Anorexia: It Costs More Than An Arm And A Leg

This is my story, which has been published today in The Sociological Mail.  If you like to read about current affairs, lifestyle, psychology and sociology, and to hear diverse viewpoints, then its worth popping over and becoming a follower. Shenaka has published all of my photo-essays, which I am very grateful for, and she welcomes new contributors.

Disclaimer: This article covers sensitive subjects which may not be suitable for certain audiences.

For just over a year I have been producing photography about anorexia, bulimia, and binge eating disorders. This is the beginning of a photographic body of work which I intend to exhibit. I have had an eating disorder since I was 17 years old, which for me has predominantly been anorexia. Shaneka from The Sociological Mail has given me the opportunity to tie these projects together and to share about my history with an eating disorder.

I can only speak from my own experience. I am not an expert in the field, and I am not medically trained, but I have a lot of knowledge about eating disorders. I think that it’s common for people with eating disorders to arm themselves with information, I most certainly have. The anorexic brain becomes distorted and narrowly focused. It does this because the brain isn’t getting the nourishment which it requires to function, and hormone production increases around hunger and appetite cues. Thoughts about food increase to the point of obsession, and for me this also includes a focus upon my eating disorder. I have spent hours of my life reading about anorexia from all sources, I do particularly enjoy peer reviewed research. There have been a few occasions when I have had to correct professionals who don’t know the correct information, or when they have tried to coerce me into doing things their way. The knowledge that I have gained has become a barrier to accepting treatment, and hand on heart, that’s why I spent those hours reading. It has been a brick wall that has kept anorexia and I within, defending ourselves against those who were assaulting us by trying to cajole, manipulate or compel me to eat. Ultimately the justifications that I have used have harmed me, because I have been compelled to have treatment under the Mental Health Act, against my wishes. My refusal to have treatment has damaged my body and my mind. The consideration of treatment, having to eat and recovery have filled me with fear.

Fear has been a recurring theme throughout my life, and I think that there is a link between my eating disorder and fear. I experienced a lot of trauma during my childhood, repeatedly and in many forms. I had a violent alcoholic step-father, and a mother that didn’t protect me or my siblings from his violence. Sadly Mum was also violent and emotionally abusive, and she was inconsistent, giving and withholding love. As a young child, I had to learn to read people, it was self-protection – “what do I need to do to stay safe today”. This hasn’t left me, and my body and mind are always alert to potential risk. Unfortunately, this even impacts upon my closest friendships. I was also abused sexually, and when I informed my mother and (the latest) step-father I was ignored. From early on I knew that it didn’t matter whether I did well or failed, I would be in trouble anyway.

I took an overdose when I was 17. I can’t tell you why because I don’t know. As soon as I had taken it I went to hospital because I hadn’t intended to do it. However, it was a turning point that led to the onset of my anorexia. My mum threw me out because I had overdosed and I couldn’t tell her why I had done so. I moved into a friends caravan and I started to unravel.

I had never heard of anorexia, bulimia or self-harm, but I started cutting myself and restricting calories. I would eat two slices of toast with mustard each day, and vomit as soon as I had eaten it. Surprisingly, I had no support from the mental health services for a couple of years, and it took until my early twenties to get diagnosed with anorexia – binge/purge subtype. By this point, I had so many difficulties that we didn’t get anywhere with my eating disorder, nor my other mental health issues. I had several hospital admissions because of suicidality and depression, and my eating disorder continued. There were short periods of rapid weight gain due to binging, which were then followed by rapid weight loss because of restricting.

When the opportunity came along for me to use amphetamine I did. By this point, I was aware that it speeds up the metabolism and reduces the desire to eat. It was successful on that level, but my mental health worsened with the development of intense paranoia. I started to distrust my friends and became so scared of them that I walked out of my flat, got a train halfway across the country, and ended up in a homeless hostel. Paranoia is a feature of my poor mental health, and I am sure that the amphetamine contributed towards its development.

I progressed from using amphetamine to heroin, which precipitated a further crisis, but one which meant I became ready and willing to take responsibility for, and the necessary action to change my life. When I got clean I knew that I had to eat because if I didn’t then I was unlikely to stay away from substances. So I started eating three meals a day. Gradually my portions increased, and I put on more weight than I needed to. I was fully aware that missing a meal was risk-taking behaviour, and I stuck solidly with the plan for 6 years. Although by now I had progressed to over-eating with regular binges. Then every now and again I would miss a meal. It really wasn’t a regular thing, to begin with, but over time those missed meals increased. I liked the sense of power, being able to overcome hunger by not eating. I experienced a strong feeling of being in control, so the number of meals that I missed increased. The period from when I started missing meals and back to intense anorexic behaviour took several years. But once I had started missing meals and experiencing the feeling of power and control that came with it, then it was inevitable that fully restrictive behaviour would ensue.

My wife and I separated, and I moved and found new employment. The work was intense, and I stopped having lunch. I didn’t eat breakfast by this point, and my evening meal consisted of a bread roll sliced in two, with half a tin of tuna on top of each piece, and sometimes with cheese on top (if I had the cheese it was toasted and lots of black pepper). I lost weight very quickly.

One meal a day went down to not eating at all. I mean nothing. I went 52 days with only fluids – I have to say I was fu)*i:g nuts at this point. I couldn’t think properly, my memory went, I couldn’t answer peoples questions because my brain had shut down. I guess it was preserving the essentials for survival and switching everything else off. Not eating for these kinds of long periods is both easy and hard. The obsession and compulsion to resist food is overwhelming and coupled with an obsession to buy and hide food, to write out recipes, watch all the tv cookery shows, and to cook for friends. I loved to smell food. At that point, just smelling food felt like it was filling me up.

The compulsion to not eat was what made not eating easy, I can’t explain what that’s like. Perhaps it’s similar to determination, but 100 times stronger. It’s a fixation, it doesn’t matter what you say to me, I will not eat. It doesn’t matter what I say to me, what I think, rationalisation – I WILL NOT EAT. My self-hatred increased over this period of “fasting” I didn’t try to fight it, just accepted that it was linked to not eating, and my self harm returned, but that’s OK because I’m not eating. With hindsight I can say that the more people tried to get me to eat, or put pressure on me too, the firmer my determination to not eat became. Again it’s that sense of control. My whole life felt out of control, except for the will that I had to not eat and to control the size of my body, and no matter how hard you tried, you could not take that away from me.

The worst experience was the self-hatred, shouting at myself, calling myself names, and the self-harm. I’ve self-harmed before, as a coping mechanism, and it’s been (for want of a better word) gentle. However, during this period I cut aggressively out of anger, rage, and hatred. I cut names into my legs and chunks out of my arms. When I look back on that time I have empathy for myself, I actually feel sorry for myself. How I treated and spoke to myself at that point was tragic, it brings a tear to my eye to think of it.

I was referred to a community mental health team and could attend their day centre. It was a safe space, daily occupation and it provided me with a connection with other people. I used the centre to help me get back into a pattern of eating, it was a slow process, and I was allowed to go at my own pace. They had no eating disorder training so they observed and encouraged but ultimately left me to sort out and manage my own recovery.

After not eating for so long the brain produces hormones to make you feel hungry, which is why there is often an obsession with food for many people with anorexia. For some of us, it also means that when you begin to eat again there can be an overwhelming urgency to do so, it certainly did for me. My food slowly increased and developed into compulsive overeating, and I put all the weight that I had lost back on, and more. It took six months to do so, and then I stopped eating again. Without effective treatment, the cycle continues.

My anorexia is extreme. I don’t restrict food like many, I completely stop eating. I still drink coffee with skimmed milk, herbal tea, and juice, but I won’t have any food at all. My mind becomes so rigid, fixated on not eating, I am either thinking about not eating, researching anorexia, or hoarding food. I spent so much money on food with absolutely no intention of eating it. It got so bad that a friend had to come around and clear my flat out. It’s such a strange compulsion, to starve and be obsessed with food. I wish there was a way that I could put into words just how strong both obsessions are. There is just nothing that I can compare it too. Hoarding is a common symptom of starvation and anorexia, which was also demonstrated by the Minnesota experiment (https://www.apa.org/monitor/2013/10/hunger.aspx).

This period of not eating lead to me, once again, being sectioned under the Mental Health Act. I had stopped eating for 56 days at this point, and I had refused all of their offers of help, including meal replacement. I really did not believe that there was anything wrong with me at all. Thing is, I have other mental health problems as well as an eating disorder, and these include anxiety, paranoia and suicidal ideation. There are times when not eating reduces or stops these symptoms. Not always, but this was a time in which my I became symptom free, and that makes me feel well. Who would want to change if they were free from other overwhelming and disabling symptoms?

I was given the option of having meal replacement drinks and building up my calories or going into the medical hospital for nasogastric feeding. I chose the meal replacement. It really wasn’t easy, and in that hospital, I only got up to 900 calories a day. I then went to an eating disorders unit as an inpatient, which I found challenging, stressful and intrusive. I tried to want to be there, but having other people in control of the food which was going into my body was too difficult. I would argue with the dietician every time that we met up, was very hostile and resistant to treatment. They got my calories up, but I then asked if I could leave. I really don’t do well when others have control over me or my food, and I don’t do well as an inpatient in hospital. I never have. It makes it so hard for the professionals to work with me. I guess that’s why I am mid-forties and still sick and suffering from an eating disorder. Perhaps control is the issue rather than the food. Feeling out of control or that others are in charge of me induces intense fear, which leads me to feel like I have to escape.

Once they had discharged me I reduced my calories and started to purge every day. There was a community eating disorder therapist whom I was referred to. She was patient with me, and we developed a plan between us. I agreed to get to a minimum of 1200 calories per day. This was to be an initial target and is based upon the fact that with 1200 calories our organs can function. It’s the level that a patient would be given if they were in a coma. The other thing that she was very clear about was that I needed to have blood pressure, blood tests, and an ECG each week. If any of these indicated that I needed medical care, either as an inpatient or outpatient then I had to have it. It was made clear that if I didn’t comply then I would be detained under the Mental Health Act. She let me go at my own pace, and I slowly introduced solid foods to replace the drinks that I was on. I have to say that she was the best therapist that I have had for my eating disorder. She had boundaries and limits, explained these to me, and then worked with me as an individual. She understood how strong my control issues with regard to food were, and helped me to make progress. I got to 1500 calories per day, was eating solid food most of the time, and my physical health was improving.

Unfortunately, I got a sudden bout of depression and tried to kill myself. Whilst in the psychiatric hospital I started to binge. The staff on general psychiatric wards in the UK are generally not eating disorder trained, and they do not help a patient with anorexia to either eat or build up eating slowly. Having so much access to food after a long period of starvation sent those hormones wild again. The hunger was intense, and the amount of food that I would eat left me in pain all of the time. After eating the hospital dinner I would call up a take away, order a meal deal for two or three people, and sit and eat all of it. There was no real enjoyment of the food, just an insatiable appetite and an inability to stop eating once I had begun.

I find it so sad that I have been through all of this, and the harm that my poor body has had to cope with. Getting the right treatment for eating disorders in the UK does not always happen. I have no specialised eating disorder support at the moment, and this is a common issue for many sufferers. Part of it is the area that I live. In the UK each individual health authority decides how it is going to spend its budget, and which services it will commission. Here they funded one community eating disorder therapist to cover the whole county. She has changed role recently and hasn’t been replaced, and neither has the dietician who left last year.

So how did I get to this point on this occasion? My compulsive overeating following the last hospital admission led to me developing diabetes. I am terrified of the doctors and the hospital, so I looked into the research results from Newcastle University into reversing type two diabetes. They put their patients onto a very low calorie diet, which is medically supervised at all stages. The diet lasts for eight weeks, and then other foods are slowly introduced. The results are astounding. Type two diabetes can be reversed. Having reviewed the research results I decided that I would create my own very low calorie diet so that I could reverse my diabetes, which I have managed to do. However, the reduction in calories soon triggered the anorexic thoughts and behaviour, and I lost control.

Something was different this time though – my photography studies. I love photography and I love studying with the Open College of the Arts. My photography has developed considerably, and so has my contact with people. I can walk up to strangers on the street and ask if I can photograph them, and I have photographed at many events and around large groups of people. I feel safe with a camera in front of my face, and the whole experience is mindfulness in action. Its like I slow down, real slow, I look and see all that is around me, completely focused, present and in the moment. In January I returned to not eating anything at all. This time I went for 18 days. During that time my motivation to study disappeared and I became depressed. I couldn’t live with the impact it had on my photography so I began to eat again. Not a lot at all, but it was enough to make a difference. This has also been a time where not eating/severe restriction has had a positive impact on the reduction of other mental health symptoms. I haven’t had suicidal thoughts for some time, my anxiety has reduced, and so has the paranoia to a degree. I still get PTSD symptoms, but these are more manageable when my other symptoms are low. My energy increased significantly as well. Lack of food intake can mean that the body produces more adrenaline and cortisol, and this increases energy. To be honest it has been an absolutely amazing time that I have really enjoyed.

I haven’t really worked with my psychiatric team, and I have done the absolute minimum that I could get away with in order to stay out of hospital. I think that I have made it look like I am working with them and want to get well, but that hasn’t been my truth on the inside, until….

I went on holiday to London. It was to be a three week holiday so that I could be a tourist, make the most of the sights and scenes in London, go to galleries, museums, gardens and theatres. It was also an opportunity for me to meet up with my fellow students. Sadly, after just a week I became really ill. I felt dizzy, sick, and thought that I was going to pass out. I got to the point of not being able to function. My motivation to study and for photography went. Then a couple of weeks afterwards I was with a close friend, we had been out in his car for about an hour and we went for a coffee. My blood pressure dropped and I was unable to walk. These incidents frightened me into realising that I need recovery and I need it now.

Recently I have been making progress, and my photography has been an important part of that process, the enjoyment of photography is my motivation for change in a way that fear of dying from anorexia is not. I now know that if I do not make a drastic attempt to recover then I will suffer more serious health problems, be unable to take photos, and risk dying. Anorexia has the highest death rate as a proportion of sufferers than any other psychiatric disorder.

People can and do recover from eating disorders and anorexia. I was aware of the statistics about partial and full recovery, as well as those who never recover, but now I have started to attend an online peer support group for people with anorexia and bulimia I have met people, who I relate to, and who are in recovery. Meeting others who are no longer affected by the symptoms of their eating disorder gives me so much hope. Peer support isn’t the only thing that I need. Although I have a psychiatric and medical team, they are not eating disorder trained, and they have not replaced their dietitian or therapist. However, I have managed to find an experienced eating disorders therapist, who is also experienced in nutrition and diet. I grew up in a family of chefs, I know what a nutritious and balanced diet is, so why can’t I just do it? I am afraid of food, there are very few foods which I eat, I am obsessed with calories. I need help to overcome these difficulties, and I also need someone whom I can build up trust with so that they can manage my meal plan until I am able to put things into practice. I need to trust them to manage the calories for me. It’s a big part of letting go of controlling behaviour.

Eating disorders are not about food, even though the symptoms suggest that they are. Eating disorders are about control. By controlling my food intake, weight and body shape, I can  avoid or suppress fear, feelings, circumstances and the uncertainties of life.

Yesterday was a very big step for me. I consider it to be the first day of my recovery. Most people with anorexia go through intense obsessions with foods, watching TV shows about foods, reading recipe books, cooking for others and not eating, and some of us hoard food. Over months I spent hundreds of pounds buying food that I had no intention of eating, and hiding around the house, even though I live alone. Before I could have friends visit I informed them that they were not to touch the hoarded food. Yesterday I sorted through it, binned what was out of date, and have bagged the rest for the local food-bank. A momentous step for me, and I promise you it wasn’t easy. I cried, I felt angry, and I needed to reach out for support. But I did it. I am proud of myself for doing so, so proud that I bought myself some flowers. I earned them (written three weeks ago).

I accept that this is not going to be an easy process and that it will take time. There will be times when my emotions feel too intense and overwhelming, and the regime of three meals and snacks is frightening. With help, I have introduced a couple of new foods, cereal, and jacket potato with tuna or chili. The rest are a few select foods that I feel safe with. There are times when I feel so out of control, which isn’t surprising. Change does mean letting go of the old control measures and trying the unfamiliar. The amount of emotion that I experience around the times that I am eating now has been surprising, and often very intense. But I want to study, I want to walk around and take photos, and I cannot have that without recovery. Recovery is possible, which I now know because I have found a community of recovering people.

If you have an eating disorder or think that you may do, and are not currently receiving support then please seek help. Your doctor is important because there are so many health complications with eating disorders. Perhaps you can talk to someone who you trust and ask them to go to the doctors with you. There are also eating disorders charities in many countries around the world. They can answer questions that you may have and provide you with information and support. There are also many peer support groups around the world as well. We all have to find our own way, but we never have to do this alone.

Thank You for reading and best wishes, Richard.

 

UK Based Eating Disorder Charities

BEAT

Men Get Eating Disorders Too

Men and Boys Get Eating And Exercise Disorders Scotland

International Eating Disorder Charities

United States

NEDA

Canada

NEDIC

India

The Minds Foundation

Australia

NEDC

Peer Support groups

Anorexics and Bulimics Anonymous

Smart Recovery

Over-Eaters Anonymous

Eating Disorders Anonymous

Two vlogersI have found useful who are in recovery or recovered

Megsy recovery

Tabitha Farrar

Gun Control Versus Mental Health

The victims of gun crime and their family and friends are in my thoughts and prayers.

I am astounded by Donald Trump’s belief that gun control is not the issue “We are committed to working with state and local leaders to help secure our schools and tackle the difficult issue of mental health.”

It is reported that “One in six U.S. adults lives with a mental illness (44.7 million in 2016).” Source link.

In the UK mental health precedence is slightly higher according to statistics from the government and also from MIND, the national mental health charity. “One-in-four adults and one-in-ten children experience mental illness during their lifetime, and many more of us know and care for people who do.” Source link

The USA has the highest rate of gun homicide in the developed world, 16 times higher than Germany.

This despite the reality that the mental illness rates per capita are similar, and some countries have a higher prevalence of mental illness. Clearly, mental illness is not the problem.

Since 1968 more Americans have been killed by other Americans as a result of fire arms, than have been killed in all of the wars the US has been involved in since the founding of America. “Since 1968, when these figures were first collected, there have been 1,516,863 gun-related deaths on US territory. Since the founding of the United States, there have been 1,396,733 war deaths. That figure includes American lives lost in the revolutionary war, the Mexican war, the civil war (Union and Confederate, estimate), the Spanish-American war, the first world war, the second world war, the Korean war, the Vietnam war, the Gulf war, the Afghanistan war, the Iraq war, as well as other conflicts, including in Lebanon, Grenada, Panama, Somalia and Haiti.” Source link

The death rates are horrific. In 2015 over 13,200 US citizens were murdered by a gun “All shootings: Some 13,286 people were killed in the US by firearms in 2015, according to the Gun Violence Archive, and 26,819 people were injured [those figures exclude suicide]” Source link

In 2015, four times as many Americans were killed by their fellow US citizens than had been killed by terrorists between 2001 and 2013, a twelve year period. “According to the U.S. State Department, the number of U.S. citizens killed overseas as a result of incidents of terrorism from 2001 to 2013 was 350.

In addition, we compiled all terrorism incidents inside the U.S. and found that between 2001 and 2013, there were 3,030 people killed in domestic acts of terrorism.* This brings the total to 3,380.” These statistics include the horror of those killed in September 11th. Source link

In the UK, in between April 2014 and March 2015, 19 people were murdered with a firearm. “There were 19 fatalities resulting from offences involving firearms in the year ending March 2015; 10 fewer than the previous year and the lowest since the series began in 1969.” Source link

Despite having similar rates of mental illness, the gun crime and death rates are significantly higher in The United States.

This is a tragedy. It is also shameful.

The Bill of Rights Second Amendment  right of the people to keep and bear arms  was signed on December 15th 1791. This right was granted as a means of protection by a regulated militia to protect the state. Source link

This Right is outdated and is no longer a protection for the State nor the citizens of The United States. The second amendment has become the number one means by which Americans can kill Americans.

It saddens me to know that there is too much personal and political pressure to maintain the right to gun ownership. How many more American individuals, families, friends, communities, colleagues will have to tragically be killed and suffer and grieve before Americans realise that mental illness does not cause gun crime, access to guns causes gun crime.

 

With many thanks to Shaneka, and all at The Sociological Mail for publishing my essay.

 

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.