Focusing on what we have in common

Declarations of a fixed opinion, and of determined resolution never to change it, neither enlighten nor convince us. Positiveness and warmth on one side, naturally beget their like on the other.

Benjamin Franklin

I had originally planned for this to be a short post to let everyone know that 29 Marbles is going to go on summer hiatus. As you can see, though, this is anything but a short post. A couple of things have come together in my mind over the last week or so that have led me to feel the need to make a few more parting remarks.

Here in the US this is an election year, which means that partisan politics is everywhere in the news. Much discussion about the value of the proposals, etc, but also quite a bit of discussion (as always) about the nature of partisan politics. Is it good? Is it bad? Is it necessary, or could we get by better without it? Some say it is vital, some say it is the root of all evil in the world today.

These thoughts were on my mind this past week while getting my daily fix of blogs, and I couldn’t help notice – as Wade Rankin has – that the autism community seems to be becoming increasingly partisan. Maybe it has always been so, and I’m just now becoming aware enough of the larger autism community to realize it. But even within the sub-communities of autism I’ve been part of I’ve noticed a hardening of opinions by many people. Intentionally or not, quite often this comes across as, “I’m right and you’re wrong, why can’t you just see that?”

Maybe this is an inevitable result as people explore a question, examine their beliefs and understanding of the question, and decide how to move forward. After all, at some point you do have to act, and that is infinitely easier if you have a clear understanding of what you believe and don’t have to worry about changing what your doing later because your beliefs change.

The other thing that happened this week is that I finally finished Walter Isaacson’s biography of Benjamin Franklin (which, by the way, I heartily recommend to anyone who is interested in Franklin or the history of the 18th century). Of all the great things that Franklin did in his life, the impact he had on the writing of the US Constitution. It’s not that Franklin wrote the Constitution – in fact, he was quite opposed to some of the final decisions that went into the document. Instead it was his role in getting the 13 states to open their minds a bit and actually listen to each other and compromise when necessary that resulted in a successful Constitutional Convention.

Like the early United States, the autism community is divided into several independent ‘states’, each with their own opinions, desires, strengths, and weaknesses. There are many differences, but there are also many similarities. Much of the dialog today in the autism community – I include all the blogs, organizations, support groups, &c as part of this community – seems to me to focus on the differences between the various sub-communities.

Maybe the differences between the two major parties in this debate – those who advocate neurodiversity and those who advocate a cure – are irreconcilable, but it seems to me, as a parent, that we all share the goal of making sure that there is a place in society for our autistic children and that they can find that place. To that end, I believe we need to find common ground and work toward that. Only by keeping dialog and discussion open, and really listening to what others have to say, can we achieve this.

Though this blog is going on a break, I will still be online this summer and I expect you will see me writing in comments to others’ blogs. Have a great summer everyone (and for those of you south of the equator, I hope your winter isn’t too harsh).

From Franklin’s closing address to the Constitutional Convention:

I confess that I do not entirely approve this Constitution at present; but sir, I am not sure I shall never approve it: For, having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions even on important subjects, which I once thought right, but found to be otherwise. It is therefore that, the older I grow, the more apt I am to doubt my own judgment and pay more respect to the judgment of others.

Most men, indeed as well as most sects in religion, think themselves in possession of all truth, and that wherever others differ from them, it is so far error. Steele, a Protestant, in a dedication, tells the Pope that the only difference between our two churches in their opinions of the certainty of their doctrine is, the Romish Church is infallible, and the Church of England is never in the wrong. But, though many private persons think almost as highly of their own infallibility as of that of their sect, few express it so naturally as a certain French lady, who, in a little dispute with her sister said: “I don’t know how it happnes, sister, but I meet with nobody but myself that is always in the right.”

In these sentiments, sir, I agree to this Constitution with all its faults – if they are such – because I think a general government necessary for us…. I doubt, too, whether any other convention we can obtain may be able to make a better Constitution; for, when you assemble a number of men, to have the advantage of their joint wisdom, you inevitably assemble with those men all their prejudices, their passions, their errors of opinion, their local interests, and their selfish views. From such an assembly can a perfect production be expected?

It therefore astonishes me, sir, to find this system approaching so near to perfection as it does; and I think it will astonish our enemies, who are waiting with confidence to hear that our councils are confounded like those of the builders of Babel, and that our States are on the point of separation, only to meet hereafter for the purpose of cutting one another’s throats. Thus I consent, sir, to this Constitution because I expect no better, and because I am not sure that it is not the best.

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You learn something new everyday (at least I do)

I love figuring out how things work. In fact, I started blogging mainly because I was interested in the technologies and processes behind it. Not the least part of this was gaining a better understanding of HTML and Style Sheets. I’ve not really done much on that front since I set up this template here, but a recent article at plaintxt.org has got me going again.

Recently I deleted every post I had on this blog. Why? Because I learned that everything I knew about writing mark-up for my blog was wrong. Not really wrong, actually, but just uninformed.

Scott’s focus is on WordPress, but I think the basics apply across the board. I share his interest in minimalism in blog design, and expect his advice will come in handy as I work on this blog template in the near future.

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On the internet, nobody knows you’re autistic

Consider the following excerpt from an autism advocacy blog:

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.

Was that written by a man? Or a woman? Young or old? Black or white? Autistic, or not?

In my line of work, I spend a lot of time on the phone and on e-mail. It is safe to say that I’ve never met, and will likely never meet, as many as half the people I interact with in the course of a day, week, month. Occasionally, however, I do meet face to face someone I’ve known virtually for a long time. Without fail, my thoughts of what they will be like are completely wrong. (Imagine your favorite radio DJ, then look up their picture online: you’ll see what I mean.)

I imagine the same is true of my friends and acquaintances on the web. In the cases where I have actually met some of these folks, it has definitely been true. Unfortunately, the norm in our society is to allow a person’s physical appearance and behavior affect our impressions of that person. In the case of autism, especially what is commonly – though mistakenly – referred to as ‘low-functioning’, this is especially problematic.

The beauty of the internet is that your physical appearance doesn’t matter. Your method of communication doesn’t matter (granted, this is mainly because everyone communicates the same way online). People accept you – or not – for what you say, for who you are. Not what they think you should be capable of because of how you look or sound. We can only hope the offline world catches up.

BTW, the excerpt above comes from the Ballastexistenz blog. For an example of someone caught in the act of judging by appearances, check out Kev Leitch’s post If Someone’s Not Broke, Don’t Fix Them.

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New accessible gadgets

This post doesn’t really have anything to do with autism, but the emphasis on making these gadgets accessible to those in wheel-chairs caught my eye. Both of these are from the Wired magazine Gear Factor page today.

Wheelchair accessible gym machine: Designer Ryan Eder has designed the Freemotion Access, a strength-training machine not too unlike those at most public gyms, but with modifications that make it accessible to wheelchair-bound and able-bodies patrons, letting everyone get a workout.

Car for disabled drivers: The electric mini-car, designed in Hungary, has no front seat; a hatchback opens, allowing the driver to roll his/her wheelchair into driving position. The car is controlled by joystick but tops out at around 25 mph….

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“Men must attend IEP meetings”

“Men must attend IEP meetings.”

This advice comes from Charles Fox at the Special Education Law Blog in a Father’s Day post discussing the role of fathers in the advocacy process. A short excerpt:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that “men must attend meetings.” [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.

His list of 16 basic principles of advocacy is well worth reading, printing out, and keeping in IEP file to help you prepare each time you must go through the process.

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Developmental issues and the assembly line mentality of modern education

Every day, it seems, I come across a new autism resource. (New in the sense that I haven’t seen it, not necessarily ‘new’ new.) I recently found Hidden Recovery, “A parent’s experience with High-Functioning Autism. Diagnosed at 2 with PDD-NOS, and recovered by kindergarten.” I’ve not had a chance to read through the entire site yet, but have come across some interesting things. (I know that some will be put off by the use of the “R” word, but if you can get past that there is some good insight and lessons from past experience that all autism parents can make use of.)

One statement from the home page caught my eye (emphasis mine):

They are unaware of the fact that this is THE NEW GENERATION of typical peers – 33% of the kids on average in a classroom in America have some developmental issue. It is now typical to have all sorts of issues in these classrooms, identified or not.

Thirty three percent have development issues. What exactly does this mean? Is this a reflection on the human gene pool, are things just going to hell? I don’t think so.

I need to do some more research on this, and anything readers can point me to would be highly appreciated: It seems to me that the problem isn’t that the kids are developing any differently in general, but that our (by this I mean “society’s”) expectations for what kids should do, and be able to do, at certain milestones is changing.

For instance, to graduate high school kids are expected to have a certain level of knowledge. At least that’s how it used to be. More recently, to graduate high school kids are required to successfully complete a certain number of required and elective courses. (This doesn’t necessarily equate to knowledge of those subjects.) College entrance tests such as SAT or ACT kind of measure the knowledge, but are not required for high school graduation.

More recently still, the use of standardized testing has become more prevalent. I think I could go with a test for getting a high school diploma. The problem comes in when you start having these tests at more and more of the intermediate grades. As if every child actually develops along the same timeline!?! As it always seems to, it comes down to the bottom line – $$$$.

Education in the US today (in general) is treated as an assembly line: You’ve got the raw materials (students), the plant (schools), the assembly line workers and supervisors (teachers and administrators), and of course the managers (school board and other government). The line workers and supervisors are interested in producing the highest quality product they can while managers expect maximum productivity at maximum efficiency. The only way to prove you are doing this is to have metrics at the end of a production period that you can look at and use to adjust for the next production period, and the shorter the production period the more quickly you can adjust for problems.

Obviously – at least to me – this isn’t a reasonable way to approach the education of the world’s future, autistic or not.

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Autism and the DSM (part 2)

I concluded my last post with this question:

If I think that autism should be in the DSM, am I not admitting that there is something ‘wrong’ with my child?

The answer is, as so many people have helped me figure out, a resounding NO.

Though autism is, as several folks have pointed out, a neurological condition as opposed to a mental illness, inclusion of autism in the DSM has provided a means of making the public aware of autism. It has also served as the basis for parents to get needed services and accomodation from local school districts and communities.

(“Wait a minute,” I hear some saying. “If there is nothing wrong with your autistic child, why does he need ‘services and accomodation.'”

The short answer is that it is ‘society’ that needs to be ‘cured.’ Cured of its misconceptions and stereotypes. Cured of its very short-sighted, narrow-minded approach to what it ‘normal’ and ‘good.’ When that happens, I won’t have to fight for the things my child should already be getting. (OK, that wasn’t so short.) And while this is true of society in general, it is especially manifested in how education is approached here in the US. But that is a whole ‘nother rant that I’ll defer until later.)

Unfortunately, because the DSM is a manual that describes disorders – bad things – it has also served to encourage and reinforce the notion among the un-informed public that autism is bad and that autistics need to be fixed.

It also gives professionals justification to ‘kill’ autistics in the hope that they can be replaced with a normal person, as related by ballastexistenz, an adult autistic:

In 1996, I was living in an institution in which a doctor explicitly told me that he wanted to kill the person I was and replace me with someone else, and that he was going to, psychologically, do exactly that to me.

For now, we need to keep autism in the DSM, because it serves as the way for autism parents to help their children get the services they need to succeed in the world. Every parent of an autistic child who is working with (or, unfortunately, against) their local community to raise awareness is part of the “grass-roots” effort to raise awareness of what autism is and isn’t and what our children are capable of achieving.

At the same time, we need to continue to advocate at the highest levels, to lay the groundwork necessary for the grass-roots work to take hold. As more and more individuals become familiar and aware, it will be easier to implement change from the top down.

Eventually, word will get out that there is nothing ‘wrong’ with our kids and we won’t need to have autism in the DSM. I hope this day comes sooner rather than later.

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