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 think the term 'autistic' has come full circle and is now 'okay' to use, when I first started in education it was 'person with autism'

I use ASC (when necessary) not ASD , as I agree, the word disorder is unpleasant.

When son was diagnosed it was 'child with autism', I've only recently found out 'autistic child' is preferable and 'aspies kids', which is how his designated provision referred to them, is an absolute no-no.

I would say both 'he is autistic ' and 'he has autism'. I'd never say asd, most people don't know what that is or will confuse with add/adhd.

On a language front it is 'person of colour' not 'coloured person' so the complete opposite.

I feel uncomfortable saying ASD as though I certainly see my son as disabled

Well D is disorder, not disabled, but in order to satisfy the criteria for a diagnosis of autism you also along side that will 'fit' the definition of disabled. I'm hopeful someone will come along who can explain this as I'm not so good at it, I really struggle but the point is it doesn't matter how you 'see' your child, they legally fit the definition of disabled.

As the parent of autistic children, and an autistic person myself. I don't give a fuck of people say 'autistic' or 'has autism' or whatever, but I do care that other parents of autistic children don't try to minimise autism to suit their own need. It's not particularly helpful to pretend, not for me because I want people to understand I need adjustments and accommodations, and for you, your child may need this too themselves one day.

And the whole debate about Autism and being a disability ! Rant over!

I prefer autistic but ASD is ok. I hate ASC as autism is a medical disorder, not condition, they mean different things. Disorder: A disruption of regular structure or functions in the body or a part of the body. Condition: An abnormal state of health that interferes with the usual activities or feeling of wellbeing. My children and I are not unhealthy or abnormal but are brains are structured and function differently from the norm.

I use either “he is autistic” or “he has autism” for my son. Don’t have a problem with either, nor a preference.
I don’t think I’ve ever said ASD irl.

My son is 14, he says he has autism or he is autistic. His diagnosis is ASD - Asperger's Syndrome but that apparently isn't used anymore. He still uses Aspie though.

That it's now just a blanket term for all autism... I do wonder whether this will change again to reflect the challenges individuals have since its no longer in use to apply functioning labels.

Agreed, I loathe it when someone comes on a thread and tells people off because 'we don't say that now'. There was one who did that and then put up a meme that said 'some people don't like you to say xxx - but you should always ask the individual what language they are comfortable with'. The poster completely missed the second half of the meme!! It fucks me off that you're 'not allowed' to say high functioning on here and that there's no Aspergers syndrome now. My son has AS and is high functioning compared to many with ASD so please fuck off telling me I can't say that.

Oh and I wouldn't say ASD in real life, I'd just say he's autistic or has aspergers. But it's much quicker when typing to say ASD and more recognised (IMO) than ASC. I think disorder has more negative connotations than condition so I can understand why some might not like it so much even if it is medically correct. That's why everyone should be able to use the words they are most comfortable with - but need to accept that others equally may be more comfortable with other language for their own reasons.

I always refer to my young adult son as being autistic but I know more and more newly diagnosed families proffering to use the term neurodiverse when explaining their child's diagnosis

My Ds.. teen uses both

He doesn't seem bothered either way..so i don't question it.

I used Asd when ds went for covid booster.. nurse was completely unaware of the term..

I think people of colour is no longer in use either! DH would never refer to himself as this, he would say a black man.

But with downs syndrome we say with, not a DS child.

It is very hard to keep up with current terms

I have a 16 year, he would say himself either ‘I’m autistic’ or ‘I have autism’

I use either when talking about him. Only use ASD when writing down. Never use ASC.

This is the graphic I always see posted in autism groups

I am parent of and autistic myself, or rather I generally use neurodivergent as I have multiple conditions. I also say I am disabled. At the end of the day, disabled isn't a bad word, I look at it from the social model as opposed to medical model. The world around me is not designed for me therefore I am disabled by my surroundings, peoples stereotyping, attitudes and society. My conditions don't disable me, our world not thinking about accessibility and inclusion disables me.

See I dislike neurodiverse or neurodivergent because every other person on TikTok says they are. The vast majority undiagnosed with anything, It’s become meaningless.

Stay out of the groups. Who are these people? Not anyone qualified to tell anyone else how to refer to themselves. Fuck that.

@piegone

I think either I've misunderstood you or you've misunderstood me. I agree my son is disabled but that isn't a negative word. But I prefer not to refer to him as having a disorder which is the d in ASD. What I mean is, I'm certainly not minimising his challenges, he has high care needs across all areas of his life but so many of these are made hard because of how society excerpts him to behave. Because they want him to pretend a stuffed animal is real, when he would like to collect and arrange them. (Obviously a trivial example)

Expects * sorry long week

I use whatever works at the time. In the scheme of all the shit I have to worry about in life I just haven't got the energy to be offended at what anyone else does. Non-verbal, ASD/autistic/with autism son with significant support needs.

Sorry I did misread you.

As the definition of disorder is ”an illness or condition that disrupts normal physical or mental functions” I don’t see the point in the change to ASC. To be diagnosed one must have “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” which “limit and impair everyday functioning”.

If the difficulties “limit and impair everyday functioning”, which they must do in order to be diagnosed, they do “disrupt normal physical or mental functions”. Therefore if autism is classified as a ‘condition’ and the threshold for diagnosis is difficulties with the triad of impairments that “limit and impair everyday functioning” which “disrupt normal physical or mental functions” then the ‘condition’ is also a ‘disorder’.

Language is a personal choice some people prefer “with autism” others “autistic”. Both should be equally valid, and no-one should try to police other people’s language, especially other people with autism/autistic people (delete as appropriate depending on which you prefer).

In the legal sense of the word autism is classed as disability as the Equality Act "defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities” (S6(1)). assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/570382/Equality_Act_2010-disability_definition.pdf#page9

Obviously individual ND people can choose not to use the term or think of themselves as disabled. Personally, I see myself as disabled by my ASD, as does 1 of my DC. The other doesn’t, although does think her autism makes life harder than it otherwise would be.

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'm autistic. I certainly don't have autism as that presents it that it is something additional and not at the centre of everything about me. I wish I could leave it at home sometimes.
I also despise functioning labels - high functioning to me describes a day where I'm able to 'pass' as neurotypical enough to fit in and not make any actual neurotypical people uncomfortable by dropping the mask and being myself.