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Is independent living over-rated?

By January 15, 2009

I've been working on an article about living situations for adults with autism. The more I hear, the more frustrated I feel. Of course, there are good reasons for frustration: there are very few good group homes, supported living situations or other options for adults with autism. Those that are available have wait lists out the door - or are paid for out of pocket.

But in fact, that's only one reason for my frustration. I'm also finding myself increasing frustrated by the realization that the expectations placed on adults with autism (and, in fact, all adults) are, to a very large degree, the invention of the past 60 years of cultural evolution.

Since when did families assume that each member must live in his or her own establishment, simultaneously earning a living, managing the books, shopping, cooking, cleaning, mending clothes, repairing the house, tending the gardens, and maintaining the car? In fact, this has been the case only since about 1947 - about the same time that the suburbs were essentially invented by Mr. Levitt, and "retirement" was invented out in Sun City Arizona.

Before that time, there was no shame in living "at home" with your parents. There was no shame in paying for - or accepting payment for - domestic work. Multiple generations often lived together, with no embarrassment on the part of any one of the generations. Except in cases of real poverty, no one would ever expect the breadwinner to also manage the household, or vice versa. Except in most unusual situations, it wouldn't occur to a family to find a nice institution where an elderly relative could be "properly looked after." Pick up a novel written before the second world war, and you'll find a completely different perception of what adults were expected to know, understand, and do.

Now, I can't say that I'm advocating a return to the good old days of class warfare. But I am questioning the assumption that it's somehow embarrassing or shameful to live "at home," or to have help in managing a household. I'm questioning the idea that it's "better for everyone" to live separately.

In short, when it comes to adults with autism (or to families in general, really) - is independent living over-rated?

January 15, 2009 at 11:23 am
(1) Brett says:

A quick answer to the question in the title of the post: Yes, independent living is over-rated. Of course, there are many not-so-quick answers to the question as well, many of them starting with the question, “What do you mean by independent living?”

For example, is living in a group home really “independent” living? Instead of having their family for support if they live at home, they have support from strangers. I know which I would prefer.

As you mention, this applies not just to our kids with autism, it applies to all of our kids. Personally, it wouldn’t bother me at all to have my kids, and their families, live with us. It would take some adjusting of expectations and understanding of roles and responsibilities (and a bigger house), but would be worth it for all the fun and time we would get to spend together.

In addition to loving my kids, I actually LIKE my kids and hope to be able to spend a lot of time with them as we all grow older.

January 15, 2009 at 12:05 pm
(2) Dadvocate says:

No. Independendent, or more accurately, “community based” living arrangements are NOT overrated. They are an essential component of a humane and ethical public policy for people with autism and developmental disabilities. For some, living in a multigenerational household is optimal but for many it is simply not possible (due to a wide variety of circumstances.) No one is saying it’s optimal for all but the absence of options that you highlight cannot be ignored. I think your comment that there are “very few” good group homes really ought to be changed to “not enough”.

You are clearly frustrated at the current menu of choices but for many they work pretty well…even if chronically underfunded. I am frustrated too (which is why I think the autism farmstead concept is an important part of the solution).

But if policy makers think all adults are best cared for by their often aging or disabled parents, then what will happen? I think it would be a huge disaster.

In my State, advocates have fought long and hard to try to give individuals with autism independent living options. They don’t have to exercise them but, without choice, were talking institutionalization. That’s not class warfare, it’s a huge step backward.

January 15, 2009 at 1:34 pm
(3) Bonnu says:

“Hell is paved with good intentions.”
Samuel Johnson

Read about the history*

January 16, 2009 at 11:19 pm
(4) Another ASD mom says:

No parent gives birth to a child thinking “Gee it would be cool if they could live in an institution!”

Seriously – are you independent? Would you like if someone else makes the decisions for YOU?

January 18, 2009 at 4:17 am
(5) blogstalker says:

I have always believed in the inter- generational living culture BEFORE I had my first child with autism. I will fight like hell for my children to become independent if at all possible, simply because I want them to have the option. And since I am mostly alone in my side of the family as far as the philosophy of the family commune, we have to prepare to make SOME kind of plan for when our kids will still be here, but we are likely to not be. I love the idea of life sharing if I can find it. But as far as independence as over rated, yes, I agree; I don’t think the post war industrial culture has really helped families although we couldn’t all stay on farms forever. Yes, I would hate to have my independence taken away from me, but I must concede that at sometime during the circle of life, I may need someone to take that function over for me, and I’d better be prepared. Having very close emotional and geographical ties to family can only help with that challenge for all of the members of my clan.

February 7, 2009 at 9:32 pm
(6) Navi says:

I think assuming my daughters will care for my son places an unfair burden on them. If one or both of them chooses to, that’d be great.

What also happens if say there’s some sort of accident and my son is the only one left?

I don’t think I’d mind him staying with us into adulthood, if there was significant amount of respite available. In the good old days of communal living, there were plenty of relatives and neighbors to share the responsibilities. Now it is not so.

Often a good group home would provide not ‘care by strangers’ but care by people who just might understand the disorder better than family. I certainly know the stranger that came into our house in the form of a girl that had worked at Tristan’s summer school is far better with my son than most of my relatives and sometimes she’s better than even myself or my husband. She grew up with an autistic boy who wasn’t very different from Tristan, so to her, he is very typical, while he is odd to most.

That said, communal living is better for our environment.

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