autism

The Gift of Neurodivergent Diagnosis

/ Sarah K Reece / 2 Comments

Like many late diagnosed neurodivergent people, I’ve had a hellish run with episodes of severe exhaustion and burnout. Not understanding how I function, what supports me and where my limits are, seeing and being seen only for my capacity with my difficulties all unnamed and invisible created a horrifying cycle of productivity and crash. Diagnosed as gifted in my teens but not with ASD and ADHD until my 30’s created a horrible environment of insanely high expectations and invisible vulnerabilities. Every few years I’ve been diagnosed with exhaustion as my mind and body run out. I’ve endured brutal unexplainable immune system crashes where I’ve simultaneously contracted infections in multiple areas. My other conditions such as fibromyalgia and PMDD flare to unmanageable levels. I fall off the edge of my world and I never see it coming. Trying to stay alive takes all my energy and every resource I have. I lose everything I’ve built and have to start from scratch, and I never have a good reason why.

This is the not the future people envision for their children when they say they don’t want to burden them with a label. Diagnosis has been complicated for me, painful, isolating, relieving, hopeful. Since I’ve been diagnosed with Autism and ADHD 5 years ago, I’ve never experienced that level of exhaustion again.

I’ve learned that I’m risk blind and need to pay attention to the anxiety of those around me when I’m flying too close to the sun. I have explanations for what used to be confusing and humiliating limitations like not being able to listen to voice mail or reply to emails. I hate myself less. I pace myself better. I let go of a lot of things. I’m beginning to understand what I need to be able to show up and do the things that are important to me.

The labels come with a price of course. The diagnoses subject me to misunderstandings and low expectations. But the alternative was devastating. I’ve pursued diagnoses for my loved ones, hoping to spare them what I’ve suffered, and aware that I have no idea what it’s like to have been diagnosed young, and that they may have both benefits and costs I can’t relate to.

Here is a journal extract I wrote in an episode of exhaustion a number of years ago:

“Finding words for experiences that have no language for them, finding ways to string life back into stories, into a narrative that starts and proceeds and finishes, when my world has unstrung like a broken necklace. Discovering that in this place where things do not make sense that there is no inclination to share, no longer a drive to connect that makes me tolerate the whispered accusation of narcissism when I bare myself in public. I can be silent. I don’t need you, I don’t need this space, I don’t need to be heard.

I wait. I wait for the world to have meaning again. The days pass. Some days I find contentment. Some days I live with a stoic acceptance. Some days I cry until I vomit.

People miss me. While I’m in deep space, protecting the world from an atomic anguish. I tow my boat way out to the deeps where the blast won’t burn anyone else’s house down. I swim far from the old comfort of my online world. In sudden panics I run to familiar harbours. I bite my teeth over the blackness and crouch at the edge of other people’s lives and bask a little in their normality. Some days I fail my own principles and howl while a loved one talks soothingly, holds my hand, listens sympathetically, tells me I mean something to them. Sometimes I make them cry. I watch tears in their eyes, desperate to feel anything but the void.

Someone sends me an email like a crow sent winging from a black well to say thank you for writing from your own hell, it helps. I want to save us all. I’m saturated by death. Sometimes I become terrified I’m going to kill myself, and I calculate the loss, the holes punched through everyone I know and have loved and my reach, my influence, my connections so hard won now seem like the worst possible thing I could have done. Alone my death is just a sad story. Have I built a tribe so you can watch me self destruct? Will pain be my legacy here? Why write when I have no answers, only fears?

After a night of terrors I calm over and over, that reignite the moment I fall asleep and wake me in panic, I crawl to my psychologist’s office and wrestle with hysteria in front of her. She books me an emergency appointment with my GP for anti-anxiety meds and diagnoses me with severe exhaustion. None of the fast acting meds are pregnancy safe so I come home holding a script and a sense of being broken that I’m going to have to live with. How sweet it was to feel above this, once.

I start culling the big dreams, the vast sense of responsibility, the career plans. Tangled with my grief is peace. I have tried very hard and maybe now I can stop pushing this boulder up the hill. Enough…. I look into short courses and small jobs – orderly, care worker, and when I’m not being garrotted by my own high expectations and elitism I’m relieved at the prospect of just living a small life, earning a little money, letting my business be a hobby. Painting when it moves me, writing because I love to. Selling a few prints. Letting it be what it is. Not having to turn those skills into a factory, or myself into all those things – entrepreneur, leader, business person, change agent. I’ve watched the successful ones and tried to do what they’ve done, follow their paths. My own parents ran a very successful business for many years. I’ve risked many things and nailed my colours to the mast. Some of them have worked out and as my world burns around me I want to let go and go back to loving the things I have, the risks that paid off, the life that’s waiting here for me.

Exhaustion is storms and sunbursts that run according to their own tides. I have no more control over my feelings than I do over the weather. Night falls at 2 in the afternoon and I creep to bed to hold my wrists and tell myself I’m okay over and over. The moon sings to me and I find I’m still alive – not numb, not ruined after all. I haunt my house naked with starlight on my skin and breathe galaxies with a rueful smile and the night smells of roses. The strain of feeling deeply alive and very dead each day leaves me trembling with shock, a violin with strings wound too tight. But I can feel it seeping back into my cracked heart.

More human than I want to be.”

I tripped over my invisible disabilities and fell hard, and fell often. I am better off where I am now, knowing what I know now. Life still hurts badly at times. It’s more complicated and tangled with more people whose stories I’m careful not to share. I miss writing this blog and having my online community, and being able to use my words to provide context to so much about me that is different and doesn’t make sense. This blog was the way I leapfrogged over so many barriers between me and other people. I felt like I had a whole world of people once, who knew me and cared about me and felt cared about by me. I lived in public in a way that was a mutual gift. I am more private now, I have children, clients, employees who all need discretion and all fear exposure. I find myself more decontextualised than I was to my people. I make less sense, become more isolated. There must be a pathway between disconnection and exposure, but I’m not yet able to see it well. If I can’t be sure, I hold my tongue.

But I spend less time in meltdown, sobbing on the floor. I keep house. I am raising four children at home. My capacity has increased, my understanding of self care and my knowledge about my limits has been a gift. The first time someone gave me noise cancelling headphones to try, I was walking with them through a busy airport. I put them on and pushed the button and the peace came over me like a flood of warm water. It was so intense I couldn’t walk. I sank to the ground where I was and just wept. I had never experienced such peace outside of water. I used to calm myself by lying in a warm bath with my ears underwater. The same muffled quiet wrapped me up and it was so beautiful and so painful to realise I had lived my entire life in a harsh bright world that always hurt and never made sense.

It’s a strange story to tell, given my deep ambivalence about diagnosis in mental health. Diagnosis of poorly constructed syndromes, laden with assumptions and stigma, can function as social curses, doing catastrophic harm. The world of neurodivergence with it’s profound observations and confused wrangling of slippery categories and terms is not so different. The low expectations that come with a diagnosis like autism, and the stigma and misunderstandings that shadow the poorly named ADHD have costs. But on the other hand, I spent literally years trying to understand and find words for concepts as basic as body doubling. I have been on the intersection of so many invisible diversities, contorting myself to try and fit paradigms I was never built for. I am now finally beginning to understand my long history of failures and losses, and start to claim my skills and build my capacity. It’s sad, and hard, and beautiful, and deeply liberating.

Disability Support Workers, Autism and Self Care

/ Sarah K Reece / 1 Comment

Speaking as an autistic person, the parent of autistic children, and the organiser of supports for autistic folks, it is desperately important not to assume anything when it comes to self-care. Some autistic people have no issues in this area, but many of us have struggles! Self-care gets used to mean a few different things such as activities of daily life which are the things we need to do regularly to look after our bodies like hygiene and grooming, and mental/emotional self-care which are things we need to do to look after our mental and emotional wellbeing such as things we enjoy and find meaningful. Autistic folks can have struggles with both, in this instance I’m going to discuss physical self-care.

Culturally we are accustomed to children needing monitoring and support for self-care, but autistic children will often need more of both, and tailored to their particular challenges. We are less familiar with able-bodied adults of normal or high IQ needing assistance with self-care. This means we may fail to ask simple questions, we may miss signs of problems, and we may accidentally add to shame and secrecy.

Examples of Self Care Challenges

I have spent a lot of time in emergency departments with an autistic person in crisis, with doctors doing all kinds of tests before someone realises the primary issue is one of self-care, or that a lack of self-care is exacerbating and complicating the issues. We can have a lot of difficulty with activities of daily life such as

  • Drinking too much or too little water
  • Restricted eating, compulsive eating
  • Forgetting to or struggling to shower or bathe
  • Difficulty brushing teeth
  • Difficulty managing head, body, or facial hair
  • Difficulty trimming nails
  • Difficulty managing splinters, wound care
  • Difficulty managing periods
  • Not taking medications correctly
  • Not enough/too much/other sleep disorders
  • Dressing appropriately for the weather, managing dirty clothes
  • Managing continence
  • Managing pets and animals in our homes
  • Managing domestic tasks

Why are there difficulties?

These challenges can arise for many reasons. Autism can come with intense sensory attractions and avoidance. Some autistic people have a hypersensitive awareness of some body functions, and little or no awareness of others. Many can have difficulty with executive functioning which can make remembering and doing self-care tasks difficult. Sometimes people have never been taught self-care skills. Sometimes people have grown up in disrupted environments such as poverty, foster care, or homelessness where self-care was not modelled and they’ve normalised the lack. Often these issues become more pronounced when self-care isn’t adequate – the executive functioning is worse when people forget to eat, the mouth sensory aversions are even more intense when someone hasn’t brushed their teeth or seen a dentist in 10 years.

What can the outcomes be?

All of these can cause trouble – for example, one person may forget to drink because they never ‘feel’ thirsty. Another may drink far too much because the sensation of thirst is intensely unpleasant to them. Self-care challenges can have serious consequences for people, and in some cases can be life-threatening. It is absolutely possible even for educated, well-off, well-presented adults to have severe self-care challenges that they do not disclose. This is an interesting case study of a late-diagnosed 18 year old where self-care difficulties caused serious medical complications.

The consequences can also be more subtle and hard to see – for example someone who stops leaving the house because they are worried they may smell. People lose out on social and work opportunities and can become painfully restricted in their lives due to these challenges.

The role of shame and confusion

Many people carry intense shame and confusion about why they are struggling with these things. This is often even more severe for those who are diagnosed late and don’t have a framework to understand that their challenges are part of a disability, not a personality flaw. For example, someone may have perfectly physically functional capacity for continence, but have frequent toilet accidents because when they notice they need to use the bathroom they are unable to interrupt what they are doing and give that task a higher priority. They will continue to do the task in front of them – perhaps with overwhelming panic and dread, knowing they are not going to be finished in time to get to the bathroom but stuck and unable to switch tasks. If this person has never had this explained to them, the shame can be intense.

It’s also common to have many factors in play – for this example maybe we add in an experience of sexual trauma that adds shame fear and confusion to all things related to gentials, and a sensory aversion to the smell of urine making bathrooms difficult to spend time in, and a sensory aversion to wet hands making the task of toileting hard to manage.

Secrecy and putting it out of mind is a common way of coping with these issues. Unless directly questioned, many autistic folks with self-care challenges simply don’t volunteer the information, and in some cases are not aware that other struggles are linked to them and may simply endure or spend many hours and a lot of money trying to find causes for illnesses that are actually things like dehydration.

What does good support look like?

Sometimes disability support workers are the ones who notice a problem. We might be the first people who are spending enough time with a person to realise that they never drink, and that they often overdress in hot weather and have frequent headaches, nosebleeds, and fainting episodes. We might be the first people let in on the scary secret. We are sometimes the ones who help make sure the right people are linked into the information – I’ve sat in on more than one Functional Capacity Assessment and had someone breeze right past all their self-care struggles and forget to pass on information like their clinical malnutrition. I’ve also sat through assessments by people with no training in neurodivergence who spent the entire time focusing on the clients physical capacity and completely ignoring these hidden challenges. This is unfortunately common in the medical profession and adds a lot to shame and misery.

We can help by reducing shame and being safe to hold such personal information about someone. When we are supportive, we go at the person’s pace. If they are not ready to tell people like their GP, we build that trust. We accept that this is hard, and that being open about it is in some ways even harder. Sometimes people are very accurate in their fears about how the information would be received, and we can help them find safer people to ask for help.

We can normalise the challenges and keep them linked to the disability, not the person’s character. Disabilities can be tough to manage. Peers and peer experiences can somtimes help a lot. Anything we can do to help someone feel less alone and less freakish can be useful.

We can help externalise the challenges. Drawing a distinction between the person as a problem, and the person dealing with a problem. When we team up to deal with a problem, it’s less personal. We can recruit other safe people for the team too – Occupational Therapists or Speech Therapists with experience in Autism can be very helpful in understanding why some of these are so hard and helping figure out work-arounds.

  • We can help with prompting when the issues are around remembering and initiating tasks.
  • We can body double when the issues are feeling overwhelmed and not being able to focus
  • We can take notes in useful appointments and help people remember the strategies suggested
  • We can help make aversive tasks less difficult or stressful by telling jokes, playing music, planning nice things afterwards, breaking them down into little steps
  • We can remind people to tackle hard things slowly, to take breaks, to be kind to themselves
  • We can be companionable such as sharing lunch time together for someone who struggles to eat
  • We can check in to see how things are going in an unintrusive way
  • We can shut up and back off when the person is feeling swamped
  • We can plan ahead for the next time things are hard – for example if someone has struggles with self harm and wound care, we can help them find a good caring local nurse, make sure their first aid kit is well equipped, and normalise asking casually and privately about self harm during shifts to help reduce severe infections and scarring.
  • We can educate and remind people eg. I wonder if you feel awful because you’ve forgotten your meds?
  • We can accept rigid thinking, validate feelings, and help people care for themselves without directly arguing with them eg. I know it’s very annoying the doctor insists you eat something with this medication, do you feel more like cheese and crackers or yogurt?

Really good support in these areas is built on a solid relationship. The person with the challenges needs to feel somewhat safe and respected. Sometimes they will not see their challenge as a problem which can mean that for them they have to put up with people around them ‘making a fuss about nothing’. This can be managed where there’s some trust. I support someone who has no sense of food safety at all, but accepts that I ‘fuss’ about things like chicken that’s been left on the bench overnight. To them it’s a needless annoying trait of mine, but they value the support I provide enough to put up with my ‘foilbles’ about food safety. I accept that this is their perspective even as I ask them to ‘bear with me’ while I replace bacteria laden chicken with a fresh meal.

People are more likely to hide, lie, or shut down and forget these issues when they don’t see a way of handling things that preserves their sense of dignity. For them, the trade-off simply isn’t worth it. They’ve already tried and failed to do any better at managing it than they are, the last thing they want is for it to have a massive social cost too. It’s often up to support people to make sure it doesn’t. A lot of health and healing comes from finding ways to bring the unspeakable out into the open in safe places, whether that is ‘psychotic voices’, disordered eating, or incontinence. When we work so closely with people in their homes, we can be a huge part of helping make at least that space one in which it is safe for them to have the disability and the challenges that they have, and to still be seen and celebrated as whole people.

Understanding Hurdles to using Disability Support Workers

/ Sarah K Reece / Leave a comment

I have been a Disability Support Worker since 2019 and began employing other Disability Support Workers to help ensure my clients actually survived when the pandemic kicked off in 2020. I also run the NDIS plans for my family members which means hiring Disability Support Workers to come into our home, so I get a fabulously rounded perspective on this one. I can tell you that good Support Workers change lives. The relief of competent support is profound, especially when things have been bad for years. It’s like the storms don’t go away but you finally have a roof on your house to keep out the weather. Support workers can also drive me batty, they are exhausting, daft, unreliable, and uncomfortable as hell. They can also be an intensely vulnerable, isolated, and dehumanised workforce. There’s a lot of perspectives to consider.

One I want to talk about today is not shared very often. I hate hiring Support Workers for my family. It seems so strange for those of us with NDIS funding – we so need the help, we’re so relieved to finally have a plan, there’s all the weird survivor guilt of having access to a resource when many are denied and in need, and then there’s the gap between what we need and what have to do to get it. This is a small gap for some folks. They call a couple of agencies, get onboarded, and away you go.

For me and many like my family, it’s just hard work, and this work is largely invisible and rarely discussed. I don’t like the uncertainty, I don’t like the getting to know each other part, and I don’t like the energy it takes to deal with people coming into our space and not yet knowing how to do things our way. It’s stressful. I don’t like having to look around and interview people. I hate onboarding a new agency. I hate having bad experiences, being patronized, lied to, bullied, manipulated, harassed, and let down. It takes spoons and bandwidth to find, onboard, and train staff. It takes savvy, patience, and time. It takes optimism, hope, and the belief that our needs are legitimate and can be supported. It takes getting over the intense embarrassment of asking/letting someone else do a stack of tasks that I feel are my responsibility. It takes letting people see us, our limits, our mess, our struggles, our bad days, me in a dressing gown at 6.30am getting kids ready for school, a doom box of paperwork with the important document for today’s medical appt lost in it somewhere, getting a call to say someone’s had a meltdown and the Support Worker doesn’t know what to do. Things that make me feel vulnerable. Things that make me feel like a failure. Things I don’t want seen that are now painfully visible and picked apart in functional capacity assessments and shift notes.

So if this has been hard for you too, take heart. You are not crazy, or ungrateful, or alone in this. There are many, many things that can make getting started with Support Workers difficult, and there are many things people have found can make it easier. People can and do navigate these hurdles and wind up with great support. Being able to understand and talk about the hurdles in the first place can help.

I’ve seen people who have never had a Support Worker, folks who had one amazing one they lost at some point, and folks so fed up with the workers they’ve tried they’ve just run out. It’s easy to get stuck. Many of us find the messy ‘first draft’ process just exhausting. We want to jump straight ahead to the part where things are running smoothly. The workers know us, they are attuned, they are responsive, and they know where the tea towels live. Dealing with the process it takes to get there… that’s another matter. The good part of all of this, the part that’s worth hanging on is this. We used to get block funding delivered to organisations who decided all of this for us. What support we needed, which workers they hired, and who was eligible. As much as I hate the workload, I love the freedom and flexibility. I get to hire the people I want, to do the tasks I actually need help with, at the times and in the ways that suit me best. I have the choice and I have the control. The hurdles come with that, but the freedom is pretty appealing when you remember how the system used to work.

Diversity Hurdles

Diversity is a common hurdle for folks. The main training for Support Workers is a Cert 3 in individual support. It’s generally focused on stable disabilities that don’t change a great deal over time such as blindness or an amputation, and on providing personal care such as assistance with showering, feeding, continence and so on. If you are dealing with a disability that fluctuates radically, has an unpredictable course, and/or includes mental health challenges then you’re a little out of the wheelhouse of a lot of the workforce. If you’re trans, or polyamorous, or CALD, or live in a remote area, or immunocompromised, or nonverbal, you’re dealing with all the extra issues of ignorance, confusion, stigma, or just unsuitable support from worker who don’t speak your language or understand your experiences.

Organisational Hurdle

If your disability impacts your organisational capacity this can also be a huge hurdle. Researching, interviewing, training, and managing staff can seem like a ridiculous extra burden if you’re the kind of person who forgets to eat without reminders.

Communication Hurdles

If your disability impacts your communication or relationship capacities you can find yourself swamped by the bizarreness of a system set up for people with disabilities that presumes you can communicate, negotiate, provide feedback, and regulate a bunch of relationships.

Poverty and Housing Stress Hurdles

Poverty is not spoken about enough in this area, but the power dynamics and relationship differences between support for those in severe poverty and those in good circumstances is profound. NDIS is not intended to relieve poverty or replace any other services which means when other services fail, we can have appalling situations such as one of my clients being funded for daily support but being homeless and his phone breaking – how can we even find him when he’s sleeping rough in the park? If you’re struggling on a low income or falling through gaps in other services, Support Workers and all the other NDIS resources can be so much harder to implement.

Trauma and Anxiety Hurdles

Trauma is a common and significant challenge in this space. Many of us have had abusive experiences in personal relationships, medical settings, and with providers. It takes a lot of courage or desperation to let strangers into our lives and homes. I remember once I was having a horrendously bad week, and a friend kindly arranged a cleaner to come to my home. I really appreciated the idea but I’d never had a cleaner visit before. I was so overwhelmed and embarrassed it caused a panic attack and I cancelled the visit – then felt awful about that and ashamed to let my friend know their kind gesture was too much.

What if getting help makes you dependent and even less functioning? What if you lose the help at the next plan review, just when you were feeling safe and secure and things were working? What if a Support Worker takes advantage of you, steals from you, manipulates you, deceives you? These fears are significant barriers for many people and can mean vastly underspent plans and high risks for people with disabilities who are not getting basic needs met.

Overwhelm Hurdle

Overwhelm is a constant, chronic, harrowing state of existence for many of us and trying to add in supports can be just more demands to feel swamped by. Inexperienced or mediocre workers need a lot of hand holding and this can be more energy than it’s worth.

Abelism Hurdle

Ableism is also a huge barrier for many of us and this goes two ways. Support Workers who don’t understand our disability can bring a lot of ableism in with them and it’s exhausting. They might look at your functioning body and say ‘you don’t need help with meals’, because they don’t know enough to recognise that your lack of hunger, anxiety about eating, severe sensory issues, and no cooking skills mean you are clinically malnourished and living on a starvation diet. You need support with planning, buying, and preparing food, and probably with reminders to eat and assistance to make it a more comfortable experience. Support Workers who don’t understand this can add to your sense of shame and invalidate your real needs in ways that leave you worse off.

We often have our own ableism that trips us up. Personally I’ve found this is often more severe for invisible disabilities, and more likely for issues that went undiagnosed or misdiagnosed for a long time. If you’ve spent years being told you’re lazy and just need to try harder, it can be mind bendingly difficult to ask a Support Worker to come and do that task for you. You shouldn’t need the help. It’s a waste of their time. It’s a waste of tax payer money. Someone else probably needs it more. It’s not that big a deal.

Specific Needs Hurdle

The more specific and inflexible your needs are, the more time you need to invest in training your support workers to do things correctly. There’s so many things that can mean our needs are very specific – because you have a life threatening allergy, a complex household with multiple disabilities, severe sensory sensitivities, a recent history of sexual assault, or OCD specificity about how your cleaning needs to be done. The general guide is: the more flexible we can be about our support the less time we need to invest in training and onboarding. The more we need things done a specific way, the more we need to educate, create checklists, have allergy paperwork on hand, and so on.

There’s nothing wrong if your needs are specific, I’m not judging. We all have them in some areas of our lives, and we are often pretty oblivious to how not intuitive they are until someone else blunders through and whilst trying hard to be helpful actually makes a mess of things. If you, like me, have a dog that must be put outside and have the laundry door closed when the last person leaves the house, you can’t assume a Support Worker will know to do that. And if you, like me, get busy and disorganised and forget about that, then you will absolutely come home to find your shoes demolished on the back lawn!

The first time someone helps you make a curry and cuts the onion into wedges when you need them minced finely so you don’t have chunks of slimy onion in your mouth when you’re eating, you will realise that what’s normal to us is not everyone else’s normal. If it’s important you’ll need to communicate it, and to do so respectfully and in an accessible way where your staff are able to remember it and get it right.

There’s many things people do to help overcome hurdle like this, and I share some ideas in this post Navigating Hurdles to using Disability Support Workers. But step one is recognising that the hurdles are real, even if you can’t easily understand or articulate them. We start by finding solidarity in our peers, finding we are not alone in our struggles, and moving away from shame and towards compassion. It is at times hard, and that’s okay. The opportunity to choose and create our own supports is truly an incredible one, and here in Australia we are the envy of the world for the freedoms offered by the NDIS. I am reminded of a line from a favourite book:

What she had begun to learn was the weight of liberty. Freedom is a heavy load, a great and strange burden for the spirit to undertake. It is not easy. It is not a gift given, but a choice made, and the choice may be a hard one

The Tombs of Atuan, Ursula K. Le Guin

Don’t give up, there is excellent, safe, inspired support out there.