So you want to donate your money/time/resources to Autism Speaks

To whom it may concern:

It seems as though you are concerned about the plight of autistic people, particularly in the United States.  With a rate of 1 in every 88 children being diagnosed, and a similar percentage of adults diagnosed with autism, this is a very important cause to be concerned about.  However, I recently discovered that you have lent your support to Autism Speaks.  You may think that Autism Speaks is a very good cause, because helping autistic people and their families is an excellent goal, right?

Unfortunately, Autism Speaks, though they are the most vocal charity for autism here in theUnited States, is not a charity that has the needs of autistic people as their goal.  According to Autism Speaks’ own financial records, they contributed only 4% of their yearly earnings in 2010 to family services. The rest went toward marketing, their board members’ income (many of whose salaries reached the $400K mark), awareness campaigns based on the tragedy model of understanding autism, and research into finding a cure.

Autism Speaks does not have a single member of their board who is an autistic person themselves.  A common slogan in the autism community is “Nothing About Us Without Us”, and that should be the defining goal of every autism organization.  Unfortunately, Autism Speaks does not feel the same way.  While they do have several young autistic people involved in a few minor capacities, overall, they have been very anti-autistic in their dealings with autistic teenagers and adults.

Autism Speaks’ ad campaigns have been inordinately focused on the idea that autism is a tragic “disease”, which is factually incorrect at the outset, as it’s not a disease, but a disorder that affects the way a person’s brain functions.  Every single one of their ad campaigns have focused on the negative side of autism, that it’s an “epidemic” and is something that should be cured (an idea that many autistic people vehemently disagree with for a number of reasons).  A very specific ad campaign that you should investigate is a video called “Autism Everyday”, in which Alison Tepper Singer, a mother of an autistic child, contemplated murder/suicide of her autistic daughter, on camera, in front of said autistic daughter.  Another very controversial video was entitled “I am Autism”, now removed from the internet (link takes you to a video of the script) and featured children and adult autistics with very negative portrayals of their lives, with words like “I am autism and I will destroy your marriage”, among others.

I’m certain that this information is disheartening, and you’re wondering by now what you can do in order to change the conversation regarding autism.  The first step is to pull any and all support from Autism Speaks.  This is a very profitable charity and the most well-known one for autism, particularly in theUnited States.  The second step is to investigate fully all future charities you invest in.  The majority of autistic people recommend the Autistic Self Advocacy Network (autisticadvocacy.org), because it is run by autistics for autistics.  There are several other worthy charities, such as the Dan Marino Foundation and the Doug Flutie, Jr. Foundation for Autism. The focus of these charities seems to be on helping autistic people who already exist, rather than working to find a cure so no more autistic people can be born.

Thank you for your time.

Sincerely,

A concerned autistic person

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Children, and what we say about them

I won’t take too much time today to comment on the blog post that shall not be named or to dwell on reactions to it.

But what I wholeheartedly want to talk about is our children, and what we say about them.  I have before written a piece about why it’s a terrible thing to post an autistic person’s photo online, with information that they are autistic, without their consent.  I wholeheartedly believe this to be true.  Oftentimes, we don’t think it’s a big deal, as long as we don’t put their real names, or we do, but they’re just a kid, so it doesn’t matter, right?

Unfortunately, that is not the case.  We live in a technology age.  When I was a child in the late 80s and early 90s, access to computers was a lot more limited than it is now.  I didn’t have internet access at home until I was in high school.  So the possibility of my parents, my grandparents, aunts, uncles, siblings, etc. writing a piece about how much trouble I was, well, it wasn’t something that was even feasible to have been done.  But every time I see a story or a post about how difficult it is to have an autistic sibling/child/friend, I cringe a little when I see a photo attached.  

I’m not saying not to share those stories.  But there is a point where publicly available information can harm people.  Let’s talk about the woman who was denied insurance benefits for looking too happy on Facebook. It is one thing to share your own story and face unfair consequences.  It’s another thing to share someone else’s.  Please note that sharing your experience with an autistic person in your life (or any person, really, but specifically someone who has a disability) affects not only you, but them as well.  

We live in a culture where there’s this phenomenon of mommy bloggers, and goodness, I’m one.  I share information about my children, and when my children were very young, I was a bit less careful about concealing all of their information.  But now, it’s different.  I don’t share my kids’ photos very often, and most of the time, their faces are blurred or obscured in some way.  There’s no identifying information about them in my blog except that my older child is female and she is six and my younger child is male is he is five.  I’m sure I’ve mentioned the exact date of their birthdates somewhere, and I do talk about the fact that they are autistic.  Otherwise, there’s little revealed.  That isn’t because I think I’m superior to other mothers.  It’s that I am careful, because I don’t want the world to take something I’ve said about them and use it to discriminate against them.

I keep thinking of this child, “Michael” from Liza Long’s blog, and how at thirteen, his mother has basically called him a monster.  People have called her “brave” for speaking out.  Other people have been appalled at her words (I tend toward the latter).  Few people have seemed to care a bit about Michael himself.  What will happen when he leaves the institution where he’s currently residing? His mother has said that he authorized the telling of his story, but somehow, I doubt that.  I wonder if he knows that his photo and pseudonym (with his mother’s REAL name) has been released and that he’s been likened to mass murderers.  I can’t fathom what that is doing to him if he does know.  My self- esteem was affected in childhood by being treated as though I was a problem to be fixed rather than to be accepted as I am.  I had it mild, though, I really did.  A few supplements, some whackadoodle biomedical rewiring of the brain ridiculous therapy for three years and that was it.  And that affected me for years.  I never grew up thinking that people thought that I was going to murder a bunch of people, that I was dangerous, violent.  How in the world would it be to grow up like that? Would I still be afraid of that now, at age 31, had I grown up thinking it was true? Probably.

How we talk about our children matters, especially on the internet.  Feel free to vent your little heart out, but if you can, do it as privately as you can, with other parents, in a less public place (private Facebook groups or message boards tend to be the best choice, I think).  Use pseudonyms.  Don’t use their photograph AND their real name.  Think about the message you’re sending before you hit “publish” or “send”.  

 

There really aren’t words, but I’m going to try anyway

I’m supposed to be in bed.  I have a long day tomorrow, and I’m using up some very valuable reserves of energy in order to write this post.

I am a ball of emotion after what happened on Friday.  27 people were killed and my heart goes out to their families.

I find it interesting that not even 24 hours passed before there was talk about the shooter being autistic.  I knew it would come up — it nearly always does.  It even had one “expert” saying this:

Well, actually, a symptom of Asperger’s, and this is one report coming out which may or may not be true, is something’s missing in the brain, the capacity for empathy, for social connection, which leaves the person suffering from this condition prone to serious depression and anxiety.”

 

I  asked people on my personal Facebook page to defriend me if they believe that autistic people lacked something in their brains, if someone my neurology made them fearful of me or people like me because they assume that I lack something — what? Empathy.  What they’re talking about is empathy.  

There’s been plenty of speculation on empathy and autistic people’s relation to empathy.  You can thank Simon Baron-Cohen for that stereotype – that autistic people don’t experience empathy like the rest of the world does.  You can read his book, I suppose, if you want detailed information. Or you can read this article that unpacks the idea about theory of mind and empathy quite well.

Of course, since Baron-Cohen made his comments about empathy and theory of mind, the science behind his ideas have been proven a bit wrong.  A recent study explained that perhaps autistic people don’t experience empathy like neurotypical people do, but that is only because we are unable to properly express empathy.  You can read about that here. I can definitely say that I probably fall into this category.  I often am so overwhelmed with what I perceive other people feeling that I can’t properly articulate my own feelings and express the correct social response.  It took me until today to even be able to write this post and I’m still processing all the information regarding Friday’s shooting.  I’d also like, at this point in time, to link Emily Willingham’s post about empathy, because I think it’s a great read. I often defer to Emily, because as a scientist and a mother of an autistic child, I think she’s fantastically knowledgeable and says things far better than I could (as a non-scientist).

Most people who read this blog know that I’m autistic.  I was diagnosed last year with Asperger’s Syndrome at the age of 30, having displayed symptoms from a very young age. I knew I was different, because I didn’t behave in “normal” ways but I didn’t even really know what “normal” meant.  So the way that autism is treated in the media really does have an impact on me.  In addition to being an autistic person, I am also a parent of two children on the autism spectrum.  My daughter is six and my son is five.  As soon as I heard about the shooting, I realized that in another time and place, my children could have been involved.  They could have been killed.  They could have been traumatized by hearing one of their teachers killed.  But it’s more than that.  I defer to Paula Durbin-Westby’s post about how to react as an autistic mother, because she said it better than I ever could.  How do you respond when the media is vilifying people like you? How do you tell your children about such a horrific event, knowing that they may hear about the killer’s presumed diagnosis and that it matches theirs? I don’t even know.  It’s a process, and I won’t be telling my five and six year old about it anytime soon, because I don’t think that they’re emotionally prepared for that (even I’m not, not really).  

I am also a former school teacher.  I taught 6th grade, and then at another time, 10th-12th grade.  But I think a lot about my students, and I also think about the teachers that lost their lives on Friday.  In particular, I still haven’t managed to verbally explain who Victoria Soto is without breaking down literally sobbing.  A lot of people talk about teachers and what they’re worth, and well, Ms. Soto was one of the good ones.  What a brave and courageous individual who sacrificed her own life so that her students — her tiny six and seven year old students — could live.  

So tonight, I’m conflicted.  I’m angry that this happened.  I’m angry that autism and mental illness is being vilified as a potential cause of this shooter’s decisions, and that even more so than before, when a person is a “loner” or doesn’t make eye contact, they’ll be seen as a threat.  It was bad before, and I fear it will only become worse as the days go on.

I don’t know if I can talk about the discussion surrounding mental illness and autism as a positive sign. Overwhelmingly, the conversation has been directed by people who are related to autistic people and mentally ill people. Rarely have autistic people been permitted to talk about our own experiences without being accused of “well, that’s good for you, but you’re not like this person — this person is violent!”  I have zero problem with parents of autistic children talking about the stigma and how that’s a terrible thing.  I have zero problem with that.  What I have a problem with is parents and professionals trying to tell me that they know better, that they know the autistic mind better than autistic people ourselves.  I’m sorry, but no.  You’re wrong, and speaking over us as though we don’t matter, we don’t count isn’t helping us, and it certainly isn’t helping your child who will be one of us when they grow older.  It’s yet again the “not like my child” statements — well, no, your six year old probably isn’t like me, because I’m an adult.  If you (general) were judged about what your life would be like when you were six years old, what could they tell? Oftentimes, autistic children’s parents are told that their child will never be able to do x, y, and z when they are extremely young, but they don’t know that to be true.  I am sure that my parents heard a few of those statements, but I’m an adult now.  I have a driver’s license and a college degree, and while I’m completely understanding that those things aren’t possible for every autistic person, they are possible with support for many.  

Listen to autistic people.  Mourn the victims.  Talk more about the 27 lives that were lost than about preventing mentally ill and autistic people from procreating.  Please.  Whether Adam Lanza shared my neurology or not, I know he did a terrible thing, and my neurology should no more be implicated in his crime than the fact that we both have brown hair.

“Are you joking or serious?”

One of the most common tropes about autism is that autistic people can’t understand sarcasm.  Most stereotypes have some grain of truth in them, and this is no exception.  Many of us have difficulty with figuring out sarcasm. In addition, we also tend to have difficulty with idioms and other sorts of figures of speech.

This started out very young for me.  My mother recalls a story from when I was less than five years old, and I came home crying because a classmate of mine, Billy, had “shot a bird.”  Of course, most of my readers will chuckle a bit at this because it’s glaringly obvious now that what my teachers really meant when they made this statement was that my classmate Billy shot up his middle finger at someone.  As a five year old, I didn’t know this, and to be quite honest, it took me many, many years to figure out what was going on in this scenario.  My parents assured me that no birds had died as a result of Billy’s actions, but it took me a long time to believe them.

My father is a very sarcastic person, but his tone of voice is difficult for me to understand, so sometimes I interpret something as sarcastic when it is not and vice versa.  This has landed me in trouble more than once.  He once said (in a tone I took as sincere) “thank you for doing this action” when he really meant “I don’t wish you any thanks because you did a pretty terrible thing”.  I laughed inappropriately, and I certainly was punished then.

Much of my family can tell you one story or another about how I missed sarcasm or some sort of figure of speech.  I still recall my aunt telling still-very-naive me at age 12 to “say no to boys”.  I couldn’t figure out why I would want to say no, and what I’d need to say no to.  I didn’t think boys were inherently dangerous (that’s another discussion for another, more serious blog post).  It was a good ten years later that I figured out what she had meant in retrospect.  I laugh about it now, but it was downright embarrassing to realize what a colossal mistake I had made in giggling at her words and then shutting up very quickly when she gave me a stern look and said “I’m serious.”

I tried to figure out these things on my own — what the person’s intent is, whether in context it makes sense to be serious or to be joking.  It’s very difficult even now, and I must almost always use the phrase that adorns the title of this post.  “Are you joking or serious?”  Most of the time, people look at me funny, and then give me as honest an answer as they possibly can.  I do appreciate this.  I appreciate friends who will pull a John Watson on me and say “sarcasm” when someone is being sarcastic and it’s not immediately obvious by other people’s laughter.

The funniest part about this is that I myself am rather sarcastic.  I say things in jest, and I try to convey a tone that screams “sarcasm”, and I don’t know if I do it well or if I’m total crap at it.  I know that many times, I’ve had people look at me horrified until I explain that I’m joking, so I know that at least some of the time, I miss the mark there.

One thing I detest about this whole sarcasm thing is that it’s often used as a way to humiliate and belittle a person who doesn’t understand it.  Browse “sarcasm” under Google images, and you’ll find images that relate to people being “idiots”, “morons” and “if I have to explain it, it’s not funny anymore!”  This is incredibly hurtful and it makes it very difficult to have a conversation pretty much ever.  Because I cannot always figure out when someone’s being sarcastic, it doesn’t matter if the conversation is online or offline.  It just doesn’t matter because if I can’t read their tone, it makes the entire conversation difficult.

Recently, it seems that a lot of people think it’s funny to joke about how “oversensitive” people who don’t get sarcasm are.  Because we’re taking “jokes” seriously, we are oversensitive and need to “lighten up”.  The most recent example I can think of is an incident in which Martin Freeman, who plays Doctor John Watson in BBC Sherlock and Bilbo Baggins in the upcoming release of The Hobbit, refers to Lucy Liu (who plays Watson in CBS’ Elementary) as a “dog” and “ugly”.  The interview apparently makes it clear that he’s trying to be funny and sarcastic.  That doesn’t make the comment acceptable in any way, and many people who were bothered by the comment were able to figure out that he was trying to be funny.  Even so, I need people to understand that it is not a moral failing to be unable to detect sarcasm.  I need people to understand that we’re not trying to be oversensitive, that we’re not trying to spoil your fun.  When we ask what the joke is, most of the time, we legitimately do not understand.  

*Please note that not every autistic person has this problem.  I should explain that there are many autistic people who can pick up on sarcasm, and that doesn’t make them any less autistic.  

My letter regarding the Congressional Autism Hearings

This is a copy of what I’ve already sent to them via this link.  By the way, huge thanks to K @ Radical Neurodivergence Speaking for the kick to the rear as a reminder to do this.

Note: This is one time where any readers do not get to agree or disagree.  These are my experiences and my experiences alone.  You write your story in the comments? That’s fine.  Just don’t dismiss mine.

To whom it may concern,

When I discovered late last week that the upcoming autism hearing would include actual autistic people and that advocates from ASAN had been invited, I was thrilled.  I was so happy that for once, people like me were being LISTENED to.  It actually moved me to tears, which isn’t something that often happens for me.  I was so ecstatic to be included in decisions made about people like me that I cried.  I thought later that of course there must be something truly *off* about that, because why shouldn’t I be included?

Most of the aforementioned hearing was focused on children, as it most often is.  That would have been fine if the focus had been on education, resources for parents that don’t scream “make this child less autistic” but instead provided real tools for said child to interact with a neurotypical world when they are not.  However, the focus was on vaccines, and I was appalled at the unscientific drivel that came from several people’s mouths. I was thankful that, for the most part, the representatives from the CDC combated the lies and fabrications being offered by others.  But that is not enough.

Finally, Eleanor Holmes Norton spoke up and asked about autistic adults.  I audibly cheered at that, that a question was being asked about us — finally!

She asked about people like me.  People who weren’t in the system, maybe who were late diagnosed.  She asked about people like me.  I was diagnosed at age 30 with autism.  I was functionally nonverbal until I was 8 years old, and I still do not have the same amount of functional language that most people my age have.

When I was a child, I was evaluated for everything under the sun.  But no one thought of autism, because I was female, and oh, yes, there are still doctors to this day who don’t believe girls have autism (seen by the fact that the ratio of diagnosed boys is four times the amount of diagnosed girls).  Also, most people just thought of me as shy, but no one ever really looked into why that is.  Why was I shy? It’s because I couldn’t process all the information being thrown at me.  The sensory issues, coupled with not understanding social rules and even processing language at the appropriate rate contributed to my overall quietness.

That’s beside the point, however, because back when I was evaluated for all these things, starting at age 7 or 8 (1988/89) and ending at age 12 with a “final” diagnosis of ADHD (1993), I was still at least one year too early to have been considered for a possible diagnosis of Asperger’s.  People still had very wrong ideas about autism back then, and those attitudes aren’t gone today, not by any means.

Sadly, back then, ADHD was no more understood than autism, and many well meaning people tried to “fix” me, in similar ways to the “curebie” camp tries to “fix” autistic people.  I was not, thankfully, submitted to bleach enemas or HBOT, but I certainly did have to do bizarre patterns on the floor, and take vitamin supplements and perform weird exercises in order to improve my visual processing.  None of it worked, and I ended up feeling more broken than anything else.

What happened to me? Gratefully, I spent most of my time in good schools with small classes — all private Christian schools.  Two of those schools had disability programs, which were mostly centered on the intellectually disabled (which I am not, by definition).  The three years I attended one specific school, however, every single one of my deficits was amplified.  I ended up leaving that particular school because I could not get through a single academic class without completely shutting down, because of sensory issues, bullying, threats, executive dysfunction. All of these things contributed to my issues, and thankfully, my parents had the wisdom to enroll me in a different school, with financial help from my maternal grandparents, who were able to make up the difference between the two schools.  That school had a fabulous disability program and the coordinator understood my issues, despite the fact that I had never been formally diagnosed with autism.  She pegged me for “other learning disorders” besides ADHD, but by that time, my parents saw no need for further evaluation.

I am a college graduate.  I somehow managed to do that all on my own, without much help from the disabilities services, but that isn’t because I wanted to.  It’s because thanks to the technological age, all of my professors had email addresses and they listened to me when I typed out an email expressing my issues with succeeding in their classes unless I was able to take my tests in the testing center, or being able to type everything I turned in vs. required to handwriting it.

Today, I am an adult with two children also on the spectrum. I am married to a person in the US Navy.  This seems like I must be completely successful, because of course, I’m a college graduate and I have a successful relationship and children, so this must be the case? Actually, no.  I still need help with some tasks that seem very basic — communicating outside of text and/or email is nearly impossible for me.  I still need help managing my money.  I hold down a part-time job, but find I am overstimulated if I work more than 15 hours in a week.

This is what an autistic adult looks like.  Yes, there are those who are more successful than I, and some who have far more needs than I do.  But this is my story and I felt the need to share it, because it seemed like there were very few people sharing what it was actually like to be autistic.