OCD and how it is not funny if you really have it

OCD, I know I have talked about this before in other posts, but it recently became clear that I need to discuss it again and this time from another angle.

Yet another post about OCD on Facebook came up the other week.  ‘These three targets all look the same to people without OCD, click the link to find out how OCD you are’, or something along those lines.  I have OCD and the targets still looked all the same to me.  I commented on my friends post that this was the case and that I thought posts along these lines stereotype and trivialise my condition.  Another friend accused me of trying to start an argument when it was only a game.

I have seen too many posts along these lines about OCD being a perfectionist neat freak thing that can be judged by silly games.  I see memes and jokes posted around social media quite often that are starting to make it seem like OCD is some kind of joke condition.

OCD is now used as a phrase to describe neatness or fussiness. People often say ‘oh I am a little bit OCD’ but, as Connor Heapy wrote in the Independent newspaper ‘Obsessive-compulsive disorder (OCD) is a debilitating condition characterized by unwanted intrusive thoughts and repetitive behaviors or mental acts. Although OCD is often associated with cleanliness and orderliness, it can manifest in a variety of ways. Some spend hours each day worrying about whether they have committed a paedophilic act while others are plagued by the thought that they may have caught HIV from their toothbrush, towel or phone’.  For me during a bad phase OCD can be a disability, stopping me from living my life a fully as I would like.

It is exhausting both mental and physically.  I get up and down over and over to get comfy sometimes and fiddle with my clothing or cushions or hair till I feel things are ‘just right’.  I have to listen to my own head nag me all day on my worst days.  I have had full on arguments with family members over OCD issues, and even argued with myself and the world around me at times.  I have been known to yell at inanimate objects at times.  It just spills out and I cannot help it.  You can learn to manage OCD up to a point, but it never fully goes away.  There is no full rest-bite from it.

For me OCD is about a feeling.  Getting things ‘just right’ does not always mean things have to be perfectly symmetrical or straight, sometimes I do not mind mess, but in my flat it is an organised mess.  My OCD also gets mixed up with my autism, so it is complicated.  OCD is not as simplistic as a lot of these social media posts make out.  My own head is full of mess so I like to be able to order and control the mess outside my head.

I never post jokes, memes or silly games on disabilities online and I ask other people to do the same.  Please respect my right not to have my disability made into a joke.  I can be a fun person and enjoy a laugh, but not at the expense of those already suffering.

downloadGawd, well I cannot tell any difference and I have OCD.

i-have-cdo  A very common meme I keep seeing

Communication

I communicate a lot with my family and friends electronically using text messages, social media and email. I know a lot of people communicate this way now, but it has been brought to my attention that I may do this more than most people my age. This post looks at why I like to use electronic communication so much.

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Practicality

My relatives live spread out across the country in many different counties. I also have friends that live a long way from me that I met at university. I find the internet a fantastic way to stay in touch with people at a distance. I send letters and cards by post, more than a lot of people do these days, but post takes time and often I want a much quicker response. Also the cost of postal services seems to be getting more and more expensive.

Staying in Touch

I would of lost contact with a lot of people if it was not for Facebook. This includes friends from university, people I met at various events and distant relatives. I have never had many friends and would like to keep the ones I have got. I also managed to get back in touch with a few friends from school that I had previously not spoken with in many years.

Generational

From about my age group and below it just seems to be the natural way people communicate. Although some do so less than others, it is common to use Facebook messenger to stay in touch with friends and even family. Text messaging seems to be becoming normal for people of all age groups now including my parents generation. I am a little bit too old to have had a mobile phone or the internet as a small child, but since I was about fourteen I have regularly used the internet to chat with friends. I got my first mobile phone when I was about sixteen when I decided it would be practical since I was at college and that is what everyone else was using. A lot of my university friends are three or four years younger than me and some of them seem to use electronic communications as much as I do. They grew up with it from a younger age so it is what they are used to. At university I actually would have missed out on things if I was not on Facebook. We would invite each other to parties and nights out using Facebook as it was a great way to invite a lot of people at once. We would use Facebook messenger to group chat as it was very handy for us as drama students to share ideas or work out rehearsal times for our practicals.

Autism Friendly

My autism sometimes makes face to face chat harder for me than it might be for some people. I struggle with eye contact; even my diagnostic report says that I do. When I talk I tend to get carried away and say too much or the wrong thing. When I have to write down what I want to say first either online or in a text message it means I can look back at it and have time to think about what I am saying. It means I am less likely to say the wrong thing and can cut out the waffle, get to the point better. It is common for autistic people to use the internet to chat; it has less social skills to learn, although there are some social rules and I by no means always get them right online. I do enjoy face to face chat, but it can be more tiring for me sometimes and often requires more effort, although this depends who I am talking to and on the situation. Face to face people use non-verbal communication such as body language which can be tricky for autistics to pick up on. There is less hidden meaning in written text chat. I feel like I am more in control with this way of chatting. I do not have to talk to someone when I am not in the mood. If I am having a bad day mentally I can chose to ignore a text message or email and deal with it later when I am more able to. This way I do not upset people and take my bad moods out on them. I do use the phone, but have never been totally comfortable with it. Once I start chatting on the phone I often relax and am fine, but the initial thought of it sometimes makes me anxious. So text messaging is often easier for me. (Although I am getting better with making phone calls and do makes calls when I need to.) Another thing I like about written communication is the more definite response rather than ‘hmm’ or a nod of the head that I can often misunderstand. Even an OK or emoticon is at least a response that shows they took on board what I was saying. I find there is less pressure and less hassle with this way of communicating.

Can Just Say It

I like how I can say what I need to whilst I think of it with electronic communication. If I am not sure if someone is free to chat at the time I can still text or email for them to read later before I forget what I was going to say. Plus sometimes I have to say stuff as I get anxious if I do not. I worry if I do not say certain things as soon as I can to people. I do not mind if people read it later as long as I know it is out there.

Writing is my Skill

Writing is something I am quite good at and I feel confident at it. When talking in person it sometimes gets misunderstood. When I write I seem better at putting at my point across.

How Others Want to Communicate

It often seems to be how others want to communicate with me. Maybe they find it easier as I can bore people with my over talking in person. Also I have no land line phone and calling a mobile phone can be costly so maybe texting or emailing is just cheaper for people. I have relatives who email me rather than phone. I think this could be as they do not know when I am free to talk and do not want to disturb me if busy. I Facebook with some relatives responding to statues and comments as it seems a good way to communicate with each other when we do not actually know each other very well in person. This way I am getting to know them without so much pressure. I text with some family since they are often busy and they do not have time to see me face to face or phone very often.

This way of communicating does come with its own problems. When I do not want to talk I can chose not to, but in turn others can do the same to me. If people ignore me for short periods I am fine, but if it goes on for long periods it can worry me. The trouble is these days people are often expected to be instantly available 24 hours a day when it is not always possible. Another problem is of course when technology lets us down. What with lack of phone signal or devices breaking down or running out of charge sometimes old fashioned post or face to face is just easier.

I do not mind which way people choose to communicate with me, be it face to face or electronically. It is just nice when people want to chat with me.

Social skills are just that, a skill

‘A social skill is any skill facilitating interaction and communication with others. Social rules and relations are created, communicated, and changed in verbal and nonverbal ways. The process of learning these skills is called socialization. For socialization, Interpersonal skills are essential to relate one another.’ (https://en.wikipedia.org/wiki/Social_skills).

You may not think that socialising requires a set of skills, but it does. Some people are better at these skills than others. I found learning these skills difficult and still struggle with them at times. I am getting better at socialising, but still have things to learn.

After a while a lot of people tire of me. I know I can be hard work to spend a lot of time with. In fact I find myself hard work to spend a lot of time with, hence I do not like to be alone for too long. The trouble is I also find socialising hard work sometimes so things do not always go smoothly. On a bad day when I am tired or something has annoyed me I can get worse at dealing with people.

I try to join in conversations with others, but sometimes seem to bore people. My recent autism diagnosis report says I sometimes miss social cues from others and my conversation can lack flexibility. So I guess it can seem like I am giving a lecture which has to be tedious for those listening. To make matters worse the report also says my speech can lack variation in pitch at times which could make me sound like a robot stating facts. If I had not studied drama I dread to think how even more dull my speech could sound. (I think my drama training has helped me understand others a bit better, especially when it comes to reading emotions.)

I can go into excessive detail at times and do not always realise others have lost interest according to my autism report. Since reading my report I have noticed sometimes when people are trying to move conversation on and I am trying to allow conversation to flow more, but it is not always easy for me. When I am passionate about a topic I tend to get carried away. However I realise not everyone is interested in the same things as me to the same degree.

I seem to struggle when people do not sure my point of view. I know others will have different opinions on things and I am fine with this in theory, but sometimes in discussions I find myself not excepting that people may think differently about something from me. I am told I can come across as dictatorial at times, but I honestly do respect other people’s opinions. I am trying to work on coming across better.

cf4fa83670592037a4daeebdf19cd33b--social-skills-social-workI need to take note of this!

I am argumentative which obviously is not a good thing. I do not always think I am right and do not think I know it all. I am often wrong about things, but have been told I can come across as a know it all sometimes. This is not how I feel about myself and do not like this description of me. I need to let others speak more, interrupt less and at times bite my tongue. Sometimes saying nothing can be better than saying something that upsets people. Knowing when to express my opinions is tricky. Sometimes it feels as if people would prefer me to act brain-dead and follow the heard so to speak, regardless of my own thoughts. Maybe I do not express myself well and my points come across wrong. I have been accused of being overly negative and selfish quite a few times, which I really try not to be and hope to change to this opinion some people have of me. Although lately I am starting to think it does not matter what some people think of me as it will not actually affect my life long-term anyway.

'How do you think I ended up alone on the top of a mountain?'

I often find large social gatherings hard work. They are often fun, but require a lot of effort as there is usually a wide range of people to negotiate. I have often been known to end up saying the wrong thing to someone and only realising ages later or someone points it out to me.

If you could take a class on social skills for adults I would. Adults are expected to have picked up social skills as a child, and although I did to some extent, clearly I still have a lot to learn.

Thoughts on why I am still unemployed

‘Many managers make a hiring decision within the first 90 seconds of meeting you’ (Clare Whitmell writing in the Guardian).  The exact time of judgement in an interview varies according to different sources, but all agree it is within the first few minutes.  As an autistic person I think this puts me at a disadvantage.  I do not think I always make a very good first impression.  I take a few minutes to work some situations out.  My OCD often plays up when I first enter a new situation, with me worrying about my hair or clothing.  It often depends how stressed or nervous I am beforehand, which can often be related to how well my journey to the place went.  Once the interview really gets going and I am distracted my OCD almost always dies down and I am fine again.

I think interviews are often not suited to autistic people.  I like to plan ahead, at least in my head, but I often can’t do this very well for interviews as I often do not know what kind of interview it will be.  Will it be one on one, a panel, a group interview with tasks, who knows?  This means I can be thrown in at the deep end, although sometimes employers do give you a good idea of what will happen in advance and this can help.  I prefer one on one interviews mostly as they are a lot less stressful with only one person to focus on at a time.

I am aware that I often talk way too much, so in an interview I try to say less.  However I think sometimes I end up not saying enough and going too quite in interviews.  I struggle to get the balance between saying too much or too little.  I have always been bad at picking up on social cues as to when I should and should not speak.

Maybe I just do not interview well and it has nothing to do with my autism, but I suspect it has at least something to do with it.  I have had so many interviews and yet still have no job.  I cannot think of another reason for it in most cases.  I dress well, turn up on time, answer all the questions sensibly and am always polite.  Employers are often vague as to why they did not hire me, leaving me to suspect that I come across as somewhat odd or ‘special’.

I might be going for the wrong type of work that does not suite me, but I am not sure what other kinds of work I should go for or how you even get other kinds of jobs.  I would really like some decent careers advice, but this seems surprisingly hard to get.  The Job Centre were less than helpful, asking me what kinds of work I would like, rather than trying to find out if a different kind of work would suite me better.  (After over two years in the system you might think they would.)  I have done almost all the courses the Job Centre has to offer.  I can get the interview, for me that is the easy part, which is annoying as once you reach interview the Job Centre seem to think that is it.  Job courses seem aimed at people who lack any kind of qualifications which is not the case for me.  Courses very rarely spend much time on interview techniques and seem to concentrate on the CV and job searching stage.

It has been suggested by numerous people that self-employment is the way to go.  However they never suggest what work I should do to achieve this.  I do not have a hard skill such as plumbing or carpentry that people need and despite trying cannot think of a good business idea.  Also once you start your own business the benefits you are on get cut and what am I supposed to live on whilst I wait for the business to make a profit, if it ever does?  Plus I want a job that gets me out of my flat, not stuck working from home.  Too much time alone is not good for me.  I know autistics are often said to prefer being alone and I do like time to myself, but too much time alone and my own thoughts start driving me mad.  I end up over thinking with my OCD getting worse and my anxiety flaring up.

‘It’s not what you know, but who you know’ as the expression goes.  Clearly this is true as some people seem to get a job from knowing someone in the company and not from being very good at it.  However most people I know are also unemployed or retired and were in the wrong line of work for me when they did have a job.

Someone suggested I try the online careers planner from Prospects (www.prospects.ac.uk/planner).  It asks a lot of work and personality related questions and then suggests suitable jobs for you.  Almost all of the job suggestions it made for me were obscure and not very realistic outside of a major city.  The first job it suggested was a trade union research officer, a job I have never heard of before, let alone seen advertised.

I think I would suit office work, but not really sure how to go about getting it.  I looked at NHS administration jobs as it was yet another suggestion from someone, but a lot of the jobs require you to know how to use computer programs I have not heard of and I suspect mean they are looking for internal candidates who have learnt to use these NHS only programs.  How an earth do you learn to use them in the first place and get your foot in the door?  A lot of office administration work these days requires you to be able to do a lot more than it used to such as accounts and pay role so they do not have to hire another person to do that.  I do not trust my maths skills to do accounts and doubt I could do pay role either.

People judge me too quickly.  I would love a chance to prove myself to an employer, but they never give me time.

My Experiences of the NHS Mental Health Service

 

I would like to share my experiences of the NHS mental health services.  I have found it a patchy service at best, with very little flexibility.  I am not saying that you should not seek help with mental health issues, there are some positives in the mental health system, but it is far from an ideal service and needs a lot of changes to make it work better for more people.

My first experience of therapy for mental health came aged eleven or twelve when I was referred by my GP after my mum asked.  I think she had to ask more than once.  I was diagnosed with OCD by the psychologist.  I had talking therapy once a week, often with my mum.  I got a new psychologist later who put me on medication for my OCD.  I am still on that medication.  I think it used to help, but no longer think it does anything for my OCD.  No doctor willing to properly review it.  One doctor did agree it probably did nothing for me now as I would have become immune to it and put me on a much lower dose as you can’t simply come off it. I know it is one of the hardest medications to come off and the side effects of not taking it for three days once when I ran out at university were awful.  I do not know if the medication has any side-affects as I have been on it so long I am no longer sure what is me and what is the medication.  It could be one of the reasons I am tired so much and would love to be able to try life without it, but right now that does not seem possible.

I started group therapy once a week for a couple of terms.  I am not sure if it was helpful or not, but I liked going as it got me out of school for the morning.  The trouble was I did not fit in with the others very well and some of them could have been a bad influence.  Some of the girls tried to talk me into smoking with them during the break, not that I ever did.

Autism, more specifically Asperger’s syndrome were raised as something I may have.  I can’t remember if it was my mum who brought it up or if my psychologist mentioned it first, but I remember it being discussed.  However I never was sent for testing, which I do not understand as I clearly had major issues and think it would have helped a lot to have a formal diagnosis.

At the age of thirteen I left my first secondary school as I was being bullied very badly and the school was not really addressing it properly, nor were they helping me with my mental and physical issues which were clearly getting worse.  I ended up spending a term in a new education program for children struggling with school run by the childrens mental health services.  It was just a classroom in the mental health services building and not really a school, but it was better than nothing.  Then I ended up in a special needs school, supposedly for those with physical disabilities, but I think my hip was just an excuse and really it was the fact that no other school would have me and the education authority did not know where else to put me.  I think my report from my previous school may have put other schools off.  I admit I had become very difficult to teach by this point, having become very angry a lot of the time and not really being able to handle it.

I had anger management therapy for a few sessions with a mental health nurse.  This was based around mindfulness.  It helped me a little bit, but mindfulness only works if you can feel the anger coming before it is too late, which often I cannot.  The trouble is I tend to go from fine to angry in about a nano second, which gives me no time to put the mindfulness in place.

When I turned sixteen I left the children’s mental health service and that seemed to be that.  I was not transferred to adult services.  Some years later I asked my GP for support with my mental health and I was offered counselling through my surgery.  It was not very helpful as I did not get many sessions and I do not think the guy really understood my problems.  A few years later at university I had some counselling that was more helpful to me.  I think it helped that she was used to working with students so it was more tailored to my situation at the time.  She taught me about mind maps, which helped with my coursework to make it seem less daunting and stressful.

Since then I have gone to my GP for support with my mental health and been told about the anxiety and depression service.  I have tried this service twice, once for depression and once for my OCD.  As a self referral service I found it hard to get an appointment.  Last time I had to ring them three times before they answered the phone and they totally ignored my emails.  For depression this is not helpful, a depressed person is not very likely to keep trying once they fail to get through.  Once you do get an appointment you are told you get twelve sessions mostly over the phone.  I found phone therapy very unhelpful as it meant I could sit at home and wallow in my depression or lie about how much of the homework I had actually done.  I found the phone calls quite uncomfortable and would just say what I thought he wanted to hear to get it over with as quickly as possible.   When it came to therapy for my OCD I found it pretty much useless.  The only kind of therapy they seem to offer is CBT (Cognitive Behavioral Therapy).  At first the program seemed to be helping a bit, but I soon realised it only got rid of one OCD trait to replace it with another.  The therapy never looked at the causes of my OCD behaviour, just the individual symptoms.  Despite specifically asking to have only face to face appointments, I was soon given only phone calls, which were not very affective.  The next stage was to sign me up with an online program that only therapists could add you to.  Some of the exercises on the program required that you logged in daily to the site.  I did tell my therapist that I was in the process of moving and had no internet in my new flat, but despite this she kept on at me to use the program.  Some of the exercises were simply impossible to do in the local library where I often access the internet.  In the end I gave up as even the exercises I could do seemed to not be helping.  I have since been told that CBT will not help me anyway as I am autistic and it hardly ever works for people on the spectrum, so that was a waste of time.  No other service is offered for OCD on the NHS in my area according to my GP.

Last year I was finally diagnosed as High Functioning Autistic or Asperger’s after my mental health assessment flagged it up as something to get tested for.  I was about thirteen when it first came up as a possible diagnosis and it took till I was thirty-one to be tested!

I find it hard to get a GP or anyone else in the health service to take my mental health problems seriously.  I have never self-harmed or been suicidal which maybe one reason I get so little support, despite finding my anxiety and OCD crippling some days.  I have never had a psychologist as an adult.  I did get some support from one GP after I cried in an appointment and asked to sign on as too sick to work.  She got me a mental health assessment, the first and only one I have had as an adult.  This did help as it led to some positive changes in my life.  However I think it helped that I had changed surgeries not long before this as my previous surgery had always seemed to dismiss my mental health problems.

I think mental health services need to be more flexible to meet a patients needs.  People end up costing the NHS more if they are left till they are so ill they need hospitalizing or longer term care.  CBT and mindfulness therapy is proven to work well for a lot of people, but it is not going to suite everyone, yet they seem to be the only things the NHS offer.  Even if it does help, you get so few sessions that as soon as you make a tiny bit of progress the therapy runs out and you go back to square one.  I think the NHS would save money if they invested in better mental health services, as some physical symptoms can be brought on by mental health issues being left untreated.

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Alcohol is not for everyone

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I have given up drinking alcohol. Since mid December last year I decided that alcohol and me do not suite each other. Some of my friends have questioned this abstinence and do not really understand why I have done this. So I have written down my reasons for no longer drinking and hope it helps others to understand that alcohol is not for everyone.

Before I start I would just like to say this is not an anti-alcohol rant, I have nothing against people having a drink and do not mind if people have a drink in front of me.

  • Health

Alcohol is a poison, ‘Your body can only process one unit of alcohol an hour. Drink a lot in a short space of time and the amount of alcohol in the blood can stop the body from working properly’, (www.drinkaware.co.uk). Not only can alcohol effect your liver, it can affect your stomach and digestive system, your kidneys and in fact most of your body systems.

Alcohol also has a big effect on mental health. Alcohol is a depressant, at first it may help to relax you and make you less anxious, but after a while it can make things worse. I certainly felt a low mode sometimes if I had a heavy night of drinking. Drinking can become a vicious circle, drinking to reduce your depression and anxiety, but actually making it worse long-term.

I already have both physical and mental health problems, so I decided it was not worth the risks to make them worse. I can get quite depressed and anxious without the help of alcohol and last time I was very drunk I felt even more low than normal the next day.

  • To stay in control of my emotions better

As an autistic person I sometimes struggle to control my emotions. When I am not feeling at my best I can get very upset or angry easily. When I was drinking I noticed that it often just amplified the mood I was already in rather than relaxed me. So if I was feeling depressed or anxious it just made that feeling worse. ‘Regular drinking lowers the levels of serotonin in your brain – a chemical that helps to regulate your mood’ (www.drinkawear.co.uk) so it was bound to make me feel worse since I am naturally a rather anxious person. Also I have noticed that some people become more angry when they are drinking and more sensitive to things they would normally dismiss as not important, which is not a good way to keep healthy relationships with friends and family.

  • Weight

According to an article in Elle magazine ‘When Alcohol is in your system, it’s harder for your body to burn fat that’s already there’ (www.elle.com). It slows down the rate at which fat is broken-down. Not only that, but drink itself full of calories and sugar. For example cider (what I used to drink most) has 216 calories on average in just one pint. A 175ml glass of wine has 159 calories. A pint of beer has 182 calories on average. In other words alcohol is not a diet drink and can help you gain weight. ‘People eat about 30 percent more food when they consume alcohol’ (www.elle.com) which is something I can relate to. After a night out drinking I always feel hungry, and often end up getting some kind of greasy burger to take home. The large queues at the late opening fast food joints show that this is true for many people. I already enjoy my food a lot and do not need any help to eat more.

  • To Save Money

If you have any taste buds and drink not just to get out of your mind, but actually enjoy the drink itself, you will not be able to drink the cheapest alcohol on the market, such as that shockingly cheap cider you see in stupidly large bottles in most convenience stores. I tried that stuff once and I decided that I might as well just be drinking paint stripper it was so disgusting.

  • Have a good time without anyway

I still go out and have fun with friends without alcohol. I go to a pub quiz most weeks and enjoy it despite sticking to coffee and fruit juice. In fact I think I might be better at the quiz with a clearer mind and no alcohol to make me unfocused. On a night out with friends I sometimes feel a natural buzz from the atmosphere around me and don’t need drink to feel like I am having a good time.

  • Hangovers suck

To state the obvious hangovers suck. When I was younger I used to hardly get hungover, just a dry mouth and a bit of a headache, but the older I got the worse the hangovers got. Being autistic I cope very badly with feeling unwell, I am overly sensitive to even a small amount of pain and I panic when I feel sick. Hungover me was not pleasant for other people to be around. I decided to try and avoid having to feel that way as much as possible. To those who start coming up with hangover cures the NHS website tells us ‘there are no cures for a hangover’ (www.nhs.uk/livewell).

  • To stay safe

After a night out I have to get home again, often alone, I would like to do this with all my faculties intact so I can look after myself better. I would rather not have to go home alone late at night, but sometimes it cannot be avoided, at least when sober I am less likely to end up in difficulty. Alcohol dulls the senses and slows down reaction times, which when walking home can be a dangerous thing.

  • Less chance of making an idiot of myself when sober

When you are the only sober person on a night out, you can see how much alcohol is affecting people. They do things they would normally not, sometimes embarrassing, stupid things. People tend to flirt more when drunk and this can lead to some awkward situations, and sometimes not very safe situations. People often become less careful about what they say out loud and this can lead to saying some hurtful or embarrassing things. Also when drunk people are more clumsy. I know that I used to trip up over my own feet more and found stairs and curbs of pavements tricker. It can be embarrassing and very annoying to spill your drink all over yourself.

  • Supporting my boyfriend who is trying hard to stay off drink

‘Substance abuse in general (that is the abuse of alcohol or the use of street drugs) is a significant problem for people living with schizophrenia, with over half of all people with schizophrenia having co-morbid drug or alcohol abuse issues’ (www.livingwwithscitzophreniauk.org). My boyfriend has schizophrenia and has had alcohol issues for most of his adult life, but is now trying very hard to beat his alcohol dependency. He simply cannot have just one or two drinks; once he starts he ends up having more and more until he is unable to function properly. He so badly wants to live his life without alcohol and has managed to not have a drink for well over three months now. I admire him for this as it is very hard to give up any addiction, let alone when you have a mind that races all day long and will not shut up. So for obvious reasons we cannot go to the pub together and I would rather not have a drink in front of him. I hope by not drinking I am showing him it is possible to live life happily without alcohol.

I am not saying I will never drink again, I might well do, but right now I just do not want to.

Officially a freak and relived

I have always known there was something a bit different about me and I have long suspected I have autism, but no one actually sent me for testing till I was thirty one. I had to actually ask for it and then wait over a year for the appointment at the clinic. It took three appointments, two of testing and one for the results. I had to take a close family member with me, in my case my mum and she also had to answer a load of questions about me and my childhood. (Not so easy to remember everything over twenty years later!) I am now officially diagnosed as high functioning autistic or what used to be known as Asperger’s, but they changed it to reflect the fact that high functioning covers more types of people with it. They asked me how I felt about the diagnosis, so I said relieved, it helps explain a lot about me. It also helps me explain myself to others at times and I am hoping in future will help with things like benefit claims or getting job seekers support.

Not long after my diagnosis I found a fantastic book in the library called Freaks, Geeks and Asperger’s Syndrome by Luke Jackson. He wrote it when he was thirteen and it is a brilliant insight into what it is like to have high functioning autism. I can relate to a lot of what he says and he helps me to explain things better to others. I will use some quotes from the book as jumping off points for me to discuss my autism.

AS (Asperger’s Syndrome) is usually described as a mild form of autism, but believe me, though the good outweighs the bad, there are some bits that are most certainly not mild.’ You try telling the parent of a screaming child far too old to be having a temper tantrum in the middle of the street that it is mild! I remember wishing it was less mild sometimes then at least they may have taken my problems more seriously in school, but of course I am glad it is not any worse.

When we didn’t know and didn’t have a diagnosis (or were not told about it) it was a million times worse than you can imagine.’ ‘You may think that if the child or person you are seeing has lots of AS traits, but you can’t fit them neatly into your checklist of criteria, you are doing them a favour by saying that they haven’t got it. In fact this doesn’t make them not have AS, it just muddles them up more and makes them and all around them think they are even more ‘freakish’.’ Quite a few people have asked me if I really needed a diagnosis, would it not better just to be happy with myself as I am. I get where they are coming from, but knowing is better than not knowing, as it means you can understand yourself a lot better and so can others. I remember being bullied as the class freak and weirdo. I was the odd child that did not quite fit in and I never had any way to explain myself. If I had been diagnosed it may have helped school to help me and it might have helped me to feel like at least I was not a total looser and freak.

To be on the autistic spectrum is not the same as being on death row- it is not a death sentence, it is not terminal, it is merely a name for a lifelong set of behaviours’. So if you suspect you child has autism push for them to get tested for it and do not ignore it. It is not the worst thing that they could be diagnosed with and it may even help them to know they have it. It could help them find support and maybe even get taught in school in a way that is more useful to them.

I can imagine how adults have gone all their lives confused and misunderstood would seem as if they had a severe mental illness. I am sure it would cause depression too.’ I have suffered from depression in the past and have anxiety issues which I am sure are not helped by my autism. I think that if I had been diagnosed and helped at a younger age it might have helped me to not develop such bad mental health issues. Not knowing what was wrong with me as a child did cause me to feel very isolated and frightened at times, which I know made me more of an anxious person and depressed.

I just have to talk about it and the irritation at being stopped can easily develop into raging fury.’ I have always been known as a chatterbox, but for me not talking as a child just seemed wrong, if I had a thought I had to express it out loud. To not be able to express my thoughts was very upsetting and I felt like if I did not express them they would get louder and louder in my head till they were too much to handle. I used to get very angry if I was interrupted or prevented from talking to the point I would scream and shout just to be heard. Although I still talk a lot, I no longer feel I have to express every single thought that comes into my head and have learnt to be quieter in some situations.

Seem to speak rather differently and have difficulties understanding a lot of other forms of communication such as facial expressions and body language. These can be learned to a certain extent I think.’ I now think I am quite good at recognising facial cues and reading body language, but it took years of practise to get this far. I sometimes struggled to understand people when they were not being literal. People seemed to make jokes about things that I did not find funny at all. I understood that it was sarcasm, but I often found I did not like the joke. I think my performing arts and drama studies have helped me a lot in understanding body language, expression and emotion in others.

It seems as if the taste buds are over or under developed.’ It is to do with the presentation, the texture and the smell of food as well as them needing sameness.’ I had a huge thing about the texture of my food as a child, I hated any lumps or bits at all, I even hated bread with seeds in. I wanted all my food smooth like a paste when I was very young. Bits felt very wrong in my mouth and hard to swallow. Now however I love texture in my food and adore seedy bread.

Most AS kids genuinely have a really hard time with games.’ I hated PE in school, sometimes for me it was like a form of torture. I had one teacher who accused me of being lazy, but it was not that at all. It was the fact I would have to change, and then change back again, which with my OCD was one of the hardest tasks they could set me to do by myself as a child. The whole changing into a PE kit thing seemed pointless to me anyway as I could barely catch the ball, let alone do much with it, so I never broke into a sweat. I was unable to keep up with team sports and my coordination for catching and throwing is woeful. It was not helped by the fact that I had no friends whatsoever in my first secondary school and whoever ended up with me on their team resented me for it.

It is very unfair of the media to portray us all as people who talk continually about train timetables or constantly talk about dates or facts, or computers. We are called freaks and nerds enough anyway.’ ‘Despite the film Rain Man, we don’t all have these amazing mathematical skills- I wish!’ ‘Savant autistic is very rare- I seem to have got the nerdiness and freakishness, but none of the genius. These programs seem to make Joe Public think we should all have some seemingly supernatural ability and that is not at all helpful.’ I have in fact got terrible maths skills; one teacher even suggested I might have a maths learning disability. I am now able to use enough maths to be able to function in everyday life, but as for fractions and algebra I never understood them. I find train timetables very useful for catching trains, but dull as ditch water to discuss at any length. I can be very nerdy at times, but I really do lack the genius part, I actually had to work very hard to get to the degree I now have and was never a child prodigy at anything.

I just don’t want to run with the pack. I don’t see the point in pretending to like things when I don’t.’ I never seemed to like the same things at school as everyone else and I most definitely did not fit in with the social life my friends had at college. I could never understand why they wanted to go out drinking heavily and end up in some nightclub listening to awful music. I never saw the point in pretending to like things just so people would be my friend as they would not have been true friends anyway. I was bullied for being different in school and was actually quite depressed for some of my teenage years, but I never saw why I should have to fit in just to please them.  Both at university and now I have made real friends who actually have some of the same interests as me and we enjoy spending time together.

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