When it Seems that the World Fails Us as a Family

The phone rings at 11.20 on a Tuesday. It is the school. Nobody is hurt, everyone is very kind, and could you come and collect him. You are in a meeting. You leave the meeting.

Most working parents have had a version of that call. In families with an autistic child, it is often not a one-off. It is a pattern, and it sits on top of a dozen other patterns that never make it into the conversation about work, childcare or the cost of living.

I want to try to set out those pressures from every angle I can see, from the classroom and from the kitchen table. Not to make anyone feel worse, but because a pressure you can name is one you can start to design out.

The second job nobody applied for

Being the parent of an autistic child in Ireland comes with a second job: coordinator, advocate, form-filler, appeals officer and case manager. It has no hours, no pay and no training.

It starts with assessment. More than 23,000 children were overdue an Assessment of Need this summer, according to figures reported in August, against a legal time limit of six months. In April, 8,648 children were still waiting for first contact from a Children's Disability Network Team. Every one of those numbers is a family making phone calls in their lunch break, chasing reports, and deciding whether to pay privately.

Then there are the appointments, almost all of them during working hours. The meetings with the school. The forms for Domiciliary Care Allowance, school transport, July Provision, the appeal when one of them is refused. Each one is reasonable on its own. Together, they are a part-time job done in the gaps of a full-time one.

The working day, interrupted

School is supposed to be the part of the day when parents can work. For many autistic children, it is also the part of the day most likely to break down, because the environment was never designed with them in mind.

When it breaks down, the cost lands on the family. The collection calls. The suspension. The reduced timetable: more than 1,200 pupils were placed on shorter school days in 2023/24, and 821 of them had special educational needs. Department guidelines say a reduced day must be a last resort, agreed with parents, and as short as possible. But for a parent with a job, “just until eleven for a few weeks” can mean the end of that job.

Childcare is the next wall. After-school services and summer camps that can't, or won't, take a child who needs more support. Grandparents who would love to help but find meltdowns frightening. A primary school year of 183 days set against a working year of roughly 230, and a summer that has to be covered somehow.

The money

Families pay more and often earn less. AsIAm's Same Chance research has repeatedly found that most autistic people and families face extra costs because of autism, from private therapy and assessments to transport and specialist equipment, and that many parents cut their hours or leave work to cope.

There has been real movement here. Domiciliary Care Allowance rose to €380 a month in Budget 2026. From July 2026, the Carer's Allowance income disregard for carers who work rose to €1,000 a week for a single person and €2,000 for a couple, the largest increase ever, with a government commitment to phase out the means test. That matters. It means a parent no longer has to choose quite so starkly between caring and earning. But a payment cannot buy a therapy appointment that doesn't exist, or a school day that doesn't hold.

The child at the centre of it

It would be easy to write all of this as if the child were the problem. They aren't. The autistic child is often carrying more than anyone: holding it together in a loud, unpredictable school day, masking, then letting go at home where it is safe. Parents of autistic children know that hour after school well. It is not bad behaviour. It is the cost of the day, paid in the only place it can be.

Mornings are another flashpoint. A working family runs on a tight schedule; an autistic child often needs time, warning and sameness. When the family's timetable and the child's needs collide at 8.15 every morning, nobody is at fault. The design is.

Everyone else in the house

Siblings learn early to be flexible, to wait, to give way. Many become remarkably kind. Many also quietly go without: the outing that was cancelled, the parent who was on the phone to the school again. They need their own time and their own attention, not just praise for being good.

Couples often divide the load in ways that drift: one parent steps back from work, the other takes on more of it, and the gap in income, pension and identity widens quietly.

Single parents carry all of it alone, with no one to tag in when the school calls.

Autistic parents are more common than people assume, and many recognise themselves only after their child is diagnosed. For them, the meetings, phone calls and noise that the system demands can be exhausting in a very particular way, and their own needs at work are rarely asked about.

Grandparents and wider family are often the invisible childcare system. When they age, or don't understand, a family loses its safety net overnight.

The workplace

Employers are part of this whether they know it or not. A parent who is distracted, late, or using up every day of annual leave on appointments is not a less committed worker. They are a worker doing two jobs.

The law has started to catch up. Under the Work Life Balance Act 2023, parents and carers have the right to request flexible working, and an employer must consider it and give reasons if they refuse. There are also five days of unpaid leave a year for medical care of a child or relative. Those are floors, not ceilings. Good employers go further, and much of what helps costs almost nothing.

The people in school

I have spent enough time in staffrooms to know that teachers and SNAs are often under the same strain from the other side. The teacher who rings at 11.20 usually did not want to make that call. They are managing a full class in a room that was not designed for every child in it, with supports that arrived late or not at all. Families and schools are far more often on the same side than the system makes them feel.

What would actually help

If the stress is designed in, it can be designed out. A few places to start:

Employers

• Treat flexible working requests from carers as the default, not the exception, and say so in writing.

• Let people take leave in hours, not just days, for appointments.

• Ask, quietly and once, what would make work easier, and include autistic parents in that question.

Schools

• Agree a plan for a hard day before it happens, so a call home is the last step, not the first.

• Treat a reduced timetable as a short bridge with a written plan back to a full day, as the guidelines intend.

• Schedule meetings with working parents in mind, and offer online options.

Government and services

• Meet the legal time limits for Assessment of Need, and staff the disability teams that follow it.

• Keep going on the Carer's Allowance means test until it is gone.

• Fund after-school and summer provision that is genuinely inclusive, so childcare is not the thing that ends a parent's career.

Families

• You are allowed to say no to some things. Not every form is urgent, not every meeting needs both parents.

• Find your people: a parent group, a WhatsApp, one other family who gets it.

• Keep a small bit of something that is just yours. It is not selfish. It is how you last.

Change the environment, not the family

I usually end with “change the environment, not the child”. Today I'd widen it. Working families with autistic children are not failing to cope. They are coping, every day, with systems that were built for someone else: a school day, a working day, a services queue and a welfare system that each assume a family with spare time it does not have.

None of those systems is fixed. Every one of them was designed, and every one of them can be redesigned. The families are already doing their part.

Sources: Assessment of Need and disability team figures as reported by RTÉ and regional press, April–August 2026; Department of Education guidelines on reduced school days (2022) and reported figures for 2023/24; Budget 2026 changes to Domiciliary Care Allowance and the Carer's Allowance means test, gov.ie; Work Life Balance and Miscellaneous Provisions Act 2023; AsIAm Same Chance reports, asiam.ie. Check current entitlements with Citizens Information before applying.

Elaine Walsh is the founder of Autism & Me (autismandme.ie), a Waterford-based neuroinclusive education consultancy. She writes here on Universal Design, inclusion and Irish education, from the twin vantage points of the classroom and the kitchen table.