Moving beyond the label: Needs not diagnosis...

Written by: Sara Alston | Published:
Image: Adobe Stock
Brilliant article and the one I was always meaning to get round to writing. I will be using this as ...

Posted by: ,

For many parents and too many professionals, the diagnosis is seen as a magic answer and the solution to a child’s difficulties – but it is not. Sara Alston discusses the risks involving diagnostic labels and looks at how we must provide SEN support based on need


As a SENCO, I am constantly asked “What is wrong with them?” or “Why can’t they do this or that?”

Both staff and parents often want a label to explain a child’s difficulties. They believe that if we can find a diagnosis or label to explain the difficulty, it will reduce or may be even cure it.

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 may make a difference is the response to their needs and the support they receive.

In our book, The Inclusive Classroom (2021), Daniel Sobel and I discuss our concerns that the search for and emphasis on a label often obscure the child’s needs and inhibit our ability to meet them – children’s SEN extend beyond diagnosis and labels.

Within this there is a constant pressure on SENCOs and other school leaders to provide the appropriate support for every child in their care, ideally quickly, effectively and cheaply.

In my area, the waiting time for a CAMHS appointment for a diagnosis of autism spectrum disorder (ASD) or ADHD is 12 to 18 months. At the same time, there are cases of parents paying for almost instant diagnosis often without notifying or involving the school.

Whatever the diagnostic path, we need to work to support children and hope our work is able to feed into the diagnostic and support processes.

Nevertheless, there is still this belief among parents, and some professionals, that a diagnosis is an answer to a child’s difficulties and will entitle them to extra support or even an Education, Health and Care Plan (EHCP).

Unfortunately, neither is true. There are many children on my SEND register who do not have or need a diagnosis, and there are children throughout the school who have diagnoses of different kinds but 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 that they don’t need just because they do have one. Yet this is a pressure faced by many SENCOs as parents search for support for their children in a system that is not easy to understand, even by those working within it.

There is an additional issue related to schools’ response 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 and should not be penalised for this.

Yet there are difficulties for schools, particularly when dealing with incidents of aggression or racism. Even within so-called zero tolerance settings, there is a balance between the enforcement of whole school behaviour expectations and some leniency allowable to those with SEN.

Given the difficulties of these issues, too often decision-makers fall back on a child’s diagnosis and use this rather than consideration of the child’s needs to moderate 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 school’s behaviour policy.

Still worse there are occasions when we are forced to implement a punitive response to a child, for example a fixed term exclusion, even when it is inappropriate, in order to demonstrate the level of their needs and so access support for them.

The diagnostic label does not tell us how to support the child in school, nor in the case of a medical diagnosis 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 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 ASD, so their needs are identified based on a misconception that all children with a label of ASD share the same difficulties. But these diagnoses are on a continuum.

The stereotypes and assumptions about need tend to focus on the extremes – the anti-social geniuses and “Rain Man” type savants, or locked-in non-verbal “head-bangers”. Most people come somewhere in between but this is too often lost in the focus on the diagnostic label.

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 those strengths and difficulties, rather than be a generic response to the label.

Confusingly, while many children given 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 ASD, ADHD and dyslexia or a combination of these difficulties.

The demand for a diagnosis is intensified as many teachers feel that they lack expertise. They feel that once a child is given a diagnosis, they should be able to do something that will suddenly make the learning easier for the child.

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”, so there is no need to try to improve conditions for the child or promote their learning.

This is exacerbated by both the number of celebrities with different diagnoses and the ease of “diagnosis” by internet search, which means that for some a diagnostic label has almost become a status symbol. The diagnosis is seen as a magic answer and solution to a child’s difficulties, but it is not. It is simply a step in the right direction.

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 knowledge of the individual and so 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 produce 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 to meet them.

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.
  • (And most importantly), 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.

I am not against diagnoses of SEN and benefited from a diagnosis of dyslexia myself. When I was a child, it enabled my parents, teachers and me to understand that there was a reason for my significant difficulties with reading and writing 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, not all of which fit 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-stressed teachers. We need whole school approaches that emphasise both children’s strengths, as well as working to diminish their barriers to learning.

Too often an over-emphasis on labels can inhibit this, obscure the child’s needs from view and prevent 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. Read her previous articles for Headteacher Update via https://bit.ly/2EY0wNj


Further information & resources

Alston & Sobel: The Inclusive Classroom: A new approach to differentiation, Bloomsbury, January 2021:
https://bit.ly/3kBduiQ


This material is protected by MA Education Limited copyright.
See Terms and Conditions.

Comments
Brilliant article and the one I was always meaning to get round to writing. I will be using this as a staff ' let's discuss' conversation starter at a staff meeting. Thank you.
Posted By: ,
Name
 
Email
 
Comments
 

Please view our Terms and Conditions before leaving a comment.

Change the CAPTCHA codeSpeak the CAPTCHA code
 
Sign up Headteacher update Bulletin
About Us

Headteacher Update is the only magazine delivered directly to every primary school headteacher in the UK. It is published six times a year, at the beginning of each term and half-term, to keep headteachers up-to-date with everything going on in primary education.

Learn more about Headteacher update

Newsletter

Register to receive regular updates on primary education news delivered free to your inbox.