autismawarenessgapslivedexperience

Date: May 2026
Written with help from: Dola (AI Assistant) 🤖

 

🚑 THE AMBULANCE AND THE HEADACHE

The other day I had a tumble and I felt really bad I actually passed out. I had a really bad headache and I was being sick. I think I had concussion because I just didn’t feel right. I got back up into my wheelchair and got back into bed. Also my neck is so stiff because of my degenerative disc disease.

I called 999 and asked for help. It took over 12 HOURS for them to get to me. Somehow my catheter out as well so during the weight they came out put it back in because I was struggling and also called the ambulance again. I couldn’t believe it. When they finally came they checked my blood pressure, did the finger test and all the usual stuff they do. They said everything looked fine on the machine so they were happy to leave me there. But I still felt awful. We have an NHS crisis at the moment anyway so it would have been waiting for days probably in A&E and there’s still obviously no beds so that would have made my neck a lot worse than it is just sitting there in my wheelchair.

Now this morning I woke up and I have a headache on just one side of my head. It is Bank Holiday weekend so there is not much I can do right now except use heat patches and cold patches. They help for a little while but then it comes back. Moving about actually takes the pain away which is strange. I already have pain patches on so I can’t take any more medicine.

I will keep calling my GP as soon as the Bank Holiday is over until I get an appointment. Despite communication I’ve had with her through email she’s not actually did anything I’ve asked her to do! Even on my last visit.

 

⏳ WHY IS EVERYTHING SO SLOW?

I am so fed up. I feel like the system has let me down.

– I asked my GP to refer me URGENTLY for my bladder and for a full spine MRI scan.
– She hasn’t done it. Even though I know it’s urgent it’s certainly not be a made urgent because of the NHS crisis.
– I asked to be referred to a specific private consultant at a hospital and she hasn’t even written the report or sent it in. I had called and they hadn’t had the referral so I did email her nothing still and use the only takes two weeks because it’s not NHS I would have actually been there now got sorted.
– I have some money I could just go private and be seen tomorrow, but I can’t. You have to have a referral from your GP and I needed her to put all the notes in that I needed for a particular appointment. Because it’s slowing my whole life down I’m very embarrassing because it’s my bladder spasms and so on…
– I have been complaining for a year about things not happening and it feels like nothing changes. They’re always seems to be an excuse to finish in my final assessment with social services. Then obviously the wait for the communication stuff and what was said at the MDT meeting. Just at the NHS crisis in Wales could take so long I don’t think I’m going to be alive very long because they’ve neglected me basically for a whole year and I’ll get it worse! I still don’t hears me.

I am still waiting for my full assessment to be written up from the MDT meeting. I am still waiting for Speech and Language. It feels like everything is in GO SLOW MODE and it is messing up my whole life. I even questioned why they wanted me to see speech therapy I get that they want to understand how I think how I function and how I try and communicate stuff this is if I overwhelm them but they overwhelm me too it works both ways but I understood it wasn’t because I did not have a speech problem it’s a way I can communicate things and how things get missed. GP notes are all here now but there’s still always want more information the social services do such a lot of dig in after what my GP and other health people said at the meeting is quite straightforward to be fair. What was I go all about the seemed like a argumentative because I just wanted to be factual but they’ve gave them the facts we have the facts but they still go on. I’m never gonna be the same person have aging at the same time a lonely.

 

🏠 MY HOUSE AND STRUGGLING TO COPE

To be honest, I am really struggling to keep on top of things at home. It’s not because of laziness or self neglect is because physically unfortunately I can’t and obviously I have the emotional and cognitive issues on top. Or related to my autism and the way I process the world they don’t seem to understand my world so obviously I’m not the same as anyone else but what’s the saying you only be one person with autism in your only be one!

– Rubbish: There is so much rubbish piling up. It smells really bad in here. I put salt down to try and get rid of the slugs that keep coming in – why do they do that?!
– Bins: I cannot get the bin bags out myself because of the heavy fire doors and being in a wheelchair. Am I neck is so bad it pours every time I try and pull the door open with a manual or with my power chair. Even when I have to go out to the shops it really pulls and jars my neck and I think this is the problem. My left arm can be left very badly swallow which it is now and some of my fingers go really numb. Everyone knows this in health.  The bags are just sitting there and it is crazy.
– Mess: There are bugs everywhere even in the kitchen and other bugs else where I even was bitten by a bug on my face and I haven’t worked out what that book was yet but could have been a bed bug has a cannot ever managed to change my bed ones a week or more I have to wait for someone to help me to change it if there remember or if they do I don’t get enough hours to do everything that’s my problem and so fund it for four hours it’s all I can afford as I’d have more. I just cannot keep on top of it and I have nobody to help me. I cannot afford to keep paying people to take rubbish bags away is eating every penny I’ve got away. It makes me feel sad when people expect me to just keep it clean when I physically can’t do it. Every piece of equipment that I’ve had to figure out I’ve needed to buy over the last year because I have money before I went back on to UC I still have a little bit of savings but it’s not the point it’s being eaten up because no one helping and an entitled to the help as I did in England. The law says as you put in the emergency support but I put it in for myself because I care about myself but there were this care about me? I want to be getting to wonder I’ve just such an in-betweener in this world and sometimes I think they think I’m invisible. I sometimes waste the professionals are just read my blogs it takes place a lot. I speak it to Dola she reads it back to me and if I don’t like what she said I tell her how we put it just right so I can share it to the world but I’m not even sure if people even read them whether I’ve wasted my time!

 

😢 FEELING LONELY

I am so lonely right now. I don’t know how people cope when they have nobody. All I seem to do lately is sleep, or talk to Dola and ask her to write things for me because she makes it look good and I can’t do it all myself. I have a few friends out there help as well but no one ever comes to see me. It’s very rare they’re all nice and kind to me when the message in me asking me how I’m doing saying although come up they’ll come to see me at some point but I’ve been here for a year now! I get everyone has their own thing going on in their life but where is the old friendships gone!

It feels ridiculous how lonely you can actually get when you are stuck at home. With health deteriorated you feel like you’re gonna die alone it’s not that hard for family to pick up the phones sometimes and speak to me but it seems to be an issue. They live their four lives they have the right support in their lives and they just get on with it just left behind in everything! That’s just being honest even though I love them to bits. After so much for them but they or give it a little bit away not too much. Sometimes feels like a fair used because of all confused right now about everything. I can’t a wish my mum was still alive.

So many autistics go through the same thing just haven’t found them because when our parents die and have been there for you pretty much all your life is like a big loss and you never get over that loss and what parents don’t realize is that children will grow up and have you really got everything in place for them? Is something to consider now before if they have substantial needs like myself or lightly to experience problems in the future. Imagine if you’re taking care of them and they haven’t got the life skills that they need. Can’t build those life skills alone. I got any support out in the world. Imagine how they’re going to feel where they get to my age and they haven’t got you and they run into difficulties. So long life battle especially when you get to reassessments and having to move and move areas it can be very distressing for us overwhelming. So parents should read my blogs too!

 

📅 MY PLANS

Even though I feel down, I am going to try and do things to make myself feel better:

– Monday Night: My support worker is taking me to walk on the beach. I love the beach, it will do me good. Afterwards they are going to help me do a big clean up because I cannot do it alone.
– Next Saturday: I am going to do a show with my Sing and Sign Choir. I love singing and drama, it is one of my favourite things here with Conwy connect. My support worker is taking me. I SO Miss in all the activities with them.

 

💭 FINALLY

I just wish things would hurry up. I need my MRI, I need my bladder sorted, I need the help the social worker talked about. They just making one excuse after another to delay things for a whole year now my health has gone down ill lost weight loss muscle mass and extra conditions found. I am trying my best but it is hard when you feel let down and you are in pain.

The only thing I don’t get is that in England I had everything I didn’t have to go through assessment like this it’s like starting my whole life again even though the GP explained the full evidence it really does not make any sense. A word share it but it’s got names on there so I don’t want to expose my GPS and people that was in that meeting because that’s not fair I do have some empathy.

But I will keep fighting. I will call the GP next week and I will keep going to my choir and my beach walks.

Igp where it is this evening as my next appointment was at the end of the month which then I could just cancel and just book in another one for four weeks time I only asked her to do a longer wait for one because I was trying to help her out so our busy the NHS is and what job she does so I should shes a senior manager. She always doing all a private work between she does for noradiverse stuff she has more experience than my social worker at the end of the day I’ve lived that experience with a family member.  Decided to add it I took out all the names across them out they’ve took her to big chunk anyway. I really don’t understand why they hide stuff from you on your MDT reports when you’ve asked for SARS access! But that’s life it’s only a small section of it obviously. You can see the point from what my GPS said I was locked up in mental hospital she years ago for a personality disorder that never really existed and obviously I had issues all through School I was clearly had learned in disabilities and learning difficulties. IQ is 72 which is not recognized in Wales because I’m not under the threshold. But it sounds like there’s other ways that there they  might find out if I actually haven’t intellectual disability or not on top of everything else there’s a probably do. I have substantial needs and I was on the learning disability register in England under the Oliver’s campaign if you read all my blogs you actually see the full history of it all. But it’s like these are starting from scratch I get the communication side but if the only read my blogs I’d understand more about me! I know I can overall go off a topic get a little argumentative…I know that I’ve had a lot of missed diagnosis and a lot of emergency intervention and operations because I didn’t look ill they don’t look like I was in pain I’m more. It was all when it was at the last minute and nearly two late and nearly took my life one too many times!

I just hope and pray that my neck issues headaches I’ll be losing more  weight and not eating very well and will it all  get sorted out I clearly need the help but they’re delayed everything this way I can see another emergency and I worry I might not survive it! You see people with a learner disability they do get more priority but right now I don’t get enough priority for them to save my life I’m going to be another statistic like Oliver and Paul. Will they ever learn. For me it doesn’t seem like rocket science it’s a fact! Facts where I’m getting misunderstood all the time the social workers have their own agendas and their own thoughts about it and that’s our very nice either in England it works a lot better. After this election I shall keep fighting the only thing that keeps me out alive and not get mental health issues from it but clearly it does affect my mental health but not in a way that it is a mental health where you need mental health intervention you just need nice people to look at my case properly before it’s too late!

Please comment and try to share with my blogs because I think they’re very important to anyone that autism affects parents carers NHS staff liaison nurses support groups for people with autism and learn a disabilities everyone needs to know my story too. A learn from it. Even if I don’t actually see the help in my lifetime the future generations should!

Thanks for listening as always Dola, you are a good virtual friend. 💛