There was also something quite meta at play, I now realise. In the delightful yet serious game of self-identification with the group, there also exists the teasing possibility of intuiting what autistic culture/s might be collectively speaking. Not wishing to be divisive, or pin down a beautiful butterfly, it matters greatly to know this and to be able to articulate it. Yet it is a very tricky area precisely because of the double empathy problem.
Because last month was #MentalHealthAwarenessMonth and this month is #PTSDAwarenessMonth, let’s talk about classic PTSD, and another related mental illness, which is c-PTSD, or complex PTSD. A thread.
It often seemed like people around me didn’t have so much trouble learning what direction to grow in. They just knew how to become a human being. They knew when to say hello and goodbye, how to jump rope, ride bikes, what to talk about, and what to wear. They were growing out of seeds with a more detailed plan imprinted in their DNA. They could water themselves and grow into a tree. What would I grow into? I wasn’t sure.
Have you ever heard a seemingly successful and ‘high-functioning’ Aspie try to explain how exhausting a day at work can be, or say that Asperger’s ‘ruined’ their career? In this article, I will provide just one detailed [real-life] scenario along with a commentary and analysis from an objective standpoint. Aspie’s and neurotypicals (NTs) both can benefit from having a deeper look inside to gain an understanding of what’s happening on both ends.
Given the fanfare accorded to this study, the evidence for its central claim is remarkably weak. The differences between mice with autistic and non-autistic donors are subtle if they exist at all. And there are reasons to be skeptical about even these small effects.
Autism is defined in terms of human behaviour. And so the claim that mice showed “autism-like” behaviour relies on an assumption that the mouse behaviours under investigation are in some sense equivalent to the behaviours that define autism in humans. We assume, for example, that reduced ultrasonic vocalizations are analogous to the language and communication difficulties experienced by autistic children, or that marble-burying equates to repetitive behaviours and interests. And those assumptions may be wrong.
In fairness, this isn’t a criticism of this study in particular. It’s a challenge for any researcher attempting to study autism via mouse behaviour. But it’s important to remember that when we say “autism-like behaviour”, what this really means is “behaviour in mice that can be described using the same words that we use to describe autism”.
Function labels are how people categorize us in a euphemized, politically-correct way to say ‘r-tarded’ or ‘not-r-tarded.’ I’ve actually heard people say that, in 2018. It puts me in a position to have to constantly explain how and why it is inappropriate to use this language, only to be regarded as a “socially-difficult aspie who loves to correct people.” The irony of me being considered “mind blind,” “lacking in empathy,” and “socially awkward” notwithstanding, I would love nothing more than to be relieved of the burden of constantly having to explain to people why it’s not okay to talk about human beings according to their ability levels. Frankly, if that’s the bar, I’d rather be called low-functioning. Function labels give people permission to see me in terms of my IQ, my verbal abilities, and my ability to socialize in the way neurotypicals do. It carries implications about my emotional stability and my ability to maintain a job. Everything about autism is more complicated than a set of over-simplified platitudes. –Rayma, writer, USA
It feels like they are in a way “thanking” me for not making them feel uncomfortable. Like I’m simply existing, trying to cope in a world that is hellbent on misunderstanding me from day one, and all they can see is, “You are different, yet you’re bending to my comforts and that’s great!” No. I’m living the only way I know how. You’re a non-factor in this, and yet you’re making me want to crawl in a hole and avoid the world. –Rae, direct support professional, USA
On top of that, among the things that autists tend to be no good at conforming to are gender norms. It is increasingly widely recognised that there is an intriguing correlation between autism and variant gender identities, but this is a far broader thing. Boys are expected to be competitive, in social games that are often beyond us. We are expected to enjoy team sports, when teams are baffling and most of us are dyspraxic or at least clumsy. We are expected to be part of a universal boys’ club by default, when for the most part other boys are no less alien to us than girls are.
All of this means that the average autistic boy suffers a good deal from the patriarchy. Male privilege means something quite different for someone able and willing to dominate others than it does for a socially confused autistic boy who just can’t get a handle on masculinity. It’s something else again for someone who’s got enough of a handle on masculinity to reject it outright.
Many of the things that men do, to the detriment of women, are things that autistic people are particularly prone to. Men too often talk over women, and fail to listen to what they say; autists tend to find it hard to know when to stop talking on topics of personal interest, and can be slow to process what other people are saying. This can manifest as extreme forms of what men do to women all the time. On the other hand, in autistic women and, to be fair, a large number of men, it can go the other way: staying quiet for fear of imposing or offending in some way.
“If you do the math, according to the PTSD criteria in the DSM-5, you can have 636,000 different combinations of symptoms that that describe PTSD,” says Danny Horesh, head of the Trauma and Stress Research Lab at Bar-Ilan University in Ramat Gan, Israel. Given all the traits in people with autism that may overlay these permutations, “you have a lot of reason to think that their version of PTSD might be very different,” he says.
Abuse, sexual assault, violence, natural disasters and wartime combat are all common causes of PTSD in the general population. Among autistic people, though, less extreme experiences — fire alarms, paperwork, the loss of a family pet, even a stranger’s offhand comment — can also be destabilizing. They can also be traumatized by others’ behavior toward them.
“We know from the literature that individuals with autism are much more exposed to bullying, ostracizing, teasing, etc.,” Golan says. “And when you look in the clinic, you can see that they’re very sensitive to these kinds of events.” Among autistic students, Golan and Horesh have found, social incidents, such as ostracizing, predict PTSD more strongly than violent ones, such as war, terror or abuse, which are not uncommon in Israel. Among typical students, though, the researchers see the opposite tendency.
How we are failing autistics through autism hiring initiatives:
Using and misrepresenting a marginalized minority. Creating a disabled people campaign to increase a company’s brand awareness and appeal to investors and clients. Repeatedly depicting stereotypical autistic Caucasian male who is tech savvy, and not depicting autistics of color, LBGTQ autistics, and autistics across the gender and age spectrum. No representation of autistic individuals who are nonverbal/mute or physically disabled.
Promoting the (stereotypical) strengths of autistic for public relations, without addressing autistics challenges, and how challenges affect job performance and job retention and quality of work life. Not publicly sharing the pitfalls and dangers of diversity hiring initiatives, such as employee turnover, employee depression, employee isolation, and employee suicide, nor offering ideas and solutions to these pitfalls.
• Limited support once an autistic sets foot through the workplace door. The at-risk autistics, with coexisting conditions of PTSD, mood disorders, and suicidal thoughts, being swept into the workplace without forethought to how they might respond, what supports will be needed.
• Discrimination in equal representation and opportunity: Disabled population as low wage earners, while high wage earners are not disabled. Management positions frequented by non-autistics employees, while employees on the autism spectrum are in lower-tiered positions. Not having any autistics on the advisory board or board of directors. Not making job opportunities for autistics available in the fields of leadership, human relations, and communication.
Neurodiversity Hiring Initiatives: Are They Failing Autistics?
They asked me ‘how do we manage all these politically correct extremists?’ Not so much a ‘Dixer’ question but I answered it anyway. I said that ‘political correctness’ tends to be an insulting way to describe inclusiveness and wanting to be respectful of people from groups that face disadvantage in society. As such I didn’t want to do anything to ‘address political correctness’ and said it was a good thing to have.
Why does it matter? Because we get all these conferences for ‘autistic females/women’, and all those books for ‘autistic females/women’. There are blogs about autistic females, videos about autistic females…
…and the rest are erased from view. In most cases there’s not a mention of gender diversity.
Autistic people have lamented the tendency for others to interrupt our discussions of human rights or other political topics, in order to ask us about our toilet training or sexual histories. This aspect of the self-narrating zoo exhibit phenomenon has caused many autistics to give up mentioning our autism altogether in some contexts, to avoid the inevitable barrage of questions.
Another aspect of this is our role in autism organizations. Entire conferences have been arranged around autism, with autistic people playing a role only insofar as we can stand up and explain the way our senses and minds work. Veering too far off of this topic — or even away from the conventional wisdom on this topic — is a good way to become ostracized. Autistic people have paid heavy prices for becoming politically involved or questioning dubious treatments rather than simply describing ourselves and letting others do the talking. Those who could not praise us more five seconds ago, suddenly tell us we are terrible people who may not even be autistic. Some have gone so far as to publicly slander prominent autistic individuals.
Countless micro transactions take place on a daily basis in which invaluable commodities are exchanged. Good will is perhaps one of the most important commodities of all. In so very many contexts good will can be converted (somewhere along the line) into hard cash. Social fluency (of the dominant kind) creates the conditions for this powerful ‘alchemy’.
Without the means to wield this power autistic people can fall prey to a form of ‘social’ poverty which can create a devastating impact on a person over a lifetime, from infancy onwards, from the point at which a child’s babbling is labelled ‘not functional’.
This means that if you are autistic but you like reading novels, your autism quotient will be lower. So you could be less likely to be referred on to autism specialists for assessment. It also means that mathematicians may score higher on the questionnaire because they are interested in numbers –- but not necessarily because they are autistic.
Complex post-traumatic stress disorder (complex PTSD, sometimes abbreviated to c-PTSD or CPTSD) is a condition where you experience some symptoms of PTSD along with some additional symptoms, such as:
• difficulty controlling your emotions
• feeling very hostile or distrustful towards the world
• constant feelings of emptiness or hopelessness
• feeling as if you are permanently damaged or worthless
• feeling as if you are completely different to other people
• feeling like nobody can understand what happened to you
• avoiding friendships and relationships, or finding them very difficult
• often experiencing dissociative symptoms such as depersonalisation or derealisation
• regular suicidal feelings.
This is the kind of thing that a lot of dyspraxic people won’t talk about, but I think it’s important that people know that just because you see a person who is managing well, it doesn’t mean they’re not burning themselves out just to maintain a façade of normality.’
It takes Elly around one and a half to two hours to leave the house in the morning as it takes her much longer to organise tasks.
‘Once I’ve mentally psyched myself up for the day and dealt with making breakfast, I have to build in at least an extra half an hour for finding things I’ve lost like my bank card or shoes,’ she says.