From a neurotypical's perspective

[Rachie]

That infographic is a very simplified one. It's sometimes useful to give people simplified information because it's easier to understand the basics - but sometimes, things get simplified too far.

Another thing to remember is what audience the simplified information is aimed at, because things might be deliberately missed out or simplified because the author thinks it's something that isn't important for their target audience to know.

With that infographic, it seems to me that the target audience isn't autistic people aiming to understand their diagnosis, or professionals trying to diagnose autism - it's more aimed at the general population who might find themselves dealing with an autistic person. So it's aimed at describing what autism might look like from the outside. For instance, I'm level 1, and that description is pretty accurate for how I present in general day-to-day life. However, if you get to know me, you'll find that I definitely have "high interest in specific topics", it's just that I don't talk about them unless it comes up. Likewise, I do have some repetitive behaviours, but not such that it's noticeable day-to-day unless you're paying close attention.

The diagnostic criteria for autism are the same regardless of whether it's level 1, 2, or 3 (Clinical Testing and Diagnosis for Autism Spectrum Disorder) - what makes it Level 1, 2 or 3 is the severity of the symptoms.

When you go through the diagnostic procedure for autism, they're not just looking at how you present day-to-day, doing your best to "act neurotypical". They're actively aiming to find the "real you", underneath any tricks and techniques you may have learned to disguise or deal with your autistic-ness. This gets more important the older you are, as you may be "masking" without knowing it in some ways, because you have learned to do/not do certain things by trial and error and now they are just part of how you present to the world.

So during a diagnostic interview, they won't just be listening to what they say, they'll be evaluating how you say things and actively watching what you do.

Diagnosis is a lot more complex than this. It's also important to remember that:
- Autism and ADHD are spectrum disorders, and an individual will often have more significant problems with some areas than others.
- For many people (especially adults), they will have learned ways to cope with any deficits they have which results in those deficits not being as noticeable (which is the whole point!). As an outside observer, you may not be able to spot or know about the training/practice/techniques the person uses to disguise or work around their deficits.

Writing a long post on a forum is a good example of how you only see the end product, not the process that went into it. There may have been a lot of re-drafting and pulling-back of wandering attention in the process... but all you see is a tidy post and not all the blood, sweat and tears that went into it.

For example, in day-to-day life, I have a reputation for being exceptionally well-organised. ("Forget? You? You never forget anything," said someone recently). What they don't see is the amount of time and trouble I take to seem that way. I know that if I don't put every single thing on my to-do list immediately then it will go out of my head and won't get done. I can't remember more than two instructions of any list (the first two or the last two). So I have to write it down. If a task is not on my list, I won't start it even if I do remember it (sometimes not even then). If I don't have a nice visual representation of all the projects I'm dealing with, I can't remember them and something will slip through the cracks. My appearance of being well-organised is actually an over-correction of a certain amount of executive dysfunction. But that's not what people see.

Thank you for this information Tiffany Kate.
I was conerned a bit when I read about the Level 3 areas as some people live alone and have to be responsible for themselves and I didn't wish more than I what I was measured at. Some time out it is what I thought and try and forget and move on.
I think this the second time I seen a mention of rocking etc in Level 3 diagnosing. Perhasps they both use the same source.

Moving on
I have read some conversation in this thread about eye contact.
Now the ADOS reads quite strange don't look at the examiner too much or then you score highly in at least 1 lol.

 

[vergil96]

Likewise, I do have some repetitive behaviours, but not such that it's noticeable day-to-day unless you're paying close attention.

There is also the factor of how much of a pressure to conform someone feels. Reading this forum, I find it surprising that so many people get negative feedback for behaviours that in my experience are completely normal. The criticisms of e.g. looking at someone's nose or forehead, of stimming, of preferring to do something always the same way - it's bizarre to me. Maybe forums attract people who feel excluded in their daily life?

I think this the second time I seen a mention of rocking etc in Level 3 diagnosing. Perhasps they both use the same source.

Originally level 3 involved intellectual disability. It's the descendant of classical autism. As above, I don't see why rocking is something only someone with intellectual disability would do. In my opinion, there is something wrong with psychology as a science, because it pathologises behaviours that aren't harmful, but different. I have never felt bothered by my stimming if it's not harmful and I don't see the point. It feels good, it helps dissipate extra energy, what's the problem? Who are they to say what is right and wrong and to fortune tell why someone does something they do? Perhaps the psychologists who constructed graphics like this one operate under the assumption that the autistic person lives in an environment that values neurotypical behaviour and they "underatand" that most people would "see it negatively" (quotation marks, because it's not true). People with intellectual disability do lack an awareness of how others perceive them and what kind of impact they are making with their behaviours, so I see how the psychologist might arrive at the conclusion that abnormal behaviour is because someone is "unaware" or that they wouldn't do it if they were "aware", but the logic is flawed, because nobody cares about people rocking or hand flapping or whatever. Especially in recent years stimming has become normalised.

 

[Tiffany Kate]

I have read some conversation in this thread about eye contact.
Now the ADOS reads quite strange don't look at the examiner too much or then you score highly in at least 1 lol.

Yes - apparently differences in making eye contact (usually less eye contact) is so common in autistic people that it can be used as quite a good marker for diagnosis. The ADOS marks 1, 2, or 3 for how significant the difference is between the person being interviewed, and neurotypical eye contact.

It's one of those things that neurotypicals just do without thinking about it. And a lot of autistic people just don't.

As above, I don't see why rocking is something only someone with intellectual disability would do. In my opinion, there is something wrong with psychology as a science, because it pathologises behaviours that aren't harmful, but different.

Society is moving on (well, in some areas). There is starting to be more of an appreciation that forcing people to "act normal" for the comfort of those around them isn't the way to improve those people's mental health.

There's also, I think a move towards realising that - as you point out - some behaviours may not comform to the majority, but they're not a pathology. For instance, homosexuality is no longer a pathology.

When it comes to "pathologising", though, there are two ways to look at it. Sometimes, it's important to recognise that even though a person's behaviour (which derives from their neurology or mental state) isn't hurting anyone, it still deserves special consideration/accommodation. Linking it to a pathology that the person actually has can help emphasise to society in general that the person can't "just stop doing that". This is where disability accommodations come from: your employer may be required to make an accommodation for whatever it is because you have that pathology, when they wouldn't if it were just a habit or preference.

Then there's the negative side, as you point out, that "pathologising" something can be an easy way to think of the person who has the condition as less valuable as a human being.

 

[vergil96]

your employer may be required to make an accommodation for whatever it is because you have that pathology, when they wouldn't if it were just a habit or preference.

Well, do you have experience that it actually works? Because I don't. If your manager is a jerk, they are a jerk and won't accommodate no matter how important your doctor is. If they're a good person, they will accommodate if you ask for it and won't ask why.

Linking it to a pathology that the person actually has can help emphasise to society in general that the person can't "just stop doing that".

Excuse me, but who on earth behaves like that? That is very little empathy, it's not normal. I mean, mayby common, but it's a pathological mindset. Just like driving when drunk and domestic violence. Homophobia, xenophobia. Not worth arguing with, but worth being stigmatised.

 

[Rachie]

Yes - apparently differences in making eye contact (usually less eye contact) is so common in autistic people that it can be used as quite a good marker for diagnosis. The ADOS marks 1, 2, or 3 for how significant the difference is between the person being interviewed, and neurotypical eye contact.

It's one of those things that neurotypicals just do without thinking about it. And a lot of autistic people just don't.

Thank you for the perfect explanation to this, it was will like we will award this in one box and then use the other box if you look at me to this too much I shall. I am glad I went for my test with knowing anything really before I went. Although I met one tester it worked out...used to be my pyschologist as well. The other one I doubt I looked at her more than a couple of times at the most and it could look odd as wel lol who knows. I know even before the test my goodness my eye contact was off just with me and my self timer and I posted it to this forum as I didn't wish to at first in a thread called New Stims.

https://www.autismforums.com/threads/new-stims.47107/

 

[vergil96]

I'm leaving this thread. All of that comes down to ableism. I am disabled, I'm profoundly hard of hearing. I have other conditions too. Catering to ableism isn't something I tolerate. Don't ping me here please.

 

[Mary Terry]

If you are an NT.

Most NDs would like to fit in.
Unfortunately you seem to lack the insight necessary to understand that what is simple for NTs is not necessarily simple for those on the autistic spectrum.

Information overload can result in emotional meltdowns.
Saying don't get emotional is not a working solution for many of us.


Interesting perspective you have.
Interesting assumptions.
But we will have to agree to disagree.

Eye contact is not easy for all NTs, either. Some NT people are so shy and insecure that they struggle with looking others directly in the eyes.

 

[Mary Terry]

Hmmm, am I one of the few people who understand tangled plots and follow them with interest? Lol

I don't seem to have a problem with it, either, if it is a program that I like or am interested in. But I do use close captioning when I'm watching BBC programs because the accents can throw me off and make it harder for me to follow.

 

[Mary Terry]

I feel self-conscious when wearing sunglasses on a cloudy day or in winter, as I feel like people are judging me even though I'm not looking at them I can still sense it.

You're young. When you get old like me, you won't care what other people think. Wear sunglasses whenever you want! What are they going to do? Snatch them off your face?

 

[Tiffany Kate]

Well, do you have experience that it actually works? Because I don't. If your manager is a jerk, they are a jerk and won't accommodate no matter how important your doctor is. If they're a good person, they will accommodate if you ask for it and won't ask why.

Yes, I do.

Of course decent managers will accommodate with or without any diagnosis, for the sake of making their department more efficient and their staff happier as far as they can. But that only goes so far - for instance, if the "accommodation" you need is somewhat troublesome or might affect someone else, you are less likely to get it if it's regarded as a preference rather than an adjustment for a disability. I have one of those managers at the moment, and she's pretty helpful.

Looking at it from the manager's side, if you are asking for something that means giving extra work to someone else, or inconveniencing them in some way, it's a lot easier for your manager to grant your request if it's based on a disability making that task objectively harder for you than for someone without that disability, rather than just a preference.

One of my colleagues has a much-less decent manager. She is having to use her diagnosis (mental health and ADHD) to force her manager to give her the accommodations she needs as she wouldn't get anything otherwise.

If you have a totally unco-operative manager, what happens in the real world will depend on the type of organisation you're in (and the attitude of the Human Resources department, if any) and the country you're in and how its laws are enforced.

I'm in the UK, and working in a large organisation with a reasonably lively fear of the consequences (financial and reputational) of being caught refusing to comply with equality legislation. Managers are therefore encouraged to comply. If a manager does refuse to comply and it all goes nuclear, there have been significant compensation awards made at employment tribunals for people whose disabilities were not accommodated, or were harassed due to disability. Just last year, someone was awarded nearly £5 million for disability discrimination (ADHD and PTSD).

 

[Mary Terry]

There is also the factor of how much of a pressure to conform someone feels. Reading this forum, I find it surprising that so many people get negative feedback for behaviours that in my experience are completely normal. The criticisms of e.g. looking at someone's nose or forehead, of stimming, of preferring to do something always the same way - it's bizarre to me. Maybe forums attract people who feel excluded in their daily life?


Originally level 3 involved intellectual disability. It's the descendant of classical autism. As above, I don't see why rocking is something only someone with intellectual disability would do. In my opinion, there is something wrong with psychology as a science, because it pathologises behaviours that aren't harmful, but different. I have never felt bothered by my stimming if it's not harmful and I don't see the point. It feels good, it helps dissipate extra energy, what's the problem? Who are they to say what is right and wrong and to fortune tell why someone does something they do? Perhaps the psychologists who constructed graphics like this one operate under the assumption that the autistic person lives in an environment that values neurotypical behaviour and they "underatand" that most people would "see it negatively" (quotation marks, because it's not true). People with intellectual disability do lack an awareness of how others perceive them and what kind of impact they are making with their behaviours, so I see how the psychologist might arrive at the conclusion that abnormal behaviour is because someone is "unaware" or that they wouldn't do it if they were "aware", but the logic is flawed, because nobody cares about people rocking or hand flapping or whatever. Especially in recent years stimming has become normalised.

Well said. One of my best friends who is NT has constant stims. He jiggles his leg all the time.

 

[Rachie]

Eye contact is not easy for all NTs, either. Some NT people are so shy and insecure that they struggle with looking others directly in the eyes.

I feel at least there is some truth to this but I won't agree as such just yet.
I will to be shy can come to any human being no matter where on a spectrum or not.
People can have variability about themselves....someone on a Sunday may be a bit more sociable than on midweek job on a Friday for example.
Rav Wilding I heard diagnosed himself from a Cambridge department on a TV show. Looking at him seemed so bright as the judge you could never guess by looking at his body actions. Seemed carbon the judge...You can learn to copy and I am not questioning him. I wouldn't have not known by his body movements.

For real some of the celebrity says they have a panache for going out and not wanting to talk....just the possibility of something difference.

Some people are also more extroverted than some...

Puzzling but needed to be raised.
People who go out with slow and you return they are fast and didn't even look for you, and you wondering my speed is the same as I left home and I am eager to go home as well. Human beings flounder me at times and leave me wondering.
I know what I was at least at the start so no confusion is with me.

 

[Boogs]

... but there are definitely times when it would be much easier to be neurotypical.

True enough.
But easy is often uninteresting, unchallenging, even boring, and a life like that makes (my) autism seem preferable! Granted when in the depths of depression I'd probably answer differently, but that's depression for you.
And worse, the idea that I too could be like that if I wasn't autistic, and not even be aware of what I'm missing. It's fine that we all live a lie in one way or another (no option on that), but not to have an inkling of all the things so many incorrectly take for granted without a second thought, well, aren't there enough people doing that already? Does the world need yet another one?

Of course decent managers will accommodate with or without any diagnosis, for the sake of making their department more efficient and their staff happier as far as they can. But that only goes so far - for instance, if the "accommodation" you need is somewhat troublesome or might affect someone else, you are less likely to get it if it's regarded as a preference rather than an adjustment for a disability. I have one of those managers at the moment, and she's pretty helpful.

Sadly my experience of managers is that 'decent' isn't the most prevalent, in fact sometimes the opposite (some recent research in the UK found children with school records of bullying tended to progress further up their career structure regardless of qualification or other measure). Many will have formed a bad (and inaccurate) opinion of an autistic member of their team before they're aware of the autism, and many will actually (usually passive/aggressively rather than overtly) continue to bully that person, sometimes because to stop doing so is admitting to themselves they were being a bully up to then. My experience is many will victim blame rather than admit to themselves they were wrong.

 

[Rachie]

My poor dad alerting me as well on this.

If you went to your benefit assessment barely walking in just about and then going seen down the road going faster they likely think what and start an alert on you.

Thank goodness by an large i'm same in and out.

I called out her name imagine and she jumped, bingo looking at me straight in the eye...note start taking again.

So anyone going for an assessment on my report I read this bit we noticed she did this in the waiting area till I left the building and I was so surprised.

 

[Jonn]

And because they are the majority, they get to decide what the cultural "normal" is and call everything else "abnormal".

Agreed.

If people on the spectrum were in the vast majority, social rules/expectations would be quite different, surely.

 

[Misty Avich]

I do understand and know the NT rules but if I do anything NT then I get criticised - usually by other Aspies.

 

[Outsider]

I have met a number of ASD 1 people and didn’t find anything wrong about them. They all are polite, make proper eye contact, express solid judgment, etc. This is why I see autism as a neurological condition similar to dyslexia, not a mental disorder.

By definition, mental disorder implies distorted perception of reality, which is a not a hallmark of ASD 1.

As a data analyst investigating effects of medications on mentally ill individuals, I have met patients diagnosed with schizophrenia. I ‘m not going to describe their symptoms, but if you have had an opportunity to have a conversation with at least one schizophrenic, you know what I’m talking about.

The only difference between NTs and autistic people that I have observed is that the latter react emotionally to situations that NTs consider neutral and not calling for strong reactions.

None of my coworkers, past and present, are autistic, so I don’t know how NT employees react to their autistic counterparts’ display of emotions (for me this is not a problem). However, I suspect that some autistic people get railroaded at their workplaces because of their reactions to mundane situations. Then again, I might be wrong about that.

I’m not sure how to classify ASD 3 individuals; I know that in the past they were diagnosed with developmental disabilities.

As for ASD 2, I think that their neurological condition is more pronounced than the one of ASD 1.

The is a lot of misinformation about autism, and I think I know its sources. I will return to this topic in the near future.

 

[Boogs]

I have met a number of ASD 1 people and didn’t find anything wrong about them. They all are polite, make proper eye contact, express solid judgment, etc. This is why I see autism as a neurological condition similar to dyslexia, not a mental disorder.

How do you separate neurological from mental, when mentality is based on a neurological substrate?
What you are most likely seeing are the abilities of a fraction of ASD's to be able to mimic social signalling of various forms.

As for ASD 2, I think that their neurological condition is more pronounced than the one of ASD 1.

Not necessarily. One may have two or three very extreme recognised conditions, another may have six or eight milder one's, and both may not have the same individual conditions, and yet both be in the same ASD group. I don't think the current system of diagnosis has much to do with the individual conditions that can put a person in the autistic spectrum, but rather to do with the outcome of having one or more of a class of neurological condition.
I don't think of autism as a condition really, but rather a class of symptom caused by a class of varying and variable neurological/developmental conditions.

You're making too much out of the different groups, 1, 2 and 3, imho. I think these are far more focussed on diagnosing who needs appropriate therapy and what sort of therapy (and support), not on specific symptoms in themselves.
The type, number and severity of symptoms can provide an almost infinite range of possibilities (try throwing 6 20-sided dice and see how many combinations of results you can get) - these don't just slot into one of three categories, we're people like you, and infinitely variable like you, the categories are medical devices to provide the best levels of care to the most needy in an environment of insufficient resources - in other words they are a way of making something incredibly complex into a simpler form to allow an attempt at fair distribution of services to those most in need (just like with almost every other malady, but more complex and less well understood and early efforts rarely hit the nail on the head in medicine).

 

[Misty Avich]

It seems a lot of people define the three levels by matter of opinion. Some think the levels are based on how intelligent one is. Some think they're based on how many friends they can make. Stuff like that.

But I think it's just down to common sense. Cancer also comes in levels or stages, but every patient's body still displays the symptoms of the disease differently. But having stages/levels of cancer helps in medical terms, even if someone with stage 1 cancer may need more chemotherapy than someone with stage 3 cancer. But the levels are still there for a reason and do exist even if it's not able to be explained in black and white.

So it works similar with the autism spectrum. While everyone on the spectrum is different and may need different levels of needs and support, the level system is still helpful and still exists. I'm definitely level 1, there's just no arguing with that.

So yes, we need levels in every spectrum of any condition a human can have.
No level's a one size fits all though, I do know that. But that doesn't mean levels don't or shouldn't exist.

 

[Jonn]

The type, number and severity of symptoms can provide an almost infinite range of possibilities (try throwing 6 20-sided dice and see how many combinations of results you can get) - these don't just slot into one of three categories, we're people like you, and infinitely variable like you,

Agreed.

Black and white thinking is erroneous thinking.