So-called support groups and the jerk parents in them

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I have recently had a string of bad experiences with some of these so-called "support" groups. Many of them have kids with mixed abilities - from EXTREMELY high functioning, very verbal kids with just mild social deficits to those who are still in diapers, completely nonverbal and probably intellectually disabled.

While I understand that both groups would have very little in common, what bothers me is the holier-than-thou attitude that those with high functioning kids have. I recently had the misfortune of asking a mom with a high functioning kid about her son's verbal development. She responds with "Oh, it just happened. Don't get your hopes up, but mine just started talking one day !"

Holy freaking cow. Smug and self-satisfied much, b1tch ? I am glad that your kid just started talking out of the blue, but was that "don't get your hopes up" really called for ? I mean, NO ONE gets to pick their kids, it is all a luck of the draw. If I had had any say in the kid I had, I would have had two neuro typical kids ! ! So, it isn't as if you are somehow better than I am just because your kid is "higher functioning" and "verbal".

Then there are those other high functioning kids' parents who look uncomfortable or just plain bored when the lower functioning kids' parents talk about their struggles with a lack of language, toilet training challenges and the like. Makes me question the whole idea of a support group If your idea is to just sit there and act all sanctimonious because your kid is so much "better" than mine is. I don't even feel like opening my mouth at these meetings, for fear of the glazed over eyes and the look of abject superiority when I start talking about how much I struggle with my kid every day.

UGH. Support group, indeed. More like a "make ourselves feel better at your expense" group.

Last edited by HisMom on 01 Apr 2014, 11:52 pm, edited 1 time in total.

Both groups should be separated. One for parents of high functioning kids and one for parents who have kids on the severe end of the spectrum. I don't think parents will be able to relate to the ones with kids who are more severe than their high functioning one.

Actually, it works both ways. I can't relate to parents who have high functioning kids, but then I don't minimize their struggles. It is called EMPATHY and it seems to me that the higher functioning kids' parents that I am running into are sorely lacking in this core human quality. It is a support group, for crying out loud, not a "let's brag about our kids" group. I have an NT kid and some of her classmates' parents are more emphatic that these "support group" parents. One does NOT have to have a low functioning kid to emphasize with those that do.

And the whole "don't get your hopes" comment -- gee, thanks b1tch.

I'm sorry, but I'm not getting "I'm better than you" out of that exchange. It sounds more like "I just got lucky", and advising you not to get your hopes up in that case is good advice because it's dumb to rely on luck.

Are there any other support groups you could join? There's probably not much point in attending a support group if you don't feel comfortable talking during it and some of the other parents frustrate you. If there aren't any other groups, maybe you could suggest forming your own group to some of the other parents who also seem unhappy with this group.

Last edited by Quill on 02 Apr 2014, 12:36 am, edited 1 time in total.

Maybe it is the tone / smirk with which it was said. And, no matter what, giving hope is a good thing. A nicer way to have conveyed the "don't be dumb and rely on luck" is to say, "I got lucky. MAYBE you will, too", rather than try to say, "I got lucky but I don't think you will". If I am dumb to rely on luck, then she was bitchy to say that she does not think I would be. Only God / Higher Power / someone with a high power crystal ball knows someone else's outcome ahead of time.

Last edited by HisMom on 02 Apr 2014, 12:38 am, edited 1 time in total.

The tone does make a difference.

Personally, I would have interpreted being told not to get my hopes up as a way to try to protect me from being as disappointed if I didn't get lucky.

I don't know. I am desperate for a shot of hope, especially when I run into other parents whose kids are LATE TALKERS. This woman's son began to talk at 7, and I do know that a lot of hard work must have gone into making that happen. So, I am not just relying on luck, I want to know what she did - what therapies she got him, what services she accessed etc - to know how she helped her child gain expressive language. I felt like it was just a slap in the face to be told what I was. Of course, I know that my son may be one of those who remains nonverbal, but hope is sweet.

My youngest son didn't start talking until he was 4. We worried about him some but we also had three other kids at the time too, so we didn't have a lot of mental energy to worry. He was developing ok in other ways. I have always said all four of my kids are NT, but now I'm noticing quite a few things about him that make me think he may have AS as well as his ADHD now. He's 19 now though, his birthday was Sunday. He's really not interested in getting checked for AS though, mainly because he doesn't see any of the problems I sometimes see with his behavior and the red flags that I see as well, and plus since there's no cure for it what's the point in going to the dr and dealing with all those tests he says. We can't even get his Vyvanse anymore for his ADHD because now that he's 19 he doesn't have Medicaid anymore and Vyvanse is a very expensive med, and he can't take Adderall or any of the other ones.

Hey, nice to see that you are still around, lady ! !!

My son also has other delays and not just language. I worry a lot about him, but these "support groups" aren't doing it for me, either. I just feel angry and resentful and hopeless.

Just think about this- these smug parents will eventually have either genuinely smug kids, or kids who hate them later in life for being so "up themselves". Believe me, the high-functioning kids will have an equal amount of struggles in their lives, but their parents probably wont be much help.
Your children will see that you're not living through them, and you are looking after them purely because you love them and you're proud of them, self-sacrifice at every turn; something parenthood should always be in my opinion. If you never experience suffering you cannot experience joy, so these parents get their joy from ego boosts while you get yours from parenthood

Some people are jerks, and in a group, it is worse.

There is a difference, though, between not trying at all to relate and not expressing empathy well. Just try to keep in mind, parents of autistic kids sometimes have autism, or at least some traits, as well. And those parents may make less eye contact and display empathy less effectively, even when they feel a desire to be supportive. Whereas not even trying to listen when others talk violates the basic purpose of the activity.

I would just be careful assuming intent from eye contact in a group of parents of kids with ASDs. Doesn't change that, one goes to a support group, one should give, as well as take. And if you aren't getting support, time to find something else.

Side note, I know, but I would not assume that it was some particular concoction of therapy. It could very well have been a epigenetic or developmental switch that came on. There are things that we hit our head against all the time where nothing seems to work and what I hope for is for a light to flash on. For many skills, this is where I am.

It is not analogous to, say, talking to someone who was overweight for years and then they claim to "suddenly" have lost weight for no reason (and you know they were on some diet/exercise regime, were ill, or got surgery or something and that there is no way they lost weight for no reason---Communication can just come on.)

Sometimes, that is what it is, or at least it seems that way. So, dismissive undercurrents aside, the content of what she said was not necessarily dismissive. Therapies not working do not mean to lose hope because you can hope for that switch to come on, while you try to lay ground work either by continuing to do what you are doing or by trying new things (whichever seems more reasonable.)

As an NT, I got the same vibe. I don't think it was a sucks to be you reply.

You might have better luck in a support group where all the kids have some sort of disability, not just ASD, and are on the same ability level.

In our area, the lower functioning ASD adults (with their care givers) have a different support group from HFA/Aspie adults.

How do you know they don't have empathy? I would have a hard time hearing an adult care give vent over things I have no real experience in. I may just sit there and say nothing. What could I possibly say other than, "that's hard".

And when people are on a vent/rant over some basic skill set like feeding/eating, bringing up how that b***h teacher is f*****g up your "mild" kid's IEP seems trite. That not fair either.

Also support groups are NOT group therapy. If that is what you are expecting, see out a therapist who runs those. I've been to both (for different issues), and they are two entirely beasts.

Also remember "mild" still has a different gut churning sets of dashed hopes, dreams and aggravations too.

I get it your angry and need to rant/vent. But if you are this loaded for bear walking into the group, it shows and people react accordingly.

Sometimes groups aren't the right fit. Sometimes our expectations are wrong. Sometimes we are just furious with the universe. Sometimes we are looking for support in the wrong places (support groups when one should see a professional).

I think when you cool off, look and see how much is you coloring the situation with maybe unrealistic expectations and how much the group is a wrong fit.

Good luck. It bites to feel unsupported.

I would also be uncomfortable attending a support group with parents of low-functioning children. It would make me feel that I had not "earned" the right to hear their personal struggles, and that I was eavesdropping. So, I can understand those parents.

Another thing to consider is that autism can run in families. Some of the parents may themselves be spectrum-y, and come across rude when they're trying to be polite. Others may interpret polite statements incorrectly, and be offended *ahem*.

I know exactly what you mean about support groups not being very helpful sometimes. I tried attending one about 2 months ago and lasted only one meeting. It was for parents of newly diagnosed children on the ASD spectrum and because my daughter was 13 and high functioning, I had someone ask me if it wasn't easy because she is older? (I had been complaining because I was exhaused after 13 years of being a single parent.)

Most of them had children who were 3 or 4 and they assumed that a teen would be so easy to raise. My daughter has the coping skills of a 2 year old, so I certainly do not find it easy dealing with her day after day trying to prevent her meltdowns. And getting her to attend school, do chores and take care of herself can be a battle each day.

I think all the parents with ASD children have their own struggles and I don't know why any parent would look down on another. We all need help and support and sometimes it is just too heard to find. Thankfully the kind people on WP are always there to lend an ear.