The Hidden Cost of Waiting for Autism and ADHD Assessments

Last week, I was reading the Children's Commissioner's report on waiting times for children with suspected neurodevelopmental conditions, and one sentence has stayed with me ever since. Dame Rachel de Souza wrote that, "In failing to provide timely support, we are not only wasting public money – we are robbing children of their childhood and their potential." It is one of those statements that is difficult to move past because, the more I reflected on it, the more I realised it says something much bigger than simply acknowledging that waiting lists have become too long.

It also made me realise why this is a blog I have wanted to write for some time. Increasingly, the conversations I have with parents, teachers and other professionals seem to arrive at exactly the same place. We might begin by discussing behaviour, emotional regulation, school attendance or the strategies that could support a particular child, but before long the conversation shifts to waiting. Waiting for an assessment. Waiting for support. Waiting for somebody to finally recognise what families have often known for months, and sometimes years. After hearing the same frustrations expressed in so many different ways, I found myself wondering whether we have become so focused on the waiting list itself that we have overlooked what waiting is actually doing to children and the people around them.

We often think about waiting times as though they are primarily an NHS problem. The conversation understandably centres on workforce shortages, increasing referral numbers, funding pressures and service capacity, all of which are important. However, the more I thought about the Children's Commissioner's report, the more I questioned whether we are looking at this issue through too narrow a lens. Waiting for an assessment is not simply a delay between referral and diagnosis. For many children, it becomes part of their childhood. It becomes the backdrop against which they start school, navigate friendships, experience success and failure, encounter increasing academic demands and begin forming beliefs about themselves. By the time an assessment eventually takes place, life has not been on hold. It has continued moving forward every single day.

I think that changes the conversation entirely. Childhood does not pause while services catch up. Children continue growing, learning, adapting and making sense of the world regardless of where they happen to sit on a waiting list. Every interaction with parents, teachers, peers and professionals contributes to how they understand themselves and how they believe other people see them. The assessment may be delayed, but the experiences shaping that child's development are not. Perhaps that is why long waiting times matter so much. They are not simply postponing access to a diagnosis; they are influencing the experiences that shape childhood itself.

Waiting Is More Than Time

The scale of the current situation is well documented. Across England, well over two hundred thousand people are currently waiting for an autism assessment, with most already waiting far longer than the thirteen-week timeframe recommended by NICE clinical guidance. ADHD services are facing similar pressures. Although there is no single national dataset that consistently captures waiting times across England, reports from NHS Trusts, Freedom of Information requests and the experiences shared by clinicians across the country all point towards the same conclusion. Demand has increased dramatically over recent years, while the systems designed to respond have struggled to keep pace.

Whenever I read statistics like these, I find myself thinking less about the numbers themselves and more about the people behind them. It is easy for figures to become abstract when we see them often enough, yet every number represents a family trying to understand experiences that can feel confusing, exhausting and, at times, deeply isolating.

Behind every referral is a child continuing to attend school each day, trying to manage sensory environments, navigate friendships, cope with changing routines or meet expectations that may not align with how they experience the world. Those experiences continue regardless of whether an assessment has taken place, which is why I think reducing waiting times to a discussion about appointments unintentionally misses the bigger picture.

Perhaps what concerns me most is the way we talk about waiting itself. The language we use often makes it sound as though families are simply holding their place in a queue until somebody is finally able to see them. Yet anyone who has supported a child through this process knows that nothing about waiting feels passive. Parents continue searching for answers, teachers continue making decisions about support, children continue responding to environments that may or may not meet their needs and everyday life carries on regardless of where a referral sits within the system. The waiting list may belong to the NHS, but the experience of waiting belongs to families.

When Understanding Depends on Diagnosis

One of the things I have found myself reflecting on more and more is the relationship between diagnosis and understanding. On the surface, it seems entirely reasonable that support follows diagnosis. Diagnoses provide clarity, help professionals communicate using a shared framework and ensure that specialist resources are directed towards those who need them most. Yet the more I have thought about it, the more I wonder whether we have unintentionally allowed diagnosis to become the point at which understanding begins, rather than one of the ways we deepen an understanding that has often been developing for years.

Parents rarely wake up one morning and suddenly decide to seek an assessment. More often than not, referrals are the culmination of months or years of observation. Families notice that certain environments consistently lead to overwhelm, that transitions are particularly difficult, that sensory experiences provoke distress or that everyday demands seem to require considerably more effort than they do for other children. Teachers frequently notice similar patterns in school. None of these observations become meaningful only once an assessment report has been written. The assessment may provide clarity and validation, but it rarely introduces families to experiences they have not already been living with.

Increasingly, I find myself wondering whether we sometimes place too much emphasis on certainty before allowing ourselves to respond. If a child is clearly struggling with noisy environments, requires additional processing time or finds changes to routine particularly challenging, does it really make sense to wait years before making relatively simple adjustments that could make everyday life more manageable? Some aspects of support quite rightly depend upon specialist assessment, particularly where finite resources must be allocated fairly. However, there is an important difference between waiting for specialist provision and waiting to show understanding. Those two things are not the same.

Childhood Continues Regardless

The developmental implications of prolonged waiting are difficult to ignore because childhood is characterised by extraordinary change. Two years may feel frustrating at any stage of life, but during childhood they represent a significant proportion of a young person's developmental journey. Those are years spent building friendships, developing confidence, learning how to regulate emotions, discovering strengths, encountering setbacks and gradually forming an understanding of who they are. Those experiences do not become any less significant simply because a child is waiting for an assessment.

As someone who works closely with families, I have lost count of the number of conversations in which parents have said something remarkably similar: "I know my child is struggling, but I feel as though nobody really believes me yet." Those conversations have stayed with me because they highlight a tension that seems to sit at the heart of the current system. Many parents become incredibly knowledgeable about their child's individual profile long before an assessment takes place. Their understanding is built upon years of lived experience rather than a single appointment. Yet until formal confirmation arrives, that knowledge can sometimes feel as though it carries less weight than paperwork that has not yet been written.

I do not believe this reflects a lack of care from professionals. Most of the teachers, clinicians and practitioners I meet are doing their very best within systems that are under immense pressure. However, I do think it reflects something about the way our systems currently operate. Formal diagnosis has, perhaps unintentionally, become the point at which observations are validated, even though those observations have often been accurate for years. Perhaps that is one of the greatest challenges created by long waiting times. Families are not simply waiting for answers. They are waiting for the understanding they have already developed to be recognised by the systems designed to support them.

When Schools Become Part of the Waiting List

Although assessment pathways sit within healthcare, much of the impact of waiting is experienced elsewhere. In reality, children spend far more of their lives in classrooms than they do in clinics, which means schools often become the places where the consequences of delayed assessment are most visible. Teachers are the adults who witness increasing anxiety, emotional dysregulation, sensory overwhelm, social challenges and executive functioning difficulties on a daily basis, often long before an assessment has taken place. At the same time, they are expected to make decisions about support without always having the certainty or specialist guidance that a completed assessment can provide.

It is important to acknowledge that this places schools in an incredibly difficult position. In my experience, the vast majority of teachers genuinely want to do the very best for the children they support. They care deeply about their pupils and work tirelessly to create classrooms where everyone has the opportunity to succeed. However, they are also working within systems shaped by finite resources, competing priorities and increasing accountability. Funding, specialist provision and access to additional support are often closely linked to formal processes, so it is perhaps understandable that some schools feel more confident making significant adjustments once a diagnosis has been confirmed.

Others adopt a more needs-led approach, recognising that if a child is clearly struggling, there is little value in waiting for paperwork before making reasonable changes. Neither approach reflects a lack of care, but the differences between them can have a profound impact on children's day-to-day experiences.

Increasingly, I find myself wondering whether this inevitably creates inconsistency in children's educational journeys. Two pupils with remarkably similar needs may have entirely different experiences, not because their presentations differ, but because the schools around them interpret and respond to those needs differently. One child may benefit from predictable routines, sensory adaptations, flexible teaching approaches and adults who instinctively ask, "What might this child need right now?" Another may spend months or even years trying to meet expectations that were never designed with their way of experiencing the world in mind. When that happens, it becomes difficult to argue that the assessment waiting list exists only within healthcare. In many ways, it extends into classrooms too.

Behaviour Without Context

Perhaps this is where my own background in behaviour analysis has shaped the way I think about waiting. One of the principles that has consistently influenced my practice is that behaviour can only really be understood when we consider the context in which it occurs. Behaviour does not happen in isolation, nor does it exist independently of the environment. Every behaviour serves a purpose, whether that is communicating distress, seeking predictability, avoiding overwhelm, accessing something meaningful or regulating an internal experience that other people cannot immediately see. Without understanding that context, it becomes remarkably easy to misunderstand what a child is trying to communicate.

I have often found that when adults pause and become genuinely curious about behaviour, rather than immediately trying to change it, the conversation shifts in a meaningful way. Instead of asking, "How do we stop this behaviour?" we begin asking, "What is this child experiencing that makes this behaviour the most effective response available to them?" That change in perspective may seem subtle, but it often transforms the support we provide because it encourages us to understand the child before attempting to change the behaviour.

This is not because professionals lack knowledge or compassion. Rather, it reflects something that all human beings do. We naturally make sense of behaviour using the information available to us, and when that information is incomplete, we fill in the gaps with explanations that appear most plausible. A child who repeatedly leaves the classroom may therefore be viewed as avoiding work rather than escaping an environment that feels overwhelming. Another who struggles to begin independent tasks may be perceived as unmotivated when the real difficulty lies in planning, organising and initiating the task itself. A pupil who constantly fidgets may appear inattentive when movement is actually helping them regulate their nervous system. None of these interpretations arise from poor intentions, but they can lead adults towards very different responses.

That distinction matters because the way we understand behaviour inevitably shapes the way we respond to it. If we believe a child is choosing not to engage, our interventions are likely to focus on increasing compliance or motivation. If we understand that the same behaviour reflects anxiety, sensory overwhelm or executive functioning differences, we are far more likely to consider how the environment can be adapted to reduce those barriers. The behaviour itself may look exactly the same, but our interpretation fundamentally changes the support we provide. This is one of the reasons why prolonged waiting matters so much. It is not simply delaying diagnostic clarity; it increases the likelihood that children spend some of their most formative years being understood through explanations that may only tell part of the story.

Have Diagnoses Become Passports to Compassion?

The more I have reflected on assessment waiting times, the more I have found myself returning to a question that feels both uncomfortable and important. Have diagnoses, perhaps unintentionally, become passports to compassion? I certainly do not mean that diagnosis is unimportant. For many families, receiving a diagnosis is an incredibly validating experience. It provides language, understanding and, in many cases, access to support that should never have required years of persistence to obtain. However, I do sometimes wonder whether our systems become noticeably more understanding once a diagnosis has been confirmed, even though the child themselves has not changed at all.

A child does not suddenly become more sensitive to noise because an assessment has been completed. They do not suddenly develop executive functioning differences, find social situations more challenging or experience greater emotional overwhelm. Those experiences existed beforehand. What changes is the way adults interpret them. Behaviours that may previously have been described as disruptive, avoidant or inattentive are often reinterpreted through a neurodevelopmental lens. Expectations become more flexible, adjustments become easier to justify and conversations begin to centre on understanding rather than correcting. In many ways, the diagnosis changes adults far more than it changes the child.

Perhaps that raises a question for all of us, regardless of the role we play. If we are willing to respond with greater curiosity and compassion after diagnosis, why should those qualities be reserved until clinical certainty has been reached? Surely uncertainty should encourage us to ask more questions rather than fewer. It should invite us to become more curious about a child's experiences, not less. Many of the adjustments associated with neurodiversity-affirming practice are not interventions that carry significant risk.

Predictable routines, sensory awareness, visual supports, flexible communication, additional processing time and emotionally safe relationships benefit many children, regardless of whether they eventually receive a diagnosis. If those approaches represent good practice after assessment, it seems difficult to argue that they somehow become inappropriate beforehand.

The Hidden Cost of Being Misunderstood

Perhaps one of the consequences of prolonged waiting that troubles me most is the effect it can have on how children begin to see themselves. Childhood is not only a time when young people are learning about the world around them; it is also when they are gradually constructing their own identity. They are constantly making sense of the feedback they receive from adults and peers, developing beliefs about what they are good at, where they fit in and whether they feel accepted by the people around them.

When a child's behaviour is repeatedly misunderstood, those misunderstandings can gradually become part of the story they tell themselves. A child who is regularly described as lazy may begin to believe they simply do not try hard enough, when the real challenge lies in executive functioning. Another who is frequently told they are overreacting may start to question their own sensory experiences because nobody else seems to understand why certain situations feel so overwhelming. Others become known as the disruptive child, the anxious child or the difficult child, labels that can quietly shape identity long before anyone has taken the time to understand what sits beneath the behaviour.

Many children respond by masking those differences in an effort to fit in. Although awareness of masking has grown considerably in recent years, I still think it is often misunderstood. From the outside, masking can look remarkably like coping. A child appears calm, compliant and successful, so it is easy to assume they are managing well. Yet beneath that outward appearance may be an extraordinary amount of effort spent suppressing natural responses, rehearsing conversations, monitoring social interactions, tolerating overwhelming environments and trying desperately not to stand out. By the time many children finally reach assessment, they have not simply been waiting for answers.

They have spent years adapting themselves to environments that did not always understand them, and that can leave a lasting impact long after the assessment itself has taken place.

Looking Beyond the Diagnosis

One consequence of prolonged waiting that is sometimes overlooked is the way support can become fragmented. Children rarely present with one isolated difficulty. Instead, families and professionals may notice anxiety, emotional dysregulation, sensory sensitivities, sleep difficulties, communication differences or increasing school avoidance.

Understandably, each of these challenges is often addressed individually because each requires attention in its own right. However, when we focus on individual difficulties without recognising the possibility that they may be connected, there is a risk that we lose sight of the bigger picture.

This is one of the reasons timely assessment is so valuable. A diagnosis should never define a child, but it can provide a framework that helps adults understand how experiences that once appeared unrelated are often closely connected. At the same time, I do not believe we should wait for that framework before responding with empathy, curiosity and practical support. Good assessment deepens understanding, but thoughtful practice begins long before a report is written.

Towards a Needs-Led Approach

Reducing waiting times is undoubtedly important, but I do not think it is the only conversation we need to have. Even if assessment pathways became significantly shorter, children would still benefit from systems that respond to observable need rather than waiting for formal confirmation before making reasonable adjustments. In many ways, this is less about changing everything we do and more about changing the questions we ask. Instead of beginning with, "Has this child received a diagnosis?" perhaps we should begin with, "What might this child need in order to feel safe, understood and able to learn?"

Many of the approaches that support autistic children and those with ADHD are simply examples of good, inclusive practice. Predictable routines, sensory awareness, flexible communication, additional processing time and emotionally safe relationships do not disadvantage other pupils. If anything, they often create learning environments that benefit everyone. Likewise, recognising parents as genuine partners rather than simply sources of information allows us to build upon the expertise they have developed through years of knowing their own child.

A Final Reflection

When I think back to the Children's Commissioner's report, I keep returning to the idea that delayed support does more than postpone assessment. It shapes experiences during some of the most important years of a child's life. Waiting is not simply measured in months or years; it is measured in missed opportunities to understand, to adapt and to respond differently.

There is no doubt that assessment services need greater investment and increased capacity. Families should not have to wait years for clarity, and professionals should not have to work within systems that make timely support so difficult to achieve. However, I also hope this conversation encourages us to reflect on something more fundamental. If we genuinely believe that every child deserves to be understood, then our willingness to listen, adapt and respond should not begin only once a diagnosis has been confirmed. It should begin the moment a child shows us, in whatever way they can, that they are experiencing the world differently.

Assessment undoubtedly brings clarity, validation and access to important support, but our willingness to understand children should never be conditional upon paperwork. Children may have to wait for a diagnosis because of the realities of the current system, but they should never have to wait to experience curiosity, compassion and environments that recognise and respond to their needs. If there is one message I hope readers take away from this discussion, it is that while we continue striving for shorter waiting times, we must also ensure that no child spends those years waiting to be understood.