Conversation with an autistic friend

It makes me kind of rage-y
I feel bad for their kids. I think there’s so much MBP going on there.
Münchausen syndrome by proxy —the condition that makes parents feign their kids’ illnesses, or inflict illness upon them.
ah. yes.
Like they are imagining all this weird digestive trouble?
You’d have to be pretty damn sick to contaminate a child’s food or actually make them sick on purpose, but I do agree that some of those treatments could make the kids feel terrible.
And then, OMG!!! new symptoms.
No, I don’t mean that, necessarily.
I don’t think they’re making their kids sick.
Well, some of them, maybe.
But I think what sets off my MBP alarm bells is two things—one, the way they actually take offense if you suggest their child has a future.
I mean, there’s this strong “HOW DARE YOU imply my toddler isn’t doomed to a life of catatonia! HOW DARE YOU be so insensitive to MY suffering!”
Especially when, later, they’re talking about their kids’ having conversations and stuff, and the way they describe their kids (when not arguing their ideological point) is… well, normal autistic kid. Weird, but not debilitated.
And then there’s that “MY suffering” thing.
I mean… I can understand, to an extent, I can grasp, how a parent can sincerely believe “my child would be better off, be happier, have a higher quality of life, if he didn’t have these autistic traits that set him apart,” and thus conclude from that that “curing” the child is in the child’s best interests.
I disagree with the reasoning and the conclusion, but I can respect the good intent behind that.
But, that’s not what I see.
What I see in the pro-cure community is all about THEM.
They cannot have normal lives.
You will admit that’s true, no?
You can’t have a normal life in the early years of raising a full-on autistic kid, even if you’re not into all the therapies, etc.
Some people adapt, and some people go nuts.
right, that’s true. The same is true of raising a NT child, though.
They are overwhelmed.
That’s what makes me sad.
Some of them are vile people who would browbeat any child and be dissatisfied, but most of these people are confused and overwhelmed.
But why not reach out to the possibility of not being overwhelmed? Why not acknowledge that the early years are hard, but that it gets easier as the child grows and matures?
Nobody they view as credible is saying that.
Doctors tell them otherwise.
If they’re not used to calling shenanigans on doctors (like autistics usually are by adulthood), then doctors know more than “laypeople.”
The establishment makes them feel safe when they feel unsafe.
Maybe. But I think a lot of them like it.
Maybe they do. They get to feel like they’re doing something right. They have these weird kids they don’t understand and they discover that the world will praise them and give them some sympathy and encouragement if they act all upset.
But that’s what MBP is.
It’s an addiction to the praise and sympathy and attention lavished on the mothers of “special needs” children.
I get you.
But those parents usually resent their kids.
I’m convinced most of these people don’t. Or don’t know that they do. Maybe they do know that they do.
I don’t know.
You may be on to something.
I don’t talk to parents of autistic kids much.
So what would you propose to convince the MBP parents?
a swift kick in the teeth.
But, diplomacy was never my strong suit.
hehe. Maybe having autistics speak at medical schools?
Would they listen to us?
They’re young and excited about ideas.
The medical schools would have to consider autistic voices important. Doctors, in general, don’t consider patients’ (even NT patients’) voices important.
This is true. It just seems like the only way to really get through to them is to get to them before they’re completely set in their ways.
Some kind of way to meet them. Maybe before med school at psych departments or education departments.
Trouble is, every autistic person who speaks out, even a famous one like Temple Grandin, is dismissed as the exception to the rule.
Or, their success is because “the treatments worked.”
I’ve had several people say to me, “you say you were harmed by treatments, but maybe you wouldn’t be as high-functioning as you are today without them.” Seriously? Do you know what “treatments” were like when I was a kid? Do you think I learned to talk because I was in psychotherapy for “neurosis”?
No civil rights movement ever took off without self-advocates.
It’s just a matter of gaining enough steam.
It reminds me of Frederick Douglass.
when he wrote his experiences and gave his speeches, his critics thought he must really be Turkish, because no way could a Black person be smart.
Yes. I was thinking the same thing.
I think the move for autism acceptance will take a long, long time unless there’s suddenly a non-autistic celeb who has nice things to say about the community.
How will that happen?
I have been thinking on this for a while. The normies seemed to believe Jenny McCarthy when she said yes, it could make you loose your soul. They love stars.
Johnny Depp picked up on the West Memphis 3 because people wrote him letters.
He did?
And he and Tim Burton are odd beyond the oddness one can achieve through mere affectation. Perhaps some celebrities would be sympathetic or be able to relate.
A parent of an autistic child would work.
Do you think it would be worth trying to get some sort of celebrity spokesperson for the autism acceptance movement?
yes, I think it would.
Wasn’t John Travolta publicly flamed by an autism group for not “treating” his autistic child?
I think he might have been but then, did anybody ever confirm that his son was autistic?
I don’t know.
I mean, if the parents didn’t believe in evaluating/treating, how would an outsider know?
I think they just sort of picked a disability and ran with it.
The sick part is that they were picking on parents of a recently deceased child. They started that shit like, a week after the poor kid died.
It was before then.
Oh. I only remember hearing about him being autistic after his death.
I remember, because when I heard the son died, I wondered “is that the allegedly-autistic child they were attacked for not treating?”
The entertainment shows my mom watches brought it up, as well as his lack of treatment.
Right, and, I mean, WHAT treatment? For an older, verbal child, what kinds of “Treatments” are allegedly necessary?
It’s not like they didn’t take care of him. He had private nannies, and his family was always around him.
I hate that they were accused of hiding him from shame. They probably didn’t want the press poking fun at him.
Also, they’re filthy rich. Even if they had a severely autistic child who could never, for instance, hold a job, do you think he’s going to be suffering?
It’s this attitude that treatments, any treatments, all treatments, are good and necessary, that is so much of the problem.
All treatments should be for a reason. Is there a problem that needs to be corrected? If so, what is the specific nature of that problem?
No one asks these questions about autism.
It’s always just “more treatments! better treatments! earlier treatments!”
As if the more of your time and money and mental energy you expend in “curing” your child, the higher his quality of life will be.
I like poor people.
They’ve given up.
Maybe I’ll become a communist. But only on the weekends.
I hear about these things and it seems like mostly a middle class problem. Not that the suffering of those kids and the confusion of the parents isn’t real.
Just, the poor people I know who use public health services do their best and then they decide that it’s enough.
Because 50 hrs a week of therapy for their kids is an impossibility, their doctors give them a plan that involves about 3 hours a week and a little homework. They seem much less tortured than the ones out mortgaging their houses.
Right, and it’s worth keeping in mind that the “suffering” of autistic kids really is a middle-class problem, by and large.
That’s exactly what I’m saying.
I get cranky when i think about putting in a 90 hour week. That’s what those kids do when they’re 5!
If the kids were receiving money for it, they’d be in violation of child labor laws. But because the parents are paying for it, it’s fine.
I sometimes wonder if there is a way to make this point clear. I may flatter myself but I think I experience slightly less cognitive dissonance than your average bear. I never know how to respond to them.
The psych industry has such an incredible grip on people.
It’s so Orwellian. War is peace. Freedom is slavery. Abuse is “help.”
It seems tied to the middle class ethic. You’d think it would be dying out by now.
We hardly have one left!
But everyone THINKS he’s middle class.
Which is the only reason we haven’t had a socialist revolution yet.
That’s just because they are bad at math and have credit cards.
You know, the thing I’ll never forgive David Kirby for, is that he turned the natural living community against us.
I mean, the hippies. The freaking HIPPIES. Reject mainstream medicine, free to be you and me, love yourself.
But he’s got them connecting autism with vaccines and “toxins,” so we’re somehow something The Man is inflicting on them.
We’re a fringe minority group outcast by society, and the damn HIPPIES think we need to straighten up and conform.
Nobody teaches critical thinking in schools. Sad.
We do tend to be rigid and don’t attend many of their cuddle parties.
Right, and I have this whole theory about how autistic rigidity is seen as an exaggerated version of what they see as excessive social rigidity caused by modern living in general, so it makes perfect poetic sense (if not actual medical sense) that autism is caused by, and thus some kind of karmic punishment for, the hyperindividualistic, rigid, unemotional, social phenomena they so disdain.
Like my husband. He’s not a hippie, but if he hadn’t met me, I could easily see him buying into the idea that all the social trends he disapproves of (urban sprawl, packaged foods, microwaves) are causing a medical epidemic of a disability characterized by lack of human emotional connection.
They do like their shamans and sympathetic magic.
So how do you get through to them?
I have no clue.
I try to form arguments on their terms.
If something is true, then you can argue for it several different ways.
Like, point out the absurdity of the “stolen child” language. Some of these people believe rocks have personalities for gods’ sakes!
Rocks have personalities?
or souls, etc.
Oddly, I don’t try to argue much with parents of autistic children. They’re the ones with the most power in this situation, but it’s too emotional with them. It always falls back on “MY CHILD” and “YOU DON’T KNOW MY CHILD!” It’s a waste of effort to try. I try to argue more with people without direct connections to autistic people. Your basic well-meaning but clueless people who think “curing autism” is a good cause like “curing cancer.”
That’s where I focus, myself.
But I do tend to run into parents, and I never know what to say.
Especially the vaccine people.
Well, there’s a grain of truth to the vaccine people. A grain. For children with preexisting mitochondrial disorders, seizure disorders, or allergies, a vaccine reaction CAN trigger symptoms that mimic autism. It’s rare, and it’s by no means an “epidemic,” but if a child has shots, then seizures, then neurological impairments he didn’t have before, it’s entirely possible that there’s a medical issue going on that isn’t organic/heritable autism. And I blame the doctors for not taking that seriously, just slapping an “autism” label on the kid. So now there’s a statistically tiny number of parents out there with a legitimate beef, but they’re dragging all 1 in 110 of us along with them.
So I can deal with the vaccine people.
It’s the “my child is only 3 years old but I already know he has no future” people that I don’t know how to deal with.
I have tried telling people that bit about mitochondrial disorders. They simply ignore it. Their kids are the sick ones. The victims.
None of the odd ducks in the computer science department are autistic, because they have friends, etc.
Right. I think because most of us weren’t diagnosed as kids unless we were severe (or we were diagnosed with learning disability or something), autistic people who’ve gone their whole lives thinking of themselves as normal are highly resistant to the idea that they’re not. And maybe some of the resentment of their children stems from that.
I was always considered normal, and I’m very outgoing. I just do it wrong.
They’re also usually the ones denying that Asperger’s and suchlike are “really” autism, because “I have those traits and I’m not autistic!” No, dear, of course you’re not. Your child got it from the shots and most definitely didn’t inherit it from you. It’s just a coincidence that your whole family is weird and talks funny.
And, of course, their children usually are more “severe” than they are… but of course, they’re adults, and their children are children, and then we’re back to “my child will never grow or mature or develop unless I cure him.”
I have many acquaintances with whom I chitchat between classes about books and comics and politics, but I have only seen 2 of them outside campus in the years I’ve known them. Still they say “you have friends!”
I think normal adults have more than one friend they see outside of school or work every 6 weeks or so.
I think so. I don’t have any in-person friends. I had some, but I ran them off. But I can type, so I’m not really autistic.
I’ve said it before—I’m flattered by the praise, but if I’m the most articulate, the most well-spoken, the most intelligent autistic person you’ve ever met, you’re only revealing your own limited exposure to autistic adults.
There aren’t THAT many.
It seems like I hear about more autistic people than there possibly could be.
I think there can be that many. I mean, I think it’s overdiagnosed, but between 0.5% and 1% sounds right.
Now that’s still a small minority of the population, but, you know, if you’re the first Zoroastrian I’ve ever met, I still don’t get to fawn about how you’re so much smarter, so much more articulate, so much higher-functioning than all those other Zoroastrians out there.
I mean, when they say that, they’re by and large comparing us to kids under 5. Isn’t that the definition of condemnation by faint praise? You’re so much more articulate than this toddler!
This is true.
So again I’d get back to, how do we get through to them, if only to impart what should be the common-sense message that a preschooler cannot be compared to a middle-aged person?
It still stumps me.
How can you make it simpler?
You can’t. I think it’s probably just going to have to end in a propaganda war.
And we’re the minority. Not only the tiny minority of the general population, but even limited to the “autism community”—every person has two parents, so (if you assume that every autistic is on one side and every parent of an autistic child is on the other side, which I know is nowhere near that simple), for every one of us, there’s two of them.
And of course add in the fact that most autistic adults aren’t diagnosed.
Yes. But people can have their minds changed.
The one thing that makes this different than other pushes for rights and against discrimination is the fact that we are their children.
The best hope, I think, is for when this generation comes of age. And they’re starting to. A kid born in 1990, diagnosed with ASD in ’94 when it started to take off (oh-so-coincidentally, when they hugely broadened the diagnostic criteria) is turning 21 now.
But then there is the internet backlash against the “fake autistics.” Lots and lots of Youtube videos about how other advocates aren’t actually autistic.
Like that bikini artist girl.
However, this generation of autistic kids (this generation of kids, period, but the autistic ones even moreso) has been raised with SO much learned helplessness.
I mean, I see people in their mid-20s—NT people, mind—living and being treated like 12 year olds. And I kind of blame cell phones, but that’s not the point. This is a terrible time to be an autistic kid coming of age. These kids and young adults are so battered down by years of emotional abuse (excuse me, “help”) that half of them are believing the lie of their own incompetence.
Now, they won’t forever, I’m sure (though I’m also sure it will require a painful process for them to overcome this). But meanwhile, they’re going to be ammunition for the other side.
(And by a painful process, I don’t mean therapy… you know this…)
oh yes.
I was sheltered.
My parents still have to help with things sometimes.
I have become much more capable, but I wonder how I might have lived if they’d not spoiled me so much.
Now I see these kids, and it’s like they feel it’s their right to stay children until they’re 35.
Fine (if you don’t want kids) but do something fucking useful!
And really, it is a stupid idea to wait until your 30’s to decide if you want kids or not. Stupid. That’s not anti-feminist; it’s just the facts.
I don’t understand it. I wanted to grow up when I was a kid. And I didn’t have bad parents! My parents never abused me, mistreated me, anything. But dammit, I wanted to grow up and make my own decisions! It kills me, these people, sprouting freaking gray hairs! Still letting Mommy call the shots.
It’s just scary that they don’t have their own opinions.
Since when are 20 year olds supposed to be conservatives?
Since they were bad at math and got credit cards.
I guess so.
You have a 5 year window in which to have children. 30-34. Younger than that, and you’re too young and “are you sure you’re ready?” and “having children is a big commitment, you know.” Older than that and you’re too old and you’re dangerous and you need a managed birth and your child will probably have a fatal genetic defect.
I was appalled to learn that some of the people I know have terminated pregnancies because of nonfatal abnormalities.
And then expected people to feel sorry that they had “lost” a baby.
I don’t think that people mean fatal genetic defects when they talk about its being dangerous to have babies after 35.
You’re probably right.
And when they get the genetic test finalized, autism will be added to that list.
Oh yes.
But I’m not sure a reliable test will be available for years.
Maybe, maybe not. Why it matters, though, is that it means the autism acceptance movement has a deadline. We can’t wait 50 years to change the popular perception of us, because by that time we’ll already be purged from the gene pool.
I agree with you there.
What effect will it have on society to have no autistic people? No broader autism phenotype people? No awkward gum-chewing nerds?
Not a good one.
Lots of very bad art.

Yes, I’m a dreadfully lazy blogger posting a chat transcript instead of writing a proper post. Edited for language and clarity, and to add relevant hyperlinks and change “Lucy’s” and my names.

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9 Responses to Conversation with an autistic friend

  1. Re: “treatment”/abuse: I can credit a lot of my “normal” behaviors/passing ability on the abuse I suffered. But the damage it did me I think is more than could be made up for it even by the people who think people should pass. (I don’t think we should have to pass.) Now I’m scared- no, terrified- of a lot of things, get flash backs, and can’t handle men with deep voices or them yelling.

    So, yeah.

  2. Heather says:

    I wrote a piece for The Thinking Person’s Guide to Autism that spoke to the “My suffering” part of the “curebie” community. But I think what really rang my bells was the MBP feeling to it all. I don’t think anyone is actually making their kids sick (although I’m sure there are SOME cases just because of statistical probability suggests there would be) but i think a lot of them take advantage of the illnesses to garner that sympathy. It’s almost as if they’ve been “blessed” with an ill child and they don’t HAVE to make the child sick but that if the child did not have these p roblems–maybe they WOULD do it but they don’t HAVE to. I know some of my friends would be angry/offended at the thought of this for those that do have children with guy issues, etc. But as I said, I don’t think it’s all of them.

    It’s the one that focus on THEIR suffering at the hands of having an “ill” child. Not on the child him or herself… if y’all get what I’m saying which I’m sure you do.

  3. Tricia says:

    Gosh, where to begin…
    I think a lot of services that are now available to new parents bear some of the blame. You used to parent by instinct and words of wisdom from relatives and other mothers, but now you have specialists who can come into your home to support you. The problem with that is that you then have someone telling you “he should be crawling by now” “he should be talking by now” “he should be playing piano by now” thus leaving parents feeling like they don’t know what they are doing. So then everyone becomes concerned that something is not normal. Instead of empowering parents to trust their instincts, they are thrust into a world of experts who know so much more about their child. I think the intent of the programs is good and many parents really do need extra support if they don’t have family or friends around to help them. Where they need to change is to actually instill confidence in parents and reinforce parental instincts. I believe that a part of the problem is the fact that so many people lead solitary lives. Moms used to gather at each other’s houses with all of the kids running around or they would all be in swim classes together or some other community based activities. It takes a lot to get out there and become social, but I think the benefits outweigh the uncomfortable ickiness that the thought of being around other people brings about. Start building a support network of friends for yourself and for your children.
    It would also benefit those programs if autistic adults were going to them and educating them about what it’s like to be autistic and explaining to them how their role in spotting and reporting special needs in children could lead those children down a very damaging road. Let them know the damaging affects of certain types of therapy and medication. Challenges (motor skills, communication) can be helped and families supported without using intensive behavior modification.
    You see, it all starts somewhere…and once that seed of doubt is planted, the parent is no longer the parent…they are then a victim. Then a dx or two comes and another specialist tells the parents that they are sorry, but their child has autism and will need treatments in order to try to function in the world and even with that, there are no guarantees it will work. So that needs to change too! The delivery of the dx should not be so somber and devastating. Hey, it’s not the end of the world…your child is still the same child that he was a week ago.
    I think having a celebrity spokesperson would be a great help for all of this…as long as it isn’t someone that everyone thinks is an idiot.
    I, personally, am so grateful that i wasn’t dx as a child or teen. I can only imagine how psychologically damaging it would be to go through life with everyone around me telling how different i am. Sure, I had hard times growing up….everyone does, but no child wants to hear that they are different. They want to be included and they want to have friends and they want to be liked. Telling a child that they are different will only lead to self-esteem issues. Plus, if people are encouraged to refer to other people as “different” than it opens the door for discrediting that person. I’ve been experiencing that from people that know i’m autistic…as if my thoughts or feelings aren’t valid or trustworthy because my mind is defective. This is the life that all of the young autistic people have been living for 20 yrs…not trusting themselves or their thoughts or instincts. Believing that they will have a hard time finding love or getting married and most likely not doing either let alone having kids. It’s so criminal. I see young autistic adults begging for more therapy and convinced that they will never have a life without it. We need to have our voices raised above those that want to perpetuate those negative outcomes.
    I’m not saying that there aren’t some parents out there who are abusive or self-serving…there are…and there are just as many autistic kids being physically and verbally abused as in any other fraction of the human race (i totally don’t know if there are actually stats to say if it’s less or more for autistic kids). I’m just saying that society has changed and we need to start being more about real communities and figure out ways to support each other out in the real world as well as we do online.
    Oh and as far as the vaccine stuff…can’t they just test mothers or newborns or both to see if they are at risk for a reaction and then just check a yes or no box on whether to give the shots?? Too easy? probably :/

  4. adkyriolexy says:

    Tricia, I do agree… sort of. I understand parents’ frustration when they’re being told these things by authority figures. I don’t understand *clinging* to that frustration. I understand not knowing any better. I don’t understand actively choosing to believe the worst of your child’s potential rather than the best. Parents are supposed to believe in their kids. Parents are supposed to say that the eardrum-splitting cacophony emanating from their child is the most beautiful singing they’ve ever heard, and they’re supposed to mean it. I don’t understand disparaging your child’s strengths in order to gloat over his weaknesses. I don’t see how Alison Singer can actually say that she doesn’t use the term “differently-able” because her child isn’t “able.” That’s not a desperate parent fearing the worst; that’s a self-aggrandizing media whore throwing her child under the bus for attention.

  5. Tricia says:

    Yeah, I know it’s hard to make sense of it all and I can’t pretend to know all of the reasons why people do what they do. I mean really, you’d have to know the personal history of each of those people to understand how they process and react to challenges in their lives. I do believe that most parents do love their children and only want what is best for them and I believe that it is just as damaging to make blanket statements about parents as it is to make them about autistic people. I have seen a lot of posts from parents where they are bragging about the accomplishments of their children and I think the majority are trying to do the best that they can to raise a happy and healthy child. I know that a lot of them are at a loss though about what to do about certain challenges and I know so much of that would and could be remedied by talking with autistic adults. I don’t really understand how someone would get stuck in the notion that their child is not “able” like Alison Singer stated. I mean, of course, no one is able to do much of anything until they are taught or are old enough to figure it out on their own, but all human beings are teachable and you should always keep trying. Just because your child doesn’t walk by the age of 1 doesn’t mean that you give up parenting. How and why anyone would do that to their own child is just heartbreaking to me. I do have hope though that things are changing for the better. I see the numbers of people who are on group pages like ANCA and other self-advocacy groups and am grateful that they are at least being exposed to the information. A big concern is that the people that we see online are only a portion of the population that needs to be educated in order to really make some progress. Again, if only we had the exposure and reach of those with all of the money. It’s also disturbing to me that there are autistic adults who do have the money to make commercials and get better information out to the masses, but are choosing not to do so. I look at the work that Dana Commandatore is doing with Rethinking Autism and I wish so badly that everyone could see it. I can understand why parents would want a way to vent the frustrations of parenting and the camaraderie that might result with that, but I think there is a time to get past that and start living.

  6. adkyriolexy says:

    Yes, and to clarify, I’m not judging all parents. I am one, after all. But I am judging the autism-parenting culture and the “advocacy” organizations.

  7. Anne says:

    Hi there,
    I have 21 year old twins that are autistic. They dont really have friends, I feel so bad for them. My daughter was upset yesterday saying “I dont have any friends, I should be doing what other people do at my age, going to parties, etc… She refuses to go back to school because of being picked on and bullied. Her twin brother stayed in school and waited until after HS graduation to do all the classes he needed to take to go to college. He told me he didnt have the confidence because of the people who picked on him. He never told me that people picked on him, I felt terrible. Do any of you have suggestions of what my daughter might like as far as social events where she could make some friends?

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