What do you think of "Neurodiversity"?

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ND advocates include people who have learned to type ONCE they have ALREADY learned to type. They offer no suggestions for teaching this. In fact, they advocate against therapy because it's "abuse" (but suggest no alternatives). It's just supposed to magically happen I guess. But it doesn't for most.

Story time: When my eldest was young, people thought he was really smart. He was always very alert and innovative. People told me the social skills would come later. Einstein didn't talk until he was 6, don't ya know?! But then when he was evaluated for autism, the doctor told me he was severely mentally ret*d. So one minute he was really smart and then the next he was mentally retarded- the only thing that changed was the diagnosis. This didn't make sense to me. I thought if he was smart before he was diagnosed, he is still smart with the diagnosis, and we need to find out-of-the-box ways to teach him. This is why ND originally appealed to me. I thought that's what ND was about.

We have a ND group in our area and I went to meetings. They liked me. But as soon as they met my son (my eldest), they were telling me he was just mentally ret*d… just like the doctor said. They purport to be totally different, but they're actually not. My son doesn't fit the ND model, so rather than think the model might need tweaking, they kick him out. What a great system.
Check out this board for more examples of this mentality! I can think of 2 recent ones and I haven't even read all the posts on here lately!

I still don't believe my son is intellectually disabled. My younger son is and that's ok. There's nothing wrong with intellectually disabled people, but to call my eldest son intellectually disabled is inaccurate. I feel infinitely guilty about how we failed to find ways to teach him that worked for him. I needed help when he was young, but there wasn't any. The only "hope" open to me at the time was finding a cure, which I never believed in and still don't. The ND folks offered nothing- they just wanted him away from them so they wouldn't be associated with the "lesser types" like him. So here we are: no progress made and shunned by ND. While Autism Speaks still hasn't done anything for my son, they don't shun him either. Autism Speaks: 1, ND: 0. But it is definitely a sad state of affairs when Autism Speaks is the best option. I used to be completely anti-Autism-Speaks.

So you have a bad experience with a few 'neurodiversity' advocates, and then insist all neurodiversity advocates are exactly like them even when a neurodiversity advocate is talking to you and explicitly disagreeing with them?

Refer back to the questions posed. I'm answering those. These were my experiences. They were not positive. This is what I think.

Who is "explicitly disagreeing with them"? You? In your previous post, it seemed to me you were agreeing with them and telling me I was wrong to not agree with them and that I didn't understand them (no wonder, what with their superior intellects and all!). That's what I responded to. But if you do disagree with them, then good for you. It doesn't change my other experiences but I am glad some people have some sense. Maybe that will help future generations...

There is another thread on disorder vs condition that I think links to this discussion in certain ways.

There are some and I do mean some - people on the spectrum who really do want to restrict the club. I think it really is a horrible issue that I wish would not come up as often as it does on here.

For a bunch of people, who probably were ostracized or at minimum on the fringes of social functioning -there is a lot of exclusionary behavior. Maybe that is why---maybe people want to make up for it somehow by being clique controllers.

You want to be in the club? You need to be officially diagnosed. If you are too functional and managed to pass and make do with coping mechanisms you managed to cobble together, well, then, you are not disabled in any significant way and then your existence minimizes our struggles. You are a poseur.

You want to be in the club? You can't have too many issues because then you make us look bad. Behavioral problems? Eww, yuck. I have self-control, why can't you? You must have something else. Not smart enough (or people haven't figured out how to get past the communication issues to tap into the smarts? Well, then you have something else other than autism and you make us look bad.

I am pro-neurodiversity as a concept -- I don't know if people who run in those circles are more or less likely to hold to these beliefs or not. I don't run in any circles, so how would I know? I have seen all of the above thoughts expressed more than once on here.

Well said. I think that the debate often creates more division rather than solving any problems.

One should look at the question simply.

One should, in general, seek to enhance one's strengths, and lessen one's weaknesses.

Within an autism context, for all intents and purposes, a "cure" is impossible.

But there are treatments. And there are ways to ease symptoms.

Neurodiversity, to me, is the ability to discern that there are alternative ways to arrive at the same solution.

If an automobile engine is fixed--and the car runs another 100,000 miles, does it matter HOW it was fixed--whether through neurotypical or autistic methodologies?

Willie Mays, outfielder, caught balls a rather odd way (the basket catch). Other outfielders used two hands. Both caught the ball!

Autistic methodology/perception has lead to many great inventions; neurotypical methodology/perception has lead to great inventions. One could not exist with the other. One needs an DIVERSE environment in order to fulfill one's potential, and human potential.

"Neurodiversity" is like "feminism". People like the word or hate it depending largely upon how they define it, and their personal definitions vary widely.

Of course I disagree! Did you even bother to read what I said, or just project your image of neurodiversity advocates onto me?

You say ND advocates argue against therapy, implying that means you shouldn't help a nonverbal child communicate. I say that 'therapy' is defined overly broadly. Some actions are counted as 'therapy' which I think fall more under 'education'. Helping a nonverbal child communicate is education, not therapy, and I see no problem with it (as long as you aren't doing something abusive to do it). So if anyone has actually told you that they think you shouldn't try to help your nonverbal child communicate, then obviously I disagree with them.

As for the intellectually disabled issue, I explicitly referred to AAC users, many of whom are not intellectually disabled. I also pointed out that today's AAC users were yesterday's 'nonverbal kids with no really effective communication system' and therefore their insights should suggest something about how those kids experience the world. I also don't think being intellectually disabled is a bad thing, either. I think neurodiversity applies to all kinds of minds, and not just those that fit a certain mold.

It sort of reminds me of some arguments I'd had with people over feminism. There are two kinds of groups who call themselves 'feminist'. One group are people who believe that a) both sexes should be treated equally, and b) in many ways, women are treated as less valuable than men. That's the kind I am. The other group that calls itself 'feminist' agrees on point b), but thinks women are superior to men and we should have a matriarchy. One of the biggest frustrations for many in the first group is that non-feminists generally claim that all feminists fall into the second group. Even people whose beliefs align perfectly with the first group sometimes claim they're 'not a feminist' because they don't agree with the second group.

Neurodiversity does not belong to the aspie supremacists, and they are not truly neurodiversity advocates. Neurodiversity means diversity - any time you think any kind of mind is 'best', you are no longer advocating for neurodiversity.

As for Autism Speaks, I think the 4% of their budget that goes to helping autistic children doesn't make up for the much larger portion that goes towards teaching the public to hate us. And I suspect you'll find the services dry up once your kid reaches adulthood and is still not cured. But if you can get good help from a bad organization, more power to you.

Ummmm... my experience with "neurodiversity" advocates closely resembles WelcomeToHolland's. Right here on this board, I have seen people loudly proclaim that they cannot even "understand" what it is like to be a parent of a child with severe autism, and have seen people post that they are "nothing like that" (where "that" refers to an individual with severe autism). So, yeah... it's ironical that you would try to tell us how GRAND and welcoming and warm and fuzzy the ND movement is towards people who don't inhabit the higher functioning end of the spectrum.

Outside these forums, let's consider people like Ari Ne'eman, who loudly screams "NO CURE". This dude runs the Autism Self Advocacy Network whose mission appears to be to tell the whole world how absolutely GREAT autism is. He is RABIDLY anti-cure, and why would he want a cure when there is absolutely nothing outwardly wrong with him ? He and others like him wantonly project the utterly false impression that all autistics can walk, talk, go to college, make a living, have romantic partners, etc etc etc. Just try to get a word in edgewise that there are actually autistic adults who still wear diapers and who cannot speak one word and watch them get their bloomers into humongous bunches as they launch foaming-at-the-mouth rants about how these peoples' problem isn't autism but some unspeakable co-morbid disorder -- usually "intellectual disability" -- when autism, by it's very definition is a DISORDER of DEVELOPMENT, and for some unfortunately souls, this disorder is severe enough that development never happens -- EVER.

Secondly, what do these pro-ND, self-advocates actually DO to help families with severe autism ? Uh... that would be NOTHING. NADA. NOT A DAMNED THING. ZERO. ZILCH. Unless they are paid tutors or educators or baby sitters etc. But do they volunteer their time and energy to physically help a family struggling with severe autism in a positive, constructive way ? Absolutely NOT. Rather, ASAN and other vocal adults with autism take to Facebook and other social media to blame and shame parents and caregivers who express their honest thoughts and feelings of being overwhelmed and under-supported, and tell them that they are bad people for being unable to see how absolutely WONDERFUL and moonlight-and-roses, with liberal helpings of pink unicorns, this thing called "autism" is. They run off parents who dare so much as express how difficult life can be and accuse them of being "bad" parents. Again, what do they actually DO to help families ? And, again, uh... the answer is nnnnaaaaaathing. NAAAAAAAAAAAAAATHING. As WelcomeToHolland said, many can't even tell you or advise you on how to teach a non-verbal individual learn to type -- which is suspicious in and of itself, but I digress.

Ari and his fellow "self-advocates" can go pound sand, UNLESS they actually get off their wide asses and DO something more than run around screaming about "wonderful autism". Unless they volunteer some part of their day providing hands-on support to people with "SEVERE awesome autism", they need to shut up and do something else with their lives (and time). They also need to be HONEST and tell the world that autism isn't just about HFA. That there's also another end of the spectrum -- a dark and lonely place that most mortals would not care to inhabit. And they should be even more honest enough to allow people and families living in that desperate world to speak. They shouldn't try to shut them up and cry foul when a mother posts videos of her son's horrific rages and autistic meltdowns, claiming it intrudes on his son's "privacy" (when the reality is that they don't give jack squat about someone's privacy but are merely worried about how those videos will expose these "advocates" horrible lies about "wonderful, awesome autism").

Yeah, if the ND movement comprises individuals like Ari or the adult autistics I see on forums like the "Thinking Person's Guide to Autism", then I am no fan of that "movement".

Last edited by HisMom on 05 Jan 2016, 11:34 pm, edited 1 time in total.

This is stating the flaming obvious. A simple solution is to have a good chuckle/laugh at Aspies who claim to speak on behalf/for our children and claim that we (as parents) don't know what's best for our autistic children.

This OP is a sock puppet for a banned member (who wasn't a parent the week before he opened this SP account)

I think you are clearly not seeing those people for how they really are. I don't know how to argue with someone who's view of people who disagree is so severely distorted. Your depiction of those groups literally bears no resemblance to what I've read from those people themselves.

All I can recommend is that you get yourself some help.

Personally, neurodiversity and feminism equals nothing more than total bull and horsesh!t. I'm now more than convinced I'm better off without them! The only thing I ever got out of these groups are platitudes, and nothing else!

Show me actual evidence that Ari Ne'eman has claimed that a) all autistics are high functioning, or b) that LFA is autism with co-morbids. Because that sounds completely out of character for him and ASAN.



I think you're missing something pretty basic here. Autism is a disability. Autistic adults are disabled adults. Even if they're "high functioning", autistic adults are less likely to be employed, less likely to be living independently, more likely to live on social assistance or on very low wages, and the ones who are succeeding at those things are expending more effort than most people to do so. And if you think it's tough to get services for an LFA child, try getting services for an HFA adult. There is NOTHING! Maybe a couple "social skills" classes, but nothing for the other difficulties that HFA causes.

Given that most ND activists are disabled people, and that we are pretty much universally not getting enough assistance to care for their own needs, it's pretty tough for us to actually help out in a practical situation. Some of us still do - I've volunteered, one woman I know of was regularly calling other autistic adults to prompt them to do self-care tasks, some people have taken in homeless autistics, and so on. In fact, most ND activists probably devote a greater percentage of their resources to helping autistic people than Autism Speaks does. But our help amounts to less, because we tend to be among the lowest income bracket in society. It's like expecting beggars to help you. It doesn't take much resources to say "please stop demonizing us" - it takes a lot more resources to actually give practical help.

As for advice on learning to type, most of us are not speech language pathologists. Those of us who personally use AAC can only describe how it happened for us, and those of us who don't use AAC don't really have any expertise in that matter. I happen to know some stuff simply because AAC is an intense interest of mine, though, so I'll weigh in. Not so much on typing, which is kind of starting off the hard way - I recommend starting with picture-based communication and then teaching writing once they can already communicate.

Firstly, the most important piece is to presume competence. This means believing that your child has just as many and varied thoughts in his head as you do, and that he just needs the right kind of support to learn how to use AAC. Choose the least dangerous assumption - if he can't do it, trying hurts nothing, but if he can and you never try, he loses a great deal.

Second, be open to both high and low tech options, and don't assume that a child who can't do low tech isn't capable of high tech. Low tech options include picture cards (like PECS, but the PECS teaching method isn't that good), communication boards, and so forth. High tech options are speech generating devices, such as a tablet with an AAC app (some good options are Speak for Yourself, Cough Drop, Proloquo2Go and TalkTablet) or a dedicated device like a Dynavox. High tech options are more pricey (especially the dedicated devices), so it's a good idea to try low-tech first, but if low-tech doesn't work they might still be able to do high tech. (Some kids need the feedback of hearing the device say their words to make the connection, some need to be able to practice with the device when others aren't interacting, and some have visual processing issues that make a laminated picture hard to make out - there are a lot of reasons why high tech might work better.)

Third, pick an option with lots of core vocabulary. Core vocabulary means words like 'make', 'need', 'do', 'I', 'you', 'again', 'how', 'because', etc. (If you've ever seen the Dolch sight words lists, the first few grades are all core vocabulary.) There's a list of around 200-300 words that make up 90% of the words spoken in any situation, and a decent AAC system should provide quick access to all of them once you've learnt the system. This is the problem with PECS, as I described above - PECS focuses on 'fringe' words like the names of favourite foods and toys, which limits the child's ability to communicate in any context other than requesting. They end up with a vocabulary that looks more like a restaurant menu than real communication. While a few fringe words for things the child loves are a great way to get the kid motivated in the beginning, true communication requires core vocabulary.

Fourth, take into account motor planning. How well could you type if someone rearranged your keys on a regular basis? Similarly, it's a good idea to keep words as much as possible in the same place. If you're using velcro picture cards, put labels in the binder showing where they go, so the kid can learn which page to go to to get each word. And on a high tech device, look for one with room to grow without rearranging buttons. If the buttons are too small, try a keyguard or just hide buttons to leave dead space around the buttons the kid is learning first, so if they miss it nothing happens instead of them hitting the wrong button.

Those ideas were for picking the AAC device. Once you have it, then you have to teach the child to use it. First things first - don't tell them what to say, and never grab their hands to force them to say it! Those tactics teach the kid that the AAC device is for saying what you want, when it should be for saying what he wants. (This is another problem with PECS, by the way.) Also, where the kid goes, the device goes too. The only exception is situations where a high tech device can't work, like when he's swimming. (It's good to have a low tech option as well, for situations like that.)

The kid should be expected to learn the device two ways. First, by modelling. When you talk to the child, when you say a word that you want him to learn on his device, say it with his device as well as verbally. So for example if you say "do you want to go out for a walk?" you might point to 'go', 'out', 'want', etc. Start one word ahead of where the kid is at - if he's not communicating yet, model one-word statements, if he's using one-word statements, model two words, etc. This is how most kids learn to talk - for a kid who can't talk, this is the most natural way to learn an alternative. Don't just model requests, either. Comment on things, refuse things, ask for information, etc. A lot of autistic kids like requesting and rejecting the best, but that doesn't mean he won't learn the others.

Second, by playing with it. If the kid says something unintentionally with his device, don't ignore it! Act like he meant to say it, and respond. So if he said 'want', answer "what do you want?" or offer something you think he wants. If he said 'you', act like he called out to you. With a high tech device, kids can also learn when you don't have the energy to respond, because the device is responding. Depending on how well he understands speech, he could very well figure out how to say something with a high tech device just by touching the button accidentally and hearing the device say it.

As soon as meaningful AAC use starts to occur, you should start 'playing dumb' when he communicates in a more primitive way. For example, if he stands in front of the fridge whining, don't just offer him snacks until he accepts one. Ask him "what do you want?" and then wait. (You could model 'want', too.) If he's getting really frustrated, don't push the issue, but teach him that he gets it quicker if he asks with his device (or with words, if he's able to say a few words).

And give it time! Most kids hear speech for 12-18 months before they start speaking back. It can take just as long for a kid to learn AAC.

Lastly, if it's really not working, don't give up! Try some other type of AAC device.

[edit: just noticed from another post that your son is 3 years old. Which raises the question - why are you assuming he's severely autistic? You can't tell an autistic kid's future development when they're 3 years old! Temple Grandin was nonverbal at 3, now she's a public speaker with multiple degrees. It's pretty common for 'low functioning' 3 year olds to end up high functioning - probably more common than for them to stay low functioning.]

I think Hismom left this site over a year ago....