The neurological condition ‘Auditory Processing Disorder (APD)’ is relatively unknown to many people, yet is far more prevalent than you’d think. Some research indicates it is present in 7-10% of children, rising steeply in children with learning disabilities.
APD is an incurable, lifelong disability that affects how the brain processes sound, including speech. A standard hearing test won’t diagnose APD as the disorder is not caused by hearing loss but by how the brain interprets sounds. Speech in background noise can be especially challenging, making something like “please raise your hand” sound like “please haze your plan.”
The early days
Like many parents and carers in similar situations, my husband and I thought there was something afoot with our eldest son from an early age. He was missing milestones, sensitive to noise, having meltdowns, and hearing tests were fine despite regularly missing the thread of conversations. The list went on.
And, like many parents and carers, we were perpetually told everything was fine. Friends reassured us that “it’s normal…all kids do that” and “it’s just a phase.” It wasn’t. As time passed, things grew harder. Social events got cancelled and days out disastrous, from running out of a pantomime on the opening note, to insisting on going back to the car five minutes after arriving at a farm and hearing a chicken!
We continually asked ourselves why we were finding parenting so hard. Are we doing this wrong? Are we bad parents?
Fast forward several years, and meltdowns were getting more extreme. Triggers were so minor and seemingly random. We got desperate enough to raise this with his primary school teacher in case there was an issue we didn’t know about, but no problems there. A model pupil, in fact.
Again, the consensus from others was that it must just be a challenging stage. A boy thing. An age thing. A hormone thing. Pushing boundaries. We were told a child couldn’t put on an act all day at school, as they wouldn’t have that level of control so young.
Unpicking symptoms
This brings me to my first pearl of wisdom. Children absolutely can mask. This is especially true if your child suffers from anxiety, and is also well known in girls with autism who are often diagnosed much later than boys.
Unsurprisingly, anxiety and self-esteem issues often go hand-in-hand with additional needs. Years of potential misunderstanding and being maligned for bad behaviour must take their toll. These kids can be the masters of masking for fear of being told off or standing out.
Although the cracks were starting to form, we continued to receive good reports from school while simultaneously taking the brunt of post-school fall out – sometimes known as “the coke-bottle effect.” We began to feel a little crazy, like we were the only people on the planet who knew something was going on.
My second point here is trust your gut. You are your child’s best and often only advocate. For us, it took years of chipping away, getting told not to bother pursuing a diagnosis (as “it makes no difference anyway”) to being triaged back out into the community for parenting courses. Yet more guilt that we must be terrible parents.
Point three. Assessments by professionals can be crucial. Interventions for different conditions can be worlds apart. Often multiple conditions are intertwined in a ‘buy one, get one free’ sort of deal, and there can be overlap in how they are managed. However, usually an array of support is needed specific to each child. One size does not fit all, given each child’s unique Venn diagram of needs.
Playing detective
Cue endless hours of Googling, researching, and thousands of pounds spent on private assessments ruling out conditions rather than in. Don’t even get me started on CAMHS wait times (literally 2-3 years in some areas), and that’s if you’re lucky enough to get past the gatekeepers. Every year, a step closer to those all-important exams and every year a child’s self-esteem chipped away.
Wonderful parent support like that offered by Scope or special educational needs and disabilities (SEND) social channels have opened my eyes to the broken system currently in place – thousands of parents desperate for help, bounced around the peripheries of the mental health system, unable to get access to assessments or treatment.
Eventually, after endless battling and being fortunate enough to be able to pay for assessments, we have been given a host of neurological diagnoses: auditory processing disorder, hyperacusis (extreme sensitivity to noise), sensory processing disorder (in his case affecting balance, judging force, and internal body signals), borderline dyspraxia/DCD, hypermobility, traits of ADHD and ASD, anxiety, slow processing speed, and a few other things just for good measure.
Finally, vindication
Today, we mostly understand what we’re dealing with and have embraced our SEND family (come on in… the water’s lovely!). Just under 1.5m school pupils in England have special educational needs, so we’re far from on our own.
Our son also knows it’s OK. He’s OK. There are days he finds it harder to cope and is drained from straining to hear conversations or teachers or just move about, but it’s not his fault, and he’s certainly not being naughty. Downtime, quiet, planning, and clearing the calendar are essential. He’s starting to self-advocate more too, getting braver at asking for help, and getting more support at school now we have diagnoses.
Point four? Despite, or even because of, such neurological conditions – whether genetic, environmental, or from physical trauma – these kids are wonderful and often gifted in other ways. Intelligent, creative, sensitive, and funny. I know my kid won’t be an accountant. He’ll be a David Bowie, a Banksy, or a Christopher Walken… which is awesome.
My last point here is that until a hidden disability like APD is more well-known, those of us who have an understanding must help spread the word. Most people have heard of Autism Spectrum Disorder or ADHD (even if they completely misunderstand what that really means) but there are a plethora of less well known neurological conditions affecting millions of people globally.
Charities and groups like APD Support UK are invaluable. Given that some GPs don’t even know what APD is, we’ve got a long way to go, but I’ve witnessed first-hand how SEND parents can be some of the most resilient people around, fighting for the support their children rightly deserve. So, stick to your guns. You’ve got this.
Photo by Milad Fakurian on Unsplash.
Education Copywriter 