April 2 is World Autism Awareness Day. 

This sounds like a wonderful day but it’s a day the autism community dreads.

April as a whole is Autism Awareness month and I should be thrilled. 

Social media “Lights it up Blue” and people post about inclusion when in actuality, most of the time they are doing it to feel good about themselves.

“Light it up Blue” is from Autism Speaks, a unethical corporation. 

Many Autistics consider them to be a hate group and here is why:

Their main goal is to ‘end autism.’ Very little to almost none of their large budget goes to helping autistic people and their families. Rather they spend a plethora on researching for a ‘cure’ and a pre-natal test to give an option of not having autistic babies. Another part of the budget is spent on marketing material. They have videos that make it seem like autism is a monster that destroys families and lives (I’ve included two examples).

Lots of people use this month to fall into profile pictures with a blue border or blue backgrounds and #lightitupblue as ‘autism activism.’ Here’s the thing. That doesn’t do anything when you’re just doing it for a trend. 

Why blue?

Autism is stereotypically a ‘boy’s disorder.’ It’s true that boys are diagnosed earlier and more or diagnosed. That is because of the diagnostic criteria used is written with the boys typical behavior. Autistic girls usually go without an diagnosis or diagnosed later in life. Girls show different signs and behaviors. However, social media is cloaked in blue. 

Most people are aware of autism even without social media spreading awareness. It’s not awareness that is needed but understanding.

Alright, enough of that rant. Let’s bring understanding. 

When it comes to autism you will hear this terms:

Asperger’s Syndrome

Functioning labels

High functioning

Low functioning

Person- first Language

Identify-first Language

Asperger’s Syndrome has recently diverged into the autism diagnosis and it’s for the better. 

Hans Asperger was fueled by Nazi ideology and is speculated to have sent dozens of children to their deaths. Although he defended children with disabilities and talents in technical subjects from the child euthanasia program, he only did so for his own benefit. He rescued the ones that seemed favorable and beneficial to himself for career advancement and society. The ones he deemed unfavorable he sent to their death. It is no longer part of the DSM-5  (Diagnostic and Statistical Manual edition 5) but the term is still wisely used by people. 

Functioning labels: High functioning, low functioning

Functioning labels are  problematic and most likely you’ve heard them being used in regards to an intellectual disability or autism. They try to change a wide spectrum into a binary. They were developed in the 1980s to distinguish those with only autism with people with an intellectual disability and autism. They were trying to find the individuals with an IQ of 70 of lower. 

These tests for IQ weren’t designed to measure social skills or executive functioning, those needs are not dependent on a person’s IQ. Medical communities stray away from these labels but they have been adopted by the general population and it’s hard to change mindsets.

The labels try to simplify a complex spectrum. It tears away humanity from an individual and gives them terms used for a machine. People labeled with ‘low-functioning’ are infantilized, stigmatized and disregarded because of their difficulties in verbal communication. People are saddened by their ‘lost potential’ but fail to recognize the many things they can offer. High functioning people are also affected, in different ways, and can experience learn term consequences such as autistic burnout. Autistic burnout is intense mental, physical, or emotional exhaustion, often comes with loss of skill that some autistic adults experience. Many autistics deems that it stems from the effect of having to go through a world made for neurotypicals. The majority that it affects are the adults who have strong language and cognitive skills and go to school or work with neurotypical people. 

What is the experience of autistic burnout like? 

Like many aspects of autism, burnout varies greatly from person to person. Some autistic people experience it as an overwhelming sense of physical exhaustion. They may have more difficulty managing their emotions than usual and be prone to outbursts of sadness or anger. Burnout may manifest as intense anxiety or contribute to depression or suicidal behavior. It may involve an increase in autism traits such as repetitive behaviors, increased sensitivity to sensory input or difficulty with change. (Deweerdt)

In short, they don’t tell the full story.

• Alice is a talented programmer but has meltdowns when she’s stressed. She doesn’t have a driver’s license and is barely able to handle public transportation.  Because she has a hard time keeping in touch with people and isn’t sure how to navigate social situations, Alice has no friends and has never dated anyone. She’s currently unemployed because she “messes up” interview after interview.  Alice is verbal, able to mask her diagnosis relatively well, and graduated from high school/college.
• Bob is a great artist but must be frequently monitored so he won’t hurt himself stimming. He lives at home with his parents and relies on them for transportation because he can’t leave home independently.  Bob has a group of friends who also have disabilities, and they see each other often.  He currently works at the local Goodwill part-time stocking shelves.  Bob has limited verbal ability but is an articulate writer.  He graduated from high school, but didn’t attend college. (Planning Across The Spectrum)

Both are autistic but the second individual almost seems to have a more fulfilling life despite being deemed ‘low-functioning.’ Functioning labels give the impression that one is not autistic enough and dismissed. 

The DSM-V’s level of support do a good job of this but adding descriptions of the individual makes it even more effective.

On the spectrum

Please don’t think of autism as a binary spectrum but rather a color wheel. It presents the same challenges as functioning labels. Autism is different for everyone. What affects one person, might not do anything for the next, such as communicating or sensory. (I’ve included a comic for further explantation)

Identify-first vs. Person-first language 

In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity — the same way one refers to “Muslims,” “African-Americans,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children. (Brown)

There is no need to act if ‘autistic’ is a dirty word. It’s a part of who we are. It’s not a disease. I am one of the many who prefer ‘autistic’ to ‘have autism.’

Props to you if you made it to the end. Thank you for coming to my TEDTalk.

Sources:

Deweerdt, Sarah. “Autistic Burnout, Explained.” Spectrum, Simmons Foundation, 9 Apr. 2020, http://www.spectrumnews.org/news/autistic-burnout-explained/. 

“Glossary of Autistic Terms.” The Autism Advantage, autism-advantage.com/glossary-of-autistic-terms.html. 

Here’s Why You Should STOP Using Functioning Labels, Plumb, 18 Aug. 2020, planningacrossthespectrum.com/blog/why-stop-using-functioning-labels/. 

George, Kaylene. “5 Shocking Reasons NOT to Light It Up Blue for Autism Day.” Autistic Mama, Elite Cafemedia, 29 Mar. 2020, autisticmama.com/do-not-light-it-up-blue/. 

George, Kaylene. “Why I Do Not Support Autism Speaks.” Autistic Mama, Elite Cafemedia, 29 Mar. 2020, autisticmama.com/do-not-support-autism-speaks/. 

Rudy, Lisa Jo. “Making Sense of the Three Levels of Autism.” Verywell Health, Dotdash, 17 Dec. 2020, http://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233. 

Brown, Lydia. “Identity-First Language.” Autistic Self Advocacy Network, ASAN, 4 Aug. 2011, autisticadvocacy.org/about-asan/identity-first-language/. 

Burgess, Rebecca. “Understanding the Spectrum.” The Art of Autism, The Art of Autism, 5 Mar. 2019, the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/.

Me, Myself and I