Is self-diagnosis okay/valid/a good thing?

Post Reply New Topic

EEG, MEG, fMRI, all kinds of cameras, custom-built gloves for motor measurements, computerized behavioral tasks, standard sets of stimuli, strict procedures, actors/actresses, and all the analysis code/math to process/compute results from numerical measurements. Autism research studies are much more than screening tests.

I think presenting anecdotal accounts within this thread would be useful.

This would illustrate the journeys that people took to obtain their diagnosis of autism.

I value anecdotal accounts virtually as much as research. In fact, I believe they serve as an essential adjunct to research.

They provide many truths which help others with their journeys.

Keep those stories coming!

Oh, I am sorry, then. I believed we were discussing apparatuses and devices which are used to help determine whether a person has autistic traits, not neurological differences. Did I misread your previous comment?

Anecdotal accounts of what, exactly? ASD assessments?

I am talking about the wide range of approaches used in autism/neuroscience research, as most researchers use multiple. I use both brain and behavioral measurements. Some studies are purely behavioral, without brain measurements, but those still involve computerized behavioral tasks, stimuli sets, strict procedures, and all the analysis code/math to process/compute results, which is often more difficult and requires more eggspertise/eggsperience than the testing itself. I forgot to mention eye-trackers on the list of devices. Eye movement measurements are purely behavioral data, but they require a $40,000 device to acquire.

Yep....ASD assessments, too.

I was just tonight listening to the audiobook of Temple Grandin's work "The Autistic Brain." Although test such as fMRI are showing evidence of measurable differences in responses to suggestions in some Autistics and the research is very valuable - we are a long, long way from them being a able to use fMRI to contribute to a diagnoses of autism. She compared it to code war era spy satellites attempting to tell what someone is doing inside their houses. I am not aware that anyone is suggesting that autistics in have readable differences in EEG in any diagnosable manner. Dr. Grandin has participated in a large number of fMRI studies at several research centers.

This is part of the reason why reading autism research studies doesn't help with diagnosis, as the studies are not meant for diagnosis, and a person can't make the measurements in the studies.

That is what I had believed, too. Genetic testing could be 20 years away. Effective scans could be almost as far away. But, I am pleased about the direction and accomplishments so far. My concern was that the current diagnostic criteria relies primarily on observable or self-reported characteristics, not metrics. Screening and other tests help quantify these characteristics. Neurological devices would, too, but I doubt they could soon take the place of conventional tools like observable or self-reported characteristics, and screening and other tests. In fact, many of the research studies about neurological-device scanning appear to focus primarily on ASD diagnoses in children. But, all this is above and beyond the minimal expectations of the diagnostic criteria.

That's true---as I think about it---fMRI studies wouldn't help too much with self-diagnosis.

But there are studies which address autistic behaviors as well. And compare them with ADHD and other co-morbids. Most of these are rather recent in vintage--after 2000.

The trouble is: knowledge of autism, and even the definition of autism, are evolving at great rates.

Autism, especially before the inclusion of Asperger's into DSM IV in 1994, is definitely not the autism of 2014.

When we could get objective measures of autism into the diagnostic process, these sorts of debates would become less vociferous. The only barrier to official diagnosis would be the cost, and the objectivity of the clinicians themselves as to how THEY perceive autism.

Clinically observed behavior is by far the most important part of the diagnostic process and the part that is missing from self-diagnosis.

Self-report is a supplement given by a small group of people who can self-report.

Screening is not the same as diagnosis, as many people with high scores on screening tests are not autistic and would not be diagnosed using observed behavior + self-report + childhood history.

Yes, but I am afraid that, early on, the accuracy of such metrics will be incomplete even if they perform well in research studies. That calibration period could bring much more angst among previously "diagnosed" (and more than a few self-diagnosed) spectrumites than the DSM-5 transition has been. Still, I am all for perfecting diagnoses, both professional and self achieved.

"Many" people? The Cambridge screening and factor tests were calibrated at threshold to be about 80 percent accurate. Scores beyond threshold appear to improve that accuracy significantly, don't they?

But the purpose was screening, not diagnosis.

A diagnostic test is ADOS, which is not self-report.
AQ, EQ, SQ, and other self-report tests may also be included in diagnostic process to supplement clinical observation.