The knowledge of my autism has helped me in so many ways. For a person with autism or Asperger’s Syndrome, not knowing anything is a form of torture in and of itself. So finally having a name, a definition, that I can apply to myself has helped tremendously and been of incalculable worth to me.
My boys now know I’m an Aspie, and to my 2-year-old I’m still just Mama. To my 8-year-old Aspie son, I’m still just Mom. To my 13-year-old Aspie son, I am part Mom, part superhero—according to him, my super-senses are super-powers. I am still the same person my husband fell in love with and married, but now we are learning more about autism together. We are learning how to communicate and understand each other better.
Our life is not perfect, but the veil of darkness and misunderstanding has been pulled from our eyes. I will never be normal, as in neuro-typical, but I am normal for me. Now, more than ever before, I am starting to learn just who I am, which would not have happened without my official autism diagnosis.
My differences define me. My quirks are now explainable. Knowing why something affects me the way it does, allows me to find ways to cope and sometimes even counter some of the more negative traits that come along with my autism.
I have Asperger’s Syndrome. I am an Aspergirl, I am a mom, I am a wife, and I am an individual who sees things in a unique way. I am just like you, only different, because I am me. Now I know being me is not a bad thing.
I rejoice in my Aspie-ness, and if you are on the spectrum, or someone you love is, you should too.
Author’s Notes; My Beloved Aspie Label
Before I had completed writing Twirling Naked in the Streets, the diagnostic criteria for autism spectrum disorders underwent yet another change: Asperger’s Syndrome, AS, will be removed from the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM-V, which will be published and in effect in May of 2013. AS will now be included under the umbrella diagnosis of Autism Spectrum Disorder, ASD. ASD will encompass Asperger’s Syndrome, Autistic Disorder, and Pervasive Developmental Disorder—Not Otherwise Specified, PDD-NOS—all autism spectrum disorders.
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 or 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 the label has been removed.
Under the new diagnostic criteria outlined in the DSM-V, in order for a person to be diagnosed with Autism Spectrum Disorder, individuals “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 the 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 stereotypes, 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 have highlighted above some of the most important things about these criteria, and what I consider to be the most concerning. To begin with, the first section, A, highlights social interactions and to receive or 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.
There has been some concern from adults and parents of children with Asperger’s Syndrome that they may lose their diagnosis, thereby losing their support from school systems, and medical communities. I believe that if you have a diagnosis anywhere on the spectrum you will likely retain that diagnosis even given the three socialization-based criteria, which use broad, non-specific language. The language gives 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 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, 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, outbursts and complete shutdowns, where I’ve closed myself off from the world, were directly connected to the amount of sensory overload I experienced.
The final two sections in the criteria simply state that symptoms must have been present from early childhood, and interfere with everyday function. If you have read all the way through this book to this point, you can plainly see that both criteria have easily been met.
I, along with many other Aspies, will not be losing our autism diagnoses; we will only be losing a label. Albeit, this is a label that was hard to come by, difficult to understand, and has taken a long time to accept. Now that it is a part of me, and has helped me understand myself, and connect with others more easily, I will be sad to see it go.
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About the Author
Jeannie Davide-Rivera is a student, writer, wife, and mother with Asperger’s Syndrome. She lives in South Carolina with her husband, and their four sons, three of which are on the autism spectrum.
You can visit her Asperger’s Website at:
> www.aspiewriter.com
Connect with the author through her personal Facebook page
www.facebook.com/aspiewriter
Follow her on Twitter:
https://twitter.com/AspieWriter
Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism Page 16