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.