Dr. Robert Dudas may have spoken to the essence of this controversial topic when he said: “Nobody meets a textbook definition of a condition.” He said this when discussing observations regarding a study about the overlap between austistic spectrum conditions and borderline personality disorder (Dudas et al., 2017). Indeed nobody…especially when it comes to autism where the spectrum is so broad.
The reason the concept of borderline autism is so controversial is because those whose lives have been impacted severely by autism feel strongly about people jumping on the bandwagon with no regard for their journey.
Parents who put their lives on hold, who face every imaginable hurdle to take care of say a nonverbal autistic child with comorbidities like epilepsy, are perhaps justified in being sceptic over the musings about borderline autism from someone whose child is slightly awkward with a penchant for mathematical brilliance.
On the other hand, parents who see their child struggling day after day without the “finally having some answers!” epiphany of a diagnosis, and subsequent therapeutic interventions, have every right to advocate for that child.
These children are caught between the devil and a sea of misdiagnoses with terms like: pervasive developmental disorder not otherwise specified (PDD-NOS), asperger’s, childhood disintegrative disorder, and high functioning autism, adding to the confusion.
As an illustration of just how heated this topic can get; look no further than actor and comedian Jerry Seinfeld. When he self-diagnosed as being on the spectrum, many people did not get it. Some did, and were not pleased.
Outrage prevailed on autism discussion forums, with some parents who care for autistic kids seeing his statement as belittling a very serious condition. Many felt the actor/comedian needed to see their daily struggle, the sacrifice and hard work involved in caring for a high needs child or adult with autism spectrum disorder (ASD).
Those caring for nonverbal children failed to see how the comedian—sophisticatedly playing around with language and the social nuances of humanity for laughs—could be on the spectrum.
Others welcomed the spotlight and awareness a celebrity’s diagnosis brought to autism spectrum disorders; self-diagnosed and all. Seinfeld did retract the controversial statement, clarifying that he did not have autism but just related to aspects of the condition.
No one’s perfect and we still love you Seinfeld, but what does this mean for individuals, especially children, who display symptoms of autism but who don’t meet the core requirements necessary for an autism diagnosis?
What is borderline autism?
In this article I’ll be examining the term borderline autism as a possible diagnosis; or as an alternative term for high functioning, atypical, or mild autism. Terms like asperger’s syndrome and pervasive developmental disorders-not otherwise specified (PDD-NOS) will be investigated to see whether symptoms of these conditions may lead individuals to be “diagnosed” or informally labeled with borderline autism.
In this regard it is important to realize that autism is diagnosed as a spectrum disorder. Terms like high functioning autism or borderline autism are not an official diagnosis, but rather an informal way of referring to the severity of symptoms experienced. Thus when referring to a diagnosis of high functioning autism, mild autism, or borderline autism, remember these are unofficial terms, and the word “diagnosis” is used informally.
Autism will be defined and the wide berth of its spectrum will be discussed. The criteria and various factors influencing diagnosis will be investigated to ascertain whether borderline autism has a place (and function) on the spectrum.
Surge in autism diagnosis
The last decade has seen a notable rise in children being diagnosed with autism. According to survey results detailing prevalence in the US (Zablotsky et al., 2019) the numbers rose from 1 in 91 children in 2009, to 1 in 40 in 2017.
While there is still much discussion and many conflicting theories about the increase, many experts do feel the rise in awareness of ASD, and its related symptoms, play a part.
Gone are the days of “trying to sleep when the baby sleeps”; instead mothers are often using baby’s nap time to educate themselves and to Google any of their baby’s symptoms and unmet milestones.
Parents are much more informed about behaviors related to autism, this could be one of the reasons more children are being diagnosed early on. Early detection of atypical eye contact patterns have led to the diagnosis of many children with autism—early diagnosis means these children benefit from early intervention strategies. This is why parents should immediately consult with a medical professional, like a pediatrician, when they suspect their child may have autism; even if the symptoms appear borderline or mild.
Autism and the spectrum
Before borderline autism is further examined, it may be useful to look at an exact definition of autism itself.
The Diagnostic and Statistical Manual of Mental Disorders (5th ed.;DSM-5; American Psychiatric Association, 2013) includes the previous manual’s autistic disorder, asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified in its definition of ASD.
The DSM-5 has certain criteria that must be fulfilled for a professional to diagnose a child with an autism spectrum disorder. These are:
- Difficulties in social communication
- Restricted, repetitive patterns of behavior or interests (includes atypical sensory behaviors)
Children must show difficulties in both areas and they should have these characteristics from early on (although sometimes these characteristics won’t be picked up till later). The DSM-5’s criteria for ASD is very detailed; parents can consult the manual and various other resources where examples of behaviors are provided for clarification.
Some people argue that the manual defines autism too strictly which leaves out borderline cases and will leave such individuals without a diagnosis. Others feel the strict criteria of the DSM-5—and its subsequent exclusion of borderline or mild cases—will ensure those severely affected by autism are the ones easily diagnosed and qualifying for state services.
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Not quite on the border
This definition of autism with its inclusion of asperger’s (a term no longer medically used for diagnosis) becomes really important when parents want help for their children with milder symptoms. High functioning autism, which can present as asperger’s, is included in the definition for autism according to the DSM-5. Even though a child with high-functioning autism will differ from a nonverbal child with severe symptoms; both are included in the criteria, and both fall on the autism spectrum.
Diagnosis of autism will always be fraught with difficulties due to the nature of a spectrum condition. For parents it may be useful to look at some of the symptoms of conditions often thought of as borderline autism to determine whether a child does in fact meet the criteria for autism, wherever it may be on the spectrum.
Autism and its threshold: similar conditions to note
As mentioned before, many conditions which were previously stand-alone diagnosis (like asperger’s) are now encompassed in the definition of ASD. Other conditions, like Social Communication Disorder, are considered a separate condition that may share many of the symptoms associated with autism.
Let’s take a look at some of the conditions often associated with autism (many of these have symptoms that may cause parents to search out an informal diagnosis like borderline autism):
Asperger’s is probably the most romanticized condition on the autism spectrum. Increasingly portrayed in popular media, characters with asperger’s are embraced for their quirks and uniqueness. Even though it is no longer an official diagnosis, people are fascinated by the idea of someone with normal or gifted intelligence but who struggles with social interaction.
Hans Asperger, an Austrian pediatrician for whom asperger’s disorder (or syndrome) was named, was part of the group of researchers who first described autism and his work contributed to the concept of a “spectrum condition”.
The term asperger’s now falls under the broader term of autism spectrum disorders (ASD). Not everyone was happy about the condition losing its stand-alone diagnosis, some feel those with mild autism symptoms (often displayed by “Aspies”) will be excluded from the autism spectrum criteria described by the DSM-5.
Even as an unofficial diagnosis or informal term, asperger’s may face extinction as more research is detailing the alleged problematic ties of Hans Asperger.
The essence of asperger’s is high-functioning autism. Parents recognising these symptoms should seek a diagnosis, because high-functioning or mild autism is still autism.
The following criteria was listed by the Diagnostic and statistical manual of mental disorders (4th ed, rev.) or DSM-4 as criteria for asperger’s (when it was a stand-alone medical diagnosis, before the DSM-5 included it under the general term of autism spectrum disorder):
- Impairment in social interaction. A long list is provided including impairments in the use of nonverbal behaviors, failure to develop appropriate peer relationships, deficiencies in spontaneous seeking to share enjoyment and interests, and deficits in emotional and social reciprocity—the social impairment should be shown in at least two of these
- Restricted and repetitive patterns of behavior and restricted interests abnormal in the scope of its intensity and/or focus
- These deficits should cause significant impairment in areas of functioning
- No general delay in language which is clinically significant
- No delay in cognitive development or age-appropriate self-help skills etc. which is clinically significant
- Criteria for Schizophrenia or PPD should not be met
This was a summary of the DSM-4’s criteria for asperger’s, for the full criteria the manual should be consulted.
When viewing the above criteria, one can see why asperger’s may be thought of as high-functioning autism. It does fall on the spectrum, and a child who meets the above criteria should be diagnosed to receive the necessary services and intervention.
Even though the DSM-5 no longer recognizes asperger’s as a separate diagnoses, it does state the following: “Individuals with a well-established DSM-IV diagnoses of autistic disorder, asperger’s disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”
Your child may not display language deficits and he/she may possess above average intellect, but behavior in social contexts and restricted interests may have alerted you to take action. It may be the reason you as a parent searched out symptoms of high-functioning, mild or borderline autism. Your child’s behavior may not fit the picture society has of autism, but if he or she is on the spectrum, a diagnosis is important to access appropriate treatment.
Pervasive Developmental Disorder-Not Otherwise specified (PDD-NOS)
Just like asperger’s, PDD-NOS was replaced by the DSM-5 and now falls under the umbrella diagnostic label of ASD. When PDD-NOS was one of the five separate categories of autism, the DSM-4 classified the condition as follows:
"This category should be used when there is severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes “atypical autism” – presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these."
Apparently, doctors used terms like “threshold” or even “borderline autism” when diagnosing a child with PDD-NOS, because the diagnosis made sense when a child did not meet all the criteria for asperger’s or autism. It was also diagnosed when symptoms appeared later, or when a child had mild deficits in one area and severe deficiencies in another.
The DSM-5 recognizes a spectrum of autism, and atypical symptoms such as these now fall under the diagnostic label of ASD. Once again, parents should seek medical intervention even then symptoms appear later, are atypical or borderline.
While it may seem like the DSM-5 got rid of a whole lot of terms, a new diagnostic category was also added. The category social (pragmatic) communication disorder (SCD) is discussed in a research review (Swineford et al., 2014) where the disorder is defined as a primary deficit in the social use of verbal and nonverbal communication. Specific characteristics of the disorder are listed in the review:
- Deficits in language used for social purposes
- Difficulty in appropriately matching communication to a specific social situation or context
- Difficulties with back and forth conversation
- Misunderstanding jokes, idioms and metaphors (non-literal aspects of language)
- Challenges and difficulties to relating and integrating language with nonverbal communication
It is further stated (Swineford et al., 2014) that, as these deficits concern higher-order pragmatics, sufficient language skills must first be developed before seeking a SCD diagnosis.
This new category may be relevant to parents concerned about borderline autism. SCD and ASD both require deficits in social communication skills, but those diagnosed with SCD should not meet the other criteria for ASD—restricted interests, repetitive behaviors, insistence on sameness, and sensory impairments.
When PDD-NOS was a stand-alone diagnosis it was the diagnosis doctors found helpful when a child’s autistic symptoms were atypical, or when a child did not meet all of the ASD criteria. Parents were worried that leaving it out would cause certain kids to fall through the cracks.
A study evaluating SCD or, as it is referred to in this particular study, social pragmatic communication disorder (SPCD), discussed some interesting points about the validity of SPCD as a distinct syndrome from ASD (Mandy et al., 2017).
The investigation did not find evidence that SPCD is qualitatively distinct from ASD. In the study’s conclusion SPCD is said to lie on the borderlands of ASD. It may therefore be useful to diagnose and describe individuals with autistic traits falling below the threshold of ASD.
For parents who need support for their child with symptoms insufficient for an ASD diagnosis, a diagnosis of SPCD may be the answer. Especially if the child’s symptoms or deficiencies are all in the social context with no repetitive behaviors and restricted interests.
Autism or not?
There are other conditions and disorders with signs and symptoms commonly seen in people with autism. Parents may mistake these symptoms as indicating mild or borderline ASD. Attention deficit hyperactivity disorder (ADHD) is a seperate condition that shares some symptoms with ASD. Adding to the confusion is the fact that a child can be diagnosed with both.
Schizophrenia also shares some clinical features with ASD. Therefore, even when a child presents with symptoms that don’t quite meet the criteria for autism, parents should visit their doctor or pediatrician instead of assuming and self-diagnosing with informal labels like mild or high-functioning autism—or borderline autism.
Pop-culture is embracing neurodiversity, which is long overdue, but it also normalizes behavior that needs medical intervention. A child with autism, no matter where they fall on the spectrum, needs a diagnosis and is likely to benefit from therapeutic intervention.
Parents self-diagnosing their children with mild or borderline autism (and assuming their deficits don’t require medical treatment) may deprive these children of appropriate intervention that could increase their quality of life dramatically.
Parents who suspect autism in their child may face many challenges to get an appropriate diagnosis. The challenge may be more arduous when the child is displaying only mild symptoms or not all of the symptoms associated with autism.
Don’t give up, find someone who will look further than a standard text book diagnosis of autism. Someone who takes the time to really investigate your child’s history, symptoms and behavior. Be wary of any doctor who summarily dismisses your concerns because of atypical representation. You may even remind them of the famous quote of Dr. Stepan Shore (IBCCES Board Member and international speaker): “If you’ve met one person with autism, you’ve met one person with autism.”
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., rev.). Washington DC: Author. (Pg. 84)
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596.
Dudas, R. B., Lovejoy, C., Cassidy, S., Allison, C., Smith, P., & Baron-Cohen, S. (2017). The overlap between autistic spectrum conditions and borderline personality disorder. PloS one, 12(9), e0184447. https://doi.org/10.1371/journal.pone.0184447
Mandy, W., Wang, A., Lee, I., & Skuse, D. (2017). Evaluating social (pragmatic) communication disorder. Journal of child psychology and psychiatry, and allied disciplines, 58(10), 1166–1175. https://doi.org/10.1111/jcpp.12785
Swineford, L. B., Thurm, A., Baird, G., Wetherby, A. M., & Swedo, S. (2014). Social (pragmatic) communication disorder: a research review of this new DSM-5 diagnostic category. Journal of neurodevelopmental disorders, 6(1), 41. https://doi.org/10.1186/1866-1955-6-41
Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A., Danielson, M. L., Bitsko, R. H., Blumberg, S. J., Kogan, M. D., & Boyle, C. A. (2019). Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009-2017. Pediatrics,144(4), e20190811. https://doi.org/10.1542/peds.2019-0811