How did you first learn about autism and your diagnosis?
I first learned I had autism while watching a TV show called Dogs with Jobs. The premise of the show was that each episode featured a dog helping with a certain task, rescuing people from avalanches, guiding the blind, sniffing for bombs in airports, etc. Shortly before my eighth birthday, they aired an episode about a service dog trained to help a boy with autism. I had never heard of autism before this, and the boy did not seem much like me. He was non-verbal and barely seemed aware of others’ attempts to interact with him, but he flapped his hands like I did. After the show, I asked my mom if I had autism, and she confirmed that I did.
How did you feel about your diagnosis? Did this change as you grew older or not?
When I first learned of my diagnosis, I felt like less than the other people around me. I thought my mom had not told me that I was autistic because there was something wrong with having autism. I thought that I was condemned to live life as a freak while other kids my age could enjoy a happy, normal life. About a year after I learned of my diagnosis, I began to realize that all people have their own challenges, and, more importantly, that normal does not equal happy. However, I still largely thought of my autism as a personal challenge to overcome, so I did not discuss my diagnosis much with my acquaintances or friends.It was not until high school that I began to see my autism as more of a difference than a disability and something that shaped me in both positive and negative ways. I think this change largely came about because some of my closest friends in high school were also neuroatypical. I really appreciated how they could connect ideas together in insightful, creative ways. If their neuroatypicality contributed positively to their lives, why shouldn’t it also contribute positively to mine?
You’ve described in your article “Autistic teen: How I navigate the so-called “nightmare” of high school” different ways you have learned to adjust to high school life, including the changing relationships and routines. What advice do you have for other autistic teenagers who may be struggling to adjust in the ways you have?
One piece of advice I have is to try to interact with people one-on-one first. When you do that, you can spend more focusing on their social cues and show them you care. Trying to make friends when people are hanging out in larger groups can be more challenging if you communicate differently or have sensory processing issues. Also, for autistics with sensory processing issues, I would recommend trying to interact with your friends in the quieter places around your high school. Instead of sitting in the main quad where hundreds of students are rushing by, try sitting inside a teacher’s classroom. Asking people to move might seem nerve-racking, but you do not have to bring up your autism when you do it. You can simply say, “Can we try sitting over here today? I really want to hear what you have to say during our lunch time conversations.” I think most people will oblige. They will be flattered that you care enough to listen to them. If that does not work out, find more ways you can socialize with your friends before or after school when there are fewer students on campus.
Finally, if you are lucky enough to find friends who really care about you, consider turning to them for advice when you need it. I did that with some of my non-autistic friends in high school, and that is how I learned to do some of the things I mentioned in the article you hyperlinked. However, this only applies if you are comfortable discussing your autism with your friends.
What do you hope neurotypical readers gain from your book How to Be Human: Diary of an Autistic Girl? What about those on the spectrum?
I hope that neuroytpical readers will gain insight into how the mind of an autistic person perceives sensory information and social cues. With this understanding, I hope that communication between neurotypicals and autistics will go more smoothly for both parties. For autistic people, I hope that my book shows them they are not alone and that they can be successful and happy. I know for many years, I did not know anyone else on the spectrum. While I had wonderful friends and family who supported me, I often felt like I was obligated to explain and justify my existence. As a result, I sometimes felt exhausted and lonely. I hope that when other autistic people read my book, they will no longer feel like they have to carry the burdens of being alone or misunderstood. I hope instead they will begin to feel connected to other people who think in a similar way.
What mistakes do you see neurotypical autism advocates make?
Let me preface this by saying that this does not just pertain to autism, but I wish that more neurotypical allies would let autistic people speak. I think it is troubling that there are entire conferences about autism where no autistic people are invited to speak. Why is it that doctors who have studied autism are always invited and those that have lived with autism are not? Does fifteen, twenty, or forty-years of personal experience living with autism not count as expertise? Until neurotypical allies include autistic people in conversations about our wants and needs, we will not live in a society that treats autistic people justly and equitably.
Another big mistake I see neurotypical allies making is trying to neatly label autistic people as high or low-functioning. As some of my fellow autistics have already pointed out, autism is not a linear spectrum but more like a wheel. For example, an autistic person might not diverge too much from a neurotypical’s ability to communicate, but may have extreme sensory processing issues. The labels of high and low-functioning create a dichotomy between autistic people that are likely to be successful and those that are less likely. However, this system misses that many autistic people simultaneously possess incredible strengths and face daunting challenges, preventing us from seeing the unique needs of each autistic person. From my life experience, I can say that success originates from parents and educators’ ability to meet autistic people where they are at rather than the exact diagnosis a doctor gives them.
What are some of the most helpful ways your parents, teachers, or therapists have supported you?
I think that the biggest form of support that my parents, teachers, and therapists have given me is encouraging me to use my passions to adapt and advocate for myself and others. When I was younger, I loved drawing, so my parents and therapists encouraged this. As I said in my book, I began to use art to understand human communication and emotions. Eventually, these communication skills would allow me to engage in self-accommodation, like asking to move to a quieter area to continue a conversation or mustering up the courage to ask my college for academic accommodations. More broadly, art allowed me to adapt to a world where neurotypical people set the social norms.
As I have grown up, my passions have changed. Now, I am more interested in writing, social justice, and public policy. However, my parents, teachers, and former therapists still encourage me to learn how I can use public policy to make a better world for autistic people. (I say former therapists because even though we stay in touch and have wonderful relationships, I have not done autism therapy exercises with them in many years.) I am extremely lucky to have their support as I attempt to advocate for myself and others. I believe it is important for parents, teachers, and therapists to support autistic people on the journey of finding their passions just as they would with any other student. The only difference is that when an autistic person finds their passions, they can use those to engage in the adaptation and advocacy they need for finding success.