Blogging Against Disabilism

How important is language? How important is it to be able to speak?

I had a student in my college courses with a processing issue. They needed supports for auditory processing. They also proved to need supports for language. This was a smart person who could communicate; but I soon realized that although the speech was clear, I was doing a lot of the connecting and fill-in-the-blanks and word-order-untangling for them when they spoke in class. Because my own son uses odd word order, I did it without even thinking. I know exactly what the student was saying, and it was really wonderful; and in my lecture style, I automatically translated for the other students, because I often re-word what students say to give them appropriate and more exact vocabulary. No one thought the student was stupid, or not an asset to the classroom in any way. However, when I got that first paper, I was in for a shock. Also like my son, this student wrote exactly as they spoke- with odd word order, slightly misused words, and jumbled thoughts. I started paying attention to how the student spoke; and beyond the crystal-clear annunciation, it was exactly what I was seeing on paper. We worked hard on that writing, but there is really only so much I can do as a professor and three writing assignments.

My sons do not speak clearly. Neither of them. Joey has a sort of stuffiness to his speech, like he is trying to speak with a mouthful of bubbles. It was a lot worse when he was just getting started- it probably has to do with controlling his mouth and facial muscle tone. Then, though I compared my student to Joey, Joey's word jumble is a lot worse. I expect all this to improve as we work hard on it, with speech therapies and occupational therapies, his muscle tone and tense use and word jumble will improve. But will it ever be enough? Will he be able to get through a college class if he wants to?

And what about Andy? All of his substitutions and rapid pace has been determined by the school to be "normal"... but none of his classmates sound like this. Once we figure out what he says, it is clear that language is not the issue; but will people assume he is not intelligent because they can't understand what he is saying?

The answer, as we know from adults we know with speech issues, is yes. Speech is very much taken as a cue of intelligence. It is one of the social cues our society considered important. We forget how culturally determined those social cues are; and it is important to remember when we are trying to teach our autistic kids how to see and read social cues!

How we consider others is culturally determined. How we view others is culturally determined. How we communicate with and about each other is culturally determined. How we treat others is culturally determined.

And we can- and should- change culture. A culture where people are valued for who they are and what they can do, instead of devalued for what they can't, is a culture that can build and move forward in solving problems and functioning to everyones benefit. A culture of respect for other people means less crime, less violence, less bigotry; and so more exploration of life, more enjoyment of each other, and more understanding of the world- even universe- around us.

Move beyond the social cues, to consider the possibilities of the people around you. Some cues are useful. Some, in reality, are not. Just because a person cannot speak doesn't mean they cannot think. Or feel. Or be.

Are You Aware? XXVII

Well, this is it- April has come to a close, and with it, Autism Awareness Month. I hope this series has provided useful info to get a range of information and approaches to autism (whether you agree with all those approaches or not, it is good to know about them). You may have noticed that I focused more on sites and information about and by autistic people, information about education strategies and organizations, and support materials. This does, of course, reveal my own views and biases.

I have one more for you before we move on to Disability Awareness Day.

The Organization for Autism Research is not about finding cures, but providing information about education and services, statistical information, and treatments. Again, you may or may not agree with everything on the site, but it does have useful information, and lots of things to think about.

Autism is part of our lives. For each and every one of us, autism is a fact. We are autistic, our child(ren) is autistic, our cousins, our friends, our neighbors, our extended families- somewhere in that milieu, there is an autistic person. It is important that we gain understanding of autism and accept autistic people, just as we would want to be understood and accepted: with respect, with love, and with joy.

Happy Autism Awareness Month.

Are You Aware? XXVI

Feeling overwhelmed? Want some help and training in education techniques and strategies? How about workshops for educating your community (or helping you educate your community)? Check out Parents of Autistic Children (POAC). This is really a great resource for information and training.

**Note: this organization is out of New Jersey, but a lot of the info is good everywhere.

Wordless Wednesday: Taste of Summer

Class Observation Update

I have the report back from the class observation. It is a very brief report that I found more interesting in reading what the observer thought was important to note, rather than as anything really useful. There was very little opinion expressed. I was really worried about that, because often admin think of lecture-format classes as "old fashioned" and prefer more Mickey-Mouse approaches (where kids get up and do a lot of singing and dancing and playing with computers, often giving them facts in fun formats, but not really encouraging skills for critical thought, communication, writing, or making connections between facts and events). And when push comes to shove, these are intro classes, and I do them lecture-style. Not droning, one-way lecturing, but I share a lot of information really fast.

Some things I thought interesting to be important? They noted I responded quickly to the request to be observed. Um... what, you think I would wait weeks to respond to my boss? Are people that stupid? Also, they noted I "fulfill the requirement to turn in syllabi." Yeah, one time I mistakenly emailed my syllabus to the wrong address (the secretary had turned over, oops) and I got CHEWED. OUT. I seriously had no buttocks for weeks. Do people really not send in syllabi? Where are their buttocks???

They also noted that I was in control of the classroom, because the students were respectful. That was really interesting to me. I consider that really more about the students (especially the ones who showed up) than about me. It also was a striking contrast to the issues I've had with my online kids. My mom always says I have "presence." Maybe I really ought to implement that "one live meeting" and whip those online folks into shape. See if I can reduce rude email.

Another interesting note? That I could work the slide projector. Um... I'm an art historian. I'd better be able to work the projector. This implies to me that there was somebody who was trying to use the projector and couldn't work it. Yikers.

Otherwise, mostly just facts. I arrive on time, I set up the room before class starts, I ask and answer questions, etc. Oh, I was surprised how long they must have been in the room before I noticed them. The notes they made about what I did before class included a lot of stuff I had no idea they had seen. Need to be more aware of my surroundings. Seriously.

Are You Aware? XXV: A World of Extremes

When I read articles like this, I often wonder about the extremes our world seems to be pulling in to. And how many of the people I know don’t exist on either side.

On one side, folks who seem to believe that autism is only a deficit, something to be eradicated like polio. Do all of them believe that vaccines or heavy metal poisoning is to blame? I suspect that is not the case. What bothers me about this end of the interpretation spectrum is that Joey would not be who he is without autism. He would be a different person completely. There is something in this idea that denies who autistic people are as individuals, insisting they are actually someone else. That really, really bothers me.

On the other end of the spectrum is extreme neurodiversity. This is the idea that autism is “just a difference” and shouldn’t be addressed at all. This complete acceptance and embracing of autism may seem like a great idea, especially compared to the complete denial of the opposite extreme. However, there are problems here, too. Extreme neurodiversity wants to put an end to therapies such as speech therapy and ABA. If you‘ve ever tried to work with a bad therapist or poorly done ABA, you know why. If you have a therapist who is domineering, rather than supportive, what are you really training the child to do? What does it mean to be “functional”? Do all stims need to be squashed? What about the gifts my child has, the way he sees the world?

Here at Life With Joey, we prefer middle ground, thought, and individualization. This is a middle ground that rarely gets talked about in the media. We believe therapies are tools, and our purpose is to support Joey and provide him with the skills he needs to thrive and appreciate his talents and strengths… which, you might note, is the exact same purpose we have for using tools available for Andy. There are domineering parents in the world, with and without autistic children. If you just dictated to your child what they will study in college, you might what to think about that again- is that really supportive, or are you projecting yourself onto your child? There is a difference between guiding and forcing, and it is important to know the difference when trying to raise children (who will grow up whether you raise them or not.)

So well-done ABA can be a useful tool. Floortime, TEACCH, RDI, pivotal response training, PECS, sensory integration, speech therapy, occupational therapy, physical therapy… tools, not ends. Be aware that the first therapist you come across might not be a good fit. That finding what is right for your child or loved one can take time and work, and lots of research. Not everything is helpful or necessary for every child. Joey didn’t need 40 hours a week of pure discrete trial training. Often being aware of different methods and being able to actively adjust and mesh together different methods and understandings is key to individualizing your approach to your loved one. Don’t just dismiss things out-of-hand; check it out. Pay attention. Document what works.

For us, Joey needed to be able to speak and use language. It isn’t a matter of just putting a keyboard in front of him; he types like he speaks (the processing issue is in putting the words in correct order and tense, not just getting them out of his mouth). He needed to stop tracking in the classroom so he could focus and learn (he can come home and track to unwind all he likes). Yet he is still our Joey, and we wouldn’t want him to be anyone else.

New Development: Andy

So we are preparing for Andy to enter kindergarden. Andy is not autistic, but he has some definite sensory issues that need to be addressed. He can't deal with noise. He needs movement. And we're not even addressing his speech at this point- the school SLP keeps saying he's fine, but then I hear him next to other kids his age. And even by ourselves, he can be difficult to understand.

We had him evaluated, and it was determined he did not require special education. Well, OK, not even speech? Hmmmm. Stay tuned on that front.

Our OT put together a nice little letter about his needs and methods that might be effective. I sent it to the school. Today, I got a nice email asking me to make an appointment... not with the special ed coordinator/vice principal, but with the principal. I called and set it up with the principal's secretary right away.

I'm a little nervous. First, I'm leary of meeting with someone whom I was unaware of being part of special ed services loop. This was higher than I thought was necessary to discuss my child's placement. This could be a good thing, perhaps she needs to sign off on a 504, or I need to ask for one from her, as part of the process. Or it could be a railroading tactic- getting in there and being told there is no such thing as sensory integration dysfunction and I should shut up and go away. That happened when we noted the school OT wasn't doing sensory integration for Joey, and we had to go to the Special Education Director. I have to think of a plan in case this is a railroading- like putting the new special ed director on speed dial on my cell phone (and remember, I don't usually carry around my cell phone.)

Second, should I be prepping for this just as I would for an eligibility meeting, if I am going to go in and ask for a formal 504? I don't have a lot of time. The appointment is Thursday. What paper do I need to bring with me? Should I have Andy's notebook in order? I suspect it would be a good idea to be prepared. Perhaps having some statement from Joey's teacher- who has at least glimpsed Andy and his issues- might be a good idea. Or not. We don't want to get her in trouble.

Finally, what if I am told something like, we'll do this, but we don't do 504s?

Are You Aware? XXIV

The world of autism parents is a labyrinth of warnings, therapies, insurance, school personnel, services, institutions, government agencies, private agencies… and quacks. I had no idea that snake oil was so alive and so very well until I starting looking at what to do for Joey. Some of the stuff practically screamed “SNAKE OIL HERE. ALSO HAVE BRIDGE FOR SALE.” More often, it was far more subtle. Scare tactics were always a big red flag for us. “Cure your kid for $5000” was another common red flag.

Want to know the latest in what’s been studies, and what is woo? Ned a place to start your own research into different methods, theories, and therapies? Try Quackwatch. They even have an autism-specific site.

Are You Aware? XXIII

Sometimes you just need the basics to get you started. What is autism? NIH offers a basic overview page.

Here are some things autism is not:

Autism is not schizophrenia. However, I feel people should also be aware of schizophrenia, there are a lot of ugly myths abounding about it.

Autism is not bad parenting.

Autism is not mercury poisoning. No, it isn't. The symptoms do not match up. (However, I do recommend having your pediatrician check for heavy metal toxicity if you are concerned. There are valid tests for it, and valid treatments for it.)

Are You Aware? Stimey Edition (Gerbils)

Hey, someone might be thinking of you at 12:17am. And gerbils.

Here's a site about Gerbils.
Thinkquest's intro to gerbildom.
A free gerbil coloring page.
The ABC Gerbil Clan.
Twin Squeaks- where I first learned that most pet gerbils are Mongolian.
The American Gerbil Society
Sexy Gerbils. Seriously.
Church of the Gerbil.
It's a Yo-yo trick. Really.
Run! The gerbils are coming!
Do you support gerbil access to contraception?
Gerbil genetics explained.
Why we need spoiled gerbils.
Bonding With Gerbils. (Is that kinda like Dancing With Wolves?)

Enjoy.