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Is An Autism Registry A Good Idea?

By Sierra Black |

Families in the Ottawa area have an unusual option when it comes to helping their autistic children relate to police: they can register their children with the police as part of a database that gives cops some insight into a child’s condition before the interaction starts.

This has some clear and basic advantages: the police know the child may not be able to respond to verbal cues, and may be easily triggered by the noise and light of sirens.

Families who register provide not only a photo and some basic biographical information like name and age, but also information about a child’s preferences and quirks. In one example, the family had let police know that their son loved hockey, and that information was used to defuse a potentially violent outburst.

Families see a variety of benefits to the system. Among them, they hope police will be able to find children more easily when they wander, a problem some autistic children have. The Globe and Mail writes:

Some family members sign up those in their care in the hope that if they wander from home and go missing they will be found more quickly, because police have a photo as well as information about their favourite places. In Ottawa, about 300 people are signed up, and organizers are considering expanding the registry to include people with other non-verbal conditions.

This sounds like an incredibly useful system for families with autistic children. It gives police important tools to work with those on the autism spectrum rather than against them.

Does it respect the privacy of autistic individuals, though? Parents are choosing to give their children’s sensitive medical information to the police to keep, and trusting it will be used only for good. What if the state winds up using that information to treat these children as suspects in crimes when they grow older, or to intervene in their care?

I like the idea of the database, and it’s advantages are obvious. I’d want to learn a whole lot more about how it safeguards privacy before signing a child up for it, though.

On the other hand, I don’t have a child on the autism spectrum. About 300 people are registered in the Ottawa database. That’s a lot of people who do see it as a valuable tool in helping them manage their child’s needs.

Do you have a child on the autism spectrum? Would you consider registering your kid with a law enforcement database?

Photo: 2010 Legal Observers

 

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About Sierra Black

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Sierra Black

Sierra Black lives, writes and raises her kids in the Boston area. She loves irreverence, hates housework and wants to be a writer and mom when she grows up. Read bio and latest posts → Read Sierra's latest posts →

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20 thoughts on “Is An Autism Registry A Good Idea?

  1. littlefrogs says:

    For some children, yes, this is a good idea.

    The non-verbal child.
    The runner.
    The aggressive child.

  2. joslyngray says:

    As the mom of a boy with an autistic spectrum disorder, I TOTALLY get the need for this, privacy be damned. We’re incredibly fortunate in that our son is verbal and (knock wood), not a runner. But I have friends whose kids are escape artists. As a parent, I would do absolutely anything that might even have a chance of helping keep my child safe.

  3. Rachel Laurin says:

    Absolutely a great idea!

  4. AmyRenee says:

    This service should be available to anyone with a medical condition that may pose a flight risk – it would be helpful for families caring for Alzheimers sufferers as well.

  5. MrsB says:

    We have something similar in our town, which I have signed my son with autism up to. I think it’s a great idea, as I don’t want my son to get hurt because he doesn’t immediately respond to a police officer (or respond in an appropriate fashion).

  6. goddess says:

    As long as participation is voluntary, and there is no penalty for not participating.

  7. Rochelle says:

    As someone who has worked one on one with autistic children I think this is a wonderful idea to have implemented all over the place (completely voluntary, of course). I think that it’s important that the ones who are suppose to “protect and serve” our communities be aware of the fact that these children/teens/adults often times do not respond appropriately or at all, so that they can better help these individuals and help keep them safe.

    I also, however, feel that this would be something that would benefit any individual who has communication problems and/or have a tendency to just wander off; such as, dementia and Alzheimer’s patients as an example. These groups of people are also prone to wandering off, becoming lost/disoriented, being unresponsive to questioning or simply don’t have a clue as to what is going on. Making the police aware of these circumstances definitely makes it easier for them to help these people get back to where they need to be. With the people who love them and care for them.

  8. Jen says:

    Two of my triplets are pretty severely autistic (one boy, one girl). My son has lived in a group home since he was 8, because of his aggression and self-injury. He’s also been a runner for most of his life.

    My son’s also very, very strong, especially when in the midst of a meltdown. And nonverbal. Right now it takes 3-4 staff to contain him when he’s having a meltdown- any guess what the first reaction of an officer would be if they found him in the midst of destroying a grocery store (his first destination when he runs, for the bulk food candy) and didn’t lie down when they asked him to? We’d be lucky if he was tasered, and not shot, because any officer who didn’t know about his condition would instantly assume that he was violent, or on drugs.

    Doing proactive work and education with the police is a necessity. As a parent, I have to make sure that if by some chance my children come into contact with police, the police are at least aware enough to call someone who knows what they’re doing. As a long-standing left-winger I’m not thrilled at giving so much information to any ‘agency’, but as a parent, it would be irresponsible not to.

    It’s a very fine line to walk between privacy and safety, but I think that safety has to trump everything else. It doesn’t do me much good to be safeguarding my son’s privacy if he’s dead.

  9. Heather says:

    I think this is a wonderful idea. We can’t expect police to know just by looking at a child/teen/adult that they are autistic, and therefore need to be handled differently than an average person. A friend of mine with autistic twins says one of the hardest parts for her is that autism doesn’t have distinctive physical characteristics (like, say, Downs Syndrome does). You can’t see it on the outside. By voluntarily registering autistic individuals and providing photos and information regarding their specific traits, we give the police a valuable tool that they can use to better do their jobs, and to better help those who are registered. I think the program being voluntary is also important, as it allows those who wish to keep the matter private to do so without penalty.

  10. Sanriobaby =^.^= says:

    I think this is a wonderful idea for parents to use if they want to. It would provide those parents w/that extra sense of security that thier child will be handled properly if they ever come in contact w/a police officer. I also think this should also be available for those who suffer from more severe types of mental illness too. Sadly, when they become adults and are not being properly supervised and medicated, they can get into all kinds of problems and there have been cases where the police unknowingly mishandled them or didn’t take quick action b/c they didn’t know they were mentally ill and a possible danger to themselves or others.

  11. Teri says:

    As a parent of a mother of an ASD child who is verbal and has attempted to run off several times, I feel his safety is more important than the privacy issue. I do understand the other side of it of ‘targeting’ these individuals later in life to crimes to be apprehensive, but how likely is that to occur and if the individual has a town/community/good neighbor policy to speak up against what they see and when they see others, maybe that would help in regards to an alabi? Not sure, but I do value my son’s life and appreciate the caring and compassion for law enforcement to do everything possible to help aid in the protection of these individuals.

  12. Teri says:

    As a parent of a mother of an ASD child who is verbal and has attempted to run off several times, I feel his safety is more important. I do understand the other side of it of ‘targeting’ these individuals later in life to crimes to be apprehensive, but how likely is that to occur and if the individual has a town/community/good neighbor policy to speak up against what they see and when they see others, maybe that would help in regards to an alabi? Not sure, but I do value my son’s life and appreciate the caring and compassion for law enforcement to do everything possible to help aid in the protection of these individuals.

  13. Dennisse says:

    My son is on the mild side of the spectrum but when he gets a meltdown he runs out of the house even if it is in the middle of the night. I think this database would save many lifes.

  14. Dennisse says:

    How can that be implemented in the US?

  15. KRG says:

    One is about to go “live” in the USA. It’s a PPP (so you can keep your registration ‘private’ until there’s a wandering incident, or opt to have the profile forwarded to local 911 PSAP and law enforcement agency). Stand by — announcement coming in the next few weeks!!!

  16. Abby Radliff says:

    Yes this idea is great!! R they thinking on doing this in other places?? Like say Wisconsin?? My daughter is starting to become verbal but very slowly n she likes to run away frm me at times so we could really benefit from this.

  17. valerie says:

    My son is one of these children and I would do this. It is worth it.

  18. Jessie says:

    THIS IS A GREAT IDEA!! My son will be 7 on Sat. and he is autistic and is a runner also non verbal. As much that he is improving on his verbal skills he can only tell us what he wants. I have done everything you can think of to my home including putting double key lock dead bolt (key lock on both sides of the door for one lock) and he still manages to get out of the house in the very early morning. The feeling of waking up in the morning and your child is missing and cant talk is like no other. This is one of the best thing that a parent with a child with autism that is a runner and in non verbal could do for their child.

  19. Amy says:

    Twelve years ago my son was diagnosed with autism. He was 2 years old and at that time 1:10,000 children in the US were diagnosed with autism. He was nonverbal, he was a “runner” and I managed to keep him within eyesight of myself or a person or persons I deemed responsible enough to care for his safety. He is now 15 and to my dismay 1:90 children in the US are now diagnosed with autism 1:75 boys. No one can give concrete reasoning for this increase, parents and professionals cannot put aside petty quibbling long enough to get reasonable and deserved answers for the causes much less tried and true therapies to help our children.

    I have lived through the era’s of the “Miracle autism cures” the THIS is the treatment that will reach your child. From the gluten/casein free diet, Secretin injections, hyperbaric chambers ,Dr. Lovaas Discrete Trial Therapy, TEACCH methodology , Dr. Greenspan’s Floortime, Facilitated communication, Rapid prompting method, Brain remapping, medications not yet (even now) FDA approved for our children such as anti psychotics ( Seroquel, Risperdal, Abilify, Geodon, Zyprexa) ADHD meds not FDA approved for autism ( Ritalin, Focalin, Concerta, Adderall, Dexadrine, Vyvanse )not to leave out the benzodiazepines ( xanax, klonopin, lexapro, prozac, ativan etc.) or the alzheimer’s medication Namenda said to be a miracle to wake up the frontal lobe part of our childrens brains.
    All of this information I had to weed through and hope that my choice to not guinea pig my child to a science who didn’t care about him or his safety individually, hoping that choice would save him from being one of the kids who died from seizures brought on by Secretin injections, from communicating like a robot, only being able to respond if asked a question ” the right way”, from developing tics from the countless mixtures of non FDA approved medication cocktails.
    Now in my lifetime I read of governments micro-chipping our children or placing them on a registry, information reminiscent of Hilters regime and Nazi ideology of keeping track of Jewish families before eventually wiping them out. As of now this registry and/ or mircochipping is merely a suggestion aimed at frighted and overwhelmed families, when does it become mandatory?

  20. Ohio Mom says:

    I think it’s an awesome idea.

    While both of my sons are on the spectrum, my younger son is the one who would benefit from this type of registry. He has anger issues and suffers from seizures. My great fear is that some day, he will be confronted by police and be unable to cooperate, and end up being tazered or worse, shot.

    He USUALLY complies with police on the occasions we have needed intervention for family safety, but some day we may not be so lucky.

    Personally, I believe Amy is WAY over reacting. Weigh the benefits against the negatives. If it saves your child’s life, would it have been worth it? It would for me.

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