There’s a lot to be desired when it comes to autism research and assistive technology. Firstly, a lot of it is aimed at the employed, which is kind of ironic when you consider that according to research carried out on behalf of the government this year, The Buckland Review, revealed that “3 in 10 working-age autistic people are in employment compared to around 5 in 10 for all disabled people and 8 in 10 for non-disabled people.”
Governments are constantly pouring money into initiatives to get people working and productive, whether it’s the clinically obese or the disabled, but does anybody ask autistic people, disabled people, or the clinically obese what they need in order to work or live better more productive lives?
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Secondly, a lot of it is aimed at children, and I can see how this is important, nor should it stop, but children become adults, and the more you learn from those who’ve grown into autistic adults, then perhaps the more you can help children.
This is especially true of late-diagnosed adults, how can you avoid the trauma, the bullying, the denial of your symptoms, and traits and how does it affect you long-term? Yes, the answer is to diagnose sooner, but what else can we do to understand the condition better, so we can all live more productive, safer, more autonomous lives?
Late diagnosis of autism can be fraught with difficulty
I was late diagnosed, and it was extremely hard to get in front of a psychologist. Getting past a GP was notoriously difficult given that the litmus test for many years was eye contact. Because I didn’t present in the way the medical profession would recognise back then, I spent many years in the wilderness before I was assessed by a psychologist. Roughly, this lasted for around 17 years and two years from referral to assessment. Thankfully, a lot has changed since then and the medical profession is slowly waking up to the fact that women especially, do not present in the same way as men.
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What do I want to feel safe and autonomous, given that as an autistic woman, I value independence and freedom to come and go as I please?
I crave nothing more than to feel safe and autonomous, and for now, I do. but this may not always be the case. This is simply because where I live allows me to live somewhere that gives me privacy, safety and a reasonable amount of isolation from the outside world. I let the world in at a time of my choosing. I’m also blessed in that I can work from home and remotely.
As my interest in assistive technology grows, I ask myself, what’s out there, not just for myself, but for those with an LD and any other conditions on top of their autism, in a world that feels increasingly unsafe for everyone?
Only by asking the right questions, and seeing challenges as opportunities for improvement, invention and empowerment, can we know what to create. Research is crucial in order to understand what people struggle with. And research is thin on the ground for autistic adults.
There are assistive technology tools out there that can range from anything from low-tech to high-tech or somewhere in the middle. It doesn’t have to be complex, a simple aid created with thought and care, to something that could quite possibly change the way autistic people live for the better.
What do autistic people want?
With a spectrum that is as wide as you can possibly imagine and with new information being discovered all the time, it’s hard to pinpoint what any of us want. After all, we are all different people, we are not a homogeneous group with the same traits. Autism and anything within the spectrum can vary from person to person. This is part of the problem, the spectrum is so vast and affects us all so differently
What I need is the safety and privacy that allows me to live autonomously for as long as I live.
For a long time, autism research has focussed on children, with adults largely overlooked. Autistic children grow into autistic adults and then into old age. That journey should be one of independence and quality of life which is just as important to adults.
In 2023 a systemic review of assistive technology was carried out by the National Library of Medicine, US. They reviewed 32 articles that had -
“......evaluated assistive technologies that have been developed and evaluated through a complete circle of interactive product design from ideation, prototype, and user evaluation.”
They discovered that although they aimed to improve independence and living quality for adults there was found to be a “lack of requirements-driven design..” and this was largely due to the lack of “requirements-gathering results” in that the “ designs were based on existing literature without targeting actual user needs.”
They concluded that -
“......assistive technologies for autistic adults {should} shift some attention from assisting only autistic adults who require at least substantial support to embracing also those who have been living independently but rather have difficulties in social interaction.”
So, what seems key to me here is that it’s important to ask autistic people themselves about what they need in order to target their needs where possible. Also, interesting that ‘social interaction,’ is seen as valid and as important as anything else.
More focus on working with autistic people when designing any kind of intervention was highlighted earlier this year in the Guardian, as was the need for emphasis on social interaction, as one mother pointed out -
“....Fynn’s lack of communication wasn’t safe for a child and would be even less safe as he grew up: you need to be able to communicate if there’s something you don’t like.”
Social interaction isn’t always about socialising with other like-minded individuals, it can be as much about communicating when you dislike something or letting people know when you’re in danger or don’t feel safe.
A trial into social communication therapy is being carried out now on babies as young as 10 months old who are believed likely to develop autism.
Again, this is aimed at children, but there is hope as more research into autism increases. Dr Grainne McAlonan from the Department of Forensic and Neurodevelopmental Sciences and Institute of Psychiatry, Psychology and Neuroscience at King’s College London, is focusing her study on serotonin. This plays a fundamentally important role in sensory processing, cognition, mood and sleep.
At least 25% of Autistic people have high blood serotonin levels. They are investigating a compound, psilocybin to see if there is a ‘biological response to the drug that might prove clinically useful.’
“Ultimately, this research may allow us to provide more personalised choices for those autistic people who want the option of a medication for their difficulties,” she said.”
Older autistic people are now being given more focus with the University of Plymouth working on the “Bridging Project” using virtual reality to help reduce the autism employment gap. Queen Mary University London is looking at social media and how it is used by young autistic people looking at how they engage with others and what their interests are.
Interestingly, Audit 50 led by UCL (University College London) looking at the experiences of older autistic people. People in this age group are often overlooked and we know little of what happens to those over the age of 50. What does life look like in middle age and beyond when you’re on the spectrum?
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What kind of old age are you likely to experience if you’re autistic?
If you do go into a nursing home how will you cope with communal living and group activities for people who don’t enjoy interacting with others? How will you navigate the lack of mobility and all the things associated with old age, loss of hearing, and sight?
What’s exciting about Audit50 research is that they look at the difficulties of getting a diagnosis over 50, especially for women, and ask the fundamentally important questions about whether it’s harder to get a diagnosis if you’re poor or from an ethnically diverse background. Are mental and physical health problems more common and are older autistic people likely to get less quality healthcare? What do older autistic people who have never received an official diagnosis need?
Other than people to confide in (autistic people can be socially isolated) what can a safe adult life mean for people on the spectrum?
Anything that’s either technically or manually produced that helps people feel calm
Places they can go to feel safer and help them calm down following an altercation with something unpleasant.
This could again be anything tech or VR-based or something manually made like a fidget tool.
Communication can be difficult at the best of times and technology can be utilised to facilitate communication for those who are non-verbal. A hand-held device can be a useful aid for communicating with others, however, one of the things I have constantly battled with in the past and worry about the most is being misunderstood, therefore choosing the right tool is crucial, and one which is adapted to suit that individual’s needs whether they be cognitive or motor.
Matthew Swindells an evidence, research and evaluation manager at the National Autistic Society, argues that we need “to focus on the topics that really matter to autistic people.” We can do this by asking, and interviewing autistic people either in person or online, on camera or through a series of survey based questions.
The more we ask, the more we find out, and the more we find out the better the technology is, and the better all our lives will be. For this affects us deeply, but it can impact those we love too. The ripple effect of seeing those you love struggle is a painful one.
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