Once again, I am here to rant about another Autism List that I see bouncing about a lot, and which I find problematic. Here it is:
Dispelling Myths of Autism
Indianapolis Star
Begin to help autistic children by dispelling myths
By Julie Krasnow
The word “autism” has become a more common term recently, due in large part
to the Autism Society of America reporting that autism now affects one in
166 children.
If you don’t know someone with autism, you probably will someday. April is National Autism Awareness Month. As the autism/behavior specialist for the Carmel Clay Schools, my job is to educate others about this disability. Without proper knowledge, many people afflicted with autism often are misunderstood.
I would like to share and resolve some misconceptions and myths to help raise awareness in our community.
Myth No. 1: Autism is caused by “refrigerator mothers.”
Many years ago, Dr. Bruno Bettelheim claimed that autism had a psychological causation: that the mothers of these children, intentionally or otherwise, did not love their children. The term “refrigerator mother” was born, referring to the fact that the mother was cold toward her child. Today we know that autism is a bioneurological disorder that affects the functioning of the brain. Some theories suggest that it may be genetic, viral or caused by chemical exposure.
Commentary:
This idea is still more common than I would like. However, I would also like to file under this kind of ignorance the people who walk up to me in stores and tell me to discipline my child (and Joey isn't too bad in store, he likes them), people who ask us to leave resteraunts, and people who seem to blame us for Joey's quirks by proclaiming us "bad parents" either overtly or covertly.
I also would like to point out that many autistic adults seem to have a similar view of parents, by ignoring the sacrifices made by parents in trying to help them become independent, socially accepted (or acceptable) adults. You may not agree with how your parents raised you- but that just makes you human. To discount the effort to care for an autistic child and to raise an autistic child, we stand accused of being selfish and uncaring. Just wait until you have kids- which you wouldn't, if we didn't put forth extraordinary effort to help you learn to form and maintain relationships.
Myth No. 2: Autistic children show no emotion.
A common misconception is that children with autism are unloving and do not have any emotional feelings. On the surface, this may seem to be the case because they don’t always express their emotions in a way that you and I recognize. But for those of us who know a child with autism, we are aware of the ways that they show love and affection.
Commentary: My doctor was shocked when we first came back with a diagnosis of autism. The reaction? "But he's such a happy, loving child!" Yes, he is. I'd like to keep him happy and loving, thanks. (Our doctor has been extremely supportive, and interested in learning from Joey's case, by the way- and we're all for that!)
Myth No. 3: Children just need a good spanking
We’ve all been out to a grocery store or running errands when we come across a child throwing a temper tantrum, including screaming, throwing and hitting. We may wonder why parents are letting their child do this without any discipline or reprimands. If this is a child with autism, he most likely has lost control because of sensory overload. The sounds and visual stimulation and the overwhelming crowds are just too much for this child to take in, which results in a meltdown. Parents are unrightfully blamed for not disciplining their children.
Commentary: Yes, and we're awful parents, so what's our problem? Returning to those people who come up to me in the store and tell me about my kid: who the hell are you?
At the same time, I would like to take a moment to mention the folks who come up to me in that same store and tell me what beautiful children I have, even though Andy turns his head away and Joey giggles and asks them something strange. Thank you. Its lovely to know we're giving someone else pleasure, and I hope you enjoy my children as they are.
Myth No. 4: You’re born with autism.
On average, autism is diagnosed at 44 months of age.
Commentary: Joey was born with autism. The time of diagnosis is not the moment you start being autistic. However, autism can be triggered. This note seems to say children are not born with autism; they are. However, there are also children who were neuro-typical, and then have autism triggered by an event- and not always a clear, overnight event.
Myth No. 5: Vaccines do not cause autism.
The jury is still out on this one. Although a recent Institute of Medicine report appears to refute an association between vaccines and autism, the major autism organizations all agree that more research needs to be conducted. A recent study suggests that children receiving vaccines containing the preservative thimerosal are many times more likely to develop autism than those who receive thimerosal-free vaccines.
Commetnary: Joey received thimerosal-free vaccines. He's still autistic. However, I cannot discount that vaccines can be triggers. Vaccines place the body under stress, and stress can trigger autism. However, mumps, measles, rubella, whooping cough, hepatitis, chicken pox, pneumonia, flu, diptheria, tetanus, etc. also put the body under stress, and can trigger autism. On top of that, they can kill you. I recommend vaccination, though we put off the MMR a bit to make sure Joey and Andy had strong immune systems to handle it. I think the MMR is usually 18 months, we waited until 24. Andy is fine. Joey was already not fine.
Myth No. 6: Dustin Hoffman’s character in “Rain Man” is typical of a person
with autism.
The character in “Rain Man” was a high-functioning person with autism and also was a savant. In reality, only 2 percent of those diagnosed exhibit such savant capabilities.
Commentary: If "Rain Man" is a high-functioning autistic person, then I can't really blame people who want to "cure" it. I would consider "Rain Man" to be a medium-functioning person, not a high-functioning person. His savant abilities were not typical. Unfortunately, his social skill and functioning level is pretty middle-of-the-road. He was verbal, but unable to live independently or function in society. With the current understanding of autism and therapies for helping these children learn, we are all hoping to have people with autism be able to be less disabled than Rain Man.
Myth No. 7: The increase in the rate of autism is due to better diagnosing.
Ten years ago, the rate of autism was 1 in 10,000 births. Today it is 1 in 166. This is a 5,000 percent increase in 10 years. If this astonishing increase is due to better diagnosing, where are the thousands of autistic adults who should have received a diagnosis 10, 20 or 30 years ago?
Commentary: There is better diagnosing. There is also better treatment. However, I have the same question. I know autistic adults. But I know far more autistic children. Where are the ASD adults? Where is even the rumor of them? In my neighborhood, there are 3 autistic kids that I know of. However, in my wide range of contacts, friends, acquaintences, etc., I have only one person I know has an ASD, and not even a whisper of anyone, a sibling, a cousin, an aunt, uncle, etc., with ASD, Einstein Syndrome, or other problems that could indicate ASD. Why?
So I don;t think it is all better diagnosing. There really is a problem here, and it would be nice to figure out why were are seeing such a dramatic increase in ASD people.
Myth No. 8: Autism is a rare disorder.
With 1 in 166 children being diagnosed with autism, it can no longer be called rare. We have an epidemic on our hands. Every 16 minutes, another child is diagnosed with autism. For all of us who have had the privilege of knowing, loving or working with a child with autism, we are able to see their abilities through the disability and appreciate the child within. I am pleased to report to the community that my Carmel Clay colleagues and I are working very hard to provide the best education we can for students who have been diagnosed with autism.
Commentary: Autism was rare. Now it is not. There is a .5% chance that your next baby will be autistic.
About 2.2% of children 0-2 are disabled.
The chances of infant mortality is 7 in 1000 births, or .07%.
The chances of a preterm baby is 1 in 8, or 12%.
The chances of a multiple birth is about 3.4%.
The chances of Down Syndrome is 1 in 733. That's a .013% chance.
If you would like more information, please e-mail jkrasnow@ccs.k12.in.us or
call (317) 846-3086, ext. 1247.
Saturday, November 25, 2006
"Cure"
There's a funny word that bounces around the autism community: cure.
Its a funny word, because people get very, very upset about it. There is a whole subculture of sites and groups, mostly of parents, who want a cure. They want their children to be cured of their autism.
Then there are the sites from people who are autistic. Guess what? They don't want to be cured.
At first, I thought this was just a semantics game. I am, in part, correct. When I talk about getting Joey services, helping him to communicate, helping him learn to relate to other people, and heloing him exercise dynamic intelligence (the ability to deal with spontaneous and changing situations and environments), I am targeting core deficiencies that make autism disabling. I do not want my son to be disabled. That is my goal. I know we may never reach it, but that is where I am going in managing the condition.
Even "managing the condition" ruffles feathers. However, when words like "cure", "managing", and "mainstreaming" become problematic, you are having more of a problem of semantics than anything else. I am trying to help Joey, so he can fully enjoy living and enjoy his talents. I am doing this for Andy, too. That is what parents do.
Then I come across the two extremes of the spectrum on this issue.
On are the parents who really do want to "cure" their kid. They want to have a pill or a shot or a diet or a therapy that will make their kid normal. This is based on the idea that autism is a disease, the kid is sick, and if we only knew the right thing to do, it would go away. I certainly understand this feeling. Many of the sites from autistic people seem to completely disregard the effort put forth by parents, the pain they endure, the realization that your child may be disabled forever and unable to fully enjoy life. That will put some of these people off-joint, but there it is. A blind person will never be able to see. They may be perfectly happy, and enjoy their world, and have a useful, independent, joyous life. But I know what a treasure sight is, and would still wish my blind kid could see, and do everything I could to try to share that treasure with them. That is the impulse of most parents I know.
However, there are those parents that simply want a normal kid, rather than the kid they have. I wouldn't have believed this, but I have seen it too often now. So few of the special ed parents get involved, or even try to deal. They toss the kid at teh school at first opportunity, and that's it. They don't want to even look at the child. It's heartbreaking to me. When I compare that attitude to my friend Christina, who has three severely disabled boys and just loves them to peices and does everything she can to help them enjoy living, I just wonder what people are thinking. Those boys bring joy to her life, and she enjoys them, and lets them be who they are, and helps them to enjoy the world around them. We can wish they were not disabled, that they could talk, that they could walk, that they could live healthy, independent lives; but we also love them for who they are. They are not these disabilities.
Joey is not his autism. Joey is Joey. Why he does what he does is only important in that it gives me clues on how to help him, how to teach him, how to communicate with him. It actually gives me information about how he is perceiving the world around him, so that I can help him make sense of the world-- exactly as I am helping Andy make sense of his world.
Which brings me to the other end of the spectrum, the autistic folks who get all fired up and angry about people wanting to cure autism. I can see this side of the coin, too. Who wants to be told all their life that they are doing stuff wrong, that they are less than what was expected, that they can't do, can't be, can't please? The problem here is that by their arguments, we should do nothing. They will vehemently deny this, note that people with autism need support throughout life, that services for autistic adults is woefully absent, and that they are not saying that we shouldn't help. However, they then go to contradict this apologetic. It is very hard to say you don't want to be pushed to act like a normal person, and then wonder why no one will give you any services. Services are intended to help you function in a world of people that are not autistic. I am esepcially offended by autistic adults who say things like "independence isn;'t all its cracked up to be, I do best in dependent situations." Hello. I'd like someone to help me with my self-care skills, too. I'd like a maid to clean my house, a cook to make my food, and someone to hold my hand while I go to the grocery store. However, being an adult means being able to do things for yourself, to be responsible. Being independent is part of being grown-up. My job as a parent is to help my child grow up. Independence is the goal. I understand not everyone with autism will get there, but to harangue parents for having that goal is utterly offensive. It's as offensive as parents who want to make their kids "normal." To say you wished you could stay in some "magical" non-verbal world is saying you wish you could remain a child forever.
Hint: No one is "normal." Its OK to be "quirky" and "eccentric". But it is also a good thing to be able to dress, feed, and bathe yourself, be able to hold a job, and to have friends.
I am not asking Joey ot be a neuro-typical person. I understand that there are parents who do that. I am asking that Joey learn to care for himself, learn to relate to other people, and be able to have that opportunity to share his gifts with the world. For this, he needs help, and more help than Andy needs right now. He needs speech therapy, he needs occupational therapy, he needs intensive training to teach him how to learn and how to relate. He needs to have a connection between himself and the world around him. Its OK to be processing the information differently, but he needs to be processing the information.
Which brings my morning rant around to a another problem I see across the spectrum of the autism community: there is more than one kind of autism. This seems to be blatantly ignored. I have listened to parents of children across the spectrum of ASD, and the picture has become painfully clear to me that there really are at least two types of autism. Some children are born with autism already in play. Joey is this type. Knowing what we know now, we can see that Joey was autistic even in the hospital, when he freaked out over a warm blanket, and could grab and flick the doctor's stethoscope. Yes, as a newborn. Then there are the kids where the autism is triggered. They run into a problem, and they go overnight from being a happy, neuro-typical kid to silence and frustration. The trigger can be any number of things. The MMR vaccine triggered one child. A severe bout of flu triggered another child. I knoew kids who were triggered from stress, from illness, from poisoning by metals or other toxins. It happens. In fact, Joey may have had his trigger right from the get-go, when he went into distress during delivery; perhaps all kids are triggered, and its just a question of when and how. Then again, there are the kids with unusual head growth, which may be more of the at-birth type. At any rate, there are kids who start from the get-go being autistic, and there are kids who are fine, and then become autistic. They all need help to be able to function in the world. We can't just leave them in that magical non-verbal world, because then they never learn not to wander into the street, to dress and care for themselves, to grow into the human community. And after all, we are all humans. As the Dalai Lama once noted, without the human community, one human alone cannot survive.
Its a funny word, because people get very, very upset about it. There is a whole subculture of sites and groups, mostly of parents, who want a cure. They want their children to be cured of their autism.
Then there are the sites from people who are autistic. Guess what? They don't want to be cured.
At first, I thought this was just a semantics game. I am, in part, correct. When I talk about getting Joey services, helping him to communicate, helping him learn to relate to other people, and heloing him exercise dynamic intelligence (the ability to deal with spontaneous and changing situations and environments), I am targeting core deficiencies that make autism disabling. I do not want my son to be disabled. That is my goal. I know we may never reach it, but that is where I am going in managing the condition.
Even "managing the condition" ruffles feathers. However, when words like "cure", "managing", and "mainstreaming" become problematic, you are having more of a problem of semantics than anything else. I am trying to help Joey, so he can fully enjoy living and enjoy his talents. I am doing this for Andy, too. That is what parents do.
Then I come across the two extremes of the spectrum on this issue.
On are the parents who really do want to "cure" their kid. They want to have a pill or a shot or a diet or a therapy that will make their kid normal. This is based on the idea that autism is a disease, the kid is sick, and if we only knew the right thing to do, it would go away. I certainly understand this feeling. Many of the sites from autistic people seem to completely disregard the effort put forth by parents, the pain they endure, the realization that your child may be disabled forever and unable to fully enjoy life. That will put some of these people off-joint, but there it is. A blind person will never be able to see. They may be perfectly happy, and enjoy their world, and have a useful, independent, joyous life. But I know what a treasure sight is, and would still wish my blind kid could see, and do everything I could to try to share that treasure with them. That is the impulse of most parents I know.
However, there are those parents that simply want a normal kid, rather than the kid they have. I wouldn't have believed this, but I have seen it too often now. So few of the special ed parents get involved, or even try to deal. They toss the kid at teh school at first opportunity, and that's it. They don't want to even look at the child. It's heartbreaking to me. When I compare that attitude to my friend Christina, who has three severely disabled boys and just loves them to peices and does everything she can to help them enjoy living, I just wonder what people are thinking. Those boys bring joy to her life, and she enjoys them, and lets them be who they are, and helps them to enjoy the world around them. We can wish they were not disabled, that they could talk, that they could walk, that they could live healthy, independent lives; but we also love them for who they are. They are not these disabilities.
Joey is not his autism. Joey is Joey. Why he does what he does is only important in that it gives me clues on how to help him, how to teach him, how to communicate with him. It actually gives me information about how he is perceiving the world around him, so that I can help him make sense of the world-- exactly as I am helping Andy make sense of his world.
Which brings me to the other end of the spectrum, the autistic folks who get all fired up and angry about people wanting to cure autism. I can see this side of the coin, too. Who wants to be told all their life that they are doing stuff wrong, that they are less than what was expected, that they can't do, can't be, can't please? The problem here is that by their arguments, we should do nothing. They will vehemently deny this, note that people with autism need support throughout life, that services for autistic adults is woefully absent, and that they are not saying that we shouldn't help. However, they then go to contradict this apologetic. It is very hard to say you don't want to be pushed to act like a normal person, and then wonder why no one will give you any services. Services are intended to help you function in a world of people that are not autistic. I am esepcially offended by autistic adults who say things like "independence isn;'t all its cracked up to be, I do best in dependent situations." Hello. I'd like someone to help me with my self-care skills, too. I'd like a maid to clean my house, a cook to make my food, and someone to hold my hand while I go to the grocery store. However, being an adult means being able to do things for yourself, to be responsible. Being independent is part of being grown-up. My job as a parent is to help my child grow up. Independence is the goal. I understand not everyone with autism will get there, but to harangue parents for having that goal is utterly offensive. It's as offensive as parents who want to make their kids "normal." To say you wished you could stay in some "magical" non-verbal world is saying you wish you could remain a child forever.
Hint: No one is "normal." Its OK to be "quirky" and "eccentric". But it is also a good thing to be able to dress, feed, and bathe yourself, be able to hold a job, and to have friends.
I am not asking Joey ot be a neuro-typical person. I understand that there are parents who do that. I am asking that Joey learn to care for himself, learn to relate to other people, and be able to have that opportunity to share his gifts with the world. For this, he needs help, and more help than Andy needs right now. He needs speech therapy, he needs occupational therapy, he needs intensive training to teach him how to learn and how to relate. He needs to have a connection between himself and the world around him. Its OK to be processing the information differently, but he needs to be processing the information.
Which brings my morning rant around to a another problem I see across the spectrum of the autism community: there is more than one kind of autism. This seems to be blatantly ignored. I have listened to parents of children across the spectrum of ASD, and the picture has become painfully clear to me that there really are at least two types of autism. Some children are born with autism already in play. Joey is this type. Knowing what we know now, we can see that Joey was autistic even in the hospital, when he freaked out over a warm blanket, and could grab and flick the doctor's stethoscope. Yes, as a newborn. Then there are the kids where the autism is triggered. They run into a problem, and they go overnight from being a happy, neuro-typical kid to silence and frustration. The trigger can be any number of things. The MMR vaccine triggered one child. A severe bout of flu triggered another child. I knoew kids who were triggered from stress, from illness, from poisoning by metals or other toxins. It happens. In fact, Joey may have had his trigger right from the get-go, when he went into distress during delivery; perhaps all kids are triggered, and its just a question of when and how. Then again, there are the kids with unusual head growth, which may be more of the at-birth type. At any rate, there are kids who start from the get-go being autistic, and there are kids who are fine, and then become autistic. They all need help to be able to function in the world. We can't just leave them in that magical non-verbal world, because then they never learn not to wander into the street, to dress and care for themselves, to grow into the human community. And after all, we are all humans. As the Dalai Lama once noted, without the human community, one human alone cannot survive.
Wednesday, November 22, 2006
Commentary: 10 things Your Autistic Child Wishes You Knew
I am working on this as series of posts in reation to some of the "lists" I have been seeing about autism and children with autism. Some of the lists are good. Some of them are not. I'm going to start with one that is well-intentioned and useful, but which obscures problems associated with autism and getting services for children with autism.
Part One: Ten Things Your Autistic Child Wishes You Knew
This is a list that was posted on an autism support board I was reading.
1. I am a child with autism. I am not "autistic". My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you just fat (overweight), myopic (wear glasses), or klutzy?
Commentary: Actually, when providing services or trying to get services, you do describe yourself as fat/obese, myopic, or even clumsy. If I want services for diabetes, I am referred to as diabetic. The problem comes when everything related to my child is blamed on his autism. 'Normal' children(or more properly, 'neuro-typical') have sensory issues, intense interests, and communication problems. Normal is what you are. There is no such thing as a neuro-typical individual; the idea is an ideal, and we all have quirks. The autism is only a problem when it become debilitating, and then we need to disccus Joey as autstic, in order to get him some help for dealing with attributes related to his autism which do not allow him to function in the neuro-typical, non-autistic world- blocks to his independence and happiness.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging away. The meat cutter screeches, babies wail, carts creak, the flourescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out usausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles in Aisle 3 with ammonia... I can't sort it out, I'm too nauseous!
Because I'm visually oriented, this may be my first sense to become overstimulated. The flourescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the light bounces off everything and distorts what I'm seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in consttant motion, too many items for me to be able to focus, and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try to regroup.
Commentary: This item is useful for people with no background or understanding of autism. However, trips to the store or into the outside world are not "hell" for all people with autism. The point is to highlight sensory issues that are possible. Joey loves going to the store (though lately the Walmart has been a bit overwhelming). However, he has vestibular issues. Ever walked down the stairs, miscounted, and thought there was one more step? remember that feeling of your foot suddenly meeting the floor, when you were expecting more time before the shock hit your foot? My child goes through life liek that, with every step.
I also know that Joey does not only tunnel-vision, but tunnel-hears. When there is just too much, he cannot deal, and cannot either see or hear you; or he cannot filter propoerrly, so is seeing and hearing things other than what you think he is hearing or seeing. Neuro-typical people do this as well. Ever be listening intently to music or watching something, and suddenly realize someone is trying to get your attention?
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear. "!!%#@%*^, Billy. (*&)^^$%$" Instead, come speak directly to me in plain words. "Please put your book in your desk. It's time to go to lunch." This tells me what you want me to do, and what is going to happen next. Now it's much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say "Hold your horses cowboy!" when what you really mean is "Please Stop running." Don't tell me something is a "piece of cake" when there's no dessert in sight and what you really mean is"This will be easy for you to do". When you say "It's pouring cats and dogs", I see pets coming out of a pitcher. Please just tell me "It's raining very hard". Idiom, puns, nuance, double entendre, and sarcasm are lost on me.
Commentary on 3 and together: Problem? In dealing with the neuro-typical world, these children need to learn about idioms and complex instruction and speech pattern. You cannot get a regular job and expect everyone around you to accommodate a need for plain English. If the goal is to help these people be independent, we need more services for speech and language. However, no one wants to provide them. The schools provide minimal service only if you have a severe (25% or greater) delay in speech and language skills. Insurance often does not cover speech therapy, as the service is viewed as educational. You get caught in a catch-22 of semantics!
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something's wrong.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages that I've memorized from the world around me to compensate for my language deficits, because I know I'm expected to respond when spoken to. They may come from books, television, or speech of other people. It's called echolalia. I don't necessarily understand the context or terminology I'm using, I just know that it gets me off the hook for coming up with a reply.
Commentary: this is just more emphasis on the need for proper, appropriate, adequate speech and language instruction and services. To be able to function, an individual needs to handle complex and abstract concepts and thought. We need to do more work on how to teach these skills, just as we teach them how to learn other concepts and skills.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me to learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations.
Commentary: This item implies that visual orientation is due to language difficulty; however, I would suggest that the other way around is more likely. Because Joey is so visually oriented, oral communication is more difficult, as it makes less sense. Many autistic individuals (not all) are very proficient readers, and can communicate very well using computers and written language; however, they become like Mrs. Who when it comes to forming their own thoughts and words orally.
I have no problem with raising a Mrs. Who, so long as we can make the quotes all appropriate.
7. Focus and buildon what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.
Commentary: I have been begging Joey's teachers and therapists to do this- let's use the skills he does have, the interests and strengths he displays, to teach him things he has more trouble understanding and skills he has trouble mastering. I am tired of paying money to have him evaluated and programs planned, only to have those programs include teaching him to count, name colors, and recognize letters. He already counts to 120, knows all his colors (and in fact, defaults to this if he doesnt't understand the question you are asking), and can read. Thanks. Can we please use these skills to teach him to ask questions, respond to multiple cues, and other important building-block skills?
8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.
Commentary: When I hear about the trouble the parents with elementary-aged kids are having with getting the school to organize social groups, it makes me extremely angry. Other kids get opportunities to build social skills- lunchtimes, parties, class changes, special events- my child deserves a change to build these important skills as well. Social skills are vital life-skills. Without them, you cannot hold a job, participate in human relationships, or function with other people. We all know people with poor social skills, and the stigma they face. Who wants to be around people who are rude, cold, or appear self-centered? People who seem to ignore basic social etiquette? We label them as nerdy, weird, eccentric. We ostracize them. We don't invite them to the Christmas party, to lunch, or even to small conversation. We actively exclude people who are not pleasant to associate and socialize with. Social skills need to be taught, emphasized, and worked on, just as much as any OTHER skill. Yes, social skills are vital to independence and success!
9. Try to identify what triggers my meltdowns. This is termed the 'antecedent'. Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses have gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
Commentary: This is a fun one. What situations cannot be avoided? What skills are needed to get Joey through these situations? My school personnel are sayign he cannot tantrum and be in an inclusion setting. This is bullcrap. His classroom may need a paraprofessional to watch for antecedents and help the teacher with teaching coping skills, but these meltdowns are not normal. They are not intentional. They are part of a disibility that should be accomodated, and when he is accomodated properly, THEY WON'T HAPPEN.
10. If you are a family member, please love me unconditionally. Banish thoughts like "If he would just..." and "Why can't she..." You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you that I'm worth it.
Commentary: I thought this was an interesting item when I read it. When I wasn't fulfilling my parents' expectations for me, I bet you they were thinking "If only she would just..." and "Whay can't she...?" And in fact, when I am askign these questions, I am looking for answers to help Joey learn necessary skills. It also completely discounts a parent's frustration, which occurs even with parents of neuro-typical children. Are parents of neuro-typical children allowed to be upset, disappointed, and frustrated? If they are allowed, why aren't I? Perhaps we need to focus on the outcome instead. Being frustrated, disappointed, or upset does not give a parent permission to have their own temper tantrums. However, it happens. Then what? And what about other "family members"? And what about supporting those parents who are trying hard to support their children? Insurance semantics, school manipulation, anything and everything not to get services to my child, and telling me I have to now be a professional child advocate, speech therapist, occupational therapist, school teacher, special education teacher, etc.... Hello. I'm an art historian. If I could suddenly be all of these things, why do I have to pay all these people? Why do they have to go get college degrees in order to practice? What's that all about?
Continuing item #10:
It all comes down to three words: Patience. Patience. Patience.
Commentary: Yes, indeed. Somehow parents of disabled and "differently abled" children are supposed to have an extra measure of patience. It would be nice if those who are supposed to be supporting my child- his teachers, his therapists, his administrators, etc- would show that same support and patience... It get very frustrating to have pateince preached at you, when everyone around you is working against you, resulting in stress- that lowers patience.
Continuing item #10:
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts that autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?
Commentary: Well, no. Joey does lie. He does tattle on classmates. He does try to cheat at games. There are people he likes, and people he doesn't like, which is definitely "passing judgement." These are normal things to be doing. However, he does have important talents and abilities. He may not be good at speaking, but he can tell time and read and count and understands concepts of quantity. He may not be able to initiation play with his classmates, but he can ride a bike in figure-8s and is excellent at memory games. This item was simply not stated very well.
Continuing item #10:
You are my foundation. Think through some of those societal rules and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
Commentary: teaching social graces and basic social rules is vital to independence. Why is it necessary to sit in a resteraunt? Because you disturb other people if you stand to eat. If you don't greet people, they may find you rude. If you can't keep your hands to yourself, you could be arrested for assault! Which social rules do you really think can be set aside? How will setting those rules aside help the child become independent?
Continuing itme #10:
I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
Commentary:
We only speculate that these people has an ASD. We don't know. However, I like the inclusion of Einstein on this list. I keep hearing about "Einstein Syndrome"... but from everything I read about it, it sounds like ASD to me! High-functioning people with autism still have autism. They still need to be taught to learn and to socialize. They need to be taught skills to encourage independence. They need to have their sensory issues addressed. They still need services. They have the same right to the opportunity to live independent, functional lives as any neuro-typical child.
Part One: Ten Things Your Autistic Child Wishes You Knew
This is a list that was posted on an autism support board I was reading.
1. I am a child with autism. I am not "autistic". My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you just fat (overweight), myopic (wear glasses), or klutzy?
Commentary: Actually, when providing services or trying to get services, you do describe yourself as fat/obese, myopic, or even clumsy. If I want services for diabetes, I am referred to as diabetic. The problem comes when everything related to my child is blamed on his autism. 'Normal' children(or more properly, 'neuro-typical') have sensory issues, intense interests, and communication problems. Normal is what you are. There is no such thing as a neuro-typical individual; the idea is an ideal, and we all have quirks. The autism is only a problem when it become debilitating, and then we need to disccus Joey as autstic, in order to get him some help for dealing with attributes related to his autism which do not allow him to function in the neuro-typical, non-autistic world- blocks to his independence and happiness.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging away. The meat cutter screeches, babies wail, carts creak, the flourescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out usausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles in Aisle 3 with ammonia... I can't sort it out, I'm too nauseous!
Because I'm visually oriented, this may be my first sense to become overstimulated. The flourescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the light bounces off everything and distorts what I'm seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in consttant motion, too many items for me to be able to focus, and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try to regroup.
Commentary: This item is useful for people with no background or understanding of autism. However, trips to the store or into the outside world are not "hell" for all people with autism. The point is to highlight sensory issues that are possible. Joey loves going to the store (though lately the Walmart has been a bit overwhelming). However, he has vestibular issues. Ever walked down the stairs, miscounted, and thought there was one more step? remember that feeling of your foot suddenly meeting the floor, when you were expecting more time before the shock hit your foot? My child goes through life liek that, with every step.
I also know that Joey does not only tunnel-vision, but tunnel-hears. When there is just too much, he cannot deal, and cannot either see or hear you; or he cannot filter propoerrly, so is seeing and hearing things other than what you think he is hearing or seeing. Neuro-typical people do this as well. Ever be listening intently to music or watching something, and suddenly realize someone is trying to get your attention?
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear. "!!%#@%*^, Billy. (*&)^^$%$" Instead, come speak directly to me in plain words. "Please put your book in your desk. It's time to go to lunch." This tells me what you want me to do, and what is going to happen next. Now it's much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say "Hold your horses cowboy!" when what you really mean is "Please Stop running." Don't tell me something is a "piece of cake" when there's no dessert in sight and what you really mean is"This will be easy for you to do". When you say "It's pouring cats and dogs", I see pets coming out of a pitcher. Please just tell me "It's raining very hard". Idiom, puns, nuance, double entendre, and sarcasm are lost on me.
Commentary on 3 and together: Problem? In dealing with the neuro-typical world, these children need to learn about idioms and complex instruction and speech pattern. You cannot get a regular job and expect everyone around you to accommodate a need for plain English. If the goal is to help these people be independent, we need more services for speech and language. However, no one wants to provide them. The schools provide minimal service only if you have a severe (25% or greater) delay in speech and language skills. Insurance often does not cover speech therapy, as the service is viewed as educational. You get caught in a catch-22 of semantics!
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something's wrong.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages that I've memorized from the world around me to compensate for my language deficits, because I know I'm expected to respond when spoken to. They may come from books, television, or speech of other people. It's called echolalia. I don't necessarily understand the context or terminology I'm using, I just know that it gets me off the hook for coming up with a reply.
Commentary: this is just more emphasis on the need for proper, appropriate, adequate speech and language instruction and services. To be able to function, an individual needs to handle complex and abstract concepts and thought. We need to do more work on how to teach these skills, just as we teach them how to learn other concepts and skills.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me to learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations.
Commentary: This item implies that visual orientation is due to language difficulty; however, I would suggest that the other way around is more likely. Because Joey is so visually oriented, oral communication is more difficult, as it makes less sense. Many autistic individuals (not all) are very proficient readers, and can communicate very well using computers and written language; however, they become like Mrs. Who when it comes to forming their own thoughts and words orally.
I have no problem with raising a Mrs. Who, so long as we can make the quotes all appropriate.
7. Focus and buildon what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.
Commentary: I have been begging Joey's teachers and therapists to do this- let's use the skills he does have, the interests and strengths he displays, to teach him things he has more trouble understanding and skills he has trouble mastering. I am tired of paying money to have him evaluated and programs planned, only to have those programs include teaching him to count, name colors, and recognize letters. He already counts to 120, knows all his colors (and in fact, defaults to this if he doesnt't understand the question you are asking), and can read. Thanks. Can we please use these skills to teach him to ask questions, respond to multiple cues, and other important building-block skills?
8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.
Commentary: When I hear about the trouble the parents with elementary-aged kids are having with getting the school to organize social groups, it makes me extremely angry. Other kids get opportunities to build social skills- lunchtimes, parties, class changes, special events- my child deserves a change to build these important skills as well. Social skills are vital life-skills. Without them, you cannot hold a job, participate in human relationships, or function with other people. We all know people with poor social skills, and the stigma they face. Who wants to be around people who are rude, cold, or appear self-centered? People who seem to ignore basic social etiquette? We label them as nerdy, weird, eccentric. We ostracize them. We don't invite them to the Christmas party, to lunch, or even to small conversation. We actively exclude people who are not pleasant to associate and socialize with. Social skills need to be taught, emphasized, and worked on, just as much as any OTHER skill. Yes, social skills are vital to independence and success!
9. Try to identify what triggers my meltdowns. This is termed the 'antecedent'. Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses have gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
Commentary: This is a fun one. What situations cannot be avoided? What skills are needed to get Joey through these situations? My school personnel are sayign he cannot tantrum and be in an inclusion setting. This is bullcrap. His classroom may need a paraprofessional to watch for antecedents and help the teacher with teaching coping skills, but these meltdowns are not normal. They are not intentional. They are part of a disibility that should be accomodated, and when he is accomodated properly, THEY WON'T HAPPEN.
10. If you are a family member, please love me unconditionally. Banish thoughts like "If he would just..." and "Why can't she..." You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you that I'm worth it.
Commentary: I thought this was an interesting item when I read it. When I wasn't fulfilling my parents' expectations for me, I bet you they were thinking "If only she would just..." and "Whay can't she...?" And in fact, when I am askign these questions, I am looking for answers to help Joey learn necessary skills. It also completely discounts a parent's frustration, which occurs even with parents of neuro-typical children. Are parents of neuro-typical children allowed to be upset, disappointed, and frustrated? If they are allowed, why aren't I? Perhaps we need to focus on the outcome instead. Being frustrated, disappointed, or upset does not give a parent permission to have their own temper tantrums. However, it happens. Then what? And what about other "family members"? And what about supporting those parents who are trying hard to support their children? Insurance semantics, school manipulation, anything and everything not to get services to my child, and telling me I have to now be a professional child advocate, speech therapist, occupational therapist, school teacher, special education teacher, etc.... Hello. I'm an art historian. If I could suddenly be all of these things, why do I have to pay all these people? Why do they have to go get college degrees in order to practice? What's that all about?
Continuing item #10:
It all comes down to three words: Patience. Patience. Patience.
Commentary: Yes, indeed. Somehow parents of disabled and "differently abled" children are supposed to have an extra measure of patience. It would be nice if those who are supposed to be supporting my child- his teachers, his therapists, his administrators, etc- would show that same support and patience... It get very frustrating to have pateince preached at you, when everyone around you is working against you, resulting in stress- that lowers patience.
Continuing item #10:
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts that autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?
Commentary: Well, no. Joey does lie. He does tattle on classmates. He does try to cheat at games. There are people he likes, and people he doesn't like, which is definitely "passing judgement." These are normal things to be doing. However, he does have important talents and abilities. He may not be good at speaking, but he can tell time and read and count and understands concepts of quantity. He may not be able to initiation play with his classmates, but he can ride a bike in figure-8s and is excellent at memory games. This item was simply not stated very well.
Continuing item #10:
You are my foundation. Think through some of those societal rules and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
Commentary: teaching social graces and basic social rules is vital to independence. Why is it necessary to sit in a resteraunt? Because you disturb other people if you stand to eat. If you don't greet people, they may find you rude. If you can't keep your hands to yourself, you could be arrested for assault! Which social rules do you really think can be set aside? How will setting those rules aside help the child become independent?
Continuing itme #10:
I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
Commentary:
We only speculate that these people has an ASD. We don't know. However, I like the inclusion of Einstein on this list. I keep hearing about "Einstein Syndrome"... but from everything I read about it, it sounds like ASD to me! High-functioning people with autism still have autism. They still need to be taught to learn and to socialize. They need to be taught skills to encourage independence. They need to have their sensory issues addressed. They still need services. They have the same right to the opportunity to live independent, functional lives as any neuro-typical child.
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