“As soon as I mentioned the ‘A’ word, I knew she would not be calling me back.”
This was what one of the parents I met at my preschool told me it was like trying to register her son with autism in a non-specialized local community program.
Once the registrar heard the word autism, they said that another child had taken the last spot available, despite actively recruiting for participants in the program.
Sadly, this experience is all too common.
Too many people assume that autism – a neuro-developmental disorder that covers a wide range of abilities and challenges – spells trouble. Doors close suddenly. That’s a shame because kids with autism are a delight and full of potential – potential that goes untapped when community programs don’t make room for them.
Community is supposed to include everyone. Parents of kids with autism soon find out this isn’t always the case.
When a parent first receives a diagnosis of autism spectrum disorder (ASD) for their child, life can immediately become overwhelming.
But you aren’t alone. The U.S. Centers for Disease Control and Prevention estimates that one in 59 children has ASD. The Public Health Agency of Canada estimates that one in 66 youth aged five to 17 is on the autism spectrum. That’s a lot of children and a lot of parents facing the same challenges.
I know first-hand because I’m an ‘autism mom,’ too. The moniker means that not only do I have a child with autism, but that I’ve had to fight for his rights – to an education, and to social and health supports – the whole way. I’m still fighting.
When my child was young, we had a series of appointments with specialists. The main recommendation, along with behavioural therapy, was to enrol him in community programs for improved socialization. But waiting lists for specialized programming for kids with autism were endless.
And we too got the cold shoulder when trying to enrol our son in mainstream programs. They didn’t want him, short and simple.
We know through research that with early intervention and the right supports, children with autism can learn and thrive. Being in an appropriate educational and social setting during the preschool years can result in significant improvements. That’s what I wanted for my son.
So it was out of the sheer frustration of being excluded and being advised that programs didn’t have enough staff to include my son that I decided to create a space especially for him and kids like him. I created the Little Red Playhouse, a non-profit preschool based in Montreal that has a ‘whole community’ approach; that integrates play and education for both neurotypical and special needs kids.
I came to realize I needed every skill I had learned in my previous profession in the corporate world to help my child. And if I was going to do it for him, then I should do it for others, too.
Over the next six months, I worked to create preschool programming that supports children with autism in an integrated setting. I had the idea that children with autism could benefit if they were taught by teachers specially trained to work with kids with autism.
The mix of behavioural therapy combined with the morning academic program really helps children with autism become school ready and learn basic skills alongside their neurotypical peers. The children can then transfer those skills into social situations and ultimately take all that hard work and move into the school system better prepared. The students are treated as children, not as clients or patients.
I’ve been doing it for 12 years now.
Throughout this journey, I met many other parents searching for answers and opportunities for their child; parents who are just learning to come to terms with the ‘A’ word and the doors that close as a result.
My best advice for dealing with unwelcoming community spaces is to trust your instincts, be kind to yourself and do your research. Remember, you know your child better than anyone.
You know when it’s time to fight and break down barriers in existing programs. Or when it’s time to go elsewhere, find a more welcoming and inclusive space for your child and your family. Or even, as I did, when it’s time to build something new, maybe with other autism parents, and create the spaces your children need to flourish.
Remember, ‘A’ doesn’t just stand for autism. It also stands for advocacy – advocacy for your child and for the warm and welcoming community your child deserves, like all children.
To do this, you need to become your child’s best advocate. This will require strength, conviction and determination.
But, as in all parenting challenges, it’s worth it.
Sharon McCarry is the mother of a 15-year-old son with autism, an autism advocate and the executive director of The Little Red Playhouse, a non-profit early education/intervention centre in Montreal.