[To all my #actuallyautistic readers: please bear with me. Some – perhaps a lot – of what you read in the following post may seem a little uncomfortable. But try and stick with it, and hopefully you’ll see where I’m going with it. Love and compassion to everyone, as always.]
Dear Autism Parent
I just wanted to say “hi!” to you, and to reach out to you. You’re a parent of a child with autism; I’m a person with autism. I hope, therefore, that we can make some kind of connection, if we’re both willing.
Just then, I introduced myself as a “person with autism”. This is because I recognise this is the language usage with which many people are familiar. It may be the form you’re more familiar with, and possibly more comfortable with. But personally, I prefer it if the “identity” bit comes first. I’ll explain why a little later on in this letter. But I’m just going to give you the heads-up now that this is what I’ll be using from now on. I’m an autistic person.
Anyway, back to my letter.
I know you find things tough. Your child is different from those of your friends, colleagues, co-workers and wider family. When you and your partner or spouse (if you have one) were expecting this child, you had something different mapped out. You imagined things were going to be a different way. And then, your precious child arrived, and things didn’t go quite as you’d expected. Things aren’t at all what, or how, you imagined they’d be.
I get that. I understand. I’ll explain why later.
Yes, parenthood is different from how you’d expected it to be. And it’s different for you than how it is for those around you. They don’t see the struggles you see every day, every evening, every night, at home. They don’t see your tears. They don’t see your battles with local authorities, the school system, specialist support teams, health professionals, as you try to get your beloved child the support they need. They don’t know that you’re trying to do all you can, because you’d do anything to stop your child from suffering.
All they see is the screaming and shouting at the school gates, the lying on the floor on the supermarket, the lashing out, the thrashing about.
You think people are talking about you. You wonder what they’re saying. You feel embarrassed. You’re demoralised, dejected and downbeat from seeing yet another one of those “looks” directed towards you and your child.
And I get embarrassed too. I know what that’s like. I, too, get that sinking feeling at wondering what others think of me. A lot. And, like you, my struggles are often invisible.
Again, I’ll explain more a little about this later.
You feel isolated. You can’t just go out and do things with other friends who have children. Everything for you and your family just takes far too much God-damned organisation. And at times, things that were planned do not happen. At other times, you simply get the feeling that people don’t want you around; that you’re something of an inconvenience. Because your life as a parent is different to theirs; your child is different. You can’t always put your finger on it. But you feel alone, and lonely.
And I get this, because I’ve often felt it too. And once again, I’ll explain. Soon.
You’re frustrated and worried for your child. You feel isolated, and you’re also worried that your child is, too.
Perhaps they’re non-verbal. They can’t speak, and you don’t know how you can get them to communicate. You see all this “behaviour”, and you don’t know what to do with it, or how to handle it. You have no idea what’s going on inside. Is there anything going on inside?
Or perhaps your child has been labelled as “high functioning”. They’re at school, but they’re not joining in with the other kids. They’re off in their own world, and they seem quite happy there, but it doesn’t seem right to you that they’re on the outside. It doesn’t make sense to you.
Or perhaps you can see that they’re on the outside, but they’re desperate to join in. They’re trying so hard. But something’s getting in the way. They’re getting it all wrong. And this breaks your heart.
And you wonder how on earth anyone can teach you how to make things better for your child. You love your child more than anything, and you hate to see them suffering. You’d do anything to stop them suffering. You listen to specialists, and “experts”. You try your best. And it still isn’t enough.
And you come across people online describing their experiences. And you can’t believe that any of these people online would ever know what it’s like to be you. Or what it’s like to be your child. They cannot speak for your child. They do not speak for your child.
And your struggle goes on. And you suffer it. Alone.
And so, to me. I’m reaching out to you, and I’d like to tell you a little more about myself.
I’m an autistic adult. I received my formal clinical diagnosis only this year, just four months before my 37th birthday. I have an autism spectrum disorder (ASD), deemed to be “synonymous with Asperger Syndrome”. My autism has also been described by the clinician who assessed me as “atypical”.
And now, perhaps, you may be thinking that this person writing to you is nothing like your child. She’s obviously “high functioning”. She got through nearly half a lifetime without a diagnosis. Her struggles surely can’t be that big if she’s got this far.
What business does she have thinking that she can speak for your child? What business does she have thinking she can share her experiences with you?
Who does she think she is?
I don’t wish to generalise. You may not, of course, be thinking any of this. But many people do. And for that reason, I must explain.
I’m not going to speak for your child; you’re right, I can’t. But I’m going to speak for myself.
I decided, aged 36, to request an assessment for autism because things have not been easy for me. You see, there’s lots about my autism that isn’t visible. And yet, my experience of the world shares some similarities with that of your child.
Some noises feel so physically painful that I want to lash out and scream. Bright lights, flashing lights, anything with a strobe effect – these can overpower me and make me dizzy. Certain patterns and colour combinations disorient me. Some scents make me sick to the stomach. A firm hug from someone close to me is welcome, but light touch feels like assault.
I am constantly bombarded by too much information. My brain can’t filter out the important from the unimportant. I get easily overloaded. I struggle hugely to make simple decisions because my brain needs to analyse every single datum of information pertaining to each choice.
I need control – I am so often overloaded by the chaos of the world. I plan, prepare, and have routines. I like advance warnings. I like familiarity because it takes away the chaos and the need for decisions to be made.
And when control is taken away from me, I struggle to cope. Unexpected changes throw me completely. I get panicked, confused and distressed because unexpected changes mean yet more decision-making, and not enough time for my brain to do it. When I’ve already expended so much energy to plan or prepare for something, sometimes the thought of having to do so again under pressure is too much to bear.
But many people don’t see this. Because I’m “high functioning”. Because I have always had to try and appear “normal”. And this is stressful, and exhausting, because I have to analyse everything consciously. What comes natural to you may not come natural to me. But because I can speak, and can usually “function” in society, people assume I don’t need support, or understanding. And then they struggle to accept me when – tired, overwhelmed, and stressed – my efforts to appear “normal” unravel.
It often feels like I’m neither neurotypical enough, nor autistic enough. I can’t live up to anyone’s expectations. Imagine how that feels. When you don’t fit anywhere.
Parenthood is not going quite as you expected. Things have not always gone as expected for me, either. At every new stage in my life, I imagined what was coming next, and I expected things to be better.
Secondary school would be better than primary school – I’d have new friends; I’d find a place to fit into; I’d be treated differently; hell, boys might even fancy me. Things didn’t go quite as I’d expected.
University would be better. All the suffering I’d endured at school “just for being clever” would evaporate because I’d be around more people like me. And yes, sometimes it was better than school; that’s true enough. But there was still something “wrong” with me. The clever people in my seminars were still not quite “like me”. I realised that it wasn’t just about being clever. There was something intangible that I simply wasn’t “getting”. I got into scrapes. I had breakdowns. I spent weeks in bed, depressed. I wondered how the hell life could possibly get worse, and how on earth it could ever be better again. Things hadn’t gone quite as I’d expected.
You think people are talking about you. You’re often embarrassed. And I understand that only too well.
Because throughout my life, the fact that I am neurologically different has been the cause of embarrassment time after time after time.
Those meltdowns your child has? I have them too.
Mostly behind closed doors, when I’ve reached the end of my tether, I hit myself repeatedly on the head, punch my fist into walls, flail my arms, thrash around, scream, shout. Or I collapse to the floor in floods of tears. I swear. I berate those around me. Or I lose the power of speech completely.
And sometimes this happens in public. As it has done at various points throughout my life. When it happens, it is not something I can control. It is already too late. Whatever set that meltdown off was the last straw in a series of unfortunate occurrences.
Imagine how embarrassing that must feel. I’m an adult. A wife. A parent. A professional. And sometimes I lose control, and it hurts. And I know people might be staring. Or talking. Because my behaviour is “not normal”.
The very fact of being a verbal autistic person has got me into trouble. I’ve misread people, and misinterpreted situations. I’ve been taken advantage of, manipulated, abused. People have misread me. They’ve expected me to be just like them, and I’m not. I can’t be.
My emotional and social naivety have embarrassed me. And for years, I had no idea what was happening. And I blamed myself. I was stupid. Awkward. Incompetent. Ridiculous. A complete nut job.
Going 36 years without an autism diagnosis didn’t mean I wasn’t autistic. It just means I had no way of explaining to anyone, even myself, why I had these struggles. It hasn’t been a privilege to have gone so long. The simple fact is, people like me didn’t get diagnosed in childhood – not because we weren’t or aren’t autistic, but because there is more awareness now than there was back then. And many of us have been deeply damaged by lack of support, understanding, and self-knowledge. I’m one of the lucky ones only because I’m still around to have got a diagnosis in adulthood. Things are better now. But not everyone gets the chance I have had.
As an autism parent, you feel isolated from your peers. And there have been many times when I have felt like this too.
There were times when I enjoyed being the girl in her own world. Being forced into playing games with other children was not for me. I was happy imagining, exploring, examining. I was clumsy. Slow on my feet. I could never keep up in a game of tag. Why would I want to join in with a game that was so difficult when I was so happy in my own company?
At other times I desperately wanted to join in. But I said the wrong things. I misunderstood. Yes, I had many friends, but my friendship groups often changed. Public meltdowns tend to burn a lot of bridges.
These days I have wonderful friends, family and colleagues. People who appreciate me for who I am. But there are times when my difference still isolates me. I can’t read people in the same way that others can. I can empathise from afar, and imagine myself in the shoes of others, but up close, in the moment, I still can’t always tell what’s going on.
I’m nearing the end of this missive. And the upshot of all of this is to say that whilst I am different from you, and different from your child, all of us have certain things in common. Humanity is diverse, but there is much that we all share.
And so, a few final things I have to say to you, dear Autism Parent. And the first is this: be kind to yourself.
Some autistic people don’t believe that parents need any support. I don’t agree with this view, but I understand where it comes from. You see, we adult autistics are so often ignored by the media, by health professionals, by autism charities, and by parents of autistic children that many of us are rightly angered when support, services and sympathy are diverted away from us. Many of us have fallen between the cracks and been neglected our whole lives. I’m lucky. I had a loving upbringing. But with no diagnosis came no official help.
But I speak as one parent to another: I know there are times you need help. A listening ear; a shoulder to cry on; a helping hand. Professional help, even. It’s not wrong to feel like this. Things are hard. Parenting is hard. And statistically, you are more likely to be depressed than a parent whose child is not “different”. I know depression only too well. I don’t want you to suffer.
So care for yourself. Look after yourself. Take the opportunities offered to you to look after you. Because looking after yourself puts you in a better place to be the best possible parent to your child.
But please realise this: when autistic adults offer their experiences or insight, consider listening. We do not speak for your child, but we’re not really all that different from them. Telling us we’re “not autistic enough” insults us and trivialises the hardships many of us have endured. Hardships that, yes, may be very different from what your child might experience, but hardships nevertheless. I’ve earned the right to label myself as autistic. It explains everything. It is not all that I am, but it defines so much of who I am.
And that is why, for me at least, the identity label comes first. That I’m still a person should be obvious.
I know you want to do all that you can to help your child. But please know this: whatever their verbal capacities, or their ability to interact with those around them, there is someone in there. And that someone is complete. Whole. A fully formed autistic person. They cannot be someone they are not, so please don’t try to make them. Don’t stifle their need to be themselves. Instead of re-training, restraining or restricting, try redirecting. And learn from the experiences of autistic people. They may provide that one inkling of insight that makes a real difference.
If your child cannot speak, they can still communicate. Behaviour is communication. Learn to read it. And again, learn from the experiences of autistic people, and you’ll start to understand some of what your child is experiencing, on the inside. It might be hard; I don’t deny that. But please, keep at it. Don’t give up.
And remember, your child’s “happy” may look very different from yours. And that’s fine. Their version of “happy” is as valid as any other.
People like me are only too happy to help people like you, and people like your child. There is a lot we can help you with, if you’d only let us.
I’m an autistic person, and I’m reaching out to you.
Will you grasp my hand?
— Mama Pineapple.
The Misadventures of Mama Pineapple 