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).

I wouldn't bother emailing again. Bring it up face to face, then it's impossible for them to ignore it. It could be that they don't know how to respond? A bit like a bereavement, when it's difficult to find the words. Did you really get the fridge comment?? How insensitive!

I am sorry you are having a tough time. It's a long, hard road. I have been where you are.

However, not everyone will respond how you want them to. And they dont actually need to know the details.

If I was you, I would take people up on their offer to be a listening ear and not keep trying to engage the others in the process.

It's difficult and I hope wish you luck on the road ahead.

You seem to be projecting what you think the "judgey" people will think...And in the future too?? What is it you want them to say?

It's always disappointing when family don't give the support you would ideally want. But that's the old saying isn't it - you can choose your friends but not your family.

Presuming all the people you mentioned are adults, I don't see why you can't keep in contact with the nice supportive ones but reduce contact with the others?

I remember when my cousin was in the diagnostic process about 35 years ago. Nobody then had heard of ASD. His parents were desparate for help. All they got from our family was "He'd be fine if you didn't spoil him", "he'll settle down", "What do you expect when you adopt, you don't know his background" and memorably "He needs a bloody good hiding"

Oh OP, it sucks when family are just crap like this. My DD is being assessed for Aspergers and my EX in laws couldn't care less. They have seen her once since January and live 5 mins away. When we told them I was pregnant, exMIL said "oh right, but more importantly, did you get your gutters sorted today?". Some people are clueless.

Having a little one with ASD is hard enough. I am finding that keeping the main adults in DD's life in the loop, educating them as to how Aspergers presents in DD, and coming up with boundaries and rules that are in place at home, at ex's, at my mum's house helps.

Sorry, bit long winded. Basically, focus on those who are in your little ones life and who are offering you support. Put the others to one side for now.

Also, are there any support groups in your area for people whose children have ASD? Could it be worth trying to find one, just for the support and empathy?

Welcome to the world of parenting an autistic child.

I'm afraid this is just the start of your journey and you will be judged a lot in the future. Not just by family but members of the public, friends and professionals. Do what is right for your family and child. Rise above the rest. Good luck.

Just to clarify the fridge/cruise comment was my mother; the other judgy ones are PIL. My father is compassionate but dear mother dictates what he does so he won't dare to do anything bar the initial email (which he will have deleted lest my mother find it). DH accepts PIL are unfair in their bitchiness to me but wants to remain low contact rather than NC.

I agree they may never respond the way we would like. But letting them get away with it feels like I am not doing enough to help/protect DS. Thus wondering if attempting face to face confrontation is worth it. With PIL and my mother it will inevitably be confrontation - they are not able to disagree politely or helpfully.

Personally I would wait until you have a diagnosis. They are unable to offer you practical support as they are in a different country, and you already have offers of emotional support from other family members.

At this moment in time the judgy ones are just thinking that you won't get a diagnosis because the only problem here is your parenting, or maybe they are embarrassed that they judged you when it is now likely that your ds is not nt. What is to be gained from pressing them?

Once diagnosed, you can give them more info about autism and manage their expectations about ds behaviour in family situations.

My father is compassionate but dear mother dictates what he does so he won't dare to do anything bar the initial email (which he will have deleted lest my mother find it)

Wow. Holy shitballs.

"I'm sorry one of your parents is abused by the other parent" is probably the only acceptable comment.

Prepare to raise your DS alone without any family support - but it sounds like you already knew that.

We have recently started telling family members that DS (2.5) is in the process of being diagnosed with autism.

Tbh I wouldn't respond till there actually is a diagnosis. But then there is a lot of ASD in my family and most of them turn out OK and happy. For the parents it's more difficult parenting and costs more energy and frustration but that is the risk you take when becoming a parent. Each child is a gift and you don't know what you will get.

What do you want your family to do? He either has ASD or he doesn't. The diagnosis will explain things but your DS will still be the same.

Confronting them will neither help or protect your child.

There is no need to do this.

Once you have a diagnosis, if you see them you can pre explain about how ds behaviour may exhibit or tell them things like 'if he does x, dont not interfere me and dh will handle it'.

Right now, there is no need to have a face to face converstation about it.

Currently you feel your ds needs a diagnosis and believe there is something there. They either don't know what to say or dont agree.

But how, will having it out with them actually impact any of that or help your son?

I really relate. DD was recently diagnosed at 10. We went away w my family over half term and I (naively) thought that my family might ask how she's doing or how we were doing. Not a sausage. It made for a very lonely trip as I felt judged when she eg had a meltdown.

Do you have siblings who are more understanding?

We have a very difficult, judgey and outspoken family member and the siblings cooperate to fend her off from her target.

And P.S : sending a hand hold as you go through diagnosis etc.

letting them get away with it. This is a really odd thing to say

I understand the convenience of email but I’m confused by your expectations. Did you really think that the email would win the ‘judgey’ ones over? This feels more like an exercise in finger pointing and I can’t see who benefits from that.

Some people are unsupportive, some people are judgey and some people can’t handle anything other than ‘we’ve got a new fridge l’, who cares. Avoid them, there are more productive ways of investing your energies in trying to get the reluctant on to your side.

What exactly is it that you want from them? It sounds like you are looking for a fight with them. Are they involved in your daily life where they have such an impact that their support will affect your ds? They dont have any experience of this, not sure what you expect of them?

letting them get away with it.

Get away with what exactly? Not agreeing with you or not responding exactly how you’d expect? I can’t imagine what you are and will go through but you can’t compensate for a lack of control in one are by trying to control people.

I understand the convenience of email but I’m confused by your expectations.

Same here - we waited until diagnosis was confirmed, although we mentioned our son's learning delays before then; but also, we didnt't email anyone in our family to tell them. We waited until the next time we saw relatives or we were speaking on the phone; and mentioned it then.

I find it really weird that you've emailed family about something like this, almost like a round robin - "in June we went to Corfu; in September Lucy started school; in April Rory started the diagnostic process for Autism".

I understand your disappointment, but a different response was unlikely to have come based upon your post. You need to accept their limitations for support and reach out elsewhere. I wouldn't bother emailing updates, it will simply lead to further disappointment

It's annoying, but I wouldn't go looking for trouble at this stage. You've enough on your plate, and as you don't have a diagnosis yet, there's not a lot to discuss.

I understand the frustration, (I told my mother the other day, that my daughter would be making her a great grandmother in November. She said "Oh, is she?" then went back to watching TV, then talking about her friends)
People are weird.

To be honest, unless you have a severely delayed child who just sits rocking, the older generation probably don't really understand what the problem is - diagnosis of autism has changed over the last 30 years or so, and kids (and adults) like your child and my dd would have just been considered quirky or eccentric in the past. We told very close family that our dd had delays (speech, fine motor, gross motor and social) at 2 then didn't say any more until we got our diagnosis at nearly 3, but even 17 years later my mum doesn't really think dd has a problem because she did learn to talk and is clever, and she wasn't keen about her going on anti anxiety meds. What I'm saying is people won't keep asking, they won't even think it's a problem, they get on with their lives. I know how hard it is because I have been there but it gets easier I promise.

“To be honest, unless you have a severely delayed child who just sits rocking, the older generation probably don't really understand what the problem is - “

Ridiculous ageism. These people are probably only in their 60s, maybe not even that.

Many many people of all ages do not understand autism, and have no clue about how it impacts a child and a family, less clue as to what to expect or how to communicate with the child. And some people are just pursed lipped judgey pants.

OP: it must feel lonely going through this without the support of your parents. I hope you have friends who understand.

Wait til a diagnoses and then send them some reading material to help understanding. Doesn’t matter if they don’t read it, they can’t claim ignorance later.

When you next see them, send an email with tips and hints about how to best interact with him. If they don’t listen you can bring it up and if they push back, leave.

You can’t control how they react. Just control how you act.

Do everything right for your son, if they don’t play ball, you can withdraw in good conscience.