Autism. Friends ignorant comments.

[KellyB154]

I have a friend of 8 years. She's a nice person in general.

Two years ago my 4yo was diagnosed with autism.

When I told her about the diagnosis she was surprised and said "oh he doesn't look autistic"

I thought it was a bit of a daft thing to say but didn't let it bother me, sometimes people don't know the right thing to say and all that.

So FF to yesterday we were chatting about coronation and I mentioned that I really like Roy, and did she know that his character is based on somebody with autism.

Her response "Oh really, yeah he's always been really strange hasn't he"

I was taken aback and just replied that no he's not strange, he's supposed to be autistic.

That annoyed me and brought the first comment back to mind, and I've got a bee in my bonnet now. I'm sick of the ignorance autistic people have to put up with.

AIB too sensitive?

I'll admit I felt pretty offended

Autistic people are not weird.

Autistic people are not 'high or low functioning' - it is a spectrum, everyone has a different profile of strengths and challenges.

There is literally no such thing as looking autistic, unless you are looking inside someone's brain.

There is so so so much information from Autistic adults & advocates. So much information on what it means to be neurodivergent & how we can be inclusive/neurodiversity affirming in our attitudes and in society.

If you don't want to learn about it fair enough but I don't get why people feel the need to share nonsense opinions about topics that are obviously important to a lot of people and their lived experience.

But Roy's character is a bit strange? That's just a factual observation.

Aside from whether Roy is based on an autistic person or not, his character is quite a long way from a typical bloke, and I think that's deliberate. Doesn't really matter what the reason is.

Also, autistic people are often perceived as strange. I'm autistic. I get on with people really well. I can be vibrant and fun. But also I can be bloody strange. I have absolutely no qualms celebrating my weirdness. My DC are autistic too. We are a house full of people who are wonderfully and unapologetically unique.

Autistic people think differently. We communicate differently. We may speak differently. We may even seek out different types of relationship, or be attracted to unusual interests or subjects.

We also might hide it very well and you'll see none of what's really going on.

We don't share a single personality, but we're more likely to be described as strange because we don't fit the neurotypical profile that people are more used to seeing. Personally speaking, and this is just one autistic person giving her opinion, I don't mind if people think I'm a bit strange. A lot depends on the tone of voice and the way they say it. You can call someone strange and mean it in a spiteful/nasty way, or you could call someone strange in an affectionate/contemplative way and mean absolutely no offence.

I think context is everything.

Actually, just to add, I need to watch it again but I saw a documentary the other night where they were talking about stalkers, and one of them was autistic. And there were such sweeping generalisations about "autistic people" that did feel a bit offensive - as if we all have the propensity to start some crazed stalking at the drop of a hat. That one left me feeling a bit uncomfortable.

Also, when people talk about a child not looking autistic, I always think of this tweet. The first time I read it I nearly cried with laughter.

Of course people should know not to be so ignorant. But here we are.

@Ionlydomassiveones I wouldn't expect everyone to be well informed. There are many things I know very little about but I think I can gauge when it is a topic that I might hold back on discussing without learning about it first. It gets to me, the whole 'I don't know better' - show some tact, admit you don't know much about it. That's fine. Just think before you speak.

Autistic people are not 'high or low functioning' - it is a spectrum, everyone has a different profile of strengths and challenges.
Of course autistic people are either high or low functioning.

Exactly what came to my mind @SpidersAreShitheads 😁

@5zeds

Just google it, I'm out of patience

Or you could?

High functioning iq over 80, low functioning iq under. NOTHING to do with “where you are on the spectrum” nor an indication of how well you pass for neurotypical.

*Also, autistic people are often perceived as strange. I'm autistic. I get on with people really well. I can be vibrant and fun. But also I can be bloody strange. I have absolutely no qualms celebrating my weirdness. My DC are autistic too. We are a house full of people who are wonderfully and unapologetically unique.
*
❤️

Tbh I don't usually think of weird as an insult, just got defensive 😂

Unique is better though!

@5zeds Autistic people are NOT low or high functioning - that's an extremely out of date way of labelling things which has been proven to be unhelpful and inaccurate.

The functionality of an autistic person can vary due a wide-ranging set of circumstances. This graphic explains it more than I could, but please do google it if you want to understand why low/high functioning is now considered to be such an unhelpful description.

Functioning labels aren't the same as an intellectual disability.

Here is a handy table for you @5zeds

I've always felt that the removal of Aspergers complicated the high/ low functioning as you can absolutely have an I
IQ over 80 and be fully dependent for example (I know that's exactly the point both PPs were making).

My son will realistically have more in common (needs wise) with a NT person with anxiety than a person with ASD who will be dependent on care for life, non verbal etc

@thehighsandthelows

I love that tweet about "doing an autism" - absolutely cracks me up to this day 😅

My DC like to say to me "mummy, you're so weird" and I say "thank you", and they laugh. It's like a little daft ritual we've had for years ❤️

Ooh, that graph is a lot better than the one I've seen floating around which was as clear as much even when you knew what it meant and agreed with it.

Clear as muck

@CheshireChat

I've always felt that the removal of Aspergers complicated the high/ low functioning as you can absolutely have an I IQ over 80 and be fully dependent for example (I know that's exactly the point both PPs were making).

My son will realistically have more in common (needs wise) with a NT person with anxiety than a person with ASD who will be dependent on care for life, non verbal etc

@CheshireChat

Absolutely agree with you completely. I think the removal of the Asperger's label was supposed to be more inclusive but it's left our community without any helpful language to describe a particular type of autistic presentation.

If there's no intellectual disability, it's really hard to describe the needs of an individual in a way that's meaningful yet succinct.

My DD sounds like your child Cheshire, but my DS has much higher care needs, despite being verbal and bright.

And some auristic people are unable to function in any way but I can't be borhered to explain that either it's unhelpful .

Autistic*I'm also

@SpidersAreShitheads which has been proven to be unhelpful and inaccurate. has it? By whom and how? I can see if it is used inaccurately to describe how well you pass for neurotypical, then it has limited use but knowing someone who presents as having a low IQ has a high one is fairly key to appropriate support is it not?

@thehighsandthelows quite hard to read but is it supposed to be a put down to keep me in my place (I rather wonder what you think that is?). I understand you mean to be rude but there’s really no need. We are disagreeing about terminology.

I disagree with most pp. I think she was being an ignorant twat. I have different experiences, my sister has schizophrenia and I know she’s “strange” but I don’t need any of my friends making comments about people with schizophrenia being odd, given they know the whole history of what she’s had to deal with and how difficult it has been to support her as a family. I know it’s a completely different condition to autism but the principle stands.

I think the current ASD spectrum is far too varied to be of much use to anyone.

My DS and Spider's DD by the sound of it have some needs, then there's children like 2boys' if memory serves, who is far more severely impaired (for lack of a better word) and has completely different needs. And services tend to have a one size fits none approach which means everyone is being failed one way or the other.

Why don't you just read it and digest it instead of taking offence. Yes we are disagreeing about terminology - terminology is important. I'm not here to piss anyone off but I'm not here to tiptoe around fragile feelings either. I'm also tired so going to bed now. Seeya.

It's not linked to IQ though @5zeds - and that's the issue.

An intellectual disability doesn't have to be present in someone whose functioning is severely impacted. And that's why the label is unhelpful - it implies that if you have a high IQ you can function more or less at a "normal" level. And that might be true on some days but on other days, if you're overwhelmed you might not be capable of speech, or to leave the house, or even get out of your bed. You might not be able to pick up the phone. Or send a message. Or shower. Or eat. Yet you are "high functioning" because you don't have an intellectual disability. Do you see how the functioning labels are unhelpful and why they're no longer used?

The problem is which you're inadvertently touching on here is that we don't have a good mechanism for describing autism well, in a way that's instantly meaningful.

Functioning labels have been traditionally used to imply that someone is either permanently at one end of the linear diagnosis, or the other. And as the graph I showed before demonstrates, in many cases, the true functional ability of an autistic person can fluctuate wildly.

The use of functioning labels doesn't account for the fact that some days an autistic person may not be able to do something they were able to do the day before. And it adds to the misconceptions - people don't generally understand how functioning levels can be so different on different days. But that's how our brains work. We can overloaded and overstimulated very easily and we shut down, unable to do the most basic self care tasks which would technically mean we are "low functioning". Except that on another day I might be able to go into work and present to a board of directors, and do all the things that a high functioning person would do. This is why functioning labels don't work. Our neurodivergence means that we don't operate or function at a single static level, or even within a narrow band of functionality.

There are lots of studies online going back quite a few years which reference all of this. This isn't a new thing. And I'm not meaning to be rude but it's all out there - take a look.