Our Differences are Our Strengths
This Week’s Guest
This week I’m speaking with autistic self-advocate, Mickey Rowe, who has had a prolific and varied career as an actor, director, consultant, and public speaker. He is autistic and legally blind. He believes that our differences are our strengths and wrote about it in his book Fearlessly Different. Mickey was our keynote speaker at ICDL’s 27th NYC Conference last month and he blew me away with his nuggets of wisdom and inspiration. I’m thrilled for you to get to know him a bit on this podcast!
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Who is Mickey Rowe?
Mickey was the first autistic actor to play Christopher Boone, the lead autistic character in the play The Curious Incident of the Dog in the Nighttime. He says that he was always really drawn to theatre, playing characters, and putting on costumes growing up. He would frequently wear costumes every time he left the house. He does really well when he has really clear roles and guidelines telling him how to behave and what’s expected of him in any interactions, so doing a podcast or a keynote speaking is super easy for him since the rules are very clear, logical, and laid out versus if he ran into me on the street spontaneously.
Mickey says that when he got to dress up in a costume, it gave him a lens through which he could see his interactions.
The Curious Incident of the Dog in the Nighttime.
Chele and Khylil talked about The Curious Incident of the Dog in the Nighttime in our recent podcast.. It’s a fun fictional adventure story, Mickey says, but don’t take it as a story about autism because it’s written by someone who wasn’t autistic and said they did no research into autism. It’s about a 16-year-old boy who found his neighbour’s dog dead, having been killed with a pitchfork. Since he’s there petting it when the police arrive, and because he’s autistic and is acting in ways that are different, the police blame him. His special interest is Sherlock Holmes, so he decides he’ll become a detective and figure out who killed the dog. It becomes a huge adventure that takes him all over England on trains and on the tube in London and learning surprising discoveries about his family.
He became obsessed with stilt walking in elementary school and it lead him to theatre. Everyone knew that stilt walking was his thing, so he tried out for a stilt walking ostrich role for The Magic Flute at the Seattle Opera. He probably only weighed 50 pounds at the time, and he did not get it, but it was the start to his acting career. Mickey says his body needs lots of extra proprioceptive input, so he always sleeps with a weighted blanket, for instance, to help his body know where it is in space. Stilt walking did that for him because every single movement was such a big sensation.
His Love for Theatre
Mickey was in Special Education with speech therapy and occupational therapy. He had no friends. He spent all of his breaks pacing the hallways, not knowing how to approach people or how to start a conversation. He would throw away his packed lunch and pace until lunch break ended. I asked him if he was hungry. Mickey said he guesses he was, but he didn’t know what to do. He couldn’t figure out where to sit or who to sit with to eat his lunch and nobody ever invited him to sit with them. So he did that all through high school.
Mickey’s grandmother had a subscription to Seattle Children’s Theatre. He didn’t have many social interactions growing up and because people could tell he was autistic, they would raise their voice really high and talk to him like he was a young child. When he saw shows at the theatre, though, he got to witness all of these rich social interactions in a way that felt really safe for him. Nothing was being asked of him. He just had to sit and passively got to be a part of all of these rich, nuanced social interactions, he shares.
Also, Mickey adds, when the actors spoke to the audience, they spoke to him like they spoke to everyone else, so that made theatre feel like a safe, special, magical place for him. The social interactions in theatre made him feel like he was participating. The audience is welcomed into the social interactions, lives, and experiences. I commented that I should bring my son to some theatre and Mickey agreed!
The major thing he hears after speaking with parents at sensory-friendly theatre performances is how parents would have never brought their child if not for the ‘sensory-friendly’ performance because they would have been so scared. Mickey jokes that the sensory-friendly performances are really for the parents and other people attending than for the autistic folks who will stim and do what they’re going to do regardless of the type of performance.
Mickey says at one of the performances he was at, a non-speaking autistic audience member was so riveted by the performance, that he spoke more than anyone had ever heard before. Mickey believes it’s because of what he heard at our recent DIR conference: that the safe, structured environment could contain his heightened sensory experiences without him being overloaded or feeling threatened.
Mickey was non-speaking when he was younger. He lived with his grandparents for much of the time, and he loved interacting with all of the sea animals, including the river otters that lived under the porch. Rather than non-autistic people modifying their communication, Mickey finds that pressure is often put on the autistic person to communicate in a way that makes it convenient for the neurotypical person. He had pressure on him to communicate in this way and people around him felt they couldn’t connect with him if he didn’t communicate like that. But the river otters and other animals felt connected to him whether he spoke or not.
Mickey started speaking in elementary school in a way that only his grandparents could understand, so he started speech therapy at school and he hated it. It was really hard and challenging and not fun for him, but things started to click around fourth or fifth grade, he shares. He also had a lot of Occupational Therapy during middle school. But, his parents never told him he was autistic because they felt so much stigma around the label. He had an IEP with accommodations related to autism, but his parents told him that he just had his IEP only for his eyesight.
Mickey’s Autism Diagnosis
When Mickey was in college where he studied theatre, there were no more services. He had a therapist asking him if he was autistic. They referred him to the University of Washington Adult Autism Clinic where he received his diagnosis. Most places don’t have something like that, so he feels lucky that he was able to get that diagnosis. They also let him know that he likely wasn’t receiving speech and occupational therapy for his eyesight.
It felt really good to get his diagnosis, he says. It’s not like he didn’t know he was different, that he was in special education, and that others spoke differently to him than they did to others. He just thought it was him and that he was stupid or bad. The diagnosis validated who he was and it freed him up to start learning about himself more. It made him realize there are others in the world like him.
Talking to Your Child about their Autism
Parents often ask Mickey if or when they should tell their children that they are autistic. Every family is different, but Mickey suggests mentioning it in small nonchalant ways frequently so it never had to be this big conversation. An example Mickey gives is when his autistic child came inside and said that he really likes playing soccer with his brothers, but he really hates how much noise they make.
Mickey acknowledged that that makes so much sense because he is autistic and sometimes they experience sounds in a more extreme way than others do. Mickey asked, “You know those headphones you have upstairs because you’re autistic? Why don’t you go put those on and then you can go back out there and play soccer with them?” This makes it easier, Mickey explains, than sitting them down one time. You can also discuss what things will be challenging for them and talk about what they’re good at, Mickey says.
Our Differences are Our Strengths
When we don’t realize that our differences are our strengths, Mickey says, or when we forget that our differences are our strengths and that the things that make your neighbour so different from you are his strengths, and when we don’t celebrate that, the alternative is that we feel sometimes shame around the things that make us different, or we feel maybe like the things that make us different can be burdens, Mickey continues. He thinks this truly leads to so much genuine, real harm and danger.
The Danger in Shame
Growing up, Mickey’s mother and grandpa would always tell him he’d be really lucky if he found anyone who would want to marry him. When his mother would talk to friends on the phone she would say that the first pancake never turns out, about Mickey being the older child. When you hear this your whole life, Mickey says, you internalize these things. He believed that he’d be lucky if anyone wanted to marry him. So when he was 23 and someone did express interest in wanting to date and marry him, he thought this was the only time it would ever happen, so he said yes.
This lead Mickey into having an abusive relationship, and having to escape that abusive relationship in the middle of the night with his autistic kid in hand. When the abuse was just on him, he thought it was just something he had to accept and what marriage was for him, and that this is why you make commitments to people. You put up with things. But when the abuse turned to the younger child, that was when Mickey realized he had to get out. Mickey now has a very busy house with his new wife with two children each in their blended family and is very happy.
It’s just so important to remember that kids are always listening to the things we say, and that there’s truly so much real danger and real harm in ever making people feel shame around their differences or making people feel like they are burdens because of their differences, and there’s so much to be gained by celebrating our differences and by celebrating all of the things that make us different from each other.
Problem-Solving and Executive Function
I asked Mickey about helping our kids learn how to problem solve. He mentioned throwing out his lunch in high school everyday and just pacing the hallways because he didn’t know where to sit to eat his lunch or how to ask anyone to sit with them. In DIR/Floortime, the early intervention is really about getting that engagement and circles of communication in a way that suits the child, and we’re always following the child’s lead on that, but really, the heart of Floortime is pushing past that and getting into the higher capacities of thinking and problem-solving. I asked Mickey when his self-awareness kicked in and when he understood that he could figure something out.
It depends on the day and the situation, Mickey says. When he was performing with The Curious Incident of the Dog in the Nighttime, he lived in a hotel with the rest of the cast and they had a company car or two for the cast, but he didn’t have a driver’s license. He was in his late 20s. He was working six days per week and Mondays were the day off, he explains. He would go with the cast to the grocery store and he would tell himself to get one week’s worth of food and leave with a box of Oreos, two apples and a box of granola bars, then realize that was not a whole week’s worth of food. The same thing happened each week. He’d get one Trader Joe’s frozen dinner, a box of Oreos, and something else.
Knowledge about yourself is power, and there is a place for everyone in this world.
Executive function is one of the biggest challenges in Mickey’s life right now, he says. He hires cleaners to come to the house to accommodate him and his family to function at their best. When he was acting in The Curious Incident of the Dog in the Nighttime, he realized that he functioned best by buying a $5 sandwich for breakfast and lunch at Starbucks every day. It relieved so much stress and pressure for him trying to worry about that executive function to then be free to do other things. Something that has helped him immensely as an adult, he continues, is to say that if he’s still struggling with these things now, it’s alright to find other workarounds instead of trying to force his brain to do something it’s not good at, even if it costs more money.
It’s expensive being disabled, Mickey shares. The unemployment rate for disabled people is about 85 percent and even if you can get employment, there is no federal minimum wage for a disabled person. You can legally be paid as little as a few pennies per hour in many states if you have a developmental disability like autism. Hundreds of thousands of disabled people in the United States are paid sub-minimum wage and the average is about a dollar an hour. So they’re less employed, paid less, and it’s more expensive being disabled, Mickey laments.
Advocating for what we need
This reminded me of another quote from from Mickey’s ICDL’s Conference presentation: “Always feel confident in asking for what you need. When we advocate for ourselves, we are actually helping everyone.” Mickey says that when we advocate for ourselves or our kids, it can feel like we’re being burdens or being selfish. We are not being a burden or being selfish when we advocate for ourselves or for our kids, Mickey assures. The deaf and hard of hearing community had to advocate so hard for captions to be put on YouTube videos. It makes it easier for everyone, Mickey continues, because we can all now watch a video without headphones and know what’s happening.
It makes everyone’s lives easier. Curb cuts in the sidewalks for those with mobility disabilities make our lives easier if we are pushing a child in a stroller, for instance. Neurodiversity is the same way. If we can make spaces feel safe and accessible for autistic people, it will only help everyone. Things that help autistic people make things easier for everyone. We feel so much discomfort around disability, he says. There’s nothing bad about the things that make us different. We can collaborate better with those who are different who will think about things from different angles and think about how to approach a problem differently.
There is so much danger in feeling that your differences are wrong.
Feeling Valued Every Day
Mickey asked at ICDL’s Conference, “How can we make sure that our students feel valued every day?” He worked for four years in college to get rid of the tension and movement in his hands otherwise he was told he’d never get hired. After four years he got pretty good at it, but when he got the role in The Curious Incident of the Dog in the Nighttime, he got to be himself and could let that tension back in and he was being valued for being him.
Listening to Self-Advocates
I asked Mickey about his opinion on self advocates speaking for autistics who can’t speak for themselves, which some people refer to as ‘low functioning‘. Parents sometimes say that they don’t speak for their children. Mickey would encourage those parents to take to TikTok and Instagram because there is such a large community of self-advocates who wouldn’t have had platforms before. Follow a bunch of non speaking autistic self-advocates, he suggests. They are doing awesome work.
The autistic community tends to say the same things and agree on most things, Mickey states, but it’s good for parents to hear things from someone who more resembles their child. We’re all on the same team, trying to accomplish the same goals, he asserts. Also, he warns, be careful about comparing your seven- or eight-year-old to what a thirty-year-old self-advocate is doing. If people were not autistic, Mickey would not go up to a forty-year-old and say that you are nothing like my five-year-old. Know that every autistic child is going to grow up to become an autistic adult, Mickey says.
When your child is an autistic adult, Mickey continues, I think you would really want your child’s voice to be heard when they speak about their lived experience and have people value what they’re saying. When we listen to autistic adults we show them that their voices are valuable and valued so when your child is an adult, they will realize their voice can be listened to as well, Mickey says. It’s so powerful for autistic young people to see their parents listening to autistic adult voices, whether they’re speaking or non speaking adults, Mickey assures.
When Mickey was non speaking, people assumed he couldn’t understand so said things about him that weren’t flattering in front of him. Always assume competency, Mickey says. Today, those using AAC all say the same thing: that they could understand everything people said around them. Value your child and set that expectation of value for them so that when they’re an adult they won’t let others speak for them, Mickey advises. To be a parent of an autistic child, it is a valid identity, Mickey says, but it is not the same lived experience or identity as your child. They’re two different hats, Mickey says.
It’s not devaluing how valuable your role is as a parent of an autistic child that you know your child more than anyone else, Mickey states. But being autistic is another identity. For parents of non speaking children who are young, Mickey says to assume they understand, encourage them to find alternate communication, and validate that communication to be as valuable as spoken English! Find them AAC and help them learn it to communicate. It’s just as valid as spoken communication, Mickey asserts.
Mickey has heard from parents how scared they are when their non speaking children start to use keyboards to speak. When you don’t assume competency then see the child speaking, it can be terrifying, Mickey says. It was more hurtful for the parent to realize how intelligent the child is and that they missed it, he believes. Language is so important for all kids to be able to communicate their thoughts, so start with AAC or a keyboard or something, he says, whether it’s sign language or pointing at things.
Mickey says to find a way you can communicate with your child and value it–not as a temporary thing until they speak verbally. That is, don’t treat the AAC as a lesser than/secondary stop on the way to the end goal. Treat it as equally valuable.
Do You See the Potential in Your Child?
This brought me to the last point I wanted to make that I brought up in my presentation with Emily Gouws–who didn’t speak until he was 15–and ICDL’s CEO, Jeff Guenzel at the recent ICDL Conference. I asked is we, as parents, see the potential in our own kids. Do we? We’ve heard so much about their deficits, sometimes we can internalize that. Mickey also mentioned how much he liked the points brought up at the conference around moving towards the social model of disability. He says that we just need society to be more accessible and supportive rather than thinking autistics need to be ‘fixed’.
This week’s PRACTICE TIP:
This week let’s realize that our children are listening to everything we say and intentionally make an effort to be cognizant of what we say in front of them or about them.
For example: When speaking about your child in their presence to others–whether it be therapists, teachers, friends, or family, think about how we are making our child feel. Speak about their strengths, acknowledge the supports they require versus talking about things they cannot do or face challenges doing. Be the enthusiastic cheer leader that your child needs to realize they are valued by you for who they are.
A big thank you to Mickey Rowe for speaking with me to share his life experiences and nuggets of wisdom with us, including his advice to parents. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!