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  • Community Contributor

The #ActuallyAutistic Culture and Identity Project S32

Name, and/or twitter handle: @NortherlyRose

Pronouns: She / they

Parent/non-parent: Parent and grandparent

Age when you selfdx/were diagnosed autistic: 58

1. Did you feel you were different from others as a child?

From an early age I felt different to my siblings. In fact I thought I must have been adopted. Then in my teen years I noticed that my nose had become identical to my dad’s, which somewhat negated that theory! I got a free place in a highly academic direct grant school at 11. I was from a very different background to the fee-paying pupils, who already knew each other from being at junior school together. My lack of a best friend, and the fact that I was on the margins of friendship groups, made sense because I was the new girl. This disguised the fact that I was actually struggling socially because I was autistic. I was painfully shy in the most agonising way, but if there was something I felt passionate about I would speak up. I spent a lot of time in my bedroom reading, or doing artwork. Social justice was also important to me and I volunteered in long stay hospitals. I came across to other people as a serious child and young person. I smiled a lot but my smile meant “please leave me alone” rather than “I am happy”.

2. Are your parents supportive of you as an autistic individual? My parents were in their eighties by the time I realised I might be autistic. I’d studied autism and worked with autistic people in my professional life so I already knew quite a bit about it. But my parents had very little experience or understanding of what being autistic really meant. It was confusing for them. My siblings got my parents to think back to my childhood and produce some evidence for my autism assessment. Things that they saw as unexceptional were in fact autistic. We often have similar traits to other people in our families, meaning our ‘autisticness’ gets downplayed. It was obvious once I’d thought about it that the emotional outbursts I’d had as a young person were autistic meltdowns. Although my parents struggled to understand my need to get an autism diagnosis so late in life they have always been supportive, as have my siblings.

I’d been with my partner for 12 years when I discovered I was autistic. It was tough for him. I needed a lot of personal space and time to come to terms with things. We quickly realised how impossibly difficult it is to get couples’ counselling if one of you is autistic. Both of my adult children have also been extremely supportive. It was a shock for them to get such unexpected news about their mum, but it helped to explain aspects of their childhood that had been difficult as well as fun stuff we enjoyed together.

Post diagnosis I went through quite a volatile and unsettled phase, as well as being completely burnt out, and my family really rallied around me.

3. How did you determine your ethical system? Injustice of various kinds has been very obvious in many of the places I’ve volunteered and worked, like long stay hospitals, children’s residential care, mental health services, prisons, charities, and universities.Coming across things that were clearly wrong crystallised my values. I became aware that expressed values don’t always translate into behaviour. Much of my career has been driven by wanting to make things better. Trying to change things from inside organisations was extremely challenging, but I felt compelled to try to make whatever difference I could. It wasn’t always possible though, and I had to distance myself from situations or organisations I had moral qualms about. Uncovering abuse or serious wrongdoing always forced me into doing something, even though this often came at a significant personal cost.

4. In which way does your private self differ from your outward facing front? I’m not sure that there is much difference these days. When I was a social worker people I worked with expressed surprise that the inside of my car wasn’t pristine. They seemed to imagine all aspects of my life would be well managed. That wasn’t the case. It still isn’t. I prefer to spend time on things that I consider to be important like researching interesting facts, rather than worrying about keeping up appearances. Recently, however, I’ve had a big declutter at home, driven by my frustration in not being able to find things, and my growing awareness of the impact my collecting habit was having on the rest of the household who are more minimalist than me.

5. Do you enjoy finding mistakes/errors in the production of films and television...continuity etc.? I’m usually too busy struggling to keep up with plots and trying to remember who’s who to notice continuity errors in films and TV programmes. But when I’m reading books or articles I always spot typos. It’s only recently that I realised doing this could be construed as ableist. Linguistic ability is the closest thing I have to a super power, so letting go of perfectionism has been a tough call. You will find typos, random punctuation and mismatched tenses in my Tweets now, I’ve learned to live with ‘mistakes’!

6. What are the top 3 traits you look for in a friend? I never really set out to make friends because I don’t know how that works. I am very bad at maintaining friendships so the top trait I would look for in a friend would be tolerance of being neglected. I think about people far more often than I actually get in touch with them. It helps to have interests in common but more important than that is a similar way of looking at the world in terms of values. I tend to get on well with kind, deep, and quite complicated people. Skipping over 7 & 8

9. What would you do with your life if you had unlimited funds? If I suddenly became very wealthy I’d use the money to set up a Community Interest Company run by autistic people, for autistic people. I’m not sure what the focus would be. Probably something to do with escape, relaxation and sensory joy, like a retreat centre and glamping field near the sea, or next to a canal, with fleets of campervans and boats. 10. What does freedom mean to you. What does it entail? To me freedom is having the time, energy and resources to pursue my interests. At various points in life I’ve been consumed with the day to day demands of work, just trying to survive. That can suck the joy out of being alive. I love being able to go walking in the countryside or on the beach whenever I want to. So part of being free for me is being able to drive. I’m not materialistic but worrying about lack of money really grinds people down and robs them of their liberty. In relative terms I am not well off, but I feel wealthy because I can live as I want to these days.

I’m enjoying much more freedom now that I’m semi retired. Time is a really valuable commodity to me.

I am gradually learning how to escape from the after effects of trauma. That is the most significant freedom of all.

11. What does success mean to you? Because of my very late autism diagnosis, I’ve been doing a lot of work over the last three years to come to terms with the past. So much of what happened needs reconsidering and reframing now I understand who I really am.

The biggest challenge of this last phase of my life is to be my authentic autistic self, and to forgive myself (and other people) for some of what went before.

“But, for me, success is not a public thing. It's a private thing. It's when you have fewer and fewer regrets.” ~ Toni Morrison

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