This past week I lost a very dear friend. He has passed away. I have had the honor to grow with him and his family over the past 10 years. He had a very kind, gentle personality and he was very loving, especially to his mother. But, the world refused to see him that way. At times it was hard for me to see him that way, and, I know, sometimes it was even challenging for his family to see him that way. You see, he wore a disguise. We call this “disguise” autism [see note].
When fully cloaked in Autism, many children, like my friend, can possess character traits that the world is so ready to despise. The world so quickly focuses on and judges the outward behaviors: hyperactivity, funny sounds, strange obsessions, anxiety reactions, abnormal body movements, lack of communication, “obvious” unwillingness to be social. The verdict so tragically passed down on these children, can be summed up in one word: isolation.
Isolation is a common way to deal with “outcasts.” I can’t help but think of how lepers were treated in Biblical times. If lepers, for whatever reason, had to come near people for one reason or another, they had to shout, “UNCLEAN, UNCLEAN!” They were put into isolation and treated as social outcasts and the lowest life form on earth. They were unlovable. No one would even touch them. As if they had a choice in the matter! There were of course, as there always are, some people in the community who made sure that their needs were met. That is, they saw through the leprosy “disguise,” and saw people, men and women who had basic human needs: food, water, clothing, and dare I say it, love. These comforters were able to see past the external leprosy and brought food, clothing and more, they brought comfort too. It is one thing to have a medical illness that may be communicable, that does require some degree of separation. It is totally another to completely isolate an individual. Many families today have children not with leprosy, but autism. And like individuals with leprosy in Biblical times, they are often isolated from friends (they don’t come over, they don’t even call), other family members, their places of worship, and even much of the medical system, which I personally find abhorrent. So, it is usually up to “warrior” moms and dads (yes, even dads!) to fight for everything these children need.
My friend’s family did just that. They fought diligently with the school system. “Mortal combat” with the insurance company and the local health care providers…or more aptly, non providers, to obtain the medical treatments he so desperately needed. There were some modern day comforters that made this journey tolerable, thank God for the comforters! There were times though, his parents wanted to give up. They did not know just how much more they could take. The violence, obsessions, mannerisms, ill health, and lack of social support would take its daily toll on not only the parents, but siblings as well. As my friend grew to over 6 feet tall, he could be quite challenging at times. Ah, but my friend, who has always been a good teacher (usually in patience!) taught us to look for the rare moments when he climbed out of his autism cloak. Wow! What a guy. He gave us glimpses of a truly beautiful boy. Glimpses for me, and the rest of the world. But his mom saw this daily. She always saw her beautiful and truly loveable son, even when totally shroud in horrific behaviors. Don’t get me wrong here, she did not like the behaviors at all, but she truly loved her son.
Well, my friend is with God now, in a totally new and perfect body set up for eternity. For so long, we have waited for him to talk, to speak his thoughts, to share. Now, he is patiently waiting for us to come and speak with him. We will see you soon my friend.
Note: A disguise can be anything which conceals or changes a person’s physical appearance. I am using this word to describe how certain autistic behaviors can hide or conceal our children’s personality, a metaphor.