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.

Tuesday, March 8, 2016

An Open Letter to my Son's Dentist

Dear Dr. Rob,

Last week it was once again time to get Ben’s teeth cleaned.  Going to the dentist isn’t easy for most people, and Ben’s sensory challenges make getting his teeth cleaned even more complicated than a typical patient.  Thankfully, he has you.

This visit was especially long, filled with a round of x-rays in addition to the usual cleaning.  As the dental assistant “counted” his teeth, we discussed the need to put four sealants on his back molars as a preventative measure.

You explained that Ben would need to sit perfectly still during the procedure and you asked me if I thought he could handle it.  You said you would rather have no sealant than an improperly placed one.  I hesitated as I watched my son sit up yet again to spit out the toothpaste that the assistant had patiently reapplied yet again.  You sensed my hesitation and asked me something amazing.  “What can I do that will best meet his needs?”

And then, wonderfully you listened.  You listened while I explained that he would need to understand step-by-step what was going to happen.  You listened while I told you that he needed to see and understand the tools that you will use.  You listened while I explained that light touch is difficult for him to handle, but deep pressure is soothing.  Then, you said that you were more than happy to follow his lead.  Your main concern was his happiness and well-being.  More than anything else, you did not want to make an enemy that day.  You knew how important this moment would be in his future associations with the dentist.  And I immediately knew the wisdom in those words.  I shared a memory of a nightmare visit to the eye doctor.  During that visit, the doctor needed dilate his eyes.  Despite describing the process, showing him the droppers, and trying to have him sit for the drops, nothing would work.  That day ended up with me holding down my son’s head while he screamed and screamed so the doctor could get the drops in.  To this day, it is one of the parenting moments I wish I could change the most.  I certainly didn’t wish for a repeat performance at the dentist.

And so we took Ben in the room- just to show him the tools.  You showed him the cool flashlight that shone blue on the wall.  You let him hold the “big slurpy straw” and asked if he’d like to try it in his mouth.  He did.  You let him hold the cotton balls and explained how they would help keep his teeth dry.  And, after all the explanation, Ben was eager for you to make his teeth “strong” and so we decided to do it.  You kept the chair at a slight angle even though it was more difficult for you to do the work, because you knew it would keep him at ease.  You talked him through every step.  As the sealant dried on his tooth, you counted, with reassuring taps on his chest.  You kept him in almost a bear hug with your body throughout, and he did stay calm.  You did so many small things in that moment that spoke volumes about the respect that you had for his needs, and I am sure you do the same for each little patient who walks through your doors.  We were able to get two sealants done that day.  I have every confidence that when we return to get the last two sealants put in place, Ben will do an equally awesome job.

I think we all can learn from the lesson you taught me that day.  By asking a simple question, “How can I help?” and really listening, you were able to meet his needs so beautifully.  I have tried to do the same in my work with students and teachers, because we all deserve to have our needs heard and respected.  Thank you for being there for my child when he needed you, and thank you for reminding me of the importance of listening and serving others. 

Gratefully Yours,

Ben’s Mom

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!