MASKING (OR: A guide to being an autistic woman)

MASKING • adverb
Any and all efforts taken to camouflage and hide someone’s signs of Autism Spectrum Disorder in order to appear neurotypical. This is mostly apparent with autistic women. 

Traditionally speaking, it is safe to assume that men are allowed the most leeway in terms of how they are allowed to act.  Females, on the other hand, are typically expected to act “ladylike” and “feminine.” Fortunately, we have several million progressive minds out there who are encouraging women of all ages to push past the forced “feminine behavior” and become exactly who they are.

There’s a unique pressure that gets put on women to act a certain way, especially when that pressure by women to other women. It can be expected that anyone out of this norm is considered abnormal. They’re weird, they’re an outcast, and they’re going to be outcasted. Or, maybe they’re neurodivergent and nothing is wrong with them whatsoever.

Deciding on whether they’re weird or autistic can be difficult, even impossible.  Women who are, in fact, autistic have done a fantastic job of developing a skill called “masking.” 

Masking is any and all efforts taken to camouflage and hide someone’s signs of Autism Spectrum Disorder in order to appear neurotypical. This is mostly apparent with autistic women. 

Because masking is the art of camouflage one’s actions to come off as neurotypical, it’s not uncommon that a woman will either have a delayed diagnosis of being autistic, no autism diagnosis, or an incorrect diagnosis. (An ADD or ADHD diagnosis, for example, is common.) Misdiagnosis has been a problem for as long as autism spectrum disorder has been a psychological disorder. In fact, for everyone that receives an autism diagnosis, approximately 1 in 42 are men, while 1 in 189 are women. This makes boys 4.5 times more likely to get a diagnosis. 

I understand that it can be difficult to find something that’s hidden from you, but this isn’t a matter of losing one sock from a pair, or misplacing your favorite pen.  The result of not coming up with diagnostic criteria is extremely detrimental to young women. 

An autism diagnosis can be lifesaving, allowing the parents of an autistic child to learn more about how to help their child and allow their child to grow into a successful adult.  The parent can tune their child’s world to better work for them, instead of changing the child to match the world’s neurotypical, nonautistic standards. 

Because of misdiagnosis, it is essential that we change the diagnostic criteria to include women.  If Autism Spectrum Disorder is just that ─ a spectrum disorder, then professionals ought to do everything in their power to make sure at least 50% of the autistic population  (women and transgender individuals) get included with their diagnostic criteria. 

GET RID OF LABELS

I was initially (and unofficially) diagnosed as having Asperger’s, a type of Autism Spectrum Disorder, at age four by a speech therapist. For a woman on the spectrum, this was a miracle. While speech therapists are technically not qualified to give their patients an official diagnosis, it helped my mom tremendously in getting me specially catered help and assistance.  

Whenever Asperger’s is used, it typically is followed by the words high-functioning autism, implying an individual is able to do some or most of the things a nonautistic person can do, such as talk, socialize with others, and participate in society.  There’s definitely a risk we take when using terms like high-functioning to describe disorders of any kind, especially autism. Most autistic folk will tell you it’s a gross simplification of our the way we think, and our personal strengths and weaknesses.  Personally, I cannot fathom why it’s possible, let alone moral, to simplify a complex organism that is the brain as something so binary as “high-functioning” and “low functioning.”  

The times, however, have changed for the best.  Instead of the “experts” being medical professionals, more and more autistic people have come forward to give first-hand testimonials on what their lives are actually like.  We #actuallyautistic people have to remind our neurotypical friends that the best source is the source.    

As a result, while Asperger’s is still used by autistic people as a way to describe themselves, we consider any description or mention of functioning language to be ableist, even if you personally don’t mean ill will by it. 

For me, personally, it’s barely okay if you simply state, “Morgan has high-functioning autism, or Asperger’s.” The intent behind this statement is that you are explaining what Asperger’s is in an extremely brief statement. 

Overgeneralizing as a rule is damning.  Someone’s complex brain functions cannot be described in as little as two hyphenated words; this can have some seriously negative implications.  Think of it this way: If someone asked you if you were high-functioning and you were to take offense to it, then why is it OK for you to ask an autistic person?

While I usually wouldn’t qualify Urban Dictionary as a legitimate source, one user laid out a very detailed definition of ableism that I’m going to borrow: 

Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.

Urban Dictionary

When a neurotypical uses the term high-functioning, I personally find it to be quite offensive.  I hope and trust that it may not come across that way to you, but you have to realize what high-functioning means to me. As I’ve stated before, autistic women will often be misdiagnosed because they are too “neurotypical” ─ they don’t show enough signs from the diagnostic criteria ─ to be autistic. 

More than this, it just puzzles me when someone thinks “you seem so high-functioning!” is a compliment.  What are your standards and ideas of what autism looks like? Am I supposed to be mute? Have you never formally met a real autistic person before to realize that we’re average people?

TOO AUTISTIC TO BE NEUROTYPICAL;
TOO NEUROTYPICAL TO BE AUTISTIC.

When a woman doesn’t get her autism diagnosis, she is assumed to be too neurotypical to ride the ASD roller coaster.  When a woman does show the signs of autism, it’s disregarded as something else by some professionals.  

When I actually decide to show signs of my autism spectrum disorder, and act in a way that feels natural and true to my character, I open myself up to side eye, side comments, and gasps of shock and horror. “Just be yourself” is a myth. For me, it’s join or die; eat or be eaten. You don’t have a choice to be yourself most days, so you choice to wear the mask. 

Having said that, you learn that life is a balancing act, and autism spectrum disorder is no different. I have a series of battles that neurotypicals won’t ever experience; that’s okay. I’ve gotten acclimated to that fact over the past two decades of my life. 

My biggest hope is that people will understand what these battles are and respect them.  I’m not expecting a pity party, just someone to listen to me.

My favorite example of someone coming by my side to truly sit down and listen to me is my newest ride-or-die, Stefhannie.  A week ago, we talked about my blog and my openness about my autistic identity.

“You have Asperger’s, right?” she asked.

“Yes,” I nodded with a smile. “The terms change all the time, and it gets confusing for even me to keep up with it, but I truly don’t mind being called that.” 

“I’m just so surprised that you are autistic. I have two [loved ones] that are autistic and you just don’t act like them.” 

The difference here is that Stefhannie wanted to learn more.  She was fascinated by my life, my blog, and was interested in learning more about the subject. It wasn’t just enough for her to work with people on the spectrum and have family or friends on the spectrum ─ she wanted to really know what their life was like.

So I told her ─ well, as much as one possibly can at a gay nightclub at midnight.  I explained to her that normality is a myth, and while “high-functioning” is okay for a 2-second explanation, it doesn’t even scratch the surface of what my personal problems and reactions to my life are.   

“I hear so many people go off about the dangerous, nonverbal person with autism that they happen to know, and it breaks my heart. If you had all these emotions, feelings, and stressors happening in your body, I’m certain you would react with rage yourself. Autistic people deserve better.” 

So, I leave you, the hypothetical neurotypical reader, with this: 

Support your friends who are neurodiverse.  Tell them you love them, and that you’re a safe person to confide in.  Life is absolutely miserable as is, coupled with the fact that we have a mental disorder (or two).  I cannot stress enough how much it means for you to sit down and take a few minutes to see how we’re doing.  It means more to us than you’ll ever imagine.

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Farewell, Dear Friend ♥

Yesterday night, I said goodbye to my best friend. 

Together, we shared so many wild nights and created so might solid memories within its walls. I got to take a few minutes to breathe, have my last dinner (pizza and curly fries), and say my farewells. 

My last meal

It feels confusing that a place you thought was doing fine is now closed. Shotskis served as a drag show venue, the go to place for live music, a delicious pizza spot, and a bar that catered to youth. I loved seeing kids at their all ages shows, exploring a world of magic and empowerment as the queens (and kings) performed for them. And once a month, we were always blessed with the appearance of a RuPaul’s Drag Race contestant. I never thought in a million years I would get to meet Alyssa Edwards and Latrice Royale  in my hometown! 

For the local musicians of Salem, Oregon, Shotskis was a great spot that allowed so many new and established bands, rappers,  and singers the chance to get their feet wet. It was truly the perfect venue for such a purpose as a lifted stage area and open seating made for a great atmosphere. “It’s been my favorite place to perform,” said Marshall Cuffe, who performs under the name Saint Syndrome. 

For me, Shotskis was synonymous with being my home away from home. Every time I entered, the cooks were always hard at work. The bartender greeted me with a wide smile. And I always felt a unique kind of peace I seldom experience as an autistic person. A peace that comes from getting to be myself, with nothing holding me back.  Weirdness was celebrated, and passion never went to waste. In fact, you could see the passion in just about everything that the bar had to offer, from the made-from-scratch woodfired food to the talent and the employees.

I am relieved to say that I’m hardly the only one who feels a piece of her soul has been connected to this bar.  Yes, the people haven’t gone away, and we will always meet again in the future. But it won’t be the same.

Nothing will ever be the same.

For last night’s final open mic night, the host declared a celebration. With our choice of beverage in hand, and our eyes filled with tears, we did just that. How wonderful and strong is a community that celebrates local talent and artistry!

More than anything, I’m honored to have met some very kind people who saw through me and never wanted me to lose hope. I get to continue to grow and achieve my goals because I have people like Adam, Jerid, and Joe in my life who empower me as I try to shine a spotlight on them. 

No matter what, I have my second chosen family. I have the memories. And I have had some of the best experiences of my life. 

Reflection: A Month of Improvement, Empowerment, and a Rockstar “Aunt”

July 27, 2019

Today’s counseling appointment was a huge testament to how much I increasingly love and respect Aunt Wendy. 

I had big fears about what we were set to talk about, which are gigantic issues I thought only had one solution ─ a solution that wouldn’t benefit me to any degree whatsoever.

With my former counselor, I found myself being talked down to with every appointment. It felt like I was supposed to come up with my solutions. All she could offer was, “what a shame, you’re better than that!”  

Additionally, what really hurt was her saying, “You’re one of my patients with the most potential. I wish you saw that.” She disregarded the fact that she knew what obstacles I was up against ─ or so she should have, after studying Autism Spectrum Disorder for the three decades that she claimed to have in her verbal resume.

It was always a game of superiority ─ not a drop of equality or humanity was felt. I didn’t feel an ounce of empathy. 

With my Aunt Wendy’s counseling sessions, we always meet in a conference room, thus allowing appointments to have the emotional feeling of a meeting. Wendy is my director, overseeing what can be done to make my life go from good to excellent. My mother plays the producer, working behind the scenes to make sure that I can shine and get any assistance I need. 

Each time we meet, mom and I both get a coffee, followed by a piece of paper Aunt Wendy calls her Problem Solving Action Plan.  Each of the four boxes reads,

1. For this problem: 
2. Here is what I will do: 
3. If this gets in the way: 
4. Here’s what else I can try:

In addition to writing these goals down, I have found myself writing in a notebook where I add onto the initial bullet points I put in my Problem Solving Action Plan. Because I am a detail-oriented person, it helps to be extremely specific about what goals I am needing to get done and how I can fulfil those goals. After every session, I’ll come home, type up those goals, and make sure that I have all my thoughts and notes organized in an easy-to-access location. (I have a folder in my Google Drive entitled “Adulthood/Counseling.”)

As we discuss my problems, there is always an undertone of reassurance and problem solving that involves both me and my mom finding equal ground and understanding.  Aunt Wendy applauds me with trying my best to make sure I see my parent’s concerns and disappointment, while I supply my personal requests from my parents. For example, something that I wrote in my journal entry this past week was the following:

I don’t mind being disciplined, as that is the correct reaction to breaking the rules and not doing what I have been told to do.  Having said that, I would like to have discussions that do not feel like a battle is beginning. I want to feel like we can healthfully talk about our feelings. As a result, I feel like that’ll help me and my dad get along better. 

At the end of this session, Aunt Wendy and I engaged in a heartfelt conversation about the questions I had regarding my book. 

I took down the following notes and have expanded off the bullet points I have written:  

Write this book for your people. You are a young millennial woman who is queer and autistic. Other millenial autistic people need to read what you have to say and relate to it, especially as so many people on the autism spectrum are queer.

There is a great balance of love and respect that my mom shows to my autism. She allows you to state what problems you are having, then adds on any side notes on how I can improve my situation. 

Publish your thoughts into your blog.  If I want to raise attention toward a certain issue ─ such as Autism Speaks and Jenny McCarthy ─ I would start about what they are doing, how it’s worked out in their favor, and why I find the organizations to be concerning.

And finally,

What did you wish you knew x amount of years ago? What do you feel needs to be said?

Letting My Freak Flag Fly: Celebrating change in anticipation for Pride 2019

Panic! At The Disco frontman Brendon Urie — who is Pansexual —
wearing the Pride Flag as a cape of honor.
Image courtesy of Billboard.

I’m not entirely sure how this Pride thing is supposed to work, now that I’m 101% confident about my bisexual identity ─ but I do know that there’s no right or wrong way to celebrate it as well.  So, perhaps by default, I’m already celebrating pride just by honoring myself.

I have been doing a lot of wholesome happy crying lately.  I will be sitting down, listening to a certain song or reading a quote that gets to me, and I’ll find the waterworks turned on. But instead of wanting to scream, I have a huge smile on my face.  It’s a feeling I thought I would never experience again, and I’m glad its back.

I have also found nurturing from the Facebook posts of friends who are also fighting their demons. These have proven to be personal favorites this year.  It’s that spiritual connection that makes them truly feel like my chosen family. 

As I have been given the opportunity to create event posters for Shotski’s, and as my blog gets read by more and more people, I feel as if I am finally getting to let people experience the artistic side of me that I thought was dead. (Turns out, she was merely in a coma, suffocating by that darned Narrator!) 

As art feels like my best means of communication in a chaotic world, the art itself becomes a message of “thank you” (posters) and “this is me. Thank you for accepting her.” The posters feel like I’m promoting my favorite people and venue; the blog feels like I’m able to share a personal journal of my struggles, fears, and experiences to an audience that, thus far, has been very gracious to me. 

Fortunately for me, whatever second thoughts I have had are being pushed aside by thoughts.  Instead of Narrator saying that “your writing will only be good if you want to hear yourself speak,” reality ─ the readers of my blog ─ reassure me that the Narrator ─ for lack of a better word ─ is a total bitch!

What else is gone is this fake confidence ─ this attitude cockiness that’s acted as a wall to hide how hateful I was being toward myself.  Confidence can be faked, but so can perfection. With the help of counselors and other healing methods, I don’t have to “be on” all the time.  I just feel like myself. 

Knowing that people have been responding positively to my artistic efforts reminds me that I’m not the only one who is benefitting out of this new, revamped Morgan. I’m thankful I have dozens of fans and supporters actively listening, wanting to help me and other folks who are autistic or mentally disordered. 

Mom and I took a much needed Mother-Daughter Bonding Day together on July 1.  Destination: Clackamas Town Center. The biggest highlight of that trip was getting to go shopping for Pride apparel. I told mom the aesthetic that we went for and she ran with it. We both ended up agreeing that an H&M bodysuit would be perfect worn under new high-waisted shorts and her white Keds. 

Mom, when you read this, just know that that moment was chicken soup for your daughter’s poor unfortunate soul. ♥

BY SOME DIVINE INTERVENTION, Jerid wanted The Year Of Reinventing Myself to also be the year he threw his biggest Salem Pride weekend to date.  With nearly a dozen events ─ and plenty of opportunities for the 21-and-under crowd to attend some events ─  it seems like there’s a little something for everyone. 

Adam ─ Jerid’s partner-in-crime and my favorite Chosen Family member─ has told me his interpretation of Pride as sadness to some degree.  Ever the historian, he knows that Pride isn’t all rainbows and drag queens. Queer history comes with a lot of horror to this day ─ especially with Trump as our president and approximately half of all states making it legal to fire someone for being queer.

Yesterday, Adam gave me the ultimate compliment: 

I’m so happy to see you working on your blog! I love you as a writer!!!

Look, I’ve been getting nothing but love from y’all about this whole writing thing. But when the guy who’s a literal older brother to you says, “this is it,” this is it!

Getting to spend my birthday with my bestie? Priceless!

THE BIGGEST PART of this year definitely had to be the announcement to slowly create my autobiography. Me and my mom each got some 70-plus likes to my announcement.

As a Shia Labeouf said, Don’t Let Your Dreams Be Dreams 

Perhaps my favorite part of my local LGBTQ community is the people themselves. There often seems to be this misconception that we’re all drama and yass queen’s. Which can be true ─ two percent of the time. 

The thing is, when you can’t help being born a legend, other people feel that sense of confidence and Pride and energy and aren’t sure how to react.  For one, I can tell you that it’s beyond addicting. As I told my queer friend (who was worried the clothes I gave her would be too youthful for her), being proud to be LGBTQ in Trump’s America means we win simply by existing.  So wear the dress!

As a queer autistic woman, it feels great to talk with other queer individuals that are both new friends, longterm associates, or local stars whose body of work I have admired for a while.   Watering each others gartens and watching each other bloom? PRICELESS. 

So maybe my Pride experience doesn’t have to solely be about my sexuality at all. 

Pride is supporting your friends as they fully introduce themselves as their true gender. 

Pride is supporting the folks who don’t feel comfortable coming out because they live with a very judgmental family. 

It’s laughing with my dear friends about anything at all ─ and comforting them through their hardships and battles.  

Pride is celebrating every little accomplishment we have ─ especially as so many of my friends are open about their mental health struggles, addiction, and suicidal thoughts.

I am completely ready to celebrate this year’s Salem Pride as a proud bisexual woman ─ with the help of her friends, and families, and acquaintences. 

I just hope to see you there. ♥

Changing of the Seasons

SOURCE: tuckergranvilleart.wordpress.com

It feels so weird to be happy. 

After a particularly damning battle with my depression, I’m finding myself feeling like a girl on fire ─ passionate, and ready to take on the world.

You see, anxiety is the devil on your metaphorical shoulder that says all kinds of things to disturb with your mind.  I personally call my anxiety my Narrator. When I take my Prozac, the chemicals in my brain tell my Narrator to be happy. When they make the connections happen, the basic function of the human body gets to happen. 

That is to say, I function in a relatively “average” neurotypical fashion. 

When I get in my head, it personally means that the Narrator and the real Morgan are at war.  Things that trigger the evil Narrator include not getting the help I need from school, feeling overwhelmed by my workload, and simply struggling to stay afloat. 

What really adds insult to injury is that a lifelong struggle that comes from my autism disorder is self-advocacy. It is absolutely torture to address my mom, a tutor at school, or a friend and tell them that I need help!

We don’t need no education

For some reason, this year was exceptionally strenuous.  Something just didn’t feel right. For me, ten-week terms go by faster than candy on a conveyor belt. The moment I seem to get my footing is week 4 ─ the middle of the term when midterm examinations are here and I’m left wondering how much material we have covered that would merit such a hefty test of our knowledge thus far.

Now, put all the stress of school together and add approximately five snow days to the mix.  You’re kidding me, right? 

But I should preface this by saying that the fall term really set me up for failure by me magically putting myself on the honor roll ─ the first term back in nearly two years.

For winter term, everything that could go wrong did go wrong. This last term felt lethal. I got out okay, but I needed help. I needed someone to just sit down with me, create a schedule, and make sure I had a firm foundation for success. 

The rules regarding accommodations in the Student Accessibility Services ─ which serviced students who have disabilities or mental disorders ─ weren’t much for help.  What really got to me is the fact that extra time was only allowed for students on disability aide who have chronic illnesses. I got extra time on tests, yes, and that came to be helpful from time to time.  But why were they assuming someone with a documented mental disorder could plan out her entire 12 credit schedule and keep track of homework assignments?

I forced myself into taking a third spring term against my judgment telling me it’d be a bad idea. What little mental health I did have went out the window as the 12 credits I took felt more like 21. 

Every morning, it was a literal miracle for me to get up out of bed. Anything else was extra credit.  It wasn’t even as if I had a tedious schedule ahead of me that day ─ just school, and a dog walking job. My body ─ especially my brain ─ was just flat out exhausted by everything.

I think I’m breaking down again… 

EVENTUALLY it got to the point where I put myself on autopilot.  Even my little job ─ letting out two adorable mixed breed dogs ─ became tedious. I only showed up to classes because we had paid for them.  

It didn’t make matters better that my former counselor ─ an LCSW who allegedly had years of experience working with autistic individuals ─ was adding to the pain.  Every session was more or less the same pathetic advice, which sounded to me like…  

Quit being a lazy bum. You’ve got too much potential. No, I’m not going to sit down and empathize, let alone figure out a plan of change! It’s just going to be one big superiority complex, wherein you are paying the $125 per session for me to tell you ─ the autistic person ─ that you have to magically get yourself together.

I’m Going Slightly Mad

In case you’ve never experienced the misfortune of your brain imploding, I will try to explain what the fine details of such an experience entails.  

Anxiety is every worse scenario, every doubt, and every thought coming to the surface, unearthing itself all at once.  These intrusive thoughts come at you with the speed of a thousand bullets. 

Why did you dress in all black? You looked cuter in that dress. At least it has some visual interest in there.

Is my butt crack showing? Do I need to pull up jeans, or finally wisen up and wear a belt more than once a year? 

Oh shoot, I forgot to get out chicken for dinner. Not to mention, I forgot to give the dog a bone before I left, and water the flowers. 

Unlike traditional pain ─ a broken knee, your foot falling asleep, a toothache ─ anxiety’s pains are invisible. I truly would be fascinated to see what went on in my brain when I was going through my suicidal period this year, and how that brain compared to my brain when it’s healthy.  Simply put, I wanted to see my brain attacking myself. Anything to prove that this stress and pain literally was “in my head.” 

Those of us who are neurodiverse shouldn’t have to live in a world where we are pathetically diminished for everything going on in our minds.   We simply don’t take mental health as seriously as we should ─ and that’s not just my sole opinion. There have been countless studies that have addressed there being a mental health crisis in the United States.

The YouTube comedian Trae Crowder ─ or “The Liberal Redneck” ─ commented on the mental health of our armed forces that come home with PTSD.  His stance mirrors my’n: We go all out to buy folks who lost an arm or a leg a new biotic one, but if they come home with PTSD and voices in their heads, we dismiss them as our crazy uncle Carl.

We don’t take mental health seriously. Insurance may not cover the entire cost of live-saving counseling ─ which literally is a doctor for our minds.  Because our pain is mental instead of physical, it can be difficult to judge what exactly we are going through, or what kind of mental disorder we have.

Fortunately, we have now discovered that there are dozens of various mental disorders, disabilities, and mental illnesses.  This is not “making up some new hocus pocus science stuff we didn’t have when back in the mid-20th century.” Rather, it’s about making sure we know what someone has so it can treat it properly.  You wouldn’t diagnose someone with cancer as having chicken pox, it would be unethical and incorrect.

Death and all of his friends

It’s a cold day in hell when a passionate person loses their lust for life. 

For me, depression is the result of anxiety, and anxiety is the result of my autism.

Autism is not being programmed in accordance to the neurotypical’s way of living.

Anxiety is stress from making sure you try to follow and obey the rules of society and of “normality.”  For example it gets crazy when you believe that fireworks are going to kill you because of how every nerve in your body fires up, tenses out, and makes you feel like you’re about to get eaten alive. Meanwhile, the rest of the world is celebrating them, telling you, “just wear ear plugs, you’re missing out on how epic they are!”  

The world seems to go against my very basic makeup. As I learned on Thursday, something as seemingly minor as changing the size of the frying pan I’m using to cook an egg on can throw me off my routine. 

Depression is my body’s answer to anxiety. When your Narrator becomes more and more vicious and even louder than your actual voice does, you’re going to want it all to stop. 

This is where things start to get interesting.  In small doses, depression can be okay. For me, anxiety and depression can work together, under the control of the Prozac, and keep me balanced. It can help prevent myself from overworking myself, and provides a nice balance of Autism Morgan (my true self), and the Morgan that has to present as a neurotypical.  

I just can’t keep hanging on… 

Spring term was a feeling of deja vu for all the wrong reasons, due to my inability to get myself out of my shell in order to advocate for myself ─ and my success.

But this time, I fully was done, exhausted from having to feel this pain.

Self-advocacy is a terrible life skill to be lacking in. 

I felt like I couldn’t talk to the people who mattered the most about all of these problems that were destroying me.  It was all in my head. I let myself go. I just couldn’t take my brain eating itself alive.

I’m wrapped in cellophane. 

Suicide, in my mind, was never about giving up or finding an easy way out. 

And for the record, that myth should have been busted a long time ago.

Suicide was the only way I could think of to silence my demons once and for all. To silence the doubt, angst, and the antagonism I was giving myself.  

I just wanted it all to stop. But more than that, I wanted myself back. 

We’re on Each Other’s Team

As I was starting to drown, there were three hands in particular that would help rescue me. 

The first belonged to my grandma.  We talked over Red Robin where she asked me how I was feeling and I explained what had happened.  I’m so thankful she was a counselor and had worked with a variety of kids when she was at various elementary schools. It has been so fundamental in her trying to understand my Autism. 

The second belonged to my best friend. In this life, I have found that all of my serious friends are people who get it.  Adam, in particular, got it, as he’s been open about his struggles, too. Sometimes, just need someone with a Coke in his hand who gives you the best hugs. Whose conversations will never fail to make us laugh until we cry. 

And then there was my mom’s manager. For some reason, all it took was me sitting down with her over Govt. Cup and really, really talking about how I felt and what I was going through. 

The best part of the whole experience was her unique way of making it feel so normal.  Just two women out for coffee. The prefacing and concluding conversations were just everyday topics ─ the welcomed summer weather, fashion (she has the cutest uneven a-line bob, and her glasses frame her heart-shaped face perfectly), and working out. 

When we got to the main issue, she was respectful but firm.  “I’m sure your mom told you I cried for you that night. I couldn’t sleep.”  She continued to be respectful, but firm, about her stance. She opened up to me about her personal life story, which reflected itself in my desire to want to run away and find my own independence.

(She found her freedom through service in the military; I’ve obviously found mine by blogging.) 

I have since changed counselors to someone who has also doubled as a life coach and instant friend. Each session feels like a meeting to discuss how I’m doing and what areas need some help.  

Her attitude: 

If you don’t end up meeting that expectation one day, or goal for the week, don’t panic.  You’re allowed to have an off day when you’re in the process of moving on from your past and starting over.

And with this in mind ─ and the faithful support of so many people ─ I have done just that.

I’m my Mother’s Daughter 

The most essential part of the healing process has been my Mama. Someone who simply hasn’t given up on me through these past 6 months of putting her through hell and back at least once a month. 

For her devout loyalty and services, I’m eternally grateful.

I never have taken her statement, “I will never give up on you” seriously. When she meant, “talk to me about your issues,” I thought she was just saying that out of obligation.  Truth is, I was wrong (as I frequently am), and she did want to help me out. Desperately, in fact. 

But even when I told her I give up and I was done, she was still there. If that isn’t a mother, I don’t know what the hell is. 

She encouraged me to talk to different people, get the help I needed, and forced me to get out of my shell in order to advocate for myself.  To state “I am angry with trying to refill my prescriptions with no luck, please help me.” Or to tell me that I needed to make an appointment for my psychiatric nurse.

And at the end of the 6 Months From Hell, she made sure that I had people to talk to and a new counselor.  She made appointments with friends and family to make sure I would have someone to talk to. And she helped talk me off the ledge. 

Honestly, what really did it for me was right before I got Govt Cup and she essentially said, “Pull your head out of your butt. If you want to go shopping, let’s go shopping and have a girl’s trip.”

And to this day, that’s exactly what I keep doing.  I have since made sure to spend loads of time with family as part of my self-care, I take my medicine, and I’m sure as hell to make sure that I’m in communication with the most important person in my life.

Announcement: I’m on the Write Track, Baby!

It has only been my third appointment seeing my new counselor and there has always been so much change. Goals are being specified, plans are being made.  

Gone are the days of having a counselor that merely shuns me because I’m showing no signs of growth.  I go to counseling with a big smile on my face each appointment because I know that she is 100% on my team, coaching me with respect and assertiveness as she helps me navigate life.  Today, as I left the appointment, she gave me permission to call her “auntie.” She reminds me of how my family is going to always change and evolve, and that we need to fight for each other’s needs and successes.

Today, she had an offer for me. Knowing that writing was my special interest and my top talent, she asked me to write an insert for her upcoming book.  I wholeheartedly agreed, and she said she would be in touch with ideas.  

The beautiful thing about my new Auntie is that she’s not only progressive because she wants to be, but because she sees the need for it. It’s great to see someone who went from being a schoolteacher to a headstrong activist and autism advocate, putting our needs first ─ nothing about us without us. 

My hope is that my paragraph will be a great addition to what I know will be a promising book.  She’s already doing so much to make sure that the data we have for autism is modern, updated, and relevant. 

Along with talking to me about the opportunity to appear in her next book, Auntie has also taken the additional steps to make sure I understand the process needed to submit my proposal.  Essentially speaking, the written proposal is an outline that acts as your job interview for a publisher. Just to make sure the proposal is outlined in the correct format alone will take weeks, let alone making the book itself. I still couldn’t be any more excited.  

Writing a novel has been on top of my literal bucket list for ages, and it’s been highly requested by so many people for so long. I literally told myself that I cannot bite the dust until I make sure that my message gets out there and that several people can be encouraged by it. With the darkest days of my life thus far closely behind me, I push on into far sunnier paths with the mindset of getting stronger. 

My new sense of autism and perspective has allowed me to rekindle my love and passion for writing. So it feels appropriate that the second I’ve been encouraged to write a novel is right around the time of a new beginning that comes with a fresh perspective.

For now, I’m going to continue blogging for the purpose of remembering what it’s like to get back to writing.  A project this big needs time to breathe, of course. But I figured that if you don’t put your goal out there, it’s just a mediocre wish, that idea you’ve been sleeping on but never will fulfill.

Here’s to the future. To continuing to write, no matter what my stupid brain throws at me, and to being ready for whatever else life is going to throw at me. 

MISTAKES WE MAKE WHEN WE TALK ABOUT AUTISTIC FOLKS

Don’t worry, even I can mess up sometimes too.

These past few years have seen Actually Autistic people reclaiming their disorder. With this comes a whole new series of rules and unquestionable facts about how we self-identify and how we address our Autism. 

But the world will never be perfect, and there will always be someone who still treat our existence as if it’s a pandemic. (Regardless of what pseudoscience believers will tell you, you can’t catch the Autism. Although it does make for a good joke between us Autistic folks!)

It’s been 9 days since I wrote my first blog post, “If I may be frank.”  The title truly was a warning sign ─ I wasn’t going to go easy on how I am feeling.  There’s too much misinformation out there for me to play nice. And what’s more, there are so many well meaning people in my life who I love, worship, and adore who simply don’t know anything about ASD or other mental disorders. 

I want you all to be educated, mindful, and respectful.  I don’t mind you using me as an example. But don’t use me as the token autistic person. (“My friend’s daughter says that you’re not doing autism correctly!”) I’m just one human being who happens to do a damn good job of expressing herself. 

More on this later! 

It is imperative that we all try to remember a few things about ASD in order to shut down the myths, lies, and just plain stupidity that exists about Autism.  So, let’s get into it. Because we have a lot to cover… 

Autism is a spectrum disorder. The whole title is called AUTISM SPECTRUM DISORDER.  Autism is a developmental disorder that affects the brain.  Spectrum means ASD appears in an infinite amount of ways. There are signature traits that people look for in order to diagnose someone as Autistic. You just have to know what those are.  

Keep in mind that some people ─ especially women and those who don’t identify as being on the male/female gender binary ─ may get diagnosed later, or be self-diagnosed because they cannot afford professional counseling. 

If you know one person with Autism, congratulations! You know one person with Autism.  If they say they’re autistic, and they have the look in their eyes that what they’re saying is the absolute truth, believe them.  

Self-diagnosis is valid.  

There are countless people who will never receive a “proper” diagnosis by a medical professional.  This is dangerous for a number of reasons. One reason is that medical professionals can sometimes have misdiagnosed people. (See the last point.)  

Self diagnosis is never valid for the village idiot who says extremely careless comments like, “we’re all a little autistic!” 

Stop rewarding us for acting neurotypical. 

Neurotypical (NT) is defined as not displaying or characterized by autistic or other neurologically atypical patterns of thought or behavior. 

When you tell us to stop flapping or fidgeting, this is no different than telling us not to blink. Hand flapping, rocking, fidgeting with a toy, and other similar actions are always done as a way to manage the stress and energy we have building up in our bodies.  

If you have met someone with ADD or ADHD, they might tell you they tap their foot or have a need to exercise frequently.  This is very similar ─ and perhaps could be one of the reasons why Autism can be tricky to diagnose.

One of the biggest things that neurotypical people will comment on is whether or not they are able to speak and act like one of their own. This is extremely ableist, and can be extremely damaging to people looking to get a formal diagnosis. So often, professionals may only look for the Autism signs provided from them by a “scientifically reputable source” that may not be all that reputable.

Many autistic people, including myself, have a love-hate relationship with the Diagnostic and Statistical Manual of Mental Disorders [DSM], which is currently on it’s 5th Edition. This is typically the book that will be used as a checklist for diagnosing Autism, as well as all other mental disorders.  

As an autistic woman, I can personally state that females (and trans people) on the spectrum get the short end of the stick.  The DSM bases its rules for diagnosing people as having Autism based upon criteria that’s based upon young males. 

We all know women and men are expected to present a certain way. This means that women have to act “more autistic” in order to be diagnosed.  

I will admit that I was blessed and privileged to have a speech therapist who told me that I likely had Autism in 2001, when I was still a toddler. This diagnosis has literally saved me by allowing my mother to fight for an Individual Education Plan throughout my public school career, and provide other necessary accommodations and assistance.

If you want to read more about women’s struggles with being diagnosed as having Autism Spectrum Disorder, please click here. The article, which was written by Scientific American magazine, is an excellent first-person perspective into the lives of Autistic women (and their parents) who have had incredible difficulty getting diagnosed. 

The official symbol of Autism Spectrum Disorder is a rainbow infinity loop, as recognized by the Autism Rights Movement and #actuallyautistic people

Stop supporting evil, anti-Autistic charities and symbols. 

To actually autistic people, the blue puzzle piece represents that we need to fit into a neurotypical world. 

We do not believe that it stands for finding our place. 

However, in the fall of 2016, before becoming aware of the puzzle piece controversy, I chose to have a simple outline of a puzzle piece be my first tattoo. I have talked with my autistic friends and they agree with my stance of using it as a piece of empowerment. Everytime I wear a top that bears my shoulders, I look in the mirror and smile.  “If I must be stuck with this disorder thingy for the rest of my life, I might as well make it fashionable and artistic,” I said to myself ─ and my Facebook followers earlier in the year.

Rainbows ─ especially a rainbow-colored infinity symbol ─ is used to represent diversity in the Autism community. Anyone can be autistic. 

“There is an Autism Epidemic!” 

First off, I’m not a disease. For goodness sake, I’m a human being who has a brain that works differently than most! 

The ratio ─ which currently sits at 1-in-62 ─ has changed rapidly over the years as more information and data gets collected by scientists who study the subject.  But this is an amazing thing! 

When we can find out that more people are Autistic, we can get them the help they so detrimentally need. If I didn’t get counseling, help with my school work, and if I didn’t have regular appointments with a nurse practitioner to prescribe me Happy Pills™, I would honestly be insane. That is no hyperbole ─ I would be miserable. 

If you have a child ─ at any age ─ and you think they might have some kind of disorder, go talk with a counselor or a certified expert. It will literally save their life.

Here’s another great Scientific American article to check out!

“You don’t look autistic!” 

The first time I was told this, I was about 14 and I felt flattered.  The second time, years later, not so much.  

My dislike of this statement goes back to the requirements of how many signs one must show in order to be Autistic.  It implies that I pass as a neurotypical and can blend in and be one of you. I also interpret it to mean, “society has done a great job of teaching people jack all about something that literally affects about 2% of the population.”  

Nearly 1 in 50 people have autism! We’re doing these people a disservice by not talking openly ─ and respectfully ─ about mental disorders and disabilities in schools more than making it a special class project.

“It’s PERSON WITH AUTISM.”

Actually, we use the term autistic.  This is no longer something we prefer ─ as part of reclaiming what is our’s, we require that you use autistic out of respect for our realities. 

I will add that it does vary from person to person. But 99.5% of the time, I’ll bet that the preference is for autistic when you are talking to people who are actually Autistic.

The reasoning is simple:   Autism is who we are. Autism is our brain, our spirit and soul. Our brains explains to the rest of the body how we operate, function, and experience the world around us. 

Autism isn’t some baggage I carry around. It’s literally who I am. I’m not a person with a United States residence, I’m an American.  In the same way, please use autistic person. 

“I wish I could cure Autism” 

Autism is incurable. 

Let me say that one more time: AUTISM CANNOT BE CURED.  No matter how many twisted “treatments” you have up your sleeve, Autism is me and I am Autism. 

If you want to cure autism, you’re basically saying that my very existence isn’t good enough for you. 

Usually this is said by autism warrior moms who are exhausted by their job. And while I respect that your child’s autism requires expensive treatments and countless stressful moments, you are doing them a disservice by saying things like, “I wish you could be cured.”

“Vaccines Cause Autism!” 

Do I really need to go there?  Vaccines target your cells to protect them from icky viruses and diseases like Polio and the chicken pox.  My Autism affects my brain. 

This is literally  the same thing as drinking Gatorade and expecting it to thin out your blood. 

PLEASE STOP HARMING YOUR CHILDREN THAT YOU CLAIM TO LOVE. 

“I am so sorry you have Autism.” 

This hypothetical statement is usually said to me out sympathy. And that’s fine! I’m thankful! 

Excuse me for putting her on the spot, but my dear, beloved English teacher once said this to me out ─ again, out of pure sympathy.  She had been to the IEP meetings and knew what I was up against by reviewing what I needed help with to be successful in school.  

But my reply to her was simple.  I paused for a moment, and shrugged.

“This is the battle I’ve been given,” I explained. “I could never have the power to teach hundreds of students at once and keep my cool in the process. I’m just thankful to have people who sit down and just…listen to me.”  

And if you’ve made it this far, I’m thankful that you, too, have been listening to my story and are here for the journey.