Stimmy: My Hair

I had long hair throughout my childhood. Then, as a teenager, I decided to be punk and thought I should have short hair, so I cut it.

Some time later, I had a dream. In it, I was turning my head from side to side and feeling the soft caress of shoulder-length hair brushing against my neck and the top of my shoulders. It was a beautiful feeling, and the dream was very vivid.

When I awoke, and realized that my hair was short, and that the beautiful feeling was to be no more, I cried in despair.

But I let the feeling go and got over it, and remained true to my punker decision – long hair was not in line with the way I wanted to apprehend the world, and the identity I wanted to have in it.

Then, I had the dream again as a young adult. It was the same, very vivid dream, where every sensation was so real that when I awoke, and found that my hair was short and I could not sway my head to have it caress the nape of my neck… I cried this time too, with an infinite sadness that this feeling was not real in the waking world.

By that time however, I made my own decisions, appearances of social rebellion notwithstanding. I decided to let my hair grow, and to never wear it short again.

This might seem silly to most people, that a physical sensation so inconsequential as having your hair caress the nape of your neck would become something of an important life decision. But it isn’t, it isn’t…

As I started to write this, I untied my hair. It’s usually up in a bun, so that it doesn’t distract me. But sometimes, when I want to recall that feeling, the bliss of the caress, I let my hair down. It’s a beautiful feeling, and exactly as it was in my dream, and my longing. My neck thanks me. My soul thanks me. Such is the beauty of the stim.

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I’m Autistic – Holiday tip list for friends and family

A friend jotted down these great tips in anticipation of an office party. The list is useful for the Holiday season, but also, well… any time!

Autistics are both sensitive and straightforward. We take things literally and tend to be uncomfortable looking in the eye consistently, and with loud noises, uninvited touch, strong smells and intense or flashing lights. Socializing takes effort for these reasons, and accommodations are welcome.

So pass it along! Actually, quite a few of these will be agreeable to most people, autistic or not. These don’t apply to every autistic person, of course. But they cover the basics. Please feel free to contribute corrections or additional points.
1. Relax with the perfume

Tone it down. Better yet, don’t wear any.

2. Stop laughing so loud
… or shouting across the room. Really. Ouch.

3. Avoid cross-talking
Don’t expect me to follow a conversation if there’s more than one person talking at once.

4. No paparazzi or strobes
Don’t use flashing lights or a flash camera. Many autistics are also epileptic: a flashing light can trigger a seizure.

5. Respect the bubble
Don’t touch me if you can avoid it. In fact, try to avoid any sudden movements or encroaching on personal space.

6. No force-feeding
If I decline a certain food, it’s with good reason; don’t guilt me into eating it. Just don’t. Same goes for drinks.
7. Be sincere
Don’t ask ‘how are you’ unless you want the truth.
8. I’m not interested in your gossip
It’s not personal. I’m just not interested.
9. Processing…
Just because I don’t react visibly, doesn’t mean I didn’t hear/understand/care. It may take me time to answer a question. I may also freeze, and not answer. If I do this, don’t push the envelope  – that just puts me on the spot.
10. Don’t judge
Not looking you in the eye says nothing about someone’s character. And… don’t talk to us like we’re five years old.
11. Respect the overwhelm
If I go mute or start flapping my hands or bashing my head, back off. Don’t insist or pile on more stimulation. If I go and hide to be alone for a while to regroup, let me be.
12. Go ahead and say it
Say what you mean, it makes everything easier. And if you’re not sure about something, just ask. Quietly.

Reblog: Meltdown Bingo: Autistic Edition

The melt. It is what it is. Thanks Shain for this evocative description and in-depth explanation.

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.

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 parent whose child is experiencing an autistic meltdown.  (Here’s a DoNotLink if you’re curious.)

Meltdowns…

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I have a voice – Autistics Speaking Day 2015

“… if you want to make a human being into a monster, deny them, at the cultural level, any reflection of themselves.” — Junot Diaz

Autistics Speaking Day 2015I have a voice.

Before last year, I could talk. I made all sorts of sounds that were words and these words went together and produced sentences and meaning. The meanings worked and allowed me to communicate, or so I thought. I made a lot of sounds. A lot of words.

Though I could talk, for most of my life I was not able to speak my mind.

There is this knowledge that came to me last year that I am Autistic. And this meant that for the first time, I was able to understand who I am, and care about myself.

Now I speak for myself.

The reason I can now truly communicate isn’t just that I found out I’m neurodivergent and can now understand a lot better who I am in relation to the world. That’s only a small part of it.

There are two more fantastic, beautiful reasons I can now speak my mind: the first is reading other Autistics expressing themselves, their joys, their fears, their fights to have our rights respected.

Autistics speaking all over the Internets, saying I am, we are, we matter, we rock! Solidarity, exploring knowledge, beauty in sharing and empathy. This is what makes me not a monster – being able to relate with others, a reflection of myself, in multiple variations and nuances.

The second reason I can now speak my mind is being with Autistic friends. Sharing their presence, our mutual acceptance, all of us discovering our values and our caring, our shared experiences and our discoveries. Just being together, and understanding what human relating is really about. I see you.

So yes, Autistics speaking, through talk, presence, typed words, gestures, glances, Autistics speaking to each other, with each other and to the world, being able to truly be who we are, becoming, valuing and protecting each other, and the young ones. To me, this is our common treasure, and it should be protected with all our fierceness and love.

Beyond

Don’t smile
There’s no performance
required

Don’t smile
Your lips are full
And curl just so

Don’t smile
You don’t need
to mimic or plaster

Don’t smile
I can tell you’re happy
Your bliss in repose

Don’t
The conditioned response
hides you away

Feel
your lips
and beauty

This moment
We forget
and learn
everything

Your breath and mine
Our lips
curl just so

Forget
Don’t smile
or look up to my eyes
as you’ve been told

Just be
with me
with you
eager and still

Feel me
behind the mask
I will not mimic
Help me

Don’t smile
let your face go
and feel

You don’t need to know
The color of my eyes
Or to follow protocol

When we are close
your lips curl just so
I feel you close, and know you

Our souls tender
the bliss

There is no me, you
In this moment, eternal
we kiss

And you and I,
interchangeable
mesh

We are beyond

Autism, mental illness and intellectual disability

Sadly, many uneducated people equate Asperger’s or autism with mental illness. And even some educated ones.

Others associate autism with intellectual disability.

And what about the infamous “Asperger’s syndrome is a form of autism without intellectual disability”? That phrase is everywhere on educational sites! What gives?

OK, so… let’s make some *real* generalizations.

  • Autism
    (includes Asperger’s syndrome, for speech talkative autistics)
  • Intellectual disability
  • Mental illness

Three. Different. Things.

Now, because we are human beings, some autistics have an intellectual disability , and some autistics have mental illness. But…

  • most autistics have normal intelligence (high or low or in the middle), and
  • aside from depression and anxiety which are rather common for us, mental illness is unrelated with autism.

The need of people to categorize things into boxes of stuff they think they know, even by professionals who should know better, is detrimental in so many ways. Just because many autistic people act in ways some find odd, or may be unable to speak to communicate, or have trouble processing information, or demonstrate any other difference which the average person may not immediately understand, doesn’t make them anything else but autistic.

So people, get your facts straight.

Autism does not equate with intellectual disability, nor is it in any way a type of mental illness. This is useful to remember especially in making educational choices and avoiding the prescription of drugs until it’s certain they are needed.

But on the whole, what really matters? Remembering that everyone deserves respect and to have their rights protected.

Here’s a link to a vlog published yesterday by Amythest, who is awesome (please watch her other videos if you haven’t!): https://youtu.be/zhNksSReaQk. She writes in the video description:

“We, the a/Autistic community, need to stop equating ‘intelligence’ with worth. Intellectually/cognitively disabled a/Autistics exist. Intellectually/cognitively disabled people are just as worthy of respect as anyone else. All disabled people deserve the same dignity that non-disabled people do.”

My point:

Too often, presumptions linked to low intelligence or mental illness are used as an excuse to exclude people (including autistics) and treat them poorly, take away their rights and generally dismiss them from society. This should not happen. Not for education, not for freedom and self-determination, not for proper support, not for any kind of inclusion that yes, should be taken for granted and insisted upon for everyone, whatever their level of intelligence, mental health status or neurology.


Misophonia, or why my dad wasn’t allowed to hum

“Daaaaaaaad, stop humming! Waaaaaah!”

I remember these distressing episodes very well, which also happened with whistling, and various other sounds. Coming from a kid, this can be dismissed as being capricious, or controlling, whatever. My parents were all right and indulged me… especially after my doctor, bless the man, said my weird outbursts should be tolerated and allowed to peter out on their own.

But as an adult, when you have no idea why benign sounds are driving you up the wall, it can be guilt-inducing and cause a lot of tense situations. Who wants to feel angry for no apparent good reason? Was I evil or a friggin’ princess!? Well, no. It’s misophonia.

So, what is this misophonia I speak of?

Wikipedia is ever helpful, describing it as a “rarely diagnosed disorder, commonly thought to be of neurological origin, in which negative emotions (anger, flight, hatred, disgust) are triggered by specific sounds. The sounds can be loud or soft. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff and is sometimes referred to as selective sound sensitivity syndrome.”

Okay. But what I found even more helpful was the Symptoms section, which reads:

“People who have misophonia are most commonly angered by specific sounds, such as slurping, throat-clearing, nail-clipping, chewing, drinking, tooth-brushing, breathing, sniffing, talking, sneezing, yawning, walking, gum-chewing or popping, laughing, snoring, swallowing, gulping, typing, coughing, humming, whistling, singing, certain consonants, or repetitive sounds. Sufferers experience fight/flight symptoms such as sweating, muscle tension, and quickened heartbeat. There have been some anecdotal reports of unwanted sexual arousal. Some are also affected by visual stimuli, such as repetitive foot or body movements, fidgeting, or movement they observe out of the corners of their eyes. Intense anxiety and avoidance behaviour often develops, which can lead to decreased socialization. Some people feel the compulsion to mimic what they hear or see. Mimicry is an automatic, non-conscious, and social phenomenon. It has a palliative aspect, making the sufferer feel better. The act of mimicry can elicit compassion and empathy, which ameliorates and lessens hostility, competition, and opposition. There is also a biological basis for how mimicry reduces the suffering from a trigger.”

Echolalia, anyone? On the mimicry front, I’ve found that imitating the irritating stimuli can indeed help make it less overwhelming. For example, I’ll imitate the sound someone is making, sometimes spontaneously, sometimes intentionally. Or, if someone is tapping their foot at the dinner table, I’ll tap my foot at the same rhythm. Mimicry helps me cope; it feels a bit like cancelling out the effect.

Also, I encourage you to read the following article from the New York Times, which is quite well-written, and contains a number of real-life examples (and a few tips for the misophonic!): Misophonia: When a Chomp or a Slurp Is a Trigger for Outrage.

Judging from numerous online conversations on the subject over this past year, it seems misophonia is common for autistic people (and often combined with hyperacousis).

It’s quite a relief to know that it’s physiological and that so many people have a similar reaction. Knowing why it happens helps to deal with it much better – I can ask for accommodation, or echo the noise, make a matching sound to cancel it out, put in my earplugs, or walk away for a break, whatever helps.

It’s much healthier than getting all angry or panicky, without knowing why (because really, until you know, who wants to explain their anger with how annoying a sound is, it’s ridiculous, right?).

Asking for accommodation is risky. Before I knew the issue was neurological, I received a lot of negative reactions from insulted people who just didn’t get why they should stop chewing gum or making another repetitive sound “just because it annoyed me”, and I get that. Sometimes explaining weirdness just doesn’t work. But with people who know and understand, it can be worth taking a chance. Case in point:

One day in the beginning of our relationship, my partner was kissing me noisily, and I couldn’t stop laughing. Kiss, nervous giggle. Kiss, nervous giggle. After a while, I explained that the high-pitched kissing sound he made was driving me up the wall! Love the kissing, strong reaction to the “smack” sound.

Because he’s lovely, he understood and we have a great time kissing now – quietly.

I wouldn’t have known how to explain this before, or to ask for accommodation, all the more because misophonia can seem so ridiculous when you don’t know any better. It was one of those “knowledge is power, and sometimes, knowledge is love” moments, when learning about the way your body works makes for better understanding all around.

Any comments welcome, I do special requests, too. Just please don’t hum the song 😉

 

Update (October 11, 2017): A research paper published in Current Biology on February 2nd, 2017 describes the imprint of misophonia in the human brain. In short, this is the material proof of its neurological basis. Full article: The Brain Basis for Misophonia (http://www.cell.com/current-biology/fulltext/S0960-9822(16)31530-5).

Reblog: Why I Left ABA

Reblogging this view from the inside of the field by a former ABA practitioner.
A must-read article, including numerous links to testimonies by adult autistics, and the real deal on why ABA is detrimental to people who simply function differently: beyond “efficiency” for superficial behavior modification, ABA is hurtful.
To me the baseline is this: if you wouldn’t do it to a non-autistic kid or adult… then don’t do it! Thanks for this article.

Socially Anxious Advocate

Trigger Warning: ABA, ableism, institutionalized child abuse

[Image Description: A bright red door with a brass knob and a faded mail slit. To its left, there is a long, dark windowpane with some decoration and smudges. The door itself has chips in its paint and markings on it, despite the bright color. It is closed, possibly locked.]

When I first became an ABA Therapist, I was thrilled. I was actually going to use my psych degree, get paid more than minimum wage, and above all, make a positive difference in Autistic children’s lives. Or at least, that’s what I thought.

Now I look back, and the year I spent working in ABA is my single greatest regret.

When I left, it wasn’t a decision I made overnight. It was a long, difficult process, full of denial and confusion. I don’t enjoy talking about it because I did so many wrong things that…

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Bev’s What’s Your Squawkers McCaw?

Autism April isn’t all fun and games… but sometimes fun and games get us out of the gloom and on the path to sharing our common humanity. Autism is about a lot of things… and acceptance goes in all directions.

But enough with the sappy stuff. I’m going to tell you about my orange-atennaed Squawkers McCaws.

It’s a mysterious breed. To have an idea of what I’m talking about, first please take a detour here on Bev’s blog, and watch the video! Then I’m going to tell you about my Squawkers McCaw.

Here’s the link if you need to copy-paste: http://aspergersquare8.blogspot.ca/2015/04/autism-acceptance-challenge-15-whats.html. While you’re there, why not take up a few challenges to learn, and get some empowerment and community love along the way?

nest

A pair of orange-atennaed Squawkers McCaws nesting, ready for migration.

The rare orange-atennaed Squawkers McCaw

My fabulous orange antennas are my Squawkers McCaw!

They’re much too long, and stick out from my ears, like orange construction worker antennas.

They were my first really effective earplugs – blocking out mainly high frequencies, which to me are the most distressing. They’re also made from fabulously soft and malleable foam, a pleasure to squeeze and roll between my fingers before I put them in.

squishy1

This animal is squishy… oh so squishy!

I bought them at an airport, because I’d forgotten my noise-canceling earphones at home.

Since then, I’ve bought more discreet earplugs, some of which work almost as well.

But I missed the Squawkers McCaw effect, which I like a lot. The orange antennas tell people I have something different about me, and that it’s related to my hearing…

Most of the time, I don’t care if people know I’m autistic or not. I may tell them. Or just ask them to speak more slowly, or excuse me while a walk away for a break, or raise my hand to ask them to wait. And somehow the orange antennas make that less complicated. Like a construction sign on a busy road, it’s saying “Mind your driving!”

The orange-atennaed Squawkers McCaw in its natural environment. (This image vaguely reminds me of something...)

The orange-atennaed Squawkers McCaw in its natural environment. (This image vaguely reminds me of something…)

It makes me not invisible in that way, and it’s nice. Disability is sticking out, bright orange, and when people stare I smile back. Sometimes if I’m in a good mood, I’ll say “Hey! Do you like my antennas?” and giggle. Is that age appropriate? I don’t know, but it sure is fun! And it’s a good way to sort out friends and allies from the rest.

orange-atennaed Squawkers McCaw_ONE_EAR

An orange-atennaed Squawkers McCaw in the social environment of its host. “Do you like my orange antennas?”

I’m really thankful to Bev for talking about Squawkers McCaw. Not everyone can or wants to be visible, I’m sure. But for me, it makes a lot of sense.

And I know that now, more often than not I’ll choose my Squawkers McCaw orange antenna earplugs when I go out in public. Squawk!

Autism and Intelligence [Reblogged from Seeing Double, Understanding Autism]

#presumecompetence

Seeing Double, Understanding Autism

I have discussed ASD and the impact (if any) it has on intelligence with a variety of people. Recently, I’ve noticed that opinions are becoming more and more polarised. Half the people I speak to confidently proclaim that everyone with autism is a genius, while the other half confidently proclaim that autism is a learning difficulty. But these are just opinions, and in my view very damaging to people that identify as autistic for a variety of reasons.

I vividly remember one conversation I had with a neurotypical friend from school. I hadn’t “come out” to her as autistic (at the time I hadn’t “come out” to anyone as autistic).  At one point autism came up in our conversation, and she immediately stated that ‘autistic people are usually REALLY intelligent or REALLY talented’.  I remember sitting there in disbelief, trying to resist the temptation to slide down my chair or…

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