What’s going on with “Autism 911″?
December 24, 2008 by Kristina Chew, PhD
Filed under Health
Seems likes CNN is running a three-day series under the name of “Autism 911,” in which they’re focusing on a California family, the Bilsons, whose middle child, 13-year-old Marissa, is autistic and has tantrums that are “off the charts and seemingly unwarranted.” In “Supernanny” fashion, an autism consultant from an ABA provider, Autism Partnership, has been called in and, it seems, the CNN show will see if it’s possible to “[rein] in” Marissa’s behavior.
Since she’s 13, I’m wondering if she’s entering, or isin the midst of, puberty? As noted, adolescence and the hormonal and other changes has made this school year—already challenging as Charlie started middle school—-even more, well, challenging.
And then there’s this quasi-sensationalistic statement on the CNN piece:
….many of us have never seen autism in action……
The statement’s said following Mary Bilton’s uncertainty about what to do, but it seems rather presumptive, as if most people have never seen anyone with autism (with the 1 in 150 prevalence rate for children, most people probably have met someone with autism, whether they know it or not) and as if “autism in action” is equal to tantrums (talk about a limited view of autism). A state from the co-director of Autism Partnership, Dr. Ron Leaf, says something more hopeful and, I’d say, accurate:
The one thing that Leaf believes they all have in common is that “[autistic persons] are not expected to do enough.” Leaf insists we have set the bar too low for what we think children and adults with autism can do.
You can say that again—-presume competence and it’s onward and upward; assume “he can’t do that”—-we can’t do that, for Marissa Bilton, for any child.
I just posted about that too, trying to spread the word since the cost of therapy is so high and we can learn for free. One thing I found interesting was how therapist Shroeder was stunned to see her different behavior at home compared to school. That is nothing new
I signe up for the AP mailing list and their documents for presentations are coming soon. I noticed a seminar in Feb on sleeping, toileting and eating I might be able to attend but leave little early to make bus home.
This is also going to be the first year I can attend the CSUN technology & disabilities INtl conference at LAX hotels in March. Now that Matt takes bus that frees up AM time to get over there.
Maybe they should have started teaching her to “mind” when she was a child.
I truly have little sympathy for an “over the top” behavioured child with autism when they get to be that old.
Not one that may get startled and have a panic attack and need to learn to calm themselves again. Not flapping, rocking, hands over the ears and other calming techniques required to deal with a sensory overload.
But one that has learned to melt at everything. My youngest (7) knows that he dislikes a wet shirt and instead of flipping out he takes it off and goes upstairs and gets a clean one. WOW!!! A severe non-verbal child can be taught appropriate behaviour without any THERAPIST teaching them. He also knows and obeys the word “NO”. On a farm the 2 most important words to learn are “stop” and “no”.
It’s called PARENTING and if you can teach a 2 to 4 year old to behave, you can teach anyone with a disability how to behave appropriately and deal with the situation around them.
My son wandered the mall with his hands over his ears yesterday. He never melted, and sang along to the Xmas songs he could hear through those fingers. He even sat nicely and had his picture taken with Santa. Not an ABA therapist in sight… ALL parenting.
S
The difference between home and school can be deceptive. Kids often meltdown more at home where they’re safe. I’ve had to reassure teachers that yes, this child does have autism; yes, you must be prepared for the possibility of a meltdown.
I missed the show and hope they air it again today sometime. American morning comes on at 6-9 am EST but not for Pacific time zone. I was up at 7 AM and it was over already. The family profiled is from CA so I hope it comes on later today. I may even call CNN to complain, not on their website either.
I dont have a DVR or TIVO, so might have to use a videotape for three hours to set tape and then rewind through it to see #2 and #3.
Farmwifetwo,
For some reason your comment hit me like a sucker punch.
Without knowing the wheres and whatfores of what someone has done, the passing of judgement seems rather harsh.
I know (a lot) of people who have felt that they did the best that they could, to good effect, and then adolescence threw it all in a cocked hat. I myself take it one day at a time.
For whatever reason this child and her family are having these issues, I wish them all a good resolution in finding solutions.
Happy Holidays.
To farmwifetwo,
Unless you have a child with severe nonverbal autism (i imagine you do not) then you really can’t imagine what life can become like, especially when the child is in her teens (puberty)and physically bigger. When my daughter realized she could just beat me up because she was bigger, then I needed supports… I was and am an excellent mother to my daughter but sometimes that is not enough..
Happy Holidays, Kristina and to your family.
“….many of us have never seen autism in action……”
Kristina,
as a parent with both an autistic and ADHD/eating disordered child, I wouldn’t say that that that staement is beyond the pale. If the behavior wasn’t noticealbly atypical, it wouldn’t be notable.
It is not right that in order to get needed help they have to volunteer to be on a TV show. It should be available- period. If an intensive ABA program is needed to maintain a child safely in the home then it should be provided by the same agencies that would otherwise pay for long term residential care.
My reaction to behaviorist interventions is captured in a sardonic aphorism:
“The Beatings Will Continue Until Morale Improves.”
Why does “discipline” always default in NT minds to negative attention?
In fact, “discipline” is far more important when it’s focused on advantaging positive skill sets. You know, like ignoring negative inputs, selecting one’s perseverations, etc.
“No” is all fine and good, but the adult autie is far more concerned about getting other people to say yes; overcoming wetware deficits that make social interactions difficult or impossible.
I might also add that it’s perfectly possible to learn everything there is to know about how Neurotypicals do these things and be unable to do them.
Yet, when autistic children start problem-solving these issues in kindergarten, the first thing that happens is that they are told “no.”
Oh, btw, it IS a spectrum, and there are intractable cases of everything. Autistics are human first, and as perverse and strange as anyone else.
None of the above, though, makes operant conditioning and torture acceptable, and that is what ABA is based on.
BF Skinner himself renounced it as an approach to be used on human beings. And no matter how warm and fuzzy it may become, whether or not you can make it non-abusive, I feel the fundamental assumptions are so elementally flawed that it cannot be considered an approach with wider general application than, say, shock therapy or gamma knives.
ABA works very well, in one sense. It will produce compliance in your presence. And that’s all. Furthermore, that’s all you will ever get – a compliant, but crippled individual. So it had best be reserved for situations where that is genuinely the best outcome that can be expected.
Meltdowns are not confined to the nonverbal portion of the spectrum.
If meltdowns were primarily a means of gaining attention, that would not explain meltdowns in the absense of anyone else around.
I suppose meltdowns could be done to gain attention but I haven’t observed them being “used” that way, for the most part.
@Paula
I tend to think that some meltdowns, while not exactly for “attention,” can be a way for the autistic individual to show a need for support or assistance from others in the room. When your ability to communicate is compromised in some way–and this is even the case in those with Asperger’s–you tend to go “0-to-60″ when facing frustration or other “brick walls.”
My son seems to melt down more wildly when I am in the room, and to me this looks like he is expressing frustration in an effort to get me to intervene and help him with whatever he’s trying to do. In that way, his meltdowns are more acute when others are present. However, this theory is difficult to test, because my son is rarely left alone long enough to know how he would handle frustration without others there to intervene.
@LBC,
It’s a point I’ve wondered about too—-the extent to which frustration gets expressed more when there are others around. I guess this would suggest that our/some kids have more “theory of mind” than might be thought.
I agree with the CNN article that most people have no idea what it is like to raise a child with autism. The spectrum is so vast, so even if you know someone with autism, they are not all the same. Stop being so little minded and judgemental of people until you have walked a mile in their shoes.
This is for farmwifetwo that needs a little dose of reality and to get off her high horse or donkey. I really think she would benefit having the therapist visit her home. They could teach her children it is not normal for them to walk around the mall with their hands covering their ears while singing xmas songs. Its far from what a typical child’s behavior would be. I think she is far from being a better parent then the parents portrayed on CNN. In fact, they are better to accept the help. She is ignorant and needs to stay out of the malls and keep her children on the farm with the animals because their behavior is far from normal. Stop kidding yourself.
I agree with the CNN article that most people have no idea what it is like to raise a child with autism. The spectrum is so vast, so even if you know someone with autism, they are not all the same. Stop being so little minded and judgemental of people until you have walked a mile in their shoes.
Dear Farmwifetwo,
When my now 15 year-old daughter was much younger, I used to observe parents of the older autistic children and be grateful that many of the issues they were dealing with were not relevant to my daughter. She was well behaved and we frequented restaurants, movies, took many plane trips, frequented the grocery store, participated in horseback riding, took her on the Disney Cruise, enjoyed ballets and symphonies. We were always grateful that even though she was autistic she was happy and loving and we enjoyed a family life.
When she turned 12 she started having horrible, uncontrollable meltdowns.
I would love the opportunity to parent this child. That would be so much easier than restraining her from her self-injury.
I find your judgemental attitude very hurtful and harmful toward parents who have spent their lives and their fortunes doing all they can for their children.
I have a 2 year old son with Autism and provide 15 hours/ week of ABA at our own expense. I think it is criminal to expect any family to pay $20,000 for 5 days of therapy! ABA is effective but it is NOT magic! Maybe if ABA costs were even remotely reasonable, more children would receive the services they need.