A Glimpse From Inside A Family With Autism

Portion of my June 2013 Essay – Essay is broken down as blog posts into 4-5 parts. All posts derived from the essay will lead this message to allow you to avoid redundancy if you have already read it.

For the essay in it’s entirety, use:

A GLIMPSE FROM INSIDE

This is about the difficult part of being in a family with one child diagnosed with autism. Autism is genetically linked, once you have one child diagnosed, the odds of having another one is 1 in 10. Many have multiple. As a parent of a single autistic child, I can only imagine what a day-in-the-life would be like for someone with more. While experiences may vary, I hope to provide some insight to what it is like to manage a life that has been touched by autism.

To illustrate how challenging autism can be, take a moment to think about how many times in a week you feel tired, or sick, grumpy or have a headache. Then think of a moment yourself that you might be your worst…flu? Stress? Migraine? Pain? In a room full of onlookers? ….this is the moment where an autistic child’s intuition comes into play. You, an important part of their life, their environment, their security, begin to behave in a way that is inconsistent with your normal self. This is the moment that your limits are tested. The child begins to ask questions (if they are lucky enough to be verbal) at high volume…not random questions, the same ones over and over, up close, in your face, loud, trying to generate reaction. At times, they exhibit extreme behaviors as the attempt to incite any type of response in order to create some level of predictability and environmental control. Autistic children crave predictability in their lives in order to bring some level of control over their chaotic thoughts that are constantly revolving in their minds and can look to the reaction of others to obtain it. They don’t care what type of reaction, good or bad, just something they can recognize and identify with. They will do things that would make most parents absolutely dumbfounded; this can include (but certainly not limited to), grabbing someone’s genitals, smearing feces, stripping in public, cursing. The list of possibilities are only limited by our imagination… if it will mortify you, they will try it. In fact, because of the child’s constant craving for predictability, our responses and the responses to people in public whether, positive or negative, become reinforcement for the behavior. Anger, surprise, yelling, spanking, flinching, even the act of ignoring can reinforce them. All this happens at a time when a parent is most vulnerable; when they are not feeling their best or not thinking as clearly as usual or when they are in the view of public eye.
Do you ever get embarrassed or not in the mood to socialize when you are in public? Because many of the self-stimulatory behaviors associated with autism are loud, distracting, “odd” and make people uncomfortable, autistic children are often the center of attention (as are their caretaker that is in the public with them). One can say that people should brush off the public eye, but this can be more difficult for some than it is for others. It is never a good feeling (simply out of consideration for others) for a parent to know that their child is making people around them feel uncomfortable. In addition, people who scrutinize can influence other people to do things or make decisions that impact lives.
I say this to give the rest of the world, the community, just a glimpse of what it can be like to be the parent of an autistic child. The difficult part. Personally, I am one of the lucky few. My wife and I have a relationship that has been built to endure 16 years of parenthood and 13 years of autism (since diagnosis) so far. We have had some great times, we love both our children and love being their parents. Yet, in retrospect, we look back and laugh at the fact that we have endured things that most parents couldn’t even fathom…yeah, we laugh until we cry. But at the same time, something in the back of my head always tells me that I can only imagine what it would be like doing this alone and thousands of people around us are doing just that.
A person could assume that my writing this has something to do with getting families with autism credit, benefits, support or validation for their efforts. While that would be nice, and there are plenty of people that need it, I would be satisfied if something I did or said would offer the public some inkling of understanding for what they might be witnessing.
What can be lost sight of is that, once autism enters a person’s life, the challenges and hardships extend far beyond just care for their autistic child. It affects their career, their relationships, the managing of their family, their lifestyle, the parenting of ALL of their children, their faith, their finances, their mental and physical health; virtually all aspects of their life.
On the bright side, having an autistic child also can make a person wiser. It can open their eyes to the fact that they will never know ANY other person’s entire story and therefore we should be hesitant to judge. Everybody has their own personal challenges and demons for which we only have an outside perspective. It can make someone more accepting and loving even though sometimes they don’t feel accepted and loved. It can create the habit of recognizing people’s genius rather than revealing their shortcomings. That is where true tolerance is derived and where joy can be found from the experience of having an autistic child in your life.

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5 responses to “A Glimpse From Inside A Family With Autism

  1. It is awesome! In many ways we all live similar lives and yet different.
    The first thing I learned in the “you landed in Beirut not in Holland” years was that when a meltdown occured I would have to learn to remain calm. It was like standing and a hurricane passing over you. When the eye was over you there was some sort of fake calm and then the tail of the hurrican would whip lash. So I learned to wait until the meltdown was finally over.
    On divorce, our marriage had issues before the diagnosis so I believe it was us and not autism. Autism just brought to light reality.
    Some days I am weary and do not want to interact as it takes a lot of energy to deal with out every day life, worry about the future and deal with the rest of the world.
    As far as the cards dealt with in this lifetime, well I have no regrets and not wanting to sound as a cliche but I would not change the journey, the lessons learned and the lives of others wich have touched ours.
    We have learned and we do not plan on forgetting everything we have seen.
    Great blog!

    • I happy to have touched someone today.

      On the divorce…that is a tough problem everywhere and esp tragic for families of of autism. How can one help families with this when the problem starts way before?

      For my wife and I, so much of our longevity hinges upon the groundwork we did in our early twenties.

      Our grandmothers were subordinates…woman are more equal. Which is great, but somehow they forgot to teach us how to have healthy peer-to-peer marriages.

      Where do we expect people to learn it? Our parents? Yeah right!

      We know we were fortunate… Everyone deserves intimacy in their lives.

      • Well we went through Hurricane Katrina when our boy had just been born. But we are friends and allies and out children are emotionally stable. In our case, divorce did no shatter the family in itself.

      • Happy for that. I have seen many who are not so lucky…single parents totally isolated.

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