It's that time again (Autism April)

[Eternal_Freedom]

It's most troubling when you consider that the majority of disabilities are "invisible" ones - visual impairments, hearing impairments, mental conditions like autism and so on. It's only physical disabilities that are distinctly visible, but there the problem is that someone in a wheelchair or a mobility scooter aren't always permanently disabled, they just broke their leg or are really fat and lazy or whatever.

This of course leads to tremendous problems with making buildings suitable for "disabled access" which apparently consists entirely of adding wheelchair ramps and a hearing aid system. Now, once again, that doesn't mean that adding those features is a bad thing, it's just that it doesn't cover everything.

People's reaction when I mention I'm disabled is always amusing. I almost filed complaints against the local Jobcentre worker when, during my new jobseeker's interview, he said "says here that you consider yourself disabled, is that right?" so I say yes. He says "really? doesn't look like it" in a joking manner, so I explain no, I really am disabled, would you like to see the registration card? He sits there looking like a fish out of water for a few minutes. If it hadn't been for how funny it was I'd have been seriously pissed off.

[Ahriman238]

It's most troubling when you consider that the majority of disabilities are "invisible" ones - visual impairments, hearing impairments, mental conditions like autism and so on. It's only physical disabilities that are distinctly visible, but there the problem is that someone in a wheelchair or a mobility scooter aren't always permanently disabled, they just broke their leg or are really fat and lazy or whatever.

This of course leads to tremendous problems with making buildings suitable for "disabled access" which apparently consists entirely of adding wheelchair ramps and a hearing aid system. Now, once again, that doesn't mean that adding those features is a bad thing, it's just that it doesn't cover everything.

People's reaction when I mention I'm disabled is always amusing. I almost filed complaints against the local Jobcentre worker when, during my new jobseeker's interview, he said "says here that you consider yourself disabled, is that right?" so I say yes. He says "really? doesn't look like it" in a joking manner, so I explain no, I really am disabled, would you like to see the registration card? He sits there looking like a fish out of water for a few minutes. If it hadn't been for how funny it was I'd have been seriously pissed off.

Favorite service dog story. A woman walks up to my fiancé and her niece, sitting at a mall bench with her service dog, Nimi, nearby. The woman walks up to my fiancé and, speaking loudly and clearly says "Are you..." stops and turns to the niece saying, in a normal voice this time, "Is she blind?"

Seriously though, her having a service dog is worth a lot to me in peace of mind. Nimrodel and her heir apparent Aragorn are signal alert dogs, meaning they cue to signals my fiancé may not recognize. For instance, she tends to either ignore fire alarms or meltdown when they go off, the dog can alert her when she doesn't notice the alarm and give her a reason to fight through the meltdown (which is comparatively rare but does happen) and get out. The dog will also drop into a lie down to prevent her from wandering into the street without checking for cars. We're also training Aragorn to climb into her lap or lean against her legs when she has a meltdown.

Some people dismiss her service dog as a therapy animal, which is so very untrue, but she benefits as though the dogs were. With her service dog in tow, she is more alert to her surroundings, more confident, more sociable and it is much harder to make her meltdown. Plus, people are more inclined to speak with her or accept weird behaviors when she has a service dog with her.

I can't say that all autistic people would get this benefit, one of my fiancé's particular interests is dogs, and she can read their moods and minds far better than mine. And service dogs are awfully expensive, a dog from a good breeder (don't want it to die after 3 years) temperament selected plus extensive training will easily run you seven to ten thousand dollars. There are organizations you can approach for funding or to provide service dogs, and a change jar at the local pet shop can do wonders. But just to further complicate things, the majority of organizations do not provide service dogs for adults, because everyone knows autism is a kid's thing, right? Worse there are a number of service dog organizations that are outright fraudulent, promising services they never train the dogs to provide, promising miracles to desperate families.

Two groups I can recommend without hesitation are 4Paws and Five Peaks German Shepherds, from which we got Aragorn two months ago. In general I suggest you do careful research on any organization you would consider having train or provide your service dog, and that extends especially to asking around the community, bad groups tend to pick up bad reputations.

Certainly it can be worse (and often is), but as someone who grew up with a disability I don't have an objective way of telling it was harder for me or my parents/brothers/friends etc.

But yeah stress is a big part of it. The trouble is that if someone sees a carer stressing out, they correctly assume that they've reached a limit and need a break. If someone sees a disabled person stressing out, it's brushed off as "it's just their (insert condition here)." Which it is, but not directly.

EDIT: Broomstick, please don't think I was disagreeing with you, I just wanted to raise that point anyway.

As I say, I'm an outsider looking in, but I've held my fiancé too many times while she cried, or screamed, or clawed at her own flesh to believe living with this is any easier than trying to help. She can't take a break from being who she is, but she can get away from all the crap in life sometimes for a while.

No, I didn't think that at all.

Your remark about perception is spot on, though - really, the biggest obstacle faced is often the attitudes of the non-disabled/non-caregiver society at large.

^

This. This to the Nth Power.

People are ignorant and cruel, sometimes even when they should really know better. A couple of days ago my fiancé was in the car with her mother driving, and her mom blocked someone from leaving a store parking lot to sit a bit closer to the traffic light. The other car honks, her mom displays the bird and a big guy gets out and starts walking slowly up to them. My fiancé, naturally, assumes Bad Things are about to happen and has an anxiety meltdown. This rouses her dog in the back of the car and, I don't know if it was seeing the car was full of women, seeing a woman in obvious distress, or seeing a big scary German Shepherd, but the guy turns around and gets back in his car.

Whereupon my fiancé's mother tears into her over the meltdown. There was no reason for it, you see, and she needs to stop playing the victim. And other crap she's been on about for years.

At least at her age when she has a meltdown in a public place, people don't offer parenting advice and/or condescension (well, much) I've heard I can't begin to count how many stories of caregivers of autistic children hearing that all they really need is a spanking.

[Eternal_Freedom]

The service dog issue is one I wholeheartedly agree on. As a result I count myself fortunate to live int he K where we have the Guide Dogs for the Blind group, who do truly excellent work. Even though I don't need one, it is reassuring to know that I can get help should I need it, and that others in worse situations than I can get help. Plus by sponsoring a trainee puppy I get cute pictures every month.

I have noticed of late a shift from signs saying "no dogs except guide dogs" to "no dogs except service/assistance dogs/animals" which I consider a good sign.

[Ahriman238]

Oh yeah, if a group says they do "tethering" go right ahead and cross them off your list.

[Eternal_Freedom]

I'm hesitant to ask but what is that?

[fordlltwm]

I'm guessing it's in reference to this...
http://www.servicedogcentral.org/content/node/80

Why anyone would think that tethering an autistic child to a dog is a good idea is beyond me.

[Eternal_Freedom]

Oh....

[Ahriman238]

I'm guessing it's in reference to this...
http://www.servicedogcentral.org/content/node/80

Why anyone would think that tethering an autistic child to a dog is a good idea is beyond me.

That's the one.

Ideally, and the worse organizations don't really provide, a service dog is selected from the litter for having a very even temperament, exposed to various things to normalize them (in particular, getting manhandled the way kids will) and then rigorously trained to high standards by experts. There's a reason they can ask for ten grand and maybe two years (as long as it takes a dog to stop growing) for the training. But at the end of the day, it is still a dog and other dogs in particular will react to it as a dog.


My fiancé would like to send through me that I was an idiot before regarding SIB, and a complete stranger intervening even to stop SIB is not going to end well.

[Ahriman238]

Despite the cosmic tragedy of parents murdering their own children, the leading cause of death in autistic children is drowning, hands down. Combine a tendency to wander off (which is far more terrifying than when your NT kid does it) and a common fascination with water and, well.

Several years ago, a child named Mason Allen Medlam wandered from his home and drowned. His mother, Sheila Medlam, creating the MAM foundation and the Mason Alert. A Mason Alert is similar to the amber alert for kidnapping and silver alert for Alzheimers. The idea is simple, you go down to the police station, get your picture taken and fill out a five-minute form. This form will include name, address, emergency contacts, verbal or non-verbal, what fascinates them, what hazards are near home/school/work, their most common reaction to stress (curl into a little ball, try and hide, scream, flee, attack etc.) and how to best approach them. The autistic person goes missing, you can cut through the red-tape needed for an amber alert and get all that information to officers right now, so they can start at the hazardous areas and work their way out.

This is actually a very clever system, one that could save hundreds of lives a year for virtually no cost. Yet to date our efforts to get it adopted at even the state level have not borne fruit. There are patchworks of individual communities that have opted for the Mason Alert, but we have a very long way to go to universal acceptance.

Some people equip their children or loved ones with GPS locator bracelets. If you want to try that, spring for one that's shockproof, waterproof, and has a panic button.

[Serafina]

If i may ask, what signals that your fiancé does not recognize does her service dog relay to her?

Edit: Looked up the general range on Service Dog Central, but would still be interested in a specific example, especially if there are things not mentioned on that website.

[madd0ct0r]

just wanted to say thanks for running this thread - it's useful background information and greatly appreciated.

[Ahriman238]

If i may ask, what signals that your fiancé does not recognize does her service dog relay to her?

Edit: Looked up the general range on Service Dog Central, but would still be interested in a specific example, especially if there are things not mentioned on that website.

As I say, mostly Nim alerts to fire alarms and 'oh, that's a curb' which sound like minor things but are worth a lot to me in peace of mind. She also howls upon hearing a fire/police/ambulance siren, but wasn't so much a planned or useful task as my fiancé trying to train her to howl on command. Aragorn will be able to alert to the timer on the stove too, but that's a tertiary concern after performing his legitimate job by making the world that much safer, and behaving himself in public.

[Ahriman238]

I've touched on this before, but another defining quality of autism is not really getting some of the finer social details. Things like a lot of gestures, facial expressions, body language, tone of voice, personal space and more. Autistic people frequently take things too literally when other people use metaphors and pop culture references.

Adding to this, there may be issues with "theory of mind" which can be hard to define. Essentially, theory of mind is the ability to recognize consciousness outside of yourself, to accept that other people have their own minds and don't always feel the way you feel or know everything that you know. Normally kids develop this at a very young age, towards the end of learning speech. In autistic people this realization may be delayed, may never occur, or may be noticed only on examination of your own thought processes but if you don't think about it you assume that other people's knowledge and opinions line up with your own. Why shouldn't other people know the way to your old school? You've walked it a couple thousand times and know every crack in the sidewalk. Don't people know how important it is to know the way to school?

My fiancé, if you're curious falls into the category of "has good theory of mind generally, sometimes slips up when tired or distracted."


But I wanted to talk about social awkwardness and the problems that can come of it. I've known at least one autistic person who simply assumed, as a default, that anyone speaking to him was being sarcastic or mocking, because he couldn't tell the difference by people's tone and in his experience that's how people generally treated him. Being autistic automatically makes you "the weird one" or "the creep" in any crowd. Autistics often have limited facial expression of their own, and sometimes speak in a monotone. They don't always engage well with their peers, rarely care for whatever the group is into, if as children they play with others it is usually highly imaginative, but highly repetitive, wanting to pretend the same scenario verbatim over and over again. Plus stimming, when autistics and ADD/ADHD rock or flap hands or play with some token just to distract themselves or help deal with things. Autistic kids are frequent victims of bullies, so are some adults.

Got a couple of cautionary tales. I promise, these are the last NAS videos. Until and unless I find others that are particularly relevant.






And to add a little ray of hope in what got sort of dark there, here's a TV program called "What would you do?" It's a hidden-camera program where actors play out a dilemma for people to react to, right or wrong, with careful consideration or leaping in, or even letting things slide, topped with a coda about the proper way to handle these situations. Scenarios like "people being blatantly racist in front of you" "baby (doll) trapped in a car on a hot day" "You see a guy at a bar spike a girl's drink while she's in the bathroom."

Sometimes people make you facepalm, but sometimes this show lends you a little faith in humanity. Even if they did work with Autism Speak on this one.

[Eternal_Freedom]

The facial recognition/body language stuff is something I really struggle with, but that's because I can't see well enough to pick it up. It's a really annoying problem.

[Ahriman238]

The facial recognition/body language stuff is something I really struggle with, but that's because I can't see well enough to pick it up. It's a really annoying problem.

It's formally called prosopagnosia, apparently there's an empathy exercise for the rest of us where we try and recognize faces, sans hair or any other clues, turned upside down. Every time I get a haircut, because I have to maintain a professional appearance there follows complaint (and half the time a meltdown) when my fiancé first realizes I cut my hair, then a week or so of being cold and distant as she slowly assimilates on a gut level the knowledge that I'm still me.

Autism has a high co-morbidity (meaning the traits are likely to coincide) with prosopagnosia. Also ADD/ADHD, dyslexia, dyscalculia, depression, bipolar, NVLD, OCD (of course!) sensory processing and anxiety disorders (naturally) seizures and Tourette's syndrome. Because life isn't hard enough with just autism. If you have autism, there is a greater likelihood, compared to the set [all of humanity] that you also have one or more of these conditions.

[Gandalf]

Just something I want to share in the spirit of the month.

Please don't use Rain Man as a descriptive term. I know that for a lot of people, they mean well, by saying that someone is really clever at a particular subject. However, it's also a horrific term of abuse by some people, and one of the few terms which actually gets under my skin. I don't want to tell people what they should and shouldn't do, but just be aware.

[Ahriman238]

Oh Valen, yes. Variations on robot, changeling and pod person should also probably be avoided.

As long as you brought up the movie, it has a magical power. Everyone who sees it immediately becomes an expert in autism. In particular, people see the part where Raymond is great at counting cards and wins big at blackjack and come to one of the following conclusions that no evidence will ever dislodge 1.) Autistic people are good at math 2.) Autistic people are good at blackjack 3.) every autistic person has some super-special talent, a thing they can do better than any of us mere mortals as if the heavens themselves were offering compensation for all the stress, anxiety and meltdowns. We call this last idea savantism or the savant myth.

It is true that there are autistic savants, because if you spend enough time obsessing over a topic or skill, learning everything about it, practicing endlessly, guess what? You can get pretty good at it. It does not follow, though, that every autistic person is a savant. Education still matters a great deal, as does the resources and leisure time to pursue one's interests. Plus, sometimes instead of developing a lifelong love of the piano or something, you become obsessed with pokemon, and outside the internet nobody is going to be terribly impressed by your ability to rattle off all the stats. Also, not all obsessions are lifelong, some last a few years or even just a couple of months, not enough time to become an expert, just enough to pass the time for a while. My fiancé went through a six month period of obsession with Doctor Who, she consumed all she could lay hands to, the old show and the new, asked for a bunch of DW merchandise for Christmas. After a while she ran out of episodes of the new show, her interest faded to indifference. Well, it was awesome while it lasted.

But savantism was in Rain Man, and if you autism on the news unaccompanied by the word 'epidemic' it's probably 'look at what this amazing autistic kid can do!" so people assume this is normal.

[Korto]

Oh Valen, yes. Variations on robot, changeling and pod person should also probably be avoided.

What about "a bit of an arse"?

If they're having their meltdown, SIB, whatever you want to call it (personally, I call it a bloody temper tantrum), just back off and leave them to it. If they're risking injuring themselves or others, you might have to step in, but only for real injury; not just they might scratch or bruise themselves. Better them than you anyway. Back off, give 'em some clear space, and it'll all blow over eventually.


It's getting the kid to appreciate that some behaviour is not approved of (eg, taking his school hat off every two steps and throwing it into some random person's yard on the way to school) that can be the most frustrating thing. Telling him, he might as well be stone deaf for all the effect it has; he finds being scolded amusing as hell; and you can't hit the little bastard. You're stuck with holding his hands restrained and frog-marching him all the way to school. That's the thing - while it's the same initial behaviour as you may expect from any child that age, with normal kids you can communicate that the behaviour is not acceptable.
Had a couple of cops stop alongside me on the way back after that incident, asking what it was about. Someone had seen the kid struggling, being forced along, and was a little concerned about it. Fair enough.

Sometimes it's like he thinks that if he stops one part of a routine, then he'll manage to stop the whole thing from happening. Like, if he hides the brush for 'Brush Brush', then there'll be no Brush Brush, and therefore no bed. Yeah, right. It doesn't work that way, kid, and I know where you put the brush.

[Purple]

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.

[Ahriman238]

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.

[Raw Shark]

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.

So hypothetically, what if two people both had what would've been called Asperger's up until the DSM-V. Are we talking about a 90% chance of getting a kid similar to themselves, or would that drive the probability of having a very, very autistic kid up?

[Ahriman238]

Sorry, computer shutdown.

Despite the best efforts of the community, a supermajority of couples that produce an autistic, or otherwise disabled, child split up, get divorced, whatever. There's a lot of stress involved in being a caretaker, a lot of guilt and though there shouldn't be, often a lot of blame. It wears you down, little things turn into huge crises, everything gets massively more complicated, and sooner or later come the fights because one of you hasn't slept in two days and the other makes what would normally be a minor mistake. And if your child is severe enough, there is a chance they will never get out of diapers, never be able to live on their own.

No, this is absolutely something you and your significant other should discuss. At length. Have a plan. Even if the plan is to give the child up, because as we've established, an uncomfortable number of these situations end in the cold-blooded murder of the child who "ruined" your lives.

There can be beauty and wonder in autism, it's true. My fiancé taught me over again how to appreciate the simple things, a spring day in the woods, the play of light over water, a spinning top. But there is a hefty toll to be paid to get close enough to see these things, in worry and stress. Not everyone is cut out for it.

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.

So hypothetically, what if two people both had what would've been called Asperger's up until the DSM-V. Are we talking about a 90% chance of getting a kid similar to themselves, or would that drive the probability of having a very, very autistic kid up?

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

[Purple]

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.

[Raw Shark]

[snip] Not everyone is cut out for it.

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.

So hypothetically, what if two people both had what would've been called Asperger's up until the DSM-V. Are we talking about a 90% chance of getting a kid similar to themselves, or would that drive the probability of having a very, very autistic kid up?

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

Good to know, thanks. Also, fuck...

[Eternal_Freedom]

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.