Walking the lonely path to diagnosis, with STEPS by your side

The journey to diagnosis can feel long and lonely, with many parents left ‘in limbo’.

Accessing peer support for parents is vital:

· to signpost and access knowledge for advocacy – “my child isn’t just naughty”

· for validation for mental health support – “my parenting isn’t to blame”

Simple changes at school and home can help build self-esteem.

Apps like STEPS can help parents:

· easy to follow

· a helpful mix of both professional advice and peer validation

· useful built in tools to record information for the assessment process

You are not alone, even if it feels that way. Digital interventions like the STEPS app are a much-needed lifeline for struggling parents.

For many, the journey to diagnosis can feel very lonely. That nagging feeling that you have somehow let your child down, coupled with well-meaning professionals offering “parenting training”, can make parents feel at fault for their child’s a-typical behaviour. With no clear lines of communication and a glaring lack of signposting to support networks between the time of referral and the validation of a diagnosis, parents are left in limbo: unsure of how to cope; of how long their wait will be; or of what they may discover at the end of the journey. Will their child receive an ADHD diagnosis, or is it all really due to parental failings on their part?

We are all told that “it takes a village” to raise a child. But if that village either doesn’t accept or understand your child’s needs, it’s very easy to feel alone, even when surrounded by people. Without that community of parents who are going through the same experience as you, it is incredibly hard to access the peer support that you need, or even to know where to look. Spending time with friends and their “well-behaved” neurotypical children can incorrectly validate feelings that either you’re not doing it right or that there is something wrong with you or your child, making you less likely to share your family’s experience or to seek out more information on ADHD. Whereas, finding parents who are going through the same thing will have the opposite effect and provide much needed peer support and encouragement at those times when you might be feeling inadequate or overwhelmed.

A lack of information about ADHD and the various ways that it can present leads to a belief that these children are just naughty, requiring firmer discipline to change behaviours. The truth is that all behaviour is communication, and understanding why kids are acting a certain way is the key to unlocking how best to support them. Simple changes like adding movement breaks into lesson time can reduce the tension that a young person experiences during the school day and therefore the inevitable “coke bottle” effect of fizzing over with emotions at home time. It is estimated that those with ADHD receive 20,000 more corrective or negative comments by the age of 10 than their neurotypical peers[1], reinforcing feelings of low self-esteem. As parents, it’s our job to advocate for our children in a world where inclusion isn’t a given. Unlocking our own support networks is vital to our ability to give a voice to our children and their needs.

Following an NHS ADHD diagnosis, many parents are offered an ADHD parenting course, to better understand their child’s diagnosis, however, having access to this information prior to diagnosis would be so useful, both from the point of view of a parent trying to help their child and understand and manage behaviours, and also from a mental health perspective for those parents who are really struggling with the idea that there may be something different about their child and either not understanding what this means or blaming themselves.

As a parent of a neurodivergent child, with lived experience of the long waiting lists, I have been keenly involved with the OPTIMA trial, hoping to find a way to support other parents going through the same experience as us. I think that the STEPS app provides a refreshing insight into other families’ lives, offering the reassurance that there are others who have been struggling with behaviours associated with ADHD, as well as stigma from family and friends. The structure of the app is easy to follow and provides a helpful mix of both professional advice and peer validation, as well as a private forum to keep a diary of any concerns or indicators that they recognise, which may be helpful to refer back to when speaking to professionals during the assessment process.

During the interview process of the OPTIMA trial, many parents reported that the STEPS app had provided much needed support and information to them, during the long waiting period between referral and assessment. We have taken some direct quotes from these interviews to illustrate the emotions that parents felt upon using the app and the positive impact that it has had on their families:

“After my daughter had had her worst tantrums, I was like ‘Someone give me some help!’ and then I would go through the app and it was quite emotionally supportive – a boost, you know – like, you’ll get through this, it’s fine”.

“The STEPS app is brilliant. I log on and look at other people’s experiences and take what they do and see if it works on my son. All kids have different strategies that work, so some do and some don’t but it has opened my eyes that I’m not the only one out there going through this. There are other parents, struggling the same way I am and I’m not alone – we’re all in this together basically”.

“At school, no one knows about my child. Until they have a breakdown and then they’re like ‘Oh my word, are you ok? I’ve never seen him like that!’ STEPS is like a friend where I have these parents all going through the same situation as me. I can relate to them and I feel better that I’m not doing something bad. I’m actually doing the right thing with my children”.

“Even though I knew most of the information in the app, because I work in that field, it was useful to give me a reminder to breathe, try to stay calm and be more mindful of what’s happening and how my child might be feeling right now. As a parent it can be really hard not to be embarrassed by erratic behaviour, but the app reminded me that it’s about me doing what’s best for them and supporting them. What everyone else thinks is their problem, not ours”.

“There are such long waiting lists for this kind of support and advice and having it in your phone, at your fingertips is going to be so helpful for so many parents. It would be great if this could be expanded into more information for children from their experience too, to make them feel less alone on this journey and boost their self-confidence”.

It’s clear from these interviews that an intervention like STEPS is much needed and that many parents are feeling lost, lonely and adrift in the long months spent on the NHS waiting lists. As a parent myself, who has repeatedly been made to feel that I am failing my children, I know it’s a very lonely path to walk before you get that validation of diagnosis. I strongly believe that an app like STEPS, which provides users with both peer support and reassurance along that journey, as well as access to professional fact-based evidence, will be invaluable to parents struggling with the lack of information and help available, prior to a diagnosis. For many, the buddies in the videos would be the first move towards feeling less alone and finding a real-world tribe to help navigate the journey ahead. While it may, at times, feel like we are walking this path alone, just knowing that we aren’t the first to do so and we certainly won’t be the last, can be the helping hand that we need to take the next step.

Claire Griggs PPI Panel Member

Reference