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The "Structure-Dependent" Child on the Autism Spectrum

Having a set of rules to follow on a day-to-day basis is the most important issue for an Aspergers or high-functioning autistic (HFA) child who is “structure-dependent.” Once this child has a list of DOs and DONTs to follow, there tends to be few concerns except in areas where the parent has not yet established rules, in which case the structure-dependent youngster becomes confused.

Any environment (e.g., home, classroom) where there is lax structure will be a difficult one for the structured-dependent youngster. This child needs rules in order to function and will probably create his own set of rules if parents and teachers don't provide them, which may create problems since the child’s rules will probably not match the adult’s expectations.

The structure-dependent youngster respects authority figures and does well when it is very clear who makes the rules and enforces them. This youngster often does very well in school, but may have behavioral problems at home if the rules are not as clear as they are in the classroom. It is not unusual for moms and dads of this child to be quite surprised to hear how well behaved she is at school.



There are two types of structure-dependent children with ASD:
  1. The “acting-out” type
  2. The “acting-in” type

The “Acting-out” Type--

The acting-out youngster is often seen as a teacher's delight because he is rarely a discipline problem, but at home, this child’s behavior can be totally out of control (e.g., bossy, controlling, tantrums, meltdowns, yelling, arguing etc.). The key to recognizing this type of child is the behavior differences between school and home. If he experiences behavioral problems at school AND at home, then he is not a structure-dependent youngster.

The "acting-out" structure-dependent youngster:
  • can be somewhat naive and taken advantage of since he doesn’t stand up for himself
  • can become distressed by peers who do not follow the rules
  • doesn't want anyone to be upset with him
  • is often very cooperative with authority figures, sometimes to a fault
  • likes to please others
  • often becomes the "rule cop" in the classroom
  • tends to monitor other peers’ and will "tell on them" in they break a rule
  • tries to "fly under the radar"

This child has some anxiety issues, but not to the point where it is overwhelming for him. He manages his anxiety by following the rules – and making sure others do as well. Problems only occur for this child when rules are absent or vague, or when the adult in charge lacks authority in his opinion.

How parents and teachers can help the “acting-out” child:

Written rules, routines and schedules are some of the techniques used to create proper structure for this youngster – no matter how small the issue might be. There is no such thing as a situation that is too small to have rule. Even the “little things” need rules (e.g., going to a store, taking a bath, sharpening a pencil, raising your hand, etc.). Parents and teachers should supply a set of rules regarding appropriate behaviors to be demonstrated in each situation. Also, be sure to explain why there is a rule for such and such. This will help the child to generalize these skills later on.

Teachers who run highly structured classrooms may not need to do much of this. Instead, they may want to help the structure-dependent youngster be less rule-bound and have a greater tolerance for ambiguity.

The “Acting-in” Type--

This type of structure-dependent youngster is similar to the one above, except his behavior is good at home AND at school. He is also rule-bound with rules for everything, but unlike the acting-out child, this child has learned to control tantrums and anger – sometimes too much – in all situations. He views his parent, who has created many rules for him to follow at home, as an authority figure just like his teacher. There are very few situations that don't have rules for him to abide by. However, this child can be obedient to a fault, perfectionistic, obsessive-compulsive, and/or depressed. Thus, he needs to become more flexible.

How parents and teachers can help the “acting-in” child:

The adults need not worry about rules with this child; rather, a crash course in expressing emotions, as well as flexibility to help her see the world as less black-and-white would be helpful. This child needs to learn more about the “reasons behind actions” and how the world works, with less emphasis on unwavering compliance. Without throwing out the rules altogether, help this child to develop decision-making and problem-solving skills so that she can become a more independent thinker.


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When Your Aspergers Child Can't Make Friends

If your Aspergers child doesn't ever talk about anyone in his class, doesn’t ask to bring a friend home, never gets invited to any of his peers' homes, and seems to be a loner in general preferring to play by himself, then he might be having trouble in the friendship department (his teacher may be able to confirm your suspicions).

Aspergers and HFA children need to understand when to reach out, pull back, blend in, speak up and let go. So, how can parents help their Aspergers child make and keep friends?

Click here for strategies that you can use to help your child make - and keep - friends!



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Helping Family & Friends To Understand Aspergers and HFA

"Any advice on how to approach our friends and family to tell them about our son's recent diagnosis of high functioning autism ...or would it be better to say nothing?"

RE: "...would it be better to say nothing?" It would be good for your friends and family to understand High-Functioning Autism (HFA), otherwise they will come to their own conclusions about your son's behavior, which will undoubtedly be way off base.

Aspergers and HFA are often mentioned in the newspapers or on television, but the truth is that, besides remembering Dustin Hoffman's performance in the movie "Rain Man" as an Autistic savant, most people have no clue about what an Autism Spectrum Disorder (ASD) is.



If you’re an “old pro” at parenting a child with Aspergers or HFA, then you probably have had a lot of explaining to do to family and friends through the years. For those of you who are just now starting this journey, here are some things you can do to help family members with their understanding of the disorder:

1. Allow family members to attend Individualized Education Plan (IEP) meetings. In addition, family members should establish a relationship with teachers and be perceived as part of the “treatment team.” Collaboration in this way is critical to school success.

2. Assure others that even though there is no single known cause or cure, HFA is treatable. Although it is a life-long disorder, studies show that early diagnosis and intervention can lead to significantly improved outcomes for kids. With the support and love of family and friends, along with appropriate services, kids with HFA can live full, healthy and meaningful lives.

3. Different circumstances call for different parenting. Explain that while you are trying to give your youngster as normal an environment as possible, there may be things you will do (or not do) for your “special needs” child than you would for other children in the family. For example, there may be different rules and consequences, sleeping arrangements, dietary or safety concerns. If necessary, gently explain that this doesn't mean that you're playing favorites or "babying" your HFA youngster -- you are simply addressing his unique needs and protecting him from unnecessary stress.

4. Don't be offended. Assure family members that your youngster's lack of social interactions with them (e.g., how he may avoid looking them in the eye or be uncomfortable with the usual hugs or other physical contact) is simply par for the course and not a personal affront. The same goes for a lack of other social graces, and how he often says whatever is on his mind. An HFA kid might bluntly say, "Aunt Rosie is fat" or, when given a gift, "I don’t play this game." He doesn't mean to be offensive -- he is just reporting what he observes.

5. Encourage family members to discuss their fears, disappointment, confusion and concerns. Remember the feelings you, the parent, experienced upon hearing the diagnosis, and realize that other family members will most likely experience similar emotions. In addition to the concern they have for their grandson or granddaughter, niece, nephew, sibling, etc., they also will have concerns for you.

6. Encourage others to expect the best from your youngster. Focus on the youngster's special abilities. Treat him as you would any other youngster or family member to the extent possible. Realize he is more “like” other kids than he is “different.”

7. Give information about HFA on a need-to-know basis. A bombardment of information may cause confusion or undue alarm. For instance, you might want to skip the nitty-gritty details of a GFCF diet and postpone telling stories about HFA children who run away or who still aren't potty-trained by age 8.

8. Offer friends and family a short list of Internet resources. That way they can explore the world of HFA at their own pace. That said, you might want to ask that they not forward you every report they read about Aspergers and HFA, or start a debate about ASD causes and "cures."

9. Provide some tips regarding purchasing gifts, toys or planning outings. Gently remind family members of your youngster's specific sensory issues, phobias or environmental triggers to avoid unpleasant scenes or meltdowns while in their care.

10. Remind everyone the importance of accepting your youngster for who he is, not who they hope him to be. Children with HFA may need more space, more understanding and more patience. Family members may need to interact with your youngster on his own terms. For example, don't insist on hugs or other physical contact, don't tease (even good-natured joking), and unless told otherwise, defer to mom and dad for any concerns, problems or discipline issues.

11. Teach family the necessary skills to assist your youngster in your absence, even if this care would only be needed on an emergency basis. Require family members to maintain and stick to schedules, special diets and routines. Also leave a list of service providers who can be contacted if the family caregiver has concerns or questions regarding your youngster's behaviors or actions while you're unavailable.

12. If one or more family members simply don’t “get it,” then suggest a support group. If your extended family has difficulty understanding or accepting the diagnosis, then they should consider getting in touch with a support group in order to hear other families' stories, which can help your family members gain a better understanding of the disorder. They can also attend special events or training opportunities, and if necessary, seek family counseling services.


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Explaining Autism Spectrum Disorder to Your Child

Moms and dads go through a range of emotions when given their youngster’s diagnosis of Aspergers or High-Functioning Autism (HFA). Often times, brothers and sisters, grandmothers and grandfathers, and other family members go through a variety of emotions and stages of dealing with an Aspergers family member as well.

Professionals agree that the Aspergers or HFA youngster should be given information about his diagnosis, as well as support for understanding and coping with the new information. However, many moms and dads may fear a number of things if they tell their affected child – or other kids (and sometimes other family members) about their youngster’s disorder. For example, they may fear that:
  • the youngster (or others) will use the disorder as an excuse for why she can’t do something
  • the youngster will think of himself (or others will think of the youngster) as a complete failure with no hope for a positive future
  • their youngster may lose some of her options in life
  • their youngster will become angry or depressed because he has a disorder
  • their youngster will not understand

These issues may or may not occur, but can be dealt with if needed. Some of these issues may surface whether or not the youngster and others are told of the diagnosis. In any event, all involved – including the Aspergers or HFA child – should have important information about the disorder since the diagnosis will affect various aspects of his life.



The possibility of unwanted issues occurring is more likely when the child – and other family members – are not told about the disorder and given the support they need. Consider the stories told by many people on the autism spectrum who were not told – or not diagnosed – until they were grown-ups. Misunderstanding others and having poor social skills leads to poor interactions with others and results in ridicule and isolation. Being told, “You should know better than that” or “stop being so rude to people” – and not having a clue what they did or how to “fix” or change the situation – all lead to disappointment and bewilderment.

Many people who didn’t know they had the disorder until they were adults (either because their parents didn’t know, or withheld information) have self-disclosed that, as children, they were seen as a major disappointment and failure to their families and others, but had no clue why they failed or how to do better. Over time, the end result was low self-esteem and isolation. Many of these adults now feel that if they had received the correct information about their diagnosis and what their differences were as children, they would have had a better chance of being more successful in multiple areas today.

Your youngster may know that he’s different, but he may come to the wrong conclusions about his perceived differences if you, the parent, leave him in the dark about his diagnosis. He may even wonder if he has a terminal illness and is going to die. He sees doctors and therapists and goes for treatments – but is not told why. Even the youngster who doesn’t ask or verbally express concern about being different may still be thinking some of these thoughts. Even kids with Aspergers and HFA can sense the frustration and confusion of others, and as a result, they may come to the wrong conclusions about the cause of the turmoil around them.

It is the parents’ decision whether they share information about the diagnosis with their youngster. It can seem like an overwhelming task, especially when day-to-day issues consume all the time and energy of a family. It may be helpful to discuss your concerns and possible options for disclosure with others that know your youngster well, other moms and dads of kids on the spectrum, and even people with Aspergers and High-Functioning Autism who have been told about their diagnosis.

There is no exact age or time that is correct to tell a youngster about her diagnosis. Her personality, abilities and social awareness are all factors to consider in determining when she is ready for information about her diagnosis. Starting too early can cause confusion. If older when told, she may be extremely sensitive to any suggestion that she is different. You can look for the presence of certain signs that a youngster is ready for information. Some kids will actually ask, “Is there something wrong with me?” or “Why can’t I be like my friends?” These types of questions are a clear indication that your child needs some information about her diagnosis. Some Aspergers kids may have similar thoughts, but may not be able to express them.

Some kids don’t get a diagnosis until they are in adolescence. Frequently, those who are diagnosed later have had some bad experiences that can influence the decision of when to share information with them about their diagnosis. They may not be emotionally ready to cope with the new information because of the toll the bad experiences have taken on their sense of self-worth. They may be very sensitive to any information that suggests that they are “weird.” Thus, they are not ready for any diagnostic information. On the other hand, an older teen may already know about a previous diagnosis (e.g., Attention Deficit Disorder, Oppositional Defiant Disorder, etc.). Because of this history with another label, it may be an appropriate time to share the diagnosis and some concrete information about ASD.

Many parents have found that setting a positive tone about the child’s “uniqueness” is a great place to start. Everyone is unique with their own likes and dislikes, strengths and weaknesses, and physical characteristics. One of my favorite lines is, “God made us all different because he knew it would be too boring if we were all the same.” Differences can be discussed in a ‘matter of fact’ manner as soon as the youngster understands simple concrete examples of differences. With this approach, it is more likely that differences – whatever they are – can be a neutral or even fun concept. Matter of fact statements like, “Daddy has glasses and mommy doesn’t” or “Michael likes to ride his bike and you like to play computer games” are examples. The ongoing use of positive concrete examples of differences among familiar people can make it easier to talk to your son or daughter about other contrasts related to his/her diagnosis.

Many adults of the spectrum assert the view that kids should be given some information before they hear it from someone else or overhear or see information that they sense is about them. An Aspergers youngster may have the view that people don’t like him or that he is always in trouble, but doesn’t know why. If given a choice, waiting until a negative experience occurs to share the information is probably not a good idea.

It is important that the process of explaining the disorder to a youngster is individualized and meaningful. It can be hard to decide what and how much information to begin with. If your son or daughter has asked questions, this gives you a place to start. But make sure you understand what he/she is asking. Recall that it is easy to misinterpret the meaning of his/her words. For those kids who have a keen interest in their diagnosis (and whose reading ability is good), there are many books written by autistic kids that may be of interest. There are also many more books written by adults on the spectrum. These authors are reaching out to others with a diagnosis by sharing experiences, tips on life’s lessons, and helping readers feel that they are not alone in this journey.

To make your discussion meaningful, you can begin by talking about any questions that your child has asked. You may want to write down key points and tell her that others with this diagnosis also have some of the same questions and experiences. Then you could ask if she would like to find more information by reading books, watching videos, or by talking with other people. If asking your youngster if she wants information is likely to get a “no” response, you may choose to not ask, but tell her that you will be looking for information and would like to share it with her. Let her know that she can ask any questions she wants to – at any time.

When people with Aspergers and High-Functioning Autism have an opportunity to meet others with the diagnosis, they often find it is an eye-opening and rewarding experience. People with the disorder can sometimes better understand themselves - and the world - by interacting with others on the spectrum. Interacting with others on the spectrum can help your child realize that there are others that experience the world the same way he does, and that he is not the only one who is “different” (which makes the disorder not so different after all).

For many parents, using a therapist to begin the disclosure process may be helpful. Having a therapist involved, at least in the beginning stages of disclosure, leaves the role of support and comfort to the parents and those closest to the Aspergers or HFA youngster. For a child with the disorder, it can be especially hard to seek comfort from someone who gives you news that can be troubling and confusing. Having a therapist whose role is to discuss information about the youngster’s diagnosis and how the disorder is affecting his life can make it easier for parents to be seen by the youngster as supportive. The therapist discussing information with the youngster about his disorder can also help moms and dads to understand the youngster’s reaction and provide suggestions for supporting him. Having a therapist involved also allows the use of a location outside of the family home for beginning this process.

Explaining ASD to a child can’t be done in one or two conversations. The child needs time to assimilate the new information about herself at her own pace. It will likely take several weeks before the youngster initiates comments or asks questions about the new information. The process of explaining the disorder is ongoing. Making the information meaningful from the youngster’s point of view will greatly augment the learning process. Also, a positive “spin” on the condition helps maintain self-esteem and a productive atmosphere for learning.

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Overcoming the Challenges of Raising Aspergers Children

If you've recently learned that your youngster has - or might have - Aspergers or HFA, you're probably wondering and worrying about what comes next. No parent is ever prepared to hear that a youngster is anything other than happy and healthy, and a diagnosis of Aspergers can be particularly frightening. You may be unsure about how to best help your youngster, or you may be confused by conflicting treatment advice. Also, you may have been told that Aspergers is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference.

In this post, we will discuss the following:
  • Accept your youngster – quirks and all
  • Become an expert on your youngster
  • Don’t give up
  • Learn about Aspergers 
  • Provide structure and safety 
  • Find nonverbal ways to connect 
  • Create a personalized Aspergers treatment plan 
  • Find help and support 
  • Know your youngster’s rights 
  • Consider yourself a member of a very elite and interesting group of parents

Click here for the full article...



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