Autism Vs eccentric personality

[BlooDeBloop]

Context: A health care worker suggested my 12yo DS may have asd. He is socially extremely awkward at school but copes in his way and brushes off taunts etc. There are some anxiety issues we deal with. He is certainly quirky. Many of the males on my side of the family can fairly be described as eccentric or oddball (...actually this is a good description of me too 😆).

Question: what is this autism spectrum that potentially includes my DS at one end and on the other includes non verbal or highly violent people needing full time, respite care into teens and beyond? Or even the more common presentation we see on TV, the rocking, meltdown prone, OCD type of person. I just don't see the connection. Depression presents on a scale but one end looks like the other end just more extreme. ASD is highly variable. Indeed, this is reflected by the commonly quoted 'if you've met one person with autism, you've met one person with autism' i.e. no two cases are the same. If none are the same how can we be sure we're dealing with the same thing when we diagnose and talk about autism?

Can anyone explain?

Most people with Autism, the vast majority in fact, present with mild symptoms - what you would call eccentricities.

Eg my oldest nephew has ASD holds down a 300k a year job, is an actual genius, communicates well, can mask very well, has a wife, children, but due to sensory and social overload needs to lock himself in his room for an hour everyday (at the same time) to decompress before he can even say hi to his family without bursting into tears. He can’t wear ties, struggles to tie his laces and so his son often does it for him in the morning and his PA does it for him when he’s in the office. He only eats white food on Mondays. Doesn’t eat at all on Tuesdays.

His brother is more like my dd - regular meltdowns, social anxiety, but appear absolutely NT outside of this. But oldest nephew has a much milder form of ASD than them.

Most people with Autism, the vast majority in fact, present with mild symptoms.

Just because something might be observed as 'mild' by others, doesn't mean it is 'mild' for the autistic person.

"so why have you brought this bright, happy, articulate and interesting child to see me?"

So apparently, I am stupid, Miserable, vague and boring.

FFS 🤦‍♀️

Both my DS are autistic, severe learning disability. 75% of the time they are very happy- as long as their needs are met they are fairly contented.

As their carers, we, on the other hand, are not!

Hmm I think mild is the wrong word there. Your eldest nephew has a lot ofnaccompadatiins to help him function and its quite life affecting from what you say.

Hopefully so

Same here. I don't get it. Nobody kicks up a fuss about the fact that everyone with MS is different, is impaired to a different level, has a different personality, that there's different subtypes, that some of the symptoms can overlap with things all of us experience from time to time and with symptoms of other disorders, or that you can't tell from the term "MS" whether the person is going to be profoundly disabled and in need of a high level of care or externally indistinguishable from anyone else. Nobody complains about asthma being called asthma whether it's a mild, occasional inconvenience entirely prevented by a simple daily inhaler or a deadly dangerous propensity to entirely stop breathing and need rushing to hospital on a regular basis. Of people with schizophrenia, one may be a busy professional with a husband and children, quietly managing a chronic condition, while the other is irretrievably lost in psychosis and will never live a semblance of a normal life, and this is generally understood. I've never heard complaints from people with imminently terminal pancreatic cancer about rodent ulcers/BCCs being referred to as cancer despite only barely qualifying as such. People accept that epilepsy is still epilepsy even if two people with epilepsy don't share a single symptom.

I can understand wanting ways to be able to communicate succinctly and accurately about diagnosed conditions, and needing the language to differentiate people with different presentations and needs, but I don't get this push from certain quarters for a whole separate name, an entirely separate diagnostic category, for a particular subgroup of people who fit ASD criteria. The current state of the research into this area is that we don't yet have enough evidence and understanding to re-divide the ASD diagnosis into discrete categories. Since we're not there yet, though, we do need language to refer to variation within the diagnosis. But I never hear any other group complaining about the fact that a diagnosis covers people with a broad range of difficulties.

Certainly I'm sure the OP's HCP never said that utter bollocks...

It's crazy, isn't it ?

At the end of the lengthy assessment session, the HCP said "so why have you brought this bright, happy, articulate and interesting child to see me?"

DS diagnostic report notes that he is a "bright, cheerful and charming boy" that he is "exceptionally articulate" and that he shared "several interesting facts about himself".

He's still autistic.

Where on earth did you get the idea that autistic people can't be all of those things?

Tbf Ive noticed people do have quite fixed attitudes on how physical disabilities present. Ds also has cerebral palsy and be lost count of the amount of people who’ve told me he can’t have cerebral palsy as he can talk and he isn’t a quadriplegic.

I think the issue is people have very stereotypes ideas of what disability is <proven by the people stating that their relatives autism is ‘mild’ as they can function in neurotypical society>.

I've lost count of the times I've been asked what DS' special power is, apparently all autistics get one, usually followed by "it's completers, isn't it? I bet it's computers... Or maths? Is it maths?" Like there's a higher power handing out consolation powers to make up for the neurodivergence - sorry you got the 'tism, kiddo but here's a copy of Windows 11 and some coding skills, enjoy.

On the off chance that this is genuine- repetitive behaviours isn't neccessarily external stims like hand flapping/ rocking etc. It can be always ordering the same item on a specific menu, going to a certain cafe for a coffee, liking a specific number of pillows or a certain spot on the sofa or sitting in a certain way or wearing the same style of clothes, walking a specific route to school or work, etc.

I think it is because, for people who are successfully living professional, outwardly ‘successful’ lives, being categorised alongside obviously disabled people who cannot live independently would limit their ability to talk about ‘autism as a superpower’ and ‘difference not disability’. Which is clearly a preferred way of framing their experience given the stigma disability still caries.

Meanwhile on the other side, carers of those who cannot self-advocate are worried that if their charges are categorised alongside these independent, vocal individuals it will obscure their charges’ very different needs and impede attempts to secure necessary provisions, which are often scarce and hard-won.

Agree, Whatsthepoint, there's a lot of ignorance…

From people who don't have any particular reason to know much about some specific medical condition, it's sort of understandable (if annoying) that for any given condition they've heard of, they have a simplistic picture in their head of what that condition means for the person who has it, like "people with asthma wheeze when they run and need inhalers but otherwise it's not a huge deal, people with cerebral palsy can't talk well and they use a wheelchair full-time, people with psoriasis just have dry scaly skin on their scalp and elbows", and that kind of thing.

It's hard for anyone who hasn't been to medical school to understand the massive range of how people can be affected by each one of the conditions we're expected to know something about, so we kind of have a shorthand composite picture in our heads of "this is what a someone with type 1 diabetes/obsessive-compulsive disorder/osteoporosis is like, and this is what they have to deal with".

I suppose it's probably inevitable that this will happen with every commonly-known condition, and I think that the "we need a different diagnosis for autistic people with extremely high support and care needs" people are trying to solve the problems they experience as a result of this. They're upset that the simplistic single mental image that "autism" conjured up for people used to be a picture that looked a bit like their child, but now it's often a picture that looks like someone else. But having a condition that presents differently to the stereotypical public perception of that condition is really common, and not a good reason to overhaul diagnostic categories IMO.

Actually I think the triad is social interaction, communication and imagination and then repetitive pattern of activities comes on top/to one side of that.

I've seen the triad in a couple of different ways. Social communication and interaction are sometimes written together!

As well as people not always understanding what the spectum means, quite often people see autism as the whole diagnosis and the explanation for everything- so they assume all of an individuals traits are just an aspect of their autism.
It doesn't work like that, there are lots of linked comorbidities that may be common in many people with autism but are not a trait if autism and as such will not apply to everybody.
Things like epilepsy, anxiety, some feeding issues, sleep disorders, bipolar etc are commonly found in people with autism but they are not (necessarily) a part of their autism.

Similar to learning disabilities, the majority of people with autism do not have a learning disability. I believe it is around 40% that do.
Those who do have a learning disability, that may be mild, moderate, severe or profound it is a seperate diagnosis.
But as a person is a person not just a collection of different symptoms and characteristics that fit neatly into a rigid set of criteria, it is not possible to always seperate the challenges a person may be having and attribute them to specific diagnoses.
Some things like struggling with a change in routine may be able to be attributed to a persons autism but their inability to communicate that distress in a safe way may be down to their learning disability. Similar to how a person with epilepsy may have seizures triggered by extreme stress, that stress may come from a factor impacted by their autism like the stress of having a substitute teacher, but that doesn't mean they are having seizures because they are autistic they have them because they are epileptic and autism is just another part of them.
It all impacts other parts.

The spectrum isn't a sliding scale from 'a little bit autistic" at one end to "very autistic" at the other. It's more like a colour-wheel where each personality takes a different shape due to different degrees of challenges on each axis.

Someone who is able to interact relatively "normally" isn't less autistic, they may be exterting an enormous amount of effort to maintain that facade and may experience other issues which other people aren't aware of if it doesn't affect anyone else.

Yes it's all a bit annoying @OnionBhajis . I wish they would say communication, emotions and imagination - simpler and clearer.

Although I think impairment of imagination is being looked at more closely now as more people who participated in some imaginative play as kids are being diagnosed, having slipped through the net.

And from the other end of things, kids whose play seemed like the 'standard' repetitive activity are often able to explain as they grow up that there was a huge amount of imaginative stuff going on internally that they weren't able to articulate at the time.

People with diabetes all have a relatively easy to understand thing that is common to all people with their type of diabetes; sone aspects manifest in different ways ( how they respond to low or high sugar for example ) but the basic measurable sugar level is there

People with ms may have different types / be in different stages but again there is a simple commonality

With autism the commonality point is lacking or not articulated

I don't think it's right to compare a high flying autistic person with a needs help all their life one as simply being different personalities as a pp just did - tha would imply personality - attitude - can affect how autism affects someone

And the description around social interaction - which relies on a definition or understanding of what it means to be impaired .... what does that mean with regards to social interaction

It is not perfectly clear with a bit of help from your favourite search engine

Ds was described when assessed as around the line for the difference between diagnosed with ASD and "having ASD tendencies". They decided he was just over the line and did meet the criteria for ASD.

What I've found since he got the diagnosis (I initially went for an ADHD diagnosis for him) is that things that I put down to his little quirks, I've had a few lightbulb moments where I've realised they are part of his ASD.

Silly one: If he's going to a new environment or is unsure of himself (even something like going out for dinner somewhere that he hasn't been before) he'll wear his zip up hoody. The hood goes up and the zip is done up to his face. It's his protection. Once he's comfortable it comes off.

I'd also have said there was no repetitiveness/routines. But then I realised he says goodnight to his budgies in exactly the same way each night-and will come down to do it if he's forgotten, or ill or anything else. And that got me thinking. Actually he is quite routine based. He does certain things in the same way and then will be moody if he can't. Things I never would have picked up on.

Another thing is that when he's been masking all day he comes out and has no expression in his voice. If you heard him you'd probably think he was being a moody teenager.
He did work experience, which I know he loved, a few weeks ago. On the way home he told me it was "fine", "did stuff", "can't remember". All said in a monotone voice. Once he'd chilled at home for a bit I did hear more about it, but he needed that break before he could talk about it.

A lot of the things that I would have before said was just "one of his quirks" I realise now is down to his ASD. And some of the things I never even picked up too.
Having the diagnosis has been great for him. It's given him permission to be himself at times rather than trying to mask. He does still mask, and he does still have to work on fitting into some situations, but it means that it gives us a little insight into understanding him, which is helpful for all.

We say someone has cancer regardless if they have stage 1 or stage 4.

Why are people so keen to knock down the more able autistics amongst us?

There are 3 levels of autism in the DSM V. Your DS sounds like Autism Level 1, which used to be called Asperger’s. I guess before that, people would have been described as eccentric