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Understanding the paradigm that people perceive the world differently is vital for working successfully with people on the autism spectrum.
The Diagnostic and Statistician’s Manual of Mental Disorders (DSM IV-TR, American Psychological Association, 2000) and most other sources look at communication, social interaction, as well as repetitive motions and restricted interests as the main areas of impairment in people with autism. The DSM IV-TR and many other references miss or downplay the important aspect of sensory integration dysfunction in people with autism. Understanding the paradigm that people perceive the world differently is vital for working successfully with people on the autism spectrum.
Sensory Integration and Sensory Integration Dysfunction
What is sensory integration? Sensory integration is "the neurological process of organizing the information we get from our bodies and from the world around us for use in daily life" (Kranowitz, 1998, p. 42). "Sensory integration dysfunction is the inability to process information received through the senses" (p. 8).
In plain English this means that just about everyone on the autism spectrum that I have met has a large variance from what might be considered as typical in how they sense and perceive the world. Some of the senses may be turned up “too high,” others are “too low,” and there may be a substantial amount of distortion in the data that is received through the senses.
Sensory Variations
The Outer Senses
Most people are aware of the five senses of touch, hearing, taste, smell, and touch.
A theory mentioned in Temple Grandin’s book (1995) is that people on the autism spectrum are born with too many, yet immature nerve endings. This theory gives a possible explanation as to why most people with autism experience problems with sensory integration. Some or all of the five senses may be hyper-sensitive whereas others may be hypo-sensitive. In addition, the data received from these senses may also be distorted. Anything that overloads one or more of the senses is a sensory violation to me.
The Inner Senses
The vestibular and proprioceptive senses are often referred to as the hidden or inner senses. The vestibular sense "helps with movement, posture, vision, balance, and coordination of both sides of the body” (Myles, Cook, Miller, Rinner & Robbins, 2000, p. 28). Proprioception informs a person as to where their body parts are in space and the appropriate amount of force needed to perform an activity such as picking up a glass of milk. Like with the more commonly known outer senses, hyper and hypo sensitivities as well as distortions with these two inner senses cause challenges for those on the autism spectrum.
Brave Little Kids
I was in a room with a friend that has Asperger Syndrome. Suddenly, I noticed her eyes vibrating back and forth - at the same frequency of the fluorescent lights in the ceiling. For all intents and purposes given her perception, she was in a room with a strobe light. She, like many people on the autism spectrum, perceives the cycling of the florescent lights. Most non-spectrum people perceive only light flickering when the bulb is very old and needs to be replaced.
Moments later she asks “can we get out of here?” and we quickly leave. Fortunately she has the communication skills needed to call attention to her predicament and thus modify her surroundings by leaving the room.
What about the 8-year old child in grade school? He too feels as if he is sitting next to a strobe light. How can this child be expected to quietly listen to the instructor and fill out a work sheet when he is continually assaulted with what would be a strobe light to most other people?
Suppose he were to get up out of his seat to turn off the lights. His teacher, seeing him out of his seat (once again), tells him to sit down. This goes on a few more times and the child is finally sent to the principal’s office for punishment.
Let’s consider the 4-year old nonverbal child. She too is in a room, effectively with a strobe light and this is overwhelming her visual sense. Unfortunately, she lacks the cognitive and communicative tools to tell the teacher that the lights are bothering her. It is likely that she has not realized the cause and effect between the light switch and turning off the lights. What do you get? A good old-fashioned tantrum results.
I have only considered one of the many possibilities where a behavior such as getting out of one’s seat is caused by an overload of the senses. It is important to realize that when faced with a challenging behavior one must at least consider the possibility that the person’s actions are based on a sensory overload condition.
References
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders of the American Psychiatric Association (4th. ed. Rev.). Washington, DC: Author.
Kranowitz, C. 1998. The Out of Sync Child: Recognizing and coping with sensory integration dysfunction. New York: Skylight Press.
Grandin, T. (1995). Thinking in Pictures: And other reports from my life with autism. New York: Doubleday.
Smith-Myles, B., Cook, K., Miller, N., Rinner, L., & Robbins, L. (2000). Asperger Syndrome and Sensory Issues: Practical solutions for making sense of the world. Shawnee Mission, KS: Autism Asperger Publishing Company.
About the Author
Diagnosed with "Atypical Development with strong autistic tendencies" Stephen Shore was viewed as "too sick" to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers, and others, Stephen Shore is now completing his doctoral degree in special education at Boston University with a focus on helping people on the autism spectrum develop their capacities to the fullest extent possible.
In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to relationships, employment, and disclosure as discussed in his book Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome; which is available through his website, www.autismasperger.info.
He serves on the board of the Autism Society of America, Unlocking Autism, Autism Services Association of Massachusetts, and the Asperger Syndrome Coalition of the United States. He is the board president of the Asperger’s Association of New England.
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It was normal pregnancy. At age 31, I was overjoyed to be having my fourth child. My daughters were 5, 7, and 9; and on Dec 6, 1977 we were blessed with a beautiful little girl. She was so tiny and had huge dark eyes and a head full of black hair, which thrilled her three red-headed older sisters. Never was there a thought that the difference in her appearance would carry over to the difference in her development and her behaviors.
I have been asked when I knew something was different ... and if I’m to be truly honest I would say, by three months of age. She was an unusually good baby. She didn’t establish eye contact, nor did she coo and babble. Where her sisters were sitting alone at 6 months, she didn’t sit alone until 9 months. They all walked between 9 and 11 months and she was 17 months before she walked. And she didn’t speak. At two, she would keep perfect beat to a song on the radio. I had her tested at age 3 for hearing, speech and language and what I was told that she was just different from her sisters and that I was expecting too much from her. We now know that if she were diagnosed today, she would be classified as apraxic. Her pediatrician would not hear that there could be anything wrong with her ... it was me that had the problem.
We sent her to preschool and although it was obvious that there was something not right, she moved from preschool to kindergarten and onward with each year bringing new struggles. In kindergarten, although she had poor social skills, she shocked everyone with her ability to read. She was difficult to understand and did not engage in normal conversation. By second grade she was an advanced reader and was reading the classics. She couldn’t dress herself, constantly sat in a pile of disarray, and was lagging in social skills. That same year she sat down at our piano and pounded out in concert style “Chariots of Fire” by ear because she heard it on TV. Later she began to show an incredible ability to memorize and could instantly read the credits of a TV show or movie and tell you who was in that program.
Year by year we struggled. We were told she was lazy; spoiled - you name it. Through this all she did not make one friendship and her behaviors became very inappropriate. She had strange rituals she performed. She was horribly adverse to change. In second grade we were referred to a different pediatrician who decided to do and EEG and found she was having atypical absence seizures. Now we had a diagnosis and everyone was satisfied. Except me.
It amazes me now, but we managed to get through the grade school years. It wasn’t without constant intervention and pleading on my part for alternative programs. And never a referral for speech. In ninth grade, with no special education in place, after all she was so highly intelligent, I reached my boiling point. I found a psychologist, a psychiatrist and special education professionals to begin a series of testing. All three independent professionals came up with the same diagnosis: Pervasive Developmental Delay with autistic behaviors. Since then I truly believe she is Asperger Syndrome. From that point on we began to receive services.
She graduated from High School (not without incident). She took voice lessons and sang solos for many school events.
She is now working at a restaurant on Fridays managing the salad bar. She also works part-time at the public library shelving books. She has the entire library memorized and is a walking card catalog. She can do her job with proficiency ... she just can not organize herself to arrive on time without help. She does not drive a car. She is beautiful and people are drawn to her sweet and mild disposition.
Although she has accomplished many educational milestones along the way, she still appears to be a child. At age 24, she looks like 14. She has been totally dependent on me for many things. She has a beautiful singing voice and sings in two choirs. She is also in a bell choir. She reads for the local Head Start program. The thought of her living on her own never entered my mind until several months ago when my daughters approached me. “What if I were no longer around, how would she survive?” “Did I want be to part of the choosing or did I want them to make the decision when that time comes?”
What I realized was that I had advocated for this child since she was born. I fought for services and programs for her. Why was I not willing to fight for her in adulthood? I am a 55 year old mom in good health not wanting to accept the fact that maybe I would not always be around to care for my daughter. It was so much easier to not think about the future and just let her live in her room and take care of her as a child.
With prayer and every ounce of courage I could gather, I called her case worker and suggested that we begin searching for programs for independent living. She came back with several options. What I thought would be good would be an apartment sponsored by “Homes for Independent Living” with several other girls her age. An apartment became available and we took her to look.
She chose an apartment in a housing complex for the elderly. She loves the elderly...they are quiet and do not demand her to live up to any social standards.
I knew as we looked that she was frightened, but because of the encouragement of her older sisters and myself, she agreed to try it. As the time approached I became more and more frightened and unsure of my decision to proceed with this plan.
We found furniture and over a week’s time moved things into the apartment. The last thing we moved was her bed and dresser and for two full days she hardly spoke. She did not eat much of anything for a week and she walked around with fear in her eyes but determination to do it.
On Easter Sunday, she decided it was time to move. She did not cry when I dropped her off with her last box of belongings ... she hugged me and I left. As I walked away I cried. I cried all night and into the next day. Thoughts raced through my mind of comments made to my by well meaning friends concerned that this environment was not right for her. It is not right of us, but we do not have autism. It is right for her because she chose it.
The first week she called me often, but never once said she wanted to come back. Last night I took her shopping and I asked her, "What if I told you I wanted you to come home?" Her response was, "I wouldn’t do it, I have my own home now and I love it."
As I look back at the difficulty in convincing her that she could live on her own, the feeling I experienced about her "needing" me for life, the criticism I encountered from friends and family at my "putting her out" was all a necessary path I had to travel to this journey toward independence for both of us.
My daughter was born in a time when Autism was not understood. My daughter did not have early intervention. My daughter did not receive the sensory stimulation she craved. But my daughter is an adult and she is living on her own and functioning at a high level. I just can’t imagine how far she could have gone had we had the diagnosis earlier and all the interventions available that are in place today.
Encouraging independent living for my daughter with autism was the most difficult thing I have ever had to do in my life. Looking at her now and seeing her as an adult with autism rather than a child with autism, living independently, making decisions, doing for herself, is a sight to behold. I have had to fight for her. I have been her voice. I have been her caretaker and her protector. Giving that up and letting her go on to independence and adulthood has not been easy. Had it not been for my support system and those truly understanding what it means to be autistic, I could never have done it. I would have kept her dependent and limited and would have kept her from living to her full potential.
In the process I discovered that there are many services in place to make independent living successful. I do not have to be the one to DO any more. Others can do what I did and she will learn to do more and more for herself. She finally has her wings. I am excited to watch her fly.
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As the Director of Special Education for CESA #7, a consortium of 37 school districts in northeast Wisconsin, I have seen my share of conflicts and disputes between concerned parents of children with disabilities and dedicated special education teachers. I’m convinced that such conflicts are inevitable, as they are bi product of human relationships. It is especially pronounced in such long term relationships that are established by compulsory education laws.
There are several approaches in dealing with such disputes. I have leaned over the past 24 years of special education administration that an amicable and collaborative approach results in a win-win situation for both parties. On the other hand, in the adversarial, litigious and punitive approach such as in a ‘due process hearing’, there are no winners. Even though a hearing officer may declare one party a winner and the other a loser, both parties (and the child) lose. The two parties lose the opportunity to develop a long term collaborative partnership that IS ESSENTIAL in order to meet the child’s utmost success in school.
The first attempt to resolve a special education dispute should be with the local school district director of special education and the district administrator. If the dispute is not resolved to the parties’ satisfaction, consider using the Wisconsin Special Education Mediation option. Here are seven (7) reasons why parents and schools should choose the mediation process:
1. The State Pays the Cost of Mediation. The special education mediation option is FREE to both parents and schools and is paid by the state. On the other hand, the estimated average cost of a due process hearing (an alternative system to resolve similar disputes in which both parties are represented by attorneys arguing their case before a hearing officer) is about $40,000.
2. A Speedy Process. Unlike the due process hearing timeline that may extend over the course of many months and beyond, the mediation process may be completed within 20 to 30 days. The mediation process is most effective in the early stages of a dispute, before emotions / feelings of frustration harden on both sides.
3. Collaborative Process. A parent and a school administrator who recently participated in their first mediation session remarked in disbelief to each other, ". . . People were leaving the mediation session actually smiling at each other . . ." Since the mediation agreement is not imposed by a third party but, rather, is a result of the two parties crafting a joint resolution with the assistance of the mediator, it is a win-win situation. Most importantly, parents and schools who experience collaboration in the mediation session, tend to use the new collaborative framework to address and resolve future emerging disputes among themselves.
4. Forward Looking. Unlike the due process hearing provision, the mediation option does not look back to the past searching for "who to blame". Instead, the mediation option looks into the future in terms of (1) identifying the child’s needs, (2) how to meet the child’s needs, and (3) who will meet these needs in the future. Consequently, the resulting non-adversarial atmosphere at the mediation session is one of "let’s role up the sleeves and get to work" in order to establish a new plan for the future.
5. Private/Confidential. Mediation is private and confidential and provides a "safe haven" atmosphere for parties to openly discuss any issue, knowing it will remain private. No records are kept or shared in any subsequent legal proceeding. The mediator, the parties, and their attorneys agree that they are all strictly prohibited from revealing to anyone, including a judge, administrative hearing officer, or arbitrator, the content of any discussions which take place during the mediation process. (The Senate version of IDEA 97). According to state law (904.085), the agreement to mediate is a contract between parties agreeing to confidentiality.
6. Party-Driven. Both parties control the process. The mediation process unfolds to the "tune" of the two parties. The parties determine who the participants are, who will mediate, where the mediation session will take place, and what should be included in the final agreement. The mutually agreed upon resolutions will be more likely implemented and followed by the two parties over time. On the other hand, either party may stop the process at any time. The mediation option IS the empowerment of the two parties.
7. Creative Solutions. This process gives both parties the chance to suggest many different ways to resolve their dispute. With both parties contributing to the resolution/agreement, they will both feel as if the final agreement fits both of their needs. It is a win-win situation. No one party feels like a looser. The litigious due process provision narrows the decisions that can be made in such a process: one side is declared a winner, and the other side is declared a loser. The loser will need to provide certain services as determined by the hearing officer. For more information on the Wisconsin Special Education Mediation System (WSEMS), contact your local school district or WSEMS at 414-288-1425.
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