To lose friends & family re autistic child

[MumBlingAgain]

This may end up being long so please bear with me.
One of my daughters is autistic. Spoke "on time" and fluently but early on we noticed behaviours which pushed us to seek a diagnosis.
It was new and worrying for me so I confided in a couple of friends and family members. Reactions varied from:

• my sibling: "everyone has a different personality, nothing is "wrong" with your child, she just has such and such personality traits" (Note: I never said something was wrong with my child, just that she was autistic!)
• my closest cousin: "your child is not autistic, that's such an overused label these days, your child is fine, they are sociable and smart" (Note: the diagnosis was carried out by qualified medical professionals).
• another friend treating it as if it was a cancer diagnosis (At least she didn't try to tell me what my daughter is and is not!) a couple of other friends have just asked a question or two then gone very quiet and I get the feeling they think I'm crazy.
• my parents initially suggested I should see a psychologist for being "so anxious" and that my parenting was to blame for my child's emotions. My mother was adamant my child was smart, capable and "normal" (I hate that word so much by now!) until she spent the day with some distant cousins who have a neurotypical daughter the same age. She called me the same week urging me to seek help for my daughter and has been educating herself ever since and of course "accepted" the diagnosis when it came. Which of course is commendable (the educating herself bit) but I still feel bitter about how it came about.
• I should also mention that I have a couple of wonderful mum friends who have just listened and continue to treat my child in exactly the same way since I shared with them, which has taught me to be choosy about who I share with

Now my mother wants to tell everyone about the diagnosis and I have asked her not to. She is claiming I am not helping my child by being "secretive" and is suggesting I am "making my daughter's autism a problem when I should be celebrating her differences".

Great sentiment. 😂, but the reactions so far make me feel like I can't trust my family to behave appropriately in front of my child. She is still young (only 5) and unequipped to deal with prejudice. I don't want an inconsiderate adult mouthing off in front of her with "oh, don't cry Freddy, your cousin hit you because she doesn't understand your feelings / doesn't know better".
Even worse if children from the family overhear ignorant statements and repeat them.

So I guess my post is to ask: WIBU to reduce contact with my otherwise lovely family because I feel so bitter about their reactions (either denial or as if it's some problem with my daughter's personality!) and I want to protect my child from their ignorance?
My family are usually lovely and they probably think they are the best and most supportive but I just feel so sad about their reaction.

Ok, if you think IABU, please talk me down from this hill. I want things to get better but I'm struggling with trust at the moment.

It's an adjustment for everyone. You're doing so well. Give them a chance to catch up with you. Don't accept any nonsense though.

I don’t think you are being unreasonable at all but it does pass. We encountered similar comments and similar reactions but my son is Level 2 autistic. There was no doubt as time moved on that he was autistic and then some of my own family members ended up with diagnosis themselves so there is that 🙄🙄 they were probably just in denial.

I think people are just adjusting. I wouldn’t reduce contact.

I think you are right not to share the diagnosis widely. If needed I would suggest you share the individual difficulties- eg dd doesnt like crowds, dd might lash out if overwhelmed. Thats often more useful than saying “autistic”, as its a wide spectrum.

I would also try and cut your family some slack, as its a grief reaction from them - they dont want it to be true. They will adjust in time.

I feel for you. My daughter is very verbal but her autism effects her hugely- my inlaws told us there is no such thing as autism, we are just bad parents.

They do probably see your child struggles but it's easy to blind to the things you don't want to accept.

Solidarity OP. I’m sure my dad, brother and their partners are completely oblivious to how hurtful their comments are about my ND DD. Don’t see the point in diagnosis but equally clueless to how difficult everyday things can be

I'll try and share examples of why I worry about this. One of my daughter's early behaviours that we linked to autism was that she is not good with boundaries and can be very touchy, and also self harm, though we are working on teaching her not to.
My sister has a child that my daughter always tried to hug, pinch etc and I understand that was frustrating for my sister but she basically went around telling other family members that my daughter was jealous and so different from her "sweet and kind" older sister. When I tried to explain this was linked to autism my sister basically refused to believe my daughter is autistic and claimed she is way too sociable to be autistic because she always wants to hug other kids.
Or when she has meltdowns at busy family events for example people rolling their eyes and commenting about how I should set firm boundaries and so on. One once made a joke in a language that my child can't understand during a meltdown saying: "Are all the girls in our family divas except for X" (my daughter is one of the only girls other than X...
it's that kind of stuff when in fact my daughter can't deal with the sensory overload and gets overwhelmed more easily than other children her age

I have Autistic dc.

The reality is people, friends and family don't understand.

It's why parents of children with additional needs end up isolated.

My family still don't understand, 15 years later. We rarely see them now as it's just too difficult.

I' estranged from my birth family - and everyone I knew growing up, although they still talk about me 🙄

Everything for a reason. I got to come to terms with and deal with dd's autism diagnosis all alone - and I'm so so glad of it.

People getting involved and trying to sway you is a fucking nightmare. I can only imagine the stress they would've added.

Yanbu to say you need some time to deal with this situation alone and ask that if your family remotely care about you, please keep it quiet for now

I can proudly speak about my daughters autism now, and can cope with the reactions of strangers - but at the beginning of the journey its a lot to deal with xx

i think I’d let the family know via factual text and send them a link to the national autistic society so they can read up and understand. Education is key and I guess, judging from their initial responses that they have little knowledge in this area.

Welcome to life with a disabled child. Yes, we all had reactions like this. Wait ‘til family members start to question other family members’ ASD possibility yet cannot see their own!

My Dad thinks his Dad and my brother are autistic; he’s probably right. But….not him! It clearly skipped his generation! 🙄

Sorry this happened to you. I hope you've found happiness as a nuclear family- maybe things will change one day?
to be honest this is a potential future I worry about because I have never fallen out with my family before but this has been building up over the last few months

I can't pretend to understand. But having an autistic colleague with no friends throughout secondary school, I'd probably try to keep as many people as possible around, as a cousin might be a friend at some point. You might need the hide of a camel though to cope with them.

We've never fallen out.

They just don't understand the dc behaviour, schools, how they communicate etc.

As 3 of my 4 dc are Autistic, I wouldn't describe us as happy, more functional.

It was a gradual thing, not a particular issue.

It's very common situation.

That's a good point. Long term my daughter is probably better off having a supportive family even if they make her feel like the odd one out now and then

People don’t understand autism in girls. There is a stereotype of the functioning autistic person, and it isn’t a girl who has friends and popular hobbies.

Your family’s reaction has come from a lack of understanding, and is a reaction that I think is common. People will struggle to believe they are seeing something when they already believe that something looks completely different.

I’d try and find an easy to read article or bit of literature to share with them, then ask them nicely if they could read it. If they still react badly after they’ve had the opportunity to understand better, then reduce contact. Don’t rush into it though. An imperfect family is better than no family.

Thank you...
in my (rather large) family there has never been anyone autistic.
maybe a case of OCD in the previous generation but undiagnosed. Everyone is otherwise colgate ad perfect: children all talented and successful at school, with great behaviour and multiple gifts.
It's a very lucky family and now my daughter seems the odd one out.

I have to admit it really hurts me when everyone raves about how great my other children are and then says some token thing about how my daughter is "so strong willed with such a big personality" (translate as rigid and loudly screams in many situations when not happy)

This is exactly what we say to DC2 as there’s a child in the class (reception so age 5 also) with autism. His behaviour is different to the others, other children can see this and it warrants an explanation

Non of their reactions sound malicious, they probably just don’t understand fully as they lack the knowledge and insight and therefore have been a bit clumsy with their words. Also people have their own shit going on so although it was nice your friends asked a few questions, they are likely caught up with their own worries/timetable. if you’re keen to talk more then why not start a conversation

I have an autistic child. I share his diagnosis on a “need to know” basis - his teachers obviously know, extracurricular leaders know, some of his friend’s parents know if they’ve had him for an extended play date or a sleepover. He benefits from them knowing. He doesn’t benefit from me broadcasting his personal information to all and sundry, so I don’t - it’s not a secret, but it is his personal information and once it’s “out there” it can’t be taken back. As he approaches secondary school he’s very glad some people don’t know. He has chosen to tell some of his friends, which I’m very supportive of. At no point is it any of his grandparents business who knows what and I’d be furious if they were “celebrating his differences” with everyone or telling other small children about his diagnosis - his differences are his, not theirs. Absolutely I’d take a step back.

I would say give them a chance, but if they do openly say things that you disagree with then pull them up on it and if there’s no improvement then reduce contact. I agree though that your mother should not be going around telling everyone. Maybe explain it to her that it would be like you going around and telling everyone about her medical history. It’s private information. I don’t tell anyone other than those that need to know about my DCs autism. I just say stuff based on the situation -e.g he struggles with crowds so we won’t be going to that event etc.

ah to be clear, the friends that went quiet the discussions were like:

• oh really? You think daughter is autistic? Isn't she sociable and smart?

then change subject because they clearly think I'm making stuff up. i don't necessarily need to talk more about it, just to be believed.

My MIL angrily told me my children were not autistic, why did I want to label them and they were probably just tired. I don’t talk to her anymore. She’s an ignorant twat. It was so disappointing to realise.