The Autism Thread

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Shirley
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The Autism Thread

Post by Shirley »

This should be a cheery one!

(I actually thought we already had one of these, but I couldn't find it.)

Anyway, this is pretty interesting. Apparently Jerry Seinfeld is on the spectrum. It's not clear from this if he has actually been diagnosed or if he's just self-assessing. Either way, it kind of makes sense, from what I know about him.

http://www.disabilityscoop.com/2014/11/ ... rum/19831/" onclick="window.open(this.href);return false;
Totally Kafkaesque
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Re: The Autism Thread

Post by bfj »

He's self assessing...and he should shut the fuck up.
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Re: The Autism Thread

Post by Johnny Carwash »

OK, I hope I don't come off as trying to hijack this thread, but this is going to bring forth a rant that I've been sitting on for a while.

Based on descriptions of autism and the (highly questionable) self-tests floating around the net, I'm probably "on the spectrum" as well. I refrain from running out and proclaiming myself to be "on the spectrum," though, out of respect for people who legitimately have autism.

I know we have a few people here with people with autism in their family, and from what I hear, it's a tremendous ordeal, both to those affected and their loved ones. It's an insult to them for people to declare themselves as "autistic" based on minor personality quirks in the hope of sounding "interesting." This isn't directed at Jerry Seinfeld, who in the article seems to minimize the autism talk, but more at the "hey, get this" tone of the article and others like it.

Here's where I'm coming from: I have OCD--real, actual, professionally-diagnosed OCD. At various points of my life it's nearly shut me down to the point that I've almost ceased to be a functional human being. I've learned to manage it to the point that I'm able to live what seems to others to be a mostly "normal" life, though I still face real challenges with many everyday things that others take for granted.

When I hear other people gleefully proclaim "I guess I have OCD lol!" because they're a little bit particular about one thing or another, it pisses me off to no end. My internal response is: No you don't. No you fucking don't. If you've ever experienced real OCD, you'd simply wish you didn't have it. You'd yearn for a "normal" life, and you'd know it wasn't something to toss out as a "fun" conversation piece.

Again, sorry for the possible derail, but wanted to share some thoughts that I've had brewing for a long while, and have found a place where I think I'm comfortable to share.
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Re: The Autism Thread

Post by bfj »

Well said. I don't want Jerry Seinfeld to be the face of autism. I don't want people to think that Autism is a "mindset" as he calls it. It is a disorder, that makes life difficult for children and adults and the people who love and care for them. Is that the case for EVERYONE with autism, of course not. But I want money to be dedicated to researching a cure or more resources dedicated to helping our kids get through school, get a job and live as independently as possible. I don't want someone thinking that autism=Seinfeld, because that isn't the truth. The same goes for not wanting people to equate autism with Rainman.

Let him raise money, lots of it. Other than that, he should shut the fuck up.

Thanks for sharing, Carwash. OCD is no joke and I have a very close friend who sounds similar to you. He struggles with it every day. Good luck.
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Re: The Autism Thread

Post by EdRomero »

Fuck celebrities. Sure, it's great if they raise money, but I've heard horror stories about celebs with kids on the spectrum. So instead I'll talk about my students. It can be extremely frustrating working with them but when you accomplish something, it's an incredible feeling. I can't even imagine the emotions parents go through. So here's one story. I'll try to post more later.

A 5th grader on the spectrum who hates gym games reluctantly joined a capture the flag game. He was overwhelmed by the rules and chaos but eventually understood it. I then set up a strategy where I ran for the flag and got all the defenders to chase me. So the first attempt, I did it and he sneaked right in as the other team chased me. When he came back with the flag, he had the biggest smile on his face and was giving high fives to everyone. The strategy worked 2 more times until the other team caught on, but he insisted we try again and again and he even suggested tweaking the strategy.
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Re: The Autism Thread

Post by Tom 1860 »

Working in education in one of the 10 most deprived areas of the UK has taught me one a few things about the diagnosis of ADS, ADHD, ADD and OCD... Mainly, that parents/carers of children whose lives are all financially dependent upon the state, learn very quickly about the diagnosis of such conditions and therefore receive a lot more financial support if their child/children are registered as being disabled. Just throwing it out there...
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Re: The Autism Thread

Post by brian »

What we need are more C-list celebrities like Jenny McCarthy convincing people to not get their kids vaccinated because of some pseudoscience that claims that vaccines cause autism. That'll be great.
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Re: The Autism Thread

Post by Shirley »

BFJ and Carwash bring up good points that I hadn't thought about in re Seinfeld. I suspect that people's views on the matter (self assessment, celebrity endorser, etc.) depend quite a bit on how the disorder has affected their lives. For us, my son is high-functioning, does well in school (with a lot of support), and should grow up to be a self-sufficient adult and that colors my view. I'm sure I see things differently from someone with a child who will likely always need a large support system and will never be self-sufficient.

I read this piece on Seinfeld by John Elder Robison - who himself was diagnosed as an adult. I liked his take a he did a good job of explaining some of my views on it. http://www.psychologytoday.com/blog/my- ... and-autism" onclick="window.open(this.href);return false;
Totally Kafkaesque
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Re: The Autism Thread

Post by bfj »

Autism Awareness Month or as I call it, life.
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Re: The Autism Thread

Post by DC47 »

Yeah, I vaguely remember what it was like B.A. (Before Autism).

I hope things are looking up for you and yours. PM if you want to chat, anytime.
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Re: The Autism Thread

Post by Johnnie »

But guys, #TwizzlerChallenge! Celebs are doing it. So should you!
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Re: The Autism Thread

Post by DaveInSeattle »

I talked with Shirley about his when he was out here, but not sure if I've mentioned this here. My GF has a 19 year old daughter, Kelsey, who is pretty seriously autistic. She lives full time in a group home, and is here every other friday night. Its been an eye-opener, to be sure. She's a great kid...but a handful. But I love how excited she gets over the simplest things. She loves walking up to the Drug Store on Friday evening, and buying a "baby" paper, and looking at markers/baby wipes/fish food. Always the same things.

This morning she was sooooooo excited about getting an Easter basket this morning. She didn't want to unpack it, she just carried it around with her all morning. It was awesome.
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Re: The Autism Thread

Post by DC47 »

There is this. In many ways, childhood is cool -- and it will never end.

My little one, who is now a physically not-so-little 5'7" and 120 pounds, was on the phone talking with another girl (also with serious cognitive impairments). My wife overheard her say "Mom says it's all just made-up by adults for little kids, but I think the easter bunny is really coming tonight." Our problem is that we don't want our daughter to be the target of jokes for being a believer, as she was last Christmas.

And lo-and-behold, tomorrow at 6am there will be eggs and baskets hidden all around the house and she will be with her older sister (who figured this stuff out at age 8, despite our heroic efforts at realism) as they run around, screaming with glee when they find a new treat. Perhaps it will be their last time to do this together, as the oldest will be off with the wind in June. So at least one of us is going to be a little teary.
Last edited by DC47 on Sat Apr 04, 2015 10:23 pm, edited 1 time in total.
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Re: The Autism Thread

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I can certainly relate to your trips to the drug store. Here, you win trips to a party store. This term is used here to describe liquor stores that also have snacks; liquor store may not even be a legally allowable store descriptor.

Several of our domestic contests offer this as a prize -- Good Behavior-Home (no hitting at home, especially yourself), Good Behavior-School (no hitting at school, even those boys), Math Club (10 questions, often about horses, candy, cooking, or baby animals), and the extra-special, all-encompassing The Points Game (e.g., points for shoe-tying, calling lefts and rights, music practice, and -- special for April -- seeing bunnies).

It takes from 7 to 14 daily wins to get a prize. As a result we have gone to a dozen different party stores, all over the region, in the past year. Only an alcoholic with a car and wanderlust knows more places to find liquor around here than I do. My daughter of course, is memorizing their closing times.

The favorite party store is the first one we went to, as it is closest to our home. Little did I know then that this would become such a thing with my daughter. It is also favored by the homeless who live by the river, as well as assorted drug dealers and prostitutes who cluster at the edge of the parking lot. SanCarlos, it's two blocks from where we had dinner; next time we can go hang out afterwards. Our status as regulars, earning a nod of recognition from the clerk who is always there at night. We learned quickly not to tell the parents of Allison's playmates that we go to this place; it changes my status in their eyes from Khaki-wearing Safe Dad to Rumpled Dubious Dad. But while that store is clearly the best, each party store is a unique, exotic paradises for my daughter, who loves candy, snack food, and carbonated drinks. Not primarily to eat it (though that's fun), but to curate her extensive collection. A party store is like a zoo to her. We typically stay 20 or 30 minutes, just wandering the aisles, looking at the exhibits. She can use her contest prizes for things other than party store trips, and has several other strong interests. For example, we have well over 100 mechanical pencils of various designs. We'd have more, but I toss some of the old ones and limit their intake to our household. I have become an expert mechanic, and maintain a shoe box of different leads and erasers. Sadly, there is no mechanical pencil monopoly to standardize things. But while mechanical pencils clearly rock, party stores are clearly her favorite place in this world.

But party stores are not any more of a favorite prize than those associated with the illustrious Nutrition Club and Exercise Club. Perhaps you've heard of them? Fourteen daily wins (eating 3 units of dairy products) in the first club scores you a trip to a restaurant of your choice, with anyone you choose, and ordering whatever you want (including junk food). Fourteen daily wins in the second gets you a cooking event with the much-treasured older sister. Tonight, we all enjoyed Cherry Crumble as a result of fourteen days of incredibly low-intensity exercise (essentially six sets of calisthenics or the cardio equivalent). Our daughter's associates may brush off the party store trips as nice but not amazing. But they are deeply envious of the prizes for both of these other clubs. They have to do extra math and some exercise too, per parental orders. And they get nothing for it! Certainly nothing like telling the whole family that they're having dinner where she wants to be tonight, or getting to cook with an awesome older sister (who even comes with a cool boyfriend now). Recently the older sister and boyfriend even dressed up and took Daughter #2 out to a fancy burger joint, and then to an ice cream parlor. Now that was the greatest prize ever.

The point in these spectacular Nutrition and Exercise Clubs isn't to excel, as you can no doubt tell. It's just to get Daughter #2 to consider nutrition and exercise as regular, daily things to think about. That's it. But that's a very steep hurdle for a girl like this. The Club aspect gives us a way to talk about this without it seeming to be nothing but nagging (though she often resists). In some Clubs, she only wins if we all hit our targets (e.g., Nutrition -- but we never lose if she hits her target), so we are all purportedly all in it together. After a rough year or two, it's coming along nicely. New clubs and contests, with special bonus prizes are created every few months. We even have a Super Star Contest for winning all contests in a particular day (which takes about 30 to 50 minutes, spread over the day). So, Constant Victory is our theme.

There are thousands of gold stars in this girl's future (literally -- I buy them in packs of 500). I hope to be here to put a goodly number on the calendar. Both sadly and happily, it's unlikely she'll ever out-grow this, even if some day she's dying Easter eggs for little kids other than herself to find down at the Y or the family shelter.
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Re: The Autism Thread

Post by DaveInSeattle »

That's really interesting about the mechanical pencils. Kelsey totally fixates on Markers. All kinds of markers. But she never wants to use them herself. She just wants to carry them around with her. She's got a closet full of them, and for every "gift-giving" type of thing (birthday, christmas, etc), she always gets markers, and she's always super excited about them.

And she also loves 2 parts of the paper..the sports page, and the food ad inserts. Sometimes she'll get one of her markers, and one of the sections of newspapers, and want one of us to write something...always the same things...something like "Use your eyes with Robin's purple shirts". Or "the Mailman hasn't come yet, but he'll come later".

I've learned a ton in the few months since I've moved in here, and have really had my eyes opened.
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Re: The Autism Thread

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Daughter #2 has long worshiped at the alter of markers. All types interest her, but a special place is held out for erasable white board markers. We have many dozens. The dry up before they are used up. That's partly because she rarely uses them now, though she has (no surprise) many white boards of various types. But when they are 'old' they need replacing.

I was trained by my Depression Child mother to be insanely frugal. So this is a direct challenge to my sanity. As you probably know, whiteboard markers aren't as cheap as the standard type. When the ones we use on the white board on the refrigerator (set up for my daughter's pleasure, but actually useful) dry up, I attach them to string and spin them so the centrifugal (centripetal?) force moves the ink to the tip. That restores a bit of function for awhile, and then I use them until they're too faint to read.

So we make an odd pair -- the marker acquiring girl who won't use them, and the marker mechanic dad who can't stand to see them passively go to waste. It's not clear who is crazier.

In an attempt to compromise, I buy markers, but I'm pretty restrictive of new marker purchases. Typically I'll agree to buy them, but they go into Dad's Store. They're not hers until she wins them, one at a time, in one of the Clubs and Contests above. I only rarely let her use her own money, earned from chores, on this. And of course there are birthdays and holiday gifts. So I can only stem the tide, not stop it.

Marker Culture here is quite complex. An important part is marker mobility. This involves a canvass bag loaded with a small selection of markers, some workbooks (e.g., math, reading), a notebook (for lists), and a small whiteboard. This is often taken on any car trip of more than 10 minutes duration. Definitely helps get us down the road on vacations that require long drives or plane flights.

We don't have any obsessive phrases to write. But we certainly have lists. Favorites, kids in various classes, movies, cars. And D#2 loves to fill in forms. The subscription cards from magazines are good for a few minutes of fun.

Daughter #2 has certainly opened up my world in a variety of ways. I'm not denying the pain; there is plenty. And it will get worse as she becomes an adult in the eyes of the world. But I'm no doubt a more interested and interesting person as a result of her personality. I'm certainly more open to differences, make fewer assumptions about people, and I'm more empathetic. She and I are in it for the long haul, together. It's not what I'd wish for, either for her or for me and my wife. But she's a very fine companion.
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Re: The Autism Thread

Post by wlu_lax6 »

I thought this was very interesting
http://www.businessinsider.com/microsof ... ism-2015-4" onclick="window.open(this.href);return false;

However, this came days after this.
http://www.seattletimes.com/business/mi ... some-here/" onclick="window.open(this.href);return false;

Nice program by Microsoft but hiring programs announced days after layoffs is sort of b.s.
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Re: The Autism Thread

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wlu_lax6 wrote:I thought this was very interesting
http://www.businessinsider.com/microsof ... ism-2015-4" onclick="window.open(this.href);return false;

However, this came days after this.
http://www.seattletimes.com/business/mi ... some-here/" onclick="window.open(this.href);return false;

Nice program by Microsoft but hiring programs announced days after layoffs is sort of b.s.
There at a lot of companies realizing the potential in the high functioning autism workforce. The rate of employment for those with autism after leaving school is frighteningly low.
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Re: The Autism Thread

Post by Shirley »

wlu_lax6 wrote:I thought this was very interesting
http://www.businessinsider.com/microsof ... ism-2015-4" onclick="window.open(this.href);return false;

However, this came days after this.
http://www.seattletimes.com/business/mi ... some-here/" onclick="window.open(this.href);return false;

Nice program by Microsoft but hiring programs announced days after layoffs is sort of b.s.
Those layoffs were announced more like a year ago. I think this was the last group of something like 18,000, mostly Nokia folks.

But yeah, it's great to see a big company like that actively planning to hire autistic workers. I have no doubt MS already employs quite a few Aspies.
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Re: The Autism Thread

Post by wlu_lax6 »

Shirley wrote:
wlu_lax6 wrote:I thought this was very interesting
http://www.businessinsider.com/microsof ... ism-2015-4" onclick="window.open(this.href);return false;

However, this came days after this.
http://www.seattletimes.com/business/mi ... some-here/" onclick="window.open(this.href);return false;

Nice program by Microsoft but hiring programs announced days after layoffs is sort of b.s.
Those layoffs were announced more like a year ago. I think this was the last group of something like 18,000, mostly Nokia folks.

But yeah, it's great to see a big company like that actively planning to hire autistic workers. I have no doubt MS already employs quite a few Aspies.
The last few rounds hit all over the organization.
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Re: The Autism Thread

Post by bfj »

Shirley wrote:But yeah, it's great to see a big company like that actively planning to hire autistic workers. I have no doubt MS already employs quite a few Aspies.
Whether they self identify or not!
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Re: The Autism Thread

Post by DC47 »

I hear they're having the staff who are not on the spectrum wear armbands, as this will save them money compared to the opposite approach.
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Re: The Autism Thread

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DC47 wrote:I hear they're having the staff who are not on the spectrum wear armbands, as this will save them money compared to the opposite approach.
I get jokes. Well played.
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Re: The Autism Thread

Post by bfj »

United Airlines has a 15 year old girl with Autism removed from a plane.

http://www.cbsnews.com/news/autistic-gi ... cy-landing
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Re: The Autism Thread

Post by DC47 »

I suppose I'd have to see the video to be sure. But it's very hard for me to imagine that this girl posed a safety risk to this flight. And it's pretty easy to imagine that the flight crew is under-trained in dealing with kids with autism or other emotional issues. If a parent calmly explained her diagnosis and requested assistance with food selection, it was foolish to stand on policy. Then again, perhaps the flight crew does not have the power to bend rules in this regards.

In any event, I reserve the right to hate United Airlines as long as I'm alive. Perhaps it's just my mood.

Tonight was to be a big evening for my youngest daughter. Despite having little ability to either sing or play a flute, she is in her middle school choir and band. We greatly appreciate the patience of the leaders of these groups. Tonight was the big end-of-year concert for band and choir. Daughter #2 was very excited to be part of it all.

Her behavior at the event was not perfect. She was in the front line of the choir, but never looked up from her shoes. Then while other groups performed, she found reasons (e.t., re-tying her tie) to leave her seat several times and move up and down the aisle, causing a mild disruption each time.

Just before her band was to take the stage she came running back to where we were sitting. She had lost a piece of her flute. So three family members got on their hands and knees and moved among scattered attendees over 10 rows of seats to look for a dime-sized silver end cap.

No luck. Daughter#2 was distraught. Even though her older sister, an accomplished musician, told her that the end-cap was only necessary when changing tuning, and that she'd be fine without it. But if you know autism, you know that a flute without an end-cap is pretty much the worst thing in the world.

We got her on stage just in time, and she played with misty eyes. A year ago she would have slugged me, started screaming, and we would have had to leave. So this is improvement. A big one actually. But it was a shame that from her point of view, her Big Concert was spoiled.

After the crowd left, we looked for another ten minutes for the end cap. Still no luck. When we got home we ordered the part via the internet, so Daughter #2 could see that the situation would be resolved. But it was still hard to get her calmed down and to bed.

So, yeah, fuck United Airlines. And sue them back into bankruptcy.
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Re: The Autism Thread

Post by howard »

Just started reading this. Eye opening.

Image
Who knows? Maybe, you were kidnapped, tied up, taken away and held for ransom.

Those days are gone forever
Over a long time ago
Oh yeah…
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Re: The Autism Thread

Post by DC47 »

Temple Grandin is a truly remarkable person. When I first learned about her, I was struck dumb. She is a person like none I have ever met.

However, her example is also a bit dangerous for those of us with kids who have more than very modest forms of autism. She clearly deals with some serious impairments. Yet she is also quite gifted in other ways. She makes her own way in the world. But some large percentage of autistic kids, especially those with very low IQs, will never be able to live on their own. The everyday world will be an extremely dangerous and threatening place for them. Happiness, even in basic elements of life, will be hard to come by.

Those of us who love these kids have an increasingly clear picture of their future as they get older. For many of us, it is chilling. There is no solution to this problem. And this fact will affect everything we do or think of doing, for the rest of our lives.
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Re: The Autism Thread

Post by howard »

DC47 wrote:Temple Grandin is a truly remarkable person. When I first learned about her, I was struck dumb. She is a person like none I have ever met.
About five years ago I saw her on cspan, and I had a similar reaction.
However, her example is also a bit dangerous for those of us with kids who have more than very modest forms of autism.
I anticipated a response along these lines from one of the parents. Well, from you, since everyone else goes to bed earlier than us.[/quote]

I am in awe of you parents.
Who knows? Maybe, you were kidnapped, tied up, taken away and held for ransom.

Those days are gone forever
Over a long time ago
Oh yeah…
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Re: The Autism Thread

Post by DC47 »

I think it's a plain fact that for many adversity draws out something, if not the best, at least better than might have been. Any form of adversity. Being the parent of a kid with some form of impairment is certainly adversity. Autism in all but it's mild version is a wicked form.

My wife talk about how we've been changed for the better all the time. Tonight in fact. We discussed how we were more patient with others in all walks of life, because we now more aware that so many are dealing with at least some mild form of emotional or cognitive impairment. Though this was just before the melt down. After that we weren't so philosophical. Just running our disaster-aversion drill.

But we didn't volunteer for this.

The very odd thing is that there are those who do. We know two parents who have adopted kids who, though not autistic, are highly impaired in other ways. At least as impaired as our daughter. One of the parents is a single mother. The other case is a couple, one of whom is studying to be a nurse in her 40s. She and her husband are hispanic, and have adopted two black kids, one of whom is far more impaired than our daughter. They are dealing with a multiple of our problems with impairment, and then adding a layer of racial issues over the top.

When I come back from either of those two houses, I am the one in awe. They chose this parenting path. And they chose situations that they knew in advance would be far harder than the one we deal with. Put simply, I would never, ever have done what they did. I'm not even sure we are on different rungs of a ladder; they are most likely on one that reaches many times higher in the sky than mine.

When I hear about the various heroes that pop up from time to time in our culture, I always think of these three parents. The people in the news are certainly heroes. But these people are too, and in many ways they are much more heroic because they chose the burdens they carry.
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Re: The Autism Thread

Post by A_B »

Re: the flight thing...I think the mom might have been a big part of the problem...she admits saying "How about we wait for her to have a meltdown and then she is crying and tries to scratch -- and then you'll want to help her," after being denied the hot meal. If that's what she was willing to tell the news, what she really said may have been much more aggressive and disruptive.

Not really an excuse to make that landing given the information we have right now, for sure, though.
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Re: The Autism Thread

Post by DC47 »

Parents of impaired kids are not selected for saintliness. Or even niceness. It's a random thing. Some are jerks. Or made to be jerks by being under a fairly extreme form of pressure.

So, yeah, sure -- I can imagine a parent being part of the problem. But that quote doesn't strike me as particularly extreme. It seems to me that she was trying to tell the flight attendant what the real-world options were, in case it wasn't clear what was going on.

The thing I question, with next to zero information, is how the parents got in that situation in the first place. Autistic kids are notoriously picky eaters, and are notorious for throwing fits. A 15 year old can thrown quite a fit. My youngest is now 14, and weighs about 110 pounds. As recently as last winter my upper arms would typically have several yellowing bruises where I blocked her blows. Having a teen throw a fit on a plane is certainly one of the seven rings of hell. Many people tolerate babies crying. Few will gracefully tolerate teens screaming in close proximity.

So I wonder why the parents got on that plane with no food plan? Maybe they had a plan but it didn't work. It could be that their daughter rejected something she ordinarily would eat. Or that they had been accommodated on previous flights with first-class food. Obviously it's hard to get on a flight with your own food these days. But autistic kids often have some kinds of convenient foods that they like that comes in a sealed container. For example, protein or granola bars. Candy of some type. Or you can sneak something on board. In our family we never travel without a food plan. If nothing else, it provides some entertainment, which is vital on any trip more than 5 minutes with many autistic kids.
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Re: The Autism Thread

Post by Shirley »

AB and DC both voiced my thoughts on the matter. Both sides - parents and airline - handled this very poorly. Like AB said, I suspect the full quote - and probably many others not given to the media - were harsher and possibly more threatening.

We all need to learn to be more tolerant of differences around us, but you can't force that on people in the middle of a flight.
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Re: The Autism Thread

Post by sancarlos »

Shirley wrote:AB and DC both voiced my thoughts on the matter. Both sides - parents and airline - handled this very poorly. Like AB said, I suspect the full quote - and probably many others not given to the media - were harsher and possibly more threatening.

We all need to learn to be more tolerant of differences around us, but you can't force that on people in the middle of a flight.
Shirley, and DC, and BFJ - I really feel for you, what you go through. It's things like you dealing with this (on the positive side) (and people like Donald Trump on the negative side) that make me hope there really is an afterlife where people are rewarded for heroism and punished for douchebaggery.

Back to the plane flight - I echo Dave's remarks about the need for all of us to learn to be more tolerant. But, unfortunately that often only comes through experience. I remember when I was young and childless, and when a baby cried on an airplane I might make a snarky, bitchy comment about it to my seatmate. That behavior stopped by me immediately after I had my own baby on airplanes and learned to appreciate tolerance from others. So, I can imaging the multiplied effect of, as DC mentioned, people on a plane who don't understand anything about the challenges of autism!
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Re: The Autism Thread

Post by Shirley »

There's no question I would be WAY more tolerant of a kid (or young adult) melting down on a plane than I would have before my experience with autism. Now I would instinctively assume some sort of behavioral condition and would feel pity for the child and parents. And then I'd turn on my noise-cancelling headphones.


That said, my personal experience with autism, while profound, is really nothing like what others, like DC and BFJ, go through. My son needs assistance here and there, but with proper shepherding, he is pretty close to a normal kid. In fact, way better than "normal" in many ways. I really tip my hat to all parents of autistic kids, while realizing that many have it much, much harder than others.
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Re: The Autism Thread

Post by BSF21 »

Shirley wrote: We all need to learn to be more tolerant of differences around us, but you can't force that on people in the middle of a flight.
I think this sums it up perfectly. I see both sides. I've talked about my 11 year old cousin before (who I got to see this weekend) and she has made little to no progress over the last several years. Still mostly non-verbal, has no awareness of her actions or the impact on those around her. My heart breaks for her and her family. I wouldn't wish it on anyone. With the lack of knowledge about the disease/disorder in general, I'd be lying if I told you it has not weighed on my wishes regarding my own children in the future. It's unfair to treat anyone with these problems differently, and in a perfect world we would have a way to make it easy on everyone. However, I can understand the decision to land the plane. An out of control human being is just that, regardless of what got them to that point, be it disorder or mental illness or intoxication or any host of other reasons. You can't look at the underlying cause and judge, you have to take what is there in front of you and deal with the situation. I believe I'm more sympathetic to than most (obviously not all) to those afflicted with Autism, but if I'm a passenger or maybe even that child's parent, I know landing the plane and dealing with the situation at hand is probably the best course of action.

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Re: The Autism Thread

Post by bfj »

Mom had a food plan. Daughter refused her dinner at the airport pre-flight. She also refused her snacks that mom had brought. She wanted the sandwich they had ordered to be warmed up, that was refused. She asked for some salty snacks for her daughter and was told there were none. When the daughter was finally given her bowl of warm rice, she was fine. She never melted down, she never had a tantrum. The captain never came out of the cockpit to assess the situation. Many other passengers gave statements that stated that the child never acted out or hurt anyone.

Mom was letting the attendant what WAS going to happen. She was being honest and up front. Sorry if the stew didn't like the way she put it. The staff needed to be flexible and work with the mom instead of digging their heels in and having to be right. It would have taken two minutes to grab a bowl of rice for this kid and all of this would have been avoided.

I train police officers, hospital staff, teachers, librarians and the list goes on. I beg for flexibility from people. That is what is needed when dealing with the growing population of people with Autism. The airline is to blame for not training their staff. Hopefully they learn from this.
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Re: The Autism Thread

Post by sancarlos »

Question - is there any consensus of medical opinion on the most likely reason that the frequency of autism is increasing? If not consensus, are there any commonly held thoughts on why?
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Re: The Autism Thread

Post by DC47 »

If this is the entire picture, then this is a sad, sad story. I have of course witnessed people being unreceptive to kids with autism. But it still surprises me that a service business like this has such clueless staff.

I suppose there are two big positives in this story. First, United and other airlines will no doubt have to do a better job of training their staff. Second, the family in this story will get some relief. Any family with a seriously autistic kid is going to face considerable financial needs, now and especially in the future. The lawsuit settlement should help out quite a bit.

Where can I read more of a factual nature on this case? Every detail interests me, as this so easily could be our story.

I'm not surprised that the mother had the food angle pretty well covered, despite the reported problems. The best made plans can be so easily torpedoed by any kid, and certainly an assertive autistic kid. We've always had plans with back-ups to the back-up plans when we have gotten on a plane (which is as infrequently as possible). We also isolate our daughter from the other passengers as much as possible. We taught her that the window seat is the primo location; I take the middle seat next to her. Even better, we sit together on a two-seat-on-one-side-of-the-aisle configuration. As she gets older, and more self-controlled, we have started to slack off. So much about traveling with Daughter #2 is routine by now, that we're on auto-pilot to some extent. The day will no doubt come when this will blow up on us, as the concert did last night.

We're flying west in a few weeks. Can't wait to check the tickets to see if we're on United. Here's hoping for a major financial windfall that might make it no longer the case that our 13 year-old car is 'the new one.' Or at least I may enjoy a free steak-and-lobster dinner when they are informed of my daughter's diagnostic status. Would it be pushing it to ask for a nice wine course, even though she's not of drinking age?
Last edited by DC47 on Tue May 12, 2015 6:16 pm, edited 1 time in total.
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Re: The Autism Thread

Post by howard »

sancarlos wrote:Question - is there any consensus of medical opinion on the most likely reason that the frequency of autism is increasing? If not consensus, are there any commonly held thoughts on why?
It is very difficult to say, because the inclusion criteria has drastically enlarged.

Layered over that fact, awareness and affirmative efforts at diagnosis have increased. One of the forces behind both broadened criteria and increasing awareness is some people and some organizations make significant money with each new diagnosis, regardless of where on the spectrum.

I've seen a little bit of data attempting to use old criteria to determine if there has been a change in incidence, and what I have seen is not conclusive.

A lot of smart people thing something in the environment (food, air or water pollution, medications, maybe even vaccines, which is not as open and shut as either side would lead). Like mercury in tuna fish. But nothing remotely approaching proof.

I am nothing like an expert, I've just done a little bit of reading. I'll step aside for the real experts to educate me/us.
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Re: The Autism Thread

Post by DC47 »

I'm curious too. Though less than some may think. I don't even care too much how they label my daughter, unless it leads to some kind of improved therapy. And no diagnostic label ever has.

Clearly, one part of the autism boom is diagnostic. It's obviously like this with many disorders (e.g., ADD), making the tracking of incidence rates over time essentially impossible.

One year our daughter was one cluster of labels, the next year she was autistic. We were told this had to to with 'changing diagnoses of female autism.' Two different diagnosticians (using different tools) differed (yes, shocking). I debated this matter at some length, as she her behavior patterns didn't fit what I had thought of as classic autism (e.g., she fearlessly seeks out social interaction, though lacks social skills). But eventually I just accepted the notion that autism was now a far broader 'spectrum' than I had previously understood.

I actually don't care that much. I just want to figure out how to meet my daughter's needs. We know her so well; diagnostic protocols don't really add value with this.

Edit: I guess there is one thing I care about in terms of causes of autism. But that I would love to forget. Research indicates a possible link to older fathers.
Last edited by DC47 on Tue May 12, 2015 6:31 pm, edited 3 times in total.
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