Self-diagnosis

Post Reply New Topic

Never said it negatively affected me, it doesn't affect anyone I'm just sharing my own opinion.

A person is allowed to feel good about finally having a diagnoses, I know the feeling, I had a good feeling of explanation but it's not an liable excuse to just diagnose yourself. If you wanna diagnose yourself because it makes you feel good go for it but I'm just saying it's the equivalent of diagnosing yourself with cancer in my opinion.

Again, let me reiterate, a self diagnose is NOT the same as saying "I feel as though I may be autistic" as long as they can admit, they might be wrong.

The doctors who diagnosed me might be wrong too who knows. I'm just giving my two cents

I personally feel the medical community has, in part, created its own monster.

I allude to the public availability of diagnostic manuals such as the DSM, and public availability of autism screening tests.

If they were all strictly confidential, no member of the public would know with full confidence what the diagnostic criteria are for conditions such as autism.

With the benefit of this being: only those who are truly having difficulty would go to the doctors.

We also wouldn't see what we see on forums such as this i.e. 'I know it's autism, and I'm just going to keep going to different doctors until they tell me what I want to hear'.

At best, someone would say 'I'm having difficulties. I went to the doctors, and they didn't help me with my difficulties. So, I'm going to go see a different doctor'. This is very different from seeing many doctors due to what is believed to be a false diagnosis (which I'm not saying doesn't happen).



I think it's a question worth asking i.e. if you weren't aware of the diagnostic criteria, would you continue to go to the doctors to address your difficulties?

Asking it of yourself requires a very high level of honesty.



I'm not saying the above is perfect - but it is something the medical community should have given consideration to (it would have been difficult to implement, though).

I don think this applies to me since I was completely unaware of the diagnostic criteria and actually unaware that I was even being evaluated for anything at the time of my diagnoses.

So much has changed in my life time, in relation to autism and other mental conditions, rate of change is something that can only be fully appreciated from past experience.

When I was a child there was no diagnosis of HFA or any accommodations. You were either in normal school or special school, nothing in between.
When I was 10, a friend of mine who had an obvious genetic abnormality, he was over 6 foot tall at the time, died during a PE lesson. He had been forced to exercise even though he complained of, and anyone could tell just from looking at him, that he was seriously not well. It turned out his heart was too small, and had not grown at the same rate as the rest of his body. If he could not be given any reprieve, you should be able to imagine what the response was to those with hidden issues.

At this time discipline at school was enforced by violence. Any talking in class would be rewarded with a wooden blackboard eraser to the head, or a chair thrown at you. Anything more disruptive would result in being beaten with a shoe or a cane.

No one seemed to question my school results falling, when I transferred from a small village school, where everyone knew each other, to a large comprehensive school with a couple of thousand children. Massive sensory overload, incessant bullying, and the threat of detention and having to find my own way home resulted in me trying to spend the least time at, and then leave school at the earliest possible oppourtunity. A habitual truant with no exam results and absolutely no prospects.

Fast forward 20 years, after multiple dead end jobs, dropping out of a university degree after 3 1/2 years study, a couple of periods of homelessness, trouble with the police, a couple of occasions where I narrowly avoided being sectioned, and numerous other problems that I really don't want describe here. I finally stumbled on ASD while listening to a radio interview, living and working alone in a boat yard at the end of a road, miles from anywhere.

It could have been me on the radio, everything fits, wow, what a revelation.

After years of being off of the radar, someone I had met convinced me to see a doctor about depression, the subject of ASD was discussed and an appointment was scheduled. After a 15 minute chat with a Phsycologist I was told I was not on the spectrum, and basically should just toughen up and get on with life.

Obviously I was massively deflated, massively...... and then spent another few years in mental soup. During that time I started working with young people with behavioural issues and SEN. A couple of the carers highlighted some comparisons and I found wrong planet started reading about the subject. After a few years of reading, it still made sense to me. I went to see a new doctor, asked to be referred again for a proper assessment, after 8 months waiting, I received a letter saying that assessments for adults are no longer being funded due to budget cuts.

I can't afford to go to a private assessment, but I have now had this question mark hanging over my head for over ten years. If i am on the spectrum, then possibly all the other treatments I have been given for my mental health could have been better targeted and have been more effective. I would like the question to be answered once for all. I deserve that from the system that I have contributed to.

I did not invent the term Self-Diagnosed, it's a term that I'm reluctant to use and fully support it being changed to something more appropriate. I have never claimed to advocate for anyone apart from myself.

That's my story, the short version, take what you want from it.

Last edited by neilson_wheels on 06 Jun 2016, 6:47 am, edited 1 time in total.

Of course, and I completely understand & appreciate your position.

I liked this post a lot. A lifetime of exclusion has made me too allergic to this mechanism. I detest closed clubs, and I detest the kind of language that somehow defines autistic people as a different species than their own families. We are all human.

I can't say for sure that I'm autistic, but if it turns out that I am, I certainly don't want to police people like goatfish57. As far as I am concerned, he has every right to his opinion, and he has every right to make his own life decisions, and to come here and talk to people about his problems. The moment WP membership becomes something exclusive, this site has lost its purpose.

It's entirely true that ignoring or misdiagnosing a mental health problem can make it get worse, still every person has the right to do what they please about it. I dislike the thought of 20 year olds instructing people twice their age on how to live their lives.

I was also completely unaware of the diagnostic criteria. I did not even know of the existence of the DSM until several months after I had begun my research. And not everyone has access to a doctor. Not everyone can pay a doctor. Right now I have no insurance and I have not been able to get any. No doctor will see me for anything. I have been trying to find one who will see me for months. The only way I could get treatment for anything is if I pay out of pocket. I can't afford to do that even on payment plans. So I can't afford to see a doctor about anything unless it is life threatening. And I have even wrestled with the thought of if I were in a life threatening situation, should I just choose to die because I can't afford a doctor's bill and my answer to myself was yes.

And ZB, I understand what you are saying. You and I have different definitions of the word self diagnosed person. I use it to mean someone who has done an extensive amount of research for his own private and personal needs, and has identified with a condition that he feels fits his symptoms. I am not talking about a legally binding document that stands up in court.

Here is the Oxford dictionary definition of the word Diagnose:
Identify the nature of (an illness or other problem) by examination of the symptoms:

Here is the definition of self diagnose from dictionary.com
the diagnosis of one's own malady or illness.

Here is the definition of the word diagnosis from Merriam Webster
Full Definition of diagnosis
plural diagnosesplay \-ˌsēz\
1 a : the art or act of identifying a disease from its signs and symptoms
b : the decision reached by diagnosis

Nowhere in these definitions does it specify that it has to be done by a doctor. If you want or need a formal legally binding diagnosis that stands up in court, than a qualified person has to give you one. But if you don't need or want that than by definition of the word, a doctor does not have to give it to you.

Now I have no problem with you using the term speculation or self assessment or whatever term you use. But if I choose to use the term self diagnose to mean the same thing, there is nothing in the dictionary definition of that word to say that I can't.

Last edited by skibum on 06 Jun 2016, 7:02 am, edited 2 times in total.

I would keep living off my husband, get into stupid fights with people and isolate myself until I got old and sick and died of something. I am less and less able to go the doctors for anything. I'd rather be in pain than have to deal with them. Pain I am used to. Disrespect gets harder every year.

But you were given an answer. I quote you from earlier in your thread:




But apparently it's not the answer you wanted to hear.

Maybe the psychologist felt your communication skills etc were sufficiently functional to all but rule out proceeding with a full diagnostic assessment?




There is a perfectly valid & appropriate term:


'I suspect I may be autistic'


The worrying part is why saying the above just isn't adequate for many.

Your assumption is wrong.

I agree. I can respect what anyone has to say at any age but I don't appreciate someone young enough to be my grandchild dictating to me how I should be affected by something that I have had to live with, struggle though and painfully figure out and survive my entire life especially when I had to do it alone with no help for my specific issues from anyone. And no, ZB, this is not directed at you. I like you very much. But I do think that your perspective would be different if you had been diagnosed as an older adult.

Another answer that ties in with the first: No, I wouldn't have gone to see a doctor, because I wouldn't have considered any of the things I suffer from to be medical issues. I have always been told I am oversensitive, and that I am imagining that I am sensitive to light. The rest of the problems can be summed up as lazy, selfish, stupid, arrogant, picky, aggressive and overexcitable. There is a label for everything, it's just not a medical label

I was not aware of autism (other than the Rainman type) until I was 30. Until then, my best guess was that I might be an observer from another planet who'd had my memory wiped to protect my cover. My mother, who likewise never heard of autism, thought me a shy, eccentric genius with no common sense (not entirely untrue).

Isn't it great that all these teenagers grew up in a world aware of autism, so that now they can dismiss and belittle people who did not have that advantage? Ah, progress.

1. I suspect I may be Autistic
2. I think I have Asperger's
3. I did years worth of research so I am pretty sure that Autism is the condition that fits me but I don't have an official diagnosis

What's the difference and why are so so picky that we care? These are the kinds of statements that most of the self diagnosed people use. And if they say something more definitive, all you have to do is ask them if they have a diagnosis and they will tell you. If they don't want to tell you, just don't take them seriously. If you are on an internet forum and you question someone's credibility no one is stopping you from asking them if they have a diagnosis. If they say yes, than you have your answer. If they say no than you have your answer. If they don't want to answer than just ignore their posts or in real life, just don't pay attention to them.

I would have never gone to the doctor either for my Autistic and Misophonic issues because I was always taught, by doctors and nurses, that there was nothing wrong with me. My family is full of doctors and medical people but back then no one knew anything about HFA especially in girls. If I had not been diagnosed, which first started with my own intensive research and "self diagnosis," which, in turn, is what eventually led me to pursue a formal diagnosis, I might not have survived the big Autism Burnout that I had last year.

Last edited by skibum on 06 Jun 2016, 7:29 am, edited 1 time in total.

Skibum, you're a very sensible person to consider that someone might be hurt by what I said. I'm sorry guys, I don't mean to attack anyone in particular - it's more an answer to a bunch of posts I've seen on this site over time. And yes, the people making these anti-self-diagnosis threads are very often young, and they are very often male.

I don't know what it was like growing up you, but it's smart to consider that older people have very different experiences than yourselves.