I’m an ‘Autism Mom.’ Here’s why Ontario is choosing the wrong path

Early intervention could make a difference. Here, protestors gather at Queen’s Park in Toronto on March 7, 2019 to protest changes to Ontario’s autism program. THE CANADIAN PRESS/Frank Gunn

I’m an ‘Autism Mom.’ Here’s why Ontario is choosing the wrong path

Autism families in Ontario are reeling in the wake of the Doug Ford government’s abrupt shift to fee-for-service, income-geared and limited funding for autism.

We are no doubt going to see new rounds of parental advocacy, political pressure and litigation.

As an associate professor, teacher and autism behaviour analyst, I can write about autism and talk about it until I turn blue in the face (and I do).

But as an “Autism Mom,” I know the details of autism from a close perspective.

From the crooked pathways to diagnosis, the blaming and shaming from schools, other parents and professionals to raising a child with autism into adulthood, each step can be unpredictable and disheartening. But it doesn’t have to be.

We can’t fix autism, and nor do we want to, because autism is part of our unique and cherished children. But we can make that journey an easier one, a supported one. It can be a journey with empathy, understanding and yes, even financial help — especially within those critical early years.

Yet right now Ontario is choosing a different, uglier path.

As a supposed consolation for autism funding changes, the Ontario Ministry of Education promises to boost school funding. This is as we hear class sizes will expand and teachers’ unions predict 18,000 positions could be eliminated over the next four years!

And did anyone notice none of the Ontario autism announcements include further training and funding for registered early childhood educators?

These are the professionals with expertise in early child development who form part of Ontario’s kindergarten educator team — the people who are potentially best-equipped and positioned to support our children during critical early years.

This is just one reason why Ontario’s plan is short-sighted, inadequate and wrong.

One problem with Ontario’s plan

With one in every 66 children and youth in Canada now diagnosed with autism, the health, educational and social dilemmas of how to respond to autism can seem overwhelming.

But in fact there is much we can do, especially for the 56 per cent of children diagnosed with autism by age six.

In a new research study I worked on that compared data about educational and developmental outcomes of children from Canada, the United States and the United Kingdom, we found that quality early childhood education pre-emptively lowers the need for later special education.

That means with quality early childhood education, some children who might have required special education won’t. For children with exceptionalities, such as autism, such quality early education can lower the intensity of supports later on.

For children with autism, evidence-based interventions are critical to success.

Our children with autism struggle with social communication. Yet, learning communication skills through a type of intensive applied behaviour analysis, often known as intensive behavioural intervention (IBI), is significant. So is the presence of peers.

Intensive applied behavioural intervention is significant, and so is the presence of peers. (Shutterstock)

Behavioural programs are often provided at home and in clinics; rarely are they hosted within day cares or kindergartens, where inclusive early childhood education programs could provide an essential forum for learning skills.

But in order for our children with autism to benefit from on-site pre-school and school therapies, a significant investment in adequate educator supports is required.

Fewer human resources in the early years is not the answer to reducing long-term financial and emotional costs for families whose best hope is early intervention.

Recently, I have been working with a team of my colleagues in inclusive education at Memorial University. We are part of the Canadian Research Centre on Inclusive Education.

All of us know that the earlier we can provide education and therapy in inclusive settings to our young children who are struggling or have disabilities like autism, the better.

Yet, right now, our educational systems don’t take the time to teach our early childhood educators much about autism.

Early childhood education and special education have developed as separate knowledge and specialty fields. While our society has moved towards inclusive classrooms, there is a lag in both educator training and funding.

Our children with autism are also excluded from child-care services: for example, 35 per cent of early childhood education programs in one Toronto study exclude children with disabilities.

In our recent study, we found that few national or international reports about quality early childhood education include information that is specific to autism spectrum diagnoses.

‘Early intervention’ - how?

Our school systems routinely exclude children with autism or make school attendance a challenge. Educators aren’t all taught to recognize the red flags of autism and all of our 13 Canadian jurisdictions support autism differently.

Parents are often told to wait and see when they have developmental or academic concerns.

If systems aren’t in place for early screening how do we get to early intervention?

While my own son’s diagnosis came far too late for early intervention, early intervention works. When our young children (and our adolescents and adults with autism) can’t get to a diagnosis, can’t get past wait lists, can’t afford intervention, are excluded from child care and can’t stay in school, this is more than a disability issue.

It’s a family issue, a gender issue and often a mental health issue. It is a human rights issue — just check Article 23 of the United Nations Conventions on the Rights of the Child.

Mothers of children with autism have a significant and ongoing impact on their opportunities to work. As a result, we now have families with the challenges of learning to raise children with autism along with lower income.

I used to be many things in many places from coast-to-coast across our country: a resource teacher, an autism consultant, a guidance counsellor.

But like all of our families raising and supporting children with autism, I will forever continue to be a parent of a child, adolescent and adult with autism.

Our family never accessed intensive behaviour therapy in a peer environment or early diagnosis. But I once fled back to Ontario to obtain mental health services for my child, and I feel nothing but gratitude for that moment in our family’s history.

I can’t help but remember all of those other young children that have never been offered either quality early or later interventions, and could benefit immensely.