My previous post outlined the way things had been dealt with following my diagnosis of ADHD and after much pushing and pushing things have moved on a little although I still do not know what exactly happens and how long it all kind of takes. You will understand this is quite a big thing if you have an understanding of autism.
When I refer to stress and anxiety sometimes it is unclear what I mean, I guess stress and anxiety, like depression, are words that have been devalued to an extent or at very least are not strong enough to describe what I feel. My stress and anxiety are constantly pretty high. Everything I enjoy and want to do causes me stress. I'm anxious everyday but presently it is like I am walking along a narrow path on the edge of a cliff, constantly ready to tip over. I am explosive. It was only last week I had a meltdown because my phone wouldn't charge, it totally came out of nowhere and there was no stopping it. By meltdown I don't just mean an "arrrgggghhhh" moment, I mean break things, throw things, out of control. And as an adult I usually cope with stuff like that fine, it is not something which would usually result in that type of behaviour but my anxiety and stress are so high that it does right now. I am currently living life on the edge with fear and worry that I could lose it at any time and the biggest contributory factor to my life being like this is how the follow up support from my ADHD diagnosis has been handled.
There is a lot to cover here and I'm not covering this just to moan, I will be taking appropriate action, nor am I covering it to show people "how difficult my life is" as I know we all have our own significant challenges, autism, ADHD or not. But it is important that I do this and the reason behind that I will make clear.
I mentioned in my last blog post that I was diagnosed with ADHD on the 7th July. I was given great feedback and explanation on why a diagnosis had been made and was applicable. I was given timescales for follow up sessions to help me understand and manage my condition. I was told certain things would happen. These things did not happen, the timescales have all passed and I am still waiting, totally unsure of what is going on. With services like these I do expect a wait, it is not ideal, at this stage it can't be ideal - I don't expect perfection. But I do expect professionals to do what they say will, when they say they will. That is important to me. I was diagnosed 7th July but will not have any follow up until mid October - 3 months following diagnosis and I have been struggling significantly for a very long time. I have reached points where I feel there is no hope, no point and that things will never change. Where I feel that I just don't matter. I have been incredibly vulnerable and empty, just taking up space from one day to the next. Feeling useless. And that is a horrible feeling.
It is frustrating waiting so long. It is not good enough to be given a diagnosis and then left for 3 months - those days, weeks and months following such a diagnosis are a very confusing and difficult time where a range of emotions are felt. Or at least it has been for me. But it is not that wait that has been the biggest issue for me, I can cope with waiting when I know how long there is to wait. At this stage now waiting until October is going to be difficult because I have become so fixated on this appointment due to the anxiety that has come about expecting it to be sooner and not knowing when it would be. The biggest issue has been this - when I was diagnosed and the possibility of medication was suggested my concern was, as it is with practically all medications, how would it affect my fighting and sport? Would it have an impact and I do not want to take a risk and start new medications before big competitions, they are too important to me, I have sponsors and if I am not able to give my best and enjoy my training and competitions it significantly affects my well being.
My training and competing to me have always been necessary in managing my frustration and have always been more useful to me than medication. When I was diagnosed it was made clear to the psychologist that I would be training for the world championships from September, to compete in November with a small gap before training for the next international competition started in January. We asked specifically if referral could be made straight away so the stress of waiting for the appointment would be lessened and it would be clear what happens before I start training and needing to focus. We were assured this could happen and would happen, that it would be the next couple of weeks following the diagnosis. But this has turned into months. The anxiety of expecting and waiting for a letter everyday that would give you an appointment to discuss medication that it has taken you a lot to agree to be open to has been immeasurable. I can't cope with the simple stuff anymore, I struggle to attend my training sessions alone and I have missed a few training sessions due to meltdowns and severe anxiety. I have not slept before 4am in over a week and I am supposed to be training for and focusing on winning a world title. I will be fighting for a world title a couple of weeks after this appointment for medication that I am incredibly stressed and anxious about happens and after making it very clear I did not want to be in that situation it is making me feel so angry that it is exactly the situation I now have to cope with.
But that's not all. My stress and anxiety got so bad that I went to see my GP, where I found out that my GP (as of 28th August) had no knowledge of my ADHD diagnosis. I don't think they were even aware I had been referred for diagnosis. They were also not aware of significant situations which had occurred recently due to my anxiety and level of stress. At a time when I have been at my most vulnerable, my GP has been completely in the dark and I have been unsupported. How does this happen? My GP was just as shocked and appalled by this as I was and has since spent time chasing up and trying to find out from all the involved services just what is going on. But most importantly because my GP was unaware of what was going on they could not help me.
What more could there be? It almost seems how much can a person be let down and failed? Just a few weeks before the psychologist I see for support with Aspergers was due to leave, they decide it actually might be a good idea to tell me! And right up until our final appointment (8th Sept) it still wasn't clear what would happen after she left. There is still so much work to be done and I feel as though realistically nothing has improved since we started working together. No options on what could happen next were presented, how can I make a decision if I don't know what is on offer?
The whole service has left me feeling completely baffled. These are the people who are supposed to understand autism and be able to support me but they have made me feel alone, added to my stress and anxiety and essentially made life worse. There is still so much uncertainty around what happens next with the work I was doing with the psychologist and following the ADHD diagnosis. I have very nearly given up and all I want is something very simple, just to live my life as fully as possible. I want the basics. I want to cope with day to day life better.
My experiences with services concern me. I have had awful experiences with mental health services, employment services and I also now have bad experiences with services which specialise in autism and ADHD. Am I that difficult to help or that complex? I'm not sure that I am. These experiences feel awful to me, they have made me think and feel things that no service should make a person feel. And I know I am not the only one. This is why I must share these experiences. I have got to where I am through sheer grit and determination, I have dragged myself through things that many wouldn't and I have achieved amazing things. I am lucky I could do that, for whatever reason I have managed to do it the one reason that is missing is because I was supported adequately by services. I was diagnosed with Aspergers in 2010 and to this date have had no official support with strategies for managing and minimising the associated challenges. I have had to create my own.
Through social media it is easier now to see more of what others go through and I see a lot everyday of people going through things similar to myself. I have friends of all ages who experience this stuff too - so just what is going on? It tears me up and breaks me to see what my friends go through. To see them unsupported like me, to see them struggle and suffer like me, to see the impact it has on them. The lack of understanding, the lack of support, the insufficient and inadequate service provision is just not good enough - it must change. There must be more passion to help those like myself, these services aren't even getting the basics right - they aren't getting the structure, environments or the communication right, they aren't defining processes, or making it easier for us to process information. The way they run their services seems to just make it harder for them to provide a better service.
The way things are is damaging. For people of my age it is bad, it is frustrating and difficult to change. But for children and younger people it is damaging - they have a chance that is being reduced and removed by those that are supposed to support them. In some of my blogs I have spoken about how I underachieved at school and didn't reach my potential because I was undiagnosed and unsupported. But now I see that there are those with a diagnosis that are unsupported, given up on and who through having a diagnosis are made to feel even more different and through the negative experiences they have naturally conclude that means they are not good enough. I see so many negative attitudes about helping those less fortunate than ourselves unless it involves tipping a bucket of ice over your head and donating a few quid to a big charity that pays their CEOs an obscene salary. I have a disability, I have dual diagnosis, I am physically able and my challenges are not obvious but I struggle significantly in my day to day living everyday - I don't have the money to donate a few quid to big charities but I give my time to others as much as I can around my commitments.
I try to bridge the gap in understanding between those who have autism and those who do not as much as is possible from my own experiences. I try to support my friends going through their own difficult experiences caused by autism. I try to help younger people with autism and without autism see the good in themselves, to inspire confidence in them and to provide any support I can to make their life better, so they do not feel alone. I might have my struggles but I do as much as I can to help knowing it will never be enough. As a society we must stop tearing other people down and start building them up, start inspiring confidence in others and understanding difference - we are all different. Services should be there to build us up not bring us down.
Now I have written this post tearing into services but it is needed because attitudes within services need to change. However as much as I am doing that here my many suggestions for improvement will be made in an appropriate way but for those suggestions to be taken on board, the failures and the impact of those failures must too be highlighted.
