In my experience, waiting lists for a diagnosis of autism and/or ADHD are averaging around 12 to 18 months. This is a significant length of time in any child’s life. Yet, too often access to special needs support in schools, within the exam system and other services is dependent on this hard-to-obtain diagnosis. This reliance on diagnoses is both inequitable and potentially harmful to children.
A key issue is that we are, in reality, developing a two-tier system where many parents are seeking private diagnoses for their children as they are not prepared to wait for the NHS or other public services.
This means that children whose parents are willing to do this (and who can afford it) are receiving support while those whose parents who lack the financial and/or emotional resources are not – a system of haves and have-nots.
I have seen this inequality and the desperation to get their child’s needs met lead parents into substantial debt, often taking out loans from family or commercial lenders and scrimping on essentials like heating.
Further, there are issues of children getting inappropriate, inaccurate or even unhelpful diagnoses. First, if parents are prepared to pay enough, they can usually find someone who will provide a diagnosis. While the vast majority of professionals are reputable, professional and experts in their field, there are a minority who will diagnose a child on limited evidence from the parent alone, without the involvement of schools or other services, on occasions with no more than a cursory assessment, online or offline.
Such diagnoses are often generic, providing a report that describes a child with autism, ADHD, or dyslexia, for example, but not one that is personalised to the individual child or helps to identify or support their particular needs.
These diagnoses add an element of unreliability in the “diagnosis market”, giving schools and local authorities reason to distrust and not respond to all diagnoses that are not made by the overwhelmed public services. This further complicates the diagnosis journey for many children, even once they have received their diagnosis.
There is a particular issue with diagnoses for dyslexia and other specific learning difficulties as many local authorities do not have anyone who is able to diagnose them but are not always willing to accept diagnoses when they are made by other professionals.
There is a clear answer to this issue: well-funded public diagnostic services that are able to respond quickly to concerns raised by parents and schools using a multi-agency approach to gather and analyse the information about the child. Sadly, we are a long way from this.
Further, a diagnosis alone does not provide the answer to a child’s needs. A diagnosis or label help us understand a difficulty, but it will not reduce or cure it. It will not necessarily mean that a child can access SEND support, exam access arrangements, or an Education, Health and Care Plan (EHCP) without other supporting information.
In reality, a diagnosis changes little. Knowing a child has a speech difficulty and struggles to articulate particular sounds makes no difference to their speech or ability to make themselves understood.
What makes a difference is the response to their needs and the support they receive. Indeed, the search for and emphasis on a diagnosis can obscure the child’s needs and inhibit our ability to meet them – as I have written about before in Headteacher Update.
A needs-led approach
SEN support must extend beyond diagnoses and labels. We need to take a needs-led approach to SEND in schools. We need to focus on children’s needs and respond to those rather than wait for or only respond to a diagnosis.
There are many children who do and should receive SEND support in schools who do not have or need a diagnosis. Some children who have diagnoses of different kinds are not on the SEND register because their needs can and should be met through quality first teaching.
We cannot ignore children’s needs because they do not have a diagnosis, nor should we provide children with additional support they don’t need just because they do have one. Yet this is a pressure faced by many SENCOs as parents search for additional support for their children in a system that is difficult to understand, even by those working within it.
There are additional issues related to schools’ responses to behaviour incidents. We must avoid penalising children for behaviours that are part of a special need – medical or educational.
For example, many with ADHD, by the nature of their condition, are going to fidget and fiddle more than their peers. They should not be penalised for this. Yet this can be difficult for schools when trying to balance inclusion and disciplinary agendas, particularly when dealing with incidents of aggression or racism, for example.
Even within so-called zero-tolerance settings, there must be a balance between the enforcement of whole-school behaviour expectations and some leniency allowable to those with special needs.
However, too often decision-makers and senior leaders fall back on a child’s diagnosis and use this rather than consideration of the child’s needs to inform their disciplinary response.
This means the child with a diagnosis is supported, while a child without, even though they have identical needs, feels the full punitive force of the behaviour policy.
How do we know what support a child needs?
A diagnostic label does not tell us how to support the child in school, nor should it. The diagnosis can act as a signpost, but it does not provide the details of the support and adjustments the child needs to learn, progress, and be happy in school.
Further, in some circumstances, a diagnostic label can become a barrier to providing the appropriate support for a child. It can be restrictive, leading to assumptions about the child’s needs. For example, a child has a diagnosis of autism, so their needs are identified based on a misconception that all children with a label of autism share the same difficulties.
But these diagnoses are on a continuum. The stereotypes and assumptions about a need tend to focus on the extremes, such as the anti-social geniuses and “Rain Man” style savants. Most people come somewhere in-between but understanding and acknowledgement of this can be lost in the focus on the diagnostic label, stereotypes and pre-conceptions about what “someone with autism looks like”.
The diagnosis implies that the child displays evidence of the triad of impairments associated with autism, but the balance and impact of these will vary from individual to individual and our response needs to match their individual strengths and difficulties, rather than be a generic response to the label.
Confusingly, while many children with the same diagnosis present with different needs in the classroom, children with different diagnoses may present with similar needs. Difficulties with focus, sensory overload, word-finding, and low self-esteem can be characteristic for those with autism, ADHD and dyslexia or a combination of these difficulties. The demand for a diagnosis is intensified as many teachers feel they are, or are perceived by parents as, lacking the expertise needed to support children.
Both groups can feel that once a child is given a diagnosis, they should be able to do something that will suddenly make the learning easier. There remains for many parents and some professionals a belief or hope that from a diagnosis will grow the cure; that if the child has a diagnosis, somehow this will solve and/or excuse any difficulties. For some, it may even excuse inaction as they feel “there is nothing that can be done”.
Seeing past the label
These risks involving diagnostic labels are clear to many SENCOs. But faced with pressure from senior leaders, other staff, and parents, too often we allow the label to overwhelm our professional understanding and knowledge of the individual. This means that support is directed to meet the descriptor of the difficulty rather than the individual’s needs.
Children are not robots to be fitted into neat diagnostic boxes. They demonstrate a range of signs, symptoms and indicators which may reflect different educational needs or diagnoses, but also will be influenced by their personality, experiences, and environment as well as their age, stage, and gender.
These will also change as the child develops and the educational demands placed on them vary. The support a child needs in primary school will be different to the support they need in secondary. Schools need to be able to respond imaginatively to the child’s needs and provide support focused on meeting those needs.
In my view, there are three reasons for a school to support seeking a diagnosis for a child:
- To access funding.
- To give us direction in understanding and helping a child and their needs – because this is not known, despite our efforts.
- To support a child’s self-esteem by providing an explanation of their difficulties which they themselves can understand (or to support the parents to understand that there are issues with their child beyond their parenting).
Yet too often a diagnosis becomes a label, causing us to lose sight of the child and leading to assumptions about them and their needs.
Final thoughts
I am not against diagnoses of SEN and have myself benefitted from a diagnosis of dyslexia. When I was a child, it enabled my parents, teachers and me to understand that there was a reason for my significant difficulties and that it was not just that I was lazy and/or stupid. But that alone was not enough to make the difference to my educational future. It required a focused response that considered my particular needs, many of which do not match the standardised descriptors of dyslexia.
SENCOs need the confidence and support from other school leaders to move beyond the label and see the whole child. This can be difficult when facing demands from anxious parents and over-stretched teachers.
We need approaches that emphasise children’s strengths while working to diminish their barriers to learning. Too often an over-emphasis on labels inhibits this, obscuring the child’s needs from view and preventing them and their teachers from gaining the right support.
- Sara Alston is an experienced SENCO and safeguarding lead who also works as a SEND, inclusion and safeguarding consultant and trainer. Visit www.seainclusion.co.uk. Find her previous articles and podcast appearances for Headteacher Update via www.headteacher-update.com/authors/sara-alston/