Table of ContentsView AllTable of ContentsAcademic PerformanceEarly MisdiagnosisChanges in CriteriaSex DisparitiesSocioeconomic FactorsIs a Late Diagnosis Worth It?
Table of ContentsView All
View All
Table of Contents
Academic Performance
Early Misdiagnosis
Changes in Criteria
Sex Disparities
Socioeconomic Factors
Is a Late Diagnosis Worth It?
The late diagnosis ofautism spectrum disorder (ASD)is not uncommon given the wide variation ofautism symptoms. ASD can be missed if a person doesn’t have behaviors or traits that are immediately recognized asneurodivergent(different than others) or is able to mask those behaviors and appearneurotypical(the same as everyone else).
Some autistic people are able to communicate verbally, get along with neurotypical peers, and have socially appropriate interests and interactions. It is only in later life when responsibilities and relationships become more complicated that ASD traits may be “unmasked.”
This article lists five reasons why some autistic people remain undiagnosed or are only diagnosed at a later age.
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Many autistic children who aren’t diagnosed often display average or excellent performance in school. Because of this, their autism will go unnoticed, causing parents and teachers to search for other explanations for behaviors that seem unusual or problematic.
Even experienced pediatricians can miss the diagnosis when a young child is communicating verbally and reaching the expecteddevelopmental milestones. In some cases, a child’s scholastic strengths can carry them through elementary school with only minor behavioral or social concerns.
However, as schoolwork becomes more abstract and demanding in middle school or high school, a child may start to exhibit classic signs of ASD—such asrocking,lack of eye contact, andobsessive behaviors—that some might misconstrue as anxiety or signs of social maladjustment.
As schoolwork and social interactions get more complicated, autistic people may engage in more intense self-regulatory behaviors likestimming(repetitive or unusual body movements or noises) orecholalia(meaningless repetition of words) to help calm and soothe themselves.
Some will only show signs during adulthood after a major life change, such as graduating college, starting a job, or having children.
Early Misdiagnoses
The older and older the child gets, the less likely that autism will be diagnosed simply because they don’t fit the classic profile of ASD.
According to a 2019 study in the journalAutism,10.3% of autistic adults were incorrectly diagnosed with ADHD as children, while 12.1% of children initially diagnosed with ADHD were subsequently diagnosed with autism.
Signs of Autism in AdultsAutism traits in adults include:Anxiety over social situationsAppearing blunt, rude, or disinterested without meaning toAvoiding eye contactDifficulty making friendsDifficulty understanding what others are thinking or feelingFinding it hard to say how you feelHaving a very keen interest in very specific subjectsMaintaining strict routines and being anxious if they changeNot understanding social rulesNoticing patterns, smells, or sounds that others do notPreferring to be aloneTaking things literally
Signs of Autism in Adults
Autism traits in adults include:Anxiety over social situationsAppearing blunt, rude, or disinterested without meaning toAvoiding eye contactDifficulty making friendsDifficulty understanding what others are thinking or feelingFinding it hard to say how you feelHaving a very keen interest in very specific subjectsMaintaining strict routines and being anxious if they changeNot understanding social rulesNoticing patterns, smells, or sounds that others do notPreferring to be aloneTaking things literally
Autism traits in adults include:
Another reason for a missed diagnosis is that a person may have been born before the definition was revised in theDiagnostic and Statistical Manual of Mental Health Disorders, Fifth Edition(DSM-5).
Prior to the release of the DSM-5 in 2013, subtypes of autism such asAsperger’s syndromeandpervasive development disorder-not otherwise specified (PDD-NOS)existed. With the release of the DSM-5, those sub-classifications were dropped and autism was described as a broad range (spectrum) of traits and behaviors.
The change in definition led some children to fall out of care when their diagnosed condition was no longer considered “real.” It is only in later years that a person might seek a new diagnosis when ASD traits start to negatively impact their life.
Studies have shown thatautistic femalesare four times less likely to be diagnosed than autistic males. While sex and gender bias plays a major role in this disparity, there are other factors that contribute.
A 2015 study inMolecular Autismsuggests that females may be genetically “immune” to some of the challenges of ASD—a concept referred to as the “female protective effect.” For reasons unknown, autistic females tend to have better functional social behaviors than males.
At the same time, it may be that certain ASD traits may be more “problematic” in males than females. For instance, difficulties with motor coordination might raise a red flag in males who play sports but be entirely missed in females who are often assigned different social roles and expectations.
The same may occur if a male is seen to be shy and non-communicative as opposed to females, who are expected in many cultures to be shy and reticent.
Income and race affect almost every aspect of healthcare in the United States, and ASD is no exception. Children of color, especially Black children, are more likely to be misdiagnosed or diagnosed with autism later in life due tosystemic racial biases.
Because of this, Black, Latinx, or Asian children are less likely to be diagnosed with ASD than White children, according to a 2021 study in theJournal of Developmental and Behavioral Pediatrics.
Of the over 260,000 autistic children included in the study. one-quarter were diagnosed—the vast majority of whom were Black or Latinx. Statistically, Black children with autism were 2.6 times more likely to be undiagnosed than White children.
Cultural misperceptions also contribute to the disparity. One study found that Black parents of children with ASD expressed fewer concerns about repetitive and social behaviors than White parents. A lack of awareness about autism is thought to play a central role.
Barriers in language also contribute to lower rates of diagnosis in Latinx and Asian communities.
Health Disparities: What They Mean and Examples
While there are benefits to diagnosing autism at any age, there are also barriers that can make diagnoses challenging. The hardest part may be convincing your healthcare provider to even start the process.
According to a 2017 study in theJournal of Autism and Developmental Disorders, the main reason that autistic adults delay seeking a diagnosis is because they fear their providers will not believe them. The cost of treatment, stigma, and the inability to explain their symptoms are also significant barriers.
Even so, the benefits of a diagnosis tend to outweigh the consequences. Many adults find that a formal diagnosis brings a sense of relief and confirmation that there are legitimate reasons for their issues.
It also allows them to connect with services and support that can help them better cope with certain challenges. This includes accessing treatments like:
Summary
Many autistic people are misdiagnosed or go undiagnosed until a later age. Among the reasons for this are changes in autism definitions, gender bias, racial bias, and unequal healthcare access.
Older autistic children and adults are often able to mask their symptoms. It is only later in life when responsibilities and relationships become more complicated that a person might exhibit overt signs of ASD.
12 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Kentrou V, De Veld DM, Mataw KJ, et al.Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder.Autism. 2019;23(4):1065-72. doi:10.1177/1362361318785171Interagency Autism Coordinating Committee.Report to Congress on activities related to autism spectrum disorder and other developmental disabilities FY 2014 - FY 2018.National Health Service (UK).Signs of autism in adults.Barahona-Corrêa JB, Filipe CN.A concise history of Asperger syndrome: The short reign of a troublesome diagnosis.Front Psychol. 2016;6:2024. doi:10.3389/fpsyg.2015.02024Mazzone L, Ruta L, Reale L.Psychiatric comorbidities in Asperger syndrome and high functioning autism: Diagnostic challenges.Ann Gen Psychiatry. 2012;11(1):16. doi:10.1186/1744-859X-11-16Halladay AK, Bishop S, Constantino JN, et al.Sex and gender differences in autism spectrum disorder: Summarizing evidence gaps and identifying emerging areas of priority.Mol Autism.2015;6:36. doi:10.1186/s13229-015-0019-yAylward BS, Gal-Szabo DE, Taraman S.Racial, ethnic, and sociodemographic disparities in diagnosis of children with autism apectrum disorder.J Dev Behav Pediatr.2021 Oct-Nov;42(8):682–9. doi:10.1097/DBP.0000000000000996Donohue MR, Childs AW, Richards M, et al.Race influences parent report of concerns about symptoms of autism spectrum disorder.Autism. 2019;23:100–11. doi:10.1177/1362361317722030Lewis LF.A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults.J Autism Dev Disord.2017 Aug;47(8):2410-2424. doi:10.1007/s10803-017-3168-3Yu Q, Li E, Li L, Liang W.Efficacy of interventions based on applied behavior analysis for autism spectrum disorder: a meta-analysis.Psychiatry Investig.2020 May;17(5):432–443. doi:10.30773/pi.2019.0229Roth ME, Gillis JM, DiGennaro Reed FD. DiGennaro Reed.A meta-analysis of behavioral interventions for adolescents and adults with autism spectrum disorders.J Behav Educ.2014;23:258–286. doi:10.1007/s10864-013-9189-xNational Institutes of Health.Medication treatment for autism.Additional ReadingLai MC, Baron-Cohen S.Identifying the lost generation of adults with autism spectrum conditions.Lancet Psychiatry.2015;2(11):1013-27. doi:10.1016/S2215-0366(15)00277-1Mandy W, Clarke K, McKenner M, et al.Assessing autism in adults: An evaluation of the developmental, dimensional and diagnostic interview-adult version (3Di-adult).J Autism Dev Disord. 2017;48(2):549-60. doi:10.1177/0269881117741766
12 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Kentrou V, De Veld DM, Mataw KJ, et al.Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder.Autism. 2019;23(4):1065-72. doi:10.1177/1362361318785171Interagency Autism Coordinating Committee.Report to Congress on activities related to autism spectrum disorder and other developmental disabilities FY 2014 - FY 2018.National Health Service (UK).Signs of autism in adults.Barahona-Corrêa JB, Filipe CN.A concise history of Asperger syndrome: The short reign of a troublesome diagnosis.Front Psychol. 2016;6:2024. doi:10.3389/fpsyg.2015.02024Mazzone L, Ruta L, Reale L.Psychiatric comorbidities in Asperger syndrome and high functioning autism: Diagnostic challenges.Ann Gen Psychiatry. 2012;11(1):16. doi:10.1186/1744-859X-11-16Halladay AK, Bishop S, Constantino JN, et al.Sex and gender differences in autism spectrum disorder: Summarizing evidence gaps and identifying emerging areas of priority.Mol Autism.2015;6:36. doi:10.1186/s13229-015-0019-yAylward BS, Gal-Szabo DE, Taraman S.Racial, ethnic, and sociodemographic disparities in diagnosis of children with autism apectrum disorder.J Dev Behav Pediatr.2021 Oct-Nov;42(8):682–9. doi:10.1097/DBP.0000000000000996Donohue MR, Childs AW, Richards M, et al.Race influences parent report of concerns about symptoms of autism spectrum disorder.Autism. 2019;23:100–11. doi:10.1177/1362361317722030Lewis LF.A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults.J Autism Dev Disord.2017 Aug;47(8):2410-2424. doi:10.1007/s10803-017-3168-3Yu Q, Li E, Li L, Liang W.Efficacy of interventions based on applied behavior analysis for autism spectrum disorder: a meta-analysis.Psychiatry Investig.2020 May;17(5):432–443. doi:10.30773/pi.2019.0229Roth ME, Gillis JM, DiGennaro Reed FD. DiGennaro Reed.A meta-analysis of behavioral interventions for adolescents and adults with autism spectrum disorders.J Behav Educ.2014;23:258–286. doi:10.1007/s10864-013-9189-xNational Institutes of Health.Medication treatment for autism.Additional ReadingLai MC, Baron-Cohen S.Identifying the lost generation of adults with autism spectrum conditions.Lancet Psychiatry.2015;2(11):1013-27. doi:10.1016/S2215-0366(15)00277-1Mandy W, Clarke K, McKenner M, et al.Assessing autism in adults: An evaluation of the developmental, dimensional and diagnostic interview-adult version (3Di-adult).J Autism Dev Disord. 2017;48(2):549-60. doi:10.1177/0269881117741766
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Kentrou V, De Veld DM, Mataw KJ, et al.Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder.Autism. 2019;23(4):1065-72. doi:10.1177/1362361318785171Interagency Autism Coordinating Committee.Report to Congress on activities related to autism spectrum disorder and other developmental disabilities FY 2014 - FY 2018.National Health Service (UK).Signs of autism in adults.Barahona-Corrêa JB, Filipe CN.A concise history of Asperger syndrome: The short reign of a troublesome diagnosis.Front Psychol. 2016;6:2024. doi:10.3389/fpsyg.2015.02024Mazzone L, Ruta L, Reale L.Psychiatric comorbidities in Asperger syndrome and high functioning autism: Diagnostic challenges.Ann Gen Psychiatry. 2012;11(1):16. doi:10.1186/1744-859X-11-16Halladay AK, Bishop S, Constantino JN, et al.Sex and gender differences in autism spectrum disorder: Summarizing evidence gaps and identifying emerging areas of priority.Mol Autism.2015;6:36. doi:10.1186/s13229-015-0019-yAylward BS, Gal-Szabo DE, Taraman S.Racial, ethnic, and sociodemographic disparities in diagnosis of children with autism apectrum disorder.J Dev Behav Pediatr.2021 Oct-Nov;42(8):682–9. doi:10.1097/DBP.0000000000000996Donohue MR, Childs AW, Richards M, et al.Race influences parent report of concerns about symptoms of autism spectrum disorder.Autism. 2019;23:100–11. doi:10.1177/1362361317722030Lewis LF.A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults.J Autism Dev Disord.2017 Aug;47(8):2410-2424. doi:10.1007/s10803-017-3168-3Yu Q, Li E, Li L, Liang W.Efficacy of interventions based on applied behavior analysis for autism spectrum disorder: a meta-analysis.Psychiatry Investig.2020 May;17(5):432–443. doi:10.30773/pi.2019.0229Roth ME, Gillis JM, DiGennaro Reed FD. DiGennaro Reed.A meta-analysis of behavioral interventions for adolescents and adults with autism spectrum disorders.J Behav Educ.2014;23:258–286. doi:10.1007/s10864-013-9189-xNational Institutes of Health.Medication treatment for autism.
Kentrou V, De Veld DM, Mataw KJ, et al.Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder.Autism. 2019;23(4):1065-72. doi:10.1177/1362361318785171
Interagency Autism Coordinating Committee.Report to Congress on activities related to autism spectrum disorder and other developmental disabilities FY 2014 - FY 2018.
National Health Service (UK).Signs of autism in adults.
Barahona-Corrêa JB, Filipe CN.A concise history of Asperger syndrome: The short reign of a troublesome diagnosis.Front Psychol. 2016;6:2024. doi:10.3389/fpsyg.2015.02024
Mazzone L, Ruta L, Reale L.Psychiatric comorbidities in Asperger syndrome and high functioning autism: Diagnostic challenges.Ann Gen Psychiatry. 2012;11(1):16. doi:10.1186/1744-859X-11-16
Halladay AK, Bishop S, Constantino JN, et al.Sex and gender differences in autism spectrum disorder: Summarizing evidence gaps and identifying emerging areas of priority.Mol Autism.2015;6:36. doi:10.1186/s13229-015-0019-y
Aylward BS, Gal-Szabo DE, Taraman S.Racial, ethnic, and sociodemographic disparities in diagnosis of children with autism apectrum disorder.J Dev Behav Pediatr.2021 Oct-Nov;42(8):682–9. doi:10.1097/DBP.0000000000000996
Donohue MR, Childs AW, Richards M, et al.Race influences parent report of concerns about symptoms of autism spectrum disorder.Autism. 2019;23:100–11. doi:10.1177/1362361317722030
Lewis LF.A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults.J Autism Dev Disord.2017 Aug;47(8):2410-2424. doi:10.1007/s10803-017-3168-3
Yu Q, Li E, Li L, Liang W.Efficacy of interventions based on applied behavior analysis for autism spectrum disorder: a meta-analysis.Psychiatry Investig.2020 May;17(5):432–443. doi:10.30773/pi.2019.0229
Roth ME, Gillis JM, DiGennaro Reed FD. DiGennaro Reed.A meta-analysis of behavioral interventions for adolescents and adults with autism spectrum disorders.J Behav Educ.2014;23:258–286. doi:10.1007/s10864-013-9189-x
National Institutes of Health.Medication treatment for autism.
Lai MC, Baron-Cohen S.Identifying the lost generation of adults with autism spectrum conditions.Lancet Psychiatry.2015;2(11):1013-27. doi:10.1016/S2215-0366(15)00277-1Mandy W, Clarke K, McKenner M, et al.Assessing autism in adults: An evaluation of the developmental, dimensional and diagnostic interview-adult version (3Di-adult).J Autism Dev Disord. 2017;48(2):549-60. doi:10.1177/0269881117741766
Lai MC, Baron-Cohen S.Identifying the lost generation of adults with autism spectrum conditions.Lancet Psychiatry.2015;2(11):1013-27. doi:10.1016/S2215-0366(15)00277-1
Mandy W, Clarke K, McKenner M, et al.Assessing autism in adults: An evaluation of the developmental, dimensional and diagnostic interview-adult version (3Di-adult).J Autism Dev Disord. 2017;48(2):549-60. doi:10.1177/0269881117741766
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