part four "Please leave your message after the out of tune tune"

No reply to any of the texts I sent to wish him a good Christmas and a positive New Year, why should there be, he sent me a text a few weeks ago saying that he was hurting, but that he was alright. The silence could mean many things, what I do know is that I know very little about autism and how it affects the person who has it. The world that I believe to be real and textured appears to be entirely different to Jon, He has, over the time that I have drawn closer to him, clearly demonstrated how differently we view the world.
I have just been reading a novel where the lead female character was not believed because her evidence was flimsy and how she determinedly stuck to her knowledge and at the end the “fantasy” she had created was proven to be factual.
For Jon, his world is in his head of autistic thoughts, feelings, beliefs and images. He draws comfort from habits that “non” autistics think are childish, irritating or rude.
I have been in Finland for Christmas, I speak no Finnish and have spent five days with my son, his parents in law, my daughter-in-law and their three children as well as my daughter in laws brother and his family. My son speaks English, my daughter in law a little as well as a smattering from my grandson. Most of the time it has been manageable and I have felt as if I was doing alright, but a few times I realised that I had absolutely no idea what was being said or what was happening around me, or what might be about to happen. Because I had interpreters I was able to ask or sign that I did not understand and was able to be supported through the process and it was accepted that I would not know and I was not stigmatised for being different. But if I had been alone in this alien environment or people had not wanted to help, I would have felt isolated, frustrated, and wanting to replicate familiar habits in order to make sense of my world and wanting to feel comfortable. To some extent I did do that, I took my Earl Grey Tea, as this is what I drink at home.
This is similar to the way that Jon has behaved in trying to make his world safe and non-threatening. He has attempted to copy behaviours from others in order to fit in and appear normal and fallen quickly at the hurdles as this behaviour is copied and not learnt and has no depth. He is merely trying to “fit” in with society. I too have been trying to do that for a week, sitting back, watching, pulling my “Englishness” into check, hoping that this would help me meld into the Finnish environment. But at the heart of me I know it has no substance and that I long to “revert” to the familiar, this is only after five days.
How then does Jon feel when he really wants to rock, to pull covers over him, to drag his hat over his eyes, to write his comforting lists, to watch the light playing between his fingers, to cover his ears because of noise (that one day does not bother him and the next makes him want to scream), that he wants to stay in the same clothes as he likes the feeling of the material against his skin and clean clothes do not feel so good, when he knows he cannot bathe as he is afraid of the water, but does not know why, and the list goes on.
He has sensible, mature, well meaning adults telling him that all he has to do is pull himself together, that he cannot possible be autistic, that all he has to do is eat regularly and properly, bathe regularly, go to the dentist and get on with life and that this would sort him out. And he is so afraid and cannot explain to them, that this is what he cannot do, that he would love to be able to do it, that he dreams of being able to function and “join” in life, but that he cannot, not that he will not, but that he is disabled from these activities because his autism has the power and he does not.
My shock was that this very same person can suddenly, in a moment, be articulate on the computer, write programmes for it, direct me by phone from the north of Scotland and talk me into getting home safely, can energise himself to take me home as he can see that I cannot find the energy to do that, can have deep and lengthy discussions about politics, history, photography, religion and yet is not able to open his mail without support.
When I met him I believed I could conquer his autism. What I know now is that I have to accept it. I cannot change it. I have helped to change some of Jon’s personal circumstances, so that he does have a blue badge, he has a social worker to support him and hopefully will have some carers to see to his daily needs as well as have some physical work done to his house to make it safer and more friendly for him.
This has been the way that I have had to express my love for Jon, by helping to get him the support he needs, but I have also had to learn to let go and then to actually do it. I have had to let him be autistic. I have had to accept that he cannot love me the way that I would like, or the way he wants to either.
So this is my love song to Jon, he has so changed my life, how I see things, he has opened my mind and my heart and he has allowed me to fly, I pray and hope that he gets the same in return.
For anyone anywhere who loves an autistic man, may I send the blessings from a woman who has and does and I hope this small story might help a little.