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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to be so sad at family member diagnosis of high functioning autism?

95 replies

mostlymindblown · 09/01/2017 14:55

Found out today my 7yo DN is thought to have HFA.

It's not a total shock as she has exhibited traits from a young age and I know it is good that she has an appropriate diagnosis so the right support is in place for her and the family at home and at school.

I guess I just hate the thought of her struggling in life as I love her dearly, shes such a lovely, bright girl. I just want to give her and my Dsis a great big hug and make it all better...

OP posts:
Manumission · 11/01/2017 10:14

It is very noticeable that when other diagnoses are posted about on MN, there is usually a disclaimer or a preamble of the "I know lots of DC with x have great lives" or the "I don't mean to offend but" variety.

But not with ASC for some reason. It's like an acceptance or assumption that autism really is that shit.

Manumission · 11/01/2017 10:15

And we take it on the chin on the basis that parents are in shock or upset.

But I've had enough of it TBH and this isn't even a parent or any kind of first degree relative.

TatterdemalionAspie · 11/01/2017 12:30

I cried when DD was diagnosed, even though I expected it, requested the assessment and was hoping for the diagnosis. Hearing it in black and white and the confirmation of my suspicions still knocked me sideways.

My diagnosis had a big impact on me, too. I was relieved, but couldn't quite let myself believe it (still can't, quite often), as I felt as though I were just trying to find an excuse for how I've always been (and hated myself for being).

The diagnosis doesn't change the person; they're still exactly the same child/person as they were before the assessment process. It just lets them (and those close to them) understand themselves better. Smile

mostlymindblown · 11/01/2017 13:19

OP here.

Thanks so much again for all the information and links / suggestions for sources of info. Have passed some onto Dsis and she is also very grateful.

Re the 'sadness', its not that DN has a specific condition, as has been said, she is still the same person, there is now just an 'official' assessment of a particular group of traits.

I guess its more that I am fully aware that not everyone is as accepting ,understanding or keen to celebrate all of our differences as I wish they were. She has already been excluded at times at school and been said to be 'acting weird', and obviously this is very upsetting.

I am hoping that the right kind of support will give her the confidence to be proud of herself and build on her strengths whatever path she takes and in that sense I do understand that the diagnosis is actually a good thing.

OP posts:
Manumission · 11/01/2017 13:24

and been said to be 'acting weird', and obviously this is very upsetting.

A teacher said that?! Why is it "obviously very upsetting"?

mostlymindblown · 11/01/2017 13:37

Hi Manu,

No, not teacher! group of other girls.

And it was upsetting because someone I love was upset.

OP posts:
Manumission · 11/01/2017 14:43

I really think you need to get this in proportion. In a few years' time being one of the quirky "diagonal" crowd may well be something she sees as a blessing.

What primary school bullies see you as doesn't matter.

Some of the coolest people ever were (and are) aspie.

With difference comes strength.

I think it's seriously very important that the adults around her start living some positivity about it all ASAP, even before she's aware.

There really is no need to be sad.

Good luck.

WilliamHerschel · 11/01/2017 14:55

Echoing what others have said, it is so much better that she and those around her know she is autistic. I didn't find out until my mid-twenties and I spent so many years just not knowing why I was the way I was and wondering why I couldn't be 'normal'. Finding out I was autistic (or had Aspergers as it was then, don't think that is given as a diagnosis anymore?) was such a revelation. Everything started making sense. I wish I'd known sooner tbh.

Manumission · 11/01/2017 15:08

It's not in the DSMV william but it's still available via other, lesser used, diagnostic protocols.

Areyoufree · 11/01/2017 15:29

We are currently in the process of seeking a diagnosis for my daughter. She's the most awesome person I know. Really funny, quirky, hands flying when she talks, doesn't think in straight lines, stubborn, determined...I absolutely adore her. And there's nothing wrong with her - it's not like there's this hypothetical person she would be without ASD, I don't love her in spite of it, I love her because of it. It's who she is - all of it. And I don't want a diagnosis as a label or an excuse, I want it because when I say 'autism', it is easier for other people to understand the best methods for interacting with her. To understand that even though her language is ludicrously advanced, she might not understand what you are saying. To understand that if you try and pressure her in an unfamiliar situation, she might react violently. And that if that happens, shouting at her will make it worse. I want to help her develop skills that will make up for the ones that she wasn't born with, and to develop the confidence to be her quirky, engaging, enthusiastic little self, without worrying about needing to fit in. If we get a diagnosis, I will be happy because it may give me a bit more leverage with schools. Just to be able to have a conversation about finding ways to help her feel comfortable, and keep her stress levels down.

Areyoufree · 11/01/2017 15:30

Oh, and I am not at all suggesting that anyone has said that getting a diagnosis is a label or excuse - that's just the kind of reaction I have had in the past.

TatterdemalionAspie · 11/01/2017 15:31

No acknowledgement that your thread title could have been hurtful or offensive, then? Ok. Hmm

PolterGoose · 11/01/2017 15:48

This reply has been deleted

Message withdrawn at poster's request.

Areyoufree · 11/01/2017 15:53

I didn't say autism is wonderful, I said my daughter, who happens to be autistic, is wonderful.

PolterGoose · 11/01/2017 16:12

This reply has been deleted

Message withdrawn at poster's request.

Slimmingsnake · 11/01/2017 16:40

I'm up to page 3 of this thread....I have an adult child with autism.massive impact on our lives...been exceptionally hard going....I had no good thoughts about autism...today I started the ball rolling to get my youngest assed with HFA...nothing like my eldest.thats how I missed the signs.....anyway...just thanks for thread.it couldn't of come at a better time for me...your positive comments are helping me feel it's not the end of the world.

Areyoufree · 11/01/2017 19:06

@PolterGoose
Ah, okay! Of course, the irony is that my 'wonderful' daughter has spent the last hour winding me up to the point where I completely lost my temper and shouted at her. Bah.

PolterGoose · 11/01/2017 19:11

This reply has been deleted

Message withdrawn at poster's request.

JoffreyBaratheon · 12/01/2017 10:31

Polter I think it's more a case of, being sad as you come to terms with it, may be a normal and inevitable part of the process. That's not to say we don't move far, far beyond that grief, in time. I wouldn't minimise anyone's sadness here because it is sad, and tough. But I'd also take it as read that eventually, you feel different. As a parent, I mean. Because this thread is about how to handle it as a parent.

I love my son - as we all do our kids - unconditionally for who he is. I haven't let his autism and dyspraxia define him but I was always happy to use that label when I needed to, as it accessed - and continues to access - all kinds of helpful things he needs in order to be able to fulfil his potential.

I did feel a pang of sadness, must admit, when - one of the proudest moments of our lives - he was named as 'Student of the Year' at his college and refused point blank to go to the ceremony as he thought he'd got it 'out of pity'. In fact, I was told later, it had been adjudicated by a panel of people who didn't even know him... Although those who had taught him for a few years were as proud and happy about it as we were.

He's a lovely young man and it goes without saying, that I'd change nothing about him. Let's not minimise how hard it is for parents though when they first get that diagnosis - or assume that because we're talking about the negative, difficult side of autism, it implies we're not shouting from the rooftops about its good side.

It was a long way from that angry, screaming, sad, scared little boy bundled up in a winter coat waiting for the first time for the bus to his special school - to this brave, creative, outgoing, intelligent young man who is an asset to everyone around him. This is the case for all us parents, I think.

Ashvis · 12/01/2017 16:30

I see where you're coming from, Joffrey, I don't think that sadness or grief does need to be part of the process, it certainly wasn't part of ours. When we got ds' diagnosis our response was "yeah, we know. What next?" There have been no tears, and no grief about the diagnosis in our house (although plenty tears when toilet training!). Admittedly, I worked with a lot of children with autism before having ds, I saw what they were capable of with the right support and I'd talked with dh about these children. He didn't know as much about autism as I did before ds' diagnosis, but he knew enough to not panic or worry unduly. I think the sadness, in a lot of cases, comes about because of just not knowing what it really means. I've met other families who felt the same way as us, and other families who grieved enormously. Pretty much all the families I know who have children with autism are now very positive, and we all support each other through bad days and good. Knowledge and support are the two things you need more than anything else. I really think there should be more education at school about difference - including neurodiversity. Would help a lot of people to understand our amazing children, and help them cope if they they go on to have children with autism themselves. Big well done to your son Joff, he must have worked really hard!

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