"Autism is a complex neurobehavioral disorder that includes impairments in social interaction and developmental language and communication skills and rigid, repetitive behaviors. The disorder covers a large spectrum of symptoms, skills, and levels of impairment. It ranges in severity from a handicap that limits an otherwise normal life to a devastating disability that may require institutional care.
Children with autism
have trouble communicating. They have trouble understanding what other people think and feel. This makes it very hard for them to express themselves either with words or through gestures, facial expressions, and touch.
A child with autism who is very sensitive may be greatly troubled -- sometimes even pained -- by sounds, touches, smells, or sights that seem normal to others.
Children who are autistic may have repeated body movements such as rocking or hand flapping. They may have unusual responses to people, attachments to objects, resistance to change in their routines, or aggressive or self-injurious behavior. At times they may seem not to notice people, objects, or activities in their surroundings." (Definition borrowed from WebMD http://www.webmd.com/brain/autism/understanding-autism-basics)
Because Autism is many times referred to as a social impairment and described as an inability to connect with and understand others and their emotions, people often make the mistake of assuming that Autistics don't have feelings. The idea that just because an individual does not have the natural ability to understand another person's feelings does not mean that they are incapable of having their own feelings!
The doctor who diagnosed Ella with Autism told me that she had him perplexed because of her warm behavior. She was much more interested in interacting with him than a 'typical' Autistic; but he also knew that her tics, repetitive behavior, constant stimming, incorrect sensory processing and social anxiety were all consistent with Autism and felt confident that it was to be her diagnosis. Recently, we had an Occupational Therapist question Ella's diagnosis because of her ability to make eye-contact, gesture with her hands and pretend play with her toys. Initially when looking for the correct diagnosis, I had dismissed the possibility of Autism as a possibility for Ella because of her eagerness to giggle and communicate regardless of her developmental delays, so the uncertainty of these professionals had my mind spinning and wondering, "what in the world could this be if it's not Autism??"
Or was there another possibility?
Can Autistics have a personality?
Can Autistics develop beyond their current limitations?
Dare I ask... Can they feel emotion?!?
I remember as a baby, Ella rarely made eye-contact. There are several things now, looking back that we can say, "Ah ha! Now we know why she ______!" One such thing was biting the paint off of our cement walls when we lived in Peru! Other "light-bulbs" include (but not limited to): smearing her poo on walls, sheets and blankets - even eating it, shaking her head, falling lots in an attempt to walk at age 2, twirling toys in her hands rather than actually playing with them, obsession with certain toys,- seeming to have a relationship with them over people (at two yrs, it was a plastic cup and spoon) and repeating phrases over and over and OVER again.
Over the course of the years, we constantly worked with Ella to look at us in our eyes . She eventually learned that if she didn't look at us and either gesture with baby signs or use her words, she wouldn't get whatever it was that she wanted, no matter how loud or obnoxious her screams were. Being that we assumed Ella was only developmentally delayed, and that we fully expected her to catch up to other kids her age, we pushed (perhaps too hard) Ella to respond and act in a way that was socially and behaviorally acceptable.
As a young child, Ella was unusually amused by the different emotional faces. She loved (almost like it was a game) to guess and identify what 'kind' of a face I was making: happy, sad, mad, surprised, worried, etc... And when we'd make a new face that she didn't understand, such as biting our lip or pursing our lips together, she'd try to imitate the expression and ask, "What dis mean?" (The inability to read emotional expression is typical among Autistics, which is one of the later indicators that we came to use to identify Autism as what Ella had.)
When Ella reached age 4, her developmental gap became even larger in comparison to other kids her age when it was supposed to be narrowing, and we became aware that there was something else going on beyond her developmental and medical delays. The other kids kept developing and Ella's repetitive, baby-like behaviors were no longer developmentally typical (mouthing objects, banging on things, grabbing toys, biting, hitting, etc) Other quirks presented themselves at this time as well (such as melt-downs, inability to express her emotions, etc...).
However, even amidst the unusual symptoms that seemed to be arising, there were inconsistencies that threw a wrench in the whole idea of Autism. It was apparent that Ella enjoyed making the other kids in her preschool class laugh. She'd giggle over her words as she'd say something she thought was funny and as she'd reach the peak of her joke she'd erupt with contagious bellowing belly-laughs until the other kids couldn't help but join in. Over time, we realized that Ella used key-words that she knew were funny in order to get the laugh, but she didn't really understand why these words were funny. It was more of a 'cause and effect' experiment than genuine social engagement. She was interacting, but not really connecting.
So, why, if Ella has Autism, and peers and social situations give her anxiety, does she still seek out interaction or nearness with/to others? Why would she rather fiddle on the floor of my room while I'm getting ready in the morning than in another room where she'd be alone with no competing or offensive stimulus? Why would she rather risk playing in the busy room with all of the kids where inevitably a toy will be snatched, than play in the safety of seclusion? Why does she try to share (by extending a toy in her hand and offering it to another child) and then when they reach for it, suddenly as if an internal survival instinct is erupting, pull the toy back to herself and start screaming?
Could it be... is it possible... that this child was created as a social, bubbly person and that the Autism is only the processing factory in which she reacts? Could it be, that it makes her feel emotionally happy to see others laugh? Do Autistics feel real emotion?
When I recently expressed my questions of Ella's social interest in other people and desire to make people laugh to an Aspie friend of mine, he said with an almost irritated tone that expressed his thought as if it should be blatantly obvious, "Just because we're Autistic doesn't mean we don't have personalities!" He went on to say that in fact Autistics tend to feel things even more deeply than 'neuro typical' people do, they just don't always know how to express it. Autism effects the communication portion of the brain which creates a sort of block when it comes to the expression of that emotion, which is why, in many instances we get screams, kicking and biting, hiding and many other unusual responses!
My Aspie friend has been asked my several people how he got to the point of communicating so well and having such meaningful relationships with others, and his response was very eye-opening for me. I'm going to attempt to reiterate what he said without botching it too badly.
He said that people on the Autism spectrum have personalities, feelings, hopes and dreams - and many times they are dreams that involve others! He even suggests that they may have a more intense desire to interact socially than many 'neuro typicals', but because of the social-rejection that they experience due to reactions they receive because of their processing problems, being socially involved is just too painful.
My Aspie friend helped to break-down how their perception of the world effects their behavior. (And please know, he is much more eloquent than I am - I'm praying I can communicate this in a clear and understandable manner) My friend suggests that there are three things that effect behavior of any person.
1. Perception
2. Process Information
3. Behavior
Perception + How we process = Our Behavior
How we Perceive a situation will effect how we process the information and will result in our behavior:
Example: If we perceive a situation to be dangerous (ie. a poisonous snake has us cornered) and we've never learned any formal way to process that information (such as snake handling or whether to move very quickly or very slowly) we may act or do (behave) any number of odd things to save ourselves from the situation.
So, my friend explained it like this, if a sound such as a buzzing light is extremely offensive to an Autistic (which is very common) and this is their perception of the situation, they are processing the information based on how they feel it coming in and might behave by screaming and covering their ears.
Now, that same person, after being taught or given 'tools' to cope could hear the same buzzing sound, perceive it in the exact same way with a severe offense to the sound, but since he has learned a new way to process (can now remove himself from the room or has learned to identify what the sound is and make it stop) will have a much different behavior. The sound didn't change for him, but he has learned how to process the information differently.
So, what my friend helped me to realize about my Ella is that, all of her many improvements (ability to verbalize, point, gesture, pretend, speak, etc...) are not a sign that Ella does not have Autism, because she very clearly does! But that, because of her social desire (due to her personality) and hard work to learn how to process, Ella is still perceiving situations in a very dramatic way, but her behavior is significantly different than it used to be because she has been given tools to process! There are still many hours in a day that the negative perception wins and we have huge behaviors spurting in every direction, but then we have those rare victories that were only achieved through intentional, hard work from Ella! Those moments are what I live for!
As Ella enters into a perceptually challenging situation such as washing her hair, she has to process this terrifying task of dunking her head under water and experiencing the extreme sensations that it gives to her. I've watched as she just about slips into hysterics when all of a sudden I see something click and she makes a conscious effort to take slow, deep breaths to calm her over-stimulated sensory system and accomplish the task of washing her hair !!! It is an absolutely extraordinary thing to behold! It's not as if the tools take away the sensations or her very real perception of what's happening, she's just heroically using those tools to help her get through and achieve what was previously impossible! What a victory! Making it through the task once means she can do it again. And again. And again. Not always without a melt-down, but the more frequent it becomes, the more easily overcome!
My Aspie-friend then gave me a simple formula for social-success, and in his mind, there is no way to achieve it without taking these steps.
1. The person with Autism needs to learn how to understand themselves.
*This may look like a parent constantly making the child with Autism aware of his behaviors and asking questions as to why he is doing this or journaling as to when or what circumstances are present when the behavior arises.
*Or it may be an adult with Autism researching for him/herself different symptoms or journaling certain feelings, emotions or reactions to certain situations to find out what he or she likes, hates, loves and can't stand.
2. The person with Autism has to learn how to express his/her needs to those around themselves
*Ex: - When you wear perfume, it makes my nose hurt. Please don't wear it anymore.
- I can't read facial expressions, so please, if I do or say something that hurts your feelings or makes you uncomfortable, please just tell me.
3. Once the person with Autism has discovered what makes him/her tick, has expressed their needs to those around them, they can begin to consider the needs of others
*If a person with Autism hasn't discovered why a certain offensive sound exists or how to get away from it or even how to cope with it, they will be unable to even notice that you are crying because you had a bad day at work.
So, what I'm hoping for people to receive from this post is that if you're coming to this as a parent, spouse or friend of an Autistic, maybe I've helped in some way to connect the dots to understanding your precious one, and/or to help them to learn more about themselves in order to have more meaningful relationships!
Or if you're coming with fresh eyes as a 'neuro typical' and have no idea how to interact with a person with Autism, please realize that they have personalities, feelings, emotions and that they've worked so hard to get to their level of functionability, whatever that may look like. These incredible individuals are dealing with an amazing level of terrifying sensory offenses and expected to act "normal" in any given situation.
This is how I imagine an Autistic world to be:
Just imagine being thrown into a foreign country, all alone, where nothing is familiar. There is nothing you can count on - nothing you can anticipate. People you don't know bring you strange food at different times each day. You're so disoriented, you feel like you're going to fall off of your chair. You try to hang on with your feet, but then your head starts to fall over. You swing your feet and it helps. Someone reaches over and stops your feet and now you feel like you're going to fall again. Some dishes feel like pebbles in your mouth and you receive the gag reflex when you attempt to swallow. Others are as rough as sandpaper on your tongue. When you cringe or react, you get dirty looks and even receive discipline for your poor behavior. The sheets on your bed are scratchy, so much so that you can't sleep. They rub against your skin and it feels as if little splinters are rubbing into your skin as you move about. Strange, unfamiliar noises engulf your room and echo wildly around you. Are they coming from outside? Was that under your bed? It sounds so loud, like it is right next to you - even in your ear! What was that bump? You are on your guard. The next day, with little to no sleep from the trying night before, you attempt to maneuver unfamiliar territory, you're wondering in the city. Out of nowhere comes a venomous cobra. It corners you and lifts its head, proudly spreads its round 'mane' and begins hissing wildly at you! You begin sobbing and jumping around wildly with hands flailing in the air. The people around you laugh and point. They don't care that you're afraid. They don't try and squash the snake. And you even get scolded for reacting so inappropriately. Some even tackle you to the ground causing intense pain as if your bones feel like they're breaking within you....
Need I go on??
No wonder a simple, reliable schedule can make such a difference. No wonder familiar food is so comforting. No wonder toys that are theirs are revered as family. And no wonder a simple name sign on a bedroom door or the same seat at the dinner table can bring so much peace.
I wouldn't trade my little blessing, Ella, for anything in the world!! The more tools and information I can get to help in understanding her are golden nuggets that I protect and cherish with all of my heart! God made this precious one and others like her with individual personalities and a very purposeful design! I can't wait to see how He's going to use these incredible people to touch the world!
Psalm 139:13
"For you created my inmost being; you knit me together in my mother’s womb."
Zephaniah 3:17
"He will rejoice over you with singing.”
Psalm 127:3-5
"Children are a heritage from the Lord,
offspring a reward from him.
Like arrows in the hands of a warrior
are children born in one’s youth.
Blessed is the man
whose quiver is full of them."
Ephesians 3:20-21
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."
Children with autism
have trouble communicating. They have trouble understanding what other people think and feel. This makes it very hard for them to express themselves either with words or through gestures, facial expressions, and touch.
A child with autism who is very sensitive may be greatly troubled -- sometimes even pained -- by sounds, touches, smells, or sights that seem normal to others.
Children who are autistic may have repeated body movements such as rocking or hand flapping. They may have unusual responses to people, attachments to objects, resistance to change in their routines, or aggressive or self-injurious behavior. At times they may seem not to notice people, objects, or activities in their surroundings." (Definition borrowed from WebMD http://www.webmd.com/brain/autism/understanding-autism-basics)
Because Autism is many times referred to as a social impairment and described as an inability to connect with and understand others and their emotions, people often make the mistake of assuming that Autistics don't have feelings. The idea that just because an individual does not have the natural ability to understand another person's feelings does not mean that they are incapable of having their own feelings!
Or was there another possibility?
Can Autistics have a personality?
Can Autistics develop beyond their current limitations?
Dare I ask... Can they feel emotion?!?
I remember as a baby, Ella rarely made eye-contact. There are several things now, looking back that we can say, "Ah ha! Now we know why she ______!" One such thing was biting the paint off of our cement walls when we lived in Peru! Other "light-bulbs" include (but not limited to): smearing her poo on walls, sheets and blankets - even eating it, shaking her head, falling lots in an attempt to walk at age 2, twirling toys in her hands rather than actually playing with them, obsession with certain toys,- seeming to have a relationship with them over people (at two yrs, it was a plastic cup and spoon) and repeating phrases over and over and OVER again.
Over the course of the years, we constantly worked with Ella to look at us in our eyes . She eventually learned that if she didn't look at us and either gesture with baby signs or use her words, she wouldn't get whatever it was that she wanted, no matter how loud or obnoxious her screams were. Being that we assumed Ella was only developmentally delayed, and that we fully expected her to catch up to other kids her age, we pushed (perhaps too hard) Ella to respond and act in a way that was socially and behaviorally acceptable.
When Ella reached age 4, her developmental gap became even larger in comparison to other kids her age when it was supposed to be narrowing, and we became aware that there was something else going on beyond her developmental and medical delays. The other kids kept developing and Ella's repetitive, baby-like behaviors were no longer developmentally typical (mouthing objects, banging on things, grabbing toys, biting, hitting, etc) Other quirks presented themselves at this time as well (such as melt-downs, inability to express her emotions, etc...).
However, even amidst the unusual symptoms that seemed to be arising, there were inconsistencies that threw a wrench in the whole idea of Autism. It was apparent that Ella enjoyed making the other kids in her preschool class laugh. She'd giggle over her words as she'd say something she thought was funny and as she'd reach the peak of her joke she'd erupt with contagious bellowing belly-laughs until the other kids couldn't help but join in. Over time, we realized that Ella used key-words that she knew were funny in order to get the laugh, but she didn't really understand why these words were funny. It was more of a 'cause and effect' experiment than genuine social engagement. She was interacting, but not really connecting.
So, why, if Ella has Autism, and peers and social situations give her anxiety, does she still seek out interaction or nearness with/to others? Why would she rather fiddle on the floor of my room while I'm getting ready in the morning than in another room where she'd be alone with no competing or offensive stimulus? Why would she rather risk playing in the busy room with all of the kids where inevitably a toy will be snatched, than play in the safety of seclusion? Why does she try to share (by extending a toy in her hand and offering it to another child) and then when they reach for it, suddenly as if an internal survival instinct is erupting, pull the toy back to herself and start screaming?
Could it be... is it possible... that this child was created as a social, bubbly person and that the Autism is only the processing factory in which she reacts? Could it be, that it makes her feel emotionally happy to see others laugh? Do Autistics feel real emotion?
When I recently expressed my questions of Ella's social interest in other people and desire to make people laugh to an Aspie friend of mine, he said with an almost irritated tone that expressed his thought as if it should be blatantly obvious, "Just because we're Autistic doesn't mean we don't have personalities!" He went on to say that in fact Autistics tend to feel things even more deeply than 'neuro typical' people do, they just don't always know how to express it. Autism effects the communication portion of the brain which creates a sort of block when it comes to the expression of that emotion, which is why, in many instances we get screams, kicking and biting, hiding and many other unusual responses!
He said that people on the Autism spectrum have personalities, feelings, hopes and dreams - and many times they are dreams that involve others! He even suggests that they may have a more intense desire to interact socially than many 'neuro typicals', but because of the social-rejection that they experience due to reactions they receive because of their processing problems, being socially involved is just too painful.
My Aspie friend helped to break-down how their perception of the world effects their behavior. (And please know, he is much more eloquent than I am - I'm praying I can communicate this in a clear and understandable manner) My friend suggests that there are three things that effect behavior of any person.
1. Perception
2. Process Information
3. Behavior
Perception + How we process = Our Behavior
How we Perceive a situation will effect how we process the information and will result in our behavior:
Example: If we perceive a situation to be dangerous (ie. a poisonous snake has us cornered) and we've never learned any formal way to process that information (such as snake handling or whether to move very quickly or very slowly) we may act or do (behave) any number of odd things to save ourselves from the situation.
So, my friend explained it like this, if a sound such as a buzzing light is extremely offensive to an Autistic (which is very common) and this is their perception of the situation, they are processing the information based on how they feel it coming in and might behave by screaming and covering their ears.
Now, that same person, after being taught or given 'tools' to cope could hear the same buzzing sound, perceive it in the exact same way with a severe offense to the sound, but since he has learned a new way to process (can now remove himself from the room or has learned to identify what the sound is and make it stop) will have a much different behavior. The sound didn't change for him, but he has learned how to process the information differently.
So, what my friend helped me to realize about my Ella is that, all of her many improvements (ability to verbalize, point, gesture, pretend, speak, etc...) are not a sign that Ella does not have Autism, because she very clearly does! But that, because of her social desire (due to her personality) and hard work to learn how to process, Ella is still perceiving situations in a very dramatic way, but her behavior is significantly different than it used to be because she has been given tools to process! There are still many hours in a day that the negative perception wins and we have huge behaviors spurting in every direction, but then we have those rare victories that were only achieved through intentional, hard work from Ella! Those moments are what I live for!
As Ella enters into a perceptually challenging situation such as washing her hair, she has to process this terrifying task of dunking her head under water and experiencing the extreme sensations that it gives to her. I've watched as she just about slips into hysterics when all of a sudden I see something click and she makes a conscious effort to take slow, deep breaths to calm her over-stimulated sensory system and accomplish the task of washing her hair !!! It is an absolutely extraordinary thing to behold! It's not as if the tools take away the sensations or her very real perception of what's happening, she's just heroically using those tools to help her get through and achieve what was previously impossible! What a victory! Making it through the task once means she can do it again. And again. And again. Not always without a melt-down, but the more frequent it becomes, the more easily overcome!
 |
| Potty-training is tough! At age 5, it's still not clicking, but look at that great attitude and keep-at-it smile! |
1. The person with Autism needs to learn how to understand themselves.
*This may look like a parent constantly making the child with Autism aware of his behaviors and asking questions as to why he is doing this or journaling as to when or what circumstances are present when the behavior arises.
*Or it may be an adult with Autism researching for him/herself different symptoms or journaling certain feelings, emotions or reactions to certain situations to find out what he or she likes, hates, loves and can't stand.
2. The person with Autism has to learn how to express his/her needs to those around themselves
*Ex: - When you wear perfume, it makes my nose hurt. Please don't wear it anymore.
- I can't read facial expressions, so please, if I do or say something that hurts your feelings or makes you uncomfortable, please just tell me.
3. Once the person with Autism has discovered what makes him/her tick, has expressed their needs to those around them, they can begin to consider the needs of others
*If a person with Autism hasn't discovered why a certain offensive sound exists or how to get away from it or even how to cope with it, they will be unable to even notice that you are crying because you had a bad day at work.
So, what I'm hoping for people to receive from this post is that if you're coming to this as a parent, spouse or friend of an Autistic, maybe I've helped in some way to connect the dots to understanding your precious one, and/or to help them to learn more about themselves in order to have more meaningful relationships!
Or if you're coming with fresh eyes as a 'neuro typical' and have no idea how to interact with a person with Autism, please realize that they have personalities, feelings, emotions and that they've worked so hard to get to their level of functionability, whatever that may look like. These incredible individuals are dealing with an amazing level of terrifying sensory offenses and expected to act "normal" in any given situation.
This is how I imagine an Autistic world to be:
Just imagine being thrown into a foreign country, all alone, where nothing is familiar. There is nothing you can count on - nothing you can anticipate. People you don't know bring you strange food at different times each day. You're so disoriented, you feel like you're going to fall off of your chair. You try to hang on with your feet, but then your head starts to fall over. You swing your feet and it helps. Someone reaches over and stops your feet and now you feel like you're going to fall again. Some dishes feel like pebbles in your mouth and you receive the gag reflex when you attempt to swallow. Others are as rough as sandpaper on your tongue. When you cringe or react, you get dirty looks and even receive discipline for your poor behavior. The sheets on your bed are scratchy, so much so that you can't sleep. They rub against your skin and it feels as if little splinters are rubbing into your skin as you move about. Strange, unfamiliar noises engulf your room and echo wildly around you. Are they coming from outside? Was that under your bed? It sounds so loud, like it is right next to you - even in your ear! What was that bump? You are on your guard. The next day, with little to no sleep from the trying night before, you attempt to maneuver unfamiliar territory, you're wondering in the city. Out of nowhere comes a venomous cobra. It corners you and lifts its head, proudly spreads its round 'mane' and begins hissing wildly at you! You begin sobbing and jumping around wildly with hands flailing in the air. The people around you laugh and point. They don't care that you're afraid. They don't try and squash the snake. And you even get scolded for reacting so inappropriately. Some even tackle you to the ground causing intense pain as if your bones feel like they're breaking within you....
Need I go on??
No wonder a simple, reliable schedule can make such a difference. No wonder familiar food is so comforting. No wonder toys that are theirs are revered as family. And no wonder a simple name sign on a bedroom door or the same seat at the dinner table can bring so much peace.
I wouldn't trade my little blessing, Ella, for anything in the world!! The more tools and information I can get to help in understanding her are golden nuggets that I protect and cherish with all of my heart! God made this precious one and others like her with individual personalities and a very purposeful design! I can't wait to see how He's going to use these incredible people to touch the world!
"For you created my inmost being; you knit me together in my mother’s womb."
Zephaniah 3:17
"He will rejoice over you with singing.”
Psalm 127:3-5
"Children are a heritage from the Lord,
offspring a reward from him.
Like arrows in the hands of a warrior
are children born in one’s youth.
Blessed is the man
whose quiver is full of them."
Ephesians 3:20-21
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."
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