Diagnosis and Disclosure

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
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Introduction to Asperger/Autism

Webinar
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" help for parents as they begin their journeys as... more

To Tell or Not to Tell

Article
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

Is it Asperger’s or ADHD?

Article
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 diagnosis. If we only had such a lens, one of the first... more

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

Article
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 find your way around this new world. You may feel... more

Disclosure: Two Hands-On Examples

Article
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

Video
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

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

How Parent Coaching Helped My Family: Katie Sonin

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

How Parent Coaching Helped My Family: Ross Kramer

Video
Ross Kramer talks about his experience with parent... more

AANE Disclosure Conference 2015: Afternoon Keynote

Webinar
Gina and Kate Gallagher share their experience with... more

Parallel Play Book Talk

Video
Tim Page, author of Parallel Play, discusses growing up with Asperger Syndrome and making his way in the... more

Perspectives on Adult Life: Adult Panel Discusses Living with AS/ASD (Part 4 of 4)

Video
Adults share their experiences of growing up and living with Asperger profiles.Part 1 Part 2 Part 3 Part 4 (This... more

Perspectives on Adult Life: Adult Panel Discusses Living with AS/ASD (Part 1 of 4)

Video
Adults share their experiences of growing up and living with Asperger profiles.Part 1 (This Video) Part 2 Part 3 Part... more

Perspectives on Adult Life: Adult Panel Discusses Living with AS/ASD (Part 2 of 4)

Video
Adults share their experiences of growing up and living with Asperger profiles.Part 1 Part 2 (This Video) Part 3 Part... more

Aspertools: The Practical Guide for Understanding and Embracing Asperger’s ASD & Neurodiversity

Webinar
Harold Reitman, MD, author of Aspertools discusses what it means to be... more

Perspectives on Adult Life: An Adult Panel Discusses Living with AS/ASD (Part 3 of 4)

Video
Adults share their experiences of growing up and living with Asperger profiles.Part 1 Part 2 Part 3 (This Video) Part... more

Fewer Meltdowns! Practical Strategies for Fostering Positive Behavior in Children & Teens with AS

Webinar
Brenda Dater, author of Parenting without Panic, shares practical strategies for fewer... more

Parenting without Panic with Brenda Dater

Webinar
Brenda Dater, author of Parenting without Panic, shares practical guidance for parents of children and teens on the autism spectrum; helping all parents feel less... more

Neurotribes: The Legacy of Autism and the Future of Neurodiversity

Recommended Reading
The future of our society depends on our understanding autism. WIRED reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has... more

Life, Animated

Recommended Reading
This is the real-life story of Owen Suskind, the son of the Pulitzer Prize-winning journalist Ron Suskind and his wife, Cornelia. An autistic boy who couldn't speak for years, Owen memorized dozens of Disney movies, turned them into a language to express love and loss, kinship, brotherhood.The... more

The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome

Recommended Reading
This personal memoir has touched many hearts, and helped many couples come together to co-parent their children with Asperger profiles.Learn More and... more

Asperger’s Syndrome: An Owner’s Manual–What You, Your Parents and Your Teachers Need to Know: An…

Recommended Reading
Experienced educator Ellen Korin created this workbook at the request of one of her middle school students, who wanted a tool for remembering the content of their important discussions. The result is a very flexible and effective tool that educators or therapists can use with teens with Asperger... more

Asperger’s and Self-Esteem: Hope Through Famous Role Models

Recommended Reading
Not every person with an Asperger profile is an Einstein--but it can be comforting and inspiring to know that Einstein, Mozart, Gregor Mendel, Mme. Curie, and others had some of the same struggles--and managed to make huge contributions to humankind.Learn More and... more

Love That Boy: What Two Presidents, Eight Road Trips and My Son Taught Me About…

Recommended Reading
LOVE THAT BOY is a uniquely personal story about the causes and costs of outsized parental expectations. What we want for our children—popularity, normalcy, achievement, genius—and what they truly need—grit, empathy, character—are explored by National Journal’s Ron Fournier, who weaves... more

Living Sensationally

Recommended Reading
Winnie Dunn has worked with many people with Asperger profiles. Based on her deep understanding of how their sensory issues impact their experience and functioning, she offers strategies to creating more hospitable environments and practical solutions. The book is refreshingly concise, with handy... more

Asperger Profiles: Emotions and Empathy

Article
People with Asperger profiles absolutely do have feelings, although they may have difficulty identifying and discussing them. In fact, many feelings – such as fear, anger and joy – seem to be experienced more intensely by those with Asperger profiles than by average people. In addition, some... more

Asperger Profiles: Environmental Influences

Article
There is some suggestion that environmental factors play a part in influencing certain characteristics of Asperger profiles, or may even affect the expression of genes. The emerging field of epigenetics, the study of the ways in which physiology can be shaped by external factors, might shed more light on this topic moving forward. We do know that... more

Disclosure in College

Article
Scott was one of two student panelists at AANE's spring 2012 "Perspectives on College Life" program.My name is Scott Finkelstein and I just graduated from Brandeis University. I actually finished a semester early and am currently looking for a job (in case any of you are hiring…), but I will walk with the class of 2012 in the spring.One... more

Asperger Profiles: Cultural Influences

Article
We live in a rapidly changing society that can be more hospitable to some people than to others. The rate of social and cultural change in and of itself can be overwhelming to those who typically struggle with transitions. Many people with an Asperger profile can easily feel over-stimulated by lights, sounds, and textures. In an increasingly... more

Considering the Needs of Siblings of Individuals With Asperger Profiles

Article
It is important that families of children with Asperger profiles also consider the special needs of the neurotypical (NT) siblings of these children. The good news is that studies comparing “typical” siblings of children with special needs to matched siblings have found the first group to have no greater chance of having psychological problems... more

FAMILY: Make Way for a New Definition

Article
 “Plant a radish, get a radish, never any doubt. That’s why I like vegetables; you know what they’re about.”Words by Tom Jones from The FantastiksCommonly Shared Family Expectations1.       Children will eat what is served.2.       Dinner is eaten as a family.3.       Families take vacations... more

Asperger Profiles: Genetics

Article
Nobody knows for sure what causes an Asperger profile. Current research indicates that there is a genetic foundation for this constellation of traits, involving a number of different genes. So it is not surprising that when a person receives an Asperger/ASD diagnosis, the family often realizes that... more

Guidelines for Neuropsychological Evaluations for Children and Teens

Article
To most parents hearing it for the first time, the term “neuropsych eval” is mysterious, a phrase that never comes up in toddler music classes, playground chat, or the mainstream parenting manuals. Parents facing the possibility that their child has developmental problems, however, must quickly become accustomed to it, because the... more

Helping Students with Asperger Profiles Make Sense Of Recess

Article
When “typical” children are asked: “What’s your favorite class at school?” many will say “Recess!” Most children love recess. They are in charge. Freed from arbitrary adult rules, they get to play and run around, burn off energy etc.Children with Asperger Profiles, however, may have another perspective. For them, recess is... more

Don’t Forget to Invite the Student! Including Students with Asperger Profiles in Meetings

Article
According to the National Dissemination Center for Children with Disabilities, “to write an effective IEP for a child with a disability, parents, teachers, other school staff—and often the child— must come together at a meeting to look closely at the child’s unique needs.” As noted in Bonnie Glickman’s article, students are legally... more

It’s Not a Secret: Why Disclosure is Important

Article
In the general culture of the United States the hidden meaning of the word secret is shame, something bad that shouldn’t be discussed. When someone wants to keep “good” information private, it is more likely to be called a surprise. Having an Asperger profile is not, and never should be something shameful or embarrassing in and of itself. If... more

Asperger Profiles: Language and Communication

Article
Many people with Asperger profiles have complex vocabularies and sophisticated speech, but using language to communicate, also called pragmatics, is a different matter. The rules of everyday conversation that come intuitively to most people have to be actively learned by individuals with Asperger profiles. Difficulties arise in two spheres. First,... more

Living In Oz: One Parent’s Story

Article
Hello. My name is Kirsten Root and I have two sons with Asperger Syndrome. My 4 y.o. was diagnosed about a year ago and my 3 y.o. was diagnosed four days ago. I am very new to the world of Asperger Syndrome, so today I wanted to talk about how I am making sense of it all. The first thing I have learned is that I can’t use figures of speech or... more

Neurodiversity

Article
Diagnostic labels, by nature, define disorders and tend to ignore the strengths, gifts, and adaptive benefits of the individuals diagnosed. In contrast to this, the Asperger constellation of traits has more recently been described as the product of natural variations in human neurology that lead to differences in individual experiences,... more

Sensory Processing and the Sensory Budget

Article
How do we know anything at all about the world? Our sensory system is responsible for accurately taking in information so our brain can interpret this information and then do something with it. For everyone, this process happens instantaneously and continuously throughout the day: “I see red, I see round, I hear bouncing, I smell... more

Asperger Profiles: Common Characteristics

Article
As we look in detail at some strengths and challenges you might see in a person with an Asperger profile, keep in mind that people with these profiles are not all alike; they may differ from one another even more in respect to their areas of strength than in their areas of challenge.Possible Asperger StrengthsCommon Asperger... more

Asperger Profiles: Developmental Delays

Article
Every person with Asperger Syndrome is developmentally delayed, not intellectually, but at the social-emotional level. This delay can be significant; for example, a 21-year-old may seem socially and emotionally more like a 14-year-old. The social consequences of being developmentally delayed often become particularly conspicuous during the middle... more

Asperger Profiles: Successful Adults

Article
People with Asperger profiles can and are successful writers, doctors, artists, professors, scientists, therapists, and executives among many other careers. Because the diagnosis is relatively new, few living high-profile adults have disclosed their own Asperger diagnoses. Among those who have disclosed their diagnoses include comedian Dan Aykroyd... more

Reflections About College

Article
Beginning college is a big step for most kids, and can be even tougher for young people with Asperger’s. If you choose to live on-campus, it means leaving your family and your home and moving into a dorm room with one or more total strangers. College students don’t have to take nearly as many classes as high school students, but the workload... more

Teaching Resilience to Children with Asperger Profiles

Article
Perhaps you, too, have had this experience. A child—let’s call him Joey—is in the middle of a meltdown, and a well-intentioned adult advises him to take some deep breaths. (Perhaps you have even been that adult.) There’s just one problem—the child has never had any prior instruction in deep breathing, or any opportunity to rehearse using... more

Asperger Profiles: Prevalence

Article
No one knows how prevalent an Asperger profile is. Some professionals currently surmise that at least one in every 250 people has an Asperger profile. The statistics continue to shift. In the late 1990’s, the National Institute of Child Health and Mental Development estimated that 1 in 500 people had some form of AS. As the number of individuals... more

Asperger Profiles: Understanding Strengths and Challenges

Article
When parenting, teaching, befriending, treating, working alongside, or supervising someone with an Asperger profile:Consider both the person’s challenges and his or her strengths. Balance acceptance with teaching necessary skills. Strengths-based interventions foster hope, inspiration, and energy. People with Asperger profiles... more

Asperger Profiles: Mental Health

Article
Many children and adults with Asperger profiles experience anxiety, depression, and other mental health symptoms. An Asperger profile is a neurological difference, meaning that it influences the way that one perceives and processes information and experiences. Sometimes this can cause emotional and mental distress or sometimes a person with an... more

Asperger Profiles: What We Know

Article
Because of the ways in which they tend to differ from the norm, many people with an Asperger profile report having been bullied and/or excluded from groups, both as children and as adults. This history of rejection can impact Asperger individuals’ ability to trust others; they might be more cautious and emotionally guarded around certain people... more

Throw Away The Yardstick or The Blessing of the Diagnosis

Article
Many of us started this journey through the now famous metaphor of visiting Holland. If you haven’t read Emily Perl Kingsley’s brilliant essay on having a child with special needs, read it here. In it, she compares getting ready to have a baby to planning a trip to Italy—only expectant parents could think of parenting as a trip to one of... more

Dear Grandma and Grandpa, I’m Not a Bad Kid

Article
Dear Grandma and Grandpa,I know you think I'm rude sometimes. The last time you tried to take me to the movies I screamed and put my hands over my ears because it was too loud and you got mad at me and said I ruined the movie for my little sister. Afterwards, when I was pacing in the back of the restaurant, you told me I needed to sit down... more

Asperger Syndrome and Bullying: Strategies and Solutions

Recommended Reading
Bullying is a serious problem for people with Asperger profiles, both at school and in the workplace. Displaying "different" behavior, such as not understanding social rules or hand-flapping, exacerbates the risk of being victimized. Nick Dubin describes the bullying behavior he and others have... more

Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World

Recommended Reading
Teresa Bolick is an experienced and trusted child psychologist who has shared her wisdom with the AANE community at many of our conferences. In this book she presents strategies for helping the ten to eighteen­-year-­old achieve happiness and success by maximizing the benefits of Asperger... more

Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum

Recommended Reading
Edited by Stephen Shore, Ask and Tell aims to help autistic people effectively self-advocate in their pursuit of independent, productive, and fulfilling lives. Ask and Tell is unique by being the first book to speak to the twin issues of self-advocacy and disclosure for people on the... more

Parenting without Panic: A Pocket Support Group for Parents of Children and Teens on the…

Recommended Reading
Ever wish that parenting a child or teen on the autism spectrum came with instant access to a support group? Brenda Dater has provided parents with exactly that. In this book she draws on her extensive experience as a support group leader and parent of a child on the spectrum to offer trusted... more

Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to…

Recommended Reading
At some point in nearly every marriage, a wife finds herself asking, What the @#!% is wrong with my husband?! In David Finch’s case, this turns out to be an apt question. Five years after he married Kristen, the love of his life, they learn that he has Asperger syndrome. The diagnosis explains... more

Walk a Mile in Our Shoes

Article
Sometimes parents of children with Asperger Syndrome (AS) have the good fortune to encounter someone who really listens to our concerns, offers us emotional support or concrete help, or understands and appreciates our children. We are deeply grateful when we encounter one of these wonderful people, and never forget their kindness.All too... more

Welcome To Holland

Article
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make... more

Don’t Mourn for Us

Article
This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents. Parents often report that learning their child is autistic was the most... more

Asperger Profiles: Is There a Cure?

Article
There is no cure for an Asperger profile as it is not a disease; in fact, many people are concerned that anyone would suggest that their essential nature should be “cured.” That said, many of the more challenging aspects of living with an Asperger profile can be reduced, and the positive attributes can be supported and nurtured. Over time,... more

Background of Asperger Syndrome/Autism Spectrum Disorder Diagnoses

Article
Asperger Syndrome (AS) is a diagnostic term that officially came onto the professional scene in 1994 within the Diagnostic Statistical Manual (DSM) IV [and subsequently subsumed under the category Autism Spectrum Disorder (ASD) in the DSM 5]. AS is defined as a neurological condition, meaning that people who have AS are born with it, and have it... more

Asperger Profiles: The Big Picture – Strengths

Article
People with Asperger profiles present with a complex and at times perplexing combination of strengths and challenges.Asperger brains process some kinds of information better than the brains of neurotypical people. Dr. Hans Asperger (1906-1980) said: “It seems that for success in science or art, a dash of autism is essential.” ... more

Asperger Profiles: The Big Picture-Challenges

Article
While respecting the abilities and humanity of people with Asperger profiles, one should not underestimate their struggles and suffering they might endure. A society designed for and dominated by the neurotypical majority can feel uncongenial and even overwhelming for a person with an Asperger... more

Asperger Profiles: Invisibility

Article
It is important to understand and respect that someone with perceptual differences might need support while navigating a social landscape and culture predominantly shaped by neurotypical influences; their challenges may not be obvious to others. The gap between intellectual ability and functional presentation complicates the Asperger experience... more

An Approach to Transition Assessment and Planning

Article
Defining Transition Generally speaking, transition is defined as the movement from one set of activities to another, but for the families of adolescents and young adults with special needs it has a more specific meaning. In this context, “transition” refers to the complex process of moving from or one life stage to another: from adolescence... more

Dear Parents of Typical Kids

Article
Dear parents of typical kids, I could have been labeled a helicopter parent for my oldest son, who was diagnosed with Asperger’s when he was 3 years old. When he started middle school 8 years ago, I tried to arrange for neighborhood kids to walk or bike to and from school together. I knew that other parents were not making plans for their kids.... more

How Parent Coaching Helped Me

Video
Katie shares how parent coaching has helped her family. Sign up for Parent Coaching... more