Parents of autistic children

[BryceQuinlanTheFirst]

I'm curious about language around autism. I often see people use ASD on here, but rarely hear that in real life.

I feel uncomfortable saying ASD as though I certainly see my son as disabled, I don't see him as being "disordered". But I know many are diagnosed as this. (My son was diagnosed ASC - is this the norm now?)

A lot of autistic adults are quite adamant about being referred to as autistic not with autism or on the spectrum etc. If you've got older autistic kids, have you seen the language around this change a lot?

I studied a lot of cultural history at university and a great deal around identity, this thread is just a discussion, I'm not saying I'm right, you're wrong. Just interested to hear from other parents.

I say "he is autistic" or "he has autism", sometimes I say "diagnosed with ASD". He sometimes says "is it because I have autism?" I don't know what is correct but this is the language he and I are comfortable using.

My entire life I have described my sister as autistic or having autism. I've been told some people find it offensive when I've used expression as being severely autistic as you are of you're not autistic. My parents use the same terminology as me. I avoid using it around others as others don't like it. My father was diagnosed late as having asd and he refers to himself as an Aspey. He prefers and identifies himself like that. Not my place to say otherwise. My sister and I are in mid 30s. She'll never live independently and lives in a supported living home with other adults with various learning disabilities etc

Well ds has a dx of asd, in rl I'd say he has autism or he's autistic . On here I might put asd , it's quick to type, everyone knows what it means

Doesn't mean I think of my son as disordered

@BryceQuinlanTheFirst you can fight the system for better support and respect a community of people who are often marginalised in their choice of language surely?
The fights always seem to stem from autistic people being spoken over or told their voices aren't valid regarding their identity.

I do know my sister has a few types of diagnosis, autism, learning disability and behavioral difficulties not sure of the exact wording, so she is disabled and has autism.

But ‘the community’ isn’t one voice/opinion. The opinions and personal preference for language of all matter and one viewpoint isn’t less valid than others.

Exactly

My 10 year old daughter was diagnosed with Aspergers or High Functioning Autism this summer.

She only last week came home and told me that she told her friends at school about her diagnosis. I told her to take her time and only say what she feels comfortable with.
My daughter told me 'I told my friends today that my brain is wired in such a way that it means I have Autism but I'm still me.' That's it for me, she has Autism but she is still her iyswim.
Her condition is part of her, she is not defined by it. Her view is she HAS Aspergers, not that 'I AM Autistic.'

It is used in real life my daughter has support from asd out reach I prefer asd as I don’t like asc but In real life I just say autistic as asd is just for short on here.

And I also wonder if the obsession with identity language, is somehow detracting from the big fights that should be going on? Like why a non verbal child accesses virtually no SLT support.

I don't really think so. The language police tend to be the self diagnosed bandwagon jumpers. These people have no interest in helping or fighting for anything meaningful.

My son was diagnosed 2 years ago when he was four, coming online I’ve found the language and what words are ‘right’ or ‘wrong’ a complete minefield and there can be so much hostility in ‘supportive’ communities online.

it’s still a big learning curve I’m navigating!

@Thatsnotmycar I'm not disagreeing with an autistic individuals right to chose how they are referred to. I do get frustrated to be spoken over by neurotypical people who prefer 'with autism' even when describing me, and then proceed to tell me their experience as a parent of an autistic child means they know better - its usually then continued with 'it doesn't matter, there are bigger battles to fight'. When you live in a world that doesn't accommodate you, I find that words really do matter and being consistently told that 'there are bigger battles', chips away at any identity even further.
(I am autistic. Parent to an autistic child with situational mutism).

I was diagnosed years ago as a child, for me the language has stayed the same, I have autism is what I said then and now. Asd I'd use for shorthand on Internet forums but not in real life and I never use Neurodiverse. Maybe I'm getting old and cranky but the navel gazing language policing I find ridiculous and exhausting in equal measures. I will call someone else whatever they want but I don't need cartoons, lecturers and the like about how my way of referring to myself isn't right.

Yes I do agree with this, as I said I use the terms preferred by the autistic community I suppose it feels like many of the groups I'm in, 75% of discussions seem to centre on language rather than what can be done to better support individuals. But then given I'm not autistic, I have privilege in being able to say this

My eldest was diagnosed with "Aspergers" and ADHD. I was diagnosed with "High Functioning Autism" and ADHD. Youngest is on the pathway so don't know what her diagnosis will be, if she gets one. Both myself and eldest dd prefer to refer to ourselves as neurodiverse.

@BryceQuinlanTheFirst thank you for acknowledging this. Personally I have realised in the last few years that language (not just identity related!) plays a huge part in how I can access the world. The weeks that I have worse meltdowns, triggers often come back to ambiguous unclear language and double meaning. Unfortunate when that's the foundation of a lot of day to day English Language

as I said I use the terms preferred by the autistic community I suppose it feels like many of the groups I'm in, 75% of discussions seem to centre on language rather than what can be done to better support individuals

This is the problem though OP. Who even are these people to dictate to others how they refer to themselves or their children? Certainly not people who have any interest in making things better. These groups exist for people to mouth off and no more. They are littered with self diagnosed arseholes. If you join a group as the parent of an autistic child and the majority of discussion is about language you should probably just leave. It's not going to offer you any kind of support or give you any insight.

But unless they tell you they are NT you (not you specifically, but a general you) can’t know they don’t have ASD. I have had many assume I can’t possibly have ASD because I have a different opinion (prefer ‘with autism’) to them. As I said in my first post I have autism, I just don’t think others should try to police the language others use.

I find this discussion interesting and have read up on it quite a bit. I use autistic when talking about my 5yo DD because I see young autistic adults explaining why they use that terminology and agree with what they are saying. I have ADHD, but it's such an integral part of who I am I don't see it as something that is in addition to the person I am but as part of me, so it feels wrong saying "I have ADHD" but it's grammatically incorrect to say "I am ADHD" and that bugs me beyond words.

In ND groups I refer to DD as AuDHD as she's both autistic and ADHD, but I don't use it elsewhere because it's not really widely used elsewhere.

Two of my DC are diagnosed with ASD- one more ND than the other. I’m on the wait list to be officially assessed per referral by my psychologist of some years who is sure I am ND as well.

Thoughts. Yes I think it is a disorder. Don’t think that’s a bad word to use. Rather sick of the autism is a super power crap. No, it’s actually not a super power and it’s not really pleasant to be autistic in a NT world. So, let’s not pretend it is.

It is also a disability. Depending on how this disability affects one day to day determines whether they are disabled. So when it comes to something no physical, I think it’s illogical to take the position that person x is disabled, but has no disorder?

@Thatsnotmycar read again. I'm not policing. I'm explaining I respect the right to chose. That's what i chose for me. That's why I get annoyed when I get spoken over.
Again generally speaking.

DS is 14 and we use all 3 terms, depends who we are speaking to and the context of the conversation. In my opinion they all mean the same thing.

My sister uses neuro diverse as well as autistic about her daughter. Her daughter would not understand either term (she is 12).

I don’t need to read again, I haven’t misread. You choose to use one way, others choose to use another. Both equally valid, no one should have to change their preference for how they use language.

Same. Plus I don't mind 'with autism'.