I meant to write this one and post it after the first but illness and strong cocodamol got the better of me the past few days. Now where was I….
I was called into the room and the lady doing my assessment could not have been more reassuring and calming, which was the biggest help at that point. She explained what was going to happen and asked me some questions on my knowledge of autism, what my hopes and fears were for the assessment and those kinds of things and then we dived straight into it. I was right in that it was going to be a lot of talking, 90% of the assessment was questions being asked and discussions on topics being had and then there was a small practical assessment as well. Because ADHD is quite common with people also diagnosed as autistic there is also a little bit of testing for that as well, which also helps but I’ll get to that part.
I was very lucky in that, after everything was finished, I was asked if I wanted to know the result there and then. Of course I was very eager to find out. Based on the 2 and a half hours of assessment I was definitely Autistic and I also showed signs of ADHD. To me that was fantastic news but also a little bit shocking as I had never thought that I could possibly have ADHD as well, to me that was something people had who has loads of energy and I was the opposite but I was wrong in my thinking. There was a bit more talking on what this meant for me and I was put on the waiting list to get a formal ADHD diagnosis (something that can take 2 years in my area due to lack of resources).
Now I have another wait to get the official report but I can finally say that I actually have ASD and can start looking to the future and looking into the things that work for me.
It was a huge relief that I got the answer at the end of my assessment but it doesn’t always go that way, I was warned at the start that it’s not always clear cut and the evidence needs to be reviewed sometimes but the way I answered everything and the way I responded in the practical tests is classic autism apparently so it was easy for her to give me an answer.
All the information given to me during the assessment is still sinking in days later but I’ll also receive it all written down in the report, along with some resource information as well. My plan now is to get through the next week of more assessments and appointments and then I can breath and move forward.
Even though my plan for this blog was to document my life while waiting diagnosis doesn’t mean I’m giving up on it, there’s still a lot to navigate and a lot of information I feel I can still share with people so I’m not going anywhere just yet.
Firstly, apologies for having not posted anything recently but life has been a bit hectic and everything seemed to be happening at once. I’ve had numerous forms to fill out for various departments about how I am affected every day etc etc so I’ve been a little bit fed up of talking about Autism to be honest and everything was also getting a little bit overwhelming.
On the 5th of this month (yesterday as I am actually typing this) I finally had my autism assessment and I’ll get round to the details but I wanted to write a little about the build up, my feelings beforehand and what I was thinking.
I hadn’t been told what was going to happen during the appointment apart from it wouldn’t be anything invasive and to allow three hours for the assessment. As the time approached I became more and more nervous. I had to travel for an hour to get to where it was taking place, it was somewhere I had never been before and it would, obviously, be an appointment with someone I had never met before. These are three things that cause enough anxiety on their own but mix them all together and throw in having around 6 hours sleep and being on meds that make me exhausted all the time and it wasn’t a good combination.
Luckily, I was heading to a specialist appointment, which meant these people know what they are doing and what type of anxieties can arise from an appointment like this and they help you to be prepared. When receiving the appointment letter I also received a full sheet of information including directions on how to get to the centre, a picture to give a visual representation of the centre and what type of things to bring with me. This one sheet was a huge help and a lot of my fears were put to rest by it.
As I am someone who is always overly prepared I had a backpack full of things I ended up not needing but I felt comforted by just having them there with me plus it’s always better to have and not need than need and not have. I was also a good twenty minutes early to my appointment but my other half was with me so he tried to help me keep calm and help the time pass quicker. I had forgotten my headphones and there was a few people around so the noise was also starting to get to me and I actually did something I very rarely do. I actually was rocking while standing up, this is something I only ever do when I’m extremely agitated.
I had also started coming down with a throat infection so my jaw was hurting, I had toothache and my throat was really sore and I knew this appointment was going to be a long one so I was becoming worried that I wasn’t going to be able to give the answers I needed to and get my meaning of things across.
And then my name was called…
A couple of months ago I made the decision to quit my job for the sake of my health. Due to the fear of not knowing what would happen in the next few months it was a very hard decision to make but, in hindsight, it was the right move for me.
There were a few factors that went into me making the decision that I did but had I been employed somewhere more understanding things might have been different. The job that I had was the same as when I first scored in the spectrum so it has been my only experience of what it is like to be employed by managers who have knowledge of what’s happening in my life. The first manager appeared to have no understanding of what it meant to be on the spectrum and just carried on as normal, which I was happy with as working there wasn’t exactly hard and I had a lot of shifts in charge so I could get on with my work, but he also was a little ignorant in the matter. When I told him I had been put on the waiting list for assessment his response was ‘everyone is a little bit autistic’, I would be here for hours ranting about how much I hate phrases like that so I’ll leave that for another post.
My second manager was a whole different ballgame. Due to moving location I transferred with my job as well and I made the manager aware of my situation before I was even offered the transfer so that there would be complete transparency about it. She was completely understanding and told me about someone close to her also being on the spectrum and this gave me hope of working with someone who might understand more the way that I work and my thought processes. I could not have been more wrong. I was constantly suffering with sensory overload by being given 15+ hours on top of my contracted 30 every week. I was belittled in front of other staff in the staff room, told I was rude and insensitive and was told that I irritated her. I was made to feel completely worthless, paranoid and on edge all the time and I got to a breaking point were I couldn’t face going back into work, I couldn’t face another shift not knowing what I was going to be yelled at for next. I do admit that I feel a little like I took a cowards way out by going to the drs, getting medication and going on sick from work but, at this point, I had no confidence or fight left in me. I spent my time looking into if it was viable for me to never have to go back and I, luckily, discovered it was and so I handed in my resignation letter and never went back. I can’t describe how brilliant the feeling was walking out of there knowing I would never have to be subjected to treatment like that again.
But then the worries of the future set in. I’m not someone who can just sit around all day, I need to be doing something. Temporarily I can manage as I have my house still to sort, a load of ideas for writing to do and other little jobs. In the long run I want to get back into work but worry about ending up in another workplace we’re there is no understanding about autism and how it affects people day-to-day, I worry about the rigidity if having shifts again and having to go into work mid-meltdown and I worry about going downhill again due to the constant sensory overload I tend to get when in a workplace.
For the moment I’m trying to concentrate on the here and now, I have my assessment coming up that I hope will finally lead to an official diagnosis, which in turn will lead to support with my everyday living.
It would be interesting to know if anyone else has had workplace problems due to their autism or the opposite, has anyone found employment somewhere that is understanding and helpful?
Firstly, I apologise if this blog doesn’t come across as articulate as I would like it too. I’m in a bit of a foggy phase, were I don’t have much energy and my brain feels like it’s been swapped with cotton wool, so I hope my point comes across.
I often wonder that if there was a cure for Autism would I take it? Would others take it? Should we completely wipe out Autism if it was possible?
I swing between yes and no for if I would cure myself if I had a choice. Being autistic impacts my life negatively in a lot of ways. I can never work full time and I’ll never be able to work in a job I love because I get too overloaded and exhausted easily, I only have a few friends who I don’t spend much time with and I don’t get chance to a lot of what I would love too because I hate social situations and I get quite anxious when going to new places. There are other examples but you get the idea. So a big part of me would like to think I would cure myself if I could.
But, on the other hand, a big part of me would say no because when I’m in a good place mentally my life can be awesome because of being autistic, it makes me very creative and fun as well as spontaneous. I feel very deeply so when I love someone, I really love and care for them and enjoy that feeling as well being autistic making me very loyal. Being autistic is a big part of my identity, because everything move I make feels weaved untie being autistic I have no idea who I would be without it and that is quite a scary thought.
I can easily understand how some people would jump at the chance of a cure, especially anyone who feels like they can’t live a full or fulfilled life while being autistic. I can understand, as well, why some parents would want the cure for their child who is extremely violent or who can’t live at home full time because their autism is so severe.
I don’t think completely wiping out Autism is necessarily a ‘good’ thing, there are many people out there who live in perfect harmony with their autism and it is what has driven them to achieve great things in their lives, but a choice might be a good thing.
This post was inspired by a video @TheAspyWorld posted on Twitter were he reviewed a few items bought from Wish so I started doing some digging myself into products.
So I started looking at what type of Autism products are out there and there is a lot, which is great….if you’re not an adult female with autism.
Typing ‘autism’ on Wish was probably one of the worst for me as there was quite a lot of the same things repeated and I get bored of trawling through things quite quickly. Half of the items on there was clothing and jewellery, mainly aimed at relatives of people with autism, and the rest was mainly items aimed at children, such as chewable items. The clothing and jewellery, personally, is very unappealing, for a condition that brings social anxiety with it the last thing I want is a cap/top with I’m Autistic blazoned all over it. All was not completely lost and there was a few items on there for adults. There’s plenty of fidget spinners, if that’s you’re type of thing, but also ring spinners and calming lights for your room. Overall, I was underwhelmed by the lack of choice on Wish but I wasn’t expecting much for a place selling cheap items.
Ebay wasn’t much better and the items, again, are marketed towards children with autism. On the first page of browsing there wasn’t any clothing or jewellery and more educational items and day planners instead, an improvement on Wish but still only a couple of items I would possibly be interested in and those would be cheaper on Wish as well.
Etsy had a bit more choice on it, among the usual cheap looking clothes and jewellery, including more adult looking mood meters and various medical cards and bracelets. There was quite a few items that made me stop and look in more detail and be intrigued to own.
Amazon has more choice when it comes to the literature side of things so it’s a good place to head to if you want self help books or more understanding and knowledge on the subject. Other products tend to be a lot of the same thing but it does have a few weighted blankets come up quicker on a search than other websites.
All in all I wasn’t very surprised to find not much choice of helpful items for adults with autism. My intention soon is to buy a few things I think will help me and do some honest reviews on the products, with links and I’ll try for some pictures too.
I had one of those moments today we’re i felt such sheer panic that I had to do something.
I looked online to see how much I was being paid to find out that I would only be given less than £400 for the month (this doesn’t even cover my rent) and thought that was how much I was going to get every month. There was no way I could survive off that so I got the information together ready to apply for PIP (finally). Luckily, I read the actual details and I will be getting around £650 a month, which would still leave me short on my day-to-day outgoings, especially while it’s winter and being on meters so I’m paying more for gas than usual. I still need to get PIP to just to be able to afford to live each month so I got the information I needed and applied. I was still having a bit of a rush of needing to do something so I also managed to get a load of clothes washed and hung up. This doesn’t seem like a lot but I was having the kind of day were I’m useless after doing too much yesterday.
It seems I should be panicked more often if it means I get things done that I never usually do.
I’m not the best with social media because I tend to forget it’s there but I have joined the world of twitter to see if a)I actually remember to tweet, and, b)to create more contacts in this crazy autistic world of mine. Twitter handle is @adultwithautism, feel free to follow. I’ll try and use it for the small things that need to be mentioned and keep this lovely place for the larger topics that need a bit more fleshing out.
Ive been on Facebook for over ten years now but I’m one of those lurker Facebook people, I tend to scroll through posts, like the odd thing but rarely post anything. I’m not a fan of people who post for attention or food pictures etc so I never seem to post anything as I just feel like it will look like I’m seeking attention.
All in all I’m not a fan of social media but it seems to be a means to an end nowadays, I’m not a complete technophobe and I do have various social apps but they tend to be more on the personal side, such as WhatsApp. I still forget to keep in contact with people though!
What are your thoughts on social media, fan or not so much?