EXPLORE RESOURCES

Knowledge is Empowerment
Everyone deserves to live fully. At the core of the Nassau Suffolk Autism Society of America’s work is our goal to influence meaningful change in support of the Autism community. Find the support you need, when you need it by accessing our resources below.

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Social Connections

Fostering a sense of community and forming connections with others is often viewed as a vital ingredient for finding happiness in life. Whether it’s acquaintances, colleagues, friends, or family – even intimate partners – each can play a significant role in enhancing our overall well-being. In the past, there was a lack of awareness surrounding individuals with Autism and their yearning for social interactions. The challenges in communication and socializing that come with an Autism diagnosis led to the misconception that those with Autism were uninterested in forming friendships or relationships. However, recent studies have debunked this myth, revealing that both children and adults with Autism express a genuine desire to connect and engage with others.

Empowering individuals with Autism by providing necessary support and accommodations for fostering social connections is crucial. It’s important to recognize that people with Autism may prefer unique ways of connecting compared to those without the condition. Having an Autism diagnosis does not equate to a desire for solitude. Addressing bullying in school and workplace settings is a significant challenge faced by many individuals with Autism. Cultivating friendships can serve as a powerful tool in combating this issue.

Considerations for supporting friendships and relationship development for people with Autism:

  1. SELF-ADVOCACY
    Embracing self-advocacy is essential for fostering social connections, especially for individuals on the Autism spectrum. Communicating one’s needs, preferences, and boundaries is crucial in building meaningful relationships. By expressing what brings joy and discomfort, others can better understand and support these differences. Ultimately, promoting self-awareness can lead to more fulfilling and respectful interactions with others.
  1. MISCOMMUNICATION
    One challenge faced by individuals with Autism is the impact of miscommunication on their ability to form and maintain friendships. Due to variations in neurobiology, those with Autism may struggle to instinctively grasp and apply subtle social cues, creating difficulties in navigating the unwritten rules of social interaction known as the hidden curriculum. To overcome these challenges and enhance their social experiences, individuals can actively seek out opportunities for social engagement, engage in discussions about social norms, and participate in classes or support programs aimed at decoding the hidden curriculum. By taking proactive steps to understand and navigate these nuances of social interaction, individuals with Autism can make meaningful connections more easily and enjoy more fulfilling relationships.
  1. COMMON INTERESTS AND EXPERIENCES
    Discovering common interests and experiences often forms the foundation of friendships. Individuals with Autism often possess deep passions in specific areas. Engaging in clubs that cater to similar interests can be a valuable avenue to build connections and cultivate friendships. For instance, attending museum workshops, volunteering at zoos or animal rescues, enrolling in classes aligned with personal interests, or participating in local events focused on shared hobbies are all excellent ways to connect with like-minded individuals and forge lasting relationships.
Intervention and Therapies

Not long ago, individuals with Autism were often confined to institutions. Back then, professionals had limited knowledge about Autism compared to now, and specialized services and support were scarce. Thankfully, the situation has improved significantly. Today, with the right assistance, training, and resources, children with Autism can thrive and develop at their own pace, just like everyone else.

Although there is currently no cure for Autism, various treatment and educational strategies can be utilized to tackle the obstacles linked with the condition. Interventions can reduce disruptive behaviors, while education can impart self-help skills to enhance independence. It’s important to note that just as Autism presents differently in each individual, there is no one-size-fits-all treatment approach. By harnessing the positive aspects of Autism, individuals can leverage their strengths. Early intervention tailored to an individual’s unique characteristics is crucial for optimal outcomes.

Throughout the history of the Autism Society, parents and professionals have been confounded by conflicting messages regarding which treatment options are appropriate for children and adults who experience Autism. As each person responds to treatment differently, we cannot endorse any one treatment or program. Families should educate themselves about all options and choose what they feel is in the best interest of their child and family, based on their experience and what resources are available.

Related Approaches

While early educational intervention is key to improving the lives of people with ASD, some parents and professionals believe other treatment approaches play an important role in improving communication skills and reducing behavioral symptoms associated with Autism. These complementary therapies might include music, art, or animal therapy, among many others, and might be undertaken on an individual basis or through an educational program.

Evaluating Options

After identifying available treatments, interventions, therapies and other services, you’ll need to choose which ones are best for you or your child. Here are some considerations to help you make your decision:

  • What is the purpose of this theory/practice?
  • What do I have to do to benefit from the theory/practice, and what are its lasting effects?
  • For how long must my child be involved in this theory/practice to benefit from it?
  • Is there any physical or psychological harm this theory/practice could do to my child?
  • What are the personal costs of time and money that I will have to endure, and can I be reimbursed for these expenses?
  • How do I know that the costs of this theory/practice are fair and reasonable?
  • Are the theoreticians or practitioners competently and appropriately trained and prepared to implement the provisions of the theory or practice? How is their competence assured?
  • What steps will be taken to protect my privacy?
  • Are there any legal actions, current or past, against promoters, consumers or practitioners of the theory/practice?
  • How will the effects of this theory/practice be evaluated?
  • By choosing this theory/practice, what alternatives (proven or unproven) am I not pursuing?
  • Does this approach mesh with my child’s overall program?
  • Who has this theory positively benefited, and under what conditions?

The National Institute of Mental Health suggests the following list of questions to ask when planning a treatment program:

  • How successful has the program been for other children?
  • How many children have gone on to placement in a regular school and how have they performed?
  • Do staff members have training and experience in working with children with Autism?
  • How are activities planned and organized?
  • Are there predictable daily schedules and routines?
  • How much individual attention will my child receive?
  • How is progress measured? Will my child’s behavior be closely observed and recorded?
  • Will my child be given tasks and rewards that are personally motivating?
  • Is the environment designed to minimize distractions?
  • Will the program prepare me to continue the therapy at home?
  • What is the cost, time commitment, and location of the program?
Public Policy

Every individual deserves the opportunity to thrive and understand the laws that impact their lives. The Autism Society’s Public Policy Committee and Board of Directors collaborate to champion for laws that enhance quality of life. Through drafting legislation, the committee safeguards the rights of those with Autism and their families, while also educating the community on how these laws can make a positive difference. Let’s unite for change, right from this very point.

Autism CARES Act

The Autism CARES Act is the most comprehensive federal law addressing the urgent needs of the Autism community. Over its 17-year history, this law has resulted in a significant increase in our understanding of Autism and related neurodevelopmental disabilities. Due to a sunset provision, the law must be reauthorized by September 2024.

Autism Society’s Recommendations for Reauthorization to Congress

  • CCD Developmental Disabilities, Autism and Family Support Task Force Recommendations for Reauthorization to Congress
  • Autism Society and AUCD Issue Brief
  • Last Reauthorization Law Language (2019)
  • AUCD Issue Brief on History of the Law

Home and Community-Based Services

The Autism Society supports policies that permit those living with Autism to live in inclusive, safe, accessible, and affordable communities of their choice and be provided with a comprehensive range of support and accommodations for meaningful engagement within the community. Children and adults with Autism and their families have the right to choose the services and support that work best for them, as well as the right to choose providers of those services.

GOALS

We hope that through our support, we will:

  • Provide guidance for existing regulations regarding home and community-based services to those with Autism and their families.
  • Ensure those with Autism and their families know their rights when it comes to home and community-based services.
  • Educate and advocate for the expansion of home and community-based services.

LAWS

Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act: This law expands and coordinates existing federal efforts related to Autism including research being conducted within the National Institutes of Health (NIH), surveillance and awareness activities at the Centers for Disease Control and Prevention (CDC), and professional development and research into evidence-based interventions at the Health, Resources, and Services Administration (HRSA). It is the primary source of federal funding for Autism research, services, training, and monitoring.

  • This law is up for reauthorization by FY 2024.
  • Text of the Law

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD ACT): This Act authorizes State Councils on Developmental Disabilities, Protection, and Advocacy System, and the Association of University Centers on Disabilities to help advocate for families and provide training, legal support, and research.

  • DD Act Resource Page within the Administration for Community Living (ACL)
  • What is the DD Act in Plain Language
  • Text of the Law

Money Follows the Person (MFP): This program increases the use of home and community-based services, helps people transition out of institutions, and eliminates state barriers to long-term care through Medicaid. This law was last reauthorized for three years by the American Rescue Plan.

  • Medicaid’s MFP Resource Page

LEGISLATION

HCBS Relief Act (S. 3118/H.R. 6296): The HCBS Relief Act would provide Medicaid funds to states for two years to stabilize their home and community-based service (HCBS) delivery networks, recruit and retain HCBS direct care workers, and meet the long-term service and support needs of people eligible for Medicaid home and community-based services.

  • Text of Senate Bill (S. 3118/H.R. 6296)
  • Senator Casey’s Fact Sheet
  • Resource comparing HCBS-related proposed legislation
  • Action Alert

Better Care Better Jobs Act (H.R. 547/S. 100):  This bill (H.R.547/S. 100) expands access to Home and Community Based Services (HCBS) and provides better pay and benefits for direct care workers. Many people receive supported employment through their Medicaid waiver.

  • Text of Senate and House Bill (H.R. 547/S. 100)
  • Summary of Bill Prepared by Senate Committee Staff
  • Impacts of Better Care Better Jobs Act on Home Care and Jobs
  • Action Alert
  • CCD Comments on Bill

HCBS Access Act (HR 1493/S 762): The HCBS Access Act is designed to ensure eligible older adults and people with disabilities have a real choice of care and support options between home care and institutional care. The bill would, over time, eliminate HCBS waiting lists and the need for states to repeatedly apply for HCBS waivers.

  • Text of Senate and House Bill (H.R. 1493/S. 762)

Supporting Our Direct Care Workforce and Family Caregivers Act (S 1298): This bill would award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

  • Text of Senate Bill (S. 1298)

Recognizing the Role of Direct Support Professionals Act (H.R. 2941/S. 1332): This bill would require the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

  • Text of House and Senate Bill (H.R. 2941/S. 1332)
  • Action Alert
  • Letter of Support from 35 Disability Orgs

RESOURCES FOR INDIVIDUALS, PARENTS, AND FAMILIES

  • New Proposed Rule: The HCBS Access Rule (May 2023)
    • Autism Society and NACDD Toolkit
  • Information on the HCBS Settings Rule (March 2023)
    • Autism Society and NACDD Webinar Pt 1
    • Autism Society and NACDD Webinar Pt 2
  • Fact Sheet on HCBS from Disability Policy Seminar (2023)
  • Medicaid Home and Community-based Services for Older Adults with Disabilities: A Primer by Justice in Aging (Apr. 2021)
  • Information about Medicaid State Plan and Waiver Options
  • Medicaid Website: Home & Community-Based Services
Communication

The Autism Society believes that there is no one-size-fits-all approach when it comes to any kind of support or intervention, communication included. Each individual and family has the right to choose the services that best meet their individual needs, and you can learn more by reading our “Making Informed Decisions” policy.

There are many supports, tools, and methods available for individuals with Autism to be able to effectively communicate. Everyone has the right to be able to be seen, heard, and valued by sharing their thoughts, feelings, wants and needs.

Some Autistic individuals are non-speaking and/or cannot rely on verbal speech to communicate. Therapies and interventions should be evaluated with the Autistic individual and a multi-disciplinary team based on the person’s age, challenges, abilities, goals, and more.

Sensory Processing Communication Support for Kids

Some people with Autism suffer from Sensory Processing Disorder (SPD, previously known as Sensory Integration Dysfunction), a condition where the messages from the senses are not regulated appropriately. Given difficulties using language, some Autistic individuals may not be able to accurately explain and describe their experiences, leading to frustration.

Housing

Ensuring a safe living environment is important to everyone. Many adults with Autism live in their communities independently without any need for additional support. Other adults with Autism require some level of professional support to ensure their wellness and safety. Supportive housing for adults with Autism is provided in a variety of settings and with different staffing support models. Support housing can be very challenging for many adults with Autism to access.

There is limited supply for the many adults who are looking for community living support.

Every adult should be empowered to have choice and control over their living environment. The current shortage of housing options for adults with Autism has resulted in limited resources. However, these limited resources should not prohibit choice and control over the decisions of where and with whom an adult with Autism desires to live.

Types of Supportive Housing

Independent Living

Independent living means just that – individuals live in their own apartments or houses and require little, if any, support services from outside agencies. Services might be present, but limited to helping with complex problem-solving issues rather than day-to-day living skills. For instance, some people might need assistance managing money or handling government bureaucracy. Coworkers, friends, local business employees, or other community members could be integrated into a support system, whether informally through social interaction or as part of a more organized effort.

Supervised Group Home

A supervised group home typically serves several people with disabilities. These homes are often located in homes in residential neighborhoods. Trained professionals assist each resident based on their individual needs. The residents usually have jobs or attend day programming away from home during the day.

Supervised Apartment

A supervised apartment might be selected by an individual who prefers to live with fewer people, but still requires some supervision and assistance. There is usually no daily supervision in this setting, but a paid professional comes by several times a week. The residents are responsible for getting to work, preparing meals, and meeting personal care and housekeeping needs.

Shared Living

In shared living, an adult with Autism shares a private family home with dedicated caregivers. An individual, couple, or family provides services in their home. This arrangement closely replicates a private home experience and encourages familiar connections with the adult with Autism and caregivers.

Health & Wellness

Health, mental health and well-being are an essential part to living fully. The Autism Society advocates on the local, state, and federal level for individualized and equitable health care offerings for the Autism community.

Health equity is achieved when everyone has the opportunity to be as healthy as possible. Healthcare inequities are seen across disability communities, including Autism, and are exaggerated by social and economic factors. These inequities can result in differences in length and quality of life, disease rates, access to treatment, disability, and death.

Recent data shows the people with Autism have less access to health care, an increased risk for co-morbidities, and have more anxiety and depression, than people without disabilities. Take action to address you or your loved one’s health care needs.

Take action to support your health:

  • Find a primary care doctor that you like and trust that has experience working with Autistic individuals.
  • Make annual visits for checkups and bring any questions to go over in your appointment.
  • Learn more about your insurance benefits and what is covered or not covered under your plan.
  • Connect with a local Autism Society affiliate in your area or contact our National Helpline to learn more about disability systems, benefits, services and supports in your state.

Here are a few helpful tips to help stay healthy:

  • Practice healthy food choices.
  • Include moderate activity in routines.
  • Develop a healthy sleeping habit and schedule naps as needed.
  • Individuals with Autism should be their own advocate and communicate with their family or doctor about how they’re feeling.

Healthcare Transitions

Transitioning from a teenager to adult is a big step. There are many important factors that are involved, especially when it comes to health and health care. The transition from seeing a pediatrician to a doctor that only handles adult medical needs is quite a change. However, this transition is a part of the road to independence and self-advocacy. Health and well-being are essential to successful independence in school, work, and other social activities.

Here are a few tips to help prepare for this new phase of life:

  • Have a conversation with your family and current physician about next steps.
  • Stay organized! Determine how you will organize your information (e.g. digitally with a phone or with a binder/notebook).
  • Find a doctor who is a good fit and understands individual needs.

For more resources on Health Care Transition visit the links below.

Mental Health

Mental health and well-being is an important part of everyday life. The way we think, feel, or react can have a huge impact on our day and overall quality of life. Research has indicated that approximately 70 percent of those with Autism have at least one or more co-occurring mental health conditions (Drexel, 2016). The National Institute of Mental Health (NIMH), states “in adults, some ASD symptoms can overlap with symptoms of other mental-health disorders, such as anxiety or attention-deficit/hyperactivity disorder (ADHD),” (NIMH 2018).

Because the intersectionalities between Autism and co-occuring mental health conditions are so prevalent, it is imperative that the Autism community collaborates with health advocates, organization, and policymakers to offer more equitable mental health supports.

Mental Health: Autistic Adult Statistics

  • Autistic adults are more than twice as likely as neurotypical people to be diagnosed with an anxiety disorder.
  • Approximately 20% of Autistic adults have an anxiety disorder, compared with less than 9% of neurotypical adults. Nearly 3.5% of Autistic adults have obsessive-compulsive disorder and about 3% have social phobia, compared with about 0.5% of neurotypicals for each condition.
  • For individuals with communication challenges, including those that are nonverbal or don’t have the means to effectively communicate abstract thoughts and feelings, anxiety and other mental health conditions are likely underreported.
  • According to insurance-specific sources of information, about one-quarter of adults enrolled in Medicaid had anxiety, bipolar, ADHD, or depression identified in their medical records – a much larger percentage than adults without Autism.
  • Depression affects an estimated 26% of adults with Autism.
  • Mood disorders were also the most common diagnosis in Autistic adults ages 18 and up (17%), followed by schizophrenia (9%).
  • Autistic people have more than three-fold higher rates of suicide and suicide attempt than the general population.
  • The risk of suicide disproportionately affects Autistic women and girls.
  • 90% of Autistic people who attempted or died by suicide had a co-occurring psychiatric condition.
  • Lower-income Autistic adults, or those relying on Medicaid, may have fewer choices about where they can access Mental Health services.

Mental Health: Autistic Children Statistics

  • Nearly 78% of children with Autism have at least one mental health condition (including behavior or conduct problems, ADHD, anxiety, and depression) and nearly half have two or more.
  • Approximately 45% of pre-school-age children with Autism have mental health conditions. By contrast, about 14% of youth without Autism (ages 3-17) had mental health conditions.
  • Anxiety is 6.3x more prevalent among Autistic children than among children with intellectual disabilities, and 3x more prevalent than it was among children with other special healthcare needs.
  • 53% of older children with Autism (ages 12-17) received mental health treatment versus 38% of younger children with Autism (ages 3-11). Hispanic and Black children with Autism were less likely to receive mental health treatment than White children.
  • Child race has been linked with youth suicidality in Autism; Black or Hispanic Autistic children were at greater risk for suicide ideation or attempts than White/Caucasian children.
  • In Autistic youth, suicidal thoughts or actions are associated with co-occurring mood disorders, posttraumatic stress disorder, and anxiety.
  • Attention Deficient Hyperactivity Disorder (ADHD) affects an estimated 30 to 61 percent of children with Autism.

Bullying:

  • Children with disabilities are 2 -3x more likely to be bullied than their peers.
  • One study shows that 60% of students with disabilities report being bullied regularly compared with 25% of all students.
  • Young people who experience bullying are 1.4 to 10 times as likely to develop suicidal thoughts or behavior as their non-bullied peers are.
Education

Every child in the United States has a right to a public education, this includes children with Autism and other disabilities. The Individuals with Disabilities Education Act (IDEA), is the federal law that guarantees a free and appropriate public education in the least restrictive environment for every student with a disability. The law’s 2004 reauthorization (P.L. 108-446) further defined children’s rights to educational services and strengthened the role of parents/care providers in their children’s educational planning process. This means that the education for students enrolled in public school should come at no cost and should be appropriate for their age, ability, and developmental level.

The law specifies that educational placement should be on an individual basis, not solely on the diagnosis or category of disability.

Parents/care providers have a voice in the educational process. But keep in mind that IDEA requires that an appropriate educational program be provided, but not necessarily the one that is “ideal” for every child. It is important that parents/care providers work with the school to get the educational support and services the student needs.

Educational planning for students with Autism often addresses a wide range of skill development, including academics, communication and language, social skills, self-help skills, behavioral issues, self-advocacy, and leisure-related skills. It’s important to consult with professionals trained specifically in Autism to help a child benefit from their school program. Obtaining a range of opinions is also useful.

Statistics

Info & Resources

Many adults with Autism pursue higher education, earning degrees in their preferred field of study. Many colleges have resources dedicated to supporting students with disabilities such as the student disability service center which may be a component of the college program or additive programs such as the College Internship Program that support students attending colleges and universities. There are also programs available that offer social, academic, career, and life skills support for students who have an intellectual disability that may co-occur with Autism and are not pursuing an academic degree. Information about this type of programming support can be found here.

The experience of attending college or university is a big transition for every student. For students with Autism it may require careful planning to ensure adequate support is in place. Unlike in high school, college and university students must disclose their need for accommodations for instructors and engage in self-advocacy to ensure appropriate accommodations.

Accessing the campus disability support center and inquiring about options for support is an excellent first step. Some of the accommodations that are commonly provided at colleges and universities include: testing accommodations, audio recording of lectures, note-taking services, assistive technologies such as speech to text software, priority class registration, and even housing modifications.

Each college has a unique culture. Assessing the fit for the individual is important. Size, location, types of support, and academic programming should all be considered. Many adults with Autism report a great college experience, and with a little planning and preparation this can be true for you as well.

Resources:

  • Think College: Think College is a national organization dedicated to developing, expanding, and improving inclusive higher education options for people with intellectual disability.
  • College Internship Program: The College Internship Program (CIP) is a private young adult transition program for individuals 18-26 with Autism, ADHD, and other learning differences offering comprehensive and specialized services.
  • The Office of Special Education and Rehabilitation Services has an excellent information resource on transition services.

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