Autism Acceptance Month: Shining a Light on the True Cost of Neglect

April is Autism Awareness Acceptance Month. It’s a month where organizations and individuals try to raise the profile of autism, highlighting the successes of many incredible people. With 1 in 29 children in British Columbia having been formally diagnosed with autism, chances are you know an autistic individual.

While there’s lots of talk about autism acceptance, sadly governments and employers have taken little action to truly support these individuals so they can lead their best lives.  

As a sister of an autistic man, and mother of an autistic child, I’ve been part of the autistic world my entire life. Yes, some positive changes have been made, but overall progress is slow and the actual benefits to individuals have been  minimal.  

In a recent article by Autism BC on Why autistic adults are living in poverty and why it matters, they quoted StatsCan data from 2017 that found autistic adults have the lowest rates of employment across all populations with disabilities in Canada.

So, despite all the positive stories during Autism Acceptance Month, these individuals are still struggling at an alarming rate.

Why is this?

Marginalized kids

As a mom, I will say it starts with supporting autistic individuals as children. I mean truly supporting them. Ask any parent or caregiver of an autistic child, and they’ll share the struggles of getting support in school, accessing therapy, stretching their autism funding to meet their child’s needs, delayed assessment, ableism and more.

I know many families that have spent thousands for autism and pysch ed assessments in hopes of getting their child support in school, only to get zero help. Despite school districts receiving an additional $24,000 in funding for students with autism (in BC), this does not mean the child with the diagnosis will actually receive support.

Rather, the funding goes into the school district’s general operating funds. Many, many students with autism receive no additional support, despite well documented needs.

For this reason, lots of parents are pulling their kids from public schools. Students with disabilities are disproportionately represented in the increase of students to online, independent and home schooling.

Little transition support

Another challenge is the lack of transition support for autistic individuals as they enter adulthood. Service providers call it the great drop off. Families go from having funding (albeit limited) and therapists as kids to very little support when they turn 18.

Adding to the challenge, the support that is available is only for autistic individuals with intellectual disabilities. Once again, there’s a lack of recognition of the complex needs of autistic individuals – including executive functioning, sensory processing, anxiety and more.

I’ve spoken to numerous parents and caregivers who are shocked at how quickly supports dry up. The result – high underemployment rates, adults living at home or in poverty.

True acceptance

To move from autism awareness to autism acceptance, we need to invest in people. Provide the support children need in school so they can go from surviving to thriving. Recognize the executive functioning, anxiety, sensory processing and other challenges that can be barriers to children learning without adequate support.

This means earmarking funding for the child, instead of it being absorbed into a large operational budget. Increases support resources in schools – such as therapists, educational assistants, counsellors, resources teachers and more.

It also means re-evaluating how we support the transition from childhood to adulthood so we don’t have the great drop off.

As for employers, it’s taking a fresh perspective at hiring practices as the traditional job application and interview process puts autistic individuals at a disadvantage. Once hired, recognize the one-size-fits-all approach does not work. Modifications to hours, work environment, and other accommodations are needed to help the individual succeed.

While I recognize change takes time, the rate of change for supporting autistic individuals to live their best lives has been progressing in slow motion. The modifications and changes that are needed are well documented – from the education system, workplace, adult transition, disability funding and more.

Personal commitment

This Autism Acceptance Month, I encourage you to think of one way you can make a difference. Truly move the needle. Is it looking at your organization’s hiring practices? Educating yourself on how to create an inclusive workplace? Or writing to your elected official about much needed funding increases to education?

As a mom, I will continue to fight the fight, as will thousands of other parents. But we could use your support to make the change our kids deserve.