Terms

Autism or Autistic

For example “Joy has autism” or “Joy is autistic”.  Note: this is not a hard-and-fast rule but rather a preference:  I’m not wild about the use of “autistic” as a noun (ex/ “Joy is an autistic” or “autistics really like headphones”).  Instead, I prefer referring to a person with autism as “an autistic person” or “a person with autism”, and I prefer referring to a group of people who have autism as “autistic folks” or “folks with autism”.

ASD (Autism Spectrum Disorder)

For example “Joy has ASD” or “Joy has Autism Spectrum Disorder”.

High or low support needs

Joy has low support needs around X activity, but high support needs around Y activity.

[In response to my disclosure] “What does autism look like for you?”

If I disclose to you that I have autism, this is the most useful, validating, supportive question you can ask.

[In response to my disclosure] “Is there anything I can do to make your life easier?”

If I disclose to you that I have autism, this is the second-most useful, validating, supportive question you can ask.  See my accommodation requests section above.

[In response to my disclosure] “I really don’t know how to respond effectively right now.  I’m going to go educate myself and get back to you as quickly as I can.”

If I disclose to you that I have autism and you find yourself unsure of how to proceed (but are clear that you don’t want to cause harm and have no idea what reaction would be harmful), SAY THIS.  It’s totally ok to ask for time to process and learn, just make sure you actually SAY THAT rather than reacting with silence.  Note: If you say you’re going to take some time to process and learn, make sure you actually do that and then GET BACK TO ME.

Terms / Questions / Comments / Reactions TO AVOID

[In response to my disclosure] Silence.

If I disclose to you that I have autism, and you respond with silence, this feels analogous to inaction from a lifeguard or EMT.  When I disclose, it’s an incredibly vulnerable moment for me. Your silence leaves me feeling isolated, othered, and neglected.

If you need a minute (or an hour or a day or a week) to percolate, THEN SAY THAT.  Say “I need some time to collect my thoughts.  Can I get back to you with my response when I’m ready?”  Note: MAKE SURE YOU GET BACK TO ME.

[In response to my disclosure] “What does that mean?” or some other variation of asking me to educate you about autism.

If I disclose to you that I have autism, and you respond with asking a ton of questions about what autism is, I’m not going to engage with you.  While I’m totally ok with educating you about MY EXPERIENCE (as I am literally the only person on the planet who can tell you what’s going on inside me), I am NOT ok being everyone’s encyclopedia for all things autism (or really any topic).  I created this document to avoid having to pull 10,000 words on autism from my memory.

[In response to my disclosure] “I’m so sorry you have autism.”

If I disclose to you that I have autism, there is NO reason for you to apologize.  Autism is a disability, but let’s be clear on what that means. There are two models of disability (from @claudiaalicklove):

1. The medical model of disability suggests that if you’re finding something inaccessible, that’s a YOU problem. You must engage with the medical-industrial complex to get an official label and diagnosis, or you are not allowed access to resources that would make things accessible to you.
2. The social model of disability recognizes that if you’re finding something inaccessible, that’s a problem of your ENVIRONMENT. Choices made by your society in how it designs public spaces and information is what makes them inaccessible to you.

Much of what makes autism disabling is my environment: fluorescent lights, loud noises, forced social interactions, and lack of accommodations.

If you are “sorry” to hear that I have autism, then advocate for design choices in public spaces and accommodations that make the world accessible to folks who have autism.

Autistic (noun)

This is not a hard-and-fast rule but rather a preference:  I’m not wild about the use of “autistic” as a noun (ex/ “Joy is an autistic” or “autistics really like headphones”).  Instead, I prefer referring to a person with autism as “an autistic person” or “a person with autism”, and I prefer referring to a group of people who have autism as “autistic folks” or “folks with autism”.

Asperger’s or Aspie

Asperger Syndrome is no longer a diagnosis; rather, it’s symptoms have been folded into the broader diagnosis of Autism Spectrum Disorder as of 2014. Sources prior to 2014 will still reference it.

“Asperger Syndrome” was discarded because (from Nature.com):

• Hans Asperger was an ACTUAL Nazi
• Under Hitler’s regime, psychiatry – previously based on compassion and empathy – became part of an effort to classify the population of Germany, Austria and beyond as ‘genetically’ fit or unfit. In the context of the ‘euthanasia’ killing programs, psychiatrists and other physicians had to determine who would live and who would be murdered. It is in this context that diagnostic labels such as ‘autistic psychopathy’ (coined by Asperger) were created.
• Asperger was complicit in this Nazi killing machine. He protected children he deemed intelligent. But he also referred several children to Vienna’s Am Spiegelgrund clinic, which he undoubtedly knew was a center of ‘child euthanasia’.

In conclusion, he’s a bad dude.

Referring to someone with autism as “an aspie” is a reference to Asperger.  Again, he’s a bad dude.

High- or low-functioning labels (i.e. “You’re so high-functioning!” or “That person is low-functioning”)

High-functioning and low-functioning are outdated labels that are applied to autistic folks by non-autistic folks’ PERCEPTION of how well they can perform neurotypicality. The perception of non-autistic folks’ does not in any way equate to the reality of the lived experience of autistic folks.  Rather than supporting autistic folks, these labels have the reverse impact in the following ways (from GrayMattersMD.com):

• What is considered “functioning” is subjective, making the term unhelpful in actually communicating the experience of someone with autism.
• People who are deemed “high functioning” often get their symptoms minimized and don’t get the support they need.
• Those deemed “low functioning” face large amounts of stigmatization.

Superpowers

Some websites (even one of my favorites – embrace-autism.com) uses this phrase.  AND many autistic folks (including myself) dislike this phrase as it suggests that autistic folks need for some kind of extraordinary skill to compensate, make up for, or justify being autistic.  No autistic person needs to have a “superpower” to justify their autism.

“So you’re like Rain Man / Sheldon Cooper!”  Or “Are you super good at math?”

Each of these assumes a stereotype of autism that are not based in the reality of what living with autism is like and are problematic for the following reasons (from ResearchAutism.org):

• The stereotypes around autism as presented in the media are EXTREMELY inaccurate and not at all representative of the actual experience of autism. Frequently, autistic characters are not written by or performed by folks who actually have autism.  They are therefore leaning on tropes and stereotypes, thereby perpetuating them.
• The movie “Rain Man” is about a person with Savant Syndrome, which is a separate experience from autism, though it often co-occurs. Not all autistic people are savants (in fact only 10% are).  Not all folks with Savant Syndrome also have autism.

“Have you seen [X show featuring stereotypically autistic savant character]?  It’s so realistic!”

I take issue with this statement for two reasons:

• If you don’t have autism, then you have absolutely no context for what is and what isn’t a realistic portrayal of autism. It doesn’t matter how close you are to someone who has autism.  It doesn’t matter how “grounded”, “realistic”, “authentic”, “accurate”, or “believable” it appears to be to you.  If you don’t have autism, you don’t get to decide what is an accurate portrayal of autism.
• I dislike most overt portrayals of autism. The portrayals I enjoy are often ones where the character is coded as autistic but not explicitly stated as such.  This frequently arises because the screenwriter wrote a character like themselves and then later found out they were autistic.  Portrayals that are written explicitly to represent autism are typically forced, stereotypical, infantilizing, exaggerated, and inauthentic.  Again, if you don’t have autism, you don’t get to decide what is an accurate portrayal of autism.

“You don’t look like you have autism.”  Or “You can’t have autism, you’re a girl!”  Or “I never would have guessed you have autism.”  Or “I can’t even tell you have autism.”  Or “But you look so normal!”

These sorts of statements are problematic because (from Insider.com):

• The most frequent depiction of autism in media is a white cis-gender white male child or adult. However ANYONE can have autism. Young, white cis-gender boys are just most frequently diagnosed because they were the basis for early autism research.
• Comments about how “normal” I look are really communicating one of two things, neither of which are based in the reality of the autistic experience:
  • “You’re really good at pretending to look neurotypical” or
  • “You don’t fit the pre-conceived notion of what I think autism is based on stereotypes I’ve seen in media.”

“Have you ever done or thought of doing ABA therapy?”

Short answer:  No

Long answer:  No because ABA (Applied Behavior Analysis) therapy is ABUSIVE in the following ways (from SpectrumNews.org):

• It focuses on changing behaviors to make an autistic child appear non-autistic, instead of trying to figure out why an individual is exhibiting a certain behavior.
• It trains children using similar methods used to train rats and dogs (rewards and punishments).
• It teaches children to be ashamed of their autistic behaviors.
• It tells parents that if their child doesn’t do ABA, they have no hope.
• It’s the only type of autism therapy covered by insurance, thereby forcing low-income families to use only ABA.
• Therapists and parents applaud it, but autistic adults who went through ABA as children describe it as abusive

“I was reading some information on the Autism Speaks website…”   Or “I hear researchers are working on a cure for autism.”

Autism Speaks is the largest autism research and advocacy organization in the United States. However, it is extremely problematic for the following reasons (from The Mary Sue):

• They think autism needs a cure. Rather than focusing on raising awareness and advocating for the acceptance of autism in society, Autism Speaks treats it like a disease that needs to be cured or eradicated. This increases the stigma and discrimination against people with autism as it communicates that there is something inherently wrong with them that needs to be fixed. Contrary to what many misinformed individuals think, autism is not considered a disease or a medical condition but rather “a neurotype that exists as a result of natural biological variation.” When autism is properly classified as a natural difference or variation instead of a disease or deficit, it prioritizes acceptance of those with autism rather than efforts to fix them.
• They contribute to the stigma and discrimination surrounding autism. They have produced ads which demonized autism, portrayed it as a destroyer of families and livelihoods and something to be feared.  They’ve released materials that compared autism to leukemia, and encouraged parents to mourn and grieve their child as if they had died after receiving an autism diagnosis.
• They don’t actually have folks with autism in their organization. Autism Speaks, from its inception to its present day, has been mostly comprised of those who are NOT members of the autism community.  Only 1 board member out of 28 has autism.  Additionally, those from the autism community who did gain administrative roles in the company didn’t come away with good things to say about it.  Autism Speaks has also lobbied AGAINST the inclusion of autistic folks on federal boards that make policy decisions ABOUT folks with autism.
• They don’t actually support folks with autism. Very little of their funds go towards supporting people with autism. Only 1-4% of their annual budget goes towards providing family services and their provision of family grants.  Much of their funds go towards research which is focused on a) developing prenatal testing, so autism can be detected in the womb and the pregnancy terminated, and b) furthering controversial Applied Behavior Analysis (ABA) therapy.

“You shouldn’t label yourself.”

A label or diagnosis like autism is a double-edged sword.

1. On the one hand, it brings a ton of clarity and understanding about myself. I finally have a phrase or term I can google!  I can see how a lot of my seemingly disparate experiences all make sense in the context of autism.  I can find community.  It’s such a relief.
2. On the other hand, any diagnosis will be limited by language. There’s no way to encapsulate every single person’s experience in a single diagnosis. Therefore, by its very nature, the label of “autism” will be insufficient to fully describe my experience. It will include symptoms that I don’t have and it will exclude symptoms I do have.

While I agree that labeling others FOR THEM is ineffective, choosing a label FOR MYSELF is incredibly empowering and allows me to understand myself and communicate about my experience to others.

Ultimately, you don’t get to tell me how to label myself.  Only I get to do that.

“But you don’t seem [r-word]”

Never ever use the r-word slur to describe another human. Ever. Not ever. If you want to know why, Google is available.

If what you MEAN to say is that a person lags behind certain developmental milestones for their age, THEN SAY THAT.

“My friend has an autistic child who is nothing like you, so I don’t see how you could be autistic.”

Autism is a spectrum. It’s actually in the name:  Autism Spectrum Disorder. There are as many experiences of autism as there are people who have autism. So if you’ve met one person who has autism, then you’ve met… exactly one person who has autism.  When you compare me to someone else you know (or have seen on TV) who has autism, what you’re really doing is demonstrating the lack of understanding you have about what autism is and can look like.  This is similar to saying “I know what it’s like to survive a hurricane because I’ve run through sprinklers before.”

Additionally, comparing me, an adult, to a child is ALWAYS going to be an unfair comparison because I have been masking my entire life.  If I do not look autistic to you, it’s because I’m performing neurotypicality for your benefit and my safety.

“You can unmask around me.”

Masking it a defense mechanism born out of intense ostracization and judgement. Autistic folks aren’t born masking – we learn to mask in order to survive. We learn to perform neurotypicality in order to be accepted. Autistics who unmask are often hurt professionally, socially, and emotionally because most allistic folks have a very limited (read: stereotypical) understanding of autistic behavior and socialization, and are therefore unable to react to it nonjudgmentally and without assumptions.

As well-meaning as this offer to unmask around you is, most allistic folks have NOT done the work of unpacking and unlearning their own ableism.  Most allistic folks have no idea what beliefs, attitudes, and perspectives they hold that are ableist.  Most allistic folks have no idea what behaviors they do that hurt autistic folks.  If you’re not able to identify those behaviors, in others or in yourself, you are not a safe space for autistic folks, and you are not a safe space for me to unmask around.

Ultimately, you don’t get to decide whether you are safe for me.  I will decide who is safe for me based on exactly one metric:  your behavior.  Well-meaning intentions do not translate to actual safety.

“I have an autistic child, so I know all about autism.”  Or “My friend has an autistic child, so I’ve heard all about autism from my friend.”

Do NOT treat parents of autistic children as experts on autism.  Parents of autistic children are only experts on THEIR EXPERIENCE of being parents of THEIR OWN autistic children, and that doesn’t even necessarily mean they’re experts on how to be EFFECTIVE parents of their own autistic children.

The only experts on autism are AUTISTIC PEOPLE.

“It seems like everyone is autistic these days.  I think it’s just a trend.”

The increase in autistic diagnoses and people talking about autism is the result of increased understanding, research, and social connectedness.  People are not self-diagnosing as autistic because it’s “cool” or “trendy.”   In fact, the University of Washington’s Autism Center states that “In our experience at the University of Washington Autism Center, many professionals are not informed about the variety of ways that autism can appear, and often doubt an autistic person’s accurate self-diagnosis. In contrast, inaccurate self-diagnosis of autism appears to be uncommon. We believe that if you have carefully researched the topic and strongly resonate with the experience of the autistic community, you are probably autistic.”

“You did X the other day/month/year just fine.  Why can’t you do it now?”  Or “I just saw you spend 2 hours chatting with your friends online, why can’t you come hang out with me for an afternoon?”

Allow me to introduce you to the human condition.  We all have vulnerability factors that impact our ability to emotionally regulate, tolerate distress, and function in our daily lives.  Vulnerability factors include things like:

• Health
• Stress
• Self-esteem
• Skills (i.e. preparedness for life’s difficulties)
• Doing things that give us a sense of joy/purpose

Folks with autism also experience additional vulnerabilities related to sensory overload, amount of time spent masking, interactions with others, etc.  On the outside, you may perceive that I look exactly the same as I did last month when I could do X task, and you may have the thought that I should be able to do X task today.  However, you are unaware of the vulnerability factors that are impacting my ability to function as you would like.

Additionally, you may see me do X tasks/activities and assume that I therefore have the energy to do other Y tasks/activities.  However, what you’re not aware of is how much certain tasks/activities cost me to do.  For example, I have a much easier time communicating via text than in person.  I do NOT feel exhausted after going to the gym, whereas I DO feel exhausted after interacting with people in person.  I can spend much more time interacting with autistic folks without getting worn out compared to interacting with allistic folks.

“Vaccines cause autism.”  Or “I heard X causes autism.”  Or “I don’t want to vaccinate my child because I don’t want them to become autistic.”

There have been a variety of proposed causes for autism.  However, There is NO evidence to support autism being caused by refrigerator (cold and distant) mothers or vaccines.  In fact, there is an abundance of evidence DISPROVING that autism is caused by refrigerator mothers or vaccines.

Researchers still don’t know what causes autism, though there is abundant evidence to suggest it is inherited (genetics has been found to explain between 60-90% of whether a child will develop autism).  There are several other factors that have been examined, and there’s still no conclusive answer.  Your friends’ mother’s Facebook post saying autism is called by pregnant people eating sushi is bullshit.

Additionally, if you’re choosing not to vaccinate your child because you’re afraid they’ll develop autism, then:

• You aren’t paying attention to the gross tonnage of evidence disproving that one “researcher’s” original hypothesis that it’s caused by vaccines. The dude did bad science, full stop.
• You’re communicating that you’d rather your child die of polio or smallpox than they have autism. Autism isn’t a death sentence. Stop treating it like death would be preferable. And stop treating parents of autistic children as experts on autism. Do you know who the experts on autism are? ACTUALLY AUTISTIC PEOPLE.
• You’re communicating that the lives of every other child (and adult) in the world is worth LESS than the neurotypicality of your child.

“I would abort if I knew my child was going to be autistic.” Or “I don’t think autistic people have a great quality of life, so it would be kinder to abort them.”

I am ALWAYS going to be pro-abortion. I am NEVER going to be pro-eugenics. If you need this explained to you, Google is available.

Additionally, if you do not have autism, you do not get to decide what the of quality of life is for someone with autism.  This applies to any disability.  If you do not have a given disability, you do not get to decide what the quality of life is for someone with that disability.  You do not get to determine whether their life is worth living.

“You clearly have been able to overcome your autism!” Or “You’re such an inspiration!”

I have not “overcome” my autism. I am still autistic. I don’t overcome my autism in order to lift weights – I lift while being autistic.  I don’t overcome my autism in order to design websites – I design websites while being autistic.  I don’t overcome my autism in order to date people – I date people while being autistic.  My autism doesn’t diminish or go away or become less impactful, no matter what I’m doing.

If I’m succeeding or excelling, I’m not “overcoming” my disability.  Rather, I’m overcoming inaccessibility and apathy created by non-disabled people.

Additionally, no disabled person exists for your inspiration. We’re not here to make you feel better about yourself. We’re not here to inspire you to get off the couch and go pursue your dreams.  Treating us as an inspiration turns us into objects. We cease to be human when you interact with us in this way. And any level of dehumanization or objectification results in FURTHER marginalization which results in FURTHER disability.

“You must have a really [high or low] IQ.”

(from Ted.com and Independent.co.uk)

IQ tests are incredibly flawed in the following ways:

• There is no single agreed-upon definition of intelligence.
• They do not take into account the complex nature of human intelligence.
• They do not take into account environmental differences like access to education, healthcare, and nutrition, all of which impact the brain’s ability to function.
• They are only measures of where a person IS; they cannot measure a person’s potential.

IQ tests are also incredibly harmful because:

• They can be and have been used to create a racial hierarchy and make erroneous claims that certain racial groups are intellectually superior to others.
• They have been used to create policies allowing for the forced sterilization of people with low IQ scores in the United States.
• They have been used to murder children with low IQ scores in Nazi Germany.