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What is autism? What can I do next?

Although no one can predict the future for any child—with or without a diagnosis of autism—the future is much brighter for children diagnosed today than they were even a decade ago.

When a child is diagBaby looking in mirrornosed with an autism spectrum disorder (ASD), parents often experience a range of emotions—from disbelief and confusion, to sadness and fear, to feeling overwhelmed and even feeling relieved that they finally know what’s going on. This is absolutely normal. 

All parents ask, “What do I do next?” Although there is no simple answer to that question, it might be helpful for you to know that there are many promising advances in the treatment of children with ASDs, and that there are many resources to help you.

Intensive behavioral intervention during critical developmental years can result in dramatically improved outcomes for very young children, but the maze of treatments, Early Intervention, and specialty services can seem overwhelming and confusing to navigate. In the sections below we strive to give you an objective and straight-forward guide to some of your therapeutic options and ways to get started.

You can help advance treatments for ASD

There are many research studies underway that are leading to new treatments and therapeutics. You can help by joining a research study.

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  • Getting Started

    Getting Started after Diagnosis

    Understanding the diagnosis of Autism Spectrum Disorder (ASD) is an important first step for parents.  Though symptoms and severity vary, ASD affects children's ability to communicate and interact with others.  Children with ASD can also have difficulty with nonverbal communication, such as eye contact, facial expressions, and gestures (such as pointing). Children’s play skills are often delayed and can be repetitive and may include avoiding and/or seeking particular sensations.  Although some children are good-natured and easygoing, others might have difficult behaviors and show frustration with changes in their routines.  Sometimes these behaviors are related to difficulties understanding social interactions or challenges with learning certain skills.  Because every child’s individual strengths and challenges vary, each child will need a different combination of programs and services to match his or her individual learning and social profile.

    Doctors and other health-care professionals use different labels and language to describe children with ASD. Your child might be described as “autistic,” having autistic features, or being “on the autism spectrum.”  It is referred to as a spectrum because autism affects the skills and abilities of each child differently.

    Our Autism Resourse Specialists have created a Parent Information Packet (PIP) that is a guide for families that have recently received the diagnosis. The PIP includes information about available services, treatments, legislation, insurance, educational options and a list of valuable resources.

    You may also want to contact the autism support center in your area (listed below). This is an agency especially created to help you and your family with the many questions you might have.

    For information about resources in your area, contact the autism support center nearest to you:

    Autism Alliance of Metrowest in Natick. Serves Metrowest and Middlesex West. 508-652-9900. 

    Autism Resource Center in West Boylston. Serves Worcester, North Central & South Valley areas. 508-835-4278   

    Autism Support Center in Danvers. Serves Northeast region 978-777-9135

    Family Autism Center in Westwood. Serves Norfolk County 
781-762-4001, Ext. 310  

    Community Autism Resources in Swansea. Serves Southeastern region, Cape Cod & Islands 508-379-0371  

    Community Resources For People With Autism in Easthampton. Serves Western region 413-529-2428    

    TILL & Boston Families for Autism in Dedham. Serves Greater Boston 781-302-4835   

    Autism Resource Specialists

    Boston Medical Center
    Developmental and Behavioral Pediatrics
    Shari King
    617-414-3666
    shari.king@bmc.org
    Lauren Bartolotti
    617-414-3691
    lauren.bartolotti@bmc.org

    Boston Children's Hospital
    Developmental Medicine Center
    Neal Goodman
    617-355-6802
    Neal.Goodman@childrens.harvard.edu

    Floating Hospital for Children
    at Tufts Medical Center
    Bernadette Murphy Bentley
    617-636-1305
    bbentley@tuftsmedicalcenter.org

    Lurie Family Autism Center
    Mass General Hospital for Children
    Suzanne Bloomer
    781-860-1728
    Sbloomer@partners.org

    University Massachusetts Medical School
    Kelly Hurley
    774-442-2269
    hurleyk@ummhc.org

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  • What is an Autism Spectrum Disorder?

    What is an Autism Spectrum Disorder

    ASD is a complex neurodevelopment disorder, characterized by a range of social communication and interaction impairments, and restricted, repetitive, and stereotyped patterns of behavior. 

    It is a “spectrum” disorder because every individual with ASD has symptoms that differ in intensity, ranging from mild to quite severe. Symptoms of ASD are usually noticed in early childhood, but for some may not become obvious until the child is a bit older. All children with ASD, however, have some degree of difficulty in the following two areas:

    For your child to be diagnosed with autism, he or she must meet the symptom criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM) published by the American Psychiatric Association. This manual is used by providers to diagnose behavioral conditions and by insurance companies to reimburse for treatment.  Prior to the May 2013 publication of the DSM-5 diagnostic manual, there were recognized distinct subtypes of autism, including autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger syndrome.  In DSM-5, all three autism disorders were merged into one umbrella diagnosis of ASD.

    Also, the ASD diagnosis now includes a severity scale from mild to severe that helps guide treatment for the child and gives you a greater understanding of where your child is on the “spectrum”.  Another change was the decrease in the number of symptom domains from three to two.  In the DSM-IV, autism is characterized by delays or abnormal functioning in one or more of the following domains:

    1. Social interaction
    2. Communication
    3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities 

    In the DSM-5, there are two domains:

    1. Social communication domain, which was created by merger of key symptoms from the DSM-IV social and communication domains, with focus on social interaction and not on the level of language skills, and
    2. Fixated interests and repetitive behavior or activity. 

    Overall, the new diagnostic criteria in the DSM-5 are helping clinicians more accurately diagnose ASD by recognizing the differences from person to person, instead of providing general labels that were not being consistently applied across different clinics and centers.

    To read more about ASDs, visit these websites:

     

    American Academy of Pediatrics

    Autism Speaks

    Centers for Disease and Control and Prevention

     

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  • How is ASD Treated?

    The most highly recommended treatment plans for children with Autism Spectrum Disorder (ASD) begin as soon as possible after diagnosis and include many hours of individual work with a child. Your child’s doctor or other specialist will recommend a plan that is specific to your child’s needs

    For children under age 3

    In Massachusetts, children under 3 years of age with ASD are eligible for two sets of related services through the Department of Public Health:

    Early Intervention (EI) Services are provided at home or your childcare location, and might include speech therapy, occupational therapy, physical therapy, and a developmental specialist. Read more about EI here . It’s important to note that EI is a family-centered program and that supports are available to parents in the form of a social worker or psychotherapist. Many EI agencies also offer playgroups in their offices or in the community once or more a week, and provide transportation so your child can attend the playgroup. In addition, your family will have an EI service coordinator who facilitates all services, including working with your Specialty Services provider, described next.

    Specialty Services are key components in the care of a child with an ASD and the services are also provided at home or your child-care location. The providers will use therapy approaches known as “ABA” or “Floortime,” or a combination of the two (descriptions of these approaches follow).  Experts recommend that children with ASD receive up to 25 hours a week of intensive services, depending on their individual needs. The ABA/Floortime providers should work closely with your EI therapists. 

    For children over age 3

    Children ages 3 and over with an ASD receive their services through their local school district if they are determined to be eligible through a detailed process described in “A Parent’s Guide to Special Education” available in English, Spanish, and Portuguese at www.fcsn.org/parents-guide. Services are almost always provided in school, but home-based services might also be included. Contact the Special Education department in your local school district to begin the process. You can find your school district in the phone book or by visiting the Massachusetts Department of Elementary and Secondary Education website at http://profiles.doe.mass.edu/.

    If you live in another state, ask your child’s doctor how to access local resources.

    In “ABA” and “Floortime,” two of the most commonly used comprehensive teaching approaches for children with ASD, providers work step-by-step with a child to build language, social, and play skills. Here is a general description of each approach:

    Applied Behavioral Analysis (ABA) builds new skills and eliminates difficult behaviors by breaking tasks down into small steps. This scientifically researched approach is especially effective in gaining the attention of children who can be challenging to reach. ABA can be done in any setting -- at a table, on the playground, or in the classroom -- as long as the provider is a trained ABA professional.

    Floortime (also known as DIR – the Developmental, Individual Difference, and Relationship-Based approach) includes highly motivating routines based on the child’s interests and builds social, communication, and play skills through increasingly complex, playful interactions. Similar approaches include Social Communication, Emotional Regulation and Transactional Support (SCERTS) and Relationship Development Intervention (RDI).

    In addition to these approaches, most programs for children with ASD incorporate specific tools such as:

    Speech-language therapy, which helps a child learn to understand and express her or himself through language.

    Total communication interventions, which involve using language, vocalizations, pictures and gestures as well as sign language and the Picture Exchange Communication System (PECS) – almost any means that a child can and will use to communicate.

    Occupational therapy, physical therapy and sensory integration therapy, which respectively focus on a child’s hand and finger skills (fine motor), large muscle (gross motor), and sensory needs.

    Positive behavioral supports, which minimize challenging behaviors through rewarding appropriate behaviors, responses, and task completion.

    Medical professionals might also implement the following therapies:

    Medication There is no medication specifically for ASD.  Some medications can help with symptoms such as hyperactivity, anxiety, compulsive behaviors, attention, or aggression. Ask your doctor for advice as to whether one or more medications might be appropriate for your child and if the benefits outweigh any risks or side effects associated with the medication.

    Biological therapies which include specialized or restricted diets, nutritional supplements and vitamin regimens. Consult your doctor to determine whether these approaches have been demonstrated to be safe and effective.

    There are helpful books available to learn more about these and other therapies.  We have curated a list of books that we think are especially good.

    In addition to these approaches, most programs for children with ASDs incorporate specific tools such as:

    • Speech-language therapy, which helps a child learn to understand and express her or himself through language.
    • Total communication interventions, which involve using language, vocalizations, pictures and gestures as well as sign language and the Picture Exchange Communication System (PECS) – almost any means that a child can and will use to communicate.
    • Occupational therapy, physical therapy and sensory integration therapy, which respectively focus on a child’s hand and finger skills (fine motor), large muscle (gross motor), and sensory needs.
    • Positive behavioral supports, which minimize challenging behaviors through rewarding appropriate behaviors, responses, and task completion.
       

    Medical professionals might also implement the following therapies:

    • Medication.  There is no medication specifically for ASD.  Some medications can help with symptoms such as hyperactivity, anxiety, compulsive behaviors, attention, or aggression. Ask your doctor for advice as to whether one or more medications might be appropriate for your child and if the benefits outweigh any risks or side effects associated with the medication.
    • Biological therapies, which include specialized or restricted diets, nutritional supplements and vitamin regimens. Consult your doctor to determine whether these approaches have been demonstrated to be safe and effective.

    The Autism Consortium is working closely with clinicians and researchers to identify new treatments and therapeutics.  Learn more about our efforts here.

    Good programs for children with an ASD will have the following features:

    • Focus on social and communication skills.
    • Use positive behavior supports and strategies.
    • Set goals and assess progress regularly.
    • Work with your child’s individual needs and interests.
    • Have predictable schedules.
    • Have a high teacher-to-student ratio.
    • Involve the family (for example, parent education or home-based programs).
    • Are full day (5 hours), full week (5 days a week), and full year (12 months).
    • Are taught by experienced staff who are trained in working with children with ASDs.
    • Include transition planning to help a child move smoothly to the next level.
       

    More Information and resources can be found online

  • Early Intervention

    What is Early Intervention?
    (for children under age 3)

    Early Intervention (EI) is a statewide, integrated, developmental program available to families of children birth to 3 years of age. A child may be eligible for EI services if she or he has:

    • Developmental delays and challenges as a result of a congenital abnormality.
    • An identified disability.
    • If typical development is at risk due to certain birth-related or environmental circumstances.

    EI provides services that contribute to the developmental progress of eligible children and supports for the family. Professionals in various disciplines work with children to help them acquire physical, cognitive, communication, and social/emotional skills so they will have the best chance to become happy and healthy members of the community. They might also offer parent support and training, parent and child play groups, swimming programs, and other opportunities to help the child and family thrive.

    Who is eligible for EI?

    Any child, birth to age 3, and his or her family may be eligible for EI services if the child:

    • Is not reaching age-appropriate milestones in one or more areas of development.
    • Is diagnosed with a physical, emotional, or cognitive condition that may result in a developmental delay.
    • Is at risk for developmental delay due to biological, environmental, or other factors, such as prematurity, major birth trauma, or illness.
       

    How can your child and family become involved with EI?

    Anyone in Massachusetts (a parent, doctor, caregiver, teacher, even a friend or acquaintance) can make a referral by calling 800-905-8437 (800-905-TIES) without a prescription. Ask for a list of certified Early Intervention programs serving your community and then contact the EI agency directly.

    What happens after a referral?

    An EI team will conduct a developmental assessment of your child with your family members present to determine eligibility. This assessment will focus on specific areas of your child’s development, including cognitive, speech/language, motor and self-help skills, social and emotional development, and behavior.

    If your child is found to be eligible, an Individualized Family Service Plan (IFSP) will be written based on the individual needs of your child and family. EI will begin working with your child and family within 45 days of referral.

    Who provides EI services?

    Depending on your child’s needs, services are provided by professionals in a specific field. An educator, physical therapist, speech and language pathologist, psychologist, occupational therapist, social worker, nurse, or another specialty service provider may be a member of the team. Your child’s pediatrician and other health care providers are also members of the team. You--the parents--are the most important members of your child’s team and should feel comfortable contributing your opinions, asking questions, and participating in treatment. 

    Where and how are services provided?

    Often the EI team will serve your child and family in a “natural environment” such as your home, child-care center, playground, or library. Serving children in natural environments helps them get accustomed to and participate in typical community activities and meet other children.

    How are services paid for?

    In Massachusetts, most health insurances pay for some or all of the cost of services if you give consent to have your insurance billed. The Massachusetts Department of Public Health pays for any costs not covered by insurance, including co-payments and deductibles. For more information call 800-905-8437 or go to www.massfamilyties.org.

    What should I do next?

    Your child’s pediatrician can make the referral, or you can call yourself.  If you live in Massachusetts, call the Central Directory for Early Intervention at 800-905-8437 (800-905-TIES) or visit www.massfamilyties.org for a listing of Early Intervention programs serving your community. A member of the EI team will then schedule an evaluation with your family to determine eligibility.  

    If you live in another state, contact your Department of Public Health to find out which agency can help your child.

  • Autism Specialty Services

    What Are Specialty Services?
    (for children under age 3)

    The Massachusetts Department of Public Health has set up a system to provide intensive intervention to children with autism spectrum disorder who are enrolled in Early Intervention. In addition to the comprehensive services provided by your local early intervention program, you may choose to have additional help from a Specialty Service Provider. These providers have particular expertise in the area of autism. They offer highly structured, individualized treatment programs that promote communication and social skills and address behavior that interferes with learning.

    Who is eligible for Specialty Services?

    A child who is enrolled in an Early Intervention Program who receives a diagnosis of Autism Spectrum Disorder from a physician or psychologist is eligible for Specialty Services.

    Who are Specialty Service Providers?

    Specialty Service Providers are agencies who have demonstrated expertise in the area of autism spectrum disorders and have been approved by the Department of Public Health to work in conjunction with Early Intervention Programs to serve children under age 3 with this diagnosis.  Each agency covers a particular geographic area.

    How do I find a Specialty Service Provider?

    The list of approved providers is on page 15. A list of approved providers can also be found on the Massachusetts Early Intervention Training website:

    How can my child be referred to a Specialty Service Provider?

    You may contact the provider yourself or you may ask your Early Intervention Service Coordinator to make the contact for you. 

    May I interview more than one Specialty Service Provider?

    Yes. You may set up an intake appointment with more than one Specialty Service Provider. Read more about the Programs’ philosophy and approach by visiting their website. Select a program that uses the approach recommended by your child’s doctor and that feels most appropriate for your child and family.

    What are the costs associated with Specialty Services?

    At the present time, Specialty Services are provided at no direct cost to families.

    Do Specialty Service Providers offer services such as speech/language therapy, occupational therapy, and physical therapy?

    No; not routinely.  Some Specialty Service Providers have speech, occupational, and physical therapists on staff who consult to children receiving intensive intervention from time to time, but these types of therapy services are not part of the Specialty Service system. Your child will continue to receive the services specified on his/her Individualized Family Service Plan through your Early Intervention program. 

    How are the numbers of hours of intervention determined?

    Most Specialty Service Providers start with five to six hours of intervention per week and then increase those hours as the child’s ability to adapt to the structure of the sessions grows. The family’s schedule, the age of the child, his/her learning style and behavioral characteristics, and rate of progress will also be considered in developing treatment plans. No formula dictates how much service is sufficient for any particular child. The quality of the instructional sessions and the degree of continuity across the child’s day may be more important than the number of hours provided.

    Remember that all of the Specialty Service Providers will be working closely with you and any of your child's caretakers to promote social skills and communication and to manage behavior that interferes with learning.

    Are parents expected to be involved in Specialty Service intervention?

    Most definitely!  Research indicates that children whose parents are very involved in the various aspects of their intervention are more likely to make progress.  Specialty Service Providers expect that parents will learn and use strategies that can help their children progress.

    What will happen when my child turns three and is no longer eligible for EI?

    Children are not eligible for Early Intervention or Specialty Services after their third birthdays.  Some Specialty Service Providers, however, have staff available if schools want to hire them for direct service, consultation, and/or staff training after the child turns 3.

    How should parents prepare for their child’s transition to preschool?

    The transition from early intervention to preschool can be an emotional time for any parent, and when you have a child with Autism Spectrum Disorder (ASD), the issues you face may become even more complex. When your child turns two-and-a-half it is time to work with your EI provider to begin preparing for an effective transition to preschool.

    The Individuals with Disabilities Education Act (IDEA) requires a minimum of a 3-month transition period from early intervention to preschool. During this period, evaluations and meetings are scheduled as mandated by the IDEA law.  Spending extra time on the transition process will not only reduce the uncertainty you might be feeling but also help your child adjust more easily to preschool.

    To help ensure a smoother transition process, here are several things you can do:

    • Consent process
    • Review IEP timeline (page 22)
    • First, schedule a Transition Planning Meeting with your Early Intervention team as soon as possible but no fewer than 90 days before your child’s third birthday, to help determine your next steps in transitioning your child to preschool. 
    • With support from the Early Intervention team, schedule a meeting with your local public school district to develop an appropriate plan to map out the Special Education services your child might be eligible to receive following Early Intervention. 
    • Plan to visit preschool programs you are seriously considering.  Schedule a visit during times when you can observe the typical activities each program offers and see if you can also arrange to have your child participate in their activities as a way of trying them out.

    For more information about specialty services such as ABA or Floortime, call the Early Intervention intensive services coordinator at 413-586-7525.

    Information provided by the Early Intervention Program within the Massachusetts Department of Public Health

    Specialty Service Providers

    Amego
    Services provided: ABA Serves: Most of Southeast region, some South Shore communities. 508-455-6220

    Applied Behavioral Learning Services
    Services provided: ABA Serves: Boston, Metrowest, and the West. 617-467-4136

    Beacon ABA Services
    Services provided: ABA Serves: Most communities except Berkshire, Dukes, and Nantucket counties. 508-478-0207 ext. 315

    Behavioral Concepts
    Services provided: ABA Serves: Central Region. 774-573-0291

    Building Blocks
    Services provided: Floortime. Early Start Denver Model-based program of ABA Serves: Northeast region, Boston, Worcester, and some surrounding communities. 978-824-2326

    Children Making Strides
    Services provided: ABA Serves: Most of Southeast region. 508-563-5767

    Community Health Link
    Services provided: ABA Serves: Central and North Central regions. 978-401-3841

    Futures Behavior Therapy Center
    Services provided: ABA Serves: Most of the Northeast. 978-969-2894

    HMEA, Inc.
    Services provided: ABA Serves: Central, Southeast, Metrowest, and Greater Boston. 508-298-1170

    Make a Difference in Children
    Services provided: ABA Serves: Attleboro, Brockton, Norwood, Taunton, and surrounding communities. 508-455-2379

    The May Center
    Services provided: ABA Serves: Eastern Massachusetts 781-437-1382
    Serves: Western Massachusetts. 413-734-0300

    New England Center for Children
    Services provided: ABA Serves: Boston, most communities in Metrowest and Central regions. 508-481-1015

    Pediatric Development Center
    Services provided: Floortime Serves: Berkshire County. 413-499-4537, Ext. 106 or 103

    RCS Behavioral & Educational Consulting
    Services provided: ABA Serves: Most communities in the Northeast. 508-650-5946

    Reach Educational Services
    Services provided: ABA Serves: Cape Cod & Islands, Plymouth area. 508-932-8526

    Servicenet – Reach PGM
    Services provided: Floortime Serves: Hampshire, Hampden, and Franklin counties, and North Quabbin area. 413-397-8986, ext. 409

    Spectrum Autism Treatment
    Services provided: ABA Serves: Southeast region excluding Cape Cod & the Islands. 774-206-1125