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What I wish doctors and other staff knew

I was late to be diagnosed but I have always had struggles with what some may just class as everyday things, like if I was diagnosed when I was at school I would have hopefully of had the support needed to make things easier than they were. Looking back at all my experiences so far there are many things I wish people knew or know now, I have recently experienced difficulties when visiting my GP so thought I would start with what I wish the Doctors and staff new.

Everybody is different so I can not claim I am speaking on behalf of every autistic person but there will be some similarities to what we would all like them to know or take into consideration. From my personal view there are lots of things I wish all members of staff new or at least had some understanding, I dont expect everybody to be an expert as there is so much to know but not only would it be easier for me and other autistic individuals it would help the staff.

Diagnosis or not

I am making an assumption that there are many people who have not yet been diagnosed but GP’s see a variety of people and must have suspicions about people who have not been diagnosed. When my GP said they felt I was autistic she must have suspected for a while as I cant see this idea pop into their head out of the blue. It was not handled very well for me as no explanation was given, they sent me for tests and seem to clam up and refuse to discuss it with me. If they suspected I had a broken leg and I wanted them to explain why and what this meant moving forward they would go through this with me, so why not when it comes to an autism diagnosis?.

I may have just been unlucky and have inconsiderate GP but if that is the case I wont be the only person who has not had the support at the same surgery. I am convinced that I would have found things easier if I was given an explanation of what autism is and what it was I have said / done that has made them believe I am autistic. Since my diagnosis I have changed, I am not sure why but it is like I could previously hide my quirks but however hard I try my difficulties seem to be a lot more obvious.

I firmly believe that the stress and anxiety that I went through could have been alleviated If my Gp had taken the time to explain things to me, I also think that they would have saved their time and their colleagues time as I probably wouldn’t have needed as many appointments.

Process of making an appointment

I can only speak for myself but my anxiety increases prior to visiting the surgery and it is because of how appointments are made. Over the years the process has kept changing to make things easier for the surgery and the patient, 99% of the time it will be an improvement but too many changes to what I know can be confusing and add more stress to the process. Obviously as a child any appointments were made by an adult but once this was in my hands I understood the process of calling and arranging a time, this has become quite difficult which seems to be the same for everybody. I wont claim to understand the ins and outs of all these changes but it seems there is an increase in demand and less funding so not enough drs and nurses, this will be frustrating for everybody not just the patients. Due to the demand receptionists seem to have taken on  a triage type role to direct people to right person for the correct treatment and free up more appointments, on paper this does seem to make sense but in reality it does cause issues and gives receptionists a bad name.

It takes a Dr 7 years to train and qualify as a doctor and a receptionist 3 weeks to think they are

Yes that is just a joke but I am sure it annoys receptionists and it is what people are thinking. I am sure most receptionists are nice and get a bad reputation which is not justified but there are some who seem to think they are better than they are. The negative to this triage process is that unfortunately some people could become seriously ill and potential die because they haven’t felt comfortable discussing symptoms with the receptionist. At my surgery the majority seem okay but  I have difficulty explaining things, when I feel people are not understanding me I get anxious and over time become really frustrated. This happens when I am physically with people but on the phone it is a lot harder for me to be understood. If I am in the surgery and the dr says I have to make another appointment I do this face to face and 9/10 times it goes smoothly, over the phone not so easy.

Due to the communication issues the call to book an appointment causes me to become anxious before I have even picked up the phone. If I know that I will need an appointment I will play the phone call over and over in my head based on what I think will be said, the problem with this is that the call never goes the way I think and I am fairly worked up by the time I call.

All of this is before an appointment has been made, there are a few things that I think could be Done to ease all this, they are not perfect solutions but could help people that struggle with communication.

  1. Have a note on the record so that whoever answers is alerted to the autism diagnosis and could maybe pass the call to somebody who has experience with working with individuals who have communication issues, or the person answering takes things slower and gives more time. 
  2. An option to email in providing the required information is on the email. I would find this easier as they would only need my name and date of birth to identify me, there could be then set things the surgery require. An example would be if the appointment needed is urgent, who you would like to see and roughly what times would suit. This may not be perfect as deciding if you think something is urgent or not in its self could cause anxiety worrying about what is classed as urgent, but it could be agreed that the email must contain if you need the appointment in a week or 2 or if it could wait a bit longer. The email also gives opportunity for the patient to add other info such as why you would like to see Dr or nurse or a note you wish the dr or nurse new before you had the appointment. This email could then just have a reply saying when the appointment has been made for, a reply could come within 24/48 hours it will remove some of the anxiety of waiting for the response.

Consideration for when would be a good time for somebody with autism to attend would be beneficial, an example would be when the surgery is less busy and doesn’t have say lots of children crying and running around. My senses seem to be in overdrive and every noise, smell and flickering light seems to be aimed at me. One thing that I have noticed is the lights in my doctors surgery don’t always seem to be as bright, I assume they are aways the same but I see them differently.

The appointment

Some appointments maybe anxiety inducing for people without autism but I find all appointments quite stressful. Prior to my diagnosis I had seen various doctors over the years, didn’t go that often but more than some my age, over the last 10ish years though I had found a Dr that seemed to understand me. Obviously at this point I didnt have a diagnosis but the doctor seemed to listen to what I was saying and if I was prescribed something it always worked. In the same surgery a previous Dr had messed up my medication, was rude and due to him not listening I nearly lost my job as he seemed more interested in giving me a sick note instead of getting me better. This had a big impact on my day to day life not just at the Drs so I took my dad with me to an appointment to see if he could help me get somewhere, it wasn’t successful the Dr still didn’t help. Due to this experience it has meant I am more concerned about going to the surgery but when I found a Dr who listened gave me the correct medication I always booked in with her. I never told her that I was just booking with her but I always made sure if I needed an appointment It was her I booked with and if she was on leave I would wait, looking back that could actually of been quite dangerous waiting but I felt safe and had a lot of trust for this Dr.

Consistency really does help, I have since learnt this is due to been autistic so this is something a Dr surgery should consider for all patients with autism. It would also be useful that there is a 2nd Dr that could be introduced to the patient for times the preferred Dr is not available. After it was suggested I was autistic I was given a new Dr against my wishes which caused a lot of distress and I think this should really have been avoided and should be considered for all autistic patients or patients the Dr suspects has autism. One thing I haven’t been able to understand is that it is really taking some time for me to get used to this Dr, this is no reflection on her as she is really nice but she doesn’t seem to understand me. Prior to my diagnosis I would turn up to my appointment get what I needed and most of the time I was just in and out, it wasn’t perfect even though I trusted her I didn’t want to take up their time and never said if I didn’t understand. With this new Dr I don’t understand or the Dr doesn’t understand me on every appointment, I am not sure what’s changed other than I am trying to stand up for myself more and question things.

If the surgery knew or took the time to understand more about autism I think it will help the patients and the surgery. Once I have an appointment booked I am then anxious and will be constantly thinking about the appointment, this could be anything from what time I will need to set off to prevent been late, how busy will the waiting room be, will they have the lights on full power ( Lights are a strange one as sometimes it is so bright in there I just want to leave) and then obviously what will I say and how will the Dr respond to me during the appointment. If the wait is a week or 2 since the appointment was made I will be very anxious but may not be showing it. Each day I will be building up all the worst case scenarios, these are not about any medical issues it is more about what It will be like when I arrive.

This situation could be made easier if the appointment is made at a quieter time of day, there is somewhere to wait without been amongst lots of others and if the Dr is running on time. I understand that is is not always possible to be running to time and I can normally cope with this if while I am waiting it is quiet, not too bright and I can fade away in a corner. One of the things my surgery does that is really good is the iPad type check in, as you register your attendance it will tell you if your Dr or nurse Is running behind and by how long. Using this system means that I dont have to stay in the surgery I can go wait outside and come in when my new time will be.

Unfortunately for the GP or the nurse I will have been in the waiting room or corridor getting more and more nervous so when I get in the room I am not as relaxed as I could have been. Having the same GP or nurse will help as there would hopefully have a decent understanding. One of the things I have alway been conscious of is taking up time so know I have to rush but if the nurse or GP comes across calmer and more relaxed it would help me feel calm and relaxed. The GP that I see now is a good doctor but she doesn’t seem to understand me and some of her actions give me the impression she has no idea how individuals with autism think or feel, sometimes I will say or do something and she sort of laughs at me and looks as if I am some kind of alien that is reacting in a way that is just stupid. I cant speak for others but I only say and do things based on previous experiences so it should be obvious why I am saying / doing certain things.

Consistency is key to help a consultation run smoothly for both parties, anything different can distract from the real reason for the appointment. Any distractions from the conversation can change the outcome and could result in the medical professional not understanding the real reason for the appointment and things getting missed. I remember once I was in with a nurse and was been asked a few questions when I suddenly got distracted and was struggling to concentrate, the nurse realised before I did that the window was wide open and their was lots of shouting going on outside. She asked if I would like the window shutting, obviously not wanting to cause a fuss I said no, but I then realised why I was getting distracted. I felt the nurse was very aware and it made a nice change.

Dr’s have limited time during the appointment so they don’t like it when people come in with lists and if you are to put yourself in their shoes they have a point, also a list could be dangerous especially if you spend all the appointment discussing a small rash and just as you get up to leave you mention you have chest pains. Whilst everybody with autism isn’t exactly the same one of the traits is having set ways and needing to know / fully understand things in detail, this conflicts what the Dr’s want. I have a list when I go but it isn’t really a list off things wrong with me as usually one issue has many symptoms or just prompts to remind me what to say. Every time I leave the Drs I have not said or asked everything I want which is really frustrating, this is not because I have lots to say I get distracted by everything and I just forget. Often I have gone in and the Dr has given me a new medicine, I may then mention this when at home and I will be asked what the doctor is expecting to achieve by doing this or how long will you need it for and I have not idea. I would like to know the answers to these questions but am always worried I will be wasting their time, however it seems non autistic people would have these answers and wouldn’t have worried about asking.

Miss understanding can cause lots of confusion and can make things stressful, I imagine it could also be frustrating for the doctor. If doctors could take into consideration who they are speaking to and adapt how they explain things. Everyone has a different level of ability but taking into consideration that I would have been nervous in reception, distracted by the noise and lighting and that is before I see them. Once in the room with the doctor I have to try and focus quickly and remember what I want to say, answer questions that I may not have been expecting, watch the doctor to try and gage what they are saying. Doctors will often be looking at the computer and this is something that I gravitate towards, I cant read the screen so have no idea why I stare at it but this is just another distraction.

Like many people with autism I struggle to explain things sometimes and am conscious of this which makes me get embarrassed. Unfortunately this leads to me not actually mentioning the real reason I am there, In the past I have had a doctor that seemed to know this and managed to guess. This is something I shouldn’t expect as I am sure mind reading is not taught at medical school but If a doctor sees your trying to say something it would really help if they took the lead on this and help get the correct words out.

Whilst not every individual with autism is the same having the ability to have an early appointment or a late appointment should help as it will probably be quiet. My preference would be to have a later appointment, it means if I am at work I dont have to leave in the middle of the day and just leave early. I also like late appointments wherever I am going as it means I can go straight home after which really helps as it means I can take some time out on my own. Many years ago before diagnosis I has a dental appointment mid morning which didnt go too well, it then lead to me going back into work and overreacting to something. This was totally out of character and my manager wasn’t really sure what was wrong and neither did I but knowing what I know now I had a meltdown. If the appointment had been at the end of the day this would not have happened as I would have been able to go home.

After Appointment

If tests, medication prescribed or referrals done this needs to be explained with what the next steps are. I have lost count of the amount of times I have left an appointment where I have been referred for something but dont know why, when I will hear, where I will go and what to expect when I get there. Not knowing can cause anxiety as not knowing what to expect and when to expect causes uncertainty in a world that’s full of routine. Also if you promise to do something it really needs to be followed through, I think this should go for everybody but I find broken promises extremely difficult to deal with. NT’s seem to break promises all the time without thinking of the consequences but it seems NT’s who have been promised something dont seem to feel that let down. If I promise to do something I always do it without fail, if I am asked to do something that I know I will find hard to follow through I never say promise.

Most people understand things go wrong and have to change but like many autistic individuals I find change difficult, it may seem trivial to the doctor but letting me know what they said / agreed will need to change makes a massive difference. Managing expectations makes a massive difference to how I feel and deal with change 

In Summary

Patience, consistency, understanding and explain

All seems ok but falling apart inside

I am starting to struggle with the current situation and the more I let these thoughts go through my head the worse I am getting. I don’t  think I’m the only person finding it difficult and I am sure it is not limited to individuals with autism but I am struggling to understand what I am feeling, not understanding these emotions makes it hard for me to process things.

This lack of understanding when it comes to emotions has always caused these feelings to intensify as I don’t know what I need to do to process things. When I was younger I took part in lots of sporting activities and before each competition I had these weird feelings inside by belly which my parents described as butterfly’s, never really made sense and I still don’t understand what butter flys have to do with what these feelings are. The problem with this butterfly feeling is I get it when I am in good and bad situations, so it is neither a positive or a negative. Maybe I was excited about the competitions or was it that I was nervous, I don’t think I will ever know. Perviously when  I was under a lot of stress I had this same feeling and I have it now.

What I do know is that this feeling isn’t positive as I do have some worries and this is what is causing it but I cant tell anybody because there are people dying and I am just finding things tough. It would be unfair of me to think that my struggles are anything like what others are going through. I am trying to narrow down what my concerns are and if I can box them all off individually I am sure it would help, the problem is that everything is so uncertain and there seems to be so much miss communication.

I do feel selfish as all I want is things to be normal and it is like I don’t care about others and what people maybe going through. I know when I was going through the diagnosis I did some research and found individuals with autism lacked empathy which I strongly disagreed with as I find it hard when people are having issues and get upset I cant help, however I am now thinking this might be true.

I don’t like change but if managed well I can get used to that change and put things in place but things seem to be constantly changing and nothing is staying the same for long. I think the main reason things are a struggle is due to the number of things that are different. Shops are introducing rules that are to make things safer for people but they are not sticking to the changes or they are changing them each day, what’s really confusing is that all shops have different rules. I don’t want to break the rules so am worried I may do  without realising. I have never been very good when it comes to shopping so finding new rules and empty shelves does make me panic, I feel silly as I am not panicking thinking I won’t be able to eat as there is food but I just get overwhelmed and have no idea what to buy. I went into a small supermarket near me where all the tills are self service, I am not a fan of those because I always seem to have issues with unexpected item in bagging area but I had not thought about this. The shop was not too busy but people in there doing their shopping didn’t seem to be keeping their distance and seemed to be groups of friends stocking up on food and booze. When I got to the end it seemed really busy around the self service tills but the one when you purchase cigarettes was empty. I went over and a scanned an item and a member of staff started shouting at me saying I had to join the que down the aisle she was pointing at, I felt really uncomfortable as I didnt want to push in. I picked up the items I had scanned with the rest of my shopping and walked over to where I thought she told me to join the que, but the aisle was empty there was nobody there. With her shouting at me I felt really uncomfortable and could sense I was starting to panic and it seemed everybody was looking at me. I called back to the lady to ask where I should be going as I couldn’t understand where the que was and she looked at me and walked away, I knew she had heard me but chose to ignore me. I spoke to another worker and asked where I was meant to go and she looked at me like I was stupid and pointed me to the checkout I was at previously and still had some of my shopping scanned in. I said I had been there but was told to line up and she huffed at me and said that I cant stand in a que if there isn’t one, I just wanted to get out of there and in the rush I left my shopping and came home. I get that I broke the rules but there was no que so I couldn’t stick to the rules and join a que that didn’t exist.

I have a set process for getting my prescriptions from drs and then from the chemist but that has all changed and I have been standing in line for nearly 2 hours to just collect each week. I also need to speak to a GP about something that is probably nothing but they are always saying look for changes etc but I cant just book an appointment and dont want to explain to somebody other than my dr, over the phone they wont be able to examine me and if I have to go in I am worried it will be all different. I will wait until things are normal, by that I mean proper normal not this new normal that people keep talking about

These things may seem trivial but all this change is just too much. I am following all the rules or at least I think I am as not everything is 100% clear, I am getting annoyed that some people aren’t. I am not the only person getting annoyed with people not following rules looking through social media it seems everybody is falling out and arguing with one another, if this carry’s on nobody will have any friends when this is over. I have often been told I am good at seeing things from both sides and been quite logical if friends have an issue but I am quite black and white so looking at some of the arguments online I am getting really wound up. I haven’t been using social media too much as other people arguing is causing me stress. Everybody is in the same boat and has to stay in unless they are one of the key workers who are working to make sure everybody else is looked after and has what they need and this is what is causing the issues. Whilst I am enjoying knowing that I am not going to have any unexpected visitors and don’t have to think of an excuse to not go to meet people been stuck in isn’t great, others I know will be finding this harder than me and this is probably where the tension comes from. Lots of these online arguments are just duplicated with different people and it usually starts with who has been seen out when they shouldn’t followed by comments of you were out to see this so what’s different, then its the do you know its your fault all these people are dying with the odd 5G conspiracy theory thrown in. I haven’t commented on any of these arguments but am worried about who will be talking to who when things get back to normal and will I get stuck in the middle of arguments.

Everything at the minute is just so overwhelming yet I am just having to cover up how bad I am feeling, the people I would open up to and ask for help are just too busy with more important things.

If only I could understand all these different emotions or feelings I might be able to work out what it causing me to feel how I am and at least deal with it.

PIP Tribunal 1 year after appeal

April 2019 I submitted an appeal to the DWP after been declined for PIP (Personal Independent Payment). I had submitted my application, had an assessment which after reading  the report it should have started once upon a time, declined benefit, submitted mandatory reconsideration which was also declined. My GP found me an advocate to help me as well as writing a letter to advise the report done by DWP’S medical person was incorrect. My advocate spent time with me and completed all the relevant forms and after one year I was given a date to go to court.

I cant say I have been thinking about this every day for the last year but it has been playing on my mind. I am nervous about court because It is something out of my routine and am worried I am having to argue why I deserve this benefit. I will find it hard discussing my struggles as I don’t like to discuss my issues I try My best to just carry on, In fact I have said more on this site than I have ever said to anybody.

I arranged to meet my advocate one last time before we were due to court and I was lucky to do this the day before the country was locked down. I was concerned that the tribunal would not go ahead but it was confirmed it would and it was only the face to face assessments that had been cancelled. Things obviously have become stricter and I received a text to say that it had been cancelled, the next day I received a letter to say on the same day at the same time I would have the tribunal on the phone.

I contacted my advocate who said she had never been in this situation before and I could only do my best. The letter said the Clark or Judge would call me prior the tribunal time to confirm how to join the call, my advocate suggested that I explain I was nervous and that I didn’t have the paperwork as the advocate had this. Basically we thought it was a good idea for me to try to go ahead with the tribunal and we went through a few things and I spent all night making notes, I was hoping not having the paperwork wouldn’t hinder me too much as long as I was given the opportunity to read my notes.

The tribunal was yesterday I received the call from the Clark who seemed ok but not really interested in what I was saying. I advised I was nervous, didn’t have the paperwork but was willing to give it a go I also said that my advocate would be happy to speak and offered to give her number. The Clark said she would tell the judge what I had said and to expect a call from an automated number asking me to put a code in so I could speak with the panel, She also brought the tribunal forward by a couple of hours. I was now really nervous but made myself a drink, got my notes and sat waiting for the call. At the agreed time the call came but when I answered it was not an automated call it was the Clark again. She asked me if I had decided what I wanted to do, I had to ask her to clarify what she meant as I was just waiting to go ahead. She made out that she had left it with me to decide if I wanted to go ahead with the tribunal or pull out, where she got that from I don’t know. I had waited a year for this day so there was no way I would walk away now, she seemed a bit put out and said that she would hang up and I would now get the automated call.

I sat for 20 minutes before the call came, I felt this was really unfair as I was getting more and more anxious not knowing what was happening and I felt that I may not get the call. The call came and I entered my code and then I was speaking to the Clark again, there was a bit of fiddling around and then the panel were on the phone too. The judge introduced herself and then the 2 other decision makers, it was really awkward as they were introduced and as they were they said Hi Miss x, Hi Dr ?, Hi Judge and then all said it back to one another including me but it was repeated for everybody so we all said hi to each other 4 times. I know you can’t tell on the phone but instantly I felt the doctor and the disability person were not happy, the judge seemed to be the nicer of the 3 but she wasn’t that friendly.

The judge then proceeded to tell me why I was there going through the process I had been through, obviously I knew all this but assumed it was just what she had to do to make sure I understood. She then asked if I had any questions, I just repeated what I had said to the clark that I was nervous, my advocate had the paperwork but I was ready to give it my best shot. She then asked me why my advocate was not with me, I sort of hesitated because I was just shocked she asked the question. I said we had planned on attending court together but for obvious reasons it had been moved to the phone, what came next I couldn’t believe. In a really patronising voice as if I was 3 years old the judge said “ Have you heard of social distancing?, due to this virus that is going round we are all having to keep our distance” I was that shocked I don’t think I said anything.

The judge then said that they all had some questions to ask and that I could ask questions if I wanted, I asked If at the end we hadn’t covered what was in my notes could I bring it up. She seemed really put out by this and said everything they needed was in the bundle of evidence and asked if I was aware of what was in the bundle. I repeated again that I didn’t have the bundle with me as the advocate had it but if they asked me any questions I was aware of the contents. The judge then huffed and asked if she referred to a page number would I be able to recall what was on it, Seriously what sort of question was that? I said I had no idea about page numbers but if they referred to the document such as doctors letter I would know what they were referring to. She really wasn’t happy with this and said that she wanted to speak with everybody without me listening, she explained I would be removed from the call while they were speaking. For the next 5 or so minutes I sat listening to them asking one another if they could hear, I don’t think I was supposed to hear any of this. There was lots of clicking and fumbling about and one of the panel told me to hang up as they didn’t know how to do it and they would call me back.

I sat and waited for the call getting more anxious as I felt all this messing around was going to make me forget something. When they called back the judge said that they didn’t feel I would be able to cope without the paperwork or the advocate to help me so they were going to adjourn. I was really disappointed as I had waited a year for this and they were not prepared to let me try.

I contacted my advocate who couldn’t understand why it was such a farce, they knew 1st thing I was going to be on my own and didn’t have the paperwork. My advocate was also due to attend today ( day after mine ) with somebody else who had also been told it was now on the phone so she said she assumed she would have the same issues due to the situation been exactly the same ie on own and no paperwork.

Frustratingly it seems I was used a guinea pig yesterday as they didn’t know how to use the phones and refused to speak to my advocate but today for the other person it was totally different. They allowed the advocate to be on the phone, speak on behalf of the claimant if it was referring to the evidence bundle, why they couldn’t do this for me I don’t know. I can only assume after the farce with me they probably realised that there was going to be lots of people in the same situation.

Oh well hopefully its not another 12 month wait, not sure I can cope with all this anxiety waiting to have the chance to tell the truth to discredit the representative from the DWP.

Feeling hard done to………. my little rant

Life’s not fair…….. I really hate it when people say that, usually its over something trivial or they are just not getting their own way, however I want to have a little moan as I feel like I always get penalised whatever the situation. My turn to say life’s not fair.

I have always worked even when I have been in lots of pain due to my condition. When I was diagnosed I could have sat at home feeling sorry for myself and claim benefits. I have never done this as I don’t want my disability to hold me back and without trying to sound big headed I have been fairly successful. I haven’t had amazing jobs but have always excelled in what I did and have been very careful how I spent my money. I am not tight in fact I am very generous and on the odd occasion I have been taken advantage of, but I want to make sure I wont be leaving myself short in the future. I know that I wont be able to work for as many years as most and want to make sure that when I physically can not work I wont have to rely on anybody else.

I have friends and colleagues who have a nice life and are always doing knew things and having fun with family and friends which I sometimes feel a little envious, but know if I spent my wages I would struggle later on. I may come across boring but I think I would feel anxious and not enjoy myself if I was frittering the money away. Previously I had to have just over a year off work due to ill health and couldn’t claim anything which did annoy me as I had to dip into my savings but I was careful and when I was better I started to get myself back on track and this is why I feel so let down today and am having my rant.

A previous colleague offered me some work last year on a self employed basis, this was something I hadn’t done before. I was nervous as this was the unknown but I was assured If I put the work in I would be rewarded well and I was. Each month I put away enough money for my tax and national insurance and started to replace the savings I had spent when I was unwell. I have now come to the end of my 1st year and have sent all the info to my accountant so that I can pay the tax I owe, this was a new experience for me so wanted to make sure I did it all on time.

Things seemed to be going well, but as with everything something always happens to me where I seem to be at a disadvantage. Corona virus has effected everybody and I am not blaming anybody for this but I am really upset how I feel like I am going to be disadvantaged for doing the right thing. My personal opinion is the government has been amazing finding a solution to help small businesses and their employees by offering to contribute 80% of wages up to £2500, I was a little disappointed there wasn’t anything for the self employed but thought they would do something so was just pleased for people who were worrying. The business that I invoice is struggling due to no new business coming in so we have all been watching out to see what will be offered. The help for self employed people was announced a couple of days ago and again I thought the government had acted quick and it seemed like they had put a good solution together. I was so disappointed when I found out that the year I was ill was the year they were taking into consideration for self employed so I was not able to take advantage of the grant. I just feel like all the hard work I have done this year has gone out of the window with the only option of claiming universal credit. Universal credit is offering £94, how would that pay my mortgage let alone all my other bills. Turns out I don’t have to worry about that because I have savings I am entitled to F**k all !!!! Why is that fair, If I had gone out and blown my money I would be entitled to something.

I honestly thought I couldn’t feel any worse and then I spoke to my boss. My boss explained that he realised I wouldn’t qualify for anything but my 3 colleagues would so he was going to pay me my full invoice and ask the others to take the grant. Why am I moaning? Well this offer didn’t last long as it turns out the other 3 have been fiddling their taxes so haven’t filed any accounts over the previous years so they cant claim anything. So now my boss would have to find enough money to pay us all and we are just  not getting any money in.

Why do people who do everything right and follow all rules end up getting penalised? I am so upset.

The only thing I can do is think how lucky I am compared to those who have fallen ill with the virus and with a bit of luck everybody is going to stay in and the number of diagnosed people decreases so things can go back to normal.

Yes this is a rant but I am a determined person so want to look back this time next year and see that I am in a better position by working hard to be successful. This may see like an impossibility with the struggles I am facing due to my routines changing and the other amazing quirks by autism seems to create but I can only try.

 

Support for autistic individuals during this uncertainty due to Covid 19

Over the last few weeks there seems to have been nothing but Corona virus this Covid 19 that and if I am honest I am starting to become overwhelmed with everything. As it stands a I am not worried about catching the virus I just feel a bit lost and any support I did have seems to have gone. I am not trying to be selfish and stamp my feet saying this needs to be all about me me me, but I am feeling a little lost.

Whilst I am feeling like this I am aware some people are having things a lot harder and I do sympathise but it has got me thinking about other people with autism, learning difficulties, mental health issues and physical disabilities. Due to the severity of the virus it seems everybody / everything else has been shoved to one side or at least completely forgotten about.

I have previously spoke about the shops been empty and how that has made something that is normally stressful even more stressful, it has also been all over the media how difficult it is for older people and NHS workers. Most articles and comments were supporting the NHS staff and the elderly but that’s all it is comments, all the support in the world is not going to fill the shelves and stop the selfish idiots. I have seen lots of nice messages on social media where people are offering to do things for people in isolation or having other difficulties which is great, but its got me thinking about the stuff that strangers cant do for you.

It seems non essential hospital appointments, operations are cancelled, what is deemed as essential? I cant think of every possible operation but say you have an injured leg which means you are not able to walk on it and are in a great deal of pain, this operation will feel essential to that individual. This might not be life threatening but due to the injury it is making it harder to deal with the challenges caused by the Corona Virus. What if you got a day to day illness that you would visit your GP for treatment?   As it stands you cant do anything the doctors have all closed. I know doctors don’t want to catch the virus like any of us and if they do they cant help sick people, but they aren’t helping sick people they are closed. Maybe they could look at the patients they have and work out which ones may struggle and point them in the right direction, or what I would find helpful is a email/ letter with updates. There is so much out there that you don’t know what to believe so something official from your doctor who make it a lot easier for me as I would know what’s happening and if it had instructions on what you do in different scenarios would help. I would feel confident I had some rules to follow and think I would find isolation so much easier, even if it went in for months and months. The uncertainty I am feeling now is what is causing more anxiety as I am worrying what I need to do in certain scenarios and will I end up doing the wrong thing that will have a detrimental effect on somebody else. Also elderly people tend to not like to bother people so could end up suffering unnecessarily.

It isn’t just the doctors that have closed down it seems everywhere is closing, I work from home but the office staff have been sent home. I have had not communication so no idea if I still have a job. I met with my advocate last week about something she was helping me to prepare for but she explained that was her last day in and they were closing. It seems really silly that I am so stressed the doctors and the advocate has closed down because I don’t really need them, however knowing that if I did need them and they they were there is like a security blanket and that’s what I feel I have lost.

Everything seems so much harder and all this change that I am having to deal with is really overwhelming. I am doing my best to try and understand all the info, follow the rules and try to block out all the bad information. Today we were told to stay in and most  public places have been closed, I don’t normally have an issue keeping myself to myself but I’ve never been made to do it before. My plan is draw up a plan to keep me busy and pre occupied, I will still probably be stressing but with a plan I will feel better.

whilst I am finding all this a bit overwhelming it would have hit me harder if this had been a couple of years ago. This was when I was struggling with my mental health and I’ve was getting through hour by hour. There are more people struggling with their mental health than years ago and this won’t just disappear while we are trying to deal with the virus. If all services have closed or at best offering a phone call there are going to be people really struggling, this could cause death indirectly related to the Corona virus. I don’t work in the NHS so don’t understand everybody’s roles / qualifications but I assume that mental health nurses are normal nurses too and that they have specialised is mental health, if I am right will these nurses now be working in the hospitals with individuals ill due to the Corona Virus? It would make sense especially will drs and other NHS buildings closing, but people struggling with their mental health still need help. Yesterday a main road was closed near me due to somebody standing on a bridge, I hope that people who are struggling are getting the help and support needed.

I hope people start listening and keep away from others, this will then be over sooner rather than later.

 

 

PIP…..To help those that need extra support

I have previously had a moan about the benefit system based on my personal experiences but I didn’t mention PIP (Personal Independent Payment). PIP is the benefit that has replaced DLA (Disability Living Allowance) I have never claimed DLA but my understanding is that it was paid to those that had a disability to improve their way of living and the amount paid was based on the condition. PIP is paid slightly different and it is not what the disability is, it is how your disability affects you. So basically you could have somebody that has an injured leg paid more than somebody that has no legs, this may seem unfair but I can see the reason behind it.

Whilst I agree with the idea of this it seems to have increased the number of false claims and the number of people turned away who genuinely need the help. I understand there will be some that try it on but the assessors are really putting individuals under far too much stress. Prior to my autism diagnosis I was told by my GP to claim PIP as she felt that I was struggling physically and more recently mentally and that PIP could help pay for some extra support. At the time I wasn’t really well enough to apply so my cousin did it for me, she gave me the forms to sign but suggested I didn’t read them as I might not be happy with the content.

A month or so after the forms were sent I was invited to a face to face assessment, this was difficult as I felt really anxious and I was in a lot of pain. A few weeks after this assessment I received a letter saying I was not entitled to support. I told my DR who said this was wrong and wrote a letter as well as putting me in touch with an advocate who could help me. The advocate requested the report from the assessment which really upset me due to how inaccurate it was, it wasn’t just errors it was filled with lies. The assessor claimed I had done certain physical things that doctors, consultants and physiotherapists had tried to get my body to do for the last 20 years without success. If she had made some mistakes I could maybe understand but he lies to prevent me getting help is really upsetting. My advocate wrote a letter and gathered more evidence from the medical professionals involved in looking after me, this is called a mandatory reconsideration. This is a process where we are asking the DWP to look at all the new evidence including what we had sent before and reconsider, this came back about 10 weeks later unsuccessful again.

Whilst I was not happy with this and didn’t and still don’t understand what the point of asking somebody at the same place to override a colleague I didn’t have the energy or knowledge on how to challenge this. The advocate told me not to give up and she will help me appeal the decision, this is where I have to go to a tribunal. The advocate did the paperwork for me and the DWP responded to the tribunal saying we had not sent the mandatory reconsideration in so couldn’t appeal, the courts sided with me and said my appeal was accepted and I would get a date to attend a tribunal. The DWP had to send in their evidence and what was odd was the letter they claimed the advocate didn’t send was in their evidence pack.

This was about 12 months ago and I have now finally got a date, I will have to go to court on the 1st April ( providing it doesn’t get cancelled due to the Corona Virus) I have been really lucky as I have had the support of my doctor and advocate who have done the paperwork and made the phone calls on my behalf but I have still found the year long wait extremely stressful. At times I have not been able to think of anything else which has made me anxious and due to been so tense my physical pain has increased. Some people who haven’t got the help could have become very ill as so far it has been 18 months since my 1st application and I understand that many don’t go through with the tribunal. I am sure this process is so long winded on purpose to make people drop it.

I have been told on the day I will be taken into the court room, my advocate will be allowed to come in for moral support but can not answer any questions for me. There will be 3 people challenging me, a judge, a GP and a disability expert. They will have read all the paperwork which includes all my evidence and will ask me questions to defend my application, I will then be sent out of the room while they make a decision. I have been told that if they say they will write to me that means I will have lost as if it is a positive outcome they will tell me on the day.

I only have a few weeks to wait but as the date gets closer I am becoming more and more anxious, I assume whatever disability somebody has they will be nervous but this process is not set up in a way it helps an individual with autism more the opposite. This has been awful from the start, it is confusing, long winded and is full of lies, I don’t like it when people don’t tell the truth. All this dishonesty to prevent an individual who requires extra support getting the funds that can pay for this extra care.

I am not holding out much hope of been successful as I think I will fall apart when put under pressure , life feels like an uphill battle at times.

Corona….. the virus not the alcoholic beverage served with a wedge of lime.

I am still trying to understand my diagnosis a year down the line but I am gradually realising certain things I do / feel must be because of the autism. I do still find it hard to get my head around that I am autistic and why my doctor decided to throw this at me out of the blue followed by palming me off onto somebody else, but lots of things are making sense now.

Prior to my diagnosis I have spent time in a group setting with children with autism so I do see how different each individual is and how we all behave differently, however the one thing we all have in common is the stresses and struggles with things others don’t have to worry about.

For obvious reasons there has been lots of coverage in the media about Corona Virus and then it seems everybody has their own opinion on social media, it is impossible to avoid. When Corona Virus was 1st mentioned in the news I didn’t ignore it but didn’t take too much notice as I just thought If i got it I got it, however I have started to become extremely stressed about it. What most will think is strange is that I am not stressed about catching Corona Virus, its that my routine is having to change and it is totally out of my control. I don’t think my routines are to obvious to people apart from the ones that know me well, normally they would try to accommodate my quirks and need for a routine but it seems that my routines are an inconvenience for everybody. I know that there is somethings that they cant change and just make right for me but its like the offer of reassurance is not there which was previously.

Everybody seems to have gone a bit mad when it comes to shopping for certain items, its like everybody has picked up some of the weird ways I have always had. The shops no longer have loo roll and hand sanitiser due to people stock pilling, the loo roll is not such an issue for me as I have always bought it in bulk so I have enough in at the minute but the lack of hand sanitiser is stressing me out. For as long as I can remember I have used hand sanitiser constantly throughout the day, I use it in the house, had some in my car and made sure I had some with me when out and about. Now I cant get any I feel really anxious, its not because I think I will get the Corona Virus its just a habit I have to keep my hands clean and I keep going to pick up a bottle that is no longer there. All these people clearing the shelves knowing that they are just looking out for themselves without a care for others is just inconsiderate. There will be people who use the hand gel for more important reasons than I do and If they were to ask me to not buy it or give mine to them I would however difficult I found it,

I dont like going shopping when it is busy so while all this madness seems to be going on I have stopped home, but I am worrying  when I do pluck up the courage to venture out there wont be anything left. Whilst I am picky and don’t eat what most class as normal meals I am hoping I am lucky that the random things I normally buy will be available, if it isn’t I will become extremely anxious going round all the shops.

I have also been receiving lots of messages from the doctors, these are just standard ones going to everybody about the Corona Virus and making appointments, I didn’t really take too much notice as I didn’t need an appointment and the messages were not affecting my routine. Unfortunately this changed when I received a message about prescriptions, I have scripts done for me each week and go the same day each week for them. The doctor is really good at fitting the scripts to my routine and if for any reason one will upset the routine she will explain why and work it into a way that if I need the same again it will then be on the same cycle as everything else. The message about the prescription process changing gave me a few options but non were similar to the current process and I was anxious I would end up without. I chose the email contact as I know people don’t always understand what I am saying on the phone, I didn’t hear back after a few days and was getting anxious so I resent it to the manager. She responded straightaway saying she would sort it which helped me relax. This didn’t last long as she kept messaging me about things that didn’t help me with my routine and contradicted the original email I had sent, I was getting really stressed while the emails were going backwards and forwards. I felt the way I had done my requests I had compromised in a way that would suit me but also make it easier for the doctors, I would be one less patient they would have to sort out. I contacted a family member and my advocate to explain I was struggling and how I felt I was just an inconvenience and what I had tried to do was causing more problems and hadn’t helped in the way I thought it would. Both of them were really dismissive saying I had to accept the change and the the virus is making it difficult for everybody. So Corona Virus wasn’t directly worrying me but it was having a knock on effect that was making things stressful and I was struggling to cope. To be fair a few hours after I had the meltdown the doctors called me and explained they hadn’t actually read my email and this is why there was lots of backwards and forwards, I was offered some reassurance which made a massive difference. The lady explained the impact it was having on everybody at the doctors and the difficulties they were having to overcome. I am sympathetic to what they are having to deal with but when I am in an anxious state I can’t see things from other points of view.

Listening to the TV I am aware that old people will be locked away for what could be months to prevent them getting ill, this does add a fair amount off pressure as I am responsible for my parents and other older relatives. I have no objection to getting their shopping and would also help any elderly person local to me but my concern is will I be able to do it? Doing some food shopping isn’t difficult but If the shops are as busy as the news is making out and the shelves are empty I will find the pressure a bit too much. Both my parents are currently ill with unrelated illnesses and as it stands they still have their hospital appointments to attend but I don’t know if this will stay the same. What if they cancel the appointments and they both or either one of them deteriorates what do I do?

I dont currently have anybody giving me the reassurance that helps, I feel that I am currently on my own to make the right decisions which feels such a mammoth task, what  if I do the wrong thing and it has a negative impact on somebody else’s health?

The main thing about the Corona Virus that is making me anxious is the uncertainty, if I was to list all of my concerns they would all lead back to one thing and that is not knowing. How can I plan if I don’t know what’s going to happen and what rules will be put into place. Social media is helping fuel this uncertainty as everybody has their own opinion and there is lots of arguing online. Not only are people disagreeing on what should happen some are saying that they wont stay in if they are told to, some are agreeing and others are arguing back. I know I like my own space so will find isolation easier than others but it still wont be nice but if that is the rule it is the rule. I think it is unfair that older people are saying that they wont stay in why should they, they will take the risk of getting the virus. My understanding is that vulnerable people who are likely to be the most effected if they catch the virus are to stay in, so if they dont follow the rule and they get ill they will be potentially taking space up in hospital that somebody else could have, they could also then pass it on to others they come into contact with. I haven’t got involved in any of these arguments online but reading them is making me extremely anxious.

The above covers how I am feeling and how corona virus effects autistic me, but how does it effect other autistic individuals? This is difficult for me to answer as I am not other people but there will be some who are finding this a lot harder than me. I am aware of 2 teenagers (brother and sister) who are both autistic but are reacting completely different to what is happening. One of them is petrified that they will catch the virus, they will be stuck in and everybody they care about will become seriously ill, the other couldn’t care less and is totally oblivious to what is going on.

There will be individuals with autism still at school that will have watched TV, seen on social media and also be listening to what they are told at school which could be really frightening as not everything that they see or are told is correct, again it is the uncertainty.

I do tend to see things in black and white and maybe the world isn’t that simple but if the information given was consistent it would make it easier for people to plan and it would prevent all this bad behaviour in the shops where they are stock pilling things that they probably don’t need and wont use.

As much as I find change difficult I feel we should all take some responsibility and help prevent the spread of the virus, if that means we have to stay in we stay in. We also need to be considerate to others when it comes to shopping, all this stock pilling is just stupid. There will be enough essentials and food for everybody if they just get their normal weekly shop or even just a little bit extra, think of the elderly living on a small pension unable to carry vast amounts of shopping. This shows us up to be very selfish individuals who are out for themselves with little care for others, I may have my routines but I wouldn’t do something that would disadvantage others.

Lets just be kind and considerate x

Benefits seem to just be for those who know how the system works….

I have no experience of the benefits system other than what I have seen on the TV or heard friends and family say. Most is negative, not about the actual benefit but the claimants.

I have friends that claim benefits which has just enforced my negative thoughts and feelings to how the benefits worked. I never thought I would ever need to claim benefits as I just thought I wasn’t that ‘type’ of person, however when I became ill and was not in a position to work I was told I was entitled to claim. I had no money coming in and knew that I wouldn’t be going back to work anytime soon, it took a lot of persuading but I eventually called the benefit number to explain I was unwell.

As well has having my ongoing physical disability, un diagnosed autism I was having a really bad time with mental health, often in crisis. The guy on the phone was okay but it was clear that he did these calls day in day out and didn’t take into consideration that I didn’t know what to expect and didn’t have all the answers to the questions that he needed. He didn’t get impatient with me but I had to keep going all over the house looking for what he wanted I don’t move quickly and it didn’t help my head was all over so I didn’t know where I was looking and was forgetting what he asked as he had moved onto the next question. A few days later the forms came through the post which needed filling in, I got some help doing this as I wasn’t in the right position to do this. From memory it took a couple of months from the days that I made that 1st call to get sorted and when my first payment came I had been out of work for 9 months. I had left it about 6 months before I did anything as I wasn’t Well enough to do anything prior to this. The amount was about £70 per week, whilst I am grateful for any help I can get I don’t understand how I am supposed to pay my bills with this, My mortgage is more than £70 per week.

Due to my physical disability I always knew I wouldn’t be able to work as long as I am expected to before I can claim a pension so I have always obsessed about putting money to one side to make sure that I can look after myself. Prior to claiming the benefit and once I received the £70 per week I was using these savings to pay all household bills and mortgage. What I would have done if I hadn’t have saved the money I do not know, this £70 per week is not what my understanding of the benefits system was. From all the TV programs I have seen people get that much money that they say it isn’t worth going to work as they will earn less, I am still confused by this as I have a friend  who said she would need to have an income for 45k per year to come of benefits and work.

I received this benefit for about 2 months and I was called to a meeting when I had to meet somebody who wanted to assess me, I was really nervous as I am not good with meeting new people but took a friend with me and just expected the dr I saw to see how unwell I was. This experience was horrible, I turned up on time and had to sit in a really stuffy waiting room which didn’t smell too fresh and was really uncomfortable. I was in lots of pain and was also struggling with been out and about as wasn’t leaving my bed due to the decline in my mental health, about 40 mins later than when I should have been seen the lady in reception said that they were running behind and we wouldn’t all be seen. My first thought was panic as I really didn’t want to have to come back, however there seemed to be a rush of people who were willing to rearrange, I thought this was odd so started listening. Each person was offered an appointment within the same week and everyone said they had other things on so were given an appointment 2 months away. I was relieved thinking that I would be stressing at home making myself more ill if I had had mine put back, however I have since realised why there was a rush of people wanting to have their appointment put back.

I was eventually called in after waiting about 1 hr 20 mins passed my appointment, no apology was offered. I gave copies of all my sick notes and discussed my existing disability. I was finding it really hard to discuss things but my friend said I did really well and she felt I answered everything. 2 days later I got a call from a guy who spoke very fast was rude and said my benefit was getting removed and I had to go to work, I was in crisis when this call came through and I was so upset. It wasn’t the money as that wasn’t exactly helping, it was that some stranger was saying that I was well enough to work. I explained my GP who knows me well had given me sick notes and I was told that the assessors are trained and they felt I was well enough to work and that they over ride anything a doctor says. The attitude of the person I spoke to and the fact that I was been accused of lying I just became more poorly, I have worked since I was 16 and have never claimed a Penny before and couldnt understand why I was get treated so badly. This is why so many people wanted their appointment putting back, they knew it was a guaranteed payment for at least another 2 months.

There was nothing I could do, I wasn’t well enough to work and don’t have the knowledge on how to fight this decision. What I don’t understand is how can people claim benefits all their life and somebody who has work all their life got £70 a week for 2 months, my feelings towards benefits wasn’t changing for the better.

I was lucky I guess that I had some savings for when I have to stop working that I could use to live off, I say had but that is now spent and my retirement is not looking good, I feel really let down by the system.

Fast forward a few months and I was running low on funds and had no choice but to try and go back to work, luckily I wasn’t as ill as I was previously but my dr and mental health team were saying it was too soon but they are not the ones that had no money to pay the bills. I was told to try to claim job seekers benefit until I got a job, I really didnt want to do this but was pressured into it. I made the phone call and then the forms came. I started looking online for jobs but nothing jumped out at me and I couldnt decide what I wanted. I have never really let my physical issues hold me back but every role I found I gave myself a reason why I couldn’t do it, this was down to not been well. I then received a letter in the post saying I had to go to the job centre to meet a work coach that had I had been assigned to, initial reactions was to panic and stress about having to meet somebody new who wouldn’t understand my physical limitations. I read the letter over and over again and managed to build myself up to attending this appointment.

The letter explained that the work coach would help me find work and would offer support needed, I have never been to a job centre before but even though I was worried about going I was looking forward to meeting with somebody who would help me get back into work.

The job centre is not easy for me to get to as I dont do public transport as I cant cope with  the stress of been in a confined space with people, germs and the physical pain I am in when the bus jerks. I set off really early in my car but had to park on the outskirts and walk in, lukily my pain levels were not at the worst and if i took my time I would be fine. I got to the address on the letter and I couldnt find the job centre which really stressed me out and I started to panic, it turns out the address on the letter wasn’t exactly correct due to the entrance to the public been on a differnt street.

Entering the job centre was very daunting it was extremly busy and had security guards who seemed to be fueling the confrontations instead of keeping the peace. As I entered I was approached by a lady who walked towards me really fast and asked me what I was doing in an aggressive mannor, I could feel myself starting to panic and I got all flustered. In the end I just showed her my letter and I was told to take a seat near a desk where the work coach was sat. I was sat there for nearly 2 hours and my work coach kept standing up and going and fetching others but never shouted my name. He eventually realised that I had been sat there and came to see what I was doing I explained I had an appointment that was 2 hours previous and he asked who it was with. When I told him that he was my work coach he got really defensive saying that he wasn’t and how he was up to date and I wasn’t on his list. I showed him my letter and he took it away, he came back saying there was some error as I wasn’t on benefits yet and that this appointment only takes place after that, he then refused to give me my letter back. I really wanted to keep this letter so I could ring whoever I needed to and it would help me explain what had happened and get somebody to help me, he then said if I waited 20 mins he would see me. He went back to his desk and I took a can of pop out of bag, it was red hot in there and I had been sat for hours. A security guard came running over and snatched the open can from my hand saying I would be thrown out as I was not allowed to have that drink, I didn’t see any signs. He was really intimidating , I wasn’t causing any issues I was just sat there but he decided to make an issue out of nothing. By now I was just wanted to get out of there.

I was ready to just walk out when the work coach came over and gave me some forms to fill in , I had now been there for 3 hours. I started to fill the form in with the basic details name, address etc, there was also a section asking about work history. I then came to a page that said it should be filled in with your work coach so I just left it blank. The work coach called me over and started going through the forms and when he got to the page I had left blank he asked me why I had not done it in a way like a teacher would if you hadn’t done your homework. I explained it said at the top in bold letters to be completed with your work coach, I then asked him who my work coach was as I thought it was him. He said he is the work coach but doesn’t fill the forms in with people as he doesn’t really know how to do it. He just ignored the form and said I should look on job board and look in the newspaper for jobs, I had now been in the job centre for 4 hours to be told the bloody obvious. He then tried to send me on my way and I was just gobsmacked that this meeting with a work coach was nothing like what I expected. I didnt think we would be sat having a brew but I thought I would be having a conversation about my career aspirations while taking into consideration my limitations but it was just a waste of a day which left me so overwhelmed the thought of job hunting made me feel sick.

After the experiences I had with the benefit system I didnt even call back to try and get job searching benefit. I found myself a job and went back to work, My doctor said it was too soon but I felt I had no choice. My doctor was right I managed about 11 months doing the job badly) but I wasn’t well and had to quit. I knew that I couldn’t attempt the benefit system again so I do think myself lucky that I have managed to set up self employed doing some work when I feel well enough for an old manager of mine.

This experience was a real eye opener, I don’t think my opinion of benefits has changed, it still seems to be people who know what they are doing are the ones who benefit from the benefits and manage to be given enough to live off  so they dont have to work. I also think that the job centre staff need to have a good luck at how they treat people as that day will stay with me forever and they didnt help me gain employment if anything they made things harder for me.

Over the years I had worked hard to put me in a position that I would have money to live off as I got older and was unable to work, this is now not the case and I do now worry what I have ahead of me. I can not be the only one in this position and each day when I see lives are lost I can see why people felt they had no other choice.

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.