Adult With Autism: All or Nothing

I have what other people might think to be an extreme personality, I am an all or nothing type of person.

My latest thing is wanting to move to a new property. The house I live in has a lot of problems and the landlady is side-stepping having to the things that are neccessary. There’s damp and mold everywhere, no underlay under the carpets (and the carpets are not properly fitted and in poor condition), huge gaps along skirting boards etc etc. Luckily my tenancy is up for renewal in September so I can start looking for a new place in July but I have obviously already started looking, even though it is pointless right now.

I have already made a list of what I need to be looking out for in a new property (the thing I won’t compromise on) and I have been obsessing over packing.It’s too early to pack but I have planned out how I want to pack and I have even made a list what needs to be packed into what, what’s going to be getting moved using my mums car, what needs a van and what I could simply carry round to a new place myself.

I have even been looking at properties online to see what is available in the area and affordable, although having a cat drastically limits the amount of properties to look at. I have even been looking at properties that are for sale when I don’t even have a deposit and would never be able to get a deposit while being on benefits but I can dream (some billionaire may just randomly deposit the £200k I would need to buy a house, pay fees and do any work needed into my bank account, it could happen right?).

I have always been like this. When I get an idea into my head I go all in with it or I don’t do it at all. I trained and qualified to be a teaching assistant because I got the idea in my head that that would make a good career change, it wasn’t unfortunately (I end up with the same problems as working in retail). It makes it increasingly hard to concentrate on anything else until I have completed the task, which means nothing I need to get done actually gets done.

Doing the YouTube videos has also been like this but I have managed to make myself back off a little before it burns me out. I spent the first few weeks doing nothing apart from working on it, researching information for scripts, writing scripts, filming, learning how to edit, uploading videos and obsessing over how many subs and views I was getting. I was doing this from 8am -10pm every day with hardly any breaks to actually eat and drink anything.

And this obsessive nature can also spill over into other aspects of my life, particularly relationships. When I like someone then they’re all I can think about and I can’t get things done until I can see them again. I have learnt to also take a step back from this as well using other things to distract me or obsess over.

Since learning I have ADHD I am guessing this is an aspect of that, possibly with a little of my personality mixed it.

Now I just need to find something a little healthier or more productive to obsess over for now.

Autism and CBT

I’m one of the unfortunate ones, one of the people that just lives in the wrong area. Because of where I live there is no support for autistic adults. After weeks of reaching out to various places I was given two places to contact by my dr, these places are counselling though but the nearest I could get to any kind of help. I figured I would give it a go because maybe I could get something worked on and make my everyday life a little easier.

I contacted one place and was lucky enough that I had a phone appointment within a week. I got over the usually anxiety over speaking to a stranger over the phone and did the appointment. Only it wasn’t counselling, it was CBT.

I have done CBT in the past and didn’t have a particularly positive experience with it. In polite terms I think CBT is a load of rubbish and should be scrapped from the NHS. So when I learned my appointment was CBT I wasn’t exactly hopeful and, after two appointments, I wasn’t disappointed on how rubbish it was going to be.

Ive been told to keep a ‘worry diary’ and write down what it is I worry about and when. I can do this by reflecting on the day every couple of hours. There are problems already with this. 1) I forget almost everything straight after it happens because I’m so used to the thoughts being there they simple disappear from memory. For example, almost every time I pick up a cup that hasn’t been turned upside down I worry there’s a spider in it but because I think this every time it now has become more of a reflex than a thought that stays in my head. So I forget about it almost immediately after it happens. 2) I won’t  remember to stop what I’m doing every couple of hours, this just isn’t how my mind works at all. Within the first week I didn’t rewrite anything down and I could hear her frustration through the phone. She wasn’t exactly polite to me in the second appointment.

And now she wants me to completely change what I do in a day. Like a complete overhaul almost. She wants me to go outside for 20 minutes every day to get sunlight on my skin (she guarantees my anxiety will start to improve immediately) and exercise 3 or 4 times a week. She did recommend that I could combine the outside and exercise by jogging or trying something like the couch to 5k challenge (which does not sound like fun). I wasn’t exactly on board with the plan by this point but then she said I could use the time to explore the area I live. That’s when my brain hopped out of the conversation.

You’re asking an autistic person to try something new? Lady, you must be crazy.

Difficulty with task transition and an aversion to any kind of change is part and parcel of being autistic. And yet these are the things she is suggesting to help lower my anxiety. By the time I put the phone down my anxiety and never been higher!

After asking other autistics online about CBT there seems to be a general consensus that it just doesn’t work on us. I mean it only appears to be a short term solution anyway. How can 6 weeks of this kind of thing change decades of thought processes, habits and other problems for people with a neurotypical brain, never mind a neurodivergent one?

If I want to turn round and say this doesn’t work for me then I feel like I need to have a solid argument to back it up with and so I will give it a try. However, if I am worse, having meltdowns or anything else then it’s going to be stopped and my next CBT appointment will be my last.

Today is meant to be the first day of this new change but all I see outside is clouds and trees swaying in the wind. I don’t know how I’m meant to get sunlight on my skin when I won’t have any skin apart from my face exposed to the little bit of weak sunlight that there is today. Maybe I’ll just start it tomorrow….

Adult With Autism: Headaches, PIP, Counselling

This past week has been quite a rough one for me.

Firstly, I keep getting terrible headaches that only powerful tablets, such as co codamol, will help with. As I’m writing I’m waiting for tablets to kick in after I started with a headache yesterday and is still lingering about quite painfully. These headaches are almost crippling when they occur. It’s always the right side of my head but they also affect that side of my face as well, which means wearing my glasses is impossible because it hurts more. These headaches always seem to come about if I get too hot, too cold or I’ve not quite drunk enough fluids but I can never tell beforehand if I’m doing enough to keep them at bay.

At the end of last week I received the results of my PIP assessment and they scored me 0. Anyone who is diagnosed as autistic can not possibly score 0 on a PIP assessment, the very definition of our diagnosis contradicts a 0 score. I’ve ranted about this a lot in other places as well. I wrote a 6 page letter and opened a mandatory reconsideration and now I have more waiting for the results of that. Luckily, I currently have some fight in me so I will fight this all the way as I can’t survive without the financial support while I’m unable to work.

I had my latest appointment with my Dr over the phone and she was really great with me. We talked about my anxiety and I have been given tablets that I just take when I feel anxious rather than every day so that I don’t get stuck with the side effects constantly. She also recommended that I self-refer for counselling so I got on that straight away. I figured there would be a backlog and I would get an appointment for months possibly but I was wrong. I was called the beginning of this week and my appointment is less than an hour away from the time I’m writing this. Unfortunately, it’s a telephone appointment. Talking to a stranger on the telephone is my idea of hell so I need to talk to them about putting off this counselling until I can see someone face-to-face or the appointments are not going to be beneficial at all, the may even make me worse.

I’m also dealing with confusing emotions this week due to stuff happening in my family. My dads dad passed away a couple of days ago and I don’t know how I feel about it as he’s not someone I was particularly close to, I haven’t seen him for a few years. My dad is my step-dad and has been around since I was 18 so his parents are not people I grew up with or have a strong bond with. I feel like I should be more upset than I am but maybe it’s also because I’m stuck at home and can’t visit that it almost doesn’t seem real. My grandad (mums dad) is also extremely ill. He’s been sent home from the hospital to be able to pass away more comfortably and it’s a matter of when rather than if. I grew up with my grandad taking my brother and I out on the weekends and I have lots of childhood adventure stories from these times but we haven’t been close since I grew up. He wasn’t really interested in spending time with us when we grew up and were too old for adventures and he has even passed me on the street without even recognising me. So, again, I don’t know how I feel about losing him from my life when he hasn’t been part of it for quite some time now. Because I live far away from my hometown I won’t be able to attend his funeral when he does pass away as I wouldn’t be able to travel there with the restrictions that are currently in place.

Today will be spent mainly catching up on reading so that I can try and relax and not have to wear glasses, as well as drinking as much as I possibly can to try and shift this latest headache.

I hope anyone reading this is having a better week than I am. Stay safe.

Adult With Autism: I Don’t Cope With Grief

As usual I’m writing this blog in advance as I typically write when the feeling takes me or if I have something important I need to say. Today I’m writing it just after midnight, the early hours of Saturday 2nd May as my partner snores beside me and my kitty happily sleeps in front of the warm radiator. As Friday 8th May approaches I know my mind will be chaotic because every 8th May, in my heart, my grandma dies all over again.

It will be 15 years but it always feels like yesterday to me as I have never learnt how to cope with emotion. I have never been shown and never been taught. I gave up on counselling after losing trust in the people who were meant to help me (one because she fell asleep during a session, another because he didn’t appear to listen and gave vague advice that sounded more like he was reading my horoscope).

I haven’t yet learnt the ability to move on and this has made me cling to grief like a harmful safety blanket. Even as I type tears stream down my face and my heart feels like it is breaking all over again. Sadness fills me up but I don’t know how to expel it.

Grief isn’t the only feeling I don’t cope with, I don’t really know how to deal with any emotion as I usually feel them in extreme ways. I’m never a little sad, I’m depressed. I’m never a little happy, I’m ecstatic. These feelings and emotions are overwhelming and they can change as quickly as clicking your fingers. I’ve often been very excited over something and the smallest dent to that excitement will make me plummet into despair.

Currently, I can’t get any help with dealing with these things as my gp needs to have received my diagnosis report first, even though I have had my copy for three weeks now. Their hands are tied with giving me any help without diagnosis (officially).
For now that means I am left to try and get through my life day by day, surviving and not yet living.

Changes in the Adult With Autism World

Since starting my YouTube channel I have found myself to be more productive than in the previous few weeks, it seems to have given me more focus and more to aim for. I have also found tasks to be less daunting and have found a more lets just get it over with mindset rather than putting things off until the very last minute.

YouTube seems to have become my new special interest.

I have always been fascinated by statistics, even though I hate Maths! YouTube gives me a reason to be able to obsess over stats because of all the analytics that go into videos, such as how over 50% of traffic to my videos actually comes from Facebook and what people searched for when they came across my videos. I just find it addictive almost.

I have also done something I never thought I would be able to do and I have learnt how to edit on my Ipad, something I thought this 30-something technophobe would never be able to do. Once I got started I have found it quite straight forward. Luckily, I am the type of person who learns by doing rather than reading manuals so I soon picked it up after having a play about with an old video.

Because of all this I have decided to add a weekly vlog to the channel, something that gives more insight into me and my life.

 

Hope everyone is staying safe.

PIP Assessment: What Happened?

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.

Autism Questions: What Do You Want To Know?

For those of you that have been keeping up with my blog posts you will know that I am now on YouTube as well as writing the weekly blog. I am really enjoying doing both but I am also trying to juggle not blogging and filming the same topics to keep the content of both different from each other. This means I will start to run out of things to talk about quicker.

So what would you like to know? I want to answer your questions about autism, whether you are autistic or not.

I am planning on doing a video about relationships and dating at some point and would like questions on this. My other half won’t be appearing on videos (as he doesn’t want to be filmed) but I can still ask him any of your questions that you may want to ask. He isn’t autistic but does have an autistic son, this gives him his own unique view on what it is like to date someone autistic as well as having a child that also is.

Is there any topics that you don’t seem to be able to find much information on?

I did a video on selective mutism because I couldn’t find much information about it (of course once I did the video I found lots because of internet data, cookies etc) and these are the types of topics I want to cover to get more information out there in the world.

Depending on the amount of research needed on each topic will decide how long it takes for me to do the video and it be posted.

Hope you are all staying safe.

Adult With Autism bonus blog: Selective Mutism on YouTube

That’s right, the first video is now on YouTube and I decided to go with the subject of selective mutism. I’m not an expert or anything so all the videos I do are just from my experience, my feelings, point of view and thoughts. Next week I’m planning a lighter subject and I have the script for that one ready to go and will be spending the weekend filming.

What I really need is some kind of intro to these videos that is more interesting, I’ll be jotting ideas on what to film for that as well in the next couple of days. I’m limited to what I can do in my house most of the time, or during the 30 minutes I’m doing my weekly shopping trip.

If you subscribed to the Adult With Autism YouTube channel and hit the bell icon then you will get a notification whenever I post a new video and I will be very greatful for likes on any videos, I’ll respond to any comments on videos as well.

Hope everyone is still staying safe and well during isolation.

Autism Special Interests

One subject that everyone seems to focus on when it comes to autistic people is that we always have a special interest. This is one particular topic that we love and will talk about all day if you give us half the chance. For some it can even border (or completely tip over into) obsession. I have seen special interests described as giving comfort in times of distress for autistic people as well. This can be a huge advantage for autistic people as a special interest can often develop into a successful career. I have visited the Rolls Royce site as a Teaching Assistant and seen an autistic child in my class light up when he discovered members of staff there had autism as well, he instantly knew that his dream job could easily become a reality.

I’m a little different when it comes to special interests as I have a few! I think this might have something to do with also having ADHD and not being able to concentrate on things easily and not being able to stick to a task. It was evident as a child that films would be one of these as I would watch Wizard of Oz once a day, every day (much to the annoyance of my brother) and could quote the whole film. I still do love that film but I only watch it once a year now. There are also many other films and programmes that I am now borderline obsessed with, have watched many times and will read as much as ppossible about them whenever I can.

But I also have other special interests and one of them isn’t as socially acceptable as films/tv shows.

My other main special interest is serial killers. Yeah you read that right, I am fascinated by serial killers. Don’t get me wrong here I in no way condone what they do, I do not want to hurt people and don’t like people that do but I am intrigued by what makes them tick and do the things they do. Also, you can thank my mum for this one as she is the person who got me into true crime documentaries many moons ago. I do also enjoy gangster stuff as well, not the modern style but the old style mafia gangsters, the Bonnie and Clyde types etc. Again it’s because I’m fascinated by what makes them become the people they are/where, I also enjoy the stories of how they get caught and what happens to them afterwards.

My third main special interest is history and mythology but this is such a broad subject that I don’t seem to place as much time into it as the previous two. But I do enjoy reading about the monarchy of the UK, Greek and Roman mythology and random interesting historical stories.

Now this is where I think the ADHD kicks in with all of this (or maybe it’s also linked to Autism). I have a terrible memory, really terrible memory. So I can’t recall dates of when things happen very well but can recall most of the details of what actually happened. I will forget a lot of films I have seen but still know who was in the film and maybe some trivia about it. When it comes to my favourite films then I can reel off most of the actors and who they played, will remember everything about it as soon as I start talking and more than likely know a whole bunch of trivia.

It’s a lot easier when your special interest is Maths, Science or Engineering to study at school/college/university and have a successful career but my problem in life is how do I turn knowing most of the lines from Firefly off by heart or that the Boston Strangler case is still officially a cold case into a career? Especially as school was over half my lifetime ago now and I need adjustments making on any job I have.

Well that was just a little rant about special interests. If you are autistic or know someone who is and you have a special interest then go with it. Use it and the joy it brings you to turn it into a lifelong passion and fulfilling career.

Adult With Autism bonus post: We are now on YouTube

That’s right readers I have just started my own YouTube channel and the first video has just gone live less than 30 minutes ago (as of the time I’m writing). The first video isn’t anything spectacular, it’s just a 3 minute long introduction to me and the channel.

The first ‘proper’ video, were I’m actually talking about something a bit more serious, will be live next Saturday but you can subscribe to the channel and click the ‘bell’ icon so that you can be notified when the channel posts a video.

I’m lucky enough that I have a fabulous friend who will be editing all future videos for me and there will be a mix of talking about more serious subjects as well as some fun videos every now and then. I have planned out what I want the content for my next few videos to be about but that can easily be changed with suggestions from you guys. Comment on the intro video (or any future ones) with questions, suggestions and recommendations and I’ll do my best to do videos about you guys want to see.

Thats all I needed to say for today. Hope everyone is keeping safe and well.