Unmet Needs During the Pandemic

By Lisa Morgan M.Ed. CAS

**Content warning: Suicide

Crisis supports for the autism community are sparse.  Autistic people need support specific to their way of thinking and understanding the world.  This often differs from the type of support available for the general public.  Thankfully, there is an existing research study published in Molecular Autism that we, autistic people, can use to help ourselves now, in real time, as we need it during the pandemic.

This research can help guide us in how we can take care of ourselves and our loved ones as we experience the unexpected changes in the world.  The immediate changes we were unprepared for in all aspects of our lives can be individually traumatic.  Processing the experiences as they happen can prevent trauma from developing into a more substantial problem like PTSD.

The title of the study is “Risk Markers for Suicidality in Autistic Adults”, Cassidy et al. (2018), and it suggests two unique risk markers for suicidality among autistic people: camouflaging and unmet needs.

Camouflaging is a coping skill used when socializing.  Autistic people modify their behavior during social interactions to ‘fit in’.  Camouflaging may not be as pressing a difficulty right now due to being quarantined away from people. While there may be some camouflaging during video calls /meetings, it has a set time with a beginning and end, doesn’t last too long, and is being done in the safety of home at this time of being quarantined. Thus, the cost of camouflaging may be lessened and self-care can be done immediately in the comfort of the home environment for most people.

Unmet needs, on the other hand, is a substantial difficulty for autistic people during this time.  There have been many immediate, unexpected daily living changes leading to needs being unmet.  For autistic parents, children are home and suddenly needing to be homeschooled.  In the work environment; the place, time, and even type of work may have changed.  For advocates; speaking engagements, conferences, and trainings have been cancelled or postponed. The changes have also resulted in either a lack of, cancelled, or changed support system. As well, there are certain items that help keep autistic people regulated such as food, drinks, and activities that are not currently easily accessible.

Autistic people living independently, who struggle with executive functioning, have suddenly found that the way they are used to taking care of themselves, their homes, financial responsibilities, and other daily tasks have all unexpectedly changed.  There is no longer a meaningful schedule to follow and very little energy to produce a new one quickly. All of this leads to even higher anxiety and confusion, often on a minute-by-minute, situation-by-situation basis.

Unmet needs is a unique risk marker of suicidality for autistic people that must be taken seriously at this time.  Due to high anxiety, executive functioning struggles, an inherent aversion to change, and less support, autistic people are even more vulnerable right now.  Many autistic people may not even realize how much they are struggling because of either disassociating (a coping mechanism) or alexithymia (the inability to identify or explain emotions).  This combination of unmet needs and not realizing how overwhelmed a person may be is dangerous.

What can be done?

Armed with the knowledge of unmet needs being a unique risk marker of suicidality, autistic people can help themselves first through self-care and being more aware of changes in either their thoughts or physical bodies indicating strong emotions and anxiety.  In an effort to stay regulated, autistic people can try indulging in something they are passionate about, being kind to themselves, meditating to stay calm, and using individual coping skills.

Autistic people are creative and can use that strength to develop ways to meet their own needs or to guide others in helping them.  Try to be flexible.  Take care of and help yourself with the same passion you help others.

Autistic people can also stay in touch with their friends as much as possible.  Withdrawing might feel safe and comfortable when autistic people are overwhelmed, but it may also be the worst coping skill to utilize during these difficult times.  Try to avoid withdrawing, even if, as an autistic adult, you only interact with one, safe, trusted person. The important part is to keep interacting.

Second, friends and family of autistic people can try to be more aware of what your friend or loved one is experiencing and be supportive of their needs. Some examples are: helping them to make new schedules as soon as possible, encouraging adjustment to new routines, or finding alternatives to their preferred foods, drinks, or other needs.  Stay in touch with your autistic friend or family member and listen, really listen to them.  Reaching out for help is a social skill.  During times of high anxiety and dysregulation, skills previously mastered can regress.  Remember, above all, kindness matters.

Thirdly, to professionals of autistic people: try to keep up the same level of support or more if possible.  Investigate any changes in their thought patterns, speech, or lack thereof.  Ask direct questions instead of politely beating around the bush.  Now is not the time for pleasantries.  It’s the time to stay focused on what your client needs and to be receptive to what they are saying to you.  If an autistic person misses an appointment, do not assume they are ok and just forgetful.  While keeping within healthy professional boundaries, try to find out why an appointment was missed and if they are still ok.

In conclusion, research has shown unmet needs are a unique risk factor for suicidality in autistic people.  This difficult, uncertain time during the pandemic has produced immediate, unexpected changes in all areas of life for autistic people. There are many unmet needs.  Hopefully, autistic people themselves, their families and friends, along with the professionals in their lives can all work together to help navigate this time of change and unmet needs as safely as possible.

If feeling suicidal or just overwhelmed and need to talk to someone-

In the US call the National Suicide Prevention Lifeline at   1-800-273-8255

Or Text “GO” to 741741 – the 24/7 Suicide Hotline

Outside the US – go to www.suicide.org a website containing hotline call numbers for many countries around the world.  http://www.suicide.org/international-suicide-hotlines.html

Resource:

Sarah Cassidy, Louise Bradley, Rebecca Shaw, Simon Baron-Cohen Risk markers for suicidality in autistic adults Molecular Autism, Volume 9, Article 42, July 2018

The Carnival

When I was a kid I went to a carnival.  It was one of those small town carnivals celebrating summer with music, craft tables, the smell of fried food, and games to play for a stuffed animal.

This carnival had a cake walk.  It’s a game like musical chairs where people walk around an area until the music stops.  If you happened to stop in front of a cake, you got to keep it.  All the cakes were homemade and delicious!  But, I digress. It wasn’t a time for cake then as you will see as my story progresses.

So, I was taken to this carnival to have a good time, and I really, truly wanted to have fun.  For many people carnivals are happy places, and I’m sure they are if you enjoy loud music, lots of people, various smells mixed together, and the heightened, emotionally-fueled atmosphere.

I didn’t.

The whole carnival was too much for me.  As much as I really wanted to enjoy myself and fit in with the people who brought me –  in being excited to go, enjoying my time there, and then talking about the day all the way home – I just did not.

Here’s the kicker though – I tried.  I put a smile on my face (or so I thought).  I paid attention to the games, I walked for a cake, I tried to do what I saw everyone else doing.  I remember wanting the people who took me to be glad they took me.  I wanted – for once – to not ‘make waves’ nor be invisible.  It was difficult. I was making a huge effort to ‘be normal’, and I was actually happy with my success.

Until… I was taken aside by one of the people who brought me there.  The person looked down at me with an angry face and said, “We’ve taken the time and effort to bring you here, at the very least you could pretend you are having fun!”  Huh?  What?  That really threw me because I was doing exactly that!  I was pretending to have fun! (Obviously not as well as I thought.)

That moment was a turning point for me.  I had known I was different for a long time.  I still didn’t know why, but I knew in that moment that it was not something I was going to outgrow.  I realized whatever it was that made me different from other people was deep inside me and I was not going to be able to make it go away.  I was around 12 years old.

It would be 35 more years before I had a diagnosis.  Thirty-five years of not knowing why I was different. That’s a long time to build up defenses against bullying, harden my heart against loss, and to stop believing in myself..

But, that’s not what happened.  Somehow I made it through with an inner strength that has served me well, my heart intact – with a deep compassion for people- especially for the underdog – and accomplishing stuff that I find hard to believe.   (I’m pretty sure the Imposter Syndrome Monster lives under my bed.)

The best part of getting my diagnosis was finding my tribe.  Getting to know other people on the spectrum with the same inner strength, deep compassion, and resolve you only get by striving through hard situations.

In looking back and remembering how I felt as I looked up at the angry face of that person who had so completely misunderstood me and my intentions, I feel for that kid who was me.  It’s a healthy thing to do, as long as I don’t stay in that memory for too long I suppose.

I don’t know the end of the story yet, but that kid, and so many other kids like me who were undiagnosed in childhood, we are survivors!  So many of us were misunderstood, confused, different, alone, bullied, and had no idea why. It was tough.  We have our scars, we have our ‘carnival’ memories, but we also made it!

Now, it’s time for cake!

Today

My alarm goes off.  As my mind transitions from sleeping to waking up, I wonder what day it is.  Oh, yeah, it’s today.  It’s always today now.  There’s no schedule to discern one day from the next anymore.  It’s the spring of 2020 and the whole world changed just a couple of weeks ago.

Then, I start to remember.  This today is going to be a great day!  Things are really going to get exciting!  I had decided the night before to shake things up a bit and have my coffee in the living room by the window instead of at the kitchen table.  I hurry to get up.  I wonder what I’ll see!  Maybe a bird or a squirrel if I’m lucky.  If not, that’s ok, there are trees outside my window and I can see the road.

After that, I’m going to have my breakfast before I shower.  I chuckle to myself at how creative I am today.  Now, I don’t want to brag or anything, but I’m also going to listen to music while I have breakfast instead of reading the news.  Yes!  I’m getting wild and crazy!

Now, rush hour is about to begin.  Soon, there will be three people awake in the house instead of just me.  I have it all planned out though.  I take a deep breath and get ready for the crowd.  My boys greet me as they wander out of their rooms.  I greet them back and we exchange pleasantries about all that’s happened since we saw each other last.

“I slept pretty good,” said one son.

“I slept ok,” said the other.

The riveting conversation suddenly veers off into a new direction as they ask what’s for breakfast.  Oh! I can hardly keep up!  I think to myself how lucky I am to have sons who know how to keep a conversation from lagging.

They don’t know it yet, but I have a surprise for them!  I tell them to sit down as I explain the twist to their day.  The son who had school in the living room yesterday is going to move to the kitchen today and visa versa.  They don’t know how to take the news at first, but soon warm up to the idea.  They laugh as they see the humor of the situation and my cleverness at ensuring their lives stay fresh and exciting as one day melts into the next.

After school I have more plot twists to our day.  Instead of the boys playing video games while I work, today we are all… drum roll please – playing board games!

Ok, well, that was fun.

I try to see the humor wherever I can and not take life too seriously.  Unfortunately, life is pretty serious right now though.  There are lives at stake and it’s important for everyone to do their part.

While I appreciate, think about, and pray for all the nurses, doctors, first responders, retail employees, delivery people, and many others who are part of the skeleton crew keeping the world limping along… I accept that my family must do their part as well.

We have a very important job.

The part we play in the fight against Covid-19 requires long hours, is somewhat tedious, yet is very important.

We. Stay. Home.

Yes, that’s what we do.  We stay home, get bored, and find the weirdest things amusing after a while.  Please, if you’re not one of the skeleton crew keeping our world limping along… stay home too.  We’re all in this together.

I Didn’t Know Back Then

Being born autistic in the 60’s put my life on a trajectory of unknowns. Although there were hints about the way my brain was wired – they were misunderstood back then.  People couldn’t figure me out. I couldn’t figure me out. The comments I heard the most were: ‘you are so quiet’, ‘you are too sensitive’, ‘you should try to make friends’, and ‘can I copy your homework?’.

‘You are so quiet.’  I’ve heard this statement so much throughout my life I could scream, but that would be uncharacteristic – wouldn’t it?  One of the great mysteries of my life is why so many people thought they needed to tell me I was quiet.  Yep, I already knew, thanks!  It’s not that I didn’t have anything to say – I did.  I was just waiting for interesting, meaningful conversation.  Small talk did not appeal to me in the least.  I never understood talking just to talk, so I didn’t join in.  Was I the arrogant, snobby, aloof person everyone thought I was? Or, was this quirk of mine an indication of a social communication disorder to be diagnosed decades in the future? I didn’t know back then.

“You are too sensitive.”  Yes!  I was.  I had no idea I experienced the world differently than my peers.  I thought everyone heard the same intensity of sound, felt the same aversion to touch, was repulsed by certain textures of food, and/or had an extraordinary sense of smell.  Were these hyper-sensitivities the result of a finicky, picky, bratty kid?  Or were they clues to a sensory disorder to be diagnosed decades in the future? I didn’t know back then.

“You should try to make friends.”  Ya think?   I felt like retorting – “You should try to fly.” I didn’t see anyone else asking the impossible of others. I had absolutely no clue how to make a friend. How to fit in. I was missing something. I was different. Odd. An outcast who felt she had somehow been born in the wrong century or millennium or dimension.  Was this struggle evidence of something inherently wrong with me? Or possibility a differently-wired brain to be understood only after decades of research and awareness?  I didn’t know back then.

“Can I copy your homework?”  It’s really the only time the other kids talked to me.  Yes, you can copy my homework.  A connection?  No. One of the skills I did have – to learn information – was being exploited by my peers.  Not celebrated.  Not accepted.  Exploited. I could at least pretend in the moment that I was a part of the class.  Then, after copying my homework, I was ignored until they needed me again.  Was this evidence that I could somehow fit in, even if it was just to share my homework? Or was I always going to be marching to the beat of a different drummer?  An unknown drummer that might actually have a name.  I didn’t know back then.

Life went on like that until – four decades, seven years, and 6 months went by (ironically in the same month of my birth) I got some answers.  I was given a name – Asperger’s Syndrome. At long last I met the drummer whose beat I had always marched to.  Yes, I was quiet, I was sensitive, I did have trouble fitting in, and I was gifted with a bright intellect.  I was an Aspie!  Cool.  Now, I do know.

The Power of Acceptance

I got a homemade gift the other day. It’s absolutely incredible in so many ways. The gift itself is beautiful, the person who made it even more so.  There are many layers of meaning within the gift; I’m still processing it days later.

I want to share one meaning because it shows the power of acceptance.

The gift is a stunning stained glass picture of an elegant flower sitting atop a strong stem with various swirling leaves.

It is important to note that, as the colors were chosen with care, there were colors not chosen with just as much, if not more, deliberate care as a way of showing her acceptance of me.

The frame of the picture is a vibrant, brilliant, purple. A stunning red flower stands out bright and elegant. That strong stem and those swirling leaves were left colorless – on purpose.

My gift has no green where green usually goes. The colorless parts of this gift speak volumes to me.  I can’t look at them or think about them without being moved to tears. There are lots of good emotions in those tears.  I can’t name them all, but I feel all the feels.

I received acceptance of my aversion to green like I’ve never experienced before.  You see, green is not just a color to me, green stands for every hurtful, broken, unkind, abusive, rejective, and simply horrible thing that has ever happened to me in my life as an autistic person.

Any person looking at that stained glass picture might think there had been a mistake. They might think there’s something missing and pass it over as unfinished and lacking. They might think it’s not good enough and reject it. Just like people have done to me my whole life.

My thoughtful friend put clear, fresh, uncolored glass in my gift, which stands as a powerful symbol to me of starting over with new experiences and leaving the ‘green’ of my life behind.  The achromatic stem and leaves are visual representations to me that letting go of the ‘green’ to choose a brand new ‘color’ will be a beautiful thing. Her acceptance and support will help me find that new color.

My friend, as she willingly took the chance of being judged unfairly in coloring the stem and leaves ‘wrong’ (possibly enduring some “greenness” herself) has visually and tangibly shown her acceptance of who I am – it’s a gift within a gift.

Overcoming PTSD with ASD

PTSD is a harsh, stern, taskmaster.  Triggers are everywhere. They can even come in safe places and through a person you trust.  Those are the difficult ones because, if the trigger was very unpleasant, going back to that same safe place or person for help – does not feel safe.

Living with ASD keeps the traumatic reliving of memories all close and fresh so to speak.  For many, our autism keeps the triggered memories alive through rumination of thought; keeps them graphic through visual thinking and lucid nightmares, and keeps us alone through withdrawing to cope.

With PTSD there’s a Groundhog Day feeling of reliving a traumatic experience over and over again with no way out.  Enduring the triggers of PTSD can use up way too many spoons, which leads to exhaustion and the possibility of giving in and letting go of hope that things will get better.

The other day I saw a man I hadn’t seen in three weeks.  When I last saw him, he was just starting to grow a beard, and during the time I hadn’t seen him his beard had grown substantially.  At my first glance of his beard, my stomach reacted, but my mind didn’t just yet.  I had no idea why I had any reaction at all.  He’s a nice man, helpful to my son, and I’ve known him for a couple of years.  It wasn’t until some time had gone by, and he made a certain mannerism, that I realized his new beard caused him to look quite similar to my deceased husband.

Then, I uncomfortably physically reacted with more than just my queasy stomach.  I was triggered.  The problem was my ASD characteristics (in this particular instance, alexithymia) slowed down my understanding of what was happening because although I was anxious, and in fight or flight mode, I didn’t feel any emotions just yet.

As the day wore on, my panic grew, my anxiety kept going up, and I was having uncomfortable physical symptoms such as: feeling like I couldn’t breathe, physically shaking, my throat constricted uncomfortably, my heart thumping wildly, and I had a sharp, knife-like pain in my chest where my emotions sit.  Still, I had no emotions that I could tie to my physical symptoms.  I knew from experience I had been triggered.  My brain had interpreted a man with a new beard as my deceased husband of whom I had great fear of when he was living.

So, what to do about that?  I try several things to alleviate the physical symptoms and essentially ‘talk my brain down’ from the heightened state of reliving a nightmare.  I keep busy. I take a quick, brisk walk.  Moving my big muscles can, at times, release some of my anxiety.  I try reading, writing, baking, listening to music or binge watch Netflix.

If none of those works, I might go to the seashore and listen to the waves or walk in the forest near my home.  If none of that works I reach out to someone I trust to simply listen.  It helps to have someone listen.  Lastly, I try to fall asleep, even if it’s just a nap.  This can sometimes backfire due to PTSD nightmares, but it’s always worth a shot to rest and try again tomorrow.  If a nightmare does happen, I start the coping strategies all over again.

Autistic people are vulnerable to developing PTSD due to long term bullying, traumatic experiences, relational rejection, and many other adverse life experiences.  While our autistic characteristics can keep us prisoners of PTSD, our characteristics can also set us free. As autistic people, we have the resilience, inner strength, and perseverance of overcoming adversity that we can use to subdue one trigger at a time in our journeys towards health and healing from PTSD.  So yes, PTSD is a harsh, stern taskmaster and we are vulnerable to developing it, but we also have autistic strengths to use in combating it and reclaiming the quality of life we deserve.

A Silver Lining…

Trigger Warning

***This is an article on suicide prevention.***

In honor of September being National Suicide Prevention month, I thought I’d dedicate this column to issues of suicide in the autism community.  While I do understand suicide is not a welcome topic, I believe that is one of the reasons it is such a problem.  No one wants to talk about it.  Although, I believe if we did talk about it more, people wouldn’t feel like they have to keep their feelings a secret and there’s a better chance they will reach out for help.

Another unwelcome topic, at least for me, is statistics, but it helps to understand the gravity of the situation.  Wait!  Keep reading, I will go easy on the statistics, I promise.

First statistic – suicidal thoughts and behaviors are significantly higher (66%) in autistic adults than in the general public (17%).  We need to find out why!

Second statistic – a diagnosis of ASD (autism spectrum disorder) or having autistic traits are risk factors in suicidality.  Ok…but why?

Third and final statistic – unique risk factors in the autism community are camouflaging and unmet needs.   Oh, that’s why.  Or at least two reasons why.

With the statistics over and done with, what do we do with them?

First, we recognize the magnitude of the situation.  Suicide is the second leading cause of premature death in the autism community. It’s like a killer in our midst that no one wants to talk about, instead of meeting it head on. Think about the ‘elephant in the room’- as soon as someone addresses that elusive elephant, it goes away.  I’m not saying if we just talk about suicide it will cease being a problem, but I do believe talking openly and honestly about suicide and/or feeling suicidal will be a great first step in solving the problem.

Research has shown people are at a higher risk of suicide just by being autistic or having autistic traits.  Thankfully, the research went one step further and identified two risk factors that are, at times, a result of autism.  They are camouflaging and unmet needs.

I am going to say that both of those risk factors have one thing in common – unacceptance.  I believe the key to begin the journey to health and healing for many of us on the spectrum is being accepted by society for who we are and for society to accept that our needs are what we say they are- no questions asked and no comparing us to non autistic people.

The silver lining… we now have a practical research study that has given us information to help ourselves if we experience feelings of hopelessness leading to suicide.  Information we can take and be proactive towards changing so we may not even get to that place of hopelessness. Knowing that camouflaging and unmet needs are the unique risk factors for us, we can work towards being our true selves and building a support network.

We have the right to be who we are, all the time, wherever we are, without rejection, bullying, and/or the brunt of preconceived notions of autism.  No one is going to give it to us, we have to just live it the best we can.  We are awesome people!  Let’s take on the mindset that if we are not accepted, it’s not a reflection on us; it just means the rejectors will miss out on knowing some pretty amazing people. Poor them.

Building support for unmet needs can get complicated because it involves people.  It is still possible even if it takes going to different places for help until the right one is found for any particular person.  Also, online support is support. It is solid support that we may not be able to find in real life.  This September, during National Suicide Prevention month, as a person who struggles with issues of suicide, I am hopeful about the research that has given useful information.  It’s a great silver lining…

If feeling suicidal-

In the US call the National Suicide Prevention Lifeline at   1-800-273-8255

Or Text “GO” to 741741 – the 24/7 Suicide Hotline

Outside the US – go to http://www.suicide.org a website containing hotline call numbers for many countries around the world.  http://www.suicide.org/international-suicide-hotlines.html

Resource:

Sarah Cassidy, Louise Bradley, Rebecca Shaw, Simon Baron-Cohen Risk markers for suicidality in autistic adults Molecular Autism, Volume 9, Article 42, July 2018

Defining Success

I have never really known how to define success.  For me, it has always seemed connected to how I’m feeling and subjective to circumstances. Along with being diagnosed as autistic later in life, come holes in my general knowledge of life.  Ideas and concepts I probably would have learned if I was included in the social life of school and society while growing up. I’m gradually filling in the holes of my knowledge, such as defining success.

For example… the other day, a program manager came to my home to introduce a new support person to help a family member.  While getting to know each other, I decided to tell the support person I was autistic.  I made the decision to share my diagnosis with him because I wanted us to be able to sustain effective communication.  I asked for no hinting, no social nuances, and for our communication to be open and honest- blatantly honest.  The program manager leaned in his direction told him, “It will be ok, she has letters after her name and is really smart.”  Then she followed that up with, “we’ll talk about it (me?) later.”  I was done.  That meeting was over.  According to the program manager, I was a successful autistic person because I had ‘letters after my name’ and I was ‘really smart’.  I defined my success in closing down the meeting after being insulted.

Right before that I had a business phone call with a few people who knew I was autistic.  I was not included in most of the conversation.  When I spoke I was articulate (not something that happens all the time for me) and explained some misconceptions about autistic people.  I could tell when the conversation started again, that my words didn’t have the weight of the other two non-autistic people. What I said had been essentially dismissed.  There was a stigma about autistic people that got in the way of my advocating for autistic people.  Here, I defined my success in speaking up while faced with assumed incompetence, and their own preconceived notions about autistic people.

When I have flashbacks from PTSD caused by the trauma of growing up autistic, I used to feel like a failure, just for having them, no matter how I was able to cope and regulate my emotions.  Flashbacks can be very abrupt and debilitating to the point where everything feels hopeless and I feel helpless.  I now define my success by my willingness to choose coping skills to help bring myself back to a state of peacefulness, even if it takes a while for them to work.

So, for me, I’ve learned success is defined by every battle fought and won in maintaining and celebrating my autistic self.  I used to think if I encountered, for example, insults, preconceived notions, and/or flashbacks from inflicted trauma in a short period of time, I was more of a failure in life than a success.  Now I understand success is defined more by winning the battles, not just in achieving the accomplishments – and getting letters after my name.

Laughter Means Something was Funny

‘Laughing all the way to the bank’… I tried it once, but only made it halfway.  My sides hurt, I was holding onto the steering wheel with one hand and wiping the tears of laughter out of my eyes with the other hand.  I’m lucky I even made it to the bank!

Ok, yes, I like to have fun with idioms sometimes.

I do have a point to this, I really do.  I was just reading an article* from a Scientific American (SA) blog called, “Autism: More than Meets the Eye”.  Haha!  I just pictured someone named ‘Morethan’ meeting someone named ‘theEye’ and wondered what that had to do with autism, but I digress.

So, back to the SA article, in which I found the answer to a mystery I’ve tried to solve for years.  I found out why a group of non-autistic people would all laugh together when I, honestly, did not hear anything funny.  I have never been able to understand why they all have a good laugh together when I can’t even come up with a grin. This group laughter has happened to me at day long trainings, conferences, and retreats.  Basically, a place where no one really knows each other, they are there for only a day or two sharing the event together.

Here’s the answer to the mystery according to the SA blog – the group laughter is a way they are socially bonding together.  In my experience it does not seem like the laughter was planned.  So, how do they all know when to do it at the same time?  Did these people learn how to do this as they grew up?  Do the older non-autistic people pass this knowledge down from one generation to the next through storytelling?  I know one thing for sure; I didn’t get an invitation to story time!

Now I understand a bit better why I stand out as awkward and am ostracized from the group for not joining in on the laughter (only because nothing was funny).  Could it really be that I essentially ‘told’ them I didn’t want to bond together with them as a group by not laughing?  Is this group laughter the ticket to belonging?  It has a very short window of time for me, I only experience it when I’m at organized events and it is lunch/ supper time.  I only go to events once or twice a year.

Who knew laughing meant more than expressing something funny?

There is another mystery that quickly follows the group laughter.  The group is getting ready to go get some lunch.  Knowing we’ve all just met, I watch to see how other people talk and get lunch companions.  To my dismay, people just seem to magically group into twos and threes and all head out the door without saying much.  No one extended an invitation to anyone else. How did anyone know who to group up with for lunch?  I’m left there alone, as usual.  Was I just supposed to go join them without talking about it first?  What if they all left as a group without me because I didn’t join in on the group laughter and they thought it was because I chose not to bond with them socially? All I did was choose not to laugh because – I didn’t hear anything funny!

The SA blog validated something I do as an autistic woman sometimes, which is to laugh out loud at my funny inner thoughts.  An autistic person laughing out loud alone within a group of non-autistic people may again indicate not wanting to bond socially.

I remember the title of the blog and start laughing out loud at my inner thoughts about Morethan meeting theEye – and I’m glad they all went to lunch, I didn’t want to send the wrong message.  I mean, honestly, sometimes laughter just means something was funny.

*I do not agree with most of the content of the SA blog post I refer to in my article, but as with everything, nothing is all good or all bad, so I took something I learned and left the rest.

https://blogs.scientificamerican.com/beautiful-minds/autism-more-than-meets-the-eye/

Fictional Reality

Warning : the following article contains a staggering amount of sarcasm, is predominantly fiction, while based completely on real events.  Nothing has been changed to protect the guilty.

To Whom It May Concern,

There is a toxic fiasco that needs to be addressed.  There are people all over the world suffering needlessly from a rampant malady affecting the minds of millions, called ‘Ignorance’, with a possible variant called ‘Disdain’.  Research has determined this fiasco is credible and undeniably harmful.  The symptoms are veiled, which makes it difficult to diagnose the carriers of the malady before innocent people get hurt.

Professionals of every field are being encouraged to keep an open mind and remain wary of the consequences of carriers going undiagnosed.   Word has it – unbelievably – the professionals themselves have a mindset that has been deleterious to the brave souls who venture out for their help, (ie. they are extremely susceptible to the malady).  The consequences are as follows:

First and foremost is the mindset that physical problems are the most important health aspects to be concerned about, cared for, and accepted.  The myth exacerbates the harmful conjecture that mental health isn’t even a ‘real’ thing.  An example: when a person, who knows their back spasms are due to stress and anxiety, goes to a doctor for help.  After explaining the back problems they live with everyday, in which the pain is positively correlated EVERY TIME with stress and anxiety, they are told it is just normal aging, are given a slip for physical therapy, and told to have a good day as the door closes on the doctor’s way out. Staring at the closed door, knowing they will remain in pain the patient has the added burden of just becoming the recipient of Ignorance.

Secondly, the misunderstanding by the ‘powers that be’  wherein the problems of bullying are solved if the teachers, bosses, health professionals, co-workers, friends, and family just look at the person ‘complaining’, tilt their head just a bit to the right, soften their voice, and say, “It’s ok, they really didn’t mean it”.  An example: a school age child who never has his lunch, always comes to class after recess looking extremely upset and roughed up, and is “accidentally” pushed around the classroom relentlessly.  The child, upon asking for help, is told, with the classic head tilt, “It’s ok, they really didn’t mean it” and therefore unjustly remains a casualty of Ignorance with no support or help.

A sad characteristic of the malady is not being able to discern who has it until someone gets hurt.  The sadder aspect is even after damage has been done to another, the malady remains unchecked because carriers do not see it in each other.  They all walk around as hosts of Ignorance and/or Disdain.

Our final example is taken from a unique group of neurodivergent people who identify as autistic.  These people are particularly susceptible to the carriers of Ignorance and/or Disdain.  The carriers come from all walks of life, professionals, friends, family, colleagues, and even strangers.

For a reason that hasn’t been determined yet, the carriers of the Ignorance malady, and it’s variant Disdain, are attracted to autistic people.  Research has shown autistic people are vulnerable to being abused, which is an aftereffect of the malady and its variant.  Some examples: an autistic person happily stimming is accosted by a person infected with Disdain and forced to stop.  A colleague sick with Ignorance manipulates their workload onto an autistic person, who wants to fit in so much they accept the extra work hoping it might lead to a friendship, only to discover they are just being exploited.  Another example is when an autistic person discloses their autism to Ignorance in trust and is immediately dismissed as lazy, noncompliant, and/or ‘just like everyone else’, meaning: ‘aren’t we all a little autistic’?

In conclusion, we all must heed the warning of this fiasco, and be aware of the dangers of Ignorance and Disdain.  One recent study has shown there are possible treatments that work if a carrier of the malady is caught before harm can befall the innocent people being harassed.  Treatments such as doses of Truth, Strength to stand firm, Self Advocacy, and Courage.  And, of course neither Ignorance nor Disdain can prevail against Community for long.  Together, let’s eradicate Ignorance and Disdain!

Regards,

Officer of the Department of Fiascos