Autism acceptance

Published Jun 18, 2012 04:05pm

Today, June 18, marks Autistic Pride Day which is about appreciating neurodiversity and accepting the Autism Spectrum Disorder (ASD) as a different behavioural state rather than a disease. According to the contemporary research, one out of 88 children is affected by autism, and boys are more susceptible to autism than girls. The research also proclaims that autism is more prevalent in children as compared to Aids, diabetes, cerebral palsy and even cancer.

In order to better understand people who are either, autistic or are dealing with autism, I decided to spend time with the only autistic child I know, and a friend who happens to be her mother.

“I want my daughter to live a normal and healthy life but every time I take her out to an amusement park or for a walk, she gets frightened. The reason why she does not want to go out and play is because most of the parents do not let their kids play with her, always thinking that she will become violent and attack them if some thing goes against her will.”

She admits that there were times when she prayed that the doctor’s diagnosis was flawed or that her child was just slow, however, once she realised how beautiful her child really is, she accepted her situation wholeheartedly. She narrated her experience as a series of highly discouraging lows to moments of exhilarating successes.

“She is beautiful and different from the rest of the kids and incredibly responsive towards me. I appreciate her because she is unique in her own way,” she added.

It is important to realise that autistic children are mentally healthy. In fact, some of them have a brilliant imagination and creative sense, whereas others can flourish to great academic heights. An autistic child reacts differently to external stimuli because he/she is unable to interact socially. Hence, we’re responsible of socially accommodating them so that they grow up to become healthy individuals.

Amina Siddiqui, speech and language therapist and also the Director of Ziauddin College of Speech and Language Therapy, very rightly called the segregation of autistic children as ‘criminal’ as it further deteriorates their confidence.

Pakistan is still amongst those countries in which the general population confuses ASD with other disorders such as Down Syndrome, Cerebral Palsy or mental retardation. It is imperative to state that the symptoms and condition of a child affected by ASD are very different from the other aforementioned disorders and should be addressed immediately.

“A child suffering from Autism Spectrum Disorder has definite symptoms, the most important being that an autistic child will never make eye contact. Generally, an 18-month-old child is able to communicate his/her needs by gesturing or pointing in a particular direction, however an autistic child is unable to do so,” said Siddiqui.

Now many children are shy and avoid social interaction, however, an autistic child will display unusual behaviour if found in a situation which disturbs his/her routine. The child will either cry uncontrollably or act nervous; however, they remain docile most of the time and do not harm anyone. An autistic child has other impediments also such as difficulty in paying attention and memorising.

“Parents should consult a doctor immediately if any of the specified signs are detected in a child. Generally the initial three years of a child’s life are very critical and we call this time period malleable. It is important to bring an autistic child to the doctor during these years because early detection and intervention can control and reverse the damage,” said Siddiqui.

A team of neuro-paediatricians, psychologists and speech therapists help in diagnosing children with autism. Once it is established that the child has autism, the therapy, which ranges from medical intervention to behavioural exercises to develop social skills and most importantly speech therapy, are used to treat the child.

Speech therapy plays a vital role in the development of an autistic child, who otherwise feels inadequate to communicate effectively. However, Siddiqui highlighted the dearth of qualified speech therapists in Pakistan and warned against the prevalence of unqualified speech therapists and their abundance in the country.

“It is important to understand that unqualified practitioners are unable to diagnose the actual cause of the problem and this could result in the loss of the crucial three-year period after which the damage becomes irreversible. The therapy has to be customised to the needs of different patients based on their respective ages and severity of the disorder. A quack is unable to assess that and ruins the life of a child who otherwise could go on to become an active and contributing member of society,” said Siddiqui.

It is also time to practise what other civilised societies practise across the globe which calls for developing measures to introduce academic integration. Academic integration works on the principles of letting autistic children mingle with normal children in schools.

“So far, very few schools have taken the initiative to build special units for autistic children. CAS and The Learning Tree are proactively taking measures to address this issue and are focusing on academic integration, however, more schools should provide autistic children with a platform to be introduced into mainstream education,” said Siddiqui.

Siddiqui said that integrating autistic children in mainstream education depends immensely on the severity scale of the disorder.

“Children on the borderline of the scale can be very well integrated into mainstream education system, whereas children at the other extreme might not be able to enjoy that privilege; however, they can certainly still be trained to become contributing members of society,” added Siddiqui.

Parents and relatives of children who are affected by autism also play an integral role in developing the social skills of such a child. The therapies will only show results if people around an autistic child are more understanding and spend time with their children by reiterating that it’s normal and healthy to be autistic. It is true that being a parent of an autistic child is more demanding a job, however, the therapies work wonders when the entire family assist the child in abridging the communication and social gap.

“Autism should not be regarded as a source of embarrassment. In fact it should be taken as blessing because these children are extremely gifted and to a certain extent all non-autistic people share certain traits of autism,” said a mother of an autistic child.

Autism is incurable; however, humane treatment, consideration, therapies and a happy childhood help autistic children to live a complete and meaningful life. The focus of parents, relatives, educationist and counsellors should be on appreciating and accepting the difference rather than changing it.


Faiza Mirza
The writer is a Reporter at Dawn.com


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Comments (33) (Closed)


indian housewife
Jun 20, 2012 04:52pm
Not true. Schools in India segregate children with ASD/ADHS/Dyslexia etc at nursery levels. If parents have awareness, one need not even have to wait until this stage. In public swimming pools, one can spot no. of special children who are given exercises to hone their eye-hand contact. For atleast last 20 years, this is practised in many leading/private schools. There are support groups in all major cities and good speech therapists and behaviour therapists well trained in teaching these special children. In fact, there is a heightened sense of awareness amongst Indian parents about these conditions these days which is a cause of concern. Although reasons are unknown, many believe high metal content in one's food, fast foods, late parenthood and uncontrolled BP/sugar levels in gestation period in the expecting mother could increase the chances. Suppose for 2-3 generations, the parentage is late and there is already dyslexia etc in the family tree, the chances are more. We have a little boy in the family with ASD & ADHD who is now progressing well with independent tutoring at home. Introduction of too many languages too early in high-risk cases could complicate matters. I am no doctor but a doctor told me, MMR vaccination sometimes could be triggering ASD in some babies by 1 year or so. Whatever the reason, its miserable life for both the parents and the affected children. With intensive 1-1 training, the kids could have a normal life but the delay in milestone developments will be noticeable. Ofcourse many regular schools shy from taking in ASD kids.
Omar Sial
Jun 19, 2012 09:58am
Well done Faiza.
shaz
Jun 18, 2012 02:03pm
Good
shaz
Jun 18, 2012 02:02pm
My son was diagnosed with Autism few years ago. We struggled to cope with his conditions - this included his behaviour, the social context that we were living with, his education and his future. Our life was miserable and in 2006 we left Pakistan and now are settled in the UK. Our lives including our son's life is so much better here because people are human here. My heart cries when I think what our country and its people did to us. We are all proud British citizens and are setting up a business here in the UK for our son and other Autistic people. Our son is a happy boy and is highly inclusive in this society. He loves music, swimming, cooking (his school brought out his talent) and surprisingly love meeting new people and love to socialise.
Raheel
Jun 18, 2012 02:52pm
There is almost No awareness in current society about this Problem. Parents leave this as rather different but normal behavior and these children then get more and more isolated. This article will help lots of people who read Dawn, but then these are only few compared to our society who hardly speaks / read English in numerous towns / cities. We really need to go out and create awareness in native language on level of towns, streets and in the different school ceremonies.
Nadeem Ayub
Jun 18, 2012 04:16pm
Good article for education in Pakistan
Nousheen
Jun 19, 2012 12:19pm
i love the article and i would like to add either govt or we as team, should try to make a point that autistaic kids should be in mainstream school. My daughter is a 12 year old autistic lady :-). I love her to the core, she is able to socialise, and loves her scooty and she is so sporty. I lived in pakistan , and trust me it depends upon PARENTS a lot how they feel being a parent of autistic kid, and i believe my positive attitude contributed a lot towards my daughter's confidence. I go with her everywhere, party, grocery, mall, park, parlour ,,, n trust me if anyone misbehave with child, he is messing with me.....and Allahumdulliah she is blessing. I hope govt should take action regarding kids in mainstream schools with shadow teachers.
shaz
Jun 18, 2012 10:50am
My son was diagnosed with Autism few years ago. We struggled to cope with his conditions - this included his behaviour, the social context that we were living with, his education and his future. Our life was miserable and in 2006 we left Pakistan and now are settled in the UK. Our lives including our son's life is so much better here because people are human here. My heart cries when I think what our country and its people did to us. We are all proud British citizens and are setting up a business here in the UK for our son and other Autistic people. Our son is a happy boy and is highly inclusive in this society. He loves music, swimming, cooking (his school brought out his talent) and surprisingly love meeting new people and love to socialise.
Kamran
Jun 18, 2012 05:39pm
I think this is a good article considering the audience it covers. Its media role to make ASD more public and develop an awareness in public. I live in UK and most of the common people know about ASD. That does not mean they all will behave differently with people with ASD but atleast know they are different. Looking back at people that I know and who were labelled as Mentally retarded in Pakistan, now i can understand that most of them were different, maybe with ASD spectrum but not 'mentally retarded'. But in the society where a normal sane person goes insane. I would not be surprised that people with ASD are labelled something different.
Atulya
Jun 19, 2012 12:33pm
North American or European countries do not discriminate against children with ASD. While services in the US are perhaps the most advanced they are still not adequate and most therapies are still in their early stages. There is no standardize treatment format. Each child on the spectrum is different and needs support in different areas. The problem with Autism treatment is that there are few autism experts but good area experts like speech therapists, OT, PT etc. Also the autism specific programs developed like ABA, Floortime, etc are not comprehensive and often contradictory, aimed at and more benificial to smaller groups within the spectrum. After our son's diagnosis we did extensive research on ASD and have developed a program based on his specific needs that is implemented by the area experts. While the child spends only a few hours with the therapists he is with you 24/7 and it is you that knows him best - the parents are the experts on their child's autism. Again as the therapists can only be there for a few hours we need to incorporate therapy in the child's regular life and make it part of his regular routine, focusing on the child's strengths to work on their weak areas. Our son was non verbal till age 5 but at 3 we realized that he had taught himself to read and loved numbers and letters - we used this strength to develop speech, communication and interaction. My wife has documented our experience on her blog floortimelitemama.com We got a lot of ideas and help form the experience of other parents around the globe.
Shahid
Jun 19, 2012 12:06pm
A comment has been posted for those in Islamabad/Rawalpindi. There is one centre in I-8/4 (St. 106) known to me though there could be more. The people over there should be able to guide you while staying in Pakistan
Rahul
Jun 18, 2012 12:07pm
I am amazed at the quality of this article, equally so because of it being posted in Pakistani newspaper. It was informative and extremely accurate. Good work.
raju
Jun 18, 2012 05:13pm
rahul, please dont pass any racial comments...what do you mean "pakistani paper" it shows your bias against pakistan... grow up man...
Nadeem Ayub
Jun 18, 2012 03:40pm
Excellent article. We should have good institute for Autism in Pakistan particulary in big city like Karachi. Our business people should come forward in building one. Its great cause. The total family get effected by Autism ecnomically and emotionally, there support is also very important These Austics inviduals were one of top world invidual who had not been only sucessful in business but due to there thinking style has changed the world, By all means austic people sholud be respected. The difference is they think different doesnot mean that there is something wrong.
Shahid
Jun 19, 2012 11:59am
There is a Speech therapy and Autism Support Centre in Islamabad with the name 'Step to Learn'. Ms. Kiran mentioned in Mr. Shaz's comments is probably the same woman who has poineered this centre more than a decade ago. It is located in I-8/4 (St. 106) with a branch in Westridge Rawalpindi. More people definitely need to come forward in all cities and public education is vital through various forums and channels. Good article Ms. Faiza to highlight an area which needs attention.
ZCSLT
Jun 19, 2012 05:29am
I am so proud of you Faiza, and yes Raheel is right. We people in Pakistan are responsible for working towards helping that section of our society that does not speak English, because fortunately for them most of us are definitely BILINGUAL. Spreading awareness is the first component in this sphere . . .Faiza is doing that . . . . It's the professionals that need to Team-up now. I feel sure the people of Pakistan will definitely live up to this expectation, Insha Allah, those that are within Pakistan along with those that are outside the country.
Rahul
Jun 19, 2012 12:53pm
Can the author please also write another article on Autistic tendencies which cannot be classified as Autism, like speech delay or learning difficuties. I guess as the Autism Spectrum states some may not be classical Autism and hence parents may find it very difficult to detect at early age, which is a KEY ingrident in the issue. Also a brief overall idea of the solutions for the problem.
Khalid
Jun 19, 2012 06:44am
I am also under going the same agony with two autistic kids. I need some advise on how to move out of this country.
irfan
Jun 19, 2012 06:48am
My son is also suffering from ASD he is responsive and express all his needs non verbally through pointing and has started speaking at some level. moreover he is going school in normal setting in a school in north nazimabad but with resource teacher. the article is very good. but do not speak of financial burden of remedial, therapies and resource teacher. moreover i work for a public sector bank. they clearly declined any support in this regard. Shaz can you elaborate what you are doing for these extremely talented and differently abled children. also if i am not wrong these children are inadmissible in Canada or America or other European countries. but definately they are pioneer in the treatment but we cant reach there.
Khalid
Jun 19, 2012 06:51am
I am surprised to read such an important article here. My son aging 10 years is Autistic but even his diagnosis took him 9 long years for the Good Doctors of Pakistan to Label him as such. I tried to get him educated in the so called top schools here but they just minted money without having any considerable knowledge. Even now it is very difficult for me to find some place to restart his grooming and like so many other parents intend taking him abroad for a better life. It may be affordable for me but i wonder how the poor kids will last up with.
Rahul
Jun 19, 2012 12:47pm
Its not racial, i am amazed that i could not find any Indian newspaper or journalist on WEB could post such an article, may be i have missed when this posted it on TOI or REDIFF which i frequent. Oh now i am saying something against Indians, my name will give u an indication possibly if i am a white or brown !!
shaz
Jun 19, 2012 08:07am
Irfan you are right. Australia and Canada will not allow you to immigrate. I do not know about others. UK does, I know two more families who have recently migrated to the UK. My son had no speech till the age of 5/6. When we were in Pakistan, our son went through a one-on-one extensive therapy program. We found this amazing girl - Kiran who was a speech therapist. She worked hard with our son. We were in Islamabad then. http://www.specialisternescotland.org is one company who hires software people with Autism. There are other examples too. We are going into confectionery business and for that we recently hired an Autistic girl who will be developing the web site. She is very enthusiastic about it. Later, we will hire more. Actually, my wife is starting up that business, I am on sideline.
abid.z.khan
Jun 19, 2012 09:46am
my son Ali was diagnosed as autistic at the age of twelve.He is now tenty nine years old.i would be obliged if someone can tell me a place where he can learn and live.He says words and cannot converse fully
zeshanadil
Jun 20, 2012 01:06am
I agree that knowledge about ASD is still unknown in Pakistan. I am in Singapore and my son was identified as autistic at the age of 3.5. It was heart throbing and my beautiful life turned into a tense living. Fortunately I had resources available in Singapore in the form of behavior, social, occupational and speech therapy ... After I realized the problem me and my wife put a desperate efforts to make things right .. Alhmadulilah at the age of 4.5 he is 70% recovered and he is coming to normal life fast. The biggest problem in Pakistan is lack of knowledge and discrimination by the society towards such kids... My email Zeeshan_fca@hotmail.com. I ll be happy to share my experience and provide guidance to the extent possible if any parents want to inquire. May Allah protect us all from miseries
zeshanadil
Jun 20, 2012 01:31am
agree that knowledge about ASD is still unknown in Pakistan. I am in Singapore and my son was identified as autistic at the age of 3.5. It was heart throbing and my beautiful life turned into a tense living. Fortunately I had resources available in Singapore in the form of behavior, social, occupational and speech therapy ... After I realized the problem me and my wife put a desperate efforts to make things right .. Alhmadulilah at the age of 4.5 he is 70% recovered and he is coming to normal life fast. The biggest problem in Pakistan is lack of knowledge and discrimination by the society towards such kids... My email Zeeshan_fca@hotmail.com. I ll be happy to share my experience and provide guidance to the extent possible if any parents want to inquire. May Allah protect us all from miseries
zeshanadil
Jun 20, 2012 01:33am
I agree - I wanted to go back to pakistan but I can go back paksitan just because I know that I wont have neccessary resources available in pakistan and moreover most of the people around me will grow troubles
romasa
Jun 20, 2012 06:55am
Written so thoughtfully loveed it :) i aswel have a cousin suffering from autism he's about 7 or 8 and he's so talented that even some times we found our selves in deep thinking that is he really an autistic child.. he understands everything and he also interacts socially.. INDEED he's unique and is a greatest gift of ALLAH ALMIGHTY, parents should play a vital and a counselling role in these situation rather than cursing thier fate :))
Ayesha
Jun 20, 2012 09:09am
Another thing which needs to be mentioned that these children can suffer from 'meltdowns' due to sensory overload. These usually happen when in safe environment and can be very distressing for the parents and siblings as the person with autism can become very angry or violent and it is due to inability to understand the world around them in the same as a typically developing child.So may be after a stressful day at school or outing into a noisy place or something out of their routine. For the parents in Pakistan I hope they are aware of wonderful online groups which are available and make use of them as that is the biggest support possible to be able to discuss your issues. As a mother of a child with disability I always find it disheartening how 'retard' word is still in use in our culture to the extent that even special needs school s doing wonderful work use it. I hope responsible newspaers likes Dawn would be more sensitive to the use of correct language.
ilyas
Jun 20, 2012 09:32am
Anyone susupecting ASD must ensure that he see more than one specialist. In Pakistan, experts of this field may not be that expert really. You may find years later that your child was misdiagnosed. Do see them but do follow the subject yourself on internet. Its a long exercise but your child deserve this. Proper daignosis and treatment can make a difference that one cant even imagine at the start. Its very unfortunate that in our intolerant society is selfish also and make life miserable for such people and their loved ones. Interesting fact is that while they make fun of them they dont realize they may be suffering from similar disorder or disease of varying degree that they are not aware of.
zeshanadil
Jun 21, 2012 01:24am
Illyas- you hit the nail. It takes a lot of struggle and trial to find the right therapist. The quality, expertise and experience differs. Most importantly the therapists tend to teach the child what they have learned while the child's problem may be totally different. It happened with me as well and after dropping out 3 therapy centers I am finally working with another 2. Autism is not something that has common characterstics across the board though it's true for basic issues. But every autistic child is different in terms of intensity of different problems and he may have his unique weeknesses and strengths..There are many issues a child may be facing like language which is dealt with Speach therapists... Gross motor skills, fine motor skills and sensory issues which is dealt by an occupational therapist ... Social interaction and behavior problems which require social therapy... It requires a careful experimentation with the child that what methodology works on him best e.g ABA therapy, one to one, social groups, music or arts therapy.. I am not trying to make it complex but the honest truth is that it's a complex issue but trust me the problem is curable.. It just need significant amount of effort and unfortunately money as well.
indian housewife
Jun 21, 2012 05:24pm
why should anyone with autistic kids want to leave the homebase? as someone who is watching a related autistic kid growing up, i can suggest you the following: don't allow the kid a single moment alone to dwell in its own lonely world.. non-stop interaction is a must even if it could be tiring for parents/teachers/others. normal school setting is fine if your child can adjust to the environs. but academically, one-to-one coaching is a must if you want results. speech and behaviour/occupational therapy go a long way in speeding up your child's achieving the growth milestones. put the child in swimming - because it hones eye-hand co-ordination. for that matter any activity that ensures eye-hand co-ordination is best like for instance learning of musical instruments. i wish your child good luck and the parents, PATIENCE. lots of it. if you have financial constraints, you can go for audio/video visual aids. its true, this is a very expensive affair. but ASD/ADHD (attention deficit hyper active) syndrome kids are everywhere now. easy to give sermons - but my cousin and her husband gave up foreign jobs to return to India to give their autistic kid a better future. here we think, local environs is best and therapies are best for giving autistic kids a normal life. the easiest and unmistakable signs parents can pick up: child behaves like deaf, but is not really (like he/she might react to calling bell but not to name calling), NO SMILE OR LAUGH whatsoever by 1-1.5 year.
kiran
Jul 31, 2012 09:42pm
i really like the artical its informative
kiran
Jul 31, 2012 09:58pm
its informative artical nd its time to creates awarness about autism because our mostly kids suffering nd when people use retarted word for these kids its very painful for parents and government do some work because every one cannot afford to go abroad