What do autistic people want from health services?

Autism affects how someone communicates, interacts, and processes the world around them. Around one in 100 people in the UK are autistic, though the true figure may be higher.

Autistic people are significantly more likely to experience poor health outcomes: life expectancy remains lower than the general population, and autistic adults are more likely to die from preventable causes.

The Oliver McGowan Mandatory Training in Learning Disability and Autism, introduced in 2021, aims to improve understanding among health and social care staff. Trial evidence shows staff value it, but feedback we’ve heard suggests many autistic people still face communication misunderstandings and lack of consistent adjustments from services.

England’s current national autism strategy runs to July 2026. Despite a House of Lords committee calling for the next strategy to be ready when this ends, no new strategy or publication timetable had been announced at time of writing. 

An independent review into prevalence and support for mental health conditions, ADHD and autism is underway, though some autism organisations have raised concerns about how the review frames rising diagnoses. The Government also recently called for evidence to inform a new cross-government mental health strategy for England, including a focus on autistic people and people with ADHD. 

These important opportunities to improve care will only succeed if autistic people's experiences are centred and listened to. We reviewed over 400 stories people told Healthwatch England and local Healthwatch in March and April 2026, finding four key things autistic people want from health services:

• Staff who recognise and understand autistic needs
• Accessible appointments and environments
• Reasonable adjustments that follow people across services
• Accessible autism-friendly mental health support

Do staff recognise and understand autistic needs?

People told us autistic needs are often missed or misunderstood. Staff often assessed need through neurotypical expectations, misreading the way autistic people communicate pain, distress or overwhelm, and thus overlooking need.

“My way of communicating – alexithymia, flat tone, lack of empathy – are often perceived as being depressed, someone who is seeking attention, or just being rude. I shouldn’t have to try to make myself appear ‘normal’ to be believed.” — Story shared with Healthwatch Wirral

In some cases, people felt this led to care being withheld:

“He said he would not help me because I didn't seem like I wanted help… He interpreted my autism and inability to communicate properly as that I did not want any help or support, even though I made that appointment to get help.” — Story shared with Healthwatch England

One parent described a paediatric doctor repeatedly asking their autistic son to make eye contact and speak up, with no recognition that this was making the appointment harder for him.

People also described staff relying on stereotypes about autism. People were told “you don't look autistic”, that they did not need a diagnosis because they were a “functional adult”, or simply to “get a grip”. 

The consequences of a lack of awareness can be serious. One parent told us their son's normal autistic responses were interpreted as anxiety during a stay in a mental health unit, leading to medication they believed caused him additional harm. 

Is there enough flexibility to make care accessible?

Autistic people told us communication barriers affected their care at every stage, from making appointments to understanding what happened during consultations. Research reflects this: a 2022 BMJ study found 80% of autistic adults reported difficulty visiting a GP. 

People described GP surgeries that didn’t accept messages or emails, leaving some unable to make contact at all, particularly those with auditory processing difficulties. One person described trying to explain themselves over the phone as “excruciating”. 

Further barriers often followed: consultants speaking too quickly, appointments being too short for autistic people to feel settled and explain their concerns, and open questions such as “What do you want?” being difficult to answer under pressure. People also described being expected to make on-the-spot decisions, without enough time to process information. 

Lack of clear explanation before procedures, tests or medication was a recurring concern. One parent described their autistic daughter’s A&E admission for seizures:

“She didn’t understand what was happening. She was frightened which made her panic so they kept telling her to calm down. This isn’t how you make someone feel safer and calm.” — Story shared with Healthwatch Kent

Sensory environments also caused issues. Busy waiting rooms, noise, bright lighting and delays caused significant distress, sometimes leading to shutdown, panic or people leaving without being seen. In more serious cases, people said this distress was not met with care:

“[I] explained she was autistic and dissociating due to noise and pain and ignored. When the staff could not get a response when calling for a patient, a Healthcare assistant came and screamed the name, laughing at people jumping.” —  Story shared with Healthwatch England

Clearer information, more time to process decisions, and quieter or more predictable environments would make care less distressing and more accessible. 

Do people get their reasonable adjustments across services?

Under the Equality Act, health services must make reasonable adjustments to ensure disabled people can access care. However, many people told us these adjustments weren’t provided consistently. Some were withdrawn unexpectedly, treated as optional, or refused outright. 

“I repeatedly have to restate and renegotiate the same reasonable adjustments, despite my needs already being documented…” — Story shared with Healthwatch York

Autism health passports – designed to help patients communicate their needs – highlight this inconsistency. One person described the distress of disclosing their needs only for the passport not to be used consistently:

“…it feels somehow worse having put myself out there and it counting for virtually nothing.” — Story shared with Healthwatch England

But even small changes made a significant positive difference. One person described a dentist turning off the radio, speaking quietly, and talking them through treatment.

“I was able to complete my visit because of her understanding and the adjustments she made.” — Story shared with Healthwatch England

Is autism-informed mental health support available?

Around eight in ten autistic adults experience mental health challenges in their lifetime. 

But people told us accessing the right mental health support was difficult. While some people described mental health difficulties being dismissed or explained away as “just autism”, others were frustrated that services failed to understand how autism shapes mental health:

“…there has been no understanding of the correlation of autism and mental health… autism is treated as a separate condition rather than something that affects and impacts every area of my life and health.” — Story shared with Healthwatch East Riding of Yorkshire

For families, long waits for CAMHS and autism assessments meant some children reached crisis before support arrived. People also described being bounced between services, with responsibility for diagnosis and care passed between agencies.

Families that reached crisis support said autistic distress was sometimes treated as behavioural rather than a mental health need.

“…the CAMHS worker refused to speak with me and said it was behavioural problems and not mental health. Again child shut down and unable to communicate and in great distress, he was suicidal.” — Story shared with Healthwatch England

People identified the period immediately after diagnosis as a particular ‘cliff edge’ for people’s mental health. Over half the 128 recently diagnosed adults Healthwatch Hertfordshire spoke to received no information after diagnosis, leaving many to navigate support alone.

What needs to change?

A 2022 study in the BMJ concluded, ‘adjustments for communication needs are as necessary for autistic people as ramps are for wheelchair users’. But these stories show how far services have to go in recognising and acting on this.

Health services are under pressure and resources are stretched. That makes it more important to design care around people’s needs from the start, not only during appointments, but also when it comes to waiting for assessment or diagnosis or practical help such as signposting.

Reasonable adjustments and autism-informed care are not ‘nice to have’, but fundamental to safe, accessible care. The upcoming national strategies are a chance to turn autistic people’s experiences into practical change.