Diagnosis and other people

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Hi Ya,

As i mentioned it has taken almost a year but i finally have my diagnosis. What i wanted to ask is do you tell other people about your diagnosis or feel ashamed of it?

I had a generalized anxiety disorder diagnosis and i didnt care who knew to raise awareness for mental illness. I mean I didnt go shouting it only if something came up. The weird thing is now I am an Aspie I actually feel ashamed and dont want anyone to know. Anyone else felt like this?

How did you get over it ?

I realized it didn't change who I was. That I was the same person I was the day before I found out for sure. The only thing it changed was how I view my struggles. I no longer see them as deficits, but as challenges/gifts. Stubborn became tenacious, fixated became focused and driven, etc. Finding the positives helps a lot to change your opinion.

That and remember the stereotypes you had in your head before your diagnosis (whether good or bad) play a role in how you see yourself now. Change those stereotypes and the feelings around them and you will change the outlook you have now that you have a diagnosis.

Initially I wished that everyone in my life would magically know about my diagnosis (without me telling them, because that would be awkward and scary) – and that they would have an informed understanding of what autism actually is, so that they would understand what I'm going through, and how I need to be treated.

But the reality is, I don't have the communication skills to even tell them, much less explain to them what it really means, and clear up their faulty assumptions and misunderstandings.

So I'm learning to just accept the fact that I'm not going to be understood by 99% of the people in my life, and that okay; it's just something I'm going to have to live with. Autism is difficult to fully understand – even for those of us who are obsessed with trying to understand it – so I can't really expect the average person that I barely know, to even come close to understanding me.

And I admit that I'm cynical, and that other people might have better interpersonal skills than I do, and more success in communicating with the various people in their life, and educating them about autism.

But for me... I'm giving myself permission to just not worry about what anyone else thinks of me, and to focus on finding happiness in my own way, even if my lifestyle is vastly different from most people's.

Good for you Ashariel. It is so important for you to find meaning and happiness for yourself regardless of what anyone else feels or thinks. That can be one of the most difficult things to do especially since we can sometimes have low self esteem but it is so great when you can do that. At the end of the day the only one you have to answer to is yourself.

I'm by no means ashamed of my autism, but I have had the experience of attempting to explain what it is and how it affects me, only to be dismissed with remarks like "Oh, that's normal, everybody experiences that."

No, "everybody" does not experience it, certainly not in the same way or to the same degree, else "everybody" would be handicapped in the same way that I am, and that is clearly not the case. Unfortunately, because of the very social communication, sensory and anxiety issues that constitute my disability, I am ill-equipped to argue the point or try to make a closed mind see what it wills not to see.

It leaves me feeling frustrated and humiliated, because these people are obviously implying that I'm just an excuse-making slacker, which is the very kind of abuse I endured for decades because I hadn't been diagnosed and had no explanation for why I couldn't live up to the world's expectations. Now that I have an explanation, that very disability leaves me no more capable of making others understand than I ever was.

For that reason, I rarely attempt to discuss or identify my disability and when it does come up, I simply call it "a form of autism" and leave it at that. So far, I don't think anyone has ever requested any further details. Truth is, they don't care.

I have children who have a diagnosis on the spectrum (2 Aspergers and 1 PDD(nos)) and I am confident I would recieve an ASD diagnosis. I have not yet. I would imagine I will not feel ashamed at all.

I was surprised however, when I would talk to certain people whom I thought would be supportive, and then they would jump right into a condescending attitude and start spouting off stuff about Aspergers and ASD being the new Fad, about how it is overdiagnosed, etc. and that all your kids need is more Love or more Discipline (depending on who is doing the talking) So at the time of talking to these people it can almost create a sense of shame -- but usually for me, before that can happen, all of it turns into anger.

So I am very selective about with whom I talk to about the subject.

I felt great joy and relief in knowing there was an explanation for why things happened they way they did. That explanation was that I have been an Aspie my whole life and so have you. We just did not know about it.

As you post here will read about a traits and experiences that happened to other people that you have always thought only happened to you. You will find out how they are related to Aspergers. Some of these traits and experience will be good ones. That might help you get over the embarrassment and shame you feel now.

As far as Disclosure there is no clear cut answer. Some people will treat you differently both in good ways and more often then not in bad ways. It is hard to explain to people. A lot of people do not know about Aspergers and if they have heard about it they think of the socially awkward geek stereotype. With autism they think of the "Rain Man" character.

I am ashamed of my diagnosis and won't tell anyone about it. I was diagnosed 5 years ago. My parents tell everyone, though, and I'm quite obvious.

I hear and feel the frustration in regards to that.