By Michaela Gordon, OTR/L
There was a recent 3-part series in the February 2012 issue of OT practice about working with people with Autism. The first article was written in regards to authentic partnerships with people with autism.
There was a 23-year old young man named Paul that shared his insight about what is was like to have therapists working with him and the importance of these practitioners having expectations for him.
At age 14, he was able to type out his thoughts through a technique called the Rapid Prompt Method. He expressed that it was important that people believe in his ability and that the people around him had expectations for him when working on specific goals.
Research has indicated significant differences in a person with autism’s receptive (language the person understands) language skills and expressive (what the person verbally/physically expresses) language skills. (Dawson, Soulieres, Gernsbacher & Mottron, 2007) The young man Paul reported that he understood what others were saying to him, but he was not able to express this knowledge or verbally communicate with others. He pointed out that before he was able to express himself through keyboarding, others did not expect him to participate in conversation and would carry-on conversations without him.
Recent literature has revealed significant discrepancies in determining a person with autism’s intelligence at all ends of the spectrum because the standardized tests rely on expressive verbal responses and demonstration of motor skills. (Dawson, Soulieres, Gernsbacher, & Mottron, 2007; Estes, Rivera, Bryan, Cali & Dawson, 2010) The inaccuracy of these results impacts society’s perception of these individuals’ abilities and ultimately impacts their quality of life.
The young man Paul in the article was quoted giving advice to professionals, “Always acknowledge a person’s intelligence and they will be more receptive. Often we can be perceived as being unintelligent and it can diminish the relationship between teachers and students. Structure and direct instruction are important to help initiate activity.” (Kotler & Koenig, 2012)
Paul also felt that it was important to build as much independence as possible. He felt that learning self-help skills was critical in order to live independently in the future. He felt that therapists play a major role in breaking these tasks down and practicing them regularly in order to acquire the skills.
Paul also discussed his perception of relating to others. He expressed that he can feel empathy towards others, but often times, he cannot express those emotions in a way he would like. For instance, he may be able to type out his feelings, but would prefer to hug the person. However, when attempting to physically comfort another, he would become disorganized in those emotional situations and would be unable to express his feelings. Paul expressed that he would like to see therapists acting in more personal ways such as recognizing a person’s disorganization and helping them connect their minds and emotions to their physical responses. (Kotler & Koenig 2012)
Paul expressed that occupational therapy has improved his sensory processing skills through the use of sensory diets so that he can use strategies that support him during different states of anxiety. Paul also expressed that daily activities were arduous for him and he wanted to hear from others during those learning experiences that he was learning, that he could have a typical life, and that he could be independent. (Kotler & Koenig, 2012)
Paul was asked about what he thought his strengths were as a person with autism and how the way he processes information benefits him versus thinking of those ways as dysfunctional. His response was, “ I never dreamed I’d reach the level I have. I thought I was trapped forever without a voice. It is so mind blowing to face having my autism as part of me, but not defining me. Very liberating.” (Kotler & Koenig, 2012) He also gave advice to practitioners about focusing on a child’s strengths first. He said, “Younger children very much need to hear that they can accomplish more than some people believe is possible.
Specifically, it is very helpful to measure progress, making note of not only needs, but also talking about strengths and how those strengths overcome areas of need. Allow for success often and interpret success as the result of a person’s strengths.” (Kotler & Koenig, 2012) Paul made one more statement in closing of this article and said, “I feel the answer lies in my acceptance of having autism as a positive thing. Don’t’ dwell on autism as an injury. Listen and observe and go with talents. If strengths are used to take goals on, the autistic person each day earns respect for himself.” (Kotler & Koenig, 2012)
References: Kotler & Koenig (2012). Authentic Partnerships with Adults with Autism. The American Occupational Therapy Association, OT Practice, 6-9.
I thought this article was great. So often we approach helping others from the way we see things and through the approaches we learn. As a practitioner working with children with autism and their families, finding a balance between the child’s strengths, and alternatives for learning and working on skills for interaction in their school and community environments is an ever evolving process. I believe that each person should find value in who they are and I do agree with Paul, that we should foster each child’s sense of worth.
I also agree with Paul that children with autism do need structure and support to initiate tasks. For all people involved in working with a child with autism, I believe the key is that this structure and instruction have only one agenda and that is to help the child in a way that empowers them. I feel it is not necessarily the approach one takes to teach the child because every child needs different instruction.
This instruction can vary given the situation or period of time. What is critical when providing instruction is how you are “being” towards that child. Each child deserves honor and respect. The person supporting the child may feel they need to implement an environmental adjustment to reduce stress, a sensory break to re-organize, or to encourage the child through a non-preferred task. Whatever choice is made could be different depending on the situation and the person making the choice. Regardless of the approach, walk in that child’s shoes first, communicate your intentions, and proceed forward in the best interest of the child.
There have been many times that I have sat with parents and after long discussions with them, we have come to a momentary stand still about how to proceed forward when a child is in a consistent state of disregulation. These have been described as regressions and it is important to carefully put a plan in place that recognizes the child’s challenges during these times and develop a plan to organize the nervous system. This is also a critical time to listen and observe the child as they are the ones that have the final say in whether the plan is effective during this time.
Typically, we (the adults) decide to give up our agendas and let go of our momentary ambitions for the child. In my opinion, letting go of these ambitions can be difficult as we are humans with a goal of helping a child grow and succeed. As my mentor would say, “Welcome to the human race!” which was a comment I frequently was told when I was trying to make a situation better from the only perspectives that I could imagine possible and that was to keep pushing forward! We really wanted the child to be learning the higher cognitive and motor skills. We would be trying to come up with strategies to do this, but in actuality the child needed this time for organizing the nervous system and we just simply needed to respect that.
This realization often times felt to us adults that we were going backwards, but really as a team, we were moving forward because that child was empowered because we were listening to them and we were then moving at their pace. The child would start to be able to express what they needed, they would start to feel better, and in the long run, they ended up with greater participation in the therapy and had more successful learning experiences.
I would also like to comment on test scores. Testing time for parents that have children with autism can be a stressful experience. The parents often times see their child making so many functional gains in their natural environments, but yet the test results do not reflect that. Perhaps these test scores divert us away from strength-based focus. We live in a society that asks for diagnosis, measurement of ability and needs, and prognosis. On one hand, these variables give us direction and help us build a support plan for the child. On the other hand, it can also create a stigma about the child’s ability, puts a focus on their issues, and limits the perspective about what they are capable of doing when given the correct supports. However, as mentioned in the article, the skills are being measured from one focal point in which motor skills are involved and typically no assistance can be provided during the testing process. Depending on where their services are taking place or who is paying for the services, in some ways direct their plan of care. It is important that there is a blend in their plan of care by looking at all the possibilities for learning that continue to build their strengths and support them to develop needed motor skills for daily tasks. I believe it is important as a practitioner to add in qualitative data to all reports to indicate progress that has been made and to indicate approaches that are working for them in the natural environment.
Paul mentioned how important the sensory opportunities were for him in order to reach optimal levels of bodily organization. Over time, he was able to express his more specific needs, which then created more effective plans. Each person has specific needs and responses to sensory input. Research on sensory integration has been able to guide practitioners in categorizing responses to sensory stimulation and provide a plan according to those needs. However, patients with autism can have different needs from moment to moment or within different time periods. It is important to observe and communicate with the child about those needs to ensure they are being properly met. It is also important to have an open dialogue with parents, teachers, and other people in the child’s life to ensure they are providing supportive sensory choices to the child and making adjustments to the sensory opportunities as needed.
Lastly, Paul made mention of acceptance of the person with autism and helping children with autism expand their talents. Goals should be targeted for problem areas, but should be addressed using the person’s strengths to attain the goal. We fall into our place in the world because we are each unique and have different purposes.
It is so exciting when a child with autism reveals a hidden talent or when they say their first word whether it is expressed verbally, with a picture, or with a communication device. It is so amazing to connect with a child that can direct you through gestures and communication devices to get their needs met. It is touching to see a child with autism hug and kiss their moms and dads with a smile on their faces. Those are the gifts they give to us. Through these special moments they teach us not to limit them, not to make assumptions about them, but to give them opportunities to express themselves in ways that are true to them.
Let’s not focus primarily on the difficulties, but give these children opportunities for success and joy in as many moments of their lives as possible. Let us teach others to embrace their gifts and to support them to use their amazing talents so that they too can contribute to society. It is always a pleasure to be part of these life journeys. Thank you!
Michaela E. Gordon, OTR/L