ASD1? 2? And 3?

[Neri]

I just found out I've been identified as having ASD2. Prior to this I knew I'd met the criteria for ASD, but only just bought and paid for the comprehensive report, receiving it yesterday.

After learning the tiniest bit about ASD numbering system, actually, not even, I just found out a few weeks ago a kid, I know, who is a bright kid, got diagnosed with ASD2 and it made me wonder if I might too, because prior to that, I'd just (stupidly, really) assumed ASD1 was Aspies and 2 was intellectually impaired (like my second born son) and ASD3 was non verbal. Not having done the research, I feel very silly for making such assumptions, because, clearly, I was wrong, and it's more to do with support needs and impairments and barriers to society.

But before I look up the DSM criteria, which I really don't like doing, it's so cold and sterile and clinical which isn't a language that feels particularly good to me, I thought I'd ask for people to share with me their understandings and peer support on the matter.

It didn't come as a complete surprise to me that I got a "2", in all honesty, because I've always struggled a great deal and I've just barrelled through some of life's challenges and just totally avoided other's.

However, it's still a lot to process and I'm quite hazy on what this numbering system actually indicates. Can anyone enlighten me?

It is good news for me, ultimately, as it should be the evidence I need to get the level of support I do really need.

 

[VictorR]

The numbers are subjective as it's an art rather than a science, and everyone applies their own standards, but in general...

ASD1: Generally independent, may be working full time, but would struggle without supports.

ASD2: Requires support. Might be able to work full time or do other things like caring for dependents, but at high risk of burnout, generally would benefit significantly from having a support person (family, partner, support worker) to assist with things that may be challenging for them (e.g. booking appointments, dealing with paperwork).

ASD3: Requires significant support (e.g. regular family member support, or assisted living)


ASD1 is kind of broad in that some people just barely meet the threshold for ASD1, whereas others may be close to ASD2. Many people with an ASD1 diagnosis do not receive supports as they are deemed "not disabled enough". This is rather unfortunate.

 

[Neri]

The numbers are subjective as it's an art rather than a science, and everyone applies their own standards, but in general...

ASD1: Generally independent, may be working full time, but would struggle without supports.

ASD2: Requires support. Might be able to work full time or do other things like caring for dependents, but at high risk of burnout, generally would benefit significantly from having a support person (family, partner, support worker) to assist with things that may be challenging for them (e.g. booking appointments, dealing with paperwork).

ASD3: Requires significant support (e.g. regular family member support, or assisted living)


ASD1 is kind of broad in that some people just barely meet the threshold for ASD1, whereas others may be close to ASD2. Many people with an ASD1 diagnosis do not receive supports as they are deemed "not disabled enough". This is rather unfortunate.

Thank you! I knew ASD2 was right for me, but not exactly what it was. That fits me to a T.

I'm am wanting to avoid the very debilitating burn outs that are plaguing me, constantly, and looking for a significant support package which, I am very fortunate to be able to access here in Australia.

I have a son in an assisted living situation and he must be deemed ASD3. I didn't know that either (long complex story as to why that is).

 

[DaisyRose]

I was diagnosed with ASD last year. During school, I was originally diagnosed with an Audio processing disorder. Even though I was misdiagnosed, I still got the help I needed. I think it doesn’t matter what level you are because we are all the same in a way. We can all understand each other while being miles apart.

I’m also still working on my burnouts. Take it day by day. I was diagnosed with having a 75 IQ when I know it’s higher. I had a low IQ during my test because it takes me longer to process information. That specific part weighed down my IQ. They needed a scientific explanation for the test at the time.

 

[Neri]

I was diagnosed with ASD last year. During school, I was originally diagnosed with an Audio processing disorder. Even though I was misdiagnosed, I still got the help I needed. I think it doesn’t matter what level you are because we are all the same in a way. We can all understand each other while being miles apart.

I’m also still working on my burnouts. Take it day by day. I was diagnosed with having a 75 IQ when I know it’s higher. I had a low IQ during my test because it takes me longer to process information. That specific part weighed down my IQ. They needed a scientific explanation for the test at the time.

It only matters it terms of being able to prove eligibility for support services, in my case. Having the ASD2 diagnosis should mean I qualify without having to prove my support needs with reams of paperwork that I may or may not be able to provide.

 

[Progster]

Yes, the levels are all about the support you need. I was diagnosed with Asperger's, but that's because it was over 10 years ago and under the DSM IV. Had it been today, it is likely that I would have been diagnosed with ASD 2 because at the time, I was going through a burnout and was unable to work and needed a lot of help both from family and the state.

ASD2: Requires support. Might be able to work full time or do other things like caring for dependents, but at high risk of burnout, generally would benefit significantly from having a support person (family, partner, support worker) to assist with things that may be challenging for them (e.g. booking appointments, dealing with paperwork).

This really hits home because this specific thing happened to me. I had to care for someone with cancer, but couldn't cope with it. I was on my own with no other support and I burned out, just couldn't cope with all the hospital appointments, emergencies, etc, so I had to seek medical help. It was a disaster, I couldn't do it and I really sucked as a carer. I was completely burned out.

One's level can fluctuate according to circumstances and what comorbids one has. Comorbids can push an ASD 1 person into ASD 2 territory. ASD can exacerbate comorbids, and cormorbids can exacerbate ASD, so there's a kind of negative feedback loop going on. Right now, for me things have stabilised and I'm on medication still, so now I'm ASD 1. But if demands exceedd ability to cope, I can easily cross over into ASD 2.

 

[Neri]

Yes, the levels are all about the support you need. I was diagnosed with Asperger's, but that's because it was over 10 years ago and under the DSM IV. Had it been today, it is likely that I would have been diagnosed with ASD 2 because at the time, I was going through a burnout and was unable to work and needed a lot of help both from family and the state.

This really hits home because this specific thing happened to me. I had to care for someone with cancer, but couldn't cope with it. I was on my own with no other support and I burned out, just couldn't cope with all the hospital appointments, emergencies, etc, so I had to seek medical help. It was a disaster, I couldn't do it and I really sucked as a carer. I was completely burned out.

One's level can fluctuate according to circumstances and what comorbids one has. Comorbids can push an ASD 1 person into ASD 2 territory. ASD can exacerbate comorbids, and cormorbids can exacerbate ASD, so there's a kind of negative feedback loop going on. Right now, for me things have stabilised and I'm on medication still, so now I'm ASD 1. But if demands exceedd ability to cope, I can easily cross over into ASD 2.

I'm a little sad that I missed out on the Aspergers diagnosis. I'm fond of the term Aspie,( and Aspoid at times; I'm way too playful with language).
But, at least, the way it is now should help me, because, like you, burn out is crippling me and depreciating my functionality in some really debilitating ways.
My comorbs are pretty common ones but they are a horrid combination for any kind of social sense of safety. Luckily, I have already secured some lovely social supports that just kicked in from last week.
They are also helping me get some more comprehensive supports, but that is a bit of a longer process.

 

[Suzanne]

ASD2 was on my report card. But, strangely enough, I got a score of 39, which level 2 stops at 38 and Level 3 starts at 40. So, I consider I am hovering between 2 and 3.

I am not able to work; I am not able to associate for long; I need routine, otherwise, I get too stressed.

I do also have bad agoraphobia and the only time I can go out on my own, is very early in the morning, to go to our local bin, which is only across the road from our home.

I guess I would be considered as anti social. But, I do like people when they are nice. Just too many are not.

 

[Misty Avich]

ASD1: Generally independent, may be working full time, but would struggle without supports.

This is me. Although I'm employed I have never worked more than 30 hours in a week before. I think that if I did I might suffer burnout, but I know my burnout would just consist of heightened depression, anxiety and panic attacks. While NTs could suffer with burnout with working like 80 hours a week, I'd probably suffer burnout with working the typical 9-5. Routine and lack of freedom can play with my emotions. I get so scared in case one day I'll have to work full-time, especially if I'm somewhere where I don't fit in socially. I think it helps to see work as not only to earn wages but also as a social life.

If I didn't have my husband I'd still be likely to manage on my own. When he worked full-time I done the grocery shopping and cooked a lot of the time and I managed fine. I just worry how I'd manage financially.

Otherwise, I'm so "mild" and "high-functioning" and "unobvious" on the spectrum that I often question whether I have it or not and feel I don't fit the autism mould like most other autistics do. I know autistics are all different but there are a lot of traits most autistics share and can relate to each other with, but I don't relate to many autistics about many traits, except for noise sensory issues and social awkwardness.

 

[Suzanne]

IQ

I requested to not know my IQ, as I had suffered when a child, being told I was too stupid and that has stayed with me all my life, so I was fearful of it being low.

 

[Tom]

I'm a little sad that I missed out on the Aspergers diagnosis. I'm fond of the term Aspie,( and Aspoid at times; I'm way too playful with language).

Aspie is stil used informally. I always liked it too. Short and simple. But the negative association with Hans Aspergers has made it fall out of favor with some.

 

[Atrapa Almas]

The more I learn about IQ tests the less valid I consider them. Maybe in some years IQ tests will be considered as good as Phrenology...

Phrenology - Wikipedia

en.m.wikipedia.org

 

[Kavigant]

IQ tests may not be measuring "intelligence" per se but they do, with decent accuracy, measure some quality which correlates pretty well with ability to understand and function successfully in our complex society (barring other factors such as mental/emotional/developmental challenges)
The main area in which this seems to break down is in those with high IQ values, who often have trouble functioning in society for reasons different from those with lower values.

 

[Kavigant]

I really hope that we can reclaim "Asperger's" and "Aspie" since they're easier to say and explain than "High-functioning Autism" or "ASD1."
Plus, most people probably don't even know that Asperger's is named after some dead guy who believed some bad things.
(I know that the official terminology has been changed, but colloquially, the word Asperger's is just easier to communicate to people.)

 

[vergil96]

How does one not burn out?

 

[tazz]

generally would benefit significantly from having a support person (family, partner, support worker) to assist with things that may be challenging for them (e.g. booking appointments, dealing with paperwork).

I joked if I won the lottery the first thing I would do is recruit a butler. I wonder if they do butlers on prescription.

 

[Kavigant]

How does one not burn out?

The best I've been able to figure out is through learning enough about yourself and your requirements/reactions to prevent it. Once I'm burnt out, it's too late and I can only pick up the pieces.

Self-knowledge is the greatest tool, in my experience, especially knowing about ASD and how it affects each of us in particular.

Prevention is the only way, in my experience. I need to remember to focus on maintaining stability. Checking in with myself to catch the early warning signs of burnout (which it's taken me SO long to learn). And taking "mental health vacations" periodically in order to restore my peace.

 

[tazz]

I'm still getting used to this "I need help" thing. I've been stressing for weeks about needing dental work - not because of the work itself (although I really don't like dental work) but because I know I've got to talk to various people to figure out exactly what needs doing, choose between various options, book an appointment or two. So I've been putting it off. I find I can't focus on other things very well. The anxiety is building.

A few days ago I found out accidentally that my support worker can do a lot of this for me.

It never even occurred to me to ask.

 

[tazz]

Doesn't DSM separate out Social Communication and Restricted, Repetitive Behaviour - so you could be diagnosed with a different level in each?

E.g. ASD2 for Social Communication, and ASD1 for Restricted, Repetitive Behaviour?

 

[vergil96]

I joked if I won the lottery the first thing I would do is recruit a butler. I wonder if they do butlers on prescription.

I solve this problem through being pedantic or letting housework run down. Visitors say my (small) flat is extraordinarily orderly. If there is order and things are in cupboards and boxes, it's easy to clean. I also try not to have too many things. So there isn't much to take care of.

but because I know I've got to talk to various people to figure out exactly what needs doing, choose between various options, book an appointment or two. So I've been putting it off. I find I can't focus on other things very well. The anxiety is building.

I have experienced that and I think it's social anxiety. I don't worry about appointments any more since I realised that it's not a performance and I can ask as many questions as I want and take the interactions as slowly as I need to. It's not a performance, you're the patient and you also deserve getting all your questions anserwed and feeling comfortable. I say performance, because the way I was raised, I was taught the notion that interactions with people are a performance and I need to behave in a certain way and say certain things for them to work, which has hurt me in the long run, because I had only a few typical situations at hand to play and I felt very misunderstood in every possible way and felt frustrated not being able to find the right combinations of "buttons to push" to obtain the right result and be understood - but communication is a two way process, you don't have to conform to the other person 100%, it ought to be closer to 50-50.