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.

Because it comes across as dismissive and unkind.

Lots of things are human nature, doesn’t mean we can’t find them upsetting or hurtful.

There has to be a way of reclassifying people with autism to recognise that there's a very broad spectrum of experiences, care needs etc and that some people are more affected than others - to say that someone is more severely affected because they can't speak, require round the clock care etc doesn't dismiss the experiences of someone who doesn't have those needs; it just recognises that the needs are different.

Otherwise, autism policies and care will be driven by those with the capacity to shout the loudest (those with what would be deemed on the milder end, for want of a better term) and won't be appropriate for those who can't advocate for themselves at all (on the more severe end).

Brain tumours have been reclassified lately and there's a big push away from "benign", because they've acknowledged that nothing growing inside your brain can really be benign. It can be non-malignant, but the impact on your brain is not benign, so they have low grade and high grade (and different staging within these). They aren't saying that people with low grade rumours aren't affected; it's acknowledging that the needs are different but still real and can give outsiders an idea of the kind of support the person may need.

That still doesn’t give you the right to tell me my feelings about my own disability are wrong.

This.

I was diagnosed last year, at the age of 69. I had no idea that I might be autistic, because the difficulties I have are mainly to do with executive function and motor skills, and some social difficulties.

The only people in my social circle who weren't surprised by my diagnosis were those with experience of autism either through their work or had family members who are autistic.

I've always worked, had a good social life etc. The biggest impact it has had on me has been episodes of significant burnout, almost always work-related.

I can't believe people are arguing that someone who's a GP is as severely impacted by autism as someone who's non verbal and incontinent their whole life. They don't have a voice with which to complain that their struggles are being minimised.

People use this to claim it is not a linear spectrum but you can see from this that each of the traits does fit on a linear spectrum which everyone sits on. There is no binary cut off point for any of the traits to say ‘autistic’ or ‘not autistic’ hence the diagnostic criteria have shifted over time and have encompassed more people. And yes people are impacted differently with some more ‘mildly’ impacted than others in their ability to move through life.

I would go further and say ‘autism’ isn’t a condition but merely an ill-defined symptom of numerous conditions. Of course the autism industry would object to this! But even there people no longer refer to autism and adhd as two separate comorbid conditions but ‘AuDHD’ so there is a gradual move towards recognising that autism is a restrictive description of only part of condition.

DD2 could seem 'mildly autistic' if she was in the middle of a field with some sheep. You'd notice that her converation is a bit stilted and that it's easier when she's talking about animals.

DD2 will seem very autistic in a crowded place. Headphones on, no eye contact, minimally verbal, possibly having a panic attack.

Same person, different environment, different presentation.

Even if someone is severely autistic, there will be moments when they seem manageable and moments when they can't cope at all.

If they've met the diagnostic criteria, they must be impaired by their symptoms in every day life. The fact that they can cope in some environments doesn't mean they are 'ok'.

DD3 went from being ok in years R-4, not too bad in years 4-6, slightly stressed in years 7-8, quite tricky in years 8&9, predicted 9s in GCSEs in early year 10, to completely out of school in mid year 10. Now in special school. Same girl, different demands.

What words would you use to make that distinction? I can see why mild feels dismissive to you.

I think it is ridiculous to suggest that somebody cannot be autistic because they have managed to sort themself out a life which fits their abilities and traits and so are not "severely" impacted by it.

I also think it's obvious from people I know with an ASD or ADHD diagnosis that many people who assess them are using the term "severely" very loosely in their diagnosis. My experience of two people quite close to me is that any mention of suicidal ideation would get you that box ticked.

You can’t tick box or categorise autism it’s a spectrum. Nobody with autism gets to shout. All are frankly treated like shit everywhere. Those where it is less visible are belittled and do not get the disability adjustments they should. It’s frankly appalling.

Probably because she is well supported. If there are people around who understand the condition and her needs then it can look very much like she is coping well.

I have a colleague who was diagnosed with autism last year in her 50’s. She has raised a family, holds a professional job and has probably looked like she was coping well for most of her life. Under the surface she almost certainly wasn’t - or why would she have sought a diagnosis?

I agree with you OP, and where does the blanket description leave those who are so severely affected by autism that they cannot function at all when someone else affected by autism may be able to go to school, have some friends, and become a brilliantly successful academic, say, when they grow up?

I heard an expert speaking on BBC Radio 4 recently also say they thought it made it more difficult without the description Autism Spectrum Disorder.

The danger is I suppose if referring to ASD means a child like your daughter’s problems get ignored.

That's really interesting thank you. Up until now I'd assumed the autistic spectrum was linear.

It is the diagnosis criteria!!!!

And there you go again dismissing a disability . No suicidal idealisation is not going to get you an autism diagnosis. There are several traits and areas you need to reach the threshold hold for.

Absolutely, irrespective of whether they present exactly in the same way as someone else who describes themselves differently.

But if a person describes themselves as mildly autistic and their family are highly affected by that person's autism, should they be able to say "no, they're not mildly autistic"?

Here's an example of an autistic person's profile. You can see that if someone scores highly in the social and communication areas, you will be less likely to think of them as autistic. But you won't be able to see the areas they score lower on that cause them issues.

You realise there are people with severe impairment in all those areas, and others with mild impairment in some areas?

How could one possibly view the two as equally affected?

You can’t categorise autism with words!!

I would go back to having separate diagnoses like we had 20-30 years ago (Asperger’s and Autism) though I appreciate that’s very controversial for many.

Why do people have to take offence at everything.
We’re talking 30 years ago. When there is no understanding and no help, you simply have no choice.

I’d love to know why other disabilities don’t get pulled to shreds and dissected like this. Actually I do know, people just don’t like autistic people and it’s less visible.

It’s frankly disgusting the way autistic children and adults get treated on a daily basis. Just awful.

Some diagnosis in the UK now come as Autism, level 1, level 2 and level 3. A relative recently received a diagnosis with level 2. It made sense.

It is very unkind of those with jobs/families/homes to tell families of profoundly autistic individuals who need constant 2:1 care that they are just as impacted by their autism. It stops profoundly impacted individuals getting the care and support they need.

Which she was, at 4 years old. One of the main reasons she was referred was because she wouldn't look at or speak to any of the nursery staff despite being able to talk. She had meltdowns where she would bang her head repeatedly off the floor, she could not tolerate socks at all, if she got slightly wet she would strip off wherever she was and run around flapping her arms, if we were at a party or restaurant she would sit on my knee and refuse to move for the entire time, she wouldn't walk on grass or sand, she would melt down if it had rained and she had to walk on wet ground. She had a very high pitched "unusual" style of speaking. That's only a few things, there was more.

By the time she was 10 years old she had turned in to the most chilled out person I'd ever known, she still will not wear certain things, she's not a fan of the beach, if we're at parties she will still sit on the sidelines but she's absolutely happy to be there. She actively wants to go out and do things, loves school, is still shy and quiet in front of people she doesn't know, she sees no need in small talk or having a conversation for the sake of it. She has extreme special interests which bring her a lot of joy. She is definitely still autistic but it is mild.