Neurodiversity: celebrating the variations of the human mind

Read more about how The MIND Project is promoting Neurodiversity here.

In recent years, there has been much discussion surrounding the topic of neurodiversity and the terminology surrounding the movement. Though there are many ways that the terms neurodiverse and neurodivergent are utilized, there is relevant historical context surrounding their usage and rise. Neurodiverse and neurodivergent were coined by different people and have had different meanings. 

The term neurodiversity was first used by Jim Sinclair, an autism activist. However, its popularization is attributed to two individuals: Judy Singer, an autism rights advocate, in conjunction with Harvey Blume, a New York journalist.

Neurodiversity was intended to capture the neurological differences throughout the human population. Blume himself hoped that the term would draw attention to how neurological differences are pathologized. Since its initial usage, the term has grown to encompass broader neurological differences beyond the autistic community and is used in a variety of areas, from higher education, to disability justice, to medicine.

Yet, while neurodiversity is a term that can apply to any collective, as can diversity, it is important to recognize the underlying power hierarchies that surround neurological traits. Some neurological traits are more common in the general population, and thus, result in the reinforcement of neuronormative standards. Such reinforcement threatens the understanding of neurodiversity and contributes to the marginalization and oppression of those who diverge from predominant neurotypes, or those who are neurodivergent, a term coined by autistic activist Kassiane Asaumasu.

When defining neurodivergent, Asaumasu’s intention was to create an inclusive term that anyone who resonated with could use. To them, at its core, the term describes a brain that diverges. Individuals with neurological and/or psychological conditions may find that they identify as neurodivergent. That being said, the term can apply to anyone who feels that their neurological function differs from that of overarching norms.

Within neurodiversity, there are a variety of different ways that relate to or identify with conditions each individual possesses. For example, some understand their conditions through a medical lens, while others find understanding their conditions as a difference to be more helpful. A combination of these perspectives or alternative perspectives exists within the highly diverse community. While there has been a push by some within the community to “gatekeep” or limit the term neurodiversity to apply to specific conditions, typically those conditions that are lifelong, such gatekeeping feeds back into exclusion. Such exclusion is largely antithetical to the origins of the terms and the movement itself. Critically, in conversations regarding neurodiversity, you should honor and center how each individual approaches their own neurodiversity. 

Resources

Armstrong, T. (2015). The myth of the normal brain: Embracing neurodiversity. AMA Journal of Ethics, 17(4), 348-352. https://doi.org/10.1001/journalofethics.2015.17.4.msoc1-1504

Ian-the-hare. (2015). The tags: '[M]' ,'[D]' and '[B]': Some people obviously prefer to think of their condition as differences rather than disorders, while others find the medical point of view more helpful... [Post]. Reddit. https://www.reddit.com/r/neurodiversity/comments/251jg2/custom_flairs_are_now_available/

Kidwell, J. (Host). (2022, June 17). Gatekeeping the Neurodivergent umbrella [Audio podcast episode]. In Neuroversity. Spotify. https://open.spotify.com/episode/32qV8sr8kkvpWTyLfP0T9s?si=JlSUBBwJTLq7s0bAiu1Jow&nd=1

r/neurodiversity. (n.d.). The terms neurodiversity and neurodiverse did not come from the same person who coined the word neurodivergent... [Post]. Reddit. https://www.reddit.com/r/neurodiversity/about/

Written by Anuksha Wickramasinghe, TMP Neurodiversity Project

Special topics*: Changing the narrative for women in science

*Special topics are crucial and timely topics addressed by TMP that are not directly related to mental health, at their core, but have high potential to lead to mental health challenges due to their repercussions. TMP sees this as an opportunity to highlight those topics and create awareness in the hope of ameliorating their effects.

Although biologically proven inaccurate, de Beauvoir's observation is rather metaphorically true. Newborns in maternity wards are only separated by tags referring to their biological sex. It is “us”, as a society, that decides that female babies are given a pink tag, while male babies get a blue one. Later in life, it is again “we” who decide that girls should play with dolls and fairy princesses, while boys get to play with cars and superhero figures. And the list goes on to prove de Beauvoir's observation right. It is “we” that put the burden of childcare overwhelmingly unbalanced over women, it is “we” that decide to pay women less than their male counterparts for the same job, and it is “we” that translate female assertiveness as authoritarian, thus driving women out of leadership positions.

While we are still far from solving all the societal challenges women face in today’s world (which are surprisingly similar to the ones de Beauvoir discussed about 50 years ago!), we have come a long way from when women had almost no rights in society.

The first and often most difficult step in solving an issue is to admit its existence.

We have at least come as far as to recognize the existing issues, we have made it possible for hard discussions to be part of the conversation, and slowly, things have been changing. Yet, the journey ahead is still long and continued work is necessary.

We initiated the conversation on the International Day of Women and Girls in Science…

Today, March 8, marks the

International Women’s Day.

The purpose of this day is “to uphold women's achievements, recognize challenges, and focus greater attention on women's rights and gender equality” (UN Women).

It is preceded by the International Day of Women and Girls in Science (February 11), a day with a similar purpose: “to achieve full and equal access to and participation in science for women and girls, and further achieve gender equality and the empowerment of women and girls” (UNESCO).

We at The MIND Project (TMP) decided to utilize these dates to celebrate women in science and in our community, recognize and highlight challenges they face, and most importantly discuss strategies to overcome those challenges.

On Feb 11th, the International Day of Women and Girls in Science, TMP’s Communications cluster hosted an open mic discussion on Twitter Spaces about mental health struggles and self-care in academia, especially for women in science.

We had a wonderful and cathartic discussion highlighting once again that “You are not alone!” if you are experiencing any of the things listed below:

• Subversive attitudes and misconceptions about women in science.

• Imposter syndrome (and how it is different from low self-esteem) – more prevalent among women than men.

• How socially established gender differences growing up can have a toll on our mental health and how they can affect our confidence, and certainly our leadership.

• The need to come off as more assertive than their male counterparts to be taken seriously, and the thin line between leadership and a “bossy” attitude.

• The relief of finding a mentor who either understands these challenges or has lived through them, and even better has solutions to combat them.

We are extremely grateful to everyone who joined and contributed to our conversation. It was delightful to witness the discussion unfold, from voicing issues and frustrations to brainstorming strategies and solutions. Some of the strategies discussed include psychotherapy, journaling, science outreach, and creating a community of mentors and allies who are familiar with our challenges and backgrounds.

Speaking of community, many women (and some men!) have already realized its importance, and have been paving the way for better representation and inclusivity, both within science, technology, engineering, math, and medicine (STEMM), and outside in politics, education, arts, and other societal avenues. We happen to have one such inspiring woman in our Advisory Board!

Meet Dr. Beth Stevens…

Dr. Stevens is an Associate Professor in the F.M. Kirby Neurobiology Center at Boston Children’s Hospital and Harvard Medical School, and a member of the Broad Institute and the Stanley Center for Psychiatric Research. Her research focuses on studying ​​neuron-glia interactions in development and disease. She is a recipient of several awards including the Presidential Early Career Award for Scientists and Engineers, the most prestigious award that the U.S. government bestows to young scientists.

Dr. Stevens has achieved so much in her career, especially in a male-dominated scientific research community. But maybe even more importantly, her mentees - and really anyone who has interacted with her, including us - sing her praises and are inspired by her dedication to elevating her trainees and helping with their professional and personal development.

So who better to chat with about the topic of this blog post, as well as strategies to push through the trenches of academia and become a high-achieving and successful woman in science, than Dr. Stevens?

Flexible work arrangements can help…

We met with Dr. Stevens over Zoom, in a time when in-person interactions are making a comeback. Right off the bat, all three of us acknowledged how this “new normal” can feel different for different people and how a flexible hybrid condition can, in fact, benefit many women.

Dr. Stevens recognized how energized she gets when meeting her staff in person and having scientific discussions in the lab, but added that “good things come from having flexibility: a couple of days a week I can be working from home, catching up with my work and being home with my kids” can really make a difference in her work/life balance as a mom.

Gender inequality in science across disciplines is well documented (Huang et al., 2020), and is explained, at least in part, by the fact that women are still usually the primary caretakers in most households, and by the usual unequal division of domestic burden between men and women.

During the COVID-19 pandemic, caregiving responsibilities fell disproportionately on women (Myers et al., 2020), so it is not surprising that the last couple of years had a higher negative impact on women’s research and careers (King and Frederickson, 2021). Younger researchers, black women, and mothers seem to be the most impacted groups (Viglione, 2020, Staniscuaski et al., 2021).

If we take a look at the statistics of women’s scientific achievements during the pandemic:

• Women published fewer research papers than their male counterparts;

• Although the number of entry-level grants submitted by women did not change much during the pandemic, women have submitted fewer “career-advancing, high-level” applications since the start of the pandemic.

Once these findings are coupled with the fact that, during the pandemic, women were overwhelmingly setback by childcare and housework, we realize why many women can benefit from a new hybrid style of work.

The pandemic exacerbated existing issues, but institutions and organizations can respond by creating a supportive environment for women. Additional suggestions and recommendations for fighting these threats include (Gewin, 2020):

• Encouraging discussions and data collection

• Removing the stigma of caregiving and career breaks

• Revisiting evaluation criteria for career progression

• Setting quotas for funding allocation

• Prioritizing underrepresented groups

• Making the access to conferences and scientific results free

On support, personal life and building a family…

“Some of us are lucky to be part of a supportive environment, be it a spouse, family, friends, or colleagues. I often feel that I can do what I do because of my husband’s full support. I have heard other accomplished Professors share the same about their partners. Not everyone has that.” shared Isabel, which is something she has in common with Dr. Stevens.

Both of us [Fatemeh and Isabel] are postdoctoral research fellows, and at a stage where most of our non-scientist peers can invest in long-term plans. While for us, difficulties with ‘ordinary’ things such as financial stability and getting a steady life in general (e.g., planning more long term versus having no idea what city or country we will be next) are everyday challenges. These are struggles that both women and men have to deal with, of course, but for women certain things, like having a baby (and breastfeeding), bear a much higher weight when making life/work decisions. “We are losing amazing talent that is going not because of wanting to go, but because they had to make a choice considering finances and support (family, health, you name it)” empathized Dr. Stevens.

There is no better example of this than the fact that, although the proportion of women and men in STEMM at undergraduate levels is relatively equal, there is a lack of representation of women in senior positions (Charlesworth and Banaji, 2019, Kenney et al., 2022).

“Women that make it to senior positions such as full professor, chairs of departments, leadership roles, deans, is definitely lower than men” admits Dr. Stevens.

The primary issue seems to be related to career progression, with reports showing that men are promoted at a higher rate than women, leading to female underrepresentation at higher positions (Kong et al., 2020). Balancing a successful career while building a family can become quite challenging here, often impossible for some women who find themselves having to choose.

It is up to “us” to promote change…

“There is something important and gratifying about saying that I am going to do something about it, even if it's something small that, down the road, might build something bigger” said Dr. Stevens during our call, adding that “there's always ways to make change, and if you can't make the change, you can decide to change your situation so you're not in it anymore. When you think about what matters to you, having a happy and balanced life and a positive work environment and supportive scientific environment - that should be part of your decision process of where you go and work. Ask yourself how you feel in that environment. Is it right for you? Do you feel supported? Choose a  good lab or, for a faculty position, a department in a community that has a good reputation to support your needs. And then create a supportive environment for your lab when you become a PI [principal investigator], so that your mentees feel supported”.

Dr. Stevens remembered her mentor Dr. Ben Barres, “Ben was an amazing scientist advocate for women in science and underrepresented minorities and anything that was not right. He was known as a person who made change”, and that he saw mentoring as an opportunity to fix things for the next generation.

Male allies are essential for making gender equality a reality, especially since they hold the majority of the leadership positions.

Projects and organizations that are accelerating the gender gap closure…

Soapbox Science, an international public outreach platform for promoting women and non-binary scientists, and the science they do, co-founded in England by Dr Nathalie Petorelli and Dr Seirian Sumner, is raising awareness and fighting these issues by taking women scientists (from PhD students to Professors) on top of woden soapboxes to talk science with the public on the streets. Soapbox Science runs internationally and reached the United States for the first time in 2018 in Chicago.

The Academinist, a podcast about equality & feminism in STEM where two neuroscientists from London discuss inequality with guests, and what we can all do to fix it, is also contributing to these conversations and for change to happen within science and academia.

At Harvard, Scientista, the Science Club for Girls, and WiSTEM are a few examples of great initiatives that are contributing to the empowerment of women and girls in science. Scientista focuses on pre-professional women in STEM, connecting them across campuses nationwide through networking, research, workshops, career fairs, and inspirational talks and panels. The Harvard College Science Club for Girls brings Harvard undergraduate scientists and local grade school students together through a mentorship program. The Women in Science, Technology, Engineering, and Math Mentorship Program (WiSTEM) is a mentorship program for female undergraduates to learn from female graduate students in STEM. All of these programs are cultivating a sense of community for women in science at Harvard.

On the importance of networking and fostering a community…

Dr. Stevens remembered how networking and being part of a community was, and still is, pivotal throughout her career.

When Dr. Stevens started as a PI she created her own junior faculty community by organizing social faculty happy hours, where she would invite everybody from her department and across Harvard that were in the first five years of their faculty position. The aim was to promote conversation and build a community of scientists facing similar challenges and going through similar experiences, which could help each other succeed. She recalled how helpful this experience was to her at the time, and how important it was for her to bring together a community that was otherwise dispersed.

The COVID-19 pandemic has been posing additional challenges for networking, however.

“I already built my relationships and my communities but I do worry that our trainees have missed out on that chance in the last two years, which might put things behind more than usual. We have to come up with ways to make up for it” ascertained Dr. Stevens.

Science and Forbes published tips for networking during the pandemic that can help at an individual level, but institutions and communities play an equally important role.

“​We as a field, especially the more senior scientists, need to create more opportunities for women and other trainees to be able to network and be given the chance to lean in and speak up and be part of the community. Being part of the scientific community, whether it be in your department, in your field of research, and/or in your local area, is really important” said Dr. Stevens during our conversation.

One of the core goals of TMP is to bring people together as a community, so it was wonderful to hear Dr. Stevens’ words of encouragement: “that is what is so wonderful about what you guys are doing at TMP because, in a way, you are bringing the community together across different career levels”.

Looking back at how it started…

Fatemeh and Isabel could not hide their surprise to hear that Dr. Stevens used to struggle with similar situations to them at meetings and conferences: “in the early days, when I was still a postdoc, I would get really nervous to ask a question”, admitted Dr. Stevens, and later she “felt the same way when walking into a faculty meeting”.

Her mentor Dr. Ben Barres and his encouragement were pivotal for her to build her confidence and self perception: “you have to just get the courage to do it. Once you do it a few times you get more confident and then that's part of building that self confidence, but also the perception that you have things to say. I try to get my trainees to do that too, like I learned my mentors taught me to do”, further adding that “if we have stuff to say, we have got to speak up”.

She shared with us that it did not get easier throughout her career progression: “when I first started my lab, especially the first year or two, were really hard. I had just started in a new place and I was always worried about what people were thinking or if I was cut out for it. Am I smart enough? Should I have gotten this job? I’m at Harvard! OH MY GOD! They must have made a mistake…”

Dr. Stevens finds it important to be honest and open with students, young investigators, and faculty about all of this, by looking back and sharing  her struggles and the things she learned honestly and openly: “she's got it all worked out, but it wasn't always that way. It is important to realize that everyone is going through similar experiences”, adding that “it's really important not to be afraid to step up and speak up”.

Leadership at all levels needs to be embraced and can drive progress…

Dr. Brown studies courage, vulnerability, shame, and empathy, and recently completed a seven-year study on brave leadership. Courage, vulnerability and empathy emerge as crucial skills for effective leadership from her research.

Quoting Dr. Brown, “to scale daring leadership and build courage in teams and organizations, we have to cultivate a culture in which brave work, tough conversations, and whole hearts are the expectation, and armor is not necessary or rewarded. We have to be vigilant about creating a culture in which people feel safe, seen, heard, and respected”.

It is time to change the narrative and make history…

March is also Women’s History Month.

History is filled with pioneer women scientists that saw their contributions recognized and appreciated in their lifetime, such as Dr. Marie Curie, the first woman to win a Nobel Prize, and the first person and only woman to win two Nobel Prizes.

However, history is also filled with unrecognized achievements, such as Dr. Rosalind Franklin’s contributions to the discovery of the structure of DNA.

It is time to change the narrative and make sure women have the opportunity to make history!

“We are not going to solve all of this today, but we need to think about how to support each other on these issues; even if we can't change the system [immediately], we need to find ways to support each other” affirmed Dr. Stevens wisely.

Thank you to Dr Beth Stevens for such an inspiring and exhilarating conversation, filled with great advice from a real mentor and role model.

Happy International Women’s Day 2022!

Written by Isabel Castanho and Fatemeh Bahari

Isabel Castanho, PhD, and Fatemeh Bahari, PhD, are the director and assistant director of the Communications cluster at the MIND project.

Dr. Bahari is currently a postdoctoral researcher at the Massachusetts General Hospital studying pediatric epilepsy. Outside of her research she is most interested in demystifying the science that is done in the lab for the general public that benefits from it.

Dr. Castanho is a research fellow at Beth Israel Deaconess Medical center, where she studies neurogenomics of Alzheimer’s disease using bioinformatics. In addition to her research, she is passionate about science communication, especially public outreach, that she sees as a responsibility, as scientist, to contribute in building an educated and informed society.

The MIND Project is one today!

“I don’t see negatives. I see potential to improve and then I ask myself, how can I help?”

This is Walid. He is a newly minted instructor at Beth Israel Deaconess Medical Center, and if there is one thing that jumps out the first time you meet him, it is his extremely positive and “can do” attitude. Therefore, it is only natural that when he saw that interdisciplinary research is required to create meaningful solutions for challenges of the mind, he began brainstorming what he can do to create an environment facilitating such research. This is how a year ago today what we now call The MIND Project, or TMP, was created!

As invitation emails urging interested fellows to contact Walid spread, one by one we got roped in. “We” are the team that now stands behind TMP.

We are all junior scientists - postdoctoral fellows and instructors - under the Harvard umbrella with different stories, challenges, ambitions, hopes, and research topics. What connects us is our mutual drive to create a collaborative environment wherein researchers from all scientific fields can come together and work towards addressing challenges of the mind. These challenges range from scientific research focused on neuropsychiatric and neurodevelopmental disorders to how science can affect mental health awareness, promotion, and destigmatization.

During the past year we have been working to accelerate mental health research by facilitating connections between research faculty and young investigators.

“Investigators seeking to mentor the next generation in their labs use our database to announce openings. Graduate and undergraduate students input their skills, expertise, and research interests. We send the investigators a list of those interested in their research, and they select a student. And this is how the research match is made, inspiring the name MIND MATCH for this program.” Says Mahsa Eskian, postdoctoral fellow at Brigham and Women’s Hospital.

We also created TMP32 which pairs postdoctoral fellows with faculty. This program focuses on skill retention, and scientific and interpersonal fit. “It is important that scientists discover their true passion and assess where they fit best because that is how they go on to produce and do remarkable work.” Says Walid.

We believe that MIND MATCH and TMP32 are not acting only as accelerants for research, but because of their focus on “fit”, they can create a healthy environment for both the mentor and the mentee. Our goal is to protect the mental health of all parties involved by minimizing the interpersonal stress and anxiety that are prevalent in academia. We are proud that to date MIND MATCH and TMP32 have connected more than 38 junior researchers with faculty members within the Harvard community.

True to the backgrounds and ambitions that led us to Walid and TMP, we each chose to pick up a different part of this effort. For Michal Lipinski, postdoctoral fellow at the Harvard department of Stem Cell and Regenerative Biology, TMP's mission coincided with his freshly re-ignited interest in the challenges of psychiatry. Not having the resources available in his immediate environment, within TMP he found a community who is equally interested in addressing mental health challenges. And voilà! Behold our Community Building cluster. As to what this cluster does, well…

Truth is “our President Dr. Walid Yassine will kick our butts if we don't deliver” says Michal graciously providing a sense of comic relief for us all! But we swear he does have a serious side: “I would love the Community Building cluster to further engage the fellows who joined TMP over the last year. I wish to survey people’s goals for their time with us, and structure TMP in such a way that these goals are achievable.”

Similar to Michal, Lokendra Thakur, postdoctoral fellow at Boston Children’s Hospital, joined TMP with an ambition to “work on projects which lead to improving mental health”. His efforts at TMP are directed at “training TMP members in technical skills required for their research projects, i.e. cloud computing”, says Lokendra. The idea is to equip researchers within the TMP with an infrastructure that boosts their productivity creating that sweet sweet feeling of success!

As Michal and Lokendra look within and contemplate how to create a fulfilling environment for all members of TMP, Isabel Castanho, postdoctoral fellow at Beth Israel Deaconess Medical Center and Fatemeh Bahari, postdoctoral fellow at Massachusetts General Hospital, are more interested on the outside. “Amongst the many things that these past couple of years of a global pandemic have dumped on us, one thing is crystal clear: Clear communication of how scientific research and discourse are performed can save lives!” says Fatemeh.

Isabel and Fatemeh see TMP as a platform to explore how clear science communication can lead to more inclusive policies both inside and outside of academia. “At the Communications cluster we are super excited for 2022; we are planning several science communication events (check out our event for the International Day of Women and Girls in Science!!) and we are having difficult but important public discussions (again check us out on Twitter and LinkedIn). Our goal is to use science communication as a tool to educate (and learn from) the population about neuropsychiatric and neurodevelopmental disorders and to promote mental health for all.” adds Isabel. 

We are indeed not alone in our efforts. Since we started, we have been receiving quite a lot of support from faculty members within Harvard and its affiliated hospitals, with exceptional faculty having joined our advisory board.

Georgios Ntolkeras, clinical fellow at Boston Children’s Hospital and Geo to us, has lent us his eloquent communication and writing skills to maintain the link with faculty. Like many of us, he joined TMP “because it advocates for people with psychiatric and developmental disorders and offers a multidisciplinary and collaborative scientific approach to these challenges of the mind”. Within TMP, Geo aims to foster this approach by facilitating the communication between faculty and TMP’s community. 

At a time when a raging global pandemic has suddenly made the world a lot lonelier than it should be, TMP has been a place of refuge for us all. In coming together, not only did we identify ways we can contribute to each other’s research, we found support and motivation to explore our more “non-scientific” ambitions and realized that whether in the form of building community, facilitating communication, or providing professional skills, they are not that “non-scientific” after all!

When we started, we were just a few postdocs, enough to fit in a restaurant booth, and now TMP’s community includes over 170 young investigators.

Sooooo…
We have just learnt how to talk, we are after all only 1 year old, but you can be sure to hear more from us! Just wait until we can walk…

Fatemeh Bahari, PhD, is the assistant director of the Communications cluster at the MIND project. She is currently a postdoctoral researcher at the Massachusetts General Hospital studying pediatric epilepsy. Outside of her research she is most interested in demystifying the science that is done in the lab for the general public that benefits from it.