# data[].attributes.attachment_link.readable_text
Ingredients for slowing down to the relational speed of life and cooking up de-powered social operating models. Many Autists realise that the best we can ever hope for in this hypernormative civilisation is acceptance of our existence in bare survival mode, performing the function of a mindless busy cog and consumer in the sensory hell of the industrial machine.

# data[].attributes.attachment_link.description
Content about autism by autistic and neurodivergent people. A resource for autistic adults, parents of autistic children, educators, and physicians.

# data[].attributes.attachment_link.readable_text
We are often asked, "Will TBRI work with my child who has Autism?"

Trust-Based Relational Intervention® (TBRI ®) aims to help children from "hard places" of abuse, neglect, and/or trauma. While not every child with Autism Spectrum Disorder (ASD) has such a history, research shows that children with ASD are at least two times more likely to experience trauma. Therefore, children from hard places who also have ASD require trauma-informed interventions to meet their unique needs and to help them reach their highest potential.

One common intervention for children with ASD is Applied Behavioral Analysis (ABA) Therapy. Fortunately, many ABA Therapy strategies provide an excellent foundation for TBRI and seem compatible for children with both ASD and histories of trauma. In fact, noted Autism activist, Dr. Temple Grandin, recently had this to say about the TBRI Strategies presented in our book, The Connected Child:
"The Connected Child provides the parents of adopted at-risk children easy to follow practical advice on how to handle behavior problems in a calm, gentle, effective manner. Giving a child choices will help reduce many behavior problems." Dr. Temple Grandin
Our latest TBRI Practice Brief addresses ways that TBRI and ABA Therapy strategies can be used together. Before diving in, please keep in mind that every child is different, and you ultimately know your child best. It's also important to keep in mind that no child with ASD is the same, and the following information does not generalize to the entire population with ASD.

Click here to read the entire practice brief.

For other TBRI Practice Briefs and articles, please visit the Articles page of our website.

Special thanks to Linley Freeman, alumna of our Master of Developmental Trauma Program, who wrote this TBRI Practice Brief.

# data[].attributes.attachment_link.title
Karyn Purvis Institute of Child Development

# data[].attributes.attachment_link.description
We are often asked, "Will TBRI work with my child who has Autism?" Trust-Based Relational Intervention® (TBRI ®) aims to help children from "hard places" of abuse, neglect, and/or trauma. While not every child with Autism Spectrum Disorder (ASD) has such a history, research shows that children with ASD are at least two times more likely to experience trauma.

# data[].attributes.attachment_link.title
What Diversity & Inclusion is REALLY About | Simon Sinek

# data[].attributes.body
Communication Dissonance or Communication Difference?

# data[].attributes.attachment_link.title
What We Believe - Autistic Self Advocacy Network

# data[].attributes.attachment_link.description
Our Motto: What is "Nothing About Us Without Us"?"Nothing About Us Without Us" means that autistic people need to be involved whenever autism is discussed. When non-autistic people make decisions about autism without Autistic input, those decisions are usually bad. This makes it harder for us to get by in...

# data[].attributes.attachment_link.readable_text
This list includes a selection of private and non-profit organizations that provide research funding, support, and information for people with autism or other developmental disabilities and their families.
Link Disclaimer

American Academy of Pediatrics (AAP): Autism Initiatives The AAP Autism Initiatives includes policy statements and clinical reports, information on autism prevalence, tools and resources for pediatricians, and resources for families.

The Arc This agency promotes and protects the human rights of people with intellectual and developmental disabilities through policy and advocacy, initiatives on various aspects of life, and resources.

Asperger/Autism Network (AANE) AANE works with individuals, families, and professionals to help people with autism spectrum build meaningful, connected lives. They provide resources on a wide variety of topics as well as community, support, and advocacy.

AUCD Network Centers AUCD supports and promotes a national network of federally funded university-based interdisciplinary programs. These centers include theUniversity Centers for Excellence in Developmental Disabilities Education. Research, and Service (UCEDD), Leadership Education in Neurodevelopmental Disabilities (LEND) Programs, and Intellectual and Developmental Disabilities Research Centers (IDDRCs).

Autism Science Foundation ASF strives to support autism research by providing research funding and by providing information to the general public through their Weekly Science Podcast, Day of Learning, and more.

Autism Society Autism Society provides advocacy, education, referrals, support, and more at the national, state, and local level through their nationwide network of affiliates.

Autism Speaks Autism Speaks addresses the needs of people on the autism spectrum and their families through advocacy, support, resources, and research.

Autistic Self Advocacy Network (ASAN) ASAN seeks to advance the rights of people with autism. They are run by and for autistic people.

Autistic Women & Nonbinary Network (AWN) AWN provides community, support, and resources for autistic women, girls, nonbinary people, and all others of marginalized genders.

Brain & Behavior Research Foundation (BBRF) BBRF has awarded more than $11 million to autism research since 1987. This section features the latest research discoveries, news and events, and more.

The BRAIN Foundation The BRAIN Foundation supports translational research for neurodevelopmental disorders, including autism spectrum disorder. The organization also provides educational resources and support to families.

The Center for Advancing Policy on Employment for Youth (CAPE-Youth) CAPE-Youth was established to help states improve employment outcomes for youth and young adults with disabilities. They also provide information and resources for policymakers and the disability community.

Center for Autism and Related Disorders (CARD) CARD treats people on the autism spectrum using the principles of applied behavior analysis (ABA). They also provide information and other resources.

The Council on Children with Disabilities (COCWD) Autism Subcommittee The American Academy of Pediatrics' COCWD Autism Subcommittee provides evidence-based guidance on caring for children and teens on the autism spectrum.

Color of Autism The Color of Autism supports African American children with autism and their families. The organization works to provide culturally competent resources for early and accurate diagnosis and empower families to advocate for services.

Eagles Autism Foundation The Eagles Autism Foundation supports autism research that can improve the lives of individuals and families affected by autism. Their annual fundraising event is the Eagles Autism Challenge.

The Els for Autism Foundation The Els for Autism Foundation is committed to better understanding the aspirations of people with autism spectrum disorder and helping them to fulfill their potential to lead positive, productive and rewarding lives, through the development and delivery of interventions, educational programs, training programs, and recreational programs, and independent living programs; global outreach; and raising awareness and promoting inclusion of people on the autism spectrum.

Grupo Salto Grupo Salto is a support group for Latino families who have children with disabilities, especially autism. They work to provide culturally competent information and services to families.

Interdisciplinary Technical Assistance Center (ITAC) on Autism and Developmental Disabilities ITAC, which is part of the Association of University Centers on Disabilities (AUCD), provides guidance to interdisciplinary training programs that teach professionals how to screen and diagnose autism as well as provide evidence-based interventions.

International Disability Alliance The International Disability Alliance is made up of 14 global and regional organizations that represent people with disabilities. They advocate at United Nations for disability inclusion across the globe.

International Society for Autism Research (INSAR) INSAR is a scientific and professional organization that strives to advance knowledge about autism through providing opportunities for collaboration, mentorship, and education.

Madison House Autism Foundation Madison House works to find, develop, and promote solutions that allow adults on the autism spectrum to live independently, find employment, and connect to their community.

MITRE Neurodiverse Federal Workforce Initiative MITRE is collaborating with federal, academic, and private industry partners to launch a Neurodiverse Federal Workforce Initiative to increase high-tech career opportunities within the federal government for individuals on the autism spectrum.

Nancy Lurie Marks Family Foundation This foundation develops and provides grants to programs in research, clinical care, policy, advocacy, and education in order to advance the understanding of autism.

National Association of Councils on Developmental Disabilities NACDD is the national association for the 56 Councils on Developmental Disabilities (DD Councils) across the United States and its territories. The DD Councils receive federal funding to support programs that promote self-determination, integration and inclusion for all people in the United States with developmental disabilities.

National Autism Association (NAA) The NAA promotes safety and addresses urgent needs of the autism community through advocacy, education, awareness, research and tools.

Organization for Autism Research (OAR) OAR's mission is to use research to address the daily concerns of self-advocates, parents, autism professionals, and caregivers.

Simons Foundation Autism Research Initiative (SFARI) SFARI is a scientific initiative that works to improve the understanding, diagnosis, and treatment of autism spectrum disorders.

Southwest Autism Research and Resource Center (SARRC) SARRC is dedicated to autism research, education, evidence-based treatment, and community outreach and inclusion.

Simons Foundation/SPARK for Autism SPARK for Autism supports autism researchers and encourages people on the autism spectrum and their families to participate in autism studies. They also host a webinar series and write articles to educate stakeholders on issues related to autism, such as mental health, general wellness, brain development, and more.

United States International Council on Disabilities The United States International Council on Disabilities' mission is to advance international disability rights and inclusive development in the U.S. and abroad. They work to build bridges between governments, disability and human rights communities, and the private sector.

# data[].attributes.attachment_link.title
Private and Non-Profit Autism Organizations | IACC

# data[].attributes.attachment_link.description
The Interagency Autism Coordinating Committee (IACC) coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD).

# data[].attributes.headline
Encourage development of advocacy skills

# data[].attributes.subject
Encourage development of advocacy skills

# data[].attributes.attachment_link.title
A dual design thinking – universal design approach to catalyze neurodiversity advocacy through collaboration among high-schoolers

# data[].attributes.attachment_link.description
Neurodiversity describes the fact that humans all have different brains with unique qualities that contribute to society. Though understanding of neurodiversity is gaining traction among the general public, there remains considerable stigma and prejudice…

# data[].attributes.attachment_link.description
Connect with the Autism Asperger’s Network (AANE) for comprehensive resources, support, and community for individuals, families, and professionals affected by autism spectrum conditions. Learn more about AANE’s mission and services.

# data[].attributes.attachment_link.readable_text
Abstract

The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.

Keywords: autism, children, neurodiversity, self-advocacy, early intervention

Introduction

The last two decades have brought about huge socio-political shifts within the world of autism theory, research and practice. In the mid-1990s, the emergence of the internet provided a more accessible text-based means of communication and empowered a growing number of autistic people to connect and share ideas with one another (Dekker, 2020)1. Out of the early autistic social groups of the 1990s emerged autistic culture, the autistic self-advocacy movement, and the assertion that autism is a valid way of being. This environment also gave rise to the neurodiversity movement (Singer, 1998). Through the 2000s, the neurodiversity movement has been galvanized in a large part due to the voices, advocacy and protest of the autistic community, facilitated through developments in online communication and networks (Kras, 2009) and is increasingly influencing academic, clinical and lay understanding of autism and other forms of neurological difference.

A central premise of the neurodiversity movement is that variations in neurological development and functioning across humans are a natural and valuable part of human variation and therefore not necessarily pathological (e.g., Jaarsma and Welin, 2012; Kapp, 2020). Neurodiversity as a social justice and civil rights movement intersects with the wider disability rights movement (Hughes, 2016). The most significant premise of both is that disability is not simply a defect in the individual, but arises from the interaction between a non-standard individual and an unaccommodating environment (the social model of disability; Oliver, 1990). Consistent with this stance, many neurodiversity proponents do view autism as a disability. From this theoretical underpinning, the neurodiversity movement makes several demands, including the recognition and acceptance of the value of cognitive variation as a form of biodiversity and hence its positive contribution to groups, communities and societies (the social-ecological perspective; Chapman, 2020) and equal rights leading to an end to discriminatory policies and practices (Runswick-Cole, 2014).

The amplification of autistic viewpoints, coupled with the traction of neurodiversity as a concept and movement, has led to the emergence of new ethical, theoretical and ideological debates. These debates and discussions have had genuine impact within some areas of autism research, predominantly that focused on adults. Examples of this impact include: (a) debates over whether the social difficulties experienced by autistic people are best understood as being a problem within the individual, or a problem between two (mis-matched) individuals, and the resulting research into the Double Empathy Problem and diversity in social intelligence (Milton, 2012; Crompton et al., 2020); (b) calls from the autistic community for a greater emphasis on improving mental health and quality of life in autistic individuals (Autistica, 2015; National Autistic Taskforce, 2019) and an increase in research into effective, person-centered mental health interventions (e.g., Crane et al., 2019; Cassidy et al., 2020; Parr et al., 2020) and (c) research into community preferences over the language used to describe autism and autistic people (e.g., Kenny et al., 2016; Bury et al., 2020). Despite these impacts within adult-focussed research, these debates are still rarely directly addressed in early intervention research, where the impact of the autistic viewpoint is often implicit or not present at all. The absence of clear and proactive engagement with these debates contributes to a lack of confidence in an evidence base that has already shaky foundations due to its poor methodological quality and widespread unreported conflicts of interest (e.g., French and Kennedy, 2018; Bottema-Beutel et al., 2020; Sandbank et al., 2020). In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with these debates. We focus on psychosocial intervention programmes that aim to improve aspects of young autistic children's cognitive, behavioral, emotional, or relational functioning and reflect on the purpose of early autism intervention, the types of intervention methods we use, and how these align with the priorities of autistic people. We then reflect upon issues pertinent to research into early autism intervention and the challenges and opportunities presented by these shifts, pointing to future directions.

Implications for Early Autism Intervention

Whilst there is agreement amongst most of the autistic community, clinicians, and researchers that interventions should be available to help autistic people of all ages to thrive and reach their potential (UK Parliament, 2020), there are many controversies surrounding what this means in practice. Until the 1990s, it was common to consider therapy for autistic children as a means of reaching the child within their "autistic shell" and drawing them out, resulting in a normal or near-normal child (e.g., Park, 1972; Kaufman, 1976; Maurice, 1998). The earliest actions of the autistic self-advocacy movement were to call for the recognition of autism as an essential aspect of the person (Sinclair, 1993). Autistic self-advocates opposed early autism interventions with a stated treatment goal to make a child no longer, or less, autistic. However, some stakeholders, in particular parents of autistic children with substantial intellectual, language and behavioral challenges, argued that autistic adults without these challenges could not speak to their children's experience, and that their children required such interventions in order to achieve a reasonable quality of life (Dekker, 2017; Fletcher-Watson, 2018). This disagreement has yet to be fully resolved. Some activists continue to argue that any attempt to alter an autistic person is misguided, thereby rejecting any form of early intervention (e.g., Stevenson, 2015). Some autistic people, parents or other stakeholders continue to oppose neurodiversity as a concept or social movement, arguing, for example, that it presents a sanitized view of autism, excludes those with significant language or intellectual disability, and deflects resources from those most in need of support (Happé and Frith, 2020; Hughes, 2020).

Objections to neurodiversity are often based on an erroneous conception of the tenets of the movement (den Houting, 2019). Fundamentally, neurodiversity emphasizes the collective strength inherent in cognitive diversity (Chapman, 2020) and that this strength arises from all kinds of differences, including those associated with autism, intellectual disability or language impairment (Kapp, 2020). Moreover, neurodiversity activism, which includes some non-speaking activists, specifically includes and advocates for those who are unable to do so themselves. A balanced view of neurodiversity recognizes that, whilst diversity brings fundamental collective advantages, within any one neurodivergent individual weaknesses are often the inextricable partner of strengths, and that individuals can want things to be different and still want to be themselves. It includes the understanding that some neurological differences are disadvantageous, either inherently or in interaction with the environment, and could benefit from correspondingly targeted intervention.

Adopting this balanced account of neurodiversity, we can derive three important implications for intervention. Firstly, neurodiversity-informed intervention opposes any attempt to "cure" or "normalize" autistic children, and, whilst in many contexts this talk is no longer acceptable (Happé and Frith, 2020), there are still many interventions purporting an explicit or implicit curative or normative agenda (Mottron, 2017). This opposition is conceptual: even if it were desirable, it would not be possible to cure someone of an innate neurological difference. It is also existential: autism is so pervasive and profound, that attempts to target autism itself fundamentally changes the person; many autistic people have equated being cured of autism as tantamount to death, as they would be a completely new individual (Sinclair, 1993). There is also increasing evidence to support opposition on ethical grounds as: (a) this approach leads to individuals "masking" their autism or attempting to "pass" as neurotypical at a huge cost to their mental health and well-being (Milton and Moon, 2012; Mandy, 2019) and (b) many intervention programs attempt to teach "normative behavior" without referencing empirical evidence for what "normative behavior" looks like and thereby teach autistic children to behave in ways that do not actually resemble autistic or non-autistic children (Bottema-Beutel et al., 2018).

Secondly, interventions informed by neurodiversity do carefully address any extrinsic factors around an autistic child that contribute to disadvantage and negative experiences and therefore aim to improve the "goodness of fit" between the child and their physical or socio-emotional environment (Lai and Szatmari, 2019). Interventions that encourage and provide opportunities for physical, sensory and emotional regulation (e.g., sensory integration therapy, Randell et al., 2019) are compatible with this stance. Interventions can promote an understanding of autism and neurodiversity in people in the child's world, such as caregivers (e.g., EMPOWER-ASD intervention,2 Systemic Autism-related Family Enabling intervention, McKenzie et al., 2019; SOLACE programme, Lodder et al., 2020), and education professionals and peers (e.g., Learning about Neurodiversity at School project3). These interventions also support non-autistic people to build resilience, develop a positive philosophy toward the autistic child, and to build relationships in a respectful, supportive and harmonious manner. Targeted interventions for autistic children can also build effective communication between the child and others, for example, by coaching caregivers and education professionals to "speak the child's language" (e.g., Paediatric Autism Communication Therapy; Pickles et al., 2016; Green et al., 2018). Other interventions aim to support neurodivergent children by working with them directly to understand their autism and build self-awareness and self-esteem (e.g., Pegasus, Gordon et al., 2015; the Spectacular Girls programme4). Intervention efforts that target the child's environment may address early external causes of distress (e.g., non-acceptance/non-accommodation of needs, bullying, and exclusion) and therefore help to prevent future mental health problems.

A third implication for interventions concerns those aspects of autism that are disadvantageous in and of themselves. A balanced view of neurodiversity mandates that specific characteristics of autism be depathologised, unless those characteristics cause harm or discomfort to the individual or a violation of others' rights. The complexity for autism interventions concerns the fine line between supporting a child's development and attempting to change the essence of the person. It also concerns the fine balance between accommodation of autistic behaviors and the alleviation of actually or potentially detrimental cognitive or behavioral phenomena. This balance is challenged by differing opinions as to what constitutes and causes suffering, and difficulties in ascertaining the views of individual children due to their young age, communication difficulties, and lack of understanding of potential future consequences. There are no simple solutions to these complexities. However, there are some principles that can guide us in a direction that is consistent with autistic viewpoints and a neurodiversity stance.

Consideration of Internal Drives and Experiences

A key principle concerns looking beyond observable behavior to consider internal drives and experiences. An under-appreciation of the sensory and emotional experiences of neurodivergent children can result in attempts to reduce or eliminate natural coping and self-regulation strategies, such as repetitive motor mannerisms or "stimming" behaviors (Bascom, 2012; Kapp et al., 2019). Eliminating such behaviors can lead to children being unable to avoid aversive experiences, calm themselves, or to communicate intense emotions (Kapp et al., 2019). Moreover, there is increasing evidence that different developmental routes can lead to the same outcome, whereby atypical developmental processes are actually beneficial to that individual's intrinsic developmental trajectory; examples are echolalia and hyperlexia as alternative routes into functional spoken language (Mottron, 2017). Focussing on reduction of the behaviors that define the autism diagnosis fails to consider that these behaviors are the outcome of different underlying neurology and interfering with them may undermine a child's natural coping strategies and development. Early interventions should therefore work with (not against) the child's developmental trajectory, as well as with their natural way of learning (Fletcher-Watson, 2018).

Re-evaluation of Intervention Targets

We should evaluate the motivations driving the decisions around intervention targets and not assume that the things that make a good neurotypical life are identical to autistic priorities (Buckle, 2013; Milton, 2014; Iemmi et al., 2017). Active listening to the autistic community helps understand autistic priorities around intervention targets, as does close attention to research that highlights the phenomena that cause autistic people difficulty or distress, affect quality of life and for which autistic people actively ask for support. Examples include autistic inertia (Buckle et al., 2020), life skills (Pellicano et al., 2014), intolerance of uncertainty (Rodgers et al., 2018), and anxiety (Robertson et al., 2018). Certainly, avoiding intervention techniques that themselves cause emotional harm is crucial, and a key underlying principle is to support the autistic child's ability to exert choice and control in their life as they develop.

Emphasis on Strengths, Pleasure, and Well-Being

Interventions should respect and enhance those things that bring happiness and joy. Passionate interests can bring pleasure and relaxation through repetition or intensity of immersion in tasks, behaviors or objects (e.g., autistic reflections on flow states; Murray et al., 2005; McDonnell and Milton, 2014). Predictable access to preferred activities not only decreases expressions of negative emotions (sometimes manifest as "challenging behavior") but also can provide opportunities for expertise and genuine social bonding (Mottron, 2017; Grove et al., 2018; Wood, 2019). The adoption of a positive psychology and strengths-based stance (Burnham Riosa et al., 2017; Dykshoorn and Cormier, 2019) refocuses intervention efforts away from reducing deficits and toward enhancing those activities or skills that naturally lead to learning, social connection, and well-being. Intervention efforts should leave alone unconventional characteristics that cause no harm to self or other, such as a monotone voice or preference for solitude. Lifespan research into the childhood factors that are associated with long-term well-being will enable us to boost these important factors through early intervention (Rodogno et al., 2016; Pickles et al., 2020).

Promotion of Autonomy

The final fundamental principle concerns autonomy and the right to say "no". Poignant accounts from autistic adults describe the use within early interventions of overbearing physical prompting, ignoring of communication attempts, or outright removal of their right to communicate "no" and how this left them passive, traumatized, and vulnerable to abuse (Kirkham, 2017; McGill and Robinson, 2020). These practices must be avoided. Autonomy is essential to creating the life one wants to lead (National Autistic Taskforce, 2019; Späth and Jongsma, 2020). In order to achieve any significant level of autonomy, one must have functional communication, so interventions supporting communication (not simply speech) and understanding required for the expression of autonomy are justified, as long as they are undertaken ethically, with true respect for the individual.

Application of the Neurodiversity Framework to Autism Intervention Research

Re-Framing Effectiveness

Early intervention researchers understand the importance of an evidence base and effectiveness is often the key factor when evaluating evidence. Clearly, it is critical that research informs us about intervention effectiveness - no one wants to spend limited resources on interventions that do not work. However, effectiveness needs to be understood within the context of the above principles. While an intervention may be effective at reducing autistic behavior, if it leaves the child without coping mechanisms or at risk of mental health difficulties, it has not been effective in improving their life. We need to reframe effectiveness to concentrate on the outcomes that are most important to the long-term well-being and autonomy of the children involved and the preferences and priorities of autistic people (Neumeier and Brown, 2020); research can then evaluate the extent to which these prioritized outcomes are (or are not) improved by any particular intervention.

Outcome Measurement

The landscape of tools used to measure intervention outcomes is strongly focused on the reduction of autism symptoms (e.g., Provenzani et al., 2020). Conceptually, this falls squarely within a normalization agenda: if children's autistic behaviors are reduced sufficiently, they will no longer meet the criteria for autism. In practice, autism symptomatology as a metric amalgamates many different variables. Many of these target variables are incompatible with a balanced view of neurodiversity, such as imposing non-autistic social behaviors or reducing sensory behaviors or motor mannerisms that act as coping strategies. However, others are consistent with it, e.g., improving communication (Kapp, 2020). As a discipline, we need to move measurement away from autism symptomatology and produce validated tools that assess the goodness of fit between an individual and their social, emotional and physical environment. There are good examples already, such as the Autism Five Minute Speech Sample that measures the emotional climate around the autistic child (Benson et al., 2011), and the Dyadic Communication Measure for Autism that assesses caregiver communicative synchrony (Aldred et al., 2004; Green et al., 2010). However, additional measures of environmental outcomes are needed. We also need robust and creative ways to measure, in children with all levels of communication ability, specific and transparent intervention outcomes that are verifiably beneficial, including autonomy, quality of life and the variables that easily impact on these, such as functional communication, inertia, and anxiety (McConachie et al., 2015). The International Classification of Functioning, Disability and Health's "Core Set for Autism Spectrum Disorder" (Bölte et al., 2014) assesses such outcomes within clinical contexts and could be developed for use within intervention research.

Partnerships With Autistic People

In the UK there is now an increased understanding amongst researchers and funding bodies of community priorities (e.g., James Lind Alliance, 2016) and more meaningful involvement of autistic people in research (Pellicano et al., 2014; Fletcher-Watson et al., 2019). More neurodivergent/autistic people are leading academic discourse (e.g., Chapman, 2020; Kapp, 2020) and empirical studies (e.g., Belcher et al., 2019; Buckle et al., 2020) and there is a greater emphasis on participatory and action research models with autistic viewpoints and experiences at the center (e.g., Crane et al., 2019; Lam et al., 2020). These developments have cast light on the need for autism researchers to re-align their priorities and rethink some of the ways in which they work, thereby slowly changing the emphasis and tone of research.

Parents have historically been the default channel for meaningful involvement within research, and trials of early interventions still typically center on parental views and priorities (e.g., Leadbitter et al., 2018). Although they have their child's best interests at heart, neurotypical parents may be missing essential aspects of understanding from their autistic child's perspective. One argument put forward against involving autistic adults in child-focused research is that articulate and intelligent autistic adults cannot speak for the experience of children with significant intellectual or language disability. We need to be much more invested and creative in exploring ways to garner and document the views of children and adults who have severe communication impairments and this is an important focus for future research (Happé and Frith, 2020). We also need to recognize that autistic adults often bring valuable expertise to child-focused research. Autistic people can speak to what a good autistic life is like (Iemmi et al., 2017) and what might have helped them. Many autistic self-advocates are parents of non-speaking children or were such children themselves. Some autistic people are well-connected with others and can draw on a wide range of experiences. Researchers can also become better acquainted generally with autistic viewpoints through the sentiments actively, and often passionately, shared by autistic people in general forums. It is easier than ever before for neurotypical researchers to access and understand autistic culture and preferences through books, blogs, video accounts, and social media posts.

Conclusions and Future Directions

Autistic self-advocacy and the neurodiversity movement offer up valuable opportunities to autism intervention practitioners and researchers. A balanced neurodiversity stance offers key principles to steer the development, delivery and evaluation of early interventions. Future directions for research and practice include: (1) partnerships with autistic people, alongside caregivers and other stakeholders, on intervention research steering and advisory boards and throughout engagement, involvement and co-production processes; (2) reflection by intervention researchers and practitioners upon how their intervention practices align with a neurodiversity framework and the views of autistic people, particularly around intervention targets and methods, and more transparent articulation of these issues in engagement and dissemination activities; (3) greater regard within intervention programmes to natural autistic developmental processes, coping strategies, autonomy and well-being; and (4) increased efforts to develop and validate tools to measure autistic prioritized outcomes and the goodness-of-fit between an autistic individual and their environment. With close attention to the needs, preferences and priorities of autistic people, we can move beyond historical divides, misunderstandings and wrongdoings to a place where we value the expertise of autistic people, embrace practices that respect and accept individual neurotypes, and ensure our interventions address the things that matter most to the recipients.

Data Availability Statement

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.

Author Contributions

All authors contributed to the development of ideas and viewpoint, the review of the literature, and writing the article.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

References

Bascom J. (2012). Quiet hands, in Loud Hands: Autistic people, Speaking, ed J. Bascom (The Autistic Press), 177-182. Available online at: https://juststimming.wordpress.com/2011/10/05/quiet-hands/ (accessed March 8, 2021).

Buckle K. L. (2013). Is reducing disability always good? [Unpublished Master's Thesis]. University of Manchester, UK. [Google Scholar]

Buckle K. L., Leadbitter K., Poliakoff E., Gowen E. (2020). No way out except from external intervention: first-hand accounts of autistic inertia. [[PsyArXiv. 10.31234/osf.io/ahk6x PMC free article] [PubMed] [CrossRef] Google Scholar]

Bury S. M., Jellett R., Spoor J. R., Hedley D. (2020). It Defines Who I Am or It's Something I Have: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?. [J. Autism Develop. Disord. 10.1007/s10803-020-04425-3. [Epub ahead of print]. [PubMed] [CrossRef] Google Scholar]

Chapman R. (2020). Neurodiversity and the social ecology of mental functioning. Perspect. Psychol. Sci. 10.1177/1745691620959833. [Epub ahead of print]. [[PubMed] [CrossRef] Google Scholar]

Dekker M. (2020). From exclusion to acceptance: independent living on the Autistic Spectrum, in Autistic [Community and the Neurodiversity Google Scholar] Movement: Stories From the Frontline, ed S. Kapp (Singapore: Springer Nature: ), 41-49. 10.1007/978-981-13-8437-0_3 [CrossRef]

Iemmi V., Knapp M., Ragan I. (2017). The [Autism Google Scholar] Dividend: Reaping the Rewards of Better Investment. Vancouver: Michael Smith Foundation for Health Research.

Kapp S. (2020). Introduction, in Autistic Community and the Neurodiversity Movement: Stories from the Frontline, ed S. Kapp (Singapore: Springer Nature: ), 1-19. 10.1007/978-981-13-8437-0 [[CrossRef] Google Scholar]

Kaufman B. N. (1976). Son-rise. New York, NY: HarperCollins. [Google Scholar]

Maurice C. (1998). Let me [Hear Google Scholar] Your Voice: A Family's Triumph Over Autism. London: Robert Hale.

McConachie H., Parr J. R., Glod M., Hanratty J., Livingstone N., Oono I. P., et al.. (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder. NIHR Health Technol. Assess. Programme. 19. 10.3310/hta19410 [[PubMed] [PMC free article] [CrossRef] Google Scholar]

McDonnell A., Milton D. (2014). Going with the flow: reconsidering 'repetitive behaviour' through the concept of 'flow states', in Good Autism Practice: Autism, Happiness and Wellbeing, eds G. Jones and E. Hurley (Birmingham: BILD: ). [Google Scholar]

McGill O., Robinson A. (2020). Recalling hidden harms: autistic experiences of childhood applied behavioural analysis (ABA). [Adv. Autism. 10.1108/AIA-04-2020-0025. [Epub ahead of print]. [CrossRef] Google Scholar]

Milton D., Moon L. (2012). The normalisation agenda and the psycho- emotional disablement of autistic people. Autonomy Crit. J. Interdisc. Autism Stud. Available online at: http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9 (accessed March 15, 2021).

Neumeier S. M., Brown L. X. Z. (2020). Torture in the name of treatment: the mission to stop the shocks in the age of deinstitutionalisation, in Autistic Community and the Neurodiversity Movement: Stories From the Frontline, ed S. Kapp (Singapore: Springer Nature: ), 195-210. 10.1007/978-981-13-8437-0_14 [[CrossRef] Google Scholar]

Oliver M. (1990). The Politics of Disablement. London: Palgrave. 10.1007/978-1-349-20895-1 [[CrossRef] Google Scholar]

Park C. C. (1972). The Siege: The First Eight Years of an Autistic Child. Boston, MA: Little, Brown and Company.

Singer J. (1998). Odd people in: The birth of community amongst people on the Autistic Spectrum: A personal exploration of a new social movement based on neurological diversity. Doctoral thesis, Sydney: Faculty of Humanities and Social Science University of Technology, Sydney. [Google Scholar]

Articles from Frontiers in Psychology are provided here courtesy of Frontiers Media SA

# data[].attributes.attachment_link.title
Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice

# data[].attributes.attachment_link.description
The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research ...

# data[].attributes.attachment_link.readable_text
Self-Advocacy

The Aspie Teen's Survival Guide: Candid Advice for Teens, Tweens, and Parents, from a Young Man with Asperger's Syndrome

By Jeff D. Kraus

Summary: The Aspie Teen's Survival Guide, written by self-advocate and self-described "Aspie" Jeff D. Kraus, provides easy-to-digest information for tweens and teenagers on Asperger's Syndrome, as well as for the adults in their lives, and shares advice on how to handle a variety of situations that can be challenging for autistic individuals, for example how to handle transitions, sensory sensitivities, and social awkwardness; and how to deal with stress, get around independently, handle bullying, and channel strong interests, among other topics. The personal anecdotes and informal tone, as well as practical information on handling challenges successfully, from someone who has "been there, done that" not long before he wrote this book, can be reassuring , especially for kids dealing with daily challenges and becoming their own self-advocates.

Why we recommend this resource: This book was written for a tween- and teenage audience but has sections in each chapter for parents and professionals who work with autistic kids and teens, so they can get a first-person perspective from a young adult on what it's like to have autism. Jeff Kraus provides especially helpful insights into how to advocate for your child's education and keep communication open with your child about their experience in school; how to support your child's social growth without pushing, and how to best support your child's desire for independence and allow them to follow their own path.

Read our detailed review here

Autism . . . What does it Mean to Me?

By Cathy Faherty

Summary: Parents of autistic children sometimes struggle with the questions of When and How to tell their child they have autism. Some kids develop an awareness on their own that they are somehow different than their peers. Autism . . . What does it Mean to Me? is a user-friendly resource guide that parents can use to guide their children through the process of developing awareness of their strengths and challenges and self-acceptance. This process can help kids advocate for themselves at home, in school, and in the community. The book uses "communication forms" to explain information in a kid-friendly way, using concrete, positive, and supportive language. Each form has a place for children to communicate their own thoughts, feelings, and preference about the information they are learning. Teaching strategies are offered on topics such as the sensory system, ways of thinking, what an IEP is, understanding non-verbal communication, and what a friend is, among other important topics. The many communication forms provided cover younger and older kids.

Why we recommend this resource: This workbook allows your child to speak for themselves about many things essential to their everyday functioning and offers a structured, supportive, and self-paced journey towards self-acceptance and self-determination. The author writes with respect and empathy for autistic individuals.

Read our detailed review here

Fostering Self-Determination among Children and Youth with Disabilities-Ideas from Parents for Parents

By Katie Weir, Molly Cooney, Martha Walter, Colleen Moss, and Eric Carter

www2.waisman.wisc.edu/naturalsupports/pdfs/FosteringSelfDetermination.pdf

Summary: "Fostering Self-Determination among Children and Youth with Disabilities" is a free online resource that provides concrete strategies parents can use to help their children become increasingly independent. The authors of this guide, all parents of children with disabilities, offer abundant ideas for developing the skills required to become self-determining in 17 categories, such as making choices, problem solving, self-awareness, participation, communication, and self-advocacy.

Why we recommend this resource: Parents are often thirsting for advice on encouraging internal motivation in their children. Parents of autistic children may have the added challenge of motivating children to want more independence. The value of this guide is in having a road map to self-determination and independence that covers many areas of challenge encountered in daily life. Strategies for developing and practicing these skills are offered.

Read our detailed review here

NeuroTribes

By Steve Silberman

Summary: NeuroTribes, by author and journalist Steve Silberman, is a fascinating journey through the history of autism, its impact on society, and its future. The book discussed how earlier conceptions of diagnostic categories has confused our ability to measure the prevalence and autism and slowed progress in our understanding of ASD. The author suggests that autism is not a new or rare phenomenon, and that as a society we should-indeed we must, given the prevalence of ASD-advance towards accepting differences in brain wiring because neurodiversity contributes greatly to human development. Silberman discussed several historical figures who made great contributions to progress who may have had autistic traits. The author calls for increased awareness of the need for accommodations in the workplace to maximize inclusion and productivity in a neurodiverse society.

Why we recommend this resource: NeuroTribes is a informative, entertaining, and enlightening, if long, book that provides important insights regarding neurological diversity and what may be possible for our society if we become more open to accommodating for such differences. A shortcoming of NeuroTribes is that it does not spend much time addressing the experiences of people who are more severely impacted by autism.

Read our detailed review here

Uniquely Human

By Barry M. Prizant

Summary: The central theme of Uniquely Human is that we don't need to try to "fix" people with autism, but rather modify our behavior and expectations to best support them. The author, Barry Prizant, promotes learning from individuals with autism to understand their unique ways of experiencing and responding to the world, and he recommends focusing on autistic children's strengths to help realize their potential. The book includes eye-opening first-person accounts by individuals with autism.

Why we recommend this resource: This book is a quick read and offers a refreshing and optimistic perspective. It suggests that when we stop trying to eliminate "autistic behaviors" in our children and focus instead on understanding, supporting, and celebrating their uniqueness, it opens possibilities for their success and happiness in the world.

Read our detailed review here

I'm Determined!

The I'm Determined project, a state-directed project funded by the Virginia Department of Education, focuses on providing direct instruction, models, and opportunities to practice skills associated with self-determined behavior. This project facilitates youth, especially those with disabilities to undertake a measure of control in their lives, helping to set and steer the course rather than remaining the silent passenger. Visit the website here.

# data[].attributes.attachment_link.description
The Aspie Teen's Survival Guide: Candid Advice for Teens, Tweens, and Parents, from a Young Man with Asperger's Syndrome By Jeff D. Kraus Summary: The Aspie Teen's Survival Guide, written by self-advocate and self-described "Aspie" Jeff D.

# data[].attributes.attachment_link.readable_text
Maybe you've received a message from your child's teacher about his behavior at school, or you want to set your child up for a good experience as she begins a new activity. Communicating with teachers, coaches, and other adults about how to support your sensitive or neurodiverse child may feel difficult to navigate, but thankfully other parents have also walked that journey and have some practical wisdom to share.

In today's podcast, Marni Love (former public school teacher, home educator, and Connected Families Certified Parent Coach) and Taylor Irby (Connected Families Certified Parent Coach) join Stacy Bellward (podcast host) to share their experiences about advocating for a sensitive child. Taylor and Marni offer practical ideas to empower you so your child can receive the support they need in any environment.

In this podcast, you'll discover:

We hope that you have been encouraged by today's podcast, and we look forward to getting to know you. Please check out our website, and don't forget to reach out if you need help. It is a joy to be able to walk with you as you parent your kids in God's grace and truth!

Mentioned in this podcast:

Marni Love is a former public school teacher and has been a home educator for the past 13 years. She is a Homeschool Mentor and Certified Connected Families Parent Coach. Marni enjoys spending time with her husband, Eric, and their three sons in the beautiful mountains and beaches of Northern California. You can connect with her through her website: marnilove.com

Taylor Irby is a mother to 5 kids, and she understands the struggles parents face. Every day she faces ADHD, autism, anxiety, developmental delays, and adoption trauma. She, too, has sat in the midst of challenges and searched the world for answers. Taylor read book after book and got excited over methods that were short-lived. That is when she hit the wall of desperation and sought parent coaching through Connected Families. Taylor ultimately became a coach through their training program to help others like her. She has seen transformation in her home through working with a framework that not only has changed her children's behavior but their hearts as well. You are not alone on this parenting journey. There is hope, and you can enjoy your children, build that relationship you have wanted and see behavior change. You can learn more about Taylor at taylorirbycoaching.com, and on Facebook https://www.facebook.com/taylor.irby.5 and Instagram @taylorirbycoaching

# data[].attributes.attachment_link.title
How Do I Advocate for My Neurodiverse Child?

# data[].attributes.attachment_link.description
Wondering how to help your sensitive or neurodiverse child? You want to talk to the teacher at school or preschool but don't know where to start.

# data[].attributes.attachment_link.title
Common Differences Between Autistic & Neurotypical Communication

# data[].attributes.attachment_link.readable_text
"Autism isn't this strange alien thing, it's just a different way of thinking and experiencing the world. Some of us will find ourselves more or less compatible with modern living than others, we will all have different needs...but autism is not terrifying or awful, nor is it marvellous and fabulous, it just is" (Rhi).

While autism has existed as a diagnosis since 1933, the only thing new about it is its definition as a neurodiversity. Originally regarded as an intellectual impairment, and stigmatized by society, attitudes toward Autism Spectrum Disorder are changing. The disability empowerment movement, among other human/civil rights campaigns, led the way to looking at autism through the eyes of autistic people, but full inclusion is only on the horizon. This article approaches the topic of autism advocacy from the standpoint of the continued exclusion of Autistic people in this era of diversity.

Early Recognition in America

" Autism may have been recognized in the USA as early as 1846 by a phrenologist conducting a census on people who were then known as 'idiots.' One such man, 59-year-old 'Billy,' was considered intellectually incapacitated, although in many respects he demonstrated superior cognition. His verbal abilities were severely limited, but his musical pitch was perfect, and he knew more than 200 tunes. And there were others whose combination of skills, strengths, and deficits puzzled the examiners...If Billy were alive today, his disability, and that of others documented in 1846, would likely be diagnosed as autism" (Donvan and Zucker).

Autism Is Not a Disability

Autism is typically defined as a developmental disorder of variable severity, including difficulties with social interaction and communication, and restricted or repetitive patterns of thought and behavior. This description characterizes autism as an aberration instead of a range of differences in brain function and behavioral traits.

Diversity is defined as being composed of differing elements or qualities (Diversity), while a disorder is an abnormal state involving dysfunction, distress, and deviance. Current thinking favors viewing autism as a psychological diversity, innate to human beings.

Human Rights

The Americans with Disabilities Act, 1990, prohibits discrimination against people with disabilities in public accommodations, employment, transportation, government services, and telecommunications. The intent of such legislation was, and is, to ensure that an individual's abilities, and not their impairments, are the focus of decisions affecting their lives (Guide to Disability Rights Laws | ADA.Gov).

In Canada, the laws protecting people with disabilities include The Canadian Charter of Rights and Freedoms and The Canadian Human Rights. In 2010, Canada ratified the UN Convention on the Rights of Persons with Disabilities. Yet decades later, while the law dictates the availability of accessible services, advocates are still fighting for adequate funding of home and community-based services for children and adults.

Barriers to Inclusion

In 2016, the Province of Ontario eliminated government-funded access to behavior therapy for autistic children aged five and over. A public outcry forced the government to reverse its decision, announcing $200 million in funding over the subsequent four years.

In 2019, Member of Provincial Parliament Amy Fee submitted an article to the Toronto Star criticizing the state of autism services: "Parents [are] overcome with emotion just talking about their daily struggles to find help... Most of the families I spoke with...don't understand why a small number of children get service, while the majority are on wait-lists... There's a wait-list to receive a diagnosis, a wait-list to access provincial funding and another for private providers. All this waiting is adding to their stress and keeping children from accessing much needed therapy."

There are still over 54,000 children registered in and waiting for core services through Access OAP (Ontario Autism Program).

What Do Inclusion and Empowerment Mean for Autistic People?

Inclusion is the practice of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized. Inclusive organizations reach out to people with disabilities, seeking to understand their differences, and fostering a sense of belonging.

Benefits of Inclusion

Inclusion leads to empowerment, which provides:

Greater opportunities for friendships

Increased social networks

Greater respect for others

Shared learning opportunities

Reduced isolation

Higher academic achievement

Access to a wider range of school/employment resources

Increased collaboration and participation (CLT Development Team)

While accommodating the needs of autistic people can be legally decreed, as long as autism misconceptions remain, many of us will face significant hardships. According to a UK study led by Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge, almost half of autistic people lack sufficient money to meet basic needs, whereas one quarter of neurotypicals struggle with poverty (Salman).

My own experience with finding reliable employment is that I'm either overqualified or underqualified for jobs I apply for. Differences in the way I think, and process information diminish employers' judgments of my suitability for jobs.

Along with Autism and ADHD, I have mental health issues stemming from lack of early diagnosis, being forced to live in a world that is not designed for me - or for other neurodivergent people. Having to mask or camouflage as "normal" to pass as neurotypical is physically and emotionally draining.

Words of Empowerment: Sticks, Stones, and Slurs

It is too easy to speak without thinking, to not genuinely listen and connect with people. When words are used in the wrong way, or uttered with the wrong tone, they can cause great psychological pain. Words hurtful to autistics include risk, disease, disorder, impairment, deficit, pedantic, and obsession.

Person-First Language

A significant component of accessibility for people with disabilities is Identity. Historically, people have been referred to as their impairment, which destroys human dignity. For example, we've referred to a schizophrenic, blind man, deaf-mute, as opposed to putting the person first, i.e., person with schizophrenia, or a person with visual (or auditory/hearing) impairment. We still pity the mobility impaired as confined to a wheelchair rather than empowered to be more independent (Kent, 2003).

We now believe that disability doesn't define a person's identity, and people are more than their disability. Many autistics don't feel impaired. We identify with our uniqueness and often prefer "Autistic Person" over "Person with Autism."

Why Inclusion and Empowerment are Essential

Diagnosing autism has long been a matter of experts observing a person and attempting to match what they say and do against established criteria. While enormous gains have been made toward autism awareness, it is past time to create a world that autistics understand, embrace, and ultimately can engage with. We are human beings; genetically and neurologically different but thinking and feeling folks with strengths and challenges outside the "norm." People tend to fear divergence from "normal," and that fear can lead to framing those who are different as lesser beings.

Pathways to Empowerment

The theory of neurodivergence is replacing the concept of autism as a disability or disorder. Empowerment of autistic children and adults comes from presuming intelligence and teaching to our differences. Some of us exhibit behaviors deemed "undesirable," even bad. But those behaviors might be the only means some autistics have to convey their needs or distress.

Understanding autism necessitates entering our world, not forcing us to enter yours. Validate self-advocates and seek knowledge about the autistic mind from those with autism. Make the effort to forge bonds with us; seek to understand our world, our reality, and how we find meaning. Get to know us as fellow human beings, worthy of dignity.

"Inclusion is intentional. It is about identifying and removing barriers so that everyone can participate to the best of their ability" ( The Inclusive Class).
Annie Kent, MA Psychology, spent two decades working in public sector disability, mental health, and addictions advocacy and education. Diagnosed with three closely related categories of neurodiversity, a lack of awareness and understanding led to Autistic burn-out and retirement from the field. She remains an active advocate, engaging remotely with several Autism, ADHD, and Disability organizations and forums. For more information, email Annie at References anjolie1031@gmail.com.
"Canadian Human Rights Act/Loi Canadienne Sur Les Droits de La Personne." Laws-Lois.Justice.Gc.Ca/, Minister of Justice, 31 Aug. 2021, https://laws-lois.justice.gc.ca/PDF/H-6.pdf.

CLT Development Team. "The Benefits of Inclusion in the Classroom | Community Living Toronto." Community Living Toronto | Supporting Rights and Choices for People with an Intellectual Disability, https://cltoronto.ca/the-benefits-of-inclusion-in-the-classroom/. Accessed 23 Nov. 2022.

Diversity. (n.d.) Merriam-Webster. In Merriam-Webster's online dictionary (11th ed.). Retrieved November 23, 2022, from https://www.merriam-webster.com/dictionary/diversity

Donvan, John, and Caren Zucker. Smithsonianmag.Com, Jan. 2016, https://www.smithsonianmag.com/science-nature/early-history-autism-america-180957684/

Fee, Amy. "Waitlist-Plagued Ontario Autism Program Needs a Complete Rethink." Thestar.Com, 13 Feb. 2019, https://www.thestar.com/opinion/contributors/2019/02/04/waitlist-plagued-autism-program-needs-a-rethink.html.

"Guide to Disability Rights Laws | ADA.Gov." ADA.Gov, 22 Nov. 2022, https://www.ada.gov/resources/disability-rights-guide/.

Kent, Annie (2003) In our shoes: A guide to disability etiquette and sensitivity. Independent Living Resource Centre, Thunder Bay, Ontario

Kupfer, Matthew, and Kristy Nease. "Wynne Government Backtracks on Controversial Autism Funding Change." CBC.Ca, 28 June 2016, https://www.cbc.ca/news/canada/ottawa/autism-therapy-funding-restore-ontario-1.3655362.

Rhi. "Ten Things Autism Isn't." Researchautism.Org, http://researchautism.org/ten-things-autism-isnt/. Accessed 23 Nov. 2022.

Salman, Saba. "Simon Baron-Cohen: 'Neurodiversity is the next frontier. But we're failing autistic people.'" The Guardian, https://www.theguardian.com/society/2019/oct/02/simon-baron-cohen-autism-neurodiversity-brains-money. Accessed 23 Nov. 2022.

"The Canadian Charter of Rights and Freedoms." Canada.ca, Government of Canada, 1998, https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/.

# data[].attributes.attachment_link.title
Autism Advocacy: Inclusion, Empowerment, and Human Rights

# data[].attributes.attachment_link.description
"Autism isn't this strange alien thing, it's just a different way of thinking and experiencing the world. Some of us will find ourselves more or less compatible with modern living than others, we will all have different needs...but autism is not terrifying or awful, nor is it marvellous and fabulous, it just is" (Rhi).

# data[].attributes.attachment_link.readable_text
The SLN is contributed to the Self-Advocacy Curriculum from Autism NOW, the National Autism Resource and Information Center, and the Autistic Self Advocacy Network created a tool that is intended to help individuals with autism and other developmental disabilities learn more about the self-advocacy movement, celebrate neurodiversity, cultivate local self-advocacy groups, and ultimately, become and remain empowered through self-advocacy.

Resource for Self-Advocates: How to Speak Up and Be Heard

Supported Decision Making
My Voice Counts: Supported Decision Making, An Alternative to Guardianship From The Arc:
Self Advocacy Groups

Self Advocates Becoming Empowered (SABE) is a national self-advocacy organization for people with developmental disabilities in the United States. Founded in 1990, SABE has been working hard for the full inclusion of people with developmental disabilities in the community throughout the 50 states and the world.

SLN is pleased to have two SABE representatives on our Board of Directors to ensure we have a strong partnership between our organizations.

Read the SABE Spring 2014 Newsletter here. SLN Executive Director, Katie Arnold, has a great article on "Siblings Can Support Each Other To Vote" on page 3. Also, page 4 and 5 describes the great work SABE has done for the Southern Collaborative Regional Self Advocacy Technical Assistance grant project called Our Community Standing Strong. SLN is proud to be an Ally Advisory Committee member of this project and Emma Shouse represented the SLN at the Tennessee meeting.

Autistic Self Advocacy Network (ASAN) is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN's supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities. We provide information about autism to the public through a number of different educational, outreach and systems change related projects.

ASAN has released a helpful resource on supported decision-making. Learn more and access the resource.

Allies in Self Advocacy is a resource to learn what each state was doing around self-advocacy, help each state develop and present a state plan to strengthen their activities around this area, and develop national policy recommendations for AIDD and its partnering organizations. Overall, the purpose was to strengthen and enhance self-advocacy efforts in the states and nationally. The Administration on Intellectual and Developmental Disabilities (AIDD) funded self-advocacy summit and leadership gatherings of self-advocates and partners to gather information around self-advocacy activities and policies in each of the 56 U.S. states and territories. Progress has continued beyond the summits, and all are welcome to join the ongoing efforts and conversations.

Self Advocacy Resource and Technical Assistance Center - SARTAC - The mission of Self Advocacy Resource and Technical Assistance Center (SARTAC) is to strengthen the self-advocacy movement by supporting self advocacy organizations to grow in diversity and leadership.

Our Community Standing Strong-Southern Collaborative Speaks

Our Community Standing Strong, Self Advocates Becoming Empowered Regional Self Advocacy Technical Assistance Center is excited to release a video blog series on issues of concern in the southern collaborative states participating in project. The Sibling Leadership Network is an Allie member of this Advisory Committee.
Impact Feature Issue on Self-Advocacy for People with Intellectual, Developmental and Other Disabilities Sex Talk for Self-Advocates archived webinar series from SARTAC & AUCD;
30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017) A summary of data collected between 1987 and 2017, the book illustrates the progress made since the Americans with Disabilities Act was passed 31 years ago and the work yet to be done to achieve its promise.
Changing the Way We Care for Adults with Intellectual and Developmental Disabilities VIDEO SERIES
The Illinois Self-Advocacy Alliance presents:
Bridging the Gap Between Dreams and Reality

Self-advocacy, dreaming and achieving dreams truly improves the happiness and quality in our lives. As a Sib, learn about creating opportunities for self-advocacy as well as how to discover and celebrate dreams of your brothers and sisters. Stories of dreams and successes as well as low cost and no-cost creative approaches will be shared.

Click here to view the webinar.

Self-Determination, Empowerment and Informed Decision Making

SLN Board member Barb Sapharas has created this Self-Determination Handout that outlines strategies that self-advocates can use in seeking support.
Impact Feature Issue on Careers in The Arts for People with Intellectual, Developmental, and Other Disabilities

# data[].attributes.attachment_link.description
The SLN is contributed to the Self-Advocacy Curriculum from Autism NOW, the National Autism Resource and Information Center, and the Autistic Self Advocacy Network created a tool that is intended to help individuals with autism and other developmental disabilities learn more about the self-advocacy movement, celebrate neurodiversity, cultivate local self-advocacy groups, and ultimately, become and remain empowered through self-advocacy.

# data[].attributes.attachment_link.readable_text
The National Partners Council meets regularly to allow collaborative partners to exchange information on Center initiatives and activities and discuss current evidence-based resources and information that should be selected and developed for the Autism NOW Center. With the assistance of the National Partners Council, the Autism NOW Center is working to develop resources for people on the autism spectrum, their families, professionals, and the general public.

About the American Association on Intellectual and Developmental Disabilities

Since 1876, the American Association on Intellectual and Developmental Disabilities (AAIDD) has been providing worldwide leadership in the field of intellectual and developmental disabilities. We're a powerful community of leaders with a strong voice and important mission. AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.

About the Autistic Self Advocacy Network

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN's supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. Their activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities. They provide information about autism to the public through a number of different educational, outreach and systems change related projects.

About the Autism Society

Founded in 1965, the Autism Society is the oldest and largest nationwide grassroots autism organization; the mission areas include:
Advocacy - increase public awareness about the day-to-day issues faced by people on the spectrum at local, state and federal levels.

Education: cover important topics about living with autism via Autism Advocate magazine, a comprehensive website, the largest annual national conference on autism and trusted information and referral services.

Support: local chapters provide community support and education paired with nationwide referrals and a free web-based resource directory. Reach us at 800-3AUTISM or [email protected].

Service: increase access and availability of appropriate services for those on the autism spectrum across the lifespan.

Research: translate research results into applied practices that improve the everyday lives of those on the autism spectrum.

About Brandeis

Ranked in the top tier of the nation's universities, Brandeis is one of the youngest private research universities and the only nonsectarian Jewish-sponsored university in the country. Brandeis' programs emphasize interdisciplinary approaches to knowledge, applied research to real-life problems, and public engagement. Autism NOW's main contact at Brandeis is Dr. Susan Parish, the Nancy Lurie Marks Professor of Disability Policy and the Director of the Lurie Institute for Disability Policy in the Heller School for Social Policy and Management.

Dr. Parish's research examines the health and financial wellbeing of children and adults with disabilities and their caregiving families as well as family support and the impact of health policy and poverty policy on people with disabilities and their families. She currently serves as principal investigator on a National Institute on Disability and Rehabilitation Research-funded field-initiated project on community-based intervention to promote cervical and breast cancer screening for women with developmental disabilities. She also currently serves as co-principal investigator on a project funded by the Health Resources Services Administration that is examining state policy effects on health care access for children with autism.

About the Center for Community Inclusion and Disability Studies

The University of Maine Center for Community Inclusion and Disability Studies (CCIDS), Maine's University Center for Excellence in Developmental Disabilities, is an interdisciplinary education, research and community service unit of the University of Maine. The CCIDS disseminates information about autism and other developmental disabilities and provides a broad range of professional development and technical assistance related to supporting students with autism and related developmental disabilities. CCIDS faculty, staff, and students engage in a wide range of interdisciplinary disability-related research and significant public policy activities related to individuals with autism spectrum disorder and other developmental disabilities at the state and national levels. CCIDS collaborates with a wide range of community partners including the Maine Developmental Disabilities Council, the Maine Disability Rights Center, the Maine Department of Education, Speaking Up for Us, Maine Parent Federation, the Autism Society of Maine and Family Voices. CCIDS also coordinates the activities of the Maine ACT Early Summit.

About the Developmental Disabilities Institute

The Developmental Disabilities Institute at Wayne State University is Michigan's University Center for Excellence in Developmental Disabilities. DDI provides statewide programs designed to enhance the lives of persons with disabilities. It offers the following:

Education to individuals, professionals, paraprofessionals, parents and persons with disabilities

Support to communities, systems and service providers

Evaluation of programs and services

Research on disability issues

Information that contributes to training and application of knowledge

The mission at DDI is to contribute to the development of inclusive communities and quality of life for people with disabilities and their families through a culturally sensitive statewide program of interdisciplinary education, community support and services, research and dissemination of information.

About the Institute for Community Inclusion - University of Massachusetts Boston

The Institute for Community Inclusion (ICI) promotes the full inclusion of people with disabilities in every aspect of society. It accomplishes this through training, research, consultation, and clinical and employment services. Our projects increase disability inclusion throughout New England, across the United States, and internationally. The ICI is a program of the University of Massachusetts Boston and Children's Hospital Boston. It is part of the national network of University Centers for Excellence in Developmental Disabilities.

About the Institute on Disability and Human Development

The Institute on Disability and Human Development (IDHD), a University Center for Excellence in Developmental Disabilities (UCEDD) is part of the Department of Disability and Human Development, in the College of Applied Health Sciences, University of Illinois at Chicago. IDHD promotes the independence, productivity and inclusion of people with disabilities into all aspects of society. In addition to its interdisciplinary academic programs which include a masters program in disability and human development, and a doctoral program in disability studies, it is the home of several large research centers, clinical programs, and community outreach activities. The values of cultural diversity, consumer choice and self-determination are emphasized across the life course in all training, public service, and research activities of the IDHD.

About the National Association of Councils on Developmental Disabilities

The National Association of Councils on Developmental Disabilities (NACDD) serves as the national voice of the 55 State and Territorial Councils on Developmental Disabilities. NACDD supports Councils in implementing the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) and promoting the interests and rights of people with developmental disabilities and their families. The DD Act charges Councils to identify the most pressing needs of people with developmental disabilities in their state or territory and to engage in advocacy, systems change and capacity building activities to help States meet the identified needs.

About The National Council on Independent Living

The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: Centers for Independent Living (CIL), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

As a membership organization, NCIL advances independent living and the rights of people with disabilities through consumer-driven advocacy. NCIL envisions a world in which people with disabilities are valued equally and participate fully.

About the National Council on Aging

The National Council on Aging is a nonprofit service and advocacy organization headquartered in Washington, DC. NCOA is a national voice for older Americans - especially those who are vulnerable and disadvantaged-and the community organizations that serve them. It brings together nonprofit organizations, businesses, and government to develop creative solutions that improve the lives of all older adults. NCOA works with thousands of organizations across the country to help seniors find jobs and benefits, improve their health, live independently, and remain active in their communities.

About the National Disability Rights Network

The National Disability Rights Network (NDRN), is the nonprofit membership organization for the Protection and Advocacy (P&A) system and Client Assistance Program (CAP). The P&A/CAP network was established by the United States Congress to protect the rights of people with disabilities and their families through legal support, advocacy, referral, and education. The P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the country. NDRN's mission is to promote the integrity and capacity of the P&A and (CAP) national network and to advocate for the enactment and vigorous enforcement of laws protecting civil and human rights of people with disabilities.

About the National Military Family Association

The National Military Family Association is the leading nonprofit organization committed to improving the lives of military families. Our over 40 years of service and accomplishments have made them a trusted resource for families and the Nation's leaders. As the only nonprofit organization that represents the families of the Army, Navy, Air Force, Marine Corps, Coast Guard, and the Commissioned Corps of the Public Health Service and the National Oceanic and Atmospheric Administration, the Association protects benefits vital to all families, including those of the deployed, wounded, and fallen.

About the National Youth Leadership Network

The National Youth Leadership Network ( NYLN) is an organization that works to build power among youth with disabilities. It is a membership-run organization, which means that all of the work it does is led by youth with disabilities and is for youth with disabilities. The organization supports young people in becoming activists and leaders in their communities. Although all of our work is led by youth, anyone (siblings, parents, allies) is free to be a member.

About Self Advocates Becoming Empowered

Self Advocates Becoming Empowered (SABE) is a national organization run by and for people with intellectual and developmental disabilities. SABE represents over 1,200 local and state self-advocacy groups from across the nation that believe in making self-advocacy available to all people with intellectual and developmental disabilities. The voice of youth and people living in rural areas is strong throughout our networks. The leadership of SABE is elected by the grassroots. It includes equal numbers of men and women, people of many generations, people who use alternative and augmentative communication, gays and lesbians, and people from ethnically and racially diverse backgrounds. SABE believes that people should be given the same decisions, choices, rights, and chances to speak up and empower themselves as everyone else. The organization's top priorities are to close institutions and eliminate subminimum wage. Equal opportunities will result in healthy friendships, relationships, real jobs for real pay, and an even stronger presence in our communities.

About the Sibling Leadership Network

The Sibling Leadership Network ( SLN) is a national nonprofit organization created to support siblings of people with disabilities throughout the lifespan. The mission of SLN is to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families. The SLN has state chapters that connect siblings and their allies at the local level. The SLN has the following core values. It believes:

Individuals with disabilities have the same rights as all members of society to dignity, respect and the opportunity to grow and to be productive members of their communities.

Siblings of individuals with disabilities can have a powerful, positive impact on their siblings' experiences, and are uniquely positioned to help ensure their present and future care in partnership with service organizations and government.

In promoting the rights of our brothers and sisters, and of all individuals with disabilities, we are committed to advocating for policies and services that meet their needs.

Siblings can be of great support to one another to enhance both our lives and the lives of our siblings.

About Social Solutions

Social Solutions is the leading provider of performance management software for human services. This company works with organizations to connect efforts to outcomes, people to social services, and communities to stakeholders, and service providers and communities to funders. Designed by human services professionals for human services professionals, the company's Efforts to Outcomes (ETO™) software has had noted success not only enabling effective case management but also improving service quality and effectiveness and saving time. Social Solutions is also a Microsoft Gold Certified Partner, has an enterprise-wide platform for coordinating service delivery, and provides full support for the Results Based Accountability framework.

Date posted: March 29, 2011. Content created by The Autism NOW Center. Last updated: March 21, 2018.

# data[].attributes.attachment_link.title
National Partners Council | The Arc's Autism Now Center

# data[].attributes.attachment_link.description
The Arc's Autism Now Center is the nation's source for resources and information on community-based solutions for individuals with autism, other developmental disabilities, and their families. A national initiative of The Arc.

# data[].attributes.attachment_link.readable_text
Dr. Megan Neff and Patrick Casale are two neurodivergent therapists in a neurotypical world. During this podcast, they'll talk about their own personal experiences as Autistic-ADHDers. They will reflect on their lived experience as AuDHD mental health professionals, and entrepreneurs, as well as offer clinical guidance, and support. Episodes will be conversational in nature, and they'll interview other ND Folx to amplify the voices of other neurodivergent advocates and individuals as they share their authentic stories. New episodes will come out weekly, on all major platforms. Megan told Patrick, "I'll bring the chaos, You organize it." This perfectly sums up their working relationship and friendship. Reflections of two neurodivergent clinicians. Raw, Vulnerable, Affirmative As Hell.

Listen to All Episodes

# data[].attributes.attachment_link.title
Divergent Conversations | A Neurodivergent Podcast

# data[].attributes.attachment_link.description
Dr. Megan Neff and Patrick Casale are two neurodivergent therapists in a neurotypical world. During this podcast, they'll talk about their own personal experiences as Autistic-ADHDers. They will reflect on their lived experience as AuDHD mental health professionals, and entrepreneurs, as well as offer clinical guidance, and support.

# data[].attributes.headline
It's Like Having a Big White Sheet of Paper to Draw On

# data[].attributes.subject
It's Like Having a Big White Sheet of Paper to Draw On