Self-diagnosed Aspies

[eon]

Not only do I not believe in self diagnosis, but I refuse to believe in diagnosis at all.


The reason is that autistic spectrum individuality isn't something you can define that easily. The difference is in an individual's intuition. Their motives of thought differ greatly due to these intuitional traits.
The correct term is discovery. Aspie discovery is something that can be collaborated, ultimately it is ALWAYS a collaboration because how is one single individual to know anything of aspie thought without a reference point from peers or experts?

I used the perspective of the great Dr. Tony Attwood to begin my discovery process. He has written an awesome aspie discovery definition to help explain it or sum up the most prevalent traits in the broadest way possible.

Anyway, this is my recurring advice that I feel compelled to put into any thread or discussion where (self) DX comes up or anyone starts saying asperger/autism is something you have or something with symptoms.....................................

 

[eon]

one more note.. when i went in to a supposed professional to see if a 2nd opinion would agree with my research, they were very incompetent. they totally screwed up when filing the insurance claims and still put adhd (a now invalid assessment of my personality), causing the claims to be rejected as an exclusion. now i have a $300 collection to settle

 

[Billi]

I have been to enough therapist and psychologist and psychiatrist in my life to realize that an awful lot of them are actually pretty clueless. I have not sought out a professional diagnosis because of the difficulty in doing so and the fact that it would not benefit me in any way, aside from reaffirming what I already know. I suspected I was autistic 31 years ago, when I was 12, but back then there was no diagnosis of HFA or aspergers. I had had enough psychological testing by that point in my life to realize that I was different, I had had special education classes, and speech therapy. I could see by that point in my life that I did not relate to my peers in the same way they related to one another. I had suffered frequent meltdown my whole childhood, and my noise sensitivity had even been a subject discussed by my teachers at parent conferences. I knew my parents treated me very differently than my siblings, in many ways I was indulged and protected. I knew I had done very well on my intelligence tests, so I wasn't dumb. I was in gifted classes but went to special education also. So this is not something I just came across and decided solved my problems. I have never told anyone offline. I cope very well, but there are still things in my life I want to change, to learn some better skills. I heard about AS on TV and I researched and thought on it for about 5 years before I applied the label to myself. I seem to get by real well, as long as no one looks too close. I do not have social anxiety, but I definitely am not very good at socializing. I'm like a bull in a china shop, I plow on through making a mess. I've spent a lot of my life having to study myself, I have dealt with depression, addiction, and have had to come to terms with my sexuality.
So many people want to make like getting a diagnosis is easy. If I were a child today it probably would be, but as a functional adult it is not easy, or cheap. Even if my insurance would pay for it, (it won't) I would first have to convince my primary physician to get a referral, then hope that he sent me to a doctor who has some training in adult AS diagnosis. (currently none in my city) . And if the first doctor does not give me a diagnosis, I would have to pay for each new doctor out of pocket. The whole idea of shopping for a diagnosis from specialist to specialist seems sort of wrong anyway. And when I get my diagnosis what have I gained? I still wouldn't qualify for any sort of assistance, and the type I would benefit (social skills and coping with sensory issues) from does not exist for adults anyway. Do I tell my family? My parents, now 70, who struggled to raise their "special" kid, who fought to keep me in regular classes where I would be challenged to learn. Could I use it as an excuse with my partner when I ignore him for days at a time while I am pursuing one of my interests? Would instead of just being helpful, would he now feel obliged to help me keep my self organized. Do you think my employer would be more understanding, and wouldn't use the next layoff as a chance to get rid of me. I'm not looking for anything, except a better understanding of myself. and hopefully through that understanding I can make some changes that help me cope with life a little better and maybe make me a little better at being a human being. Even if I am wrong, at least I am working to address the issues that make me believe that I am an Aspie. I don't need or want anyone to "approve" or sign off on that.

 

[eon]

how do you edit posts. I can't see a button to go into edit for my posts here.

here's the link to what i consider to be the ONLY valid way to look at aspie/spectrum individuality when attempting to define one individual.

Tony Attwood - Author of The Complete Guide to Asperger's Syndrome - The Discovery of

 

[King_Oni]

I've had a decent share of therapists. Ever since I was a kid I had treatments here and there, all to no avail. And last week a therapist hinted that it might be autism. A few months before, when I was having a screening from a psychologist cause of unemployment, he pretty much told me the same.

However, it has been since quite recently... about a year ago, that it occured to me that autism might have something to do with me... well, being me. I never really put that label on myself because... I don't really think putting a self-diagnosis for sure is going to help. I mean, I can live with myself, it's my surroundings, that's my problem, and they wont take it serious if I tell them with the sidenote that I suspect I have. It'll be written of as "that's an excuse".

I think, that self-diagnosis could come before seeking professional help and getting it official. It's kinda like my therapist put it; if you're keep living like this, and especially in employment, people will at some point write you off as impossible to get employed, rather than offer support to land a decent job because of your "disorder".

I'm quite skeptical about the entire "should I get it official". I don't know what's beyond that point. But it would functioning a bit more towards "what society wants" and not staying a social outcast a bit easier. But like I said, it's not really for me personally, it's more for the bigger picture towards the future.

 

[epath13]

I think, that self-diagnosis could come before seeking professional help and getting it official. It's kinda like my therapist put it; if you're keep living like this, and especially in employment, people will at some point write you off as impossible to get employed, rather than offer support to land a decent job because of your "disorder".

I'm quite skeptical about the entire "should I get it official". I don't know what's beyond that point. But it would functioning a bit more towards "what society wants" and not staying a social outcast a bit easier. But like I said, it's not really for me personally, it's more for the bigger picture towards the future.

I do agree the diagnosis is more "for the bigger picture". It's always been hard for me to explain why I think and behave in a certain way, now I just say, " I have Asperger's" and people go, "oh, I see" or "oh, now I get it" for some reason some want to give me a hug because of that, which I don't really get but ok plus I get support as a person on a spectrum. When I mention that I have Asperger's many people somehow become more clear with their expressions, intentions, sometimes they repeat certain things a few times to make sure that I pay attention. Which is very important for me, and I really appreciate people doing that. My older son went to a new school this year and nobody knows about the Asperger's there, so they talk to me like they would to a regular person. And I'm way more confused... Yeah, that sucks...anyway, I try my best we'll see what I'm going to do next about it... So yeah, it's easier when you have an official diagnosis, at least I can see benefits of it in my life.

 

[AshleyT]

Well, I'd always knew about my social issues, problems with very acute hearing, etc. My mom had always knew something was a little off about me, but it wasn't until 6th grade that we thought I had Autism. Asperger's fits me: social problems, acute senses, above average IQ (160). I'm not officially "diagnosed" because my parents think it's pointless: I'm too high-functioning to get drugs or whatever, it'll just be a burden on my education. So, I'm forever "self-diagnosed".

You can't really get meds for Aspergers :S...Sleeping tablets maybe.

I'd definitely go for the diagnosis though, i also thought it as pointless getting diagnosed with ADD...Mum tried convincing me too but i ignored her and said it wouldnt change who i am.

I then got diagnosed in April for ADD, and i can't believe how much happier i am! Just knowing 100% what i'm doing is because i have ADD and that other people do the same thing... knowing that some of my difficulties arn't be being stupid, but because i have a condition...

I'd 100% recomnmend getting diagnosed.

 

[blondenerd]

Adding my couple of cents here...I'm self-diagnosed as well. My mother is a textbook case of AS (and not a mild case!), but she would never ever accept it let alone get diagnosed. She enjoys her own little world. I hesitate getting diagnosed because I fear that an official diagnosis would prevent me from doing certain things I want to do. For example, I find it hard to form relationships with men (well, with women, too), but I don't want to stay alone for the rest of my life, so I'd like to adopt a child at some point. If I have an AS diagnosis, I'm pretty sure it would prevent me from doing that, even though I know I could do it. If my mom could, then I can, too! So for me it's about the possible narrowing of my possibilities in life. Of course, I don't exactly know how much it would affect my choices and possibilities, but this is just what I feel (and fear).

 

[King_Oni]

Adding my couple of cents here...I'm self-diagnosed as well. My mother is a textbook case of AS (and not a mild case!), but she would never ever accept it let alone get diagnosed. She enjoys her own little world. I hesitate getting diagnosed because I fear that an official diagnosis would prevent me from doing certain things I want to do. For example, I find it hard to form relationships with men (well, with women, too), but I don't want to stay alone for the rest of my life, so I'd like to adopt a child at some point. If I have an AS diagnosis, I'm pretty sure it would prevent me from doing that, even though I know I could do it. If my mom could, then I can, too! So for me it's about the possible narrowing of my possibilities in life. Of course, I don't exactly know how much it would affect my choices and possibilities, but this is just what I feel (and fear).

Well, if it's only disadvantages you get from it, and are "happy" as is at the moment, I don't think you should urge to get a diagnosis done I guess. It's different deal if you have a problem functioning in society on the level that is considered "normal". Surely, being alone and all, and not being able to get into relationships that well, is a pain... but how about employment for example? I for one, have experience first hand, that telling myself that I can do it (function like " normal") is something I can only sustain for so long and at some point I'd drop the ball and drop the metaphorical mask. Though some people on the spectrum can wear that mask relatively easy.

 

[breadfin]

Hi,
Am new to forum and just going through some of the posts.

I am in the process of self-diagnosis. One of my son's was diagnosed two years ago, PDD-NOS, and I suspect that my oldest has it as well. I have no doubts that my father has Asperger’s- and that many in his family have it as well. I think I have it- it certainly makes a lot of sense- though I must add that I have been able to cope with some of the more difficult traits of Asperger’s (to some extent).

I realize the importance of being diagnosed- and if I had the money (and courage)- I would run for it. As others have noted on the thread, there are lots of syndromes/delays that could make it look like PDD/autism/asperger's- especially if all are bunched into one. But if you really researched it yourself, read others’ experiences (i.e., Temple Grandin), couldn't you figure it out for yourself?

My childhood was fraught with social difficulties- always alone. And when I tried to make friends I was ridiculed or just ignored. I just really had no clue how- and in time, no desire to even make friends. I was constantly picked on, even in college. I even had teachers tell me I’m stupid- or giving up on me. It wasn’t until I started University, where I could hide from people that I was actually happy- it also helped that I was studying what I was most passionate about. As for keeping jobs- very difficult- been told too often that I need to socialize more, need to make my mark, and that I can’t forever sit at my desk and write. Been told to keep my head up- stop staring at the floor- and look at people in the face.
I’ve had a lot of self-esteem issues- and though my grades in school were always very good- I always thought I was stupid. I could never get jokes, am too literal and have no clue how to start a conversation, engage in one or even end it. I’ve worked on the turn-taking of talk, and the chit-chat that people seem to enjoy, but this is still very difficult. I’ve worked on eye contact- and am doing quite well- but it still doesn’t feel natural. I have a lot of weird behaviours that I think I’ve toned down- at least when I’m away from home.
Anyways, my point is, if my life- especially my childhood- is explained by Asperger’s, or if I read a book and see similarities between other people’s experiences and mine- why is it such a bad thing to self-diagnose. In fact, once I realized that I might have asperger’s, you wouldn’t believe the relief and the weight that fell from my shoulders- maybe I wasn’t stupid after all.

N

 

[jayraytee]

Most "professionals" know less about Asperger's (and autism spectrum disorders in general) than any self-diagnosed person who's read a good book or two about autism spectrum disorders.

Disagree. A person who has enough degrees to be able to diagnose Aspergers, has a far better chance to diagnose it accurately than a person who has read some internet articles or a book or two. There is a lot of overlap with other disorders and the doctors do take a long time to formulate their diagnosis because they have criteria for ruling certain disorders out. Its complicated and takes a professional some time to go through the process.

Its like saying "Most "astro-physicists" know less about the cosmos (and physics in general) than any person who's read a good book or two about the solar system and owns a telescope."

The person that diagnosed me had doctorates in this field, the converse with colegues and meet with people on the spectrum every day, they do know more than I would even if I read a book mor two.

 

[HelloDizzy]

I knew a lot about Aspergers (due to my close friends suspicions that he has it and my tendency to look up anything psychologically related) before the thought even entered my mind that I may have it.
I knew all about it before I recognized the symptoms in myself.

So, I spoke to several psychiatrists and psychologists about it, and indeed, was diagnosed.

I prefer things to be "official" instead of "oh I read wikipedia and decided I have this."

 

[eon]

none of that changes the fact that a vast number of so called professionals aren't qualified or knowledgable about spectrum personality, thus the reader of Dr Attwood's complete guide is well more qualified than I would say a vast majority of "clinicians"

 

[breadfin]

I find it interesting as well, after reading Tony Attwood's book and then the related Asperger/Girl books being published recently that so much is being reconsidered (even my son's psychologists and other professionals in the field are stating that the criteria and labels of autism/asperger are being reconsidered). They no longer think the numbers are 1/4, boy/girl but now according to Attwood is more like 1/2, boy/girl (just want to note this in not a direct quote but my own reading of his and other works- as well as what has been said on interviews with Attwood). They are even considering setting-out - or rewritting -the criteria because it doesn't fully fit with what they have seen with girls/women. So this in itself questions what criteria is out there- even the DSM-IV is being questioned and many psychologists/professionals are actually using the gillberg 1991 for a beginning diagnosis.

So if the professionals are reconsidering, and the criteria are being reworked, and the labels are even changing in the near-future, why couldn't we self-diagnose. I myself never refer to myself openly as an aspie because I have never been diagnosed (and I probably never would even if I were), but I do believe I have asperger's (and my son's psychologist has agreed it highly possible) because I have read extensively about AS, because I have one child who is diagnosed on the spectrum, and a second who is most probably on the spectrum, I have a father who is a perfect example of an AS, and I've even worked with several children on the spectrum (daycare). So if I self-diagnose, having no recourse to being professionally diagnosed, why should I not self-diagnose, for my own ease of mind- and to allow me to work/cope with my difficulties/problems. In fact, much of what I've learned through my son's professionals has actually helped me better myself. And knowing that you may have asperger also helps deal with some of the "symptoms" that would otherwise drive you crazy because you don't know why you do these things and you don't know how to cope with them.

I think it's great that many of you have been able to get a diagnosis- and some of you during childhood- and I'm hoping that that diagnosis has lead to getting help- since that is really why we get a diagnosis. That's why I got my son a diagnosis, so he could get help from the start- so he wouldn't be left to wonder why he was different, so he wouldn't wonder why people thought he was stupid because he didn't get jokes or took things literally, so he could be happy with who he was and instead of struggling with his difficulties will get the help he needs to cope with all the symptoms. I wish everyone could get this type of help- hell, I wish I could have gotten this type of help.

So to you people who have self-diagnosed. If you have done so because it gives you relief/release and because you are now able to cope, or are learning how to cope, with your difficulties- then go for it!

N

 

[kg4fxg]

I am not sure I agree with those that would say I don't believe in Self-Diagnosis? It is a very precarious situation to be in. Let me explain...

I doubt that I would have gotten the "AS" or Autism diagnosis in 1968. I have seen a multitude of doctors and and they would say I am OCD or Bi-Polar? My wife pursued her advanced degree in Autism and taught just "AS" kids.

For me I score on the "AS" test a 46. OK, you can't go 100% by just a test. But then again, many of my quirks my wife says are "AS". The more I read the more I understand, but in reality I like me and I don't see a problem with me.

Look, I need to learn and do something or my career will be over. If I am not "AS" then what would be an identical alternative?

Bill

 

[Kelly]

I've always known I was different, my parents did as well but they always drummed it into me that it was okay to be different. So as I grew up I just thought I was a little weird and to be honest I thought everybody thought / felt / did things the way I do to an extent. My parents refused to accept anything was wrong with me, when I wouldn't speak at school (due to taking the phrase "You're here to learn not to talk" literally) my mother secretly recorded me doing my impressions of famous people(one of my obsessions as a kid) and took it in to the headteacher to proove I could speak. When one teacher suggested to my mother that she should take me to a psychiatrist because something clearly wasn't right with me my mother again lived in denial and ignored the teacher's advice. I didn't really have any friends, not that I hung out with outside of school and in school we were the bottom of the pecking order so it was a case of we hang out together here or spend our school life alone.

It was approximately 4 years ago that I first wondered if I might have Asperger's, I read about it in a news article and it sounded so much like me. I read more about it and was sure that's what was wrong with me, at the time I had a friend (term used loosely as she was just using me) who's boyfriend's little brother was autistic and she said there was no way I could possibly have Asperger's, she didn't offer any reason and that made me doubt it and put it to the back of my mind. Then a few months ago I started thinking more and more about it, I saw a few documentries about it and again it all fitted, I obsessively researched it, did online tests all of which were saying I had Asperger's. I started talking to my mother about it and she told me so many things that I didn't even remember and really shocked me and also angered me because it was a case of how could she have even begun to think I was okay and didn't need help(but I'm an 80's/90's child and it wasn't as well known then so I got over being angry at her).

So I became self diagnosed and I started to notice things with my daughter, she's always done strange things as a toddler but the older she gets the more extreme her reactions are getting. Also things like sensory issues I always thought it was just something I had, so when she started complaining that certain fabrics felt wrong and made her feel ill, when she was screaming and covering her ears because of the hand dryers in public bathrooms I just assumed she'd inherited my weirdness, wheras from my self diagnosis I realise what she's inherited is Asperger's. She's also starting to have problems in school, she excels at reading and writing but her maths is well below average, she can't understand numbers but give her an equation visually and she can do it.

So my daughter's increasing problems are pushing me for an official diagnosis for myself, I don't want to put her through the diagnosis process yet as she has some health problems that I want to concentrate on first and I thought if I got a diagnosis it may in turn help get her one as it's an inherited condition. For myself I just want to know...well I already know but there's always that slight doubt that maybe I'm wrong so I want it to be official. Wheras for my daughter it would be to get her the help she needs if she needs it. At the moment her teacher is being very accomadating with her maths and allowing her to use visual means to help but I'm sure as she gets older (she's 6) the school will be less willing to let her do things differently to the other children without a diagnosis. It would also help her with arising situations, such as the medical treatment she's undergoing, if I could just tell them she has Asperger's and if they did things certain ways as well as taking it slow it would stop her from becoming so hysterical and lashing out.

So far I've been to my GP who was honest enough to say he had no idea what Asperger's was(luckily for him I'd printed out some info) he then referred me to the mental health team, the gateway worker I saw read 1 paragraph of my 3 pages long brief history that I'd typed out and told me I had obsessive compulsive disorder(just because that first paragraph mentioned as a child I was obsessed with touching things 4 times or I felt wrong) and she would have to speak to her manager to find out which therapist I needed to see as it had been going on for so long. She also said that any problems my daughter has are all down to me and her learning them from me. It took me a day to process all the things she'd said to me before I got angry / cried etc, then I phoned the national autistic society and after speaking to the advisor for about an hour she said she wasn't capable of diagnosis but just from the things I'd told her she was confident enough to say that both me and my daughter have Asperger's. She sent me lots of information including two diagnostic places and off I went back to the GP to tell him what had happened. The GP was furious called the gateway worker up and basically told her she wasn't qualified to diagnose anything and then he said that I'd have to go via the mental health team, keep going until they hit a wall and can't get any further...basically when they can't figure out or diagnose anything else then I'd be sent to the autism specialists. So I waited and waited and then I found out that the gateway worker had referred me for cognitive behavioural therapy (it was opt in as well so if I didn't respond within 3 weeks they'd strike me off their records) no mention of diagnosis or therapists or anything. Another call to the national autistic society who basically told me to take the info on the diagnosis centres to the GP and he has to refer me, he has no reason not to as both places take GP referrals.

So that's where I'm at now, I should have called last week but I've been so focused on my daughter's health and taking her back and forth to the hospital that I haven't had time. It doesn't help that my doctor's surgery has a stupid appointment system in which you have to call up on the day to get an appointment you can't make one in advance. If I'm fortunate enough to actually get through to the receptionists (after calling about 50 times) guaranteed they will have either no appointments left or one in 5 minutes that I can't possibly make because I live a 10 minute drive away(which is 20 minutes in rush hour).

 

[kg4fxg]

AZ83

Thanks for sharing. I am trying to pursue getting a diagnosis but I would think that might be difficult as an adult. I have tried some of the on-line tests. I don't have to worry about Bi-Polar as I score much too low. ADHD I also score very low. In my studies I ask myself if not Aspergers what else is similar? I do score high on OCD but it is hard to distinguish it from Aspergers. I realize that the online tests are not an official diagnosis. So I scored a 46 on the Asperger one. But if I take each question I could write pages about these questions.

 

[King_Oni]

AZ83

Thanks for sharing. I am trying to pursue getting a diagnosis but I would think that might be difficult as an adult. I have tried some of the on-line tests. I don't have to worry about Bi-Polar as I score much too low. ADHD I also score very low. In my studies I ask myself if not Aspergers what else is similar? I do score high on OCD but it is hard to distinguish it from Aspergers. I realize that the online tests are not an official diagnosis. So I scored a 46 on the Asperger one. But if I take each question I could write pages about these questions.

That's why even a therapist will tell you "respond as fast as you can" instead of trying to think about it long. It's a matter of direct asociation.

Did you do a aspergers specific test? Or did you do a autism test?

 

[NeverEnder]

AZ83

Thanks for sharing. I am trying to pursue getting a diagnosis but I would think that might be difficult as an adult. I have tried some of the on-line tests. I don't have to worry about Bi-Polar as I score much too low. ADHD I also score very low. In my studies I ask myself if not Aspergers what else is similar? I do score high on OCD but it is hard to distinguish it from Aspergers. I realize that the online tests are not an official diagnosis. So I scored a 46 on the Asperger one. But if I take each question I could write pages about these questions.

As to the probabilities of being diagnosed with Aspergers as an adult: I am almost 41 and was diagnosed 2-years ago with Aspergers at the age of 39 by a Psychiatrist.

 

[Kelly]

Thanks for sharing. I am trying to pursue getting a diagnosis but I would think that might be difficult as an adult.

From what I've read about getting an adult diagnosis the difficulties that arise tend to be around ways in which you've learnt to cope as an adult. For example myself, I can force myself to make eye contact but only after several years of making eye contact with my husband, for the first 6 months of us being in a relationship I couldn't look him in the eyes for more then a few seconds. Unfortunately you get some professionals who will be looking for very specific traits and to some of them if you can make eye contact you are not on the spectrum. Then there is also the outright ignorance that exists, the gateway worker I saw also informed me that I couldn't have Asperger's because I'm an adult and that it was a childhood developmental disorder.

AZ83
In my studies I ask myself if not Aspergers what else is similar?

I keep asking myself the same question if it's not Asperger's then what is it? Nothing else fits quite like Asperger's for me, from the social awkwardness and sensory issues through to the obsessions and stimming.

AZ83
I realize that the online tests are not an official diagnosis. So I scored a 46 on the Asperger one. But if I take each question I could write pages about these questions.

The thing that gets me about all of the questions is that they are so subjective, alot of them are too general to give a true answer, like on the BAPQ question no.20 'When I make conversation with casual acquaintances it is just to be polite'
How do you answer that when you don't actually make conversation with people? So I had to imagine what I would do if put into that situation, if I HAD to make conversation then yes it would just be politeness but if I could get away with it I wouldn't speak at all.

Or on the AQ test question no.7 'Other people frequently tell me that what I've said is impolite, even though I think it is polite'
I don't really interact with people so this doesn't come up and I don't think most people are rude enough to openly say your impolite to your face, they'd probably just glare at you, think you were an idiot and avoid you in future. I imagine they would only say something if what you were saying was horrendously inappropriate or offensive and even then it would be a vague comment asking you to be quiet or they would just change the subject. So again how do you answer something that you don't have experience with?

Or number 13 'I would rather go to a library than to a party.'
My true answer is neither, if I want a book I order it online (or download it to my kindle), I hate parties, libraries I don't like going to because there are too many people, the books are always gross (sticky, dirty, scruffy) and it really really annoys me when the books are splayed about, how there never seems to be any order, why can they not put the books into alphabetical order. I once took my daughter to the local library, the kids section made me feel edgy, books all over the floor, some sticking halfway off the shelves, upside down, in the wrong place etc. So library and parties are no go areas for me so again how to answer truthfully? If I was forced to pick between the two then it would be the library but my true answer to the question is neither so the results will always be slightly skewed.