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Community based instruction is a very beneficial form of teaching as it allows transfer of learned/acquired skills within a natural environment. It is much more meaningful for a student to practice using their speech/language skills in the community rather than the artificial environment of a therapy room. I don't adovcate complete abolishment of individual sessions in the academic setting, rather I see them as a place to practice and perfect speech/language skills that are to later be used on a functional basis in all environments. It is the generalization of recently acquired skills that can best be practiced during community based instruction.
Courtesy words such as "please" and "thank you" become more powerful when used as an interaction between a student and clerk, or some other helpful individual they may encounter. It is especially encouraging to students who are overcoming a long period of being non-verbal when that first interaction occurs that does not require repetition or interpretation by a staff member.
Community based instruction often allows multiple skills to be practiced in a relatively fun and non-threatening manner for the student. Speech/language is practiced every time the student attempts to communicate whether it be a verbal interaction, a simple gesture/sign, the use of augmentative/alternative communication device or eye contact. Many students who refuse to use their communication boards in the school or home environments readily rely on these devices to meet their needs in the community environment. Students may use their boards to indicate choice of locations that they'd like to visit, thus allowing them to share their wants in a functional manner. They may use their board to indicate needing or wanting to make a purchase. Eventually they independently use their communication system with strangers and are able to make themselves understood. Success!
Community based instruction allows the student to practice dealing with the unexpected. When doing therapy in a structured school environment, the student learns to expect a certain type of response or interaction from their therapist. When in the community, the student gets to practice the same interactions but the response always varies. This variety of responses is more true-to-life than simulated situations in a therapeutic environment.
Community based instruction allows hands-on learning for such things as public transportation usage, handling of money, functional use of wallet or purse, public restroom usage, appropriate manners and communication skills. Of course, the learning is not limited to the short list given. Every student gains self-confidence and self esteem as they practice their skills, and require less and less assistance as their program progresses. Community based instruction has definitely been a positive addition to my speech/language programs.
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The summer before our son with autism entered kindergarten, he was enrolled in a movement skills group with several other children. One of the children was a high-functioning child with Down's Syndrome, also about to enter kindergarten, and I had gotten to know his mom during our time spent sitting in the waiting room. One day we were discussing M-teams and school issues, and this woman said, "I don't want my son to be labeled!" Since the boy had the facial markers typical of Down's Syndrome, I was puzzled, but decided that I might be treading into dangerous territory here, so I cautiously asked "What do you mean?" "Well," she said, "I'm trying to have him classified as LD." I knew from my experience as a reading teacher that a learning disability was defined as achieving two or more years below grade level in an area such as math or reading despite average or above average intelligence. Yet this woman, whose child had already been labeled by a power greater than ourselves, was ready to do battle with the school system to avoid having her child labeled as retarded. She wanted teachers to look at her son as an individual, and not as part of an undifferentiated group--children with Down's Syndrome. To me it was stunning proof of the power of labels in our lives.
I empathized with her, because I had done battle with labels myself. When our son was first diagnosed, I went along with the autism diagnosis, but I did not really accept it in my heart for a long time. Oh, I did all the right things, taking Alex to speech, physical, and occupational therapy, enrolling him in early childhood, and all of that. But deep down, I felt that if I accepted it, then it would be true, and I wanted it not to be true more than anything! On an intellectual level, I knew that this was ridiculous; Alex's condition was what it was no matter what I thought about it. And yet, I couldn't help feeling that my acceptance would condemn my son to a certain kind of life. The moment of acceptance finally came when a neurologist, looking at the improvements in his language and behavior during the preceding six months, concluded that Alex definitely did not have autism. My inner response to that statement was to think, "But he does!" However, at that time I was not sure enough of myself to argue with a doctor, so I kept my moment of truth to myself.
Every parent of any child with special needs has to go through the "work" of accepting the diagnosis in his own mind. This takes time, and the process can't be rushed. I generally recommend that the parents do some reading in order to clarify things in their own minds. However, it is not necessary for parents to accept the "A" word in order to start getting help for their child. In fact, I usually tell parents to start some kind of intervention immediately, because they will generally see an improvement right away, and that gives them hope. One of the biggest mental hurdles in accepting the autism diagnosis is the fear that autism equals no hope; that your child is condemned by the label of autism to having a certain kind of life, and that there's nothing you can do about it. The reading and the intervention, and talking with other parents of children with autism, will break down this fear. The parents begin to realize that they can significantly affect the level of their child's functioning, but they need to learn all that they can about autism and treatments in order to do it. The effect of this realization is liberating; most parents plunge into learning all they can about autism and the various treatments available, and this tends to rouse parents out of the sadness that generally accompanies the diagnosis.
Although it is a relief for parents to realize that they can take action and that these actions can improve their child's functioning, there is still a whole host of issues that the parents must work through. Sometimes one parent does not accept the label, or blames the other parent (if you had disciplined him right, he'd be fine!). The behavior of the child in public can be embarassing for parents and siblings. An autism diagnosis places a marriage under great stress, and unfortunately, some don't survive. After talking to many parents over many years, I would conclude that fathers usually have a harder time accepting the diagnosis, although that was not true in my own family. Since it is still true for most couples that the woman does more of the child care, the mom usually sees more evidence on a daily basis that her child truly is behaving differently than other same-age peers. But the capacity for denial is not a sex-linked characteristic, and I seemed to have lots more of it than my husband!
People generally talk about denial as if it were a bad thing. Having been there myself, I have come to have more respect for it. Denial is a protective mechanism, shielding us from a reality that is too painful to bear just yet. The only time that denial becomes a problem in this situation is if the parent prevents the child from getting help. This problem can be gently worked around by pointing out to the parent in denial that there are specific developmental delays that must be remediated now, regardless of any label. The benefits of early intervention are convincing and well-documented. The parents may eventually accept the autism diagnosis--most do--but the important thing is for the child to get help.
Schools and Labels--The Elephant in the Room that Nobody Talks About
School districts must correctly label the child so that he qualifies for the appropriate services, and many parents are terrified of this labeling, like the mother of the child with Down's Syndrome at the beginning of this article. I would first like to assure all parents of newly-diagnosed children that the word "autism" will not be tatooed on your child's forehead! In other words, "everyone" will not know. Many parents are concerned about whether other children and their parents will find out that their child has autism. But in some circumstances, it might be beneficial for everyone concerned if they did know. If your child's behavior is clearly different and unusual, what do you want the other children in the class (and their parents) to think is the explanation for this behavior? It might be better to explain it as autism and to explain what autism is rather than to allow people's imaginations to run wild. If your child is different, people will try to account for these differences out of their own experiences, such as, "this kid is crazy, obnoxious, weird, hasn't been disciplined, spoiled," etc. You can't stop people from thinking these things, unless you tell them the truth. I know some parents who have gone into their child's class every year and talked about autism to the class. They feel that it has cut down on the teasing and the misunderstandings. Some parents have the autism specialist do the speaking instead of doing it themselves.
This open approach is not right for every child. If the child's behavior is barely distinguishable from the behavior of typical children, telling the class that the child has autism might be confusing and lead to more teasing rather than less. Parents will have to decide for themselves about this issue, but at least they can decide. It is solely up to the parents whether anyone other than the professionals working with the child know that the child has autism. At a support group meeting recently, a parent asked, "Don't teachers talk about disabilities with the students?" I replied, "No, they don't, because that information is confidential. Children with disabilities are the elephant in the room that nobody talks about." The children can see that some students in the class are different, but nobody ever tells them why. The teacher can't do this unless the parents give permission.
The professionals who work with your child will know that he has autism, but they will not always understand what that means (except that it scares the heck out of them!). The Autism Society has been working really hard to improve the level of knowledge of education professionals about autism, and much progress has been made. But parents in small school districts in rural areas often have difficulty with school personnel who are not knowledgeable about autism, and are not always interested in learning. My son attends school in Madison, and is completely mainstreamed. Every year I approach a teacher that I feel will be a good fit for Alex and talk to her about the prospect of having him in her class the following year. I watch her facial expression. Most years, the look has been one of sheer terror at the use of the word "autism." Then I introduce her to Alex, she sees that he is just a kid, and then she relaxes. I always tell the teacher that there will be "normal" kids in the class who will give her far more trouble than Alex will, and every year they've told me that I was right! Most regular ed teachers do not know much about autism and have never had a kid with autism in class. But this is not a problem if the teacher is willing to learn. Whether the teacher is knowledgeable about autism or not, a parent still has to educate her about his child. Most parents are shocked at how involved they are expected to be with their special needs child's education, and many feel unprepared for this responsibility. But nobody on this earth knows your child better than you do, and the professionals who work with him need this knowledge that only you can give them.
If parents can't count on regular ed teachers knowing about autism, at least they can count on the special ed teachers knowing, can't they? Unfortunately, the answer is no. The training of special education professionals has become "specialized;" teachers can become certified in CD (cognitively disabled), LD (learning disabled) or ED (emotionally disturbed). There is no autism certification (at least, in Wisconsin), so we can't count on special ed teachers having taken even one course devoted exclusively to autism. So the parents who worry about what the autism label will mean to the education professionals who work with their child are usually worried about the wrong thing. Many educators simply don't know what it means at all, and that's what parents should be worrying about. (Editor's note: Wisconsin Statewide Autism Training Information)
Doctors and Labels
Many parents who bring their children to doctors for a diagnosis are confused by the labels that are used, like PDD and Asperger's Syndrome. I can't tell you how many times over the years I've gotten phone calls from parents who have said, "My child doesn't have autism, he has PDD (or Asperger's)." Then the unpleasant duty of explaining that PDD and Asperger's are autism falls to me. I do it, but I mightily resent having to! I think that PDD is the worst, because the term is deceptively self-explanatory. When a doctor tells parents that their child has Pervasive Developmental Delays (or Disorder), and then, perhaps, asks them if they have any questions about it, most parents won't even ask. After all, why should they? They know what "pervasive" means, and they know what "developmental delays" are. Because they think that they know what the diagnosis means, most parents probably don't even think of asking the questions that would lead them to seek information about autism. Sometimes this misunderstanding results in precious years of early intervention time being lost, which is truly tragic.
I feel strongly that any doctor who diagnoses a patient owes him and his family a thorough, up-to-date explanation of the diagnosis and treatment options available. If the doctor can't provide this personally, then he should refer the family to an organization such as the Autism Society of America, which can provide this information. All too often, neither one of these happens.
Much of this confusion could be avoided by both the medical profession and educators adopting the term, "autistic spectrum disorder." This term conveys all of the information that is important for families to know about this group of disorders. The word "autistic" tells parents what general topic to seek information about, and the word "spectrum" tells parents that there is a wide range in both the number of and the severity of the symptoms. So, if a doctor wanted to use a PDD diagnostic label because the child didn't have enough symptoms to qualify for the autism label, he could say, "Your child has PDD, which is an autistic spectrum disorder," and then could explain where on the spectrum that child's number and severity of symptoms placed him.
I feel that in order to eventually demystify and destigmatize this disorder, it would really help for everyone to use one name. I am not suggesting that we do away with all distinctions and subgroups, just that we use the umbrella term "autistic spectrum disorder." Labels are emotionally explosive, particularly for parents. Autism (sometimes I call
it the "A word") still carries a connotation for most people of severe symptoms and mental retardation. Autistic spectrum disorder introduces the notion that moderate to mild severity is also possible in this group of disorders, and that people who have this disorder may present quite differently depending on the number and severity of symptoms. This is a complex disorder that is difficult to explain; autistic spectrum disorder conveys some of that complexity, and that is a step in the right direction.
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1. When an autistic person doesn't do what is expected from him/her,before concluding that that person doesn't want to do it, or just shows bad will, one must always ask oneself first if the autistic person really understood what was demanded.
2. Second, having verified that the person really understands, one must verify that the person knows how to do what is expected from him/her.
3. After having checked that our expectation is well understood and that the person knows how to do it, then and only then can we conclude that the person doesn't want to do it.
4. It is then necessary for us to try to understand why. There is in general a relatively simple explanation. It is important to understand this refusal because it will help us better understand the person and hence better respect that person.
5. Once the reason for refusal is understood, depending upon the real importance of the expected activity, accept the refusal as a legitimate choice or else, try to convince the person of the importance of what we were expecting him/her to do.
This position is very important for us since very often an autistic person does not have the means to let us know of the difficulties he/she is facing with our demands. Very often the person does not know how to tell us "I do not understand what you want" nor "I don't know how to do what you are asking me to do," this is specifically the communication difficulty due to autism.
When we interpret too soon a lack of action as a refusal, we will insist directly, without realizing that it is useless to do so since the person does not understand or maybe does not know how to do what we are asking to do.
Such an attitude almost every time leads to a tantrum or to a greater isolation of the person.
Instead, we should try to use a language better adapted to the level of understanding and/or try to assess the capability of the person to accomplish what we have asked him/her to do.
By accepting that there is a communication handicap, we will respect the right of this person to be different. Accepting the right to be different, we give that person the possibility to progress and to use his/her potential strength to their best.
With these remarks in mind, the way we behave with our children who have autism should not differ from what we would do with others: respect for their preference within the limits of having them respect the ones of the people they live with.
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Actually, everybody holds down full time jobs, attends every autism conference, is politically active, subscribes to and reads at least three autism-related periodicals plus has an extensive library with all the latest and greatest tomes on autism (copies of all of which we have also donated to the school library), is a volunteer advocate for other families with autism, serves on the board of the local autism society and maintains their website, lectures internationally on Saturdays and spends all day Sunday doing something special with our non-autistic child.
We have perfect marriages and spotless houses and we never, ever lose hope or our tempers.
We are all versed in and have followed up with our children on dietary changes, supplements, pharmacology, AIT, Irlen lenses and vision therapy, and sensory integration including brushing.
We have all researched and custom tailored a blend of Lovaas (ABA) and Kaufman (Option/SonRise) programs, and have done fund-raising or recruited volunteers so that we can provide forty hours per week of 1:1 instructional programming for our autistic children.
Some of us are liars. :)
But seriously, I know some folks who are well read. I know some who are advocates. I know some who are politically active. I know some who have created supported living environments for autistic adults. I know some who work full time. I know some who create and oversee the administration of fantastic programs for their children. I know some who still have a life apart from autism. I have seen combinations of two or even three of the above. But never all of them. Even the greatest occasionally go through valleys where all they're doing is surviving from one day to the next, sometimes debating with gravity whether their child would be better off dead.
We all do what we can. Sometimes, nobody can do enough. Try to extend to yourself the same mercy you would have for a stranger.
Love and peace to you.
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In response to some recent discussions on transition issues, we would like to offer the following information and personal experiences which other families might find helpful. We would strongly suggest that before contracting for any assessment services or before allowing DVR or your school district to contract for services, you investigate the individual or firm you are proposing to hire. We made many mistakes in contracting for our first functional assessment and ended up with a report that was of little value to either us or the school district. Many of our mistakes could have been avoided. Do not base your decision on a telephone conversation, ask to see their work. If they use a standardized form to gather information, ask for a copy of the form. Ask to see several examples of their past reports (with identifying information removed, of course). If you want information that is not part of their standard assessment, ask to have the information included and confirm in writing. Look at several evaluators before you decide. The first one might look good, the next one might look fantastic in comparison. Contracting for an assessment that fits your needs can take a lot of discussion and involve many people. If your school district is doing the hiring, make sure the assessment you want is in fact the assessment they are contracting for. You
do not want to be basing your hiring decision on one assessment while your school district is only agreeing to pay for an abbreviated version. Written expectations are usually more valuable than informal agreements.
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Last night I had a dream. I dreamed I was driving along a winding coastal road. All of a sudden a beautiful boy dressed in black and carrying a violin case crossed the road in front of me, causing me to stop. I asked him where he was going, and if I could give him a lift. He recited his address, an address I'd never heard, and got in the back seat. I looked in the rearview mirror and a wave of panic rose in me at the sight of his composed angelic face, staring straight ahead. In spite of my unease, I knew that I had to help him find his way home. I began driving. Searching. I woke up, my heart racing.
My son. My beautiful son:
Tomorrow is your fifth birthday. My big boy. My child. Five years old! Dad and I are so very proud of you. We are madly in love with you, and we wouldn't want you to be any different than you are. You are one terrific kid. Very special. And it was exactly one year ago today that you were diagnosed autistic.
Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. "Yup, it's Autism, and it's never going to go away." I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist's office. It's one thing to harbour nagging suspicions; it's quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong.
As much as we love you, it's been a very difficult year for me and Dad. Who can prepare for such a thing? It has been a year filled with tears, grief, numbness, panic, desperation, fear, love, determination, and anger. A lot of anger. Anger at a family doctor who repeatedly dismissed my concerns about your development; anger at a medical system that put us on fourteen month long waiting lists, and after diagnosing you, ushered us out the door with nothing more than a wave and a "good luck"; anger that your neurological disorder is shrouded in mystery and stigma and the medical community offers no treatment.
I'm angry that I had to spend months reading, researching, desperately looking for information on how to help you with NO ONE to guide me; I wish we lived closer to my family; I wish there was something or someone to blame for this; I feel anger toward friends who have effortlessly developing children and still dare to complain; I'm angry at having been given this huge responsibility!; Angry because I can never rest!; and yes, I'm angry at you for not giving me back things like hugs and kisses--my dear, it's very hard to keep giving when I don't get a lot back in return. Please try to understand. I know you can't help it, but that doesn't make it easier.
But mostly, I'm angry at myself. Angry and guilty for not having recognised the signs earlier, because early diagnosis and intervention have proven to increase chances of full integration into society. I wish I hadn't hushed my concerns. I'm sorry. I'm so sorry. For not listening to myself. And for not listening to what you were telling me. And when you were diagnosed, I'm sorry for being sad. I want you to know that I am not sad about you, or that you are my son. Never. It's the world: I'm worried about you in this world.
Autism. It conjures images of a solitary, mute, rocking child. That is not you; it never was. But when I think back, and look at your baby book, I recognise what I now know to be the early signs. You screamed at the sound of tin foil being ripped. You stiffened when I held you. Your eye contact was not good. Instead of pushing toy cars around the living room, you turned them over and spun the wheels.
Numbers, letters, and shapes were your favourite playthings. At barely two years of age you pointed to a small eight-sided window and said, "octagon." Before the age of three you were spelling words with blocks. I recall being in the car and hearing you mutter,"three, one, eighteen. That spells car." It took me a while to figure out that what you had done was assign the letters of the alphabet numbers in your head, and were spelling words with the assigned numbers.
And your memory. Uncanny. Eerie. You sing songs after hearing them once. You remember where you dropped an elastic three years ago. You remember the minutest detail, and forget nothing. And yet you show little interest in playing with other children. Kids are loud; they move around a lot; they're unpredictable. Not only must it be an assault to your oversensitive senses, but you don't know the rules to that game; the steps to that dance. You don't know how to make a friend. You don't know how to play.
Sometimes your literal mind offers up funny, poetic insights. "Mom, the scissors are clapping." "Mom, can you put your headache away?" Birds dance in the air, tummies cry, and "the gate is broke--it has no money in its pockets."
Dad and I celebrate your uniqueness. But will the world? Will the kids in school call you a computer with no feelings? A robot, to be turned on in the morning and off at night? Will you ever be invited to a sleepover? Will you learn to be a friend? Will you ever hug me and say, "I love you Mom." On good days I have faith that the world will be gentle. On bad days I just want to hold you in my arms and shelter you. My mysterious child in black, what is the road you're walking down? And where are you bound?
Tomorrow you turn five. We are so very proud of you. You are working hard to learn the life skills you are going to need. We love you. And we will do everything in our power to help you reach your full potential and be the happiest person you can be. And while we're busy teaching you the ways of this world, you can teach us a lesson or two about love, patience, commitment, and beauty. Ok?
Happy Birthday son. And thanks for choosing our road to walk across.
Love, Mom
Jennifer Overton is a Halifax actor and writer. She also teaches drama at Mount Saint Vincent University. She is the proud mom of a five year old autistic spectrum son. This article was first aired on CBC Radio's This Morning program.
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How well a child is able to sleep affects the way that child develops. Many behavioural problems in children such as hyperactivity, irritability and tantrums seem to correlate highly with children's sleep problems. Unfortunately, sleep problems appear to be quite common in children with autism. In a recent survey study carried out by the Developmental Disorders/Autism Program at the University of Michigan Medical Center in Ann Arbor, Michigan, parents of 226 children (181 boys and 45 girls) with autism completed a questionnaire which addressed quality and quantity of sleep, continuity in sleep, frequency and duration of wakefulness, restlessness, changes in sleep patterns or behaviours, and daytime sleepiness and alertness.
Of the 226 children, about 48 percent had difficulty falling asleep, about 56 percent woke up in the middle of the night one to three nights a week and about 20 percent woke up often (four to six nights a week). When awakening in the early morning, approximately 43 percent had difficulty returning to sleep. About 31 percent of the children had daytime sleepiness. When the severity of the sleep problem is classified as No Problem, Mild, Moderate and Severe (including all of the questionnaire's 'criteria' of sleep disorders such as difficulties in getting to bed and falling asleep, waking up often, unable to go back to sleep when awakened, irregular and broken amounts of sleep, and sleepiness during the day), about 10 percent of the children were considered as having severe sleep problems and about 22 percent as having moderate sleep problems.
Reversed sleep pattern
It appears that some children with autism need a much longer time to settle down for sleep and/or need less sleep than most normal children. A few children with autism have a complete reversed sleep pattern, that is, they sleep during the day and wake during the night. These children tend to keep the whole family awake in the night because of their unusal sleep problems. After a while, these children's sleep problems, if unsolved, can cause both physical and mental stress in other family members which in turn would seriously compromise the quality of care for the child with autism.
Changing the sleep cycle
The key to solving the sleep problem caused by reversed sleep pattern is to change the sleep cycle through a well planned regimen. In children who have difficulty in settling down at bedtime due to taking a stimulant medication (e.g., Ritalin) in late afternoon or early evening, an adjustment of the time giving the medication or a change to an alternative medication should be considered. Behavioural modifcation programs (for example using simple incentives and being firm and consistent) should be tried in children who tend to want to stay up late to read, watch TV or play.
If behavioural intervention doesn't work, melatonin may be the drug of first choice. Some autistic children may not respond to melatonin, but they may respond to antihistamines such as diphenhydramine and hydroxyzine, or to Clonidine (Catapres). In other more severe cases, antidepressants such as imipramine (Tofranil) or trazodone (Desyrel) may be needed. In children
who tend to wake one or more times in the middle of the night and have difficulty returning to sleep, melatonin or trazodone may be helpful. My experience has given me confidence that many of these autistic children's sleep problems can be treated with a high success rate.
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