To think that the public doesn't accept autism

[SomeCleverUsername]

Have 2 disabled DC with very high needs. Also work in this area. DH and I usually take them out separately so we can focus fully on 1 child. We never let them hurt other people and we take them out of situations if they really are not coping.

Yesterday we all went to local shopping centre as a family which we haven't done for a while. It's really obvious from DC's presentations and their specialist equipment that they are disabled. At several opportunities my DH was watching the boys while I went to the counter etc and while I wasn't in the thick of it I got to see just how many people were openly staring at them, tutting, eye rolling, even pointing.

Then I saw another thread this morning on a similar ish topic. It's honestly made me feel like I should never take them out in public 'normal' spaces again.

Should we only go to 'special' places? They already go to special schools ...

Both primary aged, DC 1 has ear defenders and other specialist equipment and talks at about the ability of a typical 3 year old. DC2 is mostly in a specialist buggy and is non verbal, in a nappy which you can usually see because he can only tolerate leggings rather than jeans etc.

These things are probably very clear to you but a passerby honestly may not notice them. Ear defenders can look like the sort of childrens headphones sold with yoto players, things like chewelry are quite common now (5 children in DS class of 30 have it!).

I wouldn't notice what a child had under their leggings.

The nephew post upset me too. The family could have gone to a asd friendly showing of the panto but instead they prefer to find a polite way to not include the asd child. It's sad, for the child that his own family don't want to bend a little so he can feel included. However I would also say his parents need to manage his experiences and ensure they are achievable for him and it's beneficial to him.

When my son was under 4 I found I got more judgment/critique as people assumed he was naughty. Now he's older people seem to recognise it's more than mis behaviour. But I also do a lot of management- prep before visiting places, short visits, not doing things ds can't manage.

There is unfortunately a lot of judgment from people who don't know asd/adhd and don't experience it in their day to day lives. there's sweeping statements about over diagnosis from people who have no concept of the fight for diagnosis. It's so sad because with a bit more give , acceptance and empathy from society people with asd would be able to navigate society so much better. Why should nd people have to learn to fit in, it would make much more sense for everyone else to adapt to them.

Sadly I think autism no longer attracts sympathy from the general public probably because so many DCs are autistic including my own DD; in her school year group it's almost commonplace!

I also think a certain type of parent almost revel in their kids' SEN. They see it as a Get Out of Jail Free card whether that be getting freebies, extra benefits, jumping queues, extra help in school etc etc and I imagine that the parents of NT kids are becoming secretly fed up at the perceived "advantages". Someone I know gets a free holiday for her family every year from a charity as her DS is autistic and then leaves him at home with grandparents whilst the rest of the family swan off.

But yes the general public can be absolute cunts. Including the lovely person who filmed my DD having a meltdown on a plane once. Or a nursery friendship group that deliberately excluded us due to my DD's poor behaviour. Or the shop assistant in M&S who loudly commented to me about the other little girl in the queue who was behaving impeccably. I've grown a thick skin over the years though.

I was in a town centre coffee shop at the weekend. A lady came in with an obviously learning disabled young adult who was making noises and waving her hands around as she headed for a table. About 10 minutes later a gentleman arrived with a disabled young man who was shouting 'hiya' to everyone who he went past en route to his table. We just said 'hi' back and returned his smile. As far as I could tell no one really batted an eye lid at their presence. It wasn't a noisy coffee shop either.

Not everyone judges OP, but you do need to develop a thick skin for those who do I'm afraid. And I say that as someone who has 22 years experience.

Most people won’t recognise a specialist buggy as anything but I buggy. I was amazed at the difference when we moved to wheelchair.

not that that should make a difference of course

I saw @hattie43 comment before it was rightly deleted! Such ignorance has no place in todays society. Do you ever wonder why borstals were so full? Yes because they were full of boys with additional needs. I expect your an advocate for their return?

One of my relatives has a facial disfigurement and if people stare, I feel this rage bubbling up. It's like, why can't people just mind their own business? Is he meant to stay indoors for the rest of his life?! It makes me very cross. One time at a supermarket checkout, the woman at the till was staring so much, she didn't see that my relative was trying to hand her the cash to pay. I was with him and I said to her, 'yes, he has (name of disease) and it's very unpleasant when people stare at him'. That knocked her out of her trance!! I later emails the store and asked them to consider refreshing the disability awareness training for their staff.

But please do continue to live your lives as normally as you can! If someone stares or is being obviously rude, I am a fan (as above) of politely calling them out on it. You could try saying (firmly!), 'I noticed you were looking at us. Would you like to say hello? His name is XYZ...' However, I also realise this might be completely exhausting for you!! But whatever you do, I hope you and your family can continue to enjoy days out.

I wonder what this poster was getting at, that it's mostly just bad parenting and our kids aren't really ND. They've always been born, they just weren't recognised if they weren't 'disabled enough'. I know a lot of people in my generation getting diagnoses now in their 40s. They were the ones that could mask, that appeared 'normal' enough, that flew under the radar. A lot of them carry trauma from it, have mental health problems because they viewed themselves as failures and are just starting to understand themselves as ND adults. I'd have no idea about this if I didn't have Autistic DC.

My Autistic DD is very like me and I have suspicions, but no energy or money to pursue a diagnosis. If they'd been born now H and I both have siblings who would most likely have received diagnosis as Autistic/ADHD. All of our DC are Autistic, so probably some genetics at play. Percentage wise there's no real difference in percentage of ND people across the last two generations.

OP people are jerks. Sometimes I step back from going places because of this, or because my DC aren't coping, I suppose they tend to go hand in hand, which makes it harder. If you feel for your own sake or DCs you need to step back for a bit that's ok, but if you don't want to, don't, you and your DC have as much right to be there as anyone else.

It is clearly a difficult topic. Again, I I'm honest, before I had autistic children I probably would have judged families.

Of all the parents of disabled children I know (many) I don't think I've ever seen them just let their child disrupt without trying to intervene (albeit varying degrees of success). I know lots of families who don't take their autistic children out anymore. The problem is the threshold for what is considered 'selfish' is too high in my opinion, so many just don't bother trying.

I think the public doesn't really understand autism and how it impacts people differently, there has been a lot of focus on people who have autism who achieve great things in life, and whilst that's great, people like my child who is non verbal at a special school ,etc etc are yet again ignored unless their behaviour is is extreme and is then viewed negatively.

Yeah, having to constantly explain why they aren't acting like geniuses is a bit frustrating.

Sometimes so is other parents using my children as a teachable moment over and over again, quite performatively. But I really don't know the answer to a very difficult problem.

Someone I know gets a free holiday for her family every year from a charity as her DS is autistic and then leaves him at home with grandparents whilst the rest of the family swan off.

It is likely that trip is respite though. I wouldn’t need that because my child’s behaviour isn’t exhausting but many of the behavioural issues from autism can be and providing respite for parents can be an invaluable way of letting them recharge their batteries to meet the next series of challenges.

See that as their problem not yours @SomeCleverUsername. It is annoying and frustrating dealing with peoples lack of understanding but their ignorance is their own to deal with. You have enough to be dealing with.

This! Some people just don't have a clue how exhausting it can be. Respite is extremely important. Trust me, they are not 'swanning off'. 🙄

I would take my autistic kid to a Michelin starred restaurant, if he wanted to go. The rest of the diners could just deal.

If it’s a family fund funded holiday their fund is very clear that it is to benefit the whole family. If being able to take siblings away for a days is what is best for them rhen good on them!

Nah, people like you are the reason we suffer so much. God fucking forbid anyone with Autism want to experience things.

MNHQ get your thumbs out of your arses and take these threads/comments down and start hitting the ban button.

I thought the pp poster commenting on rising levels of disability wasnt necessarily implying poor parenting etc.

There are lots of academic discussions about whether a) as a society we are not tolerating normal ranges of difference, and are medicalising what in the past might have been considered quirky but normal b) whether as a society modern lifestyle & social expectations are not reasonable for a high proportion of the population, thus resulting rising levels of ND but also mental health issues c) whether there are environmental or genetic factors contributing to rising autism diagnosis (eg the link between autism & older parents).

Modern western society is so narrow. In the past there were probably better options for people - solitary occupations, rural work away from noise & people, no screens, no artificial colouring and flavourings and healthier diets generally, more time outdoors.

@MNHQ if you feel this thread is not helping matters, please do pull it.

I am a genuine poster and although I NC frequently I think I have posted under this name about these issues before.

They still have a right to be there. You can ask for adjustments due to your disability too, for example being seated away from likely triggers. To use the theatre example again, this would involve booking via the access team who will be able to recommend seats based on your needs.

Funny how acceptance and inclusion rapidly evaporates as soon as its perceived to be inconveniencing non-disabled people.

If one of my DC wanted to go to a Michelin star restaurant, I'd take them.

OP some people are just rude arseholes and ignorance/no experience of disability is just a smokescreen for being the aforementioned.

I have no direct experience of disability but I was brought up to understand that you never stare at people, make comments, laugh etc, and that everyone is different and that’s ok.

Families with children who have disabilities are just as entitled to live their lives how they wish to, as much as anyone else, and if you NT folk can’t handle that then look away. Or even better, educate yourself.

@FarmerRefuted

Even when you know it would likely lead to a meltdown?

That's not just selfish it's really shitty parenting

Not sure if anyone has told you but as parents, sometimes we need to anticipate what our children can cope with. And even if they want to do something, if we know they will end up not enjoying it or not being able to cope, we as parents need to make that call to not take them.

My brother has ASD and can't cope with meals out at all, but as a child would always bug my parents to go out to eat. Do you know what they didn't do? Take him out to eat because they knew the second we got there he would absolutely meltdown and our evening would be ruined as would his and everyone else in the vicinity.