Autism: Out Of The Box

It’s impossible in a short essay to cover autism in a manner that will be representative of everyone’s experience of autism.  In this essay, autism is used as a single term to provide linguistic consistency, rather than using the terms autistic spectrum disorders,  Aspergers, pervasive developmental disorder, or another diagnosis that fall within the autistic spectrum.

Photo 1-James-Barnett.and-border(James Barnett)

The medical terminology that defines autism as a “disorder” is unhelpful and many autistics would consider autism to be a neurodevelopmental disability or a neurological difference. Although diagnostic language can be offensive to some autistic people, being diagnosed can bring around an inner understanding, and enable additional support with education, personal care, mobility, housing, employment or finances. It is also recognised that the earlier a person is diagnosed and receives additional support, the more quickly they will develop, and the higher their quality of living will be.

Autism affects each person differently, and the intensity of symptoms can change depending upon current circumstances. However, autism is a neurodevelopmental disability which affects communication, thinking and imagination, social interaction, and sensory experiences.

Some autistics may be non-speaking or may have impaired intellect, whilst others may be authors, creatives, entrepreneurs, post-grads, students or employed. This is reflective of the non-autistic community. However, for those with autism, too much information, ambiguous and indirect presentation of information, and literal thinking, can make it difficult to gather, understand, process and respond to what’s being communicated. It’s as if the rest of the world has a secret code, and this confusion then creates misunderstanding which can lead to isolation. (Source Link 1)

Photo 2-Jen-Elcheson-with-border(Jen Elcheson)

When discussing social imagination Monique Botha says “I don’t mean that we lack any way in the form of imagination, because we’re writers, we’re poets, we’re scientists. We have these absolutely incredible minds, and we do wonderful things with them. It means that in a conversation, I genuinely won’t know what’s coming next… I won’t see it coming and part of that is because I struggle to read body language. Your faces all look the same to me, no offence. Which means you could be standing there getting aggressive, you could be getting really really angry with me and I’ll be like ‘oh yeah, hi’ which means that when you punch me I did not see that coming.” (Source Link 2)

Something that bothers me is how society tries to force autistics to fit into “our” interpretation of the world. We may think people are unusual if they don’t respond to our attempt at communication, if they wear noise-reducing headphones in the office, if they decline an invitation to a social event in a busy environment. Others may try to force eye contact. Why should autistics try to fit into our mental framework? Wouldn’t it be better if we tried to meet an autistic person on their terms?

Photo 3-Kerryn-Humphreys.jpg-with-Border(Kerryn Humphreys)

When discussing eye contact Monique Botha explains “with me, if I’m comfortable with someone I’ll look them in the eye, and it will be as intimate as kissing them on the cheek” (Source link 2). Imagine a colleague trying to kiss you on the cheek without your consent, how would that make you feel? Non-autistics may often be trying to build a bond or foster friendship by trying to force eye contact or communication. However, there are other, non-invasive ways to do so. Drop an email, explain a bit about yourself, you know – do the conversation/introduction stuff but without pressure, and if you do not get a reply don’t take it personally. Accept that the other person cannot communicate with you in that way today. Say hello another day, in passing, and don’t expect to get a reply. It’s not rudeness, the autistic person is having difficulty communicating, don’t judge, don’t make it into a big deal, because it isn’t. If someone is unable to communicate with you on your terms, don’t assume that they do not understand you. They do. If you’re genuine and sincere and don’t try to pressure them, given time and familiarity they may well approach you.

photo-4-Bo-Rex-Moore(Bo Rex Moore)

Hyper and hyposensitivity to sensory stimuli can overload autistic people, conversely, they can also be super developed career skills that are needed in the fields of quality assurance, IT, product testing, data analysis and engineering. On the negative side, an autistic child, on a hot sunny day, hungry, just before lunch, the whole class is shouting, the label in her jumper is scratching, someone drags their chair on the floor. Sensory overload. The child rocks on the floor, counts out loud and picks her skin until it bleeds. This is where diagnosis may be vital. A diagnosis may lead to a statement of special educational needs, and additional support in the classroom. This support means that the child is then calmed and soothed by a teaching assistant whilst the teacher carries on. Without this, autistic children can be labelled, excluded, and expelled. Expelled for being failed by the school and the state. It happens.

On the positive side, there are companies that seek out autistic people because of their hypersensitivity and how this is valued in the workforce. As Noah Britton says “Luckily this hypersensitivity can be very useful. We have an incredible bird of prey like the ability to detect differences in the visual environment very very quickly…There’s actually, a company called Aspiritech that hires autistic people only, because of this hypersensitivity, to do product testing, and figure out what differences there are between their website and the website they actually want” (Source link 3)

Aspiritech, Auticon and Goldman Sachs are a few of the businesses with a positive approach to autism, and which understand the benefits of having a neurodiverse workforce. A few years ago, Jonathan Young began a part term internship with Goldman Sachs. Because of his skills, talent and determination, he has turned a part-time position into a full-time post, and he has had regular promotions.  When discussing his career as a business analyst at Goldman Sachs, Jonathon says, “I’m the company’s global go-to guy for all the information used in every single one of our internal and external presentations…I’m moving up the ladder every year in terms of responsibility or promotion. My ambition is to maintain this momentum. In 10 years, I want to be someone fairly big.” (Source link 4)

However, this is far from the norm. In the UK only 16% of autistic adults are in employment. Forty-three percent of autistic adults that have found employment will be sacked because they don’t fit in socially, despite their productivity and performance being more than adequate. They can do the job and yet nearly half of them will find themselves sacked. Of those that do remain in employment, only 10% will have support to ensure they can fit in to the working environment. We are more than letting autistic people down, we are causing harm either by our actions or lack of them. “in the UK, just 16% of autistic adults are in full-time employment, according to the National Autistic Society. And yet research has shown autistic traits can be associated with high numbers of unusual responses on divergent thinking tasks; a mark of creativity, which is sought after by ambitious start-ups. Meanwhile, research from University of Montreal suggests that people with autism are up to 40% better at problem-solving” (Source link 5)

The research also shows that when companies do employ autistic people then their organisation and employees benefit from it. Autistic people have a whole array of skills that are required in a healthy thriving, working environment. They are especially good at problem solving, because they have a unique perspective on the world, and can see things that their neurotypical colleagues over look. Some recent research into the costs/benefits of having autistic employees found that the “Overall, the impact of having an employee with ASD in the workplace was overwhelmingly positive …particularly in regard to increasing awareness of ASD, and in promoting a culture of inclusion. Employees with ASD also contributed new creative and different skills to the work environment and positively impacted on workplace morale.” (Source link 6)

Marcelle Ciampi is one of the contributors and co-author of this blog. She is a recruitment consultant, and she recruits people to be software testers from home. 70% of the workforce are autistic. Being able to work from home is a relief for many autistics as it means there is no social pressure to interfere with you work. Marcelle works for ultra testing, it a large organisation and has many varied opportunities for work.

Photo 5-puzpiece-with-border(Kimberly Tucker)

Now here’s the negative side of diagnosis. When talking about societies need to label people with mental illness and disorders, Jon Ronson says “We seem to love nothing more than to declare other people insane. We love to reduce people to their outermost aspects, to the aspects of their personalities that might be labelled mental disorders. All this is creating a more conservative, conformist age…. when we reduce people to their flaws. Look we’re saying, we’re normal, this is the average, we are defining the boundaries of normality by labelling those on the outside of it” (Source link 7)

Photo 6-red-and-white-with-Border(Amalena)

This is where we need to take autism out of the box. Autistic people are not a set of symptoms and diagnosis. “Autistic people are sons and daughters, husbands and wives, mothers and fathers, co-workers and employees, students and teachers, friends and relatives, neighbours and community members. You probably know an autistic person. Autistic people have different abilities, different needs, different interests, and different personalities.” (Source link 8)

When we as are society label people as “others” we de-humanise them and we open the floodgates of discrimination. Do we discriminate against autistic people? Is it as bad as this really?

According to the United Nations “Discrimination against autistic person’s, [is] the rule rather than the exception”. (Source link 9)

The discrimination against autistic people is severe. On a societal level the discrimination means that we are being deprived of the presence, skills, talents, colleagues and friendships of autistic people. That’s a huge loss. On a personal level the stress of discrimination is tragic. Anxiety and depression are more prevalent in the autistic community than the non-autistic community. 1 in 4 non-autistics will experience depression in their life time. If you’re autistic that statistic goes up to nearly 3 in 4 people, 75%. As awful as this is, when it comes to suicidality it gets worse. 64% of autistic people live with suicidal thoughts. Now let’s be clear about this, anxiety, depression and suicidality are not diagnostic symptoms of autism. These experiences are as a direct result of the discrimination and stresses that are common in minority groups. These statistics come from the research of Monique Botha. An autistic scholar who is applying the Minority Stress Model to autism, as part of her PhD. (source link 2)

She goes on to explain that scientists have now found a way to reverse the autistic genes in mice. She questions why do we try and find cures and fund drugs instead of accepting and accommodating the strength and colour of diversity.

Will we put up with this? I think not. I hope not. With between 1% and 2% of the population being autistic then the chances are that you know someone with autism. Why does society find it easier to try and cure or medicate people, rather than accept them for being who they are?

Why do we need to accept autism?

“Because autistic people are your friends, family members, children, partners, co-workers, fellow-citizens, customers, and neighbours.

Because autism is a natural part of the human experience.

Because autistic rights are human rights.

Because autistic people can speak for ourselves, and we want you to listen to us.

Because we aren’t going anywhere.

Because this is our world too.

Because there are all kinds of minds, and this world is big enough for all of us.” (Source Link 10)

Photo 7-Awoken.jpg-with-border(Marcelle Ciampi, AKA Samantha Craft)

 

Authors

Richard Keys, Amalena, Bo Rex Moore, James Barnett, Jen Elcheson, Kerryn Humphreys, Kimberly Tucker, Marcelle Ciampi

Additional Thanks to Judy from Actually Autistic Blogs List

 

Source Links

1 – Autism Initiatives; Symptoms of Autism; Online at: (http://www.autisminitiatives.org/about-autism/what-is-autism/symptoms-of-autism.aspx)

2 – Botha, M; 2016; A Quick Trip To My Home Planet; Surrey University; TEDx; Online at: https://www.youtube.com/watch?v=NCAErePScO0

3 – Britton, N; 2015; Autism: give me a chance and I will change everything; New England College; TEDx; Online at: https://www.youtube.com/watch?v=RkD9d8qzB-g

4 – Hill, A; 2013; Autism doesn’t hold me back. I’m moving up the career ladder; Online at: https://www.theguardian.com/society/2013/mar/08/autism-career-ladder-workplace

5 – Davis, H; 2017; Forget stereotypes … how to recruit talented, neurodiverse employees; Online at: https://www.theguardian.com/small-business-network/2017/aug/31/forget-stereotypes-talented-neurodiverse-recruitment-entrepreneurs

6 – Scott, M, et al; 2017; Employers’ perception of the costs and the benefits of hiring individuals with autism spectrum disorder in open employment in Australia; Online at: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177607#sec008

7 – Ronson, J; 2014; Declaring Other People Insane: Marthas Vineyard; TEDx; Online at: https://www.youtube.com/watch?v=gnGAjiALurI

8 – The Autistic Self Advocacy Network; Autism Acceptance Month: Acceptance is an action; Online at: http://www.autismacceptancemonth.com/what-is-autism/

9 – United Nations Human Rights. Office of the High Commissioner; 2015; World Autism Awareness Day – Thursday 2 April 2015; Online at

http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=15787

10 – The Autistic Self Advocacy Network; Autism Acceptance Month: Acceptance is an action; Online at: http://www.autismacceptancemonth.com/about

11 – Ultra Testing; Online at: http://ultratesting.us/

Autism: Out Of The Box, was a collaboration between Richard Keys, James Barnett, Jen Elcheson, Kerryn Humphreys, Bo Rex Moore, Marcelle Ciampi, Kimberly Tucker, and Amalena.

With Special thanks to Judy from Actually Autistic Blog List

It has been kindly published by The Sociological Mail

 

Homelessness – People Are Only Invisible If We Choose To Ignore Them

The aim of this project is to encourage people to stop and speak to somebody that is sitting on the street or selling the Big Issue. If you do not have the time, then make eye contact as you walk past and wish them a good day. People are only invisible if we ignore them.

My motivation for this project developed from seeing a poster on several shop walls, which had been produced by a local council and several homeless charities. It stated that there was enough support by the council, soup kitchens and charities in the town, so could we stop giving to people on the streets, and donate to the charities instead. It also stated that by giving money we are deterring people from seeking help.

I am not saying that we should give money, but I found the poster to be a somewhat callous and cold-hearted approach to take. There are some wonderful homeless charities in the UK and I am in favour of the great work that they do. However, the posters raised questions for me. If you are homeless, what is it like to have people walk past you and ignore you? If the council and charities are winning the battle against homelessness then why are people on the streets? Why does the government rely on charities to try to improve the circumstances for homeless people and not do more? The posters, which are effectively asking the public to ignore the plight of people living on the streets, are encouraging us to further invalidate those individuals. The majority of the people who are on the streets ARE linked into their local council and charities, and these are failing individuals and to relieve homelessness.

The government piloted “No Second Night Out” in London during April 2011. Its stated aim is that they are ”Committed to ensuring that no individual arriving on the streets will sleep out for a second night.” and to “end rough sleeping in London”. The pilot has now been implemented nationwide. Although NSNO reports that is a success, the research from Crisis tells a different story “Government street counts and estimates give a snapshot of the national situation. The latest figures showed that 4,134 people slept rough across England on any given night in 2016 – a 16% increase compared to the previous year, and more than double the amount in 2010.” (Quote) With homelessness having doubled since 2010 we can see clearly that NSNO is not working.

Most homeless people have suffered trauma, a dysfunctional upbringing/home-life or have suffered from other forms of social exclusion. To be homeless is to be vulnerable, to be at risk of violence, to have restricted access to health care and to have less opportunity for well-being and employment. In December 2016, The Guardian newspaper reported: “of people who had slept rough in the past 12 months, 55.5% had experienced being verbally abused or harassed – 15 times higher than the general population.” (Quote).

When you meet someone on the street stop and have a chat. Acknowledgement and being valued as a member of society are basic human needs. It is also good to check whether people are accessing local support and if they are not then you can seek details of support services and provide them to the individual. You can contact Street Link if you know someone sleeping rough, and they will then look out for them, and link them in with local support. All councils have a Housing Options team, which provides guidance and support for homeless people. Most homeless people are aware of, and accessing local services, but it is useful information to have and to pass on if required.

If you would like to know more about homelessness or make a donation to the national charity for homeless people then please contact Crisis. Homelessness:-

If you have had at least 1 days’ pay from the armed forces then there are several charities who would like to support you. Combat Stress, Royal British Legion, SSAFA

There are many charities that support rough sleepers and vulnerably housed people and there are links to them below the photos.

Homelessness

 

L – July 2017

L does not like to sit with his hat in front of him, but circumstances have left him quite desperate. He prefers to sit without begging and allow the power of suggestion to present a question to passers by. When you see someone who needs help do you stop or do you pass them by?

Homelessness

 

J – May 2017

J is a combat veteran. Next time you see someone sitting on the street, stop and say hello. You may realise you have more in common than you think.

Homelessness

M – May 2017

Warm, friendly and despite his circumstance he remains hopeful and Jolly.

Homelessness

DB – May 2017

DB is intelligent, kind and funny. He is also ex-armed forces and says “Homelessness can happen to anyone”.

Homelessness

KJ and R – April 2017

KJ and R, are vulnerably housed. They both have physical and mental health issues. They find that friendship helps them cope with very challenging circumstances.

Homelessness

J and V – April 2017

J has been homeless for many years of his life. His only wish is that Nations and individuals work together to make the planet a better place.

Homelessness

MB – March 2017

MB was kind enough to allow me to take his photo. I have pixelated part of the image at his request.

Homelessness

R and E – March 2017

R and E both have serious health conditions to cope with, which are exacerbated by sitting on the streets.

Homelessness

R – March 2017

R is being informed he is not allowed to beg, and that if he does not move on then the police will be called to remove him. R praised some of the local police who have gone out of their way to help him, buy him a sandwich and have a chat with him.

Homelessness

M – March 2017

M has been told he cannot have his dog Rocky with him in temporary homeless accommodation. Rocky was R’s companion before he became homeless and has helped him to cope with his physical and mental health.

 

People are only invisible if we choose to ignore them is an ongoing project by Richard Keys – www.photosociology.info

References and Support Services

https://www.crisis.org.uk/ending-homelessness/about-homelessness/

http://www.nosecondnightout.org.uk/about-nsno/

https://www.theguardian.com/housing-network/2016/dec/23/homeless-crisis-report-attack-violence-sleeping-rough

Combat Stress

Crisis

Emmaus

Homeless Link

Royal British Legion

Shelter

SSAFA

Street Link

The Big Issue Foundation

 

I would like to express my gratitude to Shaneka and The Soiological Mail for publishing this essay.