The following is the text of CommunicationFIRST Board Member Jordyn Zimmerman’s invited remarks to the US Interagency Autism Coordinating Committee (IACC) on April 14, 2022. The remarks were invited as part of the IACC’s first session in years focused on the communication support needs of autistic people. Jordyn was the only autistic AAC user who was invited to present at this four-hour session. A recording of the session can be accessed here. Jordyn’s presentation begins at 2:26:30 of the recording.
Hi everyone, I’m Jordyn Zimmerman. Thank you, Dr. Daniels and the Committee, for inviting me. It’s great to see a few familiar faces. For visual access, I am a white woman with wavy brown hair. I’m wearing a black blazer and am sitting in front of a window with white curtains and a colorful piece of artwork to the side.
During my presentation today, I am going to share my own lived experience as a nonspeaking autistic person – not a nonverbal person – who has been called “severe and profound,” and as I do that, will include some policy recommendations for the IACC to consider.
I communicate by typing letter-by-letter on an iPad, which then speaks my words aloud. While my words are pre-typed out for the purposes of my presentation today, in day-to-day interactions there are many pauses of silence as I communicate. And while I am extremely honored to share some of my story with all of you, I want to point out that an estimated 30 to 40 percent of the more than 5 million autistic people like myself in the United States also rely on communication support. I think it’s a shame and absolute disservice that I am the only person presenting from an actual lived experience lens in a two-hour session on autistic communication. I am only one nonspeaking autistic person, and while we may have some things in common, I can only share my experience alone, and do not and cannot claim to represent more than a million others.
My first recommendation is that the IACC appoint more nonspeaking autistic members to the Committee, and solicit the views of more AAC users to advise on its priorities.
I grew up in Hudson, Ohio, a small town between Akron and Cleveland. My parents moved to Hudson for the schools, which are considered top notch, unless you are a student who needs services and support. When my brother started school, he flourished. When I began school, my parents had a startling wake up call about disability inequity.
Although the Individuals with Disabilities Education Act expects that students start in the general education classroom, the school seemed to assume that because I couldn’t communicate reliably with speech, and had what they referred to as challenging behaviors, that it wasn’t the place for me. But as we know, legally, I had every right to be there. Access to reliable communication should have been provided to me, but it should not have been a prerequisite for me to learn alongside nondisabled students.
I had a few spoken words in elementary school – “of course,” “of course not,” and some other repetitive phrases – but the process of producing those words was difficult. It wasn’t that I was lazy, socially disengaged, or anything else. It was simply that speech was a motor movement, and my body had to work extra hard to think about the process of producing each word. And even when I was able to speak those few words, I had no way to share my likes, my aspirations for the future, how I planned on changing the world, and the challenges that were happening in my life. When I went home with bruises from being restrained, my family had to rely on the school’s version of events, if they shared anything at all. At most, I was given access to picture cards to request items, but that system never worked for me. As I progressed through school without access to robust communication support, my experiences became more and more traumatizing.
By the time I entered high school, I had been sent to multiple alternative schools, none of which could adequately support me. Without access to the communication support I needed, I communicated in the only way I could. With my body, and what people called “challenging behaviors.”
In 9th grade, I was suspended and restrained with handcuffs by the school resource officer. Another time, I was restrained by a teacher and experienced an acute brain injury after my teacher hit my head against the ledge of a chalkboard holder. There were hundreds of other times I was restrained and secluded in school due to my lack of access to AAC.
Nonspeaking autistic people are one of the largest groups facing restraint and seclusion as a direct result of not having the support and services we need.
This is one reason the IACC must prioritize communication support for students who need it as early as possible, and push legislation that bans the use of restraint and seclusion. Those are my second and third recommendations.
When I returned to the local public high school, during my fourth year of high school, I was once again placed in a room by myself with an intervention specialist. This time, the teacher spent much of her time looking for her next job in front of me. She eventually quit, with just two days of notice. It was an absolute shock to everyone except me. That teacher had no training or support on how to meet my needs.
My fourth recommendation is that the IACC push for educators to be provided with extensive training on getting students communication support as early as possible. This should not be just the responsibility of a speech therapist or special educator; it’s on everyone.
After staying home and not having access to instruction for numerous months, that summer, I returned to the high school. My curriculum consisted of basic activities, such as putting teachers’ name cards in alphabetical order, washing windows at the bus garage, and going to stores to put clothes on hangers. I think it was the way I moved that led teachers to assume I couldn’t understand anything more than basic language. At 18 years old, I was being asked to touch my nose and touch my head, then was given candy for complying.
Eventually, the district decided it wanted to send me to a farm day habilitation program. My teacher and one of the high school assistant principals took me to visit without first informing my mom. At the subsequent meeting with my mom, where this opportunity was presented, they shared how I had already been there and how I loved it. While I deeply enjoyed visiting the animals for that brief twenty minutes, no part of me could envision spending hours of each day in that space.
When we do not have access to effective and reliable forms of communication, people in power make destructive decisions about our lives. This is why my fourth recommendation is so important.
In high school, I received an IQ score of 61. The assumptions underlying my IQ score had such a negative impact on people’s perceptions of me, as well as my perception of myself. Professionals talked around me, thinking I didn’t understand. While there is nothing shameful about a low IQ score, they ultimately were conveying to me that I was a failure in society because of my poor motor skills and apraxia.
My fifth recommendation is that the IACC prioritize policies that make sure IQ tests are not given to people who do not have access to reliable or effective communication. We must constantly remember that speech is a motor function, not a cognitive function.
A few months before my 19th birthday, there was another restraint incident that the district blamed on me, and tried to expel me for. My mom got in touch with Disability Rights Ohio. It was during this time at home, due to the lawyer’s intervention, that I very slowly began utilizing an iPad to help me communicate. Having more reliable communication access via an iPad didn’t immediately decrease my frustrations and need to communicate with my body in ways that led to the staff deciding to restrain me. It was simply one support that I needed, and a support that would take time for me to learn to use. Unfortunately, rather than supporting my use of AAC, my special education teacher used my iPad to bully and make fun of me. She typed in crude jokes about my appearance, and then would play them as if they were my words.
The following summer, my mom found a public school an hour away serving autistic students within a larger district. It was not at all radically inclusive and it was a long drive each day, two things that were very hard for me. However, they helped me in the moment. My local public high school was steadfast in saying they could not support my needs full time. After spending a year at Mentor’s Cardinal Autism Resource and Education School, I slowly realized that Mentor High School, though an hour drive each way, was my best chance.
Even though leaving Hudson High School was, in a way, my choice, I felt a combination of anger and devastation when I first started at Mentor High, not only for myself but for all students who are treated inequitably by a system that should be committed to their education. Segregation in a public school was almost all I knew. I wasn’t used to eating in the cafeteria, or being in classes with twenty other students. For the first couple months of school, I screamed often, banged my head a lot, and ran out of the building. I’m not sure my team fully grasped the challenges I would experience. I also needed solid communication partners to support me to go to my iPad when I was feeling a range of emotions. It took over a year of intense support to become truly fluent at using my AAC to be effectively understood by others.
With collaboration and communication as the keys, I started to develop relationships, and I slowly got used to the new environment. I began adjusting, and for the first time, I was fully immersed in community with others, learning real academics, including math, English, business, law, and others. As time went on, I also joined cheerleading, I participated in clubs, and I even joined the speech and debate team! I was meaningfully included, and felt I belonged. But my access to a free and appropriate public education shouldn’t have only been available an hour away, and shouldn’t have started at age 19.
In May 2016, at the age of 21, I graduated from high school and that fall, I began my college journey at Ohio University.
I really enjoyed college, but people made a lot of harmful assumptions. My actions and mannerisms were constantly pathologized, and I was judged against a different standard. The university presumed I would be unsuccessful, and it set unfairly high standards for me in an attempt to push me out. I persevered, and graduated in four years with a bachelor’s in education policy.
In August of 2020, I enrolled in a master’s of education program at Boston College. In my final semester, I student-taught highschoolers in a substantially separate environment within the Boston Public Schools. It was really challenging to be on the other side, to see students who could be meaningfully included if provided with appropriate services and support, but stuck in the same system I had found myself in, due to systemic and ableist barriers. In many cases, students in my class between the ages of 13 and 15 were still trying to gain meaningful access to effective AAC.
In December, I graduated with my master’s in education, and since that time, I have been working at The Nora Project as Director of Professional Development, helping educators and community leaders think critically about disability as diversity, and the human worth of all people.
Additionally, in the last year, I have been featured in a documentary called This Is Not About Me, and I co-created and was featured in LISTEN: A short film by and about nonspeaking autistic people. I serve on the Board of Directors of CommunicationFIRST, and have keynoted several conferences. Last month, I was appointed by President Biden to the President’s Committee for People with Intellectual Disabilities. None of these activities would be possible, if I hadn’t been given access to robust AAC.
Even though I now have access to AAC, my voice still is often questioned or disregarded by professionals. Last summer, before a minor procedure, I shared that I had an allergy with the anesthesiologist. While my mom confirmed this with the doctor, I was still ignored and later woke up in the intensive care unit, where I spent multiple days.
This is why access to AAC alone is not enough. My sixth recommendation is that the IACC push for and support our right to communicate about ourselves and our needs in the ways that work best for us. We are the experts on ourselves.
As the IACC considers how to better serve the nonspeaking autistic population in its work and recommendations, I strongly urge it to include more nonspeaking autistic people in this planning and consideration. Representation matters in all facets, from education and research, to medicine and funding. More than one or two AAC users should be involved in the IACC. AAC users should be invited to help shape the research and funding agenda in meaningful ways. I believe that most of the research that has been done on people like me to date is deeply flawed. The IACC has a responsibility to fix that. As President Biden proclaimed on World Autism Day two weeks ago, we need to do more “to incorporat[e] the lived experiences of individuals with autism into their research.”
The IACC must do a better job of ensuring that each of us who need it is given access, training, and support to be able to use robust AAC that works for us as early as possible. Without it, we cannot “fully participate in our communities or lead fulfilling lives of dignity and respect,” as President Biden has called for. Too many people like me are written off, and subjected to lives of oppression and segregation. Too many educators and caregivers give up too quickly, or assume we cannot learn to use language when we fail to use spoken words or picture cards in expected ways.
In a system that is designed to fail individuals like me, I count myself lucky. However, people like me shouldn’t have to rely on luck or chance to be seen as worthy, or to have access to reliable communication or inclusive education. While my story is one story, this issue is not about me. As horrifying as my lived experience may be, I’m a relatively privileged white woman. And while my story should not be the standard, it should not be assumed to be unusual. 30 to 40 percent of autistic folks – over 1 million people – need AAC, but the majority of us, especially autistics of color, are still denied access to communication tools and support that are effective for us.
Every day, people like me are being deprived of contributing to our communities, and our communities are being deprived of knowing our humanity. The only thing unique about my situation is that the right people happened to step in when I was 18 years old to push to set up the right communication support and training that worked for me. We have to change this, and I encourage the IACC to lead the way.
Thank you. I am happy to take any questions you may have.