Stigmatisation and marginalisation of parents of ASD kids

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B19
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23 Oct 2014, 6:50 pm

http://www.autismnz.org.nz/__data/asset ... roject.pdf

This is a comprehensive and thoughtful study of a topic that has been largely neglected. I hope you will find it validating and enlightening.



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23 Oct 2014, 8:06 pm

I only read the conclusion. Very true!! How did you find this, it's so much my experience from what I read?



B19
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23 Oct 2014, 8:39 pm

I started to search because my daughter (NT) has fraternal twins aged 7. One is on the spectrum (like his father) and one is not. In conversations with her I have noticed that she seemed not only scared of him being rejected but also of being rejected herself (she is very much involved with her local community) and I suspect that she has experienced rejections from other mothers that she has not disclosed to me. She keeps her son's ASD status "in the closet" for this reason, I think, to protect him, though she is for certain aware of it. So in order to help her and support her, I wanted to understand the phenomenon better - the marginalisation of parents with ASD children, and its impacts on them personally, not just on their parenting. It was hard to find anything relevant at all.

Of course I am in New Zealand and it was only a coincidence that I found this New Zealand study by searching on Google.



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23 Oct 2014, 11:01 pm

I think people judge more on the child's behavior than any label. Being marginalized was hard, and then I started to marginalize myself as I discovered that I needed to keep our experiences relatively quiet to maintain the few connections we had. Or maybe that people generally did not relate to me, nor I to them, beyond a certain point. And seemed to want me and us to disappear.

Glapd you posted the link!



DW_a_mom
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24 Oct 2014, 10:12 am

I only read parts, but it was really interesting. I guess we all experience at least pieces of that at some point to some degree, and it is interesting to think about what that means for our own mental health.

Even without stigma, you tend to be on a different path than NT parents, which reduces your opportunity to build strong bonds with them. So we get hit from multiple angles.


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YippySkippy
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24 Oct 2014, 11:59 am

I've never tried to join a "mommy" group, so I can't comment on that. But I can say that my kid has never been invited to a birthday party, and was told to stay away by the neighbor (despite her kid wanting to play with him). I've gotten a million odd looks that range from questioning to pitying to outright hostility. One time a man complimented my son's shirt, and his wife immediately yelled at DS for not saying "thank you".
So yeah, I feel a lot of rejection of both myself and my son. Everyone seems to be aware that autism exists, but no idea what it looks like and no expectation that they might actually encounter someone with it.



DW_a_mom
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24 Oct 2014, 12:31 pm

B19 wrote:
I started to search because my daughter (NT) has fraternal twins aged 7. One is on the spectrum (like his father) and one is not. In conversations with her I have noticed that she seemed not only scared of him being rejected but also of being rejected herself (she is very much involved with her local community) and I suspect that she has experienced rejections from other mothers that she has not disclosed to me. She keeps her son's ASD status "in the closet" for this reason, I think, to protect him, though she is for certain aware of it. So in order to help her and support her, I wanted to understand the phenomenon better - the marginalisation of parents with ASD children, and its impacts on them personally, not just on their parenting. It was hard to find anything relevant at all.

Of course I am in New Zealand and it was only a coincidence that I found this New Zealand study by searching on Google.


I am sure it varies by community but I've found it really helpful for both me and my son to be much more open about my son having "special needs." I don't usually go into detail about it, but I do usually note that he does have a diagnosed special needs condition. That gets rid of the judgmental people, and attracts people who also have special needs kids. Overall, I've been very careful to keep him at welcoming and accepting schools, teams (when he did sports), and so on. There is no time in my world for people who want to be judgmental; there are enough people around who won't be. But it also took time to learn that, and find the right people. Our early years together were, at times, pretty challenging. It got better in elementary school, when I was really involved with the school and other parents. But, as I indicated in my first post, when the kids get older and share less interests, you end up isolated again simply by circumstance - our kids have different interests and the opportunities to organically mingle are gone. I really, really, really felt that loss when my son hit middle school, but I could hardly ask him to choose his friends and social activities based on my social needs. You definitely learn to shut out the opinions of others, be a strong advocate for yourself and your family, and choose true friends carefully when you have an ASD child. The worst is when you have family that isn't helpful or understanding - I do, at least, have supportive extended family and your daughter will benefit greatly from knowing you are on her side.


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Waterfalls
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24 Oct 2014, 1:09 pm

YippySkippy wrote:
I've never tried to join a "mommy" group, so I can't comment on that. But I can say that my kid has never been invited to a birthday party, and was told to stay away by the neighbor (despite her kid wanting to play with him). I've gotten a million odd looks that range from questioning to pitying to outright hostility. One time a man complimented my son's shirt, and his wife immediately yelled at DS for not saying "thank you".
So yeah, I feel a lot of rejection of both myself and my son. Everyone seems to be aware that autism exists, but no idea what it looks like and no expectation that they might actually encounter someone with it.

Yes, so totally true!! A lot of strange looks and a lot of rejection.

Life is too short to live judging and being judged. DW is right about that. It is hard though, sometimes.



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24 Oct 2014, 3:51 pm

You get the same thing when your kid has any type or variety of "alphabet soup." I don't know what happens when your child has an observable, physical disability (crutches, a wheelchair, a missing or withered limb, even Downs which comes with readily recognizable physical features); I have a cousin with CP and (assumed) profound ID (she could be a bloody genius, for all we know, but does not have the motor control to communicate even with assistive technology) whose mother says you get a lot more empathy when something is "obviously 'wrong'" and there can be no doubt that it's not a choice.

I don't know exactly why it is. I know that people are uncomfortable with anything that falls "outside the box." They don't know how to handle it, it frightens them, and a lot of them don't want to learn.

That's being charitable. Frankly, I think a lot of Homo-allegedly-sapiens are just selfish, nasty, lazy, judgmental, all-around foul people who are looking for reasons to look down on and exclude others because it makes them feel high-and-mighty and better about themselves. Basically, you can't have an in-group without an out-group; most folks want to be in the in-group, and so it actually feels good to put someone else in the out-group.

I'm lucky. Asperger's means that I really don't give a crap about fitting in. I never wanted to be invited to their stupid playdates and coffee-klatches anyway. I showed up for the first few Friday mornings of preschool...

...and when they started excluding me, all that meant to me was that I had my Friday mornings back, got my housework done by noon, and had more time to goof around on the Internet and play with my kids. The coffee-klatch, with the obligatory Dueling Disney Vacations and discussion of Make-up, Cute Layettes, and Sparkly Heels for Little Girls basically bored me s**tless. The "truly cool" (read: geeks, nerds, rednecks, moms of special-needs kids, and people dealing with mental illnesses of their own) still want to hang with me once in a while, and the rest of them can take a flying f**k at the moon. They don't have anything more to offer me than I have to offer them...

...and, while I will of course be polite to their Perfectly Normal Children if we meet in public and make them welcome in the unlikely event that they come to our home, I can certainly understand how the parents feel. I am guilty of reverse-stigmatization and normal-marginalization: Realistically speaking, I was a bullied kid, and I don't want my kids to grow up hanging out with people who are being taught to have that attitude. The "Stim Squad," and their parents, are soooooo much cooler anyway.


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24 Oct 2014, 7:33 pm

Yeah...autism is the loneliest thing that ever happened to me. The other thing that adds to the mental stress is that I feel guilty about being unhappy. I did go to all those mummy-and-me things- and it was really hard for me to get excluded when my son wasn't acting normal. I cried to my husband and he didn't get it...he's been excluded his whole life and I hadn't. That should make me feel lucky...

I have a few friends now - other parents of autistic kids. But even the "autism parents" are so divided, there really isn't much selection for friends.

I think it works both ways though- I don't want to be friends with parents of NT children either, sort of. Maybe it's partly because I'm still bitter about being ditched, but it's also partly because we'd have nothing to talk about. When my eldest was 3, I still had a few friends left, and we were at the park. My son was lying on the ground rolling a marble back and forth for the entire hour. Her son kept running over saying, "Mummy, look at me! Look what I did! Look I brought you a present! Look! Look! Look!". Despite the fact she could see my child never interacted with me even a little bit like that, she kept complaining about how hard it is to have a kid who wants attention. I felt so much anger and sadness... We never hung out again (though we ended on "good" terms), and I think honestly, it's partly because I didn't want to hang out with her. What I would do for my son to say, "Mummy, look at me", you know?

I agree to an extent with BuyerBeware about the judgement when the disability is "invisible". My younger son drools (unrelated to autism) and he's always gotten more compassion than my older son. But then again, he's also more smiley and friendly, so maybe that's why. Having said that, my older son is now big enough to also clearly disabled, and I find we get different reactions, but not better reactions. We get more people avoiding us, mostly. It's not a nice feeling to see a mother "shielding" her child from you as they hurry past.


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B19
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24 Oct 2014, 7:41 pm

I think there must be an enormous amount of hidden suffering going on in the parenting community of ASD children. Social exclusion is the hard edge of prejudice and discrimination.

Sadly I suspect that some of the "hurriers by as if you were not there with your ASD child" are the same people who cheerfully parrot cliches like "it takes a village to raise a child".

I sincerely hope this topic does move more into the public domain.



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24 Oct 2014, 9:33 pm

Holland--

I don't think you should feel lucky at all.

I think it probably hurts a lot more to have "a place inside" and lose it than to never really have one to begin with.

At least, that's the conclusion I came to in college, trying to hang out with my husband's friends. Rejection hurt a lot more after I'd actually been given reason to nurture the hope of being accepted.

It's like being outside in the winter-time: You bundle up warm, and after you've been out there for a little while, you don't really notice the cold. You're not comfortable, exactly, but you're not shivering and miserable either. If, however, you come inside and get nice and warm, it is much harder to go back out into the cold. And you have to get used to it all over again.

So, no, actually I would say that your husband is the lucky one on the "dealing with the marginalization of having autistic kids scale." I think it is much, much easier to take if you are at least a little bit autistic yourself. Not to say it is comfortable, or painless (it isn't, not by any stretch of the imagination). But-- remember what I said about what getting rejected for myself meant for me?? It stung for a couple of months...

...and then I remembered that I really seriously didn't enjoy their stupid coffee-klatch anyway. I'd rather come home, wash my dishes, and hop online and talk to you people.


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25 Oct 2014, 3:12 am

A very good thread. I am going to make a special effort to befriend a woman at my rugby club whose son is autistic and is in my coaching group. It's not super easy, because she works with her other son's age group while her husband works with mine. I've been a bit obsessed with my own problems lately (they are legion) - but I will make the effort.



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25 Oct 2014, 6:14 am

elkclan wrote:
A very good thread. I am going to make a special effort to befriend a woman at my rugby club whose son is autistic and is in my coaching group. It's not super easy, because she works with her other son's age group while her husband works with mine. I've been a bit obsessed with my own problems lately (they are legion) - but I will make the effort.

I am glad, and maybe it will spread. It was hard to make friends as an Aspie, but it was possible. As an aspie mom of an Aspie kid, no. I haven't found a way past both to having friends. I hope she is better off. But you never know---so if she is a little clumsy at the friendship thing, she may just be out of practice......



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25 Oct 2014, 5:33 pm

Quote:
It was hard to make friends as an Aspie, but it was possible. As an aspie mom of an Aspie kid, no. I haven't found a way past both to having friends.


Yes. This has been my situation for years now. It doesn't help that I'm the reserved-awkward type, and DS is the outgoing-awkward type. I feel uncomfortable enough in social situations on my own, but with him constantly drawing negative attention to us I just want to run away.



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25 Oct 2014, 6:53 pm

elkclan wrote:
A very good thread. I am going to make a special effort to befriend a woman at my rugby club whose son is autistic and is in my coaching group. It's not super easy, because she works with her other son's age group while her husband works with mine. I've been a bit obsessed with my own problems lately (they are legion) - but I will make the effort.


Good for you. Reading that warmed my heart. The willingness to reach out builds bridges and tears down walls. Even small gestures of connection can have such a huge positive impact on people.