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. I have wondered whether autism is an excuse.
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. They have wondered whether my child is autistic or a spoiled brat.
‘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. Autism or spoiled. 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!”
Autism or 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 does not deserve for anyone to question: autism or spoiled ? 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, if you think autism is an excuse 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 or spoiled: an excuse for bad parenting?
Yes. So much yes. People don’t get it. Thanks for writing this.
Thanks so much for stopping by to comment. So glad you think it will be helpful. xx
Hello Danielle ☺
I just wanted to issue a huge apology for my statements the other day and wish to take back what was said based upon a lot of self reflection and the huge backlash I seen on your Facebook page. A lot of what I said was very presumptuous, hurtful and pretty downright vile and I am so ashamed of my behaviour towards you, your child and others on this chat forum and their children.
If any genuine autistic people have unfortunately has to see it all, then please do not let it year you down or make you paranoid/anxious around other people. It was all said and now I have realised it was very off mark and out of line in so many ways.
Please can I ask that the comments I posted are removed immediately and for the Facebook posting and over 200 comments to be deleted now that I have sincerely dpologied and done what I can to try and resolve this. That would be very much appreciated! All the best 😚😃
Many thanks,
Sarah
From what I have seen on Facebook you worship and love your children a lot and are also taking great pride in them and I seriously misjudged you as a person and parent. For that also I must not stress enough how sorry I am! I hope you can find it in yourself to forgive and forget but if you struggle with that then I will totally understand. I wish your son and daughter the best of luck through school and in adulthood. 😀☺
X
I think the post should remain on Facebook .I think it is helpful for parents of children with asd (like myself also ) to be able to reflect upon comments posted and also for them to remain for others to read and learn from .
Look folks stop feeling bad. I am a retired special education who has dealt with all types of learning disabilities and behavioral issues including autism. The one Thing I know for sure that is indisputable is that there are children who have legit issues they need help and guidance to overcome or learn to control the best they can to function in society. And then there are brats. Often they are mixed together
Hello Sarah.
Thanks ever so much for coming back and for taking the time to learn more about me and apologise. If this experience has helped to change your opinion then I am very glad that all this happened.
Honestly though, I am not sure what to do with regards to removing the posts. I have written this on my page:
Some of you will have seen the awful comment that I received on an older blog post a few days ago.
After a bit of back and forth, I have received an apology from the poster and a request to take the comment, and the Facebook post in relation to it, down.
I am not sure what to do right now – on the one hand, I appreciate the apology and the idea that someone’s view may have changed is a hugely positive thing. I want to recognise that and respect it.
On the other, removing it and denying that it ever existed is hiding a something that I do not think should be hidden. I feel like this dialogue and the process that happened is something that we can all learn from and removing it seems to stifle that.
I am going to have a think and will let you know.
What do those who commented here think I should do?
***
I am going to have a think and get back to you. Should I decide to remove, I will remove all posts.
Again, thank you for your apology and I will let you know soon.
Hey Danielle 😀
I don’t mean remove it in order to deny it ever existed, that sounds horrible! I mean more because I now am no longer standing by those comments, have learned a big lesson from my actions and how to behave and deal with situations like this from here on and the fact I have apologised and tried to make amends with you and everyone on this thread and on Facebook. Thst’s more what I meant so I’m sorry you got the impression that’s what I meant by it.
From what I have seen on Facebook you worship and love your children a lot and are also taking great pride in them and I seriously misjudged you as a person and parent. For that also I must not stress enough how sorry I am! I hope you can find it in yourself to forgive and forget but if you struggle with that then I will totally understand. I wish your son and daughter the best of luck through school and in adulthood. 😀☺
X
I feel so bad my 8 year old has problems with her anger/emotions she was on a apl on my ipad when I heard her getting angry its one of her triggers but tonight she lost and I ended up really shouting at her 💔 😔 I feel so awful once calm she then said when you shouted you scared me I feel like such a terrible mum its just exhausting.
Her triggers??!!!
Get a grip, stop making excuses, parent and allow her to be a child who needs limits and directions!
Your not fit to be a dad. A proper dad would make the rules. But you are letting your kid be a brat and make the rules. It is people like you that wreck life for others. Unless you live in a cave on your own you have to teach your kid how to behave. I am so sick of everywhere i go, i see brats making life hell for others but mummy just stands there and says: ‘well he has autism, what can i do?”
My answer to her wet question: put the brat over your knee and spank him until he screams
Hi
This is for Danielle and you have my sympathy for the situation you are in but to take one example you cite. Your child is fixated on one cup he’s allowed to scream in the absence of and you do whatever you do and your husband runs around the town frantically searching for similar, do you think that sounds like the only resolution and how did this arise in first place? “Autism” caused him to be able to what, use only one cup? Does the same condition give him the manipulative skills to manage both of you. Your child’s action in this appears to be skilfully directing your and your husbands behaviour and you wonder that some people doubt this is a parenting issue?!!
I am autistic myself, so I know exactly how it feels when things that are familiar are changed. It is about extreme anxiety linked to change, not drinking from one cup. There is not a manipulative bone in my son’s body and I would suggest, unless you are autistic yourself, or have experienced the deep anxiety and pain of an autistic individual you love dealing with a meltdown or shutdown, then you really are in no place to question us.
Well…we found the arse.
YOU ARE RIGHT. The boy was being a total brat and because his mum and dad are lazy parents. I have seen this all too often these days. Funny how we did not see brat behaviour in the olden days. Hmmmm maybe because kids knew they would be whipped or spanked or locked in their bedroom.
Sort your brats out. I am sick of bratty kids hitting my kids, sick of these brats ruining lessons in school, running around in cafes, spitting, pulling things off supermarket shelfs and other bad behaviour. While mum stands there ignoring it or says ‘well he has autism’. No, your child dont have autism or any other -ism because it dont exist. What your child has is a lazy parent. What he needs is a damn good old fashioned spanking until he cant sit down for a week. Administer this in public and he will learn. He will never be a brat again. If he does try to be a brat again then invest in a good belt and let daddy give him a proper thrashing…
Beating children with diminished compasity to regulate or understand is a problem within your own cognitive dissonance. U assume a public thrashing is going to teach cause and effect to children that routinely hit themselves, bash their heads into things,burn themselves pulling food out of a skillit?! If pain was a deterant to such behaviors you’d think a cracked head and burns would teach to not smash your head in or reach in a blazing hot skillit but it doesn’t…it requires a level of aforethought not every individual has. Bratty and yelling..Put tape on your mouth for a few days and see how upset and frustrated u get being nonverbal.. There have always been mentally challenged individuals,the criteria with autism is such a wide spectrum I feel it adds confusion to the level of ability the individual has,for example one person with autism may be able to form relationships, work,talk,drive ect while another is non verbal with more of an infantile ability. You can’t teach an infant by whopping it’s ass no more than u can an individual with an infants mentality.
I will agree that in general many typical able minded kids could benifit from a couple swats and firm talking from both parents. Unfortunatly it seems the new normal is undermining parents from all angles, the other parent,family,school,ect moreless teaching them they don’t have to be accountable..leading to young adults that run from issues instead of taking accountability and learning from it.
People Dont get what exactly? What is it the rest of us need to get? One time my kid was crying in the play park because a bratty boy hit her head like 4 times. So the only thing i need to do is get my own daughter and Why she was not safe because a brat hit her while his mum watched and said ‘he has autism, he cant help it’. Right, so that makes it ok? I dont care what he has got, you dont hit my daughter. You teach your son not to hit or there are consequences. The mum said i was being rude. Ok i walked off but keep a better eye on my daughter….
10 minutes later this boy kicks my daughter because she was sitting on the swing next to him. His mum said ‘oh he likes to have the swing next to him empty because he is autistic’. I could not even be bothered to dignify that crap with a reply. You know what i did? I took the little brat out of the swing, carried him off to a bench, put him over my knee and gave him 20 good spanks. It happened so quick that the mum stood there frozen to the ground. After that the boy behaved. That is all he needed. I did the job his mummy or daddy should have done YEARS ago,
Why people like her breed is a joke to me. It turns out they then go onto have more kids, should not be allowed to.
If you dont parent your kid properly, i will spank them for you.
Are you for real!
I am so glad I found this. It actually made me cry while reading about the incident in the store with him kicking and screaming. Believe me I have been there. People will always judge. But I am not a bad mother and my son is not a spoiled brat either. People need to educate themselves before opening their mouths. Autism is so different for every child too. We’re the parents and we don’t understand most of what goes on inside their heads.
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
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
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!
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.
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
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
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.
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
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
Another brilliant post. You always manage to describe these situations perfectly. X
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!
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
Sorry forgot to add
Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday.
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
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
Great post. What really hurts though are those thoughts and judgemenus on my parenting coming from family!!
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
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
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
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
Great post x Let’s hope we see less judgy faces as awareness about autism spreads.
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
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.
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.
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.
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
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
“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!!
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.
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.
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.
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…
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.
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.
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
Omg where is the sick bucket?! Your daughter like most people who apparently have this so called condition is overly introverted, ignorant and has to always have everything their way or the high way.
It’s time we faced the facts on this, these disabilities autism, aspergers etc are nothing more than a pathetic excuse for children and adults alike to be different and get treated like special snowflakes for it. With proper parenting, no neglect and discipline and of course not giving your kids too many sugary snacks and drinks most behavioural “difficulties” would disappear quickly. More and more parents nowadays are looking for a label to blame behaviour on so that they don’t have to take responsibility and their children can get off with murder! It’s a way of making money and the fact is we have never seen these conditions being proven physically like dementia, schizophrenia and depression for example have been.
To the writer of this article, your son is a pure and simple spoiled little attention seeking brat and sounds like he has no self control or thought for others, he just thinks the world should adjust to him. He clearly has not properly been taught etiquette and manners out in the public eye particularly in shops and restaurants and if he just refused to learn which to me this sounds very much like, you should be showing shame and disgust in taking him out and giving him special treats when he behaves the way he does and giving out punishments like being grounded for a week or two. Got that? Great.
Sarah, it sounds like you weren’t taught manners growing up, neither were you taught respect for other people’s feelings, nor were you taught compassion and empathy. How incredibly rude of you to dismiss other people’s experiences, just because you don’t experience them doesn’t make them untrue. Perhaps you should keep your judgemental and ignorant comments to yourself, because all you are doing is showing the rude and bad mannered person that you are.
Ok so my comment has been put through moderation just like everyone else and has been allowed to be posted like everyone else so obviously that means nothing I have said is unreasonable or disputable? Everyone is entitled to have their points of view and express them how they wish to openly and honestly and because of my own opinions and the way I have been straight to the point about it that means I deserve to be attacked and told I am a horrible person basically.
This is a chat forum and I know my rights so I would suggest everyone chills out a bit and stop getting so on the defensive about it all. I apologise if I came across like I was being ignorant and jumping to conclusions, certainly never had that intention and I just like the rest of you do research and base my opinions on that. Because most people though think the same way as me though and don’t actually have much of an education on what they come out with those who have responded seem to have a certain image in your heads of the way I am without truly knowing me properly.
Just for everyone’s info I am a solicitor so do not for there especially you Roy and call me stupid because if I was I would have not been able to go through 10 years of university and be in the kind of industry I am in and cope with the intense stress of what I do if I was. I have never felt so insulted on the internet on a discussion from not have I ever endured such attacks. Maybe I’ve had lucky escapes or just not enough experience but any of you who think the way you have reacted is smart or the right way well I think that says way more about your levels of intelligence than mine.
Sarah, I pass almost all comments here. That does not mean I condone what they say or am not offended by them. What you wrote was a personal attack on me and the other commenters. You made outrageous assumptions about me and my parenting with next to no knowledge about me. In addition, you wrote absolutely unacceptable things about my entirely innocent five year-old son – who incidentally, has more compassion, empathy and charm in his fingernails than you have displayed on this thread. You cannot attack strangers and their children with such vitriol and not expect to get a violent reaction. There are many kinds of ignorance. Just because a person is educated, it does not mean that they are not ignorant in many other ways. Please think twice before spouting such poisonous and ill-informed views again – on the internet or elsewhere. Your thoughts may be damaging to real people with real feelings and they are entirely unnecessary.
@Someone’s Mum
Well I must have something really wrong with me then because I just don’t understand how the hell it could possibly have come across like that not do I get why it would be seen in such a horrible and vile way at all.
You just passed them and have them contacted people you know and are related to come and attack me I think because it’s too coincidental for as many people as that to come straight on the following day in fact not even that I posted the original comment just after midnight.
I posted the comment on my Facebook page. Feel free to check it out – though I am afraid hundreds of people disagree quite vehemently with you. You called my son a spoiled and selfish brat and said I should be ashamed to let him out in public. And you denied the existence of a very real neurological state and, in fact, the whole of neurodiversity itself. If you cannot work out why people are hurt and offended, I am not sure that there is much else I can say.
Sarah, I don’t actually want you to feel attacked. I’m trying to understand why you’ve written as you have. You’ve mentioned being diagnosed with dyspraxia, and how you didn’t feel the diagnosis was necessary for you. I think you might be making the very common and completely understandable mistake of assuming that everyone’s life is like yours – you managed to get through life without diagnosis, so you assume that everyone with similar difficulties can do it too. But not everyone is like you. Your reaction to being called an idiot also makes me wonder if you’ve maybe had bad experiences in the past of being called stupid? That’s extremely common for kids growing up with dyslexia, dyspraxia, etc., and I’ve met several adults who cope with it by defensively refusing all labels. They feel that the label marks them out as ‘different’, and they’ve had enough of that. If you are in a similar position to them, then I can understand the tone of your comments better, but that still doesn’t make it a good idea for you to take out how you feel about the label by insulting other people’s kids.
Those comments were insulting. If you don’t understand how, just try substituting your name or the name of one of the people you love the most for ‘your son’ or ‘your daughter’. Then you’d have sentences that say, “Sarah is ignorant.” “Sarah is clearly a spoilt attention-seeking little brat.” Then imagine if a complete stranger you’d never met wrote that about you, possibly at a tough time in your life, when you had a lot to cope with. You’re upset that another commenter called you an idiot…but how is that any harsher or more of an attack than the words you’ve used for a five-year-old and a young woman you don’t know? Parents here are often frightened that their kids will be misunderstood and bullied, or that they as parents will be blamed for their parenting skills even when they’re burnt out from trying, so that’s why it generates so much upset.
It’s OK to make mistakes and mess up. We’ve all said and done some crappy judgmental things in our lives that we regret – Someone’s Mum’s whole post is about this! The important thing is to learn from it and do things differently in future.
I have 4 children, all of whom are treated the same way. Yet it is only my son that is diagnosed with autism. He allowed a sugar free lemonade at the weekend, and has few sweets. He is discipled just the same as his sisters. I have known since he was an infant that he was “different”. At only 6 weeks old he hated being cuddled, preferring to be left alone. Now at 8 years old he is a very polite young man but he struggles immensely with certain circumstances stances. It is clearly NOT my parenting or way of disciplining him, or else my 3 daughters would also act the same way.
Research autism and I’m sure you’ll find plenty of evidence for it’s existance.
Funny, my autistic girl doesn’t eat sweets or drink fizzy drinks (only water for her!) and that’s been for 10 years now… her autistic behaviours have not simply disappeared in that time! I think the spoiled little attention seeking brat may be you, Sarah… it’s sad that you think you know it all and that you judge others in this way.
Sarah your words are laughable…educate yourself you fool 😂😂
Glad you haven’t got a child with autism because god help that child!! Autism is not proven??! What??!! But depression is…hahahaha!! You’re hysterical
Get a life and stop writing such shit or go hide in a hole 😂😂😂
Sarah, you are an idiot.
Yes yes yes! Exactly. Poor parenting. Afraid to discipline.
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’
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
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
Thank you, SO MUCH for sharing. I see my son in so much of your story.
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
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
Well to be perfectly honest that is also something that tends to be a factor in a child’s upbringing is going on the other extreme and over parenting, this is where I think so much balance is nowadays lacking in parenting and then their issues are getting labelled as autism, adhd, aspergers syndrome and it really does get to me.
Just so that no one misunderstands, I take this stand, severe autism and so on definitely exists, the level which you can clearly see major differences and can’t be well hidden so to speak and it is quite obvious the child or adult has additional support needs and is disabled intellectually/mentally but all this mild stuff is a load of bollocks!
I am an adult woman with Asperger’s Syndrome. This world for me can be confusing and often very frightening, but my parents gave me some very good principles to navigate by…and one of them is to do my best to be as kind as possible to others even when I disagree with them or don’t understand them. That principle has never failed me yet.
Sarah, your first long comment was so vicious in its tone that at first I thought you must be a troll who didn’t really believe the things she was saying and was just out to hurt people for fun. Maybe you are. But no matter whether you’re sincere in your views or not, someone who acts as you have here is in no place to advise others on what constitutes good parenting. Your comment reads like a shrieking attention-seeking tantrum. It’s spiteful. It’s ignorant. It’s unnecessary. And it was made in response to the mother of an autistic girl listing her daughter’s good qualities and saying that she was glad to have her daughter. If a parent saying that she feels proud of her child for being patient and honest is enough to bring out this sort of bile in you and make you demand a sick bucket, I dread to think what you’re like in other situations.
To all the mothers of autistic children on here who are hurt by that comment: remember that for every judgmental person who doesn’t have a clue about autism who says cutting things to you, there will be autistic adults who recognise that you’re doing a fine job. As an autistic adult, I can’t tell you how much I appreciate my parents for all they did to help me when I was growing up. Your efforts matter, and they do make a difference.
Thank you Vicky for such a considered and insighful comment. I too am so sorry to anyone here who has had to experience the spiteful nature of some of the comments here. Our children are our pride and joy and we will make sure that they grow to be kind and compassionate and make the world a kinder place, not a more spiteful one.
Well Vicky let me just say this, there was an article recently published that the NHS under government new rules will have targets to meet regarding how many people are diagnosed with autism or aspergers. They will have to drastically cut and reduce that number within the next few years and o my those who have very severe symptoms will get diagnosed and the support required. Thst I fully agree with but for others that is very worrying as they will pretty much have to lose their diagnosis and no longer receive any support. That says quite a lot about how seriously these supposed “disabilities” are getting taken if not on the severe end of the spectrum and I would suggest you take a look.
Sarah, that is a money saving exercise and will have an extremely damaging effect on so many young people and their families. You are delighting in human suffering. Please stop digging yourself a hole.
@Someone’s Mum
Look I have recently been diagnosed with dyspraxia which is identical to autism because my pushy new boyfriend was adamant something was wrong as I have alwsys been very sociable and has no problem making friends but can’t keep them going for much longer than a week or two and am very uncoordinated and can struggle with certain every day things like housework (I know a solicitor who has difficulty with social skills and doing very simple every day things). But honestly I think the same of dyspraxia as I do about autism and it gets me very strongly that these labels are being used for someone who is just simply different in personality and being skilled in not the usual areas.
I would really encourage you to embrace any help that comes through this process – and to research how autism in girls and women manifests. Many professionals misdiagnose girls and women because the symptoms are sometimes masked. Go back to those who diagnosed dyspraxia and seek advice and support.
It seems that much of your anger may stem from your own feelings and experiences, based on what you have written here.
That does not excuse attacking people, attacking my darling boy.
But I still hope this is the start of a change for you.
The NHS is facing budget cuts in all areas. A friend of mine had serious brittle asthma that meant she had to use a wheelchair and could rarely leave her house. She received some of the medical supplies she needed from the NHS, but a charity (NARA) gave her extra nebulising equipment because under current government funding policies the NHS couldn’t provide everything she needed. That friend is no longer here. She was found dead in her bed three weeks ago, on 21st December, having suffered a fatal asthma attack in the night. You can’t get more serious than death. Would you look at the NHS’s inability to provide her with all the necessary equipment and say, regarding brittle asthma, “That would say quite a lot about how seriously thus supposed “disability” is being taken”? I doubt it. If you read up on the proposed introduction of quotas for ASD assessment, you will see that they were only proposed, not accepted, and that there was a huge outcry from doctors and other professionals at the very idea of them, because of how damaging they could be to autistic people’s health and wellbeing.
Based on your comments, I don’t think you know much about autism at all. Firstly, the line from ‘mild’ to ‘severe’ isn’t as straightforward as you might think. I have one autistic friend who can’t speak (she communicates through sign language and through a text-to-speech device), and overall she is much more disabled than me – yet there are certain significant problems that I have and she hasn’t. Incontinence, for example. People with autism quite often have impaired sensory processing that means we physically can’t tell when we need to go the toilet – we don’t get the same physical prompts as other people. I’m like that. If you think that I enjoy wetting myself just because I want to be special and get support, I don’t really know what to tell you. It was the source of a lot of bullying when I was young. The same sensory processing problem means I have a poor sense of pain, so I can’t tell even if I’ve injured myself seriously. Once I broke a bone and didn’t notice, which resulted in a complicated surgery, because I tried to go about my day as normal and made the damage worse. This obviously endangers my physical health, and communication problems can make it worse: my doctor knows not to ask me very general questions like “How are you doing?”, because like a lot of autistic people, my brain hyper-focuses on detail and if I get asked a vague general question like that I just freeze, because it’s hard to select the relevant details. It’s like too many cars trying to squeeze onto the same slip road at once. I end up saying ‘Fine’ just because it’s in the social script I’ve been taught, even if I’m not fine. I need more specific questions to help me process the situation. And because I’m very verbal and articulate in other ways, often people don’t pick up on these issues until something bad has happened. This is why problems that might seem subtle on the surface can actually be dangerous.
On the bright side, I have some skills that I doubt I’d have if I weren’t autistic, and through these and the support and encouragement I’ve received throughout my life, I’ve been able to complete my education and find a job I love. I’d like everyone with any kind of disability to be as happy and confident as I feel now, and that means trying to create a kinder and more understanding society, and building other people up rather than tearing them down. Even if your views on autism weren’t so obviously misguided, what possible good could you have expected to achieve through being that vicious? Did you expect the mum whose daughter you insulted to turn round and say, “You’re so right, I see the truth now. I’m no longer grateful to have my daughter, I no longer thinks she’s kind-hearted and patient, I think she’s just ‘overly introverted and ignorant and wants everything her way or the high way’. Thank you so much for letting me know how wrong I was to be proud of her and to think she had anything good going for her?” Of course not. If you post stuff like that you don’t help anyone, so what’s the point?
To return to the friend I mentioned at the beginning of this post, who recently died from asthma…a couple of years ago she got into an upsetting conversation on a public Facebook page. Someone had posted a mocking comment about fat people using wheelchairs. The high dose of steroid drugs that she was on for her asthma and the fact that she couldn’t walk or do any kind of exercise had made her gain a lot of weight. She asked the person to be less judgmental and to remember that overweight wheelchair users might have medical problems he knows nothing about. In reply she got a very thoughtless nasty comment, not that different from yours, telling her to stop making excuses for herself and to start exercising. He knew she could exercise really, because he was asthmatic, and he exercised! Lots of others joined in with the mockery. She was suffering enough as it was, with constant pain, often unable to even take a shower because the difference in air temperature might trigger a fatal attack, and she really didn’t need the criticisms of Internet strangers on top of everything she was dealing with. It doesn’t cost anything to be kind, but spite and nastiness could very easily have a price for someone else. It’s not worth it.
I am so sorry about your friend Vicky. And I am so sorry for every person that has made life harder unnecessarily for you. x
Thanks. It was a hard Christmas for me, but I’m glad that at least she’s no longer in all that pain. She was feeling terrible.
In my own case, I’ve been very lucky – almost all the significant people in my life have been understanding of my difficulties and did their best to help me succeed, so when I do run into misunderstanding, it doesn’t bother me too much. Supportive parents like yourself make all the difference.
Beautifully written . I do not have an autistic child but I have worked with autistic adults and recognise the truth in what you say.
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
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.
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
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
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
yes, so exactly how it is! and yes, as difficult to say ‘I’m a good mum’ as it is to shout ‘help!!’
I read this post last week and was promoted to write a post to teachers to think more carefully about how they communicate and work with parents – will add it to the blog share.
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
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
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.
My heart goes out to you, such a beautiful and well written piece, everyone needs to see this X #spectrumsunday
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
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?!
Thank you for writing this. You have expressed perfectly what probably a lot of parents wish they could.
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
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!
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.
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
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;-)
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!
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
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.
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?
Yes. Just yes. Thank you for sharing.
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!
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
The next time you have doubts about blogging…remember this…the more I read the more I learn…and the less judgmental I become…
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.
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.
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.
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.
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.
Thank you for telling your story, I now feel less alone. What helps me deal with what you and I have lived through, is a realisation, that by experiancing suffering, I am now able to understand and soothe the same pain in others, that it has contributed to ne becoming a proffesional care giver and that the world needs me
Your son sounds amazing – all I saw in that post was love. I’m so sorry some people judge.
This is the most honest, insightful post I have ever read of a child and parent’s experience of autism. It can’t always be easy for you to write so openly, but I think it is a great service to provide a true picture of what autism is. There was a time when the sort of behaviours demonstrated by those who, we now know to be, on the spectrum would have been misguidedly punished, but, thanks to mums like you, those times are changing, thank goodness.
Wow Danielle, such a beautifully written, heartfelt post. I am so sorry that some people clearly display ignorance to Autism. I think honest posts like yours will go a long way towards to changing those views. Keep up the good work x
If a child screams in public, I might be one of the ones casting the sidelong glances, with the pissed-off face, who eventually gets up and leaves, looking angry and probably judgmental. I might have made a comment while I was leaving.
I’m casting the sidelong glances because I’m trying to work out where the sound is coming from when it’s all-encompassing, why it’s happening, and when it might stop. I’m doing it so many times because I can’t easily read your body language or what you might be going to do. I probably look pissed off, and that’s because I feel like knives are stabbing me in the ears and I can’t concentrate on making the right facial expressions. I get up and leave, with my food still on the table or the shirt I was looking at abandoned, because I can’t bear the pain or inability to think any more. I might have been able to get a few words out, if it’s a good day, but because I’m so overwhelmed, I likely haven’t been able to work out how to phrase it correctly – it could have come out as, perhaps, “I can’t bear the noise, I’ll be outside”. I might not have been able to control the volume I said it at. I needed to let the person with me know where I’ve gone and why; this has taken a long time to learn; for many years I would have bolted and hidden somewhere. I’m not angry, except at myself – I’m in pain and need to escape. I’m probably very upset that something unexpected has happened. It might take me an hour to recover. I’m disoriented. I don’t know where I am. I feel sick and I’m shaking. If it’s a bad day, once I’m alone I might be hitting my head or biting my hands to make the feelings go away. I’ve learnt how to to stop myself doing that in public. It takes a lot of self-control. I know it’s not your fault, or the child’s fault. I assume you were doing your best. I think, it’s my fault, there’s something wrong about me, everyone else can manage, why can’t I? If it’s a really bad day, and I was already stressed, I feel I’m a bad person – I try to explain what’s happening to the person who’s with me, but the words won’t come: “I’m a I’m a I’m a I’m a FUCK I’m a I’m a I’m a I’m a FUCK I’m a I’m a I I I I I’m a I’m a I’m a FUCK FUCK I’m a I’m a I’m a FUCK FUCK it’s the it’s the it’s the it’s the it’s the it’s the FUCK” When my thoughts recover, I start thinking more clearly about the situation and how I’ve really hurt someone by acting how I did. I feel terrible and guilty.
I’m not a bad person. I’m autistic too.
Thank ever so much for taking the time to share things from your perspective. I do understand – I am currently undergoing assessment for autism myself. I do know that there are times when a child behaving that way is going to be difficult to cope with. My post is more directed at the people who think autism does not exist. It was inpsired by someone who literally told me that it was “just an excuse” for my child to “misbehave”.
I do always try to give people the benefit of the doubt and understand that there can be things going on in their lives that I cannot know about too.
You should not feel guilty for things that are out of your control. Thanks so much for reading and stopping by.
Oh, no, I’m not arguing with your post at all! I think it’s a very important point to make, and sometimes it’s *really* obvious when people have the attitude you mention.
I guess I’m trying to reassure people to some extent that not everybody who reacts the way I do is judging them – I know it can feel like that.
(And also slightly to defend myself, but that’s human nature :-D)
Thank you for writing the post, and also for replying to my comment and allowing me to clarify!
This made me cry. My son has asd & every line was like a flashback. The worst was in my local shop, almost 10pm & I was desperately searching for an identical copy of Thomas the Tank Engine to replace the one he had rammed so hard into the DVD player it snapped, he wouldnt sleep without watching Thomas 1st. A guy walks up to the stroller holding my now stimming 4 year old, gets to eye level and before I could shout out a warning he reached out and grabbed both sides of the stroller. Que my son melting down, kicking, screaming, the lot. The guy jumped back and I tried to sooth my boy in the only way I knew, but it was too late, he was too far gone and I was quickly & thoroughly headbutted in the face. As i sat on that shop floor cradling my son in my lap, rocking back & forth, trying to sing ‘our’ song through the blood that was free flowing from my nose & lip, this ‘person’ looks me straight in the face & says “Shit girl make that s*****c shut up or dont bring him out in public.” He then made some comment about how he would have terminated such a child. I was 21, sleep deprived, suffering from what I now know was PTSD & my son was, for a very short time at least, a twin. I’m not ashamed to admit I wasnt the only person to go home that night with a bloody nose, courtesy of a tin of beans, I’m only ashamed that I did it in front of my child.
What made it even more unbearable, was the 5 other people in the shop who all saw/heard the encounter and yet said nothing, DID nothing, other than tut at ME or give ME looks of disgust. I make it a point now that, additional needs or not, if I see a parent struggling, I will stop & depending on the situation I will either offer words of encouragement (let them know they are doing great etc) or I will ask if there’s anything I can do to help them. Whether that’s keep people away, act as a human screen to stop the starers or to make assholes back off so that the parent can concentrate on the most important thing, their hurting child.
Well, the alternative is to smack your kids til they learn that repressing themselves is less painful than the smacks… I’m not convinced that this is a bad thing more than the alternative, as it’s one sack of pain versus another… but thanks for trying the non-violent way. My family is into shame, denial, repression and masking. No thanks.
My Mum (arrogantly in the end) tried so hard until everything fell apart then blamed her AS-diagnosed child (now an adult). She still does. She hasn’t told me she loves me for decades. We can’t talk about things. She is likely on the spectrum herself and cannot fathom any alternative to masking and manipulation. I see this replicated in many women I meet, who aren’t ‘out’ as on the spectrum, whether diagnosed or not. I tried to start a dialogue to explain the pitfalls of being closeted (masking) about it, but they arrogantly thought they knew better because I’m not some impressive salesman, and am a bit abrasive in my approach for obvious reasons.
Even Tony Attwood’s son is apparently AS and he (!) didn’t even notice, he was too wrapped-up in his work (a form of selfish egotism, whether beneficial to the world or not).
So, good luck, and better to be judged for what you’re doing and who your son and you are than for failure to mask it. Always remember that. Good luck with coping strategies, they’re the key. I used to be a really fussy eater and now I’m not, for simple example, so it can improve on a practical level.
Waiting on an assessment result, my family say I’m too soft, my 9 year feels overlooked, so so anger when the pre school said bring him for an assessment, father in complete denial, I’m not sure, havnt a clue, I want and hope it’s me, that’s the best outcome for me, I can work on me and my son will be fine, scared to death!
So, what about those of us who are trying to understand but all we know is we were bad and it was our fault for not behaving in a way our parents could understand when thats how we felt? When every day we didnt know what inconsistancies we would get caught in like traps and never learned to trust even though we were never truly abused? Where are the resources for adults that learned to hide their differences so no one would know they didnt deserve to be alive?
Autism and all the other names they give things now days are not something that developed in one generation.
Ever since discipline and lines not to be crossed have been removed then this is the result.
The animal world does not stand for bad behavior from it’s off spring, yet we think we can talk to them and get kids to understand problems when they have nothing to compare anything too.
But History repeats itself and these kids once parents will probably result back to the extreme parenting our Grandparents were quite used too. Mark these words…
kids with autism are human and shouldn’t be pampered. You should dicipline and forget about Autism speaks
most people have problems. I find autistic kids get to much attention. I don’t see what the big deal is
if they’re bad. Most likely they grow up to be bad people. Co-workers they are bad to, they have no families, no friends, no connection to people.
You are not going to get anywhere being irrational. Teach them the world is real.