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?

The Classification of “Meltdown”

Rainbow pencil

Rainbow pencil (Photo credit: @Doug88888)

There is clearly a difference between a tantrum and a meltdown.  Tantrums are thrown for effect, while meltdowns are thrown because the ability to communicate something has evaporated, and tolerance levels have been exceeded in some way.  But I have noticed my own language lately, in describing behaviors as a “meltdown”, when they aren’t really.  With The Boy, I tend to classify all of the behaviors leading up to a meltdown as “having a meltdown”, so that others who do not have living-with experience with autism will understand.  Many, many times, we are able to avert the big blowout.  In fact, they have been fairly rare, at least in public.  But the behaviors beforehand are no picnic either, and require me to be firing on all engines, brain clicking along, coming up with solutions, ideas, and decisions at lightning speed, much like a battlefield medic.  It’s really a crisis for both of us.

Wouldn’t it be great if there was some universal way of describing this “ramping up” of anxiety pre-meltdown?  Wouldn’t it be great if that became part of the autism awareness and acceptance vernacular?  Like one of those smiley face charts at the doctor’s office that they use to help you decide how much pain you are in, so that you can describe it to them accurately?

“Boss, I’m going to be a few minutes late to work, we are at a level orange on the meltdown scale right now, and hope to have the situation back down to a yellow shortly.”

“Honey, I think we need to find our way to an exit.  This looks like a green heading into yellow territory.”

“Hello, Mrs. Vandenberg, I just wanted to let you know that we had a pretty rough morning, and got up to hot pink because his favorite shirt wasn’t out of the dryer in time for school.”

Of course, the application would probably vary from person to person, but it would provide a little more information than just, “he’s having a meltdown”.

What’s your opinion?  Let us know in the comments