A great article from Atlanta advocate Ira Eidle about how programs meant to help disabled students often backfire and completely miss the point.
Learned helplessness happens when you keep trying to do something and failing unless you are aided by someone in a position of authority or dominant group you don’t belong to. But you can’t really succeed because you are not getting the type of support you need to be independent. Often this person or organization is a member of an established institution, and the methods of aid are designed, purposely or not, to stop you from having long term success on your own. When the person with less power or authority tries to become more independent (like through enacting systemic changes, better assistance or devices), the authority (for fear of losing control) either clamps down on the subordinate or withdraws approval and aid. You are scolded, abandoned, or excluded.
So we just stop trying to do things on our own terms and depend on NTs to direct us and be in charge of organizations and events supposedly built for us.
It’s important to understand how educators, medicalists, and parents instill learned helplessness into young Autists. We are taught that we are so outside of what is acceptable that we must be changed. We must submit. We have to comply. We are taught NTs are always right. It is still very hard for me to stay in the frame of mind that other people are required to at least meet me halfway in communication and effort. We are not the problem; people not knowing how to interact with us is the problem. Neurophobia is the problem. Requiring conformity is the problem. Communication and cooperation are a two-way street or progress doesn’t happen in the long term.
The learned helplessness of many Autists becomes clearly visible when an allistic person or group who has placed themselves “in charge” of Autistic spaces, activities, or organizations abuses, belittles, or ignores the majority of Autistic people within that space. Most of the time we are simply tokenized within these organizations and given the impression that our group concerns are being considered when there is no such intent by the NTs at the helm. We are trotted out as successful or “inspiring” examples rather than experts. When an observant, fed-up, or abused Autist brings up this behavior, the Autistic people in the org can split into two camps: those who are outraged and have likely been upset by similar treatment, and those who will instinctively side with the non-Autistic authority figure. (Some sit the fence, of course, which isn’t actually a moderate position)
In the Autism Industrial-Complex ($6 billion per year profit in America) there are two kinds of Autistic people according to the allistics who created it: the “good” ones and the “bad” ones. The “good” ones will go along with medicalism/behaviorism, not set down boundaries, not demand payment for work and “volunteering” their personal stories and projects, and never question the way our lives and abilities are framed to the general public. Even when some disagree, they stay quiet once they realize the college or organization will stop asking them to contribute.
The “bad” ones question authority, set down boundaries about what we are willing to contribute for free (which is the industry norm), do our own research and examine our own experiences, collaborate with one another to speak out against abusive and coercive therapies, and generally demand equity, direct aid, and Autistic control of funding and research for autism. The “bad” ones confront NT industry professionals who profit directly from spreading incorrect information that harms us. The “bad” ones speak out about exploitation. Although most Actually Autistic people fall in between these extremes somewhere, the allistics are very much putting us into one category or another based on whether we are a liability to their business or not.
Here are some examples of what internalized ableism and learned helplessness makes Autistic advocates say in these conversations. Then there’s an explanation of why this isn’t true or doesn’t matter even if true.
“If we pull out of this [bad-faith] organization, we will lose what resources we do have.”
Yes, in the short term we will lose some resources and lousy “allies.” They will be mad at us and many of us can’t handle that kind of conflict or rejection. However, I have not yet seen any major NT-run organization that has provided extensive resources to us. We still have to do everything ourselves. The most I have ever received is the use of a room for my support group and some bad office supplies I have to drive across town to use. Sometimes they hire us on as token representatives, but these positions by their very nature end up chewing up the person in them and compromising their integrity. There’s a ton of turnover in these orgs as far as the Autistic members go.
“How dare you stab [the abusing NT authority] in the back!!!” (By saying something)
It’s never good to “shoot the messenger” when your stated goal is to help people like yourself, but this happens a lot. We are not strictly a medical minority, we are an institutionally oppressed one, meaning we are socially and culturally vulnerable to bad people within these orgs. Especially after the #MeToo Movement, it’s the best policy to believe people with less power when they report mistreatment. Statistics show that the vast majority of these complaints are well-founded and need to be addressed. In addition, we are a population of people not prone to lying or manipulation of this type and non-Autistic people who profit from our involvement without paying or centering us are fundamentally exploiting us to begin with no matter how superficially nice and supportive they may seem.
“So you think that by starting our own thing you can do better, help more of us?!” (sarcastically)
Again, if we are not being heard in the first place and the services we actually need are not being put into place, or we are not getting money and people to create these needed services for ourselves, there’s little loss in moving on and trying to help Autistic people on our own ideological terms. Stop trying to make a place at someone else’s table when they fundamentally don’t respect you; build your own. It’s more work, but at least you will have a good seat from which you can build something that’s real and actually helps our quality of life and care. As activist Morenike Giwa Onaiwu says, “It’s OUR table anyway.”
“But we can’t accomplish this on our own!“
We have already accomplished so much on our own. We have educated so many parents of Autistic children that they are pulling their kids out of anti-autistic therapies, putting them into respectful programs that are child-led, and learning to relate to their children in ways their doctor told them they would never be able to do. We are getting the word out about us so much that we have shows about our lives on major platforms (no matter how imperfect) and we are beginning to be mentioned in political discourse and sought out by companies for our skills. WE did that. WE came up with the Neurodiversity Paradigm and Movement. It seems daunting because our stories get lost in the media and we are in the early stages of our own civil rights efforts, but the ball is rolling and we are past the “awareness” stage already. [Additional note: Not every Autistic person talking about Autism on social media is part of the Movement in that they believe in its tenets or promote those ideals. Not every Autistic advocate is well-informed on it.]
“I think we can change this org from the inside. They’ll come around to our way of seeing things eventually.”
No. This doesn’t ever work in real life. I wish people were more open to admitting their mistakes and truly listening to us, but that’s not the world we live in. Ask Black people if having Black cops on the force has stopped police shootings or fundamentally changed policing. It hasn’t and it never will. If you threaten an organization more powerful than you by pointing out what they are doing that’s ethically wrong or not effective, they go into defense mode. If these autism orgs ever admitted that the therapies they provide or promote cause PTSD and groom kids for future abuse, they would be open to massive malpractice suits. Their reputations would be destroyed, the medical establishment would abandon them, their profits would dry up. Parents and adult Autistics would be able to sue for millions in damages. They already see us as inferior, I’m afraid to say. We are simply tokenized and when we are listened to, nothing actually ever changes. They aren’t going to upend a profitable business model.
Once you are a part of an organization, they hold all the cards. If they don’t like something you say, they have a million ways of silencing you, kicking you off the board or committee, or discrediting you. And they will in order to protect their interests, money, cure research, and reputations.
“But we’ll get in trouble. We might be sued.“
Not if what you say is true, you retain any evidence, and you don’t complain on social media, to those outside the organization, or outside of internal communications. If you keep it “in house” they have no grounds for suing you for libel or slander. In fact, if they harm you they are in danger of legal action, but might try to scare you and convince you that you have done something wrong when you haven’t.
So don’t believe them if you have been mistreated or ignored about serious issues. Conflict makes us feel like we did something wrong even when we didn’t sometimes. But if you have been hurt (emotionally, physically, or sexually) or if the org is being nasty and dismissive to the people they are given money to help, they are the ones who need to be scared. Besides, more and more Autistic people are becoming the type of lawyers who specialize in disability justice. We have legal standing just like any other American. This is why we need to back one another up.
“We don’t have the skill sets to accomplish our goals without them.“
I have to admit it is harder for us to accomplish our goals due to the nature of autism. We are often introverts who have difficulty organizing, finding enough money, and showing up to important meetings and protests. We run out of spoons fast. The supports we really need to thrive and have agency in our lives are simply not there yet. That’s why we certainly need NT allies and aid.
However, we need to realize that these organizations are not our NT allies the moment they decide to ignore our concerns. They may act like they appreciate us, they may try to sway our low sense of self-worth by including us when we have never been included, they will flatter us, boost our creative work (which gives them free advertising BTW), and put us in leadership positions with little actual power. They will even proclaim they support our views, but the proof is in the pudding. Has anything actually changed? Have they given you resources and volunteers to implement the programs you need? Have they been respectful at all times? Are they talking bad about other Autistic people? Are they encouraging infighting? Are they still profiting from therapies we know are harmful to us? Are you still doing work for them for free?
Yes, we need allies, but the industry needs us more. Those of us operating from internalized ableism often feel that the only legitimacy and relevance we have is awarded to us by NT-led organizations asking us to contribute (again, usually for little to no pay). Their approval makes us fell seen and important.
But the opposite is true: they need us to be involved to be authoritative. That’s why they keep inviting us to contribute.
Imagine a conference about racism in America, but most, if not all, of the presenters and speakers and experts are white people. Imagine a symposium about trans people with only one or two trans speakers and experts. Ridiculous and offensive, right? But how many of us have been invited to speak or be on a panel at a conference organized and attended entirely by non-Autistic people who have simply observed us and studied old, outdated information about us compiled by other NTs? How many of us have been asked to speak for all Autistic people even though we are vastly different from each other and Non-speaking and intersectional Autistics are left out? How many of us are allowed to be critical of NT professionals and perspectives when we communicate about our issues at these events?
As long as we are “good” Autistics who aren’t critical, don’t have strong opinions, and don’t make them feel uncomfortable about not centering us and our consensus opinions on Neurodiversity Theory, we are allowed at the big table. And many of us will still side with the NTs because they do not really want to be associated with “rogue” advocates or Autistic people at all. Many of us will work for free and compromise our stance just to feel important and appreciated and included. But as long as that keeps happening, nothing is going to really change and we will continue to die very young. The services we need will never be constructed.
So be a bad Autistic.
Personal income potential for the autistic population. If you are autistic ( have autism?) and are an older adult like me, how many jobs have you …Economic Realities of Autism
From a late-diagnosed friend who gets it. We need to listen to our Autistic elders.
CW: gender dysphoria, genitalia, body functions, sex talk, self-harm
Over a year ago I wrote a post about how I was learning about gender and being Autistic. I stated (pretty confidently) that I was bigender AFAB and totally into men. After the same kind of reflection I had to give my past after being diagnosed Autistic, I redigested my history through the lens of being gender divergent. I had to face some hard stuff about major mental health episodes that were not fully explained by autism, but several wonderful Trans friends have been so helpful. Thank you Zee, Maxfield, Alaina, Jordan, Eli, and Katie. You’ve taught me so much and been so supportive and patient. Trans people understand me in ways cis people have never been able to do.
I also said in my previous post that I do not experience dysphoria, that “my gender diversity is entirely social and expressive in nature.” This turns out to not be true. From what I have observed in others, not every Trans person pops out of the womb knowing their discomfort and mental health problems stem directly from gender dysphoria. To complicate matters, a person can also be Neurodivergent, mentally ill, and/or experience childhood trauma. It can be impossible to unbraid which dysfunction is caused by what. You can mask multiple identities that are socially unacceptable in order to earn love, avoid abuse, and fit in enough to survive. These threads of suppressed selfhood become indistinguishable from one another.
I did a lot of research in articles and on Trans media and discovered that people who figure out they are gender divergent as adults can have covert “symptoms” of dysphoria or signs that are misinterpreted, excused, or denied through mental gymnastics and lack of cultural imagination. For instance, as a child I was completely unaware that people could feel different about being a girl or a boy.
I would like to list my own covert and overt signs of AFAB gender dysphoria from my youngest years to now. [Note: A lot of the more covert symptoms are also associated with Autism, trauma, or mental illness, but in conjunction with the more overt signs, this suggests a mixture of autism and gender divergent traits which is not uncommon]:
- Being upset about having to sit to pee. Asking my mother why I couldn’t have a penis (this is a distinct early memory) and not getting a satisfactory answer. Trying to pee standing up and making a mess. Dreaming about standing to pee.
- Being dressed in more feminine clothing than I ever wanted to wear and resenting it. Wanting to wear boys’ underwear and clothes instead of girls’ from a very early age. (This was immediately discouraged and I started playing dress-up like a girl)
- Not ever understanding how to interact with other little girls and them clocking me as different right away. A lot of that is, of course, due to autism as well which is one reason this has been so difficult to figure out. I’ll never know exactly what made them reject me, but gender non-conformity was definitely a factor.
- Having profound childhood depression and feeling like I’m not actually “real.”
- Having “male” special interests.
- My anxiety, depression, and dysfunction increasing very dramatically with the onset of puberty. I can’t even describe how severe it was or how it felt. This is a common symptom of gender dysphoria. When I got my first period I immediately threw up. I am not particularly squeamish, but I had a great deal of trouble with this body function. Again, Autistic sensitivities can make body functions uncomfortable, but my Premenstrual Dysphoric Disorder (PMDD) was always very acute and accompanied by unbearable anxiety and pain without having any actual gynecological condition like endometriosis or cysts. It also didn’t stop once my period started, but only got worse during.
- Relief of general depression and anxiety when I was put on hormones that stopped my periods. Trans people are often intolerant of the sex characteristics they have and find relief with hormonal changes or when certain body processes are halted or begun.
- Feeling like an imposter when wearing feminine clothing and feeling like I was wearing a costume. Feeling like a spy or interloper when hanging out with girls (when they would let me).
- Having a much easier time socializing with boys and trying to prove how “tough” I am to them.
- Having “deserted island” fantasies where I daydream about how I could present or dress without any observers to criticize/threaten me.
- Recurring dreams where I have male genitals and feeling grief upon waking.
- Dismissing my anger at being female by thinking it’s “only internalized misogyny.”
- Episodes of self-harm associated with meltdowns, but because I felt “angry at my body.”
- Being embarrassed about having large breasts to the point that I wear baggy clothing, tight bras, and slump to hide them which affects my posture.
- Feeling distress when I see any pictures of myself and being unable to look directly at the camera (also an Autistic thing, I know). However, my photos always seemed very grotesque to my eye and I never think I look like me.
- Having a bad reaction to hearing my voice played back to me because it sounds high and girly in recordings compared to when I speak. This is “voice dysphoria” and all Trans people deal with it to some degree.
- Showering in the dark.
- Watching Queer and Trans porn exclusively. (It’s incredibly sad that often the only way to learn about FTM changes or Trans sexuality is by watching porn. There is also not enough positive or educational porn/sex ed featuring gender divergent people, although this is starting to change)
- Preferring to be intimate with bisexual men, closeted Trans women, and kinksters who would engage in role reversal in sex play.
- Buying men’s toiletries, clothing, and cologne but dismissing it “because it’s cheaper.”
- Not feeling comfortable with female roles or occupations. I was much more comfortable working with men in restaurant kitchens (despite the sexual harassment) than doing front-of-the-house work which was mostly women servers/hostesses.
- Not wanting to have children because I can’t imagine my body doing that. (There are lots of other reasons too)
- People assuming I’m a lesbian and being very confused about me.
There’s a lot of other things, many of which are difficult to divorce from my neurodivergent traits and probably shouldn’t be separated out. For instance, I am actually pansexual and I am attracted to women, but due to general social difficulties I never learned how to “flirt in gay” – or flirt like a normal human at all. The only examples I could study were of cis-normative romance. I didn’t know one can have different types of sexual feelings for different genders.
I also want to point out that a person can go a very long time without connecting these things about themselves to Trans identity, especially if they are required to mask heavily in order to have any kind of life. I didn’t even associate the blatant traits listed above with “I am not gender normal.” I was put on lots of psychiatric drugs that muddled my thinking and due to multiple serious problems, including other types of dysphoria, abused alcohol for a long time. This can be a major barrier to understanding oneself, but isn’t uncommon in closeted people.
To further complicate matters, I am not a binary Trans man – I exist on a non-binary gender spectrum but “center of masculine” as Hannah Gadsby has noted. I love flower patterns, fabric crafts, toe-nail polish, playing with make-up, grumping about men with cis women, and occasionally “dressing up” as femme. I feel much better shaving my legs even though I’d also like to grow my beard. My preference for men/AMABs was also confusing for me. I was familiar with butch lesbians, but I do not identify as such at all and don’t fit into that culture either.
I honestly feel like I am a non-binary bi/pan guy who values their feminine qualities and experience and I will never not be a feminist.
I have gone through many “masc phases” when I couldn’t take the dysphoria anymore and long periods of time when I was trying so hard to be properly feminine that being clocked as queer or masculine caused me distress because I wasn’t performing well enough. I have experienced discrimination and violence due to being visibly gender non-conforming and this has also set me back. Being in my 40s, when I was growing up, the vocabulary and information about gender diversity was not there when I needed it although I always acknowledged that neither boy nor girl was a good fit.
I wish there was a clear path to resources and support for every gender-questioning person no matter where they live, but that is a long way off. Luckily, things are changing for gender divergent people and there is information and community online, but actual support services are mostly missing or discriminatory, especially if you are diagnosed Neurodivergent or a member of other minorities.
Three years ago I was finally clinically recognized as being Autistic. I say finally because I was almost 40 years old and had suspected I was on the spectrum for over 20 years. My entire adult life I had “failed out” of society for reasons I could not then explain. I jumped around from one low-paying job and abusive workplace to another and I could tolerate none for long. I had no references, wealth, and a very crummy, abusive safety net. (Most of which is still true).
I decided that my secondary teacher education and English degree would be sufficient along with my intensive study and life experience in making me an excellent autism educator and writer. What I didn’t expect is that although people like me are increasingly in demand at conferences, symposiums, and colleges, the market price for our expertise is exactly zero dollars.
We are never (I’ve checked on it) offered money unless we have gained national attention and that attention usually comes at the behest of those trying to use us as inspiration porn. No Autistic person gets paid unless they are privileged enough to have neurotypical agents or advocates who support them by negotiating for us or giving us funding for mass-market publication and promotion. Unfortunately, this has led to mostly white, verbal, straight, cis, NT-passing, “no-ID,” and/or well-supported Autistics gaining visibility while more intersectional voices are completely buried. We hardly ever see BIPOC Autists, Non-speaking Autists, multiply-disabled Autists, Autists with criminal records, homeless/impoverished Autists, or Autistic people with many intersections and difficult identities.
And those are the voices which are the most compelling and insightful about exactly what needs to change to help all Autistic people.
This exploitative norm is reinforced with bad-faith arguments like, “But the other guests are doing it for free.” Most other presenters at autism conferences and institutions of higher learning are professionals who use these events to promote themselves, their practices, and their publications/paying work. They are getting advertising out of it at least, although they are still more likely to be offered compensation in money. Autistic advocates often have no other gainful work and public speaking is especially stressful for us. We spend more time in preparation and face a greater risk of not being taken seriously by parents, students, and mental health professionals who attend. We are asked difficult and often triggering questions that we are nonetheless more qualified to answer than non-Autistic “autism experts.”
Another argument is, “But there’s not enough money for us to do that.” Lemme tell you a true story: For several years, venerated and well-endowed Emory University in Atlanta has had a class on autism. Most of the semester, students learn about autism from very outdated and debunked material put out by neurotypical sources and taught by a neurotypical professor. For two of those years that I know of, local Autistic advocates (who are acquaintances of mine) have been asked to come spend a morning educating the class about autism from an Autistic perspective. Neither were offered any compensation even though one advocate was unemployed and going through a terrible divorce and could barely afford housing. (He passed away soon after he educated students there for free).
I wrote both friends about requesting at least a small honorarium for their life experience, trouble, time, and expertise. One was too afraid of losing the gig to ask, and the other was so blown away by even being included that he didn’t feel right asking for his time and work to be respected. I’m pretty sure Emory could scare up fifty or more dollars to make it worth their efforts.
There is no subsidized/endowed organization that can’t spare some scratch for us if they actually care about minority voices.
Here’s what happens when we do ask for money: We are simply passed over, many times in favor of less intersectional Autists with better supports and less of a sense of what they are worth. I’ve been seated on autism conference planning committees where proposals by Autistic presenters who request any amount of money are thrown on the “No FUCKING Way” pile automatically. It was terribly dehumanizing to witness and it showed me what neurotypical professionals really think of us.
“But is this really something as bad as exploitation?” you might ask. Imagine if you will a convention about the Trans Experience in America. You are a Trans activist/advocate/scholar who wants to share what they know. You get to the conference and discover every attendee and speaker is cis and are considered bigger experts because they have studied the Trans Experience in books which had no input from Trans people at all. You discover that the cis “expert” speakers are getting some sort of compensation, even if it’s just advertising, but no members of the population being discussed are compensated in any way and neither are you even though your minority status makes employment much more difficult. You yourself have no other source of income.
Is THAT exploitation? I don’t think any LGBTQ allies out there would disagree that it is. In fact, I think they’d be furious and call out that organization in the strongest ways possible.
However, I have experienced this exact scenario multiple times in the context of Autism and the neurotypical organizers act offended if it’s brought to their attention. There is “abled fragility” in abundance. I have realized too late that I was set up to look like a self-narrating zoo exhibit for no pay even though I was ill with anxiety and I spent many hours preparing the material.
This a common problem in nearly all advocacy, but especially disability advocacy. It is assumed that if we are alive and appear to function that we have adequate employment and support when mostly we do not. It is assumed that somehow the mere exposure will lead to better things for us. This is rarely, if ever, true because exposure doesn’t matter if absolutely everyone thinks they can get away with not paying people like yourself.
And everyone does get away with it. Here is why:
- Autistic people are conditioned to feel they are unworthy, inadequate, and burdensome. This makes any kind of superficial recognition or respect seem weightier to us than it actually is. We are expected to be grateful for even being asked what our lives are like. In other words, we are expected to do unpaid work for being treated with the same kind of consideration that regular people automatically receive for their specialized knowledge.
- We are considered to be “less expert” on our lived experiences and personal education than those who have not lived it. There is an assumption that we are unreliable witnesses to our own lives because we are mentally/socially inferior.
- We have less ability to effectively negotiate and assert ourselves and our needs because we were never taught how to and have a different set of social aptitudes (like hyper-empathy). We were either too sheltered or too neglected to be taught these important self-advoacy and promotion skills.
- Organizations use our positive Autistic traits against us; namely, our extreme passion to “get our message out” and make things better for others like ourselves regardless of our own sacrifices and our discomfort for discussing crass subjects like money. We are selfless and it is weaponized against us.
- Other people don’t see an issue because we are considered to be medically sick people rather than a culturally oppressed minority (which was also the problem for Trans/Queer people at one time).
- For those of us with more externalized Autistic traits (dyspraxia, Non-speaking, low-masking) being taken seriously is far more difficult, including within the advocacy community itself.
At the end of the day, we are considered easy to dupe because we are “inferior” or even subhuman but there are big benefits to organizations for “including” us despite doing so in deeply offensive, tokenizing ways. Many shifts in how we view the labor of oppressed minorities, and especially developmentally disabled people, are going to need to occur before we are valued enough to get paid according to what we deserve to earn. Unfortunately the best way to accomplish this shift is by giving Autistic advocates, particularly intersectional ones, much more platform and letting us communicate at as many events as possible. But the best way to get a good advocate to stop their advocacy is to continually deny any payment – we cannot sustain the work without it.
So, baby steps to humanhood and financial stability I suppose?
Ten years ago at exactly now, I was packing my car for the long drive to Portland, Oregon trying to find a place where my personality was less alienating for me. When I got there, my hosts were terrible, everyone judged me for the same reasons plus my Southern accent, and I was unable to find all the “weird” that Portland claims to keep. I discovered I was too weird for Portland as well and I shouldn’t have watched Dig! so many times.
I came back to the South nine months later in an epic cross-country solo road trip on nearly no sleep while very mentally ill, my terrified cat in the back seat. I moved into my parents’ house again and soon began a tepid relationship with a classical guitarist for a year. We were both on the spectrum, neither of us knew it, and we “coped” with our general dysphoria by drinking a lot.
We broke up and I proceeded to flail around for mental stability. I was 33-34 years old and had failed at every attempt to “adult” my way to respectability despite my intelligence and talent. I was experiencing extreme pain in one of my fingertips and no one believed me about it for the next three years, but I was unable to work for long, fix food for myself, or function at all. Eventually I had three excruciating surgeries to remove a very rare, very debilitating series of tumors with the help of a charity organization. During the chronic pain, I drank even more and acquired a third DUI one summer night.
That night when I was 35 years old changed my life – for the worse in the short run and eventually for the best in spite of what was done to me. I was tied down and tasered by the cops during a mental health crisis and had the next three years of my life utterly destroyed. I became a shut-in while dealing with the tumors and unable to drive.
It’s hard now for me to comprehend how beaten down and subhuman I felt mid-decade.
During all this, I went to community college to get a secretary degree and failed to complete my studies. I received no accommodations although I tried as hard as possible to get help without any concrete diagnosis or disability. I was sexually assaulted a few times during this period. I was trying as hard as possible to make my parents love me and get society to tolerate me by wearing multiple masks which resulted in dissociative identity problems on top of the PTSD.
I was very close to taking my life for real (rather than just fantasizing about it like I had since turning eight years old) when I decided to go off of the ever-changing psychiatric cocktail I had been fed since I was fourteen. It was not easy. It was like tripping for about three months, and not in a pleasant way, while the drugs worked themselves out of my system and I readjusted. I stayed off the booze for the most part.
It finally dawned on me in my new mental clarity that I was not a broken freak or a loser, but rather a remarkable type of person and this culture, this country, is built to quietly dismantle people like me. I didn’t fail out of society; every layer of society had failed to protect me.
And then 2016 happened. And then #MeToo.
And then I was clinically identified as autistic.
The past long three years, for reasons personal and political (because there is no difference), I have made the decision to live openly by not hiding my identity as a neurodivergent person with a lot of unpopular opinions to share. There has been backlash for this in my life from family and the autism industrial complex.
But it was all worth it – even these past three years of constant existential panic and alarm as the world burns and heaves with discontent. There’s nothing like finally having the language and framework for understanding where you fit into the universe, if not humanity. Once I knew I was a non-binary autistic person my purpose snapped into focus and my genuine identity began to solidify.
I began to value myself, take up space, accomplish things, and heal the profound gaslighting of the first 40 years of my life.
Trans pastor and speaker Paula Williams says, “The call to authenticity has all the subtlety of a smoke alarm.” I think the major conflict in the world right now is the battle between authenticity, objectivity, and facts and the forces of greed, illusion, and mass manipulation. There is power (and risk) in authentic perspective, in truth telling, in abandoning language that frames people and events in false terms.
I feel a great awakening of people who refuse to be silenced and destroyed by tired and dangerous social controls and this is most apparent in the new visibility of gender queer and/or neurodiverse people.
2020 will be a year of great upheaval as well as shocking enlightenment.
I am many kinds of weird, but the first label I remember is “bookworm.” My parents discovered I was a really easy kid to mind after I could sit up on my own; just put a big book or catalog in the floor and I would sit for hours turning the pages and staring at them.
I learned speech by intense observation and repeating whole adult-sounding paragraphs cribbed from newscasters and TV commercials. I was initially behind my peers in reading, but went through a mental expansion between first and second grades that suddenly landed me in “gifted and talented” special education. They tested my verbal IQ in second grade. After three questions, the lady switched to the adult version of the test which I also blew away. I went from barely grade level at the beginning of first grade to college level reading by fourth grade. Meanwhile, my physical and social development were stunted and I didn’t feel human.
This is a typical tale of a certain type of atypical child – the hyperlexic who becomes academically gifted but socially isolated. Hyperlexia is “a syndrome characterized by a child’s precocious ability to read. It was initially identified by Norman E. Silberberg and Margaret C. Silberberg (1967), who defined it as the precocious ability to read words without prior training in learning to read, typically before the age of 5. They indicated that children with hyperlexia have a significantly higher word-decoding ability than their reading comprehension levels. Children with hyperlexia also present with an intense fascination for written material at a very early age.” – Wikipedia
Most of the sparse material I found on hyperlexia is dedicated to imposing a system of subtypes with the sole purpose of divorcing it from autism. As the hilariously-named Darold Treffert, MD, puts forth in a lengthy article with no scientific merit, there are three subtypes:
Type I: Regular-ass smart kids who begin reading early but whose peers eventually catch up. “This form of “hyperlexia” is not a disorder; it does not require treatment. These children, usually very bright, go on to have very typical, successful lives.”
Type II: Hyperlexics who exhibit “a savant-like ‘splinter skill’ associated with the autism.” These are the ones who are in trouble, folks. But, first can I say that there’s no reason to call something autistic kids tend to excel in a splinter skill. It’s just a skill that need not be splintered away from the diseased tree that is the pathological autistic child according to Darold. He concedes, “However, the precocious reading ability can itself be a valuable treatment tool for teaching language and social skills and should not be marginalized or disregarded as unimportant or frivolous.” Then Darold shows his true colors by saying, “Unfortunately, as I will point out, some clinicians and other specialists hold that when precocious reading ability is present, and when coupled with comprehension, language and social difficulties, it is always part of an autistic spectrum disorder. I do not subscribe to that view.”
Type III: Early, obsessive readers who show lots of autistic traits, but then eventually “outgrow” the autistic traits which “fade over time.” The Type III description is too amazing to not include in full:
The hyperlexia is coupled with an intense fascination with letters or numbers. Yet in spite of the intense preoccupation and ability with words, there are, correspondingly, significant problems in understanding verbal language. Comprehension of that which is masterfully read is often poor, and thinking is concrete and literal. There is difficulty with, and paucity of, abstract thinking. There may be some behaviors and symptoms commonly associated with autism spectrum disorders as well including echolalia (repeating rather than initiating conversation), pronoun reversals, intense need to keep routines (obsession with sameness), auditory or other sensory hypersensitivity, specific intense fears, strong auditory & visual memory, and selective listening with the appearance of suspected deafness. In this group of children these latter “autistic” traits and behaviors are only “autistic-like” however, mirroring those seen in autistic disorder itself.
But totally not autistic because “in contrast to those in Autistic Disorder, these ‘autistic-like’ symptoms fade over time as the child ‘outgrows’ his or her ‘autism’ as some parents have described that transition. I call this group Hyperlexia III.” Darold the Great wraps up his theory by telling us exactly why it’s necessary:
The purpose of this posting is to describe these different types of hyperlexia and to point out the necessity for careful differential diagnosis among them because of differing treatment and outcome implications, along with alleviating some of the unnecessary distress and worry in parents when a diagnosis of Autistic Disorder is applied prematurely and in error to some children who read early.
And this is from 2011. But drivel like this is still used to perpetuate fear of having a child with a different neurotype. Here’s an example of a Warrior Mom, PhD, nearly begging for a different diagnosis to be created for her hyperlexic child who is actually autistic.
It’s pretty clear that Type III Hyperlexics are also neurodiverse, but this points out how flawed the analysis of clinical blowhards can be, blatant bias against autism aside. Many avid autistic readers are exactly the ones who used reading as a skill to blend in and overachieve so as to be included in society and win love. We learned how to interact with people by reading fiction and reading has been shown to teach better empathy. Apparent lack of cognitive empathy has long been a poor litmus test for autism and reading can help a kid figure out how regular people interact and what they expect.
I used reading and intelligence to learn to mask autistic traits, but the problems, like anxiety and social confusion, never got addressed.
I think it’s impossible for many people to understand that a medical condition can confer both difficulties AND advantages, that a person can see their autism as both disability AND privilege. It’s part of why the whole thing is so weird: Our cognitive profiles have high peaks and some low valleys which is why it is characterized by some as “spiky.” Hard things are easy; easy things are hard.
So can some kids just be really good at reading and not be autistic? Sure thing! But probably not if there is a genuine “intense fascination with written material from a young age.” And not just the words on the pages, but a deep affinity for books as objects of comfort and refuge. I’m that chick that reads at the bar. My house is infected with random stacks of the things. Just seeing them lined up calms me and I go on vacation to famous bookstores.
I know a young autistic boy who is minimally verbal but talking more every day because he is teaching himself to speak through reading. He loves books and flipping the pages as a stim. He already knows how to read and is only around 4. His favorite word is “books.”
I know an autistic man who takes a textbook full of algorithms to dinner with his wife.
I credit my verbal IQ and obsession with books with my psychological survival as an autistic person. (I credit my physical survival with being middle-class and white.) While autism made other aspects of my existence difficult, reading and learning made me surprisingly resilient and able to think my way out of despair. I would be lost to myself without the ability to read and put my frightening experiences into context, to learn about my phobias, and escape from the angst of being alive.
So just let kids read and don’t call it a damn disorder!
After I was diagnosed at 40 as autistic, I wondered what the next steps for saving my life would be. I asked my psych evaluator and allistic-led sources in my area what I should do, and the answer invariably was “keep self-advocating.” I looked into what “self-advocating” meant and here’s what I found:
“Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own lives, including being in charge of their own care in the medical system. The self-advocacy movement is (in basic terms) about people with disabilities speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others.” – poorly cited Wikipedia entry
“n. the practice of having mentally disabled people speak for themselves and control their own affairs, rather than having non-disabled people automatically assume responsibility for them” – Collins Dictionary online
Well that sounds delightful and empowering!!!
Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates”
But that’s not what the professionals telling me to “self-advocate” meant. It didn’t mean that I was to have more control over what drugs I was prescribed, how I was addressed by professionals, that I was to be led to appropriate resources and helped to access them, or that I would be able to “call upon the support of others.”
They used the term “self-advocacy” to mean the opposite of that. I would speak with a mental health provider and ask for help with accessing programs, starting programs that would help my community at large, support to fight the over-pathologization of my condition by local medical professionals who wouldn’t listen to me self-advocate, a therapist who was autism-informed (for adult women no less), or even training for how to self-advocate, and the answer was always, “We can’t help you with that. Those things don’t exist here. Keep self-advocating.”
It took me a few years to find the right people and programs.
I thought reaching out to professionals was, first of all, what they wanted us to do because we are not considered experts on our own inner experience. I also thought looking for ways to help yourself by accessing available resources was self-advocating.
They were in effect telling me to “bootstrap” my way out of systemic oppression with no help from the autism-industrial complex. Doctors DO NOT generally listen to the opinions and treatment plans, no matter how well-informed, of non-conforming, invisibly disabled women. This is clear by the number of posts in autism groups which relate how abysmally difficult this is because of bald-faced intersectional discrimination. I needed someone, anyone, to go to the doctor with me to a. be a witness to my ill-treatment, and b. back my ass up in there! As a cognitively disabled woman, I do not possess the necessary credibility. But I was being told, “Go up against this powerful man and impenetrable institution alone.”
Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need.
Autism centers in America DO NOT generally have many resources for autistic adults including classes for self-advocacy training. Even though autistics are giving one another tips and tricks online, we still run up against the wall of our own poverty and discrimination. The problem isn’t that we aren’t self-advocating or trying to; it’s that people refuse to give up the power they have over us. We have no leverage.
It’s interesting to note that other culturally marginalized groups are not asked to self-advocate, because they are seen as being oppressed rather than intrinsically broken. As the black community has pointed out, they simply don’t have enough resources to self-advocate under the level of repression they experience. Neither do we, no matter how good we are at being the squeaky wheel and insisting upon ourselves. No matter how much we research our condition and the medications we are given. No matter how self-aware we are.
Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness.
We need people outside our community to care enough to reach down and help lift us up, and share their superior coffers and connections and reputations, because we are often literally unable to speak for ourselves and not heard when we do. For instance, black people need direct action from white people to reach their civil rights goals, without whites taking over the narrative and stealing the funds.
Autistic people need exactly the same thing from allistic people. Stop putting all the onus for change back on the most powerless. Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need.
The truth is this: self-advocacy is primarily a term used to put down the efforts of #actuallyautistics advocating for all of us. Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates.” In fact, most of us can advocate for others better than we advocate for ourselves. This framing gives disability organizations permission to not properly compensate autistic activists for the unpaid labor we do to give our community a centralized voice and civil rights. Our huge hearts, passion, and sense of existential urgency is leveraged against us and we burn out with little to no support.
Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness. The saddest truth in all this is that the autism industry does not want us reaching our own internal consensus on the issues, joining together, and advocating for systemic change. It would really mess up their bottom line if we became self-determining, a true community. We would have a united front for ending ABA, gaining financial power, building cultural credibility, and eventually not needing them once we have autistic professionals, researchers, and representation in place.
Enjoy this fun video!
Since I began a support group for women and non-(gender)-binary individuals this year, I’ve learned more about gender as it relates to autism. A while back, I wrote a clumsy piece in which I was trying to figure out why people sometimes mis-gender me in conversation. I give several good reasons, which I’m not going to rehash here, that have to do with how I was raised and socialized as a kid with Asperger’s.
But after some deeper thinking, reading, and talking with non-binary folks, I recalled some things about my youth that suggest that I am another spectrum person who shows gender diversity. For instance, my favorite pair of underwear as a four-year-old were what I called “boy-panties.” Boy’s tighty-whiteys in my size. I always begged my mom to let me wear the one pair we somehow had, but she got uncomfortable at my insistence after a while. That was the first time I remember being made to feel wrong for wanting to dress a certain way.
There’s nothing wrong with how anyone expresses their gender, genders, or lack of gender – the problem is with society’s narrow definitions.
Like most little girls, I was given dolls like Barbie and fancier baby-dolls like the ones in horror movies. I never liked them. The china dolls were ghoulish with their staring glass eyes, and I would denude the Barbies, yank their limbs off, and ignore them.
Later on in life, I would have sexual relationships with men who enjoyed cross-dressing in public and role-reversal in the bedroom. I was very much on board with this and kept having to steal back my panties from them. (Expensive!!) I just saw this as light kink rather than true sexual expression, and I did both myself and my partners a disfavor by not leaning into the psychological aspects more.
Gender also exists on a spectrum.
Outside of sexual expression, I felt confused and angry about the strict gender expectations that made it harder for me to fit in anywhere. Dresses were scratchy, uncomfortable, and made me feel even more awkward. I’ve never felt comfortable with purses or feminine shoes – like I’m a silly imposter. Instead, I prefer gender neutral clothing. I still enjoy some makeup, skirts, and some types of female outer expression. But other trappings of femininity are not emotionally or physically comfortable for me at all: women’s jewelry, eye makeup, high heels, etc . . .
On a deeper level, I don’t feel like I’m neither gender or androgynous or NON-BINARY; I feel like I am BOTH GENDERS. I feel like I have a fully-realized male side and female side. If I had been born with a male body I would be OK with that, but I’m also happy with having female anatomy, so I don’t have any physical “dysphoria.” It honestly doesn’t matter to me, although being physically male is more advantageous.
[I don’t like the word dysphoria used in conjunction with gender expression, because it is loaded with the judgment of a presumed “norm.” Same reason I can’t stand the word disorder used for spectrum conditions – the NT presumption and judgement are there. There’s nothing wrong with how anyone expresses their gender, genders, or lack of gender – the problem is with society’s narrow definitions. Say gender diverse, please, in reference to people on the gender spectrum.]
My gender diversity is entirely social and expressive in nature.
The only term for this I’ve ever heard is “two-spirit” but it is considered cultural appropriation by American indigenous people to use this term if you are not native. So what’s a girl/boy to call his&her-self?
BIGENDER is the correct term, which many of you are hearing for the first time. Now, of course, this isn’t the same as being bisexual – one can be gay or heterosexual AND bigender. Being a straight bigender woman is a little difficult. People, of every gender and orientation, tend to “read” me as lesbian or bisexual. This is enough for most heterosexual guys to rule me out – just not fem enough to fit in with the social constructs they are comfortable with and unthreatened by. It makes dating a nightmare, but dating is a nightmare FULL STOP.
NON-BINARY is identifying as neither gender or being gender ambiguous. Being BIGENDER is needing to express both genders within and/or without oneself. (But not necessarily at the same time.)
In addition to LGBTQ folks, there are non-binary, bigender, and intersex (physically gender-mixed) people who tend to have higher rates of autism or neurodiverse traits. Many of us feel the terms AFAB – assigned female at birth – and AMAB – assigned male at birth – are genuine ways to describe the experience we’ve been through. Society, the hospital, our peers, and our families forced a very particular set of gender expectations on us based solely on what we had between our legs at the hospital we were born in. It’s not fair or realistic to the way gender also exists on a spectrum.
Some researchers in Holland did a recent study on autism in gender diverse people. In children and teens referred for “gender identity disorder” (GID), 7.8% of them were also identified as autistic, compared with not even 2% of the general population. In a study that reversed the method by testing autistic people for “gender variance,” the rate was an unsurprisingly high 7.9%. The jury is still WAY out on the correlation and/or causation factors of the overlap, but it is certainly worth looking into further.
As a great article on autism and trans identity in The Atlantic by Bryony White points out, “approaching autism in strictly male/female terms has still largely excluded gender-diverse people from the conversation.”
In the meantime, just as with any difference that is harmless to others, let’s just accept it and not give people who already have problems fitting in an even harder time.
I have to admit this was nothing I’d ever thought about much until a few weeks ago when a few new acquaintances pointed out that the generally accepted symbol for the autistic community is the blue or multi-colored puzzle piece and that it makes them uncomfortable. Being recently diagnosed, I assumed my own interpretation: I had been confused my whole life because I didn’t have a scientific framework for understanding my perceptions and behaviors. When I figured out I was autistic and then got officially diagnosed it was like I had been given the one missing piece of a mystery I’d been trying to solve for way too long – why am I different?
My research revealed that the professional who introduced the use of the puzzle piece, Gerald Gasson, a parent and board member for the National Autistic Society in London, had a somewhat different intention. An article on the site The Art of Autism says, “The board [of The National Autistic Society] believed autistic people suffered from a ‘puzzling’ condition. They adopted the logo because it didn’t look like any other image used for charitable or commercial use. Included with the puzzle piece was an image of a weeping child. The weeping child was used as a reminder that autistic people suffer from their condition.”
Parents often see it as an expression of how “puzzling” their child’s disorder is. One said, I believe my son is a mystery – still, after almost 26 years, and he is ‘missing’ certain understandings, skills and abilities as an ‘autistic person.’ He would tell you – as he told a group of volunteers at a training he helped me facilitate yesterday ‘I just don’t get certain things.’ Is it insulting to imply through imagery a particular truth about him?
Yikes. Yes – it is insulting if the focus of that symbol is on particular negative traits rather than positive or neutral ones.
Another mother says, It’s a symbol – perhaps to some, it’s a ‘missing’ piece. I’d like to think our kiddos are the COMPLETING PIECE of the human puzzle.
One is focusing on the negative traits they see in their child and the other is romanticizing the autistic experience. However, it doesn’t help that there are many retroactive attempts to make the puzzle piece seem more positive, when it was initially meant to symbolize our “mysterious-ness” to neurotypicals who had not yet figured out how to communicate in our styles and truly hear us as a community.
As an autistic woman named Jane Straus explains, “It is inaccurate, in its assumption of boy-blue, and its assumption that we are so impossible to understand. Those of us who can communicate in a way that normals understand are so simple and direct in what we say, that if they would just pay attention we would be not be a puzzle at all.”
Other criticisms from the adult neurodiversity community are valid as well:
- The puzzle piece was popularized in America by the organization Autism Speaks, which despite hiring an all-star public relations team to change their original neurodiversity-negative outlook, still has no autistic individuals on their board of directors or leadership team. (There was one, but he became disgusted with the organizational perspective and left. He has not been replaced.) The majority of autistic adults believe that autism only speaks if someone with autism is doing the speaking and they have a great deal of animosity towards this mega-organization.
- The puzzle piece is a symbol based on a child’s toy. Now that we know that the majority of spectrum people alive today are over the age of 18, but missed or misdiagnosed in the past with multiple “mysterious” disorders, a childish symbol feels babyish and condescending to a group of self-determining, intelligent, and sophisticated people from all walks of life. We constantly have to fight the perception that autism is only a childhood disorder and being spoken to as if we are not adults in our day-to-day interactions.
- The puzzle piece was chosen by parents and organizations FOR us as a symbol to represent a health problem rather than being chosen BY us as a different way of being that is acceptable. In short, no one asked autistic people if this was a symbol that we wanted. Ours is a struggle to define ourselves and have the right to be self-determining.
The problem with advancing the knowledge of autism and improving our outcomes isn’t a lack of research money, determined parents, public concern, autistic activists, or dedicated professionals trying to figure us out – it’s that we are already speaking out eloquently and frequently and we are being ignored, discounted, gaslighted, and contradicted by people who do not share our neurological perspective and have professional reputations to uphold. The natural consequence of this is that appropriate support services for adults have not materialized yet, because our opinions are not considered expert even though we live autism every day.
We have yet to be considered authorities on the autistic experience because the cultural stigma around any sort of mental difference is still vast and insidious.
This leads me to why the puzzle piece must be phased out eventually. As I mentioned, I personally chose to see it as a positive symbol as do many other spectrum people. This is perfectly alright. If you are an individual who creates artwork based on the puzzle piece, has a tattoo of one to show your support for us, or a clinician with puzzle artwork in your office – do not despair! You haven’t done anything wrong. Continue to enjoy this symbol.
Let me make this crystal clear – every neurodiverse person is a fabulously unique individual and has the right to decide what representative symbol they want to adopt for themselves which they are most comfortable with.
Yet a growing number of autistics are more comfortable with the color gold (for Au) and/or the multicolored infinity symbol to represent our burgeoning civil rights movement. As a group, we need a symbol that isn’t triggering for a large number of us.
The puzzle piece with its current meaning about how confusing we are is distressing to people who’s biggest frustration is constant misunderstandings and miscommunications with a world that won’t meet us half-way in the first place. Understanding is a two-way street, and the majority neuro-culture puts all the responsibility and consequences for misunderstandings squarely on us. This is deeply problematic.
We need to finally define ourselves, with or without the backing of professional organizations, because so much of the true autistic struggle is about being forced into becoming something we are not – someone publicly approved of and cooperative and compliant. But not ourselves.
This is a terrible erasure.
In America, there is a tendency for established systems and institutions to fail at self-examination, official apologies, and restitution for past harms. Part of that evolution is admitting to mistakes with public apologies that don’t have to be demanded, examining organizational perspectives against the consensus in the population being served, and phasing out symbols that carry historical baggage for that population.
I hope that any group, professional, non-profit, or organization which seeks to improve the lives of autistics and neurodiverse people is open to possible changes in the future and will work to center the voices and respect the feelings of spectrum people.