First appointments/ meetings

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.” Adding a photo can be really helpful as can asking what the person you’re visiting would like to know about you before you visit.
• Purpose of the meeting – Sharing the main goal in simple terms. For instance,“We’re meeting to see what’s working well and isn’t so we can help better,”or “We need 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 (a live map link can be helpful). 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, explain where it is.
• 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 that they can bring someone they trust with them.
• Decision Points- Noting any important choices they might face, like changes to a care plan. Explaining how they can share their views.

• Asking open questions such as,“Is there anything we can do to make this meeting 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.

• 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).

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:

• Providing more than one chair in an office 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 social worker has multiple seating options.

• Sitting 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.

• 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.”

• 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.

1. Ventral Vagal (Green Zone): This ‘safe and social’ state is where people can engage meaningfully, reflect on information, and cooperate in care. For PDAers, achieving this state often requires a calm environment, empathetic communication, and minimal pressure.

2. Sympathetic Activation (Fight or Flight): Under threat, energy surges-leading to agitation or avoidance. A small request can feel monumental. If a PDAer shows distress or irritability, it may indicate sympathetic activation, and professionals may find it helpful to adjust demands, slow the pace, and offer reassurance.

3. Dorsal Vagal (Freeze, Fawn, or Shutdown): When stress is overwhelming, some PDAers may ‘shut down,’ become non-communicative, or appear passive. They may seem indifferent, but in fact are too anxious to engage. Here, reducing demands and offering choices without pressure is critical.

This aligns with Dan Siegel’s Window of Tolerance model, where an individual’s capacity for coping shrinks when anxiety spikes. Polyvagal theory shows how, moment by moment, the nervous system scans for safety or threat-affecting cooperation, communication, and willingness to attempt tasks.

Things that might be helpful in your daily practice:

• Observing autonomic states:
  Recognising signs of fight/flight (restlessness, tension, agitation) or freeze (minimal response, seeming ‘shutdown’). Tailoring interventions-reducing pressure, pausing demanding tasks, offering an exit strategy.
• Co-regulation:
  Using a warm tone of voice, relaxed body language, and genuine empathy. An anxious professional often escalates a PDAer’s anxiety, while a calm manner can help restore safety.
• Incremental Demands:
  Offering small steps or breaking procedures into manageable chunks. This prevents rapid shifts into fight/flight/freeze.
• Environment and Relationships:
  A supportive environment, combined with validating relationships, can expand a PDAer’s ‘window of tolerance.’

• 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 wellbeing 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 an intervention 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 meetings and activities. 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.”

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 home vists, 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:

1. Acknowledging the reality of the fear: Validating that social services have authority. Recognizing the legitimacy of worry can defuse tension.

2. Offering transparency: Clearly explaining what might happen during meetings, and allowing plenty of time for processing.

3. Collaborative planning: Involving the PDA individual (and their family, if relevant) in deciding how to approach things like home visits. This can include scheduling at less stressful times or agreeing that they’ll take place in particular rooms.

4. 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).

5. 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 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, and ongoing support.

• Explaining why demands exist: For time-sensitive interventions-like urgent social care measures-clarify that this urgency isn’t arbitrary. Emphasize the legal rationale, citing the ‘higher power’ driving the timeline. For example,
  “I know you’d prefer more time to decide between having homecare or moving to supported accomodation. However, apartments at the place you prefer are in demand and if we don’t choose by Monday it’ll be offered to someone else.”
• 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 is understandable. By showing you respect their perspective, you can reinforce that the external urgency arises from concern for their safety, not from a desire to override their autonomy.

Empathic, attuned communication from staff has been linked to better satisfaction, greater trust, and improved adherence to support. 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 and Maul (2016) emphasise that trauma-informed practices such as active listening, gentle pacing, and emotion validation support not only individual well-being but reduce escalation risk and improve service outcomes

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. Support workers 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. 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 demeanors 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.

Luke Clements (2020) has described how families of neurodivergent children, particularly those with PDA profiles, are often wrongly perceived as permissive or neglectful, when they are, in fact, using inventive and responsive approaches that reduce anxiety and support the child’s well-being.

Professionals may lean toward initiating safeguarding procedures or seeking a Deprivation of Liberty Safeguards (DoLS) assessment when they see an individual avoiding basic self-care, withdrawing from support, or resisting structured intervention. These reactions can understandably raise red flags, especially when professionals feel pressure to act swiftly to prevent risk. In these moments, the default response may be to intervene quickly and decisively-often through formal, restrictive measures.

However, understanding PDA offers critical insight into why this behaviour may be occurring. What appears to be refusal or disengagement may instead reflect an individual’s attempt to preserve autonomy and manage overwhelming anxiety. Acting without this insight can result in interventions that heighten the person’s distress and reduce long-term engagement.

Professionals should reflect on the trajectory of their intervention: will it foster future cooperation, or risk reinforcing distrust and avoidance? For example, enforcing DoLS without attempting voluntary agreements may secure short-term compliance but may also damage relationships in ways that are difficult to repair.

That said, it’s important to acknowledge that in some circumstances-particularly where there is significant, immediate risk-short-term distress may be unavoidable in pursuit of long-term safety. If a person is at risk of exploitation, self-harm, or life-threatening harm, then protective measures must be taken, even if they are distressing in the moment. What matters is that these actions are taken transparently, with as much empathy and autonomy as possible, and that professionals return afterwards to rebuild trust and repair the relationship.

Ultimately, balancing risk in PDA contexts involves critical reflection, shared decision-making, and professional curiosity. It may mean proceeding more slowly, creating space for understanding, or adjusting traditional timelines. Equally, it may mean recognising when the urgency of harm outweighs the benefits of gradual engagement. A PDA-informed lens does not remove the need for decisive action-it simply ensures that action is more likely to lead to lasting safety and support.

The home is often the only environment where a PDAer can manage their anxiety and regulate their nervous system without constant external demands. It provides predictability, safety, and control-three essential components for reducing distress in individuals with a PDA profile. As such, professionals must tread lightly when entering this space.

Home visits can be extremely difficult for someone with PDA. The presence of professionals may feel like an imposition or a challenge to autonomy, particularly if unannounced. Even scheduled visits can trigger anxiety due to the anticipation of interaction, fear of being judged, or worry that their environment will be scrutinised. These reactions are not about defiance but reflect deeply rooted needs to control one’s surroundings in order to feel emotionally safe.

Wherever possible, choice and flexibility should be built into the process. Professionals can:

• Offer options around the time and date of the visit.
• Agree in advance who will attend and what will be discussed.
• Allow meetings to take place in alternative settings or through digital platforms.
• Provide visual or written overviews of the purpose of the visit beforehand.

In cases where home visits are unavoidable and must happen without warning-such as in urgent safeguarding circumstances-it’s vital to acknowledge the impact this may have. Practitioners should be transparent: explain why the visit is occurring in this way, validate the likely distress it causes, and offer a follow-up process that allows the individual to regain a sense of control. This reflects a trauma-informed approach and can help preserve trust over the long term.

Multidisciplinary collaboration can reduce the frequency and intensity of home visits. By coordinating efforts, agencies can combine checks and updates into a single contact, reducing repetition. A shared plan between services can identify which professional has the strongest relationship with the person and assign that individual to lead engagement efforts. This supports continuity, limits perceived intrusion, and affirms the person’s right to feel safe in their own space.

These approaches are consistent with trauma-informed practice and supported by findings such as those from Cage and Troxell-Whitman (2019), who note that inflexible systems and ambiguous administrative interactions are key reasons why autistic individuals disengage from services.

Additionally, flexible engagement, trusted professionals, and respect for household boundaries align with research on trauma-informed care, which highlights predictability and personal autonomy as essential components in building trust and reducing distress.

Professionals working across agencies should collaborate to minimise unnecessary duplication and streamline visits, helping to preserve the home as a regulated and emotionally safe environment.

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.