Family questioning my sons ASD

[TheyDontgetIt]

I’m so frustrated . We struggle so much and we are isolated and don’t see family much. I try to keep in contact with call texts photos and videos of dc. I’m always doing the chasing.

It now transpires that my attempts to keep in touch have sparked off debate as to whether ds really has autism and if he does it must be ‘mild’ because he looks and sounds ok in the photos and videos . They don’t see him !!!! I send a nice photo or a little video (20-30 seconds) trying to be friendly ans now it’s sparked off some kind of reassessment and criticising me as to whether I’m making it up ??

We have huge struggles on a daily basis and we don’t get much sleep. He’s still in nappies at 6 and I’ve explained all this but now I’m not being spoken to. Not sure if they are minimising so they don’t feel bad they never support me it if they genuinely think I’m making it up. So fed up. So pissed off. So frustrated. Don’t know where to go from here but I feel alone

Whites told you this? Have they themselves or has someone else told you.

either way have a conversation with them, ask them plainly what they have said and why they think that.

Who

Many times I’ve told them about his difficulties but they are saying that it doesn’t match what they see in pictures and videos. I’d cherry picked good bits to send ‘nice’ things. Maybe I should have sent videos of meltdowns? Pictures of yet another meal hes left or a chart of night wakings 😭

Db spoke to Dm about it who told me. My aunty directly said to me in a message that clearly his autism is extremely mild. It’s obvious there have been a lot of discussions about it.
I was trying to stay in touch with people and to send positive things and it’s just made everyone think I’m exaggerating

I'm autistic with two autistic children (all 3 of us diagnosed). We get this all the time.

For a long time I allowed the opinions of others to affect how I feel. But then one day I stopped caring. I have nothing to prove.

It's liberating when you let go of the opinions (that's exactly what this is, an opinion) of others.

its really hurt my feelings . I’m exhausted and just feel like rubbish now after what they’ve said . I feel like never talking to them again !

Aww that’s awful, don’t worry about what they think, they don’t know.
i would keep the tone light and send back a message next time saying lol, if only you knew.

However I would have a conversation about ds’s needs with your mum- unless you’re not close and then I wouldn’t worry.

do you have any support? In-laws? Friends?

They sound ignorant and offensive. If I cared, I’d have one conversation to ask them to stop talking rubbish. If they continued I wouldn’t bother with them ever again. You don’t see them much and they upset you, you’re not really losing anything.

I'm autistic. I get this all the time. My SIL said outright she doesn't believe I'm autistic because I'm too normal. I said she should have seen the meltdown I had the other week because DP re organised the cupboard without letting me know first. She still doesn't believe me. I think it's worse because her daughter is going through a diagnosis at the moment (she's 15) and won't take any of my advice because she thinks I'm lying.

My mum doesn't believe me either and I bet the wider family doesn't either. You just have to try not to let it bother you and probably not send them anymore videos for a while. It's your life, you know what happens in it, their opinions are irrelevant.

Oh op I've been there. My youngest dc is autistic. She's a young teen now but was diagnosed aged 8. Family and friends have no idea of how difficult things have been over the years because they've only seen snippets of her life. When she sees them she masks and is quiet/withdrawn till we get home. Then she has a meltdown. I'd never dream of sending them evidence of her meltdowns, so they will probably never witness one. The amount of times I've had family telling me she's just a "quirky kid" or that she seems to be ok when they see her. I've also had one flat out tell me they think I'm lying.
My dd has an ehcp, goes to an alternative provision school for children with a diagnosis of ASD with social and emotional problems. Pretty sure all the specialists (and there's been loads) who've assessed her along the way will of sussed if she was in fact neurotypical lol.

You cant win with ignorant people. It's best to just not give it any thought x

Excellent as his symptoms are so mild they won't mind looking after him for the weekend so you can have a break.

Lol love this x

Well looking at this objectively if I had a long distance relative who sent pictures of and videos of a child who appeared calm and happy and if I was completely ignorant about autism I would also think that the child loos great compared to the stereotypical images that autism conjures up.

Thats the problem here, their ignorance. Anyone with an ounce of common sense would understand that you have taken photos and videos during quieter times and that you would not be sending a video of any upsetting times which depicted your child in distress.

I would write a short message detailing the fact you have been kind enough to keep them all updated with the photos and videos of your child and have only sent them images of when your child is happy and content as it would be rather strange to send images of them when they are distress.

As they are incapable of grasping that fact and are gossiping and making incorrect assumptions you will no longer be sending them anything.

I’ve explained the difficulties though so they are all aware. They are just saying my description doesn’t reflect what they see in pictures and videos . I don’t take pictures of the bad things

I would reply with something along the lines of “what do you think autism is?” in a tone that makes it clear that you’re not going to argue with fools.

Sorry - I’m mouthing off because it’s touching a nerve. I’m truly sick of everyone knowing better, and always, always, always defaulting into the position that mum is somehow the problem.

I’m ds’ advocate, support, sounding board. When I slip up, or am brought to my knees he suffers because no one steps up for him. If I miss an appointment, I’m threatened with him being booted to the back of the queue. Not once has anyone wondered if I’m ok.

DS is a beautiful masker. My favourite time of day is the few minutes when I pick him up from school and he’s still in that mental space and I get to hear all the funny stories. And then he relaxes.

Once he came out of school with a broken finger, and he had blocked out the pain all day too. A few minutes with me and he started to feel it and turn grey. That’s how powerful masking is, and it takes such energy!

But he’s only “mildly autistic” apparently 🤯🤯🤯

Sorry OP that was meant to be solidarity, not another rant!

Sometimes I think we should be diagnosing people as neurotypicals and helping them by putting in supports for their lack of empathy, and tendency to act like jerks in the face of difference and diversity

Another observation, as after the children on all sides were diagnosed, followed by the adults - when people say that autistic children are so normal, what they don't realise is that their normal is from a perspective of autism.

Arrgh this makes me so upset and frustrated for you. My son has ASD which doesn’t ‘look’ like how people thing ASD ‘should look’. My son has a PDA profile which present very differently. He is 7. Still in nappies. No school. No bath/shower for 6 months. Its horrific. But when people see him for short bursts he appears pretty normal (wrong word I know). Our lives are awful I’m not kidding. We are at crisis point. But people don’t see this. It’s very hard to explain to people and I find I shut off and distance myself from people who ‘don’t get it’. But that’s hard when it’s your own family. Sending love xx

My husbands family do this. It annoys /upsets me a lot because I feel like my son being autistic is part of who he is and by them dismissing any struggles he has as my bad parenting they are denying who he is.
Ive stopped talking to them. We see them xmas and birthdaus/occasions only. Polite but distant is my motto now.

100%

OP no advice but just wanted to send a hug and say this is such a shit way for people to act (wonder how old we're talking here as my experience of the slightly older Daily Mail reading types - ashamed to include my parents in this - is very similar. "Oooh we never had this in our day", "it's just a tantrum nothing unusual ") and it makes me incredibly angry on behalf of families like yours struggling to get through the day.

If it was me I'd struggle to not start a conversation and address this head on. I don't think I'd give a shit if people were uncomfortable with that. These misconceptions need to be stopped.

But I'm a miserable angry old cow

All you mums on here absolutely frickin Rock.

And don't ever believe otherwise ❤️

Same here OP! In the end I just gave in and sent a redacted copy of her diagnostic report! Redacting the reasoning for diagnosis and just showing the actual diagnosis itself!
No I absolutely shouldn't have to - course not! But it shut them up!!!!!

*I redacted the reasoning for diagnosis so that they couldn't try arguing with the reasons etc