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.

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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.