Adult female diagnosis. Pros, cons, and process

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I can really relate to lexicon's post. I don't have an 'official' diagnosis because the socalled experts don't know what to look for. They are stuck with what they have been trained to see in children and can't begin to understand what its like to be forced to navigate a world with social expectations that are far beyond our abilities. And as a result we train ourselves to mimic and fake certain things the best that we can.

I gave up on them. Its too emotionally difficult to open myself up to someone who will document my private life and call me a liar because he/she was never trained to understand what its like to be me.

I have been very much in doubt if I should get a diagnosis or not. I have been afraid that if I get a diagnosis, the hopelessly incompetent Jobcenter would want to decide what is good for 'one of those with AS' and that their idea of a suitable AS job would be something like assembling clothes pegs

To cut a longer story short, I am now about to get assessed (at the age of 43). I have been looking high and low for someone qualified to assess adult women, but in my country only very few psychiatrists assess adults and only a minority of those have a collaboration with the social security system.
So now I am settling with a psychiatrist who is not a super-expert but who knows about AS to some extent. I hope this will be OK.

I am going to see him next week, which I am somewhat nervous about. What if he doesn't think I have AS, and what if he wants to label me with something else? Also, he is the guy with the prescription pad and that makes me nervous too.

So right now I don't know if the assessment will be a good idea or if I will regret it bitterly. But I will get back with an update next week

My experience is similar to what a few other people have shared. I self-diagnosed AS two years ago (when I was 20) after several years of working closely with ASDs and noticing the similarities. I never had any formal interventions as a child, but my mom got her masters degree in educational psychology, so she knew how to help with certain behaviors even if she didn't understand enough about AS to notice the trend. As a result, I'm very good at "passing" for NT and have a number of coping strategies that are 90-95% effective (depending on the situation). I see no need to seek a formal diagnosis because I can usually adequately explain any quirks/needs on my own, and making it "official" would just cost me money at this point. As mentioned, I've worked closely with AS (and other ASDs) and already have a pretty solid grasp on what it entails. For me, it's enough that for the first time in my life, I can apply my knowledge to understand and then explain, if necessary, what's going on internally.

However, I can see situations in which a formal diagnosis would be beneficial. For example, although there's a lot of debate about whether you should disclose AS to your employer or not, one result of being diagnosed with (and then disclosing) AS is that you fall under the Americans with Disabilities Act and its "reasonable accommodation" clause. This means that if you ever need a task modification or other accommodation in order to perform your job, then your employer is legally obligated to provide that assistance as long as the cost to the company isn't prohibitive (which is almost never is, with AS). If you don't currently need any accommodations, then this doesn't really apply to you, but it is an example of the potential benefits from getting diagnosed.

Basically, I think it's up to you. Based on what you've said, you sound like you're doing just fine as you are and probably don't need to sink money into seeking a formal diagnosis. There are lots of free resources if you need information or other assistance. If you ever do decide that you need a diagnosis, though, then that's entirely your call to make. You know your needs better than anyone else does. If you feel that being formally diagnosed with AS is worth it, then it's worth it. Simple as that.

Reading all of these posts really freaks me out because I am trying to find someone to evaluate me for a diagnosis. So far, I have only found one place that assesses adults. It is an hour away, and they said the evaluation will take 10-15 hours and cost $150/hour. And, of course, my insurance won't pay for it. I am very frustrated because I don't want to spend all that time and money to be told it is all in my head. I don't believe it is all in my head and neither does my husband, but no one else in my life will treat this issue with any respect unless I have an official diagnosis.

I tried to talk to one of my best friends about it, and she barely refrained from laughing at me. I brought it up in a facebook group that I am part of (for introverts) and asked if anyone there had gone through testing. I was attacked from all sides by people demanding to know why I thought I had asperger's and that it just sounded like I had OCD or a personality disorder or was making a big deal out of nothing. My parents always accuse me of overreacting to everything and imagining that I have problems I don't really have. I saw 4 therapists when I was in college trying to determine what was wrong with me. I got a different diagnosis from each one - OCD, PTSD, Avoident Personality DO, and Schizoid Personality DO.

My job really stresses me out, and I am struggling with a lot of things at work. I really want an official diagnosis so I can tell myself, see it is not all in your head and so I can understand better some of the problems I am having. Also, I might change my career goals to something that will better suit my needs and abilities since my current job does not.

Sounds a lot like a scam.

Yeah, it seems very extreme.

As an adult male who can't seem to find anyone knowledgeable about Aspergers outside of children or over the top stereotype cases, I can't see how any female can get that diagnosis. Most of the research is done on males and even though I've pointed out over and over the heavy Autistic traits my girlfriend has NOBODY seems to 'get it'. I've been told countless times she 'absolutely does not' have Autism but she acts almost identical to someone I know with an Aspergers diagnosis here at WP.

I ultimately told her how I felt it was obvious she was on the spectrum and a lack of a label doesn't mean she doesn't have the same sensory issues I face.

Yes, on top of it women were not really studied with it until recently. I think our symptoms do tend to go into different directions or be more covered.

I read somewhere because we are not commonly diagnosed; we tend to be less successful than our male counterparts in jobs etc. We can often drift into relationships which can be harmful or continually drift from job to job. That latter was true for me. I never "fit" in right and had difficulties which were not always my own etc.

We can be commonly misdiagnosed by psychologists too.

But understanding I have it has given me insight now as to why I act the way I do. For example, I misunderstood someone earlier today and we got into a spat. On review, it was due to a misunderstanding of body language and I noted we need to speak more on the verbal level or I may misunderstand behavior. I did apologize. But I was setting expectations too.

It may help to get accommodations at some work places at school i.e. a quiet place needed. It helps with a piece of mind. One does need to worry about insurance issues or if noted employment due to biases? (Hey, I am a women, who is older and who has a handicap!)

The only way I got mine was by finding and going to someone who specializes in AS and HFA in young women.

I am 29 and was diagnosed with " mild" Aspergers a few months back. I have known for a long time that I was a like others my age. After the diagnosis instead of feeling better I feel like a "freak." I'm having a hard time embracing this diagnosis.

I thought I was odd/different for decades... thought autism was only in boys, thought daughter had serious emotional issues which I created, thought I was black sheep of family. We found out our 16 yr old daughter might be on spectrum only because of a trick or treat event which she and our 20 year old aspie neighbor young man (parents are socially friendly to my hubby and I ) so we all went with them as guides... Both "kids" have health issues. So here's these two "kids" trick or treating and I get to chatting w mom of boy and find out females can have AS and decide to have Geana tested. Her female shrink tells us that MAYBE she might fit into the pddnos category but barely. After doing a boatload of researching and online testing, I am totally convinced she was. Found a specialist at children's hospital and eventually to a testing PhD and there you go! Hot on the spectrum with difficulties in daily life and challenges for future career. Thank God. Long story less long? Well after reading Pretending to be Normal aloud with my hubby, he tells me " honey, you have Asperger's ". S I was tested by the same PhD and it was confirmed. It does create a lot of peace in ones life with the confirmation of something that in the past people just thought you were disorganized and a family disaster who was rude and aloof. I'm a happy camper now and my hubby loves his Aspie girls! He comes to our defense and we barely have to mention an thing... He's at our soon to be home in another state. CAN'T WAIT! :)

What state do you live in?

I thought I was odd/different for decades... thought autism was only in boys, thought daughter had serious emotional issues which I created, thought I was black sheep of family. We found out our 16 yr old daughter might be on spectrum only because of a trick or treat event which she and our 20 year old aspie neighbor young man (parents are socially friendly to my hubby and I ) so we all went with them as guides... Both "kids" have health issues. So here's these two "kids" trick or treating and I get to chatting w mom of boy and find out females can have AS and decide to have Geana tested. Her female shrink tells us that MAYBE she might fit into the pddnos category but barely. After doing a boatload of researching and online testing, I am totally convinced she was. Found a specialist at children's hospital and eventually to a testing PhD and there you go! Hot on the spectrum with difficulties in daily life and challenges for future career. Thank God. Long story less long? Well after reading Pretending to be Normal aloud with my hubby, he tells me " honey, you have Asperger's ". S I was tested by the same PhD and it was confirmed. It does create a lot of peace in ones life with the confirmation of something that in the past people just thought you were disorganized and a family disaster who was rude and aloof. I'm a happy camper now and my hubby loves his Aspie girls! He comes to our defense and we barely have to mention an thing... He's at our soon to be home in another state. CAN'T WAIT! :)

What state do you live in?

For the past 2-3 years I've thought that I fall on the spectrum (I'm currently 23). I took an AQ test on Wired and my score was 34 - so I looked up the original research on the validity of the test and it said 80% of people with ASD score above 32, but only 2% of NT score above 32 with males having higher average scores than females. I did some more research and after looking at the symptoms I realized it describes my DAD really well. After showing my mom, she agreed and he was later diagnosed with AS and ADD. It took awhile to find a list of symptoms common to FEMALES vs. males but when I did I had the realization I'm on the spectrum too. All of a sudden my childhood makes sense.

I've gotten much better at pretending to be normal as I've gotten older and I was a residential assistant for 3 years (my university did 2 weeks of training with a procedure and or script with role playing practice for the common situations). But it is still PRETENDING. I think I need a diagnosis because my dream is to go to grad school and my mom wants me evaluated because she is worried that when I get older I could need SS disability and she thinks I could benefit from meds (ADD and anxiety meds).

What exactly does the diagnosis process entail? I'm terrified that the diagnostician won't see my symptoms as being significant enough or close enough to the male profile. My mom was a teacher and proper behavior/expectations were drilled into us from a young age. So I was an "angel" in public and at school (also because I'm a big rule follower) but I was definitely difficult at home (to tired to pretend anymore).

Thanks

Being diagnosed was a good thing for me IMO. I was an adult, I had no reason to do it except that I wanted to know once and for all what the situation was. Knowing what I was up against made it easier to fight back and do the things I wanted, because I had a word that outside people could understand, not just the confusion in my head if things went crazy.

I don't like disclosing it if I don't need to disclose it, but I saw it as a freedom for myself, and I still feel that way. There are risks involved with "stigma" but you know, I don't care. This is who I am, I'm not going to hide and lie and pretend I'm something I'm not.

Diagnosis was good for me. I got it at the tail end of a period when I wasn't doing so well--I'd graduated from college and I'd had no job or job prospects for over two years, and I was feeling kind of down on myself. Diagnosis was helpful in the sense that it gave me a new perspective and consolidated all these pieces of the puzzle (diagnosis of depression, social anxiety disorder, lactose intolerance). It helped me a bit at work getting proper accommodation (a quieter place to do my work uninterrupted). But in grad school, it really hasn't done much. They say we can take advantage of IEPs, but from what I've seen they don't always do what they're supposed to.

Thank you to the OP and everyone who shared their experiences. It's so helpful to hear what other people have been through in getting diagnosed or not getting diagnosed.

Here's what worries me about a diagnosis. Back in my early 20s (I'm 40 now) I went through a bad depression, and several psychologists kindly attempted to help but did no good at all. (Which left me with a not-so-great view of the psychology profession; too many don't seem to realize that some people are looking for answers and solutions, not just someone to listen to them yak.) Eventually I was diagnosed with major depression and started meds that helped immensely.

Later in my 20s, I was working part time and needed to get health insurance, since I didn't have any through my job. I was denied insurance because I had once been diagnosed with major depression -- even though I was as healthy as could be, with no medical conditions, no surgeries, not overweight, etc. Despite my physical health, I was uninsurable.

Later in my mid 30s I was denied life insurance. Why? Because I was once diagnosed with depression requiring medication.

I have many of the same fears as others here -- an assessor won't recognize Asperger's in a woman, the learned skills mask it well enough, general lack of knowledge about Asperger's in women, etc. (The testing Valkyrie2012 discussed on page 1 sounds pretty in-depth and accurate, but it seems from these posts that's not how all assessments go.)

But I also wonder about the effect the diagnosis could have. Would it be the same as the depression diagnosis? Will it affect life insurance (Aspies are more likely to get depressed, etc.)? Could it affect car insurance (easily overwhelmed, distracted, etc.)? What if my employer found out -- would the ignorant people at work assume I'm "ret*d" or Rain Man? What if the word got out to the clients I work with; would they not want to hire me anymore? And worse -- what if I were to get diagnosed with something else I don't think is accurate but has negative consequences?

There are too many unknowns. And I don't really see a benefit.

For now I am comfortable with my own informal diagnosis, which I can use to understand the "meltdowns," the sensory issues, the special interests, the mental exhaustion from wearing a mask day after day. If the only benefit is personal understanding, I don't feel like I need someone else to tell me what I already know. Or worse, deny what I already know! So no diagnosis for me….for now.