Category: Autism

One of the features of autism is rigid thinking and I have certainly had issues with this over the course of my life. Recently I have been obsessed with reaching a set target weight in my weight loss endeavours. I was told by a doctor when I was in my teens that this weight was my ‘perfect’ weight. It also had the appeal of knowing that I’d be able to say that I’d lost a total of 10 stone. What I found myself doing was deliberately sabotaging my eating as I sought what I saw as perfection. I have to accept that I’m older now and have a lot of loose skin from being morbidly obese, it’s just not a realistic goal anymore. I have adjusted my target weight and now only have another 6.5lbs to lose to attain it. I may find myself losing a bit more but I’ve taken the pressure off and I no longer feel the need to self sabotage.

My daughter, who also has autism is very set on the age of films she will watch. She thinks that any film made before the year 2000 isn’t worth watching. I keep telling her that she is missing out on some wonderful films but she is adamant that anything before this date is ‘rubbish’. 

A couple of months ago I found myself doing something similar. I tended to dismiss animated films/TV shows as not worth watching. I think years of watch Disney/Pixar when the girls were younger had taken it’s toll. My husband has been interested in Japanese anime for a while now and suggested watching a series called Attack on Titan. I really wasn’t keen to try it – after all it was a ‘childish cartoon’ but unusually for me I decided to give a few episodes a go.

After two episodes I was hooked. Attack on Titan was very definitely not for children, in fact some scenes were traumatising for me. What struck me was how deep the story and characterisations were. The writing was phenomenal and completely different from anything I’d seen or heard of before. I hadn’t experienced much of Japanese culture before this and I was fascinated. The storylines were also very different from anything read before. I have often thought that films reuse ideas from previous films far to often. For me anime was a something entirely new and exciting.

Anime has fast become a new special interest for me. I’ve just started watching my fourth new series last night. It’s great to have a new interest that I can share with my husband. This has definitely been a learning experience for me and I intend to try other things that hitherto I’ve dismissed.

Attack on Titan

Fixations or obsessions are common in autism. They can take various forms such as continually discussing the same topic in conversations or researching and reading every article on a topic. When I was younger a lot of my fixations were based around people. I had a teacher in secondary school that used to make lessons so much fun that I literally worshipped the ground he walked on. I shudder to think what he thought about it. It took him leaving the school for me to get over it. I still think about him occasionally, no one forgets a good teacher!

More recently my fixations have been around my hobbies. For nearly a decade it was reborning. I watched YouTube videos, bought all the books, did courses and bought every kit that was going. I’m now in the position of selling my supplies trying to make back some of the money I spent.

Currently I have returned to my music. The new ABRSM syllabus is released tomorrow which covers 2021 and 2022 and I am hoping to finally take my Grade 5 exam. I have been somewhat hampered with my health over the past few years but I feel a lot stronger now and able to tackle the hours of practice required.

My renewed interest in music has led to one of my biggest fixations in recent years. I had a video recommendation come up in my YouTube feed for the song ‘Gethsemane’ from Jesus Christ Superstar sung by Michael Ball. Listening to it gave me the chills and the hairs were standing up on the back of my neck. In the past this may have led to a fixation on Michael Ball but for me it was the song. I have now listened to as many versions of this song as YouTube has to offer and have settled on Steve Balsamo’s version. This version makes me cry every time and I can’t stop listening to it. I haven’t been able to sit still all afternoon. I love this feeling!

One of the aspects of autism that has characterised my life more than any other is that of special interests. To the neurotypical person these can often be seen as obsessions. As a young teenager these were often associated around people e.g. my history teacher, George Michael and Chris de Burgh. As an adult they have been more focussed around hobbies although a couple of people have crept in.

When in a special interest I find it difficult to think or talk about anything else. This may seem like a bad thing but I have achieved so much because of this. In the space of a couple of years I reached Grade 4 standard on the piano and only stopped because my teacher retired. I taught myself the art of reborning (making realistic baby dolls) and now I am able to sell my creations. My weight loss journey initially began as special interest but has now become a more normal part of my life.

My husband David is the same and we have learned together that we need to make time for our separate interests as they are an integral part of who we are. We have designated our Saturdays as hobby days; David will go off and do his machining and I will either do some reborning or watch documentaries on my current subject of interest which World War II at the moment.

The feelings attached to having a special interest can be really intense and can bring a lot of happiness. I often feel sorry that neurotypical people don’t get to have the same experience. If there is an upside to being on the spectrum then special interests is it.

For as long as I can remember I have found interacting with people difficult. When I was little I was very shy and quiet and wouldn’t speak to anyone I didn’t know. At school I would try to interact with my peers but from the blank stares I received I knew I was missing something vital. I used to really hate it when people would look at each other after I’d said something as if to confirm to each other that what I’d said was weird.

As an adolescent I made a real effort to talk to people I didn’t know. This didn’t work either as most people just wanted to get on with their day without responding to the weird girl trying to engage them in conversation. I just couldn’t win. I will still talk to anyone and just don’t care about how they respond to me.

I try to avoid social situations as much as possible as I find them overwhelming. I’ve never been one for going out drinking and clubbing; I just don’t like it. As a child I loved family get togethers because everyone accepted me as I was. Now I avoid parties altogether as I find them too much.

The main problem I have with socialising is that I find it exhausting. It takes so much effort to appear ‘normal’ that I can only do it for a few hours at a time. This exhaustion is compounded by sensory overload. I find it almost impossible to separate out conversations from the background noise and it’s even worse if there is music playing. As a sufferer of CFS I have little energy spare for socialising.

The only people contact I have outside of the family is my Slimming World group. They are a lovely group of people and because the groups image therapy is so structured I do not feel pressured. Apart from this my interaction with other people is through the internet. This is ideal for me as I do as much or as little as I want depending on how I feel. I find writing so much easier than talking. I guess this is why I enjoy writing this blog so much.

Good memory.

I have mentioned my excellent memory in a previous post albeit in a negative sense. However having a memory like mine has helped me immensely especially during my student life. My first degree was in molecular and cellular biology and there were endless biochemical pathways that I needed to know and remember for exams. I was able to not only remember each step on the pathways but also the full chemical structures of the intermediates together with each enzyme name for every step. In one 3 hour exam which only contained 4 questions I received 100% for 2 of the questions because they involved these pathways.

I have an insatiable desire for knowledge but only in the areas that interest me. These are usually the areas of science and mathematics but there are a few subjects outside of these that I also love such as history and the origin of religion. I watch documentaries in preference to other programmes. I have also done many online courses since I have been unable to work. I’ve always said that if I won the lottery I’d do some more degrees with the Open University.

I am particularly good at remembering names and faces. I can remember everybody that I went to school with; even in the infants and not only them, but also their parents and siblings. It really freaks people out and I take some weird satisfaction from that.

What you see is what you get.

I don’t have hidden agendas when I interact with people. I am brutally honest if even if I know that it may upset the person to hear the truth. I hate it when people try to bullshit me and I call them out on it. Everybody knows where I stand on any issue and I think that can be refreshing in todays society.

Intelligence.

Many people with autism are extremely intelligent. The last intelligence test that I took estimated my IQ at 155. For me, being intelligent is a double edged sword. I have had a lot of academic success and consequently a comfortable life. I relish any opportunity to learn something new and I am in awe of the universe around me. However I find interacting with people who are not at my level difficult. I don’t know how to talk to them. I often use words that they don’t understand and I worry all the time that they think I’m weird. Over the years I have tended to stick with people who are likeminded.

Attention to detail.

I am able to concentrate for extremely long periods of time when involved in something of interest to me. I can of pick out tiny errors and imperfections in any tasks that I’m working on and will always strive to eliminate them. Consequently anything I produce is of a high standard even if this is at the expense of it taking me longer to do than a neurotypical person would. This trait was very advantageous when I was working as a software engineer when I was involved in producing safety critical systems.

Diverse interests.

Autistic people are known for their intense interests. I have had several in my lifetime and at the moment it is reborning. Reborning is the creation of realistic baby dolls and is a very involved process. Before I started reborning I did an incredible amount of research and taught myself how to do it from videos on You Tube. I continue to work at my craft and I am striving to make the most realistic doll that I can.

My husband’s interest is in machine lathing and has been through the exact same process of research and learning. My younger daughter taught herself to play the guitar and within 3 years had aced her Grade 8 exam; the highest grade possible. I don’t think that any of us would be at the standard we are without our autistic brains.

Non conformist

I don’t follow the crowd. I’m no longer bothered about fitting in with other people. I wear the clothes I like, that are comfortable regardless of fashion. I don’t like the feel of makeup on my skin so I don’t wear it unless I’m absolutely forced to (such as family weddings). As long as I am clean, I don’t see the point of trying to make myself look good for other people. My husband finds me attractive the way I am and that’s all I care about. I think that people who are obsessed with their looks are shallow and judgmental. There’s no point looking beautiful on the outside if you’re mean on the inside. I never judge a person based on the way they look and I think society would be a happier place if other people did the same.

Summing Up

Neurotypical people often focus on the challenges facing autistic people. I hope I have managed to show some of the strengths in this post. I often wonder if I could go back and choose not to be autistic would I do it? I definitely would have had an easier time growing up but most of what I value about myself -who I am and what I do- are a direct result of my brain working the way it does. I am happy with my lot.

I’m going to categorise this subject under autism because I’m uncertain whether my feelings about music are the same as neurotypical people.

Music has played a massive part in my life. I cannot remember a time when I wasn’t affected by it. My Mum said that at the age of 18 months I would climb on the settee as soon as the BBC program Songs of Praise began and I wouldn’t move until it had finished. My Dad took me to see Walt Disney’s Snow White at the cinema when I was four years old and I came home crying my eyes out because the music at the end had moved me. Not all of my reactions to music were positive. At the age of 8 I listened to Jeff Wayne’s War of the Worlds and was utterly terrified. It’s only as an adult that I can listen to it without breaking out in a cold sweat.

I taught myself to play the recorder at age 7 and was able to play any tune I wanted by ear. I did progress to the flute at senior school and as an adult I have had piano lessons. I do enjoy playing music but I have been frustrated in my lack of ability to make the instruments sound the way I want them to. I used to love singing and sang in choirs at school and church. Unfortunately my voice was severely damaged after a serious bout of tonsillitis which developed into quinsies.

I love going to the theatre and try to see a show in London once a year. I wish I could go more often but my fibromyalgia prevents me; it takes me at least a couple of weeks to recover. I love live music – especially rock concerts- but I lack the ability to stand for long periods now.

My taste in music is very wide. I love everything from classical right through to hard rock music. The sheer beauty of some music makes me cry. I never thought I would be able to choose a single favourite song to mention here but I can honestly say that ‘Let me Fall’ sung by Josh Groban is one of the most beautiful songs I’ve ever heard – hear it here,.

Music has always and will always play a huge part in my life. I cannot imagine my life without it.

Writing the previous post brought up a lot negative emotions for me. I have been blessed -or is it cursed- with an excellent memory and can recall things that have happened in my life vividly; unfortunately these are not always happy memories. People with autism mostly adhere to rational thought, routine and rules and when these are not met they feel they have to find an explanation.

I worry what people think of me and I really hate it when I feel that I’ve upset someone usually because they’ve misunderstood my intent. My instinct is to always try and talk it out to make sure they understand what I really meant even if the person is hostile. This has been a source of great distress to me.

There are a number of people over the years that have really hurt me and I have found it very difficult to forgive and forget some of them. I had a teacher in the infants that really disliked me and would never miss an opportunity to berate and humiliate me in front of the class. I had the misfortune to have the same teacher for a year later on and suffered the same treatment. I have never been able to let go of the anger and hurt I felt back then. I wish I could, but my brain won’t let me. It’s the same with anybody that has hurt my girls.

I don’t sit and continually go over in my head everything that has ever hurt me. However if a memory is triggered the associated anger and hurt will surface at an intensity that can overwhelm me. I know it isn’t healthy but I can’t seem to do anything about it.

I have managed to let go of some of the painful memories surrounding my childhood experiences with my father because as an adult I can understand the reasons for the way he was. I don’t remember feeling as if my father loved me when I was little but he had a difficult childhood and just didn’t know what to do with me. My Dad and I became a lot closer as adults and I was able to tell him that I loved him and mean it when he was terminally ill.

I can forgive and forget as long as I understand the reason behind the bad behaviour and the person has sincerely apologised. The things I can’t forgive are cruelty and selfishness. I will continue to try and let these go because I know that it will make my life better.

I suppose we all think of ourselves as being odd and as a young child I wasn’t any different. I used to stand in the playground and watch everyone else play their games and didn’t have a clue how to join in. I tried to create my own games but wasn’t very successful in getting others to join me.

At the age of 7 I started to gain weight and was teased because of it. In my juvenile brain I connected my perceived inadequacies to being fat. This resulted in years of disordered eating in a desperate attempt to ‘fit in’. I also discovered that people would volunteer to interact with me kindly if they thought there was something wrong with me. This began a very destructive path of pretence that continued into young adulthood. One of these caused me to lose the trust and friendship of someone that I valued immensely. I knew that both of these behaviours were abnormal and this contributed to my dwindling self esteem and self worth.

I have an all or nothing mentality and can get obsessed with things e.g. particular foods, which I have eaten to excess for weeks until I moved on to something else. It was the same with my hobbies. When I started trampolining at the age of 16, I went to every session available and not just the local classes. In the past I’ve even gone into debt to buy items to complete collections. I’m a lot better about this now that I understand why I’m doing it.

One aspect of my behaviour that has caused me the most problems is that I have very strict ideas about what is right and wrong. I cannot bear it when I see anything that I think is wrong e.g. I was stood behind someone in a queue at the doctors this week and the collar on her blouse was folded wrong and it took all my self control not to fold it properly for her. Seeing something ‘wrong’ makes me feel unbearably stressed. I just didn’t understand why I was so weird.

My youngest daughter had problems socialising at school and had one special friend of 12 years. When this friendship broke down, she really started struggling. She had chosen to study psychology at A-Level and they had reached the topic of autism; she immediately recognised the traits. A few months later she was diagnosed as having autism spectrum disorder.

David and I started to research autism. I immediately knew that this explained why I was different. Everything from the sensory overload to the rigid thinking suddenly made sense. David also realised that it applied to his behaviour too. Both of us have since been diagnosed with autism spectrum disorder with the subtype of Asperger’s syndrome. The fact that we both have this condition was probably the reason why we got on so well.

I did feel guilty about my daughter not being diagnosed earlier as she had really struggled during her childhood. I had mentioned certain behaviours to our GP when she was younger but was just told not to make a ‘big deal’ out of it. The doctor that diagnosed her with autism said that it was a credit to us as her parents that she had done so well. Our home is obviously very autism friendly e.g. we have a green blind permanently down in the living room to soften the light. When my daughters brought their boyfriends home almost all of them thought that our home was unusually quiet and that the way we ate (repetitive menus) was a little odd.

Being diagnosed as an adult meant that a lot of my behaviours have become ingrained. I have been able forgive myself for some of my failings as I now know that they weren’t entirely my fault. Knowing the problem has helped me make some positive changes.

As an adult I still struggle socially. I don’t understand the social rules and continually say inappropriate things; most of the time in an attempt to be funny. It’s not until I see peoples reactions that I realise I’ve messed up yet again. I’ve tried to maintain a couple of friendships over the years but I feel that they’d rather I didn’t bother them anymore. I feel much more comfortable around family who accept me for who I am.