when your diagnosis gets questioned

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I was diagnosed with moderate/severe Aspergers in 2012. It was pretty monumental for me, and I attended groups for a couple of years. It was like I found my people. I was really, really sure that the diagnosis was accurate. It made sense.

But I also have bipolar I disorder and every time I am hospitalized for that, the staff psychiatrists see the Aspergers report and tell me "there's no way". I'm "too socially competent" or my interests are "too broad". A specialist in diagnosing adults on the spectrum diagnosed me, and I just dug out the diagnostic report and read it again.

I believe it, I really do. I'm not exactly the same - I'm more social now, not necessarily more capable but I put myself out there. Then again, compared to me when I was younger I'm much more social, but compare me to "normal" people and I look like an antisocial recluse. I generally get along with people but have no idea how to foster lasting friendships. My peer group shifts with whatever I'm doing at the time, and once I move on, I rarely keep in touch. I think my longest current friendship is 3 years, and even then, it's not like the friendships I see. It seems much more shallow.

Even my own psychiatrist doesn't believe the diagnosis - in my defense, it's not her specialty, and she's the one who referred me to the specialist because at the time she agreed I seemed to match the diagnosis, but as the years have gone by and I've grown into who I am, she's stopped listing it among my diagnoses.

I've stopped identifying publicly as someone with Aspergers, because it's just so daunting to defend the diagnosis to everyone. I just got a new GP/family doctor, and I'm debating bringing her the autism diagnostic report. She would likely communicate with my psychiatrist, and I'll have to fight to have my diagnosis recognized all over again.

Maybe it's not the right time. Maybe I just wait or even get tested again if I can ever afford it.

Sometimes I don't even know what I believe.

The DSM 5 has been written to take into account current thinking that symptoms may be masked, provided they were there by history. This means that people who have dropped from Level 1 (often but not always where DSM IV Aspergers would sit) to Level 0 should still have the diagnosis.

ASD is now considered a lifelong disability.

I would take the report to your new doctor as it's important they have a complete medical history.

I'm sorry you're having these difficulties.

I am under the impression that the "history" of a person with autism was always taken into account.

Though this is probably more explicitly expressed within the DSM-V

I have a history of classic autism as a very young child, and an Asperger's-type presentation ever since. Under the DSM-IV, I would have been diagnosed with classic autism, rather than Asperger's, because of my severe speech delay.

I have adjusted fairly well to the "wider world." I still have an autistic sort of mindset, though. And I still exhibit some symptoms at times, especially when under a good deal of stress.

The key, really, is to not let any diagnosis define you. You are a person--not an Asperger, nor a Bipolar, or whatever.

This would bother me a lot. You are functioning very well right now, doesn't mean you lose the diagnosis. Furthermore, she knows that what she is doing is her putting her own 2 cents in there about what she feels is best for you as, has been pointed out, she's ignoring the diagnostic criteria. She probably feels like you will do better in life not having the label or something.

I suppose if you really didn't want the label you can drop it right now. It's almost like you've been given the opportunity to do so. But has having the label known to medical professionals been bad for you? Or has it been beneficial?
And then there's a chance you could fall back into lower functioning in times of stress in the future. If you would not have that label, you would be missing out on the right sort of help. If it were me I would also consider that if you have been diagnosed with it, then drop the label, you are not accurately representing to the world what aspergers looks like, you're removing you from it. Like, if everyone thought and acted the way you did, then everyone would think that people who aren't obviously disabled can't have aspergers. I would say that in fact, both you and your psychiatrist are doing that right now, you're both thinking 'He does not fit my perception of what someone with aspergers is like, therefore he doesn't have aspergers'.

I'm going through the same. Have to spend a lot on a re-diagnosis now. Not much I can do about it sadly.

Another moderate to severe aspie yay

If you agree with the expert who diagnosed you don't you dare let anybody less qualified revaluate you.

There is still a belief that autistic people are not sociable and have no interest in other people. There is still a belief that autistic people can only have very limited interests, not have a lot. Even some people on the spectrum have these thoughts so they wouldn't even think they could possibly be on the spectrum for these reasons.

Unfortunately we are still in the position where we may have to educate even health professionals about autism. It has years of stigma and stereotypes associated with it

I do agree with the expert who diagnosed me, and as I look back on my life I'd say more people actually agree with the diagnosis than disagree.

I think the only reason I wasn't diagnosed as a child was that A) I was a girl (I'm transgender, am now a guy) and B) It was the early 80's so autism was seen much differently. They put me in gifted classes and chalked any social difficulties up to just being smart.

My current psychiatrist never actually SAID that the diagnosis was invalid, she just eventually stopped including it in the diagnosis reports she sent to the disability services at my university. I did receive accommodations for ASD while I was at university because I had the diagnostic report from the expert. I also saw the head of counselling while I was there, who definitely agreed with the diagnosis.

It seems like medical professionals who only deal with me on a surface level tend to not see the diagnosis, but when someone looks a little deeper, they immediately see it. Even my current psychiatrist said at one point that I seemed like I met the criteria for diagnosis, especially as a child, which is why she deferred to the expert in the first place.

I'd really like to start including the ASD report in materials sent to new doctors I see - like my current GP and the anxiety treatment services I'm about to begin assessment for - but I guess I'll have to become ok with possibly causing waves with my psychiatrist.

Yes, I have this issue. My psychologist gets irritated because my general practitioner doesn't "see" the autism. Based on what you wrote, it seems we have similar circumstances. A person may or may not "see" my autism based on how long their encounter with me is. I can act completely normal for short periods of time (mostly be being quiet and agreeable)... hence the confusion. Spend any lengthy amount of time with me though (which my GP does not do) and it becomes quite obvious. It can definitely mess with your mind but just realize these people are only getting a brief snapshot of who you really are. You know who you are and what is really going on... don't let uninformed people pollute your thoughts.

I have perfected my "Scripts" over time, which was really helped along by an intense interest in theatre. I can seem very personable especially in medical appointments because it's the same script over and over again, but catch me outside of my script and you'll see a very different side of me.

Comfort for you:

ASD is something you are born with, it isn't something you can grow out of. Like Diabetes, it is something you can learn to manage, to cope with, to shape your life around. But it doesn't disappear. If you qualified to be diagnosed, you are still Autistic.

Is there a way to gently remind your various doctors that they shouldn't advise on something in which they do not specialize? After all, they wouldn't give a consult for obstetrics or oncology. They work in Psych, which is varied, and complicated.

Not that you want to 'keep' literature with you, but can you perhaps bookmark the various articles on diagnosing girls/women on the spectrum (even being transgendered, it would have applied to you as a child from what I'm reading, and your doctors would be aware of your transgender status). Also, most adults that have learned to 'pass' tend to food others in thinking they are NT. It isn't unusual, it isn't rare. I'm going through a similar struggle as you now (same problems as a kid: gifted classes, etc. I had the side benefit of a.. uh... non-nurturing upbringing as well to excuse my freakishness.

Rosie King gives a fascinating Ted Talk on how, when autistic, the compliment of "Wow, you're so NORMAL" is not actually as positive as people think it is. It may help you realize you aren't alone in this type of situation.
Rosie King Ted Talk: How Autism Freed Me To Be Myself

That was a good TED talk. Thanks for sharing it.

Yes, I had a "non-nurturing" upbringing as well, and even thought myself that maybe that was why I was so different, and I even brought that to the specialist who diagnosed me and asked him, and it was his opinion that it was autism.

I guess my own opinion is, I've been free of that non-nurturing place for 13 years, have done therapy and have re-nurtured myself, become who I am, accepted who I am.... and I still meet enough of the criteria. I'm still autistic.

I'm very tempted to post that talk on Facebook and see what happens. I used to be more vocal about my experiences with autism on facebook, even had a blog. Heck, I was even performing in a theatre production at the time for all incoming first year students at my university, and performed a monologue about my personal experiences of being an autistic university student for thousands of people and got a great response. The couple of close friends I had at the time knew about the diagnosis, accepted it, and I could always talk to them about certain challenges.

And then medical professionals who had rather stereotypical views started questioning the diagnosis, which led to me questioning it, which led to me shutting up about it, which led to a lot of beating myself up for not being able to fit into the "normal" box.

I guess I'm afraid of giving myself a "free pass" to isolate myself, because isolating is certainly an easy thing to do - I do a lot of things like avoid large parties, always have. My high school friends bought me a ticket to my high school prom thinking they were doing a nice thing and afterwards were angry with me because I was miserable the entire time. That made me upset because I had never wanted to go in the first place, and certainly never asked for a ticket. I tried to pretend I was having a good time to appease them but that didn't work.

I'm lucky that the few friends I have now seem to realize that avoiding most social gatherings is just something that I do, and that it's not personal, and I don't hate people. Maybe we're not hanging out as much as other people, but they're true friends and don't mind socializing on my own terms. Sometimes I lose someone because their social needs are incompatible with mine, and that sucks, but there's not much I can do about it. I can tell that the friendships I have seem different than what I see from everyone else's friendships. I can't describe the difference, but I see it. Other than a couple of close friends, I don't really need to connect deeply with everyone. I don't even have much of a desire to date or marry. Maybe I never will. But I'm getting to a place where I know that's how I operate. I recognize that I operate differently, and that's okay.

I've come across this with many doctors - not so much the one I like to see, who is very understanding - but temporary locums can be terrible. I now have a stock response that I use...

- My evaluation took place at a specialist Neurological Development unit.
- It took place over five, two-hour long sessions.
- Plus another hour interviewing my Mum.
- They immediately referred me to an occupational therapist specialising in sensory issues and ADD because of concerns about my sensory sensitivities and executive functioning.
- My diagnosis was recorded onto my medical records together with some supporting information (I've never yet met a locum who actually bothered to read my records first!)
- I have a 20 page evaluation report which I would be more than happy to e-mail you.
- I came here for help with [reason for visit], not for a diagnosis of my innate traits - I already have one, thankyou.
- I can continue if you wish, but telling you this has already wasted two minutes of our ten minute appointment.

Quite effectively, so far!

I have been out of my non-nurturing environment for only 4 1/2 years, via restraining order (more or less, long story). Most of my 'symptoms' came out after this. Then again, since it was my father who created thousands of 'rules' to govern our lives, that is probably not so surprising.

I'm active in posting things on Facebook, but I'm also friends with a large group of people who are 'touched' by autism in some way. Either they are on the spectrum, their children are, or their spouse is, or any combination of the above. Most of my friends (also belonging to that group), know of my evaluation and self-diagnosis (they all agree with it). Those who don't know, I don't care about. They will think whatever they want, but part of the process of self discovery has led me to truly eschewing concern about the opinions of those who don't truly care about me or my family, and who are not affected BY my belief.

As far as isolating yourself, can you find a happy medium (<that's a mixed image), and perhaps find time to do things with people in smaller groups in more sedate arenas verses the loud, overwhelming atmosphere's? I'm lucky where most of my friends avoid similar situations. We are all of us birds of a feather in many respects.

Ah, I seek connection if only as a basis for validation and/or confirmation that I am operating in an accepted fashion. (Ok, and because my family is insane, and without someone's outside perspective, my head would implode.)

I have always told friends that are NT that, when facing a decision, decide if YOU are ok with it. Not if other people will approve of it. Do you, right now, in this place, agree with the decision you are making? Will you be able to sleep at night with committing to it? Then let your decision stand. The good thing about many of life's decisions is that few are permanent or so concrete that they can not be changed later on. You could well wake up one day, decide you want marriage, family, etc, and that would be fine as well. You could also be a confirmed bachelor, and that would be ok as well.

As the song goes, "If it makes you happy, it can't be that bad". (excepting illegal desires, of course).



PS:Troggludite's answer is amazing. If mine goes through, I will use something similar.

I think being introverted and preferring solitude is a perfectly valid life choice - autistic or not - and it's no one's business what you do in your free time. Yes, we all need to try to be as functional as possible, in terms of working and taking care of ourselves to the best of our ability, but I see socializing as a 'hobby', and I happen to prefer solitary hobbies. We shouldn't need an excuse (such as autism) to defend a lifestyle choice that doesn't hurt anyone, and makes us happy.