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Parents with Asperger's and High-Functioning Autism -- Part 2


In part 2 of this series, we will look at poor cognitive shifting in parents on the autism spectrum:

Research in the area of cognition reports that adults with Asperger's (AS) and High-Functioning Autism (HFA) have problems with updating the scope and focus of their attention. This attentional deficit may be due to an inability to reorient attention rapidly, which can be problematic when the mother or father has care and control of younger kids.  Moms and dads need to be able to reorient their attention frequently, and often need to be able to do so under pressure. 



Research also suggests that many people on the autism spectrum have a deficit in the shifting of attention (e.g., paying attention to what someone is saying while being distracted by sensory stimuli). This trait affects parenting as well. These deficits blend with other neurological differences of AS and HFA (e.g., sensory hypersensitivity and hyposensitivity), and together they affect the core tasks of parenting (e.g., the appearance of a sudden strong smell may prevent the parent from noticing what her youngster is doing). 

Related to attention problems are the deficits in the use of visual attention, problems in attending to both auditory and visual information, and problems in attending to many visual stimulus  simultaneously. For example, an autistic parent with three or more kids may struggle with information and sensory input at playgrounds and parks.  In this case, the parent may claim that she is over-stimulated and overwhelmed neurologically, or she may blame others around her for her misery. In this way, the parent is a lot like an autistic child who becomes frequently overwhelmed due to sensory sensitivities. 

In addition to sensory issues, moms and dads on the spectrum often state that they find it difficult to tolerate the normal mess, noise and chaos of their playful, inquisitive children  for any length of time. These parents cope with what are basically neurological insults in a variety of ways (e.g., shutting down, melting down, withdrawing from the unwanted stimuli, etc.). As a result, this may leave the kids to fend for themselves.

The Aspergers Handbook
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How to Manage Fearfulness in Kids on the Autism Spectrum

Question from a concerned mother of an autistic child: 

"My 9 y.o. son is under a ton of stress right now [I think mostly because of the coronavirus scare]... but there are numerous other things he tends to worry about too. How can we as his parents reduce his excessive and unrealistic fears?!"

CLICK HERE for the answer...


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School-Work Problems in Children on the Autism Spectrum

“My 10-year-old son, TJ, is in the 5th grade and has high functioning autism. Every night we get into arguments over schoolwork that causes him to have huge temper tantrum. Two afternoons a week, he has other activities, and by the time we get home, doing his assignments is the last thing he feels like doing. The other three days, we argue about whether he should do his homework right after school or if he should have some time to relax and play first. When TJ finally sits down to study, he wants me there helping all the time. I do want to help him, but I know at some point he is going to need to be able to do it on his own, and I have other things I need to be doing. Also, most of the time he doesn’t even remember what assignments he’s supposed to be working on. I’m really confused about this issue and what my role is. Got any ideas?”

A major cause of anguish for children with High-Functioning Autism (HFA) – and their parents – is the substandard completion of school work. These young people often have a negative reaction to the mere thought of completing assigned tasks. There are two explanations for this: (1) their degree of anxiety and mental fatigue during the school day, and (2) their cognitive profile.

1. Anxiety and Mental Fatigue—

Parents and teachers need to recognize the degree of anxiety experienced by HFA kids as the signs can become evident in their behavior and mood. The indicators of anxiety may not be noticeable at school, but the youngster may behave very differently at home. He may be quiet and obedient in the classroom, but may become intolerant and hostile immediately after he returns home.

School refusal or walking out of school can be a sign of unbearable anxiety. Other kids on the autism spectrum may express the signs of stress at school through episodes of extreme anger and explosive behavior (e.g., meltdowns). Others may simply “shut down” and become somewhat depressed.
 
==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

Kids with HFA and AS who are having problems learning the “social curriculum” and coping with the anxiety of school usually want a clear division between home and school. Their general view is "school is for work, and home is for fun." Thus, the prospect of interrupting their fun and relaxation at home with school work is unacceptable to them – and is a source of ongoing conflict.



2. Cognitive Profile—

Kids with HFA have an uncommon profile of cognitive skills that must be recognized and accommodated when it comes to school work. One feature of the profile is impaired executive function. The profile is similar to that of kids with ADD, for example:
  • a need for supervision, guidance, and determining what is relevant and redundant
  • an unusual profile on standardized tests of intelligence, especially with regard to verbal and visual intelligence
  • difficulty generating new ideas
  • difficulty planning, organizing and prioritizing
  • poor time perception and time management
  • poor working memory
  • tendency to be impulsive and inflexible when problem solving

Some kids on the spectrum are “verbally-oriented” and have a relative strength in reading, vocabulary and verbal concepts, while others are “visually-oriented” (a picture is worth a thousand words).

Tips for Parents and Teachers—

The following strategies are designed to minimize the impaired executive function, accommodate the profile of cognitive skills, and help HFA kids complete their school work assignments with less anxiety, both at home and school:

1. When it comes to school work, the HFA youngster may have difficulty getting started or knowing what to do first. Procrastination can be an issue, and the child’s mother or father may have to supervise the start of the school work.

2. Once the youngster has started his work, this is not the end of the supervision. The parent will also need to be available if the youngster requires assistance when he is confused and to ensure that he has chosen the appropriate learning strategy.

3. There can be a tendency for kids on the autism spectrum to have a closed mind to alternative strategies. A technique to show that there is more than one line of thought is to provide the youngster with a list of alternative strategies to solve the particular problem. The youngster may need to know there is a plan ‘B’.
 
==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder

4. If the assignment takes several days to complete, it is important that the educator regularly reviews the youngster’s rough drafts and progress, which also increases the likelihood that it will be completed on time.

5. The area where the youngster performs her school work must be conducive to concentration and learning. It’s helpful to have appropriate seating, lighting and removal of any distractions. The distractions can be visual (e.g., the presence of toys or television), which are a constant reminder of what the youngster would rather be doing, or auditory distraction (e.g., the noise from electrical appliances or the chatter of siblings). Ensure that the desk only has equipment relevant to the task. The child’s working environment must also be safe from curious brothers and sisters.

6. Teaching a youngster with HFA requires special skills and the mother or father is not expected to have those skills. As a parent, you are also more emotionally involved than a teacher, and it can be difficult for you to be objective and emotionally detached. One option is to hire a tutor to provide the skilled guidance and supervision.

7. Special consideration should be given to the youngster’s cognitive strengths and weaknesses. If the youngster’s relative strength is in visual reasoning, then flow diagrams, mind maps, and demonstrations will enhance his understanding. If the child’s strength is in verbal skills, then written instructions and discussion using metaphors (especially metaphors associated with his special interest) will be helpful.

8. The use of a computer is helpful, especially for those kids who have problems with handwriting. Sometimes the mother or father can act as a secretary, typing the material for the youngster and proof reading his answers. School work can be a collaborative rather than solitary activity. Note: parents are not being over-protective here, they just know that without their involvement, the work would not be done.

9. Consider allowing the HFA youngster to complete her school work at school. It can be undertaken at lunchtime and before or after classes in their home class or the school library. However, the child will still require supervision and guidance from a teacher or assistant. In high school, some autistic teens have been able to graduate taking fewer subjects and the extra time available in the school day dedicated to school work.

10. One characteristic of kids on the spectrum is the difficulty explaining their reasoning using speech. For example, the youngster may provide the correct solution to a math problem, but not be able to use words to explain how she achieved the answer. Her cognitive strategies may be unconventional and intuitive rather than deductive. The parent or teacher may need to accept the child’s correct solution, even if the logic is somewhat unclear.

11. Kids with HFA and AS often enjoy having access to a computer and may be more able to understand the subject matter if it is presented on a computer screen. Material presented by a real person adds a social and linguistic dimension to the situation, which can increase the youngster’s confusion and anxiety. Educators should consider adapting the school work so that a considerable proportion of the work is conducted using a computer. Word processing facilities – especially graphics, grammar and spell check programs – are invaluable in improving the legibility and quality of the finished product.

12. Kids on the spectrum are notorious for their difficulty coping with frustration, criticism, and their emotions. They can become quite agitated when confused or when making a mistake. The parent or teacher will need to be available to model calmness and to help the youngster remain composed and logical.

13. A small digital recorder used for dictation can provide a record of the educator’s spoken instructions regarding what assignments are to be completed, and the youngster can add her own comments or personal memo to the recording to remind her of key information. 

==> Teaching Social-Skills and Emotion-Management to Children with Autism Spectrum Disorder

14. If regular breaks are necessary to promote concentration, the work can be divided into segments to indicate how much work the youngster has to complete before he can take a momentary break. The usual mistake made by parents and teachers is to expect too much prolonged concentration.

15. A timer can be used to remind the youngster how much time is remaining to complete each section of school work. It is also important to ensure that time scheduled for the work does not coincide with the youngster’s favorite television program, for example. If it does, she may be able to record the show and watch it later.

16. A school work diary or planner can help the youngster remember which books to take home and the specific school work for each evening. Also, a diary (perhaps with stickers and other decorations) may make homework less unappealing to the youngster.

17. A daily school work timetable can be made by the mother or father with guidance from the educator to define the expected duration and content of each assignment. This can be extremely helpful if there are problems with the youngster’s allocation of time to each school work component. Sometimes the work can take hours when the teacher intended only several minutes on a specified task.

18. Lastly, if all these techniques are unsuccessful, consider allowing the HFA youngster to be exempted from doing school work. If the strategies outlined above are unsuccessful or unable to be implemented, then forget about school work. Sometimes this advice is a great relief to the youngster, his mother and father – and the educator!

In conclusion, here are some simple bullet points regarding schoolwork-related problems that parents and teachers will need to remember:
  • Be available for help (this doesn’t mean you must be there beside your child every moment).
  • Be consistent about what time of day the work will be done.
  • Be patient when your child makes the same mistakes over and over again. Maybe he needs to be taught using a different approach.
  • Be realistic in your expectations on how much time it will take. Remember, this is all new for a younger child, and she is just beginning to build her logic and knowledge base.
  • Don’t do problems or assignments FOR your child.
  • Have everything the youngster will need ready before he starts.
  • If the youngster has lots of work, ask her what she would like to start with. This small gesture helps the youngster gain some control over an activity she doesn't like.
  • If your child can’t do his homework at school, he might need to unwind and relax when he first comes home, instead of launching straight into work. 
  • If your child finds it difficult to do homework at home, check to see if he can do it at school instead.
  • If your child has more than one piece of homework, it may be useful to ask the teacher to either make sure your child has written down the homework in his diary – or write it in for him. 
  • Keep the homework-routine predictable and simple. 
  • Keep the work time as quiet as you can.
  • Remember that disorganization is a problem for most kids on the spectrum. Thus, the best assistance you can provide would be in the area of teaching organization skills.
  • Set a timer for 15 minutes, and when it dings, tell your youngster to take a quick break to stretch or get a drink of water.
  • Use a reward system (e.g., the completion of all assignments is rewarded with an extra 15 minutes of computer-game time later that evening).

 
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Parents with Asperger's and High-Functioning Autism: Part 1

Many parents with Asperger's (AS) and High-Functioning Autism (HFA) experience significant difficulties in parenting -- especially if one their children is also on the autism spectrum. Even though the challenges experienced by moms and dads on the spectrum are significant, these challenges are not well understood in the child welfare community. This is in part due to the fact that the AS or HFA parent is able to parent adequately on many fronts, yet he or she is invisibly "disabled" (i.e., the disorder is not readily apparent to the observer). 

Many AS and HFA parents are relatively high functioning in the workplace, but struggle raising their children due to social skills deficits. As any mother or father can tell you, parenting involves a great deal of social expertise, conflict-resolution skills, empathy, listening skills, stress-management, and effective disciplinary techniques -- just to name a few.



Proper parenting is a monumental task that involves (a) providing emotional, relational and financial support, (b) guidance, (c) nurturing, (d) teaching, (e) short and long-term planning. It is a challenge even for parents who have not been diagnosed with a disorder.

Problems in parenting are the result of some of the traits associated with AS and HFA (e.g., weak central coherence, poor cognitive shifting, lack of a theory of mind, etc.) -- not the result of poor parenting skills. While these parents do suffer from significant neurological deficits that can be mistaken as poor parenting, these deficits have more to do with how their brain is wired. They must not be viewed as "bad" parents, rather parents who struggle with a disorder that can affect their parenting abilities.

Most moms and dads with AS and HFA work very hard to understand their kids -- and are eager to parent in their kid’s best interests. But, due to the challenges associated with the disorder, they often fall short. This, in turn, can create a lot of guilt and frustration in the parent who may be viewing herself or himself as a "failure." 

Unfortunately, when these parents begin to experience significant parent-child conflict, they rarely seek outside assistance in the form of parent education. Instead, they may continue parenting in a rather immature and haphazard manner, which often results in their children parenting themselves and/or growing up too  quickly (i.e., they become little adults who appear much older than they are). 

Autistic parents who continue making the same parenting mistakes over and over do so because they lack insight into their disorder and how it impacts their role as a parent. To make matters even more difficult, many moms and dads on the spectrum have a youngster with similar profiles to their own and who are a huge challenge to them. 


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Rett Syndrome and Asperger's in Girls

“What causes Rett syndrome, and is it a fairly common disorder that occurs alongside Asperger syndrome? Also, what are the treatment options?"

Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal development (usually between 6 and 18 months), autism-like symptoms begin to appear. The little girl's mental and social development regresses. For example, she no longer responds to her mom or dad and pulls away from any social contact. If she has been talking, she stops. She can’t control her feet, and she wrings her hands. Some of the problems associated with Rett syndrome can be treated. Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.

Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these kids much sooner, and improving the quality of life these kids experience.



Symptoms of Rett syndrome include:
  • child may have long fits of laughter
  • child may become tense and irritable as she gets older
  • child may cry or scream for long periods of time
  • no language skills
  • problems with hand movements
  • problems with muscles and coordination
  • slowed growth
  • symptoms usually don’t improve over time
  • trouble with breathing

The best options available to treat Rett syndrome include:
  • Behavioral therapy
  • Good nutrition
  • Occupational therapy
  • Physical therapy 
  • Speech therapy
  • Standard medical care and medication
  • Supportive services

Also, medication can treat some of the problems with movement and help control seizures.

Rett syndrome is a progressive, neurodevelopmental Autism Spectrum Disorder. Asperger's is also an Autism Spectrum Disorder related to development. While Rett syndrome symptoms usually center around the inability to perform motor functions, Asperger's symptoms have more to do with social skills deficits, as well as language and communication impairment. 

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