How is AS not a disability when meltdowns are debilitating?

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I need some help understanding how others deal with the more negative traits of AS, specifically the meltdowns.

I'm recently going through the whole processes of learning about AS, started speaking to a councilor, and am currently working on getting a diagnoses. Sometimes I'm still in denial about being on the spectrum but no matter what a diagnoses would say, so many of the traits still apply... I've started to accept that AS does not make me defective, bad/faulty, and certainly not ret*d (it was tough getting over that stigma and still is sometimes). I'm working hard on looking at AS typical differences as positives -- dedicated, perceptive, intelligent, borderline superhuman senses -- you guys know the rest... but after a lot of "deep soul searching" from therapy and ranting at a friend, I've gone into almost a depressive state.

I told my therapist that I don't see it as a defect and I'm not obsessing over whether or not it applies to me (I was reading/watching everything I could find about it and extremely anxious to the point it was becoming debilitating). She was glad that I was taking a new outlook, and I am to a degree, but frankly I think I've just burned out. I'm sad and depressed; I've read so much about it it's all becoming jumbled in my head; and I realized that getting diagnosed might give me answers, but it's not going to change anything about who I am now. I don't really feel anything other than tired and a bit defeated.

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Promise I'm getting to my point of why I'm asking for advice after one more long explination. I started trying to think about why AS isn't so bad but after a long 2 weeks... I kinda freaked. Between therapy (some of the stuff hit pretty hard lately), flying home to visit relatives (which was extremely exhausting and I got no time alone other than sleeping), flying home only to have a late night fixing my car and filling out forms that were needed the next day (totally forgot to do those during my trip), having an early morning therapy session (that I had to ask to be able to come into work late for), going straight to work, dealing with random people interrupting my work and routine including one guy literally trying to get in my face when I had to leave work early so I could get to a doctors appointment (another awkward email to my boss). I think the guy was just trying to say hello (I think I met him once but honestly was looking at my phone's calendar and booking it home to get ready for my appointment I didn't even notice his face) but I was so tired and annoyed by then that it just put me on edge.

I was alright until the doctors appointment... I went in for a basic dermatology appointment to make sure there was no cancer concerns (there wasn't, but better safe than sorry, right?). It's a new doctor who I think I really like, but when she pried out of me that I haven't had a physical since before highschool she went into DOCTOR mode and started telling me how we'll schedule a full physical and all the... *ehem* lady testing that I never got done...

Woah! Woah! Woah! Pump the brakes, alright???? I can hardly tolerate being touched, don't know why, maybe it's an AS thing. I have a real, physical aversion to it but I could tolerate her briefly putting an otoscope up to my arm. Being told they were gonna schedule a full body check (without actually asking me) put my brain into overdrive! I told her I knew she was right and it's smart to get everything checked, but... well, I didn't really have a good "but" other than panicking and looking around the room. She said we could do the blood test now and get it over with... it was PHYSICALLY PAINFUL to say "yes." She booked it outta there before I changed my mind and told me the nurse would be in in a few so I waited, propped up on a freaky chair pedestal in a freaky small office... I couldn't do it, at least not like that. I was shaking so hard I almost cried and could tell a full-blown teething-toddler meltdown was about to happen, so I jumped down and sat by my purse on a regular waiting chair pushed in the corner of the room behind the privacy curtain. I needed my feet to touch the ground and I needed to feel safer... which apparently meant backing myself into a literal corner. I'll skip how it went but basically I really liked the nurse, we talked about tattoos, and she was totally okay with me spazzing while she took my blood, but the whole time I was apologizing because I couldn't stop shaking, literally wanted to punt her outta of the way and make a break for the door when the needle came up by my arm, and basically slammed my eyes shut and twisted my head as far to the side away from it as possible... all why suddenly rambling about the last time I had blood drawn. She dealt with me like a champ and then told me all about the patients that were more difficult. I felt a little better from that. The nurse checked if I could leave and I heard the doc in another room say I could and I needed them to schedule another appointment. I went out to talk to the receptionist and after fidgeting while she set it up I told her honestly didn't think I could handle the "lady specific" aspects and if I could decide later if I wanted to do it. She was super sympathetic and told me she would put me down for a basic physical and I could decide the day I go in if I wanted the rest. I was so overwhelmed I drove home in a daze and immediately texted my friend a rant about the .5 second long horror of being stabbed and that turned into a rant about how tired I am of people touching me. And talking to me. And just in general not letting me be alone or when at work to let me do my job in peace. 4 days later and I'm still in full [fight or] flight-mode about the prospect of being touched in any capacity at the future appointment (plus a bunch of other aspects that checkups include that are "triggering," but this post is long enough).

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So there's the whole story. I've had a few moments in the past few months where I literally wanted to throw a child-like temper tantrum -- just pure screaming, flailing, and banging my fists -- but I don't because I'm an adult, dangit! Guess I needed to rant about that visit more than I thought... But that's just it, even if I can see the good parts of AS, the stuff that makes us special, and can learn and adapt to the rest of the world just like all those inspiring people in all of the TED talks, how do I deal with those freakouts when I get overwhelmed?

I've read the tips people have to cope better but sometimes you can't go and sit in another room by yourself for an indefinite amount of time rocking back and forth, especially if the issue is something like a doctors visit... you gotta let them do their job or just not go in at all. Or when out in the real world or going to work, you can't just freak out every time someone says something to you (especially if they know you) or if someone else has to do their job and it inconveniences yours. But that's how it feels, like a toddler-tantrum. No matter how good I start feeling about AS as a possible diagnoses, or learning to cope with all the other aspects, overloading like that just takes it back into the "disability" category.

So how do you guys cope? Or do you just think about the meltdowns from a different perspective? I need help because containing these freak-outs are making the emotions build up. This time it resulted in burn-out but only because I managed to suppress the actual "explosion"... next time I might not be as lucky and eventually I'm gonna burn-out trying to suppress them. I know how to disassociate to a degree but I don't think that's the right answer either... if I do it too much I tend to have trouble remember which parts are reality and which parts are in my head so while I'd appreciate any amount of sympathy I can get, I need some real "Here's how I overcame it" advice.

Please and thank you.

I cope simply by not having them. Meltdown comes from overload and a lack of understanding of a neurotypical situation. I haven't had anything that resembles what others describe as a "meltdown" on these forums since i was a child.

Also, "meltdowns" are NOT part of the diagnosis. It's an individual trait.

Asperger's by itself is not a disability. The meltdowns could be part of post-traumatic stress disorder, which could no doubt come with the package.

You'll want to simply write down the things that happen, as simple as possible, and avoid "self-diagnosing" when you are with a doctor. Let them put it all together, and keep in mind that most doctors are neurotypical. It's like pulling a lever on a slot machine, and then you see what diagnoses each doctor will give you.

Once you get lucky, and a doctor puts it in writing, then you have something to take to the disability office. I know this because I am about to be going for disability myself.

In the UK, autistic spectrum disorders (including asperger's) are classed as a disability.

Genuinely, thank you guys for the replies, but none of them answer the question.

@Ichinin, that's really great that you don't have that issue. : ) But "simply not having them" really isn't something I, and I think most people, can control. Normally I'm fairly good at staying calm and taking-in situations in a logical fashion, but when all of the normal overwhelming stimuli is combined with an invasion of my physical, personal boundaries, it's too much (meltdowns are VERY rare for me, which is why I find that behavior so unacceptable in a public environment and am asking for feedback).

For all the comments, I'm not talking about using "meltdowns" to diagnose AS or to use as evidence so I can be put on disability. Whether it turns out I have AS or not doesn't change the fact that the "overloads" are real and debilitating, which is why I'm asking for those that do deal with them to share their strategies for coping. : )

Real, "here's how I overcame it" advice.

I had a LOT of meltdowns when I was younger. What forced me to get control of my meltdowns was finding out I'd broken people's bones or left bruises all over their bodies. I knew I didn't want to keep hurting people, especially not the ones who were trying the hardest to help me, so I had to find some way to stop myself from getting into that fight or flight mode around people.

Step 1--Learn how to tell when you're on the brink of a meltdown, and remove yourself to a safe location without people when it happens. At this stage, I still hurt people when I wasn't able to get away or my lizard brain perceived them as being between me and my exit. If you can, try to start thinking of exit plans before you go anywhere, and notify your friends of those plans if needed.

Step 2--Learn how to shut down your body and go into "freeze" mode instead of fighting or fleeing when you can't remove yourself from the situation. When I'm at the point where I know I'm going to have a meltdown and I'm around people, I crouch down on the ground, put my arms over my head, and scream bloody murder. It still sucks, but I'm not hurting anyone, and it gives me some amount of control. People also usually figure out that they shouldn't touch me when this happens.

Step 3--Get very aware and specific about what kinds of situations are likely to push you into a meltdown. Learn to modulate your exposure to those types of situations. That means that if you know you'll have a doctor's appointment and you know that dealing with the touch is painful for you, don't do anything else that day that you know might stress you out (like going out in public where people might talk to you or something). Again, make sure you've got your exit plans.

Step 4--Once you've got a good idea of what situations are harder on you and WHY they are hard for you, you can start to slowly push your limits in controlled ways. This is one of those areas where you've got to be careful, but you're never going to make real progress unless you hurt yourself a little. If being touched is difficult for you, try letting a friend touch you once or twice so that you can start to desensitize yourself to the touch. If being in loud areas hurts you, find a moderately loud area and stay there for a couple minutes and then leave. More importantly, practice being able to SPEAK and explain to people that you're uncomfortable in these situations.

Step 5--When you're in situations that cause you a lot of anxiety, learn to postpone your freakout for later. This is something I'll do. If I'm at work and I'm very upset and want to hide under the table or run away or something, I'll tell myself that I can freak out when I get home, but right now I need to get my job done without hurting anyone or doing anything that could get me fired. Now that I'm able to control my behavior to an extent in situations that are painful to me, I'm able to wait until it's safe to release that energy. Try not to put yourself into these situations too often, but when they do come up, know that you can always have your meltdown when you get home.

This is a slow process, and it's just what worked for me--your plan might need some tweaking for it to work for you. Occupational therapy can also help you desensitize yourself to certain stimuli and give you other coping strategies, like ways to touch yourself that'll calm you down after someone else has touched you.

It may also help you to find ways to "reset" your senses when you're at home. I like showers and wrapping myself up tightly in blankets and listening to music and having all the lights off, but there may be other things that work better for you. Sometimes reading a book or playing a video game (one that DOESN'T cause too much stress!) can also help distract me from my body so I can calm down. The closer you're able to get to zero on your overstimulation meter, the less likely you are to overflow when you're in situations that DO hurt you.

I'm not saying that you should be able to control them, i'm saying that you were generalising and attributing "meltdowns" symptoms to everyone in the autism spectrum community. Everyone does not have them.

Jerigirl, it's a very tough question. The BLUNT answer is because society at large wants to keep AS people from getting any benefit because they find the meltdowns to be "offensive" in some manner? Really I think it's just that the bullies hate seeing us stand up for ourselves in any way, and a meltdown is a form of standing up for yourself. You may even find that the worst case scenario is not that bad - the police get called, the police take you to a psych ward (which is a lot cheaper than an ambulance) but, again - we're not encouraged to give blunt answers here.

@John 35 Alabama, that is an interesting way to think of it... I'll be sure to keep that in mind; that really the consequences might not be as horrible as expected, though I can't say a psych ward sounds too appealing! Generally, I'm only concerned about having a meltdown when other people aren't being antagonizing, so I wouldn't necessarily say it's a situation where I feel I need to stand up for myself. If someone was intentionally crossing boundaries, I don't think I would feel so bad about freaking out at them.

@Inchinin, I didn't realize it came off as though I was implying that. I know not everyone deals with meltdowns but that many people in the community do deal with them. My apologies for the confusion. As my question is regarding how everyone who does deal with meltdowns manages to handle them, I only intended those people who have experience making their meltdowns less debilitating to reply.

@nomral, thank you for the advice! That's exactly what I was looking for. Luckily I've managed to keep myself from physically lashing out, but honestly I didn't really think about how much another person would get hurt if I did. Though I think you're completely right... when you put it like that, crouching down and screaming definitely is a better response! It sounds like you've had a lot of practice figuring out what works for you and at the root of it, all of your tips circle around mentally prepping for what's ahead, which is definitely something I think I can work on. Thank you again!

I think, for me personally, learning to stop viewing AS as a disability will only come from learning how to manage and work around the negative traits such as meltdowns, but without knowing what techniques to even try, it can feel a bit hopeless. With such a large community I'm sure everyone has their own tricks, so hearing everyone's own experiences really helps.