What are the implications of an autism diagnosis as an adult?

[Gryphacus]

Hi all,

This is my first post. I'm 24 years old and I strongly believe that I fall on the spectrum. It has been a surreal experience reading page after page of informational sites and blogs, like reading pages out of my own life. I've been living with recurring episodes of near incapacitation from work, chores, socialization. Thankfully, my work is independently contracted so as long as I get it done they're happy. So many facets of my childhood and my life line up that it's hard not to cry as I read about them. I was hoping to see a psychiatrist to get a clear screening, but a family member essentially warned me not to by saying something along the lines of, "Big Brother is watching," then saying that I "wouldn't want that tag to hang over [my] head permanently." I don't want to believe that they're right without someone else's feedback. What are the implications of an autism (aspergers/PDA) diagnosis in the USA, Arizona specifically? Would it have any effect on my insurance rates, or employment, or any other social system?

Any and all feedback would be appreciated. Should I not see a psychiatrist? While I'm overwhelmingly convinced in self-diagnosis that I fall on the spectrum, I somehow feel that a medical diagnosis dispels any facsimile of my doubt.

Thanks,
G

 

[Cazelle]

Hi and welcome, Gryphacus. I can't help you with your questions, sorry, as I am not in America. Hopefully someone will know though.

 

[Autistamatic]

Hi @Gryphacus and welcome. The video below is aimed at helping people who are just diagnosed and considering disclosure by looking at pros and cons. It might be useful to you too. There is a follow up video as well which talks more about feelings after diagnosis.

 

[Suzanne]

A relief. A sense of panic and bewilderment, because no matter how I try, I cannot be like others.

Just had two strangers looking after our home, whilst we were away for 4 days and I would really have liked them to not be at our home, when we got back, but they were and I felt very ill at ease, to the extent of over talking and got told to calm down, which just embarrassed me further.

As soon as they went, I felt myself breathing normally.

That is a daily battle, when I have to speak to people and knowing that it is how I am, is pretty demoralising, in truth.

On the other side though, it has made it easier for me to talk about it to others. Because I have that formal diagnosis, I can say I am on the spectrum with confidence, whereas before, it was very hard for me to battle any negativity.

By the way: I was diagnosed this year, at 49.

 

[Wolfnox]

Eh no change for me. I always knew something was up. They just gave it a name.

 

[Gryphacus]

Thanks for your replies. I suppose part of me feels terrified, worried about what it means and questioning myself as a person. Have my relationships been fakes? It doesn’t feel like I’m faking a smile when someone tells me a joke or does something nice for me. Part of me is also liberated. This explains so much about me, so much I was self consciously trying to hide from other people because I know it’s not normal. But if it’s a part of my very being, there’s no course of action but to embrace it, right?

I’ve had an inkling that I was on the spectrum for many years now, alternating between that and ADHD/OCD or bipolar disorder. I had autistic friends who I was able to get closer to than anyone else. In fact, my best friend of 12 years, the guy I consider my brother and who I’ve been living with for three years now - I’m almost certain he has Aspergers as well, and that’s why we get along so well. We rarely have trouble communicating with each other (vs. with other people) and we share a huge number of idiosyncrasies.

My primary question still stands though, I’m really worried about getting a diagnosis if it means I’m going to be treated differently, or if my insurance premiums will rise, or if there’s some other negative implication. I want help for the very not-so-fun parts of the condition. The debilitating social anxiety. The days where it’s just impossible to move. The deep pits of bad mood swings where I feel like an observer looking out from behind an angry mask. I can pass for a normal person since I usually keep to myself, but if my job becomes more demanding or if something changes, I don’t know what I would do. I know I need help for these things and I’m not sure if there’s any way besides the formal diagnosis.

 

[Wolfnox]

First music helps with the mood swings as does comedy or at leat in my case it does. Second its been my experience that most of the help is from yourself. That said get diagnosised anyway and if your worried about the impact on your life. Remeber two things. You dont have to tell anyone you dont want to. And finding you do have it. Doesn't change who you are. It just gives another part of you a name.

 

[Michael Balog]

You don’t have to report it if you don’t want to have your work know. Its self reporting and I don’t tell anyone I don’t fully trust at work.

 

[Peter Morrison]

I have always felt that a patient always knows themselves better than any doctor. We might not know what is causing us difficulty, but we know what the difficulty does to us. Gryphacus, you seem to be where of what challenges you, so make sure you learn how to give yourself the stressless moments to compensate for the upset. I'm undiagnosed, and I would benefit from an official diagnosis for my own piece of mind. The effects of Aspergers are always with me, and I get better and better at recognizing them just by being myself. I know I am guided by ASD, but there is nothing I can do about it. I only know to remain aware to avoid difficult or unpleasant environmental conditions when I can. The more I understand, the better I become at bringing order and contentment into my life. I'm a happy person, so that might facilitate some of the situations that might normally cause me to feel put out or inconvenienced in some way. I have come to expect difficulties that fit a normal course of events, but I really can't tolerate bad planning or senseless diversion. I use my patience, but my patience is not a bottomless well. I adjust as I see fit. Strength is a virtue, but only if you use it when you need it. Never be afraid to test it. That's one way to confirm that your strength is real. In the meantime, make sure to be good to yourself on your own terms.

 

[Gryphacus]

Forgive me for needing clarification, but I don’t really understand the scope of self-reporting. I do get that employers and other people are on a need-to-know basis, but:

- If I get clinically diagnosed, does that information go on my medical record?

- Can my insurance company or the government see that I’ve received a positive diagnosis without me choosing to disclose it?

I know I’m being a bit paranoid, and it’s absurd to me to think that the US government or the medical system would make people with developmental disorders pay more. But I’m not beyond believing it could happen.

 

[Crossbreed]

Should I not see a psychiatrist? While I'm overwhelmingly convinced in self-diagnosis that I fall on the spectrum, I somehow feel that a medical diagnosis dispels any facsimile of my doubt.

Autlanders, Thriving Outside of the Box: Finding Support Resources in the USA...

My primary question still stands though, I’m really worried about getting a diagnosis if it means I’m going to be treated differently,...

People, generally? No. They already know how you roll (and you don't have to tell anyone who might not take it correctly... ). A correct diagnosis, ASD or otherwise, will point you to which therapy is the most worthwhile. (What works for one may be contra-indicated for another diagnosis.)

As for insurance, it depends on the insurance.

Having muddled through all of these years, if you are on the spectrum, you are most likely ASD1. (ASD2/3s get discovered in elementary school because they have more obvious needs.)

 

[Crossbreed]

If I get clinically diagnosed, does that information go on my medical record?

Yes.

Can my insurance company... see that I’ve received a positive diagnosis without me choosing to disclose it?

Yes, for billing purposes, but they are bound by HIPAA.

Can... the government see that I’ve received a positive diagnosis without me choosing to disclose it?

No, not without a court-order.

 

[Gryphacus]

Crossbreed, thank you for the clear answer, and the resources. You are almost certainly correct as even I myself haven’t been able to put the pieces together until now.