Asperger's Rant







I may be preaching to the converted, but when you hear about ADHD and Asperger's Syndrome, for example, do not assume that person is putting it on. That it's a made up disease for the bludgers in life. These two disabilities among others, are difficult to talk about and to identify because they don't come with obvious physical deformities, like blindness. People can assume it is a catch-all description for the people who don't fit, who are a little more nerdy than the rest, who have some social skills difficulties.Don't believe it! There has to be serious inability to cope before these diagnoses are used.

I've had this thrown at me because most of the time I manage reasonably well, and manage to exit the situation before I've done too much. So people don't see how quickly I can go downhill and suddenly everything is like dragging a bus up a hill, or suddenly every sense is scrambled and I can't make my brain work. 
Even small activities like deciding how to cook the dinner, which dish to cook first, all the steps that are required and in what order can be like trying to remember Pi to 13 places!
At the same time as your brain is scrambled so you can't organise yourself, all the noises seem too loud and screeching right into your brain, smells make you nauseous, everything and everyone seems too close and crowding.
Your pulse elevates, obviously, your muscles tense, and if like me you hold your tension in certain places, your neck muscles cause a headache and your stomach muscles cause nausea and heartburn. Your hands become shaky, and you start to rock and pace, trying to decide which activity to do first, but it all just see-saws in your head.
And finally, the piece de resistance, you start yelling or crying, or both, and you can't stop! Until some time after you are removed from the situation.

So when I tell receptionists who ask if I have a disability, yes I have Aspergers. It's because when I come to their clinic, I might be having a great day and sail through it like most people, or I could suddenly become a quivering mess that they can't get rid of, and don't know how to treat. I usually awkwardly pay with tears running down my face and rush off to my car, where I ring my hubby to talk me down before I get on the road and cause a crash!

I've overheard people say...I don't really go along with all that Aspergers or ADD stuff, as if we are being attention seekers that have somehow made it all up. I want to scream at them, but I usually let it pass because telling them how it is, is likely to set me up for unwittingly demonstrating it for them as I become overloaded.

I know other non-visible illnesses/syndromes/disabilities suffer with this disbelief, think back to conversations about bad backs, fibromyalgia, chronic fatigue, carpal tunnel etc. Maybe there are a few malingerers out there, but the vast majority of us are suffering and have been suffering often blindly our whole lives.  We've been chasing answers, while you gifted able-bodied people have blithely accepted your ability to be whole and make your way without too much thought and calculation. 
So if you happen to meet one of our invisibly disabled clan, please give them the benefit of the doubt and know that we really know what we are talking about!

End of rant!


3 comments:

  1. I sure do share this frustration. Invisible disabilities are not easy and I sometimes wish I had a limp or a cane or some sort of visible sign. I have burst into tears over my inability to make my brain work, and what really confuses people is that what is most challenging for me is something really formulaic and routine. I could hold a really deep philosophical conversation and at the same time be incapable of filling out a form or following some sort of procedure. It makes me feel embarrassed like I'm an idiot and of course people can't understand it. I often run on adrenaline so I seem energetic, perky and cheerful. It is my nature to be so but I don't always have the energy and strength to be myself. Sometimes I dig into those extra reserves and am left exhausted and barely functioning the next day.
    While my condition is not the same as yours, I think I really do understand some of what you experience. I have also worked with individuals in various places on the spectrum when I was a teacher. It really helps to have people in your life who understand even if it's just a few of them.
    xo

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    1. Oh Shawna, I'm sorry you understand! Yes I think brain overload for whatever reason is similar. I think in the future they will find more links between conditions like ADD,autism, Tourette's, OCD etc. they often run parallel. I also run on adrenalin due to my loud personality, and can often make my situation worse because I like to join in and be in the thick of things. If only I could be content to sit quietly :-) but I find that road leads to depression. So at the moment, I'm on one day on and one day off to recover. This is a vast improvement to last year this time, where I wasn't having any relief from overload at all! So now I'm on antidepressants which enable me to do the basics...for which I'm VERY grateful :-)

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  2. We can't take those basics for granted! I try to focus on the things that I can do instead of the things I cannot. I think that because I am not someone who wants to be in the thick of things it really wears me out when I feel compelled to fake it. I'm a decent actress and can fake some extroversion for awhile but at a cost. I do like some sort of social life though, some activity and human contact. I'm just more likely to think a very deep philosophical chat one on one is a great time and I will still need a day to recover from it. Or two days. I need a day to recover from doing the grocery shopping. I have both physical and mental limits. You can imagine why I can no longer teach!
    Yes, the link between the conditions is called co-morbidity which is a rather unappealing term. My son has ADD (non-hyper kind) along with Tourettes and severe anxiety. I recall at least one doctor suggested he is probably on the spectrum somwhere but I also think that in as much as these conditions can overlap they can also mimic each other. I have mild anxiety, helped with meds, mild Tourettes too. I don't seem to be OCD or ADD/ADHD. The CFS/ME which I have is a neurological illness so it kind of wreaks havoc with the whole body. I'm probably telling you a ton of stuff you already know. Anyhow, I just want you to know that to some degree I get it. :-)

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If a topic has special significance for you, or touches you in some way, I'd love to hear your story! I will return the favour and we will gently touch hands across the miles...or kilometres :-)