Self-diagnosis

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I am undiagnosed, and am working on getting evaluated. It has been extremely difficult.

The school I went to for elementary school don't hold onto records unless you graduate from the school. I transferred out in sixth grade. By some cosmic miracle, they still had my records which amount to end of the year academic evaluations and copies of my report cards. The speech therapist and child therapist I had seen through the school were not obligated to hold records of our sessions, and you have to take my word for it that I saw them. The school had a 200 word referral letter from my preschool program, which is the only document I have from them, because my preschool only holds onto their records for students for seven years after they graduate. I am uncertain of whether I should attempt to get my hands on my pediatricians records, because I only saw them for vaccinations and yearly examinations. This is all relevant, because part of being evaluated for autism as an adult relies on building a picture of your development as a child.

I went to a psychiatrist, who upon meeting me, told me that I was "too expressive" and "too intelligent" to have asperger's. He spent our initial meeting asking basic questions about where I had lived and my education. He had told me it was "unusual" for someone with autism to have not just a bachelor's degree, but one in the arts (I hated it and didn't want it, but that's a story for another time). He is not unique. My therapist and general health care practitioner have both made very disparaging and ablist remarks about autistics rather than discuss with me my issues with sensory processing and social difficulties. Autistics, according to them, can't be pretty, they can't smile, they're always savants, they're always asexual, and they don't feel any desire at all for human companionship.

The psychiatrist, like my therapist and GHP, did not ask me about my symptoms or why I felt I might have autism, and was resistant to my efforts to turn the conversation in that direction, going so far as to tell me to stop talking when I persisted. When he petitioned my health insurance company for them to cover diagnostic testing, they turned me down. He admitted after the fact that he had no prior experience with individuals with autism. He is the only adult psychiatrist for 50 miles that agreed to do diagnostic testing, so, silly me, I assumed that meant he actually had some grasp of what autism was.

There are a couple of autism service providers in a city sixty miles north of me. One has an indefinite wait list for diagnostic services for adult patients, and the other does not offer the service to adults period. There are five autism service providers in the city seventy miles east of me that I was in touch with, but their diagnostic services cater exclusively to children. I have gotten in touch with a university fifty miles west, and another one hundred miles west. I have yet to hear back from either. If they tell me no, then the next place I will be in touch with is three hundred miles south.

I have a car, but I have no where to stay when I get there. If I want time off from work I have to ask three months in advance and it's not a guarantee you'll get it just because you asked for it. Evaluations take multiple meetings, over the course of multiple days. Even *IF* my boss gives me the time off, I don't know if I could afford even a crappy $60 a night one for that long.

If my petition to my health insurance company for them to reconsider whether or not they'll cover diagnostic testing does not go result in them covering the expense, I have to pay out of pocket. The minimum I will have to pay for diagnostic services is $2,000. I work part time and I make a dollar more than minimum wage. The limit on my credit card is $1,000, but I have a $400 statement (car repairs! doctor's appointments! eek!). Every month I pay $500 in student loans. My fiancé helps with rent/car insurance/phone in addition to footing his own loans and expenses, so things are really tight financially right now. I don't know what we would do if we weren't living with my parents. My parents initially said that they would help me pay, but that offer has been retracted. I am still intent on finding a way to pay for being evaluated because I feel I need this for peace of mind. I don't know how I'll find a way exactly, but I'll worry about that when I can find someone to evaluate me.

If reading all of that has been exhausting for you, I can promise it's nothing compared to living it first hand, especially when you add in a healthy helping of executive disfunction and no one willing to help you. Which is why I understand completely why some people continue living undiagnosed.

Getting evaluated is a privilege not everyone can afford or is capable of acquiring. Add into the mix misdiagnosis' that comes from sexism, classism, and racism, I feel comfortable with people self-dxing themselves even if I don't feel comfortable with it for myself ¯\_(ツ)_/¯

I was just diagnosed by a professional. This after 20 or so years of knowing that I'm on the spectrum. (I used to be a special education teacher. It was super obvious which group I belonged to.)

Let me tell you this. It was non-sense.

We only met for three hours face-to-face. He had questionaries to fill out. Questions about my childhood. But he didn't get to know me. How could anyone get to know me well enough to really get to the core of what's going on with me without knowing me intimately? I'm very good at hiding my symptoms. I was trained for years by parents and teachers, with a very firm, sometimes abusive hand. The only reason he gave me this diagnosis is that I wrote out for him a list of all of my sensory differences and social/employment concerns.

I'm glad I went for diagnosis because I won't have to deal with therapists who don't take me seriously, and with haters like we see on this thread. I have a piece of paper now, that was written on by a white dude in a white jacket. And suddenly I'm OK to call myself autistic and not have that questioned.

But I haven't changed. Nothing is different about me.

Because of my intense interest in autism, I can tell you more about autism than that doctor can, especially as it applies to myself.

I think the reason people get so defensive about an autism diagnosis is that they feel like it's their source of power. They feel like they are this in group and they get to decide who gets in and who is left out. That feels good. They like the power. Its really kind of sad.

I grew up with diagnosed learning disabilities. And I had to go through the trauma of going through a special education system that didn't meet my needs. I understand the grip in my stomach that comes when I hear grown adults who don't have that trauma claim that they are dyslexic or something. It feels like they are claiming something that they have no right to claim. But since I know so much about autism, I know that I can sometimes be extremely rigid in my thinking. I know, logically, that they might have a whole different set of traumas to work though. And I know that all the help that I get isn't reduced because someone else is also getting help. There's not some kind of help quota out there that means only some people deserve empathy. I choose not to live in this trauma. I choose not to maintain my sense of power by keeping down others who had different experiences than I had.

At the same time, its kinda nice to be officially diagnosed so I can feel empowered to say things like this. It SUCKS that some medical doctor, who really doesn't know me, has the right to make that judgement above my own judgement. But I do enjoy the consequences.

You shouldn't call yourself autistic until you get an official diagnosis, but I understand the frustration.

I wasn't officially diagnosed with ASD until this year. I had to get health insurance through the Healthcare.gov website. And then I went for testing after a background interview, but I had to wait about a month after the background interview before I could get testing. In total, it was nearly $550 (after insurance) for the background interview, the testing, and the follow-up where my test results were discussed, and that's after paying $300 a month for the insurance.

I was lucky that my uncle had his own business and needed someone to do his bookkeeping. Without that job, I would not have been able to afford testing or to continue to pay for the insurance. My parents were little help, as my mother was in complete denial that anything was ever wrong.

FYI, my diagnoses was ASD Level 2.

I'll be honest. I'm not in the least bit interested in autism. Not at all. I suppose in a true AS fashion this does not fall within my narrow range of interests.

I don't want to know anything about it. As a matter of fact, when I do go see a specialist I will expect some ready to go solutions for unf*cking my life. It is not a "label" that I seek. I only want hard facts and solutions to problems.

Soncallysensitive, I a curious. Are you formally diagnosed with Autism?