft heart driving the churning in my gut just doesn't cut it for me. Not fully.

Is my gut protesting loudly (for all to hear) because I have no real idea of what is right or wrong therapy wise?
It could be, definitely. I have recently chosen to spend an hour a week working with a wonderful counsellor on my own psychological journey, and it's only the second time in 44 years, I've done such a thing. So, I am no expert in this game, in fact, I'm a true novice.
On the other hand, in our autism journey so far, we have researched and observed many behavioural programs. We have consciously chosen to not enroll Billy in these programs before because we have not seen them as a good match with his temperament and needs. Moreover, the practices within these programs, effective as they can be, do not appeal to our sense of... what is it..? Justice? Humanity?


Is my gut protesting loudly because we're doing something that's not right for Billy?
I have no idea.

Autism or no autism, I have never been comfortable with telling kids what to think. I'm not a big fan of telling children their behaviour is 'wrong'. I have never, ever thought it made sense that adults should be automatically right in the eyes of a child. Actually, that last one is a no brainer.

So, sitting in therapeutic situations where a child is given an arbitrary number of times he can say something, and then no more... feels kind of wrong. I get that asking the same question over and over is annoying (dear god, how I get it). But... is it my place to insist it stops? Is placing a random limit on repeated questions the right way to go about it? It gets the job done for sure, but is it fair?

It seems like the adults are saying the child's behaviour is wrong.

Billy's behaviour doesn't seem wrong to me. Different to mine? Sure.  Inconvenient? Occasionally. Challenging? Maybe. Counterproductive? To the therapy aim, sure. But it's him. It's genuine. That can't be wrong.

Approaching the need for change with just saying... your choice is wrong (or even worse, not saying it, just working on that premise without explanation)... it rankles with me.  I can see that presenting him with a broader range of options to choose from could help, but assuming his behaviour is intrinsically dysfunctional and lacking in logic... no.

The other thing that concerns me is the idea that external reassurance is an undesirable.

Billy has learned many strategies in is life, to his credit. He definitely carries some anxiety around with him, but, he has never ever been crippled by it. We chose to take this CBT on, because Billy's GP suggested (and his neurologist agreed) that his reaction to sound was partly anxiety related and needed to be worked on. Even though we feel strongly there's a solid biological basis to his issues with specific sounds (and his ENT agrees), we are under a certain amount of obligation to follow the suggestions of Billy's team. So, we did.

One of Billy's coping strategies is to seek reassurance from one or both of us.  His parents. Most autism parents joke about being the 'spare brain', the back up plan in their kids' lives. It makes a lot of sense to me, and it's a role we have taken very seriously up until now. In a world that confuses him on a good day, and assaults him on a questionable one, he needs a safe zone, I would have thought.

So, to be told that we should not reassure him, but instead to place limits on his need for reassurance, is about as counter intuitive as it comes.

The idea, which I understand intellectually, is that if we take away reassurance from us, he will be forced to form his own strategies to cope. This would make perfect sense, if he wasn't Billy and he wasn't autistic. The world can scramble this kid with something that the rest of us don't even notice is there.

Just as leaving him in a room full of toys as a toddler wasn't going to teach him how to play, removing one of his emotional fall back zones, feels a lot like it's doomed to fail. And probably hurt on the way down.

If I'm thinking all of this, I can only imagine what Billy is taking away from it - consciously and subconsciously.

And here's where my mind really starts spinning. Spinning me back to a point we've hit a thousand times before.

At what point, is an autistic child allowed to follow his own impulses? When do we say, 'this is like forcing a paraplegic child to stand up and run because everyone else can'? Who says 'normal', or close to it, is the aim?

All this therapy, surely, should be aiming at happy, at functioning at his best, at secure in his own skin.

Why does this behavioural therapy feel so... not like that? Why does so much of what the world expects of Billy, feel like we are forcing him to be someone he's not.

I'm all for learning new things. Presenting options in a way that he can understand seems like a great aim.

But if we've learned nothing else in the last eight years it's that telling him to be 'normal' is as insane and offensive as insisting he change his gender or his skin colour. Even worse, is assuming that mimicking 'normal' is success. Even worse again, is assuming neurotypical approaches are comprehensible or appropriate to him right now.

I can't be sure, but I think my reservations are less about being pro-autistic, and more about being pro-Billy. As I've said before, the idea of being anti-autistic is incomprehensible to me. As incomprehensible as saying to any child, your behaviour is wrong.

I'm not even sure that's what's actually happening in CBT. It might just be what I'm hearing. Maybe it's bringing up old auditory halucinations of nuns with giant canes and notions that I should be more Madonna like (well before that Madonna).

It's funny, but with the whole diet/supplements journey, I get it now (lord knows, it took me long enough). He's not always thrilled about the changes or the insistence he swallow one more spoonful of something, and that conflicts me slightly, but...

I see that health is the aim. Not to be 'like other people' but to be the best you can be. It's catered to his body, not some cookie cutter idea of good functioning. I see too, how the transformation in Billy's health has grown from the inside out. He feels it, and it allows him to change where change is possible. It doesn't measure him against others, it allows him to be himself, with substantially less physical discomfort. If he doesn't feel improvement, we reassess.

So what's the difference between focusing on improving health and improving behaviour?

I have no idea, really.

One feels more authentic. One feels more confronting. One seems kind of cruel. One feels kind of confusing.

Which one is which? I have no freaking idea, really.

What does my gut say?

Well, since it's gone gluten free along with Billy, and it feels infinitesimally better, it says 'Don't give me gluten'.

Beyond that it says, 'You are driving this bus, lady... suck it up.'

Helpful, really.


Madmother said...

With all the years of therapy including CBT we have done with Boy 1, NEVER was it suggested we limit the reassurance, or truly change who my son is.

If they had I would have bid my farewell to them then and there.

Am just a little floored at reading that yours has.

Lisa said...

I'm with her-above (waves at MM).
What you're describing doesn't fit with what I know of CBT (but then, I don't know that much!).
Still, it's the the word 'cognitive' that makes it CBT. I thought that, unlike other therapies, the basis of CBT was the cognitive choice to change something. Therapists can help with the tools.
As in - currently you choose to relieve anxiety by talking to your parents... what would be an alternate strategy, say if Mum was at the shops and not there? How about trying it? Not now? OK, well have a think about it for later. (Years later maybe, but doesn't hurt to have a think about the fact that there are other options).

Shiiit, if you don't understand what you're aiming for, you're being trained like a dog. Which is a problem I have with some early intervention 'therapies'.

Michele said...

have you shared these concerns and doubts and questions with the therapist doing the CBT?

Anonymous said...

Have you googled the article originally from the New York Times "An Immune Disorder at the Root of Autism"
by Moisis Velasquez-Manoff, publ
August 25,2012. I read the article in the Women's Weekly, but the NY Times article
has a whole new slant of a plausible cause other than vaccines. Draws a parallel with the increase in asthma, and other diseases, in the modern era. Hope you find it helpful