Daniel Maskit is a creative technologist, runner, writer, and public speaker based in the U.K. He holds a Ph.D. in computer science from Caltech, and has held research appointments at MIT, Stanford, and the MIT Media Lab. His twenty year career in visual effects for feature films saw him work on projects such as I, Robot, The Lord of The Rings, and Harry Potter. He is a member of the British Academy of Film and Television Arts (BAFTA). He loves bears and blogs at Zen Master Bear Speaks on a variety of different topics, including autism, disability, and running. This week he discussed workplace accommodations and the importance of engaging with the Autistic community.
You were diagnosed with autism at 54. What made you eventually decide to pursue a diagnosis?
It was a long process which was significantly slowed down by how poor my own understanding of autism was. The more I learned about autism, the more I suspected I was autistic. I was having a hard time discussing my desire to get assessed with my wife because she had her own misconceptions around autism and didn’t seem open to the idea that I might be autistic. Finally, on Christmas Eve, 2018, we were having what was meant to be a lovely dinner with good friends at a beach bar in the British Virgin Islands, when I got pushed into sensory overload by distortion in the sound system. I literally walked out on everyone and wandered up the beach until I was far enough away that I wasn’t feeling assaulted any more. After she came and found me on the beach, my wife and I finally had the conversation we needed to have, and she told me that she loved me no matter what labels I had. As soon as we got home, I started the process of finding someone to assess me.
In what ways have you connected with the Autistic community (either before or after your diagnosis)? Has this been helpful to you?
I knew about the Autistic community, but felt that as an outsider I didn’t have anything to contribute. Having spent pretty much my whole life feeling like an outsider, joining a group to be an outsider really didn’t appeal to me. Now that I know that I am a member of the community, I have been connecting with a few groups. It means a lot to be able to connect with people who aren’t judgmental of my differences, and who relate to my experiences in a way most people never would. I’ve recently connected with the NeuroClastic community, and they have been so welcoming and supportive. A lot of times the rest of the world can cause autistic people to second-guess their own experiences; it’s really great to connect with people who will support you and affirm your reality.
In your TED Talk, you tell neurotypicals, “The question isn’t how should we change our behavior to better fit in, but how must you change your thinking to get the full advantage of our abilities.” You cited your visual pattern recognition abilities and how sometimes coworkers didn’t listen to your ideas because you couldn’t present them in the “right” way (that they understood and weren’t offended by). Given these obstacles, how did you gain valuable work experience to help you obtain successful employment that you enjoyed?
I got lucky in a few ways. I am quite gifted at observation and performance, so I was able to mask fairly effectively. Never well enough to fit in, but well enough to scrape by. Of course those decades of trying so hard to ‘pass’ as neurotypical makes it hard for me to figure out how much of who I am today is really me, and how much is performance. I was interested in computers and writing software when very few people were, and that rarity helped me land my first job. From there I went on to grad school at Caltech, where I am sure I was far from the only undiagnosed autistic. I then moved into the visual effects world which at the time was largely populated by a neurodiverse workforce. It’s also a world where delivering quality solutions was valued much more highly than being a team player or getting along with others. For a number of years, the film world really was a place where building systems that worked, and which artists liked to use, was enough to keep me employed and happy.
Your TED Talk also mentions that being upfront and honest about your needs with an employer and coworkers is a good litmus test to determine who your allies and who your obstacles might be at a specific job. In general, have you found more allies this way, or has this disclosure led to unfair stereotyping, or both?
It’s been a real mix. I’ve been really lucky to always find some people who can see past my idiosyncrasies and value my clarity of vision and outside-the-box thinking. I’ve also run into a lot of people who are so hung up on their vision of what work, and collaboration, and professionalism look like, that they seem to be incapable of understanding the value of neurodiversity. I don’t think I have ever worked anywhere where the people in charge of defining what it takes to get ahead have done a good job of valuing someone like me.
Do you use an “interpreter” at work to translate your ideas to NTs, as you discussed in your TED Talk? If so, what does this look like?
It definitely is something that I try to do. I had some really good experiences with this in my last job where the woman I reported to really got me, and understood what I was trying to do. She was fantastic at calmly communicating my ideas to people who really didn’t want to hear them. She also gave me a lot of coaching in diplomacy, but from a place of offering a gift rather than correcting a wrong. I’ve tried to replicate this, but it has proved challenging to find someone who understands me well enough to effectively translate. I really do believe that it is a useful model, and I think it is important to break down the idea that “well spoken” has any necessary correlation with “worth listening to.”
Your recent article on the COVID-19 crisis discussed how Autistic people could be better cared for during the pandemic. How are you and your family doing right now? What are you struggling with, and what, if any, positives have come out of this situation for you?
I think the hardest thing for me has been the disruption to my routines. I spent the first couple of weeks sick, just a bad cold or mild flu, but that completely disrupted my running schedule. I’ve also been struggling with anxiety. A lot of my normal running routes are off limits because they have long stretches where they are too narrow to support social distancing, and even on the quieter streets there are people not following the social distancing rules. Since I get stressed out by other people not following rules in general, this is way worse now as others ignoring the social distancing rules actually could be bad for me. I know intellectually that being outside means the odds of picking up the coronavirus are quite small, yet I get a tightness in my chest just thinking about it. Even my source of relaxation and stress relief has become an emotional minefield.
On the other hand, we have a comfortable place to hide out, enough food, and we are cooking a lot more than we have in a while. I think the biggest positive is that having my routines shaken up a bit has somehow led to my having a lot more energy around writing than I have had for a while, and I’m really trying to build that into a new habit to carry me forward.
What mistakes do you see NT individuals who identify as autism advocates or allies make?
I think it is hard for non-autistic people to understand how profound the challenges we face are. I know a lot of people who want to be supportive, but usually the first response when I try to describe a symptom is “oh, I get that too” or “lots of people have that” rather than genuinely asking “how is your experience more challenging than that of other people?” Yes, I get that many people would prefer quieter restaurants, but most of them can carry on a conversation amidst the noise and are not in danger of melting down or being overloaded. I think there’s a human tendency to feel that telling someone that they are doing a good job of fitting in will be reassuring. For an autistic person this can be awful. I’m stretching myself to the point of exhaustion, and it still isn’t good enough. Maybe the real problem is that people want to feel that they understand what we are going through, when the truth is they can’t. And this is really harmful because it not only leads to a discounting of the suffering of autistic people, it also leads to a reluctance to accept our gifts in areas where we are capable of outperforming NTs.
What advice do you have for NT individuals who want to support or advocate for autistic people?
My wife used to be on the board of a foundation in Los Angeles called The Liberty Hill Foundation. The way this foundation works is that decisions about what sort of funding gets done, and who specifically gets the funding, are jointly made by panels composed of donors, who are largely from privileged communities, and representatives from the non-privileged communities the foundation seeks to support. Rather than looking at something like poverty or social justice from the outside, Liberty Hill gets into the community and asks the people about what are their priorities and who in the community is doing the best work to solve a problem. This seems like a really great model.
I think that non-autistics who want to help our community should start by talking to us. And by us I don’t mean parents of autistic people, I mean talk to autistic people. A lot of us are very observant, very articulate, and perfectly able to express our needs and desires for ourselves. Let us speak, let us drive the conversation, let us tell you who we think is doing the best work. Sadly a lot of people just look to see what organisation is most visible, or raises the most money, and inadvertently end up supporting groups many autistic people consider to be hate groups. So please make sure that any group that you support is one that is informed by, and features, the voices of autistic people.
What advice do you have for parents who are trying to raise their children with positive Autistic identities? Another way of thinking about this might be, if you were diagnosed at a young age, how do you wish your parents, teachers, peers would have acted differently to help you adopt an autism-positive or autism-neutral identity from childhood?
I think that the best thing someone can do to advocate for an autistic child is to figure out what the rules should be for that child, and insist on them having their own rulebook. This requires making an honest assessment of both the child’s weaknesses and strengths. It isn’t just about making allowances for behaviour that the child can’t control, it’s also about structuring goals and assessment to help that child reach full potential. As a society, we have this unbalanced conversation where a school has to make allowances for things that autistic kids struggle with, but don’t need to offer help to develop areas where an autistic kid might excel if given the chance. I think that it would be much healthier for people in general if there was more understanding that “different” need not be a value judgment, it can contain both limitations and strengths. How weird is it that we have a commonly known and accepted word for people who need extra help, ‘disability,’ but we don’t have a way of talking about strengths without sounding arrogant or elitist?
I get the sense that you really like bears. Where does that come from?
I’m really glad you asked that question! Ever since I was a kid I’ve seen bears as a symbol of strength. Like me, bears are largely misunderstood. Many people have a fear of bears and don’t realise that in general bears are shy, gentle, and tolerant. Also, bears are really smart! When I was in grad school I did a lot of travel around the American Southwest and was really pleased to find that some of the tribes, including the Zuni and the Acoma, carve bear fetishes as symbols of strength. I have given these carvings to friends when they were going through challenging times; and have a few of my own around the house.
I’ve been obsessed with polar bears since I was a little kid. Over the years I’ve accumulated a bit of a collection of stuffed toy bears. I have one polar bear who saw me through some really challenging times and is still a treasured companion. I also have a travel-sized polar bear who has been all over the world with me, including all the way up to arctic Norway to see Polar Bears in their natural habitat. I’ve also spent time in northern Minnesota learning how to do field research on black bears.
Hopefully I’ll get to go visit some more bears soon. Top of the list are Spectacled Bears in Peru (my friend Paddington Bear is a spectacled bear); and Spirit Bears in British Columbia. I feel that speaking from an ursine perspective allows me a comfort zone around being an outsider. People often have some reluctance to listen to autistic people, but I hope that they will be more open to listening to a bear.