Young people with Asperger’s (AS) and High-Functioning Autism (HFA):
are often physically clumsy and awkward
are often unsuccessful in games involving motor skills
experience fine-motor deficits that can cause penmanship problems, slow clerical speed and affect their ability to draw
have stiff, awkward gaits
Programming Suggestions for Teachers:
1. Some kids with AS and HFA benefit from guidelines drawn on paper that help them control the size and uniformity of the letters they write. This also forces them to take the time to write carefully.
2. When assigning timed units of work, make sure the youngster's slower writing speed is taken into account.
3. Refer the “special needs” youngster for adaptive physical education program if gross motor problems are severe.
4. Young people with AS and HFA may require a highly individualized cursive program that entails tracing and copying on paper, coupled with motor patterning on the blackboard. The teacher can guide the youngster's hand repeatedly through the formation of letters and letter connections, and can also use a verbal script. Once the youngster commits the script to memory, he can talk himself through letter formations independently.
5. Involve the youngster in a health/fitness curriculum in physical education, rather than in a competitive sports program.
6. Children on the autism spectrum may need more time than their peers to complete exams. Taking exams in the resource room not only offers more time, but would also provide the added structure and teacher redirection these kids need to focus on the task at hand.
7. Do not push the AS or HFA youngster to participate in competitive sports, because her poor motor coordination may only invite frustration and the teasing of team members. She lacks the social understanding of coordinating one's own actions with those of others on a team.
"What should we do exactly if we decide to go ahead and get our child diagnosed? We have our suspicions and we think it's probably time to investigate the possibility that he is on the spectrum."
Some parents know that there is something “not quite right” with their child – and they may suspect some form of autism – but they delay in seeking a formal diagnosis for fear that their child will be “labeled” (e.g., “If my child gets labeled as having a ‘disorder,’ people will discriminate against him and treat him unfairly”).
In addition, schools downplay the diagnosis to give less services and save money. And worse yet, some physicians are afraid to give the diagnosis of High-Functioning Autism (Asperger’s) out of fear of frightening moms and dads, hurting their feelings, or stigmatizing their youngster.
Why do some parents resist getting a diagnosis? Here are some possible reasons:
I don’t want my child to get lumped into a category.
I need him to be “normal.”
We don’t want to believe it.
I don’t want to be perceived as a ‘bad’ parent.
He’s not that bad. He’s just having a bad week/month/year.
I didn’t plan this into my life.
I don’t have time for this.
It can’t be true. It just can’t be.
It’s just a phase, and he’ll grow out of it.
Our doctor advised us to “wait to see.”
The unknown is terrifying.
We don’t have Autism in our family.
The stigma needs to go. High-Functioning Autism is not a horrific, hopeless diagnosis. And the longer you wait to seek and accept the diagnosis, the more precious time your youngster loses. Early Intervention is KEY!
If a child has High-Functioning Autism and doesn’t know, it affects her anyway. If she does know, she can learn to minimize the negative impact and leverage the positive. Without the knowledge that she has High-Functioning Autism, she will likely fill that void with other, more damaging explanations as to why she thinks, feels and behaves the way she does.
What are the benefits of getting the proper diagnosis?
If you don’t get the “High-Functioning Autism” label for your youngster, then you are leaving it to everyone in the community to give your youngster the label of their choice.
The sooner you get a proper diagnosis, the less valuable time you lose – time that you can never get back to help your youngster.
You can’t treat it properly until you know what it is.
You may be eligible for appropriate services.
Some view the diagnosis of High-Functioning Autism as an untreatable, hopeless, confusing disease caused by bad parenting or defective genes. We now know that isn’t true at all. This disorder is treatable! Recovery is happening – every day. So, do not despair. There is information, support, hope, treatment and recovery. There are children healing – lots of them.
So, what should you do if you decide to seek a diagnosis for your child?
1. The first thing moms and dads should do is identify, either in the school or the community, a professional who has expertise in autism spectrum disorders. Some schools have a psychologist on staff who can evaluate children for High-Functioning Autism. Other options include a child and adolescent psychiatrist, a doctor who specializes in developmental disorders, or a psychologist in your local mental health facility. Some of these professionals are properly trained to make this diagnosis – but not always. If you go this route, ask the professional about his or her background and comfort level in diagnosing autism.
2. Be ready to discuss the following things with your doctor:
The youngster's medical history
His or her grades and behavior reports from school
The family's history of medical, mood, and emotional issues
Steps you have taken to deal with your youngster's emotional and behavioral problems
How he or she behaves at home
Because autism spectrum disorders vary widely in severity, making a diagnosis may be difficult. There isn't a specific medical test to determine the disorder. Instead, a specialist may:
Give your youngster tests covering speech, language, developmental level, and social and behavioral issues
Include other specialists in determining a diagnosis
Observe your youngster and ask how her social interactions, communication skills and behavior have developed and changed over time
Present structured social and communication interactions to your youngster and score the performance
3. Include the teacher’s input. Often times, “red flags” are not seen until the child enters the public school system where he is forced into a chaotic, highly social environment. Symptoms tend to come out when the High-Functioning Autistic child is doing something he finds difficult or uninteresting. When the teacher voices her concerns regarding the child’s lack of focus, the parent might say, 'I'm not quite sure what you’re talking about. Michael can play video games for several hours and has no trouble focusing.” However, life isn't a video game – it's full of things that are difficult and challenging. So, you may need to ask your youngster's teacher to fill out rating scales to present to your youngster's health care provider.
4. Identify the skills that your youngster does and doesn’t have. It is not always easy for moms and dads to see all of the specific skills that their youngster needs to learn. Some clinics use the ABLLS-R, which is an assessment for basic language and learning skills that typically-developing kids usually develop before reaching 5 years of age. There are 544 skills from 25 areas ordered from simpler to more complex in the assessment.
The ABLLS-R includes receptive and several types of expressive language, basic academics, group participation, social interaction, self-help and motor skills. Once an assessment is completed, it is easy to identify and prioritize skills that need to be taught to the youngster. Clinicians can then track the development of those skills and teach more complex skills as the less complex skills are acquired.
5. Follow through with treatment goals. The goal of treatment is to maximize your youngster's ability to function by reducing the associated symptoms and supporting development and learning. Treatment options may include:
Medications: No medication can improve the core signs of High-Functioning Autism, but certain medications can help control symptoms (e.g., antidepressants may be prescribed for anxiety, antipsychotic drugs are sometimes used to treat severe behavioral problems, and other medications may be prescribed if your youngster is hyperactive).
Family therapies: Moms and dads can learn how to play and interact with their child in ways that promote social interaction skills, manage problem behaviors, and teach daily living skills and communication.
Educational therapies: Kids on the autism spectrum often respond well to highly-structured educational programs. Effective programs often include a team of specialists and a variety of activities to improve social skills, communication and behavior. Preschool kids who receive intensive, individualized behavioral interventions often show great progress.
Behavior and communication therapies: Many programs address the range of social, language and behavioral difficulties associated with High-Functioning Autism. Programs focus on reducing problem behaviors, teaching coping skills, teaching how to act in social situations, and how to communicate better with others. Though young people on the spectrum don't always outgrow associated symptoms, most learn to function quite well.
It's a good idea to occasionally check on whether your youngster's treatment is still working as she gets older. Medications and strategies for managing her behaviors may need to be changed over time. Some kids are diagnosed with High-Functioning Autism at a later-than-average age. Many of them won’t be fully symptomatic until they reach the demands of middle school. Once they have to keep track of changing classes and a locker, trouble socializing and staying focused may become more obvious.
6. Consider getting your child on an Individual Education Plan (IEP). If you suspect your youngster needs special services at school, contact a doctor for a diagnosis as well as your youngster's school for a special education evaluation.
Yes, there's still a certain amount of stigma that is attached to having a psychiatric diagnosis. So, parents are generally concerned about their youngster being labeled early in life – and whether or not that label will stick to that youngster and follow him the rest of his life. And yes, it’s understandable that in the beginning there may be denial, and there may even be a grieving process that moms and dads go through when they're getting this news. But, bear in mind that IEPs are often as unique as the youngster. This is one of the places where it's crucial to have a label or a diagnosis, because the child can't access the services he needs unless he has an appropriate diagnosis that will allow the school to accommodate for his educational needs.
In conclusion, your child’s diagnosis directs the course of treatment. Every disorder has its own set of treatment protocols. For example, a child with generalized anxiety disorder is much different from a child who is anxious because he suffers from post-traumatic stress disorder. A professional who doesn't realize that the child’s anxiety is spurred by trauma may spend years treating the anxiety without seeing any progress. Similarly, many disorders can cause symptoms of depression, but this doesn't mean the child with these disorders has depression. Thus, without a proper diagnosis, the child with High-Functioning Autism is literally left to fend for himself.
Ultimately, it is the responsibility of the clinician to accurately diagnose your child. However, by being a good advocate for your child, you can expedite the diagnostic process and ensure the first diagnosis you get is the right one.
Resources for parents of children and teens on the autism spectrum:
Kids with Asperger’s (AS) and High-Functioning Autism (HFA):
are easily distracted by internal stimuli
are often off task
are very disorganized
have difficulty figuring out what is relevant, so attention is focused on irrelevant stimuli
have difficulty learning in a group situation
have difficulty sustaining focus on classroom activities (often it is not that the attention is poor but, rather, that the focus is "odd")
tend to withdraw into complex inner worlds in a manner much more intense than is typical of daydreaming
Programming Suggestions for Teachers:
1. Work out a nonverbal signal with the AS or HFA youngster (e.g., a gentle pat on the shoulder) for times when he is not paying attention.
2. Actively encourage the youngster to leave her inner thoughts and fantasies behind and refocus on the real world. This is a constant battle, as the comfort of that inner world is much more attractive than anything in real life. For these “special needs” kids, even free play needs to be structured, because they can become so immersed in solitary, ritualized fantasy play that they lose touch with reality.
3. Seat the youngster at the front of the class and direct frequent questions to him to help him attend to the lesson.
4. AS and HFA kids with severe concentration problems benefit from timed work sessions. This helps them organize themselves. Classwork that is not completed within the time limit (or that is done carelessly) must be made up during the youngster's own time (i.e., during recess or during the time used for pursuit of special interests).
5. Young people on the autism spectrum can sometimes be stubborn. Therefore, they need firm expectations and a structured program that teaches them that compliance with rules leads to positive reinforcement. Such programs motivate the youngster to be productive, thus enhancing self-esteem and lowering stress levels, because the youngster sees herself as competent.
6. In the case of mainstreamed AS and HFA students, poor concentration, slow clerical speed, and severe disorganization may make it necessary to lessen the homework load, classwork load, and provide time in a resource room where a special education teacher can offer the additional structure the youngster needs to complete classwork and homework. Some kids with AS and HFA are so unable to concentrate that it places undue stress on moms and dads to expect that they spend hours each night trying to get through homework with their youngster.
7. If a buddy system is used, sit the AS or HFA youngster's buddy next to him so the buddy can remind the youngster to return to task or listen to the lesson.
8. Encouraging the youngster with AS and HFA to play a board game with one or two others under close supervision not only structures play, but offers an opportunity to practice social skills.
9. A tremendous amount of regimented external structure must be provided if the youngster with AS and HFA is to be productive in the classroom. Assignments should be broken down into small units, and frequent teacher feedback and redirection should be offered.
"How can I help my child with autism (high functioning) to make better decisions?"
The ability to weigh options and make decisions are skills that all children need to possess. If we look closely to what those skills are and the building blocks that are needed for them, one crucial factor is present: the ability to self-reflect. Self-reflection is a necessary component to focus, decision-making, prioritization and action.
For example: What might be the best career for me? Why should I get into a relationship with this person? What can I do to make myself happy? At the heart of all these questions is the ability to introspect and find the answers.
In conventional Cognitive Behavioral Therapy (CBT) programs, clients are encouraged to self-reflect to improve insight into their thoughts and feelings, promoting a realistic and positive self-image and enhancing the ability to self-talk for greater self-control. However, the concept of self-consciousness is different for children with Asperger’s (AS) and High-Functioning Autism (HFA). There is often a qualitative impairment in the ability to engage in introspection (i.e., self-analysis).
Research evidence, autobiographies, and clinical experience have confirmed that many young people with AS and HFA lack an “inner voice” and think in pictures rather than words. They also have difficulty translating their visual thoughts into words. As one teenager with AS explained in relation to how visualization improves his learning (a picture is worth a thousand words), “I have the picture in my mind, but not the thousand words to describe it.” Some of these “special needs” children have an “inner voice” but have difficulty disengaging mind and mouth, thereby vocalizing their thoughts to the confusion or annoyance of others.
When parents attempt to teach self-reflection skills to their AS or HFA child, certain modifications need to be in place (e.g., a greater use of visual material and resources using drawings, role-play, and metaphor, and less reliance on spoken responses). Many young people on the autism spectrum have a greater ability to develop and explain their thoughts and emotions using other expressive media (e.g., typed communication in the form of e-mail or a diary, music, art, or a pictorial dictionary of feelings).
When talking about themselves, older teens and young adults with AS and HFA do not anchor their self-attributes in social activities and relationships, or use as wide a range of emotions in their descriptions like their “typical” peers do. They are less likely to describe themselves in the context of their relationships and interactions with other people. Thus, the teaching of self-reflection skills may have to be modified to accommodate a concept of self primarily in terms of physical, intellectual, and psychological attributes.
In self-reflection skills training, parents should attempt to adjust their child’s self-image to be an accurate reflection of his abilities and the neurological origins of his disorder. A bit of time needs to be allocated to explaining the nature of AS and HFA and how the characteristics account for his differences. As soon as the youngster has the diagnosis of AS or HFA, the parent needs to carefully and authoritatively explain the nature of the disorder to the family, but the affected youngster also must receive a personal explanation. This is to reduce the likelihood of inappropriate coping strategies to the child’s recognition of being different and concern as to why he has to see psychologists and psychiatrists.
The AS or HFA child also may be concerned as to why she has to take medication and receive “special education” at school. Over the last few years, there have been several publications developed specifically to introduce the youngster or teenager to their diagnosis. The choice of which book to use is the parent’s decision, but it is important that the explanations are accurate and positive. The child will perceive the diagnosis as it is presented.
If the approach is pessimistic, the reaction can be to trigger a depression or to reject the diagnosis and treatment. The parent also can recommend the child read some of the autobiographies written by other kids and teens on the autism spectrum. The subsequent discussion is whether and how to tell other people of the diagnosis, especially extended family, neighbors, and friends.
When an accurate perception of self has been achieved, it is possible to explore cognitive mechanisms to accommodate the AS or HFA child’s unusual profile of abilities and vulnerabilities, and to consider the directions for change in self-image. One approach is using the metaphor of a road map with alternative directions and destinations.
Kids and teens on the autism spectrum need the tools to help them hone their self-reflection skills. Here are some examples of prompts that parents can use to start engaging their youngster in reflecting about his or her thinking (brainstorm some additional ones, too):
During what activities do you become unaware of time passing?
How did you feel?
How do other people see you?
How do you most want to contribute to others?
If you were brave, what would you do?
Tell me something that made you happy today (use the other emotion words like frustrated, sad, angry).
What activities are you good at?
What are you passionate about?
What are you thinking right now?
What are your best gifts?
What are your dreams?
What are your goals?
What could this person be feeling?
What could this person be thinking?
What do you do right?
What do you fear?
What do you hesitate to admit about yourself?
What do you like to play with?
What do you love to do?
What do you most want to create?
What do you most want to give?
What do you value?
What do you want for your life?
What has gone well?
What has not gone well?
What have you always wanted to try?
What have you most enjoyed doing in your life?
What is challenging for you?
What is the next step?
What is your best contribution?
What made you excited today?
What motivates you?
What problem do you want to solve?
What takes energy away from you?
What was the best part of your day?
What was the least that you liked about your day?
When do you feel the most “natural”?
When is it time to take a break?
Where are you dissatisfied in your life?
Where are you meeting resistance right now?
Where do you get energy from?
Why do you like it? (best followed by “what makes you say that?”)
As much as these prompts are for the AS or HFA child, they are for parents, too. Parents should find the time to share their thoughts with their youngster and the entire family during family meetings (use some of the self-reflecting questions above as part of the meeting’s agenda).
Parents need to let everyone know what they are thinking and feeling and make it visible. In this way, the AS or HFA youngster realizes that the self-talk that goes on in her head is normal – and sharing it with her family is important. It also gives family members the opportunity to talk about not just what makes them happy, but more importantly, the deep, dark and ugly thoughts that keep them awake at night and in a state of anxiety. Self-reflection is not just about building self-esteem, it is also being able to share negative thoughts. Thus, parents will do well to give their youngster the chance to reflect on his fears – and face them.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
1. Some kids with AS and HFA benefit from guidelines drawn on paper that help them control the size and uniformity of the letters they write. This also forces them to take the time to write carefully.
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