Tuesday, March 29, 2016

Why Autism Awareness Month can be Hard if you are #Actually Autistic

April is coming.

For those of us who are part of the autism community, April brings a mix of emotions.  April is Autism Awareness Month.  

I myself am not autistic.  Before my son was diagnosed with autism, I would have thought that an Autism Awareness Month would be a very good thing, especially for the people who we are raising awareness for.  Unfortunately, I found out very quickly that this is sadly not the case.

In April you will undoubtedly see advertisements on social media, commercials on television, or perhaps even posters at local schools and businesses urging you to “Light it Up Blue.”  Home Depot even sells blue light bulbs for the front porch of your house.  In the past, the Empire State Building, the White House, and many other landmarks around the world have turned on their blue lights to “shine a light on autism awareness.”   This all sounds like a very good thing.  Until it’s not.

The “Light It Up Blue” campaign is backed by an organization known as Autism Speaks.  It is without a doubt the largest autism organization in the world.  However, it also most likely holds the title of one of the only organizations that is openly despised by the very people it claims to be helping- autistic people themselves.  You can read the reasons why most autistic people cannot in good conscience support Autism Speaks here. 

The reason that so many people have a difficult time with Autism Awareness Month (myself included) is because so much of the conversation during the month centers around puzzle pieces, blue lights, and walks.  Sadly, the conversation very rarely moves beyond superficial "awareness" of autism.  At this point (if you've seen the movie Rain Man) you know what autism is.  We need much more than awareness.  And sadly, much of the money raised through these awareness campaigns goes towards trying to find a cure for autism rather than providing services and supports for the children and adults who are already here.

April is a hard month for many adults on the spectrum.  There is a lot of conversation about the devastation caused by autism.  Ads that remind everyone that “1 in 68 children will be diagnosed with autism” continue to train the public that autism (and by association, autistic individuals) are something to be feared.  Autistic adults have told us time and again that when organizations such as Autism Speaks talk about trying to eliminate autism, these individuals hear that they (the autistic adults) are “less than” others, something to be feared, pitied, and something to actively eliminate altogether.  Because autism is not a disease like cancer.  Autism is a neurological difference.  It is part of a person’s internal wiring.  You cannot separate the person from their autism.  And, therefore, when autistic people hear others talking about how awful autism is, they feel personally attacked.  And, the fact remains that while autism brings its challenges, it also gives those on the spectrum unique gifts and strengths (even if they are not discovered until much later).  Many autistic adults have said that if they actually had the chance to get rid of their autism, they would not do it because autism is a part of their identity in much the same way as our gender or ethnicity defines who we are.  

You will undoubtedly see lots of articles written by non-autistic individuals about autism during April, but, sadly, not nearly enough conversation is led by the true experts- those who are actually autistic.  And so, during the month of April, I will be featuring an article each day that is written by an autistic child, teenager, or adult.  I hope you will learn as much from their words as I have.  If you really stop to consider their point of view without judgment or attempting to frame it within your current definition of “normal”, their words will truly broaden your current understanding of what autism truly is.

In April, and every day of the year, we celebrate more than autism awareness in our house.  We celebrate autism acceptance. 

During April, if you’d really like to make a difference in the life of those on the spectrum, you don’t need to light it up blue.  You don’t need to wear puzzle piece jewelry or t-shirts.  What would help the most is to listen and learn from the voices of those on the spectrum.  

I hope you’ll join me on this journey.

No comments:

Post a Comment

Please add a comment here.