A Divided Autism Community and the News It Colors

Posted by SugeyCE on January 2, 2010 under Standard | 2 Comments to Read

Are you tired of hearing about Autism Spectrum Disorders yet?  Well, get used to it, because more and more reports say that it is on the rise and without coming to terms with all the different reasons involved in the rise of the diagnosis among our kiddos and loved ones, ASD is in the news and our lives for a long time.

In an effort to give parents–old and new–trying to help decipher what Autism means for their family, I wanted to occasionally share news with our readers that might be helpful in understanding what new advances and approaches are being looked at.  For this particular blog entry, it seems fitting to explain the different camps within the autism movement first to get a good understanding of the articles that are out there.  Not all news is “truth” per se and often one’s bias frames the discussion and analysis that is utilized in the article (so does who pays your bill, but that is for another time).  Therefore, rather than just update you on events and news going on this week, I thought I would preface it with some of the ideologies surrounding the stories we have here.

The movement to understand and serve individuals affected by Autism spectrum disorders is really divided up into several camps with some crisscrossing one another.  For our own family, we are a hybrid of a few methodologies out there, which I may allude to below.  These main philosophies surrounding the movement are:

1. Autism Rights Movement (also known as the Neuro-Diversity and Anti-Cure Movement) is principally held by individuals called self-advocates who are primarily–though not exclusively–on the “higher-functioning” end of the spectrum often termed Asperger’s Syndrome.  Individuals who advocate this approach encourage society to look at Autism as just a different way of viewing the world and neither better or worse and certainly not something that needs to be “cured.” Typically individuals aligned with this belief state that Autism Spectrum Disorders are genetic in nature and that therapies that try to “change” them are harmful, detrimental to their true self and potentially dangerous.
2. Cure through ABA perspective consists of families, caregivers and some self-advocates that believe that through Applied Behavioral Analysis–implemented as early in childhood as possible through Early Intervention Services–an individual with Autism could be cured from the condition. Adherents to this belief can also be hybrids with other therapies listed below. In general though, it is believed that through Early Intervention therapy that focuses on the behaviors associated with autism and trying to control or modify them so as to make them more socially appropriate or acceptable.  ABA is considered the “typical” approach for dealing with a child with Autism because the diagnosis of the condition itself is defined along behavioral lines.  In order to receive a diagnosis of Autism, you must have demonstrated differences and delays in the areas of communication, social interaction and “a lack of flexibility in thinking and behavior.” (Quoted from First Steps in Intervention with Your Child with Autism by Phil Christie, Elizabeth Newson, Wendy Prevezer and Susie Chandler). Please note that the authors of this book are not proponents of ABA and are listed mainly for the quote listed above.
3. The Biomedical Approach which is a growing movement among families contends that some of the effects and symptoms associated with ASD can be treated or cured through biomedical approaches or interventions that are usually individualized for each person.  The approach typically has a 4 step process that includes 1. treating gastrointestinal issues that are found among many individuals on the spectrum, 2. special diets (Gluten/Casein Free, Specific Carbohydrate and Ketogenic Diets among others), 3. Detoxification  (children with autism have had high exposure to lead, mercury, arsenic and other heavy metals and this can intensify the severity of the child’s delays, and 4. Methyl B-12 shots (Methyl-B12 is known to significantly help with higher cognitive function such as speech and language development, focusing and attention, improved environmental awareness, and more willingness to engage socially.)
4. Socialization Therapies and Approaches such as Son-Rise and Floortime are now more accepted than ever thanks to studies showing that individuals on the spectrum–with their different way of viewing the world–have less activity around their mirror neurons (”monkey-see, monkey-do neurons) which allow children to typically watch a social interaction or learn how to speak etc… just by observing their day to day environment.  By not having the neurons fire the way they are typically supposed to, children would not be able to pick up on language or daily routines as readily as children for whom mirror neurons fire typically would.  Social therapies that focus on joining (interacting with a child’s main areas of interest and participating in their repetitive play and not changing or judging that behavior) and interactive play can actually aide an individual on the spectrum to increase the activity in this part of the brain and thus learn new skills and increase their socialization and interactive ability.

As mentioned, there is much room among most of these ideologies to, for example, believe that you can treat your child’s autism with biomedical and social therapy or ABA therapy all at once, and I would term these families as having a hybrid approach.  As I already stated above, our family does partake of a hybrid belief as we have a child severely affected by Autism who is mostly non-verbal who is starting to engage and partake of the world around him–quite happily I might add–thanks to biomedical and socialization therapy.

Autism, and especially the idea of “curing” autism, is a highly politicized topic because of some of the philosophical differences listed above and because there does not seem to be one well-known cause for the condition.   I think one of the worst things we can do as a society is to be so short-sighted as to believe that there could ever possibly be “ONE” cause.  Autism now affects 1 in 91 children in the US (1 in 110 according to the most recent CDC study) and 1 in 58 boys and is estimated to affect over 1 million children in this country alone! Like other conditions, is it not possible that every child/person who has the condition may have arrived at it through different means?  Would this not in essence mean that we are all correct…to a degree.  As I stated above, Autism is diagnosed–thanks to the handy-dandy DSM-IV–based on behavioral and communication deficits in an individual.  Thus people are being placed in a category not by clinical trails, DNA or genetic testing into a category, but simply assigned a label based on symptoms displayed by each child. Could you not then have a genetic condition that causes you to have delays in language, social interaction and repetitious and inflexible behavior?  Could you not also develop this because of a combination of genetic and environmental factors?  I digress, though, I suppose that is a topic for another time.  I think my main point there is simple, I think that marrying ourselves to one approach and one overarching cause for autism for 1 million children in 1 country alone bastardizes what we need to do to help our children and society do to better serve the people living with the condition.  Each person living with an ASD diagnosis is an individual and their way of arriving at it and their way of treating or not treating it can be completely different depending on what is going on with them internally.

When a parent speaks of “curing” or treating their child, it is not necessarily a desire to purge their child of individuality, curiosity, focus or creativity (all “good” things that can come from having a neuro-diverse mind) but to treat a child who is moderately or severely affected who may not be potty-trained, who is non-verbal, who is inconsolable because of intestinal issues or who has quite frankly a compromised immune system and displays metal toxicity.  I think there are great points each group makes about there way of looking at Autism, and I think each group also makes a lot of errors–the main among them, is viewing Autism as a 1 size fits all model for every child.  As a parent, I just ask that we all focus on our children and become happy and loving detectives of their every move to see what they react to and against and how we can better help them interpret their world. Binding ourselves to a specific way of addressing our child’s progress blinds us from looking at interventions that may in many ways really help them achieve things they may really want to achieve now or later on.

In this vain, I now want to give you some food for thought and share recent articles that deal with some of the discussion I listed above in one way or another.

1. Celebrate all Individuals on the Spectrum with Autism Sunday. http://www.bloggernews.net/123438.  On February, 14, 2010, let’s join our friends in the UK in praying for the well-being and safety of all our loved ones on the spectrum around the world.  In this excerpt from the article:

   The International Day of Prayer for Autism and Asperger’s Syndrome falls on 14th February. The Founders of Autism Sunday, parents and carers of a teenager with autism, Ivan and Charika Corea from the United Kingdom have urged campaigners around the world to use the occasion to campaign and lobby on the serious issues of autism and Asperger’s Syndrome.There are over 60 million people with autism around the world. Many suffer without proper public services. The current credit crunch and recession has devastated many families with autism and Asperger’s Syndrome around the world.

2. Texas releases a study stating that Hispanics in that state are less affected by Autism than other groups and claims that socio-economic disparity is not an apparent contributor: http://abcnews.go.com/Health/wireStory?id=9441843

   I think this article raises a lot of issues that do need to be considered. First, the article clearly contradicts studies just done in Arizona that showed the exact opposite finding (see previous blog post).  Does this mean than that the environment or perhaps diet for these children is different?  Are there differences among newly migrated Hispanics to the area versus Hispanics that have had roots in Texas their whole lives?  Could it be that the study is completely flawed and that socio-economic factors do in fact hold the key to the difference, because the group they are observing have less access to health care or are intervention?  As with many other articles in recent months and years, I think the study actually raises more questions than actually answers them.  I would love to hear from some friends in Texas about their perceptions about this article.

3. Three US Publications cite genetic study of Autism among top 2009 Articles: http://www.dnaindia.com/health/report_three-us-publications-release-top-medical-advances-in-2009_133000The largest-ever genetic study of autism spectrum disorders and a remarkable success for gene therapy in reversing inherited blindness have made it to the list of top scientific achievements in 2009, according to three US publications: Time magazine, Discover magazine and the journal Science. Both the studies were conducted at The Children’s Hospital of Philadelphia.

   Again, I am not an anti-genetic involvement parent, but I do know that for many of the families we work with there seems to be no genetic predisposition for autism and to add to the conundrum, for many of them that have twins, only 1 child seems to be affected at all while the other one is “typically” functioning or others have multiple children and only 1 of them is affected.  I think, as with most studies, that this is progress for–as stated–the 15% of individuals that the study estimates are affected in this specific way.  For the other 85%, we need to keep an open-mind and hope that our answers are out there as well.

4. Stop me if you’ve ever heard a parent already tell you this one before–”Toxic metals may influence autism severity!”  Well, apparently when it comes from an Environmental group or scientist it just has more weight than from the mouth of a parent who lives it 24-7, 365 days a week and watched their child lose certain skills like potty-training, language and social skills.  In a “No-Duh” moment, an article in Environmental Health News published by Environmental Health Sciences, states the obvious fact that metal toxicity can influence the severity of a child’s developmental delays. Well, better late than never guys!
   http://www.environmentalhealthnews.org/ehs/Members/mlamerrill/toxic-metals-may-influence-autism-severity

I hope all of you can get something from this blog and that you will use the information herein as it is useful for your own individual edification and your child’s individual needs.  As always, I appreciate all of you and am glad that as someone blessed to have many individuals on the spectrum to love that I can share this journey with all of you.

Happy 2010! May this be all of our best year yet!!!