ASD criteria from YOUR perspective?

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I am trying to describe ASD from my own perspective for a talk - like a set of diagnostic criteria, except the priority and perspective is people with ASD. That means, for instance, that "age appropriate peer relationships" is not an issue, because I would never notice it. My first effort looks like this:

- Very aware of being "different"
- People do not mean what they say, and sometimes lie - I often misunderstand what they meant to say
- Sometimes conversation sounds like a foreign language
- Most people understand each other with body language and emotional cues that are invisible
- People misunderstand me or don't hear a lot of what I say
- Most people tolerate incredible amounts of noise, smell or chaos without showing difficulty
- Sometimes my brain shuts down when noise and emotion get too much
- Light touch, rubbing, being bumped, scrathy clothes and wet sensations are very unpleasant
- Unexpected or unnecessary changes in routine are difficult
- Motivation is hard, I procrastinate a lot

Do you have your own description of your ASD, things you don't agree with or things that really should be in the list?

The problem I see with this approach is that there are so many possible traits of AS, and many of them polar opposite to one another, and then a wide variety of degrees/strengths of each trait that every single one of us has a different AS profile.. which means you'd end up with a nearly infinite list of personal definitions of AS criteria from each of our perspectives, especially when it comes to describing sensory issues.

Hmm, perhaps that's an aspect you could incorporate into your talk? The fact that we all have a different personal profile of AS traits that makes us unique, but that from *your* perspective and experience AS is ______ but from others it's _____ and you see different traits etc in other Aspies you know etc. There is no cookie cutter AS description, which is especially evident when you get a couple or a few different Aspies together and observe polar opposite traits in them - but all of which are still captured under the umbrella of possible AS traits.

ie My profile is different from my twin brothers & other family members, just as it's different from various AS friends. My nephew has some polar opposite traits to his step brother, leading his stepmother to believe he can't possibly be afflicted by AS due to her perspective of knowing her biological son's profile and associating his profile with AS in general.

There's a major problem with this of the assumption of being aware of being different - being aware of being different requires the self awareness and the awareness of how others are to be able to make that comparison. Even when there are drastic differences, there isn't necessarily awareness of that.

For example - I have severe sensory issues, but until I was in my 20s I assumed everyone perceived the world like I did. It didn't matter that my issues are severe, I couldn't conceive of the fact that others didn't perceive the world like I did until I was explicitly told that. I'm still learning of differences in how my sensory processing works.

Knowing that people lie is another one that really often hits this issue. If people are completely honest, it can be hard for them to realize that other people are not.

For me, this has been one of the more distressing parts of AS, actually. I want friends but find it very hard to make them and keep them.

If I were to define Autism, it would look like this:

A: Social Disruption Qualified as a combination of the following:
1: Poor integration of non verbal communication, such as tone of voice or eye contact.
2: Atypical use of language. Such as mute, unusual accents, use of overly specific terminology (Formal communication style), or similar disruptions.

B: Evidence of Developmental Nature
1: Symptoms must begin from birth or very early childhood.
2: Evidence of neurological abnormality such as motor difficulties, sensory integration, and self stimulatory or sensory avoidance behaviors.
3: Uneven cognitive profile.

With a note that females on the spectrum often have mimicking behaviors and are likely to be perceived as less autistic.

That is no problem at all. What characteristics do people with ASD, or visitors to this site, have in common, and what characteristics distinguish people who visit this site from people who don't? Lying outside the normal range is just as valid a difference as any other.



You have that awareness, as evidenced by identifying with ASD and visiting this site. Everyone I ever heard describe their ASD has talked about being "different" and how ASD helps explain a feeling they had before they ever knew it was ASD.



I agree, but I do not feel the lack of whatever some expert defines as "age appropriate socialization". I feel the lack of meaningful, positive relationships - perhaps those same experts would think the relationships that I value are not age-appropriate or are not socially conformist.



That looks far too like the DSM or some other outside expert view, especially items like "begin from birth", which only an outside observer can see. I want to know what people with ASD feel about having ASD.

So if you had to explain the way ASD feels, without medical terminology, what would be in the list? What is most important?

My impression is that the 'age-appropriate' requirement is meant to exclude kids from meeting that criteria due to developmentally appropriate friendlessness - for example 2 and 3 year old NTs often don't form stable friendships, either because they aren't exposed to many kids their age or because they don't have enough social skills yet to really develop a relationship without substantial adult support.

I think the from birth is an important distinction between PDDs and other disorders such as Schizophrenia, developmental trauma, personality disorders, similar conditions like CDD and Retts.

I don't think there is a universal experience between us that doesn't fall under what I wrote, but that's my own perspective I suppose.

Like I said, I was in my 20s before I realized that other people didn't perceive the world like me, and it wasn't because of feeling different, it was because of reading about autism spectrum disorders and how people are different, and then finding out how people are different. I'm doing a lot of learning still.

I don't have the feeling of not fitting in. I don't feel abnormal and different. I know how I'm different because I've been researching autism so much. I know I'm autistic because professionals told me. I found out when a professional told me when I was 13.

Autism specifically impacts theory of mind and theory of mind specifically impacts this. With impaired theory of mind someone does not know how they are different than others.

For example, myself as a teenager - I knew others went shopping and I refused to go. I could not understand why other people faked interest in shopping. I could not understand the possibility that others might possibly like shopping. I couldn't understand them being different than me in that manner. I didn't feel different than them other than that they wanted to fit in and I didn't and that I couldn't understand them wanting to fit in.

But this theory of mind impairment wouldn't allow me to realize that I was different, then they told me about Asperger's. Then I had something to research. Then I read about autism. Then I found out I was different. I still had theory of mind issues, (I thought they faked interest in shoppin after that point).

However, the point stands, that it was an external awareness, not an internal awareness. Every bit of my learning about autism has been external. It's not been "other people are strange" its not "other people can process more sound" its not "other people don't stim and move their hands funny ways". It's "other autistic people have these traits and I have these traits so maybe they have to do with autism"

Its "this is me and I assume I'm normal and assume everyone else is like me because why wouldn't they be and then research autism a whole lot and the more I research the more things I specifically identify with and realize that those are symptomatic, not things that are true about everyone like I've always assumed"

I am not like that "everyone you've talked to".

People who are diagnosed as adults having not heard anything as a child who were diagnosed because they found it themselves, likely have that, but that doesn't mean its universal to ASDs. Its a thing that people tend to gain as they get older in many cases.

I also did not realize that other people's mind was different from my mind.
In kindergarden and lower school I could not tell children and objects apart, they were "noisy coloured moving objects".
I had no realization of "sameness" or "being different".
The only person I could relate to was a cousin as we shared the same special interests intensively.
Age 17 I started to share a special interest with another person but when she wanted to introduce me to her friends I withdrew and this happened again with another person, as I cannot handle more than one person at a time.
Age 27 I realized that other people had finished education, got jobs, drivers licence and children.
I wrote down: Somehow time has forgotten me.
People started to point out me being "different", "alienated", "weird".
After I lost a long-termed and important accomodation I got bad sensations (depression).
I had lifelong fear caused by overload, where I did not know it was fear, because I had no term for this bad feeling sensation.
I could not identify feelings and later indicated very basic feelings in simple selfmade sign language.
Finally I got diagnosed with autism, but I did not really know about autism.
Now I know that I am different after learning about autism.
I also thought that people experience the world like me and wondered why women went often shopping when one feels so overloaded doing it.
Now I know they don't, but I still need to remind me very often that people feel and experience differently from me.
I still forget that people experience differently from me, but I cannot picture how they experience.

I can pretty much sum it up in one sentence: "I am surrounded by aliens!".

Yes, that is a good summary. I do not feel that DSM (or any alternative medical description) conveys my feelings about how I am:



I am not bothered by abnormally intense interests, inflexible or non-functional routines or a lack of age-appropriate relationships. I am bothered by aliens, alien behaviour and aliens reacting badly to my weirdness.

I want to present a set of ASD characteristics from my own perspective. For me, being different (and being seen to be different, or excluded for being different) is the most important issue, which leads on to social friction and social isolation. Almost everything in DSM-IV part A is, from my perspective, experienced as difficulty socialising or as misunderstandings with other people - I can't feel that I lack emotional reciprocity, only the reaction of other people to that lack. Part B is not an issue, until other people object to my behaviour - I am happy with my interests, and unhappy that other people do not share them. Part C is a major issue, resulting from the earlier issues. Sensory issues don't get a mention, but do appear in DSM-5. Parts D to F predate my personal awareness.

When I was younger, I was a nerd. I didn't understand why people got upset by things I did. I didn't understand that people thought differently than I did. I was angry at my mother for thinking I was immature, gullible, accident-prone and had no common sense, and that was why she limited my freedoms. I didn't understand that other people really did love their parents--I honestly thought they were saying it because people expected them to. And even though I outgrew most of the symptoms, I still get hurt because I lose friends and don't realize I lost friends until someone tells me 2 years later that I acted inappropriately and inadvertently pissed those people off. Then I wonder, What else have I been missing that nobody has told me about, or tried to tell me but I totally missed the cues?

For me it's not that I'm bothered by them, it's that they seem so strange to me. And part of that is things like the fact that they aren't obsessed with interesting things, they are focused so much on each other, they don't need a routine to get anything done, etc.

Funny, I remember about 15 years ago working in an office about the time where the internet was still in its slow days, and a very sweet girl who worked there didn't know what to do with the internet. I told her, Well you research all those things that you are passionate about or really interested in. She said she didn't have anything like that. I looked at her like SHE was from another planet. I said, Aw come on, sure there is SOMETHING that you are interested in! She looked up toward the ceiling as if thinking really hard, and then looked at me pretty sincerely and said out flatly, No, there really isn't anything that she's that interested in. I honestly didn't know how to respond. I was Totally Floored.

I have got to some kind of summary of my own criteria of "being ASD", which are (in order of priority):

1. Feeling "different" from other people, and being continuously reminded of it

2. Having a lot of verbal and social misunderstandings

3. Liking order and predictability more than most people

4. Not being in touch with emotions (my own or other people's)

5. Having sensory differences from most people (mostly too sensitive hearing and touch, also under-sensitive balance)

All of these contribute to social friction, remarks from other people and social exclusion

I would really welcome any comments on these, before I finish the writing.