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 crazy! 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 😉

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!

Advocacy and presuming competence

I dislike self-righteous do-gooders, and I know service isn’t something one’s supposed to talk about, because it lacks humility, or is easily pretentious, or something. But I can, even if I’m doing it wrong. I can. So here we go.

As a child, I wanted to do good and help others. In grade school, we had catechism classes, where we learned about Jesus, and how he was kind, and helped people, and asked them to be kind to one another, forgive, and accept everyone. I really liked the guy. He made sense to me. I’m not a religious person, but these precepts stuck.

When I first heard about poor children in the Third World as a kid, I thought we should do something to help them. But my family didn’t want to get involved. I insisted, and was told to shut up, already.

Later as a young teenager, I wanted to start working as a babysitter. I spoke to my parents about it. The idea was swept aside as preposterous.

Basically, I was told I couldn’t do these things, which is too bad, because helping others made sense to me.

I speak a lot about presuming competence. My family presumed my intelligence, but not my kindness or sense of responsibility. I suppose they thought my desire to help others was a childhood folly. Yes, it was a childhood thing; but it was also me. I wish I’d been supported in this.

Instead, I was encouraged to pursue the sciences, and such. As I was finishing high school, I talked about becoming a massage therapist. That, too, was swept aside as unthinkable, and I went on to study engineering, and then industrial design, though I never worked in that field in any meaningful way. It was all about fancy-shmanzy consumerism, and that didn’t appeal to me at all.

A few years later, in my mid-twenties, I applied to work as a volunteer and was then hired by UNICEF Québec as a paid employee, doing volunteer coordination on a contract basis. It was wonderful work, and I was good at it. My organizational skills were top-notch, and I did well with volunteers. I understood when my boss explained – thank you, Louise – that volunteer work was real work, and that volunteers should be treated kindly, but with all the expectations of responsibility of paid employment. So, that’s what I did, adapting to their needs and trusting them to do the job. Now that I think about it, I was presuming the volunteers’ competence, all 40 of them. I could do that. It made sense.

I later worked for UNICEF British Columbia, and Save the Children BC, and a couple of other charities in Vancouver. When I came back to Montreal a few years later, I worked again for UNICEF Québec as a volunteer. And then something happened.

I was volunteering in the store during the Christmas season, selling cards and toys and books and more cards. We had a big day on a Saturday, and at closing, the employee who managed the store that day – a former volunteer I had worked with – misplaced the day’s cash sales, a total of around $3,000.

The manager called me at home, seemingly in a panic. She told me about the problem. I was as worried as she was. She then proceeded to ask me if I had hidden the money, perhaps in order to safe-keep it. I was a little shocked, but thought about it all the same, and answered; no, I didn’t do anything with the envelope. Her attitude was strange; she asked me if I was sure, a few times. I got a little impatient. She seemed to want to put the blame on me, or to think that I was responsible, at the very least, because she said, I had been a leader before, and maybe I had “taken an initiative…”

Later, the director of UNICEF Québec asked me to come in for a chat. She took a similar approach. I was sad and disappointed that the money had been stolen, and couldn’t understand why these women wanted to put the blame on me. I told her this. Nothing more came of it, and to this day, I don’t know if they found the money. But one thing’s for sure, they lost me that day.

The reason for that was not only in wrongfully giving me the responsibility for the loss. After all, mistakes happens all the time. Rather, it was because I believed myself to be untrustworthy, as well. I was made to believe as a child that I was unkind and incapable of responsibility. So the first misguided pointing of fingers was enough for me to walk away. I wish I’d stuck with it, I really do.

By then I had started a university degree in translation, and pursued that career. I did well, working in-house for a couple of companies, and then as a freelancer. After a few years when my business stabilized, I started to do volunteer translation work here and there, for Greenpeace Canada, Oxfam, and others.

I now do cut-rate translations for a few non-profit organizations, whose leaders would rather have a steady, very cheap professional translator than rely on volunteers. It works out well. I still volunteer here and there on occasion.

Last year when I found out I was probably autistic, and after learning much about neurodivergence, my first instinct was to reach out to others. I had compensated and passed my whole life, without knowing it, and had suffered from it. I thought the least I could do was to help inform people, NT and autistics alike, that presuming competence is essential. To know that autistic people are moral, kind and willing to help as much as anyone. Mostly, I wanted others like me to break free of that cognitive dissonance: to know that they can trust *who* they are, and leave behind the guilt and shame that comes from others blaming them for *how* they are.

Because you see, when your interface is strange, people tend to project bad intentions onto you. And unless someone comes along to tell you you’re all right, it’s all too easy to start believing these people, instead of what you know in your heart.

So I started to do information sharing, translation, and education. I organized informal friendship meets between autistics, which are still going strong a year later, with the idea being picked up by others, here and in other regions.

My years working as a coordinator and tour guide (yes, that too) made me a good communicator to groups. I know how to keep people interested and translate knowledge in an informative and accessible way, and to rally people. I forged ahead, even though I was getting very little feedback. After all, in the general culture here in Quebec, the idea is still very new that autistics are full-on human beings and not pity-porn fodder or people to be managed, but never truly encouraged as competent and worthy members of society.

So it takes time for these ideas to start catching on. Now, little by little, and with much common work with neurodivergent peers, these ideas of competence and dignity are bearing fruit, and I am part of it. Positive feedback from autistics and allies makes me cry almost on a daily basis. Finally, someone is hearing me, hearing us. I am helping. It’s all I ever wanted.

And when I cry, it’s not because somehow my ego is flattered, or that I thrive on the attention. Quite the opposite, I loathe flattery and all this communication and organizing I’m doing regularly make me want to go hide under a rock somewhere, and I often do. The reason I cry is because I’m coming into my own, and really helping, and it’s hard to do, but beautiful. The feeling of being a fraud, that I cannot do this, the shame of it, is coming out as relief, and being replaced by good feelings of self-realization, satisfaction, and harmony.

This is who I am: I like to help. It makes sense to me. I wish this feeling on everyone – to be able to do what they love, what makes their heart beat stronger. For me it’s spreading knowledge and positive ideas about social justice. For others it may be statistics, or crochet, or designing cars. Flower arranging, television production, neurological research. Mechanics, video game design, or cooking. Having kids, traveling or learning languages.

It doesn’t matter what field it is, or even if it’s a field at all. If you’re passionate about something, you should be encouraged to find a way to pursue it in a way that you are able, and get support, not be side-swept as being unrealistic.

And about success… Aside from the illusion of success in our societies, isn’t real success about being happy, following your heart and knowing you are true to yourself? There’s always a way. It takes patience and perseverance. Sure, paying for groceries and rent has to come first – when doing what you love doesn’t bring in money.

Then value it as a hobby, as a dream, but please value it, because it means valuing who you are. And there’s no argument that can compare with that. When someone – anyone – is given space to define for themselves what they can and cannot do, and decide for themselves what they want to do with it or not, they can self-actualize, and it’s a beautiful feeling.


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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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