Parenting tweens, teens, and young adults with autism spectrum disorder (ASD) – help, hope, and guidance.

April is Autism Awareness Month, a time when South Africa and the world alike, unite to raise much-needed support for ASD.  While we are actively engaging in awareness campaigns, the people who need our support are often the parents of children with an autism spectrum disorder.

What does the latest research about Autism Spectrum Disorder say?


In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger syndrome.

Doctors have defined autism spectrum disorder (ASD) as a neurobiological developmental condition that can impact communication, sensory processing, and social interactions. Autism Spectrum Disorder is a lifelong, extremely complex developmental condition that appears to occur as a result of multifactorial environmental triggers interacting with a genetic predisposition.


As of March 26, 2021, the Centers for Disease Control and Prevention (CDC) report that among 8-year-old children, one in 54 are autistic and it affects 4 times as many boys as girls, but most recent stats put the estimate as one in 44. Dr Neil McGibbon, a Cape Town-based clinical psychologist who works with teenagers on the spectrum, believes that “there have been some recent indications that girls might have been overlooked in error and as a result not sufficient research done”. This is because the autism spectrum looks different in girls. Vicky Lamb, the national education facilitator of Autism South Africa, estimates that about a million people in South Africa have autism, based on global statistics. However, she added, there are not “enough professionals in the country who are able to make a diagnosis”. This shortage of trained professionals means only some of the South Africans with autism will actually be diagnosed. The onset of ASD is from birth or before the age of 3 years.


Autism affects how an individual perceives the world and makes communication and social interaction different from those without autism, often leading to significant difficulties. ASD is characterized by social-interaction challenges, communication difficulties, and a tendency to engage in repetitive behaviors. However, symptoms and their severity vary widely across these three core areas, also known as the “Triad of Impairments”. Some of the more common traits are listed below:


– Little awareness of others, or of their feelings;

– Poor or absent ability to make appropriate social contact;

– The most severe form is aloofness and indifference to others, although most show an attachment on a simple level to parents or carers;

– Indifference to or dislike of being touched, held, or cuddled;

– Difficulty in forming relationships;

– In less severe forms, the individual passively accepts social contact, even showing some pleasure in this, though he or she does not make spontaneous approaches;

– Prefers to play alone


–  The development of speech and language may be abnormal, absent, or delayed;

–  Minimal reaction to verbal input and sometimes acts as though deaf;

–  Facial expressions and/or gestures may be unusual or absent;

–  Repetition of words, questions, or phrases, over and over again;

–  Words or phrases may be used incorrectly;

–  Production of speech may be unusual and a flat monotonous tone or inappropriate variations in tone are often noted;

–  Those who are verbal may be fascinated with words and word games, but do not use their vocabulary as a tool for social interaction and reciprocal communication;

–  Difficulties in starting and/or taking part in conversations.


– Imaginative play may be limited or poor, e.g. cannot play with a wooden block, as if it is a toy car;

– A tendency to focus on minor or trivial aspects of things in the environment, instead of having a full understanding of the meaning of the complete situation;

– May display a limited range of imaginative activities, which you may well find have been copied off the TV etc.;

– Pursues activities repetitively and cannot be influenced by suggestions of change;

– Play may appear complex, but close observation shows its rigidity and stereotyped pattern;

– Unusual habits such as rocking, spinning, finger-flicking, continual fiddling with objects, spinning objects, feeling textures, or arranging objects in lines or patterns, etc.;

– Inappropriate use of toys in play;

– Holding onto objects, e.g. carrying a piece of wool for the whole day;

– Noticeable physical over-activity or extreme under-activity;

– Tantrums may occur for no apparent reason;

– Changes in routine or environment, e.g. a change of route to the shops, or altering the position of furniture within the home, may cause distress;

– Interests and range of activities may be limited, e.g. only interested in puzzles;

– A small percentage of learners have abilities that are outstanding in relation to their overall functioning, e.g. exceptional memory in a specific field of interest.

 In addition to this “Triad of Impairments”, you may well observe the following additional features:-

– Little or no eye contact;

– No real fear of danger;

– Abnormalities in the development of cognitive skills, e.g. poor learning skills or resistance to normal teaching methods;

– Abnormalities of posture and motor behavior, e.g. poor balance;

– Poor gross and fine motor skills in some learners;

– Odd responses to sensory input, e.g. covering of ears;

– Sense of touch, taste, sight, hearing, and/or smell may be heightened or lowered;

– Bizarre eating patterns – food fads;

– Unusually high pain threshold;

– Crying or laughing for no apparent reason;

– Self-injurious behavior, e.g. head banging, scratching, biting;

– Abnormal sleep pattern.

– Sensory processing disorder has also been highlighted as one of the symptoms of autism spectrum disorder and as many as 90% of children with Autism Spectrum Disorder (ASD) demonstrate atypical sensory behaviors.


Children and adults with ASD usually have accompanying learning difficulties. The range of intellectual abilities amongst children with ASD is vast and the presence of additional disorders such as epilepsy, and sensory and intellectual impairments can also co-exist with ASD. It is also suggested that autism shares a genetic basis with several major psychiatric disorders, including attention deficit and hyperactivity disorder (ADHD), depression, bipolar disorder, anxiety, and schizophrenia, often resulting in over-diagnosis of these psychiatric problems due to overlap between autism symptoms and those associated with psychiatric disorders. Therefore, it is critical to receive accurate diagnoses of these conditions because medication or therapy to treat them may significantly improve autism symptoms and quality of life.


The American Academy of Pediatrics recommends that all children get screened for autism at their 18- and 24-month exams – and of course, whenever a parent or doctor has concerns. A parent can complete the Modified Checklist for Autism in Toddlers-Revised (M-CHAT-R™). It takes a few minutes to assess the likelihood of autism and the results can be shared with the doctor or pediatrician, as part of a complete and comprehensive assessment.

There is no single tool available to make a quick diagnosis of ASD. It is imperative that an in-depth developmental history be taken and that the individual be observed over a period of time in both structured and unstructured as well as familiar and unfamiliar situations. It is preferred that a concerned parent or caregiver consults with a developmental pediatrician, child psychiatrist, or pediatric neurologist.


Autism is often treated differently in adults than in children. Applied Behavior Analysis (ABA) and Cognitive Behavior Therapy (CBT) are just two of the therapies that can be used to help and manage children on the spectrum, and in some cases, adults. Far more research has gone into effective treatments for children with autism, but as the population of adults on the spectrum continues to rise, more studies are beginning to focus on the best ways to help.

Many researchers emphasize that the most effective interventions are those that can be adapted to an individual child. Children have specific developmental goals — related to language, say, or social skills — and start at various developmental levels. “Interventions are not one-size-fits-all,” says Lynn Koegel, clinical professor of psychiatry and behavioral sciences at Stanford University in California, who is one of the creators of PRT. Pivotal response treatment (PRT), is applied during play and specifically targets pivotal areas of development, such as motivation and self-management, rather than specific skills.

“We need more research into systemic barriers to diagnoses and medical approaches for autistic people, and research that incorporates autistic and neurodivergent perspectives on how to accommodate autistic patients” writes Shannon Des Roches Rosa, senior editor at Thinking Person’s Guide to Autism, who has a son on the autism spectrum. She stresses that “researchers should prioritize autistic perspectives when looking for guidance or considering direction” for treatment and management programmes.


Neurodiversity is the diverse spectrum of neurology where we all fall somewhere on the neurological spectrum. Some people are gifted, some are artistic, some don’t communicate verbally. The biggest thing to consider and be aware of, is that autism is also a spectrum, from those severely disabled to those who simply see the world differently. There is a large group of people who are neurotypical, and also many people who are neurodivergent. We are all different, we all fall somewhere on the wide neurodiversity spectrum, and we all deserve the same support and accommodations.

Article written by:

Dr. Philippa Fabbri

Education Consultant


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