Autism Information
I'd like you to think of autism from a special
perspective - that of the person who has autism.
Autism From the Inside
From very early on, things are too loud or too quiet. Things that move
quickly are hard to focus on. Interaction is beyond your ability or
understanding. You just can't react to situations fast enough to interact
with people (they move too fast, or don't wait long enough), so you pay
attention to things around you that are either still, or move in a predictable
pattern.
If you are fortunate to have people in your life that take the time to learn
how to interact with you, there is a chance they can help open up a whole new
world to you. One of unpredictableness, true, but one that allows you to
connect with someone else - anyone else - maybe for the first time in your
life.
What Does the Future Hold?
No one really knows how far you can go, whether or not you'll be able to live
on your own, hold a job, get married, or if you'll have to live at home or in
some institutional setting the rest of your life. But people
with autism are able to live independently, hold jobs, raise families,
and participate to a fair degree in the world around them. Some people with autism
have achieved college degrees - even Masters or Doctorates, have started and
run their own company, and have even gained world-wide recognition as one of the
best in their field (and not just as an expert in autism).
Autism From the Parents' Point of View
Another perspective on autism I'd like you to consider is that of the
parent of a child with autism. First, parents, know that you
are not alone. No matter how unusual or stressful your child's behaviors are,
someone else has a child with similar or more severe challenges. There are
other people, right in your community, wherever you are in
the world, who face some of the very same challenges you do.
What Causes Autism?
Let's go over some basics. First, autism is a disorder that is partially
genetic and partially environmental. To the best of our current knowledge, there
is nothing you can do to cause or prevent autism. It appears that a
combination of common environmental factors and a genetic predisposition
causes autism. (OK, experts, this is my opinion. I arrive at this conclusion
because of two factors - not all identical twins have autism when one of them
has autism - studies have placed the likelihood of both identical twins having
autism at 63-98%, and even when the identical twin doesn't have autism, they are
likely to have some symptoms associated with autism, such as deficits in social
interaction and/or difficulties with language. Regardless, even the 98% indicates
autism is not 100% genetic. On the other hand, even the 63% number indicates a
strong genetic influence. As for the environmental aspect, to my knowledge, there
have been no studies that have shown any particular environmental condition that
is common to those having autism as compared to the general population.)
Don't Play the Blame Game
So, parents, quit blaming yourselves or each other. The genetic predisposition
may be from so far back in your family that no one knows of any relative that
had autism. Also, quit blaming yourself for doing whatever that you think
you did (or didn't do) that caused the autism.
A Child is a Child is a Child is a Child
Next, be aware that your child is a child first. Your child's emotions don't
have autism. Your child's intellect doesn't have autism. Your child's
abilities don't have autism. Your child has a sensory system that doesn't
convey to his or her brain the same information your sensory system does.
That doesn't mean your child is out of touch with reality - it is not a
hallucinatory disorder. Your child is reacting in his or her own way to the
stimuli from their world, just as you are. The difference is that their
perception of that world is very different. For example, there are people
with autism who have reported being able to hear the thermostat switching on
and off in a room on the other side of the house. Imagine if every clicking
sound was like a jet taking off next to you. You'd probably develop some
coping behaviors that were pretty unusual too.
Connecting With Your Child
On a personal level, I'd also like to give two pieces of advice. One - when
you talk to your child with autism, wait for his or her response. It may take
10 seconds (your normal "long wait" is about 3 seconds) to 1 1/2 minutes for
him or her to respond. Take the time. Your child isn't ignoring you - you just
"move on" too fast for them to respond.
Eyes Open to Danger!
The second piece of advice is this. When your child is in danger, they most
likely will not think to yell for help. For example, if your
child falls
into deep water, they are most likely to go under without a sound. Your world
is a hearing world. Yes, your child hears, but most likely depends on his
or her sight much more than on sound. You have to use your eyes to guard
your child from danger, and not rely on your ears to hear if something has
gone tragically wrong. (The same advice also applies to trying to warn your
child about danger by yelling. You must act, not try to warn with your
voice. If your child is about to walk out into the street, you must act, not
call out a warning.)
Go To Them
Okay, I said two, but who can stop at just two? The last piece of advice is
to love your child. I know, there are many disappointments and broken dreams
because of your child's situation. But they are your dreams, and your
expectations - not his or her's. Take the time to find out what your child
wants, likes, and needs. Put up (store) or give away everything you value (hobbies,
keepsakes, pictures, etc., etc.) because when all is said and done, the
greatest "item" of value you have is your child, and, if you're anything like
me, it will only frustrate you to see one thing after another that you
value broken or destroyed senselessly (at least to you). Figure out what is
comforting to your child (often children with autism can tolerate and even
welcome deep pressure even though they can't stand a light touch), and do
it often. Believe in your child. There is no cure for autism, but people with
autism are accomplishing some pretty amazing things. Your child just might
be one of them!
Neither Parent nor Person With Autism
OK. If you've made it this far, and you're not a parent or person with autism,
this is for you. You see the toe walking, the hand flapping, the appearance
of the person with autism being off in their own world, oblivious to all
around them, making strange noises continually, etc., etc. They don't respond
to requests, won't ask for help, and basically treat you like you were
nothing more important than a wall (which, to them, you just might be). Don't
ever forget there's a person inside there - unable to relate to other people
in the same way you can. You can't expect them to "come to you" - you have to
"go to them" - on their terms. Remember, their different sensory input
is NORMAL for them.
They may not even be aware that everyone does not experience the world in the
same way they do. It is you that has the problem, and that is unpredictable.
For More Information
Check out our autism links, the
Autism
Society of America (USA), the The National
Autistic Society (United Kingdom) and the Autism
Society of Indiana (USA). Use a search engine to look for "autism". There's
more out there than you will have time to read (especially if you are the parent
of a child with autism).
ISSI Home Page