What is autism? How common is it in the UAE?

 Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and early diagnosis/intervention and access to appropriate services/supports lead to significantly improved outcomes. Some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills’ and sensory sensitivities. Again, a person on the spectrum might follow many of these behaviors or just a few, or many others besides. The diagnosis of autism spectrum disorder is applied based on analysis of all behaviors and their severity. Incidence rates in the UAE compare to the rest of the world - about 1 percent of the world population has autism spectrum disorder. (CDC, 2014); 1 percent of the adult population of the United Kingdom has autism spectrum disorder.

What causes autism?

There is no known single cause for autism spectrum disorder, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in children with autism compared to in neurotypical children. Researchers do not know the exact cause of autism but are investigating a number of theories, including the links among heredity, genetics and medical problems.

In many families, there appears to be a pattern of autism or related disabilities, further supporting the theory that the disorder has a genetic basis. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single “trigger” that causes autism to develop.

Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development, resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances and exposure to chemicals.

Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including fragile X syndrome, tuberous sclerosis, congenital rubella syndrome and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism. 

When does autism tend to manifest itself in children and babies?

 At present, autism can’t be reliably diagnosed until around 2 years of age. However, parents often notice symptoms before then. In fact, analysis of videotapes from children’s first-birthday parties shows that signs of autism are already present for many children at that age, even when parents don’t become concerned until months or years later.

Is it possible that autism starts even earlier?We know that toxic exposures during pregnancy and complications associated with delivery can disrupt brain processes before birth and shortly afterwards. Mutations in the genes associated with autism can affect how the brain develops and functions, starting well before birth.

Even though the outward symptoms of autism may not be apparent immediately after birth, the underlying brain differences are accumulating.  Sometimes the brain can compensate to make up for the disrupted processes.  Eventually though, if the disruption was sufficiently severe, the compensatory processes are no longer enough, and symptoms emerge. 

This may likewise explain many cases of autistic regression, in which a young child seems to be developing normally, only to lose abilities, or regress, into autism. Perhaps the initial disruption in brain development continued worsening. Or perhaps the compensatory processes couldn’t keep up.

Given how complex the brain is, it can be very difficult to correct differences in brain development and function that start so early in life.  This is why treatment for autism needs to be so intensive, and why early diagnosis and treatment are so important.

What are the signs of autism to look for at the different stages of development for a baby, toddler and child?

  • No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
  • No babbling by 12 months
  • No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
  • No words by 16 months
  • No meaningful, two-word phrases (not including imitating or repeating) by 24 months
  • Any loss of speech, babbling or social skills at any age

What are the benefits of early diagnosis?

 Research has shown that early intervention can improve a child’s overall development. Children who receive autism-appropriate education and support at key developmental stages are more likely to gain essential social skills and react better in society. Essentially, early detection can provide an autistic child with the potential for a better life. Parents of autistic children can learn early on how to help their child improve mentally, emotionally, and physically throughout the developmental stages with assistance from specialists and organizations like ASDF.

Lastly, catching autism and working through it early also benefits parental relationships. The strain of caring for an autistic child can be an everyday challenge, but with early preparation and intervention, parents can prepare themselves for the road ahead emotionally and mentally.

How can autism be treated?

 Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs. Intervention can involve behavioral treatments, medicines or both. Many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors.

When and why is autism misdiagnosed?

 Nowadays the definition of ‘normal’ has become much narrower and some children are labelled with multiple diagnoses.  There is over diagnosis because children are more easily called abnormal compared to the past. Not every facet of autism as such is sufficient to give the diagnosis. The whole picture has to be judged.

What is the impact of an incorrect autism diagnosis? When might a parent suspect that their child’s autism diagnosis is incorrect?

What not every parent understands is that a diagnosis of ASD is a severe diagnosis that teachers, outside professionals, and the lay public still very much view as a serious, disabling condition. Applying a diagnosis of ASD can immediately classify your child in the mind of others as “impaired,” or “severely limited” which can then impact how they perceive and interact with your child. Others may then expect less from your child, or “talk down” to him or her, which your child then might internalize as a “self-fulfilling prophecy” where he or she then think him or herself as less capable or limited.

How can incorrect diagnoses of autism be avoided?

Using the proper tool and going to the expert. Several diagnostic instruments are available, apart from the DSM-IV-TR. Two are commonly used in autism research: the Autism Diagnostic Interview-Revised (ADI-R) is a semistructured parent interview, and the Autism Diagnostic Observation Schedule (ADOS) uses observation and interaction with the child. The Childhood Autism Rating Scale (CARS) is used widely in clinical environments to assess severity of autism based on observation of children.

Why is autism more common in little boys than little girls?

Statistics show that more men and boys than women and girls have a diagnosis of autism. Various studies, together with anecdotal evidence have come up with men/women ratios ranging from 2:1 to 16:1. Women and girls on the autism spectrum may present differently from men and boys, diagnostic questions should be altered to identify some women and girls with autism who might otherwise be missed. The diagnostic criteria for Asperger syndrome are based on the behavioral characteristics of men and boys, who are often more noticeably 'different' or disruptive than women and girls with the same underlying deficits.

What advice or reassurance would you give to a mother who is anxious about her child having autism?

  • Apart from the medical care and therapies that you may line up to help your son or daughter, there are simple, everyday things that make a difference:
  • Focus on the positive. Just like anyone else, children with autism spectrum disorder often respond well to positive reinforcement. That means when you praise them for the behaviors they’re doing well, it will make them (and you) feel good. Be specific, so that they know exactly what you liked about their behavior. Find ways to reward them, either with extra playtime or a small prize like a sticker. Also, as you would with anyone -- on the spectrum or not -- prize your child for who he or she is. As a parent, loving your child for who they are is key.
  • Stay consistent and on schedule. People on the spectrum like routines. Make sure they get consistent guidance and interaction, so they can practice what they learn from therapy.This can make learning new skills and behaviors easier, and help them apply their knowledge in different situations. Talk to their teachers and therapists and try to align on a consistent set of techniques and methods of interaction so you can bring what they’re learning home.
  • Put play on the schedule. Finding activities that seem like pure fun, and not more education or therapy, may help your child open up and connect with you.
  • Give it time. You’ll likely try a lot of different techniques, treatments, and approaches as you figure out what’s best for your child. Stay positive and try not to get discouraged if they don’t respond well to a particular method.
  • Take your child along for everyday activities. If your child’s behavior is unpredictable, you may feel like it’s easier not to expose them to certain situations. But when you take them on everyday errands like grocery shopping or a post office run, it may help them get them used to the world around them.
  • Get support. Whether online or face-to-face, support from other families, professionals, and friends can be a big help. Support groups can be a good way to share advice and information and to meet other parents dealing with similar challenges. Individual, marital, or family counseling can be helpful, too. Think about what might make your life a little easier, and ask for help.
  • Look into respite care. This is when another caregiver looks after your child for a period of time to give you a short break. You’ll need it, especially if your child has intense needs due to ASD. This can give you a chance to do things that restore your own health and that you enjoy, so that you come back home ready to help.

 

Dr Willem Van der Kamp is a certified neurologist and neurophysiologist at the German Neuroscience Center in Dubai with more than 30 years professional experience in treating children and adults with neurological disorders.