Voices From the Spectrum #42: Erin Clemens on

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Photo by Peter Brown

Erin Clemens is an author, speaker, consultant, and advocate on the autism spectrum. She recently presented at a TEDx conference on “The Natural Rhythm of Stimming.” This week she shared some of her personal experiences as someone on the spectrum*. She hopes that by sharing these experiences, people can learn from what she has been through, and apply it to what may help others on the autism spectrum.

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Voices From the Spectrum #43: Sam Crane on Autism Advocacy

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Samantha Crane is the Director of Public Policy at the Autistic Self Advocacy Network’s national office. Samantha graduated from Harvard Law School and served as a staff attorney focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C. This week Samantha shared some of her background studying law and how she uses her experience to publicly advocate for others on the spectrum.

 

How did you first become interested in studying law?

My family always used to joke that I should go to law school because I loved to argue, but what finally convinced me to study law was realizing that it was the best way to make a difference for people with disabilities, especially people with developmental and mental health disabilities. I had originally wanted to become a therapist, but started to realize that I got far more fired up by the idea of fighting discrimination than the idea of being a mental health provider.
That dream of becoming an advocate helped me not only get through Harvard Law School, but also to graduate magna cum laude. I felt like I had to succeed in order to be able to make a difference. But now that I’ve been advocating for a longer time, I’ve found that some of the best advocates have never graduated college. My degree often gives me advantages and privileges, but the most important thing is to always be learning.

What are some ways you’ve learned to self-advocate? Did anyone teach you this, or did you teach yourself?

I’m of the opinion that if you can communicate desire, displeasure, anger, or anything along those lines, then you can self-advocate. By that definition, I was a self-advocate from birth. But of course, people can learn to be better self-advocates and – most importantly – to connect their own experiences to larger public policy issues. That’s one of the things that I work on at ASAN – helping people understand the public policy issues that matter to them so that they can be better advocates. Probably the most important skill, though, is simply refusing to be told to shut up – keep saying your message in as many different ways as you have to, until you find one that works.

Can you describe some of the work you do for ASAN?

I’m the Director of Public Policy at ASAN. It’s my job to track a wide range of public policy issues that affect the autistic community, from health care to community integration, even to Second Amendment rights! Then I work to educate both policymakers and the general public about those issues. On one day, I may be talking to federal government employees about how a particular policy will affect autistic people. On another day, I may be creating materials to educate the autistic community about the same policy.

What are some of the most important ways public spaces can be made more accessible to people on the spectrum?

There are a lot of ways, but often it ends up coming down to sensory accommodations. We often need a place that isn’t noisy, hot, or otherwise overwhelming. Depending on the accommodation, that could be a designated quiet area, or it could be special events that are designed to be less loud than usual. Often, though, even when accommodations do have that sort of place, it’s only available to children. For example, while it’s nice that movie theaters are now offering special screenings of children’s movies, what about those of us who want to watch movies aimed at adults? Sensory needs don’t go away once someone reaches adulthood.

What mistakes do neurotypical autism advocates make?

The biggest mistake that a non-autistic advocate can make is not consulting or including autistic advocates, or assuming that there’s a distinction between “self-advocates” and “experts.” Autistic advocates are also often experts! I’ve seen a lot of advocacy events in which there was an entire panel of speakers, and not a single self-advocate. I’ve seen other events in which there was one token self-advocate on the panel, but they were only asked to “share their story” while everyone else was invited to share their expertise or express opinions on policy issues. We ask non-autistic advocates to pay attention to whether or not this is happening and to speak up. If you’re being invited to an event that isn’t accessible to autistic people, or in which there isn’t meaningful autistic participation and leadership, refuse to participate until that changes.

What’s the most important thing parents can do for their children on the spectrum?

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Voices From the Spectrum #41: William Stillman on Autism and the God Connection

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William Stillman

William Stillman, also known as “The Autism Whisperer” for his ability to connect with and interpret people on the spectrum, is a psychic and an award-winning author of multiple books, including Autism and the God Connection: Redefining the Autistic Experience Through Extraordinary Accounts of Spiritual Giftedness. This week he offered several resources for parents interested in learning more about the autistic connection to the spiritual world.

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Voices From the Spectrum #40: Anna on “Invisible Autism”

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Anna is an autistic blogger and advocate who blogs about a variety of topics related to autism at AnonlymouslyAutistic.net. This website is designed to inspire through the sharing of stories and experiences. Anna tells visitors, “Writing is therapy” and “Hopefully something that I have to share might be helpful to you in your life.” This week Anna shared some of the ways she addresses the specific challenges that come along with being an “invisible” autistic. 

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Voices From the Spectrum #39: Alix Generous on Autism Technology

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Alix Generous

Alix Generous is a professional speaker, neuroscientist, author, tech consultant, and observational comedian. From 2013 to September 2016, she was the co-founder for Podium (formerly AutismSees), a social impact company that creates technology to help high functioning autistic millennials improve their presentation skills. In her 2015 TED talk, she comedically shares how tech improved her public speaking skills. This week she shared some of her personal experiences growing up on the autism spectrum and the current state of autism-related technology.

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Voices From the Spectrum #38: Ada Hoffman on Autistic Characters

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Ada Hoffman

Ada Hoffmann is a writer and computer science PhD student who has authored over 60 published speculative short stories and poems and six papers that she has presented at conferences around the world. Ada was diagnosed with Asperger syndrome at the age of 13, and is passionate about autistic self-advocacy. Her Autistic Book Party review series is devoted to in-depth discussions of autism representation in speculative fiction. This week she shared some of her experience reading and writing about autistic characters and advocating for individuals on the spectrum.

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Voices From the Spectrum #37: Kirsten Lindsmith on Oversimplification in Autism Advocacy

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Kirsten Lindsmith is an author, artist, consultant, and autism advocate from New York City. After receiving an ASD diagnosis at the age of 19, she began co-hosting the online television show Autism Talk TV and speaking at conferences and events about her experience as a young woman on the spectrum. Kirsten has written columns for Wrong Planet and Autism After 16, and was profiled in The New York Times. Kirsten graduated from the University of Massachusetts Amherst with a degree in Vertebrate Ontogeny and Phylogeny. She currently works as a therapist in partnership with Melody of Autism, and as a consultant for behavioral and sensory needs.

This week Kirsten discussed the oversimplification in autism advocacy (classifying it as too positive or too negative), some common misconceptions, sensory sensitivities, and how families can become better allies to people on the spectrum.

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Voices From the Spectrum #36: Kerry Mango on Misconceptions, Mistakes, and Positive Autism Advocacy

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Kerry Magro is an award-winning international motivational speaker who’s on the autism spectrum. Kerry’s books, Defining Autism From The Heart and Autism and Falling in Love after being released quickly reached an Amazon Best-Sellers list. You can learn more about Kerry on Facebook, Twitter and Instagram.

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Voices From the Spectrum #34: Savannah Logsdon-Breakstone on Autism Advocacy

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Savannah Logsdon-Breakstone has led advocacy campaigns at national, state, and local levels. Savannah is an active member of and social media coordinator for ASAN (Autistic Self Advocacy Network) and board member and current vice president of the PA based SAU1 (Self Advocates United as 1). She blogs at Cracked Mirror in Shalott and writes for many other multi-contributor blogs. This week she shared some of her experience advocating for herself and others on the spectrum, offering practical ideas for parents and educators who want to support their children.

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Voices From the Spectrum #35: Vera Didenko on Autistic Burnout

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Vera Didenko is an autistic blogger recognized for contributions in both radio broadcasting, from 2001 to 2008, and federal government defense accounting, from 2008 to 2013. Vera blogs about a variety of life issues relevant to individuals on the spectrum and the neurotypicals in their lives at This, That, and Vera.

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