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.

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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!

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?