Posts tagged support
Posts tagged support
TW: internalised ableism, quiet hands
Seriously. The most profound thing my doctor said to me pre-diagnosis was that I was A) stimming and B) that it was my native language. Being that I am strongly magnetised to language of various sorts but that it was being brought to my attention that I was…
Reblogging this for relevance. I also use the description of ‘feeling like I’m speaking my native language for the first time in decades’ when describing my experiences interacting with others on the spectrum. I’ve discussed it with Dr. Giesbrecht as well, how I and my other Aspie writer friiends have been conditioned to write for NT people for so long, that it’s more difficult to write in our ‘native’ way for other Aspies.
But I read this and I had to jump up and shimmy (one of my joy stims) because I’m so happy that thesiegeperilous has such a supportive, fantastic doctor, a doctor like Dr. Giesbrecht. Thesiegeperilous is so so so lucky; so many people on the spectrum don’t get permission to be themselves, let alone active support in relearning how to do that (for decades, I didn’t think I had a self to be, and I’m in my third year of therapy relearning how to do that, so I fully appreciate the scope of this blessing.)
I would love to hug this doctor and say thank you. But even more, I want to hug thesiegeperilous and say Welcome home. It’s a long road relearning how to speak your native language and be yourself (and find your self to be), and I know you have counter influences that may try to undermine what you’re doing for yourself, but please know that I’m here, cheering and stimming for you, because I know how hard this is but I also know that the rewards have been worth it.
This is by far one of the most important things I’ve seen on tumblr because It describes things I was not able to
Also relevant to our interests as so many of us live in a near constant state of anxiety, whether or not it’s reached classifiable levels.
Ok so my Tumblr app sucks and didn’t post this earlier like it was supposed to :(
I was asked when Quirky U is set to launch; right now, Dr. Giesbrecht is hoping to launch some time in June. Hopefully I will know more after Friday \o/
Remember those workshops that I’ve been helping to facilitate? Dr. Giesbrecht is the genius behind them, who created the material. The concepts will be presented on Quirky U, updated and expanded upon. Neuro-diversity, Friendship, Stress Management, Dating and more!
The all-important Self-Advocacy scripts mayyyy take a little longer, but he may put the original workshop hand-out onto the initial launch. Because the Self-Advocacy scripts are the core of the program, he does want to make the material comprehensive with video and demonstrations.
But wait, there will be more! I’ve discussed with Dr. Giesbrecht the number of requests I’ve gotten for more about how NT friends can support their AS loved ones as they are and step into their worlds. We’re in the early stages of developing deliverable content addressing these needs and it will be posted to Quirky U. I don’t know how long it will be, just yet, but rest assured, we will get there!
Dr. Giesbrecht’s material has changed my life for the better and I’ve watched it change a lot of other lives. I am SO EXCITED that I will soon be able to share it with everyone!
I can’t stim enough to express how excited I am. It’s coming! Dr. Giesbrecht’s #QuirkyUniversity!
I’m going to talk about something uncomfortable, that a lot of #Aspies go through. Trigger warnings all over the place! This is your warning. Leave now if you aren’t in a space to handle this kind of talk.
….Still here? Okay then.
Suicide attacks (the personal kind, not the terrorist kind) and depression attacks are recognised phenomena. They’re akin to panic attacks and anxiety attacks: A sudden, overwhelming surge of emotion, usually triggered by an event, that completely swamps the person’s ability to control it. Although recognised, suicide attacks are not well known because they’re seldom talked about. Not many people admit to having suicide attacks, partly because of the fear of being sectioned. Since suicide attacks are usually over just as suddenly as they appear, hospitalisation can be rather pointless. Although many NT people also have suicide attacks and they are also a common feature in bipolar disorder, I’m going to discuss them from the Aspergers perspective.
Suicide attacks are unlike ‘regular’ suicidal ideation, which develops over time, usually in response to a chronic situation. ‘Regular’ ideation usually has a logic to it and quite often a ‘hint chain’ leading up to an attempt. In contrast, suicide attacks are sudden and impulsive. They’re also silent - a person in the grip of an attack may talk about anything but what they’re thinking. Friends may have no idea that a person is in the grip of a suicide attack, they may think their friend is just overly upset. Suicide attacks are very embarrassing, so the person is unlikely to talk about it once the attack is over; friends and family may never know about it. And as mentioned, the person is unlikely to disclose the attack to a therapist.
Suicide attacks is the worst kind of meltdown there is. They’re triggered, they’re sudden, and they’re silent: These qualities can make suicide attacks especially dangerous. A person who makes an attempt while in the grip of an attack is much more likely to succeed.
Here’s the thing: They usually know it. Usually, the person having a suicide attack is quite aware that they’re thinking and acting irrationally, but - and this is vitally important to understand - they’re powerless to stop. They literally can’t stop these overwhelming thoughts and feelings. If they have alexythemia (as many of us do), they may not even know what it is that they’re feeling - what they do know is that the gyroscope of their world is spinning wildly off-kilter and they’re at risk of being flung off.
They also usually want to live, but the power of the attack prevents them from seeing any routes out of their immediate situation. Something has tripped their amygdalae to go into hyperdrive and now they’re awash in adrenaline, cortisol and other threat-response hormones and the calm-down switch is on the fritz. As long as the attack is overwhelming them, they can’t engage their troubleshooting mind. Overwhelmed and drowning, they may reach out, looking for any rock to cling to until the storm passes.
How the friend reacts can make or break the situation… but hang on, Catch-22 here - how do you know how to react, when you don’t know that the person is having an attack? Yep, it’s a conundrum alright, so here’s the quick and dirty list of do’s and don’ts when it comes to handling a very upset friend with AS who needs to hear a voice in the night.
Stay calm. This is vitally important: The person having an attack needs a calm, centred friend. The friend’s calm state communicates to the upset person’s hyper-stimulated amygdalae, communicating that there is no threat, it’s safe to calm down.
If you’re AS yourself, this won’t be so difficult because the situation engages your natural state of being: Your friend has a problem and has turned to you for help. If you’re an NT, things may be a little different: The natural response of most NTs is to try to get the person to talk about what’s upsetting them, right away, so that they can align their emotions with those of their upset friend. Fight that instinct, especially if you suspect that your friend might be in the grip of an attack. It is vitally important that you not become engaged with your friend’s emotions — they’re counting on you to be the calm center that they can cling to.
Talk about anything else. This one is more difficult for both AS and NT people, because both immediately want to talk about what’s wrong. The AS person wants to trouble-shoot the problem and look for solutions; the NT person wants to sympathise with their upset friend to make them feel better. However, a person having a suicide attack won’t talk about the problem right away and trying to pressure them to do so could backfire. If your upset friend doesn’t want to talk about it yet, back off and talk about something else. Do you have fandoms in common? Hobbies? Have you seen any good movies/read any good books lately? Did your pet do something silly today? — Anything, I mean anything.
By staying calm and talking about anything else, you send a message to the upset person’s amygdalae telling them that the threat has passed, that they’re safe. Your friend needs that. Just keep talking.
Be objective. Eventually, your friend may calm down enough to talk about what’s upset them. An AS person will want to analyse the situation and look for what they did wrong. An AS friend can help here because of shared cognitive style and the natural trouble-shooting mind, but may not be aware of some subtleties if the situation involved conflict with another person. The NT cognitive style is usually to solve the emotional aspects first, so an NT friend’s instinct may be to support the AS friend. However, the upset AS person is usually convinced that they’ve done something wrong.
In this situation, the best approach is to deconstruct the situation and look for ‘right’ and ‘wrong’ actions on both sides. Then, tell the upset AS friend what they did right, FIRST. Next, if there is anything the AS person did ‘wrong’, tell them what they might do differently for next time. Be positive — remember, for many of us, we haven’t been allowed to make mistakes and it’s really hard on our self-esteem when we screw up.
Don’t ask! If you do suspect that maybe your upset friend is having a suicide attack, don’t ask about it! They will most likely deny it and they will get even more upset. Worst of all, they will not likely turn to you again. They may even start to distance themselves from you because they no longer feel that level of trust that brought them to you in the first place.
Be patient. It may take a long time for your friend to come down safely, sometimes hours. Stay calm, keep talking. Follow their lead; if they need you to go back to talking about anything, go back to talking about anything. You are their lighthouse, guiding them out of the storm and into safe harbour. This may or may not be the time to try techniques like PMI; their minds may not be able to access that state yet. If not, reassure them that you can talk about more options later. Stay available to them.
Avoid platitudes. Understand this: Your AS friend has chosen to trust you to see them in their absolute worst — if you judge them now, if you tell them they’re over-reacting, if you tell them they’re being ridiculous, if you belittle them in any way, the damage may be irreparable. At best, it can destroy your friendship; at worst, it can destroy your friend. This is a time when they need a friend more than ever and if you let them down now…?
If they ever do admit to you that they’ve had an attack, don’t get upset and don’t say things like ‘but you have so much to live for’ and ‘suicide isn’t the answer,’ please! Yeah thanks, we know that, that’s why we reached out in the first place. Instead, greet the news positively - they’re still here, yeah? For one thing, choosing to tell you that they’ve had an attack is a huge show of their trust in you. So, tell them that you’re glad they’re still here to be your friend. Believe me, they need to hear things like that.
Stay calm. Keep talking. Be the lighthouse. Be the rock that they can cling to.
A problem I’ve noticed among a lot of #Aspies is the tendency to shut people down. This happens especially often during a debate or argument situation, but can happen in ordinary conversation as well. This grows out of the need to be right, but it can cause significant social problems, not only among NT people but among other AS people as well.
Shutting people down means countering everything they say immediately, without actually listening to what they’ve said. The other person is countered on the first statement, without being given a chance to present context, supporting evidence, or subpoints, so their entire point may be refuted before it’s even been made. Eventually, the other speaker gives up and stops talking, leading the first person to believe that they’ve “won the argument.” Nothing could be further from the truth! The other person hasn’t conceded the point, they’ve given up on trying to make theirs because they now believe that you’re not interested. Then, they tell other people “Don’t bother, he doesn’t listen.”
It must be noted that this tendency isn’t unique to AS people; many NT people also exhibit this behaviour, with similar negative social consequences. If this sounds familiar, whether you’re dealing with someone who tends to shut people down, or whether you’re guilty of this particular tendency yourself, some alternative actions may be called for. Actions that can help are the CoRT 3 tools Examine Both Sides (EBS) and Agree Disagree Irrelevant (ADI.)
Examine Both Sides means just that: Write down the points that each person in the discussion is trying to make. Writing them down is helpful for four reasons:
For you, the benefits of writing down your points include:
When writing down the other person’s points, it can be helpful to write them down in their words first, then restate them in your own words. This can help communicate whether you’re on the same page or not.
Agree, Disagree, Irrelevant gives us an alternative to the traditional “right/wrong” stance. Instead of deciding whether a person is right or wrong, or trying to make the other person agree with our position, we examine both positions and look for points both can agree on. When we find points we disagree on, we can examine them further if it’s necessary.
Very often, people (AS and NT people alike) will judge an idea emotionally first - namely, whether they like it or not. Then they build their positions based on that first emotional reaction. In building their position, they will often include points that really don’t add anything to the discussion. By breaking down both sides’ points and examining them, the irrelevant points can be recognised.
The usual way of taking a position is to state your main point first, then back it up with your evidence. If you’re dealing with someone who frequently shuts you down, you know you usually never get past the first point. It can be helpful to reverse the process: Present your evidence FIRST, then conclude with your main point. This can crack open the other person’s listening: As they wait for you to get to your point, they’re hearing information that may shift them out of their kneejerk response to refute.
Yes, these methods may take longer, but the social benefits are worth it. Both sides feel validated and heard. By focusing on finding points to agree on, rather than on being right, we do away with feeling the need to defend our position, thus reducing stress on both parties. Most importantly, neither party feels denigrated.
For many #Aspies, being right is deeply entrenched need, most often originating in its necessity to our social value. In an argument, debate or conversation, people use different ways to express why they are right - but those ways don’t always guarantee that they’re correct. Likewise, there are different ways of being wrong. The CoRT 3 lessons, “Being Right” and “Being Wrong”, gives us a lot of information that can help us to relax our need to be right.
CoRT (which stands for Cognitive Research Trust) was developed by Dr. Edward de Bono as a program for developing thinking skills. If we consider thinking is as to driving, then CoRT is as to driving lessons. The full CoRT program consists of 6 modules, each dealing with a specific theme. The theme of CoRT 3 is Interaction.
CoRT 3 describes four ways that people show that they are right: Show, Refer, Name, and Judge.
Show: People prove that they are right by demonstrating their position. One may try to show the implications, or try to show what would happen. One may try to show that an idea is wrong by examining only its flaws, or show that an idea is right by examining only its virtues. One may show proof with diagrams or photographic evidence.
Refer: People prove that they are right by backing themselves up with the agreement of others. One may refer to experts or publications. One may refer to personal experiences. One may refer to the experiences of others. One may refer to facts.
Name: People may prove that they’re right by attaching a label with a pre-agreed meaning (usually negative, but not always) to the situation. “That’s abusive.” “That’s racist.” “What do you expect a woman to say?” The meaning of the statement is used to support their position.
Judge: People may prove that they’re right by using words with pre-agreed values that are difficult to disagree with. “That’s stupid.” “That’s not normal.” “That’s clever.” “That’s proper.” They may use the words to define their position as well as to support it.
These are the ways in which people demonstrate that they’re right, but are they necessarily correct? Experts can be wrong (such as the expert who states that people with Aspergers lack empathy, a claim which has been disproven many, many times), judgements can be narrow or reflective only of point-of-view, even facts can be later determined to be incorrect. Just as there are four ways of being right, there are also four ways of being wrong: Mistake, Miss Out, Prejudice, and Exaggerate.
Mistake: People make mistakes. One may have outdated information and be unaware that it has since been disproven. One may misremember something (eg, the speed limit is 50 km/hr, when it was actually 60 km/hr.) One may mistake identity (that’s not a hamster, it’s a ratty.) One may misinterpret another person’s statements.
Miss Out: People may not have all of the information. One may be checking one’s blind spot and miss the speed limit sign. One may omit information (banning trucks from city centre to reduce noise, congestion and pollution, and forgetting about supply deliveries for businesses.)
Exaggerate: People stretch the facts or the perceived consequences. One may take an otherwise logical conclusion to an illogical extreme. One may make false generalisations (“My son with Aspergers breezed through university, so people just aren’t applying themselves.”)
Prejudice: People may have fixed ideas that they refuse to let go of. One may believe that one’s own point of view is the right one, so only people who agree with it are right. One may believe that the other person is flawed and therefore always wrong. One may hold a generalised fixed idea about a population (“People with disabilities are incapable.” “People with Aspergers can’t have normal lives.” “Gay men are all style divas.”)
Obviously, being right and being wrong aren’t as simple as they seem, and even when we think we’re right, we may yet be proven wrong - The chances of us being wrong are pretty darned high! But if we can re-learn to see being wrong as an opportunity to gain more knowledge, we can see how the CoRT lessons can help us grow. We can use them to dissect our own arguments and gain insight into our own weaknesses. We can dissect the arguments of others and assess better whether it’s worth getting further into the discussion to begin with.
For example, if we identify that a person’s position is made up only of prejudice and naming, we may decide it’s not worth giving ourselves the stress of trying to prove our own position. We may choose to give up our need to be right in favour of avoiding a meltdown. On the other hand, if a mistake is being taught in our CPR course, we may choose to brave the stress of challenging the teacher, for the benefit of the class. The CoRT 3 lessons “Being Right” and “Being Wrong” help us to choose our battles with better precision.
I’m watching “Canada’s Greatest Know It All”, or as I call it, the “Spot the #Aspies” show ^_~ It’s not a surprise that many (but not all) of the contestants on a know-it-all competition would present with traits consistent with #Asperger’s Syndrome, given the AS thirst for learning. Nor is it a surprise that the atmosphere quickly becomes prickly.
I’ve seen this happen any time I’ve been in a large gathering of AS people: The atmosphere becomes tense and competitive and hackles rise quickly. It’s pretty simple: We’re used to being the smartest person in the room and the person with the most encyclopedic knowledge. We’re used to being the go-to person whenever anybody wants a definition or an explanation of something or to get their software to work. Our lives are typically defined by ostracism and bullying, so our value has been defined by our knowledge. That’s one of the reasons why we love sharing it: That’s where our social worth has typically lain.
AS people are used to other people not having the sheer breadth of knowledge that we do, so we can toss out facts and corrections without much fear. But other AS people DO have a similar breadth of knowledge and not all of it is on the table at a given time. So when an AS person corrects or challenges them on something they already know, they may find it offensive and then, they go on the defensive. If they’ve been challenged on something they didn’t know or were mistaken on, they may feel like the other person thinks that they’re stupid. In both cases, hackles rise. This is because an Aspie social barrier has been breached.
There’s a lottttt of emphasis placed on AS people learning to socialise with NTs, but what about other Aspies? As noted in my previous posts on behaviour homonyms, empathy, conversation pinball, etc., the native etiquette of AS people has some significant differences from those of NTs. One of them is “Thou shalt not harsh my knowledge buzz!”
Remember, our social worth has been defined by our value as the go-to person; our breadth of knowledge is essential to that value. When we thoughtlessly challenge each other’s knowledge, we’re challenging each other’s worth.
There’s a really simple way out of this and it came from one of the AS participants at our Aspergers workshops: Every time he wanted to challenge or correct something that someone said, he began with “Did you know…?”
“Did you know…?” It’s a simple preface but it makes a huge difference. It allows for the possibility that the other person does know, but has not put that knowledge on the table for whatever reasons. For the person who does know, it gives them the opportunity to say so without going on the defensive. For the person who doesn’t know, or who has mistaken or incomplete knowledge, it gives them the opportunity to seek more information without feeling like they’re being treated as stupid. For most AS people, that’s *really* important. Remember, most of us share a background of being bullied and ostracised and told that we do everything the wrong way — the only time we’ve gained approval is when someone needs our knowledge. Our self-worth can be very fragile and may be camouflaged by a veneer of ego (usually developed from years of being told to “get some confidence!” without ever being explained how to do that) so everything we can do to help each other maintain face and keep that self-worth intact is important. “Did you know…?” is a very simple, yet effective, way to do that.
It also works with NT people. If people complain that you’re too blunt with your corrections and challenges, try using “Did you know…?” and see if it comes across more to their liking.
Next, I’ll talk about another fall-out issue of AS social background, the need to be right, and how the CoRT 3 tools can help us.
Stuff happens in this world, but as anyone in a relationship with an #Aspie knows, we react to it differently. How our partner reacts to our reaction can escalate it or engage our gifts. Lately, I’ve been finding that the CoRT 1 tool, PMI, can help shift that reaction to the productive side.
PMI stands for “Plus, Minus, Interesting.” It was developed by Dr. Edward de Bono and is one of the thinking operations in the CoRT 1 module. When we meet a new idea, we can run a PMI on it, first listing all of the positive attributes we can come up with, then all of the negatives. Then we can think about the interesting possibilities offered by the idea. In this way, we don’t immediately judge the idea as worthy or unworthy, nor do we immediately decide whether we like or dislike it. By exploring the idea in this manner, we may find aspects of it that are worth further consideration.
When a negative unexpected situation occurs (such as news of impending job loss), it may trigger an AS person’s anxiety and throw it into high gear. That triggers high emotions and if we’re alexythemic, we have trouble dealing with those. We may get trapped in them and become stuck in a ruminative thought loop, running the same anxious thoughts over and over — “I should have seen it coming”, “how will I pay the bills, I’m too old to get another job”, “I’m going to flunk, I’ll never get this paper rewritten in time.” This is usually when our NT loved ones tell us we’re over-reacting or being ridiculous - not very helpful, in fact can be quite harmful.
First, give your AS loved one some time to calm down. It’s an NT’s natural response to rush after us and try to get us to talk but that only increases our anxiety. Give us our privacy and give us as long as we need to calm down — we *will* come out to talk eventually, believe me!
The natural response of an NT person is to empathise with feelings first by joining the other person in their emotions - which means the first response of an NT is to get upset right along with the other person. That helps an NT person to work through their initial emotion, but for an AS person, it just sets us off again and puts us right back to square one. What helps an NT person to work through their emotion just makes things worse for a person with AS - our brains just don’t work that way (and remember, we don’t empathise that way. We empathise by describing our experiences in similar situations.) What we need is a calm approach that pulls us out of our overwhelming emotions.
So when your AS loved one emerges from hiding, first identify the situation. Then, try a PMI. Okay, so they’ve received a lay-off notice: What are the plusses of being laid off? What are the minuses? What interesting possibilities might arise from being laid off? This approach grounds the AS person’s emotions and pulls them out of the ruminating thought loops. It directs our focus onto deconstructing the situation and looking for solutions - things our brains are good at. By directing our minds to looking constructively at the problem, we regain our sense of control over the situation.
This approach also gives our NT loved ones a concrete way to help, something we appreciate and need. We tend to express our concern in pragmatic, concrete ways ourselves, so receiving help in a pragmatic way is very comforting to us. The NT perspective on a situation is very valuable - we were made as Aspies and NTs for a reason! And collaborative thinking is very much a bonding experience for us - we like to use our brains! We feel supported when we can think together with our loved ones.
In talking with and meeting other #Aspies, I’ve found that most of us have some degree of alexythemia. Alexythemia is the inability to identify one’s emotions with words.
This is often misunderstood as the inability to feel emotions in the first place. This is not the case: The emotions are there, they flow naturally and often very strongly but the person may be unable to put a name to them, or to describe or define nuances. It isn’t a case of “not being in touch with one’s emotions” and no amount of meditation or finger-painting with colours will change it, because it’s caused by differences in the brain.
Neuropsychologists implicate the corpus callosum and an associated region, the anterior cingulate cortex (ACC) as contributing factors in alexythemia, but exactly what roles they play is not well understood. However, these regions have roles in registering pain, anticipation of tasks, attention, and emotional control - all of which tend to be challenges for people with AS. These regions are also among those that consistently show differences from Neuro-Typical, in scans.
I noted in my previous article on Asperger’s and emotion, “The Great Stone Face”, that people with AS generally seem to experience one emotion at a time. As a person quoted in one of Tony Attwood’s books put it, “I became aware that other people felt more than one emotion at a time, and that this was normal for them.” — could’ve bowled me over with a feather when I first read that, it made so much sense! Whereas Neuro-Typical people may experience emotions as a watercolour painting, people with AS tend to experience emotions more as a book, turning pages. It may be fast, like riffling pages, or we may stay on one ‘page’ for hours, even days.
If we have alexythemia, being able to stay on one ‘page’ is great, as it may give us time to sort out exactly what that page is saying. But when our emotions start flipping pages rapidly, we can’t read the details, we might be lucky just to read the headers. And when they start happening all at once, when we get a storm of pages falling down on us? - We can’t read a darned thing. We know that emotions are happening, but we can’t tell what they are, much less what’s triggering them, and we certainly can’t figure out what to do about them. This is a problem in any confrontation situation. It’s particularly problematic in therapy, since most therapies (being developed by and for Neuro-Typicals) involve sorting out and talking about one’s feelings.
If you’ve met one person with AS, you’ve met one person with AS, and that applies to alexythemia as well. I have relatively mild alexythemia and I only run into trouble when my emotions start happening too quickly. However, I’ve met several people - some women but often men - with much more pronounced alexythemia, who were just about able to tell whether they felt ‘good’ or ‘bad.’
This isn’t unusual, particularly for males with AS. For AS males, upbringing may compound their natural alexythemic tendencies. In western society, boys are discouraged from talking about emotions and are often subjected to bullying for expressing their feelings (ask any boy who’s been called a “pussy”) As I noted in “The Great Stone Face”, it’s very difficult for people with AS to modulate our emotions; at best, they can just about be contained behind our ‘stone wall’ faces. Layer this discouragement on top of his natural alexythemia, and by the time he reaches adulthood, an AS chap may experience the storm of emotion but be completely unable to talk about his feelings in a world that increasingly expects him to do so.
So! Male or female, what’s an Aspie with alexythemia to do? Well, one young AS man I worked with was able to categorise his emotions into “little good”, “big good”, “little bad” and “big bad.” That’s a good place to start, as “feeling good” and “feeling bad” are quite acceptable descriptions to NT people.
If we assign specific meaning to our words, we may decide that “good” means ‘little good’ and “very/really good” means ‘big good.’ This way, we can keep our emotion vocabulary smaller and we can expand the vocabulary to match our ability to determine the type and intensity of our emotions. A person who might not be able to distinguish quickly between anger and fear, will know they don’t feel good, so they can say “I feel really bad about this situation.” In this way, we can design our vocabulary to match OUR needs, in a way that meets the expectations of NT society.