Housing for adults with autism
by Paula
An article in Time Magazine last week called Growing Old with Autism described some of the struggles family members go through when seeking support for their loved one with a significant disability. The piece was adapted from a book called Boy Alone: A Brother’s Memoir, written by Karl Taro Greenfeld about life with his brother Noah.
When I was writing my book about my brother, Boy Alone, I wished I had a story of hope and salvation. It is miracles that sell books. There seems to be an insatiable demand for narratives that end in triumph over an affliction: the cripple walks, the mute speaks, the autistic boy laughs and hugs and cries.
We hunger for that uplifting journey, as opposed to the cruel odyssey I had to tell. What did I have to offer? My adult brother, still autistic, still nonverbal, still lost. As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won’t be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do.
At Easter Seals Southern California, we are directly involved in moving adults with autism and other disabilities from state-run institutions into community-based living arrangements. We have assisted several adults with autism, many with severe disabilities such as the ones described in the article. What we have found is that people often flourish, beyond the expectations of even their family members, in a home setting with enhanced staffing support. We have also learned to celebrate the smallest milestones which are often overlooked.
Individuals are supported in all skills of daily living including grocery shopping, cooking and cleaning. Some require only a picture calendar to remind them of the day’s activities while others require hand-over-hand support.
Regardless of support level, ALL are involved in activities of daily life. The respect that is given to any human being when you take the time to teach rather than do, is a value and philosophy that we embrace.
April 24th, 2012 at 12:22 am
Any suggestions on getting started as to the first steps to finding housing in a few years for 23 year old son. No siblings or family to help. Estate planning IS done already, so am on the ball that way.
But, how do I get started? Who do I contact? Would a local chapter of Autism Society help?
Any suggestions would be appreciated.
April 24th, 2012 at 12:19 am
I have a son 23 – only child. Worry every night about what will happen to him. Estate planning already done, but how do I get started to find housing? Any advice on first steps to get going here? Would like to get it in the works and done by my retirement – am 55!
Any advice on first steps would be helpful!
June 9th, 2009 at 8:34 am
I am 57 yrs old. I was found disabled AFTER my benefits expired. I have MANY disabilities and I am SURE I have some form of Autism; I have been begging my HMO for years for an evaluation but they refuse, because I have spent years learning how to ‘cover’ it. But now I am burning out. I am living with my daughter who refuses to even look into it. This is my last place before I have to live on the street. You’re article says you can place people with autism in “friendly” living places. Can you help me?
June 4th, 2009 at 10:45 am
Kevin–your account rings very familiar. We found a place for our son before we hit a crisis. That’s a real hard thing to do–because you, as parents, know you don’t HAVE to. But I wholeheartedly agree–do it sooner rather than later. You have much more control and say over what happens, and you can make better decisions.
I also never imagined our son living outside the home. I had a vague sense that some sort of day of reckoning would come. I concocted schemes whereby he’d live next door or upstairs with a caregiver. My wife understood earlier and better that it would be best for our son to live outside our home one day. And she put me in touch with another father who’d been through the process. Only he’d reached that crisis point where there was a question about whether he could handle his son at home. I resolved that I would not do that and we embarked on our search.
You’e also right about realizing that not everything you do as a parent is the absolute best. The staff at the home have different expectations and that’s been good. In other words, it’s not, or doesn’t have to be, some sort of necessary evil. It can be a terrific thing for all involved. Imperfect at times–but so was his life with us.
June 3rd, 2009 at 3:54 pm
I want to share with you that we did not place our son in a group home because of his aggression or our beginning inability to handle him. These were moments that were fleeting. Our decision was based of our perception that he was outgrowing the house and us.
He was ready to move even though he could not speak and say tell us. It is a lengthy process to find the right place. Often, it must be done quickly in a crisis situation but that was not us. You must be proactive. Let them know as much about him and what he likes and dislikes. We looked at a few, not many, and when we talked to other parents, I looked at them as I listened. I needed to see pleasure or anxiety in their faces. That helped become a deciding factor. Make sure you are comfortable with things. Inquire about distribution of meds and where they are kept when not in use. Ask to see the locked box. How much is required from you: nothing? Or do they want extra bedding, more clothes, etc. Every place is different. Ask all the questions before you agree to placement. In Los Angeles there is a 30 day trial period when the home and the child feel each other out. Good idea. Gives everyone a chance to know everyone.
You know your child and what your child needs. But also be honest to know that in pampering, spoiling, doing for him, you may have done some damage as well. So many kids enter group homes with no concept of sharing or getting along. They’re autistic, after all. It’s always been about them. Step back and let the experts do their job.
Group homes are not the snakepits they once may have been. There are wonderful women and men working to improved the quality of adult autistic lives. Maybe we were lucky but our son entered the house – after a few visits and a sleepover – and never looked back. He found a place where he could be himself.
Weekends home are pleasant, fun and he gets along. Never, never, never would I have ever thought I would place my son outside the home. But I’m in my 50’s, slowing down and I have to know he has a security blanket beyond Mom and Dad’s room.
It’s a good thing. Trust me.
Kevin Larkin
Studio City
June 1st, 2009 at 2:07 pm
None of us speak for the whole lot–but I, for one, can empathize with Mr. Greenfeld’s account in the quoted paragraph. Finding a place for our adult son who has disabilities was agonizing. We’re lucky–he now lives in a great little ranch home with four other residents, plus staff. But economic and political realities always give worry that circumstances can change.
By the time our children become adults, I think we parents don’t need miracles. We just need to know that our children will not be alone in our absence. And that they will be cared for and appreciated for who they are.
Heartfelt thanks to Easter Seals–and all those people and organizations working to provide housing and supports to adults with disabilities. It means more than you can know.