Fighting for Xander’s diagnoses

Xander’s neurodiversity was brushed off by doctors as a symptom of his profound deafness, but mum Kate wasn’t going to stop fighting until her son had the diagnoses and support he needed.

Mum Kate has her hands full with her two sons, Xander (10) and Rowan (8), who both have additional needs. “Xander is profoundly deaf and has attention deficit hyperactivity disorder (ADHD), autism, generalised anxiety disorder and a sensory-related eating disorder called avoidant restrictive food intake disorder (ARFID),” Kate explains.

“Xander was identified as severely deaf when he was nine days old. Even though his dad George is a child of deaf adults (CODA), and there was always a potential that a child of ours would be deaf, I was heartbroken when I found out. But that only lasted a day or so and then I kicked into full advocacy gear.”

After Xander had his first hearing aids fitted at just over a month old, Kate worked hard to make sure he got used to having them on, but then his hearing got worse. “Just before he was two, Xander’s hearing suddenly dropped for no reason,” Kate explains. “They couldn’t fathom why. He was identified as profoundly deaf and we were offered bilateral cochlear implants for him. He had his first cochlear implant surgery when he was four-and-a-half. He’s had a total of three surgeries now because the implants have failed twice.”

Once the family had the support and hearing technology in place for Xander’s profound deafness, it became clear there was something else affecting his behaviour. “He was a very unusual baby from the very beginning,” Kate says. “He never wanted to be cuddled, he wanted to lie in the cot by himself and be left alone. When he was playing, he wasn’t imagining, he was lining things up. But absolutely everything was blamed on his hearing.

“Every time I went to the GP with questions, their response was always, ‘It’s because he’s deaf.’ He was three-and-a-half when he was diagnosed as autistic. It was very obvious to everybody by that point and, thankfully, the National Deaf Child and Adolescent Mental Health Services (Deaf CAMHS) were involved in his diagnosis and have been brilliant the whole time.”

However, getting Xander’s ADHD diagnosis took a little longer. “With ADHD, they can only diagnose from age seven,” says Kate. “It was already very clear at three-and-a-half that something was going on, but we had to wait to see that he wouldn’t grow out of it. Deaf CAMHS were there for that journey too.

“At any point in the day, it can be any of his additional needs that are affecting him. You can’t extricate one from the other. It’s very difficult. On his Education, Health and Care (EHC) plan it asks for a primary and secondary need but you can’t distinguish between all of his needs. The hearing impacts the autism, the autism impacts the hearing and then the ADHD is on top of all that.

“The hardest for us to cope with is the ADHD. His autism can be quite predictable, as long as the routine is the same and he has his normal stuff, then he’s fine. The communication barriers aren’t there at home because we’ve been learning sign language and everything’s got subtitles on. But the ADHD makes him so impulsive, excitable and a bit too much.”

After starting primary school, it was hard for Xander, who still didn’t have an ADHD diagnosis. “At school he’d be desperately trying to mask it while being told off and forced to sit down,” says Kate. “He’d pick his fingers, jiggle his legs, bite his nails and try to be ‘normal’, but he was miserable and not coping. Now his teachers are aware of his ADHD, he’s allowed more sensory breaks in order to be himself.”

It’s been a long journey to get Xander to where he is now and having his autism and ADHD diagnoses has helped. “It’s not a choice that the child is making to be this hyperactive and impulsive, it’s actually a physical difference in their brain,” says Kate.

“My main piece of advice for parents of neurodiverse children is to get the diagnoses officially. I know that lots of people are worried about their child being labelled, but the fact is that without these labels they don’t get the support that they need. Essentially, it’s not about how you feel about it, it’s about what they need. You can’t unlock that door without it.

“For us, it’s meant that Xander has access to stimulant medication, which has made a huge difference to his concentration at school and the success of his interactions with his peers.”

While the family fought to get diagnoses and support for Xander, they were also looking after and advocating for their younger son, Rowan. “Rowan requires more physical attention than Xander because he has tubulinopathy, which is extremely rare, and he’s a wheelchair user,” explains Kate. “His brain didn’t form properly when he was growing in utero which has resulted in profound learning difficulties, global delay, autism, epilepsy, cortical visual impairment (CVI), dysphasia and hypermobility. Rowan is non-verbal and vulnerable. He’s cognitively one year old.

“The two boys have such different additional needs, which means that they bump along simultaneously in the same house. They don’t really play or interact with each other.”

It can be tough for Kate, but she’s focused on doing the best job she can for her boys. “They need you and you have to be their advocate,” says Kate. “You have to have very thick skin and be there for them no matter what.”

Winter 2022 Families magazine