Dear Neurotypical friends…

This is SO much me. Except about the movies. I LOVE going to the movies with my daughters (one or both) but I have to wait until the movie’s been out about a week so the theater isn’t too crowded and can’t sit right next to anyone except my daughter and especially not anyone talking or eating. And if you’re sitting behind me, please don’t kick my seat!

the silent wave

I may have a social disability. I may say or do things that seem strange to you or put you off or leave you wondering.

This could–and sometimes does–lead to misunderstandings and unnecessary hurt feelings, on either side–or both sides.

I wantto be your friend. It’s just that aspects of life that the general population may take for granted as natural and intuitive are, for me, anything but. Aspects like communication (whether verbal or by way of facial expressions and/or body language), socialization, etiquette, and so on and on and on.

It’s not you; it’s me. Well, actually, it’s our intersection. It’s not a character flaw, just a neurodevelopmental variant. It happens, and it’s OK.

I’ll explain. In fact, I’ll provide you with a mini-handbook, a roadmap to the inside of the social areas of my brain.

I’m just not into gossip. I’m not into hearing about people I…

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A Letter to the Parent or Carer of an Undiagnosed Autistic Girl

I was undiagnosed until a mature adult. My children were undiagnosed because I home-schooled. While there were some definite struggles for them, especially socially in high school, autism wasn’t anywhere on the radar. We simply didn’t know about it. Having the diagnosis much younger (for all of us) would have had its own difficulties, but ultimately I think would have been a greater benefit. One of the greatest things I’ve learned throughout my life is that knowledge is power, and that understanding, knowing as much as I can about something, makes me less anxious and depressed. Knowing why we’re different would, I think, have made a big difference. As more and more people are successfully diagnosed it’s becoming clear that autism is not as rare (or gender specific) as previous generations have thought. It’s not to be feared or maligned or “cured.” I pray my grandchildren and great-grandchildren, if they’re autistic (which seems likely), grow up in a world that is more accepting of difference and less obsessed with “normalcy.” That state is purely a matter of perspective.

The Misadventures of Mama Pineapple

[Trigger warning: mental illness]

Dear Parent/Carer,

I’m writing to you in my capacity both as the parent of a little girl awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.

I know you’ve been wondering about your girl. Perhaps someone has said something – a family member, perhaps; a friend; a teacher. Or, maybe, you’ve been thinking for quite some time that this little person might be a little…different. ‘Autism’ is the thing that’s been suggested. And you’re wondering.

Perhaps you’re wondering about the formal assessment process. Perhaps you’ve already begun to get things moving, or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there too.

And so, you’re thinking you…

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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!)

Small Talk

I was reading an excellent post on M. Kelter’s experience of conversation and social input in general – Sorting Social Data (Go read it!) – that resonated with me on a lot of levels.

It’s always so helpful to hear other autistics relate and try to describe their thoughts and experiences on processing issues as it’s so difficult (BECAUSE of processing issues) for me to describe and understand them. I find reading other’s ideas and experiences triggers memories and realizations of my own.

In reading the above post I was reminded of an incident that had happened just the night before. An old friend of my oldest (also autistic) daughter was in our area playing with his band and she had come down from Oakland to join us in going to see them. We picked her sister up from work and, with a couple of hours to kill before the show, went out for Thai food. I love the fact that we can talk about all kinds of random things together, or not talk at all, and (at least as far as I’m aware) don’t feel stress or awkwardness in either case. I think we are completely comfortable together.

About halfway through our meal, two women came in and sat at a neighboring table. My daughters were discussing something, but the conversation at the other table was interfering with my ability to keep track, though I wasn’t purposely or even consciously listening to the other conversation.

Until I was.

I was trying not to laugh. It reminded me of one of my favorite movies and a script that we – both daughters and myself – use frequently:

Mashed Potatoes and Tall Actors

Except they were talking about shopping around for churches and cooking and other unrelated things. One woman had a slow, lugubrious voice and repeated herself several times on seemingly unrelated topics. It was hard to tell whether the other woman was talking too softly for us to hear sometimes or simply wasn’t responding to everything the other lady said.

I looked to see if my daughters had picked up on it and they had, their expressions looking very similar to Sandra Bullock’s at the end of the above clip.

At that point it became impossible for me to focus on almost anything else. It’s just a good thing that we have very good senses of humor. And while I don’t in general like making fun of people, sometimes it’s impossible to not find them funny. We were laughing.

I got to thinking about it today, though. As funny as it was to overhear it, it would have been absolute torture to actually be a part of it. I have a short attention span for such conversations and little of the right kind of imagination or patience to participate in topics I’m not interested in. If it’s a case of showing interest in a friend’s interest, I can do that. I can think of pertinent questions to ask and respond appropriately (I think) because I care about my friend and am able to be interested (however temporarily) for their sake. I am interested in their interest, not necessarily the topic itself.

It’s harder to monitor interest when the topic is shifted in my direction. I can talk at great length about the subjects that fascinate or affect me deeply. The subject of autism creeps into almost everything if I’m not careful. It’s such a huge part of my life – how I live, how I process things, how I teach, and so many of my students are also autistic – that I have to closely monitor myself and the people I’m talking to, even my own family. Music and teaching in general, likewise. I think I’ve gotten much better at self-regulation lately, but I still get carried away and too passionate for some people sometimes. That is always followed by anxiety and self-recrimination, which I try very hard to avoid.

But if there’s no passion in the topic on either side, merely mundane chit-chat – no, I can’t do that for long at all. I will become extremely exhausted very quickly. I’ll try to, as politely as possible, extricate myself from the situation. If that doesn’t work or isn’t possible, I’ll just walk away. If I’m part of a group that is engaging in it, I’ll just leave. I think it’s sometimes taken as rude, but it seems to me that it would be far more rude to interrupt the conversation to say that I’m leaving. Why would I want to draw attention to that fact?

I rarely participate in conversations at work. The staff room is not a place to relax and be comfortable for me. I DO like to connect with people, but I need to do it in small doses and preferably one-on-one where it’s easier to follow conversation and know when I’m expected to talk (notice I said easier, not easy). I can do the “Nice weather today”s with friends and strangers alike if I’m not overwhelmed by other issues, but if I am, you might not get an appropriate response or response of any kind. And please don’t ask me how I’m doing unless you really care and want to know the truth. Sometimes having to say, “Fine” because I know that’s the only response the asker will tolerate, makes me feel like my head will explode.

The other issue with trying to be sociable in the staff room (or other social gatherings/places) is it takes a huge concentrated effort to participate, even on topics I am interested in, and sometimes even just to listen. Sooner or later (but usually sooner) I’m aware that I’m not responding/acting/speaking in the right way. I don’t know exactly what I’ve done wrong but there’s a definite chill in the atmosphere and my brain starts screaming, “Shut up!” or “Disappear!” or “You’re an idiot!”(to myself, not the others!) And most of the time I have no idea why. It’s even worse when I know I’ve said or done something – usually expressed an opinion or preference – that is unwelcome, socially unacceptable, or politically incorrect (though probably honest and true), no matter how inconsequential it is. Then I’m going to suffer for days. Anxiety goes through the roof and I may suffer PTSD symptoms. I don’t need the punishment of others – I do it to myself!

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

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

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.

Through 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.

Still Don’t Grasp the Social Model of Disability? Try DST!

I don’t know about you, but DST does a real number on me. It’s like jet lag that lasts a week or more. It’s hard to stay asleep and hard to function normally during the day. I’m just exhausted constantly, and it’s definitely gotten worse as I’ve gotten older. Dani Alexis likens it to a social model of disability. Brilliant!

Dani Alexis

Daylight Saving Time is quite possibly the best real-world example of how the social model of disability works that I have yet seen, as this past weekend has painfully reminded me.

Like a lot of people, I spend a week or more after the time change dragged out, sleeping poorly, unproductive, and with wildly varying moods.  Even people who don’t consciously notice the difference to their own health or mood express it in their behavior: studies show that productivity tanks, people argue more, and the number of fatal accidents increases due to the time change.  In other words, DST does a real number on our quality of life – at least temporarily.

What does this have to do with the social model of disability?

The social model of disability states, essentially, that while we may be impaired by conditions that have a medical, bodymind-based cause, we are not 

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Merry Christmas

However you spend this season, I wish you happiness, love, and peace.

Meltdown Bingo: Autistic Edition

Reblogged from Silence Breaking Sound
This is an excellent breakdown of many of the triggers and kinds of meltdowns autistics have. I hope it’s helpful for those wanting to understand their loved ones and help rather than hinder their recovery from them. I also think it’s validating for us, as autistic, to remind ourselves that we are not alone in these responses. This is, for better or worse, “normal” for us. Understanding my triggers and responses has helped me process them more quickly without the guilt and helpless feelings I’ve lived with all my life.

Silence Breaking Sound

TW/Content note: Abuse of autistic people; demonstrative use of disability slur; self-injury; in-depth descriptions of being in the middle of a meltdown.

UPDATE: The article on The Mighty that led to this post has been taken down.

—

The Bingo Sheet meme has existed as a way for marginalized communities to catalog and make fun of the bad things they experience.  This usually takes the form of quoting common hurtful, invalidating or dismissive things they hear from other people.  For instance, there is American Racial Incident Bingo for the ways in which white people respond badly to instances of violence against people of color, and Fat Hatred Bingo for the ways the concern trolls and other people justify bias against fat people.

So, given this context, the autistic community was none too happy when an online disability publication called The Mighty published a Meltdown Bingo… as written from the perspective of a…

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Autistics Speaking Day

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!

In Love With Julia – Not So Much

The following post is a very articulate and thoughtful breakdown of Sesame Street’s new Autistic character and their website pages of “resources”. I have watched the videos and agree with Erin. The ableist language makes my stomach churn. (Autistic people are not magical. We’re just people.) And the person first language hits me every time it’s used.

Are there good things? Some. It’s nice they’re making an effort to educate children/people about autism. As an autistic adult I still clearly remember difficult aspects of my childhood and the struggles I had. Many of those struggles are still present in my life. I liked the parts where autistic traits were presented as just that – traits. Parts of personality. Things a person likes or doesn’t. Things to be accepted as normal and a part of that person. These might be different than neurotypical people, but they shouldn’t be considered wrong. Something to be corrected or fixed.

But the “parent support” videos are sickening and the lack of actually autistic voices troubling. These might as well have been videos about people’s pets – how to care and train and interact with them. And there are still too many things definitely WRONG. Like making your child make eye contact. Forcing your child to endure socially expected activities like birthday parties.

Why is it SO important for a child to blow out a candle? I can tell you why she never wanted to do it. Because it’s not important and has no meaning for her. Why make such a big deal about it? Will it alter her life if she doesn’t blow out candles on her birthday? Does she really have to endure parties if it makes her so uncomfortable? Is your desire for cultural “normality” more important than her physical and psychological well-being? Arg. I detested birthday parties (ANY parties). They were noisy and confusing and ultimately overwhelming. They still are. My parents invited neighborhood kids when I was four and I sat on the other side of the room watching them. She never did it again unless I asked for it. Instead of forcing that on me every year, we celebrated quietly doing something I wanted to do. They didn’t know I was autistic, but they were at least more sensitive to my needs and limits than whatever societal norms were. I’m SO thankful for that.

Anyway, Erin’s post is a much more articulate analysis of the Sesame Street “resources” than I could do.