Fine

(This was written a while ago but another blogger posted something with the same title right before, so I’ve waited to post this.)

Somebody asks, “How are you today?”
I answer, “It’s been a hard day, actually.” But in my head I’m saying “You’re supposed to say fine. You’re just supposed to say fine. Don’t say anything more than fine.”
I can’t say “Fine.” It’s not fine. I’m not fine. It has not been a fine day.
So the other person says, “Oh, what’s wrong?”
I don’t answer. It’s not a good question, but I realize I have gone against the script and have prompted it. It’s all my fault for deviation.
In my head I try several responses.
“You probably don’t want to know the gory details.”
“You probably shouldn’t ask unless you really want to know.”
“I’m not very good at only hitting the high spots.”

I know this about myself, but depending on “how I am” – what kind of day it has actually been, and how tired I am, or if I’m anxious or overwhelmed, perhaps have already been barely coping all day (all week, longer) and am at my limit – it may be very difficult to impossible to come up with a suitable response. A response that allows you to save face and not be subjected to the actual truth. A response that lets me not feel guilty and agonize over responding in the wrong way.

I’ll probably struggle to say, “Oh, nothing.” But this is not really acceptable to either of us. You feel bad because I’ve made it obvious that I know you don’t really want to know. I feel bad because I didn’t say it to make you feel bad. I just wanted to let you off the hook.

If you continue and ask, “What’s wrong?” you’re likely to get the whole story with footnotes to make sure you not only understand the issues, but have the necessary background information, in order, play by play, in gory detail.

This isn’t because I’m completely anal or narcissistic, though I will immediately realize that’s what you think. It’s because I’m not really sure what information is important to help you empathize with me. To connect with me in a meaningful way. That’s probably a lot more important to me than it is to you. I know my empathy is often different than other people’s because different things are important to me. It’s one of the reasons small talk is so damn difficult.

So, if you ask an Aspie/Autie how they are, be prepared for the truth. Understand they will pay you the compliment of being honest, of trusting you, and will appreciate your sincere interest.
Or don’t ask. It’ll save you both a lot of frustration.

(This is autisticmotherland’s “Fine”. Different angle and perspective. Go read it!)

Samantha Craft’s New Book!

If you have been researching autism, especially female autism, for any length of time you have no doubt come across Samantha Craft’s blog, Everyday Aspergers. Her soul bared, posts are both whimsical and down-to-earth real. Sam has everything from helpful lists (because, come on, you know we love lists) of female Aspie traits, to sensitive, thoughtful poetry, to personal anecdotes from her life experience. It is all engaging and enlightening and comforting and validating for those of us seeking to recognize ourselves, our differences, in someone else. To know we’re not alone.

Sam’s beautiful book is available now from Booklogix for those in the US and will be available July 1st on Amazon. It will also soon be available internationally through Amazon.

LIB6735_C_AD_FINALThrough 150 telling journal entries, Samantha Craft presents a life of humorous faux pas, profound insights, and the everyday adventures of a female with Asperger’s Syndrome. A former schoolteacher and mother of three boys, Craft doesn’t experience ordinary everyday happenings like most. In her vivid world, nothing is simple and everything appears pertinent. Even an average trip to the grocery store is a feat and cause for reflection. From being a dyslexic cheerleader with dysgraphia going the wrong direction, to bathroom stalking, to figuring out if she can wear that panty-free dress, Craft explores the profoundness of daily living through hilarious anecdotes and heartwarming childhood memories. When she’s not laughing at the bizarreness of her days or reflecting back, then she’s sharing the serious and relevant challenges of everyday living on the autism spectrum. Ten years in the making, Craft’s revealing memoir brings Asperger’s Syndrome into a spectrum of brilliant light—exposing the day-to-day interactions and complex inner workings of an autistic female from childhood to midlife.

Autistics Speaking Day

[Autistics Speaking Day 2015]

I didn’t find out about this until Friday night and would have liked to write a post. I have plenty I want to say. But between trying to get some assignments done on Saturday (college class) and becoming socially exhausted today, I didn’t. There are so many wonderful people who did, though, and I’d like to honor their efforts and spread their words further. Be aware that there may be trigger warnings on some of the posts. Please click on the picture or follow the link to Autistics Speaking Day. I’m going to enjoy coming back to it again and again until I’ve read them all. My goal now is to have something ready for next year!

#autismspeaks10 and #actuallyautistic #autismchampions – part one

The recent attempt of actually Autistic people to be heard above (and in spite of) Autism Speak’s 10 year anniversary has been interesting, to say the least, and obviously not at all what they were expecting. Certain outlets of the media “attempted” to cover the story – including MTV, which I tried to comment on only to realize that the story had been pulled – with disheartening results. This article is reblogged from Jess (Diary of a Mom), one of the most intelligent and eloquent voices I’ve heard out there for Autism advocacy.

a diary of a mom

Screen shot 2015-03-01 at 8.39.02 AM

{image is a screen shot of a tweet: @autismspeaks On 2/25 Autism Speaks turns 10-years-old! Tell us how AS has touched your life at AS10Years@gmail.com #AutismSpeaks10}

Screen shot 2015-03-01 at 9.30.06 AM

{image is a screenshot of a tweet: @stevesilberman Autistic people have taken over the hashtag #AutismSpeaks10 to oppose negative messaging. It’s quite a thing.}

The past couple of weeks have been nothing if not colorful in the world of autism advocacy. It all began when, ahead of its 10th anniversary last Wednesday, Autism Speaks asked its 168,000 Twitter followers and 1.5 million Facebook fans to use the hashtag #AutismSpeaks10 to share “how AS has touched your life.” The response was, I would imagine, not quite what they were hoping it would be.

In an article detailing what happened next, Virginia Hughes, BuzzFeed Science Editor, wrote:

Instead of heartwarming stories of gratitude, the hashtag has sparked hundreds of angry missives from autistic people and…

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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