I don’t know if it is a personality trait that I am just destined to be an obsessive person but it is something I have to work on quite a lot of the time.
Sometimes my obsessions are unhealthy like obsessing over money so I’ll live off 14p noodles and cheap sandwiches to try and scrap every penny together and I’ll constantly check my bank account. For this reason I barely look at my bank account and I rarely splurge on anything.
Luckily some obsessions can be a little more positive, such as a special interest. I have delved back into the true crime world and I have ended up listening to the Murder Squad podcast, which asks people to get involved in the cases they are talking about.
I can see this being a slippery slope for me.
After spending two hours looking at the Doe Network website to try and help identify possible victims of a serial killer I realised I was back in obsessive mode and turned my computer off before two hours turned into an all-nighter. Instead I am trying to stay within my special interest in a healthier way. I used a gift card to buy a couple of books I wanted and I am all caught up on the podcast, meaning that it’s now only part of my life one day a week instead of 10 or more hours a day every day.
It took a long time for me to realise how obsessive I can become over things and it’s a continue struggle to put things to the side and concentrate on other things before it consumes me.
This is just a short and sweet one from me this week as I’m struggling with illness and can’t think straight but I still wanted to get something written so that I stick to schedule.
Im glad that there seems to be light at the end of the tunnel with quarantine. I’m looking forward to being able to visit family after not seeing them for nearly 6 months.
I’m writing this post on Monday 20th and I have just had my PIP assessment done over the phone.
Well there’s the first problem in this story. Giving someone with ASD, ADHD and anxiety an assessment over the phone. Talking to someone I don’t know over the phone sent my anxiety into overdrive. I also, and this may seem strange, prefer to do appointments face to face rather than over the phone as I find it impossible to concentrate when talking over the phone as there are too many distractions around me. My cat decided to take this time to run around the house and cause trouble, I have already found two items he decided were in the wrong place and flung across the room.
The second problem was that she was typing my answers, which is not only distracting but causes me discomfort. I quite often do my own writing on my ipad or by hand instead of on the computer because of the noise of the keyboard. This is the second time I have had an appointment were ASD has been cited and the assessor hasn’t thought to help alleviate causing sensory issues, even after I have given an answer elaborating on my audio sensory issues. I know some people would think why I didn’t say anything but I think that if I do then I will sound rude and I would rather put up with it than come across rude. This is a behaviour I am trying to break out of but 30+ years of learned behaviour is hard to change.
I was simply asked a bunch of questions, which were mainly the same questions I already answered on a form sent to me. I was a bit perplexed that I wasn’t asked anything to do with the motability side of things to do with PIP. This is questions about making journeys. I wasn’t asked if I am able to make journeys, plan journeys, go somewhere new etc. so I am not hopeful about the outcome of qualifying for this side of PIP.
The whole phone call didn’t fill me with confidence and I am expecting a bit of a fight on my hands. I don’t feel like a lot of the right kinds of questions were asked. All of the questions are more in the sense of can you do this? and not how does this affect you? or what are the repercussions of doing this activity?, which I feel are the questions that should be asked when it comes to anything to do with developmental disorders, mental health etc. I have talked about before that there is a lot of things that I am perceived to be able to do but no one sees the before and after of these activities. Yes I can do my own shopping once a week but I need headphones and sunglasses to even get out the door then I am unable to do anything else for the rest of the day because I need to ‘recover’ from large tasks.
PIP assessments are notorious for turning people down and not giving them the help needed and I know people who are having to fight for this help. I am expecting a fight on my hands. The only positive I can take from the call is that the assessor did at least have some knowledge on ASD as she knew what I was talking about when I mentioned stims so this is something that may go in my favour. We shall see.
All I can do now is sit and wait for the outcome and see where I go from there.
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…