Autism and Occupational Therapy

Autism and Occupational Therapy

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 Prompting 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 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, other 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 forceful 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 are 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. He 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 became disorganized in those emotional situations and he was 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 dream 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 stake 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.

 

My thoughts:

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 response 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. Lets 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!

 

 

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Handwriting Without Tears

My first several jobs as a therapist were in the school setting. One of my responsibilities was to teach handwriting to the students. I exposed them to many choices of pencil grips, papers, curriculum, and other strategies to help students improve their handwriting skills. I also was involved in educating teachers and other staff in these strategies so the students could use them on a regular basis. The challenge I found was that each classroom was using a different curriculum so the style being taught was not necessarily uniform. Children would report confusion with the styles being taught from one year to the next, including terminology that was being used to teach handwriting. The other issue that seemed to occur was their seating position. Some classrooms had children of different heights sitting at one table or children were provided with desks and chairs that did not meet their postural needs. This created less stability for children while trying to produce legible written work. Materials were also another issue as each classroom had different types of pencils, papers, and worksheets that did not meet every student’s needs and were not always age appropriate. After seeing all these challenges, I began to search for other avenues to teach handwriting. I had heard about Handwriting Without Tears and about 2 ½ years ago, I decided to attend the Handwriting Without Tears conference. I thought the curriculum was excellent because it was developmentally based. The materials are user friendly and can be used with children with a variety of needs. I also like that the products are a reasonable price and the curriculum is easy for parents and teachers to learn. I then went on to get trained in the Print Tool, which is a handwriting assessment. I feel this is a great assessment as it measures 8 components of the child’s handwriting and gives a clear picture of what aspects of handwriting need to be addressed. Once I completed both of these courses, I then decided to become a Level 1 Certified handwriting specialist. Handwriting Without Tears is the curriculum that I choose to use in combination with other therapeutic modalities.

 

I am sure there are many parents as well as teachers out there that are wondering if technology will soon take the place of paper and pencils. Perhaps at some point this may happen. Electronics are becoming a means to provide children with information and to express themselves. However, the literature is indicating that there is still an importance for handwriting and there is still a need to develop handwriting skills. According to a research review conducted by HWT in 2009, handwriting continues to be a primary tool for assessing children’s knowledge in the classroom (Feder and Majnemer, 2007). Another studied conducted by Marr, Cermak, Cohn, and Henderson (2003) indicated that children in kindergarten are now spending 42% of their fine motor time on paper and pencil activities during the school day. Handwriting skills are also important, as they are part of many state standardized assessments. In 2005, a handwritten essay was added to the College Board SAT. Graham and Harris (2005) did research that indicated that handwriting plays a major role in producing creative and well-written text.

 

The research review by HWT (2009) supports the structure of their curriculum. In 1996, the National Association for the Education of Young Children recommends that infants through eight-years of age learn best when the teaching methods are developmentally appropriate. The Handwriting Without Tears curriculum focuses on this with the variety of materials and activities i.e. making a person with wood pieces and other materials; drawing a person; coloring; pre-writing strokes; sensory-based materials (dough, chalk, sponges); and music. HWT curriculum also focuses on the biomechanical skills that are required for handwriting. Rosenblum, Goldstand, and Parush (2006) found that children that demonstrated insufficient posture, fine motor skills, and positioning were less proficient in handwriting than children that had sufficient biomechanics. A study done by Smith-Zuzovsky and Exner (2004) pointed out the connection between the quality of children’s hand skills and their seated position. The Handwriting Without Tears curriculum includes instruction in checking seating as well as activities to promote good posture, paper positioning, and writing utensil grip.

 

The other question parents may have is how will their child develop good handwriting skills and who will teach them these skills? A 2007 national survey indicated that only 12% of teachers rated their formal preparation to teach children handwriting as sufficient. A study done by Graham et. al. (2007) suggests that professional development should be available to teachers in order to prepare them for handwriting instruction. Parents can seek out handwriting workshops in your area or seek out an occupational therapist to conduct group instruction with your child along with some of their peers. As cited in Medwell and Wray’s literature (2007), children that were enrolled in an 8-week handwriting intervention program produced more legible handwriting then their peers, with a 46% increase in the quality of written text. This literature indicates the importance of children receiving daily, supervised handwriting instruction. Parents can also seek out individual occupational therapy services to help your child develop age appropriate handwriting skills. The occupational therapy services can provide your child with a combination of treatments in conjunction with handwriting instruction. I have found when the child is responsive to treatment and the family has strong carryover of therapeutic activities, that not only does the child’s handwriting skills improve, but also their sensory-motor skills and social-emotional skills. I have also found that teachers are able to provide suggested strategies and materials to the student with much success. I have seen many children have great success with the HWT program and I look forward to continuing to help children develop stronger handwriting skills.

 

Reference:

Handwriting Without Tears-Research Review: http://www.hwtears.com/hwt, (2009)

 

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Transformation of Beliefs

Girl drawing back to schoolFrom the moment we are born, we are establishing behavioral responses, which eventually become belief and thought patterns. We also develop perceptions of ourselves and begin to develop ways to describe ourselves. Whether these thoughts are positive or negative to our being, on some level we accept them because there is comfort in their familiarity and they simply make sense to us. The thoughts and beliefs become our identity and we then live our lives in a manner that fits these thoughts and beliefs.

When a child first begins therapy, the therapist typical asks the parent to describe the child. The information is important because it gives us a sense of how the child is going about their daily life. In order to communicate the person’s function, we must put them into words and/or make observations. Based on how they interact and/or the description we provide of them, the environment gives them a response. These responses and interactions can solidify beliefs about who they are as a person and how the world sees them. It can also create a list of dislikes and likes that categorize them into what experiences they are willing to have on a daily basis. For instance, a child may be described as very intelligent, but has trouble paying attention. Another child may be described as wanting to play with other children, but becomes aggressive when a peer plays with their toy. Another child is great a school, but falls apart at home. Depending on how others respond to these perspectives or interactions will on some level effect the child’s perception of themselves. If the intelligent child is getting in trouble for not paying attention, they may perceive themselves as inadequate and become disinterested in school with a potential label of being “lazy”. The child that becomes aggressive over his toys may begin to play the role of a bully. The child “holding themselves together” at school may develop a high level of anxiety with a potential label as a “worry-wart”. As a result, the adults in the child’s life uses all sorts of strategies to dissolve the issue at hand and the effectiveness of these strategies can vary from child to child.

Often times, these children have sensory processing disorder, which is impacting their ability to process sensory information, which in turn impacts their interactions within their environments. They develop coping mechanism or adaptive responses in an effort to function in their environment. Addressing sensory-motor issues can help the child to better receive, integrate, and modulate sensory information. Research indicates that if organized sensory input is provided consistently over a period of time, that it will create changes to the nervous system, which will improve daily interaction and performance for the child.

Parents, families, teachers, and peers have a pre-established perception of the child. Although the child may be experiencing neurological changes, they too continue to have established thoughts forms and beliefs from their past experiences. It would be beneficial to point out the positive changes to your child. It would also be beneficial to have your child try activities that were perhaps not so successful in the past. They may find that they are enjoying activities that were originally aversive. It is also critical that the adults involved with your child recognize these changes and help them to manage any residual behavioral responses. It is important to consider re-establishing new thought forms in regards to how you interact with your child. Do you find yourself describing your child to others in the same way even though they are functioning differently? Do you need to adjust how you engage with them? Do you need to modify the level of support you are giving them? Are you expanding their opportunities for experiences? Now that they appear to be more organized, what are the next skills to develop and focus on? How can you support them while engaging with their peers?

Lastly, whether you are a therapist, teacher, or parent, we must also look at are own selves. Healthy families and communities all originate from a healthy individual. Identifying what labels you or the world have place on you, may help you to understand your own functioning, which in turn can allow you to address established beliefs that are no longer servicing you well. This can give you greater insight into your child and how you can better help them. We were all little infants, toddlers, and children at one point. Chances are your family wanted to the best for you and they wanted to you have a happy and meaningful life up to your last and final day. This concept of well-being is critical for all of us. By working on this for yourself, you can then model it for your child. That is why therapy is not just for your child. You as parents as well as other people in the community can also receive positive changes by being a part of the therapy process.

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The Therapeutic Experience

Building BlocksThere are some frequent questions that are brought up when your child needs therapy. The thought of therapy can leave the parents experiencing a variety of emotions, which we will touch upon is this conversation. For some parents, they come to find that their child has been diagnosed with a disability. For other parents, they feel a sense of frustration because they see their child has some difficulties that other may not feel are significant, but the parent feels are impacting the child’s self-esteem and their everyday functioning. So whether you are a parent that is hearing that your child needs therapy services or whether you are a parent desperately looking for a therapist that can help identify and address the concerns you are seeing in your child, initiating therapy services can create many anxieties. What are the long-term needs look like for your child? Who will help you help your child? How will these needs affect your family? How will these needs affect your ability to work? Who will support you? The beginning stages of this process can be quite overwhelming, but surrounding your child and your family with knowledgeable, caring, and committed persons can make all the difference.

The therapeutic experience is determined by its purpose and participation. It about learning your child and his/her needs and determining a plan in a calm, well thought out manner. It is about gathering therapeutic tools that will empower you as parents. This can include direct participation in therapy, reading a recommended book, utilizing a home program, or becoming part of a support group. It is about your child engaging in therapeutic experiences that give them a better sense of themselves, which in turn creates more purposeful interactions in their functional settings.

Therapy is most beneficial when all parties are working in the best interest of your child. It is human nature for us to pass judgments on the way we approach difficulties or come up with solutions. When there are a variety of professionals in your family’s life, it is important for all of us to work towards solutions in a collaborative manner. The more balance there is between approaches, the better quality of the efforts.

Often times, children are getting services from a variety of sources and the professionals may not realize your other commitments. You may also have other family obligations such as activities for siblings or work commitments. As you begin to gather professional recommendations, there are many factors that need to be considered. The recommendations are based on the assessment of the child’s level of functioning and your concerns. As parents, you are the driving force behind determining what your child needs. Deciding to participate in therapy and for how long are difficult decisions to make. The therapy should be family-directed and should focus on the areas that you find to be of concern. It is important that you keep an open communication during the therapy process to ensure that your family’s needs are being met and that your child is benefiting from the selected therapies.

Throughout the therapy experience, progress on goals and annual re-evaluations will help to determine modifications that need to be made in your child’s plan of care. Changes can also be made at any time, but establishing times to closely examine the plan of care will ensure that your child’s needs are being met. In addition, evaluations are important because they give us a baseline to determine if your child’s skills are falling within a range similar to his/her peers. The scores will help the professional determine areas of concern including concerns that may not have been noticed by observation.

Therapy can be a wonderful and beneficial experience. It can empower you as a parent by providing you with the knowledge and tools to help your child succeed. Therapy can help your child to develop a better sense of themselves and help them to foster their strengths while supporting them through their difficulties. Therapy can help them to develop needed skills to participate in daily activities. My goal is to create a positive and beneficial therapeutic experience for your family.

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