Musings of an autistic college student
Author: Courtney
Finally: a short post!
If you’ve been reading this blog for a while, you’ll notice that the website has been a little bit redesigned. I’m hoping this design might be a bit more accessible, but I’m still working out a few issues.
If you have any suggestions or accessibility concerns, please let me know!
The other day, someone said to me “it’s so inspiring that you’re overcoming your autism!”
Not surprisingly, I hear this one a lot.
“Overcoming” autism.
“Despite” the autism.
“Fighting” autism.
“Don’t forget; you’re a person with autism.”
It’s something that always throws me off, really. It’s as if autism is supposed to be a roommate – you know, the one who eats all your Goldfish crackers and leaves the fridge door open. Or the cat in your home that won’t stop stealing your toaster strudel (thanks, Leia).
When someone says this, they usually think they’re complimenting me or giving praise – which I understand and appreciate. I can’t deny that it’s hard sometimes to do things.
But – let me make one thing clear.
I’m not “overcoming” autism.
I’m not anything “despite” the autism.
I’m not “fighting” autism.
I am autistic.
I don’t need to overcome autism, because autism itself isn’t something to overcome. Allow me to explain.
This June, I attended the Autism Campus Inclusion program that was led by the Autistic Self-Advocacy Network.
I spent an entire week immersed in autistic space, and it was life-changing. I was in a room surrounded by only autistic people across the spectrum. I saw no tragedies – only wonderful friends who embraced and loved being autistic.
In turn, I remembered that I love being autistic too.
You see, autism isn’t a roommate.
Sure, autism is also meltdowns. It’s sensory overload, migraines, occasionally insomnia. Autism is the sometimes reaching milestones later than you’d like to admit.
But no matter your neurology, life presents itself with challenges. Autism is the same.
Autism, like life, also presents with joys and gifts – and not necessarily in a savant way.
Autism is the intertwined web that connects me with a beautiful and loving community – people who are like me. It’s special interests, passions, and getting lost in your own senses. It’s non-compliance, non-conformity, celebrating different!
Autism isn’t some otherworldly entity; it’s how I’m wired. I’m neurodivergent – my brain is a bit different from the status quo. I’m not broken, not less. I’m just me!
Before I learned I was autistic, my mental health and depression was at its absolute lowest point. I knew I was “weird” and couldn’t do things everyone else could do, but I (and others) attributed it to laziness – contributing to a vicious depressive cycle.
Learning I was autistic was not a tragic moment; it was liberating. It was also a process, slowly emerging with more determination and acceptance for myself. I’m still in that process, but I treasure this part of me – the reason I am myself.
When I embraced the fact that I’m autistic, things started looking up.
I stopped thinking of myself as a burden.
I became less suicidal, a little less depressive.
I accepted that I am just me, and that’s okay.
I had a name for my difference, a community to belong in.
I tried “fighting” autism all the time as a child. I tried to do things “despite” the autism. I tried “overcoming” the autism. I didn’t have the word for it, but I hated this odd part of my personality and brain who couldn’t seem to grasp things that everyone else could. I thought I was just bad at life – because everyone around me said so.
When I’m learning to stop fighting myself, that’s where the healing begins.
You can’t compare yourself to other people’s progress, especially when you’re autistic. And if your kid is autistic, you can’t compare their progress to others.
We develop in our own pace, in our own way. Remember, I’m not able to live alone, drive, or do a lot of other things that most college kids do. I can barely even cook unless I have someone who is walking me through it and there with me. Maybe one day, I’ll get there.
I stopped thinking, “I wish I was able to be as self-sufficient as them.”
When I accepted the fact that autism is just how my brain is wired, I asked myself a different question.
“What can I already do? And what things am I able to learn right now?”
And that’s the key: autism isn’t a tragedy – it’s a difference. It’s okay if I don’t have a life that is identical to my peers. That’s not my path; I make my own, just as everyone else does.
My existence isn’t a tragedy. I’m learning that I’m not a burden, as I felt for so many years. I love this part of me. While the world is not quite accessible for me yet, I am learning that loving myself (including autism) is a radical and rebellious act.
Autism is just one of the many components of me, and why should I fight a part of myself? Why put myself under pressure just to conform to neurotypical standards?
I’d much rather just be me – my authentic, autistic self.
This past Saturday, I was given the opportunity to speak at the Autism Society of East Tennessee’s Autism Educational Conference.
I felt a bit out of place (most of the people there were neurotypical), but that’s okay. My topic that I presented on was the management and prevention of meltdowns, as well as how to better support healthy emotional regulation. Considering how many meltdowns I had preparing for this session, the irony has not been lost on me.
Since I know a lot of people are unable to afford attending the conferences, I figured it would be helpful to post the information on here. I want to make sure the information is as accessible as possible.
Meltdowns are easily one of the most difficult parts of being autistic.
I love being autistic (something a lot of people don’t hear often!), but meltdowns are honestly the worst.
The best way I can personally describe a meltdown is like a Blue Screen of Death crash on a computer. Of course, I am a human being and not a computer – but I think it gets the point across. Others have also compared it to a more intense and painful panic attack.
A question I have often been asked by parents and caregivers is “how do I tell the difference between a meltdown and a tantrum?”
For someone raising a toddler, that’s a fairly valid question. Neurotypical or autistic, children are going to throw tantrums sometimes. Adults do, too. It happens. For this, keep four questions in mind:
In most cases, meltdowns are not goal driven. A meltdown does not occur because the kid wants the chocolate bar in the checkout lane – unless they expected to get it prior or it was promised. And if they do, that may be a sign that something else is going on. I’ll go more into depth with that later. Meltdowns also can occur with or without an audience, because it’s not seeking a goal- it’s a sign of distress.
When a child has a tantrum, ignoring them or giving in are ways that people deal with it. You can bribe or reason with them, whereas someone facing a meltdown has way too much input going in already. They will struggle to process more of the information. Another way to tell is to analyze the situations that led up to the event. Were you in a crowded supermarket and the intercom came on? Did your child get a bad grade on an assignment? Were they bullied on the playground that day? A lot of different factors come into play with a meltdown.
The same applies for teens and adults who are autistic as well. There may be different situations from homework or playgrounds, such as relationship problems or stress. It’s important to remember meltdowns happen at all ages. It’s not just a “kid” thing. It’s an in-built response to distress.
Meltdowns can be presented in different ways. Some autistic people have more outward meltdowns, which may look like throwing things, hitting ourselves, biting others, etc. I’ve had my share of ducking to avoid objects being thrown, but always remember that it’s not necessarily personal. The individual needs you to be calm, not angry. Individuals may also “lose their words” or become nonspeaking during this time, which is important to note.
For myself personally, I am much more inward with my meltdowns. I tend to exhibit self-injurious behavior such as scratching my skin and other things. Of course, prior to my diagnosis, my providers thought this was simply just self-harm – not a product of meltdowns. After learning I was autistic, I was able to implement things that have helped bring the self-injurious behaviors to a much less severe state. I also tend to cry, rock, or have my head buried in my hands. I remember being very young and telling myself to “hold on” until I was alone. Of course, holding back meltdowns will also make them worse. Typical, really. The more you try to fight the meltdown/ push through, the worse it tends to be. Some autistic people are able to do this, while others are not – and that’s okay. We’re all different! Sometimes though, it’s impossible to do that at all. I have found that trying to hold back a meltdown is also very unhealthy and detrimental to your mental health.
Meltdowns can be very complex. Sometimes it isn’t necessarily just one factor but a mixture of several. For example, a child who has a meltdown over choosing a marker may not be having the meltdown over just the marker itself. She may have already had a stressful day, might be sick, or even just already overstimulated. While the marker situation alone could trigger a meltdown, many times it’s the “final straw.”
Meltdowns can be caused by:
I’ve had meltdowns that were triggered by each of these things. It’s important to note that it could also be more than one thing. For example, I had a very particularly awful meltdown my freshman year of college. While I thought it was just because of emotions and sensory issues, it turned out that I also had pneumonia and hadn’t even noticed. I wasn’t even able to communicate that I was sick – I just felt “off” and didn’t know how to describe it. It wasn’t until I went to the doctor that they figured it out.
On a side note, there is also something related called ‘shutdowns.’ When this happens, the individual may be unable to cope with their surroundings and has to “check out.” This can present in derealization/dissociation, becoming unable to speak or move, and feeling so drained that you can’t function. I have these far more than I have meltdowns, and they’re just as difficult to deal with.
First, remember to keep calm. Your goal is to de-escalate and support the person – not agitate and stress them out further. It’s also better for your own coping skills to remain calm in crisis when possible. When I’m in the middle of a meltdown, the absolute last thing that will help me is someone yelling at me.
Another important thing to note is the necessity of self-care. Your mental health is important, just as the individual’s is. Take some time to decompress and relax later – and make sure that the autistic person does too! Meltdowns aren’t fun for anyone, especially the person having them. After a meltdown, I feel incredibly drained and unwell. It takes time to recover from such an emotional and distressing experience. Just as you’d unwind with a nice book or a glass of wine after a rough day at work, the same principle applies.
Make sure that you consider all the different aspects and causes. If it isn’t emotional or sensory, keep in mind that there may very well be a medical issue going on. This is especially true if the individual isn’t able to tell if they’re unwell or if they don’t have access to effective communication tools to describe the problem.
I personally love the H.U.R.T.S. method for narrowing down the medical issue. I learned this particular concept from Clarissa Kripke, MD, FAAFP. I provided a link to the bottom of this page if you want to read a much better worded and in-depth document.
Almost everyone involved in this field has heard the old adage “behavior is communication.” Technically, this is very true. However, keep in mind that sometimes the ‘behaviors’ are reactions that are completely involuntary. React kindly and keep this in mind.
Now for the big issue: what’s the best thing to do when someone has a meltdown?
For this one, I recommend the S.C.A.R.E.D. Method. From what I’ve read, this is attributed to an autistic first responder named Deborah Lipsky.
Everyone has had one of those bad days, right? Where everything is so stressful that you just have to cry it out?
Similar to a meltdown, you have to have positive coping skills. Things such as stimming, a favorite fidget, coloring, mindfulness, and other activities can be helpful. If you’re going into a more stressful or new situation, make sure the person knows what to expect – whether you use social stories or even Google Maps. Using AAC can also be beneficial if someone is nearing a meltdown or recovering from it. Speaking and communicating can be very difficult during meltdowns.
Other ideas include helping the autistic person adapt to a difficult situation. For example, if you have to go grocery shopping (something I despise), ear defenders or headphones and sunglasses might be a good middle ground. If people are judgmental about it – too bad for them. Your kid (or yourself, if you’re an autistic teen/adult) deserves only good people in their life, and humans that are cruel or not understanding do not deserve the time of day. Sensory aspects are incredibly important to keep in mind for preventing meltdowns. Weighted wraps, fidgets, pressure vests, anything to help with self-regulation.
Also: always presume competence. Even if a child is completely nonverbal, I’m quite confident that they’re taking in everything. I know someone who did not get the opportunity to use appropriate AAC until they were much older. And when they did – they had a LOT of stories to tell about caregivers and teachers that didn’t presume competence at all. Everyone should have access to communication, in whatever method is most comfortable and natural for them. You’ll find that a lot of meltdowns (especially in younger kids) are often related to difficulty expressing their thoughts and emotions.
Autistic people often have difficulties in emotional regulation, whether that be identifying, describing, understanding, separating, or showing emotions. This presents in different ways. It’s also important to note that autistic people are at higher risk for mental illness – especially anxiety, PTSD, and depression. This is often due to a lack of appropriate and quality supports, the denial of autonomy or self-determination, and many other factors.
Related to the subject of emotions, many autistic people are not lacking empathy – a very common misconception. Myself, I am hyper empathetic to the point where I can’t watch something too dramatic without having an emotional reaction that may be deemed as exaggerated or at inappropriate levels. It also affects my blood pressure, so I have to be careful. Despite the stereotypes though, it’s important to note that people who may have low empathy still have emotions and feelings; all autistic people are valid and important, regardless of empathy levels.
A note on therapies: I personally do not recommend Applied Behavioral Analysis whatsoever. Honestly, I would avoid it like the plague. From personal experiences, research, and seeing what my friends have gone through – I do not like ABA, especially as it has been shown to be traumatic. I’ll write up a post at some point, but that’s for another time. Good alternatives, however, are occupational therapy, speech therapy, talk/play therapy, and other things that are more based on providing self-determination and autonomy. I’ve also found that therapies that involve animals can be wonderful – if the autistic person is interested in this. Sports and activities can also be helpful in facilitating self-regulation, but again, this depends on the individual and their own preference.
One of my favorite tools for emotional regulation that I’ve come across is the Five Point Scale.
It’s often used for emotional identification, communication, and regulation. It provides a visual and more tangible way to describe emotions – and can be simplified for younger children and toddlers. I’ve actually attached some that I made at the end of this post, and you’re more than welcome to print them off and use them!
Other things that may come in handy include the use of color code badges or wristbands. These are often used in autistic-run events, such as conferences or conventions. They use Green, Yellow, and Red. I have this explained in more detail in the PowerPoint, and you can also read more about it here on the Autistic Self Advocacy Network’s website.
I hope this information is helpful! Feel free to message me or ask questions!
PowerPoint:
Free Printables:
The following are ones that I created myself!
Resources Used and Further Information:
I’m currently preparing for my session at an Autism conference, and my anxiety levels are through the roof. I’m covering how to best manage/prevent meltdowns, and ironically, I feel close to having one myself.
My last few posts have also been a bit serious, especially with it being Autism Acceptance Month and finals coming up soon. I’ve been busy between assignments, programs, and everything else. The end of the semester is always the hardest for me.
Also: after my presentation, I will post the PowerPoint and printables made – in case anyone needs it.
To make things a little less stressful, I present to you – cat pictures.
Is this post an excuse to post cat pictures?
Probably.
Does it make me feel better?
Definitely.
Content note: this post may be upsetting for some, especially for my fellow autistics who also are anxious about April.
And of course, April is ‘Autism Awareness Month.’
I’m already cringing inside. The urge to burrow underneath my weighted blanket until May is honestly very tempting.
You might’ve gathered it from my last post, but I suppose my fear deserves its own post.
April is a very anxiety-inducing month for us, and quite justifiably so.
Aside from the frustrating puzzle pieces and blue light bulbs, April consists of a lot more issues. From the crusades for a cure to the narrative that we’re a burden, it’s a hard month for us. Ironically, when we speak up during April, we are told to shut up or that our feelings don’t matter.
I’ve found that the hardest aspect of it for me personally is the constant reminder that autistic people are seen as burdens. From parent memoirs to Twitter tantrums telling everyone how hard it is, it’s actually really depressing.
Take for example a video I saw a while back, saying how they realized the last time that their child was ever going to be “okay.” It broke my heart.
There is no ‘last time’ your kid is going to be okay. Your kid, simply put, is going to be okay – if you give them that unconditional love, acceptance, and support. Autism hasn’t stolen your child. Your child is a unique individual who is deeply loved and wanted.
This video continues to contribute to the thinking that we are burdens, tragedies, a fate worse than death. And once again, that belief is why we have a Disability Day of Mourning for victims of filicide.
I’m beyond done with this narrative that we are so difficult to deal with, or that our parents don’t want us or they even want to kill us. I’m done with people telling me I’m overreacting or too emotional (the humor being that these are the same people that tell me autistics have no emotions).
Personally?
How do you think these videos make me feel, when the mother talks about her kid being a burden?
I grew up as a child waiting and literally hoping for my death, because I knew I was different and it was my fault that no one wanted me. I was convinced that I was too much to deal with and that I was a burden. I was in therapy by the time I was around 5 years old – because younger me was depressed. A five year old should not be suicidal, and I was too afraid to tell anyone that I was.
I spent my entire life thinking that I was a burden to everyone around me because of me being different, and that everyone would be better off if I was dead. I remember being seven years old and contemplating the best way to accomplish it – in ways that I wouldn’t dare to recount on this blog.
And you know what?
I’m not going to sit here at the age of 21 and listen to someone imply that I was a burden. I can’t spend all month listening to people constantly talk about us in a way that brings me right back to elementary, middle, and even high school itself.
And if I internalized this stuff (even before my diagnosis), I know there are children out there who have internalized it, too.
Thankfully, I’m not that severely depressed and scared 5 year old little girl anymore.
I am an autistic disabled woman who will be a force to be reckoned with, and I will FIGHT to protect disabled kids from being told it’s their fault and that they’re just a burden. I will do everything in my power to protect other autistic children from harm.
Our kids are internalizing this. This autism awareness needs to shift away from the negativity and fear.
We don’t need simply just awareness anymore.
We need kindness, and understanding. We need accessibility and accommodation.
Most of all, we need acceptance – that we’re not broken, weird, and unworthy to be loved.
Right now, the only message that we hear throughout all of April and its blue lights is that our existence is tragic – and that being alive is a burden to everyone around us. So many times I have told other autistic kids I was on the spectrum, just to hear them gasp in surprise – because they said they didn’t think autistics were able to do “cool things” like own a pet or have a boyfriend. They’ve been taught for so long that they are inferior, when they have so many strengths.
And that’s why I choose Autism Acceptance Month instead. My fear of April is nowhere near as strong as my fear of other autistics feeling inadequate and unloved.
Our kids deserve better.
Our teens deserve better.
Our adults deserve better.
All of us autistics deserve better.
I imagined I’d make an eventual post on my disdain for Autism Speaks eventually.
While all the chants of “Light it up blue” and puzzle pieces surround us as April approaches, I’m already covering my ears.
Surely by now, people are aware of the horrid things Autism Speaks is responsible for. Right?
…apparently not.
If I see another blue puzzle piece, I will scream.
People have made cases against Autism Speaks over and over and over again. It’s fairly well-known that they’re a terrible “charity” at this point. Even a lot of the families that I have worked with locally have expressed how much they detest the organization – especially regarding a lack of supports and how the organization has added to stigma.
Whether it’s because of their poor charity rating, or their support of the Judge Rotenberg Center (a place that literally tortures autistics and has been denounced by the United Nations), their horrifically terrible financial nonsense, or even their direct obvious hatred of autism and autistic people – they’re overall just a terrible organization. (For the record, I’ll put up a page that has all these resources listed at some point).
This organization is one of the reasons I never got diagnosed as a kid – because “autism only affects young boys. This website says so.”
This organization is one of the reasons people think we are tragedies and burdens. The fear and stigma they push is one of the reasons people tell me I should never reproduce or that I shouldn’t even exist. They pushed out the false narrative that we are a fate worse than death. They say we ruin lives, marriages, family outings.
This organization is one of the reasons why the world wants to cure us – to find a prenatal test to literally stop future autistic people from existing.
This organization is one of the leading organizations in the US, yet there’s so little input from actual Autistic people. It’s run by CEOs and business leaders more than anything else.
A lot of us even consider Autism Speaks to be a hate group.
Autism Speaks doesn’t speak for me. It doesn’t speak for my fiance, my brothers, or my friends.
We can speak for ourselves, if you would just listen.
We are begging for people to hear us, listen to our stories as autistic people. Whether through voice, text, signing, or augmentative communication – we are speaking.
So, no – I will not be lighting it up blue. I won’t wear a hint of blue, and they won’t receive a cent from me.
I will go Red Instead.
I’ll ‘Tone It Down’ Taupe.
I’ll do anything except light it up blue this April.
As I type this, there is a large gathering of people assembled outside in D.C.
You may have not heard, but the disability rights’ organization ADAPT has been fighting relentlessly for the FDA to ban the torture on people with disabilities.
The Judge Rotenberg Center, in the middle of it all, is notorious for its usage of electric shocks on autistics. They claim it’s for “behavior modification,” a blanket statement that lets them abuse people as they please. The regulations against them were written two YEARS ago.
The UN declared it to be torture.
The FDA has already proposed to ban it.
Those who have been subjected to the torture have described it as “being underground in hell” and a punishment “for being disabled.”
Autistic activists have fought against it.
They have cataloged and put together information.
Most of all, they speak up.
The victims speak out.
And yet, the regulations haven’t been passed.
FDA Director Scott Gottlieb will most likely never read this.
But if he did, I have this to say:
Listen.
There are autistic people and people with disabilities being literally tortured. These aren’t just little shocks of punishments (which is still wrong) – this is torturing disabled people simply because it can be done. They can’t stand up, leave a coat on, or exercise autonomy without the fear of the shocks. Not only this, but the victims are in so much pain from the inflicted abuse. This isn’t just about politics; this is a human rights violation.
You have the ability to stop this. You can end the pain, protect others from violence, and prevent the torture of future victims.
Dr. Gottlieb, you have a moral obligation as a M.D. to protect patients and their well-being. Release the regs, ban the devices, and stop the shock.
If you want to learn more about ADAPT’s efforts to fight against this violence, you can go to their website here: http://adapt.org/JRC
Likewise, if you want to donate to help support the protesters, you can help here: https://www.gofundme.com/stoptheshock
