#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 30: April is nearly over, and I need to take a break (for a short while, at least).

Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

[Trigger warning: mention of suicide, murder, child abuse, sexism, cissexism, heterosexism, racism, gaslighting, social media abuse, “cure” therapies, ABA, ableism, neglect, mental illness.]


We’ve reached the end of April. The end of Autism “Awareness” Month. The end of Autism Acceptance Month.

And it’s been a hard one. I’ve kept my interaction with social media somewhat limited, but have still managed to encounter much that has upset me.

The thing is, “awareness” doesn’t stop after April.

All year round, every single day:

  • Somebody, somewhere, is working on a “cure” for something that isn’t even a disease or a problem.
  • An autistic adult is being told that their views are not valid because they’re “not autistic enough”, or “not like my child”.
  • Elsewhere, a non-verbal autistic person’s needs and views are being ignored because those around them presume them incapable of intelligent thought.
  • An autistic child is getting the feeling that they’re “broken” and not the child their parents wanted.
  • An autistic child is receiving stressful, traumatic conversion therapy to make them “normal” and remove their autistic “symptoms”.
  • An autistic child is becoming seriously ill through being forced to drink bleach or overdose on vitamin C to purge them of “toxins”.
  • Someone is talking, in all seriousness, about “vaccine damage”, and about autism being an “adverse effect” of vaccines.
  • A parent or caregiver is contemplating murder.
  • Somebody, somewhere is telling an autistic woman that they have no business calling themselves autistic because they, and others like them, have caused the diagnosis to be “dumbed down”.
  • Female autistics, autistics of colour, and queer, trans and/or non-binary autistics are being told to “stop making it all about them” as everybody needs support.
  • Somewhere, a media outlet is mocking autistic people and enforcing dangerous stereotypes.
  • A harmful meme is being spread on social media, and autistics are being told to “lighten up” and “get over it” as it’s just a harmless joke.
  • A healthcare professional is delivering an autism diagnosis to the parents of a child, and warning them of all the things that child will never do and explaining all the ways in which they are broken.
  • An advertising campaign is doing exactly the same in a series of commercials, flyers, and posters.
  • An “autism warrior mom” is lamenting her plight and desperately wishing that her child wasn’t such a burden.
  • Another parent is battling educators, healthcare providers, insurers and local authorities to get the support their child so desperately needs, but that is so difficult to come by.
  • An autistic teenager is contemplating suicide because they can’t stand the bullying any longer.
  • An autistic adult is staring at another job application form, wondering whether to disclose or not, how they’ll manage an interview and wondering whether this time they might finally get lucky after so much rejection.
  • Another autistic adult is trying to fend off the overwhelm and overload of working in an environment that’s uncomfortable, painful and overly-demanding of their senses and cognitive function.
  • Yet another is wondering how on Earth they’re going to get the financial support they need to enable them to live.
  • An ill-advised person in a position of power and influence is bemoaning the “autism epidemic” and wondering how on Earth it can be stopped; how autism can be put to an end.

And so much more. All over the world. Every day.

The scourge of “Awareness” never stops.

And so the work to promote Autism Acceptance must never stop. There is so much work to do.

Meanwhile, autistic people are living, loving, laughing, thinking, creating, caring, acting, performing, helping, supporting, advising, campaigning, sharing, uplifting, amplifying, celebrating, commiserating, learning, working, teaching, making, saving, rescuing, mentoring, encouraging, inventing, designing, innovating, suffering, shouting, crying.

Speaking.

And all the other things that humans do.

We’re here. It’s time to accept us, and appreciate us as a part of the world we, and you, all live in together.

Thank fuck April’s nearly over.

But the struggle never stops.

***

As for me, I’m going to have a bit of time off. My emotions, and my hyper empathy, have been, well, hyper, this month. I’ve been up, I’ve been down. And I’m pleased I’ve managed to post an entire month’s worth of images, every day, to do my bit to promote Autism Acceptance and Appreciation. But it’s cost me, as has seeing all I’ve seen (and I haven’t seen the half of it, believe me).

So next month, I’m not going to be around much. I might post the odd thing; but I might not. I’ll see how I feel.

May will be a month of self-care. God knows I need it. And my family need me. My loving husband and my beautiful children will be my focus this coming month. Plus work, and a couple of long-overdue projects that really need my attention.

I’m going to have a rest from blogging, just for a short while.

Ta-ra for now, chums!


[Image description: Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

I’m very sweary, and would normally quite happily not star out the swear words, but I’m hoping doing in the featured image so might help the circulation of this a bit.]

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Lost for words

I often struggle to translate my thoughts into either speech or the written word.

Sometimes I lack the particular executive functioning powers required to organise and synthesise what’s in my mind, to present it to an external audience. At other times, the very fact that I have set myself the task of writing means that I have made a demand of myself. I have told myself I “must” write. And the moment my brain seizes upon the notion of the imperative, some inner refusal mechanism kicks in.

But very often, it’s something far more mechanical.

I found myself in a Twitter exchange a few months ago about how there are times when I’ll have phrases, sentences, paragraphs, and entire, in-depth arguments and treatises swirling around in my mind, only to discover that – when I attempt to commit them to the written form – they are not there.

Being autistic means I process the written word far more effectively than the spoken. I have time to craft, to ponder, to review, and revise. With speech, once it’s gone, it’s gone; with the written word, I can edit what I’m putting “out there”. 

But it’s not as simple as that.

No matter how much easier I find it to deal with the written word, and no matter how much I enjoy writing (and I love it!), writing does not come easily to me. It’s as if there’s some loose connection between the thoughts stored in my mind and the means I have at my disposal to convey those thoughts.

In that Twitter conversation, back at the start of this year, another user talked of “outside head” language, and how this differs from what’s inside the mind. For me, sometimes, the act of committing my words to a written or spoken form means that something gets lost in translation.

There’s a disconnect between my mind and my body.

I’ve noticed that the thoughts come more easily into shape when I’m committing pen to paper than when I’m using technology. The simplicity of the medium provides a smaller risk of overload or distraction. I’m not tempted to tinker with the formatting, edit or delete compulsively, or simply bugger off and check Facebook.

And yet here, I have another problem. Writing longhand for extended periods is something I find intensely painful. I grip the pen too hard. And congenital abnormalities in my elbow joints mean that one of my nerves is constricted whenever I bend my arm. And so I face a dilemma. Writing longhand means pain. But, whilst different, is this any worse, really, than the pain I get from repeatedly typing on an iPad screen?

I’m required to type a lot at work. I have a specialist ergonomic mouse and keyboard, and wouldn’t be able to manage more than around 10 minutes of computer use without them. I could, of course (as people often suggest), use the voice dictation software purchased for me to alleviate the pain and reduce my use of my hands.

But here I am once again, faced with that disconnect between brain and body.

How do I get my words out?

There are times when I feel I have so little control over my own body. I feel impeded. Component parts don’t quite speak to each other as they “should”.

I forget common, everyday words mid-sentence when I’m tired or overwhelmed. I “lose function” dramatically when I have a meltdown. But this other “loss of function” is a subtle, nuanced, hidden loss of function. It isn’t obvious. With time, effort, focus, a whole lot of internal chastisement, and that persnickety, pedantic, perfectionist attention to detail, I overcome it.

But so often, I still feel lost for words.

Fallout

I have a bruise on the ring finger of my right hand. And it’s all my fault.

Or is it?

The morning rush after a terrible night’s sleep. My daughter has a cold. She was up for much of the night coughing. And I was up with her – feeding her medicine, wiping her nose, drying her tears, cuddling her. Both of us are very, very tired.

The little boy is teething. My husband is up, but my son knows from my state of dressed-ness and ready-ness that I’ll be out of the house soon, and he wants to be with me while I’m still here. He’s screaming with the pain of his inflamed gums.

Daughter is demand avoidant because she is tired and unwell. It’s been a struggle to get her dressed for school. But we’ve succeeded.

And just as I’m about to take her to the bathroom and help her brush her teeth, I open the curtains in her room, and accidentally knock one of her Lego creations onto the floor.

And no matter what I do, I can’t put it back together exactly as it was.

And I need to get to work. My boy woke us far too early, so I might as well get out of the house, start my working day early, and come home early. But the Lego creation is broken. And my daughter needs her teeth brushed. And she’s tired. And I’m tired. And my son is crying. And my daughter is upset. And it’s all too noisy. And I can’t stop people being upset.

And I’m upset.

And something snaps.

I rush out of the room, and hit my hands repeatedly into a nearby wall. The wall is inanimate; it can’t feel pain, it won’t bleed, and it won’t fight back.

Only this time, I hit too hard.

I have a bruise on the ring finger of my right hand. It’s not huge, but it’s there. The finger is swollen. It hurts.

Logical, objective reasoning should have suggested an alternative. Some other way of getting the vestibular or proprioceptive release I was evidently seeking. I could have windmilled my arms; spun in a circle; jumped up and down on the spot. I could have flapped my hands extra vigorously.

But in that moment, my reaction was uncontrollable. Unavoidable. I succeeded in being far less self-injurious than I might once have been. But that violent release still felt necessary.

But now I’m fine.

My day is well-planned. My work schedule has a structure to it. And I’m looking forward to the things I’m going to be doing today. It should be a good day, despite how tired I feel.

Soon my daughter is fine. I brush her teeth. My husband gives Calpol to our son. I give them all enormous hugs and kisses before I leave the house. They hug and kiss me back. But my finger still hurts.

I’m a “high functioning” autistic person. An “Aspie”.

And yet here I am, with a bruise on the ring finger of my right hand.

From hitting a wall in reaction to some broken Lego.

Dear Autism Parent

[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.