Data and Statistics- Fetal Alcohol Spectrum Disorders (FASD)

  • Fetal alcohol disorders range from mild intellectual and behavioral problems to extreme disorders that lead to profound disabilities or premature death.
  • FAS are not heredity: they are 100 percent preventable the sole cause is prenatal alcohol exposure.
  • Of the children heavily exposed to alcohol before birth, about 40 percent are estimated to exhibit fetal alcohol disorders, with 4 percent affected by full blown fetal alcohol syndrome.
  • Women who give birth to a child with FAS are 800 times more likely to give birth to subsequent children with the syndrome than are women who have never given birth to a child with the syndrome.
  • Each year, there are four times as many infants born with fetal alcohol disorders as there are infants born with muscular dystrophy, spina bifida and Down syndrome combined.
  • 15 out of 100 women of childbearing age do not know that drinking alcohol during pregnancy is dangerous.
  • FASD affects about 40,000 newborns each year
  • A survey of pediatrician reported in the journal Pediatrics revealed that only 13 percent routinely discussed the risk of drinking during pregnancy with their adolescent patients.

  • According to the Center for Substance Abuse Prevention, 1 in 9 pregnant women binge drink during the first trimester.
  • FASD are 100% incurable
  • 60% of individuals with FASD find themselves in legal trouble at some point in their lives.
  • There is a high prevalence of epilepsy (5.9%) in individuals with FASD compared with individuals who did not have the disorder.
  • 94% of individuals heavily exposed to alcohol in the womb are diagnosed with ADHD
  • It is estimated a lifetime cost for one individual with FASD is 2 million
  • 50% of adults with FASD were clinically depressed

SEPTEMBER IS FETAL ALCOHOL SPECTRUM DISORDER AWARENESS MONTH

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Williams Syndrome- Facts and Statistics

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May is Williams Syndrome Awareness Month. It is a rare genetic condition that affects over 1 in 10,000 people worldwide. If you teach in a special needs classroom or work in an adult day habilitation program, it is likely you have experienced working and teaching a student or individual diagnosed with Williams Syndrome. Below you will find some interesting facts and statistics on the disorder:

  • It is a genetic condition that is present a birth.
  • It is a developmental disorder
  • Tend to have a mild or moderate intellectual disability.
  • It is also known as Beuren Syndrome and Williams-Beuren Syndrome.
  • The symptoms were first described by John C.P. Williams in 1961.
  • A year later, German Physician, A.J. Beuren described three new incidents of patients with similar facial features.
  • It is caused by the spontaneous deletion of 26-28 genes on Chromosome #7
  • The deletion is caused by either the sperm or the egg.
  • The deletion is present at the time of conception
  • The most common symptoms of Williams Syndrome includes unusual facial features and heart defects.
  • The diagnosis is typically confirmed after identifying facial features and genetic testing.
  • An individual with Williams Syndrome has a 50% chance of passing the disorder on to their children.
  • Williams Syndrome affects 1 in 10,000 people worldwide.
  • An estimated 20,000 to 30,000 people in the United States are affected.
  • It occurs in both males and females equally
  • It is found in every culture
  • Individuals with Williams Syndrome tend to be overly friendly.
  • People with Williams Syndrome often have difficulty with visual-spatial tasks
  • Congenital heart defects (CHD) occur in approximately 75 percent of children
  • By the age of 30, the majority of individuals with Williams Syndrome have pre-diabetes or diabetes.

 

 

References

Genetics Home Reference

National Organizations for Rare Diseases

William Syndrome Association

Autism Facts and Statistics

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.

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Prevalence

About 1 in 40 children has been identified with autism spectrum disorder (ASD).

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

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

ASD is 4 times more common among boys than girls.

Studies in Asia, Europe, and North American have idendified 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.


Source: Centers for Disease Control and Prevention

Facts

Children and adults with Autism have significant problems in socializing with others, emotions, intense preoccupation with one or two topics, repetitive routines and motor skills.

Tend to be sensitive to sensations of sound, light or touch.

It is a common myth that autistic children can perform amazing skills such as memorizing birthdays and telephone numbers.

30% of autistic children have a seizure disorder

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.

Between 60% and 80% of children with ASD have a sleep-related disorder

Females tend to be more likely to show accompany intellectual disabilities.

Studies show that parents notice a developmental problem before the child’s first birthday

Lorna Wing, a psychiatrist and mother of a child with autism termed the word Autism Spectrum to describe a concept of complexities rather than a straight line from severe to mild.

Victor Lotter was the first person to  measure the prevalence of autism in a population.

Autistic Women and Girls

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 casuing 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.

Image result for wandering autism

 

Reference

Centers for Disease Control and Prevention (CDC)

National Autism Association

Spectrum News

Developmental Disability Facts and Statistics

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

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  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

 

Resources

National Institute of Health

10 Important Facts On Trisomy 18

Today is National Trisomy Awareness Day. Below are 10 important facts on Trisomy 18.

  • It is also known as Edwards Syndrome
  • It is a condition caused by an error in cell division
  • An extra chromosome in 18 develops
  • Occurs in 1 out of every 2500 pregnancies in the United States
  • It is 1 in 6000 live births
  • Only 50% of babies who are carried to term will be born alive
  • Children are often born with heart defects
  • Features include a small head, small jaw, clenched fists and severe intellectual disabilities
  • It is named after John Hilton Edwards, who first described the syndrome in 1960
  • It affects different organ systems

 

25 Developmental Disability Links and Resources You Should Know About

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. Mobility-ability 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

The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.

22q11.2 Deletion Syndrome

27 things to know about Fragile X Syndrome

ADHD- facts and statistics

Angelman Syndrome

Angelman syndrome resources

Cri Du Chat Resources

Developmental disability acronyms you should know 

Developmental disability awareness ribbons

Down syndrome-facts and statistics

Down syndrome timeline

Duchenne Muscular Dystrophy

Early Intervention- Resources and Information

Edward Syndrome Resources

Global developmental delays

Intellectual Disability Resources

Over 30 online resources on Rett syndrome

Pervasive DD-NOS

Prader Willi Syndrome Resources

Resources for teaching students with Down syndrome

Ring Chromosome 22 Resources

Teaching self-regulation and autism spectrum disorder

Things to know about Angelman Syndrome

Turner Syndrome Characteristics

What is Prader Willi Syndrome?

William-Beuren Syndrome Resources

Intellectual Disabilities And Epilepsy

According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and affects people of all ages. In fact, 1 in 26 people have seizures and while people who are diagnosed with epilepsy may have no other problems, this is not the case for children and adults with an intellectual and developmental disability where the rates are much higher.

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It is estimated that 30% of children with epilepsy also have another type of disability. Some studies show that children with an intellectual disability and cerebral palsy, had a 35% chance of developing epilepsy, children with an intellectual disability alone had an 8% chance and children with a brain injury occurring after birth stood a 75% chance of developing epilepsy. Statistically, the risky of a child with a developmental disability experiencing an unprovoked seizure by age 5 is 4 times likely than the general population. It is estimated 1.8% of U.S. adults have epilepsy compared to 22% among people with intellectual disabilities.

People with intellectual disabilities tend to also have worse prognosis with adults having a higher rate of death including Sudden Unexplained Death In Epilepsy (SUDEP).

Epilepsy

Epilepsy is a chronic disorder with recurrent unprovoked seizures. According tot he National Institute of Neurological Disorders and Stroke (NINDS), epilepsys are a spectrum of brain disorders ranging from severe, life-threatening to ones that are more benign. The International League Against Epilepsy created a new definition of epilepsy. A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two provoked (or reflex) seizures occurring greater than 24 hours apart.
  2. One Unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome

A seizure is defined as an event and epilepsy is the disease involving recurrent unprovoked seizures.

Intellectual Disability

According to DSM-5, an intellectual disability is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual social, and practical domains including deficits in intellectual functions such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experiences.  The severity levels range from mild to profound.

Although there is a high relationship between epilepsy and an intellectual disability, little research has been conducted on safe prescribing practices of an antiepileptic drugs for people with intellectual disabilities. What is known about epilepsy and an intellectual disability is that more severe disabilities are typically caused by damage to the brain

Why is it important to discuss?

Given the large number of people with an intellectual disability and epilepsy, treatment may be more complicated due to multiple impairments including people with a diagnosis of autism, intellectual disability and epilepsy. More research needs to occur which will help to reduce morbidity rates and help to develop accurate guidelines.

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

Spina Bifida- Facts and Statistics

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October is Spina Bifida Awareness Month. Spina Bifida is a birth defect that affects the spine and the spinal cord. The membranes surrounding the spinal cord do not close properly.

Facts and Statistics
  • Each year, about 1,500 babies are born with spina bifida.
  • There is no known cause
  • Accumulation of fluid in the brain affects 70% of children.
  • 40% of shunts fail or become in affected and need to be changed within a year.
  • It can happen anywhere along the spine if the neural tube does not close all the way.
  • Spina Bifida might cause physical and intellectual disabilities that range from mild to severe depending on the size and location of the opening in the spine.
  • Myelomeningocele is the most serious type of spina bifida.
  • Spina Bifida can be diagnosed during pregnancy or after the baby is born.
  • Some people with Spina Bifida may never experience symptoms
  • Spina Bifida occurs between the 3rd and 4th week of pregnancy.
  • Children with Spina Bifida may have difficulty with math, reading comprehension and learning.
  • Common challenges to learning include, fine and gross motor skills, spatial orientation, communication difficulties and attention and memory.
  • Some children with Spina Bifida also have attention deficit hyperactivity disorder (ADHD).
  • Hispanic women have the highest rate of having a child affected by spina bifida, when compared with non-Hispanic white and non-Hispanic black women. Data from 12 state-based birth defects tracking programs from 1997-2007 were used to estimate the total number of pregnancies affected by spina bifida compared to the total number of live births (also called the prevalence of spina bifida) for each racial/ethnic group:
    • Hispanic: 3.80 per 10,000 live births
    • Non-Hispanic black or African-American: 2.73 per 10,000 live births
    • Non-Hispanic white: 3.09 per 10,000 live births
Resources

March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-997-4488; 888-MODIMES (663-4637)
Fax: 914-428-8203

Spina Bifida Association
4590 MacArthur Blvd. NW
Suite 250
Washington, DC 20007-4266
sbaa@sbaa.org
http://www.spinabifidaassociation.org
Tel: 202-944-3285; 800-621-3141
Fax: 202-944-3295

References

Centers for Disease Control and Prevention

Children’s Hospital of Philadelphia 

Dyslexia- Facts and Statistics

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Dyslexia is a learning disorder which makes it difficult for children and adults to read and learn new words.
Facts and Statistics
  • It is estimated that 1 in 10 people have dyslexia
  • Over 40 million American Adults are dyslexic – and only 2 million know it
  • Dyslexia is not tied to IQ – Einstein was dyslexic and had an estimated IQ of 160
  • Dyslexia in not just about getting letters or numbers mixed up or out of order
  • 80% of people associate dyslexia with some form of retardation – this is not true
  • Dyslexia is a language-based learning disability or disorder that includes poor word reading, word decoding, oral reading fluency and spelling
  • Dyslexia occurs in people of all backgrounds and intellectual levels
  • Dyslexia has nothing to do with not working hard enough
  • 20% of school-aged children in the US are dyslexic
  • With appropriate teaching methods, dyslexia can learn successfully
  • Over 50% of NASA employees are dyslexic
  • Dyslexia runs in families; parents with dyslexia are very likely to have children with dyslexia
  • Dyslexics may struggle with organizational skills, planning and prioritizing, keeping time, concentrating with background noise.

Prevalence

About 15-20 percent of the U.S. population has a learning disability.

  • 70-80% of people with poor reading skills, are likely dyslexic.
  • One in five students, or 15-20% of the population, has a language based learning disability. Dyslexia is the most common of the language based learning disabilities.
  • Nearly the same percentage of males and females have dyslexia.
  • Nearly the same percentage of people from different ethnic and socioeconomic backgrounds have dyslexia.
  • Percentages of children at risk for reading failure are much higher in high poverty, language-minority populations who attend ineffective schools.
  • In minority and high poverty schools, 70-80% of children have inadequate reading skills.
  • According to the National Assessment of Educational Progress (NAEP), 38% of all fourth grade students are “below basic” reading skills. They are at or below the 40th percentile for their age group.
  • Nationwide 20% of the elementary school population is struggling with reading.
  • National Center for Education statistics, 5% of all adults are “non-literate”.
  • 20-25% of all adults can only read at the lowest level.
  • 62% of non readers dropped out of high school.
  • 80% of children with an IEP have reading difficulty and 85% of those are Dyslexic.
  • 30% of children with Dyslexia also have at least a mild form of AD/HD.

 

Reference

Austin Learning Solutions

Dyslexia Center of Utah

Encyclopedia of Children’s Health 

 

October is Dyslexia Awareness Month