“If not ABA, Then What?”

Over the past month, we’ve been asked by parents, policymakers and concerned Ontarians: What are the alternatives to ABA? Are there other alternatives?

Before we answer (below), we’d like to reframe the question and ask: why would anyone think that ABA is the only way…or that there is only one way to provide supports and services to autistic people? We know that for almost any challenge there are multiple solutions, and that creativity and imagination drive the best approaches. Why would it be different for raising autistic children?

There are many places where ABA is not used and yet children learn life skills and benefit from inclusion. We know that inclusion is associated with positive life outcomes and that by contrast ABA fosters segregation, from the moment a child enters the closed setting of the intensive early intervention centre. Ontario’s former autism policy was an ABA-based plan. We don’t see evidence that this was an informed decision. It appears to have been an appeasement decision–one that promoted segregation and diverted funds for much-needed services. Moving forward from the mistakes of the past, our new government can make change by:

• Assessing data on community needs;
• Reviewing independent research on autism services;
• Analyzing best practices for school inclusion from other jurisdictions;
• Continuing to consult with autistic Ontarians;
• Using the above information to inform policy.

Making good autism policy in Ontario is not a matter of #pausingtheplan and then going back to the same old thing. We’ve needed a change in our province and it’s finally happening. This article is a start of a broader conversation on how to change autism services and unroll inclusion in Ontario in the best way possible.

What Do Other Places Do?
A good question to ask when making public policy decisions is: what are other places doing, that works better?

We will give two brief examples for now: Scotland and England. Neither the UK’s National Institute for Health and Care Excellence (NICE) nor the Scottish Intercollegiate Guidelines Network (SIGN) endorse or recommend ABA. The NHS of both countries do not recognize ABA as a science. ABA is used in a handful of specialized centres in England, having served around 2,000 students and is viewed as a “last resort”. Local health authorities in England and Scotland also do not fund ABA.

What this means is that the vast majority of autistic children in these countries do not have ABA, yet they are still able to learn life skills, be included in society and have positive outcomes.

Mainstream offerings for autism in these countries are determined by local authorities, but generally include funding and support for speech language pathology (SLP) and occupational therapy (OT). Increasingly, these services are not about taking the child away for 1:1 sessions, but to educate those around the child in terms of their interactions to foster communication and support self-care skills, together.

Augmentative and alternative communication (AAC) for non-verbal or partially verbal students is a part of SLP there. Whereas it would be standard for a Canadian ABA-trained SLP to wait 6-12 months before introducing AAC, a non-ABA SLP will likely include AAC from the start as needed, not wanting to sacrifice a child’s need to communicate in the quest for immediate speech.

Newer types of programs, such as SCERTS, are being rolled out in Scotland and the UK (as in the US and other countries). Governments there are investing in piloting models such as SCERTS, which focuses on: Social Communication, Emotional Regulation and Transactional Support, emphasizing the role of the family and community as partners in communication and implementing accessible design and supports.

Programs such as these proactively prioritize inclusion, a crucial part of autism services that was not a part of the former autism plan in Ontario. Inclusion may be more intrinsic to programs in Scotland and the UK because the culture takes a less segregationist approach to autism than Canada has (to date). For example, the concept of “early intervention” (autistic toddlers getting 25-40 hours per week of therapy away from family/peers) does not reflect the fabric of social life there. Instead, autistic children are included in community life from the start.

The idea that children would be removed from the community and sent to “early intervention centres” isn’t the normative response to a diagnosis there, nor is it in New Zealand or a range of other countries, which instead use non-intensive, family-centred therapies. The Maori term for autistic is takiwatanga, meaning “his or her own time and space,” signifying a respect for the timing, spacing, pacing and life-rhythm of autistic Maori. The term has taken on a broader meaning throughout Australian culture as they work for inclusion, fairness and autistic acceptance.

By contrast, as we noted in our Human Rights Report to the United Nations, Ontario’s approach to autistic children has typically reflected the older, residential-institution approach to autism. Removing children from their peers at an early age sets the stage for a lifetime of segregation. Some argue that this segregation is “the only way autistic children can learn life skills,” but that argument doesn’t hold up when we compare with places such as Scotland and the UK, where children learn life skills without being segregated.

We can then see that segregating autistic children doesn’t represent a therapeutic need at all: it just represents tradition—a tradition we need to end.

The  government of Scotland recently committed to meaningfully involving autistic people in all decision making about autism policy. In this commitment, it will be heading off many of the problems that exist when institutions try inclusion but lack direction. Their proactive, positive approach is summarized in this statement:

 “Autistic people contribute much to Scottish society and with the right support many could contribute much more.”

All countries and regions seeking to make change need to be communicating with each other and consulting with students and self-advocates. There is room for improvement in all inclusion-based programs. Our governments can learn from other jurisdictions what has worked and what hasn’t, and let that inform its policy decisions.

What about Ontario?
Autism policy in Ontario is heading away from older segregation models and towards an inclusion model:

• Under the new autism plan, OT, SLP, and AAC supports are funded;
• School districts in Ontario are learning newer models such as SCERTS (for example, its founder will be presenting to the Halton Region School District this month);
• We have a government commitment to move towards more inclusive schooling;
• Autistic people are being consulted in policymaking, for the first time in our province’s history.

Segregation has historically defined the experience of many autistic students in Ontario. From the moment of diagnosis, autistic children are tracked into intensive therapy centres, while their peers are getting to know each other in their neighbourhood preschool and Early Years Centres. When autistic children leave the ABA centre to enter primary school, they often have no friends because they were removed from their community at diagnosis; likewise, their peers don’t have experience with autistic children.

Although many teachers have good ideas and intentions for inclusion, their efforts to connect can often fall flat because our education system is still entrenched in the notion of  2-tier education. With no umbrella of accessible design in our school districts, autistic students are often re-routed into our troubled special education system–despite advocacy by their parents–or are even excluded in part or wholly from the education system.

Some may push back that “ABA promotes inclusion,” but there’s no evidence to support that claim. While accessible design as well as inclusion programs like SCERTS involve all children and adults in making spaces welcoming, the ABA model focuses only on the individual “pathology” of the child, targeting behaviours (such as special interests or flapping) and trying to eliminate them. That focus is incompatible with our society’s values about diversity and the collective role we play in accessibility, making ABA an unsustainable approach to disability.

It is a significant step forward that our government is funding OT, SLP and AAC and consulting on comparative approaches to autism policy. With the right tools and a spirit of bipartisanship, our province can become a leader in Canada on inclusion.

This is an important moment in Ontario. What happens here reflects a national policy conversation as well. It is following in the direction of the broader society: the understanding that neurodiversity is part of diversity. Reforming the autism services paradigm opens up broader inclusion throughout society. With this shift, we hope that there will soon come a day when people will no longer ask, “what will we do without ABA?” but instead ask, “why on earth were we doing ABA for so long?”