Left Alone: The Challenge of Independence

Lately, more talk has focussed on the societal effects of the coronavirus. In many ways the debate seems to have shifted from getting rid of the pandemic at all costs, to still wanting to do that, while looking at the effects of peoples mental health, livelihoods and economic status.

Its interesting to consider this against traditional measures of success for people on the autistic spectrum. It is widely accepted that the frustrations of someone who struggles to find work or socialize may be heightened during these times, yet there is a deeper level to that which point at holes in how we asses an autistic individuals abilities to ‘function’. Most adaptive behaviour tests will asses community functioning, such as using transportation and social interactions. These are useful to measure, especially considering that factors like language comprehension abilities are understandably associated with independence and daily living skills, in both neurotypical and autistic people.

Some studies which have tracked autistics across age show a decline in living skills as autistic people reach adulthood. Particularly, they show a decline in day to day skills such as personal hygiene, and executive function skills, even affecting an individuals ability to perform tasks like crossing a road. However, here’s the issue: Those adaptive behaviour tests mentioned earlier do not measure an autistic persons ability to do something, but rather what they do.

Autistic adults entering a period of isolation may not be losing thier ability to perform day to day activities per se, but having less and less motivation to use them. This has been exacerbated by covid but existed beforehand. If I’m honest, due to the time I’ve spent ‘away from the world’ during lockdown, basic tasks that require a degree of executive function, such as using a cash machine, present themselves as slightly more awkward. On another note, I have a sister in her mid teens who was statemented for ASD during lockdown. While the diagnoses has helped put her life in context, she’s worried about how she might adapt to a post covid world.

I’ve written before about the ‘cliff edge’ that exists within autism. The metaphorical abyss that exists either after school or after higher education, where the lack of understanding towards autisitc people by universities and in the job market, leads to a general uncertainty among autisitcs about thier future. In that blog I spoke largely from personal experience, but I wonder what could have just have easily been had I not overcome the challenges I faced. This will look at the issues of independence and why some find the ‘cliff edge’ a sharper drop than others.

Measuring Progress

Measuring any individuals progress through life is a fruitless task. There are so many standards which you can compare someone against, that those studies have no absolute conclusion.

This is one of the reasons I take issue with the terms, ‘high functioning’ and ‘low functioning’ when describing autism – you sort of know what they mean, but not specifically. When I was a child, I was certainly not ‘high functioning’ in the sense of being able to deal with busy environments, or hold a conversation, yet showed decent imagination and writing ability from a young age. Its not clear if these terms are intended to describe the ‘severity’ of ones autism, thier functioning, or thier everyday adaptation.

In autism research, those who score above 70 on an IQ test are considered to be at the more abled end of the autism spectrum, or to be ‘high functioning’. However, this is a measure of intellectual ability and does not reflect how autistic people perform in the real world. Likewise, using observational techniques such as ‘severity’ as measurements can be equally as unreliable. I have relatives on the spectrum whose coordination skills are lacking and who practice stimming by erratically flapping thier hands. These terms are very limiting as they trap individuals in a category that is stigmatizing. As we’ll explore, being labeled ‘low functioning’ doesn’t mean you can’t do things, just that you may need support.

It doesn’t help that the vast majority of autism research is focussed on children, and diagnostic tests are significantly geared towards them, meaning there are potentially lots of autisitc adults who need help, yet have no guidance as to how or why. When it comes to diagnosing adults, medical professionals often ask for details about early life, which might not be available. Indeed, as far as I can tell, only about two per cent of autism research focuses on supporting adults.

What this means for autistic adults trying to live independently, is that they struggle to hold down jobs or sustain housing. In fact, for many, thier parents are the only support system they have in place. This might at least partially explain why so many adults on the spectrum end up living in shared accommodation with many other disabled individuals, and looked after by professional guardians. I know from my experience as a support worker that these environments can result in a great loss of personal autonomy for all those deemed to be ‘too disabled’ .

The reason for the heavy slant towards children in autism research is that families may sign up to be studied, hoping for a ‘quick fix’, yet may ultimately withdraw once they learn about the impossibility of a cure. Funding agencies also tend not to be interested in supporting studies that might help to tease out why the years after high school are difficult for many. That’s especially true for studies on services to help young people with autism transition to adulthood.

Growing Pains

Due to the limited consideration on what happens to autistic people after the age of 18, that remains a subject in need of further investigation. What we do know is that, like for most, this is an important period in establishing a foundation in adult life. This is the period where the expectations of finding a job, enrolling in further education, and living independently present themselves, and not having the support to achieve these can lead to large amounts of isolation among autisitc people; Many also have two or more physical or mental health conditions in addition to autism, making it difficult for them to meet these milestones.

This is made worse by the fact that progress can slow in autisitc adults after education. When I finished university, I found myself in that dangerous in between space – a void which was filled by volunteering with autisitc adults. In these moments, you do lose a lot of motivation. Even staying at home during the coronavirus has negatively effected my confidence. Part of the reason I am able to get through those periods of pervasive blankness is the support I’ve received with my mental health, or in finding opportunities to keep my mind occupied. I worry for those who don’t have that same support available.

Some psychologists such as Catherine Lord attribute this to the expectations of autistic people and their parents being higher, but also a ‘lack of structure’. While it is perfectly possible for an autistic person like me to become irritated by the overly structured environment that high school provides, the lack of any cohesion in life can be distressing.

In fact it may be the case that being forced into social isolation and the physical and mental effects that fosters, partly explains the prevalence of mental health difficulties, and physical health conditions like diabetes and heart disease in autistic people. Something as simple as missing a medical appointment, or a sense of not understanding yourself, can have a profound effect. Loneliness is also very common among autistic adults and can lead to depression. Access to health services also drastically declines after high school, leaving many autistic adults adrift.

“They’re under-employed, and they miss out on opportunities. They don’t get to participate in the things that will often get the rest of us out of the house and keep us healthier, emotionally and physically.”

Christopher Hanks, Centre for Autism Services.

Exacerbating these feelings of being withdrawn from society is that of the burnout and stress caused by masking. I acknowledge that its very difficult to differentiate good routines from bad ones. For example, retail jobs aren’t the highest paid, and I know from a few bad interviews that one of those jobs would’nt have suited me. Still, to some on the spectrum a job like that might provide a sense of certainty and routine. Perhaps one way to judge which routines are positive is to look at masking and to ask “are these routines leading to feelings of mental and physical exhaustion?”. While the current situation has put me into a position where I am constantly fighting off the latter, through both my writing and my work, I feel as if my creativity is encouraged. This has very much led to a situation where my mental health has peaks and troughs.

In a sense the current pandemic has underlined many of these problems. Without getting too political, an action like the UK’s governments recent decision to deny food vouchers to poor children is indicative of a larger attitude towards the vulnerable. Staying on that issue, many autisitc children have restrictive diets which schools can help to provide, but on a wider level its worth noting that people on the spectrum are not having some crucial cornerstone in developing independence hindered by receiving support. In many cases, its a lack of help and assistance which prevents them from reaching a level of mobility and self-determination.

An Atypical perspective…

Measures of success for autistic adults need to mature: While measurements of success will be inconclusive by nature, in conducting those studies it does not help to look purely at one measurement such as IQ or the vague ‘severity’ to reach a conclusion. While it may be the case that a combination of these factors provides a more detailed picture, the end result of any study which looks purely at personal attributes, will ultimately be to assign blame. Perhaps we should be looking at how best to support autistic people once they leave school, so that we can better understand how they cope when given the opportunity to unleash thier potential.

Autistic adults need more support to combat isolation: In this sense, isolation can mean anything from physical isolation – being stuck in patterns where you are not seeing or speaking to anyone, to the kind of isolation that occurs when one is shut out of the job market, or does not enjoy a meaningful experience in education. Overcoming isolation means having schemes and support systems in place, yes in order to help autisitc people become ‘productive’, but also to enable them to feel like they are achieving something worthwhile and that thier life matters. Through elements such as student radio in uni, and the change 100 scheme which allowed me to find meaningful work, I am on a constant mission of overcoming isolation. And while different forms of feeling shut out still rear thier head – notably through this pandemic – with help, I am doing my best to wrench myself from the anxiety which situations like these can inspire.

Narratives of ‘self-independence’ are often unhelpful: There is a common myth that giving people help creates an air of dependency and that to have any hope of succeeding, people need to help themselves. The idea has always seemed strange to me because we as humans don’t exist in a bubble and we all have a level of dependence on each other. In the case of autistic people these narratives are paticulary unhelpful because support is used precisely too encourage independence and achieving upward mobility in a society thats not always accommodating for those who are differently abled, can be a mammoth task, that requires a great amount of support.

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