TELLING IT LIKE IT IS

Autism Defined

“If you know a child with autism, you know a child with autism”.

Autism is a neurodevelopmental disorder characterized by deficits in social communication and social reciprocity, as well repetitive patterns of behavior and/or restricted interests. Symptoms cause impairment in the child’s ability to function at school. It’s a wide spectrum with varying levels of severity. 

Red Flags

Red Flags may appear as early as 6 months of age (e.g. limited eye contact; little-to-no joyful engagement or expression…).

  • Absence of Joint Attention
  • Lack of response to name
  • Limited eye contact
  • May, at times, seem to be deaf
  • Lack of gestures (e.g. pointing, waving “bye-bye”…)
  • Intense tantrums
  • Peculiar movement patterns (e.g. hand/finger mannerisms, body posturing, tiptoe walking, running back and forth aimlessly…)
  • Limited interest in functional play or social interaction
  • Speech is delayed/Language skills are slow to develop
  • Loss of any previously acquired skills

DSM-5 Autism Diagnostic Criteria

  1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
  2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
  3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity: Severity is based on social communication impairments and restricted repetitive patterns of behavior. (See table below.)

  1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
  2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take the same route or eat food every day).
  3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
  4. Hyper- or hypo reactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior. (See table below.)

  • Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).
  • Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  • These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:

  • With or without accompanying intellectual impairment
  • With or without accompanying language impairment (Coding note: Use additional code to identify the associated medical or genetic condition.)
  • Associated with another neurodevelopmental, mental, or behavioral disorder (Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
  • With catatonia
  • Associated with a known medical or genetic condition or environmental factor

“Requiring very substantial support”

– Social communication: Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.

Restricted, repetitive behaviors:

-Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

“Requiring substantial support”

– Social communication: Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with support in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and how has markedly odd nonverbal communication.

Restricted, repetitive behaviors:

– Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.

“Requiring support”

– Social communication: Without support in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Restricted, repetitive behaviors:

– Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Possible Comorbidity

  • Epilepsy/seizures
  • Sleep disorders/disturbance
  • ADHD
  • Intellectual Disability
  • Gastrointestinal disorders
  • Feeding/eating challenges
  • Obesity
  • Psychiatric Comorbidities (Anxiety, Depression, Bipolar Disorder…)

Possible Differential Diagnoses

  • Rett Syndrome
  • Selective Mutism
  • Pragmatic Communication Disorder
  • Stereotypic Movement Disorder
  • Schizophrenia

Diagnostic Process: Dos and Don’ts

  • Everyone’s entitled to their own opinions, not their own facts!
    It’s not a matter of opinion. Don’t trust a diagnosis (or the exclusion of a diagnosis) based on a 15-minute observation and discussion!
    In terms of best practice, we recommend the gathering of information from multiple sources using various tools. As a first step, the child will undergo a brief screening process (e.g. M-CHAT). Should he appear to be at risk of a diagnosis, he is referred to the diagnostic team.

  • A comprehensive interview with the parents/primary caregivers is crucial to obtain accurate, detailed information about the child’s developmental history, milestones, red flags, and current concerns. Furthermore, it is important that the diagnostic team observe the child in his natural environment, either on-site or via video. Finally, the diagnosis should meet the criteria set forth in the DSM-V.
    Inter-observer agreement is also necessary.

Diagnostic Tools

Such diagnostic tools may be used as: ADIR, ADOS, CARRS, GARRS, among others. The data collected with these diagnostic tools provide evidence to corroborate the diagnostic criteria as outlined by the DSM V.
Official diagnosis is ultimately provided by a qualified professional (e.g. child psychiatrist/psychologist, pediatric neurologist…)

Now We Know… What’s Next?

It’s important that parents be provided with proper guidance based on a scientifically-validated approach.

  • The most effective, evidence-based intervention in treatment of Autism  is Applied Behavior Analysis;
    – A BCBA can assess the skills and behavioral excesses and work with the stakeholders to set up an intervention plan (Individualized Education Program, Behavior Intervention Plan…)
  • Paraprofessionals (behavior technicians, facilitators, “shadows”…) are trained in the implementation of the intervention plans and are regularly supervised by the BCBA, the programs regularly revised/updated.
    – Caregivers/Stakeholders receive coaching, training, and support.
    – The ABA team may opt to draw from several well-established tools/curricula including, but not restricted to: VB-MAPP, ABLLS, EFL, IGLR, ESDM, AFLS, PEAK, etc.
    – Ideally, the child should receive at least 25-40 hours per week of ABA intervention across different people and in different settings (the child’s environment: home, community, school/daycare, etc.). Suffice to say, the greater the intensity of intervention, the more promising the outcomes.

It is important to bear in mind that inter-professional collaboration is crucial and serves the child’s best interests, a team involving (depending on the child’s individual needs): therapists (BCBA, SLP, OT, Physiotherapist…), special educators, nutritionists, paraprofessionals, and – most importantly – the child’s primary caregivers.

Don’t be fooled with false promises offered by charlatans… a child with Autism will not be “cured” of autism… they will always have Autism, but any debilitating “symptoms” will be managed, skill repertoires grow, and they can enjoy a vastly improved quality of life. And don’t allow yourself to be swayed by pseudoscientific approaches that either have no evidence supporting them or, worse yet, have been proven to be ineffective or even detrimental.