Advantages and Disadvantages of Labeling Your Child with an "Autism Spectrum Disorder"

"I know I should take my child to get assessed for ASD. Based on what I've learned from this site, I'm sure he has the disorder. But I'm torn because He may get treated poorly if he has that 'label'. Thoughts?!"

Receiving a diagnosis of Asperger’s (AS) or High Functioning Autism (HFA) can be a mixed blessing. Some individuals are happy with self-diagnosis, while others prefer to get a “formal” diagnosis so they can know for sure whether or not they have an autism spectrum disorder.

If your child receives a formal diagnosis of AS or HFA, there are going to be a number of benefits as well as difficulties associated with getting “the label.” In this post, we will look at the advantages and disadvantages of getting labeled with a developmental disorder.

First, let’s look at some of the disadvantages of labeling:

1. A label is simply a cognitive shortcut (i.e., a term used to represent a series of characteristics), but it is useful only if people are mindful of the fact that they are using it as a shortcut. When people lose that mindfulness, a label becomes a stereotype.

2. All kids have some problematic behaviors. Labels can exaggerate a child’s actions in the eyes of parents, teachers, and others. Adults may overreact to the behavior of a labeled child that would be tolerated in another child.

3. Children on the autism spectrum can’t receive special education services until they are labeled. In many cases, the intervention comes too late. The need to label children before help arrives undermines a preventive approach to the mild learning problems associated with AS and HFA.

4. Labeling a child gives others the ability to “pigeonhole” or make assumptions about him or her based on the diagnosis, or their understanding of the diagnosis. This can lead people to make decisions and judgments about the child based on the diagnosis rather than on the needs and characteristics of the child.

5. Labels perpetuate the notion that children with AS and HFA are qualitatively different from their peers. This is not always true. Children on the high end of the autism spectrum go through most of the same developmental stages as other kids, although sometimes at a slower rate.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

6. Labels shape the expectations of parents, teachers, peers, and others. Imagine that you are a teacher. What would your reaction be if the principal informed you that the new child in your class has an Autism Spectrum Disorder (ASD)? Research on teacher expectations has demonstrated that what teachers believe about student capability is directly related to student achievement. Thus, if a teacher lowers her expectations of a student on the autism spectrum, statistically speaking, that student will be less likely to perform at the level he or she could without the ASD label.

7. People may confuse the child with the label. When a child is placed in a particular category, people who know some of the traits of that category may attribute ALL known traits to the child. This is called stereotyping. Stereotypes hurt children when people rationalize his or her behavioral problems by citing traits of the label.

8. Research shows that children and teens known to have AS and HFA are more vulnerable to stigma and discrimination – especially from peers (e.g., teasing, bullying, peer-rejection).

Advantages and Disadvantages of Being Labeled "Autistic" 

Next, we will look at some of the advantages of labeling:

1. A label (i.e., a formal diagnosis) provides a framework within which to understand the disorder. By noticing which symptoms seem to show up together, then noticing which cluster of symptoms a particular child seems to fall into, treatment decisions can be informed by what has - or has not - worked for other children with similar clusters of symptoms.

2. By labeling the disorder, it is easier to address any problems that are associated with it, and allows parents and teachers the opportunity to maximize the positive aspects of the disorder. Young people on the autism spectrum often have a unique ability to focus, and to catalogue detailed information about their areas of interest. In many cases, these talents can be put to very positive, constructive uses. One only needs to look at the celebrities who some suggest may qualify - or may have qualified - for an ASD diagnosis to realize what talents can be associated with what is called a “disorder.”

3. Children and teens on the spectrum have known they face certain difficulties for a long time – without being able to explain why! A label can be a relief because it allows them to learn about their disorder, to understand why they find some things so difficult, and indeed, why they are very good at some things.

4. Diagnoses can serve as a sort of cognitive shortcut. Rather than list all of a child’s symptoms individually, therapists can name the cluster and understand the child more quickly, speeding communication.

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

5. For moms and dads, the diagnosis and label usually provides them with a sense of relief. Many parents say that they have known that something was “wrong,” but felt that they could not get “the problem” properly identified. When such issues are identified and labeled, parents are better able to understand the nature of the challenges and how to address them.

6. Having a diagnosis is the key to getting autism-specific support (i.e., support that is provided by people who understand AS and HFA, as well as the specific difficulties associated with it).

7. Having received a diagnosis, a youngster on the autism spectrum can tell other family members, friends, and classmates about it (if she wants to), perhaps giving them some information about the disorder. This helps others to understand autism. When the people who are close to the AS or HFA child understand that there is a reason for her difficulties, it's much easier for them to empathize with her and offer support.


8. If a child has AS or HFA, but doesn’t know it, it affects him anyway. If the child does know, he can learn to minimize the negative impact – and leverage the positive!

9. Knowing about AS or HFA gives the child or teen an explanation – not an excuse – for why her life has taken the twists and turns that it has.

10. Labeling providing parents and teachers with a way to learn about the youngster’s specific behavioral difficulties. By learning about the disorder, people can better understand its implications so that parental, teacher, and community expectations of the child are realistic, reasonable, and do not require him to meet standards that are outside his range of abilities.

11. Some adults on the autism spectrum choose to get a diagnosis for reasons connected to work (e.g., to get certain accommodations). Perhaps they are having problems finding a job, they have a job but are worried they will lose it, or they feel misunderstood by their employer or fellow employees.

12. Sometimes, young people on the autism spectrum have been misdiagnosed with mental health problems (e.g., schizophrenia). This may mean they have received inappropriate treatment or services. But with a formal diagnosis of AS or HFA, this can be rectified. Also, some young people do indeed have mental health problems, and these can be better addressed once their spectrum disorder has been identified. 

13. When young people are given the diagnosis of AS or HFA, it can validate their experiences by letting them know that others have similar experiences.

14. Without the knowledge that you have AS or HFA, you are likely to fill that void with other, more damaging explanations (e.g., “I’m a failure, weird, disappointment, not living up to my potential, etc.”).

15. Perhaps most importantly, when an individual knows exactly what he or she is dealing with (in this case, an autism spectrum disorder), accommodations specific to the disorder can be pursued. For example:

a.  an older teen or young adult can use the information to plot a course through college--
  • take classes part time to account for executive functioning/organizational challenges
  • request reasonable accommodations at school or at work
  • choose to live at home to minimize the number of changes all at once
  • prepare for a career that matches interests and abilities
  • join interest-based groups so that socializing has a purpose
  • request a single room to decrease social and sensory demands

b.  a middle-aged or older adult can use the information to--
  • work differently with helping professionals with an emphasis on concrete coaching help
  • renew and/or repair relationships
  • improve on relationships
  • pursue better matches
  • find people who share similar interests
  • find others on the spectrum with whom to compare notes
  • do a life review to understand why careers and relationships have - or have not - been successful
  • customize one’s environment to be comfortable and accommodating to the strengths and challenges of the disorder
  • ask for accommodations at work
  • pursue work that is more suitable.

It is always important to remember that no person is a diagnosis, and that no diagnosis is the person. AS or HFA is merely one quality of an individual. The person will have many other traits and aspects of his or her personality. Parents and teachers are encouraged to learn about the child FIRST, and then explore the way the diagnosis affects his or her functioning.

In a nutshell, labels are useful as a tool. However, as we all know, some people use labels as a weapon.

No comments:

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

Some parents grieve for the loss of the youngster they   imagined  they had. Moms and dads have their own particular way of dealing with the...