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?

That's Not So Bad

When we first started Alanna's ABA therapy, we fretted over how much we might contribute.  It's expensive because of the sheer number of hours you spend teaching your child.  If you hire someone to do it, it costs big bucks.  This week, Tyler and Alanna became sick - Tyler especially so.  So three days later there hasn't been a therapist in the house.  For two of those days, Becca and I ran a 2 hour session each, getting through all programs.  It wasn't so bad - tough to do very well but manageable.  Alanna even moved up on some programs to new targets or "lessons".

We were warned when we started ABA that if a parent becomes too involved with the therapy the child will stop thinking of the parent as a parent and will start thinking of them as a teacher whom they have to please to get their desires and needs met.  But these roles are not so different, and we have found at least (so far) doing a session weekly each (about 20% of her total therapy hours) does not change our relationship with her at all.  If anything, it reminds us of the principles of ABA and allows us to apply them daily in her routines.

So this week sucked for the lack of sleep, runny noses, sneezing, vomiting and diarrhea... but did wonders for our confidence in running her ABA programming.  How bittersweet.

Mystical Diets

This is gluten.  It's an important part of wheat used in practically all processed and prepared food due to its uncanny ability to hold stuff together.  Unfortunately, some people have celiac disease, which makes them unable to consume gluten for fear of inflaming their small intestines and causing all sorts of problems.  Jenny McCarthy and others claim that a variant of this diet, the gluten-free / casein-free diet (GFCF), helps children with autism (casein is a protein found in dairy products).  Interestingly, Alanna's favourite foods are bread and cheese.  I have heard some people claim that children with autism crave these foods due to the "opiate" effect or "leaky gut" effect.  While research in this area is on-going, studies have shown that in double-blind trials the GFCF diet does not appear to impact behaviour in children with autism.

I am not particularly a fan of biomedical approaches to autism because I do not see any scientific proof that they work.  However, I recognize that sometimes things work for only a proportion of the population and it's impossible to know before one tries.  For example, melatonin, a naturally occurring chemical in the body, helps us fall asleep.  Most studies I have read indicate melatonin does not seem to help children with autism (or is inconclusive), but for Alanna, it helps tremendously.  She can sleep.  Before she was on it, she took over an hour to fall asleep and can now do so in minutes.

So, we are going to try to go gluten free with Alanna.  She is too in love with her cheese to eliminate casein, so we will start with gluten.  If this helps the autism, great.  But our main reason for doing so is to help her poor digestive tract.  She has smelly gritty diarrhea... I look at it and it's just not normal.  Perhaps Alanna has a co-morbid condition such as celiac disease (that is, the problem is not caused by autism but by something else she has in addition to autism).

So autism aside, there is something wrong down there, and the first thing to try is to eliminate some foods until we find out what it is.  We'll try gluten first and see if it helps.  If not, we'll try something else until we find out what it is.  If Alanna's digestive tract was fine, we'd probably not bother.  I'm not expecting changes in behaviour; I'm just hoping for normal elimination.  Poor girl.

My Autism Heroes: Mandy Mason

This is Mandy Mason.  She is one of my autism heroes.  Her daughter, Juliette, has severe regressive autism.  She put together a 40-hour per week intervention for Juliette, much of the work done herself.  Now she operates LEARN, an ABA-based intervention centre in Western Australia.  She set this up herself.  She taught her daughter, and then switched careers to run LEARN, which by all accounts appears to be very successful.  Juliette appears to be doing very well.  I first encountered her in the dark days when Becca and I first suspected Alanna has autism.  We didn't know recovery was possible (although rare).  Her video, showing all the progress Juliette has made, gave me so much hope for Alanna's future.

Juliette, I don't know you, but thank you for being an inspiration to parents, particularly those with girls who have autism.  It gives me hope - even though I know Alanna's future, no matter what it is, is secure.



An update on Juliette from Mandy:
Juliette is now 5, in a mainstream school, she is an absolute pleasure to have in our lives and we continue to work with her intensively. I don't know if she'll ever be able to live independently - her deficits are still very much affecting her ability to interact with the world. She talks non-stop, she loves her sister, she seeks us out constantly, she reads, writes, loves drawing and painting - lots of things I never knew whether she'd be able to do. None of it would have been possible without the use of the principles of ABA. My advice is not to think of ABA as a therapy - but as a set of guidelines to assist you to teach effectively. It does not impact on your ability to parent in the way you want to - it will just help you understand what you are doing better.

Bubble Obsessions

Finding a new reinforcer for your child with autism is like finding gold!  Yesterday we discovered bubbles are the bee's knees.  Alanna loves bubbles.  So much so that when she sees the bubbles PEC on her PEC board (a PEC is a picture she can exchange for something she wants) she immediately brings it.  We used this to get her to switch to a verbal request, and all day yesterday we heard "ba ba", "bubbles" and "gubbles".  She will now request without the PEC; she'll even bring you the bubble vial and dip the bubble wand in for you!  She knows she has to bring it to her mouth to blow but isn't quite sure how yet.

I love that she is talking and has converted a PEC into a very close verbal approximation in less than a day.  But now our world is "gubbles, gubbles, gubbles!!"  We have to hide them and distract her.  Good thing children with autism don't have fixations... not.

Overload

There are two types of parents in this world:  the ones that like to have as much information as possible and the ones who don't.  When I found out Alanna had autism, I researched as much as I could about everything having to do with autism.  This has served me well, to a point...

Once you have learned what you can and have setup an intervention program for your child, you can monitor it and keep participating in it, but there comes a point when you need to step back and catch your breath.  I feel like I've run a marathon over the last several months with no time for stopping.  But parents need rest too... and need to retain some semblence of their normal lives, activities and interests.  I've put those on the backburner too long and am not serving Alanna well be being her autism-a-holic information daddy.

To other parents in information overload... you need the information, keep getting it, keep analyzing it, keep filing it away.  But take a break; don't burn out.  You won't be effective to your kids this way, trust me.