The Difference a Year Makes

My Project 2-001

“Our child can’t get into ABA, so I guess we’ll have to settle for Autism Outreach.” I’ve seen this comment a few times recently, and it makes me sad. People think they are settling for second best with our local Autism Outreach program (based on DIR/Floortime). The truth is, ABA and DIR/Floortime have quite different goals and perspectives. While ABA has its strengths, there’s a lot of things it can’t do well. Those very weaknesses of ABA are, in fact, Floortime’s strengths. At least for our family, we have come to realize that those weaknesses of the ABA program made it second best for our children. We left ABA behind in favor of a family-based, developmental approach and for our kids, it’s made a big difference.

This post is for families wondering what choice to make, or wondering if they made the right one for their child. My purpose is not to criticize, although I can’t help comparing. Rather, I am sharing the experience of one family with the somewhat unique experience of having participated in two very different programs.  Deciding what to do is hard.  Some other families share our experience, others don’t, but our perspective might provide useful information or reassurance for those who worry about having “second-best.”  

The Starting Point

When we entered the ABA program, we were very hopeful and relieved to have a team working with us to help our child grow. For those who don’t know, ABA works with a curriculum called the ABLLS (Assessment of Basic Language and Learning Skills). This curriculum lists skills in many domains (e.g. self-care, expressive language, spatial perception, motor skills) and sequences them from easiest to hardest. Our child was evaluated to see where she was at in each domain, and then “programs” (usually around 20 at a time) were devised to work on the next step in each skill area. Every day her tutors practiced each skill many, many times, until it was memorized, mastered, and generalized, which means she could do the task in a situation somewhat different from the one in which she learned it. She was motivated, especially at first, through external rewards such as snacks or time with a favorite TV show. The idea was to fill in missing skills and manage undesirable behaviour, with the hope that she could make up lost ground and become more like her peers.

We had people working with our daughter for 6 hours every weekday, alternating between programs and playtime. Our tutors were loving, skilled, and enthusiastic people who cared about making a difference for our child. Especially in the first two years, she learned and changed a great deal. Still, by the start of the third year we were having misgivings about the program, enough to put our newly-diagnosed son into a DIR/Floortime based program instead of joining his sister in ABA. We hesitated to end her participation as well, because we knew that her school support funding would be jeopardized if we did. Full-time funding is automatic for kids in ABA in Manitoba, at least for the first three years of school.

So why the misgivings? There was no question that she was learning a lot about things she could memorize:  directions, words and actions, and self-care skills like dressing and toileting. Our concern was with open-ended skills that involve problem-solving and creativity.  Our daughter wasn’t really sharing her own ideas, either in words or play. For example, in hide and seek (learned by watching a video of someone else playing), she would always look in the same three places in the same order with the same words, and would be confused if we hid somewhere new. She wasn’t showing much interest in exploring new things.

We were also very concerned about her social skills and flexibility. She had learned lots of social activities by “rote” – through strategies like video modeling, social stories and chaining. She knew what to say or do when given a certain prompt. But if someone tried to interact with her (even nonverbally) in a way she hadn’t “learned,” she turned her back. I didn’t know how to engage her in a way that was mutually enjoyable for longer than a few seconds.

We believe there were benefits to having energetic and caring people interacting with her every day, but the approach seemed to be lacking something. We wanted to use some of the approaches we were learning for her brother in the Autism Outreach program, but the ABA strategies and demands on her time didn’t work well with that idea.

So What Did We Do Differently?

A little over a year ago, we took the leap and withdrew her from the ABA program. We were fortunate enough that the Outreach program was able to offer her some limited evaluation and support. ABA focuses on behaviour and skill development. DIR/Floortime focuses on social and emotional development, with the belief that all children progress through the same stages, just at different rates. By supporting our kids at their current developmental level, we can nudge them towards the next.

1. Getting Comfortable

The first thing was remembering that all kids learn best when they are comfortable and happy. Most children with autism have trouble with regulation: processing sensory information so that they can focus on the world around them. So we spent some time learning how to keep our daughter calm and alert. Some kids need lots of exercise or physical pressure, or objects to manipulate. Every child is different. For our daughter, it meant lots of time outdoors, lots of hugs, observing and following her interests, and paying attention so that we knew when her world became overwhelming. Our autism specialist was a great help in this process, and for the steps that followed.

2. Learning to Play

The next step was to build her ability to interact with people – starting with her real interests, and expanding on them. Building knowledge and skills is like spinning a web – we connect new ideas to familiar experiences and ideas. So we began small. She likes to draw and play outside, so we spent lots of time doing those things with her, nudging her gently to allow us to participate and contribute ideas too, but in a way that she enjoyed.

Rather than working on specific language and behaviour skills, our goal has been to strengthen the areas that are most difficult for her – social interaction, play, and dynamic thinking. All three are open ended; there is no one right way to do it. So every day looks different, and it looks a lot like regular family interactions. But it is takes thought and effort for the adult to keep it going.

Especially at first, it is important to make special times through the day for this “Floortime,” because it is a time for parents and children to learn together and to build relationships.

3. Learning to Think

Over time as we got better at this, the same strategies we used in the playtime spilled over to all of our interactions. Every routine task, like getting a snack, finding a missing toy, or baking cookies becomes an opportunity to work on these critical social and communication skills. Gradually, our daughter is becoming more independent, able to try new things.

It was hard to go from a program where every activity is listed ahead of time, to one where we simply take advantage of opportunities for interaction through the day. But we have found that those everyday, incidental interactions can add up to a lot of learning. We have a short list of goals we keep in mind as we go.

Our school thinks about learning in a similar way, and they have been happy to adapt the same approach to the school setting. It is important to note that their participation and support has been a critical part of our daughter’s success.

And Now…

As time goes on, the process of learning looks increasingly like the product. In other words, as we work towards a goal, what we are doing looks more and more like our hoped-for outcome. Our goal is to have children who are communicating, developing competence, and becoming responsible. More and more, that’s what we’re starting to see. “Therapy” now looks like a family doing things together. We’re a team. We have a long way to go and more to learn, but this is the track we are on. Our kids are not isolated from family and community life. Their tasks and activities have meaning for them and (increasingly) for us.

The biggest, most noticeable change? Our girl has learned to enjoy interaction for its own sake. She’s gone from a child who would choose to be alone all the time (because she didn’t have the skills to keep interactions going), to one who loves to play with her family, teachers, and classmates. She invites us to join her. She doesn’t always know how to sustain it, but she’s trying and we feel she’ll get there given time and practice.

Other changes:

  •  Imagination: she’s taking ideas from books and stories and acting them out, sometimes changing the details
  • She now enjoys puzzles and ball play. She really didn’t enjoy either as tasks to complete, but now they are shared social activities and have become fun.
  • She follows directions and is often happy to help me with small household tasks.
  • Spoken communication has truly begun. We’re hearing what her ideas and thoughts are.

This program hasn’t been a “cure.” I don’t think a “cure” was in the cards for her. We know she still has a long way to go, but we feel a good foundation is being laid for continued learning. We didn’t know how far behind she was until she moved forward.

And how is my son doing, without those first years of ABA? Unsurprisingly, he’s a bit weaker on the compliance and self-care set of skills that our daughter had been at his age. But he’s much stronger than she was at his age in social and communication. He’s happy, and he’s willing to try things. I do wonder what he’d be like at this point if he’d had the same training as his sister, but he seems to be learning things as he’s ready.

What I am more concerned about is that my kids learn to be thinkers, communicators and problem-solvers, and I see those skills developing every day. I’ve come to the conclusion that the social and communication skills are a more important foundation for future learning.

I am grateful for all that went into our daughter’s ABA program. To be honest, some days I miss it. The team worked very hard and had our daughter’s best interests at heart. The ABA program did what it was supposed to do, and according to their goals, she was succeeding and making progress. But we had different goals for our daughter, and that program was taking us in the wrong direction.

Yes, it is difficult to learn how to help your child and then put in the time that’s needed. I can’t emphasize enough the importance of building a community of support. We have benefited from a group of friends and family who gave their time to help us in lots of ways. No matter what you do, a child with autism needs intensive support. The only way to grow in social skills and communication is to practice being social and communicating – and that takes time and energy, especially in the early stages when the child isn’t yet reaching out to you.

But it can get better.

This morning our daughter was pestering me to get a second pillowcase out of the linen closet so we could have a potato sack race. She got the idea from a book, but she figured out what she needed and did it her way. And she wanted to hop down the hallway with me.