I Remembered Why I Don’t Tell People I’m Autistic…

[FayetheAspie]

The psychiatrist had told me that she thought the diagnosis for me would be ADHD with autistic features but when the paperwork came back, it had ADHD and ASD both listed and she said that the ASD was probably level 1 but that she could not tell. I think ongoing emotional trauma makes it hard to tell exactly how autistic I am or not. As for the ADHD, she let me know within a few minutes of meeting me that she thought I might have ADHD. I think basically that I have enough autism that it effects how my ADHD presents. Many ADHD people I know are basically workaholics that shift from task to task. My ADHD mixes with autistic features that make me a bit wacky and extroverted in my presentation to others about my autistic special interests and the autism I think makes my hyperactive ADHD present more like an ADHD child that can not sit still and loves to jump, climb, ect.

 

[Judge]

My personal uptake:

"The numbers". That we amount to such a small segment of society that in most cases NTs won't give the possibility of autism a thought, because they likely don't know squat about it, let alone someone in their social orbit who might be autistic. (With of course the exception of those who are aware of autistic people particularly within their own families.)

We talk about our relatively rare neurological profile all the time here. But for the vast majority of society, it's not even an issue. Unless of course one is prone to some kind of visual "tell", but even then most people probably wouldn't think of autism first.

Before stumbling onto my own autism, it was just a word to me. Not something I gave any thought to, particularly given that at the time I had no knowledge of this condition and thus never considered it relative to anyone around me.

To this day no one has ever mentioned to me personally or anyone else I know that I might be autistic. And like so many others, I have learned to keep it on a "need-to-know" basis only.

 

[FayetheAspie]

People have guessed that I was autistic but because of the trait where my eyes automatically latch on to deviations from a pattern (for example one red or yellow leaf on an otherwise green tree grabs my attention and my eyes automatically dart to it), some people mistakenly think hallucination and mistakenly guess schizophrenia.

 

[Jonn]

There are some of us with less obvious autism

Removing the term "Aspie" wasn't helpful.
I still use this label, regardless.
People could revert to "High Functioning Autistic" if that is their thang.

I think political correctness had something to do with its demise.
I am not a PC person, as some may have noticed.

 

[Misty Avich]

Removing the term "Aspie" wasn't helpful.
I still use this label, regardless.
People could revert to "High Functioning Autistic" if that is their thang.

I think political correctness had something to do with its demise.
I am not a PC person, as some may have noticed.

Functioning labels are important. When I read about why autistic people were prioritised for the first covid vaccine it said things like it's because autistic people are less likely to follow the government guidelines, have no sense of danger, prefer to be exempt from wearing a facemask, and due to poor diet, self-care and diet, more likely to spread it or get very ill with it.
But many of us (formerly diagnosed with Asperger's or level 1 or whatever) don't fit that sort of description and can look out for ourselves and understand the government guidelines just like the next person.

I think the reason why I didn't get grouped with the vulnerable people during the vaccine roll-out was because it said Asperger's syndrome on my medical records so they treated me like I wasn't prioritised. Which, to me (not speaking for others) is fantastic. I hate being treated like I'm disabled. I am not disabled.

 

[Jonn]

have no sense of danger,

Holey, moley!
That didn't apply to me!
I hid under the doona for most of the COVID period!

But many of us (formerly diagnosed with Asperger's or level 1 or whatever) don't fit that sort of description and can look out for ourselves and understand the government guidelines just like the next person.

Then that proves I am an aspie.

 

[Judge]

I think the reason why I didn't get grouped with the vulnerable people during the vaccine roll-out was because it said Asperger's syndrome on my medical records so they treated me like I wasn't prioritised. Which, to me (not speaking for others) is fantastic. I hate being treated like I'm disabled. I am not disabled.

Good question. Though if your country's medical establishment (NHS/Lancet) made similar observations as ours, you might have been ruled out as a priority if your medical records indicated that while you were autistic, that you didn't suffer from any outright intellectual disabilities.

"Systematic large-scale evaluations of the extent of infection, hospitalization, and mortality have thus far been limited. Karpur et al used the national private insurance claims database in the US to examine the likelihood of infection and hospitalization among individuals with ASD and found that individuals with ASD and intellectual disabilities are 9 times more likely to be hospitalized following COVID-19 infection."

Challenges of the COVID-19 Pandemic Among Individuals With ASD

 

[Misty Avich]

The way the pandemic affected me was it just made me very anxious and has seemed to have worsened my agoraphobia. Yes I have trouble following rules but I was still able to conform to the rules, just with great anxiety and a bit of anger. Because I hate (written) rules.

I think we've gone off-topic here. Sorry, OP.

 

[Misty Avich]

Good question. Though if your country's medical establishment (NHS/Lancet) made similar observations as ours, you might have been ruled out as a priority if your medical records indicated that while you were autistic, that you didn't suffer from any outright intellectual disabilities.

"Systematic large-scale evaluations of the extent of infection, hospitalization, and mortality have thus far been limited. Karpur et al used the national private insurance claims database in the US to examine the likelihood of infection and hospitalization among individuals with ASD and found that individuals with ASD and intellectual disabilities are 9 times more likely to be hospitalized following COVID-19 infection."

Challenges of the COVID-19 Pandemic Among Individuals With ASD

Often when you're medically known as "autistic" it is usually assumed that you have intellectual disability as well.

 

[Judge]

Often when you're medically known as "autistic" it is usually assumed that you have intellectual disability as well.

That brings up yet another consideration.

In such a bureaucracy (NHS) , who makes such medical decisions/interpretations?

Ironically though it also reflects an outdated diagnosis "Asperger's Syndrome" which does not immediately indicate your level of support or lack-thereof. That I'd see as a problem.

OTOH something like "ASD Level One" may be sufficient to not be prioritized in the minds of non-medical bureaucrats. Indicative of the least required degree of support, holding a job and living independently.

Those levels 1,2 and 3 may have great significance to both the medical and political establishment relative to who gets prioritized and who doesn't. But if it isn't documented as such...ouch.

 

[Misty Avich]

That brings up yet another consideration.

In such a bureaucracy (NHS) , who makes such medical decisions?

I don't know.

 

[Misty Avich]

The psychiatrist had told me that she thought the diagnosis for me would be ADHD with autistic features but when the paperwork came back, it had ADHD and ASD both listed and she said that the ASD was probably level 1 but that she could not tell. I think ongoing emotional trauma makes it hard to tell exactly how autistic I am or not. As for the ADHD, she let me know within a few minutes of meeting me that she thought I might have ADHD.

With me it seems to be ADHD with autism features.

I think basically that I have enough autism that it effects how my ADHD presents. Many ADHD people I know are basically workaholics that shift from task to task.

I'm not a workaholic at all but it might be because I hate repetitive routine and prefer being free and independent. The social side of work isn't an issue for me, just the executive functioning side where you have to do tasks you don't feel like doing and it can bore you rigid or make you appear lazy or unmotivated. I read ADHD can go either way.

My ADHD mixes with autistic features that make me a bit wacky and extroverted in my presentation to others about my autistic special interests and the autism I think makes my hyperactive ADHD present more like an ADHD child that can not sit still and loves to jump, climb, ect.

This is one reason why I get so embarrassed about autism, the way it seems to make us immature or childish or emotionally "backward". I don't want to be that. Society often looks down on people not acting their age, which is why phrases like "grow up!" and "act your age, not your shoe size!" feel like harsh criticisms and I hate people saying it.

 

[Misty Avich]

There's a guy at work (a bus driver) who I'm very sure is autistic. I only see him briefly each day but I still seem to detect autism about him. He doesn't interact with anyone else only to ask a question about work, and nobody really talks to him, and he speaks in a quiet monotone voice and has no facial expressions at all. Others say he often talks to himself quite openly. I found him on Facebook and according to his profile details he'd attended a special school. So I think there may be some autism going on with him, though I bet he's very intelligent.

I seem able to detect autism is guys more than in women, unless a guy has an openly eccentric personality and jokes around and "gets" things.

 

[FayetheAspie]

Often when you're medically known as "autistic" it is usually assumed that you have intellectual disability as well.

Yes, I wish that autism and aspergers had not been combined though I do agree that perhaps the aspergers did need a name change. But it could have had a name change without being combined with another condition.

 

[Judge]

Yes, I wish that autism and aspergers had not been combined though I do agree that perhaps the aspergers did need a name change. But it could have had a name change without being combined with another condition.

I still recall the DSM-V changes which was the same year I came to this online community. I still recall a lot of people here were unhappy with the transition from Asperger's Syndrome to ASD levels 1,2 &3. With many exclusively sticking to their older formal diagnosis.

All compounded by the fact that other medical protocols like the ICD-10 did nothing. Then to hear globally how medical professionals were using multiple protocols making it appear like no one was on the same page. Worse even hearing that some doctors simply chose to freelance a methodology of diagnosing autism.

And then much later to see when the ICD-11 finally adopted something similar, but not identical to the DSM-V.

I still have mixed feelings about the transition to a spectrum of autism. Yet it seems to work when I consider the varying amplitude of autistic traits and behaviors. Though I also recall how much more specific Asperger's Syndrome seemed to be in comparison.

Sometimes I wonder if the intent of the DSM-V was a veiled attempt to admit they aren't sure who or what we are. However I think the world should be on the same exact page, whatever they choose to call it.

 

[Misty Avich]

Yes, I wish that autism and aspergers had not been combined though I do agree that perhaps the aspergers did need a name change. But it could have had a name change without being combined with another condition.

I think Asperger's should be changed to Social Communication Sensory Disorder (SCSD). If it were called that (just like 'ADHD') then I think I'd feel less misled or embarrassed about it and feel more able to come out of the closet about it, on a need-to-know basis at least.

Like I said, I am socially awkward but not enough to fit the autism mold (mould?) but still enough to affect the number of friends I have - although people with more social awkwardness than me seem able to make friends with their NT peers but I think it might be down to lifestyle more than social skills, like Aspies who force themselves to go partying, drinking and smoking weed seem to have more friends than someone like me who feels less impressed by clubs, alcohol and weed.

 

[FayetheAspie]

@Misty Avich Special interests and stimming are part of Aspergers too.

 

[FayetheAspie]

Asperger’s: Symptoms and Signs

 

[Judge]

I've mentioned this before, but there are a number of comorbid conditions that continue to confuse what autism is all about...or whatever one chooses to call it. Yet a couple of prominent ones come to mind:

* Social Anxiety
* OCD
* Assorted sensitivities, allergic responses, etc.
* ADHD

Wondering where such conditions begin or end separately, versus a broader diagnosis of autism ? It still confuses me...especially having been formally diagnosed with a number of classic comorbid conditions. But at a time when autism was barely on their radar.

I wonder how I would handle a medical questionnaire if conditionally asked about autism? When fact becomes more a matter of a medical bureaucracy. Maybe I'll just leave it blank.

 

[Misty Avich]

@Misty Avich Special interests and stimming are part of Aspergers too.

I know but it's not going to list the whole criteria in it's name, just like ADHD ain't called Attention Deficit Hyperactivity Impulsive Disorganisation Inattentive Emotional Dysregulation Disorder.