Has anybody ever been NOT 'diagnosed'?

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In practice, what would the definition of autism by autistic people entail when it comes to scientific research, e.g. neuroscience?

Great points, jbw!

the Medical Model of Autism is a big money-maker. No profit in us becoming strong, independent, and being seen as a healthy neurodiversity (or whatever the suffix - lol).



We are not a geographic culture, we are virtual. We are the future!



I haven't heard of any autistic anthropologists, but I bet any of us who leave the house on a consistent basis must be amateur anthropologists.

There is a thread on WP asking about professional autistics. There are mathematicians, psychs, philosophers, logicians, scientists, engineers, and people in medical fields. I know several other autistic SLPs. We also have many on the forum who study these subjects from an intense, narrow interest perspective and so are experts regardless of degrees.

We also have artists, musicians, video produces, bloggers, and writers of all kinds - and I know I must be neglecting many other talents as well. We celebrate a diversity of talent! We can spread accurate concepts of autism through diverse, grass roots modes as well as professional, connecting with all sorts of diverse people - the opposite of separatists.

We even have a national organization, ASAN. We just need to build solidarity.

Agree, this is a big problem, especially when an autistic child in born into a typical family. I can see your motivation for studying deaf culture.



I like your approach. "Expert opinions" that state autistics are entirely self-centred are doing a lot of harm. The implied conclusion is that we're incapable of collaborating or forming a cohesive group, and I don't think this is true.



You've already started

Yes, our solidarity will be different from other cultures.

We should share stories of how life is organised in autistic families. I think you mentioned you grew up in an autistic family.

Beyond family, I've created a business that accommodates autistic lifestyles and forms of communication. Our team is not co-located, and for the most part we communicate in writing. Most importantly, we collaborate and cooperate, probably more effectively than most traditional teams, because social status does not get in the way. We have no need for such a concept. The glue that keeps the team together is mutual trust, and the level of trust grows incrementally over the years, without leading to a dominance hierarchy.

You're onto something with attraction vs. chasing. We're building the business around the concrete passions and talents of the people. We then ask what products and services can be developed with all the knowledge and talents that we have on board. No need to coerce people, and no need to align all activities with a business plan/vision that is imposed externally by some dominant individual. Instead we rely on a systematic approach for building mutual trust.

Specifically, what are the actions that a person would take in this vision?
I don't understand the vision without the specifics of the actions and what people would be doing.

I doubt if 1 in 1000 first appointments are for a dx for Asperger's for "curiosity's sake. People call hurting and wanting relief... and the "doctor" can always provide that.

I don't think it's as simple as there is no useful follow up. This is an under researched area. The emphasis has been on children for other reasons, significantly because a lot of research and clinical activity has been started in response to demands from parents of autistic children.

I think for adults like me who seek a diagnosis because of a drive to know, it's hard to know what support or accommodations might be helpful. We have been working various coping strategies more or less successfully for decades, and it's hard to imagine other ways. A rational approach to this situation might be to screen adults for signs of autism and research what might be beneficial for older adults on different parts of the spectrum.

I can tell you that the last year+ has been a continuous series of surprises and shocks for me. To find that I am autistic in the first place, then to find that specific issues I have always had that make life difficult in various areas are part of that--it takes a lot of adjusting. For example, as I began to understand that some difficulties that I experience at work and had always thought of as strictly personal to me were actually experienced by many autistic people, i got a book titled "Business for Aspies" in the hope of learning better practices for dealing with this stuff. But then as I read it, I thought most of it did not really apply to me. I was surprised to find that my wife was reading it and thought many of the things that I did not consider relevant were exactly what I needed. I have learned, somewhat painfully, that I am bad at evaluating my social success and failure. When I think I am doing well, I am often just barely getting by. When I think I am just getting by, things have really gone terribly wrong.

I think that a useful follow up might be testing for specific skills. This could help people like me who exhibit the Dunning-Kruger effect about their poor social skills Guidance on best practices, Suggestions for accommodations and life skills... there are probably many things which could be usefully done to help recently diagnosed adults--but the research to support this hasn't been done, so clinicians are just guessing about what might be appropriate and autistic adults are mostly just left to improvise, much as they have been doing all their lives.

I don't think it's optimal.

I was diagnosed in primary school without personally knowing, and only found out about it aged 15. In university I was told there wasn't conclusive evidence for being aspergic. But comparing how I was then (very smart but equally socially stunted) to now (not that clever but still strange) it can be explained on the surface.

I haven't single handedly figured out the whole thing, but I have some ideas. I came here looking for feedback and possibly expansion...

Neuroscience is looking for multiple biogenetic definitions, for example

Breaking into the autistic brain


Actually, lots of these "single-gene" kids are DXed with autism (about 1/3 of fragile x have a dual DX). They refer to those not identified as having a single gene source of autism as Garden Variety autistics. Anything that contributes to the trio of core neurodifferences is a type of autism, not autism.

Right now, autism is a behavioral diagnosis of deficits (Medical Model). I think there is good agreement on the trio of core neurodifferences, but the wording could be tweaked:

Current list examples from Simon Baron-Cohen
A fascination for details.
A tendency to focus on oneself.
Inflexible behaviors.
Rigid attitudes.

Suggested proactive changes
A superior mind for details.
Good ability to tune out social distractions.
Excellent structure for organization.
Resilience against peer/authority pressure.

By lobbying for a Social Model that uses proactive words, the very definition points to solutions not exclusions.

I also would like to move towards autism as a way of thinking. We are specialists. Our narrow, obsessive interests allows us to explore a subject in wonderful detailed, way beyond that a mainstream thinker is capable of. Our ability to tune out social distractions not only provides more time to focus in depth on our specialty, but allows us to consider avenues and connections that mainstream thinkers would not consider due to social pressures.

What do you think, btbnnyr?

The biogenetic definitions from single-gene disorders have been popular for some years, but I don't think that they will be particularly useful to autism understanding in the long-term. In recent years, Fragile X autistic-like behaviors are being more and more differentiated from autistic behaviors in idiopathic autism, in which no single gene seems to cause autism. Researchers have warned against taking the findings from Fragile X studies and applying to idiopathic autism. It is likely that idiopathic autism is caused by many common genetic variants that are also found in the general population and combinations of which also cause autistic traits in the general population. To me, the common variant-common trait approach is superior to single gene, both from the perspective of focusing on the large majority of autistic people without these single-gene disorders, but also that the same traits that occur in autistic people occur widely in people in general.

To me, autism activities by autistic people should not focus first on the language used to describe autism, but on the solutions. I have often posted on WP on practical projects to help autistic people in daily life, but the focus on autism organizations like asan seems to be on issues like language that are marginal to me, and also discuss things in ways that I don't understand, so I can't contribute anything within that kind of group.

Completely agree with this. Diagnosis is useful for those who have impairments, which really should be everyone who is on the autistic spectrum.



I disagree because that's terribly unscientific. It means anyone can view themselves as autistic just because of how they think. Autism is only recognized because of its disabling effects, like every disorder in the DSM. Without them autism doesn't exist. It doesn't need to be recognized if it's akin to something like introversion.

I disagree with most of your feelgood posts as well. I'm studying and working towards being fairly independent, but I need that help. I think all people with learning disabilities, autism and other developmental disabilities need to be looked out for. And most people with disabilities accept they have disabilities. I don't think there is much shame over the word itself.

Also I don't buy that your whole family are on the spectrum, just because you've equated nerdiness with being autistic.

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Thank you for your participation in my musings. I really appreciate that you and jbw have taken an interest and have been so informative about this issue.

Regardless of the validity (and you know concerns I have about autism research), I think those people are in ivory towers and untouchable. I didn't say it before because I am concerned that I am being a separatist or elitist, but I *think* the dilution of idiopathic "garden variety" autism by single the gene diagnoses of autism is inappropriate. It is one reason I would like to move away from a behavior definition. So I put this out for feedback from the larger group on this forum.

I am so not a neuroscientist, but the neural overgrowth in various areas of the brain makes the most sense to me. Temple Grandin freely shares her brain scan* illustrating this. This coincides with early learning difficulties (bushwacking an extensive, complex overgrowth of synapses) that mature slowly into specialized interests. It also affects the sensory system in various ways. Grandin suggests this can result in at least three different cognitive strengths based on the location of overgrowth: visual, music/math, and verbal logic. I am not using the S****t word because while it happens, it is probably not typical and unfairly puts pressure on kids that is not warranted. But supporting and encouraging a child in bushwacking seems more humane that ABAing them to be as mainstream as possible. However, identifying cognitive strengths through specialized interests would have been a valuable academic approach for me as a child and is how I structure my employment and learning as an adult. Obviously, I need help in accuracy and clarification of autistic cognition, so please jump in



Thank you! I currently prioritize my suggested efforts as building solidarity through:

1. dialog between autistics to explore how we are similar and different and work on putting this into a positive statement with which we may not reach consensus, but all feel comfortable with.
a. This is hard because we will be doing what can be really hard for most of us: collaborating.
b. We will need to consider guidelines that not only monitor the tone of the discussions, but how to support people who initially find it hard to utilize the guidelines.
~ Everyone has something important for this discussion and how to communicate in a way that doesn't alienate others may be one of the most important issues (re: #2 and #6 below).

2. ASAN is a conservative organization (slow and steady wins the race), which is important. We might discuss forming an advocacy that compliments ASAN (not competes), but with a stronger, less politically pleasing style

3. sharing what works for us as individuals to help our peeps be successful where they want help, and being patient with each other as we figure this out. Maybe we can get a forum general discussion area MSI Strategies (MainStream Interface strategies for adaptations, accommodations, and modifications) set up where people could start threads for "need strategies" and "strategies that are working"

4. moving away from a behavioral definition of autism to a cognitive definition.

5. changing the jargon of autism**.

6. launching a grassroots campaign through diverse channels: art, music, writing of all kinds (poetry, blogs, journalism, fiction, etc.), and talking to friends, family, and acquaintances from a place of pride

7. sharing info about grants or whatever to help get those inclined into professional positions in areas that they shine
a. so people can see that just like the mainstream population, autism includes people with a range that includes areas of high prestige.
b. where we can influence how kids with autism are perceived (teachers, aids, administrators, education psychs, and therapists)

8. helping each other learn the art of persuasion. I learned a lot about how to argue well on AFF, but I am soooo autistic in this area.


*brain scans and other neurotechnologies have provided insights into the workings of the human brain, but they are ambiguous representations of a highly complex, 4-tiered system. People are attempting to create a model through the human connectome project, but it is challenging

** I believe that vocabulary, and even grammar, affects perception and thought. This has been best explored though studies of color perception. If we want to change how people perceive us, language is an effective way.

I am glad you're sharing your opinion, Acedia. Your point on the DMS is well taken.

I may be seen as "feelgood" by you and many others, but I do feel good - probably because I come from a background in which autism is the norm (and I did not state that I believe this b/c they were nerdy, you made that up) and I was not exposed to teachers, parents, and peers from which I heard* negative messages about my core being.

However, I have strong concerns about those who I have heard on WP and other forums who likely did hear frequent, negative messages about their core being and are now dealing with depression, self-hatred, angst, and/or learned helplessness.

What's up with your anger?


*I was allowed to shutdown so they might have been said but I didn't hear them. I actually had a wonderful autistic childhood and love being autistic, although employment can be very hard b/c of frequent exposure to co-workers. I find the passive aggressive ones difficult and dangerous.

I do get annoyed with stereotypes because they seem so abundant, especially surrounding autism. I don't like the unscientific ideas about autism. They're quite hokey and romantic. I just want a neutral view of autism, not one that is overly positive or negative. I think both are bad.

neurodiversity - I have had my experiences, which are apparently different than yours and resulted in a different perspective of reality than yours.

If I did the work I am suggesting alone, it would turn out to be a ridiculous effort. That's why I am here on WP talking about it. We need all kinds of minds to carve out a place in this world. If you are interested in this concept, it certainly needs your input.

I am interested in practical projects and not most of the items on the list of solidarity efforts.
I find the whole approach of a vague concept of solidarity, focus on social perceptions of others, and "feelgood" by story-sharing not useful to me.
What makes me feel good is coming up with practical ways to help autistic people in daily life.
Or using ways that other people have come up with.
It's like let's skip over feelgood and social/emotional/language issues and go directly to practical things.
Progress in practical things tends to lead to feeling good naturally.
I visited Autism Friends Network and browsed many threads, but I found almost nothing of practical substance, only the same issues that have been rehashed often like person-first language and functioning levels language.
I am not interested in asan, because I don't think that they represent autistic people well, and I don't want to be represented by them.
I don't buy into the kinds of autism advocacy going on currently.
It is too much talking, not enough of anything practical.
I can't interface with it even more than I can't interface with neurotypical groups.

I do best when I have something to react to. My suggestions seemed to define areas of things you don't want. What are some things you do want to be better for you, and what has worked for you so far? I mean, can you expound on what "practical" things we might want to address? What kinds of advocacy might work for you?

I feel funny responding this way. I am autistic too and interface is tricky. And we don't know or understand each other well (yet?). But I want things to be different. I want to be autistic and have people accept it. I dont mean disruptive behavior, but accommodations for sensory and help with passive aggressive personalities would revolutionize my world.

What do you need? I think it is difficult for many of us to get it individually, but if we can if we engineer an autistic solidarity we have collective bargaining.

And enough with that Feel Good s t

It is one of my more annoying, yet enduring personality traits. You can good naturedly tell me to shove it, but please don't reject me or this discussion for it.