Touch Orange: Early Autism Intervention

4/23/2013

Kate's reaction to hearing that she would be doing Discrete Trials.

If your child receives a diagnosis of autism or a related disorder (before the age of 5) in New Brunswick, you will be referred to one of the autism agencies in the province for services. You will wait a really long time (as the waiting list is extensive) and eventually your child will receive 15 hours of one-on-one autism therapy from an autism support worker (ASW) based out of that agency (the literature says you will receive 20 hours but 5 of those hours are designated for administrative duties because this therapy is HEAVY on collecting quantitative data.) It is unclear what education the ASW needs but some training in ABA therapy is a must. I have searched for specific requirements and have yet to come across them. Please feel free to educate me if you know the prerequisites for this position. Before I begin telling you how I feel about ABA therapy please know that I am very pleased with Kate's ASW and her clinical supervisor and they have made every attempt to work with us as we maneuver through a therapy option we don't agree with.

It is YOUR right to receive your intervention services in your home, in the daycare setting or in the
agency itself. The services usually begin one-on-one and eventually expand to allow the child interaction with peers. I really dislike the idea of 3 hours of therapy with only one adult in a small room each day. While it seems like the one-on-one attention would be great, it really detracts from the incidental teaching and peer interaction I believe our children really need. There are times for one-on-one therapy. I know that. I just do not believe it is in the child's best interest to receive that model of therapy for 15 or more hours a week. By the way, did you know that research states our children need 40 hours of therapy per week?

You have only ONE choice of therapy model and that is therapy guided by the principals of ABA or applied behavior analysis which as far as I can tell, locally anyway, results in a lot of IBI (intensive behavioral intervention) in the form of discrete trial training (DDT). I have taken ABA training offered by the University and I have been vocal about my issues with the lack of choice and the dangers of not varying treatment options. (Call your local agency to ask about their philosophy in terms of ABA therapy.) We would never have chosen ABA for Kate. We have a real problem with discrete trial teaching and we feel strongly that is not the right path for Kate. I can't stand the thought of her sitting in a room with an ASW and being asked to "touch orange" over and over so they can collect data to prove you she knows the colour orange. Here is a better way to teach Kate orange. Show her orange in a real world setting, a setting that is interesting to her. Follow her lead and help her learn orange the way you and I did. Naturally. DO NOT ASSUME that these children can not learn in their natural environments among their peers. We desperately wish we had some input in this decision. I have posted a few video example of Discrete Trial Training at the bottom of this post. It makes me ill but that is just my opinion. It might be right for you. You decide. Below those, I have posted some video information about therapies I would like access to. Again, you can decide how you feel.

At this point, Kate is receiving therapy in her daycare (because we firmly believe that a natural setting makes more sense than an artificially constructed one) and we have made the best of what the province has to offer. We have asked her clinical supervisor to REMOVE the discrete trials as we feel strongly that they are NOT the best option for Kate. Here is a link to some research to that effect.

Within the scope of the principals of ABA there is a therapy called Pivotal Response which is highlighted in the article. It is not our ideal choice, with so many other excellent therapies
available (Floor-Time, Son-Rise, Scerts, Hanen etc), but it is more naturally occurring and authentic than DTT and we have asked that Kate receive Pivotal Response Treatment or Incidental Teaching in place of DTT. You also have the right to ask that your child be treated this way too, but I will leave that up to you and your team.

Each time I ask for more varied or more current and progressive therapy options for Kate I am reminded that NB is a leader in autism services. I believe that over a decade ago many amazing parents, therapists and doctors fought tooth and nail to bring us this far. I am just asking to keep the progress moving. See below for examples of DDT (which we do not approve of) and below that I have included other more progressive forms of therapy.

Discrete Trial Training

Below are example of therapies we would love to have access to beginning with Stanley Greenspan's Floor Time Approach:

Amy Wetherby and Barry Prizant's SCERTS model:

9 Comments

Stacy

4/23/2013 09:19:54 am

I wanted to yell "Take that poor kid outside and put him on a swing!!!!!!" Stop asking him to touch the freaking picture of a swing. Had to stop watching. Does she take him outside? Maybe I should watch the end...

Shanell Mouland

4/23/2013 09:29:34 am

I know, right! I, and a person that shall remain nameless, had great plans to train Kate to say "Fuck Off" every time someone told her to "touch ______". Her ASW is so sweet so we couldn't do it. We are angry at the model of therapy not the great people.

Therapist: "Touch Ear"
Kate: "Fuck Off"
Therapist: "Touch Ear"
Kate: "Fuck Off"

Am I a terrible mother if I find that really funny? ;)

Sara

4/23/2013 08:05:13 pm

If you're a terrible mother, then so am I'm because laughing at the idea of that conversation.
It is so frustrating to know that you're only offered ABA therapy. What harm could it do to allow people alternatives?? What could possibly go wrong with letting parents chose for their own children?? I realize I only feel about 1/5664466 of your frustration....

Shanell

4/25/2013 04:21:08 am

Alternatives are threatening to the Status Quo. Other therapies are often called Hokey because there may not be mountains of quantatative data behind them. The qualatiive data from the real experts (moms and dads) is enormous but to some this is not acceptable. I think I might design that "Fuck the Status Quo" t-shirt because I know at least one girl that would wear it! :)

Sophiestrains@gmail.com link

4/24/2013 09:27:09 am

I totally agree. I do have to say though that so far the people we have met in the special need community have been quite moderate and unofficially floortime-like. I wish the province would get on board with implementing changes to the system, but can only imagine the bureaucracy that would entail. I really don't see who can still support ABA as the only proven method.
I'm with you on the "touch orange" bit :)

4/25/2013 04:26:53 am

Since I know you are still waiting for therapy I imagine you are frustrated on many levels. Both the head of Autism Canada and the head of the Autism Society of America feel that it is ludacrous to posit that one therapy is appropriate for our children who are so diverse in their needs.

Susan James

4/28/2013 08:16:46 pm

I applaud you for speaking out against a therapy that goes against children's basic rights (imo). In NB we have a Early Learning curriculum for all children that values them as confident and capable. Believing that children learn best when they are provided with opportunities to engage with real materials that focus on their interests. I wonder why this can't be a possibility for children with autism as well. If we really want inclusiveness for all children aba therapy is not the way to get it.

4/29/2013 04:16:06 am

Susan,
It is so nice to know that I am not alone. In fact, I am learning, that there are a large number of people who want a more naturalistic way of therapy for our children with autism. There are so many excellent minds developing peer/parent reviewed interventions and I am cringing that I cannot access them. PREACH!

Milly

1/15/2014 01:15:46 pm

I felt the same way when my son started ABA. It is such a strange unnatural way to teach a child to learn. My initial thought was he's not a dog! I never imagined that this would be the way I would teach my child, but as stated above there's not many options that are feasible for us. So, it is what it is and I need to try to implement some of the other therapies at home with him as well.

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I talk about Autism, a lot