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Autism Organizations: Which Ones Do You Trust?

  • Posted on July 30, 2012 at 8:00 AM

There are many autism organizations out there—from ASAN to Autism Speaks and all sorts of organizations in between and among them.

They all have their own agendas, their own missions, their own purposes. They each behave differently, though there are similarities. Their memberships are different, though there are similarities.

Which ones do you trust and why?

Up until now I’ve steered clear of joining any organizations, because there are often legitimate voices criticizing each one. I did my stint in politics before my children’s diagnoses and my experiences destroyed my faith in the integrity of political organizations. It is far too easy for political organizations to lose sight of their original agendas, to play lip service to those agendas, while directing the efforts of the organization into some expedient side-road. And that’s for those organizations with legitimate goals in the first place.

I’m not sure I’ll ever go back on that decision. But membership—that commitment—isn’t the only form of participation. Still, it’s difficult to know which organizations are worthy of becoming an ally and which organizations are too vested in their own self interest that they act at the expense of the causes they proclaim to support, the causes that are their public reason for existence.

So, which autism organizations do you support and why? How do you show that support?

What Can We Do?

  • Posted on February 17, 2012 at 8:00 AM

On January 31, the Autism Society of America and the Autistic Self Advocacy Network issued a joint statement condemning the proposed changes to the autism spectrum disorder diagnosis in the DSM-V.  Along with this united statement, I’ve read articles, posts, and other statements that have convincingly implied (or stated outright) that the proposed changes are motivated by politics, not science.

I’m not going to rehash these arguments in an effort to try to convince those who support the proposed changes not to do so; nor am I going to try to convince those who are undecided to stand against these politically-motivated changes.  Plenty of people are doing that already.

What I would like to do is act.  Unfortunately, I’m not sure what can be done.  So, instead, I’m going to ask:

What can we do about it?

Wandering: A Warning

  • Posted on March 18, 2011 at 4:10 PM

ASAN has issued a warning and a call for action.  You can read a brief overview here if you did not get the message.

ASAN has many valid concerns and complaints about this proposal.  Generalizing any behavioral pattern based on poor research is unwise and irresponsible.  From a social justice perspective, attributing a diagnosis to a group of people for whom the diagnosis is accurate to an unknown percentage of the population is an act of stereotyping, which further demeans a minority group and raises serious doubts about the integrity of the medical community.  Furthermore, “wandering” as a medical diagnosis seems questionable in and of itself.

However, as a parent of three children who have exhibited wandering behaviors, I must also object with the language ASAN used to motivate their supporters.  First and foremost, I think it is inaccurate to assume this diagnosis will “encourage” schools to use restraints and isolation.  These activities do occur and they are dangerous.  They should be stopped.  But they are used by unethical schools and staff for the sake of their own convenience; a diagnosis will not justify the use of these methods to otherwise ethical and caring individuals.  Wandering is a safety risk and schools have a responsibility to address that risk and accommodate children who wander.  All three of my boys have wandered at one point or another, and their schools have addressed those risks and found ways to accommodate them, not with restraints or seclusion, but by ensuring their safety and giving them appropriate opportunities to explore their environments.  Parents and schools share responsibility for formulating an adequate and appropriate plan to address these concerns in a child’s IEP.  I also object to the suggestion that wandering is a reaction to “abusive or sensorily overwhelming environments.”  While this can be the case, wandering is a behavior with many causes.  All the wandering I’ve seen associated with autism has been about curiosity and lack of danger awareness.  Children are curious.  Those who lack danger awareness may seek to satisfy their curiosity in unsafe ways, including wandering.  Associating wandering with abuse is far too reminiscent of the “refrigerator mother” theory and other ways that have been used to suggest poor parenting as the culprit for complex behaviors.  Such a generalization can be just as dangerous as the one ASAN seeks to prevent.

It can take less than 30 seconds for a potential wanderer to get out and away from an unsecure environment.  Hyper-vigilance does not equal safety in such an environment.  Measures need to be taken, but they need to be taken in a respectful manner, i.e. not relying on restraints and seclusion.  Attention should also be paid to the environment itself.  If the environment is uncomfortable, then corrections should be made to that environment.  But caregivers must also be aware of other factors, like curiosity and limited awareness of dangers, when addressing safety concerns for a child who wanders.

Wandering is a real problem, and it can be terrifying.  Some children who wander go missing for days before he or she is found, if he or she is ever found or found alive.  That’s terrifying and harmful for everyone involved.  Even if a child is missing for only a few hours or even a few minutes, it’s terrifying.  Yet it serves no good purpose to turn this challenge into a stereotype.  It’s an individual issue and the solutions are individual and specific.  It is irresponsible for the Centers for Disease Control and Prevention (CDC) to attempt to make wandering—a behavior attributable to many factors—a medical diagnosis.  It is irresponsible for schools and other organizations to use such a diagnosis to justify harmful practices.  It is also irresponsible of ASAN to attempt to motivate their supporters by noting possible worst-case scenarios from a social justice perspective without also noting that there are real concerns about the safety of some individuals with autism.