Thursday, July 29, 2010

Autism Service Dogs

Sarah Oriel

In the Fall of 2003 my mother sent me an article from the Vancouver Sun newspaper. It was about an organization in Canada that was training dogs specifically for young, autistic, children. I was fascinated and excited -- Josh was 5 at the time and I had already been thinking about whether a dog could be of some help to him.

National Service Dogs in Canada (NSD) was responding to a need they discovered quite by accident. They had been in the business of training assistance dogs for adults with other types of disabilities.  Then they received a desperate plea from the mother of a young autistic boy, asking if they could train a dog to help her keep her son safe. This little boy was a "runner": he would get out of their house at all hours of the day or night, and take off while in dangerous places. His family was at a loss.

The NSD trainers weren’t sure what they could do, but after talking with the family in depth, came up with a training plan they thought might work. It involved the dog working with the child and an adult handler as a three member team. The child would be tethered to the dog using a special belt attachment and the adult would be the one managing the dog on a leash. They worked on this new system with the family and the result was an amazing success. Not only did the tethering system have the obvious benefit of keeping the boy safe, but a bond developed between this child and the dog that no one expected.

NSD began receiving more and more requests from parents of autistic children. There was clearly a need in our community, they’d seen real success with the program they’d developed, so from that point on, they chose to focus entirely on training and placing service dogs with autistic children.

Working dogs are new to the autism world. Working dogs for children are new to the entire service dog industry. Less than ten years ago, working dogs were only trained/placed with individuals considered old enough to handle the dog on their own -- the minimum age I found while doing my own research at the time was 16, and for most organizations it was 18. And no one was training dogs for people with autism. Well, almost no one. There was NSD. In my later research I found that there were one or two other organizations in the U.S. also working on programs for children on the spectrum but at the time of my initial searching, NSD was all that I could find.

My son is not and was not ever a classic “runner.”  He did have a tendency to wander though, and had on a few occasions either left or tried to leave the house. Taking him anywhere in public was a struggle -- he would wander off if I didn’t have him by the hand, but he didn’t want to be held on to and would always fight to get free. This was always frightening in places like parking lots or anywhere his pulling away from me could possibly put him in danger. 

The other benefit I hoped a dog could provide was simply to be a calming influence for Josh, who was prone to some pretty horrific tantrums. Josh is and always has been a very sensory experience-seeking child. I thought that a dog, with its fur, warmth, and constant presence, might just help Josh feel less stressed, give him an anchor, something he could count on always being there without placing demands on him. The testimonials from families that already had dogs were amazing. (Of course, all of our children are different, and you really don’t know how your child will respond to having a service animal and what, if any, relationship might develop, until you actually have one.)

With that in mind and after a great deal of discussion with Josh’s dad, I started down the road to get a dog for Josh. It took three years. It was a long, and often frustrating process that for us also involved changing organizations mid-course. 

One of the questions, and it is a big, important question regarding a service or assistance dog is “how much does it cost?” Depending on the organization, it will cost anywhere from around $8,000 to upwards of $15,000.  Before you stop reading because those numbers just stabbed you in the heart, here is the rub: this is not a “fee” for the dog. All of the organizations that train service animals are 501c3 entities, they cannot ask you to “pay” for the receipt of a dog. What they want is for you to fundraise for them. It’s a lot of legal semantics, because yes, you send them money, you get a dog. But the money is considered and deemed a charitable donation to the organization. You get a dog because you were accepted to their program.

It’s a fine line, and I know of only two exceptions: Canine Companions for Independence -- who were not training dogs for autistic children when we were going through the process but do now -- do not require any financial commitment from you at all. Despite being new to providing dogs for autism assistance, they are certainly not new to the service dog industry. Their application process is much longer and more involved than any of the others and I would imagine that because there is no financial obligation of any sort that it is much, much harder to be approved for a dog from them -- and I could not tell you what their waiting list is like. They have been training many different types of assistance dogs since 1975.  NSD is the other exception. While they do ask you to fundraise to reach a certain donation amount, you will receive your dog regardless of whether or not you reach that set goal. All of the other organizations ask for and require the donation requirement be met prior to receiving your dog.

So the other big question, "how long will it take to get a dog?" depends primarily upon which organization you work with and how long it takes you to meet the fundraising requirements. If you are fortunate to have the means to make the donation yourselves, then you will have your dog much faster than if you have to fundraise, though with NSD your place on the wait list is your place, regardless of meeting your goal quickly or not. Most of the larger organizations have programs in place to assist you in the fundraising process so there is usually a lot of help and guidance available.

We started out with NSD but after about two years on their wait list and facing what would likely have been another year, I was impatient. I started searching for alternatives and found one in 4 Paws for Ability.  They are an Ohio-based organization that had been training dogs to work specifically with children with all sorts of different disabilities, and autism was now one of them. Because they did not rely on a breeding program for the dogs that they trained (unlike NSD and several other groups), they were able to speed up the process somewhat. They also set you up for training once you met your donation requirement. 4 Paws uses donated dogs, rescued dogs, and some that they have bred for their programs.  All of their dogs are temperament-tested before being placed in to a training program.  There are pros and cons to this that I will address later.

I had NSD take us off their list, then set to work with 4 Paws. With any of the organizations, a training session is required. They vary in length a little, but you should count on anywhere from 1- 2 weeks where you will have to travel to their location to train with your new dog. This includes your child, since you will be working as a team. Most of the training is for the adult that will be the dog’s primary handler though, so, make sure if you decide that a dog is right for your child, you have the ability to travel with at least one other adult who can be with your child during the times they are not involved in the training sessions.  Keep in mind, the cost of your travel and related expenses will be up to you. Also remember that the journey home will include your dog, so if your travel has to include flying you will need to talk to the airlines ahead of time.

Our journey was a complicated one and we ended up coming home from our first scheduled training early, without a dog.  There had been issues in communication and some misinformation between the 4 Paws staff and myself, as well as a situation that arose during training that we were unable to resolve.  Due to some of the issues, I was not sure I wanted to continue with them but after some discussion with their director, chose to continue to work with them to get my son his dog. We went back a few months later for another training session with a different dog and came home with Buddy, my son’s autism assistance dog. 

Buddy was a rescued dog, a Katrina refugee if the story is to be believed, though he really had come to 4 Paws with very little information about his past. No one even really knows what kind of dog he is, though everyone seems to have a theory. We have decided he is a Catahoula Leopard dog, though probably not a pure-bred one. 

Having the dog has made a big difference for us. Josh does not mind being tethered to him, and seems to appreciate the freedom to move about on his own somewhat without anyone having to hold on to him physically. It has kept him safe and easily managed, from places like the grocery store, to very expensive furniture stores that would otherwise have been a nightmare, to Disneyland. Our first trip to Disney was before we got Buddy, and though it was fun, it was somewhat difficult having to keep Josh in a stroller all the time. We have been twice with Buddy, and both times were much better: I knew Josh was safe, never had to worry about him taking off and getting lost in the crowd, and he didn’t have someone hanging on to him and had enough freedom to move around on his own so he was happy.

Buddy was trained in tracking as well as obedience work, so if Josh ever did wander off, we would be able to get to the business of finding him very quickly and it was one of the things we practiced extensively in training.  Josh does not wander so much any more, so it’s a skill that I doubt we’ll ever have to have Buddy use. It is still important for many families, though. Josh has not developed a “special” bond to Buddy that any of us can discern so we have not seen some of the benefits that can come along with that, such as the dog being sensitive to the child’s needs -- but it does seem that Josh is more content to do whatever it is we are doing when he is tethered to the dog and not being held by the hand. It can make such an enormous difference.

Also, and this is one of the biggest benefits aside from safety, the dog is a wonderful ambassador.  When out in public with Josh before we had Buddy, most of the attention he got would be negative.  When he is with Buddy, it’s all positive. People come up to ask me questions now instead of simply staring at us, and I use the opportunity to do a little educating.  This is of particular importance for kids who are higher functioning and taking their dogs to school, as it really helps build relationships with the other children and even staff.  Instead of seeing a child who is “different” that they might not want to approach, the kids see the dog, and naturally want to know all about it  -- it’s an ice-breaker that almost always promotes positive interactions.

A service or assistance dog is not for everyone, so I encourage you to think very, very carefully about your decision. Dogs in general require a lot of care and on-going maintenance; dogs that are specially trained to work require even more. And having a child or children on the autism spectrum is itself a ton of work, so just remember that while potentially being of great benefit, you will be adding to your workload with a service dog. Having a service animal requires much more of you when traveling, for example.

You should also determine whether you feel a therapy or companion dog would be better for your family; they are not the same as service/assistance animals. A therapy/companion dog is still trained specifically for certain behaviors, however they are not trained nor certified to be in public places with you. My experience is with the service/assistance dogs, but I would imagine a therapy dog would involve less expense overall. It really depends on what your needs are.

Look at your candidate organizations as closely as possible, because there are a lot of considerations: Ask as many questions as you can and then make the best choice for your family:
  • Some organizations will send their trainers to you to spend time helping you after you get home from your initial training, which I believe is invaluable. But not all of them do this.  
  • Some use dogs only from their own breeding programs, ensuring the breeds and temperaments that are necessary for these dogs to work as they do.  
  • Some will use rescued dogs or donated dogs, and even though they have all been temperament tested and trained, you never know what that dog has been through in the past -- this is a concern with Buddy right now.  
  • Only one of the organizations currently trains the dogs to track, if that is a skill you would like them to have.  
You have to decide what your priorities are, look at all of your options and go from there.

All of the organizations have satisfied and very happy families that can tell you how great their experiences were, so read the testimonials. Just keep in mind not everything always goes smoothly.  If I had it to do over again knowing all that I do now, there are some things I would do differently but I would still want a dog for Josh.  In the end, if you believe a service dog could help your family/child, it will be worth what it takes to get there. 

Here is a list of the organizations I've found that are training dogs for children on the autism spectrum: