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.
Immigrant mothers face a brick wall trying to get services for their children with disabilities in the Greater Toronto Area, says one mom of a child with autism who's also a social worker and University of Toronto professor.
“I’m supposed to know how to get through, and I don’t,” said Charmaine Williams at the Mothers Speak Up! Café Scientifique at Holland Bloorview yesterday.
The event brought together mothers and service providers to discuss the findings of a York University research study into barriers facing immigrant mothers of children with disabilities.
Despite her professional qualifications and the fact that she speaks English, Charmaine described the health, school and social supports for families like hers as “a bureaucratic obstacle course.”
The York University research on 30 immigrant mothers in the GTA and 27 service providers found a long list of barriers: fragmented services across the city that are hard to access and get to on public transit; long waits; language barriers; employers who don’t accommodate parents who need flexibility to meet the needs of their child; poverty; and discrimination by service providers, especially in schools.
“The more visible a minority you are, whether it’s your language or you’re black, the lower the expectations of the school,” said Sharon Smith, a mom with two children with special needs who immigrated from Trinidad.
Sharon said it was harder to get appropriate services for her son with significant medical and developmental disabilities than for her son who was highly verbal and only had social issues.
"It's not just my race,” Sharon said. “It’s also discrimination based on the degree of disability. My older son is quite verbal with social issues, but the school has been very supportive. But it’s very difficult and a constant struggle to get school supports for my younger son with seizures" and more significant language problems, she said.
“It seems that they make a judgment on what value people like my disabled child will be to society in the future” she said, and allocate resources accordingly.
Yana Skybin, a settlement counsellor with YMCA Newcomer Services in Simcoe County and mom of three children with autism said “just speaking with an accent” can lead to unequal treatment.
“[Service providers] ‘downtalk’ to women, even those who speak English,” Yana said. “If you don’t know how people communicate [in this culture], they assume you don’t have any education. When [mothers] don’t understand the system or speak with an accent, they treat them as if they have a disability. It is not an equal conversation.”
Yana noted that when she immigrated to Canada from the Ukraine she didn’t understand the “politics and interpersonal skills” needed to effectively advocate here. “At first I was too direct.”
Gail Jones, director of community support at Kerry’s Place Autism Services, said government-funded services “are not set up for people who don’t speak English or French.”
She also noted that cultural differences in how disability is understood can make it hard for families to get what they need. For example, she told the story of a family that didn’t follow through on behavior strategies they were given for their child.
After a number of staff attempted to work with the family, they decided to change course. Instead of focusing on behavioural intervention, they helped the family develop a network of support with their faith community.
“As the parents saw people from their faith community accept this child and the disability, only then could they accept it,” Gail said. “Other professionals might have wrongly labeled the family as non-compliant, instead of being flexible in their understanding and support approach.”
A mother noted that in the Asian community referring to your child as having special needs “is losing face. So parents will make excuses. My child is shy. She’s fine, she’s just afraid to talk to strangers.”
An advocacy group representing 70 Chinese families with children with disabilities said they were unable to get government funding because their parent support group is conducted in Mandarin.
Many mothers who suspected their child had a developmental issue were not believed, they said, by health and other service providers. Sometimes their parenting skills were faulted.
“It took two years to get a diagnosis,” Yana said. In the meantime, she was instructed to go to parenting courses, where she found that “90 per cent of the parents had children with special needs.”
Many of the mothers became single parents when their husbands left.
In recounting her despair at trying to cope with her childrens’ constant meltdowns and disbelief from service providers—including being told one child was simply “spoiled—” Yana recalled “hitting the bathtub with my hands until they hurt.”
Social isolation added to the stress. “People don’t know how to talk with me about being a mom of a child with a disability,” Charmaine said. “Other parents avoid [us] and [my child] becomes invisible.”
Sheila Jennings, the Mothers Speak Up! project coordinator and a lawyer doing graduate research on the rights of moms and their children with disabilities to support, noted that attendance at government-funded ESL programs for adults posed a barrier because of strict attendance policies. A participant explained that when moms had to miss class to attend to a child’s illness or serious meltdown “they were kicked out.”
Sheila said moms were heroic in the perseverance and creativity they brought to their advocacy despite numerous barriers.
Many were unable to fill out forms or advocate effectively at school meetings because they didn't speak English well enough, and many didn’t have Internet access.
Charmaine noted that “the world wants us to keep caregiving private because they don’t want to be accountable for it. Caregiving needs to be recognized as paid work. We need policy reform to support women engaged in caregiving.”
In pointing to services that make their lives easier, mothers said their best experiences happened when information and services were coordinated and available under the same roof.
The research is led by York University researcher Nazilla Khanlou. The Mothers Speak Up! event was sponsored by the Canadian Institutes of Health Research Institute of Gender and Health. A full report with references will be distributed this summer. To receive a copy, e-mail owhchair@yorku.ca with "Mothers Project Report" as the subject.
By Megan Jones
Denise Clayton and her family are too familiar with hospitals: in fact, they’ve spent nine of the past 11 Christmases in one.
Denise’s middle daughter Stephanie (photo right) was born with omphalocele, a condition that causes abdominal organs to grow outside the body. Although a string of operations has long since put everything back in place, the 11-year-old has spent most of her life hospitalized.
Today Stephanie lives with intestinal failure and experiences debilitating chronic pain, which often becomes so intense that it causes her to yell and scream uncontrollably. The pain comes quickly, and with little warning: one minute Stephanie might be running and playing. The next, she’s doubled over.
The uncertainty caused by the slew of surgeries, constant hospital stays and sudden, crushing pain has been undeniably stressful for Stephanie. But, Denise points out, it has also taken its toll on a less-discussed set of family members: her other two daughters.
Sydney, 13 (centre), and Danielle, 9 (left), have learned from an early age how to care for their sister—and for themselves. Denise’s husband, Greg, often travels outside of the province for work. So when their mother has to unexpectedly rush Stephanie to the hospital, her other two children are left to take care of themselves.
“They never know when they come home if there’s going to be somebody there,” Denise says. “They don’t know who’s going to get them dinner; they don’t know who’s going to help them with their homework.”
For years, Denise’s family coped without outside support for Sydney and Danielle. Although Denise looked for sibling support, nearly all the respite and therapy services she found were designed for parents, or for the children living with an illness or disability themselves.
Then, finally, after almost a decade of searching, Denise found the Young Carers Program.
Young Carers, which launched in early 2011, offers support to children under 18 who care for family members with a disability, addiction or chronic illness. While Young Carers offers programs specifically for siblings through a program called “Sibs,” not all clients are responsible for aiding their brothers and sisters. Some help sick parents or grandparents instead.
The service is run and funded by Hospice Toronto, and offers weekly programs, drop-in services, seasonal day camps, and monthly group excursions to places like theme parks and movie theatres. It also acts as a liaison between families and schools, stepping in when children can’t attend classes or complete assignments, and helping schools adapt to fit families’ needs.
According to Larisa MacSween, the program’s manager, too often young carers’ needs are eclipsed by those of their sibling or relative with special needs. While carers may be stressed and anxious, many feel too guilty or embarrassed to ask for support when a brother, sister or parent requires extra care. Young carers also seldom get the chance to “just be kids,” as their responsibilities and parents’ commitments leave little or no time for extracurricular activities or play dates with friends.
But at Young Carers, programming blends fun activities with discussion: the idea is to allow kids a safe space and time to relax, while working in serious talks about how to better cope with stress, or how to balance their own emotional needs with those of their family members.
Larisa says one of the most important things the program does is show kids that they’re not alone. “When children find they’re connected to someone else who’s been through the same experience, that completely boosts their self-image and their self-esteem,” she says.
“Having an outlet to think about their own needs, and learning to express them, that also really gives them a big boost.”
This has certainly been the case for Denise’s daughters. She says the program has given them a sense of community and belonging. “[Young Carers] is making my kids feel like they are being heard, they are understood, they are not alone and they have a place to go,” she says.
Currently, the program supports about 100 registered children. But the idea of a young carer is still relatively new in North America. Larisa says that the importance of supporting young carers has only started to be afforded attention in the last year or so in Canada. As a result, few comparable programs exist. And with an estimated 108,000 young carers Canada-wide, many kids still go without help.
Denise believes this needs to change. She says the support Young Carers offers has helped her daughters tremendously.
“With Sydney I notice that when she goes to Young Carers, she comes home and she’s not as anxious as she typically is,” Denise says.
“They both seem to be more tolerant. Tolerant to their sister’s screaming, or not being able to do something that day, like go out and ride their bikes. After attending the program they’re more understanding.”
Recognizing that not all parents will have access to support programs, Larisa says that parents can do small things to help siblings at home. She stresses that communication is key, and suggests parents keep children up to date about the health of their brother or sister, in order to ease anxiety. She also says parents should encourage kids to speak about their feelings, and share their stresses and fears.
Most importantly, Larisa says, young carers should be commended for their work, and validated for the help they provide their families.
“When children hear ‘Hey, you’re really doing a great job,’ that alone can show them how much they are valued,” she says.
Former Canadian Olympian Silken Laumann spoke movingly last night about stepparenting her daughter Kilee, 17, who has severe autism, at a BLOOM speaker event.
Silken was candid about the challenges the family has faced managing Kilee's meltdowns, which can cause her to lash out at others. She talked about losing caregivers who were injured by Kilee and said the family is fortunate to be able to afford both a worker for Kilee, and a person who acts as a bodyguard for the worker.
She questioned how parents who don't have this kind of support survive.
An investigation by the Ontario Ombudsman into over 700 complaints from parents of adult children with developmental disabilities who've been brought to their knees providing round-the-clock care to their kids suggests they don't.
This morning on CBC radio Ombudsman André Marin compared the situation of parents caring for adult children without adequate support to a breaking dam "holding back a rush of water. It can't hold the water."
He referred to a staggering number of parents in despair.
One of these is Amanda Telford, an Ottawa mother and social worker who dropped her 19-year-old son Phillip with severe autism off at a government office two days ago because she and her husband couldn't keep him safe.
"My husband and I are absolutely exhausted and medically unwell," she said, noting that her son functioned at an 18-month-old level, wandered away from the house and required 24-hour supervision. "I am not able to do this anymore."
Ombudsman Marin shared stories of parents who couldn't manage their adult children's complex needs, which sometimes included violent outbursts, on a 24-7 basis. He mentioned a mother who had locked herself in the basement and called 911 because her son was violent. She was told to call the police and he would be taken to jail, or to take him to the hospital. There were no long-term solutions offered.
Marin said many adults with developmental disabilities are living in nursing homes, psychiatric facililties and jail because there aren't appropriate living options for them in the community.
This afternoon Ontario's Liberal government tables its first budget under the leadership of Kathleen Wynne.
Of interest will be whether the Ontario Disability Support Program (ODSP)funding has been cut, based on recommendations from a commission tasked with overhauling social assistance.
According to this article by Carol Goar in the Toronto Star, "Under the new system, there would be no distinction between disability support recipients and general welfare recipients. Under the current system, an individual receiving disability support gets $1,075 a month; an individual on general welfare gets $606 a month."
I was astounded that the Toronto Star was our only major newspaper covering this proposed change.
The ODSP is for people with severe physical or mental disabilities who are unable to work and require daily care. It's for families like the Telfords.
I messaged Carol Goar this morning to ask whether she thought the government would move on this cut. "I believe the premier has realized there’s too much opposition to any change in ODSP benefits to proceed," Goar said. "But it would be best to wait six hours and see what the Liberals actually do."
Doesn't your head spin sometimes, seeing the connections between these stories?
Over 700 families are part of the Ombudsman's investigation and Marin suggests that's just the tip of the iceberg.
So how does it compute that we need to reduce funding support to families like these?
By Megan Jones
Young men with Duchenne muscular dystrophy do not identify themselves as being “disabled” despite the fact that most use wheelchairs, according to a Holland Bloorview study that tracked their move into adulthood.
For two weeks, 11 youth aged 16 to 27 were given cameras and asked to create photo and audio diaries about how they felt about becoming men. They were then interviewed by researchers.
Participants consistently emphasized that they weren't “disabled,” but were “normal” and “a typical guy,” the researchers said. For example: “I have a condition, like cancer. I don’t have a disability.” And “I try to live my life as a normal.” One respondent described a disability as caused by “something a person does,” while a condition like Duchenne’s was “not your fault.”
The researchers coined the term “narratives of non-difference” to describe the ways in which the young men tried to minimize or distance themselves from a disability identity.
They listed school achievements and plans to find paid work and live independently as indicators that they were living "just like everyone else."
They reported that they didn't like to think about changes in their health over time (the muscle weakness caused by Duchenne's eventually affects the heart and breathing and is fatal by age 30 to 40). Talk about the progressive nature of Duchenne’s was avoided.
“Nothing stops me and gets in the way of my life,” one 16-year-old youth said. “I just stay positive and don’t worry about the future.” Instead of thinking about the long-term, the young men said they focused on achieving regular milestones in the immediate future.
Lead investigator and Holland Bloorview senior scientist Barbara Gibson says that while it’s important to stay positive, the tendency of the young men to resist a disability identity could have negative impacts.
Aligning themselves rigidly with non-disabled peers may mean they don’t think about and plan for a future where their medical needs become more complicated, Barbara says. For example, youth with Duchenne's need to decide whether or not they'll use a ventilator as they age, and this needs to be planned in advance.
Study participants equated moving out on your own with adulthood, but this may not be workable for some people with Duchenne's, Barbara says.
It's not surprising that these men have picked up on North American values about what constitutes "success" as an adult: leaving the nest and collecting a pay cheque.
However, the study suggests these dominant social values may be reinforced inadvertently by rehab professionals who support youth with disabilities as they transition to adulthood.
Barbara says many transition programs offer a narrow definition of what adult success looks like and take a black and white "checklist" approach. Tip sheets that emphasize independence and financial self-sufficiency can be problematic for youth with Duchenne’s whose health deteriorates in early adulthood.
"The message of independence in these transitions documents comes out loud and clear," she says. "Independence is presumed good and dependence is bad."
Barbara says clinicians, parents and teachers “need to create space for alternative, but equally valuable, life trajectories."
She suggests transitions programs need to encourage clients to set goals that include a variety of lifestyles and timespans. For example, perhaps a good life for some young men with Duchenne's means continuing university studies without plans to work. Or maybe the goal for some clients is to enjoy passions like wheelchair hockey. Goals that involve living well in the present are just as important as those in the future.
"Professionals need to be aware of how narrow, dominant views of what a 'normal' life looks like can affect their clients," Barbara says. Rehab clinics are a starting place for broadening the discussion of what a satisfying adult life looks like. Peer-to-peer programs could also be a good place for young people to talk about their challenges and successes.
"Right now there are almost no role models for thinking about living with Duchenne's as an adult in a different way," she says "The dominant story is so dominant that you don't hear about alternatives.
“Through advocacy groups, people with other kinds of disabilities have begun to talk about disability in a different way. It isn't about constantly trying to deny the disability or live your life normally. But about living a full life with disabilities, and options for how that could look."
Barbara says that because the symptoms of Duchenne’s appear after a child has had a typically mobile early childhood, the young men see themselves differently from children who are born with disabilities. “They identify more with sick people than with people with disabilities.”
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