Check out Tom’s channel on My ASD Journey.
As part of Thomas’ journey of self-discovery since his ASD diagnosis – “Discovering Autism” became a way to share the experiences of individuals with autism and those who’s lives have been touched by autism, to promote a better understanding of autism by all. You can see other interviews and more about his experiences at “My ASD Journey” on YouTube. You can also see how he expressed different thoughts about becoming autistic in his “posters” on FaceBook called “Signs of Autism”.
On May 14th and again on June 3rd of this year, my mother had strokes. She’s alive, thank the gods, but she has very poor memory and possibly (probably?) dementia. It has been an awful time. I’ve been helping out as much as I can given that I am also disabled physically. But, it’s taken this long for me to talk about it. This has be an awful year. It’s been a horrible couple of years, but this was the topper.
On February 3rd of this year, I cut my flexor tendon on my pinky trying to cut a dog treat. Yah, I know. If I try to describe exactly how it happened, I may need a trigger warning even for NT’s. Everyone shudders. I had surgery to reconnect it on February 9th. I ended up out on leave after trying to go back to work. Then the leave extended as I was slated for back surgery in April. It was pushed back as I got other opinions and tried ablation.
At the end of February while my finger was still very much not healed, I received a renewal for my rental agreement in which my rent was raised $100, compared to the $27 dollar raise everyone else was receiving. This apartment had already sucked my finances dry. I had nothing more to give. I made the choice to move back in with my family. No surprises: my father was against it. My mother came to help me pack.
On the night before the move, she stayed too late, and got home in the dark. She tripped over a bag she left on the ground and toppled onto the cement so hard she bounced onto the grass. Her femur cracked. Off to the hospital she went. The obvious choice was to blame me, but is it really anyone’s fault?
My fault for not being able to sustain an extremely exhausting, painful, and truly damaging job that I never should have been in in the first place? My fault for choosing the wrong apartment? My fault for needing help from my elderly parents? My fault for being born different and unable to find a career path that doesn’t kill me? My fault for not being diagnosed before I was? I didn’t set the bag down on the ground that she tripped over. I wasn’t even there. She chose to try to bring everything in that evening. She didn’t need to. I still blame myself anyway. It was my situation that had her out at night.
The first stroke came a few weeks after she got home. She was in a panic to get to physical therapy. The therapist had my elderly mother doing exercises on the floor! I can’t! Was he aware of the meds she was on for her heart?! I don’t even know. I know she was a bit unhinged that day. Apparently, while on the floor she stopped making sense. The PT called 911. My father called me, and off I went to the hospital in my own panic.
It’s honestly terrifying to see someone you love go through aphasia. Aphasia is the inability to find the word to match the concept they want to express. It can be everything from incoherent babble to searching for words that are similar because the word has escaped you. She couldn’t think of my name. Heartbroken. I was just daughter. But, at least she knew who I am relationally.
I blame the alcohol, the warfarin, the poorly managed anxiety, and the mismanaged family money. The alcohol my mother used to calm her anxiety caused her atrial fibrillation mixed with panic over the house foreclosing for nonpayment for nearly a year and half and the crap drug warfarin she was stuck taking because Big Pharma is evil caused this bleed on the right side of her brain. But, as terrifying as it looked, she made a very fast recovery. In 2 weeks she was up and about. We thought she was coming home. But, by the 3rd week we got a call.
While they were waiting to put her back on blood thinners, a blood clot formed in her heart and travelled up a major artery to her brain. They were able to remove it, but the damage to this region of the brain was much worse. This second stroke was what really took her. It destroyed her ability to form new memories (mostly) and to access what she has already there. She’s lost decades of memories. She lives in what appears to be a series of waking dreams in different ages. Occasionally, she’s lucid, and her bad days aren’t quite as bad as they used to be. But being here means watching my mother fight with dementia and with us for alcohol that would only hasten it. It’s torture.
I’ve been back and forth to hospitals, rehabilitation centers, and nursing homes for more months than I care to remember. I’ve been pushing my body to help and ending up on my back for days. I’ve been fighting through burnout while trying to deal with grief and literal pain. Strike that. I’ve been fighting to figure out my life while dealing with burnout, pain, and grief without the one person I need to listen. She may never have really understood or had the right thing to say, but she never walked away. I cannot say that about anyone else in my life.
My TDI ran out in August. I have car payments I haven’t made. Stress is mounting on where I will be if the house does indeed foreclose. I, also, won’t be able to pay my phone next month, and my bank account is now in the red. More stress. The only thing I do have is food stamps, and my car till I have to cancel my car insurance before I go further in the red. Who exactly can I talk to about any of this? My father? Oh hell no. My mother? Nope. My brother? Never. Friend? What’s that? My therapist? He went MIA on me right as I needed him most. He’s finally completed this “Telehealth” course so we can talk via webcam, but we’re waiting on his insurance… of course.
So, with all this going on my brain and my body have been in no mood to participate in anything beyond the needful. I’m in shutdown. I can’t cry. I wish I could. I spend many hours laying on my side staring at Netflix because I can’t move or think. I did spend some time, and money, on trying to start a podcast, but it just didn’t go anywhere. I couldn’t get the sound right without investing a lot of money and moving away from an airport. I learned that you really need to love it. I don’t.
It wouldn’t change the money stress that I’m under anytime soon anyway. I’m mid-SSDI determination at the moment. It would really help to have a part time job to help right the financial ship, reduce the family obligations, and get myself out of my own head. It’s doing something very tangible to help myself through this quagmire.
Newsweek tells a tragic tale of an Autistic child bullied with a gun. Three arrested in the incident. I hope they throw the proverbial book at them. I got off on a bit of tangent on weight and bullying, but it ties back. I swear.
I’m unable to fall asleep… again, so I’m embedding my first couple YouTube videos. At some point, I’ll start doing highlight type links but not tonight. I don’t feel like it, and damn that’s a great reason to me after midnight.
FYI I am working on making my blog look the way I want to. If suddenly you see a look you weren’t expecting, that’s why. I oughta have some sorta poll or post or something. To Do list is insane right now. Burnout is awful.
[Update: My blog is fixed.]
I decided to fight my fears and face the camera. I’m used to being on the other other side observing the world, not participating. The real world is for the pretty, thin people, right?
I’ll get to why the long break since my last post shortly, but first, a few videos.
I have been reading quite a bit on human rights and disability both in the media and in philosophy, and I am appalled at the power the label “disability” has alleviated human beings of their agency and their rights.
Human rights are defined universally by the UN with specific charters for women and the disabled. I urge everyone to actually look it up themselves. And, please note as well the countries that didn’t sign, didn’t ratify, and/or put tons of caveats.
The basic point is that each human is just by virtue of being human is entitled to universal rights.
The principles of the present [disability rights] Convention shall be:
- Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
- Full and effective participation and inclusion in society;
- Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
- Equality of opportunity;
- Equality between men and women;
- Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
Here are some of the ways in which Autistics have faced human rights abuses at the hands of their caregivers and the public:
- Obsession with Cures/Pre-Natal Testing/Anti-vaxx: Hate of difference. This kind of crap LGBTQI also went through. Can we cure it? Fix it? Prevent it? They even get angry at Autistics for speaking out against this hate because we “clearly can’t understand” what the parents and their kid are going through, mostly the parents. They want to wipe us out of the gene pool by any means necessary, including refusing their NT child the life-saving properties of vaccines that have literally no connection to Autism whatsoever. Why? The medical profession has made billions on the idea that Autism is a disease that they could cure, but even they are now saying they cannot reduce Autism to a single cause or magic bullet product. The move inevitably will be toward acceptance, and hopefully a treatment for the worst co-morbids.
- Freedom to Have Independence Often Barred: Our ability to make choices and have independence is often tied to our diagnosis. We’re either denied rights because we haven’t been diagnosed, unemployed, and are stuck under the control of family or diagnosed and on disability, or can’t seem to get out of the cycle of bad employment followed by no employment. All of the above infringes upon our ability to lead productive lives. Granted the other end of the spectrum is a bit less and less able to make free decisions, but it should be fostered to the best of their ability.
- Reproductive Rights Taken Away: This was mentioned in a repugnant book by a Judith Newman (I refuse to plug her here), but I have seen numerous blog posts as well, mostly written by mothers who think their children will never be capable of raising a child. They may not entirely be wrong in all cases, but they should be given ample time to determine it. Yet, I keep seeing this discussion of wanting the right to force vasectomies and hysterectomies on Autistic children. The youngest I’ve seen was eight. They don’t even know what he or she will be like at 18 or 26 or 32 and yet they are ready to make life-changing procreation choices for them? Is this out of concern for care or is this out of fear of more Autistic people in the world?
- Growth into Adulthood Denied: In the same vein, removing the sexual organs before puberty would keep the child from growing further. At least one mother argued that keeping her child small will make them easier to care for as she grew old. Humans aren’t dollies to carry around. Disability doesn’t grant you the ability to alter someone in this way. What does this also say the mother? Our healthcare system?
- Children Taken: I know of one woman whose children were taken from her once she was diagnosed, although I admittedly don’t know the whole story.
- Disability Discrimination: “But, you don’t look Autistic.” “Autistics can’t [insert random life action here]. My friend’s cousin is Autistic, so I know.” “You can’t be Autistic; your eye contact is too good.” “You’re not Autistic, you’re just lazy.” “Retard!” “Weirdo! Freak!” We are constantly insulted or back-handed completed for masking well. We are called names for not fitting in. We can’t get the help we need without an embarrassingly patronizing display from healthcare professionals, and so on.
- Work Discrimination: The right to better ourselves is often denied us by hostile work environments that becoming more and more homogenized. Accommodations are woefully lacking and often insufficient. People gossip, manipulate, and back-stab normally, but they were worse towards those with invisible disabilities that they can make use or fun of. It’s exhausting. Trying to “pass” as normal doubles the damage, and further leaves us with severe self-esteem issues.
- Diagnosis Male-Oriented and therefore Male-Biased: Female diagnostic criteria for ASD is still not in the DSM. Still.
I’m not seeing any of these values in the treatment of those of us with hidden disabilities, with extra emphasis on ASD because of our social deficits. This is rather eye opening.
A social justice mural was vandalized in less than 24 hours after it was painted on the 12th of this month in Gainesville, Florida. “It was shocking because Gainesville is a very friendly, open, groovy, inclusive town,” Shirley Lasseter, member of the Gainesville/Ocala chapter of Women’s March Florida, told CNN. And the rest of the country thought, “It’s still the South.”
What is glaringly new is the use of Autism in a political statement. It is so out of place I have to wonder if it doesn’t mean the same thing to the fringe right as everyone else, since they have their own little hate glossary with meanings drawn completely from conspiracy conman Alex Jones or some such place. I’m going to have to dig to find out how they believe this ties together. Perhaps they think liberal values have caused the so-called “autism epidemic”? I had to investigate.
I tested out a bunch of terms starting with “seeds of Autism” since that was the phrase they created. That came up with one BBoard site called Ar15. I’m not linking to their dross. You can google that one yourself if you must. But, the line that stuck with me was one post that asked, “What fun is it trolling the leftist if they are too stupid to understand the joke?” A few other posts list other seemingly unrelated memes about a frog, and I was still perplexed.
Next I googled “‘Autism’ right wing glossary” et voila. Buzzfeed produced. “The Normal Person’s Guide to How the Far Right Troll Talk to Each Other” or “A Glossary of Far Right Terms and Memes”. And, my expected translation was fairly close except it was a trolling joke. So, for all my lefties, here’s how the thought process goes:
NEETS stands for “No Education, Employment, or Training” which self-deprecatingly refers to 4chan’rs that are loony right wing and also live in mom’s basement that spends all day playing video games or on the internet that may be on the spectrum. They call people who work, oddly enough, wagecucks or wage slaves. Unclear how they think the “free market” economy can work if all these twats don’t contribute, but whatever.
REEEEEEE! is the angry shriek of a 4chan’r. “Typically, it’s used to show anger at “normies” for invading their online spaces. There are memes of Pepe the Frog making that noise when he’s angry.” Presumably, Pepe then becomes the image of an angry alt-right loon when a lefty enters their forum.
Pepe the Frog is “A cartoon smiling frog created innocuously by comic artist Matt Furie that has, over time, become the official mascot of far-right extremism in the US and parts of Europe.”
Don’t you feel educated now? So, to sum up, the followers of Pepe, aka NEETs, were accusing the left of causing Autism with our politics to rile us up in some PC froth, but only managed to confuse everyone. Now they are just licking their wounds and blaming us for being too stupid to understand their memes without a f’ing translation. I’d call this a fail for the home team.
Further this has nothing to do with Autism really, good or bad. There’s nothing further to read into it. It’s for the most part been ignored post-CNN coverage, so, of course, I had to understand it, as if making sense of the alt-right is even feasible.
“Am I mad,” as the troll face always asks? No, I find it childish and in amazingly poor taste, but no, I’m not mad. I have plenty of real things in my life that warrant more of my energy, but I am angry that this mural was graffitied. Someone on that BBoard called the mural graffiti and likened the vandalism to the mural itself, as if the two can be equated just because it portrays politics they don’t like. Talk about twisting facts! More alt-facts. I’d like to know if there were any arrests.
There’s a rather oddly written article on Broadly. about Aspie women and the workplace. I say oddly for lack of coherent order or argument flow. It appears the intention is to talk of symptoms we women face, but it really is not tied back to one central point because it switches gears between symptoms and an employment organization. That said, I get where she was going: advertisement of the org via article. Got it.
Anywho… The symptoms mentioned are a good place for me to start talk about what I’ve been experiencing because of my workplace. I’ve been working for the government for three years. It’s absolute torture, and I’ve been in and out HR more times than I can count now. If it wasn’t for union protection I would have been fired just for not being the meek, avoidance type. Thankfully I’m not though because they eat people alive.
Because of this I know a lot about Aspie Burnout. I’ve had burnout 3 or 4 times since I started this same job. I’ve been on two medical leaves, both for physical problems, and emotional as well. I’ve had enough of the bullying and mocking, especially when they know full well my diagnosis. EEOC is coming, all I’m gonna say.
Right now I’m in a whole new zone, somewhere beyond burnout, where my vindictive and conniver aka my bitch side comes out. I didn’t want this side to resurface this way, but I am so done with this place I’d nuke it just as a warning to others.
(Because of the world we live in today, no, I would not actually hurt people. Please put the gun down officer.)
I kind of miss the days when I was completely naive to the fact that I even needed to guard my words. I had far more energy. It’s not like I’m even any good at pretending to be normal anyway, no matter how much people tell me I’m “so normal”. Actually, they really want to say, “You’re not different, you’re just an a$$hole,” which is so much easier for them to wrap their teeny, tiny brains around than to try understand what I really go through.
In the newer understanding of female specific “symptoms” there is something called “masking”. If you happen to not be familiar, it as studying another girl’s behavior to then mimic her as a way to try to fit in with other girls. Some (or many?) Aspie girls learn to do this to cope. It also costs far more energy than it would for a neurotypical to develop the same skills without a mask.
I never learned this mimicry, which has always been a double-edged sword. I’ve always felt super strongly that we are ethically bound to be open and honest. And now, in my late thirties & early forties, I’ve been fire forged to lose a bit of my naïveté, but gain the patience necessary to find out what people’s motives are, and they aren’t very good I’m finding. It is rather disappointing.
I have also believed in letting one’s freak flag fly, and this is not the exactly the standard business behavior. I have paid over and over for just being myself and hoping people will be accepting, but I am repeatedly disappointed there too. It does hurt the self esteem after a while, and it reinforces the idea either way that who you are is unworthy and people only want to be around mirrors of themselves. This is particularly true in my current office. Trump clones.
I don’t personally have issues with work clothing with the ever present exception of tags! and finding comfortable footwear. I don’t do cute shoes or anything girly really. But, I do struggle to find shoes that will accommodate the shape of my foot.
I wish my parents had encouraged my interests. Instead they’d say every single one as a waste of money. Toys for me were ever a waste of money. My parents let television raise me because it didn’t cost anything extra for them. My mother made a huge show of how wonderfully giving they were just to buy me new clothing at the beginning of the year and that became an excuse to not buy me Xmas or birthday presents. And, they weren’t even poor yet!! My mother went to Ann Taylor. They went of trips to the Caribbean. And so on.
So, that covers the symptoms they covered in the article. I’ll need to separately add more of my own.
With the exception of her lovely fantasy world and her terminal vanity, I identified completely with Anne with an E. I see Vanity Fair is having a fit over the reworking of the story, but I just adore her. Her battle to survive and be accepted feels so much like my normal. Including her understandable PTSD, she’s definitely an Aspie.
Okay, so what if she saves the day twice in one season? So what if turn-of-the-century Ontario isn’t all roses and sweetness? This seems more like a real world, and rough like life is for an Aspie child. Imagine if you, Miss Joanna Robinson of Vanity Fair, actually understood what it’s like to be misunderstood and feel constantly like one giant shredded nerve.
Conversely, if you want to complain about a movie not matching the book. You should be far more offended by the movie version of Hitchhiker’s Guide. It was a terrible disappointment because they ruined Douglas Adams’ jokes. Never mind the pathetic version of Zaphod, all the missing scenes, and the reduction of a brilliant Trillian to a dim damsel in distress, they actual cut his humor, which is far more of an atrocity than the rest. And, this was never claimed to be “based on”. It was supposed to be half of what Adams had adapted, written himself, as a script before he passed. I wish I never saw it. Let’s keep outrage where it’s appropriate, hmm?
I don’t honestly care how well Anne with an E keeps to the Anne of Green Gables story. It’s only based on the story, it isn’t the exact story. The exact words from Wikipedia are, “series based on the 1908 novel”. They intentionally made it their own, and I think they created a new version that beefed up what many had suspected about Anne’s neurotype and her devastating life. Perhaps it doesn’t mirror the book, but it certainly mirrors the reality of being the outcast.
I’ve been the girl a parent says their child can’t go near for nothing more than horrible assumptions. I’ve been the girl the popular girls corner and taunt. I’ve been the girl that hides in the tutoring room during lunch because I had nowhere else to sit. I’ve been the girl that was punished by teachers for things I never did, publicly humiliated and privately apologized to. Is Anne with an E believable? Emphatically YES.
It certainly more believable than the an poor orphan being immediately popular with wealthy townies. Seriously, what does everyone think of foster kids right now even? Humans were no nicer or accepting then than now. Let’s get a grip. Life was never Little House on the Prairie.
That all said and certainly more importantly, the Aspie traits I see in Anne are as follows, and feel free to comment and deny or add anything you like.
- The fantasy world Anne retreats to to get the acceptance she craves.
- The loud and very chatty behavior Anne has on topics of her interest.
- The well-read knowledge she has for her age, including the large vocabulary.
- The “get out of my way and let me fix it” attitude, even towards adults.
- The inability to tell what is inappropriate knowledge to share with peers.
- The play acting out how she thinks conversations with go in a social setting.
- The desperate attempt to follow the social rules she’s told directly.
After watching the series with my father, my mother for the first time in my 41 years actually said she finally could comprehend the abuse I received in grade school. Imagine that!? That’s enough for me to give this puppy an A+.