Sunday, August 24, 2014

Autism Acceptance: A Parent’s Perspective

This is a picture of Ben skipping stones in the creek.  I love this picture because it captures his zeal for life.

A couple of weeks ago, I wrote a post about my journey towards accepting my son’s autism.  You can read it hereIn the post, I talked about how parents of autistic children go through a five-step grieving process leading towards acceptance.  What many don’t realize, however, is that they are not grieving because their child is autistic.  They are grieving for the loss of the child they expected to have.

As you can imagine, my post stirred up different emotions in different people.  For some, my words resonated with them, but for others, acceptance seemed like too bitter a pill to swallow.  One autism Daddy commented on a parenting forum that acceptance is not a place that he believes he’ll ever get to.  He said that if he could rip the autism out of his son, he would.  I know he isn’t the only one who feels this way.  He is reacting with anger towards the autism because it is what he knows to blame. 

What I know now that I didn’t know then is that it’s not about the autism. 

The autism is the wiring in a person’s brain.

It changes the individual’s filters and perceptions of the world. 

For some, the wiring causes mild changes in processing, and for others, it is more pronounced, but regardless, the wiring cannot be changed.  The autism cannot be separated from the individual. 

The meltdowns, the sensory reactions, the supremely picky eating, and in some cases the seizures, the sleepless nights….none of that is the autism.  Yes, in many cases the autism has a close connection to these things, but these behaviors and manifestations are something altogether separate and apart from the autism.  I think that’s an important distinction to understand.

I’ve come to realize that you cannot separate the autism from the person who is autistic. 

So, when someone says that they would take away their child’s autism if they could, this is essentially tantamount to saying that they want to take away the child they currently have and replace him with a different child completely.  And, for an autistic individual, this is a heartbreaking to hear. 

However, this post is about acceptance. 

It took me a good year to reach a place where I accepted Ben’s autism as a part of who he is.

I think it’s important to truly understand acceptance.

This is what acceptance means to me.

Acceptance is more than just awareness. 

Awareness is important, but we can be aware of something without accepting it.

Acceptance isn’t giving in nor is it resignation.  It’s not hanging our heads in defeat.  It’s not saying, “I give up.” 

Just because I accept and even embrace Ben’s autism does not mean that I’ve stopped providing him with therapies and supports.  On the contrary.  They are necessary and important.  He needs to learn to navigate within in a world that is not naturally set up for people like him.   

At the same time, I don’t expect Ben to change the person who he is to fit society’s definition of what they want him to be.  Instead, I want Ben to learn to find his place in this world as a happy, caring, productive member of society, as comfortable as possible in his own skin.  Yet, I do expect him to be a kind, considerate, and respectful person, and I expect others to extend him the same courtesy.

Acceptance is a call to action. 

It is a realization that, now that 1 in 68 children are diagnosed with autism, it is actually a subgroup of our population.  It is a subgroup whose needs cannot be marginalized nor ignored.  These children are growing into adults who will need housing, care, and employment opportunities.  It’s not as if once an autistic child becomes an adult, the autism magically goes away.  

Acceptance is recognizing the unique gifts inherent within each individual, nurturing these gifts, and ultimately tapping into these strengths. 

Acceptance is presuming competence. 

This means that, even if an individual may not show that he or she understands something, we still must assume that they are listening and are capable of understanding.   We may discover days, weeks, months, or even years later just how deeply they did comprehend what was happening.  And also, just because a person cannot speak does not mean that they have nothing to say.  And, just because a person cannot speak does not mean that they are incapable of communicating.

Acceptance is respect. 

It is respecting the individual’s need for space, for thinking time before responding, and for different forms of expression.  It is respecting that the outside world can often be overwhelming, and offering up patience, kindness, and support when needed.  

Acceptance is listening to varying points of view.

When we talk about acceptance, we almost exclusively talk about autism acceptance.  This is an important conversation, because we still have a long way to come as a society in regards to autism awareness, let alone acceptance.

However, when we talk about acceptance, we cannot forget to talk about accepting not just autism itself, but also accepting the fact that those within the autism community are going to have different viewpoints than ours, because they have different experiences with autism than we do.  We cannot presume to know what it feels like to walk in their shoes. 

This is different from agreeing with their point of view. 

To quote Stephen Covey, we must seek first to understand, then to be understood. 

Acceptance is finding common ground in order to work together, rather than fighting in opposition of one another.  We may disagree, but if we would only listen to one another, we may find that we have more in common than we at first realized.

And, finally, acceptance is not a place that you suddenly arrive at one day.

It is a daily reaffirmation of what is truly important.

It is celebrating the person who is here, rather than trying to change him into the person you want him to be.

Some days will be easier than others.

What does acceptance mean to you?

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