Sensory Processing Disorder - SPD

When I first started researching the problems my son was having I began with looking at Sensory Processing Disorder (SPD). His problems ultimately proved to extend far beyond those of SPD, but it was as good a place to start as any to learn more about how people on the Autistic Spectrum experience the world, for although everyone who has SPD is not autistic, everyone who is autistic has some degree of SPD.

There are many different ways in which it can present, but the most common way seems to be hypersensitivity. The wrong level of noise can push me over the edge and there have been occasions when both the children have been screaming and a sense of panic has built up in me and I have literally put my hands over my ears and joined them in the screaming, leaving my ever suffering husband to calm all three of us down.

I am also often extremely bothered by noises that may only be small or far away, and when I complain to other people about them they just don’t know what I’m talking about. They can’t hear the noise, either because their ears are less sensitive, or because they are doing a better job of tuning out the irrelevant. I find it harder to tune out unimportant noises and therefore find it extremely difficult to watch the TV if there is even the faintest source of noise in the room, or to sleep at night if there is any noise at all. Likewise a lamp on in the corner of my view makes it impossible for me to watch the TV with dimmed lights as it’s too much of a distraction.

In the same way, when I am focused on doing something that has my attention, I can’t stand it when someone comes up and touches me, because it pulls my attention away. A touch that may be welcome and comforting at the right moment, can be torturous at the wrong moment. My poor husband has been shrugged off and pushed away many times when he has tried to offer a simple hug. Sometimes I like it, sometimes I simply can’t cope with it. In general I’m not a hugging person and the people closest to me know this. I recently tried to offer my mother a hug to comfort her because our dog had just passed away. I knew it was the appropriate thing to do, so even though it didn’t feel comfortable to me to do it, I offered it for my mother. I couldn’t take it to the point of just stepping forward and giving her a hug, so I stood with my arms open expecting her to step into my space and understand that I was offering a hug. I was so awkward about it and it was so out of character that she actually asked said ‘What are you doing?’

Sometimes if too many of these little sensory irritations come together -  a bright light, a distracting noise, an unwelcome touch from someone -  it can all build up and create a sense of panic in me that very often will bring me to the point that the smallest thing will send me into a meltdown. I think this is why meltdowns often seem to be about something small. They’re not, they’re about a whole culmination of factors with one last straw that’s finally triggered it off.

Another way in which SPD affects me is in my extreme clumsiness. This is due to vestibular and proprioception problems, which basically means that I am not very good at gauging how my body relates to the world around it, and how to move effectively. I trip and fall, I spill drinks, I nock the edge of things on shelves when I am trying to set them down, I drop things and fail to pick them up again…and again…and again. It’s as though things just slip through my fingers! As a child I was always the last to be picked for sports because of my complete lack of coordination, and complete inability to hit a ball or throw it in a net. It got to the point when I would forge letters from my mother to get me out of PE lessons.

I don’t suffer from SPD as severely as many others on the spectrum do. It doesn’t cause me pain as it does to some, but it does cause me an extreme amount of irritation. The noises and the lights, and feeling crowded by other people makes me feel panicky, and the never ending clumsiness makes me feel as though I can’t trust my own body. For me I don’t believe these problems are insurmountable, but they are still an important part of my Aspergers puzzle.

Mind-Blindness

Last week my husband and I started The National Autistic Society Early Bird Plus programme. It’s a 10 week course designed to educate parents of children diagnosed on the spectrum so that they can understand Autism and their children better. Of course we are taking this course because our six year old son is Autistic, but my husband came out of the class saying that he had found it more helpful in understanding me. The one thing that we both picked up on that helped to explain the way my brain works is mind-blindness. I was familiar with the concept before, but this is the first time I have heard its name.

Mind-blindness is the inability to understand that other people think and feel differently to the way we do, and that people don’t automatically know what is going on inside your head. This can cause a number of problems when it comes to interacting with other people and I think that it’s been a very important factor in the breakdown of many of my friendships over the years.

If I’m upset about something, whether I’m with my friends or not, I always expect them to know that I’m upset and I then become frustrated and angry with them when they don’t rush to support me. It could be that I haven’t seen or spoken to them for a week, that I haven’t told them that I have a problem, and that they have no way of knowing I need them at all – but I will still not understand why they aren’t calling me or coming to see me. Time and again I have been deeply hurt by a friends apparent neglect, when in fact they don’t have a chance to start with, because of course they’re not mind readers.

For the same reason I know that relationships that I thought were still strong have died while I wasn’t paying attention. Because I was still thinking about my friend, still caring about them, still nosing about their lives on Facebook, I still felt that the friendship was strong – but without making actual contact how were they to know I still cared? Unfortunately I have a specific problem with initiating contact with anyone, even my closest friends. I am much more likely to wait for a text, a phone call, an invitation, than I am to get in touch with them first. Eventually people must think that I have lost interest in them and no longer want to be friends. The result is that one day I turn around and realise that people I count as my closest friends aren’t even my friends at all anymore.

The inability to understand or accept that other people think differently to the way you do and can’t immediately understand what you want from them can also cause a lot of frustration. I have seen it in my son who will never tell you what he wants to do, but rather insists on asking people to tell him what he wants to do, and then becomes frustrated when they don’t know. Often he will say ‘Look inside my head and tell me.’ My husband has pointed out that I do much the same thing when I ask him to choose what we are to watch on TV, but then will become irritated at everything he picks until he picks the programme I want. If, god forbid, he settles on something that wasn’t my first choice, it’s likely to end up in me storming out of the room and giving up on an evening together entirely – because I’m angry with him for not automatically knowing what I want! For some reason I am unable to express what I want, I need him to arrive at the conclusion by himself.

It’s the same when I’ve arranged to do something with a friend and they ask me ‘what do you want to do.’ No one should ever ask me this, because the answer will always be ‘I don’t mind, you tell me.’ I usually do mind, but I will never under any circumstances make that decision unless I am with family.

Conversations can also be extremely frustrating, because the chances are I’ve already run over in my mind how I expect a given conversation to go. I’ve already played out both parts in my head, heard specific responses to what I’ve said based on how I think people should react. When I then carry out the actual conversation and the person I’m talking to reacts in their own way, and not the way I expected them to, I am extremely unsatisfied with the conversation and may even try to repeat it in the hope that this time I will get the response I’m looking for. I drive my husband mad with repeating the same thing again and again until he gives me the ‘right’ answer.

I think that mind-blindness is perhaps one of the leading factors in the feeling of isolation that I carry around with me constantly, because it makes it extremely difficult for me to understand other people and the way their minds work, and causes confusion, disappointment and frustration when they don’t understand me the way I expect them to. I am hoping that with my new understanding of this particular problem I can work on overcoming it, but I also know that although I have a voice that is extremely verbal and often doesn’t stop talking, I have another voice that is locked away inside my head talking away to an imaginary audience and there are some things that most people take for granted that I can’t do any more than I can fly.

Living in a Fantasy World

When I was a pre-schooler I was obsessed with learning how to read, and I was lucky enough to have a mother who was able to spend the time to try and satisfy my appetite and give me the tools I needed to open up a whole new world of fantasy. I clearly remember reading my first unaided page of an Enid Blyton paper back when I was six years old and curled up in bed, and being very proud of myself.

I have always loved to read before I go to bed as I find it a great comfort. I remember going on brownie camp when I was very young and being absolutely horrified that once in our sleeping bags, the lights would go out, and we were to go to sleep…WITHOUT READING! Of course I would have to burrow down inside my sleeping back with a torch to pour through the pages of my books before I could sleep. Even now I don’t feel the day has ended properly until I have read at least a few pages of a book.

I love books for the same reason most people do – they are a way to escape the real world and enter one where anything is possible. The same can be said of films and television, and to me these are much the same drug as a good book is. Perhaps even more so. It’s an escape that can at times threaten to swallow us whole. It’s not unusual to love stories and escaping into fantasy worlds, but for those on the spectrum it’s a more intense experience that can consume us.

In my younger years when I didn’t have such things as a job and children that constantly demanded my attention, a new book by my favourite author would send me to my room where I would lock myself away and not be seen until I had read it cover to cover and completely and utterly surrendered myself to the world it created. It would become my world, and the characters would become my best friends. It would be all I could think about and when it was over I would feel as though there was a deep hole in my life.

Films and TVs shows have had the same effect on me. During my university years Buffy the Vampire Slayer and its spin off Angel completely dominated my world to the extent that I would watch nothing else in my free time, and would even turn down engagements with real friends in favour of watching the latest episode on TV. I even went so far as to write my dissertation on the representations of masculinity in Buffy in my final year.

The reason why these stories appeal to us so much is simple. We spend all day in the real world, with real people, trying to decode their meanings, trying to fit in, trying to understand society and its rules, and it’s both confusing and exhausting. Books, films and TV shows, however, offer us the enjoyments of real human emotions with much less ambiguity. The characters intensions are clearly laid out for us, often we are given insights into their very thoughts and know exactly what they are feeling. In books our protagonists go so far as to tell us what they’re thinking and read the other characters for us. In TV and film scenes are deliberately shot to show us what we should be looking at, close ups on faces and exaggerated expressions make them easier to read, music tells us what the mood is and how we should be feeling. We are able to become part of tight groups of friends, enter into their world and share in their excitement, sadness and jokes, without feeling out of place. What’s more we already know that the story is already planned out. Someone is in control, it is not haphazard like the real world, ultimately there is a plan and you are in safe hands.

The real world scares me, because I am constantly looking for meaning and order, and am never satisfied. In the stories there always seem to be a greater purpose that drives the characters. My constant search for meaning in life keeps bringing me back to these stories, because they are the only place I can find it. They are the only place I feel safe, and where things make sense.

I could recite entire episodes of my favourite shows and films, and their lines will often turn up in my conversation, because I have learnt most of my humour from them. I relate most of the world around me to the stories that I love, and try to find fantasy and magic everywhere in the world around me, because I feel far more comfortable in a fantasy world than I do in the real one. Sometimes it is all I can think about.

I know that it’s the same for my son who frequently replaces real conversation with scripts he has literally lifted straight from his favourite shows. For me the enjoyment that we get from this fiction is one of the plus sides of being on the spectrum. I would not trade in the great I joy that I experience from immersing myself in a fantasy world for anything  – and I wouldn’t take it away from my son either. For much of the time we live in a fantasy world, and I can tell you now, it’s a lot more fun than the real one!

Diagnosis

I am 32 years old and for the first time in my life I have come to an understanding about why I am different to everyone else. It has taken 32 years for both myself and my parents to realise that I am on the autistic spectrum………and I'm not alone. In fact it is very common for women not to realise until they are in their 30s and even 40s that they are on the autistic spectrum.

This is because women on the spectrum seem to be better at mimicking social norms than our male counterparts, and quickly learn to fool, not only the world into believing that we are ‘normal’ (although a little quirky), but also ourselves. Often it’s not until will have a child, usually a son, diagnosed on the spectrum that we come to the realisation that we ourselves are also on the spectrum. It is through our quest for knowledge to better understand them, that we arrive at a better understanding of ourselves.

Many are happy with a self-diagnosis – but not me. There are a number of reasons why I want an official diagnosis. Firstly, although I am absolutely certain that I am on the spectrum, I need it to be confirmed, because then the question ‘why do I feel different to everyone else’ will have been officially answered and I can be at peace with my different self. Secondly, I want to write about this experience, as I am doing in this blog, to help others in the same boat, and to spread the awareness, and I will have more credibility with a diagnosis. Thirdly, there is a theory that autism affects four times as many men/boys as women/girls and I believe the stats are out because high functioning girls are better at hiding it, and there are many women out there on the spectrum that don’t even realise that they are.

So how to get a diagnosis? It’s not as straight forward as it was for my son. For him it was easy. I had to do a lot of pushing to get him moved up waiting lists, but as soon as anyone saw him they were straight away in complete agreement that he was on the spectrum and in need of additional support. His paediatrician even said that he could tell he was on the spectrum as soon as he met him because he has an American accent, despite being proudly Welsh. I knew it wasn’t going to be as straight forward a process for myself, being a full time working mother and wife who has learnt quite well how to appear ‘normal.’

A couple of months ago I had a GP appointment to request an assessment for diagnosis. My mother came with me to fill in the background of my childhood and a referral was made to get the processes moving. It was a gruelling appointment that focussed on everything that has ever been wrong with me, but it was a necessary first step. The GP was completely on board with my self-diagnosis, but she was doubtful that the psychiatrist I was to see would be equally supportive of an adult seeking a diagnosis who was already ‘functioning’ in the world. She didn’t think I would be taken seriously.

Thankfully she was very wrong. Last week I had my first appointment with the psychiatrist and she was lovely. This time both my husband and my mother came with me, and again we went over all my life problems, and she was both receptive and understanding. Surprisingly she told me that she has as many as two adults a month coming to her for a diagnosis on the autism spectrum. I found this very encouraging, as I think it shows that awareness is spreading, and more and more people are going to be getting the help and support they need. Unfortunatly she also told me that I was only the second woman she had seen.

We covered a lot of the same ground that we did with the GP, but it was a little easier this time round. My mother filled in my childhood, I told her how I feel, and my husband told her what a nightmare I am to live with. I will be seeing her again in a couple of weeks to talk about the anxiety and depression I suffer from as part of the condition, and she has referred me to someone who has a special interest in the autistic spectrum to be assessed for a diagnosis. I was thrilled with the way the appointment went, because I am now actually on my way to getting a diagnosis.

However, what really surprised me was that at the end of the session she said ‘I just have one more burning question for you…where does you’re accent come from?’ Throughout my life people have questioned my accent, always failing to place it correctly, and often identified it as being either American or Australian. The psychiatrist could not have been more shocked when I told her I grew up in South Wales. I attribute this to the way I become extremely engrossed in my TV shows and films to the point that it becomes more real to me than the real world. So much so that I pick up the accent (and anyone who really knows me knows 'I don't watch British programmes)........and my son is the same….so I guess things aren’t going as differently for us as I thought they would!

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.

My Early Years

It's safe to say I wasn't the easiest child to raise. Although for the first couple of years of my life I lulled my parents into a false sense of security, from around the age of two that soon came to an end. The well behaved calm child my mother had thought she had, began to have meltdowns that she found it difficult to bring me out of. I was her first child and at the time she attributed my meltdowns to the terrible 2s and hoped that I would grow out of them. I can tell you now at aged 32 that I never have!

Taking me out and about began to be troublesome. My mother would cringe as I would roll around on the floor of the doctors waiting room while all the other children sat on the seats waiting patiently. At the first meeting with my new headmistress when I was old enough to start school the woman looked at me rolling around on the floor while she talked to my parents and said "she's going to be a handful"

I also showed other early signs of being on the spectrum. I would walk on my toes more than most children. My mother thought it was cute at the time, but when I was 16 the doctors informed me that walking on my toes as a child was the likely cause of the weakness and hyper-flexibility that I was experiencing in my ankle joints. It is also another sign of being on the autistic spectrum.

When I was nearly 4 my mother became concerned that I often wasn't responding when she was talking to me. She began to be concerned that I might have hearing problems and so she took me to the doctor. After running some initial tests they informed her that I was in fact deaf, and that the only reason I was speaking as well as I was is that I was lip reading. I can remember taking these tests and I remember hearing beeps in my ears, but I have no memory of how I responded to them. After running some more tests they determined finally that I was not deaf, merely choosing not to respond. I think that today this would lead to an investigation into why I was choosing not to respond, but back in the early 80s there was very little awareness about the autistic spectrum, and no further investigations were carried out.

Although I was not behind in my speech and sat up, crawled and walked on time, I was 4 years old before I started making an attempt to dress myself. My own daughter was only 2 when she started insisting on trying to dress herself, and since this places me more in line with my son who is 5 and has only just started to occasionally try to dress himself, I wonder if my delays in this area point to me having had similar problems to him at this age.

It is hard to look back over 3 decades and assess what signs of Aspergers I exhibited as a small child, but some of these anecdotes I grew up with and it is only now that I realise they slot into the Aspergers puzzle. The more both myself and my parents think about it the more we understand my behaviour back then...and that was just the beginning!

Introduction

My name is Sarah and I am 35 years old. I live in Wales and am married with two children - a 7 year old daughter and an 8 year old son who was diagnosed with Autism Spectrum Disorder when he was 5. I’m sure I will write his story in time, but this blog isn’t about him…it’s about me.

My entire life I have felt different to everyone else, but until my son was diagnosed on the autistic spectrum, I didn’t understand why. It was through my research on the subject to try and understand him better that I stumbled across a complete description of myself, including some of my deepest thoughts never shared with anyone. Yet there it all was in black and white.

Last year I was diagnosed with Autistic Spectrum Disorder on the Aspergers end and for the first time in 35 years I am beginning to make sense of my mind, my feelings and my explosive reactions. I began to write this blog three years ago and it is about my journey of discovery as I try to make sense of my life for the first time. I hope that it will be of interest to others who may be going through the same thing, or who know someone who is. I also hope that friends and family will read it and hopefully they will understand me a little better too.