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

It's because of people like you that autistic people struggle so much.

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

This post is a contender for a prize in the uninformed and clueless comments category.

Entrants need to prove zero knowledge of
A Autism
B The diagnostic process
C The harm their comments do.

Somehow being diagnosed as autistic is different from being told your diabetic or have cystic fibrosis. You wouldn’t say to someone ‘oh we’re all a bit diabetic’ or ‘why do you want a label’ about a syndrome.

There’s some real ignorance on this thread.

You wouldn't self diagnose yourself with cancer, diabetes, etc. So why is it ok to self diagnose with Autism?

I know people who self diagnose with Autism and it's obvious they have no idea what it really is.

It doesn't take you 3 years to get a cancer diagnosis though does it? None of mine are self diagnosed, I'm not saying it's not possible to abuse it but if you're on the awful wait lists personally I'd rather people tried to get help sooner than later even if at some point it was eventually decided they didn't meet the criteria.

Frowning on self diagnosis is another kind of gate keeping preventing people from accessing support. I'd have more sympathy for it if the wait list was 2 weeks.

This is exactly the reason.. Disliking a label in your jumper is not the same as understanding autisim.

I wouldn’t call diagnosis waiting lists of 2 years or more evidence of over diagnosis.

It is possible that "we're all somewhere on the spectrum" could be true in my household; it is also possible that it is not true. I do believe there are some category features even though autistic symptoms run from "almost functioning perfectly well in normal society" to "completely dependent and unable to communicate with others".

My eldest was also diagnosed at 14, and we find it helpful now and then. When I first talked to her about ASD she was maybe 11 or 12 and immediately read up on it and found that very helpful to accepting herself and understanding that she might indeed be different (and allowed to be different!) to her friends. She's due back from a gap year overseas soon, the school she's been working in have absolutely loved her - but also saw a huge "growth" in her over time. Now I'm pretty sure some of that was a transition from her "this is new, I don't know anyone, I don't know what is expected of me" mode, to "ok I'm comfortable here and I can be myself". I'm going to be having a chat with her before she goes to uni in a few months, as I do think she will benefit from student support (I think her uni runs a group targetting ASD students) just at the start of her studies, while she figures out how to function in another new environment.

My youngest was also described as having "autistic traits" at about 10 or so. Essentially at that point it was saying, yes he may well be ASD diagnosable, if you want to we can do a more detailed assessment, but there's no pressing need at the moment. Subsequently there has been little need to consider it, partly due to the school environments he's been in suiting him exceptionally well. I am however beginning to suspect he might soon benefit from learning a bit about ASD, perhaps before he goes to uni himself, as much to improve his understanding of other people's behaviour as anything else!

It has a large genetic component. Either you or your partner are likely autistic.

Whether or not it is true in your household doesn't make it a true statement. We are not all a bit autistic.

It’s shit OP. Hope your daughter gets good support x

@bigvig you don't know what you're talking about. You have to meet a certain set of criteria for a diagnosis, there's no over diagnosing. People are just more clued up nowadays and more likely to seek a diagnosis for themselves or their child.

If you met my DD and I told you she was autistic perhaps you would think she was an over diagnosis. She would make eye contact with you, hold a conversation. Maybe you would notice that her speech is a little quirky, but surely this polite articulate child, behaving perfectly normally, couldn't be autistic.

What you wouldn't see is what happens at home when she's not masking. The distressing meltdowns every morning because her clothes don't feel right. The awful things she says to me and DH, shoes thrown at us, the spitting. The absolute terror she feels around dogs and birds. The fact that she still can't settle to sleep by herself at 11. That she can't take a shower because it hurts.

Unless you live with somebody and see behind the mask you can never know the challenges they face on a daily basis.

I think a lot of people have autistic traits - but they are not actually autistic and wouldn't be diagnosed as such. When I was teaching we had in-house training on autism. There was a list of traits and everyone in the room, all 20 of us, had at least 2 of the traits on the list. I think that's where the confusion comes in. I'm glad your DD has had a diagnosis and I help she gets the help she needs. X

On the surface, a lot of autistic traits can seem to identify with introverts, but this never takes into account the sensory and emotional regulation issues amongst others. My dc might seem fine to you, and as soon as you've gone home she's being sick from a migraine due to social over stimulation.

Indeed, mostly I think it's their dad's side, sometimes I think it may be mine, could be both.

I absolutely agree that we are NOT all a bit "on the spectrum". That's what I was meaning by "category features" but I realise that wasn't clear!! I've been annoyed for years about the abuse of the concept of the autistic spectrum.

@JLwac no, a lot of people don't have autistic traits, a lot of people may have the same personality traits as those of autistic people but there is nothing exclusive about any particular personality trait. Every single person on the planet will have a spectrum of personality traits, autistic people have specific common traits that impact their daily lives.

All apples are fruit, not all fruit are apples.

Not all fruit are a appley

It has a large genetic component. Either you or your partner are likely autistic.
I do t think this is true can you link to your source @IdisagreeMrHochhauser

@5zeds it's pretty well established, Link here DS's psychiatrist told us there were at least 7 genes linked to autism.

Just because parents carry the genes doesn't mean they are autistic @Daftasabroom , although there is more likely to be autism in the family. In our case my husband and I are nt but my BiL and our younger son are autistic. Interestingly none of BiLs children are autistic although 1 son is suspected to have adhd.

Having inherited genes is not the same as a parent being likely to be autistic. Autism varies from person to person as there are so many different possible traits. A parent may just have several inherited traits that are not enough to get a diagnosis.

The reaction that I could not cope with when I told people my 11 year son diagnosis was "he doesn't look autistic"

Imagine a 100 piece jigsaw. Each piece represents a trait that can be seen in those with autism. Everybody in the world will have at least 10-20 pieces. Some will have maybe 30, some maybe even 50. An autistic person has more than 80 up to 100. You are not autistic, not even a little bit, unless you have more than 80 pieces. Sharing some traits simply means you share some traits with autistic people and some non-autistic people. It doesn’t mean you’re a bit autistic or borderline autistic.

@Porcupineintherough I didn't imply that they did, my apologies if I wasn't clear. The explanation we were given is that there were seven genes that could be inherited from the parents, so two from one, five from the other or any other combination. It was more than ten years ago now so I've no doubt the science has moved on.

@Daftasabroom i don’t think that says Either you or your partner are likely autistic. at all.

The only known cause is genetics. I'm more likely to have Autistic traits due to one of the conditions I have. (and it does run in the family)