Taking care of autistic children is hard enough, but caring for them when they grow up can test a parent’s resolve like nothing else.
When a Sunnyvale woman fatally shot her 22-year-old autistic son and then herself this week, empathetic parents of autistic children, young or old, spilled out their frustration, anguish and opinions on the Internet and in interviews with reporters.
Trudy Gable, a director at Parents Helping Parents in San Jose, knows the agony firsthand — her 27-year-old daughter is autistic. when she “aged out” of a state system for the autistic that caters to young patients, Gable said she felt a pit in her stomach each time she checked out an adult group home.
“There would be old people there, or their disabilities were different,” Gable said. “I just kept thinking, ‘My child doesn’t belong here.’ And then you’d go through this grief process all over again.”
Autism is a developmental disorder that has a wide range of symptoms, from mild to severe problems with behavior, communication and socialization.
School districts are required to provide education and other services to autistic children until they reach age 22. Parents and experts say after that it becomes much more challenging to find them adequate care, which can be expensive and increasingly scarce due to budget cuts.
Elizabeth Hodgins was somewhere in that process when she picked up a handgun Tuesday and fatally shot her 22-year-old son, George, in his bedroom. Neighbors told this newspaper she was overwhelmed and discouraged by the difficulty of finding a program for him. how hard she tried and why she couldn’t find another program remain unclear.
One of the Hodgins’ neighbors said George Hodgins was low functioning and high maintenance, unable to speak and easily agitated.
On Thursday, police disclosed that Elizabeth Hodgins used her own gun in the murder-suicide. Lester Hodgins, Elizabeth’s husband and George’s father, has not spoken publicly about the tragedy.
While they don’t condone or excuse what Elizabeth Hodgins did, parents interviewed by this newspaper said they understood what would drive a parent of an autistic child to commit such a senseless act.
Parents and teachers of autistic children also said Hodgins’ plight may have been worsened by the deep funding cuts to autism care in California.
Joanna Jaeger, of Milpitas, has an autistic 19-year-old son. she served as a “stakeholder” on a state committee asked to cut $200 million from the state Department of Developmental Services, which runs autism programs.
“There are cuts, cuts and more cuts,” said Jaeger, who also serves on the board of Parents Helping Parents, a nonprofit support group. she said many parents don’t have long-term plans for their autistic children beyond trying to outlive them. only a few families have enough help and money to afford adult services.
“A lot of people, they get pretty desperate,” she said. “We don’t know what caused this mother to do this. But every mother I know who has a child with special needs has a moment just like that. I am heartbroken.”
Brian Darby, who teaches adults with autism and other disabilities at the Independence Network in Santa Clara, gave the state high marks for treating autistic children but less credit for adult care. He said the school, which enrolls about 64 disabled adults, gets $60 per student per day from the state, a reduction from previous years.
“The notion is, OK, they’re ready for work, ready to live on their own, because of all the money being spent on them when they’re kids,” Darby said. But when they are not, he added, “They are isolated,” and their parents quickly become overwhelmed.
According to a 2002 survey by Developmental Services, there were about 20,400 autistic children and adults in state-funded programs, 70 percent of them younger than 15.
Parents and autism experts are worried the problem will only grow worse, as hundreds of thousands of autistic children nationwide become adults over the next decade as states cut more social and medical services.
Anna Wang, of Fremont, a co-founder of the Friends of Children with Special Needs, said 165 autistic people attend the center’s adult day care program, and she has a waiting list of 55. the center opened with 10 families in 1996, she said, precisely because there was nothing around to help her autistic son, Lawrence.
“This is why we parents are always going to Sacramento,” Wang said. “We go to fight for funding.”
Thirty autistic adults now live in apartments on the center’s Peralta Boulevard property and three more in San Jose.
Lawrence is now 22, and Wang was able to figure out a way to have him live at home, work three part-time jobs and play saxophone — all things that make her luckier than parents whose children can’t function as well as her son can.
Elizabeth Hodgins had been wired into the autistic community. her son attended the Morgan Autism Center in San Jose, which he left in December. Executive Director Jennifer Sullivan said Hodgins wanted to find something more appropriate and community-oriented for her son.
It’s unclear what help she may have asked for or received at the San Andreas Regional Center, the state’s go-to operation for local families with special-needs children, including autistic adult children. Managers of the center did not return phone calls Thursday.
Gable, of Parents Helping Parents, said Elizabeth Hodgins was first a volunteer and then a short-time staffer with the group. she even wrote a letter to the Mercury News in 1995 on how the support group had become her “angels,” helping her with the “fear, grief, pain, anger, guilt and anxiety over my son’s condition — and my ability to cope with it.” Hodgins left the group as her son grew older.
Using all her knowledge and resources, Gable figured out how to care for her autistic adult daughter by pooling state and federal money together to pay for a care worker several days a week. But she said not every parent has the energy or know-how.
“She may not have found the right program,” Gable said. “I wish we could have helped.”
Jason Shapiro, 46, who lives in El Dorado County, said he was denied the services he needed for his severely autistic son, Richard Wilson, 23. Shapiro filed two lawsuits demanding financial reimbursement for a care worker and a group home for “supported living” services.
Shapiro said he feels like he is at wits’ end, just like Hodgins must have felt. He and his wife divorced, and he is now unemployed from the financial industry and takes care of his son full time.
“This poor lady,” Shapiro said. “I was denied all these services that my tax dollars go to support. And then you just become a prisoner. you can’t ever leave the person in your care.”
Staff writer Sandy Kleffman contributed to this report. Contact Lisa Fernandez at 408-920-5002. Follow her at Twitter.com/ljfernandez.