Thursday, July 22, 2010

How do we get there from here?

In all my research I had concluded the only way to recover my son from autism was to 'do' ABA but there were some major questions to be answered before we could set out on our journey:

What is ABA?

ABA stands for Applied Behavioral Analysis and was first used by Dr. Lovaas at UCLA in a very famous clinical study published in 1987. Basically it applies Skinner's principles of behaviour modification by breaking down all learning into very small and specific teaching tasks, with positive reinforcements being given to the child for each correct 'target' (answer). It teaches everything from physical imitation to language to social skills to cognitive skills in a systematic way, with accurate record keeping and statistical evaluation. In parts of Canada it is also called 'IBI' which means Intensive Behavioral Intervention and I am told it is the same thing but I cannot confirm that. I can confirm that ABA is the ONLY scientifically proven method of treating autism such that 47 per cent of all children who undergo ABA completely recover in two years. All but one child in the original study showed marked improvements over the course of treatment. The original 1987 study and the subsequent 2006 W.E.A.P. replication study (Wisconsin Early Autism Project) have been published in peer reviewed medical journals and their results are irrefutable. The later study was over a four year period instead of the original time frame and the results showed the recovery was not only possible during those first two years but that children continued to improve and recover in the third and fourth year of the study. Of course I didn't know about the 2006 study when we started therapy. When our son was not recovered after the first two years of therapy I began to lose hope but we soldiered on. He was 4 1/2 years into therapy when the W.E.A.P. study was published. It was satisfying to read the results because it confirmed what I already knew: our son had continued to improve and would recover...sometimes it just takes a little longer.

What is recovery?

And why don't people say cure? Recovery is generally defined as the child being indistinguishable from their peers. I guess the professionals use this term because they are cautiously optimistic about the outcome for children and the word 'cure' sounds like something instantaneous, like a magic pill. I've heard there is a follow up study being done of those 1987 'graduates' of the original study. I mean, to pass tests and be deemed as 'no longer on the spectrum' is one thing, but how are they functioning in the real world today? I am looking forward to seeing those results. Who got married? Graduated university? Got voted homecoming king/queen? Got arrested? Lives a happy fulfilling life?

My definition of recovery is a little bit different. Yes, it is about indistinguishability (if that's a word!) but it's more -- it's not just in the way they act or talk to the outside observer but also in the way they think. The whole point of therapy is not teaching the child to memorize every object label, action or skill but rather to learn how to learn -- to be able to figure things out on their own using logic and reason when presented with a new situation. I like to explain it like this: when a very young child is exposed to a second language they learn that language in a way that allows them to think and dream in that language as well -- it becomes naturalized to them. Sometimes, like all those baby girls being taken out of China and brought up in North America, they lose that first language completely and adopt their second language as their mother tongue. I am English but live in a bilingual province. I will never be truly bilingual because I learned French later in life. Whenever I speak French I must translate in my head what the other person is saying, think of my answer in English and then translate it to French in my head and finally speak French. Sometimes I can do it pretty quickly but I have to rely on my memory to search for the correct words. And I still have an accent, my tongue unaccustomed to forming all those unfamiliar little flips and rolls so sometimes my intonation and pronunciation is a little off. It is definitely not a natural thing for me to speak French and there is no such thing as a casual conversation for me when it comes to conversing in this second language... it's a lot of work for me and I can get tired easily, quickly reverting back to my English -- my comfort zone -- as soon as possible. I like to joke that I speak French much better after a few glasses of wine: I'm more relaxed and don't over-think things. Yes, speaking French causes me anxiety because I know enough to know I am not quite 'getting it -- that I can't truly pass for 'one of them.' I think this is just like a young autistic child who learns all the stuff typical peers learn but in the less-than-natural setting of therapy. If they learn enough, early enough, they will begin thinking 'normal' as well as acting 'normal.' I put that word in quotes because it's rather an elusive term... perhaps it's better to say 'typical.' An autistic child who starts therapy later can still learn to act 'typical' but may not learn to think 'typical' so that the process is the same as my French: they will assess the situation, think in their head what they 'should' do or say based on their years of 'second language training' then choose their response. I think they have anxiety, like I do, because they feel different from their peers and must work very hard to maintain the 'conversation.' For some people I think they would say that this is recovery because the casual observer wouldn't be able to tell the difference between that child and a typical peer. I disagree because there are times when these kids slip up and revert back to their 'native tongue.' Like me speaking French, sometimes the words aren't there and their head is tired of trying to process the foreign language. Ultimately though what I see as the demarcation line is the fact that they are self-aware and know that they are out of step with their peers, that part of their time spent interacting is a bit of a guessing game as to what they 'should' do or say. Typical kids don't feel like that as they rely on their natural intuition instead of their memory banks.

This other telltale sign of true recovery is that there are no slip ups, no regression -- it's not like cancer where a child could be in 'remission' and then 'catch it' again... once they are 'fixed' it is forever. The child may still have a few quirks but what kid doesn't? As a kid I spent hours setting up Barbie tableaux and screeching at my sister if she touched them... maybe I was a little rigid (or a rotten sister) but I certainly wasn't autistic. My husband use to know the stats on every hockey player in the NHL when he was a child... maybe that made him a little obsessed (and very Canadian) but not autistic. My sister ate white sugar with lettuce, my cousin lived on peanut butter and my best friend had a mayonnaise sandwich everyday after school. Poor dietary choices for sure but not autistic. Everybody I know has weird and wonderful aspects to their personalities. As long as these qualities don't impede social relationships or interfere with their ability to navigate the world, then we should celebrate their unique characteristics. ABA isn't about turning a child into a socially acceptable robot... it's about capitalizing on a child's strengths to eliminate their weaknesses and enhancing their personality.

How do we get there from here?

To achieve true recovery, there are many factors that are fundamentally important: beginning therapy at a very young age (24 months or earlier), a program that runs a minimum of 30 to 40 hours per week, a comprehensive teaching strategy (which includes exposure to typical peers in a controlled setting) and generalization of these skills across all domains (which means parents are equal partners with therapists in providing the child consistent expectations of behaviours and learning opportunities). It includes not only working one-on-one with a child at a table but also playing games, singing songs, riding a bike, tying shoes, playing sports, having play dates, going to daycare, eating with utensils (or just learning to eat new foods), toileting, colouring, drawing, printing, math, reading, role playing, building block structures, building sand castles, playing dress up, making crafts, having conversations, telling jokes and so, so much more. It is a 24/7/365 job for all involved. Our house would become "ABA Central" because there wasn't a moment that our children weren't being "forced" to be engaged -- even bath time became a learning opportunity with us singing songs, naming body parts as we washed, using bath crayons to draw emotion faces and shapes on the walls, etc. When we drove in the car, we would name the colours of the cars, point out big versus little vehicles, say whether we were turning left or right, say when we stopped and "1-2-3 go!", demonstrate going fast versus slow, count the buses and anything else we could think to do to keep them paying attention to our world. It was every minute of every day, for years and it was so exhausting! All these little routines and habits came with time and practice. It became second nature to focus on every moment as a teaching opportunity.

One final clarification: ABA includes speech therapy, occupational therapy, physiotherapy and sensory integration therapy. It involves not only the 'discrete trial' approach of sitting one-on-one with a child and delivering a command, waiting for the child's response and providing (or withholding) a reward but also teaching through artifically created play situations so that a child learns 'incidentally' -- that is, learns skills while actually doing a natural activity. It can include using illustrated custom-made stories to teach cognitive understanding, visual schedules to help a child order their day and lots of other visual aids. It does NOT include chelation, special diets, vitamin supplements, medications, hyperbaric oxygen chambers, detox regimes, NAET, swimming with dolphins or riding horses. Some parents choose to do these alternative treatments either in addition to or in lieu of ABA but they are not part of a traditional ABA therapy program. I make no judgements on parents' choices for their children because they are the ones who have to live with their decisions not me -- I am supremely happy to be living with my decision and I wish for all parents and their children the same happiness.

As overwhelmed as I was in learning all this information, it made perfect sense to me. I was a pragmatist and thought that there was no need to re-invent the wheel. I now knew the facts and would just need to learn how to 'do' the actual therapy. The easy part was over. The hard work lay ahead.

No comments:

Post a Comment