Ok so please indulge me because this is going to be a very personal blog about a journey I have taken in life to get from where I was to where I am. Along that journey there have been a number of influential people but one is – and has always been – very significant. She is an Autistic parent of an Autistic child – my mum. This is not going to be a sloppy story about how everything was OK and there was love all over the place and Hallmark cards and hearts and things. My life has never been like that. Has anyone’s actually? Mine and my mum’s story – like many family stories – is messy and complicated with anger and disappointments and so much love your heart and brain feel filled to the brim. Family life is usually imperfect and confusing and infuriating in my experience but it can be magical too.
I am 41 and my mum is a few years or so older. We now both have an offical diagnosis of Autism / Asperger syndrome but neither of us had that diagnosis at the time we probably would have benefitted from it most. We are both of that sort of lost generation of undiagnosed Autistic children who put up with hell every day in the school yard and feel alienated and isolated and that we were the only person like us in the world. Embarrassment and shame followed me for endless years, the world was confusing and scary. People took advantage of us and abused, bullied and discriminated against me just because of a little divergent neurology.
My mum is not quite the same as me. We are both disciplined and dedicated, hard workers, passionate about what- and who – we love. We are both in that logical mould of intellect, have passionate interests (for me Autism advocacy and cats and for my mum nature, particularly fungi and insects). We approach challenges with logic and intellect. When a friend tells us a problem we tend to respond with advice, almost a default setting I think. Both of us are on a learning journey to stop doing that! Our main point of difference is the introvert / extrovert division. My mum would be in hell if she found herself onstage in front of a crowd, whereas I take the stage with joy and wave to the audience like I’m a real celebrity.
My relationship with my mum is unlike any other relationship I have. I think that may be true for most people. For us there were testing challenges and grief. Almost like gold or silver refined in fire, our relationship now shines, but it didn’t used to.
Some of you may know that my life twenty years ago was so different from my life now that it is almost as if there were two Jeanette’s – the criminal, unwell, homeless, defeated broken one and the advocate and author and professional me of today. I try not to reflect on those times as I am so filled with shame at the sadness and anger my actions caused. One thing I do remember fondly was my family- all of them – and how they responded to my criminal behaviour and institutionalised existence. My grandmother in the UK and I corresponded every week when I was in prison. I have a big box chock full of the letters. I haven’t managed to read them in twenty years – i’m waiting for the right time I think. My parents standing by me, parting with money and peace of mind to support the walking disaster that I was. They visited me every month. I looked forward to the visits a lot – my favourite thing in the world. Of course I never told my long-suffering parents that. I would argue with them and be dismissive and ‘meh’ in the way only a drug addicts and criminals with a high intellect and a mind filled with anger can.
When I finally bade farewell to the life of prisoner – perpetrator and victim – my parents were right there. I have photos of my first day of freedom in February 2000 standing next to my mum who had come to help me settle into my ew world. I’m not the best at deciphering facial expressions but the me in the photo looks a little scared as does the picture of my mum. We were doing this journey to the positive together but I don’t think either of us quite knew where it would go or how we n might get there. Over the next few years I enrolled in university and became more espeablishced as a positive person. I visited my parents a lot in those first few years of freedom and ambition.
I still retained that terrible thing that thirty-somethings often do when they just see the faults of parents. I got over that by becoming really unwell with mental illness at the age of 36. An amazing unintended consequence of a couple of years of terror and confusion was a far stronger relationship wth my mum. My parents, and particularly my mum, were there for me 100 per cent. We were vulnerable together and it was wonderful. All that criticism and judgement I had just vanished and now we are our own little club of two.
As an Autistic person, my mum was given what I term ‘unhelpful help’ from people who thought all my problems were my mum’s fault. They were not and had never been my mum’s fault. Having an Autistic parent for me has always been a positive because my mum always knew how to reach me, what to say. We see the world through quite similar eyes and that is a good thing. As a child I could tell my mum absolutely anything and there was never any blame or judgment. Apparently one of my friends when I was going trough the horrors of my twenties, a woman in her forties, actually said to my mum – to her face – that she would have done a better job of raising me than my mother did. Any of you reading this who are parents will know what a horrible, invalidating and incorrect thing that was to say. (My mum is a complete angel and actually made peace with that woman a few years ago).
Now that we both have our Autism diagnoses and have reconciled any arguments or misunderstandings, I feel so close to my mum – inseparable and completely trusting. Our relationship ad lives have gone through some awful things but it has somehow brought us together.
I hate that some people assume Autistic parents will not be able to raise children well. My mum raised me and while I had a horrible time in the past, I am now considered a role model and a very positive person who helps others. My Autistic mum has been the strongest influence on my character and she has set a great example. Autistic parents tend to have different positives and difference negatives to non-autistic parents. My mum is an Autistic parent and she raised my brother, who has three very lovely children himself and works in a responsible public service role, and she raised me and I think I’m a fairly decent human being. So thanks mum. You are the best person ever. You enabled me to do all the things that others said I wouldn’t.