Explain to me why you offence is caused by saying things like 'mildly autistic' etc.

[Purpleturtle45]

If ASD is a spectrum why do people commonly disagree that you can be mildly autistic or severely autistic etc.

My daughter is diagnosed with ASD, however you wouldn't really know unless you knew her well. She goes to mainstream school and copes well with everyday life most of the time so to me I would say she is mildly autistic but I often see people getting ripped to shreds on here for using that term.

Genuinely wondering how 'spectrum' can literally be in the title of the condition but people disagree there can be different severities.

It's not a spectrum from more autistic to less but rather a spectrum like this

You either have autism, or you don't. Within the diagnosis of autism there is a spectrum of traits which vary between individuals. This unique constellation of individual traits can result in very different life experiences, skill sets and capabilities. You can't be a little bit autistic, it's like saying you're a little bit pregnant - you either are or are not.

First response nails it. It's not a spectrum of mild to severe, it's more like a colour spectrum.

Much like how each colour is made up of a certain amount of red, green, and blue, each autistic person's experience is made up of a constellation of traits. In fact, in order to be diagnosed you must be significantly impaired by your symptoms.

I am highly verbal, for instance, and I can execute a basic routine to get myself through life- keeping myself fed, rested, and clean. I wasn't diagnosed until my teens, but with the help of my family I made my way through school, undergraduate studies, and a master's degree. Now I have contract for ad-hoc work in a field I can cope with. I have three close friends whom I love dearly, and many friendly acquaintances I'd love to get to know better. I travel when I get the chance, mostly around Western Europe, and I enjoy travelling by myself.

I also need help making and maintaining such routines when faced with unexpected changes to my plans, sensory overwhelm, illness, and more. I already need a lot of help maintaining my routine but if any of those happen, I will need even need support to make sure I don't spiral. I need multiple daily medications to uphold even those basic standards, the prescriptions and ordering of which are managed by my family. I learned a long time ago I need help keeping a space clean and tidy, otherwise I cannot maintain a healthy environment. I have a very limited and beige diet, which I struggle to break free from. I'm also prone to shutdowns, during which I can't speak aloud, and have during some times in my life been equally likely to have self-injurious meltdowns. I have my mother to help me with all of those, and I don't know what I'll do when she's gone. It terrifies me.

All in all, I know I'm considered "mild" in many people's understanding, but I don't think the label fits me very well. I have some mild and some more severe symptoms, and times in which those are made better or worse by my environment, overall health, and stress levels. Almost nobody sees what I described in that second paragraph on my traits, symptoms and experiences, but that doesn't mean I don't experience such struggles. I always have, and I always will.

I've learned through many discussions over the years that any "subcategories" proposed to delineate between different experiences of autism are unlikely to ever actually accurately classify me, nor the other autistic people I know. I think there needs to be better linguistic descriptors of symptoms and support needs so that nobody slips through the net, but "mild" isn't a word I think can be used to describe autism.

If you're autistic, it is something that filters through your entire life. It is an inherent part of you, and nothing about that impact is mild no matter how it may appear to others.

You are either autistic or you’re not. What that looks like it different for each person which is where the “spectrum” element comes in.

Well is there being a little bit pregnant, have a little cancer, a touch of typhoid, a smidgen of HIV, what about have a small bit of measels

Certainly cancer, typhoid, and measles can come in milder and more severe presentations. Untreated HIV is, as far as I’m aware, always fatal, but some infections respond to treatment much better and symptoms are more mild.

Well you are either pregnant or not you are either have cancer or you dont same with the others ypu have them or not

I have had cancer. My friend has cancer. Mine didn’t impact my life in any way and was treated rapidly by surgery. It will not return. Hers is terminal, cannot be treated by surgery and will kill her within 3 months.
There is very much a sliding scale of cancer.

Yes but people either have cancer or not

OP has only said Autism can be mild in some people. That is not at all incompatible with it being something that people have or don’t have.

Autism is diagnosed by the severity and frequency of symptoms being subjectively graded and summed and then applying a subjective threshold. This is a scale of severity, all be it an often messy one on more than one axis.

You have cancer or you don’t. And it is definitively diagnosed by identifying cancer cells. But the severity of your cancer (stage 1, 2, etc.) is decided on using a diagnostic scale that is more subjective - like Autism.

There are of course milder and more severe forms of autism. It's the milder cases that have skyrocketed in recent years and many people seem to believe they are representative of all autism. They're forgetting the children who often remain non-verbal, incontinent, and socially cut off all the way into adulthood (and whose diagnosis rates have remained stable). They don't post on Instagram and tiktok so can easily be ignored.

This.

You see hardly anything about non verbal, meltdowns for tiny changes to routines, round the clock care and 2:1 or 3:1 support going out and about.

My niece is what my sister calls ‘profoundly autistic’. I totally disagree with the posters who say ‘you are either pregnant or not’ - that is not at all what I believe the OP is asking. My friend is autistic. She is a successful business woman with an PhD and single mother of three children. My niece is non verbal, goes to a special school and will never live independently. Both are autistic but surely one can say, if not ‘mildly or severe’, something like ‘high functioning and profoundly’?

I’d love to know how she has an autism diagnosis if she copes well with life most of the time. Autism needs to have a significant impact on life to reach the threshold for diagnosis.

You really are talking about something you know little about. Previously 50% of the population were excluded from an autism diagnosis- women and girls. We now know how it can present in women and girls so this previously excluded section of society are being diagnosed more. To get a diagnosis it needs to have a significant impact on life so there is nothing mild about it.

My children are bright to the extent they will probably eventually reach education to degree level with support however they are still severely impacted by autism,they need services at a high level and 2 can dip in and out of being non verbal.

Certainly, but it’s a clinical line, ie you have cancer when the behaviour of mutating cells becomes clinically relevant. Everyone has cells that are mutating in cancer-relevant genes, and the degree to which that causes problems is, to borrow a phrase, a spectrum.

Girls were included in the original autism research in the early 1900s.

I fully believe your children face many challenges due to their autism. That doesn't mean it's not a milder form than what some others have.

Frankly I think it's arrogant to claim otherwise. You are dismissing the realities of the children (and their parents) who will never be able to live even semi-independently.

i am not offended but it is a bit of a daft thing to say.

My son is high functioning autistic. Until he has a meltdown of course and then he most certainly isn’t.

I do find myself caveating “autistic” with “mildly” when I’m talking about him. I started a new job recently and had to explain to my boss that I had a series of appointments coming up relating to his autism and adhd and I did find myself describing his autism as mild I guess to explain that he goes to a mainstream school etc and my life isn’t impacted as heavily as someone with a severely autistic child who requires specialist care etc.

I actually don't agree with this. I have read specialist reports saying 'meets some of the criteria for an autism diagnosis'. You couldn't say this about pregnancy. It is not like you can pee on a stick to find out if you are autistic. There are basically a list of traits and if you have enough of them you get the diagnosis. I think it is a very grey area and possibly includes different conditions lumped under one umbrella.

Girls were shut out of the diagnosis process for years.

Its hugely arrogant to speak and pontificate about the disability my children struggle massively with on a daily level needing a high level of services. You know absolutely nothing about their needs . Denying the severity or validity of their disability is ablism pure and simple.

It's not a spectrum from more autistic to less but rather a spectrum like this
Well even with that spectrum, there is a scale. There are shown in your picture as circles. If someone traits fall under a larger circle, they will be 'more' autistic.

I'm with you OP. Some people like to make it academic but the reality is that some will show severe traits of autism and others only very mild. My eldest probably would fall under the latter as many undiagnosed people with the way autism is classified nowadays.

Thanks for taking the time to reply to me, I can see it's divided. I can see what people are saying about pregnancy, cancer not being an appropriate comparison. Many conditions do have a difference in severity and I can see some people on here think autism is the same. I personally am inclined to agree and can both things not be true; there is a spectrum of traits/behaviours but also severity?

It's also not a cut and dried diagnosis like cancer and more relies on opinions. Some people can have autistic traits but not have autism and are surely borderline for diagnosis.

Honestly, I think it’s because those with lower support needs don’t like to feel like they’re being identified as being lower support needs and unfortunately those who genuinely do have high support needs (like my son) are not actually able to advocate for themselves because their needs are so high they don’t even realise they have, or understand the concept or, ‘support needs’ they are too busy trying to run into traffic or eat dead animals they find on the floor.

Meanwhile those with medium/low support needs who do understand and can advocate (like myself) genuinely think that their struggles to fit into society and mask day to day, are as bad as it can possibly get and that having a panic attack in a supermarket is somehow comparable to living your entire life in a care home with severe learning disabilities.

The ‘it’s not a competition it’s just a spectrum’ narrative works immensely well when those on the severe end are unable to advocate for themselves