Don’t apologise for me

There are certain things I believe you shouldn’t do when it comes to autism and a big one is never apologise. Whether you are the person with autism or are with someone who is please don’t apologise for their autism.

Firstly, I’m not sorry for having autism. My autism makes me spontaneous, fun, slightly eccentric, full of fantastic quiz knowledge and many other things. So, on the days when my autism does something not perceived as socially acceptable, I’m not going to apologise for it. I’m feeling overwhelmed so leave a party early because that’s the best thing to do for my own well being? Not going to apologise. I’ll explain and go home but I’m not going to apologise for it.

Secondly, if I’m not sorry about it then you don’t need to be either. We’re out for a meal and my meal arrives with something on it I specifically asked not to have then damn right I’m sending it back and expecting a new meal. Mistakes happen but I don’t need someone to apologise on my behalf because of someone else’s mistake. You don’t see me apologising for you. Sorry about my neuro typical friend, he’s constrained by what society expects of them and that makes them incredibly boring when he won’t jump on a swing at 30+ years old!

Thirdly, if your child is having a meltdown in the middle of the street or shop and creating a huge scene then don’t apologise. What do you have to apologise for? Ignore everyone else who is tutting, staring and generally not helping the situation. They don’t exist in that moment. You and your child exist and are the most important people in that moment, do what you need to do to calm them down to make yours and their days easier.

Life with autism can sometimes be stressful enough without then taking on the little added stresses of apologising for the things you don’t need to apologise for. Autism is not going to apologise for existing, you don’t need to either.

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Forgetfulness

I haven’t written in a while because I had completely forgotten to write anything. In my mind I had written something not that long ago but realised it’s actually been months and not just a week or so.

I am unbelievably forgetful. If it’s not on a list it won’t get done, bought, tidied etc.

Because I haven’t written for a while it does mean that there are different things in my life that seem to have happened all at once. I moved house to save money and to get a fresh start in a bit of a different area, I transferred stores with my job to become part of a more supportive team, I am in a new relationship (which is a whole story within itself) and I made the decision to drop my volunteer position for my own health. All of these have not been simple tasks but, now that I am on the other side of it all, I am in a much more settled state of mind.

I did have a meltdown yesterday but it only lasted a few hours because of the better support system I have around me, without that it could have lasted an indefinite amount of time.

Anyway, I have completely gone off the topic of forgetfulness.

Whiteboards, pens, notebooks and random scraps of paper are my lifeline and are my ability to function day to day. Without them my spare time would be spent playing games and watching tv while my pile of unwashed dishes becomes increasingly reminiscent of the tower of Pisa.

The best thing I have done is get myself into a routine as I remember more through repetition. I wake up at half 6 every day and go to bed around half 9 every night and am usually asleep around 10. This gives me time in the morning to relax and be fully awake before getting on with my day.

I have two white boards to keep me organised day to day. My large whiteboard has the whole month on it with work shifts, what day to change my cats litter, when to do the shopping etc and my smaller whiteboard is for daily use. I write on it what tasks I need to get done that day and any other things that crop up that I will need to remember.

All this organisation doesn’t mean I’ll get everything done, some days I don’t feel upto anything and I need time to hide away but that can have a terrible knock on effect as then I have more to do on other days so I do try and give myself manageable stuff each day.

I have also learnt not to feel guilty about having a day to myself when I do need it as it is never wasted. Sometimes that day is needed to be able to function the next day and the day after and the day after that.

And I seemed to have diverted off topic again so I shall leave it at that tonight and try and talk about the positives in my life next time.

Relationships

By ‘relationships’ I mean more the intimate kind rather than other types of relationships in this post because both types are minefields of their own!

I haven’t seemed to have found it difficult to get into a relationship with someone, it’s the keeping it going that I have difficulty with. I think that’s mainly because, as a female, I mask my autism very well and come across as quirky, different, unique etc but once I’m in a relationship that’s when the difficulties begin.

I seem to go through a particular pattern when in a relationship. I’m full of energy and bubbly at the start, which causes high expectations from the other person, then I become drained and tired and don’t find myself doing as much or making as much effort, arguing kicks in and that’s always the beginning of the end. I always dwell on what I could have done and what more effort I could have put in etc and I swear to change and try more next time but it never happens. One of the things about getting a diagnosis is that maybe the next relationship will have more an element of understanding with it rather than the other person believing I don’t do things because I’m lazy rather than I’m not doing it because I’m having a meltdown.

The worst thing to do in this situation is blame yourself. And, believe me, I have been there in the past. Also, don’t let anyone else blame you for the things you can’t control. You can not cure your autism, it is not your fault and there are limits to what you can do to change your behaviour patterns. If someone else’s actions cause you to have a meltdown or not be able to cope with things and they know this then it is not your fault. It is there’s.

Of course there are things you can do yourself to help limit the times you can’t cope. Ask your gp for help and support. Look at your local community to see if there are support groups. Look online for charities to contact for help. As well as reaching out reach inwards. What things you do make you calmer? What do you enjoy to do that you can immerse yourself in? For me, it’s simple things like books, computer games, reading or a soak in the bath. Doing these things helps me to prevent meltdowns but having to share my time with someone else makes it harder to find the time to do them. But it’s best to communicate these things to the other person and explain that it’s the personal but that you just need to go off and do what you need to do.

Ultimately, I need to find the balance between me time and us time for any future relationship I may have.

Life gets in the way

I haven’t written anything for a while because, as the title suggests, life got a bit in the way.

First major thing to happen was that I completed my college course but finishing everything off at the end took a lot out of me and made me quite drained for a while.

Around doing all of that I was also working 30+ hours each week in total, also making me drained and needing to relax to recharge.

And then, more recently, my relationship has broken down and is no more. I am once again single but relationship status is definitely something for a different post as it is a much more in-depth discussion. On the positive, the splitting up decision was mutual and we are still friends so I don’t really feel like I have lost anything out of my life at least.

This was just a quick post to update as I’m awake earlier than I should be so have a little bit more time today to catch up on things (currently in an up mood with no meltdown in sight so I am taking full advantage).

It’s Getting Better

I don’t mean it’s getting better in a personal sense because, well, that needs to be a whole different post. I mean in the sense of the help and information out there in the world.

I think the main reason I wasn’t diagnosed with anything as a child is because of the lack of information. I hadn’t heard the term autism in my youth but my mum possibly had (she worked as the manager of a gp practice when I was young). Growing up I came across it briefly but autism wasn’t something girls had, only boys had autism. Well, that was the information at the time that was out there and it’s still harder to diagnose autism in females than in males because it presents differently in the different genders and girls seem to mask their autism quite well.

Luckily for me, and probably a lot of other people out there, there is more information on what autism is and how it presents in girls compared to the way it does in boys. It’s a subject that people are talking about more but I still think there’s a long way to go when it comes to women with autism rather than a child of any gender with autism, which is wher I feel a lot of the emphasis is being placed.

I’m probably not the best person to explain any differences as, being autistic, I can only see things from my point of view and the way I think and feel is my normal so seeing autism from the point of view of a different gender is impossible for me to envison.

There is, however, a great article online – https://www.autism.org.uk/womensday – which helps to explain what it is like to be a woman with autism. Rose describes what it is like to be her and I can relate to everything she talks about. Anxiety about social situations, being overwhelmed by senses and other difficulties are a part of everyday life for me. I completely understand where she’s coming from when she talks about liking her drink a certain way. I rarely let someone make my cup of tea for me because it has to be made a certain way and has to have the right amount of milk and be brewed for the right amount of time or it’s just not right and I can’t cope with it. This then brings on feelings of frustration, which then becomes a slippery slope of emotions that descends very rapidly into having a meltdown.

But it is getting better and things continue to improve because people continue to talk about it and get the information circulated.

I know things will get better for me with time. I need to get to that point where I have an official diagnosis because, without it, there is no support or help for me to access.

Thank you Anne

A couple of months ago I was watching I’m A Celeb on ITV and one of the celebrities taking part was Anne Hegarty, better known as The Governess from The Chase. I didn’t know that Anne has autism and that she wasn’t diagnosed until adulthood either.

Anne being on the show was a fantastic voice for adults who are living with autism. We saw her at her worst, breaking down because she was completely separated from all the creature comforts she needs in her life to be able to function,  but we also saw her as the intelligent, funny lady that she is. I identified with the way she described what it felt like to be her and how she lives her life. I wanted to know more.

Anne seemed to have a hard time coping with her autism before she became famous and she seems to have been lucky that someone stepped in to help her and she got her life on track. One bit of information really stuck out for me. PIP.

I had heard of PIP before so knew a little bit about it. PIP is almost the same as disability alllowance but I hadn’t realised you can also apply for PIP regardless of employment status. This felt like fantastic news for me, someone who struggles financially because of the limitations autism places on me.

The first step to PIP is ringing up for a form to fill out. Ah. There’s the first brick wall. I have had this information for over a month now and still haven’t been able to bring myself to call. There is an option to email but you have to explain why you’re unable to call and ‘because I don’t like talking on the phone to people’ doesn’t feel like a good enough reason.

But, if it wasn’t for Anne, I wouldn’t have known that I may be eligible for PIP. Other people struggling may also be able to qualify for it as well. If you’re struggling because of any hidden conditions https://www.mentalhealthandmoneyadvice.org/en/welfare-benefits/what-are-personal-independence-payments-pip/how-do-i-claim-pip/ will give you all the information you need, including a step by step guide to filling the form out.

Personality or autism?

As I am in the early stages of understanding myself now I have the knowledge of being on the autism scale I still have very little sense of my own identity. I’m trying to figure out which parts of me are because autism makes me this way and which parts are simply my personality.

There are some instances were I am fully aware that it is autism. For example, a couple of years ago it was a perfectly normal day and I was looking forward to a relaxing soak in a hot bath. My mind was so focused on there being nothing better than this one activity right at that moment so I filled the bath tub up to how full I like it and dipped my hand in to check it wasn’t too hot. It was cold. During the water running the boiler had gone a little haywire and so I emotionally plummeted. I pulled the plug and burst into uncontrollable tears on the bathroom floor.

I’m not an overly emotional person, in fact people have described me as being cold hearted, so I know that it’s not part of my personality to burst into tears over something as small as the bath water being cold. I know that having a good day can sometimes be a ticking time bomb because something then going wrong makes me crash into a feeling of despair.

But what about the other aspects of what makes me? Do I like to spend time alone because autism means being around people drains me or is it because I prefer activities, such as reading or writing, that tend to be solo activities because that’s just a natural part of my personality that I would have if I wasn’t on the scale? Do I not like most comedy films because it’s not my preference or is it because I don’t quite ‘get’ the jokes because of the way my brain is wired?

All of this, for me, gives me a lack of knowing who I am and it makes me feel like I am simply plodding along each day, just getting by until I finally get my appointment through to see a specialist and get access to help and support.