Star Ford

Essays on lots of things since 1989.

Things to do when I grow up

on 2011 December 12

This is what I want to do when I grow up. I want to take the saying “nothing about us without us” and make it real for the autistic community, at least here where I live. But instead of waiting to be invited to someone else’s table, I want us to go ahead and solve our own problems and make our lives the way we want it for ourselves.

In particular, this means going beyond advocacy and volunteering, and into the realm of the economy. When we help each other through trade and services where we have a stake in the organizations, we are empowering ourselves in ways that no one else can do for us. In principle, money we exchange with each other helps create an autistic village economy. Non-autistics may question this model, because they may wonder how someone with a “deficit” can help someone else with the same problem. But we are all different and we don’t have the same exact problems, and also things that are problems about us for typical people are often not problems for us directly.

Of course I can’t personally do everything on this list, but I want to do some of them to some degree, and help make these things happen.

Autism-related services

One area where autistic people could help each other out is in social services and programs, of the kind that are already available to some extent for our population.

  • After school programs – A great program where I volunteer now serves kids age 9 and up, and is based on art and performance art. It has been funded by foundations and the state, and is free for families. The positive atmosphere seems to stem from the experience of the director, and her ability to pick staff with the right fit. If a model like this was run by autistic staff, it could more easily allow for a variety of autistic ways of being, and would not need to be so staff heavy (1:1 for the younger kids). I’ve been allowed to volunteer there, but always as if I’m on a probationary period and without any ongoing responsibility.
  • Summer camp – My area has one autism-specific summer camp. It’s an expensive thing with fancy accommodations and about a 1:1 staff ratio. It’s run by curebies as far as I can tell, for the purpose of simulating a typical camp experience for kids who otherwise would not be able to have that. I was not allowed to volunteer there so I can’t say a lot about it. If that high level of funding could be used by autistics to run a camp for ourselves, it would help out both the counselors with a summer job as well as the campers, and we would probably not spend as much on things that we don’t need. It could be a very growthful experience if it provided autistic space.
  • Therapy – This would involve autistic people who are credentialed, helping other autistic people professionally. At this point in life I probably won’t go get the required degrees, but plenty of other autistic people are interested in this.
  • Respite service – This would be a service where autistic kids and their parents could get some time apart. Babysitting basically. In some cases, parents have to send their kids to a jail-like behavioral health institution just to get some time off, when the child is not really in need of that kind of reprogramming. So the need for a supervised place for kids to be is very urgent. I would like to do this.
  • Transitional services – Young adults (mainly) often need help transitioning out of a parent’s house, or need support in their home, or help finding a place to live, or related services. This can include teaching of specific skills (like handling money and doing laundry) or just helping with things as an assistant. Autistics might be able to help each other out in this way in a more effective way than others can. I have done some of this work to help people I know, and I’d like to do more.
  • Housing – While group homes may not be optimal in general, a shared housing arrangement that is under the control of the tenants may be a great way to cut costs and allow people to live with people who understand them better. A landlord could rent rooms in a 4-bedroom house separately, for example, so no one would have to be responsible for the entire rent.

One typical motivation for service providers is to tap into the money stream that the disabled population unlocks (in most cases as a way to make an honest living, and sometimes as a way to get rich off the system). We would need to tap into that too if someone is entitled to it and we are providing the services that they need. It won’t work on a significant scale if we are just a parallel voluntary system; we have to be part of the general system.

School

A second area where we can help each other is in primary and secondary education. The public schools may be too far in the weeds of No Child Left Behind to contemplate a true autistic-friendly curriculum, but a private school may be just the thing for some families. A group of teachers could start a school that brings out the best, rather than just punishes us for being who we are. I would want to be involved in this, and I have the degree and teaching experience.

I tried to help within the schools, and would go to classrooms and help with IEPs and other school issues. Strangely, one school that did allow me to help in a classroom would not allow me to spend any time with the one child that they were having the most trouble with. I’m not as excited about volunteering in classrooms any more because the power dynamics will generally keep me as a useless extra.

Other businesses

In my software business I’ve been able to get some work for another autistic programmer and an artist, and the plan is to get a marketer to bring in more work. I unfortunately have a habit of hiring marketers who won’t do any work, thus they keep getting fired, so this is taking a long time to bring to fruition. But with the right marketer, we can bring in enough work for several full time jobs, and do very efficient and high quality work. Working with the other autistic people is a breeze; they always do exactly what they say, they care about quality, and they never have a snit about anything.

One of the things I would like to do with this businesses is expand into contract work that involves simpler, non-professional work – such as data entry and other business services, especially if they are part of a bigger contract that includes programming and web sites. That would allow us to give work to more people with less training.

I am also getting into running a summer retreat center on some mountain land (check back for a post on that soon). This is a long term project that will need to involve lots of people to be successful.

Advocacy

So far it has been hard for me to understand what other people mean when they say “advocacy” or “self-advocacy” but I think it means getting something (a school or some larger system) to improve a practice, either across the board or at least for one particular person’s benefit. Everything I’ve tried in the NT world in this domain has been dismal. In the autism world I haven’t figured out what to say to whom to create that feeling of engagement in a common purpose, but I continue to think and read and write and maybe I can do this at some point.

Some particular areas of advocacy:

  • In the process of doing support groups, people show up with a predicament, and we could be more organized to offer help. In some cases where I’ve tried, I found I was the enemy of someone else who competing against me to help (i.e. control) towards a different outcome, or the things I was saying were not felt to be relevant.
  • Education reform – I’d like to hold forums on education of autistic students, since so many people work in that field with so little training, and the need to define what “appropriate” means in a “free and appropriate education” is so urgent.
  • In the retreat center, youth programs, or other endeavors, we are always going to be experimenting with new models, and even though science isn’t the main purpose, they provide an environment for experimentation, and then analyzing and publishing results.
  • Think tank on other issues. My prior main interest was transport planning, and there are a small number of independent think tanks (usually centered on one person) in that business that create nearly all the new ideas that everyone else either repeats as gospel, or fights against. My contribution is here but it wasn’t widely read. In just about any field, the people who actually thinking independently are very few. I believe we can study issues in any domain that people have an interest in, and with some larger numbers put some weight behind our published recommendations.

Synergy

There are ways that all of the above can be self-reinforcing, or done at the same time by the same people, or meet multiple needs at the same time.

  • Any service done by autistic people for autistic people benefits both sides of that equation, which is important because unemployment in that population is so high.
  • The more we have a central role in program design, grants and other allocation of money, the more effectively we will spend it, because we seem to have a better sense for what is necessary and what is wasteful.
  • The more things that are done within the autistic community, the more people will have the experience of being less disabled (because we aren’t as disabled around people who think in similar ways), and therefore they will learn better how they can meet their own needs, and the less services they will need.
  • Services provided by autistics for autistics would likely be less prone to power-plays, in the sense that the assistant would not have the side-motive of gaining power. Therefore the actual thing that needs doing (laundry, transportation, whatever) would just get done, and the recipient/client would be able to decide whether they want to be taught how to do things versus just get the things done. Both kinds of assistance might be needed at different times.
  • In a residential community (an “autie house”) the residents could provide temporary housing, and provide other assistive, respite, or transitional services. This is just one example of multiple kinds of service being done by the same people.
  • The staffing ratios common to youth programs is very staff heavy, but this appears to be more due to the communication barrier between autistic and typical people, not any intrinsic need for more supervision. Therefore there is a big savings potential in autistic-run programs where the communication barriers could be less.
  • Likewise, autistic adults appear to “need” a lot of staff, sometimes just because it takes a lot of people to figure out what a person needs. I had a chance to observe one team of about 8 professionals “helping” a young adult, and my impression was there were too many people operating in a too-shallow way. It took so much energy to navigate among the people in the system, so it became systematically impossible to do anything creative. An autistic person on that team could potentially cut through a lot of confusion.
  • Because autistic people don’t appreciate social logic as much as others, we are less likely to fall into traps like applying data averages to specific cases, and thus would understand and accept differences more readily.

Please don’t misinterpret any of this to mean that we should permanently isolate ourselves. I’m thinking that it’s good to spend part of our time interacting (socially, professionally) with each other, and part of our time with the rest of the world. Everyone has value, but people who have similar minds have a special value for each other.

How?

I used to believe I could do anything, until I failed so often, and now I really don’t know what I can and can’t do. People say anything is possible with inspiration and discipline, which I have plenty of. All those feel-good quotes don’t mention that you have to engage with people on their cultural terms, and that you have to fight, which may explain why I don’t register as relevant very often. (Am I too noncultural and nonviolent?)

Do I join existing “self-advocacy” groups? The local center for self-advocacy doesn’t have a “join” button that I can find. (I mean that metaphorically, not just a button on a web site.) The national ones appear to be full of effective people that I feel anonymous in comparison to.

I’m thinking that if I go more public with what I want to do, somehow I’ll figure out the elements that make it possible.

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2 responses to “Things to do when I grow up

  1. Anna Smukler says:

    Ian,
    my son Ish showed me your land post/blog and I feel compelled to reply. Our family has many on the autism spectrum, from severely disabled to highly functioning in the regular world (engineer, math prof). I’m thinking too of Dan Gotlieb, host of NPR’s radio program Family Matters, who speaks often about his autistic grandson and wrote a book for him, Letters to Sam. I think Dan would be very interested in your project and it could make a good program. Reading your material, everything in me said Yes!!! — to your concept, the need for it, and most of all the incredible possibilities. May the necessary forces in the universe coalesce for its fruition.
    Anna

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