suzefricker@mylifeaccordingtome.org Available all the time, just send me an email and I will get back to you.

Disability Confident: Dont be afraid to complain

This sounds like a bizarre post to put up but there is a reason for it. I went away on holiday which in itself was great. Unfortunately, the airline and the airports let me down in a big way both getting out to Italy and coming back. I honestly never felt more isolated in my life and I was traveling with a group of people.

The thing is, I decided that I would not let that define the holiday and I decided that I wanted to make sure that the people involved are actually held to account. As such I have made complaints to the airline and the airports.

The lady I spoke to today reminded me that, most people who have a bad experience will choose only to complain to the people that they know. They will accept the negative experience as something they should not question. When you have a disability it can also feel embarrassing. The question I should put to you at this point is, how can anything get better if the person or company who has done you harm, do not know that something has happened.

So, I encourage everyone with a disability, if you experience service in any form that has made you feel isolated, out of place or discriminated against then please raise a complaint and make sure that your voice is heard.

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Ahead of autism awareness week

Autism Awareness week will be here in 2 weeks and I thought that before that happens I would share with you all my Autism story as an Adult who was diagnosed at the age of 31.

Growing up was rather difficult. I never knew how to make friends and keep them, I was easily led into behaviors that were not correct, however, I knew certain things were wrong and I would throw a tantrum if someone tried to get me to do something that was wrong. I was also from a family who didn’t have much in the way of anything so I was unable to hide behind new clothes or fancy toys. I was seriously stunted in education due to my also being dyslexic as well and would say things that I just did not understand were wrong or I would be saying one thing out loud, but what I thought in my head was completely different. Peoples reactions to things as well always alluded me.

In the 90s girls, unless they were low functioning or violent, were not diagnosed as autistic and as such, no one really looked at girls very closely for autism. This is something I am now very thankful for (as a change) since when I was a child.

I lived in a world that I never understood and what was worse, I could see everyone else around me and they seemed to cope with it and yet I wondered why I could not. To protect myself, I would create personas of what I thought a “normal” person was. This never lasted very long. People would see the true side of me and then they would realize I was different. As such, I was bullied and teased. I carried the fake personas into my adulthood. I had an image constructed of what a person in the workplace was. This included:

Someone who was never late;

Someone who agreed with everything their boss said and didn’t say no to them at all;

Even when things went wrong you had to be someone everyone turned to for help and never asked for anything in return.

To be honest, the list could go on forever. This did not work, however. I would last in a job no longer than 5 years (sometimes less) before I would tire of always being this person who I was not. I had to hide everything and could not ask for help from anyone. I kept it all inside and I would follow a pattern, I would make my self sick, then my mental health would suffer, I would sign off sick and then quit. Because of this, my CV looks rather frantic at first glance.

That was until I got my diagnosis. It was like a light bulb went off in my head and honestly, I felt like giving myself an NCIS patented “Gibbs Slap” on the back of my head. Everything I had struggled with made so much more sense to me. An example, when growing up if my routine had been changed last minute I would get so upset I would start crying. This went all the way down to small things like getting on a bus which my mum missed and the conductor had to stop the bus so my mum could get on. The shear sudden change of her not being on the bus with me set me off. Now I have my diagnosis I know that is what is called a “Meltdown”.

SO in the last year, I have had my diagnosis, I decided to make the very most of it. I promised myself that I would be my true self even in the workplace. Case in point, when advertising an event my team was running, I sat in the Atrium of the building wearing my pug slippers. I just felt that day was something I wanted to do, so I did it. I have also learned that it is OK to ask for help. I regularly go back to people now when they email me and I don’t understand what they have asked and tell them that I don’t understand. This has been liberating for me. I didn’t understand how I couldn’t understand what people had been emailing me until I realized, the more specific people are with me the easier I find it to understand. Once I realized this I found that I was asking less for constant approval of work I was doing and actually getting more work done.

I found that instead of hiding who I was and that is an Autistic Woman I was able to have conversations with people and tell them when I was struggling. Just ask my line manager, she will tell you this is true. When I am getting nervous or anxious I go to her and I said, I am struggling and she talks me through what the problem is. I know if I need support I have it from her and my entire team. And, because I am more open about it I can honestly say, I have never felt better in my life. No longer is the facade that I had built up tearing me down, I was embracing who I was.

I often get asked by people “How can an Autistic person enjoy being a Civil Servant”. The truth is, I have always been one for a challenge and that is what I tell them. I know there are things that are beyond my control which I am unable to cope with and it can lead to meltdowns but the truth of the matter is, I am still able to wake up every morning and love going into work. Part of this is because I have a job that I love but also because I work somewhere that realizes that I have differences and difficulties and allows me to embrace them. What more could an Autistic want out of life if not to be accepted for who they are? You may think this is me sounding like a recruitment poster for the Civil Service but honestly, I have never had so much support to be my true self than in the Civil Service.

Now you may now be asking what does that mean, do I come into work with a label that says I am autistic deal with it. The answer to that is no. I know there are things that I am unable to control for instance the way that I twitch my legs. I never realize I am doing it. However, I do tell people who work around me, if you see it happening and it is annoying you tell me and I can try and find a way to make it less annoying.

My Autism Story has only really started as I look into how I can improve myself and I use it every day to find ways to help others with autism get on better. So, what is the moral of this then? The answer I believe is that you must always be true to who you are. When you deny who you are you get tired and that leads down a road that is not good to be on, believe me I know. You do not need to be something you are not, with the right support you can do anything you set your mind too. It may take a little longer to get there, and there may be a few bumps in the road, I sure as heck know this all to well but you will get there.

My advice to anyone in the workplace who has autism and is not happy in what they are doing;

  1. Be true to who you are. Find ways to make sure you can bring your true self to the work you do, even if it is wearing pug slippers in the atrium of your building;
  2. Don’t shy away from opportunities that come your way for fear of a meltdown. By trying we learn and once we learn, we can grow.
  3. Do not feel ashamed of who you are and what you go through. The shame will keep you in your own facade which will pull you down eventually.
  4. Make sure you do what makes you happy and do not let people stand in your way by using your autism against you. Autism is its own superpower.

I am still learning about my autism super-powers but I will continue, no matter what to stand there and say, “So what if I am autistic, doesn’t mean that I can’t do that”

Autism and surprise

Well, as we all know, Autistic people are not very good with sudden change. That is why this one particular autistic person feels the need to say this as it was a good surprise I got. On Wednesday I went to go and see Giovanni Pernice, which I have already had a slew of people telling me “your autistic, you can’t do that” so please no one who reads this please say it to me as I will honestly find a way to block you.

The surprise came when during the intermission, I went to get a picture with one of the Strictly stars who had been on this current season who I thought was soooo amazing and I loved watching him with his professional dancer Janette Manrara. Can you guess who I am talking about? Obviously, Dr Ranj.

I was getting very overwhelmed and was almost at full meltdown mode when I got to him. I asked if I could take a picture with him and started to cry. Embarrassed by it, I told him I was autistic and that I was getting overwhelmed. He took me to one side, ( a quiet space) and stayed with me and talked about dancing and what I liked and stayed with me while I calmed down. I had explained to me that I was diagnosed last year and that I was still learning how to cope which was hard for me. I then fretted that I got a picture with him and my friend who was with me didn’t… He came back in with me when the intermission was over and went to my friend just so she could get a picture with him as well.

This was a surprise to me as I have been having meltdowns at least once a week and have had varying reactions. The good ones came from very different places. He did not have to help me. He did not have to stay with me. He certainly did not have to make sure my friend got a picture with him as well and yet, this celebrity, who I have adored watching on telly took the time to make sure I was ok. He made sure that I was able to go back and watch the rest of the show which I did. I was able to stave off a full meltdown until the very end because of him.

Dr Ranj had never met me before and will probably never even see this but his random act of kindness was so important to me as I was getting quite low about the lack of support I am getting in some areas of my life that it really has inspired me to continue in my quest to make sure that anyone who is autistic and wants to be able to do things others say that they can’t because they are autistic have the courage and the support they need to be able to do it.

Dr Ranj you are amazing and this random woman who you have never met before and probably never meet again is so very grateful to you for everything 🙂

Autism – Social Energy

Last year during International Day of Persons with Disabilities we had a talk from Genius Within and they talked about the theory of Social Energy.

Basically, it is like the Spoon Theory for Lupus. We all have social energy tanks. Those who are Neuro-Typical have larger tanks than Neuro Diverse people. This is the key thing to know. Now like the spoon theory every action that we do takes away from your social energy tank. The problem is is that when someone who is neurodiverse who has a smaller tank thing gets drained a lot quicker than a neurotypical person.

Unlike the Spoon theory, however, we can refill our tanks. The idea is that if someone who is neuro diverse’s tank dips below 30% then we are likely to be in a meltdown mode. So with your social energy, it is very important to know where you are at and how you refill your tank.

For me, to refill my tank when I am at work, I go to the coffee shop and speak with the staff there. I find the break from work and what is draining my energy is a way to refill. When I goto my coffee shop I can be a little crazy and let out stresses. When I then return to work I find that I have avoided a meltdown. For me when I am in meltdown mode I know that I go very quiet and you can’t talk to me and I won’t talk to anyone. So to avoid this I keep an eye on my energy levels.

The other aspect of this is the fact that you need to find your safe space to do it. I know one person who stands in a closet. Others go and sit on a bench doing nothing but people watch. It is your safe space to find it.

Since learning this theory my team at work and I use it a lot. They ask me what my number is at when I need a break. This helps me focus on my own needs. I think that you all need to work on this to see if it can help you try and avoid your meltdown phases.

Autism and work

There is only a small amount of people who are Autistic and work. I am one of them.

I use work as an escape from family. If I didn’t work honestly I think that I would revert to something really low.

I need to get my own place but I need help. Two weeks holiday from work and I know I am struggling from day 1. If anyone can help me not only have a small reprieve from the hell I live in with work but a permanent one, please visit: https://www.gofundme.com/6jvfv8-i-need-help