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.

Have only read the OP but feel compelled to reply... Get stuffed with your language policing, which is effectively the same as thought policing. My father abused me terribly when I was child, and it was only as an adult that I realised it was a direct result of his Aspergers - he was neurological incapable of understanding and meeting my needs. This realisation has allowed me to forgive and heal, but the scars will always remain. I am absolutely not saying that all people on the autistic spectrum are bad parents, but I resent being told to only discuss autism in a positive light when my experience of it was deeply damaging.

My brother has aspergers and refers to himself as an aspie, even his email address incorporates the word aspie. He,also has a T shirt with 'I had aspergers before it was trendy. ' I think the key here is for the individual to choose. We all have our quirks. My brother has his, you can't define people by a label, there are good & bad no matter where you are on the spectrum. We (brothers friends & I)now have a book of sayings that my brother has come out with.
We all laugh together, bro included.

I think many have missed the point of this thread OP. I totally agree that twatish/abusive behaviour is often cited here as being caused by undiagnosed ASD. I think that not only is that label dangerous for the woman posting (as they will be much more likely to tolerate abusive behaviour out of guilt) but also very offensive to people with ASD. As another PP said, you can be abusive AND have ASD and abusive behaviour does not equal autism.

My 13 year old DS has ASD and is a sweet and gentle soul. Yes he can have meltdowns and can be selfish and lazy at times but there is no malice or intent in his actions. My father on the other hand is what my mum describes as an Aspie but undiagnosed and has never sought a diagnosis. He was very emotionally abusive but I grew up having to make allowances for his "Aspergers" when really I feel it was his responsibility as a parent and partner to seek help (and a diagnosis) if he really does have it. IMO he probably does have ASD but he's also a huge arsehole and unwilling to change which is not a trait of people with ASD (if anything, they are more willing to apologise and stop certain behaviours when told they are upsetting to others).

There are some major problems when trying to talk about your relationship with a man with ASD here. My husband is diagnosed with ASD and some of his behaviours due to ASD can be construed as abusive. For instance he stonewalls me whenever I try and have a conversation about anything relating to how I feel in our relationship. His meltdowns can also be incredibly scary sometimes.

If I try and speak about it here I am told by people with ASD that it's not because of his ASD, that being abusive is nothing to do with ASD, that I am wrong, when I know my husband and have been with him 16yrs, we have spoken about what happens in his mind when he is stonewalling me, he agrees it is due to his ASD. It feels like gaslighting from the posters here that jump on any thread in relationships with the words 'my husband has aspergers/autism/ASD.'

When I talk about my husband I am just talking about him, about the challenges he faces and we as a couple face, I am not talking about everyone with ASD or the posters who take offence whenever ASD and husband are in the same sentence or even my son who also has ASD and faces different challenges to my husband. No matter how many times you say that though you are still told you are being offensive, you are upsetting posters with ASD, that what you know to be true isn't, as a result I know I and other posters here just don't seek support here anymore.

I'm feeling anxious about even posting this in case I am jumped on for phrasing something wrong or offending someone when that isn't my intention at all.

I am genuinely sorry for the offense I've caused. Drinking on an empty stomach was not a good idea last night, I'm paying for that today.

My OP should have been clearer. These are guidelines suggested by Autistica and as stated on the link "For journalists and other media content producers"

So I was not, at all, trying dictate/order any autistic person, or carer/relative of an autistic person how they should refer to themselves. I am genuinely sorry that my OP was not worded better.

It was a clumsy effort to

(i) highlight to MN that there are (autistic-led) guidelines around how autism should be discussed such as not referring to high-functioning or mild autism as this is not accurate nor helpful.

(ii) bring to attention (hence in relationships) the issue of people constantly attributing poor behaviour to autism (and this happens on a daily basis on this forum)

What I was not trying to do was

(1) try to assert myself as the authority/dictator on terminology
(2) say people are wrong if they say being in a relationship with an autistic person is difficult. I am aware we have characteristics that can make a relationship challenging.

I don't express myself well at the best of times. Add alcohol into the mix and it's....well...see above.

Sorry.

My DB is severely autistic and does not speak. I'm also a HCP and frequently encounter patients on the autistic spectrum. We still frequently use 'non-verbal' because it quickly communicates how disabled my DB is. He has never been diagnosed with LD so we've never said autism with a LD - this term wouldn't convey immediately that he cannot speak.

I understand the dislike of 'high functioning' because people often hear savant/exceptional functioning and this must be tiresome. Aspergers is a pretty helpful way of conveying what is meant by high functioning, I suppose.

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.

The fact that they have the ability to mask at all is surely evidence that their autism is more “mild” than a person who’s never mimicked anything in their lives though.

I have two autistic children. They can’t mimic. They can’t copy. They can’t mask. They can’t speak or understand words.

Their experience of ASD is not the same as someone who can, with great effort and at great personal cost, appear to only be “mildly affected”.

I don’t want to be told I’m “high functioning” or that I have “mild autism” as that’s so fucking misleading and unhelpful

Aspergers is a pretty helpful way of conveying what is meant by high functioning, I suppose.

Aspergers IS NOT a good way of saying high functioning because while ALL autistics who are aspergic ARE high functioning, all high functioning autistics are not aspergic. I understand OPs and other posters frustration but I wonder if they can understand the frustration of those that benefit from those descriptors hearing again and again how awful it is for them to be used? Much of the problem comes from a misunderstanding (I am beginning to think sometimes wilful misunderstanding) of what HF means. It DOESN’T mean you can pass for nt and you don’t need much help. It means you have an IQ over 80. That may not be something you want to highlight if you are obviously bright and able but I can assure you if you aren’t, if perhaps you can’t communicate verbally, or sensory disorder causes you to stim alarmingly, or any number of presentations that might make people think you have a very low IQ it matters. It matters quite a lot.

There is no question that some parts of the spectrum experience milder impact from their autism. Severe/moderate/etc are the words used to give an overview. They’re not used just for autism but for all sorts of conditions. Personally I find them too wish washy and undefined but not unhelpful.

As far as the “correct” language, I find being told how to talk about things irritating.

The fact that they have the ability to mask at all is surely evidence that their autism is more “mild” than a person who’s never mimicked anything in their lives though. this is very well put, and I agree.

I have a son with a diagnosis of Aspergers. It may have been removed from the DSM but it's not "defunct". I also can't see any issue with the term non-verbal or Aspie if that's what the person orders to use.

I hate all this control if speech. Obviously there are teens which are blatantly offensive and should be avoided but this is too much.

People are going to be afraid to say anything at all soon

@Seahorseshoe Our son is 10 and I think he's going to grow up like your son. I describe our son as 'severely autistic' because it's a very quick way of summarising the depth of his condition and the impact it has on our lives. The only bright side to the severity is that he has no idea of his difficulties.

I think high/ low functioning is often relevant, especially on here. It's no use posters asking for advice and receiving a load of responses that are completely irrelevant. Even as a third party, if I was asking for advice on eg how to make a bday party accessible for my friends ds, compared one of my colleagues, the helpful advice would need to be completely different as they have very different needs/ difficulties that are nothing to do with their ages.

Again I'm not sure the specific language is the point. If, for example I say 'my friends dh is a right knob so I think he must be autistic. And even so, that's not an excuse he needs to learn' it won't matter how I phrase my armchair dx, it would still be an ignorant and twattish thing to think.

By comparison I could say 'My friends dh is autism, and gets flappy and makes weird sounds if it's too noisy. Apart from offering a quiet escape room, how else can I make sure he can enjoy my big party?' In which case yes, there might need to be some gentle correction of the exact phrasing, but the sentiment would be the important part.

My son (age 7) is only recently diagnosed but I do find myself saying, when it's relevant (at school, for example) that he is high functioning, or even 'mild'. He also has atypical presentation so his ASD manifests itself very differently, and I just want to use normal everyday words to describe as best I can his lived experience. It feels like a proper minefield.

My ds & nephew are both autistic, but couldnt be further apart, that is which Autism is a spectrum, two people could both have a diagnosis of Autism but be a million miles in terms of ability apart. The terminology for autism has been changed & many people who were diagnosed when the old terminology was current find the new term feels wrong. I am going for the final session of a diagnosis next week & I really don't know how I will consider myself if I get a positive diagnosis, let each person use whichever terms they feel comfortable with & adapt your own to suit them.

Do you know, people telling me I should always talk about autism in a positive way can get in the fucking sea

My son is very severely affected by his autism. It’s not a positive or an interesting asset to him or part of him or anything other than a fucking nightmare

Thanks

Please don't talk about us. It's worse even than being looked at.

Sometimes we have to talk about autistic people and about autism. My children need me to talk about them, and for them. I have no idea what language they would prefer since they don’t know what autism is, what people are, that they are people... they have no concept of any of this.

And I would try to avoid ever using the term mild about a specific person - I don’t know their situation. However, if I ever did use it, it wouldn’t be to trivialise someone else’s experiences but because there’s a need at times to differentiate between my children’s difficulties and those of others.

I am tired of being told I should look at my childrens’ disabilities as positive differences, by people for whom that is the case, simply because their overall diagnosis is the same. If my sons’ exact delays and difficulties were attributable to any other diagnosis, no one would be chastising me for describing them as disabled.

The fact that they have the ability to mask at all is surely evidence that their autism is more “mild” than a person who’s never mimicked anything in their lives though

Not necessarily. It just means that their specific difficulties don't include mimicking social interactions. They may be more severely affected in other ways.
Having a linear spectrum from "very mild" to "very severe" isn't helpful because no one knows exactly what difficulties someone with autism has and which areas are their strengths and weaknesses.
You wouldn't say someone was "mildly neurotypical" because they were a bit eccentric, nor would you call someone "severely neurotypical" because they were the most boring, most ordinary person you had met. Both these people would be NT, but would have different strengths and weaknesses and placing them on a linear scale is not helpful.

Moderate and severe can describe areas or volume as easily as a section of a line. Having descriptors like moderate or severe are useful if they are well described.

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

That made me laugh. That's how I'm known at home when I do anything 'unusual', but I haven't heard anyone else say it for years. Most people seem to refer to themselves as Aspie but I suppose the best way forward is to ask individuals how they'd like to be labelled (if at all) rather than trying to force the issue.

Can I start a thread entitled 'How to talk about NT people'?

Having a linear spectrum from "very mild" to "very severe" isn't helpful because no one knows exactly what difficulties someone with autism has and which areas are their strengths and weaknesses.

I agree. But each of the areas involved in the triad of impairments does vary from a mild to a severe impairment and it’s utterly unhelpful to have one term that covers such a wide range of difficulties.

I’m certain there are autistic people whose more severe impairments are masked by milder impairments in other areas. But overall when you have children who are severely impacted across the board, it’s ridiculous that you cannot say so.

One of my sons’ impairments are milder than the other’s. That’s just a fact. I’m not trivialising his needs, or criticising the other.

I am autistic and I don’t consider myself disabled. I am “different” but not unhappy about it. I have a senior job, manage both projects and teams, look after my daughter and generally have a great life. However social communication confuses me, I need routine, I cannot do things I find boring ... I’m happy with Aspie, high functioning or just plain “weird!”

My niece is autistic and has ADHD. My daughter is not “normal” although she has no clear diagnosis.

It’s hard to get the wording correct. I don’t think it’s easy to say what is the right way to refer to those on the spectrum!

I think to be autistic the condition has to be disabling.

5 so what are autistic people that don't feel disabled?

I think to be autistic the condition has to be disabling.

What on earth do you mean? I'm autisic but don't feel remotely disabled by it (quite the opposite in fact!).

My understanding was that the impact of the condition had to be disabling to fit the criteria. I haven’t read it for years though so I might be wrong.

5 so what are autistic people that don't feel disabled?
Autistic people who don’t feel disabled, I’d imagine.