“What is a fantasy map but a space beyond which There Be Dragons?”

‑ Terry Pratchett ‑

Several years ago, I began informally mentoring a family on my street, whose child had just been diagnosed as autistic. That mentoring primarily involved providing a child-sized pair of ear defenders, and sitting with the mother and grandmother and explaining why autistics do what we do: why buttons and shoestrings may be hard, why hair washing can be traumatizing, why hiding in a cupboard may be the best way to prevent a complete meltdown, why an autistic child who was perfectly behaved at the mall might still apologize for his behavior when he gets home.

A few months into that process, the boy’s grandmother asked me why he was flapping his hands. And of course I was aware that she was worried and upset about what seemed to her to be an extremely disturbing and highly visible new behavior, but I was also very aware that my emotional response more resembled what most people experience watching a baby take its first steps. I had to suppress an enthusiastic cheer as I thought to myself: “Aw, how adorable! He’s discovered stimming!”

I didn’t say it out loud, because I knew that it would not be well received, and I was able to allay her fears, explain the purpose of stimming, and successfully advocate for her grandson that his stimming should not be suppressed. But it made me aware that I was the only one celebrating what is undeniably a very important developmental step for an autist.

The familiar milestones that are celebrated when an allistic child successfully attains them become an occasion for anxiety, grief and embarrassment and when the autistic child fails to do so, the very definition of an autist’s disability. And when those milestones are met late, they are often celebrated in a manner that is tinged with relief, inseparable from notions of impairment. Moreover, it is not just that the celebratory course of allistic development is inevitably a course of failure and disappointment in autistic development. The achievement of milestones such as discovering stimming, which are critical to autistic development, are likewise not celebrated and instead, are met with the same anxiety, grief and embarrassment.

Under the best of circumstances, the autistic developmental course is a lonely affair that the autist must navigate alone. Autists rarely receive support in achieving their own autistic milestones like learning to stim, teaching themselves to read lips in the case of central auditory processing disorder, teaching themselves to withdraw to a dark, enclosed space to manage over-stimulation, etc. They find their way to these skills alone, often in the face of intense pressure to achieve skills that will come later, if at all. In the fortuitous case that at least one parent knows they are autistic and/or there are other siblings on the spectrum, normal autistic development may be celebrated within the family, but not in society at large. Few have such optimal circumstances.

The situation for many autistics in their 30s and older is even more isolating. Due to the relatively recent development of autism as a formal diagnosis, a vast number of adults are only now discovering and starting to come to terms with the fact that they are autistic. The way in which autism is diagnosis has changed, steadily and often dramatically, over recent decades (a topic unto itself), and it is worth noting that, prior to 1980[1], there was no diagnosis of autism per se, autism being mentioned within one of the criteria for what had been referred to as “infantile schizophrenia.” First identified as a disorder in 1948, even this was only codified in the first edition of the diagnostic manual in 1952. It has been estimated that those born prior to 1990 has a very narrow chance of having been accurately diagnosed, with the numbers misdiagnosed being highest for women, at 1 in 10 who actually are autistic.[2] Other factors compounds these poor rates, with people of color being 81% less likely to receive an accurate diagnosis, for example.[3] [4]

The normal autistic course of development undertaken by those who were not diagnosed as children was very lonely indeed, and that continues through what can be an extremely disorienting process of learning who they really are later in life. Given the numbers of people who, by necessity, are diagnosed or who self-diagnose late, not only is the loneliness of developing as a member of a completely different neurotype and in isolation from other autistics an integral part of autistic culture for many, but so too is the loneliness of grappling with a radical shift in identity and one’s place in the world decades later. The initiation into autistic culture can be challenging and isolating.

Some arrive without formal diagnosis, being self-diagnosed, which can create its own set of problems and self-doubt, but even in the case of diagnosis by a medical professional, the path to self-understanding and acceptance requires traversing the expanse between formal diagnostic criteria (which can be very problematic) and the lived experience as shared by autistics themselves – a migration from condition to culture. It can be overwhelming, especially in the beginning, and wading through the seemingly endless theories, information and discussions online looking for guide posts can be daunting or impossible, needlessly confounding the journey to Self.

Clearly each journey is unique to the traveler undertaking it. We enter the Autistic Tribe via various routes and often with vastly different experiences of the world and of ourselves, but some of what autistic adults experience when they discover that they are autistic is very similar. What follows are a few things that I wish I had known or that I wish I had been told when I finally started to understand my diagnosis from within autistic culture.

It isn’t a map. It isn’t even a continental outline, but it points to some of the places where we need to start the mapping process to take some of the bewilderment and anxiety out of finding our way back to the Tribe and to ourselves. Each of these is simply a pin in a blank sheet that notes where the path becomes difficult, and where we might fear There Be Dragons.

  • The process of accepting that one is autistic is fraught with conflicting emotions.

When you first discover as an adult that you are autistic, it resolves a lot of questions about yourself, your relationships with other people, and the world around you that you may have struggled with for many years. Knowing you are autistic can cut through a seemingly inexhaustible array of issues, as through a Gordian Knot, and that can be an enormous relief.

At the same time, that process of resolution can precipitate an extended process of self-examination and reflection on one’s life. Some of these thoughts touch on painful events or circumstances, so it is natural that there would also be sadness and discomfort when examining these things, even while you are feeling relief at having an explanation.

Your feelings about being autistic may cycle through relief, anger, sadness, grief, shame, pride etc. That cycle is normal. In essence you are revisiting and integrating your experiences in a different way and with a new understanding, and that is a cyclical process of growth, not a linear one. Initially, your emotions may cycle quite quickly, however over time, things stabilize and cycle more slowly until you arrive at a place where you feel you know yourself. (Hopefully we are never done growing).

  • Feeling relieved or happy about being autistic does not invalidate it.

Many people express doubts about being autistic in the early stages of processing, often because they feel they should not feel so relieved or happy about it. We are not generally taught that realizing that we have a disability can be a fortuitous thing, since the predominant perception of disability is that it is a “personal tragedy brought about by cruel nature”. (I will leave the discussion of the medical model of disability versus the social model of disability for another time).

There is nothing strange about being relieved or even happy to have a diagnosis of autism. You have lived with the disability your entire life, and especially if you have not been diagnosed, you were likely blamed for what were, in truth, neurological differences. Simply being different can result in a lack of acceptance by parents, siblings, schoolmates and peers, and bullying, not just in childhood but in adulthood, is so ubiquitous that key researchers have suggested it should be a diagnostic criteria. The negative aspects of having a disability were all there. A diagnosis just provides you with an understanding of why things may have been a struggle and a map as to where your strengths and vulnerabilities may lie so that you can stop building on weaknesses and build instead on strengths.

  • There can be intense grief after realizing you are autistic.

It is not at all uncommon for people to grieve when they understand that they are autistic. Particularly when one realizes this later in life, there can be a sense of loss about what we might have done differently had we just known. There can be anger at the help that was not available or not provided, even if none would have been available anyway. Depending on how much efficacy you have had in your life, the grieving process can be one of the most difficult parts. Revisiting past experiences to view it through this new lens of autism can also stir up old sadness and hurts that had hitherto remained buried.

If you experience intense grief about the realization that you are autistic and the losses, confusion and painful experiences associated therewith, it is important that you get support. There are not many counselors who specialize in assisting autistic clients who work with adults, since the focus in treatment is still almost exclusively on children. For most people, support comes from the autistic community. Having a mentor who is autistic and understands autism more thoroughly can be extremely helpful. At some point, it is a good idea to connect with the larger community online or in a local support group.

Identity is molded by experience on one side, but by social interaction on the other. Being a gregarious species, humans are hardwired to need social interaction to understand ourselves and to affirm who we are in the world at large. Finding the autistic community will provide an experience of autistic culture and the social affirmation of who one is among others who share that culture.

  • It can take time for self-esteem to recover.

It can take time for self-esteem that has been damaged by its rough encounters with the allistic world to recover. It can be very difficult to get rid of the negative feedback that others have given, even if you know that that feedback was incorrect and based on hostility towards and a lack of empathy for people of a different neurotype. One of the most positive ways to do that is to help other autistic adults as they start their process of self-discovery. It is sometimes easier to cultivate empathy for oneself by extending empathy to someone struggling the same issues of redefining their identity.

 

Copyright © Semiotic Spectrumite 2017. All rights reserved.

 

[1] American Psychiatric Association. (1980) Diagnostic and statistical manual of mental disorders. DSM-III. Washington D.C.: American Psychiatric Association.

[2] Marco, E. J. (2006). “Autism-lessons from the X chromosome”. Social Cognitive and Affective Neuroscience, 1(3), pp. 183-193. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2555419/

[3] https://www.ncbi.nlm.nih.gov/pubmed/21707353

[4] https://spectrumnews.org/news/disparities-in-autism-diagnosis-may-harm-minority-groups/