"My Daughter Is a Gift, But Her Autism Is Not"

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I understand, I have seen autistic advocates write things that are on the border of so-called 'parent bashing', and some people go way over the line. And for the record, that makes me sad. I think some autistic advocates have been traumatized in their childhood, by therapies (that might have been way more intrusive than floorplay) or by negative attitudes towards them. I also think nobody can truly understand parents of kids on the spectrum but parents of kids on the spectrum. But I've seen questionable things by activist NT parents as well. I agree no parent should be shamed because they're honest about their struggles.

Color me optimistic, but I consider that to be growing pains of the movement, much like any equal right movement goes through a period of extremism before it grows, things change and the hostility softens.

I do think they do more than combatting ABA, though. I'm not in the States, but I know that there is an autistic advocate in the White House, trying to shift funds from 'finding cure - programs' to 'providing accommodation-programs'.
I think that is huge. Not just the moneyshift, but the mindset-shift.

Also, the 'autism is a gift' thing, I don't see that coming from the neurodiversity movement at all. Those inspirational quotes with blurry landscape backgrounds usually come from other sources.

I think we're all pretty much agreeing here. Everybody wants their kids to be happy, everybody tries their best to make it so.

I completely agree with the author. I don't understand how someone can say that they don't want a cure for autism. I am all for promoting autism friendly workplaces, and accepting people with autism. I would do anything for a cure for my son, but since there isn't one I will try to make his life better. These things are not mutually exclusive.

I think that depends on how that hypothetical "someone" is experiencing autism. In my family, mild to moderate autistic-type behaviors are normal. We don't experience it as a disease that is destroying our lives or robbing anyone of their potential, any more than ANY person's challenges, whatever they may be, shape each individual. I know that isn't the same experience that some others may have, so that's why I don't expect everyone to feel the same way that I do about it. But I would also like that same consideration and not have people assuming that my child and others in my family are diseased and need curing.

I think for people who aren't feeling severely disabled (except when others TREAT them that way because they are different), then suggesting they are diseased and would benefit from a cure feels offensive in sort of the same way that it's offensive to suggest that homosexuality is a disease and to be pitied and "too bad there's no cure for that." But I understand that it's different for people who feel as though their, or their family-member's, disability is so profound that the autism is a completely negative thing. And I can't speak to that, or pretend to know what it's like to be in their shoes, so I won't make any assumptions about their experience.

But I also have experienced this attitude (desire for a cure) from people who just sort of think that the behavior is embarrassing and stigmatizing, and to me that's a problem-- because that's not something the kid or person with autism needs to be cured of-- it's something the culture needs to be cured of.

To me, it's a deeply personal issue. I can't speak for anyone else and I don't want anyone speaking for me. But for my own part, no, my son doesn't need to be "cured". His autism creates some big challenges but it also makes him extraordinary in ways that leave me breathless from love and pride and excitement about where life will take him. And I'm getting mighty sick of people who assume that it's all negative (for my son) because they are 100% wrong about that.

[And in case my tone is not coming across well in this post, I want to clarify that I'm not trying to lash out at Bkdad82-- I'm just trying to respond to the statement quoted, and explain how it's possible that someone might not be interested in a cure. I've been having a lot of communication FAILS lately so I trying to preemptively avoid that with this qualifier....]

I don't even understand this talk of "cure." A cure for autism has no concrete meaning in my mind because no one has identified precisely what biological component would be changed or altered or "fixed." I cannot imagine what people have in their minds when they talk about "cure," unless it's just a code word for "no more autism." It is like the words "soul" and "spiritual" to me — I can't get any sort of picture of it or even mentally put any words to it.

I guess they want autistic people to become like neurotypical people, but they don't say what kind of medical treatment or procedure they have in mind, maybe they are thinking of a pill to alter brain functions, maybe some series of injections over time that will gradually make an autistic person like a neurotypical person. I wonder if parents of lfa children think that some treatment would also cure their children of intellectual disability, because it seems that they would need a cure for both autism and intellectual disability if they want their lfa children to become normal and have normal lives, while hfa children would only need a cure for autism.

I can't put it any better than that.

I do not, by any means, take issue with parents seeking out therapies to help their kid function better or even better interface with a "network" that is not going to "use their operating system."

I DO take issue with "beneficial therapies" being defined by the professionals and chosen by the parents, with minimal to no input from the people they're supposed to benefit. I'm not talking about "I don't WANNA go to therapy today; I wanna play SuperSmashCartEX!! !" The answer to that one is almost always, "Get in the car or lose your video game privileges!!" I'm talking about the other, much more nefarious (and I don't know how common) situation that arises when, in the name of "fixing" them, we treat them like one of BF Skinner's rats and not a human being who can and does communicate (be that through words, sounds, or behaviors) and deserves to have what they communicate be taken into account.

"Accepting autism as part of human diversity" doesn't mean "Don't try to teach us to interface with a world designed to serve NTs." That's sort of about as smart as, IDK, not brushing your toddler's teeth because she doesn't like it.

But it does mean finding the ways that work best with, and for, each individual child-- in much the same way that I'd try different tooth pastes, different tooth brushes, different positions, different timings of 'brush-and-spit," and different ways of talking to my toddler until I found something that got her teeth brushed and didn't result in bitten fingers and bleeding gums. Tooth-brushing is simple and autism is complicated-- but I note that, although I've run through all the same tricks in an effort to have my kids keep their primary dentition, what's minimized the biting and bleeding until they're old enough to have the impulse control to "just do it, dammit" has been different for each kid.

It does mean not continuing with the therapy in the face of increased acting-out, overt misery, or maybe worst of all the quiet signs of a broken spirit simply because [scary robotic monotone] "this-is-the-best-therapy-for-correcting-autism-and-autism-is-bad." If my toddler consistently screams and flees when I call for "Saying 'Hi' to hygiene" every day for 10 days, I change what I'm doing. I don't persist because "the-dentist-said-to-do-it-like-this" or "this-worked-for-the-last-one" or whatever.

It does mean (and this is where neurodiversity really comes in) making "maximizing functioning" a higher goal than, and not synonymous with, "indistinguishable from NT." Whether it's the one with the overbite, the one who literally destroyed his top front incisors by running into things and all 8 primary molars by chewing rocks for a few weeks ('Peels nithe,' he said), the one with the crowded teeth, or the thumb-sucking toddler, the goal is "To arrive at adulthood with healthy, functioning teeth." The goal most emphatically IS NOT "To arrive at adulthood with perfectly straight, perfectly white, perfectly even teeth that are indistinguishable from the teeth on toothpaste commercials." Those two goals are easy to confuse, especially since "toothpaste commercial teeth" are THE IMAGE of dental health. But they're not the same thing, and may be mutually exclusive.

My 89-year-old grandmother's yellow underbite is certainly healthier than my 37-year-old teeth that a lot of people invested a lot of money into trying to make straight, white, and even. And they work better with an overbite than they did when they were mechanically forced to be straight and even (and don't cause headaches).

Autism is a fundamental part of who I am. If I got a cure, it would basically turn me into a completely different person. It would change my likes and dislikes, my interests, how I think and learn, my mannerisms, even my sexual orientation (I'm asexual, which is more common in autistic women).

For lower functioning people, it would change even more, because autism causes more pronounced effects on them.

To me, a cure for autism doesn't mean just 'make the things that are hard for me easier to do'. It means turning me into someone unrecognizably different from who I am. And while the person I'd become would still be a valuable and worthwhile person, they would not be me anymore.

Losing my identity is not worth being able to keep track of time, tolerate loud noises and get along easily with others.

Being female is less a part of who I am than being autistic, and I know people who find it easier to alter their body with hormones and surgery than to change their gender identity.

When people think of autism cure, are they thinking of a flowers for algernon kind of situation but with long-lasting results?

One of the new thoughts I need to bring to my understanding of a neurodiversity movement (I love the idea that because it's in its early stages, there is some extremism that might mellow out in the mainstream) and the tense discussion surrounding the word "cure" is that what I think autism looks like is just so not at all what other people see. I know, I know, the whole "if you've seen one..." but thing is, I really thought my child's autism, the rigidity, meltdowns, and self-injury was what it looks like for everyone. I've learned this week from meeting other parents that some children are SO SO different from mine. I have mentioned I'm uncomfortable with the word "cure" precisely because that does seem to imply changing someone to be someone they're not, but I'm learning that not all autistics seem to have OCD. If I could cure that part, heck yeah, I would! I thought it was synonymous with autism, it's not. And not all autistics scream for so many hours. I'd cure that, for sure! So I hear where the word "cure" as applied to autism is offensive to an extreme. I suppose we ought to prescribe any desire to "cure" a child to their particular behaviors that are causing them harm and distress. It can be hard not to see it as bashing from either side, and we have to be mindful of our words toward anyone. One thing that's hard from my side as a parent is that our focus is not necessarily on learning to articulate these thoughts. At least not yet. We're not sleeping perhaps, we're dealing with school districts and meltdowns, and it's a new world. That's certainly not meant for pity or anything, and we need to learn to articulate these things, it's just where we're coming from in the moment (me, where I'm coming from, and perhaps others) if we say "cure" and cause upset. I didn't know that the symptoms I'd like to improve are just individual symptoms and don't together equal autism. This is a difficult concept for me and others, I'm sure.

Why does your daughter scream for so many hours?
Is it some sensory stimuli bothering her?
Or does she start screaming for hours when she has a negative emotion?
What kind of concrete thing are thinking of when you say cure for screaming?

I am not certain about this particular situation, but my children screamed because:
a) They did not like the particular "situation" they were in and
b) They have learned that screaming changes that "situation"

I had to "train" my wife to not reward my children for screaming. My oldest daughter had fits, when she was quite young. And, initially, my wife became an enabler for those actions.

Interestingly, while my wife responded to the situation emotionally, I responded using pure logic.

FWIW, when I was younger, I was a terror (particularly when my Mom took me shopping). Eventually, she learned to stop doing that.

My child? i don't know why or I'd be working toward a solution with a better plan of action! Certainly, sensory issues and what appears to be OCD play major roles. I can make adjustments to sock seams, for instance, but I'd definitely be down with "curing" the pain?/itch?/discomfort? of her having feet. We're talking impossible, magical "cure" here, not some sort of harmful quackery. I can't imagine the neurodiverse rainbows and butterflies positive reason for having such sensitive feet that you'd rather scrape off your skin than stand. But what I get from all of this is that ... The screaming isn't every family's issue?! ! My mind is blown. So if there's no screaming, what's the problem with a different way of thinking??

Well, it really does depend on the child. Sometimes it is mainly social, where the child has mainly issues with interaction with others. You can have sensory issues without actually screaming; rigidity issues that don't present like OCD, etc.

The reason it is referred to as a spectrum is because while a diagnosis means by definition that a person has certain issues, the degree that the person is affected varies, as well as the resulting behavior.

Yep...you hit the nail on the head.

That's why it's called "The Autistic Spectrum."

With my kid, the Problem behavior is mostly an issue at school, where expectations for self-discipline are very high, even for kids who are not developmentally delayed or different. For my kid specifically, he has a high incidence of work refusal, he majes distracting noises, and he invades other kids' personal space. Staff is only tolerant of this kind of stuff to a certain point, and there is a lot of difficulty in that unlike having an obvious physical disability, many of these behaviors can look like wilful defiance. My son gets punished a lot at school for things he can't necessarily control, or not as easily as staff expects or assumes him to be able to. There is a lot of friction between me and staff as a result and recently we've come to an impasse. People don't really understand the different wiring and on some level they sort of just want him to "stop doing that." (Imagine someone tellig your kid exasperatedly to just "stop being so sensitive", because it's inconvenient). Our school's only alternative is to put him into full-time SPED class where "annoying" behaviors are par for the course, but his access to quality education (he is highly gifted) will go straight down the toilet. So it's a big problem. (We are going to start homeschooling next fall.)

Screaming for several hours a day is not common on autism spectrum.
Most autistic kids don't scream for hours a day.
Some do scream intermittently for seconds or minutes at a time, but I don't think that adds up to hours per day.
Based on kids I've met, the ones who scream do so when they are frustrated, but the screaming lasts only a few minutes before an adult can calm them down, or they just scream happily while playing, or it is involuntary, like a tic that comes out, but intermittently, not for hours a day.
There have been media reports of at least one kid who screams more than your daughter, e.g. the boy who had some vocal cord operation to reduce his involuntary screaming that prevented communication, and after he had the operation, he screamed less and spoke more.
Do you know if your daughter's screaming is based on some of the intentions that Rocket described, or do you think it is involuntary screaming completely out of her control?