It's that time again (Autism April)

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Ahriman238
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Re: It's that time again (Autism April)

Post by Ahriman238 »

Purple wrote:
Ahriman238 wrote:
Purple wrote:Not sure how to ask this so here goes. How common is autism? As in, what are the chances that if I reproduce a potential child of mine might come down with it? I watched that terrifying video on page one on the first day you posted it and the question has not left me since.
In the US, the rate is now believed to be 1 in 68 people, so not even 2%. Though the actual rate is likely much higher, all the studies show serious regional skewing of numbers with reported/diagnosed cases vanishingly rare in rural areas, which almost certainly has more to do with people not getting diagnosed.

There is a strong genetic component, we do not believe it is the cause so much as some people are strongly, strongly, predisposed to it. If you or the other parent has autism, there is something on the order of a 90% likelihood your child will be autistic. Believe me, the fiancé and I have discussed that factoid at considerable length.
That sort of puts me at ease I guess. Since I am not even acquainted with anyone who is autistic I should be fine as long as I watch my dating habits. I know I am not supposed to react like this if I am to be seen as a decent person. But the thought of something like what was described in that video happening to me is more scary to me than the thought of being raped or murdered.
I very nearly reflex posted and said some rather unkind things, but what would be the point? Have I not said many times in this very thread that, though I wouldn't trade my life and my fiancé for anything, this life can be very hard and isn't for everyone? And I'd rather the people who couldn't hack it would admit as much up front and make other arrangements rather than be trapped stewing with a child they can't handle until they eventually explode?

I would not consider having a disabled child to be an injury on par with rape or murder, but I acknowledge you don't get much bigger in terms of life-changing events. If the very idea is so horrifying to you, you are probably not the best person to raise an autistic child, so I wish you well in your dating and avoidance of that fate.

I do, however, reserve the right to laugh if you do fall in love with someone with autism, and there can be so much to love. I'll still help however I can, with advice for the relationship and any possible offspring, but I will laugh first.
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Re: It's that time again (Autism April)

Post by Purple »

Ahriman238 wrote:I very nearly reflex posted and said some rather unkind things, but what would be the point?
If it means anything I would not have held it against you one bit if you had. Because I feel embarased for being afraid. If that makes any sense for you.
Have I not said many times in this very thread that, though I wouldn't trade my life and my fiancé for anything, this life can be very hard and isn't for everyone? And I'd rather the people who couldn't hack it would admit as much up front and make other arrangements rather than be trapped stewing with a child they can't handle until they eventually explode?
My main fear is present because I am the kind of person who would not have the heart to abandon an offspring of my blood no matter what and would end up destroying my self in the process or cracking eventually. So if it did happen to me I know for a fact that the worst possible outcome is the only possible one.
I would not consider having a disabled child to be an injury on par with rape or murder, but I acknowledge you don't get much bigger in terms of life-changing events. If the very idea is so horrifying to you, you are probably not the best person to raise an autistic child, so I wish you well in your dating and avoidance of that fate.
I am probably not the best person to raise a child at all. Probably. Hopefully I won't get to find out any time soon.
I do, however, reserve the right to laugh if you do fall in love with someone with autism, and there can be so much to love. I'll still help however I can, with advice for the relationship and any possible offspring, but I will laugh first.
I can imagine. I mean, aside from the really bad cases that the commercial described which scare me to hell most of the posts here describe just regular people with a bit of bad on the side that happens rarely.
It has become clear to me in the previous days that any attempts at reconciliation and explanation with the community here has failed. I have tried my best. I really have. I pored my heart out trying. But it was all for nothing.

You win. There, I have said it.

Now there is only one thing left to do. Let us see if I can sum up the strength needed to end things once and for all.
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Re: It's that time again (Autism April)

Post by Ahriman238 »

90% chance of having Autism Spectrum Disorder. The severity is a crapshoot, but then, it always has been.

Good to know, thanks. Also, fuck...
This is one thing greatly simplified by the DSM-IV and "it's all ASD now" I don't have to provide a short list of autistic conditions the kids may or may not get anymore. Autistic couples do sometimes produce neurotypical offspring, it happens.

Remind me sometime to have a good rant about the people who think all we need is some good ol' eugenic sterilization to take care of the "autism epidemic" once an' fer all.

Eternal_Freedom wrote:The trouble with saying "how common is autism" is that it's such a wide-ranging condition. The 1 in 68 figure Ahriman quoted may or may not include everyone who is somewhere on the big scale. Hell, I'm sure that if I went down to see the doctors they'd probably put me somewhere on the high-functioning end of the scale, since I do display a number of symptoms (for want of a better term).

The problem then comes with the mental disconnect that happens. You hear "1 in 68" and think "wow, that's surprisingly high" but then you don't see 1 in 68 people who are visibily and distinctly autistic, perhaps because they're having a good day, or because they are only mildly autistic or whatever. So then you start to doubt the 1 in 68 figure, or start to think that the mildly autistic aren't "really" autistic.

It's like the "not visibly disabled" problem I commented on earlier. And it is really annoying.
Pretty sure the 1/68 figure includes lots of high-functioning people who are not obviously autistic.

The largest single divide in the community is between people who think that if someone can speak and doesn't smear their own shit over the walls, they're not really autistic and high-functioning autistics who resent being lumped in with people who need full-time care and possibly institutionalization. To both groups I say "why can't we all just get the hell over ourselves?!?"

The threshold for autism is that these symptoms cause a serious negative impact on people's lives. I'm truly sorry if you have to deal with four meltdowns instead of forty minute ones, and I respect the hell out of you for being able to handle that at all, but you. Do. Not. get to dismiss other people's problems just because you feel yours are worse. Else we may as well give up on the community, and society in general, anyway. Do you have any idea, any idea at all, how hard it is to get any services, support or even sympathy for your very real and serious problems if you look, speak and for the most part act like you're neurotypical? Even from others in the community? People just assume that you're an adult and fully capable of handling everything life throws at you without help, well if you're autistic, you're not. That's the whole point, we don't diagnose people as autistic because they're a little quirky, we do it because they have serious problems and need help. Alright?

Nor am I particularly moved if you feel that autism is a part of your identity, and you hate the idea of people thinking of these "other" autistic people and thinking less of your capabilities. Again, you got the diagnosis because you have real problems, not because you're one of the 'cool' outsiders at the schoolyard. I get it, I truly do. I'm one of the 90s ADHD kids, and for years I agonized over the idea of taking the meds to stop failing at school, because I was afraid of losing my energy, my imagination and generally no longer being me. In my case, years of stressing amounted to very little, when I finally broke down all the meds were ineffective or had deleterious side-effects and had to be discontinued, and I eventually learned coping mechanisms to get by. But I do understand what it is to have something, even a problem, become so central to your identity without you even realizing it happened, to the point were you don't consider it a problem. but it is, however good your coping strategies there are things you cannot do as well as other people and self-delusion is an obstacle to dealing with it. And this is connected, profoundly to the severely autistic, so you are in no better place to dismiss them then their families are to ignore you.

It's called a spectrum disorder, people. There are roughly as many fine degrees of severity as there are people with it, we just have to sort things into three categories for convenience. Even then, I know people who seem to jump up and down a "level" depending on the sort of day they're having. Autism includes everyone, high-functioning and low, rich and poor, the whole point to the puzzle-piece ribbon and decals is to show how mysterious the condition is, and how diverse the people effected by it. Which makes it all too appropriate that Autism Speaks represents themselves with one puzzle piece in one color, as they want everything relating to autism to go through them. But that's a whole different rant, for the time being can we all just accept each other and move on?
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Re: It's that time again (Autism April)

Post by Ahriman238 »

My main fear is present because I am the kind of person who would not have the heart to abandon an offspring of my blood no matter what and would end up destroying my self in the process or cracking eventually. So if it did happen to me I know for a fact that the worst possible outcome is the only possible one.
I can respect that. If you're unwilling to abandon/abort any potential children it's a good idea in general to be careful about your dating and sex lives. I will note that things aren't always as bleak as Autism Speaks paints it, there is a community to support you and services you will need in that event.

I can imagine. I mean, aside from the really bad cases that the commercial described which scare me to hell most of the posts here describe just regular people with a bit of bad on the side that happens rarely.
Have we given you that impression? Sorry to mislead you. My fiancé has a meltdown at least every third day, sometimes eight or nine in a single day. She is constantly bewildered by other people, or startled by loud noises. One time we were walking down the sidewalk and the wind blew over this metal sign with a singularly loud bang. I look and look immediately back to my fiancé (well, girlfriend at the time) only she's thirty feet down the sidewalk and still running. I barely caught her before the curb, to this day I have no idea if she would have run into a busy street.

The 'bit of bad' may not always be obvious to people on the streets, but you can never completely forget that autism is there, or escape the tiny bit of worry because your loved one likes to go explore the marshes.
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Re: It's that time again (Autism April)

Post by Purple »

Ahriman238 wrote:Have we given you that impression? Sorry to mislead you. My fiancé has a meltdown at least every third day, sometimes eight or nine in a single day. She is constantly bewildered by other people, or startled by loud noises. One time we were walking down the sidewalk and the wind blew over this metal sign with a singularly loud bang. I look and look immediately back to my fiancé (well, girlfriend at the time) only she's thirty feet down the sidewalk and still running. I barely caught her before the curb, to this day I have no idea if she would have run into a busy street.

The 'bit of bad' may not always be obvious to people on the streets, but you can never completely forget that autism is there, or escape the tiny bit of worry because your loved one likes to go explore the marshes.
I was sort of trying to be nice for the sake of my own conscience more than anything.
Still that actually seems tolerable as it is miles ahead of what the commercial mentioned and which made me think of nazi eugenics propaganda more than anything.
It has become clear to me in the previous days that any attempts at reconciliation and explanation with the community here has failed. I have tried my best. I really have. I pored my heart out trying. But it was all for nothing.

You win. There, I have said it.

Now there is only one thing left to do. Let us see if I can sum up the strength needed to end things once and for all.
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Re: It's that time again (Autism April)

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Ahriman238 wrote:But I do understand what it is to have something, even a problem, become so central to your identity without you even realizing it happened, to the point were you don't consider it a problem. but it is, however good your coping strategies there are things you cannot do as well as other people and self-delusion is an obstacle to dealing with it.
I'm glad you mentioned this. It's something that frequently strikes me in my more contemplative moods. It's a particular problem for those who (like me) grew up with a disability rather than having it diagnosed later. I wouldn't say my disability is central to my identity but it is a major factor certainly. I always feel embarrassed and angry when people say to me "oh you cope with it so well." I've never known anything else so I can't compare my life to "normality." I never had a choice not to cope with it. Well, I could have buried my head in the sand and pretended it wasn't there but that isn't a viable option.

On a (related) note, do you think it would be easier to raise a disabled child (autistic, senosry impaired, whatever) if you already had one or more "normal" kids? That was the impression I had growing up, being the youngest of three and the only disabled child. Having older brothers around was a godsend, for both me and my parents. It gave my parents extra help (more importantly, extra help who intimately understood both me and my condition) and it gave me a pair of older brothers who I knew woudl always be able to help me and offer advice.
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Re: It's that time again (Autism April)

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Ahriman238 wrote:Do you have any idea, any idea at all, how hard it is to get any services, support or even sympathy for your very real and serious problems if you look, speak and for the most part act like you're neurotypical?
Yeah, actually, I do because my spouse's disability isn't obvious in many circumstances, but then that's how autism parallels other "invisible" disabilities.

The "support" agencies tend to have very rigid categories and a very binary approach. Either you fit their criteria and are disabled, or you don't and therefore there's nothing wrong with you. :roll:

Of course, that doesn't work with spectrum disorders (doesn't work all that well with some non-spectrum disorders, either, but let's not derail this). There isn't really a sharp cut-off, people shade from "perfectly normal" to "profoundly impaired". A LOT of neurotypical people can share traits with the autistic - we all know folks who are more sensitive than usual to loud noises, or aren't very socially adept, or have a somewhat obsessive hobby. As noted, though, those folks aren't impaired by those traits. The Loud Noise Sensitive neurotypical might startle or jump, but doesn't literally run off in a panic. Neurotypical But Socially Awkward Man can improve on that if he simply desires it and a does a little work, the autistic are battling not a tendency to introversion or less than perfect facial interpretation but a much more severe problem. The Biggest Lone Ranger Fan might have a basement full of collectibles and go to conventions and spend most of his free time and spare cash on the hobby, but he can put it away and go to work and carry on conversations about other topics. Comparisons like that can sometimes help folks relate to autistic people, but they can also get in the way of understanding.
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Re: It's that time again (Autism April)

Post by Eternal_Freedom »

Again, while it's not autism I had a similar experience in school with my eyesight. The UK has something called "Statements of special educational needs." If a student has one of those, the school gets support and funding from the local authority to provide help to the child. If you don't have such a statement you can still be "on the Special Needs list" but the school has no funding to help you, much the frustration of the SEN staff.

Myself and a half-dozen others with varying conditions were all on the list but didn't have statements (because our conditions weren't "severe" enough apparently), so the school as a whole was indifferent to helping us. Individual staff did what they could but there was nothing "official."

Just getting them to mark the edges of steps with white or yellow paint took four years. I (and my parents) repeatedly asked them to do this, and by the 3rd year I made the offer several times to dot he damn painting myself. Nothing happenned. Then, the next school year a new pupil had a Statement for a visual impairment and suddenly the step markings appeared overnight. Needless to say I was not particularly amused.
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Re: It's that time again (Autism April)

Post by Zaune »

Sounds familiar. I had a Statement up until Year 11. When I barely scraped through my GCSEs well enough to be accepted into A-Levels, someone decided I can't have been that badly impaired and I was basically cut loose. Though honestly I suspect that was the least of my problems at that point, because the school SEN program was kind of a joke and I had other problems that weren't diagnosed (or in fact noticed) until much later.
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Re: It's that time again (Autism April)

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"Ahriman, you don't like the Rain Man? But that movie was heartwarming and funny! What movies about autism do you like?"

Generally I watch movies as a form of escapism, not to wallow in my life, it doesn't help that there's like, half a dozen movies about autism with a plot and a few score of documentaries.

I'll recommend three.

Mozart and the Whale is a romantic, sort-of-comedy with autistic adults. They get a lot of the details right and show autistic adults living their lives, engaged in a relationship, normal people things that, as I say become so much more complicated.

Extremely loud and Incredibly Close I like for the opposite reason. The kid is obviously high-functioning autistic, formerly Asperger's, that was obvious long before he said it. And it is portrayed very realistically, the obsessiveness, the difficulty processing, weird anxieties and sensitivities. But it's not a story about autism, or life with autism or even dealing with grief while autistic, and the story would work just as well if he was a neurotypical boy.

Fly Away is a somewhat hellish, yet sadly normal week or so in the life of the single mom of a moderate-to-severe autistic girl. Nothing I have ever seen or heard has conveyed so well how it can wear you down, day after day with no hope of improvement, balancing caregiving and work. My one complaint is that the mom resists sending her daughter to a group home all the film before giving in, and then everything is wonderful, roll credits. It really doesn't work that way.


For documenatires, I like Loving Lamposts and Normal People Scare Me I've heard great things about United States of Autism but have never seen it.
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Re: It's that time again (Autism April)

Post by Brother-Captain Gaius »

The Bridge (US TV series, have not seen the Danish/Swedish original so can't comment on it) is also awesome. The story has nothing to do with autism, in fact autism is never even mentioned once, but one of the main characters is autistic and it's portrayed quite well.
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Re: It's that time again (Autism April)

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If we're talking TV too, both "Alphas" and "the Middle" did a really good job showing autism.

Stimming is the "stereotyped, repetitive motions" from the diagnostic criteria. Stimming can consist of: rocking, humming, hand flapping, bouncing, shifting weight from one foot to another rhythmically, repetivie verbal sounds (da da da da da) and other forms of "fidgeting." Stimming can be a comfort thing, something done unconsciously, and according to my fiancé can actually help her a lot when she's close to getting overstimulated.
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Re: It's that time again (Autism April)

Post by Ahriman238 »

Purple wrote:
Ahriman238 wrote:Have we given you that impression? Sorry to mislead you. My fiancé has a meltdown at least every third day, sometimes eight or nine in a single day. She is constantly bewildered by other people, or startled by loud noises. One time we were walking down the sidewalk and the wind blew over this metal sign with a singularly loud bang. I look and look immediately back to my fiancé (well, girlfriend at the time) only she's thirty feet down the sidewalk and still running. I barely caught her before the curb, to this day I have no idea if she would have run into a busy street.

The 'bit of bad' may not always be obvious to people on the streets, but you can never completely forget that autism is there, or escape the tiny bit of worry because your loved one likes to go explore the marshes.
I was sort of trying to be nice for the sake of my own conscience more than anything.
Still that actually seems tolerable as it is miles ahead of what the commercial mentioned and which made me think of nazi eugenics propaganda more than anything.
Autism Speaks is like that. Still, there are a great many autistics who are more severe than my fiancé. Includig some that are pretty much impossible to handle and probably won't be able to function in society as an adult.

The key is, and always has been early intervention. If you even suspect your child may be autistic, get them looked at ASAP, the younger you can start occupational, and often physical and speech, therapy, the better the odds are that your child will be able to speak and read and use fine motor skills like holding a fork or a pencil.

On a (related) note, do you think it would be easier to raise a disabled child (autistic, senosry impaired, whatever) if you already had one or more "normal" kids? That was the impression I had growing up, being the youngest of three and the only disabled child. Having older brothers around was a godsend, for both me and my parents. It gave my parents extra help (more importantly, extra help who intimately understood both me and my condition) and it gave me a pair of older brothers who I knew woudl always be able to help me and offer advice.
I imagine it would be, more people to share the load with. It's not an experience I have, and at the end of the day all I'm doing here is relating my own experiences and knowledge. I have heard of siblings of autistic kids (and I assume this applies to other disabilities) resenting that their younger sibling gets extra attention while they get extra responsibility.

Yeah, actually, I do because my spouse's disability isn't obvious in many circumstances, but then that's how autism parallels other "invisible" disabilities.

The "support" agencies tend to have very rigid categories and a very binary approach. Either you fit their criteria and are disabled, or you don't and therefore there's nothing wrong with you. :roll:
I know it. Every bureaucrat believes they're a medical expert. It's like they can't even see, or hear you explain, that the square pegs even exist so they're baffled when everything doesn't fit neatly. Then they find some reason to dismiss the confusing case out of hand.



I'm going to have to leave shortly, so I'll leave you another anecdote. I am a blockhead. There's a thing I do, reflexively, when my fiancé is stressing out, yelling or having a meltdown and it is incredibly counterproductive. What I do is speak in a very calm and level voice (which she can't properly recognize when distracted) and hold out my arms in what I believe to be a universal chill out/I'm unarmed/do you want a hug? calming gesture. Well my fiancé isn't that good with things like gestures and body language, but that one she remembers from a childhood of watching 'Law and Order' (and sometimes SVU. who lets their impressionable child watch SVU?). That's the thing people do right before they get beat up and/or murdered. So she decides that I'm afraid of her, or expect an imminent attack from her, or that I'm trapped in an abusive relationship (really she worries about that last bit more than is probably healthy) with her and this sets her off worse. Then, on the rare occasion I notice this before she does or if she cries out "Why are you doing that with your hands?" my first impulse again is to sit on my hands or shove them in my pockets before they cause more trouble and this only calls attention to them and usually makes her worse.

We've talked about this a lot, explained our positions very thoroughly and resolved to better. But everything happens again by reflex, like clockwork, This has happened a few hundred times, it'll happen thousands more if I can't learn to check that particular reaction.
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Re: It's that time again (Autism April)

Post by Ahriman238 »

Separation Anxiety is another thing common with autistic kids. If you've ever had a dog that treats you leaving them alone as the end of the world, and reacts when you come back like they'd thought you were gone forever, you've experienced this. After all, if you're both autistic and a child there's one or two people who can help you make sense of the world and help you when things get overstimulating. These people leaving you, even for just an hour can be very scary Thankfully most autistics eventually grow out of this as they get older, as they develop supports and coping strategies outside of their parents. A couple never do though, and I've heard tons of stories and complaints from parents who can't leave their child even long enough to use the toilet without a massive meltdown.
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Re: It's that time again (Autism April)

Post by Ahriman238 »

Coming up on the end of the month. Just a week and a half left.

Many autistics are non-verbal, they cannot speak. Others find speaking too long to be stressful or distracting. Some learn sign, and in recent years we've had the advent of AAC (Augmented Assistive Communication) technology. The most basic AAC device is called a PECS (Picture Exchange Communication System) where you carry a book or a pad full of labeled pictographs. Flip it open, point to a picture for a concept and with a big enough binder you can piece together sentences. My fiancé sometimes becomes nonverbal when stressed or scared, when we went on vacation last summer we improvised a PECS pad that attached to her belt loop, explaining who she was with contact information for myself, plus yes and no, I'm overstimulated, please help and so on.

She's also been known to prefer to go nonverbal, sometimes for days at a time.

She usually has a medical bracelet, little blue rubber band with pictographs for yes, no, help, medical held, food and water. They wear out surprisingly quickly. Luckily they're cheap.


But the best thing for her has been the ipad she got. There are a dozen PECS and text-to-speech programs available. A couple are crappy but most are not, even if the better ones are expensive. My personal favorite is Autismate, very customizable and user-friendly. TaptoTalk has worked well for us in the past even if it's very basic and we've heard great things about Proloquo2go.

Last year, determined to help out the community and stressed in general in her interactions with others, my fiancé decided to start a blog about autism, her service dog, campaigning for the Mason Alert, and where she would rate AAC programs on a ten-point scale. Not just plugging for her, but if you're interested you can find this here at Autismdoggirl.blogspot
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Re: It's that time again (Autism April)

Post by Dartzap »

The Department of Health has published Think Autism which reviews the impact of the Autism Act on services and what improvements still need to be made.
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Re: It's that time again (Autism April)

Post by Ahriman238 »

Very interesting. Thanks, Dartzap!
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Re: It's that time again (Autism April)

Post by Ahriman238 »

Another thing about having someone autistic in your life, thanatophobia: the fear of death. Someone important depends on you, which can be a great ego booster (though, if you need your ego constantly stroked, an autistic relationship is probably not for you) but the flip side is the terror of wondering what will happen to this person if someday you aren't there. Oh, you can prepare a will, make plans for someone to watch over them, but long quiet nights where you can't sleep that all seems a terribly thin shield against that black uncertainty. What if the people you arrange as caretakers can't hack it? How will it fly apart, with their parting ways and leaving your loved ones to the cruelties of the world, or in a fight, perhaps a bloody murder. I really do wonder if this is what parents go through. Well, there's nothing for it but to get through those nights and try not to peer too deeply into that particular abyss. At least it's given me great incentive to eat healthier and exercise. :wink:


Seriously, though. Some days (and nights!) I just feel so tired, so stressed, so overwhelmed. The woman I have loved for years is still, in so many ways, strange and alien to me. I worry for her constantly and it simply. has. no. end. Everything I struggle to do, I will have to do over again the next day. Every bit of ground I make, in understanding or even just making her environment cleaner and safer could be lost in an instant. You think you and your significant other have communication problems? Don't make me laugh. Let's not even talk about the emotional baggage involved in being a social pariah all your life, the weird kid, etc. Or the stunning lack of knowledge and insight sometimes shown to anything that doesn't directly relate to a previous or current interest. Remember the bit in Sherlock (it and the RDJ films are more great showings of autistic traits) where Sherlock doesn't know how many planets are in the solar system? Imagine finding a similar knowledge gap every few days. There are absolutely positive, beautiful things autism can bring into your life, but some days these sure seem like distant trifles. It's on those days that I really need the community. A sympathetic ear, a word of advice, or even just to be reminded that we're not alone in dealing with this. It means so much to me to have that support, a network of friends I will likely never meet in real life but without whom getting through the day would be that much tougher.

This is why this month and thread exist. This is why I strongly encourage everyone who has autism, or who has regular contact with autism to reach out to the community. Start a Wrongplanet account, read up on sensory toys or tricks for avoiding overstimulation. Hell just keep posting in this thread or PMing me. Just understand that you are never alone. You are one of a few million effected by autism and we look out for own. Limited by distance, sure, and finances, and a host of other logistical issues, but what help I can give over the web is yours. And in the end, I am just a very tiny part of a global community just as eager to embrace you and help anyway we can.
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Re: It's that time again (Autism April)

Post by madd0ct0r »

has there been much work looking at autism in developing countries? How best to help?
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Re: It's that time again (Autism April)

Post by Ahriman238 »

madd0ct0r wrote:has there been much work looking at autism in developing countries? How best to help?
That's a good question. Good enough that I don't really know the answer. In fact, I'm kicking myself for not giving the matter serious thought before.

I do know that rural areas tend not to mix with autism, that's where you get most of the stories of parents flipping out and murdering their kids. I imagine this trend does not improve, but I don't know of any organization trying for increased awareness or resources in those parts of the world. I'm hoping this is me being provincial and they do exist somewhere.



One thing autistics have been known to respond very positively too is snozelen, or controlled multisensory environment (MSE), therapy. In a special snozelen room, the lights are dimmed and there are a variety of soothing yet stimulating things. Bubble-tubes, fiber-optic bundles, flameless candles etc. There may be soft music or soothing sounds playing, there may be sensory items to touch, a wall of many textures. The operant point being that they control the room, how bright or dim the lights are, what gadgets are turned on or off. No judgment from the therapist. There aren't a ton of studies n the effectiveness of snozelen, but every autistic I've spoken too (who did this, obviously) very much enjoyed the experience and felt a lot calmer for the rest of the day.

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Re: It's that time again (Autism April)

Post by Broomstick »

If part of the problem of autism is problems with sensory input and processing it makes a lot of sense that being able to control that input would have a calming/positive effect.

I'm reminded about what Tempel Grandin had to say about her "squeeze machine", that it was like being hugged except that she was in complete control of the pressure and duration, not some other person.
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Re: It's that time again (Autism April)

Post by Zaune »

Can I suggest a good, inexpensive way to replicate some of that "snoozelen room"? A lot of media players come with a visualisation plugin of some sort; my personal favourite for this is either MilkDrop on Winamp or its open-source cousin ProjectM, which works in Qmmp and probably others. Run that through a cheap LCD projector, throw in a couple of cheap novelties like a plasma ball and a lava lamp -which are amazingly cheap on eBay- and the total cost should be under $200.
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Re: It's that time again (Autism April)

Post by Ahriman238 »

Not a problem with my fiancé, who likes her hugs rib-bendingly hard and long, and is only too happy to demonstrate "the right hugs." But yes, having control when you normally have so little over the stimuli in your life is gratifying, or so I understand.
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Re: It's that time again (Autism April)

Post by Raw Shark »

Ahriman238 wrote:One thing autistics have been known to respond very positively too is snozelen, or controlled multisensory environment (MSE), therapy. In a special snozelen room, the lights are dimmed and there are a variety of soothing yet stimulating things. Bubble-tubes, fiber-optic bundles, flameless candles etc. There may be soft music or soothing sounds playing, there may be sensory items to touch, a wall of many textures. The operant point being that they control the room, how bright or dim the lights are, what gadgets are turned on or off. No judgment from the therapist. There aren't a ton of studies n the effectiveness of snozelen, but every autistic I've spoken too (who did this, obviously) very much enjoyed the experience and felt a lot calmer for the rest of the day.
Not to sound stand-offish or whatever, but honestly, how many of you, given unlimited budget constraints, don't think that the above sounds at least kind of awesome? Especially if you can just take it or leave it by walking in or out of a room whenever you want? I'd invest kind of a lot into having that on-demand at home if I could.

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Re: It's that time again (Autism April)

Post by Eternal_Freedom »

So would I.

Incidentally, this does finally explain why the visual impairment charity's children centre had a bubble tube, a plasma ball and a few fibre optic bundles. I always thought they were neat, I didn't realise they served a purpose.
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