You’ve been around my entire life, but I’ve never seen you
until now. Everybody else saw you and christened you
crazy, nerdy, or retarded through their own lenses… But I christen you
different, with a middle name of
(from my poem, “An Open Letter to Asperger Syndrome”)
Most of you who have been following me for the last few months probably know that I was a self-diagnosed, self-identified Aspie. Earlier this year, my counselor and I had discussed the very real possibility that I had an autism spectrum disorder. I proposed Asperger Syndrome for several reasons: 1) because I was verbal before age 3 and never lost verbal ability (most with classic autism either lose verbal ability or don’t have it before age 3 or so), and 2) other symptoms, such as obsessive and narrow interests and difficulty with social cues and interaction, also fit me. My counselor agreed, and thus began my journey to an official diagnosis.
First Things First
First, I had to decide whether I wanted an official diagnosis or not. I thought about it at first and realized that I didn’t really need the diagnosis to tell me anything that I didn’t already know. However, I thought about three advantages of having one: possible access to services meant to help people on the spectrum; documentation I might need for protection under the law, namely coverage under the Americans with Disabilities Act of 1990 (ADA); and, the ability to request workplace accommodations. When I talked about this with my fiancé, he also encouraged me to pursue an official diagnosis. All of these things considered, I decided to move forward with trying to getting one.
Next, I had a conversation with my counselor. She did mention that one issue with diagnosing autism spectrum disorders is that different doctors might come up with a different diagnosis: one might say Asperger’s, one might say high-functioning autism, another might say PDD-NOS, and still another might say that I didn’t have a spectrum disorder at all. We also briefly talked about the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, otherwise known as the DSM-V. I now understand that it is supposed to be released in May of 2013 and will roll related conditions – Asperger’s, classic autism, PDD-NOS, and so forth — into one diagnostic category, autism spectrum disorder. She postulated that this might solve the kinds of diagnostic problems that she had mentioned as well as help pave the way towards insurance companies covering costs related to Asperger Syndrome. While I wasn’t completely cognizant about these kinds of issues, I understood enough to know what a combination of all of these conditions in the DSM-V might mean. I plan to post about this more at a later time, after I’ve done more research.
As I mentioned in my very first post, she wasn’t able to find an instrument that measures the presence of Asperger’s or autism spectrum disorders in general that was usable on adults over the age of 21. However, she was confident of her professional opinion, which I trusted as well. Also, I had taken two online assessments which strongly indicated the possibility of a spectrum disorder: the Aspie Quiz, which was developed by individuals with Asperger’s and was inspired by other psychological instruments; and the AQ (or Autism Spectrum Quotient) test developed by psychologist Simon Baron-Cohen and his colleagues at Cambridge University’s Autism Research Centre. I scored high on the Aspie traits scale of the first test and scored a 35 on the second (32 indicates a possible autism spectrum disorder). Of course, there is the caveat that online tests cannot be a substitute for a diagnosis, and I did want another professional analysis or evaluation just to confirm my suspicions. So, I began making phone calls.
Next Step: Finding a Provider
As you might already know, it can be somewhat difficult to find a medical or mental health professional that diagnoses adults for autism spectrum disorders. An article in the Columbus Dispatch about Asperger Syndrome and employment difficulties mentioned two area organizations that might be of help: the Ohio Center for Autism and Low Incidence (OCALI) and the Nisonger Center at the Ohio State University.
I first contacted OCALI and explained that I was an adult who suspected that I had an autism spectrum disorder and was looking for a professional who could diagnose me. OCALI pointed me to the Nisonger Center. I called them next and discovered that while they no longer diagnose adults, they were able to point me to some professionals who could. Interestingly enough, one of them practiced at the very clinic I already went to in order to see my current counselor.
When I told my counselor about this, she indicated that yes, she knew this professional. This was sometime in August. I asked if there was any way that we could do a joint session. Since this counselor does her own scheduling, my counselor conferred with her to find a good date/time where we could all meet. After a couple of tries and one cancellation, we were able to schedule a session for this past Friday the 8th.
Now, my counselor had said a few weeks back that at any time she could write a letter documenting that I did indeed have an autism spectrum disorder and the letter would outline the kinds of accommodations I might need. I did still want a joint session, if nothing else to confirm what I, my fiancé, and she already thought. Also, the other counselor had trained at the Nisonger Center, which was a plus. I decided to go forward with the joint session.
The 8th came. I left work a little early after my fiancé came to pick me up. We grabbed a quick dinner near the clinic and then arrived about five minutes early. She came out into the waiting room after a few minutes and we went back to one of the rooms, where we had this session for about an hour. Unfortunately, my own counselor had come down ill and was unable to make it, so it was just the three of us that afternoon.
She began by asking me why I thought I had an autism spectrum disorder. I spoke a little bit about my childhood – my mother’s observation that I had trouble with eye contact, the teasing from bungling social rules, the pranks played on me, my failure to understand sometimes what my classmates meant (which got me laughed at behind my back), and so forth. I fast forwarded to my adult life and mentioned the panic attacks and some of the sensory trouble. Then I mentioned my college friend who had begun suspecting that she had Asperger’s and reading the symptom list – and realizing that about two-thirds of it fit me. Then I mentioned my research and how I began cataloging the events in my life which could very well be explained by Asperger’s.
She also asked what I thought an autism spectrum disorder diagnosis would do for me. I mentioned the reasons I’d talked about above – to validate our already existing suspicions plus for legal reasons (accommodations and such).
She then began to use an instrument to ask me questions about my childhood and now – language acquisition and difficulty, sensing the emotions of others, sensory issues, and so forth. It wasn’t completely a blow-by-blow, step-by-step use of the instrument, but she did ask me quite a few questions from it and took a good deal of notes as I talked. She asked my fiancé a few questions too – how able I was to sense if something was wrong with him, and so forth.
After our interview, she concluded and thus validated our opinions that yes, I had a spectrum disorder. We agreed that it was Asperger’s because of some of the symptoms I’d already mentioned to my counselor, such as a lack of language delay. She then did something that I didn’t quite expect (probably because I hadn’t really thought about it before): she recommended that I try to get an evaluation from the Ohio Bureau of Vocational Rehabilitation (BVR). This was because earlier in our conversation, she asked what my educational background was (I have a Bachelor of Arts in Communications from Bowling Green State University as well as a Master of Business Administration from the Keller Graduate School of Management) and what my employment situation is (I’m an administrative assistant for the graduate school of a local college). Probably observing that I am underemployed for my educational background, she asked me about this. As I mentioned in my post about Aspies and workplace issues, I’ve kind of drifted around careerwise without a real clear direction, but I hope to change this with some real help and some real work on my part.
I’d also mentioned during our conversation that I’d encountered sensory issues at work, with were solved by a recent office move. This was before very many people that I worked with knew that I even had Asperger’s, much less the upper management who had planned said office move. She recommended that I see an occupational therapist that works with adults on the spectrum with workplace sensory issues. Reflecting upon this, I think this is a good idea. Right now, I have the set of accommodations that I need, but I think further analysis and evaluation of what might better help me in the workplace might be beneficial.
What Do I Do Now?
The next step is to obtain a letter which documents my diagnosis, which should be happening sometime next week. Once I have this, I will contact the Ohio BVR and find an occupational therapist per her recommendations. I will also continue to work with my current counselor about issues related to Asperger’s as well as PTSD.
I feel a little relieved that I have an official diagnosis now. Like I said, it doesn’t tell me anything that I didn’t already know, but I no longer feel in “limbo” not having one. One thing I plan to explore and write on at a later date is the process for an adult woman to obtain an Asperger’s or autism spectrum disorder diagnosis. I am fortunate that I had a very good and astute counselor as well as a practicing professional already at my clinic with expertise on autism spectrum disorders. What I’d like to research is whether my experience is typical of an adult who suspects that she is on the spectrum or if other possible experiences on the road to diagnosis exist.
Thank you again for joining me in this step on my journey. Please talk back to me – tell me about your own experiences with diagnosis. Do you want, need, or care about a diagnosis? Have you been able to obtain one? What difficulties have you encountered — either in finding a professional, dealing with insurance or the costs of diagnosis? I’d love to hear from you.
Until Next Time,