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

[sybok]

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.

 

[SusanLR]

I know what my psychologist told me about the reason formal diagnosis is so expensive was the cost to the practioner of the test "units", she called them.
This cost is then passed onto the client along with the time of the practioner = big bucks. Yet another reason most do not accept insurance for the tests either.
Most do not consider it a necessity to do a formal testing unless it is needed for a legal reason such as disability or special needs help.
When looking for self help or reasons why you are as you are because you and your life interactions have been different, the self tests and an in depth interview with a psychologist or LCSW are enough to give you answers and get started in ways to change what you want to change.

The only problem I find in talking with others openly is the pre-formed ideas of what autism is and it is usually not accepted by the world openly. Just as many other things in life that make some of us different.

Also the term Asperger's is no longer a preferred term by psychiatry. It was removed from the DSM and now we are all just on the spectrum. Leaving people to form their opinions of exactly where. Most of us that were diagnosed Aspergers will keep calling it that.

 

[Judge]

Some simply feel compelled to seek a formal diagnosis for their own edification and peace of mind. Others seek some form of government entitlements and/or protections in which a formal diagnosis is required.

And for some of us, it doesn't really matter for one reason or another. With so much interaction with others on the spectrum over the years, I don't feel compelled to seek a diagnosis any more than one would seek a medical professional to confirm their own sexuality.

I suppose part of this decision also lies with the reality that the international medical community is not quite on the same page when it comes to autism. Giving me a certain degree of skepticism over their professional prowess. Maybe some day this will change, probably when I am long gone from this world.

 

[Crossbreed]

Besides confirmation, the only other issue that I can see is if one tends to be destructive or self-destructive. Those two need professional intervention. If neither is present, sure, try it on and see if it fits and its strategies help.

My earlier diagnosis was ADHD, but that didn't fit for so many reasons.

 

[Suzanne]

I am not officially diagnosed, but if I have the opportunity, I will take it, because I sense that it would be better for me, despite the fact that it is clear I have it and also, it is clear that I have social anxiety to the extreme and yet, do not need a formal diagnosis; meaning that NO ONE questions whether I have it officalised, so it is bizarre in the NT world. Basically, if they SEE "symptoms" then they do not question and if they KNOW roughly by how a person is, then they see no need to ask further questions.

Aspergers is a very difficult "handicap" to have, because very few of us have montone voices or a bland face, which is what caused me to believe I could not have it, but being deliberately in contact with official aspies is most theraputic for me.

When I first discovered aspergers, like yourself, I imagined I must be a the very bottom level of it, but as I got to know more and more about it and being on here, I see that my history shows I have learned to adapt to the NT world ( albeit, most clumsily).

One of the first things I noticed on joining aspie central ( oh dear, I felt such a fraud - as though I was going to be "caught out" in my deception), is that no one types in text form and for me, that was a powerful discovery, despite how "insignificant" it is!

If I was a therapist, I would immediately diagnose you as being an aspie, based on just what you say here; it is soooo ASPIE how you put yourself across lol

For the first time since finding out about aspergers; not so long ago, I was introduced by a woman of my age to her niece, who has aspergers, as: this is Suzanne, who also has aspergers! I could have hugged her for that She knows I am not official and yet, obviously by getting to know me, puts two and two tegether and does not come out with five

If we were in the world dominated by aspies, there would be no need to try and seek "disclosure", but alas we are in the world that is dominated by NTs and thus, it is more beneficial to have a "deploma of aspergers". Anyway, that is how NTs make me feel, as if I need to show them a certificate .

Just to add that when you discover that indeed, there is no question of being an aspie, suddenly it is like giving yourself permission. I find that I stim a lot more. I give myself permission to not join in with social interactions. I don't feel quite so crushed when I am told to hush up. Still find it embarrassing if I can sense I am going on and on though.

Oh and my obsession is colour. And within that obsession of colours, varients of small obsessions; like being obsessed with one colour, to the extent that I can smell it and feel it and if I do not have an item of clothing in that colour, I feel sick. So, when I want to get to know someone, I always want to know what their favourite colour is and if one was to ask me what mine is, if I am going through one of those "mini obsessions" that will be my "favourite" colour, otherwise, no favourites, because each has their unique position.

And now that the "book" as come to an end, welcome aboard

 

[xudo]

While I would love to know definitively, I'm not sure there is value.

For me personally, I think that formal diagnosis is the best option. I fully realise that for some people, such as yourself, it doesn't necessarily make sense to seek formal diagnosis - either because finding out so late in life means you have 'managed' to this point, or you're now retired so have no need or multiple other reasons.

There's no way to really answer the statement I've quoted. Either the need to know outweighs the value of finding out, or vice versa.

In my country (UK) we have free healthcare, so obviously I am in a privileged position in terms of an assessment. Although the systems in place vary wildly from place to place, you can get a formal diagnosis for free. I was diagnosed at 30, and it made sense for me to go for this as then I am able to access help and information which would be closed to me without it.

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.

While I'm sure you will get replies about your scores possibly showing a lean towards ASD, nobody here (and no online test) can actually diagnose you. Although you say you're not sure about the value of being formally diagnosed, it seems to me that by virtue of the fact that you have taken all of these test and are now looking for some kind of validation or to have your self diagnosis backed up by others, that the need to know once and for all maybe stronger than you think.

 

[sybok]

I am not officially diagnosed, but if I have the opportunity, I will take it, because I sense that it would be better for me, despite the fact that it is clear I have it and also, it is clear that I have social anxiety to the extreme and yet, do not need a formal diagnosis; meaning that NO ONE questions whether I have it officalised, so it is bizarre in the NT world. Basically, if they SEE "symptoms" then they do not question and if they KNOW roughly by how a person is, then they see no need to ask further questions.

Aspergers is a very difficult "handicap" to have, because very few of us have montone voices or a bland face, which is what caused me to believe I could not have it, but being deliberately in contact with official aspies is most theraputic for me.

When I first discovered aspergers, like yourself, I imagined I must be a the very bottom level of it, but as I got to know more and more about it and being on here, I see that my history shows I have learned to adapt to the NT world ( albeit, most clumsily).

One of the first things I noticed on joining aspie central ( oh dear, I felt such a fraud - as though I was going to be "caught out" in my deception), is that no one types in text form and for me, that was a powerful discovery, despite how "insignificant" it is!

If I was a therapist, I would immediately diagnose you as being an aspie, based on just what you say here; it is soooo ASPIE how you put yourself across lol

For the first time since finding out about aspergers; not so long ago, I was introduced by a woman of my age to her niece, who has aspergers, as: this is Suzanne, who also has aspergers! I could have hugged her for that She knows I am not official and yet, obviously by getting to know me, puts two and two tegether and does not come out with five

If we were in the world dominated by aspies, there would be no need to try and seek "disclosure", but alas we are in the world that is dominated by NTs and thus, it is more beneficial to have a "deploma of aspergers". Anyway, that is how NTs make me feel, as if I need to show them a certificate .

Just to add that when you discover that indeed, there is no question of being an aspie, suddenly it is like giving yourself permission. I find that I stim a lot more. I give myself permission to not join in with social interactions. I don't feel quite so crushed when I am told to hush up. Still find it embarrassing if I can sense I am going on and on though.

Oh and my obsession is colour. And within that obsession of colours, varients of small obsessions; like being obsessed with one colour, to the extent that I can smell it and feel it and if I do not have an item of clothing in that colour, I feel sick. So, when I want to get to know someone, I always want to know what their favourite colour is and if one was to ask me what mine is, if I am going through one of those "mini obsessions" that will be my "favourite" colour, otherwise, no favourites, because each has their unique position.

And now that the "book" as come to an end, welcome aboard

Thanks for your response Suzanne. I love what you wrote and the clear spirit behind it. Very nice. It feels a little sad to say, but your comment "If I was a therapist, I would immediately diagnose you as being an aspie, based on just what you say here; it is soooo ASPIE how you put yourself across lol" caused a strange emotional reaction in me, like a sense of validation that is rarely forthcoming in this life, other than through other people's lives in TV and movies. So thank you for that.

My favourite colour is dark green and favourite number is three. Ever since I was kid and we used coloured rods as numbers, the one three cubes long was green. So three is always green.

Steve

 

[sybok]

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.

 

[Crossbreed]

Just as if I could afford to pay for my divorce, I would do that immediately too.

I don't know under what circumstances you are seeking a divorce, but if you pursue an ASD diagnosis first, that diagnosis could have a positive impact on your marriage where you wouldn't feel the need to divorce.

Are you eligible for Medical Assistance?

 

[Alaska]

I do not know if it will cost less for you to go get a divorce somewhere they are easier and cheaper to get them. In the USA many Americans go to another state or to Mexico to get a cheap easy divorce.

It does not seem as if your Official Diagnosis will be as easy to come by. Perhaps you can just make do with online test results until you get your divorce, then work on that problem.

 

[sybok]

I don't know under what circumstances you are seeking a divorce, but if you pursue an ASD diagnosis first, that diagnosis could have a positive impact on your marriage where you wouldn't feel the need to divorce.

Are you eligible for Medical Assistance?

The divorce must proceed. The problems are way beyond an ASD diagnosis. I appreciate what you are suggesting but no, my ex has burned bridges and I have zero desire to repair them.

 

[Suzanne]

Thanks for your response Suzanne. I love what you wrote and the clear spirit behind it. Very nice. It feels a little sad to say, but your comment "If I was a therapist, I would immediately diagnose you as being an aspie, based on just what you say here; it is soooo ASPIE how you put yourself across lol" caused a strange emotional reaction in me, like a sense of validation that is rarely forthcoming in this life, other than through other people's lives in TV and movies. So thank you for that.

My favourite colour is dark green and favourite number is three. Ever since I was kid and we used coloured rods as numbers, the one three cubes long was green. So three is always green.

Steve

And you just happen to put a huge grin on my face lol

It warms my heart and thank you for sharing your colour with me. I see a land of dark green in front of me and suddenly it is surrounded by a number 3

 

[sybok]

Puddles just sang it for me.

 

[Gracey]

Hello Paxomatic and welcome
I personally don't have a formal diagnosis. I'm in the U.K and whilst there's free healthcare, it's been mentioned earlier in the thread it depends on the budget for the local health authority to determine what's available. It being cheaper to hand out pills for anxiety rather than investigate the root cause if the individual is functioning in some way.
I do know that a private assessment would cost around £1800 in U.K.

I'm not sure what a formal diagnosis would offer me in my own circumstances, only to have a professional confirm what I already suspect. My search for tips and techniques and methods to cope with or prevent some behaviours wont change but now I have a better understanding of what I'm dealing with (recently suspecting Aspergers) it feels like I can negotiate my way forward much better. Tailor self help to suit.

So, for me, to date self diagnosis is sufficient. I'm 47 and have blundered my way through life thus far. An understanding of why I feel and act the way I do and what I can do to help myself during the trickier times being far more important for me than the diagnosis.

 

[Sashi]

Self-diagnosis is sufficient for me. That's all that really matters.

How did I learn I was on the Spectrum? A 12 year old girl who hasn’t yet been able to utter a single word. I first suspected I was on the spectrum by observing the behavior of this student who did specific things that mirrored so much my own peculiar behavior that a light bulb went off in my head. It truly hit me like a ton of bricks!

So much so that I began doing on-line research and take the AQ test, RAADS-R, RDOS, etc. It wasn’t these tests alone that convinced me. They just encouraged me to continue with the research. The on-line test results had the same results of my being highly likely autistic. During this time, I had my regular visit to my family doctor and confided in him. We went over the pros and cons of a professional diagnosis and it was decided not to pursue it. The antedepressant medication I had recently been put on was helping me tremendously with anxiety issues. Since I was doing much better, I didn’t pursue it and he didn’t encourage it.

I receive constant affirmation from the children in the classroom who are on the Spectrum as well as my own behavior (meltdowns, social awkwardness, obsessions, routine, loner, stimming, etc.). Much of what I see them do in the classroom I do myself, whether in public or in private. I speak the same language with those on the Spectrum whom I have been corresponding with since joining Autism forums.

I would ask anyone doubting someone self-diagnosed to read my stories on My Life on the Spectrum. I started the blog site not long after I my self-diagnosis. Writing is my passion. The stories aren’t made up. They are about me and some are about the students I work with. I want to be an advocate for them.

I have lived those stories, and I still do. I have a choice about talking, writing, and praying about Asperger’s, but I don’t have a choice about living with it.

 

[142857]

I prefer "self identify" to "self diagnosis". I'm not a doctor, I can't diagnose myself. I can, however, see that my life experiences are very similar to a lot of aspies, and dissimilar to most NTs, so in the absence of diagnosis one way or the other I self-identify with the group I have most in common with.

 

[sybok]

I prefer "self identify" to "self diagnosis". I'm not a doctor, I can't diagnose myself. I can, however, see that my life experiences are very similar to a lot of aspies, and dissimilar to most NTs, so in the absence of diagnosis one way or the other I self-identify with the group I have most in common with.

That makes perfect sense to me. Thanks 142857.

 

[sybok]

Thank you sportster points taken, good information.

 

[Dusty285]

I self-diagnosed. I never had any idea what was "wrong" with my interactions with other people until I "discovered" the term "Aspie" in an article about how the world looked to her, written by a diagnosed Aspie. The recognition of a kindred soul led me to quickly find all I could about this part of Autism and to take the online tests. Twice, a few months apart. That was adequate for me. I am too old for a formal diagnosis to make any difference. I have the answers I was always looking for. I remember many many reactions and attitudes along the way in my life and in retrospect can see that a lot of people were aware of the Syndrome; were watching me as a live specimen. An unknowing specimen. All that is much more than adequate in my life as a diagnosis and validation.

I talked a woman of acquaintance into taking the online test to see what kind of score a very normal NT might get. Her score was 17. It blew me away briefly. I am well aware of most of the published scores in this forum and of my own test results. There is such a wide gulf between High Functioning Autistics and ordinary NT's.

 

[wight]

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.