The Catch-22 Of Being #ActuallyAutistic But Late-Diagnosed
There are two ways to get Social Security Disability Insurance (SSDI) benefits, more or less.
Accumulate enough of your own “work credits” before becoming too disabled to work, in essence having paid into the system enough to receive benefits.
Become disabled before the age of 22 and have benefits calculated based upon the “work credits” accumulated by a parent, a scenario in which you are considered a “disabled adult child”.
On the other hand, if you happen to be a late-diagnosed autistic person who during the previous three decades did your best to be an employed and employable adult, not knowing that there were actual, diagnosable reasons for your difficulty in achieving this goal, you most likely are shit out of luck.
Social Security will deny you on both counts.
Literally, you will have not worked enough to receive benefits based upon your own work history, but also will have worked too much to be considered having been disabled prior to the age of 22.
If you, your family, and the world around you all agreed, for all those decades, that you were “normal” but for some reason were just some sort of failure or fuck-up that couldn’t seem to get, or hold onto, a job, you kept trying and failing, over and over and over, because the “normal” thing to do was to get, and keep, a job. In the process — because you didn’t know, for all those decades, that you could have lived a life in which you, your family, and the world around you instead knew there was a diagnosis out there which explained so many things, one the having of which might have meant being able to insist upon ways to both accomodate and mitigate those things — in reality you were subjecting yourself to stresses and pressures and environments that likely added to your long-term problems and mental health issues.
So while you were technically disabled from birth, you didn’t know that, and you kept trying to do the same things everyone else did effortlessly, and trying to do them in the same ways in which everyone else did. You effectively and essentially hurt yourself, over and over, for decades.
Decades later, you have a diagnosis. There are, and were, reasons for so many of the difficulties experienced along that border between you and the outside world. But as far as Social Security is concerned, none of that matters. The fact that you hurt yourself for decades trying and failing to be what you weren’t, that doesn’t matter. The fact that you in some ways made your disability worse because you didn’t know it was there, and so acted like it didn’t exist, that doesn’t matter.
All that matters is that you did not work enough to receive benefits based upon your own work history, and also worked too much to be considered disabled before the age of 22.
If I can step back and be a bit meta: I know this post is disjointed. I know it’s terribly-written. I know it’s not clean. Today turned into shit (and not even because of what this post is about), and I don’t really care.
I know, also, that there’s nothing to be done about any of this.
My process of applying for SSI (which is paid out of general approproations, rather than tied to work history as with SSDI) continues, but the prospect of SSDI, and it’s potentially higher level of benefits, is dead.
However, once the official, written denial of my SSDI claim to be considered as a “disabled adult child” arrives, I am going to appeal that decision. Not for reconsideration, but simply in order to get Social Security to sign off on the above description of my circumstances as being substantively correct.
I just want them to admit to it. I want their official admission that this ridiculous, harmful irony indeed is the inevitable result of their purely mathematical policy.
Well, no. That’s not all I want.
I also want them to approve my SSI claim.
Here’s the thing about all of this that ultimately bothers me.
If I had been born, say, with some sort of muscle disease but didn’t know it until I was 46, and prior to that eventual diagnosis I was employed now and then, which was making it worse because I was working without knowing I should be seeking various accommodations for a disability, and did this until it laid me out, would Social Security still have decided that I’d not worked enough for SSDI, but also worked too much to be considered disabled before age 22 and so also not eligible under a parent?
The answer to that might very well have been the same, but it seems to me mildly barbarous for the official Social Security policy position to be, “If you didn’t know you were disabled so you spent your adulthood trying to be ‘normal’ but ‘failing’, you screwed yourself out of financial support both ways.”
Worse, I keep coming back to this piece and feeling like I got screwed by being a totally useless amount of autistic.
Either I should have been more autistic so it would have been obvious and my life would have been able to address it, or I should have been less autistic, so it might have not unknowingly, beg your pardon, fucked me.
That’s me, feeling mediocre all over, even when it comes to being actually autistic.