What do people misunderstand about your autistic child?

[Wajeehakamran]

I’ve been thinking about how much of autism can be completely invisible to other people. A child might seem fine at school or in public, then come home and completely fall apart because they’ve been holding everything together all day.
Things like sensory overload, masking, anxiety or needing lots of recovery time aren’t always obvious to people who don’t know the child well.
For parents of autistic children, what do you wish other people understood better? Is there something your child struggles with that others tend to overlook?

One child can't mask so hes understood well.
My other child I wish people wouldn't assume he doesn't struggle because hes intelligent. The school were shocked when they learnt about his meltdowns ans shutdowns after school and school refusal in the mornings "but hes so intelligent," "AND?"

Yep my child is “intelligent”. Some teachers understand and can see his traits, others do not. Which is why we pushed the ND profiling tool, the SENCO has put wheels in motion for him to be assessed. Because he isn’t disruptive and conforms, he goes under the radar. I worry when he goes to secondary he will get eaten alive. He thrives on clear expectations and boundaries, the school he would go to has a lot of behaviour problems which is concerning.

The autistic children have sensory sensitivities and that triggers them but they are not respected of in the children making them more vulnerable in the environment.

That autistic children don’t necessarily get better or easier when they are older (sick of being told that)

Just how difficult demands can be for them to cope with. A simple question may make them instantly clam up because answering is just too much pressure.

That the problem is them not being able to do things, not a lack of wanting to do them. I've been told that the problem is my child not wanting to do something, when actually it can take a year or more for them to try something they do want to do, because wanting it is a source of internal pressure/demand.

How challenging eating can be for some children. We used to arrive at social events involving meals partway through dessert, and DC would eat only a choc ice that we'd taken with us. They were literally unable to eat anything else in company. We had comments from others about how greedy they were because they only came for dessert. The commenter didn't see the several hours a day and multiple failed meal attempts.

People also don't get that there aren't any quick fixes. "Can't you just...?" is a common question. No, we can't is the inevitable answer - we'll have tried it years ago and it would have made things worse, which is why we don't do it now.

"Autism isn't a big deal, everyone's getting diagnosed with it or ADHD, and they just got on with stuff, so I don't see why A needs to go to a special school!"
This was about my friend's child.

that just becuase they can do it one day, it doesn't meant they can manage it the next.

refusing their favourite thing you offered isn't being stubborn, it's anxiety and probably demand avoidance

People assume that because my son is autistic that he must be ‘badly behaved’, and that is SEN parents a diagnosis because we can use it to excuse poor behaviour 🙄.
My son’s behaviour is a million times better than many NT kids. His internal distress leads to massive meltdowns, but he saves that for home. He would never hurt anyone, he internalises it and hurts himself instead.

Social behaviour. Just cause someone looks okay on the outside, it says nothing of the many layers below the surface.

That they have struggles because of how they’ve been parented. Like we as parents have allowed them to struggle socially and that we’re endorsing and cementing issues by responding to their needs.

An important perspective on the often-overlooked challenges autistic children may experience. Recognising the impact of masking, sensory overload and emotional exhaustion is essential to fostering greater understanding, providing appropriate support and creating more inclusive environments.

That she is very clever yet still in nappies at 7

That it doesn’t get any easier as they get older - puberty and teenage years have been hard.