Aspies For Freedom
Article about how autism awareness is still failing. - Printable Version

+- Aspies For Freedom (http://www.aspiesforfreedom.com)
+-- Forum: General (/forumdisplay.php?fid=48)
+--- Forum: News and media (/forumdisplay.php?fid=2)
+---- Forum: AFF News (/forumdisplay.php?fid=62)
+---- Thread: Article about how autism awareness is still failing. (/showthread.php?tid=21701)


Article about how autism awareness is still failing. - Alison - 02-19-2011 01:50 PM

The link to this, and the comments that follow are here:

http://www.care2.com/causes/health-policy/blog/another-mother-kills-her-autistic-child-is-autism-awareness-really-enough/#comment-1691282

I've commented on this site, gave a serve to Autism Speaks and pimped our own AFF site to those who want a truer representation of what Autism is.  

And here's the actual article, sans comments:

The news about autism this summer has been difficult.

A Bronx mother killed her 12-year-old autistic son Wednesday night before taking her own life, the July 29th New York Daily News reports. Last week, a mother in Dallas killed her two young autistic children. Another New York city mother and a mother in Wales killed their autistic sons earlier this year. A Colorado mother killed her baby because she thought he might be autistic. A Chinese mother who admitted to killing her autistic daughter in Canada walked free from prison. And many in the autism community will remember the case of Dr. Karen McCarron, an Indiana woman who killed her young autistic daughter, Katherine, and was sentenced to 36 years in prison in 2008.

Hard Questions

Are there really more parents---mothers---killing their autistic children?

Is it rather that, due to the explosion of interest in autism in the past decade, the media is reporting more about such crimes?

I don't know. I'm not sure that we can know.

The Rise of Autism Awareness in the Past Decade
All the interest in autism in the past couple of years has been fueled by the efforts to raise awareness about autism, by organizations like the Autism Society of America and Autism Speaks. There have been many, many more books, blogs, movies, charity fundraising events, more everything, all with the general belief that, by increasing the amount of information available to the public, people will understand more about autism and things will be better. Things will be better from better services, more understanding in the community, school programs.

But is all this autism awareness really helping autistic individuals and their families and caretakers? Or is it just promoting a rather sensationalistic and tragic view of what life with autism is?

For myself, I'm sticking with the example of the late Clara Claiborne Park, for whom the 'last word' was 'still love'----love and, for my husband Jim and me, a hectic, difficult, and richly meaningful, and good, life with our son Charlie.


RE: Article about how autism awareness is still failing. - MOSBORN - 02-19-2011 03:29 PM

If only "Autism Awareness" were the same as "Learning about Autism."  "Autism Awareness" seems to be increasing the number of times the word "autism" appears on bumper stickers, but doesn't seem to be increasing the number of people who have an idea of what it is all about.  Sometimes it seems to be doing the opposite; that is, it seems like there are more and more people who believe they are "aware" of autism, but in fact have misinformation and distorted views of what autism is.  I see a lot of parents of autistic kids joining a different site that is supposed to be supportive, but most of them talk about being "devastated."  

What if "Autism Awareness" campaigns focused more on messages like "Hey!  Some of us see things a lot differently than you do, OK?!"   ...instead of "Oh, those poor, wretched freaks..." ?


RE: Article about how autism awareness is still failing. - 190 - 02-19-2011 07:50 PM

The AS rights movement is useful in the sense of promoting tolerance of autistics / AS people, but it isn't perfect.

People will compare the message that they get from the autistic rights movement to what they see on the ground. You can talk about how smart some autistics like Temple Grandin are, but if the autistics that people see are like just plain weird and keep on offending people (inadvertently), then people aren't gonna believe the autistic rights movement.  

There are some other effects:

Firstly, it encourages a victim mentality in many AS people -  some of them seem to think they are the only victims and that others don't have problems.

Secondly, it encourages a crutch mentality - i.e. oh we've got AS, and so you change and tolerate us on our terms and not we change to adapt to our environment. Hardly anywhere do I see anyone encouraging or giving guidance to Aspies to adapt to their environment, which is why I am here.

Thirdly (and the one I seem to hate most) is that the AS community seems to equate giftedness with AS. How not true indeed.

After all, it is difficult and time consuming for people to understand with and connect with autism. Don't expect people to bother to find out about by themselves.


RE: Article about how autism awareness is still failing. - d_olson27 - 02-19-2011 07:56 PM

190, you could say the same things about any minority rights movement. At first, it never seems like the majority is going to put in the time and energy to understand and connect with the minority in question. What usually ends up happening is the minority does most of the leg-work, and the majority ends up gradually seeing them as equal and valid human beings.


RE: Article about how autism awareness is still failing. - violet_yoshi - 02-20-2011 12:39 AM

I added my support to the cause.


RE: Article about how autism awareness is still failing. - Alison - 02-20-2011 01:58 AM

190 Wrote:
Thirdly (and the one I seem to hate most) is that the AS community seems to equate giftedness with AS. How not true indeed.


I just have to jump in here: not true?  Maybe not of all, but definitely true of a lot of us!  My splinter savantism is hyperlexia: facility with the written word.  People with Aspergers (not all, but a statistically high number) have been shown to have above-average IQs.  And our focus and ability to get every little detail from whatever we're interested in is legendary!

Why do you hate the idea that there are indeed some of us within the AS community who are gifted?  I would have thought that was a good thing.

Alison


RE: Article about how autism awareness is still failing. - AspieMomma - 02-20-2011 02:23 AM

d_olson27 Wrote:
190, you could say the same things about any minority rights movement. At first, it never seems like the majority is going to put in the time and energy to understand and connect with the minority in question. What usually ends up happening is the minority does most of the leg-work, and the majority ends up gradually seeing them as equal and valid human beings.


Just look at deaf culture! Can you imagine someone saying, "deaf and dumb" now?  Deaf people used to be considered retarded and were put in institutions (they still are in some countries).  

One day the term "idiot savant" will cause people to gasp the way that "deaf and dumb" does.  We'll get there, it just takes time.  

There are quite a few parallels between Temple Grandin's life story and Helen Keller's, now that I think about it.  They both came from well off families, both kids were written off as hopeless cases, both families hired outside help and never gave up on them, both women grew up to become well respected and well educated activists.


RE: Article about how autism awareness is still failing. - Marcia - 02-20-2011 02:50 AM

AspieMomma Wrote:

d_olson27 Wrote:
190, you could say the same things about any minority rights movement. At first, it never seems like the majority is going to put in the time and energy to understand and connect with the minority in question. What usually ends up happening is the minority does most of the leg-work, and the majority ends up gradually seeing them as equal and valid human beings.


Just look at deaf culture! Can you imagine someone saying, "deaf and dumb" now?  Deaf people used to be considered retarded and were put in institutions (they still are in some countries).  

One day the term "idiot savant" will cause people to gasp the way that "deaf and dumb" does.  We'll get there, it just takes time.  

There are quite a few parallels between Temple Grandin's life story and Helen Keller's, now that I think about it.  They both came from well off families, both kids were written off as hopeless cases, both families hired outside help and never gave up on them, both women grew up to become well respected and well educated activists.


Are you interpreting "dumb" in the emboldened phrase to mean mentally retarded?  I'm not sure if that's your intention here.  In the context of "deaf and dumb" it means someone who is deaf and is also without speech.


RE: Article about how autism awareness is still failing. - Genesis - 02-20-2011 02:51 AM

I think she is trying to say from back then interpretation.


RE: Article about how autism awareness is still failing. - Marcia - 02-20-2011 02:55 AM

Genesis Wrote:
I think she is trying to say from back then interpretation.


It's just that the use of "dumb" meaning "stupid" or "mentally retarded" is American English, although it does now have that meaning here as well, but more as a slang term, and not in the context of "deaf and dumb" which people would still take to mean someone who cannot speak.  In years past, deaf people were not allowed to use sign language because it marked them out as not "normal" and so great effort was expended in teaching them how to speak and to lip-read instead.  The Deaf community fought to use sign language instead of being forced to learn to speak.


RE: Article about how autism awareness is still failing. - Genesis - 02-20-2011 02:57 AM

Wow.... was this in and around Glasgow?


RE: Article about how autism awareness is still failing. - Marcia - 02-20-2011 03:03 AM

Genesis Wrote:
Wow.... was this in and around Glasgow?


I think in the UK as a whole, but yes, definately in Glasgow.  My mother was a school dentist and she worked for a while in the School for the Deaf and at that time, mid 60's, sign language was actively discouraged at best or prohibited at worst, in favour of lip-reading and learning to speak without the help of signing.  The thinking behind it was that they would be more like hearing people if they could acquire those skills, whereas if they relied on sign language then they would be excluded from the hearing community.

I don't know for how long that thinking persisted, and certainly for many years now, sign language has been the norm.


RE: Article about how autism awareness is still failing. - Genesis - 02-20-2011 03:05 AM

wow


RE: Article about how autism awareness is still failing. - Marcia - 02-20-2011 03:13 AM

I don't think those who came up with this policy set out to be cruel or harsh.  They were well-intentioned, but misguided, and things did change.  What is the saying?  "The past is a different country" - even the recent past.


RE: Article about how autism awareness is still failing. - Genesis - 02-20-2011 03:15 AM

Hopefully there is good intentions for this Wired article to give people a clear light: http://www.wired.com/medtech/health/magazine/16-03/ff_autism?currentPage=all


RE: Article about how autism awareness is still failing. - 142857 - 02-20-2011 04:59 AM

190 Wrote:
Thirdly (and the one I seem to hate most) is that the AS community seems to equate giftedness with AS. How not true indeed.


To echo Alison, a significant proportion of us are gifted in some ways.

http://www.aspiesforfreedom.com/showthread.php?tid=21322

The fact that some of the most gifted and significant people in human history have likely been autistic may be doing a disservice to those who are not particularly gifted and are looking for acceptance/integration. BUT it is a valid tool in the fight we will face to prevent the elimination of autism in utero.


RE: Article about how autism awareness is still failing. - d_olson27 - 02-20-2011 05:06 AM

Genesis Wrote:
Wow.... was this in and around Glasgow?


I think that happened in the States, too. I heard all about it when I took an ASL (American Sign Language) class one summer. Children's hands would sometimes be tied down to keep them from signing. It horrified me when I first learned about it.


RE: Article about how autism awareness is still failing. - Genesis - 02-20-2011 05:10 AM

d_olson27 Wrote:

Genesis Wrote:
Wow.... was this in and around Glasgow?


I think that happened in the States, too. I heard all about it when I took an ASL (American Sign Language) class one summer. Children's hands would sometimes be tied down to keep them from signing. It horrified me when I first learned about it.


How stupid could people be.


RE: Article about how autism awareness is still failing. - Marcia - 02-20-2011 05:56 AM

142857 Wrote:

190 Wrote:
Thirdly (and the one I seem to hate most) is that the AS community seems to equate giftedness with AS. How not true indeed.


To echo Alison, a significant proportion of us are gifted in some ways.

http://www.aspiesforfreedom.com/showthread.php?tid=21322

The fact that some of the most gifted and significant people in human history have likely been autistic may be doing a disservice to those who are not particularly gifted and are looking for acceptance/integration. BUT it is a valid tool in the fight we will face to prevent the elimination of autism in utero.


Some people have a tendency to claim people who were particularly gifted or academic as being AS.  Perhaps that is what s/he is meaning, rather than denying that people on the Spectrum can be gifted.

As an aside, in Scotland the official terminology in education policy documents and legislation isn't "gifted", but "very able".  The reasoning behind this is that all people have gifts of some kind.

Children who are very able are included in the Additional Support for Learning legislation, which replaced the Special Education legislation.


RE: Article about how autism awareness is still failing. - 190 - 02-20-2011 07:47 PM

d_olson27 Wrote:


d_olson27 Wrote:
190, you could say the same things about any minority rights movement. At first, it never seems like the majority is going to put in the time and energy to understand and connect with the minority in question. What usually ends up happening is the minority does most of the leg-work, and the majority ends up gradually seeing them as equal and valid human beings.


Well, I agree. Anyway, its supposed to be a 2 way game - both sides move a bit. Well, being the minority, we stand to gain the most from this and well, its worth the leg work.

Timing wise, if Aspies had organised in the 60s around the same time as the LGBTs then well it might have been successful, but now people are getting sick of having to tolerate all manner of fringe groups - especially when some abuse it and do all manner of stupid things.

Well, in any case, the reality bites. We can demand equality and be accepted on our terms - ie right to be different, etc etc but well nobody gives a crap. I choose to accept the reality and try to blend in.

Alison Wrote:

190 Wrote:
Thirdly (and the one I seem to hate most) is that the AS community seems to equate giftedness with AS. How not true indeed.


I just have to jump in here: not true?  Maybe not of all, but definitely true of a lot of us!  My splinter savantism is hyperlexia: facility with the written word.  People with Aspergers (not all, but a statistically high number) have been shown to have above-average IQs.  And our focus and ability to get every little detail from whatever we're interested in is legendary!

Why do you hate the idea that there are indeed some of us within the AS community who are gifted?  I would have thought that was a good thing.

Alison


Ok, maybe my point was vague. Of course having gifted people in the AS spectrum is a good thing; what I particularly hate is the Aspie rights movement claiming that giftedness is somehow associated with or is a function of AS, when there are more than enough exceptions around.

Whether or not I fall into the category of Splinter savants is irrelevant; but from an outside perspective it makes us seem somewhat "arrogant" (whatever word you can use for this; my english vocab isn't good)


RE: Article about how autism awareness is still failing. - d_olson27 - 02-21-2011 08:55 AM

190 Wrote:

d_olson27 Wrote:


d_olson27 Wrote:
190, you could say the same things about any minority rights movement. At first, it never seems like the majority is going to put in the time and energy to understand and connect with the minority in question. What usually ends up happening is the minority does most of the leg-work, and the majority ends up gradually seeing them as equal and valid human beings.


Well, I agree. Anyway, its supposed to be a 2 way game - both sides move a bit. Well, being the minority, we stand to gain the most from this and well, its worth the leg work.

Timing wise, if Aspies had organised in the 60s around the same time as the LGBTs then well it might have been successful, but now people are getting sick of having to tolerate all manner of fringe groups - especially when some abuse it and do all manner of stupid things.

Well, in any case, the reality bites. We can demand equality and be accepted on our terms - ie right to be different, etc etc but well nobody gives a crap. I choose to accept the reality and try to blend in.


I would advise you to look at the history of the LGBT rights movement, particularly during the '60s. For that matter, you might want to look at the histories of black rights, women's rights, native american rights, and other branches of disability rights. None of them exactly started with the majority saying "Oh, you want to be treated like people? That's fine. How do you want us to change?"


RE: Article about how autism awareness is still failing. - Genesis - 02-21-2011 08:59 AM

What about the Iron Jaw Maidens? The Women's rights activists in 1920s in America?


RE: Article about how autism awareness is still failing. - Tank123 - 04-11-2011 05:17 AM

So this is what is has led to...this is sick...this is pathetic.  Parents who are seperating themselves and even killing their own children.  This is what this campaign has led to.  I still just remain so shocked as how people could, are capable of, and are permitted to attempt to deny a human being's right to exist.  I am so disgusted by this that I am at a loss of words for this topic.