Editor’s note: This article was originally published in Spanish in NCH-Autistic Claim. It has been translated and transcribed with the author’s permission. She remains anonymous due to the fact that she is a minor.
=======================================
Part 1 of this article belongs to a 16-year-old autistic girl. I have asked her permission to share it with you because I think it is very important that you read it to begin to understand autistic characteristics usually considered “deficient” and “abnormal” from a completely new perspective, a voice that needs to be heard by society. Part 2 contains my reflections and insights.
Part 1: Surviving COVID-19 like an Autistic
How should we prepare ourselves to overcome the psychological impact of the state of emergency?
In these moments of crisis, the world is no longer adapted to you, the neurotypicals. So tell me… How do you feel? Is it comfortable? No?
Well, that is what we autistic people live daily since we are born. Right now, our one major difference is that we are compelled to adapt to this world made for you without taking our own well-being into consideration.
Now, although we can’t say that the roles have been reversed, you are going through something that we typically experience and eventually learn to deal with. And since we (or at least I) are not as mean as you are, I am going to explain 4 tools that we autistic people use to manage our daily lives. Usually, these tools are very negatively perceived by you. You can use these tips to make the most of this situation with at least half of your mental health in tact:
Stim.
Dancing, flapping, shaking, rolling, babbling, singing, and many other activities can be stimulating. The only thing that matters is that you move and you like it. Staying in bed is not an option as you will eventually become depressed, not only mentally, but also physically.
Isolate yourself.
- Make a schedule for the news, social networks, and people, both inside and outside your home. This is a situation where your energy bar will always be at halfway, and I know it is very hard for you not to “listen” or “support” the people around you who are feeling bad.
- But understand this: you must be in battery-saving mode, or you will feel bad, too. Instead of helping, you will only make it worse when you eventually have to impose boundaries.
- And to parents: do not impose no cell phone rules at the table, especially if your rules are only because meals are a space for socialization. You will be socializing all day with your family, anyway. Do not add more stress for the sake of tradition.
Have a routine.
- Have a routine, or so-called inflexible thinking. Doing something in the same place, at the same time, and for the same amount of time speeds up the task and reduces the need to process new stimuli.
- That’s why we autistic people close ourselves off to routine, and that is just what you should do during this quarantine with all those tasks that burden you. It will make them quicker and more comfortable to do.
Hyper-focus.
- I know those words sound strange… but it’s actually very simple. Do things you like and focus on them. Intensely. Have you finished work? Done socializing and watching the news? Have you stimmed until getting tired? Then why don’t you read that book you “never have time for”? Or start a new hobby?
- Any activity that you like will be useful for this, you just have to do it with real passion as if your life depended on it. That will help to kill all the dead hours, and before you know it… the quarantine will be over.
And as they say in the autistic community, #StayHealthy. That means putting your mental and physical health as your number one priority. And believe me, you’ll need to be in good health to fix all the other problems this quarantine brings with it.
Part 2: What Non-Autistics have Lost in Quarantine
This quarantine represents, at the very least, a situation where neurotypicals all over the world have lost a set of privileges they always took for granted. Some characteristics of society that prioritized the needs of neurotypical neurology have disappeared:
- The freedom to socialize in the way they socialize.
- The freedom to come into physical contact at all times they need to.
- The sources of stimulation that neurotypicals use to regulate themselves sensorially and physically: sporting events, parties, shopping, weekend outings, concerts– in short, basically, all kinds of entertainment and retail therapy.
- The access to work, and with it, the certainty of knowing that you will bring food home.
- Access to an education adapted to your needs and those of your children, and with it, the right to dream of a future.
- Access to mental health which means having a certain minimum number of avenues for self-help.
- Access to physical health (the difficulties of autistic people to be heard about their ailments deny us access to this right more often than you can imagine).
- The freedom to walk away from the things and people that are overwhelming you, to have your own space.
In short, the freedom to attend to the needs of your body and mind.
All this puts neurotypicals in a situation much closer to the one we autistic people live every day, for years on end. Can you imagine what your life would be like if this quarantine lasted forever? Can you imagine living your life repressing yourself from doing what you need to do to be well?
Imagine that the world is not adapted to your characteristics and needs puts you in a situation of psychological vulnerability that makes the maintenance of your mental health a priority. And it makes those autistic characteristics that are so often pathologized indispensable assets.
Check the indications of the “mental health experts” for quarantine and analyze if it is not exactly what we autistic people do. As one mother commented in the original Spanish article: Why is it wrong if autistic people do it, but it is “the right thing to do” if you are a quarantined neurotypical?
It is time to rethink autism, and this is a UNIQUE opportunity to do so. Today, thanks to COVID-19, a lot of people have the chance to put themselves in our shoes. Let’s encourage them to do so, let’s invite them to reflect:
Autistic behavior is neither “deficient” nor “abnormal.” It is the useful, normal, and appropriate response of human beings living in our circumstances.
- Neurotypical People Are Not Trash - April 10, 2021
- When Parents Say “I HATE AUTISM” Their Words Affect Autistic Lives - June 3, 2020
- For Non-Autistics: How to Survive COVID19 in a World Not Made for Your Neurology - April 21, 2020
7 Responses
I love part one. But I can not agree with part two.
And I am not sure if it is because most of those things apply to me, or if it seems too generalized or in other words they ignore one of the most important points around advocacy:
“If you’ve met one person with Autism, you’ve met one person with Autism.”
Everyone is different! Since the Autism spectrum is so diverse, you can’t say that everyone autistic does or does not has lost access to those things.
The freedom to socialize in the way they socialize. –> COVID has impacted me more severe than most allistic/NT people in my family/friend circles. (I had a carefully curated routine of social interactions. I have lost access to my safe spaces. (Queer meetups. Neurodiverse Meetups. And meeting up with friend that don’t require me to mask around them…) My NT family members, my NT friends living in sharehouse,… they are living with other NT people… they can interact with them in a way that fits their brain wireing… Meanwhile I am living with only allistic folks… and while they are usually great it’s a struggle…
The freedom to come into physical contact at all times they need to. –> I need physical contact.
Ever since I can think back, I have shown my physical affection for people I cared and felt comfortable around. When I show my affection, hugging is sort of my go-to action. This doesn’t mean that I only hug. Sometimes it is difficult for me to communicate that I want a hug. When I hug someone I feel comfortable/connected/trust/like it makes me feel good. The feeling is hard to explain… but I love it…
The downsides to this is that physical contact is suuuuper bad if I don’t feel any connection… That I am very selective about the people I feel comfortable with physical touch… (back to the issue around “freedom to socialise”)
The sources of stimulation that neurotypicals use to regulate themselves sensorially and physically: sporting events, parties, shopping, weekend outings, concerts– in short, basically, all kinds of entertainment and retail therapy. –> Again something that is also true for many autistics I know. No matter if it is one of my friends who spends every Friday night at the local game-store for Magic Tournaments. My friend with a special interest in music who cant go to concerts. My “party” friends with whom I loooove to go to the one accessible/inclusive event that happens once a month.
The access to work, and with it, the certainty of knowing that you will bring food home. –> More than 3/4 of my autistic friends are employed. Regularly and full time. Many of them had to stop working due to COVID. This seems like a cynical statement to me. Especially knowing how much harder it’s probably gonna be for us to get back into work after this is over.
Access to an education adapted to your needs and those of your children, and with it, the right to dream of a future. –> I am part time studying (my special interest) and this whole situation has quite negatively impacted how I am able to access my usual support services.
Access to mental health which means having a certain minimum number of avenues for self-help. –> Yes those things have been lacking before, but now there is even less access.
Access to physical health (the difficulties of autistic people to be heard about their ailments deny us access to this right more often than you can imagine). –> Physical health for me constitutes access to a weights and regular visits to my Physio. Currently I have neither and I am struggling with my chronic pain. My lack of proprioception make it almost impossible to have a Physio session without anybody actually moving my body to show me movement patterns.
The freedom to walk away from the things and people that are overwhelming you, to have your own space. –> Right now stuck inside with no avenue to “escape” and everyone working from home it actually feels harder to walk away. To have space for myself.
I think the purpose of the article is not well understood
nowhere does it say that we autistic people don’t have a bad time with quarantine… the article says that quarantine gives nts the opportunity to understand that what they call pathological behaviors are actually ADJUSTMENT tools…
they need to look at these 4 typically autistic behaviors, which are even part of the behaviors analyzed in the diagnosis… as the tools of any human being who is in a mentally difficult situation
Translated with http://www.DeepL.com/Translator (free version)
NeuroQueer said: “If you’ve met [an autistic person], you’ve met one [autistic person].”
Yes, it’s true that autism is a highly heterogeneous neurodivergence, and we are therefore all very different to each other, but that doesn’t mean that the discrimination we endure is just as heterogeneous. Now, with that knowledge in mind, go back and read part two of the blog post again, more carefully this time.
While non-autistics freak out over the pandemic and engage in destructive behavior (like planning to go out when it’s unsafe), I’m completely okay. Because these limitations aren’t really new to me.
So yeah, it’s “welcome to my life.” This setup isn’t particularly different from my everyday life.
Neurotypicals could try being a little more autistic. Delve into your interests. Follow a routine. Accept the fact that you have a limited life right now and sometimes you have to make sacrifices for your own well-being.
Except you’re also protecting others’ well-being. And you, unlike me, can go back to a world that’s accessible, and in which you can navigate without needing to depend on others’ kindness.
I hope that maybe non-autistics can learn from this and better understand what it’s like to be autistic and disabled. And also remember that by not going out when it’s unsafe, you are protecting other people.
(And I know that this setup isn’t easy for all autistics; it’s just that way for me because it’s so much like my ordinary life already.)
That’s exactly what it’s about… that people have the opportunity to discover that the autistic behaviors they use to diagnose us and are understood as maladaptive are tools for people whose configuration is not taken into account…
it is an article of the type: welcome to my life, how does it feel, do you still find my behaviors and tools so terrible when you are the one who needs them? if autistic tools are so terrible, why are psychologists recommending them for nts in quarantine?
Translated with http://www.DeepL.com/Translator (free version)
I’m sorry but, this is the most smug, unhelpful, condescending, posts ever. Are you really trying to help neurotypical who are actually struggling during quarantine, or you just trying bash them for having different needs. If this is a joke it isn’t funny. My sister is actually very suicidal and my aunt lost her business, but let’s just chastise them because they are neurotypical and they can’t possibly suffer. Only NDs suffer ever in life. This is such a very insensitive post.
Thank you, Rilah. I am going to add a reference to your comment to my research paper on how it’s not autistic people who lack empathy and theory of mind in comparison to allistic people, but rather the other way around. Thanks for the excellent evidence.