Physical Symptoms

Have you discussed this with a doctor or other healthcare professional that knows about autism? You don't say anything about your age or financial/insurance status. I believe it is quite possible that you are on the spectrum. However, without trying to stir up the debate over formally diagnosed/self-diagnosed, from what I understand, seeking a diagnosis can be time-consuming and expensive.

Getting a diagnosis for ASD is not like popping into the doctor's office and getting an answer in 15 minutes--yes, it's measles, Yes, it's diabetes. Yes, it's (whatever). The diagnostic criteria are subject to change (look what happened recently to Aspergers). I have no doubt now that if I had a child who displayed the same symptoms I did as a child, that child would be diagnosed as being on the spectrum. That apparently was not on the radar in my part of the country 50 years ago. In fact, I just found out that the "diagnosis" I thought I had received back then was no such thing. It was just a label made up on a child who was obviously different and had behavior issues. That "non-diagnosis" had a tremendous negative impact on my life.

It was not until I discovered the writings of Dr. Oliver Sacks and Dr. Temple Grandin that things started to make sense. My primary care physician, a nurse-practitioner, believes that my self-assessment of being on the spectrum is correct. However, she can not make a formal diagnosis. Because of the expense and difficulty of getting a formal diagnosis in my area--travel, time, and money are three big hurdles--and because of my age (close to 60), I have not pursued the matter further. There is nothing a diagnosis can do for me except give some closure. There is no advantage I can gain from it and a good deal of disadvantage. And there is no guarantee, after going through all the tests, etc., that I will get the answer I am looking for. This seems to be a very subjective field. One doctor might say yes, you are on the spectrum, and another say no, you are not.

Your doctor, if knowledgeable about ASD issues, would be the best one to advise you how to proceed on this point. You also have to ask yourself, what do you want to gain from this knowledge? Resources for adults on the spectrum can range from scarce to non-existent. In the case of my "issue", whatever it was, I apparently "aged-out", because I was thrust back into the mainstream world without a word of explanation. The medications, the therapy, the special ed interventions, all abruptly stopped. I've had to struggle on my own ever since. I'm afraid that is the way things are for those of us on the higher-functioning end of the spectrum, especially those who came to the "discovery" of their possible ASD as adults. Meaning most of us won't qualify for any disability aid or status.

Spinning Compass,

First of all, I want to thank you for your response. I started writing some blog posts with the intention of starting a blog about ASD on another site. I have not told many friends and family members about this so I was going to blog anonymously. Then it dawned on me that it would make much more sense to blog on this website because there are others, with similar experiences, right here that could give me feedback.

I have struggled greatly with the decision to seek professional help. I will be 26 next week and am not covered by health insurance. I have read about the diagnosis process and understand how physically, mentally, and financially draining it can be. I also understand that a diagnosis could depend on which psychologist I end up with. At this point, attempting to be formally diagnosed just doesn't seem like a realistic choice. I've given it a lot of though and, honestly, a formal diagnosis wouldn't really even be for me. It would more be for the other people in my life. I feel as though I need it as 'proof' in case people think i'm ridiculous for even entertaining the idea that i'm autistic. I know that must seem really insecure.

Honestly, there are so many more symptoms and 'issues' than just what I posted in my three blog posts. I will continue to write and post more because I would love some more feedback.

I'm excited to read what Dr. Sacks and Dr. Grandin have written on the subject.

Again, thank you so much for the feedback.

You're welcome.

As far as needing "proof" to convince other people that you are on the spectrum, that can be a double-edged sword. You need to ask yourself why you feel the need to convince them. Also, are you aware of the possible consequences and are willing to live with them?

I made the mistake a while back of telling a co-worker, who I thought I trusted, that I thought that I was on the spectrum. She seemed--at the time--to be knowledgeable and sympathetic. Maybe, in retrospect, a little TOO knowledgeable. Because as time progressed, I found myself marginalized and pushed aside, micromanaged and talked down to, as if I were a slightly retarded child instead of a competent adult.

My telling her I was Aspie gave her the weapon, along with what she thought she knew about Aspergers (instead of asking me what my issues actually were, she assumed she knew what they were) to engage in these behaviors without much fear of retaliation or discipline. Other people, including the supervisor, repeatedly witnessed her actions and attitudes towards me without ever confronting her about them. She is getting transferred in a few weeks, however, which gives me some hope. How much worse things might have been had I had a formal diagnosis on record I do not know and do not wish to find out.

What I mean to say is by coming out of the closet to others you may risk losing your credibility and being taken seriously as a person. This is no small thing. There may be some battles you might have to fight in the future that depend very much upon you being taken seriously as a credible person. I am in the middle of one right now involving my housing situation and it is a real mess. It reads like something out of Kafka. Most people find it hard to believe that the situation I am describing is apparently legal; and if they were to find out that I have Asperger's, they would have a ready-made excuse for not believing my story. The reason I bring it up is you never know when you might be in such a situation where it is important that you come across as "normal" and not a "crank."

That gives me a lot to think about. I've been extremely fortunate so far. I've told my sister, her girlfriend, and my mother. They have all been extremely supportive. I know my family and friends will be accepting. It's co-workers that I worry about. I try not to be self-concious about things like that. It can be so hard not to care what people think. I think the biggest issue I run into is the fact that most people don't know much about autism. They automatically assume that everyone on the spectrum acts like rain man. People don't realize that there can be fully functional adults out there that are on the spectrum. I never knew until I suspected it was a part of me and started researching.

I'm so sorry to hear that your co-worker gave you so many problems. I'm sure it must have been very upsetting for you to have someone that you trust treat you that way.

It was indeed upsetting, but in a way I was not surprised. I've had a history of "friends" turning on me for no reason. Usually the excuse is that it is something I did or didn't do or something I said or didn't say. This time there was no explanation. When I asked her about it she said something about being betrayed (how?) and not wanting to talk about it. I was very hurt, and angry but now I have gotten over it and moved on. But I have learned an important lesson about getting close to people.

Do your friends and co-workers know that you are on the spectrum? Do they understand some of the symptoms?
It can be very difficult to socialize in some situations. We don't think like others and don't react like others either.
I know one of my biggest issues is that I need time to think things through before I react. When I am caught off guard in a certain situation i might respond in a really awkward way. People sometimes have a hard time understanding why this is.

This was someone who knew I was on the spectrum. This was someone who supposedly understood. That's what took me so off-guard.

That's awful. I'm sorry this person wasn't more understanding. Some people just don't stop and think about how their actions and words make others feel.