I am a formally diagnosed autistic woman and the parent of an autistic adult who I parented through early intervention, public school, post-secondary experiences and now, into adulthood as I support him navigating through rehabilitation services. I am a social worker and researcher, but when it came to parenting while disabled, I want to be frank: It nearly broke me.
A handful of quality educators and mental health providers helped me to hang on by a thread. Late in our shared journey, a sisterhood of neurodiverse-friendly groups of mothers provided me the emotional support I needed. I continue to benefit from and mentor other disabled parents and other friends of disabled folk. Otherwise, I am not sure I would have survived, and I am confident if I had not held on, my son would not have the life he currently lives.
It was difficult. As an autistic, despite being an extrovert (yes, we exist), I could not navigate the social expectations to collaborate and benefit from engagement with other parents in the earliest years. I naively believed that the educators had his needs at the highest of priorities. The more knowledge I gained, the more aware I became of his needs and the void that essential services should fill. And knowing more than the administrators and educators offended them and often resulted in reactivity. Lastly, I was in crisis, suffering under multiple misdiagnoses and medical maltreatment not only limiting my effectiveness for my son, but also for my oldest child.
Painfully, as my daughter moved to university, I relocated with my son, leaving my husband behind in a desperate attempt to give him a “free and appropriate public education.” Sadly, the first location was worse than where we had been. My son was socially promoted past a grade level, abandoned, and then stalked by a retaliatory teacher resulting in significant trauma for us both. Not only had the autism community failed us, but truly, the despicable behaviors of the district caused me and many of our supporters to lose absolute faith in human kindness.
After two lost years, we landed in a tiny suburb of Nashville with folks with great hearts, a willingness to learn, a strong inclusive philosophy, and an approach that gave him a fair opportunity. While this was his best public school experience, it was still far from perfect. Evolving from a diagnosis of autism and intellectual disability to then, PDD-NOS with intensive one-on-one academic support, he graduated with honors (and gloriously enjoyed time as the ‘hydration consultant’ for the hockey team, experiencing “guy” culture for the first time in his life.
In the midst of all of this, in 1999 I was finally diagnosed with autism. It was a welcome relief and a way to obtain proper services and to regain my mental wellness after years of mistreatment and malpractice. But it was too little and very late. I had the responsibility of raising not one but two neurodiverse children (my oldest has ADHD), and I could not shake the false belief that I was failing them (not the reality that the systems had failed us all). I continued to bob and weave into guilt and shame, knowing I was not the best parent either of my children deserved. One of the reasons I was failed was that I did not know about my own entitlements, as a disabled parent, to my own accommodations and supports.
Protections for Disabled Parents
In 2012, the National Council on Disability issued an exceedingly well-cited, 354-page white paper called, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.” The purpose of the paper was to discuss the challenges and barriers that disabled parents experience, despite disability laws that should protect them, as related to child welfare, parenting rights, reproductive supports, adoption/fostering and family supports. Despite its thoroughness, references to the intersectionality of advocating for one’s disabled children while disabled was not addressed—particularly in regard to parental engagement in IEP meetings. Shockingly, it did not mention special education meetings in any way. And of course, none of this content addressed the social/emotional needs of disabled parents.
Several laws support disabled parents. The Americans with Disability Act (ADA) ensures “full participation” of disabled persons. ADA Title II prohibits the exclusion of disabled persons and requires that there can be no charge for modifications, accessibility, or interpreter services, including asking for copies in advance, requesting time for reading materials during the meeting or being rushed during the meetings denying processing time. ADA Title III guarantees the “same eligibility” to participate and have, “reasonable modifications in policies, practices, or procedures,” to access services. The Rehabilitation Act of 1973 states that no one who is disabled shall be “excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”
One of the laws that protects the rights of all parents, but that is especially effective for disabled parents, is IDEA or the Individuals with Disability Education Act. It guarantees that parents are equal partners in the IEP process, and it allows you to bring not only an advocate for your child, but anyone you might need to assist you.
There are many other rights under IDEA such as, “ensure that the parent understands the proceedings of the IEP Team meeting, including arranging for an interpreter for parents with deafness or whose native language is other than English,” (including providing specific disability supports) without fear of retaliation.
In my opinion, disabled parents particularly need support for any and all meeting,s but most importantly, prior to signing the first IEP (as this is the best chance you have of getting needed services) and if the IEP process breaks down. The need for attorneys and/or highly skilled advocates to support us during mediation, administrative complaints, manifestation hearings and due process is very critical for the disabled parent advocate as well as the child they represent.
In closing, I believe that agencies should be providing parents with systems navigators (social workers are keenly trained to do this) to assist us in navigating systems—especially in those fragile but critical early years. A lack of culturally competent support advocates for disabled parents, and the expectation/insistence that parents become autonomously functioning in a meeting despite clear cognitive, social and possibly, emotional difficulties with IEP meetings and other systems is unacceptable. This is all compounded if these persons are multiple marginalized (as in non-white, LBGTQ+ and/or English as a second language users).
Advocacy organizations can help. Get to know the individual and their triggers and help them to scan the environment before the meeting convenes. Know we can be “scared stiff,” unable to articulate difficulties they are experiencing from sensory and environmental difficulties in “real time.” Fully and meaningfully create and track meeting goals; creating a visual schedule or checklist to make things predictable can help. Be willing to quickly and even abruptly ask for a break if a parent is not responding in a way that suggests you’re on the same page, or if you, as our second set of eyes, see subtle abuses taking place. Be direct, concrete and straight forward. Trying to be subtle, generous and kind will just keep the information muddied in our minds. Give us clear choices: if/then options. Lastly, help us to know when it is hopeless. This was the most important support I needed and it came far too late. I needed to leave my district(s) far sooner than I did. Advocacy groups must establish specific funding and resources to offer ongoing support for parents who will require services rather than embracing a “learn as you go” model. This would be the same as presuming that parents with physical disabilities would “learn” to use steps.
Dena is a PhD Candidate at Adelphi University and an Adjunct Faculty Member for Towson University teaching Transition to Adulthood in their Autism Certificate Program. She is the co-chair of the Autistic Researcher Committee (ARC) for the International Society for Autism Research (INSAR). She has published multiple book chapters including one in Spectrum Women: Walking to the Beat of Autism. She also co-facilitates the Autism Women’s group for AANE. She has spoken for events around the world, including The United Nations (Geneva and US), Cambridge, Russia, Fonden Samrådet-Denmark and Scotland among other places. In 1999, she was awarded the Cathy Pratt Professional of the Year Award from Autism Society of America. She seeks to live an authentically embodied autistic life as a scholar, wife, mother and grandmother.