Frequently Asked Questions: Autism
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1. What exactly is "autism"? What happens? At what age do you see Autistic behavior start to happen? My daughter is 22 months old and is not talking. She is getting speech therapy, but I am worried that she has a bigger problem. Please help.
Autism is an umbrella term for a wide spectrum of disorders, sometimes referred to as "Pervasive Developmental Disorders" or "Autism Spectrum Disorders." It is a developmental disorder which affects a child's ability to relate and communicate. For some unknown reason, boys have a significantly higher incidence of autism than girls: four out of every five people with autism are male. Autistic spectrum disorders are defined by deficits in three core areas: social skills, communication, and behaviors and/or interests.
The first signs of autism most often present themselves before the age of three; there may be warning signs in children under the age of one. Most often, parents first notice loss of skills or delays in development around 15 to 18 months.
Autism is characterized by deficits in social reciprocity which includes a range of back-and-forth actions, such as gestures, sounds, play, attention, and conversation. Further, ritualistic and obsessive behaviors are often present: for example, a child may insist on lining up toys rather than playing with them. In addition, a child with this condition may have uncontrollable temper tantrums, an extreme resistance to change, and over- or under-sensitivity to sights and sounds. The signs may be obvious, or subtle: for example, a three year old child can read, but can't play peek-a-boo. Another child may never utter a spoken word, but rather uses pictures or signing to be understood. The symptoms are varied, but one thing is clear: the earlier a child is diagnosed and begins receiving services, the better the prognosis for the child. Autism is invisible. For that reason, it can be very mysterious and troubling.
If you are concerned about these symptoms in your children, I highly recommend http://www.firstsigns.org to read more about the warning signs of autism and other developmental problems. If your child's development is worrying you, then I suggest an evaluation as soon as possible. Talk to your child's pediatrician. Your local early intervention program, a children's hospital, or a developmental pediatrician or psychologist are all possible sources for this kind of help. RN
2. I'm hoping you can lead me in the right direction we have three children. Our middle son has Asperger's Syndrome. Is there anything we need to do to prepare our daughters for their children? I know it's already a big concern for our oldest who is only 12, and I worry too for their sake. Please let me know your thoughts. From everything I've read there is a genetic component. That is why my husband does not want anymore children. Or should we turn to the spiritual side of things and leave it to the big man upstairs?
3. My son is almost 5 years old and is mildly autistic. We live in Kuwait. His main drawback is speech comprehension and failure to carry out a conversation. Since the past one month he refuses to take a bath...an activity he enjoyed previously. Forced attempts to bathe him make him hysterical and uncontrollable. We are at a loss. If we force him to bathe would this affect his development i.e. would he regress? On the speech front what advice can you give us? We are residing in Kuwait where no proper speech therapists are available. Please reply at the earliest.
4. : I have a 6 year old boy with autism who is currently in a special class for children with autism. He is a very bright little boy, lovable, energetic and beautiful. He has a wide variety of difficulties. The main one right now is his insistence to have BM's in his pull-ups. He has no problem with urinating and will tell me when he has to go to the bathroom, most of the time. He will not tell me when he has to have a BM. He used to play in it but has recently stopped. Now that I have said this he will probably start again. I do realize that this is just another hurdle to get over, but it is time for him to do it in the toilet. Do you have any ideas for me, I am desperate!
Toilet training is a right of passage for parents as well as children. Children with special needs, and more particularly children with autism have this difficulty compounded by problems with communication, limited control over their bodies, discomfort with strong emotions, and sensory difficulties. Let me begin by assuring you, based on my own experience with my son who has autism and from countless other parents of children with autism/ PDD, that children with autism DO TOILET TRAIN. They do it in a delayed fashion generally and with difficulty. They need extra time, patience from their parents and caregivers, and extra practice and support. They do it, like more typically developing children, when they are ready and not when their parents are ready for them to do it. It is a great sign that your child has begun urinating in the toilet. This is a big step in the right direction. Salute him each and every time he does it.
Many parents in your situation have found that pull-ups do not help with toilet training. They are merely a diaper in a different form. A child with motor control problems may have difficulty sitting on the toilet and controlling the sphincter. For all children, the initial feeling of something leaving the body may be intense and frightening. This can be even more difficult for a child with autism who may be over-reactive to sensation or has a poor kinesthetic sense. The comfort and warmth of a diaper to push against may be hard to give up. It is essential that you go slowly and patiently (even though you are running out of patience). That being said go in small steps. Books and videos which show the problem being solved symbolically can be a great help for children with autism who have great difficulty giving up one routine (in this case making a bowel movement in his pull-ups) and moving onto another routine.
If this makes sense to you so far, go to your bookstore or library (or buy this helpful book) and read the very specific instructions on toilet training by Drs. Stanley Greenspan and Serena Wieder in “The Child With Special Needs” on pages 317-319. They recommend setting up a routine where the child poops in the bathroom and on a schedule after meals even if it is in the diaper. The routine and scheduling is a prelude to pooping on the toilet. For help dealing with your own intense emotions, try to keep in mind that you have every right to these feelings. They are intense and natural but extremely difficult and usual for parents of children with such disabilities as autism.
My own book, “Special Children, Challenged Parents” may be useful to help you understand these cycles of emotion that accompany us through parenting a child whose development veers sharply from the “norm.” I would also strongly recommend that you find and join a support group for parents of children with PDD/Autism. There you will meet and learn from other parents confronting and conquering the same challenges you are facing. In the support group which I facilitate monthly, each meeting brings the announcement of another child successfully pooping in the toilet and a hearty round of applause from all parents present. RN
5. H: My son is autistic (HFA), has AD/HD, Chronic Depression, Dysgraphia, Dyspraxia, Hyperlexic Visual-Spatial Disorder, Visual accommodative insufficiencies, left side motor deficiencies, and other comorbid conditions. The school district has ignored private reports by a neuropsychologist, a developmental optometrist, and a team of psychologists who have all evaluated my son. They only reacted after I brought in two advocates. A team from the intermediate unit had to tell the school that my son needed special education services. He has gone all year without services, despite the fact that I asked for him to be evaluated by the school last July. We have a beginning IEP that went into effect two weeks ago; however, none of the teachers know about it. The special education teacher assigned to support my son with organizational skills and strategies has never worked with autistic students. My frustrations abound. My son is in dire need of an intensive social skills program. I have been told that there "is none, so good luck" by the school district. I will be pursuing compensatory education with them. Do you know of any programs that can accommodate the needs of my son with regard to social functioning and making friends?
Sadly stories like yours occur all to often. It is good for your son that he has a vocal advocate like yourself who is pursuing the important issues for him. Without the kind of services that have been recommended for him, he cannot possibly grow to be all he can be. While I do not know about the local resources for you I would suggest that you take a look at http://www.saveachild.com. Besides the useful information about autism there is a national directory of professionals who are experienced in treating children who are diagnosed within the autistic spectrum.
I would also suggest three books:
- Grandin, T. (1995). Thinking in pictures: And other reports from my life with autism. New York: Random House.
- Greenspan, S. and Wieder, S.(1998). The Child with Special Needs: Encouraging Intellectual and Emotional Growth. Reading, MA: Addison-Wesley.
- Kephart, B. (1998). A Slant of Sun: One Child's Courage. New York: Norton.
While your son has many labels, he is first and foremost a child. Autism as a disability strikes at the ability to relate, and this causes many frustrations for the family. Unfortunately, there are no easy answers. I can offer you a general way to look at the development of social skills in children like your son. All children connect best with adults as well as children when involved in mutually enjoyable activities. For example, if your son enjoys computer learning, he might connect with other children who like the same kinds of computer activities. They would first just play in a parallel relationship. The concept of “Floor Time” in the Greenspan book would aptly apply here. This is how Bill Gates, not known for his social skills, made friends with Paul Allen, and later the two went on to found Microsoft Corporation. Whatever activities your son enjoys, even if he seems to get stuck on them, could be an opportunity for interaction and not a roadblock. Using the example of computers, he might be able to play computer games at home with family and at school with teachers and friends. The development of actual skills would occur by learning the scripts for various situations as Temple Grandin describes in her book. And the joy in relating between parent and child comes through no clearer than in “A Slant of Sun” by Beth Kephart. RN
6. My 12-year-old daughter is diagnosed with Pervasive Developmental Disorder. She maintains herself at school and gets along well with her classmates. She does have an hour per day of special education due to learning disabilities. She is on a low dose of Ritalin and Risperdal to control her outbursts and repetitive behaviors, but it doesn't seem to help that much. The problem is that when she's at home all she ever does is sit on the couch, rock while banging her head, suck her thumb, and hold a dirty old blanket. If she gets mad at her siblings, she flies into a rage. She will throw things, knock over chairs, and swear at them. She becomes totally out of control. She also is very tactilely sensitive to touch, most foods, fabrics, bathing, and brushing her teeth. How can I modify her outbursts along with convincing her to improve her hygiene? I am always calm and patient with her, but she gets really mad at me, if I make helpful suggestions.
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