Do people generally see self-diagnosis as an adult sufficient?

[psychgirl95]

Oh no. You are correct. If I could afford it, I would absolutely get tested formally. Just as if I could afford to pay for my divorce, I would do that immediately too. It's simply financially out of reach for me. And you are correct again, I am hoping, perhaps foolishly, to find validation without expense.

Where do you live? (I'm going to assume It's not the U.S. since you spelled color with an 'ou.' EDIT: I just saw that you said you're in Australia.) I think you may be surprised to find that there are some ASD specialists who will diagnose you mostly by interview (especially since you're an adult), making the assessment process no more expensive than a regular doctor's visit! Others offer payment plans, which might be an option for you as well. I self-diagnosed at the age of 13 or so and wasn't formally diagnosed until I was 20. Unfortunately, I, too, thought that all ASD assessments were expensive; if I had've realized that this isn't true, I might've been diagnosed earlier.

I paid $500 for an assessment with the ADOS, WAIS, and other tests included, and the psychologist said I couldn't have ASD because, according to her: it was diagnosed at ages 2-3 and since I wasn't diagnosed then (or the symptoms weren't noticed at that age), then I probably didn't have it; people with ASD aren't aware of their social issues (and I clearly was); and people with ASD don't have social anxiety. She also thought my insight into what I want to be (a psychiatrist and pediatrician that specializes in ASD so that I can properly diagnose individuals of all ages) was very unusual for my age (20 at the time), so I suspect she didn't think a person with ASD was capable of that much planning. (Except my future career is actually my special interest .)

In contrast, my local autism society referred me to a psychologist who specializes in teens and adults with Asperger's, and he diagnosed me 20-30 minutes into a 1 hour appointment. The cost? Nothing at all (because my insurance deductible was met). (If it hadn't been, it would've just been my regular copay, so about $30.) I personally think that this is the best route for diagnosis of ASD in those who are teenagers or older; this route allows you to get to know a psychologist (whom you can see as often as you like, if possible) and you can trust their diagnosis because they won't just be spending a couple hours with you.

 

[Nitro]

If you aren't looking for support,a formal diagnosis will only serve to give you peace of mind and nothing more.



The autism spectrum became a new special interest that added on to the armchair psychology that I have always been interested in. As I dug deeper into the methods used for a formal diagnosis,it became very apparent to me how bumbling and subjective the entire process is.

This went as far as picking a psychologist's brain in the chat room last winter and getting her to admit that an ASD diagnosis was influenced by the school of psychology they had been taught during their education,or the chosen method they adopted when they went into practice. Generally,a team of psychs often follow in the footsteps of those who joined the team before them.

Then I asked her how it felt to let me inside of her head instead of the other way around

 

[Keigan]

I'm self-diagnosed at age 53. It is a significant relief to finally understand.

I have no interest in a real diagnosis as in the US or has no meaning for an adult.

 

[Crossbreed]

I have no interest in a real diagnosis as in the US or has no meaning for an adult.

As long as you are not having any issues, like chronic unemployment or under-employment. If those are issues, your employment assistance counselor needs to have that information to best help you in getting and staying employed.

(Before I got my diagnosis, my employment counselors thought that I was just being deliberately obtuse...)

 

[Keigan]

As long as you are not having any issues, like chronic unemployment or under-employment. If those are issues, your employment assistance counselor needs to have that information to best help you in getting and staying employed.

(Before I got my diagnosis, my employment counselors thought that I was just being deliberately obtuse...)

Yes agreed - my situation is a bit different though you,have a good point, as an adult I would need to prove that my disability prevents me from getting and staying employed.

 

[sybok]

The general consensus seems to be not to tell people that you have Aspberger's or Autism. Caveat that with, unless you legally require accommodation or assistance. For which you will need a formal diagnosis.

People will not react well to this topic, they either don't care, have too many mis-perceptions, or just flat out won't believe you. Of the people I have told the responses I've gotten were:
"Stop attention seeking."
"you don't look like you have autism" (one of these was a trained psychotherapist)
"no you don't"
or variations there-of.

I'm like you, self-diagnosed later in life. By this time, I have so many coping mechanisms that learning this additional fact (being an aspie) was more about self-understanding and improving my ability to function in the world. It doesn't come up and I don't bring it up, especially at work, where it can't cause anything but problems.

While I am new to this self-identification as a person with Asperger's thing, I am far from new to diagnoses of mental health conditions. I stopped drinking for 24 years and attended AA, I have suffered it feels like continuously from anxiety attacks and general anxiety and lets not forget social anxiety, and of course depression and the odd total melt down panic attack. I have always talked openly about these things and cannot think of a situation where this has resulted in harm to myself or my career or my relationships.

Quite the opposite for me, I don't know that I would have survived, quite genuinely, had I not been so open.

I think I am finding this Asperger's thing so intriguing due to its clear explanatory capacity. A diagnosis or even a simple self-identification that I feel 100% confident in will bring into focus 50 years of alienation.

Already, as a person mostly convinced of his Aspergese, just made that up sorry, I feel empowered and more confident. I already feel less like apologising for my existence and more like embracing a fairly unique reality.

I love the explanatory power of evolutionary theory. Asperger's holds that attraction for me also, but on a much more personal level. I felt ashamed of myself most of my life. Asperger's takes that away. With Asperger's I no longer have to look down on myself because I hate football and popular music or because my take on a topic is left of field to everyone elses or any of the myriad other social reasons.

Asperger's would mean that I am not a failed normal person. It would mean that I am in fact a strong and creative survivor and the proverbial stranger in a strange land that we've been chatting about elsewhere. It means that rather than walk into a room full of people, or with even one person in it, and feel intimidated, that I am more akin to an anthropologist exploring new and exciting cultures.

Yes, that's it, Asperger's would turn my entire life experience on its head. God help any fool who would try to hold that against me.

 

[Fridgemagnetman]

While I am new to this self-identification as a person with Asperger's thing, I am far from new to diagnoses of mental health conditions. I stopped drinking for 24 years and attended AA, I have suffered it feels like continuously from anxiety attacks and general anxiety and lets not forget social anxiety, and of course depression and the odd total melt down panic attack. I have always talked openly about these things and cannot think of a situation where this has resulted in harm to myself or my career or my relationships.

Quite the opposite for me, I don't know that I would have survived, quite genuinely, had I not been so open.

I think I am finding this Asperger's thing so intriguing due to its clear explanatory capacity. A diagnosis or even a simple self-identification that I feel 100% confident in will bring into focus 50 years of alienation.

Already, as a person mostly convinced of his Aspergese, just made that up sorry, I feel empowered and more confident. I already feel less like apologising for my existence and more like embracing a fairly unique reality.

I love the explanatory power of evolutionary theory. Asperger's holds that attraction for me also, but on a much more personal level. I felt ashamed of myself most of my life. Asperger's takes that away. With Asperger's I no longer have to look down on myself because I hate football and popular music or because my take on a topic is left of field to everyone elses or any of the myriad other social reasons.

Asperger's would mean that I am not a failed normal person. It would mean that I am in fact a strong and creative survivor and the proverbial stranger in a strange land that we've been chatting about elsewhere. It means that rather than walk into a room full of people, or with even one person in it, and feel intimidated, that I am more akin to an anthropologist exploring new and exciting cultures.

Yes, that's it, Asperger's would turn my entire life experience on its head. God help any fool who would try to hold that against me.

Or..
Quite able to relax and explore the human zoo.

 

[MWS30]

I didn't believe I needed a formal diagnosis at first, but I'm pretty glad I have one (and from a well renowned Autism researcher in the area). It gave me peace of mind being able to tell myself "you aren't crazy, you're just autistic". I used to think I had fried my brain with drugs or was just plain crazy, but the diagnosis I received two or three years ago changed my life for the better. My family understands me better, some of my friends understand me better, and due to my sporadic and chaotic employment history here in the U.S. I was rewarded social security disability, which means I always have something to fall back on and I don't have to worry about becoming homeless anymore.

 

[Rasendra]

I like the self-identification perspective on things.
I do not have a formal diagnosis myself and hadn't really seen any need for it until watching a youtube video recently which led me to looking up a thread on a forum for further opinions. I don't personally feel a need for a diagnosis in addition to the fact of how easily misdiagnosis comes. I have seen many psychologists over the years, some not very competent in my opinion. One wrote me off as attention seeking almost the moment I walked through the door, which I couldn't understand when she barely had any time to speak with me. Another that I went to for couple therapy with my husband told him I was BPD. I had also been diagnosed as ADD in high school.

Thankfully though there have been competent psychologists that recognized my aspie traits and acknowledged that I most probably had that as well as ptsd. So while I have been misdiagnosed and no formal asperger or autism diagnosis I don't really feel a pressing need to make it official. I know I am on the spectrum and those that are close or important to me for the most part know and accept it.

So while I personally don't feel the need for a formal diagnosis, not to mention the cost, I worried that I would be seen as fake or something to admit to being an aspie or autistic. It seems from this thread though that that is not the case and it is fairly common not to be diagnosed.

 

[isthisreallife]

I've noticed a trend, most people who self diagnose, and seek an official diagnoses, turn out to be on the spectrum. We all seem to walk through life feeling like something is just odd. Like we are looking through a telescope that is just slightly out of focus. Just reading your post is enough evidence that you're on the spectrum. I'm in Canada, my diagnoses cost $3000+, and after all that, there aren't any services available for me so that I can sort through all of it. I'm an adult, and I've been functioning thus far in a NT society.
What NT's consider functioning is laughable.
Anyway, welcome to the forum! I hope you find yourself at home here with all these awesome people

Hi,

This is my first post. I hope I am on topic. I have self-diagnosed myself on the spectrum with Asperger's, albeit on the mild end of the spectrum, if that is acceptable terminology. Apart from reading around and just generally identifying with people on the spectrum I have also used some of the online tools. My results are below. Please note, the associated stats are from the site the tests were on and I understand others offer different figures, which I have no issue with.

AQ Test - 38/50 - 80% -90% of people with Asperger’s score 32 or higher on the test. In my view as I am currently 51 years old, have completed a Communications degree, have worked in an environment that has required that I directly train people for 20 years, and have read widely on self help topics my entire life, a score of 38 has to be an improved score compared to what I would have gotten 20, 30 or 40 years ago. To my mind, this is a persuasive, if not definitive, piece of evidence.

EQ Test - 18/80 - Scores of 30 or less indicate a lack of empathy common in people with Autism or Asperger’s Syndrome. Please note, I don't believe I actually lack empathy, just the opposite. I simply believe this is a dubious measure of my capacity to read the emotions of others.

RQ Test - 22 - I self assessed this one, so it is not accurate. It is meant to be parent or carer assessed. However, 87% of children with AS scored 15 or more.

SQ Test - 53 - According to the site three times as many people with Asperger Syndrome score in this range, compared to typical men, and almost no women score this high. Systemizing is the drive to analyse and explore a system, to extract underlying rules that govern the behaviour of a system; and the drive to construct systems.

Taken together, these tests strongly support a positive Asperger’s diagnosis. None of them would place me on the far end of the AS spectrum. They would, as far as I can tell, result in a relatively mild diagnosis, again if that term is even appropriate, “mild” I mean. Even if mild, an Aspie nonetheless. For me this is sufficient to classify myself as a person with autism, but specifically a person with Asperger’s syndrome.

For me it is very important to note that I completed a degree in communications, have worked in the human and technology support industry for 20 years, have attended AA for 24 years, and many counselling sessions. The significance being that I have actively sought to understand human communications of all kinds and have educated myself in the ways of the human for a quarter century. These tests conducted on me 25 or more years ago would without a doubt have resulted in me being further along the spectrum. This is based on the idea that a person with autism can learn and reduce the impact on their disorder in their lives. Much of what is recommended for people with Asperger’s, I have undertaken of my own accord without any idea that I might live life on this spectrum.

While I would love to know definitively, I'm not sure there is value. However, I would like to speak to family and friends and employers openly about this without having to forever add the caveat that I am not formally assessed. This seems to me would constantly undermine the claim and what I am seeking to communicate by making it. Namely, that while I strive to meet people where they are, and while I always seek to take responsibility for my actions, importantly I am not always aware of what I am doing that might be confusing or concerning people, and some aspects of myself I cannot change and do not particularly want to change.

What are peoples thoughts? Am I on track with self diagnosis or totally out of line? Why is it so difficult and expensive to even get a formal diagnosis. Note, I am in NSW Australia.

Thanks.

 

[Khendra]

I sincerely hope you can get an official diagnosis at some point. I'm in the US, so I can't assist with a place where you could get a cheaper formal diagnosis.

To answer your main question, I'd have to say no, simply because self-diagnosis in and of itself is prone to error. You may indeed have it, but too many other folks who "self-diagnose" don't necessarily have it. Example case: I interacted earlier with someone on here in chat who decided to correct me for missing a social cue. I later found out she is "self-diagnosed" and is unsure if she is truly Asperger because she doesn't have meltdowns. Though not necessarily every person with AS has meltdowns, I'm very suspicious that someone with true AS would read and correct someone else's social miscue so readily, AND have no tendency to meltdown. Hallmarks of AS include struggle with reading social cues, and meltdowns. A person who doesn't struggle with either, will have difficulty relating to most of us with clinically diagnosed AS who DO struggle with these classic AS issues.

 

[sybok]

Where do you live? (I'm going to assume It's not the U.S. since you spelled color with an 'ou.' EDIT: I just saw that you said you're in Australia.) I think you may be surprised to find that there are some ASD specialists who will diagnose you mostly by interview (especially since you're an adult), making the assessment process no more expensive than a regular doctor's visit! Others offer payment plans, which might be an option for you as well. I self-diagnosed at the age of 13 or so and wasn't formally diagnosed until I was 20. Unfortunately, I, too, thought that all ASD assessments were expensive; if I had've realized that this isn't true, I might've been diagnosed earlier.

I paid $500 for an assessment with the ADOS, WAIS, and other tests included, and the psychologist said I couldn't have ASD because, according to her: it was diagnosed at ages 2-3 and since I wasn't diagnosed then (or the symptoms weren't noticed at that age), then I probably didn't have it; people with ASD aren't aware of their social issues (and I clearly was); and people with ASD don't have social anxiety. She also thought my insight into what I want to be (a psychiatrist and pediatrician that specializes in ASD so that I can properly diagnose individuals of all ages) was very unusual for my age (20 at the time), so I suspect she didn't think a person with ASD was capable of that much planning. (Except my future career is actually my special interest .)

In contrast, my local autism society referred me to a psychologist who specializes in teens and adults with Asperger's, and he diagnosed me 20-30 minutes into a 1 hour appointment. The cost? Nothing at all (because my insurance deductible was met). (If it hadn't been, it would've just been my regular copay, so about $30.) I personally think that this is the best route for diagnosis of ASD in those who are teenagers or older; this route allows you to get to know a psychologist (whom you can see as often as you like, if possible) and you can trust their diagnosis because they won't just be spending a couple hours with you.

Speaking of 'special interests' does obsessing over one band count do you think? Like, almost to the exclusion of all others.

 

[Crossbreed]

Speaking of 'special interests' does obsessing over one band count do you think? Like, almost to the exclusion of all others.

Yes.

 

[sybok]

Cause no matter how hard I try to really enjoy other music, I have been stuck on Pink Floyd, Gilmour and Waters for about 40 years.

 

[Rasputin]

Hi,

This is my first post. I hope I am on topic. I have self-diagnosed myself on the spectrum with Asperger's, albeit on the mild end of the spectrum, if that is acceptable terminology. Apart from reading around and just generally identifying with people on the spectrum I have also used some of the online tools. My results are below. Please note, the associated stats are from the site the tests were on and I understand others offer different figures, which I have no issue with.

AQ Test - 38/50 - 80% -90% of people with Asperger’s score 32 or higher on the test. In my view as I am currently 51 years old, have completed a Communications degree, have worked in an environment that has required that I directly train people for 20 years, and have read widely on self help topics my entire life, a score of 38 has to be an improved score compared to what I would have gotten 20, 30 or 40 years ago. To my mind, this is a persuasive, if not definitive, piece of evidence.

EQ Test - 18/80 - Scores of 30 or less indicate a lack of empathy common in people with Autism or Asperger’s Syndrome. Please note, I don't believe I actually lack empathy, just the opposite. I simply believe this is a dubious measure of my capacity to read the emotions of others.

RQ Test - 22 - I self assessed this one, so it is not accurate. It is meant to be parent or carer assessed. However, 87% of children with AS scored 15 or more.

SQ Test - 53 - According to the site three times as many people with Asperger Syndrome score in this range, compared to typical men, and almost no women score this high. Systemizing is the drive to analyse and explore a system, to extract underlying rules that govern the behaviour of a system; and the drive to construct systems.

Taken together, these tests strongly support a positive Asperger’s diagnosis. None of them would place me on the far end of the AS spectrum. They would, as far as I can tell, result in a relatively mild diagnosis, again if that term is even appropriate, “mild” I mean. Even if mild, an Aspie nonetheless. For me this is sufficient to classify myself as a person with autism, but specifically a person with Asperger’s syndrome.

For me it is very important to note that I completed a degree in communications, have worked in the human and technology support industry for 20 years, have attended AA for 24 years, and many counselling sessions. The significance being that I have actively sought to understand human communications of all kinds and have educated myself in the ways of the human for a quarter century. These tests conducted on me 25 or more years ago would without a doubt have resulted in me being further along the spectrum. This is based on the idea that a person with autism can learn and reduce the impact on their disorder in their lives. Much of what is recommended for people with Asperger’s, I have undertaken of my own accord without any idea that I might live life on this spectrum.

While I would love to know definitively, I'm not sure there is value. However, I would like to speak to family and friends and employers openly about this without having to forever add the caveat that I am not formally assessed. This seems to me would constantly undermine the claim and what I am seeking to communicate by making it. Namely, that while I strive to meet people where they are, and while I always seek to take responsibility for my actions, importantly I am not always aware of what I am doing that might be confusing or concerning people, and some aspects of myself I cannot change and do not particularly want to change.

What are peoples thoughts? Am I on track with self diagnosis or totally out of line? Why is it so difficult and expensive to even get a formal diagnosis. Note, I am in NSW Australia.

Thanks.

I agree with Suzanne, that your Aspie qualities are coveyed through your writing. Also, you picked a cool Avatar.

 

[sybok]

There was a 'celebrity' in the media in the last couple of years who was being taken through the ringer for historical child abuse accusations. He said he had aspergers, but was never formally diagnosed. I have no idea why that was important for him to say. But even autism and asperger related organisations slammed him for it.

So, if push comes to shove, I do not really believe self-identity counts. Real diagnosis gives you a real voice.