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"Dear Family and Friends:" was written for the purpose of it being sent to relatives and hosts of holiday gatherings who might need a crash course in what to expect from their guest with autism. Article reprinted by permission of editor/author, Viki Gayhardt.
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.
As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD).
Autism/PDD is a neuro-developmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn't understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you -- I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people -- I just have to get up and move about.
Please don't hold up your meal for me -- go on without me and my parents will handle the situation the best way they know. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem!
Think of all the senses involved with eating: sight, smell, taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky -- I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired. Don't be disappointed If mommy hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable!
Temple Grandin, a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.
When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!)
Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things -- just please be patient with me and understanding of how I have to cope ... mom and dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "Self regulation," or "stimming'. I might rock, hum, flick my fingers in my face, flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this "perseverating" which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable place and join your hard-to-figure-out-world.
Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!). It hurts my parents' feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, Sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies but it's very hard work for me to conform.
If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow tippy rules. I am a unique person -- an interesting person. I will find my place at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes! Please pass this along to families you feel may benefit from it ... it has already helped us this past Thanksgiving.
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Seclusion and restraints are drastic measures that should only be used if there is no other way to keep an individual safe. Many individuals find being put into seclusion and/or restraints to be extremely frightening, disrespectful and traumatic. Improper use can also lead to serious injury and even death.
The goal of mental health care providers should be to create environments which are seclusion and restraint free. Fortunately, in Wisconsin many providers are taking steps to significantly reduce the use of these approaches to control behavior.
The law creates a framework governing the use of seclusion and restraints. However, the extent of their use also depends on the environment in the facility and the knowledge and attitudes of staff. It is critical that staff know their patients well and understand what tends to upset them and to calm them. Staff must also be trained in a wide variety of approaches to helping a person control behavior that is harmful or getting out of control.
Too often seclusion and/or restraints are used because staff are not knowledgeable about or comfortable with other approaches. Leadership in a facility must also have the goal of reducing seclusion and restraint use and must develop an atmosphere, as well as policies and procedures, that strongly discourages their use and promotes more positive methods of patient and staff interactions.
There are several laws that govern seclusion and restraint use. New standards developed by the federal Health Care Financing Administration (HCFA) govern their use in hospitals that are certified to receive funding from Medical Assistance. In addition, the Wisconsin patient rights law, Section 51.61 of the Wisconsin Statutes, governs their use in facilities and programs providing services for persons with mental illness, developmental disabilities or substance abuse. This may include hospitals, residental treatment centers for children, group homes, nursing homes, etc. Various facility licensing codes also contain provisions that govern seclusion and restraint use. Thus, the area is somewhat complex and one needs to check carefully about which law governs the particular facility where seclusion is being used.
Most seclusion and/or restraint use takes place in hospitals. Thus, some discussion of the applicable law may be helpful. Under the federal HCFA standards restraint includes both medications to control behavior as well as mechanical restraints. Seclusion and/or restraint used to control behavior may be used only in emergency situations when necessary to ensure the patient's physical safety and less restrictive interventions have been determined to be ineffective. It must be ended at the earliest possible time. It must be ordered by a physician or other licensed practitioner permitted under state law to order seclusion and/or restraint.
In Wisconsin licensed psychologists can order seclusion use. It may also be initiated by other trained staff, but the physcian or psychologist must see the patient and evaluate the need within one hour. Orders may last for only one hour for patients under 9; two hours for patients age 9-17; and four hours for adults. Orders can be renewed for up to 24 hours.
The Wisconsin patient rights law is less stringent in its requirements. Thus, hospitals certified to receive Medical Assistance (which includes most hospitals in the state) must follow the more specific federal HCFA requirements. However, the Wisconsin law does require that facilities develop policies that ensure that the dignity of the person is protected, safety is ensured, and there is regular, frequent monitoring by trained staff to care for bodily needs as may be required.
The HCFA requirements are enforced by the state Bureau of Quality Assurance (BQA) in the Wisconsin Department of Health and Family Services. The Wisconsin patient rights law may be enforced by filing a grievance with the facility or by complaining to BQA. Complaints regarding improper use of seclusion and/or restraints are also a high priority for the Wisconsin Coalition for Advocacy. Individuals or families may call the Wisconsin Coalition for Advocacy for assistance: Madison office: 608-267-0214 or 80-928-8778. Milwaukee office: 414-342-8700 or 800-708-3034
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In this holiday season we often give gifts to those in our lives that have done something for our families or us. I realize that I have neglected a whole group of people that have done very important, wonderful things for our family and our son David. I call this group of people "The Parents that have gone before me." These are the parents that fought to get their children an education in the public schools. These are the parents that worked to pass Individuals with Disabilities Education Act so school districts are mandated to educate children with special needs. I think of the parents that originally appealed to politicians to get funding for Early Intervention and Birth to Three. I think of those parents that raised their children to be a part of their community even though there were no services to support their efforts. I marvel at the effort and sustained energy it took for parents to get funding for residential programs for their adult children. The time and energy this must have taken, especially in a time when there were no respite services and many children with disabilities didn't attend school. I'm not talking about a time so long ago. Much of this has happened in my lifetime (the last 30-35 years.)
How do I thank these people? I thank them by continuing the work they started. I thank them by making sure that I advocate not just for my child but also for all individuals with disabilities. I make sure that when they are no longer able, I will advocate so their adult children continue to have homes in the communities. When will I thank them? Every time I benefit from their efforts - I send my child off to school, or use respite services, or send him to camp, or feel him welcomed into the community. I will thank them. by using my vote to elect into office those politicians that support us and vote out those that cut needed funding. I will educate myself whom these individuals are. I will use my checkbook to support businesses that provide supported employment to people with disabilities. I will support agencies and organizations that lobby in the state and federal government. When I tell myself that I have no time, I will remember those families that did this without any support.
Now is a critical time in advocating for not just our children but for all people with disabilities. The political climate is not on our side and funding is being cut for many programs. If things continue in the current trend, there will be no residential options for our children, not even group homes. When the Department of Vocational Rehabilitation says that it doesn't have money to continue serving it's current clients then what will happen when our children need their services? Individuals with Disabilities Education Act is constantly in jeopardy. Get to know your county executive, get to know your state and national politicians, speak up - so we don't fail The Parents that have Gone Before Us!
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