Grandparents don't agree with diagnosis

[Mum1405]

Hi

My son got diagnosed last year at the age of 3 with Autism. He had been on early support since he was 18 months old due to his behaviour etc. Recently his speech has been really improving and having not seen grandparents during lockdown and now seeing them they were surprised at how much they thought he had come on. They have always been a bit unsure about his diagnosis of Autism but today they said they think there is nothing wrong with him. I really struggle with this because I can see he is very different from other children his age. He got an EHCP finalised just before lockdown but didn't quite get enough funding for a full time 1:1 which school have just sent off more information to show why he does need a full time 1:1 when he starts school in September. I just don't understand how they can think he is a NT child after being diagnosed and needing all this extra support. Has anyone else experienced this?

Many thanks

Yes I have similar. I think they don't understand our children will still develop over time so when they see progress they think it's a cure. They are probably also in denial.
The ECHP will be the best thing that ever happens for him.

Yes, what the previous poster said, children with autism also learn, develop and progress in their own way, like any other child does. Autism is not a speech condition, having excellent speech does not mean that autism is not there.

It's very common for some partners, family and friends to not want to understand that your child has autism.

They will do everything they can to persuade you there's nothing "wrong" with your child and if you try to point anything out they will minimise it.

Please understand it's almost impossible to alter their views, it's best if you don't discuss anything with them about your son's autism and you just ignore their comments.

Ignore all negative comments from everyone who is not qualified to diagnose autism, even if you think they should know about it like some teachers and medics, their opinion is not very often an informed one.

Do what you know is best for your child

Thank you everyone.

Same here. I think it's partly because they want to reassure you and partly because they don't come into contact with as many children of your child's age so the differences aren't as apparent. The worst is when they say we should be firmer with DS and he won't play up, not realising his sensory needs or that being too stern just turns it into a game for DS. They've got more clued up over time and we tend not to talk about it much now!

LottieBalloo I know what you mean about being stern we have the same problem. My son is very sensory. The more I tell him not to do something the more he does it and he has no awareness of danger. It's very difficult as his older sister does not understand why he seems to get away with everything. We are currently toilet training which is awful he will wee on the toilet if I take him and he is willing to go (everything has to be on his terms) but if not he just wees everywhere he has never once let me know that he needs to go to the toilet. How old is your ds? Have you found their behaviour has improved as they have got older?

Yes he is almost 5 and we are getting there but every day we do kinetic sand play or playdo or something like that to help him with his sensory needs then i find he is less fractious. What really helped us is how we frame what we say. Eg DS is about to spit crumbs everywhere, we say please eat that nicely then you can get a star on your chart, not don't do that. If he's picking the label off something, we say lets keep that nice, not don't as that will just turn it into a game. School have worked hard with helping him to read facial expressions as that is a lot of the problem, they have Thomas the tank engine cards with different expressions and DS has to guess what the expression means. This has really helped. DS was a nightmare to toilet train, went through smearing phase, and still has accidents mostly at school but also currently at home every now and then. I just always say oh dear next time try to get it all in the toilet, then you can get a star (I would never take away a stat for an accident). Sometimes heroes it on purpose but I pretend it's an accident to take the power out of it and show DS it has no effect. If he gets a full star chart he gets a present on a Saturday. In reality, I engineer it so he always gets a present, but I do cross stairs off as a visual thing for being very naughty (hitting etc). We also do two yellow card warnings and a red card system for when he's in a big mood!

It is really difficult when you encounter this. I agree you won't change minds, they need to do this for themselves and it may never happen.

I too hate the "behaviour" label. I find it sad that someone cannot take a moment to just stop and think and be kind before commenting. I often find myself giving an explanation to behaviour, especially as they get older and behaviours stand out more and are less accepted than from a younger child.

@LottieBalloo some wonderful strategies you have listed.

They don’t accept it?! They don’t respect your opinion as his other nor a professional objective option?

On that basis of the above, I would reduce my Interaction and my son’s interaction with them.

Why? Because they are not accepting who he is.

Similar here. They know better of course. I'm afraid it has really affected our relationship with my parents. We minimise contact now and have stopped using them for childcare.