Autism speaks, it’s time to listen

Autism Spectrum Disorder (ASD) is a recognised disability in the western world, unfortunately it has yet to be acknowledged within Pakistan where only 4 categories are mentioned thus forth; visually impaired, physical disabilities, hearing impairment and MR (Mental Retardation).

However, there are no further categories within this entity of MR to delineate the extent and nature of intellectual deficit, subsequently no appropriate services could be put in place to help alleviate their difficulties. There is a stigma attached to the word disability predominantly mental within Pakistan, whether it is culturally or socially constructed is debatable, but it certainly prevails within the most modern realm of the elite society as well within the rural demographics of Pakistan.

Autism spectrum disorder (ASD) is a developmental disorder that effects communication and behavior. It has been called spectrum disorder because there is a variation in regards to the type and severity of symptoms people are faced with. It can be diagnosed at any age, being a developmental disorder, symptoms generally appear within the first two years of life.

According to the guide created by the American psychiatric association, called Diagnostic statistical manual of mental disorders (DSMS) used to diagnose mental disorders. People with ASD present with following difficulties:

Difficulty with communication and interaction across multiple contexts, Restricted interests as well as repetitive behavioral, hyper and hyposensitivity to sensory input like noise, taste, smell, pain and light.

People with ASD may also experience other associated problems called co morbidities such as anxiety, depression, sleep issues, learning disability, aggression and Attention Deficit Hyperactivity Disorder.

Many causes have been proposed but its theory of causation is still questionable. Research suggests that autism develops from combination of genetic and non-genetic or environmental influences.

Influences appear to increase the risk that the child will develop autism, however it is crucial to remember that increased risk is not necessarily the same as cause. There has been a dramatic increase in the number of children diagnosed with ASD since the 1980s, predominantly due to the increase in diagnostic practices and increased awareness. The latest figures quoted by Centre for Disease Control U.S 2018, are alarming and stands at 1 in 59 children being diagnosed with ASD with male to female ratio average stands at 4.3: 1. It is unclear whether prevalence has actually increased and as yet unknown environmental factors cannot be ruled out. It occurs in all racial, ethnic and socioeconomic groups.

Diagnosing ASD can be difficult as there are no diagnostic blood tests or scans. Early diagnosis will prove beneficial to those living with ASD as well as for their families. It can be detected at 18 months of age or even younger. Diagnosis at the age of 2 years by experienced professional can be considered reliable however many children unfortunately face delayed acceptance and diagnosis until a much older age. According to National Institute for Clinical Excellence (NICE) UK assessment must be carried out by more than one professional in order to reach a final complicit diagnosis. This assessment is generally led by Pediatrician with training and expertise in Neurodevelopment/Neurodisability and assisted by experienced Speech and Language Therapist, may be Clinical Psychologist if needed along with input from special need teachers especially for older children. Clinicians will seek information from parents and school depending on age of child on specific questionnaires, assessment from speech and language therapist and then use a specific diagnostics tool to finally conclude.

Currently there is no cure for ASD as no medications are available to treat the core symptoms of ASD.

However, medication are available to help alleviate related symptoms like, irritability, aggression, anxiety, mood swings, sleep issues, seizers and attention control. While therapies, some diets and other techniques all show promise for mitigating the effects of autism, researches have not yet come up with a cure for the disease. The main stay of management remains input from the therapist that should begin at the soonest for a better outcome. Depending on difficulty of the child, he/she would need help from Speech and Language Therapist, Occupational Therapist and play Therapist to work on their play and social skills. Applied Behavior Analysis is often used to encourage children with autism to increase useful behavior and decrease impairing behavior. Early intervention In ASD is imperative for effective propitious long term outcome.

Pre-clinical evidence highlights potential benefits of cellular therapy in ASD, however large scale trials will be needed to claim definite results. One such study that has been underway is pioneered by Joane Hertzberg at Duke University Carolina. Results are thus awaited.

World Autism awareness day falls on the 2nd of April each year, a day that goes by unnoticed by many whilst for others it marks a day of unification against the ailment that is autism spectrum disorder. Autism spectrum disorder is a phrase that is given voice and is constantly under the lime light in many developed countries, as time goes by it is far from deteriorating in number, yet it is still unobtrusive within Pakistan.

Unfortunately the number of children suffering from ASD is not known within Pakistan, however considering recent census and latest figures of 1 in 59 quoted from U.S, a rough calculation would give a staggering figure of 1.7 million children with this condition. When you take into account our country’s birth rate, every year is magnifying with thousands added. Unfortunately the vast majority of these children go undiagnosed or labelled Mental Retardation as an unprecedented sum of doctors are unaware and have difficulty contemplating what this neurological condition is including sadly Pediatrician. Thus almost all rural based and some urban based families resort to traditional healers or religious Pirs and if that doesn’t suffice then seclusion or even being chained is the only means of dealing with issue at hand.

Sadly only some major cities such as Islamabad, Karachi and Lahore may be couple more in Punjab have centers both in public and private sectors to provide services for the diagnosis and post diagnosis support to both children and their families with ASD. Because of ever increasing workload in public sector hospitals and ASD centers majority of these unfortunate parents fall prey to ridiculous fees charged privately. KP and AJK on the other hand is barren from compliance of any sort of center for ASD.

Pakistan certainly has shied away from acknowledging or even adhering to address ASD. One of the biggest challenges autism spectrum faces within Pakistan is the sheer lack of education as well as awareness of autism spectrum dwelling within all societal levels. There is urgent need for the government to invest in the national disability trust, and establish centers for diagnosis and post diagnosis support services, at least at divisional levels. The Pakistan pediatric association (PPA) have it upon themselves to raise awareness regarding ASD. The PPA has not been able to invest time and energy because of their pre occupation with prevention of killer conditions such as pneumonia, diarrhea and other infectious diseases. It is high time to take responsibility to foster efficacious programs catering to the awareness of ASD within their professional community, work for the establishing and strengthening of this specialty which may need adjustments to the curriculum. Lastly It is imperative to involve education sector and familiarize teachers, provide them with necessary training so they can expeditiously pick on the subtle features of this condition in school going children before they start struggling. This would foster a need based management that children with ASD require and reduction in discrimination which they face.

S Hashim Raza Professor of Pediatrics with expertise in Developmental disorders and Neurodisability PIMS Islamabad.

Zahra Raza Final year Mphil