Resources for CARE Families
Compiled from the ASF’s Resources and the CARE Team
We hope you’ll find some of the resources below helpful as you navigate these very difficult times of establishing drastically different routines for your family.
COVID-19 Resources for The ASD Community
- Coronavirus Resources: InterAgency Autism Coordinating Committee
- Coping with Coronavirus: National Institute of Mental Health
- BMC's Autism Program: Resources for Families
Managing Your Child’s Education and Free Time
The Department of Education has published a Q&A focused on providing services to children with disabilities during the coronavirus outbreak, which can be downloaded here.
The National Council on Severe Autism has created an online event for parents and caregivers to share stories, concerns, advice, and questions. Their guest commentators Lee Wachtel, MD, Medical Director, Neurobehavioral Unit, Kennedy Krieger Institute, and Alycia Halladay, PhD, Chief Science Officer, Autism Science Foundation, joined NCSA President Jill Escher and Vice President Feda Almaliti in leading the discussion. Topics included everything from hand washing to mommy guilt during this time. You can view the recorded video here.
The Center for Discovery has shared great ideas for indoor and outdoor activities for families in the time of coronavirus. Click here to view.
The National Autism Association has put together an excellent list of resources including teaching tools for kids, tips for caregivers and how to practice social distancing. Click here for their list.
Tamika Cody from News10 in Tampa interviewed local experts about things you can do at home with kids with autism during this challenging time, including dealing with playdates and boredom.
For a full list of education companies offering free subscriptions due to school closures, click here.
Social Stories for COVID-19
The University of Miami-Nova Southeastern University Center for Autism & Relations Disabilities curated a fantastic list of resources such as social stories and visual tools for those working with individuals who have developmental disabilities, including special educators, therapists and families can be downloaded here and here.
There’s another great social story to help kids adjust to the disruption to their routine caused by having to stay home from school, released by the Howard County Autism Society, to be found here.
The Autism Science Foundation’s most recent podcast, hosted by ASF CSO Dr. Alycia Halladay, has great tips for handling your child’s crisis-related anxiety. You can listen here.
Infectious disease expert Dr. Stanley Plotkin says epilepsy does not increase the risk of contracting the coronavirus, nor does it add additional risk to someone who is diagnosed.
CURE hosted a Facebook live stream on COVID-19 with neurologist Dr. Jeffrey Loeb, neuroimmunologist Dr. Michael Carrithers from the University of Illinois at Chicago, and pediatric neurologist Dr. Douglas R. Nordli from UChicago Medicine.
The Epilepsy Foundation hosted a Facebook live with Patty Osborne Shafer, RN, MN, Jacqueline French, MD and Elaine Wirrell, MD. A Facebook live in Spanish aired on Thursday, March 19, at 8 p.m. ET with Angel Hernandez, MD and Joe Sirven, MD who answered questions from their Spanish-speaking community.
DEE-P Connections, in conjunction with International Foundation for CDKL5 Research-IFCR and Epilepsy Foundation of America, is pleased to invite you to join us for a webinar specifically geared towards our families. On March 19th, at 7PM ET, they will host a webinar “Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19.” Please register in advance at:
Video modules to improve children’s social and communication abilities
Help is in Your Hands is a series of video modules for families of very young children with social communication challenges. Modules include narrated video lessons and examples of real parents and children interacting in their own homes, with suggestions for follow-up activities parents can try.
The Autism Navigator is a unique collection of web-based tools and courses that uses extensive video footage to coach parents on delivering evidence-based tools in a multitude of settings. It includes the Video Glossary that contains over 100 video clips to illustrate common treatments available for children with autism.
Medicaid Rules, Waivers and Changes
The Centers for Medicare and Medicaid Services are taking actions to allow more flexibility for healthcare providers, including expanded telemedicine access, to provide services for those covered individuals.
Autism Education Attorney Gary Mayerson shares information about how to work with your school district to ensure your child’s IEP is being implemented appropriately and remote learning opportunities are being provided.
What to do if Your Family Member with Autism is Diagnosed with Coronavirus and Hospitalized
Psychiatric Mental Health Nurse Practitioner Erin Lopes provides guidance on what to do if your family member with autism is diagnosed with coronavirus and hospitalized.
The Autism Society of America launched a Facebook Live series dedicated to providing relevant, COVID-19 information for the autism community. The weekly broadcast will feature an expert discussing specific topics like mental health, federal emergency funding, and financial planning.
Autism Speaks has put together a comprehensive list of resources for the autism community organized by topic including for families, for educators and health professionals, non-english resources and WHO guidance for the public. Find the list here.
Green Mountain self-advocates has written a social story about managing symptoms. You can find it here.
Autism Focused Intervention Resources & Modules (AFIRM) has published a guide called Supporting Individuals with Autism through Uncertain Times.
This past week, we celebrated a new chapter for our beloved TESLA Parent Workshop leader moving on to an exciting opportunity, though we will miss her very much in the lab. You'll still be able to meet Daniela at the Saturday Parent Workshops that are one component of the TESLA study. Daniela loves animals (she has a dog and two cats at home!), so the cake was made to look like a bunny! Daniela worked with Helen for almost 20 years, and we had a nice party to cap them off.
Some CARE lab members were at UCLA for a week last month to complete some necessary training for a new project we're starting in the new year with collaborators at UCLA (Dr. Connie Kasari's lab) and at Cornell (Dr. So Hyun Kim's lab), and while they were there, Emily took center stage to teach others about the ELSA assessment, developed here in our lab, during lunch!
Over the past few years, we've been working with Professor Angela Morgan and a scientist in her group, Dr. Amanda Brignell, both of whom are speech and language pathologists at the Murdoch Children's Research Institute, part of Royal Children's Hospital in Melbourne, Australia. Drs. Morgan and Brignell have been working with us to look for signs of Childhood Apraxia of Speech (CAS) in some individuals with autism. Recently, Dr. Brignell won the Hugh Rogers Fellowship that allowed her to travel to Boston and visit for a few weeks to continue her research. We very much enjoyed her time in the lab (complete with a crash course in the geography of Australia!) and look forward to continuing to work with her!
Kayla Finch, one of our wonderful graduate students here at CARE, is 'Dr. Finch' now! Dr. Finch successfully defended her doctoral dissertation research on "Neural Indices and Looking Behaviors of Audiovisual Speech Processing in Infancy and Early Childhood" last week.
Here she is with her committee: Dr. Helen Tager-Flusberg, Professor, our Center Director, and Kayla's primary mentor; Dr. Melissa Kibbe, an Assistant Professor and Director of the Developing Minds Lab, who chaired the committee; Dr. Finch herself; Dr. Amanda Tarullo, an Assistant Professor and Director of the Brain and Early Experiences Laboratory; and Dr. Charles Nelson, Professor at Harvard Medical School and Research Director in the Division of Developmental Medicine at Boston Children's Hospital.
Congratulations, Dr. Finch, we are so proud of you!
Here at CARE, both Helen, our Center Director, and Daniela, a Co-Investigator and Family Coordinator, share the same mid-March birthday! We celebrate with a cake at one of our lab meetings. This year, Helen blew out the candles (they were the sparkler kind and kept relighting!) while Daniela looked on. In the background is Trisha, one of our fabulous interns on the TESLA project.
Prevalence and Correlates of Psychiatric Symptoms in Minimally Verbal Children and Adolescents with ASD
As part of our Center's efforts to characterize the psychological profiles of children and adolescents with ASD who are minimally verbal, we recently published a paper describing the types and incidence of psychiatric symptoms in this population. Findings, based on parent report measures, indicated that the number of clinically significant psychiatric comorbidities emerged as the main predictor of problem behaviors. Nevertheless, the wide range of co-occuring psychopathology was not directly related to autism symptom severity, intellectual disability or limitations in adaptive functioning in our sample of children and adolescents.
Read the full article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6387942/
A very informative article published by Spectrum News about the possibility of computers being able to distinguish individuals with autism from typically developing peers, as well as the mathematical and ethical challenges still in the way before this could become clinically useful.
Our project with Charles Nelson at Boston Children's Hospital is mentioned! Check out our page about that project here: https://www.bu.edu/autism/research/current/isp/
Development of fine motor skills is associated with expressive language outcomes in infants at high and low risk for autism spectrum disorder
A paper published in the Journal of Neurodevelopmental Disorders this year by Boin Choi, a student in Dr. Charles Nelson's lab at Harvard University, and in collaboration with Helen, our director, found that fine motor skills are associated with expressive language outcomes in high-risk infants. They found that high-risk infants who were later diagnosed with ASD had significantly slower growth in fine motor skills between 6 months of age and 2 years of age, and that fine motor skills at 6 months of age predicted expressive language outcomes at 3 years of age.
You can download the paper here: Choi_JNeurodevDisor_2018.
Sophie Schwartz, one of our doctoral students, is Autism Speaks’ first Royal Arch Mason’s predoctoral fellow. Recently, Autism Speaks had a blog post highlighting Sophie's work here at the center! Sophie's work is part of the CAPS project, and examines auditory processing in typically developing individuals and those with ASD. Read the Autism Speaks blog post here.