Autism Spectrum Disorders/Asperger's Syndrome

Autism Spectrum Disorder (ASD) is a developmental disability of the brain characterized by difficulties in verbal and nonverbal communication, social interaction, and repetitive and/or restrictive patterns of behavior or interests. There is no way to discern someone has ASD simply by their looks and "spectrum" refers to the range and severity of symptoms that present. To receive a diagnosis of autism spectrum disorder, symptoms must be present beginning in early childhood (symptoms present in first two years) and impact the individual's ability to function in multiple settings such as social, academic, and later in life, occupationally. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), ASD is characterized by impairments in three categories: 1) verbal and nonverbal language and communication, 2) social interaction impairment, and 3) atypical and ritualistic patterns of behavior and interests.

Individuals with ASD may show delays in spoken language, and in some instances, intellectual disabilities are present. A person with autism may have difficulty with shared attention or sharing emotions and/or interests with others. Individuals may also display repetitive or unusual uses of verbal language such as echolalia, the meaningless repetition of words the person hears. Additionally, it can be more difficult for people with ASD to understand nonverbal behaviors, such as facial expressions, body language, gestures, and tone of voice.

Individuals with ASD may appear uninterested or unable to initiate or sustain conversation; therefore, engaging in social interactions can be challenging. They may show significant difficulty in maintaining relationships, which may look like a lack of interest in other people or age-appropriate social activities. Some individuals may have strong attentional focus on one specific area of interest, for example different types of cars, and have a difficult time shifting to other activities or discussions. Other individuals may have narrow and intense interests, and may display restricted, repetitive, and/or stereotyped patterns of behavior or activities. They may be less interested in activities of same-aged peers, which can then lead to greater social difficulties. Some forms of ASD may not be diagnosed until later in childhood when social issues become more apparent and begin to impair functioning

ASD is also associated with adherence to rigid and non-functional routines or rituals, such as stacking, sorting, counting, etc. Repetitive motor or body movements (i.e. hand or finger flapping) may also be present. Children and adults with ASD may also appear preoccupied with certain parts of an object rather than the whole; for example, spinning the wheel of a toy car repeatedly. Some individuals with ASD have sensory integration difficulties, which can present as being either hypersensitive or under responsive to light, sound, touch, and taste.

Such symptoms vary significantly from one person to another and every individual with autism is unique. Autism is referred to as a “spectrum,” as these symptoms impact the functioning of an individual in different ways.

What is the difference between Autism, Asperger’s syndrome, and PDD-NOS?

In the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), autistic disorder, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified (PDD-NOS) were separated into different categories. In the newest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) released in May, 2013, the autism spectrum disorders are no longer separated into various diagnoses and are instead captured under the umbrella diagnosis of “Autism Spectrum Disorder.” Research estimates that about 90% of children who would have received an autistic disorder, Asperger’s syndrome, or PDD-NOS diagnosis previously would also receive a diagnosis of autism spectrum disorder within the new DSM-5. The new version of the DSM does not include language delays as a criterion for diagnosis, as was in the previous version. Researchers and developers felt that because language delays could occur for many reasons and were not consistent across the autism spectrum, it should not be required for diagnosis.

In the previous DSM-IV, autistic disorder, sometimes referred to as “classic autism,” was characterized by impairments in three categories: 1) verbal and nonverbal language and communication, 2) social interaction, and 3) atypical and ritualistic patterns of behavior and interests. Due to the significant language delays, autistic disorder was usually diagnosed before the age of three. Individuals who were diagnosed with Asperger’s Syndrome were differentiated because there was minimal to no language delay and did not show significant cognitive delays. Pervasive developmental disorder not otherwise specified (PDD-NOS) was typically given when an individual met many but not all of the criteria for either autistic disorder or Asperger’s syndrome. A PDD-NOS diagnosis may capture a severe and pervasive impairment in the development of reciprocal social interaction. This may present with impairments in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities.

* Note: The new DSM-5 includes a new diagnosis, social communication disorder (SCD), which will not be included under the autism spectrum diagnosis. This new diagnosis will capture persistent difficulty with verbal and nonverbal communication that is not due to low cognitive ability and may be indicated by delayed development and use of spoken and written language. Individuals with social communication disorder have significant problems using verbal and nonverbal communication for social purposes, leading to impairments in their ability to effectively communicate, participate socially, maintain social relationships, and/or perform academic or occupational functions. Unlike individuals with autism spectrum disorder, individuals with social communication disorder will not also show restricted, repetitive patterns of behavior, interests or activities. Some individuals who previously were given diagnoses such as PDD-NOS, nonverbal learning disorder, or Asperger’s syndrome under DSM-IV may instead receive a social communication disorder under DSM-5. In accordance with DSM-5 an autism spectrum disorder must be ruled out for social communication disorder to be diagnosed.

What causes ASD and who is likely to be affected by it?

Autism spectrum disorders are caused by complex genetic and biological factors that are still being investigated. As of yet, there are no definite causes for autism.

Research suggests that several genes may be involved in autism spectrum disorders. Some genetic variability, either inherited or spontaneously present, can affect brain development and the way brain cells communicate. Research is continuing to explore whether factors such as viral infections, complications during pregnancy, and air pollutants play a role in the development of autism spectrum disorders. There has been no reliable evidence supporting a link between childhood vaccinations and autism spectrum disorders (Mayo Clinic, 2014).

In 2018, the CDC reported that 1 in 59 children in the United States are diagnosed with an autism spectrum disorder. ASD occurs four times more often in boys than in girls. The prevalence of ASD diagnoses has grown extensively as health care professionals have a much better understanding of recognizing the disorder and therefore diagnosing at a much earlier age (as early as 12 months).

What are some early warning signs for ASD?

Every individual is different and it is normal for children to develop at slightly different rates. It is extremely helpful for parents to note their child’s physical, social, and emotional developmental milestones and consult with their physician about their growth. Symptoms of ASD often are present as early as 12 months of age. Paying close attention to developmental milestones can allow for earlier detection of ASD, which can lead to earlier identification and more successful treatment interventions for the child. Speak with your physician if your child is not meeting typical developmental milestones or if you notice the following behaviors or signs:

  • Delays in early social behaviors, such as:
    • Smiling
    • Responding to name
    • Looking at faces
    • Limited or inappropriate expression of emotions
    • Initiates very few interactions with parent
    • Seeks less physical contact
    • Does not imitate parent, i.e. play or facial expressions
  • Delays in communications, such as:
    • Eye contact
    • Vocalizations (cooing, babbling, full words)
    • Nonverbal gestures (i.e. pointing, showing, waving, reaching)
    • Difficulty following gaze or pointing of parent (joint attention)
  • Repetitive and restrictive patterns of behaviors, such as:
    • Repetitive or limited use of toys in manipulative play
    • Atypical play and object exploration
    • High rates of atypical body movements (i.e. hand flapping, rocking, hair pulling)
    • Focus on narrow interests, activities, or toys

What are some other signs to identify ASD later in in life?

Sometime behaviors associated with ASD are not apparent or detected until later in an individual’s life. Caretaking for an adult with ASD can be challenging and it is important for there to be open communication between the adult with ASD, family, care takers, partners, and health care providers. (NICE, 2012). Similar to the detection during childhood the following behaviors are common in adolescents and adults who may be diagnosed with ASD:

  • Difficulty with social behaviors, such as:
    • Limited or inappropriate expression of emotions
    • Less likely to initiate social interaction
    • Inflexible to situational changes or transitions
  • Difficulty with communication, such as:
    • Limited eye contact
    • Vocalizations (repetition of words or conversations)
    • Nonverbal gestures (i.e. pointing, showing, waving, reaching)
    • Difficulty with directed attention
  • Repetitive and restrictive patterns of behaviors, such as:
    • Repetitive use of certain objects
    • High rates of atypical body movements
    • Focus on narrow interests, activities, or conversation topics

Are there additional mental health conditions or learning disorders associated with ASD?

Sometimes individuals with autism spectrum disorders face additional mental health concerns and learning issues. Often times, individuals with ASD may struggle with emotional control and regulation. They may become overly frustrated or excited and have difficulty expressing these emotions. Children may appear distressed or tantrum for non-obvious reasons. Changes in routines or schedules may especially incite negative moods.

Depression is also fairly common in older children and adults with ASD. They may feel helpless, frustrated, and socially isolated. A sense of hopelessness or depression can develop if individuals desire to have meaningful friendships or relationships, yet have great difficulty in making such connections.

Anxiety can also be present for individuals with ASD. Many of the rigid, repetitive, and obsessive-compulsive behaviors associated with ASD generate from underlying feelings of anxiety. Events or actions that may break typical routines or behaviors may cause significant feelings of distress. This distress in children is often expressed by crying or tantruming. This distress in adult may be expressed through changes in mood, heightened or easy frustration, and difficulty calming down.

Individuals with ASD often have learning challenges associated with their deficits in language and communication. Sometimes learning disorders, such as nonverbal learning disorder, can co-occur. Individuals with ASD may also have difficulties sustaining attention, which can create additional challenges in education and learning.

What types of treatment interventions are available?

Though there is no “cure” for autism spectrum disorder, some treatments are helpful in reducing problematic behaviors and increasing desired skills. Treatment interventions show most positive results when they are implemented across all environments: school, home, personal life, work, etc. Some of the most common treatment interventions are listed below:

  • Behavioral interventions – Upon receiving an autism diagnosis, behavioral therapies can be effectively used in school and at home, by teachers, therapists, and parents alike. Behavioral methods target reducing problem behaviors or symptoms that impact overall functioning. Applied Behavioral Analysis, or ABA, is the most widely accepted and utilized behavioral therapy for children on the autism spectrum. ABA focuses on the way in which learning takes place and is reinforced in the child’s environment. Small rewards and positive reinforcements are strategically used to promote learning of various skills and language. Children who received applied behavioral therapy can show improvements in their communication abilities, social relationships and social skills, self-care, academic skills, imaginative play, and motor abilities. ABA can be utilized both in school and at home by trained teachers and behavioral therapists. Parents may also learn to implement ABA techniques with their children. It is most helpful to have early diagnosis and intervention following developmental delays in language and social interactions. 
  • Educational interventions –Schools can help design learning goals and treatment plans for an individual needs. Often times, schools will implement behavioral strategies based on the various ABA principles of learning. School-based counseling can help an individual manage the demands of the classroom, playground, and transition from school to home.
  • Speech and language therapy – Speech therapy can be particularly helpful to individuals on the autism spectrum who have language and social communication delays.
  • Occupational therapy – Occupational interventions can help children with ASD gain practical life skills to help live more independently. Occupational therapists can design treatment plans to improve self-care skills (i.e. personal hygiene), fine motor abilities (i.e. cutting, writing, using utensils), and communication skills. Occupational therapy is also used with older children, teens, and adults with ASD as a means for prevocational training.
  • Social skills training – Social skills can be promoted through various training programs. Social skills groups, peer mentoring, social stories, and video modeling offer social skills training opportunities.
  • Anger management interventions – Thinking about situations where anger or frustration might arise, learning skills and behaviors to prevent angry outbursts, and relaxation techniques.  
  • Parent training and guidance sessions – Learning about your child’s diagnosis, individual needs, and strengths can be extremely valuable and empowering to both child and parent. Parents should be educated on the techniques and therapies their child receives in order to support the child’s growth across settings.
  • Biological interventions (medication) – while there are no medications to address the core symptoms of ASD, medications can help decrease secondary symptoms such as irritability, hyperactivity, anxiety, depression, or attention problems.

Information in the article above was drawn from the following sources:

Resource Organizations » Autism Spectrum Disorders

In Massachusetts

Advocates for Autism of Masschusetts

781- 891-6270

Email: AFAMoffice@yahoo.com

Advocates for Autism of Massachusetts strives to assure the human and civil rights of individuals of all ages across the entire Autism Spectrum and promote the availability of essential supports so that they may live fully and enjoy the same opportunities as other citizens of the Commonwealth. Advocates for Autism of Massachusetts provides education to individuals with ASD, their families and other AFAM members/supporters to be effective, vigorous agents of change. In addition, this organization provides legislative advocacy on behalf of individuals and families of individuals with Autism Spectrum Disorders, and their website provides up to date information on legislative changes impacting these individuals and their families. They also provide a newsletter and host events to raise awareness about the need for services for individuals with Autism Spectrum Disorders, including advocacy for the growing and anticipated number of adults who will need support.

Asperger/Autism Network (AANE)

(617) 393-3824

Email: info@aane.org

The Asperger/Autism Network (AANE)'s mission is to foster awareness, respect, acceptance, and support for individuals with Asperger Syndrome and related conditions and their families. Their Information Line (617-393-3824) provides parents, adults with AS, teachers and professionals with information, support, resources and referrals. Additionally, they have three Family Grant Programs, funded by the generosity of the Edwin Philips Foundation, the Doug Flutie Jr. Foundation for Autism, and an esteemed private donor. Support and social groups are also offered at their Watertown location, as well as throughout Massachusetts and other Northeastern states. They also have articles related to college life for those who plan on attending or applying for college.

Autism Alliance of Metrowest

508-652-9900

Email: AutismAlliance@Advocates.org

The mission of the Autism Alliance of MetroWest, Inc. is to provide families in the MetroWest area of Boston with information, education and support. The organization plans and implements programs and events to aid families while increasing public awareness regarding autism. They currently service 1,300 families and specialists in the field of Autism.

Autism Connections

413-529-2428 (Easthampton)

413-732-0531 (Springfield)

413-774-3495 (Greenfield)

413-443-4780 (Pittsfield)

413-585-8010 (Hadley)

Email: info@pathlightgroup.org

Autism Connections provides support, information, and practical help for individuals with Autism Spectrum Disorders and their families living in Western Massachusetts. Community Resources was founded in 1989, and continues to be directed by, parents of children with autism. Their goal is to help families, schools, professionals, agencies and communities understand autism, promote the well-being of individuals with autism, and foster their inclusion in the community. They offer support groups, a referral directory, and educational advocacy, as well as a multitude of information and resources.

Autism Resource Center of Central Massachusetts

508-835-4278

Email: autism@HMEA.org

The Autism Resource Center was conceived in 1996 by a group of parents to serve primarily as an information and referral service for children and families affected by disorders within the Autism Spectrum. The Center services the eastern portion of DDS Central-West Region. This encompasses North Central, Worcester, and South Valley areas. This program is funded by the Department of Developmental Services (DDS) and administered by Horace Mann Educational Associates, Inc. The Autism Resource Center is designed to help parents, educators, service providers, and medical professionals provide effectively for those diagnosed within the Autism Spectrum.

Autism Society of America

MA Chapter: 781-237-0272 x 17

National Office: 800-328-8476

Email: info@autism-society.org

The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum and their families, to be fully participating, included members of their community. Education, advocacy at state and federal levels, active public awareness and the promotion of research form the cornerstones of ASA's efforts to carry forth its mission. The Massachusetts Chapter of ASA can provides information about Autism as well as information regarding available services for Autism across the state of Massachusetts.

Autism Support Center- Northeast ARC

Office- Toll Free in MA: 800-728-8476

Office: 978-777-9135

Email: asc@ne-arc.org

The Autism Support Center (ASC) was created in 1991 to support parents and professionals who expressed a need for assistance finding information and support about autism, pervasive developmental disorder (PDD) and Asperger's Syndrome. The Autism Support Center empowers families who have a member with autism or related disorder by providing current, accurate, and unbiased information about autism, services, referrals, resources, and research trends. Support groups are also offered throughout the geographic area for parents and siblings.

Community Autism Resources

508-379-0371 (Swansea Office)

774-381-7919 (Brockton Office)

Email: CAR@community-autism-resources.com

Community Autism Resources is a family created and oriented community services organization. The valuable input received from families and professionals sustains their continued focus on assisting and educating families and professionals so that they can better meet the needs of persons with Autism Spectrum Disorders (ASD). They promote building collaborative relationships with those involved in an effort to provide comprehensive and individually tailored supports. The organization also offers a variety of services and events for families, professionals and community members at no cost. Their area of coverage includes most of Southeastern Massachussetts, the Cape, South Shore, and the Islands.

Disabilities Resource Network, Jewish Family & Children's Service (JF&CS)

781-647-JFCS (5327) Waltham

781-419-6777 Canton

508-755-7460 Worcester

617-224-4127 Brighton

The Disabilities Resource Network (DRN) is an information and referral service for people with disabilities throughout Greater Boston. The goal of the DRN is to help people with disabilities find programs and services within the community that are accessible and offer opportunities for the fullest level of participation possible. An experienced professional works with callers to find services and programs related to religious life, education, social/recreational, housing, legal/advocacy, vocational, or any aspect of life in the community. This service is non-sectarian and free of charge.

Exceptional Lives Resource Directory

1-844-354-1212.

Email: info@exceptionallives.org

This is a user-friendly Disability Resource Directory, a searchable online database of disability programs and providers in Massachusetts. It’s designed for parents and caregivers of children or adults with developmental disabilities – and professional care providers that serve them. It contains more than 1,200 resources in 54 service categories in areas such as therapy (including speech, PT, OT, and ABA providers), education, employment (including transition & vocational programs), medical & clinical, adult programs (including housing & transportation services), parent & caregiver support, legal help, social & recreational (including after-school programs & summer camps), sibling support, family grants, and more.You can do quick and easy searches by zip code, age, disability, and service type. You can see if a service is covered by MassHealth, or if a facility is wheelchair-accessible. Our initial disability types include ADD/ADHD, Autism spectrum disorder, bipolar disorder, cerebral palsy, Down syndrome, and intellectual disability. With each search you get a printable resource list and a visual resource map displaying options in your local area – or across the state.

 
 

Family Autism Center, South Norfolk County ARC

781-762-4001 x 310

Email: info@arcsouthnorfolk.org

The Family Autism Center was created in 1996 by SNCARC. We have a Steering Committee made up of family members of children and adults with Autism Spectrum Disorders (ASD). Their mission is to provide advocacy, supports and services to people with ASD and to their families.

Family TIES of Massachusetts

800-905-8437

For callers outside of Massachusetts, call 508-792-7880 Ext. 2337.

Family TIES of Massachusetts is a program for families of children with special needs and chronic illness, and the professionals who support them. Family TIES offers parent-to-parent support, information and referral services, and workshops to ensure that parents feel confident in caring for their children's special needs. The website offers information about services and supports, as well as personal experiences from early intervention through transition to adulthood. In addition, Family TIES offers regional coordinators who help parents of children with special needs get connected to support groups in their area.

First Signs, Inc.

978-346-4380

Email: FirstSigns1@gmail.com

First Signs is dedicated to the early identification of and intervention for children with autism and other related disorders. The organization aims to educate parents, healthcare providers, early childhood educators, and other professionals in order to ensure the best developmental outcome for every child. They focus on improving screening and referral practices to lower the age at which young children are identified with autism and other related disorders.

Greater Massachusetts Special-Needs Events

508-303-3424

Email: info@spedchildmass.com

SPED child and teen massachusetts works to gather resources for parents with children on the autism spectrum and diagnosed with ADHD. Resources include support groups, listservs, disability organizations, upcoming local events and opportunities for parents and their children. They hold informative workshops with professionals, parents, and other agencies in the state.

 

Massachusetts Act Early

The Massachusetts Act Early Coalition works to strengthen state and community systems for the early identification and intervention for children with signs of developmental disabilities, such as autism spectrum disorders.  The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth. Massachusetts Act Early aims to educate parents and professionals about healthy childhood development, early warning signs of developmental disorders including autism spectrum disorder, the importance of routine developmental screening, and timely early intervention whenever there is a concern.

Massachusetts Advocates for Children: Autism Special Education Legal Support Center

617-357-8431

617-357-8431 x 3224 (Helpline)

Email: info@massadvocates.org

Since its inception in 2002, the Autism Special Education Legal Support Center of the Massachusetts Advocates for Children has become a vital force within the autism community, providing training, legal assistance, advocacy, and services to thousands of parents and professionals to ensure that children with autism overcome lowered expectations and receive equal educational opportunities. The Center also provides intensive training and legal advocacy for parents who face cultural and language barriers in selected Haitian and Latino communities.

Massachusetts Department of Mental Health

617-626-8000

TTY: 617-727-9842

Emergency/Crisis Line - Available 24 Hours (877) 382-1609

DMH Information and Resource Line Voicemail Box (800) 221-0053

Email: dmhinfo@state.ma.us

The Department of Mental Health, as the State Mental Health Authority, assures and provides access to services and supports to meet the mental health needs of individuals of all ages, enabling them to live, work and participate in their communities. This critical mission is accomplished by working in partnership with other state agencies, individuals, families, providers and communities.

New England Index: Information on Disabilities Exchange

781-642-0248

Toll Free: 800-642-0429

TTY: 800-764-0200

Information clearinghouse for people with disabilities. Includes database of disability programs and services in MA; fact sheet library on disabilities; recent local and national news about disabilities; and info on multicultural competency. Interested parties can also submit a request online or call the phone numbers above for specific resources in their area.

INDEX helps people with disabilities find the information they need. They collect and keep up-to-date information on programs, providers and services in Massachusetts that have something to offer to people with disabilities. INDEX is a project of the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School.

 

School Psychiatry Program and MADI Resource Center

For Children and Adolescents: 617-726-2725

For Adults: 617-724-7792

Email: moodandanxiety@partners.org

Schoolpsychiatry.org is a joint project of the School Psychiatry Program and the Mood & Anxiety Disorders Institute (MADI) Resource Center, both of the Department of Psychiatry at Massachusetts General Hospital (MGH). Schoolpsychiatry.org is committed to enhancing the education and mental health of every student in every school. The Mood & Anxiety Disorders Institute (MADI) Resource Center translates the latest research advances into practical information, helping people work with their clinicians toward the most accurate diagnosis and best possible treatment results. The Center also offers resources and support to help people manage daily living with mood and anxiety disorders and cope with the disorders' effects on family relationships.

The Commonwealth of Massachusetts Disabled Persons Protection Commission (DPPC)

617-727-6465 x 211

888-822-0350 V/TTY

The mission of the Disabled Persons Protection Commission (DPPC) is to protect adults with disabilities from the abusive acts or omissions of their caregivers through investigation, oversight, public awareness and prevention.The DPPC is an independent state agency and the jurisdiction of DPPC includes adults with disabilities between the ages of 18 and 59, who are within the Commonwealth whether in state care or in a private setting and who suffer serious physical and/or emotional injury through the act and/or omission of their caregivers. The DPPC fills the gap between the Department of Children and Families (DCF) (through the age of 17) and the Executive Office of Elder Affairs (EOEA) (age 60 and over).

The Lurie Center (formerly LADDERS)

781-860-1700

Email: luriecenter@partners.org

The Lurie Center (formerly LADDERS) is a highly successful program designed to evaluate and treat children and adults having a wide variety of developmental and handicapping conditions. Our mission is to provide the highest quality clinical, social and support services to those diagnosed with autism, pervasive developmental disorders and other developmental disabilities.
LADDERS, a program of Mass. General Hospital, is unique because of the population it serves and because it uses a multidisciplinary approach which begins with comprehensive medical evaluations and extends to supporting the well-being of patients and families. Nurses, social workers, speech pathologists, occupational therapists, physical therapists, neuro-psychologists, special education professionals and family members are involved in the treatment processes in addition to the physicians. Each has a depth of expertise in their respective field.

Understanding Our Differences

617-559-6075

Email: info@UnderstandingOurDifferences.org

Understanding Our Differences, Inc. is a nonprofit organization working to increase information, understanding and acceptance of people with disabilities and individual differences in schools. Since 1978, Understanding Our Differences has touched the lives of thousands of children and adults in Newton, Massachusetts through the delivery of a unique and creative disability awareness curriculum in collaboration with the Newton Public Schools. This award-winning program has been disseminated to more than 200 schools and organizations nationwide.

Outside Massachusetts

Organizations with hotlines

Mental Health America

1-800-273-TALK (8255) - 24-hour crisis center

Office: 703-684-7722

Toll Free: 800-969-6642

Mental Health America (formerly known as the National Mental Health Association) is the nation's leading community-based nonprofit dedicated to addressing the needs of those living with mental illness and to promoting the overall mental health of all Americans. Their work is driven by the commitment to promote mental health as a critical part of overall wellness, including prevention services for all; early identification and intervention for those at risk; integrated care, services, and supports for those who need it; with recovery as the goal.

Organizations without hotlines

Autism Speaks

212-252-8584 (New York Office)

(888) 288-4762 (Autism Response Team from 9am-1pm)

Email: familyservices@autismspeaks.org

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. It is our firm belief that, working together, we will find the missing pieces of the puzzle. Autism Speaks. It's time to listen.

CDC: National Center on Birth Defects and Developmental Disabilities

800-232-4636

The mission of the CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) is to promote the health of babies, children and adults and enhance the potential for full, productive living. To achieve its mission, the Center works to identify the causes of birth defects and developmental disabilities; help children to develop and reach their full potential; and promote health and well-being among people of all ages with disabilities, including blood disorders. The NCBDDD site features an informational "A-Z index" of birth defects, blood disorders, and disabilities. The infant health and child development section discusses pediatric mental health topics such ADHD, Autism Spectrum Disorder, Intellectual Disability, and Down Syndrome.

 

 

Disability and Abuse Project

(818) 230-5156

Email: nora@disability-abuse.com

The focus of this organization is to help prevent the physical, sexual, and emotional abuse of people with developmental or intellectual disabilities. Their mission is to disseminate information on how to reduce the risk of abuse, to promote healing for victims, and to seek justice for those who have been victimized. The Disability and Abuse Project is a function of Spectrum Institute, a nonprofit educational corporation.  The Project works with nonprofit organizations, media, government agencies, and individual advocates. The website contains information on books and resources relevant to issues involving disability and abuse.

Do To Learn

919-755-1809

Do To Learn is an online collection of hands-on resources for children with autism, Asperger's Syndrome, and learning disabilities. Most of the materials on the website are free; they include games, puzzles, songs, and charts that help children learn social skills, emotion recognition, verbal communication, and other important skills. There are also extensive resources for teachers, such as classroom activities and organizational plans. In addition, the website offers information to parents on autism spectrum disorders and learning disabilities.

Organization for Autism Research

866-366-9710

Email: info@researchautism.org

Organization for Autism Research is the only autism organization which focuses solely on applied research. Putting research to work providing answers to questions for those confronted directly and indirectly by autism and funding research studies that investigate treatments, educational approaches, and statistical aspects of autism.

Sibling Support Project

425-362-6421

Email: info@siblingsupport.org

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The Sibling Support Project believes that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, they want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues. The mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong, and ever-changing concerns through workshops, websites, and written materials. Visit the website for local listings of "Sibshops", i.e. sibling support programs.

The Brain and Behavior Research Foundation

Main Line: 646-681-4888

Toll Free: 800-829-8289

Email: info@bbrfoundation.org

The Brain and Behavior Research Foundation (formerly NARSAD, the National Alliance for Research on Schizophrenia and Depression) is committed to alleviating the suffering of mental illness by awarding grants that will lead to advances and breakthroughs in scientific research. The BBR Foundation offers news on the research it funds as well as information (documents and videos) about these and other disorders in children and adults. It also provides guidance and resources for families coping with a child or parent with mental illness.