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.

At least you're open about your ableism.

This is a great visual.

Yes op, because you either are or are not autistic. How that will affect you will be completely individual to the person but it doesn't make them any more or less autistic. It just may affect more areas of their life or mean they require more support in certain ways than someone else might. The being autistic is seperate from the traits of the individual if that makes sense.

America uses the levels so why don't we? I put my son just into level two right now.

How dare you tell other people how to describe their own experience of autism!

They don’t have a learning disability ergo certain MNers who think they’re the font of all autism knowledge would describe their autism as high functioning or mild .It is not. I have met many many adults and children with autism and no learning disability on our journey and the vast majority have horrific struggles like we do. It suits the abelist anti disabled lobby to dismiss autism and the need for adjustments and support.

My five year old little girl has an autism diagnosis since the age of three, she was non verbal until four . We are not in the UK but unusual for modern times her autism was graded at level two, higher support needs. She’s fully verbal now and in main stream schooling . To outsiders she seems like your average bubbly chatty five year old at home it’s a much different story. A while back someone on here explained mild versus higher need autism much more concisely than I ever could.. she said “ so called mild autism is how it affects those around the autistic person” not how it actually affects the person themselves “ this lady had a diagnosis herself and her words really resonated with me .

I think in time it will emerge that those with so called high-functioning autism have something completely separate from those with something so severe that they are unable to function at all and are mentally disabled to the point they can't communicate and have severe learning disabilities.

I beg your pardon, I am not. I’m referring to how certain MNers describe MY children.

And here we go again🙄

but she is very OCD so finds cooking [cleaning up dirty pans/plates, emptying the bins] really challenging.

OCD is another condition that people throw out there as if it is just about being tidy. You either have OCD or not and if you do it is about how under control it is. If it is ‘very’ not under control then she wouldn’t be capable of living being independently and accommodating her compulsions makes it worse. It is very different from an autistic person who likes things a certain way or dislikes a dirty kitchen.

I mean, America does lots of things I wouldn't like to see here! And to be honest I wouldn't have said they hold a good standard in terms of ableism and how people with disabilities/ND/SEN are treated so they wouldn't be where I'd be looking for a bench mark.

I imagine there's also an argument that using a scale approach kind of almost writes some people off instead of us taking a more holistic approach to look at what support it is that they need. It also might perpetuate some of the stereotypes and stigmas around autism.

I love this way of looking at it.

What a load of nonsense. I'm seeing people who are capable of coming onto Mumsnet and articulating themselves, complaining that a certain, helpful phrasing, which people may use for family members who will never have the capability to converse like this, minimises their struggles.

No. The fact that a person has reached the threshold of diagnosis at all means that they must struggle in day-to-day life due to their autism. This is acknowledged.

What it does is differentiate it from others who have autism. Yes, there are variations of presentation, but those variations can also be milder or more severe, while still causing significant impact as compared to people without autism.

So a person who has more extreme variations, or has limitations in areas that (for instance) impact them to the point that they are non-verbal, or need carers, could be reasonably described as having severe autism (or profound, etc).

Whereas someone who meets the diagnosis threshold but is able to function in society day-to-day in terms of caring for themselves, paying bills, buying groceries etc would be reasonably described as having mild autism, because it impacts them to a lesser degree than it impacts others with autism.

It's not about minimising struggles (obviously everyone with diagnosed autism must be significantly impacted) it's about describing the degree to which autism may affect a person as compared to others with autism.

Is it a hindrance that makes life difficult to manage, and can restrict one's opportunities? Or, is it a total barrier to ever functioning independently in society?

These are very different things. (And I say this as someone who would describe myself as having mild autism.)

I don't understand you.

Disability benefits are based on need not diagnosis (though diagnosis may make claiming them easier).

Empathy is based on perceived difficulty.

You can't expect people to assume that everyone they meet has difficulties which they don't know about which they should be emphathising with.

People can't take everyone saying they are struggling at their word without seeing the struggle because we all know how many blaggers there are in the world.

Life is difficult for so many people. So many, many conditions have hidden disabilities. I don't understand what you actually want changed.

It isn't about how MNers would categorise them though, under this system of two different diagnoses it would come down to how a doctor (ed psych? I can't remember who the person who does the diagnosis is called, it's been bloody years since my ADHD one) classifies them according to a list of criteria.

It also then allows for different levels of support to be provided more easily (in my utopian society where everyone gets the support they need; I'm suspending disbelief here 😒) - the first diagnosis would look like support with managing emotions, with employment, managing triggers and crises, managing fully independent living. The second diagnosis would have support tailored more towards encouraging some aspects of independence when someone will never live independently, different communication possibilities for those who are non-verbal etc.

Sometimes the support needs would overlap but sometimes they wouldn't; it means that people get more targeted services. Again, in my utopia where the services are there for people 🙃

What we know is that in reality, those in the first category would be told "you're not disabled, no support for you" and those in the second would be told "you're too disabled to be helped, no support for you".

There's no easy solution.

Because the American diagnosis system that levels is mis quoted. They are referring to support needs and they actually say themselves support need levels can change throughout life. My children have changed with 2 being in all levels as regards needs. You just can’t categorise autism.

You would need to constantly need to be re diagnosed to get support and we are massively under diagnosing now with huge wait lists as it is.

Agree

It's helpful to highlight that autism is a spectrum of different traits but I don't understand why we can't describe some people as "mildly" or "highly" depending on the impact it has on that person's life

I think there are thousands of different conditions that each have as part of their presentation a collection of symptoms that are currently artificially grouped as ‘autism’.

I’m a private tutor and I get a lot of autistic kids so when I talk to them about it I don’t say mild I normally talk about how it impacts me and what I do to cope and then ask them to share the same. Sometimes when I talk to parents I say mild or just because it saves time explaining. The only thing parents really need to know in terms of my autism is that I need direct communication, I don’t mind if the ask questions but it’s normally something I just briefly mention. They don’t really care, apart from one dad who said “an autistic maths tutor, jackpot.” Which I take as a compliment.

So autism is a fashion now- how offensive!

My son is diagnosed ASD (no category was given). I label him as high functioning: he does well at school academically, is extremely happy, bright, verbal and sociable, loves company, contributing his ideas, and playing with other children, and has never had any meltdowns, either inside or outside of home.

On the other hand he struggles with executive function and aural processing and is possibly dyspraxic. He has sensory needs which need addressing throughout the day. His sleep can often be poor, and he is beginning to struggle somewhat socially with his peers as he seems less mature than them, while they are wanting to grow up and have started to have more mature interests.

He may well need us to parent him for longer than NT adult children when he grows up. And although he may very well (I'm hoping) be able to function in society independently, he will always have his issues, and we will always be there for him if he needs us.

He is certainly not on the same level of need as the children I see at my job in a SEN school, the great majority of whom are non verbal autistic children who require constant care and attention, who become easily dysregulated and can hurt themselves and others, who don't understand how to keep themselves safe at the most basic levels, who struggle with the basics of life such as feeding themselves and toileting, many of whom are still in nappies.

They are really not the same, and I think it's important everyone feels comfortable making the distinction between levels of need. I believe we should be able to use the level of need categories of 1, 2 or 3 for everyone's sakes. It is there to help.

That isn’t what she said. You’ve wilfully misconstrued it.

It's not about minimising struggles (obviously everyone with diagnosed autism must be significantly impacted) it's about describing the degree to which autism may affect a person as compared to others with autism.

I think the issue is that nothing is black and white with autism. There is no test. What someone sees as a real hindrance, someone else won't be bothered by anywhere near as much. Both people are still autistic, but how you define the severity?

That isn't what was said. You're doing your cause no good by seeing offence everywhere.

Because when most neurotypical people use the term "mild" autism, they're referring to the impact the disabled person has on them, not the impact of the autism on the person who is actually disabled by it.