1)First of all I am a child.
I have Autism. I'm not only "Autistic." My autism is only one aspect of my character. Does not define me as a person. You are a person with thoughts, feelings and talents. Or you're just fat, skinny, tall, short, short-sighted. Perhaps these are some things I notice when you meet, but this is not necessarily what you are. As an adult, you have some control of how they self-define. If you want to delete a feature, can be expressed differently. As a child I'm still discovering. Neither you or I may know what I'm capable of. Defining me by one characteristic only, ends up running the risk of keeping expectations that will be small for me. And if you think I feel that I can not do something, my answer will naturally be: Why try?
I have Autism. I'm not only "Autistic." My autism is only one aspect of my character. Does not define me as a person. You are a person with thoughts, feelings and talents. Or you're just fat, skinny, tall, short, short-sighted. Perhaps these are some things I notice when you meet, but this is not necessarily what you are. As an adult, you have some control of how they self-define. If you want to delete a feature, can be expressed differently. As a child I'm still discovering. Neither you or I may know what I'm capable of. Defining me by one characteristic only, ends up running the risk of keeping expectations that will be small for me. And if you think I feel that I can not do something, my answer will naturally be: Why try?
2)My sensory perceptions are disordered.
Sensory interaction may be the most difficult aspect to understand autism. It means that ordinary senses such as hearing, smell, taste, touch, feelings that go unnoticed in their day to day can be painful for me. The environment in which I live can be hostile to me. I can seem distracted or on another planet, but I'm just trying to defend myself. I will explain why a simple trip to the market can be hell for me: my hearing can be very sensitive. Many people may be talking at the same time, music, announcements, sound of cash registers, phones ringing, children crying, people coughing, fluorescent lights. My brain can not assimilate all this information, causing me a loss of control. My sense of smell can be very sensitive. The fish is sold at the fishmonger's not cool, the person who is close may not have had a bath today, alongside the baby may have a dirty diaper, the floor may have been cleaned with ammonia. I can not separate the smells and start to feel sick. Because my primary sense is visual. Then the vision can be the first sense to be super-excited. The fluorescent light is not only very bright, she flashes and can make a noise. The room seems to pulsate and it hurts my eyes. This pulse of light covers everything and distorts what I am seeing. The space seems to be constantly changing. I see a glow in the window, there are many things that I can not concentrate. The fan, people walking from one side to the other ... All this affects my senses and now I do not know where my body is in space.
Sensory interaction may be the most difficult aspect to understand autism. It means that ordinary senses such as hearing, smell, taste, touch, feelings that go unnoticed in their day to day can be painful for me. The environment in which I live can be hostile to me. I can seem distracted or on another planet, but I'm just trying to defend myself. I will explain why a simple trip to the market can be hell for me: my hearing can be very sensitive. Many people may be talking at the same time, music, announcements, sound of cash registers, phones ringing, children crying, people coughing, fluorescent lights. My brain can not assimilate all this information, causing me a loss of control. My sense of smell can be very sensitive. The fish is sold at the fishmonger's not cool, the person who is close may not have had a bath today, alongside the baby may have a dirty diaper, the floor may have been cleaned with ammonia. I can not separate the smells and start to feel sick. Because my primary sense is visual. Then the vision can be the first sense to be super-excited. The fluorescent light is not only very bright, she flashes and can make a noise. The room seems to pulsate and it hurts my eyes. This pulse of light covers everything and distorts what I am seeing. The space seems to be constantly changing. I see a glow in the window, there are many things that I can not concentrate. The fan, people walking from one side to the other ... All this affects my senses and now I do not know where my body is in space.
3)Please remember to distinguish between non-power (I do not want to do) and I can not (I can not do) Receptive and expressive language and vocabulary can be very difficult for me.
Not that I do not listen to. I just do not understand you. When you call to me from across the room, this is what I hear "BBBFFFZZZZSWERSRTDSRDTYFDYT John." Instead, come speak to me directly with a simple vocabulary: "John, please put your book on the shelf. It's time for lunch." This tells me you want me to do and what happens next. So it is easier to understand.
Not that I do not listen to. I just do not understand you. When you call to me from across the room, this is what I hear "BBBFFFZZZZSWERSRTDSRDTYFDYT John." Instead, come speak to me directly with a simple vocabulary: "John, please put your book on the shelf. It's time for lunch." This tells me you want me to do and what happens next. So it is easier to understand.
4)I am a "concrete thinker". My thought is concrete, I can not make abstractions. I play very little hidden meaning of words. It is very confusing to me when you say "Does not Suck," when what you mean is "do not bother me." Do not say "this is a breeze, it is piece of cake" when there is no a piece of cake around and what you mean is that this is something easy to do. Slang, jokes, double intentions, paraphrases, indirect, I do not understand sarcasm.
5)Please be patient with my limited vocabulary.
Say what I need is very difficult for me when I do not know the words to describe what I feel. I may be hungry, frustrated, frightened and confused, but now those words are beyond my ability, than I can express. So pay attention to the language of my body (retraction, agitation or other signs that something is wrong). On other hand, can seem like a little professor or a movie star saying the above words of my ability at my age. Indeed, they are words I memorized from the world around me to compensate for my deficiency in language. Because I know exactly what is expected of me as an answer when someone talks to me. Difficult words that I speak from time to time may come from books, TV, or even being words of others. This is called echolalia. I do not need to understand the context of the words I am using. I just know I should say something.
6)I am very visually oriented because the language is very difficult for me.
Please show me how to do something rather than just telling me. And please, be prepared to show me many times. Consistent repetitions help me learn. A visual schedule helps me during the day to day. Relieve me from the stress of having to remember what will happen. Help me to have an easier transition from one activity to another. Help me to control the weather, my activities and meet their expectations. I will not lose the need for a visual schedule to be growing. But my level of representation may change. Before I can read, I need a visual schedule with photographs or simple drawings. With my growth, a combination of words and pictures may help later to know the words.
7)Please pay attention and tell me what I can do instead of just saying what I can't do. Like any other human can not learn in an environment where I always feel useless, that there is something wrong with me and I need to "REPAIR". To try to do something new when I know I'll be criticized? Constructively or not is something I avoid. Look for my potential and you will find many! I will have more than one way to do things.
8)Please help me with social interactions.
It may appear that do not want to play with other children in the park, but sometimes just do not know how to start a conversation or join in the fun. If you can encourage other children to invite me to play football or play with cars, maybe I'm delighted to be included. I am better in games that have structured activities beginning-middle-end. I do not know how to "READ" facial expression, body language and emotions of others. Thank you if you teach me how should I respond socially. Example: If I laugh when Sandra falls of the slide is not that I find funny. I just do not know how to act socially. Teach me to say: "are you okay?".
9)Try to find what causes the loss of my control.
Loss of control, "tantrum", tantrums, bad creation, scandal, how you want to call, they are more horrid for me than for you. They occur because one or more of my senses was stimulated to the extreme. If you can find out what causes my loss of control, this can be prevented - or even avoided. Keep a log of hours, places, people and activities. You can find a sequence seem daunting at first, but surely will get. Try to remember that all behavior is a form of communication. This will tell you what my words can not say how I feel my environment and what is happening inside.
10)If you are a member of the family love me without condition.
Banish thoughts like, "If only he could ..." or "Why can not he ..." You could not meet all the expectations that their parents had for you and you would not want to always be reminded of it. I did not choose to be autistic. But remember that this is happening to me, not you. Without your help my chances of achieving a dignified adulthood will be small. With your support and guidance, the possibility is greater than you think.
It helps to see my autism as a different ability rather than a disability. Look over what you think is a limitation to this and see that autism has given me. Perhaps it is true that I am not good at eye contact-to-eye and conversations, but you noticed that I am not lying, stealing games, gossip with classmates or other people think? It is true that I will not be a Cristiano Ronaldo "Phenomenon" of football. But with my ability to pay attention and focus on what interests me, I can be the next Einstein, Mozart or Van Gogh (they also had autism), a possible answer to Alzheimer's, the enigma of extraterrestrial life, etc.. - What the future has in store for autistic children like me, is in their future. All I can is not going to happen without you being my base. Think about these social 'rules' and if they do not make sense to me, set aside. Be my protector is my friend and we'll see how far I can go.
Say what I need is very difficult for me when I do not know the words to describe what I feel. I may be hungry, frustrated, frightened and confused, but now those words are beyond my ability, than I can express. So pay attention to the language of my body (retraction, agitation or other signs that something is wrong). On other hand, can seem like a little professor or a movie star saying the above words of my ability at my age. Indeed, they are words I memorized from the world around me to compensate for my deficiency in language. Because I know exactly what is expected of me as an answer when someone talks to me. Difficult words that I speak from time to time may come from books, TV, or even being words of others. This is called echolalia. I do not need to understand the context of the words I am using. I just know I should say something.
6)I am very visually oriented because the language is very difficult for me.
Please show me how to do something rather than just telling me. And please, be prepared to show me many times. Consistent repetitions help me learn. A visual schedule helps me during the day to day. Relieve me from the stress of having to remember what will happen. Help me to have an easier transition from one activity to another. Help me to control the weather, my activities and meet their expectations. I will not lose the need for a visual schedule to be growing. But my level of representation may change. Before I can read, I need a visual schedule with photographs or simple drawings. With my growth, a combination of words and pictures may help later to know the words.
7)Please pay attention and tell me what I can do instead of just saying what I can't do. Like any other human can not learn in an environment where I always feel useless, that there is something wrong with me and I need to "REPAIR". To try to do something new when I know I'll be criticized? Constructively or not is something I avoid. Look for my potential and you will find many! I will have more than one way to do things.
8)Please help me with social interactions.
It may appear that do not want to play with other children in the park, but sometimes just do not know how to start a conversation or join in the fun. If you can encourage other children to invite me to play football or play with cars, maybe I'm delighted to be included. I am better in games that have structured activities beginning-middle-end. I do not know how to "READ" facial expression, body language and emotions of others. Thank you if you teach me how should I respond socially. Example: If I laugh when Sandra falls of the slide is not that I find funny. I just do not know how to act socially. Teach me to say: "are you okay?".
9)Try to find what causes the loss of my control.
Loss of control, "tantrum", tantrums, bad creation, scandal, how you want to call, they are more horrid for me than for you. They occur because one or more of my senses was stimulated to the extreme. If you can find out what causes my loss of control, this can be prevented - or even avoided. Keep a log of hours, places, people and activities. You can find a sequence seem daunting at first, but surely will get. Try to remember that all behavior is a form of communication. This will tell you what my words can not say how I feel my environment and what is happening inside.
10)If you are a member of the family love me without condition.
Banish thoughts like, "If only he could ..." or "Why can not he ..." You could not meet all the expectations that their parents had for you and you would not want to always be reminded of it. I did not choose to be autistic. But remember that this is happening to me, not you. Without your help my chances of achieving a dignified adulthood will be small. With your support and guidance, the possibility is greater than you think.
It helps to see my autism as a different ability rather than a disability. Look over what you think is a limitation to this and see that autism has given me. Perhaps it is true that I am not good at eye contact-to-eye and conversations, but you noticed that I am not lying, stealing games, gossip with classmates or other people think? It is true that I will not be a Cristiano Ronaldo "Phenomenon" of football. But with my ability to pay attention and focus on what interests me, I can be the next Einstein, Mozart or Van Gogh (they also had autism), a possible answer to Alzheimer's, the enigma of extraterrestrial life, etc.. - What the future has in store for autistic children like me, is in their future. All I can is not going to happen without you being my base. Think about these social 'rules' and if they do not make sense to me, set aside. Be my protector is my friend and we'll see how far I can go.
5 comments:
Great suggestions and examples!
Lovely. very helpful for all of us who deal with autism. thank you.
I agree with all of them but the first one. Like most Autistic adults I realize this is a fantasy of parents of Autistic Children and not the reality of our lives. As a mom of Autsitic children I would like to think there is a child apart from the autism but the reality is that there is not. Our Autism truly defines who we are. Our sensory processing disorders, on the other hand, do not define who we are. I refer to my children as autistic people but when I discuss their inability to wear certain clothes I say that they have a sensory issue or they have sensory processing disorder. It is a perceptual difference that is important to building the self-esteem of the Autistic Person.
Jim Sinclair addressed the differences in his article "Why I Dislike Person Fist Language" You can find it by searching for Jim Sinclair and the phrase person first language. CafeMom has a reprint of his article.
In the words of Jim Sinclair:
Why I dislike "person first" language
Jim Sinclair
I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?
1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.
2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness." We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism." We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job." We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion." Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.
3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality." We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine. Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.
Copyright (c) 1999 Jim Sinclair
I love the article. I do not love all the responses. As a person with disabilities, I want to be seen as a person before I am seen as 'disabilities'. I own my disabilities and have worked my a@@ off to get where I am today. Person-first language is very important. People don't point and say, "Oh, there is that disabled woman". I am not defined solely by my disabilities. I have so many parts of "me" that defines who I am. I am like a 100 piece puzzle that is put together and three of the pieces have the word, "disability" stamped on them. How could three out of 100 pieces say I am a disabled person? What about the other 97 pieces?
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