Category Archives: Relationships

Autism, Communication, Relationships

[Kerry] Communication Differences

(Sorry we’ve been scarce on this blog lately; there’s been a lot going on in our offline life that’s prevented us really having the spoons to update any blogs, whether that refers to this one, our Tumblr, or our locked Dreamwidth blogs.) 

Anyway, I’ve been thinking about social interactions with people, both on and off the spectrum, and how we, as a system, process these interactions. For the purposes of this post, I’ll just say ‘non-autistic’ to refer to people not on the spectrum, rather than ‘neurotypical’, since there are people who aren’t autistic, but don’t consider themselves neurotypical (eg, people with ADD, bipolar, OCD, etc). 

While we definitely do have non-autistic friends that we really enjoy being around, it’s still harder to interact with them in person than it is with autistic people. It doesn’t matter how close they are to us, or how much we trust them. They feel a bit ‘opaque’, even if they’re clearly interested in spending time with us and enjoy our company. You’re never quite sure what they’re thinking. We’re better at picking up basic emotions in people (usually, telling the difference between a negative emotion and a positive one) than we used to be when we were younger, but there’s still this veil that’s up that we find hard to see past, no matter how much we learn social skills. It’s still a matter of intellectually realising what people want, rather than moving based on intuition. 

Autistic people, wherever they fall on the spectrum, are much easier for us to read intuitively, and it’s easier to pick up that they’re upset. It’s not just an intellectual interpretation of their emotions, unlike what occurs with most people who aren’t somewhere on the spectrum. I’m not saying we can understand ALL autistic people’s emotions immediately or with accuracy, just that it’s easier by far. They’re also easier for us to open up to; they’re more likely to get more candour earlier in the relationship than others. When befriending non-autistic people, it generally takes us longer to come to trust and feel comfortable with them. 

I think that the social-skills deficit that autistic people have is basically a difficulty interacting with people not on the spectrum, while interacting with autistic people involves more intuition, since they have more expected patterns of social behaviour (for them, anyway). 

Online, it feels as if that’s levelled a bit, and it’s easier to read people off the spectrum, with the same level of readability applying to people on it. We have misinterpreted some things that other people on the spectrum said online, and it’s actually more likely for us to misread autistics online than it is in person – the likelihood matches what would happen with members of the general public – because a lot of the social distinctions that are more apparent offline aren’t as much online. There is an area where such things are a bit less level, though: we’re still likely to be more candid with other autistic people than we are people who aren’t. 

Standard
Autism, Relationships

[James] Autism and Agency

Some friends of ours were browsing eBay and found some listings by a mother who was selling some of her autistic daughter’s toys because “she doesn’t play with them.” Her justification was that she didn’t play with them typically, and simply wanted to “acquire” them. (I’m imagining that this person is unaware of some styles of autistic play, in which a child prefers to organize or arrange their toys, rather than imaginative or interactive play. While we did engage in imaginative play growing up, there were times when we arranged other items, like coins and books.) I know that had someone sold possessions of ours without our permission when we were younger, we would have noticed it and probably would have melted down, since something had been taken from us that provided us comfort.

While this mother’s actions by themselves are rather “micro,” the behavior this mother is exhibiting points to a larger-scale social dynamic that I’ve observed between autistic people and some of the NTs around them, particularly parents. There is this assumption that we, as autistic people, fundamentally lack agency, and that it’s appropriate for parents, caretakers, and other people to impose their own wills upon us, regardless of its actual adaptive benefit. In this case, selling this child’s toys because she doesn’t play with them “normally” isn’t justifiable. Her simply looking at them, collecting them, or arranging them isn’t inherently harmful. If she were hitting people with those toys, then yes, there would be a problem. There’s a difference between something being atypical and something being harmful, and the problem with a lot of autism parents is that they conflate the two. There also seems to be an unspoken assumption that our own desires are irrelevant, as though we’re empty husks, there to be filled with “normality.” There are so many attempts to steer autistic people away from being themselves, and it often seems as though these efforts are made to make the nonautistic parents or teachers more comfortable, rather than correcting something that’s directly harmful.

While I do understand the importance of social cues and unwritten rules, they should be taught to autistic people in a way that doesn’t marginalize their existence, and benign, private behavior shouldn’t be suppressed simply because it “looks bad.” It may be a example of deviance from a particular set of social norms (well, folkways, to be specific), but it’s not inherently bad. We are still agents, whether we’re neurologically variant or not. We deserve the right to exist as we are, even if we must learn how to cooperate with the world around us. Unfortunately, some people seem to think that “cooperating with the outside world” necessitates crushing our agency and preventing us from doing anything that looks remotely autistic. Sorry, that’s not teaching us cooperation; that’s just flat-out suppression. Stop destructive behavior*, yes—nobody needs to be hitting people—but don’t act as though we aren’t full people. Don’t sell off our belongings because we’re “using them the wrong way.”

All of us, whether autistic or not, require guidance as we grow and discover our places in the world. That being said, though, there’s no need to act as though we lack any sort of agency. Assuming that is adhering to some of the nastiest prejudices about autistic people, and is more counterproductive than it is helpful.

*and when I say “stop destructive behavior,” I don’t mean through using abusive aversive methods. Also, there is often a reason behind an autistic person’s meltdown – in many cases, it’s an intense reaction to being overloaded, frustrated, or having one’s space invaded.

Standard
Autism, Cognition, Disability, Psychology, Relationships

[Kerry] The Problem with Some ‘Autism Parents’

There are two types of problematic parents we’ve noticed: those that infantilise their children, incapable of seeing that their children are people and can self-advocate, and those parents who are hellbent on ‘normalising’ their children with ‘tough love’, which in its most extreme cases manifests in psychological and emotional abuse that leaves lasting scars. For some particularly bad parents, physical abuse is used as well.

We don’t have personal experience with family members who only use infantilisation, but we are far, far too familiar with tough ‘love’. I put love in quotation marks, because the behaviour was tough, but I don’t think it was very loving. Trying to humiliate someone having a meltdown isn’t loving. Shaming someone for being overloaded or struggling with certain scenarios is not loving. Becoming more critical and snappish once a nonautistic sibling comes along is not loving. It is abusive, and it’s reflective of the harmful ideas surrounding the autistic spectrum.

Because of our experiences, most of this article will be focussed on the harmful behaviour on the part of ‘tough love’ parents.

Their feelings of parental protectiveness are overlaid with resentment about their having an ‘abnormal’ child, one who may never fulfil any of the goals that parents associate with success. My child will never get a degree from Harvard or Oxford. My child will never become a doctor, lawyer or nuclear physicist. My child will never learn anything at all. Never, never, never. They’re so focussed on the possibilities of those ‘nevers’ that they work assiduously to stamp out the autism that they fallaciously view as ‘separate’ from their child’s existence. They want that typical child they’d been hoping and dreaming for, not the neurologically variant child who happens to be right in front of them. They see the child as a burden, a symbol of their failure to have a child that meets society’s expectations of what the perfect child should be, and they dread having to potentially look after the child for longer than the absolutely must. Things would be easier with a typical child, and these parents’ actions never let the child forget it. There is this undercurrent of being unwanted, of being flawed, in the child’s perception of the parent’s actions.

In order for these parents to get a ‘return on investment’, they subject their children to behaviour-modification techniques. This can be handling conspicuously autistic behaviour with traditional discipline like corporal punishment, revocation of privileges and aversives, rather than trying to understand the child’s behaviour and finding adaptations and services that allow them to make more sense of the world and have fewer negative reactions to it.

There’s often a problem when these parents see a particular atypical behaviour, and only see the behaviour, not the intention or stimuli that might motivate it. For instance, a parent who only looks at their child’s behaviour may interpret a meltdown as a deliberate attempt to make trouble, rather than a response to sensory or emotional overload. A ‘tough love’ parent may attempt to correct this external behaviour with traditional discipline, rather than trying to correct the situation, since they’re uninterested in the child’s interiority. Achieving success for this kind of parent is indistinguishability from a child’s nonautistic peers. It’s a superficial response to a deeper problem.

The problem with this childrearing style is that they’re not focussed on who their children actually are. They’re fixated on an Ideal Child, someone who their real child will never be. (This behaviour also exists with homophobic and transphobic parents, who refuse to see their queer children for who they are, and try to force them into a heteronormative or gender-conforming model ‘for their own sake’.)

People may write volumes and volumes about how we lack ‘theory of mind’, but this lack of reciprocity can go both ways. When parents kill their children because of their autism, it’s absolutely nonsensical to claim the lack of empathy only exists on our end. Most of these dysfunctional parent-child relationships don’t end up in the child’s death, but they can result in psychological abuse that leaves lasting damage to the child’s emotional health. When you’re constantly second guessing your self-worth and your abilities, that’s not a healthy place to be in. When your feelings are invalidated and people aren’t even trying to work out what’s wrong behind the visible behaviours, you might end up in an emotional state you’d rather not have.

Trying to correct who someone is isn’t the right way to go about things. Someone’s being autistic isn’t a crime. While being autistic does present adaptive problems, the more humane response is to accommodate and to teach a child healthy coping mechanisms that are person-centred, rather than trying to force someone to contort themselves to fit into a box labelled ‘Indistinguishable From Peers’.

In our case, we cut contact with our immediate biological family. Their tough ‘love’ was more damaging than simply letting us exist as who we were, and I think it turned out for the worst. Learning how to navigate the world comfortably involved years of trying to undo what they had done, and it’s still continuing today, even though things are easier for us than they were even three or four years ago. For people on the spectrum, not having that family support means that they are being deprived of access to services and help that most people are fortunate enough to have. It’s meant we’ve had to scramble to find resources and support. We have been able to, but it took several years.

While I believe the vast majority of autism parents are well intentioned, sometimes things go wrong, and people erroneously conflate being nonautistic with being a more valuable member of society. Sometimes, when those stereotypes are internalised too much, and are combined with a parent’s own negative personality traits, that can result in behaviour that is ultimately destructive to the autistic child’s psyche–or worse, their very existence.

Standard
Communication, Relationships

[Kerry] Nonviolent Communication

Sorry we haven’t updated this blog as frequently as we would have liked. We’re going through a rather difficult time emotionally, so it’s a bit difficult for everyone to gather together the spoons to write properly.

Over the past year or so, I’ve become fond of the Nonviolent Communication process. I can’t say that I always stick to it, but I do try and use it as a framework when talking to—or talking about—other people. I don’t think that it’s 100% foolproof, but in my case, it works for me, and helps me to rein in some of my tendencies to form misconceptions about other people’s behaviour.

Basically, Nonviolent Communication (NVC) is a process that helps people to connect to each other by dealing with the underlying needs and emotions behind someone’s words or communication, regardless of how they’re addressing you, and empathising with those needs to promote mutual understanding. Marshall Rosenberg, the developer of NVC, talks about it in detail in his book Nonviolent Communication: A Language of Life. NVC discourages evaluating, labelling and judging behaviour, and encourages focussing on the needs of the person who happens to be exhibiting that behaviour. It’s focussed on your own reactions and the ability to empathise with the other person, rather than labelling the other person’s actions. This doesn’t mean that it excuses actions that would be considered inappropriate or hurtful, but that it provides tools to understand why someone is behaving a certain way, and how to communicate with that person to achieve more balanced, healthier communication patterns that allow both parties to get their points and feelings across effectively. It’s not ‘social mind-reading’; it’s a combination of self-awareness and a willingness to try and understand the other person’s point of view. Josh Uebergang, of the blog ‘Tower of Power’, describes it in detail over here: the way in which he describes it is pretty detailed, and is a lot clearer than what I would come up with.

It’s helped me tremendously, not just in social interactions, but in communicating with myself. For instance, when dealing with people who have hurt me in the past, it allows me to note the effects of someone’s behaviour without engaging in unnecessary character judgements. In general, character judgements don’t accomplish much; they merely put people on the defensive and make it difficult to resolve a situation. In the past, I would have been more likely to make a character judgement and go ‘wow, this person is fucking terrible’, rather than ‘wow, this person is hurting and is saying things like this because there’s an unmet meed, and they’re expressing it in a way that may come across as something else’. It’s a lot more difficult for me to hold grudges if I’m thinking that way. This doesn’t necessarily mean that I’ll want everyone who’s affected me badly to be close to me, but that I’m aware that they’re people with feelings as well, and that regardless of my own experiences with them, I shouldn’t go out of my way to dehumanise them or point fingers, shouting, ‘This person sucks, and you should completely and utterly avoid them and treat them as though they’re Satan incarnate.’ Learning how to empathise and step back from pointing my finger and judging has been an instrumental part of my development as a person, and I want to share that.
It’s still a learning process for me; sometimes I still criticise certain behaviours, although I generally refrain from making character judgements about others, as it’s generally not my place. I’m still learning how to frame certain things as constructive criticism of someone else’s behaviour (ie, ‘they’re approaching this in a way that may be difficult for others to understand’) as opposed to value judgements (‘this is EVIL!’), but I think that I’m in a healthy enough place to know that I’m not going to be constantly judging others’ motives.

Standard
Autism, Communication, Psychology, Relationships

[Noël] Eye-contact, the Internet, and people-mapping.

Like many other autistics, we struggle with maintaining consistent eye contact when talking to people face-to-face. Interestingly, our eye-contact difficulties translate to the Internet, even though we are not actually looking into others’ eyes when leaving comments or chatting on instant messengers. We have to actually avert our eyes from names (and icons, sometimes, if it is a face) when chatting or leaving comments, because for some reason, our brain processes that as “looking into someone’s eyes,” even when we are not technically being looked at. We generally scroll down so that we only see the comment box when replying, after seeing whom the comment is from.

I consider this to be related to our eye-contact difficulties, because the avoidance of names and icons does not occur when reading others’ entries, comments, and chat transcripts—only when we receive comments or are in an instant message conversation. There seems to be a “switch” tripped in our brain that says “People are interacting with you; do not look at them.” Names and icons attached to comments and messages become “eyes.”  This is not to say that we dislike comments or instant messages—otherwise, we would not have an instant messenger account, and we would disable comments on our blogs and journals—but that there are some of the same autistic reactions that occur when social interaction over the Internet occurs.

Unlike people who parse others on the Internet as being similar to computer readouts, or “words on a screen,” many of us tend to be intensely aware of the presence of others, even if they are communicating textually. They seem physically present in comment threads and on forums, and this makes it incredibly difficult for people here to say things like “It is just the Internet. You cannot see them, so feel free to treat them badly with impunity.” This is not to say that we are physically hallucinating people, but that…their presence, as other people, can be felt. I think that that perception of people contributes to the way in which our brain maps user names and icons to people’s eyes. If people’s presence is already parsed in a material way, then why can the brain not map analogues to eye contact on to that Internet presence?

Standard
Mental Health, Panic Disorder, Psychology, Relationships

[Kerry] Thoughts on panic issues.

Most of this is from my personal point of view, although the panic affects everyone. I can’t speak for my headmates in that deep sense, although I’ll try and generalise.

We have a formal diagnosis of Panic Disorder (received sometime in 2010; only found out about it recently, as it’s in our DSPS records for college), which has been honestly pretty fucking awful to deal with. In the past, it made us more unstable, and made it difficult for us to trust, engage and talk to people.

For me, it’s this constant tingling feeling in your body. Chills, the occasional shake, the feeling of a knife in your back, a metallic sensation in your mouth. Before the hormones, crying was part of it, too. A pervasive fear that everything is going to fuck up, and that you’re fucking up, and that everyone thinks that you’re a fuckup. That you’re the most disgusting, horrible being on the planet, and absolutely repellent. A fear that you’ll end up in a situation that will bring on more panic attacks, and scrambling to avoid those situations. For Hess, it’s similar, but I know that he tended to lean more towards the teary and angry side as opposed to the chills, tingling and shaking.

Because we were so consumed by the panic and its effects on our brain, and because we struggled with social judgement in the first place, a lot of…stuff that people honestly regret happened. Add being involved with people who were either emotionally volatile or extremely sensitive, and it was a recipe for social disaster. There was a lot of unfiltered anxiety that came out in conversation, and it was hard for people to separate rational self-talk from irrational, panic-induced talk. ‘You must REALLY think that I suck’, etc. ‘I muck up everything.’ ‘I don’t deserve to be alive.’ Being around us back then was…honestly more difficult than it probably is now. We felt bad about the way things were coming out, and about the miscommunications and the panic-fuelled conversations and frantically searching for reassurance, but we didn’t know what to do about it, back then, and I know that it contributed to rifts in some relationships.

I hope that some of those people that I clashed with in the past are willing to forgive and give me/us another chance, but I’m really not holding my breath; I know these things can be…incredibly fucking difficult. Some people have, and I’m thankful for that.

In October 2009, after a series of painful events, and major shifts in our lifestyle—we’d gone from existing in a ‘shutdown’ state to becoming full-time students and doing an internship in the course of a few months—we could no longer pretend that we could handle the effect that the unchecked panic and anxiety had on us. We felt ourselves falling off the deep end, and it had to stop. M. went to our psychiatrist and he prescribed us Celexa to handle the anxiety/panic issues. He was one of the few Plures-members without residual bad feelings towards psych meds, SSRIs in particular.

We’ve now been on Celexa for about a year and a half.

Celexa has some side-effects that aren’t great, but the tradeoff is that it reduces the severity of the panic attacks, and it also helps us to separate out rational interpretations of events from the irrational ones. When an irrational thought like the ones I described earlier floats into someone’s mind, they’re able to go ‘hey, no, this is irrational; let’s rewrite the thought so that it’s logical and not ridiculous’. There’s less need for external reassurance that an irrational thought is, in fact, irrational. This doesn’t mean that bouts of depression don’t still happen, but they’re less likely to be expressed in a way that comes across as unstable or hurtful to others. It’s more of an internal phenomenon, and depressions resolve themselves more easily. The looping thoughts might happen, but they can be compartmentalised and dealt with—people don’t give voice to those thoughts in the same way. I’d say that we have a lot more internal resources to handle stressful situations.

Biochemically, emotionally, physically—we’re not the same people years we were two, or four, years ago. These shifts, along with some philosophical realignments over the course of 2010, led us to change our system name to ‘Plures’, which we announced last month. It wasn’t an act of hiding from our past as much as it was symbolic of growing from it, and changing to become better, healthier people.

Why the hell am I posting this publicly instead in one of our private, friendslocked journals? Well, I don’t know if I’m quite ready—paradoxically—for this to be posted there to show up on people’s friends lists. There’s something a bit cathartic about writing about this sort of thing publicly.

Standard
Philosophy, Relationships

[Kerry] The shape of a life.

…it should be the questions and shape of a life, its total complexity gathered, arranged and considered, which matters in the end, not some stamp of salvation or damnation which disperses all the complexity in one unsatisfying little decision…’

There’s a quotation that I first came across last year, in Tony Kushner’s Millennium Approaches. When I read those words, they stuck with me. I came across that quote at a time when I really needed it.

The shape of a life. Total complexity. To me, that represented the idea that people were complex, holistic beings, not pure as the driven snow or silent-film villains twirling their moustaches menacingly. That people aren’t unassailably good, and they aren’t irredeemably evil.

That gave me hope, after having dealt with a lot of personal stuff in 2009, in which I felt that people were treating me as though I (and my headmates by extension, because they tended to conflate people) was irredeemably evil. Totally cutting off relationships, misconstruing my intentions. Some of that was related to untreated panic disorder that manifested in irrational behaviour that came across as something that it wasn’t intended to be. (Since that time, we’ve sought treatment for it. That’s for another post, though.)

I went through a lot of personal weirdness after that, wondering if I was a terrible person who didn’t deserve to be loved or cared about.

A shift happened, though, when we were taking some queer studies and health classes, two of which focussed on HIV/AIDS and how it affected different communities. One of the works we studied—in the queer studies HIV/AIDS class, that is—was Tony Kushner’s Angels in America. I don’t really think that I connected with the play as a whole, compared to some of the other works we read and watched in class, but that quote, about the shape of a life, and focussing on the whole of a person rather than ‘stamping them with salvation and damnation’.

I started thinking about what I wanted the shape of my life to be. Was I going to spend it in bitterness, thinking about all the people who’d hurt me in the past, storing up grudges and constantly spewing bilious rants about them? Or was I going to try to understand people and their motivations? Deal with the issues dealt me in life, and try and become a better person? I took the second path. Even if someone isn’t particularly fond of me, I have to remember that they’re also sentient, and have feelings, and aren’t monsters. Even if people, like certain members of our biological family, do things that are destructive to others, that doesn’t mean that they’re irredeemably evil; rather, it means that they have deep-set stuff going on that hasn’t been dealt with in a healthy way.

Am I claiming to be perfect? Fuck no; I still fuck up, occasionally misspeak. I’m flawed. Sometimes I’m too loud; sometimes I come on too strong; sometimes I let my opinions get the best of me. But I’m still trying, as hard as I can, to have the shape of my life be a good one.

Standard