Table of Contents

Our initial thoughts about ‘autism and philanthropy’

In the field of philanthropy and autism, we would like to explain certain things and emphasize certain points, which could help determine if there is a possibility, an intersection, or an interaction between the two (autism and philanthropy).

To do this, let’s try to summarize the general mechanisms that – in our opinion – largely explain the problems and difficulties of autistic people.

1. Lack of understanding of autism, which is due to the fact that autism is confused with autism spectrum disorders, and therefore the whole is necessarily seen as a negative thing to be eliminated.

2. This leads to the fact that autistic individuals who can explain autism are not really listened to, due to the automatic prejudice that they are considered sick or mentally deficient, so their words are listened to or heard politely but not seriously. As a result, people remain in the original misunderstanding (1), and it becomes a vicious circle.

3. From there, people consider autism to be a problem, without understanding that the problem is not autism itself, but the lack of understanding and adaptation on the part of non-autistic people (in other words, for autistic people, the problem is not autism but the socio-generated disruptions by the non-autistic social environment, as well as the rejections made by non-autistic individuals).

4. Consequently, autistic organizations (which are very rare because it is very difficult for autistic individuals to function collectively) are not listened to attentively by public authorities, and often they are completely ignored. This prevents these public authorities from gaining enough understanding of autism to design adequate public policies on autism. This is particularly absurd considering that, at the same time, these same public authorities are eagerly seeking solutions regarding autism. However, they only turn to non-autistic medical scientists, who cannot understand autism because of their “defectological” biases about autism and the original confusion or misunderstanding “1”.

5. Because of these errors, doctors and scientists advising public policymakers can only provide “solutions” that are not at all suitable and that cause suffering (for us, autistic individuals) and/or strongly violate human rights, equality, etc.

For example:
5.1. Exclusion on the grounds that we are “not normal” or “incapable” (when we are simply different from ordinary people);
5.2. Attempts to “correct”, “erase” or “remove” our autism, which is absurd since it is our nature, and autistic individuals should be able to receive sufficient education and learn non-autistic social rules, BUT without renouncing their autism, which has interesting and useful qualities (which are often unfortunately “buried” due to all the suffering and “self-withdrawal” resulting from the aforementioned socio-generated sensory and mental disturbances);
5.3. Medication (which mainly serves to “calm” us down because of crises and suffering, but all of this could be avoided by addressing things upstream, that is to say by eliminating the socio-generated disruptions and the resulting suffering and medications);
5.4. Overprotection, which stems from a legitimate parental and social reflex based on the “precautionary principle” because people have no idea what to do, but the problem is that this overprotection is one of the main obstacles that prevent autistic individuals from evolving favorably: on the contrary, autistic individuals need to have as many different and original experiences as possible in order to learn about life and society and to gain self-confidence;
5.5. Many bad habits and flawed principles instilled by the non-autistic system, such as the idea that “social recognition” would be the royal road to “unlocking” autistic individuals, which is absurd because there is a confusion between “social recognition” and “self-esteem”, insofar as the opinion of strangers about us, who generally do not understand us at all, is worthless, so it is illogical to give it value and base our own self-esteem on it (it is absurd and difficult for autistic individuals to do this because to do so they must play a role that is truly contrary to their functioning, but above all it is dangerous because sooner or later the house of cards collapses or the bubble bursts, and since autistic individuals take things very seriously, then it is depression or suicide);
5.6. And other problems, vices, and mistreatments (even unintentional) resulting from the mistaken idea that autism is “bad” and needs to be eliminated or corrected (all because of the original confusion 1 between autism and autism-related problems), including eugenic desires (i.e., aiming to “prevent autistic individuals from being born”).

6. Because public authorities do not listen to us enough or not at all, their decisions are inevitably wrong and do not allow us to move in the right direction, that of freedom and equality based on equality with others. Indeed, to achieve this, society and all its components must be accessible, which is not the case at all. Society is not accessible to autistic individuals because nothing (or almost nothing) is done in this direction. Nothing is done because there are no policies or accessibility standards for autistic disabilities.

This gap comes from two things:
6.1. The fact that it would not occur to most politicians (in many countries) to make efforts and implement measures to make life easier for a population (autistic individuals) they consider “sick” or as “a problem”, which rather encourages them to try to “eliminate autism” (scientifically or medically), or failing that, to “reformat autistic individuals to make them non-autistic”, which for them is “the solution”.
(To better understand, one can draw a parallel with the population of homosexuals: nowadays, in most countries, no one would think of “curing homosexuality”, and there are no policies of “reeducation” or things seeking to transform homosexuals into heterosexuals, or to force them to pretend to be heterosexual. But for autistic individuals, social and political reflexes, even in our time, aim to “correct” us.)
6.2. They simply have no idea about what accessibility for autism could be, and, worse, most of the time the mere idea of that does not even cross their minds. In rare cases, they tried to address the subject, but they gave up. If they were listening to us, they would understand what it is and how to implement that, but they don’t consider us seriously.

7. Incidentally, charitable or humanitarian organizations (including the philanthropy sector) seem to be in the same mindset, and every time we have asked them for help, they have told us that they deal with other areas but not autism. We have come to understand that organizations, governmental or non-governmental, dealing with autism, do so in a “medical and defectological” way, with a sense of superiority over autistic individuals (considered inherently defective), and it seems that this explains why when autistic organizations ask for help and want to defend autism as a natural human variation, it must seem “crazy” or surreal or incomprehensible, and therefore, given the prejudices in which almost everyone is steeped, the supposedly “crazy” nature of our requests or projects or concepts must simply be seen as proof or confirmation of the more or less “delirious” nature of autistic ideas.

8. In conclusion, there is a very deep misunderstanding, but there is also a vicious circle that prevents us from being heard with enough attention to eliminate this misunderstanding. (Sometimes people really listen to us, and then they understand, but this is very rare, and it does not happen in the public spheres we target, which are the most important because that’s where the “levers” are).

9. Therefore, regarding the field of “philanthropy”, it would be very useful for philanthropic organizations to help us break down these absurd and harmful barriers, to build bridges, to facilitate relations and communication with public policymakers. We also need some money, and we also need, above all, human and technical assistance (“corporate sponsorship”?), but money and “strength” are insufficient in the face of bureaucratic administrative systems that only superficially consider the issue of autism, referring only to “scientific” data, which are wrong, as we can demonstrate but we are not allowed to do so because it seems unbelievable.

10. Additional insights:

10.1. In other words, people look at autism through the wrong end of the telescope and say (obviously) that it doesn’t work.

10.2. Another analogy can be made with the concept of the “Flat Earth.” That is to say, for people who do not understand autism, autism is like a mysterious thing at the edges of the Flat Earth. In their world (where they do not venture too far, not far from “normality”), everything seems logical to them, and they believe that the Earth is flat, that their “normal” system is right (as before when people thought that the Earth was at the center of the universe, etc.). But when one is autistic and understands autism, non-autism, and the relationships between the two, it is as if one realizes that the Earth is not flat but spherical because one understands the logic of it all, there is no more mystery or “puzzle”, and one also understands very well that the idea that “normality = correctness” is false (obviously). Incidentally, one also understands how useful autism can be, in terms of creativity and problem-solving, and also as a revealer of social woes and “misadjustments”, which we easily detect thanks to our very great sensitivity to “violations of harmony”. The notion of harmony and coherence is central to autism, but obviously this idea makes the great autism specialists laugh, who (like doctors from “the planet of the apes”) think that we are incoherent and disturbed, whereas it is not that but the opposite, it is our great coherence and sensitivity that make us “resonate” like a crystal glass or like a bell, that is to say that we reflect or reveal or reflect the ambient disharmonies.

Our Insights about Philanthropy’s Role in Understanding Autism

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

In the realm of philanthropy and autism, we aim to elucidate specific aspects and underscore key elements that could shed light on potential connections, overlaps, or synergies between the two realms.

To accomplish this, let’s endeavor to outline the fundamental mechanisms that, in our view, predominantly underpin the challenges and obstacles faced by individuals on the autism spectrum.

1. Unraveling Misconceptions: Autism vs. Autism Spectrum Disorders

Inadequate comprehension of autism often stems from the conflation of autism with autism spectrum disorders (ASD), leading to a perception of autism as inherently negative and something to be eradicated. This misunderstanding perpetuates misconceptions and hampers efforts to support individuals across the spectrum effectively.

2. Overlooked Voices: The Perpetual Cycle of Misunderstanding Autism

This results in autistic individuals who possess the ability to articulate their experiences with autism being overlooked, often due to the preconceived bias that they are perceived as ill or intellectually deficient. Consequently, their insights are merely acknowledged politely rather than taken seriously. Consequently, the initial misunderstanding persists (as outlined in point 1), perpetuating a vicious cycle of miscomprehension.

3. Autism’s True Challenge: Non-Autistic Barriers

Consequently, autism is often perceived as a problem, overlooking the crucial distinction that the issue lies not with autism itself, but rather with the insufficient comprehension and adjustment on the part of non-autistic individuals. In essence, for autistic individuals, the core challenge does not stem from autism per se, but rather from the socio-generated disturbances within the non-autistic social environment, as well as the rejections experienced from non-autistic individuals.

4. Overlooked Voices: The Disregard for Autistic Organizations in Policy Making

As a result, autistic organizations—though scarce due to the inherent challenges faced by autistic individuals in collective functioning—are often not afforded attentive listening by public authorities and are frequently disregarded altogether. This lack of engagement hampers public authorities’ ability to cultivate a comprehensive understanding of autism necessary for crafting effective policies. The irony lies in the fact that while these public entities actively seek solutions for autism-related issues, they predominantly rely on non-autistic medical scientists, whose perspectives are often colored by “defectological” biases and are influenced by the original confusion or misunderstanding outlined in point 1.

5. Challenging Misconceptions: Consequences of Misguided Approaches to Autism

Due to these misconceptions, medical professionals and scientists advising public policymakers often propose “solutions” that are profoundly unsuitable and lead to suffering for autistic individuals, while also flagrantly violating human rights and principles of equality.

Here are some examples:

5.1. Exclusion: Autistic individuals are often excluded on the basis of being perceived as “abnormal” or “incapable,” despite simply possessing differences from neurotypical individuals.

5.2. Attempts to “Correct” Autism: Efforts to “correct,” “erase,” or “remove” autism overlook the fact that autism is an inherent aspect of an individual’s 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.