April 2 is World Autism Day

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

The United Nations proclaims April 2 as World Autism Day in an effort to recognize and promote awareness by bringing worldwide attention to issues facing people with autism.

Worldwide 1 in 160 children is autistic

The prevalence of autism in Africa is unknown

1 percent of the world population is diagnosed with autism spectrum disorder

Prevalence in the United States is estimated at 1 in 68 births

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

More than 3.3 million Americans live with autism spectrum disorder

Autism is the fastest growing developmental disability

Autism services cost the United States citizens 236-262 billion annually

Autism costs a family $60,000 a year on an average

Boys are nearly five times more likely than girls to have autism

Autism generally appears before the age of 3

40% of children with autism do not speak

25-30% of children with autism have some words at 12 to 18 months, and then lose them.

Studies in Asia, Europe, and North American have identified individuals with ASD  with an average prevalence of between 1% and 2%.

About 1 in 6 children diagnosed with autism also have a developmental disability.

Parents who have a child with ASD have a 2%-18% chance of having a second child diagnosed with autism

Almost half (44%) of children diagnosed with ASD has average to above average intellectual ability.

ASD commonly co-occurs with other developmental, psychiatric, neurological, chromosomal and genetic diagnoses.

Almost half (44%) of children with autism have average to above average intellectual ability.

Autism is reported to occur in all racial, ethnic and socioeconomic groups.

The UK estimate is 1 in 100 are diagnosed with autism

30-50% of individuals with autism also have seizures.

Autism Spectrum Disorders refers to a group of complex neurodevelopment disorders which includes repetitive patterns of behavior and difficulties with social communication, interaction, sensory processing and motor issues.

.In 1943, Leo Kanner dissociated autism from schizophrenia.

Autism is more common than childhood cancer, diabetes and AIDS combined.

Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

Stimming

  • It is also prevalent among people on the autism spectrum.
  • In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
  • Stimming is often used as a means to self-regulate, self-calm and for self-expression.
  • The movements are repetitive and are used to self-stimulate the 7 senses.
  • It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
  • One of the theories behind stimming is that beta-endorphrins are released in the brain causing an euphoric feeling which is generally a response to pain.
  • Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
  • Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.

Wandering Statistics

    • Nearly half of children with autism engage in wandering behavior
    • Increased risks are associated with autism severity
    • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
    • Half of families report they have never received advice or guidance about elopement from a professional
    • Accidental drowning accounts for 71% of lethal outcomes, followed by traffic injuries at 18%
    • Other dangers include dehydration; heat stroke; hypothermia; falls; physical restraint; encounters with strangers
    • Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

 

4 Ways to Utilize Rare Disease Foundation Websites as Educators

According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Although rare, special education teachers and habilitation specialist are more than likely to have a student or an individual diagnosed with a rare disease disorder. In most cases the person is also likely to have an intellectual developmental disorder, which qualified the student to have an iep or an adult attending a day program to qualify for a Medicaid Waiver.

The foundation website’s provide information that can help you understand the rare disease and the impact it has on the student. Further information provides current research on the disorder as well.

The websites can help you in the following ways:

  1. Provides detailed diagnosis information including clinical features, characteristics, and frequently asked questions.
  2. Facebook groups are available where you can join a group to ask questions and share stories.
  3. Printed material included factsheets, booklets, newsletters and ebooks.
  4. Educational information includes webinars, video’s conferences and seminars.

 

The following are links to rare disease website:

Aicardi Syndrome Foundation– Incorporated in 1991, the foundation is dedicated to provided assistance to those affected and their families.

Angleman Syndrome Foundation- Commitment to research to discover Angelman Syndrome treatment and a cure and supporting families.

CDKL5 Deficiency Disorder(International Foundation for CDKL5 Research)- Committed to funding research, both scientific and clinical, raising awareness. Also provides support to newly diagnosed through adulthood..

Cerebral Palsy Foundation– Collaborates with researchers to better understand the disorder. The website offers information through factsheets and a video library.

Chromosome 22 Ring- (Chromosome 22 Central)- Includes information and support for all Chromosome 22 disorders including research, support and events.

Chromosome 22q11.2 Deletion- (The International 22q11.2 Foundation) Provides resources and connections to experts regarding medical, psychosocial and educational needs. The foundation also organizes awareness events, educational conferences and supports legislative advocacy.

Cornelia de Lange Syndrome Foundation– Provides a host of services including information to families, professionals, and researchers.

Dravet Syndrome– A non-profit organization dedicated to raising funds for Dravet Syndrome. Also provides educational videos and webinars on website.

Duchenne Muscular Dystrophy-(Cure Duchenne)– The mission is to improve the lives of everyone affected by Duchenne through accelerating researchers to find the cure, improve care and empowering the Duchenne community.

Fragile X Syndrome Foundation- Serves all those living with Fragile X syndrome with a focus on community, awareness, and research in the pursuit of treatment and a cure. The website includes information on Fragile X and the relationship with Autism. The website also provides a free e-book on adults with Fragile X Syndrome.

Hydrocephalus Association- Provides resources to families, communities, professionals and researchers. Sponsors a yearly educational days and advocacy.

Kabuki Syndrome- The mission is to drive research efforts that show promise to treat, prevent or cure Kabuki syndrome through fundraising, knowledge-sharing and collaboration with researchers

Lowe Syndrome Association– The mission is to improve the lives of persons with Lowe syndrome and their families through fostering communication, providing education and supporting research.

Prader Willi Syndrome Association– The mission is to enhance the quality of life and empower of those affected by Prader-Willi Syndrome. The website includes educational resources such as webinars and a resource library.

Rett Syndrome Organization– The mission is to empower families with information, knowledge and advocacy and to raise awareness.

Sickle Cell Disease Association of America– The mission is to advocate for people affected by sickle cell conditions and empower community-based organization to maximize quality of life and raise public consciousness while searching for a cure.

Trisomy 18 Foundation- Provides information and educational resources to families, medical professionals and the general public.

Turner Syndrome Foundation- Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care.

Williams Syndrome Association– Founded by families of individuals with Williams syndrome to provide resources to doctors, researchers, and educators

Angleman Syndrome and Adulthood

Angelman syndrome is a genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities, epilepsy, short attention span, hyperactivity, hand flapping and speech impairments. It is a rare disorder that affects 1 in 12,000 to 20,000 a year. there are less than 200,000 cases a year and affects all ethnicities and sexes equally.

Typically, there is a severe developmental delay and learning disability as well as near absence of speech and ataxia including ataxia including jerky movements of the arms and legs. People with Angelman syndrome generally have a happy demeanor and an inappropriate laughter.

Life expectancy appears to be normal. As people with Angelman syndrome age, scoliosis tends to worsen and for many people born with epilepsy, there are cases where seizures stop, however, they tend to return as the person gets older.

 

Due to cognitive and medical needs, a person with Angelman syndrome will always require support. Most people with Angelman syndrome attend a day habilitation setting. Support should include

  • staff trained on identifying seizures and providing assistance
  • programs that support the person’s short attention span
  • evaluation for a communication device or a means to communicate
  • support for self-injurious behavior

The following are resources and articles on Angelman syndrome and adulthood

Angelman Syndrome and Obesity (Angelman Syndrome) A 2017 study reporting on a third of Angelman syndrome patients were overweight or obese.

Angelman Syndrome in Adults– (Angelman Syndrome News). An article that describes signs and symptoms of individuals with Angelman Syndrome as they approach adulthood

Anxiety in Angelman Syndrome (Angelman Syndrome News). A topic on anxiety which is commonly observed in individuals with Angelman syndrome including information on triggers and ways to manage anxiety.

AS in Adulthood (AngelmanUKorg). A website describing the transition to adulthood and issues affecting people with Angelman syndrome.

Dental Problems in Angelman Syndrome (Angelman Syndrome News). Information on how people with Angelman Syndrome may be affected and possible treatment plans.

Transitioning to Adulthood Checklist. Created by the Angelman Syndrome Foundation, provides a 4-page checklist resource for students preparing to transition out of school.

Teaching Students with Feeding Tubes: What You Need To Know

If you work in a special education class or a day habilitation setting, more than likely you are teaching a student or an individual with complex needs including the use of a feeding tube.

February 8-12 is recognized as Feeding Tube Awareness Month which is a great opportunity to provide information on tube feeding in an educational setting.  According to the Tube Feeding Awareness Foundation, there are over 300 conditions that require students and individuals to receive nutritional support through tube feeding.

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent .

Reasons to use a feeding tube
The student or individual may have a swallowing disorder or dysphasia. This means there is an increase risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.
Types of Feeding Tubes

Gatro Feeding Tube

The gastrostomy tube (G tube) is placed through the skin into the stomach. The stomach and the skin usually heal in 5-7 days. This type of tube is generally used in people with developmental disabilities for long term feeding.

Nasogastric Feeding Tube

The nasogastric (NG tube)  is inserted through the nose, into the swallowing tube and into the stomach. The NG tube is typically used in the hospital to drain fluid from the stomach for short term tube feeding.

Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

The following are articles on IEP and Accommodations:

IEP/Accommodations

Going to school with a feeding tube- http://www.tubefed.com

Accommodations and supports for children with pediatric feeding disorders- Kids First Collaborative

School-based accommodations and supports– Feeding Matters

Tube feeding at school: 8 tips to prepare your child and school staff– Shield Healthcare

Signs and Symptoms of Issues related to a g-tube

Complications due to tube feeding may include:

  • constipation
  • dehydration
  • diarrhea
  • infections
  • nausea/vomiting

Aspiration

Aspiration can be caused by:

  • reflux of stomach contents up into the throat
  • weak cough, or gag reflux
  • the feeding tube is not in place
  • delayed stomach emptying
  • The head is not raised properly.

Students should be observed for aspiration during feeding. The following are signs and symptoms of aspiration:

  1. Choking or coughing while feeding
  2. Stopping breathing while feeding
  3. Faster breathing while feeding
  4. Increased blood pressure, heart rate and decreased oxygen saturation.

The following are articles on signs and symptoms of aspiration during feeding

Aspiration in Children

How to Prevent Aspiration

Life with Aspiration and a Feeding Tube

Pediatric Aspiration Syndromes

Tube Feeding Aspiration

Resources

Book Review: My Belly Has Two Buttons: A Tubie Story

Tube Feeding Awareness Foundation

2021 Special Needs Awareness Observance Calendar

Download printable here: 2021 Special Needs Awareness Observance Calendar
Did you know that 1 in 6 or 15% of  children aged 3 through 17 have one or more developmental disabilities? Or that according to the World Health Organization (WHO) that over a billion people live with some form of disability? This means that nearly 1 in 7 people on Earth have some form of a disability. For this reason, disability awareness and acceptance is more important now than ever before.

What is the Purpose of Disability Awareness?

Disability awareness serves many purposes including informing and educating people on a certain cause.  In some cases organizations and agencies use it as part of their annual campaign in an effort to bring awareness and raise money for their cause. Employers often conduct trainings on disability awareness as an effort to educate employees and to decrease bullying in the workplace. Disability awareness also can be used to address myths, misconceptions and the realities of having a disability.  Ribbons are also used that are specific to awareness activities. Through disability awareness campaigns it is hoped that people learn and develop a greater understanding of those with a disability. Annual awareness observances are sponsored by federal, health and non-profit organizations. In some cases observances are worldwide including World Autism Awareness Day or World Cerebral Palsy Day.

Types of Awareness Campaigns

Awareness campaigns fall under three categories:

  • Day- this is often held on the same day each year regardless of the day it falls under. There are cases where an awareness day falls on a specific day such as the last Thursday of a month.
  • Week – The dates dates change and vary based on the week. In some cases, awareness activities are held on the first week of the month to the fourth week of the month
  • Month- activities and awareness celebrations are held throughout the month.
The 2021 calendar includes major special needs awareness days, weeks, and months. Most websites include awareness toolkits, promotional material and fact sheets. This page focuses on awareness activities that impact people with intellectual and developmental disabilities. Click on the month below to go to a specific month.
January /February/March/ April/ May/June/July/September/October/November/December

January     

Louis Braille

                                             

January (Month)

National Birth  Defects Month

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

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February

February (Month)

Turner Syndrome Awareness Month

February (Week)

February 7-14 Congenital Heart Defect Awareness Week

February 8-12 Feeding Tube Awareness

February (Day)

February 15- International Angelman Day

February 28- Rare Disease Day

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March

March (Month)

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March (Week)

March 21-27- Poison Prevention Week

March (Day)

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

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April

April (Day)

April 2- World Autism Awareness Day 

April 7- Paraprofessional Appreciation Day

May

Better Hearing and Speech Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

National Osteoporosis Awareness and Prevention Month

National Mobility Awareness Month

Prader Willi Syndrome Awareness Month

Williams Syndrome Awareness Month

May (Week)

May 5-12- Cri du Chat Awareness Week

May (Day)

May 1- Global Developmental Delay Day

May 5- World Asthma Day

May 14- Apraxia Awareness Day

May 19- National Schizencephaly Awareness Day

May 15- Tuberous Sclerosis Global Awareness Day

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June

June (Month)

Aphasia Awareness Month

Tourette Syndrome Awareness Month

June (Week)

Helen Keller Deaf-Blind Awareness Week (Last Sunday in June)

June (Day)

June 7- Tourette Syndrome Awareness Day

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

 

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July

July (Month)

National Cleft and Craniofacial Awareness and Prevention Month

National Fragile X Syndrome Awareness Month

July (Day)

July 18- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disability Act Day

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September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Cortical Visual Impairment (CVI) Awareness Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

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October

ADHD Awareness Month

Disability History Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October (Day)

October 6- World Cerebral Palsy Day

October 15- White Cane Awareness Day

October (Week)

October 13-19 Invisible Disabilities Week

Rett Syndrome Awareness Month

Spinal Bifida Awareness Month

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November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

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December

December 3- International Day of Persons with Disabilities

December 1-7- Infantile Spasm

Updated 1/5/2021