AJ Waters

Today I was sent a message by a woman I don’t know claiming we were both “Autism Momma Bears.” This is a label I’ve never once claimed or identified with. I’ve never thought seriously about my son being autistic.

I’ve only thought seriously about me being autistic.

Many months ago, I took the “Aspie Quiz” and scored pretty high. I was in a period of deep self-discovery via research about the brain. I laughed it off.

I might be smart, and I might be anxious. I probably have ADHD, but not Aspergers I thought. I laughed and moved on with my life.

Months later an article came though  my life outlining how autism looked different in girls and woman. It was like someone was reading my mind.

I was freaked out by how accurately it described both my inner and external life.

It set of weeks of frantic research that have now turned into months.

I’m still researching. There is so much to know. I’ve read many books written about autism and written from the perspective of someone diagnosed.

I’ve learned that getting a good diagnosis as an adult woman can range from difficult to impossible.

I once worked up the courage to email someone who specializes in psychological testing, including autism, in adults. She first emailed me back to say she would be happy to help me though the whole process including getting as much covered by insurance as possible. But then she wrote me again to say she was too busy to take me on at the time.

I felt defeated and have not tried again to be tested.

Now I don’t have insurance and I’m waiting to hear if I will be covered by the State Medicaid, OHP. I have no idea what testing might be covered for an adult.

At this point, most days, I believe that there is a place on the spectrum for me. The things that make me think this include my sensory issues.

I get overwhelmed and often don’t realize it until I’m already panicking. Heat, light, small spaces, loud sounds, people touching me. I often don’t consciously realize how these things are affecting me until I feel like I need to move to another space or until I’m snapping at someone for something small. Its not them, its the overwhelming sensory input.

Sensory issues alone do not equal autism. The bigger issues are what really convince me.

When in an intense conflict with someone I love (primarily my partner) some weird things can happen. First, I lose my ability to talk. I can become completely non-verbal at times, and often semi-verbal. Sometimes I have words I want to say, but I can’t get them out, other times my mind goes totally blank. It shuts off. This has a name in autism, autistic shutdown, its a coping mechanism for times of extreme stress.

I remember this happening as a child as well. It would make me angry, both at myself, but also at the people putting me in the position. It usually happened when I was sent to see therapists. It was way too out of the ordinary and way too much pressure. I would close up completely and not talk.

When I’m stressed out in conflict I can sometimes move from shutdown to meltdown, where I want to hit myself (and sometimes do), and often sob or even scream uncontrollably.

These episodes are exceedingly rare these days, though a few do stand out in recent memory and I feel deep shame when I think about them.

There was a period in my life when I was under a lot of stress and had yet to learn any of the coping strategies I have now and would sometimes have these meltdowns very regularly. When I get too deep into a meltdown I become suicidal. I see the only way out as death.

These experiences of meltdowns with suicidal ideation (I’ve never made an attempt) are part of what drove me to seek therapy. Those moments as well as with anxiety.

In that same period of life where I was having meltdowns regularly I also started experiencing intense panic attacks. More than once in a short period I thought I was dying right there on the spot and that no one could save me.

These are among the worst experinces of my life. Anxiety alone does not make one autistic, but it is a hallmark of autism in girls and woman.

Often for autistic women a long road of misdiagnoses starts with a diagnoses of an anxiety disorder.

For the record, I have no official diagnoses from a psychologist. I’ve only seen a therapist. But I’m a smart person who’s done my research, I could fit under several diagnoses, SPD, ADHD, Generalized Anxiety…. ASD?

Intelligence, I hate talking about this one, because it makes you seem like you are just trying to sound better than other people. I don’t think anyone is valuable based on their capabilities or skills. But intelligence plays into all this.

“Giftedness” is another term I hate, but its the one we have. Its a term for people with high IQs, which granted, is a hard thing to measure and controversial way of measuring intelligence. Giftedness is another “diagnosis” that comes with its own flurry of traits. I have zero doubts that all three of us, myself, my son, and my husband, fall into this category. As do many in our immediate and extended families. In my mother’s family, its probably just about everybody. I don’t talk about it much becuase there is no point in talking about it.

Giftedness tends to come with heightened sensory awareness, sensitivity to justice issues, an ease of being able to learn new things, an ability to focus deeply on an area of interest, high levels of creativity, independent thinking, and in the case of a coexisting diagnosis, the ability to create coping mechanisms.

I remember the day I brought up ADHD with my therapist and she said, “I can see you do sometimes struggle to listen carefully to what people are saying, but you are smart and are able to make up for those challenges in other ways.”

I had never heard something so profound about my life before. Looking back on my childhood that could sum up just about everything. Some things, such as language, logic, and the natural sciences, came extremely easily to me. Other things; math, social skills, coordination, and paying attention, were extremely difficult, but I found ways on my own to scrape by.

I could pass classes with no understanding of the material becuase I knew the best ways to game the system, I also knew I wouldn’t actually ever need that skill, so why bother.

Other classes I had mastered before I walked in the door.

At the time I saw myself as average, becuase it all averaged it out. But when I got to college I excelled. It came as a slap in the face when I realized I was actually pretty smart, but no one had noticed or told me. Or if they had told me I wrote it off as something all kids were told.

Last week when my Mom told me I was smart, I believed her. Like everything else, I had to learn it for myself before I could believe someone else.

People who are gifted, autistic, and female often do not look a typical autistic person. There are autistic stereotypes and we don’t fall into those. You have to look closely to see us “stimming”, which I’ve now noticed I do almost constantly with my teeth. Its hard for me to sit completely still, sometimes painfully hard, my body needs to move, pretty much constantly. Its not as obvious as hand-flapping, but its always there.

Growing up I was called wiggly more times than I care to remember. That was the one way I was constantly compared to my cousin who was diagnosed with aspergers. We were both wiggly. They put us in the same bed on vacations so we could wiggle and kick each other all night and our younger sisters would be undisturbed.

I feel like this is getting long. I could go on. I’ve been thinking about this for months and months and watching myself, looking back on my day and the places that were hard and the way I reacted to things, noticing, taking notes, and most days I come to the conclusion that yes I do fit on the spectrum. But I have fears and reservations about coming out and saying it. The biggest being that I’m worried others will look at me and call me “too able.”

I’m verbal, in fact I consider language one of my strengths. I’m often self-employed (which is actually extremely common among autistic woman). I don’t have a lot of the visible struggles that so many autistic people do. This is the trouble with autism being a spectrum, and with that spectrum being wider than ever before. With each new DSM more people are included.

I’m worried because everyone diagnosed in my extended family is male. I’m worried my own family will dismiss me or worse.

But its time I wrote this becuase people are wondering why I post about autism on facebook so much. So here it is, am I autistic? Its complicated, but probably.