How can patient advocates effectively support patients with autism?

Patient advocates are professionals who help patients navigate the complex and often overwhelming healthcare system. They can provide information, education, guidance, and support to patients and their families, especially when they face challenges or barriers to accessing quality care. For patients with autism, a developmental disorder that affects communication, social interaction, and behavior, patient advocacy can be particularly valuable and beneficial. In this article, we will explore how patient advocates can effectively support patients with autism and what resources and networks they can use to enhance their skills and knowledge.

1 Understand the spectrum

Autism is not a one-size-fits-all condition. It is a spectrum disorder, which means that there is a wide range of symptoms, abilities, and needs among people with autism. Some may have mild impairments and high levels of independence, while others may have severe challenges and require constant care and assistance. Therefore, patient advocates need to understand the individual characteristics and preferences of each patient with autism and tailor their services accordingly. They also need to respect the diversity and dignity of people with autism and avoid stereotypes or assumptions.

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Sharon Didrichsen

Founder and Managing Director, Specialisterne Northern Ireland
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Some studies provide insight into the experiences of autistic people while accessing a healthcare system, some of which contribute to unmet needs. For example, in 'A qualitative study of the service experiences of women with autism spectrum disorder.' (Tint and Weiss (2017)), one participant comments that 'So whatever you're most capable is, they assume that's how you are all the time...But I can't even pick up the phone to call you on those hard days' (p931). Of interest also is the use here of the term disorder. Recent studies discourage the use of terms such as this to refer to autistic people. Overall each person gets to decide how to refer to being autistic. Giving people choice of how to access services is a useful starting point.

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2 Communicate effectively

Communication is a key skill for any patient advocate, but it is especially important when working with patients with autism. Many people with autism have difficulties with verbal and nonverbal communication, such as understanding tone, gestures, facial expressions, or sarcasm. They may also have sensory sensitivities, such as being overwhelmed by loud noises, bright lights, or strong smells. Patient advocates need to communicate clearly, patiently, and respectfully with patients with autism and use strategies that suit their communication style and needs. For example, they can use visual aids, simple language, repetition, or written instructions to convey information and check for understanding.

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Rich Seiber

Hubby. Special needs parent. Conservative stuck in California.
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I know when I try to explain my son's autism to doctors, friends or teachers, I am sometimes guilty of using terms like high or low functioning. But I am also good at communicating specifics like he is verbal. He is mobile. He is potty trained. He struggles with conversation. He needs help regulating anger. Maybe it is just about encouraging people to be specific about strengths and weaknesses.

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Rachel Madryga, MCM, MUD, MARCH

Diversity & STEM Program Manager| GPCP|Empowering Diversity in STEM | Building Bridges for Inclusive Innovation| Triple Masters| Data Driven & Community Focused| Educator | Forever Learner| DEIA Champion | Public Service
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Words also matter, word choice when describing a disability or information can really impact how a person views themselves/ how others treat them. It's great to be mindful of this especially when working with children and young adults on the spectrum. It's a spectrum, not everything is universal.

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3 Collaborate with the care team

Patients with autism often have multiple and complex health issues that require coordination and collaboration among various healthcare providers, such as doctors, nurses, therapists, educators, and social workers. Patient advocates can play a vital role in facilitating this collaboration and ensuring that the patient's voice and goals are heard and respected. They can help the patient and their family create a care plan, share relevant information and records, schedule appointments, follow up on referrals, and resolve any conflicts or concerns. They can also advocate for the patient's rights and interests and help them access the best possible care and support.

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Sashikala Bandaru PT

Neurological Physiotherapist
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In many clinical scenarios, patient advocates guide the patient and the family in view of eliminating the communication barriers that sometimes exist between the therapist and the patient or caregiver. As autism demands a multidimensional approach to intervention, the patient advocates frame the protocols with the therapist's directions and monitor the progress accordingly.

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4 Provide emotional support

Living with autism can be stressful and challenging for both the patient and their family. They may face stigma, discrimination, isolation, or frustration in their daily lives. Patient advocates can provide emotional support and empathy to patients with autism and their family and help them cope with their feelings and emotions. They can also connect them with other sources of support, such as peer groups, counselors, or online communities, where they can share their experiences and learn from others. Patient advocates can also help the patient and their family celebrate their strengths and achievements and foster a positive self-image and confidence.

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5 Educate yourself and others

As a patient advocate, you need to keep yourself updated and informed about the latest research, trends, and best practices in autism care and advocacy. You can do this by attending workshops, webinars, conferences, or courses that focus on autism-related topics and issues. You can also join professional networks and associations that provide resources, training, and mentoring for patient advocates who work with patients with autism. For example, you can check out the Autism Society of America, the Autism Speaks Resource Guide, or the National Association of Healthcare Advocacy. By educating yourself and others, you can enhance your skills and knowledge and improve the quality and outcomes of your services.

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6 Respect the patient's autonomy

One of the core principles of patient advocacy is to respect the patient's autonomy, which means their right to make their own decisions and choices about their health and well-being. For patients with autism, this may mean that they have different preferences, values, or goals than their family or care team. Patient advocates need to respect and support the patient's autonomy and help them express their wishes and concerns. They also need to ensure that the patient's consent and assent are obtained and respected for any medical procedures or interventions. Patient advocates can also help the patient with autism access tools and resources that can enhance their autonomy, such as assistive technology, self-advocacy training, or legal representation.

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Rachel Madryga, MCM, MUD, MARCH

Diversity & STEM Program Manager| GPCP|Empowering Diversity in STEM | Building Bridges for Inclusive Innovation| Triple Masters| Data Driven & Community Focused| Educator | Forever Learner| DEIA Champion | Public Service
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Sometimes it's always great to remind ourselves that "autism" does not define a person, and they are people too. Often this basic understanding is ignored or accessibility is looked at as a hurdle or special need. People are people and deserve equity, respect and same opportunities as the world surrounding, no matter their "disability".

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7 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

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How can patient advocates effectively support patients with autism?

1

2

3

4

5

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1 Understand the spectrum

2 Communicate effectively

3 Collaborate with the care team

4 Provide emotional support

5 Educate yourself and others

6 Respect the patient's autonomy

7 Here’s what else to consider

Patient Advocacy

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How can patient advocates effectively support patients with autism?

1

2

3

4

5

6

7

1 Understand the spectrum

2 Communicate effectively

3 Collaborate with the care team

4 Provide emotional support

5 Educate yourself and others

6 Respect the patient's autonomy

7 Here’s what else to consider

Patient Advocacy

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