In a couple of earlier blog posts I mentioned that life is still pretty difficult at the moment, and cited one of the reasons for that difficulty, namely that I am still very exhausted and in a state of autistic burnout. I’m also, obviously, still reeling from the discovery and the change in identity resulting from it (I think I’ve mentioned that autistic brains are not great with change, so a big one like this is taking some getting used to).
I’m also in a worse state now than I was a month ago, because of what happened at the assessment at the end of November and because the person I saw on that occasion was unable to give me a formal diagnosis, and, in fact, didn’t even complete the assessment. Several people have wondered why getting a formal diagnosis actually matters to me, and why the fact that I didn’t get one on that occasion has affected me in the way that it has and is still using so much of my energy and currently causing me a certain amount of exogenous depression.
I have been considering this question. Why DOES it matter to me to be formally diagnosed, to have an official person say to me “Yes, you are autistic” and to get their departmental administrator to type out a letter to that effect, which will then be folded badly in order to get the address to appear in the window of the envelope, and which will arrive, probably slightly crumpled, a few weeks later? Why do I now care, since I have already taken the step of telling people that I am autistic, have done lots of research, and am already discovering strategies that work to alleviate struggles I’ve had for years? Furthermore, I’ve not, so far, encountered a single person in my own circle of friends who has said to me “I don’t believe you’re autistic – show me your piece of paper to prove it!” so why bother?
It’s a very good question, and one I’ve given a lot of thought to, given how much it is costing us in emotional energy to pursue it and how difficult it seems to be. I’ve come up with a few reasons why getting formally diagnosed is so important to me. I’ll try to explain them as best I can.
The first is a matter of practical convenience. There are straightforward practical reasons why having a formal diagnosis is better than not. The first, and most important, is my mental health treatment. Without a diagnosis of autism I am treated as an “ordinary” mental health customer. In a crisis I will get sent back to CMHT, treated, probably with heavy duty antidepressants and mood stabilizers as before, and I will go round the circuit I’ve already been round many times, over and over again. I seriously believe that treating me for bipolar disorder and anxiety without acknowledging the obviously huge role that being autistic plays in my mental wellbeing or otherwise is basically putting layers of paint onto a wall in which the plaster underneath is crumbling – I’ve spent 20 years doing that. It is only minimally effective, and sooner or later the paint falls off again. The only solution is to replaster the wall.
Furthermore, my current health problems, depression following the disastrous assessment aside, are not primarily mood related. They stem from sensory overload issues, anxiety caused by those issues, and sleep problems, linked to both. If I thought it would be wise to take any sort of medication at the moment, beta blockers or melatonin would do me far more good than quetiapine, but without a diagnosis of autism I’d be unlikely to get them prescribed. For the time being, a bottle of Pinot Grigio every night is having to serve as my medication for both anxiety and sleep – it is the only useful substance I can obtain without the help of the medical profession, so it’s the best I can do for now. I’d really rather prefer not to have to continue with that long-term because it’ll almost certainly damage other parts of me eventually.
In addition, without a formal diagnosis I have no access to any help that might be available. I’ve been around long enough and am realistic enough that I don’t believe there will be much, but there might just be something. When I was diagnosed with bipolar disorder I was allocated a CPN (Community Psychiatric Nurse) who was incredibly helpful. I was also given assistance applying for some benefits – something I could never have done on my own – as the benefits have run out I’ve never reapplied for them because I struggle massively with the forms. Maybe, just maybe, there would be somebody who could help us – my husband is currently working three jobs, out of the house from 7 every morning until 9 or later most nights, then he comes home, cooks our dinner, cares for the animals, and collapses into bed. He also has to leave food for me with specific instructions during the day or I don’t eat (I try, but it is really hard) and he messages me to remind me. Additionally, since I am currently unable to shop, where I would usually drive to a supermarket, he is now walking or getting a bus there with a huge rucksack, making him even later home. He cannot do this for ever. He will break. Any support that could take a bit of the strain off, or even start to allow me to recover enough to contribute again would be amazing.
And just silly things. Our local authority offers a card that autistic people can carry. You need to send your diagnosis letter to get one. I have meltdowns and shutdowns in public from time to time. I was once detained at the swimming pool and only persuaded the staff there to call the doctor not the police because I managed to tell them I was mentally ill. When a child has a meltdown in public they are accused of being naughty and their parents are accused of being bad. When an adult does, especially if out without a carer, then it’s more likely that people would think I was drunk or on drugs and call the police. I have had to get off buses to be sick with anxiety in the past and not been allowed back on because it has been thought I was drunk. An official card would make me feel much more secure.
The Open University are begging me to apply for Disabled Students Allowance. I have not done so, even though getting some support might be the difference between me finishing or not finishing the course I’ve put so much effort into. I’m also supposed to have filled in other forms allowing my husband to act on my behalf. I don’t feel justified in any of this without a diagnosis. I cannot send evidence. There is nothing except my say so.
Maybe, just maybe, I might one day be able to get back to work. It seems such a very long way away at the moment that it hardly features, but if I do, I’ll need adaptions. For those I’ll need evidence. Again, I have none.
I also have to consider my own head, and the way that it works. I like things to be “clear cut”. For me it is important to me that if I say I’m autistic, then I have the proof. I come from a world where kids who wrote their own sick notes at school were punished, a world of work where, when you call in sick, the first thing they do is to ask you to send in the doctor’s note. It is hardwired into my head that I need a piece of paper to prove I am not lying. Without one I feel like a fraud.
Ironically, I am absolutely happy to accept others without a piece of paper, it’s not a need for pieces of paper per se, but an absolute need to prove that I am not lying. Maybe that stems from years of disbelief, from the times when I’ve been accused of being lazy, of being told to pull myself together. I don’t know. But I feel a need to “do it properly”. Although I believe it would be wrong, even a clear “no” from the woman at the first assessment would have been easier to cope with – something to fight against even, but the hanging uncertainty is something I have a real problem with. Uncertainty about something at this level gives me huge amounts of anxiety. Massive.
We encountered this when we were trying to have children. They did lots of tests on us to try to find out why we were failing to have a family, all of which came back saying that everything was “normal” and there was no explanation for our failure to reproduce. The “no explanation” thing was devastating. I wanted them to find something wrong, some reason why it wasn’t happening. Preferably a reason that they could fix, but if not that then a definitive answer so we could mourn our non-existent children fully and move on with our lives. They found nothing. The acceptance process, which will not be fully completed until I’ve finally finished going through the menopause, has so far taken well over a decade. Because there is no concrete answer. No closure.
Similarly, if I never get an autism diagnosis I’m sure I will eventually live as a self-diagnosed autistic, just as I’ve learnt to live as a person who is childless for no apparent reason, but it will take a long long time for me to accept. A formal diagnosis will provide a definite point, confidence, acceptance, and within, maybe, just a few years I can be living the best life I can manage, rather than the uncertainty in my brain continuing to keep me awake at nights and continuing to bother me and irk me for years, possibly decades, to come. At the moment there is a huge “browser tab” open in my head with “autism diagnosis” written on it. Every time I attempt to open up another programme, I get this giant pop up, saying “autism diagnosis tab is still open, do you want to continue”. It eclipses everything else in my life.
I don’t expect people will really understand this unless they’ve had the same feelings. In the same way that, regarding childlessness, I’ve often been on the receiving end of the phrase “children aren’t the be all and end all” (always from people who are parents and became parents easily, I hasten to add). Folk often don’t get it unless they’ve been there. When you can’t have children and you want them then they ARE the be all and end all.
It is very easy to say that something isn’t the be all and end all when you have it and you aren’t in a position where you desperately want it and can’t get it. The fact that my e-mail inbox is overflowing with adverts from dating agencies and that I constantly read stuff from people worrying about boyfriends, girlfriends, and so on, suggests to me that many people are desperately trying to find a partner. I am lucky, I found one. One of the few things that has been rather easy for me is finding partners, including the one to whom I’ve been married for nearly 15 years. I don’t know why this is the case, but I know that having found a partner puts me, as far as the dating thing is concerned, in a huge position of privilege – I would never assume to tell a lonely singleton that having a partner isn’t the be all and end all, because that would be seriously abusing my privilege.
I’d also ask anybody who questioned my desire for a piece of paper another question. Why do people get married? Surely, from a logical point of view, aside from a few legal issues (see medical and practical help above), it really doesn’t matter whether you’re married or not. In fact, many people are happy to remain unmarried, just as many people are happy to remain self-diagnosed. But the number of shops with big white dresses, the number of pictures of smiling couples on facebook, and the number of cars with ribbons that still drive through the streets, suggest that many people DO want to have a piece of paper, a ceremony, something to mark their change in status. I got married some time ago – I knew that when I set up home with the person who became my husband I wanted to make it official. That sort of thing is important to me. Same with a diagnosis.
But, and this probably eclipses all the reasons above, after so many years, what is most important to me is to be BELIEVED. I want some official acknowledgement of who I am, even, paradoxically, from a system for which I have, since the first assessment, lost rather a lot of respect. I have seen items on the news where someone has been wronged, and been through years of court cases to get decisions overturned, obtain compensation, and so on. What comes over every time is that the thing these people focus on at the end of these processes is the apology. They want to hear somebody say sorry to them, and mean it.
I want something similar. I want somebody finally to admit that I have a condition that causes me to find life more difficult than most people find it. I want a bit of paper that, even though it might be crumpled and say some rather vague words about “autism spectrum disorder” or similar, says something else to me. Just a fraction of what it will say to me is: “You are not a liar. You were not naughty at school. You are not lazy. You do struggle with life more than most people. It is not your fault that you lost every single job you ever had. You are not weak and pathetic because you feel sick every time you get back in the car after shopping. You have worked your butt off all your life to achieve what you have done and it has not always been recognized. We have finally solved the mystery of what has made you so ill all these years. It doesn’t make any difference that you can pass exams – your difficulties are real and we recognize them. You have learnt so well and masked your autism for so long that it has severely affected your mental wellbeing – you can now start to heal. It is worth staying alive because now you can build a new life – officially. There is a place in the world for you. You are now allowed to find out who you really are and to be that person.”
That is perhaps the biggest reason of all, and the reason I will return to the hospital that frightens me, the reason I will ask for referral elsewhere if necessary, the reason I will do everything I can to persuade someone to take me seriously. I can say those things to myself, yes, and I have done many times since the summer. But the official acknowledgment would give me, overnight, a level of confidence that it will take years to gain on my own. I want recognition, validation, belief. I want that more than anything, even if there is no other support, no more help. Even if I come home and all I can do is carry on annoying people on the internet with long blog posts, and drinking too much wine.
I want them to see what is now so obvious and to believe me.
Is that really too much to ask?