Something I've noticed about this forum

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When some parents come to discuss their situations, they often describe their ASD family members as objects. They list some "symptoms" or traits, describe the "problem" and maybe what they have done for research or solutions and then ask for help or an observational diagnosis. This is problematic to me for a couple of reasons.
My main point in this post is that these parents that describe their children/spouse in this way never describe how their kids/spouse feels about the situation. Like there's a list of "problems" and a plea for help. I rarely see any evidence that a parent has actually asked their child, "why is this happening?" "why do you do this?" "how are you feeling about ____?"

Maybe these conversations do happen but the lack of introduction of this fact makes me think there is disbelief or a dismissal of their kids' insight and input. My son's emotional state is a very important part of the equation when I weigh his needs. I'm so grateful that he can now tell me what he wants and how he feels. This is another point of contention I have with parents of kids that have never had Speech and Language deficits.
You have had a jumpstart in being able to communicate with your kids. I mean, my son was barely speaking English until he was almost 5. And then even now, he misunderstands and misinterprets common phrases all the time. We really have to work at communication all the time.
So, it's very frustrating to read these one-sided stories, with often one-side solutions being given. I often feel unqualified to help because I only read a fraction of the whole story. I also think it makes parents look like they really don't accept or "get" their kids.

I can't speak for anyone else but my 2 AS sons do not self-advocate and it is hard to get them to tell you how they feel. I ask them on occasion. The oldest one gives a vague answer and the other says, "Decent", or "bad". When you ask him why he is doing something he says, "That's how I roll, Mom, that's how I roll." It is quite frustrating. My AS husband also has the same trouble so I need to help him write a list and he gives it to the Dr. rather than me talking for him, which I try not to do.

I agree KimJ....I find it very difficult to be helpful when someone is approaching the board with the attitude of ....

these are all the problems that my kid is "causing" me,instead of these are the issues which my child is having to deal.

I also resent people coming on "just for advice" and then no follow up.If I bother responding and put time and effort into something,it would be nice to have feedback instead of a passive individual soaking up the information and not responding at all.Are they still there,did it help,do they need further clarification.This is meant as a community and that intells two way communication not just aspies being "encyclopidias" spouting out information.I contribute because I have some empathy(Yes I do, DR smartypants)and would like to know how the child is doing.

Rant over....mostly I try to avoid this foruem because it is bad for my blood pressure.

That being said...there are some great parents here who do get it and have more patience and objectivity then me...so to you,hats off.

Yeah, the disappearing act drives me nuts for several reasons and is another topic (but related).

Blessedmom, I can understand the frustration with not getting feedback but there's more to communication than the overt, "how are you?" "I don't know" kind of back and forth.
Some parents (very recently) have come in with problems that go back several years and no background about how they have been dealing with these issues. It's like many parents are dropping their kids off at school and not even caring about their welfare until they get failing grades, are refusing to go to school or are getting calls from the school office.
Part of me is sensitive because I've never had a chance to believe my son was NT (after 2 1/2 especially). So, I've always known about autism and anticipated situations. Whereas the opposite must happen to parents of AS kids. Their kids seem typical until school age. Though, there are a lot of kids that are dx'ed AS and seem clearly to be simply autistic.

The other part of me gets upset because I remember how my parents dealt with me, 20 years before we knew anything about AS. I developed well until I was 7 and that's where the social problems were obvious-with the Parent Teacher conferences, bullies, out of range emotional outbursts at home, being so very different from my family, literal thinking, not getting jokes, etc et al. No one even looked at my point of view, ever. When I see this, even when it's denied, it drives me bonkers. Here are parents that are so priviledged to have access to information on the internet, libraries, bookstores-information my parents couldn't have. Yet, they are still just in denial, out of touch, objectifying and not very willing to educate themselves.

I don't ask my children close-ended questions. I ask very specific questions about their interests, friends and school. I also ask a lot of questions about how they are feeling. 21 years experience and a degree in Early Childhood Education and Psychology has taught me a few things. I specialize in children with special needs due to neglect and abuse. The emotional, social and communication issues do not differ very much. I can't stand the parents on this forum who assume they are the only ones who know how to treat an AS child. Many of these parents are new to AS, floundering in a sea of information and understandably shaken. No one has the right to judge them when they are only looking for answers in their own way!

I'm probably guilty of being one of "those" parents.

But as blessedmom pointed out, my son isn't able to express his feelings very well, even though I ask. It goes further than the typical teenager stuff. I ask if he had a good day at school and he ALWAYS says "It was GREAT!". Maybe it is always great, I don't know, but I am trying to see if he has any problems or feels bad about anything. I try to reiterate that he can tell me anything, but he maintains that all is well.

The "problems" that he has affect me in that I'm afraid for his future. I would love nothing more than to have him live with me forever -- he is the most cheerful, wonderful child, easy-going, funny, etc. Who wouldn't want a kid like that to live with them forever? But he has older siblings, who will eventually get married and have families -- he will have friends who will also eventually get married and have families. He most probably will want those things for himself. The "problems" that he has currently, even if they have mostly to do with school, are also things that may contribute to his future unhappiness. Especially lately, I'm just worried like crazy that he won't be happy. I've been through this already with one child. He was a lot higher functioning, and he STILL has problems that affect his happiness (he's almost 21). What parent doesn't want to everything that's within their power to help prevent future unhappiness for their children?

So, I apologize if I list problems that I need help with. It does seem kind of detached, but in reality I'm just doing the best I know how to find out what to do to help my child.

Kris

I can't stand the disapearing act too! It drives me nuts not just here but any forum I belong to, about any subject really. Although I am sure some people would love to see me vanish in a puff of smoke here!

I know my son could not advocate at all for himself in the past, and even now it is delayed compared to a lot of 12 year olds. We did A LOT of talking about feelings and outcomes and actions and concquences and making him part of the solution to common problems for the last 6 years, FINALLY it is paying off! I emailed my sons Vice Principle today about an "issue" he had with a student, and the principle was really "on the ball' with it all. What I was really impressed with though was the principle said that he had talked to my son a few times and was really impressed with him over the last few weeks. They have been having problems with a few girls with him, but he did not want me to know! The principle assured me that it seemed to now be "under control!" I am like "wow, this is the first time in his life he was able to stand up for himself without mom!" I don't know though, sometimes I think that parents just may not use the right language and may come off a lot more selfcentered then they really are. Sometimes, parents are clueless, they don't mean to be, they do love their kids, they would move mountains for them, I think many parents may lack understanding of their childs Theory of mind etc, but you have to ask yourself, is it possible this parent may have AS or shadows of it themselves? How can you expect an uneducated AS parent to understand their child, when they themselves are lacking in the TOM department?

Generally, I think it best to educated the parents who come across as selfish or deliberately clueless. I know I did when I first showed up a month ago, and some people still hold it against me. You can't possibly know the whole story between a parent and their child in just a couple short emails. Most parents arrive here not just for themselves, but for the children too, who up to this point, they have not been able to get any real help with or even know what is wrong!

It isn't the clueless parents that first show up that I get frustrated with, it is with those that are resistant to listen and learn.

Blessedmom, I'm not attacking you and I don't see the need for yelling or tit-for-tat. I'm sorry but some of the stuff I read here (and other Aspies have complained about) are flat out abusive and ignorant. We do reserve right to judge when we can see that. It's human nature and often borne out of a defense-mechanism. When a parent comes and complains and refers to their kid as diseased, poorly behaved or abusive-I'm gonna get pissed. Yeah, there are some gray areas and disagreements that aren't that extreme. But there are some real eyebrow-raising moments when a parent ignores their kid for years and years and then panics when they finally hear about AS, autism or whatever it is that their child is dealing with. There's not a lot of time and when a parents waits for years, it's safe to assume they were neglecting them.

I never said I was the only one who knows better, that's a leap if you're accusing me of it. (I can't tell with the smileys and lack of address) There are lots of very knowledgeable people here, who are very helpful. I'm very grateful for the collection of people that I can trust with my little stories and questions. But like Krex said, it's very frustrating to see some of the same questions from people who don't read very thoroughly and never come back to share their successes. It can be very one-way.


Earthcalling, what bothers me about your stories is all the work you have done because other parents (and so-called school staff) wouldn't. I mean those school administrators were sleepwalking. Like I said on another thread, we're all swimming upstream all the time. it's great you haven't had to invoke the Inquisition, but the fear never goes away, even when everyone seems to be listening and following through.

You can't know the whole story but the skeleton is there and it reveals where someone comes from. (the kind of language and perspective they have)

Unfortunately because AS does not always manifest severely in the preschool and early school years, many parents are told that there is nothing wrong with their kids. Or that it is just a phase. I didn't really get fired up about my kids because they are just like me. I am odd and shy and gifted so I figured why couldn't they be?. It wasn't unusual behaviour to me. If T2 didn't have the non-verbal learning disorder that became apparent when he was 11, I would probably still think that and wouldn't be here.

Sorry I lost it, I just don't think this is good forum to judging each other in. There are too many raw emotions.

I am not sure I understand what you are saying here... What do you mean invoke the inquisition?

Seeing that we're on a roll, this forum is not as organized as another one I frequent.

People write way too much of the same thing, no paragraph breaks, misspelled words, and redundency of issues with too much emotional drama thrown in.

The subjects are not very interesting, either (sorry).

I wonder if this is for a younger crew?

Also, who hosts/runs this forum? Does he/she oversee what's being written? There is not enough control over posting (I think).

Just an honest critique.

I hope I am not doing this and if I am I don't mean to. I really am just full of a million questions and confusion and desperately searching for answers that will help my kids. I won't sit here and tell you that I never ask a single question to try and gain some advice to make a situation easier on me, but for the most part I just always feel like I am running out of time and have to get my point across and get the answers before my kids go backwards another step. So to any I have offended I am truly sorry and to any who have helped me I am more grateful than you will ever know.

I could not agree more strongly with this. My son was "different" but in most ways, exactly like me as a child. At the time I missed a lot of his "differences" in not knowing he "was" different. By the time he went to school, it became evident we had some problems on our hands, and I brought him to every clinic and doctor I could afford. I was always told he was a "delightful boy" I was a "great mother" and even though he had some differences, they felt he would be "just fine" in the end and there where "worse" kids who needed help "more". I asked about AS, and was told he was not "bad enough" by both a clinic and a doctor I was bringing him to when he was 7. I thought his learning differences where due to learning disabilities like I had, but was told we could not test for those until he was 8 or 9. I was nieve in the early days, and regularly lied to about his being put on waiting lists for services, I took people at face value, if they said he was, I believed he was! Later on, I found out that he was passed over for other programs like 'reading recovery" becuase he was too bad off, they could help 3 kids in the time it would take to just help him. It is interesting that while doctors where telling me he was not "bad enough to have AS" I had a couple parents of diagnosed aspies TELLING ME they thought he had it too with no prompting on my side! He was written off as an ADHD case, possible Tourettes, and "not that bright" dispite having very high verbal performance on a vocabulary test. Eventually I exhausted all the help available in our area, and not knowing what to do with him, retreated from the medical and scholastic community for several years. Emerging back into it this time, with him at 12 years of age, we are finally getting ANSWERS!

I know some people think I am a joke, others find me infurating, well, I am who I am, sorry if I upset you. Others think I have a very "high opinion of myself". Well again, I really don't and think nothing could be further from the truth. I am just looking for answers too. The problem with me, and maybe due to my own AS tendancies, is that I get very pasionate and enthusastic about the things I take an interest in, and I want to share what I learn and connect with others who are experiancing the same thing. I always throw myself into things 110%, I am learning that it is not appreciated, and I would be best off just to keep my mouth shut. I just seem incapable of it!

I can agree about the people who come here, ask for advice and disappear. I've been a very irregular attendee for the last couple of weeks for personal reasons which I addressed in another thread. Looking at those who have posted here I see a lot of names I recognize and who have posted and responded to answers to their posts and threads. I also see a lot of defensive responces. I think this stems from all parents wondering if they are really doing the best they can for their children, I know I do.

Dealing with Z, my 10 yr old Aspy, and S, my 10 yr old NT [?] with other issues, I often tell them the first person you must learn to like is yourself, after that you can learn to like others and to respect the differences that make all of us unique. I've come to respect those I have met here on WP. I don't think any who has responded to the original idea of this thread needs to worry about being considered as someone who is here one day and gone the next.

Personally I hope none of you shut up and dissapear. I value all of you.

I came to ask avdice-posted 2000 more times and plan to post 2000 more

Go for it, Kilroy! Boy do I have a long way to go to catch up.