The autism puzzle
Mothers’ preserve
In the absence of any governmental facility, some mothers come together to provide a sanctuary for their autistic children.
In all her years of practising medicine, never once did Dr Naima Haider imagine that one day she’d be left stumped about her child’s health. For two years after his birth, her son Inam showed no signs of speaking, like the other kids did, or responding to his mother or any other way of communicating.
“Although I am a doctor, it was difficult for me to understand why my son would not respond to any of my prompts. He would remain busy in playing games and mobile phones,” says Dr Naima, a 33-year-old ophthalmologist who works at a major hospital in Rawalpindi. “I observed that he never spoke like the other children even after he was two-years-old.”
As Dr Naima later understood, her child was different from the other children: now about four-and-a-half years old, Inam was an autistic child.
Autism or Autism Spectrum Disorder (ASD) refers to a group of complex disorders of brain development. These disorders manifest themselves in children from 18 months to three years of age. They present themselves as difficulties in social interaction, verbal and nonverbal communication, cognition and repetitive behaviour.
Panicked, Dr Naima and her family visited various government and private hospitals in Rawalpindi and Islamabad in search of medical help. They were met with the same answer everywhere: no hospital was equipped to deal with cases of autism.
As fate would have it, Dr Naima found help in two mothers who were in the same boat: Ghazal Nadeem and Bushra Suhaib, the director and executive director of the Autism Resource Centre (ARC), Rawalpindi.
“One of my friends told me about the ARC; I visited them in November 2013 to seek treatment for my child,” says Dr Naima. “My son has improved a lot during the last one-and-a-half years; he now likes to play with his elder sister, he also visits the park frequently to play with other kids.”
The ARC was set up as a dedicated facility for autistic children by Ghazal and Bushra, both from military families, since their children needed support and help was not available.
“I took the initiative to establish the ARC in Rawalpindi five years ago because two of my children were autistic,” says Ghazal, who teamed up with Bushra after learning that one of her children was autistic too. “There are 350,000 autistic children in Pakistan, according to a recent research of the ARC. One out of 66 children is autistic; this number is increasing with the passage of time.”
Ghazal and Bushra believed that the ARC would not just help them find support and solace, but would also be able to provide interventions for other families in need.
Today, the ARC is spread over two sites in Rawalpindi’s Westridge area. One campus is for children aged 18 months up to eight years. The second campus deals with nine to 14-year-olds. With a total capacity of 60 children across both campuses, the ARC operates in two shifts: 9am till noon, and noon till 3pm.
At each centre are two clinical psychologists, two developmental psychologists, and two special education experts. These staff members work with parents of autistic children, usually mothers, who accompany their child to the ARC and stay with them for the three-hour duration.
During these three hours, children are taken through four kinds of therapy exercises: applied behaviour (clinical psychologist plus mother), speech therapy (with the help of a speech therapist; mother not necessary), occupational therapy (activity-based interactions; mothers with them), and sensory therapy.
Throughout the process, there is great emphasis on training mothers to better handle the needs of their autistic child. It is for this reason that soon after their child is first accepted to the ARC, mothers begin receiving training on how to be better caregivers and the dos and don’ts involved. A second phase of training follows on the heels of the first one.
“We don’t allow depressed parents or mothers to work with autistic children. If a mother is depressed, we first provide her with counselling before letting her work with a child,” explains Ghazal. “But our internal research shows that mothers who have autistic children and who seek help for them don’t suffer as much depression as other mothers do. These mothers have a support network and become confident about dealing with their children’s issues.”
One such mother is Iram Abbas, who quit her teaching job to spend time with her four-year-old autistic son, Zain Abbas.
“I was in extreme depression because my son avoided interaction with children of his age group. I enrolled my son at the ARC in October last year while I also left my teaching job to spend time with him. The ARC then imparted training in Applied Behaviour Analysis (ABA) Therapist to mothers like me,” says Iram, a resident of Satellite Town, Rawalpindi.
Like Inam Haider, Zain Abbas spends around six hours every day at the ARC.
Another mother, 35-year-old Fouzia Adnan, has two children going to the ARC. Her experience has taught her that parents should not hesitate to seek help for their autistic children.
“Both my son and my daughter never responded to any calls or prompts; they both like to keep to themselves all the time. I consulted top psychiatrists in Pindi and Islamabad, but they told me that my kids will speak with the passage of time,” narrates Fouzia. “But since I was unable to send them to school due to their lack of communication skills, I fell into depression.”
But that was till they found the ARC; with a helpful nudge from her husband, the family landed at the centre about two years ago to seek help.
“For the past two years, my children have been visiting the ARC daily, and we work on their speech therapy. I recently enrolled my eight-year-old son Utbaan Adnan and six-year-old daughter Khola Adnan to the kindergarten section of a private school,” boasts Fouzia.
But such success stories are few and far between, in part because there are few autism facilities in the country, and in part, because of society’s attitude towards autism.
“We have dozens of children on our waiting list, but due to lack of resources, it is not possible to accommodate them all,” explains Ghazal. “The ARC runs on donations. We charge Rs21,000 per month, but sometimes it is difficult for all parents to pay this fixed amount. That’s why some parents are paying between five to six thousand rupees per month.”
The ARC director explained that the Applied Behaviour Analysis (ABA) Therapist training imparted to mothers of autistic children has been key in some of their successes. “Although some autistic children are trying to spend their lives like normal kids, there is a lack of awareness among society about how we need to behave with such children,” says Ghazal.
With the world marking the eighth annual World Autism Awareness Day on April 2, Ghazal reiterates her call for the government to take immediate steps and establish centres for autistic children. “The government should also launch an awareness campaign across the country, because parents from far-flung areas often believe that their children have been possessed by a spirit and visit shrines to seek treatment for them.”
Meanwhile, in another part of town, Saqib Akhtar was sitting alone on a bench in his classroom at the National Special Education Centre for Physically Handicapped Children. The clock had just struck two, and the school bell had just been sounded. Saqib’s classmates began shuffling to go home, but he did not budge.
Suddenly, Nasreen Akhtar, 38, a resident of Sector G-9/2 in Islamabad, reached the classroom to pick her son up.
“I have five children but Saqib is my only son who is suffering with some neurological disorder. That’s why he remains silent most of his time while he avoids playing with other children of his age group too,” says Nasreen.
She said that Saqib was first enrolled at a federal government school in Sector G-9, but his teacher suggested to her to enrol him in a school for special children. “You know, my son is not physically handicapped, but doctors are unable to identify the reasons for his remaining silent,” she says.
Nasreen returns home along with her son, leaving with only the hope that one day, her son Saqib will be able to speak up and call her ‘Ma,’ just like his other siblings did.
Irfan Haider is a Dawn.com correspondent in Islamabad. Connect with him on Twitter @IrfanHaiderr or write to him mihader321@gmail.com
Breaking the wall
Managing an autistic child brings inexorable change: there are ups and downs, there are setbacks and there is progress.
In all their family photographs, Little Anas looks like a handsome, healthy and happy baby boy. He cried and laughed at much the same things as his sister, three years elder, did. If there were any subtle signs of later problems, nobody was aware of them. It was only when he was a toddler that Anas’s parents started to worry.
Anas is the much-wanted and much-loved son of a well-adjusted and well-to-do family in Karachi. Unlike his sister, who had started to talk at 12 months, he did not say a word until he was much older. As he grew up, he seemed to become more and more different from other children of his age.
What upset his parents was that he did not seem to understand anything that was said to him. He did not look up when his name was called. He did not show any interest in listening to or looking at people speaking to him. When his mother came to pick him up, he never stretched out his arms, unlike his little cousin of the same age.
At first, nobody considered that Anas was anything but a very independent, self-sufficient child who was late in talking. It was the grandmother who insisted that Anas’ hearing be tested. Was Anas deaf? Perhaps deafness would explain not only why he did not speak, but why he seemed to be so much in a world of his own and took so little part in the world of others.
This line of explanation was cut short when Anas’ hearing was found to be normal. In fact, there was a variation in his audible responses. He was terribly frightened by the noise of the vacuum cleaner; he would scream hysterically and would not calm down. Eventually, the house was only cleaned when Anas was away. But on the other hand, Anas was always fascinated by the noise of the buses that passed by on the street.
Anas’ sister, from when she was 18 months, had revelled in playing ‘going to the shops’, ‘having tea’, ‘putting dollies to bed’, but Anas never did anything of the kind. He had a large collection of toy cars, but instead of playing with them in the way his little cousin did, he was interested only in placing them in long straight lines and in closely observing the spinning of the wheels. He never responded to other children coming to play with him.
Sometime in Anas’ third year, his parents knew that something must be very wrong. He still did not show any sign of language and in so many respects, he seemed to be left behind by other children of his age. However, he loved music and endlessly listened to new Indian songs and advertising jingles too.
His parents had heard of autism, but had dismissed the idea because they thought to be autistic meant avoiding people and not showing any emotional responses. Anas, they had noticed, liked to be in the company of people. In fact, he preferred to be near his mother and sister, and was happiest when his father played rough-and-tumble games with him. Anas had outbursts of hilarity, and occasionally violent tantrums, although it was very hard to understand why he had them.
When Anas was three years old, he was diagnosed as autistic after undergoing lengthy interviews, observations and tests. On psychological tests involving language, Anas performed very poorly for his age, but on a test where he had to fit geometric shapes together, he performed exceedingly well. At home, he soon became a wizard at jigsaw puzzles and could even do them picture-side down. This skill in particular gave Anas’ mother hope that eventually he would surprise them all and turn out to be an unusually gifted child.
During the time when language and social skills normally develop rapidly, between the ages of three and five, Anas learned these skills extremely slowly and he and his family had to undergo their most difficult period. He was very hard to manage — especially out of the home and out of his routine.
Strangers openly commented that the child must be hopelessly spoiled. However, Anas was allowed to do what he liked only because it seemed quite impossible to make him fit in with others’ wishes or to interrupt his routines. Severe tantrums were still common.
At last, Anas started to speak. But language did not open the door to communication as everyone had hoped would surely happen. Strangely, he often echoed what other people said. Anas was quite indifferent to make-believe games or simple group activities.
Anas was very set in his ways and it was extremely tricky to cut his hair, which had to be done when he was asleep. He was often seen flapping his hands and looking at them from the corner of his eyes. Sometimes, in a shop or on the street, he made a high-pitched noise and jumped wildly up and down for no plausible reason. It was difficult to travel with him anywhere.
The family still adapted to him and his ways. They tolerated what could not be changed, but teaching little Anas the common life skills such as dressing, eating, washing was a long and tiring struggle. Eventually, with much perseverance, progress was made.
Anas became much easier to manage after his fifth birthday. His language showed marked improvement, though he continued to echo phrases and to use them inappropriately. He made excellent progress at CFA (a mother-child programme) a special school only for children and adults with autism. He learned to master many skills, including reading, writing and arithmetic. His drawings were remarkably skilful.
At age 10, Anas was tested by a psychologist and was said to score in the normal range of intelligence on non-verbal tests. On verbal tests, he scored in the range of mild retardation.
Given his abilities and his educational achievements, the family was optimistic about Anas’ progress. Other people now commented on how ‘sociable’ Anas had become. He was not at all shy and often approached visitors to the house or the school, asking their names.
Although often he was rather too talkative, in a repetitive sort of way (today is Monday, yesterday was Sunday, tomorrow is Tuesday). Once he was quite badly injured after a fall, he never told anyone about it, and his mother was horrified when she discovered the blood on the clothes as she put them in the washing machine.
After leaving school, Anas lived at home. Although he could read very well, he did not read for pleasure. He was often restless and he endlessly pestered other with repetitive talk. He liked to watch television, and was glad to sit in front of the set with others for company. He knew the character’s names and actors of many Indian movies, Pak dramas, Newscasters, reporters, etc. He liked the ‘goodies’ to be good and the ‘baddies’ to be bad, but was confused if somebody was a bit of both.
Anas is now 20 years old and continues to live at home. He leads a simple life. He helps with the filing and tea making with his mother; he also helps with the gardening. Every day he paces round the lawn on exactly the same track. Adulthood for Anas is not a stage of maturity, but rather permanent immaturity. This seems to suit his youthful appearance. His voice remains loud and peculiar, his gait is stiff and ungainly, and his posture slouched. The independent living that his parents had hoped for seems out of reach.
Anas family is aware that there are other autistic individuals who have few practical skills, who are difficult to cope with, and who have remained mute forever. They appreciate that Anas has come a long way from the days when he looked ‘through people’ and would not speak at all. But they are worried what will happen to him when they can no longer look after him. They fear that in an indifferent environment, he could fall into neglect or become prey to exploitation.
Taking control: my journey of self-advocacy
In a world where few are championing their cause, some autistic people speak up for themselves and those who suffer in silence
Since 2006, I am Pakistan’s first and perhaps still the only self-advocate for the Autism Spectrum. I was diagnosed with Asperger’s Syndrome later in life, at age 25, which allowed me to work towards minimising my sensory and communication issues. This journey as the first self-advocate in my country eventually led me to become the first self-advocate from South Asia, speaking at the United Nations in New York on April 2, 2013, exactly two years ago.
But while much of my journey was about discovering myself, there was much that I learnt about my country and my people when I began helping others through autism advocacy.
My personal story and history is directly connected to the greater adoption of technology in South Asia, in the context of reducing costs, spreading education, inclusion and awareness. I was born in Karachi, Pakistan and have lived in the city by the sea my whole life, apart from the two years when I left to pursue graduate studies in Boston, United States through the Fulbright Scholarship.
I had severe dyscalculia (math problems), echolalia (repeating things without understanding their meaning), lack of eye contact, no friends (other than two cousins who I met at family events), hyperactivity (climbing trees and jumping on beds and couches to the point of breaking them), fear of hair cutting (due to cold metal scissors), aversion to taking baths (due to water that was too hot or too cold), cutting nails (due to sensitive skin underneath fingernails) and various quirks that I now know as traits of Asperger’s Syndrome or higher functioning autism.
Since I was the first self-advocate from Pakistan, my role-models were self-advocates in the United States and United Kingdom, who were writing their life stories and solutions in books, giving lectures at conferences that would be uploaded online, and being interviewed on radio, magazines and television programmes.
For the first few years, there was simply too much information to filter and make sense of, but over time, interviews of self-advocates allowed me to apply things that worked for others. If you are taking care of a person on the spectrum, it is a life-long learning process as no one has all the answers, and there is a lot of trial and error.
There is more free-content online than paid content, most of it is not good in quality so asking another parent or expert online to recommend you to very specific videos or presentations for your specific questions tends to save time, energy and effort.
A lot has happened in Pakistan since 2006, when I started advocating and spreading awareness through my TV, radio and newspaper interviews about the symptoms and challenges of Autism. Today, there are small pockets of education and cooperation in all major cities of Pakistan —Karachi, Lahore, Islamabad, Quetta and Peshawar — that are centred around free autism resource centres that are run inside special education schools and hospitals.
Then there is an online conversation, which is developing a community around autism: parents, educators and researchers exchange notes through the free online forum of the Pakistan Autism Meetup group, setup online in 2003 by parent Saira Salman. The meetup website is where I first met parent Rukhsana Shah, who runs the RAMAQ Centre for Autism, which will become active next week, and is supported by the Mahvash & Jahangir Siddiqui Foundation.
The Ma Ayesha Centre in Karachi was a central meeting place where parents first arrived to share tips and advice. This is where I first met parents of a son with autism, Dr Maroof and his wife Roohi, who completed a diploma in Autism Education in India and setup the Karachi Centre for Autism. This is where I first met parent Irum Rizwan, who trains special educators and advises doctors at the Dow University Hospital in Karachi.
When I started my journey of self-advocacy, there was little knowledge or awareness of autism, not just in Pakistan but in our region. At the first South Asian Autism conference in Delhi (2008), for example, I was speaking about some of the “unconventional” strategies that I had used to help minimise my issues.
It was here that I first learnt about South Asian efforts for autism awareness and support on governmental level as well as political leaders who had started working together in 2007 towards regional autism awareness and support.
Five years on, when I was at the UN in 2013, I saw a presentation on the advocacy that has happened since in Bangladesh through Saima Wazed Hosain, the daughter of Sheikh Hasina Wajid. I have seen first ladies of many countries around the world come together to work for Autism awareness; but Pakistan always seems to go missing from such endeavours.
Through my conference presentations in Bangladesh and India, I was able to visit their leading schools for children on the Autism spectrum. Just like Pakistan, all of them were started by parents of children who did not find adequately trained professionals in their cities. They taught themselves and helped their children. This led them to becoming special educators and helping other families and children in their region.
But there exists another trend among South Asian families that deal with autism — of packing up and leaving for a country in the West, since they believe that they’d be able to find better support there.
Contrary to popular belief, however, the western model of inclusion is far from perfect as most parents have to rely on incredibly expensive interventions which are paid through insurance claims that take an average of two to three years due to massive demand. Long waiting lists of parents as well as expensive patented systems (a consequence of capitalism) has led to a fragmented and broken system for autism education in America, with massive variation based on what state and city parents live in.
In such an environment, there is a massive global movement of western educators who travel to developing countries around the world (as well as in South Asia), slowly training educators through specific goal-based workshops, which are now slowly moving online (a consequence of cheap mobile phones, tablets, internet and apps).
This is highly relevant, as there have been many cases of Pakistani parents of children with Autism being denied immigration to countries such as Canada, due to the high cost of education such children will incur abroad.
Instead of parents trying to migrate abroad, Pakistan needs government and private philanthropic support to train existing educators. Based on published scientific research, Universal Design (as advocated by UNESCO and INCLUSION International) shows that when we design and create places and tools and facilities for those with disabilities, we create an inclusive system for everyone.
Unfortunately, at every international autism advocacy event where I have represented Pakistan, I did not find others, specifically from the government, to champion the cause of autism awareness. This is despite a plethora of interviews and stories of autistic children that have started appearing on cable television. The government is mum, its support for autistic people is missing.
There have not been any epidemiology studies for autism in Pakistan. Due to societal norms, parents hide their children at home till the day that they cannot take care of them as adults with autism, which is when some of them seek help from a special education centre. The internet and awareness among educated parents has made a difference over the years, but the most progress is made when children are diagnosed at a younger age (as young as the age of two) and early educational intervention starts during formative years.
By comparison, in the US and UK, the numbers are as high as one in 88 children being on the Autism spectrum, and in countries like South Korea, the rates are even higher. On the sidelines of the Pensacola Florida Autism conference last year, Eaustacia Cutler, the mother of famed Autism self-advocate Dr Temple Grandin, argued that there were simply not many doctors or researchers who understood autism well enough some 40 years ago, but things had improved since then.
Eaustacia told me that she did not listen to the advice of doctors to institutionalise her daughter Temple, and instead took her to some of the world’s leading special needs researchers at the Boston Children’s Hospital. She said that Temple was a child of privilege, born to a highly educated and wealthy family. This may be why Temple is probably the first ever case of a person on the spectrum improving over time to become a self-advocate.
The Western libertarian social system enables and encourages individualism; their ultimate goal is for a person with a disability label to reclaim some form of “independence” and be able to move toward an “independent” living system.
This is very different from South Asia’s family/communal living ecosystem premised in thousands of years of social support and practices. We need to have more studies and support for communal living, sustainable housing, environmentally friendly work environments where people on the spectrum can contribute to society.
Our goals must include working with countries across our region, we share language and thousands of years of cultural practices. Just as a western individualism or independent living model was tested and developed by the developed world, we need to create our own inclusive communal model, and scale it for the entire region.
Two months ago, during February this year, I spoke at the Action for Autism (AFA)-Delhi’s South Asian Autism conference after a gap of seven years. The convention brought together researchers and practitioners who shared documentaries of local projects.
This must continue, beyond the annual conference model.
If our abstracts, lectures (audio and/or video) as well as slides can be uploaded to journals and Autism education and advocacy websites, others in our cities will benefit. While a truly inclusive linguistic system is not a reality, quality materials have been translated to local regional languages. Technology can be used to automate much of these cost-intensive processes.
Local researchers must try to work with local doctors and people on the autism spectrum, since our problems are unique given our South Asian culture and regional dynamics. We need a South Asian network of self-advocates, including parents as well as those on the spectrum who want to share their experiences.
Our numbers continue to grow and there are people around the world who are ready and willing to help us achieve success and stronger communities. Before we can advocate for all of us, we must first advocate for ourselves, share our own stories online, on TV channels, on radio, on newspapers, in books and publications. I have spread awareness and put most of my videos and advice online, this is how people around the world found me and educated me through workshops and conferences.
We will all grow old and become disabled, we may be unable to move freely or take part in society without help from others. I hope it will not take that long, as children with autism will grow up to be adults with autism. They have unique gifts, talents and abilities that emerge once their unique sensory and communication challenges get accommodations.
An inclusive Pakistan is a better Pakistan, one which we all aspire to live in. Tolerance of the “other”, the difference, the inclusion that we all want to achieve, begins by including those with “differences” into an inclusive society, educational and professional system. I have met adults with Autism in the US (Stephen Shore, Temple Grandin, Anita Lesko, Jennifer O Toole, Neal Katz and others) who continue to contribute to their country and the world, through educating others and sharing their knowledge. I hope they are joined by other self-advocates from Pakistan and South Asia, as we work towards a better inclusive world for our children.
The writer tweets @fazliazeem and runs the website www.autismpakistan.org to help autistic children and families. You can also connect with him at the Pakistan Autism Meetup group: http://www.meetup.com/autism-77/messages/boards/
Advocate’s advice
What should you be doing if you are a parent of an autistic child?
Make an updated professional profile on Facebook, LinkedIn and Twitter, and add or follow every major researcher, self-advocate or autism educator that you keep hearing or reading about in your media feeds. Social media allows us to connect directly with international experts; even if you don’t ask them a direct question, follow their posts and read what they are saying as you will be learning for free from experts.
Attend autism training workshops, conferences and lectures in your city and country as much as you are able to. Invite other like-minded parents and educators and make sure you share and give a presentation to your local autism network if you have had attended a conference or a lecture from an expert from outside our region or country. When we share and teach, we learn and master technical subjects, which give us the vocabulary needed to be effective self-advocates for ourselves and those that we are supporting.
Encourage hobbies and specialised interests, these lead to fun pastime activities, mastery and eventually vocational careers based on tangential skills. Hobbies allow subjects of social connectivity and a common topic to share and exchange with others.
Conversation can be taught, so can social interaction, if done step by step and through practice and adequate research (such as watching conversation in comedy programmes, to study humour).
Eye contact can be improved by looking at your own eyes in the mirror and practicing three to four line summary descriptions about who you are, what you do, and your interests and hobbies. This practice leads to confidence when introducing yourself to a stranger or in a social setting.
Having adult supervision is positive reinforcement for learning social interaction, particularly in our south Asian environment with elder grandparents, cousins, siblings and hired help. Employees and helpers can be trained to support inclusion and facilitate communication inside the home. However, decision making and a semblance of independent choice is important to inculcate, starting by choosing what food to eat leading to choice of schedules, activities as well as hobbies.
I had pets at home, aquarium fish, parrots, cats and even some rarer animals (crabs, snails and turtles picked up from the beach, and the occasional goat). Understanding animal behaviour enabled me to form explanatory models for my interaction with people. Taking care of animals allowed me to understand rules, routines and work with sensory issues (smell).
I would recommend children and adults on the spectrum to observe animals in real life as well as through video.
I learnt a lot from computer games that allowed me to explore, take risks and have conversations with virtual characters. Limiting computer or game time is important due to inherent addiction that may arise over time. Tablets and technology are very good to facilitate communication. I highly recommend taking educational training to make animations, games and creative projects by using these tools as they are a great opportunity for vocational futures.
You are not alone, there are millions of parents and educators and self-advocates that will find out about Autism in the coming years, just as millions of us exist around the world, celebrating United Nations World Autism Awareness Day each year on April 2.
Published in Dawn, Sunday Magazine, April 5th, 2015
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