An Autism Registry?

While perusing my usual Facebook stream, I came across an article about two brothers on the spectrum who created an autism registry and are working to make it live in their state with the aim of helping law enforcement understand when a person they need to speak with has autism.

While I applaud the ingenuity and self-advocacy of the brothers, and understand the intent, this still strikes me as the wrong way to go. Unfortunately, many law enforcement personnel in this country do not yet have CIT training (crisis intervention training), which is the basic understanding that people they deal with may have mental health or neurological issues, and need to be approached in a different fashion. It’s a very real problem with those on the spectrum ending up arrested for refusing to identify themselves or lashing out at officers. This was a major reason we spoke with the sheriff’s department ourselves when the MHP owner reported The Boy to them for things he did not do. The Boy got to see the inside of the Chief Deputy’s vehicle and now he knows him by name and sight, and the Chief Deputy has a relationship with my child so if there ever is a situation, he will hopefully be seen as a person with special needs rather than a perp.

A registry has scary connotations, and possible unintended consequences. My child is not a danger to others, which is what most registries are used for. Registries are also used for public reference, like the sex offender registry. Will people be able to access this registry so that they can choose whether or not to purchase a home near a child with autism?

The premise of a registry is that the people on it are different and need to be classified. While I accept that those on the spectrum may not be neurotypical, they are now 1 in 68 of us – is that really so different?

And finally, I keep coming back to this question in my current battles with the schools. Would you do the same to a child with cerebral palsy? juvenile diabetes? Down’s Syndrome?

Rather than settle for a second-best precaution, I think we need to spend more time and effort on getting all law enforcement officers CIT training. If the premise in education is that any intervention that helps a student with an IEP could help (and probably will help) children without one, shouldn’t that premise extend to law enforcement? That any intervention extended to a person with special needs would benefit a person without them? If we approach each other as people first, many of these issues would not exist.

So, no registry for us, thankyouverymuch. We will stick with building personal relationships within our community. You?

Advertisements

2 thoughts on “An Autism Registry?

  1. Actually, yes, yes you (can) do. Registries can serve to facilitate research and a bunch of them have made great strides — the Cystic Fibrosis Foundation, Williams Syndrome Foundation, the foundation for pretty much an rare ‘orphan’ disease you can think of (Tay-Sachs, Fanconi Anemia), etc.

    http://www.newyorker.com/magazine/2004/12/06/the-bell-curve

    (In no way, shape or form should anyone be COMPELLED to register, but it can be helpful. My entire family’s registered with the one for skin cancer and happily provide them with blood and skin samples. My mom died of it and my dad, me and one of my sisters all survived it).

    • Thank you for your perspective. This isn’t a foundation, however. Because this registry is primarily to alert law enforcement that a person is on the autism spectrum, I feel like it is a bandaid for a larger issue, which is CIT training that is desperately needed for law enforcement officers. I also feel like there are too many ways a database like this could be used for the wrong reasons. But thank you again for sharing your perspective!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s