Saturday, August 17, 2013

Diagnose Scattered Members: DSM and Me.

I don't have a hearing device or glasses.

I don't have a visible support like a wheelchair or a cane.

My body type does not obviously disclose my disability. 

But If I see someone wearing a puzzle piece ribbon,
I know what it means. 


I'm part of a community connected by intangible things: behaviors, diets, shared failures, and shared strengths. It's not a secret handshake, per say, but there are some specific characteristics relating to being in the group. Sometimes it's almost imperceptible rocking or a small repetitive motor function like running a thumb around an invisible coin or listening to the same song on repeat every day while driving to the office. These are some of the coping strategies we, in the Autism community, use on a regular basis to blend into the neurotypical ocean.

Being Autistic, I can spot another person on the Autism spectrum pretty well. They bob as buoys in the ocean, easily spotted by other buoys. Sometimes we only smile to each other shyly across the ocean saying everything in a simple gesture; "You are not alone and I understand." Other times the tides are right and buoys get the chance to float together. Although the current affects every buoy differently, it can feel comforting to bounce against another in some of the storms of life. It helps to know, "There are other buoys right around me and they are still floating."

The internet is abuzz with the attention brought to Autism by the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5). In the new edition Autism Spectrum Disorder will be a combination of 4 previous separate disorders. Autistic disorder, Asperger’s disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) will all be merged into the new Autism Spectrum Disorder.  The diagnostic criteria will require a deficit in social interaction as well as some restricted repetitive behaviors, interests, or activities (RRBs).

There are a lot of reasons why this is upsetting people. Although many individuals may easily transition to the new diagnostic label, it may create complications for a few. People are concerned with insurances and receiving proper mental health coverage and losing the various supports depended on for years. The biggest reason it's upsetting people has not really been mentioned by the media because it's a difficult subject.

In American Sign Language, there is a distinct difference between Deaf and deaf. The first word is relating to the Deaf culture and the second is relating to the hearing condition. There is no difference between Autism and autism because there is no real Autism culture. I can easily argue that Autism culture is one of the most segregated of all disability cultures. The disconnect between the in-groups can be compared to some religions; Everyone is reading the same paragraph but interpreting different ways.

I identify as Autistic but I have also carried the labels of Asperger’s and PDDNOS. There is a large community that identify themselves as Aspies, those with Asperger's. These individuals take pride in their quirks and prefer to look optimistically at what life handed them. There are some Aspies are concerned that the DSM-5 change is going to cause them to lose part of their identity. I personally don't think we need to worry about a loss of identity, but we may need to go back and explain what Aspergers is in a few years.

I've worked in the mental health field for 8 years and I've meet hundreds of parents from all over the world. Some new parents  rejoice with the label of Asperger's and fear the word Autism. One label was considered a victory and the other a life sentence. Understandably, parents would fear the worst and worry for their children. Naturally this has led to some parents comparing their children, which is horrible in any circumstance. They compare their children's behaviors, diets, and developmental achievements.

Some people are concerned that the world will see their child as equal to other Autistic children and negatively stereotype their child. (Author's Note:Don't point out the irony.) Every parent wants to look out for their child, I understand this. But the division between groups gets to be a bit too much;
"How can you say my child with Autism will have a life, you have Aspergers?!" was once yelled at me across a coffee-cup strewn folding table.

I'm excited for the DSM-5 because I honestly believe it is one large step closer to uniting a divided community. At the Autism Society of America conference, I was reminded of how many different types of people are part of the Autism community. We have MDs, OTs, PTs, BHPs, DSPs, Parents, Family members, Teachers, and Us; The Autistics. Besides being just a really cool band name,  (Author's Note: I really want to have a band called The Autistics), It is really wonderful to see us being included in the conversations about us. When professionals first began talking about Autism, they were talking about us. Now years later, it is being more recognized that we are the best sources of information about Autism.

I'm optimistic for the future of the Autism community. By continuing conversations and educating people on what Autism looks like, basically there's not one "type", we are spreading awareness by creating more allies. My friends are some of the best educated people I know about Autism, in part because they deal with me on a regular basis. The future is bright and I believe we will have a big A in the future. 

I wear sunglasses as frequently as possible so I don't need to make eye contact.

My cellphone is a support tool and I need it to function.

If people see me in public with someone I'm supporting, they always think we are siblings because we "act alike".

I work with my peers to help them be the best they can be, without limits.

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