Basics: Helpful vs Harmful Organizations
Per the potential risk of legal action, I have decided to approach this subject of autism charities in exclusively general terms. As individual consumers, it is up to each person to do their own research and decide where they want their money to go, but I wanted to provide some tips to look for when doing this process. You can consider it a list of red flags to avoid.
Anything to do with the puzzle piece symbol:
The puzzle piece symbol was created by an autism hate group to represent how people with autism are a puzzle that needs to be solved. Organizations with this symbol more often than not are in support of creating a cure for autism, the problems with which we will be discussing in a future post. Look for the rainbow infinity symbol instead!
Focus on parents instead of autistic people:
With the exception of some parental support groups, it is a red flag whenever a group is more focused on the emotional needs of the parents of the autistic child rather than the needs of the child himself. A good place to check for this would be any kind of merchandise section of the organization’s website. If all the items have slogans related to being a parent of an autistic child rather than having autistic pride, that would be a red flag.
Lack of autistic voices:
Going off the last point, if you notice that the voices being amplified through this organization tend to be professionals or researchers rather than autistic people, that would be a red flag. If the primary goal is to educate about autism, the majority of their content should be coming from autistic people. Instead, look for an organization proud to have autistic people in leadership roles and that are honest about their representation.
Overemphasis on one method of treatment:
Unless it is an advertisement of a specific company, an educational organization should have information on a wide variety of options for people seeking assistance for autism related problems. For example, a website saying that the only way to get an autistic child to speak verbally is through their specific type of intervention, it would be time for you to check where their funding comes from. You would be surprised by how many organizations are funded by larger research groups to promote certain programs as being more effective.
Inaccessible media:
Any charitable organization should have their website and resources available and accessible to anyone. If you open a pamphlet from an organization and the colors are obnoxiously bright, for example, that pamphlet is likely not accessible to some people. Organizations that truly want to benefit the communities they serve will, at minimum, create materials that are able to be used by that group of people.
As a rule of thumb, when I am learning about a new topic I try to switch the language to apply it to another totally separate category of people. For example, if I am reading about a neurological condition, I should be able to replace the name of that condition with any other and still feel that it is being respectful. Oftentimes people with disabilities are excluded from social justice circles due to accessibility, so if you would feel uncomfortable saying it about another marginalized group, it probably isn’t ok to say about disabled people.
Basics: Autism Comorbidities
A comorbidity is any condition that is more likely to occur in the presence of another condition than without it. A common example of a comorbidity with autism is ADHD because being neurodivergent in one way makes you more likely to be neurodivergent in multiple ways. While this is the most common, there are other pairings that autism with which has been linked. Please note that some of these are based on anecdotal evidence while others are from scientific literature. Also, this page is in no way a method of diagnosing anything, I just think it is interesting to investigate commonalities among these conditions.
Dys/hyperlexia (difficulty/ease with reading and writing)
Dys/hypercalcula (difficulty/ease with mathematics)
ADHD and ADD (deficits in directing attention)
Gastrointestinal issues/disorders
Connective tissue disorders like Ehlers Danlos Syndrome
Irregular sleeping patterns
Mental health problems like depression and anxiety
Tic disorders like Tourette’s
Epilepsy and seizures
Eating disorders like binge eating or restrictive eating
Some of these can be explained as being connected to already acknowledged symptoms of autism, like having increased anxiety associated with living in a neurotypical environment, whereas the connections with others are more vague, like gastrointestinal issues. This brings the discussion of how symptoms are determined to be part of one condition or another. For example, one could wonder how many people with confirmed autism need to have seizure related conditions before seizures are considered a possible symptom of autism? Where is the line between autism and seizures in this scenario?
Research into comorbid questions seek to answer these questions using statistical analysis, but we still have a long way to go before we can say that the diagnostic criteria for autism is truly comprehensive.
Basics: Stimming
Stimming is a phrase used by the autistic community to describe self regulatory behavior. If you know someone with autism, this is probably the first thing you noticed to be different about their behavior. Common forms of stimming include rocking, hand flapping, and spinning.
Self regulation is important because society is built for neurotypicals to succeed and environments are often not sensory friendly. If you are neurotypical, I would challenge you to notice the various sensory stimuli you encounter going through your day. Then, imagine what you would do if these stimuli were physically painful to you. Are the lights on the subway too bright? Does your local coffee shop offer accessible ordering options? Just being aware of these differences is the first step to making the world a more equitable place.
As an autistic person, specific stimuli are too much for me to handle, but sometimes there is nothing I can do to avoid interacting with my environment. Bills need to be paid and I have to take care of myself. Stimming allows me to control something about my sensory experience and being able to focus on that piece I can control is what allows me to start to ignore the unpleasant parts. I still have meltdowns and shutdowns due to sensory overload, but these are much less frequent when I am able to self-regulate.
If you are in public and see a person stimming, what is your initial reaction? Do you avoid them? Do you think of them as being on drugs? Analyze your initial reaction to these situations and try to catch some of your implicit ableism. In order to work towards a more inclusive society, we all need to analyze our own biases around ability and try to check them whenever possible.
Basics: Functioning Labels
If you find yourself in clinical autism spaces often, you might have heard someone describe yourself or your child as high or low functioning. These labels can be confusing for new diagnoses, but there’s no reason to be worried. High and low functioning autism do not exist as diagnoses in any diagnostic manual, but some diagnosticians prefer to use them to describe a person’s needs and abilities.
These labels have a history of being used to divide the autistic community based on levels of support needs. This is also why the diagnostic label of Asperger’s Syndrome was used for so long, but that is a discussion for another day. Division already runs rampant in the neurodivergent community, so there is no reason to continue that in my opinion.
The preferred language is high/low support needs, as this more accurately describes what functioning labels are trying to portray. By taking a strengths based approach, we focus on what the person does well rather than over pathologizing them. Additionally, people labeled as high functioning feel that this description minimizes their struggles navigating an ableist society. High and low support needs people agree on this change in language as it is more clinically effective.
There is no need for people with higher and lower support needs to be divided in the autistic community as there is persistent overlap in symptomology regardless of categorization. By joining together as one community and diagnosis, we can share our common experiences and learn from each other more effectively.
Stereotyping Autism
Unless you know someone who has autism, you likely only see it portrayed in the media. However, it is important to examine how the media influences the medical world. Doctors and nurses and psychologists and teachers all consume media, they do not live in a vacuum, so the media’s presentation of autism can actually impact real people.
The most common, and pretty much only, representation of autism that is shown (positively or negatively) is a white cis/straight male with low support needs. This is commonly known as the Sheldon Cooper effect. If you think of autism, most people conjure an image of a little white boy who knows more about trains/superheroes/cars than most people. These characters are normally presented as comedic relief and are made fun of by the main characters. What image does that send to autistic people? To diagnosticians?
In reality, the rate of autism is (likely) no different among sex/gender/race/ethnicity but that is not what is shown to people. What happens when a black girl goes to the psychologist for an autism evaluation? Are they taken seriously? Usually not. AFAB people are significantly under-diagnosed for ASD because the symptoms tend to present differently. This is the same for other groups as well. The symptoms are being presented but they do not fit the media’s standard of autism so they are not evaluated.
Some people would say that getting a diagnosis does nothing to benefit a person. I agree with this to a degree, but being a late (early 20’s) diagnosed autistic AFAB person, I spent my formative years knowing I was fundamentally different from my peers while being told that I wasn’t. This gaslighting created a distrust in myself that has stopped me from getting a physical diagnosis for other conditions in adulthood because I feel that I can’t trust my own mind saying something is wrong.
Once intersectionality is introduced to autism, people with multiple marginalized identities are even more oppressed due to simply having more than one oppressed identity. Depending on the person’s communication level, they may or may not portray this to a doctor. There could be (valid) reasons some communities feel uncomfortable speaking with doctors or psychologists. We need to start evaluating people for autism and other conditions in a culturally sensitive manner before we can decide what autism truly looks like. Right now we only have a tiny part of that picture.
Identity vs Person First Language
I see a lot of people arguing for the use of “person with autism” instead of “autistic person” when referring to somebody on the spectrum. This tends to not be preferred by people who actually have the condition because we feel that being autistic is inseparable from our experiences as people. Additionally, there is the idea that neurotypicals (people who are not autistic) use person first language as a way of reminding themselves we are people instead of actually changing their perspective on the condition.
I like to compare this to the deaf and hard of hearing community, since I am also part of that. Nobody would tell a profoundly deaf person that they shouldn’t call themselves “deaf” and should instead say “person who is hard of hearing”. For one, it is a mouthful. Also, being profoundly deaf is such a unique experience that it is integral to the person’s identity.
This issue goes back to the idea of neurotypical people speaking for autistic people and ignoring our experiences. If autistic people are saying that they prefer this language, it should not still be a discussion amongst neurotypical people. The self advocacy project is about increasing the amount of content about autism from autistic people.
Basics: What is Autism?
Autism is the shortened version of Autism Spectrum Disorder. The disorder is a spectrum of several different traits that are separate from each other. These traits are: anxiety, motivation, impulsivity, sensory differences, attention, memory, flexibility in thinking, social use of language, social rules, and social confidence. Rather than autism being a range of more to less autistic, it is the combination of an individual’s placements on all these traits.
Autism is a developmental disability, which means it occurs before a baby is born. There is currently some research suggesting that there is a genetic tag that can be activated to cause the formation of an autistic brain, but whatever the case, autism is not something that can be developed after birth.
The traits of autism themselves are a spectrum, and even people who are not autistic will find themselves on the range somewhere. The trait of anxiety is self explanatory. The trait of motivation is the idea of executive function, or the ability to do something that one intends to do. The trait of impulsivity is also relatively self explanatory. The trait of sensory differences is the increased or decreased sensitivity to any of the five senses. The trait of attention is the ability to control and move one’s attention. The trait of flexibility in thinking is that black and white thinking that autism is known for. The trait of social use of language refers to the language abilities of the person and their verbal communication. The trait of social rules is the understanding and appropriate use of social obligations. The trait of social confidence is how shy the person is and how willing they are to initiate conversation and interaction.
We will be going into all of these traits individually in more detail later, but this is a kind of general overview. The idea that autism is a spectrum is not exactly wrong, but oftentimes people have a misunderstanding about what that spectrum looks like.