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Beyond the bench: A conversation with Matthew Lerner

Expert

Matthew Lerner

Associate professor, Stony Brook University

Under normal circumstances, Matthew Lerner’s day is full of meetings with graduate students, postdoctoral researchers, clinicians and research participants. His work focuses on how autistic people navigate relationships and what factors can facilitate or impede meaningful connections.

Since the pandemic began, his days have taken on a new dimension: They’re still full of meetings, but now Lerner and his team are part of a massive global experiment on maintaining social connection while working remotely.

Some of their efforts, such as in-person mentorship programs for autistic teenagers, just aren’t possible with social distancing — and likely won’t be in the near future. But Lerner is optimistic that the autistic people who work with his team can teach researchers some lessons about forging social connection in a world that isn’t set up for it.

Spectrum: What is the big question that drives your research?

Matthew Lerner: For most people, being able to connect to others, make friends and develop meaningful relationships happens fairly effortlessly. But for some people, especially those on the spectrum, it can be really hard. So the thing that we want to understand here is, what are the factors that make that happen, that can either facilitate or get in the way? And then how do we use those insights to improve interventions and approaches that are both effective and respectful of the preferences of the population? And then finally, how do we get those things out into the world?

S: Whose work do you admire? And whom would you love to work with one day?

ML: Oh man, there are so many people whose work I admire in this field. In particular, Connie Kasari has long been a hero of mine. I feel like she’s always been about 10 steps ahead of everybody else who’s doing any kind of intervention work, and she was incorporating insights of autistic individuals into research on intervention long before most people thought of doing that. I’ve long hoped to work with her.

S: How much sleep do you usually get?

ML: Not enough. I would say if I get six hours, it’s a good day.

S: What does your day look like these days, during the pandemic?

ML: My wife actually works in the pediatric emergency room, so she’s busy. And so I’m basically trying to figure out how to get my kids some structure for the day and almost every day doing some combination of schooling and play, hopefully getting a little bit of fresh air every once in a while. And, of course, I have meetings every day with my students, postdocs, staff and colleagues so we can keep the lab going now; most of my day involves balancing this with childcare and cooking meals. Also, I have played saxophone since I was a child, and used to play in many different types of bands (jazz, ska, funk, experimental, rock, klezmer); while I don’t really have time to be in any bands right now, I hope to do so again one day, and for now I enjoy getting to play solo a bit whenever I can.

As somebody who studies social connection and social interaction, I find this sort of massive worldwide experiment in social distancing to be worrying and also interesting. Worrying just because we are a eusocial species. We do still need connection. So how we’re going to deal with being isolated from one another for an indeterminate amount of time is going to be hard. We’re already seeing all of these different ways people are desperately trying to innovate these connections, figuring out what means of connection works for them.

One thing it’s definitely doing is causing us to be more explicit and intentional about our social interactions. On the one hand, it may cause us to be more cautious. It may cause us to pause and maybe even be more empathic, to really think carefully about “Who am I talking to?” and “What are their needs?” and “How can I adjust; how can I calibrate to them?”

In our lab, we try really hard to integrate insights from autistic individuals. I’ve talked to a few colleagues of mine who are on the spectrum about how things are going during the pandemic. A few people have said, “I’ve been waiting for this for a long time, and I feel like I have a lot of insights to share with the neurotypical world about how to manage a more socially distant, intentional existence.” So, we’re trying to learn from them.

One thing we’ve learned from many of our studies is that because of some of the factors that can impact the ability to have fluid social-interactive behavior, autistic individuals are more practiced at being intentional. This is something that we really might be able to learn from our autistic friends and colleagues: how to better manage in a world that looks like this.

Matt Lerner reading to his son in the backyard of his house.

Double duty: The bulk of Lerner’s writing happens during his ‘second shift,’ which begins after he and his wife put their kids to bed.

S: How do you stay productive?

ML: I try to find time where I can, and I try to preserve time as well. The notion of protecting one’s time is really so invaluable and relevant here. There’s a great book by the psychologist Paul Silvia called “How to Write a Lot.” It’s a slim little volume, and it’s one of the best guidebooks for productive writing. Also, Andres De Los Reyes of the University of Maryland has a new book called “The Early Career Researcher’s Toolbox,” which gives guidance on productivity and finding your voice in research and how you’re to do all this — the mechanics of all of it.

Both Paul and Andy have similar advice, which is finding some time — even if it’s 10 or 20 or 30 minutes — on a regular basis to be your writing time and making sure that it is unencumbered. And also realizing that writing doesn’t necessarily mean literally putting pen to paper or fingers to keyboard. Writing can mean just taking time to think about your science and the questions you’re asking, or taking time to read related articles or formulate your thoughts. So when you approach it that way, when you’re creating those little 10-minute windows, you can forgive yourself if at the end of it if you haven’t written 500 words.

I usually write at home at night, during my ‘second shift’ (i.e., after my kids are in bed). Sometimes I’ll do writing with my graduate students when we meet. Or we’ll sort of sit down and be like, “Alright, let’s pick apart this arc. Let’s figure out how we’re going to make this case as clearly as we can.”

And then in terms of background stuff, I usually toggle between, like, a Pandora or some kind of background music station without words. Or sometimes, and Andy De Los Reyes actually talks about this in his book, there are some movies or TV shows that I just like a lot and know so well that I can have them on in the background and it’s almost like they don’t have words.

S: What do you put on the TV?

ML: “Star Trek: The Next Generation” is my current one. “30 Rock” and “How I Met Your Mother” are great ones. Many of the Marvel movies are good ones for me, as well as Star Wars movies.

I used to beat myself up about this because I felt like I have all this stuff to get done, but I need to decompress. Just listening to ambient music is not enough to really decompress, but there’s just not enough time, and then I realized, hey there are some things that I enjoy just fine, and yes they have words but I can still get that benefit, that relaxation, and also that dopamine burst of something I really enjoy, and pair it with my writing.

S: What are you reading right now?

ML: I read The Atlantic magazine a lot, pretty much everything that comes out. I started reading “The Magic Treehouse” series with my son. It’s sort of like the one-generation-younger Harry Potter, similar stories for slightly younger kids. It brings me so much joy to read with him — we look forward to it every night.

As for academic journals, mostly I’m reading what my grad students bring me, or the articles I review as a peer reviewer or editorial board member.

S: Are you active on social media?

ML: I am on Facebook and MeWe, but I’m not on Twitter. I’m trying to get more active on MeWe because I’m trying to figure out if it’s possible to get off of Facebook. MeWe is one of these new platforms that’s much more transparent about what they do with your data. I’m trying hard to believe that Twitter doesn’t exist, but I don’t know how long it’s going to last. Right now, paradoxically, social media is the main way that many of us are connecting with one another.

S: What do you eat or drink while you’re working?

ML: Coffee. A lot of coffee.

S: How many unread emails are in your inbox right now?

ML: 70.

S: That’s not too bad.

ML: —70 threads.

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THIS NOTICE DESCRIBES HOW MEDICAL INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED AND HOW YOU CAN GET ACCESS TO THIS INFORMATION. PLEASE REVIEW IT CAREFULLY.

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A. WE MUST PROTECT YOUR PROTECTED HEALTH INFORMATION

We are required to abide by the terms of this Notice of Privacy Practices. We may change the terms of our Notice of Privacy Practices at any time. The new Notice of Privacy Practices will be effective for all protected health information that we maintain at that time. Upon your request, we will provide you with any revised Notice of Privacy Practices. You may request a revised version by calling or writing our Privacy Officer and requesting that a revised copy be sent to you in the mail or asking for one at the time of your next appointment.

B. USE AND DISCLOSURES OF PROTECTED HEALTH INFORMATION

Your protected health information may be used and disclosed by our office staff others outside of our office who are involved in your care and treatment for the purpose of providing health care services to you.
Your protected health information may also be used and disclosed to pay your health care bills and to support the operation of our practice.
Following are examples of the types of uses and disclosures of your protected health information that we are permitted to make. These examples are not meant to be exhaustive, but to describe the types of uses and disclosures that may be made by our office.

1. Treatment: We will use and disclose your protected health information to provide, coordinate, or manage your health care and any related services. This includes the coordination or management of your health care with another provider.
For example, we would disclose your protected health information, as necessary, to a home health agency that provides care to you. We will also disclose protected health information to other healthcare providers who may be treating you.
For example, your protected health information may be provided to a physician to whom you have been referred to ensure that the physician has the necessary information to diagnose or treat you. In addition, we may disclose your protected health information from time-to-time to other health care providers (e.g., a specialist or laboratory) who become involved in your care by providing assistance with your health care diagnosis or treatment to us.
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We may share your protected health information with third party "business associates" that perform various activities (for example, billing or transcription services) for our practice. Whenever an arrangement between our practice and a business associate involves the use or disclosure of your protected health information, we will have a written contract that contains terms that will protect the privacy of your protected health information.
We may use and / or disclose protected health information to contact you to, remind you about an appointment you have for treatment or medical care.
We may use or disclose your protected health information, as necessary, to provide you with information about treatment alternatives or other health--related benefits and services that may be of interest to you. You may contact our Privacy Officer to request that these materials not be sent to you.
4. Other Permitted and Required Uses and Disclosures That May Be Made Without Your Authorization or Opportunity to Agree and Object:
We may use or disclose your protected health information in the following situations without your authorization or providing you the opportunity to agree or object. These situations include:
(i) Required by Law: We may use or disclose your protected health information to the extent that the use or disclosure is required by law. The use or disclosure will be made in compliance with the law and will be limited d to the relevant requirements of the law. You will be notified, if required by law, of any such uses or disclosures.

(ii) Public Health: We may disclose your protected health information for public health activities and purposes to a public health authority that is permitted by law to collect or receive the information. For example, a disclosure may be made for the purpose of preventing or controlling disease, injury or disability.

(iii) Communicable Diseases: We may disclose your protected health information, if authorized by law, to a person who may have been exposed to a communicable disease or may otherwise be at risk of contracting or spreading the disease or condition.

(iv) Health Oversight: We may disclose protected health information to a health oversight agency for activities authorized by law, such as audits, investigations, and inspections. Oversight agencies seeking this information include government agencies t-rat oversee the health care system, government benefit programs, other government regulatory programs and civil rights laws.

(v) Abuse or Neglect: We may disclose your protected health information to a public health authority that is authorized by law to receive reports of child abuse or neglect. In addition, we may disclose your protected health information if we believe that you have been a victim of abuse, neglect or domestic violence to the governmental entity or agency authorized to receive such information. In this case, the disclosure will be made consistent with the requirements of applicable federal and state laws.

(vi) Legal Proceedings: We may disclose protected health information in the course of any judicial or administrative proceeding, in response to an order of a court or administrative tribunal (to the extent such disclosure is expressly authorized), or in certain conditions in response to a subpoena, discovery request or other lawful process.

(vii) Law Enforcement: We may also disclose protected health information, so long as applicable legal requirements are met, for law enforcement purposes, these law enforcement purposes include (1) legal processes and otherwise required by law, (2) limited information requests for identification and location purposes, (3) pertaining to victims of a crime, (4) suspicion that death has occurred as a result of criminal conduct, (5) in the event that a crime occurs on the premises of our practice, and (6) medical emergency (not on our premises) and it is likely that a crime has occurred.

(viii) Research: We may disclose your protected health information to researchers when their research has been approved by an institutional review board that has reviewed the research proposal and established protocols to ensure the privacy of your protected health information.

(ix) Criminal Activity: Consistent with applicable federal and state laws, we may disclose your protected health information, if we believe that the use or disclosure is necessary to prevent or lessen a serious and imminent threat to the health or safety of a person or the public. We may also disclose protected health information if it is necessary for law enforcement authorities to identify or apprehend an individual.

(x) Military Activity and National Security: When the appropriate conditions apply, we may use or disclose protected health information of individuals who are Armed Forces personnel (1) for activities deemed necessary by appropriate military command authorities; (2) for the purpose of a determination by the Department of Veterans Affairs of your eligibility for benefits, or (3) to foreign military authority if you are a member of that foreign military services. We may also disclose your protected health information to authorized federal officials for conducting national security and intelligence activities, including for the provision of protective services to the President or others legally authorized.

(xi) Workers' Compensation: We may disclose your protected health information as authorized to comply with workers' compensation laws and other similar legally established programs.
5. Other Permitted and Required Uses of Disclosures That Require Providing You the Opportunity to Agree or Object
We may use and disclose your protected health information in the following instances. You have the opportunity to agree or object to the use or disclosure of all or part of your protected health information. If you are not present or able to agree or object to the use or disclosure of the protected health information, then we may, using professional judgment, determine whether the disclosure is in your best interest.

Others Involved in Your Health Care or Payment for our Care:

Unless you object, we may disclose to a member of your family, a relative, a close friend or any other person you identify, your protected health information that directly relates to that person's involvement in your health care. If you are unable to agree or object to such a disclosure, we may disclose such information as necessary if we determine that it is in your best interest based on our professional judgment. We may use or disclose protected health information to notify or assist in notifying a family member, personal representative or any other person that is responsible for your care of your location, general condition or death. Finally, we may use or disclose your protected health information to an authorized public or private entity to assist in disaster relief efforts and to coordinate uses and disclosures to family or other individuals involved in your health care.
6. Uses and Disclosures of Protected Health Information Based upon Your Written Authorization Other uses and disclosures of your protected health information will be made only with your written authorization, unless otherwise permitted or required by law as described below. You may revoke this authorization in writing at any time. If you revoke your authorization, we will no longer use or disclose your protected health information for the reasons covered by your written authorization. Please understand that we are unable to take back any disclosures already made with your authorization.
C. YOUR RIGHTS
Following is a statement of your rights with respect to your protected health information and a brief description of how you may exercise these rights
1. You have the right to inspect and copy your protected health information
This means you may inspect and obtain a copy of protected health information about you for so long as we maintain the protected health information. You may obtain your medical record that contains medical and billing records and any other records that we use for making decisions about you. As permitted by federal or state law, we may charge you a reasonable copy fee for a copy of your records.
2. You have the right to request a restriction of your protected health information
This means you may ask us not to use or disclose any part of your protected health information for the purposes of treatment, payment or health care operations. You may also request that any part of your protected health information not be disclosed to family members or friends who may be involved in your care or for notification purposes as described in this Notice of Privacy Practices. Your request must state the specific restriction requested and to whom you want the restriction to apply.

We are not required to agree to a restriction that you may request. If we agree to the requested restriction, we may not use or disclose your protected health information in violation of that restriction unless it is needed to provide emergency treatment. With this in mind, please discuss any restriction you wish to request with your health provider.

You may request a restriction by making your request in writing to our Privacy Officer. In your request, you must tell us (1) what information you want to limit; (2) whether you want to limit our use, disclosure, or both; and (3) to whom you want the limits to apply, for example, disclosures to your spouse.
3. You have the right to request to receive confidential communications from us by alternative means or at an alternative location
We will accommodate reasonable requests. We may also condition this accommodation by asking you for information as to how payment will be handled or specification of an alternative address or other method of contact. We will not request an explanation from you as to the basis for the request. Please make this request in writing to our Privacy Officer.
4. Your may have right to amend your protected health information
This means you may request an amendment of protected health information about you in a designated record set for so long as we maintain this information. In certain cases, we may deny your request for an amendment. If we deny your request for amendment, you have the right to file a statement of disagreement with us and we may prepare a rebuttal to your statement and will provide you with a copy of any such rebuttal. Please contact our Privacy Officer if you have questions about amending your medical record.
5. You have the right to receive an accounting of certain disclosures we have made, if any, of your protected health information This right applies to disclosures for purposes other than treatment, payment or health care operations as described in this Notice of Privacy Practices. It excludes disclosures we may have made to you if you authorized us to make the disclosure, to family members or friends involved in your care, or for notification purposes, for national security or intelligence, to law enforcement (as provided in the privacy rule) or correctional facilities, as part of a limited data set disclosure. The right to receive this information is subject to certain exceptions, restrictions and limitations.
6. You have the right to obtain a paper copy of this notice from us
upon request, even if you have agreed to accept this notice electronically.
D. COMPLAINTS
You may complain to us or to the Secretary of Health and Human Services if you believe your privacy rights have been violated by us. You may file a complaint with us by notifying our Privacy Officer of your complaint. We will not retaliate against you for filing a complaint

You may contact our Privacy Officer at (704) 824-7800 for further information about the complaint process.

This notice was published and becomes effective on August l, 2011.