Voices From the Spectrum #47: Frank Ludwig on Autism Appreciation

Frank L. Ludwig is an Irish author of several short stories, plays, essays, and poems. He writes about autism appreciation, among other topics and believes “Autism is not only a natural but an indispensable part of human neurological diversity.” This week Frank shared with us his experience receiving a late diagnosis, and advice on how to not only respect individuals on the spectrum, but learn to appreciate the autism’s presence in society.

Voices From the Spectrum #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.

Voices From the Spectrum #46 Part 1: Courtney Johnson on Motivation

Courtney Johnson is a writer, public speaker, and Chemistry Ph.D Candidate on the autism spectrum. Courtney is a professional speaker on topics related to her experience with autism, inspiring her audience to achieve at higher levels. She also 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. This week Courtney shared some of her personal experiences growing up on the spectrum. Visit us next week to hear her discuss her advocacy work and how parents can best advocate for their children.

Voices From the Spectrum #45: A.J. Mahari on the Stigma of Asperger’s Syndrome

A.J. Mahari is a counselor, life coach, mental health and personal development coach, and author on the spectrum. A.J. was diagnosed with Asperger’s at age 40 and manages the website aspergeradults.ca, which seeks to talk about not only her own experience and insights as an adult with Asperger’s, but also call attention to the gender differences in females and males with AS. This week A.J. shared some of her experiences as a counselor to other individuals with Asperger’s, the stigma of autism, and how to advocate for people on the spectrum.

 

Self-Diagnosis: An Interview with The Greatest Adventure Blogger

Threedeemee is a UK blogger and mother of an autistic son. Sensory issues and other autistic traits led her to self-diagnose as an adult before a formal evaluation ruled out this diagnosis. Today she blogs at The Greatest Adventure, opening up about her experiences raising an autistic son where other parents can find encouragement, information and support through shared parenting experiences.

Ways to Connect with the Autistic Community

Engaging with individuals on the spectrum should be a foundational part of any parent’s plan to support their autistic child. It’s relatively easy and comfortable to access resources from doctors, therapists, and other parents of children on the spectrum. Communicating with or accessing resources from people who are #actuallyautistic is sometimes, unfortunately, an afterthought; however, there is plenty of information easily available from autistic sources for anyone interested.

Voices From the Spectrum #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.

Voices From the Spectrum #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?