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.

Children with characteristics of an ASD may have co-occurring conditions, including Fragile X syndrome (which causes mental retardation), tuberous sclerosis, epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder.  About 20 to 30 percent of children with an ASD develop epilepsy by the time they reach adulthood. .

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 name

• 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.

What research is being done?

 

In 1997, at the request of Congress, the National Institutes of Health (NIH) formed its Autism Coordinating Committee (NIH/ACC) to enhance the quality, pace and coordination of efforts at the NIH to find a cure for autism (http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/nih-initiatives/nih-autism-coordinating-committee.shtml). The NIH/ACC involves the participation of seven NIH Institutes and Centers: the National Institute of Neurological Disorders and Stroke (NINDS), the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Mental Health, the National Institute on Deafness and Other Communication Disorders,  the National Institute of Environmental Health Sciences, the National Institute of Nursing Research, and the National Center on Complementary and Alternative Medicine.  The NIH/ACC has been instrumental in the understanding of and advances in ASD research.  The NIH/ACC also participates in the broader Federal Interagency Autism Coordinating Committee (IACC) that is composed of representatives from various component agencies of the U.S. Department of Health and Human Services, as well as the U.S. Department of Education and other government organizations.

In fiscal years 2007 and 2008, NIH began funding the 11 Autism Centers of Excellence (ACE), coordinated by the NIH/ACC.  The ACEs are investigating early brain development and functioning, social interactions in infants, rare genetic variants and mutations, associations between autism-related genes and physical traits, possible environmental risk factors and biomarkers, and a potential new medication treatment. 

How can I accept the fact my child has autism?

 

It's normal to go through a painful period of adjustment upon learning that your child has a special need. Here are some guidelines that may be helpful:

• Grieve the loss of the child you expected and begin to develop new dreams for the child you have.

• Recognize your child's strengths, as well as his limitations.

• Focus on helping your child to be "the best he can be." Avoid comparing your child with others.

• Educate yourself about your child's condition.

• Seek help -- for emotional issues, finding a caring health care provider, and creating an educational program that meets your child's needs.

• In addition to health care professionals and various therapists, other parents in your situation may be wonderful resources, providing support through one-on-one relationships or support groups, as well as through written personal stories about their adjustments and coping strategies.

 

How do I find support groups for families who have children with autism?

Autism is all around you. A few of the many organizations offering support, information and connection to others in your situation, in addition to local social service organizations, including Autism Speaks, the Autism Society of America, and Autismlink.

You can also attend conferences and lectures, and join the local special education political action committee. This way you can meet and befriend other parents who have children with autism, get together, and form your own small and more intimate support group.

 

What are the best ways to care for a child with autism?

• Educate yourself. Talk to other parents. Read the literature. Consult specialists.

• Get as much help as you can, as soon as you can. Early intervention can give your child the best chance of fulfilling his potential.

• Once you begin an Early Intervention program, your child will receive a great deal of therapy. It is essential to implement the same therapy at home, to provide your child with consistency and to teach that the learned behaviors must be utilized everywhere.

• Find objective measurements to determine if your child is really making progress and learning. This is crucial as you must intervene immediately if a therapy is not working and substitute one that is effective with your child.

• Creating a daily schedule that your child can count on will also be helpful. Have regular times for therapy, school, meals and bedtime. If you must change the schedule, alert your child to this change in advance, so that he will be able to adjust.

• Motivation is powerful. Rewarding good behavior can reinforce it. In order to effectively use motivation to change behavior, the appropriate reward has to be constantly varied, analyzed, and adjusted. Praise every new skill, no matter how small it may be.

• Carve out a safe space where your child can relax and feel secure. Visual cues that your child can identify will help, such as using colored tape to mark areas that are off limits. If your child has tantrums or injures himself, be sure to safety-proof your house.

• Find respite care. Due to the additional care needed by children with autism, respite care is considered a basic need that will help preserve family stability. Families that have children with autism and utilize respite care report less stress than those who don't. You can search for a respite special needs caregiver.

 

How does a child with autism affect family life?

 

Here are two perspectives:

A mother's perspective:

"The child with autism sucks up your physical, financial, and emotional resources, leaving little left for the rest of the family. You invest your time, financial, physical and emotional resources and don't get that much in return. It takes an enormous emotional toll for the rest of your life, yet brings very little joy.

A sibling's perspective: When Danielle Chelminsky was 16, she wrote:

"I hated that my brother's needs came first and he got more attention than I did. 'I wish I had autism so you would play with ME for a change!' I would think. I thought my parents loved my brother more than me. I resented him, and blocked him out of my life. I was closeted about him since I thought his disability made my friends judge me. I hated being his sister."

 

However, life with a child with autism has some benefits and can provide profound insight. At the age of 16, Danielle Chelminsky wrote,

"My brother will never go to college or have his own family -- things that we consider to be normal. Yet who is to say 'normal' people are necessarily happy? He, on the other hand, is. Being a simple-minded kid, simple things make him happy. He likes Chinese food, swimming and playing the recorder. No one knows exactly what he is thinking, yet the smile on his face while dancing at his bar mitzvah makes me wonder if he is the one who is normal and we aren't. We make our lives so complicated; we take for granted what we have. Why don't little things make me a happy as they do for him? Maybe my brother isn't a complete tragedy. Maybe he was put in our family to teach me something about myself."

 

How do I bring my child with autism out in public?

Parents of children who have autism learn quickly that public outings need to be planned for and that the child has to be prepared for what to expect, step by step. Doing so can turn a traumatic experience into a manageable one. Nevertheless, parents need to be prepared for disapproval from members of the public who don't understand their situation.

 

What precautions should I take to keep my child safe?

 

When caring for a child with autism, it helps to be proactive.

• Be prepared -- many kids with autism wander away. Introduce yourself and your child to the neighbors and police. Explain that your child has autism and that if they ever see him alone, they should contact you immediately. This will prevent many problems.

• Water attracts people with autism, and drowning is their number one cause of death, so it is important to take extra precautions whenever your child is near water.

• Have your child wear an identification tag with name, address and phone information in case he ever gets lost.

• Have a current photo of your child on hand to distribute in case he disappears, along with a list of identifying characteristics or behaviors that may attract attention.

• Have a list of suggestions on how to approach your child without causing undue alarm when he's found alone.

• Distribute a handout with all relevant information to any caregivers.

How can I best function as an advocate for my child?

The Individuals with Disabilities Education Act (IDEA), revised in 2004 and renamed the Individuals with Disabilities Education Improvement ACT, requires that each state provide all eligible children with "a free and appropriate education" that meets their unique needs. 

If your child has been diagnosed with a special need, then your child is considered disabled and eligible for Early Intervention services from when you child is born up until the age of 3, and then Special Education from the age of 3 to 22 in the "least restrictive environment." This act also states that parents are entitled to be treated as equal partners in formulating an educational plan that meets their child's needs.

In order to be an effective advocate for your child, you will need to be familiar with the law, both on a national and state level, so that you know your rights. You will also need to be informed about your child's disability and what treatments are most effective. It will help if you have an idea of what specific interventions you have observed are most helpful for your specific child.

In order to support your advocacy, closely observe your child and keep detailed notes, citing specific interventions and the conditions that occurred at the time of those interventions, which interventions resulted in which positive results, and which seemed to be counterproductive because of certain results. Carefully evaluate whether or not a new intervention is successful, giving precise reasons for your conclusions, and make sure a more effective intervention is substituted.

Once your child turns 3, you will meet once a year with representatives of the school department to collaboratively work out an Individualized Education Program (IEP) for your child. In order to successfully advocate for your child, you will have to be assertive. If your child will be mainstreamed in a public school classroom, the assistance of a one-on-one aide may be required, or perhaps other special accommodations will need to be made. If an aide is provided, this aide should have been trained and educated in autism.