Autism, Guardianship, Self Determination, and Housing

Who should decide where we live? Us, our parents, or the government?

Posted May 22, 2017

Adult housing has emerged as a big point of concern for autism families. There are two issues at hand. First is that of guardianship or self-determination, and whether the autistic person is able to choose freely or be subject to the decisions of a guardian. The second issue is with housing options. Some say autistics should be able to live in autistic communities, which sounds like a noble idea; being with our tribe. Others are opposed to community housing because they say it’s a path to the State Schools for the Retarded that existed in my youth. Those places were horrible, and I don’t want a return to those days.

The two issues are necessarily intertwined, and both are complex.

Last year we discussed housing at the Interagency Autism Coordinating Committee in Washington (Disclaimer: I am a member of IACC. The opinions in this article are my personal thoughts, not an official statement of our group.) Autism parent Amy Lutz made a short presentation to our group in which she advocated for herself and other parents as the best guardians for severely autistic children. She also advocated for free choice and support of group housing. Her presentation precipitated some very strong reactions, myself among them. On reflection, I came to feel I was too hard on Ms. Lutz because I was not appreciating the complexity of the situation. I apologize to her for seeming harsh.

I took the position that most autistic people have an ability to choose which place they’d prefer to sleep. Ms. Lutz said, sure, her son could choose but he’d choose based on factors like “which place offered him a candy bar.” She, on the other hand, would choose based on “more important” factors like presumed safety or perhaps her impressions of the staff.

I felt that my dog could choose where he wanted to sleep and a could not see why a person—even a non-speaking one with severe impairments—could not make the same choice. To suggest he could not do so was, to me, suggesting less basic ability in that area than a dog—something I felt was unlikely.

Both our positions provoked outrage, much of which was unintended. Autistic self-advocates and some parents were offended that Ms. Lutz presumed she knew better than her son, and they cited that thinking as an example of taking away a disabled person’s rights. Others expressed outrage at my statement for comparing a person to a dog. In fact, I had not compared her son to a dog. I had expressed doubt that her son’s ability in that area was less than that of a dog. That had not seemed like an offensive comparison to me at the time, but clearly that’s not how others saw it.

Neither of us was looking for a fight; we just believed strongly in our positions and they seemed to collide. With the benefit of time I’ve reflected on our positions and I see merit to both. Ms. Lutz invited me to see her son, and I’ve not had a chance to do that, but I’ve seen a number of severely impacted autistic people with both autism and intellectual disability in group homes where I live. Thinking about those people I see the basis of misunderstanding.

The self advocacy community is dominated by young autistics. Some speak eloquently like Joel Carver, one of my students at the College of William & Mary. Others like Amy Sequenzia communicate equally eloquently through other means—iPads, keyboards, or letter boards. Every autistic person who has the power of communication stresses its tremendous importance. The importance of communication does not depend on a person’s attitude toward autism. Alex Plank sees autism as a difference to be accommodated. Jonathan Mitchell sees autism as a hated thing he wants to be cured of. They evince very different perspectives on autism, but both cherish the ability to communicate their thoughts to the wider world.

Some self advocates assume every autistic person has thoughts to communicate, but not all are able to do so. They may criticize parents for failing to supply their children with the tools to communicate, when in fact the problem lies within the minds of the autistic individuals. There are some people whose intellectual impairments simply preclude forming and expressing complex thought. That is a hard, but very real truth.

Most autistic people can express complex thoughts, even if they require assistance. Most, however, is not all. While I think it’s good to presume competence—as I stated in my original article—we must also recognize that there are some people who are not competent, and cannot communicate effectively given today’s tools and knowledge.

Such people do require guardians, and for most, the best guardians will be family members. To attack parents for “taking over their children’s lives against their will” is both ill-informed and mean. Yet I understand where the critics are coming from too.  I had people make decisions on my behalf when I was a disruptive autistic child with limited communication ability. I resented some of those decisions quite a lot. I’ve seen how guardians abuse and even kill disabled people in their care. Troubling as it seems, statistics do show you’re more likely to be abused by a family member than a stranger. 

None of those things change the fact that most parents love their kids and want the best for them. And most parents are their kid’s best champions. The fact that some parents are bad should not be a reason to turn on all parents that express a wish to be guardians of their children.

We autistic people have to be mindful of this: Just because we can do something, that does not mean every other autistic person can, too. The fact that we learned to communicate as teenagers does not mean someone is a bad parent because she could not teach her son to communicate by the same age. 

Progress in communication will always be limited by available technology, our own knowledge, and the inherent abilities and limitations of the disabled person.

There is no way to determine which autistic people need guardians, and which parents will be good guardians through the Internet. It would be wrong for me to speculate about the intent of Lutz or the abilities of her child without deep personal knowledge.

What’s the takeaway from this? Presuming competence is great, and a noble goal. Unfortunately some small number of people—for a variety of reasons—will remain incompetent. Those people will need guardians for some things, even as we believe in maximum self determination for everyone.

The other takeaway from this is that we should all take a step back before we criticize parents we really don’t know for actions that may or may not be misguided or wrong. Rather than assume parents are in the wrong, we should consider that we cannot determine the truth about their situation from an online conversation.

At the same time, parents might consider that the self-advocates who criticize them are driven in many cases by experiences of oppression, and their advocacy is well meant. When parents say “I have my child’s best interests at heart” and self advocates say “I stand for self determination and independence for all autistic adults” those are both righteous sentiments. They should not be mutually exclusive, nor must they lead to conflict.

Perhaps my perspective is more moderate because I am part of both "sides" in this debate. I am best known as an autistic self advocate, but of course I am also a parent of an adult autistic son, and I've faced issues like these from both sides.

As for housing...I believe all people deserve the right to live in circumstances of their choosing. Some people want to live with family. Some want to live alone, in houses or apartments. Some want to live in communities of like-minded people. That phrase might mean living with other Jewish people, or Mormon missionaries. It might also mean living in a community of autistic people.

I am absolutely opposed to the state warehousing disabled people like prison inmates. That’s what the State Schools of my youth were like, and I’m glad most of them are gone. Opponents of group housing are right to fear the return of such institutions, but that should not prevent us from encouraging the growth of small autistic cooperative living arrangements. Ten autistic folks on a community farmstead could have a beautiful thing and a good, safe life. They could also feel like they're in jail—good outcomes are not assured.

Good situations should be a simple thing to set up, but they are not. And right now good intentions are moot because our government opposes such housing arrangements. They have responded to outrage over the horrible State Schools by withdrawing support for many kinds of group housing. Groups like the Autistic Self Advocacy Network support their position even as it seems contrary to our interests. It's a complex thing, for sure.

Individual housing has its own issues—biggest of which is cost/availability. It's a huge struggle for low income people WITHOUT autism, and adding significant disability makes independent living incredibly challenging. Living in a group environment provides potential economy of scale, mutual support possibilities, and companionship of like people. But the potential for abuse causes many people that you'd expect to be supporters to be opponents.  

We don't question people's right to live in religious communities; why challenge our right to be in autistic communities? The answer of course is that people with disabilities are perceived as more vulnerable. Is that good reasoning, in this context?

We probably can’t draw a simple line. Some say communities of more than six unrelated people should be banned, but a five person community can be oppressive while another housing fifty people may not. As with evaluating parents, we cannot judge a community by reading a few lines on the Internet.

All of us should want legislation that protects individuals with disabilities, while preserving their independence and freedom of choice to the greatest degree possible. We should recognize the path to that goal is not simple, and it’s not black and white.

© 2017 John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences. Besides being autistic himself, he's the parent of an adult autistic son. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Dept of Health and Human Services and many other autism-related boards. He's co-founder of the T.C.S. Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts. 

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick. 

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