Sunday, January 12, 2014

Transitions: a problem experienced by both autistic adults and autistic children

This blogger can happily say with openness, that transitions are really hard.

Each every spatial change of scenery, each change of expectations, each evolution in standards for performance, all of these things cause a lot of extra stress for Autistic people.

A good way to deal with transitions is to be willing to go really slowly during the beginning of one's adaptation.

Another good way to deal with transitions is to try to find activities to engage in that help to refamiliarize.

Some Autistic people are not satisfied by many transition rituals used in broader society, thus we sometimes carry more spread out anxiety.

Anxiety and adjustment to a new place or location or situation requires constant alteration of sensory expectations.

We have to get used to new levels of background loudness, to new formulae of action to help satisfy our various needs at various times.

These sensory and social readjustments seem to happen much slower for people on the spectrum.

I say this in order to describe the troubling difficulties of this author in transitioning out of undergraduate and into adulthood (with all the responsibilities that come with that).

Thus, it is rational for autistics who are transitioning to try to keep certain things fairly similar to how they were.

If the location has to change, then make some of the foods stay the same. If the clothing has to change, make other things seem familiar.

Some of the most intense Autistic anxiety arrives when many changes have to be adjusted to and there is no clear way for things to remain *thinkable*. And when I say thinkable, I mean the details of one's life being able to be predicted, expected, knowable.

Thursday, January 9, 2014

"If you can't get your financial aid set up, how are you smart enough for college?": an illustration of twice exceptionality.

This post is going to be detailing how my strengths and weaknesses interact to make a tragicomedy of errors in regards to going to university. These events are all true, all really happened, and all happened in the past few months-most in the past week.

It starts last school year, when I applied to a dual enrollment program with a university and a community college in my city. They advertise it as an easier and cheaper way to do school-you can do your lower division courses at the community college at community college prices and take your upper level courses at the university. Best of both worlds!

And your financial aid? Because if you are exploring this option, money is clearly an issue? It's so easy, it will be disbursed in a lump sum still, through the institution that you're at the most!

Hahahaha no that is not how it works.

Making financial aid actually work? Has been a baffling process that I have no faith actually worked. There are never ending streams of one more things and paperworks and new tidbits of  info that might make sense to someone but certainly aren't intuitive to me.

So this term, less than a week old, has had my aid bounce back and forth between institutions, varied from "not enough for even part time at the community college" to "totally set for the term" to in between (I do not know where it is at right now, my last phone call was 3 hours ago. Supposedly it is fixed).

You know that way people have of telling you that what they're telling you is simple, and if you don't understand you just cannot possibly expect to function in any domain? But without using those words? Did you know there are a lot of ways of indicating this? I do! It has been my last week.

Things that I was supposed to understand and didn't:

-You need to do a new co enrollment agreement every term, even if you are not switching your home institution.

-Your home institution just means the place where you get your financial aid. Or maybe it means something more significant. Maybe it just means the place where you take the most credits. Oh but what those credits are matters too. But you definitely have to be 3/4 time there or your aid will be effected. You might also be selling them your soul and leasing it back from them. No one could really tell me the significance.

-Regardless of how many hours you are taking, you are shit outta luck if you're trying to collect financial aid all through the community college and are taking 300 level or above courses at the university. Even if the ratio is 10:4. That is not my ratio, but if it was I'd be somewhat screwed. There is no reason for this except "we're a community college". Unless it has to do with that soul thing. Maybe they can't own the parts that have taken upper division courses?

-That last thing? For some reason this is so patently obvious to everyone else that it took 8 phone calls for it to occur to anyone.

-The online paperwork for the university only has "I am not doing co-enrollment this term" and "I am done registering at the community college" as options because if you are getting your aid through said college, you have to go get their form. Not the university's form.

So this whole process has been really daunting, to the point where I was trying to figure out how little nutrition I could get by on for a term to avoid picking up the phone and finding out yet another teensy weensy self evident little detail that actually totally changes everything.

And yes, more than one financial aid person has asked me if I am sure I am ready for university.

Well. Academics are not everything even a little, but they're what you're talking about when you are talking about university. I got a 3.7 GPA last term. My in major GPA is a 3.5 or so, in the other potential major (double majoring ftw) is a 4.0.

My brain may not understand the financial aid nonsense. But the things I do understand? Well, I've had profs just go with it when I assert that the minutia in one of my areas of abilities is what it is, because they aren't convinced that they understand but they trust that I do. There are all sorts of things I grok deeply even though they aren't on the syllabus of any course I have taken, because I get interested and then I go deep with my investigations. Or at least as deep as I can until I run into a paywall, a language wall, or having to do 700 pieces of paperwork and deal with a few dozen "one more thing" details.

This is how twice exceptionality manifests for me. I can do the work, understand the work, but the process to pay for the privilege of doing the work is as mystifying to me as the minutiae of, oh, how epilepsy drugs work is to everyone else.

I can't just apply the part of my brain that's really good at patterns or details to doing beaurocracy. That isn't possible. It's not just about being smart. It's about having the abilities called for by the task. Those are not abilities I have, even if I do have more than I need in other areas.  It's not like a computer, where you can allocate memory to different partitions. The processing power is all decided all ready. If I could move it around, I wouldn't be twice exceptional. I probably wouldn't even be particularly once exceptional.

"Are you prepared academically for the university?" is the wrong question here. "What supports do you need to make the process as painless as possible?" would be the right one. Both my gifts and my deficits are relevant to the issue.

That's how twice exceptionality works: gifts matter. Deficits matter. What the person wants matters. Not what the weakest deficits allow. No. What I can do with my strongest strengths, with support for even my most dire weakness, that matters.

...which is why I cried with relief when someone at one of the offices sat on the phone with me and went through every detail I needed, including waiting for me to do the things I could do on the computer right that second. Proper support happened. Now I can do things I am actually good at.

Monday, January 6, 2014

Don't "Aspie" Me

This post is cross-posted from my individual blog Shaping Clay. - MSMjr

It doesn't take long in this community (the autism one) to develop a sense of the divide between parents and adult activists. It also doesn't take long to develop a sense of the difference between adult activists who are
working for social justice change and those who are asserting their identity and looking for community with others like themselves. The two groups aren't mutually exclusive by nature, and as we as participants in the community seek to find our place, we start to see who is doing what in each of these communities. This is natural; this is fine.

I'm not here to complain about it.

It's also true, though, that there is a rift between the people who are attempting to increase access needs and to work on civil rights and a group of people who want to focus *exclusively* on identity. The latter group tends to be privileged in some way, either due to a combination of race and socioeconomic status or because they received attention and guidance that allowed them to assimilate into the larger culture. They often feel lost and alone, not understanding why most of the people they surround themselves fail to identify with them. They need community.

I'm not here to complain about that, either. Those of us that are diagnosed as adults often have long histories of isolation and depression that we have not shared with others. Even when our surface scripts have allowed us to attain a degree of professional success, we often find ourselves sacrificing family or personal relationships to do it. When we are finally diagnosed, late in life, we drink in the community that we find deeply and we seek nourishment in it. This is natural; this is fine.

Unfortunately, though, there is a tendency to divide "us" from "them" in our community. Many parents view "Aspies" as something apart from their children, not something that their children could one day grow into. They assume, because we are articulate and we have learned the rules, that we have "overcome" challenges. This is a ridiculous and dangerous assumption. No doubt there are some members of the community whose personal challenges are greater than others. No doubt there are members of our community who do not fully grasp the extent of the challenges faced by others because they themselves have not faced them or known members of the community who face them.

This is to be expected, to some extent, but the solution is not to divide our community into two camps. Nor is it to dismiss "Aspies" as having some other identity. To do this is to further disenfranchise a group who has already faced social disenfranchisement for their entire lives (even if they have not faced political disenfranchisement). It creates a kind of disability ghetto where any remaining challenges to their success are the individual personal failing of the "Aspie", who is assumed to be assimilated into the allistic hegemony and therefore "successful." Such a division is neither helpful nor useful. It is a way of directing resources toward one demographic at the cost of another, and it falsely assumes that the current presentation and status of the "Aspie"s symptoms, traits, or whatever you want to call them--let's just settle for characteristics--it's the assumption that the presentation of those characteristics in the adult before you is the static.

This is a dangerous and false assumption, too. One that does not take into account the complex and difficult journey that is life for all of us, autistic or allistic. It is an assumption that fails to acknowledge the basic fact that autism is a developmental disability--a difference in the rate and kind of growth a person experiences over their life. It's not a developmental halt.

It's dangerous because it denies adults access and it leads parents to deny that their children will one day be autonomous decision makers, guiding their adult lives with only the supports they choose and achieving goals that they set for themselves.

If you're reading this and you just said, "but my kid won't have those things, you just don't understand because you haven't seen him," then you're part of the problem. It is true that there are members of our community that will always need some form of assistance, that can not live alone. This does not mean that they can not live independently or that they will not be able to make their own choices.

I'm not saying that your child does not have challenges, though. And I'm also not saying that your child absolutely will achieve anything. Just that the assumption has to be there that, given the right supports and tools, it will be possible. It will definitely not be possible, though, if that child is immersed in an environment that assumes that successful autistics are not them. I'm saying that supporting autistic children requires showing them Autistic adults who are saying "We Are Like Your Child".

It requires more than that, though. It requires those of us that have achieved our goals to speak out about the challenges we have faced along the way, including those that we still face on a daily basis. It requires us to acknowledge the non-autism traumas we have experienced because of the differences in our emotional and cognitive developments, including the times we were excluded, abused, or marginalized by authority figures.

It also requires us to stop holding ourselves apart. Parents of children with extreme challenges and/or co-existing conditions are not the only ones creating this divide. The term "Aspie" has come to be a way for those of us who want to talk about our experiences to separate ourselves from "those" Autistics. It allows us an identity that has been sanitized for our allistic audience--a way of performing eccentricity instead of disability, of showing we are "like them" but "still employable".

This is disgusting.

I realize that not everyone who throws out the term "Aspie" means it in this supremecist way, and I realize that not everyone with an Asperger's diagnosis is comfortable with the Autistic identity. When I was first diagnosed, I had two opinions I was weighing--one that ignored my synesthesia as a "neurological quirk" and diagnosed me with Asperger's, and another that asserted that my synesthesia was an extreme sensory processing issue that "increased" my diagnosis. For some time, I looked at my ability to finish my schooling and my track record of providing my own basic means of survival and I said to myself that it would be appropriative or demeaning for me to seize upon "Autistic" for myself when so many other people had such greater challenges to face.

I was wrong. I was wrong then, and the well-meaning people who think the same way I did four or five years ago are wrong now. It is precisely because there are people who need supports that we must seize the Autistic identity. We can't stop there, though--if we did, we would only be a supremacist faction within the community. We have to accept that We are like your children. We have to come to terms with the things that we did to ourselves and the things that were done to us, and we have to put forward a collective effort to create a community where there is outreach, where we don't simply assert that children will be able to grow into autonomous decision makers, we show how it happens.

Each and every one of us should be proud to be Autistic, and we should be mentoring Autistic children ourselves. Not necessarily working with them professionally--not all of us have those talents--but at least finding the Autistics in our lives and our communities and connecting with them. We can be Big Brothers/Big Sisters, we can be involved in church programs (those of us who are religious), and we can simply connect to and share our stories with the people in our families who have Autistic children.

Leaving the Aspie label behind is not just a matter of altruism, either. "Aspie" is a diminutive form, and it diminishes us to accept it as an identifier. It reinforces, through its connotations, a sense that we are somehow naive about the world or that we lack something that we just won't ever develop. Even as it sanitizes us and presents us as "employable" or "no longer disabled", it provides an avenue for others to view us as highly specialized children with adult work efforts (at worst) or sexless workaholic nerds whose interior lives are dominated by narrowly tailored hobbies and not the business of adult life (at best). We should accept neither.

I want to close this essay by directly addressing a few objections that people who know me might raise. I am not writing this to blame parents, I am writing it to discuss ways in which all of us might improve. If you're currently part of the problem, I'm not mad at you, I just want you to change. Similarly, if you're doing a lot of things right, like protecting your child's privacy until he/she is able to write zir experiences for zirself, good. If you doubt that your child will ever be able to read at the level you're writing at but you stay your hand just in case, then I think that maybe you're a pessimist, but your behavior shows that you are on the side of the angels in this debate. If, however, you read this and went "You just don't know because..." or "I'm not like that, I just...", then I can only say this:

Don't you dare "Aspie" me. I know who I am and I know what I had to do to get the skills necessary to perform your "eccentric but functional" perception of me. It is a performance, though. All of this is (the blog, my books, personal appearances). It is held together with duct tape, anti-anxiety meds, and frequent trips to a dark and quiet room.

Don't presume to know my past or the range of my obstacles.

Tomorrow: The Myth of "Overcoming"