Tuesday, August 12, 2014

Autism Sucks

I had an experience the other day that I just can't stop thinking about.  Not everyone knows our autism journey, and I'm sure some people look at my son and his behavior and probably think "what a brat".  Other people have seen how far he's come and everything we do to try to help him and know what a great kid he really is.  Our life with autism has changed over the years.  Some things have gotten better while others have gotten worse.  It's a constant struggle but a fight I will never give up on.

Shortly after he turned 4, our son was diagnosed with Asperger's Syndrome (a high functioning form of autism).  It didn't really come as a surprise to us as we had been doing some research since things didn't seem quite right.  Back then, there were a lot of social issues.  He had extreme difficultly entering a classroom setting such as storytime at the library or his church primary class.  It was like those old cartoons where they try to give the cat a bath and the cat has it's legs stretched out and just won't go in.  There were other things like lack of eye contact and not playing with others.  And because of his inability to understand and communicate his feelings, he did the only thing that he could, he ran.  It was classic escape/avoidance behavior.  If there is something he doesn't like, he escapes to avoid the situation or task.  When he was little this would mean running away, but now that he is older, he is much more manipulative.  He tries to talk or argue his way out of a situation.  And believe me, all that negative talk and arguing can be just as draining as chasing after a child.  This is the part of our autism journey that sucks right now.  But like other hard things my son has overcome, I know he can overcome this too.

As my son has received therapy and gone to numerous social skills classes, and we've read book upon book about how to best help him, his social skills have definitely improved.  He is now able to not only enter a classroom, but to sit next to other children and give presentations in front of the class.  He is friendly, helpful and a natural born leader.  However, these qualities are not always present, especially when he has to do something 'non preferred'.  When he is uncomfortable or anxious about a situation, he can become disobedient, disrespectful and an all around rude guy.  He will argue, call names and complain in order to avoid the situation or task.  Simple, direct orders are best in these situations, as well as don't argue back -that will just escalate things.  Most of the time when this happens at home (and it pretty much happens every day, sometimes multiple times a day) we have him take a time out in his room.  Removing him from the situation and giving him the time needed to calm down is what works for him/us.  This is not always possible when we are away from home or he is with people who have not been trained on what works for his behaviors.

 The other day my son was acting out because he was in an uncomfortable situation away from home with someone who didn't know him.  I was made aware of his negative behaviors and how it wasn't right.  My initial reaction was "I can't believe my son treated someone this way", and I felt like a bad parent.  I quickly got over that and felt bad the person had to experience this side of him.  I briefly explained he had autism which made me feel like I was using autism as an excuse to justify his negative behaviors.  I'm not saying what he does is OK.  There are consequences to his behaviors.  However, when he is triggered or put into a situation that will lead to those behaviors, he really can't help it.  He has a disability, he is unable to regulate certain aspects of himself, he doesn't think like most people and we should take that into account when dealing with him.  You wouldn't punish a blind person for not being able to see, so why punish an autistic person for their autistic behaviors.  It is a teaching moment.  We hope that by explaining to others and him that what he did was not appropriate, that everyone can learn.

Some people have no experience with autism, they don't know the daily struggles the child and parents face.  I'm lucky enough to have several friends who can relate to what we go through as well as friends who aren't on their own autism journey but are compassionate and sympathetic to our struggles.  Sharing our struggles and voicing my thoughts is therapeutic for me.  It's not just the child with autism that can benefit from therapy.  Autism affects the whole family and the whole family needs to find effective ways to deal with it.

Over the years, I've become more and more open about our struggles and successes with autism.  I love connecting with people going through a similar journey and would be happy to discuss our journey with you.  Feel free to contact me in the comments or through Facebook if you'd like to talk.

Oh, and I just want to clarify that not everything my son does is a results of his having autism.  Some of his behaviors are regular sibling rivalry or not wanting to do chores like any other kid.  It's hard to tell the difference, and either way there are consequences and things to be learned.   


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