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.

A Journey To Hell And Back …

… or,as it’s more commonly known as, a trip to the supermarket.

I have often referenced the difficulties of facing up to a trip through the aisles in past posts and articles but, until now, I haven’t put down in words what makes this so challenging, not just for me, but for many autistic people.

It’s one of the hardest areas to self advocate for because most people dislike grocery shopping and when you say you can’t cope with it they tend to reference their own dislike and think you’re being dramatic and it can’t possibly be as bad as you say. ‘I hate it too,’ they think, ‘but I manage it, why don’t you just make a list?’

I get it – it’s not always easy to see things from an autistic point of view and the gaslighting is not intentional, but to compare a neurotypical experience with the difficulties faced by the neurodivergent community is fairly callous. And no, Susan, making a list doesn’t help – but more on that later

First of all there is the sheer sensory overload to deal with. Supermarkets aren’t sympathetic places to those of us whose sensory systems are wired towards hypersensitivity.

The laundry aisle is a nightmarish assault on my sense of smell and the scents drift out way past the actual physical placement of these products. And don’t get me started on the fresh mussels!

The clashing of the trollies as they get shoved back into line and the rattling and clanging as people push through the entry barriers. The constant beeping of the scanners at the checkout and the low hum of conversation all add up, layer upon layer of sound, into a confusing and physically painful experience.

The lighting is horrendous. It’s too bright and for some unknown reason my local supermarket decided it would be a great idea to polish their concrete floors, so now the light bounces up from underneath as well! Some of the coolers have very bright fluorescent lighting that actually hurts my eyes to look at.

By the time I reach the checkout I am often feeling lightheaded and disoriented just from the effects of the lights alone.

Wearing dark glasses and ear defenders helps but what they can’t do is cut down on the visual clutter and they cannot help with my visual processing difficulties.

There is just too much happening in my visual field. The shelves are full of so many differently coloured packages and there are too many people all moving around in my line of vision.

This is a phenomenon I also experience when driving somewhere unfamiliar. It’s a stressful experience because my brain cannot separate the different things I am seeing into meaningful information.

In the days before online shopping I coped by partially shutting down my brain. Dissociating to a certain extent, I guess. So I was physically present but not quite there. The sensory overload still affected me and I would often still be shaking and dizzy by the time I got to the checkout, but I wasn’t totally overwhelmed.

Which brings me to the subject of lists – the holy grail of executive functioning, apparently. I’ve lost count of the times this has been offered to me as a way to manage all variations of my autistic struggles; a universal panacea for all that troubles me.

Firstly, the ADHD part of my brain can’t work with lists and believe me I’ve tried. For many years I would take to heart this particular piece of advice from well meaning people only to fail miserably and believe myself to be completely defective as a human being – after all you ‘just’ make a list, how hard can it be?

Secondly, if I did manage to make a list and attempt to follow it, it would necessitate coming out of my shutdown zone and experiencing the full force of the sensory overwhelm in order to follow it.

I can follow a list if it is in strict order. What I mean by that is, if the list reads butter, milk, eggs and I encounter those items in that order as I go around the supermarket the list will work for me. But, if the butter is first on the list but it’s the last thing I will encounter as I negotiate my way around the aisles, I’m lost. My mind can’t retain the fact I need the butter because I’ve moved down the list. The only way the list could work, is for me to go searching for every single item as they appear on the list, trekking backwards and forwards through the shop until I have discovered every item. Exhausting!

So a list is out. What I have done in the past is memorise where items are in the supermarket and when I reach them it jogs my memory to put them in my trolley. That kind of works providing I have a clear knowledge of what’s needed at home. This is why I often have 30 tins of baked beans but no toilet paper. It might work better if I wasn’t shut down and was able to think clearly about the actual gaps in the pantry but honestly, it really has been the best solution I could come up with at the time.

Having a support person, usually my husband, is tremendously helpful. He is able to compare prices, seek out the specials and make intentional choices about items that aren’t urgently needed but could come in handy and all I have to do is zone out and push the trolley.

These days supermarkets offer a sensory hour where lighting and sound is reduced to make it more comfortable for those with sensory issues – but it’s only an hour once a week.

The advent of on line shopping revolutionised my life. I never go now, except for the odd occasion where I’m feeling strong enough and only for one or two things, so I can zip in and out in no time. Mostly, I prefer to pay a bit extra and go to our local dairy or service station which are kinder on my senses. I’m pleased to say my days of travelling to hell and back are over and the extent to which I feel relieved by this tells me how much of an effort it was to do the weekly shopping in the past.

One Of The ‘Lucky’ Ones

I’ve been told I’m lucky because my autism is ‘mild’ and I am ‘high-functioning.’ To be honest, I find that a little irritating at times. My autism doesn’t feel mild to me. In fact there are some days when ‘barely functioning’ is a better description.

I acknowledge that sometimes when someone informs me I am high functioning they mean it as a reassurance – ‘don’t worry you don’t come across as autistic.’ Although they mean well, it’s not as kind a remark as they imagine, because, if I don’t appear autistic how can I convince others of my need for support in areas I desperately require it? (And what’s wrong with being autistic anyway?)

I long for a day when the wider allistic (those without autism) community can be persuaded to let go of functioning labels. I long for a day when just being autistic is enough to bring understanding to the minds of the neuro-typical population that this person may not present themselves in a way that is challenging to them but will, nevertheless, require some accomodations on their part.

Each individual with autism has a unique set of traits that will affect how they manage in the world day to day. Lumping them into broad groups such as mild/severe or low/high functioning does us a great disservice as it implies we are all hopeless cases or need no support at all. Both these assumptions are vastly erroneous and intensely harmful to every person in each group.

So if you hear I am ‘high functioning’ what does that really tell you about me? What does it tell you about what I might need or want you to do to ensure I don’t become disabled by my environment? I don’t think it tells you very much about me at all and it gives you no clue as to what you could do to help me when I need it.

It doesn’t tell you about the difficulty I have and the anxiety I feel navigating a new environment in a car because the visual overload means I can’t process what I am seeing quickly enough.

It doesn’t tell you about the times I have melted down at work because someone changed the plan at the last minute.

It doesn’t tell you about the anxiety around social functions or not having enough detail around a task or event.

It doesn’t tell you about the sensory overload that causes my brain to shut down if I’m in an environment that is too crowded, too noisy or too bright.

It doesn’t tell you about the difficulties I face because my vestibular sensing is too heightened and I feel as though I’m going to catapult off the face of the earth when I’m trying to pick my way over an uneven surface.

It doesn’t tell you how stressed and anxious I become when having to go into a supermarket or how long it takes to psyche myself up for it.

It doesn’t tell you how my executive dysfunction means I find it difficult to organise many simple daily tasks others do without thinking about them.

If you know those things then you know how to support me if I require it. Sometimes I manage just fine, but there are times when I don’t and I need assistance.

It makes more sense to me to talk about actual support needs instead of relying on functioning labels. This shifts the focus away from a generic one size fits none mentality and onto each individual and their own specific needs which will be as unique and varied as each person themselves.

It would also shift us away from the ableism inherent in functioning labels and help us realise we’re all disabled if our environment is unsympathetic to our needs and that can only be a good thing.

It Got Me Thinking

I read something the other day and it made me feel kind of sad, a little disturbed … unsettled. It wasn’t that it was offensive, but I felt burdened by it. It was a Facebook post, reposted by a friend which is how I came across it, by an autism mum explaining how dealing with her children’s meltdowns made her feel – overwhelmed, hungover. I heard the pain behind her words but it still felt like an attack on me as an autistic person.

It’s not that I don’t understand, I do. I’m an autism mum too. I was a solo mum too and now I’m an autism grandmother . I raised four neurodiverse children. One diagnosed Asperger’s, one highly gifted but with unique learning needs, one ADHD (possible autism) and one who prefers to refer to herself as a claircognizant empath, and now my daughter is raising her three neurodiverse children upstairs from me – I hear what goes down. it is tiring and lonely and you do feel unsupported at judged.

The thing is, I’m on the other side of the fence as well. I am an autistic. I was that child she refers to who had inexplicable meltdowns. That child who embarrassed her parents by saying something ‘rude’. Who did weird things and didn’t fit in. And I felt the weight of it in the comments made to me by adults. I remember the bewilderment of being in the wrong constantly for things I had no idea were wrong. There were times too, when I knew my mother had been talking about me to her friends because they all ganged up on me to change my behaviour.

Did any of that remove the autism out of me? Of course not, it just made me feel I was a wrong people. A failed people. and here’s the hurtful thing about all of this – children absorb the atmosphere around them like sponges suck up dirty water. No one told me to my face as a child that I was not up to scratch, but I felt it, I knew it by the reactions of adults and other children, even though I couldn’t understand why.

Sometimes, it seems to me the burden is always on the autistic person to learn how to accomodate the neurotypical world. We are the ones who get labelled as rude for not communicating in a way others expect but no one thinks to communicate with us in ways that would make our life easier and I’m still expected to talk on the phone and to run errands even though those activities cause me too much stress.

And so it is with children and meltdowns (or adults and meltdowns for that matter). If you know a certain thing is going to trigger one, why expose the child to it. They’re not doing it to be difficult, the fact the food is touching on the plate is really distressing to them or maybe they’ve been feeling that scratchy fabric or the sock seam all day and all it takes is for one little thing to overflow the sensory bucket.

These aren’t little things to an autistic person. They’re huge. But somehow the neurotypical world keeps missing the point. Even mums who love their children and want the best for them. Sometimes as the nuerotypical you have to bend. You need to change – yourself, the environment, the way you do things … the way you dish up the food on the plate. Because that is the loving and kind thing to do at the end of the day.

Neurotypical children have meltdowns too. Maybe not as often or severe, but they do happen. Would you write about your neurotypical child in the same was as your autistic one?

As a neurotypical parent, partner, sibling, friend or work colleague are you allowed to feel overwhelmed, sad, frustrated or fatigued? Of course you are. Are you allowed to vent or find an understanding shoulder to cry on? Absolutely. Because, believe me, we know how difficult we can be to live with at times. But don’t lose sight of the wonderful aspects of our neurology and always be willing to accomodate our differences and find a way for us to navigate this world easier.

A friend of mine challenged me the other day with the words, ‘you’re always putting yourself down.’ My reply was, ‘do I?’. Which led to an interesting, but intense conversation about how often I do, indeed, do this. This was a revelation to me as I haven’t thought of myself as having low self esteem for many years. But she was right. I do put myself down. All the time. With subtle but unmistakable words.

Content warning: autistic meltdown

It has taken me several days of thinking about this to unearth the root reasons why I do it, because as I said, I don’t think of myself as suffering from low self esteem. I know I have many unique talents and I have a lot to offer others in terms of loyalty and loving-kindness, but the more I thought about it, the more I realised all of that positivity was floating on a vast subterranean sea of not good enough.

I just want to point out, I really like myself. As I mentioned I have a great many skills and talents and I’m a good person who always does her best. But here’s the rub. Like all of us, sometimes my best isn’t good enough. I don’t mean in the way that we can all be doing something where our weaknesses out weigh our strengths. I mean in the way in which I operate in the world in a day to day manner.

Now that I know I’m autistic, that throws a whole new light on the subject but it has also pinpointed how much support I really need and how much energy I expend to try and maintain my peopling skills – not always successfully. So no wonder if over the decades of going undiagnosed I picked up a skewed belief about myself.

I have been able to trace all of this back to one defining moment. The year of 1971. January to be precise. I was nine about to turn 10 a few months later. My family and I were on our annual camping holiday. That year we camped in the far north at Tauranga Bay near Kaeo.

Earlier Cyclone Rosie had rampaged through the region and washed out the footbridge that crossed the lagoon from where we camped to the main beach. A replacement had been cobbled together from 10 gallon drums and planks of wood. It was a very sturdy in spite of its higgledy piggledy appearance.

That summer was the first time I realised other children could manage things I couldn’t. I watched them stepping around the rock pools nonchalantly while I slunk over them on my hands and knees as my vestibular sensory process went haywire. As all of these kids were younger than me, I felt I should have been able to walk over the rocks with the same confidence and I didn’t understand why I couldn’t.

Then came the inevitable day when the entire camp was going from our campsite to the other side of the lagoon. Everyone filed across without incident. Until it was my turn. Actually, it was my turn earlier on, but I couldn’t overcome my terror at having to climb the planks of wood up to the bridge so I stood by and watched until only me and Dad remained.

I managed to inch my way up onto the bridge with Dad’s coaching,but once up there my vestibular sensing overwhelmed me and I couldn’t stand up. I couldn’t move. I was terrified. I couldn’t even crawl forward because I felt as though I was going to fall off the earth.

Dad did and said everything he possibly could to encourage me to move, but nothing worked. The others had long since disappeared into the sand dunes and it was only him and me, stuck on the bridge. At that stage I couldn’t even go back. I was just too terrified.

At some stage I started crying. Dad coaxed, I cried. He urged, I cried. He scolded, I cried even harder. Eventually the only way he could see for us to move from the spot was for him to hoist me up from under my arm and lift me across the bridge. He accomplished this with me hanging like a dead weight, my feet tucked up (because I was afraid to touch the bridge), screaming in terror. To say we were both exhausted by the time we reached the other side is vastly understating the effect of the incident.

From that point on that was pretty much the pattern of my life. Well meaning people dragging me through difficult and challenging situations with me screaming in terror – literally or figuratively.

From that point on I took to heart the many comments flung my way in frustration- ‘ you’re 16 years old, you should know how to do this by now’. ‘ You’ve been working here for 3 months, you should have the hang of this by now’. ‘You’re in your 30s, how can you not get this?’ And my personal not-favourite, ‘ how can you be so stupid?’

The thing is, you can’t hear comments like that on a regular basis and not begin to see yourself as not good enough, especially if the effort you have put in has been so huge. If your very best effort is received with frustration and unkindness it’s hard to maintain a positive belief about yourself. Over time, I did what most autistic people do and started to pretend I wasn’t drowning, I was waving (sorry Stevie Smith).

Yes, I can be hard going and my challenges may mean others have to make more of an effort and offer me support or compromises so I can operate to my full potential but the effort shouldn’t be all on my side. And to be received with kindness and understanding makes the world of difference.

It’s been difficult to examine this subject. I believed I’d done good work on myself on repairing my psyche over the years. To be honest, I feel somewhat raw. I’m not totally sure of what my next steps should be. That subterranean sea seems very vast and deep and dark at present. Happily, I have a few wayfarers who have pushed out into that sea in their own little vessels and they’re holding out their beacons and encouraging me to take the journey across this sea to the other side. With their love and support I know I can do it.

P.S. I learned to walk that bridge that summer. With confidence, in my own time and that’s a lesson in itself.

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.