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.


Someone was wrong on the internet

Actually several someones were wrong on the internet. Allow me to share my latest encounters with people on the internet who were wrong.  They are both amusing and horrifying.

People periodically come in to my Facebook autism spectrum disorder group to post articles claiming that vaccines cause autism. There is no evidence that vaccines cause autism but there is plenty of evidence that not vaccinating causes potentially devastating and fatal diseases such as polio and measles. Therefore I have little tolerance for people who refuse to vaccinate their children and who spread lies and misinformation about vaccines. I have even less tolerance for these people when the articles they post claim that Andrew Wakefield is a truth crusader (that doctor who lost his medical license after his study linking vaccines and autism was deemed to be a fraud) and that holistic foods cure autism.

When I told that person her article was crap she told me to get woke and see Vaxxed. I’m not sure what exactly ‘get woke’ means but I know that Vaxxed is some bullshit anti-vaccine propaganda documentary. I will not be seeing it. I was also told that if I knew my stuff I’d know that measles is caused by a lack of Vitamin A and was asked when the last time I’d heard of anyone having polio. She’s right, it has been a while since I’ve heard of anyone having polio. Do you think that could have anything to do with the fact that there’s a vaccine for it? When I took a research methods class in college one of the points that was frequently drilled in to our heads was that correlation does not equal causation. I cannot tell you how many times I want to shout CORRELATION DOES NOT EQUAL CAUSATION through the internet at all the morons whose inane arguments prove they do not grasp this concept.

My Facebook ECT support group is generally supportive and there are rarely fights there but the other day someone came in to the group to share links to his ECT group and blog. Since this was an ECT support group we all clicked on the links thinking they would be supportive of ECT but they were strongly anti-ECT. They claimed that ECT was traumatic, inhumane and caused brain damage. I’ve heard all of that before but the guy also said some things about ECT that I’d never heard before.

Apparently ECT causes a state of coffea.  I didn’t know what coffea was. I figured it had to do with coffee but I also wondered if it might have something to do with covfefe. The guy claims that ECT affects your body in a similar way to coffee and makes you like coffee less. It also makes you like bondage and 50 Shades of Grey less. I guess it’s a good thing I was never a fan of those things to begin with.

The restraints that are used to hold you down during ECT result in at least six invisible scars and the bite block that’s used results in dental problems such as bruxism. Is this guy trapped in 1952 or something? I’m proud to say that in addition to my six invisible scars from ECT, I also have a visible scar from it on my chest. This guy compared ECT to date rape and although he said the doctors who perform ECT inflict cruel punishment, he forgot to compare them to Hitler.

I’m pretty sure my brain sustained more trauma and damage trying to make sense of the nonsense that guy spewed on his blog than it did from ECT. He links to the blog of a woman named Alycia who underwent ECT. Even though she says ECT was helpful to her, that’s just because she’s ‘imprinted’ and is unable to recognize the trauma and damage it’s caused her. I kind of hope this guy finds my blogs on ECT and makes me the next Alycia. Regardless, to him I say ‘Bye Felicia.’

Now back to autism related assholery. Another guy claimed on his blog that all people on the autism spectrum are disqualified from being pilots and that there’s not a single flight organization in the world that gives clearance to fly to anyone with an ASD diagnosis. When I told him this was untrue, he said his personal experience showed it was true and that until I could provide a counterexample I needed to shut the fuck up. Then he called me a fucking bitch and said if I wanted to play hardball we would play hardball. To him hardball involved citing FAA regulations that referenced personality disorders. I pointed out that autism is not a personality disorder but that since he’d responded to me telling him he had his facts wrong by calling me a fucking bitch, he might have a personality disorder in addition to autism.

I decided to take him up on his challenge and link to counterexamples showing that people on the autism spectrum could obtain their pilot’s license. He said that the chance of anyone on the autism spectrum obtaining a pilot’s license was less than 1% and he was doing everyone a favor by claiming there was a categorical ban on piloting with an ASD diagnosis.

After deleting my comments and threatening to ‘blacklist’ me, he wrote a blog saying that due to the verbal abuse I’d directed at him, he would now be moderating his blog comments. That’s right, the guy who called me a fucking bitch accused me of being verbally abusive. Apparently self awareness is as rare a commodity on the internet as subtlety. This guy went on to say that he can handle people disagreeing with his opinions. It’s too bad he can’t also handle people saying he hasn’t got his facts straight. Maybe they were alternative facts.

For our final example of someone being wrong on the internet, let us turn to the Philando Castile case. My friend posted a Facebook status about what a travesty the verdict that acquitted the cop who shot and killed Castile was. This friend of hers comes in to say that the cop had a tough decision to make and was afraid for his life after Castile told him he had a gun that he was licensed to carry. According to him there was no reason for him to say he had a gun and once he did say it he should have allowed the police officer to reach in to his pocket and retrieve it for him.

I said that sounded like victim blaming. Castile was following the officer’s instructions when he reached for his ID. He couldn’t have been expected to know that the proper protocol was to let the officer retrieve his ID if that even is proper protocol. He obviously told the officer he was licensed to carry so that the officer wouldn’t freak out and think he was a dangerous criminal when he saw the firearm.  If someone was intent on shooting you it’s unlikely they would tell you they had a gun. It seems you just can’t win when you’re black.

This guy responded that if you’re going to possess something as dangerous as a gun you need to educate yourself on the proper precautions to take. He then added “By the way, I’m part black.” This guy was white as paste.

So those were my most recent encounters with people on the internet who were wrong.  There is no shortage of people on the internet who are wrong so I’m sure I will have many more encounters of the idiotic kind. I know you’re never supposed to argue with an idiot because they’ll bring you down to their level and beat you with experience but there’s a part of me that kind of enjoys arguing with idiots. It’s true that most of them are too stupid to realize how stupid they’re being and they rarely if ever admit they’re wrong or change their mind as a result of anything you say.  In many ways arguing with idiots is a frustrating and futile sport but there is fun to be had in it. I’m rather proud of some of the zingers I shot at the idiots. I’m amused by the memes my friends posted in response to the idiots and arguing against the idiots has been a bonding experience for us. My encounters with people on the internet who were wrong has also made for an interesting blog.

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Julia the Autistic Muppet

Last week Julia the Muppet made her debut on Sesame Street.  Julia is autistic. Actually Sesame Street uses the term ‘people with autism’. That makes some people mad because the majority of autistic people allegedly prefer identity first language over person first language (ie, Autistic person over person with autism) I don’t really feel comfortable referring to myself as either so I say I’m on the autism spectrum. I don’t really care how anyone else refers to me as long as its not derogatory though. While I understand that person first vs. identity first language is an important issue to some people on the autism spectrum, it’s never been an important issue to me so I’m not bothered by the fact that Sesame Street uses person first language.

Nothing about the portrayal of Julia really bothers me. I thought it was very well done. I like that Sesame Street chose to make its autistic muppet a girl. There are many more boys diagnosed with autism then there are girls diagnosed with it. When I was in a program for young adults on the autism spectrum I was one of three girls in the program with about twenty guys.

Obviously girls with autism do exist and because boys make up the vast majority of autism diagnoses being a female on the spectrum can be very isolating. Therefore it’s nice to see an autistic female represented in the media so girls on the spectrum can feel less alone and the stereotype of autism as an exclusively male disorder can be challenged.

I recognize myself in Julia. She has some of the same mannerisms I had as a child and continue to have as an adult. Just like me, Julia flaps and jumps. Just like me, Julia has a tendency to brush people off when they first try to interact with her and give them the impression that she does not like them.

Julia is four years old. I watched Sesame Street when I was four. At the time I did not even know what autism was, much less that I might be on the autism spectrum but I did know that I was different from other kids. I would always be asked why I flapped and jumped and I never knew how to answer that question. It was just something I felt compelled to do.

I read an article by someone who has autism that described the first Julia episode of Sesame Street as having a subtle brilliance to it. A blog that reported on that article said that Julia the Muppet has the potential to be groundbreaking. I agree with both of those assessments.

While there are some striking similarities between me and Julia, there are some striking differences between the way Julia is treated on Sesame Street as a result of her differences and the way I have been treated as a result of my differences. As a small child I never got the message that my flapping and jumping were acceptable behaviors and I certainly didn’t get the message that there was anything to appreciate about such behaviors.

I got the message that flapping and jumping were abnormal, unacceptable behaviors. I got the message that I should stop doing it because it’s not what normal people do, it bothers normal people to see it and it would cause normal people to ostracize me. I had parents of my friends forbid those friends from playing with me because they worried my flapping might somehow be contagious. I was luckier than many kids on the autism spectrum in that I was not teased or bullied much by my peers but it did happen on a few occasions. One of the most memorable instances occurred when I was flapping on the playground. A girl came up to me and said in a derisive manner “What’s with the flapping? Are you a bird?” Then she imitated my movements in a mocking, taunting, manner.

On Sesame Street Julia’s peers and mentors are all accepting and accommodating of her differences. Since Julia’s sensory issues make finger painting uncomfortable for her, she is given a paintbrush. When the sound of the sirens cause her distress she is taken to a quiet area and guided in deep breathing exercises. At first Big Bird is upset and confused by Julia’s behaviors but once the others explain Julia’s autism to him he comes to accept and appreciate Julia for who she is.

Sesame Street explains autism in a simple yet masterful manner. When Big Bird asks what autism is, Alan (the adult human in the scene) says that for Julia it means she may not answer you right away. The words ‘for Julia’ are key because they show that autism affects everyone differently.

When Julia is upset by the siren Big Bird says that it wasn’t that loud.  Elmo says that for Julia it is. I don’t have the extreme sensitivity to noises or textures that Julia and many people on the autism spectrum do but it sure was nice to see it acknowledged that Julia perceives the world differently than neurotypical people. It was nice to see her perceptions and the distress she experiences as a result of her heightened sensitivities taken seriously and treated as being valid.

The best part of the episode is that it preaches not just tolerance for autism but appreciation for it. Big Bird isn’t urged to be friends with Julia just for the sake of being kind and inclusive. He’s urged to be friends with her because she has positive characteristics that make her a good friend to have. Elmo and Abby describe Julia as being creative and lots of fun. They say that Julia loves to play with her friends, thus shattering the myth that autistic kids do not want friends.

Alan tells Big Bird that Julia does some things he may want to try. Big Bird initially questions why Julia is playing tag while bouncing up and down because he’s never seen tag played like that before but when he joins Julia, Elmo and Abby in a game of boing tag, he discovers it’s a really fun way to play.

Julia is not entirely nonverbal but she doesn’t talk much, which is something Elmo states in a matter of fact, accepting manner. When Big Bird remarks that Julia is not like any friend he’s ever had before, Elmo and Abby say that’s true but none of them are the same either- Elmo’s a monster, Abby’s a fairy and Big Bird’s a bird.  Julia’s flapping gets compared to a bird’s but not in a derisive manner like mine was. It’s pointed out as something she and Big Bird have in common. It’s also pointed out that they both like to sing and play.  This shows kids that being of a different neurotype than their peers need not be a barrier to friendship. They can still find common ground and as Alan says the way in which they play doesn’t matter. The important thing is that they’re friends playing together.

The episode ends with a song about how “We can all be friends” with lyrics about how our differences make us amazing and are worth praising. This is a huge step in a different and right direction.

Up until recently autism was virtually never spoken of in those terms. It was framed as a devastating disorder that robbed its victims of the chance to have lives that were meaningful,valuable or fulfilling. The symptoms and behaviors associated with autism were regarded as being extremely problematic. The goal was to hide, suppress or eliminate those behaviors. The goal was to make autistic people behave more like neurotypical people. That was seen as the way to best serve autistic people and society in general.

The onus was on the autistic people or their caregivers to change their behavior so that they would be accepted. At best someone who flapped, jumped up and down and didn’t communicate verbally would be viewed with pity and compassion. They would not be viewed with respect or admiration (unless it was for ‘coping with’ or ‘overcoming’ their autism.)

To suggest that autistic people were fine the way they were, that they didn’t need changing, that it was neurotypical people who needed to change their attitude toward autistic people was unheard of.  To suggest that there was anything desirable about the way autistic people behaved and that neurotypical people should consider emulating some of their behaviors was unthinkable.

Yet Sesame Street just did all of that. And it could make all the difference.

It would have made a difference to me as a child and it makes a difference to me as an adult. When you’re constantly told that your natural ways of behaving, communicating and interacting with the world are wrong, abnormal and in need of change, it takes a huge toll on your self esteem.  I didn’t know any other kids who acted like me and to see a kid in a popular TV show who acted like me and was accepted and admired for who she was would have improved my self esteem.

It may also have improved the way my peers treated me. Instead of seeing me as someone who was weird and confusing, someone they had no frame of reference for, they may have seen me as resembling the beloved character Julia. Instead of seeing my behaviors as something to tease or question me about, they may have accepted and even joined me in them. Instead of assuming that I didn’t like them because I wasn’t initially responsive to them, they may have realized that my brain was just wired differently than theirs and continued to reach out to me in different ways like Big Bird did with Julia. Maybe like Julia and Big Bird we would have come around to each other and developed a friendship.

One of the criticisms I’ve seen hurled at Sesame Street is that they have others speaking for Julia rather than having her speak for herself. First of all, Julia is only four years old. Explaining the details of one’s disability to someone they’ve just met, would be a difficult task for many four-year-olds. It’s not at all unusual for kids that age to prefer to have trusted adults or even peers explain certain circumstances for them. Alan says that Julia likes people to know she has autism so it’s made clear that her wishes and desires are being honored.

Second, while many autistic people do have the ability to verbally express complex thoughts, many do not. Both forms of autism are valid and it would be impossible to have one character encompass all the different forms autism can take. I have never had impaired verbal abilities but while at four I may have had the ability to explain my diagnosis to strangers (if I’d actually had an autism spectrum diagnosis at the time), I would not have been willing to do so. At that point I was so shy I’d been diagnosed with elective mutism.

Another criticism I’ve seen is that the Julia episode is geared towards neurotypical kids, rather than autistic kids themselves. Considering the pro-acceptance message it sends towards neurotypicals, I can’t take issue with that either. It would be nice if in the future some episodes are geared toward autistic kids themselves but if we’re being honest, this is a neurotypical’s world and neurotypicals are the ones who hold much of the power. Therefore if we want to inspire change in the quality of life for those on the spectrum and the way they are treated by society, we have to inspire change in the views and actions of neurotypicals towards those who are autistic.

I’ve watched the Meet Julia clip of Sesame Street about a dozen times and it fills me with joy each time. Kids who watch it could learn a lot from it and change their view of autistic people as a result. There are some adults in my life who could also stand to watch and learn from it but unfortunately I know it wouldn’t change their views. They’ve become set in their views and ways.  Yet kids have the capacity to be much more tolerant and accepting than adults, especially if they are taught acceptance and tolerance from an early age.

At one point in the scene Alan explains that Julia flaps her hands in excitement. A lot of people think I flap my hands because I’m excited or am experiencing some other intense emotion but usually I’m just fulfilling a physiological need and it has nothing to do with emotion.  Yet after I watched the Meet Julia episode of Sesame Street and thought about what it could mean for the future of those on the spectrum, I did flap my hands in excitement.

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The Problem with Being Smart and Stupid at the Same Time

I have been told many times in my life by many people that I am very smart. Telling someone that they’re smart is generally considered to be one of the highest compliments you can pay them and usually when people tell me that I’m smart they do just mean it as a compliment but sometimes there’s more to it than that. Sometimes the declaration that I am smart contains a certain subtext or is followed by certain other declarations about me.

It goes something like this: You are too smart to have a learning disability. You are too smart to have a developmental disability. You are too smart to behave in the manner that you do. You are too smart to have the kinds of problems that you do.You are too smart to struggle with such basic skills. You are too smart to require the kind of help you are requesting. You are lazy, you are rude, you are not trying hard enough. You are mistaken about your diagnosis, you are using your disability as an excuse.

How does one define intelligence?  A classic measurement of intelligence is the IQ test. This test is divided in to a verbal IQ and a performance IQ. Usually one’s verbal IQ score and one’s performance IQ are similar. A 10 point difference between one’s verbal IQ and performance IQ is considered to be significant. I have a 60 point difference between my verbal IQ and my performance IQ (the verbal IQ is the one that’s much higher.) The neurologist who tested me said it was one of the largest discrepancies he had ever seen and because it was so large giving me an overall IQ score was essentially meaningless.

The discrepancy between my verbal and performance IQ as well as the struggles I’d faced throughout my life led to me being diagnosed with Nonverbal Learning Disorder. NLD is characterized by deficits in visual spatial skills, motor skills and social skills. It is also characterized by excellent memory, vocabulary and verbal skills.

I am someone who speaks and writes eloquently. I communicate insightful ideas in an articulate manner, I use big words and I spell those words correctly. I remember pretty much everything that was ever said to me and that ever happened to me. This leads many people to conclude that I am smart. They are not wrong about that but there’s also another side of me.

I am also someone who has never held a job or lived on my own. I am someone who struggles with tasks such as brushing my teeth,washing my hair and opening cans. I am someone who flaps my hands, jumps up and down and paces around in circles. The people who hear me speak or write first are often surprised to find out I’m disabled. The people who see me pacing around in circles or struggling with basic tasks first seem surprised when I start speaking in full sentences. The people who have seen me do all those things often have trouble reconciling those two sides of me. They often make false assumptions and come to false conclusions about me (see paragraph 2.)

You can’t entirely blame people for their false assumptions and conclusions. They work within their own context, draw on their own experiences and believe the things they’ve been conditioned to believe. The child who reads and writes well above her grade level is not consistent with the general perception of a child with a learning disability. It can be hard to understand why someone who expresses astonishing social insights for someone their age cannot maintain friendships with their peers. It can be hard to understand why someone who can produce the most brilliant essays, make the wittiest comments and win every argument cannot tie their shoes, button their pants or write legibly. It is easy and convenient to assume that if one can succeed at seemingly complex tasks, their failure to perform seemingly basic tasks is not due to any kind of lack of ability or disability but to laziness, rudeness, lack of caring or character flaws.

Not many people are knowledgeable about NLD.  Many people in the psychology and education fields have never heard of it. It’s not in the DSM and there’s debate over whether or not it’s a valid diagnostic category. When people hear the term Nonverbal Learning Disability, they tend to assume it means you cannot talk when on the contrary many people with NLD are very verbal.

Nonverbal refers to the fact that NLD does not impair one’s verbal abilities but one’s ability to process nonverbal information. The majority of learning disabilities are language based and when some people see that you excel at language they act as though NLD stands for Not Learning Disabled. Nonverbal learning disabilities are significantly more debilitating than language based learning disabilities but there is less awareness of them and less services dedicated to helping those affected by them. I struggled in public school and was put in a school for the learning disabled for a trial period but my parents were told that since their school dealt with kids who had language based disabilities there wasn’t much they could do for me. When I applied to colleges I got in to most of the colleges I applied to but I got rejected by all of the learning disability programs I applied to. The rejection letters essentially said “Sorry, you are not eligible for our services because NLD is not a real learning disability.”

Before I received my NLD diagnosis at age 12 a few other diagnoses were considered for me. Autism was not one of them. In those days autism diagnoses were mostly reserved for the more severely impaired individuals who were greatly limited in their ability to use language. These days autism is thought of more as a spectrum disorder with varying symptoms and levels of severity. My stereotyped movements are not generally considered to be a symptom of NLD but they are considered to be a symptom of autism.

Some consider NLD to be an autism spectrum disorder, others don’t.The Division of Developmental Disabilities considers NLD to be “just a learning disability” and thus I am ineligible for disability payments from them unless I get tested and get an official autism diagnosis. That test costs a few thousand dollars.

Now I tend to tell people I’m on the autism spectrum. At least most people are familiar with autism, are inclined to take it seriously and have some knowledge about it. The problem is a lot of people do not know as much about autism as they think they do. Some people seem to think that knowing one or two people on the autism spectrum makes them an expert on autism but as the director of a program for young adults on the autism spectrum that I was in said “If you’ve met one person with autism, you’ve met one person with autism.”

I’ve had people insult me by telling me they know people on the autism spectrum who do not act like me so therefore I must be using my disability as an excuse and I’ve had people “compliment” me by telling me I don’t seem autistic. Accusing someone of using their disability as an excuse (especially if it’s a disability you do not have and are not well informed about) is just rude and presumptuous. “You don’t seem autistic”is usually well intentioned. A lot of neurotypical people seem to think it ranks right up there with “You’re so smart” as one of the highest compliments you can possibly pay someone on the autism spectrum but I’ve yet to encounter anyone on the autism spectrum who actually considers it to be a compliment.

A woman once came up to me to tell me that she’d heard I was on the autism spectrum and she’d been observing me for signs of autism but had not seen any. I was tempted to start shouting “Wapner, Wapner, three minutes to Wapner!” (It’s a Rainman reference) but I restrained myself.

Then there was the time I was at the gym with a group of other young adults on the autism spectrum. A guy who frequented the gym came up to me and started making conversation.  He talked about that group of people he saw me with. He said he’d seen some of them engage in odd movements and behaviors. This guy had caught me at a time when I happened to be sitting still and now that I was talking to him I was making an effort to stay still and “act normal” but if he’d watched me long enough he would have seen me engaging in “weird” behaviors similar to those of the peers I went to the gym with. “So, do you work with those people?'” he asked me. I’ll never forget the look on his face when I replied “No, I’m one of them.”

A lot of people expect and want there to be a sharper delineation between smart and stupid, weird and normal, us and them. The truth is that sometimes “weird” people are a lot like “normal”people in some ways and sometimes people are smart and stupid at the same time (please know that I’m using the word stupid in a tongue in cheek manner in much the same way I use the word crazy. I do not think having a learning or developmental disability equates to being stupid.)  That person sitting next to you in your college class who aced the test that the rest of the class bombed, wrote one of the best essays the professor has ever seen, and makes intelligent contributions to class discussions might be the same person who struggles to dress herself, prepare simple meals for herself and make small talk with her peers.

The truth is that sometimes people who appear brilliant and very competent in some ways, struggle in other ways and it’s not due to laziness, rudeness or character flaws. It’s due to a disability, a disability that is often not visible and is not very well known but is very real and very debilitating.

I outlined the three categories of dysfunction in NLD but there is a fourth category, one that is not an official category but might as well be,considering how common it is among those with NLD. People with NLD are prone to depression, anxiety, low self esteem and suicide. I’ve never attempted suicide (although I’ve certainly thought about it) but I can check off all those other boxes. There are organic neurological reasons that people with NLD are prone to psychopathology but a lot of it has to do with their life experiences and the way society tends to respond to them.

Misunderstood is a word frequently associated with NLD. There’s a popular article on NLD called The Misunderstood Child. In my online NLD support group we were asked to sum up NLD in one sentence. The person who summed it up best said “A lifetime of misunderstandings”.

The misunderstandings go both ways. You misunderstand other people all the time and other people misunderstand you all the time. It’s easy to internalize all the messages you get that you are lazy, rude, uncaring, weird, abnormal, defective, etc,  Since NLD often goes unrecognized and undiagnosed, a lot of people with NLD don’t know they have it. Since their intelligence and assets can in some ways mask and compensate for their deficits, there tends to be denial that there is a serious problem. Early intervention tends to be critical in disorders such as NLD  but unfortunately the window for early intervention tends to coincide with that time period where parents’ concerns about their child are dismissed. They’re told that the kid is just a little immature, a little behind but since they’re so smart they’re going to be just fine. Unfortunately those kinds of disorders don’t tend to get better with age. They tend to get worse.

It almost seems as though emotional problems are inevitable with NLD and as though having NLD is incompatible with having high self esteem. Your verbal intelligence does tend to be a source of self esteem and you may not want to tell anyone you have a disability but when it becomes a choice between having people make false negative assumptions about you and revealing that you have a disability, revealing that you have a disability seems like the more attractive option. You may not want any special help but when it becomes a choice between failing miserably and having a breakdown or revealing that you have a disability in order to get the help you need, getting the help you need is the more attractive option. When the validity of your struggles and your entitlement to help are denied based on your high verbal intelligence, you find yourself in this bizarre position of having your intelligence turned in to a weapon to be used against you and of feeling like you need to convince people that you’re not quite as competent as you seem.

Of course it’s also not fun when people assume you’re more impaired than you are and announcing your own disability to the world is one thing while having someone else announce it to the world for you is quite another thing.  A few years ago my beloved dog died suddenly in a tragic accident. The next day when I went on the train I thew up as a result of the grief I was experiencing. I know that the woman who announced to the train “There’s a young lady with special needs who’s sick and needs assistance”had good intentions but dear God, lady, did you have to make one of the worst days of my life even worse than it already was by publicly referring to me as  ‘special needs’? I wondered what exactly tipped her off that I had special needs and if she had any idea of the nature of my special needs. I wondered if she thought I was intellectually impaired.

I’ve said that the term “neurotypical privilege” needs to be more of a thing. I read a ‘neurotypical privilege checklist’ blog and the points that most resonated with me were “I am not expected to alter or suppress my natural ways of moving, interacting, or expressing emotion in most circumstances’ and ‘If I fail to alter or suppress my natural ways of moving, interacting, or expressing emotion, I do not fear public ridicule or exclusion because of this.’ Replace the words ‘alter and suppress’ with the word ‘explain’ and it’s still true.  Telling myself that all those ‘Are you okay?/ Why are you moving like that?’ questions I get when I go out in public are well intentioned doesn’t do much to ameliorate the discomfort they make me feel.

Despite my verbal prowess and the way I have with words, I cannot give anyone a long, through, eloquent explanation as to why I move, interact and express emotion in the ways that I do nor can I give a detailed explanation as to why I struggle in the ways that I do. If “I have a disability” won’t suffice as an answer, the best I can come up with is “Because my brain is wired differently than yours is” (and sometimes if the question is being asked in a rude or aggressive manner I feel like tacking on “Now please fuck off and leave me alone.”) No one knows for sure what causes NLD but in some cases it seems to be associated with brain damage/trauma. I did not experience any clearly identifiable brain injury or trauma in my life so maybe I just got lucky.

The terms high functioning autism and low functioning autism are controversial. What qualifies as high functioning vs low functioning is subjective, some people are high functioning is some areas but low functioning in others and the degree to which an individual is functioning in a given area can depend on the day. If high functioning is defined as having good verbal skills then I’m pretty high functioning. However, there are people with severely impaired verbal skills who are able to hold jobs whereas I have never been able to do that so in that respect those ‘low functioning’ people are higher functioning than I am.

There’s this unfortunate misconception among some that high functioning autism is not real autism. It’s just autism lite, the diet coke of autism. It just means being a little quirky and maybe having a really amazing special skill like being able to mentally calculate the first 1000 digits of pi. As long as you can talk and you aren’t smearing feces everywhere, it’s all good.

There’s no point in comparing high functioning and low functioning autism as if they’re competing against each other in the suffering Olympics but suffice it to say, there is plenty of suffering, struggle and hardship associated with high functioning autism. Yes, the ability to verbalize ones’ thoughts and feelings does serve as a protective factor against some of the emotional pain experienced by those on the lower functioning end of the autism spectrum who are unable to do so but it also comes at a price. If you can ‘pass for neurotypical’ in some areas some people expect you to pass for neurotypical in all areas and that’s just not possible. When they see that you have not only adequate but superior language skills, that you express yourself not just adequately but brilliantly, bring on the perplexity, the bafflement, the inability to understand this paradox of a person who seems so smart but struggles with the simple tasks most people take for granted. Follow it up with the accusations of being lazy, rude, spoiled, uncaring, of using one’s disability as an excuse, of being mistaken about ones’ diagnosis.

The accounts of real and hypothetical children with NLD are pretty heartbreaking to read.  They tell the story of a kid who’s very bright and develops an impressive vocabulary at an early age but who’s also physically and socially awkward. They tell of a kid who reads well above his grade level but who struggles to write his name, use scissors and draw simple shapes. They tell of a kid who impresses all the adults around him with his verbal intelligence but who cannot make friends with his peers. They tell of a kid who’s repeatedly criticized, picked on and bullied for reasons he does not understand and for behaviors he cannot help. They tell of a kid who becomes increasingly depressed, isolated and overwhelmed as the demands placed on him become increasingly complex. They tell of a kid who is left with little hope that things will ever get better, who has come to the conclusion that he lives in a world that is not structured to accommodate him.

If I feel sorry for myself for having a disability for too long, I start hating myself for indulging in self pity and sometimes I find myself annoyed by the ways in which other adults with NLD complain about their problems but when I read about the struggles children with NLD face (and most of the writing on learning disabilities focuses on children) I feel nothing but sadness and compassion for them. I struggled a lot as a child and I know I had it much easier than many other kids on the spectrum have it. People with NLD are often perceived as lacking compassion but that’s usually just another way in which they are misunderstood. Sometimes it’s much easier for them to be compassionate towards others than towards themselves.

I saw a long list of strategies for helping kids with NLD. The bottom of the list said “And most importantly: COMPASSION.” That is really what it comes down to in the end.  A lot of people are not compassionate towards those with NLD because they don’t understand the disorder and once they gain a greater understanding of it they become more compassionate. The state of the general knowledge and understanding of it as well as the support services available is still pretty abysmal but it’s better than it was years ago (one of those college disability support programs that rejected me on the basis that NLD was not a real learning disability now has a disability support program specifically dedicated to NLD and autism spectrum disorders.)  Unfortunately there are some people who just don’t want to be compassionate and you cannot force them to be. There are assholes who will go out of their way to make a person with NLD feel like shit and there are angels that will go out of their way to help them. I’ve encountered my fair share of both.

No one with NLD can expect to have an easy life but it’s not all pain and suffering. The verbal prowess that comes with NLD is your gift, your saving grace and your rallying cry  even when it does become a source of frustration in comparison to your abilities in other areas. It would be nice if I could be talented in all areas of life but given the choice I’d rather have excellent verbal skills and crappy fine motor skills than vice versa. At least having good verbal skills means that when someone decides to insult me for my impaired skills in other areas of life, I can deliver a clever comeback (even if it’s only in my head and after the fact.) That inability to tell or tolerate a social lie, which can spell disaster in certain social situations, also translates to a certain honesty, genuineness and integrity that you don’t see in many people and that even neurotypicals can appreciate.

Some say that NLD involves trouble understanding humor and that people with NLD tend to lack a sense of humor. People are people and not diagnoses though so I can say that sense of humor has never been a problem for me (some of the funniest people I’ve known have been on the autism spectrum.). And thank goodness for that because if I wasn’t able to have a sense of humor about all my struggles and painful experiences, I’d be even more of an emotional wreck than I already am. I’m also thinking my sense of humor is the only reason certain people like me, are willing to put up with me or have refrained from killing me.

I do struggle with certain social skills and as a child I struggled with making friends but the ability to make and keep friends was a skill I was able to develop with age. Once again, thank goodness for that because without friends I’m even more of an emotional wreck. I’ll probably never be in the position of hiring someone for a job but when it comes to making friends I’ve learned not to discriminate based on age, sex, race, religion, disability or species for that matter. When it can be so hard to find a friend who accepts you for who you are there’s no point in limiting your pool even further. I’ve learned to be accepting and forgiving and not to judge anyone based on what other people think. God knows there are plenty of things I get judged for and plenty of people have expressed ideas about me that are not true, kind or necessary.

Sometimes I feel as though I live on an entirely different plane of existence than my neurotypical friends and peers. There have been times when that chasm between us has felt so deep and so unbridgeable, when I’ve felt so sure that they would judge me and be disappointed in me, that I’ve withdrawn in shame. There have been times when I’ve felt so sure that they did not understand me, that they could not relate to me, that I’ve lashed out in frustration. Yet there have always been people who love me unconditionally, who are willing to forgive, to try to understand, to reach across that chasm. And sometimes that chasm isn’t quite as deep as it seems.

The insults/complisults/ expressions of concern I get as a result of my disability tend to fall in to three main categories. 1. It’s pointed out to me that I don’t act normal 2. I’m told that it’s a shame that my life is the way it is because I’m so smart and have so much potential. 3. I’m compared to a child.

No one needs to point out to me that I’m not normal. I figured that out a very long time ago. Others have tried to comfort me by telling me that normal is relative and normal is boring. I have mixed feelings about that. On the one hand it seems like a rather dismissive thing to say to anyone with a developmental disability because there are absolutely societal standards of normal and they absolutely tend to deviate from those standards in a way that is generally considered to be unacceptable. Plus many people would rather be boring than have to suffer. On the other hand, I can appreciate the truth in that statement. A person on the autism spectrum is behaving in a way that is normal for the brain that they have. They just happen to have a type of brain that is in the minority. If they started a community where the majority of people had autism they could lecture all those neurotypical people about how abnormal they are. And I do appreciate being interesting even when it comes with suffering.

Being told that it’s a shame that I’ve wasted my potential when I’m so smart? Oy, that’s a tough one. It’s the kind of thing that makes me want to curl up in a ball and cry forever. It causes me a lot of shame, sadness and guilt. I know that in some peoples’ eyes (and often in my eyes as well) I’m a loser, a failure, a parasite and a spoiled brat. I look at some of the people who are wildly successful and I know that in some ways I’m much smarter than they are so I should be just as successful but I also know that in other ways I’m much stupider than they are.

Yes, the past is the past and every day is a new day but the past affects the future. There are bridges that have been burned, permanent self inflicted emotional scars that have been left on me and years of my life I will never get back. Can I make myself the helpless victim of a disability and thus validate the people who accuse me of using it as an excuse? From the tangled knot of the past can I unweave the biology that was my destiny from the bad choices that I was ultimately responsible for?  Was I in a world that wasn’t structured to accommodate me and if I’d gotten more support would I have made different choices? Some of my experiences are unique to me and my disability but I know that wondering about and wanting to change the unchangeable past is universal across all humanity .

Being compared to a child is hurtful because I know there’s a lot of truth in those comparisons but I also find humor in them. Honestly when I get compared to a teenager I almost take it as a compliment because I’m often compared to a 9-year-old, a 5-year-old or a 2-year-old. Yes, I am rather child like in my emotional outbursts, my inability to financially support myself or live on my own, to walk and chew gum at the same time, to sit still, to pay attention to things, to brush my teeth in a way that will prevent them from falling out, to shower without flooding the floor, to get the shampoo out of my hair, to keep my room clean, to button my shirt, to go a day without tripping over or bumping in to something, to eat without getting food everywhere but when’s the last time you saw a five-year-old write a blog like this?


























































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































































Just Say No to Secret Slacktivism

Just used my kids to get out of a speeding ticket.

Actually I don’t have kids and I don’t drive mostly due to autism spectrum related issues (which is not to say that no one on the autism spectrum can be a good driver or a good parent.) but I fell for one of those joke statuses and was asked to post a joke status of my own in honor of 2017 autism awareness.

I was also asked not to hate the person who sent it to me and not to reveal the secret. I don’t hate anyone who sends me those kinds of things but I do hate those kinds of things and I will reveal the secret because no disorder whether it be autism, cancer, depression, muscular dystrophy or anything else should be turned in to some silly secret facebook game in the name of raising awareness.

If you want to make a difference instead of choosing from 16 silly statuses to post, go learn 16 facts about autism, listen to the experiences of 16 people with autism, donate 16 dollars or 160 dollars to an autism related organization, volunteer 16 hours of your time to an organization that serves people with autism (make sure the facts you’re getting are accurate and that the organization is actually acting in the interests of people on the autism spectrum. There’s a lot of misinformation out there about autism and some organizations that are widely opposed by people who are actually on the spectrum.)

And remember, people on the autism spectrum want your acceptance more than they want your awareness.

A Book I Read in 2016: Life, Animated

The 26th book I read in 2016 was Life, Animated by Ron Suskind. This book is written by the father of an autistic boy. It tells the story of how his son Owen learned to communicate with people and understand the world through lessons drawn from animated Disney movies,which he has an intense love for. The problem with many books by the parents of autistic children is that the parents are not professional writers and thus their books are not very well written. Ron Suskind is an award winning journalist so this book is well written. The story itself is pretty amazing. It warmed my heart and it broke my heart. I found the way Owen was able to connect with people and learn about life through Disney characters fascinating.

I read a New York Times review of this book that caused an intense negative emotional reaction in me because of my own personal issues but my personal issues aside, I found the way the last part of it was written to be rather obnoxious.  First it said that one of the flaws of the book is that there’s only so much talk about Disney characters a neurotypical reader can cheerfully take. Well, I guess since I’m not a neurotypical reader that wasn’t a problem for me.It said that the other flaw was that the book didn’t have the perfect happy fairy tale ending one would expect considering it centered around Disney characters. The review ended by saying that in real life, unlike in Disney, only some dreams come true.

Maybe I’m just smarter and more perceptive than the average reader but I was aware that real life is not like Disney before the reviewer so helpfully pointed that out and I harbored no illusions that this book would turn out like a Disney movie just because it dealt with Disney characters. Before coming to the brilliant conclusion that real life is not like a Disney movie, the reviewer pointed out that Owen has not achieved his dream of becoming a famous animator, his romantic relationship is unlikely to lead where a parent might hope, his time away at “college” does not correspond to what we think of as the typical college experience and he might never make it fully on his own.

So, at 25 Owen does not have a job that makes him rich and famous, his first romantic relationship probably won’t end in marriage, he has not received a bachelors degree from an accredited university that hosts a lot of drunken frat parties and he might need some help to get by in life. How very tragic. God knows there aren’t plenty of neurotypical 25 year olds in that same boat. There’s just nothing sadder than living a life that in some way deviates from the typical expectations that certain other people who are not living your life have! Then again, I don’t recall any of those Disney heroes going to college…

In case you couldn’t tell, that review hit a nerve with me. The movie did too. I didn’t like it nearly as much as I liked the book. It was presented mostly as a coming of age story and didn’t go in to great detail about the ways in which Owen used Disney characters to make sense of the social world like the book did. The movie also seemed rather exploitative of Owen and his girlfriend. Watching some of the recorded scenes between and about them made me uncomfortable. Owen’s girlfriend breaks up with him and I can’t help but wonder if the production of the movie had something to do with it. If my boyfriend’s brother was talking to him about french kissing me and those conversations were being broadcast to the world, I would have been out of there too.

Anyway, even though I wasn’t all that pleased with the movie or with some of the reviews of the book, I was very pleased with the book itself. Even though Owen is on a different end of the autism spectrum than I’m on, I could relate to a lot of his feelings and experiences. The book has inspired me to write a series of blogs about how I used animals to connect with the human social world but I have to warn you, my story doesn’t have a perfect, happy, Disney fairy tale ending wither.

A Night at the Bookstore

“Excuse me, do you mind me asking what that’s all about?” the man at Barnes & Noble asks me as he glances up from his magazine.

“What what’s all about?” I reply

“The pacing.”

“It’s just something I do.”

“But why do you it?”

“I’m on the autism spectrum”

‘Oh, okay.”

The truth is that as soon as the guy asked “What’s that all about?”I knew exactly what he was referring to. People question my pacing on a regular basis. Last month in the coffee shop a woman came up to me and asked if I was okay. When I replied that yes, I was okay, she gave me an incredulous look. The month before that a waitress asked my mom if she was watching me.

You’d think that after 31 years of being questioned about my pacing, fidgeting and flapping I’d have gotten used to it by now. And yet it upsets me every time. When I walk away from that guy I still feel upset. I can feel tears coming and I become lost in thought.

I’m just so sick of being asked that question and I never know how to answer it. How do you explain to someone why you do something that comes as naturally to you as breathing? How do you explain a need and an urge that has been with you for as long as you can remember?

What I really want to do is ask those people the counter question of “Why don’t you pace?” The vast majority of the population does not pace, flap or fidget to the extent that I do so that would not be considered a valid question in the eyes of most people but in my eyes it is a perfectly valid question. From a physiological perspective, the fact that other people don’t engage in those behaviors is as utterly incomprehensible to me as the fact that I do engage in those behaviors is to them. I do not know what it is like to not feel the constant urge to pace, fidget and move. I will never know what that is like.

There are a few theories as to why people on the autism spectrum tend to engage in what is called stereotypic or self stimulatory behavior (I refuse to call it stimming because I hate that word just like I hate the word selfie. I have issues with neologisms that remind me of masturbation.) One theory is that it provides sensory stimulation to a person who is hyposensitive. Because of some dysfunctional system in the brain the body craves stimulation and engaging in those behaviors arouses the nervous system. The behaviors may release beta-endorphins in the body that provide internal pleasure.Another theory is that these behaviors are used to calm a person who is hypersensitive. They engage in those behaviors to block out an overstimulating environment that is sending them in to a state of sensory overload. (Information courtesy of

I’m pretty sure I fall in to the first category but most people think I pace because I’m anxious. Sometimes I do pace when I’m anxious but I also pace when I’m happy, excited, angry, contemplative or experiencing various other emotions. Intense emotions can exacerbate it but it is not primarily driven by emotions.  It’s a basic physiological need. I’m tempted to compare it to eating and sleeping but that’s not the best comparison. I can go much longer without eating or sleeping than I can without engaging in self stimulatory behavior. There really is no good comparison.

If I have this much trouble articulating my reasons for my behavior as an adult, you can imagine how much trouble I had articulating them as a child. For most of my childhood I knew nothing about dysfunctional nervous systems or beta endorphins.  For most of my childhood I did not know what kind of disability I had. Therefore when asked why I flapped, paced and fidgeted, I couldn’t give much of an answer beyond “I don’t know. I just like to do it.”

Sometimes I was not just questioned about my behaviors. I was judged and ostracized for them. I was treated rudely and cruelly because of them. Sometimes I had trouble telling the difference between rudeness, cruelty, curiosity and concern.

I remember when my friend’s mom decided my friend and I shouldn’t play together anymore because she was afraid the flapping might be contagious. I remember when a girl came up to me on the playground  and said “Why are you flapping, little bird?” Then she proceeded to run around in circles flapping her arms in mockery of me. I remember when another girl called me a twitching bitch. My brother was usually kind to me but when he wanted to hit me where it hurt, he would bring up my stereotypic behaviors, tell me how weird they were and that they indicated I had serious problems.

I was a curious child who had a habit of taking the reports written about me by doctors, teachers and psychologists out of my mom’s filing cabinets and reading them. The section of the reports that talked about how I flapped, paced and touched my lips for most of the time I was being observed made me cry. Of course those reports were being written in an effort to help me but at the time I did not understand that. I just saw it as yet another person complaining that my way of being was unacceptable and this time it was immortalized in writing.

My stereotyped behaviors always made me feel abnormal and isolated, like I stood out from everyone else in a bad way.  I did not feel accepted or respected by my peers.Of course aside from that, being on the autism spectrum comes with all kinds of other problems, differences and deficits so unsurprisingly I was a shy kid with low self esteem.

Fortunately, while I had many deficits, I also had some strengths. I discovered one of those strengths when I was enrolled in a theater summer camp. I tended not to talk or interact  much with my peers but when I was put on stage I came alive. When I performed comedy improvisation I would have the audience laughing hysterically and when I performed dramatic scenes I’d move the audience to tears. My instructors frequently told me that I was one of the most talented campers they had ever seen and my peers often complimented me on my acting abilities as well. For once in my life I felt like I stood out from my peers in a good way, that I was respected and admired by them. Then one day a fellow camper says to me “My mother thinks you’re a very weird person. She’s seen you jumping around in front of your house. She says you have Tourettes.”

I actually was diagnosed with Tourettes at one point but that was not an accurate diagnosis. A Tourettes diagnosis requires the presence of vocal tics and I’ve never had any vocal tics.The doctor who gave me that diagnosis was just looking for a way to explain my stereotyped behaviors and Tourettes was the best he could come up with. ( I really feel for anyone who has Tourettes. I can only imagine how hard it must be to have to cope with vocal tics in addition to physical ones. It’s also considered socially acceptable to mock and poke fun at Tourettes in a way that it’s not considered acceptable to mock most other disabilities. When I did improvisational comedy the audience would ask the actors to impersonate someone with Tourettes. I can only imagine what the reaction would have been if they’d been asked to impersonate someone with autism or Down Syndrome.)

I was not going to be diagnosed as being on the autism spectrum because back then autism was thought of differently than it is now. There was no way an autism spectrum diagnosis would even be considered for someone who spoke and wrote as eloquently as I did.

Now I need to be evaluated so I can get an official autism spectrum diagnosis because the Division of Developmental Disabilities has decided I “just have a learning disability” and that does not entitle me to services. I do not meet some of the diagnosis criteria that is typically associated with autism but I think I’ll be able to get an autism spectrum disorder diagnosis because of the stereotypic behavior. The flapping, pacing and toe walking that I engaged in as a little kid and still engage in now are classic autism.

The terms high functioning and low functioning are controversial but I would be classified as being on the high functioning end of the autism spectrum. I know there are people who are as high functioning as I am and who engage in self stimulatory behavior to the extent that I do but I have never met those people.  When I was at a residential program for young adults on the high functioning end of the autism spectrum there were a few residents who engaged in sterotyped behaviors but most of them did not and no one did the kind of things I did with the frequency that I did them. Some of them were as baffled and annoyed by my behaviors as neurotypical people tend to be.

Almost everyone, even neurotypical people, engages in self stimulation of some kind such as foot tapping, hair twirling or nail biting but when you have the kind of self stimulatory behavior that is generally considered to be normal or socially acceptable in form and degree, you’re going to have a different life experience from someone like me.

When that guy at the bookstore asked me what my pacing was about I had been reading a novel. The main character was a social outcast who was often perceived by others as being weird, crazy or dangerous and I was thinking about how much I could relate to that feeling but before I was reading the novel, I was looking at the books on autism, as I often do when I go to Barnes & Noble. When I check the table of contents of those books I usually have trouble finding the section that addresses stereotypic behaviors. When I do find it,there usually isn’t more than a paragraph or two about it. If the book focuses on high functioning autism, the section on stereotypic behaviors may be nonexistent.

When I read the proposed treatments and solutions for stereotypic behaviors my reaction tends to either be “Been there, done that” or “So glad I didn’t go there and do that.” I’ve been on a lot of different medications. Some of the medications have reduced the sterotypic behaviors and some have increased them. None have eliminated them. I do try to channel my energy through exercise. I have a trampoline in my backyard. It’s great and I love it but it’s not enough to stop me from engaging in stereotypic behaviors when I don’t have access to a trampoline.It’s been suggested that people only engage in stereotypic behaviors in private. Well, sometimes life requires you to be in public for long periods of time and you just can’t go that long without feeling the urge to move around. Sometimes privacy means not just the privacy of your own home but the privacy of your own room because you live with people who find your pacing unacceptable.  One of the books I read suggests dealing with kids who exhibit stereotypic behaviors by attempting to help them engage in imaginative play and use language instead. I’ve never suffered from a lack of imagination and I’ve never had a problem with language so that obviously doesn’t apply to me.

Applied Behavioral Analysis is another thing that is controversial in the autism community.  I hear ABA has worked wonders on some children with autism and I find it unfortunate that some of the effective interventions for autism spectrum disorders were not around when I was a small child but I can’t imagine I would have enjoyed or benefited from ABA if it was used to address my stereotypic behaviors. I can’t imagine responding well to having suppression of my natural urges exchanged for a handful of Skittles. The website says that researchers have found that stereotypic behaviors interfere with learning and attention. Speaking for myself, I can say that what interferes with attention more than my stereotypic behaviors is,well, my inability to pay attention. The article goes on to say that interestingly, these behaviors serve as positive reinforcers if an individual is allowed to engage in them after completing a task. I’m glad the researchers find it interesting but interesting is not the word I would use to describe having my natural behaviors turned in to positive reinforcers.

It’s been suggested that people who have stererotypic behaviors that are problematic substitute those behaviors with behaviors that are more socially acceptable. The sad thing is that the kinds of behaviors I engage in are the ones that the autism experts generally deem to be socially acceptable but I’ve encountered many people in my life who find them unacceptable. A suggestion I saw given was that a kid who bit his arm should chew on a rubber tube instead. When I was in school I would sometimes twirl a rubber band in class. One day my math teacher said to me in front of the whole class “Why are you always playing with that string? It drives me crazy!”

Yet another controversy in the autism community is whether or not people on the autism spectrum should be allowed to engage in self stimulatory  behavior. I have issues with the  word allowed  being used in this context because I’m  not sure anyone has the right to make such a decision for someone else, even when we’re talking about children. Self stimulatory behavior is often not entirely under an autistic person’s control and  sometimes the control they have over those behaviors is quite limited if it’s even there at all. Obviously I’m biased on this matter but as long as they’re not harming themselves or anyone else, I think people on the autism spectrum should be allowed to engage in self stimulatory behaviors.

There are people who are annoyed by my pacing and fidgeting but I don’t consider being annoyed to be the same as being harmed. Some people say I need to refrain from engaging in those behaviors because it makes them uncomfortable. What about how uncomfortable it makes me to not be able to engage in those behaviors? Some people on the autism spectrum have sensory issues that cause them to be really bothered by the kinds of noises, smells,sights, textures etc, that they encounter on a regular basis. Should the people who engage in behaviors that aggravate an autistic person’s sensory issues cease the activities they need or want to do whenever the autistic person is around?

I have some control over my stereotypic behaviors and I’m willing to try to tone them down or do them somewhere else if it’s really bothering someone but I don’t have complete control over them. Sometimes I engage in them without thinking about it, especially if I’m intensely thinking about something else. If I’m thinking  happy, positive thought it sucks to have my good moment ruined by someone calling me out on my pacing and if I’m having negative thoughts it sucks to have my bad moment made even worse. Sometimes at a social event people will say to me “You’re pacing. Are you anxious?” Well, if I wasn’t before, I am now.

Unfortunately cruelty and mockery are not limited to schoolyard bullies. I’ve had adults who are old enough to be grandparents mock my movements and tell me I should be institutionalized because of them. Sometimes they so very helpfully inform me that it’s not something normal people do. Those people are essentially congratulating themselves on being born with a nervous system that is wired differently than mine is. I had no choice in the kind of brain or nervous system I got and if I did have a choice I would never have chosen a dysfunctional kind that subjects me to ridicule.

I don’t feel too sorry for anyone who is annoyed by my stererotypic behavior or the stereotypic behaviors of anyone else on the autism spectrum. In fact I envy them. I envy them for their ability to walk away from me and my annoying stereotypic behaviors and then not have to deal with them for a while. I do not have such a luxury. I envy them that the worst they’re going to feel is annoyed for a short period of time, while I’ve gotten to feel hurt, rejected, defective, isolated, alienated and ostracized my whole life. I don’t envy the people who mock and disparage me for my behaviors too much though because they are being narrow minded and they are being cruel and I do not aspire to be narrow minded or cruel.

Some people say that autism spectrum disorders are not in and of themselves painful or problematic. It’s the having to live in a world that does not understand, accept or accommodate autistic people that presents the problem. This is true of my stereotypic behaviors. In and of themselves they are pleasurable but the reaction I get to them causes me emotional pain. When from an early age you are told that your natural way of being is weird, abnormal, annoying, unacceptable, unfathomable and in need of change it damages your self esteem and your self image in a way that can never be be repaired.

Anyway, back to the bookstore.  As I’m thinking some of these thoughts and tearing up, what am I doing? Pacing. I decide to go outside and call my mother. I certainly wouldn’t get any sympathy or understanding on this issue from my father.  On the way to the bookstore he told me that I needed to stop all my pacing and twitching because if the people at the bookstore saw me do that they’d think I was an escaped mental patient and would throw me in an institution. I told him I didn’t think it would be legal to do that.

There are no legal regulations on people making or asking rude or hurtful comments or questions though. I’m not sure why that guy asked me that question. Maybe he was an asshole, maybe he was just curious, maybe he was worried that there was something wrong with me, maybe he was worried that I was pacing for some nefarious reason, maybe he just wanted to talk to me, maybe he didn’t realize how upsetting I’d find such a question, maybe he was on the autism spectrum himself. Who knows. If there’s any benefit of the doubt to be given it’s usually best to give it but sometimes regardless of the other person’s intentions,  the result is the same.  I feel embarrassed and uncomfortable. I’ve received another reminder that I just don’t fit in in society, that people think I’m strange, that they find my behavior unsettling and questionable, that I’m being watched, judged and wondered about.

When I call my mother she doesn’t pick up so I decide to go back inside and force myself to sit on a chair. That way I won’t pace. A few minutes later my mom calls me back. She can hear that I’m upset and asks what happened. I begin to tell her but decide this is not a conversation I want to have in front of everyone so I go back outside.

“A guy asked me why I was pacing and I didn’t know what to say.”

“Just tell him you’re on the autism spectrum.”

“I did tell him that but I don’t like having to divulge my disability to a stranger.”

“It’s nothing to be embarrassed about. If you tell people that they’ll feel sorry they asked.”

“He didn’t say he was sorry.”

“I’m sure he really was sorry. People just feel awkward when you tell them that and they don’t know what to say either.”

I go to the bookstore frequently. It’s one of my favorite places and I tend to spend long periods of time there. That’s where I tend to get lost in thought and lost in books. Hence, I tend to pace a lot and get a lot of looks from people. I’m not the only person who comes in to that bookstore with some aspect of their appearance or behavior that deviates from what is typically perceived as the societal norm. I see men wearing dresses, people with green hair, people with missing limbs, people in wheelchairs, people with service dogs, people who shout, people who talk to themselves, people who repeatedly utter non-language vocalizations, people who make unrecognizable hand symbols etc,  I would not question any of those people about their appearance or behavior but I know others would. Some people wouldn’t see my pacing or fidgeting as comparable to the differences of those people but others would.

It seems apparent to me that some of those people have some sort of mental illness or disability but sometimes the criteria for what even qualifies as a mental illness or disability is subjective and ideas about that change among health professionals and among society. Ideas about what is considered normal, healthy behavior and what is considered abnormal, unhealthy behavior , what behavior should be accepted and tolerated, what behavior should be condemned, what behavior should be addressed and modified, are also subjective and subject to change.

Not everyone in my life has been intolerant or bothered by my sterotypic behaviors. Some people are tolerant and understanding. Some people even find them kind of endearing.

The conversation with my mother turns to an upcoming author event at the bookstore and how I’m going to get to it. Concerns are expressed about me navigating public transportation, locking the doors of the house and spending the night alone. I realize that it’s not really normal, healthy or desirable for someone my age to be struggling with issues like that even though such struggles may not be uncommon for people on the autism spectrum. I feel like there’s hope for those issues though. With some more practice, training and therapy, I can get better at and more comfortable with taking care of myself and exercising some independence. I don’t feel like there’s much hope for the stereotypic behaviors though. I will continue to pace, jump, flap and fidget and other people will continue to make comments about it. I can’t stop myself from engaging in self stimulation and I can’t stop people from being who they are. I just have to figure out the best way to deal with it verbally, mentally and emotionally. It’s not like I can refrain from going out in public or stay away from the best place on earth, the bookstore.

That night at the bookstore before I became absorbed in my novel I was thinking that perhaps I would finish reading that book tonight and then work on a blog post about books I read recently. As I stand outside the bookstore I realize I won’t finish reading my novel tonight and decide that tonight I’ll start working on a different kind of blog post. And then I pace.