Autism and Mental Health

Paul Collins, author of the book “Not Even Wrong: A Father’s Journey into the Long History of Autism” said – “Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” 

Having a child diagnosed with autism can be baffling for any parent. Many are confused – “He has difficulty talking, but he understands everything, how can he have autism?”. Many are shocked or go into a denial – “How can it happen with me?” These days, with increased awareness, parents have started seeking help at an early stage. 

Diagnosis of Autism

According to the World Health Organization, one in every 160 children has Autism Spectrum Disorder. It is a developmental disorder that affects communication and behaviour and tends to persist throughout life. The International Classification of Diseases, 11^th edition (ICD-11), followed by the World Health Organization and Diagnostic and Statistical Manual of Mental Disorders, 5^th edition (DSM 5) define Autism Spectrum Disorder as:

• Persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication, and by a range of restricted, repetitive, and inflexible patterns of behaviour and interests.
• The onset of the disorder is usually in early childhood, but symptoms may not become apparent until social demands exceed limited capacities.
• Deficits cause impairment in personal, family, social, educational, occupational or other important areas of functioning. 

Both the diagnostic systems also mention variability in the presentation and severity of symptoms and hence the term “spectrum”. For example, a child may have little difficulty in speaking, but the speech may be monotonous and devoid of nuances. A second child may have co-morbid Mental Retardation, while another may have the high intellectual ability but poor social appropriateness (Remember Sheldon from Big Bang Theory). 

Autism Spectrum Disorder Simplified

The technical jargon cannot justify the variability seen in cases, and therefore it is essential for parents to understand what the diagnosis actually means and how they can raise a child who has been diagnosed with autism. 

• “Persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication…”
  • Speech difficulties (e.g., the child has not started saying one-two words even by age 3)
  • Speech may be present, but may lack modulation or sound robotic (e.g., telling good or bad news in a flat manner, without any emotional connotations) 
  • Abnormal speech patterns may be there (e.g., use of new, non-existent words or using a known word to mean something else – “neologism”)
  • In severe cases, speech may be absent and the child may just be making infantile noises (sounding like squeals of infants or animals) 
  • Difficulty in back-and-forth communication (e.g., may answer in monosyllables; does not know how to do small talk)
  • Poor understanding and expression of non-verbal communication (e.g., poor eye-to-eye contact; lack of facial expressions; do not understand facial expressions of others)
  • Difficult to engage the child – prefers solitary play. May only engage with one or two close family members. 
  • It may feel, at times, that everyone else in the room is “invisible” and the child is in “his/her own world”
  • Does not attempt to get attention from other people (e.g., children often seek appreciation if they have built something creative, but a child with autism would not seek that)
  • Does not respond to when called by name
  • Either does not show emotions; shows them inappropriately (e.g., may laugh when scolded) or shows excessive outbursts of emotions (e.g., getting over-excited for no apparent reasons or crying a lot even when scolded mildly).
  • Trouble in understanding another person’s point of view or their facial expression (e.g., may keep talking about their “favourite” subject without empathizing with other person’s interests). 
  • In small children, pretend-play is absent (e.g., being superheroes, playing ‘mummies and daddies’, playing shopping, tea‐parties etc.)
  • Restricted interests (e.g., may only like playing with cars, may only like one particular type of blanket, a particular type of food)

• And  a range of restricted, repetitive, and inflexible patterns of behaviour and interests 
  • Echolalia:- Repeating certain words, questions or last part of the question (e.g., “what’s your name?” and the child might say – “what’s your name?”) 
  • Repetitive motor behaviour (e.g., rocking back and forth, turning round and round, flapping hands, jumping)
  • Rigidity in schedules – isn’t very comfortable with changes.
  • Rarely sharing enjoyment of objects or activities – not pointing at objects. 
  • Sensory deficits:- too much or too less sensitive to light, noise, touch or temperature (e.g., squirms when touched, likes to smell every new object; the high threshold for pain)
  • Overly focused interests – too much interest in moving objects like cars or trains; focusing on part of the object rather than the whole)

• The onset of the disorder is usually in early childhood, but symptoms may not become apparent until social demands exceed limited capacities.
  • Since autism is a developmental disorder, the symptoms appear in early childhood (even before 2 years). 
  • However, they may properly manifest or may become noticeable later, e.g., when the child starts playschool and he/she is expected to socialize and learn.

• Deficits cause impairment in personal, family, social, educational, occupational or other important areas of functioning. 
• Difficulty in forming relationships with family or peers. May only be close to one-two family members.
• Difficulty in learning and therefore may lag behind academically 
• Difficulty finding or holding a job
• In moderate-severe cases, they may require assistance in day-to-day activities.

However, many individuals with Autism may have special strengths or savant abilities as well:

• Ability to learn details and retain them (Photographic memory) (PS: if anyone remembers the movie “Rain man” and the lead character’s ability to remember the entire telephone directory)
• Being a strong auditory and visual learner 
• May excel in Math, Science or Music

How Do I Know its Autism?

Autism is usually diagnosed by age 3 years when the signs and symptoms are becoming apparent. But in severe cases, it may be diagnosed before that age. Assessment is done in two phases. 

Phase 1: General Screening by the Paediatrician who would, after observing the child’s behaviour and taking a developmental history, assess for any neurological or sensory deficits and then would refer to a clinical psychologist for further assessment. 

Phase 2: The Clinical Psychologist would take a detailed history consisting of:

• Current Behavioural Issues
• Birth and Developmental History (e.g., any complications before, during or after birth; timelines of when the child started walking, talking, toilet-control etc.)
• Any medical or neurological complications
• Family History of medical, psychiatric or substance use and especially of Autism or Mental Retardation
• Age-appropriate skills for carrying out daily activities independently (e.g., eating, dressing, and toileting etc.)

He/she would also be simultaneously observing the child:

• The child’s ability to make eye-to-eye contact
• Engagement and Social Interactions with a clinician and family members
• Play activities
• Hyperactivity or repetitive speech or behaviour patterns
• Gait abnormality (e.g., walking on toes)

The detailed history and behaviour observation would aid the clinical psychologist in making the diagnosis and then further psychological assessments will be carried out:

• Psychological Tools for Diagnosis and Severity Assessment of Autism: Indian Scale for Assessment of Autism (ISAA); INCLEN Diagnostic Tool for Assessment of Autism; Modified Checklist for Autism in Toddlers (M-CHAT); Childhood Autism Rating Scale (CARS)
• Scales to diagnose or rule out Attention Deficit Hyperactivity Disorder: Child Behaviour Checklist (CBCL); Conners ADHD Rating Scale
• Scales for Assessment of Intellectual Functioning: Vineland Social Maturity Scale (VSMS); Developmental Screening Test (DST); Seguin Form Board Test (SFBT); Binet Kamat Test or Weschler Intelligence Scale for Children (in case of children above 6 years). 

The assessment also helps the psychologist in understanding the strengths of the child. Moreover, it would help the team in formulating a tailor-made plan for the child given his areas of deficits and abilities. 

What is the Role of Treatment?

Treatment or management should start as early as possible as it can significantly reduce an individual’s and the family’s difficulties and improve quality of life. There are no medicines that can “treat” or “reverse” autism. However, in certain cases, medications may be prescribed to manage additional emotional and behavioural issues such as aggression, repetitive or self-injurious behaviours, hyperactivity, anxiety or depression. 

The frontline management strategy, however, is Early Intervention (highly structured and intensive program) that is provided by a team consisting of individuals specifically trained in the management of autism – clinical psychologist, special educator, speech therapist, and occupational therapist. The team not only works with the child to teach social, communication and language skills; they also help the family to learn ways of managing the child as well as their own anxiety and burn-out. 

Myths and Misconceptions

• Autism is an illness, that is reversible: It is not an illness that is reversible. The brain of a child with autism works differently than other children and it stays like that. However, the person can be taught skills to adapt to their surroundings. 
• Autistic people cannot live a full life: Being autistic does not mean that the child would be a loner or a burden on everybody around. Most children with mild to moderate symptoms are able to lead a fulfilling life, with some initial support. 
• “If you have seen one child with autism, you have seen all children with autism”: It’s a spectrum just like a rainbow. Each child is different and each child has their strengths and difficulties. 
• “I am responsible for my child’s autism”: No-one knows what exactly causes autism. It may be genetic, but it is definitely not caused by bad parenting, vaccines, diet or infections. 
• An autistic child will have an intellectual disability or low intelligence: A study by Centre for Disease Control found that about 31% of children with autism have low intelligence IQ<70), but 44% have average to above-average intelligence (IQ>90)2. 
• Some treatments claim cure for autism: No, these are fake treatments. Be wary of any medicine, supplements, diet or interventions that offer “cure” for autism. 

Parenting A Child With Autism

Parenting is a skill that no person is “born with”. Each day with the child is a learning experience and more so if the child has been diagnosed with an autism spectrum disorder. As discussed, symptoms of autism are varied and it’s important for parents to know what to do or not to do while dealing with the child.

Communication Skills: One of the major deficits in children with autism has difficulty communicating, both verbal and non-verbal. Some of the tips while communicating with the child are:

• Speak slowly and clearly. Do not give too many messages at the same time (e.g., come here, sit on the table and eat your food and drink the milk”). 
• Take the child’s name, so that they know you are talking to them
• It’s a good idea to sit at the child’s level and talk directly -so that you have their attention
• Use gestures and pointing behaviour (e.g., Point to the glass when talking about water; wave your hand when saying “hi” or bye”; nod your head when saying “yes”)
• Build a connection between verbal and non-verbal behaviour (e.g. when you are happy and laughing, tell the child that you are happy and explain the reason in simple words)
• Do not try a conversation when its too noisy
• Use language that is less abstract. Avoid using irony, figurative language or sarcasm (e.g., phrases like “sleep like a log”; when something bad happens – “just what I needed today” can be confusing to the child)
• Give time to the child to process what you have said
• Use less of open-ended questions (e.g., tell me about your evening?) and more of specific questions (e.g., did you enjoy the game we played in the evening?)
• Build-in time for communication – if the child is unable to communicate his/her need, you may be tempted to help them with their day to day activities. However, this reduces opportunities to communicate and the child would not have a reason to talk. 
• Sing a song with them – pause in middle and see if they can sing the next part. Encourage them. 
• Give constant encouragement and feedback
• Create an opportunity for interaction – e.g., giving a small piece of biscuit and then waiting for them to ask for more. 

Behaviour Modification: Some of the difficult behaviour by children with autism include: repetitive behaviour, self-injurious behaviour, hyperactivity or meltdowns. Most of the time, there is a trigger for such behaviours as excessive sensory stimulation, anxiety, being in a new environment or feeling threatened. 

• Be aware of what usually cause behavioural issues and try to plan ahead
• Be calm yourself. If the child is having a meltdown, and you also start shouting. It would make things worse
• If you are worried about self-injurious behaviour, you can hold them gently and calm them down
• Making the child wear headphones or dimming lights may help to reduce the sensory overload and calm down the child.
• Make a schedule and structure for the child

Helping with Sleep: Some children with autism may have difficulty sleeping or may wake up several times at night. You can help the child by:

• Keeping a diary of how the child sleeps and also what triggers poor sleep
• Stick to the same bedtime routine
• Making sure the room is quiet and has less light/no light

Dealing with Sensory Issues: Children with autism may be over or under-stimulated by sensory stimuli, which affect their emotions and behaviours. They can also cause difficulties in a person’s life -e.g., they may not like going to movies or parties. Some of the sensory difficulties that the child with autism can experience and the tips for dealing with them can be:

• Sight
  • Objects may appear dark in the centre or periphery
  • Poor depth perception – clumsiness, difficulty playing fetch
  • Lights may appear too bright
  • More pleasurable to focus on a part of the object
• Sound
  • May not acknowledge certain sounds
  • May enjoy loud sounds or may get disturbed by even the slightest of noises
  • May be able to hear from only one ear
• Smell
  • May have no sense of smell (e.g., not being able to smell a flower)
  • May be highly sensitive to smell (e.g., may get disturbed when food is being cooked; hates certain perfumes)
• Touch
  • May have a high pain threshold (e.g., not crying even when hurt) or low pain threshold (e.g. flinches when touched)
  • May like to be held tightly
  • May like heavy object on him/her self or may only want soft objects (e.g., stuff toys)
  • Chews on everything
  • May have difficulty in brushing or getting hair combed
• Taste
  • Likes only certain kinds of food and wants the same dish every day
  • Might prefer non-edible objects like dirt, metal etc
  • Some flavours may appear too over-powering

Although, it’s not possible to control all sorts of sensory stimulation at all times. But once you are aware of the kind of sensory issues your child’s faces, you can help:

• Maintaining adequate lighting and sound for the child
• Eye-masks, headphones may help in reducing stimulation by light or noise
• Approaching the child from the front and letting them know that you would touch them
• Changing the texture of food to help the child enjoy it (e.g., puree the food)
• Introducing different textures slowly (e.g., different kinds of clothes)
• Allowing the child to complete some activities (e.g., brushing hair) 
• Allowing the child to wear comfortable clothes
• Helping the child play with rocking horse, swings, seesaws to reduce repetitive behaviours
• Helping child improve fine motor skills by colouring within lines or thread some beads (bigger beads that child would not eat)

Engaging the Child: In the busy world of today, many parents give mobiles or devices to the child so that the child can remain engaged. However, in my personal opinion, I have seen that the devices do engage the child, but it actually increases the autistic behaviour as it is a solitary activity. Therefore, the parent must find every opportunity to engage the child:

• Use their interests and toys rather than making them play what they don’t like (e.g., if they like lining up cars, you can hand the cars to them)
• Follow their lead, rather than directing them
• Make conversation while playing
• Give “high-interest” objects like balloons, bubbles etc. 
• Engage in the way the child likes so that he/she seeks you out when they want to play
• Let the child decide when they want to end the activity

Handling your own burnout: Parenting is stressful even under the best of circumstances, but for parents of children with autism, it can be exceptionally hard. According to one study, these parents are chronically stressed that puts them at higher risk for cancer and heart diseases³. Thus it is very important for parents to take care of their physical and psychological health:

• Maintaining a healthy lifestyle (adequate sleep, staying hydrated, eating nutritious food)
• Exercising regularly
• Having a “break” time away from the child (ren)  
• Do activities that you find pleasurable (e.g., reading, gardening)
• Meet friends/groups that are not connected to the child, so that you can unwind
• Ask for help directly and specifically (e.g., can you look after her for an hour when I go to the market?)
• Find time for marriage – often as parents, we forget that we also have spouses. It’s important to focus on marital relationship and find solace in each other
• Finding a support group. There are quite a few organizations in India that provide intervention for children with autism and the family. Here is a list of organization that provides help with autism:
  • Action for Autism – Delhi
  • CATCH – Bhubaneshwar
  • Communication DEALL – Several locations across India
  • Assisted Living for Autistic Adults (ALFAA) – Bengaluru
  • SNM Rehabilitation Centre – Jaipur
  • Umeed – Mumbai
  • Academy for Severe Handicaps and Autism (ASHA) – Bengaluru
  • Vatsalyam – Chennai
  • Tanay Foundation – Ahmedabad
  • We CAN – Chennai
  • Assam Autism Foundation 
  • Utkarsh – Patna
  • Aarambh Autism Centre- Aurangabad
  • Care 4 Autism – Secunderabad