In this commentary, Aja Hannah, an autistic mom of neurodivergent kids, reflects on the economic and emotional toll of a lack of systemic supports.
This commentary is part of the Voices of Disability Economic Justice Project, a partnership with TCF’s Disability Economic Justice Collaborative. Voices of Disability Economic Justice showcases disabled writers’ first-person perspectives on the economic issues that matter most to them.
I have autism. I was formally diagnosed when I was 27, but I had been telling doctors and mental health professionals for years that I thought I might possibly be autistic.
I was very verbal. I made eye contact. I had good grades. I graduated college early with two majors and honors. At the same time, I couldn’t remember faces or names. I couldn’t hear what people said if I looked them in the eye. I had intense social anxiety and general anxiety. Yet many health professionals didn’t take me seriously. I was quirky. I was eccentric. But I wasn’t considered autistic.
Now, my son, who is almost three, has yet to be diagnosed with autism because he is also very verbal. He doesn’t often have major meltdowns. He can make eye contact but it’s brief and sometimes he flat out refuses to do it. He lines up his toys. He doesn’t like the feeling of certain clothes. He is very, very picky with food. He does spinning or flappy hands when he’s excited. I know that all of this means my son needs more dedication and focus from me as his primary caregiver.
Because I feel I cannot stick my son in a daycare if he’s going to be supported and succeed, my ability to work and care for myself has suffered. To be honest, I struggle with burnout. Children can be sensory nightmares for people who are autistic. Those loud beautiful little ones like to touch and climb all over their caregivers, but I cannot put on noise-canceling headphones or take a nap when I’m overwhelmed.
This is especially true with my four-and-a-half-year-old neurodivergent daughter, who has been diagnosed with ADHD. She is constantly in energetic motion, whereas I am easily overstimulated. I experience chronic migraines that have sent me to the hospital several times last year. I take ten pills a day to manage my moods, my pain, and keep me going.
The time spent trying to care for myself and ensuring my children do not suffer academically or emotionally has left me without financial security. I have been denied Supplemental Security Income (SSI) three times. When I am able to work, in that I am not in utter burnout because all of my resources are spent on my children, I am at the whims of a toddler’s needs. Due to the limited availability of proper child care services in my area, I have no one to watch my son even though I qualify for need-based aid.
This summer, my family will be moving to a state where there is more flexibility for child care coverage. Instead of having a limited list of daycares and providers covered by the county or state for those with income-based aid, this state allows me to pick my child’s provider and then the state/county will come in and check that that person is suitable and the space is safe for my child so that I may go to work.
Like every single person in America, I need to work to survive. Even if I did get granted SSI benefits, it would not cover the cost of living—especially as it exponentially rises. When the prices of food and gas started to rise, I maxed out my credit card just trying to keep up with feeding my kids. It feels impossible to cope financially and emotionally and the systems we have in place need to change.
We should be able to more easily access benefits if we need them. We should be able to earn living wages if we’re working. We need to increase the threshold of the poverty level to keep up with rising costs of living. And I should be able to provide my kids with the best possible care—whether I’m the caregiver or it’s provided by a professional—while still being able to care for myself.