Question for the self diagnosed

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You also get treated differently by the government and insurance companies diagnosed as an adult. They assume that if you made it this far that you taught yourself coping mechanisms already and don't need their care. I've talked to two councilors who believe I am text book Aspergers but refuse to give me an official diagnoses because it means that the insurance company would have an excuse to deny coverage.

I am sorry that you have heard there is no "real" protection. I am not sure what is more real than direct legal action. Thank you for welcoming me, I have looked at the forums before but only recently joined. The difficulty may be in showing how your job is negatively affected by your ASD and how the job is able to reasonably accommodate you. This may be the reason for a perception of no "real" protection. The United States unfortunately has a similar economic bar to legal service as it does to medical service at times. A minimum wage employer may not be able to make reasonable accommodations for difficulties due to cost. Contrast this with an office job or something similar, where I have had positive HR directed accommodations in the past and fully expect to have them in future employment.

FallingDownMan, I am sorry if this is an assumption but I would imagine those meetings were before passage of the ACA. Insurance companies are no longer allowed to deny coverage for pre-existing conditions, but they can cancel coverage for placing false information. Furthermore, as my understanding is that we don't have a "medication" that "fixes" us, flak about expensive co-payments are weak at best. Again, advocate.

My dad's the same way. He was almost in tears asking, "Why do you need a label?" That made it a little difficult to get good info about my early years, but all of the funny stories about me as a toddler make complete sense if you realize I was autistic. The stories are still funny, they just make more sense now.

I didn't say anything other than "mama," "dada," and "no," longer than a typical child should, and my parents started to get concerned. Then I busted out with, "Scooby Doo, where are you!" My mom chalked it up to my tendency to not do an activity until I knew I could do it perfectly. It's still funny now, but I think the reason was far different.
Me: "Dad, when I finally starting saying more than three words, did I still not speak much?"
Dad: "Oh, no. You talked all the time. You used to drive your mother crazy following her around the house all day repeating everything she said."
Me: "Daaaaad! That's echolalia! It's a common symptom of autism.
Dad: "Hmm..."

When Time came out with an article on autism about 10 years ago, it struck a chord. I have a strong background in psychology, so I dusted off my DSM-IV and looked at the sections on Autism & Asperger's. The DSM-IV had just been published about the same year I took a course in child psychology, so autism was only discussed in passing in that class. Instead, ADHD was the trendy diagnosis at that time. Comparing my childhood to the DSM-IV descriptions, all the struggles I had dealt with started to make sense. I queried an older cousin who was a special needs teacher. She thought a moment and said, "Yeah, that makes a lot of sense. You used to just cry and cry for no reason."

I didn't have a need to get a formal diagnosis since I was a housewife and I already had a master's degree. Now, I think it would be difficult to get a diagnosis since "D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning," doesn't really apply to me anymore. By reading up on the subject, I was able to identify ways to compensate for the problems I was having. Having a husband with some aspie traits helps a lot, and we balance out each other's abilities pretty well.

ah yes I am having same conversations at the moment, I keep spouting out autism symptoms, it has become a bit of an obsession which can't help with the whole accepting it considering I keep going on about it

I never had echolalia I don't think, I was selective mute through the majority of primary school which went away by its self pretty quickly.

yeah when I ask about my early childhood my parents say they can't remember, I wonder if I should be insulted or if its just a defence technique to get me to stop asking.

Yes, I was thinking the same thing. FallingDownMan, I assume you were paying your counselors out of pocket? Some counselors get less compensation from insurance companies than from cash payments. I hope your counselors weren't looking out for themselves more than they were looking out for you. If you're currently going to one of these counselors, ask again about diagnosis and bring up the ACA. Maybe it was an oversight, but maybe you need to get a new counselor.

I go through phases of mild mutism, echolalia, and rattling on and on, but most of my speech is typical. Echolalia is the only problem I've addressed. It wasn't until I figured out about it that I could pause, think, and make a genuine selection rather than repeat the last option a waitress gave me. "Do you want baked potato or fries?" So many fries...

Pardon me, but when did asking for a professional medical opinion become a process of negotiation? If there is no 'yes or no' answer, then there is no point in asking the question.

So many fries! LOL!! !

You have a lot of faith in psychology. Even medical doctors can misinterpret hard science like xrays. IF somebody tells you there's nothing wrong with your leg, but you can't walk on it, wouldn't you go to another doctor? My degree is in psychology, believe me, it's not hard science in the least.

FallingDownMan said, "I've talked to two councilors who believe I am text book Aspergers but refuse to give me an official diagnoses because it means that the insurance company would have an excuse to deny coverage." The ACA makes it illegal for insurance companies to deny coverage due to a pre-existing condition. FDM's counselors refused to give him the diagnosis they thought he deserved either because it was before the ACA was enacted, because they were misinformed about the law, or because they were lying. It's worth looking into.

I think you meant objective, not subjective(?) but actually I think your subjective experience of yourself is important here, because autism currently cannot be measured or quantified in a totally objective way, like a lab test. Even when you get a professional opinion, it is still based on their subjective interpretation of your symptoms and of the diagnostic criteria. You could get 10 professional opinions and every one of them might be different. Until they pin it down, I feel more comfortable saying I have PDD-NOS because I clearly have some sort of developmental disorder. I just don't know if it is exactly "autism" or not. It could be atypical autism, or it could be something else that hasn't even been identified yet. But whatever it is, it seems to be genetic because it definitely runs in my family.

I self-diagnosed with ADHD before I was professionally diagnosed, and the interesting thing is that I was the first and only person who recognized I had ADHD. No one else who had figured it out, or even suspected it as far as I know....none of my teachers or counselors, or the psychologist or psychiatrist I saw had ever suggested it. I had been labeled with various things and nothing fit because I had never been properly evaluated for anything. But once I knew what to be tested for, I had a full evaluation done and was officially diagnosed.

I think both kinds of opinions are valuable, your personal opinion and those of others, and the opinions of others can be divided into professional and non-professional, but even professionals miss things or make mistakes or sometimes they are just unprofessional and shouldn't be treated people to begin with. Even when you seek external opinions, you still have to use some of your own judgment in deciding what opinions make sense and which ones need to be discarded.

I'm not 100% sure but for me the confidence comes from life experiences plus test results in quizzes used to help diagnose. It wasn't until I joined this site though and started reading threads that I realised how much I relate to people here. So whether I get a diagnosis or not I feel like I fit in better with people on the spectrum than NTs.

Last edited by Dan_Undiagnosed on 07 Jun 2014, 12:30 am, edited 1 time in total.

Personally, I'm about 100% sure that I am Autistic, but I would NEVER UNDER ANY CIRCUMSTANCE tell another person that I am Autistic without a diagnosis. I have told about four people that I feel very strongly that I am. It really ends up meaning nothing to anyone I've mentioned it to, they are too busy with their own lives. But I feel to tell someone I am Autistic without a diagnosis would be kind of lying because I think to say you have it infers that you are diagnosed. Not judging other people, just how I feel about myself.

This is pretty much how I feel. Attwood describes that by age 8 most AS kids discover that they feel different than everyone else. While this alone isn't a defining factor in why I believe I have Asperger's, I have always felt very much different than everyone else from my peers to my family. Reading diagnosed people's memoirs and blogs ring true to me. Reading what people say on here rings true to me. Attwood's Complete Guide... was like reading a story of my life.

Something clicked, and all of my troubles with interpersonal communication, executive functioning, reading body language and social cues, literal interpretations, learning how to "be normal" by watching people on TV act, limited interests that are solely focused on 1 or 2 special interests, stimming like a mad man, terrible motor skills, fairly extreme sensory issues on certain environmental influences, rigid thinking, absolute routines, and on and on I can go. Today, I'm a socioeconomically struggling guy who just finished college after a decade of school. I've been chronically underemployed and I've been a terrible underachiever relative to my intellect. I get along better with people that are younger than me, but when I was young I was always around older kids and adults.

I also have common co-morbidities: disabling depression, anxiety, ocd, and gender identity issues. My self assessment quiz scores are high enough that are well beyond the shades of grey. Most importantly, I've had all of theses problems since I was a young child, so I know that it's not a personality disorder. I was the annoying "little professor that never could be wrong." It's been helpful being able to talk to my family about my concerns.

Basically, I'm saying I could be completely wrong, but there hasn't been anything else that has ever explained why I've had so many problems as close as this syndrome does, so it doesn't seem likely to me that I am. I plan on getting evaluated; it's important for me to have my own self-assessment corroborated, but for now I know how I can try to work on making my weaknesses less impactful on my life.

For now, if anyone has a problem with me identifying myself as an Aspie because I don't have proper papers, then I could care less. It's probably more to do with their own issues, than me. Of course it would be nice to fit in, but I never have, so it wouldn't be anything new to feel ostracized.

Here's a great blog article that discusses the defense of self-diagnosis that i found very poignant."Self-Diagnosis, Self-Acceptance"

I have no issues with people self-diagnosing, based upon DSM criteria. I myself could never do it. Why?

1. The criteria seem to be based upon observed behavior. And I have no clue how I am perceived by others.
2. The criteria are written using words I don?t necessarily understand (e.g. social/emotional reciprocity, relationships, etc.).

I wish I better understood these concepts and had better self-awareness. But I do not.

I will not be able to get a formal diagnosis but I am still 100% certain. This has been informally backed up by numerous persons with experience in Autism. There is literally no other explanation for my quirks. Lest you say I cannot objectively diagnose my issues I have successfully diagnosed my last 6 medical problems without saying a word to the Doctor beforehand.

Sure it would be nice but even an expert diagnosis isn't going to suddenly tell me something I don't already know. Would have been nice to know as a teenager though.