The Unrecovered [reblog]

Chavisory has an awesome response to the New York Times article “The Kids Who Beat Autism.” As one of the “recovered,” I can totally relate to this, so I’ll post it here in its entirety:

I have had a lot of reaction in the past few days to that New York Times Magazine article concerning “The Kids Who Beat Autism.” Here’s about all I have left.

The parents, the teachers, the therapists and researchers without a clue who are celebrating “recovery” because they have, in their heads, defined autism as a fixed set of permanent inabilities—

-Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.

-Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.

-Are not the developmentally disabled women who suffer a sexual abuse rate of over 90%, no thanks to the compliance training that teaches that allowing others to control our bodies is desirable behavior.

-Are not the kids pulling themselves through school without disability accommodations.

-Are not the kids getting their supports pulled out from under them when they lose a diagnosis.

-Are not the kids getting chided and belittled because their challenges and oddity are now seen as choices of defiance or misbehavior.

-Are not the people being lied to about who they are.

-Are not the people who are going to wake up one day 20 years from now with no idea who they are or how they got there.

-Are not the people who will spend a year and a half having a meltdown with no idea of what’s happening or why.

-Are not the kids being taught that accepting yourself as you really are and as you really work, would be the worst possible thing.

-Or that the “optimal outcome” for you is to spend the rest of your life pretending to be something you’re not in order to uphold the illusions of the people around you.

-Are not the people who are going to have to re-learn where they belong in space and time and how to live there.

-They will not be the people giving their kids a community and a support system years from now. They will not be the ones who know what to do when they start having breakdowns and burnouts.

They will not be the ones supporting their kids in learning self-acceptance when all their passing skills fail because they are actually incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this article, for joy and authenticity.  This article could’ve come with a spoiler alert; we know the end of this story. We know it many times over.

It’s just not that these kids live out their lives as non-autistic people.

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Fourteen Things Not to Say to Dee (about Autism)

This is my personalized version of the “Fourteen Things Not to Say to an Autistic Adult.” I haven’t gotten all of these yet, but I’m fairly certain I will eventually.

1) “You don’t look autistic.”

What do I look like, then? What does autistic look like? The only time this phrase might be anywhere near appropriate is if you’re a neurology expert looking at my brain scan.

2) “You can’t be autistic because…”

You can’t be serious. Again, unless you actually have the qualifications…

3) “Don’t call yourself autistic. You’re a person with autism. You must use person-first language.”

I understand the concept and the reasoning behind person-first language, and I default to it when talking about other people. However, I’ll call myself whatever I damned well please, and respect other people’s preferences when referring to themselves. I know a woman whose daughter insists on being called Batman. Who am I to stop her? Until she says otherwise, she’s the motherfrakking Batman.

4) “Are you like Rainman?”

To quote Dustin Hoffman in that role, “I don’t think so. No. Definitely not.”

5) “You’re autistic? Does that mean you’re retarded?”

Excuse me while I throw the DSM-V at you. The term “retarded” is offensive as hell.

6) “You’re too intelligent to be autistic.”

See #5.

7) “You’re not autistic. You just have Asperger’s.”

I got that from a psychiatrist a couple of weeks ago, actually, so I’ll tell you what I told him:
There are two reasons I don’t have Asperger’s. First of all, Asperger’s is no longer a diagnosis in the DSM-V. It’s been wrapped up in the Autism Spectrum. Second, I don’t fit the DSM-IV criteria for Asperger’s Syndrome because I had a speech delay, and the definition of Asperger’s requires that you don’t have a speech delay.

Third, “just” have Asperger’s? Way to belittle millions of people!

8) “You must be high-functioning.”

It depends on your definition of “functioning.” There have been times in my life where I was very low-functioning.

There’s also the concept that functioning labels are all sorts of wrong. I’m not so sure about that right now; functioning labels are convenient for clinicians, at the very least. It’s like an obstetrician telling a midwife that a woman is at -3 station; it’s jargon that helps the physicians determine the appropriate treatment for a person and her situation. What I’m trying to say is that certain terminology useful when used correctly. Too bad it’s not always used correctly.

I also remember a time when my therapist referred to me as being high-functioning, though she was speaking in regards to my supposed bipolar disorder (a diagnosis that has since been ruled out). I just gave her a look, because to me, it was a phrase used to describe people with  DD (developmental disabilities), usually with mental retardation, and I didn’t think I was one of those people. I didn’t want to steal a term that belonged to someone else, so to speak.

9) “I know an autistic person, and you don’t act like he or she does.”

Let’s replace “autistic” in that sentence with practically any other descriptive term for a person, shall we?
“I know a Black person…”
“I know a blonde person…”
“I know a straight person…”
“I know an Indian person…”

I hope you can see how this could be problematic.

10) “You don’t act like you’re autistic.”

Why thank you; you have no idea how much energy and effort I place into seeming relatively ordinary.

11) “You’re just saying you have [autism] to get away with being rude.”

Nope. Life is too short for me to be intentionally rude. Also, if I were unintentionally rude, I’d want to know exactly how, so I can avoid it in the future.

12) “My friend’s/neighbour’s/second cousin twice removed’s child had autism, but they put him on a special diet and he got better.”

Good for that person!

13) “You can get over it. It’s just in your head. It’s not physical.”

Yes and no. It is in my head (studies show that the brains of people with autism are markedly different from other brains), but it’s also physical.


You can get over being left-(or right-)handed. It’s just in your head.


You can get over having a stroke. It’s just in your head.

14) “You seem so normal!” “I can’t believe you have autism!” “You are doing really well, so you must be so proud of yourself.”

Believe it. Considering the tendency for girls to be under-diagnosed, the fact that I had a diagnosis at age four really says something. “Doing really well” is relative. One of the people at the place that gave me the diagnosis recently told me that I was so successful, most likely because I have a spouse, kid, and bachelor’s degree. However, I don’t feel that way because I don’t have a job outside the home, and am therefore not putting that degree to good use. I also don’t feel like I’m successful at my actual job of being a stay-at-home mom, because I often have trouble figuring how how to interact with my son, and I’m a horrible housekeeper.

As I said, success is relative.

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Fourteen Things Not to Say to an Autistic Adult

Originally posted by purpleaspie:

Last night somebody shared an article on Facebook. The article was called “Things never to say to parents of a child with autism.” A comment on the article asked why there wasn’t one about things not to say to an autistic adult. I decided to write that article. It’s based on not only my experience, but also the experiences of my autistic friends.

1) “You don’t look autistic.”

My response to this would be something along the lines of what Gloria Steinem said when people told her she “looked good for 50.” She said, “This is what 50 looks like.” I say, “This is what autism looks like.” However, what I’d like to say is: “I don’t look autistic, and you don’t look ignorant. I guess we’re both wrong.”

I don’t know what people who say this mean when they say I don’t look autistic. What does autism look like? If I looked at any of my autistic friends, I wouldn’t be able to say, “This person looks autistic,” if I didn’t already know they were.

Sometimes people will say, “But you look so normal.” I don’t know if that’s meant to be a compliment or not. To this I say that I am normal.

2) “You can’t be autistic because…”

This could be, “You can’t be autistic because you can talk,” “You can’t be autistic because you have friends,” “You can’t be autistic because you have a job,” or “You can’t be autistic because you are married.”

Autism is a spectrum. There are many variations among autistic people. Some are non-verbal, while others are what is known as hyperlexic, meaning they talk a lot and have large vocabularies. Some autistic people have jobs, and some don’t. Most autistic people have friends, and those that don’t usually want to have friends. Some autistic people are married, and some are not. There’s probably as wide a variation among autistic people as there is in the non-autistic population.

3) “Don’t call yourself autistic. You’re a person with autism. You must use person-first language.”

I call myself an autistic person. Many in the autism community prefer to use autism-first language. As Ari Ne’eman said, “When I go on a trip I don’t forget to pack my autism.” I’ve written blog posts before about why I prefer autism-first language. However, it is a personal preference. Some prefer to use person-first language, and others don’t. All of us would prefer to not be told what to call ourselves, especially by people who aren’t autistic.

4) “Are you like Rainman?”

Rainman was a fictional character in the movie of the same name. Rainman was portrayed as an autistic man with savant skills (savant skills are considered to be exceptional abilities by people with intellectual disabilities in the areas of “rapid calculation, art, memory, or musical ability,” according to Wikipedia.) He was based on an actual person with savant skills, Kim Peek, but Kim Peek was not autistic himself.

Most autistic people are not savants. Some are, like Daniel Tammett, author ofBorn on a Blue Day, but they are the exception, not the norm. Not all autistic people are savants, and not all savants are autistic.

5) “You’re autistic? Does that mean you’re retarded?”

First of all, let’s not use the “r” word. It may have once had a clinical meaning, but these days it’s used primarily as an insult. Second, does being autistic mean a person has an intellectual disability? Not always. As I said before, autism is a spectrum. There is a lot of variation among people on that spectrum. Some people have intellectual gifts, while others have intellectual disabilities. Most of us fall somewhere between those two. Many autistic people have normal to above-average IQs and have learning disabilities at the same time, which may mask their true abilities. Finally, many of us simply don’t learn the same way as non-autistic people, and we may have trouble with an educational environment that is not set up for people like us. That can cause us to be labelled as “retarded” or “disabled” when we’re not.

6) “You’re too intelligent to be autistic.”

Again, there is much variation among people on the autism spectrum. Some of us have low IQs, some of us have superior IQs, and most of us fall somewhere in between. Intelligence is not a diagnostic criterion for autism.

7) “You’re not autistic. You just have Asperger’s.”

Asperger’s Syndrome is a condition that is on the autism spectrum. The latest version of the DSM, the diagnostic manual for mental disorders, has done away with the Asperger diagnosis in favour of simply using “autism spectrum disorder.”

8) “You must be high-functioning.”

Functioning labels are not useful. They are an artificial means of trying to classify people into rigid and discrete categories. Nobody is 100 percent “high-functioning” or 100 percent “low-functioning.” Some people can change their “functioning” levels within the space of a few hours depending on their energy levels or the environment they’re in. To paraphrase Laura Tisoncik, when you’re labelled low-functioning your abilities are ignored, and when you’re labelled high-functioning your needs are ignored. There are no specific, definable criteria for what is “high” and what is “low” functioning.

9) “I know an autistic person, and you don’t act like he or she does.”

What I would like to say: “I know a neurotypical [non-autistic] person, and you don’t act like he or she does.” Again, I bring up the words “spectrum” and “variation.” When you’ve met one autistic person, you’ve met one autistic person.

10) “You don’t act like you’re autistic.”

There are two possible answers to that. One is that I am acting like an autistic person, and this is how this particular autistic person acts. Again with the spectrum and the variety of people within it.

Another answer, though, could be that I am currently expending all my energy to specifically not act like an autistic person. I could be at work or in some other situation in which it is important to act a certain way — not stimming, not talking about my special interest, trying hard to make eye contact — and I am currently doing my “mimicking the neurotypicals” act. When I am alone or in a more autism-friendly environment, them I will probably act more autistic.

11) “You’re just saying you have Asperger’s to get away with being rude.”

I’ve had that accusation levelled at me, as have many of my friends. Oddly, it is often levelled at us when we are NOT being rude. I’ve heard that there are people who say they have Asperger’s as an excuse for being rude, but I’ve never encountered any of these people. If you read the comments for any YouTube video or news article online, you’ll encounter plenty of rude people who don’t claim to have Asperger’s at all.

Generally, I’ve found that if a person who has Asperger’s does accidentally offend someone, they are genuinely sorry for it. An Aspergian person may use Asperger’s as an explanation for rudeness but not an excuse, the difference being that the person using it as an explanation will apologize and try to learn from the experience so that they don’t do it again, while the person using it as an excuse will refuse to take responsibility, won’t apologize and won’t care if they do it again.

12) “My friend’s/neighbour’s/second cousin twice removed’s child had autism, but they put him on a special diet and he got better.”

Some autistic people have food allergies, sensitivities or intolerance. Some are sensitive/allergic to gluten. Some are sensitive/allergic to dairy. Some are sensitive/allergic to other foods or ingredients in the food. In those cases, their behaviour improves once they stop eating the foods that make them sick. That doesn’t mean they are no longer autistic. It just means they are feeling better than they were when they were ingesting substances that made them sick.

In other cases, parents put their child on a gluten-free/dairy-free diet because they’ve been told that all autistic children should go on that diet. Their child is in therapy at the same time, and if the parent sees an improvement they may credit the diet for it rather than the therapy.

13) “You can get over it. It’s just in your head. It’s not physical.”

This is often said to people suffering from depression or anxiety as well as to autistic people. Apparently when something is in your head, other people think it somehow isn’t real, hence the saying, “It’s all in your head.”

Autism causes neurobiological differences in the brain. There are actual physical differences in the brains of autistic people, so it actually is physical.

Certainly, the right kind of therapy and support can help autistic people, but that doesn’t mean we are “over” our autism. We can learn to manage our symptoms, but autism is always there.

14) “You seem so normal!” “I can’t believe you have autism!” “You are doing really well, so you must be so proud of yourself.”

What can I say to these? Am I proud of myself? Yes, I am proud of myself for my accomplishments — getting a university degree, keeping the same job for 12 years, buying a house, maintaining a long-term relationship. However, as I said in response to the first item on the list, autistic people can and do achieve all of those things. “You seem normal!” That is because I AM normal. “I can’t believe you have autism!” Well, believe it. Autistic people can accomplish many things that were once believed to be impossible for us, and we will keep on achieving them.

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Open Letter to John from Freshman Year

Dear John,

(I’ve always wanted to write a “Dear John” letter, ever since I was a kid, watching the TV show Dear John.)

I’m finally starting to understand why you were so frustrated that I couldn’t pick up on certain cues that you really didn’t want to hang out with me. I believe you actually said that “normal people would have gotten the hint” (I’m obviously paraphrasing from sixteen years ago, so forgive me if the exact wording is off.)

At the time, I thought I was a normal person. Or, at most, I could be a normal person if I tried hard enough. I now know that’s not true. While neurotypical (aka “normal) people can pick up on subtle social cues and react accordingly, I have trouble. I’m almost robotic in that way.

I have to have encountered a similar enough situation in the past, then go through my memory to see if I was told the right way to respond. If I’d never been explicitly told the right way to respond, I’d have to check my memory to see what people’s reactions were in the past. Mind you, due to my trouble picking up on subtle cues, I may never have known if something was ill-received!

I hear that “normal” people don’t have to check their memories; they instinctively know the right way to respond. You can see how much harder I have to work than a “normal” person in order to interact well with other people. Doing so much extra work takes its toll on both the mind and body, especially in a dorm setting where there’s no real place to get alone-time to recharge the cognitive-emotional batteries.

So John, while I’m sorry I annoyed you, and my behavior disturbed you, there’s little I could have done to prevent it (please note that I said “little,” not “nothing”). However, if you were as “normal” as you claimed, you consciously made the choice to be an utter asshole when deciding to finally spell it out for me, over AIM, calling me crazy, an insurance liability, and who knows what else. Don’t get me wrong; I do appreciate you spelling it out for me. It taught me a valuable life lesson, albeit one most people never need to be taught.

As it’s been sixteen years and you’ve most likely moved on with your life, I shall move on as well. If you do read this, or if anyone reading this sees themselves in John’s shoes, please try to be more understanding the next time you’re in a similar situation.


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Open Letters Series

I’ve mentioned this on message boards and Facebook pages associated with my real name, so there’s really no point in failing to mention it here, on my blog, which I can mostly control. I am autistic. I was diagnosed at age four. In my specific case, it means that I have trouble communicating, figuring out other people’s emotions, and having the appropriate emotional response. This has led to my having trouble with social interactions, and therefore relationships of all kinds.

As I only found out about the diagnosis a few months ago, I’m still processing exactly what it means, and how it has shaded my past experiences. I’m also trying to figure out why I didn’t know about it for thirty-one years.

Lately, I’ve been tempted to contact certain people to either explain my inappropriate behavior, or failure to “get a clue.” There are professionals, such as therapists and psychiatrists, whom I’d love to ask why they didn’t have a clue (I’d start out with my elementary school psychologist, who was actually given a copy of my evaluations). However, I realize that this might be viewed as inappropriate at best, and downright creepy at worst, to track down and contact people who I may not have seen in over twenty years. Heck, some of them may no longer be alive.

The next best thing seems to be to write open letters on my blog. If the intended recipient sees them and wants to contact me, then great. Otherwise, no harm, no foul. Identifying information will be modified.

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