Help me understand autism
October 14, 2016 2:01 PM Subscribe
At the school I work at (in a mostly non-educational role) there are several children with severe autism (or what I would consider severe, but maybe not). They have their own aides, do modified programs, etc. I've never really worked with or been around children with autism before and because I don't come from an educational background, I am really struggling with understanding what autism *is* exactly and understanding what reasonable behavior/educational expectations look like. Are there any resources I should be looking at to get a better idea of what autism is and how to best interact with the children at the school who have it?
I understand that it's a spectrum, but from my (probably very poor research skills) it kind of sounds like it's everything and nothing. It can go from very high functioning to very low functioning and I just struggle with understanding the spectrum itself.
This is terrible, but I find myself just getting annoyed with their behaviors I don't understand. I don't understand how autism affects their senses and how a sensory overload can lead to what appears to be a temper tantrum (but is actually not a temper tantrum in the way an average 5 year old would have a temper tantrum). There are some professional development opportunities I'm pursuing at work in the future to get a better understanding of autism, but until then what should I be reading or watching?
I understand that it's a spectrum, but from my (probably very poor research skills) it kind of sounds like it's everything and nothing. It can go from very high functioning to very low functioning and I just struggle with understanding the spectrum itself.
This is terrible, but I find myself just getting annoyed with their behaviors I don't understand. I don't understand how autism affects their senses and how a sensory overload can lead to what appears to be a temper tantrum (but is actually not a temper tantrum in the way an average 5 year old would have a temper tantrum). There are some professional development opportunities I'm pursuing at work in the future to get a better understanding of autism, but until then what should I be reading or watching?
Track down the school's BCBA and ask them these questions. That person is in the best position at that school to help you with the kids at that school.
posted by zizzle at 2:44 PM on October 14, 2016 [2 favorites]
posted by zizzle at 2:44 PM on October 14, 2016 [2 favorites]
From my educational reading, it's not 'autism' you need to understand, rather it is the child with autism who exhibits behaviours that need understanding. In other words, and generalising, if you understand the stimulus for certain behaviours, then you can understand the child's otherwise inarticulate responses to the stimulus.
The approved form for gaining an understanding of unwanted (and wanted) behaviours in an educational setting is through Functional Behaviour Assessment (or Analysis). While you may not be able to conduct an assessment on your own, you can begin to observe some of the precursors to behaviour.
posted by Thella at 3:04 PM on October 14, 2016 [2 favorites]
The approved form for gaining an understanding of unwanted (and wanted) behaviours in an educational setting is through Functional Behaviour Assessment (or Analysis). While you may not be able to conduct an assessment on your own, you can begin to observe some of the precursors to behaviour.
posted by Thella at 3:04 PM on October 14, 2016 [2 favorites]
If you'd like to read another account of having autism and being non-verbal you can get your hands on a copy of The Reason I Jump by Naoki Higashida.
posted by eisforcool at 3:14 PM on October 14, 2016 [2 favorites]
posted by eisforcool at 3:14 PM on October 14, 2016 [2 favorites]
For an overview and orientation, read Neurotribes by Steve Silberman.
Then start reading things by autistic people. These are some of the blogs I like:
Autism Women's Network
Autistic Self Advocacy Network
Judy Endow
Neurowonderful
Never Less Than Everything
No Stereotypes Here
Ollibean
Squidalicious
The Bullshit Fairy
Thinking Person's Guide to Autism
Under Your Radar
Yes, That Too
Autistic Hoya
You might also read about the intense world theory.
Whatever you do, please do not listen to Autism Speaks, which is considered by many autistics to be a hate group.
posted by Lexica at 3:27 PM on October 14, 2016 [23 favorites]
Then start reading things by autistic people. These are some of the blogs I like:
Autism Women's Network
Autistic Self Advocacy Network
Judy Endow
Neurowonderful
Never Less Than Everything
No Stereotypes Here
Ollibean
Squidalicious
The Bullshit Fairy
Thinking Person's Guide to Autism
Under Your Radar
Yes, That Too
Autistic Hoya
You might also read about the intense world theory.
Whatever you do, please do not listen to Autism Speaks, which is considered by many autistics to be a hate group.
posted by Lexica at 3:27 PM on October 14, 2016 [23 favorites]
Lexica's advice is right on target.
There's an actual book of The Thinking Person's Guide to Autism and the Kindle version is cheap or even free if you have Kindle Unlimited.
posted by w0mbat at 3:40 PM on October 14, 2016 [1 favorite]
There's an actual book of The Thinking Person's Guide to Autism and the Kindle version is cheap or even free if you have Kindle Unlimited.
posted by w0mbat at 3:40 PM on October 14, 2016 [1 favorite]
If you're looking for some curated links that might help, a New Jersey library got a grant to put together a set of pages called Libraries and Autism We're Connected that can help libraries without a lot of money or time for better staff development on these topics to get better at helping patrons with autism. Specifically their Strategies that Work page is useful. I also agree to avoid Autism Speaks and Temple Grandin's book is highly accessible.
posted by jessamyn at 3:45 PM on October 14, 2016 [1 favorite]
posted by jessamyn at 3:45 PM on October 14, 2016 [1 favorite]
It's not 'autism' you need to understand, rather it is the child with autism who exhibits behaviours that need understanding.
^This, this, this. The best people I've seen work with children with autism are, by far, their devoted parents and caregivers. Why? Because you need to understand what motivates that child and, above, all, to have respect for them and their experience. These are things that parents and some caregivers just do naturally because they spend a ton of time with the child, but, more importantly - they care about the child's experience and go out of their way to understand them (not that you don't - I'm just making the point that parents and caregivers have the advantage of spending much time with them). If you get the chance, ask about the child's interests outside the home. What did they do, where did they go? What do they like to do? Do they have a character that they love or things that they like to collect? What fascinates them? This information goes a long way to building a relationship with them, which you need when behaviors escalate. That's how you get through.
Remember that, like any diagnosis, the word "autism" is a label meant to give the people discussing the concept a shared foundation of meaning. Beyond that, you are right when you say "it's everything and nothing" - that's because it's a different experience for different people. Just because it's everywhere in the media doesn't mean it is a straightforward diagnosis; it's extraordinarily complex, and takes time and effort to understand for that child. Give yourself a break and give yourself the space and the patience to try to understand each child you work with. Remember that no one has it figured out and you're doing the best you can. I learned that when I developed a curious "wondering" attitude instead of a "fix it" attitude, that went a long way. I used to get really frustrated with myself for not having the magic bullet to do X, but then I realized that no one else does either! The ones who worked with the children the best were the ones who were really curious and tried a TON of different things to engage them. I think a lot of times educational settings (not you personally, just the education system in general) tries to make kids conform in a certain way or "fix" them and these kids don't need fixing, they need support, which involves thinking outside the box and a little creativity. There is a difference between supporting and fixing. Fixing implies that there's something wrong, supporting implies that they have what's already there - you just need to bring it out more. The latter is much easier on both of you; the former is impossible.
For books, I'd recommend anything by Stanley Greenspan. I was trained in DIR/Floortime and ABA and his Floortime model is one which promotes respect and understanding. I love his theories and I'd recommend anything he writes. I'm hesitant to recommend his DIR/Floortime book because it's quite a long read and you may not be able to implement everything he advises, but perhaps this book (also by him) is a good place to start. It has clinical studies but includes perspectives from both the family and the clinician, which will help you understand different children's experiences. I have not read it, but if I were in your place I'd go to a local bookstore and thumb through a few of his books to see if they resonate.
Related to your question about the outbursts....I worked clinically with children with autism, most of whom were nonverbal, and every single one of them picked up on emotions and every. single. thing. that was happening in their environment. Many people thing that children with autism are not "there" or not present .... this is far from the truth. They can feel your frustration, and to some degree, are probably acting out from something that's going on in their environment that you can't perceive. We had one child who (and no one figured this out but his mother) would become extremely irate when she wore a certain shirt. No one knew it was the shirt, for weeks, until one day she wore it again and he pointed at it. Something upsetting happened weeks before and he attributed this negative event to the shirt that she wore. So... their behavior can come from anything... it's not necessarily something you have done wrong.
Sometimes it's something you don't even think about. One of my older clients just could not wipe the table (we were teaching functional living skills). So, we put stickers on the table. Turns out it was a visual-crossing-the-midline thing. Not an issue with motivation, as we all initially thought. So don't discount professionals like the OT, the art therapist, the PT, whoever that child is working with. They all have great insights. I was an art therapist/ home visitor and learned tons from the OTs that I worked with. It truly takes a village, and it's great to have support from other professionals.
I also worked with teens with autism, and one of the things that really surprised me was that, when they were left to talk about their interests, how able they were to converse without any guidance or prompting or any of the things that we "thought" they needed. It was just my observation, only handful of times, but it seemed that, in certain situations, it was US asking THEM to adapt a certain way to the environment, when it just wasn't who they were. Those observations were really humbling and it made me realize that what they need more than anything is acceptance.
And (not that you do this, but I have to say it) please, please, please don't talk about them in their presence, like they are not there. None of us like that, and neither do they.
posted by onecircleaday at 4:02 PM on October 14, 2016 [6 favorites]
^This, this, this. The best people I've seen work with children with autism are, by far, their devoted parents and caregivers. Why? Because you need to understand what motivates that child and, above, all, to have respect for them and their experience. These are things that parents and some caregivers just do naturally because they spend a ton of time with the child, but, more importantly - they care about the child's experience and go out of their way to understand them (not that you don't - I'm just making the point that parents and caregivers have the advantage of spending much time with them). If you get the chance, ask about the child's interests outside the home. What did they do, where did they go? What do they like to do? Do they have a character that they love or things that they like to collect? What fascinates them? This information goes a long way to building a relationship with them, which you need when behaviors escalate. That's how you get through.
Remember that, like any diagnosis, the word "autism" is a label meant to give the people discussing the concept a shared foundation of meaning. Beyond that, you are right when you say "it's everything and nothing" - that's because it's a different experience for different people. Just because it's everywhere in the media doesn't mean it is a straightforward diagnosis; it's extraordinarily complex, and takes time and effort to understand for that child. Give yourself a break and give yourself the space and the patience to try to understand each child you work with. Remember that no one has it figured out and you're doing the best you can. I learned that when I developed a curious "wondering" attitude instead of a "fix it" attitude, that went a long way. I used to get really frustrated with myself for not having the magic bullet to do X, but then I realized that no one else does either! The ones who worked with the children the best were the ones who were really curious and tried a TON of different things to engage them. I think a lot of times educational settings (not you personally, just the education system in general) tries to make kids conform in a certain way or "fix" them and these kids don't need fixing, they need support, which involves thinking outside the box and a little creativity. There is a difference between supporting and fixing. Fixing implies that there's something wrong, supporting implies that they have what's already there - you just need to bring it out more. The latter is much easier on both of you; the former is impossible.
For books, I'd recommend anything by Stanley Greenspan. I was trained in DIR/Floortime and ABA and his Floortime model is one which promotes respect and understanding. I love his theories and I'd recommend anything he writes. I'm hesitant to recommend his DIR/Floortime book because it's quite a long read and you may not be able to implement everything he advises, but perhaps this book (also by him) is a good place to start. It has clinical studies but includes perspectives from both the family and the clinician, which will help you understand different children's experiences. I have not read it, but if I were in your place I'd go to a local bookstore and thumb through a few of his books to see if they resonate.
Related to your question about the outbursts....I worked clinically with children with autism, most of whom were nonverbal, and every single one of them picked up on emotions and every. single. thing. that was happening in their environment. Many people thing that children with autism are not "there" or not present .... this is far from the truth. They can feel your frustration, and to some degree, are probably acting out from something that's going on in their environment that you can't perceive. We had one child who (and no one figured this out but his mother) would become extremely irate when she wore a certain shirt. No one knew it was the shirt, for weeks, until one day she wore it again and he pointed at it. Something upsetting happened weeks before and he attributed this negative event to the shirt that she wore. So... their behavior can come from anything... it's not necessarily something you have done wrong.
Sometimes it's something you don't even think about. One of my older clients just could not wipe the table (we were teaching functional living skills). So, we put stickers on the table. Turns out it was a visual-crossing-the-midline thing. Not an issue with motivation, as we all initially thought. So don't discount professionals like the OT, the art therapist, the PT, whoever that child is working with. They all have great insights. I was an art therapist/ home visitor and learned tons from the OTs that I worked with. It truly takes a village, and it's great to have support from other professionals.
I also worked with teens with autism, and one of the things that really surprised me was that, when they were left to talk about their interests, how able they were to converse without any guidance or prompting or any of the things that we "thought" they needed. It was just my observation, only handful of times, but it seemed that, in certain situations, it was US asking THEM to adapt a certain way to the environment, when it just wasn't who they were. Those observations were really humbling and it made me realize that what they need more than anything is acceptance.
And (not that you do this, but I have to say it) please, please, please don't talk about them in their presence, like they are not there. None of us like that, and neither do they.
posted by onecircleaday at 4:02 PM on October 14, 2016 [6 favorites]
The approved form for gaining an understanding of unwanted (and wanted) behaviours in an educational setting is through Functional Behaviour Assessment (or Analysis). While you may not be able to conduct an assessment on your own, you can begin to observe some of the precursors to behaviour.
This is pretty dangerous advice. Do NOT do this. FBAs are done by people with special education degrees and/or Board Certified Behavior Analysts (BCBAs referenced upthread). Someone who doesn't even know what autism is and how it presents should absolutely NEVER think they could run a FBA.
You're working at a school and apparently interacting with kids; you need to learn about ALL types of disabilities. Sure, learn about autism, but you should also learn about other disabilities that kids live with. There re kids with anxiety, OCD, NVLD and other disabilities that you can't tell by just looking at a kid.
A primer teachers use is Kids in the Syndrome Mix of ADHD, LD, Autism Spectrum, Tourette's, Anxiety, and More!: The one-stop guide for parents, teachers, and other professionals which provides an introductions to all types of kids and also, ways to interact with them and to see them beyond their labelled disability.
And I want to gently suggest that this may not be the right line of work for you since you're getting annoyed by children's behaviors. There will be many times you won't understand why ANY kid, neurotypical and otherwise, is misbehaving or melting down. If this is something that annoys you, you may not want to work with/near kids. And there's in blame or shame in that at all.
posted by yes I said yes I will Yes at 4:25 PM on October 14, 2016 [6 favorites]
This is pretty dangerous advice. Do NOT do this. FBAs are done by people with special education degrees and/or Board Certified Behavior Analysts (BCBAs referenced upthread). Someone who doesn't even know what autism is and how it presents should absolutely NEVER think they could run a FBA.
You're working at a school and apparently interacting with kids; you need to learn about ALL types of disabilities. Sure, learn about autism, but you should also learn about other disabilities that kids live with. There re kids with anxiety, OCD, NVLD and other disabilities that you can't tell by just looking at a kid.
A primer teachers use is Kids in the Syndrome Mix of ADHD, LD, Autism Spectrum, Tourette's, Anxiety, and More!: The one-stop guide for parents, teachers, and other professionals which provides an introductions to all types of kids and also, ways to interact with them and to see them beyond their labelled disability.
And I want to gently suggest that this may not be the right line of work for you since you're getting annoyed by children's behaviors. There will be many times you won't understand why ANY kid, neurotypical and otherwise, is misbehaving or melting down. If this is something that annoys you, you may not want to work with/near kids. And there's in blame or shame in that at all.
posted by yes I said yes I will Yes at 4:25 PM on October 14, 2016 [6 favorites]
Good question! I don't know that I have much to add; the links and info you've been given are a lot to chew through. But to the emotional side of it, speaking as the mom of a child with autism, and as a (completely unqualified) helper for autistic kids in preschool: I can understand why you might experience frustration or annoyance with some behaviors. I do not think it makes you unqualified for working with kids. Each kid's sensory experiences are differ and their reactions and coping strategies to those sensory experiences differ. I've found that I am most annoyed and frustrated when I don't understand, and that when I get some input from an OT or aide or whoever, and begin to understand some of the WHY behind the behaviors, it makes it so much easier for me to cope, and to offer assistance to the child (if it's needed).
I'm not sure what your position is, and whether you can ask and learn more about those kids. Would you be able to have a casual and politely curious conversation with the kids' aides or would that go against privacy regulations?
posted by bluebelle at 6:49 PM on October 14, 2016 [2 favorites]
I'm not sure what your position is, and whether you can ask and learn more about those kids. Would you be able to have a casual and politely curious conversation with the kids' aides or would that go against privacy regulations?
posted by bluebelle at 6:49 PM on October 14, 2016 [2 favorites]
Colfax etc has defined and discussed it well, I just wanted to add a book recommendation: Carly's Voice: Breaking Through Autism by Arthur Fleischmann with Carly Fleischmann.
posted by Lay Off The Books at 7:23 PM on October 14, 2016
posted by Lay Off The Books at 7:23 PM on October 14, 2016
"I understand that it's a spectrum, but from my (probably very poor research skills) it kind of sounds like it's everything and nothing."
This is actually kind-of an important insight! Autism is probably a collection of several issues with different etiologies (causes) but similar presentations (symptoms/behaviors/etc.). Every child with autism is different not just because every child is different, but because their autisms may be different. They tend to share certain kinds of things in common, but ASD presents in a huge variety of ways with a variety of constellations of symptoms. (And the "spectrum" issue -- for example, many 5-year-olds like to line up their toy cars in a particular order, both neurotypical and non-neurotypical. The "spectrum" helps you understand that it's not the behavior itself that differentiates NT and non-NT kids, but perhaps the insistence on that behavior to the exclusion of other forms of play, or the emotional attachment to it, or the repetitiveness of it, or the intensity of it, etc.) So you can't learn about "autism" per se; you can learn a variety of strategies for supporting kids with autism, and then you can learn about the kids individually and try various strategies.
To build on this: " every single one of them picked up on emotions and every. single. thing. that was happening in their environment. Many people thing that children with autism are not "there" or not present .... this is far from the truth. They can feel your frustration, and to some degree, are probably acting out from something that's going on in their environment that you can't perceive."
Alison Gopnik, in "The Philosophical Baby" (which is a super-interesting book although not on the topic of autism specifically), talks about how babies have a "lantern consciousness" where, because they don't KNOW what's important and what's not yet, they take in all stimuli from the environment without sorting (hence the phenomenon where your 3-year-old doesn't seem to be listening to a conversation you have with a friend, but can later reproduce every word you said). As you get older, the "lantern" becomes a "flashlight" where you focus intentional consciousness on specific things and automatically filter the rest out, and you're actually not capable of remembering a conversation that happened in the background when you were focused on something else. (And then there are lots of types of meditation that try to get you back to the "lantern" state!) Many people with autism seem to retain more of that "lantern" consciousness, where their minds take in all stimuli and it requires conscious effort and conscious executive thought to sort for the desired information. It's really common for kids with autism to need longer on academic tasks that they are extremely skilled at just because it takes them longer to sort through all the unnecessary information their brains are providing non-stop; when faced with a math word problem, a neurotypical kid is discarding the unnecessary information in the problem because they have a flashlight consciousness that's just highlighting the word problem; an autistic kid may be discarding unnecessary information not just from the problem itself but from the chair, the sound of the overhead fan, the sun passing behind clouds, their neighbor shuffling their feet, etc., because their more lantern-like consciousness is taking all of that in WHILE ALSO doing the word problem, so understandably it takes a little longer to perform all of that extra sorting. Which may also help you understand the sensory issues; if you can't "filter out" that sensory stimulus automatically with a "flashlight" consciousness, and you can't control the environment to make the sensory stimuli comfortable for you, you're going to be constantly devoting extra mental processing cycles to the sensory stimulus and it eventually overwhelms or distracts the executive processing function in the brain from the other things it's trying to do. (Which, again, happens to all little kids! It's a spectrum! We talk about kids getting "overstimulated" all the time, and then they tend to act out when their executive processing function is overwhelmed by all the excitement.)
If you are in the US, your local Easter Seals probably has an autism-support library with a lot of learning resources for parents and educators and others.
posted by Eyebrows McGee at 8:16 PM on October 14, 2016 [10 favorites]
This is actually kind-of an important insight! Autism is probably a collection of several issues with different etiologies (causes) but similar presentations (symptoms/behaviors/etc.). Every child with autism is different not just because every child is different, but because their autisms may be different. They tend to share certain kinds of things in common, but ASD presents in a huge variety of ways with a variety of constellations of symptoms. (And the "spectrum" issue -- for example, many 5-year-olds like to line up their toy cars in a particular order, both neurotypical and non-neurotypical. The "spectrum" helps you understand that it's not the behavior itself that differentiates NT and non-NT kids, but perhaps the insistence on that behavior to the exclusion of other forms of play, or the emotional attachment to it, or the repetitiveness of it, or the intensity of it, etc.) So you can't learn about "autism" per se; you can learn a variety of strategies for supporting kids with autism, and then you can learn about the kids individually and try various strategies.
To build on this: " every single one of them picked up on emotions and every. single. thing. that was happening in their environment. Many people thing that children with autism are not "there" or not present .... this is far from the truth. They can feel your frustration, and to some degree, are probably acting out from something that's going on in their environment that you can't perceive."
Alison Gopnik, in "The Philosophical Baby" (which is a super-interesting book although not on the topic of autism specifically), talks about how babies have a "lantern consciousness" where, because they don't KNOW what's important and what's not yet, they take in all stimuli from the environment without sorting (hence the phenomenon where your 3-year-old doesn't seem to be listening to a conversation you have with a friend, but can later reproduce every word you said). As you get older, the "lantern" becomes a "flashlight" where you focus intentional consciousness on specific things and automatically filter the rest out, and you're actually not capable of remembering a conversation that happened in the background when you were focused on something else. (And then there are lots of types of meditation that try to get you back to the "lantern" state!) Many people with autism seem to retain more of that "lantern" consciousness, where their minds take in all stimuli and it requires conscious effort and conscious executive thought to sort for the desired information. It's really common for kids with autism to need longer on academic tasks that they are extremely skilled at just because it takes them longer to sort through all the unnecessary information their brains are providing non-stop; when faced with a math word problem, a neurotypical kid is discarding the unnecessary information in the problem because they have a flashlight consciousness that's just highlighting the word problem; an autistic kid may be discarding unnecessary information not just from the problem itself but from the chair, the sound of the overhead fan, the sun passing behind clouds, their neighbor shuffling their feet, etc., because their more lantern-like consciousness is taking all of that in WHILE ALSO doing the word problem, so understandably it takes a little longer to perform all of that extra sorting. Which may also help you understand the sensory issues; if you can't "filter out" that sensory stimulus automatically with a "flashlight" consciousness, and you can't control the environment to make the sensory stimuli comfortable for you, you're going to be constantly devoting extra mental processing cycles to the sensory stimulus and it eventually overwhelms or distracts the executive processing function in the brain from the other things it's trying to do. (Which, again, happens to all little kids! It's a spectrum! We talk about kids getting "overstimulated" all the time, and then they tend to act out when their executive processing function is overwhelmed by all the excitement.)
If you are in the US, your local Easter Seals probably has an autism-support library with a lot of learning resources for parents and educators and others.
posted by Eyebrows McGee at 8:16 PM on October 14, 2016 [10 favorites]
FBAs are done by people with special education degrees and/or Board Certified Behavior Analysts (BCBAs referenced upthread). Someone who doesn't even know what autism is and how it presents should absolutely NEVER think they could run a FBA.
I couldn't agree more, yes I said yes I will Yes. That's why I left the link about the general idea of FBA's and the suggestion to observe some of the precursors to behaviour. I did not suggest that the OP conduct an FBA on their own and if that is the impression I left, then I need to be much clearer in my language.
posted by Thella at 2:23 AM on October 15, 2016 [1 favorite]
I couldn't agree more, yes I said yes I will Yes. That's why I left the link about the general idea of FBA's and the suggestion to observe some of the precursors to behaviour. I did not suggest that the OP conduct an FBA on their own and if that is the impression I left, then I need to be much clearer in my language.
posted by Thella at 2:23 AM on October 15, 2016 [1 favorite]
Your best resources will be ones made by autistic adults, as linked by Lexica. Remember that the goal is not to make autistic children appear "normal" but to support them in their own individual growth. Many autistic adults who undergo intensive ABA therapy end up with PTSD so I'd caution you against reading ABA material by non-autistic people.
Sensory overload leads to a meltdown the same way your computer trying to run too much stuff leads to a crash or overheating. It's too much going on and there's no escape (frequently because the too much going on makes it hard to remember that escape is an option, or because they don't have the ability to ask for help at that moment, or because the autistic person has been trained into compliance).
Also autistic traits are highly variable from day to day, moment to moment. Just because an autistic person is able to do a task one day does not mean they will be able to do it again the next. They're not willfully being difficult. They're probably frustrated by it too (since we like routine/predictability a lot!!). Be patient and assume that the kids are trying their hardest, even if it doesn't seem like that.
posted by buteo at 6:30 AM on October 15, 2016 [3 favorites]
Sensory overload leads to a meltdown the same way your computer trying to run too much stuff leads to a crash or overheating. It's too much going on and there's no escape (frequently because the too much going on makes it hard to remember that escape is an option, or because they don't have the ability to ask for help at that moment, or because the autistic person has been trained into compliance).
Also autistic traits are highly variable from day to day, moment to moment. Just because an autistic person is able to do a task one day does not mean they will be able to do it again the next. They're not willfully being difficult. They're probably frustrated by it too (since we like routine/predictability a lot!!). Be patient and assume that the kids are trying their hardest, even if it doesn't seem like that.
posted by buteo at 6:30 AM on October 15, 2016 [3 favorites]
I'm an adult with autism and I've also worked with autistic children.
For me, and for many "spectrum" folks I've talked to, the sensory issues are the most debilitating. What may be hard to understand, from the outside, is that sensations which might seem irritating (at worst) to you are actually painful to me.
When you hear me complain that the TV volume is too loud or too quiet, you might imagine that I'm dealing with a slight irritation. In fact, the longer I have to listen to it, the more painful it gets, and the pain happens pretty quickly: five-seconds of bad volume feels pretty bad; 30-seconds is agony. When I watch TV, I have to hold the remote and continually adjust the volume. I can't just deal with the too-loud commercial or the too-quiet whispered dialogue by telling myself it will be over, soon. That's like saying getting kicked in the head will be over soon.
I've always hated this part of myself, and, too often I try to "man up" and bear with it. But the internal pressure build, and, in less-than a minute, I have a pounding headache and an impending panic attack.
When I was in fifth grade, I always kept getting in trouble for having a messy desk. One day, the fluorescent bulb over my head kept flickering and flickering. It was driving me crazy. Each flicker was like an ice pick chiseling my skull. Finally, I said to the teacher, "Is there something we can do about the flickering light?"
With a smirk and a voice dripping with sarcasm, she said, "I'll tell you what: why don't you sit there, under the flickering light, and clean up your desk?" Decades later, I still remember this as an act of intense cruelty. I'm sure, from the teacher's point of view, she wasn't being all that cruel. A little caustic, perhaps, but not sadistic. But, to me, it was as if she's said "I'll tell you what: why don't you sit there and clean your desk--while I kick you repeatedly and pull out your teeth, one by one."
I'm 50-years-old, so I don't throw tantrums. But imagine how hard this stuff is as a child! Imagine a little version of me whose parents have said "Stop messing with the remote control!" Imagine people who "get" that the volume bothers me but who, judging by their own responses to irritants, say, "Come on! It's not that bad!" It's not. For them.
Volume is just one example. Every day, I spend a huge amount of energy making hundreds of adjustments to my environment, just to make it tolerable. I've become very skilled at doing this in ways no one notices. What you see as me just absent-mindedly crossing from one side of the room to another may be, in reality, my way of moving towards a brighter-lit area, because the dimness was making me feel like my head was going to explode.
I could give you dozens of other examples: clothes that are too tight, too loose, or too rumpled; temperatures that are too hot or too cold; crooked pictures on the wall; someone in the office repeatedly tapping his desk with a pencil ... All unendurable for me. Imagine yourself trying to cope with whatever irritates you and quadruple the irritation. If you and I are sitting in a room together, and you feel a little too warm, imagine how you'd feel if the temperature was four times higher. That's what I'm dealing with.
One more example: taste. I don't understand how someone can eat something he doesn't like. My friend John and I both hate mustard, but he can tolerate it. If someone offers him something with mustard in it, he can eat a little of it, just to be polite. To me, it seems as if he doesn't really hate mustard.
Eating mustard is, to me, like eating feces. Even the tiniest bit is absolutely disgusting. If I taste it, I will definitely gag and possibly vomit. It will probably seem as if I'm faking an over-the-top reaction, just to be dramatic. But that's just how my brain and body react. Again, imagine being a child, being told (by a "reasonable" grownup) that you can get up from the table once you've eaten just a couple of bites of feces.
Another thing that's really hard for me is sudden, unexpected transitions. My brain seems to be able to handle just context at a time, and it can't switch contexts rapidly. If I'm reading, it's as if my brain shuts off all conscious processes that aren't related to reading. If I'm in the middle of a sentence, and you ask me "What's for lunch?" I may literally not know what "lunch" means. It may take 25-seconds for the verbal parts of my brain to come back online.
Back when I first met my wife, we went to a party together, and I asked her if we could leave in two hours. She said, "Sure." I got involved in a poker game, and I was having a blast. But at exactly two-hours from when we arrived, I quit playing, found my wife, and said, "Let's go." She was confused. "You were having fun!" True, but it didn't matter. It was more important to me to stick to the plan than to stay and have fun.
I need clear boundaries: beginnings and ends. It makes me feel anxious and panicky when they say "I have to get going" and then linger for another 20 minutes--even if I love their company. When they say that have to leave, my brain starts to shut down the "hanging out with a friend" program. After a couple of minutes, it's totally shut down, and, since they're still there, I have to try to boot it up again, which takes a huge amount of energy. Imagine a child trying to explain this--or even trying to understand his own feelings.
When I worked with autistic kids, they would often tantrum if I said, "time to put the blocks away" and insist that they do it immediately. That's like yanking a thumb drive out of a PC, rather than ejecting it and letting it go through its shut-down process. If, instead, I said, "In five minutes, it will be time to put the blocks away," the day went much better.
Social data is another kind of sensory input: a particular potent kind. Our brains are optimized to suck it in and to care about it. A fleeting gaze into a stranger's eyes floods us with information. For many autistic people, it's too much, too fast. It's like being blasted with one of those fire hoses police use to quell rioters.
posted by grumblebee at 6:41 AM on October 15, 2016 [30 favorites]
For me, and for many "spectrum" folks I've talked to, the sensory issues are the most debilitating. What may be hard to understand, from the outside, is that sensations which might seem irritating (at worst) to you are actually painful to me.
When you hear me complain that the TV volume is too loud or too quiet, you might imagine that I'm dealing with a slight irritation. In fact, the longer I have to listen to it, the more painful it gets, and the pain happens pretty quickly: five-seconds of bad volume feels pretty bad; 30-seconds is agony. When I watch TV, I have to hold the remote and continually adjust the volume. I can't just deal with the too-loud commercial or the too-quiet whispered dialogue by telling myself it will be over, soon. That's like saying getting kicked in the head will be over soon.
I've always hated this part of myself, and, too often I try to "man up" and bear with it. But the internal pressure build, and, in less-than a minute, I have a pounding headache and an impending panic attack.
When I was in fifth grade, I always kept getting in trouble for having a messy desk. One day, the fluorescent bulb over my head kept flickering and flickering. It was driving me crazy. Each flicker was like an ice pick chiseling my skull. Finally, I said to the teacher, "Is there something we can do about the flickering light?"
With a smirk and a voice dripping with sarcasm, she said, "I'll tell you what: why don't you sit there, under the flickering light, and clean up your desk?" Decades later, I still remember this as an act of intense cruelty. I'm sure, from the teacher's point of view, she wasn't being all that cruel. A little caustic, perhaps, but not sadistic. But, to me, it was as if she's said "I'll tell you what: why don't you sit there and clean your desk--while I kick you repeatedly and pull out your teeth, one by one."
I'm 50-years-old, so I don't throw tantrums. But imagine how hard this stuff is as a child! Imagine a little version of me whose parents have said "Stop messing with the remote control!" Imagine people who "get" that the volume bothers me but who, judging by their own responses to irritants, say, "Come on! It's not that bad!" It's not. For them.
Volume is just one example. Every day, I spend a huge amount of energy making hundreds of adjustments to my environment, just to make it tolerable. I've become very skilled at doing this in ways no one notices. What you see as me just absent-mindedly crossing from one side of the room to another may be, in reality, my way of moving towards a brighter-lit area, because the dimness was making me feel like my head was going to explode.
I could give you dozens of other examples: clothes that are too tight, too loose, or too rumpled; temperatures that are too hot or too cold; crooked pictures on the wall; someone in the office repeatedly tapping his desk with a pencil ... All unendurable for me. Imagine yourself trying to cope with whatever irritates you and quadruple the irritation. If you and I are sitting in a room together, and you feel a little too warm, imagine how you'd feel if the temperature was four times higher. That's what I'm dealing with.
One more example: taste. I don't understand how someone can eat something he doesn't like. My friend John and I both hate mustard, but he can tolerate it. If someone offers him something with mustard in it, he can eat a little of it, just to be polite. To me, it seems as if he doesn't really hate mustard.
Eating mustard is, to me, like eating feces. Even the tiniest bit is absolutely disgusting. If I taste it, I will definitely gag and possibly vomit. It will probably seem as if I'm faking an over-the-top reaction, just to be dramatic. But that's just how my brain and body react. Again, imagine being a child, being told (by a "reasonable" grownup) that you can get up from the table once you've eaten just a couple of bites of feces.
Another thing that's really hard for me is sudden, unexpected transitions. My brain seems to be able to handle just context at a time, and it can't switch contexts rapidly. If I'm reading, it's as if my brain shuts off all conscious processes that aren't related to reading. If I'm in the middle of a sentence, and you ask me "What's for lunch?" I may literally not know what "lunch" means. It may take 25-seconds for the verbal parts of my brain to come back online.
Back when I first met my wife, we went to a party together, and I asked her if we could leave in two hours. She said, "Sure." I got involved in a poker game, and I was having a blast. But at exactly two-hours from when we arrived, I quit playing, found my wife, and said, "Let's go." She was confused. "You were having fun!" True, but it didn't matter. It was more important to me to stick to the plan than to stay and have fun.
I need clear boundaries: beginnings and ends. It makes me feel anxious and panicky when they say "I have to get going" and then linger for another 20 minutes--even if I love their company. When they say that have to leave, my brain starts to shut down the "hanging out with a friend" program. After a couple of minutes, it's totally shut down, and, since they're still there, I have to try to boot it up again, which takes a huge amount of energy. Imagine a child trying to explain this--or even trying to understand his own feelings.
When I worked with autistic kids, they would often tantrum if I said, "time to put the blocks away" and insist that they do it immediately. That's like yanking a thumb drive out of a PC, rather than ejecting it and letting it go through its shut-down process. If, instead, I said, "In five minutes, it will be time to put the blocks away," the day went much better.
Social data is another kind of sensory input: a particular potent kind. Our brains are optimized to suck it in and to care about it. A fleeting gaze into a stranger's eyes floods us with information. For many autistic people, it's too much, too fast. It's like being blasted with one of those fire hoses police use to quell rioters.
posted by grumblebee at 6:41 AM on October 15, 2016 [30 favorites]
I am lousy at hyper-linking so go to (http://mtautism.opiconnect.org) or search for the Montana Autism Education Project.
Once there, on the right-hand side there is a tag for "general education." That tag has 151 links to information about autism spectrum disorders and educating students with autism. It can be easier to follow links than going to the library to read just one book.
posted by ITravelMontana at 8:07 AM on October 15, 2016
Once there, on the right-hand side there is a tag for "general education." That tag has 151 links to information about autism spectrum disorders and educating students with autism. It can be easier to follow links than going to the library to read just one book.
posted by ITravelMontana at 8:07 AM on October 15, 2016
Grumblebee's answer nails it. Everything from sight to sound to taste is just too much, ambiguity/lack of definitive structure/rules is torture, and this makes the world exhausting and traumatic on a daily basis. Every day, as an adult with HFA, I reboot and have to face a world that makes no sense to me, is loud, unpredictable. People are unpredictable and so "special interests" I can control become the focus of my world. I had what SEEMED like tantrums, but have been labeled "meltdowns" (or really just being overwhelmed and not being able to reason yourself out of the panic/anger/sadness etc. that builds up) until I was actually diagnosed a year or so ago. Undertanding why my brain was just slightly off was a game changer but as a child my world was a daily struggle of "why does everything seem off and why do people seem to hate me so much? What am I doing wrong?" So I just hid. A lot. And didn't speak to anyone, even though my capacity for language and reading and perception surpassed my peers. I could solve complex problems, was hyperlexic, etc etc but sometimes I forgot to put my clothes on correctly or I was messy or I wanted to play with bugs more than I wanted to play sports, and these things just didn't OCCUR to me as whatever else I was thinking/doing at the time. It was just easier to not do or say anything than to constantly fuck up, get yelled at/punished/bullied, etc. by adults and children alike for reasons I didn't understand and that no one could explain to me on concrete terms that I could change. You wind up feeling like some broken alien.
So yeah. If you don't want to be "annoyed" by autistic children maybe try engaging them as individuals and accepting that they aren't going to behave as a neurotypical child for reasons you will never understand. Ask them about their special interests, if they will speak to you. What they want and need is understanding, patience, and relief.
posted by Young Kullervo at 10:10 AM on October 15, 2016 [5 favorites]
So yeah. If you don't want to be "annoyed" by autistic children maybe try engaging them as individuals and accepting that they aren't going to behave as a neurotypical child for reasons you will never understand. Ask them about their special interests, if they will speak to you. What they want and need is understanding, patience, and relief.
posted by Young Kullervo at 10:10 AM on October 15, 2016 [5 favorites]
I'm not sure exactly what your role is in dealing with children at your school, but these students may have either an IEP or 504 plan which specifically lay out how to best work with these specific students. Even as a parent of a child with a 504, I am unclear on which school personnel have access to them, but (also as a parent), I would want all staff who deal with children to be able to do so with access to all useful information. This isn't really a question for the Internet-- it's a question for your supervisor at the school. You should have all the support you need to work effectively with the kids in your care, and your supervisor should help you get any training or information you need to do so.
posted by instamatic at 11:38 AM on October 15, 2016
posted by instamatic at 11:38 AM on October 15, 2016
Article in today's Guardian - Study offers potential breakthrough in care of children with autism
posted by Thella at 6:30 PM on October 25, 2016
posted by Thella at 6:30 PM on October 25, 2016
This thread is closed to new comments.
So autistic kids and adults are frequently very sensitive to noise, bright lights, fabrics or clothes, smells and the textures of food. I think one of the reasons why an autistic 5 year-old throws a different sort of tantrum than your average 5 year-old is because the autistic 5 year-old doesn't necessarily have the language to explain what is bothering him. Can you imagine how frustrating it would be to have something really upsetting you or hurting you and having no way to make the people around you understand what it is?
In terms of communication issues, autistic people have trouble developing language skills, reading other people's faces, trouble remembering that other people are thinking, and because of those things, they have trouble reading basic social cues and sometimes they have trouble understanding what is appropriate in a given situation. Autism comes in a spectrum, because things like being able to read people's faces and developing language skills come on a spectrum. At the high-end, someone might just come across as a bit awkward and they might have learned to talk a little later than the average person. On the very severe end, some autistic people never learn how to talk and have trouble interacting with anyone. The kids you're seeing in school are probably somewhere in the middle spectrum and possibly in the low end of the spectrum.
If you want something to read, you should find Temple Grandin's book, Thinking in Pictures (My Life with Autism). She's a very smart woman and it's a fascinating book.
posted by colfax at 2:31 PM on October 14, 2016 [6 favorites]