Living with someone not on the spectrum is as difficult as living with someone on the spectrum. In our household we are split in two: my son and I are autistic and my daughter and husband are neurotypical. I find it difficult to parent and be a wife some days and especially to a neurotypical daughter and husband – I can’t emotionally empathise with them and I get just as frustrated as they do with me for sure. I have a mind blindness and if I don’t feel it or see it then I don’t get it, but then on the flip side if I feel it and see it why don’t they?! I get so emotional I cry and release all my emotions at once and get caught up in moments that my husband and daughter don’t quite get and to be honest sometimes I don’t get it either. I wear my heart on my sleeve and can’t hide behind my emotions.
I need routines and structure I like to plan and organise things and it’s difficult to have an element of surprise and I know this can drive Tilly and Dan mad to say the least. Finn is also so much like me so it is like in full stereo for Dan and Tilly.
I get frustrated with myself sometimes I can see what’s happening and unravelling right in front of my eyes but I can’t seem to change it or stop it, I feel like it’s out of my control and that upsets me!! I also feel I sabotage myself and miss out on things because I find it hard, I really don’t mean too but it is so difficult for me to fit in and absorb the world. I plan so much that the enjoyment is taken away from it as the only thing I can’t control is other people and that to me is like trying to train a wild horse in the snow!
In a month I will be going to Ireland to watch Guns N Roses a band I love (next to Metallica) I walked down the aisle on my wedding day to sweet child of mine and going to watch them live is amazing I am so excited and nervous at the same time. It’s all planned I know where we are staying, where we are going and how we are getting there, but what I can’t predict is my mood and other people. I have golden circle tickets which for any fan is the ultimate but for me it fills me with dread (I booked them by mistake!) but it fills my husband with dread just as much as me but for a very different reason – he knows that I will hate it, have a moment and end up right on the edge of the whole concert miles away from the stage and not really enjoying it, but I want to enjoy it I want to be right up there listening to the band and absorbing it all but I know it’s also my worst nightmare as I will be surrounded by unpredictable people that I don’t know that I don’t know what they are going to do , just being surrounded by people scares me. It’s crazy really – as I know I can’t control it but all I want is to be in my own world listening to Guns n Roses focusing on the greatness of it all – but I feel nervous beyond words wanting to just enjoy it but it scares me. This is when I want to be neurotypical to fit in and not worry to be able to just go to an event and enjoy every minute of it not to worry about leaving before the crowds or where to hide so I don’t have a panic attack, not to make it awkward for my husband who I know all he wants is to enjoy it too without having to worry about me. I get worried that I might not find my way around the concert it’s an outside event and I don’t know the place , what happens if Dan needs the loo and leaves me to then not get back to me. But for me the biggest regret / fear is that I feel sometimes he misses out on life just as much as I do, and that he lets me do things but knows deep down that actually neither of us enjoy it because we worry about the autistic moment.
I look around at friends I have lost as the my think I’m rude, stubborn or I just don’t fit in with them anymore and I feel that I have lost people and haven’t meant to do so. I will always just be on the edge of people and not quite fitting in my best friend is my husband and unfortunately I lean on him so much – he is my carer too and that makes me feel a little sad deep down and what makes me feel sadder is that my daughter is starting to be just like him – she knows what to say and be around me to look after me I’m 35 and she is 10! That makes me feel awful. But at the same time she has her dad and together they understand deep down and we can joke about it as you have too really otherwise we will all go mad!
But living with neurotypicals for an autistic person is confusing, frustrating, annoying and trying but it helps us learn and realise that we sometimes have to fit in to the neurotypical world whether we like it or not!! And for the neurotypicals living in our autistic world is just as confusing, frustrating, annoying and trying but sometimes they have to fit into our autistic world to create this balance.
It just means we all have to work that little bit harder than most families but we get there eventually!….