Assembling Our Autism Support Team

(Warning: This is another very long post.)

Despite all the reading I did during the year leading up to Kiddo’s diagnosis, I was surprisingly ignorant about autism intervention. In my head, once we cleared the hurdle of getting a diagnosis, we would just sign up for therapy. Easy, peasy.

Or not, as it turned out.

Confusion

We already had an occupational therapist, and Kiddo’s early childhood music teacher was also a certified music therapist, so we planned to start music therapy because Kiddo is so musically inclined. But we knew we also needed a speech language pathologist (SLP) and possibly a behavior consultant and behavior interventionist. We loved the SLP who had conducted Kiddo’s speech assessment, but her caseload was already full for the year.

As we began our search for professionals to support Kiddo’s development, we discovered that there are many different approaches to autism therapy, from Applied Behavior Analysis (ABA) to Relationship Development Intervention (RDI) to Social Thinking and many others. Trying to decide which one would be the best fit for us felt like an impossible task, and the plethora of conflicting information available on the Internet only compounded the problem.

ABA was the only method with a large body of research to validate its effectiveness, but a lot of anecdotal information on the Internet seemed to condemn ABA for teaching children robotic, rote behaviors.

I found a lot of stories about people’s positive experiences with RDI, and the information I read about it made sense to me on an intuitive level because it seemed like a much more natural approach, but I also worried about the lack of independent research into its effectiveness.

The SLP who conducted Kiddo’s speech assessment used an eclectic approach, including SCERTS, Social Thinking, and other programs. That approach appealed to me because we could apply the aspects of each one that made the most sense to us. But we still needed to more professionals to help us learn and implement the programs.

A couple of people I knew gave glowing recommendations of a particular SLP in our area. She offered a parent-led style of autism intervention, meaning she would train Hubby and me in the therapy methods so we could apply them at home 24/7 rather than dragging our son to therapy appointments. We met with her and immediately felt very comfortable, so we decided to try her approach.

Breakdown

Our SLP was warm and caring, and we enjoyed our sessions with her, chatting and learning about her approach to autism therapy. For several months, we met with her weekly so she could teach us how to communicate and interact with our son in a way that would support his development. Some of the things she taught us made a lot of sense: speak slowly, use fewer words, wait longer for his responses, reduce stressors, remain calm in the face of meltdowns, provide deep pressure to help him calm down, and so on.

But some other aspects of her approach bothered me. One major concern was that the parent training sessions didn’t involve Kiddo. We had to find somebody to babysit him so we could attend appointments. Although she did see our son a handful of times, it became clear that she didn’t know our son at all, and her methods increasingly felt to me like a one-size-fits-all approach rather than one that was tailored to his needs.

It also bothered me that she wanted us to restrict our son’s access to objects of fixation. At that time he was obsessed with clocks and had even taught himself to tell time (top and bottom of the hour only) by watching YouTube videos. He loved clocks passionately and for a while he had one he carried everywhere, even to bed. The idea of denying him access to a source of such comfort and passion disturbed me deeply and we chose to ignore that advice.

Despite my concerns, we continued with the parent training. We knew others had had great success with this particular SLP and we didn’t want to give up prematurely. But a couple of months into the parent training sessions, I felt myself slipping into a depression. I had struggled with depression for most of my adult life, but the years since Kiddo’s birth had been blissfully depression-free, even through the stress of waiting for his autism diagnosis. So in the months leading up to his fourth birthday, when I started to feel that familiar dark cloud creeping back into my brain, I was scared.

At first I blamed stress. I was juggling my work as a freelance writer with my responsibilities as a stay-at-home mom to an autistic preschooler, and Hubby was out of town for work one week each month. One day when Hubby was away, I walked into our SLP’s office for an appointment and unexpectedly burst into tears. Usually my son didn’t attend our appointments, but on this occasion he was with me. When I broke down, the SLP quickly abandoned our scheduled plans and instead guided us through a slow, quiet session involving lots of deep breathing and deep pressure. The activity was supposed to help us regulate our emotions, and I did manage to stop crying, but that dark cloud in my head was still growing.

The SLP and I talked about my increasing stress level, and she suggested visiting a couple of daycare providers in the area who had experience with her methods. I had always resisted the idea of putting my son in daycare, but I considered the idea and visited two of them. Logically, it seemed like the right thing to do, but I couldn’t bring myself to commit to the idea. If I was going to put Kiddo in childcare –- something I had never wanted to do –- I thought it made more sense to hire a behavior interventionist trained in autism who could work with him one-on-one rather than putting him in a general daycare with a bunch of other children and staff that didn’t have autism training. While our SLP never said so explicitly, I always felt like she was steering us away from other autism professionals, and her apparent belief that we should follow her approach exclusively was in stark contrast to my desire for an eclectic approach.

Most of all, there was something about the way this SLP approached autism intervention that made me feel like our son was broken. Until that time, I had never felt that way about his diagnosis. In many ways, I had seen his autism as a both a gift and a challenge because it did provide him with some gifts, such as his incredible memory, strong visual-spatial skills, and ability to focus on a task. Our SLP never said anything explicitly that suggested Kiddo was broken, and in fact she was horrified when I told her how this method of intervention made me feel. I think it was because this approach made me second-guess everything I did with or said to Kiddo, and because this approach seemed to focus exclusively on the deficits of autism and the risks to Kiddo’s future well-being, without also celebrating his particular strengths.

The decision to end our professional relationship with that SLP was agonizing. I still wasn’t any closer to knowing which type of autism intervention was best, and I wondered if we were giving up on this SLP too quickly, but as my stress level increased and my depression deepened, I knew we had to make a change. It was hard to do, especially since we liked this SLP so much on a personal level, but we had to do what we felt was right for ourselves and our son.

Assembling Our Team

Almost immediately, my mind cleared and my mood brightened, and I knew we had made the right decision.

By this time, it was April. I called the SLP who had done Kiddo’s speech assessment, and she said she would try to fit him into her caseload when the new school year started. Within a couple of weeks we hired a behavior interventionist (BI) I had met at StrongStart, the play-based early learning program Kiddo attended. She had a degree in early childhood education, many years of experience working with autistic children, and we all felt very comfortable and relaxed with her immediately.

Kiddo responded to his BI right away. Several times a week she would pick him up at home and take him out for a few hours to work on his communication, social interaction, emotional regulation and general life skills, either in a group setting like StrongStart or one their own at the park, library, restaurant, stores, or wherever. We didn’t follow any specific program. Rather, Hubby and I would chat with the BI when she came to pick up Kiddo, and we would let her know about any particular challenges Kiddo was having, and during her time with him she also identified areas where he needed help. As a result, our intervention goals for Kiddo were very dynamic and flexible, and he conquered many of his challenges very quickly with the help of his BI.

I continued reading as many books as I could about autism and attending courses. Hubby and I both attended one taught by the authors of The Incredible Flexible You (TIFY), a Social Thinking curriculum for early childhood. We loved it and couldn’t wait to start implementing it with Kiddo. I felt empowered. Reading and taking courses and learning from a variety of autism professionals was giving us the knowledge and skills to help Kiddo with his challenges in a way that worked for all of us.

By the fall, Kiddo had already made huge progress, and in September he finally began working with the original SLP we had seen for his speech assessment a year earlier. She began by conducting a new assessment of his skills based on the SCERTS model, and then we began seeing her weekly. Not only did Kiddo attend the sessions, but he was the focus of the sessions. Our SLP would work with him one-on-one while including me in the activities so I could learn the methods she was using with him. This approach to parent training made much more sense to me because involved all of us and it was tailored to Kiddo’s individual challenges and incorporated his strengths and areas of interest as support tools.

Still Going Strong

I think almost every family with autism goes through a period of struggling to find the right professionals to work with, and we were no exception, but I love the team we have now. We see Kiddo making progress on an almost daily basis, and Hubby and I feel supported by our team, not stressed out by them. As hard as it can be to let go of those professionals who don’t click, I think it’s essential, for the sake of every member of the family.

I think the key to finding the right team is to educate yourself as a parent, through books, courses, and work with professionals, and to really listen to your gut. If your head tells you a method should be working, but your gut tells you it’s not, listen to your gut and try something different. You can always go back and try something again later. Autism intervention isn’t a road –- and there certainly is no map; it’s a city full of two-way streets, detours, and fabulous destinations.

1 thought on “Assembling Our Autism Support Team

  1. In some upcoming posts, I’ll blog about a few of the autism intervention programs we’ve used and enjoyed, such as The Incredible Flexible You, SCERTS, and The Zones of Regulation.

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