My Life Story

Awhile ago I posted about a discussion I had on a listserv, and alluded to a shift in how I perceived my own story as a result of presenting at the ARM conference. I said then that I should probably write a blog entry about it soon. Since the current Disability Blog Carnival topic is 'I Am' I thought I may as well do it now.
I'll start by telling my story.
I was one of those autistics who have no obvious delays in early childhood, and in fact usually seem gifted. I had normal to advanced milestones (either first words or first steps at 11 months, can't remember which), was happy and curious, and had intense interests (my first word was 'meowmie', meaning cat - it's my impression that babies whose first words aren't 'mama' or 'papa' often have intense interests) and a long attention span. I also slept through the night at only a few weeks old.
When I was 10 months old, my parents had my cousins (a 14 year old girl and her 11 year old brother) over for a visit for awhile, and while they were staying there, the girl told my parents that her father (my father's brother) was sexually abusing me. My parents told the authorities and were told not to take those kids home after the visit because they had custody now. So that's how my cousins came to live with us.
They were both very troubled kids. The boy would have rages and showed no remorse for his behavior, and lied and stole (once, he stole beer from the local store and was caught on videotape). The girl was manipulative and vindictive towards women and flirted with adult men, including my father. To give an example, she insisted on getting those gloves that you can pull the fingertips back to expose your hand - they were also very poorly insulated - and then claimed to her 'friends' that my parents refused to get her decent gloves. Obviously, both of them were hard to look after, and they made each other worse because of extreme sibling rivalry (apparently my uncle used to force them to abuse each other). Around 18 months or so, I became very quiet and withdrawn, although I'm not sure if I actually regressed. I did lose pre-walking skills when they first arrived.
My parents knew they had a lot of problems, but what they didn't realize was that both of them were sexually abusive. The older one ran away from home at 16 and my parents decided she was better off living on her own. The younger one, at the same age, sexually assaulted a classmate and she pressed charges. At that point, my parents realized he was a danger to me (I was also showing some behavior problems suggestive of abuse) so they sent him to another foster home. Shortly afterward, he confessed, and when the police interviewed me I revealed that both of them had abused me.
I actually don't remember any of this. With a few exceptions, all that I remember is from when I was at least 5 years old. I think I repressed those memories, although since J-Mac has a similar lack of early memory without any history of abuse it could be an autistic thing. Anyway, now we're getting to the part that I remember.
I had a good Kindergarten teacher, although I remember her pulling me out from underneath tables and such when I had a meltdown (I think it's a bad idea to do that - just wait for them to calm down and come out on their own). My grade 1 teacher, however, was the worst teacher I ever had. If you search for 'school trauma' on my blog you'll find a lot of stuff about her and the other teachers in that school, so I won't go into it very much here. One thing I will mention is that my teachers wanted me diagnosed with ADD (it was called ADD rather than ADHD back then) and given Ritalin. My parents kept getting me tested at their urging and every expert said I certainly did not meet criteria for ADD. As my mother said in her conference presentation 'we talked abuse and giftedness, they talked ADD and inherent pathology'. My parents also labeled me a dreamer, based on the book Strong-Willed Child or Dreamer?, but my teachers refused to read it.
My parents pulled me from that school halfway through grade 4 (my school had split-grade classes, and even grades were worse than odd grades for me because I couldn't listen in as the older kids were taught). In grade 5, I started in another school. Many autistics have observed that bullying tends to get really bad around that age range - and being a new student made it worse. My teacher there was very nice, but unfortunately, she was apparently too nice to punish bullies. I used to think of her really positively, but now I'm angry that she didn't do more to defend me from them. I keep thinking of the time that the vice principal was our substitute teacher - that day, the bullying was restricted to outside of class. I didn't like the vice principal, however, because when I had meltdowns he was often the one punishing me. It was at that school that I got sex education, which assumed everyone would be straight and resulted in me misainterpreting nonsexual liking for boys as crushes, and also a 'disability awareness' thing that sparked a brief obsession with disabilities resulting in me learning fingerspelling and the braille alphabet and wandering around with my eyes closed a lot.
I stayed at that school for grade 6 and a little bit of grade 7, then transferred to another school with an 'academically talented' program. My parents assumed that the academically talented program was for gifted kids - that's what they were told - but it was actually for teacher-pleasing hard workers with high-average intelligence. A highly creative, autistic, gifted kid who hated school really didn't fit in. The bullying was even worse there, and partway through grade 7 I was kicked out for 'attacking a teacher' (which apparently meant struggling when I was restrained to keep me from running away). While I was there, however, the principal suggested Asperger Syndrome as a diagnosis. My parents described the condition to me, without saying the name of it, and I said 'there's no such condition. If there was, I'd have it!' They didn't pursue that diagnosis any further, apparently because they felt it pathologized things they liked about me, like nonconformism and intense interests.
After I was kicked out, I started being homeschooled. Without doing any research on homeschooling, my parents figured out the method that fit me best, which I've since discovered is called unschooling. Basically, the child directs their own learning. In my case, I've always been an excellent researcher, so I just needed free time to research whatever I chose.
That's how I discovered autism. My mother has double majors in law and history, and her specialism is probably best summed up as 'feminist legal history'. I was obsessively interested in drugs and drug abuse, and my mother did a piece on how drug-abusing mothers and drug-exposed children are portrayed, focusing on a woman referred to as Ms G (a couple of articles about her here and here). She mentioned FAS in her piece, so I decided to research it. As I was researching FAS, I came across an 'online diary' news column by a mother of an autistic boy, and decided to look for more stuff like that. I found Temple Grandin's stuff and focused my interest on stuff written by autistic people, and found the neurodiversity movement. Right around that time, I started recognizing my own features in what I was reading, finding that I identified a lot with autistics, and gradually shifted in my view of myself as having trauma-related 'pseudo-autism', then being on the broader autistic phenotype, and lastly being possibly/probably autistic. I was at this last stage when my mother got a job in another town and we split into two households for awhile, and I went to grade 10 at a regular high school.
Being in school again brought up a pile of emotions, and I started having worse and more frequent flashbacks than I'd had before. It was that year that I thought up the concept of 'school trauma' to describe how I'd been affected by school, because I realized my reaction to bossy teachers and possible bullies (luckily, I wasn't bullied in grade 10) was exactly the same sort of thing as my reaction to revealing outfits, flirting, and unexpected touch. I had the same kind of terror of being called names or given an unreasonable school-type order as of someone trying to get me to do something sexual. My parents set me up with counseling, and during the intake examination (during which they asked a series of question which I correctly identified as the DSM-IV criteria for depression) I happened to mention that I thought I might be autistic. The leading psychologist there promptly told me I had PDD NOS.
The next year my mother's contract wasn't renewed, we went back home and I went back to homeschooling. I became even more of an activist and started getting involved in real-life activism as well as more internet activism. And then my mother and I did a conference presentation on the 'war on autism' at the Association for Research on Mothering conference, and at the end, she told my story. Afterwards, a woman came up to us and said that my life story was very similar to her own autistic son. Asperger Syndrome had been suggested as a diagnosis for him, as well, but she didn't think there was anything wrong with him, so she didn't get him evaluated. Instead, she just raised him to accept himself. When he was in his teens, he also discovered autism and self-diagnosed.
This is what made my viewpoint shift. There is a category of parents who don't seek out diagnosis for their mildly autistic kids, nor do they have the struggles assumed to be typical when a child is undiagnosed autistic. They just accept their kids. And their kids grow up with problems in school and with other kids, but always knowing that their parents love them as they are, and never fully internalizing the 'different = bad' ideology. Then they find out about autism and the neurodiversity movement, and self-identify as autistic. Their first view of themselves-as-autistics is a positive self-identification, similar to a gay person coming out, rather than a negative-other-identification.
I think kids, while growing up, should learn about all sorts of neurologies such as autism, not as disorders, but just as part of diversity. Our society should be flexible enough that an undiagnosed autistic can fit in and be accomodated just fine. And autism and other neurodivergences should be self-identifications, or things parents identify their children with to help understand them - like my parents did with the label 'dreamer'. We should take these differences out of the control of psychologists as 'gatekeepers' to our community.

Finding Agreement

There is a listserv I've joined recently, about girls/women on the autistic spectrum, called Autism_in_Girls. It's got a mix of parents of autistic girls, autistic women and various other people.
Anyway, I started out commenting on what people said that triggered posts from me, just as usual. Some were about various features of autism, such as one person wanting to know about anxiety in autistic girls, but when some people posted about biomedical treatments for autism, I commented on that as well. I wasn't as careful as I sometimes am about phrasing my comments diplomatically, and this list has a number of people who support biomedical treatment of autism, so an argument broke out. When someone asked whether I'd come to this list in order to upset people, I felt terrified. It was like I was in a village hearing someone yell "we'll drive the witch out of town". I felt like I was about to be cast out.
So far in this story, it's just what I've had happen on many lists. I say what I think and feel, and everyone likes my unique contribution, then I say 'the unsayable' and people suddenly turn against me. Usually what happens next is that I fight for awhile, and then leave the group, feeling beaten down emotionally. But that's not what happened on this list.
I argued awhile, trying to clarify that I hadn't said any of them were bad parents and the various other things people had read into what I'd said, trying to explain what I really meant and why it was important, and then something really unusual happened. I connected with one of my fiercest opponents.
To summarize what happened, the other person (a mother of an autistic girl) said she'd learn much more from me telling my story than posting inflammatory comments. I replied with a reference to the definition of self-narrating zoo exhibit, saying I didn't want to be one. She replied to that by saying she didn't want me to be a self-narrating zoo exhibit - she wanted me to say what was meaningful and why, how my story shaped my view of autism, what made me say the things I said. She wanted to understand me, in short.
And in reply to that, I took a risk and gave her exactly what she'd asked for. I told my story (in two segments). For those of you who don't know, I was sexually abused by my cousins, attended a really bad school from K-4, attended a somewhat better school with a bullying problem from 5-6, was homeschooled from 7-9, read about neurodiversity and self-diagnosed as autistic at 14 or so, attended a high school for grade 10, was diagnosed autistic at 15, and have been homeschooled for grades 11-12. My parents never thought there was anything 'wrong' with me and refused to have me diagnosed with anything other than PTSD, not because they didn't realize I was different, but because they saw no problem with how I was. This is a brief summary, I told my story in much more detail on this list.
And the risk was worth it. I felt very exposed, saying so much about myself to people who were hostile to me, but after that they weren't hostile any more. They still don't agree with me on many things, but I think they're coming to understand my viewpoint. We've made peace, though I don't know how to go on from here to regular conversation again. I'm still trying to figure out what happened. I'd love to know how this can happen in other settings, but I don't understand it, or how much of it was under my control.
On thinking about it, though, I have some theories about things that may have made this different from other similar encounters.
Firstly, I wasn't the only one. There are several autistic women on this list, one of whom was quite vocal in supporting me (and one who was confused by much of it and kept asking people to clarify, which we did as much as possible). I've read in social psychology textbooks that one person expressing a minority viewpoint in a group has little impact on other group members, but if even one other person expresses agreement, the minority is much more powerful. So that might be part of it - though I've seen times in which multiple autistic neurodiversity advocates argued with a majority of people looking to cure autism and eventually each of them were successfully driven away, so this can't be all that made a difference.
Secondly, a major person on the other side of the argument, though she attacked me personally early on in the argument, used quite a lot of logical discussion and trying to clarify her understanding of my viewpoint as well. Not only did this make it much easier for her and I to come to an agreement in itself, but it also encouraged me to argue better myself. I admit that I did some personal attacks, though mainly towards people group members supported rather than group members themselves (eg, I said 'reputable DAN doctor' was an oxymoron), but in reaction to her model, I stopped doing that.
Lastly, I think I was different. Some of this took place during the lead-up to the ARM conference, when I was getting a really heavy dose of anti-autism stuff while simultaneously having a lot of personal support, and the bulk of it took place right afterwards, when I'd had a big shift in my viewpoint of parents of autistics as a result of my mother and the numerous activist mothers I met at the conference, as well as a shift in understanding myself and my own story (which I should probably blog about soon). That conference made me much more confident as well, and therefore less prone to defensiveness in reaction to that argument. I was able to confidently say 'no' to a request for proof of my diagnosis, and rather than feeling like my story was too atypical to teach anyone and would just show I had no right to talk about autism, I felt that my story illustrated something useful and significant.

Creating Panic

I've been meaning to write this since we went to the ARM conference, but I've been putting it off thinking I'd link to our conference presentation with this. Then my mother pointed out that our conference presentation has some stuff about me, such as pictures, that I'd rather not have people viewing over the Internet. So, if I can think of a way to edit it so it doesn't reveal stuff I don't want revealed, I'll look into to putting it up, but in the meantime and in case I don't put it up, here's the post I was thinking of.
I've known for a long time that many parents of autistic kids are desperately worried about curing their children. It's hard to do much in autistic self-advocacy without seeing that. And I knew the 'experts' were reflecting this desperation by peddling miracle cures. I just sort of assumed that parents were so desperate because of societal intolerance for difference, and that the experts were simply responding to that. This is the idea encouraged by a lot of criticisms of quacks 'taking advantage of people's desperation', an idea fairly accurate in the area of cancer treatment that has also been applied to autism treatment.
But my mother's conference presentation argued something different. She looked at the stuff that I found, and suggested that the experts were in fact creating this desperation, not just responding to it. When they say unfounded claims like '90% of untreated autistics are institutionalized' (popularly tossed around by ABA proponents, with no reference ever being given) or 'you can't wait nine months for an assessment, you can't even wait two months' (which was said by Dr Greenspan in the book Could it Be Autism?), they aren't just getting it wrong, with no motive for it. They are, in fact, creating demand for their product, just like advertisers do.
This doesn't mean society's attitudes towards difference aren't part of it. They are. The very reason these dire threats carry so much sting is because people are scared of disability. And they also feed into this, in that such threats make people even more scared, but I know that fear of disability came first. In fact, in the 1800s, the 'experts' played a much more positive role, counseling against things like keeping your disabled son locked in the attic and saying 'we can teach them something' (see On Some of the Mental Affections of Childhood and Youth, by John Langdon Down). That worked to bring them into their role of treating and educating developmentally disabled people. Now they're doing something else to maintain and build that role.
And while I don't know what the 'experts' are thinking when they do this, I think many of them are well-meaning. This might, in fact, be unintentional, be them simply repeating what they've been taught from outdated case reports of institutionalized and neglected or just simply unusually severe cases, and comparing those reports with the children they've seen with treatment. But in some cases, it could actually be intentional.
What made me realize this was my father's obsession with Westerns (I'm not sure why, he always criticizes them as poorly written, but he likes to read them), because he happened to mention that many doctors in those stories would exaggerate the severity of their patients' conditions so that when what they predicted didn't come true, their treatment would get the credit. And when a child who was described as echolalic and noncommunicative (as those terms are used, not always accurately) at 5 years old develops communicative speech and isn't institutionalized, if parents knew that Leo Kanner's follow-ups back when psychoanalytic treatment was in vogue found that outcome to be relatively common for kids who were echolalic at 5, they wouldn't be as grateful to the ABA therapists as they'd be if they'd been told their child would still be echolalic and noncommunicative as an adult.
This also explains the tendency for parents to actually view their children more negatively after diagnosis. Although parents who misinterpreted troublesome autistic behavior such as literalism or sensory overload as defiance or manipulation often view their child more positively after they are diagnosed, many parents actually viewed many of their children's differences fairly well pre-diagnosis. One parent, in a book I read, talked about how she though her kid was very focused, organized and intelligent - after diagnosis, she interpreted the same behaviors as indicating overfocused attention, repetitive play and splinter skills. It may be partly an accurate shift in expectations, since a non-autistic gifted child typically does better than an autistic child, but partly it's that such behaviors are overtly recategorized and relabeled, even when both labels are equally accurate or the pre-diagnosis one was more so. Cute little quirks suddenly become signs of a disability (another example, in Her Name is Montel, is when Montel's father finds out her odd catlike cry is a sign of Cri-du-Chat Syndrome).
Here are what I see as the major components of how the 'experts' create panic and sell their therapies:

• unrealistically negative prognosis - such as the 90% institutionalized quote. This can occur without any of the other features in doctors who aren't selling any treatment, but often goes along with promises of miracle treatments to change that prognosis.
• reframing neutral or positive traits as negative - as seen above in the shift from seeing a long attention span to seeing overfocusing.
• creating urgency - 'you can't even wait two months'. This means that parents do not have a chance to think through what they are doing before they do it.
• rosy promises of the treatment - such as, in ABA, the repetition of Lovaas's 47% cured statistic without explaining how Lovaas defined cure, how his treatment differed from modern ABA and the lack of independent replication or evaluation of his 'cured' cases.
• a theory that is never studied, changes when challenged, or both - this is also seen in ABA with the repetition of the neuroplasticity theory (ABA changes the brains of children so dramatically as to erase or reduce autism) in the absence of any study, or in the ever-changing ways the anti-vaccination movement finds to blame vaccines for autism.

(Can you think of any others? I'm sure I'm missing some.)
This shift in my viewpoint makes me more sympathetic to mothers, and also highlights the importance of critical analysis from multiple perspectives. I naturally tend to loook at autism from the perspective of an autistic person, while my mother sees it from the perspective of a parent of an autistic kid. Both of those perspectives, combined with critical analysis of the messages society is sending, give useful and enlightening interpretations that together can give us a more complete picture of what is going on.

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?"
http://autism.about.com/b/2008/09/16/an-autism-mom-says-god-ruined-my-child.htm

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.

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?

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.

'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?

Letter to the Autism Society of Canada

I just sent this e-mail to the executive director for the Autism Society of Canada.

"I am a 19 year old diagnosed with PDD NOS. I live in Saskatchewan.
Recently I found the National Autistic Society (UK) website and I cried. Why is the Autism Society of Canada so different from them? Last year, they launched a campaign called I Exist, about the issues of autistic adults. They really care about us, and are taking measures to help us. While the Autism Society of Canada mostly only mentions us to say how our lives are doomed because we haven't had early ABA. Your organization says 90% of autistic adults are institutionalized - if that's true, why aren't you helping us? Why are you not trying to get better lives for us, the support we need to live in our homes? Why is it that you're only helping children?
Even if you only care about your children, remember that the best estimates of effectiveness of ABA is 47% cured. That still leaves 53% of autistics who will need some kind of assistance throughout our lives. What are you doing to make sure the kids who aren't cured by ABA still get to have good lives? If you help us older autistics now, those kids won't have to struggle like we do.
I'm 19 and even though I'm very intelligent and can write well, I can't live independently. I have serious organizational problems - my bedroom, which I was solely responsible for keeping clean, got so messy I had to sleep on the couch and huge bugs were living in my room. I tried hard to keep it clean, but I just couldn't. On my own, my entire home would get like that. There are adult autistics who have had their homes condemned, and ended up homeless because they can't keep things clean. And no one would help them. My parents are willing to look after me, but what will happen when they die?"

The Missing Voice

There's this one style of writing that really bothers me. It's when someone writes 'nonfiction' from the perspective of someone else who can't describe their own experience - usually a disabled child, although people do this with pets as well. An example is available here.
It's not that people do this both with pets and disabled people that bothers me. I think very often the offense at being 'treated like an animal' is about things that are problematic when done to animals, as well. And that's true in this case, although I'll be discussing why it's problematic to do this to disabled people.
Although one problem is that it can be hard to tell who actually wrote it, that's not the biggest problem either. Often it's obvious - frequent references to 'mommy thought' with too much detail to be anyone other than her, statements like 'I can't speak or write', etc. Other times, it isn't. One website I found, I actually couldn't tell who had written it - the disabled man himself or one of his parents.
In the Faces of Autism conference I went to, they asked people to put up their hands when they named certain groups of people attending. They listed parents of autistic children, teachers, therapists, etc. At the end, they said 'did we miss any group?' I and one other person put up our hands. They'd missed two categories of people - politicians and autistic people. (There's a funny Monty Python skit about this, too. You can see it here*.)
I think these are related problems. People tend to lump disabled people and their family into one group, and act as if their interests are the same. This is especially true with disabilities that are usually diagnosed in childhood and that affect communication. And lumping those two groups together almost always means only listening to parents.
Now, parents of disabled children need to have a voice, and they need to be heard. But that's not a big problem. It's not that hard to get people to listen to them. But so often, people don't even realize someone's voice is missing. They don't even realize that they don't know what the disabled people themselves actually want, how they actually view their own lives.
Back to the 'nonfiction' written from someone else's perspective. The big problem is that they don't seem to realize it's actually fiction. You can't actually write from someone else's perspective, and really get it right. I'd find nothing wrong with it if it came with a clear message that this was written by someone else trying to imagine what it's like from their point of view. I want people to recognize what that kind of writing really is - fiction. It's fiction just like a story from the perspective of a famous person (like the Royal Diaries series) is fiction. Technically, you might call it 'creative nonfiction', which is really a fictionalized account of real events. But it's not equivalent to telling the story from your own perspective or taking dictation.
Another concern I have is that people only tend to do this with those who can't tell you their own story. Imagine writing your husband's life from his perspective - not showing him what you wrote or asking him what it was like for him, just writing it. If you wouldn't be willing to do that, then why are you willing to do the same with your child's life?
This also ties in with the saying to parents: 'you are the expert on your child.' Well, you aren't the expert on your child. You're one of the experts on your child. But the one who really knows the most about your child is not you, but your child themselves. Even if you can't talk to them and find out what they know about themselves, never forget that they do know themselves in a way no one else can. Just because you don't know their perspective doesn't mean they don't have one, or that their perspective brings no new information. And your voice may speak for your child out of necessity, but never forget the voice that is missing.

* Sorry, no subtitles.

Tolerating Suffering

I found a manga called With the Light: Raising an Autistic Child. It's a great story, I highly recommend it. But in this entry, I'll talk about one of my least favorite parts of it.
The autistic boy in the story, Hikaru, entered school after a year of integrated preschool. He found it really hard to adjust to school. Although he adjusted after awhile, for months he was crying much of the time. People would comment on it all the time.
Another example is the following, gotten from here:

"Anna stopped smiling and laughing for the entire four years she was on Vigabatrin, but started smiling again within a week after we discontinued it. We eliminated it because of our concerns about possible vision loss"

Hikaru's mother, Sachiko, was portrayed as a very caring and understanding mother of her autistic son. I don't know much about Anna's father, but I assume he cares deeply about his daughter as well. But there seems to be a much greater tolerance for suffering of developmentally disabled children than other children. My mother even shows this. When I cry or self-injure, she doesn't get as concerned as someone who doesn't know me would get. (By the way, in case I haven't stressed this enough, these are good parents. My mother and Sachiko and presumably Anna's father are all good parents. That's part of the problem - even good people act this way.)
I'm not sure why there is this tolerance for suffering. Considering the kind of people who act this way, it's obviously not hate or uncaring. And it's unlikely to be that these people truly don't think disabled people feel suffering, or feel it only mildly. It must be something else.
One possibility is that many developmentally disabled people are atypical in emotional reactions to events and in how we show our emotions. I have less sympathy for people who are upset by something if it's something that I've never been bothered by (for example, a claustrophobic in a small space). I also have less sympathy for unhappy people who are harder for me to read emotionally. Not that I don't think their feelings matter, in either case. I just don't feel as strong an emotion reaction to their suffering. And this is when I do realize they're unhappy.
The solution to this is simply to recognize it and remind yourself that just because you don't feel that way or show it that way doesn't mean the person's suffering isn't as strong as yours, and to consciously try to react appropriately.
Another possible explanation is not knowing how to help. As a result, the person withdraws and shows less obvious reaction to the other person's distress. This is also cited often as a reason that bystanders don't intervene in bullying - they don't know how to. The best solution for this is education - learning how to help. If you're a parent having this kind of problem with your child, I have several bits of advice. Firstly, pay close attention to what your child likes and dislikes, and especially how they are comforted. If they rock when upset, for example, they might find you rocking them or sitting in a rocking chair comforting. Secondly, talk to other people and research stuff to find out how others deal with children like yours being upset. Lastly, try things out that you think might work, being careful to stop if it's making things worse.
Another possibility is unconscious prejudice. Although you may overtly disagree with a position, and honestly think you disagree with that position, you might on some level agree with it. This shows up in your emotional reactions and in things you say and do without thinking much about it. It may be that some people deep down don't believe that developmentally disabled people are as capable of suffering as others are, even though their conscious beliefs are quite different. The way to deal with unconscious prejudice is to recognize it in yourself. Once you've recognized it, teach yourself different patterns of reactions by recognizing a prejudice-cued reaction and consciously correcting it, and by trying out different behavior patterns. One of the biggest impediments to dealing with your own prejudice is a strong investment in viewing yourself as a 'good person'.
A third possibility is that very often developmentally disabled people are upset more often and more severely than non-disabled people. If you know someone who often cries, you are likely to get used to them crying, and react less than you would to someone crying who rarely cries. This is appropriate if they cry more often because they show their emotions more strongly, so that mild sadness results in them crying whereas another equally sad person just gets quieter.
But this usually isn't the reason developmentally disabled people, particularly autistic people, act upset more often. Instead, it's that we're under more stress in our daily lives, exposed to more upsetting, tiring, or overloading things on a day-to-day basis than most people are - simply because most people are fine with those things and our society is built around them. Add in the higher rate of trauma and abuse, meaning that developmentally disabled people are more likely to have flashbacks and experience extreme stress.
These sources of extra stress must be dealt with. It's not acceptable for disabled people to have so much more to deal with than non-disabled people. But that's going to take a lot of work, over a long period of time. It's going to take changing the world and discovering things about disabled people that are not currently known. Any closer you can get to that goal is a good thing.
In addition, people need to recognize this. They need to realize that this person they are with is going through much more every day than most people do. Not to pity them, but to take that into account - to give them more support, to avoid adding unnecessary further stress on them, and so on. And not just fleeting reminders - those only change things for a brief time, if at all.
Our suffering shouldn't be used as justification for killing us, subjecting us to harmful 'treatments', preventing the birth of people like us, or many other things it's used as justification for, but neither should it be overlooked or treated with less concern than the suffering of other people. Our suffering is not to be expected and accepted.

Your Octagon Daughter

You see me staring at your daughter, your octagon daughter, and glare at me. You think I'm looking out of pity, disgust, or morbid curiosity, the way you'd stare at a car crash. Maybe I'm thinking 'poor little thing' or maybe 'why have people like that out in public?' That's what most squares think when they stare at your daughter. That's what you expect them to think.
But my look is not of pity or disgust, but loneliness mixed with joy. I sit there, fighting between my loneliness and my fear of being judged by people who, like me, have been treated harshly by society. Because you can't see it, but actually I'm not a square. I'm a triangle.
And even though triangles and octagons are more different than triangles and squares or octagons and squares, in some way we're alike, your daughter and I. Because when squares are everywhere, and square is treated as the proper way to be, anyone who isn't a square has something in common. We're all considered broken, we're all the exceptions to the rule.
And even you, in your glare, are confirming square rule. Anyone who looks to be a square is assumed to be one. I doubt you even realized I might also be different. After all, my right-angle corner looks like it could be a square's corner. And that's what everyone sees. They expect to see a square, and a square is what they see. Your daughter has no right angles for people to be confused by, but I do.
So I sit, and watch your daughter. And then you glare at me, with that protective glare, and not knowing how to explain, I simply walk away. But I wish there could have been more. I was glad to see that not everyone there were squares, and I wish you could've seen that too. Above all, I wish you hadn't been trained to expect hurtful square looks. Just as I wish I hadn't been trained to expect hurtful square replies.

Some videos I found

I was e-mailed a link to a news article about the movie Including Samuel. After watching that, I decided to look at what they had about autism. Here's some of what I found.

http://abcnews.go.com/video/playerIndex?id=4875053
An Olympic weightlifter who has an autistic son. Favorite quote:

"I remember going into my Bishop and saying 'this is not what I signed up for.' And I was in tears, I was obviously struggling, and he looked at me with a smile, and his infinite wisdom, and said: 'Melanie, this is exactly what you signed up for.' ... I stopped worrying about all the things he wasn't going to do and all the things that he wouldn't become, and I started enjoying who he was. I'm grateful that I finally figured out how to truly enjoy the journey."

http://abcnews.go.com/video/playerIndex?id=5055588
A bunch of siblings of autistic kids. One boy started pretending to be autistic at 4 so he could get more attention - he refused to speak to speak for 2 weeks. Favorite quotes:

"I would just wish that he was happy. I wouldn't necessarily change the disability part, I just - I just wish he would, um, he wouldn't, like, be sad."

"It's harder to understand. It's harder to put yourself in their shoes, so, it - you really don't know. (I have the feeling that you try to put yourself in his shoes.) Oh, yeah, and I do, very often."

http://abcnews.go.com/video/playerIndex?id=5055644
About bullying of autistics. They quote one statistic - 90% of Asperger Syndrome kids are bullied. They also have a cute picture of an autistic kid dressed up as a streetlight. Here's one quote:

"There were a few kids that didn't like me. (And they were calling you names?) Yeah. (Were they t - were they hurting you, physically?) No, they just did the regular stuff. (Like?) Gestures, or calling me names. (What did you do - did you say anything?) No. I didn't. (Just took it quietly?) Yep. (Just hurt inside?) Yep. I mean, after that, my life would never be the same."

http://abcnews.go.com/video/playerIndex?id=4491231
About the movie Autism: The Musical. Favorite quote:

"(What do you think the kids get out of being involved in this kind of production? What do you think they learned?) I think that they learned self-confidence. I mean, how many places do these kids go, where somebody's not trying to make them be different than who they are? Um, this is was place where they were accepted for exactly who they were, and I think it really boosted their self-confidence."

http://abcnews.go.com/video/playerIndex?id=5036816
About the Autistic Self-Advocacy Network and the neurodiversity movement. Favorite quote (in response to an 'expert' saying we need a cure so LFAs can function as well as HFAs):

"(And so we asked Kristina Chew, the mother of Charlie, whose autism is severe.) (If you could take the autism away from Charlie, would you?) I wouldn't choose that, no. We really try to understand him on his own terms. Acceptance, to me, is the beginning of hope."

PS: Kristina Chew has a blog, Autism Vox.

'Take It One Day At A Time'

I so often hear parents of disabled kids advised to 'take it one day at a time'. Don't worry about the future, only deal with today.
This is generally in response to parents despairing and panicking about their child's future. If you're too worried about their future to function or look after your child today, that's not a good thing. But as a long-term pattern, 'taking it one day at a time' is not good either.
If you take it one day at a time, you never get to prepare. Each new issue comes completely unexpectedly. When it's time for your child to go to school, you have no plan to help them fit in that setting. When they move from elementary to high school, or some transition like that, you haven't prepared them for it. When they graduate, you have no plan for after graduation. When you die, you leave behind no guidelines or safeguards for their needs.
If you are the parent of a disabled child, you can't just take it one day at a time. You need to think ahead. For example, one OT talked about starting to work on skills needed for driving with a 14 year old learning disabled teen, because in two years, he'd be wanting to get his license. You should do similar things. Don't panic, just think 'what can I do now to make this upcoming issue easier for my child?'
For example, you could check out potential schools for your 3-4 year old to go to Kindergarten in a few years. Talk to the teachers, watch the classes in progress, take your child for a visit if you're strongly considering it. And you can work with your child, to get them ready. Explain to them what school is about and what it'll be like for them (even if they have little verbal skills, they might understand it). Work with them on specific skills for school, especially things like not aggressing towards other kids, dealing with being away from you, etc. If they really aren't ready to learn what you're teaching, don't push it, but just showing them it may help them figure it out later. You might even want to enroll them in preschool or some other day program, especially if it has a reduced schedule compared with Kindergarten so it's less of an adjustment.
If you realize there are systemic barriers in place that will adversely affect your child, you can work on those before they actually get in your child's way. For example, if your child uses a wheelchair, and the school you're considering is not completely accessible, you can start lobbying and fundraising and such before your child even enters the school. I know one parent who started trying to get her child's school playground wheelchair accessible when the girl was in her early years in that school. A few years later, she was in grade 5, no longer into playing on playground equipment, and that playground was still not accessible. Had her mother started earlier, maybe she could've gotten to play in her school playground.
Taking it one day at a time helps dampen your worries, but you can't prepare for things. If you plan ahead, your road will be easier.

Late Mother's Day Post

I meant to post this right after mother's day, but other stuff intruded. Anyway, here's a poem I gave my mother on her mother's day card:

"So many parents long for a child different from their own.
You love me as I am.
So many parents hope that if they pretend evil does not happen, it won’t affect their child.
You stand by me in my pain.
So many parents try to change their child to fit the system.
You try to change the system.
So many parents listen to what experts say about their children.
You listen to me about myself.
So many parents love their child, but don’t really like them.
You like and love me.
So many parents think they are the biggest experts on their child.
You know that only I can define myself."

What Was She Thinking?

Many people lately have been talking about Hannah Poling, an autistic girl with a mitochondrial disorder whose parents have received compensation because she regressed after vaccination at 19 months. I was thinking of blogging about how mitochondrial disorders are extremely rare, how the vaccinations she received were much better than getting one of the illnesses they were intended to prevent, and how simple measures such as reducing fever, ensuring that the child eats plenty even when sick, and spacing out vaccines (she got 9 at the same time) could prevent other children with mitochondrial disorders reacting badly to vaccines.
But after watching the videos, I've thought of something else. I watched this 9 year old girl sitting there, between her parents, as they talked about the vaccines she got and how they affected her. I heard her parent describe all the ABA treatment she got. I saw the pained look on her mother's face, the 'protective mother of a hurt child' body language she gave out. I saw a girl who seemed a lot like me and many children I know. I saw a girl who talked with her mother about the picture she was drawing, was bothered by some kind of microphone or something that she was wearing on CNN, and had movement quirks typical of autistics, more prominent but similar to my own movement quirks.
My big question is: What was she thinking? How did she feel? What was it like for her, to hear her parents describe her 'descent' into autism, to be a silent observer to her parents complaining about her behavior and expressing their pain?
And then I think about the broader context. She received ABA, so I think about her sitting at the table, putting up with (or protesting) someone giving her an unending series of commands. She lives with these parents every day, so I think about what that means. She probably hears them explain her problems to doctors and teachers and maybe even strangers. And how do they react when she acts strange? If she expresses an unusual desire, like the boy who wanted to dress up as a lamppost for Halloween? They're clearly quite loving, especially her mother, but they've spoken publicly about her being damaged, with a lot of pain evident. Do they express this in their everyday lives, or are they more like the mother of an autistic boy who told my father 'this is as good as it gets' and apologised for him not being a typical birthday guest, but was really only putting up a defense because she didn't realise we were so accepting?
So, my blog entry, rather than being a bunch of facts, is really more a bunch of questions, about the person most centrally involved in this case, but whose viewpoint has been considered the least. What is it like to be Hannah Poling? What was she thinking while CNN videotaped her?

The Moorchild

When I posted an entry about Delia Sherman's book Changeling, someone commented about the book Moorchild by Eloise McGraw. I now have that book. I have a few concerns about it.
Firstly, as in so many other books, the 'happy ending' consists of the parents getting their own child back. In Selma Lagerlof's story, the troll baby goes back to his mother. In Moorchild, Saaski/Moql ends up wandering with Tam, the orphan boy she befriends. Though both are treated with kindness by their human mothers, their mothers clearly would rather have a proper human child.
The only one who shows any sign of preferring the changeling to their own child is Yanno, who is sad that Lekka/Saaski (the stolen child) is terrified of bees, while Saaski/Moql helped him with his beekeeping. In Delia Sherman's book, instead, both Neef (the stolen child) and Changeling go back to their adoptive families in the end. That's the happy ending. Changeling clearly belongs with the humans, despite being a fairy in the form of a human, and Neef wouldn't want to go back there - it's not her home anymore. You never meet Changeling's parents, so you don't know what they want, but they've clearly been decent parents to Changeling, and she loves them.
Another problem, and this is present in both Changeling and Moorchild, is that the children fit in too well. They're only odd. In all the stories of changelings older than infant, if they described the child's abilities, they usually couldn't talk (except when tricked into revealing their true age) and some couldn't walk. They were all severely disabled, 'useless eaters'. But both Changeling and Saaski/Moql are strange rather than obviously disabled. Though Changeling clearly was considered disabled, she's in the category of children who have only recently been considered disabled, not those who were always viewed that way.
Saaski/Moql also should have been more disabled among the fairies, most likely. Apart from being unable to shapeshift or disappear, she seems to have normal abilities for a Folk child. She fits in among them even more than among the humans, until they reject her for what seems not to be much of a reason (after all, she could easily have been accomodated, especially since she was perfectly capable of making herself look the color of moss as she hugged a tree and could have hidden that way and gone out only at night when the risk of capture is less). She is more agile than most humans, but again, she's no less agile than most Folk.
A last comment about the stupid teacherly 'Alladin Reading Group Guide' questions at the end of the book. At one point, they state:

"The Moorchild is dedicated to 'all children who have ever felt different.' Is this another way of saying that the book is dedicated to all children? Do you think every child - or adult - has felt different at some point in their lives?"

I hate this kind of normalization of the experience of being different. Maybe many kids feel different on some occasion, but very few kids, like Saaski/Moql and myself, have felt different virtually every time they're with a group of children. It's totally different from occasional concerns about not fitting in. Instead, you know that you never fit in, you never belong, or at least so rarely it feels like never. It becomes a part of how you see yourself - not within any group but always an outsider. It's like the difference psychologists draw between state and trait. State anxiety means you are simply anxious at the time. Trait anxious means you're an anxious person. Though you may not always be anxious, you are anxious much of your time. Similarly, the feeling of not belonging can be a state or a trait, and it's very different when it's a trait than when it's merely a state.

PS: Here's my favorite write-up of the changeling myth.

Nearest book

David Hingsburger was tagged for something awhile back. You take the nearest book, go to page 123, and type up three sentences. I'm not sure, from the instructions, if the sentences are meant to be sentences 5, 6 and 7 or 6, 7 and 8. Anyway, he said people could tag themselves if they wished, rather than him tagging people. So I've tagged myself.
Nearest book is the abc of CHILD CARE, by Allan Fromme, Ph.D. It was first published in 1960, but my copy is the 4th edition, published in 1975. Since I'm not sure which 3 sentences to quote, as described above, I'll quote 4 instead.

"b. If we are fortunate enough to have our own outdoor play area for our child, it is worth equipping it in such a way as to attract other children. Although this may sound extravagant, it is economical in the long run to have a sand box big enough for several children, with enough sand toys for all. One outdoor swing is never as effective as two or three. A place to play, indoors or out, where children are not constantly nagged about the mess or noise they are making is in itself attractive enough for children to want to return to of their own accord." (In a list of suggestions on improving your child's friendships.)

Now, that's not one of the really interesting parts of the book, so I'll quote a few of the more interesting (accurate or not) parts:

"There is no such thing as an aggressive child who also feels loved. Children who are habitually and openly overaggressive are the very ones who baffle their parents the most by their extravagant if infrequent demonstrations of thoughfulness, love, affection, and begging for forgiveness. ... Superficially, of course, we assume that we all love our children and that therefore none of them should be aggressive. No doubt we do love them, but it is equally true that we don't always put it in evidence sufficiently clearly for our children to feel our love. A child, for example, doesn't see our love when we scrub the dirt off from behind his ears. It is equally true, too, that in addition to the love we have for our children, we frequently feel annoyed, irritated, offended, impatient, and even desperate about them. Without realizing it, we sometimes express these feelings very much more dramatically and clearly than we do the more tender sentiments of love."

There are aggressive kids who act that way for reasons other than feeling unloved. Although many of those kids end up feeling unloved, it's simply because many people don't act loving towards an aggressive child, rather than because feeling unloved makes them aggressive. Apart from that, this statement is very true. Many aggressive kids act that way because they feel unloved, and being loved doesn't necessarily equal feeling loved. With autistic kids, especially, they are more frequently corrected and redirected. They also hear parents describing them as having a problem that may have stolen their child, be trapping their child, be an enemy that must be fought, or other forms of nasty imagery about autism. Those statements might be less harmful if the child's perception matched them - for example, if they really did feel trapped - but most autistic children don't naturally feel trapped by their own brain style. (Some feel trapped by movement difficulties, but even that need not be seen that way.) The child often wonders 'if you knew this was who I really am, would you hate me?' and feel your expression of love isn't real.

"The child can be spared considerable confusion, in many instances, if the divorce is as complete for him as it is for his parents. His father's visits almost always lead to additional rejection when they are eventually discontinued. The younger a child is at the time of divorce, the easier it is for the man to divorce himself from his child also. Although this may not be easy, in any case, and is not supported by the law, it is merely a recommendation worth considering. The child should be adequately prepared for his father's departure in either event."

"Most important of all, replace your child's father as quickly as possible by remarriage. Don't try to be a mother and a father to your child. You can't do it. You'll remain a mother, make your child excessively dependent on you, and confuse the masculine and feminine roles in life for him. The longer you put off remarriage, the more difficult it becomes for you and the less easily do children accept the idea. Remarry - it's the best thing you can do for yourself and your children."

"In the case of the death of a child's mother or father, the recommendations above still pertain. However, the most important thing one can do is to supply a substitute as soon as possible. A child's daily physical care is the paramount issue. No woman can be father and mother to a child alone, nor can any man expect to perform the functions of mother and father himself. The greater problem, of course, is the death of the mother. Ideally, some immediate substitution should be made. A maid or grandmother are good temporary solutions. Remarriage is the best permanent one."

All of this advice is precisely the opposite of what is really best for the child. Absentee fathers are a big problem, and this should not be encouraged unless the father is abusive. Regarding remarriage: a) single parenting is not a big problem, provided they have (and use) a good support system, b) you can't be choosy if you're in a hurry to get married, especially since many people don't want to be stepparents, and therefore are more likely to make a poor choice, and c) children need time to adjust and grieve (especially in the case of death rather than divorce) and even after many years may be unable to accept a 'substitute' (in fact stepparents must never be portrayed as a substitute, because they are not the same person as the child's parent). The only children to whom this advice wouldn't necessarily be damaging are children under 2, who will be fine as long as they have good parenting (however, making a poor choice in spouse or having unresolved grief can adversely affect them long term).
The other advice they have for children in case of death is also damaging, because it encourages the parents to minimise it and ignore or suppress the child's grief, in the idea that children grieve not because of their own loss but rather modeling from parents, and that grieving is unhealthy for children.

"Under no circumstances is spanking your child the best technique of discipline. No doubt you have friends who feel differently about this. Certainly you must have heard them say, 'Why, when my child behaved that way, I gave him a good spanking and that was the end of it.' They're telling you the truth, too, in their naive way. Probably it was the end of it - from what they could tell.
But were they in the best possible position to make this diagnosis? They were interested in a specific result and got that result, but do they know what else happened in the thought, feeling or behavior of their child not obviously or immediately related to the very specific misbehavior they were trying to correct?
Spanking a child is effective only if it hurts him - hurts him enough so that he becomes afraid, not only of the thing he might have done, but of you. ... Spanking our child has still another unfortunate effect upon him. Just as he learns to fear us as a result, he will also learn to resent and hate us. Since our child also quite naturally loves us, we place an enormous burden of conflict upon him by infusing his feelings of love with those of fear, resentment and hate as well."

This seems to me to be very accurate, not only about spanking but any kind of aversive. Some aversives don't exactly hurt, but any effective aversive is unpleasant enough that the child will fear getting it. You can fear eating something disgusting, for example, even though the unpleasant taste isn't painful.

[children up to about 10 don't mourn much unless parents overburden them with their own grief]

Changeling Lullaby

Changeling Lullaby, a video version of the song published in Our Voices.

[Edit: Here's a related post by Amanda Baggs.]

Whose Side Are They On?

According to many parents of autistic kids, at least those who know the history of autism, psychoanalysts were 'the bad guys'. Many also hail early behaviorists as heroes. Certainly, they were much kinder to parents. Bruno Bettelheim, in his book The Empty Fortress, said that the difference between Nazi prison guards and mothers of autistic kids was that the mothers got at the children from a younger age (Bruno Bettelheim was a concentration camp survivor, and appears to have drawn extensively from that in his work). In contrast, in an interview I found with O. Ivar Lovaas, he said: 

"I can tell you that the parents that we work with are very nice people. We get to know the parents as people, and when you do that you find that there is no reason to believe that they produce autism. But a lot of parents still think that it must be their fault somehow. They have heard that the parents of autistic children do not express love adequately, so they bend over backwards to be loving. What they get for their trouble is even more bizarre behavior � the child smears his feces on the walls, bites his parents, and has violent tantrums. The parents are afraid to punish them for these acts because they have been told that the child behaves this way because he feels unloved, so if you punish him you are only making him worse. But this is all nonsense. And this theory has made a lot of parents feel terribly guilty and made the autistic child get worse instead of better." 

It's obvious which attitude parents would prefer. But if I was an autistic child in the 1970s, I'd much rather receive psychoanalysis than ABA, even though it would be worse on my parents (though admittedly not all psychoanalysts were quite as bad as Bruno Bettelheim). Here's why: 

"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense - they have hair, a nose and a mouth - but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person." 

(Ivar Lovaas, in the above-mentioned interview)

In contrast, psychoanalysts typically viewed the autistic child as a person and assumed their behavior was meaningful and important in some way. Behaviorists consider behavior meaningful, but in a very limited and simplistic sense of receiving a reward of some kind, and they don't question whether abnormal behavior should be reduced. Psychoanalysts ideally hoped their patients would become normal, but they were careful not to remove important methods of self-expression unless the person had better ways of expressing themselves (and even then, they were careful about it). In general, the treatment was much kinder. Psychoanalysts worked on building connection and understanding the patient. With higher functioning, adult patients, this was generally sitting or lying comfortably while saying whatever came to mind - 'free association' - but with children, especially if they had limited verbal skills, it was basically play therapy. The book Dibs: In Search of Self is a good illustration of this with a boy who probably was autistic (they call him emotionally disturbed). Here's Lovaas describing how he treated autistic kids: 

"Spank them, and spank them good. They bite you and you just turn them over your knee and give them one good whack on the rear and that pretty well does it. This is what we do best; we are very good at controlling these kinds of behaviors. This is also the way we handle self-destructive behavior." 

"One day I was talking with her teacher and Beth began hitting her head against the edge of a steel cabinet. She would only hit steel cabinets and she would only hit them on the edge because, you see, she wanted to draw blood. Well, I think because I knew her so well, I just reacted automatically, the way I would have with one of my own children. I just reached over and cracked her one right on the rear. She was a big fat girl so I had an easy target. And I remember her reaction: She turned around and looked at me as if to say, "What the hell is going on? Is this a psychiatric clinic or isn't it?" And she stopped hitting herself for about 30 seconds and then, you see, she sized up the situation, laid out her strategy and then she hit herself once more. But in those 30 seconds while she was laying out her strategy, Professor Lovaas was laying out his. At first I thought, "God, what have I done," but then I noticed that she had stopped hitting herself. I felt guilty, but I felt great. Then she hit herself again and I really laid it on her. You see, by then I knew that she could inhibit it, and that she would inhibit it if she knew I would hit her. So I let her know that there was no question in my mind that I was going to kill her if she hit herself once more, and that was pretty much it. She hit herself a few times after that, but we had the problem licked." 

"We stay close to them and when they hurt themselves we scream "no" as loud as we can and we look furious and at the same time we shock them. What typically happens is this - we shock the child once and he stops for about 30 seconds and then he tries it again. It is as though he says, "I have to replicate this to be sure." Like a scientist. He tries it once more and we punish again and that is pretty much it. So we can cure self-destructive behavior - even long-standing, self-destructive behavior - in a matter of minutes." 

"How do you avoid having the child become afraid of you? Lovaas: That is a good question. No one punishes who isn't prepared to devote a major part of his life to that child. Nobody punishes a child who doesn't also love that child. As soon as you suppress self-mutilation you start building appropriate behaviors. You reward the child for doing other things instead of hurting himself." (It actually won't work - I lived with someone who was sometimes nice and sometimes mean and I was plenty scared of him.) 

Which would you prefer - someone playing with you and getting you to express how you feel, or someone hitting you, yelling 'No!' right in your face and zapping you with an electric shock device? Which would you prefer - being viewed as a person who is hurt and coping the only way they can, or as a physical person who is not a person 'in the psychological sense'? Psychoanalysis certainly had its problems, but it was by far better for autistic children than ABA.