The autblogs seem to oppose it, the reasons for which were not readily apparent to me, so I thought I would pull together some thoughts and opinions about the change. The first thing I noticed about the web-buzz is the rush to judgment about what will happen based on this or that study, such as the idea that they are trying to deny people services (or alternately, that they are trying to sell people more drugs).

In my analysis, as I will elaborate on below, my main conclusions are (1) It is important to get the definition right, but the new DSM-V scattered language is not a help. As currently proposed, it could cause a more random, less helpful rate of diagnosis. (2) The DSM should be less judgmental, and not define thresholds or attempt to allocate services. The allocation of services is a separate issue entirely, and should be based on the observed needs of people in their environment. And (3), the definition of autism should be based on a more structurally sound understanding, using the categories of focus, sensitivity, acculturation, and naivete. I’ve drafted completely new language for the diagnostic critiera.

1. What will the changed definition actually do?

Overall, the proposed definition is wordy and fuzzy. It is the kind of writing that you get when people don’t really know what they are trying to say. It hedges more than it defines.

First, the new criteria are more vague and subjective. For example, the old criterion – “a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)” – lists specific things that typify the behavior. The new criterion – “deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction” – is scattered and much harder to read. With the old wording, you could make a case that a particular person does that or not. But with the new wording, there is no center to it; it is so indefinite, that it has become meaningless. Almost anyone in the world fits somewhere in that vagueness.

Second, the new criteria are more judgmental. For example, the old – “stereotyped and repetitive use of language or idiosyncratic language” – is subjective, but not value-laden. The new wording – “deficits in nonverbal communicative behaviors … poorly integrated … or deficits in understanding..” – reads like a list of things we hate about you. Why would they go out of their way to change non-judgmental language into purposefully judgmental language? Much more than the old wording, the new version forces the diagnostician to make value judgments based on how things seem to them, such as whether behaviors are “excessive” or “appropriate”.

Because of these changes (from specific to vague, and from objective to judgmental), my prediction is that the new manual will result in a more random categorization of people. Some diagnosticians will include more people, and others will include fewer, based on their personal values. More people who are not truly autistic will be misclassified as such, and more who truly are will be excluded. It is just overall less meaningful.

2. Why define autism in the first place?

The DSM appears to fulfill two main purposes. As a glossary of terms, it allows people to talk about neurological and psychological conditions using shared vocabulary. Researchers can, for example, study a data set where subjects have been labeled with standard terms, and others can use those results meaningfully in other research.

The second purpose is as a taxonomy, it allows non-specialists to place someone in a large sea of fine distinctions, much like you might use a leaf identification book to find out the species of an unfamiliar tree. Someone needing help can use this taxonomic placement to connect with specialists and teachers who can help.

I feel it is important to define autism and other conditions accurately because understanding who we are is vital to our development. Being mislabeled and then being blindly mistreated for the wrong diagnosis (or being unlabeled and being punished for being who we are) is a bad outcome. Having a good definition is a first step in avoiding that trap, and is a step towards finding others like us, finding others who understand us, and finding self awareness.

Some of the web buzz appears to assume that the DSM has further purposes, which I don’t think it has. First, it does not provide diagnostic tests, so it cannot be used by itself to establish a diagnosis. Second, it does not define the need for services or allocate services.

3. Why make a change in the definition of autism?

The DSM authors’ reasons for changing the definition appear to boil down to (1) simplifying, and (2) recalibrating. This understanding is only from reading secondhand sources.

Simplifying: They did simplify in terms of coalescing several related categories into the umbrella of autism, but they created more complexity at the same time by making it scattered and vague. Simplification makes sense, as the old categories did not appear to be based on valid science. But I don’t think they have achieved it.

Recalibrating: This is the more controversial reason. It is as if the DSM-IV accidentally made it too easy to get a diagnosis, so the DSM-V is supposed to fix that mistake by un-diagnosing people who were never really broken in the first place. This is where the mental fog thickens into mental mashed potatoes. It was never the job of the book to widen or narrow definitions in order to capture more or less of the population. That’s like saying we are going to reclassify 25% of birds into “neo-reptilions” because the budget for studying birds went down and so we need the bird category to be smaller. If that happened, then you (the bird watcher) would be obligated to declare that a particular thing perched on your bird feeder is not a bird, because it does not fit the newly restricted criteria for being a bird.

I don’t think they achieved either of what appear to be their reasons, and I also don’t think recalibrating even makes sense as a reason. There are good reasons to make a change as I’ll get into below.

But first, here is another reason sometimes cited for never making a change: “If we change definitions, then you cannot compare data sets over time, and we won’t know if autism is really a growing phenomenon or just an artifact of the measurement.” This is true, but not important. When you study anything, you frequently have to take into account changing thresholds and valuations. For example, economists express things in “constant dollars” because prices cannot be compared directly over time. The EPA adjusted auto fuel efficiency ratings at one point, so the ratings before and after that change are not comparable. That is what you deal with when you analyze things. Moreover, culture itself changes, and the incidence of expressed autism is a function of that changing culture, because people who might appear outside the norm in one environment could appear within the norm in a different environment or at a different time.

4. What are the problems with the DSM approach?

The DSM approach to defining autism has several fundamental flaws.

First, the DSM is a taxonomy of brokenness. It only includes disorders, but the idea of a threshold of disorder is nonscientific and doesn’t follow from the taxonomy itself. It should be a taxonomy of all mental states, and should not judge them as good or bad. The NIMH says that about half of the population has a mental disorder in their life (higher if you include addictions). A professor told me that in one experiment, a random pool of adults was sent for screening, and two thirds of them got some disorder label. That should not be shocking: it just means that psychologists are getting better at describing more mental states. There is no scientific basis to exclude a certain chunk of the population on moral grounds that they are deemed “healthy”.

Second, the DSM creates artificial lines between health and disorder. If you don’t artificially exclude a chunk of the population from the taxonomy and you realize that most conditions are part of a larger continuum, then there is no need for threshold lines at all. However, some conditions are the result of a single gene, and those conditions are not a continuum at the causal level. The point is to describe nature the way it is, based on observable measures, not just project manufactured categories onto nature.

Third, the DSM relies on surface behavioral markers for autism, as if to deny that there are any roots. It doesn’t distinguish neurological from psychiatric from behavioral. The reality is that there are physical brain differences, and real cognitive and perceptual differences, which are expressed as common patterns of behavior. But the part you can see is not the thing. You can use the behavior as a screening, or as the first level of understanding, but it should not be written as if the behavior is itself autism.

Fourth, the DSM confuses social with cultural. When we say humans are social animals, we mean we rely on each other, learn from each other, love each other, and live in tribes. When we say humans are cultural animals, we mean that we communicate in symbols and have a shared vocabulary of words and other cultural symbols (architecture, music and so on). The notable thing about autism is the difference in acculturation, not in socialization.

Finally, and this isn’t pointed at the DSM in particular: autism is not a health issue. Autism doesn’t make people sick or give then less chance of happiness than anyone else.

5. On taxonomy

The question that drives how you design a filing system is: “what information will I have when I need to get something out of the filing system.” A diagnostic manual is a taxonomy (or nosology) of mental or physical states – a filing system where the known variable is an expressed behavior and the desired knowledge is the underlying condition. To even understand a diagnostic manual, you cannot be a pure behaviorist; you have to at least accept the notion of underlying conditions. (The swing to behaviorism may explain the cloudiness of the new wording: the authors may no longer accept the basic purpose of the manual.)

The manual categorizes, but people aren’t really in categories – the taxonomy is just a tool, and we should not confuse the tool with reality. People are not strictly categorizable because we change, and because we are in relationships and environments that largely affect how our mental state is expressed and how functional it is. It is still useful as long as we remember the reason for having the tool (connecting people with solutions, and having common vocabulary), and we don’t worship it (we understand that people are not really in categories), and we understand that expressed behavior is not the same thing as a mental state.

The ideal manual would allow a diagnostician to look up notable behaviors in an index and find matching conditions, then read the conditions to determine if they fit. A condition fits if it puts those behaviors in a structural context that explains the underlying condition, and this sheds light on the whole. The ideal manual has differentiators (factors that distinguish conditions) that are close to the root of the condition, and therefore unlikely to relate to many different conditions.

The ideal manual is not concerned with the extent of behaviors, unless the extent is a true differentiator. The amount of behavior is not the amount of a condition, and the amount of a condition is not the amount of need.

6. My proposed definition

I propose the following for the DSM-V.

Short description: Autism is a condition whose name implies being “of the self,” or independent. Sensory experiences are less filtered, and are relatively uninformed by the culture of which the person is a part, often leading to isolation. In everyday language, the person is said to be “in their own world”, not readily adapting to the fabric of the family and larger society.

A. At least one aspect of all four of the following principal factors, unless masked by compensations:

(1) Focus – a single sensory focus at a time (for example, not processing visual and auditory information at the same time); having long-lasting highly specific focus of interest (such as wheels or other parts of objects, a certain toy, naming the presidents, or an academic subject); a tendency to focus attention in an undivided way, rather than the divide attention among many competing stimuli

(2) Sensitivity – abnormal sensory sensitivity to high stimuli (such as bright or flashing lights, or sudden noises) causing a strong reaction; abnormal sensitivity to very low stimuli (such as hearing things that others do not hear); abnormally low sensitivity to some stimuli (such as not noticing cold or pain)

(3) Non-acculturation – lack of adoption of language (such as not speaking, or delayed start of speech); lack of acquisition of language in context (such as the meaning of gestures, sarcasm, or non-literal statements; or lack of use of gesture or eye contact); lack of interest in or conformity to culturally significant topics (such as manners, popular songs, or sports) unless one of those things happens to be a focus of interest; not imitating the behavior of others

(4) Naivete – lack of development of strategic social game playing in teen years (such as taking sides, manipulation, awareness of social conflict); maintaining a naive, guileless, or childlike manner into maturity

B. Any if the following associated factors which may be used to identify the condition, but are not always present:

(1) Behavior – self-stimulating behaviors which are either communicative (such as flapping hands when happy) or as a reaction (such as rocking or other repetitive movements which are more pronounced under high stress)

(2) Inconsistency – a high variation of intellectual capacity (unusually strong in one area and unusually weak in another); inconsistency of language use over time (such as becoming non-verbal or “shutting down” periodically)

(3) Compensations – a repertoire of appearances and behaviors which mask any factor listed in part A

(4) Isolation – low ability to develop peer relationships, or lack of interest

(5) Routine – adherence to specific routines or rituals, often as a technique to retain autonomous control of the environment

In the case of B(3), compensations may render the condition difficult to detect. In this case, more intense examination of focus, acculturation, sensitivity, and naivete are required.

7. How do we allocate services?

If the DSM would include a non-judgmental and more explanatory definition as proposed above, and would not attempt to exclude so-called normal people from its taxonomy, then we will have come a lot closer to accepting all people as we are, while also having a way for people to systematically identify treatments and other opportunities for growth. However, we have not touched on the issue of allocating scarce resources, which is a separate issue.

Allocation is the question of who gets services such as special education services and disability income support. It is important to get this right, because getting enough of the right kind of support early can put someone on a path that is more successful and ultimately costs less or costs nothing in the long term. Also, there are at least a few people who will try to get as much as possible at public expense, regardless of their level of need, so there must be reasonable limits.

A person’s level of need is almost completely unrelated to the kind or “amount” of autism that they may have. Therefore it is nonsensical to use diagnostic criteria as a basis for allocation. Instead, agencies that fund disability-related services should have their own metric that they use to gauge the level of need based on observation of the person functioning in their environment. These metrics should allow for change over time, and should not have artificial limits that are tied to disability categories. For example, one autistic person adult who is blind and has not completed high school may need income support and job training, and 24 hour supervision, while another autistic person may need only help with transportation. The first person costs a lot more, but she is not necessarily more “severe” according to the diagnostic criteria. The second person may require less money, but could have more pronounced autism characteristics.

This article is another systematic way to assess level of need

Quick specs on the land: 100 acres, 9,200 feet above sea level, 13-18 inches of rain

The big idea

My vision is for an autistic-run retreat center. The place will be built for spiritual renewal and communal living, a place to be yourself and connect to others and to nature in a simple direct way. There will be simple buildings with kitchens, a place for tents and bunk beds, and a place for meetings and meals. Churches and non-profits will be able to use the space. Participants will be able to walk down to the cliffs or to other places to be alone in the woods.

Some of the features of the management and architecture that I’m currently envisioning are:

1. It is compact and accessible. Each building will be wheelchair accessible, and the whole place will be clustered for easy access. It will not be sprawling like a typical campground. Cars will be kept away from the area with the buildings, and there will be no RVs. This will allow it to be scaled down for walking, not for cars.

2. It is built for communal experiences, not for escaping. There will be only a few private rooms and everything else will be done together. People can contribute to the whole group regardless of their age or position in a family. You can choose solitude by going away from the center, or choose to engage by going into the center. It is not for the kind of vacation that involves getting away from people or consuming entertainment. It is much more geared to working with and being with other people.

3. It will have a light environmental footprint, mainly by being communal and tightly clustered. Plans include solar electricity and water heating, solar cooking, simple construction, composting toilets, and rainwater harvesting. We’ll try to bring in as little as possible – mainly food, and keep trash to a minimum.

4. It is about options over conformity. Groups are different; people are different. Some groups will rotate chores like cooking and clean up, and others will hire helpers for that. Groups can have whatever kind of meals they want. Using tents gives privacy, or being in a bunk room gives community. A communal experience succeeds when it is possible to meet a variety of different needs.

5. It is about convenience and efficiency, not about “roughing it”. The work involved in providing for all the daily needs of a big group of people should be minimized. There is no virtue in being uncomfortable. Therefore we don’t anticipate hauling water, cooking on camp stoves, walking long distances to a shower, or any of the other inconveniences that are often experienced when camping out. Hundreds of design details need to be worked out so people can, for example, wash laundry, charge cell phones, keep personal items handy, and get through the day with a minimum of hassle.

The money

The land is only perhaps 20% of the total costs, and we don’t have money for the rest of it. So this has to become a bigger process in order to work. It should ultimately be profitable or at least pay for staff. People normally pay $50-100 per night to go to retreat centers, and my idea is that this one could charge substantially less and still cover costs, by being very efficient.

My history

I have an engineering mindset about things, so when I’ve attended other retreats, particularly those held on college campuses, I’ve said to myself, “there has got to be a better way.” From there, I kept on pondering the architecture ideas. I’ve been amazed at how expensive these experiences can be, and the result can be cumbersome and regimented. There are long distances in the heat of the summer, no place to cook anything, and too few ways to get any specialized need taken care of. This center will address those kinds of needs.

A second relevant part of my background is in gardening and permaculture. This interest is also about efficiency but more from an environmental land management perspective.

A third thread from my background is quakerism, with its communal decision making, honest relationships, simplicity, and related factors that lead me to believe that the way environments are set up can foster genuine growth.

Growth

The process of building this is an opportunity for growth for everyone involved – staff and visitors. I don’t want to lose sight of that in the effort to get things done. However, there is a balance between a focus on the self and a focus on the whole. Yes, it should be therapeutic, in the general sense of helping people align with their growth path, work through challenges, and have life-changing experiences. It should not focus so much on the individual though, the way therapy is too often limited to the shallow goal of just changing a single person’s behavior. Factors that can make the work environment therapeutic include a general atmosphere of respect, participation in decision making, and a focus on finding ones role as a contributor to a large project. I don’t want to make this about “helping people with autism”, which paints autism as a problem.

Underlying all this is a general truth that we all go through life carrying burdens, and this fact of life is not a bad thing. Burdens are ways that we prevent ourselves from being free – past traumas, blind spots, anxieties, beliefs and judgments. These burdens may look like weaknesses from the outside, and in our fix-it society we may have subject ourselves to programs aimed to exterminate parts of ourselves that others don’t like. Particularly if we are autistic we may have gotten the message “There is something wrong with you.” So it feels very important to me to treat those burdens as very private things that we are given to carry for a larger purpose. It is like an assignment from the soul – “Here, carry this.” If we treat them as gifts, and if we carry them tenderly and with dignity, we can, from the inside, turn those weights into strengths. Our paths of development are unique. Especially as autists (people of the self) we are each on our own journey, which is often not clear to anyone else. There is no specific person who is a “therapist” in this larger sense of development.

For me this project is part of finding my own voice. It is a chance to put together things from many threads of my past interests – building, sustainability, intentional community, and decision making. I haven’t taken my own perspective in life enough.

Why autistic run?

Being autistic is partly about being disadvantaged or disabled by a lack of acceptance. I want to use the land to challenge the powerless position of our people. People have told me that this idea is too difficult (just imagine the cost of insurance, road maintenance, and other complexities!) and that I should instead help people by giving away money in the form of scholarships to go to retreats elsewhere. Perhaps some feel that autistic people are incapable of doing anything complex, or that we shouldn’t own anything – that we shouldn’t have power. My intuition tells me that this idea might be hard for some people to hear, and might even be threatening to some people.

Autistic people can have a tendency to become disabled by typical institutions, as we are automatically the losers in the game of social status. Having a business or large project like this be run by autistic people is a key to making it an experience of not being disabled, because that status game won’t be played out in the typical way. Coming to work on the land, you will be coming into autistic space, where the social rules are shaped to fit our way of being. One of our strengths is that we have a tendency to work towards a whole vision without as much ego involvement and without competition or politics. An autistic run project in autistic space can focus on the contributions, the work and the results, and not the congratulations and the winners. If we decide for ourselves how we want to live, how to run our own businesses, how to be friends with each other, and how to contribute to the world, then we are no longer just the customers of the services that the autism industry doles out.

Non-autistics can be there of course, but I don’t feel they should be there in positions of power or in great enough numbers to take over. That would take away the advantages of effectively working together and experiencing the freedom and bonding that is possible in autistic space. We can help each other remember to think and communicate in our own voices, and to maintain our own perspectives. On the other hand, in a mixed team, the terms of the conversation are more likely to change into ways that don’t fit with how we think, and we might be more likely to back down.

Organizational challenges

Autistic people may have less experience in running big projects than others, and we may have a hard time getting organized, but these could be reflections of some collective burdens that we have to carry together as we work them out. There has never been an autistic economy, and there is only the beginning of an autistic culture. We are new at this.

We may find that to achieve the same outcomes that neurotypical people would achieve, we will need to find new ways that fit us better. This could involve the way contracts are made, the way expectations for work results are presented and negotiated, and many other things. It is not necessarily a given that we should conform to the general ways of the Americans. There are other groups that live within the country but have very different ways – the Amish being an obvious example. Although we aren’t a religion and we don’t usually (or ever?) have an extended living/working community, we do have a different way of perceiving the world, and a different way of thinking, which could give rise to many differences in culture if given the chance.

It might turn out that when it is time for the visitors to come and interact with us, there may be sparks, and again this is just part of what we have to work out.

I feel it is pretty important to make positions to fit people, rather than to make people fit into positions. Each person has different gifts and needs, and there won’t be any guaranteed fairness that what one person gives is equal to what someone else gives.

The factors of profit and ownership are an open question for me. If we do things so-called normally, we will have people who own and other people who work for the owners, which doesn’t feel entirely good. Alternately a non-profit sets up a different power arrangement, which can have other problems. Autists seem to be universally adamant about our integrity with respect to power-imbalanced relationships – we need to retain our autonomy as independent spirits, and typical employment relationships can be a threat to us.

Because of the simultaneous need for up-front clarity of expectations and the need for gaining experience in the face of the unknown, we may have to give special recognition the variable of time in work relationships. Time can be very different in relationships for autists as compared to others. For example, we might not be able to answer questions on the spot, particularly about commitments. In the realm of employment, there may be a way to build the time variable into the expectations, so that the need for a change in a person’s contribution or compensation can be handled in an orderly and unambiguous way.

Why reinvent the wheel?

There are a thousand or more retreat centers in the US designed for small conferences or spiritual renewal. I made a mental detour to consider using one of them for what I was envisioning, but came to the conclusion that what is important here is the process from the ground up. I’m thinking of one person from Israel who thought it might be possible to come to New Mexico to participate in this. His particular spirit strikes me as tuned with nature in a way that would allow him to know, over the course of some time contemplating it, who the animals are who live there, and how they move, and other aspects of the environment. Supposing my intuition is right about that, what is the value of this skill or activity? In our economic system it has basically no value. But still I find myself motivated to serve rice to the people meditating over animal tracks (that was just my fleeting vision of it); or more generally speaking, I want to make it possible for autists to serve according to their specialized talents. It feels powerful to convene a place in the woods for these sensitive independents to found a new enterprise, not just to fulfill a job position in some existing enterprise.

If it starts with the heart, perhaps it will be a magic place where people working there or visiting there will love it in a way that encourages them to move forward in their paths. I also hope it will be a place where people will fall in love with each other.

There can also be an intergenerational aspect to it – a multi-age summer camp to provide autistic space to younger people. This would be very new territory.

Global contributions

This project might show something important to the wider world: that the supposed 3.5 million dollars that “it costs” to raise and support the average autistic person for her life is not a necessary expense. Generally speaking, we want to contribute, not be a cost to society. By creating autistic spaces and supporting each other, we may be able to provide powerful counterexamples to the prevailing myths around our limitations and the need for constant, expensive, and damaging behavior control.

Beyond just doing this one little enterprise on a tiny piece of the earth, what is our global contribution? We’re not even asking the right question when we assume that we are a cost to society. Consider how the political system is incapable of solving big problems, and how a quagmire of cultural assumptions about race, gender, power, and privilege perpetuates the cycle of wars, environmental catastrophes, and poverty. Most people can’t change those big assumptions because most people are wired to replicate the thoughts of the people around them. But some of us have to think independently; we can’t think any other way. That’s our burden, which is called a disability. I feel we were given that burden to address the bigger problems, which others cannot. We haven’t started doing our job in any internationally visible way because we are still isolated and many of us are dispirited and believe we are broken. Projects like this one could help awaken us as a community of givers.

When it was over she said one thing: “That video is like the allegory of the cave.” If you don’t know about that, it is an explanation of ignorance by Socrates.

I asked why is it like the cave? She said the adults were only seeing the shadows, and were not seeing the real child.

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.

The winds of vanity have carried the autism world (the industry, that is) to such remote realms that I can’t find common vocabulary to even discuss it. When I’m in a classroom, and asked what we should do with an autistic child who is having a tantrum, I’m at a loss for words; I’ve lost my ground. Somewhere inside, I know that I know a good answer, but it is blocked. I suggest consoling him or giving him time alone (or whatever trite thing that comes to mind), but what I really mean is the situation is absurd: why is controlling this child so urgent in the first place? I find myself so unglued from home, and so lonely when I’m surrounded by people churning up this hurricane of “help”. I’m pretty sure that it is the energy of vanity that drives the idea that We Must Do Something. Yet I’m caught like Dorothy and as I said in a poem once, my guideposts have all blown over in a storm. When I have no ally in the sea of vanity, I make no sense; I am ineffective, disabled.

I always liked theater – the unbounded space for creativity, the games, and the way it creates equality. So I’m naturally attracted to the idea of autism theater, which is a Big New Thing (try a web search if you like). However, I was immediately lost in it, just like in the classrooms – both in reading about it and in participating in a some programs. I couldn’t identify the inspiration, direction or reason for it, other than as a form of Behavior Therapy, may god save us from that. Then I read from Augusto Boal (author of Theater of the Oppressed), how theater is the grounding for turning awareness of ones own oppression into action. In his work, theater is the initiating action that leads to action outside the theater.

The games that Boal explains (he has hundreds of them) have seeped into many other people’s repertoire of games, but they can be twisted to suit any other agenda. In the extreme, a game whose original reason for being was to connect people together to empower them to take autonomous control of their lives could be twisted into a game of controlling the behavior of a disabled class! The irony of that had been festering without my conscious awareness. Now I at least have Boal as an inspirational ally, to help me find vocabulary when I’m swept into those distant realms.

Interestingly, the person who lent me the book volunteered that he could find no connection between the concepts of Theater of the Oppressed and working with autistic actors! Privilege dulls our minds.

Looking across the chasm, wondering how will I ever become independent.

So, I made some pictures to represent three possible paths. The first path is to go down and climb up the other side by working jobs starting with babysitting, mowing lawns, McDonalds, and so on. You might live in a crummy apartment shared with other people and make minimum wage, but you eventually climb the ladder and build skills and a resume, and move up. That concept is shown here:

Path #1: Starting with babysitting and gradually working up to more.

The climbing strategy works for a lot of people, but perhaps not many autistic people, because we often can’t do those kind of jobs very well, even if we can do more advanced jobs well. For example, someone might be able to do economic modeling, but could not wait tables. For that sort of person, the climbing strategy is not as realistic.

The second path is to have the parents or government extend a board out so you can go more straight across. In that strategy, you either get protected work (such as being supported by a disability agency) or work in a relative’s business or some setting where the employer gives you preferential treatment, training, and more second chances. With that support, you grow into it. So you are transitioned and supported the whole time. That is shown in the image below. The break in the bridge shows that half is supported by the parents gradually letting go, and the other half is supported by the employer, gradually giving more support.

Path #2: Bridging across with support from both sides.

The bridging strategy works for a lot of people who have a common plan with their parents, but for those whose parents disagree about basic matters involving independence, they will keep throwing conditions into the process and you won’t be able to cross. That is, you might not be able to get any real authority to make decisions, because the parents are keeping all the authority for themselves as a condition of their support.

The third path is to build a metaphorical tower on the parents side, so that you can jump across from a higher position. An example of this strategy is going to graduate school and/or pursuing a special interest until you become an expert and can land a specialized job as the first employment. The tower model is shown here:

Path #3: Starting from a higher position and making the jump with credentials.

The tower strategy allows you to skip over all the low-level work like mowing lawns and watressing but still be able to make a clean break from the parents, so that there are no fuzzy lines of authority over your life. This last strategy appears to be more rarely used by people in general, but seems highly applicable to autistic people. Even if you aren’t very acedemically inclined, you could develop a base of specialized knowledge and skills that would be very valuable in a specific setting.

If these three outliers were taken to a psychologist, my guess is that they would get these labels: girl, 12: autism spectrum (question mark in the map); boy, 11: ADHD (fuzzy in the map); and girl, 14: emotionally disturbed (maybe; sad face in the map). The boy would often be jumping up and down and being loud when others were quiet. The younger girl seemed perpetually unsure and didn’t speak much. The older girl would isolate herself and had a surprising lack of knowledge of everyday things. All this is just the negative labeling, in the sense that it could suggest they shouldn’t be like they are. That’s not my point – I liked them just as they are and didn’t want to change them or help them be any different.

My point is to use this group of kids to illustrate “needs”. The three outliers might be classified as having “special needs”. I am going to turn the idea of special needs upside down by looking at the behavior of the majority and first ask what their needs are.

The pack of seven was spending a lot of time laughing and teasing each other, usually supportively and sometimes with some one-upmanship, and often jockeying for the center of attention. In short, it was what most people call normal and healthy teen social development. They do this because of a deep desire to find their identity and create relationships, and it appears to come naturally. It is a legitimate need, so we can say truthfully that teens “need” to be with other teens.

Kinds of needs

But this need to be with other teens is not a fundamental or universal need, in the same way that air, water and shelter are needs. Therefore we must distinguish universal needs from common needs. Universal needs are those things that virtually all people need: water, food, shelter, and rest. A longer list of nearly universal needs includes love, peace, contribution, expression, safety, trust, empathy, hope, and autonomy. Although a devil’s advocate might argue that it is technically possible to live without these, any person living without these is living without his or her needs being met. In that sense, these are all universals.

While the pack was doing its bantering, the three others were often waiting, not really doing anything. I believe that the minority of three simply didn’t experience the need the same way. In this small sample, the need to be in a social pack with other youth was experienced by only 70% of the population, not 100%. Some might say the three outliers still needed it but were unable to meet their needs (due to lack of skills) but I don’t think so because these particular youth were effective at doing other things that they had motivation for, but they were clearly not motivated for the alleged need in question.

The situation calls for distinguishing three categories of needs, which I’m calling universal, common and special needs. Common needs are experienced by a majority, while special needs are experienced by a minority. Both common and special needs are molded by the culture, and dependent on the environment, and are not universals. They are sometimes values expressed as needs, such as “In today’s world, people need to be able to use the internet.” They are sometimes a statement of the burden that a person places on the rest of society. The same person can have different needs in different situations, like needing supervision in a city but not needing supervision in the country.

Here are some examples of each:

It may be easier to see how common needs are not needed by certain people when you consider physical disabilities. A totally blind person, for example, doesn’t need paint or architectural accents. If everyone was blind, the total cost of the built environment would be less, not more, because buildings could be simplified on account of the fact that blind people have fewer needs. Blind people are not disabled by blindness itself, but rather by the fact that the world is built for sighted people. The great deal of attention and expense that we incur on behalf of sighted people is the thing that disables the blind. The same idea applies to autistic people, many of whom don’t make much use of industries like entertainment, fashion, and sports. If everyone was autistic, whole industries would be unnecessary because we don’t have those needs as much as others. The point of this diversion is just that a lot of people don’t experience the needs of the majority.

Among the ten youth in the summer camp, I suspected that the three who stood out were not (as normally assumed) different on account of having special needs, but were in fact different on account of not having some of the common needs. That’s the opposite of the widespread assumptions. The common needs that the majority was experiencing were the merrymaking relationship-building time that I described above. I think that the three outliers were actually getting their needs met (because they usually appeared to be happy) but they were getting them met in less time than the others, and consequently they had to wait while the majority did what they needed to meet their other needs.

The lesson here is that those with special needs don’t necessarily require more work or more money (more teachers, more counselors, smaller classes) than anyone else; they might even have fewer needs than others overall, even if some of the needs they have are unusual.

Needs mismatch between teacher and youth

If we understand these culturally dependent needs as explained above, then a prominent question is: how can adults plan an educational or camp program for children whose needs are different than the adults’ needs? I’ve often been in that situation, when I’ve planned youth programs when I’m more like one of three outliers at the camp. I know they need the typical teen stuff (even if I don’t experience it the same way) and I budget that time into the plan, and then I just tend to wait it out. On the other hand, I’ve also projected some of my needs onto youth when they were not interested. For example, I’ve assumed that a child needs more direction than they really did need, or that they needed an intervention in a conflict, when in retrospect it was clear that no such thing was needed.

There is a parallel with doctors. For example, some people complain that gynecologists should be female because males couldn’t possibly understand female parts or conditions. But this position is unsupportable because most of what all doctors treat are conditions that they themselves have never had. (Should all liposuctionists be obese? Should all veterinarians who treat cracked hooves be horses themselves?) Obviously doctors are trained from the point of view that the patients are different from themselves; medicine is not an art of projecting needs onto the patient. And that is how it has to be with teachers; in general, it is not practical to find teachers whose ability/disability labels are the same as all of the youth whom they teach.

This brings me to special ed teachers and others who program for youth having “special needs”. Those teachers should not project common needs onto the youth who might not experience those needs. For example, teaching autistic preschoolers (who have low tendencies toward acculturation) about culturally based concepts like the days of the week and the months of the year could be a waste of time, since that kind of information exchange is not necessarily needed by those children. (The information itself will probably be acquired anyway, but not in the typical time line and in the adult-mediated format.) All the effort to make the shy person more social, the active person more calm, or the blind person more seeing is a fight against who they are, it is deficit oriented, and fails to account for what their actual needs are. We cannot assume that people who are neurologically or cognitively atypical have the same educational needs as everyone else.

By letting go of these assumed needs, there is a great deal of cost savings, the reason for which is along the lines of why buildings for the blind should be cheaper. You can let go of the deficit focus and let go of all the tools and staffing that is built around the deficit focus. And there is another reason: People don’t like it when their needs are not met, and under those conditions, children try to escape or destroy things, and the system develops a more extensive social control apparatus. When children’s actual needs are being met, their natural motivation makes them need less supervision and the whole thing costs less.

The black dots are people, who mainly cluster in the middle. The outliers spread at lower concentrations as they get further from the norm. I’m coming at this from an autism perspective, so I’m thinking of the fringes as autistic people, but the outliers could be anything atypical. Cultures tend to collect people towards the center, but they don’t draw everyone in equally.

In the next picture, there are three concentric circles. Each circle represents a different idea of what “normal” is. It is an arbitrarily divider that draws the line between normal and the rest of us. If you define normal to be circle #1, then you may have only included slightly more than half the people in your definition of normal, and excluded the rest. Circle #2 includes more people as normal and circle #3 includes the most.

Measures of autism rates differ so much partly because of where they decide to draw the circle for that particular study.

So far the pictures look at culture from the outside. But here’s a new idea – looking at it from an outlier perspective:

The pie slice in this view represents the field of vision of the outlier. He can’t see into the neighboring alcoves, so from that person’s perspective, the vast majority of people are highly clustered and the other outliers are mostly invisible. Therefore, the outlier perspective has the most in common with circle #1 in the previous picture (and less in common with circles 2 and 3). The actual ability of someone in that position to find similar minds could be highly restricted by the misleading viewpoint.

While a drawing doesn’t prove anything, perhaps it enlightens the way a culture can maintain dominance even when only half the population fits it or buys into it. The outliers feel as though they are in alcoves and their viewpoint is restricted to observing the culture’s center.

Another way to look at it is here:

This is an image of two social maps that I made to explain isolation of autistic youth, even within a program specifically designed for them.

The social map on the left represents the dominant culture in the main cloud and four autistic participants, who are each connected to a counselor, but not to each other. On the right, the connections remain, but the participants are also connected to each other and have developed a new separate culture, or sense of group identity.

I find that the left side is a closer representation of what is actually happening in schools and other programs for autistic people, because there are so many teachers or counselors, and they try to make the autistic people mainly talk to the typical people, instead of to each other.

The dominant culture is very “fix-it” oriented and many people may have the drive is to conquer and assimilate those who appear to be independent, different, or nonconforming, the way the Europeans have tried to assimilate native Americans into the dominant culture. In other words, don’t allow a separate group to develop outside the mainstream. One can argue that the natives are better off to assimilate into the conquerors, and in fact some of those that did are wealthier than those still living on the reservations. In the same way, a widely held view is to bring autistic people out of “their own world” and into the shared world of the dominant culture, and thus “fix” their autism.

Today, many people realize that it was wrong to try to destroy native cultures, despite the possible advantages to those who “converted”, because we now have a belief that people ought to be free to be who they really are. In the same way, autistic people have a way of being independent of social norms, and to allow that freedom is to allow them to be who they really are. The desire to make then conform in order to help them be successful always has to be balanced with the value of letting a person be who she really is.

The very strucutre of culture (whether viewed as a cathedral or a cloud) isolates people who are different than the norm. One of the most important ways to remain who we are is to change the map, so there are no isolating alcoves, and so there is space for more than one way to be.

PDF Version of IEP handout

Big ideas for people with IEPs

The law guarantees free, appropriate education to everyone, in the least restrictive environment. For 10% of students (that’s you), your parents and teachers have determined that mainstream classes are not appropriate or not flexible enough to meet your needs. IEPs are plans for how the school will follow the law so that you get an appropriate education. “General education” is the name for mainstream classes, and “special education” is the name for all the separate classes and additional services that are set up for students with IEPs.

The goals of your IEP should state

• The educational standard or level that you intend to reach. It may be the same as the standards for general education, or it may be more or less than that (or more in one area and less in others).
• How the school will give you the opportunity to reach that level.
• How you will adapt to what the school can provide. (The school cannot teach you exactly how you want it. It is always a compromise and you meet in the middle.)

It’s a free country. No one can require you to change your personality, beliefs or learning style, unless it is harmful to others.

People change. You may have had a certain unhelpful behavior pattern, but that’s not a good focus for the IEP because it is negative, probably temporary, and it may not be caused by what people think.

You (and family) are in control. You have to agree to the plan. You don’t have to accept special ed status at all. If having a label doesn’t help you, ignore it.

Debate topics

Inclusion versus separate classes – What’s appropriate? – Should you be able to learn whatever you want? – How much accommodation is reasonable?

Creative assignment

1. Design a perfect school for yourself, either in pictures, notes, or paragraphs. Or describe a perfect school day. Base it on your strengths and interests. You can include ideas like no tests, no bullies, be able to study kangaroos all day, whatever would make it an exciting place to study subjects you like, and would help you be successful – in whatever way you understand success.
2. Discuss with a teacher: In your perfect school, would you reach a higher or lower level in any subject area, compared to the real school? Is there something about your unique personality or disability that means you should reach a different level?
3. Discuss with a teacher: In you perfect school, what is different about the environment or the way things are done? Is there something about your unique personality or disability that requires things to be done differently?
4. “Accommodations” are what the school has to do differently for you based on your IEP. Look at the list of common accommodations. Which of these would you like to have, and which do you really need? What other ones do you need? Find a way to meet in the middle – something that you can adapt to, and a school can actually do.