A is for apple, apricot, antelope – I have recited these words, and more, with my twenty-four-year-old Black autistic daughter on countless occasions.
For my daughter, the familiar pattern of the alphabet is comforting. She sings letters to the tune of “Twinkle Twinkle Little Star” or recites them one by one. In moments when things feel unmanageable and a meltdown looms, I launch into our ritual — naming each letter, assigning a diverse set of words. A is for apple, antelope, angry, apricot. We alternate until we’ve exhausted the list and move on to “B.” In a world where so much is uncertain, this ordered sequence has a calming effect.
For those of us navigating the acronyms of the autism industrial complex, the letters of the alphabet are much less entertaining. No longer familiar, they serve as abbreviations for a vast number of autism resources that are part of a confusing bureaucratic web that must be untangled to secure much needed services. ADA and IDEA represent legal protections for individuals with disabilities, including autism (although these are being scaled back). Others, like IEP, PPT, IP, ISP, are acronyms for different organizations, programs, and benefits available to people with ASD. Although not guaranteed, these supports can be obtained from as early as “birth to three” and may be necessary throughout one’s adult life.
During early childhood, the DSM-V (The Diagnostic and Statistical Manual of Mental Disorders) published by the APA (American Psychiatric Association) is used to determine whether or not one meets diagnostic criteria for ASD (Autism Spectrum Disorder). Without an official diagnosis, it is nearly impossible to qualify for support and interventions at school, at home, or in the community. The IEP (Individual Education Plan) is established at the PPT (Planning and Placement Team) meeting. It is a legal document that spells out one’s educational needs until age 22. The IP (individualized plan) or ISP (individualized service plan) is set up when an individual transitions into adulthood. Created by a team composed of parents or legal guardians, the individual, and their case manager, this state sponsored plan documents both need and eligibility for different programs and supports. It is a dynamic roadmap designed to evolve along with lifelong personalized goals and objectives.
Then there’s DSS (the Department of Social Services), DDS (Department of Developmental Services), and a host of other agencies and institutions that oversee, regulate, and fund programs that are available for people with ASD and their families.
Unlike the playful recitation of the alphabet, these letters often have life or death consequences. For instance, “A” and “N” in the world of agencies that serve autistic communities equals “Abuse and Neglect”. Each state defines what this means. In Connecticut, abuse involves the “willful infliction” of pain, injury, or mental anguish, such as psychological or sexual abuse. Neglect means purposefully withholding necessary services for health and safety.
As a parent of a young black woman with ASD, this is my worst nightmare. For instance, when my daughter was quite young, she was unable to vocalize if something happened to her. Seemingly, out of nowhere, she was afraid to go to school. I knew there was a reason, but articulating why posed a challenge for her. After piecing clues together, I discovered that another student was bullying her at school; she was expressing her distress by crying, saying she was scared, and refusing to get on the school van.
I worry about what will happen to my daughter when she is not with me, not to mention after I am no longer able to advocate, protect, and support her. And, statistics show, women and people of color often get diagnosed much later than their white male counterparts, if they get diagnosed at all.
The danger of not knowing that someone has autism is misreading their non-neurotypical responses. Instead of getting support and help, they may be perceived as dangerous. This is not merely a possibility. It is a documented reality. For instance, I think of Elijah McClain, a young man walking home from a local convenience store when someone called 911. This anonymous caller described Elijah as a “suspicious” black man, flailing his arms, wearing a mask (Was he was listening to music—could this have been dancing? It didn’t matter). Instead, police detained him on the street and paramedics administered a lethal injection of ketamine. He was murdered for acting differently.In similar cases across the country, black men with autism have been policed, incarcerated, and even killed because of their neurodivergent behavior.
In 1970, psychologist, Dr. Bernard Rimland focused his research on the diagnosis of, and the biological and behavioral approaches to treating autism. He established Autism Awareness Day to promote education and advocacy.
Two years later in 1972, the Autism Society launched the first annual National Autistic Children’s week. And, in 1988 President Ronald Reagan signed the first presidential proclamation for National Autism Awareness Month, increasing its recognition and observation across the United States.
Nearly twenty years later, the United Nations declared April 2nd as World Autism Awareness Day, hoping to educate people across the globe.
Every April, we celebrate Autism Awareness but for those of us entrenched in the world of autism spectrum disorders, 24/7, we are always aware that autism cannot be relegated to a single day, month, or year. Autism is a way of being in the world. And, although things are slowly changing, the world is not always open to our differences.
