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Professor Amanda Kirby, CEO of Do-IT Solutions., Campaigner for Neurodiversity, Medic, Knowledge Translator, researcher

Barriers to a diagnosis

There are many issues that may act as a barrier to gaining a diagnosis of different neurodiverse conditions such as Dyslexia or Attention-Deficit/Hyperactivity Disorder, DLD or DCD. Budgetary constraints are often discussed but there are other reasons too…

Is getting a diagnosis important?

Diagnosis can provide an important step in validating parental and child concerns and is often necessary in order for the child or young person to access support and gain recognition that challenges are not because of ‘bad behaviour’. Taking a school/community approach can help mitigate some of the barriers below.

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 course.

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 bandied 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 and are 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:

Child/young person’s advice

This advice can be completed by the child/young person using the preferred method of communication e.g. PECs, Makaton with or without adult support.

  • What are your likes and dislikes?
  • What do you want from your education?
  • What are you good at and enjoy doing either in or out of school?
  • What challenges do you face?
  • What help do you need to manage your difficulties?

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!

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Barriers and Examples

Level of knowledge of parents
Parents may know there is something wrong but may not know exactly what it is or what needs to be done about it [1].

Ability of parents to vocalise their concerns and be heard
Parents with lower education levels and parents with lower annual family income report seeing more professionals before obtaining an Autism Spectrum Disorder (ASD) diagnosis for their child [2].

Stigma
Different types of Neurodiversity are more or less associated with stigma. For example, Attention-Deficit/Hyperactivity Disorder (ADHD) is often considered “just a label to excuse bad behaviour” [3,4].

Knowledge of teachers to identify
School teachers are far less likely to identify predominantly inattentive symptoms as ADHD, despite the fact that this is a clinically recognised subtype of ADHD, as the stereotype of ADHD focuses on hyperactive symptoms [5].

Knowledge of teachers to intervene
Research indicates teachers consider it more important to intervene with children with gross motor (movement) difficulties (e.g. difficulty with ball games or running)6. However, fine motor difficulties (e.g. struggling with buttons and laces, struggling to write) are also a symptom of Developmental Coordination Disorder (DCD) [7].

Knowledge of referral pathway
Pathways to a diagnosis of, for example, DCD can be hugely variable even within a single country [8-11].

Remaining in one place long enough
Approximately 10 % of Looked After Children move school within the school year, more than double the rate in the full school population (4 %) [12]. Repeated school moves may make it difficult for teachers to get to know children and spot their challenges.

Being in education
Children who have been excluded from school have much higher rates of Neurodiversity but this is frequently undiagnosed [13].

Gender differences
Female presentation of Neurodiversity is often different to male presentation. For example, females with ASD tend to have higher levels of social motivation than males [14], may have more age- and gender-typical interests [15], may ‘camouflage’ their social difficulties [16] and may exhibit lower levels of repetitive behaviour [17-19]. This often leads to their condition being missed [20].

 

REFERENCES

 


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.

For further information, click the yellow ‘contact us’ button at the top right of this page.

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