Autism Story #27 – The Disconnect

"Being disconnected from the Autism Community makes me feel guilty."

After receiving a diagnosis of Autism one of the first things families look for is another child or family with similar symptoms leading up to the diagnosis and similar issues effecting the child.  For instance, a child who was delayed in their physical development often requires physical therapy intervention.  A parent who is recently diagnosed is going to look for other parents with children who were also physically delayed.  It’s part of the gauging system we all use to compare where (during normal development) our child should be.

I was no different.  I immediately looked for other families with similar symptoms to Aiden’s in hopes of getting a glimpse at what this journey was going to be all about.  I did find those families and they helped give me hope of what my life with Aiden could look like 5, 6, 7 years down the road.  In fact, looking for that support landed me here, in the blogging world.  I’ve since found parents looking for answers themselves or have turned beginning communications into friendships!

"Blogging has been completely therapeutic for me."

(That’s a shout out to you Stephanie!  Who also designed the film strip logo on the top of this blog)

In the beginning this community was my family.  I felt so at home in their presence and their inspirational stories.  The first two years of receiving the diagnosis are the hardest because you spend most of your time completely dedicated to getting all the information you need to have a complete and conclusive therapeutic and medical intervention plan in place.  In my mind, I couldn’t go anywhere or do anything until this was done.

After time, as Aiden got better and better I felt myself drifting further and further a way from my Autism family.  Slowly I was rejoining the world of “normal” (whatever that means) but still, I was going to a different place.  The stories I once found inspirational, I started to feel sad.  The stories of wrongdoings by medical doctors and school districts used to infuriate me and after two years of my own battles, I just felt tired.  The only group left of this community I felt any attachment to were the newly diagnosed families.  As traumatic as it is to receive the diagnosis you never forget and so I still felt like I could accept the role of mentor.  Outside of that, I could completely move on.

Walking away from the Autism Community left me with huge feelings of guilt.  Somehow I felt like I had an obligation to stay but in essence, I had outgrown them.  The ironic thing is, when things start to go bad I run to them immediately looking for answers to whatever the situation is at hand.  What kind of person am I?  How selfish of me to abandon their support when things are good and then use them when things turn bad?

So because of the disconnect I have with parts of the Autism Community and for this reason alone, I dedicate 30 days to Autism Awareness Month in April and maintain my role as a mentor to other families who reach out to me.

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