Aspie Writer: Diagnosis Autism

Asperger’s Syndrome, PPD-NOS, and Autistic Disorder will be removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published and in effect in May of 2013. Those disorders will now be included under one umbrella diagnosis of Autism Spectrum Disorder (ASD).

To be honest I am torn about the new DSM-V. On one hand I have finally found out what has been “wrong” with me my entire life. Being diagnosed with Asperger’s Syndrome came as quite a shock to me and many others, but in reality when the shock wore off, it was a tremendous relief.

I finally had a name for my difficulties. This will not change under the new DSM-V because I am clearly within the new diagnostic guidelines for Autism Spectrum Disorder. In fact, I actually fit those criteria more accurately than the previous.

The part that concerns me most is the removing of the name, Asperger’s Syndrome. I understand that we as people are not a name, but it almost feels like invalidation. For 38 years I did not exist, no one saw my autism/Asperger’s, and now on some level I feel like it has happened again. I finally had a group of people to which I belonged, to identify with (Aspies), and then someone comes along and decides…well that doesn’t exist any longer.

Are we also invalidating all of Hans Asperger’s work with these autistic individuals? What about all the scientific research that has included Aspies as a group, will it still be valid? I think there are many questions rolling around in my mind that no-one can answer just yet.

On the other hand, I have noticed that with the label Asperger’s, opposed to Autism, sometimes our difficulties are minimalized. After all, Asperger’s is a mild form of high-function autism, isn’t it?

In my short time online writing and blogging, I have had more than one comment to that “Asperger’s does not equal autism, it just doesn’t.” Yes—we all have differing degrees of difficulties, and there is no doubt that I function differently than a person profoundly affect by autism. But, that does not mean my difficulties are not real.

One thing the new diagnostic criteria will do is label all of us autistic. No more minimalizing of those with Asperger’s or PPD-NOS, we will all be recognized for the difficulties that we do indeed have. This alone may be a good thing.

I visited with one psychiatrist, who insisted that she’d worked with Aspergerian children and has never seen an adult with Asperger’s. Then categorically denied that my diagnosis could be correct based on those terms without talking to me, looking at my records, or discussing my history.

Yet another doctor (a neurologist) questioned the validity of such a syndrome even existing, and this was not long ago. He went as far as to say that if they say it’s that (Asperger’s), “that means it’s all in your head.” What? My Sensory Processing Disorder is in my head? Really?

These are some of the things that MAY be corrected with the new umbrella diagnosis. Now, let’s look at what that criterion is:

DSM-V Criteria for Diagnosis Autism Spectrum Disorder

I have borrowed the following criteria from John Elder Robinson’s blog post, How Will the DSM VChanges in Autism Affect People? I’ve added made my own highlights.

“This is the proposed definition of ASD. For a person to be diagnosed, they must meet criteria A, B, C, and D.

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); (emphasis mine)

**This is new

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.”

My Thoughts

I have highlighted above some the most important things about this criterion, and what I consider to be the most concerning.

To begin with, the first section, A, highlights social interactions and to receive/maintain a diagnosis of autism spectrum disorder, you must meet ALL THREE OF THE DEFICITS highlighted. It bothers me that autism is still being categorized so strongly as a mainly communication disorder because socializing is only the tip of the iceberg when we look at autism as a whole.

For the most part I believe that if you have a diagnosis anywhere on the spectrum you will likely retain that diagnosis given even the three socialization based criteria use such a broad non-specific language. It does give doctors much latitude in diagnosis. Who is to say what abnormal social approach is? What exactly is normal?

I think that we have an improvement of sorts in section B, where patients are required to exhibit two of the four symptoms listed. This is the first time that Hyper-or-hypo reactivity to sensory input has been included in autism diagnostic criteria.

I am extremely happy to see this added with the hope that the medical profession may be beginning to see this part of our difficulties. If I had to pick just one aspect of my autism that gives me the most trouble, is the most disabling, and the most concerning to me, it would be my sensory issues—no contest.

I suspect the same is true for many spectrum children. From my experience, I can tell you that many meltdowns, “temper tantrums”, and outburst and complete shutdowns where I’ve closed myself off from the world were directly connected to the amount of sensory overload I experienced.

It bothers me a bit that it has taken so long for someone to recognize sensory reactivity as part of autism. Then again, it bothers me that it is effectively labeled a mental disorder and included in this manual at all, but that is a discussion for another time.

Section C: Symptoms present in early childhood; checck. Read about my childhood here.
Section D: It is subjective, but standard--impairs everyday functioning: check.
After reviewing the new criteria, I am assured that I will retain my autism diagnosis; it will just be called Autism Spectrum Disorder. I can simply say that I am autistic without explaining what Asperger's Syndrome is because most people have at least heard of autism. I am NOT worried about losing a diagnosis.; I am only losing a label that I have come to identify with and for me that is sad. I am after all, Aspie Writer. Should I change my name?
So now that you know what the new criterion is, what are you thoughts? Do you welcome a change in diagnosis? Horrified by the invalidation of Asperger's? What will this mean for your/our children?

“You need to make a left at this corner. No—your other left” ~ Mr. Aspie Writer

It doesn’t happen every once in a while; it happens all the time.

Whenever I am asked for direction (I am great at giving directions because I remember street names) I stumble over which way to tell the person to turn. I will point to the left and say right, or point to the right and say left—without fail.

I literally have to pick up my hands, look at them, and remember which one I write with. I write with my right hand. When I get those inevitable odd stares, I just laugh and say, “38 years old and I still can’t tell my left from my right.” Ha-ha. But it wasn’t funny, it was embarrassing.

When I am told, “it’s the first door on the right,” I automatically turn left when I get there. It’s in the right drawer, the right cabinet… I open the left drawer and the left cabinet every time. I always thought I just had some strange mental block or something. I mean with a 50/50 chance of accidentally turning the right way (left or right) I get it wrong 100% of the time! What are the odds?

It never occurred to me that there might be a reason, other than my own stupidity, for my difficulty differentiating right from left. It never occurred to me that autism could be the culprit; that I was having spatial perception problems.

When I was younger (early twenties) I taught ballroom dance at Arthur Murray Dance Studios. I needed to call out which foot my partner had to use, and in which direction he needed to move. If my partner was taking a step with his left foot, then I was doing the opposite with my right foot. I never got tripped up. My movements had to be a mirror image of his—always backwards, so I blamed that dance experience for my difficulty with right and left.

After all, since I taught that way for a few months, it must be the reason I still can’t tell right from left almost twenty years later. Right?

I never did come up with a good excuse for why I had difficulty before I worked there.

Autistic children often have spatial problems; of which telling left from their right is only one of the aspects. I don’t know why this surprises me anymore, at this point nothing should. It just seems like every day I am learning something new about myself; my autistic self.

Things that never made any sense, had no good explanation, made me feel silly, stupid, less-than or alone can now be explained. I have a new set of eyes with which to see myself.

Does anyone feel embarrassment over a seemingly simple task? Fumble over left vs. right? Are there any tricks you come up with to help you come to the correct answer more quickly so no-one notices? Unfortunately, my looking at and comparing my hands, often mimicking writing to remember is not exactly inconspicuous.