Neurodiversity and me.

By Gill Whalley, March 2024.

This is a personal blog for me and one that I have deliberated about writing. However, I believe that it’s important that we start to talk more about neuro diversity; I’ll try not to waffle!

I have known I was dyslexic since primary school, 30ish years ago when dyslexia wasn’t really spoken about. I got “lucky”; I had a teacher who spotted I was struggling and parents who were ahead of their time. I was also fortunate enough that they paid privately for my assessment and fought for me to get good support.

Fast forward to now, and parents are having to continue to support our children to have assessments for ASD, dyslexia and ADHD and speed up the process using private services.  We have to battle with health and education to make sure their needs are being met. Our experience is not uncommon. I know so many parents who work so hard to help their children receive a diagnosis and then have to have further battles to get the help they need. This is frustrating and time consuming; we have all shared frustrations about having to do our own research, know our rights, challenge professionals, travel to many appointments, take time off work, wade through complicated reports, all whilst reassuring our children and helping them understand the journey they are having to go through.

Despite how frustrating this is, I do know how lucky we are because we have the support, knowledge, time, and cognitive ability to navigate this process. We feel confident that we will overcome any difficulties. I then compare this to many of the parents placed in Amber Family who have gaps in education, no diagnosis, or a misdiagnosis, have experienced poor parenting and chaotic lives. It surprises me how few parents ‘have’ an ASD or ADHD diagnosis and if they do, this is unmanaged or mis-understood by the adult. Often parents in placement have many experiences and behaviours that jump out as a neuro diverse; poor behaviour at school, no qualifications, chaotic behaviour, substance misuse, criminal behaviour, low self-esteem, poor communication skills, difficult relationships – the list goes on. Many recall their own parents having similar experiences too.

I can see that if I hadn’t been lucky enough to have a family that supported me, opportunities, and an education that I could access, I know that I would have undoubtedly had had a different life.

I hear stories from the local primary and high school and to me it’s glaringly obvious that children are being let down and in 2024 we STILL label children as “naughty”, “trouble makers”, we punish them, we make them feel worthless, we set expectations that they will never achieve, and we don’t celebrate their qualities and the contributions they make. It’s the same children that miss out, because like I said before, fighting for assessments and support is complex and we must accept that some parents simply can’t do that as they don’t have the confidence, the knowledge, the time, support, or the finances.

In our service we rarely support parents through an ASD or ADHD assessment and whilst I know this would not be a quick fix for a parenting assessment, I often feel it would be more beneficial or as beneficial as a psychological assessment. Understanding a parent’s functioning and how to work with them would support change, learning, and improved outcomes in the short and long term. Having this knowledge would also support their children’s medical history as they develop either in or out of their family’s care.

It is not JUST the diagnosis that is needed, it’s the understanding of what that means to the person and how it affects them.  So often if one of our resident parents has a diagnosis, this is all it is, a “label”. There is rarely anything else to evidence that the person understands their diagnosis or that they have explored how it affects them, nor is there guidance about how best to overcome difficulties.  This is a common issue and again, from personal experience and from taking to friends about their children’s experience, its similar. The support after a diagnosis is poor and there is minimal support or after care. A diagnosis alone is redundant if nothing happens after.

Over the years I have personally battled with my opinion about “labels”, unsure if I like them or not. I often change my mind. However, at present I personally feel the benefit of them. I have seen the relief of my own children when they have been told that, for example, they are autistic, as they start to understand and embrace this “label”, it’s also been far easier to ask for support and reasonable adjustments. I started off this blog sharing some reservations about sharing my own personal journey as more recently I received my own ADHD diagnosis and whilst I didn’t think it would have much bearing on me, it has. I already feel like I have a greater understanding of myself and want this to become a springboard to help others. I have reflected why I even considered keeping my ADHD a secret? Why would I hold back on sharing this? Then I remembered that this is exactly how I used to feel about my dyslexia. I had forgotten about how I used to feel about this, as for so long I have (over) shared about my sensationally bad memory, spelling and maths. I have concluded that I feel like holding back because I know that ADHD is misunderstood and there is some stigma attached. I hate the thought of being misunderstood and I don’t want anyone to think me incapable! I have had to tell myself it’s time to get over this and it’s only by speaking out, that judgement and opinions will change.

I hope that one day we won’t need a label, or a lengthy diagnosis capturing everything we can’t do compared to others, and any negativity about neurodiversity will no longer be a thing beyond a history lesson. As there doesn’t seem to be a robust system to meet peoples needs even with a diagnosis, I am realistic about how far off we are from losing labels! So, we must start by reducing the gap for children and adults who will benefit from an assessment. We must improve understanding about neurodiversity so as professionals, we can accommodate, understand, and make reasonable adjustments and support the personal development, understanding and self-management for the people we work with.

At Amber Family, staff training about neurodiversity and making strong links with other professionals and services is high on our improvement agenda. We have every intention of helping improve outcomes for all the adults we have in our care and recognise this must be done through education and understanding.