Christian Wright and Autism Speaks

You can click above to watch a trailer of Autism Speaks' new film, Sounding the Alarm.  The film is now available on Netflix for free if you are a subscriber.  Like all things in the world of Autism Speaks, it is designed to educate and inform, and likely make neurodiversity autistic self-advocates get pissed off and write another scathing anti-Autism Speaks post on their blogs.

I have written before that the autism spectrum is now so wide it has become meaningless, pitting the parents and friends of people who have very severe autism against the high functioning autistics of ASAN who function quite fine in society, thank you very much.  Although diagnostically, severe and very mild autism share features, the day-to-day reality is so different that we may as well be talking about two completely separate disorders (and therein lies the rub - for the neurodiverse crowd, there is no disorder, just a difference.)

Most parents of children with severe autism are sympathetic and supportive of Autism Speaks, because although they do good work for everyone on the spectrum, they tend to focus on the families and people with severe autism and present that reality.  I do not particularly understand why this ticks the higher-functioning crowd off, because if your autism is not causing you disability (and I would argue if it does not, you don't have it according to the DSM-V), why should you care other than the "autism" label being tainted with severe autism realities?

Many people criticize how Autism Speaks uses their funding and for good reason.  They spend too much money on research and salaries and not enough on communities and individuals.  This is changing, but not quickly enough.  However, one cannot dismiss the awareness and education Autism Speaks has brought to the world, and this is good enough for people to support them, in my mind.

Christian Wright has severe autism, and as a result, his grandparents founded Autism Speaks.  Although I do not celebrate how much autism impacts Christian's life or that of his parents or grandparents, I do think his life story so far can be very guilt-relieving for many parents.  Christian was diagnosed early, and despite the best care money can buy, including ABA, speech therapy, OT, and DAN protocols, he remains severely autistic, non-verbal (he uses speech output devices) and has behaviour challenges.  Although early intervention and treatment works for all children to some degree, there is huge variation on response (due to cognitive ability).  What I like best about Christian's story is that you can do everything right as a parent and still have a kid with severe autism.  On the other hand, a child could receive minimal treatment and make huge gains, relative to someone like Christian.

Does this mean autism treatment is meaningless?  Not at all.  But it does bring wide attention to the fact that autism is a lifelong disorder for most, and severe autism may not be ameliorated in a big way by treatment.  Every gain made in autism treatment is worth fighting for, absolutely, but we must also be prepared to give a meaningful life for those who have severe autism, and recognize that every skill gained is a gift.  This is what Christian's life shows to me at least, and it is a message we need to hear - not just the feel good autism stories about brilliant quirky young men and women.  Those stories are indeed worth telling, but you only need to talk to families with both sides of the spectrum in their houses to understand that they are not the same realities.  People need to understand this, and I am happy Autism Speaks is getting that message out.

National Autism Strategy is a Distraction

My fellow blogger over at Autism in New Brunswick is a strong advocate of what he calls a "National Autism Strategy" for Canadians.  In the latest post on the topic, he mentions four key points for such a strategy:

a.) the development, in cooperation with provincial-territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder;

b.) the development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder;

c.) consulting with provincial-territorial governments and other stakeholders on the requirements of implementing a national surveillance program for autism spectrum disorder;

d.) the provision of additional federal funding for health research into autism spectrum disorder.

This is not news; many people have advocated for this strategy in the past, and some will advocate for in the future.  I personally feel pushing this politically is a waste of time and amounts to us chasing our own tails when there are real advocacy issues and pursuits we could be tackling.

First, a little lesson in Canadian politics.  Canada is a federation, which means that there is a division of powers between the federal (national) government, and the sub-national governments, the provinces.  Canada's constitution guarantees that both governments can legislate in their respective jurisdictions.  When there is disagreement, the Supreme Court of Canada usually must rule to determine which government may legislate (this happens more often then you would think).  There are also many areas of shared jurisdiction, which makes some legislation fuzzy in terms of validity as per the Constitution.

Autism Services in Canada fall under three main areas:
1.  Health
2.  Education
3.  Social Services

All three of these areas fall under almost exclusive provincial jurisdiction (the exceptions being federal monitoring and approval of drugs and treatments and the health, education and social services of on reserve native Canadians).  In Canada, although the federal government approves drugs and other health treatments, the provinces are responsible for regulation of health professions and which treatments are covered under provincial health care.  Thus, from an autism services perspective, this is largely an area of provincial jurisdiction (and I would say mostly exclusively).

Some people argue the federal government could use its spending powers to implement a National Autism Strategy, but I would argue all this would do is setup the federal government as a transfer payment agency with zero accountability on how that money is spent.  While I would enthusiastically support direct federal transfers to people with disabilities including autism, this is not a National Strategy, it's just more money.  There are no guarantees of new outcomes.

I will also mention that I held these views before I moved to Alberta and my presence in this province does not alter my opinion.  While some may say it is nice for me to have this opinion in the province that provides by far the best services in Canada, I'll remind you we moved to get here rather than wrestle with the Ontario government.  If you are in Canada, there is no reason you could not do the same.

Now, let's look at the four items proposed above on what would make a true "National Autism Strategy":

Regarding Evidence-Based Standards for Diagnosis and Treatment
There is already lots of evidence and reports on what is considered evidence-based practice.  I don't think we need to make an official Canadian document to espouse what is already well known and described in the scientific literature.  Any standards created would add nothing to the existing literature and could be largely ignored by the provinces, since diagnosis and treatment are in the health, education and social services areas of government and thus not within the federal government's ability to legislate.

Innovative Funding Methods
I am not sure if this is code for "transfer more money from the federal government to the provinces" or let's talk about best practices for funding autism services using the charitable sector.  While this is a good idea, I am not sure we need to pay a bunch of people a lot of money to do this when there are great examples of many organizations doing good things across Canada.  Why do we need a National Strategy to tell us this information when it is already available?  I do think there is some room here for funding methods in more remote regions of the country but this problem is not unique to autism.

National Surveillance Program
I agree it is odd that Public Health Canada does not track statistics on autism, and this actually in their area of jurisdiction.  So okay, let's do that.  But this alone is not a National Strategy on Autism, it's just a policy correction.

Federal Funding for Autism Research
Translation:  Please give more money for autism research oh rich and powerful federal government.  Okay, fine.  But again, not a strategy people, just a policy variation.  Who is not asking the federal government for research money?

Lastly, let's look at one area for which we do have a national strategy - mental health.  The strategy itself gives many "priorities", but all this really amounts to is a laundry list of asks to Canada's provincial governments.  There is nothing here that will practically change the lives of people with mental health issues.  It's a useful document, but one that will be shelved like all others with some of the recommendations implemented by some provinces.  For a national strategy, it is not effecting any national standards in mental health.  Why is this?  Because it can't.  Mental health, like autism, is largely in provincial jurisdiction.  Many provinces have local boards or authorities running programs for both autism and mental health so services are not even consistent across provinces let alone nationally.

Even assuming you could create a strategy and have it implemented by the federal government there is no way all Canadian provinces would accept it and implement it.  It's a fantasy.  Could we change this?  Maybe. We could attempt to change the constitution but we all know how that went last time.  Most constitutional changes in Canada attempt to weaken, not strengthen, the position of the federal government anyway.

Real advocacy in Canada could be a national effort, but it must be directed at the provincial level.  The provinces can legislate in these areas and the provinces have responsibility for them.  A National Strategy for Autism is just a distraction for the real advocacy we need in Canada.

This Could Be You

Colleen Cunningham, a mother in Sarnia, is facing my greatest fear.  Her son Nathan, now 21, has cerebral palsy and has severe disability.  He requires 24 hour care.  You can read more about her story here.

Based on what I can glean from this article, Colleen is alone, aging, and her own health is failing.  Her son will never be independent.  But there is no room for him in a group home.  Colleen's desperate solution is to abandon him in respite care, forcing the government to intervene in his care.

My heart aches for this mother.  No one wants to abandon their children, and the irony is that Nathan could probably remain at home if Mom had some supports, but there is "no money" in agency budgets.  Other support services in Ontario, such as "Special Services at Home", have been frozen since 2007 or earlier.  You can apply for such services and be awarded money, but you are wait listed.  As families give up their funding, the funding is clawed back by the government.  Why we are paying bureaucrats to collect names and determine pretend grant amounts while people with disabilities get no support is beyond me.

Do you have children with disabilities?  This could be you someday.

Children with severe autism are transitioned into a school system that is not designed for their needs, and inclusion zealots are happy we do this.  Inclusion is cheaper and better for the child, according to them.

Here is the harsh reality for many children with severe autism.  While they are included in classrooms, they may, if they are lucky, meet some children in schools who are willing to be their "friends".  I don't discount how happy this will make some parents, including me.  But at age 21, those elementary school friends are long gone and are probably replaced by support workers.  Inclusion is a happy place for the time, but that friendship is temporary and does not help the child gain long-term skills needed for independent living.  My own daughter A has friends close to her age, but it is not an even relationship.  It takes a special person to be friends with A, and as A ages and becomes developmentally further behind (at least socially), these special people will become harder to find.

School is a place for academic learning and socialization.  Yet very few schools have any formal teaching for socialization because the vast majority of children come to school with basic skills and learn the ropes as they go.  For many kids with autism, academic skills beyond literacy, writing and numeracy are not very important.  Life skills, or adaptive skills, are much more important.  I would rather spend a day teaching A how to use a public washroom then say teaching her about native Canadian villages.  But schools aren't designed to teach kids about using public washrooms, because most children don't need special training to learn this skill.

Parents, ask yourselves - when school is done at 21, are you comfortable knowing your child learned all they could to be as independent as possible?  If not, in my opinion, time was wasted.  Because in the end, the responsibility for the child falls back to you.  There is no schooling after age 21 in most jurisdictions, and in Ontario at least, getting into a group home is no easy task.

I admire parents who say they "accept the autism" and "just enjoy their children".  I think sometimes parents need to let kids be kids, disability or not.  But we also have a duty to our children, and for our own sanity, to prepare our children to be independent.  To me, that means making the most of every opportunity, and it means the public school system is no place for A.

Early intervention is touted as a way to save money by "teaching children how to learn" and allowing them to achieve "average functioning".  Yet very few children do so.  In Ontario's IBI program, the proportion of children meeting average functioning is only 11% of discharges.  There are also no studies indicating if children in this program retain their level of functioning after they enter the school system.  In other words, IBI gets them to a certain level of functioning, but we don't know if they can maintain that level once the intensive supports are removed in a school setting.

I don't want Colleen's story to be mine in 16 or so years from now.  Do you?

Inclusion is no solution - children need life skill teaching from discharge.  It's too bad Ontario's public education model will never put the individual's needs beyond that of its employees.  Shame on us for letting it happen.

Toronto Board of Education and Ontario's Double Standard

The Toronto District School Board has decided to follow thorough on its plans to eliminate 87% of Education Assistants.  Over 400 education assistants will be laid off, and over 400 early childhood educators (ECEs) will be hired to replace them.  ECEs are required by Ontario law to deliver the new full-day kindergarten program.

Don't feel too bad for the educational assistants though.  The government has offered to hire them as ECEs if they will complete their ECE training at a local college within two years.  

I have posted before on how unfair this is to special needs students.  Don't be fooled - the lack of assistance for students will result in more students being sent home or attending for partial school days only.  Parents will have to fight more than ever for services that should be provided to them freely.

If that is not unfair enough, consider the double standard the government applies to early childhood education and special education.  Apparently, to work with four and five year old children in an educational setting, you need a one or two year diploma to qualify you to deliver this education.

Colleges in Ontario have offered a good program in Autism and Behavioural Science for years now, yet no educational staff who work with children with autism require this diploma.  Tell me why an untrained educational assistant is qualified to work with children with autism, yet that same EA requires a year or more of training to work with young, typical children?

There is no choice for children with autism in Ontario.  Either the child is home-schooled (partially or full-time), the parents are on the hook for the full cost of their education, or parents must flee the jurisdiction.  Don't worry though, little Jonny is getting a fully trained early childhood educator and can attend school all day.  It'll save his parents a bundle on child care.  What's not to like about that?  

Latest Toronto School Board Plan Proves No Accountability in Special Education

The Toronto District School Board is considering a proposal to balance its budget by reducing educational assistants by 87% (reducing 493.5 full time equivalent positions to just 63.5 positions).  The stated reasoning is to hire 400 early childhood educators to fulfill the board's requirements in implementing full-day learning for four and five year old students.

Special education funding is very seriously misused in Ontario.  Although money is allocated for special education, it is given to each school board to do with as it pleases (a fact stated by an education official in the above article:

A spokesman for the education ministry, Grahame Rivers, said funding for the TDSB has increased since 2003.

“Ultimately, it is the TDSB’s decision how to best allocate resources in Toronto schools,” he said.

 Funding is increasing, but funding does not follow each student.  It is allocated based on the needs of the board.  In this way, "special education funding" is a joke - there is no accountability in the way the funds are spent.  Why even bother having distinct funding streams if the boards can spend any way they please?


How is it fair that hundreds of students with special needs are having support staff taken away so that hundreds of four and five year old children have a longer school day?  Schools will do what they can, but the result of this change will result in most students not attending school or attending with reduced hours.  Luckily A is not yet in school, but if she were (and she is old enough to go into early years education) there is no way she could attend without support and actually learn anything.


Some of you may disagree with me on this, but I don't even believe full-day early learning is needed.  I believe it is a back-door way of getting free childcare in Ontario so that parents get a free ride.


Interestingly, a study in the United States on their Head Start program (which includes pre-school education, nutrition and other services for low income families) states that:

The benefits of access to Head Start at age four are largely absent by 1st grade for the program population as a whole.

Obviously we can't compare this directly to Ontario's program since in the United States kindergarten is not full-time.  However, early learning at the four-year old level does not appear (in this study) to influence academic trajectory.

Ironically, parents who try to assist the schools by trying to provide staff of their own are re-buffed and educational assistants will grieve any attempt to put in staff because that person is taking the job away from a unionized EA.  A parent cannot put their own staff in place to help their child, but they also cannot rely on the school to do so either, especially with so few EAs available (now just 64 education assistants for a city of almost three million people).


So for parents of typical children who are four and five:

• They pay taxes
• Both parents can work with free child-care, a.k.a. full day learning
• Extra income = more opportunities
• And if you're in Toronto... special academy schools for kids in music and leadership

For parent of children with special needs:

• They pay taxes
• Their children must attend fewer hours or not at all
• One parent must remain home to home-school or be around when the school ejects the student, or must work full-time to pay for private education
• Parents cannot pay for an EA themselves even if they have the means due to union grievances
• The dollars spent per child for regular children are not refunded to them - they pay the same tax for less service

In short, if you are a regular kid, the system works.  If you're not, you're screwed.

Fairness is not when everyone gets the same thing.  It's when everyone gets what they need to be successful.  This isn't fairness.  It's time for special education funding to follow the children they are to fund.

I feel sorry for the parents of kids in Toronto.

Rebuttal: The Autistic "Advantage"

At first glance, it is hard to see anything wrong with the Globe and Mail's recent article on autism featuring Dr. Laurent Mottron and his colleague, Michelle Dawson.

It is easy to read this article and celebrate it as proof saying, "see, autistic people are intelligent and we are not measuring them properly."  There are some very good points in this article, but there are also some very incorrect arguments.

First, Dawson and Mottron use the word "autistic" to really describe people with Asperger's Syndrome.  Even people like Temple Grandin, who are considered diagnostically "high functioning autism" are really people with Asperger's Syndrome.  The media paints autism as Asperger's Syndrome and the two are not the same thing.  They have related symptoms, but the main point is that people with Asperger's Syndrome can communicate effectively and have no cognitive impairment.

I am not saying this to trivialize the difficulties people with Asperger's Syndrome have - they can communicate effectively but have difficulty with social communication.  This is a very different problem than someone with autistic disorder who is essentially non-verbal and possesses cognitive impairment.

So when you read "typical autistics" in the above article, you really should read, "typical people with Asperger's Syndrome".  I say this because typical people with autism do not have the same skill in communication that Michelle Dawson does.

Now, let's move on to intelligence.  The article says that intelligence is mismeasured in people with autism because of the nature of the test.  First off, I have always believe IQ tests measure ability based on the tasks on the test - that is, a test score represents someone's ability to perform the tasks given on the IQ test.  It is not a measure of true intelligence, because if it were, all IQ tests would correlate 100% - but they don't.  A person could get an IQ of 69 on one test and 86 on another.  On the first test they are cognitively impaired, in the second, they are low average.  IQ tests are a theoretical measure of true intelligence but it is impossible to measure actual intelligence.  You can only get an approximation.

Now, let's examine the argument that if you replace a standard Weschler IQ test with Raven's Matrices, autistic intelligence increases.  First off, some people will do equally well on both tests.  Secondly, it makes sense that if autistics are better at a matrix task their scores will improve.  Some tests like the Weschler scales include a matrix component but also have many other components.  I'll tell you what - you take an IQ test and then base your intelligence on one subtest - your highest score, and I'll bet you were smarter than you thought too.

Doing well on Raven's Matrices proves one thing - you have ability in abstract reasoning.  A definite benefit for sure, but only one part of the construct of intelligence.

The reason we have tests that are standardized across the population is to get a sense of how someone performs relative to everyone else, that is the point of normalized scores.  By saying "autistic people don't do well with verbal tasks" Mottron is recognizing a core deficit of autism - verbal processing.  Since the measure of intelligence is ultimately meaningless (remember, it is a measure of the tasks performed which is an approximation of intelligence - and the approximation varies widely depending on the tasks), it is equally meaningless to say "autistics have higher IQ if given a different task".  Of course they can.  I have higher IQ too if you only give me a task I am good at doing.  This doesn't mean people with autism aren't intelligent, it means ability is quite variable depending on the task and this is not typically seen in the unaffected population.

So putting aside the idea that IQ score = intelligence, I can say that people with autism will have a lower score on these measures than people without autism generally because of the tasks, and by altering the tasks I give, I am not giving the same test.  Then the normalization becomes meaningless because I am not comparing apples to apples.

Or to put it another way - if a person scores 60 on a verbal test of "intelligence", it doesn't mean they are not intelligent, but it does mean that relative to everyone else, they are not good at this task.  Since one's ability to do the task can impact how well that person learns, we have to either change the way we teach or help that person do better at that skill.  Either way, having the measure is useful.

People who advocate for neurodiversity or "acceptance" of autism push the idea that modifying expectations or the environment for autistics will allow them to contribute better to society.  No argument there.  But it is a completely different thing to say, "if I modify the environment, this person is functioning at the same level as everyone else."  No, they are not.  They are doing something they couldn't do before because of a modification.  There is nothing inherently wrong with that, but we have to recognize the difference between being able to do something independently the way everyone else does it and doing it with modifications.  This measure is important because without it we can't really measure progress.

A person's ability to be self-sufficient and independent is based on their ability to adapt and function in the real world.  Sure, some employers may be willing to adapt to help people with autism but why bother when you can hire someone who doesn't need help?  Isn't this the definition of disability?  Mottron does mention that despite "intelligence" day to day functioning is definitely a problem for most autistics.  In some fields, for some people, autism may be an advantage.  For most people with autism, it is not.  Pretending it is is disingenuous, and that is reality.

I should mention Michelle Dawson intervened at the now famous Auton case that determined the Supreme Court of Canada could not compel governments to cover ABA treatments as medically necessary therapy.  Her claim?  She did not receive treatment and she is fine.  Good for her.  My daughter isn't like her and needs treatment.  It's her best shot.

Autism Reality in Ontario

I have been looking for the benchMARKED film for a while now - this is a production of the Ontario Autism Coalition.  It's a good introduction to autism and the realities faced by families in Ontario.  A warning before you watch - the film is a downer and I think the producers meant it that way, so watch it when you're in a good mood.  (If you get a warning saying you have to download a player, just refresh the page and fast forward to where you left off to continue.)




Also, here are some updates since this mini-documentary was made:

• Paul Ceretti lost his appeal and Delanie was ejected from IBI.
• Mackenzie, Paul's other twin daughter, was also ejected from IBI.
• On a positive note, Paul has found a way to train students and other volunteers to continue this therapy for his girls on some level.
• I have no updates on the McIntoshs.

Autism Rates Rise Again

This recent article from the Ottawa Citizen is reporting that the CDC in the United States estimates Autism Spectrum Disorder prevalence at 1 in 91 children (about 1.1% of the population) and 1 in 58 boys (1.74% of boys).  This is a huge increase from the early days of 1 in 10000 births (0.01%).  What was once a rarity is now becoming more and more common.  A typical elementary school of perhaps 500 students will now include between five and ten students on the spectrum.

Will the prevalence reach 5% of boys in the next 20 years?  Governments need to prepare now for this inevitability, while researchers continue to work to determine what must be the missing environmental trigger for this disorder.

In Ontario, this means:

• More trained ABA therapists graduating from Ontario colleges, and appropriate placements for them to gain valuable experience.
• Mandatory training for Educational Assistants (EAs) working with children on the spectrum.
• Increased funding for the Autism Intervention Program - there are over 1,600 kids waiting, and this will get worse, not better, as prevalence continues to grow.
• Better access to early diagnosticians for autism.
• A plan and individualized funding for community care and involvement for adults transitioning from school.

Why a National Autism Strategy Is Not a Panacea

Autism advocates in Canada have been working to develop a so-called "National Autism Strategy".  The latest has been announced by the Autism Society of Canada as part of the Canadian Autism Spectrum Disorders Alliance.  Another pillar of this strategy lies in bill C-360, which will not pass the House of Commons.  The bill is designed to ensure ABA and IBI are considered "medically necessary" as part of medicare and thus must be funded in each province.  In 2007, the Senate of Canada produced a report on autism services in Canada, making a number of recommendations.

Notwithstanding the issue of adult supports for people with autism (post-education period), most efforts tend to go into school-age or younger children with autism.  I will not comment on adult supports since I am not well informed of the issues, beyond anecdotal evidence from parents claiming that they are terribly inadequate.

In Canada, education and medical care are constitutionally controlled by the provinces.  Some provinces welcome money from the federal government with strings attached, but some do not (notably Quebec and Alberta).  The only way for the federal government to directly help families affected by autism is through the federal spending power, which basically means giving money directly to parents, or giving money to other levels of government but only if the rules set out by the federal government are met.

Without going into all of the politics, this is very difficult given the current configuration of parliament.  There is also the issue of singling out autism spectrum disorders as deserving of money but ignoring other disabilities.  This is defensible in that the costs of IBI/ABA treatments are high, but then, not all parents with children who have autism use these methods or agree with them.

I am not going to say "no" to more support to families impacted with autism.  But attempting to force standards on treatment and detection (medical responsibility) or educational standards on the provinces will not work well.  The best we can hope for is more money in the system, hopefully more directed to parents to use as they see fit.

Benchmark Independent Evaluation is not the Issue

Andrea Horwath, leader of Ontario's New Democratic Party (NDP) has issued a press release on the validity of the independent review of the IBI Benchmarks by Dr. Louise LaRose.  She was paid $118,000 for this review and it was "sole sourced" - or awarded without a competitive RFP process.

Ms. Horwath is claiming the review needs to be re-done to be completely unbiased.  Personally I think Dr. LaRose was probably professionally able to do this review in an unbiased manner, and I think the real issue is whether or not the benchmarks make any sense.

The nine regional autism providers in Ontario all have their own "benchmark" criteria for continuing in IBI (intensive ABA therapy), excluding the one they started as RAPON several years ago.  ErinOak Kids has a continuation criteria document that looks a lot like the benchmarks but they do not call it that.  In fact, at TVCC, staff are forbidden from discussing the benchmarks, period.

The benchmarks have been out for at least two years and there are no signs they are being implemented forcibly by the MCYS.  I think the hope is that the benchmarks die quietly in bureaucracy while giving the autism programs free reign in deciding when discharge should occur.  All of the recent court cases have not been won by the complaining parent, so legally they know the challenges will die slowly but surely as the precedent is set.

My hat's off to Ms. Horwath for keeping the government's feet to the fire on autism funding, even if I think she is asking the wrong question.  I might even vote NDP - for the first time ever - in the next election.