Autism

The positives of being autistic……..

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.

Autism

My relationship with music……..

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.

Autism

Not being able to let things go……..

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.

Fibromyalgia

The fear of not being believed………

I have mentioned before that during my adolescence I experienced periods of feeling very unwell. I know that both my mother and grandfather (who was a retired nurse) thought I was playacting or that my way of eating was to blame. Not being believed has had a lasting effect on me.

When I was diagnosed with fibromyalgia there were many people who thought I was malingering. Even my husband thought I was exaggerating my symptoms. What was so hurtful was that my mother in law was diagnosed with chronic fatigue syndrome a couple of years earlier and he was full of sympathy and understanding. It took a number of years for him to realise that I was really ill.

One of the problems with fibromyalgia is that the symptoms are pervasive. It is very difficult to decide which symptoms are down to the fibromyalgia and which are indicative of something new. In May I had severe back pain and was told by a doctor that it was down to fibromyalgia. I had the same pain a month ago which I ignored even when it became so severe that my strongest painkillers didn’t touch it . It took me two weeks to go to the doctor and I was told that I also had a fever and tachycardia. I was diagnosed with pyelonephritis (infection of the kidney) and was nearly hospitalised. Fortunately I responded well to oral antibiotics and I’ve now recovered. This situation wouldn’t have escalated if I hadn’t had the fear of not being believed. I now have urine testing strips and a digital thermometer at home so I can check both if this happens again.

There are some in the medical profession that don’t accept fibromyalgia as a genuine medical condition. I have been fortunate enough to have a GP that is open minded. It is very difficult to get an appointment with him if I have an emergency such as a few weeks ago; it’s just the way the NHS is at the moment. I live in hope that current research will eventually find the cause of fibromyalgia so that I and other sufferers can feel some vindication.

Weight

Things that are going well……..

Having reached the end of my back story I am now wondering where to go from here. Things are great at the moment but I know that my situation is not stable. It wouldn’t take much for me to slip back into old habits.

I lost my father in June 2017 and understandably took it badly. We knew it was coming as he had been very ill with cancer for 18 months. I made the most of those 18 months with my Dad but it was a very stressful time. In 2014 I’d managed to lose 4 stone in weight but during those 18 months I regained all of it plus a bit more.

In August 2017 I made the decision to rejoin Slimming World and haven’t looked back. I’m still 10 lbs away from my lowest weight in 2014 but I’m definitely going to get there. The thing that has helped me the most was realising that I had a big problem with chocolate. There was never a maximum amount of chocolate that I could eat that I wouldn’t go over; it never made me feel sick. I craved it like an alcoholic craves a drink. When I started Slimming World I decided to cut it out completely and I haven’t had any since August 2017 (apart from the tiny amounts on hifi bars). The cravings eventually stopped but I know that -just like an alcoholic- if I were to start eating it again I’d be back to square one. At the same time I also gave up biscuits. I’m not a saint, I still allow myself the odd piece of cake or a dessert but I have it in place of a meal and as I only do it once a month or so, it doesn’t affect my health or my weight loss.

I love my Slimming World group and I actually feel that I fit in there. There is so much support and camaraderie that I look forward to going every week. My brain is finally on my side and I am able to stick to the Food Optimising plan with ease. I only have to lose another 16 lbs and I will have a lost a whole 100 lbs from my heaviest weight. I have had this goal for the past 10 years and I know without a doubt that I will do it.

Uncategorized

Bringing it all together……..

It has been difficult to talk about my diagnoses separately as they all interact to make who I am. Genetics has a lot to answer for. My father almost certainly had autism/Asperger’s syndrome although it was never diagnosed. I think that autism is something that is innate and is not the result of environmental influences. I have to mention here that there is no evidence whatsoever to link vaccinations to autism.

I have often wondered whether I would have developed depression if I hadn’t had autism and experienced all the associated difficulties. However both of my parents have been treated for depression as was my maternal grandmother. I think that I was almost certainly genetically predisposed to both depression and fibromyalgia and my life experience led to the development of both conditions.

I have had periods of being very bitter about how my life has panned out. I think that this was only natural but I soon decided that there is futility in self pity. I am so fortunate in many ways. I have a loving husband who loves me unconditionally and two beautiful daughters. Although I always have some degree of pain my condition is not life threatening. I just have to make the best of what I have.

It is only in the past year that I feel I have made any real progress. I have worked very hard at getting my anxiety under control and David is reaping the benefits of me being more independent. Although he hardly complained it was becoming obvious that my condition was a source of stress for him. We have both been a lot happier in recent months. As previously mentioned I have also lost a lot of weight and found a level of exercise that is maintainable. I just hope that I don’t slip back into old habits.

Autism

Autism……..

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.