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Meeting a Family with an Autistic Child

autism

By Marlon Fletchall, M.D.

My wife and I recently had the privilege to stay in the home of a family with a 15
year old girl with autism. Being a physician, I was not altogether unfamiliar with
the condition, but I had never before experienced the relentless intensity and all-
encompassing occupation (preoccupation?) of the care that is required in such
circumstances.

The word I would use to describe Angela (not her real name) would be disabled,
rather than the popular term of a child with “special needs,” because I don’t believe
the term “special needs” defines the situation accurately. For in fact, all human beings
have “special needs,” and what autism and some other disabilities and handicaps do,
is focus upon our special needs related to these individuals. The special needs we have
would be those that can only be evoked from people that are handicapped such as they
are. These needs are altruistic and self-sacrificial. They are not needs we ordinarily
think of ourselves as requiring, particular in this age of self-absorption, self-affirmation,
and self gratification, etc. I would even go so far as to say, yes, self-ishness.

The autistic child calls us to reconsider compassion, generosity, self-control, and most
importantly, self-sacrifice, as these once were held by our culture, not as signs of
weakness, but as important components in the human experience. In a generation of
excesses into every avenue of sensuality, is it no wonder that self-control is not valued,
and therefore, that so many marriages are torn asunder by the burden of an autistic
child?

Angela is a particular striking girl to an observer, because she is a beautifully and
completely well-formed 15-year old. There are none of the physical stigmata
associated with other genetically disabled individuals, such as Down’s or Turner’s
Syndromes.

One is first struck by not only the continuous movement, but also the lack of eye
contact, so normally expected in interpersonal relationships. Angela is a perpetual
motion machine. Fortunately, it is not as random or haphazard as it appears to those
who are introduced to her for the first time. “No, she won’t wander into the bog.
She hates water.” I guess time and experience have taught her family when to and
when not to be concerned. In fact, this is why it is difficult, if not impossible for well-
intentioned people outside of the family routine, to help with her care. We frankly don’t
know when to be careful and when it is not required. So we are all on full alert, until,
from exhaustion, our systems fail, and something awful can happen.

Let me be clear at this point of one observation. Taking care of an autistic child is a
family affair, and every family adapts or breaks upon this fact. Angela is a case in point.
She sleeps with her sister, which is necessary, because she does tend on occasion to
wander at night. Angela will habitually take canned goods to bed with her. It is not a
stuffed soft toy, which would be preferable, but it is an item that can hurt in the course
of her nightly restlessness. Her sister has learned to sleep curled up in one corner of
the bed for self-protection, and yet, somehow, simultaneously, her sister knows when it
is important to get up and check on Angela.

Angela may or may not remember our visit. I suspect not. We will never know in
this life. Does she have any idea of the sacrifices of her family, for instance, or God’s
love for her and her importance in the lives of those who care about and for her? Her
mother tells us that she does not know the answer to these fundamental questions
about Angela. What she does know, is that Angela is happy, and within certain
definable parameters, she is content. But as opposed to other disabilities, the give and
take of interpersonal relationships is simply not there. As I said one evening, when
we were discussing Angela, her family will have to wait for heaven to have their first
genuine conversation with her, and what a happy, tearful, and satisfying conversation
that will be.

One evening I was playing a sort of game with Angela. It involved the remote
control, and part of the game was that I was pushing a button that did not absolutely
harmonize with what Angela wanted me to do. She was restlessly repositioning my
hand on the proper button, at which time she would say “beep.” Her father explained to
me, that the term she uses means “let’s move on to the next thing.” That is one thing
she had garnered from her experiences in modern life. “Beep” means change, end of
topic, move on.

What I am certain about with respect to Angela is this: I can’t stop thinking about her.
I keep a photo of her in my Bible, and I pray regularly for her and her family. One of
the things that dawned on us through our visit was the fact, that anyone who marries
into the family will be taking Angela on as well in some way or other. I have heard of
children breaking with possible marriage partners over this very issue.

I am not in the position of questioning God about the entity of autism, but I have some
questions for God when I get to heaven. Some, though, can be answered now. Angela
is a truth that forces us to confront ourselves as to who and what we are as humans.
It is almost as if she is some sort of angelic being trapped in an unfamiliar human form
and flopping about like a fish out of water. At the same time, being angelic, she is
attesting to a truth bigger than our daily routine—the truth of what truly matters and
our need to affirm our abject need and insufficiency before the God that formed us.
Thus, she serves as a beacon in her own needs, calling us to keep ourselves from the
devastation of our own autistic desires, and urging us to serve someone or something
else.

Her father told me of a visit their family made to a science museum. There was a device
that people could be strapped to, which flipped and twisted the rider in all different
directions. The normal person could stand the sensation for at most 20 seconds. Angela
loved it and had no problems with the chaotic motion at all. In fact, she wore out the
person running the machine. Perhaps that is what she is doing for us in the midst of
the chaotic motion of our lives that distracts and deludes us. Angela is like a moral and
spiritual lodestone, forcing our compasses to point to something other than the whims
of the moment and urging us to follow more closely the moral compass that Jesus
urged in “doing to others as we would have them do unto us,” and putting their needs
first.

…Beep.

©2010 Marlon Fletchall. All rights reserved. Used by permission.