'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.

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?

Sirens and Autistic Siblings

I read an article called Sweet Surrender by a parent of an autistic boy who compared neurodiversity activists to 'sirens' urging people to give up fighting for their children. I tried to reply, but something was going wrong with my account so I couldn't.

I personally know several autistic people who have serious difficulties with communication and self care. One boy I know communicates mostly by pointing and grunting, sometimes using a picture communication device and sometimes signing a few words and very occasionally saying words like his name. A girl I know runs around saying words and phrases which are only loosely meaningful and she runs into trees and people because of motor planning problems. I take this girl swimming and she can lift her arm and leg and sometimes pull her pants down but otherwise can't dress or undress herself. I also worked with another girl who in reaction to a change in routine, started screaming and banging her head and when I tried to stop her from hurting herself she bit me very hard. All three of these people are on the autistic spectrum.And all three are wonderful, unique people. If I could cure them of their disabilities with no side effects, I wouldn't, because they wouldn't be the same people.I'd like people to stop equating the kinds of needs and problems people like my friends have with being defective people who need to be fixed. And it's not that they have some special talents. If they have such talents, they are not very easy to observe. But all of them are special people with their own kind of beauty.I am in favor of helping these people. The girl who bit me lives in a foster home with at least three other disabled kids who need a lot of attention themselves, and her foster mother is very overworked and stressed. She doesn't seem to have enough support to care for the children in her home. Also, I would love for them to be able to communicate more. If that girl could've said 'we need to use the other dressing room, I'm not used to this one' she'd have been less likely to hurt herself or me. The other two aren't aggressive or self-injurious, but they understand a lot more than they can express and it must be frustrating to be unable to tell us what they're thinking, especially when they need something.Also, I don't see how it's any easier to accept your child than try to cure them. I used to think there was a big difference between mildly autistic people and severely disabled people, and that of course we don't want severely disabled people. When I challenged that and became more accepting of severely disabled people, it became painful to read discriminatory things that I used to be fine with. A parent who decides their child needs to be accepted for who they are will find it harder to deal with the well-meaning people who want to change their child. Also, what supports there are for disabled people often come in packages that require people to deal with a lot of discrimination. Besides, it is hard to accept that you have been discriminatory, especially if it has hurt someone you care about. If you are disabled, accepting yourself makes it easier, but if you can blind yourself to discrimination and have it not hurt you, that is easier than fighting it.

Also, my Mom found a New York Times article called Her Autistic Brothers, about a 14 year old with autistic twin 16 year old brothers. A lot of the article is pretty good, but there's some parts I don't like:

"Because of the particular challenges of autism, siblings of children with the disorder tend to have a harder time than siblings of children with other sorts of special needs: they enjoy fewer positive exchanges with their brothers or sisters and show more behavior problems themselves. Fewer positive interactions might simply follow from the fact that the disorders on the autism spectrum are characterized by social deficits — from difficulty with eye contact and absence of reciprocity on the milder end to total lack of speech in severe cases. But it has also been shown that typically developing children have trouble forming a concept of autism, which may itself have an impact on the way they relate to their siblings."

Firstly, it's far worse to be a sibling of a kid with rages. I've been a foster sibling to two kids with psychological issues who both had rages, and the effect is similar to being a child living with spousal abuse. Even if they don't mean it and you know they don't, it's hard to deal with someone who is screaming insults and maybe even physically attacking someone.
Secondly, autism doesn't cause social deficits, but rather social differences. Autistics tend to need more alone time and have an odd pattern of interacting. If those are dealt with well, an NT sibling can have plenty of good interactions with an autistic child.
In general, I think this article doesn't address the issue of how the family deals with the disability. I can certainly see how it would be hard to be the NT daughter of Alison Tepper-Singer (in the Autism Every Day video) and her kind are far more common in the autism community than other disability communities. I bet it's much easier to deal with a disabled sibling if you are told they have 'different genes, same value' (a slogan I saw on many advertisements by the Canadian Down Syndrome Society) than if you are told it's a living hell to have to deal with someone like your brother or sister. And it's not just the (very real) differences between autistic kids and Down Syndrome kids. I've seen it in families with children with rare chromosome anomalies. If the condition is associated with autism but the behaviors aren't recognized as autistic, they seem to be more accepting than if they know the condition is associated with autism. I think it's that the culture of the mainstream autism community is so vicious that if you buy into what they say, it makes it much harder to cope.
In terms of forming a concept of autism, I saw an excellent book called All Cats Have Asperger Syndrome. It describes Asperger Syndrome with pictures of cats on each page. For kids who are familiar with cats, that kind of book seems like it would be a great help. But it seems to me that if you simply explain to the kid why their sibling is acting oddly in numerous 'teachable moments', they could easily get a pretty good understanding of autism.

"In the car, they demanded that their mother make only right turns — left turns or driving in reverse would provoke screaming fits. “We were complete prisoners,” Jennifer says. “We couldn’t go anywhere.” She remembers one time, after the boys tore up the house yet again, that she just sat down on the living room floor and sobbed, with Tarah by her side."

This is an example of the problem. I can't think of anyone among the people I've known whose kids have chromosome anomalies with an unrecognized association with autism who described themselves as prisoners of their children. This seems to be something about the autism community. It almost makes me feel like I should avoid telling these parents what their child has in common with autistic kids, but I hope if I tell them the right way they'll find the better part of the autism community - the part that is dominated by autistics themselves, and some parents, especially autistics with autistic kids.

Planning for Support or Avoiding the Pain?

Quite awhile ago, I decided to write a post about the horrible Autism Every Day video. It was really upsetting me, but as long as I was watching and writing responses I barely noticed my feelings. Then we had to go, and I left it unfinished, planning to finish it shortly afterwards. As I posted soon after, though, I had a meltdown that night because of all the unhappiness I'd been pushing down.
This was in summertime. It's almost 2007 and the post I planned to finish at my next opportunity is not finished, and many other posts have been made. What happened? I decided to plan for emotional support. Thinking of that meant that every time I considered finishing that post, I'd anticipate how much it would upset me and put it off.
Recently, Amanda Baggs posted about a video by the Judge Rotenberg Center. I considered watching the video she discussed, but didn't have the time. Since then I've had time to recognize how much the JRC reminds me of my first school, only worse, and just how terrifying it is. They directly attack the ways I survived in my first school. I thought to myself 'they can't kill me' whenever I was heading for a big confrontation. I also knew I'd get sent home to understanding parents. The second is how that movie would trigger me.
Once, to my father's outrage, he was told they should treat me worse so I didn't want to get sent home. If I knew my parents would react to me describing how I'd hidden under a table to get away from my teachers and they'd dragged me out, hurting and terrifying me, by saying 'can you talk about something good about the school?' I have no idea how I'd survive. Running away, trying to kill parents/teachers, or pretending I can no longer see, hear or move come to mind. However, I might not be able to escape, and my dislike of hurting others means that killing someone is not something I'll do, and if I did get so desperate that I could bring myself from imagining killing someone to really killing someone, no doubt they'd be able to stop me. And as for the last, 'noncompliance' would be punished, and a punishment causing unbearable pain would be intolerable.
It's like acknowledging that something will hurt has given myself permission to avoid doing things that are important to me. I don't like this. We're home today, me and Mom, so I asked her if she could be there for me while I watch the rest of the Autism Every Day video. Mom told me she couldn't handle it today, but in a couple days she can.
I'm scared that I'll put it off again, that I won't be able to bring myself to do it. I'm worried that maybe Mom is really saying she doesn't care about me enough to put up with me needing support, and she'll put it off again (unreasonable, but try telling my emotions that). I really want to do this, but I'm scared.

Victim of Who?

Recently I was trying to post a response to a parent of an autistic child who said that despite all the bad stuff about the Autism Every Day video, she liked it. She compared it to feminist consciousness raising. In trying to write my response (which was lost due to computer problems) I kept trying to get at what really bothered me about that comparison, without being able to figure out what it was.
After the computer error had happened making me loose my response, and I'd had a meltdown exarcerbated by the fact that my brother had been pestering me to give him a turn on the computer, I realized what the basis of the problem was. Both Autism Every Day and feminist consciousness raising are about speaking out about how the people feel victimized. The important distinction is who they think are victimizing them.
The parents in Autism Every Day seem to think that they are victims of their children. But in reality, both they and their children are victims of society. It's like an abused child blaming her mother for not pleasing her father sexually and 'causing' him to abuse her, taking for granted that he has sexual 'needs' that must be fulfilled and he can't help himself.
I think I've written before about the problems of taking society for granted. If you assume that society's view is correct, and are being victimized by society, you end up either ignoring your victimization or blaming the wrong people/things. My mother told me some feminists had the idea that women needed to be liberated from pregnancy and childrearing. Thay hadn't challenged society's view of those things.