Sunday, April 1, 2012

April is Autism Awareness Month - But we Live it Every Day - #Autism

Autism Awareness Month

If you read my blog regularly, then you must know by now that my sons are both diagnosed with Asperger Syndrome.  The world has come a long way in terms of autism awareness.  We all know that autism exists - but sadly, the rate of diagnoses is still climbing.  Hopefully the many events and fundraisers will bring us closer to a day when autism no longer exists.  Until that day, we also hope that awareness will bring about better understanding, even for kids like mine, who are high functioning.  

When they were still in the public school system, I took special care to visit my boys' teachers before each school year began.  I would get nods and smiles.  I would leave feeling as though there was some sort of recognition, only to find myself back in at least one of the classrooms a few weeks later.  This was the point in time when the teachers realized that Asperger Syndrome meant more than just a bright kid with a few lovable quirks.

This second session was used for explaining why my children find it nearly impossible to ask for help, that reading ability didn't equal comprehension, how the overall set up of a public school triggers sensory integration disorder, why it was hard for my children to make transitions, and more.

If I was explaining these things to educators with Masters Degrees, (who will be dealing with more and more autism spectrum students every year)  it is certainly no surprise when most citizens don't recognize these traits as autism.

As young boys, the autism was much more obvious.  They flapped their hands, they walked around in costumes, and the speech that they copied (called echolalia) was juvenile.  It was easy to figure out that they were quoting something they had heard somewhere else.

Now they are pre-teens.  They have traded flapping for nail biting, foot tapping, noise making,or hair twisting.  They dress "cool", and their scripted speech comes from tween oriented television or movies, so they can often sound a bit sassy.  (unfortunately, there aren't anymore Wally Cleavers on television..)

For us, the photo below is what autism looks like.  They look just like ordinary kids.


For years, we have worked intensively on social skills.  Their progress is very encouraging, but on difficult days their clear speech and good carriage will earn us looks of scorn because these boys don't "look" autistic.  But, "autistic" doesn't have a "look".  For every person diagnosed, it has its own manifestation.  Even my own children, who are identical twins, can be autistic differently.  And so we have endured many  "tsk, tsks", sighs, groans, and other words and sounds of general disapproval when their behavior may seems immature or I look like a terrible mother.

Oh, yes, there's that.  My parenting skills are often under the microscope.  People who know us will either praise the wonderful job I am doing, or express their opinions about how shameful it is that I am depriving my children of all of the great socialization opportunities available in a public school.  (That has a tendency to make me laugh)

Then there are those who don't know us.  These folks will either be charmed by two young men with exquisite vocabularies and excellent manners, or they will be appalled that boys of their age are acting out over an unseen anxiety, or behaving poorly during a difficult transition.

Some of the Hallmark traits people diagnosed with Asperger Syndrome share are delays in emotional maturity, anxiety, an unusual ability to memorize facts, problems coping with stress, and difficulty expressing emotions or thoughts.  (This is why they use the quoted speech from movies and television so often.)

There is also a tendency to fixate on favorite subjects and become obsessed with them to the point that they interject that subject into every conversation, even when it isn't appropriate.

Usually, these kids will have the emotional capacity of a child two thirds of their actual age.  My boys who are almost twelve have the problem solving skills of 8 year olds.  This gap will begin to close in their twenties.

If the latest statistics of diagnoses are correct, and 1 in 88 children are being diagnosed with some form of autism, then it is nearly impossible to be alive and not have autism touch your life in some way.

Please take advantage of the educational opportunities being presented all month long.  The ribbons, walks, auctions, and blue lights are amazing, and I am grateful for them - coupled with knowledge they are even better.  My greatest wish is that my boys someday see a cure, but for today, I will take compassion and understanding.