Adjusting the Ratio

The private SLP we had hired was an invaluable resource. She had done ABA programs in the past and had extensive experience teaching language to autistic children. She explained how our son needed to learn more non-verbal social skills as well as actual language. These non-verbal social skills were things like social referencing which occurred when a child spontaneously looked to a parent for direction or assistance. Our son needed to learn how to take turns and read body language. He needed to learn how to request assistance as well as tangible objects.

I had already scrapped the 'look at me' program since it seemed so artificial and unnatural. Cynthia suggested some alternative activities to increase eye contact: swing my son in a blanket, with his head exposed, then stop. When he looked around to see why he was no longer moving, say his name and when he looked at me tell him 'good looking' and swing him again. Another one was tickling him while he lay on his back and I hovered over top of him. I would pause before tickling him and wait for him to look at me, saying his name if necessary to command his attention or tapping my hand beside my head at eye level. When he looked I would compliment him on 'good looking' and tickle him. I started another routine too: When we were giving him toys I would hang on to them while he tried to free them from my hand. I would say his name and wait for him to look in my eyes before releasing them. Sometimes I would raise them to my eye level as a further prompt. When he would look in my eyes I would tell him again 'good looking' and give him the toy. I extended these 'eye contact' programs to include all kinds of silly physical interactions such as airplane rides (where he was balanced on my feet over my head) and the 'human slide' (where I would raise him up on my legs, above my head and hold him there with my arms until he looked at me and then I would slide him down to my chest). It was the same formula: start the activity, pause and wait. If he didn't spontaneously look then prompt by saying his name or moving my eyes into his field of vision until he looked. He found these programs fun and his eye contact began developing naturally. He was learning and so was I. Therapy is suppose to be fun. As Lovaas once asked: "If the the therapist isn't having fun, how do you think the child feels?" Slowly I was learning to play like a child and to make myself a reinforcing presence, not just a stern task master.

Cynthia suggested a 'communication bag' which was a small drawstring pouch filled with various small toys that my son found interesting but had difficulty manipulating on his own. The idea was to create a situation where he had to ask for help and interact with us to get the toy to work (called 'communicative temptation'). Off I went to the dollar store to buy things like 'pop up' disks that had to be inverted first before they popped, spinning tops that had to be wound onto a shooter, egg timers filled with sand or coloured water, a rain stick, wind up gadgets, pull-string vibrating stuffed toys, hopping frogs, a ball on a long elastic wrist strap that is thrown but remains attached to the arm so it bounces back, a paddle with a ball attached to it, a party horn that unrolls with each blow, a ball that lit up when bounced, stress balls that when squeezed bulged in funny places and several other bits of junky plastic that would normally be found in a birthday party loot bag. I would change up the contents to ten different items each day so that my son had novel items with which he was not familiar but still found interesting. The goal was for him to ask for help by examining the object and then handing it to us to ask for help. We began working on the word 'help' which sounded like this: "haa-pah." We would go through the bag, one item at a time, making various single word descriptions and complimenting him on his efforts to speak, look in our eyes and take turns. I called it a 'stim bag' -- they were all toys my son found visually stimulating and it was meant to stimulate social interaction and language.

Cynthia also suggested I work on one target skill per program. Up to this point I had been teaching him several skills from each program altogether. In a regular ABA program the therapist usually teaches one target at a time (called a 'mass trial') with several repetitions each sitting and once the child has 'performed' correctly 9 out of 10 times in two successive sittings, that skill moves on to random rotation. Random rotation is when the child is asked to perform several different tasks within the same program or skill set (such as touching his head, waving his arms and stomping his feet in a gross motor imitation program), all of which have been previously 'mastered' when asked separately in the mass trial phase. If the child gets those correct at least 90 per cent of the time in the random rotation phase (which would be three times in a row in three different sittings) then it is considered a mastered target. These mastered targets would be used as the 'distractors' in future random rotation trials of other targets within the same skill set. As complicated as it sounded, it was an easy formula to follow: choose a skill and mass trial it until my son got it right 9 out of 10 times in a row, two days in a row, then ask him to demonstrate that skill again in three more sessions along with asking him to demonstrate other skills he had already shown he knew. I had been doing random rotation of multiple targets from the very beginning in an attempt to teach my son several skills at once. No wonder he was having such difficulty remembering what to do! Why hadn't I thought to do this before? I chastised myself for my stupidity but was exceedingly grateful that Cynthia could fix my sequencing of individual skill mastery. With this change in programming fundamentals, my son began to learn at an increased rate. He was mastering targets every few days and we were quickly moving on to the second tier of imitation skills, where we combine different imitations into a string of actions he has to perform.

Next we focused on teaching turn-taking skills more effectively. We had a small covered ball pit in our kitchen and we modelled saying "my turn" as we dropped ball's into the top opening. We dropped pennies in a bucket of water, the flips and turns of the pennies as they descended visually pleasing to my son. We threw balls of socks into a laundry basket. Any repetitive and fast-paced physical task with a minor built-in reward was a good option. We dropped marbles down tubes and watched them roll out the other end. We shovelled sand into a sieve and dropped rocks into an empty water cooler bottle. I realized my son greatly enjoyed visually stimulating toys and combed the clearance bins to find as many as I could. I purchased a ball pounding toy where we took turns using a hammer to pound balls into the opening and then watching them roll down a series of glassed-in slides. My son didn't like to share that plastic hammer either but he was no longer hitting people with it.

We set up a visual schedule, using hand-drawn pictures. I explained about the Velcro and she suggested using small magnets instead. The visual schedule could attach to our metal fireplace surround. I took photographs of the different activities we would do in therapy: the blanket, the stim bag, my hand for tickles and so on. I reasoned the photographs would provide a clearer understanding to my son. I had to take the film to a photo store to be developed. This was in the days before digital cameras and home printing. I often wondered what the developers thought of the hundreds of photos I took but resisted the urge to explain. I bought a laminator so the photos would be more durable with continued use. I learned about choice boards too and placed laminated photos of all his preferred videos in a binder. He would leaf through the binder looking for his choice and then bring it to me, saying 'pah' or 'haa-pah' so that I would turn on the video. I was thrilled with this development: previously, he would stand in front of the television, picking up random VHS cases and tossing them aside while he looked for the one he wanted. Often he would become frustrated and I would have a huge mess to clean up when he was finally successful. These small adjustments were making our lives, both in therapy and in life, run more smoothly.

Cynthia's greatest benefit was in setting up a vocal imitation program. She told me that we should teach the vowel sounds first and taught me how to place my hands or fingers around my face to help demonstrate to my son how to make the sounds. She explained the positions or the tongue, lips and jaw in making the sounds. She also suggested using a mirror so my son could see how he made the different facial expressions. For a boy who was limited in imitation skills, he couldn't tell if his face was doing the same thing as mine. Once we began using the mirror, he could better estimate what he should be doing. Again, I felt stupid that I hadn't thought to use a mirror to assist his efforts. I used the spin tops as reward for each attempt he made. He was fascinated by how they continued to rotate, the graphics on the top changing as the top slowed. He became very focused, learning to say all the long and short vowel sounds quickly. I taught how to do them to both workers and we practised them all the time. Soon he would be starting consonant sounds and then learn to combine them all to make meaningful words - or at least approximations of words. These one syllable combinations of consonants and vowels were called 'phonemes' and once he could learn to imitate these individually combined sounds we could start putting them together to make words. This was the process we used to teach him his first 100 words. It would take a long time and a lot of spin tops.

Our son was beginning to use 'pah' regularly when he wanted something opened (gate, fridge, a toy box) and 'bah' for bubbles or a bottle and 'dah' for down. He was understanding that language was a vehicle to get his needs met and he was trying hard to use it. Most importantly, he was using his verbalisation in a meaningful way. He was communicating, if not yet speaking words. Sometimes he would become very frustrated and scream or stomp his feet and hit me when he couldn't say a sound. Years later he would tell me that he remembered those times and his frustration came from having the sounds in his head but not being able to make his mouth say them. I wish I had known then how hard he was trying and how difficult the task was for him. I was impatient for him to speak and did not take the time to understand and comfort him in his struggles...yet another example of my failings as a therapist -- and a mother for that matter.

The other invaluable thing I learned from Cynthia was finding my own voice to express my own needs. I asked her what she thought of his female worker (the only one she had met). She hesitated and then said that she felt she lacked the proper skills and intuition to do this kind of work effectively, that surely I could find someone better suited and that prior experience was not always a good thing, especially if they had learned improper techniques. I decided I wouldn't have the worker return after her wedding. She hadn't given me a re-entry date yet anyway as her honeymoon plans were still not firm. Cynthia told me I was a natural at therapy and had great intuition when it came to behaviour modification. On top of that she said I was creative in choosing activities and materials and was obviously highly motivated to help my son. Whether she truly believed this or felt that I needed a pep talk didn't really matter because the result was the same: I was feeling unsure about my abilities so these words helped to bolster my confidence and motivate me to improve my abilities instead of wallowing in my past mistakes. Like a rower learning to co-ordinate her strokes, I was paying better attention to the mechanics of the process and the efforts of my crew members.

Our second hospital speech appointment arrived. I was excited to tell the SLP about the progress we had made with the private consultant. I had found a different entrance into the hospital so we could avoid the hot and noisy walk. We arrived on time and happy. However, once my son entered the SLP's office his demeanour changed: he remembered the visual schedule and the Velcro. As soon as he saw it he climbed under the table. The SLP had new toys and we managed to coax him to sit at the table. The testing began with play breaks between sets. His extra time in therapy had improved his attending skills but not his understanding of language -- or his tolerance of Velcro. Again the session ended with him in a full blown tantrum and poor test scores. We didn't have time to talk because he was loud and out of control. She told me she would call me with the next appointment so she could finish the testing. I hadn't had a chance to tell her about our recent successes. I left feeling disappointed but hopeful that in another month my son would be that much further along. I felt bolstered by the fact we had Cynthia Howroyd to help us. She could help me co-ordinate the programs and workers so that things would run more efficiently. She could assess when someone's timing was off and call out to that rower to adjust their ratio, to get in sync with the pace and the program. It was going to be smooth progress now!

All Hands on Deck

We needed help and lots of it. My husband started making telephone calls. The first was to the president of the provincial autism society. As luck would have it she lived in our city. She told him there weren't any therapy centers or specialists in our city and that the few experienced professionals lived elsewhere. She talked about waiting lists and lack of financial support and government programs. As she talked my husband couldn't help but notice how cheery she was. She sounded like she had a smile on her face. Perhaps it was the fact that misery loves company or she just had a naturally sunny disposition but the news she delivered didn't match her mood so my husband found the conversation disconcerting. We knew we could expect a two year wait before seeing a speech therapist at the hospital but he learned it was even longer to see an occupational therapist. She told him there weren't any organized committees or support groups either... and nobody was doing Lovaas ABA.

She did espouse on the virtues of the GFCF diet. When my husband told me about this treatment, I searched the Internet: GFCF stands for Gluten Free, Casein Free diet... meaning we were to feed our son no bread products made with wheat and no milk products whatsoever (casein being the milk protein). How could we do that? Our son's only source of nutrition was milk based: Similac baby formula, Pediasure liquid supplement, milk and shredded marble cheese. We had just succeeded at getting him to eat Arrowroot biscuits and dry Cheerios. Those were both wheat products. I read lots of testimonials from parents on the effectiveness of this diet but I couldn't find a single medical report or scientific study. It seemed like so much work with no guaranteed positive result. It didn't cure the autism but parents had reported increases in eye contact and interaction. Didn't ABA do that too? I had limited time and energy and didn't relish the thought of making every recipe from scratch with ingredients purchased at the one organic food store in our city. Especially when there was little probability our son would eat any of it. I put a pin in it.

Madame Sunshine also talked about vaccine injury. She said her son had been fine before his 18 month immunizations but afterwards had regressed in language and behaviour. Our son had had all his needles, on time and with full viral loads. We hadn't noticed any regression. He was distant and cranky from the day he was born. I remember nursing him and when our eyes met he would immediately squeeze his eyes shut, turn his head and begin to cry. It was as if somebody had stuck him with a needle. He did not return our smile -- ever. He only laughed when we were physical with him, when we tickled him or threw him in the air. He didn't play with toys but preferred to spin madly around in his Exersaucer, stopping suddenly and laughing with his head tilted up and his eyes rolled back obviously enjoying the dizzy buzz. He did not speak any words at all and never had. He watched his beloved Teletubbies and Blue's Clues videos silently. My 'name' was a particular gruff growl sound he made... it could have just as easily meant 'help' or 'get me out of the crib.' When he awoke during the night it was the only time he used it. Once he learned how to climb out of the crib he stopped calling for me completely, choosing to run up and down the halls screaming for half the night. All these behaviours were present before his 18 month needles. While this vaccine injury theory seemed alarming, I didn't take time to research it since our son's autism couldn't be changed by the knowledge. He had had all his shots, with no more boosters scheduled until the four year mark. What I needed to know now was how to change the present so I could change his future. Simply put, I didn't care how he 'got' autism, I just wanted to know how to get rid of it.

The most important part of the telephone call came near the end when my husband managed to get two names. There was a girl in the city who had autism training and was working with other kids. There was a mother in another city who was getting some funding. My husband called both. This girl was indeed available to work with our son. When I spoke to her she assured me she was fully trained by CARD (Center for Autism and Related Disorders) in New York City. She had worked in a neighbouring province (Prince Edward Island) where there was an ABA program for preschoolers.

When my husband called the mother she told him their worker was moving out west, to British Columbia or Alberta, both provinces with well established provincial ABA programs. She told him she received respite care funding through the government and used it to defray the costs of therapy even though it was designated as babysitting breaks for her. We didn't qualify for respite care funding. My husband was too good at his job of making money. When my husband discussed the unfairness of the income threshold with a social worker in the Department of Family and Community Services, she said that if we were on welfare we could get lots of services. I put a pin in that lifestyle change as well.

We had already hired a part time nanny, someone who could feed the baby and change diapers when I was in the middle of therapy. As luck would have it, she had grown up in the same small town as me, her parents and mine still residing there. She was -- and is -- a strong Christian woman who answered our newspaper ad without realizing it was me who had placed it. I believe God put that paper in front of her that day because Lugene was truly the answer to one of my many prayers. She was always positive, always ready to pitch in wherever it was needed. She had boundless energy and unflagging interest in the happiness of my children. Most importantly she kept the baby occupied while I worked with my son. Sometimes she stayed with both children while I ran errands. For the first time since our son was born I had a measure of freedom that comes with knowing your children are in safe hands.

We hired one of those rent-a-maid companies to come clean our house once a week. I didn't have time to scrub toilets. I was spending all my time researching programs and reading all I could about autism. My husband realized that despite the big picture goals, we needed to attend to the small details as well. He made that phone call and assured me it had nothing to do with my housekeeping abilities. I assured him it did but was grateful for the extra time nonetheless. I had so much to learn. A lot had changed since my days as a psychology major. I had graduated the year the Lovaas study was published. There were 15 years of information out there I hadn't read. I found myself regretting my decision to attend law school instead of finishing a master's degree in psychology, the first in a long list of 'should-haves.'

We had one other member of our crew: The provincial government had a program called "Early Childhood Stimulation" which employed individuals with university degrees in various child-related fields. We had been assigned a woman named Paula. She came once or twice per month for an hour to give gems of information on how to help our son. I loved her because she was a caring individual with great ideas and abundant resources. She brought toys she thought our son would enjoy, which I then reserved for therapy rewards. She was the first person to discuss reinforcement strategies and behaviour modification with me. She photocopied articles and left them for me to read. Every month we exchanged the toys and information for something new. Paula's greatest value came in her knowledge of the patchwork quilt of government services. She was the one who told us we needed referrals to the hospital's speech and OT departments and that we could ask to be put on both the "City" (English) and French hospitals waiting lists. While we wouldn't be able to get services at both hospitals, we would double our chances of being seen sooner by double booking. As well she told us that we could get the liquid supplement our son drank -- Pediasure -- through Public Health, provided we had a doctor's note saying it was medically necessary. This was welcome news since our son needed five cans per day to meet his daily nutrition quota and a case of 24 cost almost 50 dollars. We went through six cases per month. We mixed the sugary thick liquid with a can of 'Similac 2' concentrate and whole milk, both to lessen the sweetness and reduce the viscosity so it would flow more easily through a baby bottle nipple. Our son did not use cups or straws of any kind. He still drank from a baby bottle. We called our pediatrician and she agreed to fax a prescription to Public Health. I then called Public Health and ordered six cases which would be available the following month. We were not eligible to receive the baby formula under this program because our son was not a baby 'requiring' formula. We thought differently but our opinion didn't matter. Still, our food bill for his diet had been cut in half and I now had 300 more dollars every month to spend on ABA resources. Public Health and Early Childhood Stimulation were the only government programs we could access at this time. It was a drop in the bucket -- or more accurately a drop in the North Sea.

I typed up programs and put together a binder so we could keep track of what our son was learning. The highly recommended, greatly experienced therapist arrived for the first session. The first thing I noticed was her fashionable attire. The second thing I noticed was her perfectly manicured nails. The third thing I noticed was her poor grammar. The last thing I noticed was her therapy skills. I thought her voice was too lilting when she asked our son to perform a task so it came out sounding more like a suggestion than a command. She left the toy within his reach so he was distracted by its presence. Her delivery of the 'SD loop' (that is, the delivery of her command, our son's response and the presentation of the reward) was choppy, slow and inconsistent. She couldn't remember the exact way to demonstrate each action. I knew there would be a steep learning curve for my son but didn't expect there to be one for his worker.

Our son had learned certain skills: when you held out your hand and told him to "give toy" he would hand it over (most times). He had learned to hammer a plastic peg into a hole. He knew how to assemble gears which had rapidly become one of his favorite toys. It worked wonders as it had one central gear with a motor to which you added various other gears, all of which would spin. The sprockets had pleasing visual designs, made more psychedelic by each rotation. With each successive teaching trial he would earn a new gear to add to his creation. He would turn on the center gear and place his head at a slight angle to watch out of the corners of his eyes. He was now sitting for at least five minutes without a struggle and he seemed to be paying attention (but without eye contact). Occasionally he would disengage, his eyes taking on a far away look and his body going slack. We would wait for these moments to pass before returning to programming. One particularly exciting accomplishment was that he had learned how to point at objects on the computer screen. He greatly enjoyed playing a Mr. Potato Head game, as long as you were there to click the mouse where he was pointing. I toyed with the idea of getting a touch screen but I reasoned that would make the therapist -- or myself -- unnecessary. He was already spending enough time alone and this forced him to interact with us. I saved my money for other things.

During therapy I was seated behind my son, keeping him positioned on the floor and physically prompting him to perform the requested action by using my hands to move his hands or legs. He would not perform the actions independently. Sometimes when the therapist faltered in remembering how to do an action I would demonstrate it behind my son's back. She would have to repeat the command a second time with the correct action and I would scramble to get him to comply. It was slow going. Every time she would lean forward, her shirt would billow out, giving both my son and I a clear view of her bosom. She would often forget to fill in the data sheets. When we took a break, she would ignore our son and chat with me over her upcoming wedding or her weekend plans while I engaged my son in play. These awkward moments, inconsistent techniques and missed opportunities began to wear on me.

A routine was established and the weeks began to blend, the therapist coming three times per week and me filling in the hours in-between. She was getting married in the summer and would be unavailable for the month of July. I had read enough to know that my son needed many more hours of therapy. The books all agreed that at least 30 hours were required if recovery was to be within reach. We called the student job placement center and put in an ad for another worker carefully listing university education as a prerequisite.

My doubts about the therapist's qualifications festered. From everything I was reading, I thought that many of her techniques were not in line with the Lovaas teaching strategies. She used his name with every command. She was slow to praise. She used a lot of words when speaking to him and after delivering her command she would keep babbling to him instead of waiting for his response. She hesitated with every new trial. There was no flow to the process. She didn't seem to know the programs, even after weeks of doing them. If she had so much experience doing therapy why wasn't she more familiar with imitation programs? I questioned her about her education. She reiterated her CARD training. I asked her for the details. She hesitantly admitted that it was a weekend seminar for all government workers in the Prince Edward Island pilot project. She hadn't received individualized instruction and had had limited supervision during her work days there. All workers in the PEI program were following the same curriculum with this two days' worth of training. It was a boiler plate program with assembly line style delivery. I asked her if she had seen any children recover from autism. She shrugged her shoulders and said no but then again she had only worked in the program for a short time. I realized, to my horror, that this was the best there was in our city: A 20 year old with minimal education, few skills and no proper training. Other parents (including the local autism society president) had raved about her abilities. I sat there stunned for a moment thinking how this person was simply not good enough in my book. Her abilities just did not measure up. We needed someone better than me with my neophyte abilities to work with our son. I second guessed myself: were my standards too high?

And then it happened: the therapist sang "Do this" and touched her head with both her hands (sometimes she only used one hand). I reached for my son's hands but he had already begun raising them. I hesitated and held my breath. He placed both firmly on his head, palms flat against his hair, just like the therapist had done. I exploded in cheers and began hugging and kissing him. He fought me off so he could play with his promised toy. I ran to the telephone and called my husband. All my conflicted thoughts were washed away in a sea of joy. My son had learned to touch his head! It only took a month!

My conversation with my husband went like this:

Him: Hello?
Me: He touched his head!
Him: What?
Me: He touched his head! He touched his head!
Him: And that's a good thing?
Me: Yes! It's the first time he did it on his own!
Him: He touches his head all the time, doesn't he?
Me: No, not when we ask him to, he doesn't.
Him: Tell me again why that's important.
Me: Because he is copying what the worker is doing. He is imitating.
Him: That's great honey. I'm so happy. Um, can we talk about this more when I get home?
Me: Sure but this is a big thing. You should be more excited.
Him: Okay, I promise I will be when you tell me all about it later.

I don't blame my husband for not sharing my ebullience. He was at work when we did therapy, earning the money to pay for all these extra deck hands. We had made a deal: his job was to make money and mine was to spend that money to recover our son. He didn't recount to me the daily fluctuations in the stock market and I didn't tell him the ebb and flow of a therapy session. We had too many things on our minds. He made money. I spent it. Our son was improving. Enough said.

I was still on an emotional high the next day when we got a call from the city hospital's speech department. Our son was being given an appointment for a speech assessment in the upcoming month. I was overjoyed! Everything was coming together. Full steam ahead!

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.