Mapping the futures of autistic children

Published by: Spectrum
Written by: Elizabeth Svoboda

Kimberlee McCafferty knew something was different about her son Justin when he was just a baby. He had stopped babbling around his first birthday. He rarely accepted the food she offered or interacted with others, and his favorite pastime was spinning his toys across the wood floor. Before he turned 2, Justin was diagnosed with autism.

The diagnosis sent McCafferty, of Brick, New Jersey, on the kind of medical odyssey familiar to many parents: batteries of behavioral tests, dietary changes and a menu of therapy options. A few months into this journey, an autism specialist at Georgetown University in Washington, D.C., examined Justin, who is now 18, and rendered a sweeping judgment about his future. “Your child will never speak or live independently,” the doctor told McCafferty flat out. His words dropped like an anvil, leaving McCafferty shaken. “I remember thinking, ‘That’s a pretty damning statement to make when the child is not yet potty trained.’”

Specialists say families are right to be skeptical of such point-blank verdicts. The business of making such forecasts in young children is fraught, especially because some children defy them in unexpected ways. “We see huge variability in how symptoms progress,” says So Hyun “Sophy” Kim, assistant professor of psychology in clinical psychiatry at Weill Cornell Medicine in New York City. “It’s not always easy to predict what’s going to happen down the road.”

Yet researchers have assembled a rich body of data about how autistic people do over time and can provide certain kinds of nuanced projections. The work points to several broad life trajectories for autistic children — rough sketches of how a child’s adolescence and adulthood may unfold. The data also point to subtle, early behavioral markers of future growth or difficulties in specific areas, as well as genetic variants that affect the arc of a child’s trajectory. Some of the research could help clinicians gauge an autistic child’s risk of having mental health challenges such as anxiety and depression as well. Click here to read the rest of the story

What you should know about severe autism

Media is slowly getting better in it’s portrayal of people with autism in both movies and television, while many still hold onto to the perception of “Rain Man”, I do believe we are moving in the right direction. Still, little is discussed or talked about when it comes to children and adults with severe autism. Some may refer to severe autism as “low functioning when in fact autism is a spectrum in both symptoms and behaviors and varies from person to person.

Children and adults with severe autism often display the following signs :

  • Impaired social interaction
  • Difficulty in communicating- both expressive and receptive
  • Obsessive compulsive disorder
  • anxiety
  • aggressiveness
  • self-injurious

According to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are 3 levels of severity based on social communication impairments, restricted, and patterns of behaviors. The severity level (Level 3) is defined as requiring very substantial support. For example the person may exhibit very limited initiation of social interaction and extreme difficulty with coping and change. signs may include an indifference in others, using negative behavior to communicate, very little or echolalia, sensory sensitivity will vary from severe to none, may be self-injurious and have an intellectual disability.  Below you will find articles on understanding severe nonverbal autism:

5 nonverbal children that found their voices

Autism: How do you communicate with a non-verbal child

Helping nonverbal kids to communicate

I have nonverbal autism…Here is what I want you to know

Nonverbal autism: Symptoms and treatment activities

Missing brain wave may explain language problems in nonverbal autism

Overview of nonverbal autism

What can we learn from studying severe autism?

What makes severe autism so challenging?

Why being nonverbal doesn’t mean being non-capable

Why children with severe autism are overlooked?

Updated 8/23/2020

Developmental Disability Data/Survey Resources

ADHD

ADHD and psychiatric comorbidity

ADHD throughout the years (CDC) 

National Prevalence of ADHD and Treatment

National survey of the diagnosis and treatment of ADHD and Tourette Syndrome -Survey about children aged 2 to 15 years old in 2011-2012.

What types of treatment do children with ADHD receive?

Autism

Autism Data Visualization Tool– prevalence estimates and demographic characteristics at the national, state and community levels (CDC)

CDC releases first estimates of the number of adults living with autism spectrum disorder in the United States

New ASD prevalence numbers show gaps are closing, but more work is needed

National Database for Autism Research– HealthData.Gov

Prevalence of self-injurious behaviors among children with autism spectrum disorders

Cerebral Palsy

Birth prevalence of cerebral palsy

Prevalence of cerebral palsy, co-occurring autism spectrum disorders, and motor functioning

Developmental Disabilities

Increase in developmental disabilities among children in the United States

Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disabilities, and vision impairment, Metropolitan Atlanta, 1991-2010

Mental Health

U.S. children with diagnosed anxiety and depression

Study Reveals Increased Prevalence of Mental Illness in Adults with CP

Source: Cerebral Palsy News Today
Written by: Marisa Wexler

A recent study found that adults with cerebral palsy have a higher risk of developing mental health conditions, highlighting the need for better holistic care in this population.

The study, “Prevalence of Mental Health Disorders Among Adults With Cerebral Palsy: A Cross-sectional Analysis,” was published in the journal Annals of Internal Medicine.

Most research on cerebral palsy (CP) focuses on children because, until relatively recently, it wasn’t that common for people with CP to live through adulthood. That paradigm is rapidly changing, so it’s necessary for researchers and clinicians to understand the challenges adults with CP face so they can be given the best possible care and support to have not just a longer life, but higher quality of life. Click here to read the rest of the story.

Could motor problems be one source of autism’s social difficulties?

Source: Spectrum
Written By:

For 6-year-old Macey, lunchtime at school is not so much a break from reading and math as it is an hour rife with frustration.

Here’s how Macey’s mother, Victoria, describes Macey’s typical lunch break: In her special-education classroom an hour north of San Francisco, Macey’s classmates gather at a big square table, chattering away and snatching one another’s food. Macey, meanwhile, is sequestered away at a small white table in a corner, facing a bookshelf. She grabs the handle of a spoon using the palm of her right hand, awkwardly scoops up rice and spills it onto her lap. She wants to be at the big table with her peers, but she sits with an aide away from the other children to minimize distractions while she eats. (Victoria requested that we use her and Macey’s first names only, to protect their privacy.)

After lunch, the children spill out onto the playground. Macey, wearing a helmet, trails behind, holding her aide’s hand. She can walk, but she often trips on uneven surfaces and falls over. She tends to misjudge heights, and once pulled a muscle while climbing on playground equipment. When she was 3, she tripped and fell headfirst out of a sandbox, scraping her face, chipping one tooth and dislodging another. Click here to read the rest of the story