“There’s something wrong with me!” my seven-year-old daughter sobbed, back in 2018. “Honestly, there isn’t,” I said, giving her a hug. “You’re just a bit sensitive, a bit anxious.” I wanted to be the reassuring parent, the mum who makes everything all right. But I was having the opposite effect on her: I was underplaying her distress, and it scared her, and shook her faith in me. How could she get any help if I didn’t accept there was a problem?
At the time her dad and I didn’t know our daughter was autistic. She was certainly not the easiest to manage, but she was also funny, bright, imaginative and popular at school. And although we were aware that she had intrusive thoughts, separation and sensory issues, a nasty phobia and difficulty controlling her emotions, her teachers, our GP, relatives and friends told us not to worry too much. “She’s a character! She’ll be fine.”
We hoped she’d grow out of her foibles and difficulties, or learn to cope in time, and meanwhile we could provide a safe, loving environment that would contain her. I don’t think we understood the extent of the pressure she felt under to disguise her difference and blend in, or the anxiety it was causing her. There was so much we didn’t understand.
Every neurodivergent child is different from the next, and other parents I’ve spoken to have gone on their own voyage of discovery to explore their child’s needs. We tried everything to help our daughter feel better: meditation, homeopathy, eye movement desensitisation and reprocessing, hypnotherapy, emotional freedom technique, primitive reflex therapy and a daily programme of self-help exercises to try and overcome her vomiting phobia – with varying degrees of success, mostly none.
Frustrated by Child and Adolescent Mental Health Services (Camhs) waiting lists, we forfeited treats and took out loans to pay to have her privately assessed by a child psychiatrist, and for family therapy and two years of individual psychotherapy. We felt an urgent need to find out more about the way her brain was working. At long last, she was diagnosed as autistic in 2021, when she was nearly 10.
By now, though, we were beginning to dread weekends and holidays. Our daughter’s behaviour was impeccable at school, but at home she vented the frustration she suppressed while attempting to appear perfect, and that could be explosive.
My partner, being a complementary therapist, never wanted to go the drugs route that some of our friends went with their neurodivergent children. He changed his mind when our daughter reached 11. Watching her growing anguish and inability to cope with life became too much to bear. Psychotherapy wasn’t working, so maybe there was a medication that could dial down her anxiety and make it easier for her brain to focus?
Hanging in the air when we finally got to see a team at Camhs was the implication that we weren’t accepting of our daughter’s neurodivergence. “You can’t cure autism,” we were told. Since you can’t shout at people, we had to grit our teeth and say: “Is there anything you can give her to help her feel better, even slightly? Because we’ve got an 11-year-old who is threatening to kill herself if she doesn’t get help.”
We know that being autistic is challenging for her, but it shouldn’t make her life a complete misery, should it? Lots of autistic kids are happy, or at least they’re not tortured, anxious or aggressive. It’s not the autism that we’re trying to change, but the cluster of secondary mental health issues that in her case seem to be a consequence of it.
In the meantime, we have learned not to make demands of her. We suggest going out for a walk, or to the cinema or to school, which she has been refusing to attend for most of this year out of sheer anxiety, but we don’t push it. We try not to react when she calls us names and swears at us. We don’t make a big thing of her self-harming (although all of the sharp things in our house are locked away). We try not to get upset (or show it, at least) when she says she wants to kill herself, or us. We do call the emergency services when she becomes violent, though. It seems to shrink her out of her rage when they arrive.
Things are a little better than they were three months ago, when she had a dramatic breakdown, or autistic burnout, and was admitted to an NHS child mental health unit for an extended assessment. That was a bleak time. We were hoping for a further diagnosis – perhaps the doctors could also see signs of ADHD or OCD? But no, it’s still “just” autism – although at least they’ve put her on a very mild dose of an antidepressant that may be helping. We see glimmers of an improvement.
Yet often it feels like we’re living in an alternative reality, where we can’t be a true version of ourselves with our own kid. She calls me a fucking bitch; I ask her if she fancies a piece of toast. It’s wearying to walk on eggshells for fear of arguments and abuse, and painful to listen to tortured monologues about wanting to die or self-harm. I can’t believe my ears sometimes.
What’s going on? One theory is that her autism makes it difficult for her to identify her feelings, so she can’t explain them, articulate as she is. Upsetting us is a way of making us feel as bad as she does, and then we’ll understand how terrible it is to be inside her brain, and how much she needs help.
I feel so sad for my beautiful daughter, and for us. Even though we’ve had wonderful times over the years, on some level we are all grieving the life we could have had without this torment of hers. And she has the added grief of the happy childhood she feels is lost to her.
I think my partner and I make a great team – on a practical and emotional level – and yet having an autistic child makes you doubt your parenting abilities. My daughter is always saying I’m a crap mum. The experts’ focus is on her dad and me – how we react to her behaviour, how we manage her – and sometimes they’re a mite patronising, or appear exasperated when we question their approach. Some are truly fantastic, though, and the knowledge they give you is transformative. The best therapist we’ve had by far grew up with an autistic sister. She’s lived it. We need more like her. She has taught us non-violent resistance and low arousal technique. We’re now learning about attachment theory and acceptance and commitment therapy. Everything helps. A bit.
We shrug off the difficulties with humour and a glass of wine, mostly. But sometimes I can’t help feeling like a walking mum-fail. Fortunately, I only have to think about our daughter’s twin sister and the fantastic relationship I have with her – the fun we have together, the affection between us – to remember that I haven’t done too badly parenting a neurotypical child.
Two different parenting styles, one set of twins – of course, neither thinks it’s fair. But if it saves our autistic daughter’s life, then we’ll go on pivoting and juggling, and learning as much as we can, and pushing the experts to think harder. We haven’t lost sight of the lovely person she is, and how creative and talented, under the layers of confusion and fear. We’ve promised ourselves never to stop to fighting for her happiness.
Caro Nightingale is a pseudonym.
• In the UK, the youth suicide charity Papyrus can be contacted on 0800 068 4141 or email pat@papyrus-uk.org, and in the UK and Ireland Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is at 988 or chat for support. You can also text HOME to 741741 to connect with a crisis text line counselor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org
