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The Pitfalls of Avoiding Labels: Advice for Parents of Children with High-Functioning Autism

 "What should we do exactly if we decide to go ahead and get our child diagnosed? We have our suspicions and we think it's probably time to investigate the possibility that he is on the spectrum."

Some parents know that there is something “not quite right” with their child – and they may suspect some form of autism – but they delay in seeking a formal diagnosis for fear that their child will be “labeled” (e.g., “If my child gets labeled as having a ‘disorder,’ people will discriminate against him and treat him unfairly”).

In addition, schools downplay the diagnosis to give less services and save money. And worse yet, some physicians are afraid to give the diagnosis of High-Functioning Autism (Asperger’s) out of fear of frightening moms and dads, hurting their feelings, or stigmatizing their youngster.

Why do some parents resist getting a diagnosis? Here are some possible reasons:
  • I don’t want my child to get lumped into a category.
  • I need him to be “normal.”
  • We don’t want to believe it. 
  • I don’t want to be perceived as a ‘bad’ parent.
  • He’s not that bad. He’s just having a bad week/month/year.
  • I didn’t plan this into my life. 
  • I don’t have time for this. 
  • It can’t be true. It just can’t be. 
  • It’s just a phase, and he’ll grow out of it. 
  • Our doctor advised us to “wait to see.”
  • The unknown is terrifying.
  • We don’t have Autism in our family.

The stigma needs to go. High-Functioning Autism is not a horrific, hopeless diagnosis. And the longer you wait to seek and accept the diagnosis, the more precious time your youngster loses. Early Intervention is KEY!

If a child has High-Functioning Autism and doesn’t know, it affects her anyway. If she does know, she can learn to minimize the negative impact and leverage the positive. Without the knowledge that she has High-Functioning Autism, she will likely fill that void with other, more damaging explanations as to why she thinks, feels and behaves the way she does.

What are the benefits of getting the proper diagnosis?
  • If you don’t get the “High-Functioning Autism” label for your youngster, then you are leaving it to everyone in the community to give your youngster the label of their choice.
  • The sooner you get a proper diagnosis, the less valuable time you lose – time that you can never get back to help your youngster. 
  • You can’t treat it properly until you know what it is.
  • You may be eligible for appropriate services.

Some view the diagnosis of High-Functioning Autism as an untreatable, hopeless, confusing disease caused by bad parenting or defective genes. We now know that isn’t true at all. This disorder is treatable! Recovery is happening – every day. So, do not despair. There is information, support, hope, treatment and recovery. There are children healing – lots of them.

So, what should you do if you decide to seek a diagnosis for your child?

1. The first thing moms and dads should do is identify, either in the school or the community, a professional who has expertise in autism spectrum disorders. Some schools have a psychologist on staff who can evaluate children for High-Functioning Autism. Other options include a child and adolescent psychiatrist, a doctor who specializes in developmental disorders, or a psychologist in your local mental health facility. Some of these professionals are properly trained to make this diagnosis – but not always. If you go this route, ask the professional about his or her background and comfort level in diagnosing autism.

2. Be ready to discuss the following things with your doctor:
  • The youngster's medical history
  • His or her grades and behavior reports from school
  • The family's history of medical, mood, and emotional issues
  • Steps you have taken to deal with your youngster's emotional and behavioral problems
  • How he or she behaves at home

Because autism spectrum disorders vary widely in severity, making a diagnosis may be difficult. There isn't a specific medical test to determine the disorder. Instead, a specialist may:
  • Give your youngster tests covering speech, language, developmental level, and social and behavioral issues
  • Include other specialists in determining a diagnosis
  • Observe your youngster and ask how her social interactions, communication skills and behavior have developed and changed over time
  • Present structured social and communication interactions to your youngster and score the performance

3. Include the teacher’s input. Often times, “red flags” are not seen until the child enters the public school system where he is forced into a chaotic, highly social environment. Symptoms tend to come out when the High-Functioning Autistic child is doing something he finds difficult or uninteresting. When the teacher voices her concerns regarding the child’s lack of focus, the parent might say, 'I'm not quite sure what you’re talking about. Michael can play video games for several hours and has no trouble focusing.” However, life isn't a video game – it's full of things that are difficult and challenging. So, you may need to ask your youngster's teacher to fill out rating scales to present to your youngster's health care provider.

4. Identify the skills that your youngster does and doesn’t have. It is not always easy for moms and dads to see all of the specific skills that their youngster needs to learn. Some clinics use the ABLLS-R, which is an assessment for basic language and learning skills that typically-developing kids usually develop before reaching 5 years of age. There are 544 skills from 25 areas ordered from simpler to more complex in the assessment.

The ABLLS-R includes receptive and several types of expressive language, basic academics, group participation, social interaction, self-help and motor skills. Once an assessment is completed, it is easy to identify and prioritize skills that need to be taught to the youngster. Clinicians can then track the development of those skills and teach more complex skills as the less complex skills are acquired.

5. Follow through with treatment goals. The goal of treatment is to maximize your youngster's ability to function by reducing the associated symptoms and supporting development and learning. Treatment options may include:
  • Medications: No medication can improve the core signs of High-Functioning Autism, but certain medications can help control symptoms (e.g., antidepressants may be prescribed for anxiety, antipsychotic drugs are sometimes used to treat severe behavioral problems, and other medications may be prescribed if your youngster is hyperactive).
  • Family therapies: Moms and dads can learn how to play and interact with their child in ways that promote social interaction skills, manage problem behaviors, and teach daily living skills and communication.
  • Educational therapies: Kids on the autism spectrum often respond well to highly-structured educational programs. Effective programs often include a team of specialists and a variety of activities to improve social skills, communication and behavior. Preschool kids who receive intensive, individualized behavioral interventions often show great progress.
  • Behavior and communication therapies: Many programs address the range of social, language and behavioral difficulties associated with High-Functioning Autism. Programs focus on reducing problem behaviors, teaching coping skills, teaching how to act in social situations, and how to communicate better with others. Though young people on the spectrum don't always outgrow associated symptoms, most learn to function quite well.

It's a good idea to occasionally check on whether your youngster's treatment is still working as she gets older. Medications and strategies for managing her behaviors may need to be changed over time. Some kids are diagnosed with High-Functioning Autism at a later-than-average age. Many of them won’t be fully symptomatic until they reach the demands of middle school. Once they have to keep track of changing classes and a locker, trouble socializing and staying focused may become more obvious.

6. Consider getting your child on an Individual Education Plan (IEP). If you suspect your youngster needs special services at school, contact a doctor for a diagnosis as well as your youngster's school for a special education evaluation.

Yes, there's still a certain amount of stigma that is attached to having a psychiatric diagnosis. So, parents are generally concerned about their youngster being labeled early in life – and whether or not that label will stick to that youngster and follow him the rest of his life. And yes, it’s understandable that in the beginning there may be denial, and there may even be a grieving process that moms and dads go through when they're getting this news. But, bear in mind that IEPs are often as unique as the youngster. This is one of the places where it's crucial to have a label or a diagnosis, because the child can't access the services he needs unless he has an appropriate diagnosis that will allow the school to accommodate for his educational needs.

In conclusion, your child’s diagnosis directs the course of treatment. Every disorder has its own set of treatment protocols. For example, a child with generalized anxiety disorder is much different from a child who is anxious because he suffers from post-traumatic stress disorder. A professional who doesn't realize that the child’s anxiety is spurred by trauma may spend years treating the anxiety without seeing any progress. Similarly, many disorders can cause symptoms of depression, but this doesn't mean the child with these disorders has depression. Thus, without a proper diagnosis, the child with High-Functioning Autism is literally left to fend for himself. 

Ultimately, it is the responsibility of the clinician to accurately diagnose your child. However, by being a good advocate for your child, you can expedite the diagnostic process and ensure the first diagnosis you get is the right one.


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