Am most grateful to KaloJaro for the supportive endorsement, much needed at the moment (and yes I do have some biases that slip in occasionally).
There are also very good suggestions here, particularly about providing a board for discussion topics, on current or stimulating themes,and the possibility of having expert input.
What has concerned me for a long time is whether any experts read the postings, or take up any themes for further investigation. Alas if indeed anyone is a position to change understanding of autism reads these posts, they don't seem to learn anything from them, and I suspect don't consider we have anything to offer them. Particularly it seems to me that people on the spectrum are considered not to have an opinion worth taking seriously - something not uncommon amongst professionals.
This in part is why I feel my efforts are inadequate. I'm still giving similar advice, though I think it improves with practice (perhaps....). Understanding of autism seems to stand still. The same questions are still being asked, and there are no new answers.
I've been accused on here (by Mods particularly) of being overly negative. Why cannot I give positive messages?
I guess part of my problem is I'm on here too often for my own good. As others have said in various ways, you get "punch drunk" on the same cries for help. We don't get stress counselling or any other kind of support, yet this forum has often been a last resort place for seeking reassurance or solutions, and we are all exposed to it, whether we try to answer of just read.
The notion that this forum is just a chat room where we talk about things like baking cup cakes (according to "Your Autism Magazine") is miles from the truth - this forum is in the front line of desperation.
The Mods keep saying information is on the website, and a few messages back, Bob_C Mod gave us a link to a blog by the help line about how the website is being improved.
Perhaps if more people consulted the website and commented here, it might help. I've just a few minutes ago had another try at using the website. It doesn't make sense to me. Links don't provide answers. Some video clips are YouTube only - ie not supported on this site. Lots of pages just aren't what they say they are. I don't think the website is much help at all. That may be me being overly negative and unhelpful, so perhaps other users of the forum could take a look to see if it is just me being awkward.
I'm still confronted by the Triad of Impairments being used all the time to explain life with autism. The Triad is a diagnostic tool. It looks for characteristics which cannot be confused with other conditions, like schizophrenia, hence for example it misses out hugely on sensory issues. The website only lightly touches on sensory issues, sensory overload and stress - even though these are common and critical issues for many.
NAS Mods will probably now tell me off for being too negative again. I think I'm trying to be positive. I'm positive improvements are needed, especially in the way the website conveys information, and the kinds of information it contains.
I cannot comment on the helpline. I haven't used it. I imagine the helpline team are stretched.
But the upshot is, many people seek this forum to resolve their problems. NAS is insensitive to treat this as just a chat room. Whether rightly or wrongly it has become something else altogether.
Am most grateful to KaloJaro for the supportive endorsement, much needed at the moment (and yes I do have some biases that slip in occasionally).
There are also very good suggestions here, particularly about providing a board for discussion topics, on current or stimulating themes,and the possibility of having expert input.
What has concerned me for a long time is whether any experts read the postings, or take up any themes for further investigation. Alas if indeed anyone is a position to change understanding of autism reads these posts, they don't seem to learn anything from them, and I suspect don't consider we have anything to offer them. Particularly it seems to me that people on the spectrum are considered not to have an opinion worth taking seriously - something not uncommon amongst professionals.
This in part is why I feel my efforts are inadequate. I'm still giving similar advice, though I think it improves with practice (perhaps....). Understanding of autism seems to stand still. The same questions are still being asked, and there are no new answers.
I've been accused on here (by Mods particularly) of being overly negative. Why cannot I give positive messages?
I guess part of my problem is I'm on here too often for my own good. As others have said in various ways, you get "punch drunk" on the same cries for help. We don't get stress counselling or any other kind of support, yet this forum has often been a last resort place for seeking reassurance or solutions, and we are all exposed to it, whether we try to answer of just read.
The notion that this forum is just a chat room where we talk about things like baking cup cakes (according to "Your Autism Magazine") is miles from the truth - this forum is in the front line of desperation.
The Mods keep saying information is on the website, and a few messages back, Bob_C Mod gave us a link to a blog by the help line about how the website is being improved.
Perhaps if more people consulted the website and commented here, it might help. I've just a few minutes ago had another try at using the website. It doesn't make sense to me. Links don't provide answers. Some video clips are YouTube only - ie not supported on this site. Lots of pages just aren't what they say they are. I don't think the website is much help at all. That may be me being overly negative and unhelpful, so perhaps other users of the forum could take a look to see if it is just me being awkward.
I'm still confronted by the Triad of Impairments being used all the time to explain life with autism. The Triad is a diagnostic tool. It looks for characteristics which cannot be confused with other conditions, like schizophrenia, hence for example it misses out hugely on sensory issues. The website only lightly touches on sensory issues, sensory overload and stress - even though these are common and critical issues for many.
NAS Mods will probably now tell me off for being too negative again. I think I'm trying to be positive. I'm positive improvements are needed, especially in the way the website conveys information, and the kinds of information it contains.
I cannot comment on the helpline. I haven't used it. I imagine the helpline team are stretched.
But the upshot is, many people seek this forum to resolve their problems. NAS is insensitive to treat this as just a chat room. Whether rightly or wrongly it has become something else altogether.
