Has anybody ever been NOT 'diagnosed'?

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There was a project run by a nt person with an autistic relative to make a visual-oriented cookbook for people who have problems with verbal instructions. The sample recipe they showed was well-done and useful.
I worked at an autism nonprofit to educated autistic students by making materials suited to people who learn in ways different from mainstream. That organization works with local school districts to help students the districts don't know how to educate.
These are the kinds of practical things I am not talking about.
I am interested in projects with tangible products.
I don't want to join an autistic collective or physical community or go to autism conferences or retreats.
Those take time, money, and focus away from what matters to me.

Well, thanks for listening and responding

I meant that these are the kind of practical things that I am talking about.

What I see lacking with autistic advocacy is basic understating about the vast majority of autistics. The majority are not super successful or the most profoundly affected but that is all that is advocated for.

Most of us understand that Autism Speaks represents parents of profoundly affected. Frankly you saying this forum is a Autism Speaks curabie forum shows a deep misunderstanding of what happens here. I have personally said there advertising describes us as Satan. I have not been censored for it. While they do have supporters here, the majority of posters have very harsh things to say about Autism Speaks that are said on an almost daily basis.

But Autism Speaks is not my main concern. I mentioned them because your statement needed to be refuted and it is an example of my next point. I have found a lot of advice from super successful aspies is of the stop being lazy, just try harder variety. That is the same condescending s**t I hear from the NT world. This shows complete lack of understanding that a lot of us can't. I totally agree that that biggest reason most of us are not successful is because we are a small minority (ie the majority can get away with discrimination on purpose or through ignorance)
thus our different abilities get overlooked in the job market. But what is not recognized by these "shiny aspies" is that some our problems are real deficits. Hyperfocus is great, the problems caused by poor ability to change is not all, about the NT's. What I have also noticed is that people use language like "I want to share what worked for me" it often it ends up a a quasi religious almost crusade type thing where if you do not want to follow you are judged as somebody who is content to wallow in their problems.

Was self-diagnosed first then professionally. Now I'm being told that I have c-ptsd and a lot of borderline traits as well. good times /cheers

I was never "officially" diagnosed. I was diagnosed by a psychiatrist but because we meet at a coffee shop and not at his office. it never "officially" got put on paper but then again, it never cost me anything ether. I am still yet to get it "officially" done but that will cost money and I am still debating whether or not the cost is justified.

Thus far, perhaps. It doesn't need to stay this way. That's why we need diverse input.



It was not a statement, it was a question. It did not need to be refuted, it needed to be answered. I perceived the thread to be heavily about relying on mainstream DX/TX, which is typically curbie. This made me reconsider the rumors about WP on other forums (i.e. AS sponsors WP, and people are banned for disliking AS on the forum), so I put my question out there. Thank you for answering it.



You make a lot of good points. What helped "shiny aspies" may help other "shiny aspies", but people with more barriers may benefit from conversation with someone who faces similar challenges. However, if we are going to successfully support each other we need to learn about each other. All of us need to educate each other for any of us to succeed. After getting annoyed when someone makes an uninformed statement that feels offensive, use it as a teachable moment. Enlighten us!

What I was attempting to say is that through participation in bringing all viewpoints (like you're doing) to whatever organizing body we join/form, we can make a list of priorities and address them through collective bargaining. I put out some of the ideas in my head as an invitation and to get people thinking. I think better when I have ideas to bounce mine off of. I suggested a platform for that reason. If we move forward, the body of collective bargaining would build the official platform. If it is not a diverse body, we may need to recruit those who are not represented.



So how does someone with real deficits do job planning? Does this person have a way to communicate this? My first job (as anrealized autistic - I grew up in the 50s where it was either institutionalize or get by) in this field was as a school SLPA. My 2nd, however, was in supported employment, where I met the man who diagnosed me. He was a non-verbal man with severe sensory needs and high anxiety and he was in a job that did not interest him. We carved out a position as mentor and public speaker. He went on to make the movie, Wretches & Jabberers. The reason this guy was able to do all this is because he wasn't alone and he had a voice that was listened to. He had a community of people who got who he was. This is not in place for many people with autism.

If you read Autism's First Child, you will have another story (of the first person diagnosed with autism Donald Triplett) who has succeeded despite considerable barriers. Of course Temple Grandin is a third. Carly Fleischmann is another, as well as Amanda Baggs, But these stories are far and few between because we do not have the collective bargaining we need to get the simple message out that people with severe autistic barriers need communication and community acceptance to be who they are and not treatments to attempt to turn them into who they aren't.

I refer to the the Deaf community as a prototype. Not only did they build a university, they support one another. They were, before cochlear implants, able to step in and help Deaf children born to hearing parents so the child would get what was needed and not feel isolated. For autistic children, they predominantly and overwhelmingly face unintentional emotional abuse through the predominant cure autism approach - at best.

I *suggested* a platform. I tried to be clear that developing a platform would need to be our first business. Wikipedia has a short summary of the Autism Rights Movement, We can join a current movement that represents us or we can create one that is closer to what we want. We need all kinds of minds to participate.

I highly recommend collective bargaining, a virtual meeting place so everyone can participate in all aspects of development and implementation, and individual grassroots efforts that reaches out of the autism community into the mainstream. I would also like us to think about grooming volunteers (and NOT just "shiny aspies") in the 'power of persuasion' to officially represent us to the mainstream. Based on the adage 'Power Corrupts', I suggest that because this position can engender celebrity status, it should be rotating and inclusive. I have run into this celebrity-power-corruption thing in too many autism and mainstream organizations.

I would be more attracted to a new autism organization, because I have given up on useful things coming from current organizations.
But the vague idears around terms like "platform", "solidarity", "collective bargaining", "power of persuasion", and "celebrity status" don't attract me.
I am attracted by practical projects done with people (including autistic, neurotypical, and anyone else who wants to help) who want to move beyond sharing personal stories, promoting autism gifts, creating autism celebrities, etc.

"platform", "solidarity", "collective bargaining", "power of persuasion", and [anti-]"celebrity" safeguards are empty containers awaiting ideas. This would not be MY organization, it would be OURS. I would not fill these containers, WE would fill them. I don't know all the perspectives and needs of the autistic community, but WE do. We would need to be a diverse group to accomplish this.




I want to do more than share personal stories too - we do that on WP anyway, but some people may need a place to share histories. I would not want to deny this to someone who needs it. You want practical solutions you can immediately utilize - I bet you're not the only one. Other people will have other needs and preferences. These are ideas for the platform container.




The idea of autistic celebrities is distasteful to me too. That's why I generated a suggestion to AVOID celebrity-making situations.

I don't think that we need these containers at all.
They are meaningless to me.
We should start small with practical projects.
If people want to share personal stories, then they can start their own blogs to do so, and other people who want to know can follow the blogs.
I don't think that such personal stories should be promoted by an autism organization, because they dilute/divert focus from practical projects.

Agree. The diversity within the autistic spectrum can be a real strength.



This my be the toughest part, because the concept of persuasion is incompatible with autistic thinking. At least it is incompatible with my way of thinking, and it gets really close to what I would perceive as neurotypical communication and thinking. At best we can try to emulate the 'power of persuasion', and it will take a lot of mental effort to perform the emulation. But I agree that emulation of persuasion must be part of our neurotypical interface, otherwise we will not be perceived as competent.



Spot-on, and extremely important. Even more so when considering that in external communication we will need the emulation of persuasion. Internally we must collaborate on a basis of transparency, scientific evidence, and mutual trust. The latter requires time to develop and grow.

I wasn't sure what you meant so I turned to google and found [/quote]Emulation (observational learning).



Perfect! It provides a way to not scare away [those with whom we share the world and need to work with] without compromising our autisticness.



Yes, beautifully said, jbw!

We have not garnered enough interest to develop a critical mass of neurodiversity. We can't proceed without this critical piece. How do we keep this concept alive while build trust in the project?

Projects with tangible products are ways to build trust in people who can see that there is something being worked on and towards instead of the endless talking, arguing, and isolating of autistic people done by autism organizations like asan.

catch 2, there won't be tangible products without people to get things started

Yes, people to get started are required, only 1, 2, or 3 on small projects, but the whole let's unite and agree on certain set of principles and terminologies is unnecessary, and I can't do that as an autistic person.

Often, those vague concepts and terms leave out the people who are needed to do practical projects, because many people can't plug into those things and understand them, like the two posts from you and jbw above my previous post were incomprehensible to me.

You are such a big help!

My autism actually makes it harder to speak in simple ways. One of my coworkers translates my speech for some people b/c it is really a struggle. Its weird because you'd think it would be easy to be plain, but I have that "little professor" speech. I have to actually translate my multisyllabic words into small words.