SSDI Hearing Update

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Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.

Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).

I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.

Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).

Denied Access to Mental Health Records

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I found out recently that my Social Security Disability (SSDI) hearing has been set for February 2019. When I found this out, I contacted my attorney’s office to ask for a copy of my medical records since I honestly don’t even know what all is in them other than what my doctors have told me and what little is available on the online portals. I was rather shocked when they told me that they could give me the physical health records, but it is a HIPAA violation to allow me to see my complete mental health records.

To be honest, this bothered me. I’m not allowed to see some of my own mental health records? This doesn’t seem right to me. Maybe I could understand if I were violent or a real danger to others and they feared me getting pissed at what the doctors wrote and trying to harm them or something, but the closest I’ve ever come to violence is just having a meltdown and yelling at someone because I was overwhelmed (normally this has only happened at work places when I was put under a lot of pressure). Even yelling is pretty rare for me though. I am much more likely to just burst into tears, lock myself in the bathroom, or try to get away from the situation by finding another “safe” area where I can be alone.

Am I alone in being frustrated by the seemingly patronizing system hiding my own truth from me? Who else deserves to know my doctors’ real, honest perception of me more than myself? I’m not a child. I can handle knowing what my doctors really think of me and maybe knowing those things would help me in my own personal growth.

Fundamentally Alone, but Craving Understanding

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The past week or so has been rough on me mentally. I’ve had way too many weepy days where I would cry for seemingly no good reason. Several times I had anxiety/frustration meltdowns. You could argue about whether they were “autistic meltdowns” or “bipolar meltdowns”, but at the end of the day, does the label really matter? What matters is the suffering and finding a way to get through it.

I’ve been upset partially because I feel misunderstood by everyone, including my therapist. Mental health professionals in my experience are generally kind, caring people who truly try to understand, but I think some things can’t truly be understood unless experienced personally. Unless someone has experienced the same level of trauma throughout their childhood and adulthood, been blessed and cursed with Asperger’s and Bipolar, been dealt the same personality and experiences, and developed the same chronic physical conditions, they probably can’t relate exactly to my plight….anymore than I can relate exactly to theirs.

In the end it often feels like we are all fundamentally alone in our experience of the world, even though we desperately want to feel connected and understood. Fortunately, we can connect with others through some aspects of our experience, so perhaps that is what needs to be focused on. It is easy to feel completely separate and different from everyone else. At a base level, it is true for all of us, but that doesn’t mean we should quit trying to reach out. And so, I continue to write and seek out common ground with others, both online and in person. Quite frankly, I’m not sure what else to do.

Autistic meltdowns…adult style

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Probably any parent of a child with autism will tell you that meltdowns suck. I agree, even though I am coming from a different viewpoint, that of the person having the meltdown. If you met me and got to know me as a casual acquaintance or even a relatively close friend, you would probably think I am a fairly calm, low key, easy-going kind of person. And most of the time I am (although those who know me best can attest that there are a lot of emotions under the surface that most people just don’t see). However, even though I am not proud or eager to admit it, I do still have occasional autistic meltdowns.

The funny thing about autistic meltdowns is that they can occur over seemingly ridiculous things or over obvious stressors. For instance, I had a meltdown today. I know that it had actually been building for a couple days because of some major stressors going on this week. Yesterday I was a sobbing, depressed mess. I walked around like the living dead, wishing that I could just hole up somewhere and hibernate for a while. Today, things kind of came to a head when I was doing a puzzle to try to relax and couldn’t get the pieces to fit quite right. In my head I heard myself say, “you should get up and leave right now before you lose it”, but of course I didn’t listen to my wiser self. I kept trying to make the pieces fit, getting more frustrated by the moment. Eventually, I slammed my hand down on the table (which hurt like heck), tore the puzzle apart and then threw the pieces all over the room. Not exactly mature I know. Then I burst into tears when my husband heard the ruckus and came to see if I was ok. Of course, none of this really had anything to do with the puzzle.

When I was a kid, meltdowns were worse in many ways. I would sob so uncontrollably I would start to hyperventilate. No matter how hard I tried to calm myself down, I couldn’t until it was over. I would also often scream at people who made me mad and if they didn’t live with me, I would throw them off my property. Not the nicest I know and I’m sure glad at least I did outgrow that! By my teen years I had calmed down some and didn’t have as many meltdowns. The ones I remember most during those years were related to Algebra. I was not good at Algebra – in fact, I hated it. Partly because I saw absolutely no point in learning it (and still don’t honestly). When I would get really frustrated with my algebra homework I would often throw the textbook on the floor and stomp on it over and over or just throw it around the room. That kind of makes me laugh now, but back then it wasn’t funny, it was incredibly frustrating.

Luckily, as an adult, the meltdowns have become relatively rare. However, it does still happen if all of the stars align just right, bringing the wrong circumstances together at the wrong time. Luckily I never have been (and hope I never will be) physically violent. When I do have these occasional meltdowns, I can see why Asperger’s is often misdiagnosed as bipolar or some other kind of mood disorder. Having an older sister and a mother who are bipolar, I have seen that there can be many similarities between bipolar meltdowns and high-functioning autistic meltdowns. I consider myself lucky that I don’t have meltdowns as frequently as my bipolar relatives though.

Unfortunately, I think meltdowns will likely always be a part of the autistic life, but I do want to give both parents and high-functioning autistic kids some hope by saying they do sometimes get better and less frequent with age. Of course, it is important to remember that all autistic people are different and meltdowns can manifest in many different forms and can range from mild to severe. Often I don’t even know at first what is triggering a meltdown, but it is usually a lot more than what is happening on the surface. I know that my husband will probably never understand why I seem to have meltdowns over things like not being able to do a pilates exercise the right way or because I can’t figure out how to change the color of something on my laptop…but that is just me. It is a part of who I am rather I like it or not, so I guess I might as well accept it and learn to deal with it. Luckily, I receive a lot of love and understanding when dealing with these issues. I wish the same was true for every autistic person, because that support can make a world of difference.