BEFORE YOU READ ANYTHING ELSE:

Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.

Last paragraph from the article below

***WARNING: LONG POST IS LONG. IF IT’S TL;DR, I UNDERSTAND. THE ABOVE IS THE MOST RELEVANT PART.***

Yesterday’s NYTimes article is definitely not the worst propaganda to come out about how we’re either overdiagnosing, or how DSM-V will kill kittens, or how it’s all about the money, but it seems to have created the largest response I’ve seen yet.

I want to paint you some pretty pictures to illustrate why Volkmar’s “data” from his “study” (link not to the “study,” but where it’s referred to as a study)that no one has read nor has it been published nor is it going to be published.

(SOPA and PIPA supporters: I do not have permission to reproduce this photo so I’ve kept the link to where I got it rather than putting it on my own server.)

Hey look! We have some apples.

Red Delicious (Autism), Granny Smiths (Asperger’s), Yellow Apples (PDD-NOS), and Others (Rett’s and CDD)

Data:

Red Delicious Apples are: Red, Have a Peel, Have a stem, Has several seeds at core.

Granny Smith Apples are: Green, Have a Peel, Have a stem.

Yellow Apples are: Red and Yellow, Have a Peel, Have a stem.

(I can’t tell you data used has not been released.)

Diagnostic criteria match the above.

Diagnostic criteria change.

To be an apple:

1. You must have a peel and a stem. (You have to have communication challenges.)
2. You must have seeds. (You must have social challenges.)
3. You can either be tart, sweet, or somewhere in the middle. (You may have restrictive behaviors, interests or activities.)

Oh dear. It seems that Granny Smith Apples and Yellow Apples no longer meet the criteria to be called apples.

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I can’t confirm this as stated above because the data and the way it was utilized has not and will not be shown. Volkmar has said he will be doing a large sample later in the year, but that will result in different results because it’s not the same data points.

But let’s look at the discoveries made about Autism Spectrum Disorders in the past 2 decades (19 yrs to be honest). Heck, let’s look over the past decade. Did you know we can see signs of Autism sometimes as early as a year and a half? 10 yrs ago, most children weren’t diagnosed until 3-6 yrs old unless they showed multiple traits. At that point, we didn’t see traits in children diagnosed with AS until anywhere from 6-18+. Now I know parents who have had their kids diagnosed with AS at age 2-4! Why? Because we know even more about Autism, how it presents, and numerous traits that were considered “fringe” 20 yrs ago (Sensory integration, anyone?).

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Does that mean there aren’t things wrong with DSM-V? I don’t know. I like what it has become. I agree with multiple people that it doesn’t show all of our traits, but I don’t think that kills the criteria. Have you seen the criteria, btw? That was a lot of the big scare yesterday.. Apparently a lot of people were trying to access the DSM-V page because it took me over half an hour to even get to the home page, let alone the ASD page. Take the currently listed criteria:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

 

I can see some people complaining about D, but don’t really care about that as I do believe that ASDs are disabilities. I know some people are worried about going back to the late diagnosis that A will lead to, which I think is more than appropriate. I know adults are worried that because of their ability to mask means they can’t get a diagnosis, but that’s not really a *new* problem.

Like I said on a list today:

It’s no different than teaching an Autistic child to mask. Does that
mean they’ve lost their diagnosis? (I know, that’s a question most
parents will argue.) The only difference is that I wasn’t taught by a
behaviorist, OT, SLP or other professionals.

Except, when it’s taught by professionals, it’s usually called “coping strategies” or “intervention.” But as said, this is a current problem.. And I think it has to do more with professionals not understanding adults can learn coping skills and sometimes there is not going to be any data to prove that they originally didn’t have those skills. These are what I call BAD PROFESSIONALS. Of COURSE an adult doesn’t present like a child, because, they aren’t a child!

Basically, THE SCARE IS OVER NOTHING. The release sent out by GRASP even shows how it’s important to look at ALL the details. (Ya know, like that the current criteria listed was listed January 26, 2011… and we’re currently in 2012… and we haven’t even hit January 26 yet.) I know not all the details are available, but I think that’s due to the fact that Volkmar is INTENTIONALLY using scare tactics. It’s not like his views on the subject of removing Asperger’s aren’t clear.

If you haven’t heard of The Loud Hands Project, then I apologize for not telling you of this wonderful project that is part of the Autistic Self Advocacy Network‘s new programming for 2012.

Loud Hands Launch Video:

As you may notice, the IndiGoGo campaign has officially exceeded the goal. However, that does not mean that more support isn’t needed. The original goal was set to meet the cost of the Loud Hands Anthology (submission guidelines). That means the Anthology will be made! This is great, but Loud Hands was never meant to stop there.

Check out what your donations will do past this:

Benchmark 1: $15,000 “About us, without us”

 

“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.

 

Benchmark 2: $20,000 “Welcome to the Autistic community”

 

• With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012–Autism Acceptance Day.
• Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.
• Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

 

Benchmark 3: $25,000: Connecting to Community Together

 

To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

I’m rather excited about all of this. (And not just because I’m not responsible for any of it. ) We have long needed a way to show what and who the Autistic community is. To define who we are. Loud Hands is meant to be just that. Not only that, but a way of introduction for those who come after. I’m extremely excited and I look forward to what’s to come.

Once upon a time, there was a girl who despite all her abilities could not make sense of the people around her. She was hopelessly lost until she made the one friend who stood by her side from grade school through high school. When they parted, the girl, now a young woman, was hopelessly lost again.

She went to college, but she failed to do daily things, like eat, or laundry, and even most of the time homework. She suffered a lot, from stress that caused great migraines and bouts of sleeping. She met people she finally understood, but by that point it was too late and there was little she could do to regain her stepping.

She found herself pregnant, homeless and in a bad relationship. She gave up on finding her footing and moved back with her parents who were also hopelessly lost.

She met a man half the country away. This man fell in love with this now pregnant young woman who had failed in her relationship, in her studies and generally at life. He woo’d her, despite the fact that she didn’t know he did. And when all else failed, told her of his love for her.

After meeting for the first time, in person, only weeks before this young woman gave birth to her son, they both knew they wanted to see if they could have a life together. That man moved half a country away to be with this woman and her son. But soon he lost his own way, unable to find work, he decided to move back home, and so risking all, the woman moved back with him.

Now nearly 8 years later, this mother to two, this Autistic person, knows that sometimes in life you must risk things to gain so much more. But that does not mean things have been easy.

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This week, my husband and I celebrate our 7th wedding anniversary. If it weren’t for him, I doubt I would have ever found my way. And I thank him deeply for all he has done for me and our children.