An Expose on the "Actually Autistic" Community

Dear Readers,

Before I jump into today's topic, let me make a disclaimer: The struggles of individuals on the spectrum who can mask are real. While some of us can mask and act more neurotypical and thus be treated better overall, it is still hard to find a job, make and keep friends, and even on some days, perform certain tasks. Yes, even those of us who are able to mask and present as more neurotypical, still have days where it is harder to function and complete seemingly simple tasks, such as doing the dishes, laundry, taking the trash out, getting the mail, etc. Yes, our grooming and hygiene may suffer on some days. Yes, it can be stressful for us to have a conversation, especially when the TV is on or the music is really loud. Yes, even those of us who are more neurotypical- passing struggle with a learning disability and have to sometimes fight the school, college, or university to get accommodations so we can pass all our classes. All these struggles do exist and are very real. But something has to be addressed.

It has come to my attention that some people in the "Actually Autistic" community really like to silence those in the Autistic community who are not capable of masking. There is a creator on TikTok, who shall not be named for privacy reasons, who made a video saying that "masking is a privilege." Many either did not watch the video in full or they did not watch all of his videos where he clarifies everything in more detail. Or they did watch the videos but only heard things they wanted to hear in order to prove that he was wrong, somehow. They only heard what they wanted to hear and got really angry and defensive, twisting his words to fit their narrative of what the "actually autistic" community wants to hear.

When he said, "Masking is a privilege", all he meant to say was having the ability to mask in front of others is an ability that not everyone on the spectrum has. Nowhere did he say that situations where masking was a necessity was a privilege, nor did he in any way mean to dismiss the struggles of others. He was trying to get other people on the spectrum to look outside of themselves and accept the challenges of other people besides themselves. He did not want anyone to disrespect those who have greater needs and challenges. There was no ill will towards anyone, and yet some people were so quick to try to "cancel" him and very sensitive, without taking the time to listen to what he was saying.

There was another creator on TikTok, who will not be named for privacy reasons, who was really offended by what he said in his video, and she completely took everything out of context, twisted it, and only heard what fit her own narrative of the Autism community, and how we all struggle with other things. When I tried to explain what he said in the comments of her video, she replied with comments like, "We have struggles too and he needs to respect that." She also insisted that he was dismissing the struggles of those on the Autism spectrum who are able to mask. Someone else also replied, "He's saying that those who are 'more disabled' than us struggle more than we do." Yes, they do struggle more than we do. That is the whole point! We have to look outside ourselves and understand that they need more help. If we want neurotypicals to respect us, we need to respect those in our own community. It is not all about us.

Another comment I read was, "He says something so invalidating about us." But it isn't about us. It is about other people. What is wrong with the conversation being about other people who struggle more than we do? Instead of trying to drown their voices out, we should listen to them. If we want the same grace, respect, and we want our voices to be heard by neurotypicals, we need to stop being so hypocritical and "shush" the other Autistic people when they try to speak out.

Every time I try to explain to the "actually autistic" people, I keep getting the same disheartening reply on TikTok, about how he doesn't understand or respect the struggle of having to mask every day at work. He never said that! His videos explaining it were entirely taken out of context! Instead of hearing him out, many people got defensive and hateful and jump to conclusions. When I told a user that they were just jumping to conclusions, they replied, "You would know that if you had watched all his videos!"

I had watched all of his videos and allowed him to explain fully what he meant about masking being a privilege, because, uh, NEWS FLASH! NOT EVERYONE CAN MASK!! And not everyone thinks exactly like you do. Can it be that I can watch the videos all the way through and come to a completely different conclusion than you? You might be surprised to find out that not everyone will agree with you and they don't have to! We can all watch all the videos and make completely different opinions, because we are two different people!

I must say, that the "Actually Autistic" community is toxic, because there are too many rules and the standards are often too high for other Autistic people to reach. The unspoken rules that, "You can be Autistic, but you still have to be quiet during every meeting. If you need to stim, you have to go into a quiet room where you will not disturb anyone." Also, to be part of many Autism advocacy groups, you have to have only politically correct views about Autism.

While I agree that Autism does not need a cure and do not support Autism Speaks and also agree that ABA therapy is not the best therapy for Autistic people and that there are many alternatives to ABA, I also strongly agree that SOME people on the Autism spectrum cannot mask or go to work in a normal or typical setting, let alone support themselves. "These are children. Of course they cannot support themselves." I wasn't talking about children; I was actually talking about adults on the spectrum who are the most likely to need extra support and who have many high needs. Some examples are adults on the spectrum who keep having sensory overload and meltdowns, injure themselves, and are non-verbal. These individuals who I speak of have so many support needs, that they can only perform smaller tasks, such as getting dressed with or without assistance, or eating prepared foods. Some of them need someone else to prepare food for them. And I know that I will get a lot of backlash for this.

How dare I mention higher support needs in adults on the spectrum? How dare I suggest that some people need more help and have more trouble doing things? How dare I defend those who need me to defend them? I know some people will not believe me. I know this will get a lot of heat and negativity, because some people will not understand, unless they have actually met and worked with the adults on the spectrum who need a lot of support, which is a lot more than you would think. Autism is a whole spectrum. I have met and worked with adults on the spectrum who may also have Down Syndrome or Cerebral Palsy or who have other cognitive delays. If you haven't met or worked with these individuals, then please do not try to speak for them. You cannot speak for the whole Autism community, just because you are Autistic.

While we discuss this further, masking is an ability that only some of us on the Autism Spectrum have. It is a privilege, because we CAN do it. The circumstances under which we have to mask are NOT the privilege; the ability to do so IS. But that went right over so many people's heads. They missed the whole point he was trying to make. That is truly disheartening and disappointing.

Why are some Autistic people so angry at someone for being more stereotypically Autistic and not be able to mask as well as those of us who can? Is not the whole point of the Autistic community to spread awareness and acceptance? Why is it called a SPECTRUM? Why can't we all accept everyone across the WHOLE entire spectrum? I thought that was the point. I thought the point of Autism Acceptance was to include ALL people on the spectrum and listening to all Autistic people's experiences, not just our own. We constantly demand that neurotypicals listen to actually Autistic people's experiences, so why are we not listening to those in our very own community? Apparently, the point is to only accept individuals on the Autism spectrum who can still mask, hold down a job, be more independent, and hold a conversation and understand jokes. The point of the "actually autistic" movement is to only accept those who are neurotypical passing, apparently.

It is very discouraging to keep finding out that those in the "actually autistic" community like to silence others if they do not fit their narrative or description of what Autism should look like. Instead of hearing him out when he was explaining that not everyone can mask, thus making their lives more difficult, so many people only heard, "I don't respect your struggles. Your struggles are not that bad. Get over it." They like to only hear what they want to hear, instead of calmly listen fully to everything he has to say about masking.

Masking is the ability to hide Autistic traits that are often perceived as annoying, rude, disruptive, or too repetitive. Having this ability and skill is a privilege, because this makes it easier for those of us with this amazing ability that we take for granted to find jobs, be successful in the workplace, be successful in school, and make and keep friends. Masking makes life so much easier, because we are not always being told to stop stimming or getting constantly told to stop making noise, quite as much as those of us who cannot help it and have to do it all the time.

Some of us on the spectrum have to stim all the time, making many people uncomfortable to be around those of us who cannot perform masking. Some people have not spent any time with those on the spectrum who need more support and need stim more, and it really shows. If you have spent any time with those of us on the spectrum who are unable to hide their Autism and mask on the regular, you would understand what the guy who posted that video is talking about!

I swear, some people hear, "Masking is a privilege." and all they hear thereafter is that he does not care about or respect the struggles of people who can still pretend to be "normal". Some people hear the first part of the video and get angry after the first part and then completely miss the point. But maybe that's just part of their Autism, because some of us struggle to understand the entire message.

I have personally worked with children and young adults on the Autism spectrum who literally cannot mask in public. I am talking about those who stimm constantly. No, it is not always happy hand flapping, spinning, or happy twisting around. Some of the individuals I have worked with really do engage in self-injurious behaviors. Some of them still need assistance with very simple everyday tasks and some still need help with toileting. I am talking about those with an intellectual disability as well as Autism. These individuals need more therapy, and intervention may continue for the rest of their lives!

I believe the reason why the "actually autistic" community get so defensive and angry when others like the young man on TikTok and I try to explain this, is because they automatically assume that this is somehow an attack on the Autism community, as if we are actually trying to dismiss the true struggles of the individuals who can still mask.

I also believe this is because of cognitive dissonance, a part of Autism which makes it harder to get outside of one's own way of thinking about things. I also have observed that a lot of neurotypical- passing Autistic people have not spent enough time around those who cannot pass as neurotypical. They have the idea that eventually, Autistic people will all rise to the top of the social ladder and be able to fully contribute to society, as much as humanly possible. Let me explain to you all why this is actually so problematic.

For several years, I have worked at a summer day camp program for children, youth, and young adults on the Autism spectrum, all across the entire spectrum, ranging from what many call "high functioning" to "low functioning." I have worked with, as I have stated previously, some who cannot mask in public. Some can only communicate via special communication devices, such as augmentative and alternative communication devices, (AAC), for example. Some of the individuals I have worked with did not use the devices very much while others used them more.

When working with an individual who does not use many of the communication tools offered to them, one must consider that there is something else going on. Maybe they are too overwhelmed or overstimulated to use the device. Others just may not want to communicate that way in particular. In that case, sign language or watching body language is a great way to communicate and understand how the child or adult is trying to communicate. Stimming and meltdowns are also forms of communication, because sometimes, they may not know how else to communicate.

The individuals I, as an Autistic person myself, have personally had to try to see what was going on that caused a child to have a meltdown. I have also had to figure out what the child wanted or needed. And if said child does not want to use a communication device, trying to figure out how they communicate takes time, because one has to observe the behavior. Sometimes, the behavior IS the communication.

While I could go into very much detail about what I have had to do while working with these Autistic individuals, I want to get back to the point earlier and why it is so damaging to the whole Autism community to silence those who have a harder time masking or cannot mask at all and why it is so damaging to silence those who are just trying to spread more awareness about different kinds of Autism across the spectrum.

"Just because some Autistic people have worse struggles than we do, does not mean ours are not valid!" I hear voices screaming in my mind. This is in no way meant to invalidate you or me; we are only trying to spread more awareness about more disadvantaged individuals on the spectrum.

When we say that masking is a privilege, what we mean is that the ability to do so is something we take for granted. We are not saying that having to mask in public is a privilege, but that the ability to mask when others cannot, is. Being able to mask means being treated better by the general public, because we are able to do the performance that everyone else expects of us. Just like a good opera singer, we are able to please the crowd by doing a performance that helps us to get along better with others and helps us to be successful in the real world. Being able to mask when others are observing us is something that some Autistic people cannot do very well or at all, and some are not aware that others are watching as much as we are.

Making means being able to do a job without any "disruptive" behaviors and learning the "correct" way taught to us as early as preschool. Masking means passing job interviews with flying colors, getting accepted into more colleges and social circles, and making and keeping friends. The better one can mask, the more successful he or she will be in life, because they will be considered easier to "deal with".

To the neurotypicals in our lives, making means no behaviors that seem "disruptive", "repetitive", or "too distracting". To them, masking means more employable, more well behaved, and someone who can do their job without interruptions. Having to mask in public is not a privilege; being able to when others are watching, is. Please understand that! Not everyone on the Autism spectrum can mask.

When those in the "actually autistic" community on TikTok and other platforms continue to silence those who are more stereotypically Autistic or who try to point that out, it is very damaging to the Autism community as a whole. If we want more acceptance and respect, then we have to stop silencing the voices in our own community! We have to stop dividing the people in our own community and allow others to express themselves without being interrupted or someone saying, "I'm going to have to stop you right there! That is so disrespectful to us Autistics. As an Autistic person myself, that is being very dismissive of my everyday struggles."

There is a local Autism advocacy group that I left a few years ago, because they have the same problem of not accepting everyone on the spectrum. Let me rephrase that. They will accept everyone on the spectrum until they show behaviors that are less "favorable", such as stimming, making unexpected loud noises, being blunt and honest, and other traits of Autism that they think should only be part of being a child with Autism, not seeing the whole picture. This group made of adults on the spectrum also has the problem of being very harsh to those who still may not understand jokes, social cues, or understand when it is their turn to talk or personal space. Because they are adults, they are expected to already know these rules.

The president and VP of this group has treated several ex members very harshly and punished them and told them that if they "ever do that again, they can not come back!" Several ex members of this group have left their group to join my Autism group because I am more accepting and understanding. I have more compassion, having been around those who have greater struggles. I want to keep the name of my group, as well as the name of the previous Autism group, and the names of the members and ex members and the new members of my group private on here for privacy reasons.

Yes, we are all aware of your struggles! But not everything is about you. Everyone has different struggles. No one is saying that your struggles are not real. No one is invalidating your struggles or your experiences. For heaven's sakes! Let everyone in the Autism community freely express themselves and talk about what they have personally observed. Let Autistics be Autistics!

If we are fighting for equality and Autism acceptance, then we as a community have to do better to let ALL Autistic voices be heard, not just our own! We have to stop fearing that when someone in our very community is trying to explain the struggles he or she faces or that he or she has personally observed, that somehow, he or she must be invalidating our own struggles. We are not even talking about your struggles; we are talking bout what we know from personal experience. So how on earth is that, in any way, sahape, or form, invalidating your experiences, when we were not even talking about you, in the first place? I swear, some people really need to "take a chill pill", as it were.

If we really want to fight stigma of Autism, then we have to include those of us who are more stereotypically Autistic in the discussion about Autism. We have to allow everyone in the Autism community to spread awareness. Spreading awareness about the struggle of not being able to mask in public or the urge to self- injure and having more meltdowns in public is NOT us trying to invalidate the very real struggles that everyone else on the spectrum faces.

Allow me to make this analogy. A black person tries to explain the discrimination he or she faces because of the darker color of his or her skin. Then, a white person interrupts and says, "I struggle too. You need to respect that." The black person was talking about the challenges that come with being black; the conversation had nothing to do with the challenges the white person faces. While the white person may struggle with certain things, it is not because he or she is white. The black person faces more discrimination because he or she cannot pass as white. This makes it harder to find a job. This also goes for those with darker skin telling those with lighter skin the same thing.

The same idea applies to people on the Autism spectrum who physically cannot mask. Some people's Autism is more visible. We have to respect that. In case it is not clear, bringing more awareness and acceptance to those on the spectrum with higher support needs is not in any way, shape, or form dismissive of the real struggles of those on the spectrum who can still find jobs. We just need to look outside of ourselves and do research.

As I have stated before, I actually worked with not only children, but also teenagers and adults on the Autism spectrum with much greater needs than other people I know, who are more likely to be placed in group homes because of their challenges, because their caregivers get burnt out and are at their wit's end and do not know what else do do, anymore. I am talking about issues such as self-injurious behavior, where an individual is only one head-bang away from an injury. I am talking about those with a much lower threshold for stress. Yes, I am talking about full grown adults, not just children! They do exist! It is very likely that they have another condition along with Autism. Some are not just Autistic, but also intellectually challenged.

And some adults on the spectrum may not be intellectually challenged, but still have a hard time masking. THYE PHYSICALLY CANNOT CONTROL IT! Even though they may seem "high functioning", they still have some support needs like being able to stim, vocalize, yell, or scream sometimes, even when it seems inappropriate. The solution is not to yell at them for getting excited or nervous and being extra loud or not understanding the joke; the solution is to gently help them find coping skills and never getting impatient with them, no matter how many times they stress you out. As an Autistic person, you should know that.

AUTISM IS A SPECTRUM AND EVEN ADULTS ON THE SPECTRUM CAN STILL HAVE CHALLENGES THAT THEY HAD AS CHILDREN. BECAUSE IT IS A SPECTRUM, THE BEHAVIORS VARY FROM PERSON TO PERSON. AUTISTIC PEOPLE DESERVE DIGNITY AND RESPECT!

The point of the "Actually Autistic" community and movement was to spread acceptance, but it seems as though it only encomapsses those of who had many challenges and were also non-verbal as children but who have overcome many of those challenges, rather than embracing and accepting everyone in the entire Autism Community. I believe we need to improve the Autism Acceptance movement and allow those of us with higher support needs to explain their own point of view, instead of forcing everyone have a politically correct stance on Autism. We all need to acknowledge that others on the spectrum need more support and welcome different views on Autism and not just the ones that are more accepted.

The more accepted stances on Autism are that we were all non-verbal children with cognitive delays who all grew up and are all pretty much on the same page as adults. I will explain why this view on Autism is flawed in the next article, because I need to write another article on this subject so I can discuss it at greater length.

In conclusion, there are some flaws in the Autism Acceptance movement and the "Actually Autistic" movement and all different perspectives and stances on Autism should be accepted. We need to normalize not masking and embrace the diversity in the Autism community. The "Actually Autistic" community is not really a community, but a movement, which I will later explain in another article. It does not encompass the Autism community as a whole and a lot of Autistic people are left out because they cannot pass as more neurotypical as some of us can. Finally, as an Autistic person, I have met and worked with children and adults of all ages with all sorts of needs because of their Autism and other conditions. I know what it means to be on the spectrum.