Self-diagnosis

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For me I spent years thinking about getting a diagnosis, I was just coming down on the side of not and deciding that being sure in myself that I was autistic was enough when my employer intervened and said that they required me to be assessed. Stressful at the time as I was worried what would happen if I got a diagnosis, but glad it happened now. I didn't realise how much of a relief it would be having someone diffinitivly say this is why you have always felt different.

Thank you.

I am so happy to hear the thoughts of people who went from being self diagnosed to being diagnosed.

I have a hard time imagining what would be better if I got a diagnosis. I don't know what kind of help I might get. I have a lot of fears. I am afraid I'd get shafted by the mommy state, have social services called to check out my parenting skills, maybe they'll come up with a job for me like putting matches in matchboxes or something. I read the blog of a guy with NVLD, that's exactly what happened to him. I worry that although I will have access to a psychologist it will be someone who doesn't understand and wants to push me to do things that are not good for me.

Right now I don't have any income, and no obligations, but at least I am not exhausted and distant, and I'm able to be a decent mom. The last time I worked, I found it difficult to switch from work mode to family mode in the evening. However, we don't have enough money, and I never get past the job interview phase, even though I have great references. Something has to change, which is why I've started the process. Now I can worry all next year.

On the other hand, I worry that I won't get a diagnosis. I'm not typical. I am outgoing, at times expressive. I think nice people who see me in a little room think I am warm and funny. They don't know what I am like in a crowd, don't see me lying awake at night, don't see all the stupid things I do because I can't keep track of several people simultaneously. They don't know that I've been taking voice lessons and teaching myself facial expressions in front of the mirror. They don't know how exhausted I am, because nothing shows. I always seem calm, even when I am shaking with fear. I don't know how people don't notice it. It's a mystery to me.

I think that can be the hard part--you've learned to mask and cope, but when seeing someone for a diagnosis you may have to forget some of that, because otherwise they'll be skeptical. When I first saw my therapist about a year ago, he agreed I had definite characteristics of Asperger's, but I was still masking a lot and not really realizing what was masking and what was me. I stopped seeing him for a while, and in that time was able to be myself more, so more traits showed. I also went back to him recently because of the sensory overload, so he could see I was really struggling. After seeing all that he was able to call me autistic. But, like me, you've probably had a life of coping for things few really see. I can relate entirely to seeming calm while being afraid. Each week I have a meeting with my coworkers and they tend to think I'm calm and bored, because we have to sit facing each other and that sitting formation with 7 other people makes me feel like I'm going to have a panic attack, so I frequently look away. But they don't notice my feeling of panic. People have always told me "nothing bothers you," even though inside it feels so intense. Annoying!

People always tend to think I'm funny, but don't realize that it was a skill I developed to try to keep people at a safe distance until I can get to know and understand them, and so I can feel some measure of control in a social situation I may find overwhelming. I guess our curse is being inexpressive with things we feel intensely, while most people express intensely their feelings that seem to be about nothing

I just try to remember that we all live in a yellow submarine.

This post made me cry. I've never met anyone who knew what this feels like.

Yes. It really is. Hope you enjoyed the job!

Hi B19,

You wrote:
"Here's a made up example DataB4: suppose that I decide to study whether autistic children like popcorn more than neurotypical children. I approach the research design in good faith, and I ask the local children's health clinic to select every tenth child from the last 500 autism diagnoses they have made, just say. For my comparison group of NT children, I select every tenth child from 500 children enrolled at a normal school, ruling out those who have ASD. Is that a good design? Many would say that it is.

"One big difficulty is the assumption error built into the general notion of the validity of comparing clinical samples with 'normal' samples in this way. One of the problems is that you don't know how normal either group really is. Are clinical samples of ASD children enrolled at a clinic different from ASD children who are not enrolled, and is the difference between THOSE two groups significant in itself? Likewise the "normal" children may be significantly not normal to the real norm (ie if we could measure everyone on a characteristic, which we can't) in a number of ways. Perhaps the school is in a particularly poor or wealthy area, for example.

"There are so many fish hooks. One thing that I would like to clarify in passing is that 'bias' in science usually doesn't refer to intentional bias on the researcher's part. Bias is considered to be faulty factors that result in findings that appear real though are not (artifacts)."

Good example, thanks for sharing. I see how even a simple example can have confounding variables and bias.

Thank you so much. The job is actually easy in some ways and very difficult in others. It made me giggle when you wrote about putting matches in match boxes because the job is assembly line product packaging for distribution. My first day, yesterday, I was on the line that puts individual Flonase bottles and their instruction booklets into their heat sealed plastic packages and then into the boxes to make the cases that the stores buy. We also make store displays for these products as well. I got this job through the Office of Vocational Rehabilitation and they were able to help me because of my diagnosis. I was also able to get diagnosed free through them. But they have all kinds of work, not just warehouse. I could choose to try any of the work that comes through their office as well as tying to get work on my own that they would help me get and keep. There were computer jobs and office jobs and work in all kinds of different fields. I choose to try this job because I liked the hours and I liked that this job would be very supportive of me to take the time that I need to be able to train for a specific Special Olympics event and that they are really supportive of Special Olympics. I had applied to other jobs where they told me that I would not be able to have the time to train. I also chose to try this job because I don't have to talk to anyone while I work, like I don't have to deal with serving customers, I don't have to sit at desk and look at a computer all day, the people are super nice, very down to earth and friendly, and the dress code is a company tshirt fully covered shoes like sneakers or comfortable flats and whatever bottom you want as long as it's modest like sweat pants, jeans, leggings, modest shorts or a modest skirt. And one of the great perks is that every three months, any product that is not able to be sold, like if it was packaged incorrectly or damaged even just a tiny bit, the employees are allowed to take them home. Most of the people who work there have never had to buy toothpaste again after they started working there. And in this particular company you can get promoted very quickly and the difference between the entry position and the next position up is $4 an hour difference.

The cons are that the work can be difficult. Not in a sense that it's hard work at all but you have to stand the whole time, which is common in many jobs, and you have to keep up with the pace of the conveyer and sometimes the pace can be very fast. It reminds me of this one I Love Lucy Episode where she worked in a candy factory. But I also like that the work is repetitive, almost like stimming at times, And every two hours you switch to a different part of the line so you are not doing the exact same part for eight hours. And you don't work the same product line every day. But I love that everyone is so nice and you can chit chat to each other about whatever you want when you are working or you can choose to not talk at all and no one thinks you are rude, they just think you are focusing. I sometimes sang softly and that was great too. And all the employees know that this company is big on hiring disabled people so if you tell your coworkers that you are Autistic or whatever, they are very supportive and a lot of them are Autistic also. Yesterday The Arc of our city was there and brought a guy into our line to see if he could do some of the work. They had him jump in where I was and even though he had a little bit of a hard time everyone was supportive of him. I love that in this particular situation I can be myself and no one minds. I even rocked while I was on the line because it was soothing and helped me get into a rhythm and that was perfectly fine.

Skibum, congrats on the new job. I'm glad you really like the people and the environment also. They can make all the difference, and it sounds like a nonjudgmental place to work. Great find, and good luck in the special olympics!

I also struggled a lot before getting my diagnosis because I was nervous they would not find Autism even though I was so certain from my research that it had to be that. The night before my diagnosis I called my brother in tears because I was so afraid. He reassured me by saying that even if they did not find Autism they would find something because I am definitely not normal. I started laughing but I knew he was right. They tests they do at that office are very comprehensive and if they did not find Autism they would find something else.

I also struggled with wondering what it would do to me if I had this official document and wondered if that could be negative in any way. But I do not have to tell anyone that I have it and I am not required to show it to anyone or even have it in my medical records at a doctor's office. And my physiologist is not allowed to tell anyone without my permission. So I have complete control over who knows and who doesn't. Except for this Autism registry that Aspie Utah mentioned. I don't know about that. But maybe that is not something to have to worry about. And I was very blessed and lucky to get a great psychologist. He is the one who did my diagnosis and he is absolutely fantastic. He even told me, just like the person who first told me that I am on the Spectrum, that my Autism is so obvious he did not even have to bother testing me. He could tell from the first moment he saw me in the waiting room when I came for the tests. So even if you are good at appearing NT, if someone is skilled and knows what to look for, I believe they will see it. There are things that we do as Aspies that we are not even aware that we are doing even if we are good at masking and a trained eye can spot them a mile away.

I love that it is nonjudgmental.
Thank you so much.

Ski bum reading your posts, could relate a lot and reading about your job and the environment has me rocking and smiling. Congratulations.

In the first hour of my first day of work yesterday, I dropped something and when I bent my knees to pick it up I had an embarrassing moment. I had been wearing a pair of my husband's old cargo shorts which are cotton. They fit me well but they have been washed many times and they have not stretch to them. So when I bent down in a kind of squat to pick up what I had dropped, they split down the the front inside of one of my thighs all the way from the bottom seam to the crotch seam. No one laughed or made fun of me at all. No one even made a big deal of it. Once a supervisor was able to take my spot in the line, another supervisor grabbed some packing tape and we were able to tape me back together again. I know other situations where it would not have gone well if that had happened. But this environment is so laid back that it wasn't a problem.

Thank you! Rocking and smiling are always good!

You are going to meet a lot of us here who knows what it feels like.

When I got diagnosed I was pretty clueless and had been "pretending to be normal" for so long that I did not know I was doing it a lot of the time, and when I did know I thought I was doing it better then I actually was. At the time I came upon the following video by a video blogger The AnMish that delves into this topic. This video was the most important moment is my self rediscovery process. This video is pretty raw and emotional so get out your hankie. Her other videos I find informative also.