MNLEND graduates celebrate

May 16, 2023

When the Minnesota Leadership Education in Neurodevelopmental and Related Disorders (MNLEND) graduates receive their certificates in a ceremony on May 25, it will mark completion of the 15th cohort under the direction of the Institute on Community Integration. It also marks a significant milestone toward the national LEND program’s goal of providing long-term, graduate-level interdisciplinary training that improves policies and services for people with developmental disabilities.

“Comprehensive interdisciplinary programs that allow fellows to learn and engage with one another are rare, and rarer still are programs that engage community members as co-learners,” said Amy Hewitt, director of the Institute. “This commitment ensures that people with lived disability experience and those from diverse racial, ethnic, and linguistic backgrounds are full members of the learning community.”

This year, 28 fellows have earned full MNLEND certificates, along with seven intermediate trainees who joined the program for a more limited, focused experience. They come from University of Minnesota academic disciplines, including Public Health Administration, Law, Social Work, Psychology, Nursing, Occupational Therapy, Pediatric Dentistry, and many more; or are community members in disability-related professions, self-advocates, or family advocates.

Minnesota Governor Tim Walz congratulated the fellows in a video message that will be shared at the ceremony.

“You learned about the latest research and gained practical experience through hands-on training with individuals and families,” he said. “This combination of knowledge and experience will serve you well as you take on leadership roles in this field. Remember that leadership isn’t dependent on your title or position. Leadership is your ability to set a vision, develop goals, and inspire others to join you.”

As they completed their experience this spring, fellows shared details about their individual projects that are required components of MNLEND, along with reflections on the overall learning experience.

“My year with MNLEND has been eye opening and deeply meaningful,” said Der Thao (MNLEND 2022-23), who during her fellowship worked as part of an evaluation team for a manuscript on behavioral parent coaching for families of children with attention deficit/hyperactivity disorder. “I have met so many incredible people and have had the opportunity to learn more about myself and have grown as a leader in the disability community and in my own life.”

Rebecca Dosch Brown, ICI’s director of interdisciplinary education, said this year’s cohort built deep relationships as they shared knowledge from their personal and professional experiences with disability.

“They formed an amazingly supportive community, encouraging and advocating for each other as they learned,” Dosch Brown said. “Minnesota just gained a powerful new group of disability leaders who have the skills to collaborate not only across their disciplines but also across varied cultures and life experiences. All of us on the leadership team are extremely proud of them.”

In addition to Dosch Brown, MNLEND’s leadership team includes ICI Director Amy Hewitt; Andy Barnes, assistant professor of pediatrics at the University of Minnesota Medical School; and ICI’s Jennifer Hall-Lande and Ajibiké (BiKé) Ojomo.

“MNLEND offers projects that span a range of activities, from policy making and community outreach to clinical and research-based work,” Dosch Brown said. “Small teams can then learn from each other, the faculty, and community members in interdisciplinary settings. We coach them through their projects, making sure those most affected are included, consulted, and honored in the work the project does.”

This year’s fellows completed several education initiatives for the Minnesota Learn the Signs Act Early Project.

“I worked to educate providers on the CDC resources for early identification of developmental delays and autism through a presentation,” said Annabelle Hearne (MNLEND 2022-23). The entire MNLEND experience helped her expand her knowledge of what it means to live with a neurodevelopmental disability, she said. “Ultimately, I have learned the importance of not setting limits on individuals with disabilities.”

Other fellows worked on projects using telehealth to support early intervention for families of children with sensory or other neurodevelopmental issues.

Jeannie Clark (MNLEND 2022-23) helped test the design of a study involving young children with Down syndrome for her project.

“I have a much greater awareness of diverse views, particularly those surrounding neurodiversity,” Clark said of the fellowship.

Fellows also helped create policy research briefs, including one for the Institute based on data from its long-running Residential Information Systems Project (RISP), a longitudinal study of long-term supports and services for people with intellectual and developmental disabilities.

Applications for the 2024-25 cohort will open Oct. 15. Questions about the program can be directed to Ojomo at bojomo@umn.edu.

Autistic, not sorry

March 22, 2023

Isabelle Morris (left) assisting a writer with developmental disabilities.

You’ll probably learn something about dogs when you meet Isabelle Morris (pictured at left), and after letting you know she has all of the AKC breeds memorized alphabetically, she’ll joke that if you couldn’t already tell, her other special interest is autism.

But it’s not just uncanny canine knowledge and a dry sense of humor that set Morris apart. She’s among a growing group of autistic researchers using their lived experience to shape the future of autism research.

“I only have one experience of autism, and my adviser and others around me have the good sense to not challenge the person with autism on their experience, but to encourage me to bring in other people who will make my research so much better, versus conducting it in a vacuum,” Morris said. “It’s not only better-quality research, but community building.”

Morris is a second-year doctoral student at the University’s Institute of Child Development who is also completing a MNLEND fellowship at the Institute on Community Integration. The Minnesota Leadership Education in Neurodevelopmental and Related Disabilities fellowship is a leadership training experience that spans more than 16 disciplines across the University and includes a wide cross section of community members from outside the University.

Her participatory research project is called RADAR (Research on Autism Driven by Autistic Researchers) and her small group of collaborators are exploring perceptions about and experiences with stimming, the repetitive self-stimulating behaviors sometimes used by people with autism to manage emotions. They recently completed a survey of 150 U.S. adults with autism, asking them about masking (methods used to hide stimming from public view), about the positive and negative ways stimming affects them, and about how they use stimming to communicate with other autistic people and express their identities. She plans to conduct 20 follow-up interviews, analyze both sets of findings, and use them to create a better understanding of the way autistic people communicate.

“Historically, stimming was deemed as purposeless behavior,” said Morris, who did her undergraduate work at Stanford University and spent two years at the Stanford Neurodiversity Project. “Today there’s a recognition that it helps in self-regulation, but this social communication aspect is new. Rather than looking at it as a comparative deficit, it acknowledges an autistic’s way of being in the world.”

In the survey, nearly 3 in 4 respondents said that when they see other neurodivergent people stimming, they can tell what emotions the person is feeling – quite remarkable for a population that has historically been thought of as not being capable of reading emotions, Morris said.

“Who lacks theory of mind, now?” she quips, often referring to herself as “unapologetically autistic.”

By deeply engaging autistic people in research, we learn much more, she said. “We often joke that this is the autistic social club where we talk about research.”

To help hone her skills in working with people with different types of disabilities at multiple levels of a research project, she also spent time through her MNLEND fellowship working with Cow Tipping Press , a Minneapolis organization that teaches inclusive writing classes for adults with developmental disabilities. Her class will host readings and a book launch showcasing their work at 11 a.m. on April 4 at Lake Monster Brewing in St. Paul. Information on other spring book events can be found here .

Leading the course was challenging for Morris, stretching her executive functioning capacity, but it also helped her confidence in working with people with disabilities.

“I really want to include people with intellectual disability and higher support needs in my research,” she said. “This experience gave me the opportunity to presume competence and provide support. It also gave me ideas on how to integrate people with ID into my research in a meaningful way. LEND has been a huge complement to my academic training. Now I have a little more experience and an ability to bring that into my research with collaborators. It’s all interconnected.”

Using telemedicine to help families when they need it most

November 16, 2022

Jessica and her husband Andrew wondered if their son Elias might be autistic.

They also knew that early intervention, while his brain was still developing, was critical to providing him with the support he needed.

Trouble is, the wait list to see a specialist for the neurological disorder can be months and even a year or more long.

Fortunately, the Mendota Heights couple was referred to Bridging Barriers, a telemedicine study from the Institute on Community Integration and the University of Minnesota Medical School’s Department of Pediatrics – both part of the Masonic Institute for the Developing Brain.

In just four weeks, they had that critical diagnosis. Even better, they’re getting coaching on how to help their four-year-old son while they climb the wait list.

“Time is neurons,” says Jessica with an ever-watchful eye on her playful boy. “We can’t put our son’s developing brain on pause.”

Agrees Dr. Amy Esler, the study’s lead psychologist: “The brain, at this stage, is so malleable. Making sure kids learn to talk, for example, is much easier when they’re two or three than when they’re ten or 11.”

We’ve Had a Few Kids Start to Speak

The University of Minnesota is famous for its medical breakthroughs. But this is innovation in the delivery of that medicine.

The number of people diagnosed with autism grows. But, for various reasons, the number of providers does not.

It’s especially acute in Minnesota’s rural areas, where specialists of any kind can be hours away.

Telemedicine not only promises to serve more patients, more easily but, at least in one sense, also more effectively.

Video calls invite care professionals into the home where they can see their patients in a more natural – and telling – environment.

Says Dr. Adele Dimian, one of the study’s co-principal investigators and coaches: “What makes my day is seeing a family having fun together reaching a goal.”

It’s Just the Way the Universe Works

Nobody knows autism quite like Dr. Jessica Simacek, the study’s principal investigator.

After a career spent helping kids with special needs, her own son was diagnosed with autism.

Dr. Simacek experienced firsthand what it’s like to be on wait list after wait list, first for a diagnosis, then for therapy and more therapy, all while your child – and you – need help now.

And even though she’s an expert on child development, she realized that she needed help, too, even if it’s just a reassuring voice from time to time.

Dr. Simacek says: “Our goal is no families waiting.”

We Call Him Our Crossfit Baby

Jessica and Andrew had a reason to be extra vigilant with Elias’s development.

There was a complication with his delivery – he went without oxygen for several minutes.

Jessica first noticed something different at just three months when Elias pushed himself up on his hands and knees in a determined effort to crawl.

By age 1, he was not only walking with confidence but running and even climbing.

Still, at regular check-ups, Elias’s tests were normal until about three, when Jessica and Andrew noticed delays, especially in his communication skills and ability to regulate emotions.

Now, with the help of the study’s early intervention, they’re confident that they’re doing everything they can for him.

Alumni Update: Milena Bates

August 17, 2022

Milena Bates (MNLEND 2021-22), co-founder of the Minnesota Autistic Alliance, is recruiting self-advocates for new projects supported by a grant from the Minnesota Department of Human Services.

Cultivate, a 10-hour online self-advocacy course covering how to identify needs, navigate barriers, and understand intersectionality (among other topics), begins August 23. It is designed for and by neurodivergent self-advocates. Lattice is a partnering program that will connect a team of three partners best suited to the support needs of a self-advocate. The group also is recruiting writers for an accessible, digital resource database.

Bates and Jules Edwards (MNLEND 2020-21) are leading the Alliance. The group became a non-profit organization last year after beginning as a social media group in 2018.

Edwards is also a gardener, and the course and partnering program names are meant to evoke a sense of nurturing and supported growth.

“Our goal with Lattice is to create a new version of the support people have been getting in our Facebook group. It’s a little like mentoring, but a more interwoven support from multiple sources, rather than the power dynamic of a single mentor,” Bates said. “With the database, we’re trying to push the limits of accessibility, and that’s a big challenge, we’re finding.”

As a MNLEND fellow, Bates helped conduct a literature review that was part of the Institute’s contribution to a multi-year, multi-university curriculum for medical professionals working with patients with disabilities. She’s now advising a separate team that is developing a conference for medical professionals on a similar topic to be held early next year.

“All of this work is about creating more accessibility and more understanding around neurodivergence,” Bates said. “I would love more professionals and others to know about the social model of disability.” The model presents disability not as a problem to be solved for an individual but as a societal challenge to remove barriers to full participation.

Contact admin@mnautisticalliance.org for more information about all three programs.

Autism, age, and race

March 16, 2022

Newly published research by authors from the University of Minnesota found racial disparities in identifying autism in young children, and overall prevalence rates point to broad implications for all children with autism as they grow into adulthood.

Amy Esler and Jeanette Sample of the University’s Department of Pediatrics and Jennifer Hall-Lande of the Institute on Community Integration were among authors of the paper, published in February in the Journal of Autism and Developmental Disorders.

Researchers noted differences in the ages of identification and recorded symptoms found among children who were only evaluated in special education school settings compared with those who had other diagnostic evaluations.

“Our study found that Black, Asian, and Hispanic children were more likely than white children to have been identified with autism only in a school setting, which suggests they may have less access to specialized autism evaluations in clinic settings,” said Esler. “Children who only accessed school evaluations were identified with autism more than a year later than those who had access to a clinic evaluation. The study demonstrates the critical importance of early, accurate identification, and how racial and other disparities continue to affect how and when children are identified as needing services.”

As World Autism Month approaches, it’s important to highlight these disparities and pose new research questions that will address the challenges of autism across the lifespan, Hall-Lande said.

“We need to explore conversations in diverse communities about what’s changing in the data around ages at identification,” Hall-Lande said. “We know we’re doing better at identification by age 4, but we’re also identifying more children who are a little older, so that can alter the averages.”

The critical factor going forward, said Hall-Lande, is taking this understanding of the prevalence of autism and applying it to help people with autism now and as they transition to adolescence and adulthood.

“Given the most current prevalence estimates, it’s likely that if you walk into a typical third-grade class, there will be students identified with autism. Knowing this, we need to be doing a better job of identifying them early and planning for their futures.”

Sensory-friendly vaccine sites

February 1, 2022

Maren Christenson Hofer (MNLEND 2018–19) pictured at an earlier event with her autistic son, Simon. He was vaccinated against COVID-19.

Several of the Institute’s MNLEND program fellows—current and past—have played key roles in bringing sensory-friendly vaccine clinics to children and families in the Minneapolis-St. Paul area.

Fatima Molas (MNLEND 2016–17) and Maren Christenson Hofer (MNLEND 2018–19; pictured at an earlier event with her autistic son, Simon) of the Multicultural Autism Action Network, and Ellie Wilson (MNLEND 2010–11), executive director of the Autism Society of Minnesota, collaborated with several other partners to create COVID-19 vaccination clinics with quiet rooms, music therapy, a drive-thru option, and distraction techniques.

“At most vaccine events, the goal is getting as many shots in arms as possible,” said Hofer. “Our primary goal was creating the best possible experience and to bring some compassion and understanding to children and families, who may have experienced past trauma or have ongoing anxiety in these settings.”

Raniya Yiman and Brittany Miller, current MNLEND fellows, and Alicia Zhang, an ICI graduate assistant, served as volunteer staff at the clinics.

“It was very meaningful work,” Yiman said. “I was really happy to be able to volunteer in this way and talk to the families.”

Hennepin County Healthcare and Spero Academy partnered with the organizations on the most recent clinics in December and January at Spero in northeast Minneapolis, which drew more than 300 participants. The autism organizations held two smaller clinics last summer in St. Paul.

“We believe everyone deserves access to healthcare,” Hofer said. “Offering this clinic is one way we can make sure all members of our community can stay safe during the pandemic. We offer a little more patience, flexibility, and an extra dose of compassion for anyone who might need it.”

Hofer said families expressed gratitude at the events.

“We had a really nice response. It was a tough day emotionally for everyone, but to see the relief and gratitude of families who had gone to other events and weren’t able to complete their vaccines, to see them feeling supported and not judged for needing some extra help was really nice,” she said.

CEHD Research Day features ICI autism work

March 19, 2021

ICI's Libby Hallas and Jennifer Hall-Lande at a previous CEHD Research Day. — ICI’s Libby Hallas (left) and Jennifer Hall-Lande (right) at a previous CEHD Research Day.

The Institute’s work in autism prevalence and the critical age at diagnosis are highlighted at this month’s College of Education and Human Development Research Day.

The virtual event features short videos that will accompany each poster. Visitors are encouraged to leave feedback and questions for presenters through the end of March. On March 23, a live panel will discuss the intersection of social justice and research. There will also be a Three-Minute Thesis competition and a presentation of CEHD’s World Challenge 2020 winners.

Libby Hallas, an ICI project coordinator who manages the Minnesota-Autism and Developmental Disability Monitoring (MN-ADDM) Network Project, presents two posters. Hallas is pictured at left during a previous (in-person) CEHD Research Day.

The first covers autism spectrum disorder prevalence data reported to the Centers for Disease Control and Prevention, noting differences across racial and ethnic population groups that require further study.

“Continuing to expand our surveillance area across racial and ethnic groups will give us more precise data,” Hallas said. “There is a need to further understand the possible reasons for disparities, including the issue of access to diagnostic services.”

The second poster notes disparities in children’s ages when they are first identified as being on the autism spectrum. Children who are only identified through services at school start to receive intervention far later than those seen in both school and clinical settings. Racial disparities were also noted.

“This was a network-wide project that our Minnesota team led, and it highlights the importance of early intervention. If the first comprehensive evaluation doesn’t happen until a child is school-aged, an important window may have been missed,” Hallas said. “We’re looking forward to sharing this work, and to seeing what other researchers across the college are submitting.”

New support for tele-outreach

December 18, 2020

Jessica Simacek, director of the TeleOutreach Center and manager of ICI’s Telehealth Lab, working in her lab.

The Richard M. Schulze Family Foundation has awarded a $2 million, multi-year grant to the University of Minnesota Foundation to support tele-outreach services through the Masonic Institute for the Developing Brain. ICI, as a MIDB partner, will lead the creation of the MIDB TeleOutreach Center over the next three years, bringing together clinical pediatric providers and developmental specialists to reach underserved communities around the state with convenient and cost-effective services.

MIDB is an interdisciplinary center dedicated to supporting healthy brain development and intervening early to address mental health and neurodevelopmental challenges such as autism, learning disabilities, substance abuse disorders, and other neurocognitive disabilities.

“This forward-thinking gift provides a critical foundation for expanding intervention services throughout Minnesota for many years to come,” said ICI Director Amy Hewitt.

Tele-outreach refers to a broad set of training, technical assistance, and intervention services delivered electronically to children, families, and professionals in the field. The Center will be housed in the new MIDB facility, now under construction at 2025 East River Parkway, Minneapolis.

“We’re leveraging technology and innovation to increase our reach and serve more children with neurodevelopmental disorders and behavioral health needs statewide,” said Jessica Simacek, director of the TeleOutreach Center and manager of ICI’s Telehealth Lab. “We’re building sustainable pathways and resources so more children and families in different regions of the state can access very high-quality, interdisciplinary intervention.”

Using secure, remote video communication technology, leading specialists will provide assessment, intervention, and support for young people with mental health and neurodevelopmental disabilities. The Center will also conduct remote training and coaching for health, education, and human services professionals, as well as families. The technology will allow investigators to conduct innovative research, collaborate with each other, and host community forums for creating better outcomes for children, young people, and their families.

“It’s going to be a great, one-stop shop,” said Adele Dimian, an ICI research associate also working on the project. “It’s exciting to collaborate across different fields as the University broadens its work in the field of autism and other disorders.”

As children with disabilities and their families face additional challenges due to the pandemic, the new facility will help improve access to intervention, Simacek said.

“We’re going to now be able to scale up a lot of promising work to address those barriers,” she said.

Pinpointing autism’s reach

September 16, 2020

To better quantify the prevalence of autism across Minnesota, ICI investigators will tap into large statewide education and social services databases under a new grant from the U.S. Centers for Disease Control and Prevention (CDC).

Using secure data sets from the MinnLInK project at the University’s Center for Advanced Studies in Child Welfare (CASCW), investigators will explore statewide indicators of autism spectrum disorder and the use of ASD-related services in schools, public health, juvenile justice, and other settings. Their ultimate aim: To estimate accurate, statewide ASD prevalence rates, allowing intervention services to be directed where they are needed most. Improving service delivery to key populations will lower the average age of diagnosis, a critical factor in better life outcomes for people with ASD, investigators say.

The project, expected to be completed within the next year, builds on ICI’s longstanding prevalence work in the Twin Cities metro area through the Autism and Developmental Disabilities Monitoring (ADDM) Network. Also funded through the CDC, the ADDM Network monitors prevalence rates in select areas across the United States. ICI’s ongoing prevalence work, concentrated in parts of Hennepin, Ramsey, and Anoka counties, covers about one-third of the state’s population.

ICI’s work has also focused on disparities in prevalence among children with diverse cultural and racial backgrounds, but has been limited by small sample sizes collected through reviews of health and education records.

Having access to larger, statewide data through MinnLInK will help validate and expand that work. MinnLInK data collects information from state education, human services, and corrections departments, and includes information on children from birth to age 18.

“Communities want to understand their specific prevalence rates and to know what services children who are diagnosed with autism are accessing,” said ICI’s Jennifer Hall-Lande, co-principal investigator for the project. “This opens up a world of possibilities to better understand not only autism prevalence, but also the experiences of children, what services they are using, and where the disparities in diagnosis and treatment exist.”

Amy Esler, associate professor of pediatrics at the University, joins Hall-Lande as co-principal investigator. ICI Director Amy Hewitt, Adele Dimian, and Libby Hallas are also working on the project, among others.

In proposing the study, the team cited research estimating the total annual societal cost of autism is $268 billion in the United States, and that life-long support costs may be cut by up to two-thirds through early diagnosis and intervention.

“It would take years to get separate data agreements in place if we tried to approach school districts and other entities individually for this information,” Esler said. “With this project, we can access data in a confidential, efficient way that will help us identify geographic areas and diverse populations that need more services.”

Closing gaps: Autism’s health disparities

August 18, 2020

Responding to research documenting health disparities in the autism community, investigators at the College’s Institute on Community Integration have joined a national research network formed to improve the physical health and well-being of children and adults with autism.

The multidisciplinary team, called the Autism Intervention Research Network on Physical Health, is led by University of California, Los Angeles, under a grant from the Health Resources & Services Administration. It will create interventional studies and other research on autism as it intersects with overall healthcare access and quality, primary care utilization, physical activity, stress, sleep, substance abuse, sexual health, neurological issues, and genetics, among others. The project will also explore disparities in healthcare among women and people from underserved or vulnerable populations.

ICI is among 15 collaborating organizations and seven research nodes participating in the network. The Association of University Centers on Disabilities (AUCD) will serve as the data repository and will help manage the network. AUCD’s broad membership network will also serve as collaborators, and UCLA’s Alice Kuo, a professor of internal medicine and pediatrics, is the project director.

“We’re very excited to collaborate on this project with some of the key leaders in the field of autism research,” said Jennifer Hall-Lande, principal investigator on the project for ICI. The ICI team also includes Lynda Lahti Anderson and Jessica Simacek. “It’s a wonderful opportunity to look across the lifespan at outcomes, and to work at the intersection of public health, well-being, community living, and autism.”

In proposing the research network, UCLA investigators cited several studies showing autistic individuals report significantly lower physical and mental health-related quality of life than the general population. They experience chronic underlying health conditions, including gastrointestinal disturbances, sleep and eating disorders, and obesity. Investigators also pointed to a lack of research exploring gender and sex differences, despite a large body of evidence that autistic adults are less likely than the general population to be heterosexual or gender-conforming.

“We are still working out the details of ICI’s role and research contributions, but essentially it furthers our work in racial disparities in autism prevalence, and it opens up a broad new look at health outcomes across the lifespan,” said Hall-Lande.

Note: The Autism Intervention Research Network on Physical Health prefers the use of “autistic person” as opposed to “person with autism” in order to respect the preferences of self-advocates not to separate their experience of autism from who they are.

Alumni update: Casey Burrows, assistant professor of pediatrics

July 16, 2020

Helping a colleague prepare for a presentation recently on the state of autism in 2020, Casey Burrows reached out to teen clients and their families in the autism clinic at University of Minnesota’s department of pediatrics to ask about their reactions to the killing of George Floyd.

“The world isn’t expecting [people living with autism] to show a strong emotional response, but they are feeling this so strongly,” said Burrows (MNLEND, 2018–19), assistant professor of pediatrics. “We had some amazing responses.”

Some created visual art, others wrote passionately, debunking the common misconception that people with autism lack emotion.

“It’s very sad and heartbreaking to see so many Black men and women die from police brutality,” one teen wrote. “Events like this make me feel sick to my stomach.”

A parent talked about a family visit to the intersection of Chicago Avenue and 38th Street in Minneapolis to see the George Floyd mural.

“[My son] was overwhelmed with emotion and we had to leave after just three or four minutes,” the parent wrote. “He might show his emotions differently from others, but he feels them all the same.”

Said another parent: “Children with autism feel these things in a deep and visceral way that I have not seen often in the world until I met these amazing children of mine.”

The exercise is a prime example of Burrows’ philosophy on working with children and teens with autism.

“I came into LEND being very trained in a medical model. I did my training at medical schools and departments of psychology, so learning about everything else in the life of autistic individuals and their families was one of the best things about LEND for me,” Burrows said. “Seeing different providers and community members and what’s important to them is very different from what clinicians often focus on, and I’ve brought that into my clinical practice.”

Burrows sees her practice as a way to help people understand themselves and to help them capture their own strengths and areas of need.

“Where a more medical model would see impairments coming in when a child has very strong interests, I try to flip the perspective to see possibilities. I’m thinking of a client I see who has a strong interest in butterflies and is able to connect and share that with people. It brings them joy. I’ve learned so much from him. I see more butterflies in my daily life now.”

Burrows spends 60 percent of her professional time engaged in clinical training and research at the Elison Lab for Developmental Brain and Behavior Research within the University of Minnesota’s College of Education + Human Development. The remainder of her time is spent seeing clients directly and performing autism evaluations through the University’s Autism and Neurodevelopment Clinic.

She recently started working with a new therapy group for young people dealing with anxiety around the continuing pandemic.

For those struggling with stress or anxiety during this time, her advice includes taking advantage of all the ways to connect with school professionals, peers and others, from playing video games to going on a walk outside.

“Build in things to look forward to, and build up your own coping thoughts. Realize we’re going to get through this. Meanwhile, what can I do to keep myself and my family safe? We’re seeing these conversations having an impact.”

Looking ahead, Burrows and other Autism and Neurodevelopment Clinic providers are working on developing more wrap-around care and have recently hired a social worker to connect clients with more services.

“We’re thinking broadly about services people want, whether it’s honing parenting practices or getting them looped into community services,” she said. “We’re trying to think about the unmet needs of our clients and how to help.”

Preview: Prevalence data and autism awareness

March 19, 2020

Jennifer Hall-Lande at CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador in 2016. — Jennifer Hall-Lande at CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador.

World Autism Awareness day is April 2, kicking off a month of increased focus on the prevalence of and responses to autism spectrum disorder (ASD). The College’s Institute on Community Integration is one of 11 nationwide sites that make up the Autism and Developmental Disabilities Monitoring (ADDM) Network, a Centers for Disease Control and Prevention (CDC)-funded alliance tracking more than 300,000 8-year-olds in the United States. Every other year, ADDM sites report the prevalence and characteristics of children with ASD in multiple communities.

ICI’s Jennifer Hall-Lande (pictured at CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador in 2016) is one of ICI’s lead investigators, along with ICI Executive Director Amy Hewitt and Amy Esler on the Minnesota ADDM project, a team that also includes project coordinator Libby Hallas-Muchow. As the team prepares for the release of the 2020 Community Report from the ADDM Network, expected shortly, Hall-Lande and Hallas-Muchow agreed to answer a few background questions about prevalence data and ICI’s work in this area:

Q. The latest ADDM Network data on autism prevalence is expected soon. Can you bring us up to speed on the trends in the data in the last few years?

A. ADDM data is valuable in helping us understand not only the rates of autism, but also the characteristics of children with autism in our community. This data informs public policy and how we can improve services and supports. First collected in 2000, the data has shown relatively steady increases in the prevalence of ASD. Through those years, there have been changes in the way we define and diagnose autism. We really view it now as a spectrum, and therefore more children have come into the prevalence data over time, though the most recent changes in clinical definitions do not appear to have significantly affected the numbers. A robust, ongoing prevalence trend in the data shows more boys than girls (approximately 4 males to 1 female) being identified on the autism spectrum. An ongoing area of focus within the autism community is in lowering the age of initial diagnosis. We know that we can identify signs of autism as early as age 2, but the average diagnosis age remains around 4.3 to 4.8 years of age, around the time of the start of kindergarten. One hopeful prevalence trend, however, is that nationally we appear to be making some improvements at identifying children with autism across diverse communities.

Q. April is designated alternately as Autism Awareness Month, or Autism Acceptance Month, reflecting differences in the advocacy community about language and approaches around autism. Where does ICI’s work fall into this discussion?

A. Autism is viewed through many different lenses and we’re pleased to see the attention and focus being paid to the needs of ASD from all stakeholders. Our prevalence work is widely used throughout the community and is a strong policy advocacy tool, which has implications for appropriating resources and interventions. So, our focus is on providing data, early intervention and training that helps policymakers, communities, families, and individuals make informed decisions and support children with autism and their families. We acknowledge the complexity around topics such as causation, but our specific task on this project is providing the prevalence data to better understand rates of autism in our community. This data is a powerful tool for both understanding ASD in our community, but also for planning services and allocating resources to support children with ASD and their families.

MNLEND teams launch projects

March 19, 2020

Hosting a film series and discussions exploring cultural responses to autism. Asking families what services they need most. Evaluating and expanding a promising mentoring program.

These are just a few of MNLEND’s fellowship projects for 2019–20, marking a decade since the program’s inception. An interdisciplinary partnership of the University of Minnesota, MNLEND (Leadership Education in Neurodevelopmental Disabilities) brings together the College’s Institute on Community Integration (ICI), the College’s Educational Psychology Department, the School of Medicine’s Department of Pediatrics, and the College of Liberal Arts’ Department of Speech Language and Hearing Sciences.

The program also collaborates each academic year with a variety of other departments to train a cohort of fellows from the community at large and graduate programs across the university community, with the goal of creating the next generation of interdisciplinary leaders who will improve health and education outcomes for people with neurodevelopmental and related disabilities, such as autism.

As part of the experience, LEND fellows select and lead a project that matches their specific interests. Read more…

MNLEND Fellows explore the power of mindfulness

November 21, 2019

MNLEND Fellows Adam Langenfeld, Muna Khalif, and Jennifer Reiter.

Can mindfulness techniques help young families better support their children with autism and other neurodevelopmental disabilities? A team of MNLEND Fellows from the Institute on Community Integration aims to find out.

Responding to the stress often reported by families of children with autism spectrum disorder (ASD), the team is partnering with Communities Engaging Autism to both document the effectiveness of mindfulness techniques and to widen their use by families, particularly in the early days after a diagnosis.

MNLEND Fellows Muna Khalif and Jennifer Reiter are participating in the non-profit organization’s Mindfulness-Based Stress Reduction for Parents of Kids with Special Needs course, a seven-week class developed by Vanderbilt University. They hope to integrate the techniques into their own lives and then create opportunities for bringing them to more parents across Minnesota.

“Regular mindfulness practice has made me a calmer, more focused parent, which in turn helps my daughter (who lives with autism) better navigate situations that cause her anxiety,” said Reiter. “I’m interested in partnering with arts organizations that offer sensory or inclusive programming to create more opportunities to share these techniques across the state.”

Their MNLEND colleague Adam Langenfeld, a pediatrician completing a fellowship in developmental-behavioral pediatrics at the University of Minnesota, will use survey data to learn how the training affected class participants’ stress and well-being levels, as well as how the course can be improved for future participants. Longer term, he hopes to use more quantitative measures of stress, such as biofeedback.

“Techniques to help alleviate stress can not only help parents cope, but can also help them address problematic behaviors,” he said. “We hope that by providing further evidence that MBSR helps with parent stress, we can help Communities Engaging Autism gain additional support to provide the techniques to a wider audience.”

The team is working on the project with Beth Dierker, the organization’s executive director, who is also a MNLEND alum from the 2017–18 cohort.

“Our time together [in the mindfulness class] so far has been thoughtful, honest, and focused,” Dierker said. “I often remind myself and all of us to ‘begin again’ each day.”

Getting kids with autism and other NDDs out into nature

September 20, 2019

Despite a brutal late winter and spring in Minneapolis, a hearty team of children with autism and other neurodevelopmental disabilities (NDD) and their families more than doubled their average time outdoors during a six-month project exploring the health benefits of interacting with nature. Mollika “Molly” Sajady (MNLEND Fellow, 2018–19) and her mentor, Andrew Barnes, M.D., an Assistant Professor of Pediatrics at the University of Minnesota Medical School, co-led the project as part of ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities Program (MNLEND). Sajady is the mother of Luca (pictured last fall at age 8–10 months) and is a Developmental-Behavioral Pediatric fellow physician at the University’s Voyager Clinic, a developmental-behavioral clinic. After playing outdoors during the summer months, children are physically and mentally fit, but with the start of fall, it can be difficult for families to keep children healthy and connected to nature when the weather turns cold. Using motivational interviews and goal-setting, Sajady and her Voyager Clinic colleagues coached 28 participants on specific strategies for reaching their targets for outdoor activity.

Beginning in February, the team asked families about how much outdoor time they averaged per week over the past year and their new goal. After discussing what participants like to do outside, staff guided them to make a reasonable action plan. If families struggled with ideas, staff offered to search for parks or outdoor spaces close to home. The goal-setting and accountability were motivators, but all participants contributed to the project’s success, Sajady said. For example, some families tied in educational opportunities when they were outside together, such as discussing the benefits of vitamin D with their children. Others defied the cold winter weather by simply wearing more warm clothes. Some families said they would like the clinic to organize more outdoor activities.

Following up on the families’ requests for expanding outdoor opportunities, Sajady is working with the Minnesota Department of Natural Resources to educate health care providers about the developmental and health benefits of encouraging children to spend more time in nature. As part of this community partnership, staff hope to create a database of accessible and sensory-friendly parks in Minnesota. Voyager Clinic also plans to combine nature interventions with anxiety treatment programs for children with NDD. “Children with neurodevelopmental disabilities and their families deserve to take advantage of the health benefits of spending time in nature by finding enjoyable, accessible ways to get outside,” says Sajady.

MNLEND Fellow becomes a Special Education Director at Minneapolis Public Schools

August 22, 2019

Deeqaifrah (“Deeqa”) Hussein at her new office in the Minneapolis Public Schools.

The Minneapolis Public Schools have chosen Deeqaifrah (“Deeqa”) Hussein (MNLEND Fellow, 2017–18) as a Special Education Director. She credits many people and organizations for helping her get the position, including her husband Abdi Hussein (MNLEND Fellow, 2016–17) and family (she has two children with autism); the University of St. Thomas where she is earning her doctorate in Educational Leadership and Learning; her internship at the Minneapolis Public Schools with Rochelle Cox, Executive Director of Special Education and Health (and Hussein’s new supervisor); and the student/family advocacy skills she learned as a MNLEND Fellow at the College’s Institute on Community Integration (ICI). Hussein spent the past two years as an Autism Itinerant Teacher, and for two years before that she was a High School Special Education Resource Teacher. Going into her 14th year in education, she is now one of four Special Education Directors in Minneapolis who report to the district’s Executive Director. Each Special Education Director covers a different portfolio of schools, and Executive Director Cox oversees the entire department. Hussein brings both a professional and personal mission to her task.

When her eldest son, Ayub, who is now 11, was diagnosed with autism, she changed careers from being a teacher in general education to special education. She later learned that another son, Asad, now 7, was on the spectrum. “Being a parent of children with autism informs every decision I make as a teacher. The students I work with are just like my own children. Advocating for their needs is the greatest accomplishment a teacher could ask for. When our students thrive in the general education classroom, it is rewarding for us. We celebrate their gains while we accommodate their needs. Being a parent gave me the inside scoop of what family and home life is like for my students. It also gave me the advocacy skills and the educational training to fight for my children in the school district. I have the benefit for working for one district while my children attend a different district. I compare different programs and adapt and adjust for the next service that my students, as well as my children, should access.”

“I belong to many organizations and the fellowship taught me the benefit of cross-organizational networking; the autism community is well connected and MNLEND trains parents to seek equitable services for their loved ones,” says Hussein. Formally known as the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities Program, MNLEND is a center at ICI that prepares future leaders—known as Fellows—who will serve children with autism and other neurodevelopmental and related disabilities, and their families, in healthcare, education, human services, and policy settings. “I honed my advocacy skills while expanding my lens from parent and educator to a leadership perspective where I now think about improving the quality of life of children and families with disabilities through person-centered planning. I connected with other parents, doctors, speech and language pathologists, and other professionals I wouldn’t have met otherwise. I shared my own experience and benefited from the experiences of other fellows. The program combines families, educators, doctors, and experts in the field and trains them in leadership. And by listening to families, professionals learn to serve with humility and compassion. I have focused on my students’ quality of life and my own children’s trajectory of educational opportunities as they navigate through society. And I appreciate the diversity inclusion that MNLEND/ICI programming is extending to our communities of color.”

Podcast series to assist families with autism

April 17, 2019

On April 30, MNLEND Fellow Tera Girardin will launch her podcast series for families with children who have been recently diagnosed with autism or other developmental disabilities, as part of her Minnesota Leadership Education in Neurodevelopmental Disabilities (MNLEND) project. The podcast will be hosted by Beth Dierker (MNLEND Fellow, 2018), Executive Director of Communities Engaging Autism. Girardin and Dierker are both parents of children with autism and the podcast series will provide useful information to families who are wading through the information and decisions that accompany a diagnosis of autism or other developmental disabilities.

Conversational in tone but grounded in research, The Oxygen Mask Podcast will have six episodes in its first season. The series title refers to airline safety procedures that advise families to put on their own masks before assisting others. “We want to provide families an oxygen mask, or a breath of fresh air and a pause, for parents who are navigating their families’ journey with autism or other developmental differences,” says Girardin, a photographer who also wrote and illustrated the book Faces of Autism. Themes for the planned podcast include self-care while caring for others, person-centered thinking, advocating for the child, relationship strains, avoiding burnout and information overload, and learning to trust one’s instincts. The podcasts will be distributed through the Communities Engaging Autism website, Tera Photography website, and other podcast and social media platforms.

MNLEND Fellows past and present lead Multicultural Autism Action Network

February 21, 2019

Maren Christenson Hofer (pictured in foreground, second from right), a Fellow in ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, is honing her intercultural communication and negotiation strategies in a new setting. For 20 years, she worked in international business development. Now, as a MNLEND Fellow, she practices multicultural communication back in Minnesota as a leader in the Multicultural Autism Action Network (MAAN), a nonprofit organization that helps families navigate complex educational, medical, therapeutic, and autism support and service systems. As the parent of a child with autism, she has firsthand knowledge of those complexities, and — thanks to her intercultural experience — knows they can be almost overwhelming when differences in culture, language, and power dynamics are at play. Working at MAAN continues to broaden her intercultural education while expanding the support network of families of children with autism among Minnesota’s underserved communities. Hofer’s interest in the interdisciplinary MNLEND program was sparked by the opportunity to see the world of neurodevelopmental disability through different lenses; her work with MAAN offers similar opportunities to share knowledge from her personal experience and learn from others.

“Working in intercultural communities, we often talk about seeing through another’s lens,” says Hofer. “I see through the eyes of a parent of a child with autism, and MNLEND shares the perspective of practitioners, professionals, and other providers in our community. I learn from others in my cohort and at times teach them about how the world looks from a family’s perspective. Seeing multiple perspectives makes us all stronger in our respective fields.”

In MAAN, Hofer helps to provide safe spaces where families from different cultures can learn from, and support, each other. Together, MAAN families address the information imbalance between families and service providers, develop leadership capacity within under-represented groups, share information about evidence-based practices and how to access them, offer assistance with insurance forms and service applications, attend appointments, and provide in-person support to listen to each other without judgment or fear of stigma.

Two former MNLEND Fellows also support MAAN’s work: Mariam Egal (third from left), a coordinator at the Minnesota Department of Health, and Fatima Molas (right), a respiratory therapist and parent-advocate. Another MAAN member, Dr. Delia Samuel (left), has served as guest faculty for MNLEND.

ICI’s telehealth lab improves access to autism intervention services

December 21, 2018

ICI's telehealth lab manager Jessica Simacek wearing a headset and looking at a tablet and a client on her computer screen. — ICI’s telehealth lab manager Jessica Simacek uses audio-visual telecommunications technology to assist people with disabilities and their families, notably in Greater Minnesota.

Early identification, treatment, and intervention helps Minnesota’s children with autism and other neurodevelopmental disabilities reach their potential, but families can encounter waitlists up to a year for evaluation services. Part of the reason for this long delay is geography and journey time: Autism evaluation clinics are typically located in the Twin Cities, but families of children with autism live all over the state. Reducing waitlists can be critical for young children with autism because intervention is most effective while the young brain is still developing.

ICI’s Jessica Simacek (pictured), Adele Dimian, and Jennifer Hall-Lande, are collaborating with Amy Esler from the Autism Spectrum and Neurodevelopmental Disorders (ASD) Clinic at the University of Minnesota’s Department of Pediatrics to see if ICI’s telehealth laboratory can help shorten these waitlists and improve access to early intervention among children with autism. Telehealth refers to using telecommunications technology to support long-distance clinical healthcare, health management, and education via devices like smart phones and home computers. Telehealth also reduces the need to schedule appointments with providers; the technology can be synchronous or asynchronous, meaning people with disabilities and their families can either communicate in real time with a medical professional or leave audio-visual messages that professionals can see and hear later.

“Too many children and their families face barriers to accessing needed intervention services,” says Simacek, who has managed the lab since it began a year ago. “I investigate innovative interventions that are timely, efficient, and effective for children with neurodevelopmental disabilities. The ICI telehealth laboratory allows us to leverage technology to reach children and families who may live in rural areas or may be on lengthy waitlists for intervention. We also provide training and technical assistance on the use of telehealth, which allows providers, educators, and researchers to use telehealth to improve and extend their practices.”

ICI and Hennepin County collaborate to improve early screening and intervention

December 20, 2018

Jennifer Hall-Lande, on behalf of ICI, has received a $50,000 Hennepin-University Partnership Fall 2018 Mixer grant for a new project, scheduled to begin January 1, 2019, supporting healthy development and enhancing early intervention outcomes for Hennepin County children. Known as “Building Healthy Children and Strong Families: Increasing Access to Early Screening and Early Intervention,” the one-year project — co-directed by Hall-Lande and Karen Adamson, a Child Well Being Area Manager for Hennepin County — will study screening rates in Minnesota’s largest county and follow up for early intervention services. “Hennepin County and the University of Minnesota both want to empower families and improve health, well-being, and educational outcomes for all children,” says ICI’s Hall-Lande. The project will connect autism resources and early intervention research from the University with the county’s best practices. “This project provides valuable data to evaluate progress on screening rates and early intervention access for Hennepin County children,” adds Hall-Lande. “We hope to increase access and improve lives of children and families.”

The project will evaluate family perspectives on early screening and intervention in Hennepin County, including cultural and contextual factors that affect access, and learn why families may or may not pursue early screening and early intervention. Finally, the project will determine the impact of the parent-to-parent navigator model on family engagement and participation in early screening and intervention follow-up, developing a parent-to-parent community support model for future use.

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