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

Facts and Statistics- Obsessive Compulsive Disorder (OCD)

Obsessive- Compulsive Disorder (OCD) is defined as a disorder that includes two core symptoms- obsessions and compulsions. According to the Census for Disease Control and Prevention (CDC), obsessions are defined by:

  • Thoughts, impulses, or images that occur over and over again. These thoughts, impulses or images are unwanted. They cause a lot of anxiety and stress.
  • The person who has these thoughts, impulses or images tries to ignore them or tries to make them go away.

Compulsions are defined as:

  • Repeated behaviors or thoughts over and over again or according to certain rules that must be followed exactly in order to make an obsession go away.
  • The person feels that the purpose of the behaviors or thoughts is to prevent or reduce distress or prevent some feared event or situation.

The following are facts and statistics on Obsessive Compulsive Disorder:

  • 1.2% of U.S. adults had OCD in the past year.
  • OCD was higher for females (1.8%) than males (0.5%).
  • Among adults with OCD, approximately one half (50.6%) had serious impairment
  • 34.8% of adults with OCD had moderate impairment
  • 14.6% had mild impairment.
  • OCD affects 2.2 million adults
  • The average onset is 19 with 25% of cases occurring by age 14
  • One-third of affected adults first experience symptoms in childhood
  •  17% of autistic people may specifically have OCD
  • Because of similar characteristics, it is often overlooked
  • It affects people of all races, ethnicities, and socioeconomic backgrounds
  • OCD is one of the top 20 causes of illness-related disability worldwide for individuals between 15 and 44 years of age
  • 1 in 40 adults are affected.
  • 1 in 100 children are affected
  • Other conditions may co-exist with OCD including anxiety, bipolar, ADHD, autism spectrum, Tourette syndrome, and major depressive disorder.
  • Worldwide, OCD is approximately 2% of the general population
  • OCD ranks 10th place among all diseases
  •  1 in every 200 children has the disorder 60 to 70% of OCD children improve significantly with therapy.
  • Many people still hide their OCD behaviors.
Beyond OCD.org
Healthy Place.org
National Institute of Mental Health

Facts and Statistics- Ataxia

Ataxia is a rare disorder that affects both children and adults. I was quite surprise to find that very little statistics have been conducted on ataxia. this may be due to the understanding that Ataxia is not a specific disorder, rather, a condition can cause ataxia including multiple sclerosis, head trauma, cerebral palsy and infections.

Ataxia affects a child’s coordination, balance and speech while some children are born with ataxia as a result of genetics, others develop it in a progressive matter. Signs and symptoms of Acute Cerebellar Ataxia include:

  • Frequent stumbling
  • Impaired coordination affecting arms or legs
  • Unsteady gait
  • Uncontrolled eye movement
  • Difficulty performing fine motor task
  • headaches

The following are facts and statistics on the Ataxia disorder:

  • It is a degenerative disease of the nervous system
  • Symptoms, often mimic being drunk in adults such as slurred speech
  • Age of symptom can vary from childhood to late adulthood
  • rare recessive genetic disorder
  • occurs between 1 out of 40,000 and 1 out of 100,000
  • The word ataxia refers to clumsiness or a loss of balance and coordination
  • The ataxia gene was first identified in 1993
  • Ataxia is inherited
  • Ataxia is a sign of an underlying disorder
  • It is caused by damage to different areas of the central nervous system
  • The most common symptom in children is an unsteady gait
  • In some cases, ataxia can present itself rapid while in others, it is progressive.
  • The most common cause of acute ataxia in children are excessive drug ingestion and drug intoxications
  • There are from 50 to 100 different types of Ataxia.

15 Facts About Cri Du Chat Syndrome

Cri-Du Chat (cat’s cry) is a rare genetic disorder that results when a piece of the 5p chromosome is deleted. The name is French for “cry of the cat,” referring to the high-pitched cat-life cry. Other characteristics include intellectual disability, hyperactivity, and delay development. below are some more facts on this rare disease.

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  • Cri du Chat is French for cat’s cry or crying cat
  • The syndrome gets its name from the infant cry which is similar to a meowing kitten
  • The cry is due to issues with the larynx and nervous system
  • About one third of children lose the cry by the age of 2 years.
  • It is also known as 5p- (5p minus)
  • The size of the deletion varies among affected individuals
  • Cri du chat syndrome is not inherited.
  • About 10 percent of people with cri du chat syndrome inherit it from an unaffected parent.
  • Is a chromosomal condition that results when a piece of chromosome 5 is missing
  • People diagnosed with cri du chat tend to have distinctive facial features
  • Occurs in an estimated 1 in 20,000 to 50,000 newborns
  • Cri du chat is found in  people of all ethnic backgrounds
  • It was first described by Jerome Lejeune in 1963
  • It is more common in females by a 4.3 ratio
  • It is a rare genetic disorder
  • In some cases, cri du chat syndrome may go undiagnosed
  • Children born with cri du chat syndrome are more likely to have developmental delays
  • The symptoms of cri du chat vary from person to person
  • Both children and adults with cri du chat are often seen as cheerful and friendly.

 

References

Genetic and Rare Diseases Information Center

National Organizations of Rare Diseases

Williams Syndrome- Facts and Statistics

Click here to download PDF article

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

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

 

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

ADHD- Facts and Statistics

Click here to download PDF version
Attention Deficit Hyperactivity Disorder (ADHD)  is a neurological disorder characterized by a pattern of inattention and/or hyperactivity-impulsivity that disrupts functioning in both children and adults
Facts and Statistics
  • ADHD is a condition characterized by inattentiveness, hyperactivity and impulsivity
  • It is one of the most common neurodevelopmental disorders of childhood
  • It is usually diagnosed in childhood and last into adulthood
  • People diagnosed with ADHD may have difficulty paying attention and or controlling impulsive behavior
  • 70% of people with ADHD in childhood will continue to have it in adolescence
  • 50% will continue into adulthood
  • ADHD is not caused by watching too much, parenting or having too much sugar
  • ADHD may be caused by genetics, brain injury or low birth weights
  • Is a highly genetic, brain-based syndrome that has to do with the brain regulation in executive functioning skills
Prevalence

UNITED STATES

Children & Adolescents

The 2016 National Survey of Children’s Health (NSCH) interviewed parents and reports the following ADHD prevalence data among children ages 2–17 (Danielson et al. 2018):

  • 6.1 million children (9.4 percent) have ever been diagnosed with ADHD. This includes:
    • About 388,000 young children ages 2-5 (or 2.4 percent in this age group)
    • 2.4 million school-age children ages 6-11 (or 9.6 percent in this age group)
    • 3.3 million adolescents ages 12-17 (or 13.6 percent in this age group)
  • 5.4 million children (8.4 percent) have a current diagnosis of ADHD. This includes:
    • About 335,000 young children ages 2-5 (or 2.1 percent in this age group)
    • 2.2 million school-age children ages 6-11 (or 8.9 percent in this age group)
    • 2.9 million adolescents ages 12-17 (or 11.9 percent in this age group)
  • Treatment used by children ages 2-7 with a current diagnosis of ADHD:
    • Two out three were taking medication (62 percent).
    • Less than half received behavioral treatment in the past year (46.7 percent).
    • Nearly one out of three received a combination of medication and behavioral treatment in the past year (31.7 percent).
    • Nearly one out of four had not received any treatment (23 percent).
  • Severity of ADHD among children ages 2-17:
    • 14.5 percent had severe ADHD
    • 43.7 percent had moderate ADHD
    • 41.8 percent had mild ADHD
  • Co-occuring conditions (children ages 2-17):
    • Two out of three children (63.8 percent) had at least one co-occuring condition.
    • Half of all children (51.5 percent) had behavioral or conduct problems.
    • One out of three children (32.7 percent) had anxiety problems.
    • One out of six children (16.8 percent) had depression.
    • About one out of seven children (13.7 percent) had autism spectrum disorder.
    • About one out of 80 children (1.2 percent) had Tourette syndrome.
    • One in a hundred adolescents (1 percent) had a substance abuse disorder.
  • By race or ethnicity (children ages 2-17):
    • 8.4 percent White
    • 10.7 percent Black
    • 6.6 percent Other
    • 6.0 percent Hispanic/Latino
    • 9.1 percent Non-Hispanic/Latino

Adults with ADHD

  • 4.4 percent of the adult US population has ADHD, but less than 20 percent of these individuals seek help for it.
  • 41.3% of adult ADHD cases are considered severe.
  • During their lifetimes, 12.9 percent of men will be diagnosed with ADHD, compared to 4.9 percent of women.
  • About 30 to 60 percent of patients diagnosed with ADHD in childhood continue to be affected into adulthood.
  • Adults with ADHD are 5 times more likely to speed
  • Adults with ADHD are nearly 50 percent more likely to be in a serious car crash.
  • Having ADHD makes you 3 times more likely to be dead by the age of 45
  • Anxiety disorders occur in 50 percent of adults with ADHD.
Reference

Additude Magazine

CHADD- National Resource Center on ADHD