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Healthcare specific adjustments – service design

First contact with healthcare settings

In their 2019 study Cage and Troxell-Whitman 2019 found several factors deter autistic people from seeking or continuing care. These include inflexible booking systems, hurried instructions, and ambiguous administrative procedures.

Often a PDAers first contact with a healthcare provider is either through using a booking system or receiving a letter about an appointment. Unfortunately, these systems can set up an unhelpful dynamic from the start. In this section we cover what barriers can be created, and actions you, or your organisation can take to make things easier.

Barriers to appointment booking:

  • Inflexible booking systems: Many GP surgeries and social care services require calling first thing in the morning for limited appointment slots. A person with PDA may find multiple attempts, busy lines, and time-pressured decisions incredibly stressful. If no “emergency” slots are left, they might be told to call back the next day, compounding the anxiety of repeated demands.
It is helpful to consider:
  • Offering a variety of ways to book an appointment: offering email, text messaging, or an online booking system as well as phone options will be
  • Even for urgent matters, providing a direct email address or secure chat can ease anxiety.
Demanding or authoritative letters; letters that contain controlling text such as “If you don’t confirm within 48 hours, your appointment will be cancelled”-can intensify the sense of threat. The threat of negative consequences (e.g. referral back to a GP or social worker, or case closure if the patient fails to act) may in some cases make it harder for PDAers to undertake the actions asked of them. This authoritative tone can escalate demand avoidance and lead to missed appointments (Cage & Troxell-Whitman, 2019).

It is helpful to consider:

  • Rewriting standard letters to sound collaborative rather than authoritarian. For instance: “We understand making or changing appointments can sometimes be stressful. Please let us know if you need extra time or alternative ways to confirm.”
  • Replacing “You must do X within Y days” with invitations to contact the service if they need changes, plus a clear explanation of why deadlines exist.
Unclear or inflexible processes: Some booking pathways assume everyone can comfortably handle phone calls, fill out online forms, or attend at set times. Interactions with frontline staff (receptionists for example) can be experienced as inflexible, controlling or authoritative. For a PDAer who has an anxiety response to demands, each extra step can raise the internal resistance to engaging.

It is helpful to consider:

  • Training frontline staff-receptionists, admin teams, or duty social workers-to adopt a respectful, friendly tone that doesn’t assume power over the person.
  • Simple phrasing like, “Let’s see how we can make this easier,” rather than “You must attend on this date,” can reduce perceived demands.
Sometimes adaptations can’t be made and, quick appointments or deadlines are inevitable. When this happens explaining why helps people understand that this is driven by necessity, not by arbitrary rules.

First appointments/ meetings

Setting up a first appointment well-whether in health or social care-can ease anxiety, build trust, and encourage continued engagement. Research shows that providing clear information about roles, processes, and options helps autistic individuals have better experiences (Cage & Troxell-Whitman, 2019; Kildahl et al., 2021). Below are ways to offer a safer, less demanding introduction.

Before the appointment consider:

  • Who will be there – Giving names, job titles, and why each person is attending. For example, “This is Sarah, your social worker, who will help check your current support plan.”
  • Purpose of the meeting – Sharing the main goal in simple terms. For instance, “We’re meeting to see how well your treatment plan is working,” or “It would be helpful to talk about how best to help with day-to-day tasks.”
  • Location and layout – Providing details on getting there, which entrance to use, and whether there’s a waiting room. Offering a map if it’s a large building. This can lower anxiety.
  • Wait times – If there is a waiting area, say how long the wait might be. If a quieter space is available, let them know.
  • Paperwork and expectations – Mentioning any forms they might have to complete. If possible, offering the option to fill them out online or in advance.
  • Appointment structure – Explaining if shorter or split appointments are possible. Confirm whether they can bring someone they trust.
  • Decision points – Noting any important choices they might face, like changes to a care plan. Explaining how they can share their views.
You might also take the opportunity to ask if there are ways to make things easier for them. You can do this by:
  • Asking open questions such as, “Is there anything we can do to make this appointment easier?” and providing some suggestions.
  • Being honest about what you can and cannot change: “We can rearrange seating or find a quieter time, but we can’t change the building’s opening hours.”
  • Letting them know if you can adjust start times or break the session into parts.
It can be useful to remember that:
  • Clarity lowers anxiety – Studies show that autistic adults do better when they get clear, detailed information before an appointment (Cage & Troxell-Whitman, 2019).
  • Collaboration builds trust – In mental health and disability services, planning together or co-creating schedules helps reduce fears about the unknown (Kildahl et al., 2021).
Providing thorough pre-appointment information, offering possible adjustments, and framing demands as joint efforts-rather than fixed instructions-helps PDAers feel informed and in control. Even small steps, like emailing the name and photo of the attending professional or offering an online map, show respect for the person’s needs. These steps can lead to more positive sessions and better long-term engagement.

Making adjustments to a physical environment

Luke Beardon highlights what he calls the “golden equation,” stating that “autism plus environment equals outcome.” In Avoiding Anxiety in Autistic Children, he challenges many standard assumptions and underscores how the physical and social environment can profoundly affect anxiety levels and behaviour. For PDAers-where heightened anxiety around demands is the core difficulty-attention to the environmental setup can be critical.

Healthcare clinics, social work offices, and other professional environments often unintentionally impose demands through their design or signage. Reviewing the following points can help ensure that spaces feel less restrictive or confrontational for PDAers:

1. Choice of seating

  • Providing more than one chair in a consulting room helps avoid the sense of a single “correct” seat.
  • Avoid setting up the room so that there is exactly one seat per person, or so that only the clinician has multiple seating options.
2. Avoiding hierarchies

  • Setting up spaces so clinicians can sit alongside, rather than opposite, can reduce the power imbalance often signalled by a desk or formal barrier.
  • Rearranging furniture to create a collaborative or open layout can subtly lessen perceived demands.
3. Reviewing signage and language

  • Check whether signs in waiting rooms or corridors inadvertently reinforce rigidity (e.g., “No Eating,” “No Headphones”).
  • Where possible, substitute with inclusive language such as “Please be considerate of others” or “Feel free to enjoy snacks or music quietly.”
4. Hospital or office policies

  • Rules and guidelines can be reframed to encourage mutual respect rather than impose absolute authority.
  • For instance, clarify that the aim is to ensure comfort for everyone rather than to restrict certain actions altogether.
By considering how physical layouts and institutional language may be perceived as demands, healthcare and social care professionals can mitigate some of the anxiety that underpins PDA.

Care coordination and consistency

Supporting autistic people with a PDA profile often requires teamwork between professionals, services, and settings. Studies show that consistent communication and shared strategies help prevent misunderstandings, reduce stress for the person, and improve overall outcomes (Cage & Troxell-Whitman, 2019; Kildahl et al., 2021). This section outlines how care coordination and consistency can be approached at various levels-from the single healthcare worker to the entire trust.

1. Clear centralised documentation

When one professional discovers an effective approach-such as using email instead of phone calls or avoiding direct instructions-that is helpful information for everyone working with a person. Sharing it can spare the individual from having to explain themselves repeatedly, which can increase anxiety. You might want to use your shared electronic platform to highlight known triggers, coping strategies, and communication preferences.

2. Maintaining consistency

PDAers often react strongly to abrupt changes in communication style or to conflicting instructions from different professionals. Consistent approaches help them trust the system and reduce the drive to avoid or resist care (Kildahl et al., 2021). It’s helpful at team meetings or handovers, to make sure staff are updated on the agreed-upon communication preferences, boundaries, and successful strategies. You might agree to as a matter of policy for everyone to avoid using authoritative language (“You must…”) and opt instead for collaborative phrasing (“Would it help if we…?”).
Supporting autistic people with a PDA profile often requires teamwork between professionals, services, and settings. Studies show that consistent communication and shared strategies help prevent misunderstandings, reduce stress for the person, and improve overall outcomes (Cage & Troxell-Whitman, 2019; Kildahl et al., 2021). This section outlines how care coordination and consistency can be approached at various levels-from the single healthcare worker to the entire trust.

1. Clear centralised documentation

When one professional discovers an effective approach-such as using email instead of phone calls or avoiding direct instructions-that is helpful information for everyone working with a person. Sharing it can spare the individual from having to explain themselves repeatedly, which can increase anxiety. You might want to use your shared electronic platform to highlight known triggers, coping strategies, and communication preferences.

2. Maintaining consistency

PDAers often react strongly to abrupt changes in communication style or to conflicting instructions from different professionals. Consistent approaches help them trust the system and reduce the drive to avoid or resist care (Kildahl et al., 2021). It’s helpful at team meetings or handovers, to make sure staff are updated on the agreed-upon communication preferences, boundaries, and successful strategies. You might agree to as a matter of policy for everyone to avoid using authoritative language (“You must…”) and opt instead for collaborative phrasing (“Would it help if we…?”).

3. Respecting boundaries:

In some trusts, professionals create a “consistency statement” in the person’s file. This lists the main do’s and don’ts for that person so new staff quickly understand that persons boundaries. If the person has asked for email contact only, for example, it is important all staff abide by this, instead of calling or dropping by unannounced.

By creating clear records, agreeing on consistent approaches, and respecting PDAers preferences, staff can reduce anxiety triggers and foster a sense of safety. Even in busy or pressured environments, these steps help build trust over time, making a real difference to PDAers navigating multiple services.
3. Respecting boundaries:

In some trusts, professionals create a “consistency statement” in the person’s file. This lists the main do’s and don’ts for that person so new staff quickly understand that persons boundaries. If the person has asked for email contact only, for example, it is important all staff abide by this, instead of calling or dropping by unannounced.

By creating clear records, agreeing on consistent approaches, and respecting PDAers preferences, staff can reduce anxiety triggers and foster a sense of safety. Even in busy or pressured environments, these steps help build trust over time, making a real difference to PDAers navigating multiple services.