Review: Odd Girl Out

Laura James’s Odd Girl Out sparked my interest because it was a book written by a woman in her 40s diagnosed late with autism. This very much spoke to me as I am also a woman in my 40s diagnosed late with autism. Her biographical book focused on her first year after diagnosis. Having only myself been diagnosed around six months ago, I was definitely curious to see how another woman’s experience would tally with my own.

James is a trained journalist and her writing is clear and direct. I wondered initially whether the monthly chapter format of events over this critical year would be too rigid. But the writing opens out into a series of flashbacks that run alongside the main narrative, giving us key episodes from the author’s childhood, adolescence, and, importantly I feel, adult life as a working parent of four children.

laura-james

James doesn’t pull her punches. She is open about messy and painful episodes in her life and relationships. Very interesting for me was that I didn’t feel a major shift in tone or language when James revisited these raw moments. This is a subtle point perhaps, but I could relate very much to how a major loss or disappointment was told in a similar register to a meltdown at the station or a annoyance over a poorly-made cup of coffee. This observation is in no way to detract from the writing – this book really was a page turner for me and I found it hard to put down. Rather that I had the very subjective feeling that I was listening to an autistic woman telling me her story, and nodding in recognition. Sometimes, I could hear my own voice.

Woven through the narrative of a year of autistic self-discovery are many of the differences – nuanced or more extreme, that we discuss, struggle with and are fascinated by in the autistic space: Mismatches in communication within a relationship; a need for space and privacy and it’s shadow side, loneliness and a lack of support; difficulty labelling the subtle shades of emotion; watching from the sidelines and trying to fit in at work, school, and in family life; and communicating effectively with medical professionals.

Too many small details and anecdotes struck a chord with me to go into here – but one example would be where James and her husband decide to come up with weekly meal plans to overcome some of her erratic eating patterns. I couldn’t help smiling at her surprise when Googling “meal plans” as she discovered that this was what many millions of adults do without a second thought. A couple of months ago, I did exactly the same, and then proudly told bemused friends and relatives that I was going to get to grips with some of my executive function issues with the help of this – let’s be honest – extremely basic-looking tool. As for James, to me it was a revelation. These small details are valuable in showing neurotypicals exactly how a competent and accomplished woman can struggle with basic elements of self care, such as eating regular meals.

Journalists are used to fact checking, and finding experts to back up their stories, and in this James in no exception. Maybe it’s just me but I found it extremely poignant that at key points she is fact checking her own emotions and struggles with experts such as Steve Silberman, Tony Attwood, Sarah Wild and Judith Gould. As the story is framed, James goes looking for information from a neurotypical viewpoint – that of experts who write about or work with autistic people – first. Later on in the book she connects with an expert who is herself autistic, Sarah Hendrickx, who suggests James should use the internet to interact with the autistic community. She also bonds with Rachael Lucas, a fellow female autistic author. It’s hard to say whether these connections are in actual chronological order or edited to match the emerging themes – but it seems significant that as James gets closer to accepting her autistic story and identity, she begins tuning in to autistic voices to a greater extent. Experts can offer a certain kind of support and validation, but trust in one’s own lived experience and that of fellow autistics must feel closer to coming home, to approaching truths from the inside out.

What came across to me in the arc of her story was this: Laura James has told first and foremost a love story. Her love for her husband and her children shines from the pages, and ultimately she learns to love and accept  her (autistic) self, on her own terms. In addition to her own struggles, those of other autistic women and girls are also acknowledged. The tide appears to be turning, word is getting out that women and girls can be autistic, and need recognition and support. James’s book and her admirable willingness to share her experience widely via TV and newspaper interviews have, I would argue, made an important contribution here.

Whether you are on your own journey of autistic diagnosis or self realisation, or are a friend or relative looking in from the outside, I would definitely recommend this book – both as a story in its own right, and as an important complement to expert-written guides on autism.

My autism awareness/acceptance story

It seems to be a calendar, scheduled event. The spotlight is on autism.

This time last year I did not know I was autistic. This time last year I was spectacularly unaware of “autism awareness.” But I had a good reason. My previously “always on” hyper focus mode that had served me really well for a couple of months during an intense project had waned and died. I was under extreme family pressure as I found myself in a support role for three generations all simultaneously going through very serious health challenges.

My brain responded by going into a familiar fog, one I had been in before. I would stare for up to several hours at my computer screen unable to type a single word. I would screw up my face in effort to listen to troubled relatives on the phone only to collapse afterwards unable to speak, cook, or think. I sat by my child’s bedside in hospital as he went through surgery followed by unbearable pain. I was intellectually concerned but felt absolutely nothing (hovering distant panic, perhaps, through numbing mental fog.) I felt myself give in to fate, as opposed to my usual illusion of total control.

A few weeks later I sat sobbing in front of my GP. I used the words depression, not coping, and even burnout. I was trying to fit mental health labels that made sense to me onto my experience. If I was honest there was a better term for it: overwhelm. In hindsight I know that expectations had far, far exceeded capacity, and some processing departments in my brain had gone on strike. If you have ever experienced a strange, shellshocked emptiness of emotion and an almost disembodied sensation in the wake of a major shock or accident – that is what I felt. That became my normal.

Many people would struggle to cope with what I had to deal with this time last year. Many would ask for help, vent their emotions, run away, ask for time off…any number of responses. Yet these scenarios are common, I would suggest, among middle aged females caught in a caring role between elderly relatives and their own children, with the added bonus of paid work thrown in. I simply did not respond. I shut down. I became a shell. One word for it is autistic regression. Another is autistic burnout.

I have read that one aspect of autism is a tendency to bring any discussion back to one’s own lived experience. As though an empathy trap makes it impossible to see through the eyes of others. In my case it’s an attempt at integrity, and a nod to postmodernism. Surely we can only ever speak from our own experience. My own anchor point in the world is the only point I am fully qualified to speak from. That does not stop me from caring deeply about your story, about all your stories.

As with so many stories, this one is not complete. I have yet to discuss my (private) diagnosis as being on the autism spectrum with that same caring GP who listened and prescribed me antidepressants. I have yet to find the perfect solution to being the carer and also caring for myself properly to avoid serious meltdowns and shutdowns – but I am working on it.

I have yet to get everyone I love to even accept my version of the story. Some who at first listened are now backpeddling a little, as they see shades of autism in themselves or others and they are scared of the label. I believe autism is largely hereditary and let’s say it can be seen blossoming in a number of branches of my family tree. Among the least supportive have been those who have experience with the so-called “low functioning” autism community, and so deny my experience as not autistic enough. I have sympathy for their viewpoint and experience. I have also taken care that they don’t see me rocking and sobbing and speechless. Perhaps if I did they would re-evaluate.

This is what I have to offer this year. Not a fully-formed or finished piece but a work in progress. Just as it should be.

Listening

I have practiced the art of listening. It’s not the same as hearing. You drop all thoughts, open yourself. Put assumptions and your own value judgements on hold. Tune in. It’s an act of presence, and act of respect, and act of human connection.

I have listened to many peoples’ stories, since interviewing has been part of my career. I’ve also chosen activities in my free time where learning to listen to myself and others is the goal, in personal growth seminars, circles of women, and as a volunteer “listening” to new mothers.

To be clear, you don’t exactly need amazing social skills to be a listener – it’s more about self-awareness, and a lack of agenda. You can come at it from an intellectual perspective or from a spiritual one, it doesn’t matter. In simplistic terms, an absence or suspension of ego can help.

This is a role. This is also part of my mask. I am a listener, I ask people to tell me their stories, and then I validate them, by mirroring them back, sometimes in slightly different words. This can be a profound connection – or as simplistic as answering the questions on a French listening exam deploying basic comprehension skills.

Playing ‘listener’ is a format that I understand and which I can use to feel comfortable in social situations. It is also sometimes fascinating to observe (ego on hold) that in some cases I have, with gentle prompting, kept someone talking about themselves for so many hours that as I left, I noted that they knew almost nothing about me.

I had given very little away, and I was happy about that.

Most people love talking about themselves. Because I ask questions mirroring their answers, they can be surprised by the depths we cover. Some of them leave having learned something about themselves. I have had feedback about this – people say they value our conversations, or they “had never seen it that way before.”

You don’t have to “see” me, to reflect.

Therapy

But how does it feel when you look into the mirror and see an altered image? Have you ever been to see a counsellor and had that jarring experience where the counsellor insists on asking about something or steering the conversation into a dry, empty area, parched of material?

As you say so, they light up, thinking they have struck gold because you must be hiding something! But no. As an autistic, I am just conveying information. I don’t want to waste appointment time on something that has never been a problem, or which has been, but which I feel I’ve unpacked sufficiently already. In my case, since my listening skills are quite honed, I perceive that in fact they are projecting, this is one of their own pet topics or areas of self-enlightenment. I resist the temptation to poke back with a mirroring question: “so how was your relationship with your daddy…?”

As you might have guessed, I have only done a limited amount of therapy because much of it was based on leading, and mirroring, things I am all to proficient at and usually see through. Also since I have alexithymia I never did cry at the right moment, leading one therapist to comment on my, “unusual, gentle” process and say I was incredibly self-reliant.  I was actually a raging volcano of seething emotion without the right emotional settings enabled – but on the second point she was correct.

Faux pas

Back to my original scenario…I’m in listening mode with a friend or interviewee and they bring up a topic I’m knowledgeable about, or have read something about. The filing tabs in my brain light up and start rummaging for side-topics, information, tid-bits and the latest article in New Scientist that suggests that…have you heard of epigenetics?…they have this ritual in Japan…

And so it begins to unravel. In a good mirror, they see themselves reflected. Even at the superficial, flattery level, another person’s interest in their narrative, their story, has social currency and perhaps intrinsic value. But once the listener starts to come up with theories, trajectories, anecdotes and research?

Suddenly the object becomes subject. They see that this is no ordinary mirror. In fact its mirrored glass found in all good detective shows, with a bunch of experts frowning and peering through from the other side, trying to make sense, trying to compute, analyse and extrapolate. This is more akin to the mirror in Snow White, which talks back – and you may not like what it says.

Exit

A moment ago they were giving freely, now they step back, seem confused. The spell is broken. How did we come to be talking about something so intimate or controversial anyway? (Here come the disclaimers, usually some riders about uncertainty, opinion, some others might think…) If they were due to leave, it might start to happen now.

I’m well aware that someone with more versatile social skills than me may find a way to recover the conversation at this point. I’m also aware that, even if it failed and the discussion ended, again such a skilled person might find a way, via follow up phone call, text or email, to make amends, or to make their subject forget. This is about recovering conversations (and relationships).

As a general rule, I don’t have this ability. I can’t graciously unsay things, or get “back in someone’s good books.” In the moment, once I’ve lost control of the conversation then I can’t process fast enough to attempt a recovery. Post-event, it’s likely that I know something went awry, but may have misunderstood the exact word or action that brought the house of cards tumbling down.

 

Lost in translation

Here’s another caveat. For many years, when in listening mode, I have assumed that I understood what I was hearing, that I interpreted it correctly. In the case of professional interviews, I would generally write down the person’s actual words and/or record them, and the subject was generally factual. I’m not overly concerned, then, about major errors here.

But given situations in my personal relationships, and things my partner or friends have explained to me, I am not always truly hearing them when they speak. There are emotional nuances that I don’t pick up on. There are ill-crafted words I say that could imply other, further things, leading to misunderstandings about my feelings or motivations. Sometimes I mirror back inaccurately – we may be having two parallel but significantly different conversations.

My listening skills have given me a role, and have allowed me to connect and to continue some relationships. They have helped me to stay employed, and to survive some awkward scenarios at conventions and site visits. They have given me a shot at empathy, even though on occasions, it has been empathy for my imagined version of events, not the reality being expressed to me.

I do want to connect with people, I do want to hear their stories. I am interested, I do care. It’s not just smoke and mirrors, it’s my way of being social.

Being heard

For the most part, I’ve not told my own story very well. In person, I’m likely to go off down a side-track with an anecdote, or regale you with excessive information. If I try to talk about emotion or relationships, it will rapidly become heavy, convoluted, and bogged down in my over-precise attempts to get across the nuances for which I probably don’t have the right vocabulary. My social scenario and cause for angst won’t quite add up (to many people). There will be a tonne of personal historical detail too complex to make sense of.

If I really get into my story, bluntly, honestly, told in the clean, concise way that I would like, it may be too raw to deal with. When I told my lovely NT friend about my diagnosis and mentioned in one brief sentence years of battling depression and anxiety, she was genuinely shocked to have had no idea.

Stranger in a strange land

It’s odd to discover halfway through a life that I may have listened but not heard, I may have felt along with someone erroneously, and that some of my most heartfelt words have just crumbled to dust and blown, incomprehensibly, away.

Listening, listening well, is the art of suspending the ego, and just opening to the present moment to see what arises. All that is past is story; the future is made of wishes and dread. All I can do is start over, wryly noting that the journey to know more about myself takes me right back to the beginning.

I don’t think I really understand you. Tell me about yourself…

Females with Aspergers Syndrome Checklist by Samantha Craft

A post by Samantha Craft well worth reading if you are investigating autism and Asperger’s syndrome for women & girls.

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Disclaimer: This is my opinion and based on my experience after 12 years of researching about autism and being officially diagnosed with Asperger’s Syndrome. It is not meant to replace the DS…

Source: Females with Aspergers Syndrome Checklist by Samantha Craft

A little obsessed?

This morning I caught myself looking at women’s clothing online. That’s probably not especially unusual. Perhaps what could be unusual is the fact that I had been sifting intensely through ideas, shapes, colours, even how some garments were constructed (I can knit and sew reasonably well) and adding them to various Pinterest boards and wish lists. In reality, I am unlikely to purchase or wear any of these items.

Special interests

I would not have identified myself as autistic on the basis of having special interests at first glance. If someone had asked me a few years ago about this I would have had to stretch quite hard to picture what this type of obsession or deep interest might look like, and how that person might behave. I had met plenty of people who were devoted fans of a band, or a team, or who were very keen on a particular activity or hobby. I would not have recognised that I was any different to them.

In too deep

I still don’t think that reading or other research, collections or any other keen interest are unusual or unhealthy. However, I can hardly name all the things I’ve been obsessed with (and I have chosen the word obsession mindfully) during my lifespan. Some things come around cyclically, others are  relatively short lasting from a few days to a few months and then fading away, sometimes after I have sunk in many hours of research, time and money.

My interests have often been about clothing and fabric: for example drawing women and sometimes men in specific outfits over, and over again; Knitting, and researching knitting, sometimes into the middle of the night and at the expense of other activities and interactions; buying and researching patterns and cloth, starting many projects; learning how to dye and weave my own cloth, harvesting plants to do this with. I would often manage to cook up some beautifully dyed cloth on the stove and yet would have made no dinner for myself or my family.

Obsession: an idea or thought that continually preoccupies or intrudes on a person’s mind

One of the aspects of my behaviour is that I spend a lot more time thinking about the interest than I spend actively doing it. Thinking can be active, such as searching for information online or reading patterns or instructions. It can also be repetitive, as in going over the same extensive set of patterns multiple times, doing various calculations and considering alternatives. Finally it can be going on even when I’m supposed to be concentrating on other things, such as work, household chores or even during interactions with other people.

Being a bore

I’m highly likely to go on at length about my current interest or interests, without necessarily realising that the other person is bored or that I’m not giving them a chance to speak or contribute. Again I have probably slipped under the radar with this a bit by finding other people who had similar interests and were mostly willing to listen, or were just as likely to go on about their own niche or specialised take on it. So for instance when I got obsessed with spinning wool I sought out a guild of weavers and spinners who held a monthly meeting; and when I became engrossed in running, I joined a running club.

How is this autistic?

I think there are many elements of these behaviours which, taken on their own, would be considered fairly usual, dare I say it, particularly for a man. Male stereotypes abound with blokes who disappear into their sheds with their pastimes, men who know model and serial numbers of classic cars, or are always talking about a technical detail in military history. As a woman, my interests have tended to fit more feminine or gender-neutral stereotypes. It was only when I confessed to my husband that I weighed every ball of yarn I had and then used this to calculate how many yards were left, and logged it that the lightbulb went on that this went beyond a usual level of interest.

It is the intensity and duration of a person’s interest in a particular topic, object, or collection that marks it out as an obsession.

Source: NAS

One thing I realised recently is that when I have a deadline looming or a phone call I’m dreading, I will seek to escape into one of my special interests. On the positive side, looking at images of pretty yarn is very soothing, and reduces anxiety (for me). However, while I’m looking at yarn my deadline or urgent call is getting even more pressing. There can be an internal battle over whether to just dive into the special interest, feel relaxed and forget the real world, or, unfortunately, to be an adult with bills to pay and mouths to feed who does actually need to get important tasks done, ideally without becoming terribly anxious and losing coping capacity or melting down.

Stimming

In my case stimming, or soothing, repetitive behaviour, is linked to some of my special interests. Running or swimming are repetitive and soothing, knitting is an ideal socially acceptable repetitive movement, which may incorporate the sensation of touching soft material. Sometimes I avoid doing a special interest activity because I have far to much on my plate in the “adult” world, and I try to just get on with everyday tasks. I believe there is a correlation with the fact that my anxiety levels rise considerably when I don’t allow myself time to be in the world of special interests.

Dangerous?

There is a reason that obsession is considered unhealthy. It is possible to become obsessed with other individuals, which may lead to odd or stalker-ish behaviour. It is easy to forget to eat or sleep, and to let personal hygiene or other helpful routines fall by the wayside. It is easy to damage relationships, either by being boring about an interest or by just not engaging in them and being fully present for the other person, as the interest becomes all-consuming.

In my case, I have become obsessed with exercise before, which led to an injury that I’m still dealing with. I have become obsessed with counting calories using tracking apps before. Fortunately I didn’t develop an eating disorder, just became a food bore. But some researchers are now highlighting the overlap between eating disorders and autism for this reason.

Higher level thinking

The world of special interests is a flow state, it is highly connected, it is detailed and can be both exciting and very relaxing. I often have some of my most creative ideas and solve problems (both of a personal nature and intellectual ones) when I’m in this state. I feel very fortunate to have doorways that allow me to access this state so freely and enjoy so many rich thoughts. I am also fortunate that I have friends and family who both tolerate and understand this. Now that they understand it better, they signal when I have pushed the boundaries into obsessive territory that could lead to me failing to take proper care of myself or others.

Friends

A post I relate to so much by Rhi. Thank you Rhi.

It’s hard to make friends when you’re a grown up. Plenty of neurotypicals struggle with it, it’s certainly not just autistic people who find building new friendships hard. The pro…

Source: Friends

Christmas post-mortem

Christmas day isn’t even over and here I am reflecting on it. In a quiet corner on my laptop. With the lights off. Far from other people.

This was my first Christmas knowing I had autism. I must admit I was mindful of it throughout the day. I had been mindful of it in the weeks approaching Christmas as well. I’ve realised that knowing that didn’t quite lead to perfect results – other people don’t always go along with my best laid plans, however thoughtfully I’ve made them.

The prelude

In the weeks before Christmas I explained to all key family members about my diagnosis. They were broadly supportive, with a variety of levels of understanding of how deeply this affected my life on a daily basis. One of my siblings has dabbled with questionnaires to see if they are on the spectrum themselves, another works in a medical field and is quite well informed. For my mother, it was something of a relief, giving her an understanding of my difficult childhood behaviour and later issues, and the limitations of how standard parenting could help.

Simplification

So far so good. In addition to explaining my diagnosis, I also asked bluntly for a less materialistic Christmas, with no gifts exchanged between adults and just items for the children this time (there are 5 children in the family). This was accepted by everyone but even once decided, did not quite allay various rounds of emailing, gift planning, and checking that no, in fact we really did mean that we weren’t buying adults a gift. This was a good example of how my aspie brain assumed that an agreement was an agreement, but despite the various levels of autistic traits scattered among the family, my bluntness was still not taken quite at face value. Also there have been family routines in place for several years. I guess what I did not think about was that I was proposing changing a well-worn routine. I thought this would lower the stress, but perhaps for some people the change in routine actually provoked new stresses.

Planning

Even with that taken care of and some boundaries about avoiding overly-complex visits laid down, it still falls to me to manage Christmas (I mean food planning, gifts for our own kids, wrapping, any cards, etc.). Again, I found myself conflicted. On the one hand, I wanted to do less, to give myself a break, and to make it simpler. On the other, every time I veered off my usual course and tried to modify my routines/traditions, I actually got a bit stressed.

The result is that I didn’t really give myself enough of a break, and still ended up planning a full roast meal, cakes, pies, pudding, various drinks, stockings, etc, etc. It’s one thing to think you want to change something, it’s something else to actually stick your neck out and make that change. Through choice, organising Christmas celebrations has mainly been my domain. But the results are predictable, and my partner and children do have certain expectations about how the day will go. One of my children (undiagnosed so far but almost certainly with autism) does get quite anxious about plans changing and needs a lot of warning about what’s coming up next or what we are eating. Managing stress and expectations is a complicated game.

Christmas day

No matter what I plan, I can’t control other family members. I could not have foreseen that my other half would get almost no sleep, wake up feeling a bit unwell as well as exhausted, and have very low tolerance for fitting in with plans. Them taking multiple naps at random times throughout the day derailed plans for both myself and our child mentioned above.

You may be able to imagine what happened – I rigidly followed my plan and so did my child. Both of us repeatedly bugged my exhausted spouse making requests and trying to get them back on track with our plans. Ultimately they just refused to play along, and unfortunately spent part of the day avoiding both of us deliberately because of our demanding behaviour.

I made a delicious dinner. I cleared up after the delicious dinner. Alone. Others showed up to eat it, although sick spouse took a tiny helping and complained of feeling unwell and then retreated, which rather spoiled the vibe.

Finally after some hiding in private (and I admit it, sobbing with frustration) I took the children to a planned short visit with some relatives. Spouse stayed behind and worked. Yep, worked. The visit to relatives went quite well and did not go on for that long, but it was a bit hectic and by the time I said goodbye and drove home I was buzzing and my ears were ringing. Driving in the dark is not one of my strong suits and it took all of my concentration.

Hiding

Spouse offered me a cup of tea when I got back and he saw me siting in a side room in total darkness. I’d brought up my aspie stress levels earlier in the day…now it seemed to have sunk in the extent to which I really had gone over my safe input limits.

I’ve been reminded that:

  • To be autistic for me is largely about stress and anxiety.
  • Other people don’t always go along with my plans.
  • People don’t always appreciate just how fucking important it is to me to stick to my plans, however trivial they may seem to them.
  • I am prone to meltdowns at this time of year, it can strain my relationships.
  • Changing traditions isn’t easy – they are a form of plan. It may be easier to stick with a tiring plan than to attempt to affect change.
  • We can’t do the traditional “family” Christmas. We don’t all sit in the same room and play along together – we hide out in various corners and only come together briefly.

That’s all for now folks – I need to go and find some respite because one of my siblings and a fresh wave of young children arrive tomorrow…

Dysfunctional Neurotypical Communication?

I have been doing a fair bit of reading about autism and connecting with a great bunch of people on Twitter. For anyone wanting to meet more autistic folk and strike up a dialogue or get your questions answered I would strongly recommend searching via hashtags such as #autism #actuallyautistic #sheCantBeAutistic and so on to join the conversation.

This dialogue has sparked a lot of questions in my own mind. An issue that comes up time and again from various perspectives is that of missed communication opportunities, missed cues and misunderstandings between autistic people and others. (As a side note, this relates mainly to verbal spoken communication, and I appreciate that this is therefore only relevant to a certain section of the autistic community.)

It occurred to me that some typical aspects of autistic-style communication include bluntness, honesty, finding smalltalk unhelpful, and a need to include the correct details to enhance accuracy and understanding. It could be argued that strengths of this style are that it is direct, transparent, and fact-rich.

With the exception of a common tendency to talk at length rather than to be concise, this seems like a clear and valid communication path, which echoes positive values traditionally championed in areas such as science and journalism. It is in line with the values we are generally taught as children (social norms), which say that the right thing to do is to speak up, and to speak the truth.

Is “normal” communication dysfunctional?

And yet in practice there are other things going on in neurotypical conversation that are more complex, nuanced and (often contradicting supposed social norms) acceptable from a social point of view. Things such as: saying something in a roundabout way that omits the core point; saying one thing and meaning another; and having facial cues or body language that hints there is something different actually being expressed than the message in the words spoken. From a viewpoint of inclusion and of clear, unambiguous communication, all of these behaviours could be argued as counterproductive and confusing.

From my personal perspective this style of communication can often be summed up as “lying.” This is extremely frustrating, because having been taught the norms (rules of social engagement) as a child and attempted to follow them, the outcome is not that I win at life and at communication, but that people and situations can seem unnecessarily complicated, and, to be honest, sometimes unfair.

And so I tweeted:

Nicole Radziwill from James Madison University in Charlottesville, VA responded to my tweet and since she has knowledge of building and validating surveys has started to compile a list of queries from autistic people about what they view as problematic neurotypical behaviour in a Google Document. You can view it and add your own questions here.
I just want to be clear that this is not simply meant to be a dig at non-autistics. I have spent two decades in communication-related work, listening to people and having conversations with them, trying to connect and understand. Concise communication is an art, and has value.
There is plenty of research about autism and rather oddly-worded questionnaires and scales designed to highlight social shortcomings. If we are going to think about the strengths of an autistic worldview and also improve communication and understanding between autistics and neurotypicals, it is worthwhile to also look at the shortcomings of neurotypical approaches and attitudes and show where they may be less than effective.
Related ideas
Sarah Hendrickx pointed out this similar list on how to diagnose “NT Syndrome” from a few years ago, and for the academically-inclined Damian Milton has published a very interesting paper that delves into the epistemological aspects of autism expertise and whether we can ever fully inhabit the social world of NTs, or vice versa.
Once again, if you’d like to take a look or contribute, you can view the Google Doc and add your own questions here.

Meltdowns – or how my work and social life fell apart

Something that I wonder about as a late diagnosed autistic/aspergian: what did I think was going on or did others around me think when I had a meltdown?

I am good at masking; I’ll make eye contact and can go for stretches operating apparently ‘normally’ in the big wide world. I can do job interviews and various other social ‘performances,’ and I treat many of my interactions like structured interviews.

There were raging meltdowns labelled ‘tantrums,’ when I was small. I learned quickly that I’d get less negative attention if I ran off sobbing to my room. By the time I was in high school, I generally kept a pretty even demeanour, but would sometimes bail out of lessons with a major headache or coughing fit. Mostly, the meltdowns happened at home in private. I spent many hours stomping angrily around the hills near my house to draw the buzzing out of my brain and body. Nature, even on cold, bleak, rainy day, has always earthed me. I burnt out frequently, spending time in bed at home reading.

In my late teens a few friend witnessed spectacular meltdowns, once when I had a car accident and raged, kicking the vehicle in the road until someone dragged me away. On other occasions I lost it, swearing uncontrollably and kicking inanimate objects (bins, bus shelters). My friend were mainly angry young men, so this behaviour wasn’t considered that much out of the ordinary. “She’s lost the plot!” It was all a bit of a laugh.

Employment

And so it continued into the workplace, mostly bottled up with physical issues such as IBS, migraines, and panic attacks playing out largely on the fringes. I was ‘fine’ at work, waking shaking and gasping for breath in a cold sweat at night or spending whole days at the weekend sleeping. I was plagued with nightmares.

My body and mind had been crying out for over two decades that they just could not cope with this level of input. When I failed to rest or retreat, my body would have its own way by crashing the system through illness.

Finally I confessed at work that I was not coping. This seemed absurd as I was simultaneously taking on more advanced and intellectual assignments. The ‘simple’ routines and responsibilities I was also meant to complete had spiralled out of control. I have since learned that this is a very common pattern among autistic people like myself – the hard things come easily and the easy things can be incredibly hard. In other words, I could (and did) pass a course in quantum mechanics but my brain ground to a halt when faced with four or five simple filing or letter writing tasks due by the end of the day.

There were other signs of not coping. I was drinking too much alcohol in the evenings and too much caffeine to get through the day. I was losing self care routines, eating sporadically and spending unwisely. My behaviour became spiky and several relationships with my peers started to crumble – I was erratic, inappropriate or rude. I’d stopped being “fun and a little bit crazy,” and was now acting just angry, sad, and out of control.

Failing at friendship

Much of this happened outside of the workplace, but one work colleague who had become a friend and drinking buddy was warned off by another woman who told her I couldn’t be trusted, I was unreliable and out of control.

I had given a slightly creepy guy the benefit of the doubt and he was living in one of the rooms in my house. My poor judgement was based on the fact that other people I trusted were friends with him. Later they told me that they didn’t trust him that much, but that they trusted me to make my own decision. How wrong they were about me and how little they knew about my social skills. Autistic people are unfortunately often misled, manipulated and abused for this reason. One of my more impressive meltdowns involved me raging and swearing uncontrollably at him after proof emerged that he had been doing some inappropriate and stalker-ish behaviour. While my reaction was understandable, my actual behaviour was truly a sight to behold. The majority of people (excluding very close friends and family) who have been on the receiving end of one of my extreme meltdowns never speak to me again.

I was on the fringes of a larger group of young people from another country, introduced to me by a mutual friend. They were all up and coming young professionals, did a lot of partying, hosted dinner parties, met in bars and that type of thing. In other words, successful neurotypical young people. To begin with I was accepted. I have no doubt that the fact I was from another country and there were some language bridges to cross was a factor in me not appearing to “stand out” initially for the wrong reasons. In parallel with my performance at work deteriorating, I also blundered through a string of unfortunate social gaffes with various members of this group – including some inappropriate attempts at intimacy. They gradually realised that I was not just “foreign” but also deeply weird by their standards. After several months of being included, they stopped returning my calls, had “other” plans, and politely but firmly made it clear that I was no longer invited.

Burning bridges

At work I was hauled in for a conversation with human resources, and they asked incredulously how it has got this bad, why didn’t I ask for help? I asked myself the same question. The answer? I didn’t think anyone would understand. Not knowing how to ask for help is another common problem for autistic adults like me, I later learned. Even the idea of it makes me very anxious. Through trying to hide my difficulties and act professionally, I had become increasingly unreliable and actually more unprofessional.

Passed over for a promotion that would have meant more of the intellectual work I found so easy, I burned my bridges and left for a similar job elsewhere. In hindsight, much of my behaviour at work had been awkward or embarrassing in some way. I did not understand office politics.

Undiagnosed

All of this happened without my awareness that I was autistic. A number of other people pointed out that some of my behaviour was strange, but it didn’t really register with me that this meant “strange: get help from a professional!” I did seek help for my panic attacks and IBS a few times, but having been assigned a clueless doctor by the NHS and with no-one joining the dots between individual incidents, I was just sent away with some vague advice about “stress.” They were correct that I was suffering from stress, but they did not look further and I did not think to push for more information on the underlying severe anxiety I was dealing with, or the reasons for it.

Some things I learned during this time were:

  • That I could not keep up socially, and needed more time for rest and better routines.
  • That I should choose my flatmates very carefully (I moved into a house share with two kind and trustworthy people next time around, although as it turned out they did have mental health issues of their own.)
  • That office politics are complicated and I needed to watch quite carefully and sometimes keep my head down. (I only partially succeeded in my next job.)
  • That exercise, both in the gym and long solo walks at lunchtime, were absolutely essential to my mental health. Many of these benefits apply to everyone – the part that I understood later on was how important it was to me that during this time I was alone. Without the chance to do this part way through the day I could not function in a 9-5 office environment.

I offer this experience as a window into how an apparently heathy young woman with very good qualifications and superficially acceptable social skills can, in fact, be physically and psychologically falling apart. How someone with a high IQ can be a poor judge of her own and other people’s emotions. How a so-called (and this label is problematic) “highly functioning” autistic might be barely functioning at all…

Hyperlexia, or why I didn’t study English Lit at Uni

Autisticzebra is the first person who’s described an experience that resonates with mine when it comes to books: I was also hyperlexic and didn’t want to study literature because that would have ruined them for me…

autisticzebra

My mother tells a cute story of taking me to work at the Middle Eastern Technical University in Ankara when the babysitter didn’t show up. I guess I was around two years old. At the bus stop, I exclaimed “Bak anne” (Look mommy) “A-K-B-A-N-K-A-S-I… Akbankasi” In Turkey, public benches are often sponsored by banks. The punchline was some onlookers joking about how young college students were these days.

When I was four, and living in Ireland by now, I used to read my brother’s schoolbooks and long for the day I too could go to school. Nobody remembers teaching me how to read.

By age seven, I was getting into trouble for reading when I should have been “paying attention”. My teacher never did catch me out though, I’d know the answer to whatever question he asked me, even while secretly reading my copy of Jane Eyre hidden on my…

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