[…] 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.’
Out of context, Susan G. Goldberg