I Know I’m Autistic So Why Get Assessed?

I Know I’m Autistic So Why Get Assessed?

“You mask it very well but you’re definitely autistic.”

This, essentially, was the outcome of my autism assessment yesterday. So no surprise to me or anybody who knows me. The obvious question is, “Why choose to get assessed at all when you’ve known you’re autistic for more than 10 years now?”

The answer lies, as so often, in what employers and medical professionals will accept as authoritative. In this case, my own word based on extensive reading, analysis and consultation carries less weight than that of a duly-designated medical specialist who had a couple of hours to review the results of a selection of written tests and speak to me about my experiences.

My pursuit of this assessment was for a personal reason: it was to provide evidence of the validity of my claim to need assistance and adjustments in my working environment to reduce the obstacles I encounter. I don’t believe it should be a requirement for access to such accommodations. Maybe that makes me a hypocrite for bowing to the demands of a system I feel is unfairly exclusive.

It was still a relief to hear their verdict: I won’t lie about that. It’s always reassuring when somebody else sees the same things you’ve seen and comes to the same conclusion. I would prefer if none of this were necessary, that appropriate accommodations would be provided as a matter of course based on a person’s own assessment and declaration of their needs.

In fact that’s pretty much my situation right now, stating my own needs, except that this magical piece of paper imbues my words with sufficient borrowed gravitas to pass the gatekeepers. In simple terms: if I wave this document in front of the people I need to convince of my needs, it dispels their doubts that I am speaking honestly.

The thing is, it actually doesn’t need a professional to get involved to identify when a person is autistic. Indeed, in many cases it’s not a professional who first recognises the signs. I knew I was autistic for all those years leading up to a professional agreeing with my own assessment. To me, and to the overwhelming majority of the people around me, my own assessment was perfectly valid.

I didn’t seek or need the outcome of my clinical assessment to validate my own knowledge that I’m autistic, and I stand by all the other autistics who know for themselves. Self assessment (also called self diagnosis, but I’m not keen on the word ‘diagnosis’ with its implication of illness) is as valid as clinical assessment, and it’s time it was fully and widely recognised as such.

It’s Hard to be Different

It’s Hard to be Different

At school I would watch as the other kids played
Left out on the edges and that's where I stayed
Forever the outcast, forever afraid
It's hard to be different, take it from me
It's hard to be different, take it from me
The skills I was taught served me poorly in life
Like holding my tongue, the obedient wife
But never a word about facing a knife
Learning compliance was no good to me
Learning compliance was no good to me
I've taken the beatings, got bruised blue and black
Scarred deep in my mind after verbal attack
So well did I learn that you never fight back
Obeying their rules didn't go well for me
Obeying their rules didn't go well for me
The ones who oppress us stand guard at the gates
I knelt and I begged just for scraps from their plates
The loss of my dignity painfully grates
The autism industry don't speak for me
The autism industry don't speak for me
I've heard about heroes, I've listened to songs
Of fighting injustice and righting the wrongs
But my heart it won't heal until it belongs
Autistic culture is something to see
Autistic culture is somewhere to be
If you want to help your people then stand next to me
If you want to help our people then stand up with me

(To the tune of Working Class Hero)

A Bed of Roses Still Has Thorns – On #Autism and Cures

A Bed of Roses Still Has Thorns – On #Autism and Cures

As an autistic woman, would I want to be cured?

It’s a valid question, and one that I believe is worth exploring in depth because its simplicity hides a host of unspoken assumptions, assumptions that differ depending on who you ask.

What Is Autism?

Autism is not just a medical diagnosis based on a set of clinical observations, even though that’s exactly how it’s defined in manuals such as DSM and ICD. Those are just the outward tell-tale signs of a brain that works a bit differently from most.

I don’t pretend to understand how my brain works or how an autistic brain is different from a non-autistic one: I don’t know what exactly makes somebody autistic. I do know I can relate my experiences very strongly to those of many of the autistic people I know personally. I know that almost all my friends are autistic and that I have more trouble establishing close relationships with non-autistics.

One of the reasons that an autistic culture has arisen, especially since the growth of the internet made long-distance and alternative–not face to face and largely written–communication so much easier, cheaper and faster, is that so many of us relate to each other on levels that we can’t reach with non-autistics: this is a consequence of the double-empathy problem where each group has difficulty relating to the other.

Where you have a culture, you have an identity associated with it. So you often find autistic people speak about autism as an identity–a cultural identity–much more than as a condition or diagnosis. This phenomenon of autism as cultural identity is why so many of us feel a strong preference for referring to ourselves as autistic and not “people with autism”.

Neurodiversity

The concept of neurodiversity is strongly associated with, although by definition not restricted to, autism. In simple terms it is the idea that autism, ADHD and other neurological differences are all part of the normal variation of human brains. It’s the idea that these are differences, not faults.

That’s not to say that we don’t recognise the ways in which our differences can present obstacles in daily life. Some of these can be disabling, especially in a world that is largely shaped by and for the neurotypical majority.

The problem with the medical definition and view of autism is that it’s entirely based on deficits, on aspects that are seen as inferior when compared to the predominant neurotype. It’s like the old saying, “When all you have is a hammer the whole world looks like a nail”: when you always frame neurodivergence as a collection of faults, you only see it as something to be fixed.

Support Needs versus Quality of Life

So we come to one of the key points: many neurodivergent people have non-trivial support needs in their everyday lives. Many of us need assistance in one form or another, whether it’s with communication, mobility, tasks such as washing, dressing or eating.

Many people who don’t require such support would equate that with a poor quality of life but that’s not true. They assume that needing assistance means you lose autonomy, the ability and right to make decisions about things that affect you. The opposite can be true with the right support: it can enable someone to do things that they would otherwise be unable to.

Requiring support, even for basic tasks and activities, does not mean having a poor quality of life. Encountering prejudices and having support restricted or denied, on the other hand, does severely reduce the fulfilment in one’s life. There’s no scale from having a good life at one end to having high support needs at the other: it’s possible to have both.

Cure = Reducing Support, not Needs

This idea that requiring more assistance and support means that one has a worse life–because that’s the assumption made by people who don’t have such needs–is a key motivation behind much of the search for autism cures. There’s certainly money to be made for the corporations and medical professionals offering these treatments too, which is always a consideration.

The problem with such an approach is that it largely ignores the needs of people today, and the cure agenda is pursued instead of investing in support services. It’s a “jam tomorrow” scenario, made worse by the priority being which “jam” they feel will offer the best return on investment and not which one those receiving it might be asking for.

There is a history of research priorities being set without the input of those the studies are focused on, leading to unmet needs and a growing disenchantment with and mistrust of the medical establishment.

When this happens against a backdrop of cuts to social services and increasing barriers to access what remains, it’s no wonder that there’s considerable scepticism among autistics whenever some new prospective cure is announced. Indeed there’s growing anger that our priorities are routinely ignored or overridden.

Cure = Eradication

Some treatments are aimed at reducing or eliminating already-present aspects of autism–things like “improving” our social interactions or our ability to act “normal”. Others, particularly involving genetic manipulation, are intended to prevent autistic traits arising at all.

When we hear talk like this about “curing” autism it comes across as a desire to eliminate us as a people, destroy our culture, remove the core part of our identity. Eradicate that which makes us who we are, and so eradicate us. This is why there’s such strong opposition from autistic people to research into what from our point of view is no different from eugenics or genocide.

Would I Want To be Cured?

After all that, back to the question I started with. For me, being autistic is not something I can separate from how I see myself: it’s an intrinsic part of me, one of the aspects that makes me uniquely me. Without it I would not be me.

I feel at home in autistic culture, among people I can relate to and identify with. My people.

Anything that threatened to break the affinity I feel, that risked severing my feeling of connection to these people, would feel like it threatened my very life. Maybe even worse than that, because I would go on, cut adrift from the tribe that feels like home to me and I would be keenly aware of the loss.

But there are things I struggle with. I sometimes become overwhelmed by emotions and/or sensations and unable to express myself verbally, either in speech or even writing. I misunderstand people–neurotypical people especially–because I expect them to respond the way I or another autistic would. I have sensory processing and executive dysfunction.

Would I like to never again feel overwhelmed and disoriented by complex noise or too-bright lighting? Would I like to be able to remember what I came into a room looking for? Would I like to be able to keep my apartment organised?

These are areas where I want assistance. If there was a way to “fix” them while leaving everything else intact would I be interested? Maybe, but I’d need to be sure the cure wouldn’t have unintended consequences: side-effects.

So there’s my answer: a definite maybe, if it’s not too much trouble and it wouldn’t do anything I didn’t want it to. I’ll take help if it’s going, I might consider limited treatments, but I would never want to not be autistic. I don’t want to be “cured” because although I accept that I’m disabled, I don’t see myself as broken.

Oversensitive: Sensory Processing Difficulties

Oversensitive: Sensory Processing Difficulties

Photograph of the author at work, smiling, and wearing tinted eye glasses and headphones

Introduction

The human body has several senses. There are the well-known ones: touch, sight, hearing, smell, and taste. And then there are proprioception (the awareness of our body in relation to our surroundings), interoception (the body’s internal state: things such as being hot or cold, thirsty, hungry, in discomfort or pain), and the vestibular system (concerned with balance).

Neurodivergent people often experience sensory input differently to the neurotypical majority. Some of us feel certain sensations more strongly: those aspects of our sensory systems are over-responsive. Others have under-responsive senses and experience things less strongly.

In general, those who have under-responsive senses often seek additional sensory stimulation, while those whose senses are over-responsive tend to avoid situations and activities that provide greater sensory input.

My body over responds to input from a number of my senses: touch, sight, sound, and balance–these kinds of sensations can cause too much input for my brain to process and result in a negative reaction such as stress, panic, pain or disorientation.

Taking the senses one by one, these are the kinds of effect this has on me.

Touch

  • I dislike getting anything on my hands: dirt, oil, paint, food, water, etc. and get the urge to wash or wipe them immediately. I avoid touching anything I perceive as dirty or otherwise likely to leave a residue.
  • I keep a distance from other people and try to avoid crowded environments so that I won’t be touched inadvertently or unexpectedly. I react to unexpected touch by recoiling strongly, sometimes enough to cause me injury.
  • Light touch is uncomfortable
  • I favour clothing with soft, stretchy materials that don’t bunch, scratch or chafe.
  • I hated having my hair combed, my nails trimmed, and my teeth brushed as a child. I still find these activities uncomfortable.

Vision

  • I find bright lights or changes in the intensity of lighting very uncomfortable.
  • Flickering or flashing lights are uncomfortable and very distracting, as is a lot of motion in my field of vision.
  • I often close my eyes or try to find a dark environment as a response to discomfort.

Hearing

  • Unexpected sounds make me anxious.
  • Exposure to constant noise exhausts me, even if it’s at low levels (such as the sound of ventilation fans) because I find it very difficult to filter it out. Noise cancelling headphones are brilliant!
  • Loud noises like fire alarms are painful and can make me disoriented. I have ear defenders close at hand in my workplace because the alarm noise affects my ability to evacuate the building. Hand driers in bathrooms are another source of discomfort: I avoid using the noisy ones.
  • I struggle to pick out sounds such as voices from background noise, making it difficult to hold conversations unless I’m in a quiet environment. The effort of trying to discern words can be exhausting and lead to disorientation.
  • I can cope with structured, predictable sound like music that I know even if it’s loud. I think this is because it doesn’t trigger anxiety and my brain doesn’t need to work hard: the cognitive load remains low.

Vestibular

  • I get motion sick very easily if I don’t have an external visual frame of reference such as the horizon. Boats are especially bad and I’ve sat out on deck in cold, dark and rain to avoid becoming seasick.
  • Unstable or uncertain footing makes me nervous about falling.
  • I hold the handrail when going up or down stairs, and move carefully to make sure I don’t fall.
  • I become very anxious when lifted up bodily so my feet leave the ground.
  • I panic if my chair tilts backwards when I lean back.
  • I dislike spinning and rapidly become dizzy.
  • I lose my balance if I tilt my head back and look upwards.
  • I don’t like to close my eyes when standing or walking because I feel unsteady on my feet when I can’t see my surroundings.

Smell

  • I can’t stand certain strong odours. As a child I would hold my breath going through the perfume section of department stores, and even today I ran through the Duty Free shopping area of an airport terminal because the strong smells were distressing.
  • I don’t wear perfume and find it uncomfortable to be exposed to its powerful scents. This can be a major problem on public transport and in other enclosed public spaces, so I avoid such environments as much as possible.
  • Other strong smells like food or many “natural” odours pose no problem to me at all, leading me to suspect my sensitivity might be to volatile solvents frequently found in perfumes rather than the scents themselves.

Interoception

This is kind of my odd-one-out because, unlike the other senses, my interoceptive sense is under-responsive. This means that I’m often unaware of the state of my own body.

  • I’m not very aware of feelings of hunger or thirst. In particular, I can become dehydrated to the point of headaches and visual disturbances before I realise I’m thirsty.
  • I can’t tell when I’ve eaten enough, and unless I restrict my portion size I continue to eat to the point of being physically full and in discomfort.
  • I’m not always aware of physical discomfort or pain, especially when caused by poor posture when sitting or standing.

Overall

What I’ve described are the effects I experience. While most of these are fairly typical for a person with over-responsive sensory systems, not everybody will experience all of them and some will experience effects I don’t get myself.

There are also many people whose senses are under-responsive, and in those cases their reactions can be very different from somebody who is over-responsive. It’s also not uncommon to have different degrees of sensitivity across different senses.

Because many of my senses are over-responsive I experience more situations where my environment can overwhelm me, and being overstimulated in one sense can make the others even more sensitive. I’ve learned to avoid these situations as much as I can because avoidance is one of the most effective strategies, but that’s not always possible. This is where aids such as ear defenders and tinted glasses are valuable.

Since all this happens in the brain, other things have an impact on it day-to-day including overall physical and mental health, stress levels, and getting enough sleep. It’s not always an easy condition to manage, and does at times affect my ability to work and do everyday activities such as shopping. It can be disabling, which is why accommodations and sensory aids are important.

That Was The Year That Was—2018 in Review

That Was The Year That Was—2018 in Review

The past twelve months seem to have passed quickly as I sit here looking back over them. I’ve been places both real and figurative, seen amazing sights and met some lovely people. There have been highs I could scarcely have dreamed of, and lows I would rather not dwell on.

In January I travelled to Sweden for the first time to visit my daughter who had moved there the previous summer. We had a lovely time hanging out together and I got to indulge my tea habit.

Leaving her to return home again was a bit of a wrench, but then later in January I went to my first spider show (SEAS–South East Arachnid Show) with dear friends Gemma and Dom. I didn’t indulge myself but did help a certain person acquire four tarantulas.

Fast forward to March and, wearing my Autistic Inclusive Meets director hat, a trip to Parliament with Emma for the launch of the Westminster Commission on Autism’s report into harmful fake autism cures. As you can see we were completely in awe of our surroundings and took it all very seriously.

May brought a visit to the British Tarantula Society’s annual show in Warwickshire and the acquisition of my first tarantula. Not bad for a woman who used to be afraid to get into bed if she saw a spider on the bedroom wall or ceiling.

By the end of June I was counting down days, eagerly anticipating my upcoming visit to Canada and the opportunity to meet and hang out with my beloved friend Patricia in person.

We had an amazing time over the two weeks I was there, getting to travel across the Maritime provinces, visit some wonderful places and meet lovely fellow-neurodivergent people. I completely fell in love with Canada.

It almost broke my heart to leave and come back home: how I cried. But I’d not even been back two days when my daughter arrived from Sweden for a visit with her boyfriend. It was fantastic seeing her again and we got to do some fun things together including visits to Stonehenge and the Natural History Museum.

Unfortunately, after her visit burnout hit me hard along with PTSD from the relationship I talked about in my previous post: I ended up being off work for the best part of two months before starting to recover towards the end of the year. It was a difficult time with several episodes of self-harm.

In the middle of September, while I was off work, I got to visit Stroud and meet up with my dear friend Sonia before going to see the fabulous play The Duck by Rhi Lloyd-Williams. (Note to readers: the play will be touring at some point in 2019 and I highly recommend going to see it.)

I’d been having something of a midlife crisis in the midst of my mental illness, and realised that I needed to make space in my life for artistic expression. I bought myself a copy of Neil Gaiman’s Art Matters, illustrated by Chris Riddell, and found it truly inspiring.

It didn’t hurt one bit to get these encouraging words from Neil himself either. Feeling inspired, I got an additional boost when invited to be part of the launch event for close friend Jon Adams’ charity, Flow Observatorium.

I was also deeply honoured when Sonia asked if I would read a message from her since she wouldn’t be able to attend. That month, September, also saw me turn forty five and was a turning point in my mental illness as I began to recover.

October saw me teaming up with Gemma to welcome the newest regeneration of our favourite Time Lord: we were both agreed that we loved the Thirteenth Doctor as portrayed by Jodie Whittaker.

Less than a week later and I was meeting another lovely friend, Naomi, in a field down in Sussex for the re-enactment of the Battle of Hastings at Battle Abbey. Great day out that would be hard to top.

Having said that, November excelled itself as I went to the O2 Arena to see Florence + The Machine live in concert. Wow! Utterly breathtaking, and an experience I won’t forget in a hurry. The atmosphere was so positive that I was buzzing for days.

Rounding off the month, I got to visit Tate Modern and experience some exceptional works of modern art, including some de Stijl paintings by van Doesburg and Mondrian, a whole room of Mark Rothko, and so much more. That day was completed wonderfully with a meal in the company of Emma and Amy, fellow directors of AIM.

Into December now, as a couple of weeks later I was back up in London for a meeting with a PhD research student from France, following which I bumped into dear friend Jon. We had a good chat before I left to explore the National Gallery, just off Trafalgar Square.

It’s no exaggeration to say I was in heaven! Over the course of nearly four hours I wandered the galleries, lost in a kind of rapture. It’s hard to single out individual works, but the four van Gogh paintings on display were beyond comparison! I stood in front of each of them, examining the brushwork, feeling the emotion laid onto the canvas along with the oil paint.

And so at last, with no little conceit, I finish up my review of the year by placing a painting of my own alongside the genius of Vincent. Not for comparison, not for any other reason than this: 2018 was the year I finally felt comfortable calling myself an artist. And that makes it a good year.

When Care is Really Control

When Care is Really Control

As an autistic woman myself, I know I’m not alone in seeking the security of a stable, dependable home life. I sucked badly at taking care of myself when I first lived away from home at university: I was intimidated by communal cooking and laundry areas.

The pattern repeated when I moved away for work: my awful, almost-non-existent organisational skills left me struggling with all manner of domestic tasks from my finances to making sure I had food and clean clothes. I was pretty much living off take-aways when I met someone.

In my first committed relationship we set up home together, had a daughter and got married so quickly that it’s a bit of a blur in my memories. With hindsight, we weren’t well-matched and the marriage didn’t last. I think we both had breakdowns after it imploded and we went our separate ways.

Within only a few months I found myself in another relationship. You might be thinking “rebound”. Looking back, I am thinking “rebound”. But at the time I blithely dismissed concerns that I was rushing headlong into things (again) and declared that it was true love.

The marriage (for that’s what we did in our second year together) appeared to start well. Despite my partner’s occasional displays of drunken aggression, sometimes in public, we got along pretty well. Or so I thought, but in reality I was adapting to minimise the friction.

Over time I let my spouse manage all the household finances, cook the meals, choose how the home was decorated. In return I got the illusion of security and stability. I say illusion because there was always the implicit threat of being thrown out, always some reason why I couldn’t become a joint tenant.

My ties to family and friends weakened as I gradually lost contact, being made to feel guilty for spending any time with them rather than my spouse. When we went out I’d often be left sat on my own while they went around socialising, while if I ever did the same I got accused of spending no time with them.

I became well-versed in my failings due to having them pointed out regularly: how I couldn’t cope on my own, and how I’d have ended up in an awful mess if it hadn’t been for my spouse. I actually felt grateful for it, for their control over my life, making order out of the chaos.

On a number of occasions they got drunkenly argumentative and locked me out, only to be extra nice the next day after allowing me back in. A couple of times I tried to leave, spent a day or two sofa-surfing at mutual friends’ places before giving in to the pleas for me to return, promising it would be different.

A couple of times I tried to kill myself, washing down handfuls of pills with whisky or other alcohol, but I always ended up vomiting them out and surviving.

By the end I was spending a lot of time in a little box room on my own. When I felt especially threatened I would wedge a chair under the door handle to prevent my spouse from getting in, and I’d cower in there while they hammered on the door and shouted threats.

All this and I still couldn’t leave. I no longer believed I was being cared for, but having any home seemed preferable to the unknown chaos of life on my own. There were just so many things I would have to do to get away that trying to think about it overwhelmed me.

I was in mental health crisis, on medication, unable to work and suffering frequent panic attacks. My counsellor helped by guiding me through the process of organising my thoughts into an exit plan. My daughter helped me find a place to live, and assisted with setting up home there.

Things aren’t perfect, even more than a year and a half later. The emotional abuse over those years has seriously damaged my mental health and I have complex PTSD, frequent suicidal thoughts, and a bunch of new scars from self-harm.

But I also have support, and perhaps more importantly I have belief in myself. I know now that I can survive life on my own. That’s not to say I don’t struggle, and keeping on top of bills and household chores will always be difficult.

It’s tempting to let others manage aspects of your life in the belief that they will care for you. But all too often this dependency forms the basis of control, of abuse, and that is far from healthy. It took me a long time to recognise the signs, and I let my judgement be swayed by the person who was abusing me because they claimed to be looking after me and had undermined my confidence in myself: I believed their words over the evidence of my own eyes.

We autistic people are particularly at risk from those who would take advantage of us, abuse the trust we place in them and end up harming us. We become dependent on carers. Look out for warning signs like these:

  • If you find yourself making excuses for your partner or carer when others question the way they treat you.
  • If they regularly act aggressively towards you, shout at you, or otherwise make you feel scared of them, make you afraid to challenge them.
  • If they often tell you what you can or can’t do.
  • If they alternate between being cruel or nasty towards you, and apologising and being extra nice for a while.
  • If you frequently get criticised, teased or called hurtful names: if they keep finding fault with things you do or say.
  • If they make you feel guilty for spending time with other people, or make you feel bad if you interact with others online: if they isolate you from people you used to have around you.
  • If you aren’t allowed access to your own money, or don’t have a say in things you buy or do.