family blanking important news

[letsgooutstiiiiiiide]

We have recently started telling family members that DS (2.5) is in the process of being diagnosed with autism. He has had a rough time with frankly appalling sleep from birth, reflux, food allergies, oral aversion, general unsociability and stress in social contexts, etc. Some family members have offered sympathy; others have offered judgement of my parenting.

Responses to the email giving details vary from "sorry you have that to contend with, happy to be a listening ear if you need it, let me know how i can help" through "it's good you have the situation under control" to total silence for weeks... eventually followed by "I've booked a cruise. How's your new fridge?" "We went out to dinner last night... "

I doubt it's coincidental that it's the judgy sods who have offered silence and smalltalk. They are also the ones who can't handle the idea they might be related to anyone "with problems".

The three family members who recognise autistic traits in themselves are the ones who have been compassionate.

Where do we go from here? Tell the judgy sods again in the hope of a response that opens up discussion? Or just wait for the inevitable judgements poured all over poor DS as he gets older and they expect more of him?

We can't cut off the judgy ones without also losing the compassionate ones, unfortunately. We are already low contact (different country).

the fridge/cruise comment was my mother

Because for everyone else life goes on as normal. Are you now expecting every bit of contact to be about DS? Only you will be thinking about it 24/7.

the judgy sods who have offered silence and smalltalk
Probably because they don’t understand it and don’t know what to say.

I don’t actually recall anyone saying anything much about DS when he was being assessed apart from asking if we had heard anything yet because it took several long months for assessment.

What responses were you hoping for/expecting?

Why are you sending them all of these updates and emails? Its unnecessary and you know they are judgy and unsupportive. Stop seeking their understanding and approval. The only people who need to know at this stage and you and your partner. As children, a lot us are conditioned to seek approval from our family and society tells us that they should be our support. BUT if they arent you need to disengage a little and find a good friend to offer emotional support. We've had to start to control the flow of info around medical stuff for our DD with family who are unphased, rude, unsympathetic or just use it for gossip. So we dont tell them because they dont need to know anything yet. Stop putting this pressure on yourself. You dont need their approval.

It's pointless to force a confrontation. If or when you have a diagnosis it may be worth giving them a copy of the report plus relevant printouts from the NAS website etc; otherwise simply be prepared to meet evidence of prejudice or denial when you come across it.

Thanks for all the perspectives.

To clarify, email is because that's how we mostly communicate normally. There's typically only a skype session every few weeks with half an hour of chit-chat, typically interrupted multiple times by dodgy internet. So anything big where you want to get a point across, you do by email.

Also, PIL have typically corresponded with us by email several times a week, and while they have made bitchy and judgemental comments to my face, they've been pretty nice by email (they know enough to not put bitchiness in writing). We also had thought they'd be intelligent about this because MIL is a retired psychologist and FIL is generally someone who when confronted with something new, reads up on stuff and finds something constructive to say. They are also typically people who DO always know what to say when given important or bad news. So the sudden switch of PIL to "la la la I can't hear you" - more my mother's modus operandi - is a shock.

Re my mother, I wouldn't have expected anything different. It's just sad that my dad isn't allowed to behave independently of her. So they essentially have no relationship with DS and now look set to not develop one.

Re ageism - people of all ages can be idiots. Here it's the 80+ year old who's being intelligent, the 70 year olds who aren't.

I agree waiting for a diagnosis probably makes sense before trying to have any further discussion.

How sad that you have no effective help or support from either side.

At least you know now what you’re dealing with and perhaps the PIL are in denial about their own status wrt autism, perhaps you struck a nerve?

Your h sounds supportive and understanding, looks like he knows what his parents are and he’ll not “let them get away with it” somehow. You have to support and be there for each other

Use this to bond more closely, ultimately you’ll come through this stronger as a unit.

Huge hugs to you

If you mostly chat and communicate by email then I would assume that they are not that close by. So other than physical support, what exactly do you want from them. To do research for you, or make sympathetic sounds? I'm just trying to figure out why you are making an issue out of this. FWIW my ds age 3 also has some issues which he is receiving help for, I dont expect my parents who have never gone through it to understand. Actually I knew nothing about ds issues, until I experienced them myself.

Some people feel uncomfortable with news like this so they change the subject or just ignore it. It’s crappy but it happens..

Others don’t understand and need to be educated .. you will have to have patience with them.

Hope you have good friends as a support system..

I’m sorry they didn’t react like you expected. Maybe they don’t know what to say for the best. It’s always awkward responding to news which isn’t necessarily happy.

I think with children with disabilities it’s often a case of “it is what it is” what more can you offer? Maybe wait for the diagnoses, after all you’ll know the next steps then.

Before anyone jumps on me I have a DSD with developmental delays (toddler in older child’s body), partially sighted, autistic and health conditions.

I would just give them information on a need to know basis. My late df was very resistant to idea that my ds had autism. We just kept to ourselves until he got the diagnosis, by which time df had got himself to the front of the 'totally onboard' queue and turned into ds' biggest supporter, embracing his disability and fiercely defending his right to be the person he is.

I just sent a text to my 3 siblings when we got the diagnosis. Only one sibling didn't bother replying and I had it out with him a few months later. Interestingly, this sibling now has a child who clearly has some differences, but he and his wife are actively ignoring it as they don't really believe in disability

Lots of folk were worried that I was getting ds diagnosed too young (he was 2.5). I don't think anyone is concerned now that he isn't disabled enough for his diagnosis - he is the most overtly brilliant oddball on the planet and couldn't give a flying fuck what anyone thinks. I love his renegade spirit and complete refusal to consider anyone else.

This does seem to be a thing. Have a look on the SEN boards. I am pretty sure my mum thinks my son's autism is due to me not playing with him enough.

I don't know what you want either. My husband has a heart condition and has tried to hang himself twice. No one has made any comments to me at all and to be honest there's nothing that they can do. My niece has been diagnosed with Tourettes, adhd and autism. Again she's just our niece to us nor a list of conditions and we treat her how we always have done and we enjoyed her 18th birthday party.
This is big news for you as it's what yuvr been through so far, sometimes there is a grief process for you and a worry about what's ahead.
If you want a response from people you need to tell them- they are not mind readers.

What are you hoping your family will respond with?

This is big news for you, but not for everyone else. It may seem awful but it’s highly likely no one cares. Everyone is busy living their own lives and while this may be devastating for you, it isn’t for everyone else.