by Cindy Heimerle
Autism-- in one word your life can change forever. Unfortunately Autism is changing more lives everyday.
Ten years ago 1 child in every 2,500 was diagnosed with an Autistic Spectrum Disorder. According to the
Center for Disease Control today 1child in every 166 will be diagnosed. Broken down that means 68
children per day, 3 per hour.
Autism is in a group of disorders known collectively as pervasive developmental disorders (PDD). Under
this label, also known as Autistic spectrum disorder (ASD), is Asperger’s syndrome, Rett syndrome, Autism
and PDD-NOS (pervasive developmental disorder-not otherwise specified). The children on the spectrum
can be as different as night and day and yet still be similar.
Three years ago my son was diagnosed with an ASD. The operative word here is spectrum, it is both
broad and diverse. I remember thinking to myself that he couldn’t be Autistic because my view of what
autism was seemed to be something between Rain man (a Dustin Hoffman role in a movie of the same
title) and a totally unrelated person who lives in his own world. My son didn’t seem to be either.
In most cases you don’t know what is wrong with your child. In my case I initially thought that my son
was deaf. He didn’t respond to his name or turn to me when I talked to him. Then I noticed that he
seemed to fixate on things like this ball on a stand he had that played music. He was delayed in the
typical developmental milestones. His play skills weren’t there, he didn’t babble, he never seemed to
maintain eye contact and he had some really strange sensory deficits. But this was my case; every child
is different.
Autism is neurological-behavioral syndrome caused by problems of the central nervous system, which
affects a child’s development. It affects thought, perception and attention. Onset of symptoms usually
occurs within the first 3 years of life and affects social interaction and communication. These children’s
brains are wired differently then most. Signals that the body sends from eyes, ears, hands and other
sensory organs can be blocked, delayed or distorted; because of this Autistic people do not like change.
They usually display restricted, repetitive and stereotyped patterns of behavior, interest and activities. In
some cases a child is very typical in development and then seems to regress, stops speaking, no longer
seems interested in social interactions.
Our children look like typical cute kids and when they are young to a non-observant passerby you might
not ever know, unless they are having a moment. Let me explain a moment, it can be caused by
absolutely anything, usually because they are over-stimulated or perhaps they are fixated on something
that you are taking them away from. When my son was a year old I used to go to a local deli, he didn’t
walk at the time so I would carry him in, he was fine and then as I went to leave more often then not he
would freak out, pull my hair, biting me and I can’t tell you how many dropped cups of tea. It wasn’t until
later that we realized that he only did this when they had the ceiling fans on because he wanted to
watch them go around. I can’t tell you the number of looks and judge-mental comments I have endured.
I have since learned to have my tea at home.
If you have a child who has lost language skills or who isn’t speaking and playing like children their age or
if they exhibit repetitive patterns of behavior (lining things up, hand flapping and hundreds more) bring
them to your doctor. Usually a pediatrician does not diagnose PDD’s. They usually refer you to a
Neurologist a Psychologist or a Developmental Pediatrician. The really important thing to know is that the
earlier a child is diagnosed the better their chances of learning. Autism can not be diagnosed by a simple
blood test or anything like that, it is diagnosed by visual observation and parental input so write things
down, video tape your child so you remember when a behavior started and how long it lasted etc.
The day my son was diagnosed I got in my car and couldn’t move. I started to cry and in a whisper said
to the Lord “How do I handle this? What do I do now?” Instantaneously He spoke to my heart that my
son was the same today that he was before he was diagnosed and that he was created for Gods
purpose not mine.
I have reminded myself of this over the last several years through
- The challenges of finding therapies and teachers and programs (speak to parents who have done
this already)
- The countless nights with no sleep (and I do mean NO)
- The grieving process (when you mourn the dreams you had) constantly grateful that Autism is not a
death sentence
- The research on the Web and books (which must be filtered through the grace of Christ or you can
make yourself crazy)
- Dietary changes (or not eating at all)
- The hardest of all helping my other three children to deal with how much this affects the entire
family.
If you know someone who is dealing with a special needs child reach out to them, you can’t imagine so try
to learn, listen to them, encourage them. Expect your relationship with them to change, it takes all we
have some days to just get through, I can’t tell you the number of times I have gone to bed so glad that
God’s mercies will be new every morning or the days that I have told the Lord at 7pm that my children
needed to go to bed because I could do no more. The #1 most important thing you can do for them is
PRAY.
If you can handle it, baby-sit and let them go out for a while (something that we hardly ever do because
we really need an adult to watch our children). You can be supportive and understand that our lives are
consumed with therapists and teachers and tantrums and we don’t always have a minute to chat. On
some days you need a PhD to figure out my schedule.
Having said all this one last word of advice that can help us special needs moms and dads even when you
don’t know who we are. Don’t give us dirty looks when or children tantrum and you think we should be
doing something about it (sometimes ignoring it is what we are doing). Save your comments when our
older children are screaming please don’t hurt me over and over again because they need to use a public
bathroom. Understand when they start running in circles in the middle of Sunday school. And when you
meet me in a grocery store (I’m the one that for all 12 aisles my son who is strapped in the top of the cart
is screaming I OW his version of I want out) understand that if I could have done this without him I would
have. Believe me I know that you don’t want a screaming child in the store, neither do I.
Like I mentioned Autism is on the rise. It affects more children than all other children’s disorders and
syndromes combined. That the numbers are increasing is the one thing the experts can agree on but no
one knows what causes it or how to stop it. Some believe we are better at detection now. Some believe
that there is a pre-genetic link and that combined with environmental factors is at fault. Still more think
that it is caused by childhood vaccines (containing mercury). But when you are a parent you get to a
point where the only reason you care about why it happened is so someone else does not have to live
through it. At the current rate of increase in 10 years it will affect 1 out of every 11 children.
The experts also agree that the earlier a child gets help and the more intense the therapy is the better
the children will do. My son is living proof of that. He now has some language and can communicate his
basic needs. He can tell me that he loves me and will let me hold his hand. He has an angelic smile that
is contagious. He does still have many issues and I don’t know what the future will hold for him but I do
know that he has taught me that every day is a gift. Every spoken word and every step should be
cherished and as hard as it is I can’t imagine life without him. What God has taught me through this and
the people he has brought into our lives because of it has shaped my life, increased my faith and made
me stronger in my walk with Him and for that I will always be thankful.
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