Maddy (they/them) is a non-binary Autistic adult and parent of five children with four who are also Autistic living in rural Eastern Ontario. Maddy advocates proudly for inclusion and acceptance of Autistic individuals. They have been an advocate for change in education, affordable and accessible housing, as well as moving disability supports rates out of poverty levels. Maddy is a former member of the Ontario Autism Program Advisory Panel, and the Ontario Autism Program Implementation Working Group.
Maddy is President of Autistic Bridge, an Autistic-led organization fostering connections between Autistics, their families and those who support them, and a leader in the National Disability Strategy movement to build a nation-wide coalition of disability organizations to advocate for meeting all needs of all disabilities at all ages. They are the Vice Co-Chair of the Autism Alliance of Canada (formerly known as Canadian Autism Spectrum Disorder Alliance -CASDA), where they are helping to develop a National Autism Strategy. They have spoken at the annual CASDA Summit in 2020 and were both moderator and panel members at the CASDA Summit 2021 and 2022. In 2021, they spoke twice to the UN Human Rights Committee regarding the Convention on the Rights of Persons with Disabilities.
Can you tell us a bit about your autism journey?
The day that my son was diagnosed 20 years ago at age 3 was the best day of my life because I finally had a name and a label to describe him and I knew that would help me better understand and support him. I learned through my son how to watch him, follow his interests and take his lead to interact with him. I learned to jump into his world.
Being diagnosed in my 30s was a real pivotal point into understanding myself and understanding my kids. My two younger girls were diagnosed later at age 5 and 6, and my 22-year-old just discovered that she was autistic two years ago and I’ve been helping her alongside that journey.
Receiving an autism diagnosis made it so much easier to understand myself and the significant struggles I had as a child, teen and young adult. Understanding allowed me to accept myself, and I have found that especially in the last six years, I can lean more into my “autistic-ness” and find better supports in domains where I am challenged.
Please tell us about yourself.
My name is Maddy Dever. I’m an Autistic adult and parent of five kids, of which four are also Autistic. I live in rural Eastern Ontario in a small town called Carleton Place. I am a wheelchair user from a spinal cord injury. I’m an advocate for Autistics as well as disability rights. The legacy that I’d love to leave is for everyone to be at the table and that decisions made for and about people with disabilities are made along with people with disabilities.
What is the importance of language when talking about autism?
Language is so important when talking about Autism and disabilities. We need to move away from language that is deficit-based, and move towards language that is strength-based. In doing so we are changing our perceptions about Autism and disabilities.
I talk about Autism positively and it has helped the people that work with my kids and the people that work with me. A simple thing for me, I say I am Autistic. I don’t say I am a person with Autism and that’s a choice that everybody with the diagnosis gets to make. There’s nothing wrong with being Autistic, there’s nothing bad or evil. There are challenges that come with being Autistic. The more conditions that are coexisting, (not comorbid but coexisting), the more intensely we can be challenged.
Support the needs, not the labels. If we can build a culture of accommodation, we will build a world that truly is inclusive of everyone.
Can you tell us about the neurodiversity movement and share some tips for neurotypical people to keep in mind and be respectful of the neurodiverse community?
Everybody, every single person has a neurotype. We call the vast majority of people whose brain works very similarly, neurotypical. When you’re talking about Autism, ADHD, and other neurological conditions, they are neurotypes that function differently than the vast majority of people and we call them neurodivergent.
We tend to put people into boxes with labels and that can be helpful if it actually gets you help. But if labels get in the way of giving you support, then we need to stop looking at labels and look at the everybody’s needs. Everybody has challenges and when we accommodate, we move everybody forward. If we had a culture of accommodation then it really doesn’t matter whether you’re neurodivergent or neurotypical. Your needs are the things that we’re trying to address.
What are some of your recommendations to avoid or overcome ableism?
Ableism exists because the world has been designed for people with typical abilities. Ableism creates many barriers all around us, preventing those with disabilities from fully participating in their communities. There are systemic barriers that exist for those with invisible disabilities, such as Autism. Autistic people have sensory challenges significantly more than neurotypical people. The barriers and ableism we face can be in sounds, lighting, number of people. Sometimes, Autistics just need some quiet places to be able to get away.
I think Universal Design is a great move forward. When you’re imagining a space, you try to make sure that everyone will be able to use it. We need to put the focus on needs and accommodation, and if we do that, we’ve made the world a better place for everyone. Because everybody has needs. Everybody has challenges, and they may not be visible. The more you accommodate to make it work for some, the more everyone succeeds, and everyone gains.
There is an unfortunate history between Autism Speaks and a group of autistics, what motivated you to partner with Autism Speaks Canada on Life on the Spectrum project?
The reason I decided to work with Autism Speaks Canada on this project is that Autistics have been asking organizations and governments to listen to us for years. Autism Speaks Canada is bringing us to the table, to do things with us and not just for us.
For me personally, when I hear an organization wants to reach out to Autistics, to hear us, I will be a part of that. For the last two and a half years I’ve been on the board of directors of the Canadian Autism Spectrum Disorder Alliance, which is now called Autism Alliance of Canada and on the board with me has been Jill Farber, who’s the Executive Director of Autism Speaks Canada. I’ve had a chance to get to know her and she’s had a chance to listen to me and to get to know me and understand the message that I talk about bringing Autistics to the table, changing the language views, and she invited me to speak to the Autism Speaks Canada board and staff. It was an opportunity for me to influence the organization that so many Autistics have had such a hard time with.
What advice do you have for other self-advocates?
My advice for other Autistic advocates is to keep talking and keep sharing your stories and experiences. It can be challenging, working with organizations. If any organization is saying, hey we want to speak to Autistics, really think about giving them the chance. Consider taking the risk because everyone is rewarded when everyone listens to us.
What advice do you have for 2SLGBTQ+ self-advocates?
My advice to 2SLGBTQ+ advocates is to be yourself. It is hard being Autistic. It is hard being queer. But the more you free yourself to be you and express yourself the way you want, the easier it is on you. We live in a time where the opportunities for us to be ourselves are increasing. I think that we Autistics don’t necessarily see things in the same boxes that neurotypical people do. We don’t understand the invisible rules about gender, the invisible rules about sexuality. As they don’t make sense to us, it’s understandable that we explore gender and sexuality in a different way. Once we accept that we can be free about it; it just gets easier to accept ourselves. When you’re accepting yourself, your path becomes easier.
What can Canadians do to promote acceptance and inclusion for autistic people?
In order for Canadians to be truly accepting and inclusive, we must start focussing on people’s needs. We should look past people’s labels by focusing on their strengths and challenges and build a path that’s for them.
The language we use is the biggest change we can make when we talk about Autism. We must move away from the deficit model where we look at disability in the negative – disorders, broken, needing to be fixed. We should move towards the social model of disability which says we are disabled because of the barriers around you. We need our allies to remove the barriers around us so we can thrive.
We’re valued because we are. We really need other people, our allies, to see our inherent value and not just think about us when you see the stories that talk about how we surmount some obstacles even though the day-to-day lives of Autistics can be challenging. We have value because we exist!