You know you live with Autism when...(in honor of World Autism Day)

[buddy]

I've been reading tons of posts online about people's personal stories with Autism. One board has people list things that were very indicative of living with autism or living with a child with autism.

It has my mind thinking of so many things things that are funny, things that are mandatory, and I just do automatically......

* if there is a choice? Always go with the green.
* buy only athletic pants, no jeans
*never let on that there might be some fun thing happening in the future, just in case it doesn't pan out
* Always have snacks and ear plugs in my purse
* never plan an activity during a big NASCAR race
* never assume a fun option will be preferred to the routine!
(I think I've shared an example before, I offered to take Q to the Mall amusement park and have a day off school for fun....it was a free day because they film for commercials. He just calmly said, that is a HARD decision. He really did not want to miss his bus)
* so many times I forget how literal he is an how much he misses of the big picture. He only just realized after all these years that SpongeBob lived underwater.


I'm sure many of these things go on for non spectrum folks, but it just happens to be world Autism awareness day so it was on my mind...but happy to hear from anyone.......

So how do you fill this in????

You know you live with Autism Spectrum Disorders (ASD) when........

 

[BusynMember]

When you say, "Come on. We'll be late. We have to leave by 9" and you hear "So? It's only 8:59."

 

[nerfherder]

Hee hee hee.

My t-shirt idea: "Why yes, I'm autistic, but right now I'm flapping 'cause you f*rted."

You know you live with autism when you have to lock up EVERYTHING at night.

...when you have to hide the space heaters in the summertime. And the winter coats.
...when you learn to help your teen with her sanitary pads in a public restroom.
...when you have to explain to an otherwise educated person "No, graham flour is not some special magical wheat free healthy snack safe for kids who are girlfriend." (This really happened.)
...when you have to explain to a family friend "No, she can't have 'just a little piece of matzah' at the Seder because God wants it that way." (Actually if there's a medical need, medical needs trump *all* traditions and laws of Judaism. Maimonides wrote extensively on this hundreds of years ago.)
..."If you give a mouse a cookie it will stay up all night stimming, grunting and reciting the script of every movie and cartoon it has watched since it reached the age of TV awareness."

(Incidentally, Kiddo didn't start the stereotypical flappy-stimmy hand behaviors until she was put in a ESY class that was primarily low functioning spectrum kids. She was the highest functioning in the class, and I said NO to ESY the next year unless they could come up with a better plan for the autistic kids who were all mimics/echolalic to some extent.)

(And they did! A private summer camp run by one of the local RC churches thought it was a GREAT idea, the school paid as it was cheaper to provide an aide and pay the camp costs than open a whole new class. It was a ROUSING success. Then the County Mental Health/Magellan Mental Health refused to chip in for aides because they felt keeping kids from drowning during the swim portion of the classes wasn't "medically necessary," and while reviewing their records on Kiddo for the mediation hearing I found errors that were pretty hilariously shocking. Especially in the diagnosis codes. But that's another story. As is the one where the U.U. camp kids went on strike until the staffers found snacks that were safe/fun for Kiddo AND everyone else so she wouldn't feel left out.)

 

[buddy]

(Incidentally, Kiddo didn't start the stereotypical flappy-stimmy hand behaviors until she was put in a ESY class that was primarily low functioning spectrum kids

That happened to Q too. He imitates behaviors of others often....especially the repetitive ones. I love the tshirt idea.

 

[InsaneCdn]

You know you live with Autism Spectrum Disorders (ASD) when........


... putting the blankets on the bed in the wrong order results in a melt-down.
... each food on the plate must stay distinct from any other food on the plate - and eaten "in order".
... the routine you really want to create never seems to happen, but... add something to the routine as a treat, that difficult child really likes, and ... it's ROUTINE, don't ya know? We "always" do XXX...

 

[AnnieO]

...There are things lined up all over the place and if they get out of order/line all hell breaks loose...

 

[HaoZi]

"Why do I need a shower? I can't smell me."

"If I was supposed to eat vegetables I wouldn't have canine teeth. Meow."

 

[BusynMember]

I forgot the best one. It happened when my son was nine.


One day with the psychiatrist:
Psychiatrist: You can't take him off his medications. He is hallucinating. He is hearing voices. Loud ones. Sometimes they boss him around.

Me: Um...yes, that's true, but I'm doing it anyway.

A year later at home with Sonic:
Me: Sonic, you obviously don't have bipolar and don't hallucinate. Why did you tell the psychiatrist that you hear voices?
Sonic: I do.
Me: No, you don't. There are no voices in your head.
Sonic: Yes there ARE! You just talked to me and I heard your voice!

 

[HaoZi]

I forgot the best one. It happened when my son was nine.


One day with the psychiatrist:
Psychiatrist: You can't take him off his medications. He is hallucinating. He is hearing voices. Loud ones. Sometimes they boss him around.

Me: Um...yes, that's true, but I'm doing it anyway.

And does it tell you anything... that the first three times I read this I took it to mean that the loud bossy voice was you telling him what to do?

 

[buddy]

I forgot the best one. It happened when my son was nine.


One day with the psychiatrist:
Psychiatrist: You can't take him off his medications. He is hallucinating. He is hearing voices. Loud ones. Sometimes they boss him around.

Me: Um...yes, that's true, but I'm doing it anyway.

A year later at home with Sonic:
Me: Sonic, you obviously don't have bipolar and don't hallucinate. Why did you tell the psychiatrist that you hear voices?
Sonic: I do.
Me: No, you don't. There are no voices in your head.
Sonic: Yes there ARE! You just talked to me and I heard your voice!

Should be in a text book....really!

 

[trinityroyal]

You know you live with Autism when:

1) The blue t-shirt you wear to acknowledge World Autism Day has Rock-Paper-Scissors-Lizard-Spock on it, one of 3 Rock-Paper-Scissors-Lizard-Spock shirt in the household. http://en.wikipedia.org/wiki/Rock-paper-scissors-lizard-spock
2) All socks MUST be seamless, or at least turned inside out so they don't "bizz my toes".
3) You're answering this question in the form of a numbered list.
4) You have no dish cloths available for dishes because the ones not currently in the laundry are all in use as chew-toys by various children.
5) If they didn't have the dish cloths, they would be chewing massive holes in their clothes.
6) Your 3-yr-old calmly tells you, "That's nonsense. A tank engine does NOT have a tender." And he's right. Sigh...

I could go on, but my socks are bizzing my toes and I need to find a seamless pair.

 

[BusynMember]

He was on antipsychotics for three years because he answered that, yes, he hears voices in his head.

 

[HaoZi]

Oh I got that, sorta, because I vaguely recall you mentioning it before. But there was this sidelining thought that yes, the loud bossy voice (yours) would continue telling him what to do. That's what I read it as.

 

[Wiped Out]

These are very interesting to read because even though my difficult child doesn't have autism some of these characteristics are very much like him.

 

[Hound dog]

I'm going to have to only pick some of the highlights.

When your son can quote the script of every Star Trek episode from the original, New Generation, Deep Space Nine ect.

When you go shopping with your son and the young cashier (who knows him) is flirting blatantly and he thinks she is just being "polite". Poor girl still does this and it's sad to see her frustration when it never clicks.

When you have to threaten that your son is not allowed to eat until he attends to personal hygiene.........and then you have to smell to make certain he used soap ect. (those teen years were horrible)

When your son has worn the same outfit for so long they could likely walk across the room by themselves. (just discussed the jeans he's been wearing for lord knows how long have go to go!)

When you have to drag your son shopping with you so that he has some type of real life social interaction other than with just you or family.

When your son is 26 and you still can't get him to talk on the phone except to order pizza.......um, wait.......he now orders it online. omg lol

There is so much more but that is enough to get the idea.

 

[HMBgal]

These are very interesting to read because even though my difficult child doesn't have autism some of these characteristics are very much like him.

I honored today by teaching five adapted PE classes back to back, with 10 kids with autism in each, all moderate/severe classrooms. That's lots of kids by noon! Anyway, someone once said to me that we are all autistic to a degree, but some of us are really good at it.

 

[BusynMember]

The loud voice is still in his head...lol. Yes, it is me. Although, really, it's not that loud. He just thinks everything is loud...lol.

He is much less literal and anal now that he is nineteen, but he really likes to have order in his room. His room is the cleanest in the house. Nothing is EVER moved even an inch. But basically he has outgrown a lot of his autism-isms, but he can still recite an episode from his favorite shows verbatim. And he likes to watch them over and over again.

Anyone notice, though, that their own high functioning autistics are far more "normal" than they used to be? My son can transition, has a great sense of humor, especially with word play, and went from a nervous, raging toddler to an easygoing, cheerful young man. A lot of his old behaviors, like meltdowns or sucking his shirt until it was wet from neck to halfway down no longer exist and he is mindful of how he behaves in public.

I was told that autism, being a developmental disability, does get better and that the autistics tend to "grow up" completely (whatever complete for them IS) around 30 rather than 18. I see lots of growth. Sonic really wants his own apartment. Of course, he will be in a Section 8 house that has an overseer, but he will still be mostly on his own there and I know he can do it. We didn't feel this would ever be possible, looking at his early years and how delayed he was. He will also be able to work in the community, although not at a job where he has to multi-task. It's far more than we expected. He reached about a sixth grade level academically and is very good at repetitive jobs and manual labor jobs. He can also do a cash register really well.

He was never considered an Aspie, yet he has done better than most Aspies I know. He is my hero. I'm very proud of him. THat's my tribute to him on Autism Day

 

[AnnieO]

MWM - see, that story right there gives a lot of us hope for our developmentally delayed kids!

What you said about reciting episodes verbatim and watching them over and over again... That's me. I do the same thing with books. When the Twilight series was really popular, I actually re-read them all - 15 times - in about a year. Whenever my favorite author, Diana Gabaldon, comes out with a new TOME in the Outlander Series, I will re-read the entire series right before, just so I am up to speed. (There are like 9 books, and when I say TOME I am so not kidding. I've been known to pick books by their size. But I digress.)

What was that about all of us having some form of autism, it's just that some are really good at it...?

 

[BusynMember]

Naw...just that all of us are eccentric in some ways I like to read and re-read books too. One thing though: I can not recite them verbatim. Sonic can do that with a television show or even a movie. Don't know where the scary good rote memory comes from.

 

[buddy]

I used to have a student who could sing all the words to Disney movies but she was essentially non verbal. We used pecs with her, she was able to request after six months and did eventually use some verbal skills but she didn't miss a syllable in those songs.....