Aging and ailing autism parents are a band-aid on a growing crisis.
Earlier this month, on August 1, I came across this Facebook post:
“PLEASE REPOST! Lost disoriented senior at Hollywood and Highland. LAPD has already been called but she is scared and no idea how she got here or how to get home. ____ Kim. Her husband’s name is ______. She has a Northridge address on a check but doesn’t remember if she was there last night.”
I instantly recognized the woman’s face.
Five years ago, I unexpectedly embarked on a journey in the world of special needs. At that time, I was a business consultant pursuing my entrepreneurial dream of starting a senior care business. Then, an elderly mother came to me for help as she was desperately trying to find a long-term living option for her 47-year old autistic son named Henry (a pseudonym). He was living at home, had no job, no friends, and frankly, no life. He also had a younger sister with cerebral palsy who required 24-hour care.
At that point, I didn't know much about autism or other developmental disabilities, so I tried to learn as much as I could by spending time with Henry and others with autism. I didn’t quite understand Henry’s autism, but I understood Henry. He was in many ways just like me and everyone else—he wanted a life of purpose and a sense of belonging.
Meeting Henry altered my life's calling, and I now focus my work on serving individuals with intellectual and developmental disabilities.
After I moved to San Diego to work on my first housing development, I lost touch with Henry’s family, but I promised myself that I’d go back and help Henry as soon as I had built something suitable for him.
Then, to my shock, those pictures popped up on my Facebook feed. The “lost disoriented senior” was Henry’s 80 year-old mother.
Within the next 24 hours, I learned the following:
- The family’s home in Northridge was about go into foreclosure.
- The house was infested with rats.
- Henry’s mother frequently disappeared and left Henry and his 84 year-old medically fragile father at home without any support.
- At the age of 52, Henry had no job, no program, no friends and no support. His last regional center IPP meeting took place four years ago.
- Henry’s sister had already moved out of the house.
I sprang into action along with a small group of volunteers trying to help the family. I contacted Henry’s regional center coordinator, and by the grace of God, found an opening in a residential care facility operated by a reputable Korean American organization in Los Angeles. I set up an appointment with the agency and eagerly awaited it. But Henry, who could not grasp the gravity of the situation, cancelled the appointment saying that he wanted to stay in Northridge or move with his parents. We tried to convince him to change his mind, but he was adamant. Henry was making himself homeless and we felt powerless to help him.
After a few days, Henry called and asked for help as he finally understood his family needed to move out of the home right away, and his mother understood she could not take Henry with her. Henry anxiously asked, “Where can I go? Can you help me? Are you going to help me?”
Desperate, I emailed the Korean American group home for a second chance, and cried when I got their response:
“Ashley, ASAP as in today? If tomorrow is okay, you may bring him to our home. I will make a space for him.”
The next day, my heart filled with gratitude, we moved Henry into his new home. A few days later I visited and asked him to list what he liked about his new home. He said:
1. Clean restroom
2. Peace
3. Good housing
4. Food
5. Friends
Years ago, Henry’s parents had shared with me their plan to bequeath their house to Henry and his younger sister, and that they’d make an arrangement with people (i.e. trusted caregivers) to care for them. This was their plan—until it fell apart, and unfortunately there was no Plan B.
Henry was incredibly lucky. He was functional enough to survive for several years with failing parents and very little oversight. When crisis came crashing down, he had the luck of my Facebook aha! moment, and then advocates who hustled to find him help. And miracle of miracles, we found a spot in a good quality group home in the area.
With thousands of Californians with autism now living with aging and often ailing parents, we cannot stop until we find or create more options for them. The need for supported housing and other living options is exploding. From my discussions with regional center staff in many parts of the state, the crisis is growing more acute by the day. “Open beds” have become vanishingly rare—particularly for those with challenging behaviors. You need a Plan A. You need a Plan B. And a Plan C. And all those plans will necessitate more options and funding throughout all our communities.
Do something about the adult autism crisis. Raise awareness about this time bomb that is slowly exploding. Engage your legislators. Push for all sorts of options to serve all of our adults disabled with autism and other developmental disabilities. You will not live forever. Advocate! Plan! Don’t lose hope. I will work harder as well.