Why I Feel That Self-Diagnosis Is Valid With ASD

[Jojo_LB]

Well, most of us here can definitely live with continuing on the discussion. Besides, I'm not bothered by having these types of discussions and someone disagreeing with me. But yeah, good move on taking the word "deceit" back, 'cause that was actually what was quite bothersome about it.

 

[Nitro]

Given the subjective nature of a professional assessment vs a self-diagnosed one, neither side can guarantee to get it right.

Opinions are going to vary on each side of the fence, so please conduct yourselves accordingly and don't take it to a personal level.

Please keep in mind that the forum rules apply to all areas of this site, and treat each other with respect.

 

[Fino]

I maintain that it has primarily to do with a person's faith in doctors. Those who scorn those without "professional evidence" clearly think very highly of a doctor's opinion. Those who see it as unnecessary clearly think the opposite.

At first, my opinion was, "Yes, everyone self-diagnose, no problem," but then I realized that I was committing the same error that I have throughout my life, which is thinking everyone as being similar to me.

I am confident in my ability to self-diagnose.
I am not confident in the majority of others' abilities to do much of anything.
Therefore, I believe most should seek professional guidance.

If a person feels confident they can self-diagnose, I am happy for that person and have no problem.
The majority at this forum are nothing like the majority of others and so if I were to pretend this population were the only population, then my confidence in the ability for pretty much everyone to self-diagnose would be as high as it is for myself.

The end.

 

[Fridgemagnetman]

I just don't understand why someone would want the badge personally

Do you think people who self diagnose want the badge?
It often comes after decades of a torturous life,being lost,alone, a whole bunch of negative experiences.
The realisation can be a relief plus the start of a new journey.

maintain that it has primarily to do with a person's faith in doctors. Those who scorn those without "professional evidence" clearly think very highly of a doctor's opinion. Those who see it as unnecessary clearly think the opposite.

People like to have some resolution.
The reality there is far more doubt in many things .
To venerate any authority always seems like a mistake to me.

I'm more towards ' think of yourself in a way so that you can live successfully.'

 

[Kyou Nukui]

I used to not know anything about autism or any of the mental illnesses or personality disorders. I did think that I was severely and fundamentally nuts. Nutty as a fruitcake from very early in my life (if not from birth).

I started to discover various mentions and discussions of personality disorders on the Internet and then self diagnosis questionnaires, and I thought that maybe I had social anxiety, oppositional defiant disorder, avoidant personality disorder, dependant personality disorder, anxiety and depression, selective mutism, etc. and then I found pathological demand avoidance.
I hadn't found anything that fitted so well with my own experience as the descriptions of PDA; but I felt that it was likely that I have other problems besides that. I wanted to know what was the primary problem and what might be secondary or what might be self misdiagnosis.
So I sought an autism assessment. It wasn't easy. A lot of things had to be done to qualify for the assessment. It took me nearly a decade to get assessed after first beginning to read about PDA and autism, and about seven years from when I got to talk to the CPN (community psychiatric nurse).
This was partly/mostly because I started out by not trying to lead the CPN to a specific condition, but let her figure it out so there would be no bias (and in case the affront to the profession of a mere patient thinking they could self diagnose caused a negative bias). By the time I actually got the autism assessment by specifically requesting it I "knew" that I am definitely an autistic person.

I have the official diagnosis now The assessment only took about an hour. I certainly knew more about my mind, behaviour and experience, and how I fit the description than the autism assessment person did from meeting me once, for one hour.
I still felt that I needed a professional opinion in case I was missing something important.

I still wonder what other conditions or disorders I might have. I know I have SM. I don't know if anxiety and depression is just a part of the autism or a rational response to having a horrible life. I don't know if I can be the judge of what personality disorder I may have. But it seems that now I've had a diagnosis of autism the NHS is done with me and I won't get any further information or assessment from them.
I will try to self diagnose again in the future, and hopefully when I have decided which condition I am most likely to have I'll try to get assessed for that. I know now that I cannot get any help by saying that "I am absolutely batpoop crazy so please tell me what kind of bat". They have to be told the specific condition to assess. Meaning self diagnosis is the only way to get a diagnosis. In my experience.

 

[inkfingers]

I diagnosed myself when I was 18, after years of not fitting in and having difficulties making and keeping friends. I felt like something was wrong with me. Why couldn't I understand sarcasm and body language and other neurotypical things? So, I Googled my problems and eventually the rabbit trail led to autism. I got a professional diagnosis a few months later, mostly to solidify my suspicions. I was 95% sure I had Autism, but I HATE uncertainty, so I went to see a professional.

 

[Hollow Horse]

Do you think people who self diagnose want the badge?

Not all, no - but there are some.

I made my point, if somewhat clumsily and will now step out and let the discussion continue.

Meaning self diagnosis is the only way to get a diagnosis.

Just one example of why this is my last contribution to this topic.

 

[Suzanne]

I was self diagnosed for some years, because I thought I had no chance of being formally diagnosed.

It happened relatively fast for me, to be diagnosed and it is a strange feeling, because a lot of me shakes the head with incredulous that I am on the autism spectrum. I guess I do not believe it, which is bizarre, because when self diagnosed, I did believe it and now official, I am doubting!!!!

I am unable to function in society due to autism and social anxiety and extreme agrophobia and so for me, that diagnosis is important, to get financial aid ( however, I feel horrendeously ashamed to ask for it).

My husband's attitude as changed to, towards me, since he was alongside me, with the process of being diagnosed.

My psychiatrist immediately diagnosed me with social phobia and ptsd and when I told him that I believe I have agroaphobia too, he shook his head and said: no, I don't think you do, despite the evidence screaming at him!

On my piece of paper, it shows that I am grade 2-3 which means I am on the edge of medium to severe autism ( but high functioning) and yet, for some strange reason, my psychiatrist down plays it!

I have spent my life struggling and now have the answer to why.

 

[Nauti]

I have no doubt, at all, about being on the spectrum. Mostly, because of my Dad. He is just so classically Autism 1, it's not funny. I am very like him.

I had been diagnosed with other things, depression, anxiety, then ptsd, but it was only after my dad visited last year and I got soooo dysregulated, just from him coming up from Melbourne for 10 days, that I started to, seriously, look into AS/Aspergers in women as an answer for my particular challenges .

My routine was upset and even though I love my dad dearly, and I know I am a lot like him, I really couldn't cope with the change to my lifestyle, having him visit. I couldn't shake the feeling that the autism, I had suspected, but kept being told "no, you have too much empathy to be autistic", might be why. I just couldn't shake that that feedback felt WRONG.

I spent some time as a psychiatric inpatient, after my Dad's visit and got told that "I'm too warm" to be on the spectrum and that everything, I was struggling with, could be attributed to trauma.

As soon as I started doing research, as soon as I looked into Aspergers/Autism 1 in females, it just fit SO WELL and I felt so many things click into place.

I stopped comparing myself to other NT people, to other mentally ill people and to other people diagnosed with ptsd, because something else was going on and I KNOW it's Autism, the Aspergers type.

I do want diagnosis and am going to tell my GP, on Tuesday, that I figured out that I'm on the spectrum.

My dad's other daughter, my half sister believes she is too, her son is already diagnosed and she believes her 5 year old daughter is too.

I have a son in supported accommodation who is obviously on the spectrum, but people who can diagnose are not too prevelant in my area and diagnosis is very expensive. I will have to go to Brisbane to get it and have $1000-$2000 spare. I live rurally, well in a small town, in a regional part of Australia, I am unemployed and I have many children. I think my autism is one of main reasons I have so many children and why I do not have a job too.

My son and I, and even my dad, remain undiagnosed.

It's made my life much easier, figuring out I'm on the spectrum. I don't give myself a hard time for being unsociable now, but I do push myself into certain social situations.

I already recieved disability financial support, after a breakdown from long term abuse, as I have had a very difficult life and when I got my pension I was very, very unwell, unsupported, homeless and it was very easy for me to claim and receive benefits. At the time, I was diagnosed with Borderline Personality Disorder, which I DO NOT have.

I couldn't be more different from the BPD people I know, as I'm very agreeable and I can't stand drama and conflict and I'm very nurturing and naturally self sacrificing for my children and partner, particularly.

I've worked since young, helped a lot of people, had a lot of responsibilities and done it pretty tough. But now I am a burnt out shell of what I used to be, due to the ptsd and trying to "fit in", "blend in" and " mask".

I'm very intelligent, but also very sensitive and not socially at ease, even though I used to be a pretty dynamic performer and entertainer.

I've never figured out how to make a living though and I really want to learn.

My disabilities are marked, I still can't drive a car well enough to get my licence and I am 46, I struggle to leave the house and make friends, and I have executive functioning and neural processing issues, but, then again, I have significant strengths, I am very creative, intellectual and a deep thinker and I am caring and honest.

I wish I had recieved the support I needed, when I was younger, I would definitely have an interesting career, if I had, and I wouldn't need disability support money. I probably wouldn't have had all my children though, nor would I have the wisdom, resiliance and compassion that I have developed, from surviving all my hardships.

I am glad I figured out I was autistic, it's made life (my life and myself; my tendencies and difficulties) make a lot more sense, and I have made the necessary accommodations for myself, because of figuring out what's up with me and my life is much, much better for it.

 

[Progster]

I don't think that calling oneself self-diagnosed is being unfair to those who have an official diagnosis, or that it is in any way trivialising the condition.

There are a number of valid reasons why a person might not have or even want an official diagnosis. Firstly, that it is every expensive and they might not be able to afford it, or they may not have health insurance to cover the cost. Secondly, they may feel that they don't need the diagnosis because they are coping well enough and and don't need support from social services or any knid of accommodations. Thirdly, they may not like the idea of having a label that might brings them stigma or other difficulties.

There are many people like myself who grew up in the 70s and 80s when only the very severe cases were diagnosed, who probably would have received a diagnosis had they been growing up today, and their not being diagnosed does not mean that they can't be autistic, or call themselves autistic, if they have done their research and recognise the traits in themeslves - if a person believes themself to be autistic, then there is likely a good reason to do so. Every adult who is diagnosed later in life goes through a period where they suspect they have autism before receiving their official diagnosis, and I too was self-diagnosed at one point. At the time I was diagnosed, I had quite a few severe problems, and my suspecting or self-diagnosing at that point does not in any way diminish either my own issues or those of others. In fact, saying that one shouldn't self-diagnose is perhaps unfair, because when people reach that conclusion, it is often after years or hardship and difficulties, often accompanied by depression and anxiety.

However, it is important that those who are self-diagnosed should make it clear that it is a self-diagnosis and not an official diagnosis. I now believe that I may have ADHD, but I have not been diagnosed with this, it's just a suspicion based on strong evidence and any reference I make to this will reflect that; I will say that I suspect I have ADHD, or that I have strong traits, or that I may have ADHD, but I can't claim that I actually have it without the official diagnosis, and I think a similar thing should apply to those who self-diagnose ASD.

 

[Tom]

For me, the 'Duck Test' is good enough.

"The duck test – "If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck" – suggests that something can be identified by its habitual characteristics." (Wiki)

But there will always be ducks and non-ducks that will not accept it. With those I generally use the 'Ignor Function'.

 

[Aspychata]

My ex, psychiatrist, was a self diagnosed BPD, he never had it officially dx. He said meds aren't good and he refuses to take them. l read about BP, he fit one of the classifications, the 3rd classification of the DMS. But number 3 is a bit of a gray area l noticed, still l could see he fit a lot of the filters listed. Meds are hit and miss, and he treats these people all the time. He said l had something, so its official, haha. l have been diagnosed, with what who knows? Anyways, the people that do the diagnosing often have issues themselves, thats why they entered the field. l sum up this banter by saying if you self-diagnose, who cares, because your MD maynot make a correct diagnosis based on their limited experience. So what is wrong with self-diagnosis? His expertise is that he can usually find meds that help stabilize a client quickly, however BP is actually one of the challenging mental disorders to treat, because of the horrible side effects of their meds, basically lithium.

Self-diagnosis helps us really examine ourself, means that we are open to the fact that we respond differently, and creates a acceptance of who we are and any limitations we may feel we have.

 

[Tom]

There's downsides to not having a diagnosis of course. For me, the absolute worst is it disqualifies me from being able to participate in most of those wonderful research surveys. How I love those surveys. Sometimes, I must confess, I just pretend to fill them out, hoping to get complimentary donuts. But that is deceitful and makes me feel real bad.

 

[disconnected]

I just want to add- there is a misconception. I have a DX. All in all I spent about 4 days being tested. For some odd reason it seems people without a DX tend to illustrate an idea it’s a 3 minute “yay or nay” consultation. As previously stated by others, a clinical DX identified several other items that can be treated that I was not aware of.

 

[Nitro]

A situation that occurred on this forum was the night I cornered a neuro-psych that specialized in autism and asked her how much of an effect did the "school" of psychology they were trained under, or that of which her colleagues followed had on a determination.

She said it had a profound effect on them.

My answer to that?

"I already knew that, I just wanted to see you say it"

The hardest part of a self assessment is for one to remain on point with objective views of their own person, something I feel many are not capable of, who will have to trust that their psych pros hit the mark when they did their homework on a client.

 

[Fridgemagnetman]

something I feel many are not capable of, who will have to trust that their psych pros hit the mark when they did their homework on a client

Whose answer may depend on which school they went too,as you mentioned.

There are often ''trends' within these things leading to diagnoses. Professionals themselves can be subject to biases,cognitive or otherwise.

Does it work for you to think of yourself in this way ?

A reasonable question.

If state help is needed,that's another ball game.

 

[Tom]

A situation that occurred on this forum was the night I cornered a neuro-psych that specialized in autism and asked her how much of an effect did the "school" of psychology they were trained under, or that of which her colleagues followed had on a determination.

She said it had a profound effect on them.

My answer to that?

"I already knew that, I just wanted to see you say it"

The hardest part of a self assessment is for one to remain on point with objective views of their own person, something I feel many are not capable of, who will have to trust that their psych pros hit the mark when they did their homework on a client.

I do think its important to keep one's mind open and if new information comes along reassess the situation. HFA can be difficult to pick out. Professionals can get it wrong, disagree or change their mind. So can we.

 

[HidinginPlainSight]

I haven't read all the replies closely, but I imagine some don't because of the cost involved of getting information that you already know.

I had the time and money and figured it was a good use of it. Looking back I question that notion, it was 1000s of $. Nothing really changed upon having it confirmed. I could have just left it at the referral and decided that it was probably correct.

The thing is, at the end of the whole production (and it is a production), I just said (paraphrasing on memory), "So you're saying that you have no cure" and she said, "Yeah, but you already knew that." Then went on to talk about support and all sorts of things I have no interest in.

 

[Nitro]

I do think its important to keep one's mind open and if new information comes along reassess the situation. HFA can be difficult to pick out. Professionals can get it wrong, disagree or change their mind. So can we.

Even after getting a nod on my own assessment, I still question it to this day.

I still fly my self-assessed flag, because it was me that brought it to the attention of the braniacs that were working on another issue.

 

[techteach]

Do you think people who self diagnose want the badge?
It often comes after decades of a torturous life,being lost,alone, a whole bunch of negative experiences.
The realisation can be a relief plus the start of a new journey.

I just want to thank you guys again for the help you have been to me with my asd. Thank you that you do not require a DX to participate in this forum, otherwise I would not have anybody to help me understand why I am like I am. Books are not the same as talking to others.

I live in the USA. My direct supervisor would fire me in a second if he guessed or found out. Students on the spectrum who have went through the program are mocked behind their back by this person. Even when they not DXed he makes fun of any odd behavior, what he considers unusual. I defend them, but I never "out" them. There are "laws", but in reality you are on your own.
I could lose my drivers license as well several other rights here (in the US) I can see that happening easily.

I will never be comfortable being diagnosed, too many possible consequences.

Guys, I do not post very often but I read this forum all the time. Thank you for letting me be a part.

Sorry, I am always on the outside of every group. For the first time in my life I have found people like me who understand and I can talk to. So not having a DX will put me on the outside again? (Sorry, I'm laughing and crying at the same time.)

Think of the irony. I need to go to the people who have always put me on the outside and get them to say I'm on the outside so that people who are on the outside will let me be a part of the outside. I am ALONE.

My wife loves me but she does not understand, she tries hard but she is not on the outside. She does understand, she accepts.

Thank you for accepting me.