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.
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 diagnosed 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.
There are many research studies underway that are leading to new treatments and therapeutics. You can help by joining a research study.
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.
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
Boston Medical Center
Developmental and Behavioral Pediatrics
Boston Children's Hospital
Developmental Medicine Center
Floating Hospital for Children
at Tufts Medical Center
Bernadette Murphy Bentley
Lurie Family Autism Center
Mass General Hospital for Children
University Massachusetts Medical School
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:
In the DSM-5, there are two domains:
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.
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
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.
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.
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).
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.
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.
The Autism Consortium is working closely with clinicians and researchers to identify new treatments and therapeutics. Learn more about our efforts here.
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:
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.
Any child, birth to age 3, and his or her family may be eligible for EI services if the child:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
You may contact the provider yourself or you may ask your Early Intervention Service Coordinator to make the contact for you.
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.
At the present time, Specialty Services are provided at no direct cost to families.
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.
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.
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.
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.
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:
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
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
Services provided: ABA Serves: Central Region. 774-573-0291
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
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
Spectrum Autism Treatment
Services provided: ABA Serves: Southeast region excluding Cape Cod & the Islands. 774-206-1125