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Is a Formal “Diagnosis” of ASD Helpful or Harmful?

"After researching the info on this site, my husband and I believe our child is on the autism spectrum. I'm all for going to a doctor to have him diagnosed, but my husband is dead set against it because he thinks our son will be discriminated against once he has 'the label'. SO... my question is does a diagnosis cause more harm than good?"

Diagnosis has traditionally been the route by which children with Asperger’s (AS) or High-Functioning Autism (HFA) and their parents have accessed specialist services. But this tradition has grown out of the services for kids on the autism spectrum who were severely disabled by their disorder under all circumstances. The group of children with AS and HFA include those whose social impairment is arguable.

What about the father whose child is diagnosed with AS, and his wife begins to think of her frustrations with her husband during the marriage? Does the husband become socially impaired because he is suspected of having AS? Is a timid father with an eccentric manner who is nevertheless devoted to his wife and youngster socially impaired? Is a loner with a passionate interest in old diesel engines socially impaired?

Checking off the boxes is not sufficient for making a diagnosis. Making a diagnosis has to result in a useful product for the client. There is no hard and fast rule about whether a diagnosis of AS or HFA will be useful. A decision needs to be made in each case, usually following an open discussion about what benefits or costs the client anticipates from a diagnosis. And the situation may change.

An AS or HFA teenager who is facing unemployment because he is acting strangely and whose routines at home are becoming a major source of harassment for his mom and dad, may in a year or two be coping well and happily with another job and be a pleasant (if eccentric) house companion. Although a diagnosis might have been useful on the first occasion, it may be unhelpful on the second.

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

There are many other conditions in medicine that are dimensional and not categorical, and that may dip in and out of the pathologic range (e.g., hypertension). They require a different kind of management. The family physician must remember that his patient had a raised blood pressure once, and that it needs to be checked from time to time without treating the patient as if he or she has a current disorder.

For psychiatric services dealing with people with AS and HFA, this translates into being able to maintain contact with grown-ups with AS and HFA, perhaps over long periods and without specific treatment; or, alternatively, it translates into enabling people with AS and HFA to access services for themselves and giving them the means to decide when it is in their best interest to do so.

People with AS and HFA may need help particularly during developmental transitions and during crises. Specialist psychiatric help may not be needed at these times, although help from someone who is knowledgeable about autism spectrum disorders and comfortable relating to the affected individuals is important. However, there are some crises that call for specialist psychiatric or psychologic help. These include crises associated with psychiatric comorbidity and forensic problems.

AS and HFA can be misdiagnosed as a number of other disorders, leading to medications that are unnecessary – or that worsen behavior! For example, there is much overlap between AS and NLD. Both have symptoms of precocious reading, verbosity, and clumsiness. But, they differ in that kids with AS have restricted interests, repetitive behaviors, and less-typical social interactions. Diagnostic confusion burdens children and their parents and may cause them to seek useless therapies.

Disorders that must be considered in a differential diagnosis include:
  • attention-deficit hyperactivity disorder
  • depression
  • multiple complex developmental disorder
  • nonverbal learning disorder (NLD) 
  • obsessive compulsive disorder
  • other pervasive developmental disorders (e.g., autism, PDD-NOS, childhood disintegrative disorder, Rett disorder)
  • schizophrenia spectrum disorders (e.g., schizophrenia, schizotypal disorder, schizoid personality disorder)
  • semantic pragmatic disorder

Tourette syndrome (TS) should also be considered in differential diagnosis. Other conditions to be considered in the differential diagnosis include:
  • bipolar disorder
  • birth trauma
  • conduct disorder
  • Cornelia De Lange syndrome
  • dyslexia
  • Fahr syndrome
  • fetal alcohol syndrome
  • fragile X syndrome
  • hyperlexia
  • leukodystrophy
  • multiple sclerosis
  • selective mutism
  • stereotypic movement disorder
  • traumatic brain injury
  • Triple X syndrome

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

Diagnosis may be particularly helpful if it results in services provided to the affected child in the area of social skills training. Due to social skills deficits, children with AS and HFA find themselves socially isolated. Reasons for this include, but are not limited to, the following:
  • Chronically frustrated by their repeated failures to engage others and form friendships, some kids on the autism spectrum develop symptoms of a mood disorder that may require treatment.
  • Social skills deficits are largely responsible for the impression of social naiveté and behavioral rigidity that is so forcefully conveyed by these children.
  • The communication style of children with AS and HFA is often characterized by marked verbosity. The youngster may talk incessantly (usually about a favorite subject) often in complete disregard as to whether the listener is interested, engaged, or attempting to interject a comment, or change the subject of conversation. Despite such long-winded monologues, the AS or HFA child may never come to a point or conclusion. Attempts by the listener to elaborate on issues of content or logic, or to shift the interchange to related topics, are often unsuccessful.
  • Their poor intuition and lack of spontaneous adaptation are accompanied by marked reliance on formalistic rules of behavior and rigid social conventions. 
  • There is a lack of contingency in speech that is a result of (a) the one-sided, egocentric conversational style (e.g., unrelenting monologues about the names, codes, and attributes of innumerable TV stations in the country), (b) failure to provide the background for comments and to clearly establish changes in topic, and (c) failure to suppress the vocal output accompanying internal thoughts. 
  • They may be able to describe correctly (in a cognitive and often formalistic fashion) other people's emotions, expected intentions, and social conventions; however, they are unable to act on this knowledge in an intuitive and spontaneous fashion, thus losing the tempo of the interaction. 
  • They may express an interest in friendships, but their wishes are invariably thwarted by their awkward approaches and insensitivity to the other person's feelings, intentions, and nonliteral and implied communications (e.g., signs of boredom, haste to leave, and need for privacy, etc.). 
  • They may react inappropriately to the context of the affective interaction, often conveying a sense of insensitivity, formality, or disregard for the other person's emotional expressions. 
  • They typically approach others, but in an inappropriate or eccentric fashion (e.g., they may engage the listener in one-sided conversation characterized by long-winded, pedantic speech about a favorite, unusual and narrow topic).

Social skills training that would effectively address the issues listed above would suggest that the advantages outweigh any disadvantages of receiving a formal diagnosis.

There are positives and negatives associated with a psychiatric diagnosis – and the diagnostic process generally. Unlike most physical disorders, there is a higher degree of uncertainty attached to a psychiatric diagnosis. The systems of classification that have been developed attempt to reduce this uncertainty, but personal interpretations still play a huge factor. And when a diagnosis is reached, there is the problem of “labeling.”

Labels (i.e., the diagnosis) applied to “special needs” children suggest they are different. To those unfamiliar with autism spectrum disorders, these kids may be viewed as abnormal, making them feel distrustful or anxious? The label itself can result in a self-fulfilling prophecy (i.e., it can result in the child viewing himself as abnormal) and can bias the way parents, teachers, and other adults view the child.

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

In any event, there are times where a diagnosis is helpful, and there may be times when the child or teen is better off without the “label.” The decision to seek a formal diagnosis is ultimately up to parents.

In the case of an adult, the decision should be his or hers alone. Diagnosis as an adult can be a mixed blessing. Some people decide they are O.K. with being self-diagnosed and decide not to ask for a formal diagnosis. However, for those who DO want a formal diagnosis, there may be a variety of benefits.

It’s never a bad idea for an individual to increase self-awareness in order to capitalize on strengths and work around areas of challenge. Knowing about AS or HFA gives the individual an explanation, not an excuse, for why his or her life has taken the twists and turns that it has. What one does with this information at the age of 20, 30 or 70 may differ, but it is still important information to have in many cases.

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

==> 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

Do We Really Want to “Cure” Asperger’s/High-Functioning Autism?

Is it possible that everyone has a touch of Asperger’s (AS), also called High-Functioning Autism (HFA)? Think about it: all the features that characterize AS and HFA can be found in varying degrees in the “normal” population. For example:
  • A lot of people can engage in tasks (sometimes mundane ones) for hours and hours.
  • A number of “normal” people have outstandingly good rote memories and even retain eidetic imagery into adult life. 
  • Collecting objects (e.g., stamps, old glass bottles, railway engine numbers, etc.) are socially accepted hobbies.
  • Everyone differs in their levels of skill in social interaction and in their ability to read nonverbal social cues. 
  • Many individuals are visual, three-dimensional thinkers.
  • Many people can pay attention to detail – sometimes with painstaking perfection.
  • Many who are capable and independent as grown-ups have special interests that they pursue with marked enthusiasm.
  • Most men - and many women - prefer logic over emotion.
  • Pedantic speech and a tendency to take things literally can also be found in “normal” individuals.
  • The capacity to withdraw into an inner world of one's own special interests is available in a greater or lesser measure to all human beings.
  • There is an equally wide distribution in motor skills.

Other “autistic” traits that many “typical” people experience include:
  • Clumsiness
  • Don't always recognize faces right away 
  • Have a speech impediment early in life
  • Eccentric personality 
  • Flat, or blank expression 
  • Highly gifted in one or more areas 
  • Intense focus on one or two subjects 
  • Likes and dislikes can be very rigid 
  • Limited interests
  • May have difficulty staying in college despite a high level of intelligence
  • Preoccupied with their own agenda 
  • Repetitive routines or rituals 
  • Sensitivity to the texture of foods 
  • Single-mindedness 
  • Unusual preoccupations 
  • Difficulty understanding others’ feelings 
  • Great difficulty with small-talk and chatter
  • Has an urge to inform that can result in being blunt or insulting 
  • Lack of empathy at times
  • Lack of interest in other people 
  • May avoid social gatherings 
  • Preoccupied with their own agenda 
  • Social withdrawal
  • Can often be distant physically and/or emotionally

The list above is by no means exhaustive.

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

It is possible that some people are classified as having AS or HFA because they are at the extreme end of the normal continuum on ALL these features – or one particular aspect may be so marked that it affects the whole of their functioning?

The argument could be made that the difference between someone with AS/HFA and the “typical” individual who has a complex inner world is that the latter DOES take part appropriately in two-way social interaction, while the former does NOT. Also, the typical person, however elaborate his inner world, is influenced by his social experiences, whereas the person with AS/HFA seems cut off from the effects of outside contacts.

So, now a new question arises: Is it possible that AS and HFA are simply reflections of object-oriented individuals (i.e., those who have a preference for ideas, tasks and objects) versus people-oriented individuals (i.e., those who prefer social interaction over all else)? If so, does this preference make for a “disorder”?

Also, if we should view AS/HFA as a disorder, whose problem is it? Is it a problem for the person with the disorder, or for the people who have dealings with the affected person? If “normal” people have difficulty with AS/HFA individuals, but AS/HFA individuals are O.K. with themselves, then it would seem that the “typicals” own the disorder.

What if we stopped viewing AS and HFA as abnormal? Many individuals on the autism spectrum embrace their condition. Rather than seeking a “cure,” they seek respect for “neurodiversity.” They want to show that autism does NOT mean “limited,” rather it is simply a different way of thinking and viewing the world. Individuals with differently wired brains have always existed – some of them geniuses because of their autistic traits, not despite them.

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

Neurodiversity is the idea that neurological differences (e.g., AS, HFA, ADHD) are the result of natural variation in the human genome (i.e., an organism’s complete set of DNA). This represents a new way of looking at disorders that were traditionally characterized as medically or psychologically abnormal.

Neurodiversity is a viewpoint that is not universally accepted, although it is increasingly supported by science.  This science proposes that disorders like AS and HFA have a stable prevalence in human society as far back as we can measure.  We are realizing that developmental disorders emerge through a combination of genetic predisposition and environmental interaction – not the result of injury or disease. 

Talk of “cure” feels like an attack on the very being of many AS and HFA individuals. Some hate that word for the same reason other groups dislike talk of “curing gayness.” Thus, shouldn’t the accommodation of neurological differences be a similarly charged civil rights issue? If their diversity is part of their true nature, shouldn’t they have the right to be accepted and supported “as is?” 

Neurodiverse individuals have contributed many great things to human society.  If those contributions were truly influenced by neurological differences, then an attempt to “cure” such differences would seem to be extremely damaging to humanity.

Highly Acclaimed Parenting Programs Offered by Online Parent Support, LLC:

==> 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

  • Anonymous said… This is an excellent article! In my experience the window of 'neurotypical' is getting narrower and narrower. I have to chuckle when I hear all the labeling and categorizing of people these days - aren't 'labeling' and 'categorizing' hallmarks of Aspergers and HFA? What does that say about our society? People with Aspergers and HFA don't need to be cured. Neurotypicals need to be less rigid in their thinking regarding the wonderful range and diversity of the human brain:)
  • Anonymous said…I know I may be biased, partly due to the fact that I am Autistic. Yet I see many things on that list that apply to me and I don't see some of them as being entirely positive. Autism is generally identified as a multitude of these factors acting as either deficits or the brain's attempt at compensating for these deficits. If one is low functioning the factors contributing towards their Autism may almost be crippling. I am high functioning and I was torn to pieces before even attempting this post, yet I ferl strongly enough to attempt to advocate for those of us who tend to live with society's expectation that we should be the second coming of "Rain Man". Yet even as I undertake a course at Uni for Disability Studies, and don't see the academic value of this article, I do see where it is coming from. I do however, have to ask a question, can't these factors existing in almost everyone, be simply accredited to Human Diversity? Why must we glorify Autism and state (dangerously), that everyone has a degree of Autism in them? Because that in my perspective, sensationalises the stereotype that we all possess superhuman abilities. Sorry for the spiel, I do respect the article, but it is an important idea to raise.

Sexual Deviation in ASD Teens and Young Adults

"Do some teens with ASD make awkward advances to the opposite sex, which are viewed as harassment? Our 17 y.o. was recently called down to the Dean's office for 'making inappropriate advances' to a girl he has a crush on!"

Perhaps the most obvious trait of Asperger’s (AS) and High Functioning Autism (HFA) is impairment of two-way social interaction. This is not due primarily to a desire to withdraw from social contact. Rather, the problem arises from a lack of ability to understand and use the rules governing social behavior.

These rules are complex, unwritten and unstated, constantly changing, and affect choice of clothing, eye contact, gesture, movement, posture, proximity to others, speech, and many other aspects of behavior.

The degree of skill in this area varies among “typical” people, but those with AS and HFA are outside the normal range, for example:
  • Many are over-sensitive to criticism and suspicious of others.
  • Some have a history of rather bizarre antisocial acts (perhaps because of their lack of empathy). 
  • Their social behavior is peculiar and naive.
  • They do not have the intuitive knowledge of how to adapt their approaches and responses to “fit in” with the needs and personalities of others. 
  • They may be aware of their difficulties – and even strive to overcome them – but in inappropriate ways.

Relations with the opposite sex provide a good example of the more general social ineptitude in AS and HFA. One 26-year-old male with AS observed that most of his peers had girlfriends and eventually married and had kids. He wished to be “normal” in this respect, but had no idea how to indicate his interest and attract a partner in a socially acceptable way. He asked some of his friends for a list of rules for talking to females, and tried to find “the secret” in various books. He had a strong sex drive, and on one occasion approached and kissed a female he had a crush on. As a consequence, he found himself in trouble with the police, and later tried to solve the problem by becoming solitary and withdrawn.

==> Discipline for Defiant Aspergers and High-Functioning Autistic Teens

Possibly because of the absence of a reference group, sexual interests among individuals with AS and HFA may be unusual, for example:
  • AS and HFA males may become addicted to adult internet sites, and a few have attracted police attention by downloading pictures of kids.
  • Fetishes are not uncommon and may occasionally lead to forensic problems, as with the person with AS who liked to impersonate doctors and ask women intimate questions about reproduction. 
  • Many young people with AS and HFA manage to suppress their sexuality. 
  • Teens with AS and HFA may relate better to younger kids than they do to their peer group, and may occasionally make inappropriate sexual approaches to them. Older teens – and even some grown-ups – may idealize childhood, and may be sexually attracted to kids for that reason. 
  • Young people with AS and HFA may rarely get into trouble indecently exposing themselves, but this may turn out to be something that someone else (often a girl) put them up to.

Stalking is the area in which the sex life of young people on the autism spectrum gives most cause for concern. “Crushes” are common in the teenage years, and young men with AS and HFA often develop them. Although “typical” teens are aware that their feelings are not going to be reciprocated by the opposite sex, this may not be obvious to the teenager with AS or HFA who may become inappropriately attached.

There is usually an initial phase during which the object of the attraction (the female) feels a bit flattered, a bit alarmed, or very caring toward the AS or HFA male who has become fixated on her. However, there may be phone calls, inappropriate notes, or statements made to others that lead the female who is the object of adoration to decide that “enough is enough.”

There is usually a confrontation that is often clumsily handled because the object of adoration is frequently someone like a teacher or nurse who has a duty of care for the AS or HFA male. The problems begin if this rejection is not accepted. The object of adoration may become an object of hatred and may be targeted with abusive calls or letters by the AS or HFA male. The female’s friends may be the victims of jealous attacks, or the female may be followed.

==> Discipline for Defiant Aspergers and High-Functioning Autistic Teens

How can parents and teachers help? Start by providing a few straightforward relationship tips. For example:
  1. Ask the girl how she's doing or what she's reading instead of commenting on her body parts.
  2. Be aware of the girl’s personal space.
  3. If she ignores you, drops eye contact, or walks away, back off. 
  4. It’s not rude of you to approach a girl, but understand that she is not being rude if she doesn't want to keep talking to you, especially if you initiated conversation while she was running an errand, waiting for the bus, or on her computer at a coffee shop.
  5. Look at her face instead of her chest. 
  6. Males are socialized to think that females don't really say what they mean. Wrong! Take her words at face value.
  7. Not all greetings are out of bounds. There is the matter of context. For example, early-morning dog-walkers may offer courteous "good mornings" as they pass each other on the sidewalk. However, commenting on a woman's form as she walks past is not acceptable. 
  8. Talk “to” the girl, not “at” her. 
  9. Know that there can be a fine line between flirtation and harassment.
  10. Above all, treat her with respect.

Most AS and HFA males will want a girlfriend, but may feel shy or intimidated when approaching the opposite sex. They may feel "different" from others. Although most “typical” teens place emphasis on being and looking "cool," teens with AS and HFA may find it frustrating and emotionally draining to try to “fit in.”

They may be immature for their age and be naive and too trusting, which can lead to social skills deficits (especially in the world of dating), teasing and bullying. All of these difficulties can cause these young people to become withdrawn, socially isolated, depressed and anxious.

My child has been rejected by his peers, ridiculed and bullied !!!

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.

Click here to read the full article…

How to Prevent Meltdowns in Children on the Spectrum

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.

Click here for the full article...

Parenting Defiant Teens on the Spectrum

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.

Click here to read the full article…

Older Teens and Young Adult Children with ASD Still Living At Home

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…

Parenting Children and Teens with High-Functioning Autism

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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to read the full article...

Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

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.

Click here for the full article...