Is an official diagnosis worth the effort? + My story

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My answer is no, because I'm not going to disagree with the testimony of your family and friends like so many always do on here. They might be right, they might be wrong.

I've heard people without autism say that as well.

It was definitely worth it for me, for a lot of the reasons you cited. It's frustrating enough to have to live with autism, and struggle to interact with people, without also having friends and family tell you you're just "not trying hard enough", and that you don't have a legitimate reason for struggling as much as you do.

Before I was diagnosed, there was always this little part of me that wondered if maybe they were right, and I'm just weak, and stupid, and it's my own fault that I can't ever figure out how to interact with people, or form meaningful relationships (among other things).

But now, I know that it's not my fault that I struggle with these things. That no matter how hard I try, social interactions always feel hopelessly awkward and confusing to me. And that I truly do suffer from auditory overstimulation, and I'm not just being difficult. I accept and embrace the fact that it's my nature to obsess over special interests, and it's okay to be the way that I am.

So if there's any way you can afford the testing, I would say it's worth it. Getting an official diagnosis made an impression on my friends and family members who thought I was just making it up (to be a special snowflake or something?) – but they believe me now. Definitely worth it for me

It's the same for me...I work in sales too. I can do the job well and even enjoy it in some ways but it takes a lot out of me. The upside is I work independently so I don't have to socialize much with co-workers. But anything unexpected that deviates from the usual "script" takes a lot of effort and it is really draining.

It takes so much out of me, I feel like I don't have much left over for the rest of my life. It's not just a matter of coming home from work exhausted, it's more pervasive than that. I have days when I actually don't feel so tired, but I don't really feel like myself either. It's like I am so used to wearing that mask, it's hard to take it off.

When I first started my job, I thought it was just "me" having a problem with it, but later I found out other people in my position have some of the same problems that I have. And some of them also come home from work so exhausted that they just fall asleep. BUT the difference is those people also have families, partners, children, friends, social activities, hobbies, etc. They come home exhausted too, but they are able to recharge themselves and still do other things. Whereas I feel like I have to conserve most of my energy just to do my job.

I am not sure if having an easier job, or no job at all would make any difference. Maybe those other aspects of life would just be hard for me no matter what kind of job I have.

I am not interested in getting any kind of therapy. The only benefit I see to having an official diagnosis, is the ability to get vocational assistance and/or apply for disability. For now I am still able to work, and I don't think that having another diagnostic label would help me find a better job.

Getting an official ADHD diagnosis didn't do much for me. I self-diagnosed first and was officially diagnosed with ADHD about 6 months later, shortly after I started college. I thought having a diagnosis would finally make things easier in school. But it didn't help at all.

After I quit college, at one point I went to vocational rehab to try to get some help with job placement. The counselor there dismissed my ADHD diagnosis and tried to tell me he thought I was just depressed and needed medication. Now the irony of this, is it was the vocational rehab dept. who helped me get the diagnosis in the first place, because it was not covered by my parents' insurance. And their office had referred me to a psychologist who specialized in ADHD, to make sure I got the correct diagnosis. BUT when I came back to vocational rehab for help finding a job, they were dismissive of my diagnosis.

The various employers I told were also very dismissive of it so eventually I stopped bringing it up at all. In my experience, if people are willing to understand me and work with me, they don't need to know what I have been diagnosed with to do it. And mentioning a diagnosis to someone who is already incapable of or unwilling to understand me does not help, if anything, it makes the situation worse.

If it is difficult for an employer to understand what it means for me to have ADHD, and most react negatively to it, I can only imagine how much more problematic it would be for me to say I am autistic.

I have told most people I know, outside of work, that I think I am probably autistic, and no one really gets it. People didn't understand when I said I have ADHD either. In my experience, making the diagnosis official doesn't make much difference in how other people understand me or help me. If anything, it tends to make things worse instead of better.

Also, the potential for misdiagnosis and the consequences that can bring is scary. I would not seek a diagnosis at all unless I knew I could go to someone who has an excellent understanding of how autism presents in women.

All in all I don't see any benefit to getting an official diagnosis at this time. I think it depends a lot on where you live and what kind of help is available, and what the general attitudes about autism are like in your area. Where I live, things are behind the times and people are ignorant.

Well said, I agree.

I'm fairly dubious too about the real benefits of a diagnosis regarding your job. If you are high functioning enough your only chance is to blend in as much as you can. It doesn't mean that you have to be a perfect example of a so called NT, but as long as you're among them, you have to conform to their communication style and the way they do things. This is most efficiently done if you don't cling to your diagnosis too much. This is why I suggested a more general view of being a highly introverted person rather than someone with autism or ASD. It allows you more space mentally, and makes it easier to sympathize with like-minded people, even if your difficulties may be a little bit more pronounced or impairing.

To say something pro diagnosis, I can imagine that in some cases autistic people at the highest functioning part of the spectrum can use their diagnosis to get a supported job, if it's necessary, for example due to economic changes. In my case, during my unemployment I was offered a job at HAS, the sister organization of NAS in Hungary, which I didn't take, but was pleased with.

Last edited by OJani on 26 Dec 2013, 1:49 pm, edited 1 time in total.

Personally, I'd recommend getting a diagnosis. I had a diagnosis about 4 months ago, and while it hasn't altered what I do, knowing I have autism does put some things from my long ago childhood into perspective. I can't see any reason why it wouldn't be a good thing to find out more about yourself. Plus you might be able to tap into some coping strategies which you currently may not be sure could apply to you of until you are certain of your diagnosis. All the best whatever you decide.

I sincerely appreciate all of your responses! There are several replies I wanted to quote and respond to but my post would be a novel long! I'm still undecided about my diagnosis but from what I gather from your experiences telling people about it is not the best idea. I may still go for a diagnosis for my own peace of mind, and additional coping skills, but I think I may drop the subject with friends and family (except a future partner) and keep it to myself and online.

I really like what was said about YOU being the person responsible for your own life. Very well said OJani.

The fact is I am sure I have Aspergers. It explains my entire life up until now. Why I've struggled as much as I have and why I see the world the way I do. It explains why I can't connect with people, understand the workings and flow of conversation, when someone is joking or being sarcastic (Whom I am not extremely close to). It explains why I have extreme anxiety with eye contact, why my speech is rigid and off beat, why I always feel awkward with my posture and attempt at gestures. Why I can't tell stories properly or talk about myself but I can share and speak for hours about a topic I am interested in.

It explains why I am very sensitive to light (Especially fluorescents), Why I zone out all the time from over stimulation, why I can play 1 game for months at a time and not get bored, why I'm fascinated with birth-dates and years (Finding out someones age and when they were born is one of my 1st questions, every movie I like or see I know the exact year it was released and the age of the actors in it). It explains why I organize everything into proper order and why I stack things where ever I am.
It explains why I connect more with animals, children and older people then I do of my age group.

These are all things that have always been apart of my life but I am only now understanding it all. And I feel great relief in the fact that I am not alone, that there are others like me. It's satisfying to me that the reason I don't fit in and don't understand the social world is because of Aspergers and not because I am damaged.

But like a few of you said, I am not going to let that be my excuse to give up. I am lucky enough to be of the very high-functioning end of the spectrum and although I have a lot of challenges, I am able to blend in (Though awkwardly and not without extreme effort) with the NT world. And it seems to be the general consensus that that is the best thing for a normal life. I want to be a successful and happy person in life and I believe finally learning about myself in this way will help me greatly.

I think for me the first thing I need to do is change my career to something more suitable, as the social aspect drains me completely. So much so that I don't have energy for anything else, never mind other social relationships. I also find that half the day I am in a daze and only now am I learning it's probably over stimulation.

You do sound like you have Asperger's syndrome. Go for the diagnosis. I'm usually very strict on how I view the criteria of autism/AS, this is because of being told that what I go through is normal. I need to really set a line between normal quirky behaviour and having symptoms impair you enough to be diagnosed with an autism spectrum disorder. That goes for mental illness and ADHD too. It's just what I have to do.

I know how much a diagnosis helped me. It decreased my social anxiety, simply because I turned off from being like people and didn't hide any of my symptoms. Then I wanted to be social again and the anxiety came back, but it's good to know I can turn away from people, focus my mind on my quiet autistic world and start feeling ok about myself again.

Being diagnosed and coming to a place like this after the holiday season gives a real boost to my self-confidence. It's like I need it to feel ok about myself for being so different. I think I've overdone the social thing lately that I've got little energy left for my special interests.

Oh yes, I got diagnosed because I was confused why I couldn't get a job after the job interview and why I seem to have no idea how talk to people. I actually became really curious to know more things after my diagnoses and became interested in science, especially famous scientists in history. I got to see what other people with AS were like and some seemed quite smart and I wanted to see if that could be me too. My diagnosis got me on the disability pension which took so much stress off my shoulders about having to find jobs.

I'm glad you say it yourself. My only caveat for you would be that find realistic goals: your way of being "normal". I guess you've already turned in the right direction.