Autism Interview #83: Mikhaela Ackerman on Advocating for the Autistic Perspective

Mikhaela Ackerman is an autistic writer and speaker. She blogs at Edge of the Playground where she shares resources for individuals on the spectrum and the families who support them. Mikhaela earned her Juris Doctorate in law in 2016 and plans to use her legal skills to advocate for others on the autism spectrum. This week she shared information about her advocacy work and how neurotypicals can be more aware and accommodating of sensory sensitivities.

What kinds of advocacy work do you currently do? Your Mighty bio mentions you have a Juris Doctorate in Law. Do you advocate for others on the autism spectrum?

Currently, I assist others on the autism spectrum with adulthood transition through volunteer work. I appear at transitional career fairs and other educational seminars to help educate those not on the autism spectrum about our experiences and offer advice to those who are autistic, helping them find ways to successfully navigate the workplace and other adulthood changes. I also recently became a yoga instructor and use yoga to help people on the autism spectrum with anxiety, gravitational security, and coping with sensory overload. I have found yoga to be extremely helpful in my own life and have enjoyed sharing it with others. I plan to use my law degree to create legislation that will provide effective and meaningful resources we, as autistic people, need not only throughout our childhoods but through all stages of life.

You’ve written about how your mother helped you gain the confidence to try new things and reach some of your goals. Do you have any advice for parents who are trying to encourage their autistic children to “step out of their comfort zones” in order to try new things, socialize, reach new goals, etc.? In your personal experience, when did you feel your mom was helping you, and when did you feel like it was too much (too stressful, too scary, too overwhelming)?

Even in times when I felt I was being pushed harder, I am grateful for those times because it propelled me forward. For example, some sensory integration therapy was difficult for me at the time, but touch would still be painful if I had not learned ways to cope with that sensory sensation.

I always knew that when I was trying new things, there is no shame in failure–the important part is that you tried. You can always find another way and a way to accommodate. Autistic brains are different, and therefore society often does not have an accurate way of measuring or predicting our potential. Always try first and then step back and accommodate or find another avenue if it proves to be too much. There is no way to fully know capability until you are allowed to try. Like everything, it is a balance.

You’ve compared living in the neurotypical world to being placed in a Beijing subway station without knowing any Chinese. This sounds like an eye-opening metaphor. Autistics work so hard to navigate this “language” barrier every day. How can NTs do their part to better communicate, socialize, or merely exist with the autistics around them?

I think that the more educated you are about how our brain processes, the more you will be able to effectively communicate with us. Watching children typically develop now that I am an adult, I fully realize just how different our minds work and why neurotypical parents may not know what to make of some of our behaviors. While typical children crave social interaction to learn nonverbal language in early development, for me the experience was too overwhelming, and I craved solitude. While this looked like loneliness, it was, in fact, a way for me to reset and find my center to escape the sensory overload around me. I could not naturally pick up on social behavior because of the sensory bombardment. With no way to filter sensory experiences of light, taste, touch and sound, it is difficult to focus in on the nuances and details of nonverbal language. I experience everything at a maximized level, like having the volume turned up full blast at all times with no way to adjust the volume. Therefore, I often cannot process specific details.

Understanding this can help in how you relate to us. One of the biggest things that helped me is when people say what they mean and mean what they say. I am not good at guessing or picking up on specific emotions of other people. However, I am a very caring person. It is helpful when someone tells me how they are feeling and why, so I can best react. I also always appreciate gentle cuing and assistance from other people when it comes to social cues. Simple things like someone telling me “I think Sally is trying to say hello to you, I see her waving from across the room,” or “I think Sally is probably sad because her car broke down, but she’s putting on a happy face,” make a world of difference. These are not in a demeaning tone or assuming I’m incompetent, but rather just cuing on social observations I may have missed. That then allows me to respond in my own way while taking the pressure of uncertainty of the nonverbal language off me when I’m unsure.

Tell me about your blog Edge of the Playground. Why did you start it and how will it serve readers?

Edge of the Playground launched in March of 2018. I knew I always wanted to give back and share my story, but was never sure of how or when. This year, I was finally in a place where I was not only ready to tell my story, but inspired to help advocate for the community. Edge of the Playground is a resource for both autistic people and their loved ones and communities. For autistic people, I provide resources with tips and strategies I have found helpful in transitioning into adulthood as well as other phases of life. My whole life I have had to find my own road maps and ways to accommodate for my needs without much direction since not much assistance was available when I was growing up. I hope to share what I have learned along the way.

For those who are not on the autism spectrum, I write about my own experiences so that they may better understand what a day in our life is like and how we think. The goal is to bridge the gap in understanding between autistic and neurotypical people and build a community of support. I also appear for speaking events and educational seminars to give guidance to others on the autism spectrum seeking help with life transitions and the community.

In what ways did you need to self-advocate in college?

In college, I went through a big adjustment period. Schedules and routines were not predictable which was very hard and I had to make a much bigger effort to both socialize while also finding alone time.

It was important to learn the confidence to approach professors when I was unsure of expectations in an assignment on a syllabus or needed additional testing time. I found that most professors are willing to help you. Student life is also a wonderful resource and can help not only with accommodations but provide strategies for anxiety. Many colleges have early start immersion programs where you go with a smaller group of people before actual classes start to take one or two classes. I highly recommend this because it helps you make friends before the overwhelming number of students come to campus, learn your way around the school, and learn what to expect.

I have written a college transition guide, which can be found here: https://edgeoftheplayground.com/2018/06/05/an-autistics-guide-on-transitioning-to-college/

What mistakes do you see neurotypical autism advocates make?

We process the world entirely differently, however that does not mean we are all that different from you. At our core, we are still human. It is important to remember this because all too often I see people talk about autism as a disease or dehumanizing people on the autism spectrum without even realizing they are doing so. As an autistic person, we take things very literally and often personally. To be an effective ally, considering word choice and communication is extremely important. Know that we will interpret things differently and that we wish to be treated with the same dignity as anyone else. I think that we need to create a shift in society to start seeing autism not as a condition, but rather focus on how we can best support the needs of each individual while seeing them as people. Just as you would not tell a grieving person how much grief they are allowed to experience based on who they lost, all the medical reasons for the grief, or reasons their grief isn’t as bad as someone else’s or too much compared to someone else’s you should not talk about autism in such a way. There are hard parts of autism and even disabling parts, but there are also great joyous parts. We always need to remember there is a person behind this topic.

Also be careful in determining what is your story to tell. Often, as parents or children our stories overlap with one another. There are some vulnerable aspects of autism that should remain within the power of the autistic person and that is their decision of whether or not to share with the public.

Who is your best ally and why?

My mom and sister have always been and forever will be my best allies. All three of us have an extremely close relationship. We are a team. There has never been a moment in my life where they did not support me or assumed I could not do something. In fact, they always thought the opposite: I was capable of anything I set my mind to, even if that meant I had to take a different road than other people. Whether it was my sister playing in the waiting rooms of hospitals during my therapy sessions and joining me on the therapy nets, or my mom helping me study and take the SAT three times so I could get a math score high enough for colleges to consider me, they have never left my side. They completely understood that my journey will look different but it isn’t any less valuable. This world measures success based on a different neurotype than I am. But I will continue to make my own path and find my own ways in.  

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3 Comments

  1. Reply

    An excellent article and interview. Also, I think it is amazing how you’ve chosen to help others understand and help other Autistic individuals better cope with life through sharing as well. It is inspiring to connect with you and follow along in your work and blog Mikhaela.

  2. Reply

    Your path and mine seem very similar — I too am trained as a yoga teacher (I actually had my own centers in NYC and VT for a decade) and an advanced degree (Ph.D.). I am hoping my son can find similar ways to live his life fully intellectually fulfilled and finding ways to advocate. I’m just working on his SAT prep with my son, just as your mom did with you (a difference may be that I am also neurodiverse).

    In any case, loved this interview. Thanks for sharing!

    All the best,
    Full Spectrum Mama

  3. Reply

    Great interview! I was diagnosed with ASD two and a half years ago at the age of 52. I grew up in the ’70s when autism was considered a psychological disorder. I remember the intense anxiety I experienced when going to gym class. Disrobing in front of classmates was a terrifying ordeal which prompted me to come late so I could change clothes in an empty locker room. I am grateful for my diagnosis, at the same time I harbor contempt toward neurotypicals in power for their indifference and ignorance regarding those of us who have gone undiagnosed all of our lives. It is my perception that the neurodiverse who are undiagnosed are often seen as “eccentric” or “creepy” by society. This only compounds the struggles we face in the everyday “grind” of life. I could go on and on (hyper-focused).
    Thank you for sharing. You are as beautiful inside as you are physically.
    You are appreciated.
    Bob M.

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