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Navigating the Journey: Stages a Parent Goes Through Upon Learning Their Child Has ASD

Receiving a diagnosis of Autism Spectrum Disorder (ASD) for a child can be a life-altering moment for any parent. The journey is often marked by a complex range of emotions and stages, similar to the well-known Kübler-Ross five stages of grief. Understanding these stages can provide insight into the experience of parents as they process the diagnosis and learn to adapt to their new reality.

1. Shock and Denial

The first stage a parent often experiences is shock and denial. This initial reaction is a natural defense mechanism against overwhelming news. Parents may find themselves in a state of disbelief, struggling to accept that their child has been diagnosed with ASD. Questions race through their minds: “How can this be true?”, “What does this mean for my child's future?”, or “Is this really happening?” During this time, parents might search for second opinions or seek to minimize the severity of the diagnosis.

2. Anger

Once the shock begins to fade, parents may experience anger. This anger can manifest in many forms: anger towards themselves, the system, or even the world at large. They might feel frustration towards the perceived inadequacies of healthcare professionals, educational systems, or societal attitudes towards autism. Often, parents grapple with feelings of injustice, wishing the circumstances were different. This anger can be directed inward, leading to feelings of guilt for not being able to prevent the diagnosis or sadness for the loss of the "typical" parenting experience.

3. Bargaining

After the initial tumult of anger, parents may enter a bargaining stage. This stage involves attempts to regain a sense of control or normalize the situation. Parents might find themselves thinking, “If I just try harder at parenting, or if we attend more therapy sessions, perhaps things will improve.” They seek solutions, hoping to change the diagnosis or alleviate symptoms. This stage often comes with searching for therapies, diets, or therapies that could "cure" ASD, reflecting a deep desire to help their child lead a typical life.

4. Depression

As the reality of the diagnosis sinks in, many parents experience a profound sense of sadness or depression. This stage can be filled with feelings of hopelessness and uncertainty about the future. Parents may mourn the dreams they had for their child and the expectations they held about typical milestones. This period often leads to reflection on the challenges their child will face and how their own lives will change as a result. Parents may isolate themselves, feeling misunderstood by others who don’t fully grasp what ASD entails.

5. Acceptance

The final stage that parents often reach is acceptance. Acceptance doesn’t mean that the journey is over or that all difficulties have vanished. Instead, acceptance involves coming to terms with the diagnosis and embracing the uniqueness of their child. Parents may seek support from local or online communities, finding solace in connecting with others who share similar experiences. They often learn about autism and advocacy, becoming empowered to seek the best resources for their child. Acceptance can lead to a renewed focus on celebrating achievements, however small, and finding joy in the unique abilities and contributions their child can offer.

Emotional Growth

The journey through these stages is not linear, and parents may cycle back through them multiple times as they face new challenges or milestones in their child's life. Importantly, while these stages are common, every parent’s experience is unique, shaped by their personal circumstances, support systems, and children.

Support and Resources

During this journey, parental support is crucial. Many organizations provide resources, whether they be informational websites, local support groups, or parenting workshops. Information helps demystify ASD, providing parents with tools to help their children thrive. Connecting with other parents who face similar challenges can also provide emotional support, sharing successes and strategies that can lead to personal and collective empowerment.

Conclusion

The journey of learning that one’s child has ASD is filled with various emotions, each playing a vital role in how a parent adapts to this new reality. While the process can be daunting and filled with uncertainty, it also has the potential to lead to profound personal growth and understanding. The acceptance stage offers not just a resolution to the emotional turmoil but a pathway toward a more hopeful future, advocating for better understanding and inclusion of children with autism in society. Ultimately, it emphasizes the importance of love, resilience, and the unbreakable bond between parent and child, regardless of the challenges they may face together.


 
 
More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

---------------------------------------------------------------

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

--------------------------------------------------------------

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

------------------------------------------------------------

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

------------------------------------------------------------

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here to read the full article...

------------------------------------------------------------

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...
 
------------------------------------------------------------
 
A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

Click here for the full article...

 


By

The Challenges Faced by Teenagers with Autism Spectrum Disorder (ASD)

As the incidence of Autism Spectrum Disorder (ASD) continues to rise, it has become increasingly important to understand the challenges faced by teenagers on the spectrum. 
 
Navigating adolescence is a daunting task for all teens, but those with ASD face unique hurdles that can affect their emotional, social, and academic development. This article will delve into the multifaceted challenges that ASD teenagers encounter today.

 1. Social Interaction Difficulties

One of the most profound challenges faced by teenagers with ASD is social interaction. Social cues, body language, and the nuances of peer communication can be perplexing for these individuals. Many teenagers with ASD may struggle to initiate conversations, read social signals, or maintain friendships. This can lead to feelings of isolation and loneliness. Adolescents are often keenly aware of their differences compared to their peers, which can exacerbate feelings of exclusion.

Moreover, social expectations during the teenage years become more complex, often involving nuances in relationships, dating, and group dynamics. For a teenager with ASD, understanding and navigating these evolving social landscapes can be particularly overwhelming, leading to social anxiety or withdrawal.

 2. Bullying and Peer Victimization

Teenagers with ASD are particularly vulnerable to bullying. Their differences in communication and behavior can sometimes make them targets for bullies, leading to increased rates of victimization. This bullying can take various forms, including verbal abuse, social exclusion, and physical intimidation.

Victims of bullying often face significant mental health challenges, including depression, anxiety, and even suicidal thoughts. The impact of bullying can deter teenagers with ASD from engaging in social settings or school activities, further isolating them and negatively affecting their self-esteem and mental well-being.

 3. Academic Challenges

Academic performance can also be a significant challenge for teenagers with ASD. Many students with ASD have average to above-average intelligence, yet they may struggle with executive functioning skills, organization, and time management. The school environment can be chaotic and overwhelming, leading to difficulties in focusing and processing information.

Additionally, standard educational practices do not always account for the specific needs of students with ASD. Some may require tailored teaching methods or accommodations that are not readily provided. The lack of understanding and support from educators can hinder academic success and lead to frustration and disengagement from school.

 4. Co-Occurring Mental Health Issues

The prevalence of mental health issues is notably higher among teenagers with ASD compared to their neurotypical peers. Common co-occurring conditions include anxiety disorders, depression, and attention-deficit hyperactivity disorder (ADHD). The pressures of adolescence, coupled with the intrinsic challenges of ASD, can lead to increased vulnerability to mental health issues.

Support systems, including counseling and therapy, are essential for helping these individuals cope with their feelings and experiences. However, access to mental health services can be limited, particularly in areas lacking specialized professionals familiar with ASD.

 5. Transitioning to Adulthood

As teenagers with ASD approach adulthood, they face significant challenges related to transitioning into independent living, vocational training, and post-secondary education. The transition process can be chaotic and daunting, requiring guidance and planning. Many teenagers with ASD may not receive adequate vocational training that matches their skills and interests, making the shift to the workforce difficult.

Furthermore, the lack of community programs for individuals with ASD can leave many teenagers without the necessary support to navigate adulthood successfully. This transition period can often be fraught with anxiety, uncertainty, and a fear of the unknown.

 6. Family Dynamics and Support

The challenges faced by teenagers with ASD also extend to their families. Parents and siblings may struggle to provide the emotional and practical support required by the teenager. Families often experience stress and anxiety regarding their child's future, leading to a complicated family dynamic.

Siblings may feel isolated, as they often bear the burden of understanding and accommodating their brother or sister's needs. Effective family communication and support networks are crucial for helping both teenagers with ASD and their families navigate these challenges.

 7. Lack of Awareness and Understanding

Despite increasing awareness of ASD, misconceptions and stereotypes persist. Teens with ASD may find themselves battling stereotypes that paint them as socially inept or overly reliant on routines. Such stereotypes can hinder their ability to form relationships and be accepted by their peers, as understanding of their unique abilities and perspectives may be lacking.

Educational institutions, workplaces, and communities must work toward greater inclusivity and understanding to create environments where teenagers with ASD can thrive. Increasing awareness can help foster acceptance and encourage neurotypical peers to engage positively with their ASD counterparts.

In summary, the challenges faced by teenagers with Autism Spectrum Disorder are numerous and complex, impacting various aspects of their lives. By understanding these challenges, society can take meaningful steps to support teenagers with ASD, ensuring they navigate adolescence with greater confidence, acceptance, and opportunities for success. Community resources, supportive educational environments, and a greater awareness of ASD can make a significant difference in the lives of these teens, allowing them to embrace their individuality and potential.

 
 
More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

---------------------------------------------------------------

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

--------------------------------------------------------------

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

------------------------------------------------------------

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

------------------------------------------------------------

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here to read the full article...

------------------------------------------------------------

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...
 
------------------------------------------------------------
 
A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

Click here for the full article...

By

Identifying the Beginning of Meltdowns in Autistic Children: Understanding the Signs and Providing Support

Meltdowns in autistic children can be distressing events for both the child and those around them. Recognizing the early signs can help caregivers and educators intervene effectively, providing the necessary support to deescalate the situation. Understanding the factors that contribute to meltdowns and identifying the triggers is crucial for promoting emotional regulation and overall well-being.

 What is a Meltdown?

A meltdown is an intense response to overwhelming situations, often characterized by an emotional or behavioral explosion. It is important to differentiate between a tantrum and a meltdown; while tantrums are often driven by a desire for a specific outcome, meltdowns arise from an inability to cope with overwhelming sensory, emotional, or situational inputs.

 Early Signs of Meltdowns—

Recognizing the early signs of a meltdown can be key to prevention or de-escalation. These signs may include:

1. Changes in Behavior: Subtle shifts may occur before a full meltdown. The child might exhibit increased agitation, such as fidgeting, pacing, or changes in facial expressions. Understanding these indicators requires familiarity with the child’s baseline behavior.

2. Sensory Overload: Many autistic children have heightened sensitivity to sensory inputs, such as bright lights, loud noises, or strong smells. If a child begins to cover their ears or squint their eyes, it may signal that they are becoming overwhelmed.

3. Withdrawal: Some children may react to overwhelming situations by withdrawing. This can involve retreating into themselves, becoming quiet, or seeking solitude. The child’s desire to isolate can be an early indicator that they need assistance.

4. Verbal Indicators: Pay attention to changes in language or communication. The child may express frustration or discomfort verbally, using phrases such as "I don't like this," or "I want to leave."

5. Physical Signs: Look for physical manifestations of stress, such as clenching fists, a flushed face, or a rapid heartbeat. These physical changes can be precursors, signaling that the child is struggling.

 Understanding Triggers—

Identifying specific triggers is crucial in understanding meltdowns. Triggers can vary widely among autistic children and may include:

  • Changes in Routine: Many autistic children thrive on predictability. Sudden changes in their routine can lead to anxiety and potential meltdowns.
  • Social Interactions: Situations involving large groups or unexpected social demands can overwhelm a child, causing distress. 
  • Environmental Factors: As mentioned, sensory overload from sounds, lights, and textures can be significant triggers.
  • Emotional Factors: Anxiety, sadness, or frustration can build up over time without adequate outlets, leading to a meltdown.


 Strategies for Prevention and Support—

Once caregivers recognize the signs of an impending meltdown and understand the specific triggers, they can implement strategies to help prevent these situations:

1. Sensory Breaks: Encourage regular breaks from overstimulating environments. Create a calming space where the child can retreat when feeling overwhelmed, equipped with comforting items like fidget toys or noise-canceling headphones.

2. Predictable Routines: Establish and communicate clear routines and transitions. Visual schedules can be beneficial, providing the child with a sense of structure and clarity about what to expect.

3. Modeling Emotional Regulation: Teach emotional regulation strategies, such as deep breathing or counting down from ten. Practicing these techniques during calm moments can empower the child to use them during stressful times.

4. Open Communication: Foster an environment where the child feels safe expressing discomfort or frustration. Encourage them to identify their feelings and articulate their needs.

5. Collaborating with Educators and Professionals: Engaging with teachers, therapists, and other caregivers can create a consistent approach to recognizing and responding to early signs of meltdowns. Communication is key to ensuring everyone involved understands the child's needs and triggers.

6. Building Coping Skills: Work with the child to develop coping mechanisms that they can utilize independently as they grow. This could include journaling, engaging in creative activities, or physical exercise.

In summary, identifying the beginnings of meltdowns in autistic children requires patience, observation, and understanding. By recognizing early signs and understanding the child’s triggers and preferences, caregivers can create supportive environments that minimize the occurrence of meltdowns. Emphasizing emotional regulation and communication helps prepare children for difficult situations, fostering resilience and coping skills for the future. Ultimately, with the right strategies in place, it is possible to reduce the frequency and intensity of meltdowns, enhancing the child’s overall quality of life.

 

 
 
More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

---------------------------------------------------------------

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

--------------------------------------------------------------

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

------------------------------------------------------------

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

------------------------------------------------------------

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here to read the full article...

------------------------------------------------------------

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...
 
------------------------------------------------------------
 
A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

Click here for the full article...

 

 

By

Understanding Theory of Mind Deficits in Autistic Children: Misbehavior or Misunderstanding?

The concept of "theory of mind" refers to the ability to understand that others have their own beliefs, desires, and intentions, which may differ from one's own. This cognitive skill is crucial for effective social interaction and communication. In children with autism spectrum disorder (ASD), deficits in theory of mind can sometimes manifest as behaviors that may be misinterpreted as misbehavior. Understanding these behaviors in the context of theory of mind can lead to more empathy and effective support for autistic children.


1. What Does Theory of Mind Look Like in Typical Development?

Typically developing children begin to exhibit theory of mind skills around the age of 2 to 3 years. They start to understand that others can have different thoughts, feelings, and perspectives. By the time children reach preschool age, they are often able to engage in simple forms of pretend play, empathize, and navigate social situations with increasing complexity.

2. Theory of Mind Deficits in Autistic Children

For many autistic children, developing a robust theory of mind can be challenging. This doesn't mean they lack intelligence or awareness; rather, they may struggle to interpret social cues and understand the perspectives of others. This can influence their interactions in several ways:

**Difficulty with Empathy**: Autistic children may find it hard to recognize when someone else is upset or to respond appropriately. This can lead to behaviors that seem indifferent or rude, but are actually rooted in a lack of understanding.

**Literal Interpretation**: Many autistic individuals interpret language literally. This can result in misunderstandings during conversations, where a child may fail to grasp sarcasm or idioms, leading to what could be perceived as inappropriate reactions.

**Challenges in Pretend Play**: Engaging in imaginative play often requires the ability to step outside one’s own perspective. Autistic children might find it difficult to engage in role-playing games, which could be misconstrued as unwillingness to participate or misbehavior.

3. Misunderstanding Misbehavior

When an autistic child exhibits behaviors often labeled as "misbehavior," it could be a manifestation of their theory of mind deficits. For instance:

**Social Withdrawal**: Rather than acting out, some children may withdraw from social interactions because they feel overwhelmed. This is often interpreted as disinterest or defiance.

**Tantrums and Outbursts**: When faced with changes in routine or overwhelming sensory environments, an autistic child may exhibit behaviors like crying or screaming. These reactions are often not attempts to misbehave but rather responses to anxiety rooted in the inability to predict how others will respond or to communicate distress.

**Inappropriate Responses**: A child might laugh at a sad story or fail to show concern when a peer is hurt. Such reactions can be misinterpreted as a lack of empathy, even though they may be seeking to understand the situation in their own way.

4. Strategies for Support

To better address these misunderstandings, caregivers and educators can consider the following strategies:

**Education and Awareness**: Teaching peers about autism can foster a more inclusive environment where differences are understood rather than judged. This awareness can help children see beyond behaviors that seem inappropriate.

**Explicit Teaching of Social Skills**: Using structured teaching methods to explain social norms and expectations can help autistic children navigate social situations more effectively.

**Encouraging Expression**: Providing alternative ways for children to express themselves—whether through art, writing, or supported communication—can alleviate frustration and reduce instances of what may be perceived as misbehavior.

**Patient Guidance**: Displaying patience and offering gentle guidance in social situations can help a child learn how to read cues and respond appropriately over time.

In summary, recognizing that theory of mind deficits in autistic children may lead to behaviors that look like misbehavior is essential for fostering understanding and support. By viewing these behaviors through a lens of empathy and education, we can create a more inclusive environment that allows all children to thrive, regardless of their differences. Emphasizing understanding over judgment not only benefits autistic children but enriches the entire community as a whole.

 

 
 
More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

---------------------------------------------------------------

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

--------------------------------------------------------------

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

------------------------------------------------------------

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

------------------------------------------------------------

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here to read the full article...

------------------------------------------------------------

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...
 
------------------------------------------------------------
 
A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

Click here for the full article...

 

By

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.

 

By

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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ASD Meltdown-Management: Key Points for Parents of Kids on the Autism Spectrum

A meltdown is a condition where the youngster with ASD level 1, or High Functioning Autism, temporarily loses control due to emotional responses to environmental factors. It generally appears that the youngster has lost control over a single and specific issue, however this is very rarely the case. 

Usually, the problem is the accumulation of a number of irritations which could span a fairly long period of time, particularly given the strong long-term memory abilities of young people on the autism spectrum.

Why The Problems Seem Hidden—

ASD kids don't tend to give a lot of clues that they are very irritated:
  • Often ASD child-grievances are aired as part of their normal conversation and may even be interpreted by NTs (i.e., neurotypicals, or people without autism) as part of their standard whining.
  • Some things which annoy ASD kids would not be considered annoying to NTs, and this makes NT's less likely to pick up on a potential problem.
  • Their facial expressions very often will not convey the irritation.
  • Their vocal tones will often remain flat even when they are fairly annoyed.

What Happens During A Meltdown—

The meltdown appears to most people as a temper tantrum. There are marked differences between adults and kids. Kids tend to flop onto the ground and shout, scream or cry. Quite often, they will display violent behavior such as hitting or kicking.

In adults, due to social pressures, violent behavior in public is less common. Shouting outbursts or emotional displays can occur though. More often, it leads to depression and the ASD man or woman simply retreats into themselves and abandons social contact.

Some ASD kids describe the meltdown as a red or grey band across the eyes. There is a loss of control and a feeling of being a powerless observer outside the body. This can be dangerous as the ASD youngster may strike out, particularly if the instigator is nearby or if the "Aspie" is taunted during a meltdown.

Depression—

Sometimes, depression is the only outward visible sign of a meltdown. At other times, depression results when the ASD youngster leaves the meltdown state and confronts the results of the meltdown. The depression is a result of guilt over abusive, shouting or violent behavior.

Dealing With Meltdowns—

Unfortunately, there's not a lot you can do when a meltdown occurs in a child on the autism spectrum. The best thing you can do is to train yourself to recognize a meltdown before it happens and take steps to avoid it.

Example from one mother: "ASD kids are quite possessive about their food, and my autistic child will sometimes decide that he does not want his meat to be cut up for him. When this happens, taking his plate from him and cutting his meat could cause a full-blown meltdown. The best way to deal with this is to avoid touching it for the first part of the meal until he starts to want my involvement. When this occurs, instead of taking his plate from him, it is more effective to lean over and help him to cut the first piece. Once he has cut the first piece with help, he will often allow the remaining pieces to be cut for him."

Once the youngster reaches an age where they can understand (around age 4 or so), you can work on explaining the situation. One way you could do this would be to discreetly videotape a meltdown and allow them to watch it at a later date. You could then discuss the incident, explain why it isn't socially acceptable, and give them some alternatives.

One adult "Aspie" stated the following:

"When I was little, I remember that the single best motivation for keeping control was once when my mother called me in after play and talked about the day. In particular, she highlighted an incident where I had fallen down and hurt myself. She said, 'Did you see how your friend started to go home as soon as you fell down because they were scared that you were going to have a meltdown?' She went on to say, 'When you got up and laughed, they were so happy that they came racing back. I'm proud of you for controlling your emotions.' That was a good moment for me that day. It really gave me some insight into how I tended to respond quickly without much forethought. I carried this with me for years later and would always strive to contain myself. I wouldn't always succeed, but at least I was trying."

Meltdowns And Punishment—

One of the most important things to realize is that meltdowns are part of the ASD condition. You can't avoid them; merely try to reduce the damage. Punishing an ASD youngster for a meltdown is like punishing someone for swearing when they hit their thumb with a hammer. It won't do any good whatsoever and can only serve to increase the distance between you and your youngster.

In addition, meltdowns aren't wholly caused by the current scenario, but are usually the result of an overwhelming number of other issues. The one which "causes" the meltdown is the straw that breaks the camel’s back. Unless you're a mind reader, you won't necessarily know what the other factors are, and your ASD youngster may not be able to fully communicate the problem.

Every teacher of ASD students and every mom or dad of an ASD child can expect to witness some meltdowns. On average, meltdowns are equally common in boys and girls, and more than half of autistic kids will have one or more per week.

At home, there are predictable situations that can be expected to trigger meltdowns, for example:
  • bath time
  • bedtime
  • car rides
  • dinner time
  • family activities involving siblings
  • family visiting another house
  • getting dressed
  • getting up
  • interactions with peers
  • mom or dad talking on the phone
  • playtime
  • public places
  • visitors at the house
  • watching TV

Other settings include:
  • answering questions in class
  • directives from the teacher
  • getting ready to work
  • group activities
  • individual seat work
  • interactions with other children
  • on the school bus
  • the playground
  • transitions between activities

From time to time, all ASD kids will whine, complain, resist, cling, argue, hit, shout, run, and defy authority figures. Meltdowns, although normal, can become upsetting to parents and teachers because they are embarrassing, challenging, and difficult to manage. Also, meltdowns can become particularly difficult to manage when they occur with greater frequency, intensity, and duration than is typical for the age of the ASD kid.

There are nine different types of temperaments in kids on the spectrum:

1. Distracted temperament predisposes the kid to pay more attention to his or her surroundings than to the caregiver.

2. High-intensity level temperament moves the kid to yell, scream, or hit hard when feeling threatened.

3. Hyperactive temperament predisposes the kid to respond with fine- or gross-motor activity.

4. Initial withdrawal temperament is found when kids get clingy, shy, and unresponsive in new situations and around unfamiliar people.

5. Irregular temperament moves the kid to escape the source of stress by needing to eat, drink, sleep, or use the bathroom at irregular times when he or she does not really have the need.

6. Low sensory threshold temperament is evident when the kid complains about tight clothes and people staring and refuses to be touched by others.

7. Negative mood temperament is found when kids appear lethargic, sad and lack the energy to perform a task.

8. Negative persistent temperament is seen when the kid seems stuck in his or her whining and complaining.

9. Poor adaptability temperament shows itself when kids resist, shut down, and become passive-aggressive when asked to change activities.

Around age 2, some ASD kids will start having what I refer to as "normal meltdowns." These bouts can last until approximately age 4. Some parents (thinking in terms of temper tantrums) mistakenly call this stage "the terrible twos," and others call it "first adolescence" because the struggle for independence is similar to what is seen during adolescence. Regardless of what the stage is called, there is a normal developmental course for meltdowns in children on the autism spectrum.

Children on the spectrum  during this stage will test the limits. They want to see how far they can go before mom or dad stops their behavior. At age 2, ASD kids are very egocentric and can't see another person’s point of view. They want independence and self-control to explore their environment. When they can't reach a goal, they show frustration by crying, arguing, yelling, or hitting. When their need for independence collides with the parents' needs for safety and conformity, the conditions are perfect for a power struggle and a meltdown. 

A meltdown is designed to get the parents to desist in their demands or give the child what he or she wants. Many times, ASD kids stop the meltdown only when they get what is desired. What is most upsetting to parents is that it is virtually impossible to reason with ASD kids who are having a meltdown. Arguing and cajoling in response to a meltdown only escalates the problem.

By age 3, many young people on the spectrum are less impulsive and can use language to express their needs. Meltdowns at this age are often less frequent and less severe. Nevertheless, some preschoolers have learned that a meltdown is a good way to get what they want.

By age 4, most ASD kids have the necessary motor and physical skills to meet many of their own needs without relying so much on the parent. At this age, these young people also have better language that allows them to express their anger and to problem-solve and compromise. Despite these improved skills, even kindergarten-age and school-age ASD kids can still have meltdowns when they are faced with demanding academic tasks and new interpersonal situations in school.

It is much easier to “prevent” meltdowns than it is to manage them once they have erupted.  Here are some tips for preventing meltdowns and some things you can say:

1. Avoid boredom. Say, “You have been working for a long time. Let’s take a break and do something fun.”

2. Change environments, thus removing the child from the source of the meltdown. Say, “Let’s go for a walk.”

3. Choose your battles. Teach them how to make a request without a meltdown and then honor the request. Say, “Try asking for that toy nicely and I’ll get it for you.”

4. Create a safe environment that these children can explore without getting into trouble. Childproof your home or classroom so they can explore safely.

5. Distract them by redirection to another activity when they meltdown over something they should not do or can't have. Say, “Let’s read a book together.”

6. Do not "ask" ASD kids to do something when they must do what you ask. Do not ask, “Would you like to eat now?” Say, “It's dinnertime now.”

7. Establish routines and traditions that add structure. For teachers, start class with a sharing time and opportunity for interaction.

8. Give these children control over little things whenever possible by giving choices. A little bit of power given to the kid can stave-off the big power struggles later (e.g., “Which do you want to do first, brush your teeth or put on your pajamas?”).

9. Increase your tolerance level. Are you available to meet the ASD kid’s reasonable needs? Evaluate how many times you say, “No.” Avoid fighting over minor things.

10. Keep a sense of humor to divert the child's attention and surprise him or her out of the meltdown.

11. Keep off-limit objects out of sight and therefore out of mind. In an art activity, keep the scissors out of reach if the child is not ready to use them safely.

12. Make sure that ASD kids are well rested and fed in situations in which a meltdown is a likely possibility. Say, “Dinner is almost ready, here’s a cracker for now.”

13. Provide pre-academic, behavioral, and social challenges that are at the ASD kid’s developmental level so that he or she doesn't become frustrated.

14. Reward them for positive attention rather than negative attention. During situations when they are prone to meltdowns, catch them when they are being good and say things like, “Nice job sharing with your friend.”

15. Signal them before you reach the end of an activity so that they can get prepared for the transition. Say, “When the timer goes off 5 minutes from now, it will be time to turn off the TV and go to bed.”

16. When visiting new places or unfamiliar people, explain to the child beforehand what to expect. Say, “Stay with your assigned buddy in the museum.”

There are a number of ways to “handle” a meltdown that is already underway.  Strategies include the following:

1. Hold the ASD  kid who is out of control and is going to hurt himself or herself (or someone else). Let the child know that you will let him or her go as soon as he or she calms down. Reassure the child that everything will be all right, and help him or her calm down. Moms and dads may need to hug their Aspergers kid who is crying, and say they will always love him or her no matter what, but that the behavior has to change. This reassurance can be comforting for an Aspergers kid who may be afraid because he or she lost control.

2. If the youngster has escalated the meltdown to the point where you are not able to intervene in the ways described above, then you may need to direct the child to time-out. If you are in a public place, carry your child outside or to the car. Tell him that you will go home unless he calms down. In school, warn the student up to three times that it is necessary to calm down, and give a reminder of the rule. If the student refuses to comply, then place him in time-out for no more than 1 minute for each year of age.

3. Remain calm and do not argue. Before you manage her, you must manage your own behavior. Punishing or yelling at the child during a meltdown will make it worse.

4. Talk with the child after he has calmed down. When he stops crying, talk about the frustration the he has experienced. Try to help solve the problem if possible. For the future, teach the child new skills to help avoid meltdowns (e.g., how to ask appropriately for help, how to signal an adult that he  needs to go to “time away” to “stop, think, and make a plan” ...and so on). Teach the Aspergers kid how to try a more successful way of interacting with a peer or sibling, how to express his feelings with words, and recognize the feelings of others without hitting and screaming.

5. Think before you act. Count to 10 and then think about the source of the ASD kid’s frustration, the child’s characteristic temperamental response to stress (e.g., hyperactivity, distractibility, moodiness, etc.), and the predictable steps in the escalation of the meltdown.

6. Try to intervene before the youngster is out of control. Get down at her eye level and say, “You are starting to get revved up, let's slow down.” Now you have several choices of intervention.

7. You can ignore the meltdown if it is being thrown to get your attention. Once the ASD kid calms down, you can give the attention that is desired.

8. You can place the youngster in "time away." Time away is a quiet place where he goes to calm down, think about what he needs to do, and with your help, make a plan to change the behavior.

9. You can positively distract the child by getting her focused on something else that is an acceptable activity (e.g., remove the unsafe item and replace with an age-appropriate game).

Post-Meltdown Management—

1. Do not reward the child after a meltdown for calming down. Some kids will learn that a meltdown is a good way to get a treat later.

2. Explain to the child that there are better ways to get what she wants.

3. Never let the meltdown interfere with your otherwise positive relationship with your child.

4. Never, under any circumstances, give in to a meltdown. That response will only increase the number and frequency of the meltdowns.

5. Teach the youngster that anger is a feeling that we all have, and then teach her ways to express anger constructively.


Best Comment—

My name is Sharon, I have been with Elliott for over ten years and we have a son Brandon who is 6 yr old. They both have aspergers syndrome we are awaiting Brandon’s appointment with the paediatrician consultant for diagnosis, but I am 110% sure it will be aspergers. I am feeling in the thick of it of late I have and am constantly looking for local support and forums online etc to reach out for guidance and any support also to offer my own support to others. I am a person centred therapist and in the past have worked in supporting children and adults on the autistic spectrum, I do have a good insight into the autistic spectrum but nothing prepares you for how it feels actually living 24/7 with it.

Firstly the biggest part for me is the heart break and hurt I feel for my son, then the worry and concern how he will get along in life. I am very pro active and of late have worked well with school to best advise them how we support Brandon’s needs it’s been an uphill struggle for the last year especially as they don't seem to have the knowledge or the amenities to support him.

I have been called to school several times of late because of his "disruptive" behaviour,, basically his stimming he does get louder if in a louder environment the teachers know this is a trigger and he is left alone to deal with this instead of being prepared for a change of noise or scenery or even a much needed teaching assistant who could work alongside him. If he gets too disruptive he is taken out of the class environment for "time out" is this a good way of dealing with it? As we have told school time out at home is if he is naughty, which generally he is never naughty. we have what we call quiet time at home where sometimes when he feels over load we just find a quiet place to sit together and relax or read whatever he wants really but it brings him down and more settled to cope better.

Again it will mean another meeting or ten..... To resolve or make a better learning environment for Brandon. They say they can’t do anything till he’s been statemented and funded for an assistant or further support. But they will assist him as best they can and I do feel listened to but there is of late something new nearly every day that needs adaption which imp fine with I am aware he defiantly needs some support. I have been on an emotional roller coaster.

It feels so isolating as support around this neck of woods is minimal. Brandon’s upset of late is his lack of friends he just wants his family to be at school all day every day his words because we love him! So the social aspect this is. So I discussed with head teacher and she has set a buddy system up for him its yet to be seen to be working, as I know how difficult it is for Brandon to mix and communicate with his peers and when he does he gets rejected.

We have tried so many routes with this he seems to connect with kids in play areas as he and they are generally being quite boisterous but its time limited so he feels less pressure. We are also in process of groups i.e. dancing as he loves to dance (street dance) and maybe other recreations of his choice. It feels like a very long a winding road what we are on I know I haven't spoke much bout Elliott having spent ten years with him would have thought Brandon’s aspergers may come easier to me understanding wise yes but on a personal level it’s so upsetting.

Other points are his eating habits he is a very bland eater and eats the same few foods we supplement with vitamins he is quite small in frame but eats quite well the foods he does enjoy think they call it the beige diet he has no colour in his food at all (pasta, no sauce, chicken nuggets, crisps plain flavour, crumpets, bread, some types of rice, certain chocolate, milk, Yorkshire puddings) there’s a few more but as you can see limited. We have tried so many different ways to entice him I would be grateful if you could give me any tips.

Feels like I am going on now, the list goes on his sensory issues really do dictate to him and us how the day goes sometimes, and he is becoming more and more aware of his stims and repetitive behaviour today its clapping and repeating words it was a machine gun noise (constantly)and random moves it varies from day. I feel I need more guidance in how to help/support Brandon. The melt downs are becoming more and more but he only does this with his dad I have a calming effect as soon as he starts in melt down they pretty much calm after I’ve been around him a few minutes. The routines he has etc seem to help a lot too.

If you can pull anything out of this letter and feedback I would be grateful there will be things I have missed but feel free to ask me any further questions. He also as 3 older step siblings 15, 19, 21 and they are very loving and supportive with him and very understanding. He as a great relationship with all of us in our family unit. Feels like the outside world is a daunting prospect right now.

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