"Our child was just diagnosed with high functioning autism. We have blamed ourselves for many of his behavioral issues, but now see there was something else going on. So instead of viewing myself as a failed parent, I need to see my role as my son's advocate. What should I be looking for in the way of expected obstacles/challenges to address as they come up?"
You just discovered that your child has High Functioning Autism (HFA). Welcome to Club! You probably didn’t want to be here. But, don’t get discouraged. No one signs up for this membership.
Think of it like this: At least you know what the heck is going on now, which is 10 times better than parenting in the dark. Maybe up until this point, you blamed yourself for many of the emotional and behavioral issues your child experienced. You may have even viewed yourself as a “failure” or a “bad” parent because you couldn’t get your child to stop his negative attitude, tantrums and meltdowns. Well, let’s set the record straight.
The following general descriptions include all the most typical characteristics of HFA (of course, variations occur from child to child):
1. Affective conditions: The social withdrawal and lack of facial expression in HFA may give parents the impression that their child is depressed or lacks the ability to show affection. Distress, tantrums and meltdowns when away from familiar surroundings can give the impression that the child is simply misbehaving. And, excited talking about a grandiose, imaginary world might give the impression that the child is somewhat delusional. However, the full clinical picture and the early developmental history should clarify the diagnosis. The HFA child is simply experiencing the symptoms of his or her disorder rather than being depressed, unaffectionate, defiant or delusional.
2. Experiences at school: The combination of school and communication deficits, and certain special skills gives an impression of marked eccentricity. The HFA child may be mercilessly bullied at school, and as a result, becomes anxious and fearful. Autistic students who are more fortunate in the schools they attend may be accepted as strange “professors” and respected for their unusual abilities. More often than not though, HFA children are labeled as “problem students” because they follow their own interests regardless of the teacher's instructions and the activities of the rest of the class. Many eventually become aware that they are different from their peers, especially as they approach adolescence. As a result, they may become overly-sensitive to criticism. They give the impression of fragile vulnerability and childishness, which some find infinitely touching – and others merely exasperating.
3. Lack of imaginative play: Imaginative pretend play does not occur at all in some children with the disorder, and in those who do have pretend play, it is confined to one or two themes, enacted without variation, over and over again. These may be quite elaborate, but are pursued repetitively and do not involve other kids unless the latter are willing to follow exactly the same pattern. It sometimes happens that the themes seen in this pseudo-pretend play continue as preoccupations in adult life, and form the main focus of an imaginary world.
4. Lack of interest in human company: During the first year of life, there may have been a lack of the normal interest and pleasure in human company that should be present from birth. Babbling may have been limited in quantity and quality. The HFA youngster may not have drawn attention to things going on around her in order to share the interest with others. She may not have brought her toys to show to her parents or friends when she began to walk. In general, there is a lack of the intense urge to communicate in babble, gesture, movement, smiles, laughter, and eventually speech that characterizes the normal baby and toddler.
5. Motor coordination: Gross motor movements are clumsy and uncoordinated. Posture and gait appear odd. Most HFA kids are poor at games involving motor skills, and sometimes the executive problems affect the ability to write or draw. Stereotyped movements of the body and limbs are also evident.
6. Non-verbal communication: Non-verbal aspects of communication are also affected. There may be little facial expression except with strong emotions (e.g., anger or distress). Vocal intonation tends to be monotonous and droning, or exaggerated. Gestures are limited, or else large and clumsy and inappropriate for the accompanying speech. Comprehension of others’ expressions and gestures is poor, and the HFA child may misinterpret or ignore such non-verbal signs. At times he may earnestly gaze into another person's face, searching for the meaning that eludes him.
7. Over-valued ideas: The tendency found in HFA children to sensitivity and over-generalization of the fact that they are criticized and made fun of may be mistaken for paranoid tendencies. Those who are pre-occupied with abstract theories or their own imaginary world may be said to have delusions. For example, one boy with ASD was convinced that Batman would arrive one day and take him away as his assistant. No rational argument could persuade him otherwise. This type of belief could be called a delusion, but is probably better termed an “over-valued idea.” It does not have any specific diagnostic significance, since such intensely held ideas can be found in different psychiatric states.
8. Repetitive activities and resistance to change: Kids with ASD often enjoy spinning objects and watching them until the movement ceases, to a far greater extent than normal. They tend to become intensely attached to particular possessions and are very unhappy when away from familiar things and places.
9. Skills and interest: Young people with the disorder have certain skills as well as deficits. They have excellent rote memories and become intensely interested in one or two subjects (e.g., astronomy, geology, the history of the steam train, the genealogy of royalty, bus time-tables, prehistoric monsters, characters in a television series, etc.) to the exclusion of all else. They absorb every available fact concerning their chosen field and talk about it at length, whether or not the listener is interested, but have little grasp of the meaning of the facts they learn. They may also excel at board games needing a good rote memory (e.g., chess). However, some have specific learning problems affecting arithmetical skills, reading, or writing.
10. Speech: The HFA youngster usually begins to speak at the age expected in “normal” kids; however, walking may be delayed. A full command of grammar is sooner or later acquired, but there may be difficulty in using pronouns correctly, with the substitution of the second or third for the first person forms. The content of speech is abnormal, tending to be pedantic and often consisting of lengthy speeches on favorite subjects. Sometimes a word or phrase is repeated over and over again in a stereotyped fashion. The youngster may invent some words. Subtle verbal jokes are not understood, though simple verbal humor may be appreciated.
So, there you go. You thought it was “bad parenting” on your part. Well now you know differently. These issues simply come with the territory. However, you do need to understand that you can NOT parent your HFA child and your "neurotypical" (non-AS) child in the same way. The mind of your “special needs” child is wired differently.
Think of it like this: Let's say you have 2 children. One speaks English, and the other speaks French. You have learned to speak both languages. So, which language will you use when you are trying to get your point across to the French-speaking child? French, of course! But too many parents are speaking a foreign language to their HFA kids, and then they wonder why they "don't get it."
It's not that your HFA child "doesn't hear" you. Rather, he "doesn't understand" you. When you try to teach your child how to behave, you must know how he thinks and what language he understands. Don't speak "neurotypical" to an "autistic."
Resources for parents of children and teens on the autism spectrum:
More articles for parents of children and teens on the autism spectrum:
Social rejection has devastating effects in many areas of functioning.
Because the ASD child tends to internalize how others treat him,
rejection damages self-esteem and often causes anxiety and depression.
As the child feels worse about himself and becomes more anxious and
depressed – he performs worse, socially and intellectually.
Meltdowns are not a pretty sight. They are somewhat like overblown
temper tantrums, but unlike tantrums, meltdowns can last anywhere from
ten minutes to over an hour. When it starts, the Asperger's or HFA child
is totally out-of-control. When it ends, both you and your child are
totally exhausted. But... don’t breathe a sigh of relief yet. At the
least provocation, for the remainder of that day -- and sometimes into
the next - the meltdown can return in full force.
Although Aspergers [high-functioning autism] is at the milder end of the
autism spectrum, the challenges parents face when disciplining a
teenager on the spectrum are more difficult than they would be with an
average teen. Complicated by defiant behavior, the teen is at risk for
even greater difficulties on multiple levels – unless the parents’
disciplinary techniques are tailored to their child's special needs.
Your older teenager or young “adult child” isn’t sure what to do, and
he is asking you for money every few days. How do you cut the purse
strings and teach him to be independent? Parents of teens with ASD face
many problems that other parents do not. Time is running out for
teaching their adolescent how to become an independent adult. As one
mother put it, "There's so little time, yet so much left to do." Click here to read the full article…
Two traits often found in kids with High-Functioning Autism are
“mind-blindness” (i.e., the inability to predict the beliefs and
intentions of others) and “alexithymia” (i.e., the inability to
identify and interpret emotional signals in others). These two traits
reduce the youngster’s ability to empathize with peers. As a result, he
or she may be perceived by adults and other children as selfish,
insensitive and uncaring. Click here to read the full article...
Become an expert in helping your child cope with his or her
“out-of-control” emotions, inability to make and keep friends, stress,
anger, thinking errors, and resistance to change.
A child with High-Functioning Autism (HFA) can have
difficulty in school because, since he fits in so well, many adults
may miss the fact that he has a diagnosis. When these children display
symptoms of their disorder, they may be seen as defiant or disruptive.
"We have generally been against trying medication, even to treat the worst symptoms of our autistic child, but is there a point at which the advantages of some form of drug treatment outweigh the disadvantages?"
To answer this question, we will need to look at six clusters of symptoms. They are a convenient way of talking about drug treatments for the common kinds of behaviors that hinder the lives of children and teens who have Asperger’s (AS) and High-Functioning Autism (HFA).
These clusters are not comprehensive, but were chosen because they are common reasons to seek drug treatment for HFA:
1. Inflexibility and Behavioral Rigidity: Symptoms of inflexibility or behavioral rigidity are often difficult to quantify, and yet often introduce some of the most disruptive chronic behaviors exhibited by children with HFA. These can be manifest by minor differences in the environment (e.g., changes in location for certain activities), difficulties tolerating changes in routine, and changes to plans that have been previously laid out.
For some of these “special needs” kids, this inflexibility can lead to aggression, or to extremes of frustration and anxiety that thwart activities. Parents may find themselves “walking on eggshells” in an effort to circumvent any extreme reaction from their “fragile” child. Also, theHFA child himself may articulate his anxiety over fears that things will not go according to plan, or that he will be forced to make changes that he can’t handle. Sometimes these behaviors are identified as “obsessive-compulsive” because of the child’s need for ritualized order or nonfunctional routine.
It is not known whether these symptoms are produced by disturbances in the same cortico-striatal-thalamo-cortical circuitry that is believed to produce OCD. However, the model of obsessive-compulsive disorder has suggested that use of SRI agents can be useful in ameliorating this problem. Whether the effect of SRI medications on this symptom cluster is mediated by a general reduction in anxiety, or is specific for “needs for sameness” is not known. Reports from studies of alpha-adrenergic medications (e.g., clonidine, guanfacine) also suggest a decrease in these rigid behaviors.
2. Stereotypies and Perseveration: Stereotyped movements and repetitive behaviors are a common feature of HFA. As with behavioral rigidity and inflexibility, similar models for stereotypy and obsessive-compulsive disorder have been proposed. Stereotypy also may be closely related to tic disorders in which repetitive behaviors emerge from impairment in dopaminergic and glutamaturgic systems.
The treatments for stereotyped movements and perseveration closely parallel those for behavioral inflexibility, and the two clusters are often grouped together in studies of treatment effectiveness. Thus, serotonin reuptake inhibitors and alpha-adrenergic agonists may be helpful. Also, the hypothesis that dopamine may play a role suggests that dopaminergic blocking agents should be added to the possibilities. Reports from studies of olanzapine, risperidone, and ziprasidone suggest this is warranted.
3. Hyperactivity and Inattention: Hyperactivity and inattention are common in HFA kids, particularly in early childhood. Differential diagnostic considerations are vital, particularly in the context of AS and HFA. Hyperactivity and inattention are seen in a variety of other disorders (e.g., developmental receptive language disorders, anxiety, and depression). Therefore, the appearance of inattention or hyperactivity does not point exclusively to ADHD. The compatibility of the child and her school curriculum is particularly important when evaluating symptoms of hyperactivity and inattention. There is a risk that a school program that is poorly matched to the child's needs (e.g., by over-estimating or under-estimating her abilities) may be frustrating, boring, or unrewarding. If the verbal or social demands exceed what she can manage, they may produce anxiety or other problems that mimic inattention or induce hyperactivity.
Virtually every variety of medication has been tried to reduce hyperactive behavior and increase attention. The best evidence at this point supports dopamine blocking agents, stimulants, alpha-adrenergic agonists, and naltrexone.
4. Anxiety: Young people with HFA are particularly vulnerable to anxiety. This vulnerability may be an intrinsic feature of ASD through a breakdown in circuitry related to extinguishing fear responses, a secondary consequence of their inability to make social judgments, or specific neurotransmitter system defects.
The social limitations of HFA make it difficult for these “special needs” children to develop coping strategies for soothing themselves and containing difficult emotions. Limitations in their ability to grasp social cues and their highly rigid style act in concert to create repeated social errors. They are frequently victimized and teased by their peers and can’t mount effective socially adaptive responses.
Limitations in generalizing from one situation to another also contributes to repeating the same social mistakes. In addition, the lack of empathy severely limits skills for autonomous social problem-solving. For higher functioning kids on the autism spectrum, there is sufficient grasp of situations to recognize that others “get it” when they do not. For others, there is only the discomfort that comes from somatic responses that are disconnected from events and experience.
Several agents have been tried for treatment of anxiety. There is no reason to suspect that children with autism are less likely to respond to the medications used for anxiety in children without autism. Therefore, SRIs, buspirone, and alpha-adrenergic agonist medications (e.g., clonidine, guanfacine) all have been tried. The best evidence to date supports use of selective serotonin reuptake inhibitors. (Note: Kids with HFA may be more vulnerable to side effects and to exhibit unusual side effects.)
5. Depression: Depression seems to be common among teens and young adults with HFA. Many of the same deficits that produce anxiety may conspire to generate depression. There is also good evidence that serotonin functions may be impaired in young people with autism. The basic circuitry related to frontal lobe functions in depression may be affected. In addition, deficits in social relationships and responses that permit one to compensate for disappointment and frustration may fuel a vulnerability to depression. There is some genetic evidence suggesting that depression and social anxiety are more common among first-degree relatives of autistic kids, even when accounting for the subsequent effects of stress.
The medications that are useful for depression in “typical” kids and teens should be considered for those with HFA who display symptoms of depression. Since some features of depression and autism overlap, it is important to track that the changes in mood are a departure from baseline functioning. Therefore, the presence of social withdrawal in a child with HFA should not be considered a symptom of depression unless there is an acute decline from that child's baseline level of functioning.
The core symptoms of depression should arise together. Therefore, the simultaneous appearance of symptoms (e.g., decreased energy, further withdrawal from interactions, irritability, loss of pleasure in activities, sadness, self-deprecating statements, sleep and appetite changes, etc.) would point to depression.
Children and teens on the autism spectrum who display affective and vocal monotony are at higher risk for having their remarks minimized. They can make suicidal statements in a manner that suggests an off-hand remark without emotional impact. When comments are made this way, parents may underestimate them. In young people with HFA, the content of such comments may be more crucial than the emotional emphasis with which they are delivered.
Drugs that are useful for treatment of depression in children with HFA are serotonin reuptake inhibitors. There also may be indications for considering tricyclic agents with appropriate monitoring of ECG, pulse, and blood pressure. There are no medications that have been shown to be particularly more beneficial for depressive symptoms in children on the spectrum. Therefore, the decision as to which ones to use is determined by side effect profiles, previous experience, and responses to these medications in other family members.
6. Aggression: Aggression is seldom an isolated problem and is particularly complex in children with AS and HFA. It is important to understand that aggressive behavior is not always associated with just one condition and can have highly varied sources. An array of theoretic models has been proposed to understand aggressive behavior in kids on the spectrum. There are promising biologic models that suggest the behavior arises from alterations in dopaminergic reward mechanisms, and cognitive models suggesting that such acts are an outcome of conditioned learning. Tantrums and physical aggression are often responses to a variety of circumstances and occur in the context of diverse emotions.
It is useful to know the circumstances preceding and following aggressive outbursts before selecting a particular medication. For instance, when aggression is a response to anxiety or frustration, the most helpful interventions target those symptoms and the circumstances that produce them rather than exclusively focusing on aggressive behavior.
Unfortunately, the request for drug treatment typically follows a crisis, and the press for a rapid, effective end to the behavior problems may not permit the gathering of much data or discussion. Nonetheless, it is NOT appropriate to “always” begin with one agent or another. Moving to a more “reliable” medication too quickly may mean that the child takes on cardiovascular, endocrinologic, and/or cognitive risks that may be otherwise avoided.
There are reports in support of using serotonin reuptake inhibitors, alpha-adrenergic agonists, beta-blocking agents, mood stabilizers, and neuroleptics for aggressive behavior. When a doctor has the luxury of time, the support of family, and collaboration with staff where the child is attending school, then a drug that is safer, but perhaps takes a longer time to work or is a little less likely to help, can be tried.
In addition to cognitive and behavioral interventions, many children and teens on the autism spectrum are helped by medications (e.g., selective serotonin reuptake inhibitors, antipsychotics, stimulants, etc.) to treat the associated problems listed above. Experts agree that the earlier interventions are started, the better the outcome. With increased self-awareness and therapy, most kids and teens learn to cope with the challenges of AS and HFA.
Resources for parents of children and teens on the autism spectrum:
More articles for parents of children and teens on the autism spectrum:
Social rejection has devastating effects in many areas of functioning.
Because the ASD child tends to internalize how others treat him,
rejection damages self-esteem and often causes anxiety and depression.
As the child feels worse about himself and becomes more anxious and
depressed – he performs worse, socially and intellectually.
Meltdowns are not a pretty sight. They are somewhat like overblown
temper tantrums, but unlike tantrums, meltdowns can last anywhere from
ten minutes to over an hour. When it starts, the Asperger's or HFA child
is totally out-of-control. When it ends, both you and your child are
totally exhausted. But... don’t breathe a sigh of relief yet. At the
least provocation, for the remainder of that day -- and sometimes into
the next - the meltdown can return in full force.
Although Aspergers [high-functioning autism] is at the milder end of the
autism spectrum, the challenges parents face when disciplining a
teenager on the spectrum are more difficult than they would be with an
average teen. Complicated by defiant behavior, the teen is at risk for
even greater difficulties on multiple levels – unless the parents’
disciplinary techniques are tailored to their child's special needs.
Your older teenager or young “adult child” isn’t sure what to do, and
he is asking you for money every few days. How do you cut the purse
strings and teach him to be independent? Parents of teens with ASD face
many problems that other parents do not. Time is running out for
teaching their adolescent how to become an independent adult. As one
mother put it, "There's so little time, yet so much left to do." Click here to read the full article…
Two traits often found in kids with High-Functioning Autism are
“mind-blindness” (i.e., the inability to predict the beliefs and
intentions of others) and “alexithymia” (i.e., the inability to
identify and interpret emotional signals in others). These two traits
reduce the youngster’s ability to empathize with peers. As a result, he
or she may be perceived by adults and other children as selfish,
insensitive and uncaring. Click here to read the full article...
Become an expert in helping your child cope with his or her
“out-of-control” emotions, inability to make and keep friends, stress,
anger, thinking errors, and resistance to change.
A child with High-Functioning Autism (HFA) can have
difficulty in school because, since he fits in so well, many adults
may miss the fact that he has a diagnosis. When these children display
symptoms of their disorder, they may be seen as defiant or disruptive.
