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 don't think insisting works to be honest.

I have insisted, and I've been provided therapy, and I've been told everything from too self aware, too rigid thinker, they're not specialised, they don't have the budget.

So they can and they do take you but they can't adapt their therapies in a way that helps autistic people.

This to me is daft, because there's a significant amount of evidence that shows that autistic people who are "high functioning" or low support needs often have increased risk of mental health conditions as comorbidities, increased suicide attempts and increased suicides. This makes the concept of mild autism extremely unpalatable.

I don't really get why people find it so controversial.

The diagnostic criteria were deliberately broadened in the DSM to scope in "milder cases" of autism that didn't previously meet threshholds for diagnosis - purportedly to enable those individuals better access to behavioural interventions/therapies. This is well known. It is not simply that "we are better at recognising and diagnosing autism". The criteria were widened, to include milder presentations.

However, thats quite an Ameri-centric approach driven by their insurance funded healthcare model, which theoretically has no limit on the supply of services. What is available will simply increase in respond to demand (albeit at a cost). Widening the scope of who will expect support also nicely increases the flow of profit to the huge healthcare industry.

This would be illegal under the equalities act in E&W because you cannot have a service that fails to make reasonable adjustments for disabled people.

Our service paid for therapists to be trained and offers modifications. Same as we would get a sign language interpreter or pay for a specialist deaf service if the person was deaf and the clinic rooms and toilets are wheelchair accessible. To comply with the law.

I’m quite sure a lot of what goes on on the ground doesn’t comply with the law unfortunately. Probably both in Ireland and the UK.

Often what happens, as @Jimmyneutronsforehead pointed out, is that they end up providing services that aren’t at all suitable.

A court battle ahead perhaps?
I don’t know.

Mild is how other people perceive autism within particular people, it isn't how it is experienced

You cannot speak for other people like this. I know one and I am sure there are plenty of others who would describe the impact they experience a "mild compared to other people".

This insistence that everyone who is autistic is having serious difficulties dealing with it all the time is alienating everyone who deals with other conditions and problems.

If it continues, it will lead to less sympathy for the problems experienced by autistic people, not more.

I think you may have misunderstood my point. I wasn’t speaking for all autistic people, and I didn’t say that no one experiences their own autism as mild.

I said that ‘mild’ refers to how autism is perceived externally, not to the absence of difficulty. Those are different things.

Someone can appear to cope well and still experience significant internal effort or impairment.

You don't get an autism diagnosis for fun, you get one for having persistent deficits since childhood.

Of course individuals are free to describe their own experience however they choose. That doesn’t change the fact that external presentation and internal experience are not always the same, which is the distinction I was making.

I’m also not sure why this would alienate people with other conditions. Acknowledging the reality of autistic experience doesn’t diminish anyone else’s. Not really sure why you're bringing other conditions into this.

We have already establish all of that and it is not disputed, except that you DID say

"Mild is how other people perceive autism within particular people, it isn't how it is experienced"

not

Mild is how other people perceive autism within particular people, it isn't how it is necessarily experienced by that person

still less did you acknowledge that it certainly is perceived as mild by many "higher functioning" people with autism with jobs and lifestyles that fit their needs.

And of course nobody is able to speak for anyone but themself in that regard.

My 9 year old has recently been diagnosed. He is academically where he should be for his age. He is what some people evidently here would call mildly autistic. It doesn’t feel that way though when he is punching himself in the head asking me what the point in him being alive is. When he's inconsolable every morning before school, and in meltdown from masking all day after school. When I’m having to lie with him for up to 2 hours for him to fall asleep.

Anyone who knew that and called it mile would be a pillock.

I hope you can get the poor lad some help.

And of course nobody is able to speak for anyone but themself in that regard.

But, you're talking for other people.

Thank you, it’s absolutely heartbreaking. I always just thought he was very anxious but the past 12-18 months have been awful. Did an online course the other night where the facilitators reminded us all that suicide rates are higher for autistic people. It’s terrifying.

I have spoken for only one and he is my husband.

It is my belief that he is far from alone, but I am speaking for no-one.

You appeared to speak for everyone. Are you saying there are none who would call the impact on themselves mild?

I agree with you. There's a WORLD of difference between an autistic child who's non - verbal, aggressive, in nappies, smearing faeces and is never going to live independently - and my child who yes, is autistic, and yes a bit odd, and yes completely oblvious to reading emotions - but can go to a mainstream school.

I would rather there was a different term tbh as I feel the type of autism my child has is in no way comparable to my friend's son. Not at all.

My child was like this. We moved schools. It stopped. Your school clearly isn't meeting his needs and that's how it's portraying.

still less did you acknowledge that it certainly is perceived as mild by many "higher functioning" people with autism with jobs and lifestyles that fit their needs.

Uh huh. So your husband is many people now?

I think you'll find I said particular people.

Can you see that there is a world of difference between implying that nobody perceives their own condition as mild and me knowing one and believing it extremely unlikely that he's the only one?

You did say particular people, true. You meant that some were recognised by others and mild and the rest were recognised by others as worse than that.

You did not acknowledge that there are people who perceive themselves as having autism mildly compared with others.

Do you now?

I haven't said anywhere that an autistic person can't perceive their own autism as mild.

I have said mild is how autism is how it is perceived. Not how it is experienced.

If you want to continue to be pedantic you could say I haven't specified which percentage of autistic people would say that they experience their autism more than mildly, which is true. I haven't.

To be diagnosed as autistic you have to have persistent differences that cause clinically significant impairment in functioning, and that are present from early development.

If your husband has never had persistent differences that cause clinically significant impairment in functioning, present from early development then I'd wonder what his diagnosing clinicians reasoning was for offering a diagnosis.

People like Einstein, Mozart, Bill Gates and Elon Musk are autistic. Not just a bit, but totally. You see it at first glance, there is no hiding it. It shapes all aspects of their lives. But they have little/no support needs and their lives can't be compared to someone who needs fulltime care and supervision. Their lives can't be compared to most neurotypicals, as they can achieve much more than non-autistic people and are 'independent' to a degree only a self made rich genius can be. Autism can come with many different levels of support need, with many autistic people being fulltime carers or leaders or even oppressors and warfaring emperors rather than victims needing support. But it's still fullblown, easy to diagnose autism. It's e.g. having extreme hyperfocus that let Bill Gates write code for 147 hours per week, a hyperfocus furing which he can't eat or drink and would mrlt down if stopped. It's having e.g. extreme sensitive hearing and perfect pitch together with hyper focus that let Mozart be Mozart. Einstein had to be home/self educated as he couldn't bear school but happily taught stydents at Princeton. They all fell somewhere on the extremes of the autism spectrum. They all struggled and needed support from parents/partners/employees, but it's obvious that their needs differ from many other people with ASD. All people with ASD fall within a massive range of very varying support needs.

I have said mild is how autism is how it is perceived. Not how it is experienced.

By this do you also mean that perceived by the person who experiences it is equal to being how the person experiences it?

To be diagnosed as autistic you have to have persistent differences that cause clinically significant impairment in functioning, and that are present from early development.

They only have to be present causing significant impairment at the the time, with evidence they existed before and have existed for some time. Once you have the diagnosis you have the diagnosis, it never goes away. We have already established above that many higher functioning people can get themselves into jobs and lifestyles that suit them and can be mildly impacted in their own estimation at that point.

I would also suggest that once they have a diagnosis and understand their conditions, many higher functioning people will make lifestyle changes that mitigate the bad effects.

It's also been reported over and again above in this thread and on others that the condition can vary in any one individual so that they can be mildly affected for years and then be triggered into a serious deterioration.

We have already, I believe established that expressing suicidal ideation would give you a positive on "significant impairment" no matter what the other impacts on your life were. Interpretation of "serious impact" is so open to interpretation by the clinician that I find it pretty useless to keep pointing out that's the definition.

I have an ADHD diagnosis from an NHS adult ADHD specialist psychiatrist where he also made the judgement that it had a serious impact on my life. Yet I would describe my own presentation of ADHD as mild because I managed to create a lifestyle that plays down my weaknesses and a career that played heavily to my strengths, without prescribed medication.

I don't understand how you can't see the damage it does in the wider community to insist that everyone who has an ND diagnosis is living with serious difficulties.

And even more damage to do as others on this thread have done and insist that nobody who is NT can possibly have it as bad as they do.

Is putting words in people's mouths a skill of yours?

We don’t disclose my daughter’s autism diagnosis as it’s just too vague a term to describe her (very minimal) needs. She does have a separate diagnosis which describes those needs and which we do disclose if needed.

But how did she get an autism diagnosis if all her needs are covered by a different diagnosis? Do you think the autism diagnosis inaccurate or simply unhelpful?

Definitely think her diagnosis is inaccurate. The assessment process seemed quite half hearted. The very brief report was riddled with inaccuracies that I had to push to have amended - although school never came back with their accurate information, so that remains. School pushed for her to be assessed and I agreed as they led me to believe that she’d get some support for her issue that way, but there’s none available. Absolute waste of time tbh!

I’m sorry to hear that @SeriousTissues. The SEN board can be helpful depending on her needs. There may be someone who’s been in a similar position who can offer advice.

Thanks but we’re OK. I subsequently took advice from an Autism charity who were very helpful. . The other diagnosis can be linked to autism but can also be standalone, just no support for it. I had quite a showdown with school who were being quite autocratic and after two years of fighting I got her the minor reasonable adjustment she needs (to be fair, it’s not perfect and there was compromise but my daughter’s old enough to manage that compromise) and it only affects her at school, with the occasional occurrence outside of school. But I do think that the experience highlights just how wide ranging the traits/ needs with Autism can be and that the term itself isn’t descriptive enough - sorry, not sure I’m making sense there!