What a great and thoughtful post. Love the journey…
photo by Stu Allsopp
Some autistics prefer person first language (though many sources suggest this is a significant minority), and some individuals and organisations use both person first and identity first language in an effort to compromise. I believe the latter is unhelpful in tackling stigma, while an insistence on person first language unwittingly perpetuates it.
This post takes as read the equal value of all human life in its infinite diversity, and the neurologically driven right to self-expression for us all. I won’t use functioning labels or talk about co-morbid conditions associated with but distinct from autism.
Autism is understood as a viable neurological difference with a distinct culture. Our contributions to the mainstream are significant but often overlooked. We face prejudice and barriers to access at all levels of social engagement and opportunity.
Blogging about autism sometimes feels like being suspended above a battleground on a…
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Woo hoo! World Autism Awareness Week is now officially underway. It goes from today till the 2nd of April, whereupon Autism Awareness Month picks up and rolls on through the month of April.
So, yeah, big trigger warning for lots of us.
A lot of folks say that we don’t need autism awareness, we need autism acceptance. I think we need both. People outside the neurodiversity community are so woefully behind the times, so vexed and misled by inaccurate, flawed, harmful, dangerous information about this “epidemic”… I’m fine with all the awareness we can get.
‘Cause we’re not there yet.
Not even close.
There’s always that talk about how autism is a source of suffering, and I’d just like to say a few things about that. Autism is NOT a source of suffering. Our environment is — sensory and social.
The obnoxious scents. The random touching. The awful lighting. The blaring music. The non-food that we’re fed, including all the antibiotics and hormones that screw up our sensitive systems. The artificial unreality that passes for “standard” just stresses us out on every level, kicking off allergic reactions and stress responses that crowd out the social cues we’re supposed to just magically pick up without any effort on our part.
And then there’s the logistics of just getting through the day in a world that congratulates itself on multi-tasking, loudness, chaos (apparently, it’s inspirational for non-autistic people?), constant activity without reflection, arbitrary rules of engagement that favor liars and cheats and self-absorbed “takers”… All of the above is the problem. Not my neurotype.
So, quit blaming autism for my (and your) issues. Autism isn’t the “culprit”.
It’s not just a non-autistic world, it’s the entitlement, the privilege, the assumptions, the enforcement of ways of being that are innately foreign — even harmful — to us, as well as to everyone else. Think the neurotypical world’s standards are a great idea? How’s that working out for everyone? Just look at who/what is in power in the USA and UK. Just look at how things are turning. Just look at the oceans, choked with plastics and killing off deep-sea creatures before we even have a chance to realize they exist.
Autistic folks are like canaries in the coal mine. We’re ultra-sensitive, and we pick up on what’s going on. Just like the hapless birds in cages that coal miners used to lower into mine shafts, to make sure there wasn’t too much gas that would kill them, we’re sensitive to what others cannot detect. And it hurts us, even kills us, when we’re kept in it too long.
If the canary died, it didn’t mean the bird was defective. Oh, sure, I’m certain that was the case, every now and then. But the assumption was NOT that the bird was too weak or too deficient or too weird to make it in the mine shaft. It was a clear indicator that something was wrong. And it wasn’t safe for the miners to descend. All those canaries. Poor things.
Likewise, if an autistic child or adult is struggling with their issues — stimming, rocking, having trouble socially and logistically, under constant sensory overload — let’s apply the same standards. It’s not the autist who’s got a problem. It’s the world in which they’re forced to live and operate… expected to function, as though everything were just fine.
I’ve said it before, and I’ll say it again, autism is NOT the symptoms. It’s a distinct neurotype, which responds to environmental hostilities with symptoms. Let’s not confuse the symptoms for the neurotype. I know the vast majority of folks do, but maybe, just maybe, we can inject a little more awareness around that into the general populace.
It would be a start.
Have a good week… and ensuing month, everyone.
Stay safe out there.
Recently I have received feedback from a number of sources suggesting that I need to be careful when listening to autistic people, and integrating their perspectives into my research agenda. The implication is often that I would be better off if I didn’t talk to autistic people quite as much as I do.
This has been pretty challenging for me. I obviously don’t always (often? ever?) get it right, but working alongside autistic people, trying to ensure that the research I do aligns with their priorities, is absolutely a matter of principle for me. You can see examples of that in the Shaping Autism Research seminar series, in which I was proud to take part, and my personal mentoring relationship with Kabie Brook.
At the same time, I deeply respect, and am personally fond of, many of the people who are telling me I need to watch my step in relation to asking autistic people what they think. These people are all doing high quality research and are super brainy. More than that, I have no doubt that they care greatly about making a difference in the lives of people on the autism spectrum, and their families. So why the reluctance to ask #actuallyautistic folks what they think?
Read the rest of this great piece at: Autistic voices, and the problem of the “vocal minority” | DART
I’ve been reading up on alexithymia – inability to identify and describe emotions in the self. There appears to be a number of possible explanations for causes, which seems to be a bit of a mystery. Research suggests a brain-based source of the issue, with reduced connectivity and blood flow correlating with alexithymia. Additionally, the condition has been characterized as “an extremely arrested and infantile psychic structure”. Hm. Not sure how I feel about that.
I think we need a better way of understanding alexithymia — especially from the viewpoint of those affected. Just because we can’t think of ways to describe what we’re feeling in the moment, doesn’t mean we can’t put words to it later, when we’ve had a chance to think about it. This seems like a worthy exercise, since the neurotypical world deals widely in “emotional currency” — relying on emotion to orient individuals to one another, determine priorities, and measure success of interactions. Alexithymia combined with autism (which can already complicate matters with sensory overload and difficulty reading faces and social cues) can negatively impact an autistic individual in significant ways.
In times of stress, it can complicate sensitive social interactions with peers, medical personnel, mental health clinicians, and other influential figures who may misinterpret unexpected emotional responses as a threat – or a sign of dangerous pathology. This can put alexithymic individuals at risk for missed cues about pressing needs, or inappropriate treatments and medication, which may actually prevent effective emotional processing, and ironically make matters even worse.
Now, alexithymia has been studied for 40 years “from a distance” by researchers who do not experience it themselves, leading to attempts to categorize it along psychiatric lines (see Moorman, et al Emotion Regulation pp 27-42). Five different types have been proposed, centering around emotionality, fantasy life, and cognition. These categories are psychiatric in nature.
In addition to this approach, I think it’s also beneficial to understand alexithymia from the “inside-out”. Studying this cognitive/emotional/behavioral phenomenon from the viewpoint of the alexithymic individual could yield useful information, which not only allows the individual to better understand the nature of their situation, but may also help clinicians and other helpers find complementary / alternative means to communicate in situations where successful social interaction is critical.
To follow are some proposed descriptive sub-types (or categories, if you will) of alexithymia, which identify the nature of the communication issues and also indicate potential remedial approaches.
1. Lexical Deficit Alexithymia – (Shortage of good word choices) When words available do not adequately suffice to describe one’s feelings. This indicates insufficient vocabulary choices (a failing on the side of available terminology) rather than the individual’s inability to think of the right word. The right word for what they’re feeling may not even exist. Or it may not be well-known.
2. Hypervarithymic Alexithymia – (Hyper-variable absence of emotional sense) When emotions are overwhelming and changing too quickly for the individual to summarize what they’re feeling in the moment. The intensity is matched by the speed with which they change, which doesn’t lend itself to quick articulation.
3. Corporeal Alexithymia – (Bodily sensation competition for feeling senses) When physical sensations (including sensory overload) are so intense that they mix with emotions and obscure the true nature of the experience. Intrusions of noise, light, balance problems, taste, touch, can all distract from deciphering what’s going on in your emotions.
4. Temporathymia – (Time-lag absence of emotion processing) When there is a cognitive processing time lapse between when an impression is made… and the individual is able to sort out what emotions are being experienced… and then figures out how to describe them. It’s not that the words aren’t there – the emotions haven’t coalesced sufficiently to describe them.
5. Perceived Exathymic Alexithymia – (Exterior lack of emotional potential – It looks like they won’t understand you) When the emoting individual does not perceive or believe in the ability of others to fully comprehend the emotions they are trying to express and is therefore reluctant or refuses to communicate their experience, to avoid embarrassment or further confusion.
6. Endathymic Alexithymia – (Interior absence of emotion – Yeah… I’ve got nothing to share…) When the individual does not feel anything inside themself, either physically or emotionally, and there is literally nothing in their experience for them to describe. The feelings may come in a little bit, and they may have words put to them, eventually, but “in the moment”, nothing is there to even detect.
1. Lexical Deficit Alexithymia – Develop a lexicon that more fully describes complex combinations of emotion we actually feel. We frankly need more and better ways of describing our emotions, than the standard handful, or interspersing our sentences with “like”. There are new projects underway to do this – e.g., The Dictionary of Obscure Sorrows. We also need to use old words that have fallen out of use.
By enlarging our vocabulary and actively finding ways to put into words what it is we autistic folks are feeling (can also be through art and music), we might possibly dispel the misconception that we feel nothing, and that we can’t describe what we’re feeling because we’re internally deficient.
2. Hypervarithymic Alexithymia – Neurotypical people need to realize that this happens. Our emotional state can be so hyper, so variable, so overwhelming… and our processing speed can be significantly slower than the “norm”… that putting words to what we really feel can be all but impossible. Especially when we’re “put on the spot” and feeling the pressure to perform in ways that make sense to NT folks. The autistic internal world can be so much more vibrant and mutable than the allistic counterpart, and that variation needs to be taken into consideration.
Just understanding that this is the case with us, and not pressuring us to come up with an instant summary of our basic state, would be a step in the right direction. Also, I find body movements are helpful — waving of hands to illustrate the wild flow of information coursing through my system. And drawing. Perhaps some non-verbal approaches would help.
3. Corporeal Alexithymia – Sensory overwhelm is an issue for me, in most cases, alexithymia or not. Stress heightens sensory overwhelm. So, reducing stress, as well as learning how to identify the sensory factors coming into play, can be helpful. If I know that the overhead lights are bothering me, I can ask that they be turned off, and then it’s easier for me to think. In fact, turning off overhead lights can turn me into a completely different-presenting sort of person. It’s interesting to watch, from my own perspective. Doing things like wearing sunglasses or earplugs, wearing clothing without tags or scratchy interior seams, also goes a long way towards that.
For me, just knowing that my sensory issues are “spilling over” into my emotional processing is helpful. I can explain that to others, even if it doesn’t make sense to them… and/or I can stall for time with an explanation that “I’m still thinking”, while I collect myself.
4. Temporathymia – Because it takes time to sort through everything. The temporal aspects of the absence of emotion (that’s ‘-athymia’) can be confounding, especially in frenzied emotional circumstances. When I’m put on the spot by someone who wants to know right now what I’m thinking, I pause and say, “Well, it’s complicated. I’m not sure there’s an easy answer to that.” And they often back off, because they don’t want to hear a lengthy, detailed explanation… even if it’s far more accurate than what they’re expressing. The main thing, with me, is letting people know that it takes time to sort things out… it’s complicated… there’s a lot to consider. I’m a grown-up with a lot of life experience, so I have a lot of points to reference. NT people tend to accept that, whereas no explanation — just a blank stare — doesn’t play so well with them.
5. Perceived Exathymic Alexithymia – Why bother, if others aren’t going to get it? To the point above, telling someone, “It’s complicated. There’s no easy answer.” gets them to back down. Who has the time or the patience for my detailed explanations? Not many people. And telling them they’re going to get an earful, gives them the chance to withdraw their incessant demands for emotional processing from me.
6. Endathymic Alexithymia – Sometimes, there’s just nothing there. This especially happens when I’m tired, very stressed, or completely caught up in thinking about something engaging. If I’m locked onto one of my Compelling Subjects of Study (I like that better than “special interests”), I won’t feel anything — physical or emotional. I’m just thinking. Thinking hard. It takes me a while to shift my attention to my body and emotions. That’s usually about the time I realize I really need to empty my bladder.
So, while alexithymia may be brain-based, in my lived experience, it’s also a problem of not having adequate words to describe what we’re feeling at a given point in time. Either available words are too simplistic, or our feeling state is so intense and so variable, mutable, that we can’t come up with words quickly enough to describe them. Or we don’t think that others will understand, so we don’t even try. At least, I don’t. And then there’s the time factor. My processing speed is slow, whether I like it or not — especially if I’m shifting gears between different thought patterns.
Perhaps the problem of alexithymia isn’t entirely with us, or our brains.
Maybe, just maybe, it’s the world we live in, that’s deficient.
This is timely 🙂
“Oh but Jeanette, don’t say you’re Autistic. You could pass for normal”.
“Do you live at home with your mummy?”
“I taught a kid with Autism….’ (proceeds to tell me how they physically pushed said Autistic student’s chin up to force him to make eye contact and thought that was perfectly OK even when challenged)
“That is so ret*rded…..’ (followed by continued use of the R word over several weeks and required repeated explanation of why that word is equivalent to a horrible racial slur)
“Gee Jeanette, isn’t it good how [insert child in family with many Autistic members] is so normal.’
“Wow, you go to work. That was really nice of your employer to employ you. You are really lucky they took you on’
“Gee, your’e Autistic? I didn’t even realise anything was wrong with you.”
“You shouldn’t say you are autistic – I mean, you’re very mild.”
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This last week marked the release of Steve Silberman’s much awaited book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, as well as the publication of his Op-Ed piece in the Los Angeles Times, titled Autism Speaks needs to do a lot more listening.
In the last few days there has been a backlash from Autism Speaks, which I surmise might be because Steve Silberman more widely known and is less easily dismissed as a part of the ‘radical fringe’, and thus a bit more of a liability to their credibility.
You can catch a bit of this action (and reaction) on Ed Asner’s fb page, where he defended Autism Speaks and erroneously asserted that Silberman “… took the hyperbole of the #boycottautismspeaks group without actually researching what Autism Speaks does.”
Asner also added:
“Silberman asks readers to imagine an all white…
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