Graham Chatterley is an assistant head at a school in Warrington for pupils with a range of SEMH needs. He has 4 children, the youngest 2 of which have varying ASD needs. One being very high functioning with some social and understanding difficulties, however managing well in Mainstream Primary. The other having significant ASD, ADHD and Sensory Processing Disorder needs requiring an SLD setting. This has put Graham in an unusual position of experiencing both sides of Special Education Needs which has aided his understandings of both. He has kindly provided this guest post for the Axcis blog.
Is labelling children unavoidable to get them the help they need and deserve?
I was at a conference the other day where the speaker, who was coming from a professional psychologist point of view, was talking about how we shouldn’t label children with additional needs.
In principle I absolutely agree with his theory, a child is an individual who might have additional needs. They are not an ASD child or an ADHD child as I often hear them referred to as. This implies that if they have these needs they are all the same. I don’t want to go into spectrums but attempting to treat them all the same because they share a need is narrow-minded and unfair. Yes, there may be some generic traits and strategies that work for the majority but we should not presume to know them because they have a common difficulty. You wouldn’t step into a room of wheelchair users and expect them to have the same interests, behaviours and personalities, though often this is the case with something like autism.
Awareness of these additional needs is improving – and this is a good thing. Unfortunately, if one is lucky enough to get a diagnosis, it will often come with a label. However should we not give children the diagnosis they need because it might cause people to make assumptions about them? This can, indeed be a dilemma. However not recognising a difficulty is far more damaging in my opinion than any label.
Experience outweighs all the theory in the world
So let’s get the diagnosis, keep the labels and educate practitioners further on these conditions. The difficulty with this is that these are invisible conditions laced with inconsistencies and surrounded by misconceptions. The spectrums for ASD and ADHD are so vast that all the theory training in the world isn’t going to be enough. It is only from experience, in depth knowledge of the child and trial and error that real progress is made.
It is an enlightening experience to get into a two hour argument with a child with high functioning autism who has got a detention for appearing to be oppositional and refusing to follow instructions. However when you get to the bottom of it, the reality is that they have misunderstood what was asked of them initially, repeatedly questioned the teacher and then afterwards were desperately trying to explain themselves because they don’t want you to think bad of them. These experiences are what help you to learn to meet these children’s needs.
Assuming to know because you’ve had the theory training or taught one before when faced with children with these needs is a dangerous road to go down. As a parent of an autistic child, there is little more annoying than hearing a phrase like ‘My sisters boyfriends neighbour has an autistic kid, so I know all about that!’ No you don’t! You may know something about the other child albeit very little but you have never met my child and hence know nothing about them. What works for someone else is not necessarily going to work for my child.
The only way we can truly be effective is to have an open mind and treat each child as an individual regardless of their label or their need. Yes, there may be common traits and strategies that have been effective and it would be crazy to dismiss them. Just don’t hang your hat on them!
It’s about trying to get into and understand the mindset of the child and moving away from the idea that their thinking is wrong. It’s not wrong, it’s different! Over time, many of these children will learn the best way to fit their needs into the expectations of society, but until they can do this we as parents and educators must move our mindset to meet them.
Being understood by the people who play pivotal roles at home and education is the most important thing. Children with additional needs will require, and should receive the support they deserve from outside agencies. Again, as both a parent and an assistant head, I have gained first-hand experience of just how hard it can be to obtain this support.
Quite often, systems get in the way – and if a parent doesn’t know how to play the game, it can be incredibly hard. Help will not be forthcoming without begging for it. It is only because my wife was so quick to identify our son Daniel’s needs and I have knowledge of the systems, that we were able to get him an early diagnosis and into a specialist nursery. Without these things he would have been sent to a mainstream nursery where everyone would have been unsafe and it would have been his first major “failure”. Sadly this is the way the system works, children have to fail before anything happens. Even then, without a diagnosis you cannot get help and support from services, but you can’t get the diagnosis without help and support from services. Go figure!
A parent or school will often try to be pre-emptive about supporting a child who they suspect has SEND, but will be faced with crazy waiting lists or fobbed off. Even when you have a diagnosis and have a referral to CAMHs or Occupational Therapy etc. you still need to fight tooth and nail for help from them, and without a diagnosis there is even less chance. Convoluted systems and an inability to meet demand makes everything a battle for the parents of SEND children.
In my experience, it often reaches a point when parents are exhausted because their child isn’t sleeping well, or they are injured and embarrassed because their child has become violent and lashed out through frustration; head-butting them and causing a black eye, for example. Or they are isolated because they won’t leave the house for fear of the looks and comments they get from people for having a child who is different and making strange noises, having meltdowns or trying to run off. Often, relationships between parents suffer as a result of these situations, making it even harder for the family as a whole to function.
When this is your day to day and then you still have to fight for every ounce of support you are entitled to it can become an overwhelming and impossible task. And if a parent is doing the amazing job of managing these things and still coping then chances are they will NOT be offered support, because they don’t appear to need it!
This is a massive flaw in the system – everything is reactive and efforts are made to repair things after they have reached breaking point instead of being proactive and supporting early. It can be likened to not treating an illness, and instead waiting for organs to fail, performing surgery and having to do years of intense rehab. Conversely, treating the illness early and performing regular check-ups would have been more effective, as well as cheaper for everyone! Every professional from every service I speak to knows that it is much easier to intervene and help early than to try to repair a situation that has hit crisis point, but they find themselves blocked by systems that are outdated and ineffective.
It’s the same in terms of education. I’ve been to meetings with the aim of getting appropriate support for my child. This has involved sitting with his class teacher and describing all the worst things about him in order to convince a stranger that he needs additional funding. We cannot mention the amazing qualities and personality he has or the enormous progress he has made with his limited communication and social skills. We have to focus on how dangerous and violent he can be and that he can’t talk or isn’t toilet trained. It’s a heart-breaking position for a parent in that you have to paint your child as the devil just so you can get them the right help.
I am regularly in meetings where I meet a new pupil and listen to them describe their school experiences so far. More often than not, they have been very negative because of their additional needs. They have always been a square peg that people have tried to fit into the mainstream “round hole”. This has led to a miserable child who has been set up to fail by the system.
Children come to me with a wide range of complex needs but they are very often compounded by added anxiety. They believe there is something wrong with them and that it is wrong to be different. Having a child enter school with that kind of anxiety and negativity on top of any additional needs is a very difficult starting point. It is often a comfort to be able to tell them why they are different and that being different is ok.
A child with diagnosed ASD, ADHD, Conduct Disorder, Tourettes, Sensory Processing Disorder or any others will still have enormous challenges to face. The diagnosis won’t change that, but it will signpost them to services, give them and parents a little piece of mind and hopefully get them extra support down the line.
What if the medical professionals aren’t sure what to diagnose? Unfortunately it’s not often cut and dry. These kinds of conditions often come in different levels of severity or will be a combination of more than one. They have so many crossovers with each other that pinpointing the need may be really difficult. Then when attachment is thrown into the mix; which has many of the same traits as the others and is an absolute minefield of behaviours, it makes the diagnosis even more challenging.
This is the position I am finding myself in all too often, because it isn’t easy to diagnose an exact difficulty or it isn’t severe enough to be clear the child isn’t given a diagnosis. They get a complex needs label and sent to an SEMH setting. I talked in a previous blog about how my setting has moved from being a traditionally ‘naughty boys’ school and is now something completely different. We are absorbing many of these children with moderate, undiagnosed needs.
This is the role that we have been cast to play and I believe we do it well, but it is a massive challenge to identify what the needs of the child are with such a broad label and little guidance to go on. It is because we try not to label, treat each and every child individually and use a holistic relationship based approach that we can get past the behaviours that have become a negative side effect and find the real difficulties.
But sometimes we are not enough on our own. All too often, we are already playing the role of parent and teacher – we cannot be doctor and therapist as well! The therapist I listened to at the conference said that we, as teachers, know far more about the child and can offer them far more in their day to day situation than they as therapists can offer when meeting the child for an hour a week. I totally agree – but if we are being trusted with that then why is it when we flag up something that goes beyond our levels of expertise we aren’t listened to?
I mentioned attachment earlier and it plays an enormous role in our school. It means that children have experienced some early and ongoing trauma. Knowing that we have to work closely with parents means that we are not always the people the children can talk to and they might need someone independent. Not to mention the fact we are not trained psychologists who have done 7 years at university. We are often skilled enough to identify a need but the therapy must come from a professional.
Far too often we learn to work effectively with a child who doesn’t have a diagnosis; has a mixture of additional needs or significant attachment difficulties or both. We get them to year 11, through their GCSEs and a place at college only for them to then fail because the support wasn’t good enough. The college wasn’t prepared for them. Very often this is because they were back to being a square peg in a round hole for which a missing diagnosis is partly to blame.
We have a great track record for breaking through the behaviours that have been used to mask difficulties and identify an additional need of the child. We make progress where others have not, we have experience and knowledge and only push for support when we feel it is absolutely necessary – but just like the parent who has to fight for their child at every turn, we are constantly up against barrier after barrier.
So, should we put labels on children? No, I don’t think so, but if they help to get the support needed then I can live with them!
Do we need diagnosis and support from other agencies? Yes, for a multitude of reasons! Whatever their needs are, a child is a child and support should be there if and when it is needed. The parents and the teachers may or may not be experts in those medical fields but they are experts in that individual child and surely that should count for something. No, actually it should count for everything!
Graham would like to invite ideas for contributions, so if you have any SEND issues you’d like to hear from him on, why not get in touch with Axcis today? And don’t forget to register or check out our jobs pages if you’re seeking SEND work or staff!