Articles on Autism in the Indian Press!

Ever since April 2nd was made the "World Autism Day" we have read articles about the condition almost on a daily basis in the Indian press. Times Of India, DNA, Indian Express and others have woken up to the Autistic World.

Finally the word is getting around. New figures suggest that 1% of all children end up in the Autism Spectrum. This is a huge wake up call. For parents as well as institutions and special need educators. The time has now come to take a long, hard look at options available for parents to provide their children with education that they deserve.

In a country where literacy has not touched all its citizens yet and basic education is a dream for many let alone Special Education it is heartening to see that the media will carry the torch forward, even if it is only because Autism is the flavour of the month.

As parents our life becomes a little bit easier if we don't have to explain to every new person we meet - What Autism is!

31st March World Autism Awarness Day!

Finally, Autism gets its own Day in the year. It's about time too. With Autism reaching epidemic strengths in many parts of the globe this is the right time to make people aware of this condition. In places in India where awareness is very low and quacks and faith healers aplenty this is just what the doctor ordered. Please tune into CNN on this coming week for special programmes on Autism. Don't miss it!

Don't Panic!

Ok, so there are no Real Autism Centers in Pune - Don't Panic! There are other creative ways to deal with the present situation in Pune. Build a support system around your child so that you the parents have the time for yourselves be it for work or play.

Get a daytime nurse for your kid. A full time live in maid to look after the house and a full time driver. With these 3 important areas covered you can and will overcome the fact that there is no one single place where your child could spend the day in a good and productive environment.

Quantity Vs Quality!

The one big learning we have had as parents of an Autistic child is that when it comes to therapies it is the Quality that counts. Just keeping your child in a "Center" for X number of hours a day may not be really productive or effective for the child. Especially if the people around your child there are not properly trained or qualified.

When our daughter started seeing a Clinical Psychologist for her Behavioral Therapy her first sessions lasted only seconds. Slowly but steadily the seconds turned into minutes and after 6 months of one on one sessions she is now close to 45 minutes at a time all in a good mood and with excellent response. Sadly many other parents we have met seem to take a different approach to these private sessions.

As they pay money for the hour they feel that should be the time their child should stay. Whether the child likes it or not. The standard "I should get what I pay for", logic comes into play. In fact over a long term this will be more harmful for the child as the sessions will seem more like a punishment rather than something to look forward to. After all a five minute "happy" session is likely to get more through to the child than a 30 minute "unhappy" one.

For many Autistic children that have strong likes and dislikes the gradual approach will pay higher dividends in the long term. At least in this scenario Quality will always win against quantity.

Red Flag It!

Many a times when our children start at a new center the parents give a free hand to the staff at the center to work with your child. Rightly so as that is their job. Certain points need to be looked at to make sure that the direction taken with your child is the correct one and Red Flags should go up if you as parents feel any hesitation what so ever in the methods or rules followed by the center.

Below are certain scenarios that if present or occur in your child's Autism Center, then you as parents should be alarmed and raise the "Red Flag":

1. The classrooms become a NO Go Zone for parents: If this happens or is the current policy of a center most probably they are not doing their job ethically. Most reputed Autism Centers allow parents to have access to their children at the center at all times if needed.
2. If your child cries everyday he or she is left at the center: If the educators cannot bring under control this event then they are not very good at their jobs or lack experience and proper training.
3. The center calls you almost every other day to have your child picked up early: This again exposes the lack of qualified staff and poor daily routine management.
4. No Results: If after 12 months at an Autism Center your child shows few real results it obviously means whatever they are doing with him or her is not working and worse they probably don't know what will.
5. You hear other parents say "What to do it's the only place here.": Sometimes we parents fall into that trap. If you are not happy with the center your child goes to and you say the above as justification for it, believe me you are causing your child more harm than good in the long run. As no therapy is far better than BAD THERAPY!
6. New teachers constantly come and go: This is by far the most disruptive situation for an Autistic child to deal with. It also highlights poor management and basic neglect towards the needs of the children.
7. The Fees Go Up abruptly: When the fees go up suddenly for no apparent reason and no real value is added to your child's welfare at the center because of it something is a miss.
   
8. Medications: If anybody other than a Psychiatrist prescribes any sort of medicine for your child to "Calm" him or her down please DO NOT ACCEPT IT! Autism the condition by itself does not come under the domain of General Practitioners or Paediatricians or Neurologists, no matter how experienced they might be. Think about it would you get a hair dresser to re-wire your house? All medications for the treatment or control of Autism must be supervised by a Psychiatrist.

Keeping these points in mind will ensure that you are not anyway harming your child more by sending him or her to a place that is not capable of providing the required help and care.

What Makes A Good Autism Center?

So what makes a good Autism Center?

Many factors play a part in making an Center for Autism complete, here are the main ones:

1. Affiliation with a Hospital: Most Autism Centers are either run by Hospitals or have some sort of affiliation with them. Simply because such center are part of the Health Care Industry, sadly in Pune the are part of the "Cottage Industry".
2. The Professionals: Leading with a Psychiatrist the teaching staff should comprise of a Clinical Psychologist, Occupational Therapists, Speech Therapists and special needs educators. These professional should be based at the center and be accessable to the kids and the parents on a daily basis. Having these people only mentioned in glossy brochures and on websites is not enough.
   
3. Additional Therapists: To help the children along their way and aid the work done by the people mentioned above therapists for Music, Dance e.t.c should available to work with the kids.
4. An exclusive premises: Due to the nature of an Autism Center a dedicated premises is a must i.e. not in someone's living room.
   
5. A Cheerful and hygienic environment: An environment that provides a warm and friendly and secure vibe to the children is a must.

Many of the people in India might say that these points are not possible in a developing nation like ours. To such readers let me point out that along with world class highways, malls, airports and the lot, world class health care and special needs child care is also an eventuality and not an optional extra.

Our Run In with an Autism Center in Pune!

As mentioned earlier our daughter who has Atypical Autism used to attend a so called Autism Center here in Pune. She was there for just under two years and we were very upset in the end for not seeing any improvement in her behavior.

Not only did she not show any signs of improvement but on the contrary her demeanor was getting more erratic. Her sleep patterns were all over the place. In the close to 2 years that she went to this center she must have had only about 10 to 15 good days. We would define a good day as a day when she went for the full day and left for home happy by the end.

This showed that the routine at the center was not consistent. Sporadic therapy sessions with long gaps in between can be hell for any autistic child which as parents you would be well aware of. Also, to complicate matters because she did not seem to settle there we were asked to put her on this medication. We went ahead with this medicine as we trusted the people that ran this center. Why wouldn't we as they were an "Autism Center" after all. But this was a big mistake. We should have instead immediately consulted a psychiatrist before starting any intake of medicine. Like they say hind sight is always 20x20.

Strangely in two years or so we never met any psychiatrist through the center. Neither did our daughter. An autism center without a psychiatrist is like an operating theater without a surgeon - useless. Also, the teachers are paid poorly and many left as soon as they got better jobs.

To cut a long story short we decided that going to the center was harming our daughter more than doing her any good that is when we decided to take her out.

Finally we had seen the light and taken the right decision, because later on meeting many of the different ex-teachers/therapists that had worked at the center while our daughter went there we have heard of many other horror stories too. We have also sadly found out that our daughter used to be left locked in a room when she cried incessantly. As parents we are disgusted.

Many people have also mentioned that they (the center) are doing the best they can do and their intentions are good. At this point please be reminded that "good intentions" alone cannot be the basis of something as serious as a Center of Autistic Children. Either they should do their job ethically or not do it at all.

The lives of very special children are at stake.

The Story So Far!

This blog has been created for all the parents of children with Autism that are based outside of India/Pune are planning to return to live in India specially to the city of Pune. At the start there is some good news and some bad news. The bad news is that there are NO Autism Centers in Pune. At least no proper or real centers that is. They may have the words "Autism Center" in their name but that does not mean anything. We found that out the hard way but more on that a little later.

As parents of an Autistic child we want to inform other parents that are in the same situation like us of the ground realities here in Pune vis-a-vis Autism Centers so that they take more informed decisions about coming back here and know of the services on offer for their Special Children.

Now for the good news. Even though there is very little on offer for a Child with Autism here in terms of all-in-one centers there is on the other hand, we have found a good bank of Private Health Care Professionals that can help your child develop. Psychiatrists , Clinical Psychologists, Occupational Therapists e.t.c are available for one on one sessions. Getting a good set of people together was a challenge at first but 6 months after our daughter was taken out of an "Autism Center" we can now happily say that she is responding amazingly well to the team of therapists that we have put together for her.

One important point to note here is that if you are looking to leave your child at a place for a few hours everyday there is no place currently available here in Pune that has a team of Special needs care professionals that will work with your child on a daily basis. At best you have creche type places where the aayaa's or maids will out number the teachers. Most special needs teachers do not operate in Pune as the wages our paltry and working conditions very poor.

Mumbai (Bombay) being close by has created a greener pasture for these professionals as the salaries are better there and opportunities far better. Having said that Pune is changing. In fact it is currently one of India's fastest growing cities if not the fastest and this growth can be seen in all sectors, including health care and more importantly in Child Development areas. The bigger hospitals here in the city are realizing the true value in bringing good services to the special needs children and that it looks like this is going to be a key area of focus in the coming years.

Because, the Government will not do anything for Autistic Children in the city yet, it is a free for all for private entities or individuals to do what "good" they want to do. Mind you the "good" here is relative. As in one man's food could be another's poison.

So, the simple truth is this. One parent/guardian will currently be needed to go from one therapy session to another though out the week, as the true Autism Center here in Pune is still a distant dream.

In our next post we shall share with you the points that we feel will make an Autism Center a true place where children can develop and flourish to the best of their ability.