A routine to an autistic person is as important as insulin is to a diabetic. With out a routine we can feel lost and are more prone to meltdowns as we are unable to deal with change.
The thing is, each autistic person handles change at various levels so the routine that works for one may not work for all.
So tips I have picked up for myself are:
- Work out how much change you can handle before you plan your routine;
- If you can’t handle change on a big scale make sure your routine is not so strict that you can’t allow for unfortunate incidents;
- If your routine has to be flexible like mine does as I am a back up carer for my dad, make sure that you plan far enough in advance so that you can handle the upcoming change.
- Understand that something may happen beyond your control and that if you are struggling to deal with it, it’s fine. Seek help and someone to talk to.
These are some of the tricks that have helped me.
Firstly this saying has just been explained to me. It means that there is something there that people are trying to avoid talking about. For my entire life, people would say this to me and I would say where is the elephant. I would even start looking for one. People thought I was being funny but I just didn’t understand what they were talking about. I honestly could not understand why the elephant would be in a flat in London.
So the elephant that I want to talk to you today about is the fact that we have a large number of women today who get either partial (like me) diagnosis of Autism or full diagnosis of autism in their adult life.
Those who are lucky enough to get the full diagnosis are better placed than people like me because you do not have to explain why you only have a partial diagnosis. Support can be easier to get and you do not have to jump through as many hoops as I do. I literally have to take my diagnosis report with me everywhere just to highlight the section on the report that says “In my clinical opinion Suze is highly likely to be on the spectrum but without the early year’s information we can not say for sure.” That sentence is the only reason I got any help because the person who did the testing also said she would benefit from the support afforded to someone with a full diagnosis.
But here is where we get to the elephant. The support for an adult with a full or partial diagnosis is limited. Even to the point that there are organizations who provide assistance dogs to autistic children but not adults. The support you get is limited depending on where you go in the country for adults and some even charge. This is great except for people like myself who is unable to afford it as I want to work. I am a disabled person WHO WANTS TO WORK and because of this, I am unable to get the support I need. I am even disbarred from some benefits because I want to work so can’t claim incapacity benefit or housing benefit.
Is it my fault I was born in a decade where it was considered that girls could not be autistic? No, it is not. Why have they not changed the process for diagnosis where they can say a partial diagnosis of autism? Women who get diagnosed as adults may find themselves being unable to provide the early year’s information. Again, why has it not been changed so that those of us who do have living relatives but can’t trust them to be honest for whatever reason be given the questions they need to find out and ask them themselves.
I have found out the following;
- I was 3-4 week premature
- No complications during my birth
- I was a very small baby
- I was unable to be breastfed
- I had issues learning my left from my right
- I had issues learning to tie my shoelaces.
- I learnt to walk faster than my siblings because I didn’t bum shuffle
- my reading was delayed growing up
When I asked if I could give this information to the psycologist I was accused of trying to manipulate the results.
More needs to be done to support those of us from the forgotten generation. We should stop letting ourselves be out of sight out of mind. It is unfair that we do not have the support and I mean proper support.
Just moving into my own place it took me 3 months to figure out what I needed to do in regards to setting up council tax because I was getting confused. I had no help. It got to the point that I had to call the council in tears. Tell them I was autistic and that I needed help to understand what I needed to do before anyone was able to help me.
Seriously this is the world we live in.
I created a gofundme page so that I can start paying for support to help me with my independence. The only people who seem to be offering support for help with my needs are people who want me to commit money laundering. Seriously What the FUCK.
I need home care support to help me;
Buddying to help get me out and about;
All of this cost and I have no money because I choose not to be a disabled person who lives on benefits. I want to work. However, it seems that the only way I can get support for free I need to not be working 😦
I am not willing to commit a crime to get the money I need.
I feel like giving up.
Again I have been rejected for help and support for my disabilities. Everywhere I was being bogged off too I have tried to contact and in over a month they have not gotten back to me.
There are potential benefits that I could possibly apply but no one is telling me how to apply for them.
How the hell am I supposed to get support? I will have to pay for it now and honestly how the hell am I going to do that? £725 per month in rent £300 in bills and £370 to pay for a loan. £200 spare of my salary and £400 in disabilities which comes in once every 4 weeks. This does not tally with my other personal bills will I pay £250 a month to. I only get £1600 per month so I have to live off my benefits for food and other things so that I am able to get support.
I am an abuse survivor and no one is able to help me. I am seriously angry and upset.
Honestly, how can I continue to support other people when I get zero support in return. I feel like giving up.
The world is a scary place for me. I am trying very hard to live my life as someone who is a productive member of society but it can be difficult when it seems that everything is set up against you. When the world is apathetic to the people who do everything that they can to live life outside the image that is placed on them. When you look at people and they label you names such as #WelfareQueen etc and all you want to do is scream and say, “WHY CAN YOU NOT SEE HOW HARD I FIGHT?”
I am feeling this at the moment because of the lack of support I have had in my life. I do everything I can to get the world to see things my way however, it is a world that turns their back on me and kicks me to the dirt 100% of the time.
I turned 33 on Sunday and what I got for it was more debt to my family and no presents. I had to move because of a potential issue that could affect my wellbeing and no help or support from councils. Yet, do I still turn my head away? No. I always reach out to people to see if I am able to help. I do what I can to raise awareness on disability everywhere and yet the world tells me to get fucked.
All I have ever wanted to do since I realized that I was someone who got screwed over by being born in the decade I was when medical science was not where it should have been and so I got missed, is to make sure that when I leave this world I leave it a nicer place than when I found it. This can be very challenging at the best of time however I am trying to get sorted one person at a time.
Some times, however, my faith in my mission feels like a long shot. When I realize that there are people out there who just do not give a damn.
Wondering whether you have clocked on to what this article is going to be about by the title, please let me know if you did.
I am dyslexic. This is something I struggled with prior to diagnosis to the point that I needed a lot of support to get me to a standard where I could even get A levels. To give you an idea. When I chose my A levels I had only been diagnosed for a year and had already had to redo my GCSEs once. One of the courses I chose was Sociology which was a brave move as this subject meant LOTS of essay writing.
I don’t know if you know but sociology exams (the essay part) are graded out of 20. When I started the course my homework essays were getting 3s,2s or 1s out of 20. On one fateful day, I had really struggled and I got a 0 out of 20. My world seemed very dark when I got that assignment back. I thought, “you know what I shouldn’t be here. I am dyslexic what made me think that I could do this, I just can’t do it, I’m so dumb”.
But, I got help. This help came in the form of my teacher who knew I was trying so hard but just could not seem to improve. So, he offered me a solution. Every time I got a bad grade on my homework, we would go through it during a free period that we both had at the same time and he would show me where I went wrong. He would then give me a 2nd opportunity to rewrite the assignment. This was not to change my grade but to make sure that I had an opportunity to stick what I needed to learn in my head.
Slowly I started seeing my grades go up. I went from 1s, 2s, and 3s, to 16s, 17s and 18s out of 20. This gave me so much of a boost that when I went to sit my exams I was able to sit them with confidence I had never had in any exams previously. My end result was a B in Sociology. I could not believe it. I was so happy I went and thanked my teacher for my result.
Learning disabilities don’t mean that you can’t do something. It means that you need to find a way to deal with it and work around it to get the best out of yourself. Some suggestions for you to do:
- Dragon Software (or any other speech to text software)
- Read and Write Gold (or something Similar)
- Spider Diagrammes for things you need to learn so that you have a visual map of what is needed.
Don’t give in to the Imposter Syndrome. I ask anyone out there with a learning disability to challenge yourself to find ways to make things easier for you. I did it and I can honestly say at the age of 16 when I was diagnosed I couldn’t even imagine getting my GCSEs let alone a B & 2 Cs in A levels. You are not alone, ask for help.
So i found out that i have been nominated for a Sunshine Blogger Award which i was amazed to find out. I have never known about this since I have only recently started getting a bigger following. This is really humbelling for me to see. I have been trying to use my blog to show what life is like having disabilities. Not just the disability related issues but life issues as well. The person who nominated me was Charli Dee https://lifewithcharli.home.blog/charli-dee/ . So i humbally accept my nomination.
About the Sunshine Blogger Award
The Sunshine Blogger Award is an award given by bloggers to their peers to honor fellow bloggers who inspire and spread positivity through their blogs.
Rules for the Sunshine Blogger Award
- Thank the person who nominated you and provide a link back to their blogging site.
- List the Sunshine Blogger Award rules and display the logo on your site
- Answer the Sunshine Blogger Award questions.
- Nominate 11 other bloggers and ask them 11 new questions.
- Notify the nominees about their nominations
So the questions that my nominator has posed are:
- Which of your blog posts is your favorite? Imperfectly Perfect: Life with Turner Syndrom
- What is your favorite color? I prefer purple because it is very calming.
- What is your favorite food? Pizza
- Do you have a secret talent? I do not know what my secret talent is. People tell me I am a baby and dog whisperer haha.
- Which season (spring, winter, summer, fall) is your favorite? I love spring and fall because it is not too hot and not too cold.
- What song would be your theme or anthem? I do not have a theme song. I listen to every thing but honestly things just catch in my head.
- Who is your favorite celebrity? There are too many to count. Some to include Billy Burke, Shemar Moore and Tom Selleck.
- Do you have a favorite book? I really struggle with reading but one book that i do go on with is When Hitler Stole Pink Rabbit.
- Do you have a favorite movie? I love The Guns of Naverone
- Do you have a tv show you’re binging on right now? Friends
- Is the one thing you love most about blogging? I love meeting new people and I also love sharing my stories.
I havent really spoken to many people and I have far too many people I could Nominate. I would nominate everyone who follows me. So I will start with one for now and work my way up.
- What got you into blogging in the first place?
- What is your favourite Book?
- What is you Favourite Song?
- What helps keep you calm?
- Where would your dream place to live be?
- What is your favourite flavor of icecream?
- If you had a superpower what would it be?
- If you could do anything what would it be?
- Who would you most like to meet living or dead and why?
- If you won £1000000 what would you spend it on?
- If you could be on any TV show what would it be?