Meltdowns

Without a doubt the hardest part for me of being on the autistic spectrum, and of dealing with other people on the spectrum, is the meltdowns. This is the moment when the world seems to shift and crumble and all reason and control break down. My father is also on the spectrum and so throughout my life I have witnessed these meltdowns from the outside and I know how irrational they appear to everyone else. Now I am raising a child on the spectrum and have to deal with my son’s meltdowns on a daily basis, and the worst ones can shake you to your core because the behaviour is so far from the norm that it can be hard to cope with. From the inside it’s even more confusing because there is a lot more going on than people see from the outside.

I have heard an autistic meltdown likened to an iceberg, and I think this is a very good analogy. The tip of the iceberg is the eruption of emotion and complete loss of control that everyone else sees. Very often I will baffle my husband by exploding about a seemingly small thing such as the layout of the room, my need to have the door to the living room shut when watching TV when he wants it open because it’s hot, or it might be something small and seemingly innocent that he’s said. Whatever it is, it will make me shout and scream (yes literally scream) and more often than not I will abandon whatever it is we were doing and retreat to the quiet sanctuary of my bedroom to calm down. From his point of view my behaviour is a gross over reaction and completely unnecessary, but the chances are it’s not just what has set me off that’s bothering me. There may be a number of factors that have been building up and wound me up to a state where I can’t cope with even the slightest thing being out of place in my world.

I’d love to say these meltdowns are restricted to the home and are only seen by those who love me, but it wouldn’t be true. Whenever I go anywhere I always have a very clear plan about what is going to happen, when it’s going to happen, what it’s going to look like, how it’s going to feel, what people are going to say, and so on. If things don’t fall into place exactly the way I expect it to then I completely lose it. The panic rises in me to the point that I can’t control it and I rant loudly, pace back and forth, wave my arms around, and generally get very strange looks from everyone around me. Usually this is the point when my husband walks away and tries to distance himself from me until I’ve calmed down, and honestly, I don’t blame him. He has been extremely supportive and understanding, but he finds these public meltdowns very hard to deal with.

I had hoped that since I have become more self-aware that I would be able to control these meltdowns better. That I could see them coming and somehow avoid them. Sadly this is easier said than done. I have definitely become better at understanding when I am feeling more agitated, usually due to sensory overload (more of that in another post), but when the panic begins to rise in me there is nothing I can do to reign it back in – and I have tried. I do remain quite self-aware during meltdowns, but I lose control. It’s as though I’m trapped on the inside of this monster screaming at myself ‘Why are you reacting that way? You’re going to be so embarrassed later!’ 

Another form of meltdown that I often experience but which is less destructive, but can be equally embarrassing, is when I break down in tears. An unexpected piece of bad news will cause me to break down completely, regardless of where I am. It happens at home a lot and unfortunately it has happened in work several times. I don’t seem to have much ability to cope with anything negative at all and instead have a very childlike response to bad news. Usually when this happens it will send my mood into a deep slump that can last as long as a week.

Ultimately what meltdowns boil down to is an excess of emotion that is easily triggered by the unexpected coupled with an inability to control that emotion. There are many positive traits that come with having Aspergers, but meltdowns aren’t one of them. If there was one aspect of being on the spectrum that I could eliminate, this would be it, for myself, for my father and for my son.

Special Interests

I have been doing intense research in the autistic spectrum for a full year now, ever since I began to realise that the fears I had been having that my beautiful boy was in fact autistic were not just me being paranoid, but were in fact a reality. However, it wasn't until comparatively recently that I started reading articles about how Aspergers in girls and women presents differently than it does in boys and in men. I was astounded because it was as though what I was reading had been based on me.

One of the elements of how Aspergers presents differently in girls than in boys that amazed me the most was the types of special interests that seem to appeal more to girls on the spectrum than to boys. I think most people know, even if they are not very familiar with autism, that boys on the spectrum often become obsessed with things like trains and timetables. Girls however tend to have more socially acceptable interests and two that I found listed again and again were animals and classical literature. Animals and classical literature were the two driving forces that took me through from my pre-school years right the way to university.

Animals, or more specifically animal welfare, is without a doubt my original obsession. At the age of 3 I began to realise for the first time that the fish fingers on my plate were made out of real fish taken from the sea. I began to ask my mother more and more questions about meat and where it came from, and bit by bit I began to refuse to eat it. By the time I was 4 I was a complete vegetarian and would be for the next 19 years of my life.

When I was 9 years old I began my own animal charity. It was called TAC (The Animal Club) and I roped all the neighbourhood kids in to help me raise money for various animal charities. We tended to focus on helping endangered species and would raise the money by holding car boot sales, carol singing in Whitchurch village, by doing sponsored bike rides, Penny for the Guy and so on. When I was 11 years old I entered a competition and won the title of Young Animal Welfare Person of the Year 2011 for the whole of the UK. My prize was to travel to Canada and visit the baby harp seals on the ice and be awarded my trophy by Brian Davies, founder of the charity IFAW. This was a crazy time for me. I was photographed, interviewed, my story was on Blue Peter and I made friends with Princess Aga Khan who would write to me and send me Christmas cards. I even started to get letters from people who had heard of me in Europe, America and Australia congratulating me and asking for advice in setting up their own charities.

Though these years my focus on animal welfare consumed me. Of course my intense focus on this topic didn't cause my parents any concern at all, only pride as I built up my charity and won awards for it. Eventually, however, the attention I was getting began to take its toll on me, and the assumption everyone had that this would be the focus of my entire life irritated me and the interest fizzled out.

I replaced it with literature. I had always been an avid reader and was reading Enid Blyton paperbacks when I was 6 years old. As I entered my teenage years I developed a strong love of the Classics. Shakespeare, Jane Austin, Charles Dickens, Thomas Hardy, Chaucer, Dostoyevsky, Homer, Henry James and so on. I needed to read them all. My appetite for these books was so great that I could barely stand to only read one at a time. I would usually read three at a time and I would read one chapter from one, one chapter from another one and one chapter from the third one, then I would rotate through them again in the same order for another chapter each. Shakespeare was my greatest love and I couldn't get enough of his work. I have always been a light sleeper and have always found it extremely impossible to shut my brain down to sleep. When I was younger if I couldn't sleep I would give up and spend the night reading a Shakespeare play instead.

I took this love of literature through to university where I studied English Literature, although unfortunately the systematic tearing apart of these books that I loved ultimately destroyed my love of them and I don't read Classics anymore.

Since then I have had various other special interests: Egyptology which I took on as an extra course to study in my free time in Uni (who does that?), Scuba Diving when I worked in the industry in Greece 2003-2004, The Ironworks of South Wales in the early 1800s which I wrote my latest novel on. I love to learn, and every time I become interested in a subject or an activity it completely consumes me to the point that it is a real struggle to think about anything else, and to carry on with normal day to day things that have to be done. As a wife, a mother and someone who has a full time job, these days I have to be very careful about not allowing myself to fall completely into the hole of my latest obsession, because once I am focussed on it, it is very very difficult to pull my attention away to anything else. I also have to be careful in conversation that I am not boring people to death with constant non-stop talk about my special interest. I have been guilty of doing this on many occasions.

Thankfully my current obsession fits into my current life style very well and serves my son very well too. My current obsession is Autism. I need to know everything about it and I am incessantly researching the subject. Thankfully the majority of the people I now mix with in my free time are themselves parents of Autistic children, and so I am able to indulge in talking about my favourite topic without appearing too strange. Sometimes I do wish I could wipe the word from my brain so that it could have some peace for a while, as I drive myself nuts with the constant research that I do, but it's like a compulsion.

My brain is a non-stop machine that craves knowledge and purpose and rarely gives me a moments peace, even when I am asleep. Although it can be exhausting, and I know that from time to time I am guilty of boring people, it can also be extremely satisfying. It is this focus on my special interests that has led to the greatest achievements and experiences in my life. When something gains my interest I have an incredible drive to learn, to achieve and ultimately to better myself, either through a greater understanding of the world or through learning new skills. I would not change this part of me. It is without a doubt the greatest part of having Aspergers.

Socialising

I have been putting off writing this post because I have so much to say that I can't think where to start, so I think the best thing is to just dive in and get writing.

Throughout my life I have always had this unshakable feeling that I was different to everyone else. I have spent years watching other people interact with each other, form friendships, form romantic relationships, and it's always felt as though they were all in on some valuable secret that I didn't know about.

When I was in school I was the child who spent a lot of time standing at the edge of the playground locked in my own little fantasy world playing by myself. It wasn't that the other children didn't like me, it was just that I didn't know how to react to them. I did have friends, but I found it difficult to really connect to other girls, as I have never had any interest in anything girly. Even today other women often seem like alien creatures to me because I just don't care about hair, or makeup, or clothes. I always felt much more comfortable with the boys as they were much less complicated and easier for me to understand than girls. Unfortunately I spent several years in an all girls school, and there is no doubt that this was the low point of my school days. It was at this time that I developed OCD and became a virtual nervous wreck.

By the time I reached my teenage years I'd had a little more practise learning how to talk to people from observing them for so many years, but I still had a lot to learn. I still didn't understand the concept of social chit chat. I just couldn't do it. I thought it was pointless to say something if its not important and interesting. Of course social chit chat is vital when meeting new people, (I know this now) and I remember being told on several occasions when I started going out drinking 'Why don't you talk, you're boring!' because if I didn't have something worth while to say I would just sit in silence. Even my husband is guilty of having said this to me years later when we first met - and he's never living it down! Talk about touching a nerve.

My late teenage years were a nightmare for me. All my girlfriends were going from one boyfriend to another and I couldn't find a single one...and it wasn't for lack of trying either. I was completely clueless when it came to flirting, but I would obsess about guys I was interested in so that they were all I could think about. No doubt I probably seemed like I was stalking them from time to time. It's probably no wonder they weren't interested, but it still broke my heart. I thought I must be some kind of freak, because I was the only one I knew who just couldn't get a boyfriend.

Things didn't improve too much in university. I was the only one in a flat of 12 people in the halls of residence who ended the first year without having anyone to move in with in second year. I ended up having to move in with complete strangers. It was not the uni experience I had been expecting. People told me they couldn't click with me because I was older than them, but I was only one year older than most of them and the same age as one of them. I think I was probably just too serious for them.

I am 32 years old now and not that confused teenager anymore. I have become very good at looking like I fit in socially, but believe me when I tell you that it does not come naturally to me at all. I have merely become very good a mimicking. When I meet new people I have a catalogue of questions that I know I can ask that are socially acceptable, and that will make it appear that I have an appropriate amount of interest in the other person. When I talk to people I am constantly monitoring eye contact, and making sure that I am doing it enough (but not too much) as this also does not come naturally to me. Throughout conversations I am constantly monitoring what I am saying, and what the other person is saying and working hard to try and seem like everyone else so that I can fit in.....and it's exhausting! After social situations I usually find that I am completely drained.

This would all be fine, if it wasn't for the fact that I still have a lot to learn. I still don't get jokes. Not ones with a punch line anyway. Please don't tell them to me, I won't find them funny and then I'll feel like and idiot. I also don't get hints. Don't try and be subtle with me I won't understand, and if you say one thing, but you mean another, the chances are I'm just going to take what you're actually saying literally and not read anything into it. In the same way, unless it's really obvious, I often miss sarcasm. I just can't hear that tone that tells me the person isn't serious. This has made me look like a complete idiot and given people a great laugh at my expense over the years. Sometimes I become so engrossed in talking about a topic that interests me that I become completely oblivious to the fact that the other person has no interest in what I am saying. I can also seem very abrupt at times and have often managed to really annoy people without understanding why what I've said would annoy them. It becomes extremely frustrating when you have good intentions in your head and your words only result in people shouting at you. I also find this quite confusing when it happens.

New social situations that I've never been in before, and therefore don't have an understanding of how to behave in, terrify me. I try to mix with people and do what my friends are doing, but sometimes it's really hard. Whenever I'm coming up to a new social event it keeps me up with panic attacks for nights leading up to it. I panic that I won't know what to say, or do, that I will shut down and not say anything at all, that I will say the wrong thing etc... I do not go out to socialise very often. It usually seems like a good idea initially, but the reality scares me and I often end up backing out.

Unfortunately this doesn't make me a very fun people for most people to hang out with and over the years I have become very aware that whenever I have a group of friends, it always goes well in the beginning, and then bit by bit they'll stop inviting me to things. Other people in the group remain in touch with each other, but I always end up feeling like I've been pushed out. I never see it coming, and it always hurts. I have had friendships that I didn't realise had fallen apart until I wasn't invited to a major life event. I'm completely clueless, but every time it happens it breaks my heart.

Guide to me - I don't want to be a social outcast; I want to maintain my friendships; I do care but I'm not always good a showing it; don't assume that I have understood you meaning or intention; please be patient with me as I'm not comfortable in all the social situations most people are and I can't help that; if I seem rude or abrupt I don't mean to be so please don't be offended; when I get left out of things it REALLY hurts because it is the story of my life and there's only so much rejection a person can take, please remember this.