The advice and reasons people have gave for my sons' Autism

[Itsfunny]

I posted this on another thread but thought I'd share it here again to start a new discussion as I feel there is so much ignorance when it comes to Autism.i see and hear it constantly and experience it almost every time I have my son in public.

The 'helpful'things that people,family and strangers and care givers have said to me over the years
oh but autistic kids are geniuses really
He just needs to be told no and shown who's in charge
Hes just spoilt
Hes just badly behaved
Autism isn't real,hes just naughty
It's your fault because you were depressed when pregnant with him,bad hormones gave him Autism
I know someone who has autism who's a doctor now
I know someone who has Autism who couldn't speak but now is a millionaire
Have you tried putting him to sleep earlier?
Isn't there a place you could put him in like a hospital?
Have you tried feeding him xyz, so and sos child got better eating that
He will outgrow it
Hit him when he tries to scratch you so he wont do it
Lock him in a room and leave him to calm down
Did your scan not tell you he was this bad?
Its because you were in your 30s when you had him
Its because you did something in your bad life and this is your punishment
Some people are just meant to suffer
Have you asked the doctors if they can shock therapy his brain into working?
Dont know how you do it,I couldn't.
Autism is just an excuse for bad behaviour
You need to be firmer with him

These are some of the wonderful bits of advice from a range of people, might surprise you that majority of these people are classed as well educated.

My reality is a severely autistic child who has learning disabilities and has no comprehension or understanding of language, so he cant follow an instruction and isn't being obtuse or naughty.my reason for this thread is so people who dont know come to realise this.

My friend (who lives in France) has been told by medical professionals that her son's autism could have been brought on by a lack of maternal love...
So basically her son is autistic because she's a shit mum... Thanks, doctor

Well I can definitely relate but I’m also a bit shocked at some of the things people have said to you. Don’t get me wrong I’ve had people who don’t know me that well make throw away comments because their perception of autism is so skewed and rigid, but I’ve never experienced most of the things you mentioned, what arseholes eh.

My MIL asking if I was “sure” DS was autistic because he didn’t do XYZ that another child she knew did. After about the 100th time of asking over a 6 month period, I snapped and asked if she thought all the professionals who diagnosed him were wrong then or lying?! Honestly, it’s draining having someone question his diagnosis time and time again! Makes you question your own sanity!

Also the Ed Psychologist who saw my DS for his EHCP said he absolutely wouldn’t learn to read by phonics, there was no point even trying and he would only learn by remembering things. he has now learnt to read by phonics but she was absolutely adamant this wouldn’t happen.

Hes bilingual - theyre slower to speak. 1. Thats a myth and 2. He didnt say mummy until he was three!

But x behaviour is normal. Well 2 clinical psychologists and a neurologist disagree. That usually shuts people up pretty quick.

Some of you are unfortunate enough to know some really unpleasant people.

So sorry so many of us have had the same "well meaning" comments.

I have a daughter with "high functioning" autism, and a son with ADHD and probably ASC as well, just not diagnosed yet.

I get "she looks so normal", "she's fine when she's with me", "she's playing you up", - all of these from the same mum I thought was a close friend, and then her daughter decided my daughter was mean - read she wouldn't do what this girl wanted her to - started bullying her, and we are now no longer friends. My daughter actually did a power point to explain to her daughter exactly what she struggles with.

My son - every day is a constant battle - my mum basically thinks I let him get away with too much and he just needs a firm hand.

I really wish all these people would walk a day in our shoes.

The hardest part about having kids with SEN is other people's reactions. From fighting constantly with professional services to get your concerns taken seriously, to unsupportive schools, for money to get them the help in terms of private counselling because CAHMS won't look at you unless you have seriously tried to commit suicide, and then all the condemnation - said directly or indirectly.

I love my kids more than anything and would fight any battle for them. I can help them manage their emotions and struggles in a world not built for them, but I can't sort out the shit people who think it's ok to behave so appallingly.

Sickoffamilydrama I feel your pain. My DD masks better than the BAFTA stockroom, I won't say exactly what I was told as it would be too outing but a member of staff at my DD's school basically accused me of wanting a diagnosis and wanting my DD to be autistic. Just because she didn't feel comfortable enough at school to 'unmask'. I lost any respect I had for her, never spoke to her again. It is truly shocking what we have to put up with. And no, we're not all a 'little bit autistic' 🙄

Some of these are shameful.
People don’t seem to realise that each of us are individuals and experience the same disability in very different ways.

I have spastic cerebral palsy.
I was about 16 I went for some beauty treatment. The therapist knew my family, I don’t know her at all. I’m a catholic and she told me that if I prayed/had prayed hard enough God would have healed me.

ReturnofSaturn that article's a load of cobblers. I had a fantastic pregnancy, felt on top of the world right through it and guess what, my DD is autistic.

Lamentations you may find it difficult to believe the ghastly comments we as parents of autistic kids receive, but I can assure you it's true. I've had several of the ones mentioned upthread and lots more.
Many come from people you think should know better, particularly teachers and medics.

Close relative rang me and very breezily said - I'm ringing to ask if your DD has grown out of her autism yet?

Medical professional to DD - 'The pain you feel is not pain, because you are autistic, it's not pain it's just a different sensation'

Very recent and topical one, last week discussing DD's severe difficulty in tolerating a facemask, balanced with the terrifying fear of being verbally attacked if she doesn't wear one. Comment was 'Well she'll just have to get on with it, won't she?

I've lost count of the amount of times I've heard teachers say 'She just needs to try harder' when I've been describing something she absolutely can not do.

@Lamentations ,I've just came on and read your post and dont know what you said that was reported and deleted.you are questioning if these things were actually said to me or things I'd heard or read on Facebook?!really?why would I do that?what a strange way to think and question someone.why would anyone want to say this was said about their child!.this is a thread for discussion to share experiences not for strangely veiled accusations .

@returnofsaturn I too was deeply depressed throughout my whole pregnancy and then beat myself up thinking I'd caused it,truth is theres no definitive reason it happens just a host of maybe and possibilities.please please do not punish yourself with these thoughts like I did.no one would chose to be depressed or have an autistic child, these circumstances have been out of our control.wishing you the best.

Yanbu. DD'S form teacher gave her a lecture on how she needs to make more effort to make friends. MIL comes out with things like, "They don't seem autistic to me" and "They don't look autistic." I mentioned to someone that I think I am on the spectrum too and was told I can't be because I show empathy. Oh, and the first paediatrician DS saw said he had too good eye contact to have autism.

I've had most of those already posted. One absolute clanger was when DD was about 10. A dad at the school overheard a conversation I was having with another parent. He said he was sorry to hear dd was autistic ( ) and what a shame because shes so pretty.

@regularname omg,I'm lost for words.such scathing judgement,who did she think she was, a bloody angel of deliverance?

@petitmum oh yes the talent one,yes making my life horrendously difficult if that's a talent!
My son is a walking earthquake and breaks everything.

My ds has autism, ADHD, tourettes, hypermobility and dyslexia

According to my dad he just needs a good hiding.😭

My sister he'll drink water if he's thirsty enough no he won't thats why he ended up in hospital with dehydration on the only overnight visit to hers 🤬

From my mum "atleast he looks autistic " (his limbs are somewhat floppy due to hypermobility haa physio 2 weekly ffs)

I have asd dyslexia and tourettes unsurprisingly I'm nc with the lot of them.

From ed phsyc he'll grow out of it. Same from dla advisor.

Have you tried insert latest Internet "cure"

And my absolute favourite "that's what you get for vaccinating him"

Also had all the parenting courses and wall charts but less so now that he's 11

I just wish people would keep their advice to themselves

OP The post was me asking if they were actual comments made to you by people you knew. I thought your OP read a bit like one of those 'To the lady in Croydon Tesco this morning' posts that you see on Facebook. As I said it wasn't meant to offend and I'm sorry that it did (whoever reported it and MNHQ apparently). This will probably get deleted too because I've repeated it.

BlankTimes I am the parent of an autistic child and, like others, people have said a few things over the years that were ignorant but nothing like some of the shocking stuff the OP reports, hence the question.

I just think people who don't live it don't have a clue and say some insensitive and sometimes idiotic things. I think it's a mistake to take everything to heart though, most people mean well. If I didn't have my child I might also try to 'helpfully' tell someone about autistic geniuses I've heard of - who knows.

Obvs you should take to heart people outright blaming you and telling you to hit the child - that person is a twat.

@pinkyboots1 what do you mean by mixed foods?

Wow, some people are dicks! I'm so sorry you have to hear such insensitive nonsense.

I have two autistic children and have had so many comments and judgements over the years:

• Well he doesn't get it from our side of the family..." said by MIL

• "How did they get that then?" from a parent at school. "Genetics" was my reply

_ "What's his special talent? They all have a special talent to make up for it, don't they?" from a teacher. I couldn't reply because I was so shocked but I wish I'd replied "he can fly but we tell him not to do it in public because it scares the normies"

• ^"Just tell him he has to eat what you've made, he won't starve himself", he has ARFID, he will starve himself

• ^"Send him to me, I'll soon have him trained out of it", oh my sweet naive dear, you wouldn't last a day

• ^"Have you tried telling him to stop it when he has a meltdown?", no that has never ever occurred to me to say stop it... of course I've bloody tried that before we knew what we were dealing with, didn't work though

• "You need to tell him off when he does that..." in relation to any negative behaviour related to autism and yes, sometimes he does need to be told off for it but it is utterly pointless telling him off or talking to him when he is in a heightened state. If we need to talk about a behaviour then it has to be done later on once he's calm

• "God only gives special children to special parents...", God can kiss my rosy red arse

• "I don't know how you do it!" / "You're amazing!" / "You must have the patience of a saint!" I do it because I have no choice not to. I'm not an inspiration or amazing or saintly, I'm only human and I fuck up sometimes just like parents of NT do. Elevating me to saint-like amazing status means that society judges me far more harshly for my fuck ups than they do parents of NT children

• "He needs a good hiding" YES! Let's smack that autism right out of him!

• "We didn't invite him because we didn't think he'd cope..." no, he probably wouldn't have coped with a whole class party but when the whole class is invited except for him and they're all talking about it in front of him, it would have been nice if he'd at least had an invitation

• ^"Is he definitely autistic, he doesn't look it..." well usually he wears a "AUTISM" sandwich and rings a little hand bell while he walks but he left it at home today

• "It didn't exist in my day" yes it did, you just didn't see it

• "it because of too much screentime / vaccines / processed food / lack of boundaries..." I look forward to reading your peer reviewed research paper substantiating these claims

• "It's a label / it's an excuse for bad parenting / it's a get out of jail free card for the parents / its overdiagnosed..." trust me, no one signs up for this for shits and giggles or just because they decided they'd like an excuse to be a shit parent. I'm not living in the land of milk and honey, excused from parenting because CAMHS handed me a label and the DWP handed me a shit tonne of DLA money.

What I've found is autism isn't the end of everything. Nonverbal autistics are interesting, lovely people who can still communicate emotions, love, and interests. The worst thing is other people who react to nonverbal autistics. Unfortunately, I watched some YouTube videos from the early on and I think most people have no experience, because many autistics were shut away from society. Here is a Geraldo Rivera special on Willowbrook from the 70s

Absolutely devastating how people were treated.

I've had lots of these types of comments OP and to be honest I rarely challenge people however, recently a (school mum acquaintance said to me) you would think that you'd know better than to let him away with that sort of behaviour!! Its hardly your first rodeo" refer to the fact that I have 7 dc and I actually answered back for a change a said simply "if you genuinely think that, then you have far more problems than he will ever have" She doesn't even make eye contact anymore.

Do you actually live with a non verbal Autistic person @elmouno ? My son has severe autism and learning disabilities and is non verbal ,whilst we love him dearly it isn't lovely or interesting ,it's hard work.

'He just looks so normal'
And 'well he's very bright so you dont need to worry' when ever i express a concern about the fact he's been out of school for two years and is still now only part time. I know they are trying to reassure me id rather they said 'he's been let down' and he isnt so bring that he doesnt need educating.

And yes to sticker charts/reward charts.

Oldest DS does not give a shit about stickers, charts, or rewards. Does not give a shit about removal of privileges because he can recite his favourite YouTube videos, book passages, and songs by memory so just does that instead. The amount of professionals who have looked at me blankly and then suggested I let him choose his reward because that'll motivate him. He has no concept of work vs reward and no idea of what an appropriate reward is based on the amount of work done. Last time one of them asked him what reward he'd like he answered "a Bugatti, or maybe to meet Barack Obama, or a drink of water".

Youngest DS can track rewards and stickers with NASA-like precision however he also does not give a shit about rewards and is almost Machiavellian in his actions. He used to have a jar, suggested by CAHMS, and every time he did something we wanted to encourage we put a bead in the jar. Every time he did something negative that we wanted to discourage we took a bead out. It lasted almost a week until we got fed up of his removing a bead before he did something negative and we could predict when he was about to be naughty (because even autistic kids are naughty sometimes) because he would take a bead out first, one afternoon he solemnly handed me a bead then immediately walked over and shoved his sister for touching his dinosaurs. All the jar did was teach him to count beads.