Why do some young people miss out on gaining a diagnosis... or get the wrong one?

There are a lot of challenges for parents engaging with the education and health systems even when you know who to ask for help and also have some idea of what is on offer.

For many parents, this is an insurmountable barrier and the entry point is out of view completely. I meet some parents who have had challenges with education when they were children themselves and feel retraumatized when they have to engage and 'fight' for their child. This can come across as defensive and angry, but their own experiences had been challenging for them. For some, they had opted out of education altogether.

Fear and anxiety can present in different ways. They may also be trying to cope with their own challenges as well as having the energy and space to take on the mammoth task of getting help for their child. It often has an emotional and economic impact for families- changing jobs, taking on additional jobs, sleepless nights; and also sometimes trying to keep other siblings on cours.

Speaking with two parents in the last two days tells me that we are a long way from getting this right. Both were articulate and educated people, both at their wits end trying to get help for their children, both at a stage (but different ages) of their children almost disengaging with education. One child finds focusing and attending really hard unless it is of high interest to him but is a bright and engaging child and has great skills in some areas; the other child has had early challenges and was fostered in a number of settings. They now live with a wonderful family but the challenges seen have been pronounced as ASD/Attachment/Bipolar disorder/OCD. Words and diagnoses bandies around are dangerous terms to use. The parents have not been referred for any formal assessment. It seems amazing someone would say this without this occurring.

Both parents use the internet to search for information, talk to teachers to ask for help andare pretty confident people but are at a complete loss knowing how to get the support they require.

One of the children is 6 years old and the parents are appealing against the EHCP rejection.The latest form they have been asked to complete is with their child, and asks the following:

The odd thing about these questions is how can a young person know what they want for their futures or articulate challenges when these may be emotionally related and painful to discuss. If the young person knew about how to manage their difficulties then maybe they wouldn't need the help that is being asked of. How could a parent relay Makaton or Pecs on a form? How much is the content of this scored/taken into consideration/results in different responses. They really don't want to ask their 6-year-old these questions as they have disrupted sleep already and are concerned about the impact of doing so. They also have developmental language disorder and may struggle to understand phrases and terms such as difficulties/challenges/ what do you want from your education?

Why are these questions being asked? I know we need to listen to the Voice of the Child- but is this the right way to do so. There were no guidance notes with this form at all to help parents to engage with their child.

What are some of the barriers for some parents to gaining support for their children?

Many parents of children who potentially have one or more of the following conditions such as DCD /Dyspraxia; ADHD; ASD; DLD; Dyslexia; Dyscalculia don't know how to navigate systems.

You don't know what you don't know!

I hope this blog helps a little to gain an understanding of some of the barriers and provides the references to back this up. Let me know if you want to discuss ways Do-IT Profiler can help with this. We have tools that can identify 'learners of concern' and provide support and guidance to parents and teaching staff, as well as young people.

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