Something I wrote here was reprinted on Thinking Person's Guide to Autism (with my permission, at their request). It was the story about C. You know, the C who had no reliable and honored means of communication and who was given no agency?
Apparently it was an anti-ABA screed, judging of his parents (and damn right I judge his parents. I'm not a hypocrite-everyone judges everyone. "Judging" does not mean "makes a negative assessment of someone and shares it". "Judging" is making any damn assessment, good, bad, or neutral, and keeping it to yourself or sharing or whatever, judgement already made.) We all do it, all the time, it's one of the things that makes us human, conceited because I was proud of what I had done (I don't understand what's wrong with that?), a bad example because I yelled at a woman who grabbed a child's body and made him do things he expressly indicated he did not want to do (because autistic kids don't deserve bodily agency? Forget that), and all kinds of other things I didn't say.
There are all kinds of controversial things I actually do say. If you must yell at me-and sometimes I think "terrorize the autistic" is an international sport-then yell at me for something I actually said. Don't yell at me for "tone"-we have had that discussion before and I think it should be an offense punishable by being cut off from the internet for 3 weeks. If I am talking about a specific event, unless it is about you it is not about you. You probably aren't that important. If I say something about a specific person, place, thing, or idea, I'm dead certain it's true. I have a painfully good situational memory and good pattern recognition-things that are honed to, you know, predict when people are going to slam your head into a wall.
I avoid contact with people who do these kinds of things because I've already had enough of it. I know where to find my mother (dents in the skull for all!). Speaking of skull dents, I know where to find the sack of shit who put me in the hospital with adrenal crisis, brain swelling so bad I couldn't stop throwing up and couldn't see. I know where to find the sorts of other people's parents who stab me in the arm-and yes it happened and go fuck yourself if you are going to tell me that I probably deserved it. No one deserves to be stabbed in the arm by a stranger or even someone they know, even if they are committing the huge crime of being autistic and adult at the same time. I know where to find the sharks. But I am tired of being forced to swim with them.
Yup, I'm getting tired of this 'all parents are wonderful and just want the best for their children and how dare you criticise' trope.
ReplyDeleteFor the record, I meet parents every day, in the context of injury/illness of their kids. And though many are great, poor parenting isn't some one-in-a-million occurrence.
A purely practical example - last year I spent some time anaesthetising for dental treatment, and we were removing rotted teeth from three, four and five year olds. Not one or two teeth, but four, six or even all teeth. Not teeth with a bit of rot, but teeth that were completely rotted to the gums. And I've seen this in several different countries. A significant number of parents can't be bothered to get their children to clean their teeth; how can anyone believe that the number who can't be bothered to comprehend their child's complex needs for communication and agency is less?
What these parents refuse to grasp is this is why they need to take a smaller role in the advocacy movement. Because while most autistics can grasp that there are a lot of kids being subjected to appalling treatment, these parents simply can't let go of this OMG you're criticising a parent reaction, and would rather suppress that criticism than enable the lives of all autistics to be improved.
I would hold on to the fact that there were some parents replying on the thread who did get it.
What's happening at TPGA is absurd, and your original post was wonderful and much-needed. That it has received such a negative reaction from many speaks badly to their willingness to grant their own autistic kids autonomy IMO. Clearly this is at threatening idea, and that's really sad.
ReplyDeleteWhen parents insist "but I'm not like that" and then proceed to be so critical of any autistic adult who dares suggest that their own parents (or parents of another autistic person) are less than 100% perfect, I have a hard time believing that they're "not like that." If so, then why so sensitive to any criticism of any autism parent? Urgh.
I have written about how my parents sometimes hit me when I was in the middle of meltdowns, only to have people try to justify them to me. Just, no. A thousand times, no. I have my own complicated feelings about that. I don't need some stranger jumping to my parents' defense just because they want to justify how hard it is to parent an autistic child. Being autistic does not lower the standards of care and respect which we SHOULD get from our parents. At all.
People complain about "tension" between autistic adults and non-autistic parents. Well, maybe if more parents didn't feel the knee-jerk reaction to defend all other parents in all circumstances, no matter what, there would be more amiable relations. I get along perfectly well with a number of non-autistic autism parents, including in real life.
Sorry this happened, I read those comments, it's sad, I didn't have any energy to comment there. Such a important post you made and they focused on things you didn't said.
ReplyDeleteI did love that post.
My ears actually hurt from the cognitive dissonance of some of the commentary over there. It's a great post, and I was stunned at some of the ways it was completely misconstrued.
ReplyDeleteFor some reason it seems like the comments over at The Thinking Person's Guide to Autism disappeared with no explanation. It kinda upsets me because oftentimes I feel like parents try and cover up for other parent's screw-ups. It's like they don't want to admit to having that ugly side.
ReplyDeleteWell that's upsetting.
ReplyDeleteI don't want to not know people think like that & have sticks up their asses. i want them to, you know, not have sticks up their asses.
Untoward Lady: one parent commenter took a whole bunch of her own down. One of the editors accidentally took another down but reposted it.
ReplyDeleteUnless more than that have disappeared since I've been back...
I can tell you I am a parent who had that ugly side. And it was because of my horrible fear that this behavior would last forever. Our lives were a constant stress of things getting broken, poop smeared on walls, getting called about peers bitten at school, fears of elopement. I could see us needing to put our son in a home in a few years if nothing changed. It wasn't until I could recognize my projection, let the future go and accept only my kid in that moment that we were able to make changes. I am not proud at all that I did that to my kid. I am still working on forgiving myself. But today is today, and I am still working out how to let him self-advocate in daily activities. So keep up the good work. No education is wasted, even if the student is not ready to learn right then.
ReplyDeleteYeah, but I was specifically addressing what you SAID, which was it is playing God to make a 9 year old get out of a pool before they want to, and what the hell is wrong (!!) with someone who would use hand-over-hand. It was anti-ABA rhetoric with absolutely no backing- not even a personal reason for being against the methods of ABA. And had it been on your own personal blog, I probably wouldn't have bothered- you are entitled to your opinion, of course. That's not even a question. But many people come to Thinking Person's Guide to Autism and assume the opinions represented on there are sensible, if debateable. Trashing the techniques of ABA without expressing what is exactly wrong with them influences people to make treatment decisions. To date, ABA is the most empirically based treatment for the behavior problems and developmental delays of ASD, and you are steering people away from that path because of some misguided ideas about the parent-child relationship.
ReplyDeleteYou are obviously not anti-treatment, as you were expressing helping this child communicate by meeting his needs and respecting his objections. You have some opinions about classical ABA that show up in your piece, however, that I do not agree with. It's probably debateable- we could probably have a really intelligent conversation about children's rights and bodily agency. But you made blanket statements highly critical of some aspects of ABA without explaining yourself. You also really failed to express what it was about C's parents' behaviors that led you to believe they did not care about him and saw him as a burden. Again, on your personal blog, that's really not an issue, but as a piece standing on its own on TPGA, it seems that just because the parents did not agree with your treatment philosophy 100% and had no problem exerting their will over their child was enough to prove they were psychopaths who did not even like him. You made a lot of statements that were not backed up- the parents saw their child as a burden, hand over hand is seriously messed up, giving a child boundaries is playing God- and I just found it very inappropriate for a site whose primary audience is probably parents who have to make decisions about balancing their children's emerging self advocacy with their need to make grown up decisions about how to best raise their child.
Yeah, uh, I never said anything about "playing God". Religious people use that language. I am not religious.
ReplyDeleteWhat the hell IS wrong with someone who will drag a kid's body through something they have emphatically said they don't wish to do? No, really. I don't see how that's remotely acceptable. We teach NT kids that no one should touch them if it makes them uncomfortable, then people go and do it to disabled kids all the time regardless of objections? Are you familiar with the sexual abuse rate of disabled people? (hint: it's high. Like really high).
Given that I'd like to maintain some privacy for C, even if his parents make me sick, let me just say that I spent more time with him than his parents did (he had an 8h school day + 5h "services" on weekdays, weekends he had like 10h or more "services", & he slept, of course). And there was a prominent murder-of-disabled-child case in that area, & his parents were in the paper REPEATEDLY saying that everyone thinks about it & supported the killer.
There's a pretty damn big difference between 'exerting one's will over a child' (which sounds all sorts of "To Train Up a Child", which is the evangelical abuse-your-kid-to-death manual but anyway) and making it impossible for a kid to express what they need and want. You start taking stuff out of a PECS book because you don't want them asking for it, you suck. End of story.
I missed the original post on TPGA. I apologize for jumping into the conversation without having read the back story first. I also did not know it was your post that started all the hoopla I've been reading about recently on other people's posts.
ReplyDeleteI have to say though that reading this post and a lot of the comments on here damn near broke my heart. I do ABA with my son. I'm coming clean right now. But it is a Verbal Behaviour approach that is child centered. No one forces him to do anything. (I've heard some real horror stories about what I THOUGHT was "old ABA" - much like "old medicine" and "old psychiatry" where methods were questionable at best, but as fields grow they become better. Apparently ABA is still on this road out of infancy). What we do with him is try to make learning fun (peppering it with his favorite toys and treats and things) to try and help him to speak and express himself.
The hitting thing during meltdowns... Just... I don't have words for that. I almost feel like I should apologize for the whole NT community. We're not all perfect and a lot of us are downright disgusting. But we're also not all like that. My son needs a hug to calm down when he has a meltdown. That's usually all it takes. A "Mama hug" when he's ready to be hugged. He lets me know because if i try to carry him when he's not ready yet, he pulls away from me and screams louder. So I back off and try to offer alternatives. They're usually shot down. So I just stand there for a while getting more and more stressed out about the pain he's in until he can finally decide that it's time for a "mama hug" and I can soothe him in my arms.
I cannot believe how ignorant I have been. If NT children can be abused, terrorized and grossly mistreated, it stands to reason that a lot of kids on the Spectrum get similar treatments (or worse?) only without as many coping mechanisms as NT kids have. Or maybe without as many coping mechanisms is the wrong way of putting it. SPD goes hand in hand with ASD, so having that type of sensory overload is something that I can't even begin to imagine.
ReplyDeleteI have not been able to read all the comments on this post, but I will come back to do it soon. This is a subject I can't get enough of, although my available time to research is truly limited by my 15 month old daughter who has quite a strong separation anxiety. My son (4) also takes up a lot of my time, if not through direct care, then through all the hoopla I have to go through to get him services, support and help, as well as understanding and acceptance from his local community (in his case, his nursery where he has had physical injuries due to bullying. I had to pull him out of school and have a meeting with my member of parliament in early December to address the wider lack of policy towards helping those on the Spectrum within local and national government. I also have an appointment with the school to address these concerns. Fortunately the Principal of the school is extremely understanding and has handled the situation admirably so I have hope that things will improve.
I'm sorry for being all ramble-y on your blog, but I just wanted to add that I am in no way a perfect parent. I have f***ed up plenty of times. But I try to learn from those mistakes and I try to understand what is an "acceptable" demand to make of my son and which is a totally unreasonable one because of the way his mind works, or the way he perceives things (sensory issues) or whatever.
I want to apologize again for "jumping down your throat" in the comments on the new TPGA post. I think my main mistake was not visiting your blog before replying to get an idea of where you were coming from. I reacted viscerally to what I though had been an unfairly harsh comment. I think if I had perhaps known a little more of the "back story" I would have reacted differently and perhaps our "conversation" would have been more amicable.
If I could trouble you with one last thing, could you possibly send me or reply to this comment with the link to the initial post that you made on TPGA? I would like to start from the beginning and read the whole dialogue because I am obviously missing some massive chunks of it. Please don't worry if you don't have time though, I'll try to dig it up myself later on when I have more time...
Take care :)
@marsupialmama:
ReplyDeleteI've posted twice for TPGA so I'm not sure which you want. The original one about C was posted here at http://timetolisten.blogspot.com/2011/10/advocacy-everyone-can-do-it.html (not long after my I DON'T HATE PARENTS yearly disclaimer, cuz really, I don't). The TPGA one, where people think I said things I didn't say, was here: http://thinkingautismguide.blogspot.com/2011/11/advocacy-begins-with-no.html
And my dialogues post, which talks about how my parents are skidmarks on the undies of humanity & how the parent centered model of services almost quite literally killed me, among other things, is here: http://thinkingautismguide.blogspot.com/2011/09/advocateparent-dialogues-day-seven.html
PS. (Did I already ps. here? I can't remember!) I did manage to lump the Hubs with both kids so I could keep reading the comment section because this is all new to me (I know, I've been in this long enough to have dipped my toes in the controversies, but I tend to avoid conflict if possible and that's my lame excuse for staying ignorant of some of the issues).
ReplyDeleteI would like to say (in no particular order since I think I've already made clear that I'm a rambler!) that I do do hand over hand with my children (I think my daughter is NT, but I'm not sure yet, she's too little to say for sure). I don't make them cry doing it though, and if they start whining/escaping, I don't push it.
The other thing I wanted to say is that I AM GUILTY of that visceral reaction to standing up for other parents of kids on the Spectrum. Not ALL parents, just Karen. the reason I had that reaction is that I've followed her blog since I first got introduced to the bloggy world when i started my own one. And thank God I did (don't know why I use that expression, I'm also non-religious) because i could never have learned what I know now through a book. There are so many intricacies to this issue, clearly.
But the reason I defended her is because I "know" Karen to be a smart, caring individual who just wants what's best for her son, including giving him the ability to self-advocate. That's all a lot of us parents want. And, you know, our kids not to get bullied and beaten up in school, but I think that's the same with MOST parents whether they have NT or ASD kids.
I also want to apologize for "polluting" your post with so many comments!! Yes, i am embarrassed about that and have only done it to "dialogue" with you. I don't mind if you delete my comments at all. I just wanted to make my last few points to YOU. My intention is certainly not to highjack your blog or post.
Thank you so much for those links. I can hear the kids screaming and it's hard to tell if it's laughter or the worrying kind, so I'll be off now, but "I'll be back" (a la Arnie) to read through all those links. Thank you so much for those. And yeah, the one I wanted originally was the one about "C's parents" mentioned above, but THANK YOU for the other links, they're definitely things I want to read and will do so soon.
ReplyDeleteThanks again
Hi, Kassiane -
ReplyDeleteI'm sorry your mother was a bad one. There are bad parents out there. No one deserves abuse.
I've been reading here all along. Yes, it's hard to dialogue. I'm sorry if my comments over on TPGA caused you pain. To the Untoward Lady - I deleted my own comments over at TPGA. There was no intention of "covering things up" but to delete what was described as being off topic by an editor on FB. But I can see that doing that just created some weird holes and now Chavisory looks like she's talking to herself.
It is hard to not be defensive as a parent when I read some statements in your post at TGPA and others' comments there and here. For instance, when I read your post, I had all kinds of images flash on a screen in my head from real life in the past. Sometimes you can amend the plan in life and sometimes you can't such as if they're closing the pool. True story from real life. Image playing in my head right now.
Your point about giving kids autonomy over their bodies and then telling them something different by not listening to their no is so important. I can see this is a danger that would create vulnerability in the future. I have a lot to think about.
Dixie
You did the right thing to empower C. That's all I got to say.
ReplyDeleteYeah, they did. It was at an autism conference.
ReplyDeleteBeing autistic at an autism conference is "asking for it". The group the guy was with was gone the next day, but no one, like, DID anything. We need a social story:
"I have opinions. Other people have opinions. Sometimes other people have opinions that are different from mine. This makes me scared. I will not stab them in the arm."