An interview with scientist and neurodiversity advocate Mariana De Niz.
TIR: What’s been your career arc to date?
Mariana: I was born in Mexico City a while ago 😀 and did my early education between Mexico, France, and Australia. In 2006 I started my BSc in Immunology at the University of Glasgow, in 2010 my MSc in Control of Infectious Diseases at the London School of Hygiene and Tropical Medicine, and in 2011 my PhD in Cell Biology at the University of Bern in Switzerland. My postdoctoral career has been in 3 labs with SNSF, EMBO and HFSP fellowships. The first lab I joined was at the Harvard School of Public Health in Boston, USA, which later moved to Glasgow University in the UK. The second lab I joined was at the Institute of Molecular Medicine in Lisbon, Portugal, and the third lab I joined was at the Pasteur Institute in Paris, France. During this time I have focused fully on parasitology and microscopy. The parasites I have studied are mostly Plasmodium, the causative agent of malaria, and Trypanosoma brucei, the causative agent of sleeping sickness and nagana. I have in parallel worked on various initiatives and organizations that aim at democratizing science and promoting equity and inclusion in academia. This includes ASAPBio, preLights, FocalPlane, and ECAG from eLife.
You’ve written very candidly about your autism diagnosis and the process of “coming out” as autistic. One of your earlier coping strategies was to mentally split yourself into “the scientist” and “the person” – has going public helped you bring those selves together, and has that helped you improve as a scientist, do you think?
These are very different questions. My main aim with ‘coming out’ as autistic is to raise awareness, to go a step forward towards equity and inclusion of autistic personnel, to promote better (i.e. equal and humane) treatment towards autistic people, to address some myths and prejudices that seem to be rooted in ignorance, and to help the younger generation of autistic scientists find their way – to let them know they are not alone. The essay in JCS was just a small piece towards this – to show others the human side that sometimes gets a shadow cast on it, because of labels or tags.
Together with many others, I wish to change the game for future generations, so they don’t have to face many things I (and many other autistic people) have had to face. But I am a realist: I do not think I will see significant changes perhaps even in my lifetime. True acceptance (if any) of neurodivergent people will likely take generations. Take as an example the struggle of other minorities. Women, for instance – I recently watched the movie ‘Radioactive’, which is a biographical dramatization of Marie Curie’s life. There you see all the discrimination, misogyny and terrible treatment she had to face, even based on her nationality. While we have come a long way from that level of gender-based aggression, it’s still not over and there’s plenty of room for improvement. I wish people didn’t get confused with survivorship bias. This specific example of Marie Curie spans a timeframe between, say, 1880 and 2023 (that’s almost 1.5 centuries). Autism is only now starting to get addressed. So how can I believe that we are anywhere close to achieving equal treatment for autistic people, if we don’t even have equal treatment for women (a struggle that has been going on for much longer)?
After my essay and after a presentation I gave at the British Society of Parasitology Meeting in York, some people have approached me and asked me more about autism, and I appreciate this interest. I think change starts little by little, and I see these as baby steps.
To answer the question, I still split myself into the scientist and the person. It’s a survival mechanism. Especially in academia, which has many elitist practices, it’s almost a requirement. That has to change, and being optimistic, I am sure it will for future generations. But for that to happen, there’s a long way to go.
Whether disclosing that I am autistic has helped me improve as a scientist, I don’t personally see how it would (or wouldn’t) – I think rather it has helped me personally to overcome the insecurity wall of “what will people think if I disclose I’m autistic?”. People will think what they wish and this is beyond my control – I am not sure this is a conclusion I reached after sharing my essay. Rather, it might be a conclusion one comes to with the ‘wisdom’ of age 😀 I’m no longer in my teens or in my twenties, when other people’s opinions have more weight on one’s self-perception.
The treatment hasn’t changed: people who were tolerant and understood and respected me before, continue to do so now. People who were prejudiced or biased (even if unconsciously so) are still so, and people who are blatantly intolerant to anyone different are still so. I think change takes generations. And autistic people have been ostracized for centuries. Whoever says “we have reached equality” has not been paying attention, and very likely speaks from a position of extreme privilege (whether they accept and realize this, or not).
While I don’t expect to see significant change in my lifetime, I do hope to be one of many who plants the seed so that autistic people in decades to come, don’t have to suffer what past and current autistic people do, or have to go through it alone – this is specific to academia, and to general everyday life. The statistics for suicide amongst autistic people (young, middle-aged and older) is very high, and this has to change. Once again, it won’t change with one talk, or one essay.
What do you think are the biggest barriers against inclusion to autistic people in science? Or, rephrased: What are the things you’ve experienced that you felt held you back as a scientist?
You touch on a delicate topic, which I completely did not touch upon in my JCS essay. When I was very young, I was 100% sure I would never be a politician or a lawyer, because to me these were professions where one needs social skills to a very high level. I naively thought science wasn’t so – and I was very wrong. Science is very social and very political and while your capacities as a scientist might bring you 50% of the way, the rest is all about your social skills. How likeable you are perceived to be, how approachable, how diplomatic, how charismatic, how much you network, how much you tell people what they want to hear, how much you don’t tell people what they don’t want to hear, and so on. One only has to look at the huge mental health crisis, at the number of people who suffer abuses in academia and then are silenced, or who are not believed when they report abuses, and so on.
I have met very nice people who are autistic, and because – like me – they don’t understand the social game, they are often disliked and are not treated as colleagues or as equals (and to this we can add the racial and gender aspects, and we start building a completely impenetrable ceiling – not glass, but titanium). I personally don’t feel I belong, and many times have been treated very much not like an equal.
The academic system has many faults, and a lot of early career researchers’ success depends on remaining silent regarding those faults, and learning how to play the game, despite those faults. Autistic people often say what they think: I still don’t understand why I shouldn’t point out the faults of the system. But sadly, this is never welcome, and it’s a big ‘no no’ for a successful career. You’re seen as ‘trouble’ or even as a threat. I have been in interviews where I have been asked if being in lab XYZ was great, and frowned upon when I said maybe it wasn’t that great.
Often, people think that because one has a lower level of social skills, this allows them to disrespect you or treat you with disdain. And like other minorities, these are micro-aggressions (or even blatant aggressions) that one has to put up with constantly, and still deliver at the highest level. Productivity above everything else, regardless of what you, personally, have to deal with behind closed doors because of the prejudices and aggressions you face on a daily basis. While the charismatic and diplomatic people get generous positive feedback, someone autistic likely doesn’t. So the self-motivation and self-esteem part that comes into the equation is 100% up to us in a career that already suffers from enormous mental health burdens such as imposter syndrome. If you add to this that most external input is negative, this selects for extremely strong people among the minorities – and it shouldn’t. Still, many autistic people prevail, but the cost is very high.
You are a BIPOC scientist as well as a neurodiverse one. Do you think that your autistic behaviour has ever been framed in racial terms rather than neurodiverse ones?
Pascale Guiton put this really well during discussions held at the DEI (diversity/equity/inclusivity) sessions of the British Society for Parasitology York meeting this year – people think that the different aspects that give one minority status (eg. gender, race, neurotype, mental health problems, etc) are additive, but they’re actually multiplicative. Even before I disclosed I was autistic I would wonder, why am I treated differently? Is it because of my gender? My race? So I started paying attention to how other Latin Americans were treated in group settings, and sometimes I’d see that they were also not treated as equals. Of course, if this subject was ever raised, many people deny either practicing or tolerating discriminatory behaviour in their labs, and then it becomes an issue impossible to address. In order to address unconscious biases, we need to first stop, be able to receive feedback from the affected groups without getting all defensive, and then taking action to address these biases. Instead of saying ‘no, my group and I are super-inclusive – you’re imagining things/playing the victim’.
During my early career as a scientist the attitude was very much “We’re here to do science” and any personal challenges you faced was your business – the ‘system’ takes no responsibility, yet it’s the very framework that tolerates elitist practices (be this in the context of race, gender, or anything that makes one different). In science it’s common to hear that you have to build a thick skin, when actually we should treat each other better, in my opinion. Yet it’s truly disappointing to know that there are people out there who think academia is not discriminatory and don’t see the need for, or value of inclusive representation.
Can you give some examples of the way in which being autistic can create problems for scientists in an everyday context?
There is the sensory and social overload: in any academic/social occasion (like meetings, conferences, courses, etc) one is expected to socialize 24/7. Not doing so translates as lack of commitment, lack of interest, lack of compromise, lack of involvement, etc. There is still a lack of awareness that not everyone has the same social budget – and I don’t think we should be expected to. Perhaps, despite my passion for science, the huge amount of light, noise, smells, and endless interactions with many people I barely know, is very taxing.
Open-plan labs are another issue – I know this is against the fashion right now, but this design is not very friendly for people like me. There’s so much light, so much open space, so much noise. As an autistic person, sometimes you need a place for decompressing, stimming (these are the repetitive behaviours like rocking back and forth that are soothing in situations of stress) – and open-plan labs don’t offer that.
In a career that is so competitive, another ‘problem’ is that many autistic traits can play be perceived as an advantage: one can be hyper-focused, work for hours without breaks, and be hyper-productive. While on their own these traits are not a problem, in a competitive career they are. Why? Because if in addition one has relatively few social skills, all this makes you completely unlikeable at best, and contributes to exclusion. I have experienced this rejection not just from some colleagues, but PIs too. Just to be clear, this didn’t start in science. This started in childhood – it was the same at school.
You’ve been outspoken about the need for DEI (Diversity/Equity/Inclusivity) initiatives to be more than token gestures. What are some concrete things that individual bench scientists, group leaders, departmental organisers, and meeting organisers could do? (e.g. have a Diversity/Equity/Inclusivity session in the middle of a keynote?)
I don’t know where to start.
For individual scientists, my advice would be to not be judgemental of others who are different to you, and that someone autistic is an equal to you and not inferior. They don’t deserve any aggressive or belittling treatment simply because they have different social understanding. But as I mentioned before, I have met in my career people who are naturally kind and tolerant. I have met others who have changed their approach for the better, and truly showed interest in knowing what the challenges of someone autistic were. And I’ve met people who are blatantly intolerant. I think it’s an individual decision, what to be for your autistic colleagues.
To group leaders, I would say the same as for individual scientists. In addition, I would say, just because autistic people don’t have the highest social skills doesn’t mean we don’t notice the rejection and inferior treatment we are many times given. And just because autistic scientists might do science different to you, or communicate science different to you, doesn’t mean we are worse scientists or shouldn’t be doing science. Remember that as a mentor, always. Otherwise, you can cause a lot of damage.
I have met several leaders that say they believe in equity and inclusion, but this does not reflect in their actions. For instance, taking only autism as an example: for me it’s a huge red flag if I tell a leader that I am autistic and they say “it’s not a problem for me” without asking further questions or learning about what autism is. I have met so far only ONE group leader who wanted to know more about autism, and I felt this was a genuine effort. I remember one of my doctors suggested that I recommend her to watch “The Good Doctor”, as some of his traits are similar to mine. I prefer it if someone wants to know what the challenges will be, and is prepared for that, and is ready to listen. Rather than (as we say in Latin America) try to block the sun with a finger and pretend “we are all the same”. What does that mean? Usually, it means that they will be blind to my challenges under the pretence that they don’t discriminate.
Equity and inclusion are what we are aiming for, but it’s not at all a reality right now, and ignoring the differences certainly doesn’t bring us closer. In my opinion it’s the lazy approach if I say, “It’s ok. I’m tolerant. We are all the same” without even really knowing what that person’s challenges are or even asking. I see the same for other minorities – for instance race. If someone tells me “We are all equal”, but I know they have done nothing towards even listening to the struggles of other races (and by this I don’t mean their one minority friend, but taking everyone’s opinion seriously, and really doing something valuable towards equity), this shows me they are out of touch with a reality that is not theirs. It doesn’t inspire trust. It suggests they are not at all ready to take these differences seriously, nor change the game for things to be equal for everyone, but instead keep the privileged groups in privilege.
I would also add: Don’t treat anyone like you are doing them a favour. I don’t owe anyone a favour for ‘tolerating’ that I’m autistic, or hiring me as an autistic scientist. Like any other scientist, I have expertise I’m bringing to the table, and (I hope) other valuable things too. If we ever are going to achieve equity and inclusion, then we shouldn’t be treated as if we owe everyone a favour– just because we have a disability, or a different way of socializing, or different ways of working. Give everyone equal opportunities. But this has a deeper root: I still meet academics who think education in leadership is unnecessary. I have various family members in corporate positions, where they were trained (regularly) on leadership and people management. I think academia’s greatest faults arise from this denial of the need of training in these skills. It’s ridiculous that we spend 10 years training on scientific protocols and writing, but never receive formal treatment on the most important of all: managing a group of people who put their trust in you as a leader, and on whose careers (and lives) you as a leader will have enormous impact. I’m sure this will be basic in future generations and one day we will look back and wonder how we ever accepted anything else.
About meeting organizers, I think giving a voice to autistic people is vital – and yes, including it in a main session is a good start. Not just autism, but all minorities. And ask autistic people what their needs are (and special accommodations needed) when it comes to conference organization. These are not favours or “special treatment”. My wish is that in some decades, fulfilling the needs of all scientists equally is a given. It should be as basic as offering food, toilets, and chairs in a conference. These are not “special accommodations”. These are basic needs for everyone. And just like that, for people with specific needs, certain accommodations are basic too (even if for non-autistic or non-disabled people they are not).
Science is widely acknowledged to be a hypercompetitive career these days – do you think this negatively impacts Diversity/Equity/Inclusivity initiatives, even if awareness has improved?
Absolutely. I’ve heard all sorts of wrong statements, beyond the scope of autism. I’ve heard that “We won’t lower the standards of our selective programme just to be inclusive”. I’ve heard people refusing to select candidates from LMICs (lower/middle-income countries), because “it will be a pain to train them”. I’ve heard more aggressive lines (actually this one was said directly to me): “I don’t know why foreigners from lousy countries come here and take our jobs”. I’ve also heard “people from Third World countries get prizes, awards and prestigious fellowships out of pity or to reach a quota, not because they truly deserve it”. This was all within an academic setting.
I think we should all become aware of one thing: at present, science is NOT for everyone, and we are NOT all equal. I’ll give you another example – before I started publishing as a scientist, I was told “you should choose your scientific name in a way that it doesn’t show you are Hispanic/Latin American. This is because there is huge prejudice that science coming from Latin America is of poorer quality and not worthy of academic respect.” I was barely 20 years old, and at that point, this is exactly what I perceived too. I chose my academic name as Mariana De Niz. This is not my full name. I have seen with admiration and pride that many people of newer generations have addressed this issue, and insist on publishing with their full names. Our background shouldn’t impact whether we are thought of as credible scientists or not. The same is true for anything that makes us different, be it disabilities, neurotypes, gender, race, parenthood, etc.
That’s why representation is a MUST – representation at the very top should include representatives of all races, all neurotypes, disabilities, genders, etc. Otherwise, at the decision-making level, in decision committees for fellowships, grants, promotions, or whatever career progression steps, etc, the struggle of everyone else who is different to the one dominant “class” in academia is ignored – even if they believe they are very inclusive.
When I visit any research institute I tend to look at one important thing: if the demographic of personnel in services (cleaning, kitchen, etc) is very different to the personnel in junior academic positions (PhDs, postdocs), and this one is very different to the personnel in leading positions, there is a problem of inclusion. And if the institute is doing absolutely nothing to address the issue, this is a red flag.
I think the hypercompetitiveness of science leads some people to believe they are where they are out of merit only, without taking into account a lot of their privileges. This includes, for example, the possibility of publishing in high tier journals – this cannot be afforded by everyone and in some countries, the publishing fees of a high tier paper would sustain the lab for an entire year. These are all examples beyond autism of course, but all have a similar root. In terms of autism, this relates to the social skills. The hypercompetitiveness includes how much support you receive from your network, and with little social skills, this might put you at a disadvantage.
Another thing I think should be addressed is the deleterious mental health effect of this hypercompetitiveness. I was recently watching the movie “The Weight of Gold” with my cousin, and it hit a nerve at several points – on the pressure to overperform and exceed expectations, on how once you become too old you are no longer valuable (don’t all the prestigious fellowships have a timebomb attached to them? i.e. years post-PhD and so on), on the low salaries, etc. They could easily be speaking about science. This is a quote from Olympic champion Michael Phelps himself in that documentary: “I don’t think anybody really cared to help us. I don’t think anybody really jumped in to ask us if we were OK. As long as we were performing, I don’t think anything else really mattered.” Isn’t that true for science, where impact factors and number of papers is all that matters? Even worse – if you develop mental health issues from this environment, or express them out loud, you become a liability. You’re seen as weak, or ‘complicated’, or not really committed to science, or not worth the trouble. Now if we add to this additional burdens (like dealing with discrimination), it’s a recipe for disaster. I for once, have given my entire life as a young adult to science, with it’s 24/7 philosophy of working hours. The moment you start suffering from this, ‘you’ are the problem.
There’s room for improvement. Plenty of room. But again, this will fall on new generations. There are older generations who will think I’m whining by saying this. Again, throughout my career, among all the institutes I’ve been in, I only know one… ONE… in which I didn’t hear about someone committing suicide. In all other institutes, suicides among academics happened (whether the institute decided to keep quiet about it, or shift the blame to the person’s “instability”, is something else).
What do you think lab members should do if they have a colleague who they think is not neurotypical or who may be masking?
I think it’s a personal decision for the autistic person to share this information. I don’t think anyone should be pressured to share this information. If they haven’t shared it, perhaps they don’t feel it’s safe to do so.
However, you can express your genuine friendship. In fact, for me, it was a friend who knew I was struggling with the leadership style of a PI, who randomly told me “Mariana, have you ever wondered whether you might be autistic?”. I knew the answer to that already. He had always treated me with the greatest kindness and respect, and his comment signalled to me that he valued me as a friend regardless of me being autistic. I knew, when I told him, that this wouldn’t change our friendship at all. It all started there – me sharing the diagnosis with others. I think the key is to be genuine. Your autistic colleague will catch this, and might or might not be encouraged to open up. Give them space and time.
What are some of the most pervasive myths about autism?
- That all autistic people belong to one demographic. Movies, especially in the last two decades, tended to show only young white boys as autistic. Autism is present across all races and genders. And it’s for life, someone born autistic will always be autistic.
- That vaccines cause autism. This is certainly not true.
- That all autistic people are severely disabled and that we’re limited in what we can do. This is also not true. Autism is a spectrum, and the range of abilities and capacities is huge – there are autistic people likely in every profession.
- From the previous point: the autistic spectrum is not linear!
- That autistic people are a problem. I think empathy and understanding come a long way. If you’re not ready to do that, perhaps you should reconsider whether you can or should, in fact, work with someone autistic.
- That autistic people are geniuses with weird personalities. I think the portrayal in films is usually of either severely autistic people, or geniuses. But again, it being a spectrum, there’s people with all levels of ability.
- That autistic people don’t get any social cues. This is sometimes used as an excuse to treat us rudely. We do get social cues.
- That autistic people have no empathy. This is, again, not true. We might express it differently to neurotypical people but this does not mean we don’t have it.
- That autistic people can’t be good friends. This is also not true, and this assumption leads many times to a rather lonely life.
- That autism is a disease. It’s not. It’s a neurotype characterised by many features, including disabilities that are social in nature.
- That autism is a mental health problem or a psychiatric disorder. They are different things. It’s a neurotype.
- That it’s shameful to be autistic, or to have an autistic relative. There’s stigma attached to it, and this is only hurtful and leads to exclusion.
- That “we are all a little bit autistic”. I’ve heard this many times. It’s not true, and it diminishes the challenges and struggles that autistic people face.
The pandemic has produced some enormous changes in the way that scientists operate. How many of these changes do you think facilitate positive Diversity/Equity/Inclusivity changes, and what do you think should be retained?
The main one I appreciated is hybrid meetings and remote work. I love this, but of course have faced many extroverts who have strong opinions against both. I think for me personally, I feel much more comfortable in my own environment, so remote participation in meetings is great. Moreover, I feel this is in line with inclusion of many minorities, not just autistic people. I think we realized the job could still get done remotely, and academia didn’t collapse when people started having perhaps more flexible schedules. I think this should also be retained.
If you have an opinion about any of the issues raised here or would like to find out more, leave a comment in the box below and we’ll get back to you.