Within the first few moments of my formal evaluation, I felt as though I were on trial and Dr. Devell was opposing counsel, deflecting my evidence with a twist of my words. He was also judge and jury. My job was to act as my own attorney and provide documents, examples, and histories to defend myself. I had to bring in witnesses, in this case, my husband, Adrian, to support my case. Opposing counsel ridiculed me (“I don’t believe you, yet …”); provided conflicting alternate theories (“Your instructors’ reports, your absences and withdrawals, and your grades suggest significant executive function deficits …” followed by “Your advanced degree indicates that you are fine …”); had evidence suppressed because I gestured with my hands, was able to maintain a long-term friendship with Loverne, and had previous (mis?)diagnoses (“If you have OCD, then you won’t have autism, because the two are not co-morbid …”).
It was demoralizing. It was dangerous.
At one point, when I was crouched on the floor of my living room, picking up pieces of a glass I had thrown while in the midst of a meltdown, I looked up at Adrian, my face swollen from crying and said, “Why won’t he listen to me? Why won’t he read my words and believe them? Why does he want me to have social anxiety, bipolar disorder, obsessive-compulsive disorder, and attention deficit disorder instead of autism?”
Dr. Devell rescheduled on me for the third consecutive time because he forgot about our meeting and had double-booked. This would be the second time he rescheduled that particular appointment. At that point we had only met twice. Three reschedules over the course of two visits. Once, it took him a week to respond to my response to his reschedule, never acknowledging that he had missed the new meeting time I had suggested. He asked me for the seventh time to interview over the phone even though I had stated nine times that I have a difficult time with that mode of communication.
I ended the evaluation.
By that time, I was seeing my regular therapist on a weekly emergency basis as well as calling her every Wednesday to check in. I met Dr. Devell to pick up some final paperwork and he and his supervisor sprung an outtake interview on me, like a surprise party in a nightmare. All surprise parties are the stuff of nightmares but this was the worst, because it came true.
I sat for forty-five minutes, staring at their mouths while they told me that it was all in my head, that I am just sensitive, and that I pathologize myself. It turns out they didn’t want me to have anything at all, except for hypochondria and a need for attention. The only thing wrong with me was me.
- My previous professional diagnoses of bipolar and obsessive-compulsive disorders and the underlying symptoms were dismissed as nonexistent.
- My history of executive dysfunction was not discussed.
- My inability to understand subtext and the havoc this has wreaked were ignored.
- My need for sameness and repetition were recognized and followed by a shrug of Dr. Devell’s shoulders, an “I don’t know …”, a downturn of his mouth.
- My prosopagnosia, including the time I was unable to recognize my family in a photograph, was declared a product of anxiety, though not a pathological anxiety. No, this was an anxiety that I manufactured because of my delicate nature.
And so on and so on and so on.
Dr. Devell said that what I described supported a diagnosis of autism, but I was able to work and was married, so did not exhibit impairment. Then he defined impairment to me.
Then he defined impairment to me.
He finally said, “You say you don’t feel _________________ but I think you feel _______________.” He smiled toothily at me to demonstrate his rapport with his patients. It was a brilliant show for his supervisor. At the end, Dr. Devell asked me if I had any questions. I sat, stupefied at his summary, and said “No”, barely able to open my mouth enough to allow the word to escape. It was a shield. Your weapons strike me but do not penetrate.
“I knew you were going to say that!” he exclaimed in a sunny voice. “I expect that you will be sending me a loooooong email later,” he added grinning and watching his supervisor from the corner of his eyes, as if he and I shared some private joke. In reality, that comment was a reference to the sixty plus pages I had written and sent to him when I realized he wasn’t understanding my oral communication, which is sparse and unembellished as a winter tree, especially under duress. Sometimes even the “no” is impossible, my muscles painful and unable to move, my brain full of the black and white static of an exhausted television set. He had told me to write as much as I wanted yet never stopped grumbling about the length. Even when I cancelled the evaluation he said, “The other two experts on the panel have certainly not been able to get through your documents.”
The first problem I had with that evaluation was that my fear of being misunderstood, unheard, and negated yet again came to fruition. I found this blog post, which, while distressing and horrific, is also uniting, solacing, and I am utterly grateful for it. As one commenter wrote, “… I felt extremely vulnerable. When I was describing why I thought I may have Aspergers [sic] I completely bared my soul, and I was still not believed. This was SOOOO painful and traumatic for me. It should not be this way.”
The second problem I had with that evaluation was the emphasis on impairment and deficiency, as if people with autism are inherently damaged in some way. It seems that for me to fit his definition of autism, I must be broken not whole. I must be wrong not right. I must feel bad not good.
Why can’t I be autistic and happy? It is as though the standard for permitted bliss is a creek, a narrow trickle of water, and I am sitting on the banks. What if that creek widened and became a flowing river? What if there was room for all of us to swim? Some of us could be NT and some of us could be ND and we could dive or float or warm ourselves in the sun before jumping back into the cool, clean water … whatever felt good to each individual.
I know that I am autistic, not because I am a failure (in fact, I am not a failure, despite society’s definition!) but because I experience, interpret, and perceive the world in ways that are different than how most people seem to do. This can certainly be challenging at times. I am like my beloved Windows phone in an iPhone world, incompatible and unsophisticated. But life can also be glorious and pleasurable. Adrian has even told me that I have superpowers:
- While my sensory processing sensitivities require close captioning to be on as I watch tv or the radio to be off when someone is talking to me, they also allow me to appreciate the tactile pleasure of my dog’s coat growing in cowlicks and the way that water reflects on trees.
- I may not spend time socializing but my special interests establish a work ethic and focus that are unstoppable.
- My rigidity creates a routine that is comforting to my family because my husband knows he will have clean pajamas after a long day at work and Reko is confident he will get his walk. Ladu knows that when I breathe a certain way, it is time for us to sit outside for lunch.
- My stimming can cause my body to move in unexpected ways as the thrills of certain patterns and repetitions ripple through me.
- Synesthesia allows me to see music.
- Instead of remembering faces, I recognize people by a certain wry of squint of his eyes or the soft melody of her voice. I notice the details.
For over forty years I have struggled with not understanding what people expect, not knowing to turn in homework without being asked and not knowing to do the opposite when a girlfriend says, “It’s fine with me if you go out with him”; with relationships squeezing every drop of energy from me the way the constant whys of a three-year-old do to tired parents; with completing everyday tasks, such as preparing two dishes at the same time or managing my finances, which are as insurmountable as taking one giant step over the Rocky Mountains.
My whole life I have felt as though I was a black hole, pulling everything into the dread of my nothingness. Or a great monster, destroying the world around me with the bite of my sudden absence or a swipe of my clawed literalism. I cut myself. I gave myself second degree burns. I attempted suicide on three occasions, serious, scary attempts.
The realization that I have autism has led me — through research, support groups, and the compassion of my therapist, Adrian, and Loverne — to cope with challenges in healthier ways. I no longer shame myself with questions that begin with “Why can’t I just …”. I no longer allow others to shame me. Dr. Devell, an ABA practitioner, told me that I needed to take classes to learn “throwaway lines so [I] can pass in social situations.” Why? I don’t need to do anything except care for my comfort and not cause harm as I maneuver through this world.
Now, I am at peace. Knowledge is power, after all. I finally know that I am neither black hole nor monster. I am just different … not deficient. Why should I focus on impairment? I have meltdowns and shutdowns. I have experienced two autism regressions just in the past year. I also am tough. I give myself permission to appreciate the blessings.
I ask you, Dr. Devell, why should my happiness be a factor against this diagnosis?
Since those dark days of evaluation — and that is what my memory of them is: sunless and miring, as if I were suspended in a tar pit — I have been healing. At first, I shuttered my home and curled up in the soothing shadows. Now, the windows are open, fresh air breathing resilience into my spirit.
I am me.
I need a chair to reach all but the lowest shelves in my kitchen. I wear noise-cancellation headphones in crowded spaces. I am right-handed. I rub smooth stones that are hidden in my pocket when I engage in small talk. I always stand up straight.
I never realized how tall I am. I am so very very tall. I might just step over a mountain one day.