There is a question many parents of autistic children carry quietly: am I allowed to say this is hard?
Not because things are always hard. Many families describe days that are funny, surprising, and deeply moving. Moments that stop them in their tracks. A child who notices something nobody else noticed, or who loves something with a completeness that is genuinely infectious. That is real, and it matters.
But so is the other stuff. The appointments. The school emails. The watching your child come home hollowed out by a day that cost them more than it should have.
Here is the thing: joy and difficulty are not on opposite ends of a scale. They coexist. And one of the quieter struggles of parenting a neurodivergent child is the pressure to pick a side. To either perform gratitude and highlight only the wonder, or to be honest about the weight of it and risk being seen as someone who resents their own child.
You do not have to pick a side. Both things can be true at once. And in our experience, naming the hard parts honestly is not what makes parenting feel heavy. Carrying them alone is.
Why so much SEND conversation focuses on difficulty
If you spend time in SEND spaces, online or in person, you will notice that a lot of the conversation is practical and problem-focused. Referrals, assessments, school placements, tribunal processes. It can feel relentlessly heavy.
That is not because the people in those spaces are defined by struggle, or because their children are. It is because those are the moments when families most need information, solidarity, and somewhere to turn. The harder the situation, the more urgently people reach out.
This creates a kind of selection effect. The conversations that surface publicly tend to be the ones attached to need. The quieter, warmer moments, the joke your child made that floored you, the unexpected friendship, the thing they are extraordinarily good at, those tend to stay private. Not because families are ashamed of them, but because they do not usually come with a question attached.
The result can be a public picture of neurodivergent family life that looks bleaker than the full reality. And that matters, because it shapes what parents expect, what professionals assume, and what autistic children absorb about their own futures.
We want to be clear: the difficulties are real, and they deserve honest attention. But the full picture includes a great deal more than difficulty. Both things are true, and both deserve space.
When school is the main source of pressure
For many autistic children, the place where the mismatch between their needs and their environment is felt most sharply is school. This is not a comment on any individual child’s capacity. It is a structural reality.
Research from charities working in this space suggests that a significant proportion of autistic young people experience anxiety, and that school absence among autistic children has risen sharply in recent years. For some families, by the time a child gets home each afternoon, there is very little left. The energy required to navigate a busy, loud, socially complex environment, often without enough support, can be exhausting in ways that are hard to explain to someone who has not seen it.
For families in this situation, the contrast with parents whose children are coping well at school can feel isolating. It may feel as though the problem is something they have done, or not done. It is usually not. The gap that causes difficulty is not inside the child. It tends to be between what the child needs and what the environment currently offers.
If your family is in this place right now, a useful starting point is to separate what is within your reach (adjustments at home, support requests to school, accessing an EHCP assessment if you haven’t already) from what is genuinely outside it. You cannot single-handedly redesign a system. What you can do is document, advocate, and ask for help. Protect your energy by focusing on the levers you can actually pull.
Honesty is not the same as hopelessness
One concern we hear from parents is this: if we talk openly about the difficult parts, will our children absorb the message that their life is hard? Will naming the struggle become a self-fulfilling story?
This is a thoughtful question, and it deserves a thoughtful answer.
There is a difference between telling a child that their life is hard and telling a child that what they are finding hard is real. The first can feel like a verdict. The second can feel like relief.
Many autistic adults reflect that what made difficult periods harder was not the difficulty itself, but the sense that no one around them acknowledged it. When a child is struggling and the adults in their life respond with relentless positivity, it can produce a very specific kind of loneliness: the feeling of being told they are fine when they know they are not.
Being honest, in an age-appropriate way, about the fact that some things are harder than they should be, and that this is not the child’s fault, can be grounding rather than frightening. It tells a child: you are not imagining this. You are not failing at being happy. And this is not forever.
Hope and honesty are not opposites either. The most grounding thing we can offer a child who is finding things hard is the truthful message that circumstances change, and that adulthood often brings more control over environment and routine, which for many neurodivergent people makes an enormous difference.
Making room for joy without performing it
None of this means the joy should be minimised or treated as a footnote.
The funny moments, the interests pursued with extraordinary intensity, the observations that catch you off guard, the relationships that form slowly and then deeply: these are not incidental to raising an autistic child. They are central to it. And for many families, they are among the most memorable parts of parenthood.
What we are arguing for is not a grimmer picture of neurodivergent family life. We are arguing for a more complete one.
If your experience is largely positive right now, that is genuinely worth naming. It helps to counter a narrative that can feel totalising. And if your experience is currently hard, that is worth naming too, without guilt, without the sense that saying so reflects poorly on your child or on you.
You are not required to curate your experience into something more palatable. You are also not required to anchor your identity as a parent entirely in difficulty. The full range is allowed.
Start here, if this resonates: the next time someone asks how things are going, try answering honestly. Not with a performance of gratitude, not with a catalogue of problems, just with what is actually true today. That is enough.
Read Jessie’s full SEND for Help column in The Times: link coming on publication day, at The Times.
