Health & social care

PDA rarely exists in isolation. Many PDAers will have more than one diagnosis. This could be something like ADHD -or anxiety disorders, obsessive-compulsive disorders (OCD), or PTSD. They might also be experiencing chronic stress, social isolation, or trauma.

In some cases, there is a risk of diagnostic overshadowing. This describes when everything someone is experiencing is attributed to one cause, when in fact there are more. For example, a PDAer might also be experiencing:

• Undiagnosed depression or anxiety. A person’s reluctance to engage may be partly driven by underlying low mood, panic attacks, or intrusive thoughts.
• Trauma responses. Previous adverse life events could still be having an impact. PTSD symptoms might intensify the urge to evade demands.
• Socioeconomic pressures. Things like unemployment, housing insecurity, or social isolation can create additional barriers. This can make it difficult to access treatment or support.

Remembering that PDA characteristics exist alongside other challenges helps professionals tailor their approach. Recognising overlapping challenges increases the likelihood of your support being effective

Variability in Engagement

One of the most striking features of PDA in a clinical setting is the unpredictability of the child’s presentation. On some days, the child may refuse to attend the appointment altogether. If they do arrive, they might be unable or unwilling to get out of the car or enter the building. Even when physically present in the room, they may:

• Refuse to leave their parent or carer’s side
• Be silent, withdrawn, or unable to engage with questions or activities
• Alternatively, they may be highly articulate and eager to engage, leading wide-ranging conversations or even initiating philosophical discussions

This variability should not be interpreted as manipulative or oppositional behaviour. As Raelene Dundon, educational and developmental psychologist, points out, “What may look like non-compliance is more often a panic-driven attempt to preserve a sense of autonomy and safety.” Recognising this helps to reframe the child’s behaviour in compassionate and constructive terms.

Control and Avoidance Dynamics

PDAer may attempt to control the therapeutic environment to reduce their anxiety. This can manifest in many ways:

• Directing the clinician on what they should be doing
• Interrupting or preventing parents from discussing challenges
• Refusing to engage unless allowed to choose the location or context-for example, working only under a table or in a specific part of the room

They may also use a variety of avoidance strategies, often framed as plausible excuses:

“I’m too tired,” “I am doing this now, but we can do yours next time…”

Libby Hill, speech and language therapist, highlights the importance of flexibility in her work with children: “Working with PDA children means needing to leave your ego at the door. Go with the flow, focus on the big picture, and be uber-flexible.”

For autistic people with a PDA profile, traditional support approaches can often cause more harm than good. Things like firm routines and hierarchical relationships can increase anxiety and reduce trust.

For professionals, the right mindset is an important first step in helping manage the anxiety and resistance demands can create. Focusing on understanding, compassion, and co-regulation rather than control or compliance is important. It’s about more than tactics; it’s a philosophy that will help you choose the right approach at the right time. Understanding that stress caused by demands can impact on every area of a PDAers life is a good start. As is knowing that this anxiety gets in the way of being able to do things to keep themselves safe and happy – and that this is not a choice.

As a professional working within a system, there may be limitations in the changes you can influence about how your service runs. But anyone can work to build values into the relationships they have with people they support.

These are three fundamental values that will help you work effectively with PDAers:

1. Trust
Consistency, warmth, and honesty are key. Treating anxious behaviour as communication (rather than defiance) builds security. When PDAers trust that they’re safe, anxiety subsides, and daily tasks become more manageable.

2. Equity
Relationships grounded in shared power reduce anxiety. It’s about letting go of control, listening deeply, and negotiating decisions. This approach reassures individuals that you respect their autonomy, reducing tension and the urge to avoid.

3. Compassion
Recognize distressed behaviour as an anxiety response. This mindset shift can be difficult, but viewing meltdowns or refusal through a compassionate lens fosters more effective engagement.

PDA Society’s PANDA mnemonic outlines ways to introduce the kinds of flexible approaches that tend to help. These aren’t separate strategies to apply one by one but overlapping ideas that support each other.

The letters stand for:

• P – Prioritise and Compromise
• A – Anxiety Management
• N – Negotiation and Collaboration
• D – Disguise and Manage Demands
• A – Adaptation

It’s helpful to think of PANDA not as a checklist, but as a gentle guide – especially helpful if you’re new to PDA support. The real work happens through connection, curiosity and trial and error.

“Having a big toolkit means you can be more adaptable in the moment.”

You can find our guide to PDA approaches for everyone here. It covers the fundamentals that will help you support PDAers you come across. The rest of the information in this guide is healthcare specific.

Moving away from traditional methods-where authority figures give orders and expect compliance-can be hard in health and social care. Staff shortages, strict protocols, and a culture of deferring to professional expertise can send a message that people must “do as they’re told.” This can be especially difficult for individuals with PDA, who feel high anxiety about demands.

Reasons mindset change could be difficult include:

• Resource pressures and strict protocols.
  Many services have rigid schedules and standardized treatment plans. Staff may feel they must push ahead without flexibility. But when a PDAer is anxious or uncertain about giving consent, rigid protocols can worsen resistance and harm trust. Spending time building rapport and adjusting approaches may seem costly at first. In the long run, it prevents missed appointments, stops crises from growing, and improves outcomes.
• Assumed compliance.
  Many services assume that people needing help will obey instructions. There is also an expectation that parents or carers will enforce this compliance. Yet for PDAers, forcing them to comply fails to ease the anxiety driving their avoidance. It can also damage the therapeutic relationship. In social care, it can confirm fears that professionals use power without listening or empathy.
• Shifting perspectives on parenting.
  Families of PDAers are often blamed for being “lax” or “permissive” when they choose gentle, cooperative approaches. But Luke Clements warns that parent-blame can hide problems in the system. He points out that professionals sometimes underestimate how hard things are for families. As a result, they judge parents and weaken the partnership needed for effective support. With a PDA profile, less rigid and more inventive parenting is not just a choice; it helps lower anxiety and keep connections strong.

“When professionals assume poor parenting rather than acknowledging systemic limitations, the real needs of the child are overlooked, and families can be unjustly blamed.” -Adapted from Luke Clements’ discussions on institutional bias

For PDAers, “good parenting” might look very different from the usual. Parents may use unusual routines, negotiate boundaries, and offer a lot of freedom. While this can clash with older ideas about “firm authority,” it often reduces stress and supports the child’s wellbeing.

Practical suggestions for changing mindsets include:

• Reflecting on authority.
  Encouraging team discussions about who holds power and why. Ask if your protocols can allow more flexibility.
• Acknowledging pressures.
  Recognising that staff and resources are limited. Brainstorm creative ways-like shorter appointment slots or remote options-to meet PDAers’ needs.
• Promoting empathy.
  See anxiety, not defiance. Collaborative approaches reduce stress for both individuals and systems.
• Respect parental expertise.
  Parents adjusting their style for a PDA child’s needs are not “failing.” Invite their insights to shape support plans instead of blaming them.

Moving to a mindset which centers a respect for each person’s anxiety, autonomy, and lived experience can take time. Yet this shift fosters true engagement, lessens stress for everyone, and honours shared decision-making in health and social care.

It is natural to assume people want to be “healthy” or “safe,” yet these concepts may not motivate someone with a PDA profile. Instead, consider motivations tied to a person’s special interests, immediate goals, or personal values by:

• Asking about interests and goals:
  A PDAer might be more invested in building the strength to climb stairs for a favourite view or developing stamina for a specific activity than in meeting conventional health targets.
• Avoiding generic health language:
  Messaging like “This will keep you safe” or “You need this to be well” can sound hollow if they don’t align with the person’s current priorities.
• Linking interventions to tangible outcomes:
  If treatment enables them to practise their special interest or pursue a particular objective (e.g., running a marathon, painting, or exploring the outdoors), highlight that connection.
• Collaborating on motivation:
  Explore ways to incorporate the individual’s passions into appointments or care routines. For instance, discussing how improved mobility might allow more time for a beloved hobby can be more compelling than a vague mention of “better health.”

By aligning care with personally relevant goals, professionals reduce the sense of imposed demands and create a shared purpose that the PDAer can genuinely support. This shift from abstract health imperatives to tangible, interest-based motivations often help lower anxiety and fosters more cooperative engagement.

Many PDAers justifiably fear interactions with professionals because of past negative experiences or the inherent demands placed upon them-such as enduring painful treatments or fearing life-altering decisions made by others. This anxiety is not necessarily irrational; it may be entirely logical when viewed from their perspective.

For phobias or fears considered irrational, a structured exposure approach is considered the standard of care and can sometimes reduce anxiety-provided there is genuine consent, a gradual plan, and a motivation to overcome the fear. However, PDAers in healthcare or social care contexts often experience anxiety grounded in real potential distress: uncomfortable procedures, invasive tests, or perceived threats to autonomy – this means exposure is unlikely to be effective.

If professionals push exposure without addressing the individual’s actual safety concerns-especially when they are already outside their ‘window of tolerance’-this can escalate fear and even cause trauma. More affective approaches might be:

• Acknowledging the reality of the fear: Validating that healthcare procedures can be painful or that social services have authority. Recognizing the legitimacy of worry can defuse tension.
• Offering transparency: Clearly explaining what might happen during treatments or meetings and allow plenty of time for processing.
• Collaborative planning: Involving the PDA individual (and their family, if relevant) in deciding how to approach appointments. This can include scheduling at quieter times or splitting longer procedures into multiple shorter visits.
• Use alternatives to direct exposure: Instead of focusing on ‘fixing’ the fear, professionals can reduce triggers-for example, by providing less intrusive spaces to wait in or use coping tools (e.g., headphones, fidget items).
• Offering choice where possible: Reinforce the idea that they have some measure of control. This could be choosing how to enter a building or where to sit. Such small but significant decisions can prevent meltdown or withdrawal.

In essence, while exposure-based strategies often target ‘unfounded’ phobias, fear of healthcare or social care interventions may be perfectly rational for PDAers. By reframing the goal from “fixing the fear” to “respecting legitimate anxieties and accommodating them,” professionals can create safer, more effective environments for assessment, treatment, and ongoing support.

PDAers may find structured treatment regimens, strict timetables, or lengthy consent processes especially demanding. Their avoidance often stems from anxiety over perceived loss of control or an inability to process choices quickly. Professionals can better support them by:

• Explaining why demands exist:
  For time-sensitive interventions-like fast-progressing cancers or urgent social care measures-clarify that this urgency isn’t arbitrary. Emphasize the clinical or legal rationale, citing the ‘higher power’ driving the timeline. For example, “I know you’d prefer more time to decide between chemotherapy and radiotherapy. However, if we wait beyond next Monday, the tumour may grow beyond the stage where these options are as effective.”
• Providing options and evidence:
  Even if there are narrow timeframes, present any viable alternatives and associated evidence. For instance, “You can choose between an in-home care assistant starting tomorrow or waiting until next week-but here’s the risk factor increase if we delay.” This level of transparency can lessen anxiety by clarifying that the constraints are grounded in external facts, not arbitrary demands.
• Offering a shared decision approach:
  Where possible, co-create a plan within the available window. Rather than imposing, invite them to discuss how to make the process feel safer or more manageable-e.g., scheduling partial sessions, enlisting a trusted advocate, or enabling short breaks.
• Acknowledge the loss of flexibility:
  Express empathy for their wish to reflect on big decisions. Recognize that not being able to offer extended thinking time can be distressing. Explaining constraints candidly- “I wish we had more leeway, but we must prioritize your immediate safety due to the legislation around significant harm”-helps them grasp the logic behind swift action.
• Validate anxiety:
  Affirm that fear around rushed processes are understandable. By showing you respect their perspective, you can reinforce that the external urgency arises from clinical or legal frameworks, not from a desire to override their autonomy.

Even limited choices, clearly explained, reduce feelings of being ‘forced’ into compliance and help sustain trust-particularly when lifesaving or legally mandated interventions are at stake.

Research in paediatric wards found that when nurses and clinicians use coregulation techniques-speaking softly, reflecting a child’s feelings, using comforting touch-children show reduced procedural anxiety and improved cooperation (Tiedeman, M. E., & Clatworthy, S. 1990).

Co-regulation involves matching and supporting a PDAer’s emotional state, so they feel safe enough to engage. It goes beyond simply providing information, requiring the practitioner to tune in, respond empathically, and help the individual return to their ‘window of tolerance.’ This is especially relevant during potentially stressful healthcare encounters.

Empathic, attuned communication from staff has been linked to better patient satisfaction, greater trust, and improved adherence to treatment. In social care contexts (e.g., disability teams, safeguarding, mental health support), workers often co-regulate by validating distress, allowing time for emotional processing, and gently guiding service users through complex decisions or transitions. (Menschner, C., & Maul, A. 2016).

Practical ways to implement this in your work might include:

1. Commenting on observed cues: Noticing small signs of anxiety or restlessness (e.g., fidgeting, pacing). A neutral statement like, “I see you might be feeling unsettled-would it help to take a moment?” acknowledges their discomfort without imposing a demand.

2.Encouraging stimming: If a PDAer uses hand flapping, rocking, or another form of stimming for self-regulation, reassure them that it’s acceptable. Clinicians or social workers can also model relaxed posture or gentle movements to signal calm.

3. Sharing interests: Actively asking about the individual’s hobbies or passions before or during appointments. Take time to learn enough about these topics to engage authentically-this can lower anxiety and shift the dynamic away from “formal authority” toward mutual respect.

4. Modelling calm and curiosity: Slowing your speech, breathing evenly, and showing genuine curiosity in their perspective. Overly formal or rushed demeanours can elevate stress for a PDAer. A calm, compassionate presence signals that they have space to express themselves.

5. Offering verbal reassurance: Using soothing tones: “It is okay to say if this is too much right now.” This type of gentle permission helps a PDAer feel they have real choice, reducing the sense of confrontation or hierarchy.

Proactive co-regulation encourages collaboration over compliance, helps diffuse escalating tension, and ultimately builds trust. By openly observing and validating emotional cues, encouraging stimming, and learning about personal interests, professionals can create conditions where a PDAer feels comfortable enough to engage in care decisions.

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.

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.

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.