Best way to deal with people who do not "believe" in Autism?

[BigWeeHag]

Or specifically, Autism as it relates to their relative?

Having massive problems with my relatives - one believes it is poor parenting, casts this up at me at every opportunity and takes it upon themselves to replace the "firmness" that they believe I do not have - which essentially means bitching at the poor child who doesn't know what he's done.

Particularly horrible small incident yesterday - DS1 was already wound up for some reason, relative decides that he has to say please, for his own drink that he had already had but that had been moved away from him by relative. Wouldn't let him have it.

Ended up with screaming meltdown and no sleep until 1am.

The stupid thing is, I am very firm and strict, in comparison to my friends at least, DS1 is not allowed to get away with inappropriate behaviour, but there are some behaviours that aren't "naughty," they are just him, don't hurt anyone, just aren't normal so relatives seem to think he has to be "disciplined" out of them.

I am on the verge of telling them both to fuck off, but I don't want to do that. Both of them work in special needs, and both are extremely good at their jobs and would never treat any other child in this way.

I know they have to do the whole coming to terms with DX thing, but at the moment they are completely denying it and saying the paed, SALT, OT, other Paed, Physio and SW don't know what they are talking about and there is nothing "wrong" with him.

ARGH. Sorry for rant, I'm sure you've all been here. ex-PIL are coming over next week and I know they will all be ganging up on him!

I get that sometimes...I get 'well you'll have to just include him with family stuff' or 'he can't have autism he can speak'

I don't know what to suggest other then try not to let it get to you, or tell them you are his mum, you are taking advice from PROFESSIONALS and would be grateful if they would try to support you in this

Yeah, I have the t-shirt I'm afraid

To be honest, I think there comes a point when you have to think: "Stuff it, I'm on a hiding to nothing here".
It has taken 2 years for PIL to begin to accept dd1's dx - I went to hell and back in the beginning. They thought I was over-anxious/too strict/not strict enough etc.

DD would be stimming (running in circles, hand flapping and talking to herself) and they would say things like, "We all talk to ourselves, that's not unusual"

I think it's totally normal to want and need people close to us to accept and support the dx, but I don't think it always happens.
In other cases, I would have suggested giving them some literature to read, but then I read that they work in SN field. That must really be hard for you to accept!

In our case, I simply stopped telling certain family members what was going on -I always felt like I had to justify myself to them.
Do you feel that you could tell them how hard they are making things for you?

In general you can't really not beleive in autism, even if you pretend that's the case, as it's really just a name for a collection of symptoms that we all know happen- speech delays, social issues etc.

However when it's applied to individuals seems fairly common; I am sure my sister thinks we are making it up about ds1 despite his DX / sattement / DLA / application in process for SNU....

She's in childcare too. Mind she thinks she knows everything- keeps trying to tell em about teh system and how it works, and denies stuff I say (she's doing degree in early eyars, I am doing MA in ASD; she thinks she can tell me what ASD is and what's out there WRT it).

My advice? Just like I don't claim to know anything about how engines work, they don't know about ASD. But whree I get what I don't know they have yet to relaise that. Sod them.

I think close family are the hardest because their own love, hopes and fears for their beloved grandchild/neice/cousin cloud their sense!
I wonder if writting a how to help me 'passport would help? although I confess not to having done this for family ( only other carers/cubs)but perhaps you could write it for 'school/nursery' and show it to the relatives to see if you have 'check it is clear'or leave it lieing around. The subjecty to cover might be how to help me understand the world, how to help me when I am getting upset.

My mum didn't think there was anything wrong with the dd's until i took her on the early bird course with me, then she could see why the dd's were doing what they were doing.

A lot of friends and family seem to blank me when i try to explain ASD, if they don't want to listen then thats their problem.

If they think its down to parenting then i would let them look after the child for the day and see how they cope with the meltdowns .

My doctor is just as bad, he thinks my dd1 does not have Aspergers (he doesn't have to live with her) even though she has a dx.

Agree with tribunalgoer at 9.27.can you do this? You have to somehow look them in the eye and remind them that they may be experts on special needs but you are the expert on this child and he is under your care, not theirs.

I appreciate how hard this must be. I had an OT last month telling me that DS2's fear of hand-dryers was "a behavioural issue" that "needed to be nipped in the bud". As if that helped.

On the positive side, your son will grow up knowing that you at least understand him ......

If you want to reach out to them, perhaps you could describe the process you are going through with him - reassure them somehow that you are building up towards him having good manners, but help them see that you need to get the foundations right first.

So difficult when your team isn't playing well. But you are team coach and if they aren't playing by your rules, they may have to be sacked!

Doesn't matter what they think about the autism thing. They can think what they like if they just start following your rules.

Thanks guys.

Just had a semi-apology with conditions from one of them - saying that he thinks DS1 gets away with too much rolly rolly eyes but that he didn't mean to cause such a big problem yesterday. So that's OK then.

TBH I almost preferred when my PIL thought that DS was just being naughty. The tut-tutting did not bother me at all, but the depressed faces/pitiful enquiries 'How is he then'/general doom and gloom are a real PITA. I may be in denial myself, but I don't see DS's condition as this big tragedy that has befallen us and ruined our lives.
To quote Riven (if I may): he walks, he talks, one day he may yet wipe his own bum...

glad you got a semi-apology.

Remember, you're Fabio, they're rooney and the other strikers. Doesn't matter how brilliantly well they've done for their clubs. You're the manager and now they've got to play in your team. Otherwise, like Fabio, you might wonder whether you'd get a better result from bringing in inexperienced youngsters.....

Well, thing is when team loses, Fabio is sent packing, not Rooney & Co. Which actually makes it a good analogy: if you win, it's the players who are good. If you lose, it's obviously your fault

Used to have a different name but didn't post on SN then and naively outed myself on another thread. But only had original name for about 3 months, lol.

Glad you got a semi sorry..

But yuk at having to deal with this as well.. It just makes things so much harder on top of life as it is.

My dad is like this.. I get around it by not mentioning the 'A' word.. But just explain some of the different issues and what we are doing. For instants.. Dad asked me why I was back at the GP again for ds2.. So intead of saying about his mental health and school issues etc.. I told him how in a quiet stable environment ds2 copes well and does fab academically, but he does badly with the hustle bustle of the class... And seeing as new teaching ( new to dad) ways mean hustle bustle, we ds2 needs quiet and they have to put that in for him.. And yes he would do aot better in the old system.. Not quite true but it got dad on our side.

Ex however just states to me and ds2 and school, thatthere is nothing wrong with him and everyone has said to him that mummy is a nutter!
But ds2 knows different, we know different and the problems that ex has when ds2 is down there are ignored by the adults or handled by yelling at him..
but ds1 cares for ds2 when they are down there.

I've had it from my family too. Ds1 isn't Autistic because "he's a delightful boy!" - and this from an experienced teacher.

I responded by saying "Yes, he is delightful, isn't he - but the NHS is extremely difficult to get money out of, as you know, so they really wouldn't have wasted their time with a child unless they had good reason to believe that something needed looking at. His teachers, his speech therapist, his doctor, his playschool key worker, and ALL the staff at the assessment centre ALL agree that he has Autism and ADHD, and really, who the Hell am I to argue with all those people? What is possibly in it for them to lie? It would be cheaper and easier to have him expelled and blame me, so the fact that they haven't done that shows that it's true, yes?"

And he didn't really listen then. So i stopped the conversation and started talking about my rather neglected ds2 and how funny, clever and beautiful he is.