Adult Autism, social networks and the ongoing struggle to fit in

This post has been stirring about in my brain for some time, but it’s more apropos in light of my recent disconnection from Facebook. Adult Autistics are a varied lot, so you have to throw any preconceived notions out the window. Not all Autistic adults are introverted, and most sincerely crave some sort of interaction with other people. We want to feel those connections. We want to feel accepted within a group, a clan, a family or a tribe. Sometimes we might feel like we’ve found that connection, only to realize that we feel out of place even amongst people like us. I can tell you this is true, for I live every day, perpetually reaching out into the world, yet the vast majority of the time feeling disconnected, or that my attempts to socialize are just lost in the aether.

I see online groups of people, clustered around their united interests, interacting in ways that appear so natural. I watch their posts flicker on my screen as I scroll and think perhaps I just need to learn how to imitate their wording, or their sentence structure. Or include emoticons. Or write about certain things and not other things. The amount of resources that goes into trying to establish such connections might be astounding. I am positive that during a polar vortex, that I could heat my house with the fanned flames of my most concerted efforts. I comment on things and my words look strange to me, and they feel sharp and uncomfortable, as I know my words are just symbols representing how hard I am trying to fit in.

I often feel like a solitary, floating island… sending out smoke signals and morse code mirror signs to ships passing on the distant horizon. I just can’t get through. I just can’t make real connections, and it doesn’t matter how hard I try, it just doesn’t happen. I’m always afraid of saying the wrong thing, posting the wrong link, following the wrong account, or inadvertently upsetting someone with my words. My written words are much better than my spoken words, for they have less likelihood to stutter and ramble, from tangent to tangent into a vortex of my own uncomfortable confusion.

This is why I prefer the company of dogs, I tell myself. This is why I like to sit and watch the baby cows play, I tell myself. This is why when my Son is grown and moves on in his life, I will be experiencing empty nest syndrome of pterodactyl proportions. This is why I will start to keep chickens, I tell myself. This is why I will have pygmy goats. This is why I want to learn to keep bees. So I am never without interaction, but absent of the forced vulnerability I feel so persistently with my fellow humans.

I’m not saying that all adult Autistic people are lonely, or that they are codependent in their craving for human interaction. We’re all vastly different, and even in our own differences, which can vary from day to day and year to year.

Some days I am fine with little to no interaction. I often joke with my Son and tell him that if I wasn’t his Mother, I would surely have signed up for a one-way mission to Mars and have been perfectly fine all on my own. But other days, I do want to interact with people. It doesn’t take much to fulfill this basic necessity. Unfortunately, most of the time I feel as if I fall short. And I’m left talking to myself, tweeting or posting into the void in between days.

Sometimes my attempts at socialization feel like a 6th grade science experiment, where you have iron filings and a strong magnet. Some days, I feel like the end of the magnet that pushes the iron filings away, lost in that inner void of force of the workings of nature. It’s physics. It’s a line that can’t be crossed. It just is.

Sometimes attempting interaction feels very uncomfortable, and even vulnerable. It’s a strange sort of anxious uneasiness, this forced interaction, this reaching out in hopes of connecting but knowing that more times than not, your attempts will be met with radio silence… it’s the post on Facebook you write, sitting and hoping that someone sees it and hits the like button, or makes a comment on it. It’s the blog post you write and share on Twitter, just wishing that it would be seen, or shared, or related to. It’s the post you make on reddit, scared of it getting down voted and moved off into the netherlands. It’s the daily outreaching tendrils of your psyche that you send outward into the world, searching for some sense of togetherness.

There’s only so far that observing the social intricacies of others goes. Scripting my interactions and conversations falls flat after a while. Why can’t we communicate with music, or pictures, I wonder? If words fall flat, perhaps I can share with you a Satie Gymnopedie, and you can respond back to me with a Chopin Etude. Perhaps?

This might be my shortest blog post on record. Either I am learning to be more succinct with my words, or there’s only so many ways you can write about mismatched social interaction, full of hope and good intention… and how this one thing just so happens to be one of my greatest challenges and frustrations as an Autistic woman. I’m going to share this post now, sending it forth into binary land, where it will then land on Twitter. And I will sit, watching it’s static existence, wondering if my words will connect on any of the numerous possible levels. We neurodivergent folk differ from one another in just as many ways as we differ from neurotypicals, but through it all, we are very much the same in one crucial way. We all want to connect.

 

 

Autism ≠ Developmental Delay

Sonnolenta:

Another beautiful blog post from Emma and Ariane. A MUST-READ for parents of Autistic children, especially any parent whose child has been recently diagnosed!

“There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!”

Originally posted on Emma's Hope Book:

There were few things that led us more astray than the idea of autism being a developmental delay.  Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan.  (This post is not about Stanley Greenspan or his method.  His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal.  The private hell of regret is a cruel place to linger.  Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.”   In typical Emma-fashion she generously and compassionately reminded me that it was not…

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Stand-up Paddleboard (SUP) on Tugalo Lake (Georgia/South Carolina)

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On June 19, 2014, we loaded our Tower inflatable SUPs into the car and set out for Tugalo Lake. This lake is awesome because it’s completely isolated, and has no development on it. When we SUP, we always choose a day during the week, and try to go places that have little boat traffic. In other words, as little sensory onslaught as possible is the name of the game. There’s nothing worse than being an Autistic person on a paddle board and having screaming jet skis cutting perilously close to you while their drivers laugh and yell as if it is some fun game for them. That’s happened.

Tugalo means “forked waters” in Cherokee, and it forms part of the natural border between GA and SC, lying partially within both states starting at the confluence of the Chattooga River and the Tallulah River. There’s only two ways to get to it- one road in Georgia which is so steep it requires 4WD, and another road in South Carolina which is way, way off the beaten path, steep, and unpaved. We chose the SC route.

“Arguably the most scenic lake in Georgia South Carolina, 597-acre Lake Tugalo is also one of the most remote. The incredible beauty of 1,000-foot walls rising straight up from the water’s edge and the possibility of truly trophy-sized largemouth bass make Lake Tugalo an interesting trip indeed. Georgia Power’s 155-foot high Tugalo Dam forms Lake Tugalo on the Tugaloo River. Oddly, the spelling of the river differs from the spelling of the lake and dam. In the Cherokee language “Tugalo” means “fork of a stream.” The dam is just downstream of where the Tallulah and Chattooga rivers join to form the Tugaloo River. Since it is so remote and nearly inaccessible, Tugalo does not receive heavy fishing pressure. What access points there are require a steep and winding drive on unpaved roads. Kayakers and whitewater rafters use the access point on the South Carolina side as a take-out after braving the class V rapids of the Chattooga River upstream of the lake.” (source: Trails.com)

The day we were there, we saw only two kayakers, who had been camping on the Georgia side, and two fishermen. When they say this lake is isolated, they’re not exaggerating! At certain times, I was worried that my little Mini Cooper was not at all well-suited for the drive. When we parked, she was covered completely with a thick layer of sparkly granite-based road dust. The SC boat ramp area is paved and has plenty of parking, a bathroom, a docking area, as well as large stepped concrete platforms going into the water. There was a family playing in the water on these steps when we kicked off.

We paddled from the SC boat ramp down to the Tugalo dam, then up the Tallulah River fork, towards the Tallulah gorges and the power station. The power station itself is a beautiful red brick building, nestled deep within two mountain gorges. We got close to it, but not so close that a scheduled water discharge from the station could be harmful. The power station was built in the early 1900′s as part of a major Georgia Power project, consisting of the creation of several dammed lakes with hydroelectric power generation. Some interesting history about the Tallulah Gorges area, here.

As we paddled into the Tallulah Gorges arm, we started hearing distant voices in the forest around us. We couldn’t hear what they were saying, and it was very eerie! Then we heard a dog whining. We stopped talking and stood still, waiting to see if we heard the sounds again. Nothing. Just the soft sounds of water lapping on our boards, and birds whistling and chirping. We began talking again, and there it was- we heard the voices again! I shouted out “HELLO!” and I heard someone else shout back “HELLO!”. After doing this a few times, I realized that the voices we were hearing were OUR voices. We were in a deep gorge with rock walls and our voices were echoing. Soon our dog Stella realized this too, and she spent most of the time in the gorge howling with delight and curiosity as she heard the ghost dog howl back.

A lot of people giggle when they see Stella wearing her bright orange doggie life preserver. They don’t seem to understand why a dog should be wearing such a device, but when you’re paddle boarding, it’s very important! Dogs like to jump off the paddle board, and it’s very difficult to get them back on. Stella’s life vest has a handle on it, so I can easily pull her back up on to the board. I’ve been knocked off my board before, whether by a rude boater, or just losing my balance, and when this happens, it’s always a shock to the system. And probably Stella’s, too. Having her in a life vest provides me with an additional flotation device, and a dog will always swim toward the shore, so I can hold on to her until I get my bearings, and am able to get back onto the board. In case you were wondering, yes- I ALWAYS wear a life vest when paddle boarding. A lot of people don’t, but the one time I didn’t wear one, I had a scary experience with some teen girls on jet skis and I almost lost my paddle (they don’t float), lost all bearings, couldn’t get back on my board, and got water up my nose and in my lungs. It was very frightening, so lesson learned- always wear a life vest!

We found a few small waterfalls along the way, and we stopped to have a snack and go for a swim. While I love swimming while I SUP, it’s always exceedingly difficult to get back up on the board when I’ve either fallen or jumped off. Our SUPS are inflatable, so they are thicker than regular rigid SUPS. This makes it difficult to get back on once you’re off. My Son told me that I looked like a sad manatee trying to get back on my board. :)

Directions to the SC boat ramp can be found here, if you’re interested in experiencing this lake for yourself! We will definitely return next season.

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We Need to Talk about Mental Health and Suicide. Now.

[Content Warning: Discusison of suicide, mental health stigmatization, possibly disturbing text description]

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This might be the last thing my Father saw before he died. This is the tree above where he was sitting when he took his own life.

 

Life was forever changed on December 20, 2008. It was the day that my Father committed suicide. His attempt wasn’t a cry for help, it was a carefully placed hollow point bullet from the barrel of his own gun. He had just undergone surgery to remove a cancerous growth from his colon five days earlier. The surgery was successful and his prognosis was excellent. There was no note, only a stack of photos that it is believed he had viewed and then purposefully left before leaving the house and yard he shared with my Mother, and sitting down on a bench under a tree, in the cul-de-sac immediately outside their home. The coroner told us he died instantly.

My Aunt wrote a hasty obituary for him, that revealed next to nothing about him as a person. It ran in the local paper, and there’s not a single trace of it to be found online. The next day, my Mother cleaned out his every belonging from the house and either threw it away, or sent it to the Goodwill.  There was no funeral or memorial service. His body was cremated, and the black plastic container holding his ashes was stuffed into a closet shelf in the room he had used as an office. Not a single photo of him appeared in the house from that day onward. My Mother took them all down. My Mother was angry, my Brother was angry. They both felt, and stated- that he was a selfish asshole. They wanted to know why, and were frustrated and annoyed that there seemed to be no answer  to their questions. Neither my Mother nor my Brother had ever experienced depression in their lives. They simply could not fathom why someone would take their own life.

My Mother made his suicide all about her. Her anger, her frustration, her shame. And shame is the key word of this post, because she was truly and totally ashamed of what my Father had done. Along with suicide comes shame. The person who took their life suddenly becomes a coward. Or someone who took the “easy way out”. Some religions teach that suicides go to hell, and that their souls are forever lost. Suicides are given all sorts of treatments in literature, for example- in Dante’s Inferno, those who commit suicide end up in the seventh circle of Hell, where their bodies are transformed into trees where they are eternally tortured and pecked upon by Harpies. Society, religion, literature, culture, music and art are all part of the stigma. History is rife with a long history of the stigma that resides with mental illness and suicide. As someone who was always preoccupied with the opinions of others, my Mother didn’t want anyone to know that her husband had killed himself. Surely it would reflect negatively on her as a person. She decided that we would all tell the world that he had died of cancer. After all, he had just had surgery for cancer, so technically, he had cancer, right? That’s what the story would be. Cancer.

He had no loose ends, no work relationships, no friendships. So no one ever needed to know. No one would know, right? We just all had to pretend. Because his mental health was such an embarrassment. What he did was such a black mark on the family name, right? This would all have been fine except for the fact that I felt that people did need to know. I didn’t feel that people should be ashamed of what he did, or that fact that he had been battling depression on and off for years, yet always feeling like he couldn’t take antidepressants or attend therapy- only weak people did that. The stigmatization of mental health issues ran deep with my Father. It prevented him from feeling like he could openly receive the help he needed. He might still be here if openly discussing mental illness wasn’t the huge pink elephant in the room. As someone like him, who had inherited his predisposition for depression and anxiety, I understood what he was going through. I even understood how he came to his decision to leave, as I had myself been hospitalized for severe depression and a suicide attempt when I was sixteen. So I wasn’t ashamed of him, and I felt the need to be honest about my Father’s passing.

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Me and my Dad, in 1997.

 

I tried to continue along at work, but I soon realized that I needed to take some time off. At first, I let my customers know that my Father had died, and that he had cancer. I did a fundraiser thing for the American Cancer Society in his honor, through Ebay. But then my emotions and sense of what was right got the best of me, and my frustration over having his mental health stigmatized upset me further. I finally came clean about how he had died, and told my customers I needed to take some time off to grieve and process all that had happened. Most people were very wonderful and kind, but others I sensed that they felt I was lying about his death to garner sympathy. I was correct in that hunch, for about 18 months after his death and the subsequent downward spiral of my own depression and inability to function properly at work on numerous levels, a group of former customers started a hate website against me. It was called “Rant 4 the Ugly” and their mission was essentially, to take both me and my business down. At one point, they devoted a whole thread to discussing my “fake story” about my Father’s demise for attention, as well as examining my inability to comprehend “normal” social boundaries, and how my behavior had become “bizarre”. Your behavior would be bizarre too, if you were a depressed undiagnosed Autistic woman, dealing with severe anxiety and insomnia, in an abusive relationship, with unsupportive family and massive career stress, trust me! (Screen capture thanks to a friend who was looking out for my best interests during that difficult time).

But the story wasn’t fake.  I wasn’t lying. Here’s my Father’s death certificate. I have blurred out my Mother’s name and addresses for her own safety and privacy, but here it is, clear as day… and I’m not ashamed of what it says. Our society has such deeply ingrained stigmatization of mental illness and suicide that it was deemed improbable that I was telling the truth about my Father’s death. That’s how pathetic we are as a society in relation to this monumental problem. Because, you know, the only way that someone would admit something like that? Is if they were fucked in the head, like these women wrote that I was. God/Goddess forbid that I was actually telling the truth not for sympathy, but because it was the truth, and I have always been outspoken about social justice issues, even in my work. And what human being going through monumentally traumatic life changes doesn’t want or need for a little bit of sympathy? My family treated me like garbage, and my husband regularly abused me. I had no one to turn to, yet I was a horrible person for reaching out to the only people I thought I had? Apparently, and that’s pathetic for a person to be attacked for that. I’m not ashamed of my Father, and my only lie about his death was in not fully describing his cause of death in the first place, but rather, chalking it up to what my Mother’s wishes were- that he had died suddenly of cancer. But you can see it right there- “Self inflicted gunshot wound to head. Massive blast injury to brain. With destruction”. The truth. The fact that almost six years after his death I still feel I have to justify how I reacted to it and grieved reveals volumes about our societal stigmatization of mental illness.

We hear about how suicide forever impacts the lives of those who are left behind, and that suicide is selfish. We read about how survivor’s lives are spent forever questioning why their loved one left, and how much pain it has caused them. But I want to stop and ask you to consider the extremes of pain that your loved one was in, if you have lost someone to suicide. I want you to consider that they hurt more in those last moments than you may ever be able to conceive hurting. And that regardless of whether they would or wouldn’t have been able to recover from their severe depression, they made the decision to end their lives- usually after a long dance with mental illness.

My Father made a huge decision, to end his life- forever. He appears to have researched it to a great extent to make sure that his attempt would work, right down to type of gun and bullets used, and placement of the shot. This was not a snap decision on his part. While I wish my Father was still alive, and I mourn his loss every single day, I respect his decision to end his life. I feel that what he did was one of the bravest things he ever did. I don’t feel that it was selfish. I respect that he had been battling with depression and anxiety for a long time, and that he felt that it was the right time and the right place. He even went so far as to end his life outdoors, on public property- so as not to harm the value of the house he and my Mother owned. That’s not the action of someone who is insane, that’s planning ahead.

I have wanted to write about how Robin Williams’ suicide affected me, for a while. In truth, his suicide was very triggering for me because I feel that my Father always slightly favored Robin Williams, and when he was being silly or joking around, he reminded me of him. This might sound strange, but I enjoyed Robin William’s films much more simply because he reminded me of my own Dad. You’d have to have known my Dad personally to “get it”, but here’s a picture of us, when I was about 8 months old. I still see pictures of Robin Williams in my news feeds on a daily basis. His portrait is still appearing on magazines as I stand in line at the grocery. Even seeing the words “Robin Williams” reminds me of my Father, who was “Robert William”. Thoughts of my Father are more prevalent than ever in my life, not that a day goes by without thinking of him, but it’s felt more painful of late. It ebbs and flows.

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Robin William’s death was certainly a great loss, and much effort has been made to try to understand why he took his own life. When someone famous such as him commits suicide, we as a culture react in a way that reveals just how much we stigmatize mental health issues. Because he touched so many lives, his death opened wide a torrent of articles exposing the stigma of mental health issues. Here’s an example of one such article, from the Huffington Post: Robin Williams, Connectedness and the Need to End the Stigma Around Mental Illness

Articles such as that present so much data about suicide rates and their growth, but they do little to actually change the situation. Sure, people start talking about it, but next thing you know, the next celebrity drama erupts and their attention is turned away. It’s sad, but true. We see this every day on social media, where ground-breaking scientific achievements barely trend, whilst the most insipid celebrity fame stories trend for days. Such is our world.

I think it’s important to start discussing mental health issues such as depression, at home. For instance, my Son is twelve, and he knows how his Grandpa died. He also knows that I have battled depression for most of my life, that I’ve taken various medications, and that I was hospitalized. I am not ashamed for him to know these things about me, nor should I be. They are part of who I am, and the person I’ve become. There is surely a genetic component at work, as my Father and I were always so alike, and we both suffered from depression. It’s not worth it to try to cover up these family issues and bury them, as if they don’t exist. As a loving parent, it’s my important task to teach my Son about his family history, and enable him with knowledge about the symptoms of depression, what depressive thought processes are like, and how depression can affect every aspect of one’s life.

I was about fourteen when I first became depressed. I was severely depressed for two years before I acted on the suicidal ideation I was experiencing. No one recognized that I was severely depressed, I assume they just thought I was being a “teenager”. My teachers didn’t notice. The guidance counselor at school didn’t notice. My friends didn’t notice. NO ONE NOTICED. I have no idea how not a single person noticed anything amiss, because I had to have been flashing warning signals all over the place. But that’s my point. No one noticed. I notice the slightest change in my son’s body language, tone of voice, sleep patterns, social behavior, or demeanor. I don’t just brush these things off to chance, I always ask him if he’s alright. He knows that it’s important to talk about your feelings, and we talk about his often. I’ve told him how depression feels, and how it changes how you think. Depression is an illness, just like catching the cold or flu. It might appear invisible to others, but it feels anything but invisible to the person suffering from it.

We can’t change overnight an entire society’s perception and how they deal with mental illness, but we can do it gradually with education and awareness. They say that children are too young to be told about these sort of things, but then we read about alarming statistics of grade school children attempting suicide or succeeding. “Almost 40% of kids attempting suicide make their first try in middle or even elementary school, according to research that suggests that kids who think they want to kill themselves are considering it long before previously assumed. About 1 in 9 children have attempted suicide before their high school graduation, but learning that they’re making plans as early as elementary school is especially chilling.” (source: TIME Magazine)

I am a survivor of my Father’s suicide, and that is often a very painful place to be. But I am certain that all of the collective pain I’ve felt and will feel- can’t hold a candle to the pain my Father was enduring. I am often conflicted with emotions as I selfishly wish he was still here, but then feel at ease in knowing he is now at peace, and all of the suffering he experienced in his life has ended.

I took my Son to see the movie Interstellar last week, and spent a lot of the movie choked up in tears, feeling that swollen, scratchy pain you get in your throat when you just want to melt into giant, choking sobs. It wasn’t the movie that made me feel that way- it was a certain one of my favorite poems by Dylan Thomas, which made it’s way into the film, metaphorically related to the struggles inherent to not just the characters themselves, but also, humanity. That poem is “Do not go gentle into that good night”, and it’s a poem I’ve read many times since my Father’s death. I can recite it from memory, and it will follow me every day of my life and into my own old age, which I hope to be long, fruitful and full of joy. I leave you with that poem:

 Do not go gentle into that good night
Dylan Thomas

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Isaqueena Falls/Stumphouse Mountain Train Tunnel, Walhalla SC (3/15/14)

I photograph just about every hike we go on, and I have so many of them I have never shared! If you’re not interested in hiking, feel free to browse my many other autism-related posts. I like to share our hiking excursions because they’re a big part of our life, our process, and our journey. Being close to nature and getting out into the fresh air is a large part of who we are.

This adventure was on March 15, 2014. We drove just up the road to visit Stumphouse Mountain Tunnnel, and also Isaqueena Falls. This area has lots of places to picnic and is managed by the town of Walhalla. There is a pay envelope area and it cost us $2 to get in.

Stumphouse Mountain Tunnel is really eerie, and a very fun experience to visit. It’s much larger than you expect, and you can feel and smell the dampness as you walk through pitch blackness, deep into the mountainside. The tinkling sound of dripping water accompanies you the entire time. Warning- it can get a little creepy, too. The tunnel was built with hands and black powder explosive, but never completed because of the Civil War. Many Irish workers lost their lives during it’s construction, giving way to legends of ghosts and graveyard lore. C enjoyed scaling the rock wall next to the tunnel exterior, like a little mountain goat, then we explored some old train cars that were left there when the project was abandoned. One of the train cars had “Robert”, which is my Father’s name- spray painted on it. I miss him every day and sometimes wonder just how often the universe is speaking to me…

Isaqueena Falls is a lovely 200 foot waterfall, which you can view from the platform, or hike down a rugged trail to it’s base. I skipped the trail, as this was a few days after we moved, and my back and body were screaming in pain. Legend is that the falls is named for the Cherokee Indian maiden, Isaqueena, who rode to the nearby fort to warn of a pending Indian attack and then escaped pursuing Indians by pretending to leap over the falls, but actually hiding beneath them.

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Truth and Compass: Universality and Difference Inside and Outside of Autism

Sonnolenta:

This is a wonderful post. It speaks powerful words about the reality of our Autistic children. Autistic children grow up to become Autistic adults. Shouldn’t we be teaching them total self love, respect and honor of their neurodivergent selves? Yes, we should. This is the greatest blessing we can give them.

Originally posted on Ray Hemachandra @ Golden Moon Publishing:

Nicholas Hemachandra at the base of Rainbow Falls, South Carolina, yesterday.

My son, Nicholas Hemachandra, at Rainbow Falls, South Carolina, yesterday

There’s this meme among some autism and special-needs parents and groups, shared on social-media graphics and bumper stickers, in fundraising activities and chat sites, that we parents are, essentially, the most wonderful people in the world: self-sacrificing saints chosen by God to raise these children — that we, if not our children, are very special, indeed.

Autism parents are just like everybody else, though. There’s no reason to think we’re not a perfectly randomized selection and cross-section of parents generally and people generally.

Which isn’t to say we aren’t special and precious and divine. We are — just like everybody else.

We’re also flawed. We struggle sometimes. Some of us are kind, and some of us aren’t. Some of us are selfless, and some of us are self-absorbed. Some of us are good parents, while some of us are poor parents…

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Disconnecting from Facebook: When spaces no longer feel safe

I deactivated my Facebook account last night, and felt a great wave of relief roll over me, tossing and turning me, then spitting me out on a distant shore. Or something like that.

Facebook has for a while been my main social outlet. I’m not ashamed to say it, I don’t regularly see any real-life friends. I’m a single Mother who works at home, home schools her child, and lives in a rural area. The only phone numbers on my contact list are my Sister (who lives 1500 miles away and who I’ve only met one time, over 20 years ago), the veterinarian, dentist, and doctor. I might interact with my neighbors on a casual basis, or be friendly with a clerk in a store, but other than that, Facebook has been my main social outlet for feeling connected to humanity.

Unfortunately, I’ve watched that degrade over the past year, as I’ve become autistically out. When I released two Autism Acceptance eyeshadows via my work earlier this year, my wee little Facebook friends list grew, as people in the Autism community wanted to be my friend. This made me feel like I was part of a larger group, and like I could voice my daily challenges, frustrations or difficulties within the context of others who might relate. You know, the very human act of venting and feeling supported.

At the same time, this brought non-autistic people on my friends list into the mix, who often would comment and make me feel stupid and petty for having said difficulties. I often felt like my safe space was being overrun by people trying to tone my content, or leave their opinion on what I should do. Here’s the thing: if I want opinions on how to do something, I’ll ask straight out. The worst thing autistic person me needs is non-autistic Facebook friend telling me what to do when all I want/need is the most basic human connection- “ditto” or “<3″ or “I get it”. I’ve had this happen over and over again in the recent few months and as a result, found myself feeling like when I post I have to exclude certain people, or even worse- not feel like I can post at all. On my own Facebook page.

Anyone’s Facebook friends list is surely a menagerie of personalities, and mine was no different. I had friends from all walks of life, all corners of the globe, and all variations of variation. Across all spans of political and religious beliefs. I’ve felt caught in between Scylla and Charybdis when it comes to this. Hands tied behind my back, to feel that I could not “like” or “share” certain things, lest worry I would offend or upset someone on my friends list. When your Facebook friends list is your only social outlet, you take these things seriously. If you think it’s pathetic that I don’t have real-life friends and that relying on Facebook for socialization is sad, then you probably shouldn’t be reading my blog. My blog is about the neurodivergent journey I am on, as a late-diagnosed Autistic woman who’s been through the ringer and back, estranged from her family and striving for peace and serenity. I spend each day putting all of my available resources towards my child, his homeschooling, running a small business that supports us, and caring for pets. There’s little left for socialization after that, but I clung to Facebook for this purpose like it was a survival raft. But that raft was toxic.

I’d regularly share photos on Facebook. It made me feel tenuously connected in a world where I often feel anxious and out of place. I went to college for photography, and spent twenty years paying off the student loans for that education, so I damn well better be able to take a pretty picture. But being able to take a pretty picture has it’s downfalls. People see your pictures and that’s all they see. Your life must be so easy. Your life looks like a vacation. You must poop rainbows and fairy sparkle dust in your perfectly nice looking prettily photographed life. As if photos are any indication of what someone’s life is really like, right? That’s one of my beefs with Facebook. People see what they want to see, and sometimes it’s just the gloss and finish. No one’s Facebook account photo timeline is accurately indicative of their daily life. No one’s.

Facebook also has an obsession with “family” and “if your Mother/Brother/Sister/Father is awesome, share this” sort of memes. That’s fantastic if you’ve been raised in a supportive family, but what if you haven’t? Facebook could be a constant reminder of painful things, which intensified those feelings and made them resonate loudly within my microcosm. Birthdays are especially difficult. Holidays are the worst. Realizing that Facebook trends place massive importance on Kim Kardashian’s nude photos over the astounding Rosetta comet landing? Maddening. I’d regularly share statuses or articles on Facebook. Things that really interested me, or things that I just wanted to voice to get off my back. You know, that very human desire to just say how I’m feeling. Put it out there. I’m probably different from a lot of my Facebook friends in that I live a very solitary life and don’t have a strong social support network, or a strong and reliable family network. Facebook had become my family. But when Facebook started reminding me of the reasons why I’m “no contact” with my Mother and my Brother? All bets were off.

Yesterday, I felt myself in a quandary about something with work. A customer had written on her invoice that she was having a hard time at work, and could I write something inspiring or nice on her paper invoice. I read it, and felt completely stumped. Numerous questions popped into my head, and I was immediately gripped by anxiety. When I read this, I was engaged in my daily routine of printing out orders, signing them, stapling them, putting a sticker on them, and putting them in numerical order for processing. This is part of my very structured daily routine for work. In my work, I rely on things being very orderly and routine, so that I can accomplish my basic tasks without my numerous executive function deficits popping up where they aren’t wanted. But this… this was a wrench in my works. I immediately began stressing and obsessing over it, wondering why someone who doesn’t know me nor I them, would want me to write something nice or inspirational on their order. It stopped me dead in my tracks, as the gnawing anxiety of having my daily routine interrupted gripped me. I soon found myself on the internet, searching for short inspirational quotes. I told myself, maybe this is what a “normal” person does? Finds a quote, any quote, and writes it down with a  heart or a smiley face? I found lots of quotes, but I also found myself dwelling on each one. What if she doesn’t like it? What if she hates Anais Nin? What if the quote offends her? What if I’m misreading her situation and the quote isn’t appropriate? What if she thinks the quote I chose is stupid? And the list went on.

After about 45 minutes of scrolling through quotes (when I should have been totally completed in this task and well into my next one), I posted on Facebook about it, just voicing my frustration with what I’ve learned is a social trend that seems to have originated via Reddit. There is a subreddit related to my line of work, and I occasionally read it, as it’s an extremely influential group of over 10,000 subscribers. There are some company owners who are talented artists and draw adorable things on customer’s invoices. There are others who hand write nice personal messages. I can’t draw cute things, and I have horrid handwriting, but I know how important a handwritten, “Thank you (customer)!” is, so I sit quietly with a stack of orders and try to carefully coax my hand into legibly writing a personal thank you to each customer, spelled properly. Sometimes I add a little heart, but most of the time those little hearts look like distorted little butts. I print my invoices on pretty paper that looks like pressed leaves and flowers, and I give every customer free samples that I choose based on their order contents. This is the best I can do, really.  I wish I could do it all- draw cute pictures, write perfectly legible, friendly, cool little notes, and leave customers so happy that they posted raves about my company and how happy I made them feel. But I can’t. That doesn’t mean I’m not giving 200% of myself, because I give everything I can. Unfortunately, it’s never enough. So I turned to Facebook to voice my frustrations to my friends.

Now you’re probably reading the past paragraph and think it sounds extreme that customers would expect these things, so I feel compelled to explain that this is a social trend that appears to have originated from Reddit. People requesting employees in various industries to write something, or draw something, and then the receiver sharing it via social media. It seems to be most popular in relation to the pizza box (or other food delivery) concept, where there is direct contact between parties. I personally don’t understand the trend, but I’ve tried. In some ways, it feels selfish for someone to expect a company owner to do this, especially a small company owner- particularly when I’ve shown no signs of doing this trend otherwise, and my being Autistic adds a whole other layer of complication on top of what one might feel is a simple request. I own and operate a small indie cosmetics company and do 99% of every task associated with said shop. To accomplish this requires very strict adherence to routine. I could write a very thick book about the mental gymnastics it takes to do my daily work, but now isn’t the time, as we were talking about… Facebook.

I made a mistake on Facebook last night, and I hurt someone’s feelings. I didn’t mean to do it, and when I found out I had hurt her feelings, I immediately apologized and explained myself. In my numerous discussions with friends about the latest social trend and my frustration and difficulty with a similar request in my real life, I mentioned something I had seen in my Facebook feed- a picture of a cute animal drawn on a pizza box, as requested by customer. I thought it was a viral image, that was being shared. I didn’t know that my Facebook friend had requested to have it drawn on her pizza box. She commented on my post and said it was her photo, and that the employees at the pizza places enjoyed her requests and drawing things. I immediately felt horrible and very worried that I had hurt her feelings. I saw her comment pop up on my phone, stopped everything I was doing, and sat down at my laptop to write her an apology. I apologized profusely, and told her I had no idea it was her image, that I hoped I did not hurt her feelings, as I would never intend to do that. I also tried to further explain that my frustration with this phenomenon, as an Autistic person who was being very affected by a customer request to do something similar. I explained that my feelings were in relation to the overall phenomenon, and not her specifically. I mentioned that if she and the employees at the pizza shop enjoyed this mutually, then that was awesome. Because it is. But for me personally as a neurodivergent business owner I feel that having these kind of requests are strange, and they make me uncomfortable and extremely stressed. My day was so affected by the request that I lost 90 minutes of work time, and was unable to pack a single customer’s order. That is a great example a direct executive function deficit in relation to my being Autistic. The request represented a complete interruption of my routine, asking me to change my routine, change direction, do something I had no clue how to do.

An hour later, I refreshed my Facebook feed, and saw a post she had made on her wall. It was about me, and was a very dramatic and contextually stretched version of what occurred deep within the comments of my post about the customer request. She either hadn’t seen, or didn’t accept my apology. There it was, her voicing very loudly how I had made her feel like a total piece of shit, and that I had sucked the joy from something that she liked doing. I felt horrible. Tears welled into my eyes. I immediately apologized to her again, trying to let her know how sorry I was, that I had made a mistake, that I didn’t know it was her photo. That I wasn’t referring to her specifically, but rather the overall social trend. That I never meant to hurt her feelings. The keys on my laptop started to blur and stretch, as words stopped coming out, and only frustration erupted. Because I had started reading the comments to her post. They were horrifying. Absolutely vilifying things were being said about me. Her friends said I was stupid. That I was entitled. That I needed to go to the proctologist to remove the stick from my ass. And numerous others that I don’t remember the exact wording of- just that they were devastating to read. One person posted a meme of cats licking their asses. Just about every reply inferred that I was a total asshole who deserved not a second of her time, and who was not deserving of her friendship. Tears started pouring down my face, and they didn’t stop for hours. I couldn’t stop them, and my Son saw me like that. I maintain my composure so well, so often, but I completely lost it when this happened.

It became clear to me that I had hurt her feelings, that my apology wasn’t wanted, and that she was going to hurt me back. She knew I would see that post on her timeline, because we interacted all the time. I thought we were friends, or at last friendly acquaintances. I liked her and respected her. She’s an Autism Advocate, and a moderator on numerous pages I frequented. Sure, she told her friends who had just ripped me numerous new assholes– that I wasn’t dumb, and that she respected me- but you know what? When you respect someone, you don’t lay them down on your Facebook page, wide open for the ranting and hurtful words of your other Facebook friends. At the very least, if she needed to vent about her upset at my innocently referring to her pizza box drawing as an example buried very deep within the confines of my own executive function nightmare, she could have excluded me from the conversation. No, she didn’t name me outright, but I’d be a complete asshole, devoid of any humanity if I didn’t see her post and immediately feel horrible and want to apologize repeatedly and let her know how awful I felt, and how sorry I was. That’s what I did. And then the walls closed in around me. I had been triggered, completely.

Every incident of being bullied, made fun of, laughed at, and insulted came flooding back at me. I couldn’t believe what I was reading, or that it was happening again. I never meant to hurt this person or make her feel badly. I would never do that to someone purposefully. I couldn’t have apologized more. Some might consider deactivating my FB page to have been a knee-jerk reaction, but for me, it was a survival reaction. As someone who has been severely bullied online in the recent past, what happened last night was deeply triggering. I’m not ashamed to say that I spent hours sobbing, or even that I started hyperventilating several times and had to breathe into a paper bag. I cried myself to sleep, and woke up with my eyes crusted shut with tears. I felt suddenly very alone, helpless, and confused. I work so hard every day to remain positive despite life’s challenges. But last night, all of those walls broke down.

I have no idea where this will go. The person whom I hurt is someone whom I consider to be very well connected and respected in the Autism community. She’s a moderator on several prominent pages. I would never purposefully hurt her, and I’m devastated about what happened. It’s impossible for me at this point in time to “un-see” the scathing comments her friends wrote about me. If she wanted to hurt me back for innocently using her pizza box drawing as an example in what I had written, she succeeded in spades. I cried more last night than I’ve cried in years. I felt more desperately alone last night than I have in years. I think it’s safe to say that she succeeded in punishing me many times over and over again, whilst triggering my psyche about severe bullying I’ve experienced in the past.

In other words, I’m wrecked, and Facebook is no longer a safe space for me. I have no idea where I stand within the circle of friends I thought I had. She is good friends with them, so I fear that I’ve just lost connections with people that I deeply respected, felt growing care for, and valued my friendships with. Knowing from experience that everything I think I have in life can be pulled out from under me in an instant, I’m not going to fill my mind with false hopes. Unless someone tells me otherwise, I’m going to assume that I’ve lost the connection and respect of a big part of my neuro-tribe. All over an innocent comment about a drawing on a pizza box…  that was never stated to hurt anyone. I don’t know if or when I might want to return to Facebook… I just know that right now, I feel uncomfortably vulnerable, and I need to deal with the flood of triggered emotions that this has brought forth.

On other fronts, Happy fucking Monday, y’all.