Extra section related to:
Typically developing babies are reducing their attention to faces and increasing their attention to objects, [and] their social development […] soars. Moreover, rather than distracting babies from social engagement, objects and the hands that manipulate them offer new ways to share attention with others.
It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table. […]
Many argue that all people have to do this ‘sucking it up’ to some extent. After all, we cannot just act however we wish when we are in public. I agree.
However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot ‘suck it up’ long enough each day to be gainfully employed.
It’s Stressful to be Someone You’re Not
Faking it ‘til you make it may work in the short-term, but trying to sustain it in the long-term is unbelievably stressful. We all have our preferred ways of doing things. And because those ways are normal for us, they require the least amount of energy. We can do them without burning out or disappearing from ourselves in the process.
Faking it is supposed to magically smooth away our feelings of self-doubt and low confidence, but in reality it puts extra stress on the body. People who continuously act a pretense, outside their natural personality preferences, at some point will start to feel anxious, exhausted, angry and plain-old frustrated. It’s a bit like pulling the plug in a bathtub; you won’t notice much difference in the water level at first, but eventually everything will just drain out.
We are all, every day, engaged in mind-blindness against people we do not agree with or comprehend. We are all unempathic about some people and some groups, […] toward people who are not like us.
How many ‘normal’ people have enough human feeling to befriend and understand non-normative people? How many ‘normal’ people are trapped in their own ‘normal’ worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting ‘normally’ by doing all the things that, when non-normative people do them, are considered evidence of pathology.
What’s it like to be neurotypical? […]
It’s being able to fidget without it being called some specialized term which sounds like a euphemism for fidgeting with one’s own unmentionables, have a passionate interest without it being called a ‘perseveration,’ participate in classes and activities without them being called ‘therapies,’ and appreciate the small beautiful things in life without being accused of being unable to see the big picture. […]
It’s living in your own little world just as much as any autistic does, without people making a big deal out of it.
Some people get labeled because of their disability.
- Sheila does not have a disability. Sheila has a bad day. She yells at her sister. People say, “Sheila was being mean today.”
- Renee has a disability. Renee has a bad day. She yells at her sister. People say, “Renee is aggressive.”
Both satire and very serious
Managing Challenging Behaviors in Neurotypicals
Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly. […]
How do we respond to discomfort? To fear?
Let’s look first to film and literary clichés for examples…
We grit our teeth and bear it. We ball our fists and dig our nails into our palms. We bite our tongues to keep from screaming. We pinch ourselves. […]
What do all these methods have in common? They all involve the distraction of pain as a coping mechanism. […]
There’s a reason pain is the universal distractor. Pain is the only form of stimulation that our nervous systems will not acclimate to.
Sometimes, all of us have meltdowns. Not slight upsets, or moments of rage. Full blown, life sucks meltdowns. If you don’t carry an autism label and you don’t harm yourself or others while having them, they remain private moments of vented frustration one may or may not be ashamed of.
We must accept that it is a normal behavioural response to having our needs unacknowledged and unmet to lash out aggressively, to engage in attention seeking, and to do things others find annoying. Any of us would do that (and do) if put under enough pressure and if we feel unvalued and unheard.
[…] The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.
Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?
The desire to be seen is perhaps the strongest craving in a human being. […] I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you.
Followed by the series:
[…] as soon as someone says they’re on the autism spectrum, we categorize them and treat them differently.
It’s interesting the way that little label changes where the presumption lies.
If you’re NT and you decide to go explore a local park on a whim, you’re just indulging a whim. If you have ASD though, that’s ‘dangerous wandering’.
If you’re NT and you hire someone to do your cleaning or your lawn, you’re just freeing up spare time for yourself, but if you have ASD, you’re not ‘living independently.’
When I am open about being Autistic, I am handing people a weapon to punish me with. [Many times] my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. […]
Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. […]
Telling people that I am Autistic gives them the opportunity to understand me better.
It also gives them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded.
Like it or not, public perception of autism is not very diverse (yet). […] We need adjectives like ‘mild’ or ‘severe’ to help other people understand the extent of the autistic person’s needs.
There is no such thing as severe autism. There are autistic people.
Autistic people all have needs to be met. Just like everyone else.
These aren’t special needs, or different needs, they are human needs.
Autistic people need food, shelter, connection with other people, and to feel safe and valued. Just like everyone else.
Autistic people will communicate their distress when their needs are not being met. Just like everyone else. […]
They are not ‘severely autistic’– they are autistic and severely misunderstood, severely stigmatised, severely stressed, severely anxious, severely exhausted […]
My ‘high functioning’ child is not yet potty trained and still has to use diapers. We support her and teach her, but we never shame her publicly or otherwise for being Disabled and on a different developmental path than other children her age.
Wait, does that make her ‘low-functioning’? I get confused because she is also reading ‘The Hobbit’, which might make her ‘high-functioning’.
(See previous quote for context)
Deviating from the gist of the quote; it is interesting to note how – generally speaking – using diapers and reading The Hobbit are associated with respectively ‘low-functioning’ and ‘high-functioning’ in the first place.
Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity [when it is not] entirely defined by medical terms.
A diagnosis is meant to give a reason. We can say, look, you have cancer. That is why you are feeling so unwell. You have depression. That is why you are so sad. You have this, so you are that. We expect a direct correlation, a cause, a salve to soothe us against all the things in the world that don’t make sense. The things that hurt us. A diagnosis tells us if A, then B. In this way, we define and we mend and we neatly slot the world into order. A diagnosis of disability tells the world where to fit a person, what they can and cannot do, how they will be loved and love in return. It designates relationships and builds hierarchies. From the moment my sister was diagnosed, people expected it would define us, too. Her and me. When they spoke they left so much room for the wrong words, such as caretaker and burden and problem, but too little for the right ones, such as sister and friend.
Being assigned the label also became an experience of crossing over the threshold of ‘normal’ to ‘abnormal.’ […] They also continually compared their inner experiences and behaviors against an imagined standard of ‘normal.’
Extra section related to:
[…] for every behaviour or response or trait that even we think of as being ‘typically’ autistic, we can find someone on the spectrum who doesn’t have it, or do it.
We come from both genders and the inter-gender, all races and nationalities and religions and sexualities, all classes and sub-sections of humanity, and all ages too […]
But that’s only the tip of the iceberg. There are autistics, for instance, who are fine with eye contact, extroverted autistics who enjoy other people’s company […] and autistics […] who are comfortable with change and variety […]
There are autistics who have never had a meltdown, who are hypo-sensitive to sensory input, especially pain, whose stims are non-existent […] or non-obvious, who have no particular ‘special interests’, or who are hopeless with maths and/or technology, preferring the social sciences or the arts or just about anything but computers.
There are whimsical autistics, and those who are totally serious. […] There are autistics who can handle and even do sarcasm and metaphor, and those who can understand and use abstract or figurative language and/or philosophical concepts just fine.
And while many autistics struggle with friendships and/or relationships, choose not to try for them, or truly don’t want them, many others are able to build long-lasting connections with others […] There are also many autistics who have no problem with physical or verbal affection […]
There are even autistics who can read facial expressions […] Some of us [are] actually quite socially savvy, and some are just naturally ‘social beings’ […]