Ask James Williams
A column published by S.I. Focus, a magazine published quarterly.
Introduction to the S.I. Focus Column
My name is James Williams. I live in Northbrook, Illinois, in the Chicago metropolitan area.
I also have high-functioning autism.
I live a very “unconventional” life by normal standards. For one thing, I am home-schooled. This has sheltered me from a lot of misery that other autistic people have to face. It has also given me the time to focus on my speaking and my writing.
What is my life? I do various projects at home as a part of my education. They have ranged from learning about energy to anthropology. I travel around speaking about my life and autism and certain therapies that help children with autism. I maintain a website where my speeches and essays are available for anyone to read. Last year I attended a discussion group at the local library that discusses international and national affairs and history. I am also volunteering at a local daycare center.
At the age of eight I co-wrote “The Self-Help Guide for Special Kids and their Parents.” This resulted in letters around the country from parents of autistic children. Then, at the age of 11, I was approached by the head of MAAP, an Indiana-based autism support group, to speak at their next conference. After a four-year-speaking hiatus due to a long illness and to pursue my writing, I began speaking again at the age of 15. After giving a speech, I am often given difficult questions about advice for certain situations. I have learned that lacking a “theory of mind” is mutual. I have difficult understanding normalcy the same way other people have difficulty understanding autism.
Finally, at the 2005 Autism Society of Wisconsin conference in Green Bay, it was suggested that I start an “advice column” for parents. Starting with the Winter Issue of 2006, I will be a regular part of S.I. Focus Magazine.
In this column, you can ask me questions about autism, and I will answer them as truthfully as possible. The most important ones will be published in the magazine and, with permission, on my website. But remember—try to be as specific about your situation as possible. Autism is a diverse disorder, and solutions for one child are likely to be irrelevant to another child.
One question frequently asked is:
My child has been given a diagnosis of autism. Should we expect certain things from him or just wait to see how he develops? We’re not sure how aggressive to be.
Autism consists of many symptoms, and those symptoms vary from child to child. However, some symptoms cause more trouble in an autistic person’s life than others. For this reason, you should be more aggressive about some issues and less aggressive about others, based on your child and the resources you have available.
The autistic symptom in particular that causes the highest problems is the inability to communicate. If your child is nonverbal, your highest priority should be to teach him how to talk. You should be very aggressive in this situation. My mother was very aggressive in teaching me language and gave me EVERY “do-it-yourself” language program she could find. She also gave me a lot of “English as a Second Language” tapes because I learned English like a foreign language. Communication is the most important skill an autistic person could have. This is why most “success stories” regarding autistic kids involve how they gained the ability to communicate.*
Other symptoms, however, you should aggressively pursue in certain contexts. One example is social skills and friendship. Autistic individuals need to learn social interactions. But they need safe environments. When you have found a safe environment, aggressively try to keep that environment. But if your child is complaining about being bullied, believe him, and get him out.
Finally, symptoms that are a result of the autistic person’s coping mechanisms should not be treated at all. Forget the belief that you have to stop a child from head-banging. He’s doing it to calm himself down from a terrifying world. Allow him to play frozen when it is okay for him to do so. If he is reaching his limit and feels unsafe, let him come home.
* While communication is a large part of an autistic child’s success, it is possible to communicate without language. This has been shown by low-functioning autistic success stories such as Jesse Park, Tito, and Sydney Edmond, who found ways of communicating independently from language, as well as many children who are physically handicapped as well as nonverbal who use special machines they can type into that will then use computer-generated voices to speak what they just typed.
In order to respect the privacy of the individuals, asking questions, everyone who asks me a question will be referred to as Mr. or Mrs. X.
Questions Asked By Readers of S.I. Focus:
1. Dear James,
My 7 yr old son was diagnosed with Asperger Syndrome last year. One thing I noticed is that he keeps saying his classroom is too loud and sometimes he gets so upset by it that he runs out of the classroom. Can you explain this behavior and offer suggestions on helping the school understand this behavior and help him more? Thanks James.
There are many possible reasons for this, but given the evidence shown here, your child appears to have sensitive hearing. His problem is exactly the way he says it--the sounds of the classroom are just too loud. What more needs to be explained? The school just needs to take him a little more seriously.
If your child is sensitive enough, he might be hearing sounds that aren't from the classroom at all--they're from the hallway, the other classrooms, the classrooms adjacent to him, even the kids playing on the playground. However, he's likely unable to describe that, so he thinks everything is coming from the classroom.
With this understood, is it any wonder he tries to run out? Wouldn't we all want to leave from a room that was loud if we could?
So what's the solution? Again, there are solutions that can be implemented, but this is dependent on how accommodating the school is. You could get him used to wearing earplugs, or have him wear sound-protective headphones (like the headphones used by trainees at shooting ranges). Earplugs are better because they are not as visible, obviously, and are less likely to attract bullies from teasing him. Forget the argument that the child will be unable to hear the teacher with this protection. If he's sound-sensitive, that is not likely going to be a problem. I have had sensitive hearing myself, and when I needed headphones in a loud environment, I had no trouble understanding what everyone was saying.
To quote an autistic person when she explained why she wore earplugs, "It's not so I can't hear you, is just so your sound doesn't cut through my head like a knife." If that's how extreme it is, why should we worry about a child losing his ability to comprehend what you're saying?
2. Dear James,
My nephew is nine years old and has always walked on his tippy toes and has always had conversations that seem inappropriately immature and unrelated for his age. Additionally, he seems to be addicted to the computer since this is the only activity that anchors him and keeps him from literally "bouncing off the walls." Did you, James, ever go through such a phase? If so, is this a phase that you think you outgrew, or was it some specific intervention that helped you to develop normalized behaviors? Can you give me any insight as to why my nephew continues to walk on his toes and to exhibit these behaviors?
Thank you for your reply. Mrs. X
Dear Mrs. X,
There are quite a few possible reasons for those behaviors, and I'll state them here.
If your child is tiptoeing and it is sensory-based, then it could be for the following reasons:
He cannot stand the feeling of his feet on the ground as he walks. Thus, he desires to "minimize" the pain as much as possible. Normal walking is painful, and we all try to minimize our exposure to pain. It's a human instinct.
Does he tiptoe when his shoes are on, but not when his shoes are on? If so, he might feel uncomfortable when his shoes are on. His feet might feel awkward inside his shoes. He might be tiptoeing so that he can walk without feeling the awkwardness that emerges when his shoes are put on.
A third possibility exists. Perhaps he has hyper-sensitive hearing, and cannot stand the sound of his walking. Since tiptoeing is often more silent than walking (which is why tiptoeing is often used by children who are sneaking in to some restricted area) he might be tiptoeing because he doesn't have to hear himself walking.
However, there could also be "non-sensory reasons" for this behavior or reasons that are unique to him. Remember that individuals with autism and other sensory problems often process information differently, make connections between things that are not usually made, and follow their own personal rules. For example, I myself used to like tiptoeing. Was it for sensory reasons? No. It was because my mother introduced me to feminist principles and explained to me some of the suffering that women had to go through when they wore high-heeled shoes, which forced them to perpetually walk on their tiptoes. As a nine-year-old, I decided to walk on my toes because I felt sorry for those women and wanted to experience what they went through in their honor. I was also reading a lot of American Girls books because of the historical material, and there was a lot about the suffering of women and girls and minority groups, which I identified with. Finally, I wanted to try tiptoeing when I read about one of the characters in the Mr. Men children's book series by Roger Hargreaves.
These are probably not the reasons why your nephew walks on his toes, but ask yourself: What types of books and TV does he watch? Perhaps his favorite TV show character or book character does a lot of flying or walking on ledges or tight ropes, and he wants to be like his favorite fictional character. Although the principle of looking for the unusual may not apply here, whenever another strange or crazy-seeming behavior emerges, try to think out of the box of normalcy and try to figure out if there is some reason that is logical to him.
As for the computer addictions...
He could be computer-addicted because he's getting sensory activities that his brain desperately needs. The sensory intensity of the computer is likely to be on par with the stimulation he's trying to give himself by "bouncing off the walls." This applies to neurotypical as well as autistic children--at the daycare where I volunteer I showed a hyperactive toddler a piece of software that shows displays of fireworks and lasers, and that toddler sat down mesmerized for 10 minutes at the lights.
There are also non-sensory reasons as well. He might be trying to "get away" from a stressful world, and his world with the computer is predictable, compared to everyone else in his life.
I was a computer addict at one time as well. I don't know why, since that was when I was three and four, before I can remember my reasoning. All I can say is that I really liked going on the computer.
The conversations are likely based on mental ability. He obviously doesn't understand what to appropriately say in a conversation. You can try to teach him, but if he keeps making mistakes, it's a mental disorder, not a question of teaching him the right thing to say. I still have problems with conversations, and my mother has told me rules regarding conversations, but ultimately I learned them when I was mentally ready to, and outgrew the issues. But I outgrew them on my mental timetable--not the timetable expected of me from a child development book. The same applies to the computer addiction and the tiptoeing--I outgrew those as well, but on my timetable.
3. Dear James:
Thank you for your interesting insights. Here is my question to you:
Did you have trouble with all five senses when you were a young child (as far back as you can remember)? If you had trouble, could you state what trouble you had with each sense, and whether the problem resolved on its own, with therapy, or whether it persists today? For example, did you have trouble with certain sounds, certain smells, certain tastes, etc.? In general, were (are) you overly sensitive, or the reverse? If you were oversensitive, did exposure to the stimulus make you less sensitive over time or more sensitive?
are the problems I had with each of my five senses:
Smell. I tried to block out stinky smells if I was stuck in a situation where I had to smell them, or breathe through my mouth. However, I was rarely verbal about things stinking because I tried to block things out. This led my parents to believe that I lacked a sense of smell. I remember them talking about how I did not smell, when I knew I did but just did not understand why I had to tell them. So I did not, and they still believed that I lacked this sense.
Over time, these problems seemed to go away. I can deal with the smell of eggs now, as well as smoke. However, I still have a few things I cannot stand from long ago--such as melted American cheese. However, I often eat other cheeses that my mother and sister cannot stand, such as Feta cheese, and I don't care about that smell at all. How have I dealt with existing issues with smell? Either I will hold my breath, or I will try to understand why I have to be in a situation where a certain place stinks, since I like to go to those places. For example, I went to a festival in rural Iowa where a campfire was burning constantly. I liked the festival so I endured the smoke smell even though I did not like smelling it.
Sound. I do not remember my sensitive hearing prior to when I had A.I.T. at the age of four. However, I do know that I had sensitive hearing because I remember being unable to stand eating at restaurants and going to public places. I also have seen my audiogram which indicates that I could hear at -10 decibels at certain frequencies. Most people are unable to hear
-10 decibels at any frequency. This was the softest frequency I was actually tested on, so maybe I heard even softer.
After I had A.I.T., my sensitive hearing went away, but temporarily. At the age of ten, in the spring of 1999, my sensitivities returned, six years after they went away. A fire drill pierced the silence and stunned me in a way it never had before. I have been sound sensitive ever since, but not totally--I can deal with "sustained" loud noise such as rock music and hand clapping even if it might be unpleasant, but feel electrocuted when I must endure sudden, sharp noises like barking dogs and fire drills. I will never have a dog as a pet. I gradually started wearing earplugs, and then one year ago my sensitivities actually went down a bit. I had to give up my earplugs when they impaired my hearing significantly. Now I wear them if I know I am in a situation that might involve a sudden loud noise, or I try to find ways of knowing when a loud noise is coming in advance (like a fire drill) so I can prepare for it. This is the one sensitivity that has not steadily improved over time, even after two more sessions of A.I.T., unlike my other sensory issues.
Taste. Taste is an issue specific to food, and again, this was an issue that went away over time. I would avoid foods that I could not stand, and when my mother tried to give me a new food (or anything new), she forewarned me by calling it a metaphor we used, a "Temple Grandin," which we named after the well-known animal theorist who commented that autistic people do not like new things "shoved in their faces." This was our way of making something new seem not-so-new. A new thing would terrify me, but when my mom called the new thing a "Temple Grandin," then it wasn't wholly new. It was the same as the new thing she had presented to me last week and the week before that. So the sensation of "newness" actually became a familiar feeling and, therefore, not so terrifying. When presenting me with a new food, she would say, "Here's your Temple Grandin," and it would be an experience I had already had.
I really hated something, I was not forced to eat it, but over time I became
able to eat more foods, especially if the problem was chewing the food or
swallowing it properly. The foods I hated were chunky tomato sauce (because of
the tomato chunks which made me gag), and steak (because it was so chewy). But
later I started liking steak to the point where my father and I made jokes
about how I always ordered a steak when we ate out. However, until the age of
seven, one thing I could not stand the taste of was water. I refused to drink a
drop of water until I was seven, and would only drink apple juice. It is
amazing that I did not die of dehydration, and I only began drinking water when
a doctor told my mom I was severely dehydrated.
I was, in a way, forced to deal with my taste sensitivities "or else." At one time the only foods I would eat were foods like pasta, pizza, and hamburgers. Then after several years of having a headache every day, we discovered I had a wheat allergy at age 8, and I was forced to try other foods. Even today, if I eat gluten, I get an allergic reaction, from a severe headache to severe chills and a sore throat, or even a fever. Over time, I suddenly was able to tolerate more foods, but I still cannot stand the taste of certain kinds of tomato chunks.
Sight. While the stereotypical autistic child with sight problems has trouble dealing with fluorescent or bright lights, sight problems can occur in other ways as well. I was never bothered by most lighting, with the one exception of flashbulbs from cameras, which I could not stand from the age of six to around the age of ten. My mother tried to protect me from pictures and would let me shut my eyes if I had to have a picture taken, or I would be allowed to have a picture taken without a flash. However, this problem went away just as suddenly as it emerged--I remember being able to have my picture taken, and then later suffering when I had a picture taken. Then I remember being able to have them taken again.
The area where my sight problems occurred the most was when I was eating food. Certain foods just "looked bad," and I would not eat them because their sight triggered me to gag just as much as the smell of other foods. I do not remember what foods in particular looked bad, but I do remember being unable to eat foods that did. If I could not stand a food because of its appearance, I would tell my mother and she'd put cereal boxes around my place at the table so I would not have to see the other people's food. That solved that problem.
Touch. I was never sensitive to anyone touching me. In fact, I often was far too affectionate than I should have been--trying to snuggle my sister and my mother at inappropriate times, even chasing my sister throughout the house for it.
My tactile sensitivities caused problems in the way I dressed and when I got my haircut. Having a haircut felt like getting my hair pulled. Thus, my mother and I would only get haircuts as few times as possible. However, getting cut with an electric razor was not painful the way getting cut by scissors was. For this reason, we requested the barber use the razor as much as possible when cutting my hair. Clothes were an issue because I could not stand the feel of jeans. They were scratchy, and bothered me. I dressed in sweat pants regularly until I turned twelve, and my father started buying my khakis and corduroys. Although this problem did improve over time (I now wear jeans without feeling scratched), I still, for the most part, wear khakis and corduroys, or a fancy business suit when I speak at conventions, which does not bother me. However, I do not like the feel of air on my legs or arms, so I never wear shorts in the summertime, and only wear short-sleeve shirts if I have to, even when the alternative is sweltering, because I hate the feeling of air on my arms also.
As you can see, I did outgrow many of these problems "naturally." But that does not mean that you should expect an autistic child's problems to go away. This does not always happen in every case. But as for your comment about whether or not exposure to the stimulus makes you oversensitive, the answer is that it does not help problems. An oversensitive child who is exposed to the stimulus more times than he should be is being put under unnecessary torture, and it makes him more sensitive because he becomes more terrified of the things he's sensitive to beforehand. There is one exception to this, however--if the exposure occurs in a controlled situation, like during A.I.T., or if an autistic child shines flashlights in his eyes or flicks the lights on and off rapidly. These are things many autistic kids, including myself at the age of eight, like to do, and it does not hurt them since they are trying to stimulate their eyes. If that is the case, you should not stop them, unless they share the problems that Liane Holliday-Willey does, which is being unable to feel pain the way others do even though they are hurting themselves.
4. Hi James,
I am an occupational therapist who works with kids on the autistic spectrum. A few of my kids prefer to work on the floor in a squatting position, despite frequent
tactile and verbal cues to "sit on their “bottoms". Can you explain this behavior? Thank you, James. Mrs. X
Dear Mrs. X,
Like all “mystery” behaviors, this one could be for many reasons. But here are two possibilities: First, the situation might not be about preference but pain avoidance.
Perhaps their backs or legs hurt when they sit on their bottoms. I myself used to feel excruciating pain in my legs when I had to sit cross-legged on the floor for an
assembly. My legs would eventually go numb, and I spent all my energy dealing with the pain and could not watch the assembly. A tactile-sensitive child might not like
any contact between his body and something else, like the floor. Squatting minimizes this contact and reduces the pain. If they keep resisting you, they might not see
why you are asking them to suffer with your “frequent tactile and verbal cues.” Resistance to pain is not an autistic trait. If something causes anyone pain, they try to
avoid it at all costs, no matter how many times they are told they must do the painful thing. You must ask yourself whether it is absolutely necessary for them to sit on
their bottoms, or whether you can adapt your therapies to their squatting position.
Second, if the issue is not one of pain, it could be a matter of understanding. Either they fail to understand those cues, or they do not understand why they must sit the
way you require. They might be wondering why you think you have the power to force them to do differently. In some traditional Buddhist cultures, squatting is the
normal way to sit, because it eliminates pressure on the spine. (This is sometimes referred to by Buddhists and Hindus as the “lotus position.”) Autistic children often
have low muscle tone, and they might lack the strength in their back muscles to sit up.
If the issue is that of a misunderstanding of instructions or an avoidance of pain, then your children are not defiant, and should not be treated like that. On the other
hand, if they truly are not in pain and they clearly understand the instructions, but still defy you, then you must treat them as defiant children and administer appropriate
discipline. However, with an autistic child, defiance is not the first thing you should think of.
5. Hi James,
Any ideas for how to support a child who likes to be undressed but in situations where running around in underwear is not okay?
Dear Mrs. X,
This is an interesting issue. It is also quite a cultural dilemma--as a longtime enthusiast of anthropology, I have read of numerous indigenous societies throughout the
world who routinely are outside naked, but that is another story.
I think there are two possible issues. First, it could be a failure to understand that it is inappropriate to be undressed in a public place.
At the same time, clothing itself could not be the issue at all. Your child may not like to wear clothes because the feeling of the clothes is painful on his body. How do
you determine the cause? First, you determine if he does not like wearing certain types of clothes or all clothes. Then you find numerous types of clothes: sweatpants,
khakis, jeans, polo shirts, rugby shirts, T-shirts, turtlenecks—and you try them on him or her. You see if your child reacts differently to different types of clothes.
Then you find clothes that are comfortable for him, and you let him wear those everywhere. I myself wore sweatpants day and night everywhere until I was about ten
or so. I still don't wear shorts because I hate the feeling of the air on my legs.
If an autistic child has to go somewhere formal, just explain to other people that he has autism--then they will understand why he is wearing Spider Man pajamas, for
example. It’s better than having him try to take his clothes off at a formal party, which is precisely what I did at age 5 when I was forced to wear formal clothing that I
couldn't stand at my older cousin’s wedding!
Remember, pain avoidance does not equal preference. Just as we all try to avoid painful situations unless we must deal with them, so does the autistic person. If
clothes hurt him, they hurt him. But if you’ve ruled out this possibility, then the problem could be a misunderstanding. This is when you try to find other ways of
explaining that you cannot be naked in a public place. The best way of doing this is by creating a “social story,” like the stories of Carol Gray. One reminder: If the
problem is sensory-related, a social story will not work! Even Carol Gray has admitted that to me in a conversation we had about social studies at an autism
Any ideas for a child who likes to run and run and run? Mr. X
Dear Mr. X,
Here are a few possibilities:
The child might like running because when he is moving around, he is not stressed, or he is trying to escape the stress of his life. He feels safe while he is running, as if
no one is able to catch (and hurt) him. Is he running from place to place, or just running out of control? Maybe he thinks that walking is too slow and running gives him
the speed he prefers.
There are some autistic children who hear and process information better when they are in motion. Temple Grandin has stated in her lectures that kids in motion do
better in speech therapy sessions than those who are forced to sit still. Perhaps the child is actually processing more about his environment when he is running around
in it rather than just sitting and looking at it.
My advice: If you can communicate to him, try to get him to understand that while he cannot run everywhere, you can take him to a track on a regular basis where he
can run for a set time. However, if the problem is running away, and you cannot communicate to him, then I agree with what other parents have done--lock your doors
from the inside, and bolt your windows. If he has to keep in motion while in the house, get him a treadmill or bouncy ball or trampoline, and let him stay on as long as
this is your mother speaking: Even though you and I talk regularly about your
life, I am still surprised by some of the things you write and say in your
presentations about your personal experiences. Sometimes you still hide your
stress or sensory discomfort or confusion from me, thinking I won't accept it.
How can parents of hypersensitive or disabled kids get those kids to talk more
about their secret discomforts and fears? You often talk about a lack of basic
trust as the culprit. How can parents encourage the development of that trust?
My answer: Do you remember when you forbade me from watching the movie Matilda? You said you didn't want me to see a movie in which most of the adults were evil and the kids were clearly victims who had the right to rebel. You believed that the portrait of grown-ups was too dark and improbable. And yet that movie captured what I was experiencing as an autistic child. Rather than giving me "new ideas," it was validating what I already felt.
According to Roald Dahl, who wrote the book Matilda, parenting is totalitarianism. The relationship between an adult and a child is similar to that of a tyrant and his subjects. Dahl vowed to write literature in which children attacked and fought adults and eventually won. His beliefs about adults were rooted in the tyranny of his own parents and the teachers at his boarding school. To Dahl, childhood is a time of perpetual war. It is also known that Dahl never wrote anything about his misery in boarding school to his parents, and kept it from them. He never wrote about the anger he felt to his parents--rather, he wrote about it in his novels.
As cold as this might seem, Dahl unwittingly described the autistic condition better than many autism specialists. To the child with autism, adults and authority figures are tyrants. This is because the child with autism lives in a world where he is required to do things that hurt him. School is the ultimate example. Here is a place where many autistic individuals are suffering, yet society and our legislature have mandated that children must attend school. Compulsory school is compulsory suffering if youre autistic-from the teacher who cant understand why you dont understand her to the child who teases you at recess to the dreaded fire alarms to the stink of the cafeteria.
If something hurts you, do you go to the person who inflicted that pain? Do you trust someone who doesn't know or accept what you are truly feeling? Of course not.
You, the parent, are not a villain. Yet your child might see you in this extreme fashion. If he is hurt by the decisions that you make--or by merely living---then he will fear you. Trust is gained through understanding. This is not a simple concept. By understanding, I mean that you listen to your child and accept his feelings for what they are, not what they should be or what you want them to be or what society wants them to be or what the school says they should be. Yet when you expect him to "get used to" the world, youve hurt him. A lack of basic trust is not the culprit, it is the consequence of the culprit-that failure of understanding between you and your child and the pain that you unknowingly inflict on him.
So what does a parent do? First, the parent has to come to terms with the fact that the child may never trust him or her. Even the most understanding parent makes mistakes, and trust for an autistic child often requires that a person know everything about him and do everything perfectly. This is because mistakes often result in suffering. Second, remember that a lot of normal, routine things are horribly painful for an autistic child, things he will never get used to. The only way to deal with these things is to allow your child to avoid them. Once he sees that you will protect him from suffering rather than force him to "get used to it," then maybe he will begin to trust you.
Discipline experts often point out that children need parents to be parents, not friends. However, autistic children sometimes need parents to be friends rather than parents. This is for two reasons-parents are the only people many autistic people have for support, and autistic children often dont have any friends that can play that essential role in development. To help develop basic trust, always assume if he tells you he is suffering, this is how he feels. And remind your child that even though you are not perfect, you will still be there so that he can talk to you about the suffering he is going through to simply live.
James, I'm the grandmother of a six year old boy who, like you, has high functioning
autism. I'm homeschooling him full time because we do not believe that
the school district can provide him with either safety or a reasonable
education. I was very interested in your comments about school in the
last SI Focus and I am certain that Ben would agree with what you said. Do you
think homeschooling is a better option for autistic kids?
and no. I think that homeschooling is a better idea for many autistic kids, but
I do not believe that homeschooling works for all autistic kids. Likewise, I do
not believe homeschooling works for all kids in general. Your reasons for
homeschooling him, however, are right on the money. If the school cannot
provide him with "safety or a reasonable education," as you put it,
and it is within your means to homeschool your child, do so. Schools have to
educate more than one child at a time, that's what makes providing
accomodations difficult for children in a mainstream classroom. Even special-ed
classrooms sometimes expose children with autism, especially high-functioning
ones, to children far different from their grade level that they might not even
relate to. Because of these difficulties, it is often hard to place a
high-functioning autistic child in a proper classroom setting since
they're often too high-functioning for special-ed classrooms, yet still don't
function enough to tolerate regular classrooms because they are still not
normal. That lacking in normalcy eventually reveals and often causes problems
for the simple fact that the child is still autistic. But since he is being
treated like a neurotypical child and given the same expectations of a
neurotypical child, he is not given help when needed or is accommodated when a
problem arises due to his autism.
When you are homeschooling your child , you have control over your child's education, you can protect him, and you can be there to help him when he needs it. Many autistic individuals need to have that protection. Even though you might be what other kids call "overbearing," your child might not even care since that's he needs that extra protection. However, if a child truly wants to go to school or is not having trouble with school, then it is worth it for them to stay in school. Likewise, if your child wishes to return to school at any time, he should be allowed to but should be made aware of what he is getting himself into so he can make his decision carefully.
Finally, make sure you are aware of the laws regulating homeschooling in the state or province you reside in. One place to find out where legislation can be found regarding homeschooling for each state in the U.S. is at www.hslda.org/laws/. Also remember that some states often consider homeschooling a "state" power versus a shared power between the "state" and the "district." For example, some states, like my home state of Illinois, have statewide laws on homeschooling. Based on conversations, however, with people I know from Illinois' neighboring state, Wisconsin, school districts often have laws specific to the district about homeschooling.
[From Joan Matthews', James' mother: I wanted to say that homeschooling works best if there is a good match between the child and the parent or whoever is teaching. James and I were always a good team, and so he benefitted greatly from the positive educational experiences at home. On the other hand, if homeschooling requires star charts, behavior goals, arguing, 1-2-3 countdowns because of noncompliance, point systems, and a combative relationship in which the parent insists and the child resists, then this will serve to alienate the child from his parent the way he was alienated from his teachers at school. When I used to go to IEP meetings, teachers would argue against homeschooling saying, "Parents should be parents, and teachers should be teachers. Parents should not be teachers." And I would think, How absurd. But if the child's attitude truly is, "I want my mommy to be a mommy, not my teacher," then homeschooling is not the best choice.]
9. My autistic son, Ben, gets to go to the Family Fun Center in our town, and use the various games and climb on the structure there. It's indoors and very loud (loud enough to bother me, and I'm half deaf myself), but the noise there doesn't seem to bother him the way the music does at church. I asked him how come he can tolerate a very high decibel noise background there, but not the music and singing in church, and he giggled at me but didn't really explain. The way he giggled, I wonder if he really could tolerate the music in church now (well, at least as long as I'm not singing, which seems to bother him more), but he gets so bored at all the talk he can't follow, so he might be complaining about the music to avoid the blah-blah-blah. What do you think?
I believe all possibilities for why autistic people behave in certain
situations are valid until the actual reason is proven, such as the reason you
suspected about avoiding listening to the talk in church, there's the possibility
of a more logical explanation for that difference in his sensitive hearing:
To start, not all sounds are created equal. Each sound lies on a different frequency, has an intensity level that differs on different frequency. Meanwhile, our ears hear things differently on different frequencies. When a person receives an audiogram, their hearing is not only tested but is also typically tested based on how well they can hear on certain frequencies. Dr. Guy Berard, the inventor of the therapy Auditory Integration Training, found that autistic individuals often are more sensitive to certain frequencies than others. This was verified by Sharon Hurst, a therapist who has provided his therapy for 10+ years, when she found that the 1-8000 Hertz frequency range was often more problematic to individuals with autism than other frequency ranges. I later found by analyzing the sounds of fire drills that the sounds of most fire alarms heard during school fire drills typically are concentrated between 2-6000 Hz. I discovered this by playing digital MP3 recordings of fire alarms through Windows Media Player 9, software that will show you how intense sounds are on certain frequencies via visual displays produced by Windows Media Player. By analyzing these displays, I also saw that that fire alarm sounds are concentrated entirely around 4000 Hz. This, to me, is one explanation as to why fire drills are so painful for children with autism even when sounds that are just as loud may not be.
Singing in church and dissonant noise in another center are two different types of sounds, and they intensity on various sound frequencies are different. Since pitch and tones are a large factor in those two sound mediums, the frequencies of the music are related on the pitch or the tones. Higher pitches and tones are on higher frequencies. Lower pitches and tones are on lower frequencies. Throw in the fact that Dr. Berard showed how autistic individuals sometimes are more sensitive to some frequencies than others, and an explanation emerges: your child is sensitive to some frequencies and not others. Your child may not be as sensitive to the frequencies of the sounds at the Family Fun Center, but may be hypersensitive to the frequencies of the music and singing at church. Even to a "neurotypical" ear, the sounds at a fun center versus music in church sound very different.
I also can verify this from personal experience. As of this writing [September 2007], I am not bothered by dissonant noise no matter how loud it is. Yet I am bothered by hand clapping, and sudden, shrill sounds like fire alarms during fire drills, gunshots in plays, and dogs barking. It made much more sense to me as to why that is when I realized that the frequencies differed with each sound, saw how they differed via Windows Media Player, and then saw that the dissonant noise was on frequencies that didn't bother me but the shrill blasts were on frequencies that did. Frequencies are very powerful and can make something sound much more louder even if it has an equal volume with a sound on a different frequency. It's like the difference between a passing train and an opera singer--both may be equally loud but one is noisy and the other is pleasant to hear.
Surprise is also a big factor for me. Currently I can adjust to dissonant noise since it's constant, I know where it is and it typically has a constant "base volume," or volume that it never goes below. Yet a sudden shrill blast shocks me, startles me, and bothers me because I don't know when it is coming and my ears cannot prepare as well. Perhaps there are surprise blasts of sound in the music or singing that are bothering your child yet there are not surprises in the dissonant noise, and the surprise bothers him. Or there are surprise blasts of sound that he can hear in the music or singing yet you as well as the others at church cannot. Another possibility is that you do hear them, but they do not bother you. Remember, autistic people sometimes hear things far louder than neurotypical people as a part of their auditory sensitivities (though not always).
What do you do? Teach the child to wear earplugs in church. Perhaps it will help him so that the sounds don't "cut through his head like a knife," to quote an autistic individual about sensitive hearing. Or find a place far enough from the noise where he can sit in church so it doesn't bother him if he can tolerate sitting alone.
For more information, you may be interested in reading the transcript of my presentation titled "Auditory Training: My Personal Experience and Thoughts," which can be found on my website, "www.jamesmw.com." In this lecture, I summarize the science behind sound sensitivities. You also might be interested in reading up on literature about Auditory Integration Training. Much of this literature discusses the causes of sensitive hearing, as well as the therapy Auditory Training, which is sometimes used to help autistic and non-autistic individuals with sensitive hearing.
More questions will be published later as they are asked.