Omnibus Autism testimony: Dr. Lord on what makes autistic kids improve

18 Jun

The following is transcribed by me from the first mp3 file for May 28th. This part starts around 41 minutes 24 seconds.

Ms. Ricciardella: Do children with autism, in general, improve?

Dr. Catherine Lord: Absolutely.

Ricciardella: What percentage? Do you know?

Lord: I mean I think that all children with autism improve in some ways, and how much is highly variable.

Ricciardella: Would that include children who have a regression in autism? Do they improve as well?

Lord: Yes.

Ricciardella: Do we know why?

Lord: No. I mean, some of the improvement seems to be getting back on developmental course. It’s like asking why do normal kids learn to do the things that they do. We can describe how they learn things but that process of how do kids learn to walk or talk when no one is really teaching them, we don’t know. And that’s the same for autism. We know that behavioral treatments make some difference but it’s a relatively small amount of difference compared to that force of development.

I’m not so sure that it’s only behavioral treatments that make “some” difference, but I agree that whatever therapy or teaching is provided, professional or parental, it’s the “force of development” that is the main thing that causes children to…. develop, which I believe is another way of saying, “improve.” I don’t believe there’s anything that one can do to speed up that force of development. Though I think it’s obvious that judicious use of reasonable kinds of therapies would probably help any autistic child make full use of what abilities he or she has to work with at any given point in time.

20 Responses to “Omnibus Autism testimony: Dr. Lord on what makes autistic kids improve”

  1. farmwifetwo June 18, 2008 at 12:46 #

    My tutor (retired school teacher) when I started my eldest with her told me “All children grow… even those with delays… it will come”. Nearly 3yrs later… Both have shown that growth and development, at different speeds, different strengths but they are different children, and only one had 8 LONG months of “behavioural” treatments (NEVER AGAIN!!!)

    I’m now waiting for “The brain that heals itself” from the library and looking for more information on the Arrowsmith school.

    S.

  2. alyric June 18, 2008 at 19:26 #

    “I don’t believe there’s anything that one can do to speed up that force of development.”

    Nope but there may be heaps you can to to derail the process, but not permanently I think (hope). At least not according to the ” Myth of the First Three Years”, which is really about myths of neural plasticity. Apparently there is no proof that younger kids are more plastic and malleable than older kids. People are apparently plenty malleable for most of their lives.

    I take great heart from that book, because it essentially means that ABA is not likely to cause permanent harm to hyperlexic learners, that PBS won’t do irreparable damage to people who learn by making mistakes, that TEAACH won’t really hurt the kids labelled mentally retarded by giving them a colour chart and not much else and that a child will eventually overcome the floortime emphasis on teaching imitation when the poor kid can’t learn that way no matter how much he or she might want to.

  3. farmwifetwo June 18, 2008 at 20:24 #

    “If your kid isn’t (a), (b), (c) or (x) in the first 3yrs you are a crappy parent and your kid is a complete failure”

    Rule #1 of parenting… toss the parenting books.

    Rule #2 read the information.. all of it… and take those pieces that fit into your world, your goals, and make your own path.

    S.

  4. farmwifetwo June 18, 2008 at 20:25 #

    Sorry should edit Rule #1 – toss the parenting books that say your kid will fail if you don’t do exactly as they tell you to.

    Or.. get rid of the IBI/ABA therapist when he tells you that….

  5. Joseph June 18, 2008 at 21:10 #

    We can describe how they learn things but that process of how do kids learn to walk or talk when no one is really teaching them, we don’t know. And that’s the same for autism.

    That’s a key point. People sometimes complain that there ought to be something that causes the “improvement” and we need to figure out what it is. The same is true of non-autistic children, and it’s no doubt an intractable problem.

    Nevertheless, I think one type of research that should be done involves studying successful adult outcomes.

  6. Leila June 18, 2008 at 21:38 #

    That some kids naturally improve more than others, and we don’t know exactly why, regardless of the amount of therapy they got, there’s no doubt about it. However there ARE things that can be done to speed up/improve a child’s learning process (whatever is his functioning level), and that is where the therapies come in handy. A week ago my son didn’t know what a rhyme was, and now he does because his therapist was able to get his attention to learn and understand this important school skill. How long would it take for him to learn this in a classroom full of kids, without any intensive one-on-one teaching? My point is, therapy is essential to give autistic children at least the basics, the building blocks for them to start figuring out many more things on their own.

    I get that the author is probably posting this to show the curebies that “recovery” is not due to miraculous DAN treatments or just because of ABA therapy, but mostly due to the own child’s development naturally occurring and giving him/her more neurotypical traits. But we have to be careful with the assumption that behavioral therapy is worthless…

  7. Ms. Clark June 18, 2008 at 22:14 #

    Leila,

    The author, me, never said anything like “therapy is worthless”. My own child got a little bit of speech therapy and lots of physical therapy and some occupational therapy and years of “special education”. That was mostly after my own, “early intervention” of teaching the child about words at age 2. I had started to teach my ASD child to read at about 24 months. What I did was show my kid short words on cards like, “CAT” and “FOX” and “BOX” and I would say, “C-A-T cat” and “F-O-X fox”

    I repeated these a few times, maybe 15 times or so for each word, then I could ask my baby… “What is F-O-X?” and 2 year old baby would say, “fox” and so on.

    At first I thought that I was teaching my kid to read, then I realized that really what it was that the kid was learning to say, “fox” after “F-O-X” and “box” after “B-O-X” which was still pretty amazing, but not really reading.

    And it seemed like I was kind of freaking out my friends who were normal parents of normal kids who couldn’t do this (the parents didn’t try, so I don’t know if they could).

    So I waited until my kid was about 3 1/2 and started to really teach my kid to read and write. I read up on how that was done and made my own flash cards, etc. It was pretty intensive, but loads of fun for both me and my kid. By then I also had a second baby. That one wasn’t so interested in learning to read until age 6 when I taught that kid to read some 6th grade or higher level material quite fluently aloud.

    My own mother taught dance to small children and she would teach rhythm and rhyme with poems that the children would clap to. So the children learned syllables and so forth.

    There are tons of things that parents can teach their kids but they don’t. There are tons of things that some kids just pick up on their own and don’t require any special teaching. Which is not to say that teaching is useless (see my experience teaching my kids to read).

    I also taught my kids addition before they were in school with a board game and homemade “Cuisenaire” rods and blocks, I made myself. My ASD kid had some real problems with math, the younger one picked up stuff that the older one was struggling with when they were ages 5 and 3.

    I agree Alyric. One thing that was emphasized in the developmental psych classes I took was that the “critical periods” thing is tremendously oversold, not that critical periods don’t exist at all, but these critical “windows” are fewer, larger and more flexible than people tend to think.

    The thing is having these “critical periods” work well for separating parents from their money. ACT NOW or IT WILL BE TOO LATE for YOUR CHILD and it WILL BE ALL YOUR FAULT!!

  8. Leila June 18, 2008 at 23:27 #

    Ms. Clark, I was mostly referring to a previous comment by farmwifetwo… Of course we as parents can be our children best teachers/therapists, but we are not all supposed to intuitively know the best methods available. Some things are better handled by experts, of course following the parents’ input. And I can be there for my son in his toddler years for most of the time, but what happens once he’s in the school setting the whole day. I want more research on educational methods and more training for the teachers. I believe my son is brilliant but he may not excel if the environment and teaching resources are not adapted for his optimal learning.

  9. Ms. Clark June 18, 2008 at 23:39 #

    Leila,

    Sorry for the confusion over who you were writing about. I wish all parents were as interested in teaching their own kids to read as I was. I didn’t know my kid would eventually get diagnosed with an intellectual impairment. You can imagine that I thought my first child must be a genius because of how easy it was to teach him/her to read.

    And my kid didn’t seem to have hyperlexia, at least not like those kids who teach themselves to read at age 2 and pick up encyclopedias at age 4 and just read them.

    I wonder sometimes how my disabled child wold have done in school without the many hours of “intensive early intervention” I provided just out of being a geeky parent. Also, it was kind of a fad back then that parents were told they could hold up flashcards of famous paintings and teach their 3 month old babies to appreciate and identify Monet and Rembrandt.

    Some parents are able to homeschool their kids. In some ways I think that is really ideal for autistic kids, though it’s impractical for most parents these days where both parents must work outside the home.

  10. Leila June 19, 2008 at 01:17 #

    Ms. Clark, I think my son is hyperlexic, even though he doesn’t care about reading encyclopedias and he only started reading phonetically at 4 (I kinda gave it a push by exposing him to the right teaching materials). In any case he learnt by himself just by watching videos (Leapfrog) and playing computer games (Starfall and character games for preschoolers) and could sight-read at 18 months old. He’s interested in age-appropriate books only, which is cool with me. But even though he can sound out words perfectly, I’m not sure if he always understands the meaning/contents. Also, he doesn’t have a good grasp of grammar/pronouns, etc. I have my own theory that if I found a good book that teaches English as a second language (breaking up all the grammar rules, pronouns in a basic way for people that didn’t grow up knowing what “you” or “I” means) it could be a useful resource for him. That’s something I’d love to debate with an education specialist but I don’t know any that focus on literacy for autistic children including hyperlexic ones.

  11. farmwifetwo June 19, 2008 at 13:20 #

    Leila, my issues with ABA stem from the absolute ignorant therapists I had. Their “if you don’t do exactly as we tell you.. your child will fail” attitude and the fact they were daycare trained, not trained to be therapists of any kind. And that was the PROVINCIAL program, not a private one.

    Truth is, as a parent that homeschools (30min/child every night/weekend/summer) as well as them going to regular school. Eldest is regular Gr 3 program, youngest in Gr 1 is in a full inclusive modified program (PEC’s to teach – language arts, social studies and science)

    The concepts of ABA, Floortime, Miller, SCERTS etc is used every time you 1:1 teach a child. They do “x”, and then they get free time in my house. I have found that as long as you are willing to put work into it… there is no such thing as the latest methods… it’s 100% parenting the way your kid learns… and being the parent… you know how your kid learns and modify accordingly.

    I have paid for considerable amounts of private speech therapy and private speech daycamp programs. They have both gotten or currently get speech and OT at school.

    I’m not against therapy since my #1 goal is complete independance. What I am against is these therapist and their “one size fits all” mentality. No child is the same, no child with autism is the same… and those teaching ANY CHILD should make their own “therapies”, their own teaching methods based on the child and their learning strength’s… not the label’s.

    Read ALL the material out there, even if it doesn’t interest you. Get a psychometric assessment done so you know their learning strengths, weaknesses. Then make your own ‘curriculum’ and either have your child taught that way or do it yourself. Your child will do much better than following any method.

    I am currently reading “Your eight year old, lively and bright” by Louise Bates Ames and Carol Chase Haber. There is a complete series of these developmental books, I do recommend them.

  12. farmwifetwo June 19, 2008 at 13:23 #

    Leila – may I recommend the “Edmark Exercises”. It is either a paper version (which I have) or computer version and it’s to teach ANY child to read. Since the little one can sight read all the words I am using it for the following directions and reading comp components.

    Starfall and LeapFrog…. are the BEST!!!!! Don’t forget Magic School Bus.

  13. Sigma June 19, 2008 at 15:14 #

    It’s nice to see (most) people agree that therapy or 1-on-1 teaching is beneficial. Anyone that practices shooting a basketball will get better, even if their skill level still lags. Some, however, will learn to be better than those naturally gifted through sheer determination.

    Regarding behavioral therapy, what does this really mean? It means the carrot and/or the stick. What people object to is the stick. Only a poorly trained professional relies on the stick. The good ones rely ONLY on the carrot. And I think the carrot is necessary for many kids on the spectrum. Heck, it is needed by most kids AND adults not on the spectrum. More importantly, step-by-step instructions are beneficial because not everything is intuitive to ASD kids.

    Early in my child’s development, (at least some) ABA seemed to be necessary and speech therapy was almost worthless. Now, the opposite is true. In fact, I would say my child outgrew ABA in less than 10 months while speech therapy has become increasingly beneficial.

    In my opinion, the most important thing that a parent can do when they realize that their child has any significant developmental delay is to take action. While they should aggressively intervene, they should not intervene with aggressive (risky or unproven) actions. One-on-one intervention directed at the developmental delay is the best course of action. I would rather waste money trying than waste time not trying.

    Side note: I find it interesting that many of the “bio-med” vitamin/mineral supplements are being sold (over the counter) all over the world as brain functioning and/or mental alertness cures at $2-5 a pop.

  14. Leila June 19, 2008 at 16:59 #

    Farmwifetwo, of course nothing will work if you don’t have a good professional available. And parents should absolutely take the lead, however not all of them have the intelligence or talent to give their children all the help they need. My son is already reading. What he is lagging behind is on comprehension. He can read sentences perfectly but he still doesn’t know very well when to use “I”, “You”, He, etc, not to mention on, off, in, etc. He has a hard time focusing on things that are not his immediate interest, and that may make his learning in a classroom very hard.

    But thanks for the tips on resources like Edmark and the Magic School Bus, I’ll definitely look into those. : )

  15. HCN June 19, 2008 at 17:40 #

    Psst… Leila, Edmark is a system that was designed for teaching kids with hearing deficits, it is a sight reading program. It was in my kid’s preschool (which was next door to the deaf and hard of hearing program). But even better (since the reading program can be pricey, like at $200+ per level), is that before Edmark as an independent company went under due to bad management it branched out into to really good kid software. You might try “Bailey’s Bookhouse”, “Millie’s Mathhouse” and Thinking Things. My kids (learning disabled and “normal”) really enjoyed them (the youngest is 14, so it has been a while):
    http://www.amazon.com/exec/obidos/search-handle-url?%5Fencoding=UTF8&store-name=software&search-type=ss&index=software&field-brandtextbin=Edmark

    By the way, my second son had issues learning pronouns and certain “little” words (he turned out be a “late talker” who ended up normal, unlike my oldest who is still hard to understand). The SLP had me read him his favorate stories and include the “he”, “him” and such words as much as possible. We also found certain books like the Berenstein books like “Into the Night” which used and reinforced “under”, “over”, etc lots.

    Oh, as you may have noticed: each and every SLP by boys saw gave us homework!

  16. farmwifetwo June 19, 2008 at 18:21 #

    Leila – I have forgotten how old your son is but this is what we’ve been up to. My private SLP is working on those very same concepts and one of the best ways to work on “me, you”… is to play a game. “My turn, your turn”. I also correct him now every time he says his name in place of “Me, You” and have him repeat the phrase back to me.

    At school we took pictures of him doing an activity and he writes (Writing w/ Symbols) on the computer “I am….” after “discussing” the photo with his EA (para – in the US). They also use other children for “He, She, They” etc. These are worked on when the other children are doing their journalling.

    I also did that with the eldest is/was? hyperlexic but his speech was delayed – ie. come normally at a slower rate. So it came a lot quicker. His bro has communication difficulties it’s like that link btwn what he knows and what he can say has a few nasty kinks in it. It’s not broken but it’s not smooth either. He’s not hyperlexic… he figures things out, the other memorizes.

    Language takes time – speech and language are not the same links in the brain. Eldest is ending his Gr 3 year and he’s finally gotten there, abstract still gives him problems but we can muddle through those. Back in Gr 2, the SLP sent home PAGES of “Why” questions – “why is there a roof on the house”, kinds of questions. It’s just a lot of repetition, a good tutor helps with school work, some of those kid school work books you can buy at Walmart, I’ve been reading stories that are “fact” based but narrative (re: Charlotte Mason homeschooling), and we like “The Canadian Flyer” (Cdn version of the Magic Tree House books), Anne Rockwell for children books. Level readers also come in narrative non-fiction.

    And as MsClark mentioned, be careful in what you think he knows vs what he’s just repeating in that setting. If you cannot do the activity after the therapist has left using different materials… he didn’t learn the concept.

    Patience… it’ll come.

  17. Ms. Clark June 19, 2008 at 19:50 #

    Leila, I like your idea of using a book that teaches English as a second language. I don’t know if it would help, but it seems worth a try.

    I’d also try teaching the child a second language. There might be one that he or she would enjoy learning and would open up insights into language. I like Mandarin. 🙂 It has really simple rules for I and You, Me and Them, She and Hers, etc.

    I think it’s way better than English in the prononun dep’t.

    Sigma,

    Some of us who know about child development fear the use of the carrot as much as the stick.

    ABA is intrinsically wrong. It is designed to leave the child’s mind out of the picture since the no one can read another’s mind, it is a black box… so you can only measure external behavior and try to mold it via rewards and punishments.

    It’s a sick way of looking at a child’s needs in my opinion.

    Now Vygotsky had a way of teaching children that was not about rewards and punishments and gave the child and the adults around him/her credit for being humans with minds that could be reached, minds that had opinions and desires and minds that existed within a culture.

    We don’t need no stinking Skinner. With apologies to Skinner because I think he was autistic… check out his cranium… 🙂

    Research has shown that you can destroy a child’s desire to learn by rewarding the child for what he would have learned anyway out of natural desire to learn. And I hate the ABA “rewards” the saccharine, “GOOD BOY, BOBBY!!!” and “GOOD GIRL, SALLY!!!” garbage and the “Look at me and I’ll give you a piece of this cookie!!”

    No one ever used this reward garbage on my child, not to my knowledge anyway. If they did I’d have gotten quite cranky and might have hit them with the proverbial stick.

    I have a friend whose now adult child has CP. When that child was about 5 years old someone in her school was trying to get her to say certain words by rewarding her with an M&M for each attempt or something. My friend found out about it and said forcefully to the teacher, “My daughter is not a dog. She will learn because it is right to learn, not because you are rewarding her.”

    and, the happy ending is that the girl with CP is a woman with CP (and a mom) now and can speak (with a slight impediment) and doesn’t require a M&M for each word! :-/

  18. farmwifetwo June 19, 2008 at 20:06 #

    {My friend found out about it and said forcefully to the teacher, “My daughter is not a dog. She will learn because it is right to learn, not because you are rewarding her.”}

    ::Stands and cheers:: I think I had that same discussion with the ABA therapists. They turned my happy, social, hugs, kisses, social praise little boy into a miserable, rebellious child… of course it was the child’s fault, not theirs.

    When the SLP started after Xmas, it took about 3 visits before my little one would let me get up from the kitchen table – 18mths after the T’s were gone and he trusted no T’s in his house, still.

    One day in the middle of their game she tried to slip in therapy before he could take his turn. He simply got up and left the table, no meltdowns… I was making supper. She looked at me, I said “IBA (intensive behavioural intervention is what it’s called here) did that to him all the time”.

    She got him, brought him back and they sang the “clean up” song while she showed him she was putting the Therapy lesson away. Now that’s part of their routine. Work first for 15min, clean up, play for 15min.

    He shouldn’t be suspicious and untrusting at 6yrs old.

    S.

  19. Leila June 20, 2008 at 04:35 #

    Farmwife two, my son is 4 years, 9 months old. His pronunciation is really good but he has a hard time making up his whole sentences. He relies a lot on scripts, and on things he hears other people say, which is good but he needs to be more “creative”. Basically he can have some very short conversations with adults, but he has a very hard time talking to peers without prompts. Using play time and games to practice pronouns is one of our main strategies, but he gets it right one turn, and wrong on the other. It’s very difficult for him to understand. He’s even mixing up “he” with “I”. That’s why I wonder if using a book with some very basic explanations and pictures would be a good way for him to finally “get” what each pronoun refers to. I am not a native English speaker and I remember the books I had to study English in school were great for that. Too bad I don’t have them anymore.

    HCN, thanks for those extra tips!

    Ms Clark, I don’t hate ABA but I agree it shouldn’t be the only method available in most of the country. I wish there were therapists that worked using a mix of different styles. But they are all so inflexible, they’re either one or the other, none of which is enough by itself.

  20. farmwifetwo June 20, 2008 at 12:38 #

    Leila – my NVLD child started as Mild, non-verbal PDD at 2.5yrs old. At 3 we had one words starting. At 4, he would start a sentence/conversation, flip into echolalia/scripting, flip back into words. I would correct those sentences and he’d repeat them back to me. At 5 we had much shorter sentences and no echolalia. At 8.5yrs old the child NEVER shuts up… just like all other 8yr olds. The conversations tend to be child led, the topics can pop out of nowhere.. but it’s nothing I am going to lose sleep over.

    Time.. promise… the best thing I did for both of them is send them to speech camps. See if your local group of SLP’s is hosting one, ask at your autism office. There is small groups, large groups, 1:1… but it’s camp – 100% camp. Both of them loved it, little boys is going again for a week this summer. It takes a good month before the lessons learned at camp start to appear.

    He’s still little. Get that series on child development I mentioned above. I’ve been thinking my eldest is a year delayed and he’s not. Yes, he has troubles navigating the nuances of the playground, body language, personal space etc… but according to the book… he’s EIGHT. Right where he’s suppose to be. I’m very proud of him.

    S

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