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.

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.

 

Please don’t talk about me like I’m not there

“Is she autistic?” the woman asked my mom’s friend as I walked by.  I suspected she was talking about me but I held out some small hope that she wasn’t.  When my mom’s friend started to reply “She’s my friend Cathy’s daughter and she- ” all doubt was removed. I didn’t hear the rest of what she said because I left the room. I had no desire to listen to  people discussing me and my diagnosis right in front of me as if I couldn’t hear or understand them. If they were going to talk about me as if I wasn’t in the room, then I was going to leave the room. I’m lucky that I had the ability to make an exit.

I’m not sure what tipped this woman off. Maybe my mom’s friend had been talking to her about me. Maybe it was my pacing and flapping that did it. The fact that she hadn’t heard me speak probably heightened her perception of me as seriously disabled. People who hear me speak or read my writing first tend to be surprised to find out that I’m disabled in any way. People who see me pacing and flapping first tend to be surprised to hear me speaking in complete sentences.

This isn’t the first time something like this has happened to me. I’ve had people respond to my flapping, pacing and stereotyped movements by asking another adult who’s with me why I’m doing that and if they’re watching me. They ask the other person that question when I’m within earshot and eyesight. I know this kind of thing happens to other disabled people too. This latest incident happened when I was on vacation. No one ever gets a vacation from their disability. It’s with you 24/7.

Too many people seem to think being autistic or being developmentally or physically disabled in some way is synonymous with being deaf or unable to understand verbal communication. When that belief causes them to talk about me as if I’m not there it makes me feel invisible, inferior and dehumanized. It is rude, insensitive and inconsiderate.

I suppose I could have let that woman know that I heard her and understood what she said. I suppose I could have told her she’d hurt my feelings. That may have challenged the notions she had about me and made her think twice about saying something like that in front of someone else she thought was autistic but it would have been embarrassing for all three of us. I prefer to avoid confrontations with strangers whenever possible.

People with special needs, disabilities or differences are by definition different from ‘typical’ people and require some special treatment but they are people as much as anyone else is. There are some needs, characteristics and feelings that are universal across all humanity.

Regardless of their age, status, neurotype, ability or disability, people universally want to be treated with respect. They want to feel heard and seen by others, to be accepted for who they are, to know that they matter.

There are exceptions to every rule and we aren’t always going to know the right way to deal with everyone but when it comes to human interaction the most categorical and fail-safe rule of all is the golden rule. Do unto others as you would have others do unto you. If you wouldn’t want someone talking about you as if you weren’t there when you’re fully present, don’t do that to anyone else.

Daily Prompt: Mystery

via Daily Prompt: Mystery

To many people I am a mystery. From an early age I was a mystery to my own parents. They tried very hard to solve me. As the detective, the chief witness, the prosecutor and the defense in my case, my mother searched for clues, she did her investigations, she questioned the suspects and she presented the evidence to the professionals. She asked for their help in solving the mystery of me.

I was a difficult case to crack.  There were times when it seemed the mystery of me was close to being solved and times when professionals declared they had solved the mystery but in the end the evidence just didn’t fit together to form a satisfying conclusion.  The poor fine motor and visual spatial skills were offset by the advanced verbal skills. My disinterest in my peers and my apparent inability to form relationships with them were contradicted by the warm, affectionate relationships I had with my family. My failure to pay attention to instructions seemed at odds with my great memory for certain details.  My hand flapping, my failure to make eye contact, my talking to myself, made me seem as though I was off in another world but I could also express myself in a way that showed I was engaged in this world.

My mother was the chief witness in my case but there were other witnesses as well-my other family members, my peers, my teachers, my babysitters. Some of them had convicted me of various crimes in their minds- Of being rude, mean, lazy, indifferent or spoiled-those were the most obvious answers to the mystery of me.  Yet my mom suspected that perhaps I was not guilty of those crimes by reason of disability. The type of disability remained a mystery.

I was sometimes called forth to testify in my own case and solve my own mystery but I remained a mystery even to myself and other people were a mystery to me. I could not tell you why I had no friends or why I flapped my hands. It was a mystery to me why other people did not flap their hands, how they managed to get through life without feeling the urge to do something that was so intrinsic to my being.  It was a mystery to me how my peers seemed to make friends as easily and naturally as I flapped my hands, while I remained friendless. I did not know what I was doing wrong or how I could make things right.

Finally, when I was twelve a doctor seemed to solve the mystery of me. He came up with a diagnosis for me that made sense and matched up with the majority of my symptoms. It was a a little known or recognized diagnosis so it’s no wonder the mystery took so long to solve.

Yet the mystery of me had not been fully solved and my case was far from closed. It was a mystery what had caused my diagnosis and what could be done to help me, why some with my diagnosis fared better than me and others fared worse. Then there were the symptoms of mine that didn’t seem to be accounted for by my diagnosis. Perhaps another diagnosis would fit me better but then there were criteria for that diagnosis that didn’t seem to fit me.

The truth was my mom had given birth to a human being, not a diagnosis and not a mystery novel. My creation had involved the hands of fate, genetics and whatever other forces are out there. I had not been meticulously crafted in the mind of a writer with a clear introduction, plot line and conclusion. I’ve spent my whole life feeling like a square peg in a round hole and there’s no reason to believe any diagnosis could peg me perfectly. I’m a perfectly imperfect person who’s rough around the edges.

The mystery has continued throughout my life and continues to this day. When I started making friends it was a mystery to me why these people liked me so much because years of blame and low self esteem had made me suspect I was inherently unlikable. It was a mystery to me why I made such self destructive decisions. It’s a mystery to me why romantic relationships, employment and independence seem to come so naturally to other people but they just haven’t happened for me.  It’s a mystery whether they ever will happen for me.

It’s a mystery why I can easily tell you the name of the dog of that kid who sat in front of me in seventh grade math class but I can’t remember the password I created yesterday.  It’s a mystery why I take some things so literally and fail to pick up on things that others grasp naturally yet I’m also capable of thinking deeply and symbolically, of picking up on things that others fail to grasp.

It’s a mystery to many people why I flap, pace and jump, why I am the way I am. I can see the look of puzzlement on their faces. Sometimes they ask me about it but even though I’m good with words, it’s a mystery I don’t know how to explain to them.

Some mysteries are not meant to be unraveled or solved. They are meant to be accommodated, accepted and appreciated. I am such a mystery.

The Cruelty of April

T.S. Elliot said that April is the cruelest month and he was right. The main reason I find it so cruel is because its weather patterns are so variable and erratic that it messes with your mind. One day it’s sunny and warm. You’re wearing shorts and it feels like spring has arrived. Then the next day it’s freezing and you’re wearing a winter coat.  The violets and cherry blossoms you’re surrounded by tell you it’s spring so you expect to be strolling thorough sunshine but instead you’re shivering in the wind. Then you’re forced to acknowledge that winter isn’t ready to give up it’s hold on the world just yet and it’s not truly spring.

Since April likes to fool people with its weather patterns, I guess it’s only appropriate that the 1st of April is April Fools day. I’ve become a bit of an April Fools Day grinch. I think some of the pranks that are intended to be funny are actually cruel. I’m sure those “I’m pregnant!” jokes are not appreciated by people who have recently experienced miscarriage, abortion or infertility. I think most April fools jokes are just lame and stupid. Perhaps I don’t have any room to be criticizing anyone else’s April fool joke since as a kid my idea of an April fools joke was pouring fish food on the eggs my brother was cooking for breakfast.

On April 1st I posted on Facebook that I was suspicious of everyone’s statuses today but I only encountered two jokes in my feed. One guy was grilling a baby manatee and another guy was getting penis reduction surgery.  I also encountered a meme that said April Fools Day was cancelled this year because no prank could possibly rival the ridiculous shit that’s really going on in the world. Seriously, I think that’s the main reason we didn’t see many April Fools Jokes this year.

April also brings with it the holidays of Easter and Passover. Since I have family members who are Christian and family members who are Jewish I get to celebrate both holidays.  Holidays can be joyous occasions but they can also be fraught with tension. On the first night of Passover someone who was sitting next to me during the Seder turned to me and said “Does it bother you to hear yelling coming from all sides of the table like this? It bothers me.” Hopefully my Easter family gathering will be more civil. Not that I’m complaining about the Seder. The delicious food made the bickering worth it.

The middle of April brings us Tax Day.  Ah, taxes. They and death are the only thing that can be guaranteed in life. It’s hard to say which is more unwelcome.

The other reason I find April to be a cruel month is because its Autism Awareness Month and it’s prom month, which means there are articles circulating around the internet about high school students who were kind enough to take a disabled kid to prom. I’m sure it’s obvious to everyone why I would consider crappy weather, lame pranks, family feuds and taxes to be cruel aspects of April.  I’m sure it’s less obvious why I would find Autism Awareness Month and articles about taking the disabled kid to prom cruel. In fact I’m sure many people are baffled as to why I would find those things cruel because they seem kind and wonderful.

Those things do tend to give able bodied,neurotypical , “normal” people warm fuzzy feelings and the sense that they are helping those who are less fortunate but most disabled people just find them hurtful and insulting. They essentially boil down to slacktivism and inspiration porn. I’ve ranted before on this blog about how much I hate both of those things.

If you’re going to use autism awareness month to actually research autism, to listen to the perspectives of people who are actually autistic, to contribute your time or money towards organizations that have the support of people who are actually autistic, that work towards securing support, employment and acceptance for people on the autism spectrum, then good for you. You are making a positive difference in the lives of autistic people.

That’s not what most people do to honor autism awareness month though. Most people light their Facebook profiles up blue and post a few autism facts accompanied by a picture of a puzzle piece.  These facts come from Autism Speaks, an organization that is widely feared and hated by people who are actually autistic. They paint autism as some mysterious, horrible, devastating disease that must be eradicated. They suggest that autistic people can best be helped by being cured or being taught to “act neurotypical.”

Well, many autistic people, especially the ones who are using Facebook, do not want a cure and their goal in life is not to pass for neurotypical. What they want is to be accepted for who they are and to have their special needs accommodated. You are not helping these people by posting blue lights and puzzle pieces. By perpetuating the idea that they have a horrible disease that must be cured you are harming them.

Some people do not see autism as a disease or a disability but as a different way of being. Some autistic people see autism as an essential part of their identity that they would’t want to change.  Imagine how you would feel if you were constantly told that your way of being was tragic, abnormal, problematic, must be done away with.

What’s so aggravating about autism awareness month is that for the most part it is clearly not geared towards autistic people themselves but towards their loved ones, their caregivers. those who work with them, those “normal” people who supposedly need to be more aware of them.  Autistic people are silenced, discounted, made to feel invisible by a campaign that is supposed to help them. They do not need your blue lights, your puzzle pieces or your “awareness.” They need your support, your understanding and your acceptance.

As for those heartwarming, inspirational news stories about the popular high school kid who was kind enough to take that disabled kid to prom, I do not find them heartwarming or inspirational. I find them patronizing and nauseating.

That Kendall Jenner Pepsi ad was immediately criticized as being tone deaf and insensitive. Within 24 hours that ad had been pulled. Yet those tone deaf insensitive  articles that hail people as heroes for treating the disabled with basic human decency appear over and over again year after year.

Once again, those articles are clearly not geared towards disabled people. The disabled person is just an object used to make the “normal” people feel all warm and fuzzy. The fact that a popular jock went to prom with the disabled kid is touted as an example of human kindness and goodness.

The implication is that that popular kid made a huge sacrifice by taking his disabled classmate to prom, that he did something really out of the ordinary, that not many other people would be willing to do that, that he made that disabled kid’s night really special, gave her something she’s never experienced before. The implication is that the disabled girl had so much fun at prom and while the popular kid didn’t have as much fun at prom as he would have if he’d taken a “normal” person, the feelings of gratification he got out of doing something kind for the disabled girl made it all worth it.

If we were talking about the popular football player taking the unpopular band geek to prom, no one would dream of writing an article about it. People would realize how incredibly humiliating it would be to that band geek to be publicly turned in to an object of pity.  Yet turn that band geek in to a a girl with Down Syndrome and it becomes okay to write an article like that.

The implication is that the disabled person doesn’t have enough cognitive awareness to realize that they’re being turned in to an object of pity, that they won’t Google themselves and feel embarrassed by the way in which they are portrayed. The implication is that they’re just so full of gratitude towards that popular kid for giving them a chance to escape their sad disabled life for one night and get to experience what normal people experience, that nothing else matters.

It makes me sad and angry that so many people need it explained to them why articles like that are so offensive.

On a lighter note, just like April is a cruel month, April is a cruel giraffe. Just like the month of April messes with your mind by giving you false hopes and expectations so does April the giraffe. I’m a celebrity baby names fanatic so I’m used to impatiently waiting for a seeming eternity for celebrities to give birth (and often longer after that for them to reveal the name) but this giraffe is worse than any human celebrity I’ve baby watched. She’s worse than Jessica Simpson and Kate Middleton combined.

On February 23rd live cams were set up and it was said that she would give birth any minute. It’s now almost April 13th and she still hasn’t given birth. I’m starting to wonder if something fishy is going on. Is she not pregnant at all? Is this some media stunt? An attempt by the Trump administration to distract us from their scandals?  I don’t know. I just know that April is cruel.

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