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Understanding and Addressing Problematic “Pathological Demand Avoidance” in Autistic Children and Teens

Pathological Demand Avoidance (PDA) is a behavioral profile that is often observed in some individuals on the autism spectrum. It is characterized by an extreme avoidance of everyday demands and requests, as well as a need to be in control of situations. PDA in autistic children can present significant challenges for both the children and their families, as well as for educators and other professionals involved in their care. This essay aims to explore the nature of PDA in autistic children and to discuss potential strategies for supporting these individuals.

Firstly, it is important to recognize that PDA is not a standalone diagnosis but rather a part of the autism spectrum. Autistic children with PDA can display a range of behaviors, including high levels of anxiety, impulsivity, and difficulties with social interaction. They may also exhibit behaviors commonly associated with oppositional defiant disorder, such as defiance, aggression, and explosive outbursts. These behaviors can significantly impact a child’s ability to engage in everyday activities and can create challenges within home, school, and community settings.

Autistic children may exhibit defiant behavior as a result of difficulty in expressing their needs, sensory sensitivities, communication challenges, and difficulties in understanding social cues. It is essential to approach this issue with empathy, patience, and effective strategies to support the child and help them manage their behavior.

One of the primary reasons for defiant behavior in autistic children is the difficulty in expressing their needs and emotions. Many autistic children struggle with communication, and when they are unable to communicate their needs effectively, they may resort to defiant behavior as a way of expressing frustration or seeking attention. It is crucial for parents and caregivers to recognize the underlying reasons for the defiance and work on alternative communication methods, such as using visual aids, sign language, or assistive communication devices, to help the child express themselves.

Sensory sensitivities also play a significant role in triggering defiant behavior in autistic children. Many autistic individuals experience sensory overload, where certain sounds, lights, textures, or other sensory inputs can be overwhelming. In such situations, a child may exhibit defiant behavior as a coping mechanism to protect themselves from sensory discomfort. Understanding the child's sensory sensitivities and creating a supportive environment that accommodates their sensory needs can help minimize defiant behavior.

Moreover, the social and communication challenges that autistic children face can contribute to defiant behavior. Difficulties in understanding social cues, interpreting nonverbal communication, or navigating social interactions can lead to frustration and anxiety, prompting the child to display defiant behavior. Teaching social skills, providing clear and consistent expectations, and implementing behavioral strategies can assist the child in managing their responses in challenging social situations.

When addressing defiant behavior in autistic children, it is essential to implement positive behavior support strategies. This involves identifying triggers, proactively teaching and reinforcing alternative behaviors, and providing a structured and supportive environment. Positive reinforcement, visual schedules, and clear expectations can help autistic children understand boundaries and regulate their behavior more effectively.

When working with autistic children exhibiting PDA, it is crucial to adopt a collaborative and person-centered approach. This involves gaining a comprehensive understanding of the individual child's strengths, preferences, and triggers, as well as involving them in decision-making processes. It is also important to provide a structured and predictable environment that minimizes unnecessary demands, as well as offering clear and concise communication to help reduce anxiety and confusion.

Furthermore, supporting autistic children with PDA may involve the use of strategies such as providing choice and flexibility, offering alternative means of communication, and using visual supports to aid understanding and reduce anxiety. It is also important to focus on building positive relationships and fostering a sense of trust and security, as this can help to reduce the need for control and avoidance behaviors.

In addition, collaboration between families, educators, and professionals is essential in developing and implementing effective support strategies for autistic children with PDA. This may involve the development of individualized behavior plans, regular communication and information sharing, and ongoing training and support for those working with the child. By working together, it is possible to create a consistent and supportive environment that meets the unique needs of the child.

In summary, addressing problematic PDA in autistic children requires a multi-faceted and collaborative approach that recognizes the individual needs and strengths of each child. By understanding the nature of PDA, adopting person-centered approaches, and working collaboratively, it is possible to provide meaningful support that enhances the well-being and quality of life for autistic children with PDA.

 

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Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt


Some parents grieve for the loss of the youngster they imagined they had. Moms and dads have their own particular way of dealing with the situation based on a number of factors (e.g., their personality style, life experiences and support systems, among others).

Clearly there are a range of stages and coping techniques, such as denial, depression, anger and rationalization. Most families recognize, at least at some level, that there is something significantly wrong with their "special needs" youngster. To at last be given a name for it (i.e., ASD level 1,  or High-Functioning Autism) can be a relief.

Certainly, having a clearer understanding of what is wrong affords the opportunity to obtain appropriate services, as well as to begin to think about the youngster in a different, and hopefully more helpful way.

Grief—

The grief surrounding the diagnosis of an Autism Spectrum Disorder (ASD) is compounded by tremendous confusion and uncertainty. Many moms and dads have little understanding of what the diagnosis entails. Many have the inaccurate perception that all kids with ASD are non-verbal, mentally retarded, extremely remote and possibly self-abusive. Parents must become informed about the varied presentations of ASD. This spectrum is a long one with extremely impaired individuals at one end, but highly capable ones on the other.

While the continuum is long, the potential of any particular youngster is unclear. The course of the disorder is extremely hard to predict at an early age. Some very impaired looking toddlers go on to become high functioning adults, including adults with Asperger's. As one parent said, “The problem is we don’t know if he is going to become a rocket scientist or work in a sheltered workshop.”

After learning of the diagnosis on an autism spectrum disorder, the family is forced not only to come to terms with what may be a devastating handicap, but is thrust almost immediately into making many critically important decisions. To champion the youngster’s cause at the same time one must begin to grieve is truly an untenable position. 

It is as if one must – overnight – and while grieving – become an expert in ASD and its treatment, despite tremendously conflicting opinions. There is considerable support to the notion that the availability of early, intensive intervention offers the best hope for improvement. While this hope leads to a sense of optimism, the message that services must be implemented immediately and intensively can also feel overwhelming.

In addition to decisions about what kind of schooling their youngster should have, moms and dads must also make decisions about such treatments and services as speech therapy and occupational therapy. What about sensory integration? Auditory retraining? Facilitated communication? Medication? Behavior modification? Many times the approaches seem confusing and even contradictory, with proponents claiming success and even cures. How is a parent, especially one in the midst of grieving, and of desperately hoping for help, supposed to make informed, intelligent choices?

The grief work in the families of kids with an ASD is an ongoing process. In most families, there are periods of greater and lesser intensity to the grieving. This intensity may partly relate to developmental issues in the youngster. For example, birthdays or other rites of passage (e.g. Bar Mitzvahs, graduations, etc.) may underscore how different the youngster is from his typical peers. Grief intensity may also relate to more personal, individual factors. These factors include such things as one’s own temperament, history, supports and losses.

In addition to the waxing and waning in the intensity of grief, there is typically an alternation of hope and despair. Each new treatment or program for the youngster is often accompanied by an increase in optimism in the parents. If the new treatment or program is deemed unsuccessful, despair may follow, only to be replaced by hope once again, when a new plan is implemented.

Feelings of jealousy and anger are common in many families. These feelings may be directed towards other families who do not have to contend with such stresses or towards other families with disabled kids whose kids are higher functioning or have improved to a greater extent. Many families also experience feelings of anger and frustration towards professionals for a variety of reasons. These reasons include not diagnosing properly, insensitivity, offering false hope or providing inadequate or ineffective treatments or services.

One variant of grief that sometimes occurs in the families of higher functioning kids, particularly those with Autism, is the sense that the youngster “should” be doing better than he is because he is so bright. There may be feelings of frustration that “normalcy” is so close, yet still out of reach. For some of these kids and their families, graduation from high school is a particularly stressful time. For the parents, there may be the sadness that their youngster is not yet able to be independent the way their typically developing peers are. Finding work is often challenging for those on the autism spectrum, and support services are usually quite limited for this population.

Guilt—

Guilt is another common reaction to the diagnosis of ASD in a youngster. Fortunately, the medical and professional community no longer hold to the notion that autism is a result of parental failing. Today, there is widespread acceptance of the fact that ASD is a genetically based disorder. The possible contribution of additional factors, such as environmental toxins, is currently being studied.

This change in perspective, from parental failing to genetic loading, has not eradicated parental guilt, although in most cases it has lessened it. Many moms and dads wonder what they unwittingly did to contribute to their youngster's disorder. Were they exposed to too much mercury from injections or dental fillings? Was the termite control treatment of their house the culprit?

There have been articles in the press on the high incidence of ASD in Silicon Valley. Time Magazine entitled the phenomenon the "Geek Syndrome" in the article "The Secrets of Autism". This term has led some to speculate that the blame has shifted from “refrigerator mothers” to “geek fathers.” Said differently, believing genetics is the cause does not necessarily eradicate the guilt parents feel. Unfortunately, in some cases, it seems to confirm their fears about having caused or contributed to their youngster’s disability.


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Dealing with Difficult ASD-related Behavior: Critical Tips for Parents

"I need some advice on how to handle behavior problems in my child with ASD, such as how to use the right discipline, dealing with his obsessions, sibling issues, sleep problems, school-related problems, and acting-out behavior in public. Thanks!"

Disciplining kids displaying ASD-related behavior will often require an approach which is somewhat unique to that of "typical" kids. Finding the balance between understanding the needs of a youngster with ASD - and discipline which is age appropriate and situationally necessary - is achievable when applying some simple, yet effective strategies. These strategies can be implemented both at home and in more public settings.

General Behavior Problems—

Traditional discipline may fail to produce the desired results for kids with ASD level 1 ("high-functioning autism"), primarily because they are unable to appreciate the consequences of their actions. Consequently, punitive measures are apt to exacerbate the type of behavior the punishment is intended to reduce, while at the same time giving rise to distress in both the youngster and the mom or dad.

At all times, the emotional and physical well-being of your youngster should take priority. Often this will necessitate removing your youngster from a potentially distressing situation as soon as possible. Consider maintaining a diary of your youngster's behavior with a view to ascertaining patterns or triggers. Recurring behavior may be indicative of a youngster taking some satisfaction in receiving a desired response from peers, moms and dads, or teachers. 
 
 
For example, the youngster may come to understand that hurting another classmate will result in his being removed from class, notwithstanding the associated consequence to his peer. The solution may not be most effectively rooted in punishing the youngster for the behavior, or even attempting to explain the situation from the perspective of their injured peer, but by treating the root cause behind the motivation for the misbehavior (e.g., maybe the ASD youngster can be made more comfortable in class so that he will not want to leave).

One of the means to achieve this may be to focus on the positive. Praise for good behavior, and reinforcement by way of something like a Reward Book, can assist. The use of encouraging verbal cues delivered in a calm tone are likely to elicit more beneficial responses than the harsher verbal warnings that might be effective with "typical" kids. If necessary, when giving directions to stop a type of misbehavior, these should be framed as positives rather than negatives (e.g., rather than telling a youngster to stop hitting his brother with the ruler, the youngster should be directed to put the ruler down).

Obsessive or Fixated Behavior—

Almost all kids go through periods of development where they become engrossed in one subject matter or another, but kids with ASD often display obsessive and repetitive characteristics, which can have significant implications for behavior. For example, if an ASD youngster becomes fixated on reading a particular story each night, she may become distressed if this regime is not adhered to, or if the story is interrupted. Again, the use of a behavior diary can assist in identifying fixations for your youngster. 
 
 
Once a fixation is identified, it is important to set appropriate boundaries for your youngster. Providing a structure within which your youngster can explore the obsession can assist in then keeping the obsession within reasonable limits, without the associated angst which might otherwise arise through such limitations (e.g., tell your youngster that she may watch her favorite cartoon for half an hour after dinner, and make time for that in her routine).

It is appropriate to utilize the obsession to motivate and reward your youngster for good behavior. Always ensure any reward associated with positive behavior is granted immediately to assist the youngster recognizing the nexus between the two.

A particularly useful technique to try to develop social reciprocity is to have your youngster talk for five minutes about a particularly favored topic after he has listened to you talk about an unrelated topic. This serves to help your youngster understand that not everyone shares his enthusiasm for his subject matter.

Bridging the Gap between ASD and Discipline and Other Siblings—

For siblings without autism, the differential - and what at times no doubt appears to be preferential - treatment received by an ASD sibling can give rise to feelings of confusion and frustration. Often, they will fail to understand why their brother or sister apparently seems free to behave as they please without the normal constraints placed on them.

It is important to explain to siblings of ASD kids and encourage open discussion about the disorder itself. Encouragement should extend to the things siblings can do to assist the ASD youngster, and this should be positively reinforced through acknowledgement when it occurs.

Sleep Difficulties—

ASD kids are known for experiencing sleep problems. Kids with the disorder may have lesser sleep requirements, and as such are more likely to become anxious about sleeping, or may find they become anxious when waking during the night or early in the morning.

Combat your youngster's anxiety by making her bedroom a place of safety and comfort. Remove or store items which might be prone to injure your youngster if she decides to wander at night. Include in the behavioral diary a record of your youngster's sleep patterns. It may assist your youngster if you keep a list of her routine (e.g., dinner, bath time, story and bed time) in order to provide structure. Include an image or symbol of her waking in the morning to provide assurance as to what will happen. Social stories have proven to be a particularly successful tactic in decreasing a youngster's anxiety by providing clear instructions on how part of her day is likely to play out.

At School—

Another autistic characteristic is that kids will often experience difficulty during parts of the school day which lack structure. If left to their own devices their difficulties with social interaction and self-management can result in anxiety. The use of a buddy system can assist in providing direction, as can the creation of a timetable for recess and lunch times. These should be raised with teachers and implemented with their assistance.

Explain the concept of free time to your youngster, or consider providing a separate purpose or goal for your youngster during such time (e.g., reading a book, helping to set up paint and brushes for the afternoon tasks, etc.).

In Public—

Kids on the spectrum can become overwhelmed to the point of distress by even a short visit in public. The result is that many moms and dads with ASD kids simply seek to avoid (as much as possible) situations where their youngster is exposed to the public. While expedient, it may not offer the best long-term solution to your youngster, and there are strategies to assist with outings.

Consider providing your youngster with an iPod, or have the radio on in the car to block out other sounds and stimuli. Prepare a social story or list explaining to the youngster a trip to the shops, doctor, etc. Be sure to include on the list your return home. Consider giving your youngster a task to complete during the trip, or having him assist you. At all times, maintaining consistency is a key concern. It pays to ensure that others involved in your youngster's care are familiar with your strategies and techniques and are able to apply them.

Lastly, don't hesitate to seek support networks for parents with ASD kids, and take advantage of the wealth of knowledge those who have dealt with the disorder before you have developed. The assistance you can gain from these and other resources can assist you in developing important strategies to deal with problems in a manner most beneficial to your youngster.
 

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When and How to Tell Children They Have Asperger's

Image Source: Pixabay

 

Discovering that your child has Asperger’s is a challenging situation for any parent. You may feel worried or overwhelmed, unsure of how to tell your child about their diagnosis. While it’s natural to feel anxious, it’s essential to have a conversation with your child. Your child has the right to know and understand why they might be different from their peers. As a parent, it's your responsibility to ensure your child receives the support they need. In this post, we’ll explore when and how to tell your child about their Asperger’s diagnosis.

Age and Maturity

While there is no right time, experts suggest that it’s best to have the conversation before your child enters adolescence. Children are aware of their differences early on, and if you delay the conversation for too long, they may develop feelings of confusion and isolation.

Children with Asperger's may already be aware of their difficulties in certain areas, like social interactions, making friends, or coping with sensory processing issues. By talking openly with your child, you can help them understand their particular needs and how to get the right support at school, home, and in other areas of their lives.

Respect Your Child’s Processing Style

A child's processing style should always be respected, especially when it comes to communicating that they have Asperger's. It's essential to approach this topic with sensitivity, compassion, and understanding. It’s important to offer simple explanations that cater to their developmental level and individual needs. You should even consider getting advice from a family nurse practitioner on how to handle this.

 

Take the time to listen and observe their reactions. Explain things as best you can in a reassuring tone, so your child feels comforted and supported while they process this new information. As adults, we play an important role in helping our children adjust to life with Asperger’s, and respecting their processing style is a crucial part of this journey.

How to Explain to Your Child

You need to prepare yourself first. Take some time to learn about Asperger’s, its symptoms, and how it affects your child. You may want to seek support from a therapist, counselor or support group. Gather your thoughts, practice what you’re going to say, and choose a time when you and your child are relaxed. Try to avoid distractions and create an atmosphere that is calm and focused.

 

When having the Asperger’s talk, avoid using complex medical jargon, instead, use simple language that your child can understand. You could start by explaining what Asperger's is: "Some people’s brains work differently, and that’s okay." Then you could share more specific examples of your child’s difficulties and differences, and how they make your child unique. You can also mention that many successful people, like Albert Einstein, have been diagnosed with Asperger's.

 

It’s also essential to emphasize that the diagnosis does not change who your child is or their worth. Explain that the diagnosis is just a label that can help people understand them better, and it opens up more resources and support available to them. End the conversation with an opportunity for your child to ask questions or share their thoughts and feelings. Listen to your child without judgment, and reassure them that you will continue to support them as they navigate their journey with Asperger’s.

Endnote

Telling your child about their Asperger’s diagnosis is a genuine expression of love and acceptance. While the conversation may feel challenging, it’s an essential step towards helping your child feel seen, heard, and supported. Remember to approach the conversation with an open mind, create a safe and relaxed environment, use simple language, and most importantly, listen to your child. By doing so, you can help your child navigate their Asperger’s journey with confidence and self-love.

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