Sunday, 08 July 2012

• Is There Unity in the Autism Community?

  
  
  @Joel Manzer from Autisable wrote a post called “Defining Unity Within the Autism Community” where he asked these questions:

  1. How could we convey autism to the general public better?
  2. How could we help one another as a community?
  3. What could be shared that could help better define what life is like with Autism?
  4. Do you think we are failing in our message to the general public about Autism? If so, where and how could we improve?
  5. What do you think Organizations should do to improve Unity within the Autism community/Special needs community? 

  This post is in response to his questions.  

  I have been on the autism trail for almost forty years.  My son, Brandon is thirty- nine years old and we did not find out he had autism until he was thirty-two. Yes, I felt relieved to finally understand why he did the things he did and it gave me the compassion that I had longed for. 

  Unity does not seem to exist in the autism community.  There are cliques, groupies, and places where much discussion about good versus evil goes on every single day.  So many people along the autism trail feel their way is the only way.  The bigger organizations seem to dismiss the smaller organizations and often it comes down to their priorities and how much money one can raise over the immediacy of helping our children today. 

  There are so many wonderful grassroots organizations that do everything they can to help the children and their families, but getting up and running and off the ground is nearly impossible for most of them.  Assistance from many of the larger organizations does not seem to exist.  I still do not understand why.   Many of us parents are here to help and be of service however organizations are very tight knit groups and outsiders are not welcome. 

  The truth will prevail.

  As long as we continue to disagree, argue, bicker, and dismiss one another, the longer it will be for the public to take us seriously.  Are we back in high school where this type of behavior is part of growing up?  No, we are all adults here. I always believed we were all working together to help our children live the best life possible.  But unfortunately, I was wrong.  That hurts me deeply.  Each and every day we ignore this behavior or condone it our children and their parents are losing out and losing precious time.

  Beware! That is the word I would use to best describe the autism community.  As parents, we have enough to deal with so adding the inability to trust, support and help one another is an unnecessary and unwanted addition.

  If we want the public to take us seriously, we need to get along and communicate from our hearts and mean what we say and say we mean.  No double talk here. We need to be direct, honest, sincere, and clear.

  Trust!  We are going to need to trust one another along the autism path. Many parents are spending precious time trying to figure out which way to turn and who to trust. It is more work than they need or have time for.

  Why are we misunderstood and not taken seriously in the general public?  We are misunderstood within our own community.  How can we expect others to understand us when we don’t understand one another?  

  Our community talks about cures, healings, diets, vaccines, and changing our children.  There are many of our autistic adults who like being autistic and don’t want to be changed. We have many different modalities going on at any given time on social media. This can be a wealth of information albeit confusing and overwhelming for many parents who often don’t know which way to turn. 

  What do you think Organizations should do to improve Unity within the Autism community/Special needs community?

  Organizations must be real and trustworthy.  They must always keep in mind that helping the children is their number one priority and goal and that is not always the case.

  I have been silent for many years because quite frankly I have not wanted to rock the boat and I rather not spend the time on these issues. But when Joel Manzer from Autisable wrote his blog looking for answers to his questions, I felt it was time to address the situation.

  I am an autism motivational speaker and an independent living coach and I love what I do. I am on a mission! I share firsthand experiences, information, and HOPE.  I pride myself in being authentic and that is what parents are searching for. I connect with likeminded people and spend most of my time helping parents to help their children reach their full potential.  It fills my heart and it feels great! 

  The parents on the autism path are the real deal too and they do not take no for an answer.  They are dedicated in helping their children succeed and that is what they focus on daily.   

  I love the autism path and the parents who are on it and if I had to do it all over again I would be sure to choose this same path again.  At a recent conference, I was giving a speech and a gal in the audience asked me why would I choose the same path again?  I thought for a moment before answering her question and tears streamed down my face.  I began to relive those thirty-nine years over very rapidly in my mind. A minute later I composed myself. I told her that this was one of the most difficult paths and at the same time one of the richest paths in the world. Not only do we have the opportunity to help our children grow and develop but in order to do that we must change and grow ourselves.    

  Every autistic child and adult silently demands that those of us touched by them grow and develop too, just as we are asking our children to do. This is not a lesson in changing others, but more of a lesson in accepting our children and their ways just as they are. None of us like it when people try to change us and unfortunately, that is what society has been trying to do since the name "Autism" has become a household word.  

  When we are able to appreciate that ever person is entitled to their opinion and every decision we make as parents must be backed up with sound information and knowledge then we will be able to move forward. In order for this to happen we must be able to work together.

  Since autism spectrum covers a wide range of challenges we will never agree on one-treatment fits all, nor should we have to.  We need to be respectful of one another and the choices we make. We must make sure that our way is not the only way and if someone tells you that I would recommend you walk the other way. 

  What we all can agree on is that we can learn from our autistic children and adults.  They are honest, caring, and kind human beings.  They are here to make this world a better place.  Because of our children and over time those in the autism community will be forced to learn how to get along with one another just as our children have taught us.

  Our children will become part of society and we will see them shine as they teach everyone around them one of the most important lessons of all… ACCEPTANCE! 

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