Maar je ziet er helemaal niet autistisch uit Quotes

“As an autistic, I often feel forced to code-switch, to switch between two different types of behaviour: my own and that which is socially desirable.”
― Bianca Toeps, But You Don’t Look Autistic at All

“The need for structure is often misunderstood by outsiders, and even care workers. Ironically, they tend to interpret the need for structure a bit too literally, and they think everybody benefits from a daily schedule that’s been planned to the max. The notion that people with autism might experience more stress due to a day that’s been planned down to the hour (because the more that’s been planned, the more that can go wrong) is lost on them.”
― Bianca Toeps, But You Don’t Look Autistic at All

“According to the Markrams, more connections are being made in the autistic brain and brain cells respond more emphatically to each other. There’s a stronger response to stimuli, thoughts run rampant quicker. In short: the world is extremely intense for autistics.”
― Bianca Toeps, But You Don’t Look Autistic at All

“The issue autistic people have fought for for years has finally been added – as the very last symptom on list B of the DSM-5. The one thing which, to me and many others, is the most important aspect of our autism: hypo- and/or hypersensitivity to stimuli. It’s the essence of the Intense World Theory and, in my opinion (and that of the Markrams), also the source of all additional problems. All people experience stimuli. Sometimes many, sometimes few, sometimes consciously, but frequently completely subconsciously. Stimuli are the signals we receive mainly through the five senses, even though humans actually have more than five. And then there’s the stimuli that come from your brain itself: thoughts.”
― Bianca Toeps, But You Don’t Look Autistic at All

“Ik kan echt dolgelukkig worden van logica, van goed ontwerp, of van spreekwoordelijke puzzelstukjes die op hun plek vallen. Positieve prikkels, noem ik ze. Ze ‘klikken’ in mijn hoofd, waardoor de andere prikkels uitgevlakt worden. Het gevoel dat erbij hoort, doet denken aan Tetris: het moment dat je met de blokjes een lijn creëert, zie je een flits, verdwijnt de rommel en ontstaat er ruimte.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“How autistic someone looks doesn’t say much about how autistic someone is.”
― Bianca Toeps, But You Don’t Look Autistic at All

“It seems that people use a one-size-fits-all definition of autism without looking at the person in front of them.”
― Bianca Toeps, But You Don’t Look Autistic at All

“One thing that's become clear is that we aren't insensitive robots, but we may seem that way sometimes because we close ourselves off. Stimuli - and that includes emotions - are often so intense for autistics that they have developed a defense mechanism.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“Most undiagnosed autistics keep pushing - and crossing - their own boundaries. They make choices they don't really want to make, because others tell them it's fun or that's just the way you should behave. When an autistic person says that something is too loud or too bright, the answer usually is: "Get over it!" We are taught to ignore signals, to suck it up, and to definitely not listen to ourselves. People who have recently been diagnosed with autism often don't even know their own boundaries anymore; the uncomfortable feeling is so omnipresent, that listening to it seems like an impossible task.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“My first depression actually started when I was about thirteen years old. Now when I read back what I wrote in my diary at the time, it's quite clear - one page says in giant letters: "I hate this, I hate my life!" I also complained about stomach aches a lot. When I was fifteen, I really hit a brick wall. I was exhausted from copying behaviour, from trying to fit in, from acting "normal". I wouldn't go to school for days and eventually had to transfer to a lower level high school. I had a pretty negative self-image, and I couldn't understand why nothing ever worked out quite right. I was a quiet, shy girl who always stretched herself too thin and gave too much. It felt like a war going on in my head, and it was draining. My parents are still amazed I got my high school diploma, as I never had the energy to study.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“Furthermore, a lot of people still assume autism is something that mainly affects men, something De Hooge also discusses in her thesis. Right now, autism is diagnosed in men four times as often as in women. This difference used to be even bigger. I was always told this is because women are better at camouflaging and I believed it, until I read Anna's thesis. Are women better at camouflaging, or do they face more severe consequences if they don't?”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

Oh right, keyboard heroes declaring on social media that "everyone's a little autistic" - nope. According to the DSM it has to really, really affect you. People with autism will miss days at work or have trouble with relationships, friends and family. They can't keep up in school because thirty kids with clicking pens and smelly deodorant drive them up the walls. They get kicked off the sports team because, according to them, something happened that wasn't in line with the rules (which was probably true, but the autistic in question just couldn't let it go). People who arrange their shoes by colour aren't "a little autistic", they're just shoe freaks.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“I will never feel comfortable looking people in the eye, for example. I sill find that difficult. And the fact that I may do it more now, only means that on a daily basis, I spend more energy.
And that's where things start to go awry. Autistics who get better at learning how to "act normal" only end up spending more and more energy doing so. They get a normal job, yay, but in that job they have to keep up that act non-stop. They start a family, but constantly feel out of their depth. Three-two-one... Autistic burn-out.
Looking at my life, I can immediately point out at least five periods in which I had an autistic burn-out. I always thought I was just weak. A quitter. I quit three different studies, I had extreme difficulty looking after myself... And I didn't get it.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

Back to the DSM. We were at point C, a criterion I'd like to shout from the rooftops: symptoms are present from childhood, but It's entirely possible they don't manifest until challenges in your life exceed your capabilities and coping skills.
This is also referred to as the autistic burn-out: someone who was previously able to speak in coherent sentences, suddenly can't utter a single word or bursts into tears at the slightest change. It's the result of years of asking too much, of hiding and of "acting normal". The person in question shuts down and seems to become more autistic. But that's not the case: The person was always this autistic, they just ran out of energy to hide it.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“Problems with executive functions aren't explicitly mentioned in the DSM-5 as a symptom of autism, but I believe they're an essential part of the disorder. Executive functions oversee all kinds of processes in the brain, from self-control to executing complicated movements. People who have trouble with their executive functions struggle with dividing large tasks into smaller subtasks, separating important things from minor details and breaking patterns.
You might have noticed how remarkable it is that some brilliant autistics aren't able to cook, eat on time or keep their houses tidy. Other autistics stick to the rules of the systems they have created for themselves so strictly, that even the smallest change can really upset them. They're two sides to the same problem: trouble with executive function.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“Imagine your own senses, multiplied by ten. A passing shopping trolley sounds like a low-flying fighter jet, a little breeze feels like an icy hand in your neck. Tight clothing becomes a metal harness you can't move around in and sunlight through the trees hits you like the flashing of a stroboscope you accidently looked straight into.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“The Markrams argue that more autistics could use their potential if their environment would enable them to do so.

Instead of showering autistics with stimuli so they 'learn how to deal with it' or drilling them like soldiers, they argue for a calm, predictable environment for autistic children, so they are less likely to close up or develop anxieties. This way they can develop the positive aspects of their armed-up brain.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“as the Markrams explain in their scientific publication from 2010:
The intense world that the autistic person faces could easily become aversive if the amygdala and related emotional areas are significally affected with local hyper-functionality. The lack of social interaction in autism may therefore not be because of deficits in the ability to process social and emotional cues, but because a sub-set of cues are overly intense, compulsively attended to, excessively processed and remembered with frightening clarity and intensity. Typical autistic symptoms, such as averted eye gaze, social withdrawal, and lack of communication, may be explained by an initial over-awareness of sensory and social fragments of the environment, which may be so intense, that avoidance is the only refuge.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“That doesn't just explain autistic people's hypersensitivity, but also their apparent insensitivity and limitations in social communication. We close up in the overwhelming storm of stimuli, like a computer that freezes when you give it ten different tasks at the same time. Then our hyper-fanatic brains make sure we remember that scary, nasty experience very well and will try to avoid it in the future.”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“And that's often what I do. Close myself off. Turn away . . . I dread auntie Mary's birthday because I know I'll be overwhelmed by the three big kisses, the loud laughter and the smell of buckets of old-lady perfume.
All autistics I know recognise this. We close ourselves off to stimuli, and then get blamed for not having any empathy. For not understanding auntie Mary's good intentions. But to what extent does auntie Mary understand us? To what extent does she accept that our way of processing stimuli is different from hers?”
― Bianca Toeps, Maar je ziet er helemaal niet autistisch uit

“The tornado of stimuli, or the mere prospect of it, can be so severe that the autistic person decides to do nothing”
― Bianca Toeps, But You Don’t Look Autistic at All

“Before my executive functions start to jam, a stream of thoughts and stimuli is set in motion that no amount of filtering can remedy. You could compare it to one of those machines that shoots out tennis balls, except that it’s set to Serena Williams while I’m here having my first tennis lesson. With every tennis ball that zooms past me, the adrenaline rises. That’s how it works when someone with autism wants to tidy up.”
― Bianca Toeps, But You Don’t Look Autistic at All

“the stimuli caused by stims, physical sensations or crowded places seem to activate a clean-up system that, while processing these self-chosen stimuli, also clears away the unpleasant stimuli.”
― Bianca Toeps, But You Don’t Look Autistic at All

“Apart from overstimulation, understimulation is also common in autistic people. Some autistics, for example, barely seem to feel pain or cold, ignore the urge to pee to the point of it resulting in a bladder infection, or forget to eat or drink for a whole day.”
― Bianca Toeps, But You Don’t Look Autistic at All

“Is an autistic you know stuck inside their own head? Maybe they don’t mind if you take charge for a minute. “Will you come to Ikea with me? I need to pick up a rack.” But do bear in mind that it’s important not to burden the autistic with difficult questions or decisions. And definitely don’t force anyone; to someone who is also auditorily overstimulated, Ikea would probably be the last place they’d want to go. I, on the other hand, usually love to go there.”
― Bianca Toeps, But You Don’t Look Autistic at All

“I’m tired, I’d love to just go to sleep, but at the same time my head just keeps racing. There’s a schedule with a thousand things to be done and I’m way too hyper to go to sleep. But I’m tired. But I have things to do. But I’m tired. I get into a spiral I barely manage to get out of.”
― Bianca Toeps, But You Don’t Look Autistic at All

“Autistics will never ‘learn to cope with it’. The only thing they will learn is to ignore their own body’s signals. And that can be incredibly harmful.”
― Bianca Toeps, But You Don’t Look Autistic at All

“Support the autistic person in their quirky hobbies and obsessions; these are the moments they’re at their happiest. Whether it’s a K3 show or an afternoon of plane spotting, embrace it. Don’t laugh at anyone, don’t mock people. Don’t say “You want to see that movie again?” or “You already have five hundred Star Wars figurines!”, but look into it and find out what makes that one particular figurine so special. People who are as happy as a child when indulging in their hobbies, that’s something I really love to see.”
― Bianca Toeps, But You Don’t Look Autistic at All

“Is there something important you’d like to discuss with me? Email me or send me a text. This gives me time to think things over, which helps me protect my boundaries and get my points across clearly.”
― Bianca Toeps, But You Don’t Look Autistic at All

“Older people tend to say you shouldn’t argue via text message because it doesn’t convey any emotions. But in fact, that’s exactly the advantage of text. Plus, if you do want to convey emotions, they’ve come up with something very clever for that: emoji. This, too, is typical for most autistics I know. We joke about it amongst each other: “A phone you can make calls with? Who’d want that?”
― Bianca Toeps, But You Don’t Look Autistic at All