Biomedical Trepidation

Most of you know that I am a biomedical skeptic.  Alanna is on a gluten-free diet but beyond that, we do not do much in the way of biomedical treatment.

All of that may change next week.  After our failure with clonidine my wife and I decided it is time to give in and go see a DAN doctor.  We feel that we have nothing to lose and possibly something to gain.  After all, the gluten free diet did help with gastrointestinal problems, so perhaps Alanna is sensitive to diet.

I am hopeful because there is some research out there proving some of these therapies can be helpful, but also nervous because of the potential for harm.  However, we have ABA therapy and speech therapy well established now, so any additional huge leaps in progress we would have to attribute to biomedical intervention.

In general I would describe Alanna as generally happy, but sleep deprived and on many days, just "unwell".  She is often lethargic and spacey and I don't know why.  Sometimes she cries for no discernable reason.  I have to wonder if she just feels ill... sort of like I feel when I don't exercise and eat crap for three days straight.

Maybe it will help, maybe it won't.  But before we pump her full of more drugs, we feel we ought to at least investigate it.

My Autism Heroes: Dr. Ivar Lovaas and Dr. Stanley Greenspan

I thought it appropriate to group these two "autism heroes" together.  This year (2010) has not been kind to great scientists in the field of autism.  Dr. Greenspan passed away earlier this year, and Dr. Ivar Lovaas, just last week.

Dr. Greenspan (top) was the leading figure behind the DIR model and Floortime, a popular intervention for autism.  While I do not subscribe to everything Floortime, there are a lot of ideas Dr. Greenspan has published that complement and enhance ABA therapy.  What I like about Floortime is the simplicity.  You don't pay to understand Floortime, much like you don't pay to understand ABA.  For this reason, if people are turned off by ABA I usually point them to Floortime over RDI.

Dr. Lovaas (bottom) was the individual responsible for bringing ABA into therapeutic use for people with autism.  Without him, we would not have the interventions we do today.  Thanks to him, there is hope for my daughter where so many years ago she would have been institutionalized with no hope for a future in this life.

I thank both gentleman from the bottom of my heart.  You both will be greatly missed.

The Power of Play

We have been spending a lot of time lately in therapy (and trying to reinforce/generalize when we have time with Alanna) developing Alanna's play skills.  Play skills are the basis for many other interventions in autism, including Floortime (especially the PLAY project).  Now that Alanna is starting to gain some play skills, we can use these opportunities to develop social communication, eye contact and joint attention. Alanna can also begin to play independently in a functional/imaginative way.  As she masters playing with different toys, she can then play with them in her playroom downstairs and keep "busy" while we do chores in a way that's functional.  

Alanna can:

• String beads like no-one's business.
• Do a variety of puzzles; as she learns new puzzles she is doing harder ones.
• Make pictures with shapes.
• Build towers with blocks.
• Play with a Mr. Potato Head and put the pieces in random places to make a fun head.
• Complete shape sorters.
• Feed her little baby, wipe her face, give her a soother.
• Cut a piece of pretend birthday cake, put it on a plate, blow out the candles, and decorate it.
• Pour herself some tea, drink the tea, put some bread on a plate, butter it (and she will sometimes say "ahm-nom-nom" when she pretends to eat). 

When Alanna is doing pretend play, she doesn't do it long because she is not able to think of too many novel actions yet.  But she will pretend without any prompts for several actions, and if you were an outsider she would look like a little girl playing with her tea set, for example. 

I have often wondered if teaching pretend play in this way is effective because I wonder if Alanna "gets" what she is doing.  But then I remember that young children engage in pretend play by imitating what their parents do, and that is how Alanna learned too.  Also, I see she generalizes, which tells me she gets it.  For example, she might pretend to eat something else other than bread, so I know she gets that plastic food is something you pretend to eat.  She feeds her baby but also feeds her bear and even her brother!

Play is an important part of intervention and I am glad we have put some focus on it!

A Tale of Two Therapies

Okay, okay.  This picture is a little on the gross side.  But it's relevant to the theme of this post, so bear with me.

You can divide most autism therapies into two camps:  those that are done mostly by parents, and those that are not.  Some therapies lend themselves to either direction and indeed some research has been done in the ABA camp to see how allowing parents to run ABA affects outcomes.

In the "do it yourself" camp there is Floortime/PLAY, RDI, More Than Words, and biomedical options.  ABA can be done this way as well and many people do it.

In the "leave it to the therapists" camp there is ABA, standard speech therapy and occupational therapy.

Most of the "do it yourself" therapies involve therapists setting up programs, monitoring it and providing feedback to the parents.  But the parents do the bulk of the work, because after all, the parents are the ones with the children the most - at least, that is generally the way this approach is marketed.

There are definite positives to this approach:
1.  Training and supporting parents is much cheaper to governments who are expected to provide intervention for autism.

2.  Involving parents to this degree encourages them to accept accountability on how the intervention is working.

3.  Parents who are well trained are better suited to continue to teach their children long after the early intervention period.

But there are problems with it too:
1.  While we'd like to think most parents are the best teachers for their kids, some parents just aren't.  They are not going to do as good a job as a trained therapist.  They may lack the intelligence, or lack the time or energy to do a good job.  Full disclaimer:  I have done ABA with Alanna and after two hours with her my brain is fried.  I do not think a parent could realistically do this intensively and properly without help but that is just my opinion.

2.  Some parents need to work.  Many parents work but do not need to do so (I'm not talking about your neighbours who work to pay for the SUVs they got last month), but some, including single parents, do not have a choice.  In this case, the child is not going to properly receive intervention from a program training the parent because the parent may only see them in the evenings and on weekends.

3.  As a parent it is very easy to be lazy.  Add to that the pressure of turning every activity into something therapeutic and you have a stressed out parent.  I do try to incorporate all the principles of ABA and More Than Words into my interactions with Alanna, but it's nice that the "pressure it off" me because I know her intensive teaching time is taken care of.

4.  Some parents have multiple children.  It is difficult to provide the intensity of interaction with an autistic child when you have another, let alone three or more children!  Any time your child is spending off in their own world is wasted, and sometimes you have to let them do that if you have more than one child.

By the way, I should also note I'm not partial to the idea of universal government-funding for daycare (I am okay providing it for those who really need it).  Some people believe parents are idiots and the state should raise children.  I am not suggesting that at all.  We strongly believe in having a parent at home for kids and neither of ours go to child care.  However, I do think there is a case to be made for a balanced approach - one where therapists and parents are heavily involved in their child's intervention.

What's your take?

OK, Now I Get RDI

I posted this article quite some time ago.  It was a pretty active post, with over 64 comments.  The gist of my post was that RDI was difficult to understand clearly without paying big bucks to have someone explain it to you.


Well, someone recently provided me a copy of one of Gutstein's earlier books, Relationship Development Intervention with Young Children.  Inside I was surprised to find not pages and pages of theory and anecdotes, but activities and exercises explaining how to move through the RDI stages.  Finally, something practical for me to look at without words like "dance" or "redo".  The activities are clearly laid out with goals that make sense.


What I've found so far is that RDI appears (at the early stages at least) to be a lot like speech therapy.  Some of the early activities focus on changing how you communicate with your child, getting the child to pay attention, and sharing enjoyment with activities.  A good speech program is Hanen's More Than Words, which has a lot of similarities with these RDI activities.  I like what I have read so far - these activities are practical and will help develop the skills I think they claim to develop.


One interesting thing to note is that my suspicion about needing some ABA to get started is probably true.  I often wondered what RDI proponents would suggest for a child who completely ignores the world around them.  Here's an interesting excerpt from the book I am borrowing:

A small group of children with autism appear oblivious to these methods.  They may monitor their communication environment so poorly that they do not even notice your highly emphasized, indirect prompts.  These children require an initial behaviour modification approach where they initially learn to respond to direct prompts (emphasis mine).

In other words, some children need some ABA to get started before one can even start these RDI activities.  Now that makes sense to me.  As Alanna has gained skills in communication and attention our ability to do these kinds of activities is increasing.


Lastly (and I expect to be flamed for this), Gutstein has claimed the reason he stopped publishing these activities was because the ABA crowd was de-constructing them and making them into behavioural programs.  I think he has a valid point, but I also think the primary motivating factor was to make his method proprietary and "license" it to franchisees, namely the RDI Consultants.  I am sure Dr. Gutstein has done well financially after making this decision.  I suppose I can't really fault him for this, but I wish he was more interested in helping parents of children with autism rather than making money.

Selling Hope

This is a jewelled box.  A famous myth in the ancient Greek world surrounded a woman named "Pandora" who had such a box.  The "box" was said to hold all of the evils we experience in the world:  falsehood, cowardice, avarice, cruelty, etc.  Depending on how the story goes, Pandora either releases "hope" as well, or she prevents the opposite evil, "foreboding" from leaving the box.  Hope is an essential feature of the human experience; without it, we would all become depressed and give up, knowing our fate in every situation, knowing every outcome.  Hope is also a huge business in this world, beyond a measurable dollar figure.  Sometimes people are so desperate for hope, this are willing to buy it even when deep down they know it may just be smoke and mirrors.  Barack Obama sold hope very successfully in his campaign to be the American president.  I'm making no comments about whether or not Obama's hope was real or not, but I have some American friends who did tell me they felt "hopeful" about their country when he was elected.  Obviously he sold his message well.

The definition of hope, according to dictionary.com is:

"The feeling that what is wanted can be had or that events will turn out for the best".

People want to be hopeful - in fact, they are desperate to be hopeful.  Some would argue religion sells hope.  Many quack medical professionals sell hope.  Thousands of products and services are sold everyday to provide hope to people wanting to overcome everything from a balding hairline to a low sex drive.


Autism, having no cure, has many treatments available with all of them claiming to work.  As a parent, wading through this list is overwhelming.  People are willing to overlook reason and research in the name of hope... and I am definitely not immune to this and admit I do it all the time.
Here is a list of current autism therapies (this is not exhaustive and not all of these are complete therapies, but some may rather look at a particular portion of the disorder):


Applied Behavioural Analysis - Lovaas
Applied Behavioural Analysis - Verbal Behaviour
Pivotal Response Training
Early Start Denver Model
Relationship-Development Intervention
DIR Floortime
SCERTS
Solomon Play Model
Sign Language
Picture Exchange Communication System (PECS)
Sonrise
Miller Method
TEAACH
Hanen More Than Words
Gluten-Free Casein-Free Diet / Heavy Metal Poisoning
Biomedical Approaches / DAN protocol

(Feel free to add to this list).

How do you as a parent know what's the best option for your child?  First I would examine the studies done to see where the evidence lies for treatments.  Are the treatments verified independently in studies by people other than those selling it?  If not, be cautious, but don't necessarily run away.  If a treatment is neither proven or disproven, it may work.  If you are a regular reader of this blog you know I am primarily an ABA proponent but I also see great promise in some other therapies.  I would also recommend Hanen's program.

In the end, if one treatment does not work, you will inevitably try another.  I understand this, but be careful you are not buying hope instead of help.  Perhaps for some this makes little difference in the end... but I caution you anyway.  Autism is big business, a huge industry.  They are all selling hope.

I Don't Get RDI

This is the RDI Book, written by Dr. Steven Gutstein.  He is the founder of Relationship-Development Intervention, or RDI (pretend the registered trademark is beside each mention of RDI).  RDI is a relationship/education type of intervention for autism, similar but in many ways different to DIR/Floortime (insert registered trademark here).  Floortime was incidentally the first intervention we researched.  RDI came next, then ABA.  We contacted a very agreeable RDI consultant out in the Greater Toronto Area who was pretty helpful in lending us the book and the video that introduces RDI.  Unfortunately for us, we never understood it.  Both the book and the video are long on theory and short on practical examples.

From the website rdiconnect.com:

"Families under the guidance of a certified consultant slowly and carefully construct opportunities for their child’s neural growth while adding complexity. Over time, parents create a formidable impact on their child’s ability to form reciprocal friendships, mature emotional relationships, conduct successful collaborations, engage in flexible/adaptive thought and master problem-solving abilities necessary for job attainment and success in the 21st century world."

This sounds fantastic.  But no where in the book or the video, or anywhere I can think of do I see how.  I expected to see a list of activities targeting specific milestones or goals, with the ability to take data, but there is nothing like that available in the literature.  To get more, one must sign up with a consultant (at a cost of $6000 or more) to gain access to the on-line tools and education.

To date, no one who has done RDI can explain it to me without using buzzwords like "guided participation", "guide", "dynamic thought" and other nebulous terms that do not have context.  I remember watching the video and seeing a mother work with her son on anticipating a fun activity (this concept I get), but I had to wonder how she even got her son to sit down and pay attention to her... did this child just know this, or did they skip an RDI step and not show us, or did they do ABA first to get some basic skills before trying RDI?  It's not clear.

When I explained the "lack of practical steps" to the RDI consultant, they explained you can't have steps because every child is different.  Yes, every child is different, but you still need basic steps with variations.  Are we saying we teach every person how to drive a car that much differently?  Not really.  There are variations certainly on what works for younger people, older people, nervous people, people with disabilities, etc., but to say there are "no documented steps" to me translated to "we make it up as we go along".  Teachers in the classroom have lesson plans.  They adapt it yes, but they don't go fly by the seat of their pants.  They have goals and they measure progress.

The promise of RDI is great.  I just don't understand it.  I know many people like it, but I can't justify paying so much money just to understand a therapy.  Can anyone explain it in practical terms?