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When Down Syndrome and Autism Intersect (2nd edition)

Author: Margaret Froehlke, RN, BSN, and Robin Sattel, MS - Book (2024)

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and Professionals       Publisher description The first edition of When Down Syndrome and Aut

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Down Syndrome and Autism Spectrum Disorder Presentations

Author: Multiple Presenters - Multiple Organizations

The Dual Diagnosis of Down Syndrome and Autism Webinar   Presenters: Noemi Spinazzi, MD, FAAP, and Teresa Unnerstall Host Organization: Down Syndrome Connection of the Bay Area   Aut

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Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

Author: Brian Chicoine, MD, Erin Dominiak, MD, Hannah Graham, MD, and Farah Chaus, MD - Adult Down Syndrome Center

UPDATED January 18, 2024 The physicians of the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follow the recommenda

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Activities You Can Do at Home

Author: Adult Down Syndrome Center - Resource List

Are you looking for suggestions of activities you can do at home? We have compiled a list of some ideas below! There are ideas for arts and crafts, cooking, education/learning, fitness and physical ac

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Information Forms to Share with Hospitals and Clinics

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

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Alternatives to Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Families trying to decide what level of support would work best for their adult family member with Down syndrome may want to look at options besides guardianship . Individuals with Down syndrome and t

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Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Whether you decide to obtain guardianship for your child is an individual family decision that should be considered carefully. If your child is 18 years old and is unable to make decisions about finan

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Long COVID in Adults with Intellectual Disabilities

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

A complication of having COVID-19 infection is a condition called long COVID (it has also been called long-haul COVID, chronic COVID, post-COVID conditions, and others). The National Task Group on Int

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Recommendations for Treatment of Mild to Moderate COVID-19 Infection

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

We have only seen or heard of a few cases of severe COVID-19 infection in our patients with Down syndrome who have received COVID-19 vaccines. Our experience has been consistent with the data

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Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Autism Speaks and DSMIG-USA DS-ASD Workgroup - Website

It is estimated that about 16-18% of people with Down syndrome also have autism spectrum disorder (ASD). The Down Syndrome Medical Interest Group-USA DS-ASD Workgroup collaborated with Autism Speaks t

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Immune Response to COVID-19 Vaccines

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

We have shared both our clinical experience and studies that demonstrate clinical effectiveness and safety of COVID-19 vaccines in people with Down syndrome. However, until recently, studies have not

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Wearing Face Masks During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED 1/14/2022 : The CDC has provided updated information on what types of masks to wear . The Centers for Disease Control and Prevention (CDC) recommends wearing masks in public settings, such as

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T21RS COVID-19 and Down Syndrome

Author: Trisomy 21 Research Society - COVID-19 Taskforce

The Trisomy 21 Research Society  (T21RS) has developed several taskforces in response to the COVID-19 pandemic. The taskforces are studying COVID-19 infection and vaccination in people with D

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DSMIG-USA IDD COVID-19 Vaccination Position Statement

Author: Down Syndrome Medical Interest Group - USA - DSMIG-USA

On December 16, 2020, the Down Syndrome Medical Interest Group - USA issued a position statement on the COVID-19 vaccine. The position statement has been updated several times, most recently on Novemb

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Possible Causes of Regression in People with Down Syndrome during the COVID-19 Pandemic

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight.

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Mental Health Causes for Behavior Change During a Pandemic Webinar Recording (3/28/2021)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on March 28, 2021 as part of the Massachusetts Down Syndrome Congress 37th Annual Virtual Confer

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Taking Medication for Side Effects from the COVID-19 Vaccine

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

As with all vaccines, there is the potential to experience side effects after getting the COVID-19 vaccine. This is true for people with and without Down syndrome. These side effects may include pain

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Co-Occurring Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Down Syndrome-Autism Connection - Website

It is estimated that 16-18% of people with Down syndrome also have autism spectrum disorder. The Down Syndrome-Autism Connection  is a nonprofit organization that provides s

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Financial Wellness: A Guide for Individuals with Disabilities, their Families and Caregivers

Author: National Down Syndrome Society - In collaboration with Voya Cares

In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi

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Routines during the Pandemic

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

When the COVID-19 pandemic started, my first thoughts of concern for our patients and all people with Down syndrome were around the virus and the potential of becoming severely ill with COVID-19. We h

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Hospital Visitor Policies During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution  on the first federal com

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Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos

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Non-Discrimination in Medical Treatment for COVID-19

Author: Adult Down Syndrome Center - Resource List

Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar

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Down Syndrome and Autism

Author: National Down Syndrome Society - Website

The  Down Syndrome and Autism    page on the National Down Syndrome society's website has information and resources about the dual diagnosis of Down syndrome and aut

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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