Autism

Disability/Illness Description:

There are five disorders under the umbrella of Pervasive Developmental Disorder (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development including social interactions, communication skills, or the presence of stereotyped behavior, interests and activities.” According to the current DSM IV, The term Autism Spectrum Disorder (ASDs) generally refers to: Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD/NOS), Childhood Disintegrative Disorder and Rett’s Syndrome.

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 disorder 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

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’s Association of New England (AANE) – The Asperger’s Association of New England’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.

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 – 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.

The Autism Division has also started a Medicaid Autism Waiver Program for children under the age of nine. The program is currently closed to new applicants.  There are currently 130 children served in the Autism Waiver Program.  This Program provides in-home behavioral services and related supports for the first three years and then offers behavioral consultations and other ancillary supports up until the child’s ninth birthday.  The Autism Division will hold another open enrollment period in calendar year 2012, please be sure you are on your local Autism Centers mailing list to receive information about the next open enrollment period.  More information on the Autism Waiver Program.

Note that the Autism Division of DDS will reopen the application process for the Autism Waiver Program.  The first date to mail in applications is Tuesday, October 17, 2017. The last date to mail applications is Tuesday, October 31, 2017.  Applications for the Autism Waiver Program must be postmarked between these dates to be considered for eligibility.
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

Autism Insurance Resource Center
Amy Weinstock, Director
The Autism Insurance Resource Center 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 New England INDEX, 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. Contact info@disabilityinfo.org for issues related to insurance coverage for autism treatment & services.
Sign up to receive informational mailings, invitations to events, and updates: Sign up for 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

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 (pdf) and the 100 Day Kit for School Age Children Asperger 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.

Services / Providers

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

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: office@AFAMACTION.org

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. 617-357-8431 X 224

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.
529 Main Street, Suite 1M3
Boston, MA 02129
Phone: 617-236-7210
Toll Free: 800-331-0688 (in MA)
Email: fcsninfo@fcsn.or

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.

Transitioning  Into Adulthood (Autism Science Foundation) – Includes steps for creating a transition plan.

Housing

Autism Housing PathwaysWas 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

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: luriecenter@partners.org

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: info@ablspartners.org

Toolkits

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

Other

SPED Child & Teen – Lists autism/Aspergers programs, services and events in Greater Massachusetts.

Other Information:

Special thanks to Cariann Harsh of the Autism Division of the Massachusett’s 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: 9/26/2017