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sidney
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26 Jan 2014, 7:43 am

Hello,

being very disappointed with both Autism Speaks and The Thinking Person's Guide to Autism, I find myself in lack of a platform where useful articles and news about ASD are shared.
I follow autism and oughtism, which is a wonderful blog, but I was wondering if there is another ASD news platform that is worth following. A platform where there is respect and understanding for both people on the spectrum and their parents and that shares useful information. Any tips?



MathGirl
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03 Feb 2014, 8:21 pm

What's wrong with The Thinking Person's Guide to Autism? Just wondering.


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sidney
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04 Feb 2014, 3:49 am

Their articles about scientific research and about self-advocacy are great, but the threads about parenting usually end in parent bashing and shaming NT parents who are not doing what the people at TPGA think they should be doing. And then there's the infanticide posts, which are appalling on many levels.
I just can't handle all the negativity, the shaming of everyone who dares to say that they find it hard to parent a kid on the spectrum, the personal attacks- with poor rhetorics - on everyone who disagrees with what they state, and this weird idea they seem to have that most parents are horrible.



Dmarcotte
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07 Feb 2014, 2:04 pm

there is a website:
Daily Autism Update - I don't have the link handy.

Also you might consider setting up a google alert and then you will get a list of every article, blog and forum that mentions the words you ask for.

For example if you set up an alert for the word autism you will get a daily email of everything published that day with the word autism - this may sound like it is a lot, but really it isn't so much and it is a great way to stay updated without depending on someone else.


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sidney
Snowy Owl
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07 Feb 2014, 2:09 pm

Oh, that google alert tip is great! Never even thought of that! It probably makes it possible to combine a couple of search words, which is even better! Going to try this.



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08 Feb 2014, 12:23 am

sidney,
here is a good google trick that will give a lot of results.

theyre called google dorks,its a type of code that makes google give very specific results.
the format is the following-

Quote:
*key words here* inurl:blogspot.com

so to use an example if woud like to copy and paste:
autism ASD inurl:blogspot.com

-have used this often to find good blogs,it doesnt have to be blogspot.com as the domain,it can be blogspot.co.uk or any other blog domain.

as for the negative attitudes on those blogs towards parents who struggle with autistic kids,its impossible for anyone to understand what its like to be a parent if they havent been one themself, they may see their autism as a gift and perfection and any parents comment about their autistic childs behavior making them unable to cope is by proxy felt as an attack on them to.

those of us with autism have very different views of our autism and in most cases see it as neither bad nor good;just a part of life because we have never been any different, that includes those of us who are severely or profoundly autistic,though we are continuously spoken for by parents and believed to be suffering and in need of curing because they are the people who live with us-its all about different view points,its very difficult for both sides to see each others view as it requires first hand insight;whether that be being a parent or having autism.

the problem arrises when some parents focus on the child overall themselves as being the problem and not the challenging behaviors or difficulties.

some of us have been treated as resented non functional burdens by our family and society our whole lives,for some autistics who had no diagnosis when growing up they have not had good relationships with their family because of their parents treatment and view of them.
we all need to have an open mind if we want to learn to understand why parents [or autistics] may think the way they think.


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sidney
Snowy Owl
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08 Feb 2014, 4:34 am

Thanks, KingdomOfRats, that's a great trick indeed, thanks!

Also, thank you for your insight on the parenting issue. I understand. Ever since my son's Dx I now see the ablism everywhere, the disregard of anyone being different, the not understanding how some things are just profoundly different and the bullying - even by adults; the way some people talk about kids (usually not their own) that are a bit different sometimes makes me want to punch them in the face.
And I can't even begin to understand how it must have been for some kids without Dx, without understanding, being considered to be a 'bad child', being abused in the name of 'discipline'.
So I understand that some people might be a bit defensive and do not want to hear parents 'complain' about raising a kid with autism.

However, I also see the other side of it, as you wrote.
I'm not even going to mention the waiting lists, all the battles I have to fight to get any kind of support, etc. The hardest part about raising a special kid, is the lack of understanding from the outside world.
I lost the majority of my so-called friends. There is still no-one in my surroundings who understands my kid or who understands my worries. Everyone has an opinion, though.
Finding a good school for him is impossible, so I spent many hours trying to get his teachers to understand him and his needs. The parents at his school think I'm a nut.
Talking with other parents about kids, is always awkward, because when I try to join the conversation, I get a lot of 'yeah, humm... but it's different with him, I guess', or just the staring-at-their-shoes.
It breaks my heart when kiddo doesn't get invited to yet another birthday party. And when I express my grief, guess how much understanding I get? (in Bill Clinton's voice:) Zero. Because I 'have to understand'. I think you'll understand why I get meltdowns too. :)

That's why I cringe when people on TPGA e.g. point angry fingers at struggling parents. I just think it's dangerous, because these parents are alienated, misunderstood, and often unsupported.
I would never hurt my kid, but I do feel desperate sometimes. Desperate, and alone. If TGPA really wants to help people, they need to understand that most parents are standing outside in the rain with their kids, uninvited to the neurotypical party going on inside the house.

I checked your blog. It looks very interesting, I'll read some of your stuff later.
Thanks for the input, and thanks for listening too :).



cyberdad
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08 Feb 2014, 6:19 pm

KingdomOfRats wrote:
sidney,
here is a good google trick that will give a lot of results.

theyre called google dorks,its a type of code that makes google give very specific results.
the format is the following-
Quote:
*key words here* inurl:blogspot.com

so to use an example if woud like to copy and paste:
autism ASD inurl:blogspot.com

-have used this often to find good blogs,it doesnt have to be blogspot.com as the domain,it can be blogspot.co.uk or any other blog domain.

as for the negative attitudes on those blogs towards parents who struggle with autistic kids,its impossible for anyone to understand what its like to be a parent if they havent been one themself, they may see their autism as a gift and perfection and any parents comment about their autistic childs behavior making them unable to cope is by proxy felt as an attack on them to.

those of us with autism have very different views of our autism and in most cases see it as neither bad nor good;just a part of life because we have never been any different, that includes those of us who are severely or profoundly autistic,though we are continuously spoken for by parents and believed to be suffering and in need of curing because they are the people who live with us-its all about different view points,its very difficult for both sides to see each others view as it requires first hand insight;whether that be being a parent or having autism.

the problem arrises when some parents focus on the child overall themselves as being the problem and not the challenging behaviors or difficulties.

some of us have been treated as resented non functional burdens by our family and society our whole lives,for some autistics who had no diagnosis when growing up they have not had good relationships with their family because of their parents treatment and view of them.
we all need to have an open mind if we want to learn to understand why parents [or autistics] may think the way they think.


Thanks KOR...



MathGirl
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10 Feb 2014, 10:40 am

sidney wrote:
Their articles about scientific research and about self-advocacy are great, but the threads about parenting usually end in parent bashing and shaming NT parents who are not doing what the people at TPGA think they should be doing. And then there's the infanticide posts, which are appalling on many levels.
I just can't handle all the negativity, the shaming of everyone who dares to say that they find it hard to parent a kid on the spectrum, the personal attacks- with poor rhetorics - on everyone who disagrees with what they state, and this weird idea they seem to have that most parents are horrible.
Okay, interesting. I never got that vibe off them (I don't really read the blog, though, but I have read their book). For a blog which gets major input from parents, this is strange.


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sidney
Snowy Owl
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10 Feb 2014, 11:05 am

Their book is probably very informative. And the vibe used to be different, people say. It's a pity.



Ettina
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10 Feb 2014, 5:04 pm

You could also try the news subforum on this website. :)