Table of Contents
Reformulation of our recommendations to align with WG5 structure
(pasted in the WG shared documents on 02/05/2024)
Group 1 (Health System Strengthening)
Autistan priority 1 of 3 for WG 5 sub-group 1 (Health System Strengthening): Healthcare Specific to Autism Disorders and Comorbidities
I. Introduction – Context:
Autistic individuals often face unique healthcare needs stemming from autism spectrum disorder (ASD) and associated comorbidities. These needs encompass sensory sensitivities, communication differences, and co-occurring conditions like anxiety, depression, and gastrointestinal issues. However, accessing appropriate healthcare tailored to these needs is often challenging due to a lack of understanding and accommodation from healthcare providers.
II. Challenges:
The current challenges in healthcare access and services for autistic individuals include limited access to diagnostic evaluations and assessments for ASD, insufficient funding and resources for specialized therapies, lack of guidelines for autism-friendly assessments and examinations, limited collaboration among healthcare providers, educators, and caregivers, and inadequate training for healthcare providers to address common healthcare concerns and co-occurring conditions in autistic individuals.
III. Proposals and Recommendations to G20:
- Expand access to diagnostic evaluations and assessments for ASD by providing comprehensive screenings conducted by qualified healthcare professionals trained in recognizing the characteristics and challenges of autism.
- Increase funding and resources for specialized therapies and interventions tailored to the needs of autistic individuals.
- Implement guidelines and protocols for conducting autism-friendly assessments and examinations to ensure effective communication and engagement with autistic patients during medical appointments.
- Foster collaboration between healthcare providers, educators, and caregivers to develop personalized care plans addressing the unique needs and strengths of autistic individuals.
- Provide training and support for healthcare providers to recognize and address common healthcare concerns and co-occurring conditions in autistic individuals, including sensory sensitivities, anxiety, depression, and sleep disturbances.
These proposals aim to improve access to healthcare specific to autism disorders and comorbidities, addressing the diverse needs of autistic individuals and promoting their overall health and well-being. Through targeted interventions, increased awareness among healthcare providers, and collaboration across sectors, we can ensure that autistic individuals receive the specialized care and support necessary for their well-being.
Autistan priority 2 of 3 for WG 5 sub-group 1 (Health System Strengthening): Enhancing Access to General Healthcare for Autistic Individuals
I. Introduction – Context:
Autistic individuals not only have specific healthcare needs related to autism but also encounter significant barriers when attempting to access general healthcare services for unrelated health issues. These barriers often stem from a lack of understanding, accommodation, and accessibility in medical settings, leading to challenges in receiving timely and appropriate care.
II. Challenges:
The current challenges in accessing general healthcare services for autistic individuals include a lack of autism awareness among healthcare providers, insufficient autism-friendly environments in medical settings, a need for guidelines on conducting autism-friendly assessments and examinations, limited empowerment of autistic individuals and their families to advocate for their healthcare needs, and attitudinal barriers encountered by autistic individuals when seeking medical care.
III. Proposals and Recommendations to G20:
- Provide autism awareness training for healthcare providers to enhance their understanding of autism and its associated healthcare needs, including sensory sensitivities, communication differences, and co-occurring conditions.
- Implement strategies to create autism-friendly healthcare environments, such as sensory-friendly waiting areas, visual supports, and communication aids, to enhance the comfort and accessibility of medical settings for autistic individuals.
- Develop guidelines and protocols for healthcare providers on conducting autism-friendly assessments and examinations, ensuring respectful and equitable treatment for autistic individuals during medical appointments.
- Empower autistic individuals and their families to advocate for their healthcare needs and rights, including access to appropriate services, accommodations, and support from healthcare providers.
- Enhance healthcare provider awareness and sensitivity training on recognizing and addressing common healthcare concerns and co-occurring conditions in autistic individuals, emphasizing a patient-centered approach, active listening, and respect for the preferences and communication styles of autistic individuals.
These proposals aim to address the barriers to accessing general healthcare for autistic individuals by implementing targeted interventions, enhancing healthcare provider training, and fostering advocacy and empowerment among autistic individuals and their families. Through a comprehensive approach, we can create a more inclusive healthcare system that supports the overall health and well-being of autistic individuals.
Autistan priority 3 of 3 for WG 5 sub-group 1 (Health System Strengthening): Enhance Training and Awareness for Emergency Healthcare Providers on Autism-Inclusive Practices
I. Introduction – Context:
In emergency healthcare settings, autistic individuals encounter unique challenges stemming from sensory sensitivities, communication differences, and heightened stress levels. The misinterpretation of autistic behaviors as aggression or non-compliance can result in negative interactions and delays in receiving essential medical care. To ensure equitable access to emergency healthcare services, it is crucial to enhance training and awareness for emergency healthcare providers on autism-inclusive practices.
II. Challenges:
Autistic individuals face challenges in emergency healthcare settings, including the risk of misinterpretation of their behaviors, leading to delays in receiving appropriate medical care. Emergency healthcare providers may lack understanding of autism, resulting in inadequate responses to the specific needs of autistic patients during emergencies. Additionally, the absence of guidelines and protocols for accommodating autistic individuals in emergency healthcare settings further exacerbates these challenges.
III. Proposals and Recommendations to G20:
- Develop specialized training programs for emergency healthcare providers to increase their understanding of autism, focusing on common behavioral manifestations, sensory sensitivities, and communication strategies. Emphasize approaches that prioritize empathy, patience, and respect when interacting with autistic individuals, and provide practical strategies for de-escalating situations and effectively communicating during emergencies.
- Foster collaboration between emergency healthcare providers and autism advocacy organizations to develop guidelines and protocols for accommodating the needs of autistic individuals in emergency healthcare settings. Ensure that all staff members are equipped with the necessary knowledge and skills to provide compassionate and effective care to autistic patients in crisis situations.
These proposed actions aim to promote a more autism-inclusive approach in emergency healthcare settings, aiming to reduce misunderstandings, improve patient-provider interactions, and enhance the quality of care received by autistic individuals during emergencies.
Group 4 (Mental Health – Aging)
Autistan priority 1 of 2 for WG 5 sub-group 4 (Mental Health – Aging): Creating Autism-Friendly Societies to Promote Mental Health and Well-being, not only for Autistic People
I. Introduction – Context:
Autism, often misconstrued solely through its associated challenges, encompasses inherent strengths vital for societal growth. Distinguishing between autism and its challenges is pivotal for understanding its impact and potential contribution to societal well-being.
II. Challenges:
Autistic individuals encounter societal barriers and stigma that impede their full participation, affecting their mental health and overall well-being. Failure to recognize the diverse perspectives and strengths within the autistic community perpetuates exclusion and hinders societal progress.
III. Proposals and Recommendations:
- Promote education and awareness about autism to foster understanding and acceptance within families and society as a whole.
- Combat stigma and discrimination through advocacy and promotion of inclusive policies, benefiting not only autistic individuals but society at large.
- Implement training programs to create supportive environments for autistic individuals, enhancing societal empathy and understanding.
- Advocate for policies addressing the unique needs of autistic individuals, contributing to the overall well-being and inclusivity of society.
Investing in autism-friendly environments isn’t merely a matter of accommodation; it’s an opportunity to rectify societal shortcomings and cultivate a more compassionate and inclusive society for everyone. By embracing the diversity and strengths of autistic individuals, we pave the way for a more harmonious and equitable future for all.
Autistan priority 2 of 2 for WG 5 sub-group 4 (Mental Health – Aging): Prioritizing Societal Solutions Over Medical Research in Addressing Autism Challenges
I. Introduction – Context:
Recognizing and addressing the societal challenges faced by autistic individuals is crucial for creating an inclusive environment. These challenges, often referred to as autism disorders, stem from the lack of consideration of autism in various aspects of society. Understanding the nuanced needs of autistic individuals requires consulting them directly to create a supportive environment.
II. Challenges:
- Autistic individuals face socio-generated harm due to societal attitudes and structures that hinder their participation and well-being.
- Biomedical research into autism poses ethical dilemmas and risks perpetuating harmful practices, such as eugenics-like approaches.
III. Proposals and Recommendations:
- Involve autistic individuals in decision-making processes related to policies and programs aimed at addressing societal challenges.
- Advocate for the development and implementation of policies and programs that prioritize the well-being and inclusion of autistic individuals.
- Highlight the potential dangers of biomedical research into autism and redirect resources towards initiatives promoting acceptance, understanding, and accessibility within society.
By prioritizing societal solutions and advocating for the dignity and rights of autistic individuals, we can create a more inclusive and supportive environment that safeguards their well-being.
Autistan additional recommendation regarding the forced psychiatrisation of mentally different individuals
(sent by email and pasted in the WG shared document on 10/05/2024 and 12/05/2024)
It is imperative that States demonstrate humanity, dignity, intelligence, discernment, and respect for International Conventions regarding the situations they impose on mentally different individuals (especially autistics).
In particular, by:
1- Creating inclusive and welcoming societies for these individuals, which helps reduce discomfort, suffering, disorders, and crises, instead of merely “disabling” these individuals with medication without addressing the broader social issues at their root;
2- Attempting to understand these individuals (thanks to collaboration with their organizations) and accepting their differences, rather than viewing difference or “abnormality” as necessarily a deficiency or mental problem to be cured;
3- Consequently, ceasing to confine (or impose forced treatments on) these individuals based on mere suspicions of potential danger;
4- Allowing these individuals to defend themselves or be defended “for real” and not through mere masquerades of justice where ultimately the psychiatrist always has the final say, thanks to the “fear of the madmen” among the public;
5- Fully uncovering the hidden influence, interests, and lobbying relationships between the medical, pharmaceutical, and judicial sectors;
6- Allowing victims or survivors of unjustified detentions or medical treatments to access reparations.
Summarized
1- Fostering inclusive societies for mentally different individuals, reducing reliance on medication alone.
2- Embracing differences rather than pathologizing them.
3- Halting unwarranted confinement and forced treatments.
4- Ensuring fair defense, not skewed by psychiatric biases.
5- Exposing hidden ties between medical, pharmaceutical, and judicial sectors.
6- Providing reparations for unjust detentions or treatments.
Shorter reformulation of our recommendations
(sent by email and pasted in the WG shared documents on 11/05/2024)
Sub-Group 1 (Health System Strengthening)
Fostering Good Health Habits in order to promote Population Health and reduce Healthcare expenses
– Implement a holistic health approach, starting with the promotion of healthy nutritious diets through education, subsidies, and regulation, while also investing in infrastructure and incentives for regular exercise. Adequate sleep, stress management, hydration should be emphasized through awareness campaigns and support services. Discourage harmful substances.
Enhancing Access to General Healthcare for Autistic Individuals
– Integrate autism-specific accessibility strategies in healthcare, including awareness training, to prevent attitudinal barriers, sensory disturbances, and other socio-generated harm. Empower autistic individuals and families to advocate for their healthcare rights.
Enhance Training and Awareness for Emergency Healthcare Providers on Autism-Inclusive Practices
– Create tailored training programs for emergency healthcare providers, enhancing their comprehension of autism’s behavioral manifestations, sensory sensitivities, and effective communication strategies, with a focus on empathy, patience, and respect. Collaborate with autism advocacy organizations to establish guidelines and protocols for accommodating autistic individuals in emergencies, ensuring all staff possess the requisite skills to provide compassionate and effective care during crisis situations.
Sub-Group 4 (Mental Health – Aging)
Creating Autism-Friendly Societies to Promote Mental Health and Well-being, not only for Autistic People
– Promote autism education and awareness to foster understanding and acceptance, combating stigma through advocacy and inclusive policies. Implement training programs for supportive environments, enhancing empathy and understanding.
– Advocate for policies addressing autistic individuals’ unique needs, contributing to societal well-being and inclusivity, because investing in autism-friendly environments isn’t just accommodation; it’s a chance to rectify societal flaws and shortcomings and build a compassionate, inclusive future for all.
Prioritizing Societal Solutions Over Medical Research in Addressing Autism Challenges
– Prioritize acceptance, inclusion, and well-being of autistic individuals through policies and programs, shifting away from a medical, curative focus. Highlight risks of biomedical autism research and reallocate resources to initiatives promoting societal acceptance, understanding, and accessibility.
The usefulness of a holistic approach to autism for the mental health of society
(sent by email on 13/05/2024)
Autism, in addition to providing undeniable advantages in terms of avant-garde creativity and analysis and problem-solving, also possesses a misunderstood and very useful advantage: indeed, the heightened sensitivity of autistics to disharmonies, that is, to infringements on naturalness and therefore the proper order of things, can serve as a “revealer” of the defects, errors, and socio-generated inconsistencies, like a kind of Humanity’s alarm system.
This implies that the adaptations required by autistic individuals ultimately consist of correcting the flaws of the socio-administrative system.
When one understands these things, one also understands that it is useful for other vulnerable people (that is, victims of this system, made by the majority for the majority, and very poorly made, as the news of the day increasingly demonstrates), and that it is useful, ultimately, for all human beings, and even, consequently, for all living beings.
This is why it is very important to create policies, measures, standards, and accessibility guidelines related to autism, because not only would this alleviate the suffering of autistics and therefore reduce their disorders, but it would also be very beneficial for society as a whole.
This approach and these measures would help reduce mental discomfort and thus improve the mental health of autistics, but also the mental health of everyone, through a “general system correction.”
In other words, the best way to improve the mental health of society (which is clearly failing) is to improve the mental health of the elements that suffer the most from social flaws, that is, autistics, through the corrections that we can explain.
This can be read with the usual defectological perspective on autism (the one that believes autism is a “mental illness”) by remaining in prejudices and confusions and thinking it’s “delusional,” or it can be read in a more humble and attentive way, in order to start wondering if it could be lucid and true, and finally make the effort to consult autistic specialists (like us) who can explain and demonstrate all of this in detail (if the necessary attention and time are given).
There are additional items to be added later, including details about the meetings and the final revisions to the Working Group’s document.