Advocating for autism acceptance begins with sharing knowledge and educating those who want to know more. As someone who, herself, had to start from scratch after being diagnosed I know it’s best to start with the basics: what is autism and how does it present itself.
I'm going to start with the medical definition as it is described in the DSM-V.
According to the DSM-V, Autism is categorized as:
Persistent deficits in social communication and social interaction across multiple contexts
Restricted, repetitive patterns of behavior, interests, or activities.
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).
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
These disturbances are not better explained by intellectual disability or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
I know how technical this is and I needed real-world examples to fully understand it myself so I’ve broken down the top two statements below.
A | Persistent deficits in social communication and social interaction across multiple contexts
The DSM-V describes this as:
In comparison, I choose to use the word “difficulty” rather than “deficit” as these experiences are only deficits in the eyes of neurotypical expectations.
Deficits in social-emotional reciprocity.
Difficulty knowing when it’s “your turn,” to speak in a conversation or not realizing others have lost interest in what you're saying.
Deficits in nonverbal communicative behaviors used for social interaction.
Difficulty conveying the “appropriate” facial expressions, body language, and tone (as expected by NTs) and can manifest as practicing conversations in front of the mirror.
Deficits in developing, maintaining, and understanding relationships.
Difficulty making and maintaining relationships due to the above points as well as masking your authentic self to “fit in” or appear “normal.”
B | Restricted, repetitive patterns of behavior, interests, or activities.
The DSM-V definition:
Stereotyped or repetitive motor movements, use of objects, or speech.
Repetitive movements are basically stimming which is “the repetition of physical movements or articulated noises exhibited by people, in reaction to a mental or emotional state.” Everyone stims to a certain extent as it is a way to regulate emotions. Think of the people that bounce their legs or click their pen when nervous. This is no different than an autistic flapping their hands or rocking back and forth.
Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior.
Difficulty processing changes (big or small) in The Plan™ or daily routine. It’s not unknown that many autistics thrive on routine and dislike change. However, it’s not that we dislike change as much as we dislike last-minute changes. We like to know - in advance - what is happening, where we’re going, and how long it will take.
Highly restricted, fixated interests that are abnormal in intensity or focus.
Translation: special interests. The Autistic Self Advocacy Network describes these special interests as “narrow but deep.” It’s why savant syndrome is so often assumed amongst autistic individuals.
Hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment.
Experiencing hyper or hypo sensitivity to internal and external stimuli. A strong reaction to stimuli can lead to stimming in order to cope, e.g. wearing earplugs or headphones in noisy places and using a fidget toy to stay calm.
What does Autism “Look” Like?
When you think of Autism, you typically call up an image of a young white boy obsessed with trains who flaps his hands around a lot. But Autism doesn’t have a “look.”
Why? Because anyone, no matter their gender, sexuality, age, or ethnicity can be autistic. For example, I wasn’t diagnosed until I was a 22 year old biracial woman in her third year of college.
What is the Autism Spectrum?
Most people outside of the Autistic community think of Autism as a line from less autistic to more autistic. In reality, the spectrum looks more like the image below: a circle of traits.
The Spectrum Traits
These ten traits make up the Autism Spectrum. Where an individual falls within each category doesn’t determine if they are more or less autistic, only that they are autistic. It is important to note that this online test should not be used in place of an official diagnosis, it is merely a starting point and a more efficient way to explain the spectrum.
The National Autistic Society
The National Autistic Society also describes Autism as this: “autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses. Below is a list of difficulties autistic people may share, including the two key difficulties required for a diagnosis.”
Social communication and social interaction challenges
Repetitive and restrictive behaviour
Over or under sensitivity to light, sound, taste or touch
Highly focused interests or hobbies
Meltdowns and shutdowns
As you can see there are similarities and differences in each definition and description of autism from the DSM-V to the National Autistic Society and so on. I’ve outlined each to hopefully offer a more thorough description and understanding of autism.
What is it?
Asperger’s Syndrome, up until 2013, was a separate diagnosis in the DSM from Autism Spectrum Disorder (ASD). It separated “high functioning” autistics from “low functioning” autistics.
Medical professionals now use levels of support needs ranging from level one (low support needs) to level three (high support needs). Though some argue this is not all that different from functioning labels. The general argument is that support needs can change, even on a daily basis. Some days I can manage just fine, others I need more support from others, especially when I’m experiencing sensory overload.
Why are Asperger's no longer in use?
From a clinical perspective this changed because the criteria of Asperger’s favoured male patients and exacerbated stereotypes and assumptions of what the disorder “looked like,” and who could be diagnosed.
From my experience, and that of most of the autistic community, Asperger’s Syndrome was developed by Hans Asperger who was a Nazi. He separated autistic children into the two categories. Those with high-functioning Autism were seen as valuable enough to remain part of society (note that only males were a part of this process). You can easily guess what happened to those deemed low functioning.
To wrap this up Autism is a circular spectrum of traits and experiences that range from individual to individual, but that each exist within them. Autism also falls under the umbrella of neurodiversity. Neurodiversity recognizes that some minds are simply wired differently from what is considered the “norm,” or neurotypical.
As I mentioned earlier, I use the word difficulty rather than deficit. For example, social interactions are difficult for me, but not impossible because social skills are just that, skills. They can be learned and developed over time.
This will likely become a series of posts where I discuss different parts of the autism experience to spread awareness, knowledge, and in turn acceptance.