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:


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

Conferences, Midterms, and Naps

It’s official: I made it through half a semester!

Luckily for me, that means it’s officially Spring Break. Not that I’m actually on a break; I have things to do. I’m hoping that I can take the week to plan things and such. Our Neurodiversity Club is doing things for Autism Acceptance Month, I’m still ironing out the details with one of the departments for our film screening of Deej at some point, and I’m trying to come up with events for the community center. I’ve gotten in touch with the local law enforcement and emergency services to come in and meet our kids and teens, let them see the trucks and the K-9 dogs, and let them get familiar with each other. That should be taking place in April, if all goes to plan. Luckily, our local department does autism and disability training with all the officers, so I’m thinking it will go okay.

Our Disability Day of Mourning event went somewhat okay. We didn’t have as big of a turnout as hoped; still, we played a slideshow of the victims and read out the names – the most important part of the vigil.

DDoM Paper Chain
A colorful paper chain lying on top of a brown table. Each individual link has a name of a filicide victim written.

Some of our friends also spoke and shared some readings from I Am Not A Burden by Tuttle, ‘Remember‘ by Amy Sequenzia, and ‘On Our Backs We Will Carry Them by Ari Ne’eman.
On a brighter note, it’s been confirmed that I’m officially scheduled to speak at two conferences this year!
I’ll be doing a session at the local Autism Society’s conference later next month, and another at the Southeast Adult Autism Symposium in July. The first will be over tips for handling meltdowns and making transitions easier, and the other will be on executive functioning and independent living. (I’m already working on the PowerPoint for the second one.)

I’ll try to write more as things come up. One of my goals is to write more, so we shall see.

Disability Day of Mourning

Note: This post discusses the topic of filicide and violence against people with disabilities. Take caution in reading, and be mindful of how it may impact you. Your mental health is always important. 

On March 1st, my college campus will feel a little different.

Usually, March is the month of midterms, spring break, and a slight weather change for the better. You begin to dream of no longer needing that wool coat and scarf; instead, you stare longingly at those shorts you’ve been dying to wear since October rolled around. People begin to see the end of the semester coming near, and it’s exciting.

But not that day.

You see, the first of March is a different day.  It will feel more like shadows, the brisk cold wind still rushing past my face. It’s still winter, a bit darker and cooler than I’d like. Even so, there’s still a tinge of hope every time I step into a sun ray’s path.

March 1st is the Disability Day of Mourning.

Created in 2012 in response to the death of George Hodgins, an autistic man, the Disability Day of Mourning vigil is held each year to commemorate the lives of people with disabilities who have been murdered by family and caregivers. The Autistic Self Advocacy Network tracks cases of filicide, and each year, the names of the dead are read out loud. Just in the last year alone, more than 100 cases have been reported.

Sounds horrific, doesn’t it?

Yet, people will defend the murders as “mercy killings” or “understandable.” They try to justify it as “just a lack of resources” and say “it’s just so hard.”

This is where the problem lies. This is why our children, teens, and adults with disabilities are dying. Parenting and being a caregiver is hard, but that will never justify filicide. They never say these things about typical children’s deaths; why should a child’s disability change that?

Society and our culture views disability as a fate literally worse than death.
Autism is feared so deeply that our society shuns those on the spectrum and grasps at straws to “cure” us – when we are literally begging for supports, accommodations, and our voices to be heard instead. Intellectual disabilities are so stigmatized that people forget the joy and beauty that each person brings to the table. Physical disabilities are seen as difficult to accommodate – but that accommodation is a civil right and deserved.

This stigma, negativity, and fear is exactly why people are dying. People get so convinced that disability is the worst thing to ever happen to someone, and immediately decide that our lives are less because of it. They decide that being a caregiver is just too much, and they choose to kill us because they think we’re the problem.

We’re not the problem. We have never been the problem at all.

As an autistic person with mental and physical disabilities, my life is automatically seen as less in the eyes of others. I already struggle with chronic depression, but the outside world has much more to say. I am painted as a burden by society, a drain on resources. I am seen as weak, weird, and a liability. I am told all the things I will never do, and all the things I shouldn’t be allowed to do. Society tells me that I will not have my own home, have children, and that I will never be able to live independently.

I have been told directly by others that I should not be allowed to live, and that I definitely should never reproduce – lest I continue to ruin the population. I could very easily be one of these statistics. Whether it be my autism, PTSD, brain injuries, or dysautonomia that forces me to use a wheelchair and cane – I am easily classified by society as a burden. Would my murder be considered a “mercy killing?” Some would say yes. At this point, it does not surprise me.

Society is wrong.

My life is not worth less just because I have a disability. I am disabled and I am allowed to take up space in this world just like anyone else.  I am capable of experiencing love, joy, sadness, heartbreak, and the multitude of emotions that make up a life. Even if I live a life that is different, I am allowed to exist.

My community is entitled to the same human rights that everyone else has. We are allowed to exist.

We shouldn’t have to convince the world that we should be allowed to live; yet, here we are. My community holds up a candle, a symbol of remembrance and illumination. We come together, whether in person or online, and we stand in solidarity with one another.

Here I am, a broken record constantly assuring myself and my community, “Yes, I belong. We all do.”

On March 1st, light a candle for those we’ve lost – and those of us who are still here to fight.

To find a local vigil near you, ASAN has provided a list here: http://autisticadvocacy.org/2018/02/2018-day-of-mourning-vigil-sites/

An Open Letter to Parents and Caregivers

To the parents of kids with disabilities:
Take it easy.

Take a breath.

Be gentle on yourselves.

More importantly, be gentle on your kiddos.

Parenting is difficult, no matter how typical your child is (or isn’t).

It’s tough, especially when you have to worry about things that other parents don’t. Those late nights where no one can sleep, stressing over IEP meetings, the seven cups of coffee just to survive until noon, all the doctor appointments… it can feel like too much.

When you’re surrounded by so much negativity, it’s so easy to become overwhelmed and distressed. The world will list out all the things your kid will never do, and all the limitations that come with it. You’re hearing from every angle that disability is a horrid experience and people telling you how much less their lives are worth. You become convinced that your kid won’t ever have a normal life, and you have so many fears of what the future is going to hold. I feared this for my brother so much. I fear it for myself.

Take a breath.

Go easy.

Listen for a moment.

Let me introduce you to my community.

As an autistic adult who has several co-occuring disabilities, the disability community is a lifeline for me.

I know of some really great people in my community who do amazing things – with their disability, not in spite of it.

I can name several nonverbal autistic people who blog and educate.  I know some people from online support groups that are in group homes or under guardianship, because they can’t live alone safely. They’re the people who are often considered “most like your child” or “low functioning,” yet they all prove over and over that they are not machines you can classify. They are human beings with their own values, opinions, and autonomy- and deserve to be treated with respect. All of us autistics do.

(Reminder of my intense loathing of functioning labels here).

Some of them have published books. Some sing. A few knit, paint, or do other types of art. Many are kind and are the first to offer sympathy in hard times. All share their stories; each are unique and beautiful in their own right. They’ve made marvelous strides in positivity and accessibility, by pushing for acceptance, understanding, and respect.

I can tell you of people with physical and mental disabilities who are really great people. Comedians, lawyers, activists, teachers… the list goes on. I know people with feeding tubes who run businesses, people with diabetes who make some of the best nurses out there. I know fantastic people who rely on screen readers and get things done, graduating with honors. I can tell you about my college dorm Resident Advisor who was Deaf, ans always facilitated the *best* floor meetings. I can tell you of people with schizophrenia who are the sweetest and very clever. I know children fighting against conditions that are deadly and bleak, and the adults that those children become – brave, insightful, and possess the best humor. I know of people with Down syndrome that have addressed governments and society’s stigma. I know people with cerebral palsy who are amazing writers and wonderful friends. I know people with POTS who can make the absolute best cheesecake and desserts.

People with disabilities can still live wonderful and happy lives. Sometimes, you don’t even know they have a disability; it’s okay to be disabled. Disability is natural.

We don’t have to be famous or savants to be full of worth and loved. We don’t have to work high paying jobs or get a PhD in order for our voices to be heard, either. Your child’s worth is not determined by how much money they can make or how well they can pass. Striving for “normality” or passing as “normal” isn’t the goal for us. We know we’re not part of the ‘typical’ crowd – and that’s okay.

Don’t mourn for us. Celebrate and stand with us instead. We don’t want pity; we need acceptance and accessibility.

Right now, the world seems like a scary place. Your kid might not be a savant or amazingly talented at one or two skills. They might have difficulty with certain things that you don’t think they’ll ever be able to do – and that does happen sometimes. But not always.

One day though, your kid will grow up. Autistic kids tend to become autistic adults, a fact that you know often goes unnoticed. You may be terrified for their future, and that’s understandable. You may worry about future employment, future family life, what will happen to them.

That’s okay.

Take a breath.

Meet up with a therapist. Join a group that celebrates the positives, not just dwells on the negatives. Don’t fall into that trap of despair and negativity. Society tells us enough that we’re burdens; trust me, the last thing your kid needs is to hear it from you too. Your child is precious and loved, and they need you to be their safety net who will love them unconditionally.

Look after your mental health; that’s something all parents need to do, not just when you have a child with a disability. If you’re struggling, reach out. There’s no shame in asking for help. It’s better for you – and for your child. Your kid needs you, and they need safety and stability.

Let your kid take a breath.

They’re kids. Take them to playdates with other children. Find peer support groups. Help them find ways to adapt to a world that might not be accessible enough for them.

Let them play, laugh, and make mistakes. Let them be themselves. They’ll grow in their own way, at their own pace.

Advocate for your kid, love them unconditionally, and help them establish self-determination – even if at first it’s just choosing which clothes they want to wear that day.

And always, always presume competence. Your child will always understand more than you think.

And finally, take a deep breath.

It’s getting better.

The future is slowly getting brighter, thanks to the people with disabilities and allies who are breaking down barriers every single day. From the ADA to the IDEA and accessibility laws – the disability community is pushing through and tearing down the walls that have kept them out.

Your child is in good company.

And know that you’re not fighting alone. We’re on the front lines too, for both us and people with disabilities who will come after us.

Just like you, we’re not giving up any time soon either.

Life Updates!

Apparently, the beginning of 2018 brings a lot of change.

It’s not something that a lot of people like, but for autistics – even more so. Even when the changes are great.

Over the winter break, I moved dorms! It’s a lot bigger than what I’m used to, and it has a laundry room in the apartment AND a window. Seriously, I am beyond excited about actually having sunlight in my room.
I also have a roommate, who is quite nice. She has postural orthostatic tachycardia syndrome just like me, which is exciting.  We’re good friends, so it’s working out quite well.

As well as that, we started out with the new semester this week! I’m looking forward to the classes, as most are online.

I’m also going to Nashville later this month for an appointment at Vanderbilt Hospital. I’ve been waiting a year to go, so I’m excited. It’s a long drive though, and I’m dreading it a bit.

I also turn 21 this month. I’m not sure I’ll even celebrate it, as it just doesn’t feel that important.

Even though all the change is positive, it’s also very stressful and draining. I’ve slept so much lately that it’s a bit ridiculous – and there’s still boxes all over the place because I haven’t had the spoons (energy) to even hang up drawings on my wall. I’ll write up a post sometime soon regarding burnout and tips to avoid it, once I manage to actually do well at it.

To be honest, I think the cat has adjusted much better and more quickly than I have.

A tabby cat with green eyes looks very grouchy after her nap was disturbed.

Seriously, she’s loving the place and thinks she owns it.

Then again, my room is filled with her toys – so I guess she does already own it.

Once this month and adjustment period is over, I should be fine. That’s what I’m telling myself, anyways.


Hope Defeats Fear, Every Time

[The words ‘Hope defeats fear, every time’ on a beautiful night sky background.]

It’s that time of the year again.

The semester begins to drag itself to an end, the weather chills and bites, and the Christmas music plays on a continuous rotation in every store.

For many, the Christmas season is a time of excitement and joy. Adults and children both delight in the trimming of the Christmas tree. The shimmering lights go up. The smell of sweet sugar cookies wafts across the kitchen.

For others, this month is hard.

Perhaps, this is the first Christmas without a loved one at their side. The chair is empty this year. It’s a bleak reminder that they will soon be facing a new year – without them.

Maybe, they are alone this Christmas. Alone in the streets. Alone in the hospital. Alone in their apartment. They may even be surrounded by many, but still have hearts and minds placed in solitary confinement – not by choice. Some may simply be too overwhelmed, and their mind is far too deep into the sensations that surround the holidays.

Possibly, the trauma resurfaces for them. Past Christmas memories are not warm and fuzzy. There isn’t hot chocolate, cheesy movies, or an Elf on the Shelf making mischief. Instead, screaming. Arguments, traumatic flashbacks, and the smell of something they would much rather forget. Strong emotions, but they are far stronger – and they don’t even know.

There’s even a chance that they don’t know why it’s so hard. Brains are a bit quirky that way. Sometimes there is no reason to feel sad, but human emotions rarely stand to rationality.

For a season of hope and joy, there’s not always enough to go around. In today’s climate, our worlds become dominated in fear.
The news gets bleaker, the days are colder in a plethora of ways, and there has to be a little light shining somewhere. A little ray of hope to shine into the fear. Something to make it more bearable.

A little hope won’t cure chronic depression or trauma; I’ve tried. I’ve begged. I’ve cried.
Little by little, though, hope shines through. A trembling torch in a swirling vortex.
It’s not a cure. A candle isn’t necessarily going to illuminate the entirety of the void.

For that brief moment, however, a corner is bright. That spark of hope is enough.

It reminds me of the candlelight vigil we held when I was in high school, a dark moment of loss. The autumn air was bitter, and the wind reveled in blowing out our candles – a bleak reminder of how each candle is extinguished so easily.
Most teenagers consider themselves invincible. I waited in fear, even as a child, expecting to be plunged in my own darkness at any time. The loss of close friends, family, and so much more catches up quickly. Candles begin to represent human lives, hope, or perhaps even something more. The problem is that they never last long enough.

But, when it comes to hope, there is a marvelous thing about them.

Something magical happens as someone else lights a candle.
Two candles together may create more light to illuminate the void, but the joy comes in more than merely the brightness.

As a candle is extinguished, its flame is rekindled when in contact with another still lit.

This is how a candlelight vigil begins. One small flame ignites another, and it spreads. From hand to hand, the warmth is gently passed on.

This is how a revolution begins. Just a spark.

In the midst of the heartbreak, the loneliness, the fear – hope is slowly passed from one hand to another’s. It may not brighten the entire universe we inhabit, but it makes a world of a difference for the person holding the candle.

This holiday season, in every season, pass the candlelight on.

Reach out to those in mourning. Be a companion to the lonely. Support those in recovery. Extend compassion and support to others who might be struggling.

Even the smallest spark of hope can be enough. A little hope goes a long way.

And over the past twenty years, I’ve made one singular observation that has not yet failed me:

Hope defeats fear, every time.



– Courtney

A Label on Functionality Labels

Note that this article contains a discussion on functioning labels, medical bias against autistics, and similar topics in the autism community.

One of the most common questions I get when I mention being autistic is “So, you’re really high functioning?”


As I’ve mentioned before, functioning labels aren’t really my thing – or most of the autistic community’s either. There’s been a shift from functioning to support levels, or simply just saying what the needs are for each individual person (my personal preference).
I personally think functioning labels are rather harmful – not only for autistic people, but their families too.

When you’re too ‘high functioning,’ you’re denied supports you desperately need simply because you’re not “bad enough” in people’s eyes. And when that happens, we are at risk of becoming the statistics: mental illness, homelessness, lower life expectancy. You’re denied a voice in the autism community because ‘you’re nothing like my child’ – although there will always be a difference between a five year old child and a young adult.

When you’re too ‘low functioning,’ you’re denied the autonomy that you so rightly deserve. The assumption lies that you are unable to experience life – no love, no voice, and that you’re a burden. You’re denied a voice in the community because “you don’t know what’s best for you” and to not “bite the hand that feeds you.” Calling someone “low functioning” is cruel and dehumanizing, and expectations for their quality of life are set low.

Autistic people deserve better than this, no matter where they are on the spectrum.

For families, the harm lies there too. These functioning labels hurt everyone, not just the people on the spectrum.

If your kid is “high functioning,” it’s a ‘discpline issue’ or a ‘your kid isn’t really autistic’ to the quiet yet outright denial of services such as IEPs and behavioral intervention plans in schools. You read in horror of how your child could become one of those statistics from above, and you are judged because your kid “seemed fine yesterday.”

When your child is considered ‘low functioning,’ you’re painted a horrible picture of their future. You’re (wrongly) told that your lives are over, and that they’ll end up institutionalized. Your child will be less likely to receive life-saving medical care such as organ transplants – all because their quality of life is seen as less.

Let me describe to you two separate scenarios of how autism can present itself:

  • In the first scenario, we have someone who you would consider quite independent. This person can speak somewhat eloquently, although they might seem a little “odd.” They live alone, make their own appointments, and are involved in several different things that keep them very busy. They have the occasional meltdown, but otherwise are seen as not having too much trouble. A schedule is absolutely necessary to keep them grounded, and they have a special interest that they are happy to share about constantly – which can cause some social difficulties.
  • Within this second scenario, this person is seen as needing high support. Professionals have said they are not suited to independent living whatsoever, and their paperwork says they have “severe limitations” that keep them from living an average life. They are unable to drive, have to be prompted to eat and use the restroom, and are often non-verbal when overwhelmed. They have self-injurious behaviors such as hitting their head, severe picking of the skin, or scratching. It’s also difficult for them to communicate where they are hurting and sick until it’s too much to handle. They rely on scripts for all interactions in order to communicate, and phone calls are very difficult for them. Social events are extremely draining and hard to properly navigate.

Now, it’s pretty to simple to see which person is considered high or low functioning, right?


In case you hadn’t picked it up: both of them are actually me.

I’ve had several digs made at me by people saying I was too “high functioning,” and that people who are “low functioning” wouldn’t agree with the concept of neurodiversity. (Fun fact: yes, they do.)

I’ve had people tell me that my autism is obviously not a disability, because it doesn’t significantly impact my life – or that I was given the wrong diagnosis.

Considering I was in neuropsychological testing for about SEVEN hours, I think the doctor’s evaluation might have a little more weight compared to the person I’d met about five minutes ago.

I may look like I know what I’m doing, but almost 9 times out of 10, I’m doing what we call “masking.” If I was able to freely be myself, I’d be much more outward with my autistic behaviors. I was trained from a young age what was considered appropriate vs “too weird.” As a result of not being able to exhibit these behaviors, my mental health deteriorated. I threw myself into my academics and special interests instead.
By the time I hit high school, burnout was a huge worry for me.

Burnout is what happens when we autistics “mask” our traits and try to blend in with neurotypical people. When this happens, it can have disastrous effects. It can even  manifest itself in depressive episodes or mental breakdowns. For me, I feel incredibly run down and my depression becomes severe. My brain will hyperfixate on suicidal thoughts, and it’s not a state of mind that anyone should linger in. Add in the chronic pain/illnesses, the past trauma, and the hectic environment of college life – it’s easy to see why this is a problem. Sometimes I’m out of commission for a few days due to this mixture, because I know I can’t overextend myself or I can’t function at all. Over time and ~15 years of intensive therapy, I’m beginning to slowly build up coping skills and how to demonstrate more resilience.

People don’t realize just how much energy it takes for me to not curl up away from all the noise and people in public. Sometimes it’s too much, and I still break down crying. I had to learn how to play my part in this impromptu play-piece that everyone else appears to have memorized the script for. Because I learned how to be the human equivalent of a chameleon, I have the ability to “fake it” until I can get out of the situation.

When you have to grow up quickly, you learn ways to simply survive your current situation – and suffer the repercussions later.  It is exhausting to go through the motions, as if mentally checking off a list for each interaction:

  • Make sure to fake the eye contact; lip read, or stare at eyebrows if you have to.
  • Which script template should I use for this? Are they asking about classes or my cat?
  • Was that sarcasm? What’s in the context to tell me so?
  • Does their face actually mean that they’re happy or are they just tolerating me?
  • Wait, was that their name? I can’t remember what they look like.
  • Don’t make that squeaking noise. Don’t script something out of context. Don’t mention that thing that you just really LOVE because they reminded you of it.
  • Was that socially appropriate to mention? Oh NO I MESSED UP.
  • Ignore the light, ignore the sound, pretend your head isn’t hurting, ignore the pain from the tag.
  • Keep the noise cancelling headphones away; they’ll all say you’re incompetent.
  • How much longer can I take before I start crying and need to go hide in the bathroom again?
  • Do they actually like my existence, or do they secretly hate me? What am I doing wrong this time? How do I FIX it??

All of this rushes through my head with nearly every conversation, and it can be difficult. When I go non-verbal, my brain is just too tired to continue. It’s hard to make sense of anything, and my mind seems to have forgotten how to do words.

All of this to say: yes, some of us need more support than others. It’s a spectrum for a reason, and we all experience our autistic nature differently. We’re diverse, and we are all part of a great web of neurodiverse society.

Even so, referring to us as “functioning” degrades us as if we were machines – not human beings with our own emotions, thoughts, and ways of processing the world. It hurts not only us, but those around us, too. We need acceptance, support, and understanding. It’s not a race to see whose kid has it worse or which “Aspie” is more likely to be a savant. Functioning labels make this worse.

Based on that, I’d easily label the concept of functioning labels as harmful.

Each of us has our own unique struggles, strengths, and abilities. All of us on the spectrum have value and can make a positive impact in their world. Even the smallest act of kindness creates ripples and waves, and perhaps just the fight to exist and thrive in our society is revolutionary in itself.

I’m autistic. No more, and no less.