I couldn’t let October pass without recognising OCD Awareness Month.
There have been some wonderful posts online explaining what OCD is, and what it isn’t. I’ve appreciated every one of them. And I wish I’d understood OCD nearly as well before it came stampeding into our home and turned our family’s lives upside down.
At Family Avenues, we pride ourselves on speaking from a place of both professional and lived experience. So I wanted to share our family’s story. Not just to raise awareness of what OCD can look like, particularly in neurodivergent children, but to offer something equally important. Hope.
My daughter was seven when she suddenly became terrified of her bedroom.
It started with not being able to fall asleep unless one of us sat with her. This would last for hours, and she would become increasingly distressed because she was exhausted but her brain simply couldn’t switch off.
She was in burnout, as we quickly recognised.
What we hadn’t yet understood was what some of her presentation truly meant. We recognised neurodivergence, burnout and emotionally based school avoidance (EBSA), and attributed much of what we were seeing to those things.
But her fear of being alone in her bedroom progressed to a chronic fear of going anywhere near it.
Why? Because she’d been sick in there.
She didn’t enter her own bedroom for the following six months.
Our whole lives became consumed by avoiding absolutely anything she could associate with a time she’d been sick.
Ponytails were out because, “Don’t you remember, when I was five and I was sick, I had a ponytail?”
She could only eat from a certain plate, sit in one particular corner of the sofa, and get out of the left side of the car. The car itself had to be reversed into the left side of the driveway. She couldn’t wear tops with zips.
And then things became even more frightening.
Her intrusive thoughts were telling her she had to spit out her food rather than swallow it, otherwise she would be sick. She rapidly lost weight she couldn’t afford to lose.
There were other, much more distressing fears too. Each came with its own rituals, things to avoid and constantly changing rules she felt she had to follow to keep herself safe.
I didn’t understand what was happening. And I’ve never been so distraught or frightened for my daughter’s future as I was during that time.
In desperation, we paid for a private neurodevelopmental assessment. She was diagnosed with autism and ADHD, and we were told she was experiencing burnout.
None of that surprised me.
But I wanted to know what we could do about the intrusive thoughts, the fears and the rituals.
The psychologist looked at us with genuine concern and explained that many of the things we’d described were strong indicators of severe OCD. She urged us to seek psychiatric support before things became even more serious.
Of course, I immediately threw myself into understanding OCD.
And something unexpected happened. I realised that I’d experienced OCD symptoms myself throughout my life. Nowhere near to the extent my daughter was experiencing them, but suddenly I could recognise and relate to the intrusive thoughts, irrational fears and compulsions.
I bought the books, watched the videos and spoke to colleagues who understood OCD better than I did.
But ultimately, I couldn’t help her on my own.
As a family, we’d become so entrenched in accommodating her rituals to prevent overwhelming distress that we didn’t know how to safely break the cycle. We were doing everything we could to help her feel safe, but we were also unintentionally helping OCD maintain its grip.
We were referred to CAMHS and signposted to services offering Cognitive Behavioural Therapy (CBT). But finding someone with the specialist skills to work with an autistic child experiencing OCD proved incredibly difficult.
Thankfully, eventually, we found someone who could help.
By this point, eight months had passed since her neurodevelopmental assessment. We’d also managed to find a private child and adolescent psychiatrist. My daughter was formally diagnosed with OCD and prescribed medication to help with her symptoms, alongside melatonin to support her sleep.
The medication, together with her school’s introduction of a reduced timetable, helped her begin recovering from burnout.
And that mattered enormously.
Because by the time she started CBT, she was finally in a position to engage with the therapy.
It helped so much.
She began to understand what was happening inside her head and, importantly, that she didn’t have to do what her intrusive thoughts were telling her.
She started to ‘stand up’ to OCD. And each time she did, she became a little braver.
But we weren’t quite through it yet.
The OCD never fully went away. New fears continued to emerge and, around 18 months later, it felt as though we were back to square one.
She was referred back to CAMHS by her GP, her school and even her private psychiatrist, who advocated that she should be able to access the psychiatric support she needed through the NHS.
Unfortunately, the referral for medication support was closed without so much as a discussion with us.
But after another period of signposting, my daughter was thankfully able to see the same therapist who had helped her before.
She was a little older now and, although she was struggling significantly, she wasn’t experiencing the same level of burnout.
This time, the therapist introduced a more structured programme of Exposure and Response Prevention (ERP), a form of CBT specifically used to treat OCD.
ERP helps people gradually face the things that trigger their obsessive fears, while learning not to respond with the compulsions and rituals that keep the OCD cycle going.
I was more involved in the sessions this time, so I could support her with the work between appointments.
And between the therapy, the enormous effort my daughter put into it, and a new SSRI medication prescribed by her psychiatrist, things began to change.
The OCD loosened its grip. She stabilised. She became more confident. She started doing things that had once felt impossible.
And now, a year later, I frequently find myself talking about her OCD in the past tense.
Even when faced with things that would previously have triggered overwhelming fear, she’ll say things like, “I can read this book about that now, because I’m not scared anymore.”
And that’s the hope I wanted to share.
It’s been a journey. A long, at times terrifying and exhausting journey.
But OCD no longer controls my daughter’s life.
The fears and rituals that once dictated where she could sleep, what she could wear, where she could sit and even whether she could swallow her food are no longer part of our everyday lives.
I’m not saying OCD will never return. We can’t know that.
But if it does, we understand it now. We recognise the signs, we know what helps, and we know where to turn.
And perhaps most importantly, my daughter knows that those frightening thoughts don’t have to control her.
So, if OCD is currently affecting your life, or the life of a child you care for, I want you to know something.
OCD is not a personality quirk. It isn’t simply about being tidy, organised or liking things a certain way. It can be an incredibly frightening and debilitating condition, for the person experiencing it and for the people who love them.
But it is treatable.
And with the right understanding, specialist support and treatment, things really can get better.
I know, because I’ve lived this journey with my daughter.