Dancing Into The Future

Dancing Into The Future

OLYMPUS DIGITAL CAMERAThose of you who’ve visited my blog before will remember it as Married, With Aspergers and you might be wondering what’s happened. It’s still me writing, all the older posts are still here. But the old title no longer felt relevant to the direction my life is taking now.

I identify as autistic and use identity-first language when referring to myself, so it was out with the “With Aspergers” for a start. And although I’m technically still married that relationship is over. My previous post explains about that. So anyway, that meant “Married” had to go as well.

I spent a lot of time thinking of a new title. It had to reference autism because that’s the main topic in my writing. I thought about loading it with references to stuff I’m a fan of, such as Doctor Who, Firefly, Star Trek, Discworld and so on. But that would have made it long and unwieldy.

Finally this afternoon it came to me: My Autistic Dance. It’s short, the majority of its letters form the word “Autistic”. And the Dance part, well that’s something I enjoy. Indeed, along with hand flapping it’s what my body does when I’m happy or excited. And I’ve been feeling like that a lot recently. So my happy dance happens quite often.

Dancing for me is stimmy. The rhythmic movement naturally regulates my sensory processing when I’m in the throes of emotion. Because emotions bring a whole host of physical sensations: that’s usually how I recognise them. More than that, though, dancing is pleasurable. I love music, and my body just responds to it.

So this blog is now called My Autistic Dance. It’s got a new theme too with a warmer colour scheme. I don’t know about you but the old one felt a bit cold to me, lacking in emotional warmth. It certainly didn’t reflect the positive feelings I have about my current situation and the way I am growing as a person.

I’m getting more involved than I used to. You won’t only find me behind a keyboard on this blog and Facebook now:

  • I was very proud to have an essay included in Autism Women’s Network’s wonderful anthology What Every Autistic Girl Wishes Her Parents Knew.
  • I travelled to Ireland to join Fiona O’Leary and others (including at the last minute Emma Dalmayne) in protesting against the showing of anti-vaccine propaganda film Vaxxed in Dublin.
  • I accepted an invitation from Emma Dalmayne to join the committee of her South-east London-based community group, Autistic Inclusive Meets.
  • I volunteered to present one of the monthly “Lunch & Learn” sessions where I work. My talk will be called Understanding Autism.

There’s more to come, I’m sure, and I’m so excited to see where opportunities like these might take me. I hope you will be there with me and we can all dance together.

Image “dancing in the rain” by Hank Hession. Licensed under Creative Commons 2.0.

Alexandra Leaving

Alexandra Leaving

I’d thought about leaving so many times. Going back through some old posts last night, even back to when I first started blogging, it was abundantly clear to me that I had been feeling depressed, lonely and trapped for years.

It was something I discussed occasionally with people I trusted. Not that I had many of those. But I was always more scared by the uncertainty of the unknown than I was of remaining somewhere that didn’t feel like a home. My fears always drove me back.

I tried. But it’s hard when the love you once had has been replaced by fear. Too many angry outbursts, too many times when my needs were dismissed, too many times when my anxiety reached overload. I tried to explain but when I never knew how what I said would be received it was impossible to be completely open and candid.

Even when I did manage to speak up, the import of what I was saying became lost in translation. These weren’t shared feelings or experiences; I might as well have been speaking a foreign language. Situations where my daughter or neurodivergent friends would grasp it immediately, not need it to be spelled out in detail.

In the end it had become obvious that living in that place with that person was harming me. Day by day my mental health was declining with anxiety and depression making it difficult to function. I was struggling with work, I was struggling with self care. Well, not just struggling: I was failing.

I knew the signs. I’d been through similar times before although every time it happened it brought me further down, hurt me more, killed another piece of my soul. So this time I asked for help. I went to my doctor, I referred myself for counselling. And I talked at length with my daughter.

At my second counselling session I all but broke down in tears as I described how I felt, how a steady drip, drip, drip of teasing, controlling behaviour, threats (even when later retracted) and aggressive actions had built up to the point where I didn’t feel safe. It doesn’t matter what the motivation was, whether harm was intended: it was emotional abuse and it did cause harm.

I explained how I was afraid of losing my job because my mind was in too much turmoil to focus. I explained how every time I tried to think of what I needed to do to get away I quickly became overwhelmed with the magnitude of it all.

My counsellor was brilliant. She helped me organise my thoughts so that right in the middle was my goal, “To Get Out” and around it were the factors that I needed to address.

CounsellorBrainstorm
The actual brainstorming chart my counsellor made in our session

I came out of there feeling enabled, that this was something I could achieve. I phoned my boss at work and explained everything (and I mean everything) to him. Because I was that anxious about it I came straight out and asked him if I still had a job to get back to: he reassured me. I felt so much better after that.

In conjunction with my doctor I worked out a schedule that would get me back to working regularly, and my boss was very supportive, saying that I should do what I had to do, take as much time as I needed, and asking if there was anything I needed from him or the company.

So, knowing my job was secure I went to my bank to see about taking out a loan for setting up a new home, which went through without a hitch giving me the funds I needed to cover fees and buying furniture.

My daughter helped me look for a new place, and we made a shortlist. I prepared myself and managed to phone up and make appointments with the letting agents to view two of them, the first on the very next day which was a Saturday. To cut a long story short we both loved the first place we looked at and I started the process of securing the lease.

Just two weeks after that viewing I got the keys and moved in to the place I’m sitting in now, a month later. My home. And it really does feel like home. It’s a lovely flat in a beautiful location, but more than that it is a nurturing environment where I feel comfortable and safe.

To borrow the most apt of phrases, it is as if I have come through an unseen metaphorical door. As if I escaped from a cage to live in freedom. My counsellor was in shock at the speed of the change in me: she had never before seen somebody go from tears and hopelessness in one session to joy and optimism in the next.

I’m not the kind of person who worries that it might all be a dream and on waking I’d be back to the harmful existence I had before. I know this is real, that this is my new life. It feels like a rebirth, even more so than my gender transition. I’ve broken the shell that confined me, emerged from the egg and I’m stretching my wings.

I’ve said before that I never managed to live independently. I’m not independent now. Oh, I can feed and wash and clothe myself, and I can do the things that need doing around my home. But I also have a network of friends who I can turn to if I need support. I live by myself but I am not alone.

My friends on Facebook and the people I work with could see how happy I was when I got out of the situation I was living in: a relationship that was ultimately toxic and slowly killing me. I got my drive back, my motivation. I started to enjoy working again. I got up in the mornings feeling ready for the day.

And then, a week ago today, I was sitting here. Well, actually sitting and feeling restless, then getting up and pacing, then trying to sit again. My thoughts going round and round: should I? Should I not? A dilemma: do I tell someone how I feel? Is that fair to them if they don’t feel the same way? Might I ruin a friendship? Could it even work?

I talked to my daughter. I talked to a dear friend. I knew what I wanted to do, but I needed to work up the courage to take that chance. The emotions were so powerful that I was overwhelmed. But in the end I sent my message.

And then I waited. Minutes have never passed so slowly, a lifetime between each tick of the clock. They responded! This person I have fallen so much in love with loves me too!!! And so I am flying, lifted high by the joy of love.

Two people who felt some spark between them, who are both starting to grow and learn who they can be at a point in their lives when that had no longer seemed possible. It’s a wonderful experience to be sure, but how much better it is, how much more meaningful and joyful when there is somebody with whom to share the journey.

 

Hear Us, Accept Us! #AutismAcceptance2017

Hear Us, Accept Us! #AutismAcceptance2017

In a week and a half it will be Autism Acceptance Month. Yes, I say Acceptance, not Awareness. That’s important. Anybody can be aware of autism but accepting it? That takes effort. Effort that a lot of people show no willingness to make.

Another year passed. More autistic kids dead, abused, at risk. Where’s the awareness of this: this is the real tragedy of autism. We’re ignored. Ignored when we try to speak out against the people who make pretty for the cameras while they tell the world how broken we are.

Ignored when we call for justice after another one of us is murdered and the media focuses yet again on excusing the parents and care-givers because autistic lives are a burden and death is a release, don’t you know?

Ignored when we campaign against unproven and often harmful chemicals and “treatments” such as GcMAF and MMS pushed as cures by charlatans on unsuspecting and easily-misled parents of autistic children who are told time and again that autism is a disease and their children are damaged.

Ignored when those of us who have been through it tell you ABA–in any form–is abusive, coercive enforced compliance to arbitrary “neurotypical” standards of behaviour, where the only goal is to force us to appear indistinguishable at any cost to our long-term mental health.

Ignored when we tell people that we are not “vaccine damaged”: autism is genetic and we are autistic from birth. And still delusional conspiracy theorists like Polly Tommey, Andrew Wakefield, Robert Kennedy Jr.–even Robert De Niro–refuse to accept the overwhelming scientific evidence and insist that we throw more millions of dollars away instead of using that to help autistic kids today.

Ignored when we tell you that autism charities and organisations like Autism Speaks don’t represent us, don’t make our lives better, don’t listen when we tell them what we need. They don’t speak for us; they speak for themselves. They dismiss us, discredit us, portray us as not competent to participate in decisions affecting us directly.

This is why awareness will not do. It doesn’t even come close. We aren’t given a voice, we aren’t heard. All these people, the high-profile “allies” and “autism parents”, people like Anna Kennedy and Bob Wright have something in common: they are not autistic. They are outsiders who can never fully understand how we experience the world.

So why are they the ones who get to tell our stories, over and over? Where are our own autistic voices? With a mere handful of exceptions we are, like me, writing blogs for a few hundred readers, most of whom are also autistic. We’re preaching to the choir.

So if you really want to make a difference to autistic people, go and look for our stories. Read about our lives and experiences. Tell all your friends. And perhaps then we will have a chance to be understood and accepted. And we might one day get the same chances and rights other people take for granted.