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.

Sorry final thing from me two quotes I read tonight:

you must keep pushing because no one will fight for your child like you will. You’re their best advocate.

secondly;

it increasingly became obvious that it wasn’t my job to help my child understand the world, but get the world to understand him.

though not related to this, tomorrow my son is going for his autism diagnosis- been two years on the waiting list in limbo land for so long. Will it negatively label him? No. It will help us further to understand the extent of his abilities and hopefully guide us to the right resources- I say hopefully because with a government wanting to remove EHCP funding, tribunals and PIP and councils who make illegal funding decisions rather than child need, my faith has wavered in the goodness of humanity!

I genuinely think unless you live with ND children, it can be difficult to fully understand.

My mum is forever telling me to “just tell” my stepson not to do something, or various other bits of advice that she used with her 2 completely NT children. He’s barely verbal, has severe complex needs and is cognitively a toddler despite being 8 years old. There is no “just telling” him anything.

She means well, she just doesn’t fully “get it.” In time, your family will hopefully develop their understanding and you’ll see a difference, but arriving on the same wavelength as you will be very difficult because they’re not living in it.

it's a strange point. It's one thing to have your own stuff going on and not engage. It's totally another thing to gaslight someone and imply that whatever they are concerned about is all in their head.
politely, it seems like you have no experience with this sort of topic and I don't think your points are very helpful.
others have made the point about keeping family close even when they're being knobheads. But don't come on this thread to convince me my grievances are made up. That just makes me think you're that insensitive cousin 😂

I hear you. The journey with the NHS is soul crushing. One year of calling almost weekly without even being able to understand if we were waitlisted or not.
glad to hear you're finally getting there. I hope the diagnosis will open up access to more help ❤️

No, it’s not a strange point, you are not being "polite" and I understand what @Ablondiebutagoody was getting at. People don’t know how to react and some are trying, clumsily, to say something they think, wrongly, will be comforting. It is ignorance, not malevolence.

Some distance might be a good idea, at least for now. It's probably more down to ignorance more than anything else but you also don't have to put up with it with all you have on your plate already.

My son was diagnosed with cancer last year and I also experienced some ignorant comments, some were of course incredibly supportive whilst others just didn't know what to say and didn't agree with us giving permission for school to tell everyone including the children so said nothing at all.

I don't think they are made up. More like the extreme end of over-sensitive, bordering on obsessive, and not worth the headspace. People don't understand. Politely, get used to it.

they clearly don’t know enough about autism to understand or identify autistic traits and so it’s probably just a bit confusing and new for them. They may even think they are reassuring you by playing down the autism. Give them time to learn and grow. Also bear in mind that some of your friends or friends children are likely autistic too but completely unaware, so in a roundabout way your child’s diagnosis may throw up challenging questions for them. Either way they are all likely busy with their own hectic timetables and worries, maybe they haven’t given your child’s diagnosis much thought as she’s still the same person to them.

Education is key to understanding! Send them links to the national autistic society page

I have 2 autistic girls age nearly 9 and 10. 9yo is verbal and 10yo is pre verbal (barely verbal, the odd word or phrase, some echolalia). 10yo diagnosed quickly by age 3, 9yo diagnosed age 5 and it was struggle to get taken seriously. Family and friends said all kinds of bonkers things, even the eldest, who didn't meet milestones was barely believable to most people that she was autistic (but she's so affectionate/quiet/engaging etc) she's 10 now and there's no doubt at all but in the early days it was pretty lonely.

Here's what I learnt. When it's new (to you) it's a process of acceptance, at the moment, naturally, you are coming to terms with this diagnosis. Your DD is still little so it feels very strange and isolating. Your future with your DD is going to look different to traditional parenting and that's overwhelming right now. While you're in the phase other people's comments and beliefs hit hard because you need support and someone to understand you and your DD's differences but all around you is ignorance.

One day you'll stop bothering. You will just be done with explaining autism to family and friends! (unless they ask) that's what happens. It's too confusing to anyone who doesn't experience this first hand. In the meantime, find a community! Go to special needs events and places to talk. It really helps! X

My in-laws were similar when my boys received their diagnosis
They were just worried and didn't understand autism
Fast forward 20 years ,when I got my diagnosis,the in-laws were much more accepting.
I've never hidden my diagnosis,and my boys are open about theirs ,we are not ashamed,we are proud of the fact we are coping with a difficult condition,and carrying on with life .
Autism is just matter of fact in our family

People who tell you are being unreasonable igly likely have zero knowledge of autism and will never understand how tough it is to hear that you are making it up, that there are no issues etc. It is also hard to have to contantly educate people who just wont accept what autism means.
We were very lucky with family members, but I have reduced contact with anyone who was making 'informed' comments ebcause they read an article or such.

It is very clear you have no experience of autism and are an armchair expert, no ne should get used to hanging around gaslighting knobs.
There are plenty of people who, unlike you or OPs family, do understand or at least want to lears, so its perfectly fine to reduce fmaily contact and spend time with people who are not idiots.

I think the problem is that autism is something quite complex and nuanced with a lot of specialist language. While it would make your life easier if everyone took the time to educate themselves about and understand all the nuance this isn't realistic. Some people simply won't be able to learn all this due to their own limitations.

I also agree with PP that many others have their own significant challenges and aren't likely to devote the headspace to this over learning how to deal with their own problems. We can't all care about or educate ourselves on everything equally.

It might be easier to deal with well meaning family members if you have realistic expectations.

I think that as the parent of a child with additional needs, you will inevitably over time develop a thicker skin. You will learn to be unapologetic about how you parent her and will care less what others think - though you will of course remain utterly protective of her.

I'm kind of with your mum re the diagnosis. We're taking the approach of being completely open and honest with dd, and others, about her difficulites. Because ultimately people will only develop understanding through greater awareness, which requires openness. And while my dd is aware of her quirks, we now embrace the lovely, funny side and brilliant side of them at the same time. She's much more accepting of herself as a result. Plus, she knows that we can help her develop strategies to manage difficult situations that don't just mean she gives up and says she 'can't do it'. I recognise though that each autistic person is different and what works for us may not work for others. It's entirely your choice of course, but acknowledging her autism with others has helped her see her wonderful, brilliant self as well as the really tough things.

Our DD was ridiculously bright at school and now
Has a high flying and very highly paid job in IT.
She's also autistic.
Whilst our immediate family get her, understand her and adore her. Some extended family have been horrible, and she's been excluded from a wedding and all the associated hen parties, because the bride thinks she looks at her the wrong way and apparantly "gives her the creeps". She's been called rude and stuck up and this particular (Mrs popularity) cousin thinks that she doesn't have autism at all.
It's very disappointing when your own family let you down.

There is a child in my wider family who has been diagnosed with autism and another who is currently being assessed.

I can see how hard life is for their mother. The older of the two children has no idea at all re safety and would run off all the time if they could. They go through phases of putting non-food items in their mouth. They have an obsession with a particular cartoon character and want to watch endless repeated one minute extracts from the relevant films/programmes. Not toilet trained. Wants to be spoon fed. They are non-verbal

The other has a significant speech delay and tantrums a lot.

My husband and I try to help. We have read stuff, listened to the children's mother and seen her in action. We know she loves the children and is doing her best. We understand how tired she must be.

We also know that there are times when she is not well, because her own health is suffered. Sometimes the children will spend quite a lot of the time strapped into buggies etc when out, because if it is just the mother and the two children, the older child will run off and try and jump into a pond or run into the road.

But we also think - as we'd think with NT children - that there are things we would do differently.

Quite apart from issues around neurodivergence, we have observed the shift towards a much more child-centred and protective form of parenting. We come more from an era where the focus is on enabling children to grow and develop through laying down secure boundaries and through instilling socialisation around say, learning to feed yourself and sitting round a table - not always 'waiting until they're ready.'. Having active play and limiting entertainment via screens.

We do our very best while visiting the children's mother to relate to the children at the point where they are now. But I've found that even, say, suggesting I take the younger child out of the buggy where they are staring at their mother's mobile phone - because I'd be able to supervise and keep them safe - will result in a snapped, 'They'll let you know when they're ready to come out.'

So all I'm saying is that sometimes it can be very hard to help, unless you are willing to be the equivalent of the nanny who is paid to do exactly as the parent instructs. (There is a part-time nanny.)

Sometimes because it is so hard and relatives can be made to feel that anything they do is the wrong thing, they just opt to step back. And then they are made to feel in the wrong as well.

I voted YABU because you will lose friends and family anyway without trying to.
DS has ADHD and epilepsy.
My friends and family generally give lip service to understanding but never come and see us any more and if we ask to visit or meet up they want to do it without the kids.
My DM thinks everything can be fixed and keeps asking why we haven't tried to get DS a better school/why does he behave like that/surely we have found a cure by now.