Autistic Spectrum.......

Autism Awareness

I saw this little child all of 2yrs 2 m, who was reffered for lack of "speech". It dint take long to see that he demonstrated features of Autism (apparantly mild). tHe reason i am mentioning it here, is because this child has a history of G6- PD deficient anemia, when he was a few months old. Though health wise he is now better, i was wondering if the features of autism were in anyway linked to the genetic disorder. According to wikipedia, Glucose-6-phosphate dehydrogenase deficiency is an X-linked recessive hereditary disease characterised by abnormally low levels of glucose-6-phosphate dehydrogenase (abbreviated G6PD or G6PDH), a metabolic enzyme involved in the pentose phosphate pathway, especially important in red blood cell metabolism. G6PD deficiency is the most common human enzyme defect.^[1] Individuals with the disease may exhibit nonimmune hemolytic anemia in response to a number of causes, most commonly infection or exposure to certain medications or chemicals.

But what is important now is Immediate commence ment of Sensori integration (occupational ) therapy, Followed a little later by Speech-language therapy. Ideally he should progress well. But only time will tell. In this case it is also vital that proper genetic counselling be done particularly if the parents wish to go in for a second issue.
Good luc to the kiddo.
(pic courtesy: Parenting4tomorrow.com)

Occupational therapy blues.

Dear readers,

First of all i apologize for not writing for long. Actually have been busy with work. In fact it was one of the reasons i got back to writing.
As most of us know, Occupational therapy (sensory integration) is one of the most important parts of rehabilitation for a child in the Autistic Spectrum. However most therapists i know have been taking undue advantage of unsuspecting parents. I put forth a few pointers which can help already harries parents confront erring therapists and coax them to do thier Job!!... this in the benefit of the child.

1. Sessions ahould be conducted individually, atleast till the child settles, on a one - to -one basis.
2. home programme should be provided to the parents at regular intervals and the goal behind each activity should be explained so that parents can work effectively.
3. there should be regular discussions (atleast once a month) with other professionals working with the child so that the holistic progress can be attained.
4. therapy schedules and timings should not be frequently changed as this hampers the routine of the child. I know of cases where the parents have to call everytime before the sessions to confirm timings and there is no progress in the children.

Hope these points are useful. Good luck and Take care!

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".

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!

Autism info....

AUTISM
Parents may hear different terms used to describe children within this spectrum, such as autistic-like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled. More important than the term used is to understand that, whatever the diagnosis, children with autism can learn and function productively and show gains with appropriate education and treatment.
Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. The person may have difficulty initiating and/or maintaining a conversation. Most of the public, including many professionals in the medical, educational, and vocational fields, are still unaware of how autism affects people and how they can effectively work with individuals with autism.. Like other children, they respond to their environment in both positive and negative ways.
Autism is a spectrum disorder. The symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity. Two children, both with the same diagnosis, can act very differently as talking at others.

Persons with autism may also exhibit some of the following traits.
Insistence on sameness; resistance to change
Difficulty in expressing needs; uses gestures or pointing instead of words
Repeating words or phrases in place of normal, responsive language
Laughing, crying, showing distress for reasons not apparent to others
Prefers to be alone; aloof manner
Tantrums
Difficulty in mixing with others
May not want to cuddle or be cuddled
Little or no eye contact
Unresponsive to normal teaching methods
Sustained odd play
Spins objects
Inappropriate attachments to objects
Apparent over-sensitivity or under-sensitivity to pain
No real fears of danger
Noticeable physical over-activity or extreme under-activity
Uneven gross/fine motor skills
Not responsive to verbal cues; acts as if deaf although hearing tests in normal range.



For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our senses of touch, smell and taste work together in the experience of eating a ripe fruit: the feel of the fruit fuzz as we pick it up, its sweet smell as we bring it to our mouth, and the juices running down our face as we take a bite. For children with autism, sensory integration problems are common. Their senses may be over-or under-active. The fuzz on the fruit may actually be experienced as painful; the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors are actually a result of sensory integration difficulties.
There are many myths and misconceptions about autism. Contrary to popular belief, many autistic children do make eye contact; it just may be less or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills, such as sign language or use of pictures. Children do not "outgrow" autism but symptoms may lessen as the child develops and receives treatment.
One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children with autism, they can and do give affection. But it may require patience on a parent's part to accept and give love in the child's terms.

Progress!

Today 4yr old Prem (name changed) spoke 3 sentences on his own free will! To any one it sounds something so ordinary but then Prem is no ordinary........ he is specially abled. He was diagnosed with Moderate degree of Autistic Spectrum Disorder (ASD) last year. He would only cry to communicate his needs and had a lot of sensory issues. But today he has secured admission in a school based on an interview....... this goes to prove how hard work and dedication on part of the parents following proper guidance can make wonders for a child like Prem.
This is one of the many success stories. Read on and look out for further info on Autism in this blog. Till then Take Care....