So-called support groups and the jerk parents in them

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I just thought of this metaphor of a drug support group where some people have an issue with marijuana, and others have an issue with heroine. I can imagine ways that the two groups may not be able to easily see eye to eye.

Getting back to ASDs, politically the high functioning and low-functioning parents have a lot of common goals, although some may see them as competing for fair pieces of a shrinking pie. Still, there are many good reasons for them to work together in political action groups.

In the case of a support group though, I think it naturally leads to a problem where the parents of a non-verbal teen who just put another hole in the wall may get annoyed listening to a parent who is complaining that their child is being teased at school. Both are valid complaints and struggles, and both families deserve support. They just may have a hard time giving it to one another. Besides the barriers to empathy, there's the problem that whatever tricks they may have learned to deal with their own situation will not apply to a child who is drastically different than their own. So they may have a hard time giving each other support or advice.

Me too. I'm not saying she wasn't mean or insensitive about it, but is it possible she meant well and it just came out wrong, or it's something that's just especially hard for you to hear?

I do think a separation would be a good idea, though no doubt it'd cause some trauma to the parents of kids (and the kids themselves) right in the middle, trying to label themselves high or low.

First of all, I'm so sorry you had a bad experience with that support group. Sounds like you've tried a few. Maybe support groups aren't your thing? I've been to a support group for an unrelated issue and I felt very awkward. Just wasn't for me.

I agree that the support groups for parents of higher functioning kids should be separate from parents of lower functioning kids. Personally, my kid is higher functioning, and when I read about the struggles of others the last thing I think about is being smugly superior. Actually, it makes me think that I have no business complaining about lack of social skills when others have kids who can't talk. I have deep respect for those of you dealing with a more severe form of this, but our issues do differ a lot.

This reminds me of conversations I have with parents of NT kids the same age as my AS kid. They talk about the struggles of raising their kids, and they have legitimate worries, but it can sound very smug to my ears and sometimes I want to hate them too.

It might be possible to have separate groups for parents of verbal and nonverbal kids, or divide based on something else. But Tarantella is right about problems for those caught in the middle. And there will always be those caught in the middle if you're drawing a line. I can see the advantages, but not sure it's worth it to divide this way.

I think it's good to manage expectations but I also do believe that there is plenty of evidence showing that many autistic people can and do learn to talk, even if late and even if not ultimately as fluently as the general population. What I've read in my online forays is that the brain is constantly making new connections, even long after people think the "window of opportunity" has passed. Sometimes it just takes a series of the right experiences for that magic to happen, to enable that specific connection to spark. There are some people who do not make the leap to speaking, but regardless, the full conscious and aware person is still in there, verbal or not. Reading that book, The Reason I Jump has made me understand even moreso the incredible inner workings of people who for whatever reasons cannot or do not communicate verbally with others, showing they have very rich and articulate thought processes and an incredible amount of empathy. It is simply a matter of coaxing it out, finding the right key. At least that's my theory, and I'm sticking with it! So do not ever give up hope. Nobody should ever feel hopeless!

Thank you all for responding.

I do get what y'all are saying about me just not being a "support group" person and about expectations management. I have been thinking about this -- my expectations from a "support group" is not really for tips or techniques on how to help my kid progress (though that would be nice) but emotional support.

ASDMommy was spot on when she said that it may not have been any particular therapy that helped the other lady's son start to talk at 7. It may just have been a sudden spark that brought expressive language out, and obviously, there is nothing that she can truly share with me on how to bring about that spark. That part I get. What I got upset about was the comment itself, and the tone. That wasn't what I had expected from a support group.

Maybe I misunderstood how a support group really works. I walked in expecting moral and emotional support, vis - a - vis advise on intervention / therapy etc that one would normally associate with a "training" or an "advise" group. Maybe it was just a case of me misunderstanding semantics ?

However, I talked to a couple of other parents with kids who are even more affected than mine is (never thought that any kid could be more severe than my own, but oh my god, those poor parents) ! ! And these folks told me that they felt the same thing -- that when they spoke about how their tweens were still not toilet trained, and tried to chat with parents with higher functioning kids, they got the vibe that these parents did not feel like they had anything in common with them ! !

I don't know how to explain it but a lot of things felt awkward - it seemed uncomfortable, and not at all "supportive". Instead, it felt as if two very different groups of people had gotten together to talk about issues and things that members of the other group had never experienced but were expected to understand / empathize with.

As I said above, what personally got my goat was the "don't get your hopes up" comment. Someone suggested that some parents of kids on the spectrum may be autistic themselves and misinterpret polite comments as rude ones, but I am not autistic, although I do feel confused and overwhelmed these days about my son's progress (or lack thereof). I don't think I walked into the first few meetings with a desire to feel bad or "left out". I honestly didn't, but I did find myself becoming more and more resentful as time went on, but couldn't put my finger on it, and I eventually just stopped going.

I do know that autism is autism and those parents have their own challenges. I would never ever discount their struggles just because they are different than the ones I have, but I just don't know if I could sit here and in all honesty say that I felt understood or empathized with. If I had attended such a meeting with the intention of seeking language acquisition advise from those whose kids had always talked, then I can understand how utterly ridiculous that would be on my part. But that was not what I was looking for. I was just looking for empathy and support about how difficult life has become, and was looking for coping strategies, and i felt that I wasn't going to get it there. Again, it may have been me, misinterpreting the purpose of these groups, but then again, maybe it was not.

Anyway, I really wish there was a way for me to truly get & give moral & emotional support regularly. Autism is a hard journey, but the accompanying loneliness & isolation is sucking any joie de vivre from my life. I have no family around and most of my friends are parenting NT kids. And they certainly certainly don't get where I am coming from, although they do empathize to some extent !

So come here, HisMom. We are mostly a pretty supportive bunch.

And I'm sorry, what I meant about parents being on the spectrum themselves wasn't referring to you, it was that you said other parents in the group were not showing empathy, I was suggesting they might have trouble doing that. But it was a question, you were there, I was not. Go on your best judgment.

Can I suggest a few things?

First, you don't need the entire group to support you. You need a few people who get what your life is like and can empathize. Beyond that, though -- because you guys are so stressed, and because you personally have little help -- you need people who *aren't* going through this, and have some breathing room and spare strength in their lives, but are sympathetic and willing to help you in practical ways, take some stress off, provide a bit of respite.

Maybe the group is helpful in just introducing you to some of those people. The support doesn't have to happen just at the meetings.

Beyond that, I take it there's no way to move closer to family or stronger support services?

And beyond *that*, I'm glad you're able to speak with some honesty about how hard this is, and hope you go on feeling free to do that. I get the impression that there's a lot of pressure, sometimes, on parents to play down that aspect and just talk about what a blessing it is, etc. But it does look relentless and at times scary, and parents are people too. So I hope you can have those conversations when you need them, here and with people from your group.

Tarantella64 brings up a good point. If you have gotten contact information from the helpful attendees, you can just stay in touch with the people who are best suited for what you feel helps you. If not, then you could go one last time, if you can stomach it, and just collect the contact info then.

What your expectations are for a support group is verbatim, what my social worker says at the start of my bipolar group therapy sessions.

Support groups are more or less social outings to connect. It can be topic driven. It's chit chat and light talk. UNLESS the person running the support group is a professional, and you are paying for the group. Grief support groups are like that. They'll have a therapist who is qualified to handle all those heavy emotions.

My ASD husband goes to a monthly support group. They specifically state this is not a counseling session, and please don't use it as such. It is peer runned, and no one can give out advice on depression etc. They only thing they can do if some is emotionally having a hard time is hand out the county mental health crisis number. That's it.

Now, the center that diagnosed my husband does run a support group with a therapist for parents of ASD kids, and it does delve into that emotional aspect. You pay for the sessions and the group is capped at 12 people.

It might be worth looking into a counselor driven group. This way, the counselor keeps everything on an even keel, and everyone feels validated. The above support I talked about has parents of LF and HF kids. It works because a trained professional can keep everyone being supportive of each other even with seemingly huge differences.

Let me start out by saying that I've never gone to one of those face to face support groups. My child is "low functioning" but capable enough to be a danger to himself so we just can't get a sitter. That being said, I also contact another at-home father over the telephone on a weekly basis and though our situations are different it allows us to get an outside perspective on each others' challenges in life and give us bearing in what needs to be done. This other person HAS been to support groups and has expressed frustration at attending them because many of the other parents have axes to grind or simply are unwilling to listen and are expecting just have a forum where they can rant. Lord knows I'm guilty of that but I think listening is key.

In your experience, I would say that the other person felt compelled by her success to try and help out in whatever way she can. Clearly her delivery could have been better but I think it came out of a sense of camaraderie with you and the rest of the group. I think what she was trying to say that though she was in a similar situation at one point, she's come to the realization that each child labeled with "autism" is in fact unique and may (or may not) progress at their own rate. All you can really take from that comment is essentially that she didn't have an answer and didn't want to disappoint you. It's unfortunate that she offended you, but that's easy to do when the person being offended is already under a lot of stress.

That being said, there probably are people out there looking to gain ideas from others with similar situations but their lives may not even be touched by autism. I'm starting to realize that a lot of the practical solutions I've had to employ in my family's daily living are shared by those with the situation of taking care of aging parents with dementia (where their home has to be "safe" for people who may be a danger to themselves) or with older children with substance abuse problems (whose "seeking" tendencies rival in intensity to those with OCD.)

My point is that it seems like you're looking for practical solutions from this support group but not getting them. If so, then yes I'd look elsewhere. On the other hand, if you respect this other person in any form and value at least some of her advice then fuming about it later is going to essentially poison your mind against drawing any useful advice there. If you're going to go back, I'd take her aside and be honest with her. It may be that she didn't intend to come off that way with you. Take it from somebody who has chronic "foot in mouth disease."

First I am really sorry that the support group wasn't supportive. It takes a strong and brave person to admit they need help and then not to get it, really can feel defeating. I don't know those folks, but all I can say having a child with autism doesn't make you any better a listener than you started, esp when you are in the middle of it. Your loved one's disability, crisis or illness can be an amazing lesson and cause personal and spiritual growth. Does is every time or even most of the time, nope. I bet many of those parents are not there for support, they are there because it was on the 100 day list or their family therapist pushed it. Others are so deep in their own struggles, they have no support to give others.

I have a little guy who is high functioning on the spectrum, he has some serious speech delays and is nowhere close to be ready to mainstream educationally or socially into kinder, so some might think he is in the middle. When he started his HFA preschool in Dec he was the only kid out of 10 who didn’t speak(he had words but didn’t use them). However, I must say that I feel really uncomfortable with parents who have lower functioning kids. I feel like I don’t belong in the group. They have real struggles, real pain. I can’t offer advice and my empathy seems more like pity when they realize I am not facing the same struggles. It is like being in a support group for amputees and I had the tip of my finger cut off.

The truth is my son is an easy child to parent. He is very affectionate and engaged with us. He has no health problems or sleep problems, he doesn’t bolt, he rarely has tantrums and is potty trained. On a day to day basis we don’t struggle with his autism. I still worry about his future and protecting his happy, easy going nature. I get that 4 for him is great, but 8-9 might be bad and 13-17 is really a whole different universe of issues. I know at some point his hyperactivity will be an issue for his school and I will have to deal with the medication issue/battle. I don’t say this to brag, but both to explain how I feel about mixed groups and to highlight it isn’t always clear what the middle means, or any other place on the spectrum.

I recently went to MeetUp for find a playgroup for my little guy. I found a HFA group for 4-8yrs in my town. I saw ones for old kids too and support groups. It might be a great way to find parents that are more like you and are more supportive. If one doesn’t exist, then you could create one. I come here more for advice which has been great and for information about the future, but I have found support. While you are working for a better in person support group maybe this could be a good place to start.

I don't get your reaction. What's so smug about that? I mean, some kids start talking and others don't, and there's no way to predict it.

I've told parents similar things when they asked about my milestones. I wasn't saying I was better than their kids or anything, quite the opposite - I was saying I didn't do anything special to end up as high functioni ng as I am, and I can't give them some steps to take with a guarantee that their kid will turn out like me.

Are you sure the issue is her attitude, and not you being jealous of her?

You don't know. There are some kids who just go through a developmental spurt for no apparent reason. Seven is a bit late for that, but not unheard of.

Jealous of her ? Why would I be "jealous of her" ? So you think parents of kids with lower functioning children must be JEALOUS of parents with higher functioning kids if they have a disagreement with them ?

Your answer that you did not take "any special steps" shows how misinfomed you are about child development and I will address that in my next post. While you can obviously not give any guarantees about anything, did you really have to tell them that you cannot give them any guarantees tht their THEIR kids will turn out to be like YOU ? You are so special that you think parents would want their kids to turn out like YOU ?

And, after typing this out, and asking me if I am jealous of the other parent with a high functioning kid, you want me to believe that you don't think and you WEREN'T trying to tell those parents that YOU weren't better than their kids ? Or even THINKING it ? I totally buy that !

Last edited by HisMom on 14 Apr 2014, 4:12 pm, edited 5 times in total.

What is your academic / professional background that you may these claims ?

Child development follows a predicted path. There may be a some variation in terms of timelines, but for the most part, A must happen before B can happen, following which C may follow. Sometimes, C may occur without B, but there will still need to be other pre-reqs that had to be met, before further development can transpires. This is the theory in GENERAL.

This is where autistic children run into problems. They may be "stuck" at a certain stage for an inordinately long period of time, and may not seem to move forward. Contrary to your beliefs, there is a LOT that parents can help to move their kids progress, although there are NO guarantees that the child will definitely meet the milestone(s) in question. At the end of the day, autism is a disorder of development, not developmental STASIS

Now, when I ask parents what they did to facilitate language development, I am basically asking for what remedial measures were taken to facilitate development of missed / pending milestones. I ask this, because I hope to then do the same work with my own child in the hopes that he may hit some missed milestones and make progress. It is hope, not a given, because as I said elsewhere, it is difficult to say why some kids remain nonverbal despite intense early intervention. Development spurts, however, contrary to your belief, rarely happen for no reason. It is possible but entirely remote. Most likely, the child was working on and gaining the prerequisite skills, and once these were in place, the child may have seemed to have had a huge, developmental spurts, which may have seemed drastic and unexpected to the untrained eye. But a thorough analysis would show that in most cases, the spurt was to have been expected, given what else the child accomplished in the previous months / weeks / year.

Thing is, some kids do gain all the pre-reqs but still never gain any verbal speech, which is why I agreed with ASDMommy that she was "spot on" when she said it is difficult to say when the light bulb will go on, and not because I think that the PROCESS of child development is a mystery which can only be solved in the next million years.

And, in any case, I beg to differ with you that 7 is a LITTLE LATE but not unheard of as an age in which "developmental spurts" can happen. There was a study published just last year that said that many kids who were technically nonverbal at age 4 talk by age 8. On this very board, there is a wonderful, autistic adult who told me that she began to talk at age 8. A friend of mine in a small, Midwestern town had her son utter his first words at age 14. He now works part time (at age 21). There are documented instances of people who talk very late, and 7 is not the "outlier" that you claim it is, at all, although it is certainly outside of the range in which you would expect language to develop in a typically developing child (who is not the topic of our discussion here).

Now, does this mean anything at all for my SON's development ? Unfortunately, it does not, and he will talk IF he catches up on his prerequisite missing milestones. I say IF not WHEN because of the uncertainty of predicting WHEN the "spurt" would happen for him, even after he meets all his prerequisite milestones. Thing is, I can only work as hard as I can with him, and leave the rest to God / Universe / Higher Power / what-have-you.

But I still like to converse with parens and ask for what they did to help their kids meet milestones... Shared knowledge is power.

Of course, once in a while, there are those who tell you to "not get your hopes up" but you just ignore the ones who are showing off from the ones who GENUINELY mean well but don't have any idea how to help you, because they too believe that the developmental spurt "just happened".

Last edited by HisMom on 14 Apr 2014, 4:31 pm, edited 1 time in total.