Sunday, January 24, 2010

Down Syndrome Awareness -- The Science of Learning in Children with Down Syndrome

I'm the first one to reassure parents that every child is different (despite sweeping diagnoses). Each child has their own unique areas of strength and weakness. Each their own learning style. I should know, right? I have identical twins with Down syndrome and they are all but identical when it comes to their strengths, weaknesses, interests, personalities and even learning style. BUT (because there's always a but), they do both have Down syndrome. And the very definition of a syndrome is a group of common characteristics typically found in those belonging to the "group". So, yes, it's true. There are similarities across people in the Down syndrome population.

Grouping people together by characteristics and then scientifically studying their behaviors, strengths, areas of weakness and reaction to various interventions as a group -- is one way to find effective treatments and methods for medical, physical, emotional and educational dilemmas that group faces. It's called research! Scientists may also choose to study an individual within the group and then apply their learnings to the group to see if their assumptions stick. It's all of this research -- years and years of proving over and over again that a particular solution is effective for the group, in general, and worth trying on the individual member of the group to solve whatever question the research was conducted to address -- that changes the way we treat those individuals going forward.

So, I turned to the research to prepare for my recent parent-requested (read: I requested) CPSE meeting to address my boys' lack of progress in the area of speech and academic achievement. And I came across a significant body of evidence discussing common learning deficits found in children with Down syndrome. I found research as early as 1983 explaining that around the age of 5, typically developing children naturally begin to use an internal rehearsal mechanism to acquire and store information in short term memory and then with additional rehearsal and organization to transfer that information into long term memory and, ultimately, into permanent knowledge. However, it was demonstrated that children with Down syndrome have a tendency to NOT automatically implement this rehearsal mechanism thereby having difficulty transferring and committing new information into their long term memory banks. By teaching the children how to rehearse new information externally, the researchers found that children with Down syndrome were able to acquire and retain (in long term memory) the information in question.

Rehearsal is exactly what it sounds like. It is the repetition of the information being presented over and over and over and over (and with children with Down syndrome... over and over and over again) until the child is able to recall it... Over and over again until it is learned and the information is available in short term memory. Then the continued external rehearsal and organization of the information into an understandable framework for the particular child facilitated the long term recall of said information. Simply put, repeating the information over and over again, was shown to help children with Down syndrome learn and commit the information to memory such that they would be able to accurately recall and understand the newly learned information. (My guys are excellent at repeating the lines of movies they've watched over and over again... and, ultimately, accurately explaining the movie's plot.)

Interestingly, the research shows that this same learning deficit -- the absence of internal rehearsal -- exists in other special needs populations. Specifically, children on the autistic spectrum also often fail to implement internal rehearsal and organization. Because of the increasingly high incidence of autism over the past 30 years, extensive research has been done on the learning styles of children with Autism Spectrum Disorder.

To address the absence of internal rehearsal, the Applied Behavioral Analysis (ABA) methodology of Discreet Trial Instruction (DTI) was successfully applied to assist children on the spectrum with acquiring information and transferring it from short term memory into long term memory. Discreet Trial Instruction involves high repetition of external cues coupled with consistent reward for a correct response. This is classic and rigid Behavior Modification where a stimulus --> response --> reward process has been shown to be highly effective in helping a child commit the new information to long term memory. Think Flashcards with external rewards (candy, stickers or hugs, even) for correct answers.

In truth, there's nothing extraordinarily new here except for its application to a particular group. The scientific application of these methods to children with Autism AND to children with Down syndrome via research studies proves -- did you HEAR that -- PROVES that ABA Therapies and DTI are successful methodologies for teaching children with Autism AND Down syndrome a breadth of skills including academic, behavioral, language, daily living and more. In short order, I had uncovered more than 9 research studies spanning 20 years confirming these findings over and over again... All pertaining specifically to children with Down syndrome.

The outstanding question in my mind is, why is the standard protocol for children with Autism to automatically receive up to 40 hours of ABA therapies a week.... But there no such protocol for children with Down syndrome when it's been shown to be effective for both populations?
I'm doing my part to change this! At that CPSE meeting I mentioned above, I fought and won ABA services (including DTI) for my children with Down syndrome. And during the application of these services, my children will be studied as research subjects to add to the body of evidence PROVING this is an effective methodology for teaching children with Down syndrome.

If your child with Down syndrome is having difficulty retaining the concepts being presented to him or her, try implementing ABA and Discreet Trial Instruction methodologies. School districts should be made to provide these services once you've shown, via lack of significant progress, that the existing teaching methodologies are not working for your child, then presenting the research showing that ABA therapies are an effective method for teaching children with Down syndrome. Doing so should gain you the services as it did for me.

Together, we can change the world... or at least effectively educate our children with Down syndrome so that they can live more independently and become productive members of society.


  1. Maggie - I am always amazed by the wealth of knowledge you are. Fantastic results for your boys and all your hard work.

  2. WoW Maggie, Great topic to blog about. I enjoyed reading this one so much I will be sharing it will all of my boys providers as proof of what we are doing with them works, as a reward to them for all their hard work :) This is a very interesting topic for me as my boys have a PDD diagnosis, but I often wonder how much is Autism and how much is Down Syndrome. I nonestly can't tell the two apart because I have never really known anything about either condition prior to my boys.

  3. An excellent post, indeed. I beat the same drum - of repetition for learning on my blog. I will be sharing this post with others, too.

    Encouraging others to see ABA and DTI methods in schools is worthy. The key is a successful trial before implementing a program that is difficult to remove. I do not think ABA is a method that fits the legal definition of the word 'therapy'. ABA is an educational method.

    Thanks again for this helpful and informative post. Barbara

  4. Hi. I love your blog. It never fails to make me think. Plus, those boys are adorable.
    To the point, I was trained and was part of a team in the 90's that implemented ABA using Lovas therapy which is essentially DTI. I worked with 2 seperate children both boys ages 3 and 4 for over 2 years each. Both made amazing leaps in skills, language and behavior. I can't recommend it enough. Congratulations to you for not only advocating for them but winning this round. I commend and admire you.

  5. Excellent information! I should have you come in as a guest lecturer!! You might have to travel! Thank you for the time you took to write this!

  6. I am SO glad you were able to get ABA for your kids!

  7. Maggie, You wouldn't happen to have links to the studies you mentioned? I would like to make the case for ABA for my son.