about people’s reaction when I’ve told them about Dd14 asd diagnosis

[User0610134049]

I’ve confided in a few people about dd14 being diagnosed with autism.

i suppose I expected some might be surprised as it’s not perhaps overly obvious and she tends to hold things together mostly at school but had loads of issues with socialising, anxiety and communication:

Every single person I’ve spoken to about it so far has said something along the lines of ‘well I think we all are on the spectrum, aren’t we’

AIBU that this makes me feel a bit shit?
can’t quite explain why, but it just does

Actually, what @Tigofigo said. That's much better!

What response did you want, OP?
Coz I wouldn't know what to do with the information.
I might come up with a feeble "So what do you think that means?" in response.

Would "Are you glad to know that?" be better : coz that sounds leading & wrong thing to say, too.

In my opinion it's just crazy that we use the same word for a basically normal person with perhaps some social anxieties, and a non-verbal, hand-flapping completely mentally disabled person.
please be mindful that some of the people reading your post have children with learning disabilities who stim. There are better ways of talking about our children. What you’ve missed is the fact that our children ARE what you describe as basically normal aka “human” just as blind, deaf, paraplegic or amputees are. The idea of a spectrum is not a line from able to disabled it’s an attempt to describe how different aspects of a disability interact and can make the difficulties harder to overcome.
eg moving away from asd if the impairments were with sight, hearing and anxiety, you can see that someone who is both severely deaf, severely visually impaired and a little anxious, might struggle more than someone who was very anxious, blind but had very mild hearing loss. The weight of the different elements is your place on the spectrum.

neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Well my ds is extremely intelligent, very able linguistically as long as you aren't asking him to make general conversation and flaps his hand a lot (but only ever in private) @HeadOnShoulders so where would he fit on your scale? Truth is, he's autistic.

Appreciate all the comments thank you

good question about what I’d like people to say - as someone else suggested I suppose
oh wow how are she/you feeling about that
or
i didn’t realise/I had no idea (because tbh until a couple of years ago I wouldn’t have thought it)
or
gosh I didn’t know she was struggling so much

it’s hard because I think that is the thing, she masks so much and it’s exhausting for her and for me and not something I’ve talked about that much with people.

i do know that they mean well but it’s exactly the attitude from the poster above that it’s somehow rife and everyone’s getting diagnosed left right and centre sort of thing

i really appreciate all the comments from peoples who can see where I’m coming from and have expressed it better

the diagnosis was a relief in some ways but also sad for me because I realise it means she may struggle with certain things her whole life. My youngest dds behaviour at home has also been very difficult lately and so going through the assessment process with dd1 has made me think about her and worry for her about the future with friendships etc

Fwiw I do feel worry that having the same terminology for people who present like my dd and people who have severe learning disabilities along with asd and may be non verbal, need 24 hr supervision etc, takes something away from those families whose struggles are very different and in many ways greater

I don’t actually think all people that do this do mean well.

There are people that basically hint that they don't believe you, that anyone can get a diagnosis if you say the right thing and that parents want a label for their kids. There’s been a couple of threads on here fairly recently full of ‘experts’ telling others their thoughts. Then they question how a ‘label’, (they mean a diagnosis but they’re too ignorant to realise that), can help. And despite many people explaining exactly how it has helped them or their children both practically and emotionally, they still minimise.

It does piss me off. But then I remember they’re just really, really fucking ignorant and unaware and their opinion really is irrelevant. Parents know their child best and the criteria for diagnosis is clear.

Very frustrating, I'd be tempted to say "oh which educational psychologist diagnosed you?" Either they are being dismissive or trying to make you feel better by 'normalising' it either way it's offensive to your daughter and her experience of life. I had a lot of "I'm so sorry' which made me furious as my son is fucking awesome and needs no grieving for his existence. Someone compared it to someone they knew who's baby was born with one arm!

I agree. I don't think it's well meant. It's dismissive.

I know lots of autistic children. I know some who aren't cognitively impacted in any way but still can't cope with mainstream.

We're not all on the spectrum. And the trend for self diagnosis really pisses me off too.

I was diagnosed as a 30 year old woman and I've had that exact phrase said to me by my social worker.

I totally hear you. My sister in law (who I love and have always got on with so well) said " aren't we all on the spectrum" when our 16 year old was recently diagnosed following two awful difficult and upsetting years with her. I said No actually I don't and she pulled a face at me and laughed.
I sometimes feel like I am overreacting but it has totally changed my feelings towards her and affected how I interact with her now.

People can't do right for doing wrong in this situation. Your friends and family don't want to 'other' you're daughter so are probably trying to make you feel better about the diagnosis and make her feel more included.

If they said anything like 'oh god how awful! You must be really worried about her', it would be like they were looking at your daughters diagnosis negetivley.

I have adhd, diagnosed as an adult. What I hated most when I told some close friends and family was when they responded 'that explains a lot'.

@User0610134049 I think that, that the needs of the defunct 'Asperger's' vs non verbal are so different - but then we've got friends with 2 dc, one of each 'kind' of asd if you can categorise so baldly, and the high functioning one has spent the best part of 10 years having suicide attempts and severe depression, completely incapacitated in life despite brilliant school career.

My DN is similar, and as an adult he never been able to work, is severely depressed and had a two year stretch of barely leaving the house.

My point is that the high functioning label is deceptive, you can have a better school career but find your life extremely impaired.

It’s a difficult situation for everyone OP. I’ve had people share these news with me about their children and I’ve been very self conscious about not making it too big of a deal because it IS a sensitive topic and I’d never want them to feel bad. I understand your reasons for feeling the way you do, but it might be hard to say the right thing all together and just bear that in mind. I really appreciate the explanation from posters who compared it to pregnancy, that resonates with me.

Yep fullly understand. I hate that too. I am waiting for an autism assessment and that is exactly what my best friend said. GRRR!

I actually felt she was trying to tell me it was not a big deal but it is to me.

I think a lot of people still don't understand autism. There are still a couple of family members I haven't told as I don't think they would get it and I think the rest have guessed my dd is anyway. I confided in an older cousin who is a nurse thinking she would understand and all I got was 'well she never speaks to me or even looks at me'. Um because she's autistic !! I give up.

@greywinds yes you’re absolutely right
i understand Aspergers isn’t an official diagnosis any more and why but I do think it was useful.
i also totally agree with what you said about ‘high functioning’ autism and actually at the assessment they said they don’t use that term anymore exactly for the reasons you said.

I’m Autistic and the best response I got to disclosing my diagnosis was definitely “How do you feel now you know?”. Then I could explain the impact undiagnosed ASD had on my life, the relief that came with my diagnosis and also the frustration that I struggled for so long.

If anyone says “Aren’t we all on the spectrum somewhere?” I will gently challenge. I explain that while everyone has autistic traits, the point of diagnosis is that those traits impact so significantly on your life that it makes it difficult to function. It’s not surprising this attitude comes about though, when “experts” like Simon Baron-Cohen do documentaries spouting exactly this.

*I don’t actually think all people that do this do mean well.

There are people that basically hint that they don't believe you, that anyone can get a diagnosis if you say the right thing and that parents want a label for their kids. There’s been a couple of threads on here fairly recently full of ‘experts’ telling others their thoughts. Then they question how a ‘label’, (they mean a diagnosis but they’re too ignorant to realise that), can help. And despite many people explaining exactly how it has helped them or their children both practically and emotionally, they still minimise.*

I agree. My youngest has a diagnosis and I’ve had a fair amount of this. I’m still trying to decide how to respond.

I haven't had this said but I know some people think it. Having had the experience of parenting a non neurological child before and after diagnosis, I would say something nice about their parenting, because it is a terribly isolating (and expensive!) thing to experience such struggles bringing up a child and parents may have received a lot of judgement (even if it's just from themselves).

Non neurotypical that was meant to say.

You wouldn't get a diagnosis just because you have some social anxieties. You'd have to have far more problems to get a diagnosis.

It is just inane small talk, people will generally try and say something positive when hearing about a friend's news.