Autism Interview #63: Russell Lehmann on Never Giving Up

Russell Lehmann is an award-winning and internationally recognized motivational speaker, poet, author and advocate who happens to have autism. His words have been featured in the USA Today, LA Times, NPR, Yahoo! News, Autism Speaks and archived in the Library of Congress.

Russell currently travels the country spreading hope, awareness, acceptance, belief and tolerance in a raw and dynamic fashion, while also setting his sights on erasing the stigma and stereotypes that come with having a disability. This week he shared some of his experiences as an autism advocate and poet.

Autism Interview #60: Michael John Carley on the Current State of Autism

Michael John Carley is an internationally-recognized autistic author, speaker, and public advocate. He is the founder and first Executive Director of GRASP, the largest organization in the world comprised of adults on the autism spectrum. He’s also the former United Nations Representative of Veterans for Peace, Inc. He’s been featured in many national publications and media outlets and has written several books on autism. This week he shared his perspective on the current state of autism in America, some of the differences between his experiences and those of his autistic son, as well as advocacy tips for parents.

Autism Interview #55: Haley Moss on Growing Up with a Positive Autistic Identity

Haley Moss is an artist, author, and autism advocate attending law school at the University of Miami. Her work is nationally recognized, and she is the author of “Middle School: The Stuff Nobody Tells You About” and “A Freshman Survival Guide for College Students With Autism Spectrum Disorders.” This week she shared how she grew up with a positive autistic identity and offered suggestions of ways parents and family can improve autism acceptance and advocate for their loved ones on the spectrum.

Autism Interview #51: Brent White on Autism Advocacy

Brent White is autistic, dyslexic and multiply neurodivergent. He designs and directs adult programs for neurodivergent young adults for a non-profit in Berkeley, California. Programs include an adult transition program for the he designed for the Berkeley Unified School District. Brent White is a grassroots researcher, scholar and advocate. This week he shared some insight for non-autistic parents and other autism advocates who are trying to support their loved ones in the most respectful and meaningful ways.

Why I Can’t Call Myself an Ally (and Neither Can You)

autism ally

It’s a point of contention between some people on the spectrum and neurotypical autism advocates. How we advocate really is just as (if not more) important the intention to simply advocate at all. In particular, let’s explore the right to identify as an autism ally and the traits needed to genuinely support those on the spectrum. Not everyone who calls themselves one is really on the side of autistics. In any disagreement, a dose of humility and introspection is needed if anyone is expected to learn anything or if any progress will be made (See my previous post: The Roles and Responsibilities of the Neurotypical Autism Advocate). This week I’m asking neurotypical parents to review why autism advocacy issues exist and consider ways to improve their efforts. The more I read and listen to people on the spectrum, the more I learn about better ways to support and accept them. Let’s listen to autistic advocates and be open to change.

Autism Interview #46 Part 2: Courtney Johnson on Autism Advocacy

Courtney Johnson is a writer, public speaker, and Chemistry Ph.D Candidate on the autism spectrum. Courtney manages the website AutismAchiever.com, where her goal is to share information she has learned through her varied life experiences to help individuals on the spectrum reach their full potential. Last week Courtney shared some of her personal experiences growing up on the spectrum. This week she discusses her advocacy work and how parents can best advocate for their children.

Autism Interview #42: Erin Clemens on Autism Acceptance

 

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.

Autism Interview #43: Sam Crane on Autism Advocacy

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?