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?
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?
