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.

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45 thoughts on “Dear Autism Parent

  1. Yes, yes and yes! I have 3 diagnosed autistic children and another who I strongly suspect is rather in denial ( but that is their business) and I have always tried to get the opinions of autistic adults because surely they are way more likely to empathise with my child’s struggle than anyone NT. I may be autistic myself but I haven’t been assessed and frankly, I’m not sure I want to be, I’m loved and accepted by the people I care about and everyone else can do one. Anyway, I digress, thank you for writing this. No parent’s journey is the same, but we must look after ourselves, no matter the circumstances, and especially if we care for a child that takes that extra understanding and support. I’m possibly waffling now because I’m exhausted after a week of nightmares (the youngest, not me) but thank you again for writing this.

    Liked by 3 people

    1. Thanks for commenting! I’m glad you’re getting as wide a picture as you possibly can. When people like me offer up our experiences, it’s partly catharsis, partly awareness-raising, but also, we want to be able to help. Sounds like a tough week for you – get some rest (I need some too!). And no worries for waffling/rambling – you wouldn’t believe how much longer my posts are before I do the last bit of editing/pruning… 🤔😳

      Liked by 1 person

  2. Boy, can I relate to your experience and to your reasoning for identity-first language. I was formally diagnosed as autistic at age 21 in 2007 only to lose my diagnosis for some stupid reasons last summer. You articulate so well why this has angered, upset and saddened me. I mean, I may be “high-functioning” too, but I’ve struggled my whole life and a diagnosis gave an explanation to that. It took a lot of courage to ask y parents to participate in one more diagnostic assessment for a second opinion (in the Netherlands, parents need to verify that the child had problems all along), because like many parents of “high-funcitoning” children, they don’t like the label. Many parents think the label, and as such identity-first language limits us. At least my parents do. I can’t prove them wrong, because I landed in a mental crisis nine months after my diagnosis, but I do realize I’m much happier understanding myself as autistic.

    Liked by 1 person

    1. Your experience sounds so difficult – I’m sorry you lost your diagnosis. I’m glad you relate to what I’ve written – it’s difficult sometimes to strike a balance in my writing, but I like to be able to speak to different audiences, and I hope that everyone can take something of worth.

      It’s very important to me that parents of autistic children listen to people like me. But it’s equally important to recognise that they too need support and understanding.

      I hope things work out for you. All the best x

      Like

  3. Absolutely – I’d give you a firm hug if you’d let me. I can never get too much information on what it’s like from the inside. Both my sons have ADHD, as does my husband and it’s a gift in a way, to have his input and understanding when their behaviour baffles me. My eldest has ASD and I think his brother might too and I try to understand so articles like yours are informative and useful. So many people seem to forget that children with autism become adults with autism. Thank you for this!

    Liked by 1 person

  4. Great post!

    Also this: “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.” It still amazes me that it took me over 40 years to establish that this is what I was also doing, and NOT what others were doing!

    I’m still amazed that I thought I had a reasonable understanding of what autism was, but actually had no idea of how these clinical descriptions applied to my own experiences…it was reading an account by another autistic adult of her experiences that finally helped me to understand and seek a diagnosis 🙂

    Liked by 2 people

    1. Me too – so much of what I you just said. I had wondered at various points whether I might be autistic, but I didn’t fit the descriptions, or the stereotypes. The sensory stuff as well – I never realised until recently how huge this aspect is for me.

      It wasn’t until I started watching YouTube videos made by autistic people, and reading blogs by autistic women (predominantly) that I recognised myself and decided to get assessed.

      Liked by 1 person

  5. Thank you

    This has me crying but I really got it. My son is high functioning like you. It has been a long journey and still is as he has no diagnosis.

    It has helped me understand him so much better.
    I do isolated like you say and now it makes so much sense.

    Thank you

    Liked by 1 person

  6. This describes me to a T. I’m 38.5 yrs old. I went for a diagnosis and have been told because i only score 27 on the AQ cut off is 32 and I score too high on the EQ with a score of 41 cut off being 30 or less, I’ve been told I’m probably not autistic and they won’t refer me to a specialist. Only 80% of diagnosed autistics reach the required scores so there is still a 20% chance that yes, I am autistic.

    The weird thing is I can spot autism straight away in children and strangers yet, totally missed it within my own family. On reflection both my parents are to varying degrees and at least 2 of my children if not all 3 are displaying similar issues to what I suffered as a child. However, knowing that are suffering like I did does not help me with their behaviour especially as my own issues start to take over. For instance, my own children’s whinging, for nothing, not if they are generally upset, hurt or ill, really sends me into an irrational rage, which really does not help any situation. Although, since realising that I am indeed autistic, I just need to prove it, I have been able to understand the triggers and strategise against them semi successfully.

    The main problem is how do you prove your autistic when you’ve been acting and blending in for so long, you don’t actually remember who you actually are????? Any tips on this would be greatly appreciated!!!!

    Being highly functional, I have a 1st Class BSc Hons Mathematics, I have been able to go under the radar in both primary school and secondary school. I suffered severe post natal depression after my first child and was misdiagnosed with Biploar Disorder. I currently have a diagnosis of emotional unstable personality disorder possibly impulsive type. So basically ADHD. I don’t really dispute either diagnosis but autism is the only answer that covers everything about me from about 5 to now.

    In both my eldest amd myself our autism did not manifest, for want of a better word, until we started school. Our autism mainly affects us in the family home, we rarely have our childhood meltdowns anywhere else. Subconsciously choosing to only melt down infront of those we love, who love us regardless, even though they don’t understand and think we do it on purpose. I was also, like my parents responsible for this heinous thinking until I realised that whatever I have my son has and I know I didn’t do it on purpose.

    I feel like a failure because no one seems to want to listen to me and blame my parenting on my children’s behaviour. I have been on 4 separate parenting courses and passed them all. It is not my parenting, whatever it is, it’s genetic and trying to prove it is the hardest thing I have ever done!!!

    Drewsyla

    Liked by 2 people

      1. Parenting is ridiculously hard. I totally relate to what you say – because my daughter is autistic, I feel I ought to be able to “get where she’s coming from”, and I some ways I do, but often her sensory needs, meltdown triggers, and routines/systems are at odds with mine. I find myself having a meltdown in response to her meltdown! I think in the longer term, that ability to understand you children’s perception and viewpoint WILL help, but it’s a slow learning process.

        We also still have a 15mo little boy as well. Sometimes when the kids are crying, I’m too caught up in my distress at the noise to properly address what’s making them upset. I’m hoping it’ll get easier as they get older.

        When you’ve asked about assessment, have you provided detailed written documentation? When I saw my GP, I turned up with an 8-page typed up document mapping my traits, life experiences and behaviour against the DSM-V criteria. Not only did both GP and clinical psych find it useful in terms of detailed evidence, the psych commented that the very fact I’d approached evidence-gathering in such an ‘obsessive’, focused way was itself quite telling! Have a look on the information and resources of my blog (it seriously needs updating, but I lack the mental space to do so) – there are some links there that might be useful.

        I score 36 or thereabouts in the AQ, so not massively high. But I think there are other ways of getting evidence together.

        I *completely* understand the thing about not knowing who you are because you’ve been masking for so long. It’s massively common in late/undiagnosed autistic adults, especially females. One reason why many get misdiagnosed with personality disorders. For years I thought I was an extrovert – I only recently realised that wasn’t the case.

        Sounds like you have a lot to deal with. I’m sorry you don’t have any firm answers at the moment. I hope you can get some clarity soon (and I hope things get better soon parenting-wise!) x

        Liked by 1 person

      2. I didn’t go in there with a detailed history and tbh, in yhe first half hour the doc kept saying definitely not because I was presently clearly and articulating myself clearly. She then left the room and I was left alone with myself. In the time she was out, I hadn’t even noticed but I was now shaking my leg, tapping my fingers and almost swinging in my seat, by the tine she came back, I was now in a state of hyperactivity, sweating profusely because I had been so nervous about going that I had obviously put o yet another mask and when she left, my whole being kinda went into overdrive.

        I did the tests, talked about my childhood. I was told because the onset of autism or adhd generally presents it between 2-5 and because I had mother attachment issues and sexual abuse in this time, they may never know at what point things changed.

        I find myself wondering if EUPD is actually a condition that affects everybody or if it actually an autistic condition that is triggered by abuse, etc etc and because of the way we are either under emotional or over emotional, these types of stresses are just too much for us to handle without some damn good therapy- of which I’ve yet to receive but have found that confronting the people involved has made a huge difference to the way I feel about things. I finally took control and won!!!! So, in a way I now dispute that I have EUPD anymore and that now my mood swings are just typical of the type of autism I have.

        I believe as I may have said earlier that I have Pathological Demand Avoidance, Aspergic traits and also have ADHD, as a child n teenager it was more the hyperactivity but also had a large inattentive side, nowadays, my ADHD is mainly inattentive.

        Whereabouts exactly am I looking in the website for the comprehensive notes you took in with you? I am not allowed to be re referred for another 6 months but perhaps I could send in my ‘proof’ to the doctor who did my assessment.

        I was quite annoyed because after 2.5 hours with me, she agreed that I do have some strong traits of both ASD and ADHD but concluded that only ADHD was possible as I scored highly on the adult ADHD test and not for ASD because of my scores. 😦

        Thank you for responding twice btw. I was touched.

        Xxxx

        Liked by 1 person

    1. Sorry – I inadvertently replied to my own reply, rather than your original comment, so I’m not sure whether you’ll have been notified of my more detailed response. See above!

      Re: identity. I have no easy answers to this. But I definitely think writing about it has helped. Organising my thoughts through the written word helps me to reflect in a very meaningful manner

      Liked by 1 person

      1. I have started a blog in facebook called Mummy On A Work Break. I write in fits and starts plus the site also contains my new business which I came up with after realising I may be autistic and this may be why I have difficulty with colleagues especially those in charge, so I fogured why not try and be my own boss, no one to argue with or be offended by then.

        Xxx

        Liked by 1 person

  7. My six yr old girl was formally diagnosed two days ago. Today, my Aunt told me that she is the same as my six yr old and was never diagnosed formally as 50+ yrs ago it just didn’t happen….but already her knowledge and experiences are there ready to be shared. Thank you for your sharing. Adult life lessons and experiences will be invaluable to our family.

    Liked by 2 people

    1. You’re most welcome. It’s amazing how much starts to become clearer the more familiar we are with others’ experiences – I sought assessment after reading up when our daughter was referred. But the more I think about it, the more I notice how many of my family have traits. It’s hard for those of us who are undiagnosed/diagnosed later in life. I hope our children have a better experience. All the best to you and your family.

      Liked by 1 person

  8. It’s not more than a month that i’ve realized that i am autistic (thanks to my autistic son…).
    I’m so overwhelmed of all this new information and still, this letter, describes me so well that i feel it’s writen from me 🙂

    Liked by 2 people

    1. Thank you for commenting – I’m glad it resonates! I sought diagnosis after reading up on it because we’d asked for a referral for my daughter (diagnosed in September). But a lot of the ‘official’ descriptions didn’t seem to apply to me – it wasn’t really until I started reading blogs by other autistic women that I started to recognise myself in their words. All the best to you and your son x

      Liked by 1 person

  9. Autism mum here. I will grasp your hand. This is wonderful, thank you. I want more than anything to see more hands reaching across the divide from both “sides”, just like you’ve done. And others willing to grasp those hands. There is way too much silencing going on, and certainly no need for us all to be so divided as a community. There is so much support available from people like yourself – I dream of a day when autism parents are able to be generally respectful enough to really listen. And there are a lot of long time Autistic Allies like myself around too – I also look forward to the day when our extended hands are grasped and our offers of support/advocacy are generally considered acceptable. We need to work together to bridge the divide.

    Like

    1. Thank you so much for your words, Verity. I quite agree. People have many reasons to be understandably angry about so many things, but for me it’s healthier to reach out with compassion. It’s so important that there are people like you who, like me, want us all to join together to make thing better. All the best to you and your family x

      Liked by 2 people

  10. Wow, what a fantastic and amazing post, girl! 👏🏼👏🏼😊

    I have no children at all, but I really appreciated this from the perspective of an Aspie/autistic adult who, up until a few years ago, had always assumed that I would have children (it seemed to be the next logical step, a step we never did end up taking) 😊

    I really applaud your efforts to reach out to the great parents out there, since no child comes with an instruction manual 😉, especially not those of us of a different neurotype. Relating and understanding can be tough as it is! Kind of a culture clash, if you will. This post is, the way I see it, a beautiful unifying bridge. Very well expressed! I like it a LOT ❤️

    Liked by 1 person

      1. Totally agreed! 👏🏼👏🏼 So true, on both points–the building bridges and the need for support – you nailed it! 😘❤️

        Liked by 1 person

  11. This is a really great piece. I would make one more point, though, because sadly it has become the bulk of my interactions with many parents of autistic children (I refuse to use the term ‘autism mom’ – you aren’t parenting autism, you’re parenting your kids).

    Most parents only want the best for their children. They do everything for them, to give them the best possible shot at a “good life,” whatever that means.

    Some do not. Some abuse and murder their autistic offspring. And their sentences are uniformly short, with rare exceptions.

    And we have NO IDEA which one you are.

    I’m not saying that we think every 20th parent is going to murder their autistic kid. But we do know that these killer parents are routinely described in the same way that many “autism parents” describe themselves. And we know that generally, as autistics, we often suck at reading people.

    We also know that many, many, many of us are emotionally, physically, and psychologically scarred, even from “interventions” designed to help.

    I just think it’s important for parents to understand why stuff like this is so personal. Because so often I don’t get “I can understand why the attempted murder of a 14 year old solely because she was autistic and ‘burdensome'” might make you angry and upset.” I get “how dare you ever even tangentially bring up that autistic people are often victims of violence from their parents! I would never and you’re a monster who must hate me and all parents!”

    No. I don’t. But I value autistic life more than people who often look like parents do.

    I hope that makes sense. Not trying to attack anyone personally – just to add another point where miscommunication and misperceptions seem to rule between autistic adults and parents or caregivers.

    Liked by 1 person

    1. Thanks for your comment, and I agree (and it makes complete sense)! The deeper, abusive side is something I haven’t really addressed anywhere on this blog site – partly because my own experiences with hyper-empathy make it, very often, too distressing a subject to confront. It just upsets me too much. I’m hoping to reach out to those parents who WILL listen and respond, and my intentions are to be as compassionate and open-minded as I’d like others to be in return. Mutual respect is often lacking. But there’s SUCH a dark history to the (mis/mal)treatment of autistic people, and it’s something that DOES need to be confronted. One problem is the continuing dehumanisation of autistic people and/or portrayal of autistic people as less than human, and that has to stop.Thanks for your comment, and I agree (and it makes complete sense)! The deeper, abusive side is something I haven’t really addressed anywhere on this blog site – partly because my own experiences with hyper-empathy make it, very often, too distressing a subject to confront. It just upsets me too much. I’m hoping to reach out to those parents who WILL listen and respond, and my intentions are to be as compassionate and open-minded as I’d like others to be in return. Mutual respect is often lacking. But there’s SUCH a dark history to the (mis/mal)treatment of autistic people, and it’s something that DOES need to be confronted. One problem is the continuing dehumanisation of autistic people and/or portrayal of autistic people as less than human, and that has to stop

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      1. Thanks for this debate, as I read this I am rather shocked and am fighting back tears. I am rather new to this journey of being a parent to an autistic child, just a year in. I am crushed and shocked to hear that parents would treat their children, their offspring so terribly because they have ASD. Nevertheless it is something that should be aired.

        Liked by 1 person

  12. Beautifully written! I felt the compassion. It didn’t make me uncomfortable at all; I get where you’re coming from and the angle taken, and I love it! 😘❤️💜

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      1. Oh yes, definitely a wise move 😊 Just in case. We never know how our words might get (mis)understood ❤️ Suddenly something gets misinterpreted and it’s like “doh! I never thought of it that way. Now I can see it, but it might be too late! Doh!” (Yes, I find that a second “doh” is usually warranted lol) ❤️

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