I feel terrible for even saying this but…

[schoolie258]

I’m embarrassed to go out with my disabled child. She is autistic. Diagnosed. She’s only 4 but she stims constantly, she’s non verbal but very vocal.
I don’t want to feel this way but I just feel like I hate taking her out anywhere because she’s a handful and people stare and look at her.
how do you get over this? Or deal with the extra attention when going somewhere with a special needs child?
I feel like she’s missing out on a lot of things already because she doesn’t like busy places or playgroup type environments. It’s too busy and loud for her so ends up in disaster and we leave as she’s crying and becoming distressed.
of course it’s not her fault and I love her dearly but I do struggle with public outings. She is still in a buggy because she refuses to walk so people stare and I’ve heard comments of people passing saying “bit big for a buggy isn’t she?”

Why can’t people just mind their business

People almost certainly aren't staring or judging. Its really obvious when a child is stimming, non verbal but vocal that they clearly have additional needs.

As children get bigger its common to swap to a wheelchair or get a buggy tag to "treat as a wheelchair" which helps people understand.

Remember children stare at basically everything, from pregnant people to men with interesting facial hair and people speaking different languages. They are curious and learning, they aren't judging.

My son has adhd and his behaviour is often poor, so I’m a veteran of dealing with judgy comments and looks.

I think 4 is about the peak of it. The child is old enough that there is a behaviour expectation but young enough that it’s not obvious that they’re not just being naughty. He’s 8 now and this has mostly stopped now that there’s not as much crossover between his behaviour and that of a naughty NT child when he’s dysregulated.

Stop giving a shit is my best advice, feels very freeing!

We use a sunflower lanyard in some scenarios- theme parks, flights etc. And if people don’t seem to have realised his needs (eg if they’re asking him to stop making a noise) I use the phrase “he’s not at that stage of development yet” which mostly clues in adults without upsetting him.

We’re also really honest about needs with people who will see him regularly (eg other parents at clubs etc) but I appreciate that’s not for everyone.

Keep your head up OP. It's hard work! People will always be judgemental I'm afraid, but inside, you know you're doing a great job with your child. You will grow a thicker skin and learn to ignore people like this. I also wore sunglasses all the time (mainly incase I started crying from the stress if dd kicked off).
I remember once, dd decided to crawl instead of walk - she was about 7yr- around a shopping centre. OMG, the things people said. Then a lady came up to me and said I was doing a great job and I burst into tears! Good job I had the sunnies on!!!
It gets easier eventually. I think now and the next few years will be bad, then it will start getting easier. Hang on in there and love your child.

My DD isn’t autistic but is very obviously disabled and has a severe learning disability. I’m a massive introvert and hate any attention being drawn to me so I also find people commenting and staring at DD very uncomfortable!
You will find your own way to deal with it. I just block everything and everyone around me out and do my best to ignore any looks or distract myself by keeping a running commentary going with DD “Oh you’re being very loud today aren’t you, what a big noise! Look at all the things in the shop! I wonder if we’ll see any dogs?” Etc etc

I concentrate on my child who is now an adult and ignore everyone else.
I do think there is less judgement as your gets older and it becomes obvious to most people that they are disabled.

Yes I would always intervene to to take or try to take my son away but I can’t control him in advance unfortunately. But we usually stayed at home and kept ourselves away from society for this reason. I don’t think any of this was thought about or cared about when social care was phased out … All the parents I know are the same. They don’t go out because it’s not safe and the general public only know about high level autism and not the severe end of the ‘spectrum’

Remember that most people are thinking badly of you or your daughter when you are out. I think most people are very aware that there are lists of reasons why a kid might be playing up and they don’t assume it’s because the kid is badly behaved. I also think it’s easy to misinterpret ‘looks’ from strangers. If you feel everyone is judging you and your daughter it’s easy to assume an innocent or sympathetic glance is a glare.

I know there are plenty of mean people about but screw them.

Please, what is 'stimming'?
Haven't heard this word before

Mom to a now 18yo Autistic DS.

In the nicest way possible, you have to put your armour on and learn how to NOT GIVE A FUCK.

Yes my DS used to wear ear defenders and an autism awareness lanyard when we were out, and still does.. i get side eyed when people catch me hugging him when he's having a moment, or still giving him orders like he's a toddler, despite being taller than me.

You're always going to get looks, and comments and side-eyes, you just have to learn to ignore it, tell people to STFU, and just get on with your day.

That's really hard @willowthecat and I am sorry. As a society there isn't enough support for families whose children (and adult children) have these severe disabilities.

it's when someone does a repetitive physical motion that provides them with sensory feedback. like hand flapping, or nose rubbing, or hand wringing.. etc.

They can also be vocal, so you might get them repeating a word or phrase to themselves.

Totally agree with finding ASN groups. There wasn't one near me so I set one up which has been great for meeting other parents in similar circumstances.

Funnily enough, I've had the opposite issue - my children are autistic but don't stim in public. Less staring, but the judgement comes in totally different ways. One of my two never eats in public, and I've been accused of abusing them by not feeding them 🫣

"do you not have a park at the end of the road?" has to be one of the most hilarious questions I've ever read on here!

I mean, imagine that!! No park at the end of the road!!

You're a fruit loop @ddfd21 😂

Some people are twats and will always be twats. You can't do a thing about that.

What you can do is find ways to access activities that your daughter enjoys, that she doesn't find distressing. You can also work on things, take baby steps and just because they are difficult now it's doesn't always mean they will be.

Ds is a happy flapper, people stare all the time. He makes noises that some find unusual. He is always wrapped in a blanket, people always love to make comments about that but i couldn't care a less. It's his coping mechanism. I ignore, he is happy and that's all that matters.

He hates the public pool, the noise and how busy it is, it's not something we could overcome. We rent a private pool, he lives his best life when we go!. We go to specialist centres for soft play and sensory rooms. He loves bowling, we go at quiet times and the staff leave a gap between us and other players. People are usually helpful if you ask and it's not affecting them or others. Things that were once impossible we have worked on and he is now able to access these, such as going to the shop. You need to find what works for her and you. That will change overtime.

It gets worse as they get older, people are less tolerant of disabled teens and adults. You need to grow a thick skin and do what's best for you and dd, ignore the twats they aren't important.

I am so sorry that people are such arseholes you don’t feel comfortable going out with your child OP. I have a neurotypical and neurodiverse child and both have constant comments made my older men and women (it’s extremely rare teens or younger aisles ever say anything about or to my children, it’s nearly ALWAYS older people). I can’t imagine how much harder this is for you and I am so sorry. I wish people would keep their mouths shut.

I think that is really unfair, the parents are only doing what works for the child.

Not RTFT so this may have been said already but some of the soft plays have specific times for children who are autistic.
It may be worth contacting your nearest one to see if they have any of those quieter sessions you could go to.
Good luck!

My young adult severely autistic DS loves shopping. He has his mental list of things he likes to look at and talks about them at length at every opportunity.

I’m so sorry you are feeling like this - you sound like a good Mum.
Perhaps look for support groups etc to help you navigate your situation.

Some good advice here too, hope it helps.

I can see this has already been suggested, but a sunflower lanyard might help. People shouldn't comment on things, and it won't stop everyone, but it will make some people stop and engage their brain before they say something.

Do you know what overstimulates DD? I am wondering if ear defenders would help, or something else that will limit the sensory overload. We had a sensory profile undertaken by an OT on our daughter who is nearly 4 and autistic and it had lots of useful suggestions for things to help her. It's a frustratingly expensive option though :(

Ultimately, remember you and your daughter are as entitled as anyone else to be out and about enjoying public spaces.

I use an alternative to a buggy - one of those trikes with a parent handle. It has a foot rest and the long handle also steers. Feels more "grown up" but they can still sit and dont have to cycle if they dont want to.

Don't feel terrible, OP. I think it's understandable. You just have to remind yourself it's not your DD that's the problem, it's the fact that there is so much ignorance and ableism about.

My DD is 12 and I'm often told she "doesn't look Autistic" 🙄 until she sees something that makes her happy or anxious and then she starts flapping her hands like she's about to take off. People do stare. We've even had adults point and laugh on occasion! She also walks on her tip toes and people comment on that sometimes too. I just try to remind myself that most people are basically decent and the twats are in the minority.

DD chooses to wear a sunflower lanyard when out and about in unfamiliar places because she says she feels more comfortable if people around her know she's ND, especially if she has to be somewhere busy or loud where she's likely to find it difficult. To be honest, I do think people are less likely to be twats when she's wearing it, or rather they're less likely to out themselves as twats! But we've been very clear it's her choice and she is under no obligation to either hide or 'annouce' her Autism to anyone.

My top tip would be when you're out and about to focus almost entirely on your daughter and her needs and not on the other people around you (beyond what is necessary for safety purposes e.g. avoiding collision). With my DC this was easy as it was so inense preventing them from running away/ accidentally injuring themselves or others there was literally no time to notice.

Your value as a person is not dependent on the uneducated opinions of other people. You can educate them if you want to but it isn't your responsibility to do so and looking after your daughter and helping her navigate the world is enough, and it can be exhausting educating others your efforts in this regard are better spent on close family and friends rather than random strangers.

If going for the sunflower lanyard option I'd wear it yourself/ attach it to the pushchair in such a way it cannot become a strangulation hazard. I know when my oldest ds was 4 the lanyard would have been swung round at high speed making it dangerous if he had it himself.

You could also practice the aggressive single eyebrow raise and gradually you will develop a thicker skin.

Some amazing advice on here OP, please don’t let few stares and comments make you feel unwanted and therefore miss out on things that you fancy doing. You also need to change your thoughts about how people perceive disabilities in this country; people are generally understanding and not judgemental and if they do then that’s their problem! Go out with your family and have fun x

My DS is autistic and I have a sunflower lanyard clipped on my bag when I’m out with him. He’s verbal and very able in some ways, but I think it’s obvious to anyone with half a brain cell that hears his speech / sees his jumping and stimming that he has autism.

You just have to not give a fuck. Honestly. The more you do it, the easier it all gets. I felt like such a fraud the first time I used a lanyard / used our blue badge / used the disabled loo / used the DLA letter to get a carers ticket somewhere. Now I just do not care at all - my attitude is that anyone judging us isn’t someone I want to know anyway!!