So I’m Autistic. Now what?

I’m a 41-year-old woman of color and I got diagnosed with autism this week. The clinician who rendered the diagnosis was of the opinion that Asperger’s syndrome should still be in the DSM and is a more accurate description of what I experience. He talked quite a bit about the ebbs, flows, and revisions of diagnostic designations. I liked that he had reflected on how diagnostic categories change and mutate with time, data, and cultural norms.

I don’t trust people who simply abide by rules without questioning them or reflecting on their origins. I’ve been on the wrong end of diagnostic labels for most of my life due the refusal of clinicians to do a thorough investigation. Major depressive disorder, nope, generalized anxiety disorder, nope, borderline personality disorder, nope try again, autism, yep, that’s it! I was glad to have found someone with whom to have a dialogue rather than a top down testimony on the labels of my life.

I know for many people, an autism diagnosis is a real ah ha moment. For me it was more of a ha ha moment.

Several things motivated me to seek a diagnosis. First, I have recently completed a memoir that outlines my nightmarish journey through the American mental health system where I received the misdiagnoses listed above and many, many more. In reviewing my text, my editor remarked that some of my thought processes seemed unusual. She pointed to passages that recognized relationships among things that most people would view as distinct. Another motivator was a realization I had earlier this year, when I was diagnosed with auditory processing disorder (APD). I realized that my lifelong habit of seeing sound instead of just hearing sound is not a skill utilized by all people. It is a phenomenon called synesthesia and it is often found in people who are described as autistic.

That’s right, I see sound. When there is background noise and I’m trying hard to understand you, the potential spellings of all of the words that come out of your mouth are displayed in my mind’s eye like a flashing electronic billboard.

Once I realized there was a word for this I dove in and read up. In researching synesthesia I encountered a great deal of information on autism, and recognized that several of my behaviors fit the bill. I am easily absorbed by my interests and will neglect everything else in my life if I become enticed by an idea that requires more investigation. I have significant sensory sensitivities. I can become non verbal when I experience sensory overload. As a child I was prone to what are colloquially known as meltdowns when I encountered too much sensory stimulation. I prefer the company of ideas, concepts, and projects to the company of other people with few exceptions. I have memories of being chided for displaying what adults considered to be inappropriate facial expressions at inappropriate times. As an adult I have been accused of being “impossible to read” because my facial expressions can be more muted than those of most people.

So after some digging, I found a clinician who would engage in a conversation with me about whether my experiences would be called autistic by himself and his peers. After two lengthy interviews he confirmed my experiences would in fact be considered autistic.

I smiled in response to his proclamation. Ha ha. The folks with advanced degrees have a word for this.

Autism and auditory processing disorder occur together in some people (I don’t like the term comorbid, it sounds deadly), but they are not necessarily mutually inclusive. You can have one without the other. I happen to have both.

My APD diagnosis added value to both my present life and how I view my past. It explained or at least attempted to explain my lifelong inability to hear in environments with background noise or poor acoustics. I had endured 40 years of being shouted at and demeaned as inattentive when I simply could not hear and asked for repetition or responded inappropriately due to a misunderstanding of spoken language. It was nice to have my experience of years of functional deafness diagnostically confirmed. After my APD diagnosis I knew what my options were. I could pursue treatment or learn an alternative visual language such as American Sign Language. I eventually chose to do both.

The autism diagnosis has only added a little value to how I view my past. It adds value to know that some of my behaviors, such as my silence when I encounter too much sensory stimulation, or the self soothing behaviors I exhibited while young, such as rocking back and forth or covering myself in blankets, are not associated with a mental illness but rather with a brain difference. It adds value to know that similarly, my emotional outbursts in response to sensory overstimulation have nothing to do with a personality disorder as had been posited by some of the fools in health care I had previously encountered.

Prior to diagnosis, I had already modified some of the more stereotypically autistic behaviors I engaged in when I was younger. For example, I used to find it very hard to empathize with people who behaved irrationally. I have never had a problem empathizing with people whose rational motivations I understood. But hours of loving kindness meditations have grown my capacity to understand the emotional states of other human beings, to some extent even the irrational states. Similarly, the profound social difficulties I experienced as a child all the way up through my early thirties have been largely mitigated by my intense efforts to pay closer attention to people and imitate standard social behaviors. I restrict my anxious hand flapping and excited bouncing to my home for the most part and everything is fine.

The fundamental difference in why the autism diagnosis hasn’t added much value to how I view my past and why the auditory processing disorder diagnosis has, is that only one aspect of autism as it presents in me is disabling. All of the other aspects I view as strengths or assets. The clinician from whom I got a diagnosis characterized my greater ability to function in terms of communication and intellectual ability as the trait that put me in the Asperger’s group he longed to reinstate in the DSM as a distinct diagnosis instead of the general autism group.

In his assessment, Asperger’s folks are what people used to refer to as high functioning autistics. I prefer to think of us as high conforming autistics because the gauge of measurement references Aspies’ greater ability to pass for neurotypical. To pretend there is some unbiased measure at play in the distinction is foolish, it is a matter of conformity or the appearance of conformity to neurotypical culture and society that tempts some clinicians to separate autistic people into categories.

Higher functioning or Aspergian are value laden classifications. Some autistic people cannot or will not conform to neurotypical standards, and I see nothing wrong with that. Society disables people by removing access to employment to those who can’t or won’t conform to certain social precepts or cannot perform offer optimal performance in sensory unfriendly conditions. The autistic condition is not inherently lacking.

I’m only high conforming in quiet environments. My sensory challenges, in my case hyperacusis, which is profound sensitivity to everyday sound, prevent me from participating in life in the ways that neurotypical people do. I lose clarity of thought and the ability to speak when things are too loud. This quality is related to autism as well as auditory processing disorder.

Otherwise, autism as I experience it, is mostly benign or even helpful. I love my hyperlexia and my ultra rational thought processes, and I wouldn’t trade either for anything in the world. I don’t want to change them to achieve higher conformity. My synesthesia helps offset my auditory processing disorder by allowing me to see words in addition to hearing them. If I must live with APD, I prefer to also live with synesthesia. Autistic is simply one facet of how I view things and how I am inclined to respond to things.

In contrast, every aspect of auditory processing disorder is very much a disability. I have incredible difficulty hearing in certain environments, including any environments where more than one person is speaking. When many people talk at once, their words become blurred and indistinct. All the voices melt into one big pot of sound and color. I cannot sort out which words came from which speaker and find meaning in the cacophony. That destroys my ability to participate in many forums and activities.

Even though the autism diagnosis didn’t add much value to my interpretation of the past, it has added value to my view of the present and future. I have found a community of fellow autistic people whose insights and talents are amazing. I cherish this newfound fellowship.

Finally, my perspective on my diagnosis is informed by my Buddhist beliefs. The Buddha taught that self is an illusion and I think this teaching is true. Autistic would be a description of my existential reality or self, and as such is somewhat of a shallow and illusory description.

I have been able to influence the way I think and behave through meditation. I could even say that meditation has made me less autistic and more conforming than I once was. Whether that is a good thing is a matter of opinion. Auditory processing disorder is more a description of an ongoing experience than an existential reality. I have not been able to influence my inability to hear through meditation at all. Nor have I been able to influence my inability to hear through audiological therapy or any other efforts.

It has been an interesting journey so far navigating the descriptions I use for myself and the descriptions that people in the medical community would use to describe me. So now what? I will continue to lead my life as before, but as a proud member of a beautiful community of fellow autistic people. That makes my journey priceless.

It has been an interesting journey so far navigating the descriptions I use for myself and the descriptions that people in the medical community would use to describe me. So now what? I will continue to lead my life as before, but as a proud member of a beautiful community of fellow autistic people. That makes my journey priceless.

A Thank You to the Deaf Community

Thank you, Deaf community, for giving me my voice back.

For all of my 41 years, I have been challenged by oral communication. I could only achieve fluency in short bursts that were intermittent and unpredictable. I now know that my struggle with spoken language was in part because I live with severe auditory processing disorder. I suspect I also experience what used to be called high functioning autism or Asperger’s, but getting a diagnosis as an adult takes either thousands of dollars or what seems to be an Act of Congress, and I don’t have the means to obtain either at the moment.

My auditory processing disorder went unnoticed and undiagnosed for my first 4 decades of life. After a brain injury, its effects on my speech became so pronounced that it was finally recognized. When I learned in middle age of the reasons for my intensified difficulty with spoken language, I was urged to seek therapy with audiologists and speech language pathologists to correct my perceived shortcomings. But I like who I am, so I sought another avenue. I went instead to you, the people of Deaf community, and I asked for you to teach me your language.

When sensory overload takes away my ability to use my oral communication, the neural pathways to my hands still function. I can still use ASL to communicate when my brain refuses to allow me to speak English. But I do not want this process to be abstract when it is in fact very human.

ASL is different from many spoken languages because the story behind it is a story of perseverance and oppression, it is the story of Deaf peoples’ precarious triumphs over the oralists who would have taken their natural language and forced them to assimilate speech for which Deaf people are not as naturally suited.

I thank you for sharing American Sign Language (ASL). I thank you for sharing stories of your historical and contemporary successes of building and maintaining a fine and functional culture that has no need for a typical relationship with sound. I thank you for helping me to understand how you have always embraced those who are different from the mainstream, how you have room for Deaf and deaf people, hard of hearing people, and deaf-blind people.

I am in a grey area between deaf and hearing, so I know my experience is not identical to yours. I do not wish to take more than you freely offer. I do not wish to speak for you. But I do wish to offer my gratitude for what you have shared, and acknowledge that I understand the challenges your community has gone through to simply establish that you are okay just as you are. That Deafness is not bad, but simply another condition with which some human beings live.

Your gift of signed language has given me my voice back. Your amazing visual vernacular is poetry to my optically oriented brain. With this gift of ASL I know I will be able to make myself understood in ways I could not before. Please accept my offer of deep gratitude.

Thank you.