Is self-diagnosis reliable?

Post Reply New Topic

Yeh, that's it. And you think 'you are the only one'.

Agreed and agreed.

And agreed again. I also self-diagnosed with research and online tests, but it wasn't until I sat down with a professional who is very experienced in diagnosing adults and got a positive diagnosis from that doctor that I really started to believe or trust it. With the self-diagnosis there was always an element of doubt. Now I feel I can be as certain as I can be.

As an adult I've learned, over years, decades even, to 'fit in' as best I can. The Dr who diagnosed me said when I first sat down with her and we started talking she thought 'no way is this guy on the spectrum' but once she got beyond the veneer and found it more about my thinking processes her diagnosis was positive but on the mild to moderate end of the spectrum. My first reaction was 'wow, I've been really lucky to survive as well as I have' to which she replied 'it hasn't just been luck, you've also been very determined and dedicated', it felt great to hear this.

That's why I'm here. I'm self-suspected, and seeking evaluation (my first assessment appt. is in September). I feel like I'm a square peg trying to force myself into the world's round hole by pounding myself out of shape until I'm so beat up I don't even recognize myself. But it hasn't worked all that well. I've adapted some. I've learned some social skills. (I was 20 when I realized that when people say "How's it going?" they aren't really asking you for your current emotional state or how you're day has been to that point. Now I can "pass" but just saying: "What's up?" back.) But all the little tricks in the world haven't made me normal. They just help me "pass". I still can't look people in the eye when I'm talking (but I can when I'm listening). I still don't understand the point of parties, unless I get drunk enough that I feel uninhibited enough to just sit there quietly and not force myself to interact.

Anyhoo, zer0netgain, that comment really hit the nail.

I've read this entire thread, and I guess my only addition is this thought:

I've noticed that some Aspies are very guarded about letting other people into their little community. But I've seen a couple references suggesting that Asperger's may be as common as 1 in 150. Perhaps one source of the ire at that some here have displayed having so many people self-diagnose is that they've failed to recognize that their quirky little syndrome isn't all that quirky? Less common, surely, than a lot of things, like OCD or depression. But still: I think a lot of experts agree that AS is a) more common than people suspect, and b) underdiagnosed. Doesn't that mean a lot of people will be coming out of the woodwork to join the party?

My view on it is that I know myself. I've never bought into the programming that we're all to wait quietly until we're told what to think. How can a doctor tell me something about myself better than I can? If I was in anyway sick, or in danger of dying or in any kind of discomfort or pain, then sure, I'd go round to my doctor, point to where it hurts and ask "is that thing sticking out of my side normal?". Until my autism rings those kind of alarm bells, I don't plan on wasting his precious time.

I also didn't need my doctor to diagnose my gender, my sexuality, whether I was left or right handed, or any of the other things that I learned about myself throughout my life. When I learn something new about myself, I don't need to confirm it with a qualified practitioner before I decide that I really do prefer coffee, or that I have dry skin and might need to use some moisturiser every now and again.

If you've spent your entire life with everything just not making sense and not seeming right, and then you find yourself reading about autism and suddenly you've found your glasses and everything has snapped into focus, what other diagnostic tool can be more compelling? Do you really need to wait until you're patted on the head and told that you're right before you can decide that you've learnt something new about yourself that's helped make sense of your life?

You maybe need to go talk to someone about that instead.

For some, yes. That's going to be a personal decision.

It does help to get the outside perspective about how others see you. Otherwise we suffer from one-sided perspective. But ultimately, only you can decide how to interpret this information.

Yes, absolutely, but why does that person have to be a recognised "authorised" person, and not someone who's known you all their life and was there to witness the things, and not just hear about them from you?

Really? I've received nothing but welcoming, open arms since coming here, and I would say that it is extremely questionable whether I would be officially diagnosed with AS, AD, or PDD-NOS.


I agree, though I want to add that many of us who are very mildly on the spectrum don't really need the diagnosis, at least not "retrospectively" as adults.

I would also suggest that society (parents, doctors, etc.) be cautious diagnosing AS, especially in children. I think if I had received an AS diagnosis as a child, I wouldn't be the same person that I am today. Therefore it's important that the ASD labels really only be applied in situations where the person is really struggling and needs help. Some of us maybe float "under the radar," and if we are able to handle and cope and adapt on our own, I think that's the absolute best thing to do.

That's true, it does not need to be.

Exactly.
I was diagnosed with a string of alternative diagnoses throughout my life. all incorrect. Psychiatric unit for clinical depression. no ability to build a life after finishing school. immature

Noticed from birth and then dx'ed in babyhood? Depends on who was looking and what they were actually looking for.

Girl with an ASD in the Sixties and one of 8 kids, a mother who was too busy to look and who assumed our behaviours were the norm because they were so similar to hers!. Half my family rocked, or zoned out, one with learning issues and club foot, another rarely talked, two definitely ASD and eccentric ( me and a brother) and a family that was SO left of centre compared to the norm.
Commentary that we were talented, eccentric and unusual.

self-dx'ed age 46 AFTER I noted my nephew was HFA (then he was dx'ed at 3 years.) Further research, then fronted an ASD clinical psychologist. formally dx'ed. without a doubt.

In the 60's they didn't even THINK girls could be born with autism except very, very, very rarely.

In my age bracket you can go many, many years without a dx. Many on WP have.

Same here as with Danielismyname and millie, just another age category.

I wasn't recognised despite almost all 'red flags' and never knew about my autistic symptoms.

I may be on the totally clueless side with reflecting about others due to my autism. When I learnt about it I was like:

What, people do look other in the eye?

They read from faces and body language?

They feel sorry and happy for others?

They have only few routines?

Are you kidding me? That's abnormal!

^ Yup, Sora.



At age 36 I went to a rehab for my drug and alcohol dependency. In the first few months there, before I was guided towards SSRI antidepressant medications, I had episodes where I would bang my head against a wall repeatedly, hit things, rock and stim and leave groups because of explosive meltdowns. All the weekend, when most people socialised together, I was up in the art room on my own away from everybody. There were many indicators that suggested an ASD but the education of health care professionsals was not occurring in these other areas such as mental health and Drug and Alcohol. And believe me, these are two areas where professionals NEED to be well versed in ASD's because by the time someone with an ASD is falling into rehabs, psych units, prisons, homelessness - well - they are REALLY in need of help, diagnosis and a program of strategies to help them find a way to live with a little bit of much deserved peace.

All the signs were there then. they knew I had dual diagnosis issues, but even at my age of 36 ( 1998) they were not sufficiently aware of ASD's as a spectrum disorder and viewed it as Kanner's autism basically - with no shades or variations. They were not aware that there were a few adults coming into the rehab who were not only dual diagnosis but specifically undiagnosed ASD.

Thankfully that is changing now.

I am also in Australia.

In my case when I first read about Asperger's it was as if my whole life flashed before me,
such was the power of the revalation.Even so,although I instinctively knew everything fitted
I still spent 3 months of instensive study into possible alternative explanations before I
self-diagnosed.
I'd say that self-diagnosis is reliable,because no-one knows how a person's mind works better than the person themself

There are peer-review studies looking at twin studies to make it falsifiable if Asperger's and classical autism have any genetic relationships. Although you can't prove, you can falsify. Wouldn't that be making an important aspect of Asperger's falsifiable? Another example, Simon Baron-Cohen hypothesized that those with Asperger's/Autism have a problem with theory of mind and that affects their social abilities. So I find there's a peer-review study testing that, where they found high functioning autistic children less able to intellectually figure out social perspective taking compared to ret*d Down Syndrome children (much lower IQ) on a test given, making the theory of mind in autism falsifiable. I could be wrong, but if you make a testable hypothesis comparing autistic children to Down Syndrome children in perspective taking, doesn't that say something about what may possibly affect social abilities?

Isn't that using the Scientific Method?



I agree with peer-review. I've looked at peer-review studies for fun since I was in high school. To me, whether something is scientific means three things: 1. It's testable (meaning both falsifiable and generates predictions); 2. It uses public verification (both peer-review and studies can be replicated/verified); and 3. It uses systematic observation (there are many things in Science not directly observable, like Einstein's General Relativity, but they're still Science because they use indirect observation to make them falsifiable and generate new observable predictions).

If Asperger's is tested using studies in peer-review journals (public verification), uses p-values/specific observations for hyptheses in the journals (systematic observation), and is set up in a way that future evidence could possibly make it labeled as not Autism Spectrum Disorder or even a disorder at all (testable), then I would think Asperger's is in the realm of the Scientific Method? Yes, it's definitely no where as solid as physics/plate tectonics, but how would it be pseudoscience as others have said they think it may possibly be?

You asked what I see falsification as:

To me falsification means it's always possible you can logically disprove something. There are varying degrees, and when the predictions are more risky it's more falsifiable and scientifically sound. Let's say there's a rule, "If I'm in Los Angeles then I'm in California". If I find out that I'm in California, that doesn't prove I'm in Los Angeles, affirming the consequent, there could be another rule saying "If I'm in San Diego then I'm in California". However, if I find out that I'm not in California, then modus tollens deductive logic says I can't be in Los Angeles. It's logically possible to disprove being in Los Angeles, although you can't use deductive logic to prove. So in Science, you make observations. Then you make models/principles/explanations. Since someone can always make ideas after the fact and tweak the evidence to fit your ideas, the Scientific Method says the model has to be able to make testable hypothesis in new situations in the future; it doesn't have to necessarily be lab experiments but can just be predictions in the real world as happened with the testing of Einstein's Relativity and the bending of light around large bodies of mass. To test an idea, you say, "If theory A is true, we predict observation B will happen." If observation B doesn't happen, and your two starting assumptions and experimental conditions are correct, then deductive logic says theory A is false. The conclusion is just as correct as the starting assumptions. However, if observation B does happen, deductive logic doesn't guarantee theory A is true, even if all your starting assumptions are true, just like if Los Angeles then California doesn't mean the reverse if California then Los Angeles. That's why they say you don't prove in Science, but only disprove and fail to disprove. Then you try to rule out alternative explanations, but still only fail to disprove. However, when they say you can't prove but only disprove, it only applies to deductive logic because one of your starting assumptions may be false. Scientists still say it's much easier to disprove than to prove a model.

Yes, the definition of "psychological disorder" is arbitrary. A psychological disorder is: 1. Abnormal; 2. Interferes with one's life or others to the point it's clinical and need professional help; 3. Is Chronic. However, in physics, they measure time in seconds, and temperature in degrees. Can you prove one second is one second, or one degree is one degree, or is it arbitrary? They allow it because once you can identify something as one degree, then you can make meaningful testable hypotheses. Likewise, I would think if you can identify a behavioral pattern as fitting those three criteria of a disorder and it's a given that professional help is needed, then peer-review journals can make testable hypotheses about it. Examples would be the twin studies comparing it to classical autism, and also the making of hypotheses that high functioning autistic children would have more problems with areas of perspective taking compared to Down Syndrome children, both in peer-review journals and using testable hypotheses.

I initially self-diagnosed. When later diagnosed, I was told I was clearly on the autism spectrum. I lived for 3 decades unlabelled (apart from with things such as anxiety disorders). I was referred to secondary mental health services because my doctor suspected more was going on. However, those working in these services hadn't the first clue about ASDs and continued to treat my anxiety, and very inappropriately. I self-diagnosed around that time, ended my contact with these services, and sought formal diagnosis. If I hadn't done it myself, I'd have gone through the mental health system indefinitely and may never have received an accurate diagnosis.