ADHD and Autism Over-Diagnosis in the UK: Why Documenting Your Lived Experience Matters

The headlines are everywhere. On 9 October 2026, a new government-commissioned review raised concerns about the risk of over-diagnosis and misdiagnosis of ADHD and autism, prompting fresh debate across the UK. But behind every headline are real people, including adults who have spent decades wondering why everyday life feels so much harder for them than it seems to be for others.

At Roarganise, we believe every person's experience deserves to be heard, understood and taken seriously.

As an autistic-owned UK business creating sensory-friendly planners for neurodivergent people, we understand that navigating life before, during and after a diagnosis can be overwhelming. We also understand how difficult it can be to remember, organise and explain years of experiences when you finally get the opportunity to speak to a healthcare professional.

That's why documenting your experiences can be so valuable.

What does the latest UK ADHD and autism review mean?

The independent review published by the Department of Health and Social Care on 9 October 2026 examines changing diagnosis rates, access to support, assessment quality and the benefits and risks associated with diagnosis.

The government has also pledged to improve access to support without making people wait for a formal diagnosis before receiving help.

You can read the official report here: "Independent review into mental health conditions, ADHD and autism" (https://www.gov.uk/government/publications/independent-review-into-mental-health-conditions-adhd-and-autism-final-report).

It is important to recognise that concerns about over-diagnosis do not mean that everyone seeking an assessment has been incorrectly diagnosed, nor do they mean that people who are waiting for an assessment are exaggerating their difficulties.

The picture is complex. Some people may be misdiagnosed, while others have spent years without their autism or ADHD being recognised. Both under-diagnosis and over-diagnosis are important considerations.

For adults who grew up without appropriate support, particularly those who learned to mask their difficulties, these conversations can feel deeply personal.

What about the adults who were missed in childhood?

Many autistic and ADHD adults grew up in a time when neurodivergence was poorly understood. They may have struggled at school, found friendships confusing, experienced overwhelming sensory environments or spent years feeling different without knowing why.

Some were labelled shy, lazy, difficult, disorganised or overly sensitive.

Others worked incredibly hard to hide their struggles. They copied the behaviour of their peers, rehearsed conversations, forced themselves through uncomfortable situations and tried to meet expectations that felt impossible.

From the outside, they might have appeared to be coping.

Behind closed doors, the reality could have been very different.

For some people, it takes a major life change, parenthood, workplace pressure or burnout before they begin to understand their own neurodivergence. Others reach adulthood after years of wondering why they struggle with tasks that seem straightforward for everyone else.

A late diagnosis can bring relief and understanding, but it can also bring grief for the years spent without answers or appropriate support.

We must not allow conversations about rising diagnosis rates to erase these experiences.

Why documenting your experiences before an assessment matters

When you finally receive an assessment appointment, it can be difficult to explain a lifetime of experiences in a single conversation.

You might remember a sensory difficulty one day, struggle to recall childhood examples the next, or find that your mind goes blank when a professional asks you to describe how autism or ADHD affects your daily life.

For some neurodivergent people, language processing difficulties, anxiety, executive dysfunction or the pressure of appointments can make explaining their needs particularly challenging.

This is where keeping a written record can help.

Rather than relying entirely on your memory on the day, you can gradually collect real-life examples of the difficulties you experience.

Consider documenting:

- Sensory sensitivities, including noise, lighting, textures, smells and busy environments.

- Social communication difficulties, including conversations, eye contact and understanding social expectations.

- Masking behaviours and the exhaustion that can follow.

- Difficulties with planning, organisation, time management and remembering appointments.

- Emotional regulation, overwhelm, shutdowns and burnout.

- Repetitive behaviours, routines, intense interests or a need for predictability.

- Experiences from childhood, school, relationships and employment.

- The impact these difficulties have on everyday life, independence and wellbeing.

For each example, try to record what happened, when it happened, what you experienced and how it affected you.

For example, instead of simply writing "I struggle with noise", you might record that the sound of several people talking at once makes it difficult to process speech, causes physical discomfort and leaves you exhausted afterwards.

Specific examples can help you communicate the impact of your experiences more clearly.

You do not need to prove your worth or build a case for a particular diagnosis. The purpose is to help you describe your experiences as accurately as possible.

How Roarganisers can help you prepare for an ADHD or autism assessment

At Roarganise, we create sensory-friendly, modular physical planners designed with neurodivergent needs in mind.

Our Roarganisers provide a practical place to organise everyday life, record important information and keep useful paperwork together.

They are not diagnostic tools, and they cannot guarantee an assessment outcome. Instead, they can help you organise the information you may want to discuss with your healthcare professional.

1. Keep a record of your daily struggles

Our modular inserts allow you to build a planner around your own needs.

You could use your planner to record recurring difficulties, situations that cause overwhelm, sensory triggers and the impact of executive dysfunction on your daily routine.

Having these notes in one place can make it easier to identify patterns over time, rather than trying to remember everything during an appointment.

2. Organise medical appointments and paperwork

Preparing for an assessment may involve GP appointments, referral letters, questionnaires and other supporting documents.

Roarganisers include practical storage features, with pockets for keeping letters and paperwork together. You can use your planner to record appointment dates, questions you want to ask and any follow-up actions.

Having important information organised can help reduce the stress of searching through loose papers when you need them.

3. Make planning more manageable

Executive dysfunction can make even simple administrative tasks feel difficult.

Remembering to complete a questionnaire, contact your GP, gather school reports or follow up on a referral can become overwhelming when everything is scattered across different places.

A physical planner gives you a dedicated place to capture tasks and break them into manageable steps.

You can use your weekly and daily planning pages to keep track of what needs doing without having to hold everything in your head.

4. Create a planner that works for your brain

Every neurodivergent person is different. A planning system that works for one person may be completely unsuitable for another.

That's why Roarganisers are modular. You can choose the inserts that are useful to you, remove the ones you do not need and adapt your setup as your circumstances change.

Our minimalist black-and-white layouts are designed to keep pages clear and functional, while our 170gsm FSC-certified paper provides a substantial writing surface.

Whether you need help managing appointments, organising paperwork or capturing thoughts before you forget them, you can create a system that suits your own needs.

5. Record your experiences without relying on memory alone

Perhaps one of the most useful things you can do before an assessment is to write things down when they happen.

You might notice that you struggle to switch between tasks, become overwhelmed in supermarkets, find telephone conversations difficult or need significant recovery time after socialising.

Instead of hoping you remember these experiences months later, you can make a brief note in your planner.

Over time, these notes may help you prepare a clearer summary of your experiences to share with your assessor.

What information should you take to an autism or ADHD assessment?

The NHS explains that an adult autism assessment may involve questions about your early life, behaviour, relationships and experiences at home, work or college. Professionals may also consider information from people who know you and relevant reports or documents.

You can read more about the process in the "NHS guide to autism assessments" (https://www.nhs.uk/conditions/autism/assessments/).

Depending on your circumstances and the type of assessment, useful information to organise may include:

- A timeline of your experiences from childhood to adulthood.

- Examples of difficulties you experience in different environments.

- Details of sensory sensitivities and masking.

- School reports or information from someone who knew you as a child, where available.

- Relevant medical history and previous assessments.

- Examples of how your difficulties affect daily functioning.

- Questions you want to ask the assessment team.

You do not need to have every document available. Many people do not have access to childhood records, and that should not stop them from seeking advice about an assessment.

Your assessor will determine what information is relevant and what further evidence may be needed.

Designed by an autistic business owner, for real everyday challenges

Roarganise was created from an understanding that traditional planning systems do not work for everyone.

For some neurodivergent people, digital reminders are not enough. For others, complicated layouts, excessive visual clutter or rigid planning systems create additional barriers.

A physical planner can provide a tangible place to capture thoughts, organise responsibilities and keep important information accessible.

Our Roarganisers are designed to be adaptable, practical and sensory-conscious, helping you build a system around your life rather than forcing yourself to fit someone else's idea of organisation.

We know that living with undiagnosed or unsupported neurodivergence can involve years of trying to understand yourself. We also know that preparing for appointments can feel like another task on an already overwhelming list.

Our aim is to make that part of everyday life a little more manageable.

Your experiences matter, whether you have a diagnosis or not

The current debate around ADHD and autism diagnosis is an opportunity to have a more balanced conversation about assessment quality, waiting times, early support and the people who have been overlooked.

It should also remind us that behind every referral is a person trying to understand their experiences and access the right support.

You do not need to have a formal diagnosis to begin recording your difficulties, organising your paperwork or asking for help.

If you are considering an ADHD or autism assessment, start by documenting what you experience in everyday life. Be honest about both the things you find difficult and the things you manage well. Record patterns over time and bring relevant information to your healthcare professional.

A planner cannot tell you whether you are autistic or have ADHD. But it can give you a practical place to organise your thoughts, experiences and questions so that you feel better prepared to explain them.

At Roarganise, we believe neurodivergent people deserve to be listened to, supported and given tools that work with their needs.

Because understanding yourself should not depend on how well you can remember everything in one appointment.

Explore Roarganisers

Discover sensory-friendly, modular planners and inserts designed to support organisation, everyday life and the unique needs of neurodivergent people.

Visit Roarganise.com to find a Roarganiser and build a planning system that works for you.

Roarganise. Designed by an autistic business owner, for neurodivergent life.

Roarganisers are organisational tools, not diagnostic or medical products. They do not replace professional assessment or advice.