This article was written by a Qwell mental health writer, Milly. It contains the following themes: neurodiversity, challenging behaviour, medication, relationships, adulthood, and parental mental health.
Finding balance through adolescence
In the complex journey of parenthood, guiding a neurodivergent child into adulthood presents a unique set of challenges and rewards. Neurodiversity refers to the range of ways people’s brains work. Everyone’s brain is unique, and some people are referred to as ‘neurodivergent’, meaning their brain works differently than a ‘neurotypical’ person.
We spoke to Nita about her experiences of navigating the balance between fostering independence in her neurodivergent son, Tyler, while ensuring his safety as he grew older. Nita also shares the impact this journey has had on her own mental health, offering insights and advice for other parents on a similar path.
*Nita and Tyler are pseudonyms.
A difficult diagnostic process
“I knew from the moment my son was two or three months old that something was a bit different. The health visitor thought he was just very advanced for his age, but he was so full on. I even changed my job to start working as a childminder so I could look after him myself, as I felt he would struggle elsewhere. His behaviour was challenging and aggressive at times, and I felt customers were worried about his actions toward their children. He used to bite a lot because he was frustrated.
“I then started to question if he could be neurodiverse. So, we went to the GP and they referred us to the community paediatrician. They used an autism diagnostic tool on Tyler, but he didn’t show the ‘typical’ signs of autism in the interview, he went undiagnosed. This felt disappointing.
“Throughout school, Tyler used to rule the classroom. He had some less experienced teachers who didn’t challenge any behaviour, and I think he became quite unbearable because he wasn’t coping. But then this new teacher came in who was experienced, and she was brilliant. She knew how to handle his behaviour and was able to put things in place to help him cope. This led to a referral to Child and Adolescent Mental Health Services (CAMHS) being made. We saw a fantastic psychiatrist who diagnosed Tyler with autism and attention deficit hyperactivity disorder (ADHD) when he was 12.”
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Autism:
a spectrum disorder that impacts how people interact with others, learn, behave, and communicate. It’s often characterised by challenges with social communication and repetitive or restricted behaviours. Autism can vary greatly between individuals.
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ADHD:
a disorder that impacts behaviour. It’s marked by difficulties with attention, hyperactivity, and impulsiveness beyond what is typically observed for an individual’s age and development level.
Mixed emotions
“I was surprised to hear a diagnosis of both ADHD and autism. The psychiatrist explained that Tyler didn’t always present typically because of this, making a diagnosis hard. The traits of each condition were almost counteracting each other – there’s an autistic trait where he’s hyper-focused and fairly rigid, whereas part of his ADHD is saying ‘be random and impulsive’. It made things really tough for Tyler.”
“We felt relieved to finally get a diagnosis, but also guilty we didn’t make it happen sooner. Yet we were frustrated, as we tried and constantly felt we were getting nowhere. We felt judged for being bad parents, but I know I did the best for Tyler.
“Tyler was prescribed medication and I initially was really upset about it. But in hindsight, he wouldn’t be able to get to where he is now, doing a degree, without it. Emotionally, going through all of this was so immense and difficult at times.”
Balancing independence and safety
“Throughout teenage years and early adulthood, we’ve had to balance supporting Tyler’s independence whilst also keeping him safe, which hasn’t been easy.
“Tyler can have outbursts and challenging behaviour, which puts himself and sometimes others in danger. As he’s gotten older, he’s gained independence, but he’s not always responsible enough to have that independence. For instance, he made the decision to take over his medical care at 18 as a way of flexing his autonomy, but he struggles with things like ordering his medication. Without medication, Tyler can’t focus, so this was really stressful for us.
“He understandably wants to do typical adult things like get a driving licence so he doesn’t rely on us. But again, he gets very stressed trying to understand directions and we worry about him driving safely. We keep a track of his phone so we know where he is if he gets into trouble. We don’t care what he’s doing or who he’s with, we just want to know he’s safe. It’s those practical things, but he interprets it as if we’re trying to control him.
“He also wants a relationship and sometimes goes on dates. I’m often concerned he’s putting himself in situations where he’s vulnerable, because he might not pick up on ulterior motives. He also may not understand when he’s being inappropriate and this could put him at risk. We try to advise him on how to be safe in these situations, but it’s stressful.”
A turning point
“There was a slight shift after a big meltdown. Tyler had been out with a girl and refused to communicate with us. We tried to call him and eventually, he came home furious because we ruined this date. He got really upset, but I think he understood why we were doing what we were. It led to a big conversation about how we could make some changes to help him feel more able to do normal ‘adult’ things, but safely. For instance, we made his room into a more independent bedsit with a sofa and a fridge, letting him have friends or girls around in a safe space. Those changes felt like a reset.”
Continuous learning and communication
“Throughout teenage years and adulthood, continuous communication was and still is needed to help us strike the right balance.
“We often talk to Tyler and remind him that he needs to keep working hard. I say ‘We’re so proud of how far you’ve come, but you’ve got to keep working hard.’ He’s trying really hard all the time, and he is learning. I just don’t think experiences always stay with him like a neurotypical person. He’s trying to figure things out each time. So it’s a continuous process of having conversations around boundaries and choices.”
Impact on parental mental health
“I’ve spent a lot of Tyler’s life on the edge of my seat. He’s unpredictable and that’s contributed a lot to my stress and anxiety. Friends don’t understand, and I feel I lost a lot of what I expected from parenthood. We couldn’t always do the ‘normal’ things because of Tyler’s behaviour, and I never had that closeness I expected with my son, because that didn’t work for him.
“It’s also impacted us as a family too. We’ve had to call the police more than once for Tyler’s behaviour and that worries his younger brother. I never thought that would be me. But I’m also very quick to highlight the positives, Tyler has many amazing qualities. It’s just a different experience to what I expected.”
Finding support
“I’ve found a really good support group which I’ve used over the years. It was in that group I found out about claiming for disability living allowance, free carer’s tickets, and autism-specific activities. I didn’t think I’d need these things, but that practical support is actually really helpful. There’s emotional help too – I can book in with a specialist support service and speak to them about anything I’m worried about.
“Looking after myself and getting support has been really important because it’s tough. You can burn out trying to look after a neurodiverse child. I also see the GP who helps me find other local support groups. These have been helpful, as I’ve been able to get advice from others in a similar position without having to explain myself. Sometimes just going on a discussion board and seeing you’re not the only one feeling that way really helps and makes you feel normal for having these feelings. Sometimes just knowing that is enough.”
Further information
Everyone’s experience of parenting and neurodiversity is unique. Whether you want to learn more about what it means to be neurodivergent, or find advice and guidance specific to you, there is a range of support available.
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[National Autistic Society (NAS)[(https://www.autism.org.uk/): provides information, parent-to-parent support, and advice services for those impacted by autism.
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ADHD Foundation: offers support and resources for individuals with ADHD, including educational resources and advocacy for families.
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British Dyslexia Association (BDA): provides information on dyslexia, assessments, and support services for parents and educators.
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Family Fund: provides grants for families raising disabled children and young people across the UK.
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SOS!SEN: offers a helpline, workshops, and advice sessions for parents navigating the education system with children who have special educational needs, including neurodivergent children.
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The Brain Charity: offers information, advice, and support for anyone based in the UK who has a neurological condition, as well as support for friends and family.
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Family Fund: provides grants for families raising disabled children and young people across the UK.
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SOS!SEN: offers a helpline, workshops, and advice sessions for parents navigating the education system with children who have special educational needs, including neurodivergent children.
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The Brain Charity: offers information, advice, and support for anyone based in the UK who has a neurological condition, as well as support for friends and family.
