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Health & Fitness

Luke and the Annoying Purple Dinosaur

Autism and Barney: A Caregiver's Perspective

This column was contributed by Lauren Feldman, who is a caregiver (and BFF!) to Luke.  She is a licensed special education teacher and a wonderful friend to our family.

Over the past five years, I have had the pleasure of working with Luke on his own and with his amazing family. If you met Luke at Target, he would introduce himself, shake your hand, then go on to introduce me and expect me to shake the person’s hand as well. This is a script where he always says the same thing in the same situation because it is comforting. Some of his scripts are hilarious, like when he runs around the house like Alfalfa in his socks and underwear just like in The Little Rascals.

The nature of Autism is the brain’s desire to keep the world the same.  This is why one of the hallmark diagnostic features of Autism is repetitive, perseverative, and stereotypical behaviors. Scripting will always be a part of his life. His teachers, family, and others that work with him (his “circle”) are aiming to keep his scripting under control and teach Luke when it is appropriate to disengage and when it is not. We try to help Luke learn the difference between when it is okay to script “silly talk” – as we call it – and when it is not.  Those who are non-verbal have physical scripts for their coping strategies.

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When Luke makes a new friend, he proudly sings, “make new friends, but keep the old, one is silver and the other is gold” (while acting out ridiculous dance moves) usually 9 times out of 10 the stranger believes this to be endearing and smiles at Luke.  It’s a crap shoot as to whether he keeps that friend.

Sometimes people will even keep going with him on the topic and see what else he’s got! When I am standing next to him in a situation like this I am proud of him and sad for him at the same time.

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I am proud that he wants to engage with other people and sad for him because the wiring of his brain immediately goes to THE SILLY PURPLE DINOSAUR.  Barney is Luke’s favorite TV character and he knows every word and obnoxious song that has ever come out of Barney’s mouth.  I guess Luke just connected with Barney and adapted his life to it.  Is he actually still on PBS?  OYY!!!

In Luke’s eyes, Barney is THE GREAT PHILOSOPHER OF EVERYTHING.  I try to give Luke the respect of not interrupting everything he ever has to say – which is a lot! (OF BARNEY)

As the autistic brain makes progress and begins to learn how much fun they can have with others, another part of the brain begins to compete for dominance. It is a neurological tug-of-war in the brain.

Luckily for Luke, he learned the value of relationships with others at a very young age and loves to engage with other people in many different situations.  It is and will always be a constant battle for Luke to control his scripting and other repetitive behaviors but tries new things and engages in conversations with others. When Luke is enjoying down time, his Autism ‘Veil’ comes down and he scripts to himself and jumps around.  And that’s OK… at home.

His family has done an excellent job of structuring his life where he is scheduled for activities nearly all day and is kept very busy. Luke is working on developing positive routines in and around these activities and becomes more and more independent every day. I am so proud of him!

Luke’s team of advocates has come to the conclusion that we need to help him develop positive routines at school, work, home, and in the community. He has supports that help him in all of these situations but it’s the help of these advocates by his side that can guide him to independence. Luke’s Autism will always be there. We need to help him and others living with disabilities work around the ‘Veil’ and replace these antisocial moments with social ones! As Barney would say, “What a super-deeeee-duper idea!” Uuuugh...

 

 

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