2023 Update

This is a personal blog started in 2011. It is no longer active, updated, or maintained. Unfortunately, it appears that I've also irreparably broken some of the links by accident.
Showing posts with label autism acceptance. Show all posts
Showing posts with label autism acceptance. Show all posts

12 December 2015

Why do I think I'm autistic . . .

This was actually originally a question on a survey as part of a research study (which asked me why do I consider myself to be autistic, in addition to having once been handed an on-paper diagnosis, which yes is a class privilege to be able to get), but my answer ended up being so long-winded that I'm going to put it here, just in case it's helpful to anyone who might be out there questioning and wondering whether they might be autistic.

(This is totally unscientific and unempirical, but based on anecdotal observations from conversations with hundreds/thousands of other autistic people -- both with formal diagnoses and without them, both speaking and nonspeaking, etc. -- it just seems that all of these characteristics are *more common* in autistic people than they are in nonautistic people, and that the more of these kinds of characteristics someone has, the more likely they are to be autistic. Obviously anyone who isn't autistic -- which includes neurodivergent people who aren't autistic -- could have any one or more of these characteristics too. And of course, there are characteristics of being autistic that seem to be really common in autistic people, especially as compared to nonautistic people, that I don't have.)

Like many (but of course, not all) autistic people, I ...

- Keep an erratic sleeping schedule, and am often nocturnal by both instinct and preference.

- Absolutely suck at executive functioning, which involves planning tasks, prioritizing tasks, initiating tasks, following through on tasks, meeting deadlines, organizing complex multi-step tasks, etc.

- Have very uneven skills academically, but present as conventionally "gifted." I functioned really, really well academically from K - 12, and then when I went to college, a lot of coping skills died. I developed some stuff, sure, but I know some stuff went straight out the window too, because huge changes, and also almost total lack of structure/scaffolding. ("Now you're an adult, and you must be totally independent, and if you can't do that, too bad f u.")

- Have hypersensitivities in all my senses (to noises, to smells, to tastes/textures, to touch/tactile sensation, to sights), which create both (1) sensory-seeking opportunities (I still rub a silk sleeve over my face -- the very same one I've had since I was 3 and I'm now 22; also, tassels tassels tassels -- yes I did in fact get a picture of myself inside the White House rubbing a tassel there all over my face) and (2) sensory-averse reactions (I am physically hurt by a lot of fluorescent lights; also, touching me lightly -- not firmly -- hurts).

- Tend to be more oblivious to surroundings/background information/implied knowledge. (This includes social knowledge -- everyone else picks up on updates in people's lives/doings much sooner than me; spatial knowledge -- I can't recognize the same location in the dark versus in the light and also won't realize that objects/buildings/things exist unless they're explicitly pointed out to me; etc.)

- Frequently speak in circles, because I have extreme frustration when I believe the other person/people do not understand what I'm trying to communicate, so I attempt to rephrase (and can rephrase an infinite number of times, and go on for-fucking-ever with this unless stopped).

- Take great pleasure out of intense fascination with particular topic areas in ways that non-autistic people often do not.

- Relate to other people (and show that I care about them) specifically by seeking out gifts/activities/internet memes/other tangible or observable things that relate directly to their preferred interests or activities, but am often perceived as just creepy or weird by non-autistic people for doing this.

- Absolutely hate crowds and crowded locations because they're overwhelming and drain me of energy to start, do, or finish things, or just to concentrate, or just to survive.

- Occasionally lose the ability to produce oral speech even though I usually have the ability to use oral speech, especially when under extreme stress or exhaustion.

- Stim, like by using my tongue around my mouth in specific ways, or touching specific kinds of textures, or spinning in circles for a long time, or playing with water forever, including in fountains attached to government buildings, which results in being yelled at by security. (I stim when I'm anxious, when I'm bored, when I'm upset, when I'm happy, or when I'm excited. Also when I'm trying to communicate to another autistic person that I exist and am also autistic.)

- Tend to like certain types of structure and routine in ways that are not typical for non-autistic people. For example, whether playing with toy cars, Barbie or Bratz dolls, or Star Wars action figures, I would always line up all of the figures in specific orders/formations and three-dimensional spatial locations in my play area that almost never changed, which confused the hell out of all of my non-autistic friends/playmates. In another example, I'm also totally okay with eating literally *the exact same thing* for every meal for months on end, and this does not bother me.

- Extremely detail-oriented. For example, I write novels and do collaborative writing style roleplaying, and in both, I typically develop in immense detail aspects of constructed languages, socio-economic-political systems, cultural norms/histories, etc., as well as populating worlds (both those based on the real world and those that are totally sci-fi or fantasy settings) with hundreds or thousands of characters thought out in depth.

- Am highly attracted to and empathetic with animals (like cats and dogs) and fictional characters, which I feel are like real people and whom I care about in the same way I do as real people.

- Tend to take an incredibly long time to develop close friendships with people, and am constantly afraid of losing any of the friends that I have, because many of my closest friends in the past aren't my friends anymore (often but not always because they decided to not be my friend because I wasn't cool).

- Was severely bullied throughout school, both by other students and sometimes by teachers, for being an obvious weirdo. I'm usually perceived as out of touch, socially awkward, weird, abnormal, and just not with it when compared to a lot of my peers.

- Won't shut up when I really care about something, and am often perceived as arrogant, stuck-up, a know-it-all, full of myself, showing off, etc. even though I'm just trying to share information that I think the other person will care about or benefit from having.

- Don't really think in linguistic concepts/language. I think both visually and conceptually. So my thoughts happen in images (still pictures, moving videos, or four-dimensional fluid shapes/lines/fields/things-that-aren't-describable-but-I-probably-sound-like-I'm-under-the-influence-of-LSD-now) that represent concepts.

- Hate group work. With the burning passion of ten hundred thousand flaming suns gone supernova.

- Can be both hyposensitive (not that sensitive) or hypersensitive (so much sensitive) to pain. Like, I scream and cry when getting shots. But after having my wisdom teeth out, due to combination of apparent stoicism and serious sensory aversions to any pills ever and most liquid medications, didn't really take any pain meds once I went home.

- Tend to be either really good intuitively at doing a thing, or really, really suck, and I keep sucking at it in the same pattern of sucking at it.

- Think systematically or in patterns. See above. (Example: If I'm worried or anxious about something, I will repeatedly go over every possible outcome, from the best possible one to the worst most catastrophic one, and everything in between, in great detail as to how/why each could happen, and the likelihood of each outcome, but despite knowing rationally that the most catastrophic ones are usually not that likely, will still anxiously panic over the possibility they are true.)

- Rely on scripts (entire encounters, types of situations, for behavior, or for what to say, etc.) for like 95% of my interactions involving other people, including other autistic people.

- Really, really like the feeling of pressure against my body. I often sit with legs/ankles crossed so I feel the pressure, or with my hand between both knees (I've learned that people assume I'm sexually touching myself in public if it's any higher up my leg). I like to sit so that my legs/ankles/feet can press against the legs of chairs or tables. I like to fall asleep with my arms tucked under my torso. Weighted blankets are awesome.

- Have some super awesome fine/gross motor skills, and some totally sucky fine/gross motor skills. For example, I have highly calligraphic scripted handwriting, and do black and white drawings in pen only (no pencil involved ever) with highly detailed cross-hatching. But then again, I've never reliably learned how to tie my shoes or do monkey bars or jump rope or hula hoop like most other kids I grew up around did.

- See squiggly bright lines and dots of various constantly-shifting colors whenever I'm conscious, which includes as I'm falling asleep too. (I'm sighted, which means I'm neither blind nor low-vision -- not sure how/if blind or low-vision autistic people have these things.) Some people call them "the floaters."

- Always see the world in static (like the kind of "noise" that makes photos not great quality). Someone asked about this on the Facebook, and yes, I have the thing where I always have thought I was seeing molecules or something everywhere, in all lighting and wakefulness/sleepiness conditions, because the whole world is comprised of these tiny dots that make up literally everything I perceive visually.

- Have HIGHLY vivid, frequently narrative dreams, many of which I remember in incredibly detail. (Many of mine are also lucid.)

- Am synesthetic, meaning I experience many kinds of sensory input as *other* kinds of sensory input. Like, listening to music or even someone just talking, produces colors and shapes and yay.

- Will re-read or re-watch entire books or movies or tv shows -- or specific scenes in them -- that provoke deep, intense emotional reactions in me.

- Am highly empathetic to the point of over-empathizing. I may not always be able to process cognitively what I'm experiencing (see point below), but I am overwhelmed by the emotional responses of people around me -- which includes things I read on the internet, because I'm experiencing them as the other person does. (Not in the way of, I know how it is to be them when I'm not them or don't have the same experiences, but in the way of, their anger settles in me, or their sadness settles in me, and I can't get rid of it.)

- Have trouble identifying/naming and separating/distinguishing all of my emotions or even bodily sensations.

- Am not antisocial. I'm an introvert, but I display a lot of outwardly extroverted-seeming traits, like talking to lots of people, going to events with lots of people, and having people over my place. Social interaction can be fun (or can suck massively, depending on who is involved and what they do to/around me), but it's draining. I need lots of extra time to recover. This is true even if the other people involved are also autistic.

- Desire to have some amount of environmental control that it seems like nonautistics tend not to have (either in general, or as intensely). Like, I get really anxious if other people touch or move my belongings/possessions, even if they're people I know really well and trust in general.

- Show that I trust others by opening up to them, emotionally and about my experiences.

- Often feel marginal and like an outsider (not just because of various marginalized experiences/identities that I have) even when I theoretically should be able to belong to a particular group.

- Typically have gravitated to be friends with people who were significantly older or significantly younger than me, and not my age-peers.

- Tend to do activities the exact same way all the time (like how I make pasta sauce or mint hot chocolate) even when I learn a better/easier way to do them. This extends to what I order in restaurants. (I love trying new foods, actually, but if I know I have a favorite thing, why wouldn't I order my favorite thing? Why would I order a second or third favorite thing?)

- Experience distinct auditory processing disability stuff. I hate conference calls maybe almost as much as ISIS hates the existence of everyone-who-isn't-ISIS. I will almost never understand your name the first time you tell it to me unless it's also on the business card you're handing me or the name tag stuck to your shirt / hanging from your neck or the placard in front of your face. You have to repeat it.

- Can't recognize faces. (It's called prosopagnosia or faceblindness.) As a sighted person, yes, I do see your face. I am capable of seeing people next to each other and realizing they do not look identical, even if they present their gender very similarly, are close in age, have similarly sized/shaped bodies, and are from the same racial group. But I can't reliably tell people apart in sequence, or out of context from when/where/how I usually encounter them, or after a few days or weeks or months since regular contact. I can sometimes, to varying degrees of reliability, recognize people on other characteristics, like voice, manner of speaking, posture, body movement, other distinctive physical features, or hairstyle (including facial hair when someone has it), but not by face. I can also figure out if someone else knows me often by their body language (like prolonged eye contact, suddenly smiling, or referring/addressing me by name when I'm not wearing a nametag or ID), but I have no clue who they are and will *never* have the experience of feeling like I recognize someone but not remembering their name. Half the time I'm faking that I know who you are. Just tell me your name up front next time.

- Have significant trouble in group settings including purely social, unstructured ones. I can never tell if it's my turn to talk, or if there's an opening where it's okay to jump in with a comment/question/story in the convo, and frequently, by the time I figure it out, it's too late and suddenly I'm interrupting someone and have just become an accidental asshole.

- Collect random shit I don't actually need but am somehow convinced I will need later. Like receipts. Dating back to 2004. And fortunes from fortune cookies. And tags from clothes. Literally everything. All this totally useless stuff that it pains me to toss out because what if I need it one day.

- Have vastly varying periods of total distractibility where absolutely nothing happens even things that really should (like eating food) and periods of doing ALL the things!!!!!!!!!!1eleventyone where way too many things somehow happen. I don't reliably have the same abilities, skills, or energy/capacity to do the same things from one point in time to another.

- Can hyperfocus for hours at a time on ironing out the tiniest of details necessary to complete one activity/task, to the point where I forget that things like pissing/shitting/eating/drinking liquids are things that a body generally needs to do. For over 18 hours sometimes.

- Hate tags. Yes, tags. They are horrible. Why do people insist on putting them on clothes? Anywhere? Ever? But seriously, especially the really large, stiff ones in some shirts right where the neck is.

- Suffered for having my extremely thick, easily tangled hair (which used to be very long, especially as a kid), which meant I went through what both my partner and I call the Daily Torture Session. It was worse than just frustrating or annoying. It was actually painful and it sucked. And no one would believe me most of the time, because they assumed I was just exaggerating or being overly dramatic. But it's true.

- Often begin to talk louder and louder, especially when I'm excited about something (which can include being excited about knowing about something), without realizing it, or being aware of exactly how loud others perceive me as.

- Constantly grind my teeth or chew on my own tongue (to the side of my mouth). I'm not sure if it's a pressure-seeking thing, or another kind of sensory-seeking, or a specific kind of stimming, but it's been a thing my whole life, and was the reason I had to get a retainer when I was a kid. I know a lot of other autistic folks who bite or chew on their fingers, hands, or arms as well as or instead of doing the teeth grinding thing.

- Have a very powerful and strong, intuitive sense of justice and fairness. It hurts when something seems wrong, when someone seems like they're being fucked over. I usually immediately relate to and identify with the underdog or the outsider.

- Don't care much about certain types of reputation/outward perceptions of me (like, buck the system; think whatever you want to think; fly that freak flag high; I'm here and queer get used to it; I once showed up to a White House event in a t-shirt while everyone else was in Western Business Attire; etc.) but am also extremely anxious about what others think of me vis a vis my character, my integrity, whether I'm worth being/having around.

I'm sure there are many more, but another thing I have is anxiety around lists because I'm always wondering if I left something off the list (and usually do/did). (Bonus! If you keep coming to this page enough, you might notice I keep adding to this list, for the reason stated earlier in this paragraph!)

No really, I wasn't kidding about the White House tassel thing: 



From December 2013, inside the White House. Clearly the thing to do is to find the nearest large fluffy tassel and rub your face all over it in stim-heaven.

My original description:

The tassels on the drapes were SO STIMMY YAY. (Pretty sure this is not the normal way to act in the White House. OH WELL.)

A total stranger took this picture because I apparently was hilarious? So I got them to email it to me, for your viewing pleasure.

Photo by Nicole Shambourger.

Image: Me dressed in a dark pantsuit and patterned, embroidered red scarf, very happy, sticking my face into a giant tassel decoration on drapes in the Green Room of the White House.

***

If you are wondering or questioning whether you or someone you know might be autistic after reading this post, here are some resources that could be helpful:

24 March 2015

5 Ableist Reasons Autistic Bloggers Lag Behind


(Autistic tangent/photo description: So the title of this post contains the phrase "Ableist Reasons" and the word "Bloggers." I thought I'd find a picture of me typing on a laptop, but couldn't find one, so I settled for this photo of me at the University of Victoria in November 2014, giving a talk appropriately named "The Ableism Crisis: Violence, Marginality, and Disability Justice." So the slide says "The Ableism Crisis," which means I get to pretend it's related to this post, which I guess it is, if indirectly.) 

I've been in the autistic/autism blogging world for a few years now, and while there have certainly been folks at it for much longer than that, it's been more than long enough to notice this one trend: blogs mainly about autism written by non-autistic parents of autistic kids are much, much more likely to attract ridiculously large audiences than blogs mainly about autism written by actually autistic people.

This trend remains largely true even for autistic bloggers who've published their own books (or contributed to books), autistic bloggers who are also parents (whether of autistic or non-autistic kids), and autistic bloggers who post fairly frequently (which I've not been doing so much for the past year or so).

(There are only a handful of exceptions, including John Elder Robison, better known for the several books he's authored, and Landon Bryce's ThAutcast. And of course, it's important to mention that both John and Landon are white men.)

The purpose of this brief post isn't to rag on non-autistic parent bloggers, especially those who've been fantastic allies to the neurodiversity movement, but to discuss some of the deeper ableist reasons that autistic bloggers just can't match pace with non-autistic bloggers (parents being a main constituency, but certainly not the only category of non-autistic bloggers who write about autism). The purpose of this post is actually to talk about some of the deep-seated prejudices that result in the disparity in readership so we can start untangling and challenging them. These reasons are all related to each other, and not entirely separate, but worth talking about if allies (bloggers and readers alike) truly want to center the voices on autism that matter most -- those of actually autistic people.

1. Autistic bloggers are automatically suspect as frauds, especially if they self-identify.

Because of horrifically ableist ideas that autistic people are incapable of having ideas, a sense of our own selves, or emotions -- let alone cognitive grasp of other people's perspectives as separate from ours or the ability to express ideas of our own -- autistic bloggers will be accused of lying about being autistic or otherwise being fakes. Because of the monopoly of the psychiatry/medical-industrial complex over access to a diagnosis (and therefore "legitimacy" as autistic), autistic bloggers who self-identify as autistic but who don't have a medical diagnosis are especially at risk for accusations of fraud. But even autistic bloggers who do have formal medical diagnoses are frequently accused of lying about being autistic. After all, autistic people can't write words or communicate to others since we are so self-centered and locked inside our brains.

2a. Autistic bloggers are presumed to be exceptional instead of representative of many autistic people.

Even if an autistic blogger is believed about their status as autistic, they will be questioned about the applicability of their experiences, ideas, or opinions to any other autistic person. At best, their blog will be treated as an occasionally interesting foray into one autistic person's musings about their life while autistic -- in other words, treated as a personal interest story, but not a source of reliable information, theories worth thinking about, or direction for either supporting autistic people or advocating for changed policies/practices.

2b. This is closely related to the assumption that "if you can write on the internet / keep a blog / respond to these comments, you are very high-functioning and Not Like My Child.

(We know of course that that's not true, since autistic bloggers have a diverse array of skills, abilities, impairments, and support needs.) And of course, if you dismiss an autistic blogger as irrelevant because of their supposed "mild" or "high-functioning" autism (things that don't actually exist), you're not going to treat their blog as a reliable or authoritative source of information or ideas about autism.

3. Autistic bloggers are thought of as writing only about their personal experiences, whereas many parent bloggers are welcomed as writing about "universal" or "shared" experiences (which also ignores other axes of privilege/oppression).

Again, this is a common manifestation of oppression -- members of an oppressed group are denied collective identity or experience through a rhetoric of "individuality," while members of the relevant dominant group have their experiences privileged as universal and default. It's important to note that the most popular (non-autistic) parent bloggers also tend to be white and from middle and upper-class backgrounds, which most certainly contributes to continued erasure of autistic people of color and no/low-income autistic people.

4. Non-autistic "experts" have presumptive authority to speak about autism and autistic people, while actually autistic people have to "prove" they are even able to speak about themselves as individuals, let alone our group as a whole.

For this one, oppression plays out with the assumption that members of the dominant group are treated as automatic experts/authorities with "objective" opinions while members of the oppressed group are considered incapable of having opinions or ideas that are "objective" and therefore valid to people beyond their group. In other words, people assume that things like having the letters PhD after your name, being a special ed teacher, working as a therapist or clinician, or researching autism at a university automatically make your opinion "objective" and authoritative -- and therefore worth listening to. At the same time, people assume that being autistic means you are automatically "too close" to the issue, and thus personally biased, to have an "objective" opinion -- and therefore that everything you say should constantly be doubted and questioned, even if it's about your own personal experiences.

5. Autistic bloggers are believed not to exist.

It's the only possible explanation for so much of the hateful, dehumanizing rhetoric about autistic people all over the internet. (Actually, it isn't, but it's what I tell myself so as to not be completely pessimistic.) Autistic people are believed not to be reading articles about autism, and certainly not to be blogging about it. If you believe that autistic people cannot express ideas, you won't assume that any autistic people are actually writing about being autistic anywhere. You won't search for those blogs, and you won't find them. On the other hand, you will think to search for scientific research on autism, blogs by (presumed non-autistic) parents of autistic children, and advocacy organizations for autism (also presumably run by non-autistic people).

And there you go. Five ableist reasons autistic bloggers lag behind in audience numbers, stability, and growth.  An ongoing source of frustration throughout the autistic blogging community, and one whose numbers are even more sharply divided -- most of the prominent blogs by actually autistic people are still by white autistics, with only a handful of exceptions. We're here, we're writing, and we'd like to think we're not doing this as idle, futile exercises with no one around to care or keep reading.


08 March 2012

Letter to the parents of Autistic children

Note: If you are seriously considering suicide, please call the suicide hotline immediately at 1-800-273-8255. If you are seriously considering hurting or killing your Autistic child, please call the crisis hotline immediately at 713-468-5463



__________

To the parents of Autistic children:

We need you.

Sometimes in public discourse, Autistic adults and non-Autistic parents disagree over very important issues that affect each of us personally. Sometimes this disagreement is spectacularly explosive.

But there is no way for the autism and Autistic communities to move forward without creating some type of group cohesiveness. Yes, that means that we will have to enter into painful dialogue and discourse, and yes, that means we will have to accept the validity and legitimacy of the ideas and feelings of people with whom we may disagree. It does not mean that we have to set aside all of our differences, because that would make us self-deceivers. But it does mean that we have an obligation to each other and to ourselves to recognize what Dr. Martin Luther King Jr. called "inescapable mutuality."

Every Autistic child, youth, and adult had parents. Many of those parents were non-Autistic, and some were Autistic, and others were likely diagnosable as Autistic. Many, but not all, of those parents were good parents. Most had very good intentions and wanted what they understood to be the absolute best for their children. Others were abusive, emotionally or physically, and did not care much for their children's welfare.

And parents have always been deeply involved in the conversations about autism. Many times, non-Autistic parents have been the primary and only voice speaking about autism while Autistic adults have been excluded from the conversation. Many times when Autistic adults ask or demand to be included meaningfully in conversations about issues that affect us, we are told that we don't or can't represent or understand the breadth and diversity of needs and abilities of the whole Autistic population.

The truth is that all of our voices are valuable, important, and necessary, particularly when we disagree among ourselves and between each other.

The truth is that we do not merely deserve to be validated, but that we must be.

The truth is that we, Autistic adults, youth, and children, need you. We need you to support us. We need you to love us. We need you to listen to us, and to believe that whatever we have to say, write, sign, draw, or communicate in any other way is of vital importance whether or not you agree with it.

Without your help and love, we might not make it in the world as adults. Many non-Autistic parents worry about what will happen when their Autistic children will age first into adolescence and then into adulthood. They worry about whether their children will ever be able to live independently, and if not, what options their children will have to live as independently as possible. They worry about whether their children will ever be able to get and keep a job, and possibly support themselves.

And the truth is that the best outcomes can occur only when all involved work to give us as much independence and self-advocacy skills as possible. The more we can learn to express ourselves and communicate with the people around us, the better we will be able to advocate for our own needs and desires. The more we can learn to cope with anxiety and sensory problems, the better we will be able to navigate a world that was not built with the needs of Autistics in mind. And you, parents, are placed in a unique position to be able to encourage the lifelong development of self-support and self-advocacy skills.

Sadly, many parents of Autistic children do not receive support from their families, friends, neighbors, or communities. You may feel isolated, alone, and overwhelmed. Most of you did not expect to have an Autistic child, and most of you don't enter the world of autism understanding all of its subtle nuances -- how to negotiate an IEP, how to navigate the confusing array of "therapies" and "interventions," how to plan for the future, how to appropriately measure and evaluate your child's development. Being thrown into a new and unexpected situation can be confusing and stressful. It can be worse when family members refuse to acknowledge your child's special needs or worse yet, blame your parenting for producing a "defiant" or "stubborn" child. Many of you probably cry when you think no one can see you.

But there are some things we want to tell you.

Don't give up. No matter how overwhelmed you might feel at times, we need to know that you are determined to do everything you can to ensure that we have a place in the world as we grow into it. We need to know that of all people, our parents have not given up on trying to make the world a better place for us to be.

Seek support. National organizations like the Autism Society, the Autistic Self Advocacy Network, the Autism National Committee, and the Autism Women's Network have chapters and members across America and sometimes abroad (and frequently have partner organizations and connections to people in other countries.) You will not like or agree with everyone you meet in person or online, but you have to surround yourself with a support net of people -- whether other parents, Autistic adults, or professionals -- who can appreciate the struggles that you and your child face.

But seek support especially from Autistic adults. Even if you disagree with the ideas or beliefs of some Autistic adults, we are people who have been in the same places as your child. We share many experiences, including the ways in which we experience and perceive the world around us. Some of us were head-bangers. Some of us cannot speak. Some of us cannot live independently. Some of us went to segregated classes or schools. Some of us went to mainstream schools. Some of us also have mental health conditions, and some of us have also been tested as gifted. Most of us stim. Some of us can "pass" for "normal," but many of us can't. We are not identical to each other or to your child, but we can identify with your child. We have been Autistic our entire lives, and we have survived the transition from childhood to adulthood. We can offer insight into the ways your child behaves, acts, and processes information from firsthand experience. And we can tell you what has worked and what hasn't when we had to transition into adulthood.

We, Autistic adults, are the continual reminder that what you do as you raise your children will have a lasting impact on the next generation of Autistics. What our parents did for us -- both the good and the bad -- has permanently and undeniably contributed to who we are today. Be the positive force of encouragement and support for your child.

We needed to know that our parents loved us exactly as we are. We needed to know that instead of being obsessed with fixing or managing us, our parents wanted to blaze a trail for us to live and thrive as Autistic people. We needed our parents to understand that it is okay to be Autistic, even though that means we are also disabled. We needed our parents to guide us into your world -- the world of people who aren't Autistic and who don't understand what it is like to live Autistic. We needed our parents to be there not only when times were good and we were coping well, but also when times were bad and we needed more support than usual.

Your child does too.

Your child needs you to know these things, to do these things, to understand these things.

Your child needs to know that Autistic doesn't mean less or worse or defective or broken. Your child needs to know that you value being Autistic. Your child cannot become a healthy and happy adult unless you show with both words and actions that your child is loved exactly as is, and that your child will be supported and guided to as much independence as is possible.

It is not easy to be Autistic in your world. Your world was not made or meant for people like us. This is why we need you. Without that love and support, we might not make it in the world, and if we do, it will be harder than if we had that love and support.

We live in a society where ableism, the idea that people are superior or inferior on the basis of ability or lack thereof, has been thoroughly institutionalized in our attitudes, systems, service provision, and language.

This Tuesday, the sixth of March, the mother of a twenty-two year old Autistic son shot her son and then herself. She said that she was tired, lonely, and unable to care for her son anymore. The article reporting the murder-suicide quoted neighbors and other people who knew the family describing the mother as a wonderful person who loved her son, was under a big strain and depressed, and who had no respite. While I'm not inclined to spend my words vilifying Elizabeth Hodgins, this is not the first time a parent has murdered an Autistic child and was all but absolved for the crime in the media simply because raising a child with special needs can be overwhelming and stressful.

When parents murder children who are not disabled, the public is typically enraged and demands justice. When this happens to children with developmental or intellectual disabilities, it is far more typical to read comments and quotes expressing support for the parent who killed rather than condemnation of the societal conditions and attitudes that drove the parent to such desperation to commit murder of a human being.

When we Autistic adults read this type of article -- and this is only the most recent in a long train of killings of Autistic children -- it terrifies us. When articles reporting on these crimes spend the majority of their words not merely expressing sympathy for the perpetrator but calling for readers to understand that the difficulty of the situation somehow justifies the murder of a disabled person, they also inadvertently send the very powerful message that the lives of people with disabilities are not equal in value or worth to the lives of people without them.

Don't let your children grow up in a world where society devalues their lives.

It is parents, albeit a very small minority of parents, who visit these atrocities against their children, against children who needed their love and support. Thus, it you, parents, who bear the great responsibility to make your voices heard throughout your communities and networks that you love your children as they are, that you want the best for your children even if it means making enormous sacrifices, that you want to be part of the collective community in uplifting and empowering the next generation of Autistic children so that one day no parent will feel compelled or driven to murder and that no Autistic child will grow up thinking of him or herself as defective or broken or a burden.

We need you, because we can't do this alone. Your children need you, because they deserve to grow up in a world where things are better for them than they have been for us. Your children need you to dispel ableism from their world, little by little, so that one day there will be a future where ableism is no longer institutionalized into our society and systems.

Be here.







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12 Oct. 2012: I am adding the following text (trigger-warned and in white color to prevent inadvertent triggering) to this page in case people who are contemplating suicide, murder, or both go to Google:

I can't deal with autism anymore
I can't live with autism anymore
considering suicide
thinking about killing my kid
thinking about killing my child
can't put up with special needs anymore
can't tolerate autistic child anymore
legal to kill autistic child
sentence killing child with autism
what happens if i die before my child with autism
child with autism won't survive if i die
frustrating putting up with autism
special needs end of my rope
want to give up kid with autism
nowhere to turn autistic child
no support autistic child
I have no support from my family child with autism
want to kill my child autism
end suffering autistic child
mercy killing child with autism
can't go on parent child with autism