Autism: The More We Know

Autism

The interesting thing about autism is that the more information the scientific and medical communities discover or uncover, the less impact the news seems to have for those who deal with autism on a day-to-day and really, minute-to-minute basis. The reality is that, for those of us who love and care for people—whether kids or adults—with autism, scientific understanding is secondary to our own personal understanding of how best to communicate and interact with the person standing in front of us. However, just because autism isn’t “curable” doesn’t mean that it isn’t manageable. In fact, even talking about finding a cure implies that autism is a disease, and that’s not what it is at all.

The term “autism” actually encompasses several “Autism Spectrum Disorders,” all of which are neurological in nature. These disorders are PDD-NOS (Pervasive Developmental Delay-Not Otherwise Specified), Autism (also called Autistic Disorder or Classic Autism) and Asperger Syndrome. Some authoritative sources also include Rett Syndrome and Childhood Disintegrative Disorder within the ASD classification. (Autism Science Foundation, What Is Autism)

All five of these disorders are linked to the brain, with issues affecting learning, communication, behavior and social skills. Many of them are marked by the loss of motor and language skills and difficulty in social interaction. Extreme examples of these disorders can include seizures, violent outbursts and self-injury.

Typically, developmental delays are apparent before the age of three, but that doesn’t mean children past that age aren’t diagnosed. There are adults who have been diagnosed on the spectrum in their later years. Although many people are afraid of a diagnosis of autism, it is necessary for figuring out what the next steps should be in addressing whatever issues your child is having. Be sure to go to a doctor or specialist for the testing and diagnosis.

Behaviors that can point to autism include:

  • Repeating other people’s words and phrases
  • Avoiding direct eye contact
  • Lack of empathy
  • Shying away from physical contact or simply not responding to it
  • Becoming overstimulated by loud noises and bright lights
  • Taking comfort in repetitive behavior
  • Developing motor skills “late” and/or very slowly as compared to others their age
  • Tics and/or hand flapping

You may observe all of these behaviors, or just one or two of them. When you’re dealing with autism the only thing you know for sure is that there are no hard and fast rules. We can use the word “typically” knowing that every person with autism is an individual and therefore, an individual story. As the saying goes: “If you know one person with autism, you know one person with autism.”

Anybody who deals with autism can quote two statistics from memory:

  • One in 68 children is diagnosed on the autism spectrum.
  • Boys are four times as likely as girls to be diagnosed.

Statistics speak to our need—and especially the scientific community’s need—to define something as-yet-undefinable. They can’t solve the puzzle, but they can tell you about some of the pieces. The best they can give you right now is a marker that points out the commonalities between people affected by an autistic disorder, so that you have a comparison point if you want or need it.

We’re all about the commonalities.

You’ll read all kinds of personal stories on the AutismAwareness.com site and, while every story is different, you’ll find the common threads of love, acceptance, gratitude and wonder. There are days of celebration and days of setbacks, days filled with laughter and days filled with tears. Yet, we’re all in this together, so nobody who’s dealing with autism should ever feel alone.

Autism. It Makes You Stronger.

Father Son

Five years ago I never heard the word autism. Well, maybe I did, but it wasn’t part of my life.

In my world, autism was in the category of things other people had to deal with. I had my own challenges and anything which wasn’t a priority for me well, I just didn’t hear.

Then my son was diagnosed.

The world stopped.

Truth be told I lost something that day. I lost my spirit, my drive, my thirst for life.

The days became long. The nights even longer.

I became angry. My marriage suffered. My health suffered. My business suffered.

Many friendships were lost because I couldn’t talk.

Then something happened.

I was looking through some old papers one day and found this quote.

“A man becomes a father when he sees his child.”

I realized that moment I never saw my son, I saw his problems. From that moment forward my entire perspective of live changed. Not only is my son my best friend but he has taught me so much no one else ever could. This translates into life and choices I have made, especially over the last few years. This new perspective of opening my eyes more and realizing who is around, those who are truly around, helped me find a way to enjoy the best of life.

Life is too short. Embrace those you love and do what you want to do, on your own terms.

We all have challenges. The key is to open your eyes and see the magic.

Thomas the Train and Autism.

Thomas the Train

George Carlin. That’s what comes to mind when I think of Thomas the Train.

The man who first listed the “Seven Words You Can Never Say on Television” in a 1972 monologue.

Oh my, how far we have come.

Between George, Alec Baldwin and Ringo Starr, Thomas the Tank Engine is quite a celebrity for his voice overs but to a 9-year-old Thomas is so much more.

Being married to Kim Basinger – Doesn’t matter.

A Beatles Member – Beatle who?

$580 Million sale to Mattel – Who cares.

Thomas is just magic. Pure and Simple.

When my son first started watching Thomas I thought it was like any other children’s show. One which would run its course and disappear a few months later. Oh, how I was wrong.

The little engine is part of my life more than I could ever imagined. A Day out with Thomas has nothing on what we do all year long.

Thomas is the king and you know what – he deserves to be king. In an age where video games often involve destroying something (or someone) and YouTube videos quickly spew many of those seven words George Carlin spoke about, Thomas is a pleasure.

So are Birdy, James, Harold, Sir Top Em Hat and the rest of Sodor Island.

Why this fascination I will never know.

But it could be worse. Much much worse.

My only complaint.

At some point I have to explain the Island of Sodor is not real. Maybe I’ll do the Easter Bunny, Santa Claus and Thomas all on the same day.

or maybe I’ll leave that for Mommy.

 

Photo credit to Ron Ellis / Shutterstock.com

Ausome™ Teachers Make a Difference.

High Five

Teachers.

The most underpaid professionals on earth.

With all respect to other professions, a good teacher is worth 10x any salary approved by the school board. Why, because let’s be real.

  • Teachers teach your child how to write.
  • Teachers teach your child how to read.
  • Teachers teach your child how to socialize.
  • Teachers teach your child when to ask to go the bathroom.
  • Teachers teach your child how to draw.
  • Teachers teach your child how to practically do everything from Kindergarten onwards.

Yes, I know some parents are rolling their eyes and saying no way but again, let’s be real. Teachers have your children typically 30+ hours a week. By the time your child comes home its an hour of fun, some food time, a nap and a bath.

Of course, there are many things teachers can’t do but think about it? Who really has that many responsibilities for your child other than you?

Teachers do. That’s who.

The problem is there are not enough great teachers.

Lots of good ones, and sadly lots of bad ones, but when you find an Ausome™ teacher its like winning the lottery. They are amazing, they change worlds, they create dreams, they inspire and they provide hope.

As a parent you must do everything you can to find awesome teachers.

When we found the perfect teacher — found is a strong word, we got lucky — everything became easier and our son became happier.

For those awesome teachers out there I just wanted to say thank you.

The world needs you more than you can ever imagine.

Am I Going Crazy.

Child screaming

Crazy. This word has a whole new meaning when you are a special needs parent.

First of all, crazy is a bad word. Crazy is not crazy, crazy just means you are normal.

Adjusting to autismhood is so very different than typical parenthood.

  • No one grows up dreaming to be a special needs parent.
  • No one grows up dreaming to be a caretaker for their children.
  • No one grows up dreaming about children who are non-verbal.

So what happens when the dream of a typical child is crushed overnight?

It can feel like all kinds of crazy is happening but trust me, you are not crazy. You are just adjusting to a different reality, and it takes time to adjust.

  • Some of it is shock.
  • Some of it is heartbreak.
  • Some of it is fear.
  • Some of it is love.

List every emotion you know. Those are the emotions you will feel all at once upon diagnosis. This is not a bad thing – it is just a hard thing.

For everyone it is different. Some can’t handle it while others excel.

I have seen the best parents become bad people with typical children, and the worst people become amazing parents with special needs children.

At the end of the day you are still a parent. A parent with a little more responsibility now.

Our ability to change and embrace challenge is what makes humanity so incredibly special.

You are not crazy.

You are simply a parent.