Objectives and competences for the module

Understand fundamental rights in the treatment process: Learn about the rights to be informed, to participate in decision-making, and to consent or refuse treatments.

Develop effective communication skills: Equip participants with the skills to communicate assertively and clearly. Promote communication among persons with autism, families and healthcare professionals.

Encourage informed and critical decision-making: Provide necessary tools to critically evaluate information about treatments and therapies.

Promote self-advocacy and active participation: Motivate individuals with autism and their families to be their own advocates and active participants in their treatment process. Motivate professionals to promote self-advocacy and active participation.

Navigate the healthcare system and support services: Teach how to identify and access available resources and services that can support the treatment process.

Module index

1. Patient and Family Rights

1.1 Respect for Dignity and Individual Rights
- 1.1.1 Individualised treatment: Recognise and respect the individual differences, preferences, and needs of people with autism.
- 1.1.2 Human rights: Ensure that all interventions and treatments respect the human rights and dignity of individuals with autism.
1.2 Nonmaleficence
- 1.2.1 Avoid harm: Avoid any intervention that could cause physical, psychological, or emotional harm.
- 1.2.2 Minimise risks: Ensure that the benefits of any intervention outweigh the potential risks.
1.3 Beneficence
- 1.3.1 Promote well-being: Actively work to promote the well-being and optimal development of individuals with autism.
- 1.3.2 Evidence-based interventions: Use interventions and practices that are backed by scientific research and have been proven effective.
1.4 Autonomy
- 1.4.1 Support for decision-making: Encourage and support the autonomy of individuals with autism, including their involvement in decisions regarding their treatments and interventions.
- 1.4.2 Informed consent: Ensure that individuals with autism, or their legal guardians when applicable, receive all necessary information to make informed decisions.
1.5 Justice
- 1.5.1 Equity in access to interventions: Work to ensure that all individuals with autism have equitable access to quality interventions and resources, regardless of their economic, geographic, or cultural situation.
- 1.5.2 Adaptation to individual needs: Adjust interventions to meet the unique needs of each individual, avoiding discrimination and promoting equal opportunities.
1.6 Confidentiality
- 1.6.1 Protect personal information: Maintain the confidentiality of all personal and clinical information of individuals with autism, sharing it only with explicit consent or when ethically or legally required.
1.7 Professionalism
- 1.7.1 Continuous professional development: Commit to continuous education and professional development to stay up-to-date with best practices and the latest research in the field of autism.
- 1.7.2 Self-assessment and reflection: Critically reflect on one’s own practice, seeking constant improvement and ethically responding to challenges.

2. Communication Skills with Healthcare Professionals

2.1 The importance of working as a team in collaboration with professionals.
2.2 Strategies for effective and assertive communication.
2.3 How to prepare for medical appointments and what questions to ask.
2.4 How to communicate preferences and concerns to professionals.
2.5 Handling disagreements and how to request second opinions.

3. Evidence-Based Interventions for Autism

3.1 Strategies for self-advocacy in the context of autism.
3.2 The role of individuals with autism and their families in the treatment team.
3.3 Creating personalised treatment plans.

4. Navigating the Healthcare System and Accessing Services

4.1 Guide to understanding the healthcare system and support services.
4.2 Planning for the transition for young adults with autism.

1. Patient and Family Rights

This chapter is dedicated to empowering individuals with autism and their families by helping them understand and assert their rights within the healthcare system. It aims to enable them to navigate the system effectively, communicate their needs clearly, make informed decisions about their care, and advocate for themselves throughout the treatment process. The chapter underscores the essential rights of patients and families in the context of autism interventions, emphasizing the importance of respect, safety, well-being, autonomy, justice, confidentiality, and professionalism.

Within this framework, it delves into the various dimensions of patient and family rights, encompassing aspects such as respect for dignity and individual rights, the principle of nonmaleficence to avoid harm, the promotion of beneficence to enhance well-being, the autonomy of individuals in decision-making processes, the pursuit of justice to ensure equitable access to interventions, the safeguarding of confidentiality, and the adherence to professional standards and ethics.

Additionally, it highlights the critical role of healthcare professionals in this process. By motivating and guiding individuals with autism and families, professionals can foster confidence and collaboration, ensuring that all parties are equipped to participate actively and meaningfully in their healthcare journey. This collaborative approach underscores the importance of professional responsibility, as practitioners not only deliver care but also act as trusted advisors and advocates for the individuals and families they serve.

By clarifying these essential rights and principles, the chapter enables individuals and families to participate in their healthcare journey confidently and proactively.

1.1 Respect for Dignity and Individual Rights

The basis of good healthcare is respecting dignity and individual rights. This is especially important for people with autism and their families, who face unique challenges and needs. People with autism often face insufficient access to healthcare, inadequate diagnostic and post-diagnostic support, and inefficiencies in intervention and treatment services due to a combination of factors. These include a lack of awareness and training among healthcare providers, diagnostic challenges, fragmented healthcare systems, and financial constraints. Additionally, social and communication barriers, long wait times for services, and limited availability of evidence-based interventions contribute to these issues. Addressing these challenges requires better training for healthcare professionals, increased public awareness, improved care coordination, enhanced insurance coverage, and more research into effective treatments.

The principles of the World Health Organization's QualityRights initiative (Funk & Bold, 2020) align closely with the need for respectful and effective healthcare for people with autism. QualityRights emphasises a human rights-based approach to mental health and disability care, aiming to eliminate discrimination while promoting dignity, autonomy, and inclusion. These principles highlight the importance of providing accessible, individualised healthcare and support services that respect the rights and preferences of people with autism and their families. Furthermore, QualityRights stresses the necessity of well-trained, compassionate healthcare professionals and systems that empower individuals to make informed decisions about their care. By adopting these principles, healthcare systems can begin to address the unique barriers faced by people with autism, fostering a more inclusive, respectful, and supportive approach to health that aligns with the fundamental right to the highest attainable standard of health.

1.1.1. Individualised treatment: Recognise and respect the individual differences, preferences, and needs of people with autism.

In recent years, autism diagnosis and treatment have advanced significantly, emphasising person-centred care. This includes identifying and diagnosing children at earlier ages and recognising previously undiagnosed cases in adults. These advancements reflect a growing awareness of the diverse ways autism manifests across the lifespan and the acknowledgment that each individual's needs and experiences are unique. Consequently, treatments and support strategies are increasingly tailored to personal strengths, preferences, and specific challenges, fostering a more inclusive and supportive approach to care.

Individualised treatment is essential in healthcare because autism affects each person differently. Acknowledging and respecting these differences involves developing customised healthcare plans tailored to a person's specific abilities, challenges, and preferences. This approach not only improves the effectiveness of the treatment but also enhances the quality of life for persons with autism and their families (Frye et al., 2022; Gulsrud & Renno, 2020). Additionally, early identification and diagnosis of children with autism allow health professionals to implement interventions that help improve their abilities throughout their lives (Giarelli & Gardner, 2012).

Some individuals with autism frequently face challenges in healthcare, such as difficulty using symptom scales, stress from long-recorded phone messages, and trouble verbalising symptoms, which can lead to being dismissed. They may have reduced awareness of bodily sensations until they are severe and may struggle with non-verbal communication that doesn't match their distress level. Sensory overload in medical settings can increase anxiety and communication issues, sometimes causing situational mutism. Diagnostic overshadowing is common, where symptoms are attributed to existing conditions and not fully investigated. Additionally, persons with autism may have complex medical conditions, making their healthcare needs more intimidating for both them and their providers (Doherty et al., 2022; Sehinson & Neff, 2024). In terms of habits, they often engage in health practices that may have long-term negative consequences, such as sedentary lifestyles or unbalanced nutrition. In this context, psychoeducation and training in healthy habits play a crucial role in preventing future risks and enhancing overall well-being.

In the healthcare setting, personalised care begins with a comprehensive assessment that identifies the specific needs of the person. For example, a healthcare provider might use a range of diagnostic tools to understand the person’s communication abilities, sensory challenges, and co-occurring conditions such as anxiety or gastrointestinal issues (Lord et al., 2020). Tailoring medical care to these needs can involve adjusting the speed and complexity of language to match the patient's level, as well as using specific communication methods—such as Augmentative and Alternative Communication (AAC) systems, including picture exchange communication systems (PECS) and speech-generating devices—to ensure the person can effectively express their needs and preferences (Nicolaidis et al., 2015). Additionally, healthcare environments can be adapted to be more sensory-friendly, with measures such as reduced noise levels, dimmer lighting, and less crowded waiting areas, which help minimise sensory overload and anxiety for people with autism (National Development for Inclusion, 2020; Simpson, 2020).

Customised therapeutic strategies are also a key component of individualised treatment in healthcare. Speech, occupational, and behavioural therapies should be tailored to fit each individual's needs. For instance, speech therapy might focus on developing alternative communication methods if verbal communication is challenging. Occupational therapy can be adapted to address specific sensory processing issues or to improve fine motor skills necessary for daily living activities. Behavioural therapies should be personalised to target behaviours and skills that are most relevant to the individual's daily life and overall well-being.

Moreover, healthcare providers need to collaborate closely with families to create and implement these individualised plans. Family members can provide valuable insights into the person’s daily routines, preferences, and responses to different treatments, which can inform a more effective and holistic care plan. This collaborative approach ensures that interventions are not only clinically effective but also aligned with the person’s and family’s goals and values (Karst & Van Hecke, 2012).

The importance of early intervention cannot be overstated. Early diagnosis and treatment of autism enable healthcare providers to implement interventions that can significantly improve the functional capacity of individuals with autism throughout their lives. Early intervention programs often include a combination of therapies tailored to address the unique developmental needs of young children with autism, which can lead to better long-term outcomes (Franz et al., 2022; Hadders-Algra, 2021).

By focusing on individualised treatment, healthcare providers can offer more effective and respectful care for individuals with autism. This approach embraces the principles of neurodiversity, acknowledging and valuing the unique ways in which individuals experience and interact with the world. It also recognises the wide spectrum of cognitive and functional abilities within the autistic community, ensuring that support is tailored to meet each person’s specific needs. Moreover, it prioritises respecting personal preferences, interests, and life goals, fostering a sense of autonomy and dignity. By addressing these aspects holistically, healthcare professionals not only help manage the symptoms of autism but also empower individuals to achieve their full potential, participate meaningfully in society, and enhance their overall quality of life. This inclusive and person-centred care ultimately contributes to building a more supportive and understanding healthcare system.

1.1.2. Human rights: Ensure that all interventions and treatments respect the human rights and dignity of individuals with autism.

The United Nations has urged recognition of the rights of people with autism. Emphasising equal opportunities and awareness, the UN calls for support in health, education, employment, and financial management. Early intervention and support services are essential for their autonomy and human rights, and addressing stigmatisation and discrimination is crucial (United Nations, 2017).

Human rights for individuals with autism include ensuring that they receive fair and respectful treatment in all aspects of life. This involves providing access to appropriate healthcare, educational opportunities tailored to their needs, and employment support that respects their abilities and potential.

Early intervention services, such as speech therapy, occupational therapy, and behavioural support, are critical in helping individuals with autism develop essential skills and improve their quality of life. These services not only promote their autonomy but also ensure that their human rights are upheld by giving them the tools they need to navigate society effectively.

Addressing stigmatisation and discrimination is another vital component. Societal attitudes towards autism must shift to foster acceptance and inclusion. This involves public awareness campaigns, education on autism for both the public and professionals, and policies that protect the rights of individuals with autism. These principles should guide healthcare providers in delivering ethical and respectful care to individuals with autism, ensuring their human rights are protected in all medical and therapeutic interventions.

The four ethical principles by Beauchamp and Childress—autonomy, non-maleficence, beneficence, and justice—are highly influential in medical ethics and are essential for understanding the current approach to ethics in autism healthcare (Beauchamp & Childress, 2019; Page, 2012).

1.2 Nonmaleficence

Nonmaleficence is the obligation to avoid harming others or, if avoidance is impossible, to take a course of action that minimises harm (Beauchamp & Childress, 2012). This ethical principle is central to medical practice and ensures that healthcare providers prioritise the well-being of their patients in all decisions and actions.

1.2.1. Avoid harm: Avoid any intervention that could cause physical, psychological, or emotional harm.

Nonmaleficence involves avoiding harm, alleviating suffering, or eliminating harm. Harm can take many forms, such as violating an individual's rights, causing offence, incapacitating someone, inflicting pain or suffering, or causing death. Treatment decisions often require weighing short-term harm against long-term benefits (Beauchamp & Childress, 2019; Giarelli & Gardner, 2012). Healthcare providers have a responsibility to promote the well-being of their patients, which means they should avoid any intervention that could cause physical, psychological, or emotional harm whenever possible. They must be vigilant in assessing the potential negative impacts of their treatments or interventions and should refrain from actions or recommendations that could lead to these types of harm, ensuring that patient safety and well-being are at the forefront of care (Brodhead et al., 2022).

When interventions fall outside established guidelines or lack scientific backing, they present inherent risks. Without proper validation, these approaches may lead to unintended consequences, such as worsening symptoms, creating new health complications, or undermining trust in evidence-based treatments. Additionally, interventions without professional endorsement might offer false hope, leading individuals and families to invest time, effort, and resources into methods that may ultimately prove ineffective or even harmful. It is crucial to prioritise evidence-based practices to ensure the safety, well-being, and effective support of those receiving care.

1.2.2. Minimise risks: Ensure that the benefits of any intervention outweigh the potential risks.

Minimising risks means ensuring that the benefits of any treatment are greater than the potential dangers. Sometimes, short-term harm can lead to long-term benefits. For example, the use of chemotherapy to shrink a tumour might cause unpleasant side effects initially but can help achieve long-term remission and survival. Healthcare providers must carefully consider the risks and benefits of their treatment recommendations, using evidence-based practices to guide their decisions and avoiding experimental or unproven methods that could endanger patients (Brodhead et al., 2022; Giarelli & Gardner, 2012).

When it comes to autism treatments, this principle is especially important. Evidence-based practices are crucial for ensuring that interventions are both effective and safe. Treatments such as speech therapy and occupational therapy have been widely researched and shown to provide significant benefits to individuals with autism. These interventions aim to improve communication skills, social interactions, and daily living skills, thereby enhancing the overall quality of life (Gulsrud & Renno, 2020).

Healthcare providers must balance immediate harm against future benefits with a thorough analysis of the potential outcomes and make decisions that favour the patient's best interests. This involves selecting treatments that have the highest likelihood of success with the least amount of potential harm. Providers should avoid experimental or unproven methods that could pose risks to patients. For instance, some alternative treatments for autism, such as chelation therapy or hyperbaric oxygen therapy, lack strong scientific support and can be harmful.

Providers must use evidence-based practices to guide their decisions, ensuring that each intervention is backed by solid research and proven efficacy. This approach not only minimises risks but also maximises the potential for positive outcomes. By adhering to this principle, healthcare providers protect the rights and well-being of their patients while promoting the highest standards of care to ensure that treatments are both ethical and effective.

1.3 Beneficence

The ethical principle of beneficence requires acting in the best interest of the patients to improve their quality of life. This involves saving lives when possible, discontinuing unnecessary or ineffective treatments, and alleviating suffering, especially when a cure is not possible (Beauchamp & Childress, 2019; Giarelli & Gardner, 2012). In the context of autism treatment, this principle takes on several important dimensions, reflecting the commitment of healthcare providers to enhance the well-being of individuals with autism. Beneficence involves not only providing effective treatments but also ensuring that these treatments are applied in a way that respects the person’s dignity and considers their long-term needs.

1.3.1. Promote well-being: Actively work to promote the well-being and optimal development of individuals with autism.

To fulfil the principle of beneficence, healthcare providers must actively work to promote the well-being and optimal development of individuals with autism. This means designing and implementing treatment plans that support the individual's growth and address their unique needs. For instance, therapies should be aimed at improving social skills, communication abilities, and adaptive behaviours, which are crucial for the individual's personal development and quality of life. Promoting well-being involves a holistic approach that goes beyond immediate symptoms to consider the overall development of the individual. This includes:

Individualised Treatment Plans: Developing personalised treatment plans that reflect the unique strengths, challenges, and preferences of the individual with autism. This approach respects the individual’s personal goals and family values, rather than imposing a one-size-fits-all solution.
Supporting Emotional and Psychological Growth: Providing interventions that support not only the cognitive and behavioural aspects of autism but also address emotional and psychological well-being. For example, therapy might include elements of emotional regulation, self-esteem building, and stress management.
Family-Centred Approaches: Engaging with families to ensure that the treatment plan aligns with their understanding of autism and their expectations for the future.

Sometimes, treatments for autism are narrowly focused on eliminating a disruptive behaviour or an undesirable trait without considering the person as a whole. This approach can overlook the broader context of the individual's life, such as their strengths, interests, and long-term well-being. It's important to remember that every behaviour, even if challenging, may have a functional purpose for the individual. A truly effective treatment should not merely aim to suppress behaviours deemed problematic by others, but should also foster personal growth, autonomy, and a positive quality of life for the person with autism.

1.3.2. Evidence-based interventions: Use interventions and practices that are backed by scientific research and have been proven effective.

As stated in the previous point, using evidence-based interventions is key to delivering effective and well-supported care for individuals with autism. Beneficence in autism treatment also requires that interventions and practices are based on scientific research and have demonstrated effectiveness.
Implementing evidence-based interventions involves:

Selecting Proven Methods: Using treatments that are backed by empirical research and validated through clinical trials is essential for effectively managing autism symptoms and fostering skill development.
Staying Updated with Research: Continuously reviewing and integrating the latest research findings into treatment practices. This means that healthcare providers should stay informed about advancements in autism research and adapt their methods based on new evidence.
Monitoring and Evaluating Outcomes: Regularly assessing the effectiveness of interventions through systematic evaluation methods. This includes setting measurable goals, tracking progress, and adjusting treatment strategies as necessary to ensure that the interventions remain beneficial for the person with autism.

Ultimately, a commitment to beneficence ensures that treatment approaches are both effective and compassionate, guiding healthcare providers in delivering care that truly supports the well-being of individuals with autism and their families. It is important to note that, at its extreme, beneficence can lead to paternalism, where healthcare providers assume they know what is best for the patient without fully considering the person’s or family’s wishes. While the intention behind paternalism is to ensure the patient's well-being, it can lead to a power imbalance where decisions are imposed rather than shared (Beauchamp & Childress, 2019; Giarelli & Gardner, 2012). To avoid paternalism, the principle of beneficence must be balanced with the following principle of autonomy.

1.4 Autonomy

Autonomy emphasises respecting the individual's right to make their own decisions about their healthcare, which is a fundamental aspect of ethical medical practice. Medical staff must respect, support, and help patients with their choices (Beauchamp & Childress, 2019; Giarelli & Gardner, 2012).

1.4.1. Support for decision-making: Encourage and support the autonomy of individuals with autism, including their involvement in decisions regarding their treatments and interventions.

- Engage in Shared Decision-Making: This approach involves working collaboratively with patients and their families to make treatment decisions. It recognises that individuals with autism and their families have valuable insights into their own needs and preferences. Shared decision-making ensures that treatment plans are not just imposed but developed through a dialogue that respects the patient’s and family’s perspectives. For example, this might involve discussing various treatment options, exploring the potential benefits and risks of each, and considering the patient’s personal goals and values.
- Respect Autonomy: Healthcare providers must respect the rights of patients and their families to make informed decisions about treatment options. This entails offering transparent and unbiased information regarding the benefits, risks, and alternatives of various interventions. Providers should ensure that information is accessible and comprehensible to individuals with autism and their families by breaking down complex concepts into simpler terms and verifying understanding. Additionally, they should use visual aids or interactive tools to clearly explain treatment options and their implications.
- Empower Patients and Families: Empowerment involves providing the tools and support needed for informed choices, which includes offering resources like educational materials and access to support services. By doing so, healthcare providers help patients and their families become active participants in their care, fostering a sense of agency and confidence in their decision-making. This empowerment is further enhanced by facilitating family meetings where treatment options can be discussed together, offering professional counselling to help patients and families explore their feelings and preferences regarding treatment choices, and creating an open environment where patients and families feel comfortable asking questions and expressing concerns about their treatment options.

1.4.2. Informed consent: Ensure that individuals with autism, or their legal guardians when applicable, receive all necessary information to make informed decisions.

Informed consent is a crucial aspect of respecting autonomy and involves more than just obtaining a signature on a consent form. It is an ongoing process that ensures individuals with autism, or their legal guardians when applicable, are fully informed and able to make autonomous decisions about their care.

Key Elements of Informed Consent

- Providing Comprehensive Information: Healthcare providers must offer complete and understandable information about the proposed treatments. This includes explaining the purpose of the treatment, potential risks and benefits, possible side effects, and alternative options.
- Ensuring Understanding: It is not enough for patients or guardians to receive information; they must also understand it. Providers should assess understanding by asking questions and discussing the information, ensuring that the patient or guardian has a clear grasp of what the treatment involves.
- Voluntary Decision-Making: The decision to consent must be made voluntarily, without undue pressure or coercion. Patients and guardians should feel free to make choices based on their own values and preferences, without being influenced by external pressures.
- Ongoing Process: Informed consent is not a one-time event but an ongoing dialogue. Providers should check in with persons with autism and their families throughout the course of treatment to ensure that consent remains informed as new information arises or as treatment plans evolve.

1.5 Justice

In the context of autism treatments, justice ensures fairness in the distribution of resources and care. It implies that healthcare benefits and costs should be equitably shared among all individuals, regardless of economic, geographic, or cultural differences. Practical decisions must be made to ensure that interventions are accessible to everyone and tailored to meet the unique needs of each person, promoting equal opportunities for effective treatment and success (Brodhead et al., 2022).

1.5.1. Equity in access to interventions: Work to ensure that all individuals with autism have equitable access to quality interventions and resources, regardless of their economic, geographic, or cultural situation.

Ensuring equitable access to interventions is fundamental in the treatment of autism and aligns with the principle of justice in healthcare. Justice requires that the benefits and costs of healthcare resources are distributed fairly among all individuals, overcoming various barriers that may prevent equitable access to autism interventions:

- Economic Barriers: Many families face significant financial challenges in accessing autism interventions, as specialised therapies can be expensive and not always covered by insurance. To address this, healthcare systems and policymakers must work to provide financial support, such as subsidies, grants, or sliding scale fees, to ensure that low-income families can afford necessary treatments. Additionally, insurance policies should be advocated for and designed to cover a wide range of autism-related services comprehensively.
- Geographic Barriers: Access to quality autism interventions can be limited by geographic location, particularly in rural or underserved areas. Telehealth services have become a vital tool in overcoming these barriers by allowing families to access specialists and therapies remotely. Investments in telehealth infrastructure and training for providers can help bridge the gap. Furthermore, outreach programs can bring services directly to remote communities, ensuring that all individuals have access to the care they need.
- Cultural Barriers: Cultural differences can affect the accessibility and effectiveness of autism interventions. It's important for healthcare providers to offer culturally sensitive care that respects and incorporates the values, beliefs, and languages of diverse populations. This can be achieved through cultural competency training for healthcare professionals and the inclusion of community representatives in the development of intervention programs. Additionally, educational materials and resources should be available in multiple languages and tailored to meet the cultural needs of different communities.

1.5.2. Adaptation to individual needs: Adjust interventions to meet the unique needs of each individual, avoiding discrimination and promoting equal opportunities.

The principle of justice in autism treatment also necessitates adapting interventions to meet the unique needs of each individual. This individualised approach ensures that interventions are fair and effective for everyone, avoiding discrimination and promoting equal opportunities for success.

- Personalised Approach: Autism manifests differently in each individual, with a wide range of abilities and challenges. Therefore, a personalised approach to intervention is essential. This means conducting thorough assessments to understand the specific strengths, needs, and preferences of each person with autism. Personalised intervention plans should be developed in collaboration with the individual and their family, ensuring that their goals and aspirations are central to the treatment process.
- Flexible and Responsive Interventions: Interventions should be flexible and capable of adapting to the evolving needs of the individual. As a person's needs and abilities change over time, the intervention strategies should be adjusted accordingly. This requires ongoing monitoring and evaluation to ensure that the interventions remain relevant and effective. Regular feedback from the individual and their family is crucial in making necessary adjustments.
- Avoiding Discrimination: It's important to design interventions that do not inadvertently discriminate against certain individuals. This means ensuring that all individuals, regardless of their abilities, have access to the same quality of care and opportunities. For example, non-verbal individuals should have access to alternative communication methods such as sign language or augmentative and alternative communication (AAC) devices. Interventions should be inclusive and consider the full spectrum of autism, ensuring that everyone has the opportunity to benefit.
- Promoting Equal Opportunities: Adapting interventions to meet individual needs helps promote equal opportunities for success. This includes providing additional support or resources as needed to help individuals achieve their goals. For instance, in educational settings, accommodations such as extended time on tests, sensory breaks, or modified assignments can help students with autism succeed academically. In the workplace, reasonable accommodations can enable adults with autism to thrive in their careers.

By focusing on equity in access to interventions and adapting to individual needs, we can uphold the principle of justice in autism treatment, ensuring that all individuals receive fair and effective care.

1.6 Confidentiality

Confidentiality is fundamental in the healthcare professional-patient relationship, especially when dealing with sensitive conditions like autism. Protecting the privacy of individuals with autism and their families fosters trust, encourages honest communication, and ensures that personal and sensitive information is fully disclosed, which is crucial for effective diagnosis and treatment.

1.6.1. Protect personal information: Maintain the confidentiality of all personal and clinical information of individuals with autism, sharing it only with explicit consent or when ethically or legally required.

It is essential to maintain the confidentiality of all personal and clinical information of individuals with autism. This information should only be shared with explicit consent from the individual or their guardians, or when it is ethically or legally required. This practice safeguards the privacy and rights of the individuals and their families. However, there are situations where breaching confidentiality might be ethically permissible, and in certain circumstances, confidentiality may be breached. These include situations where the individual poses a specific and significant threat to the health or safety of others, where legal obligations require the disclosure of information (such as in cases of abuse), and where the public welfare is at risk, necessitating the sharing of information to protect the community (Beauchamp & Childress, 2019). Any consideration of breaching confidentiality should be approached with caution and after thorough evaluation. In the context of autism treatment, it is important to seek consent from the person or their legal guardians whenever possible. Disclosure should be limited to the minimum information necessary to achieve the ethical objective, ensuring that the patient's privacy is respected to the greatest extent possible.

1.7 Professionalism

Professionalism is a cornerstone in providing high-quality services in the field of autism. Within this domain, the commitment to continuous professional development and self-assessment is crucial to ensure that professionals remain updated with best practices and the latest research advancements.

1.7.1. Continuous professional development: Commit to continuous education and professional development to stay up-to-date with best practices and the latest research in the field of autism.

Continuous professional development is an ongoing process of learning and improvement that enables healthcare professionals to enhance their skills, knowledge, and competencies. In the context of autism, this process is vital due to the rapidly evolving nature of research and treatment methodologies.

Key aspects of continuous professional development include:

1. Engagement with Latest Research: healthcare professionals must stay informed about the latest studies, clinical trials, and meta-analyses that shed light on effective interventions for autism. This includes reading peer-reviewed journals, attending conferences, and participating in webinars.
2. Advanced Training and Certifications: Health care professionals must pursue additional certifications and training programs that focus on specific evidence-based practices, such as Applied Behavior Analysis (ABA), Speech Therapy, Occupational Therapy, and Social Skills Training, to enhance their expertise and provide more comprehensive and effective care for their patients.
3. Interdisciplinary Collaboration: Health care providers should work alongside professionals from various disciplines to achieve a comprehensive understanding of autism treatment. Such collaboration encourages a multidisciplinary approach to care, drawing on knowledge from psychology, education, medicine, and other relevant areas.
4. Technology and Innovation: Health care professionals should embrace new technologies and digital tools that can enhance treatment delivery and patient engagement. This may include communication devices, telehealth platforms, software for behaviour tracking, and virtual reality tools for social skills practice.

Thus, stakeholders should work together to improve healthcare services by understanding the needs of underserved populations, enhancing autism care training, increasing autism awareness, promoting research and tools for diagnosis and treatment, addressing needs in low-resource countries, and conducting long-term studies on autism impacts and healthcare access solutions (Malik-Soni et al., 2022).

1.7.2. Self-assessment and reflection: Critically reflect on one’s own practice, seeking constant improvement and ethically responding to challenges.

Self-assessment and reflection are critical for continuous professional improvement and ethical practice. They involve a thoughtful analysis of one’s own work, identifying areas of strength and areas needing enhancement (Schön, 2017). For professionals working with individuals with autism, this process includes:

1. Critical Reflection on Practice: Health professionals must regularly evaluate their own interventions and strategies to determine their effectiveness. This might involve reviewing session notes, seeking feedback from colleagues, and analysing client outcomes.
2. Ethical Responsiveness and Professional Integrity: Health professionals must address challenges and ethical dilemmas in practice promptly and appropriately. This includes maintaining confidentiality, obtaining informed consent, and ensuring that all recommendations and interventions are made with the patient’s best interest at heart, avoiding conflicts of interest or external pressures that might compromise the quality of care.
3. Professional Feedback: Seeking feedback from peers, supervisors, and clients to gain diverse perspectives on one’s practice. Constructive feedback can highlight blind spots and provide actionable insights for improvement.
4. Personal Development Plans: Creating and following a personal development plan that outlines specific goals, required resources, and timelines for achieving professional growth. This plan should be revisited and updated regularly to reflect progress and changing needs.

Studies show that people with autism often face health disparities and significant barriers to accessing healthcare (Folch et al., 2019). By committing to continuous professional development and engaging in regular self-assessment and reflection, professionals can ensure they provide the highest quality care to individuals with autism. This commitment not only enhances professional competence but also contributes to better outcomes for clients, fostering a supportive and effective therapeutic environment.

2. Communication Skills with Healthcare Professionals

This chapter focuses on improving communication between individuals with autism and healthcare professionals, highlighting the importance of teamwork, effective communication strategies, and proactive preparation for medical appointments. It explores the nuances of expressing preferences and concerns while managing potential disagreements that may arise during treatment. Through practical advice, it equips individuals with autism and families with tools to foster productive collaboration with healthcare providers. From developing assertive communication skills to thoroughly preparing for medical visits and asking relevant questions, the chapter offers a comprehensive guide for navigating healthcare interactions. By promoting mutual respect and understanding, it empowers individuals with autism and families to confidently assert their needs and preferences, ensuring their voices are heard and respected within healthcare settings. Ultimately, the chapter serves as a guide to help individuals with autism and families actively advocate for their rights and preferences throughout their healthcare journey.

2.1 The importance of working as a team in collaboration with professionals.

Effective healthcare for individuals with autism depends on teamwork between patients, their supporters, and healthcare professionals. Autism presents unique challenges in healthcare settings, including communication difficulties, sensory sensitivities, and organisational struggles, all of which require tailored approaches. Successful healthcare interactions rely on the capacity of both healthcare providers and the system to accommodate these needs. This section explores how collaboration between patients, supporters, and healthcare professionals—along with system-level improvements—can enhance healthcare experiences for individuals with autism.

Factors Impacting Healthcare Interactions
Participants in a study (Nicolaidis et al., 2015) identified several autism-specific factors that impact healthcare interactions. These include:

1. Communication challenges: Many people with autism face challenges in verbal communication, which can make healthcare visits particularly stressful. Providers who are not familiar with autism may struggle to adjust their communication style, which can lead to misunderstandings and ineffective care.
2. Sensory sensitivities: Sensory overload from bright lights, strong smells, or busy waiting rooms can cause significant distress for individuals with autism, making healthcare visits overwhelming.
3. Organisational difficulties: Persons with autism may have challenges with planning and organising, which can make it difficult to navigate the complexities of healthcare systems, including scheduling appointments, following treatment plans, and understanding medical instructions.

Role of Providers and Supporters
Healthcare professionals play a central role in facilitating effective interactions. Providers who have a strong understanding of autism and are willing to use accessible communication methods, such as simplified language, visual aids, or written communication, greatly enhance patient autonomy and satisfaction (Nicolaidis et al., 2015). However, there is often a gap in provider knowledge and skills, with many healthcare professionals not receiving sufficient training in autism-specific care (Corden et al., 2022; Morris et al., 2019; Zerbo et al., 2015). Providers’ reluctance to use written communication or accessible language may undermine patient autonomy, leading to frustration and dissatisfaction among individuals with autism (Malik-Soni et al., 2022). In contrast, those who involve patient supporters—such as family members, caregivers, or advocates—see improved patient outcomes. Supporters help bridge communication gaps, assist with organising healthcare information, and can advocate for the patient’s needs when necessary.

A study (Unigwe et al., 2017) emphasised the need for healthcare providers to assume competence in adults with autism, respect their communication needs, and recognise the diverse ways autism manifests in different individuals. Involving supporters in healthcare interactions is essential, as it ensures that the patient’s needs are met and that healthcare decisions are well-informed. A recent systematic review highlighted that the effectiveness of treatments can be influenced by the differing perspectives on healthcare held by individuals with autism and their caregivers (Walsh et al., 2020). For instance, healthcare professionals identified the use of complementary and alternative medicine and scepticism towards vaccines as challenges in providing effective care for people with autism. Conversely, caregivers expressed a need for healthcare providers to be more open to discussing and considering alternative approaches to autism treatment.

System-Level Barriers
Beyond individual interactions, systemic barriers play a significant role in limiting access to quality healthcare for individuals with autism (Doherty et al., 2022; Nicolaidis et al., 2015). Complex healthcare systems, long waiting times, and bureaucratic hurdles can be overwhelming for those with autism and their families. Inadequate formal support, such as limited access to autism specialists or appropriate healthcare accommodations, exacerbates these challenges. Additionally, stigma and discrimination against individuals with autism create further barriers to equitable care.

Empowering Patients and Reducing Discrimination Efforts to improve healthcare for individuals with autism must focus on empowering patients and training healthcare providers. Empowerment involves giving individuals with autism the tools and resources to advocate for themselves, navigate healthcare systems, and follow through on medical recommendations. This can include providing resources like healthcare navigation aids, preparation tools for medical visits, and credible medical information to guide decision-making. (Nicolaidis et al., 2015) found that participants wanted healthcare providers to be more aware of their specific needs and provide personalised accommodations. This can be achieved by incorporating patient-provided information about accommodation preferences into healthcare settings, ensuring that care is tailored to each individual. This level of personalization is critical in reducing healthcare disparities and improving overall satisfaction. Healthcare provider training is essential in closing the gap between patient needs and the care they receive. Training programs should focus on building awareness and understanding of autism, teaching providers the skills necessary to communicate effectively with patients who have communication difficulties and emphasising the importance of involving supporters in healthcare decisions. By equipping healthcare professionals with the knowledge and tools to provide patient-centred care, healthcare systems can better meet the needs of individuals with autism and improve health outcomes.

Additionally, reducing stigma and discrimination against individuals with autism is crucial for promoting healthcare equity. Stigma often manifests in the form of provider biases, low expectations for individuals’ abilities, and a lack of respect for their autonomy. To address this, society and healthcare systems must prioritise autism awareness, advocacy, and policy changes that ensure fair treatment for all individuals (Turnock et al., 2022). Policymakers should implement strategies to reduce healthcare inequities and increase formal support services, such as autism-specific healthcare programs and resources (Nicolaidis et al., 2015).

In conclusion, collaboration between healthcare providers, patients, and supporters is essential for improving healthcare outcomes for individuals with autism. Addressing communication challenges, sensory sensitivities, and organisational difficulties through personalised accommodations can create more inclusive care. System-level changes, such as reducing inequities, improving support services, and combating stigma, are also vital. Empowering patients, training providers, and enhancing system accessibility are key steps in improving healthcare experiences for persons with autism.

2.2 Strategies for effective and assertive communication.

Effective and assertive communication is crucial for individuals with autism and their families when interacting with healthcare professionals. Autism often presents unique communication challenges, including difficulties with verbal expression, understanding non-verbal cues, and sensory sensitivities that may complicate interactions. Given these complexities, developing communication strategies based on evidence-based practices is essential to improving healthcare outcomes. This chapter focuses on specific, research-supported strategies that individuals with autism and their families can use to enhance communication in healthcare settings.

Understanding the Barriers to Communication
Before delving into strategies, it is important to recognise the barriers that individuals with autism may face in communication. Many autistic individuals process information differently, which can lead to misunderstandings or anxiety during healthcare interactions. Some individuals with autism may struggle to communicate their needs effectively, especially in high-stress environments such as medical appointments.

Communication difficulties can manifest in several ways, including (Nicolaidis et al., 2015):

Sensory overload: Loud noises, bright lights, and busy environments can overwhelm an autistic person’s sensory system, making it harder to focus and communicate.
Verbal communication challenges: Many autistic individuals experience difficulties with language, including finding the right words, understanding complex language, or keeping up with fast-paced conversations.
Non-verbal communication difficulties: Some autistic individuals may not use or recognise typical non-verbal communication cues like facial expressions, eye contact, or gestures, which are often relied upon in healthcare settings.

Strategies for Effective and assertive Communication

1. Preparation Before Appointments
Preparation is one of the most effective strategies for improving communication during healthcare appointments. Using social stories, visual aids, or written lists of questions will help the individual anticipate what will happen during the visit. By preparing ahead of time, both the patient and family can focus on the key issues they want to discuss and ensure that important information is not forgotten.

Social stories: These are short, personalised narratives that explain healthcare visits in a clear and simple way. Social stories can be tailored to describe the sequence of events during a medical appointment, helping individuals with autism understand what to expect.
Visual aids: These tools like pictures, symbols, schedules, or videos that help outline what will happen during the visit. Visual aids can include step-by-step support showing each part of the appointment, from entering the clinic to meeting the doctor, making it easier for the person to understand and anticipate the process. Visual aids reduce anxiety by providing clarity, allowing the individual to feel more comfortable and prepared for the experience.
Question lists: Writing down key questions or concerns before an appointment can help focus the conversation and ensure that important topics are addressed.
Practice sessions: Role-playing an appointment at home with a family member or supporter can help familiarise the autistic individual with common healthcare interactions and reduce anxiety.

2. Using Alternative Communication Methods
For individuals who struggle with verbal communication, alternative communication methods can be invaluable. Research has shown that augmentative and alternative communication (AAC) tools, such as communication boards or apps, can help autistic individuals express their needs more effectively (Donaldson et al., 2021; White et al., 2021). Healthcare providers should be made aware of these tools in advance so they can incorporate them into the appointment.

Communication boards: These are visual aids that allow individuals to point to images or words to communicate their needs. They can be customised to include specific medical terms or concerns.
Assistive technology: AAC devices or apps, such as tablets with text-to-speech functions, can help bridge communication gaps during appointments. These tools allow individuals to type or select responses, which are then converted into speech.

3. Clear and Structured Communication
Many individuals with autism benefit from structured and clear communication. Healthcare providers can make interactions more accessible by breaking down complex medical information into simple, concise steps. However, it is also important for autistic individuals and their families to advocate for this type of communication. Research by Nicolaidis et al. (2015) found that patients who explicitly requested simplified language and clear instructions during medical visits were more likely to experience positive healthcare interactions.

Advocating for clear communication: Families and patients should feel empowered to ask healthcare providers to use simple language, avoid medical jargon, and explain procedures or treatments step-by-step.
Repeating and summarising information: Requesting that the healthcare provider repeat and summarise important information can help ensure that both the patient and their family understand the medical recommendations and next steps.

4. Being Assertive and Practising Advocacy
Assertive communication is key to ensuring that the needs and preferences of individuals with autism are respected in healthcare settings. Assertiveness involves clearly and respectfully expressing one's needs, preferences, and concerns. Individuals with autism and their families can practise assertive communication by preparing statements in advance that clearly express their concerns or questions, particularly if they anticipate disagreement or require specific accommodations.

Using “I” statements: “I” statements are an effective way to express needs without sounding confrontational. For example, saying, “I need more time to process this information,” or, “I would prefer written instructions,” helps healthcare providers understand the patient's needs in a clear, non-judgmental way.
Setting boundaries: If certain procedures or environments cause distress, it is important to communicate these limitations. For instance, if sensory sensitivities are a concern, individuals and their families can request quieter rooms or lower lighting during appointments.

Strategies for Families to Support Communication
Families play a crucial role in supporting communication for individuals with autism in healthcare settings. In addition to advocating for accommodations, families can help reinforce the use of communication tools and strategies by modelling assertive communication and providing emotional support during appointments. This can help the individual with autism feel more confident and empowered during healthcare interactions.

Collaborative preparation: Families can work together with the individual to prepare for appointments by reviewing social stories, practising role-play scenarios, and making lists of questions or concerns.
Providing emotional support: The presence of a trusted family member during healthcare appointments can reduce anxiety and enhance communication. Supporters can help by summarising information, assisting with AAC tools, or clarifying questions on behalf of the individual.

Effective and assertive communication is essential for improving healthcare outcomes for individuals with autism. By using evidence-based strategies such as preparation, alternative communication methods, structured language, and assertive communication, individuals with autism and their families can enhance interactions with healthcare providers. Family involvement and advocacy are crucial components of this process, as they provide additional support for navigating complex healthcare systems. Empowering individuals with autism to communicate their needs assertively and ensuring that healthcare providers accommodate these needs will lead to more inclusive and effective healthcare experiences.

2.3 How to prepare for medical appointments and what questions to ask.

Preparing for Scheduling an Appointment

When planning a healthcare appointment, it is essential to recognise the rights of the individual with autism and their family. They must understand that they have the right to clear communication, informed decision-making, and appropriate accommodations. Healthcare professionals play a crucial role in promoting these rights and ensuring that concerns are acknowledged and addressed, fostering a more inclusive and supportive care experience.

When scheduling a healthcare appointment, it’s essential to have all the necessary information prepared to ensure a smooth process (Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), 2024a). This includes gathering the provider’s contact details, the reason for the visit, and any relevant personal or supporter contact information. Knowing your availability and having your health insurance details ready can further streamline scheduling. Once the appointment is confirmed, be sure to note the time, date, location, provider's name, and any special instructions. Organising this information using a worksheet can help you avoid surprises on the day of the appointment. If phone scheduling is difficult, there are alternatives. Many healthcare providers offer electronic systems for appointment scheduling, or you can ask a trusted person to make the appointment for you. Other options include visiting the office in person or using online relay services for phone calls. For those who generally struggle with scheduling, assistance from the provider's staff or the use of calendar software can be helpful.

Tools for Improved Healthcare Experiences
Autistic individuals can benefit from using specific tools to improve their healthcare experiences (Cody & Gelvin, 2024). It’s helpful to prepare a written list of questions and concerns for the physician and create an “all about me” document for moments when communication may be challenging. Using a body map to indicate areas of pain or discomfort can also be useful. Bringing a support person who understands your personal goals and needs can bridge communication gaps, and identifying a preferred communication method—such as using a patient portal or email instead of phone calls—can reduce stress during visits. Additionally, it may be helpful to inquire if the provider has received training in the SHARE approach for collaborative decision-making (Agency for Healthcare Research and Quality, 2023).

Preparing Autistic Children and Teenagers
The following recommendations are generally necessary for all individuals with autism, but they may be especially important for children. For autistic children and teenagers, preparing for appointments is vital to help them feel secure in unfamiliar settings (Miko et al., 2024). Ensuring they have the necessary skills, such as following instructions or sitting in a reclining chair, is important. Parents should communicate their child’s sensory sensitivities, preferences, and communication needs with the healthcare professional ahead of time. Gradually introducing the child to the location, through pictures or visits, can also ease anxiety. Scheduling appointments at less busy times, such as early in the day, and using visual aids like social stories or videos can further reduce stress. Watching others undergo similar experiences can also help them feel more comfortable.

Additional Support for Distressing Situations
In some cases, visiting an autism-friendly provider or arranging home visits may be beneficial. If the appointment is particularly distressing, mild sedatives or general anaesthesia might be necessary (Miko et al., 2024). Professionals skilled in behaviour strategies can offer additional guidance to ensure a smoother experience for the child. By combining a well-organised approach to scheduling with these proactive tools, individuals can better advocate for their healthcare needs and ensure more positive outcomes during medical appointments.

What questions to ask? Essential Questions and Tips
It's important to come prepared with key questions to guarantee thorough care and understanding, ensuring the individual with autism gets personalised and attentive care (NHS, 2023):

Before the Appointment:

1. Create a List of Questions: The individual with autism or their support person should identify 2 or 3 important questions to ask the doctor, focusing on tests, treatments, and what to expect next. This list can be prepared in advance to facilitate communication.
2. Document Medications: It’s important for the individual with autism, or their support person if needed, to compile a complete list of all medications the individual takes, including vitamins and supplements, to share with the healthcare provider.
3. Track Symptoms: The individual with autism, or their support person if needed, can note any symptoms experienced, when they started, and what helps or worsens them. This information will assist the doctor in understanding the individual's condition.

During the Appointment:

1. Right to Ask Questions Clearly: The person with autism or their support person should not hesitate to ask for clarification on any confusing points, such as saying, “Can you repeat that?”.
2. Right to Discuss Important Tests: The person with autism or their support person can inquire about specific tests that the individual may need, asking questions like:
- “What are these tests for?”
- “How and when will we receive the results?”
- “Who should we contact if we don’t get the results?”
3. Right to Inquire About Treatment Options: The person with autism or their support person should discuss the treatment plan with questions such as:
- “What are the treatments for this condition?”
- “What do you recommend?”
- “What side effects or risks should we be aware of?”
- “How will we know if the treatment is effective?”
4. Right to Understand Next Steps: It’s important to confirm what happens next by asking:
- What should we expect moving forward?
- Do we need to schedule a follow-up appointment, and if so, when?
- Who can we reach out to if the individual’s condition worsens?

In summary, the person with autism or their support person should feel comfortable asking for clarification if something isn’t understood during the appointment. Professionals should assure that this is encouraged because it guarantees that all necessary information is communicated clearly. Additionally, it helps to ensure therapeutic adherence and compliance, as it allows the individual and their support network to fully understand and engage with the treatment plan, leading to better outcomes.

It’s helpful to have important information written down and to take notes if possible. Before leaving, they should check that all questions have been answered and that they understand the next steps. After the appointment, it’s important to write down what was discussed, schedule any necessary tests, and keep track of the results, especially if they don’t receive them.

2.4 How to communicate preferences and concerns to professionals.

When communicating preferences and concerns about a proposed treatment, especially regarding its reliability, the evidence supporting it, or potential side effects, it’s essential to assert your rights to have these concerns acknowledged. Everyone has the right to clear and direct communication with healthcare providers, and it is crucial that these concerns are heard and addressed appropriately.

Right to Ask for clarification on the treatment’s purpose
If there are doubts about the treatment, start by asking the healthcare provider to explain the purpose of the treatment in simple terms. Questions like, “Can you explain what this treatment is for and how it will help?” or “Why do you recommend this treatment over others?” can provide clarity on why the treatment is being suggested.

Right to Inquire about evidence-based practices
If you’re unsure about the reliability or effectiveness of a treatment, ask about the evidence behind it. For example, you can ask, “Is this treatment based on scientific research or evidence-based practices for autism?” or “Are there other treatments that have been proven effective for this condition?” This allows the healthcare provider to explain how the treatment aligns with what is currently known in the field.

Right to Discuss potential side effects
Concerns about side effects are common when discussing treatments, so it’s important to ask specific questions like, “What are the potential side effects of this treatment?” or “Are there any risks associated with this treatment?” If the individual with autism has had negative reactions to medications or therapies in the past, it’s helpful to mention this as well.

Right to Request other options If you’re not comfortable with the proposed treatment, or if it doesn’t seem like the best fit for the individual’s needs, ask about alternatives. You might say, “Are there other treatment options that we can consider?” or “Is there a less invasive or more comfortable option available?” This opens the door for the healthcare provider to suggest different approaches that may be more suitable.

Right to Ask for time to consider the options
It’s okay to ask for more time to review the treatment options before making a decision. You can request, “Can we take some time to think about this before moving forward?” or “Can we discuss this treatment in more detail at the next appointment?” This gives you and the individual with autism the opportunity to weigh the pros and cons without feeling rushed.

Right to Request more Information
If understanding the treatment is difficult, ask the healthcare provider for written information or resources that you can review later. Questions like, “Do you have any written materials about this treatment?” or “Where can we find reliable information on this approach?” can help you gather more information.

Right to Consider a second opinion
If there are still concerns about the proposed treatment, it’s perfectly acceptable to ask for a second opinion. You can say, “I’d like to get a second opinion on this treatment to feel more confident in the decision.” This allows another healthcare professional to provide additional insights or alternatives.

In addition to the strategies mentioned, there are a few more considerations that can enhance communication about treatment options:

Advocate for personalised care
It’s important to emphasise that every individual with autism has unique needs and responses to treatments. Ask the healthcare provider how the proposed treatment can be tailored to the specific preferences, strengths, and challenges of the individual. For example, you can ask, “How will this treatment be adapted to fit [individual’s name]’s specific needs?” or “Are there modifications we can make to ensure the treatment is more comfortable?”

Involve the individual (if possible)
If the person with autism can participate, it’s important to include them in the decision-making process and value their input. Encouraging them to express how they feel about the treatment can provide valuable insight. This could be as simple as asking them how they feel about certain activities or medications if they can communicate in any way, verbally or nonverbally. You might ask, “How do you feel about trying this treatment?” or observe their reactions during the discussion.

Additionally, healthcare providers should avoid speaking about the individual as if they are not present. When the person with autism has the ability to communicate, the conversation should not be directed solely at family members or support persons. Instead, professionals should engage directly with the individual, acknowledging their autonomy and ensuring they are an active participant in their own healthcare decisions.

Ensure emotional and sensory considerations
For individuals with autism, certain treatments might cause sensory overload or emotional distress. It’s essential to communicate these concerns to the provider. You can ask, “How will this treatment affect [individual’s name] in terms of sensory sensitivity or anxiety?” or “What can be done to minimise stress during the treatment?” This helps healthcare professionals consider the broader impact of the treatment beyond its medical effects.

Follow up on progress
After starting a treatment, follow-up is crucial to monitor its effectiveness and any side effects. It’s helpful to ask the provider, “What signs should we look for to know if the treatment is working?” or “When should we contact you if we notice any issues?” Staying engaged and keeping an open line of communication ensures that the treatment can be adjusted if necessary.

In summary, communicating preferences and concerns about a treatment requires asking clear questions, seeking evidence-based answers, and ensuring that all potential risks and benefits are understood. The support person or individual with autism should feel comfortable discussing these issues openly to make informed decisions that align with the individual’s needs and preferences.

2.5 Handling disagreements and how to request second opinions.

When it comes to medical care, particularly for individuals with autism, it’s natural for caregivers or patients to have concerns or disagreements about proposed treatments. Navigating these situations can be challenging, but there are constructive ways to handle disagreements and request second opinions to ensure the best care for the individual. Open and respectful dialogue
If the person with autism or the family finds themselves disagreeing with a healthcare provider about a treatment plan, it’s important to maintain an open and respectful dialogue. Begin by clearly expressing your concerns in a calm and organised manner. For example, you might say, “I have concerns about this treatment because I’ve read about potential side effects,” or “I’m worried that this may not align with [individual’s name]’s sensory needs.” Avoid confrontation and instead aim for collaboration, asking questions that invite a thoughtful response from the provider.
It’s essential to be clear about the specific reasons for your concerns. Whether the disagreement is over the efficacy of the treatment, the potential side effects, or how the treatment might impact the individual’s sensory or emotional needs, providing specific examples or data can help guide the conversation productively. By framing the discussion as a mutual search for the best care, you create an environment where solutions are more likely to emerge.

Requesting a second opinion
If your concerns aren’t adequately addressed or if you feel uncertain about the reliability of the proposed treatment, requesting a second opinion is a valid and often encouraged option. You can explain to the provider that you value their expertise but would feel more confident with additional input. A simple, respectful way to request this could be, “I appreciate your insights, but I would like to get a second opinion to make sure we explore all options. Could you help me find another specialist?”
Most healthcare providers understand the importance of second opinions and should respond positively. If you encounter resistance, it’s important to remain calm and assert your right to seek additional input. Explain that you want to ensure you’re making the most informed decision for the person with autism. Second opinions are especially valuable when considering long-term treatments, invasive procedures, or when there’s uncertainty about the diagnosis itself.

Choosing the right specialist for a second opinion
When seeking a second opinion, it’s crucial to find a specialist who has experience with autism and the specific treatment or condition in question. In many cases, healthcare providers can refer you to another professional, but you can also research specialists independently. Consider seeking out a provider who has worked with individuals on the autism spectrum and who understands the nuances of treating people with sensory or communication differences.
In addition, it may be helpful to request input from autism advocacy organisations or networks of parents and caregivers who have experience with similar medical concerns. Their insights and recommendations can guide you toward finding the right healthcare professional for a second opinion.

Managing emotional stress
Disagreements about medical care can be stressful for both the caregiver and the individual with autism. It’s essential to manage the emotional stress of these situations by seeking support from family members, friends, or support groups. Keep in mind that asking for a second opinion or questioning a treatment plan is not a sign of distrust—it’s a way to ensure that the individual’s health and well-being are prioritised.
When discussing medical treatments, it can be helpful to involve a trusted person who can offer emotional support during difficult conversations. Whether it’s another family member or a friend, having someone with you can help you stay focused and feel more confident during the discussion.

Advocating for the best care
Handling disagreements and requesting second opinions are integral parts of advocating for the best care for individuals with autism. By maintaining open communication, respectfully expressing concerns, and seeking additional input when needed, you ensure that the treatment plan is both evidence-based and suited to the individual’s unique needs. Remember that the goal is always to find the best possible outcome, and sometimes this requires exploring different perspectives within the healthcare system.

Handling disagreements and requesting second opinions are essential for ensuring the best care for individuals with autism. To handle disagreements effectively, it's important to stay calm, focus on the facts, and express concerns clearly. Ensure that both sides understand each other and seek common ground to help resolve the disagreement. If needed, request a mediation meeting with a neutral party, like a patient advocate. When requesting a second opinion, communicate respectfully with the current professional and explain your reasons for wanting additional input. Select a specialist with experience in autism and ensure that all relevant medical records are transferred to avoid duplication. This approach helps ensure the best possible care.

3. Self-Advocacy and Active Participation

Chapter 3 empowers individuals with autism and their families to actively participate in their treatment process through self-advocacy and encourages professionals to promote their involvement. It provides practical strategies for effective self-advocacy, enabling individuals with autism to confidently assert their needs, preferences, and rights in various healthcare settings. The chapter underscores the vital role of individuals with autism and families as integral members of the treatment team, stressing the importance of their input and collaboration with healthcare professionals to ensure comprehensive and personalised care. Additionally, it offers guidance on developing personalised treatment plans that cater to the unique needs, preferences, and goals of individuals with autism, ensuring that care is both collaborative and tailored to the individual. By fostering active participation, informed decision-making, and effective communication, this chapter aims to enhance the overall treatment experience, improve outcomes, and ensure that the voices of individuals with autism and their families are heard and respected throughout the intervention process.

3.1 Strategies for self-advocacy in the context of autism.

Self-advocacy is a crucial skill for individuals with autism, especially when navigating the complex landscape of evidence-based treatments (Leadbitter et al., 2021). It empowers them to express their needs, preferences, and rights effectively while ensuring they have access to interventions that genuinely support their well-being. Families play an essential role in fostering self-advocacy by helping individuals understand their options and advocating for the best treatments. Key strategies to enhance self-advocacy include the following:

1. Understanding personal strengths and challenges Understanding what constitutes evidence-based treatment is fundamental for effective self-advocacy. Individuals and their families should familiarise themselves with scientifically validated interventions. By recognizing these practices, individuals can advocate for therapies that have been rigorously tested and shown to improve outcomes. Thus, gathering information about the effectiveness, potential side effects, and costs associated with different treatments may help families make informed decisions. Consulting credible sources, such as medical professionals, academic journals, and trusted autism organisations, can enhance this understanding. Healthcare professionals play a critical role in this process by providing accurate information, guiding families through available options, and ensuring that recommended interventions align with the individual’s specific needs.

2. Know Your Rights: Being aware of legal rights regarding access to evidence-based treatments is crucial. Families should educate themselves about local laws and regulations that support individuals with autism. Understanding these rights allows families to advocate for appropriate services and interventions in educational and healthcare settings.

3. Communicate Preferences Clearly: Effective self-advocacy involves articulating preferences for specific treatments or interventions. Individuals should practise expressing their feelings about various therapies and how they affect their daily lives. Families can assist by role-playing conversations with healthcare providers or educators, helping individuals gain confidence in discussing their needs and preferences regarding treatment.

4. Engage in Collaborative Decision-Making: Self-advocacy is strengthened through collaboration with professionals involved in care. Individuals with autism and their families should participate in discussions with healthcare providers about treatment options, outcomes, and any concerns they may have. This collaborative approach not only empowers individuals but also fosters a sense of ownership over their treatment journey.

5. Identify and Address Misinformation: Being aware of common myths and misinformation about autism treatments is essential for effective self-advocacy. Families can help individuals recognise unsupported claims, such as "miracle cures" or therapies that promise quick results without scientific backing. By understanding the signs of misleading information, individuals can advocate for evidence-based treatments and protect themselves from harmful interventions.

6. Develop Coping Strategies for Challenges: Self-advocacy may involve facing challenges or setbacks when pursuing evidence-based treatments. Families should work with individuals to develop coping strategies, such as stress management techniques or problem-solving skills, to navigate difficulties effectively. Encouraging resilience and persistence in advocating for their needs fosters a proactive approach to seeking appropriate interventions.

7. Celebrate Successes: Recognizing and celebrating achievements in self-advocacy can motivate individuals to continue advocating for themselves. Families should acknowledge milestones, such as successfully communicating a preference for a specific treatment or effectively addressing a concern with a healthcare provider. These celebrations reinforce the importance of self-advocacy and empower individuals to persist in their efforts.

By employing these strategies, individuals with autism and their families can become effective self-advocates in the realm of evidence-based treatments. This empowerment not only enhances access to quality interventions but also fosters a sense of agency and confidence in managing their care. Through informed decision-making and proactive advocacy, families can ensure that individuals receive treatments grounded in scientific evidence, ultimately leading to better outcomes and improved quality of life. Healthcare professionals guarantee that decisions are made collaboratively and work in alignment with autistic individuals and their families. Together, they can navigate the complexities of autism interventions, advocate for their rights, and promote a more inclusive environment that supports the needs of individuals on the spectrum.

In this context, the rise of autistic self-advocacy and the neurodiversity movement has sparked important debates in autism theory, research, and practice. All stakeholders in autism intervention, including families and health professionals, should understand and engage with autistic perspectives and neurodiversity, emphasising natural development, coping strategies, autonomy, and well-being (Finch et al., 2022).

3.2 The role of individuals with autism and their families in the treatment team.

In the journey toward effective autism interventions, the involvement of individuals with autism and their families is crucial. Recognizing their role as integral members of the treatment team fosters a more holistic approach to care. Individuals on the spectrum possess unique insights into their own experiences, preferences, and challenges, making their input invaluable in shaping treatment plans. Families, too, bring context and understanding that can enhance the therapeutic process, helping practitioners tailor interventions to better suit the individual’s needs.

Family members often serve as the primary advocates for individuals with autism, voicing concerns and preferences that may not be expressed verbally. This advocacy is not only about communicating needs but also about collaborating with healthcare professionals to ensure that interventions align with the values and priorities of the family unit. When families actively participate in discussions regarding treatment options, they can help create a supportive environment that encourages individuals with autism to engage more fully in their own care. This collaborative dynamic strengthens the partnership between families and professionals, leading to more effective outcomes.

Moreover, involving individuals with autism in decision-making processes can empower them to take ownership of their treatment journey. Encouraging self-advocacy helps individuals develop important skills that extend beyond the treatment setting. As they learn to articulate their needs and preferences, they gain confidence and self-awareness, essential components of personal growth. By fostering an atmosphere of mutual respect and understanding, treatment teams can empower individuals on the spectrum to express themselves and play an active role in their interventions.

Ultimately, the success of autism treatments relies on a shared commitment among all team members. By valuing the perspectives of individuals with autism and their families, treatment teams can develop more effective, individualised interventions. This collaborative approach not only enhances the quality of care but also promotes a more inclusive environment that recognises and respects the voices of those most affected by autism. As the field continues to evolve, prioritising the roles of individuals with autism and their families will remain essential to achieving positive outcomes and fostering a sense of agency in their treatment journeys.

3.3 Creating personalised treatment plans.

Personalised treatment plans are essential for effectively addressing the unique needs of individuals with autism. Recognizing that each person on the spectrum has distinct strengths, challenges, and preferences is the cornerstone of developing interventions that yield meaningful outcomes. Personalised plans not only enhance engagement and motivation but also foster a sense of ownership in the therapeutic process. By incorporating the perspectives of individuals with autism and their families, practitioners can design strategies that resonate with the individual’s experiences and aspirations.

The process of creating a personalised treatment plan begins with thorough assessments that consider various aspects of the individual’s life. This includes evaluating their cognitive abilities, communication styles, sensory preferences, and social interactions (World Health Organization, 2023). Additionally, it is crucial to understand the individual’s goals and the support they need to achieve them. This comprehensive understanding enables treatment teams to select interventions that align with the person’s current abilities while challenging them to grow and develop.

Involving individuals with autism and their families in the planning process ensures that the treatment plan reflects their priorities. When families contribute their insights and knowledge about their loved ones, it not only validates the individual’s experiences but also strengthens the therapeutic alliance. This collaborative approach fosters trust and open communication, creating a supportive environment where individuals feel empowered to engage actively in their treatment.

Moreover, personalised treatment plans should be flexible and adaptable, allowing for adjustments based on ongoing assessments and feedback. Regularly reviewing the effectiveness of interventions ensures that they remain relevant to the individual’s changing needs and circumstances. This iterative process encourages continuous learning and growth, reinforcing the idea that treatment is a dynamic journey rather than a one-size-fits-all solution.

Ultimately, the goal of personalised treatment plans is to support individuals with autism in reaching their full potential while respecting their unique identities. By centering interventions around the individual’s strengths, preferences, and aspirations, practitioners can create more effective and meaningful treatment experiences. This individualised approach not only promotes positive outcomes but also fosters a deeper understanding and appreciation of the diverse experiences within the autism spectrum.

3. Self-Advocacy and Active Participation

Chapter 4 assists individuals with autism and their families in effectively navigating the healthcare system and accessing essential services. It offers a detailed guide to understanding the structure and functioning of the healthcare system, including the various types of support services available, such as medical, educational, and therapeutic services. The chapter highlights a range of resources and organisations that provide invaluable assistance, information, and support, helping families to connect with the right services tailored to their specific needs. Additionally, it provides comprehensive guidance on planning for the transition to adulthood for young individuals with autism. This includes addressing critical aspects such as maintaining healthcare continuity, exploring educational and vocational opportunities, securing employment, and achieving independent living. By covering these areas, the chapter ensures that young adults with autism are well-prepared and supported during this pivotal phase of their lives, promoting a smooth and successful transition into adulthood.

4.1 Guide to understanding the healthcare system and support services.

Navigating the healthcare system for individuals with autism and their families is a complex process due to numerous medical, financial, and systemic barriers. Understanding the complexities of healthcare services and the various barriers that may arise is crucial for accessing appropriate support and interventions (Malik-Soni et al., 2022).

Autism often comes with additional medical conditions, such as gastrointestinal disorders, epilepsy, feeding challenges, and chronic sleep issues, all of which require specialised care. To address the diverse needs of individuals with autism, an effective healthcare team integrates a multidisciplinary group of professionals—including physicians, psychiatrists, paediatricians, nurse practitioners, speech-language pathologists, occupational therapists, and genetic counsellors—each contributing to both the physical and developmental aspects of comprehensive, individualised care that promotes overall well-being (Adina ABA, 2024; Golden Steps ABA, 2024).

Key Healthcare Providers in Autism Care:
General physicians, including family doctors and internists, are often the first point of contact in the healthcare system for individuals with autism. They provide routine medical care, assess physical health, and monitor chronic conditions that may impact the individual’s overall health and well-being. Physicians play a crucial role in advocating for their patients, referring them to specialists when needed, and ensuring that all aspects of the patient's health are considered in a holistic treatment approach.

Paediatricians monitor the overall health and developmental progress of children with autism, ensuring that medical milestones are met, and physical health issues are effectively managed. They play a critical role in the early identification of autism and associated medical conditions, such as gastrointestinal disorders or sleep disturbances, which can affect the well-being of autistic individuals. Paediatricians also coordinate care among specialists, ensuring a comprehensive approach to health management.

Nurse practitioners offer ongoing medical care, managing medications and ensuring treatment consistency under the supervision of physicians. They provide essential health education to families, helping them understand treatment plans and the importance of adherence. Nurse practitioners also play a crucial role in monitoring the efficacy of medications and making necessary adjustments to optimise health outcomes, often utilising evidence-based guidelines to inform their practice.

Psychiatrists play a vital role in diagnosing and treating mental health disorders that frequently co-occur with autism, such as anxiety and depression. Their expertise in psychopharmacology allows them to prescribe medications that can alleviate these symptoms, improving the overall quality of life for individuals on the spectrum. They also provide therapeutic interventions, such as cognitive-behavioural therapy (CBT), which has been shown to be effective in addressing anxiety and other emotional challenges.

Psychologists assess and treat behavioural and emotional challenges associated with autism. They provide various therapeutic interventions which are evidence-based approaches shown to be effective in improving social skills, reducing anxiety, and addressing challenging behaviours. Psychologists also conduct assessments to understand an individual’s cognitive strengths and weaknesses, guiding tailored interventions that promote emotional regulation and coping strategies.

Speech-language pathologists assess and treat communication difficulties in individuals with autism. They employ evidence-based interventions for speech delays and provide alternative communication methods, such as picture exchange systems or augmentative communication devices, for non-verbal individuals. Their work is crucial in enhancing social interaction skills and facilitating effective communication, which can significantly improve quality of life and social integration.

Occupational Therapists
Occupational therapists focus on developing essential life skills and improving independence in individuals with autism through tailored therapy activities. They address sensory processing issues and motor difficulties by designing interventions that help individuals navigate everyday tasks, such as self-care, play, and social interactions. Evidence-based practices, such as sensory integration therapy, are often employed to support sensory regulation, which can enhance engagement and participation in daily activities.

Genetic counsellors provide valuable insights into the potential genetic causes of autism, offering guidance on potential treatments and how these factors may impact other relatives. They facilitate discussions about genetic testing, which can inform diagnosis and treatment options. By providing education and support, genetic counsellors empower families to make informed decisions regarding interventions and to understand the long-term considerations for health management within the context of the individual’s family history.

Other Key Healthcare Providers in Autism Care
In addition to the professionals mentioned above, various other healthcare providers can play a crucial role in supporting individuals with autism, depending on their specific needs and the structure of the healthcare system. Neurologists assess and manage neurological conditions that may co-occur with autism, such as epilepsy or migraines, ensuring appropriate medical interventions when necessary. Dentists address oral health challenges that may arise due to sensory sensitivities or difficulties with dental hygiene, providing specialised care to accommodate the unique needs of autistic individuals. Nutritionists and dietitians play a key role in managing dietary concerns, including food aversions, gastrointestinal issues, and nutritional deficiencies, helping to develop balanced meal plans that support overall health and well-being. Ophthalmologists evaluate and treat vision-related issues, which can sometimes be linked to sensory processing differences in autistic individuals. Other professionals, such as audiologists, gastroenterologists, and endocrinologists, may also be involved in care, depending on the individual's medical history and co-occurring conditions. A multidisciplinary approach that integrates these specialists ensures comprehensive and personalised healthcare for individuals on the autism spectrum.

Additionally, various support services can assist families in navigating the complexities of autism care. Advocacy organisations offer resources to educate families, facilitate access to community support groups, and provide guidance on legal rights and advocacy. These organisations often hold workshops, seminars, and offer materials that empower families to advocate for the care and education their loved ones need.

Addressing Barriers to Healthcare Access:
Accessing appropriate healthcare for individuals with autism is often hindered by multiple barriers. Limited availability of services results in long wait times for diagnosis and treatment, while financial challenges can arise, especially for families without adequate insurance coverage or in countries where autism treatments are not covered by national health systems. Even when services are available, physician awareness of autism can be insufficient, leading to misdiagnosis or inadequate treatment recommendations. This lack of awareness emphasises the need for better education and training among healthcare providers to foster a more inclusive and effective healthcare system.

Barriers to care can vary based on the individual's age. In childhood, delays in screening and diagnosis may prevent timely intervention. During the transition to adulthood, there is often a lack of adequate services, leaving many adults with autism without the care they need. Many healthcare providers are also unfamiliar with the specific needs of autistic adults, complicating the process of obtaining specialised care.

Poor Health Habits: Poor health habits such as selective eating or resistance to physical activity are common among individuals with autism and can negatively impact their overall health. These behaviours require careful attention from healthcare providers, who must tailor interventions to address issues like nutrition and encourage physical activity in a way that meets the individual needs of each person. For example, working with dietitians or developing sensory-friendly physical activity programs can help improve overall health and well-being.

Caregiver Well-Being and Self-Care: Caring for a loved one with autism can be physically and emotionally demanding, which makes self-care for caregivers essential. Caregivers are encouraged to seek support from community groups, schedule regular breaks for respite care, and engage in self-care activities such as exercise and hobbies. Staying informed about the latest autism research and therapies allows caregivers to make well-informed decisions and feel empowered in their role. Prioritising their own well-being helps caregivers provide consistent, compassionate care without burning out, which is essential for long-term caregiving.

In conclusion, ensuring comprehensive care for individuals with autism requires a multidisciplinary approach and a deep understanding of the medical and systemic challenges they face. By working with a team of specialised professionals, addressing barriers to healthcare access, and engaging with available support resources, families can better advocate for their loved ones. Caregivers must also prioritise their own health and well-being to sustain the level of care needed for their family members. Through knowledge, collaboration, and self-care, families can navigate the complexities of autism care more effectively, improving the social, physical, and mental health outcomes for individuals with autism throughout their lives.

4.2 Planning for the transition for young adults with autism.

Transitioning from adolescence to adulthood can be a significant challenge for young adults with autism, requiring careful planning and support. This period of life is marked by numerous changes, including shifts in educational settings, healthcare needs, and independent living skills. Families play a crucial role in this transition process by helping their loved ones prepare for adulthood.

One key aspect of planning for this transition is to begin early. Ideally, families should start discussing future goals and aspirations with their young adults around the age of 14 or 15. This proactive approach allows for a gradual exploration of interests, strengths, and challenges, laying the groundwork for a successful transition.

As part of the transition planning, families should work closely with educators and support staff to develop an Individualised Education Program (IEP) that includes transition goals. This IEP should outline specific skills that the young adult needs to develop, such as job readiness, self-advocacy, and daily living skills. Collaborating with vocational rehabilitation services can also provide access to job training and employment opportunities tailored to the individual’s strengths and interests.

Social skills and community integration are also vital during this transition. Encouraging participation in community activities, social groups, or clubs can help young adults build friendships and develop a sense of belonging. These experiences not only enhance social skills but also promote independence and self-confidence.

Ultimately, the transition to adulthood for individuals with autism requires thoughtful planning and collaboration among families, educators, healthcare providers, and community organisations. By fostering a supportive environment and focusing on individual strengths and goals, families can help their young adults navigate this critical life stage successfully, paving the way for a fulfilling and independent adulthood.

The Importance of Healthcare Planning in the Transition to Adult Services for Young Adults with Autism:
Healthcare planning is a vital component of the transition from adolescence to adulthood for individuals with autism. As young adults move from paediatric to adult healthcare services, the need for ongoing medical and mental health support becomes increasingly evident. This transition can be challenging, given the complexities of navigating a new healthcare system that may not be as familiar or accommodating as paediatric services (Ames et al., 2023; Enner et al., 2020). Therefore, it is essential to ensure that young adults have access to healthcare providers who understand their unique needs and are well-versed in evidence-based treatments for autism.

One significant challenge during this transition is the potential for gaps in care. Many young adults with autism have relied on a team of paediatric specialists who have closely monitored their development and health needs. As they age out of paediatric care, they may encounter healthcare providers who lack the specialised training or understanding necessary to address the specific challenges associated with autism. Families must actively advocate for their loved ones to ensure they receive appropriate and continuous care.

To facilitate this transition, families should begin by familiarising themselves with adult healthcare services well before their young adults reach the age of 18. This proactive approach can involve researching local healthcare providers, clinics, and specialists that focus on autism and related conditions. It may also be beneficial to establish connections with support networks, advocacy groups, and community organisations that can provide guidance on navigating the adult healthcare landscape.

In addition to finding suitable healthcare providers, it is crucial for families to understand the range of evidence-based treatments available for autism. By educating themselves about these treatments, families can advocate for their young adults and ensure that they receive therapies that are proven effective. Moreover, families should work closely with healthcare providers to develop a comprehensive care plan that addresses the physical, mental, and emotional well-being of their young adults. This care plan should include regular health check-ups, mental health assessments, and tailored interventions that reflect the individual's needs and goals. Ensuring continuity of care during this transition is crucial, as young adults with autism may experience heightened anxiety or stress when faced with new healthcare environments and professionals.

Education and self-advocacy are also essential components of this transition. Families should encourage young adults to take an active role in their healthcare decisions, fostering independence and self-awareness. This can include teaching them about their health conditions, potential treatment options, and how to communicate their needs effectively to healthcare providers. By empowering young adults to advocate for themselves, families can help them navigate the complexities of the adult healthcare system with greater confidence.

In summary, healthcare planning is an integral part of the transition from adolescence to adulthood for individuals with autism. By ensuring access to knowledgeable healthcare providers, familiarising themselves with evidence-based treatments, and developing comprehensive care plans, families can significantly improve the health outcomes and overall quality of life for their young adults. This proactive approach to healthcare planning not only addresses immediate health needs but also supports long-term well-being as individuals with autism transition into adulthood.

Self-assessment

Question text

Extra resources and references

Extra resources:

Primary Care Resources for Adults on the Autism Spectrum and their Primary Care Providers (Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), 2024b):
https://autismandhealth.org/

“All about me” templates to provide essential personal information and help professionals offer personalised care and support (NHS, 2017; NHS, 2022)
https://www.bedfordshirehospitals.nhs.uk/wp-content/uploads/2018/03/All-About-Me-2017.pdf
https://www.uhsussex.nhs.uk/wp-content/uploads/2022/11/My-care-passport-1.pdf

View2Do is an online tool for creating personalised teaching aids, ideal for visual learners and students with learning differences (Do2Learn, 2024):
https://do2learn.com/picturecards/printandgo/fordoctors/index.htm

How to prepare your autistic child for dental visits (Autism Speaks, 2024):
https://www.autismspeaks.org/tool-kit-excerpt/how-prepare-your-autistic-child-dental-visits

Advice about medicines and medical appointments if you're autistic (NHS, 2024):
https://www.nhs.uk/conditions/autism/autism-and-everyday-life/advice-about-medicines-and-medical-appointments/

Example for a social story about going to the doctor (Wise, 2017):
https://www.educationandbehavior.com/story-about-going-to-the-doctor/

Preparing for a Visit to the Doctor’s Office tips (McLaughlin, 2019):
https://pathfindersforautism.org/wp-content/uploads/2019/12/Preparing-for-a-Doctor-Visit.pdf

Transitions from Pediatric to Adult Medical Care – Webinar (Corder & Cuomo, 2024): https://autism.org/transition-medical-care-adulthood/

Spain:

Guías sobre salud en lectura fácil: https://www.plenainclusion.org/noticias/guias-sobre-salud-en-lectura-facil/

Historias sociales sobre los servicios de salud y las pruebas médicas: https://autismonavarra.com/materiales-y-enlaces-de-interes/historias-sociales-autismo/

Hoja de ruta para la transición de la atención médica - Guía para pasar de la atención pediátrica a la atención médica de adultos: https://docs.autismspeaks.org/healthcare-transition-roadmap-spanish/

Guía para cuidadores de niños autistas y los profesionales de la odontología que los atienden:
https://cdn.brandfolder.io/BNH251ZH/as/phff5b8t5nhjx3tnvhb2vv5/Dental_Tool_Kit_Spanish.pdf

Programa para facilitar las visitas médicas de las personas con autismo:
http://www.doctortea.org/

Guía práctica para facilitar el acceso a una asistencia sanitaria adecuada para personas con autismo:
https://autismomadrid.es/wp-content/uploads/2020/03/guia_cermi_madrid_2019_acceso_asistencia_sanitaria_te_online.pdf

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Glossary of terms

1. AAC (Augmentative and Alternative Communication):
Tools and strategies that help individuals with communication difficulties express their needs and ideas, including communication boards, apps, and devices.

2. Advocacy:
The act of supporting or promoting the interests of individuals with autism and their families, often through raising awareness, influencing policy, and securing access to necessary services.

3. Alternative Communication Methods:
Non-verbal communication strategies that individuals with autism can use to express their needs when verbal communication is challenging, such as AAC tools, sign language, and gesture-based communication.

4. Anecdotal Evidence:
Information derived from personal accounts or stories rather than scientific data, which illustrates individual experiences but does not provide reliable proof of treatment effectiveness.

5. Autonomy:
The right of individuals to make their own decisions regarding their health care and treatment options, emphasising respect for the individual's preferences in medical contexts.

6. Barriers to Healthcare Access:
Obstacles preventing individuals with autism and their families from receiving appropriate healthcare, including limited-service availability, financial challenges, and insufficient physician awareness of autism.

7. Beneficence:
An ethical principle requiring healthcare providers to act in the best interests of patients, promoting their well-being and improving their quality of life.

8. Chronic Conditions:
Long-lasting health issues that often co-occur with autism, such as gastrointestinal disorders and sleep disturbances, requiring specialised care.

9. Collaborative Decision-Making:
A process in which individuals, families, and professionals work together to make informed choices regarding treatment options.

10. Confidentiality:
The ethical principle of maintaining the privacy of individuals’ personal and clinical information, fostering trust in the healthcare professional-patient relationship.

11. Coping Strategies
Techniques or methods used to manage stress, anxiety, or emotional challenges, helping individuals advocate for their needs.

12. Diagnosis Overshadowing
A phenomenon where symptoms experienced by individuals with autism are overlooked or misattributed to existing conditions, leading to insufficient investigation and support.

13. Early Intervention
The practice of implementing therapeutic strategies and supports as early as possible in the life of a child with autism to improve developmental outcomes.

14. Evidence-Based Interventions
Therapeutic practices supported by scientific research demonstrating their effectiveness in managing autism symptoms.

15. Genetic Counsellors
Professionals who provide insights into the genetic aspects of autism, discussing potential genetic causes and implications for treatment.

16. Healthcare Planning
The process of organising and coordinating healthcare services for individuals with autism, especially during the transition from paediatric to adult healthcare systems.

17. Human Rights
The fundamental rights and freedoms entitled to all individuals, including those with autism, ensuring access to appropriate healthcare and protection from discrimination.

18. Individualised Treatment
A healthcare approach recognizing the unique differences and needs of individuals with autism, leading to customised healthcare plans.

19. Informed Consent
An ongoing process ensuring individuals or their guardians receive and understand necessary information to make autonomous decisions about treatment.

20. Multidisciplinary Team
A collaborative group of healthcare professionals from various fields providing comprehensive care for individuals with autism.

21. Neurodiversity Movement
A social and cultural movement promoting the recognition of neurological differences, such as autism, as natural variations of the human experience.

22. Nurse Practitioners
Advanced practice registered nurses who provide ongoing medical care and manage medications for individuals with autism.

23. Occupational Therapists
Healthcare professionals focusing on developing life skills and enhancing independence in individuals with autism.

24. Paediatricians
Physicians specialising in the care of children, including those with autism, monitoring developmental progress and coordinating care among specialists.

25. Physicians
Medical doctors serving as the first point of contact for individuals with autism, providing routine care and assessing overall health.

26. Poor Health Habits
Behaviours negatively impacting health, such as selective eating or lack of physical activity, commonly observed in individuals with autism.

27. Post-Traumatic Stress Disorder (PTSD)
A mental health condition triggered by experiencing or witnessing a traumatic event, which may co-occur with autism.

28. Professionalism
A foundational quality in healthcare that includes adherence to ethical standards and commitment to continuous improvement.

29. Psychiatrists
Medical doctors specialising in mental health, responsible for diagnosing and treating co-occurring mental health disorders in individuals with autism.

30. Psychologists
Professionals who assess and treat emotional and behavioural challenges associated with autism using evidence-based therapies.

31. Respite Care
Temporary relief services for caregivers of individuals with autism, allowing them to take a break from caregiving responsibilities.

32. Self-Advocacy
The ability of individuals to speak up for themselves, communicate their needs, and make informed decisions about their care.

33. Sensory Sensitivities
Increased sensitivity to sensory input commonly experienced by individuals with autism.

34. SHARE Approach
A collaborative decision-making model involving Sharing information, Helping patients explore options, Assessing values and preferences, Reaching decisions together, and Evaluating the decision made.

35. Social Stories
Short narratives that describe social situations and expected behaviours, helping children with autism prepare for new experiences.

36. Speech-Language Pathologists
Specialists who assess and treat communication difficulties in individuals with autism, providing interventions for speech delays.

37. Stakeholders
Individuals or groups with an interest in autism interventions, including individuals with autism, their families, and healthcare professionals.

38. Stigmatization
The social process of devaluing individuals based on perceived differences, leading to discrimination and exclusion.

39. Telehealth Services
Remote healthcare services delivered via technology, allowing individuals with autism to access medical support without travelling.

40. Treatment Efficacy
The effectiveness of a therapeutic intervention in achieving desired outcomes for individuals with autism.

41. Treatment Plan
A comprehensive outline detailing recommended medical interventions, therapies, and follow-up procedures for an individual’s condition.

42. Transition Planning
The process of preparing individuals with autism for the transition from adolescence to adulthood, including education, employment, and independent living skills.

43. Visual Aids
Tools such as pictures, symbols, or videos that help individuals with autism understand the steps involved in healthcare visits.

MODULE 4: Empowering: Rights and tools for informed decisions and active participation in the intervention process.

Objectives and competences for the module

Module index

1. Patient and Family Rights

1.1 Respect for Dignity and Individual Rights

1.1.1. Individualised treatment: Recognise and respect the individual differences, preferences, and needs of people with autism.

1.1.2. Human rights: Ensure that all interventions and treatments respect the human rights and dignity of individuals with autism.

1.2 Nonmaleficence

1.2.1. Avoid harm: Avoid any intervention that could cause physical, psychological, or emotional harm.

1.2.2. Minimise risks: Ensure that the benefits of any intervention outweigh the potential risks.

1.3 Beneficence

1.3.1. Promote well-being: Actively work to promote the well-being and optimal development of individuals with autism.

1.3.2. Evidence-based interventions: Use interventions and practices that are backed by scientific research and have been proven effective.

1.4 Autonomy

1.4.1. Support for decision-making: Encourage and support the autonomy of individuals with autism, including their involvement in decisions regarding their treatments and interventions.

1.4.2. Informed consent: Ensure that individuals with autism, or their legal guardians when applicable, receive all necessary information to make informed decisions.

1.5 Justice

1.5.1. Equity in access to interventions: Work to ensure that all individuals with autism have equitable access to quality interventions and resources, regardless of their economic, geographic, or cultural situation.

1.5.2. Adaptation to individual needs: Adjust interventions to meet the unique needs of each individual, avoiding discrimination and promoting equal opportunities.

1.6 Confidentiality

1.6.1. Protect personal information: Maintain the confidentiality of all personal and clinical information of individuals with autism, sharing it only with explicit consent or when ethically or legally required.

1.7 Professionalism

1.7.1. Continuous professional development: Commit to continuous education and professional development to stay up-to-date with best practices and the latest research in the field of autism.

1.7.2. Self-assessment and reflection: Critically reflect on one’s own practice, seeking constant improvement and ethically responding to challenges.

2. Communication Skills with Healthcare Professionals

2.1 The importance of working as a team in collaboration with professionals.

2.2 Strategies for effective and assertive communication.

2.3 How to prepare for medical appointments and what questions to ask.

2.4 How to communicate preferences and concerns to professionals.

2.5 Handling disagreements and how to request second opinions.

3. Self-Advocacy and Active Participation

3.1 Strategies for self-advocacy in the context of autism.

3.2 The role of individuals with autism and their families in the treatment team.

3.3 Creating personalised treatment plans.

3. Self-Advocacy and Active Participation

4.1 Guide to understanding the healthcare system and support services.

4.2 Planning for the transition for young adults with autism.

Self-assessment

Question text

Extra resources and references

Glossary of terms