Do self-diagnosers ruin it for the rest of us?

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i have to pick my kid up in 2 mins so dont have time to respond to everything right now but one issue for me aside from the bath taking discomfort ( sore skin after ) towels being damp and worst of all the putting on of clean clothes , it took me years to get over this and i will confess i change my t shirt in the morning because i cant stand to put a fresh one on at night , if i do that i just cannot get to sleep. i need that worn for a while feeling to be very comfy. i guess it doesnt help public perception of me as all of my t shirts jeans and jumpers are the same , i hate to buy something new because it will never be as comfy as my old worn out t shirts which i bought from a whole sale company , i have 2 colours black and purple and have 20 of each . 5 pairs of jeans all the same too.

will reply to other posts when i get home .

Yes, there are. I'm in the process of getting my diagnosis that way. Basically, they diagnose you, and if you are found to have ASD, then you're included in the study. If not, you're basically part of the control group. However, my diagnosis won't be valid for anything outside of the study. In other words, I won't be able to use it to apply for social services or anything like that. I'm alright with that, because I think that at 33, I'm as adapted as I'm going to get.

You're not the only one, natty; I've got eight black pants of the same style, and eight shirts of different colors but the same style, and wear them in rotation. They're starting to get a little worn and I'm worried about where I'll find something else similar, because stores are forever discontinuing kinds of clothing. The shirts are already discontinued, and I had trouble finding the pants last time I needed a new pair. I dread having to go and try out a million things until something feels right, but it'll have to be done eventually.

Showers used to cause me a great deal of trouble; not so much now, as I've gotten somewhat used to them, and because I've learned how to take less than an hour. I used to be stinky. It took a while to learn, but I did. I can't very well assume that people who are stinky are doing it just to annoy other people, because I was oblivious for a long time, then just too tired and disorganized for some time after that. Really, though, once you know about it (and know it's possible to fix it), it's an important thing to learn.

Nonetheless, you went through a 'vetting process, ostensibly the same you would for a non-research diagnosis. The fact that it can't be used for disability or other things is purely bureaucratic, and in no way is the same as someone with no assessment/'vetting' but a "self-diagnosis" being included in a study as an autistic subject.

Unless you are saying that the research assessment was done in an insufficient or shoddy manner.

Oh, yes, I've heard that all my life. On occasion I act so well that people who aren't really paying attention can't see any problem. I'm good at emulating things. I have a sense of humor, and can imitate just about anything, especially accents and movie lines. Only if i'm in the right mood. But it's easy for things to fall apart. One minute I can sound like a capable educated person, and the next I feel like a 6 year old. To actually communicate what I'm really feeling, people don't seem to understand it, and talking makes me tired after a while. So I resort of imitating movie lines and making jokes.

As I get older, it's becoming more difficult to navigate the twists and turns and the tightropes of life. I'm also more detached emotionally because there's been so much to detach from. Well, there it is.

Seems to me that this entity that makes us the way we are, is there, in varying degrees and us humans are trying to make sense of it. The doctors don't understand it, either. If you feel that the symptoms resonate with you and suddenly things seem to make perfect sense, then so be it. People rely too much on 'the doctor says this and that'.

Yes, it's important if you need an official diagnosis to get a particular kind of help such as for school or for job training, or applying for aid, but if you are an adult who is just looking for some understanding from like-minded people, and you want to make sense of some things from your childhood or learn how to explain things to a friend or spouse, then self diagnosis is good, too.

I don't have a problem with self diagnosed people. If nothing was wrong with their ability to function in society, then they wouldn't be bothering with any of this, or participating in WP or similar support groups would they?

I'm self-dxed because:

1. It's next to impossible for me to go and see a specialist on my own because I'm 15
2. My parents don't know what an ASD is and I am often scolded for having Aspie traits
3. I can lie to people straight in the face because I don't make eye contact, so I can lie to my parents about being social with ease
4. I've learnt to adapt to social situations by using other people's words, echoing what people say (I have learnt that people like me to agree with them, so this works extremely well), scripting, forcing eye contact etc.

The only time when I tell people about my traits are when I'm on this forum. I don't use the possibility of me having AS as an excuse for anything. No one I know in real life knows about this, so I'm just marked as slightly quirky. Sometimes it's good. For example, I'm not overly concerned about hygiene, so during camps when people want to wash their hair and condition it and are miserable because the water is freezing cold and they can't get all the shampoo/conditioner out, I just splash water on myself and call it a day. But sometimes I do suffer because I'm quite hypersensitive so small noises distract me and certain smells make me feel nauseous (e.g.: the smell of lipstick). I've learnt to just grit my teeth and get on with real life, and I personally don't think that a dx will change anything for me. I might even suffer more if I get one, so I may as well leave my life the way it is now.

This is very true. As a 16 year old at the time, I was misdiagnosed as having bi-polar because many of my behaviors were seen as being very similar to those with the disorder, but my alexithymia was taken as emptiness/loneliness instead of an inability to process certain things. When asked how I felt, I responded with "I don't know" eventually frustrating me greatly. The only way I can get around it is to write down/type out every thought that enters my mind as soon as it occurs and summarize what I'm trying to say by piecing together the important parts. It's also much easier for me to explain myself when I give myself a considerable amount of time to jot these things down rather than go for an explanation quickly. At any rate, I felt something wasn't right when I felt no changes from all of the medications I was taking. I had gone through combinations of depakote, seroquil, paxil, atavin, lithium carbonate, geodon to no avail, only bad side effects such as random blackouts and massive breakouts of hives on my body.

At the time though I thought my uncle (on my mother's side of the family) just suffered from obsessive-compulsive disorder instead of having AS, and although I knew my brother was autistic, I just assumed it was some form of a mental handicap. I didn't realize that he had AS, or that AS even existed. So I wasn't able to give a proper family history either. I didn't even know much about them until around a few years ago.

I think a large part of the problem is most of society isn't properly educated correctly on autism and AS, and how those things affect people; not so much as to who considers themselves to have AS and who has it documented on paper. Personally, having AS isn't something that I would readily let people know about myself. I want to be seen as regular, not irregular. Outside of speaking about the subject with a handful of people that I know after I found out about having it, I don't even like discussing the matter with people.

Just wondering--is it common for people not to know much about autism even with autistic people in the family? If so, the doctors have even more explaining to do than I thought. On the other hand, you mentioned not knowing them well, so maybe you grew up separately from your brother?

Like thank you notes for a gift that was given in person. You gave it to me and I thanked you. You have been thanked. Doesn't it seem arrogant to demand I thank you in writing, not to mention a waste of money and natural resources?

Ok, but referring back to my post on page two what benefit (from the ADA or otherwise) does an official diagnosis as an Aspie confer? If I had this information I might go to the expense and stress of seeing a professional.

Gah, my bad. I meant I didn't know much about AS/autism in general. My behavioral patterns differed greatly from my brother by the time he was diagnosed. We shared certain things in common, but my mother just assumed I had become very anti-social due to being an adolescent. It wasn't until my late teens and failure to respond to various combinations of medicines that we started piecing stuff together. And then I learned what was actually wrong with my uncle, who is now currently in his late 40's and still with my grandfather (his father).

As for your question, in the late 90's I didn't have access to internet, and our schools did nothing to teach about autism in health classes. Literally, the subject was never discussed at any point, period. My mother simply explained to me that my little brother works differently than most children and to just try to be easy with him. Our way of trying to bond was to play video games together or watch certain cartoons. A lot of the time though I would be the exact opposite, preferring solitude and listening to music constantly.

Culture-wise, the area I grew up in is behind the rest of the country by a few years. Coupled with the fact that by the time autism was becoming more widely understood by public schools, I was past the age where adults would look for certain patterns in a child and it was just assumed that I had issues integrating myself correctly with my fellow classmates. I did exceptionally well in my classes up until late junior high, so no one thought I had any sort of learning disability either. I just stayed under the radar basically.

The doctors do almost no explaining. Anything that Joshua- or anybody with an autistic person in the family- knows about autism came from a source other than a doctor.

Ok, yes, I'm somewhat bitterly over-generalizing. But doctors are really just about the worst resource there is for learning about a family member's autism. Probably it's because their time is so expensive so they don't use much of it to explain things. Instead, they hand over a diagnosis and a brief explanation and a pamphlet. Yes. A pamphlet. When our daughter was diagnosed we spent about 20 minutes in the doctor's office getting their explanation. What can really be summed up in 20 minutes? And they gave us 3 pamphlets (I still have them). All actual information came from other parents, teachers, books, the internet (your blog, for one, which I found before finding WP) and of course WrongPlanet.

Vent over. Carry on.

I agree. I remember I once called someone to say thanks for a gift voucher she sent me and she threw a sulk because I didn't thank her face to face. WTF? I was showing appreciation, for flip's sake.

I've met one saint in my life, and I devoted my life to her on the spot. My woman, Courtney, she is the type of person who feels bad when considering how others may have been hurt by statements in the past, and who is perpetually surprised when people aren't genuinely kind and sweet to each other.

I do my best to protect her innocence, as it is a wonderful thing to be cherished and praised, we recently did several personality tests. She's a Jungian Champion/Enneagram Type 2 Helper, and I'm a Mastermind/Investigator.

So basically she's the Superman type, and I'm Lex Luthor. Awesome!

I always did get that vibe from those two . . .

Many "self-diagnosed" people don't feel the NEED for a professional diagnosis. These are the people who don't use the "Don't blame me I have Asperger's" excuse. They don't need a formal diagnosis because although they may be 99% sure they are somewhere on the spectrum, they will do their best to not let it hinder their success in life (and will never use AS as an excuse for anything).

As for me, yeah I am pretty sure that i have it. And no thank you, I don't want to deal with most of the psychologists/neurologists/whoever else around here. I have dealt with plenty, and never once did they think that shoving medications down my throat was the wrong answer. They told me themselves that they could not help, and even accused my mom and I of "jumping clinics." Most of the times I could not even answer the questions they threw at me any way, and I didn't even know what AS was at the time so I couldn't ask to be tested.

I had a 0.02 (?) high school GPA and took an equivalency test to leave that hell hole. But right now at the age of 17, I am in college and doing better than I could ever have expected. There are a lot of challenges, but I save most of my energy so that I can force myself to bulldoze through these challenges. The hardest challenge so far wasn't getting mostly A's, but it was having to ask two professors each for a letter recommendation. I did it, but I am having to force myself not to replay the conversations in my head because I will mentally kick myself.

I wish everyone happiness on this forum. I also want to thank everyone for being so nice and welcoming.