Sunday, February 17, 2019

I’m 47 and have lived mostly in different parts of Wales, UK, but have been settled in Cardiff, Wales, UK for the past 20 years.

My employment background is engineering/technical but 6 years ago I made a change to work in the charity sector, on autism projects – I didn’t plan to work as an autism professional, my move was made in desperation as I was undiagnosed and really struggling to maintain a decent job - mostly due to my social differences, and partly my need for literal and clear instruction and communication of expectations. I’d been made redundant in 2009 and things went downhill from there, I moved from working for a consultancy, having autonomy and working completely independently for the most part and mostly with men, to contracting or working in larger open plan offices where my immediate team were men doing technical activities, but the rest of the office was populated with very *typically* social women (and some men) who were performing the operations and administrative roles. The workplace politics, expectations and judgements, and the sensory environment, were too stressful for me. I was desperately looking for any kind of work and saw a post advertised part-time with an autism charity. I love what I do now and have adjustments in place which mean I’m protected from malignant, neurotypical social communication and interaction and also, I have 100% autonomy over how and when I do things. I work from home (never in an office with other people), don’t have to attend meetings and social occasions unless I want to and can travel in a way that suits me. I am the highest fee earning consultant in my organisation and am consistently around 70-80% more productive than anyone else on my team.

People might be surprised to know that I am a lead drummer in a 50-piece Samba Band. People often are confused about my hearing and noise sensitivity profile. Drumming, an activity where I know what’s coming, I’m in control and can anticipate, and that follows a strict pattern and melodic rhythm that I move to (it’s like coordinated stimming!) is almost tantric and very energising. There’s also some good evidence that shows that drumming, as an activity, promotes brain plasticity and the associated improvements in cognitive processes, executive functioning etc. Whereas background conversations when I am tired, overloaded or trying to concentrate or focus, particularly women’s voices which are higher pitched and that tend to chat about social topics that just make me really agitated, can be intolerable or push me into meltdown.

My biggest acomplishment so far is an accidental one. When my daughter was born, I did things by the book and purposely sought out various opportunities to “socialise” her - doing structured, social activities with other people such as conservation or creative community projects. In taking her along to these groups and events, I built my own wonderful support network of people who accept me as I am and have been so supportive. My life is very rich because of this, I spend weekends away with my band and have even toured France with them. They are always there for me and I am always grateful that there is someone that I can chat things through with, that checks if I’m ok or that can offer advice when I need it. They are my family.

I had a very traumatic upbringing of abuse and neglect, and operated in survival mode for most of my childhood. I often reflect that perhaps the only reason I am resilient and strong, is because of this background that I have and that if I’d been nurtured, I wouldn’t be as independent as I am or resilient enough to cope with and overcome the things that I do. I am very interested in how this resilience can be built without being traumatised of course! I think that a lack of resilience is very difficult to try and address in adults and that this work needs to be done early with children, although everyone should work on their resilience no matter how old – do not let your coping skills atrophy! the more you do, the more you can do.

Although I didn’t always feel like this, especially before I realised I was autistic - I don’t want to change myself.
I’ve been thinking a lot lately about something I believe strongly in – in that autism acceptance, rather than understanding*, (*we should never have been talking about understanding, as I see it all that has done is give ableists a base to try and change what we do to fit their neurotypical model) will only be accomplished when the numbers of high profile, “out” and visible autistics is high enough – it’s a numbers game as I see it. We’ll not get funding or recognition or acceptance until the diagnostic statistics reflect the true number of autistic people – I suspect, based on what I think I know about autism and my own interactions with people that I meet every day (both in my professional environment and outside of it), that the stats are much closer to 10% of the population being autistic than the 1-2% that is typically quoted throughout Europe and the U.S. Of course, it’s problematic getting a true or accurate statistic and it’s a catch 22 situation – funds and government budgets won’t be allocated to diagnosing our population until it’s understood that a significant proportion of the population is autistic, undiagnosed and struggling - but we need people to be diagnosed in order to get meaningful stats so that governments start taking notice!.

Already in the UK, some of health authorities and boards are refusing to diagnose people like me as we are not considered in enough “need” as opposed to non-verbal autistics, those with learning disabilities or with high support needs for day to day living – despite the shocking evidence that lack of diagnosis and support for people like me leaves us devastatingly vulnerable to suicide and self-harm… my mission for the rest of my life is to try to make a difference to the worlds’ acceptance of autism, whether it’s by supporting or encouraging people to get a formal diagnosis so that they can be counted, or influencing employers and organisations to change the way that they do things, by helping them to understand the undiagnosed population exists, without being forced to because the “numbers” say so.

I wish that neurotypicals could see how autistic people relate and behave in autistic space – and that we can disagree about really emotive subjects without arguing or upsetting each other, that we cooperate and help each other not because we “like” or “respect” someone, but because it is the right thing to do, to help someone, to be kind where you can when someone is suffering or struggling. I wish that neurotypicals innately understood the difference between cognitive empathy and affective empathy – and how much simpler, and more beautiful life can be when you mean what you say and say what you mean without any ego (as I believe our community do).

The resources that I’ve found most helpful have been from reading and researching autism on-line and finding autistic academics and professionals such as Damien Milton and Janine Booth. I have had some transformational therapy following my diagnosis, from a neuro-diverse counsellor, who adapted a strategy/action-plan based approach to suit my visual and logical way of thinking about issues and difficulties. I disclose to gain acceptances rather than trying to mask or fit in, sometimes by using a brief written list of things that are helpful for others to do, particularly if I’m visibly anxious or agitated or withdrawn in a situation. I don’t work in offices with others or have to collaborate with others. In terms of supportive approaches, I am completely opposed to ABA – I have many friends that are still suffering PTSD from early childhood ABA interventions that were forced on them.

I have a friend who I call my “neurotypical” translator. She’s great because she explains neurotypical behaviour to me in a way that is straight forward and that I can understand, without any judgement or expectation about how I should feel, react or behave. I was explaining to her recently about how I regularly quote her in my autism training sessions. She is a trainer on challenging behaviour and youth support and she exclaimed that she also quotes me when she’s talking about autistic young people, families and parents. As we chatted I recalled that I’d been called out during one of my sessions when I said “my neurotypical friend”…and someone pointed out that I sounded really biased, like I had just one neurotypical friend. My friend responded that she had also been called out for calling me her “autistic friend”…and of course we both know lots of autistic and neurotypical people that we class a friends, but because our relationship is particularly close and because of the nature of the work we do, we define each other in the context of our training sessions by our neurology! We both found this funny…but am striving to use different language now to avoid any problems!

I want to tell other autistics - connect with our community in whatever capacity you can so that you can help others, accept help, feel confident about being autistic and try to do everything you can yourself to be happy.
I was born in 1972, was a gifted mathematician as a small child but very withdrawn at school or in big groups, yet had a vivid imagination that I used to escape through writing, art, imaginative and creative fantasy play. I was rejected by my mother and siblings (except for my brother who’s also autistic), and bullied relentlessly by other children (and some adults) when I was young because I was so different, passive and naive…I was fairly stereotypically autistic really, with a high IQ and the associated appalling mental health that started as a young child and continued into my adult life until I realised I was autistic. I would be diagnosed as an infant if I was born today.

Things didn’t click into place or make sense when I was formally diagnosed, as I’d already known for 10 years before that that I was autistic. Receiving my formal diagnoses was like a rebirth, a second chance and the start of my real life. I felt such a confusing mixture of emotions on the day that I was diagnosed it’s too difficult to explain…I could sing it, drum it or paint it, or model it, or dance it for you…but words can’t express how I felt. Since my diagnosis my life has been so much brighter and b

No comments:

Post a Comment