Diagnosis & Disclosure: Children and Teens

Diagnosis of a child can be the beginning of a parent’s journey, but often it is not. Parents frequently report to us that they suspected that their child was different quite early on. These suspicions may have been dismissed or attributed to a temporary glitch in a child’s early development, something that the parent was reassured he would “grow out of.” Many parents who come to AANE report that their children had at least one other diagnosis prior to receiving the current one. Some have children or teens with multiple diagnoses. Some parents who come to us are still searching for a diagnosis that makes sense to them. And some feel ambivalent about the idea of “labeling” their child. Regardless of your family’s current situation, AANE has resources to assist you with understanding the diagnostic process and using it as a way of understanding your child better as well as getting her the help she needs.

The issue of disclosure usually comes up soon after a diagnosis is received. Usually parents approach AANE staff with questions about disclosing the diagnosis to their child. They also wonder whether they need to tell family members, educators, or those with whom the child interacts in the community and what they should say about their child’s specific profile and needs. We can help guide you through all of these big decisions and important conversations. Here are a few resources to get you started.

Essential Resources:

What Does This Diagnosis Mean?
Making Sense of the Alphabet Soup of Diagnoses
Parent Coaching
Support Groups
Education
First Person Accounts
Safety: Medical ID Bracelets and Wallet Card

Newly Diagnosed Workshop:

Asperger/Autism 101

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Is it Asperger’s or ADHD?

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It would be much easier for all of us if psychiatric diagnoses fell neatly into one category. And psychiatry would be immeasurably less complicated if we had a “scientific instrument” like an MRI, X-ray or blood test which accurately and consistently assigned people into one or another... more

Disclosure Choices

07/07/2022
Lee el Mensaje de Brenda En Español This month, we are discussing autism and disclosure. Disclosing an autism diagnosis can increase the likelihood that an autistic person will get the accommodations they may need. It can also be a powerful tool to minimize or eliminate the common practice of... more

Diagnosis Discussion Tips for Parents

07/07/2022
Many parents and family members wonder how to talk to their autistic child or teen about their diagnosis. Several variables can impact the decision, such as the child’s age, reason for the evaluation, and whether or not the child needs particular therapies or supports. While each autistic... more

Diagnosing Autism in Adults: Why is it so hard?

01/06/2022
Virginia sat across from me, eyes twinkling, talking with self-awareness and humor about her childhood. “I had no friends. Everyone thought I was weird because I was obsessed with cats. All I wanted to do during recess was play cat games.” Virginia is a 25-year-old woman who suspects she has... more

The Asperger/Autism Network Interview – A New Understanding of Asperger’s and Autism

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It’s Never Too Late

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Many adults discover they relate to the Asperger/autism profile or receive a diagnosis later in life. This can bring much-need clarity to a person's life, but can also contribute to a sense of regret on many levels. AANE's Executive Director Dania Jekel discusses the impact of a later diagnosis... more

Trastorno del Espectro Autista/ Perfil de Asperger, Entendiendo el Diagnostico y Primero

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Raising Your Child on the Autism Spectrum: Introduction to Asperger Syndrome/Autism

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Introduction to Asperger/Autism

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This webinar, designed for families of recently diagnosed children or teens, describes in detail and through real-life examples some of the most common challenges and strengths of Asperger's/Autism. It also includes basic information about parenting strategies and disclosure. It offers "first step"... more

To Tell or Not to Tell

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I cannot count the number of times I have been asked (or heard others asked) whether or not parents should tell their child that he or she has Asperger Syndrome. I will give my opinion in a moment, but first I want to address how this is relative to empowering victims. Tim and Ted are children with Asperger Syndrome, both 14 years old. They... more

So You Think it May be Asperger’s…Now What? Where to Find the Help You Need

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If you have just found out – or if you suspect – that you or someone in your care has Asperger’s Syndrome (AS), you may feel as bewildered as Alice in Wonderland, just after she fell down the rabbit hole! It’s a whole new reality now, and you are probably going to need a guide or two to... more

Disclosure: Two Hands-On Examples

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Many parents know that disclosure—telling others about their child’s Asperger Syndrome—can help the child better understand and accept him or herself, and become a better self-advocate. It can also help others better accept and support the child (or teen or adult). However, many of us wonder: Where should I begin? What should I say—and... more

Asperger/Autism Disclosure Stories

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Adults with Autism and Asperger Syndrome share their stories about disclosing their condition to prospective employers and other concerned parties. For the Asperger/Autism Network Disclosure conference on Saturday, March 14,... more

Disclosure Conference 2015: Disclosure to Your Child Workshop

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Catherine Faherty talks about how to talk to disclose to your... more

How Parent Coaching Helped My Family: Katie Sonin

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Katie shares how parent coaching has helped her... more