The Extraordinary Demands Placed on Parents Raising Kids on the Spectrum

"Is it normal (or selfish of me) to feel a sense of sadness and disappointment now that we have learned our son has autism (high functioning)? How do you cope effectively with these demands - and the stress - of raising a special needs child? I need a big dose of strength right now... been a bad day :( "

Moms and dads of kids with Asperger’s Syndrome (AS) and High-Functioning Autism (HFA) play multiple roles. Often, they are the first adults to recognize a developmental problem, and they should pursue their concern until they receive a diagnosis and find services for their youngster.

Once they become involved in a treatment program, moms and dads should be active partners in their youngster’s treatment process to ensure that skills learned in therapy transfer to the home-setting, school, and community at large. As members of the individualized education plan (IEP) team, moms and dads should also be active advocates for the youngster, ensuring that the educational process goes forward smoothly.

These many demands on moms and dads occur in the context of family life, including the needs of siblings, parents as individuals and as a couple, and family needs as a whole. In addition, the parents of AS and HFA  kids may experience sadness, anger, disappointment, or other complex emotions that can accompany the initial discovery that their youngster has a developmental problem and the ongoing need to make sacrifices to serve the needs of their youngster. Most families cope effectively with these demands, but some may encounter significant stress as they raise their AS and HFA youngster.

Specific knowledge, skills, and scientifically-based information about Autism Spectrum Disorders and their treatment are needed. The mastery of specific teaching strategies that enable parents to help their youngster acquire new behaviors and an understanding of the nature of AS and HFA and how it influences their youngster’s learning patterns and behavior is paramount. Moms and dads also need to be familiar with special education law and regulations, available services, and how to negotiate on behalf of their youngster. Furthermore, some parents need help coping with the emotional stress that can follow from having a special needs youngster.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

The fact that parents serve a key role in effective treatment for their youngster is not without costs, and the implications for family life are considerable. Many moms and dads face multiple, demanding roles. Research suggests that while many families cope well with these demands, the education of a youngster with AS and HFA can be a source of considerable stress for some families. In general, moms report more stress than do dads, often describing issues related to time demands and personal sacrifice. Among specific concerns expressed by moms are:
  • the community’s acceptance of their youngster
  • the youngster’s ability to function independently
  • worry about their youngster’s welfare in the years ahead

Moms of kids on the spectrum also report more stress in their lives than do moms of kids with other disabilities (e.g., ADHD).

Dads of kids on the spectrum report more disruption of planning family events and a greater demand on family finances than do dads whose kids are developing typically. These three groups of males do not differ, however, on measures of perceived competence as a father, marital satisfaction, or social support.

In a study of families who had a boy on the spectrum under the age of 6 referred to the TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Kids) program, studies found that, while dads assumed some role in the youngster’s care, moms carried a much greater burden. This difference was not due solely to employment outside of the home. Moms who worked in jobs outside of the home still had greater childcare burdens than their employed spouses. The study also found that meaningful support from one’s spouse was an important predictor of the quality of parenting in the home.

The time spent working with a youngster with AS and HFA is sometimes stressful and demanding, but it also has the potential to reduce family distress and enhance the quality of life for the entire family – including the youngster on the spectrum. Techniques like individualized problem solving, in-home observations and training, and didactic sessions have been employed with families. Moms who learned skills based on the TEACCH model of education for their youngster showed a decrease in depressive symptoms over time in comparison with a group of moms not given this training.

One study found that teaching moms and dads how to use pivotal response training as part of their applied behavioral analysis instruction resulted in happier parent-child interactions, more interest by the moms and dads in the interaction, less stress, and a more positive communication style. The use of effective teaching methods for a youngster with AS and HFA can have a measurable positive impact on family stress. As the youngster’s behavior improves and his skills become more adaptive, families have a wider range of leisure options and more time for one another. To realize these gains, the mother and father must continue to learn specialized skills enabling them to meet their youngster’s needs.

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism
Many moms and dads can learn to cope with the demands of parenting a youngster with AS and HFA once they learn about the emotions with which they are dealing with – and how to address them. Not all moms and dads experience these feelings. However, it is helpful for them to be aware of the various emotions involved – and to realize that their experiences and feelings are normal.

  • Hopes and plans for youngster's future
  • Lifestyle prior to youngster's birth or diagnosis
  • Loss of the "perfect youngster" that was anticipated prior to the birth or diagnosis

  • Toward the educational system
  • Medical system
  • Religious belief system
  • Themselves, spouse, youngster
  • Treatment team

  • Youngster's suffering
  • Less attention toward other kids
  • Less focus on self
  • Relationship with spouse
  • Unable to protect youngster

Feelings of Loneliness:
  • No one else understands what they are going through
  • Avoid having to explain youngster's conditions and answer questions
  • Can sense that others are uncomfortable around youngster
  • Depressed
  • Difficulty meeting youngster's needs outside of home
  • Financially unable to do activities
  • Lack of accommodations
  • Not wanting to interact with others
  • Resentment toward others with "typical kids"
  • Unable to leave home

Low Sense of Self-Worth:
  • Right parenting decisions under normal circumstances may not work for youngster due to AS/HFA
  • Interactions with many therapists who assign various labels and diagnoses of youngster

  • Youngster's future
  • Educational needs
  • Ability to live independently when older
  • Safety
  • Stable relationship with spouse
  • Own mental health
  • Next crisis

  • Advocating for accommodations
  • Attempting to meet needs of other family members
  • Balancing career and family
  • Dealing with insurance coverage and financial concerns
  • Dealing with other's reactions and opinions
  • Decrease in support system
  • Lack of accommodations for youngster
  • Lack of exercise
  • Lack of prior medical or advocacy experiences
  • Learning details of youngster's disorder and about related treatment
  • Making choices regarding youngster's treatment
  • Managing appointments for various professionals
  • Managing time
  • Poor eating habits
  • Sleep deprivation
  • Some parents may become forgetful, miss appointments, and experience other symptoms of stress
  • The youngster's Individualized Education Plan (IEP)

Feeling Isolated:
  • Detachment in other areas of life due to focus on youngster's needs
  • Feelings of despair and hopelessness
  • Over-involvement in work or other activities

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

How can moms and dads care for themselves and move forward?

Find a support system:
  • Locate a counselor to address feelings
  • Locate a support group
  • Meet and interact with other families of kids with AS/HFA
  • Re-establish relationship with spouse
  • Seek discussion boards on the internet
  • Surround self with nurturing individuals that are accepting of youngster and parenting choices
  • Utilize a treatment team that is supportive and empowers moms and dads to make choices that are right for their family

Find Balance:
  • Alone time with spouse
  • Exercise
  • Find enjoyable social activities
  • Fun activities as a family
  • Meditate
  • Use a baby sitter
  • Work outside of home

  • Enjoyable books/magazines
  • Books by other moms and dads of kids with AS/HFA

Recognize Positive Features of Youngster and Life:
  • Involvement in other kid's lives
  • Realize own wisdom and strength
  • Recognize that the youngster is a fighter
  • See gains the youngster has made

Love the Youngster for the Person He Is:
  • Acknowledge youngster as an individual who may have different life goals
  • Identify what youngster has instead of what she does not have
  • Learn to accept youngster for who she is

Other Ideas:
  • When feelings of crisis have passed, attempt to focus on things that can be controlled instead of those that can't be controlled
  • Use religious/spiritual resources and beliefs
  • Remember that taking care of yourself is important to you and your youngster
  • Remember that it is the journey that counts – not the destination
  • Recognize that different treatment options work for different kids and different families
  • Practice assertiveness skills with treatment team, family, friends, and people in the community
  • Gain understanding that life is about change
  • Attempt to focus on the present instead of the future

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

Assessing Asperger’s and High-Functioning Autism: Tips for Clinicians

Developmentally-based assessments of cognitive, communicative, and other skills provide information important for both diagnosis and program planning for kids with Asperger’s Syndrome (AS) and High-Functioning Autism (HFA). Careful documentation of a youngster’s unique strengths and weaknesses can have a major impact on the design of effective intervention programs and is particularly critical due to the fact that unusual developmental profiles are common.

Given the multiple areas of difficulty, the efforts of experts from various disciplines are often needed (e.g., audiology, neurology, pediatrics, physical and occupational therapy, psychiatry, psychology, speech and language pathology). The level of expertise required for effective diagnosis and assessment may require the services of professionals other than those usually available in a school setting.

In some cases, psychological and communication assessments can be performed by existing school staff, depending on their training and competence in working with kids with AS and HFA. However, other services (e.g., management of seizures, drug therapy, genetic testing, etc.) are managed in the health care sector. Some kids may fall between systems, and therefore not be served well.

Several principles underlie assessment of a youngster with AS or HFA:

1. A developmental perspective is important. Given the strong association of mental retardation with Autism Spectrum Disorders, it is important to view results within the context of overall developmental level.

2. Behavioral difficulties must be considered, since they affect both the youngster’s daily functioning and considerations for intervention.

3. Functional adjustment should be assessed. Results of specific assessments obtained in more highly structured situations must be viewed in the broader context of a youngster’s daily functioning and response to real-life demands. The youngster’s ability to translate skills into real world settings is particularly critical.

4. Multiple areas of functioning should be assessed, including current intellectual and communicative skills, behavioral presentation, and functional adjustment.

5. Social dysfunction is probably the most defining feature of AS and HFA, so it is important that the effect of a youngster’s social challenges on behavior be considered.

6. Variability of behavior across settings is typical. Behavior of a youngster will vary depending on such aspects of the setting as novelty, degree of structure provided, and complexity of the environment. Thus, observation of facilitating and detrimental environments is useful.

7. Variability of skills is typical, thus it is important to identify a youngster’s specific profile of strengths and weaknesses rather than simply present an overall global score. Similarly, it is important not to generalize from an isolated skill to an overall impression of general level of ability, because such skills may grossly misrepresent the youngster’s typical abilities.

Various diagnostic instruments can be used to help structure and quantify clinical observations. Information can be obtained through observation (e.g., Autism Diagnostic Observation Scale) as well as the use of various diagnostic interviews and checklists (e.g., Autism Diagnostic Interview-Revised; Childhood Autism Rating Scale; Autism Behavior Checklist; Aberrant Behavior Checklist). An adequate assessment will involve both direct observation and interviews of mothers, fathers and educators.

The range of symptoms in AS is quite broad and spans the entire range of IQ. A diagnosis can be made in a low-functioning youngster as well as in a youngster who is intellectually gifted. In addition, children with AS vary along a number of other dimensions (e.g., levels of communicative ability, degree of behavioral difficulties, etc.). As a result, in working with the youngster, considerable expertise is required. Clinicians must consider the quality of the information obtained (both in terms of reliability and validity), the involvement of mothers/fathers and educators, the need for interdisciplinary collaboration, and the implications of results for intervention. Coordination of services and facilitating discussion between members of assessment/treatment teams and mothers/fathers is critical.

A range of components must be part of a comprehensive educational evaluation of kids with AS and HFA. These include:
  • communicative assessment
  • consultation regarding aspects of motor, neuropsychological, or other areas of functioning
  • medical evaluation
  • obtaining a thorough developmental and health history
  • psychological assessment

This information is important both to diagnosis and differential diagnosis and to the development of the IEP.

The psychological assessment should establish the overall level of cognitive functioning as well as delineate a youngster’s profiles of strengths and weaknesses. This profile should include consideration of a youngster’s ability to remember, solve problems, and develop concepts. Other areas of focus in the psychological assessment include:
  • social cognition
  • play
  • motor and visual-motor skills
  • adaptive functioning

Kids with AS and HFA will usually need to be observed on several occasions during more and less structured periods.

The choice of assessment instruments is a complex one and depends on the youngster’s:
  • ability to cope with transitions in test activities
  • ability to respond to complex instructions 
  • ability to respond to social expectations
  • ability to work rapidly
  • level of verbal abilities

Kids with AS and HFA often do best when assessed with tests that require less social engagement and less verbal mediation. In addition to the formal quantitative information provided, a comprehensive psychological assessment will also provide a considerable amount of important qualitative information. It is important that the clinician be aware of the uses and limitations of standardized assessment procedures and the difficulties that these kids often have in complying with verbal instructions and social reinforcement. Operant techniques may be helpful in facilitating assessment.

Difficulties in communication are a central feature of AS and HFA, and they interact in complex ways with social deficits and restricted patterns of behavior and interests in a given child. Accurate assessment and understanding of levels of communicative functioning is important for effective program planning and intervention. Communication skills should be viewed in a broad context of the child’s development. Standardized tests constitute only one part of the assessment of communication abilities in young people with AS and HFA. The selection of appropriate assessment instruments, combined with a general understanding of these disorders, can provide important information for purposes of both diagnostic assessment and intervention.

In addition to assessing expressive language, it is critical to obtain an accurate assessment of language comprehension. The presence of oral-motor speech difficulties should be noted. In kids with AS and HFA, the range of communicative intents may be restricted in multiple respects. Delayed and immediate echolalia are both common and may have important functions. In addition, various studies have documented unusual aspects even of very early communication development in AS and HFA.

In assessing language and communication skills, parent interviews and checklists may be used, and specific assessment instruments for kids with AS and HFA have been developed. For kids under age 3, scores on standardized tests may be particularly affected by difficulties in assessment and by the need to rely on parent reports and checklists. For preverbal kids, the speech-communication assessment should include observation of a youngster’s level of awareness of communication from others, the youngster’s sense of intentionality, the means used for attempting communication, and the quality and function of such means, sociability, and play behaviors. The clinician should be particularly alert to the youngster’s capacity for symbolic behavior since this has important implications for an intervention program.

There are also several standardized instruments that provide useful information on the communication and language development of pre-verbal kids with AS and HFA. These include:
  • Mullen Scales of Early Learning
  • MacArthur Communicative Development Inventor
  • Communication and Symbolic Behavior Scales

For kids with some verbal ability, social and play behaviors are still important in terms of clinical observation but various standardized instruments are available as well, particularly when the youngster exhibits multi-word utterances. Areas to be assessed include:
  • articulation
  • expressive language and comprehension
  • morphology
  • pragmatics
  • prosody
  • receptive and expressive vocabulary
  • semantic relations
  • syntax

The choice of specific instruments for language-communication assessment will depend on the developmental levels and chronological age of the youngster. Additional observations may address aspects of topic management and conversational ability, ability to deal with non-literal language, and language flexibility. The clinician must be flexible and knowledgeable about the particular concerns related to assessment of kids with AS and HFA.

Motor abilities may represent an area of relative strength for a youngster, but as time goes on, the development of motor skills in both the gross and fine motor areas may be compromised, and motor problems are frequently seen in young kids with AS and HFA. Evaluations by occupational and physical therapists are often needed to document areas of need and in the development of an intervention program. Standardized tests of fine and gross motor development and a qualitative assessment of other aspects of sensory and motor development, performed by an expert in motor development, may be helpful in educational planning.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism


The Mark Hutten Show

If you missed this week's show, you can listen to a recording of it here: All About Autism Spectrum Disorders - Radio Show Archive

How to Have a Meltdown-Free Thanksgiving: Tips for Parents of Kids on the Spectrum

"My son with HFA does not do well with guests (and rarely seen family members) showing up at our house on Thanksgiving. Any helpful suggestions regarding how to make things run more smoothly this year?"

I'm glad you're thinking ahead. Prevention, prevention, prevention is key. If you have to intervene, it's often too late to circumvent behavioral issues.

Many parents of children with Aspergers and High-Functioning Autism (HFA) experience difficulties, both with handling the sensory overload that comes with Thanksgiving events, and with understanding the deeper meanings of this special day.

The challenges of kids with an autism spectrum disorder - and the behaviors that result - can be mysterious for those who have had little experience with them (e.g., other family members). Most of these behaviors arise from differences in the ways that these kids experience, understand and interact with the world.

Most Aspergers and HFA children find it hard to understand the social and emotional meanings of language and nonverbal behavior (e.g., words about emotions or facial expressions, tones of voice that convey emotions, etc.). They also have a harder time understanding their own feelings, and those of others.

Many kids on the autism spcctrum are easily overwhelmed by sights, sounds and touch – and even by smells and tastes. As a method of protection, these kids may shut-out sensory information by withdrawing or absorbing themselves in repetitive behaviors or idiosyncratic interests, which can interfere with learning about their surroundings and connecting with the family members who care most about them. It can be painful for parents when their special needs child “disconnects,” which motivates many of them to move mountains to help their child learn to engage in relationships with them and others.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

Adjusting to changes in routine or to new events and experiences is often a much bigger challenge for kids on the spectrum. Lights and music and special decorations that may be magical for other kids may lead these young people to panic, scream and run out of the room, or fall on the floor and thrash about. As with other transitions, limiting changes in routine and new sensations, and introducing them very gradually whenever possible, can help these kids begin to open up to them.

The youngster's behavior is “predictably unpredictable” during transitions. Over time, moms and dads learn what to expect. They learn how to prevent or shorten the frequency of meltdowns by preparing their youngster in advance, even rehearsing small bits of the new activities. Providing protection against too much stimulation and being sure that their son or daughter has access to favored toys and activities can also often help them to relax.

Still, moms and dads are bound to be on guard at times of heightened excitement. They know they may need to drop everything to try to help their youngster pull himself together again. Brothers and sisters of the child are often on guard, too – and may even be frightened. Often, siblings feel responsible and wish that they could make everything all better. Or they may feel guilty about their desire to have a “normal” family.

Moms and dads may feel all alone and without support as they raise a youngster with Aspergers or HFA. These feelings are bound to be intensified during Thanksgiving, when the challenges are often even greater and their youngster’s differences seem to stand out more. Having relatives and friends who don’t judge – and who really care and are eager to help – can make a big difference. Yet, it may be hard for those who have not had direct contact with the youngster to imagine what it’s like for parents and siblings when communication, social interaction and sensory processing are disrupted.

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

So how can families affected by an autism spectrum disorder get together for family functions in a way that is pleasing for everyone? Here are some tips:

1. As much as possible, attempt to stick to your youngster’s normal home routine on Thanksgiving Day (even though you may be entertaining guests later that day). As you get closer to the hour when guests will be arriving, make sure to prepare your youngster in advance for what is to come.

2. These kids need structure and routine. When Thanksgiving disrupts the usual schedule, the youngster can become anxious, depressed, and agitated. Minor incidents can turn into violent and explosive displays of anger. Visiting family members can make Thanksgiving easier by understanding the youngster's disorder and by doing whatever is necessary to support the mother and father.

3. Be sure to allow your child to have access to his special interests throughout the day (e.g., favorite toy, personal DVD player, iPod, etc.) to make him more comfortable. Also, if he displays “stimming” behaviors (i.e., repetitive behaviors like opening and closing a door, snapping his fingers, rocking back and forth, etc.), explain to your guests why it’s important to allow the youngster to continue the activity. These activities may bring comfort to kids on the spectrum, and help them cope with the changes around them. If others are uncomfortable with your child’s behavior, they can excuse themselves discreetly from the room if necessary, but don’t try to force the child to stop the behavior (unless it is overly-disruptive or rude).

4. Be sure to watch your child’s intake of sweets, sugar and caffeine during Thanksgiving Day, which can trigger anxious feelings and resultant meltdowns.

5. Changes to a daily routine, good or bad, can trigger a meltdown that is way out of proportion to the cause. Even a small and seemingly insignificant incident can result in a meltdown. The youngster may not respond well to decorating the home and having extended family over for Thanksgiving dinner. Thus, moms and dads should consider keeping Thanksgiving celebrations as low-key as possible.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

6. Focus on a few things that you know are important to make sure you have prepared around this time. Of course, some things may need modification so that it is possible to enjoy them with your youngster (e.g., if there is a danger of him hurting himself on fragile decorations, put them higher up and out of reach; some special foods may not be served; the child may need frequent time-outs from visiting family in order to de-stress).

7. Food can cause upsets and meltdowns from some HFA youngsters. If there is nothing served that your child enjoys, it can be upsetting and frustrating. Make sure to consider his diet and appetite during Thanksgiving, and don’t force him to indulge in typical Thanksgiving menus when he may not want to try new foods. This is not the time to force the youngster to eat new foods.

8. If you are stressed, your child will sense it. So stay calm and relax as much as possible so that you can enjoy yourself – and decrease your youngster’s anxiety.

9. In the days leading up to Thanksgiving, use role-play and rehearsal to let your youngster practice and learn how to deal with the upcoming social situations.

10. Lower your expectations of what you can really do. In this way, what you do will be less stressful and make Thanksgiving special.

11. Make the demands on yourself realistic, and don't try to do so much that you feel only frustration. Make realistic lists and work on things one at a time. Looking at Thanksgiving Day is less overwhelming if you take it in small pieces.

12. Many kids on the spectrum are sensitive to certain smells. If this is the case with your child, and you are visiting in another family member’s home, let them know ahead of time. Unscented products are usually preferable. These children may react negatively to candles and other smells. Be aware of what triggers problems for your youngster, and try to avoid them rather than handle them after an incident occurs.

13. Noise is a major problem for some of these kids. Minimize noise and allow your child to wear earplugs or use his iPod during large family gatherings if necessary. Keep music low, and avoid over-crowded rooms of people talking. Find a peaceful place for your child to go when the crowd grows and noise is high (e.g., a quiet bedroom, sunroom, dad’s office, etc.). A short rest with a snuggly blanket and quiet time can work wonders.

14. Take pictures of the family gathering and work with your youngster to make a book of pictures that can help him remember the things that you did. This can be used to prepare him for next year’s Thanksgiving celebration.

15. Watch for signs of over-stimulation before they escalate.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

Best Comment:
Really spot on advice. Holidays, large groups & any new stress is really tough for my son (& then for his sister who gets upset when he has a meltdown). Easy enough for us to understand the suggestions but how do you help extended family to understand that you're only trying to do the best you can for your child & not trying to make dinners & get togethers difficult. I've tried in the past to bring it up but it hasn't gone over well & has caused more of an issue. It can feel so isolating at those times. Lack of understanding makes an already tough time of year for him into a really hard time.


The Escalating Incidence of Autism Spectrum Disorders: What’s Being Done?

The number of children being diagnosed with Autism Spectrum Disorders (ASDs) is growing at an alarming rate. Latest figures from the Centers for Disease Control and Prevention (CDC) reaffirm that ASDs are a critical public health issue that deeply impacts the lives of millions of Americans. ASDs are present from birth (or very early in development) and affect basic human behavior (e.g., social interaction, the ability to communicate ideas and feelings, imagination, etc.).

Although exact neuro-biological mechanisms have not yet been established, it is clear that ASDs reflect the functioning of a child’s developing brain. ASDs are unique in their pattern of deficits and areas of relative strengths. They generally have lifelong effects on how kids learn to be social beings, to take care of themselves, and to participate in the community. ASDs occur along with mental retardation and language disorder in many cases. Thus, educational planning must address both the needs typically associated with ASDs, and needs associated with accompanying disabilities.

Education is currently the primary form of treatment for ASDs. The education of kids with ASDs was accepted as a public responsibility under the Education of All Handicapped Children Act in 1975. Despite the federal mandate, however, the goals, methods and resources available vary considerably from state to state – and school system to school system. In the last few years, courts have become increasingly active in determining the methods and resources allocated by school systems for the education of young people with ASDs.

At the request of the U.S. Department of Education’s Office of Special Education Programs, the National Research Council formed the Committee on Educational Interventions for Children with ASDs and charged the committee to integrate the scientific, theoretical, and policy literature and create a framework for evaluating the scientific evidence concerning the effects and features of educational interventions for kids with ASDs. The primary focus of the charge was early intervention, preschool, and school programs designed for kids with ASDs from birth to age 8. The charge included specific suggestions to examine the following issues pertaining to the education of kids with ASDs:
  • assistive technology
  • classification
  • diagnosis
  • early intervention
  • inclusion
  • the rights of kids with ASDs under the Individuals with Disabilities Education Act

Through the Combating Autism Act, the Department of Health and Human Services (HHS) is investing in strategies to enable kids and teens that have (or are at risk for developing) ASDs to reach their full potential by the following:

• To address the shortage of professionals who are qualified to provide screening and diagnostic evaluation for ASDs, Leadership Education in Neuro-developmental and Other Related Disabilities (LEND) programs support long-term, graduate level interdisciplinary training as well as interdisciplinary services. With Combating Autism Act funding totaling $106.5 million, LEND programs expanded the number of health-care professionals in the pipeline who are qualified to provide screening and diagnostic evaluation for ASDs by increasing the number of trainees who receive a broad range of ASD-focused training and continuing education.

• HHS has awarded 16 State Implementation Grants since 2009 to improve access to comprehensive, coordinated health care and related services for kids and teens with ASDs. Each state receives approximately, $220,000-$300,000 per year. In 2011, planning grants were added as an additional strategy to help States that had limited resources and structure in place to improve ASD services, and each received $75,000 per year.

• Developing a system of services that includes screening kids early for possible ASDs; conducting early interdisciplinary evaluations to confirm - or rule out - ASDs; and providing evidence-based early interventions when a diagnosis is confirmed.

HHS has also partnered with The Arc of the United States to establish a National Resource and Information Center on Autism Spectrum Disorder and Other Developmental Disabilities (Center). The Autism NOW Project is collaborating with several partners, including the Autistic Self Advocacy Network, the Autism Society of America and several ADD Network entities to engage and leverage a national network of disability, aging, and family organizations. The Center provides resources related to community-based experiences (e.g. education, employment, recreation, transportation, early intervention, child care), and evidence-based interventions for ASD service providers, researchers, families, and people with ASDs.

In FY 2012, the National Institutes of Health (NIH) invested an estimated $169 million in research on ASDs. This program of research is guided in part by the objectives set out in the IACC Strategic Plan with particular research focus on:
  • Developing effective supports, services, and interventions for people with ASDs
  • Identifying potential environmental risk factors that may be linked to the cause(s) of ASDs
  • Improving screening and diagnosis of ASDs
  • Testing and developing therapeutic treatments for the symptoms of ASDs

Examples of ASD research investments include:

1. Screening and diagnosis of ASDs. Findings from NIH-supported research are shedding new light on how cognition differs among kids with ASDs in comparison to kids who do not have ASDs, as well as how new tools might help therapists and researchers identify children who are potentially at-risk for ASDs.

2. Research to improve services and interventions for ASDs.  NIH has encouraged and supported cutting-edge research to address the need for services and behavioral interventions needed by people with ASDs and their families (e.g., studies of behavioral interventions among younger kids; studies of social skills intervention for high-functioning kids, and tools to help them develop and maintain skills needed for successful employment).

3. National Database for Autism Research.  This NIH-supported resource provides qualified ASDs researchers access to an extensive database of biomedical information on people with ASDs and their families. Current NDAR users have access to data from 25,000 study participants. Data from Autism Speaks’ Autism Genetic Resource Exchange (AGRE) and Autism Tissue Program were federated and now share data through NDAR. The data is protected by a Certificate of Confidentiality, which protects the privacy of research participants.

4. Identifying ASDs Risk-Factors.  NIH-supported research has continued to investigate the causes of ASDs, and in particular the possible role that environmental risk-factors may play in causing ASDs (particularly with regard to how genetic vulnerability and environmental exposures may place people at greater risk for ASDs).

5. Autism Centers of Excellence (ACE). This NIH-wide program includes six centers focusing research on risk factors for ASDs, early brain development and functioning, and the biological bases of core symptoms (e.g., repetitive behaviors, communication difficulties, and social impairment), and five networks focusing on causes, characterization, and improved treatment.   Data from the ACEs, along with all new NIH-funded research is expected to be shared through the NIH National Database for Autism Research.

Supporting State efforts to address ASDs:

1. State Protection and Advocacy Agencies. The State Protection and Advocacy Agencies (P&As) provide services to people with ASDs based on the  Developmental Disabilities Assistance and Bill of Rights Act of 2000. These efforts include:
  • working to resolve complaints through mediation, alternative dispute resolution and litigation
  • the protection and advocacy of legal and human rights
  • investigation of complaints of violation of rights of people with developmental disabilities
  • information and referral

In FY 2012, $40.9 million was invested in these efforts.

2. State Councils on Developmental Disabilities.  The State Councils on Developmental Disabilities (SCDD) are charged with identifying the most pressing needs of individuals with ASDs in their state or territory. Councils work to address these needs through systems change and capacity building efforts that promote self-determination, integration and inclusion for individuals with ASDs. SCDD efforts include:
  • advocacy, capacity building and systems change
  • barrier elimination
  • coalition development and citizen participation
  • demonstration of new approaches to services and supports
  • informing policymakers
  • technical assistance
  • training

In FY 2012, $74.8 million in federal funding was invested in these efforts.

3. State Councils and Protection and Advocacy Systems.  These entities partner with state governments, local communities, self-advocates, family members and the private sector to help individuals with ASDs reach their maximum potential through greater independence, productivity and increased integration in their communities.

Medicare and Medicaid and ASDs:

The Centers for Medicare and Medicaid Services (CMS) provides a wide array of health-related services to beneficiaries with ASDs enrolled in Medicaid, Medicare, and the Children’s Health Insurance Program. The Medicaid program in particular supports people with ASDs who have limited income and resources, and meet certain eligibility criteria. Because Medicaid is a State-based program, available care and services may vary from State to State, and according to age. In addition to physical health services, Medicaid programs provide strong support for community living through home and community-based services such as respite care and employment supports. 

The Affordable Care Act and ASDs:

The Affordable Care Act contains important provisions for people with ASDs and their families.  Under the new health care law:

• Insurance companies will no longer be able to impose lifetime dollar limits on coverage.  Prior to the Affordable Care Act, many plans set a dollar limit on what they would spend for covered benefits during the time people were enrolled in the plan, leaving those affected by ASDs – and their families – to pay the cost of all care exceeding that limit.  The law also restricts annual dollar limits and will prohibit them for new plans altogether starting in 2014.

• Job-based and new individual health insurance plans are no longer allowed to deny, limit, or exclude coverage to any person under age 19 based on a pre-existing condition, including kids on the spectrum.  Starting in 2014, these protections will be extended to Americans of all ages.

• New health insurance plans or insurance policies must cover preventive services without cost-sharing, including ASDs screening for kids at 18 and 24 months.

• Starting in 2014, kids on the spectrum and their families will have expanded access to affordable insurance options through new Affordable Insurance Exchanges and improvements in Medicaid.

• Starting in 2014, new health plans sold in the individual and small group markets, including Exchanges, will cover “essential health benefits” to help make sure that health insurance is comprehensive.  Health insurers will also have annual out-of-pocket limits to protect families’ incomes against the high cost of health care services.

• Young people can remain covered under their parents’ insurance up to the age of 26.  Already, 2.5 million more individuals have been insured through this provision of the new law.  For a young person with a ASDs and his/her family, that means more flexibility, more options and greater piece of mind.

The Department of Education:

• In 2010 and 2011, the National Institute on Disability and Rehabilitation Research (NIDRR) invested over $3.7 million in research on people with ASDs. Research topics range from improving independent living, developing assistive technology, and improving vocational rehabilitation services.

• In September 2011, the Department issued regulations for the Individuals with Disabilities Education Act of 2004 (IDEA) Part C early intervention program for younger kids with disabilities, improving administration of the program and transition services to the IDEA Part B program for kids identified as having developmental disabilities, including those that may have the early warning signs of ASDs.

• Since 2010, the Department has invested more than $30 million in the Model Transition Programs for Students with Intellectual Disabilities into Higher Education (TPSID) program.  The TPSID program was authorized in 2008 by the Higher Education Opportunity Act of 2008 (HEOA) and supports post-secondary programs that promote the successful transition of students on the spectrum with significant limitations in cognitive functioning, into higher education.

• The Department awarded $500 million to States for the Early Learning Challenge Fund, the President’s initiative to establish model systems of early learning for kids with developmental delays to ensure that more kids enter school ready to succeed. 

• The President's FY 2013 budget request includes $30 million for Promoting Readiness of Minors in SSI, a pilot program in coordination with the Social Security Administration and other federal agencies to improve post-school outcomes of kids who receive Supplemental Security Income.  The Department received funding in 2012 to plan the grants, which will be awarded competitively to States in 2013.

Contact your youngster’s doctor and share your concerns if you think he or she may have a spectrum disorder, or if you think there could be a problem with the way your youngster plays, learns, speaks, or acts. Ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your son or daughter.  Specialists who can do a more in-depth evaluation and make a diagnosis include:
  • Child Neurologists (specialists who work on the brain, spine, and nerves)
  • Child Psychologists or Psychiatrists (specialists who know about the human mind)
  • Developmental Pediatricians (specialists who have special training in child development and young people with ASDs)

Also, call your state’s public early childhood system to request a free evaluation to find out if your son or daughter 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. If your youngster is not yet 3-years-old, contact your local early intervention system. If he or she is 3-years-old or older, contact your local public school system. Even if he or she 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 the youngster evaluated. If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities at 1-800-695-0285.

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