Next steps for Miles Monkey.

Last month we finally got into Childrens' Hospital to see if Miles had any sort of diagnosis.  For the most part I did can't care about getting any sort of diagnosis for him.  I didn't want something to use as and excuse or anything that would make someone see him in a negative light.

To me a diagnosis would mean being more accessible to services.  Without a diagnosis many therapies are not covered or even offered.  A diagnosis would mean more help and more way I can advocate and be a voice for my child. 

The diagnosis he received was Autism Spectrum Disorder (ASD)  and Global Developmental Delay.  There were a few other diagnosis mentioned something to do with sensory but I would have to get out the papers to remember exactly what it was because it is also a common diagnosis with ASD.  We were also told that in the future he may be given the label of intellectual disability. 

So what does this mean for Miles exactly?  Well Global Developmental Delay means that he is delayed in 2 or more developmental areas.  For Miles it is communication and socialization. 

Autism is defined by the presence of difficulties in three (3) areas: social deficits, communication problems and repetitive or restricted behaviors, with an onset in at least one area by age three (3).  It may or may not be associated with language delays or intellectual disability.

It is estimated that one (1) in every 88 children is diagnosed with autism (and one (1) in every 54 boys), making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.  An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Autism Spectrum Disorder (or ASD) is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). 

ASD is a "spectrum disorder" because it affects individuals differently and to varying degrees. <http://www.thearc.org/page.aspx?pid=2536>

What I understand from the report we received about Miles is that he was given the diagnosis  of ASD and not Autism because he has social deficits, communication problems and some characteristic behaviors that could indicated being on the spectrum. 

Since diagnosis Miles has been able to have more therapy.  This therapy is called Applied Behavioral Analysis or ABA Therapy.  The purpose of ABA Therapy is to obtain wanted behaviors and eliminate unwanted behaviors.  For Miles the wanted behaviors are communicating, attending to tasks and more appropriate social interaction.  The unwanted behaviors are just the opposite, not communicating, lack of focus and strange social behaviors.  Wanted behaviors are rewarded with something that makes Miles happy... mostly food, or swinging or spinning. 

So far Miles loves it even though it is intensive.   He will go 5 days a week for 2 hours a day.  Then he goes to school for 3 hours a day for four days a week and 30mins of speech therapy on Friday.  The thing I think I love about the ABA therapy is that is reflects on what they have been doing at school.  It is like an extension of school with 1:1 support.  His class uses the same ABA approaches.  They work on getting Miles to 'mand' or request things he likes... as some of you know he is great at signing for CANDY.   The great thing is that without consultation with each other both the school and ABA therapy came up with the same mands: swing, movie, and cracker/candy.  

Miles second day of ABA was awesome.  The therapist decided that maybe 'movie' was not an motivator for Miles.  So she tried 'spin', and spin was a new sign.  He started using spin spontaneously and that is what the want, and he did that in one day!  She would have Miles put pegs in holes and then he would sign 'spin' and while sitting a circle that spins she would spin him, stop and he would do it all again.