Autism Society of PEI

Introduction
Good evening, everyone. everyone.  Thanks so much for inviting me here. It’s hard to believe it’s been almost two years since I was last in PEI to speak with you.

I recognize many of you here tonight and am pleased to see new faces too.  In PEI, the autism community is of course not huge in numbers.  The influence you wield, though, is remarkable.  Your work has brought relief and encouragement to hundreds of people and hopefully has set this province on a forward-moving course.

If you’ve heard me speak before, you already know that I regard the honour of being a senator as an opportunity to do good. In the case of autism, I’m determined to give a voice to people who deserve to be heard.

Speaking up for others was also a guiding element of my former work as a journalist. For more than 30 years, I would have to push and sometimes scrap to get at the truth of a story.  And then I would have to push and scrap to make sure that story would reach those who most needed to hear it.  The challenges were ever-present, but they only fueled my persistence.

Epidemiological studies on autism are only in the early stages in Canada.  We need more surveillance and research to acquire accurate data.  Without adequate survey data of our own, we have to rely on the statistics of the US, Britain and other foreign countries – and estimate that one in every 110 children in Canada is now being diagnosed with an autism spectrum disorder.

Based on estimates and the evidence we do have, we’re certain that autism is the most common neurological disorder affecting children and one of the most common developmental disabilities.

For more than five years now, I have been doing whatever I can to support the interests of people affected by autism.  Wherever the cause takes me, I am grateful for the meaning and focus it brings to my experience as a senator.

I know about the stresses families endure.  The sense of isolation.  The desperation for guidance and resources. I know too that the situation can change, and I am driven to see that it does.

Background on National Autism Strategy
In March 2007, the Standing Senate Committee on Social Affairs, Science and Technology released its report, Pay Now or Pay Later – Autism Families in Crisis.  This was the culmination of a lengthy study by the committee, during which we heard several points of view on the complex issues of autism.

Most of you are likely well versed in the recommendations set out in that important document.  Among all of them, our call for a comprehensive national strategy for ASD has stirred the most compelling and enduring debate.

With the tabling of the report, autism advocates across Canada flew out of the starting gate – fixing on a national strategy as the only moral and effective response to the autism crisis.

The federal government’s response to our report, however, was paltry.
When I spoke in PEI in 2008 about the official response of the Government of Canada, I didn’t hold any punches.  In the face of all the facts laid out in that report – from the financial and emotional toll that autism has on families, to inadequate research on causes and treatments – our government hid behind words. According to the response, the government’s knowledge of ASD and treatments was too limited, so it was not the time yet to work on strategies and outcomes.

Why a program to garner baseline data and evidence could not simply be incorporated as a component of a national strategy is beyond me.  Behind our government’s veil of flimsy excuses was the same old story:  ‘Autism is a health and education issue, falling under provincial jurisdiction.  A national strategy would mean stepping on toes and disrespecting constitutional dictates.’

The response also promised a package of research and knowledge-sharing activities.  While it was pretty clear that a web-based information portal and a symposium weren’t going to get us any closer to a national strategy, there was potential in the federal government’s pledge to create a National Research Chair at Simon Fraser University in British Columbia.

This gave me reason to hold out hope.  Many of you probably thought, like I did, ‘this is relevant.  It’s substantial.  Maybe the feds will eventually come through for us.’

Government Response to Autism Crisis
So, where are we today? What is the status of the push for a national strategy?
I’ve already talked a bit about the Government of Canada’s official response to the Senate’s 2007 report on funding for autism treatment, and will update you on how it has played out over the past several months.

In March 2010, I requested in the Senate an update on the strategy for ASD.  In answer, the Library of Parliament set to work to gather the available facts and compiled them all for me in a one-and-a-half-page document.  Here are the highlights of what was uncovered:

  • In August 2009, Simon Fraser University requested that the contribution agreement for the research chair position be terminated.  The federal government’s explanation was that there had been difficulties in the recruitment process.  Given the government’s failure to put up sufficient funding for the position, I’m sure there were difficulties in attracting suitable candidates.
  • Building on its pledge to support knowledge sharing, the government, through Health Canada, has helped fund projects of the Canadian Autism Intervention Network.  Between 2008 and 2010, $75,000 was allocated to help the network update its website, host a conference and conduct a survey among autism stakeholders.
  • The government has also set aside $10.3 million dollars for the Canadian Institutes of Health Research to build on autism-related research conducted to date.
  • Finally, Budget 2008 delegated the Public Health Agency of Canada to carry out an initiative to look into the links between environmental contaminants and childhood developmental disorders. I unfortunately have no further information on this research or any findings.

Though there is evidently some support coming from the federal government, it’s difficult to gauge its impact – if any.  What is clear is that the contribution of our elected Ministers and their departments falls far short of what is best for Canada. It’s just not good enough.

A few months ago, I was addressing a local Kiwanis group and reached a similar point of dismay over the federal government’s failure to help our country’s most vulnerable citizens.  After my presentation, an elderly fellow approached me to say that, while he agreed with most of what I’d said, he wouldn’t completely dismiss the government’s efforts.

He then told me about a program offered through the Canada Revenue Agency that enabled him to set up a savings plan for his autistic grandson.  It’s called the Registered Disability Savings Plan. I’m sure many of you know about the plan, but I want to stress that it’s an excellent vehicle for parents and grandparents of children with disabilities.

The criteria for being accepted to participate are set out in the Income Tax Act.  This is the only link between the program and the Act. The criteria are not about specific disabilities but, rather, have to do with the day-to-day life of the individual with the disability.

For every contribution you make, the government also makes a contribution. What’s wonderful about the plan is that it’s income-driven – that is, the less a contributor earns in income, the more the government will contribute.  This becomes especially relevant when the child for whom the plan has been created turns 18.  At that point, government contributions become based on the income of the individual with the disability.

I mention this plan for two reasons:  For one thing, it’s a savings vehicle that families of children with disabilities should aware of.

The other reason is because it functions as a check – for me, and possibly you too.  I can be so preoccupied with autism-specific programs, that I am sometimes prone to over-looking more general programs that could also support our goals.  Maybe even complement a national strategy.

a)  Advocacy on the Hill
The federal government is only one determinant of where we are in our pursuit of a national autism strategy. The landscape is considerably more intricate.
Parliament is also part of this landscape, and I can give you a first-hand account of what’s happening on the Hill to help address the challenges associated with autism in Canada.

Several months ago, I introduced in Parliament Bill C-211, An Act respecting World Autism Day.  I did this because I’m convinced this day could be instrumental in helping to raise awareness and enable Canadians to express their compassion and respect for those living with autism.

When I undertook to make this bill law, I had no idea that politics and circumstances would complicate what should have been a simple process.  I’ll give you the play-by-play of what’s been happening…

On May 14, 2009, the Standing Senate Committee on Social Affairs, Science and Technology passed the bill and, the next day, it went through third reading in the Senate.  Then it went on to the House, where it passed first and second reading.  When it was about to go to the House committee, parliament was prorogued.

Bills that did not become law prior to prorogation were sent right back to where they began.  In April of this year, at second reading of the bill, I found myself again before the Senate’s social affairs committee.  This time, they did not pass it.  Instead, they asked for four amendments.  Even with the knowledge that amending the bill would mean having to reintroduce it, committee members insisted on these changes:

  • Replace the figures in the statement that ASD affects at least one in 165 families with the word ‘significant’.
  • Remove the clause, “whereas the number of Canadians diagnosed with ASD has grown by 150 per cent in the last six year”.
  • Remove “[W]hereas autism affects more children worldwide than pediatric cancer, diabetes and AIDS combined”.

To me, the amendments diminished an important element of the bill – the context.  When time moves on, numbers take on significance.  They show that at a certain time in history, those were the benchmarks of what was happening. Canadians will one day see the numbers and assess what we did and did not do.

The fourth amendment was the hardest to swallow.  Committee members took exception to the statement, “whereas Canada has no national strategy to address ASD”.  They questioned its validity, making loose reference to programs put together and paid for by the federal government.

Anyone close enough to autism issues would have seen the irony.  Their examples of effort only reinforced the argument that Canada lacks a strategy – and needs one.

Unfortunately, on that day, those close enough to the issues were in the minority.  That, I’m afraid, is politics.

The bill is now out of the Senate and in the hands of a Conservative MP and there are promises in the air that it will be expedited to soon become law.  If this doesn’t happen before the next election, it will have to be introduced anew, yet again.

I will keep on pushing, but sometimes I feel like I’m one person alone on the Hill.  I used to share this cause with Conservative Senator, Dr. Wilbert Keon, who is an advocate for better autism research – but Dr. Keon retired from the Senate just last spring.  I miss him.

My colleagues don’t reject the significance of autism. The problem is that there are so many other issues competing for attention.  The pushback I get is that I should stand for disabilities or developmental disorders generally.  Not autism specifically.

I have been making my case within my party, though, and am hopeful that autism will be incorporated within the Liberal party platform.

Since I was here last, I’ve travelled from coast to coast to coast – talking with people, advising them and trying to keep them connected and hopeful.  I say to them repeatedly, ‘no, you don’t have to leave your home to get the support you need’. My message is always, ‘never give up’.

Through my travels and exchanges with thousands of people coming from all corners, I get to hear about a vast spectrum of initiatives.  So much of what I learn prompts me to ask myself, ‘what if?’

In March 2008, I went to Cuba as part of a Senate committee fact-finding mission population health.  There, I visited a number of polyclinics – clinics that deliver a spectrum of education and medical services – set up within neighbourhoods everywhere throughout the country.

In one of these neighborhood clinics, I saw a classroom where grandparent-types were being instructed on subjects including child behaviour and child psychology.  These students were enrolled in a one-year degree program to prepare them to care for their grandchildren.

Naturally, I thought, “what if Canada could do this? What would it mean to the parents of autistic children to have their own parents in the support mix?”

Goodness knows there are parents right here in PEI who would could use a break from someone they know and trust.

Cuba also has clinics specializing in autism.  In one I visited, there were about 20 kids receiving treatment.  And for each child, there was dedicated therapist.  Again, I contemplated “what if Canada had the infrastructure to train and employ the specialists needed to help kids diagnosed with autism?”

I stand by possibilities like these and believe it’s time Canada start preparing its future nurses, doctors, therapists and other healthcare workers with autism-specific instruction and training.

b) The Grassroots
Despite the absence of national standards for treatment and research, autism organizations at the local, provincial and national levels comprise the most vibrant and promising elements within our landscape.  In the past year, I’ve learned so much from exceptional people who are focused on meeting the mounting autism challenge.

Last spring, I had the pleasure of meeting Antonia Pigot, a former teacher who left her job in the mainstream education system to study music therapy for special needs kids.  Since moving from Nova Scotia to Ottawa, she has been frustrated by a school board that she describes as conservative and resistant to her therapeutic approach.

For the time being, Antonia has found a niche at a local centre for special education.  Now that the directors of the centre have witnessed the impact music therapy is having on the students, they are looking into adding it to the curriculum.

I had the chance to see a video the centre made of one of Antonia’s sessions with the children. In lieu of showing you this video, I will describe the evolution of one boy in the group.  Initially, he is very defensive about the new experience, with Antonia playing music and inviting him to participate. It’s easy to recognize his behaviour.  No words, but gestures suggesting the potential for a tantrum.  In subtle steps, though, he is gradually drawn in by the melody and the rhythm.  In the end, we see the same child touching the guitar, responding with pleasure to the sounds that he himself is creating.

For decades, music therapy has been reaching inside the faculties of children with developmental disorders – evoking in many of them their first sense of self and satisfaction.  Though the goal is to widen the child’s musical experience, the approach also addresses cognitive, expressive, sensory and social deficits.

Yet it is not a nationally recognized therapy for autistic children and, across the country, there is extreme inconsistency in its availability.

Antonia has had to establish her own place within Ottawa’s educational system – one short-term contract at a time.  Meanwhile, in British Columbia, music therapy is well established and used broadly.  In Quebec too.  In PEI, there are apparently at least a couple of music therapists.  I can’t say if they work with autistic kids. Maybe you know who they are.

I remember seeing Don Messer and the Islanders when I was about 12 and I carry with me still the joy and sense of easy belonging his music was all about.  Given this province’s wonderful musical heritage, I would think that this type of therapy should be thriving.

Another program I’d like to talk about is Quick Start, which has just been established in Ottawa by Suzanne Jacobson, a lady who’s become a dear friend. Suzanne’s grandson Alex was diagnosed as having autism at about two and a half, but it wasn’t until he was four and a half that he finally began Intensive Behaviour. Knowing that early intervention is key – but having to wait so long for it – was harrowing for Suzanne and her family.

So that other families won’t have to endure the same agony, she has helped create a clinic providing preliminary screening to determine each child’s needs.  It also offers one-on-one consultation and group support sessions.

Suzanne is currently set on raising almost half a million dollars to pay for expansions to the clinic.  Her goal is to see it open three days a week and to have nine healthcare professionals on staff to help even more children and their families.

When I last visited the clinic, a Nova Scotia family was there for assistance.  Why? Why? Why do families have to leave home for care?

These and countless other small programs and initiatives are brilliant and mean so much to the families they reach, providing them with precisely the kind of assistance they need.  What does it say, though, that they have to raise their own funds to meet the needs of their clientele?  Who is looking out for them?

The provinces, of course, have a role to play here.  I’ve conducted an inventory of what the provincial and territorial governments are doing to introduce and advance autism programs.  It’s not surprising that the differences between each province and territory are staggering.

I should mention that I am generally encouraged by the PEI government’s commitment to programming for autism.  I think we’d all agree, though, that it could have offered more.

c) Organizations with national scope
Fortunately, Canada has some larger-scale organizations that push the necessary research forward, share knowledge and allocate funds to select programs.  Autism Speaks Canada is about to announce the first round of Family Services Community Grants – more than $550,000 being granted to agencies, schools and organizations.  These grants of $5K to $25K are meant to build capacity, augment services and bring unique programs to underserved areas.

Autism Speaks Canada made tremendous strides in raising awareness this year through the Light it up Blue and the Toys R Us puzzle piece campaigns.  Campaign organizers aim to involve all the provinces in these campaigns in 2011.

The organization has also begun building a Canadian family services database so families and others can search for services and supports by postal code. When the database is ready, anyone will be able to get fast answers to questions like ‘where can I get a diagnosis, a dentist, a therapist, speech services, group support, legal advice?’ etc.

True to its name, Autism Speaks lends its voice to the call for a comprehensive and sustainable national autism strategy.  Representatives are talking with officials from the federal government – exchanging ideas and hashing out what needs to be accomplished.

Another formidable exponent of a national strategy is Canada ASD Alliance or CASDA, which is a coalition of 38 individuals and organizations across the country.  As, of course, you know, the Autism Society of PEI is a member of this coalition.

Led by Autism Society Canada, Autism Canada Foundation and the Geneva Centre, CASDA has just this past week released a proposal for working with the federal government on getting a national strategy off the ground.

What CASDA has proposed is a culmination of more than three years of dedication to a cause and of learning the processes and perspectives of federal government decision-makers.

The proposal, if you’ve haven’t had a chance to see it yourselves, is a persuasive roadmap for federal-provincial action.  It clearly identifies the areas where action is required most:

  1. Building knowledge and raising awareness about autism.
  2. Sharing best practices.
  3. Addressing the huge challenges of Canadians caring for children with ASD.

For every goal, the proposal identifies just what needs to be done by the appropriate government department or agency.  To achieve autism surveillance, for example, CASDA outlines this rationale:

  • The Public Health Agency of Canada is mandated to carry out the federal government’s responsibility for public health issues.
  • The agency has a full complement of employees, including some of the best epidemiologists in the country, working on Surveillance and Population Health Assessment.
  • The government needs to direct a portion of this surveillance expertise to autism.

This is the alliance’s approach throughout the proposal. Here’s the priority, and here’s the action.

Whatever the response to this proposal, it is clear that the alliance has entered a new and promising stage in its approach to pushing for a national autism strategy.

Conclusion
In updating you on progress toward a national strategy, I have outlined indicators by segment. Government.  Parliament.  The grassroots and provincial organizations.  And the larger organizations.

It is clear we need a national strategy to pull together the disparate efforts that exist across the country, helping us to be more effective and coordinated our work.
In the absence of an appropriate response from our government, the individuals and non-profit organizations of this country’s autism community have had to carry the weight and have been doing so valiantly.

The determination that fuels your activities is stronger than ever.  Examples of innovation and resourcefulness abound.

The pursuit of a national autism strategy has compelled the appropriate organizations to take the lead.  To reach consensus on issues.  To become savvy and effectively campaign for those issues.

There are now discussions underway between these organizations and federal government officials.  These exchanges could well be inroads.
Now, we are hearing about partnerships with the government and proposals.
All this represents progress.

Rather than speculate further, I want to thank you for what you do each day for children and families affected by autism.

For my part, I will keep fighting and will continue to urge the groups I speak with to keep fighting too.  Never give up.  And never lose hope.

You are never alone.