Tuesday, April 2, 2013

World Autism Awareness Day Post - "I'm not about to give up. I'm just not sure I can go on."

Today is the 6th annual World Autism Awareness Day and our 9th year with autism as a central part of our family.  Since Seth's diagnosis 9 years ago we have been on a eventful journey to help Seth grow and learn.  We have pursued numerous therapies including behavioral, educational, vitamin/mineral, detoxification, hyperbaric oxygen, equine, and music therapy to name only a few.  We have seen Seth grow not by leaps and bounds by in a slow and steady manner.  We have learned to rejoice in the small triumphs and yet are greatly concerned about Seth's future.
As Seth has grown bigger the autism rates have also grown.  When Seth was born:
  • In 2001 1 in 250 children had autism. 
  • In 2004 the number increased in 1 in 166.
  • In 2007 - 1 in 150
  • In 2009 - 1 in 110
  • In 2012 - 1 in 88   
  • In 2013 - 1 in 50
And 2001 was not the beginning of the increase. 
  • In 1976 - 1 in 5000
  • In 1985 - 1 in 2500
  • In 1995 - 1 in 500
These numbers are startling.  Some are trying to explain this increase through better diagnosis, but with the release of the latest numbers last month the CDC said, "Even allowing for more frequent diagnoses, a true increase in the number of people with an ASD cannot be ruled out."  I believe there has been an astronomical increase in the number of children with autism; the number of families forever changed by this diagnosis.  It is time to truly consider the environmental factors that are causing this astronomical rise since genetic disorders cannot increase at this type of a rapid rate.

Additionally it is key that we support individuals with autism and their families.  Interventions that help to improve the symptoms of autism are expensive and in short supply.  Waiting lists are often long both for these services and for funding to help cover therapy costs that routinely cost families more than $20,000 per year.  We have been blessed to have state funding that helps to offset some of these costs along with generous support from family and friends to help with costs that are not covered.  But I know many families who do not have these resources and are desparate to get their children help.  My heart breaks as I talk with these families.

The toll that autism takes on a family is difficult to express.  We try to find the gifts in the everday victories and yet we watch Seth fall farther and farther behind his peers each year.  Attending church and his older siblings concerts and sporting events is very challenging for Seth which has meant making accomodations that have affected our whole family.  Our older kids accept that often they only have 1 parent at their events and yet I recognize the loss that is for them. 

On world autism awareness day, I don't believe that it's a coincidence that tonight at my book club we will be discussing "Dancing with Max" by Emily Colson.  A beautiful story of the joys and challenges of raising a child a with autism that I would highly recommend.  I will close this post with an excerpt from the book that beautifully articulates this journey.  These could be my words; these have been my thoughts.

      "It would be easier if I had a guarantee that everything would get better, if I knew the struggle might even end at some point.  It could end like trials do for other people, everyone gathering around celebrarting, throwing a party with hors d'oeuvres and cake.  Everyone noticing.  But that wouldn't be our story.  Tomorrow I would have to find the courage, the endurance, to breathe deeply and simply start again, even if no one noticed.
       Most of the time we're great.  I love Max desperately, as if my body were being turned inside out.  It's an unquenchable love that takes up most of my existence.  Max is not a burden; he is my great gift.  I'm not about to give up.  I'm just not sure I can keep going."