You do not need a formal autism diagnosis to access AANE’s support, services, or community. You are the expert on your own experience.
Whether you have received a medical diagnosis or not, AANE is here to support you. Many people make the decision to seek out a formal, medical diagnosis, while others go through their own exploration of self-diagnosis without official testing with a professional.
Know that diagnosis, by its very nature, describes broad generalizations. Here at AANE, regardless of your diagnosis, we recognize your unique experience as an individual.
Seeking an Autism Diagnosis
Barriers to receiving a diagnosis still exist. Individuals seeking a formal diagnosis can wait for months to years for a diagnostic assessment, and costs can be significant. Many professionals who diagnose lack training in neurodiversity-affirming care and are using diagnostic tools that do not take into account varied Autistic experiences. Not only can diagnostic assessments be inadequate in recognizing autism in adults, they can especially fall short for people of color, women, and trans and gender-diverse individuals. Each year, the CDC publishes data outlining in greater detail observed diagnostic differences across race, ethnicity, and gender.
Given the noted equity issues associated with receiving a formal diagnosis, AANE recognizes and honors self-diagnosis. You do not need a formal diagnosis to take part in any AANE program or service. Many within our community report taking an online questionnaire as one of the first steps toward understanding themselves. Online questionnaires can be helpful in building self-understanding.
However, many public and private programs, services, and government agencies do require a formal, medical diagnosis to be eligible for their offerings. An online questionnaire cannot stand in for a formal, medical diagnosis in these situations.
Diagnostic labels can be confusing as the designations can change from year to year, and there is an ongoing debate among professionals and non-professionals regarding diagnostic labels.
“Asperger Syndrome” was a diagnostic term that officially came onto the professional scene in 1994 within the Diagnostic Statistical Manual (DSM) IV, and was subsequently subsumed under the category Autism Spectrum Disorder in the DSM 5.
Other, related diagnostic terms and labels are PDD (Pervasive Developmental Disorder), NLD or NVLD (Nonverbal Learning Disorder), and Social Communication Disorder (SCD).
Processing an Autism Diagnosis
Individuals within our community describe varied responses to receiving a medical diagnosis. A medical diagnosis may validate past experiences, provide a framework for understanding yourself, and give you access to resources and services that require participants to have received a medical diagnosis. Some report relief upon receiving a medical diagnosis, affirming their long held self-understanding, and giving them a framework for building their future.
Receiving a diagnosis can also lead to feelings of frustration, anger, and resentment. Members of our community who receive a diagnosis later in life report years of invalidation by professionals and loved ones and that they wished they had known this earlier. Had they had this information sooner, they might have found community and support when they needed it, and avoided some of the harm that came from years of being misunderstood and mistreated. For some, receiving a formal diagnosis does not match their understanding of themselves, can bring up fears of discrimination, bullying, and ostracization, and may be an unwelcome experience given the continued stigma associated with autism.
Parents and caregivers of young children are often their child’s first advocates and may get curious about whether their child may be Autistic. Some may not consider this until their child is in their teens or older. For some parents and caregivers, their curiosity about a possible autism diagnosis can be dismissed by professionals. Parents and caregivers have heard “they’ll grow out of it,” feeling disempowered and invalidated. Many who come to AANE describe their child as having received one or more diagnoses before receiving an autism diagnosis, and for others, their child may have received an autism diagnosis as well as one or more mental health diagnoses. Some parents and caregivers come to us still searching for a diagnosis that fits.
AANE has made the decision to use the terms “autism” and “Autistic” in our communications moving forward. Many people continue to refer to themselves and their loved ones using the terms “Asperger’s,” “Aspie,” and other similar words. AANE respects each individual’s decision to use the language that best describes them and their loved ones.
Wherever you are on your journey, we are here for you. AANE has resources to assist you with understanding the diagnostic process and using it as a way of understanding yourself and accessing the support and community needed to thrive.
Diagnosing Autism in Adults: Why is it so hard?
"In the report from that evaluation, I read that her previous clinician had found her much too engaging, self-aware, and articulate to be Autistic."
Success: Creating a Life You Don't Need a Vacation From
"At the ripe old age of thirty-six, I was diagnosed Autistic. It was a gorgeous, sunny, spring afternoon in May when my life changed forever."
It's Never Too Late
"Newly realizing one’s neurology, even as an older adult, can be transformative."
I Think My Parent is Neurodivergent
"I think it is helpful to understand why the parenting style of an Autistic person may appear different from neurotypical parents."
For Families and Caregivers
Though parents and caregivers might be curious about an autism diagnosis before their child, at times children and teens may notice they have differences in the way they process information and communicate compared to their peers. Whether a child or teen is looking for support in learning more about those differences, or you are a caregiver exploring information about neurodiversity and pursing a medical diagnosis, you can learn more here through professional and personal experiences.
The Why and How of Diagnosis for Children & Teens
"While some parents want an answer about whether or not their child or teen is Autistic, others may not be pursuing a specific diagnosis."
Diagnosis Discussion Tips for Parents
"Many parents and family members wonder how to talk to their Autistic child or teen about their diagnosis."
Autism & Parenting While Black
"I learned to ask questions. Each of my children’s diagnoses came at different times and in different ways, but for my daughters it felt especially slow. Research mirrors this pattern of invisibility for Black autistic girls."
Early Identification Process
"The early identification process for young children involves recognizing potential signs and behaviors that could indicate that a child is Autistic during the early developmental stages."
Free Must-Watch Webinar
2023 Update: How to Find Public Benefits for Autistic Adults in Any State
This free webinar teaches Autistic adults in any state how to find public federal and state support programs that provide free or low-cost services to help them reach their immediate and longer-term needs and goals. Eligibility requirements and availability of these services vary significantly by state.
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