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Spectrum: Autism Research News

Doctors with autism speak out against stigma

by ,  /  9 March 2023
A group of doctors sit and talk in a hospital lounge.
Open diagnosis: Surveys suggest that about 1 percent of doctors — primarily general practitioners and psychiatrists — have autism.

Thomas Barwick / Getty Images

When Tahleel Javed received a formal diagnosis for autism and attention-deficit/hyperactivity disorder (ADHD) at 27 years old, she felt shock, confusion and relief. Certain reactions began to make sense, like all the times when she felt overwhelmed by noise on the bus and missed her stop, or when she had a full-blown panic attack after a challenging conversation at work. “For as long as I can remember, I have not felt I belonged anywhere up until the diagnosis,” she wrote in an email.

Javed is a psychiatric doctor in the United Kingdom and has what is called “high-functioning” autism, she says, meaning that she is able to live independently but can have trouble with sensory overload, communication and expressing emotions. The condition is typically diagnosed later in life. Surveys estimate that about 1 percent of doctors — primarily general practitioners and psychiatrists — are autistic. Many hide their diagnosis from their colleagues because they worry they will be stigmatized.

But as bias pushes the mental health of some autistic doctors to the brink, others are taking a big step to open up about their diagnosis and advocate for change.

“Compared to even when I was diagnosed a few years ago, I had never heard anything about neurodiversity,” says Sarah Bernard, a neurodivergent geriatrician in Australia. Neurodiversity refers to the concept that differences such as autism or ADHD are a part of the normal variation in brain functioning. “And so it’s super exciting to see it become a hot topic,” she says.

Bernard was diagnosed when she was 38. Like Javed, she found a lot of clarity afterward. Taking a phone call or speaking with a patient in a busy room was something that depleted her energy. She also says she often felt misunderstood because her facial expressions didn’t always match what she was feeling. The thing she dreaded the most was job interviews, which tended to go poorly because of their unpredictability and focus on social norms.

Over the years, Bernard found techniques to mitigate these challenges. “I try to reduce the cognitive load by preparing a lot of scripts,” she says. She often takes phone calls in quiet places and pays attention to her expressions and tone of voice while speaking to others.

Although Bernard and Javed are able to adjust and talk openly about their struggles, many autistic doctors still feel the pressure to hide who they are, out of fear that colleagues or employers will judge them or treat them differently. After Javed stepped forward with her diagnosis, she noticed that her peers would pay extra attention to her and ask if she was OK. “That creates more anxiety,” she says. “We wish to be heard and accepted for who we are. But we don’t necessarily want to be pointed out.”

Others worry that being linked with a condition may cost them their reputation as a reliable health-care provider. “They’re already working so hard to get to where they are. And rocking the boat, sometimes, it’s just not worth it,” says Lawrence Fung, a psychiatrist and director of the Stanford Neurodiversity Project.

For instance, a U.K.-based general practitioner was released from their medical training program after they shared their condition. Their workplace issued the following statement, disclosed in a journal article in 2021:

“The panel regrets to learn of your recent diagnosis of ASD [autism spectrum disorder], but since this is a life-long developmental syndrome which causes permanent impairment of many of the competences required for independent practise as a GP, the panel cannot see how any workplace adaptations could now be put in place to successfully alter your outcome.”

No one is required to disclose their diagnosis to an employer, but some may choose to do so given that they are legally entitled, in the U.S. and the U.K., to receive accommodations in the workplace. The aforementioned trainee has since been reinstated and received an apology after autism peer groups lobbied against the panel.

“There’s still a sort of old-school view sometimes that autistic people are sort of too disabled to be doctors, or that they’re not empathetic enough to be a psychiatrist,” says Conor Davidson, clinical lead at the Leeds Autism Diagnostic Service in the U.K.

In medical textbooks, autism is still mostly defined as a disorder. The U.S. Centers for Disease Control and Prevention defines it as a “developmental disability caused by differences in the brain.” Autistic people tend to engage in repetitive behaviors, hyperfixate on minute details and become overstimulated in busy environments. Some of those behaviors also characterize ADHD, a condition sometimes diagnosed along with autism.

In recent years, the narrative around autism has become more positive: Researchers and advocates are recognizing the strengths of autism traits.

“Let’s say we see someone on the autism spectrum doing something over and over again. And if you’re using the medical model [of autism], you’re going to call it perseveration,” or inappropriate repetition, says Fung. But shift the context, and this behavior becomes persistence or perseverance. Autistic people are also detail oriented and form deep interests in a topic, making them well suited for fields such as research and health care.

Javed also mentions that her psychiatric patients are more comfortable with her when she is open about her condition. “I felt that patients were able to connect with me in a better way,” she says. “Patients tend to give that godly position to doctors. But showing vulnerability as it is and then showing them that it could be one of your strengths is something that gives a lot of confidence to the patient.”

Studies have found that people with autism often lack support in the workplace, which can affect their mental health. For instance, autistic people are four times more likely to develop depression than those without autism. Almost half have severe anxiety. These challenges can sometimes compound into suicidal thoughts. Up to 66 percent of adults with Asperger syndrome (a diagnosis that has been subsumed into the larger category of autism spectrum disorder) have thought about taking their own life, and 35 percent have attempted suicide, according to a 2014 study at the University of Cambridge in the U.K.

“Autistic people are like square pegs,” Javed says. “If you try to hammer them in round holes, you will not get the peg across. You end up breaking it.” She recalls the sudden death of a doctor in one of her online autism support groups. They left a note that said three things: I don’t have hope for this community. Don’t disclose my identity. I’m done with this.

This loss spurred Javed to start a nonprofit called the Society for Tourette’s, Autism and Neurodiversity. She hopes the organization will create a space for neurodivergent doctors, educators, artists, philanthropists and other professionals to form a community. Part of her work is raising awareness of what neurodiversity can look like — and she’s not the only one contributing to this effort. Today, Autistic Doctors International (ADI), a peer support group, has more than 600 members around the world. And they’re working to bring neurodiversity to the forefront.

“I had never heard of other autistic doctors until two years ago,” says Bernard, the Australian lead at ADI. When she first came across the organization in 2020, she was excited to learn there were enough autistic doctors in the world to form an online group. “It’s really validating to talk to others who have to juggle sensory overload and executive dysfunction and social differences in a health-care workplace.”

In an effort to improve workplace policies, the organization also conducts research on the barriers autistic doctors face in health care. ADI recently partnered with the Royal College of Psychiatrists, the leading professional body in psychiatry in the U.K., to raise awareness of neurodiversity.

“As a college, we wanted to include neurodiversity in our equality and inclusion plan more explicitly than it has been up until now,” says Davidson, who is leading the efforts to identify areas that need improvement.

In August 2022, the Royal College revised its Equality Action Plan to highlight three priority areas for autistic doctors. The updated plan emphasizes the importance of creating resources to help workplaces make adjustments for neurodivergent people, improve accessibility at training workshops and conferences, and use neutral language when talking about autism — such as calling it a condition rather than a disorder.

Autistic doctors say this is a sign that neurodiversity is becoming more accepted in the medical field, according to a response paper by ADI published last year in the British Journal of Psychiatry. “There is slowly a shift to the medical world being a bit less deficit-focused and starting to recognize the positives and the strengths of autism and ADHD,” Bernard says.

With every voice, the effects continue to ripple out. A doctor approached Javed after seeing her in a televised appearance on the BBC. The doctor had recently received an autism diagnosis and was struggling to come to terms with it.

“They said that they felt internally or permanently broken,” she says, “but hearing my diagnosis, it gave them confidence and courage that there are possibilities.”

This article is provided by Scienceline, a project of New York Universitys Science, Health and Environmental Reporting Program. It has been slightly modified to reflect Spectrum’s style. (Ivan Oransky, editor-in-chief of Spectrum, is faculty adviser at Scienceline and a distinguished writer-in-residence at the university.)

If you or someone you know is having suicidal thoughts, help is available. Here is a worldwide directory of resources and hotlines that you can call for support.

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