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Christmas is the most wonderful time of the year……..or is it?

Christmas means lots of things to lots of people but most would agree it is a great time of year, most people have time off work, spend time with friends and family they haven’t seen for a while or others use the holiday to relax and take a break.

Whilst there are lots enjoying Christmas there are some that find it hard for various reasons, they could be homeless, grieving for a loved one, seriously ill in hospital or individuals struggling financially. The individuals in the above situations are thought about this time of year and there are various fund raising events to help, it could be to help keep a homeless warm or bring a smile to a childs face when they have a gift to open from santa.

I could be wrong but the way I feel is that there are certain individuals that get forgotten about at Christmas when it comes to extra support and that is those that find all of Christmas overwhelming. In some kind of way I was one of those people that didn’t give others who may have ASD a thought, I wasn’t diagnosed myself and thought I just wasnt normal. Now I have my diagnosis I haven’t changed and still find Christmas all too much but I am more considerate to others.

I don’t think everybody with an ASD diagnosis hate Christmas but I am convinced there will be some parts of the build up or during the festive period that they will find difficult. I may now have a diagnosis and have some understanding of why I feel the way I do but how much of the difficulties I have are associated with my ASD I don’t know.

I can only describe how it affects me as everybody is different but there will be some similarities. Every year the build up seems to start earlier and earlier, this year the Christmas decorations and products were in shops prior to Halloween which I think is just too early. Even if you love Christmas I am sure it would take the excitement from it, if you are able to eat all the christmas food, listen to christmas music and see all the decorations 3 months prior it takes away the novelty of everything.

We are now a week away from Christmas and I just can not wait for it to be all over, I know come the 2nd Jan I will be back at work but to me that means normality. Everything at the min is all out of sorts, there are people rushing around and others that are been really noisy getting into the Christmas spirit. I am not a Grinch and I am not wanting people not to have fun, I just find it all a bit too much.

Shopping – I have my routines of when and where I go and do not vary from this if I can help it, most people understand but occasionally I have to change my routine but 9 times out of 10 something goes wrong if I have to change it. I have seen some shops have signed up to doing autism hour at their store when they have turned off music, till sounds and lowered the lighting, this is good in that it shows businesses are trying to consider individuals with disabilities. I went to one local supermarket during autism hour to find it was busier than normal, this was not the shops fault the disappointing part was the people in the shop I felt did not need to take advantage of autism hour. I know we don’t walk around with neon flashing signs on our head saying I am autistic but the shop was full of people rushing in before work, taking business calls while wandering around.

This time of year shops are always going to be a lot busier and this is why I struggle, there are people pushing past, music seems to be louder, there are noisy christmas decorations with everybody pressing them over and over again and then obviously there are the young kids racing around shouting and crying because they can’t have one of the toys that they have seen on the shelves. By the time that I leave I am exhausted and need a lie down.

Local Pubs / restaurants – This is the time that they make most of their money so in the run up to Christmas they are naturally busier and and noisier. I don’t go out very often but when I do I try to go out early doors with friends mid week to avoid been in an environment where there is so much going on, this time of year I try to avoid going out at all where most actually go out more. This causes friction amongst family and friends, over the years I have lost friends due to me declining invitations to things, it is also made worse that I have a physical condition which means I would have to cancel at short notice if I get a flare up.

My mum is a massive fan of Christmas and I do everything I can not to ruin it for her but she is always on my case about getting a tree up, visiting people, pushing me to have a drink, If I could go to sleep 1st Dec and not wake up until 2nd Jan that would be perfect. I don’t want to ruin things for other people but I do wish I wasn’t under so much pressure to fit in. I am not a massive drinker but one of the things my mum gets really annoyed with me about is not having a drink on Christmas day, I don’t drink because I don’t want to be in a position where I can’t get home and need to be able to drive. I know that If I drink I can taxi or even stay wherever I am but I need the reassurance that I can leave if I need to. This year I said that I wanted Boxing day on my own forgetting that I needed to be somewhere with my dad late afternoon, so I agreed I would stay at mums on Christmas eve. This was agreed a couple of months ago but they way she is talking to me and others she has decided I am staying on both Christmas eve and Christmas day, I understand it probably makes sense to most but I need some time on my own. I am now already anticipating the arguments when I try to leave on Christmas day, this is just increasing my stress levels and I have noticed that my weird quirks are increasing.

Then there is the gifts, this causes me so much anxiety as I absolutely hate been given presents, it is not that I am ungrateful I appreciate any gift I am given its just my face doesn’t show it. You could give me a million pounds and my face would be the same as if you had given me a smelly sock from the wash bin, I dont mean I would associate any gift with a smelly sock I just don’t react in the way that is expected. I always thank people for my gift but have been told that my face says different, this means that when I open a gift I have to build myself up to do a fake smile and feel that I am been over the top thanking people. I never sleep Christmas eve and its all down to the worry of opening the presents not that I am excited Santa is coming.

Then finally there is the dreaded New Years Eve, I can only describe this as forced fun. I have never enjoyed New Years Eve and hate the fact I have to lie each year. I have been to lots of events and haven’t really enjoyed any of them, I class it as forced fun as you can’t go home until after midnight. I don’t have an issue stopping out late but I want to have the option to go home when I want. I have managed to have a few New Years Eve’s at home alone which I have enjoyed but have been anxious due to the fact I have lied so that I can turn down invites, I have sat in the dark without any TV on in case anybody went past and new I was out which then added more stress than If I had gone out in the first place.

I am finding out more and more about myself since the diagnosis and maybe this time next year I will be able to manage my anxiety and increased quirks  I have around this time of year.

Only 2 weeks to go and it will be all over. I wish everybody a happy Christmas and hope that everything goes well, just because I struggle doesn’t mean I think everybody else should stop celebrating and enjoy the time with family and friends.

Kids are Kids, all they want is acceptance.

I understand that there are many children that have disabilities but that does not mean they don’t have feelings and get hurt when people stare and poke fun. Its not that I didnt think it never happened but I never really thought about how it effects the child and the family. Today I came across the post below ( permission to share was added) and it made me feel really sad. I have had difficulties growing up and not fitting in but I know some have had it so much worse.

I have reposted the post I read below in the hope that it may get seen by anybody that stumble across my ramblings and it makes them think just like me. I know with kids they don’t understand and it is down to the adults to explain or just lead by example but I really do think people should try to understand and a simple hello would go along way.

This was written miles better than what I ever could

So after a week away enjoying the sun and swimming with our gorgeous girl this week, it came to my attention the general public is desperately in need of some guidance around interacting with kids with disabilities and their families. I will premise this is just how I feel, but perhaps others feel the same…

1. First and foremost they’re just kids. They just want to play with your kids. They may think you’re funny and want to interact. It’s really as simple as that.

2. Mums and dads – if we arrive at a pool, park etc. and you suddenly corral your kids with “we’ve just finished” or “kids it’s time to go and get a snack”. We know what you’re doing. We see you. You’re nervous your kid is going to be rude and would rather avoid it altogether. Seriously my family can clear a pool in five minutes.

3. If your child is staring, take the lead. Say hello. She may say hello or she may ignore you, but you’ve shown your kids what to do. I swear I can count on one hand how many kids said hello to Lucy this week and we encountered up to a hundred in the resort. I love those kids, they warm my heart.

4. If your child is being rude and running away, laughing, pointing, staring with an ugly face, intervene and quietly pull them away and tell them that’s rude. You’d do it if they did it to a neurotypical kid! Don’t run away from this opportunity to show them the right way to interact. This world will never get better for people with disabilities if we don’t teach people to respect.

5. She sees everything and she hears everything. I hear it and I see it. I have the world’s best poker face but the family sees it all. We push it down to the deepest parts of our hearts because if we acted on this, we would be arrested repeatedly.

6. Don’t be scared to talk to me, ask me a question. The most wonderful young mum came to talk to me in the pool, turned out she had grown up with a young man with CP and wanted to know about Lucy. After having Lucy be ignored for two days by everyone, it felt so good to be seen.

7. We’re totally jealous of all the parents sitting around the pool/park chatting without having to watch like a hawk. Lucy took her seizures to a new level this week with one in the pool, so our safe space of putting on her floaties and letting her play is now out the window. We’re exhausted having to watch all the time. There’s never a moment outside the house we’re not having to watch. And she’s 12 years old – we’ve been watching her obsessively for 12 years. Not great for your mental health.

8. On that note, feel free to offer some help. I’ll let you know if I’m okay, but I’ll also let you help if you can. When I’m trying to get Lucy out of a hard physical situation, I would love someone to offer help at least. I was struggling to get her out of a pool and 15 people sat and watched me. On that note, because we’re having to be so vigilant maybe offer to get them a coffee? I would have killed for a margarita from the pool bar but just couldn’t take my eyes off her to make that happen.

I know it can be hard with kids, I get it, really. But imagine if that was your child that you saw ignored and run away from over and over again. You would want it to change for her in some way.

Get A Puppy, It Would Be Good For You They Said!!

Are emotional support animals good for individuals with autism or mental health issues that cause anxiety? If I had been asked this previously I would not of hesitated to say yes, however I currently not sure.

I love animals they care about there owners and are very loyal, they dont care what you have or haven’t done and dont judge. My favourite animals are dogs and I have wanted one for years, my grandad used to take me to pet shops as a child to look at puppies but I was never allowed one. I asked constantly for a dog but was always told no, I do see now I am older that it wasn’t feasible with both parents working full time. When I started living independently I ended up owning a cat, I was never a fan of cats and ended up with him accidentally but I grew to love him. He died about 18 months ago and I do miss him, he was just cheeky and naughty but funny with it. I dont think I realised how much support he gave me, If I was ever struggling with life he would jump next to me and snuggle in really close and keep tapping me as if to check I was okay.

Prior to my autism diagnosis I went through a really rough time and my mental health deteriorated, looking back my cat was a great comfort. Not that there is ever a good time but I do feel he died at a bad time for me and I keep thinking that his last 12 / 18 months was not the best and my issues had an impact on him.

After speaking with my GP and mental health nurse they felt getting a dog would be good for me. I think they felt that the dog would get me out, give me some responsibility other than myself and give me some emotional support. I did lots of research into dogs and breeds and when I say lots I mean lots I wanted to make sure I got it right. I had a few preferences but I also had a few must haves. I struggle with allergies and am allergic to some dogs so was looking to see which breeds would not shed, sometimes called hyperalogenic. This in itself was a mindfield as each breeder was giving me different advise and telling me not to trust everybody who says their puppies were hypoallergenic. My other preferences were a middle size dog as my balance is not very good so a large one could easily pull me over and would require more exersie which I could not commit to and would not want to not provide what the dog needs. I also wanted a dog that was known to be intelligent and have the ability to be trainined to support me should I need the help. The final thing that I was looking for was a cute looking puppy so I ended up with a Cockapoo.

He is so cute and such a cheeky monkey BUT it is not all fun and cuddles, in fact it is really hard work. I never expected it to be easy but it is a lot harder than I thought. I am finding it really difficult and at times I do regret getting him, well that’s until I look into his cute little face. I have booked a trainer as I want him to be well behaved so that he can be let off the lead and doesn’t cause other issues by biting or jumping up. He has picked up the usual tricks really quick but he wont be left alone for even a second and if I am on the phone he just constantly screams and barks. The trainer comes and he behaves perfectly and then she goes and he just doesn’t listen to me, the trainer said that I am too hard on myself and that my anxiety is getting passsed on to the dog.

I feel really guilty that I am passing my stress onto the dog and am doing everything to stay calm and keep working with him to make sure that he is happy and stress free before I start thinking about expecting him to assist me. Each day there is an improvement and last week when I was having a bit of a melt down he jumped on my knee and climbed up my chest and even though he was only small he pushed me down by pressing his paws on my shoulders and then he just laid on me. Every now and again he gave me a little lick but he was so reassuring and calming, I knew at this point I had made the right decision.

What I have learnt is to not be so impatient and not be so hard on myself or the dog as he is doing very well picking up all the tricks and the correct behaviours. If I was to be asked my opionion on getting a dog for support I will still say it is a great idea but make sure whoever is considering taking the plunge is aware that it isn’t easy and things may get harder before they get easier.

I am going to work hard with puppy to see if he can not only help me but I would love to give something to others and would love to see if I could train him as a therapy dog so that I could see if I could help others, well the dog help others. I have had some real ups and downs over the last few years and feel that I have not always have the best support possible but I have had some amazing support from some  individuals that have gone above and beyond to make me feel safe and try to help me understand my diagnosis, hopefully if puppy can pass the relevant tests I can give something back.

Why Do I Always Cause Myself To Become Upset & Anger Others?

I’m writing this while upset because I have had an argument via email and messenger that was just unnecessary. It was just miss communication and it was happening too fast for me to keep up. I hate falling out with people and this was just caused by me trying to be helpful.

I am currently working for a friend who is not aware of my diagnosis, this is not because I am trying to hide it or feel he won’t understand I am just not ready to share with people yet. My friend has worked with me previously and knows I have a good work ethic and trusts me to do the right thing by the business. This week has been a difficult week due the team not really working together and lots of bitching. I think I probably found it harder than most as I don’t understand why people don’t play fair. This issue was resolved and everybody seems happy but the things that have been put in place are very good for the employee and I can see how in the long run it could be detrimental to the company. I haven’t mentioned it to anybody as I know it might cause a problem and I don’t like the drama, I also know the director with eventually realise and things will change.

I have often been told that I am good at spotting things that are not right or could cause issues in the future, companies that I have worked for previously used to use me when they were planning on implementing changes. Whilst this may seem a good trait my difficulties with communication make this positive a negative at times.

Anyway back to what’s just happened – yesterday I received an email from my boss that I may have well not may have I did misunderstand. My boss texted me asking my thoughts and I refused to do one of the things I thought he was asking me to do, I felt he was giving me more work to do and I am currently working 7 days a week and long days. I have not been made to work that much but I always want to do my best and like to do a good job.

My boss obviously was not happy with me refusing and responded back with a message that I found confusing as it wasn’t relevant, a colleague then spoke to me and said that the boss hadn’t understood me. I re read what I had wrote and I felt it made sense but his reply wasn’t really the answer to what I was saying, also what made it worse was my boss kept sending more messages saying the same thing but worded different, I was not coping too well so sort of said ok and ended the messages. Now today I had to send a message via email about something unrelated but I thought one of the attachments may contradict what was said yesterday so felt I should explain myself to confirm I understood and would follow what was requested yesterday. I sent the email and finished for the day.

Now what went wrong I have no idea!!!!! I wish things like this didn’t happen, I find it difficult to cope and end up making things worse. I was sat in bed and received a Facebook message that I felt was a bit attacking and totally not understanding my email, first thing I did was panic and hastily respond trying to explain again. I then looked at my emails and he had sent me an email so I responded to that again it was a bit all over the place as I tried to explain but by the time I had sent that there was another email and then more Facebook messages. I couldn’t respond quick enough. I was saying on each response that it was fine and that we were saying the same thing, it was ended when he texted to say I was been passive aggressive which I wasn’t I sent one final message to say stop. Since then I’ve had a few more messages but I can’t face reading them.

I am now sat up at 2am really upset and hating myself because nobody understands me. This situation happens all the time, not the exact same thing with same person but people not understanding me and it’s really getting me down.

I have some help from an advocate and she is really good at understanding me, it’s not perfect but she repeats back to me to confirm. She clearly has experience and I know not everybody can have the same experience or understanding especially when I haven’t disclosed. There are so many things that could be so much better if I could learn to express myself in a way that didn’t cause confusion. The most recent examples are

# The one above

# I have had a series of symptoms that have helped my GP diagnose and offer treatment which is great, however I have been trying to explain this for the last 3 years. I don’t blame the GP , it is all down to the way I badly explain things

# I recently caused confusion over if I was going to a social event, and who I was going with and at what time. How I managed this I will never know as I was not even free to attend.

I have had it explained to me that individuals with autism do struggle to get across what they are trying to say and it is made worse when stressed and frustrated. Today’s incident has left me upset, which is keeping me awake so will have a knock on effect on my ability to do my job tomorrow. One of the main things I will struggle with is communication which is what has caused today’s issues, it is just like a vicious circle.

I was online earlier today and have seen there are books that claim to help with communication and social skills, books won’t help me as my concentration is not very good if I am not involved / engaged in what I am doing. When I next see my advocate I am going to ask to see if there is something interactive online that I could work through.

There seems to be a lot more understanding in schools and workplaces of people’s individual needs so more support is available. I do feel if I had been diagnosed earlier I would not struggle as much as I do now, hopefully younger people are now getting the support they need so when they are in employment they don’t end up in unnecessary disagreements.

Well that’s me over and out !!!!!!!

 

 

Meltdowns – Acceptable For Adults?

Things are definitely changing, well some peoples opinions are changing toward differences in children but is there really the same amount of understanding when it comes to adults?

I am sure we have all done it and I know I have been guilty of judging a parent who’s child seems to be creating and miss behaving when out in public, as much as certain behaviours I can find difficult to be around I do try to understand like a lot more people do. Now what I wonder is how tolerant others would be if they saw an adult having a meltdown.

I have obviously always been autistic but am only just learning what it means and how it really effects me, I have always had difficulties but just assumed I was odd and never really understood what was happening to me and why I felt so panicked but learnt at a very young age to hide how I was feeling and became known as the one that didn’t have a lot to say unless I’d had a drink ( obviously not as a child 😉) Once I get comfrotable with somebody I am am a lot more relaxed but in strange surroundings with new people I feel really uncomfortable and it is  like I have to pull out some big performance just to get through the day. I can only assume that the ‘act’ was good as I have got to adulthood before my GP suggested that I was autistic and that was only because I was behaving out of character.

I did get unwell and this is when things came to light, however I have since got better  but I have not managed to get my acting skills back and feel that any little thing has the potential to send me into meltdown. I am currently fininding this hard to deal with and get embarrassed as I don’t think my reactions are accepted like they would be if I was a young child, now I am not saying I lay on the floor kicking my arms and legs whist screaming  but I do think my behaviour is frowned upon and I cant be the only autistic adult that feels the same.

I was justifying my behaviour by thinking the meltdown causes are so dramatic that my responses were justified but this week I have been really struggling with things and have been stressing myself out until I eventually had a complete meltdown that put me to bed for 2 days. So what were these ‘dramatic issues’ I had to deal with?…….

1) I was accused of lying when I wasn’t

2) The GP put the wrong date on my prescription

3) The chemist gave me the wrong pills

and 4) now this is a biggy I can not find any plastic straws anywhere and I don’t like paper ones.

Okay I am not stupid lack of plastic straws isn’t a big issue but to me it felt like the end of the world.

The way I deal with things is normally in a formatted logical way and if anything happens to throw things off track all logic goes out of the window and the smallest of things can magnify into what feels like the end of world and there is just no reasoning with me. I may not be screaming and kicking my arms and legs but in my head I am and  then people get cross with me because I go quiet and where possible I lock myself away. When I am not able to retreat to my safe place I can react in ways that can be seen as inappropriate, but I am not doing it to hurt anybody but people have taken things personal.

I don’t expect everybody to understand everything that I am feeling or understand what it is like to be autistic but all it would take to make things better is not to judge and understand that the behaviours being displayed could just be a way of coping when Myself or others with similar issues are overwhelmed and can’t find a way to ask for help, explain what the issue is or escape from what is causing the distress.

So as it stands a younger person having a meltdown is now becoming more acceptable or at least understood but an adult displaying challenging behaviour is just seen as out of order, disruptive and deliberate.

My personal experience is that others don’t realise that I can’t put things to bed until I feel it is resolved but I am yet to find somebody that understands that. I don’t think people are deliberately been awkward by not helping me understand and put an end to things, I genuinely believe they think they are helping when they are intact making things worse. A recent example was when I was accused of Lying I was really upset and had to prove that I hadn’t. I then got confirmation I hadn’t lied and that it was 2 other misunderstanding a conversation that was been relaid. Now I assume based on the reaction that everybody involved knows I haven’t lied BUT I can’t let it rest until it is said to me that they know I haven’t lied, all I am getting told is don’t worry we’ve moved on thats the past. I am sure the person saying this is thinking they are doing the right thing but actually they are causing me a lot of stress and I can’t get it out of my head.

My diagnosis is still relatively new so I am sure my view and experiences will change as time goes on, and I really hope awareness improves to make life easier for those on the spectrum.

 

Follow up after diagnosis

I had my follow up appointment with the autism diagnostic service yesterday which I assume is now the end of the process. I am a little confused about where I go from here but if I was to compare this to a hospital follow up from a broken leg it was no different, I wouldn’t expect anymore then so don’t know why I was expecting more on this occasion.

I attend with the family member who has supported me all the way through, I was nervous and anxious but have come a long way since the referral was made and even imporoved from diagnosis but unfortunately I was having a bad day. I felt I was a bit pre occupied with some other issue so just wanted to get this over and done with.

When we arrived we were met by a really nice lady who took us into the waiting room and said we could sit where we wanted, this room isn’t the nicest room I have ever been in but it is probably the best waiting room I have been in. You can sit on a sofa, chairs or round a table, you also had the choice of sitting still or taking advantage of the items in the room to use. We were not kept waiting long which I think is good as it did it give me time to sit and stress about what was to come.

I was taken into a room by a nurse that I had met at the 2nd assessment I had which was good that I knew her but I hadn’t taken to her as well as the others I had met which was a shame, this is no reflection on her it was just I felt the others I had met seemed to have a better understanding of me. My understanding was the meeting was more for me to ask questions and say where I felt I needed help so that they could discuss what help was available and to point me in the right direction, I think this is a good idea and I am sure lots will benefit from this but I don’t like asking for help and never know what to say. I explained what I had been doing and who I had met at various appointments, I discussed how a nurse at my local GP surgery had been really good, she didn’t 100% get me and didn’t always get what I was trying to say but she did do her best and has been really kind to me. My family member explained that I have not had the best experience with the rest of the GP surgery and that she felt there was a lot that they could learn and improve on, I thought that was a little harsh as they have made mistakes and haven’t always put my best interests 1st but there has been some really kind and helpful people at the surgery. There is a long way to go and do think that they could maybe spend some time gaining an understanding of autism so that they are in a better position to help others like me. I do think that it would benefit all staff and not just the doctors.

My family member was aware why I was pre occupied and what I was currently upset about and suggested that I told the nurse at this follow up to see what advise or help she could offer. When I am upset or anxious my communication is not the best but she did try to understand what I was saying, it took a few attempts but she was very patient and did her best to understand. She then explained that her boss ( I think she was a consultant) was in and she felt that it would be worth discussing it with her. The consultant came in and even though I had not met her before she seemed to understand me and also managed to explain things is a way I found really easy to understand. She suggested that I needed to see my doctor to review my medication but explained how the review should be done by the doctor and also how I had to make sure I understood the process. I was concerned that the GP would not have time to do this but she said she would contact them on my behalf and that she would explain what needed to be done. I honestly felt like a massive weight had been lifted off me. Once she had agreed what she was going to do she didn’t leave the room before she had confirmed I understood and was happy with her decision. I don’t think I will ever see this lady again but she was really good and clearly very experienced in dealing with autism and feel she will be a real help to any of her other patients.

Now that I have been through the diagnosis process I can look back having the time to think about what has happened, what’s helped and what hasn’t. Based on what I have heard I have been lucky that it has taken just over a year from referral to diagnosis and then follow up, others I believe have not been so lucky. I have a physical condition which does require hospital visits and these sometimes take time but don’t feel as long as the autism diagnosis has taken. Waiting for things is something that I struggle with and it makes me really anxious, its not that I am inpatient it is just I stress and panic without timescales. I am the same for everyday things like arranging to meet somebody I don’t like to just know the day I don’t feel safe If I don’t know what time and where we are meeting, however once with friends or family I am happy if arrangements are not so regimented as I feel safe and will go with the flow.

Has been diagnosed helped? I cant answer this yet as I feel I am still dealing with the aftermath but can see how beneficial it can be for some. One of the positives is that I am starting to understand why I feel or react in certain ways, I am also hoping that others will start to be a bit more patient with me.

What hasn’t helped? The shock and how the referral came about wasn’t the best and has left a bit of a negative feeling about the diagnosis and also the the doctor that referred me. I am sure in time I will be able to park that and now I have the diagnosis I am going to try and concentrate on the positives.

Would I tell somebody who felt they may be interested in getting a diagnosis to go for it? Probably not, this may change in time. As much as I wouldn’t proactively push somebody into getting a diagnosis I wouldn’t actively discourage either.

I may have had my ups and downs throughout the process but I would like to thank everybody that has been involved in my care over the last couple of years, we may not have hit it off but I don’t think that there has been anybody really that hasn’t wanted to do the right thing.

So here is to spending the rest of my life knowing I am autistic …………………………. how much different will things be? – Time will tell xx

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hi how are you?……. DON’T answer that as I don’t really care.

There are so many things that people seem to do and say that just doesn’t make sense, it all seems so pointless. Why do people say How are you?  When they don’t really want to know or actually care?. This is something I have noticed more since I started working (many years ago) this is a habit that I have also picked up on and seem to do the same thing BUT I do mean it.

In a previous role there was a lady who would give you her life story whether you asked for it or not which was amusing but It was really unfair how others used to ask how she was and then get frustrated when she told them. Looking back she was ‘different’ but we  are all different in one way or another and the world would certainly be a boring place if we were all the same. Everyday without fail she would ask me what I was going to have for my tea, I used to feel bad as I never had any idea as it isn’t something i really think about but it got to the stage where I would make something up, it did get a little awkward if she asked me the next day if I enjoyed it – I am convinced my blank expression made it obvious I had forgotten what I had previously said.

My autism diagnosis is still fairly new to me and I am finding out and understanding more as time goes on, I have started questioning my actions and asking myself if I am doing what I am doing because I am autistic and is this what others believe to be ‘normal’. Empathy and giving a sh*t about people is something I am finding hard to understand as I don’t think the way I feel for others is a typical autistic trait. While trying to find out more about autism I have found lots of info about how we don’t care about others and can not show empathy, I feel I am the complete opposite. I know we are not all the same and maybe I get empathy mixed up with been fixated on something but I feel I care too much.

A recent example is somebody I know, not a friend just somebody who has been kind to me in the past is having a difficult time and is going through something that is upsetting for her and her family. Since I found out I did send a message to say I hope she okay but haven’t been able to get the situation out of my head. I am not close to this person or their family so have no idea why I am feeling how I am. I keep checking social media for updates and trawling the internet to see if there was something that could help sort out the issues. The way I feel you would think that the issues directly affect me but that is not the case, I am constantly worrying and hoping she will be okay – I’m sure this cant be normal. This situation is making me really anxious and its like I want this to be resolved more than the ones directly affected. It may sound daft but its like a physical pain but I know once the situation is resolved I will eventually start to relax and feel better.

This is something that I have always felt like and has lead to me been walked over by others in the past. Prior to my diagnosis I was very good at hiding what I was feeling or thinking but since I became ill and then after this the diagnosis came I seem to be much more of an open book. I have isolated myself but the friends that did not get the hint and disappear have noticed a difference in me, I used to just go with the flow but I am a bit of a witterer  – defo driving people mad at times lol.

I cant be the only person with autism that can show empathy and care about others, it does frustrate me a bit that the picture of autistic individuals is that we lack all types of emotions and are just strange individuals that have some kind of special talent. I can assure you I don’t have any talents. There is nothing wrong with been autistic and your life should not be determined by a diagnosis, However it can be extremely difficult to understand why you feel the emotions that you do.

I do really hate how I feel when I see others suffering and wish I didn’t care so much but as much as it hurts I’d rather care about people than be heartless x