Monthly Archives: August 2018

Beneath the Mask lies …. who?

In November 2014, when I was forty eight years old, I was diagnosed with autism. Since then I have been trying to write something about being diagnosed so late on in life, but I seem to have a complete block these days when it comes to writing, even though writing is something I have done all my life. My adult autistic son keeps asking me to write something for his blog, and I have tried so many times, but I just seem to blurb out a load of nonsense and not have the energy to edit or try to make it make sense in any way, and so there is never anything for the blog from me.
I have not had time to process what an autism diagnosis means for me – if it is a good or a bad thing – and do I feel better or worse for having this diagnosis? I thought it would it be a good thing, and give some meaning, some explanation for my past, and that I could use it to move forward in my life, armed with the knowledge that I am not broken, or a failure, or that life is wasted on me as I have always thought, but that I am autistic, and that is who I am, what I am, what I have always been, and that I finally know and understand who and what I am. That I could claim autism, being autistic, as my identity.
But nothing could be further from the truth.
In all honesty the one thing that has become clear to me since being diagnosed as autistic is that I have no idea who I am, what I am, or where, or even if I fit in to the world.
Every day it is becoming clearer and clearer to me that I have masked and faked my way through my life, and that no one really knows me, and I don`t even know myself. I feel as though I don`t exist outside of what I do for other people.
This is not to say that I have not had genuine feelings for people, that I didn`t care about them or love them, and the things I have done for them didn`t mean anything to me. That`s not what I am trying to say.
I`ll try to explain, but I am not sure I can.
It`s like from a really young age, probably four or five, I just didn`t know what to do, how to be. It`s like I read the hand-book on how to be a good daughter, sister, friend, partner, Mum, human-being, and I followed it to the letter with no veering from it, no time to think about myself or my own needs. I think I have always been, or tried my damndest to be, exactly what my parents needed me to be, exactly what my siblings needed me to be, exactly what my ex-partner needed me to be, and the perfect Mum. I have always given a hundred percent to every person in my life, every job, every action, with no room for error, no room for mistakes, no room for me.
It is like putting make-up on each day before you can face the world, afraid to let the world see you, who you really are, what you really look like, because you don`t really know who you are, but you know that you can never measure up to other people. And to be honest you don`t know what the fuck you should be doing, or how you should be doing it, so you watch, you observe, you learn, you copy and you do, just to fit in. But you can`t copy and do everything your peers do, at whatever age and period in your life you happen to be, because you can`t get it wrong. Mistakes are not ok. You have to be the perfect daughter. You can never put your own needs, or feelings, or wants above what your parents need from you. And you have to be the perfect sister. You can`t be selfish or think of your own needs, and no matter how overwhelming or exhausting or damaging it is, you have to do what your siblings need you to do. And friends? Well you have to be there for them constantly don`t you? You have to follow their ideas, do what they want to do, put off what is important to you and ignore your own wants and needs and prioritise theirs don`t you? And in a relationship? Well you can`t argue or shout or hurt someone`s feelings. You have to absorb all the shit, but never dish any out. And being a Mum? There`s no room for mistakes, you have to be completely selfless and give everything you have got, and never, ever put your own needs above those of your child. And society at large? Well you always have to be polite, and kind, and caring and put yourself out, even for complete strangers. And when people: family, friends, partners, work colleagues, people in general treat you like dirt, well you just have to take it and never, ever retaliate because the idea or hurting someone`s feelings – even if they hurt yours on a daily basis – is just unbearable. And they are the un-written rules of the metaphorical `hand-book` on how to be a good human-being, except, they are not. They are the rules I imposed on myself because I didn`t know how to be me, how to look after me, as well as being a good daughter, sister etc. I didn`t know how to be a real person, what I was supposed to do, so I subconsciously developed a persona of trying to be the perfect everything to everyone, to make sure everyone else`s needs are met. I still do it. I don`t know how to not do it.
Am I making any sense? I guess what I am trying to say is that because I was so confused and bewildered by life, all my life, I kind of learned how to be the perfect daughter, sister, friend, partner, Mum, employee, student, citizen, always trying to do the right thing by everyone else, that I never really learned anything about who I am? And somehow I have reached the age of 52 feeling as bewildered and confused by life as I did when I was five. And somehow I have blundered through to reach this age without ever really doing anything I have wanted to do (or I`ve had short bursts of trying but never really succeeded with anything) and I have never really known or understood me, who I am, what I want. And I don`t think that anyone else knows me at all, apart from my son. I think my parents knew me pretty well as their testament to how I was as a child went pretty far to me being diagnosed as autistic. I have always been extremely close to my parents, but even with them I had to put on a front a lot of the time when they needed me to help my siblings, and I couldn`t say no. I could never say no to my parents, or `what about me?` I always did exactly what they needed me to do to support my siblings, and I never once complained, or told them how hard it was for me to push myself to do the things they needed me to do.
I know I am not painting a very good picture of myself here, but I just don`t know how else to explain it. I am not the perfect anything, but I have nearly killed myself trying to be.
I keep seeing hashtags about `taking the mask off ` on Twitter, and being your true, authentic, autistic self, but I have many masks, for many different situations, and although I feel they are slowly destroying me, if I take them off what then? How will I go to the shop to ask for something? Make a phone call? Have an electrician or a plumber in the house? Order a taxi? Get my haircut? Interact with my family, neighbours, and society in general? Make sure my son`s needs are met?
Without the masks I can`t function, and if I don`t function I can`t support my son, or even do anything.
I am all for autistic people getting on with being autistic, and not having to go through the stress of trying to fit in to society, not having to `mask`, but if I don`t have my masks then what do I have to present to the world? I can`t present `Me` because I have no idea who that is ….

Jane Donlan

You can find my  sons book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Advertisements

Is this illness or stress?

Autistic people tend to get quite stressed with sensory issues, changes in routine, the need to plan, anxiety build-up, and social communication all playing a part. Stress can and often will have a physical impact: this might be stomach pains, headaches, sickness and more extreme symptoms. I have found this out myself on more that one occasion. Headaches, feeling sick or having pains in my stomach is far from uncommon, and I know by now that they are all signs of an overload. When I was around five or six, before I was home-educated, I would have awful pains in my stomach and feel as if I were going to throw-up knowing that I would have to go to school the next morning. If anyone had seen me they would have thought I was ill, but this was something I felt every night and every morning before school. It was not an illness, it was stress and anxiety brought on by my hatred of school. In more recent years there have been two times when after a big event, for example, a talk or my book launch I have found myself racked with stomach cramps that have led to me being unable to anything, but lie down and wait for them to pass. These have not come on an hour or two after though; the first lot came the night after my book launch, and the second lot came the morning after my talk. I have not had anything like them at any other time, and despite how bad my stomach can get, this was much worse. The first time this came on after my book launch I knew I was going to be sick; it was around eight when I first started feeling the pain, and I was up till after four in the morning, throwing up four times. The next morning I was fine – they were gone as soon as they’d arrived. The second time I was not sick, but again the pain started when I woke up and I could do nothing but ride it out. By the end of the day I was almost back to normal.

It is my belief that these pains and the sickness were brought on by the build-up of anxiety and stress that led up to each event. Add to that the social pressure and sensory impact of the two events, and you can see why the stress and overload might be so great it has a physical impact on my body.

In fact sometimes it can be all too easy to put something down to stress or anxiety or overload. On Monday night I started to feel pain in my side and stomach again, not as bad as the two times talked about before, but the same kind of pain. I had been to two quite stressful and overwhelming appointments in the week leading up to this after months of not doing much at all, so I put it down to that. I had been trying to get back to normal after a long time of not doing anything and I had been doing well, but now my body was telling me not to push it. So when I woke up the next morning and the pain was still there I cancelled the appointment I had for that day, and decided to rest. In fact the pain lasted most of the week. I am free of it today, but it’s been there to greater or lesser degrees since Monday.

On one hand the fact that I was able to see when things were too much, and take a step back with out pushing myself too far is a good thing. In the past I have not always been able to do this, and although I was in pain this time there was no throwing-up, and the pain was not anywhere near as bad as it has been in the past. But it made me think; as soon as I felt that pain and the feeling of sickness that came with it in the first day or two my mind instantly said “stress and overload”. On the third day I thought about the idea that it might be a strain of some kind, but that would not make sense as I felt it in two places, and as I say it also came with a feeling of sickness. But I do wonder how do you tell normal pain and feelings of sickness from pain and sickness brought on by stress? I knew what I had been doing in the week leading up to getting the pain for the first time so I guess it makes sense that my mind would jump to that. But in doing so I run the risk of ignoring a real physical illness that could get worse the longer it’s left. It’s a hard call to make; you do not want to go running of to the doctors every time you have a bit of pain, and it is often good to let things resolve themselves on their own, but even if leaving something will not cause any harm and it does fix itself, I am still left with the question – am I feeling pain as a result of stress, or is there something else wrong?

The pain induced by stress can come in all forms, and sometimes last for days so at what point do I say there might be something else going on? When you add to that my high pain threshold, and the way I tend to get used to feeling a certain way it’s hard to find that point. When I talk about getting used to feelings what I mean is (and this might apply to other autistic people) I mean that I find myself getting used to feeling a certain way very quickly. This has often led to things going unnoticed for a long time in the past. I have talked in blogs before about the infection I got in my foot at one point. When I first began to feel the pain I brought it up, but then within days I was just used to feeling pain in that toe, to wincing every time it touched my bed covers, or I had to put my shoes on. As strange as it might sound I did not think about the pain in-between those moments; I was aware of it and aware that it had not always been that way, but it was weeks or perhaps even a month after first bringing it up that I thought to tell anyone that it was still causing me a lot of pain. Now of course that was nothing to do with stress, and I did not think for one moment at the time that it was. But you can see how it might lead to issues at some point; a pain starts and I put it down to stress, it stays for a few days but stress pains can do that so I leave it, and it would be easy for me to just adapt and not think too much about it from that point. I do know that this might not make any sense at all to some of you, but perhaps some other autistic people might understand what I am talking about.

I have no idea when I start to feel pain if I have hurt myself some how, if there is something else going on, or if it’s due to stress. So I have a day or two of relaxing to try and de-stress and the pain goes away, but who knows, perhaps that is just coincidence? Anyone could feel stress-related pains from time to time, but when you are autistic they happen – at least in my case – quite a lot, and to make things more complicated they do not always feel the same. Sometimes it’s feeling sick, sometimes it’s headaches, and sometimes it’s feeling dizzy or faint, and much more. In the worst case scenario this could lead to me putting something down to stress that is in fact a symptom of something physical. But even if that never happens it is still very irritating to never know the source of any pain that I might feel, to have to make a guess and hope that it is right.

Does anyone else find this hard? Do you know when something is down to stress, and when it’s physical?

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762