Self-Diagnosed Female Seeking a Formal Diagnosis (Aspergers Syndrome)

HollyBobbins · Dec 5, 2016

About four years ago, I was speaking with an older family friend and mentioned that I feel like I'm different to others. She has known me since I was born and has professed in social work. She told me that, particularly as a child she has noticed that I show traits of Aspergers syndrome.

Having never heard of this syndrome, I began to research what it is and identified heavily with what I was reading. I remember feeling extremely relieved to finally have an explanation for some of my behaviours and characteristics.
For these past four years, I have identified as someone who has Aspergers syndrome. However when I wish the explain this to someone, I feel that I don't really have the right to due to not having a formal diagnosis.

Over the years I do often go back to articles about the syndrome, especially at times when I am feeling socially rejected or misunderstood; either by other people or at times even myself.
I have developed a drinking problem because I self-medicate my social anxiety with alcohol in order to enjoy social situations. As someone who also suffers with anxiety and depression this has further damaged my mental health. I am trying to quit drinking but my social dependence on it has made this extremely challenging.

I understand that it is common for experts to have trouble diagnosing Aspergers in women.
I think that a formal diagnosis would be a significant step forward in becoming more at ease with myself and also feeling that I can rightfully be open about it with others would be a significant weight lifted off my shoulders.
However, I am really concerned about being turned away undiagnosed. The one explanation that I have to hold on to will be taken away from me and I'll be back to square one and lose the one bit of sense of self that I have.
This would be devastating for me and is the reason why I have held off obtaining the diagnosis for so long.

I'm not sure what to do, it feels somewhat invalid without a formal diagnosis. Would you recommend me looking into getting one and could you tell me what the process would entail?

I'm sorry for the long post but thank you so much if you have read this far. Any help and/or advice will be greatly appreciated!

tree · Dec 5, 2016

If you haven't already seen it, you might find this thread to be of interest:
https://www.aspiescentral.com/threads/alcoholism-undiagnosed-aspergers.912/

Here are some others on the general topic of seeking a diagnosis:

https://www.aspiescentral.com/threads/how-important-is-an-official-diagnosis.17613/

https://www.aspiescentral.com/threads/hi-please-advise-on-seeking-diagnosis.16985/

https://www.aspiescentral.com/threads/waiting-for-a-diagnosis.16266/

https://www.aspiescentral.com/threa...e-worst-thing-thats-ever-happen-to-her.17500/

puzzlingbill · Dec 5, 2016

Welcome to the site.

Like you, when I started reading about AS, I could strongly identify. It helped explain a lot of things I've had problems with, including the self-medicating. It helped me a lot to know that some of my problems were the result of something other than my inadequacies.

According to an online test, I'm right on the line between AS and normal (whatever that is). I exhibit some but not all of the symptoms. Fortunately, I don't have skeptical family or employers to convince, so I probably won't seek a formal diagnosis. If you need one, I'm sure the resources Tree listed can help with that.

Creepi · Dec 5, 2016

I'm personally in favour of consulting a professional, since if it turns out not to be autism they may be able to suggest the cause of your symptoms. However, I am aware that even professionals may not always be able to make the most accurate of diagnoses. Though if the uncertainty troubles you, I would definitely recommend going to one who can take quick action in assessing (I had to wait half a year for assessment, but my friend went private and managed to get a diagnosis within two weeks- which was almost ironically later deemed inaccurate).

There are certain further online tests to ease uncertainty that I would recommend you to take if you still dislike the idea of going to a professional:

Autism And Asperger's Quiz | Psych Central

The AQ-test; The Autism Spectrum Quotient

Your details

If you're informed that autism is likely by all three of these tests, the probability of a professional telling you that you're not autistic is, in my opinion, very low.

There are also these useful articles:

How to Recognize Autism Symptoms in Yourself

Conditions That Resemble Autism - dummies

LittleLemon · Dec 5, 2016

I felt exactly the same way as you--with pretty much everything you said. I drink a lot when I'm out, especially with people I don't know. I can't talk if I don't. I was also afraid to walk away with no diagnosis.

I would go for a professional assessment. It can be a powerful tool in helping understand yourself. At the very least, it will help ease your mind. I know I was obsessing for months before I finally made the call. I decided I had had enough. My therapist didn't get me, nothing helped, so I needed counseling tailored to me.

I know what you mean about not feeling like you have the right. I've tried confiding in a few people and was met with a 'yeah, right' attitude. I think it's largely from really not knowing what autism actually is and how wide the spectrum is. They think of the stereotype portrayed on tv. Even after my diagnosis, the person I confided with started talking about self fulfilling prophecy and how it was all in my head. She kept saying, "Linda, you are normal!" She was assuming I thought negatively about it. It was irritating.

My actual appointment was actually disappointingly easy. I think I was expecting to have to prove it. She took a quick look at my test I took, had a 2 hour long interview, and noted that I had 2 special needs kids. With all those combined, she was able to diagnose me with Asperger's. I have to take a few more tests, but it's been at least confirmed.

HollyBobbins · Dec 5, 2016

LittleLemon said:
I felt exactly the same way as you--with pretty much everything you said. I drink a lot when I'm out, especially with people I don't know. I can't talk if I don't. I was also afraid to walk away with no diagnosis.

I would go for a professional assessment. It can be a powerful tool in helping understand yourself. At the very least, it will help ease your mind. I know I was obsessing for months before I finally made the call. I decided I had had enough. My therapist didn't get me, nothing helped, so I needed counseling tailored to me.

I know what you mean about not feeling like you have the right. I've tried confiding in a few people and was met with a 'yeah, right' attitude. I think it's largely from really not knowing what autism actually is and how wide the spectrum is. They think of the stereotype portrayed on tv. Even after my diagnosis, the person I confided with started talking about self fulfilling prophecy and how it was all in my head. She kept saying, "Linda, you are normal!" She was assuming I thought negatively about it. It was irritating.

My actual appointment was actually disappointingly easy. I think I was expecting to have to prove it. She took a quick look at my test I took, had a 2 hour long interview, and noted that I had 2 special needs kids. With all those combined, she was able to diagnose me with Asperger's. I have to take a few more tests, but it's been at least confirmed.

It's lovely to receive a reply from someone who has been through something very similar to what I am at the moment. The alcoholism has become a big problem as I, too struggle to engage socially without having a drink.

When opening up to certain people about my potential Aspergers, this is a response that I am also met with on occasion, which does hinder me in actually going about getting a diagnosis. The thing is, as with a lot of people with an ASD, the traits were so much more prominent when I was a child.

I will have a look into getting the diagnosis, I think. I have been under the impression that I will have to make an effort to prove it also, which has help me back.

Thank you for your response!

HollyBobbins · Dec 5, 2016

Creepi said:
I'm personally in favour of consulting a professional, since if it turns out not to be autism they may be able to suggest the cause of your symptoms. However, I am aware that even professionals may not always be able to make the most accurate of diagnoses. Though if the uncertainty troubles you, I would definitely recommend going to one who can take quick action in assessing (I had to wait half a year for assessment, but my friend went private and managed to get a diagnosis within two weeks- which was almost ironically later deemed inaccurate).

There are certain further online tests to ease uncertainty that I would recommend you to take if you still dislike the idea of going to a professional:

Autism And Asperger's Quiz | Psych Central

The AQ-test; The Autism Spectrum Quotient

Your details

If you're informed that autism is likely by all three of these tests, the probability of a professional telling you that you're not autistic is, in my opinion, very low.

There are also these useful articles:

How to Recognize Autism Symptoms in Yourself

Conditions That Resemble Autism - dummies

Thank you for your response.
I took the Psych Central screening and scored 38 (autism likely). Thank you for the link!

HollyBobbins · Dec 5, 2016

tree said:
If you haven't already seen it, you might find this thread to be of interest:
Alcoholism/undiagnosed aspergers.

Here are some others on the general topic of seeking a diagnosis:

How important is an official Diagnosis?

Hi - please advise on seeking diagnosis

Waiting for a diagnosis

"This diagnosis is the worst thing that's ever happen to her"

Thank you for taking your time to send a list of threads - I will make sure to sit down and have a good read when I find the time to.

Maitri · Dec 6, 2016

I wasn't diagnosed until the age of 39. I sought it out because I'd had yet another problem at yet another employer.

It was a huge boon for me because at the next employer I was able to say, I have Asperger's, just understand that, I might have problems with X and Y. I've had some snags but everyone has been very understanding and worked with me on it.

I don't drink often because I don't like that loss of control, but I do remember times in my 20's when I would drink more than I should have because I wanted to get along with the people I was with.

ksheehan88 · Dec 6, 2016

Hi

I'm in a similar boat... yesterday I went to my first therapy session, told her I thought I had AS, and the therapist agreed to refer me for assessment. (about a 9 month wait apparently!)

For me, a professional diagnosis will put me at ease... Right now, despite being certain, I won't refer to myself as an aspie because I haven't been assessed and therefore do not know for definite... It would make me feel like a fraud. Some people are happy with a self-diagnosis, but I;m just torturing myself with obsessive thoughts about it so I need to know.

I use alcohol as a medium for socialising too - have done since I was a teenager... I don't do much socialising though so its not a big problem anymore.

Grandmother B · Dec 6, 2016

HollyBobbins said:
About four years ago, I was speaking with an older family friend and mentioned that I feel like I'm different to others. She has known me since I was born and has professed in social work. She told me that, particularly as a child she has noticed that I show traits of Aspergers syndrome.

Having never heard of this syndrome, I began to research what it is and identified heavily with what I was reading. I remember feeling extremely relieved to finally have an explanation for some of my behaviours and characteristics.
For these past four years, I have identified as someone who has Aspergers syndrome. However when I wish the explain this to someone, I feel that I don't really have the right to due to not having a formal diagnosis.

Over the years I do often go back to articles about the syndrome, especially at times when I am feeling socially rejected or misunderstood; either by other people or at times even myself.
I have developed a drinking problem because I self-medicate my social anxiety with alcohol in order to enjoy social situations. As someone who also suffers with anxiety and depression this has further damaged my mental health. I am trying to quit drinking but my social dependence on it has made this extremely challenging.

I understand that it is common for experts to have trouble diagnosing Aspergers in women.
I think that a formal diagnosis would be a significant step forward in becoming more at ease with myself and also feeling that I can rightfully be open about it with others would be a significant weight lifted off my shoulders.
However, I am really concerned about being turned away undiagnosed. The one explanation that I have to hold on to will be taken away from me and I'll be back to square one and lose the one bit of sense of self that I have.
This would be devastating for me and is the reason why I have held off obtaining the diagnosis for so long.

I'm not sure what to do, it feels somewhat invalid without a formal diagnosis. Would you recommend me looking into getting one and could you tell me what the process would entail?

I'm sorry for the long post but thank you so much if you have read this far. Any help and/or advice will be greatly appreciated!

I would go to neuropsychologist. They will give you some tests and provide a diagnosis. A mental health facility nearby might have one on staff. If not, they could point you in the right direction. Also, you might find some help in the meantime by visiting this web site run by two young men with Asperger's. www.aspergerexperts.com Good luck!

Phillip Cowdrey · Dec 6, 2016

HollyBobbins said:
About four years ago, I was speaking with an older family friend and mentioned that I feel like I'm different to others. She has known me since I was born and has professed in social work. She told me that, particularly as a child she has noticed that I show traits of Aspergers syndrome.

Having never heard of this syndrome, I began to research what it is and identified heavily with what I was reading. I remember feeling extremely relieved to finally have an explanation for some of my behaviours and characteristics.
For these past four years, I have identified as someone who has Aspergers syndrome. However when I wish the explain this to someone, I feel that I don't really have the right to due to not having a formal diagnosis.

Over the years I do often go back to articles about the syndrome, especially at times when I am feeling socially rejected or misunderstood; either by other people or at times even myself.
I have developed a drinking problem because I self-medicate my social anxiety with alcohol in order to enjoy social situations. As someone who also suffers with anxiety and depression this has further damaged my mental health. I am trying to quit drinking but my social dependence on it has made this extremely challenging.

I understand that it is common for experts to have trouble diagnosing Aspergers in women.
I think that a formal diagnosis would be a significant step forward in becoming more at ease with myself and also feeling that I can rightfully be open about it with others would be a significant weight lifted off my shoulders.
However, I am really concerned about being turned away undiagnosed. The one explanation that I have to hold on to will be taken away from me and I'll be back to square one and lose the one bit of sense of self that I have.
This would be devastating for me and is the reason why I have held off obtaining the diagnosis for so long.

I'm not sure what to do, it feels somewhat invalid without a formal diagnosis. Would you recommend me looking into getting one and could you tell me what the process would entail?

I'm sorry for the long post but thank you so much if you have read this far. Any help and/or advice will be greatly appreciated!

Hi
You need to go to a doctor and he/she will refer you to the hospital for an official assessment.It took me over a year to get the appointment but its definitely worth it.Made me understand things better.You really need to get help and don't hold anything back however embarrassing it may be.Good luck and I hope you find your peace.

phoe · Dec 6, 2016

Are you in the UK ? If so, start with your doctor, and ask about the diagnostic pathway for adults with autism - this is a specific bit of legislation that should bear fruit.

I was formally diagnosed at 43 after trying to get somewhere via my doctor for 3 years. It took about 3 days after asking the local patient advisory liaison service, referencing the pathway, to get booked in for an assessment.

The process took a couple of months in total, with interviews with parents, old school reports were useful, and you get to do a few cognitive exercises (not scary, pattern matching stuff mainly)

jayraytee · Dec 6, 2016

I've always been an "alien" observer, even through grade school, I felt like there were the kids and then there was me. Teachers wrote on my report card that I was very adult even in 2nd grade, etc.

I 'self-diagnosed' when I was in my late thirties, but I frankly hate that concept. There are a lot of issues people can have that can seem like Aspergers syndrome that really isn't Aspergers Syndrome. A person can be an introvert with Social Anxiety and assume they have Aspergers Syndrome for example, when they don't.

To get an official diagnosis, you have to meet a series of certain traits. It can be subjective in the sense that, every true aspie develops coping mechanisms to over come the issues aspies face. Which ends up meaning every true aspie is different. The original issues are the same, but they are masked differently by every individual person.

I wanted and got an official diagnosis in my early forties, mainly because I want to know for sure what exactly it is. Not to label it, or put me in a box, but I believe you can't work on something without truly knowing what it is you are working on. A lot of things can be mistaken for a heart attack, an anxiety attack can be for example. You "treat" an anxiety attack very differently than a heart attack though. It's important to know which you are having. And sometimes it's best to see an actual doctor that knows enough to make the real accurate determination.

When it comes to aspects of the mind, its 100 times more complicated than the physical body. As an aspie, I feel no social anxiety, I have a hard time feeling or recognizing many emotions. But I was not only diagnosed with Aspergers Syndrome but also general anxiety, which means I don't 'feel' anxious, it comes out as a headache or back pain.

My point is, get an official diagnosis if you can. I've seen a lot of people on forums and aspie sites that I stopped going to because of all the erroneous information suggesting that people don't need an official diagnosis. I've also seen a lot of people on those forums and sites describe themselves and their struggles and say they have self diagnosed aspergers syndrome even though their 'issues' are counterintuative to aspergers syndrome.

It's become the new thing, everyone who feels different just jumps to that and is encouraged by the other members of these sites that likewise just jumped to it on their own. Aspergers Syndrome has got in the news, is well known, and has even become somewhat 'a hip community to be a part of.' But there are a lot of other similar diagnosis-es that people could actually be suffering from that have different impacts on your life. You must make sure you are focused in the right place.

HollyBobbins · Dec 6, 2016

jayraytee said:
I've always been an "alien" observer, even through grade school, I felt like there were the kids and then there was me. Teachers wrote on my report card that I was very adult even in 2nd grade, etc.

I 'self-diagnosed' when I was in my late thirties, but I frankly hate that concept. There are a lot of issues people can have that can seem like Aspergers syndrome that really isn't Aspergers Syndrome. A person can be an introvert with Social Anxiety and assume they have Aspergers Syndrome for example, when they don't.

To get an official diagnosis, you have to meet a series of certain traits. It can be subjective in the sense that, every true aspie develops coping mechanisms to over come the issues aspies face. Which ends up meaning every true aspie is different. The original issues are the same, but they are masked differently by every individual person.

I wanted and got an official diagnosis in my early forties, mainly because I want to know for sure what exactly it is. Not to label it, or put me in a box, but I believe you can't work on something without truly knowing what it is you are working on. A lot of things can be mistaken for a heart attack, an anxiety attack can be for example. You "treat" an anxiety attack very differently than a heart attack though. It's important to know which you are having. And sometimes it's best to see an actual doctor that knows enough to make the real accurate determination.

When it comes to aspects of the mind, its 100 times more complicated than the physical body. As an aspie, I feel no social anxiety, I have a hard time feeling or recognizing many emotions. But I was not only diagnosed with Aspergers Syndrome but also general anxiety, which means I don't 'feel' anxious, it comes out as a headache or back pain.

My point is, get an official diagnosis if you can. I've seen a lot of people on forums and aspie sites that I stopped going to because of all the erroneous information suggesting that people don't need an official diagnosis. I've also seen a lot of people on those forums and sites describe themselves and their struggles and say they have self diagnosed aspergers syndrome even though their 'issues' are counterintuative to aspergers syndrome.

It's become the new thing, everyone who feels different just jumps to that and is encouraged by the other members of these sites that likewise just jumped to it on their own. Aspergers Syndrome has got in the news, is well known, and has even become somewhat 'a hip community to be a part of.' But there are a lot of other similar diagnosis-es that people could actually be suffering from that have different impacts on your life. You must make sure you are focused in the right place.

I get what you're saying.. I have social anxiety in very specific social situations but not all.
Like you, I have difficulty recognising my own emotions. I have recently come out of a relationship which collapsed partially due to my inability to articulate how I am feeling (because I didn't even know myself). She also once told me that I'm the coldest person that she's ever met.
I'm not sure if you thought that I was implying that I must have Aspergers due to having struggles in social situations only but there are so many reasons why I believe I do have it. I didn't realise that it had become a "thing" or was considered to be a 'hip community to be a part of'. It saddens me that a cognitive disorder has become somewhat trendy to some people.
Personally, a diagnosis will not change the way I live my life nor will it change who I interact with or how. A diagnosis will just explain a lot of odd behaviours and traits that I have displayed throughout my life which have gotten me down.
I, too dislike the concept of self-diagnosing because although I have done a lot of reading up about AS, I am by no means an expert. However, I do identify with the majority of what I have read about the syndrome and people who have it.

Thank you for your response, I think I will look into a diagnosis.

HollyBobbins · Dec 6, 2016

phoe said:
Are you in the UK ? If so, start with your doctor, and ask about the diagnostic pathway for adults with autism - this is a specific bit of legislation that should bear fruit.

I was formally diagnosed at 43 after trying to get somewhere via my doctor for 3 years. It took about 3 days after asking the local patient advisory liaison service, referencing the pathway, to get booked in for an assessment.

The process took a couple of months in total, with interviews with parents, old school reports were useful, and you get to do a few cognitive exercises (not scary, pattern matching stuff mainly)

I am in the UK, yes.
Thank you for your help - I will look into this.

HollyBobbins · Dec 6, 2016

Phillip Cowdrey said:
Hi
You need to go to a doctor and he/she will refer you to the hospital for an official assessment.It took me over a year to get the appointment but its definitely worth it.Made me understand things better.You really need to get help and don't hold anything back however embarrassing it may be.Good luck and I hope you find your peace.

Thank you, Phillip.

ksheehan88 · Dec 6, 2016

HollyBobbins said:
I am in the UK, yes.
Thank you for your help - I will look into this.

I;m not sure about where you live, but where I am we have Outlook SouthWest, they have a website that you can self refer on... It might be worth looking into whats in your area, you may be able to self refer too

HollyBobbins · Dec 6, 2016

ksheehan88 said:
Hi

I'm in a similar boat... yesterday I went to my first therapy session, told her I thought I had AS, and the therapist agreed to refer me for assessment. (about a 9 month wait apparently!)

For me, a professional diagnosis will put me at ease... Right now, despite being certain, I won't refer to myself as an aspie because I haven't been assessed and therefore do not know for definite... It would make me feel like a fraud. Some people are happy with a self-diagnosis, but I;m just torturing myself with obsessive thoughts about it so I need to know.

I use alcohol as a medium for socialising too - have done since I was a teenager... I don't do much socialising though so its not a big problem anymore.

This is how I feel about identifying as an aspie. I have spoken to a handful of people about it when I've felt that it might have been necessary but I have never implied that I have actually been diagnosed and have always stressed that it's just something that I really identify with.

Best of luck to you in getting you diagnosis

HollyBobbins · Dec 6, 2016

ksheehan88 said:
I;m not sure about where you live, but where I am we have Outlook SouthWest, they have a website that you can self refer on... It might be worth looking into whats in your area, you may be able to self refer too

I live in South Wales so there MAY be something. I'll have a look - thank you!

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