Thursday, October 30, 2008

Solutions to Self-Advocate/Adult Autistic Issues

A lot of autistic self-advocates criticize the mainstream autism community for focusing so much on children on the spectrum, rather than arranging for help for the serious issues that adult autistics face. It's a matter of focus - on children and cure, as opposed to adults and support.
But it seems like many autistic self-advocates (myself included) do the same thing we criticize others for.
A couple of events made me realize this. First, for quite awhile, I've been a volunteer expert at AllExperts in the category of autism. And I've easily handled many questions from parents of autistic or possibly autistic kids, discussing issues such as how to get a kid to stop playing with spit and how to tell if your 9 week old is autistic without much difficulty. That's the typical sort of questions I get, showing the same kind of focus that autistic self-advocates criticize in parent-run autism organizations.
But one question I got was something I really struggled with. An autistic person was kicked out of his home, living in a salvation army hostel, and asked my advice. I hope my answer helped, I think I did fairly well, but it was really hard. I had to do a bunch of research and pondering and try to figure out if the organizations I was reading about would do anything to help him. This wasn't an easy answer to write like all the parent questions.
Recently, I was reminded of this by a question that struck the same feeling in me. This one was posted on several autism listservs I frequent. An autistic woman who lives in a group home is currently being threatened with going to jail for having what appears to be a relatively minor autistic meltdown. She didn't hurt anyone, yet they're calling her violent. And I don't know how to help her, what to say to her.
We use stories like these in our activism, to show why more support is needed, but when we are called upon to help someone in a situation like that, what do we do? We don't know how to help, we don't know what to do. We don't have the easy answers like we do for parent issues. And that's at least partly because even as we criticize their focus, we let it direct our focus. So we don't think as much about how to help these people no one seems ready to help.
It seems to me that not only are your beliefs about various issues important, but so is what you choose to discuss. And so often, the curebies successfully direct conversations about autism to their issues, their focus, and we don't fight that well enough.
So I'll do the research to see if I can help this woman. I'll try to at least direct her to someone who can help. And in general, I'll try to find, or make if I can't find, supports and solutions for these issues.

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Sunday, October 26, 2008

It's a Gift, You're Not Owed Anything

I'm just finished attending a conference by the Association for Research on Mothering, where me and my mother presented regarding the 'war on autism'. I've got a lot more comments to make that are inspired by this conference, but here's one.
Very often, parents of autistic kids talk about feeling 'cheated' out of something by having an autistic child. Here's an example:

"I prayed before I ever had kids that god would give me children that have no mental or social problems. I believe that god ruined him. What if the best my child can do is work as a greeter at Wal-mart, how does one accept your child is doomed, ruined, a waste of human life?"

At ARM, I've been hearing about the concept of matriarchy and the gift economy. A gift economy is based not on exchange, but on gifts and fulfilling needs. And according to the advocates for this model that I've just met, the prototype of the gift economy is a mother raising a child.
And this really clarifies a big problem with statements like the above quote. You are not owed anything by your child. You are giving them a gift, a profound, life-creating gift, with no strings attached. They may give you a gift in return (and I think all children have the potential to give their parents such gifts, if their parents can see it) but you are not owed anything.
My younger brother has a tendency to interpret 'maybe' as a solemn promise (although he seems to be outgrowing this). And that's exactly the mistake that these parents are making, when they feel cheated by a child not being like they expected.
You are not promised a normal child. You are not even promised a child. You are giving the gift of life to your child, with no guarantee as to the results of this gift. Your child could live only a couple of weeks in utero. Your child could grow up normal and then die unexpectedly at 17. Your child could grow up to be a greeter at Walmart rather than the high-powered executive or whatever that you'd hoped for. You must remember that your hopes for your child are just hopes, not guarantees. You have not been promised anything, you have not made a contract with your child, you've given them a gift. And that's what it means to have a child.

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Tuesday, October 21, 2008

We're Not Silencers, We're Silenced Too

Traditionally, the people talking about childhood-onset disability and expressing their views of it have been professionals of various sorts. If you read stuff about childhood disabilities from older time periods, before the 1950s or so, it's hard to find anything written by nondisabled parents of disabled kids - it's virtually all doctors, teachers, psychologists, etc. It's less so now, but many parents still get what Peggy Lou Morgan calls the 'dumb parent treatment'.
As a result, it seems like some parents become very vigilant about making sure their voices are heard, rather than 'experts' who know nothing about their lives dictating what's going on. This is a good thing. It's an adaptive response to being silenced. It means you are advocating for yourself and your child, and both of you stand to benefit from it.
But when these parents meet disabled self-advocates (especially, it seems, when parents of autistics meet autistic self-advocates), too often they don't turn this off. They don't see us as different from professionals in the field of autism. And when we start to say that we need to be heard, rather than just having parents of kids like us talk, and we say things about parents not understanding their children and making mistakes, the parents see it as 'yet another expert come to shut us up and tell us what we're doing wrong'.
And the reaction that is a good and productive thing against the know-it-all professionals who aren't listening to parents gets directed at people trying to speak up about their own lives, and the lives of others like them. People who are even more silenced than parents of disabled kids, whose voices are less often heard. And these advocate parents end up reinforcing and perpetuating oppression against their own children.
What parents need to remember is that just because you are the one being silenced and treated unfairly when talking to professionals, doesn't mean that's true in other circumstances. You can be the perpetrator of oppression in one setting, even though you're the victim of it in another setting. Parents need to remember that fighting back against oppression can seem to the priviledged ones like oppressing them, and that you can be more priviledged than another group even though you're part of an oppressed group too.
And most importantly, parents need to remember who and what they are fighting for. They are fighting for their children. And we, (in the group sense) are their children. Parents should imagine their child, grown up and able to speak or type their self-advocacy, talking to other parents about what they want for children like them. Would you want those parents to reply the way you have?

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Monday, October 20, 2008

Disability Teaching a Lesson?

The next Disability Blog Carnival is at Barriers, Bridges and Books. On that blog, Terri recently posted a reminder about the blog carnival, in which she said:

"What have you learned or become that you might not have without and encounter with disability? Have you become a medical expert, education specialist, behavioral manager, mechanic, efficiency expert, law specialist, problem-solver, activist, interpreter, ambassador, poet? Or something else that I haven't thought of....Has your faith, creativity, determination, efficiency, patience, impatience, techno-savviness, assertiveness, connectedness, sensitivity, sense of humor or some other trait grown or been changed? Any of the above? All of the above? None of the above, but something else entirely??"

That question assumes that disability is something that entered your life at some point, changing your life from previously not involving disability, or not to that degree. As such, it is profoundly inapplicable to someone like me.
What if you never had a life without disability?
It reminds me of this video, in which Amanda Baggs says:

"One of the things you mentioned was that there was an advantage in being disabled from birth in that you're doing all your adjustment as you grow. I'd actually take it farther than that -- being disabled from birth, there is nothing to adjust to."

It is this adjustment from a nondisabled life to a disabled life (and I'm using this to apply to those with disabled loved ones as well) that brings those kind of 'lessons' that are relatively easy to name and describe.
Whereas for me, I know things I would not have known if I was neurotypical, but I can't really name them as things I have 'learned since before disability' because there never was any 'before disability'. I was born the way I am. I may have regressed somewhat at 18 months, but even if that was something I'd have perceived as an unexpected and significant change in me (rather than just growing up or reacting to my circumstances) I can't remember that far back. I didn't have the experience of growing up as a standard person, fitting in with others and our society so fundamentally and identifying with the standard tale' of how people in our society live and what they are like. Instead I grew up with others treating me like I should be or should have been the standard person, but I wasn't.

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Friday, October 17, 2008

Does the Owner's Personality Affect the Dog's Behavior?

I just sent the following e-mail. I think it's pretty self-explanatory.

"This is a reply to '10 life-threatening behavior myths' in the September 2008 issue of your Veterinary Medicine magizine.
In that article, Valarie Tynes refers to the belief that 'crazy owners have crazy pets' is a myth, citing two articles to show that owner personality does not influence pet behavior problems.
I looked up those two articles cited. One of them, written by Voith et al in the journal Applied Animal Behaviour Science in 1992, was not in fact a study of owner personality, but of anthropomorphising or 'spoiling' behaviors towards dogs such as feeding them treats, letting them on furniture or your bed, etc. While such behavior may be correlated with owner personality, such a correlation was not studied in this article.
The other one, written by Dodman et al in the Journal of the American Veterinary Medical Association in 1996, did study owner's personality, as measured by Myers-Briggs typology, but only studied dominance aggression. Evidently, dominance aggression is not related to owner's personality, but that does not mean other behavior problems aren't.
Therefore, Valarie Tynes does not appear to have sufficient evidence to make such an overarching claim regarding the presence or absence of a correlation between owner personality and behavior problems."


Wednesday, October 15, 2008

'My Child Has Driven Me To Poverty'

It's Blog Action Day today, and the topic is poverty. Well, I could write about the obvious stuff, like how many disabled people are poor, but I won't. Instead, I'm going to write about how autism curebies talk about poverty.
In the Autism Every Day video, a parent talks about going deeper and deeper into debt, paying for treatments for her autistic child. She jokes about 'sending him to Harvard over and over again'.
And this is treated as if it is the child's fault - or, technically, their autism's fault. When plenty of parents have autistic kids and don't spend way more than they can afford on treatment. I can't imagine how someone could drive themselves into poverty to treat a developmental disability. I wonder where their priorities lie, that getting their child to act normal matters more to them than having a home or food on the table.
Another source of poverty for parents of autistics is that their child's needs can disrupt their work. Autistic kids are more likely to get sent home from school for misbehavior. Many of us need more supervision than most kids our age. Babysitters are harder to find - plenty of people who are willing and capable babysitters for a 2-year-old in diapers can't or won't look after a 10 year old in diapers. (And babysitters can also be less willing/able to look after mildly autistic kids, more because they get into/worry about getting into conflict with the child than because of the child physical care needs.) Autistic kids often have trouble with transitions, such as getting ready in the morning, and may have more trouble actually getting ready as well.
Most of these problems are not due directly to autism. They are due to problems with the school system, problems with availability of services, problems of discrimination from babysitters, bosses and others, or other societal problems. Yet that's not usually where the blame gets put, or the recommendations for changes. Rather, like spending exorbitant amounts on therapies, the blame for job disruption is usually placed on autism.
Jobs can also be disrupted by the curebie/autism-tragedy mentality. Parents are stressed out and upset, and don't work as well because of that. Therapies take time & energy - if you're running a home-based ABA program 40 hours a week, that's a lot of work, especially if you are doing many of those hours yourself. There is a roller-coaster of emotions, from despair when your child has a particularly 'autistic moment', to hope when you hear grand promises from a therapy program, to elation when your child shows the slightest sign of 'progress', to anger when someone tries to deny your child a 'Cadillac'* of services, etc etc, that distracts from work. Being a curebie parent can be exhausting.
But the impact of your perspective on autism is never seen or acknowledged. It's so taken for granted that it is literally invisible. It's the 'natural way' to view autism, the way everyone views it. The existence of another viewpoint doesn't even occur to many parents. So yet again, autism takes the blame.

* There's an analogy floating around that says the school system is required by law to provide a basic car (eg a Ford) for the child, but they aren't required to provide a fancy car like a Cadillac.

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Someone (Hearts) My Blog?

I just got the following award from Lindsay at The Autist's Corner:

Cool! I guess someone likes my blog.
Apparently I'm supposed to nomitate seven people now. I hate this sort of 'chain letter' thing, however, so I'm not sure what to do. I guess I'll wait around for awhile, and I want to give an award to someone (who, unlike Shiva, hasn't already got one) I will.


Tuesday, October 14, 2008

What I Saw Today

Later this month, my mother is (with my assistance) presenting a conference paper about the 'war on autism' metaphor. It's a very important topic, and for the most part I've enjoyed helping her prepare her conference paper. But today...
Today, my mother said she wanted several pictures from the Autism Every Day video. Because she doesn't understand computers very well, I volunteered to get the pictures for her. And to do that, I had to watch large chunks of the video. And you know what I saw?
I saw a child kiss her mother, as her mother complains about her 'always wanting attention'. I saw that same child later being prompted to say 'I love you' - the mother would rather her say a meaningless prompted phrase than spontaneously show her love. I saw that same girl come up to her mother when she was talking about something upsetting and say 'what are you doing?' in a dismayed tone, then walk over to look out of the window as her mother talks about contemplating murder/suicide in preferance to a bad school placement (I've been in bad school placements, and they're not pleasant. But they're not worth dying over.) I saw a child being filmed having his diaper changed, and his mother commenting about how much she hopes he'll be toilet trained soon. I saw a kid trying to engage his mother in interactive stimming, and her saying 'no' and indicating he shouldn't stim. I saw parents pinning their only hopes on a slim chance of a cure, rather than learning to live with a different kind of child. I saw the stark dichotomy between kids being kids and parents talking tragedy.
And my reaction was the same as it was when my teachers treated me unfairly, when my classmates in a new school rejected me for no apparent reason, when people in various extracurricular programs expelled me or told my parents to take extra measures to 'control my behavior' in those programs. Why don't they like me?
Some people think this is just parents expressing their feelings, to raise awareness in order to help their children and others like them. That's not what this is. This is hate. Oh, sure, they 'love their children' - they don't really. Not in the ways that matter. You don't treat people you love like that. If they were talking about neurotypical kids like that, very few people would consider them loving parents.
Autistic people are supposed to 'lack empathy'. OK, if you guys have empathy and we don't, prove it. Watch that video, and imagine they're talking about you. Imagine your parents saying things like that about you, or watching someone else say those things about traits their kid shares with you. If you're part of another group that is discriminated against, imagine watching people say things like that about your group in the presence of children of that group. Imagine fathers talking about how they hope they can get a sex change operation that can make their daughter a boy (not because she is actually a boy inside, and has said so, but because they'd rather have a boy). Imagine white parents talking about thinking about doing a murder-suicide with their black child because the school system is segregated. Imagine straight parents talking despairingly about how their gay kid has had 'so much stolen from them', because, among other things, they'll never marry a girl and have kids with her.
Oh, you may think it's different, because autism is different. It isn't. Yes, we can't do many things neurotypicals can. But our worth, our happiness, does not hinge on that. It should not hinge on that. We deserve to have parents who love us, not their images of what we were supposed to be. We deserve to have parents who pay attention to our expressions of love for them, rather than demanding something artificial instead. We deserve to have parents who can talk about our futures without dread and tears, who can see a future where we remain ourselves and get treated with respect.
Luckily for me, I had that. But so many kids do not.

PS: I'm really upset right now, so I didn't phrase it nearly as diplomatically and carefully as I usually would. If you are a parent of an autistic kid and are offended by this, just think: your kid might someday write blogs like this. Try to make sure they can truthfully say the second-to-last sentence 'Luckily for me, I had that.' If you're thinking 'I just want my kid to be able to write like you can' and using that to justify all this, then remember - what's the point in teaching your child to communicate if you're not willing to listen?

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Friday, October 03, 2008

Are Lovaas's 'Recovered' Kids Really Normal?

Most of you have probably heard of Ivar Lovaas's 1987 study in which he reported that 47% of autistic kids who got early ABA had 'normal functioning' and were therefore cured of autism.I just found a follow-up study published in 1993 that examined his experimental and control groups, including reporting test results for each of the 9 'recovered' kids (10-16 years old). The results are very interesting, and not exactly consistent with his claims.
WISC-R verbal, performance and full-scale IQ and subtest scores are reported. According to this source, a difference of 11 or more points between verbal IQ and performance IQ is clinically significant. Out of the 9 'recovered' kids, 7 showed a clinically significant difference between VIQ and PIQ by that definition (3 higher verbal IQ and 4 higher performance IQ).
The same source describes the use of a discrepancy calculation of subtests that are significant strengths and weaknesses, defined by being 3 or more points from the average. Normal kids typically have no significant strengths/weaknesses on verbal IQ, one on performance IQ and two on full-scale IQ. Assuming that more than that number of discrepant subtest scores indicates abnormal scatter, 5 children had abnormal scatter (all of them showing VIQ/PIQ discrepancies).
On the Vineland Adaptive Behavior scales, all (except one kid who wasn't tested) scored within the normal range on all areas, but 5 had at least one score in the borderline/low normal range (70-85). I don't know of any norms for discrepancy between Vineland scores and IQ, but 6/8 of them had Vineland scores at least 11 points below IQ (Vineland scores have the same normal range as IQ). This suggests they were functioning more poorly in practical areas than their IQs would predict. (And makes me very concerned for these kids, as an unrecognized mild self-care impairment can cause serious problems once you enter adulthood.) In terms of the Vineland Maladaptive Behavior Scale, 3 kids had clinically significant behavior problems on that scale.
On the Personality Inventory for Children, 6 scored in the clinical range on at least one subscale (2 not tested). Lovaas noted high scores on the Intellectual-Screening subscale could be explained by their history of classic autism, because many of the questions on that scale are retrospective, such as when the child started talking. Excluding that subscale (on which 3 had scores in the clinical range), 4 had scores in the clinical range on at least one subscale (not counting the Lie, Frequency and Defensiveness scales that try to test how honest the person was, on which 2 kids scored highly - one of whom had no other elevated scores). Another 2 had at least one score in the borderline range, though none in the clinically significant range.
Overall, combining all three measures, all the children had definite abnormalities (VIQ/PIQ discrepancy and/or clinically significant behavior problems). Not enough information is available to decide if they were still autistic (though many of the abnormalities they showed are common among autistics) but they certainly weren't neurotypical.

Lovaas (1987): Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9

McEachin, Smith & Lovaas (1993): Long-Term Outcome for Children With Autism Who Received Early Intensive Behavioral Treatment. American Journal on Mental Retardation, 97(4), 359-372

[Correction: one child, RS, should actually be classified as possibly abnormal rather than abnormal. I misread one of his PIC scores.]

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Special Accomodations and Proving Disability

It seems to me that a lot of disability accomodations go about it the wrong way. They have a certain thing everyone is supposed to do a certain way. When a disabled person says 'This is not fair. I can't do it that way' (or they can't do it as well as expected) then the system says 'OK, prove to us you are disabled, and we'll put you in a special category that get to do it a different way.'
There are several problems with this model:
a) it depends on labels and testing for disability. If you're undiagnosed or misdiagnosed, you won't get the help you need, even if you know that you need that kind of help. Even with an accurate diagnosis, you might not quite meet their criteria and still not get any help. (For example, some autistic assistive communication users have lost needed services because they now score over 70 on an IQ test.)
b) just because it's not as desperate for normal people as it is for you doesn't mean it wouldn't be helpful to them. Very often, disabled people can signal a problem that affects many people, simply because it affects them more. But if you single them out for help, the others with less acute needs for the same thing don't get it. For example, one study tested the use of voice recognition software to create 'subtitles' on an overhead as a professor spoke. This was intended for several deaf students as an adjuct to signed translation, but several hearing students also started looking at the display. Some people, like my mother, find it easier to understand text than speech, even though they aren't labeled with any disability.
c) it singles out the disabled person as a 'special case' rather than treating them as part of the group. Because there is no accomodation for differences except in extreme cases, other students may come to resent the disabled student for getting special bonuses (I remember how upset I got when the teachers let my CP classmate chew gum in class but wouldn't let me do it) or else pity them for needing those accomodations. Granted, there are many reasons for normal people to have negative views of disabled people, and changing this one thing won't eliminate that completely. But it will help.
What is the alternative? Make accomodations available for everyone, like they do with curb cuts, elevators and talking walk-lights ("the walk-light to cross college drive is now on. Bee-dup."). It won't really lower the quality of performance in a class if kids are allowed to type essays rather than writing them longhand (of course, they should all be getting practice writing longhand, too) or a professor passes out notes to their lecture to any student who wants them. In cases where there truly is a different need, such as teaching different subjects to a developmentally delayed kid than to their classmates, there are two options - either let people self-select which system to go with, or accomodate everyone regardless of labels (with this specific example, a system where children work on units and go to the next one as soon as they pass the earlier one would work well).
If we do it this way, undiagnosed disabled people will still get the help they need, disabled people won't be singled out as 'special needs', nondisabled people who'd benefit from certain accomodations (such as gifted kids) may be able to get them, and the time-consuming, wasteful and adversarial beaurocracy of determining who gets help will be eliminated. Even if we don't do this for every accomodation, we can do it for most of them and get similar benefits.

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