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Social Isolation & Autism...Everything Changes

In autism circles, we spend a lot of time thinking about how we can help our children create and maintain friendships.  Yet ironically, autism has a way of isolating us parents.  Even the most social parents may have difficulty maintaining prior friendships after their child is diagnosed with autism.   As I think back on my journey, it is not that hard to see how the isolation insidiously crept into my life.  Looking at the nature of friendships, it is painfully clear how isolation can develop after your child is diagnosed with autism. 

 During our life, we joyfully celebrate our weddings, and our friend’s weddings often with a core group of friends.  Some of us watch our friends go through the pregnancy and birth of a child. You may even have a good friend that you were pregnant with at the same time.  As your babies are born, you move into a new phase of friendship, changed by the birth of your child. You are now a mother or father. 
 As your baby grows; you immediately recognize the importance of the socialization process. As humans, we are amazed at our baby’s first smile and are captivated as we gaze into his eyes.  We anticipate our child’s first words and dream of our little baby talking. 

 But then an unexpected circumstance in life happens.  It is the defining moment when you find out your child has autism or PDD or however the physician breaks the news to you.  Break is the key word.  Something in your world breaks.  Something in your heart breaks.  And sometimes that becomes the starting point where friendships also start to show a crack. 

 When it comes to the cause of the cracks, it is hard to determine.  I cannot speak for the lost friends around me yet I suppose at the time, the word “autism” made them “uncomfortable”. Perhaps they blamed me for my son’s disorder.  Or perhaps they didn’t understand my overwhelming feelings grief and anger.  I felt as if someone had died yet no one had.  Perhaps friends could not possible understand what was happening to my son or how the autism adversely affected my son’s behavior.  Perhaps I, in my grief, just changed and could no longer focus on anything but my son.   Whatever the reasons, some friends rallied around me and some friends faded as if our friendship had never existed. 

 As I became heavily involved in therapy for my son, it became increasingly difficult for me to talk with my friends who had typically developing children.  As they would talk about how their child was sailing through preschool and enjoying endless play dates, the words would cut through my heart.  I can distinctively remember a friend’s husband telling me that his son was “so social”.  Another friend telling me that children were “vying” for play dates with her daughter.  Only a parent of a child with autism could understand how these harmless comments were so painful to my ears. 

 As a parent of a child with autism, I unknowingly isolated myself from friends.  In the first few years following the diagnosis, it was painfully difficult to talk about the autism without being brought to tears.  The reality is that after a diagnosis of autism, some friendships will stay and stay strong.  And some friends will go.  And if you let it happen, in your grief, isolation can set in.  

  How to Stop the Isolation and Move On 
 Being a proud member of the “moms with a child with autism” group, I can honestly say that I am no longer isolated.  I may be different than the person than I was long ago and perhaps more guarded, but I am not alone.  While analyzing my own personal journey, there are several things that can help parents overcome isolation.

  The first and single most important piece of advise from a Mom who has been there is to join an Autism Support Group and/or Listserv.  When Tyler was first diagnosed, the developmental pediatrician advised me right away to join a support group.  So what did I do? Okay being the imperfect and stubborn person that I am, I did not join a group.  Instead, I became obsessed with helping my son and spent every night and day on the internet researching autism treatments.  My son improved but in the process, the isolation grew stronger.

 After 6 months or so, I finally got around to joining that support group.  It was the best thing I ever did to help my son, my family and me.  I know some people will insist that they don’t have the time for a support group.  However, many support groups are simply listservs where you can participate as much or as little as you wish via email.  Since there are many listservs and so little time, I personally would recommend joining a “local” support group.  The advantages are that you get to know people in your area and get to know what is happening in your district, county and state.  This knowledge is invaluable as your child moves through the school system and transitions to adulthood. 

 It is important to note that during the first few years after the diagnosis, I couldn’t really talk to anyone else about my feelings.  In my mind, no one else knew what it was like to have a child with autism unless they had a child with autism.  These moms and dads on the listserv KNOW what it is like to have a child with autism.  And even though none of our children are exactly alike, we share a single, common thread which bonds us together.  Isolation doesn’t stand a chance. 

 Secondly, create or join a core group of parents who have children with disabilities at your child’s school.  Whether your child attends preschool or high school, it is highly likely that your child is not the only one who has autism.  Creating a group can be a simple as exchanging email addresses, phone numbers or going for coffee once a month to talk about services and what is happening in the school.  A school group will not only help you feel less alone in the district, it will help you better navigate the school system.  There have been many times I called other parents to discuss special education related situations and issues at our school. Similarly, I have helped new parents who may have questions about our experiences at the school (i.e. inclusion, etc.).

  When my son first started attending his typical elementary school, there were seven boys in Kindergarten who were on the spectrum.  Five years later, I remain close friends with several of their mothers.  We get the kids together for play dates.  Our children attend each other’s birthday parties.  We share what happens at IEP meetings.  We share what services each of our children receives from the district.  We even get time alone as adults without the kids just to have dinner and talk.  It has been an incredible experience for me to have friendships with these strong “autism” moms. 

  Third, get a hobby and have some fun.  Sometimes I think that I have no time for a hobby.  Yet here I am writing away.  A couple years after the diagnosis, I found my life consumed with caring for  Tyler and researching treatments to help him.  I really lost myself, and I do think it contributed to my isolation. 

 It was a gradual process but I eventually accepted the idea that maybe I needed a hobby. There are times in life when you are going to be at a party and not one person knows or understands about autism.  There are times when you will want something else to think of or to talk about besides “autism”.  Over the years, I have taken up writing and a few other hobbies and hopefully I am becoming better rounded and less isolated in the process. 

  Lastly, like your children with autism, meaningful relationships with others will help you to get along in life and be happier.  We are always talking about the need for friends and the importance of relationships for our children.  So again, it is ironic that this diagnosis affects our own social needs and friendships. 

 I have heard again and again from parents that most of their friends are parents with a child with autism.  While I continue to maintain friendships with people who don’t have children with autism, I highly value my “autism” friends because they just “get it”.  Also, they are accepting of me and my children without judgment.  As is often the case, acceptance of autism has become my litmus test for friendships.

 If someone is kind to my child, includes and accepts him, then we can have a friendship.  On the contrary, if the person shows any hesitation about my son or the topic of autism, I will tread lightly and most likely not pursue friendship.  I can tell you that there are a lot of people out there with typical children who don’t want my child with autism to be around their kid…as if autism is contagious.  They may be a neighbor who never has invited my child over to play with their child.  Or they may be a close friend whose husband who “has concerns” about my son so she never invites my son over to play. 

  Luckily for us, there are many accepting people out there too.  They are neighbors who always include your child and accept the disability.  They are friends who always ask how your child is doing and take a real interest in their progress.  They are the autism moms and dads who share in your journey. 

While isolation may exist for many parents with children who have autism, it does not have to be a permanent state.  Local support groups and friendships at schools can help you to get in contact again and make connections.  As there is great hope for our kids, there is great hope for us adults as well. 

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