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?

My son is nt but I do agree with you. I don't know what it's like. But I also think you can say that about loads of things. I went through infertility and faced the prospect of never having children for years. unless you've been through that, you don't understand it either.

I am retired now, but I was the clinical lead for “special needs” anaesthesia, as part of my hospital doctor role. I spent a lot of time adapting conditions in the operating theatre, reducing lighting and noise, and training staff to deal with autistic patients, among other conditions such as Down syndrome.
I still remember the looks of relief in parents’ eyes when they realised that I “got it” - that I would work with their autistic child or adult and fit into their needs rather than impose a routine that would distress them, or expect them to cope with scary monitoring equipment being attached, or cannulae inserted. I think the parents had probably suffered years of not being listened to, or expected to make their child behave like a NT.
We sang patients to sleep with their favourite tune, pushed them into theatre on a wheeled recliner chair while making steam train noises, if trains were their autistic obsession, and on one occasion showed an autistic teenager how to give his own anaesthetic, as he couldn’t bear anyone touching him!
I didn’t know the minutiae of daily life with each one of my “special” patients, but I did have an imagination and was willing to listen - and I think that was what they and their parents appreciated.

As with anything in life, the best people will ask ‘how is that for you?’ Or ‘how do you feel about it?

I don’t really subscribe to the whole ‘can’t understand it if you haven’t lived it’ philosophy, I think it’s very exclusionary.

Of course I can understand however what it’s like to feel bereft, exhausted, frustrated, depressed or down.

I lost a friend because she blamed me for ‘not getting’ the particular trauma that she was going through. Well naturally, I couldn’t… I wasn’t living her life. Every single trauma is different, every ND person is different, every family is different. But a lot of those feelings - the sheer exhaustion, the sadness, the fear, whatever… People who don’t have loved experience can often empathise with those.

If you want help (and god knows I have… ND DH and DC here), then you sometimes need to invest in telling people about the impact that has on you, and what you’d actually like them to do as a consequence. You might want physical help, financial support, a listening ear, the opportunity to escape out for a while.

Please don’t alienate those who don’t have your lived experience. Tell them how you feel. Tell them what you’d like them to do. But don’t expect people to magically know… that’s really unfair. They may just ignore, or even nod along anyway… but the ones who really care will listen and act.

Yanbu

I feel in some ways its a bit like intense grief... people sympathise and try to be understanding but unless and until its their family then they can never truly appreciate how all encompassing it is.

@Babdoc It is so good to hear that there are people out there trying to make medicine inclusive. I am an autistic adult who was not diagnosed until I was in my late 30s and I have a MASSIVE distrust of medical professionals.

I was called a stupid little girl, told I was obstructive and denied medical care when I just wanted them to answer a few questions. I was threatened with being sectioned, having my son taken away (I just wanted to go home and sleep without being woken up by all the other mothers and babies on the ward). I was told I wouldn't look after myself, despite having done it perfectly well up until that point...

I don't think I will ever trust medical professionals again, but it's good to know that there are some out there that are trying to do better for people like me. Thank you.

You are amazing. The world needs more people like you!

Yes but you could equally say that non parents don't get what it's like to have children. Of course one can't truly understand it. In the same way I don't understand how people cope with a terminal illness.
My niece is non verbal ASD and is 12. Adolescence is a real challenge. I understand more now having spent time with her and listening to my sister, but sure I can only imagine what it's like as in these circumstances 24/7.

Of course they don't, just like I don't get what it's like to be paralysed and in a wheelchair, black in a predominately white area, crippled by anxiety to the point you can't leave the house, have cancer and so on. Lots of things are difficult to understand if you don't live with it. Its a bit of a blind alley question to be honest.

My 5 year old daughter is autistic. But you would only realise she is living 24/7 with her- she's very chatty, makes eye contact. But she is still in nappies and has huge meltdowns, I feel so judged by society when out with her. I realise she prob does come across as naughty but those 'tantrums' come from sensory overloads.

Yep. just today my dad told me it was my fault ds is fussy! I pander to him by making him what he likes, er yes because if I don't he just won't eat!

Well, yes - in the same way as a white person cant “get” being black or someone with two legs can’t “get” what it’s like to be a double amputee.

It doesn’t mean that you can’t learn more about it, but no, of course you’ll not get it. You’re not living it.

@Untitledsquatboulder actually your comment is. Many autistic children will starve rather than eat foods presented to them. Hence the “they will eat if they’re hungry” is dangerous advice.

I think there's a massive difference between people who accept they don't understand and those who try to relate and give advice despite having no experience (e.g. my NT child also has tantrums, needs routine, has sensory needs, etc). Those same people who say 'well aren't we all a little bit autistic'. It's incredibly frustrating and only serves to belittle the actual challenges of ASD.

Yes yes and yes again! SO MUCH of this.

I'd like to add 3 things I find hard, in order of importance:

1. Seeing my child (ren, both have ASD) try SO HARD to interact with the world & struggle so much. They get so down with the unkindness.
2. The absolute lack of help from 'authorities'. Worse really, it's a window dressing of 'help' that is actually exhausting 'gaslighting' but if you don't interact it is a red flag so you have to but it takes time & energy away from your children who are the ones who need it.
3. That there seems a general acceptance 'in society' that 'we are all on the Spectrum'. No, we are not. Or rather, ASD is a wheel of behaviours (not a spectrum anyway...) which are common in society but which are felt or exhibited to a level that it becomes problematic / disabling for the person in question. There is an official benchmark of that (whether the DSM5 gets it right is another question). We are not 'all autistic'. It is not a 'superpower'. It is a complex & often difficult lifelong condition which often requires considerable (family/friends/specialist) support & MH support too (the effects of trying to navigate a world set up for NT people)

#3 particularly resonates. The number of people who've told me that when I'm trying to explain my issues and won't budge no matter how much I explain that it's not true...I just want to shove their head into the nearest wall. Repeatedly.

For a flip of the OP, the opposite is also true (but less emotive) - being the ND parent to an NT child. I used to think adults were confusing...I spent most of our daughter's childhood completely baffled and just hanging on for dear life.