A Response to two of the noted needs, highlighted by the National Autism Project (NAP) Report
When I think of ‘the future’ I find it difficult not to drift off into science fiction movies where mutants are the ones who win the day. Mutants, or mutations, are those who are deemed less than perfect, less than ‘normal’ by those who make the rules. They are the population in the movies who didn’t turn out right (in the way the ruling majority said they should) and are banished to live a life in the caves below the earth’s surface. Or, they are those who have ‘powers’ that enable them to fly, to become invisible or to rescue others and be the secret hero that everyone speaks of, but no one has seen.
I have often thought of myself as a mutant. I must emphasise though: mutants are part of the normal distribution in the human population. So, this is normal for me. By no means do I need to apologise for being who I am. It’s only ignorance and fear that banished the mutants in the first place. People tend to fear what they don’t understand or what seems ‘different’ to them. Finding common ground between us helps to dispel this fear. The NAP report highlighted ways to bridge the gap between theory and practice.
My social skills, like other autistics, are off line for me, unless others connect to me via areas of interest. Research shows us that when connections are formed we are more able to be ‘plugged into’ the conversation. So, the good news is that such connections are enabling.1pbi.sagepub.com This might seem a long way away from recommendation2crae.ioe.ac.uk in the NAP report on tackling environmental and other stressors but it’s actually a very important factor because when individuals are connected to concepts and understanding they are less stressed.
If we are to tackle these environmental and other stressors,3nationalautismproject.org.uk then accommodating individual motivation in autism must be uppermost in the community’s thinking. Of course, there are many ways to build in appropriate supports that decrease inappropriate stress and the issue of motivational interest is just one of these.
For example another issue to consider is that of sensory stress. Yesterday, when my wife and I were talking we noticed how much less painful it was to accommodate the ‘noise’ of the radio when we were interested in the topic under discussion; interest mediates stress reduction. One way of assisting us in this is to accommodate autistic interest. In autism, research has shown GAMMA is activated to do its job (giving an individual access to a wider picture) when individuals are motivated.4Lawson W. (2013: March) Autism spectrum conditions: the pathophysiological basis for inattention and the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5). OA Autism 01;1(1):1. . As well as this enabling the ‘spread’ of sensory information, causing less discomfort, it builds bridges between people. This is important because when we have shared access to the wider picture we are less likely to take things literally (only seeing black or white). It also gives us common ground which enables us to relate to other neurodiverse people. Building common ground is a useful way to combat stigma and discrimination (recommendation5madisontech.com.au in the NAP report).
In ‘the future’ I very much wish to be part of, I hope that all of us, who seem so invisible, will become known, valued and necessary. In the film ‘Avatar’ the saying the indigenous use between one another when they meet is: ‘I see you.’ The first time I heard that expression I cried. How marvelous to be seen and be welcome.
Inclusion isn’t about including us all equally it’s about including us all differently. It’s our differences that add so much colour to the world. It’s our differences that place an over view of how something can be seen in a way which gives a project its edge or a meal its flavour.
I know ‘difference’ can feel scary and, as humans, we are more at home with what we know. But, if no-one took any risks and if no-one took any steps to bridge the gaps between the known and the unknown, new frontiers would never have been conquered and we wouldn’t have maps of the world, of DNA, or of aspects of the brain.
Within the Co-operative Research Center for Living with Autism (or the ACRC: Australia) I am involved with peer research. Our vision and mission statement says:
’Our vision is to see autistic people empowered to discover and use their diverse strengths and interests. Our mission is to motivate, facilitate and translate collaborative autism research across the life span, underpinned by inclusive practices’.6autismcrc.com.au
Our research focusses, like that within the UK at the Centre for Research into Autism and Education 5, upon ‘nothing about us without us’. Co-production sees autistic individuals at the helm on every level. This is our future and it is the ‘now’ we are beginning to enjoy.
In this future as an autistic, I don’t have to apologise for needing to take certain steps to care for my sensory disposition. It should be usual for music in a restaurant to be played less loudly and for lights to be less bright. In this future it’s usual to listen to someone, but no-one thinks it’s odd if you don’t look at them while you listen. In this future it’s also usual for individuals to wear ear defenders, weighted garments, or/and use fidget toys to aid concentration. Although, apparently, engineers are working on ‘sound management technologies’ that could mean autistic individuals would not need to wear ear defenders at all because “sound management technology is moving on rapidly and has the potential to obviate the need for sound blocking technologies, allowing autistic people to participate more freely in unmodified sound environments” (Hilary Gilfoy referencing research by Brunel University in a personal conversation, September 2017). See also 6. Wow, that seems very useful. Currently I use a ‘hearing aid’ which filters out background noise allowing me to be present in a noisy environment and still take part in a conversation without having to cover my ears with my hands.
If we are to progress recommendation 6 in the NAP report (fight stigma and discrimination) we must do at least the following: awareness of autism needs to move beyond acknowledgement of existence and toward acceptance and actively accommodating who we are, as we are and without trying to change us. There are a myriad ways to support autistic people and facilitate their access to life and to leaning that don’t deny who we are or involve the need to change us.
The essence of who I am, in the future I hope for, reflects the ongoing personal change and growth that is desired by us as autistic people. There are many humans who are asexual, gay, straight, and sexually adaptive, transgender, gender fluid, intersex people and this is just as acceptable as being tall, short, fair or dark, male or female. So, for me all that’s usual and valued is a constant that looks to those elements which encourage life, rather than some traditions which stifle it. For example, when I was at school gaining ‘a pen licence’ (ie being allowed to move beyond using a pencil) was almost out of reach for me due to being dyslexic and dyspraxic. It was only after being given access to a keyboard, where each letter was beautifully formed and remained intact each time I used it, that my reading and writing strengths flourished. Technology is so enabling for so many, I’m glad in the future I envisage technology is common place and equals out the obstacles, allowing a more level playing field, for all.
In the future, as I see it, the qualities of the most common, the most unassuming, those which some might not give a second look to, these are the things I want others to notice. It might be within the mundane, the unexpected, that we will find life’s richest rewards.
Sometimes, managing disability and accommodating difference might feel like a burden, a weight too heavy to endure, but weights build muscle and muscle enables movement and activity. Disability is far too often coded in monetary terms and many are quick to mention the ‘costs’ of autism. I was taught that the things in life worth fighting for tend to come at a cost. “No pain, no gain” some will say. Yes, sometimes life does feel overwhelming and beyond me, but then I give myself a break. Caring for one’s self and for others is costly. However, the rewards, as the NAP report outlines, really can outweigh these costs.
If we do nothing and continue with the status quo we may be adding to those weights in a manner not productive to building hope, energy and good outcomes. Changing our thinking into a more accepting, active awareness, that builds on our strengths and interests to connect us to life and learning, is a better way to go. This is the future I want to see.
The Future
Life on earth is but a moment caught within the crease of time,
The seasons come and go again,
You have your life, and I have mine.
The seed that’s planted within the ground
Cannot choose what to become.
A potato, an apple or a rose for some.
However, for it to be the very best,
It needs rich soil, not poor.
The sun and the rains must come,
To open that seed’s door.
I may be born to nourish others,
I may delight the senses.
I may grow tall,
I may grow small,
I may stay stunted beneath wire fences.
My future may not depend on my stock,
So much as it does upon sources.
Sources of warmth, sources of care
I depend on the nurture to be for me there.
Then I can blossom and sing with the birds,
Then I can grow my potential.
So plant me in goodness and all that is fine,
Please keep the intruders away.
Give me a chance to develop, in time,
To become who I am, in life’s future, one day. 7Lawson, W. (2006) ASPoetry, JKP: London, UK
Wenn B Lawson
Dr Wenn Lawson is a member of the National Autism Project Autistic Advisory Panel. He is a psychologist, lecturer, researcher, author, autistic adult, parent to autistic son and grandparent to two autistic girls; he has run his own business for nearly 20 years; Wenn was considered learning disabled in early life.