Cindy Godwin

She’s sitting on the sofa playing video games. Dirty dishes are everywhere in the kitchen, pizza boxes and empty soda bottles cover the countertops, the trash is overflowing and stinks, the patio is littered with cigarette butts, laundry needing to be done is stuffed into black garbage bags. The notice of a certified letter, announcing that she has been dropped from her therapeutic art program for non-attendance, sits on top of a stack of unopened mail and unread handouts from her counselor.

This was the scene I walked in on recently. “She” is my 29-year-old daughter. Her latest diagnoses are pervasive developmental disorder (now included as an autism spectrum disorder) and fibromyalgia. The place is the townhome my husband and I bought for her to live in, thinking it would be an affordable “group home for one.” But her former helper/roommate moved out, and while our daughter doesn’t want to live at home or in a typical group home, the reality is she can't take care of herself.

Hundreds of thousands of parents are suffering similar combat level stress daily as we care for children with autism. The Centers for Disease Control and Prevention estimates that one in 45 children ages 3 to 17 has autism — that's roughly 1.5 million kids.

As the number of autistic children grows, so does the number of autistic adults. Their needs remain much the same as they age, yet the support they once received fades. Though families like mine are feeling it most acutely, this is an issue for everyone to consider. The tsunami of adults with autism is coming.

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Programs for autistic adults vary from state to state and community to community, depending on when they were diagnosed and whether they are “high” or “low” functioning. But there is widespread agreement that there simply are not enough providers and options. The needs of adults with autism “far exceed the available resources, leaving a generation of individuals with autism and their families in programmatic, financial and personal limbo,” researchers Peter Gerhardt and Ilene Lainer wrote in 2010, and that remains the case.

Just this month in Iowa, Hillary Clinton announced her plan to support people with autism across their lifespans, bringing needed attention to this problem. One of our biggest challenges is finding affordable, supportive housing. A quality residential program costs more per year than sending your child to Stanford. Imagine paying $50,000 or more annually for the rest of your son’s or daughter’s life, with no graduation ceremony in sight.

My husband and I were fortunate to have the means to purchase the townhome, and we could afford to hire the private psychiatrist who helped us secure Social Security disability benefits for our daughter. And because I'm retired, I have more time than families with fewer resources.

For many families, there is no choice other than to keep their adult children at home. According to a National Autistic Society survey, 70% of adults with autism need support services, and 49% live with their parents. Very few adults with autism live fully independently. Family members suffer financially and emotionally from this burden, typically with little or no support. And, like us, many families are also caring for aging parents and other family members at the same time. I also care for my 95-year-old mother and my disabled husband.

While my daughter receives monthly disability benefits, the below-poverty-level amount doesn’t begin to cover the cost of the services she needs. Typically, I take my daughter to the grocery store weekly and help her shop for healthy food that is within her budget. I take her to her doctor’s appointments and take notes about what she should be doing. I manage her finances and all the paperwork associated with her benefits. I deal with weekly crises, such as the time she fell off a ladder while changing a light bulb, and the time she was sheltering a drug addict from the addict's abusive boyfriend.

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I continue to try to find out more about her diagnoses, both physical and mental, and what can be done to help her, and me. I clean her toilet. I take her anywhere she needs to spend money because we keep her bank card so she doesn’t run through all her money as soon as she gets it. The mental and emotional stress is constantly with me, with no end in sight, and no solutions for when I am no longer able to help my daughter.

There do exist a few innovative residential/service options for a small number of autistic adults, such as Echoing Hope Ranch in Hereford, Ariz. It's a non-profit working ranch for teens and adults with autism founded in 2009 by a parent, Marla Guerrero. Combining Medicaid, Social Security, donations and some parental contributions, Guerrero has developed a model program for seven full-time residents who are capable of some independence. She helps them engage in productive work both on and off the ranch, such as caring for a garden.

That's just one example. The advocacy group Autism Speaks sponors a competition called the House to Home Prize, which will hopefully produce more. The non-profit is seeking “groundbreaking ideas" for how to house and support adults on the autism spectrum. March 1 is the deadline to compete for one of three $50,000 prizes.

"Groundbreaking ideas" cannot come too soon for my family, and many others.

Cindy Godwin is a retired marketing executive in Tucson and a Public Voices Fellow with The OpEd Project.

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