Book Review : To Siri with Love

This is a memoir written in a series of essays by the mother (Judith Newman) of an autistic teenage boy (Gus). The overall theme of it is the boy learning to connect with machines such as Siri and trains in a way he’s had trouble connecting with humans and that in turn leading to improved connections with human beings. This is a memoir that has generated a lot of controversy, as many people are disgusted by the way this woman writes about her son and autistic people in general.

Let me start out by admitting a couple of things that may get me crucified in the autism advocacy community: I bought this book and there are aspects of it I appreciated.

I was aware of the #boycotttosiri movement and at first I didn’t want to give money towards the book so I read it when I went to the bookstore but eventually I lost patience and purchased it on my Kindle.

I liked that this book gave a counterpoint to the narrative that technology is destroying society and relationships. I don’t use Siri but I’ve found other aspects of technology such as Facebook to be helpful to me when it comes to forging relationships.

It was interesting to me that Gus was initially diagnosed with Nonverbal Learning Disability. That is my official diagnosis. Although only a sentence is devoted to it, exposure in a high profile work may at least make people aware that it’s a deficit in processing nonverbal information (and not an inability to talk, as is often assumed.)

Thanks to this book I learned about some new autism programs that have been developed or are in the process of being developed in my own home state.  There’s a bookstore in New Jersey that only employs people on the autism spectrum and Rutgers is developing an autism living community.

I laughed a few times because the author says some funny things.

That being said, none of the positive aspects of this book are enough to redeem it in my eyes in the face of all the things I find wrong with it. I agree with the criticism leveled at it by the autism advocacy community. I won’t go so far as to say this woman doesn’t love her son, as some have but I will say she writes about him in a disrespectful manner. The overall tone of this book is distasteful and off putting to say the least.

The tone is along the lines of “I’ve suffered this horrible tragedy but I’m not going to let it get me down. Let me tell you how I’ve managed to persevere in the face of this tragedy through dark humor and wit poking fun at the tragedy.” This kind of tone is okay if you’re talking about your cancer diagnosis, your failed marriage or your tornado-ravaged house. It’s not okay when you’re talking about your autistic child.

Let’s start with the passage that has garnered the most outrage: The one where she talks about how she’s going to sterilize Gus because she doesn’t think he’ll be a good parent. She asks “How do I talk about this without sounding like a eugenicist?” You can’t because what you’re talking about is eugenics.  You shouldn’t decide that someone will be a bad parent as an adult based on what they’re like at age thirteen. Actually YOU shouldn’t be deciding whether or not someone else reproduces at all. That’s a decision they should make for themselves

She says that when she envisions Gus having sex she envisions a Benny Hill tune playing in the background and that can’t end well. I don’t know who Benny Hill is so I can’t find that joke funny anyway but it’s especially unfunny that she makes a joke like that at the expense of her son.

Really, the whole book is at her son’s expense. She invades his privacy, makes all kind of embarrassing comments about him and reveals all kinds of embarrassing details about him without his consent. She expresses the belief that autistic people can’t feel embarrassment, which would explain why she had no qualms about writing a book like this about her son, when I’m sure she would have been humiliated had her own mother written such a book about her.

This belief that autistic people can’t feel embarrassment is erroneous, dangerous and dehumanizing, as are the beliefs she expresses that autistic people can’t feel empathy and have no theory of mind. And the part where she wonders if Gus thinks? I thought my eyes would roll out of my head.

As if commenting on her desire to sterilize her son and on the soundtrack to his sex life weren’t bad enough, she also says that she can’t imagine any girl finding him interesting and complains throughout the book about how uninteresting she herself finds him. You know what?  Given the choice between spending a day with Judith Newman and spending a day with Gus, I would choose Gus, no question.  People who have autism or some other disability, who have atypical interests, behaviors, or speech patterns can be good friends and good lovers. Interesting is in the eye of the beholder.

In case you can’t tell, I don’t like Judith Newman very much. She comes across as selfish, entitled and judgmental. She feels entitled to pass judgement on issues she hasn’t got a clue about. When reflecting back on childhood classmates of hers who were bullied and who she assumes were autistic, she criticizes their parents for sending them to a mainstream school where they would be known as a retard. She has no idea what options were available to those parents or why they made the choices they did. Some special needs kids are better off in special schools but they shouldn’t automatically be sent there for fears of bullying in the mainstream.  If they do end up being bullied maybe it’s the behavior of the bullies that should be criticized, rather than the behavior of the parents.

When speculating on the reasons behind the rise of the incidence of autism, she suggests that people with autistic traits who in previous times would have been unable to find mates are now reproducing and she adds in “Thanks, Tinder!” That’s disturbing in the same way wanting to sterilize her son is disturbing. At least she didn’t say “Thanks, Obama”?

When discussing autistic students at Cambridge objecting to research being done in to pre-natal genetic testing for autism, on the grounds that it would lead to eugenics, Newman says that it is not the place of the autistic people who attend Cambridge University  to speak for the autistic people who are sitting alone in their rooms twirling objects.

First of all, if pre-natal testing for autism ever becomes possible, I seriously doubt it will be possible to tell if an autistic fetus will end up attending Cambridge or sitting alone in their room twirling an object. Second of all, can we please stop acting like autistic people who attend Cambridge and autistic people who sit alone in their room twirling objects are mutually exclusive categories, as if there can never be any overlap between the two? I didn’t attend Cambridge but I did attend university and do you know how much time I’ve spent sitting alone in my room twirling rubber bands? At least as much time as I’ve spent attending university.

She reveals that she and her husband (who she thinks is on the autism spectrum) are happily married but have always lived in separate apartments. That seemed strange to me but I can’t blame her husband for not wanting to live with her. She sounds insufferable.

Her reaction to criticism of her book did nothing to improve my impression of her. In response to accusations that the book is damaging to autistic people she said “I didn’t write it for them.” Sounds like she could use some lessons in empathy and theory of mind.

When she heard that people who didn’t appear to have read the book were leaving one star reviews of it on Amazon, she tried to get them taken down. Suck it up, Buttercup. You put your writing out there and people are free to criticize it. People leave reviews of books they haven’t read or finished all the time and proof of purchase has never been required. She claims that those people who are objecting to quotes from her book don’t understand them because they haven’t read them in context. Well, I have read them in context and it doesn’t make them any better. I’m sure if those people read your book, they would be more horrified, not less.

Within the autism community there’s a big divide between autistic adults who are deemed to be high functioning and parents of autistic children who are deemed to be low functioning, mainly over the issues of wanting a cure for autism and how those parents talk about their children. I feel like I’m more sympathetic to parents of autistic children than most but I still draw the line somewhere and Judith Newman crossed it.

Still, I’m glad I read this book. In addition to the good aspects of it I mentioned before it’s inspired me to start working on a story of my own of a similar nature ( I got the original idea for it from Life, Animated, another memoir written by the parent of an autistic boy that has a similar theme to To Siri with Love.) I’m not rich or famous like Judith Newman is (it’s a shame that it’s usually only the people with power, prestige and connections who get their voices heard) so my story won’t be as widely read or acclaimed as hers is but it also won’t be as widely criticized. I’ll try to write about autism in a more accurate and sensitive manner than she did.

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When Online is Out of Line: An Interesting Discovery

Soon enough my two-week enforced break period was up and I returned to the forum. In retrospect I wish I hadn’t returned. It would have saved me further drama, trauma and heartache. But hindsight is 20/20 and all that.

In fact, during my break Bernadette asked me if I thought I would ever leave the board. I replied “I think I might get banned eventually or the board might shut down” so clearly at that point I could not contemplate leaving.

I though of some things to say to the moderators and to the people who attacked me about the things they had said and done in my absence but in the end I did not say a word to them about it. I realized it wouldn’t do any good because they obviously knew how much they had hurt me and they obviously did not care. By responding angrily I would be giving those people exactly what they wanted. Instead I focused on thanking the people who had said things about me that were helpful or supportive.

As you may recall, the character I call Marcia was the one who said the nastiest things of all about me. Naturally this made her the subject of a lot of the conversation between Bernadette and I and naturally it made us curious about her. Bernadette asked me if I’d ever looked her up on social media. When I replied that I hadn’t she looked her up herself and shared what she found with me.

We had fun snarking on Marcia’s pictures and creating lolMarcia memes. I know it’s not very nice to make fun of anyone’s physical appearance because they can’t help the way they look but Marcia can help the way she treats people so I was pleased to discover that she’s as ugly on the outside as she is on the inside. And her fashion choices certainly don’t help matters.

Then Bernadette snooped on Marcia some more and discovered something interesting. Remember how Marcia accused me of lying about my identity? Well, it turns out she was being dishonest about her own identity.  Internet sleuthing revealed that her first name wasn’t Marcia as she claimed, her middle name wasn’t Ruth as she claimed and her last name wasn’t Jackson as she claimed.

If it seems weird that one would reveal one’s full name on an internet message board and weird that we would care that she was lying about her name, remember that this was a board about names. Marcia talked constantly about how she hated it when people spelled her name Marsha, pronounced it Mar-see-uh and made Marcia Brady references. She talked about how radical she was for keeping her maiden name of Jackson when she got married back in the 70’s. It turned out she’d actually taken her husband’s name of Green when she got married.

She also talked about how much she hated her sister’s middle name, Veruka.  It turns out Veruka is her own middle name and that the sister she calls Airlie appears not to exist. I suppose it’s possible that she just didn’t include her sister on her online family tree (that gave the option of listing a relative but making their name and information private) for whatever reason but despite the ninja’s previous advice, I’m not too inclined to give Marcia the benefit of the doubt on this one.

Let me make it clear that I have no issue with anyone using pseudonyms for the sake of privacy. In fact I’m using pseudonyms for everyone on this blog (I’m even using pseudonyms for pseudonyms-Marcia is not the name the asshole known as Marcia claimed to have) except Airlie, because there’s something very Freudian and funny about having a sister named Airlie who’s a lie you pulled out of the air.

What I do have a problem with is someone having the nerve to claim to have no tolerance for lying of any kind and to accuse others of lying about their identity with no evidence to back it up, when they are lying about their own identity. I wasn’t the only one she took to task for supposedly lying. She once chewed someone out for lying by referring to her friend’s son as her nephew. Funny, considering there’s a good chance her own nieces don’t exist at all. She said she did not think it was okay to lie about names on the forum. Funny, considering she had been lying about names on the forum for years.

The forum in general had a low tolerance for lying. It was made clear that you could choose not to reveal your name or your location but that if you lied about your name, location or pretty much anything else, you would be banned. Many people were banned for lying-sometimes for things like names, dates and locations, other times for things like fake children, fake deaths and fake stories. My personal favorite was the woman who was banned for pretending her dog was a human child.

Members of the board would go to great lengths to root out lies of other members through internet detective work and would take great delight in outing them for their dishonesty on the board. The person who lied would then be banned and the person who exposed them would be hailed as a hero.

The board rules stated that if you suspected someone of lying you could either contact a moderator about it or start a thread to out them.

“So, what are you going to do with the information you found about Marcia?” I asked Bernadette.

Public Service Announcement

Some of the things I write about on my blog are not being written in real time. They are things that happened years ago. There’s often more to the story than can be contained in one blog post so the story will be continued in future blog posts.

When I write about traumatic events in my past, responding by telling me to move on or stop dwelling on it is not appreciated. If you’re someone I know commenting anonymously isn’t going to work because your IP address will tell me who you are.

As Anne Lamott would say, I own everything that happened to me and I will tell my stories. If you wanted me to write warmly about you, you should have behaved better.

When Online is Out of Line: A Smoking Gun and a Dead Body

Bernadette told me that she had received a message from a moderator saying “It has come to our attention that you have been taking screenshots of the thread about Kira and sending them to her. What do you have to say about that?”

She had been sending me information about that thread but not in the form of screenshots so she replied “I have not taken a single screenshot of that thread (or any other thread as far as I can remember). Whoever told you that is lying.”

The moderator then replied with:

“Are you sure? I have a screenshot that says otherwise. It would be wise to come clean at this juncture.”

To which Bernadette reiterated: “I have not taken any screenshots. If you’ve seen a screenshot, it was not taken by me.”

Of course all of this only added to the fear and anxiety I was already feeling. Additionally I felt guilty for getting Bernadette in trouble but she assured me it wasn’t my fault and she bore no grudge against me.

Both of us were baffled by what the moderators had said because even if she had been sending me screenshots, short of somehow hacking in to our e-mails how on earth would they have been able to prove that?  What were they claiming to have a screenshot of? A screenshot of Bernadette sending me a screenshot? How would that work?

“The more I think about it, the more I think the moderator is lying” Bernadette said.

She decided to send an e-mail to the forum administrator, Lorna about the matter.

After explaining the situation Bernadette wrote in her e-mail:

“Okay, so something strange is going on right now, because like I said, I have never sent Kira any screenshots.  Please bear with me while I run through the few possibilities I can think of:
1.  Some liar took a screenshot of the thread about Kira and sent it to the mods, claiming that I took it.  Maybe the liar even Photoshopped the screenshot somehow to make it look as if I sent it to Kira.  The liar might have claimed that I sent the screenshot to Kira, who then sent it to the liar for some reason, not knowing that the liar would show it to the mods.  This scenario seems pretty unlikely to me, but I guess it’s possible.  In fact, I want to believe it’s true, because the other scenario I can think of is more upsetting to me:
2.  No one sent the mods any screenshots.  Knowing that I am friendly with Kira, ninjamod6 suspected that I might be sending her screenshots and decided to see if she could get a confession out of me.  In doing so, she lied to and manipulated me, abusing her power as a moderator.
I really don’t want to believe that one or more mods is essentially out to get me and/or Kira, but the first scenario just seems pretty unlikely to me.  I also have to ask, is sending screenshots actually against any board rules?  Again, I never sent Kira any screenshots anyway, but is ninjamod6 even justified in questioning me about sending screenshots?  I am just kind of baffled by this whole event.”
Lorna replied:
“If  the mods had it out for Kira she would have been banned ages ago. It would have saved them hours and hours of grief, would have made their lives easier, would have made their Thanksgiving nice and quiet . That we just gave Kira a two-week break rather than banning her has not been a popular decision but it’s fair
As for the screenshots, I’ve seen Ninjamod6’s evidence. It’s not a smoking gun and a dead body but it’s not nothing. If it was a conspiracy to frame you a lot of people put a lot of time and effort in to it.
I understand that Kira is asking you what people are saying about her. Nobody likes being talked about but sending her screenshots is defeating the purpose of the break, which is to get everybody to cool down. It’s spreading the drama, not containing it. IT’S NOT HELPING HER. “
The implication of that e-mail seemed to be that I should feel grateful to the moderators for not banning me despite pressure to do so but after all the nasty, unfair things they’d said and done to me, it was hard to feel gratitude towards them. I understand that I put them in a difficult position and that I was basically a moderator’s worst nightmare-someone who annoyed a lot of people but didn’t actually break any forum rules. I don’t know what the ideal solution to the problem was but I do know that starting a thread inviting the whole board to trash me when I wasn’t there to defend myself wasn’t it.
Maybe sending me information about the thread while I was on break wasn’t helping me but do you know what else wasn’t helping me? Starting that thread in the first place. I don’t see how it helped anyone. It certainly seemed to be inflaming the situation rather than cooling it down. No conversation about a conflict is going to result in an effective solution to that conflict if the person who’s the center of that conflict is not an an active participant in it. If people are just going to insult me, attack me and say I’m never going to change, they’re probably right about that last part.
“It’s not a smoking gun and a dead body but it’s not nothing and a lot of people put a lot of time and effort in to it? What could it possibly be?” Bernadette wondered.
“It IS nothing, or at least nothing that proves anything” I replied.
“Yeah, it’s “evidence” “
“Have you heard anything more from the ninja moderator?”
“Nope”
“Oh no, she didn’t believe that we could see her taking screenshots with our magical ninja powers! What do we do now?”
“Yeah, I may be naive but I’m not THAT naive.”

Book Review: Juniper: The Girl Who Was Born Too Soon

via Daily Prompt: Viable

I’ve been meaning to write some reviews of books I read in 2017 and this prompt made me think of the book Juniper: The Girl Who Was Born Too Soon. It’s a memoir written by the parents of a girl who was born prematurely. The age of viability is considered to be 24 weeks. Juniper was born at 23 weeks, 6 days.

The story is told from the alternating perspectives of Juniper’s mother and father, Kelley and Thomas French. Although they have some different perspectives and experiences and the chapter titles indicated who was writing, their voices are similar enough that at times I mixed them up (Obviously that wasn’t an issue when they were describing experiences like being pregnant or jacking off,) Both of them are journalists and both of them are good writers. The thing about memoirs is that you can’t just have a good story, you also have to be a good writer for it to work. A few months ago I read a memoir by T-Boz, one of the women from that band TLC ( She has Sickle Cell Disease and my friend has a daughter who has Sickle Cell Disease so I was interested in learning more about it) and while her story was a compelling one, the book sucked because her talents lay in singing, not writing.

With Juniper we have two people with an interesting experience to share and a talent for writing, resulting in a good book that I enjoyed. Aside from the fact that I came close to being born prematurely, premature birth is not a subject I have any personal connection to but they wrote in a way that left me feeling emotionally affected and as though I was right there in the NICU with them.

Since Juniper was born right on the cusp of viability she would need intensive interventions to survive and even with intensive interventions there was a good chance she would die anyway. If she survived there was a good chance she would be seriously disabled. Not long ago doctors wouldn’t have even considered treating a baby born at Juniper’s gestational age and today many hospitals still refuse to do so. Juniper’s parents were offered the options of trying to save her through machines and tubes and surgeries or letting her die naturally. They chose to try to save her.

Juniper weighed one pound, four ounces at birth. She was described as being tiny, translucent and resembling an angry old man. All of her veins were visible and her heart could be seen beating beneath her chest. She ended up spending seven months in the NICU. It was an emotional roller coaster of an experience for her parents.

Although having a micro-preemie was distressing and terrifying and it’s not something they ever would have chosen, they also acknowledged that it was a transcendent experience and found beauty in it. They saw the beginnings of human life in a way that not many people get to. Looking in on their daughter’s incubator was compared to being let in on a secret.

Through all the harrowing times where the threat of Juniper’s death was ever present, in addition to the fear and distress there was love and care and tenderness-from Juniper’s parents, from her doctors, her nurses, her relatives and friends of the family. Juniper couldn’t be held much in the early days because she was so fragile but her caretakers found other ways of connecting with her, of making her feel safe and loved. Bruce Springsteen music was played in to her incubator. Her father read Harry Potter to her. The first chapter of the first book is called “The Boy Who Lived.” Ultimately Juniper was the girl who lived.

Of course not all premature baby stories end as happily as Juniper’s did and when a premature baby is born there’s no way of knowing exactly how things will turn out so the treatment of micro-preemies raises ethical questions. These ethical questions are raised periodically throughout the book. A woman says to Kelley regarding the intensive interventions that are being employed to save Juniper’s life “Wouldn’t it be better to vaccinate 1,000 children in Africa?” Kelley replies “Better for who?” I applaud Kelley for that response. Personally I would have been tempted to respond by slapping that woman.

For a book that deals with such a serious issue, it contains some hilarious moments. I was cracking up when Tom described the awkwardness of being handed the Ass Masters series to masturbate to in the fertility clinic. Just like Juniper has an interesting birth story, she has an interesting conception story. Although Kelley gave birth to Juniper, she is not her biological mother. Juniper was conceived using the donor egg of a friend of the Frenches.

The book also gets in to the story of how Tom and Kelley became a couple. It’s a story that involves infidelity, selfishness and some questionable life decisions. It doesn’t put either of them in a very good light and while I don’t think writers should be afraid to reveal unflattering details about themselves when it adds to the story, I have to question the wisdom of revealing these particular details when I don’t think they added much to the story of Juniper. If they were looking for material to pad their book, I wish they’d covered the time period between when Juniper went home from the hospital and when she was four years old, which is where the book jumps to in the epilogue.

Today Juniper is thriving. In fact, on the website for the book among reviews calling it a tender, fierce, breathtaking miracle that expands our understanding of being human, there’s a review from Juniper that reads “My butt is on the cover. That is why this book is special to me.”

 

New Years Resolutions

1. Donate blood 6 times – That’s how many times a year I’m eligible to donate. I donated 3 times last year.

2. Read 50 books-  I read 41 books this year but I’ve read 50 books before so I know it’s possible.

3. Write 3 blogs a week- There were times last year when I achieved that but there were also times when I went two weeks without writing one.

4. Get to bed by midnight- I have sleep problems and I hate feeling tired all the time. I resorted to sleep hypnosis last night. I think I finally fell asleep around 3.

5. See a nutritionist- I was going to say eat healthier but first I need to know what healthy eating is. I did try a health challenge last year but I dropped out, mostly because I hated all the restrictions on bread products.

6. Exercise for 30 minutes each day-This will be hard because I hate going out in the cold but luckily I have a gym across the street from me.

7. Clean up after myself- I’m a total slob and the people who have to live with me do not appreciate it.

8. Don’t argue with idiots- It’s tempting but it’s ultimately not worth the time and energy. Shortly before midnight on New Years Eve I got a nasty Facebook message from a woman who was angry that I put claw caps on my cat to prevent him from destroying the furniture. It was not the kind of message I wanted to end the year with but it did give me a chance to put my resolution in to practice. I blocked that idiot.

9. Connect with new friends/reconnect with old friends-Shortly after midnight I got another Facebook message that allowed me to put one of my resolutions in to practice. This message was much nicer. It was from an old friend I hadn’t spoken to in a while and we had a lovely conversation.

10. Go back to college- It remains to be seen if I applied in time for the spring semester but I’ll try for the summer or fall semester. It’s time to finally finish what I started.

Finally: Top Ten Best Things I Did in 2017

via Daily Prompt: Finally

1. Moved to a new house- I finally got away from my evil stepfather. It’s so nice to no longer live with someone who treats me like shit. It’s also nice to live within walking distance of my father, the pond I’ve loved since childhood and a bunch of stores and restaurants. It’s done wonders for my self esteem and happiness.

2. Got a cat- I finally have a kitty!  I’ve wanted one for years and in September I adopted a black cat named Dr. Zeus.  And oh, what a fine feline he is! He’s so cute and has so much personality.

3. Went to Florida- I finally got to visit Key West, Fort Lauderdale, and Miami for the first time and I finally got to go to Disney World again. Other Floridian places I visited included Naples, Bonita Springs and Jensen Beach. I had some fun and exciting experiences including swimming in natural springs, snorkeling and having my nose picked by a lorikeet.

4. Gave blood-I finally gave a potentially life saving gift. I got the idea to donate blood in late 2016 after I had blood drawn for medical testing. I donated three times in 2017. The process didn’t always go smoothly but the end result is gratifying. I even got to learn when and where my blood was donated.

5. Became a Blogmutt writer- I finally have a source of income. It’s not much income but it’s good to know that someone will pay me to do something. I was so excited when my first blog post was purchased and I got my first payment. I don’t think any adult has ever been that happy to make $8.

6. Became an ESL/literacy tutor- I finally have an answer to the question “So, what are you doing these days?” When I went to the training session I realized I had more in common with the literacy students than with my fellow tutors. Even though I’m very literate, like the typical ESL/remedial literacy student I struggle with employment, independence and social interactions. I have feelings of shame, embarrassment, fear, anxiety, nervousness, isolation, shyness and low self worth. This realization made me uncomfortable at first but I’ve also realized that empathy is a good thing when it comes to working with people who are struggling.

7. Made new friends/reconnected with old friends- I finally have friends again. I came out of my shell, reached out to people and was receptive to people who reached out to me. Many of those friendships are online friendships but anyone who thinks online friendships aren’t real has never had a good online friend.

8. Had a birthday dinner with my friends and family- I also have real-life friends and I got to celebrate my birthday with them. I’m finally fulfilling my promise to my friend and party planner extraordinaire, Delilah, to mention that birthday dinner on my blog. One of the presents Delilah gave me was a stuffed pig that has a funny story behind it (that will have to wait for another blog.) It has personal meaning to me and another friend who was present at my birthday dinner. Although I was quite traumatized by that pig when I first encountered it twenty years ago, today I treasure it. I also treasure everyone who was present at my birthday dinner and all the presents they gave me.

9. Got an Instagram account- I finally got with the times. For all the bitching I hear about how social media is destroying our relationships and mental health, it has truly done wonders for me socially and emotionally. At first I didn’t see the point of having Instagram when I already have Facebook but in April I decided to give it a try. I’m glad I did. It somehow has a different feel from Facebook and since the younger generation is starting to see Facebook as a place for old fogies, it’s allowed me to have an online connection with some of my younger friends and family members who don’t have Facebook. Now not only do I have an Instagram account, my dog and cat do as well.

10. Let go of shame- I finally stopped letting shame rule my life. As I mentioned in #6, I do still struggle with shame but the fact that I did all these things on the list shows that its hold on me has loosened considerably. They may not seem like a big deal but for most of 2016 I was not ready, willing or able to do most of the things on this list.

Here’s to doing at least ten more great things in 2018.

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When Online is out of Line: A difficult Thanksgiving

The treatment I had received on the board and the thread devoted to picking me apart had sent me in to an emotional tailspin. I was constantly upset and agitated. I felt nervous, worried and anxious. I was overwhelmed by anger and despair. I perseverated on everything that had been said about me and everything I had said. I contemplated what I could have said differently and what I would say in the future.  I was unable to concentrate or focus on anything around me and I kept getting distracted, as my mind was elsewhere. I was frequently shaking, flapping and gritting my teeth.

My family noticed this and asked me what was the matter but I couldn’t bring myself to tell them. I found the whole thing too embarrassing and shameful. When I was brought to my psychologist and my psychiatrist for emergency sessions I couldn’t bring myself to confide in them either. My medication was adjusted.

Bernadette was upset by the way I had been treated on the board, especially by the way Marcia had treated me and she was upset that the moderators hadn’t done anything about it. She sent one of the moderators a message asking why they were okay with Marcia personally attacking me and accusing me of lying with no evidence to back it up. She received the following reply:

“There’s a lot that goes on behind the scenes of the board that you don’t see-messages between moderators and between moderators and other members. Nobody got off scot-free, it just didn’t get dragged in to the public arena. If Marcia wants to start a thread throwing a fit over the things that were said to her in private that would be her prerogative and you could find out exactly what went down. As she hasn’t done that, you’ll just have to trust that the moderators are doing their best to apply the same rules to everyone as fairly as possible.”

Gee, it sure was nice of the moderators to give Marcia the dignity of privacy. Too bad they couldn’t afford me the same dignity. You can see what a great job they were doing of applying the same standards to everyone.

That Thanksgiving I went to my sister’s house to celebrate, where I was exposed to more family members asking me what the hell was the matter with me. This was supposed to be a day of thankfulness and celebration. I knew that in the grand scheme of things being targeted on an internet message board was not that big a deal and that I had plenty in my life to be grateful for but with the emotional turmoil I was in, I wasn’t feeling very thankful or festive.

Then, just when I thought the situation with the forum couldn’t possibly get any worse, it did.

Almost

via Daily Prompt: Almost

I almost was unable to donate blood yesterday. I’d donated twice before but the third time I tried the nurses were unable to get my veins. This time the first two nurses who tried were unable to get my veins but a third nurse saved the day by saying “Girl, she’s got a big vein in the center! I don’t know what y’all are talking about.”

I had a bad reaction to this blood donation. I became dizzy, light headed and nauseous. I almost fainted. I almost regretted giving blood. I almost decided I would never give blood again.

But then I thought of the people I was potentially saving from much worse pain and suffering than what I was experiencing as a result of my blood donation. I thought of the person who because of me might be able to say “I almost died but then I got a blood donation.”

I almost didn’t write this blog. It almost felt like bragging. It almost seems that if you do a good deed you should just keep quiet about it because that shows that you truly did it to help someone else and not to make yourself look good.

But then I remembered all the e-mails I got from the Red Cross saying there’s a critical shortage of blood and a critical need for blood donors. I remembered that the Red Cross encourages everyone to take a selfie and share it on social media after donating blood.

Now I almost hope that my cyber enemies and maybe even my cyber friends are sitting around trashing me for being so vocal about donating blood. Because that means they’re talking about blood donation and blood donation is something that needs to be talked about.

Image may contain: 1 person, smiling, standing

 

Confess

via Daily Prompt: Confess

I must confess that even though I hate it when people claim that someone is too high functioning to be autistic or not autistic enough to count or truly suffer, I am a perpetrator/victim of that kind of thing myself, at least in my own head.

I don’t feel comfortable saying that I’m autistic or have autism. Instead I say I’m on the autism spectrum. What essentially is the difference between being on the autism spectrum and having autism or being autistic? I’m not sure that there is one but somehow saying I’m on the autism spectrum feels safer and more appropriate.

Maybe if I emphasize that autism exists on a spectrum, I’ll protect myself from the judgments and accusations of others. Maybe they’ll realize that autism doesn’t just encompass people who are intellectually impaired, have limited use of language and are smearing feces but people like me who are able to express themselves eloquently, go to college and pass for neurotypical. Maybe I won’t get told that I don’t seem autistic or that it’s impossible for me to have autism.

Maybe if I emphasize that autism exists on a spectrum it will be understood that every autistic person is different, that if you’ve met one person with autism, you’ve met one person with autism. Maybe I won’t be compared to other autistic people, maybe I won’t be told I’m using autism as an excuse.

But if I’m being honest those kinds of judgments and accusations aren’t just coming from other people but from me. They’re directed towards myself and towards others. I don’t voice such opinions about myself very often and I rarely voice such opinions about others on the autism spectrum but they exist in my head. They’re often fleeting thoughts that I challenge, that I push away and that I’m ashamed of but they exist nonetheless.

For as long as I can remember I’ve felt that I was somehow different from most other people and not in the ‘everyone’s special and unique” kind of way. I knew that I had some kind of disability, that I was at some kind of disadvantage, that I was somehow wired differently. Everyone who got to know me realized this but for my entire childhood no one considered that I could be autistic and it never crossed my mind that I could be autistic either.

In those days the general views and perceptions of autism were pretty narrow. Autistic kids were only those kids who didn’t talk, didn’t make eye contact and were entirely off in their own world. There was no way a child who was as verbal and eloquent as I was could be autistic.

Even though the perceptions, classifications and diagnostic criteria have changed since I was a child, even though today plenty of people who express themselves eloquently proudly (or not so proudly) call themselves autistic, I still have trouble shaking the original stereotypical perception of the autistic person. It’s ingrained in my mind and it’s a person that isn’t me. “I’m autistic”, “I have autism”-when I try to make those words flow from my tongue or my fingers I feel like I’m wearing a coat that doesn’t belong to me and I want to take it off.

Logically I really disagree with the notion that ‘high functioning’ and ‘low functioning’  autistic people are so fundamentally different that they have no common ground and should not advocate for one another, that high functioning autistic people never suffer in the way that low functioning autistic people do ( and I have issues with the high functioning and low functioning labels existing in the first place.) I will readily and vociferously argue against anyone who holds such a viewpoint.

And yet… there’s a part of me that feels that viewpoint is right and that I don’t have the right to share the label of autism with someone who is unable to speak, that I haven’t experienced life or suffering in a way that’s comparable to how they’ve experienced it.

I’ve experienced that feeling in the opposite direction too. There have been times when I’ve read the blogs of people who call themselves autistic and thought “Fuck you! How dare you call yourself autistic and claim that you’ve suffered as a result of your autism! You’re not as disabled as I am! You have a job, a partner and kids! I can only dream of having those things!”

The fact that I’ve experienced that thought in both directions-that I’ve felt that I’ve suffered both so much less and so much more than other people who are labeled autistic is perhaps a good argument for why we shouldn’t try to put autistic suffering or any suffering for that matter on some kind of ladder or hierarchy.

Today my mom’s friend told my mother that a friend of hers had a six-year-old grandson that was diagnosed with autism. She said that he flaps and she remembered that I flapped as a child too. A hint, a suggestion, a validation that other people see me as autistic, perhaps a nudge towards feeling comfortable thinking of and referring to myself as autistic.

My mother informed her friend that I still flap. There was a moment of awkward silence on the other end of the phone.

It was a moment where I could have either laughed or cried. I chose to laugh.