Jane: Embracing autism and being kind

When were you diagnosed as autistic?

I was diagnosed in 2008 and aged 37. It made so much sense of my life and explained much of my history. 

What is it like being autistic for you?

In incredibly simplistic terms, for me, autism is like being in a tiny room with a seventy inch tv inches from my face, set at the highest volume, brightest setting and permanently on. I find everything over whelming. Too loud, too fast, too noisy, too smelly and too much. I am hypersensitive to almost everything except when I’m overloaded and then everything shuts down and I’m the opposite. I have a superior range comprehension IQ and a well below average performance IQ. I’m an amazing human being but only in theory! ?That’s ok though, now. I am gullible, often naïve and not always good at recognizing an untruth. That’s not been much fun and I keep my world relatively small now.  I have some amazing friends and loved ones. I don’t cope well with more dominating or tougher souls. Being shouted at, even at 49, makes me cry!  I have to say though that I’m ok not coping with people like that anymore. I don’t have it in me and I really love, for the most part, my tiny, gentle, quiet life. 

I would not change my autism. It gifts so much. Every ocean wave is like looking at the sea for the first time, I love having that visceral response despite repeated exposure. Nature, love, kindness etc. all these feelings are just as profoundly moving to me as they’ve always been. I love that about my autism. I love that I am always only ever me and I love that my sensitivity has not been lost over time. I could probably write thousands words more but really autism is who and what I am, it doesn’t solely define me but contradictorily it also does. I am autistic and am many other things too. 

What has your experience been with Assert, as a long-time service user?

I can honestly say that being a member of ASSERT has been the most amazing experience. I’ve been supported in getting diagnosed, attended life skills courses, advocacy support, benefits support. Jane Frost personally gave me lots of advice and help, helped me attend drop ins, gave me volunteering opportunities. Sarah has supported me similarly, helped with issues with statutory mental health services, housing issues, visited me at home when I wasn’t well and it is thanks to Sarah that I’m still here. ASSERT have been a lifeline and I couldn’t have gotten to where I am now without their help. 

How have relationships nurtured in Assert helped you as a person?

There have been times when I’ve felt uncertain as to what to do or how to proceed and ASSERT have always been there for me. It’s been both immensely supportive and incredibly reassuring. 

Which activities do you enjoy the most to spend your time?

I spend my time reading, writing, singing, photography and playing guitar and ukulele. I love walking with Lola. I meditate and practice mindfulness. I’m in a choir and since lockdown, We’ve been a virtual choir. I am on the committee and help with administration. 

Could you tell us more about your companionship with Lola?

I would be lost without Lola. She makes so much possible for me and I always feel happier, calmer and safer with her. She’s very kind, very sensitive and we are devoted to each other. Since last March We have not been apart from the other at all, except for her booster jabs. I love her dearly.

How have you been caring for yourself during the lockdown? Do you have any tips for other clients?

I’ve been sticking, as much as possible, to our usual daily routine. Our long walk in the morning is always a mindful one. Taking the opportunity every day to connect with the natural world around me and giving thanks to the Universe, has become almost a daily necessity for me. It helps my anxiety and my positivity to remind myself of all that is beautiful in the world. I do guided meditations. Keep in touch with my Church and choir family. Keep a gratitude journal. Read The Happy News. Sing. Cuddle Lola. Laugh. Play my uke or guitar. I don’t watch the TV or read a newspaper but I keep myself informed of Covid via the WHO or the NHS.

I’ve always been quite fussy about cleanliness and so my behavior hasn’t had to change too much. Having said that, I’ve struggled with the behavior of some others during lockdown and no longer go to the supermarket. I’ve felt shaken at how badly some people have behaved and cried quite a bit. I put on quite a bit of weight too eating biscuits in the first lockdown. Having said that, I’m on the path back to good health. It’s a slow but steady path. I have removed sugar entirely from my diet in the past couple of weeks. 

My tips to anyone else would be to try and be as kind to yourself as possible. Be kind to your friends, family, neighbors, each other and yourself. Be gentle and remember that this is difficult and complex for every one. No one is getting it right or wrong, We’re all just getting on with it. If you need to take small steps, or if you need to stop then you must and it is always ok to reach out and ask for help. We should all be helping each other I think. 

If you would like to eliminate one myth around Autism, what would that be?

One myth? There are many I could mention! My top two are that autistic people lack empathy and that it is a disorder.