Saturday, August 28, 2010

Parenting a child with Autism/Aspergers Syndrome

There are three common indicators of Autism:

Unusual and repetitive behaviors and/or narrow, obsessive interests

Poor communication &

Poor social skills, to include:

Lack of or difficulty with joint attention &

Significantly to extremely guarded interactions.

Often when people talk about Autism, they talk about the autism spectrum. Really, there could be 10 or more disabilities identified over the next 20 years. Two segments of the spectrum are autism and Aspergers. Autism is usually marked by a lack or great difficulty with joint attention and Aspergers is usually marked by great difficulty in interactions and social situations.
Do not diagnose Autism on your own, if you suspect a child may have autism, the earlier s/he is identified and diagnosed and receiving appropriate intervention the better. Please refer the child (if your own) or the child’s parents to a qualified medical practionaire, psychologist, or early intervention practionaire who can diagnose Autism using standardized assessments.  Some parents read information on Autism or watch a television show, decide that their child has autism and tell their doctor, almost insisting that s/he diagnose their child with Autism.  This is a huge mistake for the child.  If your child has some Autism like symptoms, it is VERY important that the correct diagnosis is made and the correct, best practice intervention is used for the diagnosis. Some of the supplemental materials below may provide some additional assistance.

This following section/story is from the perspective of the child with autism; (some of these basic ideas are borrowed from Dr. Richard Solomon of the PLAY Project

Imagine you accidentally stumbled into a rocket ship (I realize it is hard to imagine how this might occur but please humor me). The rocket ship takes off at incredible speed and leaves our solar system (fortunately there is food and water aboard) and in a few short days the ship lands on another planet automatically opening the door. Still somewhat shocked and dazed you peer out and see some very strange aliens with what appears to be four eyes, hands, and tentacles. They notice you looking out of the space ship (after all the ship made a great deal of noise when it landed) and begin to approach. You of course, have no idea what to expect, for all you know you landed on Aunt Gazeldalipsnor and they are furious. As quickly as possible you attempt to close the door (but can not) so you retreat back further into the ship and begin to pace back and forth, talking to yourself, wondering what you are going to do, obsessing about how you could possibly get back to your world repeatedly asking yourself what you are going to do and avoiding any possible glances at the open door. After what seems like hours, you decide to take a peek out of the door and see an even larger crowd of aliens gathering. Many are looking and pointing up to the sky and some are looking and pointing in another direction. They are making an unrecognizable shrill sound that though you did not believe it possible, causes you even greater anxiety. You do not dare look at what they are pointing to and immediately, with a gasp, return to even quicker pacing and repetitively asking yourself, “what am I going to do?”

After a while longer, one approaches the door and through the corner of your eyes you see an extended tentacle with what appears to be an oozing pile of goop. Immediately you turn away and return to pacing. Unfortunately you are near exhaustion and are not able to accelerate your pace. The alien places the goop on some sort of plate on a table just inside the space ship, and leaves. Nothing explodes and after a while, partially out of sheer exhaustion, you sit on the floor in a corner and begin to flap your hand uncontrollably. Strangely this seems to comfort you and eventually you fall asleep.

The following morning you awake and look for food but find that you have already eaten all that was previously stored. You glance at the goop and consider it might be food but can not bring yourself to taste it but notice a rather fascinating gadget on the wall of the ship and pick it up to study. It has a most interesting design and when you push certain buttons a screen appears. This is REALLY cool! You can do all kinds of things with it and all the rest of this strange place seems to just disappear as you focus on this fascinating gadget.

After a while you notice that you are very hungry even to the point of hurting a little. On the table you notice some additional items but have no idea how they got there. There is a sweet smell and you pick up a small firm but supple item that smells particularly sweet. Bringing it to your mouth you touch it with your tongue and though not a particularly good taste it doesn’t have a bad taste either. You are hungry enough that you bite down a little and a delicious juice oozes out into your mouth. Immediately you bite down and chew this item and get a great sensation as it moves down your throat. There are more and some others to try so you continue to eat what you like until you are not as hungry and notice that some of the aliens are still outside the door staring at you. This freaks you out and you immediately return to pacing which though exhausting, also helps you to calm. After pacing for some time, you again pick up the gadget and loose yourself in the things you can make it do.

This same routine continues for many days or months, you are not sure as everything seems to flow together including the anxiety that is almost your constant companion. Without the calming activities you have discovered, which have occasionally been interrupted by the aliens, you explode uncontrollably, your anxiety being so high.

One day, one of the aliens approaches you with some additional foods, making a strange noise and pointing to the food item, while you are eating, you glance at the food and the alien and being extremely hungry and recognizing the food as particularly delicious, you take some from the plate held by the alien but quickly return to pacing and then playing with another interesting gadget you had become aware of just a few days or weeks ago.

As you are investigating this new gadget you suddenly realize that the same alien who brought you the extra food is sitting inside the ship by the door investigating the same type of gadget as you. You quickly return to what you are doing.

Over time experiencing many of the same things that have occurred with food, you notice the same alien investigating a similar gadget to what you happen to be investigating at the time and one day you notice the alien getting the gadget to do something that you had never seen it do this is slightly intriguing but you return your focus to the gadget and again find yourself immersed in the gadget to the exclusion of everything else and this is comforting. Some days later you notice the alien’s hand moving towards the gadget you are investigating and the alien does something that makes the gadget do something new this is a shock but the new thing is so intriguing that you imitate what the alien did and the gadget does it again.

Days and weeks pass and you become aware that you are less anxious with the presence of the alien and start to accept a couple of others and even start to feel less anxious as they interact with you and show you new things you can do with different gadgets.

A few days later you find yourself gesturing to the alien to show you how to do something with one of the gadgets you even repeat the sound you know associate with one of the particularly delicious foods that had been provided and almost magically the alien brings you more of that food. Perhaps you can get things you want or need from these aliens. This communication continues to grow and you begin to enjoy these strange beings. Occasionally you still have feelings of anxiety but you are no longer constantly anxious and you even begin to wonder out of the rocket from time to time and notice the aliens pointing to a building not far away and a hill and other creatures on the hill. You also notice the warmth that comes from a glowing object in the sky and it makes you feel comfortable and even a little more relaxed.

As increasing activity, interaction, and even communication with the aliens grows, you one day notice the shiny outside of the rocket ship and realize it reflects the image of other things around you. You can see the building in the distance and when you move in another direction you can see some of the aliens you have become comfortable with, then you are shocked, you see yourself, and you look just like the aliens.

Many children with autism can show significant improvement with the right intervention at the right time.  Many countries around the world provide services for children with autism. Academicians and service providers in the UK, US, Canada, Australia as well as many other countries have and continue to do great research and provide great service to children with autism and their families. If you are not able to locate resources, please let me know where you are looking for services for and I will attempt to find them for you.

The best services will provide support to the child care center when applicable, and training and support directly to the parents and other family members.

In some ways, providing care for children with Autism is not too dissimilar to providing care for other children, with the exception that it requires more and sometimes significantly more patience and effort and what may typically be a spontaneous response from many children will be more guarded and difficult from a child with autism.

Perhaps you can think about it this way. A child with Autism is sort of like many teenagers, in their own world, wanting little to do with their family, and non communicative. If you were a parent of such a teenager I might recommend you get into their world and spend time with them there. This does not mean that you would engage in illegal, immoral, or unethical activities. I would not want you to start smoking pot or taking other drugs and attending inappropriate parties with your teenagers. I would want you to perhaps read some of the books they are reading so that you can discuss it with them, play some of the appropriate games they are playing, and learn about things they are interested in. Eventually you might be able to get your teen to have his or her friends over to your house for an appropriate party that while you are not right in the same room all the time, you can keep an eye on and assure that it is safe. You would want to find out what kind of food and legal drink they really like and provide if for the party. As you find out what their interests are and you learn more about their interest, instead of trying to show that you know a lot, you might ask them intelligent questions about the subject. Eventually they just might be interested in things that interest you and you might have a real relationship again.

"Today, 1 in 150 American children is diagnosed with autism. (This number seems to keep changing, I’ve seen it as many as one in 90. Part of the reason for the difference is the date of the research, the quality of the research, to include the sample, and what the researchers are calling Autism.)

Joint attention is a common significant deficit for persons with Autism.  So what is joint attention? Joint attention occurs when you reference an object, person, or thing, (pointing, looking) drawing the child’s attention, and the child is able to refocus on that same object, person, or thing with you. Joint attention is one of the most important aspects of autism treatment.

Fortunately we now know enough about Autism to know which children are most likely to benefit from intensive interventions and which types of interventions provide the most benefit for the child, considering: age of child, specific Autism Spectrum diagnosis, functioning level of the child, and willingness of the parent(s) to be active participants in treatment.

In many cases intervention can be provided for even less than $10,000.00 per year. Sometimes significantly less. If the right intervention is provided for three years to the child best suited to benefit from that intervention by a well qualified therapist properly implementing the intervention with active and continuing participation by the parent, government will literally save hundreds of thousands and in some cases even millions of dollars over the life of the child; plus it’s the right thing to do for the child and family. It’s the right thing to do fiscally, therapeutically, and humanely.
If it is the wrong intervention provided by poorly qualified interventionists without active parental(guardian) participation and without well written contextually mediated objectives, it is a disservice to the child, family, and taxpayer.
Depending on the type of intervention, the time spent by the parent can be either time set aside to specifically work on the intervention, a part of the parent and child’s typical routines, or a combination of both.
The right intervention for the right child, correctly implemented, will provide significant improvement in both functioning level and behavior.
More specific detailed information, references, and resources can be found at: and some additional linked websites.

Anxiety and Autism
Because of the communication difficulties often associated with disabilities such as autism and cerebral palsy, anxiety and frustration are often heightened to extreme levels. Thus effective communication through whatever means available becomes a significant and almost overriding need. If the individual with the disability must develop the means, appropriate or not, to communicate their needs, they will. One of your very top objectives to help them meet their needs, reduce their anxiety and maladaptive behaviors, and help them communicate more effectively is to help them, with the assistance of professionals as needed, to develop an effective and appropriate means of communication.

Remember almost all behavior is functional. Some people need help to develop more appropriate means to communicate and get their needs met. Also, just communicating a need, without having the corresponding and appropriate need met, is worthless. This does not mean that you let someone get everything they want. Everyone has boundaries, and sometimes there are different and more appropriate means to getting a need met, such as the need for affection.

Supplemental Material:
Better Outcomes: How to write Measurable Behavioral Objectives, Goals and Plans
Current Autism Research or Hope for Autism
Caring for Children with Autism and Aspergers
NIMH · Treatment Options
Quality Treatment for Children
Afraid of Alzheimer’s: Current research and news.  This has been added because of some of the commonalities in the research.
Nightmares: Causes and help for children with nightmares
Parent Implemented Interventions for Autism (ASD)

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