What is ASD 2 like?

[BrokenBoy]

I keep seeing and hearing about cases of ASD 1 and sometimes ASD 3 online but I have never known of any ASD 2 cases except for this one user on the forums who I forgot the name of mentioning that he was diagnosed with it in his intro post.

What is living with ASD 2 like? What distinguishes ASD 2 with the other levels of Autism? I'd be interested if someone here could tell me what Autism Spectrum Disorder 2: Electric Boogaloo is like.

 

[Ella Spell]

Hi,
I'm diagnosed Level 2 Autism. I'm not sure how to answer because I don't know what Levels 1 or 3 would be like, and I have nothing to compare myself with. This is my RDOS score. I also got 48/50 on the AQ test. Of course there were hours of tests but these are the easiest to show you. Do you have specific questions? I'd be happy to try and answer.

 

[Fino]

Here's level 2, from the DSM:

"Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.

Inflexibility of behavior, difficulty coping with change, or other restricted/ repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/ or difficulty changing focus or action."

 

[dragonfire42]

All right, I’m not very good at answering broad questions like this, but I’ll give it a try.

I was actually diagnosed with Asperger’s syndrome back when that was an official diagnosis and was never given a “level,” but based on descriptions and the fact that there seems to be a big difference between me and many “high-functioning” people, I’m guessing if I was re-assessed I’d be diagnosed with level 2 ASD. Not entirely sure what’s because of my autism, what’s just me, and what might be due to something else, though.

Let’s see, biggest differences... In my social skills group, where most of the participants seem to be “higher functioning” than me, I’m the only one who obviously stims the whole time. People almost a decade younger than me already have jobs and are looking at living on their own, but it’s entirely possible that neither is possible for me, making a lot of the stuff they cover irrelevant to me.

I have selective mutism, which I think is probably tied into the autism/social anxiety - actually, it feels like I have two different ways of being unable to speak, and one is more like extreme social anxiety, where I get so nervous I’m literally incapable of forcing my vocal cords into action, and another where I pretty much can’t form a coherent sentence even in my head, which seems more like an autism thing.

Sensory issues are a huge thing for me. I have major issues with getting wet and with getting out of water I’ve been submerged in long enough to get accustomed to it. This includes baths and showers, I use a wet washcloth and soap for my body and my mom washes my hair in the kitchen sink while I mostly shut down because of sensory overload. I end up mostly to completely shut down every time I go to a store or restaurant because of overstimulation, although now I have a service dog who helps that not happen so readily. In college, the fire alarms in the dorms were so horrible with the noise and flashing lights (and crowds of people as everyone poured out of the building) that I’d still be shaking half an hour after we were let back in. Late summer is horrible for me because of the cicadas, they are annoying at best indoors, and if I’m foolish enough to step outside while they’re busy buzzing, it is literally painful even with covering my ears or wearing noise-cancelling headphones.

On a related note, I’m also completely incapable of filtering out “background noise.” Every noise requires just the same amount of attention as far as whatever part of my brain is concerned, and I can’t convince it otherwise.

Speaking of attention, I’ve recently realized that I have an overwhelming need to know about absolutely everything about what’s going on around me, which I typically use my hearing for (except in a car, I’m watching out the window as well as taking in what’s happening in the vehicle - that’s part of why I really don’t think I should drive even if I can eventually get a license, because my brain can’t just focus on the road and “tune out” everything else outside, it’s all equally important to my brain and it will focus on things it shouldn’t be while driving no matter what I do. ). This means if I try to use earplugs or noise-cancelling headphones to deal with noises that are a problem for me, I usually freak out because I can’t monitor my surroundings properly.

I also have trouble keeping up with daily tasks like brushing my teeth, cleansing, and even eating. And I have an annoying tendency to just turn alarms off, go back to finish up what I was doing, then forget that I was supposed to do whatever the alarm was supposed to remind me about, so they don’t work reliably for me.

That’s what I could think of off the top of my head, I’m happy to answer any questions about this or anything I forgot to cover

 

[Ezra]

It varies from person to person. Most that I know of are verbal and can operate fairly well. But most I know of are obviously autistic as opposed to those who are more able to mask and blend in better.

Some I know of started out as level 3 severe and had developmental breakthroughs, usually around 8 years old. They usually need a degree of being taken care of and have less independence.

Some others I know of who started out as level 2 are more independent and can hold jobs and drive.

There are a lot of different factors at work that put a person in the level 2 catagory.
But most I know of are quite litterally somewhere between being mildly autistic and severely autistic.

Most classic level 2 people I know of were diagnosed at a very early age and have always known they have autism. And those around them; family, neighbors, teachers etc know they are autistic (or those in the general public who are unfamiliar with autism can tell there is "something wrong" with them. That that they obviously have some sort of "mental disability" as they might call it).

Most level 2 I know of required special education.

 

[Crossbreed]

@BrokenBoy , there is no single set of traits to determine which severity level one has. Rather it is an estimation by the neuro-psych specialist about how much support the person needs.

• 1s need minimal support.
• 3s need major support.
• 2s need support somewhere between the other two.

As others have pointed out, 2s & 3s require special education [a.k.a. short-bus autism].

My ASD3 daughter [26] has

• the neurological development equivalent to an 18mo NT (who has not yet spoken), and
  
• a legal guardian (me).

My ASD2 son [32] has

• the neurological development equivalent to a 6-10yo NT,
• OCD,
• schizophrenia,
  
• an infatuation with self-harm, (not out of self-hate)
  
• very poor executive function, and
  
• a representative payee to manage his benefits. (They see to it that his monthly bills are paid before sending the remainder of the money to him.)

Since he can express his will in his life choices, he does not require a guardianship. He lives in a supervised apartment, but is free to come & go as he pleases.

 

[SusanLR]

I was also diagnosed when it was called Aspergers and numbers had not yet been assigned.

I ask my therapist if I were diagnosed now, what number would I be.
I don't think a 3, but, I feel I have more problems than a 1.
She pulled up a chart with symptoms on the computer and read them to me.
I said I fit all of the catagory 2 except for intellectual developmental problems.
So what would I be? A 1.75 ? I ask her.

She said she didn't feel I needed to go through the test to find out as it is very long and knowing that
exact number wouldn't be of much help at my age. Had it have been known when I was young, it would
be worthwhile. But, at 63 it really doesn't matter that much, and agreed I wasn't a 3.
She said it would be hard to put an exact 1 or 2 due to the complexity of my neurodiversity.
As far as the learning and intellectual part I would be considered a genius, but, with limited social
interactions, intiation and abnormal responses, difficulty coping with change to the point it
interfers with everyday life and needing some help as total independence is impossible and has
been all my life, yes, the 2 catagory traits fit best.
Also a lot of sensory issues.
So I guess 1.75 is a good guess. I don't really like the change to just 3 number levels.

 

[Ezra]

@BrokenBoy , there is no single set of traits to determine which severity level one has. Rather it is an estimation by the neuro-psych specialist about how much support the person needs.

• 1s need minimal support.
• 3s need major support.
• 2s need support somewhere between the other two.

As others have pointed out, 2s & 3s require special education [a.k.a. short-bus autism].

My ASD3 daughter [26] has

• the neurological development equivalent to an 18mo NT (who has not yet spoken), and
  
• a legal guardian (me).

My ASD2 son [32] has

• the neurological development equivalent to a 6-10yo NT,
• OCD,
• an infatuation with self-harm, (not out of self-hate)
  
• very poor executive function, and
  
• a representative payee to manage his benefits. (They see to it that his monthly bills are paid before sending the remainder of the money to him.)

Since he can express his will in his life choices, he does not require a guardianship. He lives in a supervised apartment, but is free to come & go as he pleases.

The age analogy is a good way to put it. I fit into the 6-10 yo slot myself. It depends on what area in life is involved in that span.

Language wise as far as written language, I became advanced. Even though I did not really learn to read until I was about 10 yo.

But I have a lot of difficulty talking and mostly only say single words. Or will say something like "yeah, okay" when asked a question.

Like say a 10 yo I'm not very good at preparing meals. I need to be checked up on to make sure I am brushing my teeth and taking care of hygiene. Make sure I am eating properly and took my vitamim and medication. Make sure I am dressed properly. Sometimes I am good at this and other times I need assistance.

I myself am a "flight risk" and get lost easily, so I can not come and go as I please. But I am usually able to get around alright without intervention. Other times I need to be stopped from walking out into traffic. That will happen when I am so preoccupied I do not take in my surroundings.

Intellectually I fit my age and maybe beyond in some areas. But I am also learning disabled and am way behind in some subjects. And I am a slow learner and difficult to teach regarding various subjects.

 

[Ella Spell]

Here's level 2, from the DSM:

"Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.

Inflexibility of behavior, difficulty coping with change, or other restricted/ repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/ or difficulty changing focus or action."

Yes, that's me. My verbal was 25th percentile. Non-verbal 5th percentile. Marked social impairments even with supports. Limited social interaction. Very narrow interests. Very inflexible. My restrictive / repetitive behaviours are off the charts and definitely noticeable. I stim 24/7 even in my sleep, and have profound Sensory Processing Disorder which interferes with all aspects of daily life. I'm face blind to an alarming degree and had the lowest score my doctor had ever seen on the "reading people's eyes" test. My empathy quotient score was quite low, but I can't remember it. I think it was 13 or 15. I have very limited spatial and visual memory. I can't multitask and I need a clear set of rules to understand what I'm doing.

I have significant alexithymia, agoraphobia, difficulties with executive function, and comorbid conditions of combined-type ADHD, Selective Mutism, Major Depressive Disorder, General Anxiety Disorder, Panic Disorder, and Complex Post-Traumatic Stress Disorder. I'm in fight / flight mode most of the time if not in sensory shutdown. Oh, and I also had a stroke.

Emotionally, I am still an adolescent at max.

I work with Occupational Therapy, Neuropsychology, Neuropsychiatry, Social Work, and Trauma Psychology on a regular basis for coping skills.

 

[Ezra]

It is interesting to me how usually a person's level of autism does not really present itself in posts as far as communicating. I have seen that even with level 3 people.

 

[Ella Spell]

It is interesting how usually a person's level of autism does not really present itself in posts as far as communicating. I have seen that even with level 3 people.

Very true. It goes to show that Level 2 can still have high IQ and be very intelligent. At the same time I've faced a lot of judgement and ableism from people who don't see the disconnect between IQ and functional abilities. People's expectations for me are often too high, especially online when they don't know the real me. To the other extreme, some professionals assume I'm not smart because I'm Level 2. I feel like I spend a lot of time having to self-advocate or defend myself by explaining that my abilities are all over the map, and I'm struggling in many ways people don't see.

 

[PastelPetals]

For me I think I seem to others if I can mask well enough like I am level one or maybe just an "odd" NT but that is only due to my verbal skills.

I struggle with understanding directions, making and keeping friends, academic tasks, remembering to do some self care things, sensory sensitivities. I stim a lot if not all the time etc. I relate a lot to @Ella Spell . I spend a lot of time trying to make people understand.

As @Crossbreed said really there are no set traits just a need for support higher than 1 and lower than 3 so one day I will gain more independence it's just that for me it goes slower and in my case I most likely will never be able to seek higher education or things like that. I also scored much more "severely" for restricted interests and behaviors and more moderately for social skills (and more mild for basic stuff like manners and saying hello) so that is how I am but not everyone is like that.

It also complicates things that I have many comorbidity like anxiety,ocd,learning disorders, and dyspraxia

I think some people overlook speech in level 2 as while I can speak just fine when calm sometimes my mind goes blank or my mouth won't move. Often when I am upset or overwhelmed I can only really express things one or two words at a time and that can get it the way of getting my needs met. Another is I have trouble understanding directions sometimes and people can see that as willfulness not lack of understanding.

I was diagnosed with level 2 at 14 and at the time I thought they must be wrong I was level 1 but the more I understand autistics are not a quilt of stereotypes and instead their own people and that it's ok if I need more help and that it's ok to not fit the mold and still need more help than the guy on tv who seems "way more autistic" I feel that level2 is right. Also level2 is not super descriptive as mentioned in this thread there is not really "more" or "less" only "able to do this" and "not able to do this" I know people less verbal who are much less confused all the time like I am so there will never be a concrete answer.

 

[Ella Spell]

I think some people overlook speech in level 2 as while I can speak just fine when calm sometimes my mind goes blank or my mouth won't move. Often when I am upset or overwhelmed I can only really express things one or two words at a time and that can get it the way of getting my needs met. Another is I have trouble understanding directions sometimes and people can see that as willfulness not lack of understanding.

I agree. I have always had difficulty with receptive and expressive speech. I attended speech therapy as a child and now I seldom speak fluidly unless with a few trusted people. I have difficulty following instructions and processing what people say quickly enough to engage in conversation or use a telephone. I can't watch movies or television very easily and I even get confused on YouTube tutorials. I need instructions in sequential written form with no diagrams or video if I'm going to complete a task. People see me as rude or haughty because I tune out so easily but I'm really just overwhelmed, or trying to process the words and my emotions (because of alexithymia).

 

[Jenisautistic]

Inserting my cringe worthy video here I made on being in the middle of the spectrum here

I was diagnosed as ASD Moderate with intellectual impairment

my brain is being a bit selectively mute at the moment So if I can add anything else and I’ll add it later

 

[Ezra]

Inserting my cringe worthy video here I made on being in the middle of the spectrum here

I was diagnosed as ASD Moderate with intellectual impairment

my brain is being a bit selectively mute at the moment So if I can add anything else and I’ll add it later

I have seen some of your videos over the years, and to me you are one of those who is obviously autistic. But to me that does not equal anything negative. To me it is perfectly natural.

 

[Progster]

I have a question and I think this thread is a good place to ask it it: If a person was already diagnosed with Asperger's prior to the DSM5 changes, does this automatically mean that they are now considered to be ASD1?

 

[Sarah S]

I have a question and I think this thread is a good place to ask it it: If a person was already diagnosed with Asperger's prior to the DSM5 changes, does this automatically mean that they are now considered to be ASD1?

As far as i can understand this you automatically go up to ASD 1 (in youre case ) & those previously Moderate autism goes up to ASD 2 and as in my case i was diagnosed prior as well so for me ASD 3

Same as you dont loose youre old diagnose. So if you are once diagnosed with Asbergers you will have that still even if criterias change.

 

[Sarah S]

Reg all this levels for ASD there is also an ongoing debate on the many flaws in this criterias in said different levels and how inaccurate they all are and the problem in trying to pin point just what criterias should be in said described level. So i wouldn't be surprised if the descriptions and the criterias will be changed again.

In my case i fit many but NOT all of the described criteria to be a level 3 and im pretty shore this goes for most of us regardless our diagnosed levels that we have some from all of this levels and in different times & situations.

 

[Ezra]

Reg all this levels for ASD there is also an ongoing debate on the many flaws in this criterias in said different levels and how inaccurate they all are and the problem in trying to pin point just what criterias should be in said described level. So i wouldn't be surprised if the descriptions and the criterias will be changed again.

In my case i fit many but NOT all of the described criteria to be a level 3 and im pretty shore this goes for most of us regardless our diagnosed levels that we have some from all of this levels and in different times & situations.

I do not see it as an exact science at all. It is a case by case thing. There is no one size fits all. And then corresponding comorbids make it even more individualistic. I know you know that, I am just stating it for the record.

 

[Progster]

As far as i can understand this you automatically go up to ASD 1 (in youre case ) & those previously Moderate autism goes up to ASD 2 and as in my case i was diagnosed prior as well so for me ASD 3

Same as you dont loose youre old diagnose. So if you are once diagnosed with Asbergers you will have that still even if criterias change.

I see this idea that all people who previously had an Asperger's diagnosis should automatically be recategorised as ASD1 as flawed, as Asperger's can vary a lot in traits and overall severity... I've seen some members here who were diagnosed with Asperger's who need a lot of help, who cannot live independently as adults and live in supported accommodation, for example, and surely are ASD2 - the only reason that they were initially diagnosed with Asperger's as opposed to autistic disorder being that they had no speech delay. One or two other members who were diagnosed with Asperger's have said that they feel that they would belong in the ASD2 category, rather than ASD1.