Wednesday, April 1, 2015

Day 1: Acceptance is Understanding

April is Autism Awareness Month. 

This month you will most likely see your Facebook newsfeed filling up with puzzle piece symbols representing autism, pleas to “light it up blue” in support of autism, and frightening statistics about the growing autism epidemic.  You may see videos and commercials that show children having autistic meltdowns.  You may read quotes from Autism Speaks that tell you about exhausted families that are barely getting by.  And you may hear about the many “causes” and “cures” for autism. 

During this month, I am pledging to write on post a day on my blog.

However, I will not be quoting frightening statistics nor talking of epidemics.

I will not describing autistic meltdowns or my family as “barely getting by.”

Instead, I will be writing about autism acceptance and what this means to my family.

Why am I choosing to write about acceptance rather than awareness?

Because I believe the difference between these two words is vastly important.

Because I believe at this point, most everyone in our society is aware of autism. 

And, most importantly, because though I believe that the challenges associated with autism are great, we cannot stop the conversation there.  We must talk about the strengths too.

When Ben was first diagnosed with autism, I was aware of the frightening statistics. 

A few Google searches later and my “awareness” grew. 

It took me many months before I stopped seeing Ben’s future as a bleak one. 

When Ben grows up and becomes an adult, I expect him to live in a world that does not judge him because he is autistic. 

I expect him to be afforded the same opportunities as anyone else.

I expect him to attend school, make friends, play sports, and take part in activities that he enjoys.  

In short, I expect him to thrive.

In order for this to happen, our world has to come a long way towards accepting differences in others.

And this starts with understanding that differences are not inherently wrong but can actually be strengths.

So today, my topic is about understanding autism.

Let me start by saying that I don’t expect you to understand everything there is to know about autism.

I don’t expect you to spend the hours of research that I have into autism, sensory integration, occupational therapy, and related services.

I do, however, hope that you take the time to understand these ten things about autism. 

I don’t need you to feel sorry for my son or my family. 

Instead, I ask that you accept my son for who he is.

Acceptance leads to understanding.

A lack of acceptance leads to fear, which leads to intolerance and bullying.

Let’s stop the cycle of fear.

Here are my ten things I wish everyone would understand about autism:

1)    Autism is not a disease. 
You don’t “catch” autism nor do you grow out of having autism.  Also, because autism is not a disease, there is no cure.  Autism is neurological and impacts the way a person perceives the world and how they interact with others.  Sometimes this impact can cause challenging behaviors, and certainly these challenges should be addressed, but autistic individuals also have a unique perspective on the world, and this perspective should be celebrated.

2)    Autism does not have a “look”.
Most parents of children on the spectrum have heard the comment “…but he doesn’t look autistic” more times then we can count.  A person cannot tell that someone is autistic simply by looking at them.  Autism is part of every ethnic subgroup and can be found in males as well as females (though it is more prevalent in males).   Autism is a neurological condition, not a physical one.  Individuals on the spectrum look just like everyone else. 

3)    But I thought all autistic people _______ (fill in the blank…)
There are many stereotypes associated with autism.  Some people believe that all autistic people act like Dustin Hoffman’s character in the movie Rain Man.  Others may think that all autistic people stare off into space for hours, watch ceiling fans, rock in the corner, line toys up to infinity, refuse hugs…. And, it is true, that some do these things.  But not all.  My son loves hugs and seeks them out from loved ones, but he shies away from abrupt touch.  Autism is a spectrum, which means that every person has his/her own unique characteristics.  No two people are alike, so it’s very important not to think that because you heard of one person on the spectrum who loved to recite states and capitals, that all act that way. 

4)    Adults are autistic too!
When we hear about autism in the media, it is usually associated with children.  Many people forget that these children grow in to adults, and the autism does not go away.  Many adults develop coping techniques for the challenges of living in a world not designed for those on the spectrum.  In fact, many cope so well that the casual observer would not realize that they are autistic at all.  However, the autism is always there.  Other adults will require supports for the rest of their lives.  So much of the conversation about funding focuses on children, and while this is important, it is equally important to discuss how to support autistic adults in our community as they transition in the working world.  I hope that by the time my son reaches adulthood, he will find world that embraces his strengths in the workplace while also honoring his differences.

5)    Autism means "different, not less"
Dr. Temple Grandin, a famous autistic advocate, coined the phrase “different, not less” and this phrase says so much.  My son and those like him may experience the world in different ways than we are accustomed, but that does not make them less than us.  He is no less human because he acts differently than what most people are accustomed.  This holds true for my son, and it equally holds true for those on the farther reaches of the spectrum, who will require supports for the rest of their life.  Their differences are even more magnified than his, but they are also “not less” than others.  They, too, require dignity and respect.

6)    Presume competence
This is another phrase that has resonated with me on my journey towards understanding my son’s autism.  The term “presume competence” means, at its core, to always presume that the person whom you are interacting with is capable of understanding and wants to communicate, even if they are not capable of showing that they understand at the current moment.  It may be days, months, or even years before they are able to articulate their understanding, if ever.  However, just because an individual is nonverbal or incapable of communication does not mean that they have nothing to say.  Presuming competence means believing in the intelligence inside every human being, not thinking of them as empty vessels.  It means not talking about a child in front of the child.  It means never giving up on the quest to help a child communicate and reach his or her full potential. 

7)    My child isn’t giving me a hard time…he is having a hard time…
It is easy to assume that the child who is having a meltdown in the middle of the shopping mall is a spoiled brat, a product of poor parenting.  It’s easy to cast a judgmental glance in the direction of the parents and think, “If that were my child, I would…”  Once you have a child on the spectrum, those thoughts just go away.  It is true that child having a meltdown in the mall might be a spoiled brat.  But…what you are witnessing might be something different entirely.  That child might be completely overwhelmed by the loud, frightening chaos around him, noise that is magnified tenfold because of his delicate sensory system, and you might be witnessing a child dealing with sensory overload.  Autism parents have learned to never, ever judge a moment like this.  And we ask the same of you.  A little kindness goes a long way. 

8)    Respect the stim
One of the trademarks of autism is what is known as the stim, or a self-stimulating behavior.  Contrary to how it sounds, a stim is actually calming for the individual.  Stims are things like hand flapping, twirling in circles, flicking fingers in front of one’s face, rocking back and forth, etc.  Some people seek to eliminate stimming behaviors, and while I agree that dangerous stims (head banging, etc) should be eliminated, we have heard from many autistic adults that the stim can bring peace, comfort, and even joy.  It’s also important to remember that these types of behaviors aren’t reserved for just those on the spectrum.  Those of us who tap our fingers, bite our nails, doodle, or twirl our hair are engaging in socially acceptable forms of stimming behaviors.  Hopefully in time more will understand and respect the stim.

9)    Rigid obsession or passionate interest?
One of the characteristics of Ben’s autism as listed on his evaluation was his “rigid obsession” with trains.  It is true that individuals on the spectrum tend to find one topic that becomes a point of intense curiosity and focus for them.  However, rather than viewing this as an obsession, I prefer to look at it as a passionate interest.  When channeled properly, this interest can become a learning tool and a source of great joy.  Just as many people are huge sports fans or have collections even as adults, individuals on the spectrum should be respected for their topic of interest, even if it is a five year old who is fascinated by the presidents.  On a side note, Ben's "rigid obsession" for trains has now been replaced with a deep love of Darth Vader and Star Wars.

10) We are different, but we are also alike…
It is easy to focus on all of the ways that people on the spectrum are different from us, but it is important to remember that they are people too, and we are truly more alike than different.  Autistic people may have a hard time interacting socially, but this doesn’t mean that they don’t want to have friends.  Reach out to others, even if it feels uncomfortable at first, and you will often find that it is you who learns the most in the long run. 

During the month of April, I invite you to start having conversations with others about autism and seek to understand the rich variety of people who make up the spectrum. 

Talk to me about my experience raising an autistic son. 

Talk to others in your community, whether they are parents, teachers, or therapists who work with those on the spectrum. 

And, if you are fortunate enough to meet an autistic adult, talk to them because they are truly the experts.  Listen and seek to understand what they are telling you because no conversation about autism should happen without them.

Seek to understand and accept the differences when you see them, whether it is my son flapping his arms in excitement while he’s waiting in line or a child reciting his states and capitals while pacing back and forth at the deli counter.

Understand that differences should be embraced rather than feared.

Seek to learn from these differences.

For when you do, you are on the road towards acceptance.

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