(UK) Parents of autistic children: "What happens to them after I pass?"

Jan 7, 2022, Commonwealth Journal: Parents of adult autistic children face hard questions about their futures

As the parent of an adult child with autism, there are certain hard questions you have to ask yourself. How do care for them? How do I keep them engaged and give them a meaningful life? And, perhaps, the hardest one of all, what happens to them after I pass away? These are questions facing two women who also happen to be sisters: Donna Littrell and Melissa Keeney. Donna is the mother of twins who are 30 years old, Nicholas and Lucas Littrell. Melissa is the mother of 20-year-old Seth Keeney. And both mothers, when interviewed independently, echoed many of the same concerns. There aren’t any programs in this area that help keep adults with more severe autism engaged with the community, and there are precious few job opportunities out there for them. “Most people, their kids graduate and they go to college. And then, you’re like, ‘This is the rest of my life, being a caregiver,’” Littrell said. “Autism doesn’t end when they age out of school,” she continued. “It’s been compared to falling off a cliff. What do we do now that they’re adults? There wasn’t anything, and there still isn’t. If they live at home with parents, there’s just nothing for them. It’s all on our shoulders to give them a meaningful life, and we’re trying to do that through employment and continuing education.” The good news is that Donna and Melissa have each others’ backs, as does the rest of the family. Both are single mothers, which makes the situation more difficult, but they compensate by joining together, going on group trips and taking care of one another…. In that sense, Donna was a bit of a pioneer in learning what to do in this situation. And the road was often bumpy. There wasn’t a wealth of information on the subject, with Donna saying she went to the local library and found nothing about it there. The internet wasn’t widespread in the early 1990s, and there were no programs in the schools dedicated towards teaching children with that disability. “I asked the doctor, ‘What am I supposed to do now? How can I help them?’ And he said, ‘Just take them home and love them, and they’ll probably have to be placed out of the home in about 10 years.’ That was devastating to tell a mother,” she said…. “My sister turned 60, and I’ll be 53 this year, and you start thinking about that – probably sooner than most parents would – because you have this child that depends on you. What’s going to happen? Who’s going to take care of them when I pass?” Melissa said…. “We just have to have faith, be smart about it and make preparations. Try to figure out if something happened to me tomorrow, what’s going to happen to my children? Where are they going to be? I have tried to be proactive about all that.”