Support should not begin and end with a diagnosis

When I think about what good neurodevelopmental services should offer, I come back to a question that matters deeply to me: what happens to people before and after their assessment?

Of course, I want assessments to be thorough and standards to be consistent. Getting that right matters enormously. But I also care about what happens while someone is waiting, how they are supported through the process, and what they are left with once an assessment is complete.

My background in education, particularly my time as a Deputy SENDCo, shapes how I feel about this. When you are trying to help a child manage the school day, or listening to a parent explain what life is like at home, you need something practical to offer them. Families need understanding, guidance and someone willing to listen while they are trying to work out what comes next.

Those conversations have stayed with me. So has the feeling of wanting to help a family who is struggling now, even when answers or specialist appointments may still be some way off.

Support while people are waiting

That belief has followed me into my work in neurodevelopmental services. I feel strongly that support should begin when a need is recognised. People should not have to wait for a diagnosis before their difficulties are taken seriously.

For a family trying to get through each school day, or an adult struggling at work or at home, the questions are often immediate. What could make tomorrow easier? Who can we speak to? How can we help other people understand what is happening?

There may still be uncertainty about the explanation for someone’s difficulties. Even so, listening to their experiences and helping them identify practical next steps can make the waiting period feel less isolating.

I want people to feel that they have been heard, that their concerns matter and that they know where to turn while they wait.

What happens after an assessment?

I care just as deeply about what happens after someone receives their assessment outcome.

A diagnosis can bring clarity, relief and validation, but it can also leave people with questions. What does this mean for me? How do I explain it to my child? What could help at school, at work or at home?

Sometimes those questions only emerge once someone has had time to take everything in. A conversation that felt clear during an appointment may feel different a few days later, when they are trying to explain the outcome to a partner, a teacher or their child.

I want people to feel they have somewhere to take those questions, with practical next steps they understand and can use.

The same consideration matters when an assessment does not result in the diagnosis someone expected. Their difficulties still deserve attention, and they should understand what the outcome means and what further support or exploration may be appropriate.

What wraparound care means to me

For me, wraparound care should be considered from the very first enquiry and carried through the whole assessment process.

It means thinking about the person’s experience at each stage. Do they understand what will happen next? Do they know who to contact? Have they had an opportunity to ask questions? Is the information they receive useful in their everyday life?

It also means recognising that people arrive with different circumstances, expectations and support networks. Some may have spent years trying to understand their experiences. Others may be approaching an assessment with uncertainty or worry. Families may be exhausted by the time they reach a service.

An individual approach begins with making room for those experiences and understanding what matters most to that person.

Space for informed conversations

I feel the same need for an individual approach in discussions about ADHD medication.

I want people to feel able to ask questions and talk openly with their clinician about their options, including potential benefits, side effects and ongoing monitoring. Their circumstances, preferences and wider support needs should be part of that conversation.

People should have the time and information they need to understand the options being discussed, raise concerns and know how to seek advice as things progress.

For me, that reflects the same principle that runs through the whole assessment journey: people need to be involved, listened to and supported in understanding what comes next.

Bringing these values into ASG’s work

As ASG focuses on training and consultancy, these experiences continue to shape what I want our work to contribute.

The professionals we train have opportunities to make a difference through the assessments they undertake, the conversations they have and the guidance they offer. I want our work to encourage thoughtful practice that considers the person’s life beyond the assessment appointment.

My hope for neurodevelopmental services is that improvements lead to changes people can actually feel in their everyday lives: being listened to, knowing who to contact and having support that continues beyond an appointment or a report.

Those are the things that matter to me, and they are the values I want to bring to my work.

Kelly Latimer, Autism Services Group