The emotional rollercoaster of diagnosis

I’ve been thinking about what happens after diagnosis.

For me it has now been over a year since I realised I was autistic. I sought professional validation of that because for me, it added certainty and reassurance. I appreciate that not everyone has access to this, or indeed wants it. Either way, I think that realising you are autistic late in life has a big impact. For this blog post, “diagnosis” includes either professional diagnosis or self diagnosis.

For me, realising I was autistic was a huge adjustment. It was a relief to finally understand why I had felt out of step, struggled with certain things and seemed to have emotions that worked differently to most other people’s. But the emotions involved were complicated. And because processing emotions is something that can take a long time and a lot of misunderstanding and introspection for me, I thought it might be helpful if I list a few of the things I felt. I did not feel all of these right away, I would say it has taken me a full year to process everything and feel comfortable that autism is an important part of my identity (but not the only important aspect of my identity.)

Shock

When the penny dropped (in my case through reading the stories of other autistic women who were diagnosed later on in life) that I could be autistic I was quite shocked. It was a strong emotion and I felt quite fearful and unsettled. Many of the things I believed about myself were challenged – the whole story I had built up about my life up until now seemed potentially false.

Fear

I had a lot of fear about telling people close to me that I thought I could be autistic, and a lot of fear about what that meant for me going forward. I don’t think this is because I thought there was anything “wrong” with being autistic myself, but that I had no idea what this meant in terms of fitting in, and relationships. Would everything change? I am not a big fan of changes that I am not in control of, and this felt beyond my control.

Immersion

I did a lot of obsessive research. I tested myself with online tests. I read all kinds of books, blogs and articles about autism. I became immersed in the topic, as a “special interest,” or obsession. It took up a lot of my time and was very self-oriented, although coincidentally my friendship with another family with autistic members deepened at this time. The whole project of being, or becoming, or learning my identity within the frame of, autism became all consuming.

Grief

I felt sadness, for missed opportunities when knowing I was autistic in the past could have helped me understand why things turned out the way they did. I found myself churning through my own life history. I asked my parents about my early development and recalled situations from childhood. I turned, all over again, a lot of failed friendships and relationships. There was also some grief for future me – some parts of my story involved struggling with certain situations and thinking that if I could just “get my head around it” or learn enough from self-help books I could change. I realised that some traits I had that could be seen as “flaws” were hard wired.

Anger

I don’t think I expressed this as much as some of the other emotions but there is some anger, sometimes about the way I’ve been treated by others but actually, if I’m brutally honest, about how I have treated myself. Many situations in life can be boiled down to a lack of self-knowledge or making poor choices. I think I had a few angry rants about this on social media.

Self Pity

I admit I felt sorry for myself. Not because I was autistic, but because of all the related implications and what a drag they can be and how much easier it is for “everyone else.” Poor me. This aspect for me was part of an ongoing project, namely working through internalised ableism. The shift in understanding about disability issues doesn’t happen overnight.

Acceptance

The reality is that I needed a lot more help and support systems in place than I had had for most of my life. I have a part time job and a family and for me that’s a lot of responsibility. Some of this support came from myself and my immediate family, such as making better meal plans, breaking down tasks, asking for help. I paid for some professional support to manage my health and eating. In other cases it was getting other people to come with me to appointments or help me fill in forms.

All of this involved disclosing my autism, which was new to me and made me anxious. But ultimately it has not been that bad and I’ve mostly had positive or neutral responses. When I spoke to my GP about it, she accepted my autism without question; there was no issue with my optician when I mentioned visual phenomena; education professionals have made themselves available to help me advocate for my child in school, which I previously struggled with.

Perspective

As I mentioned, it is easy to constantly think about autism and how it is affecting my life. As time has passed I have gradually allowed this to move into the background – only somewhat. I think initially my autism self-awareness dial was turned up to 11. These days it’s more like 7, but sometimes at the front of my mind in a challenging situation. It is a very important part of my life and my identity, but autistic people are all very different! There is so much to each personality and life experience.

Joy

Overall I am happy to be autistic. I like my mind; I’ve had an interesting life, even if there have been challenges. I understand myself better now, I am kinder and more supportive to my own needs. I have connected with many people and received interesting information and insight that has helped me to reframe my life. I believe having the time to truly know oneself is a privilege and a gift.

Take your time

My personal belief is that working through all of these emotions and changes takes a lot of energy. it can be exhausting and can bring about physical and emotional shifts. I think I have had more meltdowns, and more burnout. Part of me needed to vent that emotion and take that rest – even if it was not in my conscious control. Getting a diagnosis is not the end destination, it is the start of a journey. It can be a bumpy ride and help is not always offered – you have to seek it out.

 

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Are we REALLY that inflexible?

My son has been struggling so much with the expectations of school lately. A comment from a teacher earlier this week (on handing out a detention for inattentive behaviour)

I’ve seen you able to do this before so I know it’s not because of your autism

The presumption being he should push himself, daily, to meet the same expectations as the rest of the class.

What if…she changed her expectations, and in doing so, taught the class to make adjustments for individual differences?

I could say more but this post from the wonderful Mama Pineapple says it all.

The Misadventures of Mama Pineapple

Less than a fortnight ago, I wrote about being “rigid”.

I explained about my need for schedules, plans, and organisational strategies. My need to prepare, and my alarm and anxiety in the face of uncertainty and ambiguity.

It’s there in my pre-assessment mapping to the DSM-V guidelines, under my response to Criterion B2, exemplified by:

“Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal/non-verbal behavious (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns[…])”

But as always, things are never that simple.

I mean, yes, of course, I need to organise and structure my life in the face of chaos.

Yes, of course, I struggle with change.

Yes, of course, I find “decision fatigue” harder to deal with than your average neurotypical person, because I am overwhelmed when faced with choice.

But the fact is, by the…

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Closing the loop: hyperfocus

I am opening loops.

This is the part of me that is about multiplication, multiplicity, spawning and creativity. it is off-the-hook enthusiasm and is where the spark of an idea bursts out into creation. It is oh so focused and has blocked out the rest of the world, work, responsibility. I may not eat, drink, or answer the phone.

Welcome to hyperfocus.

I have many tabs open, on my computer and in my brain. Like a computer running in parallel I am able to research and buffer a long string of ideas. These particular ideas are about crafts, sewing and knitting. I have just finished a large knitting project and my paid work is in a temporary (but not total) lull. My mental wheels are spinning.

Outside of this focus the world and the people in it are a little dimmed. I am disconnected, dissociated, even, from them, their needs. I try to go through the motions. I’m always thinking about my projects, they fill my entire, busy mind.

Taking it further

One of the many reasons autistic women are often not diagnosed for a long time, if at all, is that their focussed special interests – a common hallmark of autism – blend seamlessly enough into acceptable “female” pursuits.

That teenager you know who loves a boy band…has she memorised the dates of every concert, the lyrics of every song, does she arrange and re-arrange her music collection and memorabilia, talk trivia about band members when people blatantly aren’t interested? Listen to a single song or part of a song on repeat, for hours, every single day?

Maybe she’s just a keen fan. Or maybe she’s autistic. TV shows, bands, crafts, baking, horses. Excessive immersion in these probably won’t stand out, but think about it – are they very different from train spotting? When does a passion become a special interest?

My equivalent of lining up toy cars before I go to sleep is sifting, over and over, through patterns and schematics. It’s very technical, mathematical. I think about lengths, weights, tools. The repetition is soothing. I read about solutions that others have come up with, to adapt their projects to different materials and situations. Maybe it sounds impressive, but really I’m just obsessed with knitting.

Many people love knitting and crafts, but apparently go about them in a different way. I have also been told by an autism professional that many autistic women find a safe haven in the world of crafts, where it is is not considered weird or unfeminine to get lost in the technical details and where socialising has a purpose, and end goal and a clear topic around which to base discussions. (Random socialising is really hard for many of us without scaffolds like this.)

I fret about small details, I know from experience how disappointing it can be if my results aren’t pleasing, don’t fall right, don’t drape correctly, are too tight or too loose. And my parameters are very specific. I feel compelled to keep these failures, and unable to use them. They become clutter, the detritus of honing my skills.

I am slowly learning engineering in cloth.

D.I.Y.

I am an autodidact – I love to teach myself things. From books, from You-Tube, from blogs, manuals, worksheets. Sometimes I even go to classes and learn alongside other people. But I don’t have to. I’ve figured out quite a few skills to a reasonably high level where I can converse knowledgeably with others who are experts and get by, all by myself.

In fact, if I need to converse with someone, I’d very much like it to be a knowledgeable expert or at least someone with a pet theory we can mutually explore. I’m not a fan of small talk.

Back to my projects – over about ten intense hours I have systematically studied the contents of my yarn and fabric collections (I have extensive data on these, online in some cases – thank you Ravelry) and come up with matches. There is great pleasure in finding a pattern that fits the exact weight and amount of yarn or fabric I already have, and which I also like. Since there are thousands or maybe even millions of patterns out there, this can be a big job.

Who knows if I could have got better results from simply asking an expert – the shopkeeper in the yarn or fabric store for example? Sometimes I do ask. Often I discard their advice, finding that they know less about the small niche I’m investigating than I do. Either that or I am poor at communicating my vision with them in person – also very likely.

I enjoy this data mining. It is a harmless diversion. When I was younger and my brain got like this I would often turn it towards gathering people, gathering experiences, gathering life. And then as the hyperfocus wore thin, I would implode, fade, or meltdown, and drive them all away. My photographic memory would be left to sift through the pain, the confusion, the rejection. I would crash inward into myself.

Craft is far safer – yarn and pinking shears never let me down that hard.

Now my projects are lined up – three small knitting projects and two sewing projects. Each one is in a separate bag, the materials, patterns, needles, yarns and threads contained, ready to become something useful.

Hyperfocus is a gift, a superpower. But it doesn’t usually stick around. Those projects are ready for a day when I am “low functioning.” When I am emotional and can’t explain it, when I need a mindless project but can’t think straight to even make dinner. When everyone else is happy doing something and I have an itch in my mind and a hopeless sense of time passing, of loneliness needing an action to give it shape and worth, to turn helplessness into meaningful solitude.

Then I will take up one of my little packages, put together by someone so much more capable that I am today, someone organised and thoughtful, aware of my needs. I will unwrap it with a sense of surprise, having perhaps forgotten what was there.

I will take out my sewing machine or knitting needles and just follow the instructions, industriously empty and holding fast to the known repetition of one stitch after another, the rhythm of creation.

I close the loop, and you admire my work. You have no idea how each stitch is holding me together.

The void

One of those days just crept up on me that leaves me with an aching heart, an empty hollow feeling of disappointment and aloneness. It is a painful loneliness that could not be lifted by anyone. I have cut myself off, pulled up the drawbridge. There is no-where to go.

I was truly on a parallel track to my nearest and dearest. Our communications, intentions and emotions travelling in some similar direction but destined never to join, overlap or coalesce. No common frames of reference, no junctions or intersections. Just frustration and rising emotion, followed by awkward, wooden avoidance. The people who know me best may never, ever understand me. We could be holding hands but between us, some kind of void. A gulf made from unspeakable emotions, frames of reference and expectations that’s impossible to cross.

When I touch the void it overwhelms me, threatens to suck me in and eliminate me, snuff out all meaning. I leave the house and walk and walk avoiding other humans and spending time instead with the trees. The trees whisper things to me and it calms me to listen, even if it is just my imagination. They are timeless, they have perspective, they are rooted and symbiotic among their own kind and with other organisms. They know how it works, they dig deep.

My frustration knows no expression, I am robotic on the outside, devoid of affect, aloof. The gaping hole has swallowed my emotions, they have no names only churning body sensations and various aches like a dull blade dragging around inside me. I already erupted, earlier, for reasons that to me seemed clear like a thin red thread, perfectly balanced and guided by love. But I am wrong, in the wrong, seeing it wrong, acting wrongly, wrongheaded and out of step with all things as they have been ordained, sealed and finalised.

This emotion is familiar. This package of pain, this burden is something I have carried often as I seem to keep picking it up or having it thrust upon me. Either way I thought everyone had a burden like this…I read the self-help books so I thought this was the human condition. Turns out this package of mine is an unusual shape and particularly heavy. it digs in when you walk and leaves you exhausted. Most frustrating, you can’t even pry it open and if you could, you know what you would find inside?

Absolutely nothing.

Conflicted on Twitter

I’ve been having a few issues on Twitter recently.

One of the first pieces of advice I was given when it was confirmed that I am on the autistic spectrum was to go online. There are many, many autistic people sharing their experiences on social media, and the idea was that I could learn from them, gain support, and meet a few people.

I am no stranger to social media. I am in my 40s and am computer-literate. I was using message boards to chat to people frequently before Facebook and Twitter were invented.  I have many friends around the world on Facebook and already had a work-related Twitter account. I have used these media to connect with people for a variety of reasons in the past and so was open to trying this specifically with respect to meeting other autistic people. However I have been surprised at the type of issues that have come up, and how much these have affected me.

At times I have learned a lot and felt extremely supported.

At other times I have felt shamed, misunderstood and embarrassed, and this has led to meltdowns.

Of course these two things can (and do) also happen in real life interactions. But it has been received wisdom for many years that social media, with typed rather than spontaneous, face-to-face interactions, is something of a haven for people with social and communication issues. Long, long before I realised I was autistic myself, I was aware enough of this to point it out to people making negative comments about people who spend “too much time online.” I would say, “yes, but it’s can be a lifeline for some people as well.” Ironically I was already using social media to compensate for some of my difficulties with real-time interactions.

Recently I got so fed up after some harsh and demeaning interactions on Twitter. I thought it may well be a sensible step to use Twitter less or take a break from it because I was getting too drawn in and overwhelmed by what was happening there. To be clear, many of these interactions involved other autistic people.

But I wanted to also check how autistic people broadly felt about Twitter. As a lifetime “outsider” it’s easy to always think: “it’s just me.” So I made a simple poll:

Screenshot 2017-07-26 11.03.33.png

Obviously a Twitter poll is not detailed and refined research, but 123 people responded which gives some kind of snapshot. The good news is that the vast majority of autistic Twitter users who responded (74%) have a fair to excellent experience. But also over a quarter of respondents said they found Twitter difficult but navigable, or even very difficult to the extent it sometimes led to meltdowns or other mental health difficulties.

This poll is imperfect for many reasons that I will leave those of you versed in research and statistics to ponder for yourselves. But I will point out one issue – it excludes those autistics who have already left Twitter due to being unhappy, or who have an account but don’t use it for any number of reasons. I point this out because in the short time I have had this account myself, I have witnessed a number of people getting very upset and stating they are leaving, and then deleting their accounts, or stating Twitter is too much for them/too triggering and withdrawing or shifting to posting very seldom.

The poll also got many comments. I will not quote individuals but here are some of the themes that came up:

  • Sometimes Twitter feels very angry. People can be aggressive.
  • There can be misinformation in the autistic Twitter community.
  • You have to learn to block and mute people and take control of Twitter.
  • There can be harsh responses if someone uses the “wrong” term or language
  • Some users feel silenced or censored – they don’t dare speak up on some issues.
  • Autistic users are vulnerable.
  • There is bullying.
  • People often take a comment the wrong way.
  • Some people don’t want to hear other people’s differing opinions, ever.
  • Some people are unwilling to hear/unable to accept that facts/opinions differ in other cultures/parts of the world
  • Connections can be ephemeral – people disappear, drift in and out, change their accounts.

Very few people who added comments had a simple “Twitter has been totally supportive,” narrative and many spoke of fear, bullying and exclusion.

I want to be clear that I do not blame Twitter as a technology or as a format. That would be technological determinism, which I do not subscribe to. Twitter is a tool and it’s up to us how we use it.

I also accept that we are all different and will have a range of experiences, as well as varying levels of comfort with how we adapt Twitter’s settings (e.g. blocking, muting) to suit our needs. We will also have varying emotional resilience and reactivity. I admit I have let some things “get to me” that others would have just moved on from – however I do think perseverating and self-blame for failed social connections are common among autistic people.

The double edged sword may be that in reaching out to communicate with strangers, we can benefit from enormous support; and also risk feeling ostracised not just by our neurotypical peers, but also by other members of the autistic community.

 

 

Credit: Free use Twitter logo by @harryarts incorporated panel designed by me.

Masking as martyrdom

I have read a few things about martyrdom, and had quite a number of discussions about it, particularly with other women. Personally I don’t think this issue is just one for women, but this is the context in which I’ve heard it discussed.

 

The definition of martyrdom I’m talking about is this one:

A display of pretended or exaggerated suffering to obtain sympathy.

 

Somehow among a certain group of women (particularly those that do a lot, who are carers or mothers with many family obligations and high standards) the meaning has shifted to this:

Doing too fucking much for other people at the expense of oneself

The idea of exaggerating one’s deeds to gain sympathy has fallen aside somewhat, and been replaced with that of a person who has largely forgotten or struggles to take care of themself, and instead spends almost all of their time being of service to others, and is not particularly recognized for doing so.

If you are autistic like me, you might want to re-read the above sentence. I may forget to take care of myself, or when I do it takes a lot of effort, reminders and rehearsals. I wear a mask to keep others happy a lot of the time, and when it falls due to exhaustion or meltdown, friends and family are usually disappointed with me. Therefore I do it at least in part for them. All of this takes a lot of energy but there is little or recognition. I don’t get much praise for just acting “normal.”

How do I see martyrdom?

Rather than just “trying to obtain sympathy,” the discourse has broadened to include repeatedly taking on far more than you can possibly manage (overstepping actual capacity). These acts of service can become not gifts freely offered, but an exercise in stress, lost energy and ultimately, resentment. From what I have observed, many neurotypical people don’t set out deliberately to do too much so that they can get sympathy and whine about it later (although a few do, for perhaps more pathological reasons). Most just set out with good intentions or perhaps an unrealistic sense of their own capabilities. Good intentions can sour when it all gets too much – some people then “enjoy” grumbling or a bit of a pity party. But it’s the individuals who repeat this pattern time and again whom I would call martyrs. They keep on giving until there is literally nothing left; it’s an act of sacrifice in the end, rather than of service. They don’t look after themselves.

How is this relevant to me? Well for years I pushed myself to please others, to fit in, and particularly to do acts of caring and service for my family or community. This would always have a limited shelf life, however, because eventually (or quite quickly in some cases) I would have a meltdown or burn out. This means my behavior became socially unacceptable (and in that moment, more memorable than my shining deeds), or I ended up collapsing and retreating and leaving promised actions unfinished. Efforts to be of service were a disservice to others and myself.

I would suggest that the difference between the standard-issue martyr and me is about the degree of what happens at overcapacity. For me the situation would blow up so badly, or I would withdraw so completely, that I burned my bridges or caused serious upset. This as compared to a typical committee member for a worthy-but-dull cause that you have met, who moans about having to go to “yet another AGM.” Even if things get a bit heated, or very dreary, they will be back for more.

Motherhood 

I will compare myself to other mothers because that’s the arena in which a lot of this played out – but it could just as easily be another situation.

I did the bulk of my parenting (up to kids in secondary education) with no idea I was autistic. I literally could not fathom how other parents would be up until three AM icing a tiered birthday cake and then still make it to early morning soccer practice looking immaculate with a fully fed and dressed baby under one arm. To give you a clue – I struggled with the basics of regular meals, clean clothes and showing up to school on time. Almost every day.

I did it. Just. There was no neglect and everyone was safe and loved. But I often felt like a hollow shell, and sometimes looked like one, too. One in-law commented on how badly dressed and ungroomed I was at her wedding. By the time my next sibling got married, my other sister-to-be took me in hand and picked clothes for me and took me to have my hair done, arranging a friend to look after my toddler. This stuff was not invisible – it was plain to see that I was not reliably coping or taking care of myself.

I simply did not have the tools in the first place, but I kept on giving and giving because I loved my kids and was trying to be like the other mums, even just a little bit. Copying how other women around me behave is something I’ve always done to some extent. If I don’t do it, social situations can get very, very challenging, very quickly. This is masking.

Thriving

I also came across super-parents, the ones who ran the PTA and were always perfectly groomed with neat homes and drove their five kids to three different extra-curricular activities per night and could get teachers to listen to them and other parents to like them. Who still had the energy to do things to help out other parents or their community and plan fabulous vacations, and stay fit.

I have an inkling that those parents are the yardsticks that most people are using. When someone tries to do all of that and it falls apart or they snap or have a health crisis or their marriage falls apart…then they realize they have been martyring themselves. Trying to do too much to get approval or sympathy. Reaching beyond their natural capacity, having “stretch goals,” wanting “it all.” The cultural narrative has taught us this is possible.

But for many of us, it’s a blatant lie.

Coping

For me as the undiagnosed autistic mum, I wasn’t particularly looking for approval or sympathy. I didn’t have ambitions to join the PTA or have my kids prove anything. I just wanted to be accepted, as I was. I was like the little subsistence farmer trying to keep his one tiny yard of crops alive to survive the winter; meanwhile the big shot farmers with acres of land would speed past waving from their high-tech harvesting machinery, reaping their rewards with plenty to spare and wondering why I was still scrabbling about in the dirt.

Masking for an autistic person is about keeping others happy, about stretching hard to fit the social environment and make it work. It’s about not speaking up and saying:

“This environment is just really tough for me. I don’t think it’s going to work unless some things change…”

Self-care

These are my thoughts. I’ll be martyring myself if I write much more as it’s been a long day, and I’m getting better and better at taking care of myself properly.

I just want to leave you with the thought that as autistics, we are caught between a rock and a hard place: To blend and interface even partly with neurotypical people, we have to stretch ourselves out of shape, push our limits and put ourselves last. This is martyrdom.

And yet in so many situations, if we show up without our masks, we won’t even be allowed to join in because we are spoiling things for other people. Showing our true faces is a step towards vulnerability, and potential rejection. But that’s a topic for another day.

Martyrdom is a form of victimhood. Radical self-acceptance and extreme self-care are the only way forward, however hard that sounds.

 

 

 

 

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