AIBU to not like the term 'on the spectrum' to mean autistic/has autism

[UndertheCedartree]

It really bugs me! Lots of conditions have spectrums so you could be talking about anything. It's so imprecise.

Also, I think it perpetuates the myth that there is one spectrum and everyone is on it somewhere so everyone is autistic to a greater or lesser extent.

I must admit I don't know much about Simon Baron-Cohen but was he the one that said autism is extreme maleness? I couldn't feel further away than from maleness, personally! 😂

Yep. He's wrong about most things, really, because the majority of his findings didn't involve actually asking autistic adults what their experience was - essentially, it seems like he's always started from the assumption that autistic people have limited agency (at least, from the parts of his work I've seen/read).

Ironically, the evidence for his hypothesis about Newton and Einstein was actually pretty compelling.

The spectrum makes perfect sense if you look at it. It makes sense how people are different in different areas. And no one is the same.

Cancer can range from squamous cell or Basel cell carcinoma to a full blown neoplast, malignant or metastatic - from the "nothing to worry about" to the " you are not likely to be here in 6 months"

@UndertheCedartree thank you.

It makes perfect sense if you already understand it. Most people who use the term "on the spectrum" as a euphemism are just doing so out of ignorance in order to avoid the word "autistic", and have no idea what it actually means.

I know. I came across a great picture that really described it, but I probably won't find it again.

People prefer different approaches.

Especially those who have an autism diagnosis.

My ds hates autistic spectrum condition.

He prefers people saying he's autistic.

But others we know prefer "on the spectrum" "has autism" or "has an ASD".

Generally its best just to respect the person who you describing away of describing them self. And if that's "on the spectrum" then that's what you should use.

I understand that people want to use the term "spectrum" to capture the fact that autism is not some binary on/off condition.

But the term "spectrum" is itself simplistic, because autism isn't a single sliding scale, but is an umbrella term for a bunch of clusters of symptoms, which will be present to different degrees in any given person.

In the same way that "dyslexia" is now often unpacked into a number of distinct, but correlated, syndromes, I think that public understanding of "autism" will develop over time, making it easier for people to discuss it effectively.

Some examples from my own life:

• One of my DC has some symptom clusters to an extent that have resulted in an Asperger's diagnosis, although they are managing to cope with mainstream schooling and socialisation.
• I have friends with children with more pronounced symptoms, where mainstream schooling is not a goer.
• I personally have some symptoms myself, although not at a level that would typically attract a formal label of Asperger's.

Neither "autism" nor "on the spectrum" can capture all of that! But we lack the language to do any better right now, so in the meantime, I don't really mind which people use as long as they are kind.

Example of the kind of discussion that's going on: this paper https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-019-1254-1

It's just one of those phrases that helpfully let's me know to give someone a swerve. Not only ignorant but think it makes them sound knowing.

Heh...that's a pretty decent way of looking at it. My problem is that some of those people might be teachable (and thus have more value to the autistic community)...I just can't figure out which ones.

My understanding is that a condition is not lifelong even though it maybe life limiting, a disorder is lifelong though may have a wide range of impacts.

Woah back small pony! ADHD is definitely recognised as a neurodiversity! The reason is more to do with the name of the condition - Attention Deficit Hyperactivity Disorder - is hard to make an "----ic" word out of. This is something often discussed on ADHD forums. Personally, I don't mind "has/have ADHD" (and my autistic and ADHD son doesn't mind "has/have autism" etc) I prefer person-first language. Although my ADHD is absolutely integral to who I am, I am also not just ADHD and I don't really want to be defined by it. It's definitely a disability and it largely negatively affects my life, so it's something I want to treat and mitigate, not something I want to define me. But obviously people have different views on this. I do object to people trying to dictate to others what language they MUST use though, as views amongst ND people vary widely as evidenced on this thread.

But I am going off a tangent (sorry ADHD :-)), back to people on ADHD forums. What most people tend to use that's equivalent to "autistic" is ADHDers (I do use this occasionally), or some people just say "I am ADHD" or similar. I struggle with the grammar of this last one personally though!

I hope that in time with research and likely more understanding of genetics there will be more distinct diagnosis. Conversations like this will be fewer as what's covered by the autism umbrella will be less and less. As a family we've taken part in a genome study and I know many families have had results showing mutations of genes likely related to their autism presentation.

The problem is, genes aren't the only factor (at least, it doesn't seem that way). From the studies I've read, the only true test is a brain scan - it used to be that autism was considered to be a deficiency in neural connections (ie fewer connections) in the brain, but it's now known that it's the opposite...an excess of connections relative to the neurotypical brain.

The underlying condition is always the same, therefore - the presentation, however, depends up on precisely where in the brain the excess of connections is concentrated. Not only that, it's possible that the relative concentration compared with other parts of the brain is a factor too - so there would be a negative correlation (ie an excess of connections is that brain's "normal", so a more typical concentration in the speech centre may result in a non-verbal presentation).

That's really interesting. Can you point me in the direction of reading material on this please?

My friends son has had a brain scan (autism dx) as he had a large birth mark across his scalp which indicated something (not sure what) to the doctors as yo why the scan was needed. It did show abnormalities. My own ds has never had a brain scan, I'd be really interested in what it would show but he'd never be able to lie still for it and I wouldn't put him through sedation without a proper medical need, if a scan was ever offered.

The more info and knowledge about causes the better, it can only help families. I really want to know what caused my ds presentation, I go back over his/ pregnancy do much questioning if I did anything, was around any chemicals, was I too stressed etc he was conceived just after a miscarriage as we were told I stood a better chance of conception due to hormone rates. I question this decision alot.

We're still waiting for the additional findings of our genome tests.

I really hope they pinpoint and give clarity. I sometimes feel the autism dx is a get out of jail free card for doctors as it covers such a vast number of presentations. It feels like it's become an easy dx to be given rather than root out what is really going on.

If it was an excess of connections I wonder if they can create a way of removing some so that people who are really impacted can get some of the skills they lack eg become verbal.

It was several years ago that I read about it (back when I was beginning my journey), but this one's a good start:

https://www.cell.com/neuron/fulltext/S0896-6273(14)00651-5

Editing synapses is something that only happens in sci-fi - there's nothing even approaching that kind of tech in the real world. And...I don't think we (as a society) would want there to be - there's a whole level of dystopian nightmare stuff that follows down that road, no matter how good the intentions.

@xyxygy thank you for the link. Much appreciated, I'll read it this afternoon/ evening when I can spend the time digesting it.
I think science will always move forward regardless of the impact on society. If this is a possible way forward I hope it's pursued. I'm glad it isn't my decision but if it was I couldn't sentence an immeasurable amount of people and their famies to live with the severe side of autism if there was a way to improve or even"cure" them for fear of where it might lead.

Just had a quick look at that article. I need tonedit my post to 'try to digest'.

I have a DC with ASD, amongst other diagnoses (incl a moderate LD), whose ASD, or the behaviours attributed to their ASD has a profound impact on their life, their ability to function all of which means their future is looking increasingly bleak.

I am constantly tripping over myself to talk about their ASD for fear of offending someone and frankly get fed up of having to give so much thought to what I’m saying when I’m just trying to be descriptive. If someone tells me they have a preference in how their ASD is identified, that’s fine, but I find it difficult to keep up! Not least, as is shown by this thread, even those with ASD or who are autistic don’t agree. So I think the answer is to just decide what you’re comfortable with and stop policing everyone else’s use of language - unless they are of course being intentionally, or negligently offensive.

I think disability is something that you define for yourself.

This statement is similar in principle to saying “everyone is on the spectrum” disability isn’t something you “define yourself” if you’re disabled, whether as a co-morbidity to ASD or as a consequence of ASD you cannot simply decide to stop being disabled. In the same way you cannot simply decide to stop having ASD.

@Cuckoosheep you don't say how old your son is but mine started mindfulness at about 14 or 15 IIRC and it was pretty transformative in him coping.

@Daftasabroom thank you, he's nearly 13. School have started to do some basic yoga with him which he clearly enjoys. I'll look at different mindfulness techniques, I know there are many different types.