Discussing Autism with Newly Diagnosed 9 Year Old

This week’s blog comes to us from clinical psychologist Lauren Elder and was originally posted on Autism Speaks as part of their Got Questions? series.


“Our son, age 9, was recently diagnosed with autism. He knows something’s up, but we’re not sure how to explain. Advice?”

Yours is a difficult situation shared by many parents. Children need to understand what’s going on, but the discussion needs to be appropriate for their age and level of development. Your openness will help your child feel comfortable coming to you with questions.

I recommend a series of ongoing conversations rather than a one-time discussion. Here are some tips for starting the conversation and preparing some answers for questions that your son may ask:

Explain autism in terms of your child’s strengths and weaknesses
You may want to focus on what he’s good at, and then discuss what’s difficult for him. You can explain that his diagnostic evaluation provided important information on how to use his strengths to meet his challenges. Focus on how everyone has strengths as well as weaknesses. Give some examples for yourself, his siblings and other people he knows.

Provide basic information about autism 
Depending on your son’s maturity and understanding, you may want to continue by talking about what autism means. (See our “What Is Autism?” webpage.) You want to give your child a positive but realistic picture.

It may help your son to hear that autism is common and that there are many children like him. This can open a discussion about the strengths and challenges that many children with autism share. You might likewise discuss how individuals with autism tend to differ from other children.

For instance, you might explain that many children with autism are very good at remembering things. Some excel at building things or at math. Also explain that many children with autism have difficulty making friends and communicating with other people.

Don’t make everything about autism
It’s important to emphasize that your son’s autism-related strengths and challenges are just part of who he is and why you love him. Be sure to point out some of those special qualities that have nothing to do with his autism. This will help your child understand that autism is something that he has, not the sum total of who he is.

Assure your child of support 
Explain to your son why he’s receiving the services he’s getting. For instance, you could tell him that he sees a speech therapist to help him communicate more clearly, or that he’s seeing a behavioral therapist to improve how he makes friends. Help him understand how you, his therapists and his teachers all want to help him. You can point out that we all need some help to become the best we can be. Some children need extra help learning to read. Some get very sad and need help in that department, etc.

Expect to repeat these conversations!
All children – and especially those with autism – need to hear some information multiple times. This doesn’t mean he doesn’t understand. what you’ve told him. Rather, revisiting these topics can be an important part of his processing the information.

Find role models and peers
It’s important for children with autism to spend time with typically developing peers. However, for children your son’s age and older, it can be a wonderful experience to spend time with other children on the autism spectrum. Consider enrolling your son in a play group or social skills group specifically for children with autism.


 

Science, Pseudoscience and Antiscience Theories In Autism

Finding effective treatments for their children with autism is one of the most difficult challenges parents face. In this month’s ASAT feature, Gina Green, PhD, BCBA-D and Lora Perry, MS, BCBA share insights about the many pseudoscience and antiscience theories and claims that are made about treatments for autism, and suggest some questions parents can ask to help them decide which treatments are most likely to help. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Science, Pseudoscience and Antiscience Theories in Autism:
Gina Green, PhD, BCBA-D and Lora Perry, MS, BCBA

The Importance of Informed Treatment Decisions
“Your child has autism.” With those words, a parent’s world comes crashing down. What to do? Choosing a treatment is one of the most important decisions the parents of a person with autism will ever have to make. How do parents find truly effective treatment for their child? In an ideal world, the person who dropped the autism diagnosis on a family would provide the answer. But the unfortunate fact is that many who make this diagnosis are not well informed about the wide array of autism treatments, and the degree to which these treatments have proven effective (or not). So until the day comes when parents can count on data based professional guidance, they will need to become very discerning about the various treatments, therapies, and programs that are claimed to be effective for autism. The same applies to those who are concerned with helping families get effective services. There is a need to do a lot of homework, and to do it quickly. Why the urgency? Because the stakes are high, and every moment is precious.

Pseudoscience and antiscience theories in autism

Children and adults with autism can learn, and there are effective methods for helping them develop useful skills and lead happy, productive lives. At the same time, research has shown that many currently available interventions for autism are ineffective, even harmful, while others have simply not been tested adequately. Every moment spent on one of those therapies instead of effective intervention is a moment lost forever. Besides, common sense suggests that it is wise for parents and professionals alike to invest in interventions that can be reasonably calculated to produce lasting, meaningful benefits for people with autism—that is, interventions that have withstood scientific testing.
As parents and professionals seek information about autism treatments, they discover a long and perplexing list of “options,” many of them promoted by sincere, well-meaning, persuasive people. Everyone claims that their favorite treatment works, and parents and practitioners are often encouraged to try a little bit of everything. This can be very appealing to people who are seeking anything that might help. How does one choose wisely? To quote the late Carl Sagan, “The issue comes down to the quality of the evidence.” So the first step is to find out exactly what evidence is available to support claims about autism treatments. But all evidence is not created equal. How does one sort pure hype from solid proof, wishful thinking from rigorous testing?
Science, Pseudoscience, and Antiscience in Autism
Approaches to answering fundamental questions about how the world works can be grouped into three broad categories: science, pseudoscience, and antiscience. Science uses specific, time-honored tools to put hunches or hypotheses to logical and empirical tests. Some of those tools include operational definitions of the phenomena of interest; direct, accurate, reliable, and objective measurement; controlled experiments; reliance on objective data for drawing conclusions and making predictions; and independent verification of effects.
Science does not take assertions or observations at face value, but seeks proof. Good scientists differentiate opinions, beliefs, and speculations from demonstrated facts; they don’t make claims without supporting objective data.

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Tip of the Week: Your Child’s Autism Diagnosis Long Term

In the years immediately after a parent learns of a diagnosis of autism, it can be especially challenging to think of your child’s autism diagnosis long term. But as parents advocate for their child, and as practitioners work with the family to create goals for that child, the long term must be considered. Your Child's Autism Diagnosis Long TermHere are a few suggestions to help with considering the long term, while focusing on short-term goals:

  • Create a vision statement. One of my favorite books is From Emotions to Advocacy: The Special Education Survival Guide by Pam Wright and Pete Wright. This book covers everything parents need to know about advocating for a child with special needs. One of the first things they suggest is creating a vision statement. They describe this as “a visual picture that describes your child in the future.” While this exercise may be challenging, it can help hone in on what is important to you, your family, and your child with special needs in the long term.
  • Look at your child’s behaviors, then try to imagine what it might look like if your child is still engaging in that behavior in five or ten years. Often, behaviors that are not problematic at three are highly problematic at 8 or 13 years old. Such behaviors might include hugging people unexpectedly or (for boys) dropping their pants all the way to the ground when urinating (which could result in bullying at older ages). While it is easy to prioritize other behaviors ahead of these, it’s important to remember that the longer a child has engaged in a behavior, the more difficult it may be to change.
  • Talk to practitioners who work with older students. Many practitioners only work with a certain age group of children. While they may be an expert for the age group they work with, it may be helpful to speak with a practitioner who works with older kids and ask what skill deficits they often see, what recommendations they may make, and what skills are essential for independence at older ages.
  • Talk with other parents. Speaking with other parents of children with special needs can be hugely beneficial. Over the years, I’ve worked with hundreds of parents who are spending countless hours focusing on providing the best possible outcomes for their children. And while it’s impossible to prepare for everything that will come in your child’s life, it may be helpful to find out what has blindsided other parents as their children with special needs have grown up.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

Is That You On TV?

No, I know.  In all seriousness, it’s Team Braverman from the NBC program “Parenthood”.  One of the show’s main storylines portrays a family whose son is diagnosed with Asperger’s Syndrome.  This image is from the episode where the family participates in an Autism Speaks walk.  The plot revolves around the struggle a family faces when they are deciding how they should tell their child about his or her diagnosis.

I have been hooked on this show for the last few weeks.  I find the way ‘Parenthood’ tackles difficult topics to be touching and feel that it is an realistic account of a family ‘behind the scenes’.  I spend a lot of time with families dealing with many of these same issues and can only imagine being in their shoes.  From where I stand this show seems to be a powerful and accurate portrayal of life with a child with Asperger’s.  However, I’m curious how parents, grandparents and other clinicians are reacting to the program.