This is a tough question to answer with a short number of words, because it's a complex issue, but here goes an attempt to keep it brief:
We interact with the world via our seven senses - sight, smell, taste, hearing, touch, vestibular and proprioceptive awareness. (I will give more details about these in other articles).
This sensory input is vital for survival - it gives the information upon which we decide on fight or flight. It tells us if we're too cold or hot, when we're being loud, if someone has just touched us in a caring or savage way. A healthy sensory processing system does this effectively.
Someone with Sensory Integration Dysfunction can have a few challenging things happening instead.
- overload - too much sensory information going in for the brain to tolerate. Usually represented by a meltdown.
- mistranslation - light touch can be painful, broken bones might go unnoticed, talking loudly can be misunderstood as angry yelling and in some less common cases the senses get totally jumbled (e.g.: sounds might have colour!)
- difficulties filtering sensory info - someone with auditory sensitivities in a classroom will hear the cacophony of these things: the fan on the ceiling, the clock ticking on the wall, the teacher booming, Suzie whispering to Kate, paper rustling, pens and pencil scratching, the terrible sound of textas, the chattering from three classrooms down, the birds tweeting outside, and any number of other sounds. Blocking out the unnecessary noises comes naturally to the rest of us because our brain's filtering system works, but it's impossible for this person. So focusing on just one of the sounds as more important than the others (such as the teacher's voice) requires a huge conscious (exhausting) effort of concentration. (Imagine doing that all day at school - now imagine the same degree of bombardment of information through the other senses at the same time!)
- modulation problems - hyper- and hypo-sensitivities to sensory stimuli. Sometimes these will flip back and forth without notice, seriously affecting behaviour as the individual seeks or avoids various sensory input in an attempt to manually modulate.
- anxiety - it's almost impossible to avoid any anxiety when living with SID, and usually the more anxiety an individual has to manage, the more difficult it is to deal with SID (and vice versa). Teaching anxiety management techniques is imperative, as the two things necessarily interact.
Questions
If you have a question, please feel free to ask it in a comment at the end of this post. Hopefully I'll be able to come up with some ideas to help.
Disclaimer: I'm not a doctor or a psychologist. I don't claim to be a professional expert and I cannot diagnose your child (or your husband). I don't have technical/university qualifications to back me up.
However, I am very experienced. I have lived with a person with Asperger's for 13 years (my son). I have three cousins on the autism spectrum, an uncle, and I suspect my maternal grandmother as well. I also used to be a swimming teacher, and worked with a number of children with autism, ADHD, extreme anxiety, dyspraxia, cerebral palsy, muscular dystrophy, epilepsy and various other developmental concerns. Aside from that, throughout my son's childhood I have spent a lot of my time volunteering in schools in areas of literacy, academic support and challenging behaviour - so far this has been with kids aged 4-13. I have met many children, dealt with many behaviours and seen many classroom settings. My son has now attended four different schools and so we have encountered four totally different school cultures. I have a library of books about Autism and child development, and I have read most of them.
In all that time, I have had loads of parents and teachers ask me gazillions of questions, and the truth is, I really enjoy helping figure out the solution to whatever challenge might be presented. I love the idea that I might be making someone's life a little bit easier - whether that be the child, parents, or teachers.
You will know from reading other material on here whether you want the kind of answers I am likely to give. All I can do is promise that I will do the best I can for you, with the resources I have available to me. Hopefully that will be enough!
Disclaimer: I'm not a doctor or a psychologist. I don't claim to be a professional expert and I cannot diagnose your child (or your husband). I don't have technical/university qualifications to back me up.
However, I am very experienced. I have lived with a person with Asperger's for 13 years (my son). I have three cousins on the autism spectrum, an uncle, and I suspect my maternal grandmother as well. I also used to be a swimming teacher, and worked with a number of children with autism, ADHD, extreme anxiety, dyspraxia, cerebral palsy, muscular dystrophy, epilepsy and various other developmental concerns. Aside from that, throughout my son's childhood I have spent a lot of my time volunteering in schools in areas of literacy, academic support and challenging behaviour - so far this has been with kids aged 4-13. I have met many children, dealt with many behaviours and seen many classroom settings. My son has now attended four different schools and so we have encountered four totally different school cultures. I have a library of books about Autism and child development, and I have read most of them.
In all that time, I have had loads of parents and teachers ask me gazillions of questions, and the truth is, I really enjoy helping figure out the solution to whatever challenge might be presented. I love the idea that I might be making someone's life a little bit easier - whether that be the child, parents, or teachers.
You will know from reading other material on here whether you want the kind of answers I am likely to give. All I can do is promise that I will do the best I can for you, with the resources I have available to me. Hopefully that will be enough!
Patience Please
A deficit in executive functioning can cause some interpersonal communication issues. I regularly hear, "Mum?!" as an introduction to conversation (just like all mothers). I of course answer "Yes". Then there is a looooong pause (several beats) while he tries to organise his thoughts into a coherent sentence or question.
I have to really restrain myself sometimes from jumping in impatiently and telling him to hurry up (which I will admit I sometimes say anyway, I'm human after all!). If I do jump in without thinking, he has to start over and it takes him twice as long to communicate, so effectively I have made the situation more difficult for myself by being impatient.
Once, when he was about nine years old, he approached a teacher by name. She answered him, and then he said, "Uhm..." while he was gathering his thoughts together. She immediately said, "I don't listen to people who say uhm," turned on her heel, and walked off, leaving him confused and sad.
I know, I know - you're incensed to read that story (and if you're not, please read it again). Let me tell you, it certainly fires me up to share it. I can't bear the way adults so often disrespect children.
But do you know what? Instead of getting all enraged, I like to wonder to myself what wonderful warm little moment that mean-spirited woman cheated herself out of that day, all because she couldn't wait a few measly seconds.
I have to really restrain myself sometimes from jumping in impatiently and telling him to hurry up (which I will admit I sometimes say anyway, I'm human after all!). If I do jump in without thinking, he has to start over and it takes him twice as long to communicate, so effectively I have made the situation more difficult for myself by being impatient.
Once, when he was about nine years old, he approached a teacher by name. She answered him, and then he said, "Uhm..." while he was gathering his thoughts together. She immediately said, "I don't listen to people who say uhm," turned on her heel, and walked off, leaving him confused and sad.
I know, I know - you're incensed to read that story (and if you're not, please read it again). Let me tell you, it certainly fires me up to share it. I can't bear the way adults so often disrespect children.
But do you know what? Instead of getting all enraged, I like to wonder to myself what wonderful warm little moment that mean-spirited woman cheated herself out of that day, all because she couldn't wait a few measly seconds.
Common reasons kids avoid getting started
There are lots of reasons why students (not just people with Autism/Asperger's) have trouble getting started. Below are a few clues.
Fear of failure - We all hate feeling like a failure. Young people/adults/children refuse to partake of activities often because they are afraid to be laughed at, or even simply afraid of finding out they aren't very good at something.
Fear of success - my son once told me that he didn't want to excel at school, because that would set up an expectation of success level from the adults at school - an expectation he didn't feel he could consistently work to. Sometimes people are also afraid of success because they don't have a concept of what that successful experience could look/feel like. The unknown terrifies them and thus holds them back.
It's all too much Type 1 - the student could be in overwhelm for any number of reasons. Try to learn what this looks like and be alert to when it might be happening. Work out a management strategy with your student, such as giving them a ten minute break from the noisy classroom so that they can re-group. Wherever possible, try to incorporate strategies like this as preventative steps rather than reactive solutions. This gives the child some control over their own behaviour management as well.
It's all too much Type 2 - sometimes the task is just too complicated or detailed for your student. Or there could be too many steps involved. Quite often students on the spectrum will have fine motor delay, which will mean they are slower to get work done. If the task seems too big or time-consuming, they will avoid it. In this case it's a good idea to cut the task down into smaller chunks (you teachers know that word "chunking"!), and give your Aspie student a reduced list of steps to achieve. How much you cut this down will depend on your student, but a good rule of thumb is to take the chunking you think is age appropriate and double the number of chunks (i.e.: create smaller bites to chew). You might even need to give them one small step at a time, as the awareness of the second step could be enough of a distraction to prevent commencement. NB: I have had a teacher say that they don't like this idea, as it felt like he was treating the student as someone much younger, and he didn't think that was okay. But please remember, it's never condescending to give your student what they need in order to learn. You're doing them a favour by adapting to their needs instead of forcing them into your worldview, and they don't know (or care) what level of chunking is age-appropriate, so it's really (honestly) a good thing for you to do it. Very small chunks could mean that your student finally experiences success. Isn't it exciting to think you could be the catalyst for that experience?
It's all too much Type 3 - Your student might have poor executive functioning (ability to plan and organise their work/thoughts/body). Around age 7, my son found this so difficult that when he was asked to sit and write something, he would sit with a piece of paper in front of him, behaving perfectly, but he would write nothing. As it turned out, the reason he had not begun was because it had not occurred to him to bring a pencil to the table, and he couldn't figure out what was missing when it came time to get started. This is a very intelligent child who simply could not work out what to do, because he couldn't think that many steps ahead. So you might find that with your student, you will have to do a lot of organising for them. Your objective is to build independence though, so try to give them systems to follow, rather than hand-holding through every step (although you will have to be diligent and patient as they build the neural pathways to be able to do this for themselves). A simple idea might be to have checklists stuck to their desk (such as 'What equipment do I need?'), so that they can work through a list of what to do next for fundamental tasks like preparing to write. But remember to be patient. It will take a long time and a lot of support for this skill to find its place.
Didn't catch all the instructions - a student with attention difficulties (this is also a common side effect of sensory overwhelm), might only hear part of the instructions. This student will frequently be unwilling to ask you to tell them again, because they have often found themselves being disciplined for not listening properly. Often instructions called out from the front of the classroom don't work for the student with Autism, because all that student hears is "yelling". After instructing your class, approach this student and (rather than repeating everything you just said), ask her to tell you in her own words what she needs to get done. This will give you some awareness of what she has understood, and an opportunity to clear up any miscommunications. It is also helpful to list instructions on the board as a ready reference, as your student might not be able to retain more than one step at a time.
Perfectionism - we see perfectionism in young children all the time, and it's a tough one to break, but it's vital that we do, because the anxiety related to this can completely prevent commencement and cause much bigger problems down the track. This is fear of failure at its worst. I recommend having a Mistakes Are Good Because We Learn From Them whole classroom culture. Also, many teachers make kids earn a pen licence (they must be able to write to a certain quality before they are allowed to use a pen for their classwork). I recommend doing the complete opposite, because kids can't erase pen mistakes, so they can get used to seeing that they aren't the only ones who have errors in their work. Another positive side-effect is that teachers can see what errors individual students are making, discover gaps in learning and plan future classes accordingly. Also, the child with fine-motor delay is rarely if ever going to meet the standard and thus earn the pen licence. Do you really want them to feel so bad by pointing out that they can never, ever measure up to their peers?
Sensory reasons - sometimes you will have a student on the spectrum who will refuse to start an activity or join in, but there doesn't appear to be any rational reason for this decision, and they aren't telling you what's wrong. Look for reasons such as those outlined above, but also be sure to ask a clear question such as, "Is there something specific about this activity which is preventing you from joining in?" My son has an irrational fear of styrofoam (related to the squeaky noise it makes). As articulate and verbal as he is, when faced with the prospect of an activity involving styrofoam, he will completely shut down and refuse to even enter the room, quickly losing the capacity to explain what is wrong, without adult intervention and assistance. If the issue is a fear like this, there is no reason worth forcing them to face the fear in front of their peers. Let it go, find another activity for this student, or change what you are doing in the classroom so as to include them.
And don't forget - it's imperative that we ask the direct questions, or we'll never really be sure we have the correct answers.
Please note: these are not ALL the possible reasons for someone having difficulty getting started, and any assumptions based on the following could turn out to be incorrect for the individual student you're dealing with. It is absolutely vital that we parents and teachers be respectful enough to ask them. You never know, that one simple question might save months or even years of angst.
Fear of failure - We all hate feeling like a failure. Young people/adults/children refuse to partake of activities often because they are afraid to be laughed at, or even simply afraid of finding out they aren't very good at something.
Fear of success - my son once told me that he didn't want to excel at school, because that would set up an expectation of success level from the adults at school - an expectation he didn't feel he could consistently work to. Sometimes people are also afraid of success because they don't have a concept of what that successful experience could look/feel like. The unknown terrifies them and thus holds them back.
It's all too much Type 1 - the student could be in overwhelm for any number of reasons. Try to learn what this looks like and be alert to when it might be happening. Work out a management strategy with your student, such as giving them a ten minute break from the noisy classroom so that they can re-group. Wherever possible, try to incorporate strategies like this as preventative steps rather than reactive solutions. This gives the child some control over their own behaviour management as well.
It's all too much Type 2 - sometimes the task is just too complicated or detailed for your student. Or there could be too many steps involved. Quite often students on the spectrum will have fine motor delay, which will mean they are slower to get work done. If the task seems too big or time-consuming, they will avoid it. In this case it's a good idea to cut the task down into smaller chunks (you teachers know that word "chunking"!), and give your Aspie student a reduced list of steps to achieve. How much you cut this down will depend on your student, but a good rule of thumb is to take the chunking you think is age appropriate and double the number of chunks (i.e.: create smaller bites to chew). You might even need to give them one small step at a time, as the awareness of the second step could be enough of a distraction to prevent commencement. NB: I have had a teacher say that they don't like this idea, as it felt like he was treating the student as someone much younger, and he didn't think that was okay. But please remember, it's never condescending to give your student what they need in order to learn. You're doing them a favour by adapting to their needs instead of forcing them into your worldview, and they don't know (or care) what level of chunking is age-appropriate, so it's really (honestly) a good thing for you to do it. Very small chunks could mean that your student finally experiences success. Isn't it exciting to think you could be the catalyst for that experience?
It's all too much Type 3 - Your student might have poor executive functioning (ability to plan and organise their work/thoughts/body). Around age 7, my son found this so difficult that when he was asked to sit and write something, he would sit with a piece of paper in front of him, behaving perfectly, but he would write nothing. As it turned out, the reason he had not begun was because it had not occurred to him to bring a pencil to the table, and he couldn't figure out what was missing when it came time to get started. This is a very intelligent child who simply could not work out what to do, because he couldn't think that many steps ahead. So you might find that with your student, you will have to do a lot of organising for them. Your objective is to build independence though, so try to give them systems to follow, rather than hand-holding through every step (although you will have to be diligent and patient as they build the neural pathways to be able to do this for themselves). A simple idea might be to have checklists stuck to their desk (such as 'What equipment do I need?'), so that they can work through a list of what to do next for fundamental tasks like preparing to write. But remember to be patient. It will take a long time and a lot of support for this skill to find its place.
Didn't catch all the instructions - a student with attention difficulties (this is also a common side effect of sensory overwhelm), might only hear part of the instructions. This student will frequently be unwilling to ask you to tell them again, because they have often found themselves being disciplined for not listening properly. Often instructions called out from the front of the classroom don't work for the student with Autism, because all that student hears is "yelling". After instructing your class, approach this student and (rather than repeating everything you just said), ask her to tell you in her own words what she needs to get done. This will give you some awareness of what she has understood, and an opportunity to clear up any miscommunications. It is also helpful to list instructions on the board as a ready reference, as your student might not be able to retain more than one step at a time.
Perfectionism - we see perfectionism in young children all the time, and it's a tough one to break, but it's vital that we do, because the anxiety related to this can completely prevent commencement and cause much bigger problems down the track. This is fear of failure at its worst. I recommend having a Mistakes Are Good Because We Learn From Them whole classroom culture. Also, many teachers make kids earn a pen licence (they must be able to write to a certain quality before they are allowed to use a pen for their classwork). I recommend doing the complete opposite, because kids can't erase pen mistakes, so they can get used to seeing that they aren't the only ones who have errors in their work. Another positive side-effect is that teachers can see what errors individual students are making, discover gaps in learning and plan future classes accordingly. Also, the child with fine-motor delay is rarely if ever going to meet the standard and thus earn the pen licence. Do you really want them to feel so bad by pointing out that they can never, ever measure up to their peers?
Sensory reasons - sometimes you will have a student on the spectrum who will refuse to start an activity or join in, but there doesn't appear to be any rational reason for this decision, and they aren't telling you what's wrong. Look for reasons such as those outlined above, but also be sure to ask a clear question such as, "Is there something specific about this activity which is preventing you from joining in?" My son has an irrational fear of styrofoam (related to the squeaky noise it makes). As articulate and verbal as he is, when faced with the prospect of an activity involving styrofoam, he will completely shut down and refuse to even enter the room, quickly losing the capacity to explain what is wrong, without adult intervention and assistance. If the issue is a fear like this, there is no reason worth forcing them to face the fear in front of their peers. Let it go, find another activity for this student, or change what you are doing in the classroom so as to include them.
And don't forget - it's imperative that we ask the direct questions, or we'll never really be sure we have the correct answers.
How is Asperger's pronounced?
Asperger's Syndrome is named after Hans Asperger, a very clever fellow who, in 1944, recorded a set of notes about the behaviours of some boys he had as patients at the time. These boys presented as meeting some, but not all of the criteria for a diagnosis of Autism.
Hans Asperger's name is pronounced with a hard G (as in gory, gross and green, NOT as in aubergine). So is Asperger's Syndrome, as it is named after the man himself.
If you have trouble remembering this in the moment, think to yourself,
"Ass Burgers" - then smile, and pronounce it properly. I can tell you on behalf of my child with Asperger's, who identifies with the title with great pride, it drives him crazy that so many people say it incorrectly.
It's a very small thing, but it matters more than you probably imagine, so thanks for taking the time to make an effort with it. :D
Hans Asperger's name is pronounced with a hard G (as in gory, gross and green, NOT as in aubergine). So is Asperger's Syndrome, as it is named after the man himself.
If you have trouble remembering this in the moment, think to yourself,
"Ass Burgers" - then smile, and pronounce it properly. I can tell you on behalf of my child with Asperger's, who identifies with the title with great pride, it drives him crazy that so many people say it incorrectly.
It's a very small thing, but it matters more than you probably imagine, so thanks for taking the time to make an effort with it. :D
What is Aspergers?
People ask me this a lot - they hear terms like Autism and Asperger's bandied about, but they don't really know the differences, and unless they have had experience with people on the Autism Spectrum, they don't really have a field of reference other than the "Rain Man" extreme.
This is what I tell them:
We are all born with varying skill sets - different strengths, weaknesses and talents. Some of us are fantastic at sports, some are good at maths, others are good at drama. Some people have a talent in music and can learn any instrument effortlessly. Some people have a penchant for languages.
On the other hand we all have areas we are weak in as well. We might need a tutor for maths, or we might avoid the stage. We can choose not to dabble in languages, and we can seek support in other areas of academic weakness.
People with Aspergers/Autism are no different in that regard. They are born with different skill sets just like anyone else. They are not all the same as each other, any more than neurotypicals are all the same as each other. The brain is wired differently, and there are some commonalities in thinking processes, but every person on the spectrum is also an individual with their own specialties to offer. They have some common areas of strength or difficulty, and also often have talents not seen in neurotypical people.
Aspergers includes but is not limited to:
- being utterly honest and committed to the truth
- having a wonderful sense of humour
- creativity
- unshakeable loyalty
- having a unique world view
- valuing non-conformity
- having absolute compassion for others who need it
- enjoying a different way of thinking
- attention to detail
- capacity to spot the micro
- an extraordinary ability to focus for long periods on areas of special interest
- enjoying a vivid imagination
I actually personally object to the word Disorder, because in my opinion it's all relative. A person on the Autism spectrum doesn't see themselves as disordered any more than you see yourself as disordered. Just because the typical person has a basic skill set which can be considered somewhat across the board, and the 1% who are on the spectrum have a different skill set, doesn't mean that they should be considered to be "disordered". It's arrogance beyond the pale, IMO.
In my view, the only reason people consider Asperger's to be a disorder, is related to the fact that social skills development doesn't come naturally. While the neurotypical child begins to naturally pick up on social cues by about three years old, people with Asperger's need constant monitoring and tutoring and assistance in this area as an ongoing process.
The pleasant reality for the neurotypical person is that we can choose not to do languages at school, or to get a tutor for maths, and once we've learned those skills (or rejected them), we don't need to re-learn them in order to survive. However a person on the Spectrum needs to constantly work on their social skills in order to survive in a world full of neurotypicals with high expectations.
The truth is, if it wasn't for the existence and demands of the neurotypicals, the person on the spectrum wouldn't have a problem at all. In fact, I challenge you to consider, they don't have a problem or disorder. Rather, neurotypicals and our expectations are the problem - we expect a lot from people socially, and we encompass the majority of the population. Therefore people with Asperger's/Autism suddenly develop a "problem" because they are different to us.
As Tony Attwood says, people with Asperger's are "different, not defective."
Tony Attwood: About Asperger's
While it is not necessarily useful to split hairs over the differences between Autism/Asperger's/High-Functioning Autism, people do ask, so to clarify a couple of the simpler technicalities:
Tony Attwood is well known for reminding us that the difference between Asperger's and High Functioning Autism is, very simply, how they are spelled.
In simple terms, Asperger's and Autism are usually separated in the diagnostic process by the presence of delay in language development. Language delay is common with Autism, whereas with Asperger's, vocabulary is often more advanced than in the average child (although comprehension of and appropriate use of these advanced words isn't always apparent).
This is what I tell them:
We are all born with varying skill sets - different strengths, weaknesses and talents. Some of us are fantastic at sports, some are good at maths, others are good at drama. Some people have a talent in music and can learn any instrument effortlessly. Some people have a penchant for languages.
On the other hand we all have areas we are weak in as well. We might need a tutor for maths, or we might avoid the stage. We can choose not to dabble in languages, and we can seek support in other areas of academic weakness.
People with Aspergers/Autism are no different in that regard. They are born with different skill sets just like anyone else. They are not all the same as each other, any more than neurotypicals are all the same as each other. The brain is wired differently, and there are some commonalities in thinking processes, but every person on the spectrum is also an individual with their own specialties to offer. They have some common areas of strength or difficulty, and also often have talents not seen in neurotypical people.
Aspergers includes but is not limited to:
- being utterly honest and committed to the truth
- having a wonderful sense of humour
- creativity
- unshakeable loyalty
- having a unique world view
- valuing non-conformity
- having absolute compassion for others who need it
- enjoying a different way of thinking
- attention to detail
- capacity to spot the micro
- an extraordinary ability to focus for long periods on areas of special interest
- enjoying a vivid imagination
I actually personally object to the word Disorder, because in my opinion it's all relative. A person on the Autism spectrum doesn't see themselves as disordered any more than you see yourself as disordered. Just because the typical person has a basic skill set which can be considered somewhat across the board, and the 1% who are on the spectrum have a different skill set, doesn't mean that they should be considered to be "disordered". It's arrogance beyond the pale, IMO.
In my view, the only reason people consider Asperger's to be a disorder, is related to the fact that social skills development doesn't come naturally. While the neurotypical child begins to naturally pick up on social cues by about three years old, people with Asperger's need constant monitoring and tutoring and assistance in this area as an ongoing process.
The pleasant reality for the neurotypical person is that we can choose not to do languages at school, or to get a tutor for maths, and once we've learned those skills (or rejected them), we don't need to re-learn them in order to survive. However a person on the Spectrum needs to constantly work on their social skills in order to survive in a world full of neurotypicals with high expectations.
The truth is, if it wasn't for the existence and demands of the neurotypicals, the person on the spectrum wouldn't have a problem at all. In fact, I challenge you to consider, they don't have a problem or disorder. Rather, neurotypicals and our expectations are the problem - we expect a lot from people socially, and we encompass the majority of the population. Therefore people with Asperger's/Autism suddenly develop a "problem" because they are different to us.
As Tony Attwood says, people with Asperger's are "different, not defective."
Tony Attwood: About Asperger's
While it is not necessarily useful to split hairs over the differences between Autism/Asperger's/High-Functioning Autism, people do ask, so to clarify a couple of the simpler technicalities:
Tony Attwood is well known for reminding us that the difference between Asperger's and High Functioning Autism is, very simply, how they are spelled.
In simple terms, Asperger's and Autism are usually separated in the diagnostic process by the presence of delay in language development. Language delay is common with Autism, whereas with Asperger's, vocabulary is often more advanced than in the average child (although comprehension of and appropriate use of these advanced words isn't always apparent).
You really think that?!
A teacher said a couple of interesting things to me the other day, and I'm so glad he did, because it gave me a chance to present to him a different way of looking at things. The teacher concerned is passionate about teaching, about reaching children and having a positive impact. He's intelligent and obviously thinks hard about the best ways to teach, so please don't think for a minute that this kind of thinking is far off the beaten track.
These statements below both might seem a lot like reasonable, rational, logical statements, but the reality is that they are in fact simplistic, unreasonable, illogical, inequitable, lacking in acceptance and quite frankly, very ill-informed.
Sadly, this is VERY common thinking. Teachers everywhere expect the child with Autism/Aspergers in the mainstream classroom to adapt and modify constantly in order to fit in. Teachers have lots of good reasons for this thinking, not least of which is that their classroom will be easier to manage if they "can just fix that Aspie". And sure, the world isn't filled with people with Autism, so there are times when the person with an ASD needs to fumble their way through neurotypical settings and adapt as best they can.
But what this hegemonic thinking chooses to forget is that Aspergers, in many ways, could be looked upon as a dysfunction of the ability to adapt. Adapting to change, to lack of predictability, to the world around them is extraordinarily difficult for people with Autism. And they are surrounded by neurotypicals who can change pace or switch channels faster and more naturally than they can change their underwear. But still the weight is on the shoulders of the individual with Autism to do all the adapting and changing to the neurotypical world.
Would you say the same thing to the student with Cerebral Palsy or spinal injury? (ie: You can't walk properly, but the world is filled with people who can, so you'd better start learning how to do it better. And because you don't walk like the rest of us, we feel awkward and uncomfortable when we watch you, so can you make more effort to fix that please?)
That's the kind of thinking which used to keep wheelchair bound people out of education facilities, restaurants and malls because of steps and inaccessible doorways. It's also the kind of thinking which meant little kids with CP used to be placed into nursing homes with dying old people.
Would you say the same thing to a deaf/blind student? (ie: You can't see/hear properly, but everyone around you can, so you'd better adapt lickity-split!....")
If we thought this way, we wouldn't have those noisy, vibrating pedestrian crossing buttons which keep people alive on busy roads.
What about a student with dyslexia? (ie: "We know those words are moving around on the page for you, but hey, it's not a problem for everyone else, so you'd better adapt to how we do things, because it's too inconvenient for us that you're different!")
We all know this is unreasonable thinking and that we need to make adaptations to enable all students to have an enjoyable and successful education. The message here is simple - students with Autism are entitled to the same level of regard.
The position that people on the Autism Spectrum must adapt to the world around them simply because everyone else in it doesn't have the same needs as him represents exclusivity and absolutely lacks in empathy and compassion for the difficulties faced.
It's tragically ironic to me that we talk about Theory of Mind (the ability to put yourself into someone else's shoes and imagine their experiences) and Aspies' challenges around this, but much of the time we refuse to see things from their perspective, and instead try to find a way to mould them to fit into our neurotypical way of seeing and doing things.
Maybe we could consider instead, showing a little empathy and creating a space which makes them comfortable enough to excel and experience true happiness.
A moment in an Aspie's shoes:
The student with Autism/Aspergers is probably very anxious.
The student with Autism/Aspergers is probably in sensory overload most of the time they are at school.
The student with Aspergers finds it difficult to adapt.
The student with Aspergers isn't necessarily aware that they are annoying someone or disrupting the class. They won't necessarily see people's reactions.
The student with Aspergers has no idea what everyone wants from them most of the time, or why they are in trouble. (How are they supposed to know what adaptations to make?)
Allow the person with an ASD to be themselves in your classroom.
Think about it this way. The student with Aspergers struggles to understand the social communication around them. If you ask them what they think of it, they'll tell you how they don't get the point of all that stuff. It is also virtually impossible to motivate someone on the Spectrum to do something which doesn't suit their outlook on the world. If they can't logically see a reason to do something, then they simply won't, because to them it defies common sense to go down that path. (I suspect there are plenty of neurotypical people who would feel the same way if they were being told to do something which made no sense as well).
...it's a very illogical way to approach educating them...
This by definition means that they are highly unlikely to do the adapting that you are asking of them. So it's a very illogical way to approach educating them. Do you think that it's fair to set them and yourself up for such an epic failure like this? In the long term, quite seriously, it's far simpler to just educate the other students about Autism, and make changes which allow the person with an ASD to be themselves in your classroom.
An afterthought: If you think you've managed to fix your mainstreamed student with Aspergers, because they're no longer disrupting the class, have a think about whether your behaviour management strategies might be suppressing rather than allowing them to be who they are. How happy are they really? Are they just trying to please you by being well-behaved, but not getting any school work done or making any friends? Are there any other similar incongruous pieces of data in the student's experience at school?
Just because they're behaving, doesn't mean they're learning, achieving their potential or, most importantly, happy. It usually just means they want to please you, and sadly, they'll even harm themselves to achieve that.
Autism isn't something you can catch... It's not something you develop because of your environment.
First, Autism isn't something you can catch, nor is it something you can get from sitting in front of a computer or playing too many video games. It's not something you develop because of your environment.
Any inference that environment causes Aspergers/Autism is just another form of parent-blame, and is archaic, unhelpful thinking, like the label of "Refrigerator Mother" from the 1950s.
The increased diagnosis of Autism/High-Functioning Autism/Aspergers is due largely to increased awareness. It wasn't until 1994 that Aspergers Syndrome was added to the DSM IV (the official, internationally accepted diagnostic criteria for mental illness and developmental disorders). We also know now that statistically about 1 in 100 people has Autism. So it stands to reason that once a label was available for Aspergers, there would be a helluva lot more diagnosing happening from that point forward. (Coincidentally, the prevalence of home computers began its spread/growth from around 1994-95, but that still isn't a relevant detail.)
As to any increase in Autism occurrence outside of that, I think we can safely say it has nothing to do with the rapid technological advances of the last 15 years or so. I won't profess to be a Darwinism expert, but if History and Science teachers have served me well, it's clear that evolutionary upheaval tends to respond to the much more pressing matters of survival, like extreme climatic change. It's barely within the realm of logic to claim that evolution would react so strongly to such minor stimuli as a computer screen!
Besides, it's nothing new - Aspergers symptoms were first recorded by Hans Asperger during World War II. We just didn't know about it until recently because his notes/records were hidden from the Nazis (he was worried that the children he'd been observing would be taken away and killed or subjected to scientific experimentation). Eventually his daughter had his findings published and now we know about Aspergers. Voila! Let the diagnoses begin!
Technology opens doors for people with Autism...
If technology has played a role in the world of Autism at all, it has been to open doors. Many people with ASDs feel at ease in the world of technology because machines are structured, predictable and non-judgemental. Now people with ASDs have many more exciting (and less stressful) career paths available to them, and greater opportunities for a happy, fullfilling adult life, with less pressure to perform well inter-personally in the workplace.
These statements below both might seem a lot like reasonable, rational, logical statements, but the reality is that they are in fact simplistic, unreasonable, illogical, inequitable, lacking in acceptance and quite frankly, very ill-informed.
The world isn't filled with people with Autism, so...
The first statement made was that a child with Autism lives in a world that isn't filled with other people with Autism, so the child with Autism needs to modify/adapt in order to fit in.
Sadly, this is VERY common thinking. Teachers everywhere expect the child with Autism/Aspergers in the mainstream classroom to adapt and modify constantly in order to fit in. Teachers have lots of good reasons for this thinking, not least of which is that their classroom will be easier to manage if they "can just fix that Aspie". And sure, the world isn't filled with people with Autism, so there are times when the person with an ASD needs to fumble their way through neurotypical settings and adapt as best they can.
But what this hegemonic thinking chooses to forget is that Aspergers, in many ways, could be looked upon as a dysfunction of the ability to adapt. Adapting to change, to lack of predictability, to the world around them is extraordinarily difficult for people with Autism. And they are surrounded by neurotypicals who can change pace or switch channels faster and more naturally than they can change their underwear. But still the weight is on the shoulders of the individual with Autism to do all the adapting and changing to the neurotypical world.
Would you say the same thing to the student with Cerebral Palsy or spinal injury? (ie: You can't walk properly, but the world is filled with people who can, so you'd better start learning how to do it better. And because you don't walk like the rest of us, we feel awkward and uncomfortable when we watch you, so can you make more effort to fix that please?)
That's the kind of thinking which used to keep wheelchair bound people out of education facilities, restaurants and malls because of steps and inaccessible doorways. It's also the kind of thinking which meant little kids with CP used to be placed into nursing homes with dying old people.
Would you say the same thing to a deaf/blind student? (ie: You can't see/hear properly, but everyone around you can, so you'd better adapt lickity-split!....")
If we thought this way, we wouldn't have those noisy, vibrating pedestrian crossing buttons which keep people alive on busy roads.
What about a student with dyslexia? (ie: "We know those words are moving around on the page for you, but hey, it's not a problem for everyone else, so you'd better adapt to how we do things, because it's too inconvenient for us that you're different!")
We all know this is unreasonable thinking and that we need to make adaptations to enable all students to have an enjoyable and successful education. The message here is simple - students with Autism are entitled to the same level of regard.
The position that people on the Autism Spectrum must adapt to the world around them simply because everyone else in it doesn't have the same needs as him represents exclusivity and absolutely lacks in empathy and compassion for the difficulties faced.
It's tragically ironic to me that we talk about Theory of Mind (the ability to put yourself into someone else's shoes and imagine their experiences) and Aspies' challenges around this, but much of the time we refuse to see things from their perspective, and instead try to find a way to mould them to fit into our neurotypical way of seeing and doing things.
Maybe we could consider instead, showing a little empathy and creating a space which makes them comfortable enough to excel and experience true happiness.
A moment in an Aspie's shoes:
The student with Autism/Aspergers is probably very anxious.
The student with Autism/Aspergers is probably in sensory overload most of the time they are at school.
The student with Aspergers finds it difficult to adapt.
The student with Aspergers isn't necessarily aware that they are annoying someone or disrupting the class. They won't necessarily see people's reactions.
The student with Aspergers has no idea what everyone wants from them most of the time, or why they are in trouble. (How are they supposed to know what adaptations to make?)
Allow the person with an ASD to be themselves in your classroom.
Think about it this way. The student with Aspergers struggles to understand the social communication around them. If you ask them what they think of it, they'll tell you how they don't get the point of all that stuff. It is also virtually impossible to motivate someone on the Spectrum to do something which doesn't suit their outlook on the world. If they can't logically see a reason to do something, then they simply won't, because to them it defies common sense to go down that path. (I suspect there are plenty of neurotypical people who would feel the same way if they were being told to do something which made no sense as well).
...it's a very illogical way to approach educating them...
This by definition means that they are highly unlikely to do the adapting that you are asking of them. So it's a very illogical way to approach educating them. Do you think that it's fair to set them and yourself up for such an epic failure like this? In the long term, quite seriously, it's far simpler to just educate the other students about Autism, and make changes which allow the person with an ASD to be themselves in your classroom.
An afterthought: If you think you've managed to fix your mainstreamed student with Aspergers, because they're no longer disrupting the class, have a think about whether your behaviour management strategies might be suppressing rather than allowing them to be who they are. How happy are they really? Are they just trying to please you by being well-behaved, but not getting any school work done or making any friends? Are there any other similar incongruous pieces of data in the student's experience at school?
Just because they're behaving, doesn't mean they're learning, achieving their potential or, most importantly, happy. It usually just means they want to please you, and sadly, they'll even harm themselves to achieve that.
The second comment was an idea he had that Autism is rapidly increasing in numbers because of all the technology we have around us. The comment was that we are creating a generation of people with Autism because they spend so much time in front of computers and playing video games, so they don't develop social skills - and consequently develop Autism.
Autism isn't something you can catch... It's not something you develop because of your environment.
First, Autism isn't something you can catch, nor is it something you can get from sitting in front of a computer or playing too many video games. It's not something you develop because of your environment.
Any inference that environment causes Aspergers/Autism is just another form of parent-blame, and is archaic, unhelpful thinking, like the label of "Refrigerator Mother" from the 1950s.
The increased diagnosis of Autism/High-Functioning Autism/Aspergers is due largely to increased awareness. It wasn't until 1994 that Aspergers Syndrome was added to the DSM IV (the official, internationally accepted diagnostic criteria for mental illness and developmental disorders). We also know now that statistically about 1 in 100 people has Autism. So it stands to reason that once a label was available for Aspergers, there would be a helluva lot more diagnosing happening from that point forward. (Coincidentally, the prevalence of home computers began its spread/growth from around 1994-95, but that still isn't a relevant detail.)
As to any increase in Autism occurrence outside of that, I think we can safely say it has nothing to do with the rapid technological advances of the last 15 years or so. I won't profess to be a Darwinism expert, but if History and Science teachers have served me well, it's clear that evolutionary upheaval tends to respond to the much more pressing matters of survival, like extreme climatic change. It's barely within the realm of logic to claim that evolution would react so strongly to such minor stimuli as a computer screen!
Besides, it's nothing new - Aspergers symptoms were first recorded by Hans Asperger during World War II. We just didn't know about it until recently because his notes/records were hidden from the Nazis (he was worried that the children he'd been observing would be taken away and killed or subjected to scientific experimentation). Eventually his daughter had his findings published and now we know about Aspergers. Voila! Let the diagnoses begin!
Technology opens doors for people with Autism...
If technology has played a role in the world of Autism at all, it has been to open doors. Many people with ASDs feel at ease in the world of technology because machines are structured, predictable and non-judgemental. Now people with ASDs have many more exciting (and less stressful) career paths available to them, and greater opportunities for a happy, fullfilling adult life, with less pressure to perform well inter-personally in the workplace.
Get vs Get Away
Children mostly act out behaviours with one of two motivations – to get something (gain), or to get away from something (avoid). This isn't really unique to children! It does however serve us to think this way regarding difficult behaviours in children, because more inroads can be made if the questions are asked:
What does she want to gain from doing that? Or is there something she's trying to avoid?
Examples:
- A child whines incessantly because they have learned that often adults get so sick of listening to whining, they eventually give the child what they've been asking for (gain), simply to get some peace (adult gains something too and avoids stress).
- A child with auditory sensitivities will often be noisy in order to drown out (avoid) noises that are bothering them.
- Another child with proprioceptive challenges might constantly touch everything and everyone all day long, despite being told repeatedly to keep hands to themselves. They might also be constantly on the move. (These behaviours are usually to gain sensory input and feel at ease or safe in the world).
- One child might be shy and standoffish because they want to avoid making social faux pas which could leave them vulnerable amongst their peers.
- Another child might take a long time to go out onto the playground at recess because they are avoiding a bully, or not enjoying the prospect of hot weather.
If we can look at all behaviours with this “get versus get away” question in mind, it often makes it easier to firstly get to the root of the problem, and then find an appropriate solution. It also often makes what at first seemed like a really difficult and bothersome behaviour, become a much more understandable and less troublesome issue.
So, lets look at a particular behaviour. A child gets up and wanders around the room several times during a teaching session. This behaviour could be explained in a myriad of general ways – he could be wanting to look at others' work, he could be restless, he might have attention issues, he might be looking for an escape route, he might not want to do the work, and so on.
But for each of these possibilities, what would he be hoping to gain or get away from? Knowing that he has attention issues, while it helps us be more understanding by introducing compassion, doesn't really get to the root of the current problem. It simply describes an over-arching problem which might be behind the current need. If he's restless, what has made him restless? Is he avoiding discomfort? Is his seat uncomfortable? Is he cold? Is he avoiding anxiety? Is the work too difficult or overwhelming? Is he avoiding getting started (and if so, that's a large behaviour-set on its own, which needs the same questions asked of it). Is he trying to have a break from sensory inputs? Are the lights bothering him? Is he upset? Has someone who sits near him been bullying?
The possibilities are endless, but if you can narrow down what he might be trying to avoid/get away from, or gain/get by moving around the room, then you're halfway there.
Assumptions / Respect is a two way street
The other day my son and I were coming out of a bakery, happily carrying munchables. He lagged in the doorway, distracted, and a lady behind him politely said, “Excuse us!” so that she could get through the doorway. We apologised and stepped out of the way. However, as she was alone and she had used the word “us”, my boy's Aspie brain heard what she said as a literal phrase, and he consequently wondered out aloud who the other part of the “us” was, even going so far as to check inside the bakery for a second person. The woman turned on him, scowled angrily, and told him not to be so rude.
She had assumed that his smile meant he was trying to intentionally push her buttons, when in fact he was attempting to engage with her in a friendly way, with an innocent and literal question. Even his tone and body language told her so, but she made negative assumptions about his motivations all the same.
I told her that he has Autism and that he doesn't know if he sounds rude, and she huffed curtly in reply and left. The inference in my statement was, “Don't assume you know what's in front of you, because you could be wrong.” I'm not sure whether she picked up on that though.
At the time I recall feeling quite angry, because she had in turn been quite rude in tone to him, and hadn't then taken back her accusation - simply because he is a child and she can get away with it because she's an adult. The double standard really pushed my buttons, as I was sure she had wanted him to apologise, but she wasn't willing to treat him with the same respect.
People make assumptions all the time, in particular about the negative, supposedly manipulative motivations of children. What they forget is that all children and young people, even underneath the bluff and bluster of teenage cynicism, want to please adults and receive positive feedback. The truth is, the same could also be said of most adults – we all enjoy being liked and we all like getting positive feedback from others. If adults mishandle an interaction and come across as rude, they rarely have intentionally planned it that way before they enter the conversation – in most cases they are reacting to circumstances. So why do we jump to thinking that children, who have far less skill and social finesse than adults, have evil manipulative intentions whenever they make a social mistake?
It's all a nonsensical cultural stuff-up from pre-1970s, when the child was seen as the enemy, as a manipulative beast to be watched at all times. But that was over 40 years ago, when it was also considered immoral to keep children born out of wedlock! Let's get real, we adults need to get with the times and look at children differently. It's easy to set a better example to the kids in our world, and it all comes down to this: if we want them to respond nicely to us, then we need to set out assuming their intentions are good, and maybe they just made a mistake when they sounded the way they did. They are, after all, still learning.
Or maybe, just maybe, it's possible that we've misunderstood and we need to apologise. After all, we're not infallible, and a bit of humility never hurt anyone.
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