Monday, February 22, 2010

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 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
Solomon Play Model
Sign Language
Picture Exchange Communication System (PECS)
Miller Method
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.


  1. I completely agree with you, there are many who prey on a parents hope that their child will recover from autism and lead a "normal" life. And as a parent you are willing to do almost anything to ensure your child's future. Its so hard to weed out the fact from the fiction. What's even more difficult is because autism is a spectrum disorder what therapy worked for one child may not be successful for another. Added to this there are so many questions as to what causes autism its hard to know how to treat it without knowing the root cause.

    I have a biology degree and put great stock in scientific studies and research. However as a mother I also put great stock into mother's intuition. I knew B12 injections would help Tristan, there was no scientific studies, just lots of anecdotal evidence. But something in me knew it was right for Tristan and it was, after his second shot he started talking.

    With treatments that haven't been "proven" in the realms of science you have to educate yourself and decide if the treatment makes sense for your child.

    Scientific studies cost lots of money to conduct and I'm not willing to wait for the scientific community to get up to speed. The treatment approach we take is not invasive and at the end of the day we're just giving him vitamins. Something like chelation therapy is not something I'm at all comfortable with although I know many have had success with.

    Its definitely buyer beware when it comes to treatments for autism.

  2. Yes, hope is essential on this journey of ours. Hope is being able to see the sunshine through the clouds. We all want to believe that things will get better. We have been careful though to put our stock in scientifically backed interventions.

    The first book I read post dx was "Let Me Hear Your Voice" by Catherine Maurice. This book gave me lots of hope. It provided hope at a time when I was terrified of autism. I couldn't even say the word. I prayed for a cure for my son and constantly googled anything I could find that would reference a cure.

    Now my hope is for something different. I no longer hope for "cure". I hope for recovery from the challenges that autism may bring.
    Our son has been primarily getting ABA and he has made huge progress. I can not say for certain that all of these developmental gains are a direct result of ABA. It could also be maturation and age or the speech therapy he also receives. Even if we don't know for certain why he is improving, we do know that the intervention he is getting can only help.

    A year ago, I would have never imagined that our son would be the boy he is today. We are confident that our son will make more progress and overcome most of his challenges.

  3. The problem is that the incidence rate of autism has skyrocketed since the early 1990s when my daughter's autism kicked in. At that time, hope did not exist! Every book I read was a bleak picture and all we could hope for was hanging onto our daughter as long as we could before we had no other choice but to institutionalize her! The only hopeful book we read was Temple Grandin's first one, and she was a fluke of autism nature.

    Today, we have the opposite problem: information overload. I have hope because my daughter is doing things I was told were impossible according to the neuroscience of the 1990s. I do not think she will ever be truly independent, but I do see her as being a loving, contributing companion to whomever invites her into their home after we can no longer care for her.

    What I suggest to people is to get off the autism roller-coaster by pinning your hope on a cure. What has kept me sane (besides God) is focusing on improving quality of life. If something we tries makes life a little easier and did not cause us to take a second mortgage on our house, then it was a win for us. If said treatment does not do a thing, that is a lesson learned and we put it behind us.

    I also try to talk to parents who saw success and did not see success. I try to figure out which children sound the most like my daughter and I first investigate ideas that match children who sound like her.

    I assess the symptoms that the particular treatment is trying to help. For example, when the big secretin thing came out in early 2000, I realized that Pamela's gut issues cleared up with a gf/cf diet and anti-yeast protocol. It did not make sense that a digestive system hormone would help her since her stools had normalized. I even emailed someone in the thick of this research, someone that I personally knew and trusted, with our situation and they agreed with our conclusion.

    Another thing parents can do is try to get educated and do things themselves, rather than wait for the funding or the professionals to arrive in your area. My daughter has aphasia and autism. We tried different things and nothing was really affective until the association method. I was living in Alaska, where there were no trained speech therapists, and I had to order the manual via interlibrary loan and it came all the way from Oregon! I read the manual about 100 times :-) before I understood it. It was worth it! The association method was the thing she needed to help her make progress in language.

    I have not updated Pamela's webpage in over two years because my blog keeps people current, but you can see all the things we have tried and what we saw. I guess one of these days I need to make a page on what I would do differently if I had the chance with all of this hindsight vision!

  4. having tried ABA, and supposedly having success with my older son ( later to find out like tammy was saying, not for quality of life but for skills)...when My younger son did not respond to ABA I had to look at emerging treatments ( evidence based BTW) The national standards report lists Denver start, RDI and Floortime as EVIDENCE based emerging treatments. Of course this was before I switched to RDI years ago, because it made alot more send to me then behavioral conditioning.
    I get that HOPE is a big business...and it well, really stinks that you have to wade through that to get to truth. Looking at theory...the WHY..made me realize that I did not just want to condition my child to act a certain way, to give me words with no meaning...but I wanted my boys to return to their developmental trajectory. OF course I think Science is important...but there are many factors to consider when we want to help our kids!