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Autism Parents Seek Clout in Federal Election

Activists target ridings with thin margins.

By Tom Sandborn, 1 Sep 2008, TheTyee.ca

Tony Clement

In the crosshairs: Health Minister Clement

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"If my grandchildren had diabetes or cancer, or a condition that put them in wheelchairs, there would be no question about Canada providing them with the treatments they needed. Because autism is less visible and less understood, the government can get away with partially funding its treatment and a shameful patchwork of different programs across the country."

-- Donna Celle, grandmother of two autistic children in Vancouver.

A long-simmering fight between parents of autistic children and Canadian governments over funding for their children's therapy may boil over into this fall's expected federal election. Medicare for Autism Now, a recently formed activist group, means to mount a campaign it calls "The Two Percent Solution" in 14 swing ridings across the country.

In the Maritimes, Ontario and five B.C. ridings, targeting federal Minister of Health Tony Clement and other incumbents who won last time by less than two per cent, the group will press candidates with demands that they support Canada Health Act coverage for autism treatment and full funding for an intensive one-to-one therapy approach.

Clement, who some wags have dubbed "Landslide" Tony, took the Parry Sound-Muskoka riding by a razor-thin .06064 per cent margin in the last election.

Meanwhile, some B.C. families with autistic children are drowning in debt as they struggle to provide their children with therapies they believe will provide important help, therapies that are only partially funded by the provincial government.

Who is Medicare for Autism Now?

Minister Clement was not available for a requested interview over several days of Tyee phone contact with his office as this story was prepared. For at least part of that time, according to press reports, Clement was in Denver attending the Democratic Party convention. However, The Tyee did receive an e-mail from a Health Canada on August 27 that read, in part:

"The responsibility for delivering health services in Canada rests with the provinces and territories and it is at that level that the issue must be addressed. The Canada Health Act (CHA) requires provinces and territories to provide coverage for medically necessary hospital and physician services. The Act does not deal with individual medical conditions. Services provided outside of hospitals, or by health professionals other than physicians, are not insured health services under the CHA. Canada's Government has already begun to address the issues that individuals with ASD and their families are facing."

Medicare for Autism Now, a group that is campaigning to change this federal position, is led by Jean Lewis, a North Shore parent and businesswoman. The group is advised pro bono by David Marley, a gregarious local political consultant. Marley is a former staff member for the federal Progressive Conservative and B.C. Social Credit parties. Lewis's son, Aaron, 14, has been diagnosed on the autism spectrum. Marley has no direct family ties to the issue, but says he first became interested in the 1970s, when a then girl friend's parents adopted an autistic son.

The two say they are determined to change the face of Canadian medicare and rescue a generation of autism-diagnosed kids.

"As a veteran American senator once observed," says Marley, "politicians see the light when they feel the heat. We launched the Two Percent Solution in five ridings in the last elections, and I believe we had some impact on the outcome in two of them. We punched above our weight the first time, and I think this time out the campaign has real potential for democratic renewal. This isn't a partisan effort. It's an attempt to reverse a stupid policy.

'Orphans of the system'

"Putting autism under medicare could be a national issue this time," Marley continued. "The current policy is just wrong. For one thing, it costs a fortune in costs when kids aren't helped and have to be warehoused later in life. The status quo is shameful, especially when Canada considers itself a compassionate country. These children are the orphans of the health care system and we want medicare coverage to cover the costs of an effective scientific cure for autism."

Marley says he predicts the next election will result in another Conservative minority government, but hopes that Medicare for Autism Now's targeted campaign will have enough impact to promote reform.

"We want to hang a few candidates in the window this time," he says.

Marley told The Tyee that most Canadians support his group's demand. He says that an Ipsos-Reid poll taken in 2004 showed that 89 per cent of Canadians support medicare coverage for autism treatment.

But this isn't just about election tactics and backroom strategies. It's also a story about the Celle brothers and their beleaguered family.

In a bright, cheerfully cluttered old house on Vancouver's east side, Dominic bounces down the stairs with a Lego airplane he's just built and engages a visiting Tyee reporter in chatter about the toy. Dominic Celle, 8, and his six-year-old brother, Gabe, have both been diagnosed with Canadian children's most common neurological disorder, autism. Both brothers make direct eye and verbal contact with a visiting stranger, unlike the deeply damaged kids The Tyee reporter remembers from work in a camp for special needs kids in the 1970s. During the afternoon, the brothers work with their therapists, chat happily with their mother and grandmother and play raucously with a gang of friends over for a play date.

The Celle family gives the credit for their boys' improved social and cognitive skills to an intensive program of one-on-one therapy administered by a team of therapists from B.C.'s Early Autism Project, a private sector firm that delivers the detailed therapeutic approach pioneered by California physician researcher Ivar Lovaas.

Deep into debt

Like many of the over 5,000 families in B.C. with children diagnosed on the autism spectrum, the Celles have had to go deeply into debt to pay most of the costs of this expensive approach. Bobbie Celle, the boys' mother, told The Tyee on a summer afternoon recently that the Lovaas-based Applied Behaviour Analysis (ABA) has made an immense difference in her children's development. She wonders why the B.C. government will only cover part of the nearly $100,000 dollars a year it costs her family to provide life-transforming therapy and day-to-day care for Dominic and Gabe.

In the wake of a series of court cases brought by parents of autistic kids since 2000, the province will provide families with funding for autism treatment of up to $20,000 a year until the child is six. After that age, the money available for private therapy falls dramatically to a maximum payment of $6,000. Autism treatment funding varies widely across Canada, with Alberta and Newfoundland paying $40,000 a year, or more, per child, Saskatchewan $25,000, Manitoba only $6,000, while New Brunswick, like B.C., pays up to $20,000 a year for treatment.

ABA therapy involves as much as 35 hours a week of intensive one-on-one therapy for each child administered by a team of five therapists. In the Celle household, much of the work goes on in a room on the living room fitted out as a purpose-built classroom full of toys, books and the massive binders full of detailed behaviour modification programs designed to isolate small elements of behaviour and positively reinforce each successful accomplishment, with meticulous records kept for each behaviour change. The therapists are typically university students, like Angie Ho, who was working with Gabe when The Tyee came to visit, led and supervised by a qualified behavioural consultant.

The process requires extensive involvement by supportive family members like Donna Celle, the boys' grandmother, and their father, Peter. At one point, the Celles calculated that 22 different people were actively involved in Gabe and Dominic's treatment and care each month.

All this work and expense has paid off, they say. For example, Gabe, diagnosed at two, had no language facility at all. After only nine and a half months of therapy, his recognition vocabulary was in the low normal range.

"This change is an indicator of the kind of progress the boys can have with help. We don't know what they'll be like as adults, but we can be sure they'll be more capable than without the program," says their grandmother.

Provincial funding to support this therapy program, partial at best even before age six, plummets to only $6,000 a year to families for each child when they are old enough for school.

Schools picking up the burden: Christensen

About Autism

Autism is the most common neurological disorder affecting children and one of the most common developmental disabilities affecting Canadians. With a prevalence of around one in 150, the autism spectrum disorders change the way the brain processes information and can affect all aspects of development. Classic autism usually appears during the first three years of life. Autism is four times more common in boys than girls, and it affects more Canadian children than Downs Syndrome.

The B.C. government estimates there are approximately 6,000 children with autism in the province.

According to the Autism Society of Canada, there are five Autism Spectrum Disorders described under the diagnostic category of Pervasive Developmental Disorders (PDD) that appear in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) of the American Psychiatric Association.

Three of the Pervasive Developmental Disorders are most common and are usually what is meant when people speak of autism these days. They are Autistic Disorder (also called autism, classic autism and AD), Pervasive Developmental Disorder -- Not Otherwise Specified (PDD-NOS) and Asberger Syndrome.

Individuals with ASDs have varying degrees of difficulty in social interaction and communication and may show repetitive behaviours and have unusual attachments to objects or routines. In the most extreme cases, the child seems almost inaccessible, trapped in a non-verbal world of rocking, hand flapping and other physical tics. In 2007, a national symposium on autism research was held in Canada. The presentations at the symposium are available here.

--Tom Sandborn

The rationale for the reduction in provincial support for ABA therapy when Dominic and Gabe reach school age, B.C.'s Minister of Children and Family Development Tom Christensen told The Tyee, is that the province's schools receive an extra $16,000 per year for each student diagnosed on the autism spectrum.

Christensen says that his government's investment in autism services has increased 12-fold since 2000, from $3.4 million to $43 million, even without including the increased spending in schools. He refused to comment on the question of whether he would support Canada Health Act coverage for autism therapy, and defended the decision taken by the Campbell Liberals to fight and finally defeat the demands of parents of autistic children for full treatment funding in a court battle that went to the Canadian Supreme Court in 2004.

This court battle, an appeal initiated by the previous NDP government, ensued despite Liberal expressions of support for parents while in Opposition, including this from Colin Hansen, now B.C.'s Minister of Finance:

"It is time for the government to stop hiding behind the courts. Let's get on with providing treatment to children as the courts have ordered."

Rich Coleman, now Minister of Housing and Social Development, told the Langley Advance News, "This (appeal) disgusts me completely. I'm so mad. The Government should make the decision to fund."

During this period of great expectations, Gordon Campbell told a concerned parent, according to Families for Early Autism Treatment BC: "The NDP decision to appeal the recent ruling of Madam Justice Allan reflects a government that has consistently failed to act in the best interests of children."

"The medicare question hasn't been given any substantial thought," Christensen told The Tyee. "We are working with the federal government on initiatives to help, including a new research chair at SFU. On the question of going forward with the Supreme Court case, I wasn't in Opposition when the statements you mention were made, so I can't comment. However, once you get into government you have to listen to the best legal advice and that's what we did."

Christensen did tell The Tyee, however, that B.C. government policy reflects agreement that ABA is an effective approach.

"It's the most supportable treatment now, I think," he said. However, Christensen said that he had not met recently with Families for Early Autism Treatment, the province's most vocal advocate for ABA autism treatment.

Parent group not persuaded

Christensen said his staff had told him that the $20,000 annual cap on payments to parents to fund autism treatment was often not fully expended by families qualifying for the money. He pointed out that the number of families receiving therapy support for their autistic children had gone up from less than 500 to over 5,500 since 2002.

Jean Lewis of Medicare for Autism Now is unpersuaded. She says if families are not expending the $20,000 a year, it is because they are having trouble finding qualified therapists in the province.

A note of clarification received by The Tyee from Minister Christensen's press aide seems to support Ms. Lewis's read on the question of parents under-spending the money provided by the province for autism treatment. Kelly Gleeson forwarded the following e-mail on Aug. 28:

"The ministry's program area conducted a three-month sample of autism funding (under six agreements), which ended in January, February or March of 2008: 82 of 122 families (67 per cent) utilized all of their funding.

"Program does suggest, however, that particularly in rural and remote areas, this result is impacted by challenges that families face in locating qualified service providers."

"We have an under-capacity problem at the consultant level," Lewis says. As for the proposed SFU research chair, she says it isn't what's needed most.

"The chair is political, something to put in the window as an election nears. We know the chair should be putting out qualified consultant-level professionals, not doing more research comparing therapies. The research has been done for 40 years and the best available is Applied Behaviour Analysis. Parents of newly diagnosed children often can't get a consultant or have been misdirected into speech therapy, which is not useful until ABA has helped a kid get speech."

Clair Schuman, who heads up Autism Community Training, a not-for-profit province-wide information and referral service created to support families of children with Autism Spectrum Disorders, says she would like to see government funding increased to reflect the real costs of autism treatment.

"We need a system across Canada so all children are entitled to the treatment they need." When asked about the Medicare for Autism Now demand for coverage under the Canada Health Act, Schuman told The Tyee:

"This is a necessary treatment. I don't care what body provides it. Adequate treatment is what's important."

'Nonsensical' cutoff

Schuman, a trained social worker with an autistic son of her own, is sharply critical of B.C.'s current policy of reducing available treatment funding for families when their autism spectrum children reach school age. She says that the government's rationale, that school activity can substitute for one-on-one therapy at home, "just doesn't happen. That money is necessary. The birthday cut-off is nonsensical." She said that a strong body of evidence exists that ABA treatment is the most effective for autism, and more effective when treatment starts early.

In contrast with government documents that claim there is no wait for treatment once an autistic child is diagnosed, Schuman says that there are long wait lists for therapy in the Fraser Health Region.

"This is a real stress for families, children and the whole system," she says.

Andrea Finch is a Vancouver lawyer who has a seven-year-old son who was diagnosed on the autism spectrum when he was two and a half. She says one of the worst stressors for her is uncertainty about the future of the ABA program funding her family receives to help defray treatment costs.

"What strikes fear into me is the prospect of a letter from the government announcing changes that won't respect the individualized nature of this therapy," she told The Tyee. "Of course treatment should be covered under the Canada Health Act. Society is going to pay one way or the other. If these kids aren't helped now, we'll have to deal with them when they are full grown and non-coping adults, and parents can no longer care for them."

Related Tyee stories:

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Tyee contributing editor Tom Sandborn can be reached with feedback or story tips here.

21 Comments:

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  • cece

    3 years ago

    The Autism Funding Vacuum

    Yet again, parents of children with autism spectrum are lobbying for more money. I don't disagree that many children with ASD benefit from their therapies, but the issue simply infuriates me as the parent of a child with Down syndrome who would also benefit from extra therapies that are COMPLETELY unfunded by any level of government. Every time I hear a parent of a child with autism talk about the videos they get or the books they've ordered or the equipment they've installed in their home or the respite worker they've hired, I want to cry. My daughter is 4 and still not walking independently!!!! Where is the help we need?? She can't talk coherently, but I can only get a speech therapist every 3 to 6 months. She's 4 years old and she's certainly not going to get any help in a public school classroom - all the help goes to kids with FASD, Autism and behaviour disorders. Quite frankly, I hope politicians have the good sense to ignore these people. There are more kids out there that need help, too.

  • Birch

    3 years ago

    Schools pick up the difference?

    According to the article, "the province's schools receive an extra $16,000 per year for each student diagnosed on the autism spectrum."

    The weasel word here is "diagnosed." Some autism cases mask themselves as simple misbehavior or emotional difficulty. Both teachers and parents could/can be fooled. Further, school districts are loathe to pick up the tab for special needs testing, a process which may pick up cases that require addressing with extra professional help in the classroom, a staffing level boards can't or won't afford. Numerous children go untested, despite recommendations from teachers that tests be done, simply because boards can't afford it.

    Waiting for school districts to kick into action on this issue, for most parents, will be a long wait.

  • gordon

    3 years ago

    statistics

    Recently i heard some staggering statistics on the increasing autism rates. I believe the rate was 1 in 44,000 20 years ago, and is now 1 in 150, and anticpated to be 1 in 75 within a couple years if the current rate continues. To me these numbers are staggering. Personally i believe that business and industry are to blame for this disease as they pollute our environment and produce all kinds of products that contain any number of compounds that injure humanity.
    Whether we wear it, eat it, live in it, drink it, or are exposed to it, industry is killing humans animals and the planet and they refuse to show any responsibility for their products nor caution in their actions.
    This is a sad commentary on the state of our world, where the electorate has been relegated to the role of consumer to feed the corporations and their stockholders. Take back your world while you still have the ability to do so.

  • SLP2008

    3 years ago

    speech therapy not useful?

    I would like to voice my objectections regarding this statement:

    "Parents of newly diagnosed children often can't get a consultant or have been misdirected into speech therapy, which is not useful until ABA has helped a kid get speech.""

    I do agree about the first part, it is unfortunately ridiculously hard to get a consultant at this time, especially in the Vancouver area. However, stating that parents are being "misdirected" to speech, which is "not useful" is just an utter misstatement. I have worked with plenty of autistic children while they were waiting for ABA treatments to begin and had increased vocabularies from 0 words to many, as well as working on interaction skills which many ABA programs do not do. Please do not be misled and think that all Speech Pathologists do is work on speech!

    On another note, I would like to agree with cece's comment as well. Why should the autism families get all the money? There are plenty of children out there with other difficulties getting nothing or next to nothing. In my work in the public sector I have worked with so many families below the poverty line who have waiting for over 2 years to get services because they can't afford to go private. The government needs to look out for all of the children, not just those with the most educated and vocal parents.

  • mopled

    3 years ago

    Treatment

    There are treaments for both Autim and Downs that the medical establishment refuses to recognize. The government would rather have the parents sqabbling about who gets or needs more of a very limited pot than provide or even allow effective treatment.

    In the long run treatment and recovery is cheaper on the public purse and these parents deserve support.

    http://altonweb.cust.he.net/cs/downsyndrome/index.htm?page=orthods.html

    http://www.autism.com/treatable/recovered/recovered.htm

  • spedteacher

    3 years ago

    Funding and Schools

    In recent years, parents of children diagnosed with autism have been the loudest. I guess the government's policy is that the squeaky wheel gets the grease. It's unfair and unjust but it seems to be the way things go these days. From what the parents that I have worked with have told me, the money provided to families doesn't even come close to covering all the extra costs and I think that some of it comes from the Ministry of Children and Families.

    In regards to the $16,000 schools are funded for autistic students ... Not every student diagnosed with autism receives the full $16,000. The amount is dependent on level of service deemed necessary by special ed. administrators, etc. That money is to be used to pay for the student's special ed. teacher and teacher assistant time at school. Whatever is left over can be used for additional programs, etc. (At least that's always the way it's been at schools I've worked at).

    SLP2008, I cringed when I read that comment about SLP support too. I used to live in a small town in northern BC. We did not have the luxury of ABA consultants so those of us at the school level (along with the parents) worked with our SLP, OT and school psychologist to develop the best programs for autistic students that we could. Just because there was no ABA consultant available did not mean that our students didn't make any progress.

    As far as schools being "loathe to pick up the tab for special needs testing", in my experience the exact opposite is true. If we thought that a student would qualify for Ministry funding then that student jumped ahead of other students on the waiting list for assessment. The school doesn't get the funding unless the student is assessed and diagnosed to fulfill Ministry requirements for funding. But, as far as autism goes, medical personnel make that diagnosis not school district folks.

  • Name

    3 years ago

    Nonsensical funding policies...

    The story and comments highlight the total lunacy of BC's approach to funding therapies and supports that can help children overcome/cope with developmental disability.

    It's akin to a health policy that says everyone with cancer gets $10,000 to spend on treatment - no matter how malignant, advanced or benign the individual's case might be - and then everyone with heart disease gets zero.

    It is totally ridiculous to fund therapy for all children with autism and to provide nothing for, say, a child with Down Syndrome (and I say that as the parent of a child on the autism spectrum).

    It is also totally ridiculous to give every child with autism the same amount of money, regardless of their need. My kid is older and doing fine and no longer requires intensive therapy and yes, I cannot spend the money we get. I've had over $2,000 of your tax dollars sitting in a special bank account for 2 years because government insisted on giving us the money up front. Yet I know there are hundreds of families of kids with autism or other challenges bankrupting themselves, who could really use those dollars instead.

    Meanwhile, what my child really needs is extra support in school so that he can graduate and support himself as an adult instead of depending on the state. But the nonsensical BC Liberal funding policies do not allow us to spend those CLBC dollars in school, where they are desperately needed, so they sit there wasted, doing nothing.

    Professionals in the field have been urging government for years to review their policies so that available dollars are focussed and allocated based on need, not diagnostic labels or Ministry turf.

    But no, that would be just too sensible. Instead, this government is going in the opposite direction, for example the recent decision to exclude anyone who has an IQ over 70 - a ridiculous new eligibility criterion for a population where IQ is an increasingly meaningless predictor of need or adaptive capacity, especially among those with autism spectrum disorders or Fetal Alcohol Syndrome. And again, a decision that will hurt taxpayers because all those individuals with IQ over 70 will instead have to rely on far more costly crisis intervention services - hospital emerg, police, justice system, ambulance, etc...

    It's a fiscal crime and a human tragedy based on pure stupidity!

  • Name

    3 years ago

    Don't blame parents...

    In response to comments from Cece and others, let's not blame the parents who have fought -- as any parent would -- for the support their children so desperately need.

    It is the government that has chosen to respond in a manner that is blatantly inequitable. Many autism parents continue to advocate for such supports being made available universally, based on need, not labels.

    A classic example came to light this summer, after revelations that Premier Campbell privately committed $20 million to one well-connected family who wants to construct a high-tech building with swimming pool and sports centre for children with autism. An online poll showed most parents of children with autism thought this was a blatant waste of money and that the $20 million should go to expanding the availability of services delivered locally for all -- i.e. that it should go to individuals with all disabilities, not just autism.

    Having seen the benefits of effective intervention for ourselves, whether it's ABA, special ed, SLP/OT, social skills training, etc, who would not want to see these things made available to every child, youth or adult who needs it?

  • dorothy

    3 years ago

    time to take another direction altogether...

    "I believe the rate was 1 in 44,000 20 years ago, and is now 1 in 150, and anticpated to be 1 in 75 within a couple years if the current rate continues"

    Something is wrong with this picture! The approaches we are choosing now are obviously of a class with trying the same method and expecting a different result, i.e. the hallmark of insanity. It is time to stop trying to fix this by individual treatment, and instead take a step back and endeavour to find out, what part of the big picture it is we are not seeing. We should go looking for parameters that can explain this tremendous increase in cases, and raging broadly against 'industry' is not enough. I know, I know, it is not considered politically correct to suggest that this was avoidable, that people or even possibly families are partly responsible for the damage through their choices, but forget the blame thing for now, as we are/were all acting in the best of faith, until whatever it was hit us in the back. Try to be objective. It seems vital to me, that we do solid research and get real information in extremely short order, or else this may develop into a problem we will have no chance of handling, not to mention that even with the bestest and mostest help, we are still offering these children as well as their 'regular' siblings and others around them a pretty crummy set of choices. We really need to do better.

  • Name

    3 years ago

    It's not that easy...

    If there were a simple answer, Dorothy, they'd have found it by now. Instead, it's looking increasingly like "autism" is an umbrella for a cluster of symptoms that may have diverse and complex causes.

    Yes, we should try everything possible to "plug the dyke". But that won't stop the need to respond to those with autism and/or other such labels, who will always be amongst us.

    If we step out of our "neuro-typical" box of perception, as young adults with autism are increasingly demanding, and recognize these invidividuals as differently abled, it sheds a whole different light on the issues and challenges. Basically, it can be argued that we have tacitly agreed, for the sake of convenience and efficiency, to configure a world that caters to the neuro-typical majority, and in doing so it is we who have created the "disability" among those who don't fit comfortably within the arbitrary parameters we have set to define what we deem to be the "norm".

    Whether that's right or wrong doesn't really matter. They're here and we either have to adapt our world to accommodate them or provide the necessary supports to allow them to live in that world with the same dignity afforded to other human beings. Our most fundamental principles of morality dictate that we can't single out and deny this to any group, although that is exactly what we are doing.

  • dorothy

    3 years ago

    Uh-uh, I don't buy it.

    “If there were a simple answer, Dorothy, they'd have found it by now.”

    Not necessarily. Man as a species excels in not being able to see the forest for the trees.

    “Yes, we should try everything possible to "plug the dyke". But that won't stop the need to respond to those with autism and/or other such labels, who will always be amongst us. “

    I don’t believe I said that. I said it isn’t enough.

    "Basically, it can be argued that we have tacitly agreed, for the sake of convenience and efficiency, to configure a world that caters to the neuro-typical majority, and in doing so it is we who have created the "disability" among those who don't fit comfortably within the arbitrary parameters we have set to define what we deem to be the "norm"."

    I see this thinking as a major cop-out. In the world without our configurating hand, could these people survive on their own? If no, their disability is real, not imagined or ‘defined’. The norm has become the norm, because it works. If it is possible to find real causes for these real problems, we should focus on that, not just be done with treating symptoms and applying band-aids, however much of an industry we can make out of that. From the numbers, it is obvious that the problems these people suffer from are man-made. We must find out how we did that and unmake them. It is our mess, and we must clean it up.

  • zalm

    3 years ago

    Still juggling statistics

    Quote:
    I believe the rate was 1 in 44,000 20 years ago, and is now 1 in 150, and anticpated to be 1 in 75 within a couple years if the current rate continues.

    This is due to improved diagnostic pathways, not to any increase in the underlying causes of autism or ASD. Most literature still says about 1 in 1000 for autism and 6 in 1000 for ASD. It may be that a student I went to elementary school with had some form of ASD - violent and unpredictable motions, inattention, etc, and we all thought him slow. Teacher too. Autism? What's that? I've got 31 other kids in the class, what am I supposed to do?

    How many kids in the 1960s and 1970s grew up that way, undiagnosed and untreated, left to make their own way?

    And they can, given caring parents and communities. I'm not sure money is always the answer. I'm especially not sure about alternative treatments that don't have recognized outcomes attached to them, but come with high pricetags. They may be valuable - I'm not saying they aren't - but when I'm asked to pay for them.... well I'd rather make sure that our chronic elderly can get at least one bath a week, a bed that's comfortable, food that won't kill them, and at least an hour of recreation with a qualified person every day. And that's not happening under our province's new health regime.

  • zalm

    3 years ago

    Dorothy

    I feel "talked down to" by your comments. I respect that you're trying to promote some action here, instead of what appears tob e constant bickering and inaction, but I respectfully suggest that the issue is NOT black and white, the solution or cure is NOT solitary and obvious if we only throw enough money at it, and this is NOT the only issue we have to deal with.

    My little nephew was born seven years ago with such severe damage to his white matter such that allowing him to naturally pass away was recommended. With a little medical "maintenance", this damage has largely repaired itself and he is a wonderful happy boy - with some severe deficits. We will never be able to diagnose properly what his medical malignancy is, give it a name or embark upon the appropriate treatment. And it isn't really important. We merely address the deficits as they become apparent. His mother tries not to see the specialists too often about every surprise or delay in his development (and there are a lot of points of comparison, because he's an identical twin) and it may be that he never becomes fully functioning in society until a dozen years after his brother, or twenty, or even more.

    It's more important that he loves and is loved; we'll ask for some resources to help care for him, supply others ourselves, and take what we get. Perfection not expected.

    The cause (and we KNOW the cause) is even less important, which is a comment that doubtless brings some relief to the medical team that delivered him.

    Any chance you can reword your very, very strong "call to action"?

  • Name

    3 years ago

    Zalm

    Well said, Zalm...

    And sorry, Dorothy, my comments were not intended to pick an argument, just to highlight that one (finding a cause) won't negate the considerable effort needed to mitigate and accommodate ("the industry") - any more than economic theory has resolved poverty. Knowing the cause of Down syndrome hasn't stopped it and research to date confirms the "causes" of autism will be far more complex than a single genetic or chromosonal abnormality or some environmental assault. The extent of the autism "explosion" is also still much debated; at least part is due to wider diagnosis, with hints that it may be levelling off. Time will tell.

    One of the things we have learned is that people with disabilities, including those from the autistic spectrum, also have exceptional skills and talents (Einstein, Gates, many of us parents). Do we want to eliminate flawed genius from our future in favour of comfortable conformity? We've also learned how foolish it is to just write these kids off as slow, condemning them to lifelong dependence (as would have happened to my PDD-NOS son a generation ago), instead of investing that extra effort to let their talents shine through, to enable them to achieve full or partial independence and/or real engagement in our world.

    I don't see any black & white answers or solutions. I see the need for more compassion AND for research AND for support & mitigation for all those whom we can't "cure". Knowing such a child can teach you to pause and see all the others in our society who are vulnerable - due to old age, poverty, abuse, being "different". They too have much to teach us about how to build a better world.

    There is great pain when you deal with autism or other disabilities, but it's not all about pain. The world is a better place because my son exists, flaws and all.

  • dorothy

    3 years ago

    This will haveto be divided; part one

    Zalm:

    I am very sorry I managed to have you feel talked down to, as I am certainly in no position to do so. I am a parent of three and have lived through the full assortment of pains and joys of parenthood, including some false starts, so I have respect for the grief that is invariably part of the endeavour to try to raise a family.

    The numbers in this, paired with my own ability to look back is what has me ‘freaked out’. I am very aware that we are not looking at anything simple or unidirectional here. What I see as the big picture is a society that is consistent in only one thing: we do not give the next generation its due. I think we screw our children in so many ways I can’t even count them. It is a fact that Canada has not until now really suffered the consequences of such behaviour, for we could just let those we had ruined fall out of the bottom and die, and then we could import fresh workers in good shape from elsewhere. Now the sources are running dry of human material, and we more and more have our backs against the wall and must pay for our own neglects and poor choices.

    You write: “This is due to improved diagnostic pathways, not to any increase in the underlying causes of autism or ASD.”

    But how do we KNOW this? I know for a fact, that record keeping in the medical field has only more recently become what you could call quality-managed. Is this claim not simply a parallelism to the one about increased reporting of sexual crimes, employed because if we look at it as a true increase, then we are faced with admitting at least some responsibility for the catastrophe and bound to go looking for root causes.

    You say: “How many kids in the 1960s and 1970s grew up that way, undiagnosed and untreated, left to make their own way?”

    It is an easy question to pose, impossible to answer, therefore it remains rhetorical. I grew up in the 50’s and 60’s and actually remember reading an article in my mother’s weekly magazine where autism was presented as a novel discovery. It was described as extremely rare and only covered the totally no-connection category. It was equally presented as a new medical entity, for which we now had to go looking for causes. It was not believed then to be genetic in origin. This was when I was 14 or 15, ergo in the first half of the sixties.

  • dorothy

    3 years ago

    and part two

    I believe autism has grown into something of a ‘monster’ since then. I believe there are things being lumped under this set of categories that do not belong there, but I also believe there is a set of real things gone wrong in a very real way, and it rests on us as a society to do our utmost to confront this and look for the reasons. I don’t think only in terms of money, even if that will be needed, but even more in terms of being willing to accept that we might somehow have ‘done this’. We are so afraid of running the risk of ‘blaming’ anyone, but this is entirely an outcropping of small-town Christian pecking order thinking. Is it not more important to not have this happen to an in creasing number of innocent, unsuspecting children in the future than to protect the feelings of adults who can answer for themselves? Do we not owe far more to the future than to our own comfort zone? I believe this is the point I am trying to get through, because I have had it up to my teeth with political correctness standing in the way of confronting things we don’t do right, but could if we would, and bothered to find out how.

    I think we are on the same side in this. I am glad your nephew was allowed to repair himself in peace. The resilience of life always has me awe-struck. I send him and his parents all my best wishes.

  • Name

    3 years ago

    Research on cause, incidence...

    The question of increasing incidence has been much studied. Much of the evidence re an explosive increase comes from California, which keeps meticulous records and which showed an increase in ASD while other diagnoses like Down's remained constant. Only part of that increase is attributable to changes in diagnostic labels - the shift to accepting autism as a spectrum disorder vs just looking at the classic cases. Some (especially in BC) is attributable to funding policies - if a doctor pronounces a borderline case as autism, the child gets help, so there is much pressure to be generous is handing out the label. And yes, some adults from the last generation are being retroactively diagnosed. But others point out that even if you scour the adult population, you won't find equivalent incidence rates to those seen since the early 90s.

    On cause...

    Much of the research has focussed on genetics, with identification of several genes associated with autism in recent years. But clearly, this work shows that there's more than simply having a few specific genes at play. People may have the genes and not be autistic, or have autistic symptoms without having all the same genes.

    Then all the debate about autism being caused by vaccines or toxins. But despite considerable research, controversy and repeated studies, no clear pattern of association has been agreed upon, and a potential link remains vigorously debated.

    Thus the theories of genetic-induced vulnerability to environmental triggers and of a basket of symptoms that may have diverse and multiple causes - sort of like how headaches can be a sign of many different things.

    Looking more widely, we see similar patterns with things like asthma, allergies and other childhood ailments that seem to be on the rise, though the reasons why remain a mystery. Might these all be related and stemming from common, broad, lifestyle-related causes?

    The amount of $$ that has gone into autism research is still miniscule compared to say cancer or diabetes. It's just not worth the investment for the pharmaceutical companies who now fund most such discovery because the chances of being able to make huge profits with a magic pill for a small minority group at the end are infinitessimal.

    Where we have made great strides is in the areas of education and intervention. We now know how to really make a difference in the lives of kids (and adults) with different learning styles. And that's what this initiative is all about - we still can't stop autism from occuring, but we can do something to "treat" the symptoms that make it so hard to live with. And that's all the parents are asking for - that we provide the funding to apply that knowledge to give these children (indeed it should be for all children) an opportunity to live a good life.

  • dorothy

    3 years ago

    for Name

    I see it is time for a declaration of faith here:

    I believe that our single most important task as a society is to put on the road a next generation, which can handle whatever life can throw at them as effectively as possible by means under their own control, in other words, in possession of as great autonomy as humanly possible. If there is one gift we owe our children, it is that of liberty, of self-reliance.

    I am well aware that complete self-reliance, or should I say self-sufficiency is neither possible nor desirable. No man is an island unto himself, but we all want to fly as far as we can, and it is the job of each generation to enable the next one as well as is in its power.

    This should answer your query regarding ‘flawed genius’. No, I would not abolish such a category if I could. I am no kind of ‘fixer’. I agree that everyone can give something valuable to the mix, and act as a teacher, directly or indirectly, and those who appear to give the least often have all their faculties in the technical sense. I also agree that people who contend with disabilities often act as an ‘indicator category’ inasmuch as things that have gone seriously off the rails and will eventually hit everybody in a bad way, hits them first. It is precisely there I see the message of the ‘autism epidemic’ fit in. Maybe these people are simply the forerunners showing what could happen to most or all of us eventually, if we don’t start doing whatever it is differently.

    This rests on the view that humans ultimately differ only by degrees, and if there is anything I believe, I believe that.

    PS Never be afraid of picking an argument with me, sometimes arguments can be very productive, and I don’t do verbal duel to the death.

  • cheap skate

    3 years ago

    Careful what you wish for

    Hmmm, where to start on this. 6,000 kids times $60,000 per year is $360,000,000. With training of practitioners, college and university expansion and oversight that's closer to $500,000,000 or $250 each and every year for every tax payer in the province. Just for 6,000 Autistic kids for an UNPROVEN service.

    My biggest concern in all of this is that the presentation is formed in such a way that there is no alternative. The missionary zeal that repeats the notion that this is scientifically proven is considerably short sighted and misleading. If the kind of money proposed is placed at the disposal of families, we will find ourselves without any SLP/OT/PT or other supports out there. We will be required to use Lovaas and nothing else!

    The jury on the so called Lovaas method is still out. There are children, lots of them, who live normal lives even without the Lovaas therapy. Every one of the 40+ reports I read said that the service was beneficial, not proven. "It warrents more investigation" was the usual phrase. No project since Ivar Lovaas' original therapy sessions has achieved the same results. (go and read the 1970's Life Magazine article and consider if you want to use this therapy) Even his orignal program disciples have stated that the service is marginal at best.

    And before you berate me, I have two children with autism. One refused to be pushed into compliance by no less than four different practitioners. We had to find less stressful methods to work with her. The other, without and in spite of not having this Therapy is currently a straight A student moving into greade 10 even though she did not speak until she was nearly 5.

  • dorothy

    3 years ago

    Yeah, I think so...

    "Looking more widely, we see similar patterns with things like asthma, allergies and other childhood ailments that seem to be on the rise, though the reasons why remain a mystery. Might these all be related and stemming from common, broad, lifestyle-related causes?"

    ...and childhood cancers, and eating disorders, and anxiety disorders in the very young, etc., etc. The list goes on and on. You are right. Is it not about time we do look wider and realize that maybe we are not, collectively speaking, doing right by the next generation?

    I think when it comes to lifestyle, it gets difficult. We must likely look for factors where we can find a correlation in numbers, no matter how poorly they may fit our preconceived notions of what matters. We must start out realizing that we aren'tlooking for the (to us) obvious, for, as was said earlier, then it would likely have been found already. We must also be prepared to take the lessons we might derive, and act on the knowledge, even if that means some things we cherish will have to go. We are already struggling with the recognition of living in a finite world, and so this may be more of the same. Maybe we have been partying too wildly in the convenience and comfort department in one or more ways,and we are now staring needed adjustments in the eye. But if so, aren't our children worth it?

  • zalm

    3 years ago

    Dorothy

    Yes, we are on the same side and I may have misunderstood you

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