Autism Spectrum and Neurodevelopmental Disorders
There are organizations I have excluded from this list. My intention is to include organizations that are ethical and equitable in their research, research funding, and/or the research they donate to. If you have any questions or concerns about this decision, feel free to contact me via email.
Autistic Self Advocacy Network (ASAN)
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. They are working on empowerment for autistic people acround the world so they can take control of their own lives and the future of their common community, and seeks to organize the autistic community to ensure their voices are heard in the national conversation about them. Nothing About Us, Without Us!
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN is a national grassroots disability rights organization for the autistic community. They fight for disability rights. They work to make sure autistic people are included in policy-making, so that laws and policies meet the community’s needs. They work to support all forms of self-advocacy and to change the way people think about autism. Their members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.
ASAN works to make our society more inclusive for autistic people. They work to make sure that autistic people are in control in their own lives, and have a say in policies that affect them. They work to protect disability rights and civil rights. They celebrate and promote autistic community and culture. They engage in this work many ways, including:
- Policy and legal advocacy
- Making educational resources
- Creating advocacy tools
- Leadership training for autistic self-advocates
Retrieved from (About Us)
Organization for Autism Research (OAR)
OAR is an organization founded and led by parents and grandparents of autistic children, who serve as the Board of Directors providing leadership and shared life experience. The parent leaders are the heart, and the Scientific Council, a group of remarkable and equally dedicated autism professionals, are the brain when it comes to their mission and research direction. The autism professionals are not simply a list of names on letterhead; they are a “roll up your sleeves” team that are called on throughout the year to share their professional expertise and review the merits of all research grant applications.
OAR strives to use science to address the social, educational, and treatment concerns of autistic people, parents, autism professionals, and caregivers. The mission of “applying” research to answer questions of daily concern to autistic people and those around them define their goals and program objectives and shapes their budget.
In addition to funding research, their mission includes the requirements to disseminate new and useful information to as many members of the autism community as possible, and direct all research and programs initiatives toward enhancing the quality of life for autistic individuals and the families that give them love and support.
“Applied research,” is defined by OAR as research that directly impacts the day-to-day quality of life of autistic people. It entails the systematic investigation of variables associated with positive outcomes in such areas as education, communication, self-care, social skills, employment, behavior, and adult and community living. In this context, it extends to issues related to family support, the efficacy of service delivery systems, and demographic analyses of the autism community. Rather than fund research on what causes autism, OAR funds studies on topics of more everyday relevance such as education, parent and teacher training, communication, self-care, social skills, employment, behavior, and adult and community issues. Their ultimate focus is quality of life.
In simplest terms, applied autism research is “practical research that examines issues and challenges that autistic children and adults and their families face every day.”
Retrieved from (About OAR)
Asperger/Autism Network
The Asperger/Autism Network (AANE) serves children and adults and provides a mixture of in-person and virtual services to meet the needs of adults with autism, family members, neurodiverse couples, and professionals, no matter where they live. The AANE community is geared towards families and individuals with high-functioning autism (formerly known as Asperger’s syndrome), but no formal diagnosis is needed to attend conferences/programs, seek referrals, or access support. AANE is unique in that people with ASD are involved in every aspect of the organization—from being on the board and volunteering to serving on committees and being paid staff. Also, AANE parent coaches and support specialists are “dual-certified,” with both lived experience in autism and professional expertise.
MIND Institute at UC Davis
The UC Davis MIND Institute was founded by parents and is focused on research. The Institute conducts a wide range of research studies while also providing diagnostic and therapeutic services, education, and other programs. According to its website, the founders “envisioned experts from every discipline related to early brain development working together toward one goal: finding and developing treatments for individuals with neurodevelopmental disabilities.”
Over the years, it has consistently conducted high-level, peer-reviewed studies with impressive results. Because of its funding, expertise, and status, the MIND Institute has also been able to conduct very large autism studies—something that many smaller groups do not have the resources for. In addition to autism, the MIND Institute focuses on understanding Fragile X syndrome, Down syndrome, attention-deficit/hyperactivity disorder (ADHD), 22q11.2 deletion syndrome, and other neurodevelopmental disorders.
SPARK for Autism
SPARK is an autism research study and a growing community of autistic individuals, their families, and researchers on a mission to advance the understanding of autism. SPARK’s mission is to improve the lives of people with autism by identifying the causes of autism and informing more effective therapies, treatments, services, and supports. To understand the complexity of autism ─ what makes us the same and what makes us different ─ large numbers of people are needed to participate.
SPARK is open to all individuals living in the U.S. with a professional diagnosis of autism and their family members. SPARK includes over 100,000 people with autism and 175,000 of their family members. Autistic adults and their families are not only participants in the study, but are also serving on advisory boards, on staff, and as community partners.
In addition, SPARK is committed to diversity, equity, and inclusion in research and strives to listen to and include all voices in the autism community. The SPARK Snapshot – African American & Black Communities provides a window into the autism journey of African American and Black SPARK participants.
Over 100 genes have been linked to autism. We hope that by understanding the genetic basis of autism, we will better understand what makes autistic individuals special and how to best support them. SPARK is making important progress possible, and are committed to continuing to support autism research.