30 Days of Autism: Autism and Passing

“Passing” in the context of autism means appearing allistic or faking normal. A good portion of autism therapies are focused on passing as a goal. This comes from either the belief that autism made invisible is autism cured, or that training an autistic person in normalcy will protect them from standing out and being bullied. Autistic people themselves may desire to pass or may feel a need to pass for employment, safety, or social reasons. That said, passing costs autistic people a lot and should not be something they are compelled to do for the sake of others.

Musings of an Aspie put it this way. “For every hour that we manage to pass, we spend two or three or five recovering. We pull off a great passing act at work and pay for it by needing the whole weekend to recharge. We juggle a full class load like our typical peers and end up overwhelmed to the point of illness by midterms.”

As Outrunning the Storm wrote,

I know a thing or two about passing. I know sometimes it’s a useful thing to be able to do. But, I also know it always has a price. I know the more you pretend to be something you are not, the more you bury the things that make you fully who you are, the more it rots you from the inside. I know that being proud of myself and having someone else hate me for it is a whole lot easier than hiding it and hating myself instead.

Teaching someone to play normal. Teaching passing. Teaching someone to be less themselves doesn’t make the autism go away. Not seeing the autism doesn’t mean it’s not there. It just means we’ve asked someone to cut out pieces of themselves to make us more comfortable. It means we’ve asked someone to hate a part of themselves because we can’t understand it.

I’ll be writing about how various autism therapies and how they approach the concept of passing over the next week.

30 Days of Autism: Autism and Functioning Labels

One of the most enduring false beliefs about autism is that autistic people are either “high functioning” or “low functioning”. In truth, there is no agreed upon diagnostic criteria for high or low functioning,  and the idea is fatally flawed.

Furthermore functioning is not static. As Courtney Barnum writes for The Mighty, ” I don’t consider myself high-functioning. I’m simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.”

Any autistic person will perform and function better when their physical needs (including sensory needs) are met, when they feel well, and when they feel safe. Likewise if an autistic person feels ill or unsafe or is itching from fabric seams they probably won’t perform or function as well.

So functioning labels are poorly defined and don’t take into account the fluid nature of functioning.  But the big problem with functioning labels is how allistic people treat autistic people based on these arbitrary labels.  From Musings of an Aspie:

If you’re high functioning, you must be fine, right? You don’t really need a little extra time to complete your work or to get instructions in writing or to sit in a quiet place so you can concentrate. You can just high function your way around all those little problems and get stuff done like a normal person.

On the flip side,  people labeled as low functioning are more likely to be abused, as described by Feminist Aspie.

People who cannot or will not pretend to be neurotypical to make you comfortable – the so-called “low-functioning autistics” – are treated appallingly in our ableist world; because their disability is visible, their personhood, feelings and strengths are ignored.

Non-speaking autistic self-advocate Amy Sequenzia writes for Ollibean

Functioning labels are useless for the autistic person. We don’t wake up every morning and think: “I am so low-functioning, I feel so sorry for myself, I am too needy and I don’t really have a chance to be valued”. We wake up and face the life we have, being the best we can be… And we don’t wake up every morning and think: “I am so high-functioning, I look almost normal. Today I will try to be normal, like my peers. I want to be just like them, indistinguishable from them”. We wake up and face the life we have, being the best we can be.

Instead of relying on inaccurate labels, remember that every autistic person is an individual.  Presume competence and provide the services and supports needed to let them succeed in their own way.

30 Days of Autism: Autism and Intelligence

There’s a popular concept of an “autistic savant”, or an autistic person with astonishing skill in one area despite deficits in other areas. The fictional movie Rain Man is the prototype for this example – simultaneously gifted with a supreme memory and calculation skills but fearful of much and rigid in his routines. The truth is most autistic people do not have Savant Syndrome,  although about half of savants are autistic.  (The other half have other developmental disabilities.)

On the other hand, clinicians initially believed autism to primarily be found in people with low intelligence scores (IQ < 70). Now we know that autistic people fall all along the intelligence spectrum. About half of people diagnosed with autism scored in the low range, which is a decrease from historic rates. The change is most likely due to better diagnosis of autistic people with average and above average IQ scores.

In autistic people particularly, IQ is not a good predictor of future independence or academic success.  Many autistic people perform well on standardized tests but struggle in other areas. Conversely many other autistic people struggle to demonstrate knowledge in traditional testing environments. Supports and accommodation can tremendously help, both with testing and with life, regardless of IQ. 

Please come back tomorrow when I’ll be writing about autism and functioning labels.

30 Days of Autism: Autism and Race

Autism has been diagnosed across all racial groups, however, there are disparities in diagnosis and possibly in prevalence among groups. In the United States, on average, black autistic children are diagnosed at older ages than white autistic children. Hispanic children are less likely than white children to receive a diagnosis at all. Unfortunately, a majority of autism studies have not gathered ethnic background information and of those that did gather such data, only some analyzed racial and ethnic data implications.

A Pennsylvania survey study designed to research reasons for delayed diagnosis found that children considered “near-poor” were diagnosed nearly a year later than children from average-income families. A study of Medicaid-eligible children found that autistic African-American children were more likely to be misdiagnosed with another condition before being correctly diagnosed, such as an adjustment or conduct disorder.

In part delayed and lower rates of autism diagnosis may be a result of “statistical discrimination“. If doctors expect autism to primarily impact white males, they will be less likely to recognize symptoms of autism in non-white, non-male patients.

For communities that speak a primary language other than English, there may be additional burdens. A survey of California pediatricians found that less than 1/3rd offered autism screening questionnaires in Spanish, for example. A series of qualitative interviews with Latino parents of autistic children found that “poverty, limited English proficiency and lack of empowerment to take advantage of services” created barriers to autism diagnoses.

Hopefully as “autism awareness” continues, all autistic people will be able to get the diagnoses and services they may need. As it currently stands, white children are significantly more likely to be diagnosed and to be diagnosed early.

30 Days of Autism: Autism and Girls

In the US, four out of five people with an autism diagnosis are male.  There is not broad consensus on exactly why such a sex disparity exists, how much is due to underdiagnosis in girls and women, versus a genuinely higher frequency in boys and men.

Some scientists are looking for neurological and genetic differences that may cause autism to present differently in girls and women. Meanwhile others are considering social factors that may account for the gap.

In a study of children displaying similar symptoms of autism, girls were much less likely to have a formal diagnosis than boys, and girls were diagnosed at older ages. Another study suggested that autistic girls have fewer “special interest” habits than autistic boys,  however clinicians argue that it’s more likely current diagnostic criteria is biased to catch typically male-coded interests (like dinosaurs and trains) more than typically female-coded interests (like makeup and pop music). 

Autism researcher Brenda Myles says gender biased socialization contributes to underdiagnosis. 

“We overtly teach social skills to girls,” They are told not to get angry, they are told to be nice, they are told to share — all of those behaviors.”

The next time someone tells you there are more autistic boys than girls, ask them why they think that is.

30 Days of Autism: Stims

Stimming, self stimulating, is something autistic people do. Stims are repetitive sounds or motions that make the person doing them feel better in some way – calmer or less scared or more entertained. Stimming might look like twirling hair, tapping a pencil, making a beeping sound, running from one wall to another over and over, chewing on a necklace or shirt collar, flapping hands, or rocking back and forth.

Stimming can provide many benefits. It can stimulate and entertain someone who is otherwise bored to tears. It can aid focus by helping someone tune out other distractions. It can provide comfort and decrease anxiety and fear. While the majority of stims are harmless, stimming is often treated as bad behavior or simply too weird to be permitted.

When it comes to autistic children in particular, there are numerous programs and websites advising teachers, therapists, and parents ways to “extinguish” stimming behavior in their children. The usual recommendations are to reward the child for going a set time without stimming, to physically stop the child when they do stim, and to replace stims with more typical “play skills” that will make the child appear less autistic.

With any autism therapy it’s important to ask, Who is this for? In the case of treatment to extinguish non-harmful stims, I’d say it’s for the benefit of others and not for the autistic person, possibly even at their expense. Obviously it’s beneficial to reduce dependence on stimming by decreasing environmental stressors that cause anxiety, and it’s likewise beneficial to teach people a variety of coping skills. But that doesn’t mean there’s a good reason to steer someone away from non-harmful coping skills they’ve already acquired.

Autism acceptance means stim acceptance. Try to tolerate the “weirdness” of others.

30 Days of Autism: Tone It Down Taupe

It’s April which means it’s Autism Awareness Month.  The infamous organization Autism Speaks asks people to “light it up blue” this month for autism awareness.  Autistic people,  however,  would prefer that you Tone It Down Taupe.  Why?

You shouldn’t light it up blue because that’s sponsored by Autism Speaks. They bill themselves as an autism charity,  but their ultimate goal is a world without autistic people.  This stands in contrast with the majority of autistic adults,  who value the existence of people like them. I will be writing more about Autism Speaks later this month. The short version of the story is, Autism Speaks doesn’t speak for autistic people. 

Another reason to steer taupe instead of blue this April is that awareness campaigns are nebulous at best, harmful at worst. Autism awareness often means perpetuating damaging falsehoods like autistic children causing parents to divorce, autistic children being “missing” or lost, autism being a tragedy, or even autism justifying homicidal fantasies on the parent’s part.

Rather than “awareness”, what’s needed is acceptance. From Unstrange Mind,

Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not. Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of autism and Autistic people in ways that presume competence and communicate value.

Acceptance means not thinking a rise in diagnoses is some tsunami or catastrophe.

The third reason you should Tone it Down Taule is because it is an autistic led initiative. Two autistic women, Shalia and Kassiane (blog here) conceived of Tone It Down Taupe in anticipation of April 2013. For 2014, TIDT raised money to give away three iPads to autistic adults who can use them as communication aids. This year they are raising money for AutHaven, an autistic retreat.

So Tone It Down,  support autistic children and adults,  and tell people about autism acceptance rather than awareness. 

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Toned down taupe me