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Noticing "Troubled" Aspergers Students Before Tragedy Occurs

To all parents of children and teens affected by Aspergers and High Functioning Autism:

There is someone who spends almost as much time with your child as you do. But, this person may not understand your child’s disorder and related symptoms. Also, this person may not pick up on subtle signs and signals that a particular child is becoming “troubled.” This person is your child’s teacher.

Make no mistake: I’m not blaming teachers for what happened on 12/14/12 (i.e., the Adam Lanza tragedy). But I strongly believe that one of the most important resources that we have to see to it that nothing like 12/14 ever happens again is our teachers. Even though there is growing awareness about autism spectrum disorders in the educational system, much misinformation and lack of information still exists. And this is where you, the parent, can help.

Please email your child’s teacher(s) with the link to this post…




Advise the teacher(s) that they can download the following eBook once, and then they have permission to print as many copies as they want: Teaching Students With Aspergers & High-Functioning Autism

It is hoped that they will print dozens of copies and disseminate throughout your entire local school system. If you child's teachers have any questions about this offer, please let them know they can email me personally (Mark Hutten, M.A. ==> mbhutten@gmail.com).

If a student with Aspergers or High Functioning Autism is going to deteriorate, this change for the worse usually begins when he or she enters the public school system. So in many ways, our first line of defense against having a “functional” child turn into a “troubled” child is our teachers. They must learn about this disorder and know how to deal effectively with the affected student in the classroom!

 Online Parent Support, LLC
BEST COMMENT:
Thank you. How generous and kind of you. Truly, i appreciate what you are doing and am touched by your action to reach out and help. Like you, i hope i can help to educate others more about aspergers so that life is a little more manageable for them and so they can learn the skills to overcome challenges, be healthy emotionally, and live a happy and fulfilled life. I am a former elementary school principal and, sadly, aware of how poorly equipped many educators are to deal with such a diverse learner. There are great teachers out there who havent been trained enough. Its hard with the large numbers and demands of other responsibilities. I do understand this, but we have an urgent responsibility and duty to NOT let these students fall through the cracks. My daughter, an aspie, frequently goes unnoticed. She is quiet, well behaved, etc, but the inner, hidden frustration is so very great as she struggles with academics, feeling overwhelmed, not understanding so many things that other students learn naturally just by being immersed in the context and by observation alone. No one really sees this on the surface. 

 Another thing that saddens me is the lack of emotional support for all students. Counselors are usually only part time and overloaded. The good ones intervene with students alone and in groups but others work traditionally with whole group classroom lessons and nice but unnecessary schoolwide activities. (the "feel-good stuff!) We need to use our resources, especially our wonderful mental health counselors, more wisely and prioritize our needs. We need funding and involvement that crosses the great divide btwn school and the outside community. Our efforts are oftentimes so disjointed. Just think of what we could do if everyone worked together - psychiatrists, schools, churches maybe,    Psychologists, etc.

 Again, i thank you. You are helping a lot of people and the knowledge gained from you will just continue to grow exponentially as it is applied to and shared with others. 

 As always, your article/link/mission, both timely and helpful.  Sincerest thanks and spreading the good word.  



MORE COMMENTS:

•    Anonymous said... And this is why I homeschool!
•    Anonymous said... Hence why school never worked. So, learning at home and in the community it is. And it is wonderful.
•    Anonymous said... Home school all the way! It's not worth putting my son thru the torment of public school. I'll keep him at home to educate him & know what's going on. There fore he won't be bullied be other students & even some teachers.
•    Anonymous said... Home schooling was the best decision we made. I feel so bad for my son cause of what the school put him thru. Made him feel like something is wrong with him shame on them!!!
•    Anonymous said... I agree with protecting your child - i removed mine from public and placed him into private - he's blossomed there and is SO happy to be with kids like him finally!!! He has never tried to stay home ONCE since being in the new school.. I considered home school but I also had to consider his social skills - and keeping him home/sheltered would have been such a detriment to building important life skills that he can only learn while being in school.... Also it's vitally important to ensure the child is receiving a proper education too.... I hope for the child's sake they are receiving tutors if the parents aren't suitable to teach as a certified teacher would. After reading some posts - here and other sites, some parents can't speak proper English - let alone spell it!! So can you IMAGINE what the child is learning - or isn't I should say.... Love your baby first and foremost - the rest will all work out
•    Anonymous said... just reminds me once again why I made the decision to home education my high functioning teenage daughter - one year in secondary school did enough damage that has taken us 9 months to slowly get her to recover from.
•    Anonymous said... My son has the best & most supportive teacher - i believe its up to you as a parent to inform the school & keep in the loop…
•    Anonymous said... One of the reasons I am homeschooling now is the teachers were not interested in understanding my son
•    Anonymous said... Until schools get rid of tenure and can fire bad teachers, our students will suffer (a former teacher who saw too many bad eggs). Luckily our school staff is wonderful, helps him learn social skills and use resources to stop the bullying. But it is still a game of wills if I want to switch teachers mid-year. Luckily he is on the staff's radar.

Post your comment below…
By

Learning Your Child’s “Triggers”: Help for Destructive Behavior in Kids on the Autism Spectrum

"We are in need of some strategies to curb our son's destructive behaviors, which usually vacillates between periods of being quiet and withdrawn to periods of full out tantrumming (yelling, throwing things)."

Destructive behavior (e.g., hitting and kicking, throwing objects, damaging property, screaming, etc.) is common in some kids with Aspergers and High-Functioning Autism (HFA). This type of behavior can be disturbing and possibly dangerous, and requires a specific parenting approach as well as additional supervision to ensure the safety of everyone involved. 
 
Since children on the spectrum do not respond well to traditional disciplinary strategies, parents must come up with an approach that doesn't accidentally reward unwanted behavior.

While the disorder is incurable, learning and development is possible with the proper treatment and education. Moms and dads should embrace early intervention opportunities whenever possible, as these can help kids develop strategies for dealing with some of the more challenging behaviors associated with Aspergers and HFA. In addition to developing coping mechanisms for destructive behavior, early intervention can help provide a greater degree of independence as these youngsters get older.



Kids on the autism spectrum generally have specific “triggers” that signal danger or disruption to their feelings of comfort and security. These young people tend to develop their own “cues” in response to these trigger events (i.e., warning signals that parents can “read” to understand that the youngster is having difficulty).  These cues may include any of the following:
  • becoming quiet or withdrawn
  • changes in speech patterns
  • complaining
  • exhibiting a fear or avoidance response
  • facial expressions
  • feeling ill
  • getting irritable
  • nervous tics
  • sweating

When parents anticipate these triggers or observe these cues, they should provide assurance, support and attention as quickly as possible. If parents miss these cues, kids on the spectrum may escalate their behavior to a point where they completely lose control.  
 
==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

Because parents and teachers see kids in different situations, it is essential that they work together to share information about triggers and cues. This is best done on a regular basis (e.g., during the IEP meeting or a periodic review meeting) rather than in response to a crisis. However, when a crisis does occur, those who work with the youngster should meet to briefly discuss specific concerns and how to best address his/her needs in the current situation.

Tips for reducing and eliminating destructive behavior in children on the autism spectrum:

1. Aspergers and HFA kids have difficulties with social skills and self-management, and will need instruction in anger-control, tolerance of individual differences, and self-monitoring.

2. Children with the disorder interpret very literally; therefore, moms and dads need to choose their words carefully to insure their youngster will not misinterpret what they are trying to get across.

3. Consider changing your child’s diet. A gluten-free/casein-free diet is a popular diet for aggressive kids on the spectrum. Gluten is a protein found in wheat, rye, barley and some oats, and casein is a protein found in milk.

4. Eliminate sensory issues. If your youngster has sensory issues that are overwhelming, he can become aggressive. Loud noises, bright lights, lots of people, and irritating touches often cause problems for some of these young people An occupational therapist can help by doing a Sensory Profile to determine if your youngster has any sensory defensiveness.

5. Food allergies are an often overlooked cause of destructive behavior. Some children may have red ears, red cheeks, or dark circles under their eyes. These are often signs of food allergies. Some of the symptoms associated with food allergies are headaches, tantrums, feelings of nausea, difficulty concentrating, and stomach aches. As a result, the youngster is less tolerant of others and is more likely to act out. Since many of these kids also have poor communication skills, parents may not be aware that their son or daughter is not feeling well. The youngster should be tested if food allergies are suspected. If the child tests positive for certain foods, then these products should be eliminated from the diet.




6. Give your child the opportunity and space to calm down when he’s upset. If he needs to release some physical energy, find some non-destructive activities he can engage in.

7. Let your youngster know he can count in his head until the negative feeling goes away. This will help him realize that eventually the feeling does start to alleviate on its own, even if he doesn’t act on it.

8. Make sure your youngster understands that, while you understand he gets frustrated sometimes, destroying property is not acceptable – not in your home, or in the rest of the world either. Be clear in your expectations and what the consequences will be if he does destroy property.

9. Many children with the disorder can be helped to comprehend behavior they observe - but poorly understand - through the use of “social stories.” The parent’s explanation of what is happening can be reduced to a social story. A storybook can then be kept by the youngster to help reinforce the information on a concrete, basic level. 
 
==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder

10. Many parents are giving their autistic kids safe nutritional supplements, such as Vitamin B6 with magnesium and Di-methyl-glycine (DMG). Nearly half have reported a reduction in behavioral problems as well as improvements in their youngster’s general well-being.

11. Moms and dads often feel furious when their youngster damages or destroys property. This is understandable. Property destruction is a personal violation, and it hurts to have a son or daughter treat something that you’ve worked hard for with such little respect. But, once you make up my mind that you will hold your child accountable for anything he purposely destroys, making sure he pays for things by controlling the money you usually chose to spend on him, you won’t feel as angry. You will be able to respond more calmly, because you know he will be held accountable. And once he learns that he pays for the damages, it may only take a few times for him to choose to handle things differently.

12. Often times, a behavior problem is a reaction to a request or demand made by parents. The child may have learned that he can escape or avoid such situations (e.g., doing chores or homework) by acting out. A functional assessment of the child’s behavior (i.e., antecedents, consequences, context of the behavior) may reveal certain relationships between the behavior and the function the behavior serves. If avoidance is the function the behavior serves, parents should follow through with all requests and demands they make to the child. If the child is able to escape or avoid such situations, even only some of the time, the behavior problem will likely continue.

13. Remember that any change in routine may result in emotional or behavioral upset. If the youngster’s environment must be changed (e.g., the absence of a parent), try to maintain as much of the normal routine as possible (e.g., meals, play, bedtime) in the new environment.  In addition, try to bring concrete elements from the youngster’s more routine environment (e.g., a toy, blanket, game, etc.) into the new environment to maintain some degree of “sameness” or constancy.

14. Some kids break their own things when they’re upset or angry. If your youngster gets angry, throws his iPad and it breaks, the natural consequence is that he no longer has an iPad. Don’t buy him a new one!

15. Talk with your youngster during a calm moment about things he can do instead of breaking things when he gets upset.

16. Teach your youngster to use journaling, music, drawing, clay, or any other non-destructive activity he might be interested in to release feelings.

17. Try behavior intervention. Behavior specialists work with kids who have difficult and aggressive behaviors. They observe them in their environments to determine the underlying cause of the behaviors.

18. Your job as a mother or father is to prepare your youngster for the “real world.” In the real world, if you destroy property, there are consequences (e.g., financial, legal, etc.). You want to respond to your youngster’s destructive behavior in a way that leaves no doubt about what he will experience should he engage in this behavior outside your home.

19. It is important to consider the child’s level of arousal when formulating a strategy to treat behavioral problems:
  • Over-arousal. Sometimes behavioral problems occur when the child is overly-excited. This can occur when the child is anxious and/or when there is too much stimulation in the environment. In these cases, treatment should be aimed at calming the child.
  • Under-arousal. Behavioral problems may be due to a low level of arousal, such as when the child is passive or bored. Behaviors such as aggression and destructiveness may be exciting, and thus appealing to some of these kids. If parents suspect behavior problems are due to under-arousal, the child should be kept busy or active.

20. If all else fails, it may be necessary to try medication to reduce destructive behavior. Discuss medication with your youngster’s doctor, neurologist or behavior specialist. Determine as a team the best approach to treating him with the proper medication. Keep in mind that medication is not necessarily permanent, and if it doesn't work, just stop it.
 
COMMENTS:

•    Anonymous said... After many years and many different approaches, my 16 year old son with aspergers is finally learning to use words instead of fists! It isn't always perfect, but it is so much better.
•    Anonymous said... And DMG if others have had success. Son take 3meds but would like to think there is hope he could ween off prescription meds and with the therapy he is receiving g and maturation.....he could get by with less Rx' s.
•    Anonymous said... Curious...why the B6? Has anyone tried that, with positive results?
•    Anonymous said... Ditto everything Ms Musgrave said. Our 17 yr old was diagnosed at age 13-14, and now seems to be on a better path after yrs of anxiety and stress on both him and I. Would also be curious about the B6 and
•    Anonymous said... I have tried B6 with my son and it gave my son horrible nightmares to the point he would keep himself awake. I researched the vitamin to find out that it is actually a normal reaction. Everyone is different, I know this, but I want to give a heads up to anyone wanting to try it.
•    Anonymous said... It is so true about the disciplinary actions that parents try to enforce. They often work on other siblings, but when it comes to an Asperger child you are pretty much at a loss. Some people often say, well have you done this or try this. I know they think they are trying to help, but unless you have an Asperger child, you have no idea what parents go through every single day. School is a another story...most teachers don't know what to do with an Aspergers child, some have never heard of Aspergers Syndrome. So we battle with the education portion of trying to teach teachers about Aspergers and how Aspergers children respond and act about different things and also dealing with other students that have no idea what's going on. We have three very special boys, one is just extra special. Just a day in the Musgrave life...just keep praying.
•    Anonymous said... So important
•    Anonymous said... Will has ADHD and is doing so much better now. Much more comfortable in himself. That is a big adjustment too.

Post your comment below…
By

What Your High-Functioning Autistic Child Is Likely To Face As An Adult

Moms and dads with children on the spectrum understandably want to know how their kids will cope in the future. However, Autism Spectrum Disorders (ASD) occur across a wide range of strengths and weaknesses, so making an accurate prognosis is difficult, particularly at a young age.

Even though the range of outcomes for kids on the spectrum is so broad, the possibility of relatively normal functioning in adolescence and adulthood offers hope to many moms and dads of kids with ASD. The possibility of permanent “recovery” from ASD (in the sense of eventual attainment of social and cognitive skills) has been raised in association with a number of educational and treatment programs.

Studies have revealed that there are some kids who have symptoms of ASD in early preschool years who do not have these symptoms in any obvious form in later years. Whether these improvements reflect (a) developmental pathways of very mildly affected kids, or (b) changes in developmental pathways in response to treatment, is not known.

==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance

The “core deficits” in ASD have generally been found to persist in some degree in most people on the spectrum. Although there is evidence that interventions lead to improvements, and that some ASD kids shift specific diagnoses within the spectrum, there is not a direct relationship between any particular intervention and recovery from ASD. Because there is always room for hope, recovery will often be a goal for many young people with ASD, but in terms of planning services and programs, educational objectives must describe specific behaviors to be acquired or changed.



Research on outcomes can be characterized by whether:
  • goals are short term (i.e., to be achieved in a few weeks or months) or long term (i.e., several years)
  • the goal of an intervention is broadly defined (e.g., best outcome) or more narrowly defined (e.g., increasing peer-related social skills)
  • the study design involves reporting results in terms of individual or group changes

A large body of single-subject research has demonstrated that many ASD kids make substantial progress in response to specific intervention techniques in relatively short time periods (e.g., several months). These gains occur in many specific areas (e.g., social skills, nonverbal communication, reductions of challenging behaviors, etc.). Often the most rapid gains involve increasing the frequency of a behavior already in the youngster’s repertoire, but not used as broadly as possible (e.g., making eye contact). In single-subject reports, changes in some form are almost always documented within weeks after the intervention has begun.

Many treatment studies report post-intervention placement as an outcome measure. Successful participation in regular education classrooms is an important goal for many kids with ASD. However, its usefulness as an outcome measure is limited because placement may be related to many variables other than the characteristics of the youngster (e.g., prevailing trends in inclusion, availability of other services, the parent’s preferences, etc.).

The most commonly reported outcome measure in group treatment studies of kids with ASD have been IQ scores. Studies have reported substantial changes in IQ scores in a surprisingly large number of kids in intervention studies and in longitudinal studies in which kids received nonspecific interventions. However, even in the treatment studies that have shown the largest gains, the youngsters’ outcomes have been variable, with some making great progress and others showing small gains. Overall, while much evidence suggests that education and treatment can help ASD kids attain short-term goals in targeted areas, gaps remain in addressing larger questions of the relationship between particular techniques and both general and specific changes.

==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance

In recent years, there has been a marked increase in the percentage of ASD kids who can attend school in a typical classroom and go on to live independently in community settings. While it is more likely that a higher-functioning youngster will progress faster and further than a lower-functioning one, every son or daughter with ASD grows and progresses. Many ASD kids far exceed doctors' expectations, and a significant percentage of these children actually lose their official ASD diagnosis. Some improve slowly and to a limited degree, while others improve quickly at first and then seem to hit a plateau, or develop issues (e.g., a mood disorder) which inhibit ongoing improvement. Also, there is no "window of opportunity" for growth and development. Kids with ASD don't suddenly stop progressing at a particular age. In fact, even grown-ups on the spectrum can benefit significantly from behavioral therapy, speech therapy and occupational therapy.

Kids with High-Functioning Autism may see a lessening of symptoms as they mature, and up to 20% may no longer meet the diagnostic criteria as grown-ups (although social and communication difficulties may persist). People with High-Functioning Autism appear to have normal life expectancy, but have an increased prevalence of comorbid conditions (e.g., major depressive disorder, anxiety disorder) that may significantly affect prognosis. Although social impairment is life-long, the outcome is generally more positive than with people on the lower end of the spectrum.

Although most children with High-Functioning Autism have average mathematical ability and test slightly worse in mathematics than in general intelligence, some are gifted in mathematics. Although many attend regular education classes, some may utilize special education services because of their social and behavioral difficulties.

Teens with High-Functioning Autism may exhibit ongoing difficulty with self-care or organization, and disturbances in social and romantic relationships. Despite high cognitive potential, some young people with High-Functioning Autism remain at home, although most do marry and work independently.

The "being different" that these teens experience can be troubling. Anxiety may stem from preoccupation over possible violations of routines and rituals (e.g., being placed in a situation without a clear schedule or expectations, concern with failing in social encounters, etc.), and the resulting stress may manifest as inattention, withdrawal, obsessions, hyperactivity, and aggressive or oppositional behavior. Depression is often the result of chronic frustration from repeated failure to engage others socially. Research suggests the rate of suicide may be higher among those with High-Functioning Autism.

All kids on the spectrum have different strengths and weaknesses compared to “typically developing” kids. For example, even if your son or daughter never learns to write in cursive, he may have impressive technical skills. In any event, age at intervention has a direct impact on outcome. The earlier a youngster is treated, the better the prognosis will be.

So what can parents expect to happen when their child with High-Functioning Autism (Asperger’s Syndrome) becomes an adult?

1. Grown-ups with High-Functioning Autism are a minority among the ASD community, making up just a small percentage of those diagnosed with ASD. Since their numbers are so small in relation to the ASD community as a whole, the resources and information relevant to grown-ups with High-Functioning Autism can be much less prevalent than those geared towards kids, teens and adults with more severe forms of ASD. In addition, some grown-ups with High-Functioning Autism feel their struggles discounted by many in the ASD community as being insignificant compared to the hardships faced by those more profoundly challenged. These factors and others combine to make many with High-Functioning Autism feel isolated from the ASD community, their concerns and struggles marginalized by the majority.

2. ASD awareness has risen dramatically over recent years, resulting in more information and resources available to address the needs of the ASD community. Kids with High-Functioning Autism certainly benefit from these resources, with access to necessary intervention services from infancy and throughout the schooling years. On the other hand, grown-ups with High-Functioning Autism can fall between the cracks of today's safety net of ASD resources and services, their symptoms seen as too mild to qualify them for the support received by more severely affected individuals.

==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance

3. Even the most mildly affected among people with ASD face challenges in managing their condition. For example, those with High-Functioning Autism are statistically more prone to depression than the average guy or gal, and low self-esteem and loneliness are common problems. Affordable resources to address these issues can be hard to find, especially in grown-ups for whom these issues have made keeping a job difficult. Added to that is the fact that less severe symptoms can make applications for medical and psychological assistance less likely to be approved.

4. Grown-ups with High-Functioning Autism face the unique challenge of straddling the fence between the ASD community and the community at large, often feeling as if they don't quite fit in with either. The term High-Functioning Autism is used to describe people who meet the criteria for a diagnosis on the spectrum, but show no cognitive delays, and are able to speak, read and write, as well as have IQ scores of average or above. Those with High-Functioning Autism do suffer difficulties in communication, language, and social interaction typical of Autistic Disorder, as well as repetitive behaviors and narrow interests associated with the condition. Abstract language concepts, (e.g., irony and humor) may well be beyond the comprehension of adults with High-Functioning Autism.

5. Many individuals with High-Functioning Autism are able to blend into society as well as anyone, learning to manage their condition to build successful and independent lives. Many find their niche in society quite nicely, with satisfying careers, successful marriages, fulfilling friendships, and active social lives. To the average person, untrained in the subtleties of ASD, these high-functioning individuals may not seem as if they have any autistic traits, sparing them the assumptions and prejudices faced by those with symptoms that are more obvious. Others have more difficulty establishing themselves, finding that their challenges in social awareness and communication create issues that can make independent living difficult. Often, people with High-Functioning Autism are misunderstood by those who lack experience with ASD, and their lack of social awareness and interaction may be construed as rude behavior. Symptoms (e.g., inability to maintain eye contact during conversation) can make job interviews and establishing friendships difficult, as some individuals often misinterpret the behavior as dishonesty or a lack of interest.

6. Many grown-ups with High-Functioning Autism face an uphill battle in establishing lasting personal relationships, facing the same misconceptions in personal friendships as in workplace ones. Actions that result from a lack of understanding of non-verbal cues (e.g., body language, facial expression, etc.) can leave people with the impression that adults with High-Functioning Autism are self-absorbed and selfish.

7. Steady employment can be a challenge to some high-functioning individuals. While workers with High-Functioning Autism are very often extremely bright, focused, and talented employees, the social aspects of the workplace can be their undoing. Workplace camaraderie can be unfamiliar territory for those with social interaction difficulties, the small talk and humor beyond their grasp. Co-workers who are not aware of the difficulties faced by those with High-Functioning Autism may see them as odd due to behavioral symptoms, or too serious, aloof, or arrogant because of the social awkwardness that accompanies the condition. These misunderstandings can breed resentments among co-workers, causing dismissals by employers in order to keep peace in the workplace.

8. While ASD research and management has improved by leaps and bounds over recent years, many of the difficulties faced every day by people with High-Functioning Autism make it clear that much more work lies ahead. Both in the ASD community and in mainstream society, lack of education and misunderstandings abound, leaving many of those affected by High-Functioning Autism feeling stranded, with one foot planted in each world – but truly at home in none.


 Audrey said...
I really find numbers 3, 4, and 5 affect my life...it is tough never really fitting into either camp- not fully autistic and not fully NT...people assume either way and I am finding myself less inclined to actually explain anymore. I find being an adult with AS enriching and also heartbreaking depending on the circumstance. Luckily for me I have supportive husband, kids and best friend but there is still that invisible line. Thanks for writing this. Even though I felt like crying a bit because unfortunately most is true, it was also strangely validating and I felt less alone at the same time:) ( If I commentated before and it went through just erase one...I thought it did not go through...)
By

The Extraordinary Demands Placed on Parents Raising Kids on the Spectrum

"Is it normal (or selfish of me) to feel a sense of sadness and disappointment now that we have learned our son has autism (high functioning)? How do you cope effectively with these demands - and the stress - of raising a special needs child? I need a big dose of strength right now... been a bad day :( "

Moms and dads of kids with Asperger’s Syndrome (AS) and High-Functioning Autism (HFA) play multiple roles. Often, they are the first adults to recognize a developmental problem, and they should pursue their concern until they receive a diagnosis and find services for their youngster.

Once they become involved in a treatment program, moms and dads should be active partners in their youngster’s treatment process to ensure that skills learned in therapy transfer to the home-setting, school, and community at large. As members of the individualized education plan (IEP) team, moms and dads should also be active advocates for the youngster, ensuring that the educational process goes forward smoothly.

These many demands on moms and dads occur in the context of family life, including the needs of siblings, parents as individuals and as a couple, and family needs as a whole. In addition, the parents of AS and HFA  kids may experience sadness, anger, disappointment, or other complex emotions that can accompany the initial discovery that their youngster has a developmental problem and the ongoing need to make sacrifices to serve the needs of their youngster. Most families cope effectively with these demands, but some may encounter significant stress as they raise their AS and HFA youngster.



Specific knowledge, skills, and scientifically-based information about Autism Spectrum Disorders and their treatment are needed. The mastery of specific teaching strategies that enable parents to help their youngster acquire new behaviors and an understanding of the nature of AS and HFA and how it influences their youngster’s learning patterns and behavior is paramount. Moms and dads also need to be familiar with special education law and regulations, available services, and how to negotiate on behalf of their youngster. Furthermore, some parents need help coping with the emotional stress that can follow from having a special needs youngster.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

The fact that parents serve a key role in effective treatment for their youngster is not without costs, and the implications for family life are considerable. Many moms and dads face multiple, demanding roles. Research suggests that while many families cope well with these demands, the education of a youngster with AS and HFA can be a source of considerable stress for some families. In general, moms report more stress than do dads, often describing issues related to time demands and personal sacrifice. Among specific concerns expressed by moms are:
  • the community’s acceptance of their youngster
  • the youngster’s ability to function independently
  • worry about their youngster’s welfare in the years ahead

Moms of kids on the spectrum also report more stress in their lives than do moms of kids with other disabilities (e.g., ADHD).

Dads of kids on the spectrum report more disruption of planning family events and a greater demand on family finances than do dads whose kids are developing typically. These three groups of males do not differ, however, on measures of perceived competence as a father, marital satisfaction, or social support.

In a study of families who had a boy on the spectrum under the age of 6 referred to the TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Kids) program, studies found that, while dads assumed some role in the youngster’s care, moms carried a much greater burden. This difference was not due solely to employment outside of the home. Moms who worked in jobs outside of the home still had greater childcare burdens than their employed spouses. The study also found that meaningful support from one’s spouse was an important predictor of the quality of parenting in the home.

The time spent working with a youngster with AS and HFA is sometimes stressful and demanding, but it also has the potential to reduce family distress and enhance the quality of life for the entire family – including the youngster on the spectrum. Techniques like individualized problem solving, in-home observations and training, and didactic sessions have been employed with families. Moms who learned skills based on the TEACCH model of education for their youngster showed a decrease in depressive symptoms over time in comparison with a group of moms not given this training.

One study found that teaching moms and dads how to use pivotal response training as part of their applied behavioral analysis instruction resulted in happier parent-child interactions, more interest by the moms and dads in the interaction, less stress, and a more positive communication style. The use of effective teaching methods for a youngster with AS and HFA can have a measurable positive impact on family stress. As the youngster’s behavior improves and his skills become more adaptive, families have a wider range of leisure options and more time for one another. To realize these gains, the mother and father must continue to learn specialized skills enabling them to meet their youngster’s needs.

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism
 
Many moms and dads can learn to cope with the demands of parenting a youngster with AS and HFA once they learn about the emotions with which they are dealing with – and how to address them. Not all moms and dads experience these feelings. However, it is helpful for them to be aware of the various emotions involved – and to realize that their experiences and feelings are normal.

Sorrow:
  • Hopes and plans for youngster's future
  • Lifestyle prior to youngster's birth or diagnosis
  • Loss of the "perfect youngster" that was anticipated prior to the birth or diagnosis

Resentment:
  • Toward the educational system
  • Medical system
  • Religious belief system
  • Themselves, spouse, youngster
  • Treatment team

Remorse:
  • Youngster's suffering
  • Less attention toward other kids
  • Less focus on self
  • Relationship with spouse
  • Unable to protect youngster

Feelings of Loneliness:
  • No one else understands what they are going through
  • Avoid having to explain youngster's conditions and answer questions
  • Can sense that others are uncomfortable around youngster
  • Depressed
  • Difficulty meeting youngster's needs outside of home
  • Financially unable to do activities
  • Lack of accommodations
  • Not wanting to interact with others
  • Resentment toward others with "typical kids"
  • Unable to leave home

Low Sense of Self-Worth:
  • Right parenting decisions under normal circumstances may not work for youngster due to AS/HFA
  • Interactions with many therapists who assign various labels and diagnoses of youngster

Worries:
  • Youngster's future
  • Educational needs
  • Ability to live independently when older
  • Safety
  • Stable relationship with spouse
  • Own mental health
  • Next crisis

Anxiety:
  • Advocating for accommodations
  • Attempting to meet needs of other family members
  • Balancing career and family
  • Dealing with insurance coverage and financial concerns
  • Dealing with other's reactions and opinions
  • Decrease in support system
  • Lack of accommodations for youngster
  • Lack of exercise
  • Lack of prior medical or advocacy experiences
  • Learning details of youngster's disorder and about related treatment
  • Making choices regarding youngster's treatment
  • Managing appointments for various professionals
  • Managing time
  • Poor eating habits
  • Sleep deprivation
  • Some parents may become forgetful, miss appointments, and experience other symptoms of stress
  • The youngster's Individualized Education Plan (IEP)

Feeling Isolated:
  • Detachment in other areas of life due to focus on youngster's needs
  • Feelings of despair and hopelessness
  • Over-involvement in work or other activities

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

How can moms and dads care for themselves and move forward?

Find a support system:
  • Locate a counselor to address feelings
  • Locate a support group
  • Meet and interact with other families of kids with AS/HFA
  • Re-establish relationship with spouse
  • Seek discussion boards on the internet
  • Surround self with nurturing individuals that are accepting of youngster and parenting choices
  • Utilize a treatment team that is supportive and empowers moms and dads to make choices that are right for their family

Find Balance:
  • Alone time with spouse
  • Exercise
  • Find enjoyable social activities
  • Fun activities as a family
  • Meditate
  • Use a baby sitter
  • Work outside of home

Read:
  • Enjoyable books/magazines
  • Books by other moms and dads of kids with AS/HFA

Recognize Positive Features of Youngster and Life:
  • Involvement in other kid's lives
  • Realize own wisdom and strength
  • Recognize that the youngster is a fighter
  • See gains the youngster has made

Love the Youngster for the Person He Is:
  • Acknowledge youngster as an individual who may have different life goals
  • Identify what youngster has instead of what she does not have
  • Learn to accept youngster for who she is

Other Ideas:
  • When feelings of crisis have passed, attempt to focus on things that can be controlled instead of those that can't be controlled
  • Use religious/spiritual resources and beliefs
  • Remember that taking care of yourself is important to you and your youngster
  • Remember that it is the journey that counts – not the destination
  • Recognize that different treatment options work for different kids and different families
  • Practice assertiveness skills with treatment team, family, friends, and people in the community
  • Gain understanding that life is about change
  • Attempt to focus on the present instead of the future



More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

 ==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book
==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism
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Assessing Asperger’s and High-Functioning Autism: Tips for Clinicians

Developmentally-based assessments of cognitive, communicative, and other skills provide information important for both diagnosis and program planning for kids with Asperger’s Syndrome (AS) and High-Functioning Autism (HFA). Careful documentation of a youngster’s unique strengths and weaknesses can have a major impact on the design of effective intervention programs and is particularly critical due to the fact that unusual developmental profiles are common.

Given the multiple areas of difficulty, the efforts of experts from various disciplines are often needed (e.g., audiology, neurology, pediatrics, physical and occupational therapy, psychiatry, psychology, speech and language pathology). The level of expertise required for effective diagnosis and assessment may require the services of professionals other than those usually available in a school setting.

In some cases, psychological and communication assessments can be performed by existing school staff, depending on their training and competence in working with kids with AS and HFA. However, other services (e.g., management of seizures, drug therapy, genetic testing, etc.) are managed in the health care sector. Some kids may fall between systems, and therefore not be served well.



Several principles underlie assessment of a youngster with AS or HFA:

1. A developmental perspective is important. Given the strong association of mental retardation with Autism Spectrum Disorders, it is important to view results within the context of overall developmental level.

2. Behavioral difficulties must be considered, since they affect both the youngster’s daily functioning and considerations for intervention.

3. Functional adjustment should be assessed. Results of specific assessments obtained in more highly structured situations must be viewed in the broader context of a youngster’s daily functioning and response to real-life demands. The youngster’s ability to translate skills into real world settings is particularly critical.

4. Multiple areas of functioning should be assessed, including current intellectual and communicative skills, behavioral presentation, and functional adjustment.

5. Social dysfunction is probably the most defining feature of AS and HFA, so it is important that the effect of a youngster’s social challenges on behavior be considered.

6. Variability of behavior across settings is typical. Behavior of a youngster will vary depending on such aspects of the setting as novelty, degree of structure provided, and complexity of the environment. Thus, observation of facilitating and detrimental environments is useful.

7. Variability of skills is typical, thus it is important to identify a youngster’s specific profile of strengths and weaknesses rather than simply present an overall global score. Similarly, it is important not to generalize from an isolated skill to an overall impression of general level of ability, because such skills may grossly misrepresent the youngster’s typical abilities.

Various diagnostic instruments can be used to help structure and quantify clinical observations. Information can be obtained through observation (e.g., Autism Diagnostic Observation Scale) as well as the use of various diagnostic interviews and checklists (e.g., Autism Diagnostic Interview-Revised; Childhood Autism Rating Scale; Autism Behavior Checklist; Aberrant Behavior Checklist). An adequate assessment will involve both direct observation and interviews of mothers, fathers and educators.

The range of symptoms in AS is quite broad and spans the entire range of IQ. A diagnosis can be made in a low-functioning youngster as well as in a youngster who is intellectually gifted. In addition, children with AS vary along a number of other dimensions (e.g., levels of communicative ability, degree of behavioral difficulties, etc.). As a result, in working with the youngster, considerable expertise is required. Clinicians must consider the quality of the information obtained (both in terms of reliability and validity), the involvement of mothers/fathers and educators, the need for interdisciplinary collaboration, and the implications of results for intervention. Coordination of services and facilitating discussion between members of assessment/treatment teams and mothers/fathers is critical.

A range of components must be part of a comprehensive educational evaluation of kids with AS and HFA. These include:
  • communicative assessment
  • consultation regarding aspects of motor, neuropsychological, or other areas of functioning
  • medical evaluation
  • obtaining a thorough developmental and health history
  • psychological assessment

This information is important both to diagnosis and differential diagnosis and to the development of the IEP.

The psychological assessment should establish the overall level of cognitive functioning as well as delineate a youngster’s profiles of strengths and weaknesses. This profile should include consideration of a youngster’s ability to remember, solve problems, and develop concepts. Other areas of focus in the psychological assessment include:
  • social cognition
  • play
  • motor and visual-motor skills
  • adaptive functioning

Kids with AS and HFA will usually need to be observed on several occasions during more and less structured periods.

The choice of assessment instruments is a complex one and depends on the youngster’s:
  • ability to cope with transitions in test activities
  • ability to respond to complex instructions 
  • ability to respond to social expectations
  • ability to work rapidly
  • level of verbal abilities

Kids with AS and HFA often do best when assessed with tests that require less social engagement and less verbal mediation. In addition to the formal quantitative information provided, a comprehensive psychological assessment will also provide a considerable amount of important qualitative information. It is important that the clinician be aware of the uses and limitations of standardized assessment procedures and the difficulties that these kids often have in complying with verbal instructions and social reinforcement. Operant techniques may be helpful in facilitating assessment.

Difficulties in communication are a central feature of AS and HFA, and they interact in complex ways with social deficits and restricted patterns of behavior and interests in a given child. Accurate assessment and understanding of levels of communicative functioning is important for effective program planning and intervention. Communication skills should be viewed in a broad context of the child’s development. Standardized tests constitute only one part of the assessment of communication abilities in young people with AS and HFA. The selection of appropriate assessment instruments, combined with a general understanding of these disorders, can provide important information for purposes of both diagnostic assessment and intervention.

In addition to assessing expressive language, it is critical to obtain an accurate assessment of language comprehension. The presence of oral-motor speech difficulties should be noted. In kids with AS and HFA, the range of communicative intents may be restricted in multiple respects. Delayed and immediate echolalia are both common and may have important functions. In addition, various studies have documented unusual aspects even of very early communication development in AS and HFA.

In assessing language and communication skills, parent interviews and checklists may be used, and specific assessment instruments for kids with AS and HFA have been developed. For kids under age 3, scores on standardized tests may be particularly affected by difficulties in assessment and by the need to rely on parent reports and checklists. For preverbal kids, the speech-communication assessment should include observation of a youngster’s level of awareness of communication from others, the youngster’s sense of intentionality, the means used for attempting communication, and the quality and function of such means, sociability, and play behaviors. The clinician should be particularly alert to the youngster’s capacity for symbolic behavior since this has important implications for an intervention program.

There are also several standardized instruments that provide useful information on the communication and language development of pre-verbal kids with AS and HFA. These include:
  • Mullen Scales of Early Learning
  • MacArthur Communicative Development Inventor
  • Communication and Symbolic Behavior Scales

For kids with some verbal ability, social and play behaviors are still important in terms of clinical observation but various standardized instruments are available as well, particularly when the youngster exhibits multi-word utterances. Areas to be assessed include:
  • articulation
  • expressive language and comprehension
  • morphology
  • pragmatics
  • prosody
  • receptive and expressive vocabulary
  • semantic relations
  • syntax

The choice of specific instruments for language-communication assessment will depend on the developmental levels and chronological age of the youngster. Additional observations may address aspects of topic management and conversational ability, ability to deal with non-literal language, and language flexibility. The clinician must be flexible and knowledgeable about the particular concerns related to assessment of kids with AS and HFA.

Motor abilities may represent an area of relative strength for a youngster, but as time goes on, the development of motor skills in both the gross and fine motor areas may be compromised, and motor problems are frequently seen in young kids with AS and HFA. Evaluations by occupational and physical therapists are often needed to document areas of need and in the development of an intervention program. Standardized tests of fine and gross motor development and a qualitative assessment of other aspects of sensory and motor development, performed by an expert in motor development, may be helpful in educational planning.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

 ==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

 ==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

 ==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book
==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism
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