Does My Child Need A Label?
As someone who spends every day working with neurodivergent people, describing a person as autistic or as having ADHD is entirely natural to me. But I’m conscious that this isn’t the case for everyone. For parents who are just entering the world of special educational needs for the first time, the idea of using this language to describe their child can be very daunting. When you’re part of the neurodivergent community, it’s easy to forget that the world outside still holds on to so many preconceived ideas about what it means to be autistic and how a child with a certain label might behave.
From my experience, one of the most difficult decisions parents talk about is whether to take their child for an assessment. The idea of labelling their child, and the stigma that may be associated with this label, causes a lot of worry. Won’t they get bullied at school? What will the rest of the family think? What will happen when they go to secondary school? Won’t universities reject them if they know they have this condition? Will it stop them from getting a job? The same questions arise time and time again.
I’m a firm believer that knowledge is power. If you know what you’re dealing with, it’s much easier to find a positive way forward. Having said that, knowledge and understanding of a child doesn’t necessarily mean they need a label. As I say to my clients, going ahead with an assessment is a decision no one else can make for you but, if you’re struggling with it, there are some key questions you can ask yourself that might help you decide what to do.
Who is the diagnosis for?
Whoever you’re talking to, whether it’s a colleague, friend or your child themselves, understanding and being able to articulate why you are taking them to see a doctor is really important. If you can explain that you or their teachers are worried that they’re finding things difficult and everyone is looking for ways to help them, then you’re on the right track going to an appointment. If your primary motivation is to be able to challenge anyone who criticises your parenting, it might be worth thinking it through a bit more. That doesn’t mean don’t go ahead with the assessment, it just means take a step back and reflect on why you’re doing it first.
Regardless of the outcome of an assessment, the consequences for your child and their relationship with you can depend just as much on everyone’s attitude going into the assessment as it can on anything else. If your child perceives it as a criticism or has a sense that people don’t love them for who they are, the long-term impact on their emotional wellbeing can be severe. However, if your child recognises that it’s for them and they engage with the process positively, having a diagnosis can be very beneficial. It can be a relief for everyone to have some answers. For a child, knowing that there’s an explanation for why they are finding things so hard can take away the loneliness and make facing their difficulties much easier. Making sure your child feels secure in the knowledge that pursuing a diagnosis is entirely because it’s in their best interests is really important for moving forwards positively.
What help can my child access with and without the diagnosis?
There are times when having a diagnosis will help open doors to additional support and there are times when it won’t. The statutory guidance for schools (written in the SEND Code of Practice) is to follow a needs-based approach to meeting the needs of pupils with special educational needs and disabilities. This means that it’s the responsibility of the teachers and the SENCO to assess what support a child needs if they’re struggling at school and to implement appropriate support for them. It doesn’t matter whether the child has seen a doctor, psychologist or specialist dyslexia tutor, the same rule applies: every child is entitled to have reasonable adjustments and additional provision in place if they need it.
This might sound ideal but it doesn’t always work brilliantly in practice. It can really depend on the individual teacher and how experienced they are at identifying additional needs while teaching 30 other pupils at the same time. Also, when it comes to other services, the rules aren’t quite as simple.
Each local authority SEN department has a team of specialist advisers. For example, there are autism advisory teachers who go into different schools to offer specialist guidance on how to support a child who is autistic, but this service is only available to those with an autism diagnosis. In many cases, even being on the waiting list for assessment isn’t enough, they need to see the diagnosis written on a piece of paper before they can offer any support. This rule applies to other branches of the local authority team too.
In addition to education services, there are numerous charities and other organisations that offer support to children and young people with certain conditions. You may also be eligible to apply for Disability Living Allowance (DLA) and other funds that exist if the support your child needs comes with additional costs. While not all services will expect you to provide a diagnosis, they will most likely all want to see written evidence of your child’s needs, which is much easier to demonstrate when they have a diagnosis.
With this in mind, it’s worth exploring what support services are available in your area. For education services, google your borough’s local offer which will give details of all the SEN support that’s managed by your local authority. If you know that the support your child needs is only going to be possible with a diagnosis, it goes a long way to helping you make the decision.
What happens when they’re older?
If your child is younger and you’re concerned about what happens when they get to secondary school, it might be useful to note that most schools (in the UK at least) are non-selective. This means that they can’t choose which students to admit based on academic levels or the absence of additional needs. A school cannot discriminate against a child for having a diagnosis of any special educational need. It’s worthwhile noting at this point that the admissions process is not the same if a child has an EHCP and, if this applies to you, I’d recommend speaking to your local authority SEN caseworker or SENDIASS officer for more advice.
Another key issue that tends to arise at secondary school is access arrangements for exams. You might feel that your child needs extra time in their GCSEs but are still weighing up the pros and cons of any assessment that could make this possible. The procedure for securing access arrangements can be quite complicated but, in short, you don’t need a diagnosis or specialist report for a school to put arrangements in place. Most schools have an internal assessment process and should discuss with you what arrangements can be put in place for your child, regardless of a diagnosis, if they feel these arrangements are needed. Having said this, there are times when a diagnosis does help. For example, a medical diagnosis (where the assessment was carried out by a doctor or mental health professional), such as for autism or ADHD, can mean your child automatically qualifies for extra time (or other exam arrangements) without any need for extra testing.
If your child is happy, doing well and accessing the support they need, you may decide that a diagnosis isn’t really necessary at the moment. But what comes next? Well, university systems don’t work in the same way. While there are disability support services, students do need to show evidence of their needs at school. Some universities may accept letters from teachers or from the school SENCO, but others may ask to see a diagnosis. You’ll need to look into the specific requirements at your child’s university of choice and it’s worth considering that this may affect their decision on which universities to apply to.
What happens when they go to work?
In the workplace, employers are required to make reasonable adjustments for employees with disabilities. This includes anything from providing an accessible desk and parking space for someone with mobility needs to providing dictation software for an employee with dyslexia if they need it. Disability is a protected characteristic under the Equality Act 2010 and employers must do what they can to protect disabled employees from discrimination. This should, in theory, prevent your child from ever having difficulties in the workplace when they’re older (although I can’t guarantee they won’t have an unfair boss with prejudiced ideas who doesn’t care for the law). On balance, a diagnosis will most likely give them access to extra support whereas, sadly, a lack of diagnosis won’t prevent illegal discrimination.
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If there’s one message to take away from reading this, I’d say it’s that, in general, diagnosis is always preferable over no diagnosis, but how you manage the journey matters too. Prepare your child in advance and address any concerns they have, educate yourself so you can give them the answers they need to hear, keep the conversations about any potential diagnosis positive so that they can feel positive about it too, and allow them the time and space to process the emotions of whatever comes their way. More than anything, remember that a diagnosis will not define your child. It doesn’t change who they are and should never limit the possibilities of what they can achieve.