After talking to a worried parent this morning, I decided it was time to express my views on formal diagnoses. Is it worth doing? is it really going to help? Is it counter productive?
The objective of this post is to reassure anyone who is either trying desperately to get a diagnosis or shying away from one, as well as helping to explain how to access the support you are entitled to without one. Bear in mind that these are MY views, based on OUR experience – they may not be applicable to everyone.
On one hand, we have those who say that it’s alphabet soup label-wise these days, and those who simply dismiss parents who get diagnoses for their children as needing to impose “better discipline”. On the other hand, we have people who battle for a diagnosis for years, and feel that nobody is listening to them: their child displays no “symptoms” at school or even out and about, holds it all together and then explodes at home.
Then, we have paediatricians who, through no fault of their own, over-diagnose within their personal area of expertise, without looking at the full picture, or under-diagnose because they haven’t seen what happens when children are behind closed doors. After all, appointments with NHS specialists, who have limited diagnostic horizons, are not going to be particularly thorough due to the constraints they have to work within.
However, our children may need help at school – but is such a broad-spectrum label as ASD or DCD really helpful? Will it pinpoint the exact help the child needs? My personal opinion is that it won’t. These are convenient labels imposed on our children by paediatricians. They are supposed to give parents “closure”, or an explanation, and they are supposed to help get an EHCP or explain what difficulties a child has… but they don’t – because there is a full NEURODEVELOPMENTAL spectrum, which can tick any of many boxes, in any combination.
In any case, once a child has been diagnosed… then what? Does anyone then help parents to cope? Does anyone give helpful parenting tips or help sensory issues and anxiety to melt away? Does anyone help the child get extra help at school? Does anyone give parents a hug and say it will be OK, you are on a journey and your child will get there? No. Parents are very often simply left to cope and seek help on forums or through support groups. Not only that, but ASD and DCD (plus all the other labels) are such broad spectrums of symptoms that they often don’t pinpoint where the exact difficulties lie.
Undoubtedly, schools need to know where the challenges lie, but it is often far more helpful to look at those individual difficulties first, rather than try to lump all the symptoms into a diagnosis. Otherwise a child’s difficulties can all be put down to “autism”, and the fact that they have auditory processing and developmental language disorder may have been missed altogether. In fact, by addressing the underlying difficulties with reflex integration, or by supporting a child’s underlying anxiety, many sensory and behavioural challenges may become barely noticeable.
Additionally, SENCos can only do what they can do – and they cannot be experienced at absolutely everything. They are under extreme pressure these days, and the onus should not be on them to flag things up. If you are concerned, do it yourself: don’t wait for the school to do it. Join an EHCP support group on Facebook for advice on how to do this, or contact IPSEA or SOS,SEN!, or use the model templates on the IPSEA website. You can also book support phone calls with IPSEA, or speak to your local SENDIAS.
A cautionary tale, when dealing with SENDIAS: they are employed by the local eduational authorities, and while they *should* offer completely independent advice, anecdotally, this is not always the case.
If you can afford to, it is well worth getting an educational psychologist to assess – once again, do not get hung up on official labels for things, as they are not required to get an EHCP. It is a very unfair fact that being able to produce private evidence DOES put those who can afford it at an advantage. However, what you can do in lieu of a private assessment is gathering facts and figures from your SENCo. To do this, ask nicely for snapshots of progress over time, or make a Subject Access Request under GDPR.
Despite private assessments with EPs, OTs or SALTs being an expense you shouldn’t have to bear, it is also worth knowing that these reports also serve as important evidence for claiming Disability Living Allowance – for which, once again – you do NOT need a diagnosis of any kind. DLA is all about a child’s needs, in terms of care and mobility. You will find excellent advice on completing the daunting and complex DLA form here. Claiming DLA opens doors for you and your child: you can use their money to pay for therapies that help them. For example, some pay for private swimming lessons, horse riding, or private therapies such as speech and language therapy, occupational therapy etc. So, it can be very useful to pay for some form of private assessment to set the ball rolling. I thoroughly recommend the charity Bibic, in Somerset for this. They conduct a two-day assessment – they do not give a formal diagnosis, but identify with extreme expertise your child’s areas of need, and produce one of the most comprehensive and helpful reports I’ve seen from all the professionals I’ve ever dealt with. Their report is extremely helpful to SENCos and parents alike. The cost has sadly had to increase to £550 for an initial assessment, which is only slightly cheaper than a private EP report, so in the long term, it may be more helpful to see an EP privately. However, Bibic allow payments in instalments, so its worth calling them for a chat.
A final word on DLA is that if you call 0800 121 4600 to speak to a DLA advisor, and ask them to send you a form, your payments will be backdated to the date on which you requested the form, so this may help in partly covering the cost of a private assessment.
It is also a common misconception that you need a diagnosis – or to have extremely “severe” needs – for an EHCP, because an EHCP assessment involves assessing your child’s needs across the board, picking out their particular barriers to learning and making recommendations as to how to overcome these barriers to learning and meet their potential.
In fact, the legal test for an EHCP is outlined in the Children and Families Act 2014:
- whether the child or young person has or may have special educational needs (“SEN”); and
- whether they may need special educational provision to be made through an EHC plan.
All you have to prove when you request an assessment is that your child meets these criteria.
The EHCP document will then set short, medium and long-term SMART targets in order to ensure success for your child, with the right provision for THEM as individuals. Very important! This is not just academic, but also for social and emotional, sensory, physical and health needs that may be barriers to learning.
An EHCP is a legal agreement between parents and the local authority on what provision should be in place in order to put a child on as level a playing field as possible with their peers, which also means that any therapies that your child needs should be included.
It is also really important to mention specialist education, and the fact that many independent specialist settings look at an individual’s needs – not their label, whereas local authority maintained settings often need a diagnosis mentioned within the EHCP.
Getting back to the point – and this may come as a massive surprise – but nearly every single one of us has symptoms of neurodiversity or developmental hiccups. We are ALL on a Neurodevelopmental Spectrum, but some of us display symptoms of dyslexia, some have attention issues, some are obsessive, some are impulsive, some so anxious that we can’t leave the house.
This is because every one of us is holding onto a combination primitive or neonatal reflexes. The extent to which our combinations of reflexes are retained is what makes us individuals! Every decision and action we take is driven by our neurology.
By working with these reflexes, we make new connections in the brain, connecting our primitive lizard brain to our rational forebrain, and enabling us to regulate emotions and behaviour, to feel safe in the world and to function and move forward with our lives.
For example, anxiety is our Fear Paralysis reflex kicking in and telling us that we are not safe, and to be on our guard. Impulsive, inappropriate behaviour is our Moro, reacting and projecting outwards just like a baby cries when it takes its first breath of life.
So, when a parent comes to me, just as I went to our neurodevelopmental therapist for the first time five years ago, and frets about the label that has been imposed on their child – or that may be imposed on their child, I reassure them. We do not talk in these terms at all in my clinic. I understand that not many people are NOT neurodiverse! What I do is help people with their challenges and struggles by teaching them to recognise when particular movements will help them.
Please also understand that whether you choose to get a label or not is entirely up to you. You may find that it really helps to fit you or your child into a category.
I want to reassure you that a diagnosis is not necessarily the key to the rest of your child’s life. A diagnosis can change if you work with reflex integration, or, sometimes, even if you do nothing at all!
If you would like to know more about reflex integration for learning, emotional and behavioural challenges, please contact me at emma@move2connect.com
Agree with a lot of what you say. For us, getting an official ‘diagnosis’ was helpful. It gave us a little bit of peace-of-mind – we aren’t simply bad parents or imagining/overthinking problems. But as you say, the diagnosis itself isn’t the important part, it’s the recognition that there is a real and tangible need for help. Reassuring in a perverse kind of way.