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Old 10th April 2010, 15:05   #1
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Post The Autism Thread

Whenever I mention about my son's autism, I often come across somebody who knows some relative/friend's kid with similar conditions. During those talks I came to realise that there are more questions than answers out there. Therefore I thought it would be a good idea to have an exclusive thread Autism information. During the past year, my wife has waded through ocean of information and therapy options in India. So I asked her to write an article on Autism from the POV of a mom to kick start the thread. I am posting all my wife's comments in italics.

My son was diagnosed with autism last January. It has been a confusing journey for us since. There are things I wish I had known earlier. We made mistakes which could have been avoided. So we finally decided to post our experience on a mainstream forum hoping that it may be helpful to other parents. Most of what I say applies to mild to moderately autistic children. I am writing from experience and observation only, I am not a doctor. It would be great if other parents or doctors can join in and contribute.

What is Autism?

This was the hardest thing for me to understand because every single child with autism is different. I believe there are six genes which could mutate in any possible combination to create an autistic individual. When the mutation takes place what happens is that the neural pathways from the sense organs to the brain are disrupted. The brain itself is perfectly fine, however it can work only as well as the input it gets.

How is Autism different from Mental Retardation?

Autistic and MR individuals do face some similar difficulties. In autism the intelligence is there but the individual faces difficulties due to the brain not getting proper signals. Their difficulty is mainly in social, emotional and communication areas.In MR the brain is affected so IQ is low. Both conditions may co-exist.

If you compare a child with mild autism and a child with mild MR, both can improve quite a lot with therapy. However, chances are the mild autistic child will complete higher studies, have a job in a niche area but may not be generally liked because he does not understand the unwritten social code. And chances are the mild MR child would barely make it to college, but could hold a steady job, and as he can pick up on social cues much better, he could be well liked and have friends.

Recognizing when your child needs help

All children develop differently, so it is not easy to identify a disorder. It begins with a gut feeling, you just know something is not right. It hit me when my older son once remarked looking at another young child “ Mummy, that baby is younger than our baby still it can understand more”. It is best to get the child professionally evaluated at that stage.

There is a big checklist but if all of the below key traits apply to the child it could be an Autism Spectrum Disorder.
  1. Has a repetitive behaviour, does something over and over again.
  2. Prefers to be alone, dislikes attention or simply ignores people.
  3. Speech delay with very selective hearing to the extent that it makes you suspect his hearing.
CARS (Childhood Autism Rating Scale) is available on the internet and parents can use it to self-evaluate the child.

Child is diagnosed with ASD. What now?

If you are like me, you’d probably conclude these docs are clueless. You’d also convince yourself that your child will grow out of it in no time and do nothing.
Well, don’t be me. I wasted a good six months, half in denial and the other half debating on whether therapy would do any good for the child. Now I know better and can’t help kicking myself. The longer we stay in denial, the longer we deny help to our children.

The term ‘mild’ autism is also quite misleading. It is mild only when compared to severe autistic children. When our children are compared to typical peers, their affliction is not mild at all.

It is extremely important to start therapy as early as possible. Therapy aims to create new pathways to the brain and this is possible best before the age of five. I have come across parents at the institute who got the diagnosis years ago but came in to therapy recently only because the child’s behaviour had become unbearable. It is so much harder when things get to that stage.

What does therapy involve?

Children on the Autism spectrum require multiple therapies. Speech therapy to build up their communication, Occupation therapy to work on their gross and fine motor skills, Special education to teach daily living skills and group activitiy for social skills. These are the basic ones.

Then there are different approaches to delivering the therapies like eclectic, ABA, son-rise etc. It is not really possible to say if one approach is superior to the other. It depends on what is suitable for the child. My son’s institute follows the eclectic approach and it is working for him, very slowly but it is working.

I have been advised to change over to ABA but I am reluctant. ABA is done very intensively and the child could feel pressurized. My son is extremely stubborn by nature, and I may be pushing him to depression if I choose ABA for him. We will take the slow route. However for a more compliant child, ABA can and does work wonders.

How about alternative methods to cure autism?

Yes, there are any number of them on the market. We parents are a desperate lot ready to try anything that promises a cure.

So we have CDs which promise a cure by listening to it in your sleep. We have bath powders which claim to cleanse the body of toxins and hence provide a cure. We have friends and relatives suggesting the best of temples and churches and godmen. I have not tried anything besides temples and churches so am not in a position to comment here.

There is also accupressure, chelation therapy, oxygen therapy etc which some parents try out. I am not convinced enough to try though.


To be Continued...

Last edited by Samurai : 12th April 2010 at 20:58.
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Old 10th April 2010, 16:20   #2
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Hi Samu, i know of a very dear friend in Delhi who has an Autistic son, around 16-17 years old. If you would like to get i touch with him i could PM his number and email id to you or if he would like to get in touch with you, is it ok if i give your contact to him, probably your email wherein you may both exchange information?
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Old 10th April 2010, 17:01   #3
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Default Dystonia

My son is also a dystonia patient. He shall turn seven years old this November. Actually they are twin boys. Apart from the physical challenges that our son encounters , we also encounter social challenges in adittion to monetary challenges:

a) Education.

No issues with his intellectual ability but school are not keen on accepting him in main-stream.

b) Social acceptance:

The friends of my sons, like to play with his brother rather than him and he gets a feeling of being left out. Also as he is growing he is able to understand the differentiation. (one of the complaints of my other son is that his brother is very slow and he cant play with him)

He also is bit hesitant in going in social gatherings as he feels he is bit different from others.

c) Therapists/doctors :

It is worst here. Since we have to rely on therapists for whole life, they treat them like commodities (Exceptions are there). Since you have no alternatives you have to play to their tune.

I live in Navi-mumbai. Being in Mumbai is totally attributed to my son.
(More later)

Last edited by Dippy : 14th April 2010 at 12:11. Reason: Correcting spellings
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Old 11th April 2010, 00:33   #4
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Originally Posted by dkcrpl View Post
a) Education.

No issues with his intellectual ability but school are not keen on accepting him in main-stream.
Once my wife took our son to a Montessori school for admission. This school is run by a lady who has had experience in handling special needs children. But the lady tells my wife that she doesn't accept special needs children any more. Apparently, the parents of her normal students forced her to ban special needs children fearing that their normal kids will pick up bad habits from special needs children.

So true about education. I must have called or visited atleast twenty schools, some politely refuse, some say we’ll watch the child for a while and then decide. Some are eager to accept but I was not convinced about their commitment towards the child. Finally we have found a school, another mom of a special child vouched for it. Let’s see. All this for Playschool!

Seriously, anyone who likes kids and is looking for career options should consider becoming a therapist. There is a severe shortage, the charge is anywhere between Rs. 350-500 for a one hour session and they have parents on waiting lists. So much so that some therapists do not want any more parents contacting them.

Last edited by Samurai : 12th April 2010 at 20:58.
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Old 11th April 2010, 10:05   #5
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Quote:
Originally Posted by Samurai View Post
Once my wife took our son to a Montessori school for admission. This school is run by a lady who has had experience in handling special needs children. But the lady tells my wife that she doesn't accept special needs children any more. Apparently, the parents of her normal students forced her to ban special needs children fearing that their normal kids will pick up bad habits from special needs children.

My wife is a Pre-Primary teacher in VIBGYOR HIGH, Marathahally and in her school more than 15 special kids are studying, handling by different special educators.

Autistic/Mental Retardation/Cerebral palsy/Learning Disabled/Slow Learner kids are studying along with the normal kids.

For Autistic and MR kids, in some subjects they give individual attention at special education department section which is handled by special educators. For other cases Special Educators will come to the class and handles the kids.
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Old 12th April 2010, 15:04   #6
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Much needed thread. Thanks to Samurai. Early identification is very important & there are lot of alternative treatments available.

Autism - Wikipedia, the free encyclopedia
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Old 12th April 2010, 15:29   #7
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Samurai, what is ABA?

Does ayurveda have easier remedies?

Found the following link : http://www.rediff.com/news/2004/jul/21spec1.htm

Last edited by sbraj : 12th April 2010 at 15:40.
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Old 12th April 2010, 20:56   #8
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Originally Posted by sbraj View Post
Samurai, what is ABA?
My wife has checked it out and talked to therapists who give ABA treatment.

From what I’ve gathered, ABA is a reward based behaviour training method. For example, Lets say the therapist wants the child to point to her eye on hearing the word ‘eye’. Initially the therapist will say “eye” and take the child’s hand and guide it to her eye and immediately reward the child with a favorite food item (food rewards are the strongest, anything else the child likes can also be used). Slowly physical prompt is decreased and the therapist only gives the verbal prompt, “eye” in this case. The child begins to understand that if he wants the cookie he has to point to her eye. This understanding does take time, sometimes months. However once the child gets the idea it becomes easier to teach a lot of things in this way.
Many of our children are not very motivated by praise, approval, acceptance etc, hence the need to use other motivators. Anyway once the child can consistently do the expected, the reward is faded away.
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Old 12th April 2010, 21:41   #9
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Thanks for opening this tread samurai, it will be very much helpful for parents who face similar issues.
One of my close friend’s daughter was diagnosed with Autism and she is undergoing therapy for that. You will be surprised to see the difference before and after therapy – they will be as good as any normal child. But, wanted to tell you that he is in Boston and taking the therapy there.
Most important thing here is that they should be allowed to play and study with normal kids. Here, till the regular school hours they play/study with other kids and after hours they will be attending special training. One thing that you need to make sure is that you should be talking to him (rather very one closely related to him) in only one language. if the medium that taught in school English, it will be good if all you speak in English rather than mother tong at home.
There is a community for parents in Orkut which discuss the issues and solutions with autism and I feel it is very informative. If you want, I can PM you the link.
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Old 12th April 2010, 22:16   #10
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Hello Samurai its been a long time but now finally i know what was happening all along!!

This belongs to a group of disorders called Pervasive Developmental Disorders!!Asperger syndrome is also belonging to the same spectrum (from My name is Khan!)

i am little bit busy today but i shall reply to any queries whatever i know!!
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Old 12th April 2010, 22:23   #11
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Originally Posted by Superleggera View Post
Most important thing here is that they should be allowed to play and study with normal kids.
School should be such that teachers are understanding enough to appreciate the efforts put by the kid.

Kid should not be subject to ridicule etc.

The dog-eat-dog competition nurturing schools may not be the right choice.
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Old 14th April 2010, 10:32   #12
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Originally Posted by sbraj View Post
Does ayurveda have easier remedies?
We have heard that Kottakal has recently started a unit specially for autism, that could be very helpful for people who want to explore the ayurved option. My wife's comments continue in Italics.

Resources in Bangalore

The best place to get a diagnosis is NIMHANS in Bangalore or AIISH, Mysore. Dr. Shekar Sheshadri at NIMHANS is regarded very highly by everyone who has met him.

And for therapy there are so many institutes in Bangalore today, a simple google search will provide the list. I’ll mention only the few that me or my friends have personally confirmed to be good and hopefully others here can add to the list.

Com-DEALL in Cooke Town
This is regarded as the best in bangalore, they have an early intervention program for 2-6 year olds. My son is in DEALL Program, they are doing something right. DEALL has a unit in Mumbai.

Dr. S.R.Chandrashekar ISH, Hennur Rd
ISH conducts something known as pre-academic skills class, it is helpful for LD as well as autism. Very good feedback from parents.

Bubbles at Basveshwarnagar
They focus on developing play skills and everything is taught through play. In addition to regular classes they sometimes have month long parent and child training sessions.

NIMHANS
Here I don’t have info about their regular classes but they have a 3-week training program for parent and child, and that is very good.

While the above institutes provide only special education. There are many schools which follow the integrated approach as Wildon has mentioned. Again I’ll mention only the ones I know to be good in the Sp.Edu area and others please do the same.
  1. Learning Tree, BTM and Vijayanagar
  2. Headstart Montessori, Koramangala
  3. Neev, Indiranagar

Personally I prefer to keep schooling and special education separate because very few are good in both.
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Old 14th April 2010, 10:47   #13
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The best place to get a diagnosis is NIMHANS in Bangalore or AIISH, Mysore.
Hi Samurai,

AIISH is very reputed in the field of stuttering; and other communication disorders. I am a PWS (person who stutters) and a founder trustee of an NGO, working in the field of stammering. In this capacity, I have had a few interaction with AIISH and was most impressed with them.

Our NGO also work in rural areas and unsurprisingly awareness about such issues is very low there. We have many cases of autism, where right care and attitude can do wonders, but it is not forthcoming :-(

I will be following this thread closely, to know more about autism. And if anybody needs any info about communication disorders, please feel free to ask.

Nitin
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Old 14th April 2010, 12:02   #14
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A Special Educator who is working with my wife suggested this academy. A B Academy - HRBR Layout.

Dr.Smita Awasthi.

As per her getting admission is very difficult.

Contact Person name: Rumno Mukherjee : 9945562005
Website: Behavior Momentum (I) Pvt Limited

Also attaching the prospectus herewith.
Attached Files
File Type: pdf prospectus ver2.pdf (139.2 KB, 860 views)
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Old 14th April 2010, 14:43   #15
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This is regarding my relatives child

He used to speak earlier but with some difficulty. But these days he speaks less and is getting difficult to understand. He is around 5 now. Even from a very young age, even before he started his school, he started to read very well. He was taught by his grand parents. But what concerns us is his difficulty in speaking. Also he never attempts a conversation. Whatever he has spoken are more of statements and reading something aloud.
As directed by school, he is about to be shown to some speech therapists.
Just wondering if this also comes under autism.
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