Category: Mental Health

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.

There is a little girl, she’s scared, angry, alone.

She’s angry at the world, the world that took away her father. The world that says she needs to be different, needs to be more “like a girl”, needs to like pink, and dresses, and dolls.

She’s drawn to blue, and red, and sports and dinosaurs. She likes cars, and motorcycles, and construction equipment. Tonka trucks and tricycles make the best toys.

More than anything else, she is lost and alone, with feelings bigger than she thought were possible. Feelings that are too big for her and for anyone else. Feelings that make her family upset, feelings she must learn to control and hide, now.

There is no where safe in this world.

As she grows she becomes better at pretending everything is ok, while feelings of rage and despair bubble just out of view. Feelings that are still too big for her small body and worried soul. There is nowhere safe to take these feelings, so she continues to control them the best she can.

There are some places that help her feel right, but these things aren’t for girls. Sports. Big strong movements like pedaling a bicycle, throwing a ball with all her strength, kicking a bag or a board, pushing a skateboard. These things calm the storm that is always hiding just out of view, at least for a few sweet moments.

The girl is the only one at the school father’s day event attending with an uncle. The only one at the childhood support group with a dead parent. The only kid pulled from class to see a consoler.

She doesn’t care about dresses, or make up, or hair, or dolls. But she does start to care about boys. The boys she finds special don’t find her special back. They always prefer the girls with the cool clothes and the done up hair and make up and skirts. So she keeps doing the things that bring fleeting peace, until there is only one thing that matters. Skateboarding. It is all consuming. Nothing else matters. Not school, not family, not even kicking things, only skateboarding.

The girl starts to find people she can trust in this new world, but the boys she likes, still don’t like her back.

She finds a family that treats her as their own, a man she trusts like a father. Until one night, when he treats her like an object. She is frozen in fear as his hands move up her legs.

Again she is reminded, there is no one and no where safe in this world.

Years later, she has found another family that again treats her like she is a loved member of their own family, until she starts thinking too much, too differently. Once the difference is too much, it cannot be overcome. She is no longer worthy, becuase of the way that she is, the way she acts, the way she thinks. What was once acceptable is no longer.

Again she is reminded there is no one and no where safe in this world.

I want to hug that girl. I want to tell her, there are safe people, and you’ve already found one. He’s still learning how to be good at it, but he will learn, and he will be there. He can handle all of you, even the dark parts, even the sad parts, even the broken parts. He will be there by your side while you dig into the feelings left buried for all those, he’ll love you as the skeletons come out of the closet. He’ll help you make the family you’ve so often hoped for. The one that can handle and love you exactly as you are.

You, will get through this. There are safe people in this world. You will find them.

The mind is a mind boggling thing. The fact that we use this tool in an attempt to understand itself shows how complex it is, and how far we are from understanding how it works.

I often hear we are in the days Galileo when it come to neuroscience. We finally have imaging devices, but they are crude and showing us things at a macro level, while the micro details still elude us. I’m a little obsessed with neuroscience right now, every other book that I’m reading has “brain” in the title. To the point my friends poke friends at it. (Angie, I’m lovingly looking at you!) I feel like this is both because of my intense curiosity, and becuase of my desire to understand myself. Maybe if I understand the biology at play I can better understand why I have the strengths and weakness I do, and maybe even work on the weaker parts.

Lately I am again being tormented by dreams. At least its not so bad that I am afraid to sleep, as its been in the past. I still vividly remember the period of nightmares I had in high school that left me sleepless at night and falling asleep in class. And more recently, about a year or two ago, I was having dreams of dying and waking up unable to breath. That was another time I was too scared to sleep. Both of those times I would read or watch TV until I was physically unable to stay awake.

This time is a little different. I’m having dreams about specific people in specific scenarios and it seems every time I dream it escalates in intensity.  This is paired with waking up feeling not well rested and tension in my neck and head. I feel like its a window to some unresolved trauma from broken relationships, but what the fuck do I know? I really wish that part of me would speak more clearly to the rest of me so I would know if there is something I can do to resolve this. Until that happens I have writing, yoga, and meditation to try and keep me grounded.

What is going on in my head!?

Finding words can often be the hardest part of life. And putting words to your deepest feelings in incredibly powerful. A huge focus of my work with the kids this summer is helping them find words. I want to give them examples when I see them struggling and then have them articulate them back to me. Sometimes I need someone to do the same for me. That can come in different forms, friends, family, professionals, but the most powerful place I find words when they don’t come for me is in art.

Carrie & Lowell has been an incredibly important album for me since I first heard the single “No Shade in the Shadow of the Cross.” I had no idea what it was about, but I could feel the heaviness, and the Christian imagery resonated deeply with me. The first time I listened to it straight though, I had to listen to it again. I listened to it daily for weeks, I learned every word and I cried and cried and cried.

There is a hurt deep at the core of who I am. A loss that had defined me since I was 4 years old. The vast majority of my life I’ve lived without my Father. He died in a horrible accident when I was not quite four and half. He was in his late 20s.

I spent my childhood feeling a profound loss and also feeling like I was never allowed to speak of that loss. I had to keep it deep within myself. I was often angry, but I kept it under wraps as best I could expressing it though various sports. You can throw a ball hard or kick your foot though a board and people don’t get too upset. I was never good at finding the words to tell anyone how I really felt. I still kind of suck at it, but I’m getting better. I have a few safe people now, and I write. I write here, and in other more personal places.

But Carrie & Lowell reached something I never was able to reach in myself with lines like

For my prayer has always been love
What did I do to deserve this?

and

Do I care if I despise this? Nothing else matters, I know
In a veil of great disguises; how do I live with your ghost?

How do I live with your ghost. Thats always been the struggle.

And then there is

Should I tear my eyes out now, before I see too much?
Should I tear my arms out now, I wanna feel your touch

Which so captures the deep visceral physical feeling of loss. To feel a loved person’s touch again. Nothing can actually communicate that feeling. But Sufjan does a damn good job.

Those past two lines are from the track “The only Thing” which resonates most deeply with me of any track on the album. I’ve struggled with feeling this loss so intensely I want to hurt myself. I’ve imagined how easy it would be to escape it all from driving off a bridge or into a tree. Then I realize I would only be passing on this same intense pain to the people who love me that dearly, and there are at least a few. I would never wish this pain on anyone, so I continue to find the best ways I can to cope, I search for healthier ways to deal with my struggles. This album provided one I didn’t know existed. Sufjan’s mourning of the loss of his mother and his reminiscing of his childhood helps me to explore those own intense feelings in myself.

I forgive you, mother, I can hear you
And I long to be near you
But every road leads to an end
Yes every road leads to an end
Your apparition passes through me in the willows
Five red hens – you’ll never see us again
You’ll never see us again