5 Jun 2009

Just as he is

Having spent so much time with Duncan this week has given me time and space to think about him and autism and expectations. He was a very restful companion in many ways. There wasn't a need to chat incessantly. He did talk a lot, but not all the time. Often I missed what he was saying as he spoke too quietly in the noisy surroundings and he didn't want to repeat himself. His observations were probably not aimed at me anyway, he was likely just musing to himself. When we relaxed in our room, he pottered about, playing with his toys or splashing and telling himself complicated tales in the bath or he snuggled beside me and watched the TV. But it was very quiet and peaceful.

In the parks, he sat in his buggy with his long legs folded up and his stuffed Donald Duck clasped in his arms. He had his cap pulled low over his face and on the second day, despite the heat, wanted to wear his green hooded top. He wore his ear defenders about 1/3 of the time.

I thought about others who might think I should be encouraging him to walk rather than sit in the buggy, engage in conversation instead of companionable silence. I dismissed these ideas as impracticable, unnecessary, intrusive and unfair. I was frequently overcome with happiness at sharing this time with my son. He was experiencing such joy and he was such a content little soul, that I was brought to tears a few times just out of love for the perfection personified that he is.

I know that I have been described as lazy, a lunatic even, and as having "given up" on Duncan, or for thinking I have "missed my chance" to apply some sort of early intervention that would supposedly have minimised his autistic difficulties. That is why, it has been said of myself and others like me, we speak out against the quack "cures" foisted on some autistic children and the false blaming of vaccines and toxins for having caused their condition.

But that's nonsense. Duncan is who he is. He is autistic and there is nothing I can do to change that. I can parent him and teach him, I can help him like his siblings to learn more as he gets older, to develop more knowledge and skills, to change from a helpless infant into a man as competent, self-reliant, decent and as capable of continued learning as he can be. There was no missed narrow window of opportunity. He will learn best when he is comfortable and feels safe and appreciated. I do not have to make him suffer by cutting off the place of safety his buggy has been.

I thought about the autism therapies marketed, the Floortime, RDI, ABA and Son Rise. I thought about what I have read about each of these. I have not followed any of these autism therapy programmes. Well, I did use PECs with Duncan, but only for a short time and not exactly as instructed in the manual. The cards were very useful for a time though.

But for the others, I bought or borrowed books about them and though in a few of these books, I picked up a couple of useful ideas to try, none of them appealed to me as something to do wholesale with Duncan. None of them have any good evidence of their effectiveness beyond parent testimonials. Though ABA is less bad than the rest, it's main claims are still based on a badly run study over 30 years old the results of which have not since been replicated.

I know many people have found some of these ideas have helped them and their children. That's good. But I dislike the marketing of each of these therapies. I do not think that it is necessary to follow the trademarked and expensive therapy of some guru to be able to teach an autistic child. As Duncan enjoyed the parks in his own way, I though about what I read in the RDI book for example, that you're supposed to make every moment a time for developing those relationships, for making the child interact with you enough to overcome those pesky autistic deficits and change their neurology. The thought of pushing myself into Duncan's inner world at every opportunity and distracting him from all his own thoughts and observations with my own desire to make him talk and ENGAGAE is abhorrent to me.

I thought about how much of these therapies are based on the idea that autism is so terrible, that autistic people are lesser people. I don't agree with that. I witnessed my son enjoy perfect happiness. He was doing what he wanted to do, we negotiated so that my needs were also met. We both had fun. I may be making a circular argument here for which I apologise. But it comes down to my acceptance of him and his autistic way of being. It might be harder in some ways to deal with the aspects of life that present fewer difficulties to the parents of non-autistic 8/9 year olds, but that's how it is and in some ways, I have to admit, it is actually easier. But then, no-one chooses to become a parent because it's easy.


Lisamaree said...

Sharon, I so agree with how nice it is to spend time with our kids and not hold up to anyone elses expectations of how they should behave. I am even luckier in that i have no typical kids to compare to or have to make allowances for.

As you well know I believe in ABA as a science which informs every thing we do. Our kids are still SUPER autistic, but thanks to being able to tailor what they need to learn to their strengths and interests, to pair what is difficult with what is enjoyable, to understand that all effects are the result of a cause or consequence: that has given me the chance to really know 2 people that would have been described as "unreachable" by less informed professionals.
Being in an environment where everybody believes that their potential is unlimited, or limited only by their ability to teach, not by my kids ability to learn, is also really positive for us as a family. My child is never a problem, it is the environment, the cause and the consequences that are the problem - and we all just have to figure out a way to fix that! And they are always reaching and teaching themselves that there are better ways.
And that means less stress and more opportunities for my kids to be themselves. As Autistic as the day is long
I'm looking forward to learning more about how I can expand my kid's horizons by applying ABA to further education and life skills opportunities at the coming conference in Belfast. I was hoping you might be there Sharon? but maybe not.

Lovaas had some great ideas, but the people who work with real kids in real schools with qualified supervision have learned a lot of new stuff since then. It aint all about precision teaching and graphs anymore. Boo is behind me making a toasted sandwich that he was taught to do, a long way from the table top in school (life skills kitchen) But I have the daily data that shows how he was taught it, how quickly he picked up each step and when they thought he had generalised the skill - proof is in the George Foreman mini grill as I type.

I am sure you are groaning with the inevitability of me turning up to comment here. I just feel very blessed to have kids I can reach and relate to on their terms, and understand - after feeling like they were lost to me (or expected to accept that) for so long.

Like I said recently, if someone had a magic wand and I could have two tiny babies back; I wouldn't change them one iota. They are great little healthy people with extra powers. I would however change the decisions I made, and pursue much more doggedly the kind of help and intervention I am getting now.

And I would wear sunscreen.


kathleen said...

That was just a lovely post...thank you. I have always said that before my sons were diagnosed...they were my sons. Very shortly after diagnosis...I realized that they were still my sons..I don't know if that makes sense or not..I too have been caught in the crossfire of "why haven't you tried this-done that-explored the other thing what do you mean they only eat five things?" My only response is that they are happy, they thrive and most importantly-they have joy. They learn and grow at their own pace They are who they are-and I am blessed.

Gonzo said...

That just made me smile from ear to ear.

Love how you mention ABA in the same vein as quackery.
The thing I will never get about the parents who are so feverishly excited about it is this:
If ABA, (which has been around for decades now) was so successful, there must by now be legions of autistic adults, all super high-functioning and super happy about their improved life thanks to ABA.
Where are they?
If they exist, they sure would have an urge to go public singing its praise, trying to convince parents to apply this method to their children, right?

The thing about ABA is that parents often confuse "normalcy" (as they perceive it) with happiness.
Look what a behaviourist has to say about ABA in a comment to that Salon.com article:

"It's clear that aversives (punishments, painful methods) just don't work as well as reinforcers, so there is absolutely no justification for them. Just because some people use them while calling themselves ABA practitioners doesn't mean you've got to discard the whole approach."

The therapist is saying that aversives (which were they applied to non-disabled people would be called "torture") are wrong because they don't work, not because they are reprehensible and cruel.
How can people without any human decency judge on what is "appropriate" behaviour?

AnnB said...

It is our culture in the West to believe that we are in control of every aspect of our lives. It is seen as reckless in the extreme, not to have a 5 year plan, pension plan, property portfolio and an education plan for our kids. We spend so much energy trying to control all these elements, that somewhere along the line the art of living gets lost.

For what it's worth Sharon, I think you are giving your son the most amazing start in life, that of a home filled with unconditional love and a space where he can be comfortable in his own skin. Trust your instincts and continue to enjoy your beautiful children.

Anonymous said...

We have to let them be themselves for there is no other way for them to exist otherwise. I have been passed numerous information about various diets and programs but I haven't tried any. Amy has a wonderful support system at school and I do my best for her at home, although we are seeing a consultant at the end of this month to discuss adolescence - which scares the hell out of me! It doesn't matter what label has been put up on our beautiful children, they are ours, and they are loved.

Fabulous post.

CJ xx

Jean said...

Sharon this is a wonderful, hopeful post full of love and acceptance (not to be confused with "giving up"). I love the attitiude of not feeling the need to aggressively "fix" your child who is already, perfectly, himself. Your post resonates deeply with me. Thank you. XXX

Anonymous said...

I don't know how to get answers to my question. Maybe you can offer suggestions or steer me in the right direction? I'm aware you home school your son and that this may not apply to you. But if you know of anywhere I can get help I'd be grateful.

I've discovered that some boys in my son's class believe he is brain damaged. Now they're not evil children and were happy to talk to me about this. They just want to know what's 'wrong' with their well liked classmate. Age of these children 8ish.

I've mentioned it to his learning support assistant and class teacher. I think a class talk is necessary. The problem is my son thinks he's perfectly normal with something called in his words 'I forget what is it again? Oh yeah Autism.' Of course to us at home he IS perfectly normal. He's aware that he behaves differently from others but he's very happy about this difference.

The county autism team have suggested that my son not be present when the talk is given. I don't know about this.

Can anybody help?

How do we go about this? How does anyone explain autism to a bunch of children without resorting to cats and mawkishness?

Sharon McDaid said...

Hi Hammie, sorry it's taken me so long to get back to this topic. My brain was filled with other stuff in the past week.
Your comments are always very welcome!

You know more about the practice of ABA than I do. But from what I have read and seen, I can't see how it can be called a *science*. It's not like the natural sciences. What are the core theories of behaviourism? From wiki, using Skinner's definition, it's "all things which organisms do — including acting, thinking and feeling—can and should be regarded as behaviours." So people are seen as conditioned responders in skin. Are we really just our actions? I don't believe in the soul but I do reckon our mental state influences our actions and not just our environment.

Can the central theories of ABA be tested and potentially falsified as those of all sciences potentially can?
Can there be a new paradigm of ABA? Can research ever totally change practice? Is it evidence based? I don't think ABA meets any of these criteria for what I'd say defines a science.

I don't think any form of education is a science, but I don't see any such field other than ABA claiming that it is a science.

It is important to tailor children's learning to their particular abilities and needs. You don't need ABA for that. Anyone telling you that autistic children are unreachable is an arse.

While the environment is important and adapting it to best suit the child is important, it's not everything. Dedicated, caring and enthusiastic teachers who really want to see our children succeed and who are creative and adaptable to help them and well run, well funded schools help too. I know it's no longer about normalising children, and that the ABA used is not so coldly analytical in the classroom as it was. But it doesn't have to be ABA schools and I think far more could be done with the same amount of funding if it wasn't used to pay for ABA trained teachers only.

I won't be at the Belfast conference but perhaps I could go in and we could meet up?

@Kathleen, thanks. I know exactly what you mean about your children being unchanged by diagnosis. You are blessed, and so are they.

@Gonzo, I really don't understand the emphasis on ABA as if it's the best thing ever. Like you said it's very old, and it has not changed nor has there been any good, well run studies proving its effectiveness, despite what a US surgeon general once said. I went to an ABA talk when Duncan was just diagnosed. It was by the top ABA bods in London and supposedly part of a big ABA study. The presenters harped on about the ancient Lovaas paper as if it was meaningful, and the criteria for being accepted were very strict. I mean, besides being rich enough to pay for the very expensive therapy, your child had to have an measured IQ over a certain limit (forget what, but over 80 or so) and to be younger than 5 or so.

Your quote shows that no matter how it's dressed up as nice and kind these days, the tenants of ABA (and some practices) still are unethical and abusive.

@AnnB, you've got to try to get the right balance. Thanks for your lovely words.

@Crystal Jigsaw, they exist as they are meant to exist. It's annoying when some people interpret that sentiment as "let them fester" but that's their problem. Adolescence is scary anyway. There are some things I have to worry about with my non autistic children that will never concern me with my autistic child.

@Jean, wow, how lovely. Yep, it's no more about fixing him than it is about fixing his siblings.

Sharon McDaid said...

@Anon, I've got some ideas but I'm going to post this as a separate blog post to see what others think too.

Kro IT Solutions said...

Best of luck tonight at the IBA. See you there!