Autism? More like bad parenting.

Autism? More like bad parenting.

I am a good parent. There, I said it.  Sometimes, admitting that you are actually doing a good job can be as hard as admitting you need help. Don’t get me wrong – I am not perfect. I have felt so exhausted that I have given in and handed over that cake, or turned on CBeebies.

But I have also followed a steep learning curve with parenting, especially when dealing with an autistic child. You know what? I am pretty damn good at dealing with my son. I can anticipate his reactions in a split second. I can work out which deviations from routine will completely overwhelm him, and which he can work through. I have reserves of patience far beyond what I thought possible. I am an expert on my children.

There are people who will watch my son and think I am a bad parent. I have heard someone express the opinion that Asperger Syndrome, and HFA, are ‘just an excuse for arseholes to behave like arseholes’. There are people, reading this now – yes, even you – who have seen situations similar to the ones I am about to describe and they have thought unkind and ungenerous thoughts.

‘That’s quite the scream. I wouldn’t stand for that. No child of mine would be making that noise in a public place – I’d march them straight out, so they knew on no uncertain terms that kind of behaviour isn’t acceptable.’

Now it’s time for you to admit it – you’ve had those thoughts. I know you have; I had them too – before. So I want you to imagine this…

You join the queue at a coffee shop and are confronted with a small boy flailing his arms and gritting his teeth. His mother is trying to hold him, stop him lashing out and hitting the class cabinet of glistening pastries. She whispers reassuringly –

“Sweetheart, I am so sorry. They don’t have a muffin. But you are still such a good boy, mummy is so proud. You can choose a different cake, I promise.”

The boy screams.

“Nooooo! Muffin! I wanted a chocolate muffin mummy!”

Spoiled brat, hey? It’s almost like a scene from Charlie and the Chocolate Factory.

BUT

An hour ago, my son was in a barber’s chair, sitting so, so quietly. He finds getting his hair cut very distressing. Any deviation from the routine or unexpected event is absolutely terrifying for him. I do not use that description lightly. Think about what that means for a second – absolutely terrifying.  But he has behaved impeccably; I am so proud. I promised him that if he was a good boy, he would have a chocolate muffin. He skips along, so happy and excited by my praise.

“Mummy! Mummy!” he shouts as he reaches for my hand, “I have been such a good boy! I can have a muffin!”

My heart breaks for him when, for the first time in memory, they do not have chocolate muffins; he thinks he has not been a good boy after all.

As you make your way through the aisles of clothing, you hear a boy screaming. You can’t help but search around to see what the commotion is. Finally, you see him, spread out on the floor. He is half sobbing, half screaming, kicking his legs violently as his mother tries frantically to scoop him up. As she does, his legs and arms hit her in the face and body. She ignores it and struggles to lift him. It is a huge effort to get him out of the shop; he is not small and those kicks and flaps are hurting her.

Wow. That’s pretty violent, right? I mean, he didn’t deliberately hit her but perhaps that child needs to know that those kinds of physical outbursts are not the way we behave?

BUT

Outside, on a bench, away from the stares, my son clings to me. Between sobs, I have finally worked out what I said that upset him so much that it was akin to physical pain. I said the hat had ‘The Cookie Monster’ on it. But the hat was covered in Cookie Monsters. For my gorgeous boy, mistakes, inconsistencies – they cannot just be shrugged away; they are a cigarette held to his skin until the relief of the correction comes. “Mummy, I was so sad. I was so sad because you said it wrong. It was wrong mummy!” he sobs. I stroke his hair. He is no longer flailing; he strokes my arm for comfort – my dear, loving, sweet boy.

“I know bubba. Mummy said it wrong. There were lots of Cookie Monsters. What a silly mummy, to make such a mistake.” His whole body relaxes in my arms.

And there are dozens of others I could describe –

Once, the sunshine made shifting shadows on the path and he was too scared to walk. After trying for an age try to calm, to persuade, I carried him, screaming, through the National Trust Gift Shop…

Once, he found a toy car park at the Children’s Centre, identical to the one at home, but with one horrifying difference – part of the spiral track was missing, forming a hole. Tormented by the other children sending cars down the track and into the abyss, he pushed them aside and sobbed and sobbed and sobbed…

Once, at a pizza restaurant, we forgot his special cup – the ONLY one he will drink from. And we could not make the screaming stop. He screamed and screamed and daddy ran back to the car, ran to the shops down the road to try to find an identical cup – but none could be found. The screaming only subsided after an hour, first turning to sobs, and then finally to whimpers.

I am not a bad parent. My son is not a naughty boy. He is sweet, honest, and affectionate.

And he suffers, every day, in ways that you – and even I – can barely begin to understand.

So if you see my boy in despair, if you read this and you still judge, still see bad parents and naughty children, when you have little idea what the reality is – well let’s just say it’s not my four year-old son who is the arsehole.

 

To read more about our autism journey, take a look at ‘To my son – your stimming is beautiful’.

 

Autism- More like bad parenting. A look at the way autism can be misunderstood by the wider community.

80 Comments

  1. 3rd October 2016 / 9:27 am

    Yes. So much yes. People don’t get it. Thanks for writing this.

  2. 3rd October 2016 / 9:32 am

    Great post, sure many will nod along in recognition. There’s far too much judginess out there from people who don’t understand. Let’s carry on trying to educate them! x

  3. 3rd October 2016 / 11:29 am

    Tears stinging my eyes reading this Danielle. I’ve said it before and I’ll say it again: I think you’re bloody marvellous. You have written this so beautifully and I salute you; for being an amazing mum, for understanding your son, for trying to change the way that people think. Thank you x

  4. Crystal Cabral
    3rd October 2016 / 11:54 am

    Ohhhhhhhh myyy gosh!!! I literally was saying YES , YES and wanted to scream and cry because, 1, you are NOT alone, and 2. I know how you feel alllll too well. Being such a awesome mom with a child with autism makes it SO hard and nearly impossible to have a relationship, for me anyway. I am constantly attacked for “spoiling” my son, and “giving him his way” but no one has seen just how much progress and how DIFFICULT it is for my son to do something as SIMPLE as sitting for a hair cut, or not having school because it’s a federal holiday ( here in the U.S ). Explaining that he is NOT spoiled and I am NOT feeding “the monster” by giving into him because he appears to be ungrateful for the donut I got it, and he’s screaming because there are sprinkles on the donut when he used his words , or kept himself together at a time he would normally break down. Those are huge things in his life…not many understand, and I have found that not many even care. but we as mothers ( and some dads too! ) will always realize it and be EXPERTS on our childrens behaivors and challenges they face through life. So Thank you!

  5. Jessica
    3rd October 2016 / 12:52 pm

    When I saw the title I was sure I was going to read this and write you a firm, yet educational comment, but as I read I see the title can draw people in to read and see the point you are getting across. Very beautifully written. I experience this everyday with my son who is 4 and on the spectrum. I will share this blog, and hopefully people who need to learn a few things will actually read it and maybe understand a little better.. Great writing, very well put, well done.

  6. 3rd October 2016 / 1:46 pm

    This is an incredible post. Thank you so much for sharing your experiences. Everyone should read this post. You sound like an incredible mum with a wonderful little boy. #KCACOLS

  7. 3rd October 2016 / 1:52 pm

    great reminder that you never know what is going on in somebody else’s life and that we shouldn’t be quick to judgement. Great post #bigpinklink

  8. 3rd October 2016 / 2:08 pm

    I remember you writing about leaving his cup behind. It’s heartbreaking that everything is so difficult for him but I don’t judge. Not because I am perfect and I don’t have an autistic child but I do know how hard it is to be a parent. Most of us are trying to do our best, to raise and nurture our children.

  9. Hp
    3rd October 2016 / 2:25 pm

    Been there done that do many times , my son is now 14 and we can still have this now along with self harming the constant I’m not good enough, he’s much stronger now the battles harder but still just the same . I was diagnosed with cancer last year you can imagine how that went down , but what I wanted to say was cancer for me is a breeze compared to Autisum , unless you live it you have no idea . Much love to you xxx

  10. 3rd October 2016 / 4:17 pm

    I never ever judge any parent now – especially not when im just getting a glimpse of them in the park or shops. my son has ASD and we have had plenty of looks. Ive got to the stage where I dont care anymore but its tough to get used to. And yes, you are a great mum #kcacols

  11. 3rd October 2016 / 4:25 pm

    Another brilliant post. You always manage to describe these situations perfectly. X

  12. Angie Watts
    3rd October 2016 / 4:43 pm

    Yes, yes, YES!!! I find that one of the hardest things for me is watching my kiddo fighting so hard against the NEED to do things he knows he’s not supposed to. Mostly it’s breaking things. Not because he’s destructive but because he likes the sound and the way it looks. We had a neighbor tell us we should move if we cant control him. My kiddo fights so hard every day to be a “good” boy & all the Judgey McJudgesters can take a flying leap! Thank you for sharing this!

  13. 3rd October 2016 / 6:03 pm

    Brilliant post. I absolutely agree no one should be judging anyone else on their parenting styles regardless of the behaviour in the brief moment of time they cross paths

  14. 3rd October 2016 / 6:19 pm

    Sorry forgot to add
    Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday.

  15. Anne Marshall
    3rd October 2016 / 7:30 pm

    Beautiful writing and very moving post. I hope for all the ignorant people judging, there are many more understanding and seeing a strong mother dealing with a challenging situation and admiring you. Xx #kcacols

  16. 3rd October 2016 / 8:17 pm

    I will admit I had those thoughts before I became a parent, and possibly whilst I was still in the baby stages. But not anymore! I see things very differently now. Neither of my girls have autism so it isn’t an angle I fully understand but I know it makes things harder, tantrums more difficult to resolve, days harder to plan. The last thing you need is people calling these things excuses to be an arsehole, or labelling your child as naughty.
    #BigPinkLink

  17. Emma
    3rd October 2016 / 9:13 pm

    Great post. What really hurts though are those thoughts and judgemenus on my parenting coming from family!!

  18. 3rd October 2016 / 9:51 pm

    My teenage son criticises my parenting of his little brother all the time. It is so frustrating. Once he told me that if I ignored Adam he would stop struggling with things. I asked if maybe he thought Adam would start walking if I took his wheelchair away!

    It is really hard for people to understand sometimes but it is often harder to deal with comments then it is to manage whatever situation is happening. #bigpinklink

  19. 4th October 2016 / 9:58 am

    So moving. My son has SPD and so much of this resonates with me. His suffering is my biggest and most profound pain, and I spend my days doing everything I can to minimise the effects the world has on him. Thank you for these beautiful words of solidarity. X

  20. 4th October 2016 / 10:29 am

    I love this post! It brought a tear to my eye just thinking about what we have to deal with but we just get on with it. I even find myself saying to people, it’s not my parenting…just look at my other kids, they are well behaved. How awful is that? We should not be made to feel guilty because our children are struggling with life, people should appreciate just how awesome we autism parents are. xx

  21. 4th October 2016 / 11:39 am

    It’s amazing to read stories like these, it gives such an insight into autism.
    And yes, before children I had the same thoughts, but the more I read and the more I learn from my children, the more I understand #KCACOLS

  22. 4th October 2016 / 1:40 pm

    It is true that it is easy to judge if you don’t know the context of the situation and too many of us do it readily and too easily. I am glad you wrote this post and shared this with #bigpinklink

  23. Ned
    4th October 2016 / 4:26 pm

    A beautiful post. Yes, people don’t understand because they never see the whole story, do they? I’m an adult with Aspergers, and while I’ve ‘grown up’ (whatever that is), I still have moments like this, when something, that to others seems so infinitely small, will set me off. While I’ve learned various coping strategies, and rarely get to the point of rage anymore, I still die inside, like a thousand knives have been thrust into me. Outsiders may wonder, “What’s the big deal?” But it is a big deal for me. It’s always a big deal for me.

  24. Kate
    4th October 2016 / 7:58 pm

    No. I have not judged as you suggest I might have. I am on the spectrum and have 2 boys on the spectrum. I have always understood. I grew up with those same feelings in every cell. I just didn’t have a mum (or dad) like you. So, yes, some of us inherently get it. I am the same woman who asks if I can get you something to eat or drink, or offers you my chair. Or pushes people away to get you outside.

    • Someone's Mum
      4th October 2016 / 8:02 pm

      That’s wonderful- and thank you. My post was worded to grab the attention of the majority who don’t get it though. It was not meant to imply any judgement on those who do. Thanks for reading.

  25. Edel Abberton
    4th October 2016 / 11:23 pm

    Fantastic post.who captured so eloquently all the pain we feel for our kids on the spectrum because someone takes a view on their behaviour in that split second as who they are as a person, judges them unfairly and our ability to parent our child/children.When they don’t see the little triumphs and all our wonderful kids go through each day without complaint. They cope with so much in a world who rather they conform and not be who they are , rather than facing that a person who is different needs to be supported loved and accepted for who they are, and valued for that difference to bring forth the beautiful colours , light and prospective they bring to everyone. Difference is diversity , it makes life truly lived

  26. Allan
    4th October 2016 / 11:46 pm

    I am on ‘the spectrum’ as it were. as are my mum and dad but most severely was my brother who passed away on the 27th Oct 2011. Aged 30, 7 days before his 31st birthday.

    I just want to say that i personaly never cared or gave the small minded neanderthals who have no idea what’s going on outside there own little cloudy bubble of ignorance the satisfaction. One of these reasons is because for all we see as the handholders of those beautiful ‘disturbers of the peace’ pales into insignificance when we compare it to the frustration and hurt that ones such as my brother suffered every time he couldn’t cope with overwhelming situations or the things we take for granted like wanting to marry the girl at college! And even just ever day life. And as for understanding. I don’t think any of us ever can Fully understand, just like the man with one eye doesn’t know how it feels to be blind…

    Please dont take offence These are just my thoughts. Quite raw and off the cuff

    • Tina Jayne
      2nd November 2016 / 9:33 pm

      “the small minded neanderthals who have no idea what’s going on outside there own little cloudy bubble”

      Allan, that is the best description of the passive sheep AKA the “normals” I’ve ever read!! If my now 8 year old feisty little autistic son turns out to be half as perceptive as you I will be immensely proud!!

      • Rex
        7th July 2017 / 2:40 pm

        Aren’t you doing the very same thing you are accusing others of doing?

        You don’t know those other people? You don’t know their stories. Their suffering.

        Maybe they’re going through something traumatic as well, and the screaming is triggering emotions from within them?

        That you judge every bit as harshly as those you claim to judge you, while offering exactly ZERO empathy for what they may be going through, is also illuminating, and may be why others think these negative things.

        Understanding and empathy are a two-way street, you so many of us think it’s something that only we are entitled to.

        • Someone's Mum
          7th July 2017 / 2:51 pm

          Sorry Rex are you talking to me or to the people above who you have replied to above?

          My post is a direct response to people who have said that there is no such thing as autism and and that it is just an excuse for arseholes to behave like arseholes

          These are people who have made comments to me directly which have implied my parenting is to ‘blame’ and that my son would behave better if I controlled him. They are people who have rolled their eyes at me when I try to explain.

          I am extremely empathetic and open-minded but I am afraid when someone goes out of their way to make you feel bad, with no attempt to explain beyond them just being ignorant and misinformed, then it is they who have shut off a two-way street of empathy and understanding, not me.

          • Rex
            8th July 2017 / 3:43 am

            Forgive me, this was not directed at you personally.

            It was a reply to comments like:


            “the small minded neanderthals who have no idea what’s going on outside there own little cloudy bubble”

            ‘that is the best description of the passive sheep AKA the “normals” I’ve ever read!!’

            People are Neanderthals or passive sheep if they react negatively to sudden tantrum outbursts?

            I disagree. Tantrums are distressing to people who are not used to seeing them. They are shocking on some level, and the human brain reacts to these events by pouring cortisol into the bloodstream. It’s quite unpleasant for them as well. But instead of empathizing with this, we call them names and pretend to be superior to them?

            What if one of the “neanderthals” is having a migraine? Or just lost their job? Or is deeply troubled about something else?

            I don’t see one iota of concern about this. Only “people should empathize with ME and MY CHILD or they are bad, terrible, etc, etc”

            You have to admit, this is a rather narciccistic view of the world, which could fuel speculation about the lack of empathy of the parent being transferred to the child.

            We tend to get the understanding that we give others (although not always I’ll concede), and if one is inconsiderate of those around them, it’s no surprise that they would be treated in turn.

            Just my 2 cents, and it’s worth every penny.

  27. 5th October 2016 / 3:49 am

    amazing article….i am a father of now 23 yrs autistic daughter and always believed my daughter was most well behaved child.Thank you for confirming my belief…

  28. DarthKasei
    5th October 2016 / 8:57 am

    As I read the muffin story I couldn’t help but think back to a similar incident, I recently had to contend with a group of judgemental strangers at the local country park cafe when my son had a meltdown upon dicovering they no longer had a slush puppy machine, I had promised him good behaviour would result in a slushy, and the missing machine was a hammer blow to him that he could not cope with, as he started screaming and refusing to move they all just stood there tutting and shaking there heads while I tried to calm him, the only solution I had open to me was to bodily lift him put him in the car and drive 6 miles to a local petrol station that had a slushy machine. For the next 3 days he talked about nothing other than the fact that the cafe no longer had the machine, to others the loss of that machine is nothing, to him the natural order of the universe was turned on it’s head.

  29. 5th October 2016 / 12:28 pm

    How beautifully expressed. I have been in your shoes many times with three of my four kids who have autism. Having lived with it for over 16 years now, though, I can see that there is an awareness in the community that did not exist when our first child was diagnosed, and a slow understanding of some of the common elements of ASD. Yes, it is slow, and there are many misunderstandings and judgements still being made. But pieces like yours help to raise awareness. Thank you for your eloquence.

  30. Aarti
    5th October 2016 / 2:23 pm

    We are parents to a 23 year old autistic young girl and not a day passes by when we are not proud of her. She has her moments but then who doesn’t? Her love, her selflessness, her patience, her honesty are characteristics that we cherish in our daughter. She is a gift from God, one who blesses our life everyday by her presence.
    Jaspal and Aarti

  31. Danny
    5th October 2016 / 11:48 pm

    Lovely post and very well explained/written. Touched many deep nerves by describing very close the relationships with my 3 little ones and the common misunderstandings between ‘spoilt’ and ‘terrified/distraught’

  32. 6th October 2016 / 5:12 am

    Oh mama. I absolutely love this. So raw, so open and true. Absolutely and beautifully honest. Posts like this are so NECESSARY to get through to the people who just don’t understand. I will admit, I’m definitely guilty of judging other parents. It’s like it’s a reflex or something. But, then I’ve started asking myself what I would want in her situation. Sometimes, it can mean the world to stop and just remind that mom that “you’re doing a good job.” Thank you for sharing! <3 #KCACOLS

  33. 7th October 2016 / 2:00 pm

    Love this! So honest, open and emotional. I can’t stand it when people look at a child and his/her mother and judge when they don’t know the whole picture. Well written x #KCACOLS

  34. Brit
    7th October 2016 / 4:08 pm

    Thank you, SO MUCH for sharing. I see my son in so much of your story.

  35. 8th October 2016 / 5:12 am

    Amazing post, one so many people need to read. It is so easy to judge in a moment with almost no information, and so many people do it, I am sure I have. And I am sorry, on behalf of me and every other Mom, Parent, or random stranger who has shot you that look, you are a GOOD MOM, and he is a GOOD BOY, don’t ever let anyone take that truth from you #KCACOLS

  36. 8th October 2016 / 6:46 am

    Hi Danielle, if only the world were a more tolerant and less judgmental place! My son has spent his life being judged and labeled by ignorant people. there was a point when I was accused by members of my family of mollycoddling my son, which was why he was like he was. After years of looking for answers, it turned out my son has Aspergers with what I call excess baggage.

    All parents have enough on their plates without having to deal with judgemental ignoranuses. And I have been known to offer a week in my shoes to people who think they know, but really know nothing.

    Unfortunately, the judging will go on, but know that you are not alone!

    #BigPinkLink

  37. 8th October 2016 / 8:46 am

    Beautifully written . I do not have an autistic child but I have worked with autistic adults and recognise the truth in what you say.

  38. 10th October 2016 / 8:59 am

    This post has brought a tear to my eye. I think you are amazing parent, to understand and nurture your little boy. I’m first to admit I don’t have a clue when it comes to autism but always find your posts inspiring and I am sure they help a lot of people. Stopping by from #BigPinkLink xx

  39. 14th October 2016 / 12:04 pm

    Yeah, I see the looks, the side glances. I was buying a new case for my iPhone but it was mislabeled on the shelf. I was hold/hug/restraining my son so he wouldn’t bolt, and trying to explain that I thought the case was wrong and wouldn’t fit. My son was struggling, and it looks like i’m being a horribly aggressive parent, and she was looking at me with obvious disapproval. What she didn’t know is my son is a bolter, and he’s getting fast. If I let go of him he’s off running away from me. He won’t just stand and wait beside me. I ignored her judging facial expressions, but I do get that heavy “people just don’t understand me and my son” feeling. That feeling sucks. I know they are either thinking I’M a bad father or my son is a little brat. My son is a very gentle loving boy, and I do my very best.

    • Tina Jayne
      2nd November 2016 / 9:25 pm

      No you don’t do your best! You do more than you ever thought you were capable of! Please see my reply to this post (Tina Jayne) that explains what I mean. Those parents that judge us? They don’t do half of what we do, because they don’t have to. So thank heavens for platforms like this where we read stuff that mirrors our lives, and we know there are SOME people out there who understand x

  40. 16th October 2016 / 10:26 am

    Understand this completely in my son’s very literal world. When I have said we are going somewhere or doing something and then it hasn’t happened. I have been that parent who has judged and sure I still do. I try and not be take any notice of those around me and what they think but it is difficult. #SpectrumSunday

  41. 16th October 2016 / 11:26 am

    I’m sure I used to be judgey way back when. Now I know oh so differently! I always try to accept there may be a good reason for a child’s behaviour and that they’re not just being a brat. After all, it’s usually my child! #spectrumsunday

  42. 16th October 2016 / 1:10 pm

    yes, so exactly how it is! and yes, as difficult to say ‘I’m a good mum’ as it is to shout ‘help!!’

  43. 16th October 2016 / 4:39 pm

    Amazing post! Lots of families will be able to relate to this. People never see the good bits that have been so hard to win x

  44. 17th October 2016 / 10:18 am

    You’re an amazing mum. Once upon a time I probably would have raised an eyebrow but I’m infinitely less judgmental of other parents and other people in general since having my autistic boys.

    I remember trying to drag Tyger out of a pet shop when he’d spotted a Henry Hoover in a cupboard out the back. I’m sure other people would have thought he was some ‘naughty’ child who wanted to run around in the staff-only areas of the shop but Henry Hoover was his special interest at the time. Seeing that vacuum cleaner there was like seeing Santa for most kids. He was desperate to touch it.

    #SpectrumSunday

  45. Tina Jayne
    20th October 2016 / 2:07 am

    Like many others who have read this and agreed, those words could have come from me, because I too have an Autistic son and face those same challenges daily. And I am so grateful for the many positive comments from people who don’t have Autism in their lives, that they can empathise and appreciate why it’s so different for us. I just want to add something that you may have previously addressed, but for those of you reading this that don’t have an Autistic child, even if you appreciate the day to day difficulties we face, consider this also: that while we are dealing with the unpredictable meltdowns, the disapproving stares, the heartbreak of seeing our child in distress, we are also constantly fearful and anxious about their future, what will become of them as they age, who will look after them when we, their parents, are dead? For me that is the most distressing, heartbreaking aspect of my child’s condition, and it haunts me every minute of every day. So that’s my baseline, that’s my constant state of mind, and then I love and try to manage my beloved boy through these daily traumas, when he lashes out at me through frustration and then beats himself up with remorse….and then I am faced with the judgemental looks, snipey comments and general lack of understanding. Even from my own family. Well you know what? I am climbing mountains every day that most people cannot even imagine. I am Superwoman. But I don’t feel like Superwoman when I’m on my knees in a supermarket aisle trying to contain my distressed child and beating myself up about the red marks I’ve caused on his arms whilst trying to stop him hurting himself. Then, I feel like the terrible parent people imagine me to be. But I’m not, so please, show a little empathy and dont be so quick to judge.

  46. 20th October 2016 / 11:10 am

    My heart goes out to you, such a beautiful and well written piece, everyone needs to see this X #spectrumsunday

  47. 23rd October 2016 / 9:39 am

    I hope this is shared far and wide so others can understand the physical pain our kids feel when things change. No, they are not naughty and no, we are not bad parents. Another fabulous post x

  48. 23rd October 2016 / 7:50 pm

    Made me feel sad reading this as I’ve been that “bad parent” so many times. Had someone suggest that perhaps my son just needs some love from a very helpful lady in a supermarket plus the endless looks and tutts. Eurgh how dare they?!

  49. ML
    2nd November 2016 / 1:19 pm

    Thank you for writing this. You have expressed perfectly what probably a lot of parents wish they could.

  50. 7th November 2016 / 6:40 am

    What a wonderful post and I really do understand. We are going through a diagnosis process for our son and even though his behaviour only happens pretty much at home at the moment, I have to constantly reassure myself that I am not a bad parent. People are so quick to judge but you are right, we shouldn’t because we never really know what is going on

  51. Laura Pritchard
    5th December 2016 / 4:22 pm

    This is the very first time I feel like I really get what Autism is. I’ve heard it explained a thousand times, but a small part of me (as you say) deep down felt they were just being naughty…even though, rationally, I knew that wasn’t true. Easy to feel that when I have 2 kids without Autism. But this article really got me. I never imagined it as a pain that won’t stop. Thank you!

  52. 7th December 2016 / 3:52 pm

    Thank you for this, I needed to read this this morning. It was a rough morning, with my 4 yr old autistic sweet little girl. She wanted the back seat of the bus but she plays with the emergency door so she is not allowed to sit there anymore and it was chaos to get her to move. I felt like no one understood, even the special needs bus driver. I felt alone and my muscles ached from trying to lift my precious little girl and make her understand that another seat was just as good. I finally got her to calm down. She’s the sweetest thing but sometimes, well, you know, you’ve been there. It would mean so much if others would say something nice, or help in some way, or even an empathetic smile would be so helpful. I wish more people would understand what we go through with our special children. I hope and pray that someday we won’t have to explain why our children do what they do, but rather get a helping hand, or a kind smile instead of a judgmental grunt or groan.

  53. 20th December 2016 / 9:40 am

    As a parent of an ASD/SPD child, I can identify with everything you say here. You just have to ignore the indignant reactions of strangers and do the best you can for your child in that situation. I’ll openly admit that I used to be embarressed but now I have hardened up and it is the judgemental people that should be embarressed by their lack of understanding. Keep at it, keep smiling, it is worth it, even on the toughest of days! x

  54. 8th January 2017 / 9:46 am

    Sending love, been there so many times, oh so very many times. You are the best mum, and he is the best boy. Everyone else can just take a running jump;-)

  55. 8th January 2017 / 4:04 pm

    You write so beautifully.

    I don’t even have an autistic child but still experience a few of these issues when things don’t quite the way my son expected. Motherhood is hard!

  56. 15th January 2017 / 8:55 pm

    I’m willing to bet that you are probably one of the best mum’s ever because you always have to anticipate what might go wrong. Well done, it looks like you’re doing an amazing job

  57. 12th February 2017 / 11:07 pm

    What a beautiful article. I am a SENCO and every time I hear or see those behaviours you have described I always think to myself ‘they might have special needs’. I have even trained my husband to think this way as he used to look in the supermarket or the sandwich shop. But there was a time, I will admit, when I didn’t think this. I am in awe of parents of children with special needs. You do an amazing job.

  58. 5th March 2017 / 7:56 pm

    As the mom of 2 boys who both had communication impairments, I feel what you are saying, and why I wrote this page of how to answer “what’s wrong with him?

  59. Andrea
    6th March 2017 / 1:45 pm

    Yes. Just yes. Thank you for sharing.

  60. Karen
    8th March 2017 / 9:00 am

    Hi. My daughter had definite traits of HFA – we wait to see if she will choose to seek a diagnosis and have spoken to her about it etc. Just wanted to mention the times we waver in our own beliefs/knowledge about our children and judge ourselves! I think especially with articulate HFA. Other people or just our own prior experiences with neuro-typical siblings make us doubt and we pause and consider what we are doing…. “have we got it right? Is this behaviour deliberate? Are we right to make reasonable adjustments?” (E.g. Taking daughter to school rather than her getting school bus) It can be a tricky path at times and one we tread carefully. We should remember that most of us do our very best most of the time and we should forgive ourselves when we get it wrong!

  61. 8th March 2017 / 7:12 pm

    I have shared this with my mother. It is so reflective of some of the grief she has been given raising my brother who has autism too. Very interesting read

  62. Jerry
    3rd April 2017 / 11:30 pm

    The next time you have doubts about blogging…remember this…the more I read the more I learn…and the less judgmental I become…

  63. Tommy Williams
    3rd May 2017 / 10:57 pm

    As someone who has Asperger Syndrome, I can relate to how this kid feels, I haven’t screamed exactly… but I have done things similar, I can’t leave the house without wearing a Hoodie and a rucksack on my back as it doesn’t feel right at all, but my Mum wouldn’t believe me, in fact she refused to let me leave the house to go to College if I was wearing a hoodie, her reasoning was because it was sunny; however three hours later it was pouring down with rain… I didn’t even get a full on apology, just my Dad calling me saying to make my way down to Subway where he was there with a Hoodie for me at a Car Park halfway down, and my Mum responded when I came home saying “I was just thinking about you, I realized it was raining and went “Oh dear,”” but that wasn’t a full-on apology…
    I’ve corrected people for how they mispronounce words and they have a go at me for it, when I say I can’t help it, they just don’t believe me and think I like pissing them off, but I do it out of habit, I see people misspell on social media websites like Facebook, Twitter and YouTube and I just want to correct them so badly, I literally twitch at the errors.
    Whenever I walk into my Town, or wait for the bus, I always put on my headphones, the only time I take them off is when someone is talking to me, or when I talk to Staff at a shop, while no-one has questioned me about this, they just think I’m antisocial, when that’s not the case, the music calms me, I like to think creatively and when I listen to music, I just picture myself in a world where everything I create becomes a reality, it helps me get through the day all the time.
    People say I use my disability as a way to justify my actions, but I’ve rarely brought up my disability out of fear of how they react. Yeah, I’ve been bullied because of my disability, but that’s because no-one understands what it is and thinks it’s an infectious virus.

    What this Mum is doing, is brilliant, it shows that she has learnt the understand how her son would react and hasn’t snapped at him for his actions, nor has she tried to tell him to shut up or quiet down because they’re in a public place, she deserves way more respect for what she’s doing and I hope other parents will learn and understand their Children if they have Autism also 🙂

    I’m sorry for essentially making this comment all about me… I’ve just not had the chance to talk about it, and considering this is relevant, I thought it would be good to type it in to see how others deal with their Asperger Syndrome and what they do.

    • Someone's Mum
      4th May 2017 / 12:40 pm

      Thank you so much for taking the time to share your experience and for your kind words. I love to hear from adults with autism as my son is so very small and it is not always easy to figure out how things may feel for him. I am so sorry you had such difficult experiences with your own parents. Unfortunately, there are sill those who do not understand autism and Asperger’s today, even when their children are diagnosed. It is a steep learning curve. If parents mistake some behaviours for just bad behaviour or overreacting then it can be really harmful, though they may not mean it to be. That is why I think it is so important to be open and honest and share information, from all perspectives – so thank you so much for doing that for me today. I wish you well.

  64. Autumn
    4th May 2017 / 8:02 am

    I know how you feel. I have 2 children that way. I get embarrassed how they act. Because how others act. They really don’t realize what is happening.

  65. Sue Goldman
    5th May 2017 / 6:28 pm

    The NAS used to produce little cards with a brief, positive explanation of ASD and links to more info. I’m not sure if they still do, but it would be easy to tailor make some with whatever words you feel are right for you. I would hand them over to the judgey people with a big smile and a “Thank you for your understanding”. It helped.

  66. Marek Wilk
    22nd July 2017 / 10:36 pm

    All the behaviours you described – I know them very well from my own childhood. And I also remember yearning for physically challenging activities which were denied me on the grounds of my having asthma and allergies (my mother – most probably an aspie herself – was somehow oblivious to the fact that I would run with other kids like crazy with no symptoms at all), and yearning for an emotionally neutral and decisive father (my father is an artist, and autistic himself, with narcissistic emotional display – I’ll come back to this later). I wanted to be heard out intellectually, but most of the time my adult comments were not heard, and I was insistently expected to behave and talk childishly, which left me severely frustrated and morbig for weeks on end.

    I suffered from having to learn the slow way, like other kids at school. The resulting boredom would literally kill me – leaving me lifeless and depressed for whole days. I was especially interested in music (specifically vocals, keys, and drums) as well as dancing (which to me came so naturally I responded to seeing dancing figures, whether on TV or live, at such a visceral level that I wouldn’t even know what they were doing was called dance – my whole body and mind were that excited). Unfortunately, my depressed and sexist mother and grandmother (as well as other authority figures in my early environment) punished me not only for dancing, but even for single slight displays of graceful movement, which they (predominantly married women) saw as girlish and not becoming of a boy. I saw, and felt, it as an attack on my very vitality (movement was on my mind all the time, and I automatically imagined every system about which I learned at school, whether chemical, mathematical, biological or geological, as flow). But I warmed up to school subjects and I’d get passionate about pretty much every thing (though I loved languages the most – espiecially for the sound, but also, as I realized later in life, for their being somewhat exotic objects to me, and secondary to life).

    One thing I can definitely, after years of turning the matter in my head, connect with my sensory sensitivity and excitability is being bathed in hot water as a child, and having to accomodate to too hot and stuffy air in winter – it made me sluggish and restless, whereas cold to moderate room temperatures were soothing to me. Another thing which wrought havoc on my system was having to eat early in the morning within less than one hour from wake up – I would rarely feel hungry before 3 hours after wake up.

    I didn’t like being touched on the top of my skull, kissed on the forehead or on the cheeks by family members, and I remember responding fiercely at being scolded for avoiding it. I’d get angry when adults laughed when I demanded they ask children to do things – the way they asked each other to do stuff (instead of ordering us to do them). I also remember being embarrassed for the men when they behaved chauvinistically around women, or spoke disparagingly of them. All forms of unfair, unreasonable, and unfettered behaviour were acutely displeasing to me, and sometimes I’d lash out at people who displayed it, very vehemently, with no regard for age or authority.

    I’d rage whenever adults laughed at me for behaving in an adult way, bc I spoke to them as another human, and not as a child at all, and I expected them to react to the content and not the form of my message. In fact, I can say with full consciousness there were moments when I’d slip into childish mode quite abruptly, as if I changed seats on an airplane or moved between being an actor and a member of the audience. There were moments I’d identify primarily as an adult mind within a child’s body, but when I acted in an unpremeditated way (as when laughing, singing, or dancing), I was a boy alright.

    Being squeezed at the sides and even crushed in my mothers arms felt good (until I developed fear of it as a result of her violent and erratic behaviour). I hated touch that was too soft bc it’d send flashes throughout my body, and I was ticklish into my early thirties (massage and exercise, especially strengthening the core, helped to diminish it).

    As for the facial expressions recognition, in my case it was not so much that I didn’t understand expressions as such, more than it was their inaproppriateness – the expressions that accompanied declarations of emotion and intent were, to my mind, studied, artificial and exaggerated, in short – unnatural. But I also saw them as unbecoming, ugly, stupid and insincere – most of the time. Watching the social drama was unbearable at times because I could see people were hiding things from each other, or that they would speak in nice tones while in fact having mean underhanded intentions. When I’d speak out about it, I’d be invariably severly chastised and accused of being an arrogant and unbehaved kid (alas, I could see through my accusers sense of horror at my acute awareness just as easily). Of course, I wasn’t always right, bc I was blind to sense of humour most of the time. I only laughed at absurd jokes, puns, etc. On the other hand, like anyone I could tell when people were being mean telling jokes. Only I was

    By way of clarification, I was born in Poland, in late 70s, and grew up in the corrupt social reality of the last years of the Communist era, in a poor, shabby neighbourhood of Kraków (then the 3rd largest city with the population of about 500,000). Emotional coldness and / or lightness, so untypical of the war- and early Communist terror-traumatized, post-feudalist Polish society, was always prefered with me. I was often acccused of being heartless (or a haughty aristocrat) only because I acted and felt peaceful and because I gave people around me advice on how to solve the communcation clashes that caused emotional upheaval in them, and on how to avoid distress in the future, in a collected, calm manner (the very thing which in an adult facing an angry kid, a violent attacker, or a distressed patient would be seen as perfectly proper). What I in fact felt at such occasions was boundless sympathy and compassion.

    Being scolded for behaviours over which I had no control was to me an unnecessary cruelty which could have been avoided if only the adults doing the scolding would pay more attention to me (both studying my behaviour and listening to what I had to say about my difficulties – as I was their keenest observer myself), and which made me engange in the unwanted behaviours even more – out of stress. Very often the haranguer would vent their own personal dislike and frustration on me, which I saw as totally unacceptable and was outspoken about (until silenced with repeated physical violence, threats and insults).

    Having been repeatedly faced with accusations of heartlessness and threatened and denigrated for behaving calmly, I at one point decided to learn facial and bodily expressions that would be more suitable in the eyes of people around me. I did a bad job of it, and it ended in even more severe accusations on the part of my mother – for being ‘unnatural’, and ‘acting’. Those left me perplexed, confused, and subconsciously upset and terrified for days on end. Because I didn’t feel the emotions the majority of people around me displayed for reasons which in me would only provoke an intellectual, problem-solving mode, I thought (in my childish stupidity) that maybe trying to induce those emotions in myself would make my display of them more natural, which, inevitably!, led me to getting more and more entangled in false emoting, and vulnerable to emotional enmenmeshment with my parents, to the extent that I forgot who I was and ended up nearly entirely dissociated from my real emotions and my body (typically for an aspie, I had a hard time feeling and recognizing my emotions in the first place). I believe that’s exactly how my father learned his narcissistic emotional display.

    When I heard the word cosmopolitan explained to me (at age 8 or 9), I immediately responded, “That’s me! I’d feel at home everywhere.” And sure I did – wherever I went I was receptive towards local cultures (which doesn’t mean accepting of local stupidities of custom and prejudices), even if homesick.

    I can relate to Tommy Williams’s story about his putting on a hoodie on a sunny day – I often felt strong intuitive urges to do or not do certain things, and were left with no apologies from those who stopped me or told me it was a stupid thing to do when turned out to be right later on. I remember telling people intution was a rational thing (only expressing itself subconsciously), and women would feel offended when I told them there’s nothing inherently feminine about it (I couldn’t give a reason but I later realized it’s violence and aggresive use of formal reasoning that blunts intution in men). Generally, the whole notion of masculine and feminine behaviours was stupid and backward to me ever since I can remember – I saw it as creating unnecessary divisions between couples and putting an unnecessary social and cognitive strain on people in general. A sort of war, and to me war, and even competitive debate, was intrinsically stupid.

    Again, I can’t emphasize how socially and emotionally crippling was for me the lack of an adult-acting, compassionate, detached male role model – someone to give me responsibilities, teach me manners and self-possession through example, and above all, supply me with graded physical, social and intellectual challenges, so that I could control my violence and aggression in an intelligent manner and enter life among people without losing my dignity and individuality.

    I wrote so much about myself bc I believe personal perspective helps to understand things by making the common dynamics stand out in difference. I hope this helps you in some way.

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