Saturday, December 28, 2013

Empathy in Autism

We all need empathy and support.  Last July, I wrote of my own need for support which I have graciously received from my support group (click here to read).  Last week, Philip was able to receive some much needed support himself.  As I learn more about autism from my son and other autistics, I am realizing over and over again how much more similar we are than different.  The common ideas that autistics lack empathy and do not desire relationships are just not true.  The problems with socialization do not stem from a lack of desire, but rather from the impairments that come from the different neural wiring that is autism.  These include lack of effective speech or communication, poor motor and impulse control, difficulty regulating emotions, and sensory overload.  In Philip’s case, his self-consciousness of his disabilities compound to make socializing even more difficult.  But even though socializing is a challenge, Philip has expressed how much he enjoys other people and longs for relationships.

This year has been a landmark year in so many ways.  Philip has been making connections with people like never before.  He has playdates with both autistic and neurotypical peers,  participates in activities such as gymnastics and Stockade (scouts) with other kids,  converses with family and people in the community, shares his ideas on his blog and responds to people’s emails, and even writes letters to his pen pal from our church.

A couple weeks ago, Philip wrote this post on Autism and Trials (click here for the complete post).  It read:

I am in pain all the time. 
I hear every sound at one volume.
I see people’s taunts and I am fearful.  (When asked what he meant by taunts, he spelled “angry faces.”)
I am each day made to feel like I am not intelligent.
I am each day made to feel I do not matter.
Often I am so terrified of senses too aroused.
I am tired of attacking stims all the time.
I each day have strong emotions that affect my relationship with each person.
I each day need someone so patient to work with me.
Each day is so hard.  
The end.
By sharing his heart, Philip was able to be the recipient of amazing empathy and support.  I post our blog on Facebook and many people commented with words of understanding, encouragement, and kindness.  I shared these comments with Philip and they made him so happy.  

One particular response was especially moving and remarkable.  I have obtained permission from the family to blog about it.  A 15-year old boy from England named Christopher has also been using RPM as a method for communication.  Like Philip, he is non-verbal.  His mother Sue shared Philip’s words with Christopher.   Letter-by-letter, Christopher then spelled out a response just for Philip.  All of this was video recorded and posted on facebook for us.  In the morning, Philip and I watched the video as we ate breakfast.  Here is Christopher’s response:

Click here if video does not show.


Sue:  And what should his mum do? 


Sue noted how it was interesting that during their conversation Christopher was having difficulty controlling his body, biting his hand, bouncing against his ball, getting up, and grabbing her.  Philip had similarly been upset as he wrote his post about his trials.  I believe Christopher’s actions were a sign of empathy.  As I watched the video, I could clearly see he was upset for Philip, that he knew what it felt like too.  

Philip silently watched the video as he ate his breakfast.  You could see he was connecting to this boy who was literally an ocean away, yet seemed so close.  After the video, I asked Philip what he thought.  He replied in spelling, “I AM EXCITED THAT SOMEONE UNDERSTANDS ME.” 

It is an exciting time to see how communication through RPM has opened the doors for relationships and understanding in so many ways.  As a mother, it makes my heart soar to see Philip becoming more and more embraced by a community who accepts, loves, and supports him.  To see Philip making friends and connecting with others near and far is a joy I could never have imagined before RPM.  It is my hope that all autistic people may have this same opportunity that Philip and Christopher have.   

* Philip's addendum- "I am each day part of a coming-together community of non-verbal autistics.  I am excited about activism.  I want to change the way we are taught.  I want to make RPM the standard."  

 Philip and his friend Kaylie making cookies

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