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.

@x2boys

Yes. At first I was devastated, then I learned to not care and now I find life actually really enjoyable. I watched a lot of Special Books by Special Kids videos on YouTube. It really makes you think about the bigger picture. They are all unique souls.

I’m at the start of all this - my dd aged 3 is on the pathway to ASD diagnosis. Not loads of people know yet and if they do I’ve hardly seen them cos of lockdown but so far I’ve had:

• don’t be surprised if she’s still in nappies at school (said By a friend because the one other child she knows with ASD happens to be in nappies)
• on mentioning that my DD likes numbers, same friend “oh yes they like maths don’t they”
• same friend “don’t worry, my daughter has meltdowns too” No, no she doesn’t. It is not the fucking same.
• another friend telling me I was wrong for not driving dd (and my one year old) over an hour to a friends party where she’d have known no one and struggled and probably have a meltdown. I apparently was wrong because my daughter will pick up on my worries and apparently that’s what’s causing her anxiety.
• same friend telling me that my daughter might not even by affected by the time she’s 18. Because what, she’s going to outgrow it?

• family members repeatedly calling my dds meltdowns, tantrums and asking what they are about. There not “about” anything. They’re because she’s completely dysregulated.

• and I’ve had a lot of “oh but lots of kids are like that” upon raising any concerns I have whatsoever

So flowers and gin etc to everyone coping with a child with additional needs. No one gets it but us.

Make him ask for things, then he'll have to talk.

Have you tried just putting him on the toilet?

DS1 is able in some ways but "high functioning" really doesn't fit. He had a teacher back in year 2 who thought he needed a firm hand. She was horrified when he deliberately flunked a spelling test, including spelling his name wrong. She was convinced that everyone was exaggerating about his ability to read and spell (understanding all of what he read was a different matter but he was hyperlexic)

My DS is autistic, my wife has had had a lot of these comments and more while out. Generally the older generation are worse for tutting and comments.
In a garden centre one old lady approached her and said she should train him to be quiet and behave before she brings him out.
And in a cafe she was told by a bloke (wearing his company lanyard - we reported him afterwards) she should keep DS in the car like a dog if he was going to make noises like that!

Strangley enough I never get comments. It may be due to the fact I look a bit scarier than my wife and give the tutters a look that says 'go on I dare you to comment'

@Gancanny - i love that bead story - thats so much like my son!
I've taken to starting conversations with professionals with 'yes we've tried a reward chart'

For anyone who is a Christian, I found this Bible verse to give me a sense of peace of it all.

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

John 9:1-3

Basically if you have been given this life as a parent, you have been chosen to see things no one else will. You will experience incredible good, and every bit of progress will feel like a miracle when it happens. Your experience will be so far removed from that of others that they will never be able to understand. It's a different kind of life but not a horrible one.

‘I know he’s autistic and has had cancer too but he still needs discipline’ from school SENCO.

YANBU .my DS has ADHD and I've been told he is just sensitive/ he will grow out of it etc etc

I don't have an autistic child so I don't have the kind of experience that you all have. I did spend a couple of years working for a charity that supports teenagers with autism and learnt a lot about ASD during that time so have an insight that the average person maybe doesn't have.

I now work in a high school and it is honestly shocking how little some teachers understand about Autism, it scares me that they are working with young people day in day out are so ignorant. I once had a blazing standup row with a member of our senior leadership team over their treatment of an autistic child (I'm usually very introverted at work), I was honestly so disgusted by their attitude.

A lot of education needs to be done with teachers around SEND and I'm so sorry your children are bearing the brunt of that not happening :(

My son is still a toddler but the most frustrating comments from me are ones from friends like "mine do that too" but then when we meet up, it's quite clear to me the differences in our toddlers.

@Dishwashersaurous

Genuine question. Do you think older people don’t ‘believe’ because there were less people with autism fifty years ago or because people with autism were hidden away and thus the general public weren’t exposed?

One of my first jobs in the '70s was looking after children and adults with autism.

They were indeed hidden away, in 'hospitals for the mentally subnormal'. I was told by senior staff that the problem of autism was caused by mothers not paying their babies enough attention. This was seriously believed.

@Shocked12 foods mixed on his plate or touching... a big no no for my lad... even mixed textures can tip him into a melt down

Ahh you forgot the golden nugget the in-laws love to tell me
Everyone is a little bit autistic.

You can no more be a little bit autistic, than you can be a little bit pregnant

Following a discussion on brexit where I argued that it would be bad for special needs funding and my MIL said special needs education is costing the UK too much already (she is very pro Brexit) she said 'it is crazy that the nhs do not test all babies for your son's condition so you could have had an abortion'.

@pinkyboots1 I was worried that's what it meant. My dd has signs of autism but massive social/ seperation anxiety. School refusal. Otherwise known as piss poor parenting as obviously with only one of my children frightened of the world it's my fault 🙄. Can anyone help me understand how to tell where anxiety differs from asd and anxiety. She was very social and as the years have gone on (9) now isn't. Food has to be served not touching a different food. Eye contact at home not when anxious out of home. Can act different/quirky when really uncomfortable socially. Empath massively feels all the world's pain. Can sob if notices my change alters (cross) she has had anxiety since 3 but always loved friends now doesn't want any last couple years or only a couple. Can't share her things. Can if not hers like household toys. Says too anxious it will break. And I mean can't not won't. She will try to make it up to child in a different way like playing on trampoline as it can't break in her eyes. I've been told if it is it's only mild so doesn't need a diagnosis. Thank fuck as after five years crying at school I thought she may be struggling glad I got that wrong. Phew. She's not the child she was when younger she loved parties, kids, now she won't even have one friend on her birthday. Also academically behind.

Shocked12 my dd recently got asd diagnosis at age 11. The signs were always there from a very young age, food issues, sleep, very rigid in her ways and headstrong. But on the other hand was sociable, the life and soul at nursery, stickler to the rules and wouldn't put a foot wrong with teachers etc so went under the radar for a long time. Mainstream interests the same as all her friends. Expert masking.
Age 7 /8 was when things really turned to shit. Friendships became more complex, her anxiety massively increased and the school refusal began. I think at this age, particularly with girls you can really see how wide the gap then is. It's not really so obvious in younger years.
I also think by the time asd kids get to this age they have got the "history" built of what makes them anxious, what they find difficult etc and this in turn can make life more complicated and in turn increase the anxieties.

My nephew is severely austistic - Mostly non verbal but shouts and makes loud noises poo throwing grass eating spitting
It’s such a challenge and yet he’s a lovely boy
Delight of an exH once said ‘If his mother hit him hard enough he wouldn’t dare to behave like that ‘.

Some people are just thick

I have a 5 year old autistic daughter. I also have an autistic brother. I have heard so many of the comments you mention OP. It's so depressing how much of the general population still think autism is just an excuse for 'bad behaviour' (which confuses them when they meet DD1 as she's the most gentle, sweet natured child you could ever meet).

I even once had a work colleague who is a Consultant psychiatrist (I'm a nurse) tell me that my daughter will 'grow out of it as she gets older'.

I've heard the following -

We're all on the spectrum
My kid does that too, it's normal
Do you think your anxiety made him have this?

It goes on and on.

Genuine question: what should people say? I mean, if they are in a situation where a response is warranted. My beautician told me her daughter had bipolar and autism and I genuinely wasn't sure how to respond for fear of saying the wrong thing.

It is so depressing that the notion of publishing autistic children is still out there. It is more than sixty years ago that Sophie Madsen published her findings that autistic children respond well to routine and love.

Well it's difficult @Miseryl because autism presents in so many different ways I wouldn't say I'm sorry for them or tell them how amazing they are maybe just ask about her daughter ,her likes and interests ? My son has severe autism and learning disabilities it's not a shame ,but it's bloody hard work he's the reason I get up on the morning as is my older son a very much loved child I think most parents don't want sympathy but a bit of empathy wouldn't go amiss

Miseryl
I’d ask about her dd, how does the autism and bipolar affect her day to day, what she’s into etc.

My son has severe autism and severe learning difficulties and I think I've heard every opinion going !
A good slap will sort him out !
Your too soft !
Give him to me for a week I can sort him!
It could be worse he could look disabled!
I don't know how you do it!
Give him cannabis oil it cures everything!
We are all a bit autistic I'm sure he will grow out of it!
Take him to the casino he will win you loads of money!
The list is endless 👎🏻

I think what I would like most is some understanding of how huge the spectrum is not everyone with autism is independent can work have relationship,s etc a great many children at my son's school for children with complex disabilities also have a diagnosis of autism but they tend to be ignored or forgotten about