Is Your Autism Worse Than You Thought?

Post Reply New Topic

I was originally diagnosed with ASD level 1, per the DSM 5, and told that I essentially had what used to be Aspergers. Fast forward four years, and I was having an adaptive functioning test done last week to qualify for services with an agency in town. The doctor doing the assessment asked, “So you were diagnosed with Aspergers essentially?” I said yes, and the test continued. By the time it was complete, she told me, “I’d say you’re closer to the middle of the spectrum than ASD 1, your symptoms and the problems they cause are more severe than what we normally see with Aspergers; the pervasiveness of the sensory problems, the severe self injury and meltdowns, the extent of your difficulty with daily functioning skills, they all point to more moderate autism.” I was surprised, because I’d always figured I was an aspie, not an autie, but this specialist seemed to think otherwise. Have you ever been told your autism is worse than you thought it was?

Never been told, never been diagnosed...but I am beginning to suspect =(

I mean, I do okay at work, since I don't usually need to speak to anyone if I don't want to...but I'm pretty sure anyone who's heard me speak thinks I'm on lots of drugs.

Outside of work, I've turned into a hopeless mess =)

One can be an Aspie, and still have moderate, level 2 autism.

One can be a classical/Kanner autistic person, and have level 1 autism.

KK, can you explain that? Please and thanks

One could have what may be termed “Aspergian” characteristics: Special interests, social awkwardness, rather than reluctance, a high degree of thoroughness in whatever they pursue, a high degree of reluctance to study what doesn’t interest them, clumsiness, a slavish adherence to routine, etc.

Even if a person has a high degree of intelligence, and has the above “Aspie”-type characteristics, this person can still require “substantial support” in their lives, and be quite disabled, in general, by their symptoms. Hence, Level 2 autism according to the DSM-V

Kraftie, I appreciate that. Thanks

I've often felt I might be more moderately functioning.

With out my filter* I cannot even leave the house most of the time. Even with it, I can only last so long with my smell sensitivity and light sensitivity. Luckily Asher (My service dog) keeps people from running into me.

I have memory issues that interfere with daily life.

I have difficulty with even basic math.

Though I had no speech delay, under stress I lose the ability to talk, and I start stuttering sometimes.

I stim nearly all day. Though, I only have two self harmful stims that are rarely used (Skin scratching, biting)

I'm co morbid dyspraxic, with moderate to severe fine motor delay, mild gross motor delay, and a mild balance issue. (basically, handwriting of a toddler and very clumsy.)

My therapist has suggested in home help before, but I refuse it because I don't want more people around, and feel with Asher I just barely make it.

*Device that goes in my ear and slows down the speed of one ear to match the other; almost completely negating my sound sensitivity, it's not well known about and is only made one place in the world, developed for CAPD

Kraftie,

As always, you give great information. This was very educational. I think that, under that description, I would have been far more severe five years ago than I am today, even though I have a AS testing score of 28, which puts me in an in-between place, on the border of Asperger's/NT. My functioning on all levels has improved quite a bit, even though I'm nowhere near having everything the average NT person has. I am least confident of my ability to succeed in the dating/marriage world.

A few months after my assessment when my diagnostic report came in and I had time to reevaluate my life I realized I was quite a bit "more autistic" than I first thought. That realization was shocking and humbling but necessary. It is has meant that I have been much less susceptible to the I am not autistic, just a weak person who faked out myself and my clinician type thinking that so many diagnosed "mild" autistics have.

That reminds me, an ex-GF once did a test for me, since her cousin is a social worker. Granted, it was designed for children, but she used the phrase "off the charts"

Not with autism but with my language. I was shocked to learn mine was profound when I was a kid. I was talking and using sentences and going in monologues because I didn't understand turn taking and topic maintenance was an issue I had. I just assumed it was mild because I was talking and my mom said I talked fine but it was profound. That is more than severe. I also assumed my learning disability was mild too because I have no issues with words and spelling and reading and copying things down but I was shocked to read mine was severe. This was in my IEP from 3rd grade. I was doing school work on my own then and didn't need an aid and I didn't have any work modifications then either. In 5th grade my speech issues was labeled severe and I wouldn't have guessed. My dyspraxia was labeled mild to moderate and that shocked me too because I could tie my shoes, ride a bike, did PE and played sports, I climbed trees and monkey bars, did jump rope, I skipped, I could play hopscotch, and I was still labeled as having moderate dyspraxia. Plus I didn't fit the whole entire profile of dyspraxia. Wow, I must have been a super child.

Initially, 4/5 doctors/psychiatrists noticed the diagnosis I was carefully given after a year (it was obvious to the first one). I had to adjust my thinking that my life trajectory may be completely different than what I very vaguely planned.
I have a few learning challenges, including dyspraxia (which has made me freeze in place until given a new action to do- rarely happens, can cause a me forget for a moment how to pronounce a common word or my mouth says a word-like sound instead...as well as slower fine motor skills if I am in a new or fairly novel situation).
I think my autism is less obvious now, as my social awareness has grown, I am more emotionally stable and have a bit more of an interest in others. I stay at home most days, as it is quiet there. My autism has been viewed as unfriendly behavior in the past, which is why I let certain people know.

My diagnosis is aspergers.
But my real level in my opinion is somewhere between level 1 and level 2. My support level requirement could be as worse as more than level 1, but never as substantial as level 2. Could be level 1.25 to level 1.75.

Especially when I found out about executive functioning is, and how much drawbacks I could and could not afford the whole time.


Seriously. I got aspergers probably because I have the motor skills not to appear off (which is somewhat ironic -- or not), nor clumsy enough that it screws PIQ (that drags up most of my IQ score), nor in need for OT, let alone being trapped in my own body. Hence also affording speech as well.
And language skills to keep up with despite that as a weakness. People from where I live would be very surprised if they found out that my VIQ could be lower than their's. It's just that I could afford it.

Gained Number Post Count (1).
Lose Time (n).

Lose more time here - Updates at least once a week.

No. Im moderate functioning. Im not high or low. I like my life. I just get very stressed sometimes. I see people my age driving and being very independent. Im not ready to drive and I have a hard time tying my shoes. I also have a hard time socializing. I also dislike touch very much and I get very upset when I get touched. I stim a lot too. Im also in a few special education classes. Somedays I really like myself and somedays I feel depressed about who I am