Diagnosis rejected by state and can't get rediagnosed

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I've had a really sh***y day. I woke up to a rejection letter from a job that I thought was gonna be a sure thing. The interviewer did an actual interview (which is rare nowadays), I have a friend already working there who recommended me, and I have degrees from "Big State School" which are highly coveted in that city. I thought I would be numb for the rest of the day but boy was I wrong.

Last November I tried to get VR services from the state and they said I needed documentation. They had destroyed my prior documentation and tests which had been paid for by them. They no longer do that kind of stuff and expect me to pay for my own testing. If I had a job I wouldn't need VR. They send me to the county hospital who brushed me off for not having a "real problem". They finally interviewed me after making me wait all day (I had an 8:00am appt) and sent me home with a letter saying my symptoms were consistent with AS. I was assured that the state would accept it. They didn't.

Next the state sent me to a city run mental health operation (let's call them MHO). These people don't know what they're doing. Two weeks ago I called their hotline as suggested, was interviewed and was told that I would be sent something in the mail and receive a phone call from a specialist. I never got the call. After waiting a week and a half I call back and was told that they had forgotten about me. I was told that someone would call again. I actually did receive a call and another interview. I was told that to receive services I would have to send documentation from my last shrink when I was in college, but nothing with a formal diagnosis was required. I had a split file so I needed to fill out two forms, one for a psychiatrist (who focused on the physical side), and one from a counselor (who did the relationship stuff). I get the request forms and fill them out but I need a way to fax them. I can't send them from my dad's office because my parents are hostile to the entire concept of mental illness despite OCD, Schizophrenia, Depression, and Bipolar Disorder running rampant through my Mom's side. I can't send them from a Kinkos or the grocery store because they read everything before they send it. I ask MHO if I can use their fax machine to send it. This is very confusing to them. They can't understand why I would want to send the permission forms through them. I explained it over and over again. Their responses?

Just sign OUR form and we'll SEND them OUR documents.

Why would you need to fax it from here to here? Just bring it to us.

You don't need to be here for them to send it.

Just use a Kinkos.

Just use a grocery store.

I repeated myself over and over again because I kept getting transferred. They couldn't get it through their heads that I needed to give permission to my former therapists to send paperwork to MHO. The few who did couldn't understand that I didn't want someone outside HIPPA laws to handle my paperwork. I asked them how much time they spent complying with HIPPA laws and was met with silence. I asked them why they thought those laws existed and was told that they weren't doctors and it was okay for them to handle my paperwork so it would be okay for someone at Kinkos to handle it. I pointed out that they were required to comply with HIPPA and no non-HIPPA person would be allowed to touch my paperwork and she shouldn't even be suggesting that. After lots of back and forth I finally get permission. I drive there through rain and slush.

I go inside and see a security guard. She asks where I'm going and I tell her that I'm going to the Records office.

"Oh, that's on the 2nd floor."

"I was told to go to the 4th floor."

"Who is if for, your child?"

"No, it's for me."

"You don't wanna go up there. That's for ret*ds." Then hand's me a big sticker to wear that says 2nd floor.

I go up to the 2nd floor and have to explain all over again. A woman agrees to fax the papers and I point out that I have to sign one in front of a witness and that she would have to sign as the witness. She agrees and takes the papers back into the office. Then she tells me she needs to use a different fax machine and goes into secure area. She comes back and hands me the paperwork. I look at it and see that she didn't sign it. I pointed that out and she gets an attitude with me saying she refuses to sign anything.

"Even as a witness?"

"No!"

I told her that I needed it to receive services and she told me that I was wrong. I was supposed to go to another facility and wait in line so that I could go through eligibility processing. I told her that I had already gone through all of that on the phone and she said it didn't matter and I'd need to do it all over again in person. I leave extremely pissed off and leave a voicemail with the person who told me that I couldn't get services without documentation. I call the main line after I get home. It's answered by the same woman who helped me the last time they f****d up. I tell her the whole story and she transfers me to the people on the 4th floor who I should've talked to in the first place. This woman tells me that I indeed couldn't get services without documentation. I asked why I was being told two different things and she said that they were divided into two sides, mental health and developmental disorders.

She told me that I had already been placed on a list but I was at the bottom because I'm not on Medicaid. She said I could move up on the list with documentation. I told her that the docs were on the way. She said no, we need childhood documentation. I told her that I hadn't been diagnosed as a child. She said my file mentioned a prior diagnosis for a learning disorder. I told her that I was 20 and in college. She said she couldn't use that and that she needed report cards and transcripts. I told her that I'm in my 30s and don't even have any of that stuff, but I have college transcripts that can easily display what kinds of things I struggle with. She said anything after the age of 18 was useless and that if I wanted to move up the list I'd have to bring my high school transcript. I told her that there was no childhood documentation because nobody thought it was odd that I was struggling. They just gave me sh***y grades. When the barely middle class black kid struggles in an upper middle class white school system nobody thinks it's odd. I asked her how long the wait is without the transcript. Her response?

"One year."

My problems weren't even known to me until I was 18. I had issues in elementary school but my parents were in denial about it and my records have since been destroyed. My grades got better over time so everything looked normal by high school.

Why is it so damn hard to get diagnosed?

Enough for a Hollywood script - a real catch 22...and they wonder why people go postal (please dont)?!
What an awful mess you've endured! I hope things get better, but after reading what you've been through - it's hard to imagine it getting worse, I hope you do find a good job.
I've got no suggestions unfortunately -
I never had a diagnosis either - not even at your age, as there was none back then - I was only diagnosed last year and I'm in my 60's, and have actually lucked into a reasonable financial situation - but some things never change and the struggles persist - but much can and does get better.

Crike, what a nightmare! It really seems to be a crap shoot, where you've gotta be in the right place at the right time and meet the right counselor. Your story gives me an anxiety attack just hearing about it. I'm terrified that one day I'll be notified that I have to go back and go through the process all over again to meet some new government regulation, since the Psychologist who diagnosed me has switched specialties now and is doing PTSD work with Military Vets in another state.

Hopefully, you'll find an alternative route if you keep looking. In the meantime, start marking the days off the calendar and the year will go by before you know it.

Wow, I'm sorry you had to go through this. It sounds like a person has to have the skill set of an entrepreneur just to engage with the bureaucracy.

And I think the person on the 4th floor is both right and wrong on the central issue. Yes, Asperger's-Autism Spectrum will be present in childhood, but there's a hundred and one reasons why it may not be documented. And it sure would be nice if she understood this second part. As you explain, your struggles were not taken seriously hardly even noticed, because you were a barely middle class black kid in a upper middle class white school.

If they want documentation, they have the stuff from 10+ years ago at college. Actually, I'm not sure why they can't look at your situation now,

Do you have sensory issues?

Intense intellectual interests,

Patchy social skills, good perhaps even above average in some areas, but not in others,

Do you stim, functional in some ways but not in others?

If yes to many or most of these, then the way I look at it, you probably are on the Spectrum.

The part with jobs is brutal. Straight up, what is probably happening is that you are being negatively labeled because you haven't had a job in a while.

In response, you've got to be very strategic. Start some discussions on the Jobs forum. For example, one thing to consider is to say you were helping take care of a family member. I think this is acceptable as a lie of deflection. I just don't know if it's all that effective. Other people may know.

All this even though the economic crash of 2008 was a really big deal, and the total number of jobs basically flat since then.

I was diagnosed in 2003 officially i think or at least that's when they gave me ssi, when i was in 1st grade(1992i think) they knew i was different and stuck me in special classes for reading/writing, this continued for all of my schooling, actually in middlschool i took both a regular writing class and a special one and they contradicted each other every so often.

if you didn't stop making payments on the loans and have no income, you should be able to do deferment, that's what i had to do, it last for 3 years for me, and if i don't get a job by then i going try to do disabled wipe. i have a 10k loan for degree in a filed i can't work

and yeah i hate government bureaucracy its so wasteful, one person tells you A another tells you B, when i graduated college i spent a whole day going back and forth, from one place to another to get in the event. and they reviewing my ssi claim right now , i mean i get every 10 years for some disorders, but aspergers doesn't get cured, it won't just go away.

more drama today...

I get an unexpected call (they're pretty much all unexpected at this point) from the last lady I talked to at MHO.

"Is your mother still with you?"

"What?"

"Is your mother still with you? I need to talk to her."

"Why would my mother be here? I'm 3x years old and live alone." (which is in my file)

"Some people's parents have died and are unable to be interviewed."

I see that she means "still alive" when she says "with you", but the answer will remain negative.

"I need to talk to her about your childhood development."

"Ma'am, I already told you yesterday that my parents can't be involved."

I then rehashed everything I said previously about my parents' lying and denial about mental health issues in the family.

"Ok, I'll tell the psychologist and see what he says. He wanted more info after reading your file."

Later I get a call from the shrink.

"Mr. XXXXXXXX?"

"Huh?"

"This is Mr XXXXXXXX right?"

"No."

"Oh, I see. Mr. Krakken. It says Mr XXXXXXXX in your file for some reason. I'll have to correct that."

"..."

He then explains that there is a state law that requires a childhood history from someone other than the person being diagnosed.

I explained that my official childhood history is null and void due to interference from my parents and that I have no old grades. My parents would not be part of my diagnosis and have AS traits themselves which they deny. My history began at 18 instead of ending there because that's when I moved away. I also told him about how my parents turned on me with personal attacks after I was diagnosed as dyslexic in college. They had already known but were ashamed and said nothing, and thought it was better to make me doubt myself than to know the truth. He says that he'll talk to his boss about it. He calls back later and says his boss has approved my intake (still no news on the test though) and that the confusing lady that I talked to would call back to set up an appointment.

On a side rant
Why would you hire someone who is such a bad communicator to be the point of contact for a population of bad communicators. Shouldn't they have hired someone who is super on point?

Krakken, what I said yesterday about sensory issues, intense intellectual interests, patchy social skills, stimming, this is my own description of Spectrum traits. This is not DSM-4, and I should be clear about that. DSM seems to primarily focus on social skills and observational / attention skills, like the idea that it's really bad to focus on part of an object rather than the whole. DSM reduces the importance of sensory issues to just one or two sentences. I think they're missing out, but regardless of what I think, that's where DSM is currently at.

And DSM also focuses on level of impairment, which I think opens the door really wide for the "judgment" of the psychologist. If someone is a successful rock star or a successful doctor, and if they have sensory issues, patchy social skills, etc, why can't they be on the Asperger's-Autism Spectrum? I think they can. If luck or support from family and friends or the overall social environment had been different, they may have been the same person just living in a garage apartment. Susan Boyle has recently shared that she has Asperger's, so I'm going to count her as an example of a rock star on the Spectrum (and probably not the only one). And in Temple Grandin's book, "Different . . . Not Less," one of the people she profiles is a medical doctor (and probably not the only one).

Oh, your side rant, that's almost too good. Why would they hire such a poor communicator for a communications job?! Paradoxically, surprisingly, perhaps for that very reason. That they'd much rather have someone who stonewalls and buffs people off, than someone who creates 'extra work.'

I hope you find someone there who gives you a reasonable hearing.

I'm self-diagnosed and am comfortable that way. What the Asperger's-Autism Spectrum gives to me is kind of a conceptual whole which explains much of my life better than anything else, both the parts which go well and the parts I damn well want to go better.

Eventually, I think we're going to have to take a page from LGBT groups and run our own social agencies.

I went to an ASPIE meeting today. It was a definite eye opener. It seems like AS-lite compared to some of the people there. Most of the group were parents of AS children but there were a few twenty somethings there that I could relate to. There was also black woman there who talked about how she met her black husband with AS, and even though his traits are more pronounced than mine I could relate. I also met someone who does diagnosis and therapy so I'll see if I can use his services. He and I talked so long that we were pretty much kicked out of the church because it was getting late.

I had a pleasant surprise today. The bureaucracy turned against itself and and what was expected to be a 90 minute eligibility interview turned into an all day diagnosis. I should have the official paperwork in a couple of weeks.

I got my documentation today!

You must be relieved, please tell us how the rest of it goes. My story is very similar to yours and I think I just got really lucky in a referral for the diagnosis, but so far State aid/services are woefully out of reach for me, getting bounced between different agencies, approved for treatments for my AS that aren't covered by me lacking Medicaid, etc. OMG I work part-time now at a fairly low wage, not minimum, but low-- I get substantial financial help thankfully from my parents. This Obamacare insurance has only gotten more and more expensive each year, I can't even pay for it with the subsidies to get that treatment I was approved for, yada yada man... in the loop for expanding medicaid, can't come soon enough...


It's funny because my clinical psychologist at the time handed me that precious documentation like it was the Golden Ticket to everything... only to later find out I have to be on SSI to get medicaid, on medicaid to get SSI or something I can't figure out I was denied for SSDI outright due to how well I filled in the forms (f**k being highly verbal sometimes).

Hopefully that documentation gets you what you need. Please let us know what happens.

Now they've got me doing more testing. Beware of what you wish for.