There's a saying: If you've met at least one person with Autism, then you've met at least one person with Autism.
I fear this might have already become a cliché. What this saying means is, if you met someone with Autism, so what. They're all unique. Don't presume you've got them figured out.
It's an easy thing to do. It's understandable to make assumptions. Humans like to simplify things. But it's always counterproductive.
So, what I'm saying is, reading this article might be a complete waste of time, for your particular situation. I don't presume to know your kid.
The Team
Ben is 14. TJ is 8. They both have autism. Their sister is 11, and she is neurotypical (no autism). My wife and I have been married for 17 years. I have a background in information technology and I work from home. My wife was an RN until Ben was born and then she quit, is now home-schooling the two youngest.
Ben goes to High School. He has severe autism, so he is in a special class of peers with varying levels of special needs.
TJ is being homeschooled, but also gets behavior services. His autism is a little less severe, but his behaviors are more destructive.
Ben and TJ cannot converse. But they do have vocabulary. Ben has at least 10,000 words. TJ is probably closer to 3,000.
They can both say full sentences if prompted, but my theory is that these are mostly single long words to them.
The longest sentence TJ can say is, "I can't wait to eat my food." But it often comes out more like, "I ca WAIT food." There's a story about this phrase, see Narration below.
They both have problems waiting when mommy is preparing meals. A lot of behavioral issues come to the surface during this time. So I talk to them and try to help them express their frustration.
Starbucks Cards
We carry a few $5 Starbucks Cards. Our kiddos love to grab people's drinks and chug away. While we certainly don't encourage this, sometimes there just too fast for us. We've gotten into the habit of scoping out a room to see if there are any potential drink targets. We try to see the room the way our kiddos do. But we can't always anticipate the situation.
In fact, our youngest decided to take it up a notch. He concluded a long time ago that there was no chance he'd be able to actually enjoy someone else's drink, so his only goal now is to knock it out of their hands and laugh.
So that's where the Starbucks Cards come in. Believe me, almost nobody will accept the card. You're just showing that you're prepared.
Plastic Plates
We carry plastic plates to restaurants. Although, we don't go to restaurants very often, when we do, these come in handy. Often, the restaurants provide either weird baskets and paper to put their food on or breakable plates. Neither of these are very compatible.
I have a theory. The setting is unfamiliar, but these plates are. These plates reinforce the antecedent of "it's time to eat."
Narration
I believe both my boys benefit a lot from continuous narration of what's happening. It helps them because they don't ever ask what's going on, but I'm sure they want to know. Giving them a "heads-up" without requiring a prompt needs to be balanced with the notion that sooner or later, they'll pick up the vocabulary. So along with narrating, we also listen out for their interpretation of the vocabulary they're picking up.
TJ especially picks up on the phrases in context. When I'm going to close the door to a room, he'll often want to take over and tell me "close the door." He's not telling me to close the door. He's telling me that he's closing the door (whether I like it or not). When I repeat it, he closes the door and says, "thank you." I have to say "thank you" or else he'll just keep saying it until I do.
This tendency for TJ to mimic narration and require my verbalization in a certain order might be classified as a form of reverse echolalia.
Echolalia is when someone repeats what you say without understanding. Reverse echolalia is when someone says something meaningless and requires you to repeat. The difference is that TJ has context for the correct phrase, but not command of the words. He hasn't yet seemed to realize that "close the door" is a phrase that can be broken into parts. "Close the door" is a long word. The individual words aren't meaningful on their own.
The narration is a stepping stone to speech. In very young children, it's just cute babbling. As our kids got older, it seemed a little less cute and more OCD. But really, they're just doing what we do, as they see it. We expect them to repeat phrases they don't quite understand, so they have us do the same.
Theory
These are just a few ideas. Again, everybody's different. Most of the time, people hear "autism" and think "what sets them off?" In our case, our boys are usually pretty chill. For TJ, if he's expecting a snack and he doesn't get one, that'll set him off. About the only thing that sets off Ben is sudden noise. Even then, most of the time he's chill about it unless that sudden noise came from TJ, then Ben thinks he has to do something about it to shut him up.
It's always a matter of finding the antecedent to the behavior. The antecedent is a fancy word for "thing or event that existed before." We say antecedent instead of cause because the behavior's cause is muddled between the trigger and the person responding to it. So just to be clear, we're talking about the environmental cause, which we refer to as the antecedent.
Finding and controlling the antecedent isn't always possible, so we balance that with a compensating control (like the starbucks cards) until we can find the antecedent for the particular behavior.
Join me on: /f/autism
Brains are interesting things.
I think my brother could benefit from talking to you. He volunteers as a "mentor," for some late teens autistic kids. He's always "trying to figure it out," and I can't blame him. I would be too.
Thanks for giving us a glimpse into your life! If you ever have any $5 Starbucks cards dangling around collecting dust, I'll put them to use for ya.
Yep, figuring them out is always on our mind. Every new behavior, good or bad, seems to indicate some part of the puzzle. Like, just yesterday, Ben started saying, "Speed. I am speed."
This is new behavior, in a general sense. He never quotes movies. But he absolutely adores Lightning McQueen. He's always holding his matchbox mcqueen car.
I'm excited to see this subject being addressed through a specific forum functionality on ChainBB. It makes it so much easier to keep track of active discussions. I wish you every success @inertia.
I have 3 children. I have a 19 year old son, 14 year old daughter and a 8 year old son. My youngest has Aspergers' Syndrome and we started noticing it when he was about 3 years old tho it took a lot longer to get a proper diagnosis. My daughter likes to instigate and causes my youngest to become upset because she finds it funny but reality she's only causing me problems because I am ultimately who had to deal with my youngest meltdowns and fits of rage. My youngest was very slow/late to try and talk and form sentences and that was justified as normal for a child that's high spectrum Aspergers. He actually could say larger words would leave out the smaller words like a sentence "I would like to go outside" turned into either "outside" or to "go outside!!" but in a stressed manor because at first we wasn't totally understanding him until we figured out his way of speech. As my youngest has gotten older he's gotten better at trying to talk and hold conversation but it always doesn't come out right the things he's trying to say and because of that he gets upset and shows fits of anger because he thinks he's being made fun of because of stuff my daughter does when she is instigating him. Also my son has a fascination with numbers and appears to do better with them than actual letters/words. He can memorize numbers to the point of you have to make sure he hasn't seen your debit/credit cards because he remembers the numbers and can use them at will also passwords hes good at those too. Then there is video games and he is actually trying to script/program things in Minecraft and he found this on his own. Oh yeah I also come from a information systems background.
I feel like I have things pretty under control for my youngest except when my daughter wants to start with him and then when I really get upset she gets mad at me and tells me to beat his butt that would cure/fix him and I do try and explain to her that will not help. That it will make the problem worse because he isn't being bad just to be bad. I am not sure if she does this to get attention or if she is truly that bored she had to interact in such ways.
Thanks for sharing this post and I'll certainly check out chainbb.com finding other people who deal with the same things as I do is really helpful as I've found most doesn't understand what the issue is... or if someone has had prior experience with a similar situation will come on too strong or that they know more than I do about my kid. It also makes for awkwardness when around people who think they know everything about autism. Again thanks for this post and sorry I got a bit long winded here...
This is one of the more difficult things to deal with. People get frustrated with our kids because of their inability to conform to what is socially acceptable, then blame us for not dealing with it properly.
It's especially hard when it's family telling us we're doing things wrong. You would think they'd know better since they're aware of more history than strangers.
We should try to remember that they're frustrated. They're trying to solve the problem. In many situations, they're even trying to be helpful. They think we just need to approach the situation better. I don't blame them for being frustrated.
It can also boil down to immaturity on their part. It's all part of the package.
On some level, our frustrated family members do understand that there's no way to discipline away autism. I think it's a good to reassure them that we are frustrated too. We're all in the same boat.
My kids are neurotypical, however they will do the same thing. One time my wife left her starbux double shot on the kitchen counter for just a second, and my 3yo grabbed it and casually started drinking. He drank about half of it. Needless to say, he was up all night bouncing off the walls.
Really interesting post mate. Very personal.
You said that Ben goes to high-school, yet he's only 14. Is it normal for kids to be in high-school when they're 14 years old?
I'm used to high-school being for 15/16 years old kids.
Regarding the "knocking out coffees", why do you allow that? Sorry, I know close to nothing about autistm so please don't take this the wrong way but, couldn't you just say "No, don't do that ever again"?
Yeah, 14 is pretty common for freshmen in the US.
This is a very good question. For children with autism, verbal queues may not be internalized. Communication paths are just different. If I tell TJ that I do not like certain behavior, sometimes he realizes I'm unhappy. But the next time the situation arrives, he just can't help himself. There's a disconnect between what we find socially acceptable and what he wants to do and no amount of escalation will address the issue.
Instead, we have to find a different strategy. We do not want TJ to knock people's coffee cups, so while we look for alternatives, we have the starbucks cards.
One strategy to deal with it is to see the cups when TJ does and try to get him to verbalize instead of acting out. The goal is to try to replace the action with words, eventually.
Thank you for answering!
YOU look like great parents to your children. They're really lucky to have you! I hope that in the United States the management of autism and better than in France because in France it is really bad... My nephew is in the process of diagnosing autism asperger, I don't know if you know?
I hope it goes with my English because I'm French. :-)
I really admire your patience and the love you have for your family.
My youngest nephew is HF. Loud noises, certain feels, and shirt tags are his thing. Have several friends with varying degrees of autistic kids - like you said, you meet one kid with autism, you've met one kid with autism. My friend's daughter loves to paint. One time we went to JoAnn Fabrics to get some stuff to gussie up a lamp, and Kaylianne vanished in the 2 seconds that Becky was looking at stuff and I was off in another aisle. She found her covered head to toe in the paint aisle. Thankfully, K didn't wander outside. This event led me to start a non-profit that sent free art supplies to families with kids on the spectrum. Didn't work out due to lack of support and participation. :( I was able to help a handful of families though, and that makes it worth it to me.
Thanks for sharing your experiences with us, @inertia ;)
Mo
Thank you for sharing this, cuz. I admire you and Karen SO much. We love you.
God Bless you for your amazing love and patience. It sound like ground hog day every day. I know many autistic children are extremely intelligent. My favorite autistic adult that is now a professor her name is Temple Grandin. She has a good story about how her Mother helped her to live with her autism. Best to you all! 🐓🐓
interesting things
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Nice article.
Thank you, sir. You will find many nice articles on: https://chainbb.com
Autism teaches parents patience and selfless love. It is as though God has given them this gift to grow as a person and spiritually with Him through the autism of their child. Some folks also believe there is link between autism and vaccines. Not all children react well to mass produced medications and vaccines. @canadian-coconut has addressed this issue much on steemi and it is worth reading her posts. Thanks for sharing your tips to others and trials you overcome on a daily basis. others of us out here can learn and grow from them. A wonderful post my friend.
OMG! this article is on point. My son is on the spectrum. People compare him all the time is annoying! thank you for sharing! sending you love & light!