Background:
With the number of people seeking autism and ADHD (Attention Deficit Hyperactivity Disorder) assessments in the UK increasing, and diagnostic services unable to meet the demand, waiting lists are growing rapidly. The diagnostic delays can have serious impacts on mental health, social wellbeing, and overall quality of life.
For the assessment crisis to be addressed, we believe the government must better understand the needs and experiences of autistic people. To help us inform them, we designed a draft survey to explore experiences of people from the UK seeking an assessment for autism and/or ADHD from 2014 onwards.
How this work empowered people to make more of a difference:
Network members were able to help shape a survey that will gather important information about lived experiences, barriers, and support needs of people with experiences seeking an autism and/or ADHD diagnosis in the UK. By reviewing the draft survey, network members were able to tell us whether it captured their assessment experience, whether anything was missing, and whether we were asking questions in a clear way, helping us make sure the survey accounts for as many experiences as possible before sharing the final survey with thousands of people.
We, Autism Action, will use information from the final survey to help inform the Government about the assessment crisis and why action is needed now. We will also use the information to help inform the government’s upcoming autism strategy and broader national policy decisions regarding ADHD.
What did we ask people to do?
We emailed UK members of the Community Network (at that time 920 people) asking for people who wanted to help shape a survey to register their interest. Even though there was only 1 week to provide feedback, 120 people, with experience seeking an assessment, signed up and we offered everyone the chance to take part.
As well as answering the questions in the survey, we asked network members to let us know if they understood the questions, if there were any response options missing, and if the order of the questions made sense. There was also a text box for network members to tell us what would make the questions better.
How many people took part?
55 network members reviewed the draft survey.
This included: 35 autistic people (29 with a formal diagnosis), 2 people who think they might be autistic, 9 parents/carers/supporters of one or more autistic people, 23 people with ADHD (15 with a formal diagnosis), 10 people who think they might have ADHD, and 7 parents/carers/supporters of one of more people with ADHD (these groups overlap).
To make sure the whole survey was reviewed, we asked people to complete the survey for a certain experience – such as having had an autism assessment via the NHS, or seeking one for a child – this meant some people didn’t review the survey for their own experience.
How we used suggestions/responses:
-  Throughout the survey, we’ve tried to reflect more people’s experiences of seeking an assessment. For example:
- To account for some people being in the middle of an assessment, we added a question to ask what stage an assessment was at.
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- We have also included more guidance for some of the questions. Such as:
- How to answer the question that asks where someone is in the assessment journey if they have tried to seek an assessment more than once.
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- Based on direct suggestions, throughout the survey we added more answers to choose from. For example:
- We added an ‘inconclusive’ answer when we asked about the outcome of an assessment.
- For the questions about daily living activities, we added an answer of ‘personal safety (such as keeping yourself and your belongings safe, locking doors, remembering items)’.
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- We have made a clearer distinction between physical health difficulties and daily life difficulties.
- Originally, we had ‘sleeping’, ‘exercising’, and ‘eating’ as answers for the physical health difficulties. Based on feedback, we moved these answers to the questions about daily life difficulties.
- From the suggestions we got, we added a wider range of answers to physical health difficulties, e.g. ‘joint hypermobility or physical mobility issues’, ‘digestive or gastrointestinal issues’, and ‘health issues or body changes linked to hormones’).
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- Throughout the survey, we added text to explain that the survey was designed to include many different experiences, which meant some questions may have felt similar or repeated. This was to address several comments about the survey seeming repetitive.
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- Based on direct suggestions, some of the wording has been changed at the beginning of the survey. For example:
- We changed ‘diagnosis in the UK’ to ‘assessments in the UK’ as it was noted that people don’t know what the outcome of the assessment will be – this change was made throughout the survey.
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- Throughout the survey, we corrected a few grammatical errors/typos that were identified and, where possible, we changed the settings so that questions were shown based on previous responses.
To help us review the survey, we also asked three questions after each section of questions. We found that for every section of questions, at least 95% of people who responded understood the questions and at least 96% of people who responded thought the order of the questions made sense.
What’s next?
The survey was launched on Monday 13th July 2026. Once a neurodiverse team have reviewed the findings, we will update network members about the key findings and how they will be used to help inform the Government.
