4/27/2011

Autism Now: Ignoring People With Autism

ROBERT MACNEIL: Well, perhaps he's right.
We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.
But they speak for themselves. And we didn't see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.

As the mother of an adult on the spectrum who is not "high functioning" in the way that MacNeil is speaking of, I find the lack of concern for adults on the spectrum and the peculiar belief that "a lot of adults...are high-functioning," speak for themselves and therefore don't need to be seen on his series offensive.

First, we don't actually have any good numbers for how many adults on the spectrum there are nor do we know what their functional levels are. We do know there are not enough services and programs for them, though. We don't even know how many autistic adults continue to rely on their families for their care because there are not adequate living situations that would allow them to live on their own in assisted living situations where necessary. We don't know how many are employed (although what research there is shows most are NOT employed).

Second, if MacNeil believes that adults on the spectrum are doing just fine and speaking for themselves, then what's his worry; all these kids with autism must have nothing to worry about; they'll be fine, too, right? Come on; this ignores the reality that the need for support continues throughout the lifespan, even for those who are doing relatively well (even if that support may, for some, only be social support and an empathetic community).

Third, in a series giving an overview of autism, autistic voices should be heard; their interior reality ought to have as much weight (if not more) than family members' realities. Many autistic individuals are capable of communicating their self-evaluative realities, even if it's done in a different fashion, and they absolutely deserved the right to have that opportunity.

In the episode dealing with education, MacNeil, rather than having a disparaging narrative overriding his sitting there on the boy's bed watching him talk animatedly about his collection, could have asked him about what it was like for him to be autistic, what autism meant to him, what his hopes for the future were, what his concerns were.

An entire segment could have been devoted to interviewing a range of autistic individuals across different ages and severity levels. MacNeil could have asked them what they wanted the world to know about what their lives were like with autism. He could have included people who desperately want a cure to those who have found their way and their place. He could have included people with severe co-morbid issues and need 24/7 assistance to those who live independently. He could have interviewed young children like his grandson, who is verbal, to older adults, who've had decades to live with autism and how its reception in the world has changed.

He could have done something very powerful with his journalistic experience. He could have been the conduit to something amazing, to something that ran the gamut of the autism spectrum and really gave the world a window in to the autistic experience, all of it.

52 comments:

MJ said...

You are offended that PBS choose to give a voice to those are typically unable to speak for themselves? That they choose to focus the resources that were available on children whose issues are typically ignored?

The self-advocates have already had many chances to talk for their needs. But more than that they have the ability to talk for themselves which they can and do use on a daily basis. I think they can afford to let one chance for "awareness" pass them over and let a show spend some time looking at the rest of the spectrum for once.

After all, autism isn't just about "awareness" of what high-functioning adults think. There are many other people on the spectrum and it is long past time that someone took the time to look at their needs.

KWombles said...

No, I'm offended that they presented parents' positions only and did not look at the full range of the spectrum and include interviews with autistic individuals (not self-advocates). That it ignored people like my son who HAVE aged out of the system and for whom there are inadequate resources.

Do you even read posts with an interest of gleaning what's really being written or do you only come over when you have an ax to grind?

KWombles said...

They didn't give a voice to those who are normally voiceless. I haven't noticed any parents having a hard time getting heard.

kathleen said...

Insightful post. Yes, MacNeil could have done that. Just like MJ could have read this post. But neither did.

Heather K said...

"The self-advocates have already had many chances to talk for their needs."

LOL wut? When? Adult autistics are both underserved and underrepresented. Their requests for accomodations are often ignored or viewed as burdensome or otherwise unnecessary. Example: http://jemimaaslana.tumblr.com/post/4954739949/empathy

The notion that high-functioning autistics are somehow controlling the debate makes me laugh. HFAs are all but invisible to the media unless they happen to be Temple Grandin.

Amy Caraballo said...

There are countless adults who may not be considered vocal that should have been given a voice. At times when Movies like Wretches and Jabberers is out and Temple Grandin movies wins Oscars, it's pretty sad that PBS allowed such one-sided and questionable journalism to prevail.

Of course, most of us know that the mission of the series what to promote more fear and loathing. Not actual understanding or acceptance.

Can't help but wonder how McNeil would handle a racial issue. Hmmmm?

MJ said...

No, no axe to grind this time, sorry. And yes, like always, I do read what I comment on. But since you seem to have soo much fun saying those lines I guess I can excuse the fact that they have become an almost reflex accusation for you. Although I am a little hurt that you didn't imply that I have reading comprehension problems yet, I really love that one.

Anyway, now that we have all of the pleasantries and standard disclaimers out of the way..

I am just amazed that people are "offended" because PBS didn't interview their specific stereotype of a person with autism. Never mind that the show did have five people with autism and showed that they can function at a variety of levels. Never mind that it did a better job of showing that autism is a wide spectrum of needs.

I guess what the show was really missing was yet another look at verbal adults on the spectrum. Who cares about the other (some would say the majority of) people on the spectrum who lack the ability to give an in depth interview of how autism makes then feel.

Life in the House That Asperger Built said...

I'm just curious to know what post MJ was reading.

"An entire segment could have been devoted to interviewing a range of autistic individuals across different ages and severity levels."

That's what Kim said. It seems that MJ and Mr. MacNeil are both under the impression that the only adults with Autism are "high-functioning" with busy and "productive" lives. Um....NOT!

And I would think that someone like Mr. MacNeil would know how to do the research necessary to find that out. But this isn't really even about autistic ADULTS who are able to communicate their needs and experiences. This is about talking to the ACTUAL AUTISTIC PEOPLE!!!

I can think of two kids off the top of my head who are making headlines GLOBALLY because they are non-verbal, and were thought to be intellectually disabled, but who have found ways to let the rest of the world know that they are, in fact, deeply thoughtful, intelligent, FULLY PRESENT, individuals. At least one of them tweets and blogs, and has been featured on an ABC news special. She's 14..they couldn't have talked to her?

It would seem that for Mr.MacNeil, and perhaps for MJ as well, if an Autistic can communicate their needs an experiences on some level, that makes them "high-functioning", and therefore not worthy of a seat at the table.

My guess is that it was not the intent of the PBS program to show what Autism is like. The intent appears to have been to show how burdensome it is for care givers.

Nice.

KWombles said...

Let me amuse you now, then, MJ. If you'd actually read what I wrote, even just the last two paragraphs, you wouldn't have written the two comments you've left here.

"An entire segment could have been devoted to interviewing a range of autistic individuals across different ages and severity levels. MacNeil could have asked them what they wanted the world to know about what their lives were like with autism. He could have included people who desperately want a cure to those who have found their way and their place. He could have included people with severe co-morbid issues and need 24/7 assistance to those who live independently. He could have interviewed young children like his grandson, who is verbal, to older adults, who've had decades to live with autism and how its reception in the world has changed.

He could have done something very powerful with his journalistic experience. He could have been the conduit to something amazing, to something that ran the gamut of the autism spectrum and really gave the world a window in to the autistic experience, all of it."

Since you apparently are incapable of arguing anything other than strawmen, you can do so elsewhere.

Nightstorm said...

@MJ

I am too sick for this crap.

Let's friggin stop with the Goldilock rhetoric. I am sick to fucking DEATH of friggin NT sayings that HFAs are not as bad socially as non-verbs or "LFA". Actually, fuck the functioning labels! Fuck this nonsense of HFA or LFA.

The concept itself is dividing and does nothing and continues to cause problems. Yes I can pass as an NT am I HFA according to the psychs that did my evaluation, not really. But I can fake NT well enough for work. But passing NT means the Franklin DD is going to pass you over. Passing NT means your disability isn't visible, if your disability isn't visible people pull the Goldilocks Rhetoric like it's the end of the world. If I had a quarter for every time someone's mom says she can't tell I am on the damn spectrum I wouldn't need SSI to stay independent.

Which bring up the crux. If you are visible with your disability when your symptoms can't be managed or hidden so you can pass, you can get the services needed to survive however you probably won't be fully independent. If your disability is not visible but you need services to keep independence, they are hard to gain because people assume you are too mild for those services and you can keep independence without them. It's catch twenty two and this is why the Goldilocks Rhetoric is so DANGEROUS we have thousands and thousands of adults from all over the spectrum needing help but either they are too autistic for full independence even with gov' support or not autistic enough for those supports and they are drowning. We can't say: "This guy is HFA their for his struggles are not important as this young woman that is non-verb" we can't say: "This woman that is non-verb can't be independent at all like this young man that is HFA" We can't make assumptions based on people social appearance.

Just because an autist can pass, can lie to all that they are normal doesn't mean their struggles don't exist. That continues the dangerous trap putting many of those young people and adults in a dangerous situation. We can't put the needs of one end of the spectrum over the other.

All are important all need supports tailored to the individual.
</end_Soapbox

MJ said...

"I can think of two kids off the top of my head who are making headlines GLOBALLY because they are non-verbal, and were thought to be intellectually disabled, but who have found ways to let the rest of the world know that they are, in fact, deeply thoughtful, intelligent, FULLY PRESENT, individuals. At least one of them tweets and blogs, and has been featured on an ABC news special"

Congratulations, you just bought into one of the biggest autism stereotypes. Not every person with autism has a secret ability to communicate that just hasn't been exposed yet. I would go as far as to say that for every single person you find like there there are going to be hundreds who do not have the same ability.

And to cut off the obvious retort, just because I think they lack the means or ability to communicate doesn't mean that I think that they aren't "deeply thoughtful, intelligent, FULLY PRESENT, individuals".

"Let me amuse you now, then, MJ. If you'd actually read what I wrote, even just the last two paragraphs, you wouldn't have written the two comments you've left here."

Then amuse me, how do you "ask" an individual with severely disrupted functional communication skills something? How do you "interview" a person who lacks the communication and social skills to understand the questions?

Do you know that the term "ableism" means?

MJ said...

@Nightstorm

"I am sick to fucking DEATH of friggin NT sayings that HFAs are not as bad socially as non-verbs or "LFA"."

I did not say nor mean to imply any of that. My point was that it is long past time that some attention was paid to those who aren't HFA, not that HFA don't have serious issues that need attention too.

Nightstorm said...

MJ please enlighten the this poor autie on why assuming non-verbs are not present or aware of their surroundings is not ableist? I mean in general sense instead of treating each non-verb as individuals.

I mean I assuming you're a non-verb with severe delays so you can understand their perspective better than this verbal autie with several social and communication problems.

Life in the House That Asperger Built said...

"Congratulations, you just bought into one of the biggest autism stereotypes. Not every person with autism has a secret ability to communicate that just hasn't been exposed yet. I would go as far as to say that for every single person you find like there there are going to be hundreds who do not have the same ability."

That's the stupidest thing I've ever heard you say! So according to the above illogic, because there are "hundreds" who don't have the ability, we shouldn't talk to ANYONE on the Spectrum who can "speak" for themselves.

And for your information, you sarcastic son of a bitch..I didn't buy into any stereotype of Autistics having hidden abilities, I was making the point that there ARE "low functioning", non adults that COULD have been interviewed. Both of the girls I referenced will need services for the rest of their lives, and are unlikely to EVER live independently...maybe it doesn't matter to you what THEY think of their condition...but it should.

As to this point:

"I did not say nor mean to imply any of that. My point was that it is long past time that some attention was paid to those who aren't HFA, not that HFA don't have serious issues that need attention too."

You actually did say that..

"After all, autism isn't just about "awareness" of what high-functioning adults think. There are many other people on the spectrum and it is long past time that someone took the time to look at their needs."

Again, because in your estimation the ability to communicate one's needs = HFA...tell that to those girls..who can communicate, and still wear diapers, head bang, and need all other levels of assistance.

Nightstorm said...

I did not say nor mean to imply any of that. My point was that it is long past time that some attention was paid to those who aren't HFA, not that HFA don't have serious issues that need attention too.

Excuse me? Last time I checked, there are about three or four HFA that have some some media exposure, and even they get "Goldilock'd" by countless people. The people control the debate aren't HFA's they are parents. They are teachers. HFAs try to get a word in and immediately you have folks like MacNeil who discount their words saying that "They don't have it as bad" HELL even non-verbs with AAC try to get a word in (Amanda and Dora for example) they still get shut out and Goldilock'd by folks because they use AAC.

You're deluded to think that HFAs control the debate or they have the most exposure. When we do get exposure it's always the "Well these guys are not as bad"

MJ said...

@Nightstorm

Where exactly did I say or imply that "non-verbs" are "unaware" of their environment? As the parent of two barely-verbs I know quite well that they are "aware" of their environment. They just lack the skills to communicate their views - verbally or otherwise.

Joeymom said...

I am concerned that people labeled as "high functioning" as assumed to be functional.

I am concerned that the bulk focus on autism reporting is on families with "severely affected" children- not adults (severely affected or otherwise), not teenagers, not a variety of disability and understanding.

But I was OFFENDED at the idea that people with autism do not have empathy. Come meet my autistic child- verbal, but with communication disorder, so that people THINK they understand what he is saying, and ASSUME he can speak for himself effectively. I don't know many children more attuned to emotions around him.

I am OFFENDED at the idea that autistic people are prone to violence. Frustration and need to communicate is not a proclivity for violence.

I found the whole PBS series to be very, very sad and unfortunate- that they chose to further these ugly myths and stereotypes, instead of presenting something useful and powerful that included a wide range of the autism spectrum. After all, what those teenagers about to "come of age" face is what adults are already experiencing.

Nightstorm said...

@MJ, I misread your post, sorry.

but my other point stands. HFA do not control the debate. Not by a long shot.


I am concerned that people labeled as "high functioning" as assumed to be functional.

I am also concerned over the ideaism that Verbal=HFA. Just because a person can say "This makes me happy, this makes me sad" doesn't mean the rest of their behaviors are not limited. I can verbalize needs, I can express emotions (to some degree) it takes CONSIDERABLE effort, however I can't understand verbal instructions and I misunderstand text/verbal communication and struggle to communicate clearly every day.

but people shove me as an HFA because I can actually verbally say "Go F-yourself" (Hell lets even forget I have some echolaia issues)

MJ said...

"That's the stupidest thing I've ever heard you say!"

No, I am quite sure I have said stupider things.

"So according to the above illogic, because there are "hundreds" who don't have the ability, we shouldn't talk to ANYONE on the Spectrum who can "speak" for themselves."

No, not at all. My point was that it was good that someone FINALLY paid attention to the rest of the spectrum. Yet all that the media seems to cover is either the miracle stories of someone finding their voice, the HFA success stories, or the god-awful "we've found another gene that two people with autism have in common" ones.

"You actually did say that.."

Where exactly did I say that HFA don't have serious problems that need attention?

chavisory said...

"My point was that it is long past time that some attention was paid to those who aren't HFA..."

MJ, as I seem to understand, the ONLY attention to autism for many DECADES was to those on the relatively severe end of the spectrum.

And as I understand KWombles and Life's comments, they are NOT complaining about the relative proportion of time given to any one type, stereotype, or severity of autism, but to the near-total lack of substantive first-person perspective of autistic people themselves--of whatever ability level--in the series.

It's true that some people with severe autism can't communicate by any known means at all--that's not an excuse for excluding the voices of people who can--ESPECIALLY people with severe autism who have found some means of communication and can tell us what it's like.

chavisory said...

Oh, also, Mr. Macneil, as for the "impending arrival into adulthood of hundreds of thousands of teenagers with autism," that you deem so urgent...did you even check with them to see what it is that THEY feel is urgent?

Some will be fully independent, though not without struggling, I promise you. Some will be able to be mostly independent with sufficient support. Many will need college or vocational educations and employment, as well as services. And of course many will need more intensive life-long support. Some aren't, but many ARE capable of telling you what it is that they themselves worry about. Did you even try to find out?

Nightstorm said...

Some aren't, but many ARE capable of telling you what it is that they themselves worry about. Did you even try to find out?

Well of course not, after all those poor auties need us NT saviors and being NTs and all knowing and loving benefactors we don't need to actually communicate them because as fully able NTs, we know what they need. </Sarcasm

MJ said...

@Joeymom,

My children who have autism don't show any empathy towards us or other people. They are playful, loving little girls but don't seem to have the ability (hopefully yet) to put themselves in another's place, to have real empathy for what someone else is feeling.

Does that idea offend you?

chavisory said...

MJ--how old are they? I didn't have those abilities when I was very young. I do now. These kinds of skills can be learned, can develop, and the thing about autistic people is, we tend to keep developing skills over a much longer trajectory of our lives.

In my experience, though, not having much empathy is just as much a function of CHILDHOOD as it is of autism. Young kids don't have the life experience to put themselves in someone else's shoes. I developed empathy by knowing people, by listening to other people, by gaining life experience of my own. I.e., as a natural part of gaining maturity.

And there's always the possibility that they DO have empathy, they just can't express it well. Never assume.

Nightstorm said...


And there's always the possibility that they DO have empathy, they just can't express it well. Never assume.


Right! Empathy is a learned skill, and don't mix up empathy with compassion. A NT might have the empathy to understand the struggles of someone on the poverty line, but not the compassion to hold one's tongue and make classist remarks (like the, you shouldn't spend your food stamps on what you want but what I say you need)

Not all NTs have empathy, not all NTs can understand people outside their range of perspective.

MJ said...

I understand that empathy can be learned and is not the same thing as compassion. I also do know that my children may have empathy but are unable to express it. If fact, I hope that is the case or, failing that, that they will be able to learn the skills as they get older. They have already made amazing progress in learning to work around their limitations so I have every hope that they will be able to get past this as well.

But.

They are also long past the time, developmentally, when they should have some level of empathy and be able to show some sign of it - I am not just talking verbal communication, I am talking about ANY form of expression of the concept. The most likely explanation for this problem is the fact that they have autism.

So what I want to know is why my children's disability is offensive.

And before Kim jumps in and says that I am changing what I am saying, no, this is the main point. You have a show that talks about real problems that a large segment of the autism population has - problems that are often ignored or found "offensive" by the most vocal voices in the autism community - and people are "offended" that their view of autism didn't get aired in place of what was shown? Talk about being disenfranchised.

Sure, there are always things that could have been done differently on the show or things that could have been added to make it better. But to be "offended" because someone talked about another part of the spectrum and didn't pay the proper homage to your part of the spectrum is, well, offensive.

Nightstorm said...

So what I want to know is why my children's disability is offensive.

The Point






Your head.

Its not the disability that is offensive. It's the fact MacNeil assumes all autists have no empathy, furthermore, it's the concept of that lack of empathy continues the idea that lack of empathy is also the absence of humanity.
Ergo Autstic people lack empathy therefore they are not truly human.

MacNeil called me your daughters' Kim's kids and Joeymom's boy. Non human.

MacNeil might as well start saying that were demons or changelings. Same logic.

Life in the House That Asperger Built said...

According to PBS NewsHour on which the program aired:

"the series is designed to provide viewers with an authoritative, balanced look at the latest scientific research and medical thinking about the disorder. Equally important, it chronicles the growing impact of autism as seen through the eyes of families, children, educators and clinicians."

Authoritative and balanced... it wasn't intended to be a look solely at one end of the spectrum...it was intended to be an authoritative look at ALL of what Autism is today.. It was supposed to look at how it is seen through the "eyes of families, children..." but didn't not listen to the voices of the autistic members of those families..nor the autistic children...

Joeymom said...

MJ: it offends me that it is assumed that my son does not have empathy. Or compassion. He has both. Expressing it appropriately is a different issue.

I find most people do not understand that having empathy and expressing it are two entirely different things.

Also, Joey picks up on cues that are not what other people use for emotional and empathetic cues. We know this, because he has no trouble picking up what people are feeling around him, but has a lot of difficulty discussing the feelings of a character in a book or a person in a photograph.

Many people who are not autistic also lack empathy, that doesn't mean everyone lacks empathy. Many people, autistic or not, have no idea how to properly express empathy or compassion. That doesn't mean it isn't there and understood.

chavisory said...

MJ--No, your kids' disabilities are not offensive.

*No one is saying that.* No one here as remotely implied that.

Your continual refusal to address what Kim and Laura are actually saying is somewhat offensive.

And the PBS production's near total ignorance of what autistic people from ANY part of the spectrum had to say for themselves was offensive. I'm not offended that my little niche of the spectrum wasn't the one profiled. I'm offended that there was apparently no effort made to hear what autistic people actually thought about life, about their condition, about their hopes and fears, at all.

MJ said...

"Equally important, it chronicles the growing impact of autism as seen through the eyes of" -

"families"

Did that

"children"

Did that

"educators"

Did that

" and clinicians."

Did that

"it wasn't intended to be a look solely at one end of the spectrum"

Didn't do that - it covered five different people with five different functioning levels. In roughly hour while covering a lot of other material as well.

"it was intended to be an authoritative look at ALL of what Autism is today"

You would need several hours to cover "ALL" of what autism is today. Also, I don't recall the show saying that it was going to cover every possible group on the autism spectrum.

Although, it you want to take that approach, where it the outrage and offense that the people who are severely impaired by their autism weren't covered at all? How much time was dedicated to those who are the "lowest" functioning? Why wasn't the high co-morbidity of ID and autism covered at all?

KWombles said...

MJ,

You're once again arguing strawmen. MacNeil's refusal to speak to autistic people and his focus on how autism impacted family members and society only and not the autistic members themselves is OFFENSIVE. His failure to look at ALL of the spectrum, from the most severe (not portrayed in the series) to the less disabled, is problematic as is the fact that he didn't talk, other than once) to the autistic individuals themselves.

His inability to consider that how he framed the series might be hurtful to autistics themselves by focusing almost entirely on how they impacted their families negatively was LESS THAN EMPATHETIC. It was hurtful and inconsiderate and did autistics a serious disservice.


I've spent the last month and a half wading through the wandering issue and through the restraint and abuse issues, as well as issues like facilitated communication, where our most vulnerable in the community are having their communication co-opted by well-meaning (and not so well-meaning) helpers. You ignore any and all posts that I write that appear to not match your preconceived beliefs about my ideological stance.

My overriding concern is for the most vulnerable in our population, that their perspectives are considered, that their reality is honored, and that they are protected from abuse and mistreatment.

And yet, fundamentally, you have a tendency to ONLY come over here and comment on posts where you appear to feel you can rant against my supposed "neurodiversity" perspective.

You misrepresented this piece and my position in your first two comments here, and I am more than tired of being misrepresented. I don't mind disagreements and I respect people who can acknowledge accurately what I wrote and then argue that I am incorrect and why. You don't do that with my work.

MacNeil narrowly focused on what he was interested in and he catered to his bias while appealing to his authority as a journalist.

He had a chance to do really good work here, to present a diverse picture of autism and the reality of what autism is not just to family members, but to the autistic individuals who live it from the inside out.

This is not about neurodiversity for me. It's about fundamental respect for the human beings living with the disability.

MJ said...

@Joeymom,

I would agree with with you just said. Just because someone has autism does not mean that don't have empathy or compassion.

But that isn't what you wrote. You wrote -

"But I was OFFENDED at the idea that people with autism do not have empathy"

Now, maybe you meant to say something different or maybe I misunderstood, but the way that I read what you wrote you were waying that idea the that autism can cause a lack of empathy was offensive.

Caitlin Wray said...

The futile dialogue with MJ is indicative of why mass media represenations, like the one MacNeil has done, serve only to create deeper divisions in the autism community. This series, while I'm sure it represented the feelings of many parents and certain autism agencies, was misleading, one-sided, and derogatory. Ironically, it effectively regresses the work we should ALL be doing together, which is advancing services and supports - and understanding - for our kids as they grow into and through adulthood.

Yes, my child is high-functioning. And yes, he is still entitled to claim the label of Autism as his own, as much as any other child on that spectrum. I am so happy to read this post by Kim, because our children are at very different places on the spectrum and yet, we share goals and perspectives, and we choose to put our energies into positive advocacy.

Regardless of where your child is on the autism spectrum, they deserved a more respectful representation than what MacNeil has done here. The language in this series was abhorrent for ALL people with autism - a burden to the education system?? My child is no burden. He's a human being. And his differences - along with those that Kim's child has, and all kids with autism have - serve to enrich this world and the people they meet on their journey.

This series gave respect and integrity and honour to parents and professionals working with autism. Unfortunately it forgot entirely about its own subject - people WITH autism.

Caitlin Wray
www.welcome-to-normal.com

KWombles said...

He showed children but he did not speak to the children and talk to them about their autism and how it impacted them. His narrative was dismissive of them and was framed from how difficult it was for him to either interact with his grandson or sit there and listen to the young man in the 4th episode.

Even my son, even when he was much younger and barely verbal, could offer some substantive information about his experiences. No, it might not have been articulate or always used words, and truthfully, it was still be hampered today with his difficulties with expressive language, but he could try. The conversation could be had, the attempt made.

His reality matters, and by dismissing the needs of those who've aged out of the system as unimportant, he did my son and young autistic adults a tremendous disservice.

And you'll never see my son online communicating; although he can read, he doesn't know when he's missed words, so he doesn't know when he's garbled the communication. Spelling and writing are extremely difficult and so writing out his communications aren't possible without speech to text capability. He's not a self-advocate and his reality wasn't portrayed. The closest it got was the young man that MacNeil asked a few questions to; the focus wasn't on that young man's reality; it was on his family and the hardships he caused his family.

You think I'd let my son anywhere near a series that feels his reality and his feelings about how his disability is portrayed are so unimportant that they don't even merit consideration? You think that's okay?

My son's autism and my daughters' autism are NOT about me and how it affects me. The focus should be on how it impacts them and how to best help them succeed in a world that finds their internal emotional state so unimportant that for a documentary on autism, autistic individuals weren't even consulted.

But even with this personal note, this isn't about MacNeil providing coverage of my children's particular slice of the autism spectrum. And if you honestly can't see the points I've tried to make, then there's absolutely no point in continuing the discussion with you.

KWombles said...

Caitlin,

Beautifully said! Thank you.

chavisory said...

"Now, maybe you meant to say something different or maybe I misunderstood, but the way that I read what you wrote you were waying that idea the that autism can cause a lack of empathy was offensive."

Autism can cause impairments in the development, operation and expression of empathy. I don't usually yell online, but

THAT DOES NOT MEAN THAT WE DO NOT HAVE IT.

And yes, the dogma that we don't have it, and are therefore impaired in our basic humanity, is offensive.

MJ said...

"THAT DOES NOT MEAN THAT WE DO NOT HAVE IT."

Where exactly did I say that? As a matter of fact, I think I said the exact opposite not once but a few times.

chavisory said...

I give up. I don't know what else to say, except that, MJ, you're showing a distinct lack of empathy for the actual autistic people portrayed in the show.

Life in the House That Asperger Built said...

"You would need several hours to cover "ALL" of what autism is today. Also, I don't recall the show saying that it was going to cover every possible group on the autism spectrum."

Indeed one would need several hours to do such a thing. It would seem to me that if one wanted to bill the program as "AUTHORITATIVE AND BALANCED" (their words not mine)..one would take the time necessary to address the subject completely.

That's a requirement to becoming the "authoritative" work on something..But again, that's not the point..I was addressing the comment you made about people being offended that their place or niche on the spectrum wasn't represented.

The original argument..(you may want to read back and refresh your memory)..was that the "full range" (that would be both HFA AND LFA) wasn't represented and that the show didn't include interviews with autistic individuals.

chavisory said...

I'll just go for one more:

MJ, in your first comment, you say,

"You are offended that PBS choose to give a voice to those are typically unable to speak for themselves?"

But the thing is, they did not do that. They did not even try. THAT is what we're complaining about.

Rachel said...

Excellent post, Kim. All very well said. It heartens me to see autism parents and autistic self-advocates getting outraged over the same things. I wish it happened more often.

r.b. said...

I would imagine that McNeil gave his own view. I, at one time, could have had the same.

Perhaps society isn't ready for the idea that autism encompasses a vast spectrum.

Personally, my son will probably survive on his own. I don't criticize any parent who knows they must live forever, or make enormous sacrifice to contribute to the safety of their child for the life they will most likely have beyond the parent's protection.

I think some people are being very critical, and I don't believe it is the parents of children who face lifetime in institutions post parental loss, regardless of their ability to speak for themselves.
Yes, I've said it. There is such a thing as an uppity autist...

Life in the House That Asperger Built said...

@chavisory,

:stands and applauds:

Thank you. I too, am done. It's all been said.

MJ said...

"Indeed one would need several hours to do such a thing. It would seem to me that if one wanted to bill the program as "AUTHORITATIVE AND BALANCED" (their words not mine)..one would take the time necessary to address the subject completely."


authoritative (adjective)

1. Able to be trusted as being accurate or true; reliable
- clear, authoritative information and advice
- an authoritative source

2. (of a text) Considered to be the best of its kind and unlikely to be improved upon
- the authoritative study of mollusks

3. Commanding and self-confident; likely to be respected and obeyed
- she had an authoritative air
- his voice was calm and authoritative

4. Proceeding from an official source and requiring compliance or obedience
- authoritative directives

I think the report was going for the first meaning, not the second. This report was aired on a news program after all and only had an hour total.

Anonymous said...

NOW FOR SOMETHING COMPLETELY DIFFERENT: (sorry, cap lock on).

Parents as "Voice" present a real difficulty. Parents have accomplished a lot (I'm a parent, btw, and doing this for a l o n g time) but over time I've seen

-parents stop innovation - for example, parents who worked to create voc training programs (in segregated settings) went bonkers over inclusion programs.

-create incredible regulatory log jams, with regulations crafted in response to single specific incidents which in no way address the root cause, merely add another layer of administrative nonsense.

-approach things in a very existential way - younger parents of younger children have more energy, and so advocate aggressivley for their youngsters, while older parents suffer battle fatigue, and the needs for adults are therefor a shadow, not an active blip, on society's radar.

Back to the fray: HFA, LFA blah blah. Autism has no real etiology; all this is a construct on the part of the gate-keeping professionals to facilitate their access to the "disability" income stream. We need a revolution: to each according to their needs!

Nightstorm said...

Perhaps society isn't ready for the idea that autism encompasses a vast spectrum.

Well they better brace themselves, because here it comes.

I think some people are being very critical, and I don't believe it is the parents of children who face lifetime in institutions post parental loss, regardless of their ability to speak for themselves.
Yes, I've said it. There is such a thing as an uppity autist...


What the heck are you implying that self-advocates should what shut up and sit down?

Guess what bud, we have every right to be critical.

MJ said...

"He showed children but he did not speak to the children and talk to them about their autism and how it impacted them"

Go watch part 2 again. Notice that MacNeil talks to the children. Notice that other several other people talk to the children as well.

Now, that makes the first part of of your statement demonstrably false - "he did not speak to the children". But let me assume, for the sake of argument, that you only really meant to say the second part - that he did not have a real, in depth conversation with the children. He did not probe their feelings and opinions about how autism impacted them.

But, without trying to be too non-pc, how many of these children do you think really have the skill set to have a serious, in depth conversation about autism? A "typical" child around the same age would be capable of having a conversation like that as would a child who is "higher" functioning. So maybe one or two of the children featured?

And what about the wishes of the children. Perhaps you are ignoring the whole part of the conversation between Rodgers and Henderson where she asks him if he wants to talk about autism and he says no.

LOGIN HENDERSON: No. I do not autism.
SALLY ROGERS: No. You don't want to talk about autism?
LOGIN HENDERSON: No.
SALLY ROGERS: OK. No autism. I got that. Would you rather have some Play-Doh?

I guess we should have ignored his wishes and forced the child to talk about autism?

Now, I can almost hear your response on this point - MacNeil should have found children or young adults who could and would have had that conversation. But that is precisely the point. These kids can't have a proper conversation about autism, lets go find some other kids who can.

You seem to be saying that you are offended that these children were featured rather than others who would have been able and willing to talk about their autism.

So you tell me, are you saying that these children should not have been shown or that some other part of the show should have been cut so that other children could have been featured?

Joeymom said...

Yes, Mj, you are correct: you read into what I actually said, instead of looking at what I actually said. Easy to do with all the excitement here, though.

But if I hear one more person say, "People with autism don't have empathy!" one more time, I might slap someone. Or introduce them to my son.

sharon said...

There is simply no justification for undertaking a 6 part series on Autism and not speaking to people living with Autism. None. Nudda. Zero. Zip. I can't express how angry I am at the lack of respect shown.
I am in complete agreement with Kim that one episode could/should have been dedicated to speaking with a wide variety of people with Autism.

Sirenity said...

Wonderful and thought-provoking post, once again, Kim. I was disapointed too, that they didn't cover more of the spectrum and/or from viewpoints that are representative.
Glad that there is effort to increase awareness but...

Hugs and Laughter

KWombles said...

Some efforts are less than helpful, unfortunately.