Thursday, April 05, 2007

The post-Oprah spin

So, did anyone else watch Oprah today - an episode called "The Faces of Autism"? What did you think?

I just watched it on TiVo. I have to admit that I went in with low expectations, having read criticism of the show in the blogosphere and elsewhere on the Internet. I expected the show to be alarmist and overwhelmingly negative, but I was pleasantly surprised. There was negativity - a lot of it. But there was also a lot of love, a lot of footage of autistic children who were not in the throes of difficult moments - children who were smiling and kissing their parents. The parents interviewed talked about their challenges, their exhaustion, the failure of a marriage, the sacrifices they've made, the stress on their neurotypical children - but they also talked about how much they love their autistic children, how much their children have brought to their lives, and how much richer their lives are because of them.

Of course, there are things I would have liked to see: An interview with an autistic adult, for one. Any mention of RDI or other promising educational practices or intervention strategies that went beyond "the importance of early intervention," for another. It struck me that most of the parents interviewed seemed to have similar backgrounds: children who were developing normally until sometime after they turned 2, at which point they lost their previously acquired abilities; pediatricians who brushed off parental concerns and failed to diagnose the autism until much later. Neither of those things were true for us - but are these experiences more common than mine? And if not, then why was such a small cross-section of parents selected for the panel?

So, those are my thoughts: it was not ideal, but all things considered, it exceeded my expectations.

What did you think?

27 comments:

Sam I Am said...

I have so many mixed emotions and was trying to put it to a post tonight and decided to cruise my favorite autism families instead for relief. I love how the father ended the show. I did not like Ms. Katie's "blowing vaccine steam", was surprisingly impressed with Ms. Autism Speaks VP on her views of how society should be supportive and not judgmental (but that was about it from her). In my head I am trying to formalize my thoughts of the sibling section. I don't know, too much to process tonight. I will tell you that I knew something was different with Sam from 4 months of age on. He did not develop normally until 2. He failed every well child check. Didn't have any words till 3, many motor delays. So yah, I thought it was interesting when they all had the (2 year) thing in common and really felt they were going to spin things and take it back to the 18 months and vaccines, but Katie handled that for them.

melody said...

I am about to watch it. I'll get back.

Jennifer said...

I haven't seen it so I can't comment on Oprah... but I can comment on Kyle :o) (as I often do)

While we were in the moment, with Kyle growing, we were frustrated when he hit toddler hood and cried a lot. And I mean a LOT - he was sensitive, and very often I was told by daycare that he'd had a 'sensitive' day... but he was hitting milestones... it was at 2.5 that we were getting concerned with his behavior - mostly aggression... but it was missed at 3.5 - he was diagnosed just last year - at 5.

Looking back, we see it clearly - much easier with that hind sight view firmly in place. The horribly time he had with any transition - breast to bottle, bottle to cup, bed time, the amount of crying probably due to his senses being overwhelmed, or not enough sensory input... but while we were in the moment he was our perfect little boy - it never occurred to us that there was something else going on.

And he didn't regress either... mostly it was the aggression and crying that showed itself - and his major obsession with sweatpants ;o)

March Day said...

I agree with your take on it, MOM-NOS. I had low expectations too, but was somewhat pleasantly suprised. I wondered the same thing about the "loosing skills at age 2" perspective throughout the whole show. I kept thinking about all the signs that autism was there from birth that I should have caught, but didn't. I'll probably blog about that later today instead of going into details here. The sibling thing really got me thinking as well.

I wish that they would have showed a better representation of the vast differences in kids on the spectrum. The kids they showed seemed to all be similar in that aspect.

However, it was a 1 hour show. I think to better cover the issues Oprah would have do at least a week long series. And personally, I don't think that people who are not affected by autism want to become that educated on it. Most of my friends tune out when I go beyond the "oh, he is doing okay" answer. They don't really want to know about it.

It was a start. And by far the best program I've seen on it thus far.

Mom without a manual said...

I was pleasantly surprise with Oprah. I felt that it gave a very balanced (love and frustration) perspective of autism. Still merely awareness but as one of your previous visitors said...I'm not sure there rest of the world wants to go past awareness.

Our situation is much like the majority on that panel. Of course, I agree that everyone's experience is different and a panel should represent that variance. I do remember Allyson Singer articulating that her daughter didn't meet milestones from the beginning.

JP did develop on schedule. He had words, socialized and did pretend play. He was social and liked people. I have pictures of him pretending to unlock the door with my keys and giving the cat drinks from his sippy cup.

Then the words went away somewhere around 2. He started freaking out in new situations and around new people. It took us until 2 1/2 to realize something was going wrong. We were diagnosed at 3.

We had to reteach him that keys open doors and show him how to pretend to feed others. This pictures prove to me that that these skills were there around 18 months...and then they were gone.

Ashley loves Leo said...

I too thought it went better than it could have. Ah...if only one hour could cover everything!

Awareness is good, IMNSHO. The American public must learn their ABCs before we can expect them to accept Autism for ALL that it is. How can one appreciate Shakespeare if they cannot even read?

Awareness gets children diagnosed.
Awareness gets children services.
Awareness gets parents talking.

Very exciting!

Anonymous said...

I agree with Momnos. It did not touch on those who didn't have the language from the beginning. And when the doctor tried to speak about the signs Oprah stepped in and said but they had the signs. I was a little upset about that. And what about the questions of low government funding, schools that are lacking the needs of these children, what to do after they turn 21 and the school system won't support them? What to do with them at an adult level? They really need a follow-up show. I konw it's hard to put everything in a 1 hour show but I think the View did a better job. I think they replayed that show today. I already have that one taped.

Jen

kristen said...

I was so excited to hear that Oprah was doing a show on autism. After watching it, I was a bit disappointed. I totally agree that the panel did not represent the "Bud"s out there. I think your situation (which is very similar to mine with my son) is more common. I am also an ABA therapist and I see many autistic kids. I don't think they did a great job of showing the "spectrum" of the disorder or the "faces of autism" as the show says.

Of course any awareness is good so I am thankful to Oprah for covering the topic. And to be fair, she did only have an hour. I was glad that they discussed the idea of people refraining from judging us moms out there and instead offering to help (yeah right). I have also never been a huge fan of the "Autism Every Day" video so that might be part of it. And not to be mean, but I have watched so many of these autism specials....I am getting tired of seeing these same people on all of them.

I also appreciated how Oprah took the time at the end of the show to address us parents of autistic children. Its nice to be ackowledged for your hard work and dedication to your kids. Usually moms (any moms) don't get that.

lizziehoop said...

Oprah didn't show anything that we as autism parents didn't know or already feel but I think it wasn't really directed to us and more to the people not affected in the same way. It showed the good and it showed the bad. I didn't like the one woman being able to squeeze in the part about the vaccines because that turned me away from focusing on the kids. I think either the 11 year old or his mom said something about the younger boy's brain being broken which I was a bit offended by - I like to think of it as the brain being wired differently. I don't watch Oprah at all normally so I don't know if this is a normal thing but it seems to me that the boy on stage was coached as to what he should say. He didn't answer Oprah's questions in a way that I would expect an 11 year old to answer.
All the guests seemed to have 'lost' their children around 2 years old with no signs of any problems at all before whereas I knew my son had a problem the day he was born. I too had the doctor that said there was nothing wrong though. I don't know. I think it will have raised awareness for autism and those kids but there was only a brief mention of the high functioning kids and I didn't hear anything about Asperger's (though I kept leaving the room to get the laundry...). No mention really of aggression towards others either which is a problem for some. Hopefully what it did was get 'non-autism' people to want to learn more. I loved the part about having others offer to help. Most people are so judgemental that they will offer their opinion on what they think you are doing wrong without even considering that something might be 'different' with your child. I always tell people that we would get more empathy and sympathy if there was a 'look' to a child with autism. Maybe if we branded them it would make everyone else more compassionate?

Daisy said...

My "Oprah" post is up, too. I found it a rather simplistic treatment of a complex topic. I was happy to hear at least two of the parents talk about the joy their children bring to their lives. Stop in if you wish: http://compostermom.blogspot.com/2007/04/open-letter-to-oprah-and-her-producers.html

Estee Klar-Wolfond said...

I found it very contradictory. On the one hand autism is a terrible "affliction." On the other hand, they "can do all the things that [others] can do, are terrific, can teach us many lessons..." What is their stand?

Also, Katie's son clearly appeared autistic in the clip where she claims he is not. I noticed a lot of echolalia.

Another Autism Mom said...

Estee, I thought the same thing... The "talking" he did was basically echolalia. But still, that was much better than being completely nonverbal, like he became months later. It was a big regression.

MOM-NOS said...

That's an interesting perspective. I hadn't thought about it as echolalia, probably because it didn't sound like the sort of echolalia that Bud used when he first started talking.

If I'm remembering correctly, the mom said things like "Say 'hi, baby'" and the boy responded by saying to his brother, "Hi, baby." (Am I remembering correctly? I've deleted it from the TiVo so I can't check.)

When Bud was younger, newly verbal, and almost exclusively echolalic, he probably wouldn't have responded at all to a prompt like that. (A more likely scenario would have been me saying "Say 'hi, baby,'" and Bud responding "Tinky Winky jump for fun!")

I think it was a long time before he would have been able to use echolalia successfully in a scenario like that, especially since it required the ability to use mitigated echolalia (by dropping the "say" and pulling out the "hi, baby" as the salient part to echo).

I know every child is different and that this certainly could have been echolalia, but if it was, it was probably pretty "sophisticated" (or more developmentally advanced) echolalia.

Kristen said...

On the whole echolalia thing, there are 2 types. One is when a child repeats what is said to him/her immediately in attempts to process the words. That's the "Say 'hi' Johnny" and he says, "Say 'hi' Johnny" right back. The other is called, "delayed echolalia" which is the whole "tv talk" or scripted speech. That is more of a stimming behavior. That's my understanding of it. Both common in autistic children, but different.

MOM-NOS said...

Kristen, I guess what kept me from thinking that I was seeing echolalia from the boy was that he didn't say "Say, hi baby," but, rather, just "Hi, baby." Given that he was only two years old, it sounded to me like a very typical exchange between a parent and a new talker.

charmian said...

The answer to why the stories seem similar is that these parents know each other from high priced Autism Schools or from the Autism charity circuit. More severely involved children attend schools exclusively for Autism, which by necessity fund raise, so you have parents who are willing to speak on camera who are the parents of more "classicly" autistic children.

Regressive Autism is probably the most frightening kind and it's outcome is often poor. My heart breaks for Katie Wright and I am grateful that she's turned her personal grief into action.

I live in Southern Westchester New York and I recognized the local supermarket so I imagine that in addition to NYC and maybe Southern Jersey it was filmed here and these kids go to school here.

I'm kind of glad they don't show kids like mine because he'd come across like an innocent little genius (which he is to me) but that doesn't raise money, and Autism needs money.

Now that my son is 7, I too am tired of early intervention---first signs rhetoric, but I needed that five years ago, so I don't begrudge new parents their learning curve.

I have strong feelings of support for the women who produced Autism Every Day and for the women who were featured. The Autism Speaks VP is named Alison and the Producer is named Lauren and they are brave in my eyes.
MOMNOS knows I feel this way but I drink Dunkin Hazelnut and REMEMBER the Beatles on Ed Sullivan so I have stature on this blog, thank you very much.

melody said...

I agree with the person who said this show was not for the parents who "know" autism. The children represented were very similar and not representative of the spectrum. However, they did present for the general masses a more dramatic and memorable introduction to autism. And I think that was Oprah's intention for the show...to bring to the masses the awareness that autism exists.

So I agree...awareness is good.

Steve said...

Our tivo decided not to record this Oprah episode, even though my wife tivos each show daily and we also tivo shows with autism or autistic in the description - oh well, we'll catch it in reruns.
Anyway, I wanted to throw our hat in the ring for regressive autism. Our story is almost word for word what Mom Without a Manual said above - everything was by the books until age 2 and we didn't really acknowledge the loss of skills until 2 1/2 and then he was diagnosed at 3. One interesting tidbit there is that he loved making animal noises before his 2nd birthday, then lost that skill completely, and just now (at almost 8) has learned it again.

MOM-NOS said...

That's right, Charmian - you have "blog cred". :-)

Margaret said...

Hi MOM-NOS!

I did enjoy the Oprah show, I must say. I thought she handled it well and like you, I would have loved an interview with a adult with autism, but it's only an hour show.

My experience is the same as yours - my son was developing normally, lots of eye contact (with family), lots of vocabulary and all of the milestones being reached, first words, walking, responding to name, etc. The only problem was when he started playschool and the teacher noticed no eye contact. We had his language tested and found out he had a severe expressive language delay. The ball started rolling after that with the actual diagnosis - PDD-NOS.

As far as my dh and I were concerned things seemed normal. Had he been born second, I probably would have noticed that we weren't having actual conversations, but he was my first and I didn't know.

/Margaret

MOM-NOS said...

Hi Margaret! Actually, our experience was like yours in that Bud was our first, so we had no basis for comparison. But we definitely knew he was quirky from the start. He did miss developmental milestones, including using words - he didn't use any at all until he was well past two and echolalia emerged. We knew that there was something, but we weren't alarmed by it - we just thought he was developing more slowly than the books outlined. Now that I think about it, maybe this should be its own blog post...

Anonymous said...

the world may not want to go beyond awareness, but at nearly 1 in 150-at some point everyone will know someone effected. so it should be shoved down everyones throats until someone figures out what is going on.

VTBudFan said...

Hi - As a mom of two NT kids (as far as I know!), I just want to tell you that I so appreciate learning from all of you who are parents of kids on the autism spectrum. Some of my favorite friends have kids who are autistic (or on the spectrum), and I hope that learning about autism will help me be a pal to my friends' kids, or any kids with autism I might meet.

In addition, so many of the posts I read here demonstrate such sensitive, thoughtful, devoted parenting that I just like to be inspired by you all.

Thanks!

Anonymous said...

I was somewhat disappointed in the Oprah episode. Awareness is great. It is very important. But the picture painted was extremely limited and one-sided. I didn't like the fact that the children were very similar and were all children who regressed around the age of two, and that the show focused so heavily on the Autism Every Day documentary.

That is not the first time I had seen the documentary, and I did not like it the first time I saw it (online). It paints such a "poor me" picture of the parents without focusing at all on the struggles of the children. I empathize with the parents, I do... I am, after all, a parent of a child on the spectrum. But this documentary reminded me more of something that Heraldo Rivera would produce. Let's see if we could frighten people into opening up their pocketbooks... Awareness and serious funds are needed, but I was insulted by this narrow documentary.

I look at the Oprah show and the Autism Every Day documentary and I think, "How is this going to help people understand my high functioning, highly gifted five year son who is extremely quirky (and who also coincidentally is obsessed with the Teletubbies). In my opinion, awareness needs to go beyond the severely impaired. More and more children are being diagnosed on the SPECTRUM, and they are not all low functioning. It is an illusion to think that higher functioning children are less affected, for they very well understand that they are different from NT children and many suffer lifelong depression.

Many posts mentioned that the public may not want to get too much into the topic of Autism, but with the stats at one in 150 and rising, who is the public? We are the public.

Anonymous said...

Hmmn... Upon further reflection, if it weren't for Heraldo Rivera, children with autism might still be be institutionalized. He has actually done a lot for children with disabilities, including autism.

I wonder if he'd be interested in doing an expose on how little our government is contributing financially to finding out why the rate of autism in our country is exploding.

Aiden's Mommy said...

For months I had boycotted Oprah because her producers and herself had commented that they refused to do a show on Autism because it was too sad of a subject. As if!! African girls and their mothers being rapped in their village twice a month isn't? I was so angry.

Suffice it to say, I went into this with pretty low expectations. I was pleaseantly surprised at her one hour coverage and couldn't help but giggle when she mentioned she had read thousands of letters and requests asking her to do this show.

WE ARE A POWERFUL BUNCH, WHEN WE STICK TOGETHER!!

I loved for the most part that she actually did a portion of the show on stimming behavior which, I think is greatly overlooked when talking about our kiddos and our struggles. It's one of the parts I find most difficult to explain and bring awareness to to the lay person.

Beth (aka Niksmom) said...

Hi, I wanted to jump in with my two cents. Mom-NOS, I just stumbled onto your blog today as I was searching for info about what to do on rainy days with my 3 yr old on the spectrum. Anyway, I have to say, I was mostly disappointed by Oprah's myopic coverage of the issue. Yes, early intervention is VITAL but so is ongoing support and recognition of the broad scope of talents and abilities of people with autism.

I think Oprah fell very short of the mark in not including adults with autism or, at the very least, highlighting some highly accomplished individuals with autism.

I was also disappointed not to see my own circumstances addressed. (Not b/c I am narcissistic but b/c I don't think we are so very unique in our experience!) My son was born extremely prematurely (3 months early) and has a "significant" medical history which includes the first 7 months spent in the NICU. Yes, he has significant delays but, at some point, my husband and I recognized that there was something not quite normal about Nik's development. He didn't hit ANY of the normal milestones and, beginning around 15 months, would gain a word or sound and then lose it a short time later---mama, dada, animal sounds---all gone. When we expressed specific concerns about autism, we were told by *so many* professionals not to worry, he'll catch up.

I'd love to see more coverage (not just on Oprah) about what families can do when they *know* there is something amiss and aren't being taken seriously? Ok, sorry for the digressive rant there...(Is that even a word--"digressive"? :) )

Anyway, Mom-NOS, thanks for your wonderful blog. You are now marked as part of my "faves"!