MADIL

Massachusetts Aging Directory & Information Locator

Autism

Autism

Diagnostic critera for Autism Spectrum Disorder from the DSM V includes:

“Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history.”

“Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.”

“Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.”

“Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.”

According to the current DSM V, Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Because the disorders are a spectrum, the symptoms and characteristics can present in a variety of combinations from mild to severe, and in any combination. This means that two children with the same diagnosis can have varying skills and act very differently from each other. Children with autistic disorders typically have little to no verbal communication, repetitive behaviors are common, and there is often a diagnosis of intellectual disability. Children diagnosed with Asperger’s Syndrome are often verbal and possess normal to above normal intelligence levels; however there is often a significant lack of social interaction skills and a presence of repetitive behaviors. Children diagnosed with PDD-NOS have autistic tendencies but do not meet the complete diagnosis criteria for Autism.

Associations/Groups:

Autism Support Centers in Massachusetts

          Email: [email protected]

Advocates for Autism of Massachusetts (AFAM) 
AFAM formed in 2004 to address the need for public advocacy on behalf of individuals, families and professionals who have or deal with people of Autism Spectrum Disorders.

Asperger/Autism Network (AANE) 
Asperger/Autism Network (AANE)’s mission is to foster awareness, respect, acceptance, and support for individuals with AS and related conditions and their families.

What to Do When Your Child is Diagnosed with Autism
Exceptional Lives offers this guide for families.

Hopewell Autism Consortium
The Autism Consortium catalyzes rapid advances in understanding of autism by fostering collaboration among families, researchers, clinicians, and donors. Autism Consortium’s mission is to improve the care of children and families affected by autism and other neurological disorders.

Doug Flutie, Jr. Foundation for Autism 
The Doug Flutie Jr. Foundation for Autism is  dedicated to increasing the awareness of autism and the unique challenges of families by helping them find the resources they need and by funding advocacy programs as well as educational, therapeutic and recreational opportunities.

Massachusetts Division of Autism Resources for Families  
The Autism Division of the Department of Developmental Services provides community based supports to children up to age eighteen and information and referral information up to age 25 through the seven Autism Support Centers located across the Commonwealth. These Centers all receive state funding from the Department of Developmental Services Autism Division. These Centers offer a variety of supports including: help with the eligibility process for DDS Children’s Services and the Autism Division, information and referral resources, support groups and trainings. Funding from the Autism Division also provides social skills, sensory and a variety of vacation and family programs. Please contact the Center in your area for more information.

DDS Autism Waiver Services
The Autism Waiver Program at the Department of Developmental Services Autism Division serves children, birth through age 9, with an autism spectrum disorder who meet the eligibility criteria.

Information is available through the Autism Support Centers.

Autism Speaks
Autism Speaks is the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

Insurance Information:

Insurance Resource Center for Autism and Behavioral Health 
The Insurance Resource Center for Autism and Behavioral Health provides information to the public about insurance coverage under a new law, An Act Relative to Insurance Coverage for Autism (ARICA), which took effect in Massachusetts on January 1, 2011. There are many questions relating to the implementation of the law, e.g., to whom, ARICA applies, what treatments are covered and how to access coverage. The Center, a program of the E. K. Shriver Center, is designed to provide information and support for self-advocates, family members, providers, employers and educators on issues related to medical insurance for autism treatment. Also offers monthly webinars. Email  [email protected] for issues related to insurance coverage for autism treatment & services.  Amy Weinstock, Director.

Sign up to receive informational mailings, invitations to events, and updates: Sign up to receive ARICA updates via email.
Am I Covered? – An easy to use screening tool, that determines if a person’s insurance is subject to the Massachusetts Autism Insurance Law (aka ARICA)

Specific Resources:

 Newly Diagnosed

Autism Consortium Parent Information Packet for Families of Children with Autism Disorders (pdf)  
The Parent Information Packet (PIP) is published by Autism Consortium. It 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.

First 100 Days Toolkit 
The Autism Speaks 100 Day Kit for Young Children (pdf) and the 100 Day Kit for School Age Children (pdf)  were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA .

Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator.

Advocacy

Advocates for Autism of Massachusetts (AFAM)  
Advocates for Autism of Massachusetts formed in 2004 to address the need for public advocacy on behalf of individuals, families and professionals who have or deal with people of Autism Spectrum Disorders.
217 South Street
Waltham, MA 02453
Phone: 781-891-6270
Email: [email protected]

Massachusetts Advocates for Children (MAC) 
Provides support to parents of children with autism, advocates, educators, service providers and lawyers by providing information about the legal rights governing the education of children with autism, services available, and strategies for ensuring that a child receives services that meet his/her needs.
Autism Special Legal Support Center
25 Kingston Street, 2nd Floor
Boston, MA 02111

Phone: 617-357-8431

The Autism Special Education Legal Support Center
Operates a hotline that offers free advocacy assistance, referral and answers to questions about educational rights of children on the autism spectrum.

Federation for Children with Special Needs
Provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. Also provides information about special education laws, IEP development and parent information guides, advice, access to advocacy, and statewide parent workshops.
The Schrafft Center 529 Main Street, Suite 1M3
Boston, MA 02129
Phone: 617-236-7210
Toll Free: 800-331-0688 (in MA)
Email: [email protected]

Clinics

Lurie Center for Autism
Interdisciplinary program designed to provide services in the evaluation and treatment of children and adults with autism, pervasive developmental disorder and related disorders.
Mass General Hospital
1 Maguire Road
Lexington, MA  02421
Phone: 781-860-1700
Email: [email protected]

Integrated Center for Child Development (ICCD)
Multi-disciplinary center offering neuropsychological, behavioral, medical, and education assessments and services in Boston and the greater New England area. ICCD offers evaluative and treatment options to individual presenting with a variety of developmental challenges including autism and autism spectrum disorders, learning disabilities, genetic disorders and developmental disabilities, ADD/ADHD, psychiatric disorder and neurological injuries.
193 Oak Street, Suite 1
Newton, MA 02421-3114
Phone: 617-658-5600
Email: [email protected]

Housing

Autism Housing Pathways 
Was created to provide information, support, and resources for families who seek to create secure, supportive housing for their adult children with disabilities. Check website for housing opportunities and future workshops.
22 Willdale Road
Winchester, MA 01890
Contact:  Catherine Boyle
Phone: 617-893-8217

Services / Providers

Autism Speaks – Family Services  
Links to services including adult services, advocacy, legal, health services and more.

AANE Autism Spectrum Diagnosis Directory 
This Directory includes professionals who conduct evaluations to determine whether or not a person meets the criteria for an Autism Spectrum diagnosis.

Toolkits

ATN/AIR-P Parent’s Guide to Applied Behavior Analysis
ATN/AIR-P Introduction to Behavioral Health Treatments
Autism Speaks Parent’s Guide to Toilet Training in Autism

Transition

Transition to Adulthood Toolkit (provided by Autism Speaks)
Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.

Entering Adulthood  

Autism Science Foundation. Includes steps for creating a transition plan.

Other

SPED Child & Teen 
Lists Autism/Aspergers programs, services, and events in Massachusetts and New England.

Diagnostic Criteria
From the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5)

University of Texas Austin Ultimate Resource Guide for STEM Students With Autism 
Resources for students with autism who want to pursue their passion for science, technology, engineering, or mathematics.

Other Information:

Special thanks to Cariann Harsh of the Autism Division of the Massachusetts Department of Developmental Services for providing information about the description of autism, Medicaid Autism Waiver Program and the seven Autism Support Centers.

Fact Sheet last updated on: 2/14/2023

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Disclaimer: INDEX is pleased to provide you this information. Please note,  this information is not comprehensive, nor is it intended to take the place of professional advice. We encourage you to check other resources of such information. No endorsement by the University of Massachusetts Chan Medical School, DisabilityInfo.org,  INDEX, or affiliates, should be inferred. We reserve the right to remove, to modify, or to add any information at any time, for any reason, and without notice.

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