Parents Embarrassed of Autistic Child - What Should I Do?

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BigSister
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28 Jan 2014, 7:55 pm

I've met several parents now who are embarrassed to be seen with their autistic children - heck, I'm told my own father was that way, too. My question is, how can I help make the situation better? It's easy to just tell the parent to get over it, but I don't see that as being very effective. Mind you, personally I have absolutely no sympathy for such parents (sorry, Dad), but I'm looking for the scenario that results in the greatest improvement in the situation, as opposed to the one that makes me feel good.

In most of the situations in my personal life where I notice this, it comes from meeting lots of children on the spectrum's parents and teaching them in conjunction with my sister about autism. Generally I'm not very close to the families, but I educate them about autism and I think I'm starting to get regarded as some kind of autism whisperer by families...which is weird, but hey. So I'm looking for how, in an in-person environment such as this, if I pick up on embarrassment I could address it in a way that doesn't offend the parent and actually results in beneficial change.

In addition, since this unfortunately seems to be far too common a situation, I want to write an article about it for parents on my website. But what do I say to convince the parent not to be embarrassed, or at least not let their embarrassment be visible to their child and/or cause them to limit places they allow their child to accompany them?

Help would be greatly appreciated...thanks!


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yournamehere
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28 Jan 2014, 9:19 pm

if they are imbarressed, than they are already taking offence. that is why narcissistic, and sociopathic parents do more harm than good to autistic children. it leads to some sort of punishment. it would help if people were not soo much self reflecting egomaniacs. when your whole life revolves around a game, and superficial charm, embarrassment from autistic children will pritty much be a dominant feeling.



ZombieBrideXD
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28 Jan 2014, 9:29 pm

i really dont know what to say about this other than the parents are going to have to let it go, and except that people are going to stare and judge.

then again, teaching even severe autistic children proper behaviour is possible, look at Temple Grandin, she was nonverbal classic autistic at 4, and now you can barely tell shes autistic.

it all depends on the parents, if they dont want to take the time and patience to teach their child proper behaviour then they might as well live with it.

my mom was EXTREMElY embarrassed of me, and im mild! she used to yell at me, throw things, hurt me subtly. sometimes she would even walk away from me completely. so i really dont respect parents who are embarrassed of their disabled child.


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BigSister
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28 Jan 2014, 9:38 pm

I dunno about proper behavior...depends on the child and the parent's sensitivity, but my dad still is very uncomfortable when my sister wears a heavy jacket in public for the sensory issues or has trouble in large crowds. I don't know if that's anxiety talking (he's very anxious, wants us to be strong enough to face the world and thrive, basically even in the event of a post-apocalyptic world - weakness is not tolerated) or embarrassment, but I think there is a degree of embarrassment there even over these tiny things.

But maybe that's a good way of addressing it? Start off by saying, look, it's hard if your child is screaming, etc in public, and here are some strategies to deal with it. But then turn around and say embarrassment and hiding said child from the world is not the answer. And then, of course, give strategies for overcoming or dealing with embarrassment.

I feel like I need to keep adding (because at some point I feel like someone is going to jump on me in a reply), I don't have sympathy for parents who find their own child's autism embarrassing and don't want to be seen with their child. I just want whatever outcome turns out best for the child, which means helping the parent change.


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League_Girl
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29 Jan 2014, 12:03 am

I don't think it makes them bad people to be embarrassed by their autistic child. Even parents get embarrassed by their NT kids. It's a matter of fearing what others will think and react. But they toughen up soon or later. I don't know if mine was ever embarrassed of me. I asked my mother once and she said it was an unfair question and I asked her why and she said all kids embarrass their parents. So I guess that is a yes then.

What's so embarrassing about a heavy jacket in public? Also if she has troubles in large crowds, would she be happier if she wasn't forced in them? I can understand why parents would continue taking them to them because they want them to learn to get used to it but if a parent refuses to take their kid in public, isn't that the best for the child because they wouldn't want to be there anyway? I am sure they get embarrassed too by how they act in them and would rather not be there.


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dc2610
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29 Jan 2014, 12:22 am

My entire family is and has always been embarrassed by me. They think I'm weird. They avoid me and rarely speak to me and most of them nearby.

I don't know if there is anything to do or say that would change how people feel. People are very superficial and they only want to look good in front of others. I used to be like that, too. I always wanted to be popular and to have cool friends but when I become friends with these people they always ended up being jerks who tried to treat me like a slave and stole things from me.

Some parents can be immature jerks, too. I know plenty.



cyberdad
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29 Jan 2014, 12:31 am

Are you saying some parents right? I'm a father and I'm never embarrassed to be in public with my autistic daughter.

I'm struggling to think of any parents of autistic kids I've come across (and I've met plenty) who behave like you describe?

Just be careful to not make this a bigger issue than it really is...

Many of us will get a little hot under the collar when our kids play up in public but how much worse is that when you see plenty of red faced parents of NT kids who are acting like brats in public.



cyberdad
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29 Jan 2014, 12:38 am

dc2610 wrote:
My entire family is and has always been embarrassed by me. They think I'm weird. They avoid me and rarely speak to me and most of them nearby. .


I think this is more common than the OPs theory about embarrassed parents.

Yes I've got plenty of extended family who prefer to keep their distance than try and deal with an autistic family member. My daughter's grandparents fall into this category. I think they subscribe to the belief that they have their own problems/issues and don't want to also deal with autism in their precious bloodline.



dc2610
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29 Jan 2014, 1:38 am

[quote="cyberdad"]Are you saying some parents right? I'm a father and I'm never embarrassed to be in public with my autistic daughter.

You're daughter is very lucky to have a father like you. You obviously love her very much.

I'm almost 47 and my mother still complains about my clothes and hair just like she did when I was a teenager. My son (who no longer speaks to me. I'm wondering if he has AS too) used to be embarrassed to be seen with me in public in the winter because he said I was dressed like an Eskimo. I guess if I dressed and looked like Beyoncé and drove an Escalade they wouldn't be embarrassed.

Sigh. Sometimes, you just can't win.

Anyway, I have an aunt who doesn't like to be seen with her daughters because they're younger and thinner than she is. She also gossips about them behind their backs like crazy. They don't have AS so there's that.



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29 Jan 2014, 5:34 am

I think you hardly can change that so easily without professional help.

My dad was the same, he was totally embarassed for me, whenever I behaved somehow "wrong". (Does not mean to be in a bad way like screaming or whatever, but simply because of me as example being more isolated, needing more time or other ways to understand stuff...)

The reason behind it, is because he had no self esteem on his own, but as victim of an narcisstic personality disorder, the only way to achieve for him any way of self esteem was by other people. So he needed others people agreement how fine he was, so that he could feel that way. His own oppinion towards him did not matter, it was only others that mattered.

So because of that, every kind of critism (even stuff that was not even meant that way, like people simply doing a joke without much meaning about my behavior ... a neighbor found it a bit funny, when I passed him on the street, without me mentioning him, the neighbor simply thought funny about it, but made no big deal about it and mentioned it to my father when he did some chatting with him) let him freak totally out. Your daugher is not perfect = your daugher is bad. And your daugher is bad = YOU ARE BAD. YOU ARE s**t. Thats the way he felt about it.

And people feeling that way about themselves, you cannot help, by simply talking some words to them, or whatever. You need professionally therapy, to find the reasons behind all of that, and you would need to convince additional the victims, that there is something wrong with them, that needed therapy. So try convince someone who feels like s**t out of the smallest reason, and tries by all means to avoid feeling like s**t, that he has got a mind disease that needs therapy. -.-

Quote:
What's so embarrassing about a heavy jacket in public?
It makes people aware that your child might not be normal. And so it tells them that you have a not normal child. Which tells them that you are NOT perfect. And if you have trobules with self esteem, people thinking that there might be something less then perfect, is the end of the world, because it makes you s**t. :(

I got thrown a wooden elephant statue on my head, simply because of me not being able to find some photographs he was searching for, that were right in front of me. That is not normal. So that makes me s**t. So that makes him s**t. And me causing him to feel like s**t, caused him to be aggressive, because he did not want me to cause him to feel like s**t.



BigSister
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29 Jan 2014, 6:23 am

To be clear, I'm not talking necessarily about my father here. My dad is just an example I feel comfortable using because he's quite regretful of the way he used to act and spends more time with my sister now. Suffice it to say, though, I've met plenty of parents who don't want to be seen with their autistic child(ren) in public...and then act on that by following through and not taking their child places.

It's not best for the child to not take them places in public because the parent's embarrassed about being seen with them. While that's an excuse parents might tell themselves to make them feel better ("Oh, he/she would not like it anyways"), (1) that's not always the case (if it actually was, I probably wouldn't have noticed the embarrassment) and (2) this is bad for their child. They're sending off messages that will likely eventually be picked up on (Parent: "You're embarrassing." Child: "I'm embarrassing." which leads to Child: "I'm bad.") and teaches their child that their autism is something for them to be ashamed of. Plus, they're not taking the child places with the family, leading to the whole 'separate, not equal' thing. Mind you, when I say not taking places, I mean places that the child would be fine (or even happy) going to and do not constitute a safety risk in any way to the child.

It's not like what you're referring to, Schneekugel, although my sympathies - it sounds like you had a rough time growing up and you never deserved the way he treated you; I would totally report a parent who treated their child in such a way. And, yes, cyberdad, this is only some parents. As you'll note, my mom was not embarrassed, and most of the parents I meet with are not embarrassed. But there's a large enough minority (as others in this thread are attesting to) to lead me to think this needs addressing. And League_Girl, my dad's toughening up came about a decade later, and that's too long for me to feel comfortable with.


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29 Jan 2014, 6:33 am

About a heavy coat in public, like inside a building when everyone else has theirs off.

My Aspie husband does this.

It's a sensory issue. It drives everyone insane, and uncomfortable. Not me, because I know
why he does it.

He did it at work, and was written up. Not professional dress. Can't work in a winter coat. In the summer he'd weigh down a wind breaker. Was wrote up for that too.

We've been at parties where people asked

is he sick
is he bored
is he cold
is he high/stoned (are junkies cold?)


People will crank the heat up in their homes thinking he is freezing. I'll be dying because it's beyond too hot, and so will Jaye. Then we find out the reason why the heat was turned up.

Between the coat wearing, dissecting/sniffing his food and inspectioning every utensil before eating, we don't get many invitations out as a couple. People invited me/daughter.

The meal issuess are ASD related, not to being raised in impoverished conditions.

If I have to go to a social gathering, where Jaye is going to feel uncomfortable, I'll go and he will stay home. Between his social anxiety and lack of pragmatics, it's not worth it.

If you think having a kid with ASD makes people judge, try being an ASD adult who doesn't
blend in well. People just flat out exclude you. There is no inclusion. People want to relax and have a good time. Worrying about someone wandering around with a winter coat on, and seeing him sniff your food and analyze your silverware and plates before taking one does not equal stress free in their minds. And they don't give a s**t about the reasons why. They just don't invite that creepy/weird guy anymore.

My family tolerates Jaye. Just barely. My dad said being with Jaye is a huge stress test, because he is never ever at ease. Being with him isn't relaxing. After 30 years, they have given up trying. They also think ASD is a BS diagnosis for Jaye. It's an excuse for being a self centered, little drama queen, who lives in his own world.

And yes, did try to do the educationing about ASD. Not receptive, didn't care.

I think most people will tolerate a little kid not acting the status quo. All bets are off once you are an adult, from what I've seen/experienced.



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29 Jan 2014, 8:33 am

Embarrassment is a complicated thing.

There are many good reasons to be embarrassed, but you can take it too far.

Embarrassed about something stupid you did? Good....at first. If you're embarrassed about it 10 years later (I mean wanting to crawl under a rock and die embarrassed), it's not a good thing.

Every parent inherently wants a kid they can brag about.

My kid made the honor roll.

My kid got into college.

My kid got a promotion.

Kids on the spectrum (especially severely autistic kids) will likely never do anything the parent can brag about.

That's hard enough to deal with.

But then you have the way the kid may act in public that they can't control...the way SOME (not all) people look and/or react to those outbursts, etc. These cause them to feel embarrassed, and it's largely conditioned.

A child that can't behave itself in public should not be in public. That's common decency. You don't take your kid to a nice restaurant or a movie theater if they can't behave appropriately....that's the social standard. A parent so uncouth to show a blatant disregard for social courtesies should be embarrassed.

However, when the kid largely can't help it...the rules go out the window. Yes, you probably shouldn't take an autistic kid to a nice restaurant (at least ask for a private eating area) or a movie theater (watch movies at home) if they can't behave, but to be embarrassed in public? The old conditioning that applies to a "normal" kid still has its effect on the parents.

It's a double-edged sword. For a parent not to let it bother them, they have to walk a narrow line between accepting their kid's condition and being a psychopath who doesn't let anything bother them. Being sensitive to the needs of others around them but not letting those concerns force them to live in the shadows.

It can really be hard if you take an autistic kid (who normally behaves) to a movie and then, for no apparent reason, the kid starts and outburst in the middle of the movie and forces you to haul him out of the theater as others look on with disgust. Had you anticipated the outburst, you likely would not have gone to the movies, but you expected all would be okay.

Something I've learned is that no matter how much a parent claims to "love" a child, raising a kid is a lot of hard work, and many days, the parent is just happy to have peace and quiet.

There can also be other issues...not just the possible disapproval of others, but the sense that other people feel sorry for them or otherwise pity them for having the kid they have...or that they feel guilty because somehow they may have made the kid autistic or they feel guilty because they feel guilty (yes, it's circular, but it happens).



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29 Jan 2014, 9:34 am

I wish I knew something to tell parents not to be embarrassed by their kids. In my opinion, it's probably a matter of the parent internalizing prejudice against their child. If others judge you and your child for things you and your child can't help, they're the ones who are wrong, not you or your child, so put the blame where it belongs and don't give them the power to deny your child his/her place in society.



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29 Jan 2014, 9:41 am

BigSister wrote:
But maybe that's a good way of addressing it? Start off by saying, look, it's hard if your child is screaming, etc in public, and here are some strategies to deal with it.


Strategies to deal with it are very helpful

Quote:
But then turn around and say embarrassment and hiding said child from the world is not the answer.

Staying at home is not the answer. A better strategy is to find places/times where the child is less likely to melt down (identifying times when there are fewer people for example). Also to find places where what the child does won't impinge on other people either because there aren't a lot of other people or because the other people are doing wild/odd things themselves. If there are any activities in the area that are geared to kids with special needs, that's something to look out for (google can be super helpful since it can identify things that are 5 miles away that you didn't even know about- that happened with me)

Quote:
And then, of course, give strategies for overcoming or dealing with embarrassment.


One strategy is a rehearsed explanation that can be given when strangers try to intervene or a little explanatory card to hand them.



Quote:
I feel like I need to keep adding (because at some point I feel like someone is going to jump on me in a reply), I don't have sympathy for parents who find their own child's autism embarrassing and don't want to be seen with their child. I just want whatever outcome turns out best for the child, which means helping the parent change.


You don't have sympathy for them being embarrassed and other people don't have sympathy for them bringing their kid to location X even though it could trigger a meltdown. A parent can't win.



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29 Jan 2014, 9:46 am

Ettina wrote:
I wish I knew something to tell parents not to be embarrassed by their kids. In my opinion, it's probably a matter of the parent internalizing prejudice against their child. If others judge you and your child for things you and your child can't help, they're the ones who are wrong, not you or your child, so put the blame where it belongs and don't give them the power to deny your child his/her place in society.


So true. When I am out in public, if I see a kid melting down in public and the parent obviously very ashamed, I say something like "it's ok, it happens" to let the parent know I'm not judging them negatively. A parent who doesn't feel social pressure to end their kid's meltdown by any means possible (which can be coercive and hurtful to the child) can react to the child in a much calmer way which is ultimately more helpful to the child.