Accessibility Checklist for Autistic and Neuroatypical Individuals

Author: Marie Lauzon, B.I.D. – December 17, 2019 version

Accessibility Checklist for Autistic and Neuroatypical Individuals

The following list contains things to consider when assessing the accessibility of spaces or activities according to the needs of Autistic, hypersensitive or otherwise neuroatypical individuals. Note that this list is intended to complement the common needs covered by Universal Accessibility.

When planning events or setting up venues, this checklist may be useful for maximizing accessibility, as well as alerting participants ahead of time when a potential obstacle cannot be avoided (e.g. loud sound during a music show).

For existing spaces, an on-site visit will be useful for assessing possible barriers. This information will then help atypical people know what to expect and be able to better decide how to plan an activity, or choose to avoid it.

It should be noted that the traits, sensitivities and challenges of Autistic or other neuroatypical individuals vary greatly. For example, an Autistic person may be comfortable with noise, but avoid physical contact at all cost. Another may have no issues with physical proximity or contact, and be unable to speak when many people are present. The variations are infinite! This list aims to catalogue all potential obstacles according to individual needs.

Potential Obstacles – Sensory, Motor or Functional

  • High volume noise (e.g. highway, school, airport, public event)
  • Sudden or unexpected noises (e.g. bus stop, construction)
  • Repetitive sounds
  • Loud voices (emcee, children) or loud music
  • Bright or flashing lights, or event in full sunlight
  • Flash photography or strobe lighting
  • Fluorescent lighting (neon lights)
  • No natural light
  • High level of visual movement (objects or people)
  • Strong odors/chemical smells/body odors/perfume
  • Food smells
  • Mechanical ventilation (e.g. pushed air system, fans)
  • Air conditioning/no air conditioning
  • Heated/no heating
  • Crowds or full rooms/busy venue
  • Physical contact expected (e.g. partner dances, games)
  • Socializing expected (e.g. introductions, discussions)
  • Unstable surface (e.g. moving floor, boat)
  • Rugged or slanted ground, stairs
  • Swimming activities: pool or lake, and description (algae, fish, mud, temperature, etc.)
  • Presence of insects (mosquitos, bees, spiders, etc.)
  • Presence of animals (dogs, cats, cows, horses, etc.)
  • Other :

Site Information for Personal Planning

  • Expected cost
  • Public washrooms
  • Water fountain or water/drinks sold on site
  • Food on site: none/free/for sale
    • Type of food:
    • Planned food restrictions (intolerances/allergies/vegan)
    • Are specially prepared meals possible?
  • Schedule available ahead of time
  • Planned breaks between activities
  • Option to not participate (without consequences)
  • Possibility to take a break alone
  • Quiet area away from event for breaks (indoors/outdoors)
  • Seated events: Are there sitting options? (e.g. on floor, alone vs group)
  • Seated events: Is standing/pacing acceptable?
  • Accommodation: Private or shared rooms and bathrooms/bunk beds
  • Public transportation to site available
  • Parking available
  • Holiday resort/camp: on-site transportation available
  • Venue accepts support animals (dog/cat/rat/etc.) other than certified service animals

 

For Conferences, Conventions, Fairs, etc.

  • Is seating at tables or in rows? (For note-taking, social interactions, etc.)
  • Are films or videos subtitled?
  • For speakers: Which type of microphone is used (wireless/fixed/handheld/ear piece)?
  • For speakers: Is the presentation given standing or sitting, with or without a podium or a table?
  • Roundtables, forums, etc.: Topics and questions provided in advance
  • Available technology (e.g. projector, screen, microphone, etc.)

                                                                                                                                                                                       

This is an ongoing project and items will be added as time goes on. Your comments and ideas are always welcome: lauzon.marie@gmail.com

Many thanks to Josée Filion, Marla Cable and the kind members of Aspie Québec for their ideas and suggestions.

Citation: Lauzon, Marie. Accessibility Checklist for Autistic and Neuroatypical People. Montreal, December 17, 2019. Online: https://irmazoulane.wordpress.com/2019/12/17/accessibility-checklist-for-autistic-and-neuroatypical-people/

 

[List of sources to be added]

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.

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).

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!

Non Verbal Autism (reblogged from Roses are Red for Autism)

Reblogging this clear and simple first-person explanation of what it’s like to be autistic and nonverbal. A must-read! Thanks Henry.

Roses are Red for Autism

All people communicate but not everyone talks. Some people talk a little but not conversationally. Some people say words and phrases out loud that don’t match what they really want to say.

Sometimes I use talking words but I am still very much non verbal. Saying words out loud is not always possible or accurate for me. My pronunciation of words isn’t totally clear, and I say words in different order than most people when I say them. I can very much more fully express myself using the letter board, or Proloquo2Go.

Many times I say nonsensical things like, “Larry boy!” or “Go back to green house!” and I repeat it many times for no reason. I hear myself and think, boy, I sound ridiculous; and I wish I could stop but I have no control.

When people ask me things I know exactly what I want to say…

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You don’t look…

Tonight I got my very first “You don’t look like you’re autistic.”

It was at an aspie “coffee and chat” meet with new acquaintances. Because I’m used to meetings with other autistics, my guard was down and I wasn’t expecting judgment. It was like a dip in icy water.

I shouldn’t have got upset.

But then, there’s the sensory context : the noisy cafe, the two, sometimes three conversations going on at our table, including someone who talks a whole lot and has a high-pitched voice… I shouldn’t have had coffee, of course… And coming here, downtown, where people are so much more aggressive than in my quiet, peaceful neighborhood… The sex club lighted signs on the way here. The firetruck flashing lights just outside the cafe a few moments earlier. The full cafe and all the movement. The noise. The noise, visually and sound-wise.  The ideological noise of a news story this week about discrimination and violence, which made waves everywhere and created conflict between good people.

And now, social noise.

I thought to myself, “Don’t get upset. It’s true you don’t look autistic. You know it. He’s just stating the obvious.” But my mouth was faster, as it often is when I’m overwhelmed.

I berated him on judgment and the wrongness of it. He apologized and said that he didn’t mean anything by it, or put my neurodivergent nature in doubt, but that he considered that I didn’t look autistic and that he was, in fact, envious. Others at the table stated the obvious, that he didn’t look autistic either, to which he replied that people did see it, every day… No matter how clearly we reminded him that autism isn’t visible, he insisted that his was.

Envious… I think that was the detail that broke my ability to stay calm. While I was the uncomfortable center of attention of a group of mostly strangers, in a noisy cafe, in the middle of the part of downtown Montreal known for its riots and sex clubs, he was judging my everyday life and experience after observing me for a few minutes. We hadn’t even talked. It was the statement of a gross stereotype in the midst of a group who shared, as a common life challenge, the pain to have been judged against gross stereotypes.

Simply put, his judgment of my manner and appearance was triggering, even if it was meant, for him, in a positive way.

I wish I could have told him about all the people who gave me grief as they got to know me, all the “I thought you were nice!” and “Why are you so upset?” and “Don’t be so sensitive” and “My friends think you’re weird” comments. All the trouble I’ve gotten and complaints and broken friendships because of my blunt honesty and my inability to communicate my feelings in the standard way, the complete ignorance I have of my own facial expressions or body language, unless I am working really hard at playing a role. But at that moment, I couldn’t explain anything at all. Besides, you can’t just explain your whole  life to any stranger who makes a callous remark. Especially not when your brain is numb, the fear of meltdown starts to overtake you, your core goes stiff, your limbs turn to jelly and your heart is racing.

So, I didn’t explain, I couldn’t. I asked that we change the subject, because it was upsetting to me and I might shut down. I got a very supportive reaction from him and the group.

But this subject was interesting and touched us all, so despite some efforts at changing it, the conversation continued on the same topic, and I had to leave. I didn’t want to, I was interested in continuing the debate. But I felt the overwhelm coming again, and needed to go. I told my new acquaintance that I understood what he was saying, and that it wasn’t personal, and that he shouldn’t worry about it. I hope he heard me.

I’m not angry with him. How could I be? He was only speaking his truth. But still, I wish he hadn’t judged my experience, just like that.

I wish things were easier. But here we are. I wish I wasn’t so sensitive. I wish I could think on my feet and not have my brain tilt when social interaction becomes challenging. I wish that sensory overload didn’t make me a blubbering fool. I wish, I wish.

It’s nothing really, this little snag. But sometimes, the little snags add up, and make for a big tangle.

Gestion des comportements problématiques des personnes non autistes [Restless Hands – Managing Challenging Behaviors in Neurotypicals]

An amazing article. Satirical in tone… yet very serious. See the original post by Restless Hands below. French translation by yours truly:

Voici ma traduction de ce texte génial qui vient du blogue Restless Hands… pour le ton, c’est une satire de ces articles que l’on lit si souvent sur l’autisme. Pour ce qui est du contenu, c’est très juste et sérieux!

Gestion des comportements problématiques des personnes non autistes
– Par Restless Hands

« Bon nombre d’adultes non autistes (on dit aussi neurotypiques) présentent des comportements qui sont parfois difficiles à gérer. Ces personnes ne se rendent habituellement pas compte du stress que causent leurs comportements problématiques pour les personnes autistes de leur famille et de leur entourage. Même les autistes les plus patients peuvent ressentir de la frustration quand leurs proches présentent ces comportements difficiles, car ils exigent un grand investissement de temps, de patience et d’énergie. En effet, devoir gérer régulièrement ces défis comportementaux peut être épuisant.

Parmi les comportements difficiles chez les adultes non autistes, on retrouve notamment : une exigence du maintien du contact oculaire; des demandes de contact physique fréquent; des difficultés de compréhension de la communication non verbale (sauf certaines expressions du visage fortement codifiées); de la résistance à accepter les stéréotypies et l’écholalie; une perception restreinte et rigide de ce qui constitue l’«apprentissage», l’«empathie» et les «comportements adaptés à l’âge social»; une incapacité à reconnaître les besoins sensoriels des autres; des obsessions liées aux rituels sociaux.

Voici quelques conseils qui pourront vous être utiles pour aborder de façon constructive les comportements difficiles de vos êtres chers qui ne sont pas autistes :

1) Rappelez-lui avec douceur que ses façons de communiquer, d’apprendre, de réussir et de socialiser ne sont pas les seules valables.

2) Lorsque ses comportements nuisent à votre bien-être (traitement sensoriel, communication, gestion du stress, fonctions exécutives et autres aspects importants de votre fonctionnement), n’hésitez pas à l’en informer régulièrement. Cette communication peut se faire à l’oral ou à l’écrit. Pour vous assurer de sa compréhension et obtenir de bons résultats, n’oubliez pas de bien choisir vos mots et d’utiliser abondamment les formules de politesse.

3) Préparez-vous à devoir répéter l’information au besoin. La plupart des non-autistes n’ont pas une mémoire de précision, chose que nous tenons parfois pour acquise.

4) Armez-vous de patience et de compréhension. Il peut être difficile pour les non-autistes de comprendre l’importance des intérêts particuliers et la valeur des jeux sensoriels, ou encore le manque de pertinence de la manipulation et des hiérarchies sociales.

5) N’oubliez pas de donner beaucoup d’amour à vos non-autistes et de mettre l’accent sur leurs qualités. Rappelez-vous aussi de prendre soin de vous. Même si vos proches n’agissent pas intentionnellement de façon à être une charge, les gérer par vous-même pendant de longues périodes peut causer du stress, voire de l’épuisement. Rappelez-vous de vous réserver du temps, insistez sur le respect de vos besoins et établissez un bon réseau de soutien pour vous aider à aborder les défis que les personnes non autistes amènent dans votre vie. »

Article original en anglais ci-dessous.

Restless Hands

[This is a long overdue repost from my old blog. It is both satire and very serious.It is satire in that it is very closely modeled on actual articles I see frequently online, and it borrows much of the tone and phrasing of those articles. It is serious in that I very much hope it will make the people who write, read, and share those articles think a little more deeply about what it feels like to be one of the people that those articles are about. It is also serious in that it is legitimate and honest advice for autistic people who find the actions of non-autistic people stressful and exhausting– as most of us do at times. We,  as much as anyone else, deserve to have that stress and frustration openly acknowledged. But I also hope that by turning the spotlight back on the majority, I can make…

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Presume autistic competence in intellect, and emotion, too

“If your treat an individual… as if he were what he ought to be and could be, he will become what he ought to be and could be.”
~ Johann Wolfgang von Goethe

In my adult years, after a bit of humility came my way and much effort was put into communicating kindness, yet getting nowhere with those around me in the matter, I started to wonder how this could be. This is when I discovered, quite by accident, a description of Asperger’s syndrome in adult women. And the answers started pouring in. It seems that like many autistics, I’m not adept at identifying my feelings and those of others, and communicating about them.

For example, if you tell me about something that makes you sad, I may look away and not speak. This may be understood as a lack of interest. In fact, I am processing the emotion. I don’t know quite what to do with it. I feel it deeply, and my empathy is overwhelming. I don’t respond until a few moments have passed and I decide that I’m going to say something, or give you a hug, or perhaps just look at you and be available for listening. But this takes a while to do, and doesn’t come naturally if at all. I’ve had 45 years to teach myself to do it. And still, at first glance, I seem callous.

When I am feeling happy, I will speak of what made me happy, not the feeling itself. I may come across as self-centered, or a braggart. But the joy makes me want to talk about the thing, not about me. There’s a gap. If someone is making me joyful or when I am feeling affection for a friend or a family member, I will glow. But it took me a lifetime to learn to express these feelings somewhat, so that the other person may know and share in them. Unless I do, I may seem distant, uncaring and cold. But I am not – I feel emotions very strongly.

After much reading up on the subject (there are a few references at the end of this article), I started to write. The result below is  quite a ramble. But I hope it sheds some light on our perceptions and can change a bit what we think we know about people in general.

In the last few decades, since studies have started to surface suggesting that autism does not correlate conclusively with intellectual disability (including the 2014 CDC report on autism*), the word out there for sensible practitioners and researchers has been to “presume competence” in autistics, meaning that until proven otherwise, an autistic person should be deemed as an intelligent and capable human being. But for non-autistics, this is hard to do.

As clearly as autistic self-advocates may have put the point across – Amanda Baggs, especially in her video manifesto, Judy Endow, Amy Sequenzia, Larry Bissonette, Tracy Thresher, Carly Fleischmann and numerous others – or as factually as Dr. Laurent Mottron in his research and regular public interviews and testimonials, and numerous other researchers and autism advocates and practitioners express this necessity, presuming competence is somehow still hard to put in practice.

Why? Because surely centuries of equating hand-flapping, rocking and spastic behavior with mental retardation has made it difficult to disassociate them. But also because the equation between intelligence and communication is difficult to circumvent: If one cannot communicate properly, how can one be intelligent? Yet this is intellectually easy enough to defeat. For example, it is widely accepted that Dr. Stephen Hawking is one of the foremost intellects of humankind, though he cannot speak. But this is not true, you say! He can communicate through speech with the help of a machine. And so can Amanda Baggs, Tracy Thresher, Carly Fleischmann and any non-verbal autistic person given the chance to learn, barring cognitive obstacles too great. Yet it is a fact that impaired communication still seems to provoke an assumption of intellectual disability. This needs to be consciously set aside: intellectual ability should be presumed, always. Continue reading

The slow torture of invisible autism

What if every time someone said hello to you, you were afraid?

What if every time you heard “How are you?” you felt like you were under a hot spotlight?

What if you spent your whole life being told you were an uncouth, selfish and rude person, and had no idea why you were being accused of these things?

What if you spent your whole life being told you had intentions that you didn’t even begin to understand, or that you were “weird”, and had no idea what that meant?

What if people used you, because you wanted to be nice, and then accused you of being unkind when you started to say, “Please don’t”?

What if you were inexplicably assaulted by sounds, lights, smells and physical touch, in paralysing waves?

This is what being non-visibly autistic felt like to me – a battle with ghosts, a hall of mirrors.

Diagnosis and learning about autism went a long way toward understanding these trying aspects of everyday life and relationships, understanding myself and others, and working on being well. Being autistic isn’t good or bad, it just is. But knowing about it makes a huge difference.