tag:blogger.com,1999:blog-8188078120365131355.post5067906628005678267..comments2024-01-16T04:04:41.045-05:00Comments on Someday I'll Sleep Autism Blogs: 7 Quick Takes Friday: Autism EditionCammie Dianehttp://www.blogger.com/profile/07137080807945525006noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-8188078120365131355.post-24459384901867673412014-03-30T22:47:20.966-04:002014-03-30T22:47:20.966-04:00I haven't known about it for very long either ...I haven't known about it for very long either and I was really shocked too! They're such a well known name that I think that kind of makes parents instinctively trust them... so when I started reading autism blogs and finding out how upset people are about they're statements and the way they're run, I was shocked. The link up above for Diary of a Mom (actually here, let me post it again: http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/ <br /> ) was one thing that really got me thinking, because the blogger supported AS for a long time before she finally changed course...Cammie Dianehttps://www.blogger.com/profile/07137080807945525006noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-14465583722979473712014-03-30T19:24:29.432-04:002014-03-30T19:24:29.432-04:00Hi Hafsa,
Thank you for sharing some of your expe...Hi Hafsa,<br /><br />Thank you for sharing some of your experience here. <br /><br />I think my problem with Autism Speaks extends beyond their view of autism into the fact that only 4 cents of every dollar that they bring in actually goes to help autistic people get services. And none of their funding goes to technology that provides more effective alternative communication devices, which as I'm sure you know is what tends to help autistic individuals the most during their lifetime.<br /><br />Another major concern is the language that they use. It's really dehumanizing. I would never, ever want my child reading their site and believing that she's a burden that's destroying her family and the people around her, and that is literally what they're public service announcements have said. <br /><br />I do think there's so, so much more that should be done to help families and individuals with autism. I just can't agree with their model or how they want to fix it, which basically amounts to eugenics. <br /><br />I guess basically I see so much that I wish could be done, I just don't see AS heading in the right direction to do it and offer actual help to families or individuals, likely because they don't really interact or involve those individuals because their views on them...<br /><br />Prayers for you guys! Regressive autism would be so hard... in some ways it's a blessing that Mae never developed beyond about 16-17 months, because the realization that something was different came on very slowly over the course of a year... and I think it made it easier to deal with when the time came.<br /><br />And I can totally, totally understand with the regression wishing that you could take it away so that she was like she was before. <br /><br />I guess what I should really say is I wish I could ease the burden without making everyone neurotypical if that makes sense... I hope it does!Cammie Dianehttps://www.blogger.com/profile/07137080807945525006noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-14406377039865966802014-03-30T09:14:16.054-04:002014-03-30T09:14:16.054-04:00Virtually everything you've said about autism ...Virtually everything you've said about autism rings true for folks in the bipolarity range/class of disorders as well! Everyone's experience of their condition is different, most advocacy groups don't have a clue what they're talking about, the disease IS your personality, the causes are varied and poorly understood, laymen don't know what they're talking about,and, most importantly, we lost track of our doctors in a hurry!<br /><br />If I had a nickle for every time I've been told by a person "you'll grow out of it" or "It's just a vitamin D deficiency" I could probably better afford my medication.<br /><br />Related to autism directly, the people who are saying that it's linked to vaccinations (a) have no concept of causality and (b) are advocating dangerous, dangerous behaviour.<br /><br />Bless you and your family, Cam. Zachary J. Adamhttps://www.blogger.com/profile/08923712479703550171noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-65191757457099924912014-03-29T11:59:41.815-04:002014-03-29T11:59:41.815-04:00It is so clear the the experience of having a chil...It is so clear the the experience of having a child on the spectrum is so individual and unique to each family. The only child I know personally who has been diagnosed is a 9 year old boy who is totally non-verbal, becomes extremely upset and lashes out with any change in routine, and seems to "connect" only with his grandfather. His parents also had to fight to get him into one of the few programs available locally. It is so sad how the number and quality of programs differs radically from place to place. <br /><br />Mariedixieaglehttps://www.blogger.com/profile/12923834034976250382noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-74356311974526000662014-03-29T10:11:06.878-04:002014-03-29T10:11:06.878-04:00Cam, I thought the article in the Wall Street Jour...Cam, I thought the article in the Wall Street Journal this week was interesting. It noted that some companies are starting to focus on hiring autistic individuals, because the intense focus many exhibit is important in problem-solving tasks or particularly detailed tasks (like identifying minor errors in products -- think of the current GM recall problems -- or minor faults in computer programs).<br /><br />This Wednesday I am going to a play at Oakland University titled "Falling" by Deanna Jent. I'm told it's played around the country, and is about a family raising an autistic child. I'd like to see how that is being portrayed to the masses.Do Not Be Anxioushttps://www.blogger.com/profile/04607616214486933423noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-28179639807862947522014-03-28T23:05:11.606-04:002014-03-28T23:05:11.606-04:00I'm glad my response made some sense then, bec...I'm glad my response made some sense then, because I was really worrying it was going to be all over the place and wouldn't! When I first started looking for resources though, veteran moms that I knew with kids on the spectrum pointed me in that direction and it really does help things fall into place (at least it has for me!). <br /><br />I do wish I could take away the related health problems (like GI issues, seizures and all those things that often go hand in hand with it). And I wish I could make it a perfect world for her to grow up in... which is one of the things that interests me so much about spreading awareness and talking about our reality and experience with autism. <br /><br />And don't worry about every offending me with your questions or the language in a comment! I was actually reading a discussion about this earlier in the week and a group of parents were talking about how there's a huge difference between questions that might be posed in a way that some people would find offensive when the question is genuine, as opposed to when a person is just being hostile to people who are on the spectrum. I've seen both and there's such a huge difference! But those hard questions are the ones that others might be wondering about too and so asking them is a good thing (although I can't say that I will personally have the answers! Oh no, I think I might be rambling again!). <br /><br />Anyways, I know I could go on and on... but it's time for bed! Have a good night!Cammie Dianehttps://www.blogger.com/profile/07137080807945525006noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-83065203529923842742014-03-28T22:38:12.502-04:002014-03-28T22:38:12.502-04:00So glad you wrote this. Your number 4 was the best...So glad you wrote this. Your number 4 was the best. She came into this world wired a certain way and your task is to help he become the best Maggie she can be. And it really sounds like you are just giving her all the love and support she needs.<br /><br />And BTW, she is so so cute! Just beautiful!Anonymoushttps://www.blogger.com/profile/14918879522485140153noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-68038114151239276632014-03-28T22:38:05.269-04:002014-03-28T22:38:05.269-04:00Thank you, Cam. I AM interested, and I will look ...Thank you, Cam. I AM interested, and I will look at the links you referenced. I would like to understand what is happening to those diagnosed as autistic, and how they articulate their experience of the neurotypical world. I wonder how the world will change as so many more children are determined to be on the spectrum, and they begin to affect society as contributing members. Thank you for your long response. Unfortunately, I don't have someone who is on the spectrum nearby that I can observe and compare their behavior to what is written on blogs out there. But I look forward to learning so much more about this condition. <br />God Bless. ~ BonnieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-11908047559017580042014-03-28T21:31:04.908-04:002014-03-28T21:31:04.908-04:00I don't know. Mae's doing really well wit...I don't know. Mae's doing really well with therapy but she has also diagnosed as "severely autistic." And even when she was at that point of her diagnosis, she was still amazing. My goal in putting her in therapy is to encourage communication, both on her terms and in a way that the rest of the world can understand, basically in her language and ours. At the same time I can't imagine wanting to stamp out the part of her that is her which also happens to involve the way she thinks... which is apparently quite autistic (this might be rambling, and I'll try to get to the point!).<br /><br />A lot of autistic people, even non-verbal adults, are deeply, deeply hurt by the language that Autism Speaks uses. That's really where I started when I started learning about autism after Mae's diagnosis. I started reading facebook pages by autistic adults and reading blog posts by them, talking about their experiences (you'd be amazed by how many non-verbal autistic people, as well as verbal people on the spectrum are amazing writers). The way nearly all the people on the spectrum that I've encountered have expressed it, the problem often comes in the way that neurotypical people talk about people on the spectrum as if they're broken. They don't want to be fixed, they want to be respected... because so many of the hardships that they face come from a lack of understanding and acceptance, from the cruelty people lash out with towards those who are different.<br /><br />The thing is, you really wouldn't be able to change what neurotypical people see as the basis for the "problem" without completely destroying the way that they see and view the world. You can't just take out the "problem." Because what neurotypical people think is the problem is the way that they think.<br /><br />I'm not sure I'm expressing this well at all though. More and more I'm coming to realize that the people who give the best voice to autism awareness are those who are living it themselves everyday because they can articulate exactly why Autism Speaks is so very, very wrong.<br /><br />I'm trying to think of some of my favorite links that do help! And if you're interested they are definitely worth reading. <br /><br />This post right here is an awesome place to start: http://tomplastow.wordpress.com/2014/02/09/dear-autism-parents-we-dont-want-to-be-cured-2/<br /><br />This post is a must read too (and if you read the whole thing and read about the author's daughters encounter with the head of Autism Speaks you'll see at a very basic level how little that woman understands about people on the spectrum)http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/ <br /><br />There's also ASAN (Autistic Self Advocacy Network): http://autisticadvocacy.org/<br /><br />And The Autcast (both his blog: http://thautcast.com/drupal5/ and facebook: https://www.facebook.com/thautcast ) is another place to start.<br /><br />Anyways, those are a starting place for anyone seeking to understand why I'm not hoping for a cure for autism and why I think Autism Speaks is completely headed in the wrong direction. They're headed down a path that causes more people to be terrified of the differences of people who are on the spectrum... and really, that's the last thing kind of boost in awareness that we need...Cammie Dianehttps://www.blogger.com/profile/07137080807945525006noreply@blogger.comtag:blogger.com,1999:blog-8188078120365131355.post-43693906428490905422014-03-28T20:39:03.202-04:002014-03-28T20:39:03.202-04:00Not being familiar with autism, I really don't...Not being familiar with autism, I really don't know, then, how one speaks properly about the deficits a person with autism experiences. As I currently understand it, this condition has problems associated with it that have to do with the inability to function in society without lots of accommodation. Is that the right way to describe the condition and the problems it presents? Because then, a "cure", to me, would suggest something can be done to correct brain function to improve functionality in the outside world. It would change the child, but only in that they would be able to acquire a skill they cannot currently acquire.<br />It also seems to me that Autism Speaks may be portraying what it is like for those who deal with children who are on the lower end of functionality on the spectrum. From what you say of her, Mae doesn't fit that description, and there is much hope for her. So of course AS's take on autism may seem dark and harsh. But I expect it is reality for many people. It just doesn't speak for everyone on the spectrum.<br />Of course, I would hope all parents love their children and hope for them to have the best possible life and achieve their highest potential, even their children with serious impairments.<br />Could you help us to understand the best way to talk about autism that respects the person but at the same time accurately describes the problem and hopes for improvement?<br />God Bless. ~ BonnieAnonymousnoreply@blogger.com