Accepting I’m different

Throughout my life, I’ve struggled to fit in. things people find easy, I dont and came up with numerous ways to fit it or ways to accomplish things. Despite this I’ve always been told I’m doing things wrong or someone would say “I wouldn’t have done it that way.” Nothing i have done has been good enough and honestly throughout my life I’ve felt a failure.

However since my autism diagnosis, my life and outlook on things has changed dramatically. Its difficult for me to accept that I’m different and that I am in fact disabled. Everything i have been through in my life and the way i react to things or the way i think, is different to everyone else. Thats a hard thing to get my head around. It wasn’t until my diagnosis that certain aspects of my life began to click in place. I’ve started to realise some of my reactions and feelings are autistic traits.

Because I’ve tried to fit in to the world around me and to be accepted by people I have learned to mask things. (Masking is a process in which an individual changes or “masks” their natural personality to conform to social pressures, abuse, and/or harassment). My counsellors and Doctor have agreed that masking is wrong and I should stop trying to conform to things and be my true self. This is where things are getting really difficult. I’m trying to be myself and just do things that i enjoy, however for me to do that i’m starting to ‘let go’ / forgetting to do things that would be classed as ‘normal.’ e.g. Energy bills or managing money that i really dont understand it and so am kind of ignoring it and hoping for the best, which i know isn’t the best plan. There are so many things that i still have to try to conform to and things that i have to do. Which goes against being myself and trying to bring down the ‘masks’ I’ve created.

How do i be myself and restart my life as an autistic adult if i cant let go of the image of a ‘normal’ adult i pretended to be. It really is a minefield and that’s before I even get onto my other health and learning Conditions.

Hospital Disaster

Over the past couple of months i have been having numerous hospital appointments and then had an operation. It was to remove 4 teeth (3 wisdom teeth and one other tooth).

It seemed to be one disaster after another. Although the operation was successful it was not without drama, trauma or stress. They really did not seem to have a handle on how to deal with Autism at all and has left me having nightmares about it.

It all really started with a mix up with hospitals. I went to Fairfield Hospital to see the surgeon and have xrays done. I then had a further appointment for MRSA screening as part of the pre-op before the operation, I turned up at Fairfield hospital to be told the actual appointment was at North Manchester hospital. So this test was rearranged and i went to North Manchester Hospital, to have the test done and was given an operation date and letter saying the Operation would be done at Fairfield Hospital. It really didn’t help that all the letters came from Fairfield hospital, including the one for the appointment at North Manchester Hospital. All these appointments happened within weeks. Not very helpful and quite an information overload.

I received 2 letters in the post regarding the day of my Operation. The First one said I had to be at the hospital at 12 noon for an afternoon operation and the second letter arrived on saturday afternoon before my operation on the Tuesday (monday was a bank holiday) to say I had to be there at 7:30am for a morning operation. Due to the Time of arrival and the bank holiday i couldnt contact the booking department to find which time i was meant to be there for, so we took the 2nd letter as the most up to date and went to the hospital for a morning surgery.

I wasn’t allowed anything to eat or drink from 11pm the night before. We arrived at The hospital and checked in at 6:45am. The little waiting room was very hot and stuffy. The receptionist behind the desk was eating her Breakfast and drinking cups of tea in front of patients who were nil by mouth which I thought was quite mean. I was already quite nervous and anxious before arriving at hospital and at around 11am nothing had happened and was still sat in the waiting room. I went up to the receptionist to find out if they had forgotten about me and after she looked into it i was told i was not due to have my operation until later in the afternoon and apologised that no one had told me. During the time we had been there we had seen other people being called in and some already coming back from their operations. At around 11:45am i was on the verge of having a major panic attack as i had been trying to hold it all together since the night before. After discussing it with my partner i decided that i was no longer in a fit state and really didn’t want to have the operation that day, I had reached my limit. I wanted to cancel it and rearrange for another less stressful day. So i went to speak with the nurses and asked to cancel and rearrange, i was asked why and i had explained i had autism i’ve been waiting for almost 5 hours with nothing happening, hadn’t eaten or drunk anything in 12 hours and was starting to have a major panic attack. The nurses really didn’t want me to cancel and tried everything to get me to stay and said they would ask the surgeon if i could go next instead of having to wait until later. I really did feel rail-roaded into having the surgery done.

The surgeon agreed to change his schedule and I was then next in line for surgery. I met with nurse’s, the anaesthetist and the surgeon. I was asked multiple times about my current conditions and medications, which I explained about my autism, PTSD, anxiety and depression. I was then taken down to the operating theatre around 12:40pm.

While I was in theatre my partner was sat waiting in the waiting room, he received a phone call from North Manchester Hospital asking him where he is and could he come into hospital as there was a problem with my surgery. He explained he was sat in the waiting room of the day surgery unit, so they said they’d be down to collect him. Around 10 minutes later he gets a call back as they can’t find him and he explained he was by the reception desk of the day unit at Fairfield hospital. For some reason they were looking for him at North Manchester Hospital. The switchboard was at north Manchester so they had assumed the surgery was being done there.

Once the confusion had been cleared up, A staff nurse came and collected him and took him into the operating theatre where I was and he was horrified to see me being forcibly held down and me “fighting” to escape. There was nurses holding my arms and legs down and others trying to keep the oxygen mask over my face. He explained that i had autism and they needed to stop as they were doing to much at once. He also explained about my medication and my anxiety, depression and what i had been through that morning. They hadn’t been told any of this, despite me confirming it numerous times that day. I remember bits of this as I started to come round during the operation. Apparently I had a bad reaction to the anesthetic due to the medication I was on. So they had to bring me round during the operation in order to give me a different type of anesthetic. My partner was told verbally what anesthetic I had a bad reaction to and was told that in future operations I should not be given it, however this was written down.

The operation which should have only been half an hour turned into a 3 hour one, once done I was taken back to the day unit. Instead of being put onto the ward to recover with the other patients. I was put into my own room in order to come round in my own time. Everything seemed to change at that point, myself and partner were treated with ‘kid gloves’ lots of tea and extra biscuits. Everything done at my pace. They seemed to be falling over themselves to be helpful, it seemed like everyone knew something had gone wrong and were trying to make up for it.

After hours recovering I was discharged and sent home. It was days later, when the swelling had gone down that I could see there was a stitch in one of the wounds and a week later another stitch came out.

No one had told me I had stitches put in (how many, how long they’d last etc), I wasn’t told by any hospital staff what had happened in theatre or what anesthetic I need to avoid (hopefully this will be on medical notes). As I will need to make people aware of this in future. Now feeling left very let down, traumatized and have loss quite a bit of trust in hospital.

Throughout my treatment from my dentist, to the consultant, the pre op appointments and the morning of the surgery. I told everyone I was autistic and had other health issues, but it all seemed to be ignored on the day.

There are however 2 silver linings throughout this ordeal that I can take comfort in. Firstly, the painful and troublesome teeth have been removed and secondly, how my confidence has grown (through the help of life coaching) in order to stand up and say I wanted to cancel and rebook, despite being forced into it, previously I would never have stood up for myself in that way.

So all in all a disastrous hospital trip with NHS staff needing a lot more autism recognition and training. Being overwhelmed with information and dates at different hospitals and lasting nightmares about being held down and ignored however I will seek treatment for it and will give feed back to the hospital as no-one should have to endure what I was subjected to. It would be difficult for a normal person to deal with let alone someone on the autism spectrum.

Autism Diagnosis

Since my nervous breakdown in 2013, I have been visiting the GP, going to counselling and even had a number of unexpected trips to Hospital. They seem to be finding more and more things wrong with me. First it was anxiety, depression and PTSD. Then they discovered I was partially deaf and classed as hard of hearing, requiring me to have 2 hearing aids fitted. During my numerous counselling sessions it was suggested more than once that I might autistic.

Last week I was officially diagnosed as having ASD (Autism Spectrum Disorder). I’m still trying to come to terms with it and what it all means. I am still awaiting the full report from the autism assessor and hopefully this will either answer some of my questions or put me in touch with people who can help answer them.

– Majority of Autistic people suffer from Anxiety and depression. So is how I’ve felt since 2013 part of my Autism Spectrum Disorder or are they in addition to it?

– Most autistic people are diagnosed when they are children, I’m in my mid thirties, apparently dyslexia is a common misdiagnosis of autism. I was diagnosed as dyslexic in 1998, so am I still dyslexic or has this been misdiagnosed?

– I have been reading and chatting to people who have been diagnosed with ASD later in life and they have said that their life changed and really began after their diagnosis. So will mine change and if so how?

– Are my physical disabilities part of ASD?

It is a big change and huge learning curve. For someone like me who isn’t always sure of his feelings to start with it’ll take time to adjust and time for it all to sink in. I’m relieved that they found something and it wasn’t me just going mad, but. at the same time I’m sad, scared and angry. Really is a jumble of all emotions. Apparently grief is an expected emotion after this diagnosis, but I’m not quite sure why, no one has died, I’m still the same person I was.

 

listed below are some things that are very familiar to me when I was looking through the autism website. I just thought everyone felt this way, didn’t realise it wasn’t normal.

Sight:
OVER-SENSITIVE
Has difficulty getting to sleep as sensitive to the light.

Sound:
UNDER-SENSITIVE
May only hear sounds in one ear, the other ear having only partial hearing or none at all.

OVER-SENSITIVE
Noise can be magnified and sounds become distorted and muddled.
Inability to cut out sounds – notably background noise, leading to difficulties concentrating.

Taste:
OVER-SENSITIVE
Certain textures cause discomfort

Touch:
UNDER-SENSITIVE
Has a high pain threshold.
Enjoys heavy objects (eg weighted blankets) on top of them.

OVER-SENSITIVE
Touch can be painful and uncomfortable – people may not like to be touched and this can affect their relationships with others.
Dislikes having anything on hands or feet.
Difficulties brushing and washing hair because head is sensitive.
May find many food textures uncomfortable.
Only tolerates certain types of clothing or textures.

Balance:
UNDER-SENSITIVE
A need to rock, swing or spin to get some sensory input.

OVER-SENSITIVE
Difficulties with activities like sport, where we need to control our movements.
Difficulties stopping quickly or during an activity.
Difficulties with activities where the head is not upright or feet are off the grou‏nd.