Diagnosis at 16, Matthew's Story

Hello, my name’s Matthew. I've just turned 19, and I'm in my first year of university here at Swansea. I was only diagnosed with Asperger’s Syndrome in February of 2016 aged 16, late, I know. My story, unlike many of friends here at Eureka, I imagine, is quite different from theirs, so let me tell you it.

I was born and raised in the east of England in Colchester, Essex, to my mother and father. Three years after my birth I was joined by my younger brother. The way I like to describe my family is like that of a stereotypical 1950s household. A 3-bedroom house tucked away in a quiet suburban neighbourhood. Dad would go out to work and Mum stayed at home and looked after me and my brother. Life was pretty relaxing, that was, until school began.

I can’t remember much about nursery or my first two years at my first primary school before I moved. I know that I didn’t really gain any friends there, which is not surprising, given my condition.

Moving to my second and final primary school in Year 2, I did not really make many friends there either, and several times found it difficult to understand what the other children were talking about, again, not surprising for an autistic kid.

In Year 5, with my English levels lacking and my mother determined for me to take the 11-Plus, she made a decision to hire me a tutor, to help outside of class. This tutor of mine was called Daryll, and she would later become probably the single most important and influential person in my life, not that, of course, I knew that at the time.

As any autistic person will already know, change is a huge thing for us and it can be very hard to adapt, hence why we like things to remain as unchanged as possible.

When I first met Daryll, I was very unwilling to co-operate and would desperately find any reason to keep myself distracted, whether that be my pen or my brother. Deciding to persist with me, Daryll kept on coming and soon started to notice something with me. You see, unknowingly my mother had hired a tutor who was incredibly well taught in special needs, having in fact raised two children of her own, both of whom were autistic.

Spending more and more time with me, Daryll started to see the same traits in me as she had experienced in her own children. At the end of Year 6 as my mother had wanted, I went in for the 11-Plus and not particularly wanting to pass, I naturally failed it. It was at this point that Daryll expected that her tenure with me would come to an end, however, my mother kept bringing me round, so I kept having lessons as I began to approach secondary school.

Secondary school for me is where I really start to remember things. I remember the fear of starting there, the fear of meeting a giant amount of new people and having to get to know them. As I progressed through, I remember feeling like everyone was constantly in on some joke. Everyone except me. Not knowing what people meant and missing out on hidden meanings was a regular for me.

It became very obvious to me very quickly that I was not like most of the other guys in the school. The way I would describe it is, I think for most ‘normal’, or should I say ‘neurotypical’ people you go through life projecting an image of yourself that conforms to the way society acts around you. For example, most guys abide by this sort of ‘laddish’ culture whereby the topics of the day are usually gaming, drinking, sex, drugs,and girls - or at least that was most guys at my school. As for girls, I wouldn’t be able to say, but hopefully that makes sense to you too.

For me, and I imagine most autistic people, we don’t really have that projected image. We just sort of go around being us. Now naturally what this means, is that we can sometimes seem a little ‘odd’, as we won’t necessarily act in the way you would expect most people to act. I would be going around school listening to whatever happened at last night’s party and hearing about who had been hooking up with who, but I would just want to talk about the latest Marvel film that had been released, or perhaps some big news event.

Outside of school, I was spending more and more time around at Daryll’s house, where I now went for lessons, most notably working on the giant history projects I had to do. Just before going to secondary school, I had found a real passion for history that has stayed with me ever since. So, when the history department would hand out these projects for my class to do, I would go all in. Whilst most kids would be doing maybe a few pages, I would be coming in with something like 44-page projects (I think my biggest was 48) and I became somewhat renowned towards the end of school for these giant lengthy projects.

As I spent more and more time with Daryll, it became evident to her that I was indeed autistic, and she approached my mother about it. Sadly, however, nothing much happened when my mother was told, and so began a never-ending struggle with my parents, hoping for them to understand and accept my condition.

As I previously mentioned, my family, although not born in the 1950s, certainly share much of the decade's attitudes. Imagine then, if in the 1950s, a family was told their son was autistic. It would be the end of the world! ‘No, my son can’t be autistic, he’s normal, like all of us!’

I think my family has always felt a need to portray this sense of ‘normalness’ across to people, even though it’s not genuine. In fact, my family was far from normal.

Growing up I never realised this, of course. as when you are a child, normal is whatever you are raised in. However, once I began to talk with Daryll, and experience more different families by going round my friends’ houses, I began to realise how abnormal and dysfunctional my family was.

My mother was often more like an army drill commander than a mother, shouting through the house issuing out orders (especially during the school run), constantly moaning and complaining, always seeming so negative. She would always pick up on my brother and I’s failings more than our achievements, and always portrayed this pessimistic attitude. In my life, I have never met a person more stress filled than my mother, not by a long shot!

In comparison, my Dad was very laid back. When he came home from work, my Dad would often come in, maybe grab something to eat, and then go straight to the TV and stay there all evening. I don’t remember having a proper conversation with my father until I was maybe 14, and even then, we only really ever talked about sports.

The ultimate example of this is probably when I returned home this Easter. Dad came to pick me up from the train station and then brought me home. Upon walking in, he proceeded to go straight to watching TV. Not a ‘how was uni?’ or even a ‘how are you doing?’ Remember, this was a father who had not seen his son in three months.

Together my parents are very different, yet very similar in some regards. They both have a very low patience threshold. They seriously can’t keep their cool! They also both have a very controlling nature. In my mother, this can be very easily seen in the little things, like if someone else is driving, she is the worst passenger imaginable! Or if someone doesn’t bring down their dirty dishes in the morning she’ll start to rant. For my Dad, it can be seen in the larger things, like with Daryll. My Dad has never really got on with Daryll. I think he feels like she has greater control over me than he does.

Additionally, as I previously mentioned, they have this inherent need to display a sense of functionality about our family, even if it heavily misrepresents the true nature of our family. My autistic nature then, flew in the face of this normalness making it hard for them to accept it, let alone support me through it. Despite this though, thankfully, I have always had Daryll there to help me.

When telling people about her I usually joke that I have two mothers. My first mother being the biological one, who takes care of my physical wellbeing, housing me, feeding me, and so on. My second mother being Daryll, who takes care of my emotional wellbeing. This aspect of my relationship with Daryll is especially true when it comes to things like the ratio between discipline and affection.

When I came to Daryll, I was a young boy with no self-confidence. I had a rude, unsociable attitude, with no work ethic. From very early on, Daryll made it clear she would not accept this and worked hard and fast to stamp it out of me. Her methods were very different from that of my parents. Whenever I made a mistake, such as being rude, or not putting in the effort I should be, Daryll made it clear that I had made the mistake and that she was disappointed in me, but never made a huge fuss of it, and never, ever raised her voice.

This was a very different world from the one I had been raised in, where any mistake made was the end of the world, and necessitated a moan and a rant from my Mum that would just go on and on.

The best example to show this would be a moment in Year 9, where I had been putting in a lacking effort for months at school and was at a stage where I didn’t feel like there was any point in working hard, or even caring about people. At the end of my lesson one day, before leaving, Daryll sat down with me and was visibly annoyed (though not angry) and told me how frustrated and disappointed she was in me. For the first time in my life, I felt truly horrible. I felt I had let her down and it was like Mike Tyson had walked into the room and sucker punched me straight through the gut.

Daryll always made an effort to compliment when I did things right, and praise me when I achieved well, even outside of the obvious things, like achieving a certain grade at school. Again, this was very different from my upbringing. Affection was not a very well-known term in my family, and still isn’t, honestly.

My parents never seem to get on, complaining at each other more than anything. Usually that is my Mum moaning at my Dad and my Dad doing nothing in response. They don’t even share a bed, which I have been told is very unusual, although growing up I knew no different. For my brother and I, the affection we do get really only comes on days such as our birthdays. Whenever affection is laid on us (only ever by Mum) it is what I like to describe as puppy dog affection, the sort where you scrunch up your face and completely over-exaggerate your actions.

The affection from my family had never felt real or genuine, but with Daryll it was different. It was never over-exaggerated. It was just a smile or a pat on the back with a ‘Well done, that was really good.’ More than that, it was said with actual conviction. For once it felt like when I had achieved something, there was someone who was genuinely proud of me.

And so, the years of secondary school went by, and thanks to Daryll’s relentless efforts, I came out with GCSE scores I was happy with. At the end of Year 11, my relationship with Daryll changed to one closer than it had been before, and resulted in her practically calling me her second son.

I was told through school about National Citizenship Service (NCS) you could do that was really good for your CV. The course would have you form a group with a whole load of random kids from your area, then you would be part of that group for a month. The first week you would go on a trip away from home (in my case to Wales, where funnily enough, I am now studying). The second week would be a trip nearer to home, (in my case, Mersea) followed by two weeks community service at home.

My Mum really wanted me to do it, obviously not understanding that as an autistic kid, being placed in a group of strangers and then stuck with them for a month, as you went to places you hadn’t been before, was basically the equivalent of sticking a chunk of dynamite in your head and then blowing the fuse! Needless to say, I categorically told my Mum I did not want to do it.

Despite this, however, I was brought down to the reception that same day to find my Mum with the paperwork that I needed to sign. She was playing me like a fiddle, as she knew I absolutely hate conflict of any kind. Of course, then I begrudgingly signed the paperwork, heavily biting my tongue.

After school,I was so incensed, I went around Daryll’s, storming in and pacing up and down her living room over and over again. Daryll could immediately tell something was wrong and it all came spilling out.

You see, up until this point, Daryll had had no idea of the dysfunctionality of my family. After that day her eyes were brought wide open. Although Daryll was already more than my tutor, (she had outgrown that title years before) she became more than my friend. She became family. It was from that day, I was able to confide in Daryll when it came to my never-ending problems at home.

Time went on, and I started college. In February 2016, after years and years of Daryll and I going on and on at my parents, I finally got my diagnosis. I cannot describe the relief I felt. I know some people (including my parents) would see it as a bad thing, but from my perspective, it was finally asserting what I had known for years.

For comparison's sake, if a person with a missing arm was told by everyone that they were being silly and that of course, they had both arms, that would be very annoying, especially if those same people didn’t give you due consideration for certain things, given your clear disability. For me it was very similar to that, I could clearly see that I was autistic. but from everyone’s else perspective I was being stupid, well, for everyone but Daryll. That being said, my brother who is also very autistic, probably more so than I am, still doesn’t have his.

The two years of college went by, and under Daryll’s wing, I made it through. While at college, obviously I had to make a choice on whether or not I wanted to go to university. I had always wanted to go to university, and Mum always wanted me to go too, especially given that no-one from my family had ever been before. On the question of what subject I wanted to study, well that wasn’t hard either, as my passion for history had been there ever since I was about 11 years old and I have never had a strong passion for any other subject. In regard to where I was to study, now that was the difficult part, until I spoke to Daryll.

Having had two autistic children both go through the University of Swansea herself, Daryll had had first-hand experience of the quality of the Wellbeing Office at the uni and the support they had set up there for people like me. Although my parents did not consider taking me there, as they did not accept my condition, let alone look for a university that supported me in that respect, thankfully Daryll did manage to take me.

From the moment I arrived here, I fell in love with Swansea. There is so much to love about this city, whether it’s the beautiful scenery, or the fact that everything is so cheap, but for me more than anything it’s the people. I don’t know what it is, but everyone in Swansea or in all of Wales for that matter just seems to have this really warm and loving nature about them. Everyone is always smiling and chill about everything, it’s great!

So that’s where I am now, studying history at Swansea University on the other side of the country to where I was born and, for the first time in my life, surrounded by people who share my condition, who can share in my experience. As well as this, I have a faculty and a wellbeing office full of adults who willingly accept my condition, as well as listen to what I have to say and help me through the more difficult parts of uni life.

Now I know when I have told this story of my past before, people often get rather sad about it, especially with the whole affection segment. Personally, although I understand why people feel that way, I have never found my past that upsetting.

In fact, the nature of my upbringing, although not helpful in a lot of areas, does appear to have had some indirect positive impacts. For one, the overly pessimistic, negative, stressful attitude adopted by my parents has had basically the opposite effect when it comes to me. I think because I have lived for 19 years with people who see things as a hassle and stress, I have this constant, optimistic, more laissez-faire outlook.

The more stressful a scenario becomes, the calmer I seem to be. A good example of this is my return back home this Easter by train. One of the wheels on my suitcase broke, half the tube in London was down, and no trains were coming out of Liverpool Street back to Colchester. Whilst my parents would have been an absolute nightmare in that kind of situation, I was fine. I think it’s because I have seen what the opposite attitude is like and don’t want to be a part of it. In addition to this, because of my mother’s overprotective nature, in a reverse psychology way, I have become more and more independent in nature, which has put me in good stead for uni living on the other side of the country, several hundred miles from home.

So there we are, that’s my story up till now. Hopefully that gives you all some context for any of my later posts, and my perspective on being someone on the autistic spectrum. I know it was quite lengthy, so well done with getting to this point, but I felt there was a lot to get through!

Right, get out of here, you’ve spent long enough reading about me, now go and read something interesting!

Matthew Phillips

#Swansea #parents #Aspergers #Autism #Uni #diagnosis