Wednesday, March 16, 2011

ASAN Puts Ideology Ahead of Children's Safety

The "Autistic Self Advocacy Network", aka ASAN, is putting its ideological goals ahead of the safety of people with autism by opposing the CDC's efforts to address the issue of wandering in autism.  You wouldn't think that an organization whose stated purpose is to advocate for the needs of people with autism would be opposed to addressing a safety issue, but here we are.

Here's the deal.  The CDC recently proposed adding a medical diagnostic code for wandering in children and adults with autism, developmental disabilities, and other conditions such as Alzheimer’s.  The CDC wants to use the for the following purposes -
Diagnostic codes for wandering associated with ASDs and wandering associated with other developmental disabilities would promote (1) better data collection for and understanding of this behavior (2) prompt important safety discussions between healthcare providers, caregivers, and the person with the disability to the full extent possible. Better data should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand the wandering and develop proper emergency protocols and response while supporting self-determination principles.
As many parents whose children have autism can tell you, wandering is one of the many safety concerns that they have to worry about.  Some children with autism can and will wander away from home or other safe environments without any regard to the consequences.  They will get lost in the woods, drown in pools, walk straight into traffic, or do other things that will put their lives at risk.  They will do these things without any understanding that these things are dangerous because they are not aware of their environment.

While there is not yet any hard data on how often wandering happens, there are plenty of stories of children with autism who wander away from home and die.  I believe there is an urgent need to get a handle on this problem and to get the programs in place to help prevent needless deaths.

You would thing that ASAN would be all for preventing needless deaths but you would be wrong.  ASAN put out an "Action Alert" two days ago telling the world that they are against addressing the problem of wandering.  However, rather than directly address the issues of wandering, ASAN is trying to re-frame the debate into nonsense terms.

Instead of children wandering away because they don't realize the dangers, ASAN is claiming that children use wandering as a communication tool to avoid "abusive or sensorily overwhelming environments" -
By labeling hundreds of thousands of school children with disabilities with a diagnosis of "wandering", CDC will encourage districts to plan for the use of restraint for these students in Individualized Education Plans (IEPs) and school safety planning. Furthermore, by claiming that "wandering" is an unavoidable medical diagnosis instead of a behavioral response to specific circumstances, children with little to no communication needs may lose one of their last ways of making family members and educators aware of abusive or sensorily overwhelming environments: trying to leave a dangerous situation. Far from making children with disabilities safer, this proposal will enable abuse "in the name of treatment" and make it harder for non-speaking students to communicate problems to their families. 
Yes, I can see that identifying a very serious problem like wandering and putting a plan into place to keep children from harm will stop them from communicating.  How exactly does that work?

ASAN also claims that this label will "enable abuse and restrict the civil rights" of people with disabilities.  Or that the label might be used to enable "insurance coverage for tracking devices".  I mean being able to track children who have wandered away from home and find them before something happens would be terrible.

Here's a hint ASAN, if you have an abusive parent, caretaker, or educator, they aren't going to be stopped by the lack of a label.  But a label has the potential to give us real data about how serious the wandering issue is and help prevent needless deaths.

If you ever needed a good example of why ASAN does not speak for the needs of children with autism, this is it.  Go read the entirety of why ASAN doesn't seem to care about children's safety.  Or better yet, support organizations like AWAARE that are working to prevent wandering incidents and deaths.


  1. Excellent post. Ari Ne'eman and ASAN are a disgrace and president Obama is a disgrace for appointing Ne'eman to the National Council on Disabilities. They are just a bunch of hate mongers and fear mongers who have no scruples whatsoever.

  2. I just don't see how identifying a safety concern endangers civil liberties...ASAN does not speak for the entire autistic population (no more than I do!) and keeping wandering non-communicative children safe should be a concern of theirs... we put deadbolts at the top of all our exterior doors as our son was a wanderer... his 'bolting' was not from sensory overload or abuse -- he liked to throw rocks and touch leaves and would have walked across a four lane highway in rush hour to do it. In the last year we have had two cases in my area where children wandered away from their homes -- only one child survived. This was one of my biggest fears and I believe I shared this fear with countless other parents who worried about their children on field trips, on the school play ground, at the bus stop and so on where someone else may have not paid as close attention to their child slipping away. ASAN cannot put themselves in these children's shoes -- and it's not because their own autism prevents them from utilizing theory of mind -- as they speak solely for high functioning people. Thanks for this post!

  3. It really is a shame that something as dangerous as wandering requires the PROFESSIONALS’ acknowledgement and legitimization to justify a coherent response. Contrary to ASAN's spin, this has nothing to do with diagnosis – people with dementia, TBIs, Alzheimers…
    but, hey, the ASD label is a cash cow, so the pro’s milk it...

    It is absolutely appalling that Ari N. and fellows are characterizing this as undercutting their rights and respect. These people do not have anything to do with Autism as I know it. They’re verbal – they can talk. They convey that their “feelings” get hurt, that others will have a “bad impression” and that they have a group identity – sense of self, constructing future abstract social implications, and -dare I say it? altruism – none of these attributes square with what I have read over the years, or with what I have personally experienced. The ONLY aspect of autism portrayed is evidenced by the lack of respect for human life and safety – that’s consistent with the anomie attendent to autism. Finally, catch this: children are a whole different legal entity from adults: the ASAN crowd. Those formerly known as high functioning have nothing to fear – unless there’s a legal finding of incapacity this will have nothing to do with them.