Help & Support??!

So this blog is a little later than what I had anticipated. I have been integrating a wildly beautiful intimate ND relationship into my life. This along with the self-realisations that I have been having, doing my ADHD coaching for work, having the pleasure and stimulation of a very full and varied social calendar, because structure outside of work is so important too, means I have been fighting burn out for about 3 weeks now because of all the ‘doing’.

So after that little update I shall now get on to the topic for this week as suggested by one of my readers. Once you have had a diagnosis what happens? Nothing. That is actually what happens. Having gone down the route of using the Right to Choose through my GP where a particular provider had been commissioned by my local NHS services I then get a recent text from my local NHS Neurodevelopmental team saying I have finally got to the top of their waiting list for my autism diagnosis. This has been over three years coming. I duly get back to them and advise them that I have not only my autism diagnosis but also a diagnosis of combined type ADHD and that this was done by one of their commissioned partners. The email that I get back from them says that they are unable to help me I am therefore being signed off their waiting list because I have a diagnosis but they are unable to take me on to their caseload because the diagnosis was not done by them but by an external company. Which my point really is the fact that this particular service was commissioned by them due to their issues with the waiting list. However where this now leaves me is I have been Discharged from the local neurodevelopmental team and referred back to my GP’s care. Whilst I have every reverence for the medical knowledge of the GP’s that exist at the practice that I go to, they are not specialists in the field of autism or adhd so I am quite unsure as to how my local neurodevelopmental teams idea of discharging me is actually going to help me?

This it seems is not an unusual story. Some of those that I have known who have been diagnosed early on, especially with autism and the kind of autistic that I am, where we are seen to seemingly tick along and cope with life regardless of the episodes of depression, suicidal ideation, anxiety and all wealth of labels and conditions we may then end up being described as having due to trying to be part of a society that does not understand or accept us for the way that we are, means that when a service such as your local neurodevelopmental team told you essentially to fuck off once you have your diagnosis isn’t really that fucking helpful is it?! Similar to those that I see struggling who have children who have ADHD that are violent to them in their homes, where cause for discussions on medication that may help those children falls on deaf ears within the children’s neurodevelopmental team. And as neurodivergent people we basically end up on the sidelines or at times in the gutter when it comes to actually gaining specialist medical or professional support or interventions – unless of course we get to the point where we are fucking crashing, where for some this is then too late for intervention. Don’t think I don’t understand there is pressure on services – but for what, an out of date industrial society that prefers profit over lives and a screwed up environment?

But the thing is I am one person. I cannot change a system, a broken system or the institutionalised lunging dinosaur that the NHS is. I’m not sure I actually have a point. I just have ideas and I have questions and I have things that run through my head on how unfair it all seems. One of those is what is the purpose of giving people a diagnosis if you then just say good bye to them? What exactly is the purpose of our diagnosis? How does it benefit this materialistic society that we live in for us to have a great big fucking label stuck on us that basically says that we are ‘less than’ those that are part of the cogs in the system and who easily comply without question? And then it is made so hard, so damn hard to integrate us into ‘normality’. We can’t even help ourselves in the form of Personal Independence Payments because the system has made it so inaccessible for those who are Neurodiverse to navigate applying for it, which smacks of discrimination to me! It just pushes us into the funnel of a mundane economic system and society riddled with Anxiety and Depression bleeding out from every pore.

I am angry. I am angry that what I need to do to feed myself and keep myself safe means that I need to work in such a way that is detrimental to my wellbeing. The hardest thing is, is not knowing what actually would be a solution? I know that I was a lot better when I was off work for 5 months even though in that time I was depressed, exacerbated by knowing I needed to get back to work but had no inclination to do so . The guilt I had was immeasurable. I find it fascinating that there are an additional 80 disorders added to the diagnostic manual in 10 years*. How can that be so? How can it be so that having a disorder is defined by capitalist expectations due to work being mentioned in the diagnostic manual over 300 times?* Is it not strange that the only learning disorders are to do with reading, writing and maths and not art or music?* Should what is valued in society actually be looked at again? If we did not have those that gave us art and culture and music where would we be?

So I get back to the point of my blog. Where is the help after you get your diagnosis? Unless you actually go looking for help yourself unless you go hunting for it, it won’t ever be given to you. And if you do go, you must be armed with the right kind of knowledge, because even the experts get it wrong – and when they do there can be dire life circumstances for those on the end of those mistakes – lives fucked up big time, if they carry on living by the way. You always hear about the operations that have gone wrong but who is accountable for those dying from lack of support in the mental health / neurodevelopmental realm. There is no support after you get your diagnosis. Not from the NHS or medical professionals. You need to find it yourself. You need to find it through services provided usually by charities. Is that really a good society? Is that a society that cares about the citizens under its care? No. I don’t think it is. That calls into question the ethics of our society in a big, big way. And there are so many management things to put in place so that you can be a proper person of society, like Access to Work. I get I sound cynical. It’s no wonder really as it ain’t easy to navigate these work and life waters after diagnosis. No sugar coating on this one folks! It’s damn hard and it takes a subscription to spoon supply monthly!

Luckily for me I have never been one to sit back on my laurels and expect anybody to give me the right kind of help. It was helpful that when I had my first break down I got directed to Coventry and Warwickshire MIND a charity set up for the purpose of people’s mental health. It was only thanks to me taking action and getting information from them and the peer support that I found there that I made it out of that first depressive episode that I had. And so my advice to anyone that has had a diagnosis is the best support system that you can find, who not only have the best of intentions, but the most relevant life experience, knowledge and wisdom are those within the peer support groups that you will find around you, a lot through local charities. I do hope to set up a local peer support group myself sometime very soon. What this will look like I am unsure but if it is something that you are interested in within Coventry and Warwickshire area please drop me a note through my contact page. I will probably be looking at the possibility of a Whatsapp Group or the like and would be hoping to do either virtual meetups through Zoom/Teams and then face to face meetups at some point in the future as well. I will continue to add useful links to my page as I find them. Knowledge is Power. Acceptance of Self and finding Kin is support and relief. And it’s about time that got shared far and wide for those under the ND banner that have fallen by the wayside. Because you matter.

And if anyone would like to join in with furthering evolutionary ideas for societal change or just building another one let me know. I’m in!

*Not my research