Why Accessing Healthcare Can Be So Difficult for ADHD and Autistic People

By Robert Rackley MSc MIACP
Neurodivergent Psychotherapist | ADHD & Autism Specialist

Accessing healthcare requires skills that may be hardest to access when you are unwell.

You may need to recognise that something is wrong.

Decide whether it requires medical attention.

Identify the correct service.

Make a telephone call.

Explain your symptoms.

Complete forms.

Remember previous medical information.

Travel to an unfamiliar place.

Arrive at a specific time.

Wait in a busy environment.

Process complex information.

Ask questions.

Organise medication, referrals or further appointments.

Each step requires physical, cognitive, emotional and executive functioning capacity.

For many ADHD and autistic people, these tasks can already be demanding.

When the person is unwell, in pain, anxious, sleep-deprived or emotionally overwhelmed, the skills required to navigate healthcare may become even harder to access.

The person may need help.

The process of obtaining that help may require exactly the abilities that are currently least available.

Access is more than having a healthcare service

Healthcare may technically be available while remaining difficult to access.

A person might live near a GP practice.

They may be entitled to attend.

An appointment may eventually be available.

But several barriers may stand between recognising the need for help and receiving it.

Access includes whether the person can:

• Understand where to go
• Work out how to make contact
• Use the available booking system
• Communicate what is happening
• Manage the appointment time
• Travel to the service
• Tolerate the environment
• Participate in the consultation
• Understand the information provided
• Complete the next steps afterwards

If any part of that chain becomes inaccessible, the person may not receive the care they need.

This is why healthcare accessibility cannot be measured only by whether a service exists.

It must also consider what a person needs to do to use it.

Recognising that something is wrong

The first step in seeking healthcare is usually recognising that something has changed.

This is not always straightforward.

Some ADHD and autistic people experience interoceptive differences. Interoception is the ability to notice and interpret signals from within the body, including:

• Hunger
• Thirst
• Pain
• Temperature
• Fatigue
• Nausea
• Muscle tension
• The need to use the toilet
• Changes in breathing or heart rate

A person may notice that their body feels different without understanding what the sensation means.

They may realise they are unwell only when the symptoms become severe.

Some people also have difficulty separating physical sensations from anxiety, sensory overload or emotional distress.

They might know:

“Something feels wrong.”

But not know whether they are hungry, overwhelmed, becoming ill or experiencing a panic response.

This can be connected with alexithymia, which may affect a person’s ability to identify and describe emotions and internal experiences. As I discuss in Alexithymia in ADHD and Autism, difficulty naming an experience does not mean the experience is absent.

A person may be genuinely distressed while being unable to explain precisely what is happening.

Deciding whether to seek help

Once a change is noticed, the person must decide what to do.

Questions may include:

• Is this serious?
• Should I wait?
• Do I need a GP?
• Should I contact a pharmacist?
• Is this connected to medication?
• Am I overreacting?
• What if the doctor thinks I am wasting their time?
• What if I cannot explain it properly?
• What if I am dismissed again?

This decision can become overwhelming.

There may be uncertainty, multiple possible services and fear of choosing incorrectly.

For someone experiencing decision fatigue, the lack of one obvious route can delay action. The person may repeatedly think about seeking help without moving any closer to making contact.

Previous experiences can also influence the decision.

If the person has previously been dismissed, misunderstood or made to feel dramatic, they may wait until the problem becomes impossible to ignore.

They may feel they need to gather enough evidence to prove that they deserve an appointment.

The delay is not necessarily a sign that the symptoms were unimportant.

It may reflect how difficult the decision felt.

Making the appointment is an executive functioning task

Healthcare services often depend on telephone calls.

For many people, calling a GP practice is an ordinary task.

For an ADHD or autistic person, it may involve several demands at once:

• Remembering to call during limited opening hours
• Interrupting another activity
• Managing anxiety about speaking
• Predicting what questions will be asked
• Explaining the problem quickly
• Processing appointment options
• Writing down information
• Making an immediate decision
• Remembering what was agreed
• Tolerating being placed on hold
• Calling repeatedly if the line is busy

The person may spend hours thinking:

“I need to ring the doctor.”

They may fully understand the importance.

They may still be unable to begin.

This is not always avoidance in the ordinary sense. It may involve executive dysfunction, anxiety, auditory processing demands or difficulty changing from intention into action.

As I explain in Why Transitions Can Be So Difficult for ADHD and Autistic People, knowing what needs to happen next is not the same as being able to initiate the movement towards it.

If the only route into a healthcare service is a telephone call at a particular time, some people will be placed at an immediate disadvantage.

Offering online booking, email, text or a call-back option can make the same service far more accessible.

Explaining symptoms under pressure

A healthcare consultation often requires the person to summarise a complicated experience quickly.

They may need to explain:

• What is happening
• When it started
• How often it occurs
• What makes it better or worse
• Which medication they take
• Their relevant medical history
• How the symptoms affect daily life
• What they are worried about

This information may be difficult to organise even when the person feels well.

During pain, anxiety or sensory overload, working memory and verbal processing can become less reliable.

The person may forget the symptom that caused them to book the appointment.

They may focus on one detail and leave out something significant.

They may answer the exact question asked without realising that the clinician needs additional context.

They may provide a long, detailed explanation because they cannot identify which information is most relevant.

They may become unable to speak clearly when they feel rushed.

A highly articulate person can still struggle to access language under pressure.

This is another example of a spiky profile. Strong verbal ability in one setting does not guarantee easy communication during illness, anxiety or overload.

The person may know exactly what they want to say before the appointment.

Once they enter the room, the words disappear.

Masking can affect what the clinician sees

Many neurodivergent adults have learned to appear calm, polite and capable in professional situations.

They may smile.

Make eye contact.

Use humour.

Minimise distress.

Say they are managing.

Agree with the clinician even when they are confused.

Their external presentation may not reflect their internal state.

A person can be experiencing significant pain or emotional distress while appearing composed.

They may have spent years learning that showing distress leads to judgement, disbelief or embarrassment.

Masking may become particularly automatic around authority figures.

The clinician may see someone who appears calm and conclude that the problem is less severe than described.

The person may leave feeling that they failed to communicate how much they were struggling.

Visible composure should not be treated as proof of wellbeing.

As discussed in Many ADHD and Autistic Adults Have Become So Good at Coping That They Don’t Realise They’re Struggling, the ability to function externally can hide a significant internal cost.

The sensory environment can reduce capacity

Healthcare environments can be sensory-intensive.

A waiting room may include:

• Bright lighting
• Televisions
• Telephones
• People talking
• Children crying
• Strong cleaning-product smells
• Uncomfortable seating
• Close physical proximity
• Unpredictable waiting times
• Medical sounds
• Movement around the room

The person may already be unwell or in pain.

They are then expected to regulate themselves in an unpredictable environment before communicating clearly during the consultation.

By the time they are called, a considerable amount of capacity may already have been used.

Sensory overload can affect:

• Concentration
• Communication
• Emotional regulation
• Decision-making
• Memory
• Pain tolerance
• The ability to remain in the environment

Someone who leaves before being seen may be described as impatient.

Someone who becomes distressed may be viewed as aggressive or difficult.

Someone who stops communicating may appear unwilling to engage.

But the behaviour may reflect a nervous system that has exceeded its processing capacity.

My article on ADHD and sensory overwhelm explains why an apparently small sensory demand can become much harder to manage when combined with stress, fatigue and uncertainty.

Waiting without knowing how long

Uncertainty can be one of the most difficult parts of a healthcare appointment.

The person may have prepared for a specific time.

They may have organised transport, medication, work, food and emotional energy around that plan.

Then they are asked to wait without knowing whether the delay will be ten minutes or two hours.

This can affect people in different ways.

An ADHD person may find it difficult to direct attention towards anything else while waiting.

An autistic person may experience significant anxiety when the expected plan changes.

Someone with chronic pain may have limited physical capacity to remain seated.

A person who has not eaten because of the appointment may become increasingly dysregulated.

Clear information can reduce some of this distress.

Even when an exact time cannot be provided, communication such as “the clinician is approximately 30 minutes behind” gives the person something concrete to work with.

Predictability does not remove the delay.

It can make the delay more manageable.

Processing information during the consultation

A clinician may provide a large amount of important information in a short period.

The person may be told:

• What the clinician thinks is happening
• What tests are needed
• How to take medication
• Which side effects to monitor
• When to seek further help
• Which referral will be made
• What they need to arrange themselves
• When to return

The person may appear to understand.

They may nod and say yes.

Afterwards, they may remember very little.

Auditory processing and working-memory differences can make spoken information particularly difficult to retain. Anxiety further reduces processing capacity.

A person may need:

• Information in writing
• One instruction at a time
• Time to ask questions
• Clear rather than implied language
• A written list of next steps
• Permission to record information
• Another person present
• An opportunity to clarify something later

Providing written information is not unnecessary simply because the person speaks fluently.

Understanding during the conversation does not guarantee that the information will remain accessible afterwards.

Asking questions can feel risky

Healthcare consultations involve a power difference.

The clinician has specialist knowledge, controls limited appointment time and may determine access to medication, tests or referrals.

A neurodivergent patient may worry that asking questions will make them appear:

• Difficult
• Demanding
• Anxious
• Argumentative
• Untrusting
• Too focused on a diagnosis
• As though they obtained information online and think they know better

They may therefore remain silent.

Some people need additional processing time before they know what they want to ask. The question may only become clear after they leave.

Others may have experienced rejection sensitivity or years of being told that they communicate incorrectly. They may monitor the clinician’s tone and facial expression for signs of irritation.

The person may agree to a plan they do not fully understand because the social pressure to end the consultation feels stronger than their ability to ask for clarification.

Accessible healthcare allows questions without treating them as challenges to professional authority.

Previous invalidation can shape future healthcare access

One dismissive encounter can affect whether someone seeks help again.

The person may have previously been told:

“You look fine.”

“It’s probably just anxiety.”

“Everyone forgets things.”

“You’re too young to be this tired.”

“You need to try harder.”

“Your tests are normal.”

Even when a medical explanation is not immediately clear, the way uncertainty is communicated matters.

A person can hear “we have not identified the cause yet” very differently from “nothing is wrong.”

Repeated invalidation can teach the nervous system that healthcare is not emotionally safe.

The person may begin rehearsing every appointment, gathering excessive evidence or delaying contact because they cannot face being dismissed again.

This can connect with the shame many neurodivergent adults already carry. As I explore in ADHD Shame in Adults, years of having genuine difficulties interpreted as character problems can make self-advocacy especially difficult.

The work continues after the appointment

Attending the consultation may only be the beginning.

The person may then need to:

• Collect a prescription
• Begin a medication schedule
• Arrange blood tests
• Contact another service
• Complete referral forms
• Monitor symptoms
• Book a follow-up
• Find old records
• Attend somewhere unfamiliar
• Remember new instructions
• Communicate with an employer
• Make lifestyle changes

Each next step creates another point where healthcare access can break down.

A referral may be discussed but require the patient to make the next call.

A medication may be prescribed but never collected.

A follow-up may be recommended without being booked.

A form may remain unopened because it feels overwhelming.

This may be described as non-compliance.

But the person may fully want the treatment and still struggle with the executive functioning needed to organise it.

The healthcare plan is only effective if the person can access the steps within it.

Being unwell reduces the skills needed to get well

Illness can affect anybody’s concentration, memory and emotional regulation.

For someone already using significant energy to manage executive functioning or sensory processing differences, the reduction in capacity may have a greater practical impact.

When unwell, the person may have less access to:

• Planning
• Organisation
• Task initiation
• Working memory
• Verbal communication
• Emotional regulation
• Decision-making
• Sensory tolerance
• Time management
• Self-advocacy

Yet healthcare may require all of these abilities.

The person is expected to demonstrate organisation while disorganised.

Communicate clearly while overwhelmed.

Remember instructions while cognitively exhausted.

Tolerate uncertainty while frightened.

Advocate for themselves while feeling vulnerable.

This is the central contradiction.

Accessing healthcare requires skills that may be hardest to access when you are unwell.

What can make healthcare more accessible?

Not every adjustment requires additional clinical time or expensive resources.

Small changes can significantly reduce barriers.

Helpful practices may include:

• Providing several ways to book appointments
• Offering text or email reminders
• Allowing patients to submit information in writing
• Giving clear directions before the appointment
• Explaining what will happen during the visit
• Communicating delays
• Providing a quieter place to wait where possible
• Using direct, specific language
• Asking one question at a time
• Allowing additional processing time
• Checking understanding without being patronising
• Providing written next steps
• Allowing a supporter to attend
• Making follow-up arrangements before the patient leaves
• Identifying the best communication method for that individual
• Recording useful accommodations for future appointments

These adjustments benefit many people, not only those with a formal diagnosis.

A patient should not have to disclose everything about their neurodivergence before communication becomes clear and respectful.

Preparing for an appointment

Responsibility for accessibility should not rest entirely with the patient.

However, some practical preparation can reduce the amount that needs to be held in working memory.

Before an appointment, it may help to write down:

• The main reason for attending
• When the problem began
• The most important symptoms
• How daily life is being affected
• Current medication
• Relevant medical history
• Questions to ask
• What outcome or next step needs clarification

The person might begin the consultation by saying:

“I find it difficult to remember everything during appointments, so I have written down the main points.”

They may also ask:

“Could you write down the next steps?”

“Can I have time to think about that?”

“Could you explain that in a different way?”

“What should I do if this gets worse?”

“Who arranges the next appointment?”

“Is there anything I need to do after I leave?”

Bringing a trusted person may help with communication, memory and emotional regulation.

Using support is not evidence that the person cannot understand their own healthcare.

It can allow them to participate more fully.

Missed appointments need curiosity, not immediate judgement

Missed appointments create genuine pressure on healthcare services.

But automatically interpreting non-attendance as a lack of interest may overlook the barriers involved.

The person may have:

• Forgotten despite intending to attend
• Recorded the time incorrectly
• Become overwhelmed by travel
• Been unable to make a necessary telephone call
• Experienced a shutdown
• Misunderstood the instructions
• Been unable to tolerate the waiting environment
• Become paralysed by anxiety
• Lost the reminder
• Been too unwell to organise cancellation

Accountability still matters.

But curiosity provides more useful information than shame.

Asking what prevented attendance may identify a simple adjustment that improves future engagement.

A reminder, written directions, online appointment, quieter time or clearer follow-up process may make the difference between repeated missed appointments and meaningful access.

Accessible care begins before the consultation

Healthcare accessibility is not only about the clinician’s knowledge once the patient reaches the room.

It begins with:

• How appointments are made
• How information is communicated
• How predictable the process feels
• Whether sensory needs are considered
• Whether the person can explain themselves in an accessible way
• Whether the next steps are realistic
• Whether difficulties are met with curiosity or blame

A person should not need to demonstrate their highest level of functioning to prove that they deserve care.

They should not have to communicate perfectly while unwell.

They should not have to reach crisis before their difficulty is believed.

Accessing healthcare requires skills that may be hardest to access when you are unwell.

Understanding that can change the question from:

“Why didn’t this person engage?”

to:

“What made engagement difficult?”

That is where genuinely accessible healthcare begins.

Therapy, Training and Speaking

I provide neurodivergence-affirming therapy for ADHD and autistic adults experiencing executive functioning difficulties, healthcare anxiety, communication barriers, sensory overwhelm, burnout and difficulty advocating for their needs.

My approach combines clinical experience, specialist training and my own lived experience as a neurodivergent psychotherapist. Therapy can help individuals prepare for difficult conversations, understand their needs, reduce shame and develop strategies that make important appointments more manageable.

Sessions are available in person in Limerick and online internationally.

I also provide neurodiversity training, workplace talks and professional CPD for therapists, healthcare professionals, educational settings, workplaces and organisations.

My training for healthcare and mental-health professionals explores executive functioning, masking, sensory processing, communication, burnout and the ways traditional systems can unintentionally create barriers for neurodivergent people.

Organisations seeking a tailored programme can learn more about my group and organisational neurodiversity training.

Robert Rackley MSc MIACP
Neurodivergent Psychotherapist | ADHD & Autism Specialist | Trainer & Speaker