TH and I were walking today. We walk together a lot, and by "together," I mean that he is linked to me like my barnacle, hooked to my arm with his arm, adding about 30 extra pounds of downward pull to whichever of my sides he's on. In fact, I have him switch sides so that I don't end up listing permanently, like the Leaning Tower of Pisa, from all the weight.
Today, we were on just such a walk when somehow--gee, can't imagine how--we got on the subject of autism. The context was the difference in ability to use speech among autistic people. TH is aware that he is unlike some other autistic people in that he can talk. A lot. Sometimes with much sense and sudden insight, and other times with what seems like very little of either. He's also aware that he flaps and makes a lot of nonsense noise and grimaces, and we were talking about how everyone with autism can seem so different even if they share little bits and pieces of some of these things, and that's when he said it.
"I think that people who can talk really well and don't flap and don't have a lot of things like that but still have autism are being very 'low autism.'"
"'Low autism?'" I echoed (the irony). "What do you mean by that?"
He explained that he meant just what he said, that they are showing a low level of autism. Continuing, he elaborated his own linear version of the spectrum, in which there is a medium autism and a high autism, and the features of each. High, to him, meant difficulty with talking and a lot of flapping and grimacing and noises. These are his terms, by the way, not mine.
I was struck at the way he didn't place autism in the context of "typical" function. He wasn't talking about "high-functioning autism" and "low-functioning autism." He was talking about how much autism was there, front and center, present and accounted for, disregarding function completely. And then he surprised me even more.
"And you can be in different places on that scale," he said. "When I'm really calm and can talk, I'm on the low-autism end. But when I'm really excited and need to flap and make my noises and faces, I'm more at the medium-autism part." In other words, some days are more autism-y than others. Not less function or more function, just more or less autism.
Furthermore, his scale has no "zero." I know this because he drew it for me when we got home (see image). Its lowest setting is "super low autism." The highest appears to be "out of control with" and lacks increments entirely, a reflection, I think, of how he feels at times like that.
I'd say that this day, given that he was able to articulate all of this, was a low-autism day for him. Although when I suggested that I film him while he explained his idea, it kind of turned into more of a medium-autism day. Autism can be that way, you know?
Thus, my nine-year-old autistic son helped me today, solving a mystery I've puzzled over about why on some occasions, I can say, "Are you ready to do math?" and he'll sit right down and do 10 problems, while other times, he'll only respond, "Eeeeeeeeeeeee!" Now, I've got a lexicon to turn to--and possibly turn on him--when we're having one of those "Eeeeeeeee!" sorts of days.
Autism operates on a sliding scale, according to my autistic son, and not as a measure of function--because you know what? To TH, the function is always there. It's just that sometimes, intense emotions, intensely felt, like excitement or that ever-present anxiety can scale up the autism even to "out of control with." What matters to him is the autism scale, not the function scale, and I found his perspective unique--just like his autism.
32 comments:
I am kind of new and have a new diagnosis for my 19-month-old. We're at a very different place, obviously, and we have no idea how his autism is going to exert itself in the long run. But I thought this was a beautiful post. Thanks to TH for articulating it and to you for posting it.
thankyou that was great my daughter is in the mid-low range but sometimes has great moments. She can talk but we have to drag it out of her. I got a lot of positive info out of this story.
Thank your son for sharing his insight . I am what the professionals would call "high functioning" because I can work a job and only need "some assistance" , but he is so right on that some days my autism is high and words and tasks feel like swimming through sand . I wish that the experts who would like for us to fit in such clean categories could understand that where ever they try and tack us down on their spectrum, we will slither up and down, none the less .
Wow. This is beautiful. TH is one smart boy.
Interesting how sometimes kids can explain these things so much more clearly than the experts. Like when my niece (she was 4 at the time) said, "I know that GL's problem is. His 'calm down' button is broken."
Brilliant!
Great post; wonderful to see it from TH's perspective.
Um, wow. I had more or less thought of my own that way, but not realized it explicitly.
"He explained that he meant just what he said..."
I have this moment all the time. I'll say something, somebody will ask what I meant, and I'll think "I meant THAT; that's why I said it exactly as I did."
Smart kid you've got there. But you know that.
Delighted to read this post, thank you. It is excellent that TH has verbalised and graphically drawn this so well. Thanks for sharing.
The autistic member of our family also has times when they are more autistic than others. We showed a graph over three years to the psychologist that revealed the changes are seasonal - particularly spring and autumn.
I can also personally relate to TH's description of autism as a measurable thing that gets in the way of functioning. I have a long term illness that includes times of cognitive dysfunction or brainfog. It is incredibly frustrating to be blocked in my ability to work and write when it turns up unexpectedly.
What a brilliant way to describe it - I've never really thought of it that way, but I see daily evidence between my boys. Some days are higher and and some lower. How terrific that TH is able to verbalize how he experiences both.
I appreciate his perspective. And yours.
And I learn every time I read here.
If you don't think it's weird, thank TH for me. He, and others like him... with moms like you, have contributed a huge amount to my understanding.
And to the way I handle the children I work with.
The newest guy in my program is autistic. I had to (verbally) sign a paper that basically said, "I am not afraid to have this kid in my program and confident that I can handle his issues."
I don't know if I will ever be completely confident, but I do feel more COMPETENT because of the things you write here.
(of course you're not the only one... but yeah.)
Wondering if TH associates his "high autism" days with any positive characteristics. He must surely be making connections between his extraordinary abilities and his extraordinary differences?
Morgan
This is great, Smart boy you have.
TH: "Autism operates on a sliding scale, according to my autistic son, and not as a measure of function--because you know what? To TH, the function is always there. It's just that sometimes, intense emotions, intensely felt, like excitement or that ever-present anxiety can scale up the autism even to 'out of control with'. What matters to him is the autism scale, not the function scale, and I found his perspective unique--just like his autism."
About the italicised bit:
Can anybody here spell 'natural psychology genius'? Because that's what the lad is. I could not have put that sentiment better myself.
I think he's got a better handle on who he is than most psychologists/psychiatrists could ever get. Well done him, and well done you... I can only hope that my ex-wife and I are doing as good a job with our autistic child.
Wow! TH said better than any of us can. It makes total sense to me. My son has Asperger's - so said to be high-functioning -- which he usually is. But, when the uncontrolled emotions are there, all function seems to be null and void. Thanks for sharing.
Agreeing with everyone but my expression is the same as Arby's:
Brilliant!
What a switch in perspective for this 'functional-minded' therapist!
Barbara
I could not agree more.When I read your post, my reaction was "but of course that is exactly the way it is. And it can vary depending on where you are on your cycle.PMSing days are always very high autism days.Hope not that's not too much information.
Thank you, your writing has helped me a great deal.
I absolutely love this and can't wait to share it with my own son. He has been feeling like he only got the "bad parts" of autism and I think it is a reflection of how hyper-focused everyone around him is on any little behavior or verbalization of anything other than what TH would call "low autism."
This is part of what I have been trying to help him grasp, but has been so difficult for me to translate into kid-friendly language. Thank you for posting this!
I'm going to share this with my oldest son, who is 14. Your son did a great job explaining this. Tell him that it's going to help others.
Kindest regards from Sam's Mom
As one of the commentators said "a smart boy". That he understands the concepts he is using distinguishes his experience from many low functioning, intellectually disabled autistic persons.
Whey do some persons with high functioning autism/aspergers feel the need to obscure the realities of those with much lower functioning autistic disorder?
My son is 15 and very low functioning. He can not participate in this discussion. I am proud of him as he is, he brings me joy each day, but he is low functioning.
Stop trying to suppress the realities faced by children like my son.
I find your accusation odd. You obviously have your perspective, but I can't see how that translates into my "suppressing" anything or trying to. No, my son is not intellectually disabled. Yes, he has autism. I guess I could turn this around and ask why you want to suppress his right to express what he knows about it...or mine to convey it.
Also, I can assure you that my 9yo son does not "feel the need" to obscure the realities of those who are, to use his scale, more "high autism." Indeed, we were talking about that when he started describing his viewpoint to me and discussing those realities very seriously.
I find the comment by Autism Reality NB somewhat perplexing. I suppose there would be those who would call my own son "very low functioning" or, in TH's words, "high autism," too. As such, he is wholly incapable of carrying on such a conversation as this or any other. But, I don't think emily's sharing of her son's unique and fascinating perspective is suppressing any realities faced by any other person. To make such a claim is as silly as saying that parents of girls are trying to suppress the realities faced by boys. No, they simply have a different reality.
I get so tired of the pot-stirring mentality which demands that those who are different from one another must, therefore, be any more or less valuable or have opinions which are more or less valid than any one else's simply because they are different.
Last time I checked, humanity and differences were not mutually exclusive. I find TH's musings fascinating. They may or may not be representative of my son's thoughts; I may never know. But they are fascinating and they are his. I am grateful to you, Emily for sharing them with us.
What an insight! Thank you so much for sharing. I to have a son with Autism. He is 5. Our blog for my son is: http://lionstigersandautism.blogspot.com
I look forward to following your posts! =)
"I find the comment by Autism Reality NB somewhat perplexing"
I don't.
I find it to be the same low-quality drivel that he micturates all over the blogs of people whose opinions he doesn't like.
Don't sweat it. It's just a drive-by have-a-go-at-someone thing.
My son is five and although he can read and say some words, he can't talk in sentences, does not know how to explain himself, and can't grab the concept of social interaction. Yet. =) But, instead of giving me the feelings as NB did, I found it insightful. Even more, I thought that how proud you must be of your son. I am so proud of mine! You give me hope that someday he will let me in on his little secrets. =)
@David N. Andrews...as someone who did a postdoc in urology, can I just say how pleased I am that you used the word "micturate" in your comment? Woohoo!
@Amy...TH was like that at 5. He just couldn't read at all right up until the middle of second grade...age 7...after 2.5 years of efforts...and then one day, he could just read. No two autistic kids will be the same, but that's what happened with him. And he's gotten progressively better about articulating things to us. I have to add the caveat that whenever I write a conversation, etc., here that involves him, there's often much that is left out--interjections, repetitions, echolalia, etc.--for the sake of clarity. He's a good boy, and we love him so.
TH makes total sense to me, as usual. I've tried to explain this concept before, but never have managed to do so succinctly and clearly like TH has here. I run on the low autism end of the scale, and sometimes in the mid, and occasionally all the way up to out of control with (the not having incriments there is spot on, TH!). By the by, Emily, my diagnosis is official now!
So, I mostly just want to know where I can ask you a question or series of questions (an email address or something similar). But while I'm here, I should probably add that I loved that post.
I do beleive firmly that although autism is a "spectrum" or a sliding scale ;), that we can LEARN from each other, regardless of the degree of disability. The autism puzzle isn't the person, but why we know so little of it's etiology,medical needs of autisitic people,personal and psychological needs, and how to teach to reach the child with autism.
I read this a while back and got interrupted before I could comment. I love TH's take on things and am glad you've shared it here. My guy used to use an "eeeee!" sound when he was younger and didn't have the words to tell me what was on his mind. Even now he definitely operates on a sliding scale. He's just waking up, and I'm wondering what kind of day we'll be having today. :)
I think that 'sliding scale' can apply to outside the spectrum as well. We all have days when our personal challenges manifest them selves more or less. I was operating on a very low frustration level yesterday, but by Thursday afternoon, I'll likely be sliding up my personal scale of tolerance and have very high frustration.
Don't dare surpress your realities TH. No realities should be surpressed...
I was going to say something similar. Your son definitely displayed uncommon perception and articulation - and I think most of us can agree that even 'neurotypical' people can have an autism-y day. Everything's a matter of degree.
Post a Comment