Has anybody ever been NOT 'diagnosed'?

Post Reply New Topic

And, then, there are some oddballs (like me). Who gets diagnosed (by one Clinical Psychologist specializing in testing), but due to his skeptical nature has doubts about the diagnosis (despite the fact that the testing seemed to be fairly comprehensive). And then proceeds into therapy (with another Clinical Psychologist with expertise in classic autism) for a second opinion.

Sometimes, I wish I could just stop thinking so much.

Are you going to have another test? Are theresuch a thing as absolute certainty?
Someone in here said, that the only thing that is guaranteed, is eternal doubt.

Adam - you have more or less answered your questions in your own first paragraph!

What I meant to say was that simply getting diagnosed doesn't really change anything, given that, as you say, there is no meaningful follow-up such as treatment or therapy or any other particular help. And, given that ASD in all its forms is still a long way short of a consensus about how to deal with it, or even how to define it, a well-researched self-diagnosis is quite likely to be as reliable as most professional diagnoses. I understand the need that Aspies can feel for their self-diagnosis to be confirmed - the Eureka moment is very sweet - and I think it is highly likely that some assessors will take the view that the best way to help their clients is to give them the diagnosis they need.

A well-funded research programme is not very likely to happen, but there are obviously some people out there who are doing some work on the subject, because the criteria seem to be under continuous review.

It seems to me that many of us are putting ourselves forward for assessment but the results, so far as I know, are not shared with any researchers - it seems a total waste of loads of potentially useful research data, and if I knew that my assessment was contributing to the search for some answers, rather than just gathering dust in an assessor's filing system, it would seem to be worth a whole lot more.

Thanks MrGrumpy--I couldn't quite see where you were going with this, but now it makes sense.

I think it is unrealistic to think there will be very much more in the way of post-diagnosis treatment or meaningful follow up because the state of the art just isn't there yet.

But this is rapidly changing. Just this morning, I was reading an article at SFARI about the CDH8 allele that causes a specific autism phenotype or subtype -- From what I have learned about genetics so far (and I have only been studying this for a year or so, so please forgive errors in my understanding) most heritable characteristics are not the product of single alleles, but the cumulative effect of multiple alleles. There may be hundreds or even thousands of genes that contributed to one or another of the phenotypes now grouped under the ASD umbrella diagnosis.

For individuals with the CDH8 variant, specific therapies to assist may become possible and this may result in better digestion and sleeping patterns, etc. but this won't help the majority of autistic people who don't carry this allele.

So we have to be a little patient while the research continues. I think there is very good reason to believe that knowledge in this area is going to grow very rapidly over the next few years and gradually the gaps in our understanding will be removed. I think we will see stories like the CDH8 story every few months, then every few weeks, then several times a week and several each day. Then we will have a much better basis for understanding the diagnosis and designing effective post-diagnostic procedures to actually increase the wellbeing of the diagnosed.

There are a number of initiatives to share information for research but I don't think there is a central clearinghouse for that data. Maybe btbnyr , Jannisy, or Callista knows more about this?

Maybe that is something we could build? Maybe Simons or 23andMe or Google could/would work with Alex and volunteers from WP to create an open access genotype/phenotype library for people with ASDs that could benefit all researchers?

Maybe I need another cup of coffee.

And they are both likely correct.

Its time for professionals to be taken down from their wobbly pedestals. I work in a profession that has realized that the "client" is the actual expert who has come to us for guidance through self reflection in thinking about what they already sense. When it comes to autism, the experts are the autistics.

The current study of autism, by the current rank & file of "experts", is similar to the origins of the study of Anthropology.

Anthropological analogy for the current state of autism research. Anthropology emerged from a natural history perspective when Europeans colonized exotic lands during the seventeenth, eighteenth, nineteenth and into the twentieth centuries, they studied the "human primitives" overseen by colonial administrations. It was a catalog of strange people and their weird customs, and superior studies were those for which bizarre traits of nonEuropean people were observed "empirically".** There was no fraternizing with the natives, just a list of how they were "different" (read "inferior") from the ruling class. There could not be too much condescension and there was no attempt by the "experts" to understand what were observing, although negative conjuncture was acceptable. This was an us vs them approach to science, and was useful to justify inequality among humans - but little else.

There is currently not even an actual definition of autism, which now is simply an incoherent bag "experts" throw any hypoverbal child with established, specific interests and non-mainstream behavior. This exemplifies Boorstin's view that ?The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.?

Proposed path of Autism study based on analogy of evolved Anthropology. Cultural Relativism was conceived by Alain Locke in 1924, established by Franz Boas, and popularized by Ruth Benedict and Margaret Mead. Cultural Relativism transformed anthropology by redirecting it away from "the limited confines of culture-trait diffusion studies" and toward understanding the differences b/t people through the interpretation of their culture. It is integral in cultural relativism theory to comprehend that each culture has its own moral imperatives that can be understood only if one studies that culture as a whole. It is inappropriate to disparage the customs or values of a culture different from one's own. These customs have meaning to the people who live them which should not be dismissed or trivialized. Researchers must not try to evaluate people by their own standards alone. Morality is relative to the values of the culture in which one operates. In appropriate autism research, we define who we are and we are the experts at interpreting our culture. Researchers need to listen to us in order to accurately interpret the scads of "empirical" data they don't even yet know they can't understand.

I believe that Deaf culture is the closest model to autism. They have a difference that is considered an impairment, deficit, etc. by the mainstream. They refused to accept this description of themselves. they refused to be defined by the mainstream. I think we could learn a lot by studying Deaf culture. They became very influential and even developed their own university. We already have an organizing body through ASAN.

**The APA continues to delude themselves that "empirical" is a form of magic that can turn even poor research into something valuable.

Can you be semi-diagnosed? Basically AS first came up in association with me 7 years ago when I heard about it and thought I had it... but I was diagnosed with bipolar disorder after a huge breakdown... Since then I've had professionals every now and again say I have it, and now some therapists say I have it, the therapist seeing me now says she's experienced with autism cases. But I doubt my psychiatrist would diagnose it, because my last one who works in the same office said that AS would not change my treatment plan for my mental illness.

Anyway, my assumption appeared to be right in this case, but not everyone is right all the time, I didn't ever catch my bipolar until it was diagnosed for example. It might have taken this many years to get sort of straight because I'm female.

Deaf culture has a difference that is considered an impairment, deficit, etc. by the mainstream. They refused to accept this description of themselves. they refused to be defined by the mainstream.

I see so much angst, depression, and frustration on these forums. I attribute much of it to a people who are conflicted because they know who they are but are defined differently by the dominant culture. They are told as young children through adulthood they are broken and need to be fixed.

I am very interested in building solidarity, defining who we are among ourselves, then as a large body of well informed people - publishing it, creating music, art, poems, video, games, etc. to distribute this knowledge through diverse cultural media to be widely accessible to all.

This is not an elitist, superior, separatist approach. It is just a here we are and this is who we are approach. And it has already started.

Our solidarity will be different than other cultures, and I think this discussion might be a good talking point. Autistic posters have pointed out that its like herding cats. I think this is a valid point. I have 4 cats. If I chase them, they run in 4 different directions. So I don't chase them, I attract them. We have ASAN and several good forums. What can we do to make them more attractive?

How do we begin to think about this?

The Clinical Psychologist I am seeing for therapy does not do neuropsychological testing. Though, we have spent time discussing the diagnosis criteria and which ones apply to me. Mostly, because I find a lot of terminology used to describe Aspergers (DSM-IV) and ASD (DSM-V) quite confusing and overly vague. I have found these discussions to be quite illuminating.



Agreed. There is no such thing as absolute certainty.

I have had the experience to which MrGrumpy aludes on too many forums, but Autism Friends Network (AFN) is a new, still small - but a great place - for intelligent, civil discussions of this nature.

Adults are a small percentage of people newly diagnosed with ASD, so there is no useful post-diagnostic follow-up for adults.
For children, there is a huge system of post-diagnostic follow-up.
For adults who were diagnosed because they had specific impairments for which specific support or accommodation is clear, diagnosis is useful and can lead to improvements in functioning, as for me, but for adults who want to confirm self-diagnosis as need to know that they have ASD, there is no useful follow-up, and some say that they don't want any follow-up, but only want confirmation from professional.

The phone counselor I talked to within less than an hour told me I likely have severe OCD and "likely" Autism or Aspergers along with moderate anxiety. I didn't even say those words to her! It must be that flipping obvious. Like my last psychologist said "why on earth would anyone WANT to be diagnosed with an ASD if they did not have it?"

This is now the fourth expert who while unable to formally diagnose has said it's very likely I meet the criteria for both. How much proof does one need?

Is Wrong Planet a curbie forum? I've heard rumors to this effect. That WP is influenced by autism speaks.

You all seem to heavily rely on NT opinions & their jaded research and desire NTmold treatment. I have nothing against NTs or gynecologists, but would the guys on this forum go to a gynecologist for their health concerns? Why would autistics go to NTs for their concerns about autism? This thread is full of disappointments with the results of going to NTs for this very reason. There is tons of follow up for those not overly reliant on the opinion of unenlightened "experts".

We are not lab rats - we are intelligent people experienced in autism on a forum with other intelligent people experienced in autism. Maybe one of the numbers people on WP could calculate the sum of years of experience with autism on just this one forum. I alone have 61-years of experience and have worked with other autistics since the 1990s. We each know most of what we need already, and we can ask the other autistics about the rest.

Or you could just keep trying to force your beautiful autistic minds into NT shapes.

I don't know what you are talking about.

When I am talking about post-diagnostic follow-up, I mean things that will help autistic person improve functioning in terms of being able to do what they want to do in life, e.g. flexible schedule for me, and this would make a big difference for many autistic adults who can have good career but can't deal with 9 to 5 office schedule/environment.

Or things that will help autistic person complete education to the level they want for them to be able to do what they want to do in life.

The whole separation of autistic vs. nt and not being able to get help from nts is not useful to me.

I had to look that word (curbie) up. LOL.

As far as I know, WP is simply an online forum where people openly share their personal experiences, thoughts and ideas. If I don't care for what people are saying, I ignore them.

Absolutely, btbnnyr!!

This is what I am talking about. btbnnyr shared some things that are helping her/him.

We have all kinds of successful autistics here. If we talk about our dreams on this forum and where we are stuck, there are people who can suggest a plethora of things they did to move forward in similar circumstances. My mother (my whole family) was autistic. She coached us on how to accommodate to the mainstream. All of us have a masters in our field. She ablized us. Today, autistics are taught to be disabled by unenlightened parents, teachers, psychs, peers, etc.

Discarding the Medical Model in favor of the Social Model of Disability would be a big step forward:






Nor to me, btbnnyr.

But "The whole separation of autistic vs. nt" is what we have because we are marginalized and broken. We are in self contained classrooms, we are under employed. WE ARE SEPARATE. I want us to be accepted for who we are and what we have to offer. {cue Bob Marley's One Love}

My point, referencing the example in my previous post, is not to shun gynecologists, but to utilize them in ways that are appropriate. Seeing a gynecologist for a broken arm doesn't make sense, and it is not offensive to a gynecologist for me to state the obvious.

Many people think if something is published in a peer review journal, it is good research. Most (no statistics, sorry) research is funded by stakeholders and proves what they want proven. NTs are notorious for following the crowd, and universities and other research centers need funding and choosing what is researched reflects that. An NT interpreting even the most perfect, nonprejudicial data is out of his/her depth unless s/he consults with researchers familiar with the culture of autism (I already posted on anthropology as an analogy for current autism research). The research is typically interpreted through the lens of negative description (refer to baron-cohen and empathy for example). The DNA data referred to by another poster is more black/white, concrete, easily interpreted information.

We have the power to define who we are in positive terms and present it to the mainstream through the talents found forum: authors, journalists, artists, video producers, scientists, etc.

Many of the external "experts" will cling to their pedestal for as long as they can.



Yes, these observations are spot-on. The problem is that minority cultures that don't have a geographic origin/centre tend to be instinctively treated as inferior by the surrounding mainstream culture. I've read some intriguing material on Roma/Gypsy culture on specific aspects of the culture that make it resilient, allowing it to survive within openly hostile surrounding cultures. The Roma have a number of rituals that emphasise their difference, and strategies that minimise the risk of subversion by the surrounding culture. Intriguingly, the Roma are using a non-violent approach to avoid provoking the strongest forms of violence from the surrounding culture.



It would also make sense for more autistics to become anthropologists to study all the mainstream cultures. It would send the signal that we listen and care. The results might also be useful to larger cultures or nation states that are in permanent conflict with each other.