This is an oft-asked question. It is of particular importance here because the autism community accepts self-diagnoses. Evaluations can be expensive and subjective. For people with autism, it can be very challenging to communicate experiences and perceptions in “typical” ways. We hope that the specialists can understand other forms of communication, but that isn’t always the case. This procedure can be exponentially difficult for women and girls and those who are gender neutral, gender fluid, or transgendered, because they may express their autism differently than the expected presentation of diagnostic criteria. This is largely due to socialization rather than actual gender and/or sex differences. Still, in some ways, autism is still very much a cis-boys’ club.
Despite all of this, I long for a formal evaluation. I have many reasons why. I appreciate formalities. I want there to be no doubt that I am part of this tribe. I would like my voice to have the buttress of an evaluation when I speak to people outside of the community.
I haven’t had a concrete reason, though, until now.
So, why do I want a formal evaluation?
Because, the other day, I hurt my very good friend.
She is really my only in-person friend. We don’t see each other often, but I love her. She is forthright and compassionate and does not use subtext at all. What you see is what you get.
We were at lunch and talking about the spirits of our dead loved ones. Loverne mentioned her cat, Magpie, and I said, “Magpie?”
Loverne said, “Yes. Magpie.”
I repeated, shocked, “Magpie?”
Loverne paused, and in that instant, I considered shaking my head a little, closing my eyes, and saying, “Of course, Magpie. I know exactly what you mean.” But, I was so distraught that Loverne’s cat had apparently died, that I felt frozen.
Loverne, her beautiful blue eyes widening (I could feel them on me, burning my skin like sparks from a fire — oh, eyes can be such penetrants), said, a bit unsurely this time, “Magpie … my cat?”
At this point, I had The Look That Infuriates on my face. My eyes were blank, mouth slightly open, and I was expressionless. This look elicits a special kind of rage in people, one that makes them exaggerate their speech, throw their hands up, roll their eyes, and sigh. They say, in incredulous tones, “Are you serious right now?” and “You really have no idea what I am talking about, do you?” I have been told that I look disinterested or clueless. What’s really happening, is that my brain is processing, the way my computer does at three in the morning when I forget to shut it off, while the monitor stays asleep, dark.
In this situation, I was trying to process the death of Magpie, whom I love. Some of my favorite stimming comes in the form of interacting with animals, and Magpie had the silkiest fur, like very fine newborn hair. She was so shiny that light would bounce off her as if she were made of titanium. And she was slinky and sinewy, her movements almost sinfully decadent, muscles undulating in lazy waves. When she wanted attention, she would butt her small head against me and rub it up and down on my skin, her own form of stimming, perhaps.
Magpie is … dead? I wondered.
At the same time, I was trying to figure out how I could not have known this important information.
At the same time, my heart was cracking because, here we go again. One more friend lost because I can’t remember important information. Why am I so selfish? Why am I so self-involved that nothing else filters in?
At the same time … Magpie is dead??? Tears filled my eyes.
I think I could still have successfully masked at this point. I think I could have smacked myself on the forehead and said, “What am I thinking? Of course, Magpie. God, Loverne, I know she was your cat. It’s just … I still can’t believe she is gone, so you know … it took me a second to register …” Not great, but not as bad as a complete blackout. And then we would have laughed at my weirdness and the conversation would have continued, with the background static of Magpie is dead? Magpie is dead? Magpie is dead? running continuously through my mind.
I could have done that because I always do that. There is a saying, “You’ve got to go along to get along.” Damn, it’s exhausting, falling one lap behind, then two, out of breath, never really catching up. At least when I am masking, though, no one else ever knows how far behind I am. At least I am not hurting anyone.
But, I made a promise to myself not to mask with Loverne or Adrian, my husband.
“I just didn’t realize,” I said, hesitatingly.
“Um, okay.” To Loverne’s immense credit, she didn’t exaggerate her speech, roll her eyes, or storm away. She seemed confused — and a little scared. But, she stayed with me. “Magpie was sick …” she prompted.
“… and she wasn’t getting better, so you took her to the hospital … I remember all of that. I remember talking to you, letting you know this was the right decision, sending your photographs of her for your album.” And, I did remember those things.
“So …” Loverne continued.
“I don’t know. I just didn’t make the connection, I guess.” I felt so helpless and I knew how much Magpie’s illness and death had affected Loverne. I hated that I was making her relive the hardest parts of it because I couldn’t remember. Or was it that I couldn’t make that connection?
“Where did you think she had been this whole time, when you came over?”
“Under your bed.” I said this without hesitation, which may have proven the veracity of my oblivion.
I laughed because I was uncomfortable and nearly shouted, “I almost cried just now because I though Magpie had just died.”
The server came by and I asked for a box because I knew this meal was over, hastened by my brokenness. I have a pile of necklaces at home with damaged chains I need to fix. I wanted to put myself in that pile, but no pliers would twist the disconnect together and make me whole.
After the server walked away, I said, “I am so sorry, Loverne. I would never do anything to intentionally hurt you. I care about you very much. I just — I need things spelled out for me, otherwise I don’t make connections.”
She accepted my apology, murmuring, “I know.”
We continued our afternoon, spending a couple of hours at her house. I was surprised and grateful when she asked me to stay. Loverne showed me her flourishing garden, the phallic luffa dangling from their vines like the Massa Marttima mural sprung to life. She told me stories about her daughter and parents. She listened as I described a scene in the book I am writing. She gave me a miniature bowl and creamer because I love miniatures and they reminded her of me. She commiserated when I cried as I described my self-aborted evaluation, proclaiming the psychologist to be “awful” for his mocking and dismissive manner.
She didn’t hug me even though she is a hugger, maybe because she senses I prefer not to be touched unless I instigate it.
I apologized again. I don’t know if she heard. I suspect she did, but Loverne is not the type to overanalyze and, I did hurt her. She knew it wasn’t deliberate, but neither is giving dinner guests food poisoning: it is still brutal and raw and healing takes time.
She pointed out the cat-shaped urn on her bookshelf, and I said, “I remember that.” I did, too. It was small and smooth, slightly cool to the touch, like the river rock I kept in my pocket and rubbed in secret. I still couldn’t tell you if the cat is sitting up or lying down, though.
The entire time, I felt three tornadoes churning in my belly: one for her discomfort, one for my discomfort, and one for my discomfort over her discomfort. While I do not often understand why people feel the way they do, I can feel their feelings, which in turn affects my emotional, physical, spiritual self. It’s like a pinball, ricocheting through the machine, causing all kinds of lights to flash and noises to sound, levers to open.
When I returned home, I said to Adrian, “Something weird happened today.” I know that my affect does not match my emotions, and in this case, I think I may have sounded amused. I was so anxious and those tornadoes were still whirling away.
After I relayed the events, he said, “That seems off-putting.”
Stung, I said, with concern and great sincerity, “Maybe I shouldn’t have any friends.”
He responded, “Just work on keeping the ones you have.”
What?! I took a hot shower, the strong water pressure kneading my muscles. As I dressed, Adrian asked, “Do you feel better after your shower, baby?”
“No, I don’t understand why you said that.”
He came into my room and the three tornadoes hit, a rainstorm of tears gushing down my face. Plus, Magpie had died. She had not been hiding under the bed. Sweet, fierce girl.
Adrian put his arms around me and I sobbed. “I didn’t mean to be off-putting. How can I work harder if I already work as hard as I can? I don’t have any tools. I don’t have an instruction booklet. If you think ill of me I will be destroyed.” Spittle sprinkled over his arms and I apologized. I had no control over my body at this point.
“You work so hard. Loverne knows that. She didn’t get mad. She loves you. You love her. It’s okay, Saraswati.”
“Why did you say that then?” I was inconsolable.
“I just meant that you should focus on the friendships you have and show her how much she means to you, even if you can’t remember events.”
Mute, I lay in bed and Adrian lay on top of me. I love his weight on my body. After several minutes, I went to sleep in my dark room, the fan blowing cool air over my face as I snugged tight under my heavy blanket. A few hours later, Adrian reminded me to eat something. I ate my everyday sandwich and lentil chips and then spent time on the internet, posting the incident on autism support groups and message boards, wondering if anyone else had experienced something similar.
Or am I just an asshole? A monster?
I didn’t have a specialist to ask. I hadn’t seen much about memory in most of the blogs, organization websites, and scientific articles I had researched. I was alone.
And then: one response, two, three … people telling me that they, indeed, had experienced something similar. One gentleman wrote that he forgets his close friend had died, though he wears his friend’s watch every single day … four, five … it was like watching a rain barrel fill with water. Some people theorized that perhaps due to compartmentalization we have to be re-exposed to the events and process them all over in a different way than we did the first time. Another thought was that we remember through our emotions and not through actions. We were all trying to figure it out together, as if our experiences were photographs that, when laid side-by-side, created a panorama.
With Magpie, my role was to help Loverne through her trauma. My actual memory of that time last spring was feelings of sadness and despair, and an image of my hands cupping a lizard after he had fallen into my pool, the drops of water magnifying his scales in the sunlight. Once Loverne prompted me at lunch, I remembered how I offered her love and support when Magpie was euthanized, how distraught and overwhelmed Loverne had been. I still did not make that connection to death. I felt it fresh, as we ate pizza in the autumn sunshine. Now I am processing her loss in a deeply emotional way, remembering her sweet face, her whiskers feathering my cheek.
Inspired, I renewed my research the next day and found a blog written by a mother whose son has autism. She described something called episodic memory, which is part of our autobiographical memory. I continued my search and came upon an article about episodic memory that gave an example of how an NT might remember an event and juxtaposed it with how an ND might.
Bingo! I thought. This is it! I am not a selfish, self-involved monster. I just remember things differently. Not better or worse … just differently.
Relieved, I texted Adrian at work. I have not discussed it with Loverne, because, as I mentioned, she is not one for analysis and dissection. She loves me and I love her and that is enough.
How many times, I wondered, have I lost people who I care about because they think I do not care? Too many to list here.
What would be different if I had a formal evaluation? Maybe nothing. But maybe I would have a specialist in my life who could guide me, provide me with resources and tools and the wisdom of experience. Maybe this knowledge could act as an interpreter between the NTs who love and want to understand us and us, the NDs who are always on that hamster wheel, trying to get from the point of confusion to the point of understanding. Maybe instead of emotional self-flagellation I would default to self-care and kindness.
Because, here is the thing. I don’t know that this was due to episodic memory processing. It is what I have determined after hours of reading anecdotal and scientific documents, but I am not an expert on autism nor on memory function. I am hearing hoofbeats and trying to figure out what animal they belong to with no expertise and little assistance.
What I do know after this entire experience is that with or without a formal evaluation, there are no pliers needed because I am not broken; I am whole and very connected to the world around me, to my friend, my husband, to the animals I am blessed to love.
And I love you, Magpie.
© 2017 Saraswati Chand