Table des matières

Nos premières réflexions sur ‘autisme et philanthropie’

Dans le domaine de la philanthropie et de l'autisme, nous aimerions expliquer certaines choses et souligner certains points, ce qui pourrait aider à déterminer s'il existe une possibilité, une intersection, ou une interaction entre les deux (autisme et philanthropie).

Pour faire ça, laisser’s essayons de résumer les mécanismes généraux qui – selon nous – expliquer en grande partie les problèmes et difficultés des personnes autistes.

1. Manque de compréhension de l'autisme, ce qui est dû au fait que l'autisme est confondu avec les troubles du spectre autistique, et donc le tout est nécessairement vu comme une chose négative à éliminer.

2. Cela conduit au fait que les personnes autistes qui peuvent expliquer l'autisme ne sont pas vraiment écoutées., en raison du préjugé automatique selon lequel ils sont considérés comme malades ou déficients mentaux, donc leurs paroles sont écoutées ou entendues poliment mais pas sérieusement. Par conséquent, les gens restent dans l'incompréhension originelle (1), et ça devient un cercle vicieux.

3. De là, les gens considèrent l'autisme comme un problème, sans comprendre que le problème n'est pas l'autisme lui-même, mais le manque de compréhension et d'adaptation de la part des personnes non autistes (autrement dit, pour les personnes autistes, le problème n'est pas l'autisme mais les perturbations socio-générées par l'environnement social non autiste, ainsi que les refus émis par les individus non autistes).

4. Par conséquent, organisations autistes (qui sont très rares car il est très difficile pour les individus autistes de fonctionner collectivement) ne sont pas écoutés attentivement par les pouvoirs publics, et souvent ils sont complètement ignorés. Cela empêche ces autorités publiques d’acquérir une compréhension suffisante de l’autisme pour concevoir des politiques publiques adéquates sur l’autisme.. C'est d'autant plus absurde que, en même temps, ces mêmes pouvoirs publics recherchent avec impatience des solutions concernant l'autisme. Toutefois, ils se tournent uniquement vers des scientifiques médicaux non autistes, qui ne peuvent pas comprendre l'autisme à cause de leur « défectologique » les préjugés sur l'autisme et la confusion ou l'incompréhension initiale « 1 ».

5. A cause de ces erreurs, les médecins et les scientifiques qui conseillent les décideurs publics ne peuvent que fournir « solutions » qui ne conviennent pas du tout et qui causent de la souffrance (pour nous, personnes autistes) et/ou violer gravement les droits de l’homme, égalité, etc.

Par exemple:
5.1. Exclusion au motif que nous sommes « pas normal » ou « incapable » (quand nous sommes simplement différents des gens ordinaires);
5.2. Essayer de « correct », « effacer » ou « retirer » notre autisme, ce qui est absurde puisque c'est notre nature, et les personnes autistes devraient pouvoir recevoir une éducation suffisante et apprendre des règles sociales non autistes, MAIS sans renoncer à leur autisme, qui a des qualités intéressantes et utiles (qui sont souvent malheureusement « enterré » à cause de toutes les souffrances et « retrait de soi » résultant des troubles sensoriels et mentaux socio-générés susmentionnés);
5.3. Médicament (qui sert principalement à « calme » nous sommes à terre à cause des crises et des souffrances, mais tout cela pourrait être évité en abordant les choses en amont, c'est-à-dire en éliminant les perturbations socio-générées et les souffrances et médicaments qui en résultent);
5.4. Surprotection, qui découle d'un réflexe parental et social légitime fondé sur la « principe de précaution » parce que les gens ne savent pas quoi faire, mais le problème est que cette surprotection est l'un des principaux obstacles qui empêchent les individus autistes d'évoluer favorablement.: au contraire, les personnes autistes ont besoin de vivre un maximum d'expériences différentes et originales pour apprendre la vie et la société et prendre confiance en elles.;
5.5. De nombreuses mauvaises habitudes et principes erronés inculqués par le système non autiste, comme l'idée que « reconnaissance sociale » serait la voie royale vers « déverrouillage » personnes autistes, ce qui est absurde car il y a une confusion entre « reconnaissance sociale » et « amour propre », dans la mesure où l'opinion des étrangers sur nous, qui en général ne nous comprennent pas du tout, ne vaut rien, il est donc illogique de lui donner de la valeur et de fonder notre propre estime de soi dessus (c'est absurde et difficile pour les personnes autistes de faire cela car pour cela ils doivent jouer un rôle véritablement contraire à leur fonctionnement, mais c'est surtout dangereux car tôt ou tard le château de cartes s'effondre ou la bulle éclate, et comme les autistes prennent les choses très au sérieux, alors c'est la dépression ou le suicide);
5.6. Et d'autres problèmes, vices, et les mauvais traitements (même involontaire) résultant de l'idée erronée selon laquelle l'autisme est « mauvais » et doit être éliminé ou corrigé (tout cela à cause de la confusion initiale 1 entre l'autisme et les problèmes liés à l'autisme), y compris les désirs eugéniques (c'est à dire., visant à « empêcher la naissance des personnes autistes »).

6. Parce que les pouvoirs publics ne nous écoutent pas assez ou pas du tout, leurs décisions sont forcément mauvaises et ne nous permettent pas d'avancer dans la bonne direction, celle de la liberté et de l’égalité fondée sur l’égalité avec les autres. En effet, pour y parvenir, la société et toutes ses composantes doivent être accessibles, ce qui n'est pas du tout le cas. La société n'est pas accessible aux personnes autistes car rien (ou presque) se fait dans ce sens. Rien n'est fait car il n'existe pas de politiques ou de normes d'accessibilité pour les handicaps autistiques.

Cet écart vient de deux choses:
6.1. Le fait que cela ne viendrait pas à l’esprit de la plupart des politiciens (dans beaucoup de pays) faire des efforts et mettre en œuvre des mesures pour faciliter la vie d’une population (personnes autistes) ils considèrent « malade » ou comme « un problème », ce qui les encourage plutôt à essayer de « éliminer l'autisme » (scientifiquement ou médicalement), ou à défaut, à « reformater les individus autistes pour les rendre non autistes », ce qui est pour eux « la solution ».
(Pour mieux comprendre, on peut faire un parallèle avec la population des homosexuels: aujourd'hui, dans la plupart des pays, personne n'y penserait « guérir l'homosexualité », et il n'y a pas de politique de « rééducation » ou des choses cherchant à transformer les homosexuels en hétérosexuels, ou pour les forcer à prétendre être hétérosexuels. Mais pour les personnes autistes, réflexes sociaux et politiques, même à notre époque, viser « correct » nous.)
6.2. Ils n’ont tout simplement aucune idée de ce que pourrait être l’accessibilité pour l’autisme., et, pire, la plupart du temps, la simple idée de cela ne leur vient même pas à l'esprit. Dans certains cas, ils ont essayé d'aborder le sujet, mais ils ont abandonné. S'ils nous écoutaient, ils comprendraient ce que c'est et comment le mettre en œuvre, mais ils n’ont pas’Je ne nous prends pas au sérieux.

7. Incidemment, organisations caritatives ou humanitaires (y compris le secteur de la philanthropie) il semble que je sois dans le même état d'esprit, et chaque fois que nous leur avons demandé de l'aide, ils nous ont dit qu'ils s'occupaient d'autres domaines mais pas de l'autisme. Nous avons compris que les organisations, gouvernemental ou non gouvernemental, faire face à l'autisme, faites-le dans un « médical et défectologique » chemin, avec un sentiment de supériorité sur les personnes autistes (considéré comme intrinsèquement défectueux), et il semble que cela explique pourquoi, lorsque les organisations autistes demandent de l'aide et veulent défendre l'autisme comme une variante naturelle de l'être humain, ça doit paraître « fou » ou surréaliste ou incompréhensible, et donc, étant donné les préjugés dans lesquels presque tout le monde est imprégné, le soi-disant « fou » La nature de nos demandes ou projets ou concepts doit simplement être considérée comme une preuve ou une confirmation de la plus ou moins grande « délirant » nature des idées autistiques.

8. En conclusion, il y a un très profond malentendu, mais il y a aussi un cercle vicieux qui nous empêche d'être entendus avec suffisamment d'attention pour éliminer ce malentendu. (Parfois les gens nous écoutent vraiment, et puis ils comprennent, mais c'est très rare, et cela n'arrive pas dans les sphères publiques que nous ciblons, qui sont les plus importants parce que’c'est là que le « leviers » sont).

9. Donc, concernant le domaine de « philanthropie », il serait très utile que les organisations philanthropiques nous aident à faire tomber ces barrières absurdes et néfastes, construire des ponts, faciliter les relations et la communication avec les décideurs publics. Nous avons aussi besoin d'argent, et nous avons également besoin, surtout, assistance humaine et technique (« mécénat d'entreprise »?), mais l'argent et « force » sont insuffisants face à des systèmes administratifs bureaucratiques qui ne considèrent que superficiellement la question de l’autisme, se référant uniquement à « scientifique » données, qui sont faux, comme nous pouvons le démontrer mais nous ne sommes pas autorisés à le faire car cela semble incroyable.

10. Informations supplémentaires:

10.1. Autrement dit, les gens regardent l'autisme par le mauvais côté du télescope et disent (évidemment) que c'est le cas’ça ne marche pas.

10.2. Une autre analogie peut être faite avec le concept de « Terre plate. » C'est-à-dire, pour les personnes qui ne comprennent pas l'autisme, l'autisme est comme une chose mystérieuse aux confins de la Terre plate. Dans leur monde (où ils ne s'aventurent pas trop loin, pas loin de « normalité »), tout leur semble logique, et ils croient que la Terre est plate, que leur « normale » le système est correct (comme avant quand les gens pensaient que la Terre était au centre de l'univers, etc.). Mais quand on est autiste et qu'on comprend l'autisme, non-autisme, et les relations entre les deux, c'est comme si l'on se rendait compte que la Terre n'est pas plate mais sphérique parce qu'on comprend la logique de tout cela, il n'y a plus de mystère ou « puzzle », et on comprend aussi très bien que l'idée que « normalité = exactitude » c'est faux (évidemment). Incidemment, on comprend aussi à quel point l'autisme peut être utile, en termes de créativité et de résolution de problèmes, et aussi comme révélateur des malheurs sociaux et « mauvais ajustements », que nous détectons facilement grâce à notre très grande sensibilité à « violations de l'harmonie ». La notion d'harmonie et de cohérence est centrale dans l'autisme, mais visiblement cette idée fait rire les grands spécialistes de l'autisme, OMS (comme les médecins de « la planète des singes ») je pense que nous sommes incohérents et perturbés, alors que ce n'est pas ça mais le contraire, c'est notre grande cohérence et sensibilité qui nous font « résonner » comme un verre de cristal ou comme une cloche, c'est à dire que l'on reflète ou révèle ou reflète les disharmonies ambiantes.

Our Insights about Philanthropy’Le rôle de s dans la compréhension de l'autisme

(Sent by email to the Co-Facilitators of WG9 on 25/04/2024)

Dans le domaine de la philanthropie et de l'autisme, notre objectif est d'élucider des aspects spécifiques et de souligner les éléments clés qui pourraient faire la lumière sur des liens potentiels, chevauchements, ou des synergies entre les deux domaines.

Pour y parvenir, laisser’s s’efforcer de décrire les mécanismes fondamentaux qui, dans notre vision, sous-tendent principalement les défis et les obstacles rencontrés par les personnes atteintes du spectre autistique.

1. Démêler les idées fausses: Autisme contre. Troubles du spectre autistique

Une compréhension inadéquate de l'autisme provient souvent d'une confusion entre l'autisme et les troubles du spectre autistique. (TSA), conduisant à une perception de l’autisme comme étant intrinsèquement négatif et quelque chose à éradiquer. Ce malentendu perpétue les idées fausses et entrave les efforts visant à soutenir efficacement les individus de tous les horizons..

2. Des voix négligées: Le cycle perpétuel de l’incompréhension de l’autisme

Cela conduit à négliger les personnes autistes qui possèdent la capacité d’articuler leurs expériences avec l’autisme., souvent en raison du préjugé préconçu selon lequel ils sont perçus comme malades ou intellectuellement déficients. Par conséquent, leurs idées sont simplement reconnues poliment plutôt que prises au sérieux. Par conséquent, le malentendu initial persiste (comme indiqué au point 1), perpétuer un cercle vicieux d’incompréhension.

3. Autisme’Le vrai défi: Barrières non autistiques

Par conséquent, l'autisme est souvent perçu comme un problème, négliger la distinction cruciale selon laquelle le problème ne réside pas dans l'autisme lui-même, mais plutôt avec une compréhension et une adaptation insuffisantes de la part des individus non autistes. En substance, pour les personnes autistes, le principal défi ne vient pas de l’autisme en soi, mais plutôt des perturbations socio-générées au sein de l'environnement social non autistique, ainsi que les rejets vécus par les individus non autistes.

4. Des voix négligées: Le mépris des organisations autistes dans l’élaboration des politiques

Par conséquent, les organisations autistes – bien que rares en raison des difficultés inhérentes au fonctionnement collectif des individus autistes – ne bénéficient souvent pas d’une écoute attentive de la part des autorités publiques et sont souvent complètement ignorées.. Ce manque d’engagement freine les pouvoirs publics’ capacité à cultiver une compréhension globale de l’autisme nécessaire à l’élaboration de politiques efficaces. L'ironie réside dans le fait que, même si ces entités publiques recherchent activement des solutions aux problèmes liés à l'autisme, ils s'appuient principalement sur des scientifiques médicaux non autistes, dont les perspectives sont souvent teintées par « défectologique » préjugés et sont influencés par la confusion ou l’incompréhension initiale décrite au point 1.

5. Remettre en question les idées fausses: Conséquences des approches malavisées de l'autisme

En raison de ces idées fausses, les professionnels de la santé et les scientifiques qui conseillent les décideurs publics proposent souvent « solutions » qui sont profondément inadaptés et entraînent des souffrances pour les personnes autistes, tout en violant de manière flagrante les droits de l’homme et les principes d’égalité.

Voici quelques exemples:

5.1. Exclusion: Les personnes autistes sont souvent exclues parce qu’elles sont perçues comme « anormal » ou « incapable, » bien qu'ils possèdent simplement des différences par rapport aux individus neurotypiques.

5.2. Essayer de « Correct » Autisme: Des efforts pour « correct, » « effacer, » ou « retirer » l'autisme néglige le fait que l'autisme est un aspect inhérent à l'individu’la nature. While autistic individuals can benefit from education and learning non-autistic social norms, it should not require renouncing their autism, which often embodies unique and valuable qualities, albeit obscured by societal challenges.

5.3. Overmedication: Medications are often prescribed to manage crises and suffering caused by socio-generated disruptions. However, addressing underlying issues upstream, such as eliminating socio-generated disturbances and resultant suffering, could potentially mitigate the need for medications.

5.4. Overprotection: Well-intentioned overprotection, based on the « precautionary principle, » impedes the favorable development of autistic individuals. Autistic individuals require diverse and authentic experiences to learn about life and society, fostering self-confidence.

5.5. Misguided Notions of Social Recognition: The emphasis on « social recognition » as essential for unlocking the potential of autistic individuals is flawed. Confusing « social recognition » with « self-esteem » disregards the intrinsic value of an individual’s self-worth, independent of the opinions of strangers who often lack understanding of autism. This expectation places autistic individuals in a precarious position, leading to depression or suicidal ideation when they struggle to conform to societal expectations.

5.6. Eugenic Desires and Other Mistreatments: Misguided perceptions of autism as inherently negative fuel desires for eugenic practices aimed at preventing autistic individuals from being born. This stems from the original confusion between autism and autism-related challenges, perpetuating harmful attitudes and actions toward autistic individuals, even when unintended.

These flawed approaches not only fail to address the core issues but also exacerbate the marginalization and suffering experienced by autistic individuals, highlighting the urgent need for a paradigm shift in understanding and supporting autism.

6. The Challenge of Inaccessible Societal Structures: Implications for Autistic Individuals

Public authorities’ failure to sufficiently listen to autistic voices leads to erroneous decisions that hinder progress towards freedom and equality, grounded in parity with others. Societal accessibility remains a distant goal for autistic individuals due to the lack of concerted efforts or established accessibility standards tailored to their needs. This disparity arises from two primary factors:

Firstly, many politicians, influenced by outdated perceptions, view autism as an inherent problem to be solved rather than a facet of human diversity deserving accommodation. This mindset perpetuates a focus on « eliminating autism » or attempting to « normalize » autistic individuals, akin to historical attempts to « cure » homosexuality.
Secondly, there exists a pervasive lack of awareness and understanding regarding the concept of accessibility for autism among policymakers. In many cases, the notion of autistic accessibility is not even considered, let alone prioritized. Despite sporadic attempts to address the issue, such efforts often falter due to a fundamental misunderstanding of autistic needs and perspectives.

If public authorities were more attuned to the experiences and insights of autistic individuals, they would gain a clearer understanding of what accessibility entails and how to effectively implement measures to foster inclusivity. However, the prevailing lack of serious consideration for autistic voices perpetuates a cycle of neglect and marginalization.

7. Navigating the Margins: Autistic Perspectives in Charitable and Humanitarian Sectors

Charitable and humanitarian organizations, including those within the philanthropic realm, often exhibit a similar mindset regarding autism. When approached for assistance, these organizations frequently redirect autistic individuals, citing their focus on other areas besides autism. It has become apparent that both governmental and non-governmental entities addressing autism tend to approach the issue from a « medical and defectological » perspective, characterized by a perceived superiority over autistic individuals who are often viewed as inherently flawed.

This entrenched mindset explains the reluctance of charitable organizations to engage with autistic advocacy efforts that seek to promote autism as a natural variation of human diversity. Such requests or projects advocating for autism acceptance may be perceived as unconventional or surreal due to prevailing prejudices surrounding autism. Consequently, the perceived « craziness » of these requests or concepts is often interpreted as further evidence of the supposed « delirious » nature of autistic ideas, reinforcing existing biases and barriers to meaningful engagement.

8. Breaking the Cycle: Overcoming Misunderstanding in Public Discourse

In summary, a profound misunderstanding surrounding autism persists, perpetuating a vicious cycle that hinders meaningful dialogue and effective action. While occasional instances of genuine listening and understanding do occur, they are rare, particularly within the crucial public spheres we seek to engage with, where significant influence and decision-making power reside. This ongoing cycle of miscommunication and neglect underscores the urgent need for concerted efforts to amplify autistic voices and dismantle barriers to comprehension and acceptance.

9. Forging Partnerships for Progress: The Role of Philanthropy in Autism Advocacy

In light of these challenges, philanthropic organizations have a crucial role to play in dismantling the barriers that impede progress for autistic individuals. It is imperative that these organizations assist in breaking down the absurd and harmful barriers that obstruct meaningful engagement with public policymakers. This entails not only providing financial support but also offering essential human and technical assistance, such as corporate sponsorship and expertise.

However, financial resources and sheer determination alone are insufficient to navigate the bureaucratic administrative systems that often overlook or superficially consider the complexities of autism. These systems tend to rely solely on « scientific » data, which may be flawed or incomplete. Autistic individuals possess valuable insights that challenge conventional wisdom, yet they are often marginalized or dismissed. Philanthropic support can help amplify autistic voices and advocate for evidence-based policies that foster genuine understanding and inclusivity.

10. Reframing Autism: Insights from Within

10.1. When we peer through the lens of misunderstanding, viewing autism as a flaw rather than a variation, it distorts our perception, much like looking through the wrong end of a telescope. This distorted view leads to misguided conclusions about the functionality and potential of autistic individuals, hindering our ability to appreciate the richness of their experiences and contributions.

10.2. A deeper analogy lies in the concept of the « Flat Earth. » For those unacquainted with autism, it exists on the fringes of comprehension, akin to the mysterious edges of a flat world. Within their insular perspective, where conformity prevails, everything appears logical, and the prevailing norms are unquestioned. However, for autistic individuals who intimately understand autism and its interplay with non-autism, it’s akin to realizing that the Earth is not flat but spherical. This profound realization dismantles the illusion of « normality equals correctness. » Autistic individuals perceive the inherent value of their neurodiversity, recognizing its pivotal role in fostering creativity, problem-solving, and its unique ability to unveil societal shortcomings through their acute sensitivity to disharmony.

The core tenets of harmony and coherence are central to autism, often overlooked by mainstream perceptions. Instead, autistic behavior is frequently misconstrued as incoherent or disturbed. In reality, it’s the remarkable coherence and sensitivity of autistic individuals that enable them to resonate like crystal glasses, reflecting and unveiling the disharmonies pervasive in their environment. Despite this profound insight, mainstream autism specialists may struggle to grasp this perspective, akin to inhabitants of an alien world unable to fathom the clarity of autistic understanding.

Synthesis – Beyond Misconceptions: Navigating the Intersection of Philanthropy and Autism

Exploring the intersection of philanthropy and autism is essential for understanding and addressing the challenges faced by individuals on the autism spectrum. Often, misconceptions arise from a lack of distinction between autism and autism spectrum disorders (ASD), leading to negative perceptions and hindering effective support systems. Additionally, the voices and experiences of autistic individuals are frequently overlooked, perpetuating a cycle of misunderstanding and marginalization.

It’s crucial to recognize that the core challenges lie not within autism itself but in the societal barriers and misconceptions surrounding it. Public authorities often fail to engage with autistic organizations, limiting their ability to develop inclusive policies. Misguided approaches, such as exclusion and overmedication, further compound the issue, exacerbating the marginalization and suffering experienced by autistic individuals.

Moreover, the lack of awareness and understanding of autism’s unique needs often results in inaccessible societal structures, hindering progress towards equality and inclusion. Philanthropic organizations, despite their potential to enact positive change, may overlook autism advocacy efforts due to prevailing misconceptions and biases.

Breaking this cycle of misunderstanding requires reframing autism as a natural variation of human diversity rather than a flaw to be corrected. This shift in perspective is crucial for fostering genuine understanding, acceptance, and meaningful engagement with autistic individuals and their communities.

Autistan Recommendations

(Sent by email to the Co-Facilitators of WG9 on 25/04/2024)

1. Promoting Education and Awareness

Philanthropic organizations can allocate resources to educational campaigns aimed at dispelling misconceptions surrounding autism and distinguishing between autism and autism spectrum disorders. By fostering a deeper understanding of autism as a natural variation of human diversity, these efforts can help shift societal perceptions towards acceptance and inclusion.

2. Elevating Autistic Voices

Philanthropy can support initiatives that amplify the voices of autistic individuals, providing platforms for them to share their experiences and insights. By elevating autistic perspectives, philanthropic organizations can help counteract the perpetuation of stereotypes and biases, fostering greater empathy and understanding within society.

3. Empowering Autistic Organizations

Philanthropic support can be directed towards empowering autistic-led organizations, providing them with the resources and capacity-building opportunities needed to advocate effectively for systemic change. By strengthening the advocacy efforts of autistic organizations, philanthropy can ensure that policies and programs are informed by the lived experiences and priorities of autistic individuals.

4. Advancing Accessibility and Inclusivity

Philanthropic organizations can fund initiatives aimed at promoting accessibility and inclusivity for autistic individuals across various domains, including education, employment, healthcare, and public spaces. By investing in the development of autism-friendly environments and accommodations, philanthropy can help create a more equitable society where autistic individuals can thrive.

5. Facilitating Collaboration and Partnership

Philanthropic organizations can play a pivotal role in facilitating collaboration and partnership between autistic organizations, policymakers, researchers, and other stakeholders. By fostering dialogue and cooperation, philanthropy can catalyze collective action towards addressing the systemic barriers and challenges faced by autistic individuals.

6. Supporting Evidence-Based Practices

Philanthropy can support research initiatives that seek to identify evidence-based practices for supporting autistic individuals and promoting their well-being. By funding research on effective interventions, accommodations, and support services, philanthropy can ensure that resources are directed towards strategies that have been demonstrated to be beneficial and respectful of autistic individuals’ autonomy and rights.

7. Promoting Diversity, Equity, and Inclusion

Philanthropic organizations can prioritize diversity, equity, and inclusion within their own operations and grantmaking processes. By actively seeking out and supporting initiatives that promote the rights and dignity of autistic individuals, philanthropy can contribute to building a more just and inclusive society for all.

These recommendations are intended to serve as a starting point for philanthropic action in the realm of autism advocacy and sustainable development, recognizing the importance of collaboration, empowerment, and evidence-based approaches in driving meaningful change.

Survey by the Working Group 9

(Replied on 25/04/2024)

Directions by WG9:
Purpose of this survey
For each golden thread, we are looking for recommendations, evidence and case studies (of your work or others you are aware of) answering the following question:
– What specific challenge do you want to be addressed within this golden thread and why? What do you recommend? What is philanthropy’s role in providing solutions?
– What evidence do you have to back up your recommendation?
The information obtained will provide content for proposed recommendations and solutions to G20 governments showcasing philanthropy’s support for the reform of existing structures (economic, social and otherwise).
– Recommendations should be SMART (Specific, Measurable, Achievable, Relevant and Time-bound) and targeted at policy-makers (primarily G20, but also beyond if needed).
– Connect any description of the challenge and your own work to other areas and think from a cross-cutting point of view. The main areas that WG9 members identified are human rights and social justice; climate change; health; education; environment.
– Highlight philanthropy’s unique contributions to solutions.

Golden Thread N°1: Challenging the structures of economic, climate and social inequalities

WG9: Definition of Golden Thread N°1:
GT1 (‘Umbrella thread’): Challenging the structures of economic, climate and social inequalities

- - Philanthropy plays a role in transforming current economic and social models that exacerbate climate change, environmental degradation and drive social injustices and inequalities. We must also define what we mean by inequality and structural challenges to give shape to the poly-crisis that we are facing collectively.
  - This thread focuses on identifying the transformative agendas that philanthropy wants to engage with, including innovations and case studies that showcase philanthropies’ unique contribution to addressing the world’s challenges. We need to demonstrate that transformative change, not incremental change, is possible.
  - It involves resourcing structural change solutions that lack market support for the benefit of most-vulnerable communities. This requires also acknowledging the need for philanthropy to challenge how wealth is being generated in the first place, and prioritize connecting national to the global.

1.1. What specific challenge do you want to be addressed within this golden thread and why? Provide evidence showing that the challenge (eg: statistics) and a (policy) gap in addressing it exists.

Response:
The specific challenge within this golden thread is the systemic exclusion and marginalization of autistic individuals within economic, climate, and social structures. Statistics indicate that autistic individuals face significant barriers to employment, education, and healthcare, resulting in economic, climate, and social inequalities. Despite existing policies promoting diversity and inclusion, there remains a gap in addressing the unique needs of autistic individuals, leading to inadequate support and accommodations. Philanthropy’s role in addressing this challenge is crucial, as it can support initiatives aimed at promoting inclusivity and advocating for policies that prioritize the rights and well-being of autistic individuals.

1.2. What do you recommend? What is philanthropy’s role in providing solutions?

Response:
We recommend that philanthropy invests in initiatives aimed at promoting the inclusion and empowerment of autistic individuals within economic, climate, and social systems. This may include funding programs focused on improving access to education and employment opportunities for autistic individuals, as well as supporting advocacy efforts to ensure that policies and practices are inclusive and respectful of their rights. Philanthropy can also play a key role in raising awareness and promoting acceptance of autism within society, fostering a more inclusive and supportive environment for autistic individuals to thrive.

1.3. What evidence do you have to back up your recommendation? Give examples/case studies of existing work (your own or others) showing philanthropy’s unique contribution in addressing the challenge as well.

Response:
Unfortunately, we have not found any philanthropic or charitable organizations that have directly addressed the challenges faced by autistic individuals as outlined in our complete version of recommendations. This lack of examples underscores the pervasive barriers and misconceptions surrounding autism within philanthropy and charitable sectors. Despite the urgent need for initiatives aimed at promoting the inclusion and empowerment of autistic individuals, philanthropic efforts in this area remain scarce. The absence of philanthropic contributions highlights the systemic challenges and gaps in addressing the unique needs of autistic individuals within economic, climate, and social systems. However, we remain hopeful that increased awareness and advocacy efforts will lead to greater philanthropic engagement and support for initiatives focused on promoting the rights and well-being of autistic individuals in the future.

Golden Thread N°2: Strengthening public policies effectiveness

WG9: Definition of Golden Thread N°2:
GT2: Strengthening public policy effectiveness

- - Philanthropies reach vulnerable communities and are at the forefront of tackling climate change, and economic and social inequalities. They do this on the global, national and local.
  - These efforts can be done at scale – not only, but especially if taken up and supported by public policies.
  - In what ways can philanthropies strengthen public policies effectiveness to promote sustainable development and system transformation?

2.1. What specific challenge do you want to be addressed within this golden thread and why? Provide evidence showing that the challenge (eg: statistics) and a (policy) gap in addressing it exists.

Response:
Within this golden thread, the specific challenge we aim to address is the lack of effective public policies that adequately support and empower autistic individuals. Despite the growing recognition of the rights and needs of autistic individuals, there remains a significant policy gap in addressing the systemic barriers they face in areas such as education, employment, and healthcare. Statistics indicate that autistic individuals continue to experience disproportionately high rates of unemployment, underemployment, and social isolation, highlighting the urgent need for policy interventions to promote their inclusion and well-being. Moreover, existing policies often fail to account for the diverse needs and strengths of autistic individuals, resulting in inadequate support and accommodations. Philanthropy has a critical role to play in advocating for policy reforms that prioritize the rights and dignity of autistic individuals and ensure their full participation in society.

2.2. What do you recommend? What is philanthropy’s role in providing solutions?

Response:
We recommend that philanthropy plays a proactive role in advocating for policy reforms that promote the inclusion and empowerment of autistic individuals. This may include funding research initiatives to identify best practices and evidence-based interventions for supporting autistic individuals across various domains. Philanthropy can also support advocacy efforts aimed at raising awareness of the unique needs and strengths of autistic individuals among policymakers and the public. By leveraging its resources and expertise, philanthropy can help drive systemic change and ensure that public policies are inclusive and respectful of the rights of autistic individuals.

2.3. What evidence do you have to back up your recommendation? Give examples/case studies of existing work (your own or others) showing philanthropy’s unique contribution in addressing the challenge as well.

Response:
(Same as for Golden Thread N°1) Unfortunately, we have not found any philanthropic or charitable organizations that have directly addressed the challenges faced by autistic individuals as outlined in our complete version of recommendations. This lack of examples underscores the pervasive barriers and misconceptions surrounding autism within philanthropy and charitable sectors. Despite the urgent need for initiatives aimed at promoting the inclusion and empowerment of autistic individuals, philanthropic efforts in this area remain scarce. The absence of philanthropic contributions highlights the systemic challenges and gaps in addressing the unique needs of autistic individuals within economic, climate, and social systems. However, we remain hopeful that increased awareness and advocacy efforts will lead to greater philanthropic engagement and support for initiatives focused on promoting the rights and well-being of autistic individuals in the future.

Golden Thread N°3: Promoting a more empowering civic space

WG9: Definition of Golden Thread N°3:
GT3: Promoting stronger civic spaces

- - The shrinking of civic spaces undermines democracy and human rights needs to be reversed. This also consists of fostering civil society engagement in local and global spaces.
  - Philanthropies can play a key role in creating a more inclusive and supporting environment for civil society organizations. This includes protecting and enhancing the ability to give to a diversity of causes, the need to exist and operate independently, creating more participatory policy-making mechanisms and building the societal demand to fight misinformation and polarization. Being able to deliver a renewed social contract for more inclusive, fair and resilient societies will also mean considering issues as non-political agendas.

3.1. What specific challenge do you want to be addressed within this golden thread and why? Provide evidence showing that the challenge (eg: statistics) and a (policy) gap in addressing it exists.

Response:
The specific challenge within this golden thread is the limited participation and representation of autistic individuals and their organizations in civic spaces and decision-making processes. Despite the growing recognition of the rights and needs of autistic individuals, there remains a significant gap in ensuring their meaningful inclusion and engagement in civil society. Statistics indicate that autistic individuals often face barriers to accessing and participating in civic spaces due to systemic discrimination, lack of accommodations, and limited opportunities for involvement. Additionally, existing policies and practices may not adequately address the unique needs and perspectives of autistic individuals, further exacerbating their exclusion from civic life. Philanthropy has a critical role to play in advocating for the rights of autistic individuals and supporting initiatives that promote their full participation and representation in civic spaces and decision-making processes.

3.2. What do you recommend? What is philanthropy’s role in providing solutions?

Response:
We recommend that philanthropy supports initiatives aimed at promoting the inclusion and empowerment of autistic individuals in civic spaces and decision-making processes. This may include funding programs focused on providing training and support for autistic advocates and organizations to effectively engage in civil society activities. Philanthropy can also support efforts to increase awareness and understanding of autism within civic organizations and institutions, fostering a more inclusive and supportive environment for autistic individuals to participate and contribute. By investing in initiatives that promote the rights and agency of autistic individuals, philanthropy can help strengthen civic spaces and ensure that they are more inclusive and representative of diverse perspectives.

3.3. What evidence do you have to back up your recommendation? Give examples/case studies of existing work (your own or others) showing philanthropy’s unique contribution in addressing the challenge as well.

Response:
(Same as for Golden Thread N°1) Unfortunately, we have not found any philanthropic or charitable organizations that have directly addressed the challenges faced by autistic individuals, as outlined in our complete version of recommendations. This lack of examples underscores the pervasive barriers and misconceptions surrounding autism within philanthropy and charitable sectors. Despite the urgent need for initiatives aimed at promoting the inclusion and empowerment of autistic individuals, philanthropic efforts in this area remain scarce. The absence of philanthropic contributions highlights the systemic challenges and gaps in addressing the unique needs of autistic individuals within economic, climate, and social systems. However, we remain hopeful that increased awareness and advocacy efforts will lead to greater philanthropic engagement and support for initiatives focused on promoting the rights and well-being of autistic individuals in the future.

Golden Thread N°4: Enabling environment for philanthropies to develop and achieve impact

WG9: Definition of Golden Thread N°4:
GT4: Enabling environment for philanthropies

- - Philanthropy redistributes wealth and resources to civil society to address climate, economic and social inequalities. Yet, it faces constraints such as restrictive regulations, fiscal and tax barriers, or capital controls – all hindering cross-border activity.
  - Other barriers are philanthropies’ access to financial services (bank de-risking), registration and reporting burdens, and a lack of parity with the private sector.
  - While they need to demand more freedom for themselves, philanthropies also need to scrutinize sources of funding that they channel as charitable giving. In what ways can the enabling environment for philanthropy be improved?

4.1. What specific challenge do you want to be addressed within this golden thread and why? Provide evidence showing that the challenge (eg: statistics) and a (policy) gap in addressing it exists.

Response:
The specific challenge within this golden thread is the limited access to financial services and regulatory barriers faced by autistic-led organizations and initiatives seeking philanthropic support. Autistic individuals and their organizations often encounter difficulties in accessing banking services, securing funding, and complying with complex reporting requirements, which hinders their ability to develop and achieve impact. Statistics indicate that autistic-led organizations are disproportionately affected by financial and regulatory barriers, with many struggling to sustain their operations and fulfill their missions due to limited resources and support. Moreover, existing policies and regulations may not adequately address the unique needs and challenges faced by autistic individuals and their organizations, further exacerbating their exclusion from philanthropic opportunities. Philanthropy has a crucial role to play in advocating for reforms that promote the inclusion and empowerment of autistic-led organizations and initiatives, ensuring that they have equitable access to resources and opportunities.

4.2. What do you recommend? What is philanthropy’s role in providing solutions?

Response:
We recommend that philanthropy takes proactive measures to address the financial and regulatory barriers faced by autistic-led organizations and initiatives. This may include providing targeted funding and technical assistance to support capacity-building efforts aimed at enhancing financial management skills, navigating regulatory requirements, and accessing banking services. Philanthropy can also play a critical role in advocating for policy reforms that promote greater inclusivity and equity within the philanthropic sector, ensuring that autistic-led organizations and initiatives are not disproportionately disadvantaged. By investing in initiatives that strengthen the enabling environment for philanthropy, philanthropy can help foster a more diverse, inclusive, and impactful sector that reflects the full diversity of human experience and perspectives.

4.3. What evidence do you have to back up your recommendation? Give examples/case studies of existing work (your own or others) showing philanthropy’s unique contribution in addressing the challenge as well.

Additional thoughts (maybe a synthesis of what we are trying to explain)

(sent in the Zoom text chat on 09/05/2024, acknowledged by the co-facilitator by « Thank you for sharing »)

1. Navigating the Blind Spot: Challenges Faced by Autistic Initiatives in Philanthropy

It seems that the main challenge lies in the fact that philanthropic organizations often overlook autistic NGOs or similar initiatives because there are so few of them.

Moreover, there’s a prevailing belief that autism is a condition to be cured, which means that funds typically go towards research aimed at finding a cure or projects focused on « normalizing » autistic individuals.

Therefore, when initiatives like ours, which prioritize acceptance and inclusion, approach philanthropic organizations, they’re often left uncertain about how to proceed because supporting such initiatives isn’t part of their established plans, which results in ignoring us or just replying vague and polite refusal answers.

So in conclusion there is a blind spot where those who are most marginalized remain unnoticed and unsupported (probably not only the autistic people), even though they’re in dire need of assistance.

It would be really useful to address this issue in your brainstorming sessions for developing recommendations for WG9.

By highlighting this problem, we can work towards ensuring that philanthropic efforts become more inclusive and supportive of all autistic individuals, not just those aligned with traditional views on autism.

Summary

Philanthropic organizations often overlook autistic initiatives due to their rarity and a focus on curing autism. When initiatives promoting acceptance and inclusion seek support, they encounter uncertainty from philanthropies, leading to neglect or vague refusals. This creates a blind spot, leaving marginalized individuals unsupported. Addressing this issue in brainstorming sessions can lead to more inclusive philanthropic efforts benefiting all autistic individuals.

2. Bridging the Gap: Philanthropy’s Role in Advocating for Autistic Needs

And of course, in addition to direct assistance to autistic initiatives, which are very rare, it would also be beneficial if the philanthropic sector could help governments better understand the true needs of autistic individuals in order to correct (or create) public policies in this regard.

To do this, it is necessary to ‘build bridges’ between ‘autism’ and ‘non-autism.’

Given that public authorities in countries are very inaccessible and operate in a very ‘bureaucratic’ manner diametrically opposed to autism, we have a real need for independent facilitators to provide the ‘missing link’ between the two worlds.

We, the Autistan Diplomatic Organization, are trying to build these bridges, but the task is truly beyond our very limited means (notably due to the general and governmental lack of attention and biases).

If public authorities, in the current state of affairs, are unable to listen to us, and if we, without means and with social relationship disabilities, cannot make ourselves heard, then the contribution of an intermediary sector would be necessary. Could this be ‘philanthropy’?

If so, then it would only need to truly listen to us seriously, in order to finally understand, and facilitate the necessary mediation. And this does not require a lot of money.

Summary

The philanthropic sector can play a crucial role in advocating for autistic needs beyond direct assistance to rare autistic initiatives. By helping governments understand these needs and shaping public policies, philanthropy can bridge the gap between autism and mainstream society. However, public authorities often operate in a bureaucratic manner that is inaccessible to autistic individuals, necessitating independent facilitators. While limited by modest resources and governmental biases, efforts to build bridges continue. Philanthropy’s contribution could serve as a vital intermediary sector, provided it listens attentively and facilitates the necessary mediation, without requiring significant financial investment.

Summarization of our email of 16/05/2024 to C20 WG9

The author is concerned that the last WG9 meeting neglected to address autism or disabilities, highlighting that NGOs, philanthropic sectors, and governments often overlook autistic organizations. The author underscores the challenges autistic people face in communicating their needs and the lack of attention from policymakers. They argue that autistic individuals offer valuable insights into societal flaws but are frequently dismissed or misunderstood by authorities who view autism through a medical or defectological perspective.

The author compares autistic advocacy to wheelchair users needing accessible infrastructure, noting that accommodations are often simple and affordable. They stress the importance of understanding autism not as a defect but as a different way of perceiving the world, which can reveal societal issues. They call for intermediary support to bridge the communication gap between autistic people and policymakers, emphasizing that properly addressing autism can benefit everyone by improving mental health and reducing societal costs.

The author pleads for the philanthropic sector to support autistic advocacy, as this support is crucial for effective communication and societal improvement. They emphasize that if even the philanthropic sector does not help, then there is little hope for gaining the attention and support needed from governments and other organizations. They conclude by asking for the inclusion and consideration of autistic people in discussions and decisions, arguing that this inclusion would be beneficial for all.

There are additional items to be added later, including details about the meetings and the final revisions to the Working Group’s document.