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2008 August » Blogging AS an Aspie
Matt has Asperger’s Syndrome (AS), an Autism Spectrum Disorder (ASD) and is writing this blog so that people can gain more of an insight into how people with the condition process thoughts, feel emotions, react to situations and generally handle life.

29 Aug 08 The reflection

I have a lot of regrets about “Stop”. Thinking back over the night, which at times it is hard not to, brings a tear to my eye. But I don’t know why it does so, because there are so many ups and downs to do with that one night.

I’m sure it was on my way down to the post with the team that one of the cute red bull girls told me she had lost my number and wanted it again. I think it was at that point I first noticed Steph. Against my personality, regret number one was giving my number to the red bull girl. The reason for this is that I was partially thinking about her for the next 5 minutes, and how I was going to get my number to her. I recall telling the red bull girl that I had to go, but I would give her it later – little knowing I wouldn’t see her again.

I then approached Steph (though at this point, I was unaware of her name), and asked if we could help her. She told us that this was normal for her and that after taking her medication she would be alright. I relayed this to Becca, who told me to do the refusal form. Regret number two was not trying to persuade her at this point to go to the treatment area where it would be quieter. I also regret not sitting down next to her, simply staying put and making sure she was actually ok.

When filling in the refusal form, Steph was unco-operative, and it took quite a deal of persistence to get her to sign the form. My fourth regret is actually being so persistent, as I don’t think it helped her condition. Contrarily, my fifth regret is in not using that opportunity to attempt again to persuade her into letting us treat her.

My sixth regret may well class as unavoidable – letting her out of my direct line of sight. In my defence, we were called to two shouts one after the other outside of the control building. But all the same, looking back, I’d been happier if I knew somebody had been keeping an eye, just to be sure Steph was getting better.

The next regret is in the way I approached the incident when the police called us directly over to it. I think because of the routine I’d been getting myself into all night, I went straight for the paperwork. It took Ryan to shout at me “100% o2 now, non re-breath!” to get me to even think about putting the resus bag down and getting the cylinder ready. After the incident passed, he did apologise to me, but I told him that he needn’t have apologised, it was an incident, and I wasn’t giving it my full attention.

The eighth regret comes in the way I spoke to her friends in getting Steph’s details – I was rather forceful, and quite demanding. I think I was also impolite. In my mind, I was doing this to ensure that I didn’t get met with the refusal from above. But I think, with hindsight, I could have been a damn sight more polite that I was.

I wish I hadn’t been so sharp with the police. They were doing a fantastic job, and were a brilliant help. In fact, they probably could have got a message to medical control faster than me. Even if they did ask for the ambulances, the location would have been enough for Steve to look out of the window and realise what was needed. I never had the opportunity to apologise to the officers, my tenth regret in not seeking them out to do so.

Kneeling next to Steph, and effectively forgetting her friends looking on is also regretted; I was the only medic available who could have provided some much needed reassurance. Because they were so thankful for our help, I didn’t even think to apologise for not keeping them up-to-speed with what the crew was doing.

I regret not asking somebody to site with Becca, and effectively leaving her along crying. I didn’t know why she was crying, but I should have been thinking ‘she needs to talk to somebody’. Why didn’t I?

Regret 13 is the way I spoke to Emily. I was way too harsh, and thinking solely of my team-mate. I should have stopped and looked at it from her angle, if I did, I would have been able to offer a suggestion. Instead it took my boss to appease the situation and suggest a new plan to keep the cover levels up.

Regret 14 is my thoughts as I sat down – ‘I need a red bull, why didn’t I stash one?’ The 15th regret is that my mind jumped immediately to the cute red bull girl, and the fact that she didn’t have my number. Why did I think about that? Also, I think because I thought of her immediately after the incident, I couldn’t help but notice that she wasn’t around for the rest of the time I was at the event.

29 Aug 08 Stop

All names changed to protect patient confidentiality and to anonymise the incident. Posted to this blog to help others understand what went through my mind.

“Come on Steph, not far now.” “Steph, stay with me girl, please, you’ll be ok soon enough.” “Steph, are you with me?” “Steph?” “STOP!” All eyes turned to me as the carry chair was brought to an abrupt halt; “She’s unconscious!” is all I needed to say to confirm everybody’s initial thoughts.

I dropped the oxygen bottle and bent down to assist, Ryan told the police officers to hold then move the carry chair on command as he and Becca, our nurse, went to grab Steph, whose airway needed protection.

Then everything happened at once, and of the medics, I was the only one with ‘nothing to do’. Becca had gone to Steph’s head to open her airway and change the masks; Ryan was waiting for her ‘go’ for the compressions. A policewoman was calling an ambulance – “Cancel that call” – last thing I needed was a 999 ambulance turning up without going via our controller first. A policeman was calling for CCTV cover on us – although it would have been easier to get Control to lean out of the window; it was right above us!

A second policeman was about to hit his radio for an ambulance – “Don’t even think about it. I need to run this via medic control.” Looking back, there were many better ways to say what I did to the police, but at the time, my mind was focussed on finding out what we needed for Steph, and getting it back to our controller. I simply didn’t engage the part of my brain that deals with the social niceties and etiquette. The shock of the incident had shut it down, to allow the protocols to take over – rigidly take over.

Hang on, Becca and Ryan had our team radios; how do I get backup? “Ryan, what do you need? Para backup? Stretcher?” “Yes, yes, now!” “Ambulance – no?” “No.” “Becca, want me to ring medic control from my mobile?” I asked because I had set one of my speed dials to be medic control in case of radio failure, and neither Becca nor Ryan had a free hand to work a radio.

I can’t remember the exact call, I blurted something like, “This is Matt with medics 18 and 24 with a patient outside of event control. I need a paramedic backup and a stretcher immediately please.” I was asked to repeat it, because I was talking too fast, and I also remember hearing the controller say “Stand-by, on phone to crew.” I was still kneeling down, and all of the police were providing a human cordon from the crowds to give us working space. I held the paperwork in my hand, knowing I should be writing something, but I think I froze due to the shock of having a patient collapse on me for the first time.

I don’t know how long passed, but it must have been a short time, but Steve turned up. I asked him, “Want me to keep the line to control?” He answered, “This phone? I hung up 2 minutes ago.” I suddenly realised that Steve was our controller for the weekend. I think Steve was watching for the backup crew to arrive. I suddenly remembered that there was a patient in front of me, who was now half-sitting, leaning back on Becca’s knee. She was drifting in-and-out of consciousness, and I put plenty of effort into trying to keep her with us.

“Steph, come on, it’s Matt, stay awake for me, girl.” “Steph, you’re doing really well, keep focussing on your breathing for me.” “Come on, Steph, don’t go to sleep on me, I need you to really try and keep your eyes open.” “Steph, come on, look at me, that’s a good girl.” I basically kept repeating those lines, and kept her looking at my eyes, I would at least then know if she was with us. My entire attention was with Steph, I didn’t even know what Ryan or Becca was doing at this point.

The backup crew arrived, Emily and Tom. I stood up to give them room, and gave as much handover as possible to Emily, aiming to be as concise as I could. As I finished, I noticed Steph’s friends, who I hadn’t spoken to since her collapse, were in tears at what they could see. Although I knew I had been quite harsh with them in getting Steph’s details from them, I think I may have been the only medic available to talk to them. I held my hand out; she instantly grabbed it and looked to me for reassurance. “She’s going to be ok, she’s came round, and we’re just moving her up the road to our base where we can look after her easier.”

As she was loaded onto the stretcher, her friend asked if she could accompany her, “Of course you can, just give me a moment, I’ll stick with you.” I bent down to gather all of the kit that wasn’t with Steph, and went back to her friend, who again grabbed my (now rather full) hand. “Can I hold her hand?” “Yes, you can, but just give us 2 minutes to get her into our treatment area and off the streets.” “Thanks.”

As we arrived back at base, I handed over the paperwork (both sets) and walked round the back. Emily asked if I could get the team back out to post, as the medics were low on cover. “Hang on, we need a good 5.” As I walked into our refs area, I noticed Becca was crying – and it was seeing her that brought my social skills back into play – “Are you ok?” “I’ll be fine, just give me a minute.” “Ok, would you like a cuppa or anything?” “No.” I left her, because I didn’t know her personally, and there was plenty of crew on base that did.

I was also in shock myself. Steph was the first patient I was treating to collapse on me. But, it wasn’t that which was bothering me. I felt a massive amount of guilt, sadness, and uselessness – just 30 minutes before the collapse, we had come across Steph who was having a minor incident, and we offered our help. She refused, and it took me ages to get her to sign our refusal form. I tried hard, but I didn’t get any of her details, medical or otherwise. Her friends were just as unhelpful, and I know I was quite persistent with them. I documented the refusal to give details, and made as many observations as I could, following Becca’s advice, “Write as much as you see, in case she self-presents to base later tonight.”

I wish she had presented to base. I wish I had been more persuasive. I felt really bad, because in the 30 minutes or so we’d been away from her, she was getting worse. We all knew that the reason for the collapse was directly related to what we had predicted when she refused treatment. There is only so much we can do as medics, but that statement is of little consolation. 6 days on, I still feel bad about seeing what Steph went through, and for not trying to do more when she was refusing.

For information, Steph did recover from the reason she collapsed.
Please see the next post – The reflection – for my regrets in my personal dealing with this incident.

17 Aug 08 a friend like henry

I’ve just finished reading a friend like henry by Nuala Gardner, which is about Dale, her son, who has been diagnosed with classical (Kanner) autism. It’s about her fight to achieve the correct diagnosis, to get the support he is entitled to, and about his remarkable journey to a full integration into society. A TV drama, After Thomas, is also based on her story, but that’s a separate post due to my differing views on the film.

I almost cried at a few points in the book, particularly when the dog dies in the final chapter. But it was the afterword that actually had me with tears coming out of my eyes. Two quotes from the penultimate part of the book strike a lot of meaning with respect to my knowledge and experience of autism/Aspergers:

If I had to say just one thing about autism as a disability, it is this: we must never underestimate how hard a person affected has to work every day, all day, to live by our society’s rules and to fit in. The anxiety and effort this takes is always immense, and, like their autism, it is for the rest of their life.

It sounds very similar to the words of my Step-Dad a few years ago, and it truly sums up how I live my life. Each day you may see me as a ‘normal’ student at college, chatting, flirting, swearing, getting on with the work, and having a laugh. To do everything except the work itself, it requires a massive effort, whereas by comparison the academic work is as easy as you’re finding the small talk.

You worry about passing the exams, doing well in the subject, and coming home with your anticipated grade – be that an A or a U. I worry about whether I will mess up and be labelled as a freak, whether I will appear ‘normal’, whether I will end up a total loner with no friends. Yes, you may worry about whether you will ‘fit in’, but to do this may require an hour or so in the morning sorting out your hair and make-up. I have to worry all day every day about how I am seen, what I am saying, how people are reacting, and most importantly, whether I am interpreting any of that correctly!

Through the drama After Thomas and this book, Dale and I hope that at long last some lessons will be learned.

That one simple sentence made me reflect on everything I have been through recently, particularly since starting at this current service provider. My Mum’s fight for my diagnosis and the subsequent fights for adequate provision were all too similar by my recall. I was diagnosed about 7 or 8 years after Dale was, and I can’t say that much has changed. Departments within services are still trying to pass files and the accompanying responsibility around, with nobody quite certain where Aspergers ‘fits’. Multi-Agency teams cannot agree on who should be doing what, and none of them are keeping the important people in the loop.

With my forthcoming transition to the ‘real world’ as it were, I have been thinking on what is out there, how good it is, and is it really worth it? Currently, I describe myself as being “in this cotton-wool padded world, with far too many walls layering me from the real world, it’s going to come all to soon when those walls crumble and I’m the only thing left standing.” My point behind this is that with the current culture in healthcare provision, all too often the actual purpose for providing me with these services gets lost, “in less than a year’s time, it’s likely that I will have to do this anyway.”

To prove that I can cope independently requires being given limited amounts of responsibility, but in this day and age, somebody always has to be responsible for my care, and most of those somebodies are governed by ‘risk management…

17 Aug 08 Sorry!

I know the blog hasn’t been updated in a while, I’ve been quite busy and doing a lot of different things in a lot of different places. Lots of new opportunities have opened up for me where I could never have imagined.

Everything that’s happened will be blogged about, but I’ll alter the timestamps slightly so that it reads in a reasonable order.

Normal service to be resumed now!

12 Aug 08 Remembering what’s important

In the last four weeks, I feel like my life has been turned upside down. I don’t know why it turned upside down, it just did. And what confuses me the most is that I was effectively on holiday when everything happened at once.

I was as far removed from ‘the loop’ as professionals could reasonably keep me. It wasn’t just me; my Mum also was not sure what was going on. In some cases, even my Overseeing Manager at the service provider was not informed of things that affected my care.

I’ll briefly explain a timescale. From 15th July to 25th July I was still at the service provider, although (for all intents and purposes) was on holiday from the college. I returned to my Mum’s house on 25th July, and stayed until the morning of the 27th when I travelled independently to my Gran’s house in Southampton. I returned home on the train on Monday 11th August, and have been at my Mum’s since.

The first I knew something had been going on was when my manager called me into his office on Monday 21st July, and was explaining that “to keep me out of trouble and to protect me” he was suspending all of my community risk assessments until I left the Sunderland area on Friday. But I wasn’t suspicious, his reasons seemed acceptable to me at the time, and I had no reason to suspect that anything else was taking place. I should have noticed later in the week when another manager queried me on an aspect of it, but I dismissed it as a usual lack of communication. It should have been blindingly obvious on the Friday when my manager explained that one of my Psychiatrists wanted to speak to my Mum at home.

As it was, I simply took it as routine, and went about my journey home. I wasn’t expecting the phone call from my Mum on Saturday asking me to be home for 4.30pm because the Psychiatrist needed to “urgently see me at home”. I duly returned, and settled down for the meeting. At this point both my Mum and I discover that “there has been some meetings this week about Matt’s plans for the holidays and potential risks”, not that we get to know the content of them.

And then he said something which made me react aggressively, “[the service provider] has had to make a ‘public interest disclosure’ to [a local] social services child protection team about Matt’s interaction with and behaviours toward [my 15 year old female friend]“. I could not believe what I had heard. Not half because the service provider has no primary evidence of my interaction with my friend. I will admit to getting very aggressive, and in part that was due to a trust breakdown between me and the service provider. At present, I’m not letting on how I feel to them, but I’m there next week, and I intend to confront them with it.

I then went away for two weeks, having been reassured that both my Mum and I would be kept informed of the goings-on as they happened. So how did it happen that my Manager was ringing me at 2.35pm on my train journey home, asking why I hadn’t attended a 1.30pm appointment at my house? Simple, nobody had checked my diary, nobody had copied my Mum or my Manager into the relevant letter, and nobody had rang me to tell me about it. The particular department in question had cheek to “be annoyed that nobody was at home when they called”, considering they hadn’t checked that the relevant people (me!) had been notified!

After a discussion that night, both my Mum and I agreed on something, that it appeared a lot had been going on with regard to my care, but for some unbeknown-to-us reason we were no longer felt to be ‘in the loop’.