Tag Archives: Autism

Autism Awareness Month

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

ASDs are “spectrum disorders” which means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.


Types of ASDs
There are three different types of ASDs:

  • Autistic Disorder (also called “classic” autism)
    This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
  • Asperger Syndrome
    People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
    People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.


Signs and Symptoms
ASDs begin before the age of 3 and last throughout a person’s life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.

A person with an ASD might:

  • Not respond to their name by 12 months
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play “pretend” games (pretend to “feed” a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people’s feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel


Diagnosis
Diagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis.

ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need.


Treatment
There is currently no cure for ASDs. However, research shows that early intervention treatment services can greatly improve a child’s development. Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services can include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has an ASD or other developmental problem.

Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation.

In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.

Learn about types of treatments »


Causes and Risk Factors
We do not know all of the causes of ASDs. However, we have learned that there are likely many causes for multiple types of ASDs. There may be many different factors that make a child more likely to have an ASD, including environmental, biologic and genetic factors.

  • Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD.
  • Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.
  • ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.
  • Some harmful drugs taken during pregnancy have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid.
  • We know that the once common belief that poor parenting practices cause ASDs is not true.
  • There is some evidence that the critical period for developing ASDs occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth.

ASDs are an urgent public health concern. Just like the many families affected in some way by ASDs, CDC wants to find out what causes the disorder. Understanding the risk factors that make a person more likely to develop an ASD will help us learn more about the causes. We are currently working on one of the largest U.S. studies to date, called Study to Explore Early Development (SEED). SEED is looking at many possible risk factors for ASDs, including genetic, environmental, pregnancy, and behavioral factors.


Who is Affected
ASDs occur in all racial, ethnic, and socioeconomic groups, but are almost five times more common among boys than among girls. CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD).

More people than ever before are being diagnosed with an ASD. It is unclear exactly how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out. We believe the increase in ASD diagnosis is likely due to a combination of these factors.

Within the past decade, CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network has been estimating the number of people with an ASD in the U.S. We have learned a lot about how many children in the U.S. have an ASD. It will be important to use the same methods to track how the number of people with an ASD is changing over time in order to learn more about the disorders.


If You’re Concerned
If you think your child might have an ASD or you think there could be a problem with the way your child plays, learns, speaks, or acts,contact your child’s doctor, and share your concerns.

If you or the doctor is still concerned, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child. Specialists who can do a more in-depth evaluation and make a diagnosis include:

  • Developmental Pediatricians (doctors who have special training in child development and children with special needs)
  • Child Neurologists (doctors who work on the brain, spine, and nerves)
  • Child Psychologists or Psychiatrists (doctors who know about the human mind)

At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.

Where to call for a free evaluation from the state depends on your child’s age:

  • If your child is not yet 3 years old, contact your local early intervention system.You can find the right contact information for your state by calling the National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285.Or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Infants and Toddlers with Disabilities: Ages Birth through 3″.
  • If your child is 3 years old or older, contact your local public school system.Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated.If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities at 1.800.695.0285 or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Children with Disabilities: Ages 3 through 5″.

Research shows that early intervention services can greatly improve a child’s development. In order to make sure your child reaches his or her full potential, it is very important to get help for an ASD as soon as possible.

Tips For Including People With Disabilities At A Party

With the holiday season upon us, it’s easy to hold a party where all guests — with and without disabilities — feel welcomed, respected and have fun. All it takes is some planning.

 Don’t be afraid to include guests with disabilities
People with disabilities have their disabilities 24/7, so they know how to create work-arounds so that they feel comfortable. If you know someone has a disability, use a simple strategy — ask the person what they need to be fully included. All too often people with disabilities are not invited to events, or don’t go because they feel embarrassed to “put someone out” by asking for a simple thing that will help them attend. By telling them that their presence is valued, and asking what they need, you will build a new level of trust and affection. For example, one of the biggest things that aging loved ones need is a ride. So help them find a carpool or send an accessible taxi or ride to pick them up and return them home.

RSVP
Not all disabilities are visible, so you may not know that someone you want to include in your event has some special needs. By including a line about accommodations in the invitation’s RSVP, you are already letting guests know that everyone is welcome. If it’s a party for children, parents can tell you, right off the bat, what their child’s needs might be to attend the party. They will be happy you asked! “We want everyone to have fun — please let us know if you have dietary restrictions or require other special accommodations to attend! We will do our best to meet everyones needs.” Note that you aren’t promising to meet all needs — if you can’t find a sign language interpreter at the last minute or there is another issue, for example, you will be able to let your guest know in advance. Indeed, they may be able to help you find a solution!

Physical Access
Most public places are accessible. However, because religious institutions are exempted from the Americans with Disabilities Act (ADA), many of them are not fully accessible. Thus, if your event is at a venue that is not physically accessible to all, move it to a place that is. That can mean a different room in a place of worship, or to a completely different place. Venues should have a ground level entrance or ramp, an elevator if it’s upstairs, and accessible bathrooms. Most public places (hotels, restaurants, bowling, video games, pools, bounce houses, etc.) are usually equipped for people with disabilities. Just check with the venue ahead of time. If you have someone coming who uses a wheelchair, you should also put the menorah on a table that is low enough for them to also be able to light candles.

Special Diets
Anyone can have allergies, celiac disease or lactose intolerance, but you won’t know unless you ask on the invitation RSVP. Making sure there is an option for cake, snacks, treats and other food for these guests can be as simple as picking up a gluten free cupcake to serve with the cake. It is thoughtful to have refreshments that everyone can enjoy.

Addressing attitude
Kids and adults can be daunted when encountering someone who is different from them. If it’s a children’s event you can talk to the group at the start of the party about kindness and respect for each other and each others differences. A party is a great opportunity for kids to learn about one another.

Involving parents
Parties can be exhausting for the hosts. Asking a parent or two to volunteer to help at the party, particularly if it’s a big group, can lighten the load for the hosts. Parents may feel more comfortable, especially if their child has social anxiety issues, if they are invited to stay or help as an option.

Sensory overload awareness
Parties can cause sensory overload for any child or adult. But for a person with autism or a sensory processing disorder, a party can be really overwhelming. Offer opportunities for guests to take a break, perhaps in a quiet room away from the crowd. Some venues may have options for turning down music or minimizing stimulation — and that is useful anywhere there are a lot of kids! Latex allergies (balloons) and chemical sensitivities (use of highly scented cleaners or staff wearing perfumes) are real issues. Solutions: Use alternative mylar balloons. Ask people to not wear strong scents, and choose unscented cleaning products.

Communication
If a guest attending the party is non-verbal or communicates in other ways such as American Sign Language or a communication board, talk about it with the guests. Installing free Dragon software onto an Ipad in advance can enable you to speak with someone who is deaf as it instantly transcribes what you are saying. Having an interpreter can be worth the cost, as all the people can communicate and maybe learn a little sign language! Remember to speak directly to a child or adult whether s/he is verbal or not.

Reading, Cognitive Access and Vision Issues
Children and adults with cognitive, learning disabilities or vision impairments might not be able to read the menu, instructions for a scavenger hunt or a game score sheet. Pictures and verbal instructions are useful, as well as pairing children with those who can help. It’s always great to have an extra pair of reading glasses around if you are inviting seniors. But you can always tell someone who can’t see or read what they will need or what to know.

Enjoy the party!
Don’t let inclusion stress you out. If you are reading this list and considering these tips, you’re already doing more than most! Stay positive, smile and throw that PARTY!

Autism Spectrum Disorders

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

ASDs are “spectrum disorders” which means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.


Types of ASDs
There are three different types of ASDs:

  • Autistic Disorder (also called “classic” autism)
    This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
  • Asperger Syndrome
    People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
    People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.


Signs and Symptoms
ASDs begin before the age of 3 and last throughout a person’s life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.

A person with an ASD might:

  • Not respond to their name by 12 months
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play “pretend” games (pretend to “feed” a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people’s feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel


Diagnosis
Diagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis.

ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need.


Treatment
There is currently no cure for ASDs. However, research shows that early intervention treatment services can greatly improve a child’s development. Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services can include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has an ASD or other developmental problem.

Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation.

In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.

Learn about types of treatments »


Causes and Risk Factors
We do not know all of the causes of ASDs. However, we have learned that there are likely many causes for multiple types of ASDs. There may be many different factors that make a child more likely to have an ASD, including environmental, biologic and genetic factors.

  • Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD.
  • Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.
  • ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.
  • Some harmful drugs taken during pregnancy have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid.
  • We know that the once common belief that poor parenting practices cause ASDs is not true.
  • There is some evidence that the critical period for developing ASDs occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth.

ASDs are an urgent public health concern. Just like the many families affected in some way by ASDs, CDC wants to find out what causes the disorder. Understanding the risk factors that make a person more likely to develop an ASD will help us learn more about the causes. We are currently working on one of the largest U.S. studies to date, called Study to Explore Early Development (SEED). SEED is looking at many possible risk factors for ASDs, including genetic, environmental, pregnancy, and behavioral factors.


Who is Affected
ASDs occur in all racial, ethnic, and socioeconomic groups, but are almost five times more common among boys than among girls. CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD).

More people than ever before are being diagnosed with an ASD. It is unclear exactly how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out. We believe the increase in ASD diagnosis is likely due to a combination of these factors.

Within the past decade, CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network has been estimating the number of people with an ASD in the U.S. We have learned a lot about how many children in the U.S. have an ASD. It will be important to use the same methods to track how the number of people with an ASD is changing over time in order to learn more about the disorders.


If You’re Concerned
If you think your child might have an ASD or you think there could be a problem with the way your child plays, learns, speaks, or acts,contact your child’s doctor, and share your concerns.

If you or the doctor is still concerned, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child. Specialists who can do a more in-depth evaluation and make a diagnosis include:

  • Developmental Pediatricians (doctors who have special training in child development and children with special needs)
  • Child Neurologists (doctors who work on the brain, spine, and nerves)
  • Child Psychologists or Psychiatrists (doctors who know about the human mind)

At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.

Where to call for a free evaluation from the state depends on your child’s age:

  • If your child is not yet 3 years old, contact your local early intervention system.You can find the right contact information for your state by calling the National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285.Or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Infants and Toddlers with Disabilities: Ages Birth through 3″.
  • If your child is 3 years old or older, contact your local public school system.Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated.If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities at 1.800.695.0285 or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Children with Disabilities: Ages 3 through 5″.

Research shows that early intervention services can greatly improve a child’s development. In order to make sure your child reaches his or her full potential, it is very important to get help for an ASD as soon as possible.

Autism Awareness Month

Autism Awareness Month

The importance of recognizing Autism throughout the month of April is to help better educate and raise awareness to the public. Autism is a complex mental condition and developmental disability, characterized by difficulties in the way a person communicates and interacts with other people. Autism can be present from birth or form during early childhood, typically within the first three years. Autism is a lifelong developmental disability with no single known cause.

People with autism are also known as having Autism Spectrum Disorder (ASD) both terms are often used interchangeably. People with ASD have a set of symptoms unique to themselves; no two people are the same. ASD affects people in different ways, and can range from very mild to severe. Although some symptoms are similar, such as challenges with social interaction, there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.

If you are looking for a way to get involved, donate for just want to learn more information about Autism you can visit the websites of some great organizations such as Autism Speaks, Autism Society and the National Autism Association.

World Autism Awareness Day: Light It Up Blue

Light It Up Blue - World Autosm Awareness Day

Every April 2, Autism Speaks celebrates World Autism Awareness Day with a global autism awareness campaign called Light It Up Blue. It’s easy (and fun!) to be a part of it — you can do anything from wearing blue to lighting your whole office or school up blue.

Add your name to say you’ll be a part of it, and we’ll be in touch with resources and ideas to get your friends involved. Thanks for helping shine a light on autism.

World Autism Awareness Day - Light It Up Blue

What Is Autism?
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Increasing autism awareness is a key aspect of this work and one in which our families and volunteers play an invaluable role.

March Is Developmental Disabilities Awareness Month

President Ronald Reagan declared March to be Developmental Disabilities Awareness Month in 1987, urging “all Americans to join me in according to our fellow citizens with such disabilities both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

What is a Developmental Disability?

Definition of Developmental Disability
Developmental Disability means a disability that is manifested before the person reaches twenty-two (22) years of age, which constitutes a substantial disability to the affected individual, and is attributable to mental retardation or related conditions which include cerebral palsy, epilepsy, autism or other neurological conditions when such conditions result in impairment of general intellectual functioning or adaptive behavior similar to that of a person with mental retardation. Unless otherwise specifically stated, the federal definition of “Developmental Disability” found in 42 U.S.C. 6000, et seq., shall not apply.

  • A. Impairment of general intellectual functioning means that the person has been determined to have an intellectual quotient equivalent which is two or more standard deviations below the mean (70 or less assuming a scale with a mean of 100 and a standard deviation of 15), as measured by an instrument which is standardized, appropriate to the nature of the person’s disability, and administered by a qualified professional. The standard error of measurement of the instrument should be considered when determining the intellectual quotient equivalent. When an individual’s general intellectual functioning cannot be measured by a standardized instrument, then the assessment of a qualified professional shall be used.
  • B. “Adaptive behavior similar to that of a person with mental retardation” means that the person has overall adaptive behavior which is two or more standard deviations below the mean in two or more skill areas (communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work), as measured by an instrument which is standardized, appropriate to the person’s living environment, and administered and clinically determined by a qualified professional. These adaptive behavior limitations are a direct result of, or are significantly influenced by, the person’s substantial intellectual deficits and may not be attributable to only a physical or sensory impairment or mental illness.

“Substantial intellectual deficits” means an intellectual quotient that is between 71 and 75 assuming a scale with a mean of 100 and a standard deviation of 15, as measured by an instrument which is standardized, appropriate to the nature of the person’s disability, and administered by a qualified professional. The standard error of measurement of the instrument should be considered when determining the intellectual quotient equivalent.

 

Definition of Developmental Delay
A developmental delay is the slowed or impaired development of a child who is under 5 years old and who is at risk of having a developmental disability because of the presence of one or more of the following:

  • Congenital syndromes and conditions associated with delay in development,
  • Metabolic disorders,
  • Prenatal and perinatal infections and significant medical problems,
  • Low birth weight infants weighing less than 1200 grams,
  • Postnatal acquired problems known to result in significant developmental delays, OR:
  • A child less than 5 years old who is delayed in development by 1.5 standard deviations or more in one or more of the following areas; communication, self-help, social-emotional, motor skills, sensory development or cognition, OR
  • A child less than 3 years of age who lives with one or both parents who have a developmental disability.

Congenital Heart Defects: Frequently Asked Questions

What is a congenital heart defect?

  • Congenital heart defects (CHDs) are problems with the heart’s structure that are present at birth.
  • Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.

How common are congenital heart defects?

  • CHDs are the most common birth defects. CHDs occur in almost 1% of births.
  • An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
  • Nearly 40,000 infants in the U.S. are born each year with CHDs.
  • CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.
  • Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
  • Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.

What is the health impact of congenital heart defects?

  • CHDs are the most common cause of infant death due to birth defects.
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
  • Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms of CHDs are less likely to reach adulthood.
  • Surgery is often not a cure for CHDs. Many individuals with CHDs require additional operation(s) and/or medications as adults.
  • People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
  • People with CHDs are now living long enough to develop illnesses like the rest of the adult population, such as high blood pressure, obesity and acquired heart disease.
  • CHDs are now the most common heart problem in pregnant women.

What causes congenital heart defects?

  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
  • Most CHDs are thought to be caused by a combination of genes and other risk factors, such as environmental exposures and maternal conditions. Because the heart is formed so early in pregnancy, the damage may occur before most women know they are pregnant.
  • Environmental exposures that may be related to risk of having a CHD include the mother’s diet and certain chemicals and medications. Maternal diabetes is a recognized cause of CHDs. Maternal obesity, smoking, and some infections also may raise the risk of having a baby with a CHD. Preventing these risk factors before a pregnancy is crucial.
  • A baby’s risk of having a CHD is increased by 3 times if the mother, father, or sibling has a CHD.

Unforgettable Anthem Performance

Marley Sommer is the eldest son of AHL Worcester Sharks coach Roy Sommer. Marley also has Down syndrome and is autistic. Neither stopped him from taking to the ice on Wednesday night to perform the Star Spangled Banner in front of the crowd.

Sporting a special Worcester Sharks jersey for Autism Awareness Month, Sommer was supposed to sing the anthem from the bench. He had other ideas. With his dad behind him, Sommer took advantage of the red carpet laid out for the puck drop and walked out to the middle of the ice and let loose with the national anthem.

As you would expect, there wasn’t a dry eye in the building according to Sharks broadcaster Eric Lindquist. Everybody couldn’t help but be touched by a pretty incredible moment.

April is National Autism Awareness Month

April is National Autism Awareness Month

What is autism?

Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.  Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).  Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.  Experts estimate that 1 out of 88 children age 8 will have an ASD (Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report, March 30, 2012).  Males are four times more likely to have an ASD than females.

What are some common signs of autism?

The hallmark feature of ASD is impaired social interaction.  As early as infancy, a baby with ASD may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time.  A child with ASD may appear to develop normally and then withdraw and become indifferent to social engagement.

Children with an ASD may fail to respond to their names and often avoid eye contact with other people.  They have difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior.  They may lack empathy.

Many children with an ASD engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging.  They also tend to start speaking later than other children and may refer to themselves by name instead of “I” or “me.”  Children with an ASD don’t know how to play interactively with other children.  Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking.

How is autism diagnosed?

ASD varies widely in severity and symptoms and may go unrecognized, especially in mildly affected children or when it is masked by more debilitating handicaps.  Very early indicators that require evaluation by an expert include:

  • no babbling or pointing by age 1
  • no single words by 16 months or two-word phrases by age 2
  • no response to nameA
  • loss of language or social skills
  • poor eye contact
  • excessive lining up of toys or objects
  • no smiling or social responsiveness.

Later indicators include:

  • impaired ability to make friends with peers
  • impaired ability to initiate or sustain a conversation with others
  • absence or impairment of imaginative and social play
  • stereotyped, repetitive, or unusual use of language
  • restricted patterns of interest that are abnormal in intensity or focus
  • preoccupation with certain objects or subjects
  • inflexible adherence to specific routines or rituals.

Health care providers will often use a questionnaire or other screening instrument to gather information about a child’s development and behavior.  Some screening instruments rely solely on parent observations, while others rely on a combination of parent and doctor observations.  If screening instruments indicate the possibility of an ASD, a more comprehensive evaluation is usually indicated.

A comprehensive evaluation requires a multidisciplinary team, including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals who diagnose children with ASDs.  The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing.  Because hearing problems can cause behaviors that could be mistaken for an ASD, children with delayed speech development should also have their hearing tested.

Children with some symptoms of an ASD but not enough to be diagnosed with classical autism are often diagnosed with PDD-NOS.  Children with autistic behaviors but well-developed language skills are often diagnosed with Asperger syndrome. Much rarer are children who may be diagnosed with childhood disintegrative disorder, in which they develop normally and then suddenly deteriorate between the ages of 3 to 10 years and show marked autistic behaviors.


What causes autism

Scientists aren’t certain about what causes ASD, but it’s likely that both genetics and environment play a role.  Researchers have identified a number of genes associated with the disorder.  Studies of people with ASD have found irregularities in several regions of the brain.  Other studies suggest that people with ASD have abnormal levels of serotonin or other neurotransmitters in the brain.  These abnormalities suggest that ASD could result from the disruption of normal brain development early in fetal development caused by defects in genes that control brain growth and that regulate how brain cells communicate with each other, possibly due to the influence of environmental factors on gene function.  While these findings are intriguing, they are preliminary and require further study.  The theory that parental practices are responsible for ASD has long been disproved.


What role does inheritance play?

Twin and family studies strongly suggest that some people have a genetic predisposition to autism.  Identical twin studies show that if one twin is affected, there is up to a 90 percent chance the other twin will be affected.  There are a number of studies in progress to determine the specific genetic factors associated with the development of ASD.  In families with one child with ASD, the risk of having a second child with the disorder is approximately 5 percent, or one in 20.  This is greater than the risk for the general population.  Researchers are looking for clues about which genes contribute to this increased susceptibility.  In some cases, parents and other relatives of a child with ASD show mild impairments in social and communicative skills or engage in repetitive behaviors.  Evidence also suggests that some emotional disorders, such as bipolar disorder, occur more frequently than average in the families of people with ASD.

Do symptoms of autism change over time?

For many children, symptoms improve with treatment and with age.  Children whose language skills regress early in life—before the age of 3—appear to have a higher than normal risk of developing epilepsy or seizure-like brain activity.  During adolescence, some children with an ASD may become depressed or experience behavioral problems, and their treatment may need some modification as they transition to adulthood.  People with an ASD usually continue to need services and supports as they get older, but many are able to work successfully and live independently or within a supportive environment.

How is autism treated?

There is no cure for ASDs.  Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement.  The ideal treatment plan coordinates therapies and interventions that meet the specific needs of individual children.  Most health care professionals agree that the earlier the intervention, the better.

  • Educational/behavioral interventions:  Therapists use highly structured and intensive skill-oriented training sessions to help children develop social and language skills, such as Applied Behavioral Analysis.  Family counseling for the parents and siblings of children with an ASD often helps families cope with the particular challenges of living with a child with an ASD.
  • Medications:  Doctors may prescribe medications for treatment of specific autism-related symptoms, such as anxiety, depression, or obsessive-compulsive disorder.  Antipsychotic medications are used to treat severe behavioral problems.  Seizures can be treated with one or more anticonvulsant drugs.  Medication used to treat people with attention deficit disorder can be used effectively to help decrease impulsivity and hyperactivity.
  • Other therapies:  There are a number of controversial therapies or interventions available, but few, if any, are supported by scientific studies.  Parents should use caution before adopting any unproven treatments.  Although dietary interventions have been helpful in some children, parents should be careful that their child’s nutritional status is carefully followed.

Pass on the Ribbon & Help Spread Rett Syndrome Awareness

Rett Syndrome Awareness Month

Rett syndrome is a rare, severe, “girls only” form of autism. It’s usually discovered in the first two years of life, and a child’s diagnosis with Rett syndrome can feel overwhelming. Although there’s no cure, early identification and treatment may help girls and families who are affected by Rett syndrome.

Who Gets Rett Syndrome?
Rett syndrome is an autism spectrum disorder that affects girls almost exclusively. It’s rare — only about one in 10,000 to 15,000 girls will develop the condition.

In most cases of Rett syndrome, a child develops normally in early life. Between 6 and 18 months of age, though, changes in the normal patterns of mental and social development begin.


What Are the Symptoms of Rett Syndrome?
Although it’s not always detected, a slowing of head growth is one of the first events in Rett syndrome. Loss of muscle tone is also an initial symptom. Soon, the child loses any purposeful use of her hands. Instead, she habitually wrings or rubs her hands together.

Around 1 to 4 years of age, social and language skills deteriorate in a girl with Rett syndrome. She stops talking and develops extreme social anxiety and withdrawal or disinterest in other people.

Rett syndrome also causes problems with muscles and coordination. Walking becomes awkward as girls develop a jerky, stiff-legged gait. A girl with Rett syndrome may also have uncoordinated breathing and seizures.


What Causes Rett Syndrome?
Most children with Rett syndrome have a mutation in a particular gene on the X chromosome. Exactly what this gene does, or how its mutation leads to Rett syndrome, isn’t clear. It’s believed that the single gene may influence many other genes involved in development.

Although Rett syndrome seems to be genetic, the faulty gene is almost never inherited from the parents. Rather, it’s a chance mutation that happens in the girl’s own DNA. No Rett syndrome risk factors have been identified, other than being female. There is no known method for preventing Rett syndrome.

When boys develop the Rett syndrome mutation, they die shortly after birth. Because boys have only one X chromosome (instead of the two girls have), the disease is more serious, and quickly fatal.


How Is Rett Syndrome Diagnosed?
A diagnosis of Rett syndrome is based on a girl’s pattern of symptoms and behavior. The diagnosis can be made on these observations alone. Discussions between a doctor and a girl’s parents will help determine important details, such as when symptoms started.
Genetic testing can help confirm the diagnosis in 80% of girls with suspected Rett syndrome. It’s possible that genetic testing can help predict severity.


Treatments for Rett Syndrome
There are treatments available for Rett syndrome that focus on helping a girl live the best life she can with the condition. Physical therapy can help improve mobility; speech therapy may help somewhat with language problems; and occupational therapy helps girls perform daily activities — like bathing and dressing — independently.

Experts believe that therapy can help girls with Rett syndrome and their parents. Although a “normal” life may not be possible, some improvement can be expected with therapy. Participating in activities — including school — and improved social interaction are sometimes possible.

Medicines can treat some of the problems with movement in Rett syndrome. Medication can also help control seizures. Unfortunately, there is no cure for Rett syndrome.


What to Expect With Rett Syndrome
Many girls with Rett syndrome can be expected to live at least into middle age. Researchers are still following women with the disease, which was only widely recognized in the past 20 years.

Symptoms of Rett syndrome don’t usually improve over time. It is a lifelong condition. Often, there is a very slow worsening of symptoms, or symptoms remain stable. Girls and women with Rett syndrome will rarely be able to live independently.

National Disability Employment Awareness Month Facts & Figures

National Disability Employment Awareness Month 2013 facts & figuresHeld each October, Disability Employment Awareness Month is a national campaign that raises awareness about disability employment issues. The opportunity to earn a living and be self-supporting is a broadly held goal by Americans. Work is a foundation of stability for individuals and can give one’s life meaning and purpose.  Unfortunately, the rate and level of employment for people with disabilities is staggeringly low. Labor force participation is 22% for people with disabilities as compared to 69% for people without disabilities.

National Disability Employment Awareness Month 2013

Because We Are EQUAL to the Task

2013 NDEAM Poster

Held each October, National Disability Employment Awareness Month (NDEAM) is a national campaign that raises awareness about disability employment issues and celebrates the many and varied contributions of America’s workers with disabilities. The theme for 2013 is “Because We Are EQUAL to the Task.”

NDEAM’s roots go back to 1945, when Congress enacted a law declaring the first week in October each year “National Employ the Physically Handicapped Week.” In 1962, the word “physically” was removed to acknowledge the employment needs and contributions of individuals with all types of disabilities. In 1988, Congress expanded the week to a month and changed the name to “National Disability Employment Awareness Month.” Upon its establishment in 2001, ODEP assumed responsibility for NDEAM and has worked to expand its reach and scope ever since.

Researchers Identify Possible Cause Of 1 In 4 Autism Cases

 

researchers identify possible cause of 1 in 4 autism cases

Nearly a quarter of could be due to antibodies found in the mother’s blood during pregnancy that interfere with fetal brain development, researchers say.

In a study published this week in the journal Translational Psychiatry, researchers report that certain antibodies found almost exclusively in women with children who have autism may be affecting brain development during pregnancy.

The problematic antibodies could account for as many as 23 percent of all cases of the developmental disorder, the study found.

“These findings are incredibly important because they establish a cause for a significant portion of autism cases, thereby opening up new lines of inquiry into possible biological treatments,” said Leonard Abbeduto, director of the University of California, Davis MIND Institute where the research was conducted.

Typically, maternal antibodies enter the placenta to help ward off bacteria and other viruses. But in some cases, instead of extending immunity to the child, these antibodies become what are known as autoantibodies and attack healthy tissue.

For the study, researchers looked at blood samples from 246 mothers of children with autism and 149 mothers of children without the developmental disorder. They found that nearly 1 in 4 moms with a child on the spectrum had certain combinations of antibodies that target fetal brain proteins. The antibodies were found in less than 1 percent of mothers in the control group.

The finding could lead to a diagnostic test that could be given to mothers if they have a young child suspected of having autism, researchers said, allowing children to enter early intervention.

Such a test might also be used to assess a woman’s chance of having a kid with autism prior to becoming pregnant, they indicated.

“It is important to note that women have no control over whether or not they develop these autoantibodies, much like any other autoimmune disorder,” said Judy Van de Water, a researcher at the MIND Institute who led the study. “And, like other autoimmune disorders, we do not know what the initial trigger is that leads to their production.”

In a separate study that was published in the same journal, researchers injected pregnant monkeys with the antibodies spotted in many mothers of kids with autism and found that the exposure negatively affected behavior and development in the offspring.

grants and funding sources for wheelchair handicapped accessible van conversions

Grants and Funding Sources for wheelchair handicapped accessible van conversions

2013 Toyota Sienna Wheelchair Van VMi New England

 

Act-Today for Autism
Awards grants up to $5,000 to families, with priority given to those with a household income under $100,000. Funding may be used for ABA, speech,OT, medications, & home safety devices.
19019 Ventura Blvd. Suite 200 Tarzana, CA 91356;
818-705-1625
www.act-today.org/act-today-grant-program.php

Asperger Association of New England  

Associated Grantmakers of Massachusetts
Philanthropic agencies may contact Associated Grantmakers to receive funding for their own charitable organizations.
55 Court Street, Suite 520 Boston, MA 02108
617-426-2606.
www.agmconnect.org

There are a network of Resource Centers across Massachusetts that provide free access to grant information.
http://www.agmconnect.org/RCP/access.aspx
The Leominster Public Library offers free computer access to Associated Grantmakers.
See below for additional information.

AutismCares / Crisis & Hardship
provides grants for individuals with autism spectrum disorders during times of crisis or unplanned hardships.    Critical living expenses such as; housing, utilities, car repair, daycare, funeral expenses, and other essential items on a case-by-case basis.
Support awards cannot exceed a total of $1500 per income eligible family.
www.autismcares.org

Autism Speaks Baker Summer Camp
Provides up to $3000 scholarships for financially disadvantaged campers with Autism Spectrum disorder to attend eligible camps.
www.autismspeaks.org/community/family_services/baker.php

Autism Support Daily
Awards various grants throughout the year, open to all incomes.
P.O. Box 4556,Burlington, VT 05406
802-985-8773
www.autismsupportdaily.com/id4.html

Catastrophic Illness in Children Relief Fund
Provides financial assistance to families in Massachusetts for expenses incurred for the medical and related needs of children under age 22 who are not otherwise covered by insurance, federal or state health-care assistance.
800-882-1435 or 617-624-6060.
www.mass.gov/cicrf

Children’s Charity Fund
Provides funds for medical or educational supplies, open to all incomes.
6623 Superior Ave Suite B, Sarasota, FL 34231
800-643-5787
www.childrenscharityfund.org

Community Block Grants
Home modification grants may be available by contacting your local city government.

Consumer Empowerment Funds Program of the Massachusetts Developmental Disabilities Council
Provides funds for individuals who are legal MA residents with developmental disabilities and/or a family member or guardian to attend conferences, trainings, or other events in MA or another state. Applications must be approved before the event and be based upon set program guidelines.
1150 Hancock Street, 3rd Floor, Suite 300Quincy, MA 02169. 617-770-7676 ext.115.
http://www.mass.gov/anf/employment-equal-access-disability/disability-info-and-resources/dev-disabilities-info/grant-info/council-empowerment-funds-program.html

CSL Foundation
The CSL Foundation, Inc. reaches out to children and teenagers in Massachusetts challenged by health and life issues, including those who are:

  • Facing a medical crisis
  • Living with a disability
  • Coping with chronic illness or the need for long-term care
  • Terminally ill

The CSL Foundation supports individuals and families in need, as well as local organizations that share our goals.
Located at 24 New England Executive Park, Suite 330 in Burlington, MA 0180
http://www.csl-foundation.org/
http://www.csl-foundation.org/CSL_Application_for_Assistance.pdf  (Application Form)
Email: escalora@csl-foundation.org
(781) 222-5120

Daniell’s Foundation
Danielle’s Foundation offers funding for children with cerebral palsy and brain injury.Danielle’s Foundation realizes how difficult it is for parents of children with cerebral palsy and brain injury to get their children the therapies and medical equipment they desperately need. In an effort to provide financial assistance, each quarter one deserving family will be awarded a grant of $2,000 or more (depending on the funds available within the foundation) to help get this necessary care that insurance has denied.

The grant will be given out four times a year.  The 4th Quarter deadline is December 31, 2012

Your child must have a diagnosis of cerebral palsy or brain injury, and you must be requesting the grant for assistance towards a specific therapy or medical equipment. For more information and to receive an application contact the toll free hotline at 1-800-511-2283.

The Danny Foundation
Funding ($100 to $500 per year) is available to individuals with autism and their families to help with costs for services and programs. Amounts are based upon financial need. The Danny Foundation is funded in part by the Doug Flutie Jr. Foundation for Autism.
119 Glendale Road, Sharon, MA 02067
781-784-7022

The Department of Early Education and Care (EEC)
Provides assistance, information and funding options for services and child care for children, birth to age 5, and their families. 617-988-6600.
http://www.mass.gov/edu/birth-grade-12/early-education-and-care/financial-assistance/financial-assistance-for-families/

Doug Flutie Jr. Foundation for Autism
Provides grants to IRS approved 501 c (3) organizations and qualified schools that in turn provide services, family support grants and resources to families. 866-3AUTISM or 508-270-1855, Framingham, MA.
www.dougflutiejrfoundation.org

Edwin Phillips Foundation
Provides grants to children of Marshfield.   Must have evidence of financial and medical need.
P.O. Box 610075, Newton, MA 02461-0075
http://www.edwinphillipsfoundation.org/grant-information

First Hand Foundation
Provides funds to families with limited incomes for Medical/psychiatric services, vehicle modification, transportation or items not covered by insurance.
2800 Rockcreek Parkway, Kansas City, MO 64117
816- 201-1569.
https://applications.cerner.com/firsthand/FirstHand_1a.aspx?id=28729

Helping Hand Program of the National Autism Association
Provides one-time grant awards per family based upon income, need and availability of funding.
The program helps qualified families pay for medical and therapy services used to treat adults and children diagnosed with autism. Grants awards are NOT given to families, but paid directly to vendor or service agency. Child must be ages birth to 18, reside in US, diagnosed with an autism spectrum disorder; 877-NAA-AUTISM (877-622-2884).
http://nationalautismassociation.org/family-support/programs/helping-hand/

NOTE:  2012 applications will be available and accepted from June 1, 2012 through July 1, 2012.

The Helping Hand Program provides families with financial assistance in getting necessary medical treatments/testing, supplements and behavioral therapy services for their child with autism. Do not apply for this grant if you are seeking funds for camp tuition, respite care, fencing, trampolines, swing sets, trips to Disney World, etc.

This program is intended ONLY for parents in DIRE financial need. Do not apply if your annual income exceeds $50,000. Please read all information thoroughly before submitting your grant request
.

Lend A Helping Hand
provides financial assistance (emergency assistance, campership & book mission) to low-income families and individuals for over 120 years. Working with social service agencies in the Greater Boston Area.
http://www.lend-a-hand-society.org/what-we-do/

Leominster Public Library Grant Center
Library has access to Associated Grantmakers of Massachusetts.  If unfamiliar with Associated Grantmakers, call 978-534-7522,ext.3 to schedule mini training about grant center.

Modest Needs
offers grants to low-income but generally self-sufficient households, displaced workers struggling to return to the workforce, permanently disadvantaged persons struggling to afford medical care, and small non-profit organizations.
https://www.modestneeds.org/for-applicants/
https://www.modestneeds.org/about-us/frecuently-asqued-questions-for-applicants.asp

Social Security Disability Insurance
Provides benefits to families because of a child’s disability, depending on income. To apply, call 800-772-1213.
www.socialsecurity.gov/disability/disability_starter_kits_child_eng.htm

United HealthCare Children’s Foundation
Households with private-pay or employer insurance (MassHealth/Medicaid subscribers do not qualify) may receive up to $5,000 annually/$10,000 lifetime to support their child, who must be 16 years of age or less.
MN012-S286, PO BOX 41, Minneapolis,MN 55440-0041; 800-992-4459.
www.uhccf.org/apply_applicant.html

Wish Upon a Hero Foundation
Individuals and families with financial need may submit “wishes” to this organization, which provides grants and other forms of charity to chosen applicants.
1640 NixonDrive, Suite 336 Moorestown, NJ 08057
foundation@wishuponahero.com
www.wishuponahero.com

 


Disclaimer: Please Note: Information in this fact sheet is provided as a service. It is not comprehensive, nor does it take the place of legal advice. The user is encouraged to check references for resources provided, and to keep in mind that the names of providers or additional sources of further information are intended as referrals only.