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Have you been denied assistance because your autism diagnosis was missed in childhood? If so, you're not alone. In this post, Dr. Regan provides you with new information from the Center for Disease Control (CDC) that will empower you to advocate for your needs.
MOST ADULTS WITH AUTISM ARE UNDIAGNOSED OR MISDIAGNOSED
The belief that autism is a diagnosis reliably made in childhood is one of the most unyielding myths about the spectrum. Although gains in the understanding and detection of autism have evolved over the last few decades, we are far from having a perfect diagnostic system. Many children fall through the cracks and are left undiagnosed or misdiagnosed as adults.
One of the most devastating impacts of this myth has been the formation of public and legal policies stating that, if pediatric records have not documented the condition, a diagnosis in adulthood is not recognized as vaid. Consequently, the individual is ineligible for autism support services in the community.
The conceptualization of autism as a pediatric condition is also perpetuated a significant lack of research in adult populations. The scientific void has created the perfect environment for inappropriate policies to remain in place without challenge.
EMERGING DATA TO SHIFT POLICY
The near absence of research on autism in adulthood includes measurement of its prevalence across the lifespan. Croen et al. (2015) provided a peek at existing diagnostic rates in adults. The researchers searched the Kaiser Permanente medical database for existing diagnoses in the records of over 3-million patients. Only 0.1% of the patients had an existing diagnosis of autism in the medical record.
Although a large-scale study in the United Kingdom (Brugha, 2011) documented that many adults are missing a correct diagnosis on the spectrum, no regional studies have addressed this topic in the United States.
NEW CDC STATEMENT
The new CDC publication documents an estimated autism prevalence rate of 2.2% within the United States. This number stands in stark contrast to Croen's finding of 0.1% of adults with an established diagnoses.
The recent CDC publication further states, "ASD is a lifelong condition, and many adults with ASD need ongoing services and supports. The findings from this study can help states determine the need for diagnosing and providing services to adults in the United States who remain unidentified with ASD."
The CDC's recent statement may be the first step in a journey to legitimize an adult diagnosis within science, policy, and law.
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If you have been denied services or supports for autism because you missed a diagnosis in childhood, head to Dr. Regan's website and click on MEMBER CONTENT. Registering as a member is free! Within the members' section, scroll to the "Downloadable Resources" block and click ACCESS HERE. You will find a free 5-page downloadable PDF created by Dr. Regan. The document includes information from eight research studies, as well as quotes from the diagnostic manual that support the legitimacy of an autism diagnosis in adulthood.
Dietz PM, Rose CE, McArthur D, Maenner M. National and State Estimates of Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 2020 [epub ahead of print].
thank you - your so amazingly helpful. 😊
if we extrapolate the statics about autism posted by the CDC we come up with over 5 million adults in the USA alone with autism, most of whom will be undiagnosed due to unavailability when we were children. I was 30 when kids were first being diagnosed as autistic. Science has come such a long way. I feel so encouraged that soon other adults will be able to unlock the understanding to help their lifelong struggles and pains and finally have the relief of knowing "why" and the ability to make self accommodations with insight as self understanding grows. <3
this information is sorely needed, and new diagnosing professionals are desperately needed right now. As the baby boomers are soon to all be over age 65 so many services are going to be needed almost immediately. I hope the things taught in todays classrooms for diagnosing professionals include the most recent discoveries of autism in adults. A person in school today could do no greater service , nor be assured of continual demand and professional growth than to choose and autism specialty for adults /geriatrics/ gerontology.
If only we all could find discover our diagnosis earlier, life may have been less of a struggle at times. However, finding out my diagnosis at age 66 and with the help of a therapist who specializes in ASD, I am looking at my life through the lens of ASD and discovering profound understanding and forgiveness.
Thank you, This article is very helpful and means a lot.