• Understanding Autism from the Inside

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DSM-V – New Diagnostic Criteria for ASD – What will this mean for me, an Aspie?

Asperger’s Syndrome, PDD-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).
DSM-V New Diagnostic Criteria for 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 minimized.  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 minimizing 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? Autism is not real? 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 V Changes 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; check. 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?


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Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.