Do you know that most children in Malaysia are labelled as Autism or Developmental Delays?
What are they and why delays happen?
Recently, I had the opportunities to meet many families during my workshops (I do it for free, of course) and visits to some non-governmental organisations (usually the smaller ones who are never even featured in any media). Surprising, almost 90% of all the families whom are having a special needs child tell me that their child has been diagnosed as developmental delays or Autism.
In this monthly article, I find the need to share with the readers on what is Developmental delay and why experienced doctors are giving conflicting opinions on diagnosis. I will not participate in the global debate of why more children seem to be diagnosed with delays, but will take a more informative approach to share on knowing what they are and why they happen.
Global Developmental Delays versus Developmental Delays
A child with a Global Developmental Delay (usually reversed for children below the chronological age of 5 and when severity cannot be assessed under DSM5) will have delays in all areas of development. Global delays usually include delays in cognitive skills as well as delays in other areas of development (gross motor, fine motor, language). It is usually caused by a static encephalopathy caused by a disorder before or near the time or birth. Developmental Delays can be described as delay(s) of specific areas of development, thus often children with genetic disorders, Autism and other medical conditions are also described as having developmental delays. Medical doctors often have little time to qualify children with delays thus diagnosis may be prematurely given. One key element I would like to highlight to readers – symptoms can be common among disorders and thus having a trans-disciplinary approach will be crucial in getting to know what we can do for our children.
Causes of global developmental delays
Causes of global delays include prematurity, cerebral malformations, chromosomal disorders, infections and progressive (may worsen with time) encephalopathies (metabolic diseases, hypothyroidism, neurocutaneous syndromes (neurofibromatosis, tuberous sclerosis), Rett syndrome, and hydrocephalus. Every day we are finding new ways to identify each cause and develop best practices for our children. Genetic research and testing is the most recent commercial approach in aiding us but the cost is still high, yet often only able to do specified disorders. Other causes of global developmental delays or developmental delays (specific area of development) may also due to post-natal factors like accidents, exposure to toxins, illnesses, and cultural disadvantages such as being raised in poor living conditions. It is important to have comprehensive fact-find with different experts or else, families may be missing out opportunities of intervention.
Ways to identify global developmental delays or developmental delays
Testing to look for the cause of a global developmental delay or delay(s) may include a head MRI or genetic testing. Parents are usually the first ones to think that there is a problem with their child's motor, social, and/or speech and language development, and this parental concern should be enough to initiate further evaluation by physician(s) or clinicians.
Some signs that your infant may not be meeting his normal motor milestones include not being able to bring his hands together by 4 months, not rolling over by 6 months, having head lag when pulled to a sitting position after 6 months, not sitting by himself without support by 8 months, not crawling by 12 months, and not walking by 15 months. Remember that mild delays in motor development can be normal, and there is a range during which these milestones are usually met, so your child may not meet each one at the same time as other children. Delayed motor development, with normal language skills, can be caused by a neuromuscular disorder or mild cerebral palsy.
A delay in fine motor skills in older children may be manifested by not being able to use a spoon or fork, tie his shoes, button his clothes, write his name, draw shapes, color inside the lines, or hold a pencil correctly at the age appropriate time, or by having poor handwriting. A delay in gross motor skills in older children may include not being able to ride a tricycle or bicycle, being clumsy, or not walking correctly. These milestones should be used as a general guideline to help identify infants that are at risk for having problems so that their development can be watched closely.
Newborns can localize a sound to their right or left side shortly after being born and will turn their head or look in the direction of a sound. This works best with loud noises when your baby is awake and alert, but they should also be able to hear soft sounds. They can also begin to smile spontaneously and in response to someone by 1 month. Infants learn to recognize their parents by 1-2 1/2 months. Infants can imitate speech sounds by 3-6 months.
Monosyllabic babbling, or making isolated sounds with vowels and consonants (ba, da, ga, goo, etc) usually begins by 4-8 months. Polysyllabic babbling, or repeating vowels and consonants (babababa, lalalalala, etc) usually begins by 5-9 months. Comprehending individual words (mommy, daddy, no) usually occurs by 6-10 months.
By 5-10 months, most infants can say mama/dada nonspecifically, using the words as more than just a label for his parents. Many infants can follow a one-step command with a gesture (for example, asking for an object and holding your hand out) by 6-9 months. He should be able to follow a one-step command without a gesture by 7-11 months. The correct use of mama/dada as a label for a parent usually occurs by 7-12 months. The first word (other than mama/dada) is usually spoken by 9-14 months.
By 10-15 months, he should be able to point to an object that he wants. Your child will be able to say 4-6 words (other than mama/dada and names of family members or pets) by 11-20 months. He should be able to follow a two-step command without a gesture by 14-21 months. Two word combinations or sentences are used by 18-22 months and can include phrases like 'Want milk', 'More juice', etc. A vocabulary spurt leading to a 50+ word vocabulary occurs by 16-24 months. Do remember that these suggestions are general and your child will be different. The red flag for most families should be if the child is somehow 12 - 18 months delayed. For global developmental delay, the child will demonstrate delays in all developmental areas. For developmental delay, usually only one or two areas are delayed.
What is next if we are suspicious?
Parents are usually the first ones to think that there is a problem with their child's motor, social, and/or speech and language development, and this parental concern should be enough to initiate further evaluation. In addition to a formal hearing test (for children with speech delays), neurological exam (which will look at your child's muscle tone, strength, reflexes, coordination, etc), and developmental assessment by their Pediatrician, children with developmental delays should be referred to an early childhood intervention program (for children under 3), so that an evaluation can be initiated and a treatment plan developed, including physical therapy, occupational therapy and possible speech therapy. He may also need a referral to a Pediatric Neurologist and/or a Developmental Pediatrician for further evaluation and treatment.
Often, I hear families having to wait in line for occupational therapy, speech therapy, educational therapy. Hot spots for certain physicians are another common sight where groupies encourage others to see. Talk to more people, see more opportunities and find out from everyone before accepting a diagnosis of Global Developmental Delay or Developmental Delay or any “labels”. Some will advocate that a “label” is not important, but my ending question is “What IF, IF you know what is IT, IT has best practices that can help your child BETTER?”
Prof. Dr. Eric Lim is the founder of Kits4Kids Foundation, a foundation that specializes in the education of special needs children. He also leads many international social enterprises around the world. A PhD in Educational Management, he also holds the Masters of Education and Bachelor of Special Education as well as Masters of Psychology, focusing on child psychology and counselling. Prof. Dr. Eric Lim is passionate towards helping as many people as he could in spreading the love for children and humanity.
Perhaps a lot of parents can understand a real condition of their beloved children.