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 brothers 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 amazing 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, and always facilitated the *best* floor meetings. I can tell you of people with schizophrenia who are the sweetest.

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 and intellectual disabilities that have addressed world governments and society’s stigma. I know people with cerebral palsy who are brilliant writers, witty souls, 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 play dates 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 one more 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

img_8262
[The words ‘Hope defeats fear, every time’ on a beautiful night sky background.]

It’s that time of the year again.

The semester slowly begins to drag itself to an end, the weather chills and bites, and the Christmas music plays on a continuous rotation in every store (despite the fact it’s barely even November yet).

For many, the holiday season is a time of excitement and joy.  Families help cook the Thanksgiving meal together. 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 holiday season 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 year. 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 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 many different ways, but 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. My senior year of high school, we lost quite a few students.

Most teenagers consider themselves invincible. With my own mental health, I had the opposite thought. 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. Even one candlelight vigil is one too many.

The thing about vigils is that it’s such an emotional time, and humans cling to whatever representation and comfort they can find. When that happens, candles begin to represent human lives, hope, or perhaps even something more.

The problem is, however, that they never last long enough. The wind blows them out,  they’re clumsily dropped, the candle burns down. Seems apt, really.

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

When I was at the vigil, I noticed a curious thing. Every time someone’s candle blew out, another stranger from the crowd would offer their candle to light it back up. If the candle burnt out, others would offer to share their candlelight with them. If a child became scared of the flame, someone would  reassure and help them adjust their grip to feel safer.

I can’t help but think that something magical happens as someone else lights a candle. It’s a fascinating concept to me.

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.

Two candles together may create more light to illuminate the void, but the joy comes in more than merely the brightness. It’s the closeness, the feeling of solidarity as a sea of candlelight floods the crowd. It’s that quiet compassion that shows up in the midst of tragedy. When you think the world is a rotten and horrible place, people begin to show up in mass to confront the darkness.

And it all starts with one little candle.

This is how a revolution begins. Just a small spark in the hands of one person, clutching a candle and aching in every step they take.

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.

Life is far too precious, and it’s meant to be treasured. The human condition is full of tragedies, suffering, and pain. This is a given.
However, our existence is also peppered with moments of joy, instances of heartwarming compassion, a quiet hope that’s always followed humanity since dawn arose for the very first time.

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. Reassure and encourage those in fear and distress. 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.

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?”

Yikes.

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?

Wrong.

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.

The Case for Identity-first

[Note: this post is specifically in regard to the autism community. As an aside, the Deaf and hard-of-hearing community also prefers identity-first. However, many other disability communities still prefer person-first. Remember that some people on the spectrum may actually prefer person-first, and it’s always nice to ask. However, general consensus in the autism community is identity-first and is the default.]

“You are required to use person-first in this class. Otherwise, it will affect your grade.”

 

I am autistic, not a person with autism.

I don’t “live with” or “suffer from” autism.

Autism isn’t a roommate that eats all the leftovers from my fridge, or a cursed plague rained down upon me from the sky. It’s not a death sentence, a condemnation to a life of loneliness and disastrous consequences. Being autistic does not equate to suffering.

The only thing I’m “suffering from” is the lack of acceptance and respect.

Autistic isn’t a bad word.

It’s an operating system, a lens from which I experience the world around me. It’s how I enjoy each moment, embracing my own existence in a way that many others do not. It’s not a disease, no matter what anyone says.

Neurodiversity is necessary in this world, and autistic people are not less for being themselves. All of us have value – the happy flappers, those who use AAC, those of us who can hardly remember to feed ourselves half the time (shout out to my schedule chart and phone reminders). Our lives might look a little different than yours, but that doesn’t mean it’s any less meaningful. Being autistic means I can be lost in the same musical pattern for hours. It means feeling joy so intensely that all I can do is flap my hands because the excitement over seeing a butterfly is just far too much to contain inside.

Sure, being autistic means shirt tags that feel like cacti pricks. It means intense fluorescent lighting, a rush of voices in the room that leaves your head swimming. The constant desire to know where my limbs are for grounding, the need for a human guidebook. It means feeling like an alien in a world that isn’t quite suited for my functioning needs. It means that I’m not really supposed to live on my own, that friends and others check on me regularly to make sure that I’m eating and looking after myself.

That doesn’t make me any less. Instead, it makes up my existence. Living in itself is full of positives and negatives; being autistic is the same.

We exist in our own way, and we deserve to exist.

If you need person-first language to remind you that I am a living, breathing human-being, we have an issue.  By enforcing the use of person-first, you immediately make the assumption that my disability makes me less – and something that you have to separate me from in order to have any worth in your eyes. You imply that I am broken, but you’ll try to make up for it by calling me a person first. At the same time, you completely contradict my entire identity and tell me that my voice does not matter.

Working with children with disabilities in the future, my kids will not learn this.

My future kids are going to be loved. They’re going to learn that their disabilities make them unique, a beautiful boost to the natural diversity of humanity. They will learn that they are full of value – not despite their disabilities – but with the inclusion of them. I will teach them that their differences are needed in the world. In my home, office, or wherever I work some day, they will never need to feel ashamed of their existence.

In the community center I volunteered in, I took the same stance. Every single autistic child that entered that building is a precious soul who needs to be cared for and shown how important they truly are. The same applies for teens and adults, too. They are facing obstacles at every point of their lives, and we are all surviving in a world that doesn’t really take us into consideration.

In the meantime, I still have things to do.

My opinion as a disabled person is not always valued – especially in this area of study. It’s ironic how something so nice-sounding is actually incredibly dehumanizing. I have to be honest, the requirement made me feel medicalized and as if my community doesn’t actually matter.

It makes me feel like only the “professionals” get a say, instead of myself and the people I am meant to serve in the future. I’m struggling through college for a reason: to help future disabled children and adults to take pride in who they are and love themselves. Part of that requires to respect their community’s wishes and their disabilities. If we teach our children that they have to be separated from their disability, doesn’t that further the stigmatization? Being a good advocate requires nurturing our kids, not to make them feel negatively about their existence.

It made me feel humiliated when the class was asked to explain why “an autistic person” is obviously wrong – immediately after I had mustered up the courage to speak up and say we prefer that. I cried after I left, because I felt disrespected and my experience as being a part of the autistic community didn’t count. It was as if my autistic voice didn’t matter, and conveyed the constant, overwhelming societal routine of ‘shut up, we know what’s best for you.’ It reminded me of all the times I was told I was broken and the world doesn’t think my words have any value. Of course, the professor meant well – person-first has been pushed on people for years. 

I sent the professor several links to studies, articles, and stances to back up my feelings. The next class, he actually took the time to explain to the class how there is a movement for using identity-first. The fact that he listened absolutely astonished me, and he’s been a fantastic professor all semester.

Still, we have a long way to go.

Most people are rarely as understanding as my professor was. I’ve been quite lucky to have some very nice professors.

As autistics, we fight so hard to be accepted and to be able to exist in the world. When autistics speak, few actually seem to listen.

 

If you want to read more, here are some good resources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5545113/ : ‘The use of person-first language in scholarly writing may accentuate stigma’

https://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/ : ‘Why Person-First Language Doesn’t Always Put the Person First’

https://autismwomensnetwork.org/failings-person-first-language/ – ‘The Failings of Person First Language’

http://www.autism.org.uk/about/what-is/describing.aspx – A link that describes studies and information.

https://musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/ : ‘The Logical Fallacy of Person-First Language’

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3519177/ – ‘Person-first language: Noble intent but to what effect?’

http://aspitude.blogspot.com/2009/03/autism-first-language.html – ‘Autism-first Language’

http://doodlebeth.com/identity-first-language/ – A very informative comic

https://twitter.com/doodle_beth/status/899553495292026880 – informal Twitter poll that may be of interest.

https://www.eurekalert.org/pub_releases/2017-08/osu-sad082817.php#.WaSLL_syUzg.facebook – Disability pride and its effect on self-esteem.

www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/identity-first-language/ – Identity-first

Dysautonomia Awareness Month!

Update: since this post, I have been to Vanderbilt’s Autonomic Dysfunction Clinic! Not surprisingly, I was diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.

 

Make noise for turquoise!
Actually, maybe not too much noise. I’m in a bit of a quiet mood today.

FBbanner2

Dysautonomia: an umbrella term for medical conditions that cause a malfunction in the Autonomic Nervous System (Dysautonomia International).

The ANS is what controls automatic functions in the body – such as breathing, temperature regulation, heart rate, and blood pressure. Dysautonomia isn’t actually as rare as people think it is, but it’s not very well-known either.

I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS, for short; don’t worry, I’ve heard all the jokes).

POTS is when the heart rate increases by 30 beats per minute (bpm)  – or 120 bpm – upon standing. Some may have a decrease in blood pressure, but overall it usually stays the same or even skyrockets. Many people with POTS may faint (syncope) or experience pre-syncope, where they feel as if they’re on the verge of fainting. Dizziness, fatigue, excercise and orthostatic intolerance, headaches, and nausea are some of the common symptoms also seen. However, each person may have slightly different symptoms. Some people with POTS function relatively well. Others are affected significantly, and it can difficult to cope with.

I’ve been treated for POTS for over a year now, and my cardiologist recently ‘reconfirmed’ it this past summer when they did a 21-30 day heart monitor.

For me, this means that I have significant orthostatic intolerance and other problems. I’ve often fainted, although I tend to struggle with pre-syncope or collapse more because my body just doesn’t want to stay upright. When I stand up or walk, my heart rate skyrockets. It’s not uncommon for my heart rate to be 140 bpm after I transition from sitting to standing. That in itself can be very stressful. However, POTS isn’t limited to a high heart rate. My blood pressure also goes up as well, which is a bit of a nuisance.

12002195_832235113542036_3390048158369557604_n1
An infographic detailing all the various symptoms of POTS. There’s a lot.

 

In general, my body also has trouble with regulating temperature, migraines, severe fatigue, and blood pooling. Insomnia, nausea, and chronic pain are also typical for me. I also have problems with GI and absorbing vitamins, but that’s something we’re still working on figuring out. There’s always some sort of medical testing going on.

Heat and exercise can also make it worse. Like I said before, I’m not great with temperature changes and I can’t stand heat. I used to tolerate heat extremely well as a child, but now I can’t deal with it at all. Exercise is also difficult, especially considering just standing up gets my heart rate into the higher levels. Swimming is supposed to be very good exercise for POTS patients, but I haven’t been able to make it to the pool yet this semester.

Basic activities such as cooking and simply walking is exhausting for me. This combined with my executive functioning skills sometimes means I’m just too tired to make food or make it to class. If I do make it to class, my brain fog can create difficulty concentrating and comprehending – something that makes my mild neurocognitive disorder worse. Currently, my ability to function is comparable to someone with congestive heart failure. As for quality of life, it’s considered to be similar to patients on dialysis for kidney failure.

This also means that when I get typical illnesses like the cold or flu (I call it getting “muggle sick”), I’m out of commission a lot longer than I normally should be. My body doesn’t handle it well, and even a simple virus can land me in the emergency room.

I end up in the ER a lot due to complications of it, especially when I’m not able to drink enough fluids (no, seriously; I’m supposed to go through a lot of Gatorade). Amusingly, I was in the ER last night due to a viral infection that exacerbated a lot of problems with my POTS – severe dehydration being one of them.

snapseed
Taken literally last night at 1:00am. Getting a bag of fluids intravenously due to dehydration – and looking very grouchy too.

 

To help function better, I use a wheelchair to help get around campus and places where standing is constant. I’m hoping to eventually get an electric wheelchair to help me get to class, as collapsing on my way to Writing class isn’t going to do me any favors. I’ve already missed quite a bit (between POTS and other illnesses, everything’s been a mess), so fingers crossed that gets approved soon. If it does, I could even do my exercises in the pool! It’s all about fatigue, brain fog, and not passing out, honestly.
I do use a cane if I’m in a cool, flat small environment with lots of chairs. My balance is really terrible (yay for mild TBIs and vestibular issues), so I have to have some sort of mobility aid anyway. All of that said, it’s extremely important to keep up leg muscle strength. Deconditioning can make POTS so much worse, and that’s definitely something I try to work on. I personally hate having to rely on my chair, but it also allows me to do more – and to save energy so I can use my cane later!

20245568_1378080302308245_5756043257872383193_n
Me sitting in my wheelchair and hugging a dog during a volunteer event at the animal shelter last spring.

I also eat lots of salt and drink Gatorade, as well as wear compression tights. The salt and Gatorade are good for blood volume and hydration. The compression tights are great for the blood pooling and swelling, but they are also the worst thing ever for sensory problems. Typical, really.

There are some conditions that many people with POTS also have: Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and Gastroporesis. I’ve not been diagnosed with the first two personally, but I have several friends who have. However, my GI doctor is convinced I have Gastroparesis.

There’s no cure for POTS, unfortunately. I’ve been referred to Vanderbilt for an appointment with the Autonomic Dysfunction clinic, so it’s more of just a waiting game at this point. One of my friends recently went, and I’ve been told good things about it!

While POTS is supposedly “rare” according to Google, it’s probably far more prevalent than what people expect. A lot of people are diagnosed with anxiety first, because doctors don’t always have experience with it. Dysautonomia itself is definitely not rare, especially considering all of the different forms it takes! Not only does it encompass POTS, but it also includes Neurocardiogenic Syncope (NCS) and Multiple System Atrophy (MSA).

If you want to know more about Dysautonomia or POTS itself, there are a few really good websites:

http://www.dysautonomiainternational.org

https://www.dinet.org/

http://www.potsuk.org/

If you know of any others, feel free to let me know and I’ll add them!