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Jaime A. Heidel - The Articulate Autistic

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Are you an autistic person who has been in an abusive romantic relationship? I am, and I know of many other autistic people who have been through this, as well. While anyone of any race, gender, sexual identity, religion, or ability can find themselves in an abusive relationship, there are certain groups of people who are more susceptible to it than others.

Since the only experience I can speak on with any true authority is one I've faced myself, I'd like to focus on autistic people and why we might be more vulnerable to partner abuse.

Disclaimer - Abuse is Always the Fault of the Abuser, Never the Abused

Before I begin, however, I'd like to point out that I'm not victim-blaming in this piece (or in any of my pieces). I'm simply stating the reality of how the autistic brain works in a neurotypical world, and how that has a profound impact on every aspect of our lives, including dating and romantic relationships.

Just because we have traits that may make us more of a target for abuse, this does not mean that the abuse itself is ever the fault of the victimized person. Someone who preys on the vulnerable and abuses them is always the problem, and just because some autistic traits make it "easier" for abusers to take advantage of us doesn't mean we brought it on ourselves.

In fact, I can think of nothing more disgusting than a person who sees another human being who may be more trusting and innocent and then purposefully choosing that person to abuse.

So, what makes autistic people more likely to be targeted for abuse?

Autistic people, by and large, say what we mean and mean what we say, and our default setting is to go out into the world, at first, believing everyone else is the same way. I know when I was younger that I truly had no idea how many people in the world misrepresented themselves on a daily basis; either for the purposes of cruelty, to further their own social agenda, or because they'd become so entrenched in their own false persona, they started to actually believe it. No matter the case, taking people at their word can make autistic people a target for abuse because we may not think to question words or behaviors that a non-autistic person might look at through a more suspicious, critical lens.

Autistic people are literal and rely heavily on words to receive information from other people. This can tie into taking people at face value in that we listen to the words, believe the words, and act according to the words. However, we may miss changes in vocal tone, facial expressions, or body language that could clue us into emotions that do not match the words being said.

Using myself as an example:

I can usually tell when something is "off" with another person because the words they are using don't match the "vibe" they're putting off, but I won't always know what it is that seems off or why it's off, which has gotten me into situations where I was in way over my head before I realized I was in danger.

Subtle red flags that a non-autistic person might pick up such as an abusive vocal tone, a disgusted facial expression, or a threatening body posture may be missed by the autistic person whose brain is primarily focused on words.

(Although those of us with complex post-traumatic stress disorder MAY pick up on all of these things and even question them, the abuser may explain our concerns away with words, so we remain a bit emotionally off-balance, questioning our perception of reality. This is what is known as "gaslighting", and an abuser can and will do that to anyone they've chosen to target, regardless of neurotype.)

We May Subconsciously Attract the "Misfits" of the World

As an autistic person who grew up in the '80s and '90s with no diagnosis and no support, I didn't know how my brain worked or even that it worked in such a drastically different way from the non-autistic people around me. I just knew people didn't like me, didn't want me around, didn't believe me, and thought of me as a strange, unknowable creature that was best avoided.

I didn't understand why, but I did know that I never wanted anyone else to feel that way, so when I saw others in the "misfit" and "outcast" category, I tended to befriend them. I also tended to understand them and they me very quickly, and it almost felt like magic when it happened!

The problem was, in addition to attracting other kind-hearted neurodivergent people, I also attracted abusive people. They all seemed the same to me; people like me, people from the "same planet", so to speak, just as misunderstood and abused as I was-or so I thought.

We'd skip the small talk altogether, and have deep, philosophical conversations and trade trauma stories like Pokémon cards. Friendships and romantic relationships formed fast, rode high, and dropped like a flaming meteor.

Those connections were the only type of connections that ever felt truly genuine to me. Now I know that was co-dependency and trauma-bonding.

Authentic, stable relationships usually take time to build, small talk and boring stuff included, but my younger autistic self did not know or have a prayer of understanding that at the time, which left me vulnerable to people who would take advantage of me.
"Love Bombing" - An Abuse Tactic That Everyone Should Know About
I don't think fast connections are always bad or potentially abusive. However, abusive people WILL do something called "love bombing" that can sweep you off your feet and have you met, "in love", and living together in a very short period of time before you even know what happened.

This is an abusive tactic meant to create a drug-like "high" around that person to keep you addicted to them, so even when they drop the act and start mistreating you, you stay, hoping they will "change back" into the person they used to be, when what they really are is an abusive person who tricked you into getting into a relationship with them, and the side you see after the love-bombing phase is who they were all along.

We Are Often Used to Being Uncomfortable

Autistic people, especially those who are undiagnosed and unsupported are more likely to be misunderstood and mistreated both at home and at school. Sometimes, this is the result of chronic misunderstandings related to the difference in the way autistic and neurotypical people communicate-not outright abuse. However, this type of childhood environment does lead to a chronic state of stress for the autistic person that our brains and bodies have to automatically adjust to if we are to survive our formative years.

This can make us wired for mistreatment later in life because we've been conditioned to live with physical, mental, and emotional discomfort to the point where we may not even recognize it for what it is until the abusive behavior escalates from subtle and occasional to an onslaught of verbal and physical violence.

We May Not Know We're Uncomfortable

The inability to recognize our own physical and emotional discomfort due to alexithymia (the struggle to identify and describe one's emotions) and poor interoception (recognizing physical needs such as hunger, thirst, need for the bathroom, etc.) can also make autistic people more vulnerable to abuse.

When you're not aware of how you feel in your own body and brain, you may not recognize someone's covert abusive behavior until it escalates to the point where you are at risk for physical and emotional damage.

Not to delve too deeply into politics, but I'm 100% for UBI (Universal Basic Income) for this exact reason. Autistic people are grossly unemployed and under-employed, and this can keep us financially dependent on toxic people just to survive. Whether it's a hostile work environment, a bad roommate situation, a toxic family dynamic, or an abusive romantic relationship, many of us do not have the luxury of simply "walking away" from these situations and surviving without assistance. When financial dependence is involved in an abusive relationship, it complicates things that much further and makes it even more difficult to escape.

Autistic people don't cope well with change. Someone who didn't fully understand how incapacitating change can be for some autistic people may not believe that it would be a factor in continuing to stay in an abusive relationship, but I can tell you, from experience, that it definitely is. Change, even positive change, can be paralyzing due to anxiety and executive dysfunction. It's no small thing to end a relationship, even an abusive one, especially if there are assets, moving, police protection, and potential homelessness to consider.

This is a punch to the gut to even write, but the stark reality is, there are those of us who have ZERO emotional or financial support. We may not be able to secure stable employment, drive a car, or successfully navigate the complicated ins and outs of the neurotypical social arena, so the thought of leaving the one person who is essentially keeping us alive by sheltering us, driving us to work and doctor's appointments, and easily making friends and connections can feel like pulling the plug on a hospital patient toward the end of their life. In cases like this, it can be just as terrifying to leave as it is dangerous to stay.

The Takeaway

Autistic people are more susceptible to abusive romantic relationships and may be forced by their circumstances to remain in them. This problem will not be solved with hotlines and shelters alone. The fact is, autistic people need to be understood, supported, accommodated, and listened to; the sooner in life, the better.

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Why Autistic People May Be More Susceptible to Abusive Romantic Relationships - Jaime A. Heidel - The Articulate Autistic

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Are you an autistic person who has been in an abusive romantic relationship? I am, and I know of many other autistic people who have been through this, as well. While anyone of any race, gender, sexual identity, religion, or ability can find themselves in an abusive relationship, there are certain groups of people who are more susceptible to it than others.

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The combination of dementia and domestic abuse is all too often overlooked

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The combination of dementia and domestic abuse is all too often overlooked

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Across the world, domestic abuse affects one in three women, and every three seconds, someone develops dementia. Yet despite the prevalence of both these issues, little attention is given to what happens when they are combined. As a result, older people living with dementia are often the forgotten victims of domestic abuse.

Our research found that dementia and domestic abuse coexist in many different relationships. These include either the care giver or recipient being abusive, or cases where an older person with dementia experiences abuse from an intimate partner or adult relative.

Dementia can result in a lack of inhibition. So whereas previously a victim-survivor may have deliberately hidden their abuse from people, having developed dementia they may talk openly about their experiences, causing a perpetrator to be fearful of public exposure or prosecution. In one case, the abusive husband behaved in a hostile and aggressive manner towards anyone who entered the family home as a tactic to discourage visitors and isolate the victim.

This kind of diminished social contact is not unusual among people with dementia, and is another factor which can increase vulnerability to various kinds of abuse - physical, financial, sexual and psychological.

We also discovered that when a perpetrator becomes a carer for a partner or family member with dementia they can feel extremely resentful that their own needs are no longer prioritised. This can lead to them trying to gain control through manipulating family members, friends and professionals.

On the other hand, in situations where it is the perpetrator who has dementia, the risk of harm can significantly increase, particularly if the victim-survivor is their primary carer. Providing intimate care means close physical contact, making it harder for victim-survivors to keep themselves safe.

Even in previously healthy relationships, a person living with dementia can begin to behave abusively. We observed this in one of our case studies, where an elderly women living with dementia become abusive towards her husband as a direct result of her condition. He told us:

She's not always been like this you know. She's always been very religious, a loving person, not argumentative. When it comes to her medication, she will be pacing about the house all night, demanding I give it to her. I try and explain [that she's already taken it] but she gets frustrated and angry, and one time she threatened me with the scissors. It's not like her but she gets confused and agitated.

When it comes to dealing with these complex issues, our research at Aberystwyth University's Centre for Age, Gender and Social Justice indicates a cultural divide between health and social care services on one side, and domestic abuse services on the other. There needs to be more inter-agency communication and training when it comes to understanding the causes of abuse, and how to respond to it appropriately when dementia is involved.

Undetected abuse

In many cases, we found that signs of domestic abuse are either overlooked, or seen as a one-off incident, rather than a pattern of coercive behaviour. There is also a tendency to treat the abuse as unintentional harm or neglect, thanks to a general assumption that families and partners always act with compassion towards the older person. Yet the reality is often far from the idealised picture we have of care and support in later life.

To assume any harm and abuse is the consequence of the stressful demands of care-giving minimises accountability on the part of the perpetrator and fails to consider the criminal nature of the behaviour. Coercive and controlling behaviour often also remain undetected.

Health professionals described feeling uncomfortable referring clients to agencies labelled as "domestic abuse services", as they believed it could inflame problems within a family coming to terms with dementia. And while domestic abuse specialists felt they had a role to play, they acknowledged a lack of understanding about dementia, especially in relation to safeguarding options.

It seems clear then, that a closer partnership between domestic abuse specialists and health and social care is required. This should involve a significant improvement in practice and policy to recognise and tackle the coexistence of dementia and domestic abuse - so that society is better placed to protect victim-survivors of all ages.

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The combination of dementia and domestic abuse is all too often overlooked

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Across the world, domestic abuse affects one in three women, and every three seconds, someone develops dementia. Yet despite the prevalence of both these issues, little attention is given to what happens when they are combined. As a result, older people living with dementia are often the forgotten victims of domestic abuse.

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Painting Painting has been found to be particularly valuable in helping people living with dementia to communicate in a non-verbal way, when verbal communication is more difficult, or lost. Similarly, painting and drawing can allow us to use their power of imagination which can make people living with dementia to feel more connected to the world and people around them.

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The Arts in Healthcare – Health Benefits

There has been increasing use of the arts in healthcare over the last 20 years. This has resulted in a number of health benefits for patients – including reduction in blood pressure, heart rate, length of hospital stay and perception of pain.

For patients with mental health problems benefits have included improved communication skills, self esteem and behavioural change.

That’s according to a 2004 review of research findings for the Arts Council England

Art for People with Dementia – Three Approaches

Three main approaches have been used with people with dementia (you can find more information on our choice here):

Observing and discussing art work, like the Meet me at MoMa project at the Museum of Modern Art in New York

Creating art work, for example the Equal Arts projects in care homes in the North East of England. These are described in the Creative Homes report from the Baring Foundation, National Care Forum and National Association of Activity Providers for Older People.

Observing and discussing art work and then creating art work. This combines viewing and making art. Like the Viewing Together  project at the  Nottingham Contemporary and Dulwich picture gallery.

These focus on enjoyment and being 'in the moment,' being creative and making social connections.

Does Art make a difference for People with Dementia?

A tentative answer would be yes – and for both observing and creating art. Both people with dementia and their carers often report benefits, such as improved quality of life.

For example, an 8 week viewing and making art programme suggested well being benefits that included feeling more socially included, self reports of enhanced cognitive capacities for people with dementia and an improved quality of life.

However, the evidence so far isn’t as robust as it might be. For example the research so far has often been through local initiatives, in different settings (from care homes to galleries) and for varying lengths of time. Sometimes there have been different objectives (some more creative, some more therapeutic), different types of art intervention (painting, drawing or different types of craftwork) and varying degrees of evaluation (with qualitative rather than quantitative approaches tending to produce more positive results). This makes it difficult to compare like with like when reviewing the research undertaken so far.

A further question is whether it is the art or the social interaction involved or a combination of the two which is having the effect.

The focus of research has also, perhaps understandably, been on the individuals participating and their carers, rather than on any wider impact or benefits. For instance there hasn’t  usually been any health economics or social return on investment analysis.

Art and Dementia Research – The Next Steps?

The Dementia and Imagination research study aims to address some of the gaps in the evidence. In particular, we’re:

Employing more comprehensive research methods, with a common approach across three different settings (people with dementia in care homes, in an NHS assessment unit and living in the community).

Looking at the wider impact, for communities where people with dementia live.

Assessing the financial implications of art interventions.

Through our research we hope to improve the evidence for the use of art with people living with dementia  - and to provide findings of interest and value to people with dementia and their carers, artists and health and social care professionals.

We also aim to provide art work which challenge the stigma of dementia and showcase the creative abilities of those with this condition.

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Arts 4 Dementia | Empowerment through artistic stimulation

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Time: 2pm - 4pm Venue: Central Saint Martins, 1 Granary Square, London N1C 4AA Contact: emily@arts4dementia.org.uk or call 020 3633 5401 Download Flyer
Start the new year by becoming an Art Student for a Term!

Having teamed up with the UK's leading art and design university Central Saint Martins in 2021 and 2022, we are delighted to be back for Term 3 of this groundbreaking programme! Join us for a series of practical art workshops for people with early-stage dementia or mild cognitive impairment and their companions.

Alongside their Programme Director for Art, students from BA Fine Art will act as facilitators using skills and techniques developed during their time at Central Saint Martins. This will be an opportunity for participants to engage in a variety of visual art practices. We will be using both traditional and digital skills but no previous experience is required.

Art School is a space for creative freedom and communal making. These workshops will offer an Art School experience helping you to discover your inner artist. The workshop is free of charge, no previous experience is needed, it's all about giving it a go!

Art School 2022

Please note:

This workshop series is for people with early-stage dementia or mild cognitive impairment, each with a companion.

To participate, you will need to register by phone in advance.

Numbers are restricted so, if you may be interested in joining us, please email emily@arts4dementia.org.uk or call 020 3633 5401 as soon as possible.

We regret that we can only accommodate those who expect to be able to attend all 5 sessions from Feb 25 - April 14.

Art materials will be provided.

Need another reason to join Art School? Read some testimonials from last year's programme:
"I'm really excited about being an art student on this project. I thought my first drawing experience was so enjoyable and it did such a great job bringing what I term as therapeutic calm, to my Brain. While on the workshop I literally forgot the stress related issues, which have been occupying my mind."
"I'm learning that art is not just about paintings, the student facilitators give everyone time to take part and have their voice heard. I'm learning that I can express myself in art"
"It is impressive that people from such a prestigious college should give up their time to help people with this distressing and annoying condition which makes me exasperated with myself and intolerant of others...being encouraged to do something practical really helps. Now there is a purpose to Fridays"

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NEW: Art School with Central Saint Martins 2023 | Arts 4 Dementia

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Time: 2pm - 4pm Venue: Central Saint Martins, 1 Granary Square, London N1C 4AA Contact: emily@arts4dementia.org.uk or call 020 3633 5401 Download Flyer Start the new year by becoming an Art Student for a Term!

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ARTICLE IN BRIEF

4 A New York City exhibit featured artwork by people with neurodegenerative diseases, including dementias. Experts in frontotemporal dementia explained why visual creativity in the setting of degenerative brain disease is not unusual.

NEW YORK CITY-Even before he was officially diagnosed with Alzheimer disease in 1995, the paintings of William Utermohlen, a Philadelphia-born artist who spent most of his life in London, began to change.

"His technique started to transform in 1991-1992, with the paintings reflecting sadness, as he tried to hang on to reality," said his wife, Patricia Utermohlen, an art history professor from London.

Future portraits and drawings depicted the gamut of emotions that he was feeling as he descended into dementia - from sadness, anger, and puzzlement to anxiety, emptiness, and resignation, she said.

Speaking here at a lecture and exhibition of Mr. Utermohlen's art at the New York Academy of Medicine, Mrs. Utermohlen said, "Think of his great courage as you look at this series."

Prior to 1990, Mrs. Utermohlen said her husband's portraits, drawings, and still lifes were marked by intense colors, engaging spatial arrangements, and powerful emotional connections to friends and family.

A 1967 self-portrait, drawn when he was at the height of his creativity, for example, portrays powerful features, his expression marked by pride, she said. But as his brain began to degenerate, everything changed.

"Bill is there, but not there in one picture, his tilted chair empty," she said. "Once his disease really kicks in, his eyes are tortured, terrified. By 1996, self-portraits emphasize his forehead and scream with pain."

In 1997, he portrays himself in a cage. In another self-portrait, he places a saw by his head, perhaps thinking of the autopsy that his physicians have told him will offer the only definite diagnosis of his disease, Mrs. Utermohlen said.

In another portrait, he is sad, she said, while in yet another, he looks cross, "asking why did this happen to me?" In still another, he is puzzled, she said.

In his final self-portrait, created in 1999, "his head is cracked and empty," she said. As Patrice Polini, MD, writes in "William Utermohlen - The Late Pictures 1990-2000," the head is drawn and erased at the same time - dismantled as it is being structured. It is as if the artist has assimilated his drawings with his destiny - to subsist while disappearing.

Born in 1933, Mr. Utermohlen is now in a nursing home and no longer paints.

VISUAL CREATIVITY AND DEGENERATIVE BRAIN DISEASE

Bruce L. Miller, MD, Professor of Neurology, the A.W. and Mary Margaret Clausen Distinguished Chair of Neurology, and the Clinical Director of the Memory and Aging Center at the University of California-San Francisco School of Medicine, said that visual creativity in the setting of degenerative brain disease is not unusual.

"Mr. Utermohlen is a case in point. People express what they can despite their disease," he said.

Early Alzheimer disease mainly affects the right parietal lobe, "the non-dominant hemisphere that is the dominant hemisphere for artistry. An injury not much bigger than a thumbprint can affect spatial attention, global gestalt, and internal representation. Art may become more abstract or surrealistic, with vague images," Dr. Miller said.

As advanced Alzheimer disease sets in, the left parietal lobe, which plays a role in linguistic abilities and symbolism, is also affected, he said, recalling one patient who "could barely draw and couldn't write at all but could still make symbol-like pictures on the page."

Other types of degenerative brain disease, too, can affect a patient's artistic abilities, Dr. Miller said. In fact, patients who never drew in their lives may suddenly have extraordinary new abilities.

Dr. Miller has studied several patients with a subtype of frontotemporal dementia known as semantic dementia, which is associated with marked anomia. Symbolic and linguistic functions are lost, but visual representation is spared.

"These patients lose their symbols, so if you ask them to draw a bird or a cat, you get a prototypic animal. Color abilities are also affected, so they may color a frog pink," Dr. Miller said.

Another strange feature: Patients can copy with incredible precision. "These patients may not know what a camel is, but they can precisely copy one on a page."

Remarkably, most of the patients who began to draw or paint after the onset of dementia had no prior interest in art, Dr. Miller said. "One of my patients just sat down and felt compelled to draw."

Since this type of dementia is bitemporal, the art will reflect which temporal portion is harder hit, he said.

"The degree of tissue loss in the right temporal lobe and the right amygdala is directly related to negative emotions. I had a patient with severe right focal temporal lobe disease who drew all happy faces," Dr. Miller said.

COMPULSIVE BEHAVIORS: STIMULUS FOR ART

Often, the compulsive behaviors associated with frontotemporal dementia serve as a stimulus for the artistic expression, he added, with paintings drawn over and over until the artist is satisfied with the result. "The way this patient drew the same emotions over and over is chilling, but never negative."

Researchers still don't know why some patients with degenerative brain disease can produce such extraordinary art, Dr. Miller said. In early Alzheimer disease and semantic dementia, he theorized that degeneration of the left dominant, bullying hemisphere allows the nondominant right, visual hemisphere to flourish.

Jeffrey L. Cummings, MD, Director of the University of California-Los Angeles Alzheimer's Center, said that studies of Mr. Utermohlen and other patients "bring the interface of science and art to a whole new level."

Pathologic and imaging studies of these patients offer new insight not only into the creative process, but also into how the brain works, he said. This, in turn, could also offer clues that could help in the earlier diagnosis of patients with degenerative brain disease.

"Many, but not all, patients with mild cognitive impairment develop Alzheimer disease," Dr. Cummings said. "We need to know who is at risk. Studies of Mr. Utermohlen and other patients can help us to answer these kinds of questions."

The exhibition and lecture was hosted by the Alzheimer's Association, New York City Chapter, and supported by Myriad Pharmaceuticals.

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ART PORTRAYS DESCENT INTO DEMENTIA : Neurology Today

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ARTICLE IN BRIEF 4 A New York City exhibit featured artwork by people with neurodegenerative diseases, including dementias. Experts in frontotemporal dementia explained why visual creativity in the setting of degenerative brain disease is not unusual.

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Domestic violence and elderly dementia sufferers

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Domestic violence and elderly dementia sufferers

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vulnerability of autistic people to abuse

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vulnerability of autistic people to abuse

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This post was originally written for autistic people,
but is probably relevant to a larger audience

Autistic people are at risk of entering into unhealthy/abusive relationships because of their difficulty judging the intentions and character of others (theory of mind), and not being able to compute the contrasting presentation of someone who is being nice and kind one moment, and then controlling or mean the next.*

To put it bluntly, we can be pretty naive, and have a tendency to explain red flags away, or fail to properly contextualize social information in the first place. This is linked to the weak central coherence theory, which is linked to theory of mind in autistic people.

As such, in order to make sure your (future) relationship is healthy, I have outlined a few things to look out for, and things to remember when it comes to recognizing an abusive-or just plain unhealthy-relationship.

First off, I think we have to be careful about what we mean by abuse. At the same time, this (self-)doubt about what constitutes abuse is exactly why so many victims tend to explain the abuse away, or link the abuse to a cause and conclude they just have to refrain from certain behaviors so as not to get abused.

It is important to remember that all humans can act badly when provoked, but an abuser has a set pattern of harmful behaviors intended to have power over someone else, usually a partner.

Triggers or abuse?

It is likely that your partner made you feel wonderful initially. Things may not be so wonderful now, but you have invested in this relationship, and want things to be better.

My advice is to ask yourself, if you met your partner last month, would you choose to be with this person? And perhaps more importantly, what has your partner's pattern of behavior shown? Autistic people tend to be good at systemizing (the drive to analyze or construct systems) and pattern recognition; so if you get confused by individual cues, focus on patterns of behavior, and ask yourself the following questions:

How does my partner make me feel now?

How free do I feel to be myself around my partner?

Is my partner exerting (significant) control over me?

Note however that triggers and abuse are not necessarily mutually exclusive. Indeed, many abusers do have many triggers. If your partner is being triggered and is willing to go to therapy for it, the relationship may be saved. If they decide they do not want therapy or even that they do not have any problems-that you are the problem-it may be wise to get away from this person, regardless of whether you choose to call their behavior abuse or not.

If you end up feeling worthless, it is not a conducive relationship-for you at least.

Example 1 - Abuse with intent

Sarah is married to a Gerald. When she first got married to Gerald she asked him if his ex-wife and him had sex in his bed, as it was important to her that her and Gerald have their own bed she expressed. Gerald said no, he bought the bed after the relationship ended and indicated that he thought it was disrespectful to sleep in the same bed that he and his ex slept in. Two years later Gerald saw a bed sale and told Sarah to buy them a new bed, as theirs was really old. Sarah asked what he meant, as he indicated two years earlier that the bed was relatively new. Gerald started screaming at her, "You are such a fucking whiner that I said that just to shut you up! What the fuck is your problem? Forget about it, you stupid cunt!"

Counterexample 1 - Abusive effects of triggers

Linda is in a serious relationship with her boyfriend, Henry. They are quite happy generally, but due to childhood trauma Linda experienced, she is prone to verbal outbursts when triggered. She yells when she feels misunderstood, not heard, or ignored-basically anything that makes her feel invisible. Her outbursts are hard on Henry, but Linda never resorts to insults; she simply has challenges dealing with her triggers. In addition, Linda and Henry go to couples therapy to learn how to communicate in a loving and supportive way.

Now, a relationship as presented in the counterexample may be too challenging for a person to endure. But it's important to note that Linda is working through her personal issues. Whereas Gerald in example 1 is abusive in an attempt to control; he abused his wife to the point where she no longer dares to challenge him. Not only that, but Gerald is resistant to therapy. So while the behavior can seem quite similar, the underlying motivations are entirely different; one is prone to dysregulation but wants to improve, while the other is malicious and feels justified.

Sporadic abuse

Abusers do not abuse all the time. I think this is where abuse victims, in general, may get confused. One may think the relationship has its challenges, but that ultimately their partner has their best interests at heart. And while that may be true to a degree, it does not detract from the fact that abuse is going on.

Of course, human beings are complex. They do not tend to be all good or all bad. An abuser may be nice some of the time or even most of the time, but still partake in abuse the other times. Abusers also tend to abuse behind closed doors, while being nice and keeping up appearances with others. This can take the form of a deliberate-and potentially malicious-façade where your consciously maintains a division between niceness in public and lack thereof behind closed doors, or it can be because your partner uses up their social energy at work, and are prone to dysregulate or violently unwind at home.

As such, one can easily justify the abuse by focusing on-and even extrapolating from-the idea that your partner is a nice person at heart, and means well. Again, while this may be true, don't let that be an excuse for harm-either physical or psychological-done unto you.

Bringing it home

Not only do abusers tend to keep up appearances to other people so as to maintain good social standing and not become ostracized, but abusers may sustain control throughout the day in order to keep up appearances, and then drop those controls at home and unravel.

This is problematic, because all anger/anxiety the abuser builds up throughout the day is then released at home, where no one else can see it. As such, those closest to the abuser get to bear the brunt (i.e. endure all/most of the abuse).

Don't believe the mask

Most abusers have two faces: the one they wear in public, and the one they wear at home. Only those close to the narcissist or abuser have any idea there is more than one face.

The abuser may utilize this schism to their advantage.

Example 2 - Preparing for social occasions

Gerald has quite a malicious routine when it comes to inviting guests over for dinner. He makes Sarah clean the house and yells at and belittles her throughout the process. At this point Sarah is anxious and no longer wanting to accept guests. Shortly before the guests' arrival Gerald takes a shower so that Sarah is forced to invite the guests in. This is particularly uncomfortable for her not only because she has to try to keep up appearances, but the guests tend to be exclusively Gerald's friends who Sarah does not know. Sarah is not allowed to have friends over for dinner. When Gerald emerges, he is the warm and friendly guy his friends know him to be-not knowing the routine that occurred before their arrival.

Not only does Gerald exert a tremendous amount of control over Sarah's well-being, but in keeping up appearances outside of the domestic household, he makes it unlikely for Linda to be believed if she were to tell anyone about Gerald's behavior at home. After all, Gerald is a splendid guy.

The nice tactic

One tactic some abusers employ is to get the victim to put their guard down by being nice. This gets the victim to be more open and more willing to give information, which can then be used against them. Abusers may employ this tactic to instill a false sense of security and comfort, not only to acquire information but also to inflict greater hurt when they attack out of the blue. This ultimately results in the victim cultivating a sense of alertness for danger at all times, as things can go bad at any time. This puts the victim in survival mode, meaning a lack of long-term plans, as their existence becomes about making it through the day relatively unscathed. And even if there is no abuse, they still live in perpetual fear of it.

Example 3 - A smile can be deceiving

Gerald's emotions are very hard to read. He can be smiling at Sarah with such seeming genuinity, lull her in a false sense of security, and then maliciously attack her when her guard is down. Sarah thus can no longer trust Gerald's smile. Is he pleased, or is he raging inside? She doesn't know, but now Gerald's smile makes Sarah highly anxious, even when Gerald is genuinely pleased. When Gerald is home, she has to be alert for danger at all times-regardless of whether Gerald is smiling or not.

Fundamental unhappiness

Most abusers are themselves fundamentally unhappy, and yet they may make it seem as if their victimized partner is the fundamental cause of their unhappiness. This is exactly why there really is no way pleasing them, because if absolute control is what they are after, then any deviation from that will be met with negative emotions. This is no way to live, but perhaps especially no way to live with/around.

Example 4 - Feeling responsible

When Anne was little her mother, Kathlin, was very insecure about her father sexually abusing Anne. Kathlin saw the sexual abuse as a direct threat to her relationship, and so she would make statements like, "If only you were never born" and "If you were to die my life would be perfect" to Anne.

Anne grew up with a false sense of being responsible for her mother's unhappiness. This developmental abuse put her at risk for abusive relationships which in fact she repeatedly got involved with. Anne was so desperate for approval and being liked that she failed to recognize the signs of abuse, and even when they happened, she believed it was her fault.

As long as everything is in accordance with the abuser's desire, there may be no abuse. As such, the victim tends to go a long way in pleasing their partner so as to avoid being abused. Of course, that is the preferable situation.

But in pleasing their partner to maintain that preferable situation, the victim is being constrained. Not only that, but she is being cultivated to please her insatiable partner. When you are cultivated in such a manner, you give up who you are, what you think, how you feel, and what you need. To perpetually please and appease an abuser means to dissolve your identity.

Example 5 - Required & forbidden things

Steve is married to Amanda, who is excessively controlling. Amanda believes in a strong work ethic, and thus wakes up at 9-10 in the morning to work from home well into the night. She demands from Steve that he wakes up at 7 am, and continues work until 7 pm. Amanda-on account of working long hours-sometimes takes naps during the day. Steve, however, is not allowed to take naps. Steve is not allowed to drink coffee, and he is not allowed to enter Amanda's office, because in her mind he does not show enough appreciation for her work. Steve always has to be in a good mood, and is not allowed to watch his permitted one hour TV until he finishes all her chores after work. If anything doesn't go the way Amanda wants, Steve has to endure excessive yelling and agitation for days on end, so he makes sure to abide by all her rules.

The victim does anything to please the abuser so they can prevent the anxiety that comes with displeasing the abuser. Once your identity dissolves, you become malleable, and no longer live for yourself; instead, you live for the other in an attempt to survive.

Destroying potential

Whether we feel justified in considering a relationship to be abusive or not, what is ultimately most important is whether the relationships bring out the best in both or all parties involved.

In healthy relationships, the people involved create enough space for each other's identity to flower. To constrain the other is to stagnate their growth, or even to regress the other person's identity and potential.

When your potential is being limited rather than cultivated by your partner, it is indicative of an unhealthy relationship, and potentially an abusive one.

For autistic people, a more significant cognitive effort has to be made to interpret social signals (i.e. nonverbal communication) correctly, and deduce intent. We also show impaired recognition of socially relevant information from faces.

It can already be a challenge for a neurotypical to know whether their partner is lying, but this may be particularly true of autistic people, in part due to our theory of mind. But we also show a dislike and lack of understanding of deception, to the point that there are therapies to teach autistic children to lie, because it can be socially helpful and appropriate to lie at least a little bit.

Due to our lower theory of mind, we tend to project our own intentions and moral framework onto others, which is to say we tend to think their intentions are probably similar to ours. We have your best interest at heart, so wouldn't you have ours? Obviously, not everyone does.

General lies

When it comes to identifying lies, look for inconsistencies; inconsistencies between statements that were made earlier and later (like Sarah noticing Gerald's inconsistent statement about the bed), or inconsistencies between statements made and behavior observed.

Pathological lying

When it comes to pathological lying, pay attention to the things your partner says to others. They may lie about insignificant things that may not even register initially. But do note that if they are lying to others, there is a good chance they are lying to you as well.

Playing it fast

Abusers play it fast. Like Shulamit Widawsky described in Some Advice on How an Autistic Teen Can Recognize Abusive Behavior Before it Becomes a Serious Problem, teenage bullies* may befriend you to lull you in a false sense of security, but they are impatient and act too fast. A person who befriends you suspiciously fast is either socially immature or a bully setting you up for abuse.

Note also that autistic people are very vulnerable to bullying; a study from 2014 that reviewed the literature on autism and bullying found that the prevalence of victimization due to bullying was an astounding 94%, compared to 30% in the general public.

It is interesting to note that this behavior can still be observed in adult abusers; those who abuse with intent tend to-just like the teenage bullies-lack patience, look for easy prey, and fast-track the relationship. An early marriage proposal is likely a red flag.

Love bombing is another sure sign-this is where you can (seemingly) do no wrong, and your partner loves everything about you and what you do. But love bombing is either conscious deception, or a state of mind characterized by extensive adoration which cannot be sustained. After the period of love bombing comes devaluation. For more information have a look at idealization & devaluation.

False sense of security

I spoke before about the power of creating a false sense of security, but not only is this a tactic used within a relationship, but it is often used to initiate a relationship as well.

For example, mimicry is often used, because subtle imitation can put the other person at ease, thus making them more likely to trust. In fact, a study from 2008 indicates the following:

Mimicry enhances familiarity of the mimicker that in return leads the person mimicked to evaluate the mimicker more favorably, to help him/her more favorably, and to enhance the compliance rate to his/her request.

Social mimicry can be used to deceive, but is also used non-maliciously to attract partners, and subconsciously as part of motor mimicry, as I talked about in the following post:

Sometimes it can be challenging to differentiate between a potential relationship that is-or will be-good, and a relationship that is too good to be true, but there are a few things to watch out for:

Note how fast the relationship developed, and how much the other is pushing you to take further steps to commit. Perhaps say "No" sometimes and see if that sense of security disappears.

Watch out for mimicry. There are people you will have a lot in common with, but there will still be differences-different preferences, different beliefs, different convictions, etc. If the other person agrees with everything you say, and like and dislike everything that you like and dislike, and mimic you in every way, you are either dealing with a socially immature person, or someone who employs mimicry because they want something from you, rather than just to be with you. Someone who is genuinely interested will explore ideas with you, and so sometimes disagreement is exactly what makes a discussion interesting. If everything seems too good to be true, it probably is.

If the relationship shifts from suspiciously great to plain bad, that would be an indication that it all was too good to be true indeed. It may be wiser to distance yourself from the other rather than

When a relationship seems too good to be true but you convince yourself that it is both good and true because it serves your emotional needs, you are allowing yourself to be deluded. This is self-deception, which will only work in your abuser's favor.

Autistics are delicious

Abusers often seem to gravitate towards empathetic, forgiving, non-judgmental people, which makes autistic people likely targets. Our kindness and social blind spots can be taken advantage of, and in fact, autistic youth are particularly vulnerable to victimization. So watch for patterns of behavior, inconsistencies, and love bombing, and get out of the relationship as soon as you can if it becomes insidious and toxic.

Revictimization

Note also that the repercussions of abuse can be both severe and long-lasting. Childhood trauma alone can set a person up for years of required therapy (as well as the financial costs involved in the healing process), acting out their childhood traumas in their relationships (and the consequences involved for both/all parties), and since abuse has been normalized at home, a person who endured trauma is more likely to enter another abusive relationship, and become revictimized. A meta-analysis from 2017 which looked at 80 studies encompassing 12,252 survivors of child sexual abuse even revealed that 47.9% (almost half!) of those who have been sexually abused as a child are sexually victimized in the future.

The high rate of revictimization is not due to the victims' vulnerabilities alone; abusers may look at patterns of behavior as well, and actively search for people who have been previously abused. Autistic individuals may be disproportionately at risk of experiencing sexual abuse and victimization.

As such, a previously abused autistic person may be particularly at risk.

I hope this post offers some help. Be safe.

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Unhealthy relationships | Embrace Autism

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This post was originally written for autistic people, but is probably relevant to a larger audience Autistic people are at risk of entering into unhealthy/abusive relationships because of their difficulty judging the intentions and character of others (theory of mind ), and not being able to compute the contrasting presentation of someone who is being nice and kind one moment, and then controlling or mean the next.* To put it bluntly, we can be pretty naive, and have a tendency to explain red flags away, or fail to properly contextualize social information in the first place.

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This article was originally published on The Establishment under the title "We Need To Talk About the Domestic Abuse of Autistic Adults" and is republished with permission.
Content Warning: This article references sexual abuse.
It didn't take long for me to identify a sweeping problem that no one is talking about.

fter much confusion, anguish, flashbacks, self-blame, and subsequent therapy regarding a traumatic period in my life, it finally occurred to me that autistic adults like myself might be at heightened risk for domestic abuse within romantic relationships.

After all, there has been abundant research indicating a strikingly high prevalence among autistic people when it comes to being mistreated even by those we believe to be friends. We're also much more liable to be bullied in school and abused as children.

Such betrayals may be associated with the typically good and trusting nature of autistic people,  but they're primarily caused by society's complex ableist structures and attitudes. There is no obvious reason to think these forces wouldn't make autistic adults more at risk for domestic abuse as well.

Yet strikingly, when I began researching the matter, I could find almost nothing addressing the topic.

In the scientific literature, a clear correlation has been found between being autistic and an increased risk for experiencing sexual violence during adulthood. A recent small-scale study detailing the general experiences of autistic women found that 9 of 14 had been sexually abused, many of them by their partners. But I found no systematic studies of the prevalence and causes of domestic abuse within romantic relationships. It was almost as if this paradigm simply hadn't occurred to researchers as something to look into.

In media, we find countless discussions among neurotypicals regarding the possibility of domestic abuse perpetrated by autistic adults, but almost nothing on the possibility of it being the other way around. Blame is often automatically laid at the feet of the autistic person, rather than acknowledging that empathy and communication problems between members of different neurotypes are always relational and two-way. Notably, these discussions are also often remarkably ableist, as in this article, where autistic people are characterized as "excessive burdens."

Given this combination of ableism and lack of research, I decided to dig further into the issue. I began by joining and then posting a rather tentative ad on a closed Facebook group for autistic adults in order to ask if anyone had any relevant stories to share for an article. I didn't think I'd get many, or even any, replies due to the traumatic and private nature of the question.

I was wrong. The very next day, I found my inbox flooded with message requests from autistic people who had been continually subjected to domestic abuse, and who felt their abuse hadn't been taken seriously. The response was so overwhelming that, over the following days, I was compelled to continue digging deeper - speaking, in the end, to dozens of survivors, as well as to experts and clinicians.

The personal stories were harrowing. One autistic woman told me of being punched in the stomach by her abuser when she was eight months pregnant, while neurotypical people looked on without saying anything. An autistic man told me about how a narcissist moved into his house and convinced him to look after her young children while she stole his disability allowance. She racked up thousands of pounds worth of bills and then suddenly left him -  penniless.

Some folks, especially women but some men too, feared for their lives due to threats and acts of violence. Many reported developing the symptoms of post-traumatic stress  - including flashbacks, anxiety, and suicidal ideation - after ending their relationship.

Listening to the stories of autistic abuse survivors, it was not hard to begin spotting recurring patterns, with three things (beyond physical and sexual violence, which were slightly less common) striking me as particularly prominent.

1. Taking advantage of an autistic partner's trust to control them

I heard of many abusers using the typically unassuming and trusting nature of autistic individuals to gain control over them and to then, slowly and subtly, use this control for the abuser's own ends.

The survivors I spoke to said their abusers were of course also attracted to them for more legitimate reasons - having a strong commitment to honesty and social justice, being highly rational and talented in a variety of ways - but noted that they often felt targeted for being trusting.

As one autistic woman Rebecca* put it, "Being autistic, we find it difficult to read between the lines," which attracts those who "can sense a more vulnerable person almost like a bird of prey catching its next meal."

Another person I spoke with, Gary, seconded this, noting that when it comes to identifying vulnerabilities, those with a need to control and dominate others "can always sniff it out." A survivor named George hypothesized that "a lot of on-the-spectrum people will take others at their word" before being made to "wonder if they are the crazy one for feeling unloved" when actions and words don't line up.

And Sarah stressed how the fact that "we want to see the best in everyone, especially those we care about," might be a factor in both being seduced into, and then staying in, abusive relationships.

" Gaslighting " refers to a subtle yet pervasive and deeply traumatic form of psychological manipulation used to make the victim systematically doubt their own lived reality, often including the validity of their feelings in relation to the abuse itself.

In this regard, I was contacted with many reports of victims being repeatedly told they were, as one man put it, "just too sensitive." They also talked about having their suffering systematically dismissed or ridiculed, to the point where they began to distrust their own perceptions. "The brainwashing convinced me it was all my fault," said Ruth. "I still question myself about that now after all these years."

Another survivor, David, mused that "we might be more easily gaslighted, because some of us can be very emotionally sensitive, so it can lead us to wonder if [we're] overreacting."

Luke emphasized how "the person I was involved with certainly made me feel that he was the victim." In this sense, the burden of blame - especially when the abuser manifested narcissistic tendencies  - came to weigh down the victim rather than the abuser, leading to an ever-increasing spiral of confusion and despair.

3. Autistic survivors of abuse not being taken seriously

Perhaps most worrying of all was the third theme that emerged: abuse that was being reported went unnoticed, overlooked, or not taken seriously , even in one case where it was reported to the police.

Many of my respondents thought this was partly due to the relatively superior ability of the non-autistic abuser to subtly control the wider public perception of the relationship, with abusers often using their superior social fluency to make the abuse seem trivial or nonexistent.

As Vicky, who was both emotionally and physically abused, explained, "Everybody on the outside of the relationship thought he was charming and would never do anything wrong."

Other abusers convinced friends and family that the autistic partner was the controlling one in order to either hide or justify the abuse, sometimes by playing on misleading stereotypes regarding autism - a theme I'll return to.

At this point, I should stress that my findings are without the scope or methodological precision of a large-scale scientific study. Notably too, my own experience of unnoticed emotional abuse (followed by the emergence of what I have now been told is a fairly textbook case of Narcissist Victim Syndrome coupled with post traumatic stress) may have influenced my interpretation of the patterns.

Nonetheless, what I found echoes what world-renowned clinician Dr. Tony Atwood - who has over 40 years of experience working with autistic people - later told me.

"I do think that people with autism are susceptible and vulnerable to domestic abuse in a relationship," said Atwood. " We have yet to determine precisely why, but those with autism seem to be a magnet which attracts predators, not only from bullying and teasing at school, but also relationship predators.

"There can be a tendency for such events to be occurring behind closed doors and great difficulty and courage needed to disclose what is happening," Atwood continued. "One of the inhibitors of disclosure can be self-blame and thinking something is wrong with yourself rather than realizing that you have been a victim of abuse."

Given how many people I easily found who were so eager to share their experiences, and the various common themes that emerged, the domestic abuse of autistic people began to seem to me like something terrible, systematic, pervasive, and yet - shockingly -  ignored. As soon as I thought to look, I found it everywhere, and yet nobody was really noticing it, let alone talking about it.

And so I came to ask why autistic people might be particularly susceptible, why such abuse has been overlooked, and what we can do about it.

The role of structural oppression in facilitating ableist abuse

Many of my respondents pointed to wider social factors in regards to how autistic people are treated as contributing factors in their experiences of abuse.

In the words of Karl, "[D]ue to years of conditioning I automatically think a problem is my fault and try to fix it, to be less of a burden or inconvenience to those around me. [This is] something that maybe other autistics can relate to since we've been conditioned to believe we're burdens." In other words: Society already systematically gaslights autistic people, so we can internalize this oppression and become more susceptible to the same tactic from manipulative individuals.

Others suggested they simply hadn't been taught to identify abuse. One woman, for example, had been emotionally abused and raped by her husband for 20 years before finding out during a work presentation that consent must be given for sex to not count as rape.

This resonates with some researchers' suggestions that the heightened susceptibility of sexual abuse among the autistic population may partly come down to insufficient relevant education being offered to autistic persons. It stands to reason that it may be the same when it comes to all forms of domestic abuse as well.

The reasons behind this phenomenon are, then, both complex and deeply intertwined with wider social structures that lead to the disablement of autistic populations. But this doesn't answer the other question at hand: Why has this dangerous dynamic gone largely unnoticed among both the public and researchers?

"I am not sure why no one has looked at this area," said Dr. Atwood, "but I do encourage further investigation and hope that one day someone will conduct research into this area."

For my own part, I initially suspected the reason might be that it just never occurred to researchers or the general public that autistic people often can and like to have romantic relationships. After all, despite the fact that there is little difference between autistic and non-autistic adults in regards to physical desire and/or companionship, until fairly recently it was widely (totally wrongly) assumed that autistic people were cold, emotionless, and uninterested in love or sex.

Beyond this, survivors I interviewed offered further relevant factors as explanations for why the abuse they suffered wasn't taken seriously. Worryingly, some thought that their abuse was not taken seriously because they were male. As Wayne put it to me, "[A]s a male-presenting person, nobody either cares or believes you if you've been abused like that."

Part of this deeply gendered issue undeniably revolves around the prevalence of men occupying the abuser role. In other words, the lack of research may be predicated on the belief that male victims are too much of an anomaly to be studied, although autism is currently diagnosed in roughly five men for every woman.

In addition, my respondents hypothesized that due to ever-present and deeply misleading media representations coupling autism with violence - including what one victim called "the autistic rage stereotype" - it's often assumed that the autistic partner is more likely to be the problematic one in a relationship. (Some survivors thought such stereotypes helped their abuser make themselves out to be the victim.) All this despite the fact that the media-generated association with violence is vastly exaggerated, and the further fact that autistic persons are more likely to be victims of violent crime rather than its perpetrators.

Finally, others stressed that some symptoms of abuse were mistaken for (what are often assumed to be) characteristics of autism - anxiety and withdrawal, for example - rather than stemming from traumatic external factors. Notably, this conflation is in line with how symptoms of sexual abuse among autistic children have often been mistaken for baseline characteristics of autism. It should come as no surprise that this dynamic might be occurring in cases of domestic abuse as well.

So what are we to do about all this?

Some of the survivors I spoke to offered advice to other autistic people, notably highlighting the need to trust actions over words.
"Believe nothing said, and everything done," said Eric, while Jonathan emphasized, "If you tell them something makes you feel uncomfortable and they don't change their behavior, something is wrong."
Others stressed the need for people with autistic friends or family members to regularly check whether there might be a possibility of abuse, even if the relationship seems very happy from the outside. In the words of Mary, "Be aware of the signs of manipulation and abuse. Always listen and speak up and tell the person that what they're experiencing isn't normal or healthy."

Since autistic people's experiences of abuse aren't just individual, but societal, the change can't stop there. I suggest these three initial steps toward dealing with the issue of domestic abuse against autistic folks on a systemic level.

1. As individuals and as a society, we need to begin learning to listen to autistic people more attentively, and to empathize with autistic suffering.

As another interviewee, Sammy, noted, we often forget that autistic people "all have the same feelings as the next person."

2. Those in positions of power need to fund and carry out research designed to identify and prevent such abuse.

We need hard data to expand our understanding of the concerns explored in this article. And we need to examine them as social rather than individual medical issues if we're going to get to the wider causes of the problem and avoid victim-blaming.

3. We need to imbue entities - including the police and social services - with the power to implement policy and training based on the findings of this research.

In-depth investigation must be paired with tangible policies and action that center the needs of autistic people.

Above all, what we cannot do is go on pretending that domestic abuse of autistic people doesn't happen. The issue is widespread, systemic, and, for anyone who cares to look , clear to see.
*All the names of abuse survivors have been changed. Robert Chapman is a neurodiversity advocate and philosophy research fellow at the University of Bristol. [Feature Image: An older person is photographed as they hold their hands over their face in a seemingly protective stance. They have chipped red nail polish on the fingers of one hand. Source: The Advocacy Project for Flickr]

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3 Ways Autistic Adults Experience Domestic Abuse -- And 3 Ways To Stop It

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This article was originally published on The Establishment under the title "We Need To Talk About the Domestic Abuse of Autistic Adults" and is republished with permission. Content Warning: This article references sexual abuse. It didn't take long for me to identify a sweeping problem that no one is talking about.

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moving case studies in dementia and the lives it touches

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moving case studies in dementia and the lives it touches

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radio 4
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Travellers to Unimaginable Lands: Dementia, Carers and the Hidden Workings of the Mind by Dasha Kiper - Episode 3 - BBC Sounds

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Catch up on your favourite BBC radio show from your favourite DJ right here, whenever you like. Listen without limits with BBC Sounds.

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artist in residence in care home, some residents with dementia
accessed 8/3/23

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This exhibition encompasses the works of five visual artists who have spent two years working with residents of care homes across Wales as part of Age Cymru's cARTrefu programme. Each artist created a nurturing environment where residents felt relaxed and encouraged to share fond memories and forgotten stories.

Through responding to this unique interaction, the artists were able to connect with the older people, some of whom live with dementia. As a direct result of this connection the artists were inspired to develop their practice and create work which expressed the sensitivity and fragility of these shared experiences, capturing and amplifying the past glories of the people they met.

The spectrum of works in the exhibition is very broad, yet there is a common thread - to showcase the experiences of the older people - creating a wider audience and challenging society's assumption of older age.

Exhibiting artists: Emma Prentice / Michal Iwanowski / Prue Thimbleby / Ticky Lowe / Claire Cawte

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This exhibition encompasses the works of five visual artists who have spent two years working with residents of care homes across Wales as part of Age Cymru's cARTrefu programme. Each artist created a nurturing environment where residents felt relaxed and encouraged to share fond memories and forgotten stories.

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Imagine the immense pain and discomfort of breaking your collarbone only to be told by your partner-the person you may have once loved and trusted-that you're forbidden from going to the hospital. That's what one survivor shared with DomesticShelters.org on our Survivors Community Page. It's just another way an abuser will wield power and control over a victim.

"I couldn't sleep for two weeks," the survivor told us.

She might actually be considered lucky if that was the only fallout. Left untreated, fractures can heal improperly, causing deformities, limited movement, momentous pain and possible life-threatening infections.

Preventing a survivor from seeking medical care is a form of physical and psychological abuse, as well as an aspect of gaslighting-the tactic by which abusers will convince survivors that their memory or perception of events can't be trusted. An abuser might say a concerning symptom or illness is "all in your head." They may convince them physical abuse that resulted in injury never happened- I didn't grab you. Your arm must be hurting because of something you did.

And, of course, an abuser likely also wants to prevent a survivor from disclosing abuse, which is why if a survivor does receive any type of medical care-from a routine visit to a hospital stay-they're often accompanied by an abuser who never leaves their side. Think a survivor can disclose it secretly when taken away for a test or X-ray? An abuser may have already threatened additional violence when they return home if the survivor gives any indication of being abused.

This can all add up to a survivor feeling confused, alone, scared and shamed into not seeking medical care at all.
Nine Months Without Prenatal Care
Denetra McBride is the program director at New Horizons Domestic Violence Services, a Connecticut nonprofit that's been providing, among other things, an emergency shelter and domestic violence hotline for the past four decades. She recalls a survivor who stayed at their shelter with her young child. She had escaped an abuser who refused to let her seek prenatal care for the entire nine months of her pregnancy.

"She talked about being kept in the house, restricted to just one room," says McBride.

Luckily, her child was born healthy but this isn't always the case. Domestic violence during pregnancy has been shown to double a mother's risk of preterm birth -before 38 weeks-as well as an increased risk in low birth weight, resulting in the baby having more difficulty fighting off infection.

McBride notes that this particular survivor was also an immigrant, part of a population even more at risk for this type of control since abusers know they can use it as a deportation scare tactic. If the survivor was undocumented, the abuser may convince her medical personnel may report her. (Healthcare providers should protect private patient information under HIPPA laws and are not legally obligated to inquire into or report to a patient's immigration status to authorities... though, unfortunately, some do.)
Holding Insurance Cards, Prescriptions Hostage
McBride recalls other cases of withholding medical care from survivors, like one who told shelter advocates her abusive husband first made her quit her job, then withheld his employer-provided insurance from her and their children.

"He wouldn't let her have the insurance cards and told her she didn't need to go to the doctor. Instead he would say, let's just use some over-the-counter medication."

This may be all well and good for a slight fever, but without annual exams, necessary vaccinations and access to emergency care, children can face a higher risk of disease, a missed diagnosis or early intervention for developmental delays.

"My ex-husband used to steal my medication from me little bits at a time ... so I was always running out early, and made me and everyone else think I was taking too much and was a crazy pill addict," one survivor told DomesticShelters.org.

"My [abusive partner] smashed my birth control pills into a million pieces midcycle because he wanted me to get pregnant so he would have more control," another wrote.

The National Coalition Against Domestic Violence found that a quarter of all women being abused by their partners also report being pressured or forced to become pregnant. Reproductive coercion is yet another way abusers can keep their victims trapped indefinitely.
Find Support, and Soon
As a grown adult, you have the right to seek medical care when needed. You don't need the permission of a spouse or partner to do so. And if you feel like you do, or you're scared to reach out, something is wrong.

"It's part of isolation," says McBride, and emphasizes, "Safety planning is definitely number one." Reach out to a trained domestic violence advocate near you or, says McBride, if you feel more comfortable, reach out to a friend or family member. Tell them what's going on. Tell them it may escalate (unfortunately, it usually will). "Ask them to check in if they don't hear from you for a couple of days."

To better understand the isolation aspect of abuse, read " From Romance to Isolation: Understanding Grooming. "

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Why Abusers May Withhold Medical Care and Medication

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Imagine the immense pain and discomfort of breaking your collarbone only to be told by your partner-the person you may have once loved and trusted-that you're forbidden from going to the hospital. That's what one survivor shared with DomesticShelters.org on our Survivors Community Page.

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The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder

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The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder

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Please say something about how you got involved with The Trebus project and how this work relates to your earlier life as a sculptor.
The Trebus Project grew directly out of the work I was already doing as a sculptor. The Trebus Project is just a name I gave to the work I do as an artist. Sometimes it involves commissioning or collaborating with other artists, musicians and filmmakers, but mostly it's just me. I never felt that I had changed focus at all. Twenty-five years ago I was making conventional abstract steel and wood sculptures. Five years later, I was more interested in the space around the sculptures and the studio as a social space, by which I mean I spent most of my time talking and drinking. I started to make installations with ready made domestic objects, which led eventually to making a few installations with dust, ash and sound, which in turn led to pure sound installations. I was never a hammer and chisel, stone-carver type sculptor. I was interested in finding out what sculpture could and could not be. I was particularly interested in object making where it pushed against the edges of music, performance, creative writing and film. Looking back, I have now realized that somewhere along the line I became more interested in traces left by objects than the objects themselves. The ash came from a large number of wooden sculptures, which I worked on for a year, and then burnt. I found the ash infinitely more interesting than the original sculptures.

I was (and am) interested in artists such as John Cage, Bruce Nauman, Carl Andre, Le Monte Young, Alvin Lucier, Stan Brakage and Michael Snow, and other artists whose work seemed at times more like scientific research. I was obsessed, with Samuel Beckett and to a lesser extent the structural, cut up experiments of William S. Burroughs, B. S. Johnson and others. I was always very interested in words as objects, whether they were objects because they were recorded or printed or because they were conceptually defined units of information. What linked all these artists was an enquiry into time and their use of repetition.

It was pure chance that led me towards working with people with dementia. I'd become rather bored with the cockiness and transparent marketing of the Brit art scene and I wanted to get as far away from it as possible, so I took a part time job as an activity coordinator in a day centre for older people with dementia. The day centre was round the corner from my house. Five minutes into the first day, I realized that most of the service users had absolutely no interest in the boring timetabled activities. It seemed ridiculous that a guy who had designed part of a Spitfire Engine was being asked to waste his time making pasta collages.

Most of the people who used the day centre came along for a chat or because their families needed a break. I started to write down what they said as a backup for my own memory. I realized that people often recognized their own words when I read them back the following week and that the small scale, unimportant stuff told me far more than the medical notes.

One day one of frailest residents called me over as I was heading off to lunch. Stumbling over her words she told me that she needed to speak to her mother. She told me a few fragments of half remembered, jumbled information and, not having a piece of paper, I wrote her words on my hand and up my arm so I'd remember to come back later. After lunch one of the nurses told me that the woman died in her sleep soon after I left. Ten minutes later I realised that her last words were written on my hand.

Knowing that some of the stories would be lost as soon as they were told made it seem critical to write down absolutely everything. Within two or three weeks I was wring down every comment; important things like family names, friends and jobs, but also small throw away stuff, like the reason behind Molly's fear of trees (her father told her that the devil lived in the branches in order to stop her climbing for birds eggs when she was five). I also really liked some of the haiku like philosophical questions and half jokes. I remember one chap saying that he'd forgotten exactly when he became old, another said that dementia was like "forever falling down stairs".

There was no big idea to start transcribing the conversations; it started as a way to produce something without imposing too much of myself. After a year or so, my flat was filled with thousands of scraps of paper, sometimes taped together in long scrolls. I think most of my friends looked on my rubbish gathering with a certain level of pity.

I put the stories together very slowly over months or even years, during which I might visit the person fifty times or more. Once I had a block of stories I began to see patterns. For example, there is a strange tendency for people to create architectural metaphors to explain their memory loss. They might say a thought is under the floor or behind the wall, suggesting that it is physically present but inaccessible. People often describe events that happened years before as recent but removed in terms of distance, "Mum, lives a hundred miles away now". Many of the stories are peppered with references to moving up or down, usually up, so the past is usually described as "down". Many of the storytellers have told me that their room is above or even on top of (in the sense of superimposed) on the family home from their childhood. As a sculptor, I find the notion of symbolic space endlessly fascinating.

When I read one of the scrolls to a group of people in a theatre or a gallery I still see the work as sculptural, though I am probably in a minority of one.

--The transcripts of interviews with Alzheimer's patients are long, convoluted. What is your process of editing them down into something you can publish, put on the radio? Can you walk us through one of the shorter pieces and tell us what choices you made?

Undoubtedly five years studying sculpture influenced the way I go about editing and thinking about the stories. I move the words around physically, usually printing them out on scrolls so I can see all the words together at once. Even when I am talking with the interviewee I tend to visualize their story like a scroll or a rolodex. I'm constantly thinking about how new content changes the overall shape, where things slot in, and where they distort, or push something else out. I see the stories (and not just the printed words) as physical objects, with a particular form and three-dimensional sculptural shape; a single unit made up of many smaller information units.

I read and reread each of the texts hundreds, perhaps thousands, of times in order to immerse myself in the language, and then I look for echoes and patterns. I'm interested in showing the pattern and shape of the language just as much as I am in showing the narrative content of a story. I was quite chuffed when I found out that Beckett referred to his later plays as objects.

Sometimes something beyond the surface narrative begins to poke through. This might be a sense of loss, a spark of humour, an unmet ambition or an attempt to make sense of their dementia. Then I carefully trim around it, though this always means I'm following one path when several others would be equally viable.

I deliberately leave dead ends and a certain level of circumlocution. I think it's important to see that these are people trying, sometimes working very hard, and sometime failing, to make sense of their memories and experiences. It's right that it can be difficult for the reader though I try to ensure that they are readable. I often produce five or six versions of a text in order to highlight different ideas. I don't think there is a right answer or a correct finished version. Each text is more or less a moment where it feels right. I should say that I work and rework texts for months or even years.

I'm not keen on endings and punch lines or clipping the words to fit a familiar story form. It's important that they are left as they are, complicated, uncertain, despairing, comic. Many of the stories subvert the idea of time (and history) as linear, unidirectional progress so endings don't make any sense. Recently I experimented with running some of the stories backwards so they start with the final paragraph. Over several years of interviews those paragraphs are usually the ones that are more disjointed or contain the most repetition. It's interesting for a reader to start with the last words (sometimes literally the last words of the person) and work their way through the story, backwards in time, to see gradually where those final repeated words came from.

The radio series was both liberating and a huge challenge for me personally. Having known the interviewees for years it was very difficult to give creative control to someone else. The producers themselves (who both have relatives with dementia) made the final choice of stories from my shortlist. They then re-edited the material from my texts to fit the very limited time available. The time constraints meant some very important themes were omitted from in individual stories and, to make them easier on the listener, some of the dramatic awkwardness was smoothed off. The press seemed somewhat obsessed with whether the stories were historically 'true'; in fact some reviewers seemed to think that this is what the series was about.

Some of the texts are typeset to convey the long, testing silences between thoughts. I had to learn to leave up to a minute or two between my questions and the person with dementia's answers. I think this was a key piece of learning for me, and it also has a huge dramatic potential, but with each monologue having to come in at six or seven minutes leaving a 20 second silence between some lines just wasn't possible.

Homogenising the stories of people with dementia is a big issue for me. Some care homes use very narrow life story templates and lists of set questions, which funnel each person's uniqueness into the same easy to manage shape, a general PWD.

I had an interesting and surprising experience a few years ago when a group of carers and a care home manager sat in on a session with a small group of people with dementia. The manager and staff had cared for the group of residents for several years. After the session the manager said how interesting it was and how impressed she'd been at the simplicity of the interviews and their informality and I was invited back. The next week I came back and read the edited interviews with the same group. The residents could all identify their words and added more information. Afterwards the manager asked me where I'd found out so much about the residents, she was clearly quite suspicious. None of the staff had a clue yet they'd all listened to the residents say the exact same words only the week before. Not one member of staff could identify the person from their words despite the fact that they'd known most of them for several years.

Not only are we censoring with templates and set questions but I think the care institutions often create a culture of psychological censorship where staff, possibly as a way of safeguarding themselves from difficult material and emotional connectedness, create barriers to listening. A couple of weeks later the manager called in her regional director and I was asked to leave the home. The regional director of the company managing the home said the stories had "no useful content" and were about "gathering gossip". The home manager was sacked from her position for letting me in, two minimum wage activity staff were sacked, and as a punishment the homes activity budget was cut to 3p per person per day! The director asked why I hadn't chosen to work in one of their newer homes where the residents paid for their own care privately rather than working with a economically poorer group who were funded by the local council. She described the council funded less affluent group as "Not very nice people". This is the kind of comment that keeps me going; I don't see myself as an activist, but I guess simply by listening without judgment I facilitate the activism of the person with dementia themselves.

Why we did the radio series and other stage readings is very simple. I began to use the stories as source material in staff training, where I'd get new care staff to interpret the texts. This proved very successful. Although the books were being used academically, it took 3 years to sell 250 copies and I get very little funding other than training staff and book sales. There was no chance at all of bringing any of the issues in the books to a wider public. In the media in the UK dementia narratives have become commonplace however they all tend to lack a genuine subjective voice. We see scare stories about a global epidemic and tragedies of disappearing people but that's not what I see at all in the care homes. I wanted to put the reality out there, even though I knew some of the material would be compromised. On balance it seemed worth doing.
What's next?
I'm currently working on a third and forth book. The third will be a straightforward 'best of' with some unpublished material. The fourth book focuses on four people who lived in the same room in a care home one after the other without meeting. Although they never met, their stories developed strange parallels and even some similar lines of content. For example, each person felt that their mothers had recently abandoned them. I'm also working on a series of short film adaptations of the stories and I'm still visiting people and recording new stories. It's going to be a busy year.
Editor's Note
You can find out more about David Tregg and the Trebus project at their website:

http://trebusprojects.org/

Or by reading this blog post:

http://inthespaceofreasons.blogspot.com/2012/03/david-clegg-and-trebus-project.html

____________________________________

David Clegg received his M.A. in sculpture from Chelsea School of Art in the UK. He maintains parallel careers in the arts and dementia care. He is the founder and director of The Trebus Project and the author of Ancient Mysteries and Tell Mrs Mill her husband is still dead.

Susan M. Schultz has lived in Hawai`i since 1990. Her book, Dementia Blog (Singing Horse, 2008), chronicles her mother's decline into Alzheimer's over a six month period in 2006-2007. She completed the dementia project on Tinfish Editor's Blog, ending it with her mother's death in June, 2011. Her other books include the recent Memory Cards: 2010-2011 Series, also from Singing Horse, and A Poetics of Impasse in Modern and Contemporary American Poetry (University of Alabama Press, 2005). She has edited Tinfish Press since 1995.

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Interview with David Clegg of the Trebus Project

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Please say something about how you got involved with The Trebus project and how this work relates to your earlier life as a sculptor. The Trebus Project grew directly out of the work I was already doing as a sculptor. The Trebus Project is just a name I gave to the work I do as an artist.

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'Established by David Clegg in 2001 the Trebus Project has worked with over a thousand people with dementia in care homes and the community. It is now the largest archive of free to access interviews with https://soundcloud.com/david-clegg with dementia in the world'
accessed 8/3/23

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David Clegg

London

Established by David Clegg in 2001 the Trebus Project has worked with over a thousand people with dementia in care homes and the community. It is now the largest archive of free to access interviews with people with dementia in the world. Clegg was awarded a British Empire medal in 2019 for his work with people with dementia. "Patients with dementia, though, they are thought to be different: they - so it's generally supposed - don't have anything worthwhile to say about own situation; in fact they don't have anything worthwhile to say at all. David Clegg's book shows otherwise, revealing that if patients are listened to, are spent time with, there is underneath all the jumble and repetition and forgetfulness, a story being told by someone ... sometimes desperately ... trying to connect. Alan Bennett "The Trebus Project throws down a gauntlet to the world of contemporary art, so often obsessed with youth, sensationalism and celebrity." Harry Eyres - Financial Times. "Imagine an audio social history of the 20th century, told in scattershot sentences, explosions of rage, elation and sorrow, and the odd bombshell of heart wrenching howling emotion." Jane Anderson - Radio Times. "These remarkable monologues contain not only scattered reminiscences, howling rage and sudden shafts of joy, but grains of gold reminding us that the old were once young, in love and excited by life, and still have insightful things to say." Radio Times. "Stories that are sometimes funny, sometimes moving, sometimes like a Samuel Beckett play in their bleakness." Kate Murray - The Social Issue. "David Clegg and his team of editors have given a voice to a group of people who are not only marginalised, but are also on the whole perceived to have nothing left to say or contribute in any valuable way. These stories show that everyone has a story to tell, even if it can be sometimes fragmented or difficult to interpret. All people need is for someone to truly listen." Alex Walker - Associate Director NHS Central Lancashire It is an honour to be involved in this project - to give voice to an anonymous soul. The words held so much of the essence of her. A kind of magic that you should have taken the time to capture her words. It's all in us - and it is a kind of poetry - the poetry of being us. Listening creates compassion... which is what we need now more than ever. Fiona Shaw CBE

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Established by David Clegg in 2001 the Trebus Project has worked with over a thousand people with dementia in care homes and the community. It is now the largest archive of free to access interviews with people with dementia in the world. Clegg was awarded a British Empire medal in 2019 for his work with people with dementia.