30 things I have learned from 30 years living with Aspergers

Hello to all my readers. I apologise for not blogging as regularly recently-settling into life as a married woman means I am very busy a lot of the time. I also turned 30 this past Monday so have been busy celebrating that. To coincide with turning 30, I thought I would do a blog post detailing 30 things I have learned from 30 years living with Aspergers. As I always say, this list may not be applicable to every person with the diagnosis as we are all individuals-this is based purely on my personal experience. It’s intended to be a bit of fun so hope everyone takes it in the spirit that’s intended.

1. Living with Aspergers is an emotional roller coaster-so many highs and lows, but the best thing is just to accept your life for what it is. Trying to improve your life is never a bad thing but work with what you’ve got to do that, rather than just hoping one day the Aspergers won’t be there.

2. Your friends and relatives can set their watch by your little routines.

3. Talking of watches, you are always early to every appointment and social engagement you have as you hate being late for anything and so take great lengths to ensure that doesn’t happen. (I know some people on the spectrum can struggle with time keeping due to executive functioning issues-I’m not one of them).

4. Social rules keep changing and, as an adult, it’s a lot harder to get away with making social mistakes than it was when you were a kid.

5. These days, a lot of people think they know what Aspergers entails (largely through media exposure) but have the wrong impression or idea when it comes to you personally. Try not to be offended-instead use the opportunity to raise awareness and educate them into what Aspergers is like for you.

6. You may as well save some time and not even take a menu in a restaurant as you know exactly what you are going to have there but you end up glancing through the menu every time anyway only to choose exactly the same meal you’ve chosen for the last 10 years every time you eat at this restaurant.

7. A lot of people, including a worrying number of professionals, seem to believe that, once you turn 18, your condition suddenly disappears and you go from being a child who needs a lot of support to being an adult who needs no support at all despite having a whole different set of issues to cope with. This is very frustrating and has ended up being very harmful towards some people on the spectrum, particularly with PIP being declined in a lot of cases. This is one aspect of ignorance that I find so hard to change because so many people still think of autism as a childhood condition.

8. Traits which often lead to bullying in your school years, such as being hard working and eager to please, are well respected in the workplace. (That said, the employment statistics for autistic adults are dire-I have come across an extremely high number of people on the spectrum who are perfectly capable of working but are not given the chance which really upsets me because we, as a community, deserve more. I have been lucky enough to find a career in an industry I thrive in but I know that a lot of other people on the spectrum are not as fortunate. Hopefully, in time, things will change).

9. You seem to have a special affinity with animals.

10. You have odd little habits that most people don’t understand but that you rely on to feel secure. One of mine is watching TV with the subtitles on. I don’t need to have them on as my hearing is fine but, for the past 20 years, I have needed them on to make me feel secure. It’s really hard to explain but I know that a lot of other people with Aspergers have similar sorts of comforts.

11. Clothing was never designed with us in mind. Labels feel like sandpaper against your skin and certain textures lead to frenzied itching (wool is the main one for me). Most people on the spectrum dress for comfort, not style, hence why most of us are never going to win any style awards!

12. Certain sensations that don’t seem to phase other people are such an issue for you that you do anything to avoid them. One chief example for me is static electricity. The thought of receiving a static shock is so distressing to me that I will roll my coat over my hand before I touch the handrail of an escalator or open a car door because these have given me static shocks in the past. I will also avoid unfolding any item of clothing that’s just come out of the dryer and has static properties. I recently received a static shock from an escalator in a busy London railway station and spent 10 minutes looking for a lift so I wouldn’t have to step on the escalator again (there wasn’t one so I ended up having to go back on the escalator after a couple of “false starts” because I was so worried about getting another static shock!)

13. Everyone wants you on their quiz team at the pub quiz because you’re great at knowing the small details that most other people overlook because they find them boring.

14. You get so fed up when people accuse you of not having empathy because you are actually highly sensitive and emotional.

15. You don’t understand how anybody could find clubbing a fun night out as it’s far too overwhelming for your senses. You’d rather a nice meal in a curry house any day!

16. You love a bit of repetition! Whether it’s a certain episode or scene from your favourite TV show or a certain song, you have no qualms with watching/listening to it 500 times in a row!

17. You realise who your true friends are when you’re in meltdown mode in front of them.

18. You are always accused of being too open but you don’t know any other way to be.

19. Your inner thermostat never matches with the weather. It can be the middle of summer and you feel the need to wear a coat or it could be the middle of winter and you get your shorts and T shirt out!

20. Your family, friends, teachers and work colleagues recognise your handwriting anywhere because it’s so unique, to put it politely!

21. You’ve always seen clapping or jumping as a legitimate expression of excitement or happiness and don’t understand why so many people can’t understand this!

22. Textures of food items are more of an issue than how they taste when it comes to whether you can eat them without gagging.

23. You don’t understand why people see obsessions as a bad thing when they have brought you so much happiness over the years.

24. It’s hard to try new things but, once you do, you continually amaze yourself with how you can adapt to your new circumstances and how strong you are.

25. A lot of people have low expectations for you and you are continually proving people wrong.

26. You are so disorganised and continually misplace or lose your personal possessions but seem to be able to find other people’s lost possessions with ease.

27. You wonder constantly how you managed to get to adulthood with such non existent observation skills.

28. You know that the friends who stick by you are special and you would do anything for them. We’re not the easiest people to be friends with a lot of the time so those who remain friends with us are life’s decent people.

29. A lot of people won’t ever understand you or have the will to try-those who do understand us are the ones we need to keep in our lives. It makes life so much easier than constantly trying to explain yourself to someone who will never understand you.

30. Finally, despite all the negatives, you wouldn’t change who you are for the world because you have a great life.

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Isolating Aspergers versus accepting Aspergers

In my years of living with Aspergers, I have come across a plethora of attitudes towards the condition, both from people on the spectrum and others who have varying levels of experience with the condition. One aspect of attitude towards Aspergers is whether or not you isolate it or accept it as part of you/the person with Aspergers you know. Isolating it is a term I use, rather than a generally recognised one. What I am referring to is treating Aspergers as a separate entity, something that can easily be distinguished from one’s personality and, as a consequence, usually something that is easy to blame when things go wrong.

I am the first to admit that, depending on my mood, I swing between isolating Aspergers and accepting Aspergers. During a highly emotionally charged meltdown, I once even posted on Facebook that, if my Aspergers was a person, I would punch it in the face. However, once I had calmed down the next morning, I could see that this strength of feeling had been impulsive and provoked by the meltdown I had been in the midst of. The simple fact is that Aspergers is a significant part of who I am-always has been and always will be. Yes I sometimes wonder what I would be like if I didn’t have the condition but, as I have gotten older, that has decreased a lot because I realise that it is a somewhat pointless exercise because, no matter how many hours I sit there wondering how different I would be if I didn’t have Aspergers, my neurological makeup and the way my brain is wired is not going to change. It influences the way I think and the way I perceive language every day which is why I consider it a significant part of my life and why, when I am emotionally stable, I accept it.

I often find that accepting it is the happiest option. When you can accept Aspergers as part of what makes you you, it becomes one less battle to fight. We have enough struggles in life without being constantly at war with our brains. I also think it’s important to remember that everybody faces their own issues and struggles in life, whether they are autistic or not. Try not to blame everything on Aspergers, which I have seen some desperately unhappy people do. I suppose that brings us to one main point in all of this-depression makes it so much harder to accept Aspergers as part of your life. I have often found that, when people list why they would want to be cured from their condition, the things they list are often associated with depression-an overwhelming sense of hopelessness and despair. Depression is something I would say, from experience, a lot of people on the spectrum struggle with. The world favours sociable people and most of us are not all that sociable. Plus we see the world differently and the way we view the world is not usually catered for. If it was, certain noises, sounds, smells and textures wouldn’t exist and it wouldn’t matter if people looked at you when they were talking to you or not. I have often found that, with other people on the spectrum I know, once the depression is under control, their outlook on Aspergers is much brighter. It’s the depression that needs to be treated.

Aspergers is not a monster or a demon. It is simply a different neurological makeup. It brings unique strengths as well as weaknesses. Yes, if I didn’t have it, I might be a bit more sociable and a bit less socially awkward but I might also have lost my ability to speed read, which I have always found to be a real strength. The truth of it is that I can’t tell what I would be like because Aspergers is so intertwined in my life that I can’t tell which aspects of my personality are down to Aspergers and which aspects I would always have had. What I guess I’m trying to say is does it really matter? I am not against self improvement but there is a difference between wanting to be the best you can be and the type of self hatred that I see all too often in the autistic community. I often find we bully ourselves more than anyone else has ever bullied us. Sometimes I find that evaluating the situation logically is the best way forward. Yes we have our issues but everyone does, whether autistic or not-their issues may be different but they still have their battles to deal with. Our lives would not suddenly be perfect if we woke up one day and our condition had vanished overnight. Everyone has little blips now and again but, if you feel like you hate your condition all the time, please seek help as it is most likely influenced by depressive thinking which DOES need treating. Remember the positives and remember your strengths-everybody is unique and the world needs all different types of minds.