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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

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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.

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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.

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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.

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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."

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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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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...