The "Autism" Community Is Not The Autistic Community

The "Autism" Community Is Not The Autistic Community

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Red paper origami Robot with a sad face holding a white ripped heart in half on a wooden floor. Text next to it on the right in royal blue that reads:

The so-called "parents" who insist their autistic children are burdens oftentimes lack the empathy, patience, and understanding needed for their children.}

Parents, including anti-vaxxers, martyr parents, and uninformed NT parents try and claim to be part of our community. I notice how people tend to claim to be a part of something that they cannot identify with, and yet that is part of the problem. Hence...

The Era of Autistic Parents vs. Martyr Parents™

Autism Warrior Parents (Martyr moms as well) do not want to change… and cognitive bias, as well as ignorance is a choice.
Autistic Advocacy is not for the faint of heart.
It absolutely hurtsIt really sucks, when parents want to battle autism as if we’re “burdens” to society. People do not understand, specifically why, at times we have a harder time managing our mental illness. I know that it is because environmental stressors and other people (aside from ourselves) do actually cause stress, depression, etc. Parents are so quick to judge us about who we are and make opinions and assumptions, instead of directly asking us. Even when we don’t verbalize language, reach out to these parents when they are asking for help in time, etc., it is never seemingly enough. I feel like lately my advocacy has been taken much for granted. At the same time, I recognize that there have been times where I have been impatient; however, impatience around those that actively choose to be ignorant is why I cannot play this never-ending game anymore of proving who I am to people anymore.

The martyr parents aren't autistic, therefore they are unable to identify with the minority group label. They may have children who are, but it does not mean that they are. The same goes for professionals. They are not the "experts". I’m frustrated and disappointed with people who think that the only way they can raise us is by teaching us to follow their standards of normal behavior. Whatever normal even means these days to me can get quite confusing sometimes. I try and blame myself for what happens in conflicts, still (unintentionally), and even though, there are two sides to every story, I also get the person who is ignorant lecturing me. Parents ruin our self-esteem on the spectrum when they refuse to listen to advocates and then call their autistic children burdens. It is a fact of the matter, a traumatic, painful experience. In my advocacy, I have not been perfect, simply because no one is when they advocate. Instead, I am taught by others that this part of me is some god awful thing and should be fixed and cured. And you know what? It is 2020. I am so done with willfully, intentionally, ignorant parents that complain about their autistic children. If you have a child, of course, that is going to be a hard thing to raise and take care of them. And you (reader) may complain at times, no doubt, as no one is perfect. I’m not referring to the past two sentences. I am talking about parents that complain and publicly humiliate their children on social media, etc. nonstop.

It breaks my heart to see so much hatred towards autistic children. And no, Inspiration porn is not the only issue; rather, I am heartbroken because parents these days would rather abuse, change, fix, and obsess over what is “wrong” with autism, rather than accept what cannot be changed. I am not a burden. Autism is not an easy thing. Nor is being a parent. But to sit there and complain about your child, as if they are the problem due to something they were born with is not helping the situation. Parents, look I get it. I have sympathy. Kids are not easy to raise, and kids are also a pain at times. Instead of publicly putting your own personal views of your child on the Internet for the whole world to see, ask yourself how your child would feel if he/she/they saw what you posted? Even more: let’s say, hypothetically, you were autistic and your parents were talking about you like you’re some tragic case that is meant for empty tissue boxes. How would you feel? It is much easier to complain about others than to listen. Autism is a complex disability and there is no denying this. Now, there is a difference between complaining to a therapist, or one person individually for comfort and support (as well as your spouse). Here are some great options for you to handle the situation instead of going online:
  1. Talk to a therapist
  2. Talk to your closest friends (only a few that are safe)
  3. Talk to your spouse
  4. Talk to an emergency hotline if you are feeling suicidal, or just need help
  5. Talk to a family member that isn’t a child.
But please do not post negative things about your autistic children online. Nor should you constantly complain about your child. This isn't appropriate. We all have our own paths. The Internet isn’t a safe space for information, because technically anything posted online is public. Complaining about your autistic children all of the time only does more harm. We’re not suggesting you do not complain; you’re allowed to be human. The problem is when it is constant and apparent, with the persistent rhetoric of sayings like:
“My autistic child is such a burden!” or
“My autistic child is such a burden to our family.” or
“My autistic child deserves to be cured and not accepted!”
The list could go on. The above lists I made gives you, reader, options to consider. I see even non-willfully ignorant parents who are not anti-vaxxers posting things about their children on the internet without their permission. Ask yourself, reader, if you feel as though you think you have the right. I ask, one more time. How would your child feel if he/she/they read what you wrote? How would you feel if they saw it? How would you feel if someone did this to you? Behavior, according to most philosophers, is a social construct. And yes, behavior IS actually a way to communicate with a person. Autistic behavior is not bad. We understand that *some (not all) autistics can be violent. But instead of understanding why or how that is the case, *some parents take things personally and do not care. Let’s look at a hypothetical situation:
Autistic teenager is playing with a parent. The parent is playing a video game and starts to saracstically tease the autistic teenager. The autistic teenager is a very literal thinker, and the parent pushes the autistic’s buttons. He does not understand the humor because it is not really funny. The parent does not stop, assuming that the child understands the humor, and does not think the child will be affected by how he is manipulating him, and the teen spirals into a meltdown and hits the parent. The parent is then outraged at his son.
Assuming that autistics do not see patterns is redundant. We read patterns, especially toxic behavioral patterns, very easily. The parent does not think that toxic behavior is wrong, and assume that autistics communicate in the same way as everyone else. Behavior IS communication, after all.

Next, we have to discuss the tension right now. There is a lot of tension between autistic moms and martyr parents™ The martyr parents are complaining about their children all of the time, while autistic parents are asking them not to. And it is not about who is right or who is wrong. There is a lot of willful ignorance sitting inside of these parents’ minds, and it will only get worse as time goes on, unless everyone else stands up to the hate with us. I’m not hating these Martyr parents™, but I am concerned for the autistic community because we advocates have been working so very hard just to educate people on why we deserve our own rights in society, just like everyone else. Parents are part of the problem. I’m not suggesting that ALL parents are part of the problem, but parents, as we know it (unless they are autistic), are not autistic. Therefore, they are more privileged in that regard. They do not face the stigma of being autistic every single day. And some even believe in the stigma and abuse their children.

Communication and Interactions: The nonverbal, unmentioned social-cultural expectations from autistics

Autistics and NT's do not interact in the same ways. This does not give room for people to suggest that autistics need to mold who they are to become neurotypical. Teaching them to mask only destroys their mental health. There is a nonverbal understood level of expectations by NTs, but autistics have our own expectations, culture, and socialization. Autistic people are information-based communicators; we prefer information, special interests, and any non-detailed ways of verbal communication. Yet, oftentimes society rejects these valid forms of interactions within our identities, even though therapists promote them. Non-speaking autistics have a need for NTs to adapt to AAC devices, sign language, and other ways of non-verbal/non-speaking forms of communication, such as writing. This is not black and white because autistics all are different. Just because someone may be verbal, it does not necessarily mean that they don't heavily rely on non-verbal communication for needs. Just because someone is non-speaking, it doesn't mean that they are entirely non-speaking. We also expect NTs to understand that we are literal thinkers. The autistic brain and processing occur much differently than the NT brain. This is because everyone else without processing disabilities will not process the information being given at multiple speeds in the same ways. Unlike the NT brain, autistics process information in our environments through different focus points. Hyper-focusing allows us to think quicker through conflicts, resolutions, and it occurs when the environment is very much accommodated. Hypo-focusing may occur when we are unable to use as many "spoons" as we had before something occurs that may deplete the spoons. Spoon theory is one analogy to represent this. Autistics also need our autonomy to be accepted. This means that we don't communicate in the same ways. Below is an organized list and ways to unlearn problematic biases due to ableism:

1. Communication:
  • NTs like to nitpick our language-- yet, they do not process direct language in the same ways neurologically that we do. This is because emotions are experienced by autistics differently-- those of us who are alexithymic love autistic direct language. 
    • Instead of immediately "fixing" language, let go of the need to fix the speech until the autistic consents to doing so. We don't need the prompting to follow your methods of communication. We are allowed to consent to how we communicate. I am allowed to consent to my own body, but you cannot force my body to do something it doesn't know how to. Expecting NT ways of communication from Autistics isn't appropriate. 
  • I am better at non-verbal communication with detail, even though I am verbal. That is one of my challenges.
    • It takes a lot of mental energy for me to communicate nonverbally and verbally.
  • AAC devices should never be taken away ever, and verbal autistics don't deserve people correcting them on language. 
    • Instead, take a step back and ask yourself why they may not have been able to. If you don't know, then ask them when they're calmer.
  • Because communication is energy-draining if I'm exposed to it for too long, I oftentimes need breaks to regulate; however, I cannot always regulate on my own. 
  • Telling an autistic the following social cues without consent can be harmful to the process of self-acceptance:
    • Correcting words in a sentence every single time and demanding it or expecting it.
    • Telling an autistic person specifically to not say things unless it's harmful (ie: a slur or a threat, etc.)
    • Telling an autistic *when* they're allowed to speak and when they aren't allowed to. Basic things that require respect are important, but no autistic person will find communication. 
    • Violating consent when it comes to a conversation.
    • Expecting autistic people to understand the neurotypical way of thinking only and not theirs included.
    • Only using verbal communication to communicate with autistic people.
    • Correcting an autistic person for not talking in detailed language and assuming everyone communicates in the same ways as a neurotypical would. Seeing as though a neurotypical isn't autistic, this is problematic in respect.
    • Berate an autistic person for not being able to address everything in a conflict while they are too fatigued to talk.
    • Berating an autistic for echolalia (repeating themselves)
    • Not understanding nonverbal cues and processing disabilities, as well as other factors when talking to an autistic person.
      • All of these things can be considered boundaries. They should not be violated.
    • Telling an autistic person to not interrupt you.
      • Okay, so this one is important to discuss because anyone, at any given time, may interrupt someone, not just autistic people. But autistic people are not interrupting most of the time to be rude unless there is a conflict because autistic people oftentimes "interrupt" due to processing needs.
2. SPDs (Sensory Processing Disabilities) are complex in nature, but they are often dismissed. Below are examples of how:
  • Reminding an autistic that they should accommodate to a neurotypical environment and not theirs. 
    • The autistic person needs help. It can't just be a neurotypical (NT) expecting the autistic to adjust to the NT. Meeting us in the middle is key!
  • Not listening to their needs.
    • All 5 senses are heightened; therefore, what in their autonomy needs to be respected? Listening instead of fixing is key.
  • Emotional processing and information processing: expecting autistics to just immediately process their emotions in the same ways, or processing what information you're telling them, etc.,
    • The problem with this is that it's the underlying assumption that an autistic person processes their emotions and processes information in the same ways as someone who is Neurotypical. This is false.
  • Not allowing time for processing.
    • Autistics either will hyper or hypo-focus depending, and they need to be accommodated at the moment for them to be able to communicate. Neurotypicals process information at different rates than autistics do. Alexithymia experienced in autistic people is also different than how it would be experienced in Neurotypicals.
3. Consent and masking; why it isn't heard and understood:
  • Assuming that an autistic person has the spoons to keep going in social interaction, conflict, etc.
    • Brain fatigue is very real, even with nonverbal communication. Asking them directly if it was intended or not is better than assuming the person was being rude back in a conflict by not communicating everything needed.
  • Assuming that autistic people can communicate verbally or nonverbally everything in regards to accountability and intent during a conflict resolution.
    • Autonomy matters here; autistic people's silence at the moment does not necessarily mean that they are being cold or dismissing the neurotypical. 
  • Expecting the autistic to agree with every single form of prompting. 
    • Prompting, if used improperly, can be abusive and lead to gaslighting and predictable patterns. Prompting is not even an ABA technique, but ABA therapists often do not understand how to use prompting in ways that can be helpful for the autistic person.
    • Not all abuse is extreme. Microaggressions can also be harmful.
  • Expecting the autistic to follow your ways of socializing and social ability or any of the others above.
    • This can lead to what we call autistic masking. Autistic people grow up with NT parents and NT parents need to put themselves in the learning role. Autistics are the experts of ourselves, not professionals
    • Masking can lead to self-esteem issues, the inability to say no, the lack of confidence for themselves, the inability for self-care, the suicidal thoughts (66 percent are suicidal), burnout, trauma, C-PTSD, depression, anxiety, loss of motivation, loss of self-preservation and peace, loss of sleep, etc.
4. Regulation, Alexithymia, and Empathy, and how it's misunderstood:
  • Assuming the autistic person regulates in the same ways as the Neurotypical.
    • This is largely nonfactual and persistently misunderstood by professionals and parents all of the time.
    • Regulation for autistic people alone is very challenging; therefore, co-regulation must occur as well. A friend, parent, etc. may not be a therapist, but they can still lend a listening ear for support. Listening without criticizing in moments like this is key.
  • Assuming autistic people can identify their emotions in the same ways.
    • Autistic people can become overwhelmed very easily. Them "behaving" on a "good day" is just the masking you're expecting. Or, you're accommodating their environment.
    • Autistic people are hypersensitive to other people's emotions.
    • Just because autistics have been through trauma, not all of them are out to get you. 
    • Autistics have emotional empathy, but also experience hypersensitivity, so that is why they are unable to identify their emotions right away.
  • Assuming autistic people lack empathy.
    • Autistic people and NTs communicate on two different wavelengths. 
    • Autistic people do not lack empathy. If anything, NTs and autistics may not show empathy at times, but it does not mean that they lack it.
    • Damien Milton's Double Empathy conundrum talks about this all of the time, and empathy isn't one-sided with autistic people. 
    • Autistic people experience affective (emotional) through hypersensitivity (which is not directly the same), compassionate empathy, and cognitive empathy directly in the same ways. This is not to say autistic people cannot give cognitive sympathy, but because any autistic person will process information differently, they are unable to directly relate to the ways a neurotypical may socialize. Autistic people can, in my experience give cognitive empathy to neurotypicals if the other person is willing to put themselves in a learning reflexive role. 
5. Autonomy and how it's not accepted:
  • The autistic brain is the same as someone else's brain.
    • Every neuron makes up who I am, so this is false.
    • The amygdala inside of the parietal lobe can be bigger than the typical person's
    • The prefrontal cortex, hippocampus, parietal and frontal lobes are shaped and structured differently, which is why autistic people do not communicate, process, etc. in the same ways as neurotypicals.
  • Autism is affected by the gut/digestion
    • False. The brain and the gut are not directly linked in relation to autism itself.
    • Digestion isn't autism; therefore, they do not correlate. Diet preferences are affected by SPDs.
    • Autism is not an umbrella term for a bunch of comorbidities. It is its own condition.
  • Autism is curable
    • This is false.
    • Autism Speaks is unethically funding a eugenics project, and didn't ask the entire autistic community through research if this is what the #ActuallyAutistic community wanted.
  • Autism is a disease, mental disorder, mental illness. Autism is caused by vaccines.
    • False. Autism, Down Syndrome, Dyscalculia, ADHD, SPDs, etc. (any learning, developmental, or intellectual disability) are considered neurodivergent brains. They are natural and are disabilities. Disability isn't a bad word. Challenges exist for autistic people. These challenges should not be dismissed.
  • Autistic people are unable to be healthy and I couldn't possibly have sex/date/marry any of them.
    • False. Autistic people do and can have relationships with other autistic people, NTs, and allies. 
  • Functioning labels should be a valid way to understand autonomy and autism.
    • False, because psychological associations have retracted them. Plus, the labels were invented by parents, and autism isn't quantitative.
    • Autism isn't "a linear spectrum" 
    • Autism isn't a physical disability
    • An NT does not speak for my community
    • An NT does not speak for those who are non-speaking and speaking.
Neurodiversity involves the acceptance of the autistic person. Parents cannot get PTSD from autism individually itself, and this is a misconception I keep seeing in parents, as well as professionals. The condition itself does not medically cause PTSD. These parents may get PTSD from their parents and pass the abuse onto their children; however, autism itself (the condition) does not cause PTSD. Autistics can become abusive due to the ways in which they were raised, but not because of the disability. Yet, parents will label autism as a "burden", as a "problem" all because they do not reach out to the autistic community for help. Neither do professionals. Autism is misunderstood by parents, and society is to blame for the misinformation. I also know what it's like to grow up with parents who do not accept us, even after advocacy and education. The best thing to do is to embrace the fact that someone's cognition is different, and the way they process things emotionally, not just cognitively, will be different. What is needed is compassion and a listening ear. Neurotypicals tend to dismiss autistic voices, but both autistic people and Neurotypicals need to listen to each other, as autistic people do not lack empathy.

Professionals who do therapy to teach parents that their kid's autism is a burden is not only harmful to the autistic child; but, further perpetuates stereotypes. It is the professional who tends to label themselves the "expert" of a population that they are serving, and this mindset does not help the client. Parents need to put themselves in the learning role around autistic adults when it comes to their children. They need to meet us in the middle, and their child in the middle. We cannot always accommodate NTs. That is not realistic.