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

Managing the Toddler Stage

When people see you struggling with a heavy load, they don’t ask if you’re doing an awesome job or exceeding all your expectations, or if carrying heavy loads comes naturally to you – they say, ‘Can you manage?’

I think there’s a lesson there for all of us.

As a dad, and an autistic dad at that, I want to be the best parent on the planet – guide, teacher, confidante, protector, therapist, playmate, master and friend. I want to be friendly, understanding, patient, relaxed, calm, tolerant, respected and in control. I’m pretty sure that’s normal – no parent thinks to themselves, ‘Damn I wish I was worse at this than I am.’ But where I possibly differ from many is my rigid, black and white, all-or-nothing approach to the subject.

You see, to my way of thinking, if I’m not the best dad in the world, then I must be the worst; if I’m not excelling, then I’m failing; if I’m not winning then I’m most definitely losing. My benchmarks, my expectations and my standards are set so high you need oxygen and ice axes to reach them. This is unrealistic, and I know that, but it doesn’t stop me striving for greatness.

Up to now, this hasn’t been much of a problem. There have been trials and hardships, sure, but every step of the way I’ve overcome them. A bit of perseverance here, some tender loving care there – all it required was patience, endurance and a sense of humour. Simple.

Not so now that she’s hitting two. This terrible toddler stage is something else entirely.

Everything that took minutes before now takes hours. Everything that once was easy is now like quantum mechanics. And everything she used to do willingly has become a clash of nuclear powers that leaves only devastation in its wake.

Bedtime, for example. I used to put her down, read her a story, and that would be that – maybe I’d have to stick her back under the covers a couple of times overnight, but nothing more than that.

Now it’s like carrying a hissing, spitting baby tiger up the stairs, trying to avoid getting your eyes scratched out while enduring a barrage of feral, bestial roars that befuddle your senses and threaten to burst your eardrums. You put her down in bed, and she kicks off the covers and is at the bedroom door before you can escape. So you fight to lie her back down, and you reason, threaten, beg, cajole and finally bribe her with a story until she’s finally quiet and allows you to leave.

Three seconds after you close it, the door flies open and she hangs over the stairgate screaming blue bloody murder at you, as though the sky is falling down and you’re the one to blame. You hide in your bedroom, wait a minute and then pick her up, against her struggles, put her in bed, against her screams, throw the covers over her and race to the door.

And then the whole thing repeats.

It’s like being trapped in Tartarus with a cruel and unusual punishment picked out exclusively for you. Two minutes, three minutes, four minutes, putting her back in bed each time only to have her wrench open the door behind you and claw maniacally at the bars. Five minutes, six, seven. The screams descend into choking splutters, snorts, grunts, growls, a demon in your midst.

Until that wonderful, horrible moment, hours later, that she’s all cried out and sits on the floor like a dejected prisoner, rattling her dummy against the bars of the stairgate locking her in her room. And you sink to the floor yourself and you slither across the carpet to the stairs, lowering yourself inch by inch, praying they don’t creak because at the slightest sound she’ll start up again.

And you slink away and fall on the sofa, and you feel like bursting into tears because you’re battered and bruised, it’s all so hard and you can’t take it anymore.

And then she starts screaming again.

Unbelievably, the days can be worse. For the past three days, my home has been a war zone. The house is a mess, the floor covered with toys, and I decided that enough is enough. I told her she couldn’t get out any more toys, or watch Peppa Pig, until she had put her wooden blocks away. Two-and-a-half hours later, having screamed, cried, shouted, attacked me, laughed, giggled, batted her eyelids, hugged me, pleaded with me, thrown herself into the walls, thrown the blocks, hit me with her doll and overturned half of the furniture, she put the blocks away.

Did I feel jubilant, triumphant, victorious? Hell no. I felt emotionally raw from the hours of abuse, fighting to stay calm as she pressed every button and tested every boundary. I am the mountain worn away by the sea. But I consoled myself that the next time, it would be easier.

Yesterday, I told her to put away her wooden blocks before we went to the park. Three hours later, on the verge of screaming and crying myself, she put her blocks away. I won. At the cost of my soul and my sanity.

Today, to be fair, it only took one hour. But who knows how long it’ll take tomorrow?

I’ve never really understood the idea of picking your battles – I’ve always been of the opinion that if a principle is at stake then you attack it wherever you find it – but I’m discovering that flexibility in parenting a toddler is a must. After hours of fighting over the wooden blocks, when she started taking the DVDs out of their cases and putting them back in the wrong ones, you know what I did?

I pretended I didn’t see.

I’ve drawn a line in the sand, nailed my colours to the mast – the wooden blocks are the issue on which I hang my hat. If I can master this one thing, then I’ll deal with everything else, but I can’t do it all at once and I don’t have the energy or the emotional resilience right now to be master of all things.

Because the truth is, while I might want to be good at every aspect of parenting, to excel and overcome and be the best damned parent in the world, I’ve realised that in order to survive raising a toddler you have to lower your standards, relax your ideals and temper your expectations, or you’ll go crazy.

And that’s okay. Like the man with the heavy load, nobody is asking if I’m excelling – they’re asking if I can manage. And yes, I can.

That’s the lesson I take from this week – I might might want to conquer Everest, but setting my sights on Kilimanjaro as a more realistic alternative doesn’t make me a failure as a parent, does it?

Does it?

 

My Endearitating Toddler

My daughter has just reached a milestone of cognitive development – she has named a toy!

I’d like to say this is a proud moment, especially considering I never named any of my toys growing up, but in all honesty I’m not really loving what she’s called it.

‘Oh, what a lovely doll,’ people say, smiling at her. ‘Does she have a name?’

My daughter beams right back at them and replies, in her angelic voice, as though butter wouldn’t melt, ‘Chewbutts.’

‘Oh,’ they tend to reply. ‘Chewbutts?’

‘No,’ replies my daughter, and holds up her index finger like a teacher correcting a pupil’s pronunciation. ‘Chew. Butts.’

‘Well that’s an interesting name,’ they generally say. And then they give you that look, the one that is somehow sympathetic and supportive while simultaneously questioning your parenting ability and your fitness to reproduce.

This seems to be our lot in life at the moment. My daughter mastered her first complete sentence the other day, copying something from one of her toys: ‘I love cookies.’ But she doesn’t say cookies. She thinks she’s saying cookies, but she’s not.

She’s saying, ‘I love titties.’

She loves dropping it into conversation whenever and wherever she can. Particularly when you’re around judgemental strangers at the supermarket.

‘I love titties.’

‘Cookies.’

‘Titties.’

‘Cookies!’

I’ve created a word to describe this phenomenon – well, I’ve slammed together two pre-existing words, so it’s not that impressive:

Endearitating, adj. – those utterly adorable behaviours you cherish and seek to encourage that simultaneously drive you up the freaking wall.

Words are a real problem at the moment. I’m daddy, which is pretty obvious and straightforward. Nana is dada, which is a little more confusing. And dad means a multitude of things. So a typical conversation goes like this:

‘Daddy.’

‘Yes Izzie?’

‘Dad.’

‘Yes?’

‘Dad.’

‘What is it?’

‘Daddy?’

‘What!?’

‘Dad!’

‘What!? For the love of God, what do you want!?’

‘Dad! Dad!’

And then I realise she’s seen a cat out of the window – a dad. And she’s saying, daddy, look at dat, it’s a cat.

Those are the easy conversations – the ones with an object where she’ll shut up once you’ve acknowledged it. Harder still are the times she really is saying daddy and has no idea what she wants – but she’s damned sure she’s going to make you suffer until she gets it.

‘Daddy?’

‘Yes, darling?’

‘Daddy?’

‘Yes?’

‘Daddy?’

‘What do you want?’

‘Daddy?’

‘Yes?’

‘Daddy?’

‘I’m not going to keep doing this.’

‘Daddy? Daddy? Daddy! Dadd-deeee! DADD-DEEEE!’

‘What!?’

‘…daddy?’

She’s also reached that point where she cares deeply about other people, something that’s beautiful, and commendable, and gosh-darned annoying.

‘Where’s dada?’

‘Nana’s in France.’

‘Oh. And poppa?’

‘He’s with nana.’

‘And gry-ee?’

‘Granny’s also in France.’

‘George?’

‘He’s in France with granny.’

‘Oh. Dada?’

‘I just told you – she’s in France.’

‘And poppa?’

‘In France, with nana.’

‘Gry-ee?’

‘Like I said, granny’s in France, with George, before you ask.’

‘Oh. And dada?’

‘France! With poppa.’

‘And Gry-ee?’

‘She’s in France! With George, in France!’

‘Oh. And dada?’

This conversation occurs at least ten times a day. If we fail to answer, it’s a case of ‘Dada? Dada? Daddy, where’s dada? Dada? Daddy? Dada! Where’s dada? Where’s dada!’

And between these conversations, she picks up the TV controller, a wooden block, your watch, and talks into it as a phone. ‘Dada? Poppa?’ Then she hands it to you and says, ‘Dada, daddy. Daddy, dada.’ And you find yourself talking to your mum through your own shoe.

My sanity is hanging by a thread.

Rather adorably, she’s very concerned about our welfare, too. Rather annoyingly, she won’t let up. If you finish your breakfast before her, which is every day, she says:

‘Daddy, more.’

‘No, I’m fine thanks, I’ve finished.’

‘Daddy, more.’

‘No, I’ve finished.’

‘More, daddy.’

‘No more, I’ve finished.’

‘Daddy, more.’

‘Can you please just leave me alone?’

‘Yes. More daddy, daddy more. Daddy? More?’

There is also an obsession with making sure our toiletry habits are healthy and regular.

‘Daddy wee wee?’

‘No, daddy doesn’t need to wee wee.’

‘Daddy poo poo?’

‘Nope, I’m good, ta.’

‘Wee wee poo poo, daddy.’

‘No, I don’t need to.’

‘Daddy wee wee.’

‘No.’

‘Daddy poo poo.’

‘Go bother your mother.’

This same concern occurs if you happen to close your eyes for five seconds.

‘Daddy, tay?’

‘I’m okay, sweetie.’

‘Daddy, tay?’

‘Yes, I’m okay.’

And if, God-forbid, you lie back on the sofa and put your feet up, you’re met with, ‘Daddy, tay?’

‘Yes, I’m okay.’

‘Tup, daddy.’

‘Just give me thirty seconds to myself.’

‘Daddy, tup. Tup, daddy.’

And then she’ll climb onto my chest and start pulling at my eyelids to make sure I’m okay and I’m going to get up.

She’s also reached that important stage where she discovers the concept of ownership and has to decide what belongs to whom.

‘Daddy car.’

‘Yes, that’s my car.’

‘Mummy car.’

‘Yes, that’s mummy’s car.’

‘Daddy car.’

‘Uh-huh, that’s my car.’

‘Mummy car.’

‘Are we really doing this again?’

But at least that’s preferable to her notion that almost everything else belongs to her. Mine, mine, mine is a constant refrain in our house.

And she doesn’t turn two until next week. I’m not sure how much more of this I can take.

But you can’t get mad at her, even though you want to. She’s not doing it on purpose. At least, I hope she isn’t.

She truly is the most endearitating person I’ve ever met.

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!

Parents with Autism

I have mentioned before the overwhelming focus on children in the literature on autism, and the corresponding lack of study on adults with the condition. Indeed, researchers know next to nothing about autism and sex, and autistic parents, which seems odd given that one often leads to the other and the consequences can be profound and life-long.

Studying the issue of parents with autism would be helpful in two major respects. First, it would ensure that autistic parents received appropriate guidance and support for the demands of parenting, which, let’s face it, is difficult whether you are on the spectrum or not. Secondly, it might help to normalize the notion of autistic parents and remove much of the stigma surrounding this section of the community.

If you go online, much of what is written about autistic parents is by adult children of these same parents, and almost universally the experience seems to have been less than positive. Some say allowing autistic parents to raise neurotypical children is a form of abuse, and others that autism constitutes a ‘parenting disability’. There are even sites that claim autistic parents inevitably raise emotionally and psychologically damaged children. As an autistic parent, with an autistic wife, and raising an apparently neurotypical daughter, all I can say is: ouch.

On the other hand, I neither agree with nor believe any of these statements. For one thing, many of these parents haven’t received a diagnosis of autism by any other authority than their children, who might not necessarily be able to disentangle autism from other conditions such as narcissism, avoidant personality disorder, OCD, and just being a plain bad parent; and for another, people who have had an unhappy childhood and a strained relationship with their (autistic) parents are far more likely to write a blog about it than people who had a happy childhood and good relationship. Thus the picture is skewed away from reality because of the very lack of objective input from academic researchers mentioned above.

It’s also important to note that these apparently awful autistic parents had not received a diagnosis and therefore did not know they were autistic – and to me, knowing is everything. If you know you have autism, you know to work on certain areas in which you’re weak; you know to regulate your behaviour in order to meet the needs of your child; and you know to get help and advice from others. Autism is therefore no barrier to being an effective parent.

My belief is that your parenting ability comes down to you as an individual. There are some fantastic autistic parents out there and some terrible neurotypical parents, just as there are terrible autistic parents and fantastic neurotypical parents. The point is, a diagnosis or otherwise doesn’t dictate an individual’s ability to parent or the long-term outcomes for their child.

I was lucky enough to be interviewed by Spectrum Magazine for an article on parents with autism that discusses these very issues. It is well worth a read, and contains some beautiful photos of my wife and daughter, and unfortunately some of me as well. Here’s hoping that these holes in the story of autism will soon be filled.

Romantic and Parental Love: an Aspie’s Perspective

When people say ‘I love you,’ what do they really mean?

As an Aspie, love has always been a confusing concept to me. When I was younger I took my cue from movies and TV, believing in a fantasy, fairy tale form of love that moved mountains, crossed oceans, and transcended space and time. People in love never argued, never had to compromise, and never had to say sorry, for love is such that they could communicate without words. It was a force so powerful it could even conquer death. Thanks Hollywood!

For some reason, the divorced and unhappily married people around me didn’t contradict my belief in a happily ever after. Indeed, they were an object lesson not to settle, to keep holding out for ‘the one’ – that person who would make everything better. I was half a person, broken and drowning, and she was half a person, broken and drowning, and together we would become a single whole, entire and swimming. We’d live in and through and for each other. Limerence, I think that’s called. Looking-for-a-miracle-cure-for-my-depression would be more accurate.

As I got older, I started to notice there were a few holes in this idea of love. For one thing, there are over seven billion people on this planet, so if there’s only one person out there for you, the odds of you finding them are too small to be worth calculating – unless you also believe in magic, and destiny, and unicorns, which I don’t. For another, from a psychological perspective, the very notion of being incomplete and needing another person to fulfil you puts you in a rather vulnerable position. Not to mention that it’s an incredibly disrespectful way of viewing your partner – only half a person without you. What rot.

I then redesigned my concept of love. It was not an emotion anymore, not a feeling, but a psychological compulsion programmed into you by biology, society and the greetings card industry. You got together with someone not to complete one another, not to make you happy but to enhance your own happiness. It was about two wholes coming together and remaining two wholes. Think two islands joined by a causeway that gets covered every high tide.

The emotional aspect of a relationship – the butterflies, the happiness, and all the other intense experiences of the honeymoon period – is simply a mislabelling of nervousness, lust and the fulfilment of social expectation. And once that exciting time fades, you’re left with a need for the other person that has developed through shared activities and the difficulty of disentangling your lives and CD collections. Not a particularly romantic idea, perhaps, but certainly more realistic.

As time went on, I decided that denying an emotional aspect to love didn’t entirely fit the reality I saw around me or that I experienced myself. And when you’re in a relationship, there is an undeniable merging of two people, a coming together of hopes and dreams, sacrifice and support, until you struggle to distinguish where you end and the other person begins. Clearly, I needed to come up with a new definition.

Love is partly a feeling, partly a psychological compulsion, partly the result of biology, partly a fulfilment of a social need, and partly an idea you consciously engage with, negotiate and decide upon yourself. Think two islands linked by a bridge, a causeway, a swamp, a lagoon, and a tangle of vegetation, all of which change depending on the height of the tide and the time of the year.

How does this work in practice? It means that my wife and I are bound together by a variety of things, some deliberate, some accidental, some beyond ourselves, some of which we’re unaware of; it means we are sometimes close, sometimes more distant, that sometimes it’s easy to connect and sometimes bloody difficult; and that ultimately, though we could sever our ties or seek other people to love, we have chosen to be together. This is what it means when we say, ‘I love you.’

Or at least, that’s what it means when we’re talking about romantic love.

Parental love is something entirely different.

There is no choice when it comes to parental love. You don’t consciously create ties with your child, psychoanalyse why you love them, adapt the form it takes to suit both of you – it just is, with an intensity beyond anything else.

And it asks no reciprocity. You’re not even sure it’s a two-way thing, and it wouldn’t really matter anyway, because you’d go on loving them regardless. You’d suffer any indignity so they don’t have to, fight the world if it was necessary, and lay down your life in a heartbeat. Autistic or otherwise, I think most parents would feel the same way.

Where autistic parents can differ is in our expression of that love. The children of autistic parents often grow up feeling unloved because, as we know we love them, we assume they know too and therefore don’t feel the need or even understand we have to tell them. Which is why, since birth, I have showered my daughter with hugs and kisses and smiles, even when they don’t come naturally to me, so she grows up feeling loved.

But it struck me the other day that there is one thing I’ve not done in the twenty-two months she’s been with us: I’ve never said to her, ‘I love you.’ It just never occurred to me to say it. I don’t know if that’s normal, I don’t know if it’s odd, but from now on I’m going to tell her every day – just so that she knows.

Even though it doesn’t come naturally to me.

Children with autism become adults with autism

There is a deductive argument so straightforward and sound that all intelligent, educated, free-thinking people should be able to grasp it with ease. It’s so patently obvious that I shouldn’t even need to write it down because we all just know it to be true. I will, however, because it is necessary for what follows.

  1. Autism is incurable.
  2. Children grow up.
  3. Therefore, children with autism become adults with autism.

I mean, it couldn’t get much simpler than that. You’d have to be a philosophical contortionist to somehow argue against it.

And yet, looking at the way that autism is treated, represented, categorised, theorised and mythologised, you’d be forgiven for thinking autism is a childhood disorder that disappears on your eighteenth birthday. You step up to your birthday cake a person with autism, and as you blow out the candles, lo and behold, you’re neurotypical! Hallelujah!

It strikes me as bizarre that even though we all know that children with autism become adults with autism, the latter group is virtually invisible. From the services available, to funding, to treatment, to research, to specialists, to TV programmes, to books, to websites, to expertise, it’s all heavily skewed towards children with the condition. Much of it simply vanishes as soon as a person reaches their majority, as though nobody realised that these children with needs would one day become adults with those same needs that are now, sadly, unsupported.

Go look at 100 books on autism, you’ll find that around 99 of them have children or childlike images on the cover, and contain chapters dealing with school and adolescence and how you can help your child make friends. Research the statistics on autism and you’ll find statements like, ‘1 in 88 children has autism’, when surely they mean 1 in 88 people has autism? Then try and find academic studies on autism and sex or on parents with autism and you’ll find it pretty damned hard, because the experts don’t seem to realise that autism extends beyond the first eighteen years.

When, as an adult, I spent a decade seeing psychiatrists and psychologists under the Mental Health Team, not one of them ever brought up the possibility I might have autism. When I asked to be seen by an autism specialist, I discovered there was one person qualified to diagnose adults in the whole of Dorset – a county with a population of almost 800,000 people – and she could only devote one day a week to this. When I was finally diagnosed with autism at 28 (and immediately discharged by the Mental Health Team because ‘autism isn’t a mental illness’), I went to the Learning Disabilities Team, to be told that all of their support services were for children with autism, and they had neither the funding nor the expertise to cater to adults. So that was that.

But the greatest irony, and to me the greatest illustration of this very real problem, is the book I had published last month. Now, I am incredibly grateful that it has been published and I’m gratified to learn it is helping people, but I wrote it specifically to address a shortfall in the autism literature, namely, people diagnosed with autism as adults. The book is entitled An Adult With an Autism Diagnosis. It is written for adults with autism, about adults with autism by an adult with autism. So where does it appear on Amazon?

Here’s the directory information: Health, Family & Lifestyle > Pregnancy & Childcare > Children’s Health & Nutrition.

Ever get the feeling you don’t exist?