What Autism Awareness Month Means To Me...

It is April and that means that it is Autism Awareness Month.  I have changed my facebook profile picture to a "Light It Up Blue" pic and ordered my new Autism Awareness Button.  I have even put a cool new Autism Awareness decal on the back glass of my suv.  I am doing all the things an autism mom is supposed to do for the biggest month of the year for a parent raising a child with autism.  Although we should promote awareness every day of every year (which I do always), there is a certain excitement that goes along with April.  It's almost like it's our chance to educate, advocate, and share our children with the rest of the world for thirty days of acceptance.  But what happens after April 30th?  Do we go back to our old ways of apologizing for our children's behavior?  Do we go back to explaining to strangers why our child is headbutting a table in a resteraunt? 

April has opened my eyes that we are only given thirty days to connect with the public.  This is our one opportunity as parents of children with autism to really have our voices heard.  If we only have thirty days to focus on Autism publicly...what should we say?  A blue light bulb is not going to explain to a stranger why my son doesn't know his own name or why public places cause him to have meltdowns.  So...if we only have thirty days...what do we want people to know?  I am not sure people care about statistics or that they care if autism affects more boys than girls.  People want real life...they want explanations...people want clear cut answers...not guesses or perhaps.  For thirty days...the public needs truth, feelings, and emotion...it is the only way to touch people's hearts and we all know the heart controls the brain.  We need to start educating and advocating through people's hearts...then the rest will follow.

This is an abstract list of things I think need to be shared with the public...not statistics...not blue light bulbs...not a puzzle piece...real life things...things that touch people's heart and make them want to understand.

1)  There is nothing in this world more innocent and pure of heart than a child with autism.

2)  When you see a child in public who appears to be misbehaving or having a tantrum...don't judge.  That child probably has autism.  If you aren't sure...just look at his mother's face...if it is tired and creased with worry...then you will know.  Listen to her voice...if it is soothing and calming...then you will know.  If she appears to have zoned out the rest of the world and only sees her child...then you will know.   Don't make assumptions.  If the mother is doing all she can to calm the situation and the child is oblivious to her and the rest of the world...then you will know.  Do not assume.

3)  Don't say..."He doesn't look like he has autism".  This is the number one no-no for a parent raising a child with an autism spectrum disorder.  Autism doesn't have a look...it isn't tangible...it isn't something you can grasp...and it doesn't have tell-tale physical features.  In fact, most children with autism are some of the most physically beautiful children in the world.  A parent of a child with autism has had to learn to accept a professional diagnosis given to their child and everytime a stranger discredits that diagnosis the parent feels like they are at square one.  The correct response to a parent when they tell you that their child has Autism is "Tell me how I can help".

4)  Don't assume that a diagnosis of autism means my child isn't smart or that my child has mental retardation.  These are stereotypes.  Most autistic children have average to above average intelligence...they just have to go about learning a different way.  I like to compare autism to the poem by Robert Frost..."The Road Less Traveled".  People with autism take the road less traveled.  They don't take the easy road that is from point A to point B.  They take the road with lots of turns and twists and curves.  It takes them twice as long to get to their destination but the outcome is the same.  The experience and scenery on the road less traveled is completely different from the beaten path, but the outcome is exactly the same. 

5)  Children with autism aren't blind, hearing impaired, or feeling impaired.  They cry just like you...they hurt just like you.  Ignorant remarks and staring don't just affect and hurt the parents raising an autistic child but the child hears them, as well.  Children with autism have enough challenges to face than to be the focus of public scrutiny and ridicule.

6)  All children with autism are not in special education classrooms.  Don't think teaching your household about autism doesn't apply to you or your children because you don't think you will ever come in contact with a child on the spectrum.  A lot of children with high functioning autism and aspergers syndrome excel academically and are educated in mainstream classrooms.  This does not mean that they still don't have social deficits, sensory issues, and difficulty making friends and interacting.  If you educate your children to be tolerant of people's differences you could be helping a child with autism be accepted by other peers and you would be helping remove the social stigma related to autism.

7)  Don't insist on trying to cure a family member or friend's child with autism.  As far as we know there isn't a cure and right now all we have are treatments and therapies that help to develop communication, aggressions, anxiety, and social skills.  Know that a parent of a child with autism is making every effort to help their child to grow and develop into the best adult that they can be.  Giving parenting advice or behavioral advice is not appropriate to a parent raising a child with autism.  They are getting all of the advice they need from pediatricians, therapists, behavioral specialists, and special education teachers.  Don't add to the list because I can assure you that this parent is already up to their eyeballs in advice.  A "spanking" or "time-out" is not going to cure autism.  Making a child "face their fears" is not going to cure autism.  Let the parent do their job.  If you want to support them...offer a hug or a shoulder to lean on.

These are the things that I think people need to hear.  They need to hear it straight from the heart.  The heart speaks to the mind and if we start addressing people on an emotional level then they will start to understand autism on an intellectual level.  Tolerance and understanding are not going to happen through statistics, numbers, facts, slideshows, articles...they will come about from love.  I will continue to "light it up blue" because it is Autism Awareness Month, but I'm sure as I have ever been that we have got to start getting into people's hearts if we want true awareness.