This past February, I finally sat down to take another stab at filing for disability benefits. I’d originally done so, and been denied, back in 2018 after my vocational rehabilitation job placement spectacularly blew up in my psychological face.

At that time, I didn’t pursue an appeal beyond the initial request for reconsideration because I just didn’t have the wherewithal or the stamina to deal, given the degree to which that job placement and then the consultive exam for disability determination services combined to put me out of sorts.

I didn’t want to try again until I was in therapy on a regular basis and continuing both there and on my own, often here in public on the blog, to work through my diagnoses. At the same time, I was putting energy into other medical issues such as a bladder diverticulum and then the sarcoidosis. Not to mention the global pandemic you might have heard about.

Recently I mentioned having hit the three-year mark with my current therapist, and that’s a fair part of why and how I was able to sit down earlier this year to submit a new disability filing. As part of preparing for that, I even arranged a conversation between my therapist and my primary care physician, so they each understood my work with the other.

At any rate, after considerable preparation over a few weeks, I decided that I would take each section of the application on its own terms and take however long a break I needed between each, even if that meant days.

What happened next is that fairly quickly after having completed only the initial introductory or intake portion of the application, I was denied summarily for non-medical reasons.

My response was rapid, complete, and coordinated: I filed a request for reconsideration and also completed and submitted the rest of the application itself on the same day in mid-March.

In one way this was helpful to my originally intended approach, because the initial application didn’t have a way to include supporting documentation whereas the request for reconsideration process did.

I’d long since assembled a document I called a “disability narrative” in order to provide context for and communicate clearly the realities of the fact that I was not diagnosed with autism until midlife. One challenge of my filing is that because I wasn’t diagnosed until that recent past, I’ve decades of employment history, albeit exceedingly spotty and intermittent. In addition, there’s no medical history on any of it until my diagnosis in 2016.

Someone on Reddit in fact had had success providing such a narrative document, and since these personal historical realities had a chain of successive lawyers not want to take my case, I had to put together, on my own, as strong an argument as possible in this second attempt.

(I’m compelled to note that one other difficulty regarding lawyers: none of them would let me first have a brief exchange through email, so that I’d have the context for either a phone call or an in-person meeting, something I’d explained that I really needed to do for the sake of my own brain. Given that this amounts to a disability accommodations request, you’d think that disability lawyers would be receptive. Alas, not so much.)

So, that was in mid-March, at which point, knowing that it’s fairly standard for things to take anywhere from three to six months at that stage, I put it out of my mind.

Except for one thing.

I’d first learned of the non-medical denial because I’d logged into my Social Security portal and saw it there. It was another week before the paper notice arrived in the mail. At that point and at one other, I’d come to learn that various steps of the process are shown in that portal.

Which is why, by the time three months had passed, I began to become concerned that my portal was not showing my request for reconsideration.

Today, as we reached the passage of six months since I’d completed the application and filed the request for reconsideration, which has remained missing from my portal, I called Social Security.

I’d meant to do this last week but amidst a lot of tricky resource management due in part because of a series of aches, pains, spasms, and tweaks in back, I could find or summon neither the spoons nor the tickets. It wasn’t until yesterday that I was able to sit down and make some notes to prepare myself for the possibilities during the call. This included some time productively catastrophizing, because that was the only way I’d have a chance in hell of self-regulating should the worst happen and someone tell me that they simply have no record of any of this.

(In retrospect, the looming phone call with Social Security also likely explains the inability to focus I had last night which resulted in me rewatching, again, The Martian, which is my go-to rewatch when I am in any way having difficulty self-regulating, be it in real-time or prospectively.)

In the end, what happened today was this: after a half an hour or so of the representative spending a lot of time reading something (I assume the Program Operations Manual System, or POMS), he put me on hold only to come back to ask when I’d submitted the request for reconsideration, at which point he said I was going to have to call my local office.

While this is not precisely the catastrophe for which I prepared myself, it feels pretty close to it. Or, at least, I didn’t leave the call feeling reassured.

My autistic brain being what it is, of course it wasn’t until maybe three minutes after I hung up that it occurred to me to ask him if he was even seeing the request in the system anywhere. Multitasking is not so much in any real way an autistic strength, especially when under pressure.

So, here we are.

Tomorrow I have to do this all again, this time with the local office. I’ve made some adjustments and amendments to my notes to reflect today’s conversation as well as the change in venue. At this point, in no way am I sanguine about things. My gut feeling is that if the request for reconsideration was at least present in the system, he’d have told me that.

I’m prepared, at this point, to hear the worst. I’m not at all prepared for how to manage my reaction if and when that happens.


  1. My first attempt at calling the local Portland office the next day went something like this.

    First, the end of the introductory message played over the start of the different message about what numbers to press for things. Then, a message told me that if all agents are busy, hold times could be as long as fifteen minutes. I laughed.

    Then, I was sent to on-hold music that sounded like it was being played from one 1970s landline handset to another that had been strapped to it with tape. Every now and then a message would play with the usual “we’ll get to you” sort of messages.

    Next, at around nineteen minutes, a message played to tell me they’d try again to connect me. After about thirty seconds of ringing, a message played to tell me that I should try again later, and then hung up on me.

    Nineteen minutes of the jankiest automated telephone system I’ve ever heard, only to be unceremoniously disconnected rather than keep me in the hold queue, forcing me to start all over again at the back of a new queue.

    Social Security is actively dropping calls rather than provide customer service.

  2. My second time at calling the local Portland office, immediately after the first, went exactly the same, although I did realize something new about what they’re doing.

    When you subtract the introductory messages, the amount of time I was actually in a hold queue until the system said it would try again to connect me, and then said goodbye and hung up on me, was fifteen minutes.

    So this is where they actually got the fifteen minute number: it’s how long they will allow you to stay on the line before dumping you. This is how they can claim a maximum hold time of fifteen minutes.