What you should know about severe autism

Posted on December 2, 2020 by specialneedsresourcetrainingblog

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

Posted on July 16, 2020 by specialneedsresourcetrainingblog

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

Study Reveals Increased Prevalence of Mental Illness in Adults with CP

Posted on December 16, 2019 by specialneedsresourcetrainingblog

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.

Why Children With ‘Severe Autism’ Are Overlooked by Science

Posted on September 10, 2018 by specialneedsresourcetrainingblog

Published by: Spectrum
Writtten by: Alisa Opar

It should have been a perfect day. Lauren Primmer was hosting an annual party at her home in New Hampshire for families that, like hers, have adopted children from Ethiopia. On the warm, sunny July afternoon, about 40 people gathered for a feast of hot dogs, hamburgers and homemade Ethiopian dishes. The adults sipped drinks and caught up while the children swam in the pool and played basketball. It was entirely pleasant — at least, until the cake was served. When Primmer told her 11-year-old son Asaminew that he couldn’t have a second piece, he threw a tantrum so violent it took three adults to hold him down on the grass.
The Primmers adopted Asaminew from an orphanage in Ethiopia in 2008, when he was 26 months old. They had already adopted another child from the same orphanage in Ethiopia, and they have four older biological children. From the beginning, Primmer says, “He would only go to me, not anyone else.” That tendency, she later learned, may have been a symptom of reactive detachment disorder, a condition seen in some children who didn’t establish healthy emotional attachments with their caregivers as infants.
About a year and a half later, the family adopted three more Ethiopian children — siblings about Asaminew’s age — and he became aggressive. “When they first came, Asaminew was very abusive,” Primmer recalls. “He’d bite and scratch them.” The Primmers had to install gates on all of the children’s bedroom doors for their safety. Soon after he entered preschool, Asaminew began lashing out at his classmates, too. His teachers suggested that he be evaluated for autism. Doctors at the Dartmouth Hitchcock Clinic in Manchester, New Hampshire, diagnosed him with the condition. In addition to his violent episodes, they took note of his obsession with lining up toy cars and flushing toilets, his habit of taking his clothes off in public and his tendency to not follow rules at home or school. Asaminew is intellectually disabled and speaks in short, simple sentences. Click here to read the rest of the story

Children with ADHD and Autism Are More Likely To Develop Anxiety

Posted on April 2, 2018 by specialneedsresourcetrainingblog

Website: News Medical Life Sciences

The study, which compares comorbidities among patients with ASD and ADHD, and ASD alone, is one of the largest of its kind.

A team of researchers from the Kennedy Krieger Institute used the data from a cross-sectional survey of children aged between six to seventeen years old with ASD. The study included 3,319 children, 1,503 of which had ADHD and were monitored by the Interactive Autism Network between 2006 and 2013. Click here to read the rest of the story

Study of Nonverbal Autism Must Go Beyond Words, Says Expert

Posted on November 8, 2017 by specialneedsresourcetrainingblog

Source: Spectrum
Author: Sarah Deweedt

Roughly 25 percent of people with autism speak few or no words. A generation ago, that figure was closer to 50 percent. Most researchers agree that the decline is due to the recognition of more people with milder forms of autism, as well as to the advent of early intervention programs that have helped more children. Click here for the rest of the story.

Over 30 Online Resources on Rett Syndrome

Posted on October 29, 2015 by specialneedsresourcetrainingblog

So much has been written on the subject of Autism, but how much do you know about Rett Syndrome? This disorder fall under the autism spectrum disorder category due to similar traits and characteristics.

Rett Syndrome is a neuro-developmental rare disorder that affects primarily girls. Discovered by Andreas Rett who described the symptoms as wasting and slow growth. Rett Syndrome is rare and occurs in 1 out of 23,000 births. The disorder consists of four stages:

Stage 1: Generally begins between the ages of 6 and 18 months. Gross motor skills begin to slow down and stagnates

Stage 2: Between the age of 1 and 3 years, will regress and lose any skills that were previous acquired.

Stage 3: During this stage, apaxia becomes apparent. Seizures become common and gross motor skills deteriorate.

Stage 4. Loses all gross motor skills and generally uses a wheelchair.

Symptoms

Difficulty in coordination
Loss of communication skills
Dyspraxia
Severe motor disabilities
Abnormal hand movement
Breathing abnormalities
Cold hands and feet
Apraxia

Similar in Autism Characteristics include:

Screaming
Crying
Hyperventilation
Lack of eye contact

Similarities in cerebral palsy include:

Hypotonia
Gait difficulties
Spasticity
Teeth-grinding

Medical Sites

Boston Children’s Hospital

Cleveland Clinic

Mayo Clinic

MedicineNet.com

Medscape

National Institute of Neurological Disorders and Strokes

National Organization for Rare Disorder

Science Daily

WebMD

Wikipedia

Organizations and Foundations

Girl Power 2 Cure

Kate Foundation

New Jersey Rett Syndrome Association

Northwest Rett Syndrome Foundation

Rett Syndrome.org

Southeastern Rett Syndrome Alliance

Twitter

Rett Girl

Rett Syndrome GP2C

Rett Syndrome News

Rett UK

Facebook

Cure Rett

Ontario Rett Syndrome Association

Rett Syndrome of Ireland

Blogs

Grace for Rett

Jessica’s Journey with Rett Syndrome

Living with Rett Syndrome

My Silent Angel’s Fight

Teaching Strategies

ACC for Children Who Have Rett Syndrome

Multi-Model Communication Strategies

Rett Syndrome: Teacher Tools

Some Rett Syndrome Tips

You Tube Video’s

Down Syndrome Organizations

Posted on October 23, 2014 by specialneedsresourcetrainingblog

The internet offers a number of website that provide resources on Down syndrome. Topics including family support groups, education, medical and advocacy. For additional information, click on the links below:

Band of Angels: http://www.bandofangels.com/-

Established in 1994, Band of Angels provides support for individuals with Down Syndrome and their families. The website offers links on Down Syndrome support groups and a litany of topics including, adoption, autism and education.

Down Syndrome International https://www.ds-int.org/

A U.K. based international organization comprising a membership of individuals and organizations from all over the world. Disseminates information on Down Syndrome including prenatal diagnosis, early intervention, education, medical, health, employment, aging and human rights. Down Syndrome International also promoted World Down Syndrome Day (March 21) as a day dedicated to people with Down Syndrome.

Global Down Syndrome http://www.globaldownsyndrome.org/

Provides fundraising, education and governmental advocacy for the Linda Crnic Institute for Down Syndrome. Resources available on the website include, information on research, medical care and facts on Down Syndrome.

International Down Syndrome Coalition: http://theidsc.org/

Dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. Offers support to parents who are new to the Down syndrome diagnosis by connecting parents to each other.

National Association for Down Syndrome http://www.nads.org/

NADS is the oldest organization in the United States serving individuals with Down syndrome and their families. Also provides families with information and resources that will enable them to access appropriate services and educates the public about Down syndrome.

National Down Syndrome Congress http://www.ndsccenter.org/

The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

National Down Syndrome Society http://www.ndss.org/

NDSS provides resources to new and expectant parents and offers a toll-free helpline and email services. NDSS also focuses on transitions , wellness and education