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Do any other parents of autistic children with higher support needs feel isolated?

7 replies

Sunsettigger · 30/09/2026 18:45

Does anyone else ever feel a bit hurt when parents of children with lower support needs talk as though we’re all experiencing the same thing?
I completely understand that every autistic child has their own struggles, and I’m not saying for one second that those struggles aren’t hard. I would never want to take away from another parent’s experience.But sometimes I find it really difficult when people make comparisons as though our lives are basically the same, when there can actually be such a massive difference in daytoday life depending on where your child is on the spectrum.My child is non-verbal, attends a special needs school, isn’t toilet trained, needs help with pretty much everything and has never slept independently or slept through the night. There are things that other families might be dealing with that are completely different their child being able to talk, feed themselves, use the toilet, sleep independently, attend mainstream school and manage with minimal additional support.I know those children still have needs. I know their parents still have very hard days. I’m genuinely not trying to say otherwise.I just sometimes feel like there’s an expectation that because we both have an autistic child, our experiences must be the same, and they really aren’t.There is a huge difference between needing some additional support and needing a child to have support with almost every aspect of their daily life. And sometimes I just wish there was more acknowledgement of that without it becoming a competition about whose child has it harder.I’m not looking for anyone to tell me my child’s needs are more important than someone else’s. I just wonder if any other parents of children with very high support needs understand what I mean when I say it can feel incredibly isolating when people act like we’re all living the same reality.

OP posts:
johnd2 · 30/09/2026 19:27

If you've met one autistic person/child, you've met one autistic person. It sounds like a lot of people don't realise that in your experience.
It's hard to really compare anything, even the same child would have a different effect on different parents.

It sounds like you're a great parent trying to do the best for your child, despite everything. Hope you can see some light at the end of the tunnel.

In our case we are a heavily autistic family, but you wouldn't necessarily notice from the outside. But I'm fully aware that things can be a lot harder for some families.

whippersnapper55 · 30/09/2026 23:05

I understand how you feel. My adult son is profoundly autistic and learning disabled - I grind my teeth at all the 'autism is a superpower' bollocks!

Have you met any mums from your son's school? When my son was at special school, we had a mum's group and had nights out and coffee meet ups. They were a supportive bunch and because all our children were similar, we could talk about the difficulties and swap tips for tackling problems. Maybe you could speak to your child's school and see if you could set up a parent's group?

LateNightOne · 30/09/2026 23:07

It's not a competion. I often think that meeting other mums with an autistic child.

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WaitingForMojo · 30/09/2026 23:27

It isn’t a competition. You don’t have to minimise the needs of others in order to validate your own.

Plenty of ‘high functioning’ autistic children can’t attend school, have violent meltdowns, and have needed round the clock care. They may be verbal but their needs can be intense.

That doesn’t take away from the needs of your child. But it can be incredibly isolating all round.

Besidemyselfwithworry · 30/09/2026 23:31

I have afew friend with autistic kids and they are at different levels of severity but it’s fair to say that they all have their own challenges. From the outside maybe some would consider certain children to be more challenging than others but for parents in the thick of it; it’s their own challenge and their experience I guess.
I think the poster who suggested about a mums support group has a brilliant idea - buddy up and support each other and help to navigate this. My kids aren’t autistic but I try to support friends who’s kids are and sometimes a chat and a coffee is just what they need.

Objectrelations · 30/09/2026 23:58

Yeah, there’s been a few threads recently on the lack of differentiation in Autism diagnosis categorisation. It now encompasses such a ridiculously wide range of degree of problems in functioning and capacity, it has rendered it almost completely meaningless.

Ponderingwindow · Yesterday 00:17

I truly wish they had not forced teamed everyone. Our advocacy needs do not overlap.

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