THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
OTTAWA, Wednesday, March 30, 2022
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 4 p.m. [ET] for clause-by-clause consideration of Bill S-209, An Act respecting Pandemic Observance Day; and to study Bill S-203, An Act respecting a federal framework on autism spectrum disorder.
Senator Ratna Omidvar (Chair) in the chair.
The Chair: My name is Ratna Omidvar, senator from Ontario and chair of this committee.
On March 2, we suspended our consideration of Bill S-209 and we will now resume clause-by-clause review of this bill. To wind back the clock, and to sharpen our memories, I asked whether the preamble of this bill would carry. Senator Mégie proposed at this point an amendment to the preamble. Subsequently, Senator Bernard moved a subamendment to the proposal from Senator Mégie. We suspended at that time to prepare the wording of the amendment in both official languages.
Yesterday, the wording of the subamendment was sent to you, so we are now picking up where we left off. We are now on debate on Senator Bernard’s subamendment, and I hope everybody has it. If not, we can arrange for you to receive it.
Does any senator wish to speak on the subamendment?
Senator Mégie: I do not agree with the subamendment because it narrows the scope of Bill S-209 and there is a redundancy with what has already been said in my amendment.
I do not think it adds any value to my amendment or to the bill. That was my objection.
The Chair: Thank you, Senator Mégie.
Senator Bernard: Thank you. I have just a few comments to give a bit more context to my subamendment.
In terms of the core issues, based on testimony, many Canadians are grieving for many reasons in the wake of COVID-19. The reality is grief and loss are broad terms which in turn means that healing itself is broad. Loss and grief are not limited to loss of life. And we know there are many types of losses, such as jobs, time, milestones — excuse me, chair, I have someone at my house doing some work so I just need a moment, I’m sorry. This is one of the challenges of working from home. Could you go on to the other speakers?
The Chair: Yes, we will do that.
Senator Bernard: I will come back as quickly as I can. I do apologize to everyone. Thank you.
Senator Patterson: I wanted to briefly say I concur with Senator Mégie. Thank you.
Senator Petitclerc: I would like to express my support for Senator Mégie’s position. I understand, and I thank Senator Bernard for that reflection. With all due respect to the process and what she wishes to do, based on my understanding and experience in the Senate, particularly on this committee and with similar bills, the intent of this bill is that we do not need to be so prescriptive. On the contrary, we must have a bill like this one, which does not go into too much detail, because the way in which organizations, individuals, the provinces and municipalities choose to commemorate this must not be prescribed. That is why I will not be supporting this amendment.
The Chair: Thank you, Senator Petitclerc.
Senator Bovey: With all due respect, I support both. I think the word “healing” is big. It’s a word that’s been used in many contexts in which I have worked with people of many diversities, from many backgrounds and of many ages. I fully support the bill. It is a framework bill, and I would be happy with the subamendment. I will start by voting for the subamendment, but I am also in full support of the bill. This is not an either/or for me; let’s make it as meaningful as we possibly can.
The Chair: Thank you, Senator Bovey. Senator Bernard, we will give you, appropriately, the last word on your subamendment.
Senator Bernard: My apologies again, and thank you all for your patience. I returned just as I heard Senator Bovey saying she fully supports the bill, and I want to make that clear as well if it isn’t already. I support this bill as well. I just believe that this subamendment would strengthen it.
Just to speak about losses, as I was saying before, there are many types of losses. We’ve heard from many people about some of the types of losses they’ve experienced. People have lost their jobs, businesses, time and relationships with friends and family and therefore not having those contacts.
And healing in itself is not prescriptive, because healing can, will and should take many forms. While healing may be seen as an individual activity, we certainly heard from the testimony of many of the witnesses that there’s also a collective nature to grief and grieving these multiple types of losses. So we know that healing will also take collective forms as well. I don’t believe that adding the word “healing” is any more prescriptive than what is already in the bill, which prescribes recovery, remembrance and preparation as stated by Senator Mégie in her testimony.
Just as we know that Canadians will remember in different ways, I think they can also heal in different ways. The subamendment creates space for that to be very explicit.
The Chair: Seeing that no one else wants to comment, let’s proceed to making our decisions. Are there any objections that the subamendment be adopted?
I see hands raised. Since there are objections, shall the decision be that the motion is adopted on division? Or do we require a roll call vote?
Senator Mégie: A vote.
The Chair: Honourable senators, there has been a request for a recorded vote. The clerk will now call members’ names beginning with the chair and followed by the remaining members’ names in alphabetical order. Members should verbally indicate how they wish to vote by saying, “yea,” “nay,” or “abstain.” The clerk will then announce the results of the vote, and the chair will then declare whether the motion was carried or defeated.
Mr. Charbonneau: The Honourable Senator Omidvar?
Senator Omidvar: Nay.
Mr. Charbonneau: The Honourable Senator Bernard?
Senator Bernard: On a point of clarification, I’m lost. I’m not sure. Are we voting on the subamendment, or are we voting on the full amendment? I’m not clear on that.
The Chair: Senator Bernard, we are now voting on your subamendment. Only when the decision on your subamendment has been taken can we proceed to the amendment.
Senator Bernard: So this is the question of whether this should be included or not?
The Chair: Yes.
Senator Bernard: My vote is “yea.” Thank you.
Mr. Charbonneau: The Honourable Senator Bovey?
Senator Bovey: Yea.
Mr. Charbonneau: The Honourable Senator Dasko?
Senator Dasko: Nay.
Mr. Charbonneau: The Honourable Senator Kutcher?
Senator Kutcher: Nay.
Mr. Charbonneau: The Honourable Senator Mégie?
Senator Mégie: Nay.
Senator Bovey: Madam Chair, we can’t hear how people are voting.
The Chair: Yes, I understand. Please do speak up —
Senator Bovey: If they could say “yea” or “nay,” that would help us online.
Mr. Charbonneau: The Honourable Senator Mégie voted “nay.”
The Honourable Senator Moodie?
Senator Moodie: Nay.
Mr. Charbonneau: The Honourable Senator Moodie voted “nay.”
The Honourable Senator Patterson?
Senator Patterson: Nay.
Mr. Charbonneau: The Honourable Senator Patterson voted “nay.”
The Honourable Senator Petitclerc?
Senator Petitclerc: Nay.
Mr. Charbonneau: The Honourable Senator Petitclerc voted “nay.”
The Honourable Senator Poirier?
Senator Poirier: I abstain.
Mr. Charbonneau: The Honourable Senator Verner?
Senator Verner: Abstain.
Mr. Charbonneau: Yeas, two; nays, seven; abstentions, two.
The Chair: Colleagues, accordingly the motion is defeated. We now proceed to Senator Mégie’s amendment to the preamble as amended. Are there any objections that the motion in amendment be adopted? If none, it is agreed. Thank you.
Are there any objections that the preamble as amended carry? None? It is agreed.
Are there any objections that the title carry? If none, it is agreed.
Are there any objections that the bill carry as amended? If none, it is agreed.
Are there any objections to the Law Clerk and Parliamentary Counsel being authorized to make technical, numerical and typographical changes and adjustments to the amendments adopted by the committee? Thank you, colleagues.
Does the committee wish to consider appending observations to the report? No.
Are there any objections that I report this bill as amended to the Senate? Thank you.
Accordingly, we have completed our clause-by-clause review of Bill S-209.
We will now continue our review of Bill S-203, an Act respecting a federal framework on autism spectrum disorder. This is a piece of framework legislation. It provides that in developing a national framework, elements to be included are a consultation process for developing the process, the creation of a conference to develop the framework, the tabling of the federal framework and reports to Parliament following the publication of the federal framework.
I would like to introduce our witnesses for today. From Autistics for Autistics, we are joined by Anne Borden King, co-founder and community liaison. From Autistics United Canada, we welcome Vivian Ly, co-founder and organizing member. I would like to invite Ms. King to make a presentation, followed by Mx. Ly. Ms. King, you have five minutes for your presentation, and then we will move to questions from senators.
Anne Borden King, Co-founder and Community Liaison, Autistics for Autistics: Good afternoon, esteemed members of the Canadian Senate. It is an honour to be here with you today. I’m Anne Borden King, and I’m here representing Autistics for Autistics. We’re a national autistic-led advocacy group. We formed in 2018 because we realized that in Canada it’s mostly non-autistic people who have been leading the autism policy discussion — policy about us, without us.
For decades, the Government of Canada has granted hundreds of millions in sole-source contracts to autism agencies with no RFPs — or requests for proposals — no competition, no follow-up and no assessment. The cheques get cut, and everyone attends the charity gala and claps when they break ground on the new home for autistic men on the edge of town. Did you know that more than 90% of Canadian federal housing funding in this sector still goes towards segregated group homes, even though in the U.S. it has been shown that a different model — supported independent living — is better for everyone? We’re hopeful today that this new framework will begin to bring a policy shift that keeps up with the changes in the rest of the world. Our government needs to pivot now from a charity perspective to a rights perspective.
Autistic people, like other disabled people, have rights. In fact, our rights are enshrined in The United Nations Convention on the Rights of Persons with Disabilities. In Chile, their congress has just approved article 26 into its new constitution, which states: “The State recognizes neurodiversity and neurodivergent people, their right to . . . autonomy and self-determination . . . .”
In the U.S., autistic-led groups are in direct dialogue with the Biden administration as part of its disability policy team. The Interagency Autism Coordination Committee, or IACC, is a diverse and rigorous group comprised of federal and public members, and it includes members of autistic-led groups.
Meanwhile, in Canada, autistic people are not even included right now in federal disability rights legislation; autism is in a policy silo. So far, Canadian policy has not been about solving our problems, it’s been framing autistic people as if we are the problem.
In the current draft of the framework, autism is called an impairing disorder, with challenges to employment and housing. Our first request is that these euphemisms be dropped and the word “disability” and “access barrier” be their replacements. Schools, workplaces and housing have the responsibility to change the environment to meet the needs of disabled people, including autistic people.
Our access-to-information requests revealed that over the past decade, none of the projects related to autism overseen by the Public Health Agency of Canada were subject to an RFP process. I give the example of the $10 million website that wasn’t put out to tender but, rather, was given to an autism-related company that is now having to do more assessments of it because the traffic on their site is so low. There are many other examples of these kinds of inefficient uses of funds, so our second request is that the framework and other legislation require a competitive funding environment, assess the return on investment for projects and require RFPs.
Our third request is that you add to the framework that the government needs to independently collect data. This includes assessing the rigour of autism research, which is very prone to detection bias, particularly autism research, and other methodological issues. The research needs to be assessed, and it needs to be independently assessed. I was glad to see a line item on data — item 2(2)(c) in the proposed legislation — but it’s also quite vague. Current policy is often based on biased or unreliable data provided by lobby groups. I would point to the interest group CASDA’s 2018 national needs survey, where only 2.4% of the survey participants were actually autistic. With respect, this type of data should not be informing policy. It’s up to the government to independently collect its own data. That’s happening in the U.S. through the IACC, and, of course, it’s happening in the U.K. through the standards council. We need a body like that in Canada to do that kind of work.
Like all disabled people, autistic Canadians should have a right to access, to communications such as AAC, to inclusive schools and workplaces, to health care and housing in the community. In conclusion, we ask that the framework includes language that enshrines these rights. Think of the Chilean constitution, acknowledging the rights of neurodiverse people, and think of our own government’s approach to other disabilities. Apply it here. We need rigorous policy focused on quality of life. It’s time for a paradigm shift. Thank you.
Vivian Ly, Co-Founder and Organizing Member, Autistics United Canada: Good afternoon, honourable senators, and thank you for the opportunity to speak before you today. My name is Vivian Ly. I’m a co-founder and organizing member of Autistics United Canada, an autistic-led collective representing hundreds of diverse autistic adults and youth across what is colonially known as Canada. I’m joining you from the unceded ancestral and traditional territories of the Musqueam, Squamish and Tsleil-Waututh nations as a settler actively occupying these lands with the intention of this acknowledgement to be only one part of the disruptive work needed to act towards reconciliation and decolonization in all that we do, including autism and disability supports and services. While our members at Autistics United Canada call for greater support for not just autistic people but all disabled and neurodivergent people living on these lands, we have concerns about this bill and the national autism strategy.
First, the bill defines autism through a deficit lens and not a strength-based one that affirms and recognizes neurodiversity. Autistic advocates with diverse support needs have long called for a paradigm shift towards neurodiversity. We oppose the tragedy narrative. We do not suffer from autism. That locates the blame on the autistic child or adult, and on our natural way of being. Instead, we in our family suffer from systemic ableism and a lack of access, acceptance and supports. There is a need for a neurodiversity-affirming, strengths-based human rights model of autism recognizing our full humanity, which is not reflected in the bill’s language.
Second, we reject the siloing of autism support when we need cross-disability supports and services, and universal, equitable access to financial security, basic needs, housing, employment, education and health care. Autistics United Canada is concerned about the direction these frameworks and strategies can take, creating only specialized and segregated institutions, as we’ve seen in the removal of flexible individualized funding and the creation of autism hubs in B.C., rather than enacting whole, transformational change in Canada’s systems of care through universal basic income, universal pharmacare, housing-first policies and full compliance with the UN Convention on the Rights of Persons with Disabilities.
There is also a very real concern among the autistic community — the community consisting of autistic people ourselves — that this bill and the national autism strategy would fund more coercive and harmful behavioural interventions, such as applied behavioural analysis — or ABA — over diverse neurodiversity-affirming supports. Self-reported accounts from autistic survivors of ABA and increasing research detail long-term trauma, experiences of abuse and resulting mental illness and suicidality. Policy-makers need to take survivors of ABA seriously and ensure that autistic children and adults alike have autonomy, self-determination and choice over the supports and services we receive.
What is our vision for support, then? Our vision for just systems of care prioritizes ending state-sanctioned poverty and violence against autistic people and otherwise neurodivergent and disabled people. We call on federal bodies to work alongside provincial and territorial governments to combat eugenics in research and policy, disrupt the school-to-institution pipeline and school-to-prison pipeline for all disabled youth, end restraints and seclusion in education and health care settings, commit to deinstitutionalization and stop building new segregated institutions, and instead create universal, equitable systems of support across the lifespan.
These supports include cross-disability, universal home- and community-based supports for independent and interdependent living, and assistive technology. The key for effective supports is ensuring disabled people’s autonomy and self-determination both by creating flexible choice for supports and ensuring all policies are co-created with autistic and otherwise disabled people ourselves. “Nothing about us without us” is not just a saying; it’s a call to action.
According to the UN CRPD, Canada has a duty to closely consult with and actively involve disabled people in policy-making. We understand that those most impacted by Canada’s systems of care, such as disabled, low-income, BIPOC, 2SLGBTQIA+, incarcerated and houseless people, and those with multiple intersections and with the most complex support needs, know it best. Presume our competence and listen to our expertise. While there have been some gains, autistic people are still often ignored and not consulted. We need policy-makers to work alongside us to transform systems of care to be equitable and just for all disabled people, not just autistics, and independently collect data on our needs for disaggregated demographics on disability, neurodivergence, gender, race and other social groups.
In summary, we call on you, honourable senators, to commit to policies that take a bold stance on neurodiversity, create transformational change in Canada’s systems of care through universal and cross-disability equitable supports and are accountable to those most directly impacted by autism policies: autistic people ourselves. Thank you very much.
The Chair: Thank you so much to both our witnesses. We will now proceed to questions from the senators. Let’s keep our questions to the subject of the bill. Time is limited and I don’t want to necessarily cut anyone off. Please keep your questions brief and direct them to both or one of the witnesses.
I also want to note Mx. Ly is using text-to-voice software and there will be a delay in hearing her answer.
Senator Bovey: Given the time constraints, I’m going to cede my time, if I may, to Senator Bernard, who will be posing the question on my behalf. Thank you.
Senator Bernard: Thank you, Senator Bovey. I want to say a very sincere thank you to Ms. Borden King and Mx. Ly for joining us today. I really appreciate hearing from you; we needed to have your voices at this table, so thank you for agreeing to come.
You both raised concerns we have heard from other people and that I share with regard to this bill, and that is around language.
I think Mx. Ly talked about the need to move from a charity model to a human rights model. Mx. Ly, you talked about the need to move from a deficit lens to a strengths-based lens. Could you give us your specific suggestions for how the bill’s language, particularly in the preamble, could be improved to speak more to that human-rights model and the strengths-based perspective in looking at the merits of this bill and what it attempts to achieve? Thank you.
Ms. Borden King: I think for example, I don’t see the word disability in the legislation, and I think that’s often forgotten. That is the older charity perspective that puts autism aside almost as though it’s not within the framework of disability. It’s really important to know that within the autistic community, and among parents and families and providers and professionals, it really is seen as a disability.
So when you call it an impairing disorder and all this other type of language, like Vivian said, it’s very pathologizing, very medicalized. It’s a problem. We really belong within the context of all disability legislation as members of a disabled group, and so any new legislation going forward needs to acknowledge disability and needs to acknowledge that people can’t get good housing and good jobs. People aren’t included in school. These are access issues just as they are an access issue for any disability.
The Chair: Mx. Ly had provided an answer to the question via the chat function in Zoom. I will ask that a procedural clerk here read the answer here and then it can be inserted into the transcript.
[Editor’s Note: Read by Andrea Mugny, a Procedural Clerk]
Vivian Ly: First, I agree with Anne that the language of disability, accessibility and barriers should be included rather than disordered or impaired.
The autistic and otherwise disabled community recognizes the social model of disability wherein environmental barriers interact with our “bodyminds.” We are disabled by society. I would further suggest that the language of neurodiversity and neurodivergence be included in the bill. We can certainly follow up with a detailed language review, as well.
We are glad to see identity-first language included in the bill.
The Chair: Thank you very much. Mx. Ly, I think I heard you say that you would be willing to provide some further reflections on the language, and should you choose to do so, please send them to the committee as soon as is possible. Thank you very much.
Senator Patterson: Thank you both for your very compelling presentations. I have a question for Mx. Ly and also for Ms. King.
Mx. Ly, you very clearly had concerns about how a federal framework would malign neurodivergent persons or continue to perpetuate a status quo such as segregated facilities that you have identified as unacceptable.
Since this is not a framework that we’re discussing today but the mechanism to create a framework, do you believe that ensuring that folks such as yourselves are included in the creation of the actual framework would address your concerns?
And if I may, to Ms. King, thank you for your contribution today. Again, keeping in mind that this bill only creates the mechanism to create the framework and is not the framework itself, do I understand that you believe that having a framework that brings transparency and accountability to how we approach future policies and programs affecting the neurodivergent community is desirable? Do you feel that a framework is useful?
Ms. Borden King: I think we feel mixed about the legislation because it does seem to be that autism is often siloed into special legislation which makes it appear to be like a distinct category from other disability rights protections. We have a lot of concerns with protection and rights not being applied as though autistic people are some special category outside of other disabilities.
On the other hand, if you were to draft this legislation and the legislation were to go through, and to include within it the concept that autistic people belong within disability rights and disability-related legislation as it’s newly written in Canada, and that within this framework you recognize, for example, that autism is a disability and that autistic people belong within that context, that would be helpful for the drafting of any future legislation or the revision of any future legislation. In that sense it could be very important and very powerful.
There are a few tweaks that would need to be made. We focus on the language because the language really represents how we are seen in policy and what we’re seen as and whether it is dehumanizing or segregating in and of itself. I hope that helps to answer your question.
Senator Patterson: If you have tweaks, Ms. King, please send them to us through the committee chair.
The Chair: Absolutely, and we will send you all the contact information. There was a question in the chat. We will make sure you have all the contact information in order to make your suggestions to us. Let me clarify again. Are we waiting for an answer from Mx. Ly?
Ms. Mugny: Yes. She’s in the middle of typing, Madam Chair, yes.
The Chair: Thank you.
Ms. Borden King: I would also add that the rights of non-speaking people extend as really a shared category of disability and so it’s something to consider as well.
But I will give the floor to Vivian now.
[Read by Ms. Mugny]
Vivian Ly: I believe a framework that is co-created with autistic people would partially address my concerns, especially if there are dedicated and accessible efforts to ensure that multiply marginalized autistics are actively involved, for example, autistic BIPOC people.
I have had poor experiences in the consultations around the national autism strategy where BIPOC autistics were excluded. It’s mixed for sure. I agree with Anne’s point that autistic rights need to be enshrined in disability rights. And policy written about us should be clear, so that it is integrated well into disability policy in Canada as a whole so that we are not segregated.
However, AUC is further concerned that there is a lack of comprehensive cross-disability supports. We need cross-disability policy further strengthened. Autistic people are multiply disabled. We need broad-ranging support, and this means not siloing support through institutions and autism-only programs. This means universal basic income, housing-first strategies and cross-disability support.
The Chair: Thank you very much.
Colleagues, we are under some time pressure. We must finish this panel by 5:05. For the first question, I believe it’s reasonable to go to Ms. King while Mx. Ly prepares her response.
Senator Poirier: Thank you to both witnesses for being with us today. I really appreciate it.
My first question is for Anne Borden King from Autistics for Autistics.
In a post in 2019, your organization opposed the national autism strategy and you explained that it was time for a cultural shift in the federal autism policy. In your opinion, would Bill S-203 signal the culture shift in the federal autism policy?
Furthermore, the same statement also said that autistics should be included in a disability policy, and you have been talking about that. Since 2019, have autistics been more involved in a disability policy? And do you see Bill S-203 being a solution, or even part of a solution to that problem?
If time permits, I have another question but, if not, I understand.
Ms. Borden King: Sure. There have been no efforts by the federal government, aside from inviting us to this, which is great. There have been few efforts to involve us in policy.
We were asked by the CAHS to consult, because they are talking about doing a national autism strategy which, like you said, we have opposed because we see it kind of as the product of a lobby group, and we’re not happy with the way that group has been serving our community.
So, yes, we remain active on an advocacy point. But other than this meeting here today, and CAHS, we are not getting calls from the federal government. We are really having to try to get ourselves to the federal government on our own.
Senator Poirier: Thank you.
The Chair: Please signal to us, Andrea, when Mx. Ly’s answer is ready to be read into the transcript.
[Read by Ms. Mugny]
Vivian Ly: Anne covered what I would say. For the purpose of time, we can move on.
The Chair: Thank you very much, Mx. Ly, for your patience with our procedures.
Senator Loffreda: Thank you to our panellists for being here. I will continue on the importance of language, which is extremely important, and you have stressed that.
Last week, we heard from a number of stakeholders who have a vested interest in this bill. One witness was Jonathan Lai from the Canadian Autism Spectrum Disorders Alliance. His organization has proposed amendments to Bill S-203. One such amendment was to change the word “awareness” for “acceptance” regarding a national public campaign.
He argued that the autistic community is not looking for awareness about a disorder but about acceptance from people who have more of a human rights-based lens on that and to prioritize the social and economic inclusion of autistic Canadians and their families.
I wonder if you agree with him and if you have any other amendments at this point that you might make to this bill to make it better.
Ms. Borden King: We don’t support the platform or the pillars of CASDA, the organization that Jonathan Lai is speaking on behalf of. We don’t support any of their pillars or their efforts.
However, the concept of autistic acceptance is a concept that we support. I hope that answers it.
Senator Loffreda: It does answer it, thank you.
The Chair: We will wait to hear from Mx. Ly on that important question.
[Read by Ms. Mugny]
Vivian Ly: We share concerns about CASDA.
However, the language of acceptance over awareness is something that did come out of the autistic community, which I am glad to support.
Senator Loffreda: Thank you.
The Chair: Thank you.
Senator Kutcher: Thank you to the witnesses for reminding us of the essential points that your testimony has raised. I strongly urge all of us on this committee to listen carefully to what you have said.
My question is to Ms. Borden King. I knew of your work prior to coming to the Senate, and your great attempts to navigate the confusing welter of pseudoscience and disinformation around the treatment of autism. Nothing in this bill addresses that important issue. Do you think the bill should address that issue and, if so, why?
Second, you have written extensively on this topic. Would you be willing to share some of what you have written with this committee so that we could be informed by that?
Ms. Borden King: I can definitely share what I’m writing. I am writing a book about it right now. I could write a paper and share it with the committee, maybe via email.
As far as addressing the question immediately, I do think that, as you said, the framework doesn’t address autism pseudoscience or health disinformation, and it really needs to.
You would need to make it up front right within there, because it is a very big problem that affects the health and safety of children and vulnerable adults across Canada. It has only gotten worse. As we know, health disinformation has only gotten worse since the COVID-19 pandemic; it tends to dwell within social media and the solution is a multi-pronged approach.
It’s important that within this legislation, the government commits to researching, investigating, combating and working interdepartmentally to deal with this problem. I would strongly support something like that being put into the legislation to get the ball rolling. It’s not happening here. There is not a lot of regulation or enforcement.
Children are at risk. We hear from social workers, family members and public guardians asking us what can be done to stop this, and we have very few ways to help them right now, because there needs to be a framework for addressing this issue. Thank you very much for the question. If you have any follow-up, let me know.
The Chair: Thank you, Ms. Borden King. We look forward to receiving your material. I’m not sure we can manage a book, but definitely a paper. We will now wait for Mx. Ly’s response to that question.
[Read by Ms. Mugny]
Vivian Ly: Absolutely. Pseudoscience and health disinformation have been problems from almost the very beginning of autism becoming a known way of being in the world. Ms. Borden King has done great work on this topic, and we have not had good progress in getting enforcement and prevention from regulating colleges and Health Canada.
I would encourage that there is also research on long-term impacts of therapies, in general, for autistic people. For example, there needs to be research done on the long-term impacts of therapy given how widespread opposition to applied behaviour analysis, or ABA, therapy is among autistic people. Current studies focus on immediate outcomes regarding target behaviour — often trying to normalize the autistic person, which goes against the values of celebrating differences and being inclusive — rather than determining their emotional long-term well-being and asking the autistic person themselves how they were impacted by the therapy. Thank you.
The Chair: Thank you.
Senator Lankin: My question is for Ms. Borden King. In your opening remarks, you spoke about your concern with services, supports and contracts being let single source without RFPs. I wonder if you could expand on that.
This is a topic Senator Kutcher and I have been talking about in relation to other matters, and it seems to be a matter of concern that we need to look at and understand. Could you expand on what you were saying and tell us what actions you are aware of being taken or that your organization has taken to draw attention to this procedural problem?
Ms. Borden King: We did connect with MP Matthew Green, and he was in touch with the Public Health Agency of Canada to talk to them because, like I said, we filed access-to-information requests. Of course, a lot of information is on the BuyAndSell.gc.ca website. You can see that all the money is discretionary and none is being bid on or put through an RFP process or being assessed, and there is no transparency.
What it looks like to someone outside of politics is that organizations are getting the money but no one knows what they are doing and how good of a job they are doing. It’s not competitive. It’s problematic, because it’s dominated by a few large service organizations. They are service organizations that, in many people’s view, including ours, are not focused properly on quality of life for autistic people. These organizations are big, old and established, and sometimes based on segregation, which we don’t support. When we see this money going to certain organizations and projects — I could list examples, but we’re low on time. I can certainly send them. You can also see them on the BuyAndSell.gc.ca website — we can see the direction they are going with this. This is not a direction we need to go in.
We need much more rigour. We need to look to best practices in the United States and the U.K. for how they bid and come up with projects, collect data and assess — as Vivian was saying, they are doing an assessment at the Standards Institution in the U.K. right now of autism interventions and how well they are working. It’s coming independently from the government, because the government is writing the cheques, and the government has a responsibility to serve the public. Right now, that isn’t happening. We’ve been doing press about it, and we spoke to MP Green. Interestingly, as far as I’ve heard, PHAC never got back to MP Green about the issue. We reached out directly to PHAC as well and didn’t get anywhere. That was two years ago. We reached out repeatedly, but nothing changed. That’s why it’s important to put it within a framework and to not allow this massive amount of money to be handed out in a discretionary manner the way it is right now. It is very concerning. Thank you.
[Read by Ms. Mugny]
Vivian Ly: I would further add that there isn’t a mechanism for autistic people to be part of the independent oversight for these funding processes and to evaluate the effectiveness of these organizations in providing support for us.
The Chair: Thank you.
Senator Petitclerc: My question is a little about language but with a different perspective. You’ve talked about the concept of “nothing about us without us,” and I agree it’s something that we hear a lot, but how much it actually happens is a completely different conversation.
With the understanding that this is not the framework but a bill to set up and develop the framework, nowhere in the bill is it very explicit that individuals living on the spectrum should be involved. There are parts on consultation, and one part says the consultation has to be with relevant stakeholders and representatives from medical research advocacy communities, but it’s not explicit. Do you think it would be relevant for it to explicitly say that the framework has to be developed with individuals on the spectrum?
Ms. Borden King: Consultation has to be done in a responsible and strategic way. For example, sometimes a government will “consult” with autistic people, and what it means is they brought three people in and said, “Tell us your story.” We get asked to tell our story a lot. You feel like a self-narrating zoo exhibit. I’m one person with one story. I would suggest broadening it out.
Our groups represent a diverse spectrum across Canada. AUC is a national group; at Autistics for Autistics, we only have Ontario and Atlantic chapters, but they have chapters everywhere. They have regional representation, and both they and we have cultural representation. We’re representeing 20% of autistic people who are non-speaking. It’s important to have that kind of representation. When the representation occurs, it’s important for it to be done in the best way possible.
In terms of data collection, a census-type data collection might be good. The problem is that when the government does that, they tend to outsource the labour to a not-for-profit, and the not-for-profit does their own census. Of course, that group has their own interest, because they are an interest group, so it is something that the government needs to independently take upon itself to do this type of census, to reach out and to be diverse in the consultation. Thank you very much for the consideration. We’re hopeful that could happen.
The Chair: Thank you very much, Ms. Borden King, for your response to that question.
[Read by Ms. Mugny]
Vivian Ly: I have enormous worry about consultations being tokenistic and excluding diverse and multiply marginalized autistics. There needs to be equitable representation, not just with autistic people, but autistic people living at multiple intersections of systemic discrimination and oppression, non-speaking autistic people and autistic people with complex support needs.
The UN Committee on the Rights of Persons with Disabilities’ general comment Number 7 from 2018 clarifies the state’s responsibility to consult and involve disabled people through their representative organizations and clarifies that this means organizations by and for disabled people, not parent organizations and not service providers.
The Chair: Thank you very much, Mx. Ly.
Senator Dasko: Ms. Borden King, I want to follow up on your research. You mentioned the figure of 2.4% as the incidence figure and you said it was suspect. I want to follow up on that. Why do you think that figure is wrong?
Ms. Borden King: When CASDA did a survey, only 2.4% of the people in their National Needs Assessment Survey were autistic. Everyone else were service providers, parents or autism-related companies or stakeholders. It’s not a very good measure of the needs of autistic people when 97% of the people that were surveyed were not autistic themselves.
Senator Dasko: I understand.
[Read by Ms. Mugny]
Vivian Ly: It’s not a good representation of “nothing about us without us.”
Senator Dasko: That’s an excellent comment. I want to step back. To me, the essence of the bill is the framework measures in the bill. Ms. Borden King, you’ve mentioned two of those that you would change. There are six altogether. Would you see the need to change all six of the framework measures in the bill as they currently exist? And if so much in this bill needs to be changed, do you think it should be tossed out entirely and start from scratch?
Ms. Borden King: That last part is up to you.
I didn’t want to get too far into the weeds, but there are definitely concerns about how it all could get done — for example, the education component and the website component — and we could certainly send the list of our own strategic comments and recommendations for ways to work at all of those things. I just didn’t want to go point by point because of a lack of time. We kind of stuck with the more important points, but we could send you a quick little paper about it, if you’d like.
Senator Dasko: Yes, and if anything is left out, as well; I think you’ve made some comments on it.
The Chair: I want to get Mx. Ly on the question Senator Dasko asked. If you have so many concerns about this bill, should we simply put it aside?
[Read by Ms. Mugny]
Vivian Ly: The research component could easily go awry. We have seen widespread protests to Spectrum 10K in the U.K. because of the eugenics ramifications. There’s a similar research project in Quebec. I personally think it would need a lot of revisions to ensure there are preventative mechanisms in place. It would depend on how well the revisions go, and like Anne said, it would be up to this committee to ultimately decide.
Senator Bernard: This is such an important question, and it’s for Mx. Ly. You have raised the issue of the absence of attention to BIPOC several times, and I wanted to spotlight that and to ask you if you feel this bill could be strengthened by specifically talking about that intersectionality and paying particular attention to that. Thank you.
[Read by Ms. Mugny]
Vivian Ly: Yes, it would, and also other intersections. Autistic people are — I’m not sure about the statistic — but six times, if I remember correctly, more likely to be LGBT. Also, based on AUC’s survey, 25% are living under the poverty line. Thank you.
The Chair: Thank you, I think we’re done. I apologize, Mx. Ly; I can’t see the screen from the spot I’m sitting. Thank you, Ms. King and Mx. Ly, for giving us your time, your wisdom, your experience and your perspectives. You’ve enriched our discussion and our knowledge of the issue immeasurably.
Our final witnesses are Dr. Mackenzie Salt, CIHR Postdoctoral Health System Impact Fellow at McMaster University; and Dr. Jean-François Lemay, Developmental Pediatrician and Section Chief Developmental Pediatrics, Alberta Children’s Hospital.
Mackenzie Salt, CIHR Postdoctoral Health System Impact Fellow, McMaster University, as an individual: Good afternoon, honourable senators. I’m an autistic autism researcher with the McMaster Autism Research Team. My fellowship time is split between McMaster University and the Canadian Autism Spectrum Disorder Alliance. I’m also editor-in-chief of the Canadian Journal of Autism Equity, a journal that seeks to amplify autistic voices and bring them to the attention of researchers and policy-makers. I’m honoured to speak to you today from my experience as an autistic adult and advocate, as well as from my expertise as a researcher focusing on autism in adulthood.
I was diagnosed with a form of autism when I was 13 years old. My research has focused on filling gaps in the research literature around autistic adults and also gathering the perspectives of autistic adults to help guide future research into areas that are important to them, to inform policies that affect them and to challenge existing research practices and perceptions about autism more generally.
Autism is in the unfortunate position of having been highly politicized in this country. Politicians are disturbingly comfortable with the notion of scrapping autism programs completely and starting from scratch. This has indeed happened after changes in government not only at the federal level, but also within our provinces and territories. This approach has significant, life-altering consequences.
When you buy a house, you don’t tear it down, you make some changes to help it fit your life and build on the established foundation. This creates a natural opportunity for organic transitions, seeing older programs be updated with new initiatives based on evolving research and available information. The current political approach has only served to further divide the autism community and has established a two-tier system: Those with the means to pay for private autism services can have them, while those who cannot are left behind. This is not new.
Before being diagnosed with autism, I had trouble with the physical act of writing while I was attending school. My parents made sacrifices so that I could get a functional occupational therapy assessment and have some assistive technology that helped me continue through school. They also had to take time off work to attend school board meetings to advocate so that I could use the assistive technology in the classroom. That was over 20 years ago, before autism support services had been implemented in my home province of Ontario.
While my parents certainly made many sacrifices, I also recognize that I was very privileged to be in the position where my parents were able to afford those things while many families who care for autistic children and adults cannot afford any support services, let alone a diagnosis needed to access said services. In fact, there are very few publicly funded services across Canada for autistic adults at all. This is unacceptable, as autistic children grow up to be autistic adults and they may still need support.
I am grateful to be appearing before this Senate committee during the second week of remarks, as it allows me the opportunity to amplify some of the important points that have already been made. I wholeheartedly support the remarks made by Paul Finch regarding section 2(3) referencing who needs to be consulted. Finch stated that autistic people must be directly engaged, not just advocacy organizations representing them.
Autism is, in itself, an extremely heterogeneous condition, and it is worth emphasizing that the strategy that comes out of the framework proposed in this bill needs to acknowledge that. I recognize that I’m privileged to be able to speak to you today, when there are many people who do not have such an opportunity. The autistic community is incredibly diverse such that I believe that no one organization can speak for the entire spectrum. In the formation of the strategy that will come out of the framework set forth in this bill, we need to hear those diverse voices. I can only speak for myself and my experience, which do not represent the entire autism spectrum. I cannot speak for autistic women, non-speaking autistics, autistics of colour or Indigenous autistics. This current Senate process has shown how we can come together and foster discussion amongst those with diverse perspectives. The strategy that comes out of the framework set forth by this bill must acknowledge that diversity and understand that different people have different needs.
In closing, I wholeheartedly support this bill. It will establish timelines and accountability for action and real change. It will spur federal leadership in addressing the inequities of our patchwork of our provincial and territorial autism services. Thank you for your time and attention, honourable senators. I would be happy to answer any questions that you may have.
The Chair: Thank you very much, Dr. Salt.
Jean-François Lemay, Developmental Pediatrician and Section Chief Developmental Pediatrics, Alberta Children’s Hospital, as an individual: Thank you, senators, I’m honoured to speak to you today on the federal framework on autism during your Senate discussion. I have dedicated 33 years of my life as a developmental pediatrician to autism, and tomorrow will be my last clinical day in my career. Please know that I will be using the term autism instead of autism spectrum disorder to make this address easier to follow.
Each autistic individual is unique, leading to complexity in terms of diagnosis. We know that early diagnosis, hopefully done before the age of four, combined with early intervention, is critical and can improve long-term outcomes. Currently, autism affects 2% of Canadian children according to 2019 data, and 50% of those are diagnosed after the age of five. Unfortunately, autism is a lifelong condition that leads to less optimal health, lower life expectancy, reduced employment rates, more mental health issues and requires more special needs or more education needs when compared with the general population.
In addressing you today, senators, I want to highlight the critical roles that parents and families have played in drawing stakeholders together to discuss autism. They have worked hard establishing advocacy up to the national level to ensure that their children have the prospect of realizing what all Canadian parents dream of for their kids: be in good health, learn, be socially engaged and have a good job — in sum, being meaningful contributors to Canadian society.
So why do we need a Canadian or national strategy for autism? Significant achievement has been realized from childhood to late adulthood with the establishment of a national autism spectrum disorder policy in the U.K. and Australia. In Canada, we do not yet have in place a national strategy for autism, but I believe we will have one soon.
Individuals with autism are now aging throughout our Canadian society, and we’re not fully prepared. Even with the Canadian constitutional structure of health, education and social services, there continues to be a large variation in gaps in services and supports across our country. Consequently, it is often difficult for families and persons with autism to navigate our complex system, to find the appropriate services, support and opportunities in a timely manner.
Senators, I support the key focus area included in Bill S-203. But we should not forget the following: We must provide timely diagnosis and early intervention in the person’s life, enabling those diagnosed with autism and their families to get the right help at the right time.
Consider this small but critical example. Referral practice, diagnostic evaluation and acceptable standards for wait times post-services for individuals with autism are not consistent across Canada. In our medical centre, as a commitment to family-centred care, we have successfully implemented standardized diagnostic pathways to reduce wait times from 18 months to less than 45 days for children under the age of 4 for a possible diagnosis of autism. Presently, there are clearly system issues, but we’re blessed to have an abundance of passion, knowledge and expertise in Canada across health care providers, educators, social workers, mental health practitioners, employers and families. What we now need is a structure to assemble these stakeholders to help put forth a plan of action.
Senators, through a national policy — and maybe through this bill — we will have the ability to develop system-level strategies through the coordinated effort of stakeholders, which includes families from across Canada. This bill will serve as a springboard to help create the space to codesign and develop new, innovative solutions leveraging Canadian and international knowledge. A national strategy will draw attention to the lifelong needs of people with autism because their needs are ongoing and do not cease after childhood.
To further focus our effort, a keystone element of this bill should include a national data strategy covering the lifespan of an autistic individual. What is measured will be managed.
In summary, senators, let me conclude with the following points I’ve tallied together with a valued colleague of mine at the Alberta Children’s Hospital, Shauna Langenberger.
First, we need to better educate Canadians about autism, which is a critical first step toward fostering improved inclusivity within our society of those individuals with autism. We need to support individuals with autism, families and autistic agencies and incorporate their voices at all levels. With awareness and acceptance, we can more effectively support best practices in creating a positive, welcoming and practical environment for individuals with autism to realize improvement in mental and physical health, education, lifestyle, employment and life expectancy.
Third, we need national standards to ensure access to screening and diagnosis, early intervention and appropriate services coast to coast. This has been my bible for the last 33 years. This will need to come with a commitment to improve financial resources for individuals and families, and to ensure that finances are not the limiting factor to appropriate care and support.
Fourth, through a national approach, we will be better positioned to leverage existing research and focus future research to hasten advancement in autism knowledge and care.
Finally, the national data strategy will track our progress, document our successes, measure outcomes, identify future opportunity for improvement and contribute to establishing a national standard of care with fewer regional differences in our country.
Simply put, I’ve been finding this for 32 years. We need a Canadian national strategy for autism spectrum disorder. By doing so, I am confident we can bring positive change to the lives of individuals with autism and their families. Bill S-203 provides the framework needed to implement these changes, perhaps with some modifications, but I think we have the framework. You will decide.
Senators, I thank you for your support and dedication to this important cause and for the opportunity to speak to you today. Lastly, I’m proud to acknowledge that April 2, 2022, is World Autism Awareness Day.
Honourable senators, I thank you for your support and dedication to this important cause, and for the opportunity to speak to you today. Lastly, I am proud to acknowledge April 2, 2022, as World Autism Day.
The Chair: Thank you very much to both our witnesses. That was excellent testimony. We’ll now go to questions from senators. As always, I want to ask senators to be brief in their questions and to direct your questions to a particular witness.
Senator Bovey: I want to thank the speakers very much. It’s been a fascinating and a very important afternoon. As I did in the first panel, I will cede my time to Senator Bernard, who works in this field. Thank you.
Senator Bernard: Besides working in this field, in the interest of full disclosure, I will tell you that my youngest grandson, who is now 10, is autistic. I have become one of many advocates. My work as a social worker largely informed my work over the years, but more directly in the past ten years in working with my grandson Gavin.
I have two questions. First, Mr. Salt talked about a two-tiered system, and we’ve heard that from other witnesses as well. One of the groups that’s been locked outside a lot of the work are members of racialized or otherwise marginalized communities. Part of that is tied to the stigma and discrimination that autistic people experience.
Are there ways that you believe this bill could be strengthened to address those realities in terms of stigma, discrimination and intersectionality?
My second question would be for Dr. Lemay. You mentioned we’re about to recognize World Autism Awareness Day. In Nova Scotia we celebrate April as Autism Acceptance Month. Are there things that this framework could do to help us move beyond awareness to acceptance and action? Thank you both.
Mr. Salt: Thank you very much for the question, Senator Bernard. It’s a great question. This framework provides a consultation requirement, and it involves a lot of transparency and accountability. The consultations that are done need to include those diverse voices that I spoke about.
There are organizations for autistic people who are also in racialized groups, for example, the South Asian Autism Awareness Centre and other groups that can be consulted that way. I think we need to make sure that whatever strategy comes out of this is done with the consultation with those diverse groups, and we should make sure to consult as widely as possible.
Dr. Lemay: Briefly, it is time, if we have a national policy to say very honestly that for many years, everybody has been working in silos, and we’ve been doing lots of good work, but we’re not necessarily talking to each other. It’s time that we’re sharing. Besides the awareness and acceptance and everything, the sharing will be important.
When I did medical school, I never heard of the word autism. It was only when I finished my pediatric training that I finally heard the word. What will be important is that we need to somewhat realize that we need to amalgamate everything that we’ve been doing so well in different provinces and try to put it together.
I don’t know if we call this education. I don’t know if we call this awareness, but I think it’s time that we started sharing more amongst all of those doing research, even though we’re trying very hard, but there’s still so much discrepancy in services received in this country. We need to make sure everybody in Canada is receiving the same type of services.
The Chair: Thank you, Dr. Lemay.
Senator Poirier: I have one question for Dr. Salt. One of the measures in the federal framework on autism spectrum disorder is to provide a national research network to promote research and improve data collection on autism spectrum disorder. Could you describe what impact this measure would have in researching on autism spectrum disorder, and what would the long-term impact be on the autistic?
Mr. Salt: Thank you very much for your question. It’s incredibly important to create a national research data network. Right now there are several centres around the country that are doing some great autism research work; however, those are centred in areas where there are strong academic communities, university towns and also large urban centres.
In doing that, you have the potential to miss out on perspectives of people who may not live in those centres, those who may not have the privilege to be able to commute to take part in that sort of research. Having a national perspective and a national data network where people can share data can help address some of those by going into those other communities, by expanding, rather than just taking convenience samples of parts of the population who happen to be near the university, the clinic or whatever the research centre happens to be.
Part of the work that I’m involved in is gathering autistic perspectives. One of the things I want to do is gather perspectives from as wide a group as possible, especially when you are looking at autistic adults, for which research is sorely lacking.
Senator Patterson: Thank you both for your testimony. Dr. Salt, you endorsed Mr. Finch’s recommendation that autistic people must be directly engaged, and you said you wholeheartedly support the bill. I hope you have had a chance to look at the bill, but I’m looking at section 2(3)(c). It says that in developing the federal framework, the minister must consult with “ . . . relevant stakeholders, including representatives from the medical, research and advocacy communities that focus on autism spectrum disorder.”
Are you satisfied that the bill will require the engagement of autistic people based on that section in particular?
Mr. Salt: Thank you for your question. The first thing you mentioned was “relevant stakeholders.” I don’t believe the list that is there is exhaustive. I believe there is the opportunity to consult with many more beyond that and that those are just examples. I would encourage that this be the interpretation.
That said, if it were to be added that autistic people be consulted as well, I would not feel negatively about that. However, as written it says “relevant stakeholders,” and I don’t believe that the list is exhaustive in and of itself. Thank you.
Senator Patterson: Dr. Lemay, thank you for your work and your career.
I think I heard from you that an evidence-based national approach is long overdue. Would you then advocate for the swift passage of this bill in order to ensure we can get to the hard work of consulting widely and gathering the data necessary as is spelled out in section 2(2)(c) for national standards and — as you described it — a national approach?
Dr. Lemay: To answer your question, I will support this absolutely. I could live with this point that you just listed. I think it’s time to move on.
Like I said, I think the framework is a good springboard. We just need to make sure we continue on with the same kinds of great ideas. I would also like to support what Dr. Salt just mentioned about the relevant stakeholders. I would give exactly the same answer as Dr. Salt for this specific point.
Senator Loffreda: Thank you.
Dr. Salt, you mentioned the lack of funded services for autistic adults across Canada, and you mentioned a few services that would be essential. What other services, or which services, would you recommend and prioritize in Canada if we could swiftly and quickly implement them?
Dr. Lemay, you talked about timely diagnosis and early intervention being problems, as well as a lack of consistency across Canada. I do like the key practices you did share, like a national data strategy. I always agree that what you measure improves. My question is this: What has hindered the adoption of these strategies in the past, and how could we improve going forward and ascertain that they are adopted in due time, quickly and swiftly, in order to help the autistic community?
Mr. Salt: Thank you very much for the question. It’s a very important question. The way we look at services and what services we need depends highly on the individual. I think that financial support is a significant one. In terms of employment supports and housing, those are very significant overall. I also think mental health services are very important.
While we do have existing mental health services under provincial insurance plans, wait times and specialized mental health services are not always available. Those are barriers to those things being available to the greater autistic community. This is not an exhaustive list. You would have to talk to many more autistic people to find out what their priority needs are.
However, I think one of the larger priority needs is the financial support because there are significant barriers to receiving a diagnosis. We have long wait times, as Dr. Lemay mentioned, and there’s the cost of diagnosis, which is not always covered by private insurance. It’s not necessarily covered under public insurance everywhere. I think financial support in a variety of ways is one of the most significant measures you could deal with quickly.
It’s hard to go after anything too quickly. You don’t want to just scrap everything and try something new, which is what I was mentioning in my opening remarks. You want to make sure that you are supporting the greatest number of people possible for their individual needs.
Dr. Lemay: I just want to add one more thing about adults. When we have great stories to tell, I say we should celebrate. In Calgary, we have The Ability Hub, which is an important resource centre for people from the age of 13 to 35. Certainly, this is something that is worth looking at, and it has been very useful.
To answer your questions, I will try to make it very short. I think every centre in Canada has the same commitment and intent. Everyone wants to see these kids as soon as possible. Is it possible? No. We published a paper about it, we presented it and we have been awarded a national award for what we have done to reduce the wait times for kids to be seen, but it’s not easy. Every centre has their own issues. It’s demanding and it’s related to a hospital-based system plus provincial. But I will say to you that if you ask everyone in Canada who is doing early diagnosis assessment in children, everyone will say that they are trying their very best. I believe this 100%. But we need more tools and more support. Maybe it’s time for everybody to sit down, even though we try.
We just did a survey asking, “How are you doing with the referral you’re getting? Are you that much behind because of COVID?” Everyone says, ”Yes, it has been very difficult.” Everybody is in catch-up mode right now, even early intervention services. In my province, most services have been stopped for many months. Parents are dealing with the anxiety that the kids were having. Try to explain how to wear a mask when the parents are not having any kind of support. Schools are closed. You can imagine that we have some recovery to be done. I probably need half a morning to explain the logistics, but I think everybody is well committed. They have the intent at the right place.
Senator Kutcher: Thank you very much to our witnesses. Today, we have heard about the urgent need for diagnostic and treatment services and mental health services and, earlier today, about housing and other supports. The current bill gives us six items that the framework must address. Do you agree that these are the most important items the framework must address? If not, what items do you think the framework must address and should be noted in this bill? Finally, if it’s difficult to get those right now, would you be willing to send us a note itemizing what you think are these items that should be there? Thank you.
Dr. Lemay: It’s very useful to read what the other countries like the U.K. and Australia have been doing. Also, maybe the framework could be more specific about improving autistic children’s and young people’s access to education and supporting positive transitions into adulthood. My wife is a pediatric endocrinologist, so when she is transferring patients with diabetes from pediatric to adult care, it’s very difficult.
I would say the same stuff applies to autism. I would like this to be included more specifically. I think we have to use wording that mentions that we’re tackling health care inequalities for autistic people. I think you are covering basically what we are reading in the Australian national health policy and even the U.K. Maybe one or two things could be added, but I will let Dr. Salt add something. I think the framework is there. I think there is a solid foundation there, but maybe it just needs a few tweaks or modifications of the wording.
Mr. Salt: I will second what Dr. Lemay said and add, once again, that I don’t believe that the phrasing is exclusionary. There is nothing that says more cannot be done after the government does its consultations as required by this bill.
It’s difficult to gauge what’s being done but we want to make sure we’re consistent, and this bill provides a set of standards, which, as Dr. Lemay mentioned, is consistent with Australia and other national autism strategies. I don’t believe that list is exhaustive. I think that the government consultation, which is mandated by this bill, may uncover other things. It would be in the best interest of the government, in receiving those consultations, to look at all the different measures, not just the six provided here. Again, I don’t believe this list is exhaustive.
Dr. Lemay: I would add that building the right supports, at the right place and at the right time is basically what could be added. I totally agree with Dr. Salt’s comments.
Senator Moodie: Thank you both, Dr. Salt and Dr. Lemay. I want to dig a little bit deeper on Senator Kutcher’s question. The whole idea of this framework being a solid start is something that you have both mentioned today and committed to, but you’ve also talked about some of the key elements of the challenges — the lack of access for autistic children in the early stages of realizing that there is a potential problem and looking for a diagnosis phase.
As you talked about access to timely screening and diagnosis, do you think that is one element of the framework that is missing? Dr. Lemay, you work in this space, as I do as a pediatrician, and I think you’re probably aware of the limitations, but I would also like to hear from Dr. Salt, who spoke about his personal experience.
Dr. Lemay: If you asked me, Senator Moodie, if I want to see this in bold fonts and everything in the framework, yes. But I know eventually it will be added. We will add it, I’m pretty sure.
I was talking to my wife about the number of kids I have seen over the last 33 years, and we’re talking about thousands of kids with autism. I’m proud we are moving forward. My message today is that we have worked so hard. We’re getting close to a national policy. I want to see it while I’m still alive. I want to see it in the next two or three years. I don’t want this framework to be scrapped. This is my personal opinion. We have a good foundation; we just need to continue moving with it. I will let Dr. Salt talk about it, but I’m saying this from a pediatrician’s point of view. I’m very proud to see that we are talking about this today, and I would like to thank the senators who are committed and have dedicated lots of time to it.
Mr. Salt: Thank you, Dr. Lemay, and thank you, senator. I don’t have too much to add. I think Dr. Lemay pretty much covered it. From my work in working with autistic adults — and I’m not a clinician, I’m a researcher — and from the research that I have done, we have autistic adults, especially those who have been diagnosed late or they may self-identify as autistic but they cannot get a diagnosis because of a lack of funds. Financial support is one of the measures provided by this bill. There are other logistical challenges, as Dr. Lemay has previously mentioned. Section 2(2)(a) does address at least one of the obstacles there.
Senator Lankin: My question is for both doctors and builds on the questions raised by Senator Kutcher and Senator Moodie. Here’s my disclaimer: I’m not a doctor, so perhaps you might respond to me knowing that I’m a layperson.
I want to follow up on the issue of access to timely screening and options that would lead to a potential diagnosis. It seems to me that, as I look at the bill, financial support for families, including the method for that and a range of other things don’t really address an examination of where there are significant gaps in access to services — not just geographic or regional, but the amount of services — which gets at the opportunity for families to bring their children in for screening and potential diagnosis.
Could you speak to that and just give us a bit of information about what those gaps are? You’re very trusting in terms of your comments that you think are not exclusionary, and that it will be included. Is it worth us spending time trying to ensure that we include references to access to those screenings and diagnosis supports that families and individuals on the spectrum require?
Dr. Lemay: As I said at the end of my speech, we need to have standards to ensure thorough screening, diagnosis, early intervention and appropriate services are correctly given coast-to-coast.
What we have changed recently — I’ll just take 20 seconds here — is that when we get a referral, when we phone the parents to give them their appointment, we are telling them that they will have to attend two or three hours of an educational session about autism and let us know at the end whether they feel their son or daughter has the characteristics that we have discussed and if they want to continue to the screening and assessment process, because we have screening, diagnostics, etc. What we find is that 97% of all the parents are willing, after following this educational opportunity, to continue the process. And the other 3%, we’re working with them. We’re supporting them. In the end, almost all of them are getting through the process, but it’s taking more time. We have to accept this.
Yes, I would like this to be included in the project. I know we’re on the right track. I’m an optimistic person by nature. I’m a very positive person. I’ve been fighting and working hard to make sure that people have access to screening and diagnosis. Yes, we have a lot of hurdles, but I think by having a framework like we have right now, I’m positive that, with your future conversations and discussions, that this will be added. You will need to hear what we have done correctly and what we’re still struggling with. Yes, we’re struggling. What we are doing in Canada is not perfect, but we should be proud of what we’re doing on a daily basis with that population. It’s not perfect — I want to be clear — but as I said, we have an abundance of passion for so many people.
To answer your question, yes. Maybe if it is written more — I’m trying to be diplomatic — I will let you decide what words will be included. But I think you can read between the lines.
Mr. Salt: Dr. Lemay pretty much covered it.
I do want to mention my concern about this. There is an old joke that goes, “How do you eat an elephant?” The answer is, “one bite at a time.” It has original Senate report saying that something needs to be done, so I want to make sure that something is done, as Dr. Lemay opines, “within his lifetime.” I want to make sure that something happens quickly, because the longer we delay, the more people are set back and the more people are disadvantaged.
The Chair: Thank you so much.
Wonder of wonders, we found a bit of time for me to ask a question. I want to draw your attention away from the substantive sections of the bill and the clauses to the preamble, which signals aspiration and intent.
Before your panel, we heard from members of the autism community, and they felt strongly about the language in the preamble that describes autism as a lifelong neurodevelopmental disorder. It talks about impairment. In their view, this language takes a deficit-based approach as opposed to an asset-based one. They described it as being dehumanizing and segregating. I wonder if you both, Dr. Salt and Dr. Lemay, have a response to that rather visceral reaction?
Mr. Salt: In this conversation and on this topic, I wear a number of hats, as I previously said. I can definitely see the perspective that the term “impairment” is a negative one. Neurodevelopmental disorder is the clinical distinction, and if we’re looking to change that language, we need to look wider than just this bill.
There are some language changes that could be identified. I understand that previous people who have testified are submitting resources to that effect. I don’t think I have anything to add to what they have to say. While we don’t want to use a lot of these negative terms, we need to use terms that our society has defined for these roles. That may need to be a broader discussion with overall society rather than just this bill. It doesn’t mean this bill can’t be the start of that, but it is part of a much larger discussion. I fully acknowledge that there could be some problematic language in the preamble, and I’m confident that can be fixed.
Dr. Lemay: I agree with Dr. Salt. I know the DSM–5 uses the word “deficit,” but on a day-to-day basis, for the last 33 years, I’ve never used the word “deficit” when talking to parents. I try to use words like strengths, challenges, points to be improved or points to be working on. I always start by asking parents: What are the gains you’ve seen in the last year with your child? What are the challenges? Those are the words parents understand. If you talk about deficits, it’s stressful for parents when you’re talking about their child. You have to use words they understand on a daily basis and don’t have a connotation that could be misinterpreted.
I support what Dr. Salt said. I’m completely in agreement.
The Chair: Thank you so much to both doctors for their expert testimony. It has helped us a great deal. Dr. Lemay, congratulations on your long years of service. I have no idea what you are planning to do next, but I hope whatever is on the horizon for you is wonderful. Dr. Salt, thank you as well.
(The committee continued in camera.)