Search the site...

Autism Spectrum Explained
  • Home
  • Introduction to Autism
    • Characteristics
    • Common Myths >
      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
    • What to Avoid
  • Advice for Parents
    • Visual Supports
    • Autism Treatments
    • Explaining Autism to Kids
    • A Mother's Story
    • My Sibling Perspective
    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
    • Late Diagnosis
  • More
    • How to Assess Claims
    • What Causes Autism?
    • Additional Resources
    • Site Info & Feedback >
      • About the Website
      • ASE FAQ
      • Survey
      • Contact Us
      • Make a Submission
  • Our Blog
    • On Self-Advocacy
    • Trouble with Changes
    • Smoothing Transitions
    • Autism Speaks
    • Vaccines
    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring
  • Home
  • Introduction to Autism
    • Characteristics
    • Common Myths >
      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
    • What to Avoid
  • Advice for Parents
    • Visual Supports
    • Autism Treatments
    • Explaining Autism to Kids
    • A Mother's Story
    • My Sibling Perspective
    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
    • Late Diagnosis
  • More
    • How to Assess Claims
    • What Causes Autism?
    • Additional Resources
    • Site Info & Feedback >
      • About the Website
      • ASE FAQ
      • Survey
      • Contact Us
      • Make a Submission
  • Our Blog
    • On Self-Advocacy
    • Trouble with Changes
    • Smoothing Transitions
    • Autism Speaks
    • Vaccines
    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring

What We Hold Sacred

10/13/2013

1 Comment

 
When I was younger, my father used to tell me, "Creigh, everyone has their own sacred cows." Being quite literal, I thought he was referring to actual cows for the longest time. Later I realized that he was referring to beliefs that people hold sacred and above reproach or question.* I hadn't even thought about that concept, much less the phrase, since then, until one day recently when I realized it perfectly describes discussions of autism. 

I have been so careful in this website trying to avoid discussing topics of controversy, except in the most cautiously impartial sense representing both sides - and not indicating which I supported. This should not be seen as indicative of my own beliefs about autism. Actually, I have quite strong beliefs on the almost all the controversial subjects of the autism world, including treatments, cures, causes, and more. Why did I attempt to filter all but the least controversial of those beliefs out of the website? Out of fear.

My fear is that as soon as I say something in contradiction of a belief someone holds sacred (and you basically can't express an opinion either way on a subject without doing so) they'll write off the entire website. To use vaccines as an example, no matter if I came out as pro vaccine or as anti vaccine, there's a whole group of people that I would risk alienating. Because as soon as you disagree with someone on one of those 'sacred' subjects, it's almost like metaphorical walls go up in another person, and all your other words are tainted by that one disagreement.

That is the peak of foolishness. We can all learn from each other when it comes to autism. Even someone who believed exposure to rainbows caused autism (to use an example I'm sure will offend no one) might still have great insight into sensory issues, or a great idea for managing meltdowns or navigating the school system.

I guess what I'm saying is, we shouldn't write off someone's ideas just because they say something different from what we believe.** Who knows - they might have a point. Moreover, even if they were wrong about that one concept, it doesn't mean that they don't have other things of value to say.

So please, don't write off everything I say just because I have different beliefs from you (and I most likely do). As people who care about those with autism, whether we personally are autistic or love someone who is, we should stand together, not apart.



*And still later I realized that was probably not a terribly politically correct idiom.

**Although you should definitely check the evidence before believing them.
1 Comment

Questions of Cause: Proceed with Caution

10/5/2013

0 Comments

 
As promised, here's the second half of my thoughts about discussions of a cause of autism. While in the first half I discussed my concerns about the actual scientific validity of the causes others propose, in this half we'll be talking about the social implications that discussions of a cause can have.

1. Parental Blame and Guilt
Over and over, proposed causes blame mothers for somehow causing their child's autism. My own mom struggled with guilt for a long time over whether something she did during her pregnancy caused my sister's Asperger's, a thought which plagues her even now that my sister's an adult.* 


Unfortunately, my mother also was one of many to have had the misfortune of experiencing the explicit blame for their child's autism very early on. When my sister was first diagnosed, the psychologist flat out told my mother that her lack of maternal warmth made my sister autistic. (Even ignoring the fact that this cause was debunked, I'd like to add here that my mother is one of the most loving and affectionate women I know.) My mother is the perfect example of the harm to parents that falsely proposed causes and blame can inflict.

2. Making Money off the Backs of Parents
It really bothers me when everything under the sun is supposedly linked to autism, and miracle 'cures' are offered as a way to fix autism overnight. I see it as snake oil peddlers taking advantage of parents with children on the spectrum. "Want to cure your child's autism?" they'll ask you. "Drink/eat/use this!" They wheedle with stories of other parents who've seen success, and it's pretty broadly implied that you're a 'bad parent' if you don't try (and therefore buy) anything and everything for your child. There is no cure for autism right now, but you wouldn't know it if you looked at the sort of sales going on online.

3. Publicity Seekers
Some people don't do it for the money, so much as the attention to their cause. After all, it's big news whenever something's linked to autism (free publicity!), and people don't seem to look too far checking to see if there is scientific (peer reviewed) evidence for different causes, so it's pretty easy to get away with linking autism to almost anything. So if a person thinks that X is bad and they want publicity for their cause, they might link it to autism in newsletters, websites, books (which also make loads of cash), etc.

4. First, Do No Harm
And speculating about the cause of autism without some serious evidence (I'd like at least two peer reviewed studies before I even started to speculate) can do a lot of harm, because supposed causes lead to actions, and actions based on false evidence can have bad result. There are consequences to every action, and so far all I've seen come of these speculations (on net) is pain. Children have even died because of this. That's not worth any amount of placebo effect.

Conclusion
I am not at all saying or trying to imply here that we shouldn't ever talk about the cause of autism, or try to find it. What I am saying is that we should do so carefully. So the next time you see or hear something about the cause of autism, proceed with caution. 





*She shouldn't worry - I told her, as my sister would, that even in the very unlikely event that something she did during her pregnancy contributed somehow (and I really stress how unlikely that would be - there are a lot of studies examining correlations, but you really can't ethically do any causal studies, and I don't know how many of those correlational studies are peer reviewed), my sister would ask her to do it all over again. My sister likes who she is, and has made it clear she wouldn't want to be any other way.
0 Comments

    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

    Top Posts

    On Self-Advocacy
    Difficulty with Changes 
    On Parental Guilt
    Transition Time!
    My Autism Speaks Story
    A Tale of Two Sensitivities
    Autism and Haircuts
    Cause of Autism
    Vaccines and Autism
    Happiness's Variations
    I Cannot Call Caley Cute
    The Power of Listening
    Her Autism is Worse
    On Preventing Bullying
    Autistic Parenthood
    Facing Discrimination
    Stimming's Function
    On Anxiety

    Categories

    All
    Acceptance
    Accommodations
    Awareness
    Caley's Posts
    Cause Of Autism
    Change
    Controversies
    Creigh's Updates
    Different Not Less
    Empathy
    Kindness
    Listening
    Meltdowns
    Myths
    Parenting
    Presume Competence
    Reader Q&A
    Science
    Self Advocacy
    Stigma / Discrimination
    Stimming
    Understanding
    Word Choice

    RSS Feed

    Blog Info

    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

    Archives

    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    February 2014
    November 2013
    October 2013
    August 2013

Powered by Create your own unique website with customizable templates.
Photos used under Creative Commons from madmiked, Jim Larrison, Purple Sherbet Photography