28 things I have learned from 28 years of living with Aspergers

I celebrated my 28th birthday on Friday (I feel so old!) so I thought a good idea for this blog post would be to post 28 things I have learned from living with Aspergers for 28 years.

1. Aspergers can cause mood swings and intense emotions that most people find difficult to understand.

2. We do have lots of empathy-we just don’t always display it in “normal” ways.

3. Despite Aspergers being commonly known as a milder form of autism, it can be just as frustrating and challenging to live with for people with the condition and their families as classic autism. “Milder” simply refers to the fact that Aspergers isn’t associated with severe learning disabilities the way classic autism is so people with Aspergers can intellectually learn and apply social skills in the way that many people with classic autism can’t (I hope this doesn’t cause offence-I am trying to explain it in the best way I can).

4. Following on from the previous point, not every person with Aspergers is a genius, despite what the popular media may portray.

5. Neither are we heartless, violent individuals who are more prone to violent crimes, including murder, than people without Aspergers. Indeed, as a general rule, most people with Aspergers dislike violence and confrontation and are more likely to take any anger they have out on themselves rather than on other people.

6. There is nothing wrong with preferring your own company.

7. People tend to appreciate our honesty (as long as it’s not too brutal!) Stay honest-it makes the world a better place!

8. My Aspergers makes me immune to peer pressure-there is absolutely no point in trying to get me to drink alcohol-many people have tried and failed as my mind doesn’t work in the way that I feel pressured to join in with what other people are doing.

9. Aspergers has given me a strong sense of social justice-I am often filled with despair at how nasty society can be and I feel compelled to help.

10. Keep onto your original thoughts-the world likes original thinkers.

11. The statistics for autism in girls and women are grossly under rated-trust me!

12. Aspergers is far, far more than purely social awkwardness.

13. Contrary to what many people believe, I found that my Aspergers is actually harder to manage now as an adult than it ever was as a child, probably because I now have to take full responsibility for managing it.

14. Aspergers is commonly associated with depression and anxiety and it can be hard for people with Aspergers to work out what certain traits are down to.

15. I would say that the only reason we are so prone to depression and anxiety is because of how harsh people can be regarding social mistakes that we have made in the past,

16. Regarding the previous point, many people with Aspergers have incredibly long memories and are known for ruminating over worries.

17. Just because we have a tendency to take things literally, it does not mean we lack intelligence.

18. Equally, just because we may take a while to process what someone is asking of us, it does not mean we lack intelligence (and, even if we did, that’s no reason to be nasty to anyone!)

19. We tend to self stimulate more when we are stressed. If you have a partner, friend or child on the spectrum and you have noticed an increase in flapping, spinning or other stims, please bear in mind that they are probably going through a hard time and coping the only way they know how.

20. People with Aspergers are extremely under represented in the world of work despite the fact that most of us would make fantastic employees.

21. The fact that we are continually learning and applying new coping strategies means that the majority of us are naturally resilient and determined.

22. It’s always great if you can laugh at yourself.

23. Regarding the post above, despite the common misconception, people with Aspergers do have a brilliant sense of humour-it’s just not what other people might regard as a “normal” sense of humour.

24. A lot of people on the spectrum are naturally nocturnal-I have no issues working night shifts and could work at night full time if needed because I am naturally more awake in the evenings.

25. Being sensitive to our senses is not the same as being intentionally difficult or “precious”.

26. Being socially awkward is not the same as being intentionally rude or arrogant.

27. Most of us are keen to educate people on Aspergers so please don’t be afraid to ask any questions.

28. Finally, despite our differences, there are always people who are willing to be friends with us for who we are and appreciate our quirks.

 

 

Can Animals Have Aspergers Syndrome?

Disclaimer-this is primarily a jokey post. I do not seek to trivialise Aspergers by comparing the traits and symptoms to behaviours displayed by animals-this post is supposed to be taken in a light hearted way, as a bit of a joke. I believe this blog needs jokey posts sometimes! If you find yourself getting angry or wondering why Aspergers is getting compared to animal behaviour rather than other conditions, I would suggest that you are taking this post too seriously. It is not designed to offend-it is designed to make people laugh!

I have the book “All Cats Have Aspergers Syndrome” on my bookshelf. It was a birthday present of mine several years ago and I found it a fun read. It also struck true to my life because it was a running joke in our family that our female cat,Sasha, had the feline equivalent of Aspergers Syndrome. Sasha was always timid, shied away from interaction with humans and hated being picked up with a passion. Her immediate response was to curl herself into a ball and make a strangulated mewing sound. To put it simply, Sasha did not do interaction. I know that the stereotype of people with Aspergers shying away from interaction completely does not fit many people with Aspergers but, for the purpose of this post, I am using that stereotype. On a slightly more positive note, I have heard people with Aspergers say that they think dogs are likely to have Aspergers Syndrome because they are so loyal, a compliment to those of us with Aspergers who have that personality trait. I have my doubts. Dogs survival as a species depends on them being pack animals and therefore highly sociable, not exactly traits you’d find in 99% of people with Aspergers. I do agree with the loyalty factor though-most people with Aspergers are as loyal to their friends and family as dogs are to their owners.

There are, of course, other animals that behave in ways that, if they were human, would result in an autism diagnosis. I remember being on holiday in Cornwall with my family many years ago and the place where we were staying was near a field that had lots of cows in. On our second day there, we drove past the field and noticed a group of cows standing together and one cow standing on it’s own, completely separate from the others. I instantly felt drawn to this cow and felt it reminded me of myself, always standing on the edge of the social group. My family nicknamed it the “Aspergic cow”. All these years later and I still remember that cow vividly. It did it’s own thing, often on the other side of the field completely to the other cows. In so many ways, this cow displayed another stereotype of humans with Aspergers-it was a loner who preferred it’s own company. I have always been that way and it was comforting to know that other species experience this too.

So, purely as a joke, I would have to say that animals can have Aspergers Syndrome. Of course I do not mean this literally. I don’t believe that Aspergers exists for animals the same way that it does for humans. I do believe that some animals share some personality traits with people with Aspergers. Really all this proves is that animals have as much variation in personality types as humans do and that domestic animals need to have their personalities understood by their owners in order for them to be happiest, whether that personality may closely reflect that of certain people with Aspergers or not. Just because a pet may not be sociable or affectionate does not mean they do not deserve as much love and attention as other more sociable animals do. The same goes for us humans. I think we could all learn a lot from the unconditional love our pets give us. Never judge anyone on what’s on the outside-look at what’s inside and focus more on that.

Aspergers and the Achievement Chasm

The inspiration for this post was one of those 10 minute quizzes on Facebook-one of what I refer to as “time wasters” because they’re something I do when I am bored and have a few spare minutes to waste. This particular quiz was about visual memory. I didn’t expect to score highly as my visual memory is very weak and I know this. I was therefore very surprised when I scored almost full marks and confused at the gaping chasm between what I can achieve on a “time waster” quiz on Facebook and how poor my visual memory is on a day to day basis.

As a baseline for how poor my visual memory is, I frequently joke to my friends that I would make the worst witness ever in a court case. My observation skills are shocking. My brain just simply doesn’t retain information such as the colour of someone’s car, what outfit someone is wearing, the colour of their hair or the route between two particular places. I can be very close friends with someone for years and yet struggle to describe how they look unless they are there in front of me. I am more likely to describe someone who is blonde haired and tall as being brunette and short rather than describing them accurately because I genuinely can’t remember how they look. Add in the fact that my avoidance of eye contact means I very, very rarely know the colour of ┬ápeople’s eyes and you get a very unreliable witness to any crime! People often get frustrated with me when my brain fails me on the visual details of life because they expect my visual memory to be as good as my auditory memory and my long term memory and, unfortunately, it’s just not. Unlike some people with Aspergers, I can’t focus on tiny details when I look at something. In fact, my mind is usually focussing on something else completely so it doesn’t occur to me to take in somebody’s appearance.

Looking back, I realise that the reason I scored so highly on the quiz is precisely because it wasn’t true to life. It was a series of pictures I had to memorise and then answer questions on. This is something I can do with ease. When there is nothing else to concentrate on and the scene in front of me is unmoving, I can score very highly in memorising where something is in a certain picture but that’s not real life. In real life, scenes are never still. There is always movement, conversation, smells and touch to contend with as well. In real life, my brain is forced to contend with so much sensory information that visual information is the least on my mind. This is something that other people on the spectrum also find. We can achieve well on tests but can’t translate that knowledge into daily life.

There are other examples of this achievement chasm. As a young child, I was capable of, and deeply enjoyed, reading medical journals but was incapable of dressing myself reliably until the age of nine. Admittedly this is not the same thing as two tasks that deal with the same skill but it is a good example of the spiky profile of people on the spectrum. I have always loved language but failed a recent Proofreading course. My profile of strengths and weaknesses is huge. This pattern of spiky profiles is also common in other neurodivergent conditions such as dyspraxia, dyslexia and ADHD. It is less spiky in people who don’t have any of these conditions.

If you are a parent, sibling or friend of someone with Aspergers or a teacher who teaches pupils with Aspergers, please remember that our chasm of achievement is not our fault. It is a product of the way that we are neurologically wired. If you have Aspergers yourself and struggle to understand why this chasm exists, remember that it is not your fault-Aspergers gives us a lot of strengths, both academic and personal, but also a lot of weaknesses that we need to learn to accept and work with. The kindest thing we can do is accept our flaws, whether academic or personal, and adapt to them and work with them. Accept and be proud of your strengths too-we need to take pride in ourselves before anyone else takes pride in us.

The controversial person first language debate

This is a topic that I have been debating writing a blog post on for a while but I always put it off because I know how much of a controversial topic it is within the autism community. However, I now feel the time has come to write it in as sensitive a way as possible. As always, on this blog, my views are my own and I don’t claim to represent anyone else on the autistic spectrum so please accept that the following views are mine alone. I do not mean to cause offence to any of my readers.

Spend more than ten minutes in an online autism community forum or Facebook group and you will more than likely come across a fierce debate, usually but not always between a parent of an autistic child and an autistic adult, about the importance of person first language. Person first language teaches people to recognise the individual first so they are a person with autism, not an autistic person. There are plenty of occasions where I have seen autistic people reprimanded online for referring to autistic people rather than people with autism, causing fierce debates where they vigorously defend their right to refer to themselves in the way they want to. I can understand both views, hence why I use some person first language on this blog because I never know what views my readers take. I can understand how, as a parent, receiving a diagnosis of an autistic spectrum condition for your child is life changing, even if it has been suspected for a while. Parents go through all sorts of emotions when dealing with the news that their child has autism-grief, denial, anger and finally acceptance and the journey to acceptance is often a long and hard one. Given this background, I can totally understand why the parent of an autistic child would want to separate autism from the rest of their child’s personality. I can totally understand why their point of view is that their child is their child first and autistic second. I also know there are lots of training courses advising all sorts of professionals who work with people on the autistic spectrum to use person first language because it’s seen as more dignified and more humanising. I agree with the principles of person first language for a lot of physical conditions which are separate from the person and can be brought under control and treated, if not completely cured, by medication or surgery. I work with children with epilepsy and would never refer to them as epileptic, purely because a lot of the medications they are on are labelled as anti epileptic drugs and as I was told on a MENCAP bank staff training course on epilepsy and person first language once, “we’re not anti the person-we’re anti the seizures”. In instances like this, I completely understand why person first language is the most dignified and respectful choice.

However, I rarely use person first language regarding autism in my own personal life and neither do most autistic people I have met. We refer to ourselves as autistic. Some people use words such as “Aspergian” but I choose not to purely because it sounds like an alien species! To me, there is one big flaw in advocating person first language for people with autism. It is denying our truth.

Autism affects the way we think and perceive the world. It is not the whole of who we are but it is too significant a part of who we are to dismiss it as “just an add on”. There are lots of situations that have happened in my life that I believe have been down to my Aspergers. There are also lots of situations that I believe I would have probably read in a completely different way if I did not have Aspergers. Aspergers has not made my life easy but it has made me very determined too. It has caused me to have a lot of self doubt and very fragile self esteem but it also brings a lot of positives. I do not know what my life would be like if I did not have Aspergers but I also don’t think I’d want to know. Yes there are other parts of my personality that are separate from my Aspergers but to deny that Aspergers has had an impact on my personality development would be foolish. Aspergers is not a physical ailment like a back injury or arthritis. It is not something that can be isolated from the essence of who we are as people. It is our neurological makeup and, as such, alters the way we perceive the world. When I was younger and I’d just found out about my Aspergers, I used to say, “Every little part of my body is Aspergers, even my fingers and toes!” It was a child like way of expressing that Aspergers is too big a part of who I am to be isolated from my personality. I think a big reason why people on the autistic spectrum dislike person first language in regard to autism is because the majority of people without autism tend to have negative and stereotyped views of what autism is and how it affects people. I have heard autistic people being referred to as having achieved in various situations and circumstances “despite having autism”. Autism is seen by so many people as being a hindrance. What about if people achieve BECAUSE they are autistic, rather than despite it? A lot of people on the spectrum dislike person first language because they believe it links in with the cure debate. I am actually not so sure that this is the case-I think a lot of non autistic people use person first language towards people with autism with good intentions. However, the important thing is that they themselves are not autistic. Telling someone who is autistic that they cannot refer to themselves in the way they feel most comfortable doing is denying them their own identity.

There are, of course, people on the spectrum who also prefer to use person first language and that is their choice. The key word is choice. People should be able to choose how to refer to themselves. You may not understand why someone wants to call themselves autistic rather than refer to themselves as having autism or vice versa but please acknowledge that it is their choice and respect that.