Sunday, 18 February 2018

A4A Project Update: Challenging the ABA Monopoly in Ontario

I haven't been blogging much because I've been engaged in advocacy projects and activism with A4A.

There are a number of projects going on: this one is time-sensitive as the Provincial Election approaches in June. Personally, I hope that a newly-formed government will scrap the program, which is regressive, damaging and a waste of tax dollars.

Here is the paper we wrote, outlining how ABA has gotten so much control in Ontario policymaking; a blueprint of what is happening in various jurisdictions -- it must be stopped and progressive policy must prevail!!

Wasted Opportunity, Wasted Money: the Ontario Autism Program

I


n 2017, the Ontario Association for Behaviour Analysis hired Pathway Group to lobby eight Ministries at Queen’s Park. Today, under the new $500 million government autism plan (Ontario Autism Program), only ABA is allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA certified.

Non-ABA stakeholders, especially #actuallyautistic voices, were consistently shut out of the OAP consultation process. Shockingly, the half-billion dollar plan was developed without any input from the autistic community.

The OAP does not serve the needs of the community it claims to serve. With the entire budget earmarked for ABA and none for useful services, it should immediately be scrapped by the new government. This wholesale conversion towards one preferred provider is a waste of money and opportunity. ABA is based on neither science nor evidence: it is an outmoded, cruel form of behaviourism that autistics, researchers and many families oppose.

Recommendations
  1. The OAP should be replaced by a new, leaner and more effective plan reflecting science and the input of the population it is supposed to serve – autistic Ontarians.
  2. The Ministry of Children and Youth Services should no longer be the authority over autism services by having control of this portfolio. Services to autistic adults have been systematically denied as a result of this misdirected authority.
  3. The new government must take responsibility and consult with autistic self-advocates such as Autistics for Autistics (A4A)and Canadian Autistics United, as well as experts in disability services and accommodations.

What went wrong
How did the government get it so wrong? One clue can be found in a bureaucratic misstep: placing management of services to autistics under the authority of the Ministry of Child and Youth Services. There are tens of thousands of autistic adults in Ontario, yet the current OAP contains not one sentence about the needs of autistic adults.

Another clue is the relationship between ABA professional organizations and the advising process within the government. Several members of the Advisory Committee for the current OAP are practitioners/trainers in ABA. Despite repeated efforts from autistics, disability advocates and non-ABA service providers to be meaningfully included in consultation, these stakeholder groups were excluded from the Liberals’ OAP advisory process.

These issues came up when Ontario Child and Youth Services Minister Coteau held two Tele-Town Halls about the Ontario Autism Program (OAP) earlier this month. Concerned parents asked the Minister why autistic self-advocates were not consulted during the development of the program and why ABA has supplanted all previous existing services available to autistic children. Minister Coteau did not answer these questions directly, but he reiterated that the OAP budget will be solely earmarked for ABA-brand providers and training programs.

Today, we have one industry dominating the entire autistic service system in our province, with useful programs and services having been stripped away in the process. The half-billion dollar question is: why?

How ABA establishes market dominance
Like other conditions and disabilities, the reality of being autistic in Ontario is best understood by consulting with the community: autistic children and adults. Yet when the Liberals sought to develop a program to serve autistics, they rebuffed our efforts to connect. 

Other stakeholders report the same experience, including a coalition of non-ABA providers of services and accommodations (who as government contractors are not allowed to make public statements).

This situation is not unique to Ontario. Globally, some industries have been accused of attempting to squeeze out their competition, using a 3-pronged approach:
  1. Positioning themselves as the “only experts” on autism;
  2. Making unscientific claims that appeal to emotions; and
  3. Requiring other professionals to be absorbed into their system in order to receive funding.
Let’s look at the three methods below.

1. The “only experts” strategy

Sometimes providers will position themselves as the only experts on autism and state that ABA is “the only evidence-based practice”. Through this strategy, governments may be encouraged to stonewall other stakeholders…legitimate voices suddenly portrayed as illegitimate in what looks like a sales pitch.

The claim that ABA-certified professionals are “the only experts” has the potential to undermine confidence in their service competitors and give ABA a greater market share. There isn’t validity to the “only evidenced-based service” soundbyte — but repeated often enough, people begin to believe it. To this end, we can’t help but see it as marketing in its basest form.

ABA’s founder, O. Ivor Lovaas, was also the founder of a brutal “gay conversion” program, which claimed to stop young people from being gay, now illegal for children under 18 in Ontario because it violates human rights. Far from being experts on autism, some providers fundamentally misunderstand autism and basic neurology, with practices that attempt to “convert” autistics to appear neurotypical at any cost. Like the gay conversion therapy designed by the founder of ABA, these practices run counter to Canadian values and human rights.

As Forbes science writer Emily Wilmingham points out: “With ABA, the burden is on the child to somehow understand and modify behavior in situations that they often aren’t even old enough to intellectualize,” With other approaches, “–as autistic people have long argued should be the case–the onus is on the [parents and teachers] to work harder to understand and communicate with their child, rather than to try to ‘fix’ them.”

2. Unscientific claims
One of the core claims of the ABA marketing blitz is that it is “the only evidence-based” approach to autism. In reality, the research into ABA is very much under scrutiny and falling out of favour in many jurisdictions. As Michelle Dawson writes: “‘Scientifically proven’ and ‘medically necessary’ are terms that encompass the assumption that the scientific and medical ethics have been accounted for. In autism, these terms are applied to a treatment whose ethics remain unexamined.”

ABA research has been historically plagued by poor methodology. As neuroscientist Laurent Montrant of the University of Montreal writes in his study, its “efficacy has been called into question in the last decade due to poor-quality data, small effects, low cost-efficiency, and the evolution of ethical and societal standards.” (emphasis added). This is due in part to newer research in the neuroscience field, knowledge that demonstrates a fundamental incompatibility of the Behaviourist approach to autistic lives and realities.

Montrant notes: “There is currently no scientific, ethical, or societal justification” for Behaviourist early interventions.

Non-Behaviourist approaches have been studied and these rigorous studies demonstrate that autism acceptance (the opposite of ABA) leads to the best outcomes for autistics. In fact, there is a broad range of new research into better ways than ABA. It does not appear that this research was consulted when developing the OAP.

While behaviourists tend to focus on autism as a set of behaviours to modify, neurology tells a different story and the medical community concurs that autism is biologically wired. ABA’s approach to neurodiversity simply does not reflect what we know about the human brain; for example, much of the literature of ABA portrays autistics as flawed versions of normal — then it offers a supposed fix. Parents and governments may take the bait because ABA proponents play on emotions (especially fear) to sell their product.

ABA providers may promise to make an autistic child “nearly indistinguishable” from peers. They may tell parents that there is only a tiny window of time in a child’s life to intervene, and that only intensive/expensive Behaviourism will help their child. Finally, they may use the tired, discriminatory trope of “pay now or pay later” to suggest that children who undergo ABA have better outcomes. There is no evidence to support those claims.

3. Absorbing other professionals
Under the new OAP, non-ABA providers will be required to engage in expensive professional development programs to become BCBA-certified therapists — or risk losing their funding. Personal support workers who had integrated successfully into schools with their students will be asked to leave their positions if they don’t become ABA therapists.Included in the mandate are OTs, PTs, and Speech Language Pathologists, none of whom have a need (or a desire) to be trained in an antiquated form of Behaviourism.

Under the OAP, thousands of Ontario professionals who are accredited and respected in their fields have been knocked down the rungs as “illegitimate” if they do not have an expensive BCBA certification. Requiring BCBA certification does not help autistic people: it only brings business to certifying bodies and attempts to position the ABA brand as the perceived gold standard in autism services.

Who profits or benefits from unnecessary accreditation? How could provincial money be better appropriated? And why did our government gamble on a single approach that autistic people don’t want? Who is the winner — and who are the losers — in this gamble?

What can be done

The new Government needs to put the brakes on the OAP now. Advocates are mobilizing across interest-groups to say no to the program. The OAP represents wasted money and opportunities — and our coalitions, united, will not stand for it.

We are personally and intimately aware of the pain, anxiety and PTSD that autistic children and adults suffer due to Behaviourist therapies. We oppose ABA in any form. As self-advocates, we support useful supports, services, programs and accommodations — not so-called cures or therapies.
We are far from alone in this perspective. Autistic self-advocates and allies who support progressive approaches are an interest group that is growing every day.

It is misguided to place “autism services” under the authority of the Child and Youth Ministry, when tens of thousands of autistic young adults and adults in Ontario are also integral to any true service model. Other groups such as racialized and LGBT communities, as well as many disabled communities, have services by and for all ages, shapes, sizes, and geographic locations led by their own people. So should we.

Autistics are crucial to developing effective policy that responds to needs and respects human rights.
Our province deserves better than the current OAC. Together with our allies in the community and government, we will change the culture of autism policy at Queen’s Park to one that is fair, humane and equitable — reflecting the needs, the voice and the vision of our community.

If you are interested in learning more, please read more About us. If you would like to join our efforts, find us on Facebook or Contact us.

A4A Project Update: Taking Action on Phony Autism "Cures" in Ontario

I haven't been blogging much lately because I've been mostly working on some advocacy and activist projects.

Here is one that's close to my heart, with A4A Ontario. We continue to write reports on phony autism "cures" being promoted in Ontario and to advocate for better health and safety protections for children. We share these reports with policymakers and are making some in-roads. We are heartened to see the amazing progress by Autistic Inclusive Meets and Emma Dalmayne in the UK, where it looks like protective legislation will soon be passed.

Here is our blog post on this issue:

Autism Cure Scams in Ontario: A Report and Call to Action




"All across the province of Ontario, businesses are making money off of autism “cures” that are harmful to children —with little to no regulation by our government.

We have identified 14 Ontario clinics promising to cure autism or its “symptoms” through a range of protocols including chelation; injections; off-label prescription drugs such as long-term antibiotics; chemical castration; herbal and vitamin supplements; hyperbaric oxygen tanks; severely restrictive diets; and other regimes that are sometimes called “biomedical treatment.” There is no medical basis for any of these programs. Further, they are dangerous and potentially deadly to autistic children.

We are shocked that in Ontario there are few regulatory measures that protect children against invasive autism “cures” —and that it is nearly impossible even to censure MDs who prescribe major drugs for off-label use related to autism. 

Further, while children are not able to provide informed consent for these treatments, the mainstream autism organizations find it acceptable to list them on their websites —and parents continue to patronize these companies.

Meanwhile, children have died, been injured and suffer lifelong consequences from the painful and sometimes deadly regimes of “cure” culture.  The Ontario government and other regulating bodies need to take action on this crisis now.

What is an “autism cure” scam? How does it work in Ontario?

In a typical cure scam, a doctor or a naturopath promises to “cure” or “recover” an autistic child, drawing heavily on pseudoscience to mislead the parents into the scam. The scams feed into myths about autism, such as the fear that young children will fail without radical “early intervention”; that any outcome is better than autism; and that autistics are poisoned and diseased. None of these myths have any validity or basis in science.

Some Ontario naturopaths contract with MDs to write off-label prescriptions; other times, licensed physicians work directly at naturopathic clinics administering drugs and “treatments”. Prescriptions are given for the use of antivirals, antifungals, long-term antibiotics, SSRIs and other medications as part of an autism “cure” plan. The naturopath or MD may also swap out the autism diagnosis for another (such as PANDAS Syndrome or even Lyme disease) to justify prescription use.

There is at least one MD in Ontario doing chelation as an autism “cure”. Chelation is the process of using a chemical to strip metal from the blood, a risky process that is normally reserved for victims of industrial accidents. But as Emily Wilmingham writes, some companies “promote chelation as an autism treatment. It is not one. One of the metals in our bodies that we need to live is calcium–for example, it keeps our hearts beating–and at least one autistic child has died during a chelation “treatment” because it wiped the child’s blood of this life-supporting ion.”

Naturopaths also prescribe “cures” such as MMS, an industrial bleach, claiming that feeding it to children can “clean their gut”. Another popular treatment is massive doses of B12, delivered via injection by the parents each morning, combined with a host of supplements and dietary restrictions that make up the so-called Defeat Autism Now (DAN!) Protocol.

A recently proposed “autism centre” in Hamilton touting the use of “detoxification methods”, restrictive diets and in-patient programs for children has drawn concern from local residents as well as the government of Ontario. We share those concerns and hope the government will take swift action to investigate.

How do “autism cures” harm children?
Autism cure regimes, supplements and restrictive diets have been shown to cause significant harm to children, both physically and emotionally. Aside from the obvious risk of any “detoxication” protocol such as MMS and chelation, the other “cures” exist on a continuum of harm.

For example, many restrictive diets such as the DAN! diet specify minimal starches/carbohydrates, depriving children of essential calories. Vitamins and mineral supplements consumed over the recommended daily allowance are known to cause toxicity. Probiotics and other supplements carry their own serious health risks for children. And all supplements, as unregulated products in Canada, have been found to be routinely mislabeled or later even removed from stores for containing unlabeled and dangerous substances.

Those are just the physical consequences. Now consider a child’s experience of being given a handful of horse pills and injected with vitamins by her family every morning because they have been told that she is broken and sick (when in fact she is perfectly healthy). This is a trauma for any child, with lifelong consequences.

Putting children on autism “cure” diets can be a precursor to eating disorders such as anorexia and orthorexia. With the diet restrictions promoted at home and enforced by their family’s health providers and even at school, children have no escape from the eating disorder. It leads to social isolation (such as the birthday party where a child is forbidden from eating cake because it will “worsen their autism”). Restrictive diets also send a message to the child that being autistic (e.g., being who they are) is wrong.

As Bethany Sheldahl wrote in her essay How Diets to Cure Autism Gave Me an Eating Disorder and Internalized Ableism: “It took me years to stop pathologizing myself.”

Through restrictive diet and vitamin regimes, the child’s bodily autonomy is violated and their health compromised by the people they are supposed to trust the most — their parents. Adding to the confusion, the child’s questions about these protocols are met with gaslighting platitudes: “It’s for your own good.” Clearly, it is not.

Who is accountable?

Our government is entrusted with protecting those most vulnerable. In this case, many of the most vulnerable are children, victims of their parents’ horribly bad judgement. Thus, we call on Health Canada to continue their research into better labeling of health claims on supplements and its other regulatory practices. As well, an official statement from Health Canada condemning pseudoscience would be useful towards educating parents and the broader public about autism “cure” scams.

We also call on the Ontario government to develop a strategy for dealing with this problem. The province’s current system for reporting and acting on these scams is inconsistent and vague. As long as there appears to be so little regulatory power over naturopaths or their products in our province, they will continue to prescribe “cures”. We would also like to see the Ontario government develop a clearer path for reporting pseudoscience to regulators and post it on their website.

We ask that the College of Physicians and Surgeons (the governing body of MDs in Ontario) be proactive in investigating medical fraud, misuse of prescription medications and all autism “cure” or “DAN!” programs run by Ontario physicians.

Parent-led organizations in Ontario must end their code of silence about pseudoscience. For example, the websites of both Autism Canada and Autism $peaks Canada have extensive lists promoting how-to books and programs for restrictive diets and cure protocols. No amount of fine-print disclaimers can erase the fact that posting this information online is a form of endorsement.

Parents also are accountable for their choices. A reminder: there are many parents who say no to cure culture. It is not a function of the parenting impulse to engage in these treatments. Rather, it is a symptom of a broader social problem: the pathologization of autism as an “epidemic” to “cure”.
Silence is not an option. We urge allies to speak out if they hear about bogus cures and pseudoscience from family or friends.

If you are not part of the solution, you are a part of the problem.

Conclusion
There is no “cure” for autism and there never will be — nor should there be any effort made towards finding one. Scientifically speaking, autism is not a disease, any more than being left-handed is a disease. Historically speaking, autistic people have always been a rich and diverse part of the human fabric. The reason for increased autism diagnosis is due to a radical shift in diagnostic criteria, not an imagined “epidemic”. Efforts to cure an autistic person are not only pointless, they are painful and often dangerous to the safety and well-being of all autistics.

Cure culture, whether in the form of pills, “treatments” or “behaviour therapy” has no place in an inclusive society. In addition to their impact on the direct victims, cure schemes also have a ripple effect in diminished access to services and human rights for all of us. When parents talk about “curing” an “epidemic,” autistics are seen as a problem to eradicate and a class to exclude— rather than as a part of society. We continue to face discrimination, exclusion and abuse, all made worse by cure culture.

Autistic lives and wellness matter, at every age. So does the right to bodily autonomy. A4A will continue to advocate until regulators and lawmakers in Ontario establish effective processes to end autism “cure” scams. Because we need more than just education: we need enforcement.







Toronto Event, March 1: International Day of Mourning for Disabled People Murdered by their Caregivers

I haven't posted in a while bc I've been working on some advocacy and activist projects with A4A. One event that we have coming up is the International Day of Mourning for Disabled People Murdered by their Caregivers.

Here is the info from our Press Release:

On March 1, 2018, A4A will be hosting Toronto’s Disability Day of Mourning Vigil.

Date: March 1, 2018
Time: 3:00pm-5:00 pm
Location: Ryerson Campus, Oakham House (1st floor)
63 Gould Street, Toronto

Background: The Disability Day of Mourning is in honour of disabled people who were murdered by their parents or caregivers. It was founded in 2012 by Zoe Gross of the Autistic Self Advocacy Network and now happens in cities and towns across the world. This is the first year a vigil will be held in Toronto.

About the event: Following a brief introduction, members will be reading the names of victims, followed by a moment of silence. Information about the issues and how to get involved will also be available onsite.

Why it’s so important: Our lives have as much value as any other. Yet the murderers of autistic and/or disabled people are routinely given lighter sentences by the criminal justice system. Lighter sentences not only dishonour the dead, they also encourage more abuse and more murders. In fact, research shows that lighter sentences lead to copycat crimes.

Media portrayals of these murders as “mercy killings” or reports that empathize with the murderer or blame autism for their acts create a chilling environment where violence is seen as justified. Parents and other caregivers often justify their abuse by blaming autism or another disability: blaming the victim rather than the perpetrator.

There is only one victim in a filicide: the child. All murderers should be held equally accountable for their actions.

On March 1, we honour the memory of our disabled and autistic family who were murdered. They should be here with us and we mourn them deeply. As we grieve, we also fight for judicial reform, true equality for the disabled and justice, in their name.

If you would like to volunteer at the event or want more information/seek an interview, please contact us.










Friday, 8 December 2017

The Taxonomy of Plants


Grandpa
If you wanted to talk to my grandpa, plant taxonomy was a good opener. He would take us for long walks in the forests of North Jersey. Be quiet now, don’t scare the wildlife.

“What kind of plant is that, Grandpa?” I would whisper. I never remembered the answer. But I liked to hear him talk to me.

Every July, us kids would stay at their house near the shore. Grandpa, who had been an inventor at Bell labs, kept the tidal charts taped to the side of the refrigerator so he knew when to fish, when to swim and when —at 4 in the morning— to take the six of us racing down the pebbly sidewalks to collect shells and walk the puddled moonscape of a Jersey low tide. 

Back home in his garage, he had set up aluminum tables with giant volumes for us to pore over: collected stamps from around the world, each crispy page a pageant of colour. On the other table, weighty blue tomes that told the story of money: year-by-year pennies, nickels, dimes. Silver dollars. $2 bills. Worn ancient coins he called “worthless” that I would shift and pour from hand to hand. “Where is this one from, Grandpa?” He would talk to me.

At 10:00am each day, the phone would ring. Grandpa’s chess partner calling in his move. Like two men in distant mirrors each would make a move on his own chess set, then bid goodbye and hang up. Grandma would go and cook. Grandpa would walk to the piano and play old standards for hours then. Not much in the mood for chit chat.

Upstairs at night on steel framed beds, we would listen to the roll of thunder and the clatter of rain as storms rolled through. Grandma and Grandpa, meanwhile, had retreated to their side of the hall. The storms, like the seas, turned us all into wilder children but no one ever came to say calm down or comfort us. My brother told me the thunder and lightening was “God bowling.” I pulled the damp sheets tight, fell asleep.

Grandpa never missed the name of a plant—ever. My brothers would marvel at his memory, as he recounted the history of plants, places, weather patterns, the old hurricanes, matters numismatic, philatalogical. At the end of July, we would bid them goodbye with quick hugs and pile into the station wagon back to the midwest. Our visits to Jersey were at once exotic and a kind of homecoming. These were the people my father had left behind.

Dad
When he was a young man, my father went to lunch with his uncle in the city. There, his uncle offered him a job in the family business. When my dad hesitated, his uncle shook his head and frowned. “You don’t want to turn out like your father,” he said.

My father left that fateful lunch and decided to move his young family to the countryside of Wisconsin. Took us all fishing, camping, hiking off to wander the hills like a troupe of semi-feral von Trapps, freed from the rigid city life of family business, barefoot and happy living in a house on “some land” with horseless stables and a million grasshoppers flicking our legs as we ran through summer weeds. On hot days we would line up in the garden to plant seeds in neat rows and Dad would talk to us about the life cycle of animals and fish, of plants and pollination. As with my grandfather, the outdoors was where I knew my father best.

My dad’s garage was different than Grandpa’s. He kept a couple vintage cars in it. My favourite one had a canvas roof and smelled beautifully musty. They had brand names and a lot of information attached to them which Dad told us but I forget. What I remember is the smell of sitting in that car, especially after a rain.

Sometimes Dad would go out to the garage and sit, too. In the years when he was unemployed, a phantom anger would overtake him -usually at dinnertime—and he would shout, throw things across the room, break chairs, lose all control in the house with us, then retreat to the garage and the car. Everyone would scatter from the dinner table but me. I could hear him out there wailing and crying through the screendoor. Then morning would come with an apology.

Script for a parent apology. 1. Listen. 2. Say “It’s ok, I understand.” 3. Stay still: here comes the hug.

David

My brother Mike was an engineer like Grandpa. He got married first, had kids first. His son, David, was diagnosed as autistic as a young child. Intensive therapy was prescribed and they said yes.

When my nephew was little, he used to like to run and throw himself onto me. I knew why; I remembered doing that too. But times had changed and with an officially “autistic” child present, we were all quickly versed in a new and uncomfortable way of responding. It was a whole new language of “Hands quiet.” “No repeats.”

David has loved the moon from the time he was very small. He can tell you about the cycles of the moon and when each kind of special moon is coming. I like to go outside away from the din of our family gatherings and look up with him. In the dark and the quiet he can ask me questions as many times as he wants; he can flap. I try to think of things that will bring on a flap. I try to stay connected in the dark under the moon.

Us
I ran too, like my Dad. We moved ourselves to Canada. My son was diagnosed autistic as a young child. Intensive therapy was prescribed and we said no. We chose to unschool and now travel with whatever time and money we have. Our most recent trip is to the Bay of Fundy, which has the largest tides in the world.

The tide schedule sits on the hotel dresser. I check and re-check it; then the alarm rings. We all scamper about in the dark, grabbing cameras, throwing on yesterday’s wet clothes, forgetting shoes, race-walking down to the shores. Under the light of the stars, it all looks like a stellar landscape with giant, exposed boulders covered in prickly crustaceans, tiny sleeping barnacles hanging off heavy curtains of seaweed, waiting to breathe when the waters rise again. I walk along cold spring water beds, searching the sand for ancient volcanic rock, petrified sea mammals and any kind of creature to touch and hold and share.

Kyle is up ahead of me, singing, running, jumping. He grabs a stick and draws into the wet sand: a giant map of Toronto’s subway system. “Next station is Spadina. Change here for Line Two!” The sun is a gold ball rising above us. Behind us lie the dark tunnels of St. Martins.

In a few hours’ time, the tidal boar will rush through, filling up Fundy. It is a sight to behold when that brown wave comes racing down the riverbed. After the tidal bore, the river settles into a lazy flow that is at once deep brown and yet silvery-reflective. The reflections are more focused than the sky and clouds above: the water’s surface like God’s finely tuned camera lens. We sit on the mucky shores and just look.

Back at the hotel now, the day has just begun but we are wiped out. Not much in the mood for chit chat. Kyle flips out the camera and looks at the photos we shot. Ron makes some coffee and checks his iPhone. I sit down in the quiet and write.














Sunday, 24 September 2017

Water and Light: On Parenting in the Age of Trump

Every day these days, we go to the beach. I feel like I’m the best mom there.

Since November 8th when my home country was taken by fascists, I haven’t been doing too well. I mean, who has? Each morning I wake up filled with anger and dread: emotions I need to put somewhere so I can be a good mum. I live in Canada now, which adds a layer of alienation mixed with privilege (I make calls to “my” Senator in Wisconsin to save health care… but no one is trying to take mine away.) I’m not in America anymore, yet a part of me is.

My son is seven years old. Some nights he wakes up to my husband and I yelling about politics. (We're not arguing; the topic just makes us yell). He wants us to stop; it frightens him. It’s hard to stop. But I don’t want him to be scared... like I am. So we're cautious with information. Even the newspaper we read together is carefully curated; flipping past the nuclear threat on page 2 to the story of the Brampton woman with 30 hummingbirds in her yard. I remind myself: it's the grownups' job to fix the world. Clean up your own mess please.

It takes work to stay calm. The news of the day is a manic teletype machine in our heads as we prepare dinner, talk about the small wonders of our day, tell bedtime stories. On too many nights after Kyle falls asleep, we flip out our phones in the cozy warmth of the family bed. We need to know: what new shitstorm of a bullshit horror show has transpired in America since we last checked? What can we do to help? Are the events of today the defining moment when all that hell will end? This is it, we say to each other. This is finally the end of it. But it never is.

Go to sleep. Wake up. Repeat.

Today our friend took Kyle paddle-boarding on Lake Ontario. We got there early when the sun was just a pulsing yellow ball on the horizon. They paddled off to find a new swimming cove. Soon the guys were just a black dot, heading around rocks in the distance. I dove into the freezing water and swam in dappled light. A year ago, this swim would have been all water and light to me. It isn’t anymore. The teletype hums on.

Still, it was a beautiful sunrise. I recall that I raved about it when they came back. Then we stayed at the beach a long time. It’s always hard to leave. Kyle had so much fun that he didn’t want to take his swimsuit off all day. He marched down the grocery aisles shirtless in his red trunks, laying claim to a boyhood summer as the days grow shorter, the evenings cooler. He walked home barefoot, defiant and probably a bit chilly.

“It’s still summer, right Mom?”

“For sure! It’s late-summer.”

We have all been hit with the trauma of American fascism. It has changed us inside. Like any grief, there is no going back to an easier time, let alone an easier mind. But our grief isn't a legacy to pass on to our children. Let them walk barefoot in the late summer when they can. In turn, they will take us to the water and light. Perhaps with the grace of our children in our hearts, we can work to repair this broken world. 

Wednesday, 20 September 2017

2017 Survey of Parents who Homeschool their Autistic Children

I recently surveyed 60 parents who are homeschooling their autistic/neurodivergent children. (For methodology, read here). I asked respondents why they homeschool; how they feel about homeschooling; what supports they use; how inclusive their homeschool community is; and what their communities can do to be inclusive of autistic homeschoolers.

I am publishing their responses without much additional analysis. They speak for themselves. (For more general analysis, please see my other post.) If you have questions or would like to be involved in further research, my contact info is at the end of this post.

Why homeschool?
Fifty percent of respondents were lifelong homeschoolers and 50 percent had tried formal school. Of the latter, the average age children left formal school was 7.

Study participants, by and large, did not view homeschooling as one of many options but rather as the only viable option for educating their autistic children. Parents cited bullying by students/teachers and their child being beaten up by other students. Neglect in the classroom was also described; one parent wrote “He was literally ‘spinning’ all day long in the back of his classroom.” Another stated: “My son has a brain injury which left him susceptible to anxiety, school was 100 percent dismissive and I was so disappointed in them.”

Several parents were told by school authorities that their children would be better off somewhere else. One parent recalled: “They had a mindset of my son not being able to do things and basically ignored him. He wasn't progressing in school and he kept getting sent home. Eventually, the school said he could only come an hour a day.” 

Parents reported a lack of needed supports and accommodations at school for their autistic children. This extended from classroom supports to the relationship between teacher/staff and child. Several expressed that the teachers did not understand or show empathy; one respondent characterized her daughter’s teacher as “emotionally abusive”. Describing a “lack of understanding and empathy” from a teacher, another parent wrote that the teacher wouldn’t acknowledge that her son was autistic, despite his diagnosis by a professional. Another noted that “the school refused to follow his IEP and doctor's orders.”

Other parents identified environmental factors in the school that prohibited their child from integrating or enjoying the school experience. One parent who wrote that her son has sensory issues, concluded that the district “could not provide the right environment,” and thus chose to homeschool. Negative school experiences could affect the whole family as well. One parent wrote: “We found [the school] held him back and created much sadness in our family.” Another wrote about the classroom that it was “too overwhelming. Too much anxiety, meltdowns. Teachers not handling things well. Too much stress all the way around.” 

“Stress” “anxiety” and “distress” were common words to describe the formal school experience and the reasons for leaving the formal school environment. Other words used were “disastrous,” “dreadful,” “trauma” and “a nightmare.”

“Everything relating to school felt like a struggle,” wrote one parent.

Families that had never enrolled their children in formal school gave several reasons why they did not enroll. Objection to mandatory ABA in schools was cited by three parents as a reason they homeschool. Another wrote that “the public special ed was all about compliance training and we can't afford private school.”

Other parents who never enrolled their children wrote that they were pleased with their child’s progress in early childhood and did not want to disrupt a successful path by introducing the unstable variable of public school. As one parent put it, “she was doing so well at home (we didn't do preschool) that we just decided to try it and see, and she thrived the first year so we decided to continue.”

Was it the right choice?
Respondents were asked to choose between three responses that best describe their homeschooling life: “I am glad we homeschool;” “I feel ambivalent;” or “I made the wrong choice”. 

90.24 percent of respondents chose “I am glad we homeschool”.

9.76 percent chose ”I feel ambivalent.”

0 percent chose “I made the wrong choice.” 

“I believe it will provide the best education,” wrote one respondent. “Best school option for my kids.”

Parents cited improvements in family environment, mood, academics, speech and OT. One parent wrote: “We’re much calmer. My son's speech has improved dramatically.” Another wrote, “Homeschooling has been not only hugely successful for my son with ASD, but just as much for my other children.” “My son is ecstatic,” wrote one mom, “he loves homeschooling.”

With regard to ambivalence, several parents mentioned stressful economic factors, with their income halving as one parent left the workforce to homeschool their children. “It impacted us hugely,” wrote one parent, “I had a well-paying job.” Another wrote: “Having children has changed things a lot, but the choice to homeschool, not so much. Actually, we have less money.” “It has been a very good balance for us,” stated another, “and well worth the financial sacrifice that homeschooling has been.”

Homeschooling, which takes a lot of energy for parents, can exacerbate conflicts in the home as well. One respondent wrote, without elaborating: “The kids are happier but my marriage ended.”

Others observed that their children had increased energy once leaving formal school and that the home environment improved. “Our family is a lot less anxious and we do more activities as a family,” wrote one respondent.“My son has resumed making academic progress.” One respondent wrote that her children have “less stress, more time to socialize and go out and do things. Previously they were too exhausted and stressed after school and [on] weekends from coping with school to do anything.” “

“Felt relieved at not having to deal with a school system notorious for not dealing well with ASD,” wrote one mom. “It has its difficulties, but I think it's less stressful overall.” Another parent described his child as “calmer, more understanding, [having] better communication. He understands it is okay to be himself.” Another reported: “We have less stress and more positive social interactions.” “We understand each other much better now,” wrote another.

Supports and therapies used
More than half of respondents (51 percent) use formal autism-related therapies or social groups. Four respondents specified their children were currently enrolled in occupational therapy; 3 in  speech therapy. Most others said their children saw a “therapist” without specifying which type. Several were involved with social groups for autistic youth, including one for trans autistic youth and another in a group designed for homeschool youth with learning disabilities.

Some respondents expressed frustration at a lack of social groups or other programming for autistic youth outside of a “therapy” context. One parent wrote, “I wish there were more autistic led social groups. Currently all social groups are NT-led with very archaic and flawed foundational tenets.”

When asked how they paid for therapies and supports, 68 percent of those using these services selected the option “Out of pocket”. Seventeen percent said that their therapy/supports were “government subsidized” and fifteen percent said it was “a combination of self-funded and government subsidized.” It requires further study to determine whether it is the type of therapy preferred, lack of access or other factors that account for so many homeschool parents having to pay out of pocket for their children’s supports.

Does the homeschool community accommodate autistic youth?
Respondents were asked whether their homeschool community was more accommodating than formal school, less accommodating or about the same.

60 percent or respondents selected “more accommodating than school.”

36 percent chose “about the same.”

4 per cent chose “less accommodating.”

“The homeschool community here has been very flexible and understanding,” wrote one parent. 
“The co-op we were part of included many autistic kids and were inclusive,” wrote another, “However, it could have offered some more stimulating classes for gifted kids.” 

Some parents identified the need for greater education and autism acceptance in their homeschool community.“I think [homeschool] parents could make more effort to teach their children how to accept differences in other children,” wrote one parent.  Another wrote: “Many homeschooling parents seem unwilling to encourage their children to be friends with atypical children.”

“We have been in one group for eight years now and nobody wants to understand why we can't do large group outings,” wrote a parent. Others responded that homeschool co-op leaders need to better gear programs to individuals. “Just like an IEP, find out what a child needs individually to be able to participate,” suggested one respondent.

Parents shared their ideas on how their homeschool community could be more accommodating. “Create small groups that meet frequently,” wrote one. “My son does better in smaller groups of people and with people he knows and trusts.” Another parent mentioned that some events require a drop-off, which was not feasible for their child.

Other ideas included quiet areas or sensory rooms in the homeschool co-op space and local adaptive classes, sports programs, social skills classes and job advocacy programs for autistic teens run by the broader community. 
One parent suggested more activities "at centers that are knowledgeable about different mental health issues.” Another wished there were “more fun programs that are geared towards autistic kids that are not done by an autism centre for therapy, but are just about having fun together.”

Challenges and rewards 
Parents wrote about the challenges and the rewards of homeschooling in their additional comments.

“Homeschooling special needs kids is so lonely sometimes,” wrote one parent. “There must be a better way to support parents.” Another parent wrote about social challenges: “With an only child it takes extra work. Other [homeschooled children] have a built-in social network with their siblings.”

One parent, who wrote that his daughter’s sensory needs were not met at school, wrote: “Home is the right environment and I'm glad she has the benefits of attending live classes with real teachers online, it's the best solution for her.”

Parents also reported that their children had less stress at home than they did when enrolled in formal school. “No more meltdowns all the time when not in school,” wrote one parent. 
Another stated: “Both my daughters (both autistic) have done wonderfully, and I definitely think homeschool has had a lot to do with that.”

Autistic homeschoolers are freer to follow their own academic curve without being measured against their peers in a grade/level system. One parent highlighted the advantage of this flexibility. “Homeschooling allows my son to explore his interests at his own level. He can be ahead in science and math but still work at his own pace in language arts. It also allows us to keep him from needing as many therapies due to decreased overstimulation.”

One mom summed up a common sentiment of participants: relief. “My son doesn't feel different at home,” she wrote. “He is happy with who he is.”


Contact me
I welcome inquiry from researchers who seek to collaborate on further research about homeschooling autistic and neurodivergent children. Please email me at hannahrkking@gmail.com. (please note the extra “rk”). Or find me on Facebook and Twitter @hannahkingblog. Thanks!

Thursday, 14 September 2017

How to raise butterflies: a story in 3 parts

1.
We find their eggs in August under milkweed leaves. We march through the brush along the Don River with a jar and sharp scissors. The eggs are unlike the others you see under the leaves: they’re ridged, luminous, oblong, so tiny. We clip the branch and tuck it in the jar.

At home, they hatch one by one and devour their own eggshells. They’re just the size of a poppy seed then, but with all the features of a grown caterpillar. At this stage they are very vulnerable to predators, so keep them in a translucent mesh enclosure, zipped tight to keep flies or silverfish from the breach. 

Each morning we gather their food—milkweed branches—along the river. It’s quiet there: songbirds call, muskrats trudge about. Occasionally a biker zooms by. We walk back home under the shade of the Gardiner Expressway, our sandals sticking in the dark mud, eyes fixed on the old grain elevators, the stoplight, our street ahead. 

Feed them, love them, watch them grow. The caterpillars munch their way through the milkweed stalks that we’ve bulldog clipped to the top of the enclosure. It is mesmerizing to watch them eat. After a couple weeks, the caterpillars are full-grown. They creep to the top and attach to the branches. We peek in on them often then. It only takes 3 minutes to spin a chrysalis and you don’t want to miss it.

2.
My son attended preschool for exactly two days. On the third day there was no class—just a meeting in a grey shuttered office where the director said don’t come back. I was too stunned to process it, struggled to find my way over to the playground where my son and husband were waiting. “How did the talk go?” my husband asked. His face a blur.

The next morning I sat with Kyle on the couch. We had a worn picture book called Baby Animals and were lifting the flaps for expected surprises. A warm breeze blew through the house. Out of the corner of my eye, I saw something move: one of our caterpillars was beginning to spin its chrysalis.

We raced over to watch the metamorphosis. 
It was 9am and everybody else was starting school.

3.
It only takes 3 minutes to spin a cocoon and you don’t want to miss it. The caterpillar whirls and sheds its skin, balls up into a tiny thing and seals itself in a pale green sack with a dotted, golden seam.

After a week or so, the cocoon becomes translucent. You can even see the orange and black outline of the butterfly within! Soon it will burst forth as a monarch.

It takes a couple days for them to dry their wings. They hang at the top like fluttering jewels. Down below, put a plate with fruit slices. Once their wings are dry they will fly down to sip. Then you know it’s time to go over to the field. Open the enclosure, take out the milkweed branch and hold it up to the sun. They fly.