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

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”

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Review – Giovanni Pernice & Luba Mushtuk – Dance is Life

On Wednesday I went to a show. I saw Giovanni Pernice’s show called Dance is Life. I brought the tickets after a horrible year in 2018 where I was diagnosed as Autistic and broke up with my boyfriend of 9 years. SO, this was a treat to myself as I love Giovanni on Strictly Come Dancing to the point I wish they would let normal people on the show so I could possibly have a chance to dance with him.

So here is what I thought of the show:

Giovanni’s show was AMAZING! From an autistic perspective, where I had been sitting was not great as I got overstimulated which did eventually lead to a meltdown however the show its self was fantastic.

Giovanni is an amazing dancer and his partner Luba Mushtuk was so elegant and graceful. He really did tell a story with his performance. It was helped along by the other dancers on stage who were Gordana Grandosek Whiddon, Kylee Vincent, Sylvia Radziejowska, Trent Whiddon, Stephen Vincent, Krystian Radziejowska.

These 8 people took my breath away. All of them danced with a passion for what they were doing and it was so great to see Strictly style dancing off the screen and in person. As someone who at a young age and into my teens wanted to be a dancer – fate intervening and stopping me, I appreciate when you see true artistry in dance and that is what I saw on Wednesday. Even with the audience participation where two of the dancers picked up a chair and was swinging the member of the audience in the air hehe made me giggle.

I recommend to anyone who loves to watch Strictly or even loves watching the dance that watching a Giovanni Pernice performance is a great way to spend a night and for any Autistic person who is worried about a meltdown, it is well worth the after effects for this amazing performance so do not miss out!

Life with multiple disabilities

Living life with a disability is hard. When you live a life with multiple ones can at times, be unbearable. I have 4 disabilities, Autism, Dyslexia, Depression and Spinal problems. It is something that at times can regularly come into conflict with each other. When I have a really bad day with my back I stay indoors and do what I can to ease the pain. The problem comes when the bad day lasts longer than one day and I have to stay indoors for longer periods of time. I start feeling low, my mood goes and my self-care goes out the window. This then causes my depression to go out the window.

With my autism, when I have a meltdown it can have a negative impact on my physical wellbeing and then the above happens again and again. It can be quite maddening. I am trying very hard to live my life but it also seems like there is no support for people in my situation 😦 But, we can survive. We can move on. We can keep the wheels turning but it means that we must keep fighting. Life is not simple however we can survive it.

 

Being Different is not BAD

One thing I needed to get myself together to understand what it is that is “wrong” with me. However, it was not till I understood that there is nothing wrong with me I am just different to everyone else around me.

I get very emotional over some things. That isn’t bad, it just means that I can get really sad. The thing that I am sad most about is when I see an animal who gets killed in the middle of the street. It doesn’t mean that there is anything wrong with me. It means my mind deals with this kind of things differently. Same for TV shows. There are certain episodes of shows that I can not ever watch again because they make me so sad that I cry. The logic side of my brain knows that its fiction but I just can’t deal with what is being shown, example, the episode in Criminal Minds where Hotch’s ex-wife is killed by the Reaper… I can NEVER watch that episode ever again.

I have uber senses (if only my eyesight was one of them). It’s not bad, it just means I avoid situations where I am likely to be affected… It’s not bad, just means that I am different.

Differences make you who you are and that is something that we all need to accept. If we were all the same, we would not have the breakthroughs that we have in art, science, music and many other things… If we were, all the same, we may as well be wearing gray jumpsuits and all have numbers instead of names.

Acting, Singing & Dancing My Joy and my Pain

I was a little bit of a stereotypical girl growing up. One of what I know now to be my “special interests” due to my autism was the entertainment industry. I grew up with classics like Calamity Jane, Chicago, Magnificant 7, Guns of Navarone as well as amazing singers of my knowledge Karen Carpenter, Neil Diamond and Frank Sinatra (as well as my favorite Singers of my childhood) which included Steps, Boyzone, Backstreet Boys, Blue, B*Witched and many more. I didn’t want to join the entertainment industry of the money… I just loved to dance, act and sing. The problem is, this is a very neurotypical dream for a very undiagnosed neuro-diverse person.

I did what every person interested in the entertainment industry did. I took dance classes. I was in the school choir and church choir. I even tried out for full-time theatre school and went to weekend theatre school as well. Unfortunately, with all my passion I had one thing turned against me.

I will say it again. I was trying to achieve a neurotypical dream with no knowledge of how neuro-diverse I was or how to attain my dreams in a way that would suit me.  As the years went on I was knocked right down.

In dance – I was hit by a pizza delivery bike when I was in secondary school and had ongoing problems with my knees and ankles. This made people tell me, forget about dancing… your career will never happen so give up… This is something I had devoted even my education to as I wanted to take GCSE Dance. Further blows happened when I had to move school during my GCSE years and the new school I went to did not even offer it as a course. So begrudgingly I gave up that dream. Now the only time people see me dance is when I am drunk. Sometimes I still dance to music in the corner of my bedroom with the curtains closed and the door shut but it is a far cry from where I was (making up dance routines in my living room to music.)

In Acting – A massive problem I had was auditions. If I had the chance to take my time and learn lines I would be fantastic (my opinion obviously) but in auditions, you don’t have time to prepare. This was at a time when I did not know I was dyslexic. Side note- when I was diagnosed I was told I had the reading age of a 5-year-old. That was at the age of 16. Now imagine that in an audition not only trying to act but remember what you were supposed to be saying. So once again I was told, give it up… I have no hope and by that stage, I had lost so much confidence that I stopped going to auditions and shied away from even considering GCSE drama. I believed what I was told…

Singing – Well I fell in love with caffeine and that obviously affected my abilities but because of the other things and scary music teacher I lost confidence in me. I never let anyone hear me sing now. If they do it because the music on my speaker is low enough to hear.

Now at 32 I still love acting, singing and dancing but it is a blessing and a curse. Had I known about my autism and dyslexia – or as others say it Neurodiversity back when I was trying my absolute hardest to get into the industry then maybe, just maybe I would not sit here with aching for something that I always loved in my heart.

Maybe I would not have lost confidence in myself. Maybe I would have got picked for things that I auditioned for. Maybe I would be on Strictly Come Dancing as a celeb partner, but I will never know.

So to all people out there who struggle, who may think that they are neurodiverse in one way, shape or form, find out and learn how to cope with it and push yourself. Because, if you are unable to push yourself to be the person you want to be then you will always be the person that is expected of you. That is no life… I know, I made that mistake years ago and regretted it ever since.

Getting the conversation started

So this week has been National Inclusion Week and one of the main things that I have learned from this week is that we need to start empowering people to talk about their disabilities, their differences as well as things that make them unique. More needs to be done to support those both inside and outside the workplace who have a story to tell but are too scared that they will be judged.

When I was first diagnosed as Autistic I wondered how on earth I would describe it to people at work. For me it made me understand some of my behaviors from my childhood however as an adult I wondered how people would take it. Luckily I had a wonderful line manager who listened and helped me out with my understand what I was going through.

Through telling my line manager I was able to identify some of the things like my issues with volume control in my voice. Every time I am anxious I was able to speak to my line manager.  Through her support, when I joined a new team, I felt confident telling them I was diagnosed as Autistic. The main thing I tell them is that if you notice something to please tell me. If I am told constructively I am able to take it however if someone has a go at me when I struggle.

With the autism, I have come to understand some of my strange behaviors. An example is that I have gotten hooked on “A Discovery of Witches” to the point where I have watched the first 3 episodes again and again and am desperate for next week to come so I can watch all 4 episodes. Before people would tell me I am strange and odd for it but I have come to understand that there are things that I love, for instance, mystical folklore, crime, and cartoons. This is just something which is my specialty areas. Because of the Autism, I tend to fixate on them which is good to know. This is helping me learn more about me and helping me to grow. I am still working out how it all works with me and I am trying very hard to grow into a more confident me but honestly, it is a challenge.

As a dyslexic, I always knew I was struggling with school. I was often told that there was no problem with me, it was just that I was not applying myself. It knocked my confidence in everything and I honestly did not even believe I would get A-levels. It took one school to really take an interest which helps. One teacher I had in particular who helped me out was Mr. Phillips. He would go through my bad homework and give me the chance to redo them. He would not change my grade but it helped me get the work up to standard. Because of him, during my A-levels, I was able to get a B in sociology. This was a very big accomplishment for me as it is a pure essay writing qualification.  Mr. Phillips helped me out so much. I honestly wish I knew where he was now so that I could thank him.

Depression is a hard one for me especially as I live with it every day. It is hard to put into words but there are just days that I do not even want to get out of bed. I want to hide under my duvet and let the world pass me by. The problem is is that I know how bad I used to get when I was first diagnosed. I took a penknife to my hand. I do not ever want to get to that state again. I try and be open about it, however, it can be hard as you wonder how people will react when you do. I know that there are people out there who will treat you like glass and they will amend the way they interact with you which is not very good. For me when people are around me being themselves it is when I almost feel alright.

Now honestly, being 32 with spinal problems is a terrible thing. It honestly makes me think I did something bad in a past life but honestly, I am hoping that I will be able to get myself to a stage when I feel confident about it. I just hope that it would do a lot better sooner rather than later so that when I am older I won’t have extra problems.

Yet, with all I have to deal with, I do my best to get the most out of every day.  I try and live my life in a way that when I look back at it I can be proud of everything that I have done. There is still so much that I want to do with my life and hope, of all hope, that I will get it done.