Autism Awareness: an IPNA story
Every parent of a child who misses their developmental milestone is slightly anxious, worrying that their worst fear might come true, but autism is hardly an endemic to the 21st century.
Autism, a spectrum disorder, has always been present, but it was not properly comprehended, especially because of the lack of knowledge, and also, because most people suffering from autism look no different than any of us. The traits were simply over-looked, simplified and labelled as quirky behaviour that could not be managed.
EARLY INTERVENTION CHANGES THE SCENARIO
Dr Nahid Nabi, consultant neurologist, Institute of Paediatric Neurodisorder and Autism (IPNA) at Bangabandhu Sheikh Mujib Medical University (BSMMU) helped us understand better.
“Thanks to the media and all the broadcasting, today people are aware of the special condition, and more attentive to any sort of milestone delays. The best part is that people are now addressing the issue early on, and seeking intervention.”
Autism, as we know it, is a spectrum disorder, ranging from mild to higher-order anomaly. We sought special understanding of the stipulation and what parents of both ends of the spectrum could expect in the case of their children.
“Well, I just want to be very clear about another issue – not all communication disorder should be labelled as autism. And all children who miss their developmental milestones are not autistic. The term is slightly more complex than our common understanding,” expressed the doctor.
Referring to parents who work full time and outside home, she depicts their inability to spend quality time with the children, as a result of which, the children are exposed to inattentive caregivers or gadgets with zero interaction capability.
Consequently, these children get delayed in comprehension, interaction capability, and speech formation, and that is not autism; an autistic child will have many other symptoms in addition to speech delays, including not being able to socialise or directly look someone in the eye during any sort of communication.
According to the doctor, when parents fear their children are not growing up at a normal pace, they address doctors who take special tests.
“At 16 to 30 months, we take the Modified Checklist for Autism in Toddlers (MCHAT) survey, with 20 set questions. If the patient fails to meet the criteria and is highly suggestive of autism, we begin the intervention, but if they are in the mild to moderate spectrum, we train the parents with some early intervention tools and ask them to come again after the second birthday to take part in the tests again. Luckily, many of the children pass the tests with flying colours the second time, especially after intense early intervention by parents back home.
“On the other hand, if children still show some lacking, we do another assessment with DSM- 5, (a special set questionnaire). If any child fails to meet the criteria based on the survey, they are finally diagnosed with autism, and a treatment plan (autism management) is drawn up, different for every child,” portrays the child behaviour-disorder specialist.
The next question raised is the future prospect of the children acknowledged as autistic. According to the specialists, the mild to moderately autistic children, with appropriate and timely intervention, can lead a normal life with admission to mainstream schools. In the case of the higher-end disorders, daily living skills are taught, obsessions are managed so that they are able to live a near to normal life as much as possible.
INTERVENTION IS THE ONLY MEDICATION
“Behavioural disorders can only be managed through appropriate attention
and care — no amount of medication can cure that lacking.” This is what S.M. Fatema Ferdousy, psychological councillor at IPNA BSMMU, had to say about behavioural defects.
“Autism is a spectrum disorder that can be managed pretty well with early intervention and close attention by loved ones. When these special children come here, we train the parents and the caregivers regarding intervention and proper physical care of the children. These special children are referred to other therapists based on their shortcomings — some children walk late, and they are referred to physical therapists, some have speech delays and communication issues, for which speech therapists are assigned.
“Others have sensory processing disorders, and react abruptly to any sort of touching or noise stimulation. These special children are introduced to occupational therapists. Children with nutritional conditions or deficiencies are referred to nutritional therapies and so on.
Years of counselling and positive reinforcement help manage autism to a certain level that it becomes a regular part of life,” portrayed the psychologist.
What the therapist mentioned at the end of the meeting was very positive — “We are all, in some way or the other, within the spectrum. We all have our quirky behaviours, but if we can manage life perfectly without letting idiosyncrasies hamper our daily lives, there should be no problem at all.”
The red flags come on a bit early, but most of us find it hard to acknowledge, and sometimes, it might be confusing in its entirety, because many children develop skills in their own sweet time, and one child cannot be compared to another.
However, there's still a thumb rule and that pertains to cooing, crying, making gestures by the age of 3–6 months. After that, by the 12th month, children will start babbling. By the age of 1.5-2 years, a child should be able to pronounce at least two meaningful words and so on. If these speech milestones are not met, then an expert should be consulted.
“Speech therapy does not necessarily mean that we repetitively speak to the children, and they learn to reciprocate back! What we do is first assess every child and their level of perception. If they lack attention and listening skills, then we begin right at the base, working on their concentration skills first, then we focus on their play and interaction skills, which helps us build their receptive language, and the process goes on.
“Parents always worry about the speech (spoken language) delay of their children, but the receptive skills are more important. And these managements need to be done in time, as early as possible, to prevent the momentary impediment into becoming an irrecoverable disorder,” said Fowzia Haque, speech therapist at IPNA, BSMMU.
Nutrition is very important in the case of therapy. Nutritionists all over the world have noticed slight to moderate improvement in special conditions such as autism when confronted with the Gluten free – Casein Free (GFCF) diet.
“Yes that's true,” accepted Mahmudul Hassan, nutritionist at IPNA, BSMMU. “Even though the research is still a work-in-progress, I have personally noticed that in GFCF diet, special children become more attentive and calm. For some unknown reason, gluten and casein are not accepted by their tiny stomachs.
In the case of special children suffering from autism; gluten and casein cause the leaky-gut syndrome (poking a tiny hole through their intestines due to the presence of toxins that cannot be excreted out easily from their bodies), ultimately affecting the blood stream, and hence, the neurotransmitters in the brain.
Restricted diet, including GFCF (almond milk instead of cow's milk and rice instead of wheat or barley) helps some of the children become more alert and calm. But of course, every child has a different structure, and not one single method can be applied for everyone,” said the specialist.
WHAT IS IPNA?
Institute for Paediatric Neurodisorder and Autism is a government initiative to establish a nationwide Paediatric Neurodevelopment and Autism related management, training, and research institute in Bangladesh.
It is not only a centre that provides all the support necessary to children, with any sort of Neuro-disorder and Autism, including providing them with schooling support, but something much bigger. IPNA deals with developing manpower and awareness in every sector dealing with special disorders.
IPNA Autism School for special children began its journey in 2011, with only a handful of children. With trained teachers, this school caters to behavioural disorder management and exceptional schooling for special children building on their strengths and providing a better and inclusive environment for each them.
“From our school, we have shifted many to mainstream schools. We also train parents over here on Saturdays because it is certainly not possible take everyone in.
“From 2019, we have decided to begin an outlet of a mainstream school here at IPNA, and if and when any of our students are promoted to the next level, we shall transfer them to the in-house mainstream school,” said Sayeda Ali Shoma, the head teacher at IPNA school; located at Block E, 6th floor BSMMU.
The school is open for 5 days a week from 9AM to 1PM.
HOW IPNA HELPS?
IPNA began its journey as CNAC (Centre for Neurodevelopment and Autism in Children). It is now a pioneering institution that operates on a national level to provide services in the form of early detection and intervention. Additionally, the Institute disseminates disability/autism related knowledge and other essential skills to doctors, teachers and parents.
Dr Muzharul Mannan, Consultant Neurologist and Training Coordinator at IPNA, BSMMU spoke to us in detail about the scope of IPNA.
“Today we are dealing with different ministries of the government to disseminate information because
Everyone needs to know! People laugh when they hear we even train members of the police force, the detective branch and so many others. If you think a little deeply, you'd understand that on a daily basis, the police encounter people with autistic traits (assailants in crime scenes may suffer from the condition) and hence, they need awareness and skills on how to handle them properly.”
According to the specialist, IPNA also deals with research and development, including medical and social research.
“We are doing a lot of training for parents, teachers, professionals, specialists in NGOs, caregivers and there's many others working with us on this note, including Shuchona Foundation and ICDDR,B. We have a plan on developing special apps so that parents get all the information at one place and they do not have to travel long distances to confirm red flags.”
The future to autism management looks as promising as it sounds, and Dr Mannan explained why.
“We are hoping to provide online training from 2019. There are around 4,500 union health clinics countrywide; new mothers don't have to travel as far as Dhaka to learn about autism and the red flags. They can easily be trained on the identification, intervention and therapy, online. Since early intervention is highly necessary, we want everyone to know this, and internet is the easiest option to spread knowledge on a wider scale.
But we surely don't want the diagnosis to happen right then and there at the training centres, just the screening. Experts are then anticipated to refer them to the doctors at the nearest Shastho (health) complex. In case of any confusion, the patient will be sent to the district hospitals or nearby medical hospitals. This process will go on till proper decentralisation occurs regarding the social condition,” conveyed the specialist.
He said that the 'this does not concern me' attitude is absolutely wrong, adding, "If 15 lakh people are affected with the disease, amongst 15 crore, then of course everyone is related to autism, directly or indirectly, one way or the other. There's no way we can regard this as something not of our concern. We must know more about it, and we must spread the knowledge. With IPNA, we are trying to do just that – let people know and train them, what to do after they know!”
Autism, a complex neuro-developmental disorder that typically manifests during a child's first three years of life, impairs a person's ability to communicate and establish meaningful relationships. Symptoms can range from mild to moderate and severe. However, early intervention, using effective programmes and management sessions focusing on communication, social and cognitive skills, can definitely result in significant improvement.
Thus, the underlying thought is that delay is harmful and the earlier the detection and intervention, the better the management.
Photo: Bangabandhu Sheikh Mujib Medical University (BSMMU), Institute of Paediatric Neurodisorder and Autism (IPNA)
Special thanks to Prof Dr Shaheen Akhter, Director IPNA & Paediatric Neurology BSMMU and Emdadul Hoque Howlader, Media and Publication Officer, IPNA for arranging all the interviews and providing valuable insights to the write-up.