How to talk about autistic people

[Scautish]

There are many, many threads on MN where either autistic adults are discussed in an inaccurate manner, or horrible/abusive behaviour is attributed to autism, often the now-defunct Asperger's Syndrome.

In the relationships section, it is particularly common. This is hurtful and damaging to autistic people.

The charity Autistica has recently brought out guidelines for journalists and other media content producers and I thought it might be helpful, particularly for @MNHQ who continue to allow threads which discuss autism in

the link is here, but here is an excerpt.

Talking sensitively, accurately and positively about autism in the media is crucial. Many autistic people tell us that autism is part of who they are. They want society to be aware of both the challenges and strengths associated with autism, and accept and embrace difference. This guide aims to help journalists use the right language and understand the needs of autistic interviewees.

Talking about autism
Autism is a lifelong developmental condition which changes the way people communicate and experience the world around them. Some autistic people are able to learn, live and work independently but many have learning difficulties or co-occurring health problems that require specialist support.

Getting language right
In a recent consultation, the majority of autistic people preferred the term 'autistic’. For example: ‘he is autistic’ or ‘autistic adult’. Do not use the noun e.g. ‘an autistic’.
Parents generally prefer ‘on the autism spectrum’.
Avoid the terms ‘Aspergers’ or ‘Aspie’ - these are no longer given as a diagnosis.
Use of the word 'condition' is ok, and in the right context ‘disability’, but ‘disease’ or ‘disorder’ should be avoided.
Don’t use ‘mild/severe autism’ or ‘high/low functioning’, instead say ‘autistic' or autistic and has a learning disability’
Say that someone speaks few or no words, it's preferred over the term ‘non-verbal’
Don’t use negative language like ‘suffering from’ or ‘paralysed by autism’. It may be appropriate to use this language when talking about other difficulties such as ‘struggling with anxiety’.
Do talk about autistic people's strengths.
Talk about how research can improve lives, not fix problems.

I wonder - does an autistic person only become autistic when they are diagnosed? What are they before that?

I've wondered that Haffiana.

If you’re both wondering that then clearly your fairly ill educated with regards to autism as it’s a life king condition that exists from cradle to grave. A diagnosis doesn’t create an autistic person.

But I have a feeling you both knew that. And your statements are made to promote the validity of a spousal/partner amateur diagnosis?

So they're right?

The very nature of the relationships board is that the majority of things discussed are going to be negative so you are not going to get a balanced view of autistic people or behaviours attributed to autism in the same way that if you only read the relationship board you would think all men are cheaters and not have a balanced view of men.

It is ironic that you are telling everyone how to talk about aspies and autistic folk in a very specific way when in fact we are actually all individuals with our own preferences and we ourselves are not constrained by the definitions that you have quoted from Autistica.
I say this kindly and without patronising you but I suspect your own autism has with the best of intentions caused you to push these narrow definitions on all reading your post without realising how you are coming across. ie you must do it this way

I appreciate you and presumably Autistica are doing it to try improve the sometimes bad press that aspies and folk with autism get but your post is the equvalent of a man coming into the relationship board and quoting lots of studies to say that the majority of men are all actually quite nice and we shouldnt always "leave the bastard". Most people know that, its just that no-one really posts about the nice things.

You're talking like Autistica is some sort of higher authority, Ive never even heard of Autistica so they certainly aren't the be all and end all of how to to talk about autistic people and they certainly don't get to choose how i talk about myself.

You have said that many horrible behaviours are attributed to autism and seem to suggest that its inacurate and unfair and whilst yes it can sometimes be frustating , the truth of the matter is people with autism/aspergers do indeed hurt people and behave badly by the very nature of how their autism presents by being narrow minded, truthful to the point of hurtfulness, not acknowledging feelings, and so on and so on and no , of course not all people with autism behave like that but the truth is many do and it causes hurt and confusion to their loved ones and these are the kind of things that are posted in the relationship board. Your post is suggesting we sweep that all under the carpet and pretend these issues don't exist.

Straycat = an aspie individual who can call herself whatever she likes.

Straycat. You maverick. Refer to yourself however the fuck you like. If you think I was trying to tell autistic people how to refer to themselves then you have spectacularly missed the point.

I just wish that on MN, autism was recognised as something that (1) isn’t easy to diagnose and ((2) isn’t acceptable to denigrate and (3) has a “significant impairment” on a persons s life event if they’re “high functioning”. I also wish that MN recognise their responsibility too.

Anyway, I’m out. Didn’t want to pick a fight with other Aspies*. I apologise. Never starting a thread after drinking again.

*irony intended

Yes, language is powerful and we have to recognise its impact on shaping and maintaining societal beliefs...but it's also a deeply personal thing, and when it comes to autism, there are so many urgent battles to be fought (e.g. abuse/neglect in institutions, underfunding of health and social care services) that I often feel so so deflated that so much energy is spent fighting about a couple of language terms, none of which are offensive in and of themselves.

Is autistic/has autism/is on the spectrum/has aspergers...none of these terms are offensive, and people prefer different terms. So I respect people's choices, both autistic people, and parents whose children are profoundly disabled and cannot express their own preferences.

I describe myself as an autistic person, because for me autism is so fundamental to who I am, there is no other way to put it. That doesn't mean it isn't disabling - I am disabled because I am autistic. Just that autism is an intrinsic part of my nature, my personality, the way I think, the way I perceive the world. It's part of my being, and therefore for me the verb that fits is 'to be', not 'to have'. I have another disability which I developed as a young adult, which isn't an intrinsic part of me, and I could be separated from it without becoming a different person. Therefore that is something I 'have'.

I understand and respect why others prefer 'has autism', and I will always use people's preferred terminology when talking about them or about their child. And when people are talking in general terms, I also don't care which term is used. I use 'autistic people' when talking in general terms, because it's the term the majority of autistic adults prefer.

HOWEVER, when (occasionally) I call myself an autistic adult, and a NT person tells me that no, you are a person with autism because we have to put the person first...well, that's definitely ableism. You can protest that you are about valuing the person, but if you truly value people and view them as human beings with intrinsic worth, then you would respect their choice of language when it comes to describing themself/their disability. Talking over disabled people and feeling that you have the right to choose their own language for them, means that for all your good intentions, you have internalised ableist beliefs and aren't recognising or challenging them.

I don't like all these rules about how we have to talk about certain groups of people. Beyond 'do to others as you would be done by' i think it's controlling flannel.

My son is autistic - I've never in all my life heard someone described as "an autistic". It's better for people to feel they can just talk honestly anyway - that's what many autistic people do far better than the rest of us !

Yeah I totally missed the point of the thread I think, and just got really absorbed writing an essay on one minor point. Oops...I blame autism

It's completely possible for someone's behaviour to be very related to autism, and that same behaviour to be harmful to their spouse/partner. I would hope the relationships board would be a place where they could discuss and get support for this.

My DD and I refer to ourselves as Aspies. The diagnosis we were given was Asperger syndrome, nearly 20 years ago.
DD often sings “If you’re Aspie and you know it, flap your hands”, (to the tune of “If you’re happy and you know it, clap your hands”), because flapping is one of the stims that she uses to calm herself!
I don’t think there is any need to dictate the language we use about ourselves. I’m happy to describe myself as either autistic or an Aspie. It’s a big part of who I am, as it is for DD too. We both have professional careers and high IQs, and our atypical way of processing the world hasn’t held us back.
If you are neurotypical, and want to see things through Aspie eyes, buy the hilarious book called “Why Johnny doesn’t flap”.
It neatly turns the tables by portraying a world where we Aspies are the majority, and non autistics are seen as developmentally abnormal. There are some very funny parodies of the earnest and patronising acceptance shown to us in real life!

What happened to Autist? A few years ago that was something people preferred to be called

I'll always refer to a person however they prefer . As for my son who is too young as yet to know I use is autistic/has a dx of asd. As long as people aren't being rude I wouldn't take offence

Pre verbal/non verbal we used both . Pre verbal more when he started saying the odd word

Being autistic can certainly be disabling for him at times and yes he's also suffered occasionally because of it, as have we

This is a joke.

My child has autism. It has controlled our life for the last 9 years. Endless appointments and meetings. You discuss them the way you discuss normal people. I will say she has autism, I will describe children as mild to severe, I will say non verbal. I won’t be changing any of that because some survey says so.

Come back sober 👍🏻

And the majority of adults I know refer to themselves as aspies

Scautish
Straycat. You maverick. Refer to yourself however the fuck you like. If you think I was trying to tell autistic people how to refer to themselves then you have spectacularly missed the point.
I just wish that on MN, autism was recognised as something that (1) isn’t easy to diagnose and ((2) isn’t acceptable to denigrate and (3) has a “significant impairment” on a persons s life event if they’re “high functioning”. I also wish that MN recognise their responsibility too.
Anyway, I’m out. Didn’t want to pick a fight with other Aspies. I apologise. Never starting a thread after drinking again.
irony intended

So, basically if I dare to disagree with you, you swear at me, throw all your toys out the pram , blame the drink and leave the thread acting like a victim ? Catastrophizing much.
But yet you want people in the relationship board not to attribute horrible behaviour to autism because its hurtful and damaging to autistic people ? Perhaps some self reflection is in order.

Perhaps i "spectacularly missed the point" because you didn't explain it very well if at all in your opening post or are you suggesting that only neurotypicals talk negatively about the difficulties of relationships with autistic people because I can assure you autistic people also talk negatively about the difficulties of their relationships with their autistic partners and family members and use multiple terms to describe their autistic family members. .

I have a severely autistic adult son. He's totally non verbal, double incontinent and still in nappies, violent, self harms constantly, will never have a wife, sex, children, an alcoholic drink, he can't tell us if he's in pain, he doesn't know his name or what Christmas or his birthday is - he needs 2/1 care 24 hours a day. He lives in a state of permanent anxiety. I know 3 other people who have autism and you would never, ever know it, they know it and I'm sure it causes them problems - BUT what they have and what my son has, are totally different things. Yet on paper they're both autistic.

It's bonkers.

Never mind Asperger being shelved, don't get me started on that.

You're stomping your feet and demanding that people don't do what you're demanding they do.

You don't have that right.

Sea horse - I think what my daughter has (just been diagnosed as autism) is so so different from what you're experiencing as to be incomparable. And I'm so confused as to the language around it as it seems all the language I want to use isnt "correct." Yet it would seem ridiculous for you and I to talk of our children in the same way or for me not to acknowledge how profoundly lifechanging your experience is. Im considering whether as my daughter has autism I might as we are very similar and would explain a lot of where I have struggled as an adult. But the v fact I can get to 40 and think this is so so different to a child with severe disabilities. It is like they are 2 different things.

I just dont want to offend anyone 😳

I think autist has gone out of favour as it has become more of a derogatory term e.g. "the 4chan autists"

This post is daft, we are all individuals...its not hard to ask someone how they preferred to be addressed rather dictating how they should be addressed. I prefer just my name. If I am discussing my diagnosis I state 'I have a diagnosis of ASD', because I personally feel its important to acknowledge that that autism is on a spectrum and I have no right to claim the word autistic as though how I present is typical of autism because it isn't, every single person with a diagnosis presents differently.
I guess our experiences contribute to how we prefer to describe ourselves, I am an adult social worker, I work specifically with adults with a diagnosis of ASD right across the spectrum.

Autism is a spectrum and so varied. Calling someone autistic is like calling someone lgbtqia+ when they’re gay - in my RL experience it’s kinder to be accurate or describe specific symptoms. In my experience those parents with kids who have severe autism really don’t have it the same as those who have milder forms.

I definitely think there is a need to explain that just because some bloke behaves like a twat doesn't mean that they are autistic.

There does seem to be twattishness=autism vibe on MN.

...One can be a twat without being autistic
One can be autistic and not a twat
One can be both autistic and a twat.

After all we all do.some twattish things occasionally.

I brother has Asbergers (defunct?!) and the rest of us have mid range signs of autism but not diagnosed. The thing that's wrong nowadays is this sort of a thread where people try to be politically correct and tell other people what to say and how to say it instead of letting people blunder on and then helping them say it if it pertains to that situation. I have been to talks and met people with autism and asbergers and they're all different, the way anybody else is!

please can people stop perpetuating the myth that the autism spectrum is linear?
It's not. Everyone with autism will present differently and have different strengths and weaknesses. Also, those who appear "mild" are only mild..
To you.
You have no idea how hard they are working to copy and mimic NT behaviours.

Because most of the “autistic” adults to whom they are referring do not have a diagnosis

A very large user-base of this forum actually do have Autism and / or children with autism.