A Crash Course for Parents of Newly Diagnosed Kids

"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."

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.

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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.

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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.

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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."

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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.

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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.

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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.

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Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt

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