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.
Am I the only one out there who gets flustered when you ask someone what they want for Christmas or their birthday and they say “surprise me” or “you know what I like”. I don’t do vagueness. Never have and never will. Now I know that that is part of my autism.
So a cheat that I have learned about is making a Wish List. But, it doesn’t stop there. You get everyone that you buy presents for to create a Wish List as well.
Take for instance Amazon. I have a Wish list set up there and I have set it so that any time someone buys something from it, it clears off. I have also asked my brother to do one, my mum to do one for her and dad, and I will be asking my sister to set some up for her, her husband and her kids. This way when it comes to shopping for Christmas I can peruse their wish list and get items that I know they will like.
This is a cheat around having to be frustrated with Neurotypical people who just don’t quite understand that the vagueness is not something we as autistic people can handle. It also means that I know when it comes to birthday and Christmas, I will get something that I actually want instead of something that I might not necessarily want or need.
For anyone who does not know how to set up an Amazon Wish List, let me know and I will skype you and talk you through it.
So as most of you know on June 29 2019 I moved into my very first proper flat. I am living on my own for the very first time. This was a very tough decision for me but for my personal safety and my mental wellbeing I needed to not be with my parents full time.
As of September 29, I will have made it exactly 3 months semi on my own. I say semi on my own because I still have to work in London so I still stay with parents when I am there. However, I try to be in my second home more then I am in London. This varies week to week due to the needs of my mum and dad as I am still my dad’s secondary carer.
So some tips I can give you for moving into a new property as an Autistic person;
- Make a list of all the things that you need to do i.e. register council tax, change your benefit address, etc.
- For key things make sure you have them from the get-go (why not try buying them in advance so that when it comes to moving you already have it)
- Temporary furniture such as blow-up sofas are very handy
- Start working out your routine from day one. Which days are going to be your cleaning days, which days are going to be your chill days. If you have to travel for work which days are best for you. All these things work out nicely.
- If you are in receipt of disability benefits and your new place includes train travel apply for your Disabled person’s railcard. (money saver)
- If you work, take 2 weeks off as holiday so that you have the time to acclimatize to the area.
- Have back up plans in place in case you need them. Mine is that my mum is going to keep me on the tenancy so that I have a room should the shit hit the fan!.
Remember as autistic people we don’t do well with change, however, the more planning and preparation you put into it we can minimize the stress that comes with moving.
So I have had a string of people telling me that I am an inspiration and to be honest I do not understand why.
For me, I am just living my life. I have learnt ways to cope. If I have a meltdown due to my autism I work from home till I have fully recovered. If I have problems with my back I work from home till I no longer need to. If I feel low I try and reach out to people for support.
The truth is that every day for me I do not know what I could be doing because of all of my disabilities. Apparently though because I want to work this makes me inspirational. Because I, with all my disabilities still go out of my way to support others, it makes my inspiration. I do not understand this. For me, I am just living my life knowing what I can and can not do and I make the most of a bad situation. I still try and do things that everyone else can do but I do it in a controlled manner. Because of this, I have to plan well in advance what I am going to do. It doesn’t make me inspirational. It just me living my life.
I don’t understand how me living my life makes me an inspiration? Can someone explain this to 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.
Life with a neurodiverse condition is hard enough however, life with two neurodiverse conditions which are polar opposites of each other is even harder.
At 16 I was diagnosed with dyslexia and slight dyspraxia. This amongst other things affects your ability to deal with sequencing.
At 31 I was diagnosed partially as suffering from Autism Spectrum Condition. This really makes me want to do things step by step and follow my routine.
Two neurodiverse conditions that are polar opposites of each other.
Normally the autistic side wins out with me and I am able to do things the way they are supposed to be done. However, 2 weeks ago I got over-enthusiastic and my ability to sequence what I am doing got me into trouble. Not only did it get me into trouble it left me feeling rather low. A few days later the autistic side of me took over and I realized where I had gone wrong but by that point, the damage had already been done.
I am feeling very shakey about this because I seem to of upset someone who I really admire and I am learning more about emotions so I am now 60/40% sure that I have upset her all because my ability to sequence fell down and the emotive side of my head decided to make a power play.
I do not know what to do.
I lost the support I had from the NAS when I moved to Chatham and have been unable to get free support set up since. Now I do not know what I am doing and am worried that I have damaged the relationship I had with this person. 😦
Some times I do not know how I manage to get anything done in my life having two completely different conditions. 😦 It is like a constant war in my head over who has control and I am going to get it wrong from time to time. How do I rectify this?