To visitors from Autism and Empathy.
Feel free to say hi in the comments…
To visitors from Autism and Empathy.
Feel free to say hi in the comments…
On the first of August this year I will have been in the workforce for exactly twenty years, nearly all of it full time. I have worked in five different countries. I have moved between the southern and northern hemispheres eight times (not counting episodes less than six months).
When I was at university, they talked a lot about mentors. A mentor helped you, offered guidance and support. I would read about mentors in the newspaper. People who had got ahead in business usually thanked one or more mentors. A new novelist would thank several well-known writers in their foreword.
Once I started work, I generally got on with my seniors. Somehow, though, it was always someone else they looked out for, always someone else they pushed ahead. I worked harder, stayed later, took on more, but nothing made a difference. No one seemed to have any criticisms of me, so it was hard to figure out what to improve. But I was never quite part of the team.
One of the realities of professional life is the constant round of exams, of form-filling, of box-ticking. Filling in my paperwork was always less important than completing everyone else’s. My emails would go unanswered, or be ‘lost’. Promises of assistance battling officialdom were made and then broken.
If you ever wonder why intelligent, capable auties don’t have successful careers, this is why. We don’t know how to cultivate the people who can help us. Even if we did, our essential weirdness means we are always at the bottom of the list when help is offered. Mentors help people like themselves, who are outgoing and sociable, who make eye contact, who know how to keep a conversation going. They prefer their mentee to have a normal life – that is, a partner, a mortgage and all the associated trappings.
However good you are at passing, it is pretty much impossible to maintain if you are employed long-term in one place. I don’t have any clever answers, except that auties should look out for other auties, in just the way NTs do. But it seems to me to be a huge waste of skill if we can’t succeed simply because those who could help us instead put us in the basket labelled weird.
Sound is one of the most troubling of my autie senses; if noise becomes too intense and continuous, like a vacuum cleaner or high winds, my brain converts it into a more comprehensible sound like a choir all singing the same note, or a string orchestra tuning. That probably sounds completely weird, but I can’t describe it any better. Anyway, it makes listening to music a bit challenging.
This, however, uses the kind of visuals that keep my brain on track. And it’s fun!
While link hopping this morning I found this, which looks like the start of an interesting series.
I hope that this blog series will provide an open and visible space in which to confront the erasure of autistic sexuality, particularly of queer sexuality, to interrogate the intersection of autism and gender performance, and to nudge these discussions toward the mainstream.
I’ve written a piece for this competition. The theme is ‘splendid isolation’ with a health/medical slant.
It’s around 1400 words, and I’d value comments. If you could help, leave a contact in the comments, or email me at [tielserrath] at [gmail.com]
I admit was a bit anxious about going to see this film, especially the American version.
It’s a story of fear, of violence, of being trapped and at the mercy of someone else, and I didn’t want to see such a story given a Hollywood gloss. Too often this kind of story is treated as little more than torture porn – the opportunity to show young women’s bodies as victims, in a way that is just as exposed and sexualised as porn, but without the actual sex.
My fears were ungrounded. Production values were obviously high – there is no way anyone could mistake this for an indie – but the story was handled well, even if Larssen’s densely-packed novel was streamlined for the screen. If you’ve seen the film and wonder whether it’s worth reading the book, I would say undoubtedly yes. There is vastly more story in the original.
Of course, this being an autie blog, I’m obliged to comment on Salander.
(not the American version)
As I was watching, this highlighted one of the issues I have run across in my working life. Lots of people have rushed to label her as one of us. And maybe she was written that way. But when you emerge from a childhood of abuse, knowing people are not to be trusted, it’s likely you’ll share some behaviours with autistic people. Poor eye-contact, social isolation, food issues, intellectual underperformance, all can arise from consistent betrayal of trust and a lack of autonomy.
I’m also aware that many of these people are autistic.
I continue to be surprised (though my cynical side says I shouldn’t be) of how psychiatrists rush to apply labels to acutely distressed people. Some, like PTSD, anxiety, depression, are fine – they are describing a response to life events. But others – bipolar, schizophrenia, personality disorder – are not. Severe stress can cause dissociation, retreat into bizarre rituals, self-harm, hallucinations… the list is a long one.
Personally, when stressed, I am aware that many labels could be applied to me. It is only my knowledge of the system, and experience with the attitude of many medical specialities (summed up by ‘when you have a hammer, everything looks like a nail’) that has enabled me to avoid this happening. But for people without this privilege, trapped in a system whose main intent is to get them to conform to normality, with no-one to advocate on their behalf, it is a nightmare. It ranges from expert, appropriate help to the kind of abuse portrayed in The Girl with the Dragon Tattoo.
I suppose this is bothering me a lot at the moment because in the last few months I have come into contact with a number of young women who have spent most of their teens/twenties being dismissed, mislabelled with various diagnoses, involuntarily admitted to psychiatric units and so on. Women who are not listened to, who have no one to advocate for them within the system. Women who try desperately hard, who get to college and university, who get jobs, only to be thrown out when they fail to integrate with ‘normal’ people.
Women who stim, who rock, who dissociate, who can’t look anyone in the face. Women who can’t read body language and are at terrible risk, women whose only friend is a cat, women for whom the world is incomprehensible.
And it makes me feel very helpless. I can act on an individual level. When someone comes to see me as their doctor I can start untangling the mess, start advocating, provide a safe space for them to be listened to. And I know that this is better than doing nothing.
But the sheer scale of this issue overwhelms me. And I know what we need is something better. Something run by auties, for auties. Refuges and safe houses for distressed young people, whose families can’t or won’t understand them. Space for them to deal with a diagnosis, to ask questions, to protect them from the damaging opinions of researchers, quacks and clueless NTs. A central point that describes and expands on all the sensory, social and other attributes, written from an autistic perspective.
If we are to call ourselves a community, this is part of what that means.
My new job, though ostensibly ‘easier’, is leaving me more exhausted every evening by an order of magnitude compared to the last one. So I’ve been feeling guilty about not posting more.
The NICE issue is still under investigation; more on that soon, I hope.
Meanwhile, for your edification, have a look at this and follow the link to the site. These are just amazing:
A mother speaks:
‘She’s not as bright as her brothers.’ (laughs) ‘Her IQ is XX. She’ll never be a Rhodes Scholar.’
Said in front of a 14 year old autistic girl.
This is one of the objections I have to IQ testing being part of the assessment of autistic children. Apart from the well-recognised fact that IQ testing in autistics is notoriously unreliable (I’m pretty good at doing tests, and yet there is a 15-point difference in my scores on the ones I’ve done), and autistics generally score much lower than their actual ability, telling the parents and child that they are ‘well below average’ is going to have an enormous effect on the child’s perception of themselves and their abilities.
How could it not?
If we take as fairly well-established that for the vast majority of those on the spectrum, simply getting through life is a high stress, high anxiety experience, with constant battering of self-esteem, how is telling a child that a (notoriously unreliable) test has just labelled them as well below average going to do anything but worsen their social and academic performance? So much of achievement is about confidence, both in interpersonal relationships with those who can help you succeed, such as teachers, employers and mentors, and in not letting anxiety affect performance in tests and exams.
[An aside – I have become exam-phobic over the years, failing exams more often than I care to remember. But the last one I took, although vital to my career, a) was free, and b) three attempts were allowed per year. I decided to simply give it a go, without revising or worrying, just to find out how high the bar was set. I came second in the entire region. An object lesson in anxiety destroying performance.]
And if, as here, the parent is going to treat it as an unassailable fact, to be openly discussed along with reminders that the child will never achieve anything worthwhile, there is a double effect. Both at home and at school self-esteem is battered into the ground.
Anyone who thinks “Oh, it’s only one test, it’s all right as long as you praise them in other areas” has no idea of how something like this can eat away at a teen or preteen’s confidence. It is a uniquely vulnerable time. And in the eyes of the general population IQ testing is viewed as both accurate and immutable, a predictor of every type of life success. In this particular instance, the mother had no idea of any of the issues with using IQ as a predictor in autism. She had simply accepted it as fact, and was happy to use it to openly disparage her daughter’s future abilities.
In this age of open disclosure, it is hard to argue for witholding information. But apart from making a child eligible for school support, what, exactly are the advantages of giving parents this number? It is likely to be inaccurate, it is likely to be misused, and it is extremely likely to be damaging. It harks back to that darkness in every human being – I may be stupid, but at least I’m not as stupid as her – and invites more negative comparisons.
I think we need to be clear, as a community, that IQ testing is neither welcome nor relevant, and make sure that all young autistics hear this message early on.
*identifying details have been altered*
I just had a look at the list of stakeholder organisations for the UK National Institute of Clinical Excellence (NICE) forthcoming guideline on autism in adults.
Two facts for the uninitiated:
This guideline will be rolled out as the primary reference for all doctors in England, Wales and Northern Ireland. Assuming there is no equivalent Scottish guideline, it will be used in Scotland as well.
NICE is the foremost organisation guiding doctor decision-making in England, and its decisions and rationalisations are taken seriously in many other countries.
So you’d expect them to be fairly particular about the credentials of their stakeholders, wouldn’t you?
So on the list there’s this shower:
“The Energy Therapy Net recognises a number of therapies. Such regognision [sic] is given in good faith and should not be taken to imply that either the Net or any of its officers warrants or accepts any responsibility for the quality of the therapy or training provided. Nor do they accept responsibility for the possible consequences of the use of that therapy. Certification from Calamus Universiy and the AAMET is accepted as soon as the relevant trainer informs the Net of the therapists practitioner level certificate, as is certification issued under the therapies shown opposite To see further information about these therapies click on their names in the box to the left”
“Meridian tapping therapies are a simple combination of “tapping” or “stimulating” specific points with our fingers, whilst using verbal statements describing the problem. EFT was based on the premise that “The cause of all negative emotion is a disruption in the bodys” energy system”. Imbalances in the bodys”energy system have profound effects on the personal psychology and health and when tapping is applied to certain points on the meridian lines, the imbalances are generally corrected. Our bodies all have an electrical or energy system. Albert Einstein told us back in the 1920”s that everything is composed of energy, including our bodies. This energy system is as vital to us as our other bodily systems. Therefore a balanced system can start to heal itself.”
Where to start?
Well, first, invoking Einstein in order to sound sciency and give your nonsense a veneer of respectability does not a genuine, demonstrably successful therapy make. And if you’re going to use the word energy in this way, you really have to demonstrate an understanding of it. Energy is not some ‘thing’ that can be moved hither and yon, interrupted and restored. Energy is simply a descriptor for the amount of work required to get from point A to point B, whether that point be one end of of a chemical equation to another, or the bottom of a slope to the top. It is the movement of electrons, or molecules, in a scientifically measurable way, to achieve a result.
And I’m sorry, but there is enough utter nonsense being thrown around as a cause of, or a cure for, autism. Autistic children are suffering and dying (see chelation therapy), millions of dollars/pounds are being wasted, and pocketed by conniving scamsters and well-meaning but utterly gullible fools, who avoid asking themselves the hard questions because they know how paper-thin their justifications will turn out to be.
And that this organisation of snake oil merchants has weaselled itself onto the stakeholder list of NICE leaves me with a strong desire to weep. What have we come to, that a group like this, peddling such total, unbelievable tosh, is treated as a serious organisation, and listed with (for example):
Royal College of Anaesthetists
Royal College of General Practitioners
Royal College of General Practitioners Wales
Royal College of Midwives
Royal College of Nursing
Royal College of Obstetricians and Gynaecologists
Royal College of Paediatrics and Child Health
Royal College of Pathologists
Royal College of Physicians London
Royal College of Psychiatrists
Royal College of Psychiatrists in Scotland
Royal College of Psychiatrists in Wales
Royal College of Radiologists
Royal College of Speech and Language Therapists
Royal College of Surgeons of England
Royal Pharmaceutical Society of Great Britain
Royal Society of Medicine
Autistic people don’t need matrix therapy, or energy realignment, or homeopathy, or craniosacral therapy, or chiropractic, or naturopathy, or crystals, or faith healing, or whatever your babble of the day happens to be.
What we need is straightforward, and can be summed up in one sentence. Everything else would flow from that one change.
What we need is a society that accepts difference.
[Hey, I found these people on the list: London Autistic Rights Movement. Worth a look!]
An occasional post on ways I’ve tried to convince myself I’m normal (and failed).
How old were you before you learned to tell the time?
I was thirteen. It was a source of enormous embarrassment to me, and had digital watches been invented earlier, I’d probably have switched to one of them and never bothered to learn the other way.
Even now I cannot explain what was so hard. My brain simply wouldn’t take it in; I couldn’t remember which hand was for which bit, and how could they both point at the same thing and mean something? A complete mystery.
Telling the time was important at school. The class of nine-year-olds was the one that had the responsibility of ringing the bell that ended each lesson. I loved that bell. It was huge, golden bronze and shiny, and I could tell that standing in the playground, setting free that commanding sound, made you feel like the most important person in the school.
Except you were only allowed to ring the bell if you passed the test that showed you could tell the time.
And so, week after week I watched one person after another ring that beautiful bell, until everyone in the class except me had done so.
Several years later, in a school where the bell was a nasty electronic thing, set off by a timer, I finally learned to tell the time. I don’t know how I managed it, or even exactly when it happened. I started wearing a watch (a digital one!), and I could read the clock on the classroom wall, too. But there was no sense of victory, just a creeping shame that it had taken so long, embarrassment at all the tricks I had used to hide my inability.
I only remembered it recently, when I was out bush with friends, and none of us were wearing a watch. A small competition ensued, to see who could most closely predict the correct time. Eventually an ipod was produced, to verify the winner.
It was me. The others were wrong by nearly an hour each way.
And I felt no sense of surprise, because I’ve had an accurate time-sense for years. It was only later, when I tried to figure out how it had started, that I remembered all of this. I had to know the time, because I couldn’t read it. I had to be able to estimate how long it was since the last moment associated with a known time, and calculate forward. I had to know each day when it got light, and when the sun set. How long it took to drive to school, and how long the bus journey home. Every one was a point in the day from which I could calculate forward or back.
So many things I had done to conceal my failure. And I wonder now, was it autism? I was certainly smart enough that I should have been able to manage it, and yet I couldn’t. So I throw the question out there – does anyone else recognise this?