Monday, July 30, 2012

Visuals and Autism

Visuals when paired with the word autism is the key that changed my son's life.

Photo credit:

When Danny was 3 years old, I was asked which form of communication I wanted to teach him.  He wasn't using words - much less understanding them.  


A word that I have learned to respect throughout the years.

My options were either pictures or sign language.  I chose sign language.  Thinking he wouldn't look so "awkward" signing throughout his life vs using pictures.  

I was so wrong.  He never fully grasped the understanding of sign language.  He would imitate the hand gestures but truly did not pair the gesture with meaning.  

I read about PECS - Picture Exchange Communication System (as developed by Dr. Bondy and Lori Frost).  The real PECS people were holding an intense 6 week summer camp to teach communicating with pictures.  Danny was so selected to attend the first ever Intense Summer PECS Training Camp.  I couldn't wait to learn the process and see how Danny would do.

Six hours of driving (three hours each way) for an intense three hour class teaching the various to  phases of PECS.

Most kids caught on quick.

Danny wouldn't even allow me to be out of his line of sight.  He was scared to death and screamed for an entire week.  The instructors finally allowed the door to be open with me sitting in the doorway with my head down.  This would not give Danny any attention, but only to reassure him that he was safe.  He screamed and screamed.  Once he started, it was almost impossible to stop.  It was dreadful.  I remember my heart pounding and hurting like it was only yesterday.

He wanted the cheese curls but could not pair the understanding of the picture exchange to receive the cheese curls.  Someone was behind him prompting him gently helping him grasp the 2x2 square laminated picture of a cheese curl and helping him to release the picture in the other communicator's hand.  That person immediately said "cheese curl" smiled and gave him a cheese curl.  This went on hundreds, no thousands of times.  Danny would not pick up the picture independently even though he wanted cheese curls.  He would look at it as if to say "ok, I looked, now give me a cheese curl".

Reinforcers were all around the room, just out of reach for the child.  A reinforcer is something that a child wants and is willing to do something for.  If a child wanted a reinforcer badly enough, they would need to hand the instructor a picture from their own PECS book to receive the item.

Danny was only interested in cheese curls and a Raffi book.  Danny wanted the "book" but was so frustrated with the handing of the picture to receive the book.  Tears would roll down my face in my lap and my head would ache from trying to sit still and hide the raw emotions of the failed attempts.

Finally, one day - the instructor that was tirelessly working with him "Mindy" realized that he wanted the cheese curl while he was looking at the book.  She placed both the pictures on the front cover of his PECS communication binder and he immediately gave both pictures to the instructor.  He was told "cheese curl and book" and was given both.  My son wanted to chew cheese curls and look at the picture in the Raffi book all at the same time. He couldn't communicate that he wanted both.

PECS was difficult for my son.  Throughout the 6 weeks, my son bit another child, threw up on the one and only Dr. Bondy and screamed his head off for all the parents to hear!  No one talked to me.  I was "the mom from the kid from hell".  The moms huddled in the opposite corner when they were picking their angel up from the end of camp day.  I was told that every single mom asked to switch their child to the afternoon class.  They were all told "no" and hated me for it.

One day I finally told Lori Frost how horrid things were.  The doctors were telling me to place him in a residential facility and I couldn't.  He was my son.  I would rather die than place him in an institution.  She listened and heard me.  She and Dr. Bondy worked tirelessly with my son.  It was almost as if they had a silent mission to "save him" and keep him in his home.  

I can tell you that if it weren't for these people - I am unsure as to what would have been.  Danny did learn.  He learned to communicate with pictures.  When he started to learn language, he would regress and lose it eventually - the pictures were always there for him to 

The visuals taught him the process of things.  How to wash his hands, how to get dressed, how to go to the bathroom independently (except for #2).  The pictures taught him "why we do things" and the "proper way of doing them" like going to the dentist.  They also taught him that if something went wrong, he could handle things this way or that way.  Choice-making was taught.  Danny learned to read.  Visuals gave my son his dignity back.  

I was reading a blog post and  her classroom was jam packed with visuals (the proper way).   I found myself smiling, nodding and couldn't stop from commenting.  If only the others coming down the same path to understand and apply visuals properly.  It is a lot of work - but so important for our kids.

Here is the original blog post:

I have learned from my son the hard way. He is 18 now. Danny was diagnosed at the ate of 23 months and visuals were and continue to be the key to his success. When he doesn’t understand our world, visuals make sense to him. I have been making visuals for 16+ years now. Exhausted, burnt out, beyond my physical ableness are just a few things that I can put into words. I wanted to jump in and express no matter how light or severe the autism is – visuals are the key. Aspergers, High functioning autism, PDD, PDD-nos, Autism, Sensory processing disorder, Severe autism, Autism with a dual diagnosis (including mr) – visuals are the key. For my son, I want him to rely on a visual book when taking a bath (using the same words and pictures) so that when I am no longer here – he will only have to rely on an individual to help him through the parts he needs help with. No new confusing language or someone trying to do something different or skipping steps – the visuals ensure that the process is kept and maintained – for his dignity. I’ve thought alot about when I’m no longer here (I was diagnosed with cancer a few years ago)…. the visuals need to be put into place so that his dignity is the utmost importance. I hope that the future statistics change – when my son was diagnosed, they were one in every 10,000. Autism was rare – now they are one in every 100. When you have a child who cannot speak – the communication has to be taught – the visuals are key – the earlier the better – first start with teaching understanding of our words paired with visuals – then PECS – communicating with pictures for their needs – then directives – social stories – expectations – reading – etc – the possibilities are endless with visuals. What was told to me throughout the years to place my son in an institution b/c of his severity level – I fought like no other. Today – he does have severe autism – and profound mental retardation – and yes traumatic brain injury from a seizure he suffered two years ago – buttttt – he is a well behaved young man. No behaviors – none – the doctors are amazed. I home schooled him. I have visuals everywhere – when there was something he did not understand and there was an identifiable antedecent – a social story was written with visuals and read to him (over and over again) with other ways to handle things. More often than not – it was always pain or discomfort that brought on his behaviors. But it is the visuals – that has been the key. He is not in an institution. He is my hero. He is my best teacher in life. He taught me how to love like no other. He taught me to fight in what you believe in. 

Yes – visuals are the key.