12 Surprises Living with a Child on the Autism Spectrum

The word Autism is everywhere!  Five years ago, my now 9-year-old son was diagnosed with an Autism Spectrum Disorder.  No textbook definition could truly portray what a family living with Autism goes through.  Picture yourself on the most exhilarating roller coaster ride of your life.  Autism is exactly that, an emotional roller coaster with sudden twists and turns, the highest highs and lows you could never prepare for.

The following are the most difficult and rewarding surprises I’ve encountered on this journey.   

#1 - The diagnosis process is a very grueling and lonely time.  From very early on, I knew something was different about my son.  It was no surprise the day he was diagnosed, and I was ready for the help.  That’s not true for every family.  Many go through a grieving or denial stage, much like you would when dealing with death.   You may feel alone and some of those closest to you may not be your biggest supporters through this time, but most eventually become accepting after they process through this life altering diagnosis.

#2 - Evaluations can be an extremely frustrating road, with a lot of waiting and stacks of forms to fill out.   Some of the most highly-recommended Specialists have a wait list of over a year.

#3 – It will get harder before it gets better.  Through Wrap Around services (in home and community, one-to-one therapy), my family learned how to deal with the behaviors my son exhibited.  As he fought the changes and his behaviors got much worse, his therapist supported me as we implemented new rules for behavior modification.  Eventually, he learned the skills needed at the time and the results were well worth the fight.

#4 – Autism should never be used as an excuse.  Prior to diagnosis, I never knew how to punish my son’s unacceptable behavior.  I treated him different from my other children.  I wasn't sure what he understood.  Looking back, it was a big mistake to let him have that kind of control, but it was fixable through the behavior modifications. 

Surprise #5 - I learned to be okay with crying.  In fact, it has made me stronger.  The most frustrating moments often lead to huge breakthroughs for my son.  It gets hard sometimes, but I know if I don’t push him to learn new skills he will not be the best he can be.

#6 - The simplest achievements are the most rewarding.  When my son made it through playing his clarinet in the school concert, I was tearing up.  Big crowds, loud noises, and new experiences can send him into shutdown mode.  He showed himself that he could do it.   I've come to appreciate all those simple things, and use these moments to reinforce to him how great he has done.

#7 – What others think really doesn't matter, people say this all the time, but the reality is most of us crave acceptance. I've had to get over some embarrassing moments.  My son has had his share of melt-downs in public -- sometimes in front of large crowds and people I know.  I need to be able to react to the moment and not focus on those around me.   This is when my son needs me the most, not my ego.  Sometimes grown people will comment or give looks when these things occur.  In my opinion, they are acting out of ignorance and unintentionally being emotional abusive towards my child.  It’s not in my child’s best interest to react to these insults in front of him.  I will not keep my child home to avoid these moments.  He needs and deserves to learn how to act in public, regardless of how many times it takes him to learn.  These moments pass.  With Therapy and coaching, my son has mastered many new skills and that’s what is most important.   

#8 – There is a wealth of information and friends available to families in most every type of situation.  I am amazed at the number of supportive friends I have made through autism.  Those families, who understand and live through some of the same struggles, are not only a shoulder to lean on, but also a wealth of information when we have gone through new trials.   I am blessed by those I have gotten to know because of my son’s Autism. 

#9 – Autism is not all bad.  My son is creative, funny, and intelligent.  It’s not that this comes as a big surprise to me, but his autism makes him special.  Let me say it again, it’s not all bad.  It’s not all scary.  Some of the gifts he’s received along with Autism are downright amazing.   His ability to see things differently is special.  His ability to focus on a specific subject, even when all the other kids want to talk to each other, is a gift.  His vast vocabulary exceeds many adults.  These among many skills will serve him well one day.    

#10 - I never knew I could be so strong.   There have been ups and downs.  When things get hard and I’ve had to fight to get what I think is right, I’ve done it.   Being an advocate for my son is something I never pictured myself strong enough to do.  But, I’m doing it and I think I am doing it well.

#11 - Autism affects our entire family.   This is one of the toughest parts, one I was not prepared to deal with.   We love all our children equally, but our child on the Autism Spectrum certainly takes more time in phone calls, appointments, and in preparing him to be an adult.  There have been times when we have had to leave places; this can be sad and frustrating for siblings.   The reality is that life isn’t always fair.  In our family, we try to take date nights with each child alone.  We discuss any frustrations we know they are having.   We do our best not to focus on autism all day every day.

#12 - I was hugely surprised four years after his diagnosis when I finally went through being angry at Autism.  Until that moment, I was not bothered by the typical stemming (for example, spinning, flapping) my son would do.  I was angry at everything.  I was angry at the silly way my son sometimes walked.  I was angry about him not being able to tell me what was wrong.  I was angry that I had to keep going to meetings at the school.  I was angry at being angry.  I felt like a terrible parent.  Looking back, I know it was a normal reaction and it was just a short blip in time.   I wouldn’t want those feelings to come back, but I have grown in ways that I can’t even express.

Lastly, I wanted to add that finding me, taking time to be me has been a great release.  I started writing in journals and private blogs about my feelings and it helped bring ME out, which in turn has helped my family to become closer.

As autism is a life-long disability, I am sure new surprises will pop-up, but I have high aspirations for my son.  I know he will be able to live a full life and someday, hopefully, he have his own little family.  There are positives with the negatives and everything is about how you choose to let it rule your day.

Please if this has helped you in anyway as a parent, person with an autism spectrum disorder, or just becoming more autism aware, show some love and leave a comment.