The right way to do it

So in my last post, I talked a little about inspiration porn and why patronizing videos like the basketball one with Mitchell Marcus aren’t okay. I told you a story about how I felt when I realized someone was being patronizing or giving me a chance, not because I deserved it or was good, but essentially because I am disabled.

For reasons I won’t get into right now, I left the school I attended for middle school and 9th grade and transferred to a similar private Christian school. Upon entering, my parents and grandparents disclosed that I had a learning disability. At the time, I was diagnosed with ADHD, but I had other processing difficulties as well.

Well, one of the choices besides an elective that you could make was in regards to your Bible class. Some kids chose a class that read “In His Steps”, some chose a class called “Experiencing God”. There were many good choices, but I knew immediately which one I wanted. I wanted to be in the Bible Quiz class.

For those of you unfamiliar, Bible Quiz is a class where the students memorize a certain section of the Bible. Sometimes it will be an entire book, sometimes several smaller books. Once memorized, team members would compete against other schools and churches to answer questions. I thought, this is perfect. I want to do this. I signed up, and…. I was denied. It wasn’t until after my junior year that I found out why. They assumed that because I was learning disabled, I was incapable of memorization and would fail. Little did they know that rote memorization is a talent I do have, and I’m not convinced it isn’t because I’m Autistic. Take that, curebie folks!

I didn’t fight it. I didn’t get to do it that year. But i was going to prove them wrong. I was going to show them that I could do it. So over the summer, I memorized the next year’s material. Well, a good portion, anyhow, and far more than most of the other team members. They let me into the class in the fall.

I remained a slightly mediocre teammate, capable of doing the work but not doing anything extraordinary. Until Christmas break. Now, there is a competition immediately following Christmas – it’s an invitational tournament in Athens, Georgia. My team met one time before leaving, and the teams had been chosen already (team A contained the best players and team B contained lesser but still good members). I recall my coaches being extraordinarily disappointed that they had already chosen, because they discovered at that meeting that not only had I memorized the next chapters, but I’d memorized the rest of the book, and the rest of the material (so Hebrews and I and II Peter).

There is a rule in Bible Quiz that once a person answers 6 questions, they quiz out, which means they are done competing and must wait until the next round to rejoin their team. It’s an honor, but it also makes things a bit more fair and a team player sort of “sport”, where everyone has the chance to answer, not just the exceptional. I was made team captain of team B and during that competition, I quizzed out nearly every round. Despite not winning the overall competition, I won an individual award for highest individual score.

There’s more to the story, and there’s an issue regarding fairness that isn’t disability related, and I may one day bring this up. But this one here, the one where I exceeded expectations, is an example of how I was eventually given a chance like everyone else. I wasn’t special. They didn’t put me in the game and make me team captain because I was disabled and they were being nice. They put me in because I worked hard and was the best person for the job. They didn’t think I could do it, I proved them wrong, and I was given more chances to show them that I could lead.

This is the difference between inspiration porn and treating people fairly. Give accommodations, absolutely. But do not pat yourself on the back for giving someone who might not deserve it a chance simply because you were being nice to a disabled person.

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You’re NOT helping

I am sick to my stomach tonight. 

I know. I’m making a big deal out of nothing again, right?

Well.

The issue is this video. In it, a developmentally disabled young man, the manager of his school’s basketball team, is put into the game in the last few moments.  His teammates are trying to pass him the ball, but he’s missing, every time.  Then the opposing team, with the score pretty much locked in, passes him the ball and he scores.

Parents are hailing it as phenomenal and “such an inspiration”.

It makes me want to throw up.

It reeks of patronization.  

It reminds me of too many instances where people were nice to me, because I was weird, because I was disabled.  Or maybe they were an assigned friend.  It would be years before I discovered that many of my childhood friends weren’t actually friends at all.  

Listen, I’m total crap at sports.  I didn’t play sports, and the only thing that ever came close to sports was in 8th grade, when I tried out to be a cheerleader.  This is actually pretty relevant, so let me tell you the story.

I thought it was competitive.  I was told from the very beginning that only a certain number of girls would get in.  It was a two week long cheerleading day camp, and we worked hard.  We bonded with the other girls, we worked out, we came up with cheers.  All in all, it was hard work, and I wanted to succeed.  On the final day, I had my routine down, or so I thought.  I completely bombed.  I knew I had.  And yet, my teammates told me I did fabulously.

And in the end, you know what happened?

I got in. 

I wasn’t good.  Not one bit.  I had almost no coordination.  I can dance to a beat, but I’m not flexible, and I was really too chubby even at 13 for the look of that particular squad.  I still got in.

And now, it’s hard to trust.  

When someone tells me that something I’ve done is good, I don’t believe them. Even when a lot of people tell me I’m good at something, I have a difficult time believing them.  Because 19 years ago, I was lied to repeatedly.  I was told I was good.  It wouldn’t have happened if I weren’t disabled.

I get the point behind this sort of “inspirational” video.  I understand.  That we want to believe that humans are decent, and do things for others that are kind for no reason except to help our fellow man is a good thing.  I know that the intent behind this video is good.  But intent is not magic, and therefore, I’m hurt.  I’m hurt that I once again have to defend my stance here, that I once again have to explain why I’m not here to be your inspiration   That I don’t live my life so you can be inspired.  That other people displaying the basic level of human decency is what should be expected, and is not something to be praised. 

I’m sorry this isn’t as articulate as other people’s posts have been (links one, two, and three) . I’m too upset that I’m having to do this again and again and again.  Sometimes advocating for myself, for my kids, for other Autistics, well, it’s tiring. Explaining why people trying to do a good thing are actually part of the problem is neverending. Forgive me for getting tired sometimes.

 

Neurodivergence on television

I’ve never really written a fandom post before on this blog, so I was surprised to find that for the first time, my blog was actually coming up on people’s searches yesterday.  From “how long until season 3” to “a time when Sherlock was kind to Watson”, the results have been amusing. 

In any case, today I want to expand on yesterday’s post just a little bit.  I want to talk about media representation and why it matters.  Growing up, I found it difficult to relate to many of the characters I found on screen.  I was captivated by their stories, but I really didn’t find anyone like me.  That doesn’t even necessarily mean that they needed to be Autistic.  Any neurodivergent person would have been fine; actually, most people who deviate from the norm would have been fine too.  But I found far too many people who were normal, happy, solve the problem in 30 minutes sort of people.  If there was an episode of a television show about someone different, it was a “special” episode, to be dealt with and then never mentioned again. 

Things have changed a lot in the last few years.  I can name for you several book personas that I identified with (starting in childhood), but until a few years ago, I was not able to find a television or movie character that I could identify with.  But let me count the ones I can name (though to be honest, I’ve not seen every single one of these, but I feel confident mentioning some of these based on the word of my Autistic Tumblr friends).

  • Abed from Community.  Julia Bascom, author of “Quiet Hands”, writes a very good piece about him here (though she and I are certainly not on the same page with regard to Sherlock, which is absolutely fine). I’ve seen a few episodes, and he’s by far the most blatantly autistic adult on TV that I know of. 
  • Sherlock, in many different adaptations.  I started out watching Elementary thinking that this Sherlock was more ADHD than autistic, but since then, I have seen several autistic traits that make me think differently. 
  • Max from Parenthood.  Max is a preteen who is autistic, and that is established with great certainty in episode 3, when he is diagnosed with Asperger’s.  There are a few things that bother me about him, but it’s more about how his parents react, and how some things are blamed on his autism rather than telling him “no, that isn’t acceptable.”  I think that the show is fairly realistic, though.  I definitely disliked Max not knowing about his diagnosis for a long while.  He was eight, I believe, when his character was introduced, and just recently entered middle school, I suppose at age twelve.  It was only around age ten or so that he was told of his diagnosis.  I compared that to my own kids and I thought, “well, they already know.”  I think that the difference is that Max was quite a bit older when he was diagnosed.  Still, he went into several doctors’ offices, therapists, etc. to discover what made things difficult for him.  That would have been the perfect time to reveal his diagnosis.  The show writers are doing a decent job with Max now that he’s a bit older.  The parents, Adam and Kristina, are definitely reacting how many parents who are fed the tragedy model of autism would react.  It’s very realistic. 
  • Temperence Brennan from Bones.  I’ll be honest that I’ve not seen very many episodes of this show, but she certainly does have an extraordinarily sensitive sensory system, and there’s a lot of social gaffes that her friends need to help her through. 
  • Sheldon Cooper from The Big Bang Theory.  Yes, I realize that the creator claims that he does not fall on the autism spectrum.  However, this is the same person who wrote Two and a half men.  I don’t know that I really trust Chuck Lorre’s idea of what autism is.  There are more and more instances where I think that Sheldon is definitely a lot like me.  It’s quite stereotypical that he be a scientist, of course, but stereotypical doesn’t mean wrong. He’s very much into routine, and gets upset when that routine is altered. 
  • Spencer Reid from Criminal Minds.  I admit that I have not watched this show, but I believe within the last season, this has been accepted as canonically correct.  I don’t know if they use the word “Asperger’s”, but according to friends who are fans of the show, he certeainly is on the spectrum.
  • Gary from Alphas.  I know absolutely nothing about this show, but thought it was worth mentioning.
  • Hank from Parenthood.  I don’t know if very many people are talking about this.  I know that my best friend and I have discussed this at length, that Sarah Braverman’s love interest in last season of Parenthood is Hank, a photographer, who immediately bonds with Max, who he later refers to as “the kid who doesn’t talk to people”.  In a conversation with Sarah in one of the final episodes of this past season, he talks about how eye contact is difficult, and people are difficult, and he even gives Max a gift of a camera that you look down into so you don’t have to look into people’s eyes.  He’s in his 40’s, so it’s unlikely that he would be official diagnosed, but it certainly makes a lot of sense. 
  • JJ from Skins UK.  Oh, this is probably my absolute favorite character who is diagnosed as autistic.  Because he’s a teenager and he has a lot of self-loathing, and a therapist who keeps giving him more pills to take, and it’s very heartbreaking.  But his friends, though a bit problematic in other ways, are very good to him.  And they understand and don’t treat him like a pariah.  I know, I’m giving out the “basic standard of human decency” award here, but honestly, most of the “friends” that I have had were there because they were bribed, or because they were assigned to be my friends, not because they really were.  It’s good to see a character on TV who has struggles with accepting himself, and not feeling self-loathing about his diagnosis, but who can have fun and have friends and care about people.
  • Jake from Touch.  This one is … debatable? His diagnosis is refuted as “inconclusive” by his father in the first episode.  But he is nonverbal, and sees patterns, and well, is your stereotypical nonverbal autistic kid, I think.  Things do eventually change, however, and he becomes much more than the “disabled kid with superpowers”.  It’s a fascinating show, and sometimes, you really do forget that he is (probably) autistic.

I’m certain there are more, particularly in literature. I can list some other neurodivergent characters, like Ramona Quimby, Luna Lovegood and Anne Shirley — characters, specifically female characters who were “weird” but who were oh so much like me. But for now this is a good list.  You know what would make it better? To have more characters that are nonspeaking, or who don’t fit neatly into the “Asperger’s” category.  How about an autistic character who is part of a gender and/or sexual minority? One day.  I want us to get there one day. 

Obsessions, “special interests”, and BBC Sherlock

When you are neurotypical, people call the things you love “obsessions” and they think it’s cute.  When you are Autistic, people medicalize your passions and call them “special interests”.  And when you talk about your special interests, you are “infodumping”.  I know plenty of neurotypical people who do this, who infodump about their favorite character on TV and why they love them.  But somehow, it’s a problem when I do it.  When I infodump, it’s a “symptom” of my autism, not just me sharing something I love.  I suppose the difference lies in the fact that oftentimes, I can’t read when someone is disinterested, so I keep talking and talking until they’re frustrated with me and downright bored.  I’m sorry for that, but unless you tell me, I don’t automatically pick up on it most of the time.

So I’m going to talk about a few of my favorites – characters, TV shows, etc. in media and why I find them amazing. I was planning on this being just one post, but well, I infodumped and this became quite longer than I meant it to be.

Sherlock Holmes.  This particularly relates to the BBC version of Sherlock (which, hint, hint, is on Netflix, and you should watch if you haven’t already).  I am also enjoying Elementary, the CBS drama with Jonny Lee Miller and Lucy Liu and think it’s fabulous in a way that other adaptations are not.  But Sherlock is what drew me in to Sherlock Holmes — a love that had been pretty stagnant for a good decade and a half, when I last picked up the books.  But Sherlock was a new, modern day adaptation and you know what? Even though it was easy to see myself and the non-neurotypical ways of Sherlock Holmes’ brain in every adaptation, even from the original stories, this was positively glaring. There was absolutely no way for me to watch BBC Sherlock and not see myself reflected. Later, when I read articles about how Benedict Cumberbatch deliberately played Sherlock as  “slightly autistic, perhaps a bit sociopathic” (the latter a hugely problematic term, but a redeeming one when the term is used somewhat sarcastically in the show itself), I could not contain my glee.

(A side note: Benedict himself is not immune to being ableist, which I want to lay out here at the outset so no one thinks that I’ve idolized any of the actors here.  Please read here for more information regarding Benedict’s foot in mouth/ableist commentary, and be warned that profanity is abundant at the link, if that sort of thing bothers you.)  

I saw myself on screen, in Sherlock’s movements, his social gaffes (oh, poor Molly Hooper; I hurt for her, but know that I’ve been exactly that oblivious more than once), his sharp, too-blunt tongue, and simply, how his brain works.  I still regard the second episode of the second season, The Hounds of Baskerville, to be by far my favorite episode for a number of reasons.  First, though this segment of his acting was highly criticized (by mostly NT fans, I’m sure), Sherlock has a meltdown when he isn’t sure how to deal with what he’s seeing vs. what he knows to be true.  Fans criticized him for being too emotional for Sherlock, and I think if you view him from an NT perspective, I can see where they’re coming from. But this was every bit a panic attack or a meltdown (I see it as the latter, but if you see him as differently neuroatypical, as in not autistic but still not NT, it could be classified as a panic attack), and I think it’s very important to note that it’s a very good representation of how non-autistic people sometimes react to us when we are in the middle of a meltdown.  Sherlock sets boundaries, and John Watson tramples all over them. I have gone as far as to call him a “bad ally” and have been fairly demonized in the Sherlock fandom because of that.  But I digress.  In addition to that instance, this episode brought us as close to a canonical diagnosis as I think we’ll ever get.  Sherlock reacts rather oddly to seeing Lestrade at Baskerville, and to me, that seems as close to face blindness as we’re going to get.  I don’t think Sherlock is face blind by any means, but seeing someone out of context could be somewhat startling regardless.  Sherlock reacts by calling Lestrade his “handler” (which could certainly be code for “caretaker” or someone that is sent to watch over him). A few moments later, the following dialogue (transcript source here) occurs between John and Lestrade when they believe Sherlock to be out of earshot.

JOHN: You know he’s actually pleased you’re here?
(Greg throws him a disbelieving look.)
JOHN: Secretly pleased.
LESTRADE: Is he? That’s nice(!) I suppose he likes having all the same faces back together. Appeals to his … his …
(He stops and searches for the right word. John provides an appropriate suggestion.)
JOHN: … Asperger’s?

There were mixed reactions to this particular revelation.  I myself positively screeched in excitement when the word was first uttered. Later, when I thought back on it, I sort of felt a little sick to my stomach.  Not because of the word.  There is nothing to be feared about the word Asperger’s or autism for that matter.  It isn’t even that the media seems to get things wrong regarding the diagnosis.  The problem lies in who said the word.  That character was John Watson.

John Watson should know better.  John Watson is a doctor, and should understand to respect his friend’s privacy.  He refers to Sherlock as his friend several times throughout the series, and Sherlock eventually in this particular episode, confirms that John is his only friend.  John and Lestrade are literally talking about Sherlock behind his back.  Everyone knows he’s different.  Sally Donovan, as much as I like her and thinks she has potential as a character (though we will unfortunately probably not see her character receive the treatment she deserves, which is not to be villainized) from the first moment we’re introduced to her calls Sherlock “freak”.  He knows he’s different, and so does everyone else.  When I thought about the conversation between John and Lestrade, my heart sunk.  Because it felt like being outed.  It felt like someone saying, “oh by the way, he has this diagnosis”, which shouldn’t be revealed to other people by someone else, but by the person who is most affected.

I would also like to talk about how Sherlock is treated by the other characters at large.  There’s Mycroft, who is his older brother, but who, to me, acts more like a parent.  We don’t know their backstory, but I suspect he behaved as more of a parent than either of their actual parents.  And as someone who is only seven years older than Sherlock, I can’t imagine their childhood was at all very pretty.  I believe that Sherlock probably was forced to behave in a neurotypical way, even though he was clearly anything but.  Privileged, of course, and wealthy, yes, but certainly that doesn’t erase the way he was likely treated.  Lestrade, I think, is more of a father than any of the characters, and behaves in a guiding Sherlock onto the right path sort of way.  I dislike the following line, but I think it paints a good picture of how Lestrade sees him:

“Sherlock Holmes is a great man.  And one day, if we’re very very lucky, he might even be a good one.”‘

John treats him alternately like he is brilliant and perfect and like he is terrible for some of the things he says.  I think as their friendship progresses by the end of season 2, he is much more understanding and even guides him socially (which can definitely be seen at the beginning of The Reichenbach Fall, when he says things like “say thank you” and the like, when Sherlock is bemused by a gift by the fact that he doesn’t, in fact, wear cufflinks). But we have the fireplace scene in Hounds, where John oversteps his boundaries.  Sherlock repeats “leave me alone” several times, and John blatantly ignores him, and ignores all the signs that Sherlock is afraid, and on the verge of a panic attack (or meltdown, whichever you prefer).  He’s shaking, sweating,eyes watering, lip quivering, breathing hard, trying to calm himself in any way possible.  His hand trembles with a glass of something (we’re meant to assume alcohol, I believe) in his hand, And John tells him to “take it easy”, calls him “Spock”, and eventually, when Sherlock says “I don’t have friends”, John says, “I wonder why”.  And the next morning, when Sherlock apologizes, we’re supposed to accept that as some sort of good thing? Instead of being called on his slut shaming behavior toward Sally in the first episode, or his blatant disregard for police procedures, or the cruel things he says intentionally, we’re supposed to think it’s a victory that Sherlock apologizes for lashing out in the middle of a meltdown.  Well, all right then.

There is talk in fandom that John Watson makes Sherlock Holmes “more human”.  The final words that John Watson says to Sherlock Holmes before his faceoff with Moriarty on the rooftop is “You machine”.  There are graphics about how Sherlock Holmes is the mind and John Watson is the heart.  And I get how it’s easy to do.  John Watson is quasi-neurotypical.  The only mention of his PTSD is in episode one, and then it’s never spoken of again.  John is understanding, and though he’s strong, he is also fairly good with social graces.  He smooths things over, makes things easier for Sherlock.  He speaks to Mycroft, Mrs. Hudson, and Lestrade about Sherlock, trying to make sure things are okay for him.  I understand what it means to have a friend like that, one who is as much on your side as a non-autistic friend can be.  I don’t expect John Watson to be perfect.  I really don’t.  But I want the fandom at large to recognize its treatment of John Watson as some beacon of light who makes Sherlock more human, because that phrase is so, so damaging to autistic individuals.  Sherlock is expected to apologize for being himself.  Not for horrible actions – no, that’s not what he’s criticized for by the other characters.  No one has, thus far, talked about how horrible what he did to John in another scene from Hounds was.  It was horrible, and sneaky and abusive, and no one is talking about it.  But everyone focuses on “I don’t have friends” and how much he hurt John’s feelings.  Funny, no one seems to be so reactive when Sebastian Wilkes says “We hated him” to John in The Blind Banker, referencing how he and his classmates regarded Sherlock.  This is said in Sherlock’s presence, as though he’s not even there.  Here is a good post about legitimate criticism vs. criticism for neurology.

Sherlock Holmes, as a character, is human.  He does not need to prove it by acting neurotypical.  He doesn’t need John to help soften his heart and make him more emotional, and have emotional = more human.  And let me be frank – Sherlock is plenty emotional.  I wonder when people say that he’s entirely cold and emotionless what show they’re watching, because the one I’m watching, and have watched dozens of times, depicts Sherlock as quite emotional, but someone who hides it well.

I relate to Sherlock Holmes.

I can relate to the mind palace idea, and have done something like it myself.

I have an eidetic memory to some extent, and on bad days, my cognitive function is at least intact enough that if I can’t remember what I’m trying to remember, at the very least, I know where to find the information.  I know what the page looked like where I read it.  I remember some association to where it is, even if it’s not something I’ll immediately be able to find.

Sherlock (or perhaps, just Benedict) stims just the way I do.

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I often ask what Sherlock asks his brother in A Scandal in Belgravia:  “Do you ever wonder if there’s something wrong with us?”

It is difficult to be an Autistic fan of Sherlock.  That isn’t because it’s difficult to relate to him, but it is difficult to hear some of the things fans say.  And then we have things like this, where a non-autistic panel of Sherlock fans, and a psychologist proclaim the following:

And he doesn’t have Asperger’s by the way, he can read people better than anyone else, and–

People who have Asperger’s can’t read social cues and have trouble reading people’s emotions. When Holmes comes into a room he can tell you who’s sleeping with whom for how long, and who likes whom and who doesn’t like whom and who’s lying and who’s not, I mean, who is a better reader of faces and of people than Sherlock Holmes? I don’t know of any.

Reading people is far different from deducing facts from someone’s appearance.

Melinda: People on that spectrum wouldn’t be able to see Helen Stoner [Speckled Band] and just be immediately calm her down, they would exude this sort of like, “I am sympathetic to your cause I’m gonna take care of this.”

Maria: Yes! And, I mean, also note how kind he is, he never takes payment from people who can’t afford it, he’s really, even though he says he only takes the cases that challenge him, he’ll take a case when people appeal to him on a human level. And he’s the first one to give people a second chance and to be more sympathetic when Watson’s like “whoa, that guy’s a bastard, did you hear how he talked about her?” and Holmes is like “cut him some slack, Watson.”

So, there you have it. Autistic people can’t be kind.  We can’t be sympathetic.  Because a psychologist said so.  Because one of the Baker Street Babes said so.  The owners of said podcast and I exchanged some inbox messages on Tumblr, and in the end, I ended up not posting or responding to most of them, in part, because they did just what they criticized in their Hounds of Baskerville podcast – they outed one of the people associated with them as being “on the spectrum”.  It seemed a bit too convenient for me, and really really crappy, as I’ve said before.  It also reminds me of Kassiane’s post here. IDing as autistic or on the spectrum is not a get out of jail free card, and I find it far too convenient that the opinions of Autistic folks, in this case, Autistic fans of Sherlock, are dismissed so easily by just one phrase: “well, I’m autistic too”, as though that somehow erases the way that folks treat the character of Sherlock, as though he’s some “problem” to be handled.  As though there’s no way he can be autistic because he’s “too kind” and “has emotions”.  This is damaging to real life people.

When you talk about Sherlock not being human, or being a machine, or any variation thereof, you are dehumanizing people who possess a similar neurology.  Who are abused.  Told that we have no emotions and it’s okay to do x, y, and z therapy to us because we can’t feel anything anyways.  Here are some more thoughts on dehumanization of Autistic people.  Here, here, here (Trigger warnings on all three links for dehumanization, institutionalization, abuse, murder of disabled people).  People often say “it’s just fiction.”  Nothing is “just fiction.”  Representation matters, and when we talk about a character who many many Autistic people identify with a character as being just like them,especially when there are very few just like them characters on television, dismissing that is harmful.  Here is a really good post (dissecting The Baker Street Babes issue far better than I did) about just that.

I will write another post about Elementary because it is very different from Sherlock and I don’t think that the two should be compared.  But I did want to touch on one thing.  There are many people who call Jonny Lee Miller’s Sherlock “more human” or “more relatable” and that’s not cool.  There have been a few posts on Tumblr about that.  Here, here and here.  Thankfully, it seems like the Elementary fandom is far more understanding and their responses to “hey, that’s not cool” tend to be “I’m so sorry; I didn’t realize how harmful that is” rather than the reactions of the Sherlock fandom.

I think that might be enough infodumping for one day.  I leave you with what I consider to be by far the best series regarding Sherlock on the internet, and that’s The Slumber of Feelings: A study of autism and BBC Sherlock, which was written mostly before series 2 even aired, but hits every point about how I feel about BBC Sherlock and the fact that he is, indeed, very much Autistic.

 

Autistic people should…

Today is flash blog day! Autistic people like myself were asked to complete the phrase “autistic people should…” This is in response to the current Google autocomplete searches for those phrases, which are, to be kind, problematic at best, and downright triggering at worst.

So here’s mine.

Autistic people should exist.

That seems really simple and obvious, doesn’t it? I mean, I’m sure even now, there are some of you scoffing at the idea that anyone would wish that we didn’t exist.

But it happens.

It happens too much.

When we hear talk of a cure for autism, we don’t hear “help treat the more distressing symptoms that often accompany autism (but may not be linked at all)”. We hear that you don’t want people like us to exist. You advocate for research, but you leave us out of the conversation and we are erased. Autism isn’t something that exists; it’s a thing that happens to our parents.

I refuse to accept that.

I exist.

My children exist.

My friends exist.

Autistic people around the world exist.

And you are barking up the wrong tree if you think I’m going to sit back and let you wish people like me out of existence. You may have the power, but I have a loud voice when things matter. I will make my voice heard.

I deserve to exist.

I deserve to be respected for who I am.

I deserve to not hear ableist rhetoric multiple times a day about how “tragic” my life supposedly is – or better yet, how “tragic” my parents’lives are because I exist.

My neurology is not a tragedy.

I am a mother, an educator, a writer, a singer…l am all of those things. But I’m also Autistic, with a capital A.

I exist.

I deserve to exist.

Autistic people should exist.

Simple, no?

Doing “nothing”

I wrote something on my personal Facebook page the other day about how sometimes, the best thing to do is nothing, that sometimes things have ways of working themselves out. Too many times, parents are urged to do something about their child being autistic. Your kid stims, so you employ an ABA therapist to stop it. Your kid holds their pencil the wrong way, they’re too sensitive to certain fabrics and textures, and you put them through occupational therapy. They can’t speak at age 2, so you put them through speech therapy. I am not saying all of these are bad. I’m not. It just seems to me like people tend to go overboard. What four year old actually needs 40 hours of ABA coupled with both OT and speech with perhaps a dash of physical therapy added in as necessary? What are we trying to accomplish here? Are we aiming to help our kids navigate the world the best way they can or are we pushing them to be less autistic?

So many times, I see this therapy or that get the credit for a delayed developmental milestone. My daughter’s language improved and my parents want to credit the ABA, while I want to say, well, perhaps, but maybe it was our instinct to label everything in the house and treat her like a person who understands what we’re saying – in other words, presuming competence. I’ve heard other people talk about their success with gfcf diets and how that caused their child to start talking. I am not saying that it has no impact, because it might. But when are we going to get it into our heads that autism is a developmental disability and as such, our growth and development is delayed but not stagnant, and sometimes, it just happens naturally?

My son had the same level of speech issues as my daughter, but we didn’t put him through tons of speech therapy like we did with her. He managed to begin speaking on his own and while he has a few issues with language, he can speak well, express his thoughts and be understood by most. My kids are different and I’m not saying that I think that the same thing would have definitely happened with my daughter. What I am saying is that maybe we need to chill out just a bit, let them be kids, and don’t worry so much about doing every therapy there is.

Our goal should always be to do what is best to help our child succeed. That doesn’t need to be some extreme 45 hours a week therapy or intensive program. Sometimes, it’s just meeting them where they are, understanding what exactly they need to handle the world, and pushing for them to have the accommodations they need.

Most of all, if you can, ask them! My son will tell you that he can think better when he’s on medication and he’s less frustrated. My daughter is not very verbal but can absolutely let you know when something is bad. She used to have OT, but doesn’t anymore because it was too much. And that’s fine. The one thing that would have prevented the harmful, curable style “reprogramming your brain” therapy that I went through in childhood/my early teen years was if someone had said, “how do you feel about this?”

Think about your intentions.

Ask the autistic person in your life how it makes them feel.

It matters.

To the parents of newly diagnosed autistics

I’ve wanted to write something, anything, to the parents of those newly diagnosed for quite awhile. I feel like there are many well-intentioned parents who want to do what’s right for their kids and above all, want to see them succeed, but just don’t have the right information or tools in order to do this. This isn’t the parents’ fault. This is the fault of “professionals” and the media and how we talk about autism.

Let me explain. It has now been about four years since my daughter was diagnosed with autism, and a good 5 1/2 years since we first knew she was autistic (ahem, not that something was “wrong”, but that she had developmental differences that made us investigate further). At the time, autism was an unknown to us. Sure, I’d heard the word spoken as a teenager and young adult, but I had no clue what it meant. Even as I began to google information about the disorder, I still lacked information. There were statistics (then 1 in 150) and signs and symptoms, but no information on prognosis or what happened as autistic people grew. There were horror stories and even now, the first few searches for the word “autism” lead to Autism Speaks’ website. Autism Speaks as an organization was new, though the ideas were not. The information was grim and bleak, and let me tell you, I was afraid. What would my daughter’s future look like? Would she have a future? The first two books I read about autism were by JennyMcCarthy and Kim Stagliano, and boy, was that a mistake. I knew that what they were telling me was wrong, as a college educated person who once considered a biology major.

But then, in the midst of all this awful rhetoric about how tragic my daughter’s life would be, I realized something. I realized that she and I were not so different. Oh, sure, her ability to communicate verbally was not anywhere near mine. But somehow, I managed to figure out what she wanted. I realized that though I myself had been given various diagnoses in my life (learning disabilities, ADHD, dyslexia, etc), none had truly fit before. I did a bit more investigation, and realized that if my self evaluation was correct, I was autistic. And if I was, well, my hope for my child wasn’t completely lost, because despite having these challenges, I had managed to do quite a bit in my life, and who was I, who was anyone to say “she’ll never speak, she’ll never live on her own” etc at three years old? We certainly don’t make such grand statements to parents of neurotypical children, do we?

It was around this time that the Temple Grandin movie aired, and I watched with rapt attention someone like me grace the screen. Oh, no, I’m certainly no scientist, but I could relate to the struggles of going off to college and being different, and being unable to handle certain things deemed simple by neurotypical society, but which were devastatingly difficult for me. The movie ended and I googled her, never having heard anything about her, and the more I watched her videos on YouTube, the more I saw myself, my own movements and mannerisms and I clung to that feeling of someone like me. I began googling more about autistic adults, and while there wasn’t much, I was certainly finding at least a few pieces that struck a chord with me. I read Jim Sinclair’s “Don’t Mourn for Us”, and a few other pieces by autistic adults. I discovered for the first time why Autism Speaks was not helping autistic people, and why “lighting it up blue” is a pile of crap. I became uncomfortable with the idea of “awareness” and I hoped for acceptance, understanding and inclusion.

So what would I say to parents of the newly diagnosed? This is what I would say.

It is not hopeless.An autism diagnosis is not a death sentence. Autism did not take your child away like a thief in the night. Your child, the one you brought with you into that important appointment, perhaps one you’ve waited a year or more to complete, is the same child you are leaving with. And you know what? They haven’t changed. You simply possess more information that you did not have before.

Doctors are not always right.This doesn’t mean that the diagnosis itself is wrong (though it could be; I personally was diagnosed with several disorders before doctors realized that autism fit better than any of those). What this means is that believe it or not, doctors do not always know what autism is like, what is helpful and what is not when it comes to autism. There’s been a push to promote ABA therapy. Let me tell you this: while ABA can be used as a tool to help your child acquire new skills, it can also be quite dangerous if done using the Lovaas protocol. An important read regarding this can be found here, “The Cost of Compliance is Unreasonable”. It is not essential that you follow recommendations for every therapy. Too often, parents wonder why their kids are cranky or are exhibiting new (and to them, “bad”) behavior. Logically, they think they’re doing the right thing, but 40 hours of intensive therapy, plus any speech, OT, or PT (which could add another 3-6 hours a week) is an enormous amount of time for any kid, especially a four year old.

Autistic people know more about autism than many “professionals”. There are many ways of finding autistic adults, some of whom will gladly help and/or answer questions, if done so respectfully. However, none of us really want to become a self narrating zoo exhibit (Thank you, Jim Sinclair for that quote). Google what you can, evaluate whether it’s applicable and whether its aim is to benefit you or whether it’s to benefit your child.

Dispense with the idea of functioning labels. We all have bad days. We don’t need our success and abilities judged by whether we can drive a car or not (some NT people can’t, either) or whether we can speak or not. Declaring that you don’t need your child to have a cure because they’re “high functioning” alienates those among us who are not HF by NT standards. Being able to speak, drive, live on our own, etc. is not the end all of success.

Love your child.This seems like it doesn’t even belong here, doesn’t it? Of course I love my child! This is what you’re provably thinking, right? But is it true? I know, I know, it’s a hard question to ask. If all of the things you do to help your child made them no different than they are today, would you still love them unconditionally, accepting them just as they are? Love your child. Appreciate them for who they are. Don’t let your aim be that your child no longer appears autistic, because that is draining. Appreciate every second, and realize that in the end, you may never hear the words “I love you,” but that doesn’t make it any less true.