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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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

Strategies In Training Autistic Employees

Researchers estimate around 50,000 young people with autism turns 18 every year. Is your organization read to train these new employees?

Click here to download copy of article

What is Autistic Spectrum Disorder?

Autism Spectrum Disorder is a neurological disorder that includes a wide range (spectrum) of skills, symptoms and levels of support. Although no two people are alike, characteristics may include ongoing challenges with social skills that include difficulty and interacting with others. For those on the higher end of the spectrum, characteristics may include:

  • ·         A normal to high intelligence and good verbal skills
  • ·         Trouble understanding what someone else is thinking or feeling
  • ·         Difficulty understanding non-verbal cues
  • ·         May suffer from anxiety or depression
  • ·         Strong long-term memory
  • ·         May have executive functioning difficulties 
  • ·         Being highly creative
  • ·         A high sense of justice and fairness

It is important to note that autistic employees vary in the workplace. Younger employees may have received a diagnose very early their childhood while those in their 30’s to 50’s were more than likely diagnosed as adults. Many in fact may not realize they are autistic due to lack of information during their formative years. This rings true especially for women who did not fit the typical stereotype of autism.

Challenges Training Autistic Employees

The use of idioms, sarcasm, irony, metaphors and figure of speech may be difficult since most are literal thinkers.

Due to sensory sensitivities, harsh lighting and certain smells may be intolerable.

May feel anxiety working with groups during an activity, which includes role-playing and case studies.

Discomfort with noise

Coping with the unpredictable

Strategies In Training Autistic Employees
  • ·         Structured breaks- give notice in advance
  • ·         Give visual instructions. Verbal instructions are difficult to remember
  • ·         Do not assume that the employee is not listening or paying attention
  • ·         When explaining, use explicit and concrete language
Accommodations

A diagnosis of autism also qualifies under the American Disability Act (ADA).  While some may not want to disclose their diagnosis, It’s always a good idea to make sure each person is comfortable in the training. The following are some suggestions:

  • ·         Provide advance notice of topics to be discussed if possible
  • ·         Allow employees to use items to hold such as hand-help squeeze balls 
  • ·         Allow use of a noise-cancellation headset
Tips to Remember

Some autistic employees have a history of being bullied, which for many have carried over into the workplace.  Set rules in the beginning of the training that all participants should be respected.

 

 

 

 

 

 

Mosaic Down Syndrome Resources

What is Mosaic Down Syndrome?

Mosaic Down Syndrome represents 2 to 4% of all cases of people with Down Syndrome. This occurs when a person has a certain percentage of translocation cells with the remaining cells unaffected. meaning people with mosaic down syndrome have a certain percentage of cells with the extra 21 chromosome. The physical characteristics of mosaic down syndrome vary from having similar characteristics of a person with down syndrome to almost none.

Medical Sites

Mayo Clinic
Medline Plus
Wikipedia

Associations

International Mosaic Down Syndrome Association
Mosaic Down Syndrome UK