Why Daisies?

Daisies are a humble flower. There are many other blooms that are more showy or smell nicer, but daisies are resilient and I like that. They also happen to be the flower of my birth month – April, which is, as chance would have it, the international month for autism acceptance.

So, for me, daisies have come to stand for what it means to me to be autistic. Like the daisy I am resilient. I have learned to bloom where I have been planted and even though it hasn’t been easy. I wouldn’t want to be anything else.

Dancing In Times Of Trouble

Content warning: anxiety/ coronavirus

There has been a lot to process over the last weeks and it hasn’t been easy to absorb the ramifications of all that is happening world wide just now. It’s natural for all of us to feel overwhelmed and uncertain, because we have never lived through such a time as this – there is no road map and officials are having to make it up as they go along.

It’s hardly surprising, then, that there has been an avalanche of memes and dark humour cascading down through social media as we all try to cope with this new reality in our own way. It’s been interesting for me to notice how many of them are along the lines of introverts/autistics finally coming into their own and relishing the idea of social isolation

This is far from the truth of course because those memes are based on a stereotype. Many of us in the neurodiverse community are struggling right now. These are uncertain times for everyone but autistic people often find it much harder to adjust to changes in routine than those who are neurotypical.

Anxiety is an ongoing issue for me as an autistic person and I am not alone in this. Although it’s not something that is screened for when reaching diagnosis, for many of us anxiety walks hand in hand with our autism.

For me my anxiety stems from uncertainty. I need a detailed plan for pretty much everything in life and if there is not enough detail for me, my anxiety levels increase commensurately. I often play the thousand questions game in order to extract enough detail about even a minor event or happening in order to feel secure about what’s going to happen.

I am probably not the only person feeling unsettled at present but for me and many other autistic people the degree to which we experience it can be disabling. It is virtually impossible for me to get the degree of detail I need to feel better because even the experts are struggling to stay ahead of this threat. Having found myself battling the compulsion to go out and lick door knobs just get it over with, I decided I needed to be more proactive in minimising my anxiety. For me, it’s not worry or anxious thoughts. It is a build up of tension and sensation I carry around in my solar plexus, which can keep building until it is almost unbearable.

Deep breathing can help, but it’s effects are transient. Mindfulness and calming music slide off the anxiety like water over an oily surface. I enjoy both of those activities but they are not helpful in the face of this overwhelming sensation.

What really works is loud, fast paced music with a really strong beat. I have one song in particular that works so well, it is now my go to antidote. I think it is something to do with a combination of the drum beat, the vocals and the other instruments used in the song. It’s a very rhythmic piece and that seems to help.

The other thing that helps is moving to music. This is something I have done off and on my entire life. These days it has a name – stim dancing and it’s used by many autistic people all over the world as a way to regulate their emotions. It’s a fantastic outlet and best of all, anything goes – move however you want. Naturally I recommend stim dancing as a way of releasing tension to everyone regardless of your neuro type. There are plenty of YouTube clips to give you an idea.

So as world events unfold you will find me here with my loud music dancing to the end of the world. Stay safe everyone x

‘We’re All A Little Bit Autistic’ – Aren’t We?

Along with labels such as ‘high-functioning’ vs ‘low-functioning’ one of the things others can say that will make me cringe, and maybe even die a little on the inside is the throw away line – ‘oh well, we’re all a little bit autistic.’ I acknowledge that in some instances it’s said with the best of intentions. Maybe the other person is trying to make me feel better by reassuring me that everyone has a few quirks. At least that’s what I tell myself in my more charitable moments.

Why is this one of the worst things you could say to an autistic person? Apart from the complete lack of sensitivity, you mean? Well, it is untrue. Not everyone is autistic because, for a start, if they were supermarkets would be much more sensory friendly places to shop already, instead of some chains offering a token hour one day a week.

To meet the threshold for a diagnosis of ASD someone must have significant difficulties in five out of seven criteria currently used to screen for autism. Many of us struggle in all seven. In my diagnostic report I have difficulties with 1. Social-emotional reciprocity 2. Nonverbal communicative behaviours used for social interaction. 3. Developing maintaining and understanding relationships. 4. Stereotyped or repetitive motor movements, use of objects or speech. 5. Insistence on sameness, inflexible adherence to routines or ritualised patterns of verbal or non verbal behaviour. 6. Highly restricted, fixated interests that are abnormal in intensity or focus. 7. Hyper – or hypoactivity to sensory input

Although I have varying degrees of difficulty for each of those areas and they may be modified by my ADHD, I struggle with all of those things daily to a greater or lesser extent depending on my energy levels, the actual environment I’m in and the reaction of those around me. So for someone to say ‘we’re all a little autistic, you should see my spice rack’ *mimics compulsively rearranging little bottles* is dismissive and hurtful. It’s another way in which my experiences as an autistic person are invalidated and minimised.

So what can you say to someone who is brave enough to disclose to you that they are autistic? How about something like – ‘ can you explain to me what autism is like/ how that affects you?’ Or ‘do you need help with anything ?’ Or ‘ that explains a lot about …..’. And of course, ‘ I’m here if you need me.’

One thing to keep in mind is that each of us on the spectrum experiences our autism in a way that is as unique to us as any other aspect of our personhood. We won’t be the same as another person you know who is autistic, so it’s always a good idea to ask us how our autism affects us individually, – you may be surprised.

A Slow Reveal

I’ve gradually started to ‘come out’ as autistic to more people lately. It’s been an interesting journey to reach the point of gaining an official diagnosis and even once I knew myself I was autistic and then having that confirmed, there has been so much to process I had little energy left for thinking about how to let others know.

Now I am feeling much more comfortable in my newly revealed skin. It’s not so new and fragile anymore. It’s hardened up enough for me to feel a little more resilient and capable of handling others responses to my diagnosis.

That’s not to say it’s not deflating and sometimes even hurtful when I’ve taken the risk to open up to someone and their response is less than I’d hoped for. I mostly get ‘well we’re all a little autistic’. This is a topic worthy of its own post so I intend to tackle why this is one of the most inappropriate comments you could possibly make at a later date. Also up there on the guaranteed to get the hackles up scale is ‘ really? You don’t look/act autistic’

Having said that, I have had some overwhelmingly affirming responses too. Like the friend who said ‘that just means your brain is wired a bit differently, that’s all’ and carried on with our conversation without blinking a proverbial eyelid. Or the friend who said ‘That’s very interesting. That’s why you’re so dynamic and creative then I’d wager’. And the friend who listened with attentiveness and without judgement as I explained what happens when I go into a full scale autistic meltdown.

I understand it can be hard to know exactly how to respond. I’m the queen of socially awkward moments, I get it. But it’s important to remember if someone trusts you with something as intensely personal as their autism diagnosis then you need to think how you respond. Especially as for many of us our experiences have often been invalidated over the years. All you really need to say is ‘so how does that affect you? Is there anything you’d like me to know about that right now?’ and then listen when we tell you.

Every neurodiverse person is different. We all have different stories, gifts, strengths and weaknesses. What really distresses me may not bother another person on the spectrum. Also, my difficulties may be hidden so don’t assume that just because i don’t ‘look autistic’ that I’m not struggling and in need of your support.

Thinking It Over

I thought about my mother the other day. That’s not unusual, I often think of her since she passed. But this time it occurred to me she would have been pleased and receptive on hearing my autism diagnosis. I think that would have answered many of the questions I saw in her eyes growing up.

Of course, I couldn’t interpret that look as a child. It is only with hindsight and in the light of my diagnosis that I have been able to work it out and put a name to it.

I think it would have made both our lives easier if we had known, but back then in rural New Zealand during the 60s and 70s, autism wasn’t a word we had heard of. We barely understood learning difficulties like dyslexia!

My mother had endless patience about some things. She never once complained when I played the same record (and sometimes the same song) over and over ….. and over and over …. and over and over – you get the picture. She sat at the piano and played the same two pieces over and over so I could dance to them and always caught me when I flung myself off the top of the wardrobe while she made my bed.

But back then it was also important to fit in ( maybe it still is in some communities – but I’d like to believe not) and I did do things that would have seemed very out of place in a neurotypical world.

That’s where things got a little hard for both of us and why I think she would have appreciated knowing why I was so odd at times. Without any other frame of reference, my mum did what she thought was best and came down hard on those things she thought meant I wouldn’t fit in. She disposed of all the funny objects I became attached to and I can remember being very fond of one item, a funny old kettle I found at the beach on a school trip. It took her a great deal of persuasion to detach me from that one.

I had one particular stim she could never stop me from doing as well, no matter what she tried and I know she found it embarrassing, even as a child. Eventually, I found less obvious ways to stim and it was no longer a point of friction between us. but every now and then I’d catch that look over something I’d said or done – usually it was something I’d done that was considered rude, although I never knew why.

Since my diagnosis I find myself revisiting certain memories and revising them in the light of it. It has been an enlightening and lightening experience. All of a sudden certain things make sense. Sure, at times there are strong emotions attached to those memories but I have found freedom through it and I’d like to think my mum would have too.