29 Marbles

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.

tagged as: Autism, Amanda Baggs

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….

tagged as: Gadgets, Wheelchair

“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.

tagged as: Autism, Parenting, IEP

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.

tagged as: Autism, Education

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.

tagged as: Autism, DSM

If there is any theme to my beliefs and thoughts about raising an autistic child, it is this: Raising an autistic child is just like raising any other child, only different. As the parent of two teen-age boys, one autistic and one not, I know the challenges and joys of raising both.

In the Columbus Dispatch article Autistic kids fall victim to parents who run amok, columnist Deborah Kendrick addresses this very theme (emphasis added):

Anyone who has been a parent has at least one terrible moment where caring for a child seemed unbearable…. None of my children is autistic. They did, however, have special needs, because all children have special needs.

One mom in Autism Every Day states pathetically that her child will never marry. “How do you know that?” is what my heart is screaming at her….

I’ve heard parents of deaf kids, blind kids, kids with Down syndrome and other disabilities make the same kinds of pronouncements: My child will never (fill in the blank). To all of them I say no human can predict what another human will accomplish.

tagged as: Autism, Asperger’s Syndrome, Parenting

In my post So what?, I referred to the autism mothers shown in the video Autism Every Day as selfish and whiny. To any autism parents who took my comments as personal insults, please allow me to apologize. Believe me, I know that there are times when you can’t help complain, because there is often a lot to complain about. The many autism parents I’ve met online through this blog and other forums are doing their best to get through the hard times and enjoy the good. It was not my intent to trivialize or dismiss what we as autism parents experience, yes every day.

What really irritated me about the video was the depiction of these autism mothers as selfish and whiny. But I guess I shouldn’t be too surprised at the content and message of the video, considering the source – Autism Speaks. The following is excerpted from the Founder’s Message (emphasis added):

• In 2004, our grandson was diagnosed with autism. Helpless, we watched him slip away into the cruel embrace of this disorder…. We launched Autism Speaks in February 2005 to help find a cure for autism by raising the funds that will facilitate and quicken the pace of research, to raise public awareness of autism, and to give hope to all those who suffer from this disorder.
• Few disorders are as devastating to a child and his or her family. Instead of Little League games and sleepovers, most people with autism will face lifelong supervision and care, exhausting a family’s financial and emotional resources.
• The pace is quickening, and, God willing, we won’t stop until we have conquered autism—one child, one voice at a time.

And their mission:

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Though I don’t necessarily believe in the possibility (or need) for a cure of autism, I don’t begrudge those who seek a cure. But the mission stated above, all of the work being done and money being spent by Autism Speaks and similar organizations, seems to leave out a very important piece of life with autism – namely, living with autism. The mission, as stated, is basically saying, “We’ll have this problem figured out soon, in the mean time just hang tight.”

The strange thing, though, is that the Autism Speaks site is filled with information such as “How to cope” and “How to grow.” Why didn’t this show up in the video?

As with many of my posts, I started on one thread, ended up on another (with yet another thread – cure and prevention – lurking just below the surface), and found myself not really knowing what my point is (if, indeed, there is one). I think I am still suffering from Ack! and Thbbbt!, trying to get all of this information sorted and figured out. Though intellectually I know that is not really possible, I still hold out hope.

tagged as: Autism, Asperger’s Syndrome, Autism Speaks