AAPKI ANTRA..............

There has been no derth of media cashing in on disabilities, from hearing loss to stammaring... making fun of the character involved. A latest addition to this farce is this serial "Aapki Antara" on ZEE TV (MOn-Fri, 8.30 pm). It is a story about A little girl of 5yrs named Antra who is a high functioning child with Autism. There are a few objections to the content being shown:

• I strongly object to the use of the word "autistic", It should be 'child with Autism' or 'child in the Autistic Spectrum'. Since there is a struggle towards social acceptance of these children.... charity should begin at home.
• the test battery shown in the serial is very misleading. Similarly the charges are exaggerated. Many of my clients have come up with doubts which were extremel;y unrelevant. None of my clients have ever been through CT scans!! and in what way does it determine Severity of Autism?
• The overall picture given to the father about Autistic Spectrum Disorders is entirely dismal. They seem to have forgotton about the children who do well academically in regular schools, are self dependant and mingle well with normally developing peers. As a result many viewer parents who have newly received the news of their children being in the spectrum recently, have begun with a very negative attitude and professionals have spent hours counselling them.

I hope certain facts are conveyed realistically in the up coming episodes. these children deserve to live with dignity. The society needs to be educated about this group to foster easy acceptance. Same applies to schools so that they agree to give opportunities to these children. I believe that if the serial does not head in the right direction, it will just land up being another family drama, besides misleading people.

Ideally a doccumentry on the Autistic Spectrum Disorders spread over a few episodes andf shown across TV channels would have been a good idea to create awareness,

Nonetheless, the serial is a good beginning and i hope it has a meaningful and logical run!

.

concessions........ BUT.......

Heartiest congratulations to all parents and professionals who have been instrumental in getting the concessions for children in the Autistic Spectrum (see attached link). This had been going on for a long time and it was time that these differently abled got their due. However implementation of the concessions is a very difficult task and those involved are up for a tough battle ahead. One may now ask ...... why is that so?.
Well theer are a few important issues:

• Unlike in cases of LD where demarcation of the children under categories like Dyslexia, dysgraphia etc can be made, it is different in case of the children with Autism. Autism is a spectrum disorder and a child may lie anywhere in the spectrum and exhibit those symptoms which are predominantly in those areas. Thus no 2 childrem with similar severity demonstrate similar behaviour and so does the prognosis.
• though ADHD/ADD is a symptom of Autism, the reverse is not necessarily true. Then what happens to children with ADD/ADHD without Autism. They (not all) find it difficult to cope too. Do they get diagnosed with Autism, just to avail of the concessions?
• currently these concessions will be made available to children in the 9th and 10th grade. How many children in the Autistic spectrum are able to make it to the 9th grade?
• many schools do not integrate children with Autism even when they are high functioning. Many are asked to leave school. What happens to these children? though NIOS is an option (again very much later) what about the holistic development of thses children?

Personally I feel, before going in for academic concessions, getting an admission to a regular school should be a priority......... at least an opportunity should be given to children who are capable of regular schooling. It is their right to education and more importantly , a dignified living.

Language before speech!!

Hello readers,
I was just going through a few e-mails in a e-group for the children with Autism. Many parents want to know about speech therapy for their children in the Autistic Spectrum. Some even wanted to know as to why does their child not "communicate" irrespective of the fact that he sings advertisement jingles and other songs well. I would now want to highlight this issue and give a few points for parents.
It is very important, first and foremost that Language development precedes speech. Speech is just a manifestation of language. In other words, if the child has a healthy speech mechanism (no presence of any neurological deficit structurally) then he needs to have adequate language , in order to speak. TO make this point simple, Language is divided into 3 parts:

1. Syntax-grammar. i.e constructing a sentence, word order.
2. Semantics- meaning eg, idioms, proverbs etc.
3. pragmatics i.e use of language (here, in social contexts.).

All the above 3 components go hand in hand. A child in the Autistic spectrum usually lacks in the Semantic and Pragmatic abilities predominantly. That is why he may not understand humour, wit or he may not be able to converse in a group and so on.

Speech-language therapy in these cases usually focuses on improving these skills in addition to the Language development via vocabulary building and sentence construction. A small tip for parents: Focus on involving your child in as many group activities as possible. Include him in your social activities like, shopping. Build up on area which interest him initially.

Do not obsess with "speech" at the
first instance. Remember no matter how much you try, as long as the child does
not develop language skills he will be unable to
"talk".

elections!!!

hello readers.....

the election hysteria is bac. Theres enough in the papers already and i dont think (personally) any party or individual deserves a mention here.

What i want to highlight is the way some celebrities have gone out of their way to 'encourage' the common man to vote. I dont think that is necessary. 26/11 was enough to jerk us. What i wished was that someone or some party had taken up the initiative on Disability, atleast forming an iota of their agendas. But then as usual Bollywood, mudslinging and off late the slumdogs have had their complete attention.

Well, here is what most of my clients to whom i ve spoken with have wanted for their specially abled.

• Inclusive education to be made mandatory.
• aiding schools for inclusive education.
• Training programe for mainstream teachers to handle specially abled (educable) and incentives for the same.
• considering the lack of awareness in the peadiatric disability area, efforts via hoardings and advertisements on TV.
• vocational training to be affiliated and recognised by renowed universities.

While many may think or express doubts about the ability of these children to perform, I would reiterate that most of these children fall in the borderline or mildly affected category wherein they can perform in regular/ mainstream set ups with a littly help. What is important is the effort to make this group lead a dignified life.

I hope that whoever comes to power will spare a thought for these children of lesser God.

Am Back!

Hello readers,
Am finally back after a loooooooong hiatus. HOpe to have more share of information and inputs from professionals and parents. Keep looking for these in days to come.
regards,
Priya

World Autism Day!

All across the world, 2nd Aprilwas marked for those in the Autistic Spectrum Disorder. A client was all excited and came up to tell me about some articles she had read up in the local news paper. I asked her, what was so special about the day. Was it any different for her struggle for her son's acceptance into the society? Did the day indicate any improvements in her son's rights to dignity and opportunity? Then what was it that made her so happy? Just a mention of the disorder and the features and treatment (rather... rehabilitation)opprtunities, by the same selected professionals who are mentioned every year with the same comments and similar statistics? The photograph and struggle story of the same parent and her child every year!

Common. Enough of these gimmics. I suggest the reporters, instead of going overboard with the same information every year, why not increase public awareness by helping the acceptance of these children. Many of them can do well in regular schools but are not given any opportunities. There are no vocational courses suited to cater to this group. Each parent struggles in his/her own individual way. Many dont even have access to therapies. Some fall victims to undue medications which though give short term relief from Hyperactivity, but are hazardous to health in the long run.
Its high time the parents of effected children Gain information on more practical aspects rather than form forums which end up only being publisised and they land up wasting time and energy.

The bottom ;line is early identification and commencement of therapies are the only way to maximise the child's potentials and like in all cases there is no short cut to hard work!

my tribute to those in the autistic spectrum...

“The Rainman”
Beyond the horizons of ‘truth’
Beyond the reach of time…
Lives the child with Autism
Away from the qualms of realism.

Loved at birth,
Cherished for sometime
Later shunned by his parents
Shunned by the world.

But the truth will anyone wanna know…
Or limit thyselves to ‘the rainman’ shadow?
The diagnostic calamity may befall
ASD, ADD, Asperger’s and all.

Their life within the nut
Difficult to crack…
To let us go in
Or pull him outside.

Doctor shopping in full spree
Nothing but ignorance indeed.
Parent, I know thou plight…
He’s more than just the rainman inside.

To us his world is all new
Witches and devils to name a few.
Echolalia- immediate, delayed, mitigated
Getting us all the more agitated.
Attention deficit, hyperactivity, stereotypes and all
You name it; he has it on call.

So let’s try and get him out
Far from the world of the perseveratory bout.
You go to him and he’ll come to you,
That’s my message through and through…



- Ms. Priya Nayak-Gole
(To the parents of these children who travel miles with utmost dedication)