Whose Planet Is It Anyway?

Thursday, May 17, 2007

What's Wrong with Early Intervention?

I was going to comment on a post about early intervention by Joey's Mom, but I decided to write my own post instead because this is a complex topic that could use more in-depth discussion. Joey's Mom wanted to know why some people object to early intervention, which she found helpful for her son; what's wrong with it?

First of all, as Camille mentioned in a comment, it's necessary to define our terms. Many early childhood services have gotten little or no criticism. There seems to be a general consensus that early speech therapy, physical therapy, and occupational therapy are useful services that are well worth the expense. To the extent that there is a controversy, it has to do with behavioral programs—ABA, in particular.

Part of the problem is semantics, as Joey's Mom suggested. The word "intervention" has strong connotations of urgency and negativity. One intervenes to put an end to a dangerous situation. A family might do an intervention with an alcoholic or drug addict, for example, as a last-chance effort to save him or her from a tragic life on the streets. When we talk about early childhood education for our non-autistic children, we don't call it intervention—we just call it teaching.

Some would say that it doesn't matter what we call it, as long as autistic children get services. But it does matter. When alarmist language sends parents into a panic and convinces them that they must fill every waking moment of their child's days with treatments and therapies, or else the child will be hopelessly lost, that puts a tremendous amount of unnecessary stress on every member of the family. It also portrays autistic lives as less meaningful and valid than others.

Of course, ABA is not solely responsible for the mass hysteria surrounding autism, and I don't think anyone contends that it is. Autistic adults object to ABA chiefly because it has a strong emphasis on suppressing autistic behaviors. This criticism is separate and distinct from the semantics issue and from the question of the effectiveness of ABA teaching methods (as to the latter, it hasn't been scientifically established whether or not ABA has any significant advantages over other methods of education).

In an article in Time Magazine last year, a behavioral therapist was quoted as saying that 50 percent of ABA instruction consists of teaching autistic children "behavior to look good." I see at least three serious problems with that. First, the considerable amount of time spent teaching these children to suppress their natural autistic behavioral patterns is time that the children otherwise could have spent learning useful everyday skills, as well as just playing and enjoying a relaxed life with their family (all children, whether autistic or not, need some amount of unstructured downtime to rest and recharge their energy). Second, when young children are forced to behave in ways that they find uncomfortable or distressing, one should question whether the results justify the distress to the child. (On the long-term psychological effects of being forced to hide one's true self, I recommend the essay Let's Pretend on the autistics.org website.) And third, in our diverse multicultural world, do we really want to teach our children that rote conformity to a narrow set of social constraints is essential?

ABA programs often emphasize making eye contact as a major goal. Autistic children tend to avoid eye contact because they find it unpleasant and distracting. A recent article on MSNBC.com describes teaching an autistic child to make eye contact by means of behavioral therapy:

"We used to say it was like it burned his eyes to look at you," said his mother, Tamie Day of Antelope, Calif. "It was like a physically painful thing for him. It wasn't just that he wasn't looking at us; he was purposefully looking away."

...Before he turned 2, Jacob began daily intensive behavior treatment...

He gets 33 hours of weekly home treatment with trained college students, including six hours most days. The tab is $70,000 yearly, paid for by California, one of the few states that pay, through state and federal funds, for early intensive autism treatment.

Jacob's sessions involve lots of repetition, and rewards, including praise and treats, for a job well done. For example, to improve eye contact, teachers bounce him on a favorite giant ball, then stop. If he turns to look at them, he gets praise, maybe a piece of candy, and more bouncing.

Does young Jacob actually feel more comfortable making eye contact as a result of this behavioral program? Yes, to some extent he probably does, in the same way that a person who has a phobia can be desensitized through repeated exposure. But here's a hypothetical scenario along the same lines: If you had a small child who became upset whenever she saw a spider, would you hire a team of behavioral therapists to dangle spiders in front of her face every day and reward her when she looked at them?

Perhaps you're thinking that the two scenarios are not comparable because a fear of spiders is only a minor inconvenience, while eye contact is a matter of proper social functioning. But when you look at social expectations across different cultures, there are other parts of the world (mainly in the Far East) where making eye contact is considered impolite and is carefully avoided. The human brain is not hard-wired to require eye contact as a condition of meaningful social interaction; it's just a cultural preference.

Of course, for a child growing up in Western society, it is useful to learn that there is a cultural preference for eye contact. This does not have to be taught by repeatedly demanding that the child make eye contact in an intensive early childhood behavioral program, however. As the child grows older, the parents can explain it in the same way that they teach the child about other cultural issues. It is a myth that autistic children must first learn to make eye contact before they learn to speak; to the contrary, because eye contact is distracting to autistic children, they may learn speech more effectively if they are allowed to look away and to give their undivided attention to listening.

Bottom line: Early childhood services that help children to acquire useful skills are worthwhile, but parents would be well advised to stay away from expensive and time-consuming programs that focus on "behavior to look good."

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  • Bottom line: Early childhood services that help children to acquire useful skills are worthwhile, but parents would be well advised to stay away from expensive and time-consuming programs that focus on "behavior to look good."


    By Blogger Joeymom, at 5:45 PM  

  • As usual, an excellent post. My issues with training autistic behaviors out of children are of several varieties. For one, I hate the idea of enforcing conformity for its own sake; this just makes the prejudice against those who still have the nerve or inclination to be themselves (and toward those for whom these "treatments" just don't take) seem more justifiable to the controlling types in the majority.

    I wonder if a child born into a culture where eye contact is seen as rude, and being personally inclined to look directly at others, might be treated to such expensive and time consuming interventions. Not likely is it? Only the citizens of wealthy post-industrial Westernized nations would find this sort of thing reasonable.

    The more our society pushes for conformity, the more miserable a life we create for those who won't or can't fit the cookie cutter shape.

    By Blogger Bev, at 8:07 PM  

  • Almost forgot to mention all of the good things that 70,000 dollars could buy. That's a lot of useful therapy, the start of a decent educational fund for college, and with money for shiny, spinny toys left over!

    By Blogger Bev, at 8:09 PM  

  • Thanks. :-) I'm still afraid of the message that parents can't deal with autistic kids. That they are so outside the realm of normal and human that only paid professionals can teach them.

    The parents get disenfranchised. Parents who CAN NOT get the "magic" services will have no confidence in their ability to raise the child, expose the child to learning experiences, even teach the child to communicate (or learn the child's language), which is something that some parents just do... even with "classically" autistic kids.

    By Blogger Camille, at 3:53 AM  

  • Talk about putting parents into a frenetic stress. I see our 'former selves' at the pediatric neurologist almost 3 years ago (WOW that long!) with him telling us "Get as many hours of discreet trial ABA as she can stand, 40 hours if you can" Holy canoli, talk about throwing down the gauntlet! This BEFORE there was even a MENTION that the state would pick up this tab.

    After we stopped crying and found out that we weren't going to have to put up a sign "will work for therapy", we realized that 40 hours was not practical, that she needed OT and Speech (maybe some sleep and a chance to 'veg' too) just as much. We also helped transform our team from a discreet trial to a more play based, more integrated therapy experience for her...

    By Blogger LIVSPARENTS, at 12:38 PM  

  • Thank you for this....
    May be we are not bad parents after all.
    It really is a very good peice

    By Blogger A Bishops wife, at 1:15 PM  

  • Thankyou,

    every word you said is true.

    By Blogger Mike, at 7:45 PM  

  • Thanks for being the 'most comments' person to our blog. We're hoping to find more blogging friends.

    We've been a bit overwhelmed by Autism and are willing to take anything we can get that will help us and our children. (can anyone say, Extreme Home Makeover?)

    3yr old brother (Classic) has just been accepted to a no cost 'Autistic only' preschool for this next fall. Their primary method is ABA. Now you may call us shelfish...but we hope he'll learn a number of 'skills'. If he can learn to not strip off his clothes and empty his diaper onto the walls, maybe to not bite his 2 yr old sister multiple times while drawing blood, or possibly not escape from the backyard by scaling the 6 ft fence (yes, really!), and learn ANY word.

    We just worry so much of where he will be in 10 or 20 years. Independents would be good for us, BUT especially for him.

    You said: "When alarmist language sends parents into a panic and convinces them that they must fill every waking moment of their child's days with treatments and therapies, or else the child will be hopelessly lost, that puts a tremendous amount of unnecessary stress on every member of the family." We do stress that we are not able to do enough or soon enough. And being poor as dirt doesn't help (pitch:our website - www.autismbites.com).

    If you or others have words of wisdom or comfort... thanks!

    By Blogger Dadof6Autistickids, at 1:31 AM  

  • ECI is even the name of the bureaucracy in Texas. The name intervention sort of scared me at first.

    The problem here was the level of expertise. Figuring out that Tiger was Autistic should have happened a little faster. Bless her heart, our caseworker was fresh out of college.

    I have to say something though. I needed more intervention than Tiger did. Sure, he needed therapy. But, I needed an education. I was three years into dealing with this before I really realized that autism is not a disease.

    Thank God Almighty that none of the folks that were trying to help Tiger were kooky. Because at several points I could have fallen for some pretty scary stuff.

    I am all for early intervention. Especially if it concentrates on informing the parents.

    By Blogger bigwhitehat, at 9:53 AM  

  • Thank heavens for the Autism Hub and JannaLou for pointing it out to me. I struggled alone for almost 3 years against professionals who want my son in intensive ABA. He had "early intervention" which I see as a synonym for "Birth to Three". Having a son with Downs first got me quite familiar with that concept. In fact, Ezra was getting speech, pt, ot and education by age 2, a year before he was dx-ed with autistic disorder. Now I have learned of BAP, which I am sure includes me. So when I was denying Ezra ABA, it was very much based on how I would feel subjected to 40 hours a week of training. It always sort of felt like...well sure, you could probably train a dog to talk if you drilled him 40 hrs a week. It just never felt right. Thanks abfh for explaining it so well.

    By Blogger Suzanne, at 1:51 PM  

  • Hi, I'm Ranunculus (Artemisia's sister)...I just wanted to clarify something for everyone. There are many wide misconceptions circulating about ABA that I'd like to comment upon. ABA is basically the science of teaching; there is nothing specific to ABA that promotes the emphasis on decrease of "autistic" behaviors or the increase of eye contact, etc. The selection of skills to be taught has more to do with the individual practitioner than it does ABA. I can understand why many people associate these things (and other "hallmarks" like discrete trial) with ABA, but to those of us who are professionals in the field, it would be humorous if it wasn't so damaging...The "professionals" touting these "rules of ABA" are more often than not undereducated and uncertified. ABA is simply the practice of examining research to determine effective methods of teaching and collecting ongoing data to ensure that learning is occurring in each individual student. One could use ABA to teach stereotypy, to strengthen individuality, to teach a person how to stand up to those who are intolerant of neurodiversity. As a science and an application, there is nothing that "prescribes" the increase of eye contact or the decrease of stereotypy, and those of us who are certified behavior analysts are sick of this misunderstanding. We want to teach people MEANINGFUL and FUNCTIONAL skills to make their lives better; our aim is not to make all autistic people just like everyone else. For God's sake, why do we work with autistic people? Because they're so much more interesting and fun than neurotypcials!

    By Anonymous Ranunculus, at 2:33 AM  

  • Hi Ranunculus, I'm glad you stopped by. When you are teaching autistic children, what skills do you focus on teaching them?

    By Blogger abfh, at 9:49 AM  

  • Before we (BCBAs at our agency) select skills, we do a thorough assessment of what things are preventing the student from fully participating in their environment, which includes taking into consideration their family's culture and values, the student's community, and the student's strenghts and preferences. For a lot of kids, the focus in on language or alternative means of communication so they can get their needs met and express opinions. One of the things we teach almost every child we work with is 50 ways to say "no," or "I don't want to," "I'll do it later," "I don't like this," etc. In my opinion, social skills are the most important; NOT acting like everyone else, but being able to read a social situation and understand why people are doing certain things...the ability to make usually-accurate guesses about why people act the way they do can decrease a lot of anxiety for anyone, and I've found that that is the source of anxiety for a lot of my kids. If someone can't read social situations and make predictions about what people's reactions are going to be, the world is a very unpredictable and scary place. And yes, we do teach eye contact, but not for the sake of conformity. For a lot of students, it makes sense to desensitize them to the uncomfortable feeling of making eye contact because that skill is going to help them in a lot of situations (i.e. job interviews) later in life.

    I think there are 2 things that I'm passionate about: Improving the world in which we live in by increasing appreciation for neurodiversity, and also teaching those with differing skills how to live successfully in our current world until we get to that point.

    By Anonymous Ranunculus, at 2:27 PM  

  • Sorry for the lengthy posts!!!

    By Anonymous Ranunculus, at 2:28 PM  

  • No need to apologize for being lengthy, Ranunculus; I like it when my posts spark lively discussions!

    You may be interested in this post by Kassiane on teaching autistic children to say no.

    Kassiane has Rett Syndrome and calls herself the "Rett Devil" on the Internet because she's raising hell about disability rights.

    By Blogger abfh, at 9:47 AM  

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