The challenges of parenting will change (Picture: Ella Byworth for Metro.co.uk)

Sometimes, parenting is about being in the moment. Other times, it’s all about planning ahead.

But when you have a child with autism, you tend to take it one day at a time.

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There’s no such thing as the long haul when it takes every ounce of energy simply to make it through to bedtime without losing the will to live.

Still: people change, and people with autism are no exception to this. The toddler who has a meltdown in every supermarket becomes the child you need to get into secondary school and then becomes the young lady who needs to get a job.




All of a sudden you realise that the problems you had to solve back when they were three or four are no longer relevant, and that instead you have a heap of new ones.

But just how much do things change? And how do you deal with it?

To find out, I spoke to a number of parents of children with autism about the issues they faced – and also to Tom Purser, Head of Campaigns at the National Autistic Society.

Here’s what they had to say.

Catching up

In some ways, some of the changes aren’t so different to those faced by many other parents – although the timing is a little bit off.

Some of the practical problems solve themselves – or you simply learn to deal with them. Supermarket meltdowns can be avoided with a little forward planning and logistical consideration, and over time, your child learns to handle himself.

‘Because autistic people do keep learning and developing,’ Tom explained, ‘those issues are going to come at some point, and that applies right across the life span.’

But learning something as simple as toileting has repercussions when it happens at a different time to all the other children in your child’s class. You spend all your time playing catch-up, which is harder to handle the more obvious it becomes to the child.

Karina, who has a child on the spectrum, agrees. ‘My nine-year-old son’s friends have a lot of freedom – for example, walking to school, or going to the park and shops by themselves.

‘We now let him walk to school by himself as it is a short walk, but he’s only recently been ready to do this. Showing him we trust him to do it has really helped his self-esteem.’

It turns out that confidence is a general issue – one that tends to come up as your child becomes increasingly aware of their emotions, but doesn’t know how to process them.

‘I think the biggest challenge we face today is helping our daughter with her self-esteem,’ according to Chloe, another parent experiencing similar difficulties. ‘Children can be cruel and she has faced bullying throughout her school life.

‘Social communication is still a huge challenge for her. She has become painfully aware that she is different from her peers and has become socially isolated. She prefers to interact with a small group of friends online and so we have to be vigilant in order to make sure she is safe.’



The sense of letting go can be a problem for many parents – but it’s even harder when you have a child with autism, given that their needs are often greater.

‘When your child’s at school,’ Tom explained, ‘they have a smaller number of teachers and staff that come into contact with them, and it should be more straightforward to ensure that your child’s getting the right education and that people are supporting them.

‘That’s not always the reality, but there is a more controlled environment.

‘Once you send your child out into the world, you’re trusting everyone else with them, and there’s much less control. So you want your child to live a more independent life, but the concerns about loss of control become greater.’

(Picture: Ella Byworth for Metro.co.uk)

Brothers at arms

According to Karina, ‘The biggest challenge was getting the family to understand my son’s behaviour. It has taken about six years but I now feel they understand him more.

‘Our family has finally accepted that he is not being ‘naughty’ and behaves the way he does because of his anxiety and sensory issues.’

Other problems arise from the growing awareness of siblings. It’s one thing when you realise your brother or sister is different, but it’s another when you get teased about it.

Lucinda, mother of Michael and Paul, told Metro.co.uk: ‘This year my second son moved up to secondary, and for the first time has been talking about how he hates having a brother with ASD.


‘Michael gets teased about his elder brother’s behaviour. He is very sensitive and has really struggled – it has impacted their relationship at home as Michael is now telling his brother to stop doing stuff, and can be really unkind.

‘He loves the school (which has been amazing) but really struggles to find his own identity. I know teachers often pick up on siblings but it is tough when the whole school does.’

But what about parents? Do they change too? Or is it simply a question of adapting?

‘I have changed a lot as a person,’ according to Karina. ‘I gave up the profession that I loved so that I had more time and energy for my son, which has helped the whole family. I used to be very career driven but I am now family driven.’

Tom said: ‘The world shrinks quite a lot, because parents stop going out, or trying new things, or going to new places.

‘There comes a time where that doesn’t necessarily hold any longer – the parents have to shift their position a bit.’

Moving out?

A more serious issue arises when your child grows up – and there are concerns about the levels of support available to adults, given that only 16% of autistic adults are in full-time paid employment.

‘There’s a need for more time to mature and develop,’ Tom explained.

‘The Educational Health and Care Plan (which replaces the Statement of Special Educational Needs) covers up to the age of 25 – a recognition that autistic children don’t just reach 18 and are suddenly fully-fledged adults.’


But there are other concerns too. What happens, for example, when children with autism become adults with autism, dependent on parents who may find it increasingly difficult to support them?

Tom added: ‘What we hear as parents get older is a concern about what’s going to happen when they’re no longer around – who’s going to look after their adult child who might not have achieved full independence.

‘Sometimes independence is achieved later in life, so it can still happen – but you do have other situations where the autistic adult might be living with their parents for most of their lives.’

While the picture we’ve painted may seem rather bleak, there is hope – provided people are willing to listen, and understand, and adapt.

Tom said: ‘When the support is right, the children can thrive, and that’s an opportunity that leads to new challenges.

‘The common thread is just to have a world that’s more understanding, that knows what autism is, understands how a person might behave or what they might struggle with, and can just be kind and empathetic, and accepting.’

Some names have been changed.

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