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.

No, I’m not.

If you read my posts, I’m actually arguing that we should go back to having separate diagnoses for “high functioning” autism and severe or profound autism so that people wouldn’t feel the need to constantly try and compare the two.

Yes, and dyslexia can also be mild, moderate or severe. Again, no one bats an eyelid when you say someone has mild dyslexia.

I think this is the most sensible option. I wouldn't envy the job of the people deciding where the like between the two is drawn, but I think it's important.

It should also be recognised that diagnostic criteria are highly political and shift over time.

My daughter has a diagnosis of ASD and extremely articulate, socailable, clever. Popular ( with kids who mums arent scared of her and warned them off), Meltdowns, calculated, non masker. If she is pissed you will know it. In mainstream

My son was diagnosed at 3, not talking by 7, illerate at 11, never once had a meltdown, kind, gentle, beautiful soul, severe language disorders ( see we can say severe here if its language. If he was still non verbal you might be able to say profound, I don't know, severe is in his ehcp). Been in very expensive specail schools all his life. Has zero in common with any mainstream appropriate child.

There are no similarities in their presentation. They have the same diagnosis. Struggle with the same key points. But my son is nothing like my dd and it's extremely hard to explain that without giving it a severity. He never will be on a forum defending his many gifts, talents and strengths he was blessed with.

I have met a lot of mums in my sons sen schools who's sen child has been diagnosed with Autism, been horrified, complained and had the diagnosis refused. There is still a lot of people who feel stigma about the diagnosis. I suspect it's the fear of being lumped in with ds, not the fear of being lumped with dd.

So I feel we avoid talking about ds type of presentation. More palatable to be a fiery genius like dd than in supported living than ds will be. When dd is studying maths at a Russel group uni, ds will be having a carer explain you need money for food. Yet they they are different in severity.

Unfortunately people like my son will not be represented as they can not represent themselves so the vast majority talk for them with no understanding of him and his experience.

This is so dismissive and unpleasant.

Do you say that to people with other disabilities, or is it just autism?

This explains it well. You are either autistic, or you aren’t but the extent to which it impacts - or impairs - day to day life may be mild or severe.

And, although a child may not appear ‘very autistic’ at school it doesn’t preclude their autism have significant and severe impacts later in life - when working, living alone, having children etc. People are often surprised to learn that my DS is autistic but they don’t see the migraines/anxiety symptoms/shutting down that we see when he gets home after uni interviews, school trips or exams. Or the mess in his room/bathroom as he is not able to organise himself without support. He would live on curry and huel bars if we let him.

His sister is on the ‘Aspergers’ end of the ASD spectrum and you anyone can spot her ASD the minute she walks in the room - but neither can reliably function independently for very long. 4m of uni and DD has basically been living on pepsi max and custard donuts, to avoid the shared kitchen, so unremarkably was really ill by Christmas. We are moving her into a family owned flat next month where we can ensure that a proper weekly shop is done, but she is very OCD so finds cooking [cleaning up dirty pans/plates, emptying the bins] really challenging.

I do wish they would re-introduce the categories of autism. Perhaps in a more updated form. The current blanket labelling of autism is doing most of the autistic community a huge disservice. I have 5 family members all diagnosed with autism, they range from 1 member who is completely non verbal, incontinent, smearing, in residential care with 2:1 24 hours carers, 2 members in special school 1 who is thriving and is doing ok academically and will probably live completely independently, the other in special school is struggling as the provision doesn't meet his needs and is still very much getting over the mainstream school trauma but with time and correct provision in place (currently in a 2 year long fight) will probably live independently with family nearby to support and check in. 1 in mainstream secondary with an autism unit, not doing great academically but is supported quite well at school. Is currently looking at going to mainstream college next year and doing a chef course, 1 is incredibly successful making loads of money in the finance industry, 1 has just left school and is struggling to find a job, has got average GSCEs and A levels, funds customer facing work tiring but volunteers in a charity shop sorting donations. There is no way this one blanket diagnosis is doing any of them any good. The one in finance has never disclosed his disability as he thinks he would never be employed. The 2 in mainstream also played down their diagnosis which meant they didn't access the full support they needed at times. The family member who has 2:1 care, always gets the comment that there must be more than just autism at play (once you get autism diagnosis in our LA they don't seem to want to pursue other diagnosis).

I understand your arguement yet so many people are being diagnosed that are holding down jobs and able to live independently even at senior levels. It cannot be the same thing. What ever is being classed as autism needs refining, urgently.

Who said they can’t argue for appropriate support? Support needs differ and children with differing needs don’t battle for the same support. Support that keeps my children alive is just as valid as support for children who have learning disabilities as well as autism.

This attempt to depict families struggling with autism without learning disability as sharp elbowed support grabbing monsters is frankly disgusting. Many of our children have other conditions to battle with too.

Of course you can be mildly autistic,
Several members of my family are. They all have jobs and live independently.
I also have a neighbour who's son is autistic. He is not independent.
So whether you call it mild or severe, or high needs versus less need, it's ridiculous to even equate them.
I can't believe it's even the same tbh
How is a non verbal person with incontinence issues the same as my high school maths teacher, who's married with 2 kids?
I think it's an injustice to severely autistic individuals.

I know, I was being somewhat facetious with the mild/severe. It's one part some people fall on when applying for mobility for DLA under the severely mentally impaired criteria (their child having a learning difficulty rather than a learning disability).

Where is your evidence for this? Autism is under diagnosed.We’re playing catch up with women.

But people with other disabilities don't seem to be insulted with the word mild.

It can be the same thing. Just like you can be terminal with cancer or working and living life fairly normally with extra treatment for your low level cancer.

Yes, I just found it an interesting post that so many are defending their position on how we shouldn't define a person for them but someone else felt her DH shouldn't define his own autism due to the impact it had on others NOT being mild.

Why would anyone describe what you are experiencing as "mild", of they knew about it?

It's not, however, reasonable to expect them to assume you live with that level of difficulty if it's not apparent outside the home.

It really isn’t. Autism has a severe impact on my children’s life and they are definitely not high functioning even though they don’t have a learning disability.

It is correct to describe autism as a spiky profile rather than a spectrum. However saying that one autistic person’s daily life which is objectively more significantly impacted by their needs, is scarcely undermining or denigrating to the experience of those who require less intervention. Yes you are autistic for life and presentation might fluctuate at times of crisis or other circumstances and reasonable adjustments are needed. Some young will attend a specialist SEND school whilst others can thrive in mainstream with the right support. But it doesn’t mean they don’t still struggle.

Every autistic person has their own challenges specific to them. As they say - if you’ve met one autistic person you’ve met one autistic person. But as a distinction, many autistic young people don’t go on to have eligible social care needs in adulthood. Whereas others may never live independently or even be left unaccompanied and will need lifelong 24/7 support. As with everything there is nuance and not everyone is the same. Denying this runs the risk of applying a one size fits all approach which isn’t person centred or affordable.

The best approaches give the right support at the right time to help the person live their best life. It’s not an ableist approach it’s a person centred one.

I’m not insulted by it, I just feel it’s not an accurate description and it annoys me that other people get to tell me that my disability is “only mild” just because other people have “worse” struggles.

If it has a severe impact on their lives and they aren't high functioning, wouldn't they fall into the second category, then?

I do think there is a discrepancy between the word mild and the requirement for something to have a significant impairment in the diagnosis. It creates a cognitive dissonance. How can I be mildly significantly impaired?

But in the context of looking at only peoole with autism it makes sense. Of all us significantly impaired peoole my impairments are less severe.

They don’t have a learning disability. Many many MNers have described their autism as mild. It isn’t. Like many with autism they are also battling other comorbities too which just get ignored because they’re not learning disabilities.

Their struggles are trashed because they don’t fit a picture of what others think severe autism should look like. It’s frankly disgusting. No other disability gets this.

I would say it to anyone who creates their own narrative in their head. I’ve met many people who wilfully misinterpret things to keep themselves as
the victim/misunderstood. Since you ask none of them have disabilities, but that’s not to say those with disabilities can’t also display this trait.

That’s the issue isn’t it? Whatever we come up with , some people won’t be happy, or feel it’s dismissive, or doesn’t accurately describe their struggles. Sometimes it’s a complete a mindfuck for parents/carers and the person themselves.

DD would come under mild/high functioning/Aspergers/whatever number level/insert new appropriate word here. The only reason it presents like that is because I manage the crap out of her and she masks to the nth degree. She was the kid bleeding, hiding in the corner of a playground refusing to get help because she hates any kind of fuss and attention . Just waiting for it to go away. The kid that when she was a victim of something at school was more upset by the fuss from the adults, than the actual incident.

However ,she can function and fly under the radar (one of her needs) and did so for years, while neither or I are “mildly” impacted by her autism. At the same time she’s not “as bad “ as some of the children I work with who have no hope of an independent life , getting a job etc.

I guess I’m on the fence on all this, because I have no idea where she fits , I can also see both sides of the debate and there’s no easy answer for anyone.