The Individual Is the Expert: Listen Before You Plan Autism Support

An individual with autism is an individual. That should be the starting point of every access conversation. Too often, it is the detail that disappears as soon as the meeting begins.

The person describes a barrier. A professional describes autism. The service describes what it already provides. Somewhere between those three accounts, the original request gets lost.

In Episode 14 of The Laminator, a wheelchair user asks for a ramp and receives a ladder. The committee calls it independence. When an autistic visitor asks for written instructions and a quieter appointment, the same committee offers a confidence workshop. The absurdity is easier to recognise when we can see the ladder.

Physical access gives us familiar examples: a ramp, a lift, a handrail, a walker. These can remove particular barriers. They are not interchangeable, and people with physical disabilities do not all need the same equipment or support. The important principle is that provision must work for the person using it.

That principle applies to autism too. A building can be physically accessible while its booking system, waiting room, communication and routines still prevent someone from using the service.

A diagnosis is not a support plan

There is no single standardised fix that makes every classroom, workplace, clinic or public service accessible to every autistic person. Useful changes can benefit many people. They still need to be checked against the individual’s experience.

One person may want instructions in writing. Another may need them broken into short spoken steps. Someone may need a quieter appointment, time to process a question, a predictable route or support from a trusted person. Those are examples to discuss, not a list to impose.

The National Autistic Society’s guidance makes the same practical point: ask about individual communication preferences and provide ways to participate that suit the person. The first question cannot be only what the service has available. It must also be what makes this service usable for you.

The person is an expert in their own autism

When we say this, we mean that their lived experience is essential knowledge. They know things about their comfort, effort, preferences and distress that a general training session cannot tell us.

Professional knowledge has a place. It can help identify options, investigate a difficulty and put resources behind a request. It earns its value by working with the person’s account, rather than overruling it because it does not fit the expected picture.

It does not matter how many degrees you possess or how full the school’s in-service diary is. Until you have listened to this person, you have not learned what autism means in this person’s day.

An adult who speaks fluently may still need written information or time to respond. A child who completed a task yesterday may need different support today. The question is what made the task possible, what has changed, and what the person is telling us.

Listening must be accessible

Sitting down and listening does not always mean a spoken conversation across a table. A person may communicate through typing, pictures, an AAC device, gestures or another method. They may need questions in advance, shorter discussions, breaks or time to answer later.

A meeting that only accepts quick spoken answers has already decided whose knowledge it will hear.

Families and trusted supporters can bring important knowledge, particularly where a child or a person with substantial communication support needs cannot explain everything in the meeting’s format. Ask who the person wants involved wherever possible. Family knowledge should help us understand the person; it should not erase their preferences or turn their presence into a formality.

We must make room for people whose needs are complex as well as those who can explain themselves easily. Difficulty communicating with a service increases the service’s responsibility to listen.

Listening has to change the plan

A request should lead to a clear response: what will change, who will arrange it, and when the person can try it. If a request cannot be met as proposed, explain the constraint and work together on an alternative. Do not quietly rename a barrier as poor motivation.

Then ask whether the change worked. A support plan needs revision when the person’s experience shows that it is not helping.

Universal design can make environments more flexible from the start. It does not remove the need for individual adjustments. A visual timetable, a quiet room or an autism-friendly sign is useful only when the person can use it in a way that helps.

Put the ego behind you

Close the books for a moment. Put down the prepared answer. Listen to the person, the expert in their own experience, and to the family or supporters whose knowledge helps them be heard.

Ask what is difficult. Ask what helps. Believe that the answer may be different from the one you expected.

Only then can you begin to learn about their autism. Only then can you plan support with them.

Nothing about us without us must describe how decisions are made. It cannot remain a sentence on the wall.

By Elaine Walsh · Autism & Me.

Further reading: National Autistic Society, Accessible information — https://www.autism.org.uk/learn/knowledge-hub/guides-and-resources/accessible-information ; Accessible services — https://www.autism.org.uk/learn/knowledge-hub/guides-and-resources/accessible-service