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

Why are you telling all these people about your daughter's private medical information?

Exactly. Another example of a person thinking they know far more than they do. Why do people do that? Or maybe they’re just being goady. Weird

someone said this to me about 15 years ago and again someone said this on saturday.
simple ignorance

Because sometimes it's relevant? I've had friends (with my permission) explain to others about my medical problems. My mum had to tell her relatives (well, the ones we've not seen for years) about me, as I wasn't planning on staying somewhere with them for long.

So you think autistic people shouldn't br diagnosed?

We are normal. Autistic people are normal. But we are autistic. Not everyone is on the spectrum. It isn't a spectrum from 'normal' to autistic. It's the autism spectrum. It isn't a linear spectrum from mild to severe, it's a spectrum of areas where we might struggle but not all autistic people struggle to the same extent.

See:

the-art-of-autism.com/wp-content/uploads/2017/11/UnderstandtheSpectrum.pdf

Is Autism something to keep hidden/be ashamed of?

There is huge ignorance around what a spectrum is and how they are used.

A spectrum has an x axis which is used to represent a series of properties and a y axis which is used to represent the intensity of each of those properties. For instance:

The electromagnetic spectrum can be used to identify sources of heat and light. The sun will have a high intensity of visible light and radiation, and a bonfire would have some visible light but more infra red. @XelaM wouldn't have much of a spectra because they're obviously a bit dim. Each have their own identifiable spectra they are not on the same spectrum. @XelaM is definitely not a little bit sunny.

Or you could take a look at mass spectrometry which is used to identify the chemical composition of a sample, the sun would have a clear spectra being mostly made of hydrogen and helium, a human would have a very different spectra with carbon, water, iron and many complex molecules etc.

Or we could look at a spectrum of personality traits ASCs would score highly on poor communication, rigid thinking etc. @XelaM might score highly for ignorance, arrogance, self importance and lack of empathy or consideration for others. So it's likely than @XelaM has more of a narcissistic personality disorder than ASC.

My DD was diagnosed recently and to answer the posters who ask what should be said, I think my friends got it right.

I was asked how I felt about getting the diagnosis, and also how DD felt about it (she's 11 and high functioning so understands the dx);
I was asked what support can now be put in place for DD;
Some said "that's good news" or "you must feel relieved" as they knew we had instigated the process and it took several years.

Basically just genuine conversations. None of them have ever said anything remotely like we're all on the spectrum. I'm not sure if it's well meaning or not but it certainly comes off as dismissive.

Wow - it's tricky. Better not to say anything at all...but maybe that would be seen as being unsupportive too! I really have no idea....it's like walking on eggshells with people nowadays.

I've just realised I used the term high functioning which I know we're not supposed to do anymore, and I fully understand why. I don't want to minimise hers or anybody else's difficulties. I'm just not sure in certain contexts how to describe DD if I've mentioned she's autistic, but also want to get across for some reason that she's not non verbal etc.

‘You can’t say anything nowadays’....the words of offensive, ignorant people everywhere.

DP says the whole "we're all on the spectrum" thing. It's really minimising and dismissive and I find it really upsetting. He just doesn't get it. I was 35 when I was diagnosed.

Lately I see lots of people with self diagnosed autism. Non of us want to have it. I think it's best to be assessed incase you don't. Thoughts?

Probably because most people would first reach for "oh really, I wouldn't have guessed" and then reject it as either inappropriate/untrue.

I wouldn't know what to say unless we'd previously been discussing it.If you were either openly or obviously ND that would complicate my response too.

My DS teacher said that to me and it made me feel a 100% better about his diagnosis

My friends said congratulations, because they knew that was appropriate for us.

Another response could be "What does that mean for you now then? Will she get extra support now?"

Or "Well done for getting through the process, how long did it take?"

Or "gosh, you must be feeling so many different things right now, it's a lot to take in"

@bro101 I've got two thoughts - one, that's goady, and the second is that with 3 year waits for assessment, a lot of people are trying adjustments and strategies for people with autism to see if they reduce autism distress behaviours.

If you have to wait 3 years for an assessment, there is a role for self-ID especially for people that mask.

I can't see the harm in self ID as long as you're not acting in an entitled way and using it to understand your triggers.

I agree it's really hard to explain the level of function and that is not a static thing either.

Minimising happens all the time in many social interactions.

This. They are trying to say they see her as a full human being. They are trying to be accepting.

it’s hard for people to know what to say, especially when they are out on the spot, so don’t put too much store or analysis on it.

Hope that some support will follow your DD’s diagnosis.

I think there's often an information gap. If you have a newly diagnosed child, you've probably been reading up on autism for at least a couple of years. You know the language and the latest models, and you lose track of how little most people know about autism.

Cutting down their mistake with a witty jibe doesn't help anyone. Open up the conversation and see where it goes. Then judge the hell out them if they are being a dick.

This would annoy me too. I think perhaps people think it will make you feel better, but it has totally the opposite effect. They think a diagnosis of autism is something that you might be sad about, so they try to minimise it as nothing for you worry about - but in fact, for most people, a diagnosis is a huge relief and brings with it a lot of validation that is very helpful for the whole family.

Also, it's just factually incorrect bollocks, isn't it? We're not all on the spectrum at all. It's probably accurate to say that everyone has some elements of traits that form part of the autistic spectrum, but that is not the same thing at all. To be on the autistic spectrum people would need to have a) a lot of those traits and b) to a significant degree.

The 'Oh well, we're all on the spectrum really' response really reminds me of people who say 'Aw, don't worry, we all get a bit sad sometimes' to someone with clinical depression. They mean well, but it's so bloody unhelpful and so bloody minimising.

It's really not. Is there any other condition that you'd say that about? Oh we're all a little bit disabled? Oh we're all a little bit palsied? Oh we're all a little bit asthmatic?

No, because it's patently untrue and it's a silly thing to say.

All you have to say is ' how do you feel about that?'

Really not difficult.

Because it's nothing to be ashamed of and there's no need to hide it? And because it also might explain behaviours that people have questioned, and it might help them understand and include the OP's DD more easily.

If your child was (eg) deaf, you wouldn't hide that from people. You would tell them, so that they understood why your child might be seeming to ignore them, and so they could make sure they faced your child when talking to help with lip-reading etc. This is no different from that.

Because there's so much over diagnosis genuine cases get eye rolled.

Really? Any evidence for that statement?