Friday, October 5, 2012

A Cure For One or A Cure For All?

You’ve heard me talk about this before but it’s a subject that continues to bother me….all of the division and fighting that occurs within the autism community.  Yes before you ask, I’ve been reading article comments…again but the positive here is that it continues to make me thankful that either no one other than my husband really reads my blog or thus few comments or my readers are friendly accepting folks. 

So the argument seems to center around the viewpoint of autism as either a personality issue that doesn’t need cured or autism being a neurobiological disorder that does need a cure. There seems to be little acceptance of either’s viewpoint by the other side.  I think this is one of those areas that makes autism so unique from other “issues”—it’s a continuum and that continuum is huge. On one end we have individuals who have little to no cognitive awareness or ability to communicate and on the other end we have individuals who may struggle with interactions but are essentially able to function and communicate.  And then we have everyone and anywhere in between. Some individuals with autism will need to be cared for their entire lives, some individuals are a danger to themselves or others and have to be institutionalized, and some are able to function in society with support systems in place. And then we have everyone and anywhere in between. The differences that exist on the spectrum are really unlike any other condition that I can think of.  

That begs the question if everyone on the spectrum should be diagnosed with autism.  That’s a question well above my pay grade but unless something drastic changes it looks like the diagnostic code manual for next year will have all of those individuals continuing to be lumped under one diagnosis—autism. It doesn’t appear then that the fight over what autism is and how it should be treated (or not) is going away anytime soon. 

I think we could resolve this fight though—it does however require everyone to own their own form of autism and opinions. See, we are all seeing and experiencing autism differently and that’s the only perspective that we can speak from.  We need to validate and respect autism experiences and perspectives that are different from our own. 

Here’s the thing: I’m happy for you if autism is a personality quirk or an essential part of who you are, and that you are able to use what autism has given you to your advantage. Maybe you are particularly creative—that’s awesome. Maybe you are an engineering genius—that’s awesome too. Maybe you identify as being autistic like some identify with a life style or ethnicity—again I respect that as your choice. But you have to realize that if you are able to self-identify then you have a level of cognitive awareness and self-expression that not everyone on the spectrum has. I hope I see you on my college’s campus, I hope I hear your dorm roommate horror stories, or see you stress over what to wear to your first job interview. I hope to one day watch a movie of your life story and how far that you’ve come.  I appreciate and value your perspective but again I need you to realize the cognitive awareness and communication skills that all of this requires.  You don’t need “cured” and I’m certainly not going to ask you to “take your medicine” if a cure comes along.  Being cured is usually a decision that individuals decide to make or not. But again you have the ability to make that decision.

I need for you to consider another point on the spectrum.  In my son’s world, autism means that he’s terrified of the world. The world is a source of sensory overload that usually takes him days to process.  We frequently hear questions one to two weeks after the event/incident has happened. It takes him that long to mentally process and find the words to try to express himself. That doesn’t work well in an educational setting where you are presented with ideas and then expected to process them immediately or during emergencies where split second decisions determine life or death.  Need more examples: this is the 4th year that Caden is in a full time school environment and it is the 4th year that learning to use scissors and identifying all of the letters of the alphabet are on his IEP. We are still working on a verbal response rather than a growl when someone says hi.  We’re still working with the sheriff’s department to obtain Project Lifesaver for Caden because we are learning that as he gets older he is aware of more but that he still isn’t able to process it all; this is all increasing his flight risk. At the age of 6, Caden still doesn’t use the bathroom by himself, rarely feeds himself with utensils, and frequently sleeps with us because of nightmares that seem to derive from anxiety that he doesn’t have the words to express. 

Don’t get me wrong---there are more positives to Caden than I have the time or space to list. He’s a beautiful little boy with a quirky sense of humor who loves all things Angry Birds, Pokemon, and Super Mario. Although he can’t express it verbally, his love for us is evident in his eyes as well as the spontaneous hugs that he reserves for his best friend and service dog Elf.  I can also honestly say that I’ve never seen a kid want to learn to read as desperately as he does and his hard work is certainly paying off as he is a 6 year old who is doing some pretty amazing work with multiplication. 

I’m not sure where he is on the spectrum although I know he’s not on either end for sure.  His diagnosis was for autism spectrum disorder with the therapists ranging in opinion from classic autism to pervasive developmental disorder-not otherwise specified.  Whatever you call it, he struggles with autism every day. And more days than not those struggles cause a lot of heartbroken tears for all of us.  I absolutely despise seeing my child scared or anxious or trying so hard and not understanding why his friends moved on to first grade and he didn’t. 

So would I cure him? It depends on what the cure was—I’d make the same weighted decision that I make for every other medical decision. I’d look at the pros and cons and if the treatment was safe I’d probably jump to sign my consent.  Notice I said my consent. Caden doesn’t have the cognitive ability to make those kinds of decisions nor does he have the communication skills to express his wishes—I’d do just about anything to give him that ability.  I want nothing more than for Caden to be happy and to be able to live an independent life wherein he makes all of his own decisions—just like I wish for my neurotypical daughter. Without a cure I’m not sure we are going to get there though.

I don’t think either experience with autism that I’ve just described is the right one or the wrong one. They are just different experiences based on different points of the spectrum.  Recognition and support of different experiences, different spectrum points, and different decisions would go a long way in bringing the autism community together.  I’ve said it before and I’ll say it again—if we can’t figure out how to accept each other, how can we possibly expect the outside community to accept us and/or our children?