Autism

Early Autism Recognition = Hope

| by Muslim Matters

This poster was featured only on the designer's portfolio page, and never made it to mainstream advertising. It was probably considered too raw.

Before we knew my son had autism, I thought no one in the world did what he did or acted the way he acted. He never spoke, he looked not at us, but through us, and when he was excited, he stood and flapped his hands. We used to wryly joke that if he had wings he would have flown away already. We knew something was wrong, but every doctor we took him too told us to wait, he would grow out of it. Some children do, but here’s the problem – some children don’t, and the later the diagnosis, the smaller the chance they have at recovery.

Having said that though, there’s more to diagnosis than simply taking your child to a pediatrician. When we took our son to his pediatrician and asked outright – Do you think Khalid has autism? The pediatrician asked, “Does he mind having his ears touched?”  We said no. ”Well then, he’s not autistic!”

This was the pediatrician’s assessment of a two-year-old who was completely non-verbal, cried when anyone laughed in his presence, woke up screaming every two hours through the night and banged his head against windows and walls when he was upset.  I met a mother just this week who told me a similar story.  Her pediatrician said that because he son liked to be hugged, he must not have autism.

What both of our pediatricians should have done was use the MCHAT, or Modified Checklist for Autism in Toddlers, which is a tool for screening children and determining which ones should be directed towards further assessment. Had our pediatrician done that, he would have seen my son score worryingly on 18 of the 22 questions, and we may have been pointed towards a diagnosis earlier.

Early recognition of autism can give a child a fighting chance against silence and a lifetime of dependence, and behaviour-based therapies, like ABA – Applied Behavioural Analysis – work best when therapists can take advantage of early childhood learning.  A child’s brain is almost entirely developed by the age of nine, and the most growth and opportunity for learning and retention happen within the early years. The earlier a child is diagnosed, the sooner they can begin receiving the 20+ hours of treatment a week that they require to help bridge the gap between themselves and their ‘normal,’ or neurotypical peers.

The actual diagnosis of autism is made by a clinical psychologist using a array of standardized tests, like the CARSGARS, and Vineland Adaptive Behavior Scale. Psychologists may further conduct to the ABLLS test to measure academic capabilities in a child where this test is relevant, but this is not a diagnostic tool so much as it is an indicator of a child’s academic abilities.

Even if you don’t have children, or definitely don’t have any children with autism, being able to spot it may mean crucial awareness for someone you meet. We were finally pushed to seek out a specialist when two sisters – mine and my husband’s – told us independently that they thought our son had most of the features of autism. My husband’s sister was a teacher working with special needs children, and my sister was a science journalist who had just written an article about autism.  If they hadn’t been familiar with the signs, they would never have been able to voice their informed concerns about our son’s well-being. If they hadn’t been educated, then they would have been just two more people in the group of well-intentioned but poorly informed people who told us, “Don’t worry, he’ll grow out of it…” or “Look at him, he looks normal.”

Children with autism, from the outside, do look completely normal. Unlike children with Down’s Syndrome or Cerebral Palsy, they aren’t set apart by physical characteristics. Additionally, no two children with autism will display the same set of characteristics, which further confuses an outsider.  I know of one little girl who can write but not read, and a little boy who can sing but not speak, and my own son who spins in circles until he falls down and seeks out skin-to-skin contact, even up the shirts of strangers in the mall. But there is a thread that binds these children under the umbrella of autism, and it has three strands. Children with autism generally have problems in three crucial areas of development —

  • Social interaction
  • Language
  • Behavior

The follow set of symptoms have been reprinted from the Mayo Clinic section on Autism, and the full version may be accessed here.

Symptoms

Some children show signs of autism in early infancy. Other children may develop normally for the first few months or years of life but then suddenly become withdrawn, become aggressive or lose language skills they’ve already acquired. Though each child with autism is likely to have a unique pattern of behavior, these are some common autism symptoms:

 

Social skills
  • Fails to respond to his or her name
  • Has poor eye contact
  • Appears not to hear you at times
  • Resists cuddling and holding
  • Appears unaware of others’ feelings
  • Seems to prefer playing alone — retreats into his or her “own world”
Language
  • Starts talking later than age 2, and has other developmental delays by 30 months
  • Loses previously acquired ability to say words or sentences
  • Doesn’t make eye contact when making requests
  • Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  • Can’t start a conversation or keep one going
  • May repeat words or phrases verbatim, but doesn’t understand how to use them
Behavior
  • Performs repetitive movements, such as rocking, spinning or hand-flapping
  • Develops specific routines or rituals
  • Becomes disturbed at the slightest change in routines or rituals
  • Moves constantly
  • May be fascinated by parts of an object, such as the spinning wheels of a toy car
  • May be unusually sensitive to light, sound and touch and yet oblivious to pain
When to see a doctor

Babies develop at their own pace, and many don’t follow exact timelines found in some parenting books. But children with autism usually show some signs of delayed development by 18 months. If you suspect that your child may have autism, discuss your concerns with your doctor. The earlier treatment begins, the more effective it will be.
Your doctor may recommend further developmental tests if your child:
  • Doesn’t babble or coo by 12 months
  • Doesn’t gesture — such as point or wave — by 12 months
  • Doesn’t say single words by 16 months
  • Doesn’t say two-word phrases by 24 months
  • Loses previously acquired language or social skills at any age

The more informed we are, as Muslims, as concerned siblings, neighbors, relatives and professionals, the more likely we are to guide parents to proper diagnosis and the help their children need. If you have read this article through to the end, and in the future, meet a mother who says she’s worried about her child, resist the temptation to give her reassurance. Instead, tell her about an article you read once, and dig it up again, or just google it, and send her the list of symptoms. Then, let her decide whether she needs to be worried or not. Uninformed reassurances only delay proper diagnosis, and delay acceptance of the child’s condition and subsequent needs. And you can assure the mother that Allah will never test her or her child with something beyond their abilities, but unless you’re a clinical psychologist with a pack of assessments in your pocket, you can’t reassure her that her child is fine.

Many parents, upon discovering the significance of their child’s diagnosis, will pass through phases similar to grieving – denial, bargaining, anger, and eventually acceptance. And in case you wonder how on earth bargaining happens, sometimes parents shop around for an expert who will tell them what they want to hear- that although their child lives in a bubble and does not speak or interact with the world around him, that he’s fine. Or that he just needs a little speech therapy. Or maybe some sort of herbal tonic. Or that his inability to comprehend simple instructions or complete a basic task is because he is spoiled by his mother or nanny, and a little tough love will set him straight. You’d be surprised how popular the ‘blame the caregiver’ approach can be, especially to relatives who, as I have been told by one mother, “…just don’t believe in your autism thing.”

Parents spend so many years being told ‘He’ll grow out of it, he’s fine!” that by the time they finally come to acceptance, they are escorting a non-verbal twelve year old in diapers to a center that tells him they’re too late for the early, intensive intervention that could have helped their child. And that, as a mother, is heart breaking.

There are cases when a child’s autism is so severe that their potential is accordingly limited. And then there are cases where their autism was moderate, or even mild, but their potential was lost due to years of denial. We can’t do anything about the first type of cases, but there’s a whole lot that can be done for the second.

Early recognition and treatment is a child’s strongest chance for recovery, and although it cannot yet be cured, behavioral and educational therapies can help offset learning delays and replace problem behaviors so effectively, and so smoothly, that a child looses their diagnosis because the symptoms of autism are no longer there. That is the goal, and you can help. As Muslims, we believe that God did not create any disease with its cure, and until it is discovered, we can pray for the parents and children, and keep our eyes open for opportunities to increase awareness.

May Allah increase us all in patience, and make us thankful for the blessings we take for granted, and increase our community in knowledge in all aspects of life, especially those that help others. Ameen.

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