Heads Up: April is Autism Acceptance Month

Autism Acceptance Month has been observed since 2011, when the Autistic Self-Advocacy Network (ASAN) set out "to change the conversation around autism, shifting it away from stigmatizing 'autism awareness' language that presents autism as a threat to be countered with vigilance." Fourteen years later, the campaign has been picked up by advocacy organizations around the world, all sharing that common goal.

In honour of Autism Acceptance Month (not to be confused with Autism Awareness Month, which falls in October in Canada) this year, we chatted with Niko Pupella, a Canadian autism advocate and community support worker who has sage advice for caregivers of autistic children and other developmental disabilities.

Q: Niko, tell me about yourself growing up. A: I had a tough upbringing. I was born with cerebral palsy and didn’t talk until I was four or five years old. I started wearing glasses at seven. I was also diagnosed with ADHD and learning disabilities. I was bullied a lot in grade school and called “hunchback”. It was really tough.

In high school, I started to get extra academic support. My Mom is a bookkeeper and she taught me accounting when I was seven. I started helping her as a child, but when I tried to enroll in a business class in high school, the special education department didn’t understand my capabilities and yanked me from the class. They didn’t think I would understand the material. They also wouldn’t let me take a few other classes I wanted to.

When I was 17, I was also diagnosed with autism. I had been having difficulty with social interactions and understanding social cues from others. I was very cautious, shy and didn’t talk a lot. Now I’m a Chatty Cathy, and you can’t shut me up!

After [high] I started studying to become a systems technician in college, but the material was very difficult and I struggled, even with extra support. I left after three and a half years, but even though I didn’t graduate, I learned a lot and started helping others with tech support. I also started a web design company.

Q: Tell me about your life today. A: Today, I work at Tribute Community Centre in Oshawa, Ontario, which is a hockey arena where I [work] the concession stand. I have also just been re-certified in Smart Serve, a training program for responsible alcohol sales, service and delivery. In addition, I work for the Township of Uxbridge as a spare crossing guard, and I am cooking and doing customer service for Gangster Cheese, a local food truck and restaurant company. I’m learning to make their sandwiches. And I still have my web design company on the side.

I’ve lived on my own for the past nine or ten years, and I do all my own cooking, cleaning and budgeting. I love horses and find riding really therapeutic. It relaxes and distracts me. I also do role-play gaming as a distraction.

Q: Tell me about your advocacy activities. A: I am very involved with Community Living Ontario. I am vice president of their self-advocate council. When I joined, we were more of a discussion group. Today we do a lot more. We advocate and do presentations and webinars. We focus on important issues like poverty, affordable housing, human rights, fair wages and barriers to health care. I am also a member of Community Living Ontario’s Rights Review Board Committee and the Board Development Committee. In addition, I am president of our local self-advocate group, the A-team, which is part of Community Living Durham North. I am very active in my local community.

For Kerry’s Place Autism Services, which is Canada’s largest autism services provider, I am a leader on the Durham Autism Advocacy Committee. I was initially referred to them after my autism diagnosis to get more information, and I later received some services there. Our committee focuses on educating people and building respect and awareness about autism to break down barriers and stigma. We also share the strategies that help each of us.

Q: What do you want people to know about autism? A: Don’t look at autism as a disease. Every autistic person is different and unique, with their own gifts and talents. No two autistic people are the same, [but] function just like you and me. We may have differences, but that’s OK. I have a friend who can only partially speak, but he is very smart and understands everything that people say around him.

Q: What is your top advice to people with autism? A: You are not alone. There are lots of us like-minded people around, and we understand each other really well.

Q: And your advice to parents and caregivers of autistic individuals? A: Be patient. Be kind. Ask questions. Don’t make assumptions and be open-minded. Reach out for added support. You may get different opinions but one of them may be right for your child. Patience is key. My Dad learned that with me—it can take me a long time to explain things. He is now more understanding.

Q: What are your hopes and dreams for the autism community? A: I hope that people will be more aware, that they will be non-judgmental. I hope our society will become more inclusive so that people don’t judge us [for] what we do and how we act. Please work with us, not against us. And remember that autism is lifelong and cannot be cured.

Q: And finally, Niko, what are your hopes and dreams for your future? A’. I’m getting married on June 28! In five to ten years, I hope to have a bigger apartment and hopefully a child of my own.

Learn about opportunities to support the Canadian autism community at autismcanada.ca.