The Hidden Gender

I really like this poster so I’m sharing. I was (and am) all of these things, except the last. Home (until I married) was always a refuge. I saw this poster first on Facebook, but borrowed it from The Hidden Village of Aspergers. An autistic mom named L. Style created it. Thanks L!

Autism and girls descriptive poster

B B Shepherd is a musician, educator, and author and can also be found at Glistering: B’s Blog

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The Sound that Surrounds Us

As an autistic person, one of the hardest things to endure and the most common factor on reaching overload for me personally is noise.

I find it impossible to sleep if it’s noisy. Sleeping in summer, when my bedroom window has to be open to catch any breath of cool air, is sketchy at best. Once upon a time I lived in a relatively rural area. I took the relative quiet for granted. The only night time noises I recall – except for the very occasional noisy neighbor – were howls from coyotes, but I never heard them in the house. For the past fifteen years or so I’ve been living in cities, in apartments. Not by choice. I can get used to the sound of traffic within reason. The steady swishing of cars down the street becomes similar to waves of the ocean, though not as soothing. While I can feel my brain expanding -relaxing? – in a delicious, calming way at the ocean, traffic noise causes a tightening, more shutdown – defensive? – sensation.

Then there are people themselves. The noise of people is excruciating. Today there is a child squealing in the neighboring building. It’s not that loud really, and not necessarily an unhappy sound, but every time it squeals it feels like my bones are going to leap out of my skin. I could close my window and turn my air conditioner on, but my energy bill is horrendous and it’s quite a lovely day. I’m trying to cut costs. Should I have to close my window because someone’s child is squealing? It’s been going on – intermittently – for hours.

noise warning

I have a soundproof headset but I find it even more uncomfortable than ear plugs. It gives me a severe headache within minutes, even at its loosest fit. I probably need to get something expensive. Something that has soothing masking noise would be nice . . . light rain or ocean waves. Having music or a video on would help drown out noise, but it distracts me too badly from whatever else I’m trying to do. I cannot write or read with music or TV on.

The funny thing is, I have a very noisy job. As a music educator I deal with not just large classes of children but all their instruments too. I enjoy an interactive classroom, and I assure you the instrumental sounds we make are not always pleasant or even cohesive music, especially this early in the year! Children need to be able to practice freely, and I give them that opportunity, especially at the beginning of class. Not all of them are allowed to practice at home. Some also live in apartments and are actually considerate of their neighbors (as I am) or are not allowed to for other reasons. It upsets grandparents. It disturbs babies. Or the parent doesn’t like the noise. Or the student just doesn’t bother. For whatever reason, many of my students do not practice at home, so I encourage them to play freely at the beginning of class. It’s something I can handle for a limited time and for logical reasons. And the music that we eventually make, and the joy the students have in making it, is SO worthwhile. My students come to understand that, while I don’t require them to be silent at the beginning and ending of class, they must be relatively quiet during class, and speak one at a time, but that’s a different issue.

HOWEVER . . . having to endure other people’s noise at home is completely different. Being woken up several times during the night by cars playing thumping loud music, people talking loudly as if at a football game, and even the homeless people going through the dumpster – it takes a toll. One of my neighbors has an extremely loud voice. Everything seems to be yelled and his laugh is like an explosion. HAHAHAHA! He stays up very late and my bedroom is next to his living room. His TV is loud too. I’ve asked for them to be quieter at night but he actually got aggressive. I just avoid them and try to live with it.

I wear ear plugs to sleep even though they are very uncomfortable for me and accentuate the noise in my head. I don’t feel rested after sleeping in ear plugs, but it beats not sleeping at all. I wear them to concerts too, at least until my ears adapt to the noise, but I don’t go to concerts often for that very reason. I don’t deal well with crowds of people either, but that’s a different issue as well. Perhaps I should have been an astronaut. I hear space is very quiet.

astronaut in space

Except for the whole fear of heights and claustrophobia thing.

Anyway, I thought I’d write something about what it’s like – being so sensitive to noise – as I sit here wearing ear plugs in the middle of the day because a neighbor’s child is squealing. It’s been all day now. I had three children and none of them screamed or squealed or yelled. Not in the house for no reason.

Why is this necessary and how do neurotypical people endure it? Most people just don’t seem to notice these things. Do you have issues with noise? If so, what have you found that helps? Have you had experience explaining it to other people?

B B Shepherd is a musician, educator, and author and can also be found at Glistering: B’s Blog

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Sorry, I Can’t See What You’re Saying…

a picture is worth a thousand words

I have begun to understand that unless I have time to “picture” what a person is saying, I often don’t “hear” them. It’s definitely gotten trickier since I have some hearing damage from amplifiers, but I now realize it’s always been this way. It might be one reason it was hard to maintain or even gain friends in school. Sometimes I might not have grasped what they were saying and probably didn’t respond in the right way, or at all. I can see how that would appear rude, weird, or offensive. I suppose it can make a person appear stupid too, in spite of the complex thought processes that might be simultaneously going through that person’s mind.

Speech doesn’t need to be slow, necessarily, but when I listen to something verbal, I have to be able to picture what’s being said. Visuals and modeling in class settings can be very helpful, even for adults. I was talking to a friend today who was talking so fast, I couldn’t keep up a lot of the time. I heard names that I knew and could picture the people, but not what was being related about them. It was very frustrating. It has only recently occurred to me that this is an aspect of my autism and that not everyone has to picture things to process language. I don’t always have trouble, but often in new or stressful situations with new information, I have to work much harder to comprehend what is being said.

In a work setting, I get a little frustrated when times, places, figures, numbers, statistics, etc. are being thrown around with no visual references. They mean little to nothing to me unless I can process them visually. Same with directions on how to get somewhere. I’m a great map reader, but don’t just rattle off directions and expect me to retain them. I won’t unless I have a visual reference for the directions or places you name. At least write them down for me, then I’m fine. Meetings are horrible, especially when there are always those few people who insist on talking in the background. It often muddies or supercedes what I’m supposed to be listening to.

It’s especially hard on the phone when, without visual interaction, I also have issues of not knowing when I can talk. Poor reception can make things even more difficult. Sometimes I can’t get a word in as it doesn’t seem to be my turn. If I try to say something, I feel like I’m interrupting. If the person I’m talking to takes over the conversation before I’m finished, I can’t hear what they’re saying because I’m still thinking about what I was going to say. I fake it a lot too. If I completely get lost, I have to ask people to slow down or start over, but a lot of the time I just pretend to hear what they’re saying and try to make occasional responses, hoping they’re appropriate. I listen for words that stand out, and if I think I’ve missed something important, I ask them to repeat it. I try not to do that too often or they won’t want to talk to me anymore!

I enjoy watching videos more than TV as I can stop and replay sections I couldn’t catch the words of, especially as I tend to love shows with witty, playful dialogue (Gilmore Girls, Buffy, Firefly, Sherlock), but they tend to talk so fast!

It’s the same when I read. Although I love words and books, I read slowly. I have to be able to picture what I’m reading. I guess that’s why I appreciate description so much. I tend to write a lot of description, too, and that’s mostly what I’ve been editing out of my currently published novel. No one’s complained about it, but it’s very long.

I also can’t listen to more than one thing at a time. Apart from just finding it annoying, it’s completely confusing. If more than one person is talking at a time I hear nothing but vocal noise. If there are a lot of people talking, it soon becomes overwhelming. I avoid those situations. In class, my students learn they can’t talk to me at the same time. They become very considerate about it when I explain. We have our noisy times – especially at the beginning and end of class – when I just deal with it, and my autistic students learn to cope with it too. But the rest of the time I’m listening very intently. Once we start really working, it can’t be chaotically noisy. It’s something of a mixed blessing.

Please never make the mistake of thinking that someone who processes slowly is of lower intelligence. In many situations they might run circles around you – mentally speaking, at least. Other distractions and eye contact are issues for another day.

How do you process language? Do you have trouble with auditory/language processing? What is your experience?

B B Shepherd is a musician, educator, and author and can also be found at Glistering: B’s Blog

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Autism and Depression

I Am Paggliacci

Yes, I know everyone is probably overusing Robin for various reasons, but I saw this and couldn’t help thinking about myself and my children, and applying it to the things I am learning. I’ve seen it or something similar before, but that was before I understood myself as I do now. Before I understood myself as autistic.

I have (since a small child) always dealt much more with anxiety than depression, but depression was a significant part of my teenage experience (which I hid from in intense interests and explained away as other things), haunted me through my twenties and thirties (and it was much harder to ignore), and almost debilitated me after the death of my mother, my one solid anchor and advocate in life. For six months I got up and went through motions, was even able to teach reasonably well (I think – I have no memory of that whole period except for darkness and drowning) and wondered if I’d ever feel “normal” (or what passed for normal to me) again.

My saving grace in life since my mid twenties, apart from my faith (the importance of which I in no way want to minimalize) has been my children. Through my rocky marriage, subsequent abandonment and divorce, severe financial need, and trying to rebuild our lives, I kept going because I had to. I know a lot of people in the same circumstances have not been as successful.

I’m not going to try to guess the causes of Robin’s depression. Nobody will ever know for sure. But I do want to say a word about understanding and acceptance. About autism and other differences. Now that I understand myself as an autistic woman, I find it easier to accept myself. No, I don’t use it as an excuse for negative behaviors, but I can allow myself to be myself. It’s very liberating. It has not banished the anxiety, but I understand it now. Knowledge is empowering.

One of the greatest stressors for autistics is the pressure to conform, to try to appear and act and even think “normal,” which is to say, neurotypically. It’s emotionally and mentally exhausting. It can be extremely depressing.

I attended a meeting yesterday to talk about the new school year. It was only a few hours long and it was great to see and connect with my colleagues again, but after a summer of relatively free expression and low interaction with others, I had myself on a very tight rein. I stopped myself from commenting so many times and still seemed to say something wrong at times, or maybe just at the wrong time (I still struggle HUGELY with this). By the time I got home my brain was shutting down and I couldn’t think straight. I slept for most of the afternoon in a dark room. At one time, that would have caused depression as well.

A prevalent comorbid condition for women on the autism spectrum appears to be depression. This depression can be caused or at least exacerbated by the constant struggle and exertion it takes for acceptance, to fit in, to seem “normal;” dealing with constant fear of bullying, sarcasm, teasing, ridicule; and the constant questioning and analyzing of ourselves (often in a negative context), wondering why we don’t understand others and situations we find ourselves in.

In fact, it is becoming clear that many women might be misdiagnosed with a host of conditions including depression, anxiety disorder, OCD, ADD, and others, that may indicate that they are actually on the autism spectrum. Remember that 1:4 ratio? Many women (and some men) do not present as clinical (predominantly male) Aspergers/autism, but a closer examination of their traits and history and a wider understanding of the way females (and some males) present these traits make the diagnosis more likely. Regardless of “why” people are autistic (and I DON’T see it as a negative thing), just knowing and accepting that you are can be extremely liberating, comforting, and validating.

I haven’t thought about depression in an immediately personal way since I began to understand what has made me different all my life. And since I’ve begun to understand and really accept myself in this context, I have not experienced any significant depression or deeply negative thoughts. Maybe I’m just resilient that way. But for those of us on the spectrum, or for those who are becoming aware that they might be on the spectrum, accepting ourselves, allowing ourselves to be ourselves even if we are still chameleons in public, can be liberating. Maybe even life-saving.

I’m sure there are many causes of depression and all kinds of people can experience it and suffer from it to different degrees. It is a human condition not exclusive to one type of person or another. But, as with any other condition/disorder/disability/difference, we shouldn’t patronize or punish the person experiencing it.

I hope that, if you are diagnosed with autism or suspect you should be, you will find out all you can about it, embrace it, find your strengths and glory in them whether others understand or not. And know that you are not alone. You’re not broken. You’re not “wrong.” You’re just different, and that’s okay. You are an incredible human being and, no matter how others see you, you are amazing.

To the person on the outside looking in: Regardless of underlying causes, to the person dealing with chronic depression, don’t just say, “It’ll get better,” “Chin up!” “Tomorrow’s another day.” That’s like throwing a life preserver that doesn’t fit to a drowning person who still has no way of getting out of the water. The sentiment is nice but is less than useless. You have no idea the depth of their pain and struggle. You certainly don’t know the reasons for it. Accept and support them anyway you can, but don’t trivialize their experience.

I’d be interested to hear from others who have successfully managed depression.

B B Shepherd is a musician, educator, and author and can also be found at Glistering: B’s Blog

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Welcome

If you’ve felt out of step with society your whole life, like me, you might just be a lost girl (or boy) – a person almost like everyone else. Except you aren’t. When you don’t understand the nuances of expression and conversation. When you become easily overwhelmed by sensory stimulation: noise, touch, smell. A million things are different, but nobody sees or experiences it. Nobody except you.

The current ratio for *diagnosed autism is 1:4 girls to boys with the “disorder.”

I respectfully disagree. I am an older woman with three grown children (two probably on the spectrum – but that’s a story for later) and have worked closely with all ages of children most of my life, both professionally and voluntarily. I believe the numbers are much closer if not equal. And the autism ‘epidemic’? The ‘crisis’? The *1 in 88?

I don’t think so. Detection is getting better, but I’m convinced autism has been around for as long as people have, and I’m sure there are way more people affected than are diagnosed.

Now that I understand why I am different, I see others (as I get to know them over time) everywhere. Girls. Women. Females with unmistakable autistic traits. Female traits, like mine. And nobody notices us because we don’t fit the profile for detection – a predominantly male profile.

If you are anything like me, you are/were a master of invisibility (except from bullies). A chameleon. A mimic. We struggle every day just to blend in but never fit in. So we remain unnoticed. With our sometimes crippling anxiety. Our social confusion. Our emotional intensity. Our many incomprehensible differences.

Lost girl.

We are also amazing. We have talents and dreams and ideas and desires that the rest of the world can’t even imagine.

As I have begun to understand myself as an autistic woman it has meant the world to me to realize that I am not the only one. That, while my personality is unique, I share a laundry list of traits with other autistic women (and men). I am not alone. I have a people.

Lost girl found!

I react badly to negativity – panic, anxiety, guilt, etc – and assume others may feel the same so I wanted to create a place that is just for us. A positive place. A place of encouragement and a place to say, “This is how life is for us, and that’s okay.” A place for art and stories and illuminating articles and humor. Please, let there be humor. I will post pictures, memes, original content, and reblog articles I’ve found helpful or entertaining. I have a lot of stories to tell and I hope you do too. Guest contributors are very welcome! Collaboration, shared thoughts and experiences, funny stories, encouragement.

No harsh opinions. No bullying. No complaining.

If you’re seeking diagnosis or therapy, or you are a person dealing with a loved one with extreme autism and looking for help, you are very welcome here, but we can’t help you with those things. I will, however, work on getting a page up for links to other sites and organizations that may prove useful to you. If you are seeking a place to vent, have people feel sorry for you, or harass others, this is not the place for you. (This site will be carefully moderated.)

So, as I get this going, I hope you’ll consider sharing a thought, a poem, an anecdote, a picture. General comments and interaction between readers is encouraged. If you are interested in contributing or have a link you think appropriate to share, leave it in the comments and I’ll contact you. It helps so much to hear the voices of others like us – those who share our experience and understand. As the rest of the world works on its ratios and defining traits and tries to catch up with us, let’s celebrate who we are.

Because we are wonderful. And we’re not lost.

*These numbers are estimates and change according to researcher, organization, country, weather, what day of the week it is, etc.

B B Shepherd is an musician, educator, and author and can also be found at Glistering: B’s Blog