In my career as a psychologist, I’ve seen many children misdiagnosed as autistic. It’s a clinical catastrophe

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The All-Purpose Diagnosis

The one-size-fits-all Autism Spectrum Disorder (ASD) diagnosis, as configured in the Revised Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM- 5-TR), is a clinical catastrophe.

Well-meaning child practitioners who take the current DSM autism criteria at face value likely assume that the widely-used Autism Spectrum Disorder (ASD) diagnosis provides them with understanding of and insight into children’s developmental difficulties and a reliable basis for making educational placement and treatment recommendations.  Nothing could be further from the truth.

During my extensive career, I have encountered literally thousands of young children whose developmental challenges had been misdiagnosed in other clinics as autistic or, more currently, “on the spectrum.”  Victims of what I consider the promiscuous use of the autism diagnosis, actualization of their developmental potential was compromised when treatment decisions were based on the current clinically ill-conceived autism diagnosis, which most often proved to be a misdiagnosis.

As I discuss below, a small minority of the many autism-suspected children I saw did fit the original criteria for autism.  However, it is far too easy for a child to get an autism diagnosis these days.  Why?  A careful reading of the DSM-5-TR autism criteria immediately exposes the core problem.  In the autism criteria section “Deficits in Social Communication,” we notice that the first three criteria refer to a range of symptoms, from the mild and superficial to the profound and entrenched.  A range of symptoms to establish a diagnosis?  This would be amusing, if the implications were not so serious.

Evidently, in 2013 the autism criteria in the DSM-5 were intentionally expanded so that more children could qualify for the therapeutic services they required.   Unfortunately, by fusing together several already indistinct diagnoses—Pervasive Developmental Disorder (PDD), Asperger’s and Autism—and by loosening the autism diagnostic criteria to enable the autism “catchment area” to expand to a range of symptoms and several levels of severity, a diagnostic monster was created.  Like The Blob of the old horror films, this diagnosis oozes into all the crevices, providing a handy diagnostic label for almost any developmental challenge that affects social communication.

There is a further difficulty in the section that concerns Stereotypical and Repetitive Behaviors.  The DSM-5 (and now the DSM-5-TR) correctly introduced as a criterion the issue of sensory hypo- and hyper-reactivity.  It is, in fact, critical to note a child’s degree of sensory reactivity when autism is suspected, because we can expect genuinely autistic children to experience some degree of sensory hypo- or hyper-reactivity.  However, this manifestation does not work in reverse.  In other words, not all children with sensory issues are necessarily autistic.  Unfortunately, with the doors of the autism diagnosis flung open so widely, I continue to encounter young children with sensory reactivity problems who have been misdiagnosed by practitioners as ASD.

The conceptualization of a range of symptoms, from light to severe, leads only too readily to the current prevalent, unquestioning use of the term “autistic spectrum.”  The concept of a spectrum cannot even begin to provide a differential diagnosis. Consider the following.  If your doctor diagnosed your headaches as “Headache Spectrum Disorder,” would you accept such a facile, superficial understanding of your pain?   I doubt it.  You would want to know what underlies your headaches.  Are they attributable to visual strain?  Stress and tension? Poor sleep? A vitamin deficiency?  A reaction to medication?  A brain tumor?

Using the term “Autism Spectrum Disorder” does enormous disservice to children, because it glosses over the many developmental specifics that might underlie a child’s challenges related to social communication.  In the field today, there appears to be an astonishing degree of practitioners’ overlooking the fundamental clinical reality that symptoms have roots!  The same symptom, observed behaviorally, can stem from myriad developmental and contextual factors. Take, for example, the DSM-5-TR autism criterion “failure to initiate or respond to social interactions.”  If we allow ourselves to think clinically, analytically, and creatively, we immediately see that this social difficulty visible on the surface could be attributed to any of numerous possible underlying causes:  under-confidence and social shyness; an undiagnosed hearing impairment; giftedness, with the child’s interests lying in other than social realms; a problem affecting speech, such as a word-processing difficulty, a stutter or stammer, a word retrieval challenge, or oral dyspraxia.  In addition, children who have witnessed domestic violence, who have been physically or sexually abused, who suffer from depression, or who have experienced trauma will also check that symptom box of “failure to initiate or respond to social interactions.”

What is going on here? Tallying surface symptoms—without considering key developmental influences, as well as the child’s social-emotional context and certain physiological variables, such as food sensitivities, hearing loss, sensory overload and so on—too easily leads to a falsely positive autism diagnosis.

We see then that a close reading and thoughtful consideration of the DSM-5-TR autism criteria expose a number of weaknesses in logic and in developmental assumptions, making this diagnosis a truly elastic, one-size-fits-all concept.  What is the result of such accommodating diagnostic criteria?  A huge incidence of false positives, not commonly acknowledged in the field.  It is no wonder that the statistical incidence of autism appears to be soaring, triggering concerns about an autism epidemic.  I estimate that of the thousands of autism-diagnosed children whom I have reassessed using qualitative (that is, descriptive, functional, interactive, developmentally sensitive) means, at least 90% of them had been misdiagnosed as autistic when the DSM had been used previously at other clinics.

Diagnostic Promiscuity

The overly flexible configuration of diagnostic criteria fuels what I call the promiscuous diagnosing of autism today.  The result, a recurring theme in this article, is the rampant misdiagnosis of autism.  In over 30 years of clinical experience in this field, I have found the following childhood developmental difficulties to have frequently been misdiagnosed as autism by practitioners who applied DSM-IV, DSM-5 or DSM-5-TR criteria:

  • mild to moderate emotional difficulties.
  • more serious emotional difficulties which appeared to be related to psychosis, as later confirmed by a specialist.
  • oral dyspraxia, a condition in which the hard-wiring between the brain and oral musculature is disconnected, leaving the child able to understand language but unable to produce it.
  • moderate to profound hearing impairments which had gone undiagnosed, or, if already diagnosed, whose impact had been misinterpreted as autism.
  • selective mutism.
  • brain abnormalities; genetic syndromes; Rett’s Disorder—all later confirmed by medical specialists. Alternatively, a child’s brain or genetic abnormality may have already been identified, but the impact of that abnormality had been misconstrued as autism, because the child’s resulting communication problems mimicked the broadly configured symptoms of autism.
  • miscellaneous developmental difficulties, despite normative medical test results.
  • developmental delays in children who evidenced normative potential, but who simply needed more time, patience and understanding to reach their potential. Some needed targeted therapies for speech, motricity, learning skills, or emotional well-being to close minor developmental gaps.

Unfortunately, prematurely and erroneously misconstruing as autism virtually any delay in anticipated age-level social/verbal communication is an all too common phenomenon, with the autism misdiagnosis then negatively impacting on the entire trajectory of a child’s developmental path.

 

The Aftermath of an Autism Misdiagnosis

The ramifications of an autism misdiagnosis are far-reaching.  First of all, in conventional symptom-focused assessment the child’s strengths are often disregarded.  Then when autistic-like symptoms and the all-too-persuasive autism diagnosis are brought into high-relief and emphasized in a child’s profile, that child’s evident and latent strengths and normative capacities are further overlooked.  Because the child’s profile has been seen through a distorted diagnostic lens, the understanding of a child’s entire personality and functional potential becomes subsumed under the ASD diagnosis.

Secondly, it is not just the child’s strengths that may be overlooked during conventional assessment. Equally worryingly, the underlying weaknesses, the specific roots and causes that trigger or contribute to the autistic-like symptoms evident on the surface often do not receive the treatment attention they require.  If, for example, a child’s sensory issues, hearing loss, oral dyspraxia or emotional challenges are not recognized and then treated effectively, that child will likely continue to present with autistic-like behaviors–a situation that could be remedied with effective attention to these underlying contributors to the child’s difficulties.

A third factor concerns the well-meaning but essentially misguided recommendations regarding treatment interventions and educational placements that often result when professionals rely on the elastic DSM autism criteria as a basis for their recommendations.  Unfortunately, an autism diagnosis or misdiagnosis possesses the power to cast an enduring shadow over a child’s entire future, depending on the recommendations and interventions that result.

As a long-time witness to the aftermath of autism misdiagnoses, I have found this particularly troubling, as the following examples illustrate.  Five-year-old Joe had a word-processing problem.  Intimidated by the assessor during a DSM symptom-focused assessment, he had refused to speak or to cooperate.  He left the hospital assessment clinic with an autism misdiagnosis and a recommendation for placement in an autism kindergarten.  Similarly, the practitioner who relied on Matt’s DSM-derived diagnosis of autism advised his parents:  “Don’t bother talking to him.  He is autistic.  He doesn’t understand language.”  My speech therapist colleague strongly advised the parents to do precisely the opposite—speak to him generously!

Finally, there is the significant, usually negative, emotional impact on parents whose child has received an autism diagnosis—or misdiagnosis.  The emotional impact of a child’s autism diagnosis can prompt parents to suffer emotions that range from discouragement and sadness to depression and even a sense of mourning.  Too often, along with the autism diagnosis, parents receive from practitioners a negative and pessimistic prognosis about their child’s future.  The result may be that parents find that they are not available emotionally to their child, at precisely the developmental stage that the challenged child needs parents most.  Are parents to blame for such a situation?  Not in the least, because parents are simply responding to the information they received from specialists they trusted.

I invested much time with parents, doggedly educating them about the meaninglessness of the elastic autism spectrum diagnosis, trying to neutralize their despair, and helping them reset their child’s developmental and educational goals in a way that attended to underlying causes while nurturing the child’s strengths and abilities.  Even when, by using dynamic, interactive, descriptive means of assessment, I ascertained that the child was indeed autistic, the work with parents proceeded in the same strength-focused direction, affirming to parents that autism is a state, not a trait, and that the ability to grow and change is intrinsic to all human beings.

Fortunately, I have had the good fortune to have been mentored by courageous, brilliant psychologists whose models of intervention provided a creative and efficacious way of assessing and treating suspected autism without using the DSM criteria.   As a result, my colleagues and I were able to change positively the developmental trajectories of many hundreds of young children who had been diagnosed elsewhere, whether correctly or incorrectly, as autistic.

 

An Accurate Autism Diagnosis?

Are all diagnoses of autism essentially misdiagnoses? No, not all.  I estimate that well over 90% of the autism-diagnosed children I saw had been misdiagnosed elsewhere by practitioners using the DSM.  However, there were a few children who met the more intense, focused original criteria dating back to 1943.

In this article, I have occasionally used the term “genuinely autistic.” By this, I mean children who evidence extreme emotional cutoff-ness along with entrenched perseverative behaviors.  That is, their presentation typifies the two primary diagnostic criteria originally formulated by Leo Kanner.  Recognizing that the elastic DSM-5 and DSM-5-TR autism criteria do not even begin to provide a basis for a reliable differential diagnosis, I have found it helpful when assessing autism-suspected children to keep the focused criteria of Kanner as a mental benchmark for a genuinely autistic condition.  Most of the other autism-suspected children proved to have autistiform (autistic-like) behaviors, but not actual autism.  The vast majority of the children I have encountered required sensitive clinical work to decipher the root causes of their autistiform, although not autistic, developmental symptoms.

 

Hope

And if, by using the strict criteria of Kanner, the autism diagnosis proves accurate, is there still hope for the genuinely autistic child?  Yes!  In my office, positive changes begin, first of all, by casting aside the symptom-focused diagnosis and mindset and then by searching for evidence of the child behind the symptoms.  This means searching for sparks of developmental ability which can be fanned into a warm developmental bonfire.

The next step requires painstaking attention to emotional, sensory, physiological and contextual influences on development.  What factors might be impeding normative social communication development?

I have found that adapting the interactive, developmental play strategies of the brilliantly conceived DIRFloortime model of Drs. Serena Wieder and Stanley Greenspan has proved to offer a much more reliable way of assessing children’s developmental strengths and weaknesses than tallying surface symptoms as per the DSM.  DIR play-based interactions with a child provide a dynamic, descriptive profile in real time.  The question that then motivates the work is not “What does this child have?” but rather “What can this child become?

The exceptional philosophy and methods of the late, courageous educational psychologist Reuven Feuerstein have provided inspiration, vision, alternative methodology and terminology.  Feuerstein’s life’s work was rooted in an ironclad belief in the potential for modifiability as an intrinsic feature of being human.  His optimistic, non-conventional strength-focused methods of working with children and adults with special needs provided the fertile ground for creative, out-of-the-box thinking about autism, unfettered by the conventional need for a diagnosis.  Feuerstein’s strength-focused notion of searching for “islets of normalcy” and growing these islets into veritable continents dovetailed beautifully with the DIRFloortime notion of circles of communication.  Instead of using the DSM symptom checklist, I look for islets of normalcy.  What to do with them?  Create ever longer chains of circles of communication.  The result has very often been developmental magic, as children grow in strength and gradually shed their autistiform symptoms.

Closing Thoughts

So often autism is treated like a terminal disease for which improvements may be sought but from which total recovery is not anticipated.  How sad and how unwarranted.  I have been fortunate to work with inspired colleagues and to have been able to fuse effective, alternative developmental methods for autism assessment and treatment.  These methods focused on children’s strengths, not symptoms, and with such encouraging results.

 

It is important to remember that not every developmental difficulty has a specific label.  Nor do all developmental difficulties require diagnostic labels.  It is far more important to understand what is happening to a child physiologically, emotionally, and contextually than to label that child.  This is a clinical reality that is very difficult for practitioners working in a symptom-focused and diagnosis-based framework to internalize and appreciate.  I believe that effective clinical work can only begin when we put the autism diagnosis aside and strive to reach, understand and assist the child behind the symptoms.  That is what counts.

 

Editor’s note: Dr Shoshana Levin Fox’s book “An autism casebook for parents and practitioners: The child behind the symptoms” is available here

 

 

Reference List:

Feuerstein, R.,  Rand, Y. & Rynders, J. E. (1988).  Don’t accept me as I am.  New York:  Springer.

Greenspan, S. I. & Wieder, S. (1998).  The child with special needs. Reading: Addison-Wesley.

Kanner, L. (1943).  Autistic disturbances of affective contact.  Nervous Child, 2, 217-250.

Levin Fox, S.  (2020).  An autism casebook for parents and practitioners: The child behind the symptoms.  New York:  Routledge.

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Dr. Shoshana Levin Fox is a Jerusalem-based child psychologist and play therapist whose career with typical and special needs children spans nearly 40 years. While at the Feuerstein Institute in Jerusalem between 1992 and 2017, she specialized in the use of play therapy and DIRFloortime to functionally assess and treat children considered autistic. In her book, An Autism Casebook for Parents and Practitioners: The Child Behind the Symptoms [Routledge, 2020], Shoshana shares her unique and effective approach to helping autism- diagnosed children progress. Her writing interests include autism; play-base methods of autism assessment and treatment; the role of play in child development and related topics. She consults to parents and practitioners in the field of autism and maintains a private practice in play therapy for young children. Learn more at www.shoshanalevinfox.com.

1 COMMENT

  1. Thank you very much Shoshana for this extremely interesting and enlightening article. I find ‘labelling’ extremely damaging. A DSM value can be applied far too quickly. You highlight perfectly using the comparison of ‘Headache Spectrum Disorder’ by a medically qualified doctor. Symptoms do have root causes and can be a wide-ranging and generally multifaceted from genetic disorders, to physical illnesses, diseases, conditions, food intolerances, personalities and the family unit themself.
    I would like to understand whether parents are pushing more for diagnoses because they are more aware of Autism. Whether they are comparing their children or others’s children and often wrongly believing that there is something amiss with one of their offspring.

    Parents can be rather distracted to actually understand their individual child. We are now privy to masses of information on-line with many Social Media platforms. I personally am aware of one woman who convinced herself she had ADHD. So, I asked which Social Media platforms she used. ALL of them was her response and she could not miss a thing. I explained that she was not giving her brain any DOWN TIME. To switch off her phone and enjoy walking her dog on the beach. One of the biggest problems we have is erroneously believing that Social Media is social. We are actually loosing our Social Skills because of technology. People are not talking to each other.

    Trust me, I was once a Software Engineer, most of us did not own computers, we wrote things out long-hand on paper and it was in our head. We would program the computers in a laboratory. When anyone got get fed up, or stuck, someone would say. So, we went hiking, where we laughed, joked and enjoyed nature.
    Times have really changed, we are heavily reliant on technology, there are 3.55 million Apps. All Computer Scientist know that we model our work on the Human Brain. It is one of the finest ‘machines’ ever. Artificial Intelligence is just that but it is the creativity, imagination and design of a REAL PERSON.

    Best wishes