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‘Safety Net Full of Holes’ Leaves Many Moms of Kids With Autism to Face Poverty
The autism epidemic has created a pink-collar ghetto, an under- and unpaid kitchen table industry that has gutted a generation of women's earnings. We have to create a fair and reasonable system to compensate Moms whose whose Social Security hours were wiped out by autism.
By Kim Rossi
Last Fall I received a call asking if I would be interested in tossing my hat in the ring for a seat on the Interagency Autism Coordinating Committee (IACC). My first response was to feel honored. My second was, “How could I? I can’t leave my daughters, nor can I afford the travel.”
Time and money.
I submitted a resume, and was not ultimately chosen. I felt relief. That surprised me. We have a great new IACC team and I know they will fight for all of us.
During the State of the Union address, President Donald Trump talked about protecting Social Security and Medicare, the American retirement safety net. Social Security benefits are a function of work credits earned through taxable employment.
From Fidelity Investments:
“How your Social Security benefits are calculated can seem mysterious, but understanding a few essential facts may help in determining your claiming strategy. Your benefits are calculated based on your highest 35 years of earnings; they don’t have to be consecutive years or before age 65.”
I, like millions of autism Mothers, voluntarily removed myself from earning a steady paycheck commensurate with my education and career track when my daughters were diagnosed in 1996 and 1999.
My Social Security benefit was doomed before I turned 35. I had 10 good earning years before autism took me out of the full-time workforce. All years since have been nothing, negligible or far less income than my peak earning years in my late 20s.
The autism epidemic has created a pink-collar ghetto, an under- and unpaid kitchen table industry that has gutted a generation of women’s earnings.
There’s been a TikTok video circulating that reminds folks that the majority of the work in our community has been borne by women who did it for little or no pay. That the autism world would collapse without Moms stepping in everywhere to help their own kids and each other.
Viewing it is what got me thinking. Where’s the lie?
Women whose Social Security hours were wiped out by autism will pay dearly. Many will face poverty in “retirement.”
Most of us will never truly retire, while still caring for our adult children into our old age.
I put forth the following as a trial balloon to IACC: Give women full 40-hour Social Security work credits at a reasonable rate of pay for every week after their child went on Supplemental Security Income (SSI) at 18. Add hours to augment the 35 years. SSI is provable total disability.
This is just one metric we could use. There’s also SSDI (disability income). I’m not a policy expert. We have to create a fair and reasonable system.
Blogs. Books. Conference speakers. Booth staff. Rescue Angels. TACA Team outreach. National Autism Association teams. Autism Society and CAN! and DAN! volunteers. Yahoo groups (going back 25 years). Even IACC itself.
How many hats do you wear? Wife. Mother. Grandmother. Caretaker. Therapist for every modality. Communication partner. Teacher. Administrative manager. Behaviorist. Individualized Education Program, or IEP, writer. Dietician. Three-shift group home staff and manager.
All for zero or little pay.
There is also, of course, tremendous added stress on the family’s breadwinner to pick up the slack. Men who had to turn down a promotion or relocation because of the voracious needs of autism.
Just as there are families where the man or partner dropped or greatly reduced his own career while Mom was the breadwinner.
There will be many permutations, though women have borne the brunt. The outcome is the same: a safety net full of holes.
We need to acknowledge the lost income, empty nest eggs, forfeited retirement benefits. We need to honor the sacrifice — which every single one of us would make again.
For our children.
Kim Rossi is Managing Editor of Age of Autism and a single parent to three adult daughters with profound, day program autism. They live in Connecticut.
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the views of Children’s Health Defense.
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