Hon. Dennis Glen Patterson: Honourable senators, I rise today to speak to Bill S-203, An Act respecting a federal framework on autism spectrum disorder.

I’d like to begin today by telling senators the story of William McLaren. I am thankful to his mom, Claudine, who works for me as my director of parliamentary affairs, for giving me permission to share this with you all.

Will was born fully blind due to a relatively rare diagnosis that is not preventable and very hard to detect. Basically, his optic nerves and the part of his brain that they would connect to did not fully form.

As a result of his blindness, Will was followed by many different services at the Ottawa Children’s Treatment Centre and it was there, at the age of 4, that it was first suggested Will might be autistic. However, it’s hard to make a diagnosis at such an early age. It also requires a certain expertise to make such a diagnosis in a blind child because so-called blindisms are very similar to indicators of autism such as texture aversions, not making eye contact when you speak to others, and getting overstimulated easily.

His parents decided to wait until he was older to explore the potential autism further but were hyper-aware of potential indicators and were able to work autism-intervention strategies into their son’s individual education plan, or IEP.

Later, at the age of 7, it became apparent that it was time to revisit this possibility. The wait time, however, for a free assessment by the school board was years long and there was no expertise within the school board to make a diagnosis of a blind child. Thankfully, Will’s parents were fortunate enough to have the resources to find a private psychologist who was able to diagnose him.

Even so, with COVID restrictions for external professionals entering schools, the assessment has taken over a year to complete and cost $2,500. While they are still awaiting the final assessment report, they and the school have been told to proceed with an unofficial diagnosis until all the paperwork could be completed. Thanks to the excellent support of his teachers, education assistants, principal and vice principal at Carleton Heights Public School, he has been able to flourish.

Colleagues, this story is significant because, while it is a good news story for Will, there are many instances where this story could have taken a tragic turn for many others. It’s possible that parents would not have received any early indication of autism and not known what to look out for as their child grew and developed. Parents may not have had the advocacy skills required to put in place a comprehensive IEP or may have faced resistance within the school to implementing autism intervention strategies ahead of a final diagnosis.

Other potential barriers to accessing services include the $2,500 private assessment fee, which may have prevented many families from jumping the long queue to access services. Geographical considerations may have limited the amount, type or quality of services available. This is particularly true for families with children who are multiply involved, that is, who have two or more diagnoses, because they would often require access to specialized services and professionals.

What Bill S-203 would do is require the government to create a national framework on autism spectrum disorder based on consultations with various stakeholders. While the bill lists several points for inclusion in the framework and outlines many of the stakeholders that should be included in the consultation process, it is important to note that amendments I proposed, and that were subsequently accepted, clearly noted that these lists under clauses 2 and 3 are not exhaustive. I agree with Senator Housakos’ approach of not being overly prescriptive so that the minister has flexibility to decide what issues and which stakeholders should be included.

I feel it important to underscore the fact that this is not the framework, this is the mechanism to create it. The bill also sets out accountability measures to ensure that the framework is created within 18 months of Royal Assent. It also requires a review after five years of that framework being tabled to study the efficacy of those measures that had been implemented and to get a response as to why other measures may not have been implemented since the framework’s tabling.

It is my hope that senators see the importance of this bill and the need to move it through our chamber expeditiously so that we can make this a law and begin the hard work of addressing the gaps and barriers that families and neurodivergent persons face every day, as I have described in Will’s case.

We heard in committee how previous attempts to create a similar framework have failed, so I want to congratulate Senator Housakos as sponsor and Senator Loffreda who, though given the title of critic, has been very supportive of this bill. I know that this topic is personal for many senators in this chamber and it is my sincere hope that this bill will succeed where many other efforts have failed. The next step to that goal is passing this bill in our chamber — hopefully today.

Thank you, honourable senators. Qujannamiik.

Hon. Tony Loffreda: Honourable senators, I rise today at third reading to speak to Bill S-203, an Act respecting a federal framework on autism spectrum disorder.

At the outset, I want to thank our colleagues who spoke to the bill and those who participated in the hearings of the Standing Senate Committee on Social Affairs, Science and Technology. While I am not a member of the committee, I made sure to attend the meetings. I want to extend my thanks to Senator Omidvar for the way she skilfully presided over the meetings and dealt with the bill. I appreciated her detailed account of the work of the committee in her remarks at the report stage last week. I also want to thank all the witnesses who appeared before the committee and whose testimony was very compelling and insightful. I think it’s fair to say that there is general support for this bill.

[Translation]

When I rose at second reading as a friendly critic of this bill, I expressed my long-standing commitment to the autism community in Montreal and elsewhere.

Senator Housakos and I worked on some community initiatives that would provide adequate, affordable and tailored programs and services to people with autism spectrum disorder, or ASD. One example is Giant Steps, a school in Montreal.

I don’t want to repeat everything that our colleagues have already said, so I simply want to say a few words about how urgently the autism community in Canada needs this bill to be passed. We must make it abundantly clear to this community that the Senate of Canada is an ally and wants to pass legislation that will compel the government to establish a national framework on autism.

Esteemed colleagues, this bill is relatively simple. It would enable the federal minister of health to establish a federal framework on autism spectrum disorder, in consultation and partnership with other ministers, with the provinces and with stakeholders.

[English]

It’s clear to me that the autistic community in all its diversity — patients, families, caregivers and supporters — is at the heart of this bill and the implementation of a national framework, and Senator Housakos made that clear to us both in this chamber and in committee.

To be certain, the Social Affairs Committee amended the bill to make sure — in case it wasn’t already — that the definition of “relevant stakeholders” in the section of the bill that deals with government consultation includes self-advocates, persons with lived experience, including caregivers and support persons, service providers, representatives from the medical and research communities and from organizations that focus on autism spectrum disorder in Indigenous communities.

I also welcomed the committee’s amendment to clause 2(2)(d), which shifts the focus from establishing a national public awareness campaign to national campaigns to enhance public knowledge, understanding and acceptance of autism spectrum disorder, while accounting for intersectionality in order to foster inclusivity. Witnesses called for this amendment. During committee hearings, Jonathan Lai, Executive Director of the Canadian Autism Spectrum Disorder Alliance was clear about it. He told the committee:

For instance, for one of the clauses, one of our suggested amendments would be to replace the word “awareness” with “acceptance” regarding a national public campaign. We’re not looking for awareness about a disorder but about acceptance for people, to have more a human-rights-based lens on that and to prioritize the social and economic inclusion of autistic Canadians and their families.

He continued:

We have to move away from that awareness culture around an impairment to an acceptance of people and to actions that would lead to a more inclusive society with the supports available so that everybody can participate more fully.

Senators will remember that the government has also been engaged in consultations on establishing a national autism strategy. There was some discussion on this matter in committee and whether Bill S-203 was duplicative. I don’t want to dwell on that matter, but allow me to quote the sponsor of the bill in committee who reminded us that an autism framework, which is what Bill S-203 seeks to implement:

. . . will serve as a fantastic springboard into that strategy because you will have a much broader range of discussion and consultation with stakeholders who will be around the table making their asks when you’re negotiating and building the framework.

This message was echoed by Dr. Jean-François Lemay from the Alberta Children’s Hospital who also believes that:

This bill will serve as a springboard to help create the space to codesign and develop new, innovative solutions leveraging Canadian and international knowledge.

Our esteemed colleague Senator Boehm, during his speech at second reading, also argued that:

. . . the appeal of the bill is that it is general, recognizing that there are jurisdictional issues and varying approaches in dealing with ASD across the country. Hence it is a framework within which a national autism strategy could be created.

In fact, Senator Boehm may recall that, just a few weeks ago, when the Public Health Agency of Canada appeared before our National Finance Committee, I asked officials from the agency to provide us with an update on the development of the strategy. In a written response received on May 4, the agency explained that it received $15.4 million over two years in Budget 2021 to support its work in the development of the strategy. The agency provided us with several key milestones that have been achieved in recent months.

We were told that there has been engagement with provinces and territories through a new federal-provincial-territorial working group on autism, along with Indigenous engagement. We were also reminded that the Canadian Academy of Health Sciences is consulting broadly and just released its comprehensive assessment report on autism two days ago. A national conference to build consensus on the priorities for action is scheduled to take place on November 15 and 16, 2022. Finally, the public release and implementation of a national autism strategy are scheduled for the spring or summer of 2023. This is encouraging news.

However, what differentiates the strategy from the framework being proposed in Bill S-203 is that this bill compels the government — by law — to develop a national framework. The national strategy is a policy decision, not a legislative requirement. If enacted, Bill S-203 would make sure we hold the government to account. It forces the minister to table a report in both houses of Parliament setting out the federal framework, and ensures a review and assessment of the framework within the first five years.

Honourable senators, this bill is a good one, and I thank Senator Housakos for bringing it forward. The committee did great work and made changes that strengthen the bill, and I think it’s time for the Senate to unanimously adopt this bill today.

Together, we could send a strong and united message to the autism community that we stand behind them as we put pressure on the government to develop and implement this national framework. This bill gives the government a pretty good road map to consult widely and address an array of issues without being too prescriptive.

Once implemented, I have no doubt this bill will find innovative solutions to unique problems and inadequacies in the ways we support — socially, financially, culturally and otherwise — individuals living with autism. It will also help reduce barriers and provide greater opportunities for autistic individuals to grow, prosper and contribute to our society and economy.

After all, let us not forget who this bill is for. It’s for all individuals who are on the autism spectrum disorder, their families, their caregivers, their advocates and all those who play a role, big or small, within the ASD community. Let’s pass this bill for them.

Thank you very much.