Early Death in Those with Autism Spectrum Disorder

Published by: Psychology Today
Written by: Michael A. Ellis

Two recent studies will undoubtedly shock individuals and families affected by autism spectrum disorder (ASD). These studies show a much earlier age of death in those with ASD as compared with the general population.

One study, published in the American Journal of Public Health in April 2017, finds the life expectancy in the United States of those with ASD to be 36 years old as compared to 72 years old for the general population.  They note that those with ASD are 40 times more likely to die from various injuries.  About 28 percent of those with ASD die of an injury.  Most of these are suffocation, asphyxiation, and drowning.  The risk of drowning peaks at about 5 to 7 years old.  As 50 percent of those with ASD wander, water safety and swim lessons are a must.  GPS trackers are also available for purchase should a child wander or get lost.  This makes finding the child or adult much easier and faster. Click here to read the rest of the story

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Epilepsy Links and Resources

Epilepsy is a neurological disorder which causes seizures through electrical impulses occurring in the brain. It is the fourth most common neurological disorder. Epilepsy affects 50 million people worldwide. In the U.S., 1 out of 26 people are affected. Want to learn more? click on the articles below.

37 helpful epilepsy resources

Apps for tracking seizure

Benign Roladric Epilepsy

Epilepsy Facts

Epilepsy driving and state regulations

Epilepsy-General Information

Lennox-Gastaut Syndrome

Ohtahara Syndrome

November is epilepsy month

West Syndrome

What you need to know about Dravet Syndrome

When an employee has a seizure

What to do when someone has a seizure

 

 

 

Cerebral Palsy Organizations You Should Know About

Cerebral Palsy describes a group of permanent disorders of the development of movement and posture. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication and behavior, epilepsy, and by secondary musculoskeletal problems.

According to the Centers for Disease Control and Prevention (CDC), cerebral palsy is the most common motor disability in childhood caused by damage to the developing brain that affects a person’s ability to control his or her muscles. CDC estimates that about 1 in 323 children are diagnosed with cerebral palsy annual.

The following organizations provide resources on their websites including fact sheets, resources and information:

Cerebral Palsy Foundation

Funds cerebral palsy research in the United States, (CPF) promotes the delivery of current research, best practices and technology to people with cerebral palsy and their support system. The mission includes transforming lives through research, innovation and collaboration.

Children’s Hemiplegia and Stroke Association

Helps children who have survived an early brain injury that results in hemiplegia (weakness on one side of the body).

Make LemonAide Foundation

The Make Lemon Aide Foundation is a non-profit organization designed to improve the lives of people with cerebral palsy by raising awareness, funding research and training therapist.

Reaching For The Stars

Founded in 2005, RFTS is the largest pediatric cerebral palsy non-profit foundation in the world led by parents with a focus on the prevention, treatment and cure of cerebral palsy

United Cerebral Palsy

UCP educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP provides services and support to more than 176,000 children and adults through its 68 affiliates around the country.

CP Daily Living

An educational resource website and Facebook page designed to give families and caregivers a central place for practical information and resources.

Cerebral Palsy Alliance

A non-profit organization based in Australia. Provides services to help children and adults living with neurological and physical disabilities.

National Institute of Neurological Disorders and Stroke

NIDS mission is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disorder. The website provides patient and caregiver education on cerebral palsy including an informational page.

What is a Developmental Disability?

March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobilityability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

Here are some examples of a developmental disability:

Does everyone with a disability also have a developmental disability?

The answer is no. there are people with disabilities such as epilepsy and cerebral palsy simply have a disability based on the criteria listed above. However, many people with developmental disabilities quite often have a combination of disabilities. For example a child with autism may also have seizures and an intellectual disability or an adult may have cerebral palsy, intellectual disability and epilepsy. In addition there are many people in the spectrum of autism who also have ADHD and so forth.

So what’s the difference between an intellectual disability and a developmental disability?

A person with an intellectual disability falls under the category of a developmental disability meaning you can have an intellectual disability and a developmental disability. check here for the definition of an intellectual disability, you will see they are quite similar. Below is an infographic created by Centers on Disease Control:

An Infographic on Developmental Disabilities.

 

 

Stress Is An Added Dimension For Those With Disabilities

Stress Is an Added Dimension for Those with Disabilities
Written by: Jessica Grono
Published by: Cerebral Palsy News Today

A common question many people ask of us who have disabilities is, “How do you do it every day?” Or, my favorite comment, “I don’t know how you do it! I couldn’t handle doing what you go through.” My initial reaction is to feel a bit offended and annoyed because, really, what choice do I have? I am just living my life as anyone would and making the best of it. But I forget to ask myself if I am living my life as anyone else would. Read the rest of the story here.

April Special Needs Article Links

Welcome to the April article links. These are articles that I tweeted and or received from viewers during the month of April on special needs and developmental disability topics. Enjoy!

5 practical ways to help adults with autism gain employment (Autism Parenting Magazine)

10 things I wish the entertainment industry understood about autism (The Mighty)

20 tips on employment for students with disabilities (The Inclusion Lab)

Autism and parent fatigue (Autism Awareness Centre, Inc.)

Grandparents may be first to spot autism in a child (NHS)

How animals can help autistic children  (The Conversation)

Making art galleries autism friendly (A.N)

Moms work to empower children and adults with autism (ABC News)

New guideline tackles sudden unexpected death in epilepsy (Neurology Advisor)

Robots helping to teach students with autism in West Vancouver– (Global News)

Stop telling me I don’t look autistic (Metro)

Teaching Important life skills to kids with autism (Nurse Barb’s Daily Dose)

The innovating creative superpower of ADHD (Yes Magazine)

What teachers should know about ADHD and ASD (Edutopia)

When a child with autism gets lost (HuffPost)

Developmental Disability Awareness Ribbons

awareness.header

Ribbons have long been used as a way to bring awareness and raise consciousness for a cause. Ribbons and disability awareness has evolved from brining awareness to various disability topics such as sensitivity, core information, inclusion and advocacy to including information in various formats including resources, activities and print information.

Below, you will find awareness ribbons for specific disabilities and the months they are recognized including the links. If you noticed that I missed any, please let me know.

Awareness Ribbons

Autism Awareness Ribbon

Autism

Burgundy  Awareness Ribbon

burgundy-awareness-ribbon Sickle Cell Anemia , Williams Syndrome

Purple Awareness Ribbon

epilepsy ribbonEpilepsy

Down Syndrome

down syndrome ribbonDown Syndrome

Lime Green Ribbon

lime awarenss ribbon Muscular Dystrophy and Spinal Cord Injuries

 

Orange Awareness Ribbon

adhd.ribbonADHD, Multiple Sclerosis, and Sensory Processing Disorder

Lavender Awareness Ribbon
Rett Syndrome

Blue Awareness Ribbon

hydrapany.ribbonApraxia, Cri Du Chat, Hydrocephalus

Light Blue Awareness Ribbon

tuberous.scherous.ribbonTrisomy 18, DiGeorge Syndrome

 Observance  Awareness Months

March

 Trisomy18

Multiple Sclerosis

Cerebral Palsy

Developmental Disabilities

April

Autism

Auditory Processing Disorder

May

Apraxia

Cri Du Chat

Cystic Fibrosis

Williams Syndrome

June

Dravet Syndrome Day

July

Fragile X Syndrome

National Craniofacial Awareness and Prevention Month

September

Duchenne Muscular Dystrophy Day

Hydrocephalus

Sickle Cell Anemia

Spinal Cord Injuries

October

ADD/ADHD

Down Syndrome

Rett Syndrome

Sensory Processing Disorder

November

DiGeorge Syndrome

Epilepsy

Updated: October 2, 2018

 

 

 

 

 

 

 

 

 

 

 

 

Thanksgiving and Mealtime Precautions

mealtime_thanksgiving_logo

Thanksgiving is the day set aside in the United States and Canada as a day of pausing to reflect all that we are thankful for by connecting with friends and family over good food. It is also the day of taking special precautions when serving people with developmental disabilities.

Aspiration is a huge risk during the holiday season. Factors that place people at risk for aspiration includes the following:

  • Being fed by someone else
  • Poor chewing or swallowing skills
  • Weak or absent coughing/gagging reflexes which is common in people with cerebral palsy or muscular dystrophy
  • Eating to quickly
  • Inappropriate fluid consistency
  • Inappropriate food texture

For children and adults with autism, Thanksgiving may be a challenge for a variety of reasons:

  • Sensory and emotional overload with large groups
  • Picky eaters
  • Difficulty with various textures of food

To help you mange Thanksgiving with ease, click on the articles below:

8 tips for managing Thanksgiving with children with autism

Autism and Thanksgiving: How to cope with the feasting and hubbub

Feeding kids with sensory processing disorders

Preparing for Thanksgiving on the autism spectrum

Swallowing problems? What to do about Thanksgiving

Thanksgiving dinner ideas for speech therapy activities

Tips for Navigating Thanksgiving on the Spectrum