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.

I agree.

There is a ‘culture wars’ feel to narratives about autism with some loud and controlling ‘advocates’ seeking to control what people can and can’t think about autism and, indeed, different experiences about autism.

The experience of non-speaking autistic people is rarely included in research and advocacy. Many autistic advocates insist that they are the experts on non-speaking autistic people, often espousing claims that don’t resonate with carers, teachers and family members.

Clearly, there will be fundamental differences in how the world is experienced by those who can speak or use communication devices that enable fluent ‘speech’ and those who have limited means of communicating.

Autism is a lot more than language difference, but the language capabilities are a significant differentiator.

It definitely would be helpful to have shared terminology that signposted more that ‘autistic’ does with regard to someone’s support needs.

This

Oh ok. I did misread that.

Same. I managed fine until university but ever since then my life has been a series of breakdowns, shutdowns and meltdowns.

I can’t work full time. I can’t go to supermarkets without feeling physically unwell. I’ll certainly never be able to have children. I struggle with intimacy. I struggle with conversation. The only reason I can earn an income is because I run my own business and work alone, but I can’t do more than 25 hours a week without burning out and going into shutdown. I’m medicated and in therapy and probably will be for the rest of my life.

But on the outside I’m verbal, look “normal” and fit in, so people don’t care about any of that.

Exactly so in this image for example, how would you label the person?

When people say ‘severe’ they often mean severely affected in a particular area and other learning disabilities can be included.

It’s my bad, I hadn’t finished my coffee!

Why is it ‘incredibly ignorant’? It’s far more ignorant to suggest to a parent whose child needs round the clock care in adulthood that all autism is created equally. It absolutely isn’t.

Dd is autistic. She has her own home, a partner and a job. She lives a fully independent life. Yes, she has challenges but they are nothing compared to my none verbal dn who will never live independently, have a job or a partner. The worry our family have for their future is immense compared to our concerns for dd. So I do use labels like mildly autistic and severely autistic , as does the rest of my family.

Because it dismisses people’s needs.

No, the needs are not the same because the profile of different kinds of challenges is not the same for each person, and because the extent to which someone is affected by something is not defined by how much that thing affects you as a nearby non-autistuc person.

Think of the "spectrum" as if each autistic person is carrying around a metaphorical briefcase containing 20 envelopes each of which represents something that is part of the autism spectrum. Each envelope might have details of significant support needs for one person, or might have medium or low needs for others, and for some it might be that there's nothing anyone can do by way of "support" because nothing will help, and the person just needs to to understand not to put them into particular circumstances where that will be an issue. You don't always need to know what's in every envelope so you are unlikely to have a full understanding of each person's needs, but you can't assume the contents of any of the envelopes on the basis of what you know of the small number of aspects that you can perceive through the distorted lens of how much inconvenience their condition has been to you so far.

And no it is nothing like cancer. Cancer starts and grows and then is treated and perhaos shrinks or perhaps is completely stopped and removed. Autism is a lifelong condition that doesn't get "cured" - you just learn to live with it.

No it doesn't. It just acknowledges that some people might have more/fewer needs than others.

I hate this pregnancy analogy. It’s utter bollocks.

Pregnancy is a completely different state which is not in a continuum with not pregnant.

Having a diagnosis of autism depends on displaying enough behavioural traits for a Dr to award the diagnosis. These traits are on a continuum. There is a normally distributed bell shaped curve of social communication ability and all the other characteristics. The only way that the world is divided into NT and ND is by where we have placed the diagnostic threshold. It stands to reason that you could get over that diagnostic threshold by a country mile or by a marginal degree. The same is true of ADHD. It’s much more like hypertension than pregnancy. You have hypertension if your blood pressure exceeds the number specified for diagnosis but that could be by a lot or by a little.

I realise that this view is ‘wrong’ but I have yet to have anyone explain in a credible fashion why autism is a discontinuous state with not being autistic.

Why does it? It goes without saying that all autism sufferers will have additional needs. They wouldn’t have a diagnosis without those needs. But some sufferers will have far greater needs. But if we say that, we’re somehow dismissing the needs of those who aren’t as badly affected. It makes no sense at all.

It’s actually the ones with the highest needs who are being dismissed, by making out that they’re no more badly affected than a person who can hold down a job and make themselves a sandwich, or bath themselves, or have a relationship.

I don’t think there are any laws that prevent a person describing themselves or their children as ‘mildly autistic’, if that feels comfortable - don’t! The language policing comes along with professionals and the guidance given from authorities above.

It's the current fashion. It gives my friend with a profoundly autistic son the absolute rage. He is 12 and has never spoken a word, never come out of nappies, requires a wheelchair for anything more than short bursts of walking, and she is already desperately worried about his care when she is elderly and after she dies, and yet she's not allowed to say his autism is more severe than the children with ASD I teach who are gaining good GCSEs and going on to lead independent lives.

Exactly.

Whether or not someone reaches the diagnostic threshold is determined by the level of impairment someone experiences. If their symptoms are present but not impairing, the assessment is considered to reveal ‘autistic traits’, rather than having a diagnosis.

Context plays a big part. An ‘autistic person’ could be diagnosed as autistic if they live and work in an environment that is disabling to them (e.g. a busy, noisy city) and as having traits if living in an environment that they are well suited to.

Understandably, conversations about autism tend to be dominated by categorical thinking. It is also understandable that autistic people can be sensitive to discussions because autistic difference.

My friend’s adult son is on the spectrum. He holds down a job and lives independently with the help of his mum. He has sensory issues and can barely read or write though so jobs requiring that are out for him. I know of other severely autistic people who need constant care.

I hate this argument. I don't give a shit that's the technical definition. It may mean something to the medics, but in real life that definition makes no sense.

I have ADHD and I'm told that I must be disadvantaged in order to have that diagnosis.

I am not disadvantaged. In many respects my traits are a positive advantage. In other respects I chose a job/lifestyle etc which fits my traits.

My OH is the same, he is autistic. He's had a hugely successful life as an engineer and a business analyst.

The "spectrum" talked about is shorthand for how well you can find a fit into modern life that disadvantages you in the least possible way.

It is perfectly possible to have mild autism and mild ADHD. It does no favours to the more disadvantaged or the less disadvantaged to pretend otherwise.

Yes I think that’s a lot of it. Autistic people obviously want this to be black and white. That’s kinda in the definition.

Because most people who use the term mild to describe other people’s experiences, despite having no real clue about them, are doing so to dismiss them. It is what people, usually breathtakingly arrogant, unqualified, neurotypical people who have a bee in their bonnet about autism and think they know it all because their cousin is autistic or they’ve ’worked with autistic people’, say to others they’ve decided don’t deserve a diagnosis, or understanding or empathy simply because they don’t see, nor understand, the impact of autism on them. If someone’s autism doesn’t impact on you then you dismiss it. It is a blinkered, ignorant stance to take.

That is the issue. The dismissive nature and intentions that underpin the use of it.

The other issue is the comparison made. Of course when you compare a person with very high level support needs to someone with lower support needs then, yes, there is a difference……but what does this comparison actually achieve? Nothing. It’s just what people use to try and justify treating other people like shit and making dismissive assumptions about someone else’s experiences and life.

When we label people as 'mildly autistic' it can minimise issues and mean that they don't get the support they need. Conversely, the label 'severe autism' can be taken to indicate a low IQ, when that is not the case. We have to see all people as individuals and support to their individual needs, strengths and limitations.

So when a friend says "I can't take my severely autistic DC there" I should tell her she's wrong?

Or when a parent says "DC have autism but it's relatively mild, they're in MS and need support. At home we do xyz". I should tell them they're wrong?

But that’s not how it comes across. When you tell me I have “mild autism” it feels like you’re telling me my needs aren’t a big deal because I present as normal.

Exactly how my friend’s autistic daughter is - non verbal at 8, still in nappies. My friends says she is severely autistic, whether that’s acceptable or not who knows, but it’s a whole different level than some of my recently diagnosed autistic colleagues.

Dont they use level 1, level 2 or level 3 to indicate how much support an autistic person needs? Or is that an american thing?