Highlights from
the Q+A Blog
Since the creation of my website, I have maintained a
separate blog-style website for individuals to post any questions or comments
regarding any material I have written, or about autism in general, or to state
their own views. I do accept differing views, and try to keep an open mind as
much as possible. Here are some archived quotes from the Q+A blog so others can
learn from responses from people’s questions. The Q+A blog still will exist,
but for those who for whatever reason cannot or do not wish to access the blog,
they may read the archives here.
To protect the identities of the bloggers, all of their
names have been abbreviated, merely showing the first letter of their first
name and last name if they identified their last name.
L.C. Says:
I have a 3 year old boy; his name is Nelson and has autism. His teacher told me that my boy has been defiant from following routines at school especially during snack time. She said that Nelson refuses to sit properly when eating and that there are times that the entire session is spent just making him sit on his chair. Of course such sessions end with Nelson screaming, battling against his teacher and the aide. My question is, do routines, if they have been structured, have to be strictly followed? I have a feeling that Nelson does not understand why he is asked to sit to eat his snacks. We have observed him though that he sits when he eats whenever he is really motivated to eat – and that is when he is hungry. He was also reported crying and screaming at another session because he was asked to count 1-2-3. The teacher said she was happy that Nelson was able to utter “1-2-3″ at the end of the session but was continually crying and sobbing. Does learning speech happen among autistics this way?
James
Williams Says:
Here is my
response, based on the situation you have presented to me:
First,
remember than even though I may give advice that may work for your child with
autism, that does not mean you will be able to convince the teachers at your
school to implement any suggestions. While there are many open-minded educators
out there, many teachers still have their minds closed to ideas that are widely
accepted by autism researchers as the proper way of helping autistic children.
Autism authority Dr. Brenda Smith Myles calls this the “research-practice gap,”
and argues that a main problem in the field of autism is that even though she
may write a paper about what needs to be done to help children with autism in
schools, that doesn’t mean teachers will read it or practice what her and
others’ research has concluded.
Why is
Nelson refusing to sit properly when eating and screams when made to sit on his
chair? There are many possibilities, but the simplest explanation would be that
something on that chair is bothering him due to tactile sensitivities. We may
not see it, and the chair might seem empty to us, but it likely bothers him.
However, since the discussion involves “sitting properly,” that implies that he
is sitting improperly. This could be because of a sensory problem. By “sitting
improperly,” he is able to sit in the chair that does not bother him because of
his sensory problems. By sitting properly, he feels immediate pain because of a
sensation he feels sitting in his chair.
A second
possibility lies in back problems. If he cannot sit properly, that may be because
sitting properly is hurting his back, and he is trying to alleviate himself of
the pain, either because he cannot sit straight, or because of how his body is
constructed. This was a problem that I had when younger–it was downright
painful to sit up.
Very few
people will inflict pain on themselves if it truly hurt them. This is not
autistic–this is something no person would do, and very few animals would do
out of their own volition as well. Masochists who inflict pain on themselves
typically do so because even if they feel hurt, they don’t perceive it as pain.
Imagine
sitting on a chair with a series of improperly placed nails that stick out from
its back. You would not want to rest your back on the part of the chair that
had nails on it. To him, sitting properly in that chair would be similar to
someone forcing a neurotypical person to sit in a chair of nails. I believe
this is important to understand because many behaviors and/or symptoms of
autism often have “neurotypical equivalents,” a term I would use to define a
related situation that would cause a neurotypical person to react the same way.
In my
opinion, the solution here would be to not to make a big deal about it. One
must pick their battles with autistic children. A problem, after all, is only a
problem when someone makes it a problem. It’s the fault of the school here for
making a big deal over whether or not.
The
teacher and the aide needs to lighten up. Nelson is only three years old, after
all. There are far more important things they should be worrying about, like
socializing. The ideal solution is just to stop forcing him to sit properly. If
that is beyond the mindset of the staff in his classroom, however, then you
might want to consider putting a cushion or pillow on the seat or back of his
chair to see if the problem really is sensory-related to something on the
chair, or something he can sit on. If other children in his class ask why he
has that, just explain that he has special needs or is disabled.
You
asked if routines, if they have been structured, have to be strictly followed.
No, they don’t, but schools often stress that they do. This is because of a
widely held theory that autistic people must have structure in order to feel
secure in their lives. This is part of the official diagnostic criteria used to
diagnose autism (in the DSM-IV), and is believed by many autism authorities and
even argued by people with autism themselves.
I,
however, take a different view toward the “structure theory.” I will not deny
that there are many autistic people who are looking for structure out there.
However, I believe that this does not tell the whole story, and does not
explain the situation that occurs in all cases of autism. Consider–school, as
you have noted, if by far one of the most rigid, structured institutions in the
world. Yet school causes some of the most misery in the life of the autistic
child. This in itself has led me to argue that structure in itself isn’t what
people with autism are looking for. Otherwise, school would be a great place
for people with autism.
My
opinion is that structure is not what autistic people are looking for, it’s the
security that the structure brings. But the structure of school often brings
misery and pain that, because of the “structure,” the autistic child cannot get
out of. Thus, structure in school should not be strictly followed, and it
doesn’t have to be–that’s just what the school administrators believe has to
happen. If a given structure isn’t working, it should be changed–with an
alternative structure. Autistic people do indeed need structure, but because of
the security it provides, not because it is structure. Should all of structure
cause misery to an autistic person, they might want or actually thrive in a
non-structured environment. That is the experience I have had as I have in many
situations when the alternative–structure–inflicted suffering or discomfort for
me, or offered something I did not want at the time.
Food as
a motivator to enable sitting is not autistic–that’s an instinct in most
humans. All of us need to eat, after all. If the chose was starvation versus
pain while sitting, most of us would sit through the pain if we were starving
tod eath. It is, however, something that should raise eyebrows as this is not
always the case with autistic children. The fact that he is willing to eat
versus be hungry is impressive–some autistic children will starve if they can’t
eat in the way they want to. When I was five years old, I was such a picky
eater that I routinely starved myself if I was not served the few foods I
liked, and didn’t drink a drop of water until I was seven. How I survived
without dying due to malnutrition, dehydration, or starvation is a miracle in
itself.
On
learning speech among autistics…
Learning
speech does happen among autistic individuals with sobbing and crying.
Typically, it’s because they’re not ready yet they have to learn in order to
meet the expectations of their school classroom. Because of school’s rigid
expectations and the power society gives it to force learning against a child’s
will, problems that are not apparent in children before they attend school
often appear once they enter school, even in kindergarten (which is now
considered by many teachers and many schools to be an academic grade, and is
often taught like one). In my biography, it is said that I volunteered at a
child care center. Later I became an intern in a kindergarten classroom. Almost
half of the students I worked with in that classroom were students I already
knew from the child care center. What I saw as the year progressed was how some
of the students, having seemed normal at the child care center, became “problem
children” in the classroom, and had extreme difficulty meeting the social and
academic needs of the kindergarten classroom. Some of them even qualified for
special services after their problems became so apparent in the classroom.
Another
possibility is because of auditory sensitivity–Nelson may just be bothered and
feels pain when he hears even his own voice, and does not like hearing himself
speak. This is likely because, as you noted, he is able to count despite
sobbing through it. For this, I recommend therapies like Auditory Integration
Training or other listening therapies to help him with his auditory problems. A
cheaper approach would be to teach him how to wear earplugs or to get the
teachers, if possible, to allow him to wear headphones that are designed to
reduce the sound inputs in half during the school day. If you are sound
sensitive and hear things much louder than others, that reduction in half may
actually enable you to have the hearing of a regular person, so you should not
be concerned unless he actually exhibits an inability to hear others that he
may not hear things that are important for him to hear.
Finally,
remember that what I have said may not necessarily apply to your child,
entirely or in the way I have said it. Autism is so variable that nothing–no
explanation, no solution, etc.–can be taken as an absolute that will help all
children with autism. Remember this quote that is often repeated by many autism
authorities–”He who has seen one autistic person has seen just that–one
autistic person.”
L Says:
well
done, man
S Says:
james, i
have a question for you.
My son was diagnosed with a mild form of autism, and as many autistic children
do, the throw tantrums when you tell them no, however my son likes to hit or
scratch me or my wife when we tell him no followed by a tantrum, our son is 3
but very strong, but we are afraid as he gets bigger he may hurt someone, what
is your suggestion in trying to redirect this behavior? Another question, i
liked your speeches, when is the next time you will be speaking in
-sean hart
James Williams
Says:
S,
There’s
no denying tantrums are difficult. I myself at that age threw many tantrums
myself, and would refuse to socialize with most people.
One
thing, however, that needs to be reminded is that unlike typical children, most
tantrums that occur with an autistic person are not based on being a “spoiled”
brat or merely trying to get attention. Also, many times, when they say “no” to
you or have a tantrum, they’re refusing to do something that typically hurts
them or causes them phyiscal distress, or they just don’t understand why they
have to do it (and not understanding why you have to do something is sometimes
very stressful for autistic people).
The
solution toward resolving tantrums is to try your best, when the next tantrum
comes, to try to figure out what happened beforehand to cause the tantrum.
Typically tantrums don’t come out of the blue with autistic children–they only
seem to be that way if you don’t know what caused them in the first place.
Hitting and scratching occurs often because the child, desperate to get what he
needs or to get out of something miserable, hopes that by engaging in such
violent activities he’ll get out of what’s bothering him, or he’ll be able to
communicate to you something he needs to communicate.
What is
your child’s verbal ability? Can he talk normally, or is he nonverbal? If he is
nonverbal, then he may be engaging in tantrums because that’s one of the sole
ways he’s able to communicate his needs. When you cannot talk, after all, or
have impaired speech, you have to rely on other ways of communicating to get
what you need. Sometimes that communication also involves engaging in violent
acts.
What is
your child’s ability on understanding language? Sometimes a person can be
nonverbal yet still understand other people’s language. If he can understand
what you are saying, and/or can talk, try to talk to him. Explain to him that
even though he may be sad and can cry and pout all he wants, it is not right
for him to hit and scratch you, because it hurts.
However,
if he cannot understand what you are saying, then you need to go about it
differently. Since he’s likely not going to be able to stop hitting you, your
best bet is to try to see what is compelling him to hit you and scratch you,
and to find out what is upsetting him. That way you can try your best to
eliminate as many possible situations that upset him as possible. This is not
an easy task at times, I must admit, and there are times when he’s going to
have to do things that upset him. In that case, you might just want to put on
protective gear. I have seen autistic kids who have gloves on or sportswear
typically worn by athletes to protect them and others from their violent acts.
Sometimes kids wear helmets. If he truly cannot be controlled, and he’s hurting
you, by forcing him to put on gloves, mitts, or hand protectors, you can ease
the discomfort you might be feeling when he hits and scratches.
Those
are my suggestions. They may not work, but this is what I have to say. You can
write back with more information if you want to.
As for
speaking in
1. Find a
local agency or place where you can hold the lecture, such as a school, church,
or library. You could also hold it in a person’s house if necessary.
2.
E-mail me the location, time, and date you want me to lecture. Then, pay my
speaking fee and travel expenses. I charge $100 for speaking, plus I ask that
my travel expenses are reimbursed (travel, hotel). However, I do not ask, or
take food reimbursements.
3. I
will need to get to whatever location via a nearby train or bus stop, and to be
picked up and taken to and from the speaking location from the bus stop, and
then to the hotel. If, however, public transportation is available in the area,
I will take that on my own.
4. I may
need to stay overnight if I travel to
That is
how I can be requested or return to
P Says:
Somehow
i missed the point. Probably lost in translation 
Anyway … nice blog to visit.
cheers,
Preform.
M Says:
Hi I
just read your ten commandments. No questions, just a thank you.
Cheers
H Says:
Hi,
I am advocating for a college student who has submitted a request of 504
accommodations at the university. How do I describe a “meltdown” is not just an
act of violence and destruction. My client has meltdowns that are soley a
withdrawal, crying, depression event not a violent event.
Thanks
James Williams Says:
H,
I wrote
a reply for your response, yet for some reason my blog didn’t post it. I
apologize for the delay.
I have
an essay I have written discussing the nature of meltdowns, in my opinion, at
this URL: http://www.jamesmw.com/meltdown.htm
Titled
“A Neurotypical Meltdown,” this essay covers the nature of meltdowns by example–of
a girl who is not autistic, yet melted down went put in a stressful situation.
James
B Says:
Hi
James,
I am so
grateful to have come across your website! For the past 6 months I have been in
a relationship with a boy who has autism and since we’ve been dating it has
been wonderful, but extremely difficult. We are both in college (he’s 19 and
I’m one year older) and to better understand him, I have gone online and found
a plethora of information about autism. It has helped me understand him tremendously.
It also helps that we’ve known each other since we were in grade school, so
I’ve always known about his autism.
However, I’ve come up empty handed when trying to find information specificly
on relationships between non-autistic and autistic people.
So I
have a few questions for you which I hope you may have an answer to:
For the first few months of the relationship, I saw him only at night, and
probably at most 3 times a week. He was always full of energy and completely
loving – hugging, kissing, and he has no problem with physical affection.
Now it has lessened. Since it is winter vacation and we are home from college,
we have seen each other almost every day (and night) and suddenly, I feel like
he’s always tired and wanting to take naps. The physical affection has
lessened. Sometimes he will just talk in monotone for an hour and not touch me
at all, making it seem as if he weren’t interested in me… and then the next
moment he’ll surprise me by wanting to hug or hold hands. Is this a sign of becoming
“comfortable” with our relationship, or does this mean it’s falling apart?
I also heard that people with autism have less energy than other people, and
therefore simple social interactions, like being around your girlfriend all day
and all night, can take a toll on their emotions. Is that why he is becomes
stone-like and cold after I’ve spent all day with him?
He’s
completely honest with me, which I love, but sometimes it’s still hard for me
to believe him when he says “Of course I’m still happy in this relationship”,
because I don’t see the happiness in his face! So I always feel as if something
is wrong and he constantly has to remind me that he’s fine.
Frankly, it has been very difficult because I don’t know how to act around him
sometimes. Should i just give him space? I still believe that he cares about
me, but he rarely shows it anymore, and when he wants to hang out, he asks me
in a formal manner as if I were a mere aquaintance.
We have quite a lot in common, but at the same time, we are very different
emotionally. And sometimes it’s downright frustrating.
Do you
have any advice? I really do love him, but I don’t know how to show it. And I
don’t know how people with autism express love, or how to reciprocate.
I
apologize for the long comment. I just haven’t found any other websites that
would help me better understand him… and I don’t want to change him. I just
want to know what is going on in his mind, which would then ease my
frustration.
Thanks so much!
James Williams Says:
B,
I apologize
for not writing back for so long. I have been extremely busy this past month,
and I also have had some social dilemmas occur as well. Then there has been
non-stop nights workign in a theater, as well as semester finals. I apologize
for not writing back until now, when I am free.
Dating
is sometimes a very difficult thing for autistic people to do. Many autistic
people never even understand what it means to date. Some believe that you’re
dating just when you hang out with a person of the opposite sex–even though
many times, you’re actually just friends. Autistic individual
Then
there are autistic people who understand what dating is, but don’t have the
emotional feelings to date. Autism sometimes blocks the ability to love or have
interest in dating. They sometimes, as a result, are “asexual”–meaning they
have no interest in dating or sex. Or they may be interest in dating, but no
interest in having sex.
You have
mentioned that this problem started when you saw him every day. Starting to see
someone daily can have that impact on someone. Sometimes people with autism
have less energy to socialize, as you mentioned. Other times, however, they
need their space, and it is difficult for them to hang out with someone daily.
Maybe he could give physical affection when it was 3 times a week, but he’s not
able to daily. He could need his space. I know that sometimes I hang out with
my friends a lot, and they sometimes need their space.
The fact
that he says he’s still happy in this relationship and that he’s fine means you
probably shouldn’t worry. Even though there’s an old saying “A girl who says
she’s fine is not,” most autistic people are truthful. When an autistic male
says he’s fine, he probably is. Try giving him space, and be open about it. Ask
him if he needs his space, and see what he says. See what happens. If you two
want to keep this relationship, then try your best to communicate with each
other. I can tell from your comment that the relationship is mutual.
As for
being formal, acting formal is a way autistic people sometimes act
instinctively. Because socializing is often difficult for autistic people,
acting formal is often a way autistic people act when they don’t know what to
behave. They think that by being formal, they know they will not socially mess
up. He’ll probably become less formal when he is more relaxed.
Well,
those are my ideas. I hope your relationship works out well.
Z Says:
Hi
James, My 8 year old daughter, who is not autistic, has been best friends with
an autistic girl, who is 13, for a year 1/2. They played together every day all
day for over a year. She was always at our house and she wanted to play ALL THE
TIME. My daughter would always have to go get her though because she never
would come to our door or initiate contact. It just got to be accepted and my
daughter would go get her every day. I mean they were inseperable! Then she
turned 13 and almost since that day she has shown very little interest in my
daughter. Obviously this hurts to the extent that my daughter now hesitates to
ask her to play because she is tired of being turned down. Now they never play
and I don’t really know how to handle it. Should we just leave her alone? Not
ask anymore? And can you please help us to understand why she all of the sudden
has rejected my daughter. It just happened out of the blue really. Just a bit
of info- my daughter’s friend really has no other friends and we all valued
this friendship and tried to nurture it. All parents were very happy with their
friendship and it just seems like she is dissing us….????? Please help me
understand.
James Williams
says:
Z,
First
off, I would like to congratulate your willingness and the willingness of the
other family to try to make this friendship work. Friendships between people
with autism and without autism where a significant age difference occurs are
the best friendships for an autistic person, as mentally, autistic. That 13
year old girl with autism probably was mentally around 8, and that’s what made
the friendship work.
It is
probably not the fault of your daughter that the girl with autism does not want
to be friends anymore. Rather, it is because when autistic individuals become
teenagers, their entire personalities and symptoms often change, and they often
withdraw. This could be for the following reasons, and to explain these
reasons, I must discuss issues that culturally, we view to be taboo and
inappropriate to discuss. Please bear with me, as I have had to work with
autistic girls suffering from these issues during my career in autism, and I
therefore will bring them up for educational purposes.
It may
be because the girl with autism is now entering puberty, and that puberty is a
rough time for autistic people. It is a massive trauma in their lives, and
autistic people often find that their autistic symptoms often worsen, or
re-emerge at puberty. This often affects girls much more than boys with autism
since female puberty is often harder to deal with than male puberty, not only
because of the physical differences but also because of our culture’s belief
that female subjects are taboo, a belief that many autistic individuals belief
to be socially unjust. For example, I have worked with, and been friends with,
many autistic girls in my career who have told me that when they get their
period every month, they feel a sickness so debilitating that they are unable
to function or get out of bed, and cannot go to school or do anything until
their period is over. One summer, when I worked at an autism camp, there was a
girl who transformed from being quite calm and mellow, who then became
extremely angry, aggressive, and violent the next day after getting her period
that night. Interestingly, her suffering was during her period, not before,
such as would be with PMS. Menstruation affects girls with autism in many other
ways as well–autistic girls of all ages have shared with me their struggles of
managing menstrual hygiene due to organizational issues and remembering when to
use menstrual supplies, and even coping with unpredictable, irregular cycles
that sometimes occur for adolescent girls. (When higher functioning individuals
with autism get together, there is no menstrual taboo and menstruation is often
spoken freely among higher functioning teens and young adults with autism of
both genders if they feel comfortable doing so. Many females with autism expect
me to listen to them about their issues, and those who are not do not have to
share, but are still expected to allow those who are comfortable to share and
not shut them up. It works because most males with autism do not share the same
discomforts about those issues and support the girls when they wish to speak.)
Another
trauma that occurs for girls during puberty is our social mandate that girls
have to shave their legs and underarms. Although we hear a good deal in autism
research about the trauma that boys go through when shaving their faces, this
shaving is optional, culturally, whereas shaving legs and underarms for girls
is not. Many girls have told me that leg shaving is a major sensory overload
for them and/or they lack the motor skills to properly shave their legs. One of
my good female autistic friends once pulled up the legs of her pants to reveal
to me deep, open, gaping wounds on her legs. It looked as if she had tried to
cut herself for a suicide attempt, but she told me, “This is the price I pay to
fit in.” What she meant was that as a girl, she had to shave her legs, but she
did not have the proper skills to do so, and that those massive cuts were
shaving cuts due to her inability to properly shave without cutting herself. To
this day, although she has learned how not to cut herself as much, there are
permanent scars where those massive cuts were.
Then
there is just the possibility that the mere changes of puberty are occurring,
yet the girl is not mentally ready to face those changes. The fact that she was
friends with your 8-year-old daughter shows that she probably is mentally much
younger than she is, yet her body is still developing. Many autistic people,
not able to face those changes, and still coping with the same mental and
hormonal changes that other adolescents are going through, often withdraw
socially, not being able to deal with social issues while physical changes are
going on. Research has discovered, in fact, that autism messes up hormonal levels,
thus the changes that occur during puberty often are exaggerated by
autism-induced hormonal imbalances, making the entire body go haywire. I
withdrew from other kids when puberty hit and had no friends at that age either
due to the trauma that puberty entailed, and it’s not uncommon for autistic
people of both genders to withdraw during that time of life. Adolescence not
only causes physical changes, but it also causes an increase in social
complexity that many autistic individuals cannot handle that have been
popularized in movies like Mean Girls and She’s All That. Girls’ social circles
become extremely complex and autistic girls find themselves the odd one out of
a clique–often making them feel like they get along with boys who they view as
more accepting and less socially complex. One girl I know who is 13 has no
female friends her own age–her friends are all younger girls ages 8-10. Another
girl I know who is now 16 has no female friends, and all of her friends are her
own age, but boys. Her BFF is a same-aged autistic boy.
At the
same time, it could not be puberty related–many autistic individuals go through
different shifts of wanting friends, and then not wanting friends. I have been
through phases when I did not want friends. We have to stop thinking that
autistic people want friends, and realize that many autistic people want to be
alone, and we should allow them to do so. We don’t make neurotypical people
befriend people they don’t want to be with, and no neurotypical person would
hang out with other people they wouldn’t want to be with, so why do we make
autistic people do the same?
Obviously,
you do not have to ask her parents about these issues if you’re not comfortable
asking, but here are some possibilities for why this has occurred. Regardless
of how taboo these subjects are, they form a major part of a 13-year-old
autistic person’s life.
· U Says:
I have Asperger’s
and have a question for you. It looks like you travel a lot. How do you deal
with it. It is so tiring, there are more people so more of a chance of being
touched, more noise, lights, and everything else. Not to mention that if you
can’t eat airport food you have to drag along your own. I can’t drive because
of epilepsy.
U
· James Williams Says:
Yes, I do travel
a lot.
How do I deal with it? Well, I
prepare myself beforehand about the place I’m going to go. I study the streets
of the area and the route I will take to get there. I do not drive due to
narcolepsy (sleep problems), but I study the maps of the bus and train systems
in the areas I travel to.
As for noise, if a certain area
gets too loud, I wear earplugs. I carry a lot of stuff with me so I am not
likely to be touched. I also keep a certain distance from people. However, I
like to be social and often will meet people when I travel. I do this by
locating people I feel are safe (by their appearance) so that if I am going to
meet them, I will not get hurt.
As a person with food allergies,
I know pretty much what I can and what I cannot eat. Thus, I do not bring food
but know my limitations and stick to them. I travel because I must do that to
spread my messages about autism awareness around this country.
13 Comments:
At 4:34 PM, James Williams said…
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At 4:46 PM, Anonymous said…
James,
I have your website on my favorites list. I have read and re-read every
article. My son has not been “officially” diagnosed, but he has many symptoms
that you describe. He is 11 years old. I have homeschooled him since the 3rd
grade. You give me hope for my very special son. Thank you
R
At 5:33 PM, james williams said…
Thank you for your comment.
It’s true that many children who
exhibit autistic symptoms are often not diagnosed. Many of these children are
terribly misunderstood, and they grow up to be depressed adults.
It’s also true that many symptoms
of autism also are symptoms of different, but related disorders. Mental
retardation, Down’s syndrome, bipoldar disorder, ADD, PDD, and other disorders
all share symptoms with autism. This is why it is sometimes difficult to
diagnose autism.
Your son may not have autism, but
he likely suffers from issues that many autistic people share.
You are wise to homeschool.
Homeschooling is the best thing for a child with autism, in my opinion.
My advice to you is this–know
when to quit. If something is not working with your child, don’t keep trying.
Stop and try to understand why that thing did not work. Don’t think that
somehow you have to force your child to do something unless it is absolutely
necessary. Some things are–like eating and sleeping–but others–like joining the
Boy Scouts–are not.
What worked for me might work for
you, or it might not. But be creative, and remember that what helped me might
not help you. My ultimate message is that while many things helped me, that it
is up to you to be able to understand what is best for your child–and to show
parents how to acquire that understanding.
At 10:58 AM, Anonymous said…
A young man I support with AS explains that he cannot get thoughts of remorse
out of his eat but that they eat away at him.
After he’s done something ‘bad’ (and he truly has quite an array of these
behaviors) he feels incredibly guilty and these thoughts pervade his
consciousness indefinitely thereby paralyzing him from moving forward.
Any ideas?
At 9:54 PM, james williams said…
I understand this quite well. I have dealt with and sometimes deal today with
this very issue. I will do something bad and then feel horrible about it.
Autistic individuals are not
evil. Many of them are not trying to do bad. Yet no matter how hard they try,
they somehow seem to be doing many things wrong. Once they learn the error of
their ways, they wonder why it is they were unable to stop themselves from
doing wrong, and why they are such a bad person.
The issue I see here is that this
is one where the people around him (like you) need to think about how they
treat him when he does something bad. Are you severely hard on him? Do you
expect him to passively accept your rage when you ask him why he was so stupid
because he made a mistake? Is anyone else acting like this? When he does
something bad, are people trying to help him solve the problem, or are they
punishing him and telling how much a bad person he is?
The way he feels about himself is
related to how people treat him. For this reason, he needs people to help him
deal with these thoughts of remorse. They may not go away (I still have them as
well), but at least you can try to help him get through the guilt that he has
of not pleasing you or anyone else. Then you can try not to be too hard on him
when he makes another mistake.
Let him get involved in what is
necessary to fix whatever he is doing. One of the many ways autistic
individuals try to redeem themselves is by trying to get themselves involved in
what is necessary to solve the situation.
Many autistic individuals also
have a need to “state their case,” or explain to you why they did what they did
before they accept punishment. This is not a behavior of a brat. They are not
trying to get out of a punishment either. They just want you to know why they
did wrong before you punish them, and are not expecting you to change your
punishment either. They want you to remember that they are not misbehaving on
purpose. Listen to them, and let them talk. They’ll be more willing to accept
your punishment if you do, and they are not acting spoiled.
But always remember that these
issues are the result of his autism. They are not the result of just “being a
child” or because he is a “rebellious teenager.” He has deficits and
disabilities that are causing these issues.
My grandmother frequently told me
that “making mistakes” is a part of childhood; thus, why are you feeling guilty
for them? This is wrong because it ignores the other aspect of the issuse,
which basically is that the mistakes made are different. Yes, making mistakes
is a part of childhood, but slapping a teacher on the face because a bully
tells you to is no “mistake of childhood.” Rather, it’s a response to the fact
that the autistic child wants social interaction and the only people willing to
socialize with him are bullies.
At 1:53 PM, Anonymous said…
James,
My 7 year old son has spent most
of his time off from school this summer screaming. He is not angry, hurt or in
any danger. He seems quite happy while he is doing it, but this is beginning to
drive us a little over the edge. I think he picked this up from watching the
“Home Alone” movies and was wondering if you had any insight into how we may
get him to stop doing this? I realize he may have a deeper sensory issue, but
he cannot continue to do this. Thanks C
At 1:57 PM, james williams said…
C,
Screaming in autistic children is
a complex issue. Many autistic children have screaming fits but few do so for
the same reason. There are many general possibilities, but go far enough and
the reason you find is specific to each child.
Because there are numerous
possibilities, I am going to give you suggestions as to why he might be
screaming based on the information you give me. Then I am going to give you
signs to look for which you can use to conclude possible reasons for why he is
screaming. The signs are often there–we just need to know how to read them.
What is the probability that the
child’s screaming is due to the “Home Alone” movies? Quite possibly. But there
are also numerous other possible reasons as well, and they are just as
plausible because we don’t know the actual cause. Here are a few:
Is the child verbal or able to
communicate? This is a big factor, as issues of communication are often
involved in screaming. If your child is nonverbal, then he might be trying to
communicate something to you and can’t except by screaming, no matter where he
is and what he is trying to communicate. This goes for happy times as well as
when he is upset.
In this case, you need to analyze
stimuli in his environment that he is responding to. This is sometimes easier
than other times. If the smoke detector goes off and he starts screaming, then
you have your answer–the smoke detector hurt his ears.
You might ask that if he is
screaming, how could he have sensitive hearing but in fact, both are related.
Sensitive hearing does not always equate to ABSOLUTE sensitive hearing, it
means sensitive hearing to some things and not others. His screaming not only
communicates pain but it also could be a way of blocking out sounds that bother
him to a “safe” sound–his screaming. This could be another reason for his
screaming–he’s trying to block out sounds that bothers him. (Is he holding his
ears with his hands while he screams? That’s a sure sign on sound sensitivity.)
The same applies with other
sensitivities. If he’s holding his nose, he can’t stand the smell of a specific
area. If he’s closing his eyes, he can’t stand the sight of a specific area.
For this reason, when he does
scream, analyze the surroundings. Is there some loud noise going on? What does
the place smell like? What’s in the room where he screams?
If you can find a pattern, then
you might find the answer. If there’s a dusty smell in the rooms where he
screams, then you might consider cleaning the room or dusting it and getting him
involved (even if he is watching) in the cleanup. If you or your husband smoke
and he can’t stand the smell of cigarettes, you might want to consider smoking
when you are away with the child, or taking turns smoking when you must smoke
(you are with the child when your husband smokes and vice-versa). If all the
rooms he screams in have windows in them, then perhaps he can hear sounds
outside that bother him, and you might want to train him to wear earplugs.
Wearing earplugs is an adaptation, not an act of being spoiled, and if it helps
you function in our world, you should use them. The argument that earplugs
worsen sound sensitivities may be true, but if a child CANNOT function, then
your concern in getting your child to be able to function, because that is more
important than his sensitive hearing.
There could be other
possibilities. My point is: You have to see if there is a pattern to the
screaming! If the screaming is random, however, then the cause is likely
elsewhere.
What if your child is verbal and
can communicate? Try to talk to him. Ask him if the “Home Alone” movies are the
reason behind his screaming. I, too, was once obsessed with those movies, but
never screamed because of them. But it could very well be the case with your
child.
Ask him if the cause is due to a
sensory issue. You might also try to ask him if it is due to an inability to
communicate something else. Perhaps he fears he will yell at you if he tells
you “x” but still wants to tell you “x” so he screams instead.
Also remember: there are two
meanings to the words “danger, hurt, and angry.” One is the factual
meaning–danger implies risk of being hurt, hurt means you are in physical
distress, and anger is a recognizable feeling. But they are also subjective.
Being in danger does not equate feeling danger–just ask a daredevil. Being hurt
does not equate feeling hurt–just ask a masochist. But there’s another lesson
here–caution and fear do not emerge in the face of danger, but when danger is
felt. You can be in danger but you will not react unless you feel or percieve
that danger, as has happened with an autistic adult whose daughter drowned and
died because she did not feel there was any danger. And he might be very angry
but is afraid to express it, and hides it. Thus, because we do not see pain,
anger, or danger does not mean that he feels it or perceives it, the same way a
neurotypical child fears the dark because of perceived danger even when they
are not. He might be screaming because he feels danger, or is angry, and is
hurt, but knows no other way to communicate. This is where you can take
precautionary action–keep telling him to tell you if he is angry, or hurt, or
in danger, or if he cannot tell you his anger (as sometimes happens to autistic
people when they become teenagers) to teach him how to keep it to himself. Or
if he is verbal, you can ask him if he is angry or in pain to see if he can
tell you the answer.
Have I answered your question? If
not, you may always write back to me with more specific details on your case,
and I will reply again.
At 7:43 AM, M.H. said…
Dear James: My daugher and I were in the audience at Willow River Elementary in
@h:There are things you can learn from an 18-year-old
@t:When I attended a presentation last week entitled “In Search of the Proper
Autistic Friend,” I wasn’t quite sure what to expect. But then, that is usually
the case when it comes to my experience with autism and with the children and
families who live with it.
James Williams was no exception. He has written several books and speaks across
the country about living with autism, and he is just 18 years old.
Tara Tuchel, a
Williams spoke for more than an hour about his experience playing with children
in a fitness center daycare. By volunteering at the facility, he had the
opportunity to observe up close how “normal” children play with one another and
how some of this normal play behavior can pose a problem for the child with
autism.
His presentation captivated his audience, which included a lot of adults who
nodded their heads as he spoke — indicating to me that they probably had
firsthand experience with what Williams was saying, either as parents or
teachers of autistic kids.
Williams had the straightforward, no frills, often humorous approach to
speaking that drew his audience in and gave everything he said a special
authenticity. I’ve had this experience before with several of the younger
autistic children I’ve met over the years doing stories about them. The thing
is, they always tell the truth or, at the very least, the truth as they see it
— whether it’s coming from this 18-year-old author and public speaker or from
the 10-year-old who, after we were introduced, questioned whether I was really
a “girl.”
“If you’re a girl, how come you have hair on your chin?” It was the truth, and I
could see how that might throw her. It still throws me.
Williams not only spoke about what he experienced and observed while at play
with the children, he demonstrated it. He got down on his stomach to do the
crocodile game. He treated us to his dinosaur impression and a musical
selection from “High School Musical” on his recorder. And he re-enacted the
secret greeting between a group of young girls which started with everyone
saying “I hate you” and ended in a group hug.
“Now you can imagine how confusing something like that would be to a kid with
autism. These are your friends, but you say you hate them and then hug?” It was
just one of many observations he guided his audience through to help us
experience what kids with autism do every day.
He also spoke directly about how his own behavior at the daycare made some
adults suspicious enough to have him removed from his job. Why was an
18-year-old man volunteering to play with young children? Why would he actually
play and not just supervise and why did he ask so many questions? He was
ultimately reinstated when the majority of parents whose children he played
with rose to his defense, but he relayed the whole experience with an
understanding of both sides of the issue.
But if Williams’ formal presentation was good, the question-and-answer period
that followed was even better. The majority of questions came from parents
asking very specific questions about the behaviors and feelings of their
autistic kids. One mother said her son had no friends, but it was difficult for
other kids since he was obsessed with only one thing — electronics. How could
she get him off his obsession? Williams’ response was quick and simple. You
don’t.
“Let him go with it until it burns out or find a kid who is obsessed as he is.
They’re out there. Or you could do what my mother did — paid kids $5 an hour to
play with me. It worked.”
To another concerned parent, Williams recommended a book that spoke directly to
teens with autism about how to handle their feelings about the opposite sex and
about appropriate behavior. He went onto cite specific studies on autism and
the work of several researchers as resources for the audience.
Another parent wanted to know how he got along with his two younger sisters.
Again his response was candid. His relationship with his elementary-age sister
was good, and they understood one another. But his older sister is a different
story, one he explained with some painful truth.
“She hates me but I know why. When we were younger, she was teased a lot
because of the way I am and I embarrassed her by things I did. I understand why
she feels the way she does. We kind of have an agreement. I live my life and
she lives hers.”
He was asked how to deal with the question of Santa Claus with an older child,
and he politely declined to answer, citing the need to be discreet around the
younger children in the audience who may still believe. Smart and sensitive.
My daughter and I left Lee auditorium that night feeling like we had just
experienced something very special and unique. Eighteen herself, she said she
didn’t know anyone her age who had his insight. Even with 36 years more under
my belt, I knew exactly what she meant.
It was a lucky thing to have James Williams here, to have him anywhere. God
does work in mysterious ways.
For more information about James Williams, go to his Web site at
www.jamesmw.com
Sincerely M.H.
Hudson Star Observer
At 5:44 PM, james williams said…
Meg, thank you for your column!
At 6:03 PM, james williams said…
However, there are two inaccurate comments you made on your column:
1. I was not “reinstated” at the
YMCA. While I did receive a lot of support from the parents at the YMCA, I was
not allowed to return back. This summer I was accepted as a stagehand in a
summer broadway camp for kids with and without autism. Then I was accepted at
an internship program at the local high school this fall where I work as a
student intern in a kindergarten classroom, and I furthered my work by
enrolling as a preschool teacher’s assistant at the lab preschool offered by
the high school. Many of the students at the preschool and kindergarten room
know me from the YMCA, and the parents are happy to see me further my child
care work.
2. Even though Tara presented, I
did not present in
At 9:17 PM, T.P. said…
I just stumbled over your website, and I’m so thankful I found it – it will be
saved under my favorites!!! My 3 year old son was just diagnosed with Autism.
He is so border line that all the professionals are just guessing right now. I
have 2 older sons that I’ve homeschooled since birth, and this is what I wanted
for my youngest son also. However, all the professionals are insisting that he
start the local public school preschool for children with disabilities. I want
to do what is the very, very best thing for my son. I’m very confused right now
about what to do. I think reading some of your writings will be a great source
of help for my family. Thank you for all of your work!!!
T.P.
At 3:26 PM, james williams said…
You’re welcome.
Don’t take what the professionals
say too seriously–they work in the educational system and are, in many ways,
required to support it. They all have jobs that they want to maintain, and can
only go so far in arguing against a system they work for. (They might get in
trouble if they advocate for homeschooling.)
I’m curious, what state do you
live in? Legislation on homeschooling differs per state. In some states,
professionals do have power over the schooling of children. In other states,
like my home state of
If you want to know what is best
for your son, then the best thing to do is listen to your son. By this, I mean
that if your son is having trouble in school, try to homeschool him. But it
also means that if he has trouble while homeschooled, you might consider
sending him back to school. My own sister, who is not autistic, was
homeschooled for 3 years, and is planning to return to school because while it
worked out a lot for me, it did not work out that well for her.