Showing posts with label Applied behaviour analysis (ABA therapy). Show all posts
Showing posts with label Applied behaviour analysis (ABA therapy). Show all posts

Monday, May 13, 2013

'The soundtrack of my life'






















By Jason Nolan


I have always made sense of the world through sound and music, so it's not strange that the music of my child and teen years, the late-70s and early-80s, had such an impact on me. I’m also autistic, and have a strange obsession with words. Sound, music and words are a part of my echolalia—the automatic repeating of what I hear and read—that have become important placeholders for my thinking.

My music is probably not your music and my music was largely angry music. What I remember is a time of anarchy in the UK: not that of the Sex Pistols, but rather well thought-out social protest. A quartet of songs come to mind that influenced my thinking on social justice decades before I located myself as someone seen as ‘other’ or different in a manner reflecting these voices.

Tom Robinson’s twin anthems “Sing if you’re glad to be gay” (1977) and “Power in the Darkness” (1978), and Ian Dury’s “Spasticus Autisticus”(1981) are obvious statements about racism, homophobia and ableism. Although I was neither gay, a visible minority nor (as I thought at the time) disabled, these songs spoke to me in their rage against intolerance. The Only One’s “Another Girl, Another Planet” (1978) was an unrepentant challenge to the social norms proscribing self-medication and drug addiction, as well as a statement about feeling like being from another planet. Incidentally, this song plays through the opening credits of the comedy Paul (2011), a movie about an alien trying to get home.

I chose these songs because they all popped into my head this morning, one after another. But there is always a logic to my seeming randomness. I was thinking of a title for this piece and I thought of translating “Autistic Professor” into Latin: something like “Professorius Autisticus.” But I thought it sounded too much like “Spasticus Autisticus.” And as the train of thought left the station, I was overwhelmed by the associations of the music and mood of British pub rock from which the music sprung. In a few moments I’d worked out all these songs, and had to get up to write it down. It was 5 a.m.

My sounds and my music rotate at high speed around the central core of me. It is not anyone else’s music, just my way of ordering and making sense of the world. Take it away from me and you will see a catastrophic meltdown. But you can’t take it away from me. The words and sounds echo in my head whenever I need to flush out the crass sounds of the world of typical folk. Conversations, trucks reversing, air conditioners, fluorescent lights’ 60Hz hum, that strange 13kHz reverberation of the tinnitus that follows me wherever I go all bleed into nothingness when the songs and sounds I like take prominence. Call these my auditory stim, even though the sounds may be swirling only in my head; I’ve long since been socialized out of making strange vocal utterances.

Luckily for me, I was a latch-key child. When I grew up there was no MTV, Disney Channel or CDs, and little of the mass-marketed musical commodifications that today overwhelm children and deaden their senses. But neither was I overwhelmed with prescribed parental culture. My parents had few records I remember. I only remember Festival of Light Classical Music (Reader’s Digest), A Taste of Honey (Herb Alpert), Living in the Past (Jethro Tull) and Beyond the Fringe (Peter Cook and Dudley Moore). Most importantly, however, I was never institutionalized in daycare, and subject to a standardized regimen of age- or developmentally-appropriate music. Jethro Tull’s counterpunctual Bourée, and Liszt's Hungarian Rhapsody, are the two songs I remember transporting me the farthest. I would get my stim as I hummed along and conducted in time with the music.

Largely left to my own, and living on my own, on and off since I was 17, I have been free to form my own acoustic palette of sounds and words that interest me, soothe me and help me to organize my thinking. They are not sounds and words that others might choose, but as always with me, they spring forth fully formed from my lips or fingertips, or merely float about in my mind. I do not plan what I am going to do or say, and each word written here has been laid down one after another without reflection or compositional intention. Most importantly, they have not been prompted, directed, demanded or cajoled by anyone according to anyone’s notion of what should go where, beyond the general influence of having read too many books and having finally figured out how to construct sentences and paragraphs.

My words, like my music, like my movements, choices of clothing, tastes, curiosities, interests, desires and passions are, to me, intrinsically situated in myself, and are the foundation of my motivations. To take them away from me is to remove me from myself, and there is nothing left.

As I sit here, age 50, as a professor and director of the Experiential Design and Gaming Environments Lab at Ryerson University, I don’t have to wonder how I got here. I got here because I fell through the cracks somehow, and was largely left to my own devices. Without heteronomous (that is invasive or helicopter) parenting, institutionalizing influences or the normalizing of commercialized children’s culture, I have survived largely intact. My therapeutic interventions followed the social rather than medical model. I was shown how to engage with others when I wanted to, and the normalizing expectations that were as onerous as any Acquired Behaviour Analysis (ABA) session were directed at enabling me to accomplish basic tasks and social interactions. However, there was so much room for me and my interests that both escaped below the radar or were allowed to roam unchecked, perhaps because they were not so outlandish. Or perhaps because, by having such outlets and freedom, I was not so over-stressed as to feel the need for a more dynamic mode of expression.

Left on my own, I was a happy child. When I was forced to engage I was not. Yet I did like being around people when I was able to choose, and I was always interested in knowing how to engage with others when I was the one choosing when. John Locke said that we should keep children healthy and safe from harm and from harming others, but otherwise give them no parental interference whatsoever, neither direction, admonition or even toys. They should be left on their own without adult influence until they so choose to come to us. They will come with their own intrinsic interests and motivations, their own goals and aspirations, their own sense of self. For, as he put it, there is nothing so sad as an adult who does not know what drives his or her own passions.

We live in a world where few have the chance to ever learn what really drives their passions. We live in a world that does not provide equitable support and opportunity for those of us with non-standard and inconvenient special needs. We live in a world that lacks respect or understanding for diverse ways of thinking and living. We live with parents who want the best for us, but are often lead to believe that the relative anonymity of neurotypical and institutional norms—trying to fit in and act normal in school, social situations and the workplace—are the only path worth following.

If our goals, and the goals we have for the children in our care, is to help them to be all they can be, then it is incumbent on us all to ensure that we are doing everything we can to nurture every scrap of intrinsic interest in ourselves and all children, in the face of institutionalized norms and standardizing influences.

I fell through the cracks, and luckily not much attention was given to try and fix me. And what was tried, didn’t work very well. Yes, I dropped out of high school and worked a string of dead-end jobs, then returned to high school when I found an inclusive learning environment that helped me find my interests and strengths. I wandered through a liberal arts education, slowly learning how to communicate properly with others through the pages of stories of how others engaged. After a dozen years fumbling through school and jobs and even some teaching, I realized that I wanted to learn about learning.

Another dozen years later I got my first full-time job, at age 43. And I sit in my lab, with grad students working on various projects, while the soundtrack of my life plays on the speakers at my desk, perhaps bothering others somewhat. But I know it is the sea in which I swim. Brian Eno’s “Another Green World” or Hawkwind’s “Quark, Strangeness and Charm” can be heard day in, day out. These sounds are my stim. And it is this stim that makes the world possible.

Friday, February 19, 2010

A mixed bag

Hi all -- Ellen at To the Max has a contest where American readers can win a $50 CVS pharmacy gift card by sharing game and play activities that promote their child's development. Many of Ellen's followers have shared their tips in the comments section.

Enjoying the small things is an exquisite blog where a mom of a new baby girl with Down syndrome recounts her experiences in words and stunning photography.

A couple of weeks ago, this question was posted on the BLOOM blog in reference to a post about inappropriate conduct that occurred at a private ABA centre.

If a person wanted to check credibility/incident reports on an establishment that is involved with special needs children, where do they call? Do all therapy centres and daycares have to be registered? And with who?
Here’s a response from staff at Bloorview nursery schools, which applies to Toronto and Ontario (readers elsewhere will need to check requirements in their jurisdiction):

All daycares must be licensed with the Ontario government and the results of inspection must now be posted for public view. There is a graph to show areas of compliance and non-compliance by percentage.

As for credibilty/incident reports, it is our understanding that the difference between applied behaviour analysis (ABA) and (intensive behavioural intervention) is that ABA settings are funded in such a way that they can accept payment through private-health insurance. Other than that, we think there is very little regulation. Both ABA and IBI programs should have a psychologist attached to them. If they don’t, that would be a red flag for parents.

The challenge for families is understanding which programs have checks and balances such as registrations to operate, annual inspections and reporting duties that can be accessed publicly. In the field of children's services, IBI-ABA services for children are relatively new. The number of not-for-profit programs has not kept pace with the profit-based programs and services. There are many private programs, schools and preschools around that 'specialize' in the services of IBI-ABA. As the non-profit options seem so limited, families they have to work with what they have. Parents trust that the service providers operate all parts of their program at the highest possible standards, using the most up-to-date methods and trained staff. We know this is not always the case.

The program spoken of in the blog was defined as private. However, if a parent was unsure of a program's status, our advice would be to:

Ask if the program/service has any provincial/state or city funding. A “no” to both probably means the program is private and has less formal public reporting structures regarding credibility/incidents. If the answer is “yes,” there is likely a way to check the history of a program. A parent would need to call the ministry or department the program is funded through (for example, Ministry of Health, Ministry of Children and Family, Toronto Children’s Services). For programs with no funding ties to tax-payer dollars, parents are on their own to ask the “what if” questions.

The conduct that concerned the parent in the blog could also be reported to the therapist’s respective professional colleges or universities.

In Toronto, the Geneva Centre for Autism can provide helpful advice to parents.

Wednesday, November 4, 2009

A cross-country quest for therapy


In 2006, Stacey and Jonathan H. uprooted their family from Ontario – where they had family and friends and Jonathan worked as a teacher – to Calgary, a province Stacey had never visited. The year before, their twins Will and Owen, 2, were diagnosed with severe autism and they were still on a wait list for publicly-funded applied behaviour analysis (ABA) therapy. The family moved west in the hopes of getting co-ordinated, provincially funded ABA intervention, and other services. I interviewed Stacey (above with Owen, middle, and Will far right, now 6, Jonathan and Jake, 8, far left) about how the family made this decision, and how they’ve fared.

Me: How did autism affect the boys when they were first diagnosed?

Stacey: They were both completely lost in their own worlds, non-communicative and had unusual behaviour. Will ate rocks and picked every loose thread out of our couch until it had to be thrown out.

Me: When did you realize you couldn’t get the ABA and other supports the boys needed?

Stacey: There was a wait just to get the diagnosis. I started voicing my concerns prior to their first birthday, but they didn’t have an assessment till they were two years and four months. They were deemed eligible for early intervention, but then were put on a wait list and nothing happened. I quickly recognized I had to surround myself with other parents of children with autism. We got involved with a group of parents and that’s where we learned about families whose kids had been on the wait list till they were age six, which was the cut-off in Ontario. We learned we couldn’t expect anything in terms of funded ABA services.

Me: What did you do for ABA services?

Stacey: We paid privately for 20 hours a week of ABA. For both boys, that cost about $7,000 a month. We wanted the boys to have 40 hours a week, but that would have cost over $160,000 a year.

Me: How did the lack of funded services and the financial pressures affect your family?

Stacey: It was devastating to feel like we couldn’t meet the needs of our kids. My husband felt like he couldn’t provide financially. I felt like I was an educated person, yet I couldn’t get through a day with my own kids. Because the boys were so challenging, doors were closed everywhere – even for things like babysitting or daycare. We had to reach out to family and friends for financial help. It was terribly humbling, and also humiliating. Revealing that we were in need made people uncomfortable. We lost many, many friends, but we also gained friends we didn’t know we had.

Me: When did you first think seriously about moving to find publicly-funded services?

Stacey:
The tipping point came when a group of our friends held a giant fundraiser for the boys at a pumpkin farm. They sold tickets and had a pig roast and games and activities. Hundreds of people showed up and we raised $15,000. It was overwhelming and inspiring. But then I realized it would only cover one month of therapy and the boys would need help for the rest of their lives. It seemed a huge amount of money, but it was just a drop in the bucket. That put us into desperate panic mode to see if we could move to get funded services.

Me: How did you settle on Calgary?

Stacey: I didn’t realize at first that services were different from province to province. Then I read stories about families moving to Alberta. I made a call to a children’s hospital in Calgary and found out they were holding a resource fair for children with autism. All of the ABA service providers would be there. We couldn’t afford it, but I booked a plane.

At the fair, we were offered choices of government-funded ABA agencies that we could work with. In Ontario, we were on our own to figure things out with private providers, but in Calgary the agencies, the doctors and the government had co-ordinated their efforts to make sure everyone got the optimum program possible.

I found an agency that offered a government-funded, full-time ABA program that included half days at home and half days in a preschool, which was exactly what we wanted. The agency said that if our kids were eligible, we could sign up with them and they would help us through the process.

We moved in July, and I had a social worker in my home within a week, assessing our needs. We went before a multidisciplinary panel in August that oversees ABA services, and services for the boys began in September.

Me: Were there other differences in funded services in Alberta:

Stacey: In addition to specialized ABA services, the government puts an enormous amount of money into preschool funding for all children with special needs, so you can access preschool programs run by people who know how to work with our children. We were also automatically eligible for family support services, which included expensed funding for community, behaviour and respite workers. We even received funding so that our older son, who had had a hard time with the move, could receive counselling. Any extraordinary costs can be reimbursed.

Me: Why do you think there's a strong commitment to services for children with autism in Alberta?

Stacey: There’s a different mindset here. Early intervention is believed to be a right of children, and that if you intervene early, there won’t be such a financial burden on the province in later years. The other huge difference is the co-ordination of services. For example, when I met the social worker a week after we arrived, she immediately connected us with a pediatrician and a feeding clinic. All of the players here work together.

Me: What was the greatest challenge in moving your family?

Stacey: The biggest problem was leaving family and friends. They had not only supported us, but been a tremendous support to the boys. The likelihood of the boys forming their own support system in Alberta was slim, but at least in Ontario they had that built-in core group of family and friends that loved them.

The other major challenge was financial. As a teacher, my husband wasn’t going to make more money in Alberta, but the cost-of-living is higher. We sold our house in Ontario for $140,000 and had to buy a house that cost almost half a million dollars. We traded one expense for another, but at the end of the day we got the services for the boys we never thought we’d have.

Me: How has the move benefitted the boys?

Stacey: In every way. They don’t have parents who are living in constant stress. It eased the tone in our household. We’ll always have stress, but not the same kind of desperation, when you have no options.

In terms of intervention, I don’t like looking back to consider what their lives would have been if they didn’t have therapy. Four years ago, I had boys who wouldn’t look at me, who wouldn’t let me touch and hold them. Today I have little boys with challenges. Will and Owen have personalities, they experience emotion and they experience life with us and their brother.

Me: What is the situation like now for families considering a move to Alberta for services?

Stacey: We came at the perfect time, but in the last three years, so many people have moved here that the caseload has increased hugely. If you go to a meeting here for parents of kids with autism, half of them have come from Saskatchewan, British Columbia and Ontario. The numbers are so great that Alberta seems to be becoming pickier with their intake process. If your child is high-functioning, you may not qualify for specialized ABA services. Each family has to assess their own individual situation to figure out what’s best for them.

Stacey writes a blog about her boys at Willowjak – "our family of five, with autism times two." Willowjak combines the names of her sons Will and Owen, now 6 who have autism, and Jake, 8, who is typically developing.