Speaking at an Autism Conference

As part of my role as a guest blogger for Autism Wessex, the charity that provides my support, I have written a blog about speaking at the Inservice Autisme in Belgium last month alongside internationally renowned opera singer Sophia Grech and bestselling author Luke Jackson (Freaks, Geeks and Asperger’s Syndrome).

It describes what people on the spectrum can achieve if we don’t let our limitations define us, and what a positive experience it was.

If you’d like to check it out, please follow this link: Gillan Drew Wessex Blog.

Thanks for reading!

Advertisements

How my toddler made me cry

My two-year-old daughter made me cry the other night.

It came as a bit of a surprise, because I’m not really that emotional a person. Over the years I’ve built up a thick skin – it’s the only way to survive being a square peg in a world of round holes. My moods tend to vary between melancholy, discontentment and ennui, so I rarely reach the extremes of feeling that lead to tears, good or bad. Funerals? Nothing. Weddings? Nothing. The birth of my kids? Meh.

But then, there is a chink in my armour. Toy Story 3 made me weep in the cinema, My Girl just kills me, and who doesn’t cry at Marley & Me (besides cat lovers)? I can’t walk past a child’s gravestone without welling up, and last year I even cried at a book, Karen Joy Fowler’s We Are All Completely Beside Ourselves, in a scene where a chimpanzee begs to be allowed to go home. All of which goes to show, give me the bittersweet juxtaposition of innocence and sorrow, and you can pierce right to the heart of me.

I first noticed this weakness about twenty years ago, at Land’s End in Cornwall. A little boy was running with his brand new toy sword from the gift shop when he tripped and fell and – SNAP! – the blade broke at the hilt. The look on that boy’s face – the dawning realisation of what had happened, the switch from innocent joy to infinite sorrow as life’s hard truths hit home, and then the tears of impotent despair at the discovery that some things once broken cannot be fixed – it broke my heart.

I mean, sure, it was just a plastic sword costing a couple of quid and his parents could have bought him another one in a heartbeat – hardly a life-or-death experience. But that boy’s face haunted me for weeks after, because in the innocent, uncontrolled emotional state of a child, unable to weigh up comparative value or process cause, effect and consequence, and living solely in the moment, it is life-or-death. Children and animals, their simplicity of thought and emotion, their purity – when they suffer, when they’re sad, when they’re in pain and when they die, it cuts through every barrier I put up to protect myself.

Unfortunately, my toddler is right at that point in her social and emotional development where innocence and sorrow come into contact several times a day.

The evening she made me cry, I picked her up from nursery as usual. It’s always nigh identical to that scene in The Railway Children – she sees me, stops stock still in awe, and then she shouts, ‘Daddy, it’s my daddy!’ and runs towards me, her face filled with elation, leaving me just enough time to drop to one knee before she slams into me and throws her arms around me. So excited to show me what she’s been doing, so proud to show me off to the ladies at nursery – ‘My daddy,’ she says, ‘This my daddy.’

She’s the last to be picked up, after dark, so for half an hour she gets to hang with the grown-ups. I know it makes her feel special. She gets such a look of well-being on her little face as she puts on her school bag like a big girl, waves to the ladies all cocky because she’s heading home to mummy and her little sister. This night was no different but for one thing.

She tripped as she stepped over the threshold, stumbled down the wheelchair ramp and face-planted into the mud.

I stood her up, her hands, coat and face black with dirt. The women from the nursery appeared in the doorway and in the light spilling out past them I saw my little girl’s face – the shock giving way to embarrassment and humiliation as she fought back the tears, struggling to keep control. I told her it’s okay and she’s very brave, but it was all too much and suddenly she was wailing and burying her face in my side so nobody could see her. Ultimate joy to ultimate misery in under ten seconds, her special, sacred moment destroyed. Broke my heart.

But that wasn’t what made me cry.

On the way home, to distract her from her misery, I asked her who had been there today. Turns out it was Tilly, Hugo, Sebastian, Rufus (yes, I know – we’re only a Tarquin away from winning Pretentious-name Bingo), and a new one for me – Jasper.

‘Who’s Jasper?’ I asked.

‘My best friend,’ she replied. Too cute!

Then I asked her what she’d been up to. ‘Me sing Twinkle, Twinkle with my friends.’ Oh my gosh, the sweetest thing ever. But it still didn’t make me cry. No, that came after dinner when I was bathing her.

She was sticking the foam letters to the side of the tub – ‘This mummy,’ she’d say, and ‘This Granny,’ and ‘This Poppa.’ Then she put three together, pointed at the middle one, and said, ‘This daddy.’

‘Who’s this, then?’ I asked, pointing at the figure beside me.

‘This daddy’s friend,’ she replied, and pointed to the other; ‘and this daddy’s friend.’ And then she put another one beside them and said, ‘And this daddy’s best friend.’

And that’s when I cried.

As a master at acting ‘normal’, I hid it well. This is particularly important because my toddler has become very sensitive to other people’s feelings. She’s always asking if mummy’s sad, or if daddy’s sad, and the other night she woke up sobbing because she’d had a dream in which mummy was very sad. So I wiped my eyes, endured that prickly feeling at the top of my nose, and got on with it.

But why did I cry? The juxtaposition of innocence and sorrow.

As somebody with autism, friendship is something I always desperately wanted but was never able to have. I struggle to understand or connect with other people. When someone wants to be my friend, I become paranoid and push them away. When I want someone to be my friend, I approach it so cautiously I miss the opportunity. I don’t know how to make, keep and manage friendships, and I only have the mental energy or focus to sustain one friend or partner at a time. As I’m married, this means I don’t have the social resources to have any friends – no close ones anyway. It’s the way I’m built. It’s one of those things.

But that doesn’t make it any less painful, and it doesn’t mean I’m not desperately lonely.

My daughter has already realised the importance of friendship. Watching her making friends is a wonderful relief, because she is not like me. A bittersweet relief, as one day she’ll learn that daddy doesn’t have any friends, and she won’t understand why, and she’ll be sad, because even though I won’t show it, she’ll know that I’m sad too. Because friendship is important regardless of who you are.

Where do innocence and sorrow factor into this? Her innocence; my sorrow.

That’s how my toddler made me cry.

Speaking for Others with Autism

As someone who puts himself in the public eye for a cause, especially on the internet, I’m aware that this makes me a target for criticism. Mostly it’s to do with my opinion on MMR not causing autism (because it doesn’t), my belief that modern, science-based medicine is better than snake oil and superstition (because it is better), and my insistence that people with autism can and do make good parents (because we can and do – although not all of us). These criticisms I can easily brush aside.

Not all criticisms can or should be dismissed out of hand, however. There’s a pernicious idea among the younger generations (and Taylor Swift) that any criticism is trolling, and those who do it are simply ‘haters’ and bullies, which is a great way of avoiding personal responsibility and adopting the mantle of victimhood, but isn’t an enlightened way of viewing people whose opinions differ from your own. So I tend to give my critics the benefit of the doubt – that the criticism was sincerely meant, even though I might disagree with it – and I consider whether there is any merit to it, since this is how we grow as people.

My latest criticism has got me thinking, for despite being worded rather rudely and making some outlandish assumptions, it asks a pertinent question: by what right do I presume to speak for others on the autism spectrum?

I have to first point out that, while I have been told I am an ‘ambassador’ for the autism community, speaking for those who can’t speak for themselves, I have never actually claimed this myself. I recognise, however, that by putting myself out there as a speaker, author and blogger, my words and behaviours reflect upon people’s perceptions of autism, and this is not something that I take lightly. Indeed, I put a great deal of effort into getting it right, especially since I’m currently in a position to influence opinion.

On Wednesday, for example, at an autism conference in Belgium, I spoke to two-hundred delegates about what it’s like to live with autism and how I manage to cope. Also on the bill at Inservice Autisme 2017, in the small village of Oostmalle outside Antwerp, were two other Brits with autism: internationally-renowned opera singer Sophia Grech, and bestselling author of Freaks, Geeks and Asperger’s Syndrome Luke Jackson. So, what right do I have to speak at such an event?

My answer is: I have every right. I talk about what affects me and other people I have met with autism, what has helped me to cope and what has helped others. I point out some of the issues you might face living on the autism spectrum and how these might be overcome. As you don’t cease to be an individual when you’re diagnosed, I am up front about the fact that the things I say will apply to some people more than others, and while some coping strategies might work, they are certainly not for everyone. The important thing is to make sense of your own experience and find out what works for you.

I don’t think there’s anything particularly offensive about that.

I have also been told I shouldn’t speak for others with autism because I have a wife and children, a book and a blog, and I have worked in the past – that my achievement of various life goals makes me ‘atypical’ (i.e. too successful) and thus invalidates my experiences of autism. Inherent in this accusation is a very negative view of people on the autism spectrum, as though to qualify as autistic you must necessarily be unfulfilled, downtrodden and miserable, and this is an opinion that simply does not ring true for me.

I have met hundreds of people on the autism spectrum, and I continue to be amazed by their diversity. In just four months of public speaking I’ve spoken to many Aspies with wives and children, jobs and homes. After every speech I have given, people on the spectrum have come up to me and told me I could have been describing their lives and that what I said really resonated with them. To say that I am ‘atypical’ and cannot relate to others on the spectrum is therefore simply wrong.

It has also been assumed that, because I take a positive, hopeful view of the prospects for those of us on the spectrum, I shouldn’t speak for those who don’t have it as ‘easy’ as me, or the same ‘advantages’, as though I lead a blessed like free of strife and woe. I don’t think anything could be further from the truth. I could offer to show all my self-harming scars from years of struggle, but instead I’ll say what it took to attend the autism conference to show how ‘easy’ it was.

As a stay-at-home dad/unemployed guy with a two-year-old, a seven-week-old and an autistic wife who can’t be left alone with the kids for more than a couple of hours, attending the conference was tough. First, my wife was very abusive when she first found out about it in April because she was scared of me going away and her not being able to cope; despite organising for people to sit with her while I was away, and for her to stay at her mum’s, she remained hostile about it right up until the time I left, telling me I would likely be killed by terrorists in Belgium and that I didn’t love my family, etc., etc. This is what she does when she is feeling vulnerable – she goes on the attack.

As I tried and failed to book a flight to Belgium (I found it too difficult, for while I am capable of some things, I’m incapable of many others), I sought help from my dad, who agreed to drive me. He wanted to take the Channel Tunnel, but as I’ve been on it before and found it claustrophobic, I asked for us to take the ferry because I was worried I might have a panic attack.

On the day of the journey I was up at 3am with the baby and didn’t return to sleep. I left home at seven and it took more than twelve hours of travel to reach Oostmalle. Upon arrival, I was terrified, had an upset stomach, and struggled to keep my anxieties in check.

Entering the conference centre, I was confronted by 200 Dutch people eating dinner, drinking in the bar, and milling about in a noisy, dark environment. The organisers sought me out and directed me to the ‘English Corner’ where Sophia Grech sat with Luke Jackson, two titans of the autism community. So I dug deep, swallowed down my fears, and introduced myself.

After an hour of trying to hear people over the noise and hiding behind a bottle of Coke, my father drove me to the hotel. I rang home to check on things, to find my wife sobbing, the baby screaming, and my toddler crying down the phone, ‘Mummy very sad! Mummy very sad!’ Not easy.

After my dad went to sleep, I worked on my speech, as this was the first opportunity I’d had to be in a clear headspace – or as clear as it could be.

In the morning, I was really panicking. I had to take pills for my upset stomach, struggled to breathe, and wasn’t sure if I’d be able to keep my heart inside my ribcage. As we arrived I puffed out my cheeks, blew out my breath, and flapped my hands like a baby bird trying to take flight. And then I forced it all inwards and painted on my mask, my happy, confident face, and entered the fray.

The speech went well, very well, in fact. I really felt as though I made a difference, and the feedback afterwards showed that it went down a treat. For the next few hours I hung around with Luke and Sophia, and despite my fears, they were two of the coolest, nicest, most down-to-earth people you could hope to meet, with stories and experiences and ideas very similar to my own. In fact, to find myself in such agreement with others was both a rarity and a validation of my own views on autism.

The next day, exhausted and headachy and socially hungover, dwelling on every word I’d said in my speech and worrying if I’d done justice to the wider world of autism, I got up at six to leave at seven for the twelve hour journey home, whereupon I immediately resumed my parenting and caring roles.

I mention this to show that while things might be hard, those of us with autism can achieve amazing things if we have the courage and drive to confront our problems and refuse to let them hold us back. And if people still think I don’t understand what it is to struggle, that I don’t find things difficult enough to be a ‘proper’ Aspie, and that my life is too easy to be relatable, then it says more about them, I think, than it does me.

So why do I do it, if I find it so hard? I do it because I can do it, and I genuinely want to help. My life has been so hard I want to make things easier for others, and if sharing my experiences, opinions and coping strategies can make an autistic person’s life just a little bit easier, that’s what I’m going to do, regardless of whether critics think I’m entitled to or not.

I’ll leave you with the comments of a girl in my village who also has autism. She has struggled all her life but is now doing voluntary work and trying to make something of herself. She’s quite open about the fact that she isn’t articulate enough to describe what it’s like living on the spectrum and doesn’t have the confidence to speak in front of people anyway. Here is what she wrote on my Facebook page a few weeks ago:

‘You’re amazing and you’re doing a great job for everyone else who has autism like you and me and everyone else. I’m really proud of you.’

And the other day she wrote:

‘I and everyone else with autism is going to look up to you. You change people’s lives. Congratulations.’

Am I entitled to speak for others on the autism spectrum? I’ll leave you to decide.

 

The Hidden Disability and the Hands-On Dad

I’m a pretty placid guy, I think. I take as I find, try to treat others as I’d like to be treated myself, and generally endure massive amounts of abuse before I fight back. I can be irritable, sure, and I can be a dick, but I try to make the world a better place by being in it.

All that being said, there’s one thing that drives me freaking insane: when people assume I’m somehow less of a parent because I’m a man.

Yesterday, I arrived home from nursery at around 6pm with my little girl in tow and unloaded her from the back of the car. A neighbour was out in the street and asked me how I was.

‘Knackered,’ I replied.

‘Well, if you’re knackered, imagine how your wife feels,’ she replied. ‘It’s harder for her – she’s the mother.’

Wow. Considering we’ve only ever exchanged a couple of words before, it seems awfully forward to express such derision for my physical and mental state.

Allow me to respond.

‘Well, actually, my wife has autism and a learning disability and I’m practically her carer; I can’t leave her alone with the kids more than an hour or she becomes overwhelmed; she goes to bed at 9pm and sleeps right through till morning, so until 8am, I am a single parent; and every time the baby cries, she passes her to me.

‘For every five nappies I change, she changes one; I cook four nights a week while she cooks twice, unless she decides she’s not in the mood, in which case I have to throw something together or we go hungry; I look after the dog, the cat, the chickens, the fish; I do all the driving; and if I try to nap in the afternoon, I’m told I’m selfish and don’t care about the family.

‘When the baby cries, my wife cries; when my wife cries, the toddler cries; and then the toddler tells me I’m naughty for making mummy cry. So I soothe the baby, then soothe the toddler, which soothes my wife.

‘I’m the only one who baths our toddler; I put her to bed every night, even when she’s screaming to stay up because the baby’s still awake, which is every night; I take her to nursery twice a week and pick her up; I hold her hand when she wakes crying in the night; I cuddle her because since her sister arrived she needs three times the love and reassurance; I console her when mummy’s too busy playing with her phone to pay her any attention; and I’m the only one who disciplines her, gives her stability and clear boundaries, and remains consistent in my behaviour.

‘I haven’t had a good night’s sleep in two years, while my wife gets ten hours a night; haven’t had more than a few hours in a row ‘off’, while my wife goes out several times a week; bear the full responsibility for everybody in this household; and I am not allowed to get ill, or feel tired, or have a headache, or else everything falls apart.

‘If I go out, I have to arrange for someone to come in and sit with my wife; and everywhere I go, everybody asks me how my wife is coping, and how we can make things easier for her, and whether she needs more time away from the children.

‘My life revolves around my kids, as though I’m in a bubble of childcare; I don’t have the time, energy or inclination to do any of the things I used to do; I eat all the time and am so tired I barely know the day of the week; I feel as though I’m just going through the motions; and I read a pamphlet that said these are all signs of postnatal depression in women, but, damn it, this is just normal for me.

‘And now let me tell you why I’m knackered today. Between feeding and changing the baby last night, I worked on my speech till 1am. The baby was up at two, four and six this morning, an hour each time, and then my toddler once again got up at seven. I have had three hours of sleep in snatches of 45 minutes a time, and that’s the way it’s been for a month.

‘After breakfast I took my toddler to nursery, where she spent all day because I was out this afternoon and my wife wasn’t capable of looking after them both. After making lunch, I packed everything up for my wife and drove into Bournemouth. I then set up the pushchair, loaded the baby into it, and bid my wife adieu as I headed for a hotel.

‘Upon arrival, I was seated at a table beside best-selling author Kathy Lette and her son, Holby City actor Jules Robertson, and across from comedienne Rosie Jones. I was both overwhelmed and terrified, but I hid it well.

‘After a bit of chit-chat, I got up and gave a speech to 140 local business leaders, the mayors of Poole, Bournemouth and Christchurch, an MP and a Lord, encouraging them to provide work placements for people with special educational needs. After my speech, several people approached me and told me they had been sufficiently moved by my words to offer employment to people with autism.

‘Oh, did I forget to mention that I’m autistic too? And that I’m also susceptible to depression and have been on a high dose of antidepressants for fifteen years? And that nobody seems to give a damn about whether I’m coping?

‘So, my speech over, I picked up my wife, loaded the baby and pushchair into the car, and drove home. The baby apparently hadn’t woken up at all, but she was wet as my wife hadn’t changed her. I changed her clothes and nappy and fed her, then went to pick up my toddler from nursery.

‘On the way back, I thought how exhausted I was and how desperately I needed some rest, but I knew I still had to make tea, put my toddler to bed, and then, after my wife went to bed, get up up at least three times in the night to see to the baby.

‘And then I saw you, and you asked me how I was.

‘”Knackered,” I replied.

‘”Well, if you’re knackered, imagine how your wife feels,” you replied. “It’s harder for her – she’s the mother.”

‘Now, I’m not going to tell you how offensive your assumption is that my wife works harder at parenting than me. I’m not going to harp on about how while from the outside we might look like a nice, normal family, you have no freaking idea what goes on inside. And nor am I going to roll out that old adage that to assume makes an ASS out of U and ME. No.

‘To assume makes you an ass, period. And that’s all I have to say about that.’

That’s what I could have said. Instead, I dug deep, took it on the chin, and said, ‘Yep, it’s much harder on the mum.’

Because the situation in my household is the situation in my household. It’s not ideal, sure, but I’m surviving, and I’ll be damned if I’m going to allow my neighbours to know what’s really going on, and talk about it among themselves, and judge us.

They call high-functioning autism the ‘hidden disability’, and it really is – in every way that matters.

My Life With Autism

For anybody in the Dorset area, I am doing a talk tomorrow night for DAAS (Dorset Adult Asperger’s Support) at the United Church in Dorchester (49/51 Charles Street, DT1 1EE).

The same talk was very well received in July at a similar event at Bournemouth University. Doors open at 6.45. It would be great to see some of you there.

Gillan

 

Happy Father’s Day

Happy Father’s Day to all dads, whether old or young, with big children or small, neurotypical or otherwise. Remember, anyone can be a father, but it takes work, dedication and understanding to be a dad.

I spent my first Father’s Day in NICU, the Neonatal Intensive Care Unit, my little girl in a plastic crate with a tube in her nose. I came in first thing in the morning, bleary-eyed and overwhelmed, to find a mug beside her bed that said, ‘World’s Best Daddy’, and a card from my daughter that contained her footprint in pink paint. To the paediatric nurses and prem baby charity Bliss, I have to say that it made all the difference to me that day. Thank you for your sensitivity and your kindness. Little things make all the difference.

I have written an open letter about this experience to my daughter for Autism Wessex. Feel free to have a read.

All the best, and keep up the good work!

Gillan

My Life With Autism

For anybody in the Dorset/Hampshire borders region (or further afield, I’m not fussy!), I’d like to announce that I’m talking at an event on Tuesday evening, June 6, entitled ‘My Life With Autism’.

It’s hosted by Autism Wessex at Portfield School from 7:00-9:00pm and it’s free, but as spaces are limited you need to book tickets from the following link: Get Involved.

I will be talking about my journey to diagnosis, the difficulties of growing up undiagnosed, work, parenting, and day-to-day life. Along the way I’ll provide hints and tips on living with the condition that have proved helpful in my own life. There will also be the opportunity to ask questions.

I hope to see some of you there and thanks for reading!