So, I finally got tested...

[The Phantom]

Hi all,

It's been a really long time since I've made a thread, and I have to say I missed it. I liked venting and having you all give advice and share similar experiences, which always helped. As those who are familiar with me may know, I've been fighting for a couple years now to get testing done, even though my parents kept on putting it off. Well, after starting High School (which was the main reason I stopped posting so often sooo much work) and having my school counselors be involved (since they kept on getting notified about my bad grades), they talked to my parents and suggested I do got psycho-ed testing done. I though it was going to end up the same way as it did with my therapist, getting a referral only to have my parents flake out, but for whatever reason it finally went through. Testing was all right, it was pretty long though, and my Mom was almost appalled at the questionnaire she had to fill out, since some of the questions asked if I had ever committed any sort of crime, etc. ( slighty extreme things like that). My lady who tested me was really nice, and since she specialized in autism I thought I might finally get the answer to whether or not I had Aspergers (especially since she has a daughter and is a woman, I thought she'd understand the gender differences in Aspergers). Also, the questionnaires included a lot of social questions, I thought she might get a hint, LOL.

However, I just got the results back today. I am above average tin a lot of reading/writing related areas, but my organization in general is quite poor, and my suspicions were confirmed, I am naturally predisposed to be bad at math. Apparently she is almost certain that I have dyscalculia, which – other than anxiety – was the main diagnosis that came about from this test. However, as my Mom was explaining to me, I answered very negatively about myself in comparison to how my parents asnwered about me, so she said that it was mainly a self-esteem issue, and "So it's not autism, or aspergers," even though I didn't ask about that. She then went on to ask me if I think I have Asperger's, to which I replied "Once, but not anymore." As all my friends on this website know, this is an extreme lie. I was actually shocked to hear that there was no suspicion of me being on the spectrum. After all, in my first thread I had many of you guys tell me how similar my experiences were to yours, and after interacting with so many of you I felt like we understood each other. Of course, we are not all the same by any means, but we had common issues. After taking so many online tests and reading so many articles, I really, honestly thought I had Aspergers. Is it really just my self-esteem is too low? Sure, but that can't be the only reason. Are my parents oblivious? My mom admitted that at one point she thought I had Asperger because of my social problems. I just denied it so she wouldn't freak out on me. Or was the report/diagnosis ignorant as well? After all, it's been proven that girls with Asperger's act much different to boys, and are less likely to be diagnosed. Perhaps this is the issue? Honestly, I'm not sure. But after spending so long feeling like I was in fact on the spectrum, I truly thought there was no other explanation. Can any self-diagnosed or misdiagnosed fellow Aspies possibly give me some advice? I really dont' know how to end this thread, I just thought that maybe any of you guys – well, actually, girls would be even more useful – could maybe help me make sense of this? You haven't let me down before

Thank you so much,
Phantom

 

[Streetwise]

Hi all,

It's been a really long time since I've made a thread, and I have to say I missed it. I liked venting and having you all give advice and share similar experiences, which always helped. As those who are familiar with me may know, I've been fighting for a couple years now to get testing done, even though my parents kept on putting it off. Well, after starting High School (which was the main reason I stopped posting so often sooo much work) and having my school counselors be involved (since they kept on getting notified about my bad grades), they talked to my parents and suggested I do got psycho-ed testing done. I though it was going to end up the same way as it did with my therapist, getting a referral only to have my parents flake out, but for whatever reason it finally went through. Testing was all right, it was pretty long though, and my Mom was almost appalled at the questionnaire she had to fill out, since some of the questions asked if I had ever committed any sort of crime, etc. ( slighty extreme things like that). My lady who tested me was really nice, and since she specialized in autism I thought I might finally get the answer to whether or not I had Aspergers (especially since she has a daughter and is a woman, I thought she'd understand the gender differences in Aspergers). Also, the questionnaires included a lot of social questions, I thought she might get a hint, LOL.

However, I just got the results back today. I am above average tin a lot of reading/writing related areas, but my organization in general is quite poor, and my suspicions were confirmed, I am naturally predisposed to be bad at math. Apparently she is almost certain that I have dyscalculia, which – other than anxiety – was the main diagnosis that came about from this test. However, as my Mom was explaining to me, I answered very negatively about myself in comparison to how my parents asnwered about me, so she said that it was mainly a self-esteem issue, and "So it's not autism, or aspergers," even though I didn't ask about that. She then went on to ask me if I think I have Asperger's, to which I replied "Once, but not anymore." As all my friends on this website know, this is an extreme lie. I was actually shocked to hear that there was no suspicion of me being on the spectrum. After all, in my first thread I had many of you guys tell me how similar my experiences were to yours, and after interacting with so many of you I felt like we understood each other. Of course, we are not all the same by any means, but we had common issues. After taking so many online tests and reading so many articles, I really, honestly thought I had Aspergers. Is it really just my self-esteem is too low? Sure, but that can't be the only reason. Are my parents oblivious? My mom admitted that at one point she thought I had Asperger because of my social problems. I just denied it so she wouldn't freak out on me. Or was the report/diagnosis ignorant as well? After all, it's been proven that girls with Asperger's act much different to boys, and are less likely to be diagnosed. Perhaps this is the issue? Honestly, I'm not sure. But after spending so long feeling like I was in fact on the spectrum, I truly thought there was no other explanation. Can any self-diagnosed or misdiagnosed fellow Aspies possibly give me some advice? I really dont' know how to end this thread, I just thought that maybe any of you guys – well, actually, girls would be even more useful – could maybe help me make sense of this? You haven't let me down before

Thank you so much,
Phantom

Welcome I was surprised I was on the spectrum as someone suggested something else .
Maybe get it done again .?other people have !I don't know if it helped but I had a team evaluating me three women a speech therapist psychologist can't remember the last one

 

[Major]

Was the doctor specifically testing/looking for autism spectrum disorder? A diagnostic test for this would not be the same as testing for other issues I would guess?

 

[The Phantom]

Welcome I was surprised I was on the spectrum as someone suggested something else .
Maybe get it done again .?other people have !I don't know if it helped but I had a team evaluating me three women a speech therapist psychologist can't remember the last one

Hi Streetwise,

thank you very much for the reply and advice. Unfortunately, my parents are now completely fed up of testing (they asked if this would be the final psych related thing I wanted to have done), since I was seeing a therapist before, and naturally that along with the testing cost quite a bit of money. We are fortunate enough not to be short of money, but don't live as luxuriously as the rest of our community/friends, so they don't want to spend money wastefully, or what they might take as being wasteful. With that in mind, however, I would definitely like to get testing done once I'm an adult and on my own. That's interesting about you being surprised about being on the spectrum, I know the extreme overlap of conditions makes us believe we have something else entirely again, thank you very much for taking the time to help and share you experiences. It's very much appreciated!

- Phantom

 

[The Phantom]

Was the doctor specifically testing/looking for autism spectrum disorder? A diagnostic test for this would not be the same as testing for other issues I would guess?

Hi Major,
no, it was not specifically for autism. It was for learning disabilities, however since it was Psycho-ed I assumed they would be covering any other joint conditions as well, since a lot of the questions we had to fill out were more on the social/emotional side of things, and some of them very much seemed like symptoms for Aspergers. Also, the lady who was testing me specialized in autism and other developmental disabilities, so I figured she might have detected or had a hunch of that, even if she wasn't going to flat-out diagnose me with such. My therapist was not licensed for diagnosis in the country that I live, so she couldn't do anything formally, however she also specialized in autism and suggested that I could have Aspergers, or otherwise a Non-verbal learning disorder, and perhaps OCD (I do not remember, although since I do in fact have (undiagnosed) OCD it was likely that was the other option. I'll have to double-check the records, anyways I will be meeting with the lady who did my testing soon, so I'll see. Thank you for your reply

 

[Major]

Okay. I was tested for learning disabilities through school by similar people of experience and autism was not detected (I had been diagnosed with other disorders previous) but rather my learning disabilities were scored. They take a pretty thorough history for this as well to rule out any other causes of learning problems. It never would have resulted in an autism diagnosis at that time because it was specifically designed to test for learning deficiency not autism nor mental health even though we had to report on those aspects for the testing. I did not receive diagnosis until I was at a clinic specifically for people with autism. Referred by a therapist who made the diagnosis not knowing how to help with autism spectrum disorder but was knowledgeable enough to know my previous diagnosis were inaccurate.. many years later.

 

[The Phantom]

Okay. I was tested for learning disabilities through school by similar people of experience and autism was not detected (I had been diagnosed with other disorders previous) but rather my learning disabilities were scored. They take a pretty thorough history for this as well to rule out any other causes of learning problems. It never would have resulted in an autism diagnosis at that time because it was specifically designed to test for learning deficiency not autism nor mental health even though we had to report on those aspects for the testing. I did not receive diagnosis until I was at a clinic specifically for people with autism. Referred by a therapist who made the diagnosis not knowing how to help with autism spectrum disorder but was knowledgeable enough to know my previous diagnosis were inaccurate.. many years later.

Ahhh, I see. That makes a lot more sense now, thank you. I was hoping this was specifically a learning disability-only diagnosis, and that I could get a separate diagnosis for other conditions in the future.

Again, thanks for sharing you experience, that really helps my understand of this whole situation.

 

[xudo]

I was tested for learning disabilities in university. Came out that I have mild dyslexia and severe dyscalculia. The test wouldn't (and didn't) show up anything else, because the tests were specifically looking for learning problems.

When I was diagnosed with Asperger's last year, the test was specifically geared towards finding out whether or not I was on the spectrum. I had to fill out 2 questionnaires, and one of them was the Autism quotient, so again specifically about ASD.

 

[Streetwise]

I was tested for learning disabilities in university. Came out that I have mild dyslexia and severe dyscalculia. The test wouldn't (and didn't) show up anything else, because the tests were specifically looking for learning problems.

When I was diagnosed with Asperger's last year, the test was specifically geared towards finding out whether or not I was on the spectrum. I had to fill out 2 questionnaires, and one of them was the Autism quotient, so again specifically about ASD.

Can I ask does the medical profession in wales only ever say learning disability ?it's just in n.england they said learning difficulties and that I didn't have a learning disability which meant they wouldn't test me for my memory problem =(=(

 

[Manuheleku]

Hi Streetwise,

thank you very much for the reply and advice. Unfortunately, my parents are now completely fed up of testing (they asked if this would be the final psych related thing I wanted to have done), since I was seeing a therapist before, and naturally that along with the testing cost quite a bit of money. We are fortunate enough not to be short of money, but don't live as luxuriously as the rest of our community/friends, so they don't want to spend money wastefully, or what they might take as being wasteful. With that in mind, however, I would definitely like to get testing done once I'm an adult and on my own. That's interesting about you being surprised about being on the spectrum, I know the extreme overlap of conditions makes us believe we have something else entirely again, thank you very much for taking the time to help and share you experiences. It's very much appreciated!

- Phantom

I agree, when you are older and not financially connected to your parental units you can be retested again. You will most likely need to be diagnosed by an aspergers/autism specialist. Save a copy of your test results or make sure that the specialist you hire has access to them. This is what I did and my psychiatrist was surprised by my previous diagnosis of social anxiety, and it made it easier for him to give me a diagnosis and also discover that I was also ADHD.

 

[WereBear]

This is not (yet) a "look at these lab results" kind of test. Especially at the higher functioning end, it is expertise. Which is hard to come by.

I called all over my end of the country and wound up driving three hours away and staying overnight for two nights to take a six hour test with an highly experienced person with a lot of credentials about diagnosing women. Just to avoid the issue you are dealing with now.

It constantly boggles my mind and infuriates me that People Need Help but then they have to be crammed into some kind of slot before they get it.

What if your problem is that you don't fit in a slot? Tough on you, I guess.

The reason it matters to you is how it impacts your education. You would do much better if you get help, and I don't think you got it. "Low self esteem" is not a diagnosis, it's a judgement call. I am not impressed with your diagnostic person.

 

[isthisreallife]

What everyone else said, go to someone who specializes in autism and get tested for ASD specifically. I've been to psychologists before I went to a specialist, they never picked up on it. Although, I didn't suspect autism until two years before my diagnoses at 34, it was only boys who got autism after all
I asked the specialist if she had experience with autism in women, when she answered yes, I went with her.
It sucks, knowing that something more is going on, and getting a billion different diagnoses' that explain some things, but leave many others out. We're here for you in any case, don't get discouraged.

 

[Momo]

It sounds like the test you did wasn't looking for autism. I know I did a bunch if tests when I was younger for learning disabilities in a University study, but when they just couldn't figure out what was wrong with me, as I didn't really speak and had serious issues understanding people, they decided to go further. Apparently I had no learning disability that they could detect, but is was pretty obvious that something was wrong. When a psychologist suggested it was Aspergers due to the testing results and her work she had done with me, my father decided to pull out of the whole thing due to "stigma". So, that was the end of that. I stil, haven't gone back to get a diagnosis, but I can be fairly certain of what the results would be from my prior testing. Don't think that one test can diagnose you.

 

[The Phantom]

This is not (yet) a "look at these lab results" kind of test. Especially at the higher functioning end, it is expertise. Which is hard to come by.

I called all over my end of the country and wound up driving three hours away and staying overnight for two nights to take a six hour test with an highly experienced person with a lot of credentials about diagnosing women. Just to avoid the issue you are dealing with now.

It constantly boggles my mind and infuriates me that People Need Help but then they have to be crammed into some kind of slot before they get it.

What if your problem is that you don't fit in a slot? Tough on you, I guess.

The reason it matters to you is how it impacts your education. You would do much better if you get help, and I don't think you got it. "Low self esteem" is not a diagnosis, it's a judgement call. I am not impressed with your diagnostic person.

Hi WereBear,

Thank you for the reply, and for sharing your experience. It's god to know, however scarce, that there are professionals with lots of experience when it comes to diagnosing women. Of course, I know this wasn't a lab results kind of thing, but I was surprised to see my Mom rule out any chance of Aspergers so quickly. Then again, it was probably wishful thinking on her part. And yes, I agree, it's frustrating to have to be put in a box before getting help, but alas, that's the way the world works. Hopefully that can change one day.

I wouldn't say I fit into a slot for anything, really, but from what I've read from women with autism and their experiences and the like, I do find that I match the symptoms for Aspie women rather well, moreso than the average Asperger's symptoms checklist. I think the issue is finding someone who recognizes the gender difference, as you may have.

Also, I do not think I was very clear. I did this solely for the purpose of my education, for learning disabilities, and they did in fact confirm what I had believed for a while (in regards to my math issues), and I will in fact be receiving extra help for that, which I am grateful for. The original purpose of this test was completed. However, I didn't mean that "low self-esteem" was in any way a result of my testing, or a diagnosis. My mom just inferred this was the main issue, because of how negatively I answered questions about myself compared to how my parents did. She thinks that my other issues (social, emotional, etc/) come from low self-esteem, and not Aspergers. I can assure you, my diagnostic person was very professional and did a good job of giving me my wanted results. The issue is my Mom took it as a test for every sort of condition possible, and since there were no recorded signs of Aspergers that it was impossible for me to have it. But thinking about it, they didn't formally diagnose OCD, even though the lady who tested me acknowledged I have it, even if it is on the milder side.

Thanks again,
Phantom

 

[xudo]

Can I ask does the medical profession in wales only ever say learning disability ?it's just in n.england they said learning difficulties and that I didn't have a learning disability which meant they wouldn't test me for my memory problem =(=(

I've heard it referred to as both 'difficulties' and 'disabilities'. However, growing up things like dyslexia was always referred to as a learning disability. Could be different now I guess.

 

[Streetwise]

I've heard it referred to as both 'difficulties' and 'disabilities'. However, growing up things like dyslexia was always referred to as a learning disability. Could be different now I guess.

Great I'm stuffed

 

[Suzanne]

I ventured once to say I had aspergers to my general dr and she must have been cogitating about it, because suddenly she pipes up and shakes her head and said: nope, I do not believe you have autism ( I said, aspergers actually) and her reasoning is that she has many clients who are autistic and no way do I act like them. I chose to button my mouth, because I might say something I would regret.

I am now waiting for an appointment to see a psychiatrist, hopefully this month and this time, I am not going to talk about aspergers, but just concentrate on the information that the dr handed to them, that I have extreme social anxiety.

I just cannot go through the mental anguish of being told that I have not got something that I know I have.

Many year's ago, I was accused by a therapist, that I did not have social anxiety. She based this on the fact that I was there alone and very well dressed and spoke well and did not abuse drugs etc. She was closed eared on how much of a mental torture I went through, to just get out the front door!

Just because an assessment comes back that mentions anything but aspergers, does not mean they are right. Yes, they are trained? But trained in what exactly? Perhaps trained in the sterotypical way? Because if it was all hinged around a montoned voice and blank stare, I would be dismissed!

Most people that get to know me, have no issue believing I have aspergers and yesterday, I was with an NT and she even mocks me because I did not get that she was joking with me. She also told me that I had to be careful with the obsessions. Lol she has no idea how much I discipline myself!

It is frightening when you feel you have all guns firing at you; you feel you cannot put your hands up and say: enough!

 

[Mike Stouffer]

If you feel you have issues that could be Aspergers related it's important you research triggers and what leads to what. You could go to ten different counseling people and end up having ten different opinions. If you can relate and understand what your friends and support system here share, and it improves your life, this is what's important. I know it's also important for you to get on the same page as your parents but sometimes they look at things as being broken and then feel like they are at fault so don't. Which is too bad. We are not broken people, we just march to a different drummer. What's important are things that impact your life and trying hard to better them. Which it sounds like you are doing. Keep on keeping on. In time others may see a difference and you can share that help and new tools has come from your ASD support group. A tool box that helps tremendously.

 

[Nitro]

An autism spectrum disorder diagnosis become increasingly subjective the higher functioning an individual is.

I had a psychologist actually agree with me that the final outcome of the event would be affected by either the schooling they were trained in,or even followed once put into practice with other professionals.

The flip side of the coin is that some say you are shopping for a diagnosis if you seek other opinions and arrive at the one that you feel suits you best.

No matter what route you take or whose advice you follow,nothing will change inside of you no matter what label has been attached to you.

 

[WereBear]

I did this solely for the purpose of my education, for learning disabilities, and they did in fact confirm what I had believed for a while (in regards to my math issues), and I will in fact be receiving extra help for that, which I am grateful for.

I'm so glad about that!

No matter what route you take or whose advice you follow,nothing will change inside of you no matter what label has been attached to you.

Wise words indeed. I decided, even before diagnosis, that if I did something that was known to be helpful for Aspies, and that thing did help, then I was better off.

Everything else, from anyone else, is commentary.