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It DOES Matter What You Call "It"

5/21/2013

2 Comments

 
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Memorial Day Weekend is days away...the unofficial start of summer which means swimsuit season is upon us. Ugh. For those of us who have over indulged our winter blahs with cookies, lattes and wine, we stare at the drawer where the bathing suits lie with a mixture of loathing and trepidation. We curse the Victoria's Secret catalogs that now arrive daily already promoting 4th of July sales with those scantily clad girls and their young, nauseatingly perfect, haven't yet bore children bodies and we despise them while we grab another donut to go with our latte. We hit the gym regularly for a month hoping to undo the winter damage in 28 days or less.

Once we are brave enough to try that dreaded suit on we stare in dismay at the body that has betrayed us and pray that our family has tricked us by replacing our full length mirror with one of those distorted mirrors from a funhouse. Once we accept that the reflection in the mirror is not a joke, we decide those extra lattes and cookies have made us look "healthy", not "fat", or "chubby" or "pudgy".....yes, "healthy" is the word we choose for this swimsuit season. What we call "it" doesn't matter, right? If our husband walks by and glimpses us in our annual, sucking it, stuffing it and pulling it back up where it belongs swimsuit ritual, and says, "Wow, you sure look "chunky" (versus "healthy") in that suit", it wouldn't matter right? It's "what you do" with that roll....more donuts or more crunches....that matters, not what you call "it". So say, the experts. And when your husband shows up at work with ligature marks on his neck from his near strangulation by your bandeau top, what he calls "it" to his colleagues doesn't matter either.

For years, since my first obsessive Google of the word autism, I have heard repeatedly from THE EXPERTS, that it doesn't matter what you call "it", what matters is getting Ryan the help he needs to be successful. I couldn't agree more with the getting help part, but sorry EXPERTS on The Today Show, it does matter what we call "it". Does your aging face have character or wrinkles? Are you a disorganized mess or a free spirit? Are your kids bad or adventurous? Has time made you wiser or older? What you call "it" most certainly matters, especially when "it" effects your child.
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On May 18th, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) was officially released. If you have a loved one with an autism diagnosis, you are probably already aware of this heatedly debated release and if you have a child with an Asperger's or PDD-NOS diagnosis (like Ryan) then not only are you aware of this revised publication, chances are you are worried too. According to the new DSM-5, when it comes to an autism diagnosis, there are a lot of changes in what we will call "it" in the future. The diagnosis of Asperger's and PDD-NOS are off the table when it comes to an official diagnosis. Autism, Asperger Syndrome and PDD-NOS will now all fall under the umbrella term of Autism Spectrum Disorder (ASD). Those receiving this diagnosis will then be given a severity level from 1-3, with Level 3 kids needing the most support and Level 1 kids needing the least support.  For higher functioning children who don't meet the criteria of having "restrictive, repetitive pattern of behavior, interests or activities", but exhibit "significant social communication challenges", these kids may receive a brand new, hot off the presses diagnosis of Social Communication Disorder (SCD)". O...M...G!! What in the blankity blank, blank is that?!

Needless to say all these changes has stirred up quite a controversy and I AWEnestly can't even pretend to have a clue how far reaching this effect will have on Ryan and kids like him who as of today, has a diagnosis that doesn't exist. Opponents of the DSM-5 believe rates of autism will plummet leaving many kids in the dust with no hope of receiving services or worst yet, losing services that are already in place. Parents of these higher functioning children fear this as well. Those in favor of the changes (like the experts who made the changes) believe there will be greater consistency in diagnosing children. Under the DSM-IV criteria, many kids who had similar struggles would wind up with varying diagnoses. The hope is that by combining all the former diagnoses into one big diagnosis of Autism Spectrum Disorder, this will reduce the occurence of varying what "it" is called while the severity level will ensure kids are getting the right support for their needs. Advocates of the changes also argue that more kids will receive services since the DSM-IV required symptoms to appear before the age of 3. Now children who may not show social deficits until they are older will be diagnosed and qualify for services.The proponents of the changes believe the new diagnosis of Social Communicative Disorder will capture those higher functioning kids who do not have repetitive and stereotyped interests but have deficiencies in social communication. 

My worry, is that after years of finally helping people understand autism, all these changes may lead to more confusion and possibly a big step backward.  Will lumping all these diagnoses under one giant "it" cause people to believe now that this huge spectrum has become one singular diagnosis and that all these kids who receive "it" are the same? Will "it" cause school districts to lump all these kids into one category since, after all, THE Book did so?  Add to that a new diagnosis of Social Communication Disorder that no one has ever heard of before. For kids who receive this diagnosis, my fear is that there will be a perception that SCD kids are "better off" than a child with an ASD, and we may be right back to square one like we were years ago with kids suffering from lack of support. I also worry about those with an Asperger Diagnosis who have a sense of finally belonging, a culture where they "fit in", support networks, and social media sites where "Aspies" form friendships and bond over their uniqueness. What happens when these "Aspies" are told their diagnosis is no longer an official diganostic description by those deciding what to call "it". I firmly believe that regardless of what THE book says, the term Aspergers and those who affiliate themselves with that diagnosis are here to stay. These "Aspies may take the pages of the DSM-V and wipe their....well, you know.

For worriers like myself, I have wondered where does Ryan now fall on this spectrum? I'm back to Googling and diagnosing again. After years of hanging with the wrong crowd, my BFF Denial finally skipped town only to come back for a little reunion to help me decide if Ryan has an Autism Spectrum Diagnosis, Severity Level 1 because of his "restricted" diet of meatless cheeseburgers and Jello Vanilla Pudding and his love of Hollister shirts or is "it" Social Communication Disorder (SCD) since his biggest struggle is social language? If "it's" SCD then that begs the question is my blog now a fraud? Must I title it the AWEnesty of Social Communication Disorder? And do I tell Ryan that his diagnosis has changed? Will it matter to him what "they" call "it"? My poor, tired brain. I bet that DSM-5 has a sound, irrefutable "it" for me.

As Ryan's mother, what "it" is called while I snuggle him, grocery shop with him and discuss the latest weather pattern with him doesn't matter, but when an insurance company needs to understand why my son needs a cavity filled in an outpatient surgical facility rather than a dentist office because there is not enough laughing gas in the world to make him chuckle or willingly open his mouth, "it" matters. What you call "it" may mean the difference for grant money to help pay for an expensive summer camp where Ryan is embraced by others wearing the same "it" while playing, laughing and learning how to make "it" understood and accepted by "us". When the school needs to know why my son may need his schedule on a computer rather than a piece of paper because his sensory system can't bear the thought of touching any type of paper, "it" matters. So, you Today Show Experts, who so glibly say, it doesn't matter what you call "it", well, I beg to differ.

I would love to agree with those oh, so certain experts, on their "it" campaign, but we are a society of "its". The proof is in the DSM-5. The gut wrenching, painful grief of losing a loved one is no longer a devastating heartbreak over the fragility of life. If that heartache goes on too long or is too debilitating, well then "it" becomes a Major Depressive Disorder. For those of us who take out our frustrations on a bag of chips, or my personal choice, a bag of Peanut M&M's, twelve times in three months, "it" is no longer a moment of weak piggishness, "it" is a Binge Eating Disorder. When your toddler's temper tantrums are so disruptive "it" is no longer considered The Terrible Twos, "it" is a Disruptive Mood Dysregulation Disorder. Yep, "it" matters.

The jury is still out on how these changes of "it" will effect children and adults with an Autism Spectrum Diagnosis. Apparently, how "it" is handled, in regards to new evaluations for kids whose diagnosis is no longer recognized in the DSM-5 to educating school officials, insurance companies and treatment providers on the new "it" will reportedly be left up to individual states and local systems to determine what is best.  Sounds to me like "it" could be a real cluster *#*#. As for THE EXPERTS who so quickly dismiss the importance of what we call "it", well please don't be offended when I sit next to you pool side at my rented house in The Hamptons (it's my blog...I can dream) and tell you that you look "fat" not "healthy" in your new Spanx swimsuit. I will just pull up Poynt on my phone and find the nearest gym where you can "get the help you need to be successful" assuming of course "fat" is an acceptable "it" in a gym at The Hamptons.
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This kid isn't the least bit worried about swimsuit season or what you call "it".
2 Comments
Chermaine Meissner link
5/28/2013 10:49:49 pm

Great article, I love "it"!!!!

Reply
Julie Sparks link
6/1/2013 06:57:44 am

I don't know, I think I am actually looking forward to it even though I have one that might now fall into the SCD category. I am curious whether my younger will be classified as a 2 or a 3. Maybe this will at least give us an answer when someone asks us "What type of autism does he have?" I ALWAYS hated PDD-NOS -- talk about a totally worthless diagnosis! Technically, that is what diagnosis *both* of my boys received and they are as different as night and day. However, you raised some good points. I will definitely have to think on that. <a href="http://juliesboyz.blogspot.com//">Life with the Spectrum</a>

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