Neurodiversity: How to make your lab more inclusive (part 2)

In my previous column, I wrote about ways of thinking about neurodiversity in the lab and provided general guidelines for supporting neurodiverse lab members. This week, I’m writing about specific examples and tips to help make the ideas discussed before more concrete and easier to implement. If you read my previous column and said, “I’m on board with this! But what exactly can I do?” This column is for you! 

As was the case with part 1, this article is for PIs. Making a good working environment for neurodiverse team members takes participation from all people involved, but many lab members who are neurodiverse are already adapting the best they can, so this article is to help principal investigators adjust their side of the equation.

Neurodiversity is broad. For this article, I’m focusing on three manifestations: attention-deficit/hyperactivity disorder, autism, and depression and anxiety. 

Adjustments for ADD/ADHD: active participation and organization

ADD/ADHD is different in different people. Some may be more easily distracted, some may be more impulsive, and some may be more energetic and active. ADD/ADHD can bring many strengths, among them creativity and problem solving, so long as difficulties of the condition are managed well.

In my conversations with lab members with ADHD for this series, two areas came up as problematic. First, having to sit in lectures, symposia and lab meetings. And, second, having to organize many details and execute long and complicated experiments.

One Ph.D. student, who I will call Elise, told me that her ADHD severely limits her ability to pay attention beyond about 45 minutes to an hour when she’s being asked to sit still. This presents a problem for her in lab meetings and lectures. She said that PIs can help by structuring lab meetings in different ways.

“I’ve found that when labs have imposed a limit on the length of a lab meeting — for example 45 minutes for talk, 15 minutes questions, then we’re done — that really helps,” she said. “Another option is to have lab meetings be a bit more active. I have liked when we’ve occasionally had meetings that were a roundtable discussion — where everyone presents a bit of something they are working on that week or month.”

She acknowledged that this might not be reasonable for every lab meeting.

“Maybe we can’t do this style every week, but these types of meetings help me stay engaged," she said. "I enjoy the practice that comes from giving a formal talk, but I think you do run into a problem when it’s people just sitting and listening.”

Elise described what can happen if she’s forced to sit in endlessly long lab meetings: “One of the problems that I have with lab meetings that are just lectures is that I lose the project. If I can’t pay attention, I lose my grip on what is happening with the project, and then I don’t know what’s going on in the lab. Then, I need to pay that much closer attention next time, which of course doesn’t happen. So, having a reorient time, a different type of lab meeting every so often, is important.”

If lab members are left out of lab meetings because of the format, then their contributions to the discussion and potential innovations are lost. It’s worth it for the lab to make sure everyone can follow and participate.

Getting and staying organized can be hard for people with attention disorders.

Elise worked in an industry lab before going to grad school. “That lab adhered to good manufacturing and lab practices," she said. "Everything had to be documented by law, so they had systems in place. They said, ‘OK, all of your HPLC validations have to go in this folder. Method development goes here.' It seemed to some people a little micromanage-y, but having something that you are trained to do organizationally helps.”

This method would be helpful to everyone, it seems, since most of us have had the experience of unsuccessfully trying to decipher a former lab member’s notebook. Having clear, detailed standards and guides for keeping the notebook, for example, and organizing raw data and results makes sense.

Jack, a Ph.D. student (introduced in my previous column) has depression and  ADHD. He told me about his struggles with not having guidance on how to organize or plan experiments.

“A lot of my failed experiments are because I make stupid mistakes because of my attention problems. It was a huge reason I felt demotivated, and it flamed my depression," he said. "I’m always conscious of that when I set out to do an experiment. When an experiment fails, I always wonder, ‘Was it something I messed up?’ I ended up not trusting things, because I wouldn’t know if I messed it up. And then you think, ‘What’s the point?’”

One added struggle — in academia especially — is stigma.

Jack said: “It’s hard to ‘come out’ to my boss. There’s stigma with ADHD and a fear in me when I say that I have ADHD ... I am afraid that I’m incompetent or can’t do the work. The experiments are very detailed, with multiple steps, and it’s very easy for someone to mess up, and it’s even easier for people with attention problems to mess up.”

A PI who is willing to offer help can not only make the work easier and more efficient but also can help dispel this fear of being seen as incompetent. A PI can let a student know that, while they might be disorganized or need direction or guidance, it by no means translates to the student being incompetent.

Lab-wide systems designed by the PI could be helpful to students like Jack. In the absence of those systems, however, a PI could sit down with the student  to work out a personalized system. Also, Elise reported using checklists “all the time” to control for distractions. A PI can create checklists to help students feel less demotivated and discouraged.

This Forbes article by Victor Lipman mentions several ways bosses can help employees with ADHD. While Lipman's advice was criticized by Alex Massey in this Medium post for seeming to encourage micromanaging and isolating employees, some of Lipman's suggestions could be effective if done in a respectful way. Both writers agreed that reducing distractions is useful. That can mean allowing an employee to go home to analyze data in peace and quiet, which Elise said helps her quite a bit, or allowing employees to work in an empty conference room. Both authors agreed that organizational aid, which can take the form of online calendars, list-making apps, paper checklists or anything in between, can help.

Now, a few words about procrastination. Not all people with ADD or  ADHD have problems with procrastination, but, if that comes up, one thing mentioned in this article by Peter Shankman and Edward Hallowell in ADDitude magazine is setting real deadlines. They wrote:  “If someone says they need a project ‘soon,’ that’s meaningless to an ADHD brain … ‘Thursday, 2 pm’ means it will get done. While ‘Whenever you have time’ means it will be forgotten.”

They also made this important point: “Most adults with ADD don’t realize how good they are. After a lifetime of struggles and criticism, they see themselves in a far less favorable light than the rest of the world sees them.” PIs should keep this in mind.

Adjustments for autism: clarity, flexibility and advance notice

Keeping in mind the saying, “If you've met one person with autism, you've met one person with autism,” there are still some pointers that can help make the lab better for an autistic member, to maximize their strengths, and allow them to be their best self. (A good place to start is this tip sheet by the Frist Center for Autism and Innovation at Vanderbilt University.)

Autistic sources I interviewed for this series emphasized the importance of clarity: being clear about expectations, being clear about what you mean, and being clear about behavior.

One autistic student, who I’ll call Emily, told me she thought, for almost the entire time she was in a lab, that her PI was unavailable to help her. In her final year, she discovered that her PI had been hinting to her all along that she could come talk to him whenever she wanted. She made this discovery through a convoluted chain: A labmate told someone else, who then explained to Emily that the PI was trying to hint to her that he was available because he didn’t want to seem too pushy. She hadn't understood the subtle shades in the PI's statements, so she struggled alone for years.

The lesson for PIs is to spell it out: “If you’d like to discuss your project with me, just knock on my door. I am available.”  Or, even more direct, “Let’s talk about your project tomorrow.” 

Of course, Emily could have asked for help. However, given the power dynamic inherent to the PI–student relationship, when it was clear that Emily was floundering, and remember that it went on for years, it was the PI's responsibility to step in and offer clarity and direction.

Clarity in communication means not relying on tone of voice or facial expressions to get a point across. Autistic people often rely most on the words themselves to carry information, not the clues accompanying or behind the words.

Dave Caudel, director of Vanderbilt’s Frist Center for Autism and Innovation, said he can remember thinking, as a kid, that people must have been taking some secret class that he wasn’t taking, because he never seemed to get things that other people somehow just knew about communicating.

Harold Sipe works at ADK group, a company that is committed to hiring neurodiverse employees. Sipe said that managing and adapting to his autistic co-workers and employees made him a better leader for everyone. “I couldn’t be vague anymore. It made me a better manager in general by forcing me to make sure I always had a clear vision,” he said.

Flexibility is also important. Caudel ended up leaving a lab that didn’t offer him flexibility when it came to work hours. “(T)he PI wanted people to keep all the same hours, and assumed they all had brains just like his," he recalled.

But he was able to do his best work once he switched labs.

"The new adviser gave as much flexibility as I could handle. Now, when I needed help and asked him for it, he was always there for me. But he was absurdly flexible. He let me mold into whatever shape worked best, and I thrived. And then I found out he has a son on the spectrum,” Caudel said.

Flexibility is important when communicating, too. This is true for all people, not just autistic people, but it can be more apparent with autistic people.

Caudel explains: “Some people are visual thinkers, where hearing the words is not enough for them to accurately retain complex subjects. Sometimes they have to see it in writing. Or see a picture. Others are verbal. If you, the PI, are really good at listening to instructions and lectures, don’t just assume that people in your labs are carbon copies of you. Don’t just speak the instructions; throw in a list. Be multisensory when giving instruction.”

Similarly, if something you’re saying doesn’t seem to be getting across, try a different way of saying it.

Another thing to be aware of is sensory processing difficulties. Strong smells, loud noises, bright lights, big crowds in small spaces, and other stimuli can make someone with autism feel miserable and even lead to meltdown.

Meltdowns are sometimes condescendingly described as tantrums when people see them occurring in children, but a meltdown is distinct, being closer to an overwhelming fight-or-flight response. (Autistic YouTuber Amythest Schaber, who runs the series “Ask an Autistic,” describes meltdowns here.)

Caudel described going into meltdown caused by sensory overstimulation: “My IQ drops by order of magnitude. I used to lie and say I was sick because I was in a sensory processing meltdown.”

Being flexible comes into play here, too. A PI can allow people to leave crowded or loud places (such as symposium receptions or labs when noisy equipment is being used) or wear noise-canceling headphones, so that they're not be pushed to the breaking point.

Some of this comes down to trust. If an employee leaves a symposium early or wears headphones all day, you might be inclined to think they’re slacking or they don’t really care. But it's better to assume the person is simply caring for their own sensory needs.

Something that autistic people often do that can make nonautistic people uncomfortable is stimming, repetitive movements such as hand flapping or jiggling a leg. Stimming can help autistic people concentrate and get sensory overload under control to prevent meltdown. Asking an autistic person to stop stimming serves no real purpose other than making a nonautistic person feel less awkward. Not a worthwhile trade-off.

The Autism Self Advocacy Network has guidelines for planning events inclusive to autistic people. One recommendation is to give as much information as possible ahead of time, because switching gears and reacting to surprises can be especially hard for autistic people. Giving a schedule or agenda ahead of time for a meeting, so that everyone has time to think about and prepare what will be required of them, is a good practice. Unscheduled check-ins may not be as productive.

If, for example, you want to have an interactive lab meeting, like Elise described above, make sure everyone knows well in advance. Springing a roundtable discussion on the group could be a real trouble spot for autistic people who need more time to plan. And the truth is that surprises like that annoy everyone!

Adjustments for depression and anxiety: growth-minded feedback, encouragement and stress reduction

Depression is a little different, because depression can be made better or worse by the work environment. A poor work environment can, for example, make it significantly harder for an autistic person to do their job, but it is not necessarily making them more autistic. However, the work environment can make depression better or worse. Also, the episodic nature of depression means that a workplace can not only exacerbate depression but can actually trigger it in someone predisposed to it or in remission.

So, PIs need to keep in mind these two layers: how to manage people who are depressed and how to manage people so that they do not become depressed.

Studies show that depression is incredibly common among graduate students. This study found that 51% of Ph.D. students had at least two symptoms of depression, while 32% had at least four symptoms. Given these numbers, it is almost a guarantee that you have someone in your lab with this condition, if not multiple people.

Because those stats are significantly higher than they are in the general population, even when the authors controlled for many variables, it raises the possibility that grad school can cause depression. Anyone who went to grad school probably knows that! This is a huge crisis in academia that I can’t cover fully here. But I can address a piece of it.

While there is not a lot of summarized information about the best way to work with an employee with depression, a quick PubMed search reveals many studies showing that leadership style and working environment have a powerful  influence over employees' well-being, depression included. This can be a really good thing, because it means you, the PI, have the power to help make people’s mental health better!

Across studies, a few things have been shown to protect against employee depression:

• Being allowed to use skills their skills and learn new ones.
• Being allowed to make decisions about their work (such as how to carry things out and timing) and being included in other decision making.
• Receiving support from their boss and colleagues, such as validation and recognition.
• Having a boss with an inspirational leadership style.
• Natural lighting.

 These have been shown to correlate with depression in employees:

• Not being able to use or learn skills.
• ​Not being allowed to make decisions or participate in decisions about their work.
• Not receiving support, validation or recognition.
• Physical stresses, such as excessive noise, vibrations or uncomfortable temperatures.
• Stress.
• Psychological demands, including lack of sleep.
• Lack of certainly and job stability.
• Having a boss with a laissez-faire, uninvolved leadership style.

The Harvard Business Review earlier this year published a very well-researched article about managing employees with depression. The authors mention helping an employee simplify demands, allowing a flexible schedule, and focusing on positive outcomes.

“People who are depressed can be highly self-critical," the authors wrote. "Rather than highlighting failures, focus on supporting and celebrating moments of achievement.” This could be as simple as thanking a worker for getting something done on time.

Also, the HBR article states, “Motivation in depressed employees plummets in the face of threats and punishment. Research suggests that explaining the positive necessity of assignments as a motivation tool is far more effective than sharing the detrimental costs of an unfinished project.” For example, if a student has been sitting on a paper, telling them how great it'll be for their career would work better than telling them about the consequences of not getting it done.

Other things to consider, described in this article in Ellevate by Lesley Vos, are trying to make your employees comfortable, optimizing natural light (often a big problem in labs) and helping with organization.

Reducing stress is essential in conditions like depression, where someone is struggling to get through each day. "One thing a leader should understand about depressed employees: If they continue working full time, it doesn't mean it comes naturally for them. Each and every task seems challenging, and they go to great lengths to complete it,” Vos wrote. 

One thing that almost every student I talked to brought up (but is less clear in the literature) is the growth mindset. Growth mindset refers to the idea that people can grow and learn and become better at tasks and skills, rather than the fixed mindset, the thinking that someone is inherently good or bad at something. This doesn't mean a PI can't be critical; it means they should provide criticism that points toward making things better instead of just pointing out what is wrong.

Depression can lead to feelings of hopelessness, worthlessness and defeat, so it is essential for a manager to provide feedback that is useful and encourages growth rather than feedback about who the student is as a person

• Helpful: “Cell line X would have been a more informative control here than line Y. Do you see why? It’s helpful to sketch out the figure first, and then you can see which controls you need.”
• Unhelpful: "This control is wrong. You’re not thoughtful enough about your experiments."

When Ph.D. student Lindsay was dealing with depression and severe anxiety, her PI would say fixed-mindset things in their meetings and give feedback without clear plans of action, such as:

• “You work like a technician instead of a grad student.”
• “You act like you’re paralyzed.”
• “You’re just not producing data.”

When Lindsay asked for any specific guidance on what she should do to be better, the PI had no suggestions. This left Lindsay not only overwhelmed by her work but also emotionally crushed by a boss who seemed to find her flatly incompetent with no room for growth.

Lindsay recalled spending longer and longer hours in the lab trying to produce something to satisfy her boss while neglecting her personal life. Her depression worsened, which affected her ability to concentrate, to be creative, to think deeply, and to put her soul and knowledge into her work. Lindsay said the experience obliterated her motivation for a career in science.

Importantly, Lindsay told me, she wanted feedback. She wanted to learn, improve and become a better scientist. Her depression did not make her shy away from feedback in general, and she did not want a bunch of platitudes. It was the type and style of criticism that was hurtful, not criticism in general.

She said she could have used feedback on prioritizing her experiments and goals, breaking up tasks, and designing experiments. She said she could have used a little recognition for the effort she was putting in. Instead of saying “You work like a technician,” her PI could have provided some info about what to focus on to improve Lindsay’s research, as well as her state of mind.

In addition, Lindsay said her PI could have used her role-model position to encourage family time, not staying too late and getting good sleep. These sentiments, she said, would have made her feel valued as a human and would have allowed her to take time she needed to manage her depression and come back to lab with more motivation.

Instead, the PI encouraged the exact conditions that have been shown to worsen depression: avoiding a social life, skimping on sleep, working hard with no recognition or validation for her effort, constantly increasing stress, not growing and learning new scientific skills, and the feeling that nothing she did was good enough no matter how she tried.

Lindsay did graduate but has lost her passion for science and looks back on her grad school years with sadness and anger. She even said that if she sees people now who look similar to her former PI she starts to panic. This outcome is, I think, one we all want to avoid.

While no one is going to be able to magically cure someone’s depression by being nice, actions and words matter.