Uncategorized

An Open Letter to Parents and Caregivers

Courtney

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.

Uncategorized

Life Updates!

Courtney

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.

 

Uncategorized

Hope Defeats Fear, Every Time

Courtney
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 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

Uncategorized

A Label on Functionality Labels

Courtney

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.

Uncategorized

The Case for Identity-first

Courtney

[Note: this post is specifically in regard to the autism community. Many other disabilities 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.

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 volunteer in, I take the same stance. Every single autistic child that enters 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.

It would appear that 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 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.

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 my voice isn’t good enough, maybe some of the following voices are:

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.

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

As always, just keep stimming.
Especially when they tell us not to.

Uncategorized

Dysautonomia Awareness Month!

Courtney

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!

Uncategorized

Explaining Autism: With Cats

Courtney

Most of us have heard the saying “All cats are autistic.”

Usually it’s meant as a joke, but there is a hint of truth to it. I see a lot of behaviors in my cat that I recognize in myself. In explaining what autism is, I’ve found referencing the difference between cats and dogs to be a way of highlighting the statement of “Different, not less.”
Of course, the usual disclaimer applies: autistic people are not animals. We’re human beings. That really should go without saying, but life experiences have told me that some people need reminders in regards to our humanity.

First, meet Leia Lyta:

img_7258
A tabby cat with green eyes sits on a purple rug. She’s holding a red catnip toy.

Leia Lyta is my emotional support animal here at the university. I have PTSD with dissociative/derealization episodes, chronic depression, and a lot of other conditions in addition to my autism.  Her purpose is to help keep me stable and comforted. She also gives me routine; I have to feed her, clean the litter box, brush, etc.

Anyway, she’s going to help me explain autism. No, seriously. Stay with me here. It’ll make sense.

What is Autism?

Autism is classified as a developmental disorder, a neurological variation. 1 out of 68 children are expected to be diagnosed with autism. The predominant theory is that it is caused by genetics (considering both of my brothers are also on the spectrum, I quite agree).
People on the autism spectrum are all quite different, but there are some similar characteristics that we all share. This is where Leia Lyta comes in.

Sensory

One of the most significant traits of autism is a different experience in terms of sensory input.

We are often sensitive to light, sounds, touch, and other things. If we are startled or overwhelmed, we will react accordingly. This could mean fight, flight, and other biological responses to distress.

img_7292-1
My cat hiding in a paper bag with her tail poking out. She was startled by our neighbors’ music.

Sometimes different things can help with sensory regulation: weighted blankets, fidgets, and other things of this nature. Self-stimulated behaviors are what we call “stimming.”

img_7268
Leia loves to snuggle on top of my purple weighted blanket.

Stimming is just one way that we relax when we’re overwhelmed. We also do it when we’re happy, too!

dc1ab2a6-d49e-4589-ac81-04c53bf0060a-12252-000002e7f03efc53
Gif of Leia kneading because she’s happy. The caption says “Making biscuits”

Autistic people love to stim, especially with stim toys and fidgets. They help us focus and regulate our senses.

Funnily enough, Leia also enjoys fidgets herself – but mostly just because she’s curious.

2237ab6a-4a9e-43ac-a7b5-890e301248a4-12252-000002e6f0df5795
Gif of Leia playing with my fidget spinner.

One of the negatives of sensory differences is what we call meltdowns – or as I call them, the absolute Worst Thing Ever. They’re not enjoyable for us or those around us. I know when I have them, afterwards I feel as if I have the flu, hit by a truck, and ran a 5k all in one. I don’t have them as much as I used to since I’ve figured out how to cope a bit better, but when I do have them – it’s not so fun. They’re very scary for me, and sometimes even a little bit messy.

The best way to stop meltdowns is to help prevent it altogether. Being attentive to the autistic person’s needs is the best way. Are they struggling with transitions? Use visual schedules, timers, and other tools to help break it down to make it easier. Is it communication? Try writing, sign language, AAC, or even the Picture Exchange Communication System (at least in the beginning; I’d recommend transitioning from PECS to AAC as they get older). Sensory issues? Be aware of what their triggers are. If it’s bright lights, try dimming them or give the person sunglasses. For noises, try noise cancelling headphones, ear plugs, or give them earbuds to listen to music instead. Have a quiet place that they can retreat to when it gets to be too much.

img_7283
This was a couple of days after I’d first rescued my kitty. A very, very messy crate – as Leia panicked when alone, and kicked litter everywhere. I had to give her a bath after this. (Worst idea.)

Repetition, Repetition…

We love routine and repetition – a lot. Echolalia, special interests, daily routines – they’re all typical for us. Several aspects of our lives can be very repetitive. While many may consider this a negative, it gives us a sense of control and comfort. In a world full of surprises, our brains need this stability.

A perfect example would be ‘special interests’ and fixations. We will think about, play, or watch the same things over and over and over.  You might find it a bit odd, but we find it strange when people don’t have them!

774fddc1-5418-4e22-bfb1-bc01bedba510-2629-0000009710ad9477
Gif of Leia playing with her favorite toy – a round ‘turbo scratcher’ that she will attack for hours.

Of course, you’ll find that a lot of us love tablets, computers, and television. For some, this is a special interest in itself. A favorite television show, Minecraft, or a YouTube channel – these are all things you’ll probably see some autistic people drawn to.

img_7288
Leia is staring at an iPad and watching cartoon fish swim around.

This is also why you’ll find a lot of autistics love science-fiction, fantasy, or other fictional things.

img_7270
She enjoys watching Star Trek, especially The Next Generation and Voyager.

We also may like the same food, and might eat it every day. This isn’t uncommon, although perhaps slightly unhealthy (such as when the only thing I ate for months was ravioli). It could be due to the texture, the steps involved in preparing it, or just simply that we love it.

img_7264
Moon Pies may not be Leia’s favorite food (she’s not allowed), but she will make a persistent attempt. Very similar to me when I see pizza rolls.

Socializing

Ah, yes. The ‘fun’ part that everyone thinks of.
Typically, our social skills aren’t the best. Some of us are good at ‘masking,’ where we can kinda fake it (I am one of these people, until I hit burnout).

Sometimes our social ‘battery’ is just low and we’re not too interested. Playing and hanging out with others is quite draining! I have to pick and choose how much I can handle.

img_7269
Leia also likes to rest after socializing. In this photo, she’s snuggled with a teddy bear and hiding under a blanket.

Other times, we really do want to interact – but it’s just really difficult to understand social nuances and procedures.

A common thing seen in autistic kids and teens is a concept called ‘parallel play.’ This is when we play next to someone; we don’t always communicate with the other person, but it’s still a form of socialization. Sometimes when we’re a little stressed out, it can be good to just sit with other people and do our own thing.

img_7273
Leia sitting next to another kitty at my friend’s house. They didn’t interact much that day, other than when Leia started grooming her.

Eye contact is a big issue for a lot of us. For myself, it’s almost painful and definitely uncomfortable. I got away with it as a kid because I would read people’s lips (one of the perks of being hard of hearing). Sometimes we can focus on the conversation and the person much more when we’re not forced to make eye contact.

img_7271
Cats aren’t always too fond of eye contact either. Leia is a little distressed at seeing herself in the mirror.

People often think we’re stand-offish because we may not express things the same. We may not always enjoy hugs or like to be touched. Some of us don’t communicate verbally, or we may be a bit ‘awkward.’

Rest assured, we’re just as lovable as anyone else.

We just have our own ways of expressing affection – just as cats and dogs do! We might not do things like neurotypicals, but that doesn’t mean we’re any less valuable or worthy to love and be loved.

Our brains just work a bit different than other people’s, and that’s okay.