What makes you think high-functioning autistics never bang their heads
I arrived at my last doctor's appointment with blood under my fingernails
from what you have so delicately referred to as "SIB", having spaced out
and lost track of time until it was too late to clean up before the
appointment. The doctor didn't notice, of course. He still thinks I'm
too high-functioning to require or benefit from any intervention.
I'm not saying autistic people don't have problems. Of couse we have
problems: we're stuck in a world we're not adapted to live in. You say
your son is at his most "autistic" when he's most distressed. In terms
of overtly bizarre behavior, that's true of all autistic people, including
even the highest-functioning of us. That's why I tell you that even if
your child turns out to be high-functioning, he's not going to be any less
People who are forced to live in environments they don't understand and
don't know how to relate to are going to be distressed and have problems.
This applies to deaf people in an environment where all communication is
oral and the only signals and warnings of disruption in the environment
(e.g., sirens) are auditory; it applies to blind people in an environment
where objects are moved and rearranged without warning, people refuse to
identify themselves, and directions are only given in visual terms; it
even applies to completely nondisabled people who find themselves stranded
in a country where they know nothing of the language or customs, and where
no one knows theirs. And it applies to autistic people. A lot of the
extreme "autistic" (highly agitated and self-injurious) behaviors you
observe in distressed autistic people can also be observed in normal
people who have been pushed past their breaking point by some kind of
stress overload. We live under battlefield conditions all the time, and
some of us have lower breaking points than others. Modify the environment
to be more autistic-accessible, and teach the child some autism-compatible
skills to cope with those aspects of the environment that can't be modified.
But don't refer to the child's central ways of perceiving, understanding,
and *being* as a "disease." Dis-ease often results from an incompatibility
between the person and the environment. In an appropriate environment,
with appropriate skills, autistic people can enjoy life every bit as fully
as anyone else.
Jim critisizes those who seem to mope and moan about their children being
autistic. I would assume by many things he says that he feels that we
should be doing something about it rather than just moping. Am I correct
in this Jim?
I think that parents are going to be very upset about their children being
autistic, or any other problem their children may have. This is a natural
state for us "typical" people. Most autistics are born autistic or come
into it very early in age. We were not "with an autistic child" from the
moment of our being. Everything follows a pattern until the time we have
children, then we have a child and we can't help expecting the child to be
perfect in every way (perfect to us!). When we find that the child has a
serious problem or is not the way we expected it is natural for us to mourn.
This mourning will not go away over night and I don't think it ever really
does. A bit of it can always creep up on us many times when we least expect
it. However none of us sit around moping about it all the time. So when you
see a poem or an article in a publication that portrays these feelings they
are only one moment in time. Other times we are out there trying to get our
children proper education, trying to find better ways for our child to get
what they need.
I don't know about the seperate culture part Jim speaks of, maybe it is a
good idea, but I can't answer that. He would be happy in this seperate
culture and there are times I myself thought of removing myself to a less
involved complicated lifestyle, but I never could give up all the things
that I have hear either, like family and familiar places that I have learned
I do think that there are times when my daughter doesn't like what she is or
at least parts of what she is, she gets frustrated not being able to be
understood. Unfortunatly I can't see this any different in an Autistic
society. If my daughter usually doesn't converse in a way that we can under-
stand her, could another autistic? I really don't think so. I have seen my
daughter do things like look at bicylcles longinly, want to go out and play
basketball or on a gym with typical children and I can see the dissapointment
when she can't balance on a bicycle or run fast enough to play ball, even
when the other children are trying to include her, say nothing about when
her attempts at being included in an activity are dismissed because she's
too different. For these things I will mourn and always will. But when
she gets a kick out of something else, I also cheer for her and enjoy her
As for wishing her to be not here or someone else, thats a far cry from the
way I feel. I never was one to beleive in God and the afterlife and all that
I just felt I didn't know and I guess I'll see when the time comes. But when
I think if there is a heaven what will my daughter be like, I think to myself
I would like many of her special things that may be involved in her being
autistic, even her rocking on the floor to music and that innocent look of
wondering what is next and I would never want to not have that. The times
with my daughter crying and my not being able to sooth her, the demands that
I can't figure out that bother her so and so on, those I could do without and
would welcome the communication that could solve those problems, I often
wonder if all of her special things were gone what would she be like and I
know that if every one was I would miss her.
So I guess Jim in this part I disagree with you.
The part that I think maybe is overlooked, and I can't say for sure here,
because I am not a member of the ASA yet is that the ASA probably was started
by parents and educators and professionals, and autistics probably were few
if any. Thus it really did start out as a parent support group or a group
of "outsiders" trying to figure out the "insiders". Such a group
is a means of sharing feelings, relating to others and learning ways of
handling situations and learning to cope with the more difficult things.
Should this be what ASA should still be? I don't know. Now that there are
more high-functioning autistics I think they definitly need places to relate
to each other and they definitly need to teach us parents, educators and
professionals what it means to be autistic, but maybe the ASA just can't
break away from the parent support group type of format.
I recently talked to another autistic person who had broken away from many
other fellow autistics, because he felt they were forgetting the difficulties
or taking them too lightly. The unfortunate part is this presents a bad
view to outsiders, even the people of the ASA. The trouble with some large
groups is that they don't know how to react to such differences in opinions
and so rather than face it when it happens they will just avoid it in the first
place. Maybe this is what's happening to Jim's Idea of people speaking
at the meetings. I'm not saying it is or that it is right but who knows.
Maybe there should also be two groups, one with just autistics and one for
people looking for support. But there still should be a close link between
these groups so that both can learn from each other. Locking either out
from the other loses alot of the sense of direction of both groups.
Syracuse, New York
I have to take exception to what you said to Jim.
>I have to take exception to some of what you're saying. You imply that
>autism is simply another way to look at the world, another way to be. That
>may be true of a very small group of very high-functioning autistics
>(possibly including my own son). But I seriously doubt it's true of the
>kids who engage in SIB. I don't think banging your head against a wall
>is 'just another way to be'.
Firstly, I don't think the group of very high-functioning autistics is 'very
small' - high-functioning autistics usually don't warrant a diagnosis to
explain their behaviour. In a personal conversation with Dr. Roger Coldwell
last week, he described me and my children as 'machine people' (prefer machines
to people because machines are more literal and predictable) and he stated that
the computer science departments in our University are packed with them. The
symptoms of being a 'machine person' and a high-functioning autistic, I believe
are the same - the difference only a matter of degree. Hackers are a prime
example of the type of people I am talking about. Their behaviour is considered
anti-social and yet, most of them are considered 'normal' even if they are a
bit 'nerdy', but I doubt that you could find one of them that considers hacking
a 'crime'. Obviously then they do have a different way of looking at the world.
I know I do......it took me over 30 years to find just one person that viewed
the world as I did (that person was my oldest son - I did most of my education
in the pre-computer era).
>My son is at his most 'autistic' when
>he is most distressed, when he is most unhappy.
I'm not surprised! Stress has disasterous effects on anyone who is
hypersensitive. Our bodies are unable to cope with any overload of hormones
and/or transmitter substances (I black out under extreme stress -physical or
emotional). Since autism is thought to be due to a lack of dopamine in the
brain, what would you expect to happen when the other neurotransmitters which
give autistics their characteristic behaviour are present in excess?
To explain SIB, you need look no further than this. When the child is
frustrated he takes that frustration out on the person/thing causing it. If
society is the cause, then he rebels against it....often turning to crime to
seek his revenge. If the frustration is with himself, he abuses himself. From
early childhood, I have been aware that my body and self are not the same. I
used to spend hours as a child looking in the mirror trying to recognise my
self in the body that was looking back at me (Jim will know what I am talking
about here, even if some of you don't). This detachment of body and self, I
believe is the cause of SIB.......'self wants to communicate; body won't
co-operate; so self punishes body'.
>I don't think he
>enjoys not being able to communicate with much of the world. I think autism
>is a disabling process for him. Maybe it isn't for you, but I don't think
>you speak for all autistics.
Well, Jim speaks for me and my family. My daughter, Helen (6), has never been
EXPECTED to be any different from what she is and seems to be quite content to
be in her own world - I am happy to leave her there because I belong to her
world too. I know the pain and suffering that society can inflict on us by
expecting us to be 'normal', we aren't and we don't even want to be. We take
pride in our differences. If your child adopts your expectations for him, he
will continue to be frustrated with his own existence. He will try to measure
up and will continually fall short, no matter how high-functioning he becomes.
I am fighting this disease because it prevents
>my son from enjoying life to the fullest.
To call it a disease, implies that it can be cured. It is a condition (a
lifetime one at that) and the only way he will learn to cope with this
condition is to be allowed to be himself and not turned into something
Learn to appreciate what he is, not look for what he isn't! That is the only
way he will learn to enjoy life to the fullest.
That was a wonderful description of yourself and your relationship to
your son. It gave me a little more insight into what this style of
consciousness called autism really means.
You mentioned a theory of autism based on a lack of dopamine in the brain.
Do you have a reference for that? Has anyone ever tried L-Dopa in the
treatment of Autism?
Lots to respond to there. First of all, yes, I am saying parents should
be trying to get out and do something about problems instead of sitting
around moaning, but that's not all I'm saying. The things parents (and
other interested parties) should be trying to do involve teaching skills
an autistic person can use AS AN AUTISTIC PERSON to function, and also
working for reasonable accommodations in the environment to allow the
autistic person to participate, rather than trying to make the person
"normal." In your example of your daughter being sad because she doesn't
have the coordination to ride a bicycle, your feeling sad when you see
her feeling sad is a perfectly appropriate response from a caring person.
The point is, this is something your daughter WANTS to do. It's HER wish
for herself, and you want her to be able to achieve her own goals. How
can you help her? You can try getting her some occupational therapy that
takes into account some typical ways autistic brains interface with bodies,
and tries to work out a way she can accomplish the things she wants to do.
This is different from trying to get her to do something she's not
interested in, not because it will help her in any practical way (e.g.,
being able to prepare her own lunch), but just because it's something
you think a normal child should be doing. I remember being forced onto
an amusement park ride (over my very strenuous objections) that had
several sudden "dips"--in the dark so I couldn't see them coming and
prepare for them--lots of upsetting sounds, and things jumping out of
the dark at the riders without any warning. It was terrifying, disorient-
ing, physically and emotionally agonizing. And the reason I had to do
this? Everyone else was going on the ride and I was being an "oddball"
by not wanting to participate in this normal and age-appropriate activity.
I don't see normalcy as any kind of justification for forcing people to
do something they find distressing, in the name of recreation.
William and Barbara Christopher's book _Mixed Blessings_ contains a letter
Barbara Christopher wrote explaining their son's new sensory integration
program. In the example she cites, the child is drinking milk out of only
one side of his mouth. In the typical behavioral program he's been in,
the intervention would consist of instructing him to drink the milk
"right" and penalizing him, resulting in an anxious child, spilled milk,
more punishment, and then a tantrum by the child. In the new sensory
integration program, the therapist recognizes that an autistic child might
not be aware of both sides of his mouth at the same time, and gently asks
the child where the other side of his mouth is, while lightly stroking
that side of his face. Just one small example of recognizing how autistic
people function and working WITH those autistic processes instead of
trying eliminate them.
As to whether other autistic people could understand your daughter when
she doesn't converse in a way you can understand, there hasn't been much
exploration of this because it rarely seems to occur to non-autistic
people that this is even possible, but the small amount of anecdotal
evidence available suggests that the answer is yes. I have observed
lower-functioning autistic people who appeared to me to be communicating
quite clearly, but the other (non-autistic) people around them, often
including their own parents, didn't notice. I've talked to a couple of
other high-functioning autistics who report similar experiences. Donna
Williams reports such an encounter in her book, with one of the first
autistic people she met after learning of her own diagnosis. After
spending some time with the non-verbal young man, she turned to see his
mother (who was also a teacher of autistic children) watching them and
"`I never thought he had any language,' she said. `Now I see he does.
I just don't know how to speak it.' She said she had never seen him
look so `normal.' I had never felt I'd understood another individual
so well. `We think it is we who have to teach autistic people,' Kath
said. `Now I see it is us who have so much to learn from them.'"
Now, your point about parents having expected a normal child and needing
to grieve about that is a very important one. The reason for the grief
is exactly that: You expected, planned for, and dreamed about having a
child of your own kind, and you didn't get one. In that sense, you're
not much different from parents who spend nine months waiting for a
child only to have it be stillborn, or who do get to hold their child
for a while and build their dreams and plans for it, only to lose the
child in infancy or early childhood. Parental bereavement is a very
real issue, and there are support groups available for parents who have
lost children. Bereavement over the loss of a planned normal child does
NOT need to mean grief over the existence of the unplanned autistic
child who happened to come along when you were expecting someone else.
In a good bereavement support group, parents learn to express and deal
with their grief without taking it out on their surviving children. They
learn not to make damaging comparisons between the deceased child and the
surviving ones ("My other son would have been able to do that better than
you're doing." "If my other daughter were here she wouldn't be causing
me this much trouble.") that are harmful to the other children's self-
esteem. This is what parents of autistic children need to learn to do.
Autistic children should not have to grow up haunted by the ghosts of
non-autistic "twins" who never existed except in their parents' minds.
Actually we are not so far apart as it may seem to you if it does seem like
that to you.
I fully agree with the idea of getting the help my child needs. I also
beleive like you that we need to teach autistic children in an autistic
like manner that is natural to them, not to us, not to make them match
our world, that's impossible in many cases and frustrating to them. Many
parents may have a hard time with that but I think if most would think it
out they will see the value in that.
Some of the physically damaging things like head banging I don't think we
can ever accept and am not so sure we should, maybe they can't help it, but
is it really doing them that much good, couldn't it be re-directed?
If someone is terribly depressed and needs out of their state and decides that
the only way to end it is to step in front of a speeding train, shouldn't we
Grieving, is something that I don't totally know if you can understand the
feeling that we have. We constantly strive to cope with it or do away with
it, but everywhere we turn it faces us. You speak of getting help for our
daughter, When you fight for 3 years to get a program that you need for your
child and in that 3 years your child is in the wrong program, you are trying
to make sure that the therapies (my daughter receives occupational, physical
and speach) meet her needs. Now you run into people who insist that because
they have the degree they know better than you, so they do the therapies and
teaching as they see fit, sometimes and quite often against our thinking and
values. They don't beleive your child is autistic because someone downtown
said they aren't even though they never saw my daughter, so this therapist
teaches the child like they think she is retarded. Then you go and find out
this person is not qualified to know how to treat a person that has autism,
because they don't work in that school. This is just a bit of what we face.
This brings countless hours and days of frustration, depression and anger,
which leads to the grief that says "Why should we or my daughter have to go
through this" when we know if she was "typical" you wouldn't have to near
as much. We took 4 years to get my daughter where she belongs, others that
are less knowledgeable than us may never get there, because they don't know
the resources or how to get them. So we can be helping and grieving at the
same time and I think most of us do. But then when we get with our children
we try to enjoy them every second for what they are, for that time we don't
grieve. And if my daughter could tell me "don't worry I'm happy and I don't
care if I don't fit in" it would make it all that much easier.
While I see what you mean about getting out and doing something and I agree
and do it myself. I don't think all autistics feel the same, How you
expressed your opinion of Temple Grandin's description of autistics as
appearing all one way makes me think that you realize this too. I don't
think that all autistics feel the same as you do about this issue, who is
right and who is wrong is a matter of opinion. I don't think all autistics
would rather just be left to their world, I don't think that all of them
are as secure about themselves as you. I think many probably would feel that
they really wish they could be "normal" just as many blind people might feel
they wish they had their sight others might be glad they never have seen.
However there probably are a significant amount that feel just like you.
One other issue is how you refer to the way you were made to feel like you
had to try to fit in. I was in the same boat as you even though I was not
autistic (or at least diagnosed as that). I was constantly told to fit in
and then I was made to do something that would make me not fit in. Then
I was told that "you don't need to be just like everyone else". All this
did was give me an inferiority complex, get me mocked for 9 years and not
help my self-esteem. Most of my friends what few I had, had very normal
families, that would have realized more what things I was put through and
you were put through were just going to mess us up and not help.
I think we make mistakes as parents, but the majority of us do not do so
on purpose. I am very aware of how I treat my daughter and what I have
her do, so that she doesn't feel odd because of things like that. If she
chooses to do something that is odd, but not harmful I consider that her
decision. Our parents were not always this considerate (and that may be
putting it kindly). When we do something to try to get our children to fit
in it comes from other thinking, often in which she is told and has a say
if she can or cares to. (I know the earings, probably are an exception!)
If often is something that we see her seem to want, however if she objects
and we feel that it's just to hard for her we drop it. If we feel she
really wants to but it is just hard for her right now, we'll try slowly
and when it gets to hard we stop and try more another time.
Often times my daughter will want something and we may mis-interpret what she
wants and put her into a bad position, but this certainly is not intentional
and she has shown us something usually pretty strongly to make us think
that is what she wants, like the carousel ride, she kept going around and
around the fence until she found where to go in and got quite upset when
she couldn't go right in (it was still running). So we assumed that is
really what she wanted, a bad choice or thinking. We probably should have
realized she was already overloaded but when in a tense situation you often
make mistakes. Just remember not every parent is like your parents or my
Education is a different story, sometimes I think that first we either need
to get rid of administration or at least educate them in what is really
important and what certain things like autistic mean. I also never knew
until the last year or so how some teachers are educated with one particular
condition in mind, their specialty may be learning disabilities or mentally
retarded. I can't beleive they never covered all conditions to some extent
but I truly beleive that they don't have the capability of recognizing
certain things that are out of their norm. Therapists I really can't say.
I tend to think they are taught the anatomy and the movements but I'm not
so sure about the conditions, anyone care to comment?? I really don't mean
to start sparks or flames here, but some I have talked to I really don't
think knew or could recognize certain things, of course I also had a school
phychologist tell us that my daughter being able to work without an aid
(when we asked for an aid specifically for facilitation) he would consider
a positive thing to see if my daughter could make it without the aid. I don't
know who he thought would facilitate her or how she could meet the challenge
without communication. I never could get that answer out of him.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
* Anne L. Pemberton apem...@ncps.vak12ed.edu *
* Nottoway High School apem...@vdoe386.vak12ed.edu *
* Nottoway VA nott...@ruby.vcu.edu *
* * * * * * * *
* "One of the most spectacular privileges of intellectuals is *
* that they are free to demonstrate scandalous stupidity with- *
* out ever jeopardizing their reputations" --- Eric Hoffer *
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
What methods have you tried for calming Christine and Dominick, and what
do you mean it doesn't help? Does it make things worse, or have no
effect at all? Any idea of what sets them off? If Christine arrives at
school in that state, it may take some comparing of notes with her mother
to figure this out. Then try to remove the trigger, or at least give her
some control over whatever aspect of the environment she has difficulty
I don't think you need to tolerate aggressive or destructive behavior. I
use the concept of boundaries, which I think is much more meaningful for
autistics than amorphous social concepts of normalcy. What you describe
is a child who is violating other people's personal and property boundaries,
and she needs to know this is not acceptable. On the other hand, in
fairness, she also needs to know that *her* boundaries will also be
respected. If the times she's like this are episodic and she eventually
brings herself out of them and is ready to work with you again, then you
may just have to accept that she will have this amount of "down time"
during which you can't reach her. If you can get her to the point that
she isn't doing anything harmful, then just leave her alone until it
passes, even if what she is doing seems bizarre by your standards. That's
what was done for me when I disconnected in public the other night. I
can't say exactly what happened, except that I was in extreme low-
functioning mode, totally nonverbal, and apparently not responsive to
others. Physical evidence also points to some SIB: My hands have been
scraped raw on some abrasive surface, and my head has definitely been
banged up. Most of my visual memories of that interlude involve webs
and shapes of light against black, which means I probably spent a lot of
time staring at street lights through some refracting material. Weird
behavior? Maybe, but unlike head-banging, it's harmless. If the people
who were with me had tried to interfere and impose "normal behavior" at
that time, the results probably would not have been harmless at all.
The last time I shut down that far in the presence of others, I was
beaten up by police officers.
Funny thing...I'm used to being in that state; it's just part of my life,
not of any obvious value in itself but somehow part of a cycle that is
functional overall, kind of like sleep is. It usually doesn't happen in
public, and when it does it means something is going wrong, usually that
I'm about to come down with some illness. (After disconnecting Monday
night, I woke up Tuesday morning with a sore throat and earache.) But
the simple fact that it happens, leaving aside for a moment the context
and possible consequences, is no big deal. It's just part of being
autistic: not the most important part, not the defining feature (though
it may be the most easily recognizable to outsiders), but not something
to be surprised or upset about either. But it did seem to be a big deal
to the people who witnessed it. I remember one of them kept saying things
like, "I wish you could tell me what's wrong," or, "If only I knew what
the problem is." I don't want to gloss over the fact that he acted as a
true friend. He stayed with me, didn't try to force anything, but just
made sure nothing bad happened because of factors IN THE OUTSIDE WORLD
that could have endangered me. If he hadn't done that, I could easily
have been beaten up again, or worse. There was a need for someone to be
there and do that, and I'm grateful to him for doing it. But there
wasn't any need for him to upset himself wishing he knew what the problem
was. It was perfectly obvious what the problem was: I was spaced out.
It happens sometimes. No big deal. The big deal is that I live in a
world where it isn't safe for it to happen. If I showed the same
warning signs as non-autistic people when I was becoming ill, friends
could express the same amount of concern and do equally helpful things,
without tying themselves up in emotional knots worrying about some
larger "something wrong" beyond the obvious.
Another interesting thing: I saw this person yesterday, and thanked him
for his help the night before. Instead of showing either of the two
responses I was afraid of--either being angry or being overly solicitous
and treating me as if I was incompetent--he just smiled and said it was
"interesting" and it "helped me to understand." I asked him what it
helped him to understand, and he said something about how I eventually
managed to communicate with him. Then he added that I was communicating
all along, but he had to learn how to figure it out. Something to
think about, since as I said, I was not at all high-functioning at the
time. He said he'll tell me more about it when I'm able to talk more.
(I don't know if that's ever going to happen, though. I think I'm about
finished with speech.)
And a third interesting thing: While telling me who had been involved
and what had been explained to whom (which was information I did need to
know), he commented that he didn't think my neighbors would think anything
"bad or weird" about me. He said they would probably think I was having
a drug overdose, or was drunk. That isn't a "bad or weird" thing? What
kind of mixed-up value system is that? I can't think of much I would
less want to have people thinking about me. Much better for them to know
I'm autistic and sometimes space out--non-violently and harmlessly--than
to think I intentionally put toxic substances into my body to scramble my
brain on purpose!
Your ability to understand, accept, and appreciate Helen and your other
children as they are is something I think all autistic children deserve
from their parents. I've referred to my autistic neighbor on this list.
He's twelve years old, and was only diagnosed last year. I recognized
that he was autistic the first time I met him, and I recommended to his
mother that she have him evaluated by specialists. Now he's the only
member of his family who's been diagnosed as autistic, but my "autism
radar" blips every bit as loudly for his mother and sister as it does
for him. Also, based on his mother's reports and on one brief meeting
with one of her brothers, I strongly suspect that the mother's three
siblings are autistic as well. (One of them has a diagnosis of
"psychiatric problems" and one is in a supported employment program for
mentally retarded people, though his sister believes he is not retarded.
Her third sibling, the only one who doesn't have a diagnosis of some
kind, is the one I met and sensed for myself was autistic.) If my radar
is as reliable for his relatives as it was for him, this autistic child
is growing up in an autistic family. He has many of the same problems
and the same frustrations, fears, and disappointments as any other
autistic person. But he is absolutely the most cheerful, confident,
self-accepting autistic person I have ever met. I think it's because
he has a family that understands him and doesn't expect or want him to
be anything other than what he is. I love to see his mother interacting
with him. I've seen very few parents who have such warm relationships
with their adolescent children, autistic or not.
Conditions that are inherently painful, degenerative, and/or life-
shortening are pretty much universally perceived as extrinsic to the
self and as unwanted. People with conditions like arthritis, muscular
dystrophy, cystic fibrosis, heart disease, etc. would like to be cured,
and would not feel that they would be any less themselves without the
condition. For example, in contrast to the way I experience my autism,
I was quite glad when my blood clotting disorder (potentially life-
shortening) went into remission with treatment, and I would also be glad
to have a cure for fibrositis (painful).
All other things being equal, people who develop a condition at a later
age tend to experience it as more extrinsic to the self and as more
distressing than people who are born with the same degree of impairment
or whose disability has its onset in early childhood.
Conditions that limit what people can *do*, without affecting their
perceptual or mental functions, tend to be experienced as most extrinsic
to the self, and people who have such conditions are most interested in
a cure. Thus, most people with mobility impairments or other conditions
whose manifestations are primarily physical would, if they had the choice,
prefer not to have the condition. (Judy, how does this apply to your
experience of dwarfism?) There are exceptions to this, though. Tourette
syndrome can impair people's ability to use any or all of their voluntary
muscles, and often involves tremendous social rejection as well. And
many--probably most--people with Tourette syndrome would like to be cured.
Yet I've come across several accounts of people who do experience their
"Tourettishness" as intrinsic to themselves, and feel somehow less them-
selves when the symptoms are controlled through medication.
Conditions that affect *how people experience the world* are more likely
to be experienced as intrinsic to the self, and people with such
conditions are often less enthusiastic about the idea of a cure. This
is why some deaf advocates oppose attempts to prevent or cure deafness,
considering them a threat to their culture and way of life. I've heard
a similar sentiment expressed by several blind people I know. One person,
who was born blind, said that if he were offered a chance to have sight,
he would accept it only with the condition that if he didn't like it, he
could get rid of it again. He would feel it necessary to set that
condition because he couldn't be sure the world he would see as a sighted
person would be the same world he's been part of all his life as a blind
Finally, there are conditions that affect how people experience--well,
*experience*. How one thinks, feels, remembers, perceives, believes, and
everything else. Autism is the most extreme example of this: it's a
*pervasive* condition. I prefer to call it a pervasive developmental
difference, rather than a disorder. (Mental retardation may be similar.
I'm no expert on mental retardation, but most of the retarded people I've
known seemed to be pretty happy with themselves, and only unhappy with
the way they're treated by society.) My thoughts, feelings, perceptions,
and communication processes are about the most intrinsic things I can
define to myself--a person who thought differently than I do, or felt
differently, or perceived things differently, or related to others
differently, would not be me. And all those processes are affected by
autism. Therefore, it is impossible to separate out the autism from
my self, and it is impossible to think of a "cure" for autism as anything
other than the annihilation of my self. Suppose someone wanted to change
all those fundamental processes in *you*? Would you see that as the
desire of someone who really valued you as yourself? Suppose the whole
world saw your ways of thinking, perceiving, feeling, relating, etc., as
tragedies, and wanted to change them? How would you feel about that?
When I first read this I could tell, without going back to check which
child was whose, that your son was under six years old. I don't want to
denigrate the value of early intervention, which can give autistic
children a valuable head start in learning to function in the world--
provided, as always, that the intervention works *with* rather than
against the child's natural processes. But even with no intervention at
all (as long as you didn't put him into a sterile, mind-starving institu-
tion that wold cause environmental retardation in *any* child), he won't
spend the rest of his life doing that. Your comment is similar to a
Martian parent who had accidentally been brought a human child (by a
stork with confused navigation skills), and who, without learning about
the normal course of development for humans, said, "I hope that someday
my child will be cured of being human. I don't want him to spend the
rest of his life crawling around on the floor and eliminating in his
clothes." Your son will develop other interests as he gets older--maybe
interests that will be more comprehensible to you and maybe interests
that you'll find equally bizarre, but other interests in any case.
And you know what? Even if he develops lots of interests that you can
appreciate, and even if he turns out to be very high-functioning, gets a
college degree, and has a successful career, he's still going to do that
sometimes. It's a normal--for him--way for his brain to maintain
equilibrium. Successful functioning in society involves learning that
there are places and times where personal maintenance functions are
acceptable, and other places and times where they're not. But if you try
to eliminate this behavior completely, you're going to leave him with a
sense of failure and shame over his natural processes.
Recently I was stopped at a red light and I saw that the car in front of
me had some kind of small object hanging from the rear-view mirror that
kept catching the sunlight and shooting out piercing rays of brilliant
colors. By the time the light changed and the other car drove off, I
knew I wanted something like that. I went to Wal-Mart and looked for
objects that would have the same effect with light (making use of
community facilities and resources). I found a keychain with a glass
pendant on it, but that pendant didn't diffract colors the way I wanted.
It did give me the idea of checking the jewelry department, though,
instead of just wandering up and down all the aisles (recognizing
socially significant ways to classify objects). When the saleslady in
the jewelry department asked what I wanted, I said I was looking for
something that would flash different colors when light shone on it. She
asked what type of jewelry item I was interested in, and I said it didn't
matter (verbalization of ideas and desires). She showed me an Austrian
crystal necklace, which I held up to the light and dangled in front of my
eyes to see if it had the desired effect. Then I saw some earrings made
of the same material. I bought the earrings instead of the necklace
because I could get two earrings for the same six dollars it would cost
for one necklace (awareness of economic considerations), and because I
knew I didn't need a chain because if I wanted to hang or dangle the
earrings, I could thread a string through the clips (advance planning,
and purposeful use of objects to achieve a goal). And I did not hang
either of the earrings in my car, because I know that kind of visual
distraction while driving would invite accidents (self-awareness, assuming
responsibility for consequences of actions). But when I'm not driving,
I do twiddle those small objects in front of my eyes.
That's an example of working with the autism instead of against it.
I don't think we're that far apart at all. You say you want your daughter
to be able to make the decisions that will make her happy, even if those
decisions make her appear odd--in other words, you're willing to accept
her being herself, even if that's not normal. As for your frustrations
about getting her an appropriate placement, I think I've heard of exactly
ONE autistic person who didn't have a similar battle to get where he or
she belonged. Some of us--many, perhaps even most of us--never make it
in "the system." And that's where the tragedy is. The tremendous waste
of potential, the waste of years of productive living from people's
lives, not because of autism, but because of a system that doesn't work.
That's where the grief belongs, and that's where a cure is needed.
From your description it sounds like you found something effective to do
with both children: take Christine out of the room to a quiet place and
put water on her, and let Dominick go. If it works, you're doing something
right. Or at least you're not doing anything wrong, so they can re-
establish their own equilibrium without interference.
Unfortunately, all the readings I can think of about autism will give
parents a negative, depressing, and inaccurate perspective of what it
means to be autistic. Donna Williams's book will be available in the U.S.
in October; that may be a start. Or you can suggest that the parents
join ANI and learn about autism from the newsletter, which I expect will
be as accurate and informative as you can get! How can you do better
than to come right to the source: the people who know autism better than
Autism by definition has its onset by the age of 30 months (2 1/2 years).
Parents can usually trace the signs back to very early infancy, or even
to birth, but it's not often diagnosed until the child is about three to
five years old. (My mother could feel my constant rocking even while she
was still pregnant with me.)
Probably the most obvious difference between autism and schizophrenia,
other than the age of onset (autism in infancy, schizophrenia usually in
adolescence or early adulthood) is that autism does not involve delusions
or hallucinations. Those are hallmarks of schizophrenia and other mental
illnesses. Autism involves non-standard ways of perceiving what *is*
there in the world, while schizophrenia involves perceiving things that
are *not* there.
How's that for brevity?
I'm resending this because the list processor seems to have rejected
it the first time. Sorry if it went through twice:
Using this model, my interpretation of what Jim experiences is that if
you were able to deal with all or most of his autistic symptoms, he would
still be Autistic. Is that fair, Jim?
217 Machinery Hall
The distinction between treating symptoms vs. labels overlooks the fact
that the whole purpose of a label is to describe symptoms or characteris-
tics of the thing being labeled. If a label is accurate, then it's just
a shortcut description of the characteristics under discussion. The
reason Ray's daughter (and many other autistic people, especially higher
functioning ones) couldn't get into an appropriate program until she got
the label of autism is that the school district could justify denying her
those services on the grounds that she did not have the characteristics
of autism. All the label means is that someone has confirmed that she
*does* have the characteristics of autism, so she's entitled to receive
special education labeled for autistic students, i.e., geared toward the
characteristics those students have in common that distinguish them from
What I'm saying about autism is that the characteristics described by
that label are more than just a collection of "symptoms." They're ways
of thinking, of feeling, of perceiving, of learning, of experiencing the
world and experiencing oneself, that are qualitatively different from
the ways non-autistic people do those things. The behavioral "symptoms"
are only the consequences of those characteristics, not the essential
characteristics of autism themselves. You can change behavior. (There
are some typical autistic behaviors that I think should be changed, and
others that I think should be accepted, but that's another issue.) If
behavior is going to be changed, it's easier and more humane to change
it by working with characteristic autistic ways of learning and
behaving than by trying to force an autistic person to use non-autistic
learning styles. And yes, even if you change all the outwardly
observable behavior that is recognizable as autistic, the person's
characteristic ways of being him- or herself and being in the world
will still be autistic (and with all the emphasis placed on not *looking*
autistic, the person will probably be anxious, insecure, feel inadequate
and have poor self-esteem).
I didn't make any assessment of how my neighbors perceived the situation.
I was just expressing astonishment that someone actually thought he was
being reassuring by telling me that my neighbors would probably think I
was drunk or drugged. The neighbors aren't comfortable having me around
anyway, so I guess it won't matter much to them what was happening.
Your account of the man lying on the lawn and people not doing anything
reminds me of something I saw once while going to college in Detroit.
While driving down the expressway on my way to school, I saw a car stopped
on the shoulder and a man lying on the ground next to it. The next exit
was the one I had to get off on to get to school anyway, so I exited,
rushed to the campus, parked on the closest side of the campus instead
of taking the time to drive around to the parking lot nearest to the
building where my class was, and raced up to a campus security officer.
I told him what I had seen and asked him to call in a report to his
dispatcher. "Was it on campus?" he asked. I told him no, it was on
the expressway. He said if it wasn't on campus, he couldn't do anything
about it. I said I didn't expect him to go off campus and check it out
himself, only to use his radio to call his dispatcher so the dispatcher
could call the city police or ambulance service. But he said no, if it
wasn't on campus, he couldn't even report it. So I had to hike across
a few more lawns and parking lots to get to a building with a phone, so
I could call 911 myself.
I know how you feel and maybe our case is difficult because of 1 our district
has such a reknowned Autistic program, that is in high demand, 2 that we didn't
get a proper diagnosis (although I can't help blame the district for never
taking the initiative to do a thorough evaluation by a professional who could
recognize the autistic trend). I think what becomes hard is that once the
label is on a child I think many will teach solely by what is prescribed by
that label. And I think often a child is made up of many symptoms. They
may have small parts of autistic like symptoms but these may not get addressed
in a situation because their label is something else. I don't think all
teachers do this but enough do that it is disturbing.
I also feel specifically that labelling someone Mentally Retarded does
decrease demands on them. Maybe this is a fault of the curriculum but
I know how it made me feel and I also know the level of demands that were
put on my child even when I requested that they are not seeking enough.
I knew my daughter knew more, I often told them this, but it all came back
to if she can't tell us, we have to assume that she doesn't know. So the
results of this always kept pointing to Mental Retardation rather than
really dealing with what does she know and how can we get it out.
The bad thing was that by the end of a year they would say to us "Gee I
guess she really listens, I really never guessed she knew as much as she
does" We are usually ready to scream at this time "We have been telling you
that!" Only we usually politely say "Yes I know".
So I guess what you say is right provided it really doesn't limit the
possibilities and the diagnosis is 100% right and all inclusive. The label
can't be thought of as this person is MR so I have this list from book
A which says, this is what you can expect this is how you should teach
and this is what you'll get. If people see a label and relate to only
the most traditional symptoms of the label they may miss alot of capability
where the child may have strong points that don't fit the label or they
may have weak points that don't fit the label. I feel it's kind of like
you say with make sure the teaching works with the child not trying to
bend the child to our ways in ways which are un-natural to the child.
I think Autism, Mental Retardation and Downs Syndrom to name a few all
come from the brain and as many a Neurologist has said "we can't find out
what to fix because you have to remove a person's brain to do that, so we
really can't tell why your child does something, what his capacities will
be or what his life will be". The brain is so complex and we still know
so little about it I hate to see people think that just because someone is
X he can only do Y and Z.
Well what do you think about that?
I have not always been the 'perfect autistic' parent.....I only wish I had
been. I made lots of horrible mistakes as Chris was growing up. The greatest
of these was allowing myself to believe that others knew what was right for
my child more than I did. I denied my own intuitions. I believed I was wrong
to teach Chris to read before he went to school using, what the teachers
described as, an inappropriate method. I blamed myself because I did this
for his subsequent learning difficulties. I accepted the blame for his lack
of social skills as a direct result of my actions by leaving his father when
he was six and making him change schools. By heaping all this blame on myself
I denied my own existence and experiences. By the time I was ready to challenge
other people's views of my family, Chris was already in Year 8, starting
puberty, and most of the damage had already been done.
What made me change? A parent teacher interview. My youngest boy (Tony) was
described as a 'wonderful, friendly, cooperative child who unfortunately is
not particularly bright like his brothers, but is working to the limit of
his intellectual abilities'. Tony had a C average and was in 2nd Grade! That
teacher was lucky I am not the physically violent type.....I really felt like
flooring here though. I'll bet she never said that to another parent after I
got through with her. :-) "Not bright like his brothers" is a phrase that
has taunted Tony all his life; his lack of self-esteem is directly attributable
to this. He is now 17 and is only just starting to realise for himself that he
is in fact a lot brighter in some things than his older brothers. He has his
own set of unique abilities, just as everyone else in this family does - not
least of all, is his popularity with members of the opposite sex. He has what
is referred to in popular women's magazine as 'charisma' - a mixture of wit,
charm and good looks.
By the time Helen came along I knew the type of parent I had to be for her and
so far I seem to be doing O.K. with lots of love, patience, understanding and
tolerance. Chris and I have a good relationship, but I sometimes wish I could
turn back the clock and give him back the childhood he deserved to have.
Given a choice, I would prefer not to be a dwarf. However, I'm not
given that choice and I'm not going to put my life on hold in order
to mourn that.
>There are exceptions to this, though. Tourette
>syndrome can impair people's ability to use any or all of their voluntary
>muscles, and often involves tremendous social rejection as well. And
>many--probably most--people with Tourette syndrome would like to be cured.
>Yet I've come across several accounts of people who do experience their
>"Tourettishness" as intrinsic to themselves, and feel somehow less them-
>selves when the symptoms are controlled through medication.
My brother-in-law (my autistic niece's father and a possible future poster
to DEN) has Tourette syndrome. I'm not sure but I think he does see it as
something extrinsic to himself. I know his mother had a great deal of
trouble accepting it so that may be a factor. I know my sister does see it
as an extrinsic characteristic of his. She views her daughter's autism in
the same way and is in search of "a cure".
The value of a label depends on who is pinning it on. A tormenter,
a school district, yourself can each use the same label with much
different implications. The first is an attack, the second means
a child will get treatment, the third is pride in self. You mentioned
to Speed Bump that it sounded like he was autistic. How many more
symptoms would you have to hear to be sure? Could he have no more
symptoms and still be Autistic? (As far as
symptoms are concerned, I would prefer not to watch the light reflecting
from a crystal for an extended period nor a soap opera for any period
at all.) ;=)
At some point an expert is going to have to make a decision on whether
he will apply the label autistic to a person. The label does not
change whether or not that child is autistic. Be that as it may,
he will decide to use or not use the label by looking at the
behaviors of the child and seeing if enough of them are present.
Jim, do you have an alternative? Can you give a set of behaviors such
that if a child shows all these behaviors, he or she is autistic and
not autistic otherwise? Do you have another approach outside of your
intuitive reaction which may be very valid, but not externally verifiable.
I agree with you that autism is more than the sum of its symptoms and
represents a different way of experiencing the world.
Is this difference an all or none? Are there degrees of this
difference in perceiving the world? If there are degrees, then at
what point do you apply the label? IMO the only objective way to
make the decision is in terms of the number and severity of the symptoms.
Jim, do you have an alternative?
In terms of eliminating all the autistic symptoms, I hope changing
behaviors by taking advantage of the existing autistic behaviors
will not lead to a depressed and anxious individual but one who does
things that are a bit eccentric, but effective.
Bravo, good work Jim!! I wish you were alittle more in tune with FC