No One Told Me It Would Be This Hard.

Category: Children & Young People | Read time: 9 min read | Published: 2026-03-06

Fifty-four per cent of parents of neurodivergent children have been treated by a GP for depression, anxiety, or stress. Sixty-two per cent have given up work or reduced hours. These are not figures from a small campaign survey.

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A parent came to a session I ran recently. She had two children, both in assessment processes. She had reduced her hours at work to manage the appointments, the school meetings, the crises. She had not told her manager the full picture because she was not sure how it would be received.

She sat in the room and said, very quietly: I did not know other people were living this.

That sentence. That is the one that tells me why this work matters.

Because here is what the data actually shows about parents of neurodivergent children in the UK.

Fifty-four per cent have been treated by a GP for depression, anxiety, or stress. Twenty-eight per cent show probable clinical depression. Sixty-two per cent have given up work or reduced hours, losing an average of 21,174 pounds per year. Half have gone into debt in the last year to pay for basics. Forty-three per cent have gone without heating. Thirty-two per cent have gone without food. Forty per cent have experienced relationship breakdown since their child's diagnosis.

These are not figures from a small campaign survey. They are from large-scale research with thousands of families. They describe a population in crisis. A population that is, largely, invisible.

What makes it harder is that the systems supposed to help are often experienced as adversarial. Families describe fighting for every assessment, every plan, every piece of support. Local authorities spend over 200 million pounds a year defending tribunal appeals, and lose ninety-nine per cent of the cases that reach a full hearing. That is not a system making occasional errors. That is a system that routinely makes decisions it knows to be indefensible, and spends public money defending them.

The parent doing all of this is also, usually, trying to hold down a job, maintain a relationship, be present for other children, and function as a person. The load is not evenly distributed. Mothers and primary carers carry the information, the advocacy, the emotional labour, and the daily management. Fathers are less likely to be offered support and more likely to disengage quietly. That asymmetry damages relationships not because either person is wrong but because the system defaults to one parent and effectively excludes the other.

And then there are the questions nobody asks out loud. The ones that live at three in the morning.

Am I the problem? Is this my fault? Will they be OK? My child is in pain and I cannot fix it. The fighting is destroying me. My relationship is not surviving this. My other children are paying for this. I am scared of what my child might do to themselves. These are not dramatic fears. They are the ordinary night-time thoughts of parents who are carrying something enormous with very little support.

What actually helps is rarely what is offered.

Generic self-care advice does not help. You cannot meditate out of a broken system. Suggesting that a parent who has not slept properly in three years should try yoga is not a useful intervention.

What helps is being in a room, or a group, or a conversation, where you do not have to explain from the beginning. Where the reality of your experience is already understood. Where someone else says yes, that happened to us too, and here is what we did.

Peer support from other parents in the same situation is consistently identified as the highest-value form of support available to this population. Not because other parents have better advice than professionals. Because they do not require you to justify why this is hard. You are simply already understood.

This is what is missing. Not more leaflets. Not more waiting lists. Not more professionals who treat parents as problems to be managed alongside their children. Community. Mutual recognition. Honest information without false reassurance.

The parent who did not know other people were living this left that session with something she had not had before. Not a solution. Not a plan. The knowledge that she was not alone.

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Questions Leaders Often Ask

Is it normal to feel burnt out as a parent of a neurodivergent child?

Completely normal. Parenting a neurodivergent child often involves navigating complex systems, managing daily challenges that others do not face, and carrying emotional weight that is rarely acknowledged. Recognising burnout is the first step towards managing it.

Where can parents find support?

Connecting with other parents in similar situations can be transformative. Our parent workshops and community resources are designed to provide practical support and reduce the isolation that many families experience.