Self-diagnosis

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My uncle died because every doctor he went to kept misdiagnosing him. He was always in pain so he would go to the doctor for it and they would discredit it and give him pills instead for the pain to go away. Then one day in July right before my 30th birthday, he collapsed in his home and couldn't move and he was in tremendous pain. He called 911 and the ambulance came and got him and took him to the hospital. It was very serious so they flew him to another hospital 60 miles away and they found out he had cancer but it was too late to save him because it had spread through his body too far. So four days later he died all because of incompetent doctors while my mother had only found a lump on her leg so my dad took her to the hospital 60 miles away where she worked and she was in pain and they checked her out and said it was cancer. She has had it for months but no one wouldn't have caught it then. They would have just told her she was stressed out from working too much and to give it a rest. She was always tired. Now with the lump, it was cancer so they did tests and diagnosed her and she had to go through treatment for it to kill the cancer cells. I hear if you have very good insurance, you have better luck getting a better diagnoses and better treatment.

My insurance didn't cover the WAIS, so I didn't take it.

In total, I spent like $550 after insurance for the background interview, the testing, and the follow up.

My tests were:

Clinical Interview
IVA+ Continuous Performance Task
Conners Adult Attention Rating Scale
Wender Utah Rating Scale
Autism Diagnostic Observation Schedule-II, Module 4
Adult Asperger's Assessment
Personality Assessment Inventory
Beck Depression Inventory-II
Beck Anxiety Inventory
Incomplete Sentence Blank, Adult Version

Funny thing is that there is disproportionate amount of medical doctors in my family including my father and I know how a medical diagnosis is done. We also have psychiatrists in the family and I know how they diagnose things as well. Truth is, often times, it's just a bunch of guessing.

Last edited by skibum on 05 Jun 2016, 9:34 pm, edited 1 time in total.

Oh ok. That is still a good list of tests.

Yes. I'll give one below.

The danger of autism being seen as some sort of 'right' or a 'movement' is many individuals will feel invalidated or somehow denied if they don't receive the diagnosis.

Bernays proved this almost 100 years ago with his convincing of women to smoke cigarettes by leading them to believe not being allowed to smoke was a violation of their 'right' to smoke.

Activism works by convincing others they are being denied a right, the product of this being the individual seeks this 'right'.

And the danger of this is: many individuals will seek a diagnosis when they have the symptoms but not the associated functional difficulties as they see it as their 'right' to be identified as autistic, and they see the medical community as denying them their inalienable right.

Hence the hostility so often seen on this very forum against the medical community. Or rather, against those who don't give the desired diagnosis.

Many undiagnosed see it as their right to be diagnosed.

This is dangerous as:

a) Autism is disorder of function, not a rights movement, but possibly more importantly,
b) There is only so much money to fund autism. The more people are diagnosed, the thinner the resources become/the need for funding exponentially grows.


I am in no way against someone seeking a diagnosis if they are having difficulties as a product of their symptoms.

But I am completely against someone seeking a diagnosis if they see it as their right to be diagnosed, or if they have the characteristics of autism without the associated functional difficulties.

I have no interest in such individuals as they are draining much-needed resources from those who are genuinely struggling.

And I don't mean 'less for me' - I am one of the lucky autistics who manages to generate income.

I mean less resources for parents/carers/autistic individuals who cannot make a living. And other autistic bodies requiring funding i.e. school services etc.


So: it is dangerous as the funding/resources available for those who require such resources as a product of their autism may not be available as a direct consequence of those who see autism as a right seeking a diagnosis.

And so it begins. Again, as with the other 'self-diagnosis' thread.

My reply to you was entirely objective.

Your reply is an ad hominem.

Therefore I refuse to address anything you say.

Oh, by the way, I am not Autistic. My diagnostic report is not in my actual medical record. So please disregard everything I have ever posted about my experiences with Autistic issues because it is not credible. Just treat it as total and utter BS.

A medical or neurological condition is not defined by how many lawyers and insurance companies will be able to make a contract with you. If lawyers and insurance companies did not exist, Autism still would. People who live in areas where there are no medical services still have medical and neurological conditions.

Last edited by skibum on 05 Jun 2016, 10:02 pm, edited 3 times in total.

That is so sad and unfortunately so true.

Sonic, please provide written evidence, other than your own, to show that someone is not Autistic unless he is diagnosed.

Thank you for explaining your logic. I see what your understanding is. And I appreciate your understanding. But I don't think that people see this a right or as a movement like you think they do. I think people are genuinely suffering and because they are suffering they are seeking help for their suffering. If I am genuinely suffering and I seek help and cannot afford to get it, I have to find an answer for my suffering. If I am not genuinely suffering, I am not going to waste my time trying to research something if I am not being affected just so that I can feel like I have this right to claim it. I am not going to actively fight for that.

But if I am suffering, and I cannot afford to get diagnosed, I will have to do the research myself to see if I can understand what is wrong. I am very aware of my body and my body's responses. I am very aware of the difficulties I encounter every single day of my life. I am very aware of my social difficulties and my executive functioning difficulties, they are not mysteries to me. I am very aware of my sensory issues. I can do extensive research and see that I have the criteria to match the diagnostic criteria. In fact, both the person who first told me I was Autistic, and the person who diagnosed me said that my symptoms were so obvious they could tell from the very first moment they ever saw me and that they did not even need to bother with the testing because it was so obvious. I have known my symptoms and traits intimately since I was a child. They are not shady, they are very clear and very distinct. So if I read a 400 page book about what Asperger's is and find myself clearly on almost every page and if every single thing I research and read for 18 months confirms that, I can safely say that even without a formal diagnosis, I believe I have Asperger's or whatever we are calling it nowadays. And if all of these traits and symptoms were strongly present in my childhood, I can say that I believe I had it then too. And because Autism is, by definition, is a developmental disability that you are born with, and there is medical evidence that it develops in the second trimester of pregnancy, it stands to logic that I have always had it. And if I can't afford to be diagnosed, I am still suffering from this condition.

This is not about some kind of movement I am trying to join like the women's rights movement or something. This is a condition that is present in my body and in my life and always has been. People who self diagnose don't do it to toot their horns in some kind of movement. They do it because they are suffering and want to know why and if they can't afford to be told why they have to do what they can to figure it out themselves. And if they find that the condition called Autism fits every single one of their symptoms they have the right to say that they think they have it. And if they end up being wrong, than that is ok too.

And as long as they are honest and open about whether or not they have an official diagnosis, no one is going to be harmed if they talk about their experiences.

Now you have not said anything about people who do get a diagnosis and talk about life from an Autistic perspective and then end up finding out they were misdiagnosed. Do you think that that does not cause any damage? I am curious.

I don't think a lot of adults seek diagnoses if they are not suffering. I have heard of people who do seek them for their children in order to get financial benefits when their children are not really suffering but I don't think that is a big issue with adults. And people who self diagnose are usually adults. The reason they self diagnose in the first place is because they are suffering. The reason an adult will seek a diagnosis is because he is suffering.

I have just read something that had spooked me. Is it true that Asperger's/autism is overdiagnosed in recent years?

I'm really worried that the specialist I go see will laugh me out of my socks and tell me something like "Oh yeah, I had 20 other people tell me that today." I'm worried that I won't be tested, or testing will be biased because of all the fakers. I would have preferred that they could just do imaging and not talk to me at all.

CAPTCHA won't let me post with quotes, so italics are comments by League_Girl:


Wondering if you have autism or not is not a self diagnoses.

See, this is where I think there's a difference of understanding. I can't imagine anyone actually saying "I definitely do have autism", when they've not been officially diagnosed. I've also never seen someone do this.


I guess where I come from is my mother has always taken me to doctors but she was never looking for a label. She was trying to figure out how to help me and figure out how my brain works. If any doctor suspected anything in me, I was sent to get tested for it. If my school tried to say I had this problem, my mom would take me to a professional to get a professional opinion. When she didn't know what to do with me, she took me to another psychologist but she wasn't looking for any labels. So to come online and see people think they have a condition and then go to a doctor and bring it up, it's foreign to me. I get that people who grew up different, they always want to understand why and want an explanation so they come across a condition they feel that fits them, then they will do deep research about it to understand more about it and then they have ah ha moments when they read posts online by other aspies and relate to them. I think it's pretty normal to want an explanation for why you're different and why kids always found you weird and why you were always rejected and why you had other negative labels from your peers. But it's now always autism because there are many labels out there that share the same symptoms.

This is it, though. You are coming at this from the perspective of a child receiving help. For adults this isn't the same.

From an adult perspective, all of these things are your 'normal'. I never assumed that I had a diagnosable condition. I'd grown up with all of these issues and no hint that they were anything other than 'me'. They were just who I was. Therefore, despite all of the struggles, no reason to go to the doctor.

It's only after you realise that you fit the description of a diagnosable condition that you seek help. And to seek help without being a total idiot just jumping on the first thing you see, you have to do a lot of research first to confirm or allay your suspicions. By the time you reach the point where you're seeking medical help, you will be 99% sure because of the research that you've done.

No sensible adult is going to go to the doctor for issues that they've had their whole life and have never considered to be anything but their 'normal'. Being taken as a child by a concerned parent is a very different ball game.

It is yes IMO. What happens is schools get more funding for kids with disabilities so if they can just diagnose them with something, they will get a funding for it so they can help them. It happened to my son. It's not a real diagnoses but it's a academic diagnoses. What they did was they observed him in school and they did two autism tests and one of them was the CARS-2 and he got a 32, the cut off is 30. I think they had pathologized him. It's not like they exaggerated, he was having problems in school but it's not always autism. There are other possibilities for symptoms a child is displaying. But with more awareness on autism and funds for it, people will see it more. I believe they did it for the funds because my cousin said our state here gets more funding for kids on the autistic spectrum so I find that a relief because it means I didn't screw up while talking to them about my child and what I wrote on the papers about him when they were doing autism testing asking me questions about his development and behavior. I think they just looked for "proof" because they want to help him so they found a way to make him qualify because he is visual and needs visual cues and the fact he has a hard time with transitions. These three here are consistent because he has those at home too. So the autism being over diagnosed thing could be with children only for school. And over diagnosed could mean adults are getting diagnosed when it's not necessary because it's not impairing their life. I understand that people would want to go see if they have autism or not to confirm their suspicion and to explain their past and their differences. I forget the source where I saw somewhere that overdiagnosed doesn't mean they don't have it, it just means the diagnoses is unnecessary. A diagnoses is supposed to be made when the person has an impairment and they are struggling.

Is it possible to have autistic features and not be autistic, yes. If they don't impair you and impact your life, you are not autistic.

Well tomorrow (Monday) my son will finally get his assessment done at the developmental clinic to see if he has anxiety or autism, or ADHD.

I disagree there because I have known some Asperger adults who have accidentally gotten diagnosed with it because they were going to therapy for anxiety issues or because they kept having problems at each job so they realized it had to be them but they didn't know what was going on. So yes some adults do go for help when they are knowing they are having a problem or realize it's them with it because they keep running into conflicts. Also if you recognize that things seems to happen to you more than others, you also know something is wrong. That was how I knew. Plus I saw how different I acted from other kids because they didn't act the same way I did so I knew I was different. But I just didn't care then until I reached puberty.

Once I stubbed my toe, it was one of the worst pains I felt and it wouldn't go away, it became swollen and blue and I could not move it, not even manually. I was sure that I broke it, but when I got an X-Ray turned out, it wasn't broken at all, the ligaments were damaged.

My point being: you can't just assume things. Even if your sure that your sure you could be wrong.