There are many articles about parenting a child with autism, but what about parenting when you’re the autistic one?
I’ve read a couple of articles that suggested that autism couldn’t be an evolutionary step or a genetic trait, because autistic people don’t like relationships and so wouldn’t produce children.
I should probably let all the autistic mothers and fathers know. They’ve clearly been autisming wrong.
When I autism (it’s a verb, to autism: to be a bit odd, flap your hands, not engage socially and abhor all human contact) I’m definitely doing it wrong.
For one I have children. I have more than the average number of children. And here’s the true abhorrence, I like them. I like being around them. I like the way they look at the world. But most of all I like how they look at me with love and a complete lack of social expectations.
There have been compromises. Just as all parenting is compromise. There are times when I don’t wish to be touched, when I will still hold my children.
This love is unconditional.
My love for my husband is different. It’s conditional.
Some may think that sounds cold, but to me in many ways it’s the ultimate compliment.
I adore him utterly, but if I don’t wish to be touched, then I don’t hug him. That’s the main difference between parenting and relationships for me.
That’s not to say that under certain circumstances I wouldn’t hold him if he needed me. But it is one of the ways that we are not fully compatible.
When I am stressed I need less sensory input, when he is stressed he needs more. But there’s compromise there too.
My inflexibility and rule-following play a part. I have strict rules, definite boundaries, but these are explicit and only surround the important things. I like to describe it as organised chaos. Within the boundaries you have a freedom that you wouldn’t have if there were none, or if they were indefinite edges.
The boundaries are based on kindness to others and safety. What more do you need?
In some ways I am childlike. I have an impulsivity and a fascination with minor detail and patterns. I love enjoying those moments with them.
Where I fall down is the social aspects. Parents evenings are my kind of hell. They’re noisy and crowded and often don’t end up following the rules that they created, all to hear that my child is who I think they are.
Here’s where my relationship with my husband makes the world easier. When there are times of sensory overload, but situations that need me to be there, by taking his hand, letting him lead me, and shutting myself down as much as I dare, I can walk through the fire.
He gives me permission to leave. He is my safety valve. Just knowing that I am not trapped is often enough to help me cope and stay.
Where I am not needed, he happily takes on the social roles. Small talk at the school gate is specifically designed to exhaust and irritate me in equal measure.
What’s worse is that often those doing it are people I genuinely like and respect and enjoy spending time with in other scenarios. But at the school gate it’s all chatter and work and no benefit.
Long ago there was the theory of the “Refrigerator Mother”. It was she, with her cold aloofness, and unsociable and therefore unfeminine personality, that was responsible for the creation of autism in her child.
She was the causal link. And I believe it.
I believe that the refrigerator mother (and/or father) was responsible for the autism in her children. But I don’t believe that it was an environmental factor. I believe she was an autistic person, highly skilled in masking her difficulties. I believe that she passed on a genetic propensity.
I appear aloof. I appear arrogant. I’ve had people who I’ve known for years say things like, “Of course you must think you’re the best, you’re so full of yourself.”
Which from inside my head is shocking. I’m the least sure. I’m the most questioning. Everything I do is based on probabilities and indepth reasoning, everything I do is doubt. I’ve often thought how terrible I am at being human.
But they weren’t seeing me. They were seeing my poorly moulded façade. They were seeing my image of what a person is supposed to look like.
She looks cold and aloof because she cannot project emotions properly when she is stressed. She doesn’t read them well in others either.
At home I am warm and loving and I talk and laugh with my children. I remember vividly the stresses and pains of childhood. I remember the injustices, and I do my best to minimise them. I remember the stresses, and I let them have time to themselves when they need that space.
In public I become encased by societal rules, and I worry about conforming to them, and include my children in that.
I am as imperfect a parent as any. I am instinctive. I am fiercely protective. I share their pain and their joys.
As a wife I am honest, loyal and supportive. I am whimsical (although my husband would be more likely to class that as impish), I am enormously affectionate when unstressed and my home life is my joy.
I am practical. I am logical. I am artistic and creative. I am scientific and mathematical. I am a complex person. I am a person.
As I write this there is a small person asleep on my lap. There is no divide between her and me. She is held so close that I cannot tell where I end and she begins. She is comfort and warmth. I am in awe of all of them. These incredible tiny people with their incredible minds and their incredible feats of everyday genius. And I get to be with them. I get to just listen and laugh and be a part of their family. I am so honoured.
Yesterday we all lay on the trampoline in the sunshine. The whole family entwined and laughing as we undulated with the bouncing of the smallest person. A perfect moment in time.
Later there were whinges about so and so playing with my toys, and “Can I just stay up a bit longer?” and all the other less fun moments that make up a day. It would be incomplete without them.
I can’t comment on what parenting without autism must be like. My husband is neurotypical (not autistic), and he’s certainly better at dealing with change than I am. Who is the better parent isn’t really a discussion we have. We just both muddle along, doing our best and working to our strengths.
A very wise lady, not very long ago, said to me that autistic mothers (and I’m only not talking about fathers because I don’t have that experience and neither does she) are researchers by nature.
We will have read everything we can read, we will have studied every presentation of parenthood in the media, in real life, in books and on TV. We will have chosen how to parent based on knowledge and we will learn and fine tune our technique.
It’s also important to remember that just because other people don’t research everything, just because they don’t have that same need to know every aspect and angle of every detail, it doesn’t mean that they’re not interested. It doesn’t mean they don’t care just as much as we do.
What the research doesn’t cover either is instinct. With my children I have never fought against instinctive parenting. In the rest of my life I’ve shackled it, I’ve suppressed fear and stimming and all those instinctive actions that are not ‘normal’.
But with my children I am free to be instinctive. To hold them close. Even to look into their eyes. With everyone else I will look at their nose. But my children are extensions of me. No expectations. No preconceptions. No judgement. No othering. Just love.
Then they grow and they learn. They shine a light on the things you find difficult. Not by forcing you into uncomfortable scenarios, but by asking why we have the ones we have.
Ever tried to explain the ludicrous aspects of communication to a small child? Ever had to deal with the question, “Why is it sometimes okay to lie?”
Ever defined the subtle nuances of fact versus opinion? Ever navigated the stormy waters of ranking the importance of feelings over honesty?
It’s not just truth either, why is it ok to say things in certain situations and not others?
When you start to pull at the thread of societal interactions they all start to unravel. We do things because that is the way we do them.
The basic premise of all interaction should be to be kind. Is it true? Yes. Is it kind? No. Then don’t say it.
Many autistic people not only have empathy, they have a higher than average level of empathy. Yet there’s still a belief that we are unfeeling.
Just because I cannot always show you my feelings through body language and expression, it doesn’t mean I do not feel. It doesn’t mean they are not there. It just means you’ve misunderstood me.
Here are the parenting tips that I’ve found useful:-
1. Be realistic. Decide on what is actually important and have those things as your limits. Don’t stress the little stuff.
2. Laugh. Laugh a lot. As often as possible. Never at your child, but with them. The more you do it the easier it gets.
3. Parent the child in front of you. The one lesson I’ve really learned is that children are actually real life people, and a lot of who they are is intrinsic. That is to say, environment didn’t cause it. Don’t assume a girl will be sensitive and a boy tough. Don’t push a child into accepting something they can’t handle, just because their older sibling found it easy.
My older son can’t cope with any kind of Peril in TV and films. My younger daughter is a bloodthirsty monster who takes it all in her stride. Let them be scared of what they’re scared of. Let them be safe. Let them express themselves. Listen. They won’t be who you expect them to be, they’ll be themselves, and that’s far better.
4. Politeness is the sneakiest of all social skills. It’s lovely. It makes us all feel appreciated for no particular reason, and if your child uses it then they will have an easier time of it. Repetition is the way to go. Not in that annoying, pointed, “say THANK you”, but in a cheery echo every time you hand them something, or they give you something. And don’t ever forget to thank them back. Why should they do it if you don’t?
5. Children are the ultimate acceptors. You’re teaching them how to treat people. Above all, teach them to be kind. Teach them that everyone is equal. Teach them that we’re all different, and we’re all the same. Now is the time! My children have always seen me stim. They’re curious. I explain it feels nice and makes me feel soothed.
6. Don’t take it personally. This is probably the hardest one. When someone you love lashes out at you, it’s easy to assume that their purpose was to hurt you. Look for another cause. Unhappiness and aggression is often a communication issue. Help them find another way. You don’t have to tolerate the action, but you do need to find the trigger if you want it to change.
7. When you make your plan for the day, as I do every morning, write in at least fifteen minutes of “unforeseen circumstances”. It helps with the stress when your child suddenly tells you that they forgot to mention that they need to take in something extra for school today. It’s already written into your plan. It’s a part of your day. You don’t have to change anything.
8. Don’t do it if you don’t want to. There are social obligations that come with it. There’s nothing wrong with not having children. It’s another societal expectation that makes no logical sense. There’s no parent alive who doesn’t sometimes feel a pang when they see that their childless-couple friends are off on their 75th foreign holiday this year, whilst you’re listening to some good quality squabbling at home. Do what’s best for you. Not what the world thinks you should be doing.
9. Talk. Not just to your children but to the other adults in their lives, be they your husband, wife, grandparent, friend, whoever. Talk and be honest about the things you find difficult.
One thing autistic people do is to assume, without basis, that other people share our point of view.
Don’t assume that just because you hate a certain task, that your husband (in my case) hates it too.
There have been times when I’ve struggled on doing my “fair share” of something I really don’t enjoy <cough-cooking-cough> only for it to turn out that he really enjoys it, but loathes doing something I don’t mind getting on with.
There’ll always be stuff you have to do, or times there’s no one but you to do it, but if you have the option of support, use it. Don’t be stubborn.
10. Take time out. It can be half an hour in a darkened room. It can be watching awful television. It can be doing wheelies on a motorbike on an empty beach. Whatever it is that you need to let your brain filter out the noise.
This can be once the kids are in bed. Sometimes days are exhausting. Use what you have. Sometimes it’s ok to give in and stick them in front of the TV or the iPad. If it’s not a regular pattern then you’re already beating most of the population. Keep yourself on an even keel. It will help them. It will help you.
They don’t want you to be an all-singing, all-dancing parody of a parent.
They want to feel safe and loved. They want fun and structure. They want someone to listen to them. They just want you.