I would do anything to make my autistic daughter happy, but I feel like a walking mother failure

“TThere’s something wrong with me!” my seven-year-old daughter sobbed in 2018. “Honestly, it’s not,” I said and gave her a hug. “You’re just a little sensitive, a little anxious.” I wanted to be the reassuring parent, the mother who makes everything okay. But I had the opposite effect on her: I minimized her sadness, and it scared her and shook her trust in me. How could she get help if I didn’t accept there was a problem?

At the time, her father and I did not know our daughter was autistic. She certainly wasn’t the easiest to get along with, but she was also funny, smart, imaginative and popular at school. And although we were aware that she suffered from intrusive thoughts, separation and sensory issues, a bothersome phobia and difficulty controlling her emotions, her teachers, our GP, relatives and friends said we didn’t worry too much. had to worry. ‘She’s a character! She will be fine.”

We hoped that she would grow out of her weaknesses and difficulties, or that she would learn to cope with them in time, and that in the meantime we could provide a safe, loving environment that would keep her contained. I don’t think we understood the extent of the pressure she felt to conceal her difference of opinion and blend in, or the fear it caused her. There was so much we didn’t understand.

Every neurodivergent child is different from the others, and other parents I’ve spoken to have gone on their own journey of exploring their child’s needs. We have tried everything to help our daughter feel better: meditation, homeopathy, eye movement desensitization and reprocessing, hypnotherapy, emotional freedom techniques, primitive reflex therapy and a daily program of self-help exercises to overcome her vomit phobia – with varying degrees of success , usually none.

Frustrated with the waiting lists for Child and Adolescent Mental Health Services (Camhs), we forfeited treats and took out loans to have her privately assessed by a child psychiatrist, as well as family therapy and two years of individual psychotherapy. We felt an urgent need to learn more about the way her brain worked. Finally in 2021, when she was almost 10, she was diagnosed as autistic.

But now we started to dread weekends and holidays. Our daughter’s behavior was impeccable at school, but at home she would vent the frustration she was suppressing while trying to appear perfect, and that could be explosive.

My partner, who was a complementary therapist, never wanted to go down the drug route that some of our friends went with their neurodivergent children. He changed his mind when our daughter turned eleven. It became too hard to watch her grow in fear and inability to cope with life. Psychotherapy didn’t work, so maybe there was a drug that could reduce her anxiety and make it easier for her brain to concentrate?

When we were finally shown a team at Camhs, the implication was that we did not accept our daughter’s neurodivergence. “You can’t cure autism,” we were told. Since you can’t yell at people, we had to grit our teeth and say, “Is there anything you can give her to help her feel better, even just a little bit?” Because we have an 11-year-old who is at risk of committing suicide if she doesn’t get help.”

We know that being autistic is a challenge for her, but it shouldn’t make her life a complete misery, right? Many autistic children are happy, or at least not tortured, anxious or aggressive. It’s not the autism we’re trying to change, but the cluster of secondary mental health problems that seem to be a consequence of it in her case.

In the meantime we have learned not to make demands on her. We recommend going for a walk, going to the cinema or going to school, which she doesn’t want to go to for most of this year out of sheer fear, but we don’t insist on it. We try not to react when she scolds and swears at us. We don’t make a big deal about her harming herself (although all sharp things in our house are locked up). We try not to get angry (or at least show it) when she says she wants to kill herself, or us. We will call the emergency services if she becomes violent. It seems to snap her out of her anger when they arrive.

Things are slightly better than three months ago, when she suffered a dramatic breakdown, or autistic burnout, and was admitted to an NHS child psychiatric unit for an extensive assessment. That was a gloomy time. We hoped 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 gave her a very mild dose of antidepressants that might help. We see glimpses of an improvement.

Yet it often feels like we live in an alternate reality, where we cannot be a real version of ourselves with our own child. She calls me a damn bitch; I ask her if she would like a piece of toast. It’s exhausting 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 is happening? One theory is that her autism makes it difficult for her to identify her feelings, so that she cannot explain them no matter how she expresses them. Upsetting us is a way to make us feel as bad as she does, and then we will understand how awful it is to be in her brain, and how much she needs help.

I am so sad for my beautiful daughter, and for us. Even though we have had wonderful times over the years, on some level we all grieve for the life we ​​could have had without this torment of hers. And she has the added sadness of the happy childhood she thinks was lost to her.

I think my partner and I make a great team – practically and emotionally – and yet having an autistic child makes you question your parenting abilities. My daughter always says I’m a bad mother. The experts’ focus is on her father and me – how we respond to her behavior, how we interact with her – and sometimes they are a bit patronizing, or seem irritated when we question their approach. However, some are truly fantastic, and the knowledge they give you is transformative. The best therapist we’ve had so far grew up with an autistic sister. She lived it. We need more like her. She taught us non-violent resistance and low arousal techniques. We are now learning about attachment theory and acceptance and commitment therapy. Everything helps. A little.

We usually shake off difficulties with humor and a glass of wine. But sometimes I can’t help but feel like a walking mother failure. Fortunately, all I have to do is think about our daughter’s twin sister and the wonderful relationship I have with her – the fun we have together, the affection between us – to realize that I haven’t done too bad of a job. to raise a neurotypical child.

Two different parenting styles, one twin – of course neither thinks that’s fair. But if it saves our autistic daughter’s life, we’ll continue to pivot and juggle, and learn as much as we can, and push the experts to think harder. We haven’t lost sight of how sweet a person she is, and how creative and talented, beneath the layers of confusion and fear. We promised ourselves that we would never stop fighting for her happiness.

Caro Nightingale is a pseudonym.