Just diagnosed and feeling confused

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Hi and a very warm welcome to you, Su . I found that sharing and giving support etc on autism forums, creating a blog, and getting involved in the online community, becoming an advocate, really kept me afloat. I’ve made some amazing friends this way, even meeting some in person. Some men(husbands included) don’t want to hear it mentioned, even some who are on the spectrum themselves, as they might not share your positive view of autism. I’ve found knowledge and understanding of it empowering and incredibly life changing.

We all hope for an existence that’s happy, where we feel loved, confident, and able to live a fulfilling life. Having autism does not destroy those potentials; it only alters their course. It changes how things must be accomplished. It creates a fascinating, complex individual who stands out and is remembered, even for little things. Instead of trying to push a “normal” life upon a person with Autism, the goal should be re-evaluated. Those who are autistic will always be autistic. They will have unusual behaviors and distinctly different thought patterns. They will have their personal routines and rituals. They will always exist apart from the regular flow of life. This is a blessing and a type of freedom. Hope you can go on from here, learning as you go and helping others along the way.

Hi Sue.

I was diagnosed three years ago and while it was amazing to suddenly have this answer (I really had not been sure) the relief became disappointment.

The high lasted the two weeks between getting the answer and the counselling session that was to begin dealing with all the details. The session was someone explaining that they don't have anyone trained in autism so there was nothing they could do and since I had filled out the 'how suicidal have you been during the last two weeks' form ok I was fine anyway and 'why didn't start a group for local Aspies'.

In other words, I look normal so I must be VERY mildly Asperger. To this day I am the only person who has read my assessment and that is a huge disappointment however I am much happier now thanks to all the interaction online with others on the spectrum.

Also I have let go of any expectation of things being different with other people. Parents are adjusting slowly and I am adjusting to hiding my real self less. Work don't know, they are nice, but I think it encourages people to doubt me, and it's a small town so once it's out, it's out.

I had some bad experiences with doctors post diagnosis (worse than previously) to the point that I regret them knowing. I also had very good experiences with the local job centre which was a surprise. Don't feel bad if you tell someone and they give little or no reaction. The other thing to be wary of is hearing negative comments by parents of people on the spectrum about autism and especially Asperger's.

It's quite normal (for us weirdoes) to crash post diagnosis so be nice to yourself, you don't have to struggle to be, or appear to be, a happy bunny all the time. Feel free to lay on the floor and wallow in misery for hours whenever you like; you've basically been diagnosed as an antisocial, miserable, self-centred, bugger, so enjoy it.

Thank you all for your encouragement! I wasn't expecting so many replies!

I asked my husband to watch a documentary about autism with me, which he did, and I've given him my report to read. He was there for my assessment and the psychologist interviewed him about me too, so he does accept that I'm autistic. I just think it will take him some time to get how my outlook on life and identity has changed now.

I plan to tell my parents at some point (I didn't need to involve them in my assessment, fortunately), although at this stage I have no idea how to approach that. There's no rush though, I guess.

These days I'm continuing to learn about autism, and to practice being kind to myself. In time I hope to become a bit more assertive and put my own needs first rather than always trying to make others feel comfortable, which I think I've spent most of my life doing!

Su

Welcome to Wrong Planet, Su. I am also new to WP and was diagnosed less than a year ago but I’ll still offer a few thoughts that might be completely useless and likely will be long-winded and boring.

First, though, congratulations on the diagnosis! It seems to me the main thing it changes about you is your understanding of yourself. Isn’t knowledge a good thing?

There is a lot of interesting autism info on the Internet. I especially like the humorous stuff from within the autism community--it can amuse me while it gives me insights. It is often mentioned that every autistic is different (just as every person is different) so you have to decide what applies to you, what does not apply to you, and what is complete rubbish.

A high priority for me was to tell my medical providers. As I age I see them more frequently and I am often frustrated and aggravated by them. My bride often comes with me because (a) I am very good at forgetting stuff and the doctors are very bad at writing stuff, and (b) she wants to be there in case we need a referee. I have found https://aaspire.org and https://autismandhealth.org. I am hoping to use them to improve communication with my medical providers; so far, no luck.

With regard to your husband... Maybe you can get him to look for interesting autism info on the Internet. You might mention that the autism diagnosis doesn’t change you and you’ll still be the same wonderful gal with the same annoying quirks but now some of the quirks have pedigrees. You could also promise to keep on annoying him and driving him crazy. (And maybe see if you can persuade him that now that you have autism he’ll have to wear a pink rabbit suit around the house, but be prepared to negotiate that down a bit.)

Two cautions:

1. As you learn about autism you will discover it might be why some things bother you or are difficult for you and why that is unlikely to change. When that happens to me I often tell my bride "I have a doctor’s note for that!" She is not as amused by that as I am.

2. After I concluded for myself that I was probably a "High Functioning Autistic" I wondered if there were any famous autistics. I went to the Internet to find out. BIG MISTAKE! ! My ego still has bruises.

Gee. That is probably long-winded enough. Welcome to WP, the locals seem nice, and take care!

Another welcome to Wrong Planet.

It is quite normal for a newly diagnosed autistic person to feel a wide range of conflicting emotions. It can be quite a shock to find out you are one thing when you thought you were something else. The temptation is to want to control or dismiss these feelings as they can be too intense. But one should not fight these feelings as they are your autistic brain processing this information the way it needs to do it. As for your husband sometimes people feel people use the Autism label as a crutch, or he himself is having a hard time with this new information, or maybe you are misreading him. That is something you two need to discuss.

I'm not diagnosed but I know I've felt depressed about it. I feel like so many years of my life were robbed from me. The whole, never being able to make friends, being socially isolated, social blunders, and the feeling of worthlessness.

I think if I had been diagnosed when I was a child, it may have made things easier or at least would of made life a little easier. I still sort of resent the fact that, my parents couldn't put 2+2 together and pull me out of JR High, when I was horribly bullied and even hazed. Maybe, I would of been helped out in a civil way instead of getting constantly yelled at, at times not even knowing why " Don't give me that, you know" or get accused of being a smart ass, kinda thing.

Who knows? maybe nothing would be different.