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.
Mr.
X
Dear
Mr. X,
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?
Sincerely, James
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?
Thank
you,
Mrs.
X
Dear
Mrs. X,
Here
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.
If
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.
Sincerely, James
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?
Mrs. X
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
convention.
Sincerely, James
6. James,
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
he wants.
Sincerely, James
7.
James,
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.
Sincerely,
James
8. Hi,
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?
Peace,
Kathy X.
Dear
Kathy,
Yes
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?
While
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.