Healthcare Extension and Accessibility for Developmentally disabled and Underserved Population Act of 2018

The Healthcare Extension and Accessibility for Developmentally disabled and Under served Population Act of 2018, or HEADs UP Act, would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP) under the Health Services and Resources Administration (HRSA). People with I/DD experience poorer health, shortened life expectancies, and lack access to even the most basic forms of care when compared to the non-disabled population. A designation as a MUP would help […]

Should You Explain the Diagnosis to the Child?

BY: Tony Attwood, Ph.D. The immediate answer is yes. Clinical experience indicates that it is extremely important that the diagnosis is explained as soon as possible and preferably before inappropriate compensatory mechanisms are developed. The child is then more likely to achieve self-acceptance, without unfair comparisons with other children, and be less likely to develop signs of an anxiety disorder, depression or conduct disorder. When and How do you Explain the Diagnosis? At what age […]

The Challenge of Physical Fitness for People with Autism

Marina Sarris Interactive Autism Network ian@kennedykrieger.org You’ve probably seen the headlines: studies say that children and adults with autism are at risk for an inactive lifestyle and obesity. While the reasons are subject to debate, it’s clear that people with ASD often face unique challenges to physical fitness. The core features of autism – social, communication and behavior problems – can make joining a game of kickball at recess or playing tag with neighborhood kids […]

Health Disparities for Adults with IDD Make Inclusive Health a Worthy Goal

By Janet Shouse Did you know that people with intellectual and developmental disabilities die an average of 16 years earlier than typical Americans? And unlike other Americans, women with IDD die earlier than men with IDD. This is not information any of us really want to hear. So why is this happening? We know that people with intellectual and developmental disabilities have a higher rate of co-occurring physical disorders, such as epilepsy, chronic constipation, obesity, […]

What does a student with Asperger Syndrome need in a school program?

BY: LYNDA GELLER, Ph.D. Anyone who knows many children and adults with Asperger Syndrome knows that every person’s manifestation of the condition is very different. While they share significant social disability, some are very successful academically, some struggle with accomplishing work; some have intense intellectual interests that lead them to career paths, and others have intense interests that seem to have no practical use; some have a few friendships, others are desperately alone and lonely. […]

Sleep Problems Linked to More Severe Autism Symptoms

Marina Sarris Interactive Autism Network at Kennedy Krieger Institute ian@kennedykrieger.org In autism, lost sleep means more than just a drowsy morning: it’s linked to serious problems. A new study of children with autism shows that those who slept less also had lower intelligence scores and more severe autistic symptoms than kids who slept more.1 This is important because insomnia affects from 50 to 80 percent of children on the spectrum, according to estimates.1-5 They are […]

Why Doctors Should Ask About the Use of Supplements in Patients with Down Syndrome

My wife is a pediatrician and in better health than I am. She is physically fit and obsessively exercises, which is more than I would claim about myself. She begins her day in a routine way, which includes drinking a foul-smelling concoction of green tea, herbs, and spices that are said to have anti-inflammatory qualities. She uses it to wash down fist-full of supplements, which are without solid scientific evidence of extending life or delivering […]

A Complicated Landscape: Parents’ Perceptions of Stress, Control in Autism

Marina Sarris Interactive Autism Network at Kennedy Krieger Institute ian@kennedykrieger.org A decade ago, Sarah S. Mire helped assess autism symptoms in children who came to Baylor College of Medicine in Texas for a research project. She got to know their families and appreciate the time they devoted to the Simons Simplex Collection (SSC), an autism study that recruited families at university centers throughout the United States and Canada. Like other families affected by autism,1-3 many […]

Autism Risk Determined by Health of Mother’s Gut

Summary: Researchers have successfully identified autism risk in young mice by examining their mother’s microbiome during pregnancy. The study, which may offer the earliest detection of autism, could pave the way to developing preventative measures against forms of autism by altering the maternal diet and probiotic intake. Source: University of Virginia Health System. The risk of developing autism-spectrum disorders is determined by the mother’s microbiome – the collection of microorganisms that naturally live inside us […]

Parental Perspectives on Down Syndrome Research Webinar – July 31 – NTG notice

In our webinar series this year, participants have heard from researchers and me about the exciting research that is getting closer to clinical trials and the potential outcomes these promising interventions could have on individuals with Down syndrome. Today, I invite you to register for our July 31st webinar to hear about the priorities, expectations and concerns for Down syndrome research that families have. Parental Perspectives on Down Syndrome Research and 5 ways to families can […]