mental health

The women who are autistic but don’t know it

If getting a diagnosis of autism is already tricky for men, it is even more difficult for women.

Let us call her Sophie. The description we will give could be that of any woman who is on the autistic spectrum without knowing it. Because they are intelligent and used to compensating for communication impediments they may not be consciously aware of, these women slip through the cracks of our still-too-inefficient diagnostic procedures.

Studies reveal one woman for every nine men is diagnosed with so-called “high-functioning” autism, that is, autism without intellectual disability. If we compare this to the one woman for every four men diagnosed with the more readily identified “low-functioning” autism, we can easily imagine many autistic women are left undiagnosed.

Today, Sophie, who lives in France, has a job interview. If you could see her nervously twisting her hair, you might think she is anxious, like anyone would be in the circumstances. You would be wrong. Sophie is actually on the verge of a panic attack. At 27, she just lost her job as a salesperson due to repeated cash-register mistakes – and it is the eighth time in the last three years. She loved maths at university and is deeply ashamed. She hopes the person hiring will not bring up the subject – she has no justification for her professional failures and knows that she is incapable of making one up.

Learning accounting by herself

Sophie’s wish is granted: the interviewer asks her instead about her time at university. Relieved, she happily launches into an explanation of her masters thesis on meteorological modeling, but he cuts her off abruptly, clearly irritated. He wants to know why she is applying for a temporary job as an accounting assistant when she has no experience or training. Although her heart is racing wildly, Sophie manages to keep her composure, explaining that she taught herself accounting at home in the evenings. She describes the excellent MOOC (online course) she found on the website of the French Conservatoire National des Arts et Métiers, and tells him how one of the questions she asked the teacher on the forum led to a fascinating debate on the concept of depreciation expenses.

Sophie is not good at guessing what people are thinking, but she understands from the way the man is staring at her that he believes she is lying. Overwhelmed, she feels weaker by the minute. She watches his lips move but does not understand what he’s saying. Ten minutes later she is in the street, with no memory of how the interview ended. She is shaking and holding back tears. She curses herself, wondering how anyone could be so stupid and pathetic.

She climbs into a crowded bus, swaying under the heavy odours of perfumes worn by those pressed up around her. When the bus brakes suddenly, she loses her balance and bumps into a fellow passenger. She apologises profusely and hurriedly gets off. In her rush, she trips again and falls to the pavement. “I must get up, everyone is looking,” she thinks, but her body refuses to obey. She can no longer see properly and does not even realise her own tears are blinding her. Someone calls an ambulance. Sophie wakes up in a psychiatric facility. She will be misdiagnosed with a psychological disorder and given medication that will solve none her problems.

A unique way of thinking

Sophie’s story is typical of the chaotic lives led by women whose autism remains undiagnosed because they are on that part of the spectrum where the signs are less obvious. In spite of her impressive cognitive capacities – like the ability to teach herself a totally new field of knowledge – Sophie has no idea of her own talents, and neither do those around her, or only rarely. Trapped in a social environment highly critical of what makes her unique, such as her unusual way of thinking, taste for solitude, and the intensity of her passions, Sophie is acutely aware that these are seen as shortcomings.

If Sophie could be given the correct diagnosis of high-functioning autism, she would at last understand the way her mind works. She could meet other autistic adults and learn from their experience to help her overcome her own difficulties.

Autism is characterised by social and communicative difficulties, specific interests that people with autism are capable of speaking about for hours (like meteorological modelling, in Sophie’s case), and stereotyped behaviours. There are also differences in perception, such as hypersensitivity to smells or sounds, or, conversely, reduced sensitivity to pain. Autism is thought to affect around one in one hundred people.

Seventy percent of people with autism have either normal or superior intelligence. This form of autism is generally referred to as high-functioning autism, as per the latest version of the “bible” of psychiatric disorders, the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders). In this version, all reference to older categories has been removed, including Asperger syndrome. The term Asperger’s is still used today in some countries, however, even though all types of autism are now grouped under a single spectrum and classified according to the severity of symptoms.

Support throughout schooling

Ideally, Sophie would have been diagnosed as a child. She could have benefited from specialised support throughout her schooling, as is legally required in France and other countries. This support would have made her less vulnerable, giving her the tools to defend herself from bullying in the schoolyard and helping her learn with teaching methods adapted to her way of thinking. Upon leaving school, her diagnosis would have opened up access to labour rights, such as disabled worker status, which would have helped her find an adapted employment. Sophie’s life would have been simpler and she would be more at peace with herself.

But Sophie’s problems are twofold. Not only is she autistic, but she is also a woman. If getting a diagnosis is already tricky for men, it is even more difficult for women. Originally, autism was thought to only rarely affect women. This erroneous idea, which emerged from a 1943 study conducted by Léo Kanner (the first psychiatrist to describe the syndrome), has been reinforced by the long-dominant psychoanalytical approach. The criteria defining autistic symptoms were based on observations in boys.

Later, when science replaced psychoanalysis as the dominant model, studies were largely conducted on male children, thus reducing the chances of recognising autism as it is manifested in females. This phenomenon, also present in other areas of science and medicine, has far-reaching implications today.

Similar test results for boys and girls

To diagnose autism spectrum disorder, doctors and psychologists evaluate quantitative criteria using tests and questionnaires, but also qualitative criteria, like interests, stereotyped movements, difficulties with eye contact and language and isolation. But while autistic girls show similar test results to autistic boys, the clinical manifestation of their condition differs, at least in cases where language has been acquired.

With social-imitation strategies, for example, autistic girls have fewer troubles making friends than autistic boys ; they have seemingly more ordinary interests than boys (for example horses, rather than maps of the subway); while less restless than boys, they are more vulnerable to less-visible anxiety disorders, and more adept at camouflaging their stereotyped and soothing ritual behaviors. In other words, their autism is less obtrusive, which means their symptoms are less obvious to their families, teachers and doctors.

Play

Biology and environment explain these differences, and in this case it is impossible to separate nature from nurture. On the nature side of the argument, some hypothesise that girls are better equipped for social cognition and more apt at caring roles. This would explain why they appear to be more interested in the animate (cats, celebrities, flowers) than the inanimate (cars, robots, rail networks).

When it comes to nurture, girls and boys are not brought up in the same way. Socially acceptable behaviours differ according to sex. Although autistic children are more resistant to this phenomenon, the pressure to conform is so strong it still ends up influencing their behaviour, as illustrated by the case of Gunilla Gerland. As a girl, this Swedish woman did not want to wear rings or bracelets because she hated the way metal felt on her skin. Observing that adults could not fathom that a little girl might not like these things, she resigned herself to getting gifts of jewellery, and even learned to thank the giver, before stashing the object away in a box at the earliest opportunity.

The art of camouflage

As autistic girls grow up, the gap between how their condition and that of boys manifests widens. As adults, some autistic women can become highly skilled in the art of camouflage, which explains the use of the term “invisible disability” to describe certain types of high-functioning autism. Incidentally, this is the meaning of the title of Julie Dachez’s 2016 graphic novel, The Invisible Difference.

A page from ‘The Invisible Difference’ (Delcourt), by Julie Dachez.  Delcourt/Mirages
A page from ‘The Invisible Difference’ (Delcourt), by Julie Dachez. Delcourt/Mirages

More and more women are discovering their condition later in life and sharing their experience. Since September 2016, the Francophone Association of Autistic Women (Association francophone des femmes autistes, or AFFA) has been fighting for recognition of the specific ways autism manifests in women. A learned society on autism in women is also being created in France, bringing together the general and scientific communities, with the goal of promoting dialogue between researchers and autistic women.

A specific questionnaire for girls

Historically, major figures in autism research believed there was significant prevalence in women. The Austrian Hans Asperger (for whom the syndrome is named) put forward the idea as early as 1944, as did British psychiatrist Lorna Wing, as early as 1981. But it is only in recent years the scientific community has really started examining the evidence.

Some researchers aim to better understand the specific characteristics of autism in women. Since the beginning of this year, volunteers are invited to participate in a study on “autism in women” conducted by Laurent Mottron, a professor in the department of psychiatry at the University of Montreal, Canada, and Pauline Duret, a doctoral student in neuroscience, in collaboration with myself and Adeline Lacroix, working at the École des Hautes Études en Sciences Sociales in Paris, France. Adeline Lacroix is a master’s student in psychology and has herself been diagnosed with autism.

Other studies are attempting to adapt diagnostic tools for use with female subjects. A team made up of Australian scientists Sarah Ormond, Charlotte Brownlow, Michelle Garnett, and Tony Attwood, and Polish scientist Agnieszka Rynkiewicz, is currently perfecting a specific questionnaire for young girls, the Q-ASC (“Questionnaire for autism spectrum conditions”). They presented their work in May 2017 at a conference in San Francisco.

While there has been an initial trove of interesting results, current research into the specific characteristics of autism in women is raising more questions than it answers. However, the confusion could be considered a necessary step toward the acquisition of knowledge, provided the women affected can contribute to the research and share their point of view on the direction the work should take.

Ordinary citizens can also work towards ensuring autistic girls have the same rights as their male counterparts. By gaining a better understanding of the different forms of autism, everyone can contribute to a world in which children and adults with autism can find their place, and help fight exclusion by creating an inclusive society.

This article was first published on The Conversation.

Translated from the French by Alice Heathwood for Fast for Word.

This article was co-written by Adeline Lacroix, who works with Fabienne Cazalis and was recently diagnosed with Asperger syndrome. A second year master’s student in psychology, she is working on a scientific literature review about the characteristics of high-functioning autistic women.

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What hospitals can do to drive entrepreneurship and enhance patient experience

Hospitals can perform better by partnering with entrepreneurs and encouraging a culture of intrapreneurship focused on customer centricity.

At the Emory University Hospital in Atlanta, visitors don’t have to worry about navigating their way across the complex hospital premises. All they need to do is download wayfinding tools from the installed digital signage onto their smartphone and get step by step directions. Other hospitals have digital signage in surgical waiting rooms that share surgery updates with the anxious families waiting outside, or offer general information to visitors in waiting rooms. Many others use digital registration tools to reduce check-in time or have Smart TVs in patient rooms that serve educational and anxiety alleviating content.

Most of these tech enabled solutions have emerged as hospitals look for better ways to enhance patient experience – one of the top criteria in evaluating hospital performance. Patient experience accounts for 25% of a hospital’s Value-Based Purchasing (VBP) score as per the US government’s Centres for Medicare and Mediaid Services (CMS) programme. As a Mckinsey report says, hospitals need to break down a patient’s journey into various aspects, clinical and non-clinical, and seek ways of improving every touch point in the journey. As hospitals also need to focus on delivering quality healthcare, they are increasingly collaborating with entrepreneurs who offer such patient centric solutions or encouraging innovative intrapreneurship within the organization.

At the Hospital Leadership Summit hosted by Abbott, some of the speakers from diverse industry backgrounds brought up the role of entrepreneurship in order to deliver on patient experience.

Getting the best from collaborations

Speakers such as Dr Naresh Trehan, Chairman and Managing Director - Medanta Hospitals, and Meena Ganesh, CEO and MD - Portea Medical, who spoke at the panel discussion on “Are we fit for the world of new consumers?”, highlighted the importance of collaborating with entrepreneurs to fill the gaps in the patient experience eco system. As Dr Trehan says, “As healthcare service providers we are too steeped in our own work. So even though we may realize there are gaps in customer experience delivery, we don’t want to get distracted from our core job, which is healthcare delivery. We would rather leave the job of filling those gaps to an outsider who can do it well.”

Meena Ganesh shares a similar view when she says that entrepreneurs offer an outsider’s fresh perspective on the existing gaps in healthcare. They are therefore better equipped to offer disruptive technology solutions that put the customer right at the center. Her own venture, Portea Medical, was born out of a need in the hitherto unaddressed area of patient experience – quality home care.

There are enough examples of hospitals that have gained significantly by partnering with or investing in such ventures. For example, the Children’s Medical Centre in Dallas actively invests in tech startups to offer better care to its patients. One such startup produces sensors smaller than a grain of sand, that can be embedded in pills to alert caregivers if a medication has been taken or not. Another app delivers care givers at customers’ door step for check-ups. Providence St Joseph’s Health, that has medical centres across the U.S., has invested in a range of startups that address different patient needs – from patient feedback and wearable monitoring devices to remote video interpretation and surgical blood loss monitoring. UNC Hospital in North Carolina uses a change management platform developed by a startup in order to improve patient experience at its Emergency and Dermatology departments. The platform essentially comes with a friendly and non-intrusive way to gather patient feedback.

When intrapreneurship can lead to patient centric innovation

Hospitals can also encourage a culture of intrapreneurship within the organization. According to Meena Ganesh, this would mean building a ‘listening organization’ because as she says, listening and being open to new ideas leads to innovation. Santosh Desai, MD& CEO - Future Brands Ltd, who was also part of the panel discussion, feels that most innovations are a result of looking at “large cultural shifts, outside the frame of narrow business”. So hospitals will need to encourage enterprising professionals in the organization to observe behavior trends as part of the ideation process. Also, as Dr Ram Narain, Executive Director, Kokilaben Dhirubhai Ambani Hospital, points out, they will need to tell the employees who have the potential to drive innovative initiatives, “Do not fail, but if you fail, we still back you.” Innovative companies such as Google actively follow this practice, allowing employees to pick projects they are passionate about and work on them to deliver fresh solutions.

Realizing the need to encourage new ideas among employees to enhance patient experience, many healthcare enterprises are instituting innovative strategies. Henry Ford System, for example, began a system of rewarding great employee ideas. One internal contest was around clinical applications for wearable technology. The incentive was particularly attractive – a cash prize of $ 10,000 to the winners. Not surprisingly, the employees came up with some very innovative ideas that included: a system to record mobility of acute care patients through wearable trackers, health reminder system for elderly patients and mobile game interface with activity trackers to encourage children towards exercising. The employees admitted later that the exercise was so interesting that they would have participated in it even without a cash prize incentive.

Another example is Penn Medicine in Philadelphia which launched an ‘innovation tournament’ across the organization as part of its efforts to improve patient care. Participants worked with professors from Wharton Business School to prepare for the ideas challenge. More than 1,750 ideas were submitted by 1,400 participants, out of which 10 were selected. The focus was on getting ideas around the front end and some of the submitted ideas included:

  • Check-out management: Exclusive waiting rooms with TV, Internet and other facilities for patients waiting to be discharged so as to reduce space congestion and make their waiting time more comfortable.
  • Space for emotional privacy: An exclusive and friendly space for individuals and families to mourn the loss of dear ones in private.
  • Online patient organizer: A web based app that helps first time patients prepare better for their appointment by providing check lists for documents, medicines, etc to be carried and giving information regarding the hospital navigation, the consulting doctor etc.
  • Help for non-English speakers: Iconography cards to help non-English speaking patients express themselves and seek help in case of emergencies or other situations.

As Arlen Meyers, MD, President and CEO of the Society of Physician Entrepreneurs, says in a report, although many good ideas come from the front line, physicians must also be encouraged to think innovatively about patient experience. An academic study also builds a strong case to encourage intrapreneurship among nurses. Given they comprise a large part of the front-line staff for healthcare delivery, nurses should also be given the freedom to create and design innovative systems for improving patient experience.

According to a Harvard Business Review article quoted in a university study, employees who have the potential to be intrapreneurs, show some marked characteristics. These include a sense of ownership, perseverance, emotional intelligence and the ability to look at the big picture along with the desire, and ideas, to improve it. But trust and support of the management is essential to bringing out and taking the ideas forward.

Creating an environment conducive to innovation is the first step to bringing about innovation-driven outcomes. These were just some of the insights on healthcare management gleaned from the Hospital Leadership Summit hosted by Abbott. In over 150 countries, Abbott, which is among the top 100 global innovator companies, is working with hospitals and healthcare professionals to improve the quality of health services.

To read more content on best practices for hospital leaders, visit Abbott’s Bringing Health to Life portal here.

This article was produced on behalf of Abbott by the Scroll.in marketing team and not by the Scroll.in editorial staff.