‘L’ Liberty, leisure, love (and loss)

A-Z of #autism from a personal #ActuallyAutistic perspective.

One of the things frequently denied to autistic people is the freedom to be our authentic selves. In terms of learning, leisure, and lifestyle, we’re often under pressure to ‘fit in’. No one has complete liberty, but we have less than most. We discover early on than typical education doesn’t necessarily cater to our needs. Later on, we realise that our livelihood is likely to depend on masking well enough not to seem all that autistic. Sometimes we willingly give up our liberty for someone we love; taking on a caring role, and setting their needs above our own.

Liberty 1: the quality or state of being free: a: the power to do as one pleases. b: freedom from physical restraint. c: freedom from arbitrary or despotic control. d: the positive enjoyment of various social, political, or economic rights and privileges. (Merriam Webster definition).

Some autistic people are literally denied liberty – imprisoned, detained, and physically restrained. Others of us are constrained by situations and circumstances that don’t meet our needs. The inaccessibility of education, health, housing, and employment can have long term consequences. Look how serious this blog has become… I’m probably not the only autistic person who’s been told to “lighten up”. I tend to see the serious side of things. As a child my smile was a way of saying “I’m ok, please leave me alone to think about things intensely”.  

Learning is one of my leisure activities. The most compelling lesson I attended at school was a lecture on lateral thinking by Edward de Bono. What he described fitted my preference for logical, analytical, associative (rather than linear) problem solving.  I found out recently that de Bono proposed a suite of new words based on numbers, representing useful ideas or situations that lacked a single-word representation. Code 6/2 meant: “Give me my point of view and I will give you your point of view… Such a code might be used in situations where one or both of two parties in a dispute are making insufficient effort to understand the other’s perspective.” I love this idea! A codified system would lighten the communication load. Concise numerical indicators could convey complex ideas. It’ll never catch on though, there’d be far too much clarity!

When I worked full-time I had very little leisure time. I’d often go into work early and stay late, to take advantage of no one else being there. And by the time the evening or weekend came I’d be too tired to do anything much. What I didn’t know then was how dangerous it was to stop doing the things I enjoyed. My interests were more than leisure pursuits, they were a way of recharging my energy levels. Instead of seeing my interests as a lifeline, I’d work myself to the point of exhaustion before being forced to take a break.

Recognising we need a break, and being able to take one, are two completely different things. When I did research with family carers I met a mum who had requested respite care for her child so she could go sea fishing. But this was seen as “frivolous” by social services, and not a necessity. It’s not leisure if we simply replace one energy-sapping task with another, but value judgements are made about the ‘legitimate’ use of time. Learning a language is likely to be seen as worthy, while lounging about making Lego models risks being seen as indulgent. Knowing my limits, and not seeing them as a limitation, is one of the most important life changes I’ve made since discovering I’m autistic. I try not to overcommit myself but if something unexpected happens I’ll reschedule something rather than risk getting overloaded. This isn’t being lazy or a ‘lightweight’, it’s a legitimate survival mechanism.

Perfectionism seems to be quite a common autistic trait. When I was younger not being able to be ‘laissez-faire or ‘lax’ sometimes led to overload. I needed to languish on my own after periods of intense activity, but I had no idea why. When I’m alone I can let my guard down. I don’t have to think about how I come across. I don’t have to plan what I’m going to say (or speak at all). I don’t have to review what just happened to make sure it was ok. It feels liberating.

I’ve left it late to talk about love. Perhaps I’m avoiding the subject. It’s immense. Love is a word we got told off for using too liberally at school. “You don’t really ‘love’ that tree, landscape or insect.” Actually I did. I was enchanted by nature and the fascination of the physical world. The way water carved valleys out of rock. Stone steps worn down by generations of feet. Volcanoes erupting. Woodlice rolling themselves into tiny balls. Sunsets. I fell in love a lot, and not just with people. The security of being loved by my parents was a legacy from childhood but my love life was a different matter. Lasting romantic love eluded me for a long time, partly because I was working out who I was. I got there eventually, with the help of a dating website, a spreadsheet, and some logical, analytical thinking. But love can only exist in the shadow of loss. I’ve grown more conscious of this as I’ve got older. Love is bitter sweet.   

@NortherlyRose

Man and small dog silhouetted in bright light in a brick tunnel

#JusticeForZoe

In February 2021 I attended the Zoom launch of a book by Caroline Aldridge about her son Tim called: He Died Waiting: Learning the lessons – a bereaved mother’s view of mental health services. Dr Sara Ryan was also there (she wrote the foreword for the book). Sara’s son Connor Sparrowhawk, who was autistic and had epilepsy, died in a specialist NHS unit as a result of indifference and neglect.

Attending this event prompted me to write a Twitter thread which Caroline then posted on her website as a blog. In my Twitter thread / blog I mentioned ‘Zoe’ – Zoe Zaremba, a young autistic woman who was known and loved by many people and terribly failed by a mental health trust. An inquest into Zoe’s death ended today. Her mother Jean told the coroner: “She cried out for help but she did not receive it. She had lost all hope.”

The coroner concluded that “Zoe died by suicide contributed to by actions and inactions of mental health clinicians entrusted to keep her safe in a care system which was underdeveloped to manage an autistic individual with complex needs”. He also said that although improvements were being made by the health trust these were from a “very low base” and in 2022, mental health services should be better attuned to autistic people.     

I am re-posting this blog tonight, in Zoe’s memory.   

Last night I made a pledge…

The crisis in mental health services is no secret. Lives have been lost and ruined. Family and friends left bereft with grief. We’re told repeatedly lessons have been learnt. But have they? It’s time to make ‘good trouble’ about this.

‘Out of sight, out of mind’ or so the saying goes. That’s how people with severe mental illness were dealt with in my childhood. The psychiatric hospital, in its forbidding Victorian building, was somewhere you got ‘put away’. I volunteered there. It was full of misery.

But how are things now? It’s five decades since I first met people suffering terribly because mental health services ignored them, or abused them. With all the advances in our understanding of mental health surely things are very different these days? I wish I could say so.

The commitment I made is a #PledgeForTim. It’s also a pledge for Connor, Zoe, Becky… so many more. Tim died waiting because he didn’t ‘fit’ services. As his mum said, people like Tim with ‘complex needs’ are often called ‘difficult to engage’, when it’s services that are.

It’s not just mental health services that are inflicting terrible harm by neglecting and abusing people. It’s all the other agencies too, housing, DWP, primary care, police.

This blog is about what needs to change, based on my own and other people’s experiences.

Part of the problem with mental health services is that we only really find out what they’re like when we try to use them, or someone close to us does. Some good people work in mental health, and some people get a good mental health service.

But this isn’t always the case.

If anyone should have been able to navigate mental health services I should have.

I’d volunteered in them, worked in them, researched them, lectured on them.

But when I needed support that went beyond what my GP and family and friends could provide I was terribly let down.

The first problem I encountered was that I didn’t ‘fit’ the service. In the summer of 2018 I had referred myself for autism assessment and I was in crisis. IAPT (Improving Access to Psychological Therapies) had little experience of working with autistic people and communicating with them was confusing and distressing.

This was my first experience of being spoken to harshly and without any empathy or compassion. I was annoying because I wouldn’t say what they wanted me to. What value does a risk assessment have if it isn’t based on truth?

Deemed ‘too complex’ I was passed on to the CMHT (Community Mental Health Team). The gateway process gave me hope. I was seen by someone who understood #trauma and whose partner was trained in EMDR (Eye Movement, Desensitisation and Reprocessing). I really believed I was on the point of getting the kind of specialist help I needed. But from then on things started going terribly wrong

Each time I was seen by a Psychology Assistant my distress increased. I dreaded going. The service was described as ‘trauma informed’, but clearly wasn’t. Imagine going to hospital with a broken leg, and having someone jump on it, then give you a paracetamol for the pain.

My partner came with me and he was horrified by what happened. No reference to previous meetings, no structure or purpose. I’d assumed I was being assessed, but we were told I actually had a formulation and a care plan. I had never even seen these, so we asked for copies.

When I read the formulation and care plan I was acutely distressed. Not only had they muddled up details of my life, so it didn’t even seem to relate to me, EUPD (Emotionally Unstable Personality Disorder) had been added, when my only diagnosis was autism. And the formulation actually said “no evidence of trauma”.

I sat in the car clutching a piece paper telling me what I’d shared with the CMHT had been disregarded. I had given them a summary of the significant traumatic experiences I’d experienced in adult life. I hadn’t even kept a copy of this, it was far too painful to look at.

I knew the implications of being labelled with EUPD. People with ‘Personality Disorder’ are treated inhumanely and discriminated against. ‘Personality Disorder’ is no longer supposed to be a diagnosis of exclusion, but it is. It’s a very sticky label, and hard to remove.

That day I came close to suicide, not in spite of the best efforts of services, but because they had let me down. When my partner complained about the formulation he was told the EUPD diagnosis was a “mistake”. It happened when my notes were typed over someone else’s.

I could have died

….because of lack of empathy

….because of negligence

….because I didn’t quite fit

….because I wasn’t involved

…because trauma was ignored

…because of short-cuts

People die like this all the time.

I thought a lot about the person whose record was over-typed to create my record.

Did they actually have EUPD or were they autistic like me? It’s so dangerous when mental health services fail to understand the myriad of ways in which people can be autistic.

Last night I attended the Zoom launch of Caroline Aldridge’s book ‘He Died Waiting’, about her son Tim. I was rooted to the spot as Caroline and Sara Ryan shared the most painful and personal memories about their beloved sons, who were failed, and who died.

Contact with mental health services reduces our vibrant life stories to case notes.

Tim and Connor were loved and loving characterful young men. Tim wore a top hat and provided lots of support to his friends. Connor was known as Laughing Boy, and made his sister feel safe. We heard from Rachel whose daughter’s life was saved by a stroke of luck. She spoke to a commissioner who believed her and intervened. As the mother of adult children these accounts affected me deeply.

We can feel immense sorrow but we should also be angry and do something.

We need a warrior spirit to take this on. And we have to think carefully about how to make a difference. I stopped short of making a formal complaint because services were already so overstretched. Instead I gave commissioners a detailed account of what had happened to me.

One thing’s for sure, we’ve had enough platitudes. Being told we need to be patient, change is coming, it’s incremental. It says something about the state of things that I’d have more confidence in Panorama uncovering issues than the CQC. Lessons still haven’t been learnt.

My local mental health Trust is having a ‘Big Conversation’. I’m invited to let them know my thoughts on draft plans for the next 3 years: “are we focusing on the right things or is anything missing?” But even with my professional background what follows needs a lot of deciphering.

It’s easy to make claims about co-production; this should have been the basis for my formulation and care plan. I won’t give up on trying to make a difference, but I won’t waste time on processes that are flawed. It’s meaningful involvement or no involvement from now on.

Yesterday Caroline said she wished she’d been less meek and made more noise. But parents who are ‘demanding’ tend to be seen as troublemakers and disregarded anyway. They literally can’t win, and yet they’re often left burdened with guilt, as well as with grief.

I want to mention the work done by George Julian and Inquest to focus attention on so many lost lives. The coronial process could easily result in preventable deaths being out of sight and out of mind. George’s live tweeting means we can’t ignore what’s going on.

The way people with learning disabilities, autism, or complex mental health issues are treated shows that our lives are valued less than other people’s. The level of neglect sometimes suggests we’re seen as worthless.

What’s missing? they ask.

Compassion.

Equality.

Justice.

Love.

A sense of humanity that includes everyone, no matter how divergent or ‘complex’, should be at the heart of mental health services. Where this is missing we risk being excluded, diminished, or demeaned if we seek help. In the worst of circumstances we may not even survive.

Educating the next generations of clinicians and social workers is vital, but they won’t survive immersion in toxic cultures. We need honesty from organisations where poor care and neglect have become systemic and endemic. Instead we get gaslighted with management speak.

On our side we have passion, persistence and a common purpose.

Rose Matthews https://www.learningsocialworker.com/single-post/last-night-i-made-a-pledge-a-review-of-the-he-died-waiting-book-launch

My blog was cited in this article by Dr Chloe Beale, consultant liaison psychiatrist. The abstract explains what has gone so terribly wrong:

‘We might not like to admit it – even fail to realise it – but National Health Service (NHS) mental health service structures have become increasingly focused on how to deny people care instead of help them to access it. Clinicians learn the art of self-delusion, convincing ourselves we are not letting patients down but, instead, doing the clinically appropriate thing. Well-meant initiatives become misappropriated to justify neglect. Are we trying to protect ourselves against the knowledge that we’re failing our patients, or is collusion simply the easiest option? Problematic language endemic in psychiatry reveals a deeper issue: a culture of fear and falsehood, leading to iatrogenic harm. An excessively risk-averse and under-resourced system may drain its clinicians of compassion, losing sight of the human being behind each ‘protected’ bed and rejected referral.’

Chloe Beale Magical thinking and moral injury: exclusion culture in psychiatry | BJPsych Bulletin | Cambridge Core

Tonight I am renewing my pledge.  

#JusticeForZoe

@NortherlyRose

Zoe Zaremba

‘K’ Knowledge, knockbacks, and kindness

A-Z of #autism from a personal #ActuallyAutistic perspective

One of the Fairport Convention songs I used to listen to in my teenage years always seemed like it could have been written about me: “I know Rosie you’re living in a world you didn’t make / And I know it’s hard feeling happy when the things you want aren’t even there to take.” What made it even more perfect was that I was known as ‘Rosie’ in those days, and I played the violin (or fiddle in folk parlance). “Come on Rosie, rosin up the bow / For the more I learn it’s the less I seem to know” It was this last line that really struck a chord with me.

That’s how it’s been ever since really, finding out more and more about things but feeling I know even less. There’s an Albert Einstein quote along these lines, which may be where Dave Swarbrick got the idea: “The more I learn, the more I realize how much I don’t know.”

I’ve been on a 62-year long journey of self-discovery. I think back to 12-year-old me, 22-year-old me, 32-year-old me. All the ages and stages of ‘me’ that there have ever been. I was always on a quest to understand myself, and how I related to the world around me. Sometimes I ended up tying myself up in knots, trying to make sense of things. Although in some ways I had lots of insight, I lacked a vital piece of information. I didn’t know I was autistic, and nor did anyone else. The absence of this knowledge left us all a bit adrift.

But just think what ‘autism knowledge’ would have looked like in 1972, 1982, or 1992… Even now, a lot of the information kicking around is archaic, overly-medical, and soul-destroying. Back then it was far worse. Voices of autistic people hardly ever broke the surface. So, although the development of my self-knowledge may have been impeded by not knowing that I was autistic, at least I escaped being heavily stigmatised, or worse. I came up with other explanations for the knock-backs I faced. Some of it was attributed to sexism. I was a career focused woman who sometimes made waves.

The career path I took gave me a solid grounding in theories of human behaviour. I also did lots of ‘practicals’ involving communication skills. Maybe that’s why I didn’t ‘seem’ to be autistic. I learned to moderate many of my natural traits to fit in with neurotypical norms and ideals. But in spite of all my best efforts I still felt at odds with the world. I felt emotions more intensely than other people, and had moral qualms over things they had no issues with. I was different enough to feel uncomfortable, but not enough for anyone to question why.

My original thinking was a strength in academia, but it had both good and bad sides. I became totally immersed in research and teaching, to the exclusion of almost everything else. And pressure to publish often prevented me from simply enjoying being a parent and partner. I wish I’d known why I was always so knackered. It would have allowed me to be a bit kinder to myself. Academia isn’t known for encouraging self-care. On the contrary it exploits the passion most people have for their work. And it’s highly, sometimes horribly, competitive.

In many situations we’re required to know what’s expected of us without actually being told. Maybe this knowledge is absorbed subliminally, through contact with other people. That could explain why my understanding sometimes falls short. I’ve always been a loner. It’s not that I’m necessarily taking a stand against the status quo, although I’m always looking to improve standard ways of doing things. It’s more that I don’t know I’m out of kilter unless someone tells me. Occasionally it’s pointed out, kindly or unkindly, that I’m out of step.

Of course, the more kudos and power you have the more freedom you’re given to do your own thing. There have been many occasions when I’ve been oppressed or abused due to my gender. A white, middle-class man would never have been treated in the same way. Male privilege is real. My autistic traits often conflicted with what was ‘expected’ of women and girls. Perhaps that’s why I felt a certain freedom as a police officer. I enjoyed proxy male status through the power invested in my role. And I could use my authority and knowledge without being seen as bossy.

I remember women who went to court in leather jackets being told by their solicitors to wear something “softer”. After I left the police, I sometimes got the same kind of feedback about my communication style. The message was more subtle, but the same: “Be softer and more deferential” (in other words less masculine).

I was kind and compassionate, but it was obvious that most people expected me to see, and to say, things differently. I knew that I was failing to achieve the kind of feminine ideal expected of women. But I didn’t realise that I was also being insufficiently neurotypical. I wish I’d kept the auto signature someone included on an email they once sent me. It went something like this: ‘If the tone of this email seems slightly off, it may be because my first language isn’t English.’ I’ve considered adapting this for being #ActuallyAutistic.

I’d wear it as a badge for face-to-face conversations as well. And it just occurred to me (dipping into a research report) that facial expression may be an issue too. If I’m not smiling inanely people think I’m fed up or cross. My natural expression is a serious face. I picked up some neurotypical communication ‘knacks’. I can still pull them out of the bag when I have to. But it’s so much more relaxing to enjoy natural conversation. It’s like a ‘kith and kin’ kind of a thing. Being autistic creates a bond between us that somehow seems deeper.

Effortless autistic conversation is joyful. For a start, I don’t have to disguise how keen I am on things. I can skip the intro and go straight to the heart of the matter without a kerfuffle. Like listing some of the words beginning with ‘K’ that happen to appeal to me. Such as kismet, kitten, kangaroo, kindergarten, kinaesthetic, kinetic, knickerbocker, knavish, knobs, kitsch, keepsakes, kissing, kindle, kaleidoscope, kickstart, kempt, knots, kerplunk, knuckleduster, kvetch, kiwi fruit, korma, kohlrabi. Guess what I’m going to do next?

Kaleidoscope, kangaroo, keepsakes, kempt, kerplunk, kickstart, kinaesthetic, kindergarten, kindle, kinetic, kismet, kissing, kitsch, kitten, kiwi fruit, knavish, knickerbocker, knobs, knots, knuckleduster, kohlrabi, korma, kvetch. They should be in alphabetical order now! Can you tell I’ve been missing casual library work during the pandemic? One of my secret pleasures is reshelving. It’s basically lining up books, in a great long alpha-numerical sequence. It fills me with joy. I could do it all day!

Kindness doesn’t get nearly enough kudos. From education, to mental health services, asylum policy and welfare benefits, this Tory government mandates cruelty. Cruelty and neglect. But I was saved by kindness. The kindness of the teachers who nurtured and protected me. The kindness of colleagues who reached out after I’d been bullied, so I knew it wasn’t just me. The kindness of health professionals who took time to listen and understand. The kindness of strangers on helplines, holding out faint glimmers of hope. You were exceptional.

Why has kindness become such a dangerous intervention? What is it that we are terrified of? That people might feel human warmth and connection? That they might not feel so abandoned and alone? That it might open the floodgates with everyone wanting some of this kindness? The absence of kindness has a visceral impact. Like being in a room with all the air sucked out. I can tell if people care. If you’re a stranger at a bus stop, I have realistic expectations. But if you’ve chosen to go into ‘a caring profession’ it should be part of the job.

Kindness is no more expensive, or resource intensive, than cruelty. So where’s the hidden cost? Being kind means seeing people as equal and deserving, not second-class citizens to be written off. And it means letting go of power, and tokenistic forms of collaboration. Ultimately the kindness of autistic people helped me to recognise myself. We know what it’s like to be lost and alone in an unkind world. We shouldn’t have to rely on each other for empathy and compassion, but we often do.

@NortherlyRose

Open ripe fig in the shape of a heart

‘J’ is for Jabberwocky, justice and joy

A-Z of #autism from a personal #ActuallyAutistic perspective.

Jabberwocky might seem a strange place to start. It’s ostensibly a nonsense poem, made up of meaningless words. Yet it tells a traditional tale, of the triumph of good over evil, found in classic poems like Beowulf. It’s a joyful depiction of justice. Here’s a link to the poem, with a commentary by Dr Oliver Tearle, just in case you feel inclined to immerse yourself in this “masterpiece of linguistic inventiveness” A Short Analysis of ‘Jabberwocky’ by Lewis Carroll – Interesting Literature

Love of language is one of the things that gives me autistic joy. Jokes involving witty wordplay, and absurd comedic juxtapositions, always entertain me. And it’s not just the meaning that words convey, it’s the way they look on the page, their alignment, and justification. In some situations words seem inadequate. Such as when “research” on autistic people consists of unethical, inhumane experiments. How can researchers and ethics boards possibly justify that? The inescapable conclusion is autistic people are judged as being ‘lesser than’.

In terms of criminal justice, and justice in general, autistic people appear less likely to get justice. As victims, or as defendants, the odds seem stacked against us. We also face injustices in education, employment, health, housing, and the systems we use to appeal decisions . This goes beyond the ‘letter of the law’. It’s about how justice is designed and delivered. About policing, and CPS. And how magistrates, judges and juries conduct deliberations. Who is on the bench and who is not. Recognising injustice is the first step in addressing it.

You don’t have to commit a criminal offence to be detained. It’s enough to be autistic. Sensory overload of unsuitable environments can cause autistic “behaviours” to spiral. Misguided treatment requires you to modify “behaviour”. But if you can’t where’s the justice? The way we’re judged by others can have devastating conveniences. As well as injustices dished out by society, there are painful, personal slights. Patronising assumptions about our lack of capability. Or the friend who doesn’t reply once you’ve told them you’re autistic.

“Thinking is difficult, that’s why most people judge.” C.G. Jung Misguided judgements are often made about autistic empathy, executive function, and Theory of Mind. And the mere fact we’re autistic can cause some people to cast doubt on the quality of the judgements we make. Judgement is often based on prejudice. That’s why I dislike it. In organisations it jars with the principles of equality and diversity. And it can feature in toxic relationships. Autistic people are in jeopardy of being judged unfairly, both personally and professionally.

Before my autism diagnosis I judged myself harshly. Why was I so thin-skinned and over-sensitive? Why hadn’t I managed to stick at jobs? The truth is, I was frequently driven out of them. Intolerance of abuse, bullying, and corruption, forced me to jettison employment. Acting on principle may not have seemed judicious to other people. But only I knew how much harm it did to stay, once I’d seen the lies. It wasn’t as if I went looking for trouble. I stumbled over it. Like the email I was accidentally cc’d into where someone took a bribe.

I often found it hard to believe what was going on. In the public sector, in universities, and in charities, where standards of conduct were supposed to apply. Being a ‘whistle blower’ was the most heinous crime. I ended up with quite a jaundiced view of human behaviour. Of course there are good, honest, and kind people in all organisations. But what happens if abusive things happen? Dare they speak up? Will they risk losing their jobs? Or do they bury their heads and pretend not to notice? Becoming a bystander is a form of collusion.

‘Just’ can be quite a dishonest word. “Don’t worry, it’s just a pin prick…” “It was just a bit of banter” “I’ll just keep you a moment…” Some fears are well founded. “It’s just a wasp” may not help much if you know if you get stung you’ll develop anaphylactic shock.

“Aren’t you going to join in?” is another dodgy phrase. Enforced “joining in” is what school is about, so still being exhorted to do it in adulthood is a big disappointment. The onlooker role allows people who crave attention to have more of it. It should be respected. “If you don’t join in you’ll spoil it for other people” is a huge big lie intended to make us feel guilty. I’m much more likely to spoil things if I’m forced to participate, but really don’t want to. What we need are the kind of activities we actually want to join in with.

Most of the things I want to join in with are intended for the under 5s. Mud-pie making, bug walks, and fancy dress competitions. I have a childlike passion for jelly (jello) because of its translucent colour, wibbly-wobbliness, and how it changes from liquid to solid. Joy sustains me through grief, anger, fear, doubt, and loss. But when despondency grabs me, delight disappears. Senses that soothed me become jarring and jolting. I’m jumpy and jittery. But if I trust in the alchemy through which joy gets created, somehow it finds me again.

@NortherlyRose

‘I’s identity, individuality and inclusion

A-Z of #autism from a personal #ActuallyAutistic perspective.

I’m autistic in every part of my being, from birth to death. It’s my identity, not an acquired disease. And I’m proud, in spite of the negativity autism sometimes attracts. My identity is bound up with all the other things that I am. Being a white, AFAB, cis gender, mother, grandmother, partner, sibling, daughter, activist, academic, researcher, artist and social worker combined to make me who I am. I had additional privileges because of some of these characteristics – to a certain extent my professional background protected me from harm. And now I’m not just older but old I’m cloaked in the invisibility of age.

The individuality of each autistic person shouldn’t need to be stated. Like all human beings each of us is unique. But constant reminders that we’re all different can obscure the many things we have in common. A collective sense of identity can empower us. At yesterday’s fundraiser for Ukrainian refuges someone said that in a room full of autistic people the first thing we notice is that we’re all the same, the second thing we notice is that we’re all different.   

I had patchy WiFi and mobile access when I first wrote this blog, so it got a bit threadbare at times. I dropped in and added to it whenever I got online. It reminded me of the early days of the internet, when I waited with anxious anticipation while the modem sang its tune. The internet is probably the thing that’s made the biggest difference to my life. I can’t imagine being without it. It’s how I find information, escape isolation, express individuality, get inspired. And it’s how I connect with other autistic people, including those I know in ‘real life’.

Don’t let anyone tell you online relationships don’t count. That’s so ableist. For many of us the interaction we have with people we communicate with ‘virtually’ is relatively effortless. If I translated everyday online communication into face to face contact I’d be exhausted. Being online is so integral to my daily life it’s good to be reminded I still exist without it. That only generally happens when my battery runs out, or I’m somewhere remote.  The last time I had restricted internet access was when I worked in a prison. I was so busy I scarcely had time to notice it. But sometimes at lunchtime I’d go through the security rigmarole just to sit in my car and access social media. Institutions have a bad effect on me. I realised I didn’t get along well in institutions long before I knew I was autistic. For a start they’re too crowded and noisy and smelly. And they have all kind of strange, illogical rules, only some of which apply. It’s hard to be invisible in most institutions, even if I try.

It has always been difficult for me to spend the whole day in an institution, like a school, college, or office type place of work. But when I had to stay overnight too (as a residential childcare worker, or hospital patient) institutional life really took its toll. I couldn’t handle the lack of privacy. In institutions I was constantly being assaulted by intense sensory experiences. Twice I was actually forced to work in offices which had been flooded by sewage effluent. It’s a sign of how desperate I was to retain my job, and livelihood, that I didn’t just walk out. On the first occasion an unpleasantly autocratic manager, who made our lives hell, reported loud gurgling from pipes in the ceiling above their office. Maintenance came and took a look, but didn’t fix the problem. The ceiling collapsed a day or two later, and the shit almost literally hit the fan. It was almost worth paddling along the effluent soaked carpet in the corridor to see the “keep out: contaminated area!” notice on their office door.

Institutions are designed for the convenience of the institution, not the individual. Things are set up for the many, not the few. When I went to police college in 1984 I was vegetarian. I got offered grated cheese, and the vegetables everyone else was having, on the first night and for the next 12 weeks. Special dietary requirements weren’t a thing back then. I can see how inconvenient it was to cater for me, the only vegetarian in college. And I rather doubt that it was rennet free cheddar but it’s no good saying you support diversity and inclusion unless you mean it.

During the long interlude in the middle of this thread I was so immersed in what I was doing that several hours slipped by. Although I wasn’t aware of being in a state of total concentration, once It was over I felt exhausted. When I had a long commute to and from work my body often arrived home long before my brain. Ordinary sounds (TV, sneezing, doors shutting) were unbearably loud, so I retreated upstairs to recover. In solitude and silence. Interaction becomes very difficult for me once I start to become overloaded. Luckily I’ve got beyond the stage of pretending that I’m not affected.

Being able to isolate myself from other people for part of the day is really important for me. Commuting to and from work by car, as opposed to public transport, has always been less tiring. I didn’t understand why until I got my autism diagnosis. I need a certain amount of solitude. I used to dread car share schemes at work because not joining in looked bad, but having to interact with someone was far worse. Luckily my working hours were generally unpredictable enough to make it an impossibility. I crave independence in almost every aspect of my life.

Group decision making is often frustrating. On holiday with several people (what was I thinking of?) we tried to agree on a place to eat. We drifted around for ages because someone objected to every restaurant. It would have been so much easier to go our own separate ways. Individual portions, individual schedules, individual travel arrangements, individual accommodation. Everything ‘individual’ appeals to me. I used to see myself as ‘highly individual’, which was somewhere on a scale between ‘individualistic’ and ‘idiosyncratic’. Now I know that I’m just ‘autistic’!

I always liked the idea of being a bit ‘irregular’, once I got over the self-consciousness of youth. I didn’t think this made me any less valuable as a person. But sadly, some people see being autistic as being: Inadequate / Insensitive / Incapable / Imperfect / Impaired / Inferior. But, for me, being autistic is much more about having an inclination towards: Intuition / Idealism / Interests / Intricacy / Intensity / Innovation / Immediacy / Intelligence*/ Individuality / Introspection / Inventiveness / Industriousness *not IQ. So many positive, affirmative, ‘I’ words. There are lots of ways of being intelligent, some of which are hardly valued at all. I’ve always had a problem with intelligence being equated with IQ, even though I used to score highly on those tests. False assumptions are often made about people, based on spurious data.

Involvement of autistic people is often limited. If it’s by personal invitation it isn’t necessarily inclusive. If it requires people to put themselves forward, the same people tend to apply. If it’s done via autism charities, it excludes people who refuse to engage with them. It’s so important that people who take part in autistic involvement and inclusion initiatives represent the full diversity of the community, not a narrow subset. There must be more egalitarian ways of recruiting people, so that opportunities are opened up to everyone, some kind of clearing house of involvement opportunities. Involvement and inclusion impact on each other – we can’t ignore: “the interconnected nature of social categorisations such as race, class, and gender, regarded as creating overlapping and interdependent systems of discrimination or disadvantage” in other words: ‘intersectionality’.

If we’re not careful we keep on replicating the same old patterns of disadvantage and exclusion, even while we’re supposed to be working on being more inclusive. We mustn’t give anyone an excuse for not finding, and involving, a more representative group of autistic people. ‘I’ also stands for information, but that will have to wait until another day. Except to say: ‘Where is the life we have lost in living? Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?’ T.S. Eliot

@NortherlyRose

‘H’ hazards, harm, hope and human rights

A-Z of #autism from a personal #ActuallyAutistic perspective.

It feels like we’re in a hazardous place right now. Autism awareness raising has been going on for decades. There should be increased understanding and acceptance of autistic differences. But political hostility to disability breeds public intolerance and lack of sympathy. It’s difficult to explain why some things are so hard. Unless you’re autistic you may not quite get it. We can easily feel harangued if we can’t instantly work out how to do something. ‘More haste less speed’. I prefer to take my time, but everyone’s in such a hurry.

I find ways of doing things that work for me until someone comes along and says: “That’s not how I’d do it” There’s nothing wrong in doing things differently if the outcome’s alright and no harm’s done. But sometimes we’re forced into homogeneity simply for the sake of it. What they really mean is “do it my way”. I was tormented by a teacher in primary school who insisted on me forming my ‘S’s differently to how I’d originally been taught. She actually wrote this on my end of year school report. As a result of which I spent most of the summer holiday practising my handwriting. I was being pulled up for something inconsequential, and I knew it. Harassment can eat away at us, and erode our confidence.

Constantly being chided for doing things wrong can induce hesitancy. Why risk doing it at all if it’s going to get us into trouble? The same thing can happen if we’re not heard, or if what we say gets twisted and used against us. It’s safer not to say anything at all. Sometimes we become trapped in hostile situations. We may struggle to understand what has happened to us. It can feel like we’re being held hostage. In such situations it can be difficult to harness our strengths. We may simply want to hunker down and hide. Hopelessness can easily ensue. I’ve been trapped in jobs where I was bullied and harassed, and in relationships where I was abused. Sadly, this isn’t unusual for autistic people. Some of us even face detention, forcible treatment, and imprisonment. We’re an oppressed minority, with relatively few rights.

We can’t even rely on those who claim to be able to help us not to harm us. Autism interventions can be cruel and damaging. Insufficient understanding of autism, combined with lack of humanity, creates conditions where abuse is likely to occur. How could it be any different? It’s partly to do with faulty hypotheses and heuristic short cuts. There are so many misperceptions about #ActuallyAutistic experiences. And the focus of autism ‘interventions’ is nearly always some way of changing us, not the hostile environments or neurotypical ‘behaviours’ we’re damaged by.

I had a lovely anniversary yesterday, but I’ve got a social hangover today. Out of the ordinary things, like high days and holidays, disrupt my routine and can be overwhelming, but it seems churlish to complain. I’m 62 now, and I’m still not ‘habituated’ to celebrations.

Hyper-empathy often hurts me. This isn’t species specific, it embraces the whole world, and everything in it. I felt a pang of sadness for a fallen tree, blossoming profusely before it died. And my heart was broken by an imprisoned bird I saw while I was out walking. I wish I had broken the law and set it free. The feeling of helplessness was worst of all. I looked up bird wildlife law and discovered there was nothing I could do. I reflected on my hypocrisy, as someone who ate intensively farmed animals. I decided I could do something about that, and I have. I can’t say any more about the bird because I know it would upset other people. How strange, because I’m autistic I’m not supposed to have good Theory of Mind, or empathy am I? This is one of the differences between being seen as ‘highly sensitive’ and ‘autistic’. The ‘autism’ label carries stigma which can harm us.

Being autistic isn’t all about hazard and harm. There’s a happy, hopeful side to it too. My hobbies include classic cars and, to use contemporary terminology, we’re welcoming a new arrival. I’m not sure if my reluctance to haggle over prices when buying cars is anything to do with being autistic. The first time I bought a used car on my own (a deep purple VW Vento) I paid the price on the ticket. Then a colleague told me I was supposed to offer less than that and haggle. So I went back and explained that I hadn’t understood the convention, and they gave me some money off! Sometimes people appreciate an honest, sincere approach, rather than game playing. It’s hard to remain hopeful when people full of hubris are the ones riding high. But what living for 61 years tells me, is that if I can hang on long enough, it won’t always be like this. I saw the Thatcher government come and go.

I watched a heart-warming British film last year called ‘Blinded by the Light’ I highly recommend it. Especially if you like Bruce Springsteen. I’ve played his albums since I was at college in the late 70s. Having subtitles on reminded me just how wonderful the lyrics are. And to make it even more perfect the Pet Shop Boys also feature on the sound track. If you haven’t already seen the TV series ‘It’s a Sin’ that’s a must watch too. In the heyday of my early 20s I hung out with cinema colleagues who were mostly gay. I can’t tell you how much fun we had. In spite of horrific oppression my gay friends were full of humanity. None of the hate directed towards them ever took root. They weren’t consumed by the fear of being beaten up, or contracting AIDS. They lived with humour, hope and a real sense of pride in who they were.

Sometimes, even in the most unhappy of circumstances, there are moments of pure joy. They’re as fleeting as rainbows and just as beautiful. I hardly dare breathe for fear of losing them. I harvest tiny scraps of happiness every day and preserve them in photos and videos. Bruce Springsteen sang ‘everybody’s got a hungry heart’. But we all hunger for different things. Money, love, or fame may not motivate us; we may: ‘Hunger only for a taste of justice / Hunger only for a world of truth / Cause all that you have is your soul.’ (Joan Armatrading). Both songs describe someone struggling to reconcile ‘self’ with ‘heart’ and ‘soul’ in difficult circumstances. Autistic people know lots about having to overcome adversity and injustice, and the challenges of making relationships. We manage our own expectations.

Before I knew I was autistic I had multiple troublesome medical symptoms. Some related to sensory issues. Others were gastric problems. I was diagnosed with age-related conditions long before I should have been affected by them. No wonder I felt anxious about my health. It wasn’t clear that I experienced things differently, so I might have been labelled a hypochondriac. My occasional explosive emotional outbursts could have been misconstrued as histrionics. Women used to be diagnosed with hysteria. These days it’s ‘Personality Disorder’. I probably escaped getting the Personality Disorder label by managing my own Mental Health. My career profile as a social work academic, and NHS manager was a protective factor. GPs often treated me like an equal. I was someone they could identify, and empathise, with.

When I took on more humble employment, as a library assistant, I became just another anxious and depressed older female patient who had a partner with significant physical health issues. I slipped below the radar both as an undiagnosed autistic person, and as a hidden carer. Limited deference to social hierarchy is an autistic deficit I see as an advantage. As the Covid pandemic demonstrated, the supposed social value of someone’s work often bears no relation to its utility. But most people prioritise income and status, rather than fulfilment. Respect for another person should never depend on the job they do, or on their employment status. Structural inequalities, discrimination, and failure to make reasonable adjustments lock huge numbers of autistic people out of employment, and hold back our careers. Why should we be seen as less important because of this?

A year ago I wrote:  “human rights are being flouted but there’s no sense of urgency. EHRC hasn’t ruled out using enforcement powers if the Department of Health and Social Care in the UK fails to reduce the number of autistic people in inappropriate settings. ‘Ongoing discussions’ aren’t good enough. https://disabilitynewsservice.com/government-faces-legal-action-over-failure-to-stop-atu-atrocities/… “

So where are we another 12 months on? Autistic people are still experiencing horrific abuse and neglect in institutional settings; see Lindsey Bridges’ tragic account of what happened to her daughter Lauren (pictured below): ‘My autistic daughter died after eight months locked up in psychiatric unit’ – Mirror Online This blog by Oliver Lewis of Doughty Street Chambers highlights what’s happening to cause such inhumane treatment: https://www.lexology.com/library/detail.aspx?g=f9f96235-e3f7-4b55-8927-5796e43ccb7a

Autistic rights are human rights. Please consider signing this petition:  

https://www.change.org/p/my-daughters-death-should-have-been-prevented?utm_content=cl_sharecopy_32684216_en-GB%3A4&recruited_by_id=887cad60-b841-11ec-8497-5de278d46179&utm_source=share_petition&utm_medium=copylink&utm_campaign=psf_combo_share_initial&utm_term=petition_published_onboarding_0

@NortherlyRose

Lauren Bridges

‘G’ gatekeeping, gratitude and grief

An A-Z of #autism from a personal #ActuallyAutistic perspective

Last year I completed a research questionnaire about my experiences of autism assessment and post diagnostic support. Two years on from when I got my diagnosis, it was interesting to look back on what got me through the process.

I was supposed to seek referral via my GP, but I simply hadn’t got the energy.  For those of us who weren’t recognised as being autistic when we were younger, it’s often some kind of life crisis that generates the impetus to seek an autism assessment. But ironically, just when we need to be able to articulate our difficulties, we may struggle to do so. I managed to write a logical explanation of what was going on, listing a number of issues then concluding that all of these appeared to indicate I might be autistic. But when I got to my appointment I couldn’t persuade the GP to read the whole thing, which was 1.5 sides of A4.

With hindsight I should have sent this summary to the surgery beforehand, or left it behind. Instead we talked about the first issue on the list, and I scuttled off, feeling foolish. I decided this was a gatekeeping process I couldn’t even attempt to get through, I’d have to go round it. There was guidance for GPs on identifying autism in adults but, by any estimation, there were still significant numbers of undiagnosed autistic people in older age groups. Even now, another year on, it’s questionable to what extent this guidance has been fully assimilated. And if you get through the ‘gate’ you often find there’s a long waiting list.

In my case it was in everyone’s interests to grasp what was going on. I had recurring health concerns of indeterminate cause and I usually saw a different GP each visit. I wouldn’t like to count how much time this took up. Anxiety, depression and stress are common, so why would they look any further? They didn’t pick up on autism, or perimenopause. With hindsight both were clearly indicated. When I first thought that I might be autistic I was still feeling grouchy about the way my early onset Dupuytrens’s Disease was handled. I had to go round the GP to get preventive radiotherapy for that. No longer protected by the privilege of my professional status, I got the impression that I’d become an annoying, heart-sink, nuisance of a patient, and I abandoned the idea of getting any help from my GP.

I knew that I needed an autism diagnosis urgently. I couldn’t see how I would ever return to work without it. So I invested my savings in a private assessment, hoping to get my life back on track. An online group of autistic people provided fantastic guidance and support in the period leading up to this. I’m not at all gregarious, so I was surprised to slip effortlessly into the group. They were gentle and generous and never overwhelming. I didn’t have to agonise over what I said, or apologise for myself. And as well as talking about serious stuff, they made threads about things they loved, and I recognised that we shared some #AutisticJoy I’ve never been much of a gambler so I stacked the odds in my favour by doing plenty of research on autism assessors. That eventually led me to an autism assessment service in my area with lots of experience of assessing women. The fact that the clinicians also worked for the NHS gave me added confidence that my GP would accept a private assessment done by them.

Up until I got my autism diagnosis I was carrying around an awful lot of guilt. Once I knew I was autistic it explained a lot. I was still partly responsible for some of what had happened to me, but I could forgive myself. I’d been gullible, but I hadn’t got good defences against glibness or guile. Knowing who to trust has always been tricky for me. I want to believe that people are genuine. It hurts my heart if they’re not. The convincingness with which lies can be told was a lesson I learned as a police officer. But I’d still rather be caught out occasionally than become totally cynical.

We sometimes end up losing confidence because of gaslighting. This is where we’re psychologically manipulated into doubting our judgement and sometimes our sanity. Because our sensory, social, and communication traits tend to differ from other people’s, we can quite easily be undermined. Sometimes gaslighting happens subtly. It could be a non-verbal expression of surprise at something we’re saying. Just enough to make us feel insecure. It can also be much more overt. An outright denial that something ever happened, or that a particular conversation took place.

In a bullying situation we’re often in a no-win situation. Much of the goading we’re subjected to isn’t obvious to other people. We may even be ‘set up’ in a dishonest and cynical way. If we respond to the provocation we appear to be overreacting, or causing problems ourselves. For many of us previous experiences of bullying and abuse have left us very raw. It takes a lot of guts and grit to get ourselves out of these situations. And we rarely emerge completely unscathed. If we get in the way of ruthless people, we can end up being very badly hurt. Because I believe in truth and justice, I find it hard to accept that people are able to get away with doing some truly terrible things.

One of my favourite books is “Cheapjack”, Philip Allingham’s story of life on the road as a fortune teller, grafter, knocker, and mounted pitcher in the 1920s. He finds he’s blessed with “the gift of the gab” and becomes a bit of a grifter (chancer). Although quite different in character, I identify with his difficulty in making a living. Fitting in socially is just as challenging for me. I sometimes make gaffes or feel gauche. Straining to hear in background noise is hugely effortful and makes me feel grumpy after a while. Being stuck in crowded places for too long gives me the urge to escape and find some peace. People who are unaffected by noise, physical proximity of other people, and social demands struggle to see what the problem is. We only had 20 people at our wedding, including us, and even that felt quite crowded. There are so many expectations in social situations: look glamorous, join in with the gossip, and behave ‘graciously’ (which often means masking).

One of the strange things about my autism assessment was that the psychologist formed the impression I was very good at IT. I’m really interested in it, but that’s different from having advanced skills. I’m also fascinated by gadgets, gizmos and various kinds of geekery. One of my favourite shops as a child was the hardware store. And there’s nothing I like better these days than sorting through tools and assorted fixings in the workshop when my partner isn’t there. There’s something very gratifying about solving practical DIY problems. I’ve had a few disasters, like hammering a nail into a water pipe, but a wooden matchstick was a good temporary fix. When I first moved in with my partner, I was secretly proud to find that my electric drill was better than his! I often ‘ground’ myself by doing heavy work in the garden if I get stressed. I’ve been missing the physical side of this during the winter months. In the summer I carry weighty cans of water up and down the garden even though I’ve got a hose. Kneeling or sitting on the ground also has a very calming effect.

Tomorrow is the 14th anniversary of my wedding day. And 6 years ago (tomorrow evening) I was sitting by my partner’s bed in hospital. We’d been out for lunch, and he collapsed a few hours later with respiratory failure. It was several scary weeks before he was diagnosed with a rare disorder. In the following five weeks I had to phone 999 five times. My partner got taken to hospital in an ambulance three times, and he was given oxygen and nebulisers at home on the other occasions. He had two hospital admissions. The sixth time he collapsed we’d been told not to wait for the ambulance to arrive, so I put him on the car and drove him to the hospital myself.

My partner very nearly died that day. Driving to hospital as his breathing failed was agonising. Each red light we had to stop at cost us precious seconds. So much depended on getting him seen as soon as we arrived at A&E. I had to run and hammer on a door. When they checked his blood oxygen level it was only 82. He was kept in hospital for a week while I dashed to-and-fro, juggling work, looking after my dog, and visiting him.

I’ve always been thankful for small mercies, and my partner surviving this acute health crisis was a massive gift for both of us. I felt incredibly grateful. This was the catalyst for me to give up full time work, and we sold our house and relocated. I’m still processing everything that has happened since then. I was left with trauma, triggered during the first wave of the pandemic when streams of ambulances with sirens wailing sped along the main road all day. I tried not to panic, repeating “help is on its way” like a silent mantra. If I happened to be out on my own and an ambulance went past on a call, I’d find an excuse to phone home, just in case it was heading our way.

So far my partner and I have escaped Covid, for which I’m also hugely grateful. But the tragedy of the millions of lives lost and changed forever fills me with sorrow. Grief hasn’t fully hit home yet. I’m too busy getting on with practical things, and feeling angry about the government’s negligence, but I know the tears will come in time.

@NortherlyRose

The ‘F’ words

An A-Z of #autism, from a personal, #ActuallyAutistic perspective

What stands out to me about my childhood was how fascinated I was by everything. I often remained incredibly focused on activities for very long periods of time. Until I got my autism diagnosis, three years ago, it hadn’t occurred to me that this might be seen as in any way ‘dysfunctional’. Fascination and focus have been extremely functional for me in career terms. A lot of what I succeeded at relied on these qualities. They also helped me bond with people I loved. I’ve always preferred serious forms of ‘fun’ and I find deep conversation fulfilling. My ‘focus’ doesn’t seem ‘hyper’ to me. It’s just part of the way that I am.

Now I know that I’m autistic I feel like I should be part of a ‘fandom’, but I don’t think I am. I looked up the meaning, just to be sure: ‘A fandom is a subculture composed of fans characterized by a feeling of empathy and camaraderie with others who share a common interest.’ If I’m a fan of anything it’s equality, justice, and letting people be themselves. I know the world isn’t fair; I got told it all the time as a child. But in spite of everything life has taught me since, I’ve never completely lost faith in the possibility that it might become a better place.

I’ve never been keen on fakery, or any good at it. Applying fake tan, fake nails, or fake eyelashes just ended up in a mess. And being told to “fake it till you make it” never really worked for me. How are we supposed to fathom what’s real and what fake if we’re immersed in duplicity? Perhaps that’s why I like searching out ‘facts’. This is often the only way to prove or disprove something. Is it true, or is it false? But as anyone who has ever done autism screening tests knows, a lot lies in the unfathomable territory in between.

After I discovered I was autistic I wondered about the extent to which lack of foresight had made me do brave things. If I’d known the full consequences of standing up for what was right beforehand would I still have done it? I decided I would. Even when I knew there would be some kind of backlash I wasn’t fazed. The desire for justice gave me fortitude.

I just had a flashback to my teenage years when my feelings sometimes had such intensity they couldn’t be contained. In early childhood occasional loss of control wasn’t stigmatised. Becoming overwhelmed as a young adult felt dangerously different. While I can’t always avoid becoming overwhelmed I’ve put in place some failsafe mechanisms. It’s only discovering that I’m autistic, and exploring things from this angle, that’s allowed me to do this. I feel far more confident now that I know where my tipping point or fulcrum is.

Intense feelings that resulted from being bullied or abused did me a lot of damage in the course of my life. When the other party wouldn’t acknowledge any responsibility, my distress was hard to contain. I often ended up suppressing feelings of anguish instead. Once, instead of being held to account, my abuser was feted. Someone gave me a book on forgiveness shortly afterwards, which made me furious. I was fixated on getting a fair outcome, before realising it was futile. Eventually I moved on, and the feelings of frustration faded. But although I forgave I never forgot. As is frequently the case where abuse is repeated, I began to believe it might be my fault. And like many late diagnosed people I felt huge relief on discovering that I was autistic. This finally convinced me that I wasn’t to blame for all the bad things that had happened to me.

When I got my autism diagnosis I also felt like I’d been given a freedom pass. I could begin to be more ‘myself’ now. I’d started to feel like a failure because my attempts to ‘fix’ myself had been fruitless. It was liberating to discover this was just how I was supposed to be. I didn’t need fixing at all. How fortunate I felt to get to this point before it was too late, while I still had a future ahead of me. Fear of the past had been snapping at my heels for years. I knew it would catch up with me one day. Now I had faced up to it I could look forwards and back fearlessly.

‘Executive functioning’ isn’t a term I like much. ‘Executive’ summons up images of shiny black vinyl briefcases and pushy career climbers. ‘Functioning’ is reminiscent of bodily functions and unexciting things. But the concept explains a lot that’s different about me. Now I understand the way my mind works I can apply this in practical situations, like when I’m learning how to do something new, and I can explain it to other people too. In the right circumstances I am extremely flexible. It helps to understand the terms and conditions that apply.

Being autistic can be fabulous, fantastic, and full of joyfulness. This is the flip side of autism you only tend to hear about from #ActuallyAutistic people. If other people knew just how good it felt at times, they’d probably want to be autistic too. I often take breaks to go up onto the fell with my dog. Being out in the fresh air, far from anyone, is so freeing. All the flak and friction of everyday life falls away. It is sometimes freezing up there, but we don’t mind. We go out walking in all kinds of weather, fair and foul.

While I was out walking lots of ‘F’ words skimmed through my mind. I was thinking about friction, and how ‘rubbing people up the wrong way’ it isn’t necessarily our fault. Differences can make for strong bonds, like Velcro, but they can also be scratchy like sandpaper on wood. Being fierce is sometimes be a necessary defence against bullying and abuse. I sometimes fell foul of people because I expected them to be honest and kind. That brings to mind all the trauma responses that are ‘F’ words: fight, flight, freeze, flop, fawn. https://cotswoldcentrefortraumahealing.co.uk/how-ptsd-occurs/…  and the fact I should probably have told certain people to “Fuck off!”  

Counselling long before my autism diagnosis touched on issues that made me flinch, but then I faltered. I dug deep to try and make sense of things. There was something more fundamental I needed to find out about myself first. I was too far out all my life, and not waving but drowning. The more time that elapsed the harder it got. I was accumulating traumatic experiences, and becoming ever more fearful. But then fate intervened, and a former colleague reached out to me, telling me she’d just discovered she was autistic. And that’s how I finally found my way home.

My partner is both ‘family’. and ‘friend’ to me. It’s our wedding anniversary later this week. I try never to forget how fragile relationships are. And since finding out that I’m autistic I also have extended my family and found lots of neurokin. Shared experiences of being neurodivergent in a predominantly neurotypical world create strong bonds. There’s a comforting familiarity about people and places I know well, and my favourite foods. When all of these combine I know I’ll have a lovely time. During lockdown I recreated the cheese scones and coffee cake my family and I would have enjoyed in our local dog friendly cafe. I foraged in the cupboard for Russian Caravan tea too. I first drank this in the cafe, then my partner bought me a tea caddy full of it as a surprise.

Although I’m good at forensic detail if I’m working on a project, noticing what my partner likes isn’t quite as easy. The gifts I buy don’t him always hit the mark. My birth family are used to me giving them random presents. Sometimes I find something so fantastic I can’t resist buying it for everyone. One year they all got colour-changing illuminated umbrellas, in 2020 it was pulse oximeters.

There are so many fallacies about being autistic. In many ways I’m lucky not to have been exposed to these while I was growing up. My identity was formed free of unhelpful stereotypes. I reject and reframe these now. We live in a society where falsehood and fraud abound. If we’re fastidious about honesty we’re made to feel as if we’re somehow at fault. This seems so farcical. When it comes to integrity there’s nothing remotely ‘flawed’ about a typically ‘autistic’ way of functioning.   

Being autistic, I’m not supposed to be good at determining other people’s intentions, but I frequently find myself ‘fast forwarding’ to the end of a scenario and working out the outcome. And sometimes I have a really strong sense of intuition. One thing I’m not is fatalistic, there’s always something I can do to influence the future.

@NortherlyRose

‘E’ is for emancipation and empowerment

An A-Z of autism, from a personal, #ActuallyAutistic perspective

When I discovered I was autistic, just over three years ago, my emancipation began. It was enlightening to realise why so many aspects of life had been effortfully exhausting up until then. Even lovely, enjoyable events could completely drain me. At last, I understood why. I had often had to ‘get out of’ social events that I feared I’d find overwhelming. And employment in roles that required a lot of social interaction left me exhausted. This made me feel really pathetic as other people managed what I could not. But now I had an explanation for my exhaustion, I began to understand and operate within my limits.

A lot of damage is done when people think we should ‘toughen up’. It doesn’t work like that. Once I knew exposure to stressors wouldn’t lessen their effect, I avoided them as much as possible. Recognising that I could regulate my own energy levels and ‘top them up’ when necessary was another exciting epiphany. Like so many aspects of being autistic what drains or recharges energy is uniquely individual. This even relates to how an activity is done. I find building Lego ‘free form’ energising, whereas building models following instructions is exhausting. But this works in exactly the opposite way for some autistic people I know.

Since discovering I’m autistic I’ve gradually been emancipating myself from expectations about how things should be done. These pressures were external to begin with, but gradually became absorbed into the rules I set for myself. This was a self-imposed mental slavery from which none but myself could free my mind… (Bob Marley reference!).

I endured a lot in the 50 plus years when I didn’t know that I was autistic. After my diagnosis, as soon as circumstances permitted, I allowed myself some time and space to recover. This radical act of self-care felt like a kind of redemption. It was only possible because of relative privilege and the fact I could work fewer hours for a while. Lots of people don’t get any respite from full time employment or caring responsibilities while they come to terms with the existential shift involved in a late autism diagnosis.

Something I had to change was the way in which I had always required myself to ‘earn’ breaks by over working. There were times when everything felt too much, but I didn’t allow myself to step away until I had become utterly exhausted. When we compare ourselves to others we need to remember that we’re not them, and they’re not us.

This has a lot to do with developing our understanding of how being autistic impacts on us, and what we need to participate on equal terms. Education and employment don’t tend to be particularly emancipatory. In both spheres we’re often disadvantaged by inhospitable environments, and ways of doing things which don’t suit us at all.

Decades ago, I read a book by the sociologists Taylor & Cohen called ‘Escape Attempts: The Theory and Practice of Resistance to Everyday Life’. It was about how human beings avoid facing up to ‘paramount reality’, such as mortality, through distractions like hobbies, holidays, even sexual adventures.

Now I know that I’m autistic I can see how vital my various passions and interests have been in escaping from and surviving reality. Sometimes I literally want to run away. The term ‘elopement’, used in the USA, makes this sound romantic, but I get driven to it by desperation, like a fugitive. That’s probably why I became a campervan enthusiast. When I am in the campervan I have my own little ecosystem, and it’s even better for being mobile. I can seek out environments that suit me. As soon as Covid and work commitments allow I’ll be going on some long road trips again.

There’s no doubt that exercise makes me feel better, but motivating myself to do it can be hard sometimes. I get hot really easily so exercising inside doesn’t suit me, I much prefer being outdoors. I love walking, and if I ever struggle to get going my dog takes charge.

All three of the dogs I’ve lived with over the last 20 years have been insistent personal trainers. Waffle is always ready for a walk and won’t take no for an answer. Whether we’re up on the hills, or down by the sea, exertion and exhilaration energise me. Being close to nature calms my emotions, and settles my mind.

It’s partly to do with having plenty of space and not feeling encroached upon. In pre-Covid times, when social distancing wasn’t a thing, I found it difficult if someone sat next to me on the train. It’s hard to explain. Even their coat touching me could cause acute discomfort. My reactions to touch, noise, or smell sometimes seem ‘extreme’ to other people. That’s because I don’t feel, hear, or smell things the way they do. In the absence of an understanding of autistic sensitivity they might frame my response as ‘excessive’. But they’re not experiencing things from my sensory perspective.  

As a child I found it strange how many perfectly natural things were considered ‘embarrassing’. We had to use code rather than the actual words. Causing confusion was better than embarrassment. Telling someone they were ‘flying low’ meant that their trouser zip was undone. Even now, in more relaxed times, there’s an embargo on being too open about certain topics, or ‘over-sharing’.

Emotional expressiveness is a double-edged sword for me. I can be quite excitable and ‘too much’ for other people, but I have to make an effort so my vocal expression doesn’t sound too ‘flat’. Equating insufficient vocal modulation with something being boring is a commonly held prejudice. Learning which words to inflect was very tricky, as was injecting just the right amount of energy into speech. And I had to practise facial expressions in the mirror, as I couldn’t always tell what my face was doing. Knowing when to laugh, and when not to, was a deeply mysterious art. It’s easy to get it wrong when it’s difficult to interpret what’s actually going on. Self-conscious, effortful communication becomes exhausting.

‘Enthusiastic’ crops up a lot in my school reports. I can develop ‘enthusiasm’ for almost any subject, once I start to look into it. Acquiring knowledge through research is a source of great enjoyment for me. Like many autistic people I’m a natural, fact-finding, autodidact.

I loved the motto of my second university ‘Do Different’. Being exceptional (not ‘gifted and talented’, just differing from the norm) seemed rather desirable. That was before I discovered how hard it is to get some people to ‘make an exception’ for you if your needs vary. It’s not just about how our needs are responded to, it’s about how we are allowed to communicate. I caused “consternation” at an academic job interview by using visual images in my presentation. This was at the ‘Do Different’ university. It clearly wasn’t meant literally!

Finding employment where I could play to my strengths, while doing something useful for society, summed up my career ambition. Lots of jobs fitted this broad remit, but involved open plan working. I was born a bit too late for individual offices and a bit too soon for WFH. It’s quite unusual to find an enabling physical and emotional environment at work, especially if you happen to be autistic. Career survival often depends on putting up with sensory and psychological stress, or getting to be senior enough to do something about it.

Overstimulation from working in open plan settings can trigger a meltdown. And if my senses get too overloaded (sight, hearing, smell) my executive function switches off. The more people there are, and the more crowded it gets, the more difficult it is to cope with.

Before I realised I was autistic I had difficulty hearing on the phone in significant background noise. It was assumed that this was due to mild high frequency age-related hearing loss. Now I know that auditory processing issues make it difficult for me to separate several different strands of conversation occurring simultaneously.  

When I was diagnosed with hearing loss I learned useful ‘hearing tactics’. Sitting in the ‘best’ place to hear, using clarifying questions, asking for background music to be turned down, or off. It involved being assertive, and it also depended on getting cooperation from others. I was shocked by how difficult it was. One of the worst things is refusal to repeat what was said with a dismissive “doesn’t matter”. Believe me, it does! Autistic people sometimes experience the same kind of micro-aggressions and get frustrated by being excluded from conversations.

If we find forms of communication that work for us, including augmentative, alternative methods, it becomes possible to say what we want. We’re no longer forced to struggle along in conversational confusion. We can be autistically, authentically eloquent. It’s empowering. I’m part of an #ActuallyAutistic resistance movement. We stand against research that harms or seeks to eliminate autistic people. We object to treatments designed to eradicate or suppress autistic traits. And we encourage each other to feel pride in our identity.

@NortherlyRose

‘D’ for disaster!

An A-Z of autism, from a personal, #ActuallyAutistic perspective.

A lot of the D words used about autism are potentially damaging. Deficit, disorder, developmental delay, dangerous, disaster. We’re encouraged to feel a sense of despondency, to see ourselves as damaged goods. Why else would people research ways to ‘prevent’ or ‘cure’ autism?

The diagnostic criteria set out in DSM-5 evoke despair: ‘Deficits in social-emotional reciprocity.’ ‘Deficits in non-verbal communicative behaviours.’ ‘Deficits in developing and maintaining relationships.’ Replace ‘deficits’ with ‘differences’ and it transforms things.

The way we define autism determines how other people see us, and how we see ourselves. It matters a great deal. Changing the discourse isn’t just semantics. That’s why Damian Milton’s work on ‘Double Empathy’ is so important. Recognising the duality of processes and relationships disrupts the dominant deficit-based model in which everything is our fault.  

A lot of the literature on autism encourages us (and those who love us) to feel dread. Being diagnosed autistic can feel deterministic. So many difficulties are described. It suggests a drab, dreary, desperate life lies ahead. Not one filled with desire, delight and the fulfilment of dreams.

One of the advantages of a very late diagnosis is that I’d already debunked many autism myths for myself. I knew for a fact that autistic people could have successful careers, drive vehicles, be in long-term relationships, have their own home, and become parents. Reading some of the autism literature would this kind of thing seem very doubtful.   

Getting a deficit-based diagnosis at such an advanced age induced feelings of doubt. I seemed to have achieved things that shouldn’t have been technically possible. Was I really ‘properly’ autistic? I gradually recognised how many aspects of my life had been influenced by being autistic, and that it was partly autistic determination that had helped me to succeed in various roles, despite the difficulties I’d encountered.

I’d felt despair for extended periods. I knew it wasn’t depression. It was somehow different. But I hadn’t had to cope with extreme disadvantage, because I had a safety net of family support.  Without this, the consequences of my life unravelling would have been far more devastating.   

There’s no doubt that discovering I was autistic aged 58 was highly disruptive. It has changed the dynamics of my relationships with other people, as well as the way I see myself. Autism is sometimes seen like a red warning flag, whereas for me being autistic is all about pride in my identity.

Sometimes disruption is the only way to make change happen though, and it can be a positive thing too. In the case of the ‘autism industry’, big autism charities (and some of the smaller ones) need to stop, take a look at what they’re doing, and start over. But they won’t, as long as the money keeps rolling in.

In many ways I’m thankful that my working life became very difficult around the time of my autism assessment. My career was so important to me that I’d never have given it up unless I had to. But being deeply immersed in work all the time was a distraction from exploring my ‘self’. Getting derailed, breaking down, and burning out, gave me the space I needed to get in touch with my feelings and work out who I really was.

I bought a Swatch watch with a quote from Dante’s Inferno on its face some years ago. Seamus Heaney’s translation of it reads:

‘In the middle of the journey of our life I found myself astray….’

Dante

This quotation really spoke to me. In the middle of my life, I had definitely lost my way. The quote continues:

‘I found myself astray in a dark wood

where the straight road had been lost sight of.

How hard it is to say what it was like in the thick of thickets,

in a wood so dense and gnarled the very thought of it renews my panic.

It is bitter almost as death itself is bitter.

But to rehearse the good it also brought me

I will speak about the other things I saw there.

How I got into it I cannot clearly say

for I was moving like a sleepwalker

the moment I stepped out of the right way

Then I sensed a quiet influence settling into those depths in me

that had been rocked and pitifully

troubled all night long

And as a survivor gasping on the sand

turns his head back to study in a daze

the dangerous combers, so my mind

Turned back, although it was reeling forward,

back to inspect a pass that had proved fatal

heretofore to everyone who entered.’

Dante

Discovering I was autistic delivered me from deep despair. Exhausted as I was by then, I gradually started to recover:

‘As little flowers, which the chill of night has bent and huddled,

when the white sun strikes, grow straight and open fully on their stems,

so did I, too…’

Dante

I still have occasional moments of despondency, particularly when autistic people’s needs are dismissed, or we’re being discriminated against in some way. But this makes me even more determined to fight on for autistic equality, justice, and rights, not just here in the UK, but globally.

I deliberate a lot about being autistic, as you can tell from what I write. My autism diagnosis is narrowly descriptive, not definitive. It’s based on a deficit-based medical model. There’s so much more to being me. I’m on a journey of self-discovery.

@NortherlyRose