Meet Maddy D.
Maddy D., 46
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.
My name is Maddy and I am autistic. I am non-binary and use they/them pronouns. I am a parent of five kids, four of whom are also autistic. I am diabetic. I am a wheelchair user due to a spinal cord injury. I am Canadian. All of these describe parts of my identity and make up who I am.
We live in a rural town slightly west of Ottawa, and we are a family at the intersection of many disabilities and diversities. We're a family that loves structure and loves randomness, we are also prone to breaking out into song and dance at any moment. Music is a passion and a thread that runs through all of us.
I’ve been advocating in the autism and education sphere since my oldest started pre-school. He’s 23 now. Having a family with so many different strengths and challenges has made the need for advocating with schools, the school board as well as provincial and federal politicians absolutely necessary.
My greatest passion is to see our world change and make the quality of life of autistics and other people with disabilities be the priority. I want a world where we can all not just survive, not just live, but thrive.
Learn more about Maddy through their words in this Q&A:
What 5 words best describe you?
Punny. Caring. Clever. Persistent. Funny.
Can you tell me 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.
How did receiving an autism diagnosis change your life for the better?
It 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. I've been more patient with myself. I am learning to really listen to my body when I start to feel overwhelmed with sounds, noise and smells. I know I need to think ahead of things that will help calm me down when I am getting upset. I am more confident in asking for accommodations where I need them.
The diagnosis also let me find community with the countless millions of us who are also autistic. Online and in person, I have been able to find people like me. The sense of community has been profound. Advocating for our rights and our needs to be heard has given me a real sense of connection. Seeing policies change, programs adapted and the voices of autistics heard gives me a great sense of both individual and family pride. We’ve come a long way, and we have a way to go. Disability Pride Month for me is that apex where we look both back and forward.
What do you appreciate the most about being neurodivergent?
I look at the world in a very different way. I see everything in puzzles, maps and music. I love tackling problems others have given up on. I like helping people who are arguing by rephrasing what they are each saying in a way that helps them see their common path. Until losing the use of most of my fingers and thumbs, I used to love unraveling yarn, threads, matching socks—anything that needed detailed attention to be undone.
I like feeling things intensely. I like having so much to think about, and never feeling bored. I love that my mind races and is always ready to both receive more input, but ready to act and share those thoughts.
I love both the harmony and the discord of the music in my mind and the world around us. The world we see and the lives we live are more than a simple melody. It’s many things all at the same time, or sometimes sequentially. Sometimes, we are off a beat from the world, but that’s ok. Sometimes, we are ahead and sometimes behind, but we still have our notes to play.
What do you wish more people knew about neurodiversity?
There is no “normal”. There is no “right” way or “wrong” way to think, act, communicate, play, “behave”. There are so many ways the brain is made and each neurotype is valid. We need to move beyond the language and attitudes of a very strict medical model when it comes to disabilities. We don’t need to be fixed, cured, changed. We need to be loved, accepted, accommodated. We all need our needs understood and then accommodated. If there is one thing that I say over and over, and that will probably be written on my tombstone, it's this: 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.
What advice would you give other people who recently got diagnosed with autism?
Welcome to the family!
Knowing more about how your body and your brain works can help you work through all of the internalized ableism and shame about how and why you do things. Understand trauma as a child. Understand why you may have struggled with relationships and communication. Why you feel everything so intensely, why you hear things others don't. Why you see patterns. Why emotions are so hard to put to words. All of these, and none of these, and so much more than these things really gets unlocked once you get a diagnosis. It’s not a bad thing. It’s putting words together that help you make sense of yourself. The same goes for parents who receive their child’s autism diagnosis.
The journey is challenging. But there is growth. The more your needs are identified and understood, and the more you are given accommodations to support those needs, the more you can accept yourself—and even more, have pride in you as you are!
Again, welcome to the family!