To think parent of Neuro-typical children just don't get it

[sunflowerstreet]

I just don't think they get it....

My DS is non verbal autistic and he's really opened up my eyes now to understand the challenges we face as parents of ND kids! My other DC is NT and I really never appreciated how easy it was. I remember years ago giving my friend who had a DS with ASD advice on how to handle his diet (cringe) and now i have a child myself who only eats 3 foods and wouldn't eat unless reminded throughout the day I totally cringe at me thinking it was as simple as 'just do this' 'just do that'. Although it was well meaning. I often feel myself wanting to scream now a days when I get patronising advice from others.

Once it became apparent DS was different I joined some parent support groups and it really opened my eyes to the lack of support and understanding that many people have for children with learning difficulties etc. I had to distance myself from some friends who seemed to treat my sons sensory issues and traits as naughtiness or would try to relate my situation to theirs with their NT child.

So AIBU to think if you've never had a ND child you really just don't get it?

If you have a room full of NT people they will all be different. If you have a room full of people with ASD they will all be different. What works for one child or adult may not work for another NT or not.

OP if your suggestions were made out of compassion then why cringe? If they were made out of ignorance then you now know your own situation but not others.

I don't think that OP is the one lacking understanding, here.

I am a parent of an ND child and tbh I still wouldn't say I really get your situation OP. Frankly I have about as much idea about how things work with a non-verbal autistic child as I do about how to climb Everest. My NT DC just means I'm not going to do the obviously stupid shit like say oooh is he just naughty/they don't starve themselves etc, but I think that falls well below a genuine understanding.

My 8 year old with ASD still drinks from a babys bottle.
The last time we tried (under medical advice) to withdraw it he didn't drink for 2 days!

It has to be the same bottle can't change anything on it with the same type of drink.
The amount of people that stare and talk behind our backs or tell me that he will drink if left is astonishing.

My child is lovely but it is draining and even I don't know how I do it.

I also have an adult and a 15 year old with ASD and although somethings have got easier other things have got harder.

Yep 9 times out of 10 they assume they must be just vastly superior parents. I have children that are NT and one ND and the NT were a million times easier to parent in every way from day dot. I suppose if I'd only experienced that I might assume I was a better parent too.
But then as an adult I developed an illness that is massively misunderstood, more than autism in fact. People make huge wrong assumptions and the implications from the discrimination has been at times worse than the actual illness.

Ha, wait till your child is an adult.....then you'll face ignorance from parents of younger, neurodiverse children AND the general public.

I can't judge, I was the same until I my life became what it was.

I think this is rather an odd point. Of course people who have no experience of a thing don't really get it that much is obvious. But you can't lump in all ND kids and imagine some us against them thing.

I'm sure I don't get you struggles with your child. I'm sure you don't get mine wiht my child. I have NT and ND kids.

Yup doesn't get easier. My sister who is now mid 30s was diagnosed at 5 ish alongside a global developmental delay etc, few people had even heard of autism, there wasn't even the internet to get info or support from.

Absolutely they don't get it but I'm guilty too 😩.
I've got an almost none verbal autistic young adult son who also has severe learning difficulties,I used to think people moaning about their high functioning autistic children were clueless about autism and I had it much worse!!!!
Now i have a very high functioning daughter and I take it all back.she is much more challenging and harder work from morning till night 🤷‍♀️.
Having two totally polar opposite children has taught me a life lesson and that's to just be kind because nobody knows what battles other people are fighting xx

Mam of 2 ND kids and yeah I cringe too at the "helpful" advice I used to dole out! When people now give me "helpful" advice it irrates but I remember doing the same thing and it came from a good place of genuinely trying to help so now I thank the person and try and educate on how raising an ND child is different and I have to use different parenting techniques. Rarely the person just doesn't get it and me trying to educate is a waste of breathe so i just say thank you I'll have a think about trying that and let it go. Mostly though I've found it opens up conversations and we end up brainstorming out of the box ideas to try as most people genuinely do want to help other parents out and the more we educate and have conversations the better. Keep educating OP and smile and thank the lost causes with gritted teeth!

But surely this is true of pretty much anything in life?

People who suffer from infertility - get told by those who don't, oh just adopt..you should just relax etc

I mean how often has a parent been given advice off someone who doesn't have children? You just nod and smile....

No one can understand the complex intricacy's of everyone's personal situation.
We can try, and most people will emphasise but will never truly know how it feels to walk someone else's shoes...

Most people do want to help, so although suggestions may not be helpful, they may come from a good place

It's annoying when people who have no experience of your situation start giving 'advice' or think that parenting a toddler is the same as caring for a teenager with a severe learning disability.

I think that you can't really understand unless you have experienced it. I do also see this though within the ND community. I have been told that people with autism are this and that by those who do have experience with asd. They are talking about what it is like for them or for their family member. This is not the case for everyone with the condition. There is a lack of understanding of this. My eldest also has severe LD and challenging behaviour. A parent whose experience of ASD is a person with what might previously be diagnosed as aspergers and no LD would see things very differently to me. I also think there is a tendency to see all parents of children with SN as excellent parents. Whilst it is true that being a good parent to a child with SN is very hard, not all parents are good parents. This applies to people with kids who have special needs and parents of NT children. I am not a saint, nor do I always know best, nor do I always get things right.

Same with everything. Fed up of the ridiculous "advice" from sighted people about how I could see better if I wore stronger glasses! They don't work for me. They also claim they know what it's like to be tired. Nope. It's different. And wearing glasses means they get it. They don't.

And then theres the adults with autism / parents of children with autism who turn it into a competition and at the same time, belittle other people with Autism.

I think people with little experience of caring for a ND child don't get it.
I think what many people also don't get is:

How much difference it can make if NT children and especially teens make an effort to include ND kids

That ableist language can be deeply upsetting but far more widely tolerated than other forms of prejudice

That there is a chronic lack of support for autistic people, as well as those with LD

That autistic people don't lack empathy

That we aren't 'all on the spectrum'

That parenting/caring for ND children can be extremely lonely and isolating

That the parent probably doesn't need advice as they'll be an expert on their own dc

That even if it seems kind, it's not helpful to say a ND child seems fine or 'normal', and that it's more helpful to ask how their profile affects them

I don't get it . Thankfully I've never had to deal with it .
I saw a mum and grandma in a busy shop on Saturday with a little boy of about 6. He was having permanent meltdowns , you could hear his noises , shouts , screams throughout the shop . When they got to the tills and mum put her basket on the till he started up again . Grandma looked totally embarrassed and poor mum was trying to calm him down whilst under the gaze of literally everyone . Observing this I know it's not something I'd be able to deal with and child would be in residential home or something .

No, I don’t think they do ‘get it’ but parents of children with similar disabilities can be remarkably poor at ‘getting’ each other’s unique experience too.

Just because you have an autistic child, does not mean you are necessarily better placed to ‘get’ our experience if my son’s complex speech disorder, and vice versa. Perhaps the experience makes us better at listening, or more open minded, but only sometimes.

To be honest, I’ve heard enough misplaced advice and judgement to last me a lifetime. From all corners. While it hurts every time, it’s no longer much of a surprise. What I listen out for now are the random folk who, not because of shared experience, but another very special quality, without trying see the potential and strengths in my child. I can remember a random lady in a garden centre, a Rabbi at a wedding and my school friend’s old dad who all said just the right thing at just the right time, and it meant the world.

Yes 100% my son is also non verbal autistic. So many ideas I had about parenting have just evaporated.

I genuinely believed that kids just ate what they grew up with and I wouldn't have a picky mid. I eat tons of fresh veg and am a healthy diet type person, my son doesn't eat a single vegetable. He eats about 5 things.

I thought I'd be low screen but the ipad is so empowering for my son, it's enabled him to make choices and preference he is unable to communicate.

Honestly every single day is really hard. I can't leave him for a second. He hits constantly. It's really tough and even my NT parent friends just don't get it.

I have 3 high-masking autism and I get SOOOO fed up with people telling me they're being naughty or should just 'learn' to fit in. Actually, that's what they are trying to do, that is what leads to all the 'naughtiness'! They're trying to fit into a world they don't understand.

How about NT's learn to have a little more acceptance of behaviour that is odd, but fine really. They're not hurting anyone, why can't they be weird! I was told by the head of a primary school that my son's weird and obsessive behaviour was why he was being bullied. So, his autism then. Noooo, but if he stopped doing it.... How about teaching other children that difference is ok? Difference is normal.

I have 3 with high-masking....

Yes!! This comment a million times!!👏🏻👏🏻

Yanbu. If you've met one autistic person you've met one autistic person. My son has ASD and so does my friends son who is much younger. Her son is non verbal though (mine was, isn't now) and will never be independent and she said she found me trying to give her advice really annoying as her son is at the opposite end of the spectrum to mine. I felt absolutely awful.

That's it in a nutshell.
No one can ever really 'get' the life of another (especially if it is difficult)
But some try harder to understand / emphathise than others.
I have 2 kids with Autism, Anxiety, Dyslexia, School attendance problems (no wrong kids but wrong school but no better one available), Dyspraxia, SPd etc.
I have somehow maintained a friendship with a woman who's son is Head boy, & an effortless achiever (as is she, as is her H). I don't know how as we have nothing in common. But she is thoughtful & that helps a lot.

I can relate so much, it's just so bloody difficult to keep going some days. I wasn't being mean about parents of NT children when I posted this it purely is the fact they just don't get it there's no amount of explaining until you've walked in our shoes. x

I get it, I'm about to go and rescue my autistic dd, yet again not eating. She's an adult, speaks just fine but has other challenges