1. What is Autism Spectrum Disorder(ASD) or Autism?
Generally, from our observation of our children, it means that they have a tendency to be in their own world, oblivious of other people needs and concerns and persistenly pursue their interest even though it is not socially acceptable. As it is a spectrum, the degrees and manifestation differs from one child to another. As such, programs to help must be customised and individually created. Structure and predictability are very essential constructs to help them cope and maintain healthy sensory modulation. Generally, much better in right brain activities(rhythm, spatial awareness, Gestalt(whole-picture), imagination, day-dreaming, colour, dimension) than left brain(words, logic, numbers, sequence, linearity, analysis, lists).
2. When did we first discover ASD?
As with most parents, our discovery started from observation of late or abnormal pattern of developing speech as well as certain non-socially acceptable behaviour.
3. Where was ASD confirmed?
Our diagnosis was made at Rainbow Centre, through a panel of two speech language therapist and a pychologist for our son Joshua, Joel and Jonathan. As the que may be long to get a diagnosis, it would be advisable to obtain valid medical diagnostic reports from private sources even though it may be costly to do so. In our opinion the value of the medical report is critical to see a child getting the best appropriate help and intervention. From our reading, the window period where the child can be moulded optimally is between birth and seven years old. As such, any time lost to delays will certainly reduce the window period to make significant difference to their development. At the moment, we are in the process of getting a valid diagnosis again for our son Joel privately, as development invalidates previous results for mildly autistic children, as they may catch up enough to enter mainstream schools with Early Intervention measures.
Personally, I do not believe that Genetics was the direct cause. I subscribe to the view that Immunizaton may be the cause as I have read US groups lobbying in Congress(http://www.up-to-date.com/dan/powerpoint/bradstreetcongress.html) on the harmful effects of indiscriminate administration of immunization. Please do no get me wrong on immunization. I also do believe in its benefits. However, I differ in how they are being administered. For example, I read that certain vaccines actually use preservative thimerosal whcih actually contains 50% mercury and such vaccines are still being used in 2001!(Bertrand Rimland, Ph. D., Director of Autism Research Institute in Mercury Detoxifcation Consensus Group Paper, May 2001)(Source : http://www.autism.com/ari/mercurydetox.html).
Basically, I know that all children, infants or babies are born with different immunity strengths and also different abilities to develop immunity. As such, it may not be a good idea to introduce many weakened virus in vaccines at one go(e.g. MMR - Mumps, Measles and Rubella) for the child to cope with. For those who happen to statistically fall within the unfortunate range, complications will develop. Perhaps age and degree of coping are required be reaccessed for safer implementation as Singapore is generally free of most diseases and there is no real urgency for immunization to be expedited unnecessarily. My inclination is to delay immunization until an age whereby children have developed matured immunity towards the natural environment and thus only need to cope with new immunize virus rather than to fight with both naturally found and introduced weakened virus. My analogy would be if I am given a choice to fight with a variety of people, I would choose to fight with those I cannot avoid first(naturally occuring in the environment) and after overcoming more or less to then deal with unfamilar opponents(introduced weaken virus in vaccines). It would be unwise and generally crazy to fight with all voluntarily unless I am confident (How would one know what the child is capable of at a very early age?)
5. How to "Undo" Autism?
We do not have a definite answer and sure answer. What we can share with you is that you have to treat the whole process as life-long, requiring the attitude and stamina of a marathon runner. In any case, through persistent perserverence, we did see significant improvements in our children to an extent where we are hopeful that eventually they will pick up enough skills to integrate and survive in Singapore society.
My son, Jonathan, who initially screams uncontrollably when faced with new surroundings or crowded places and also non-verba,l is now able to adapt to new surroundings and speak some words. He is even able to say "Sorry" and pick up quite alot of vocabulary. In any case, this is a significant change from when he was two years old.
A. How to Get Started?
1. Read, Understand, Insightfully Apply how to practice it in your specific situation and Repeat Process....
2. Practice, Review, Refine and Practice, Review, Refine ...........
Why so? It is because all the skills and knowledge that we assume can be learnt naturally does not come naturally to ASD.
There is thus unlimited number of skills and knowledge that ASD children need to learn that we take for granted. As there is so much to teach, do not be overwhelm or intimated by the workload. "Rome was not build in a day". Be patient, realistic, firm and persistent to work out the goals. Set practical and achievable goals. Go one step at a time. We consider it mandatory to break a task into many intermediate steps so that there will be success for both parents and child, which is critical in the "marathon" for sustained motivation to work towards the eventual desired goal. Believe me, we found success no matter how small, rejuvenates both ourselves and our child to persevere on. As we encourage our child towards success, their success encourages us to continue to encourage them towards success again. This positive feedback loop is critical if you are serious in helping them without burning out! Success Breeds Success!
B. We have found the Books Below Useful.
1. Teaching Developmentally Disabled Children by O.Ivar Lovaas - The ME Book (1981)
Relevance to us : Teaches how to effectively use behavioural methodology to train our children, as in training dogs or any animals for that matter. May seem crude and perhaps demeaning but we have used it and it does work.
2. More Than Words - Fern Sussmann (1999)
Relevance to us : Even though we did not directly use it. Our browsing did reveal there is some potential for relevance and usefulness.
3. A Work in Progress : Behavior Management Strategies & A Curriculum for Intensive Behavioral Treatment of Autism
by Ron Leaf, John McEachin, Jaisom D. Harsh
Relevance to us : Provides details of curriculum and strategies to adopt. It is not easy without the book to know what and how to teach. Basically provides important tangible syllabus and guidelines, which is virtually impossible to list out without professional background. We have implemented some of the curriculum and found it to be both practical and effective.
4. Behavioral Intervention for Young Children with Autism - Catherine Maurice (1996)
Relevance to us : Provides good testimony, encouragement and sharing of what Catherine Maurice did to help her children out of autism. However, as availability of therapy and cost can be a real barrier for adoption, learn from her insights of what works, will certainly help you. In addition, the curriculum she devised has been used by us and has proven to be effective and practical.
You can get the resources from the following:
C. Effective Centre attended Prior to Rainbow Centre
We are not rich and do have limited resources. We found the centres below affordable and effective relative to others. Please bear in mind that as parents we must sit in the session or at least learn what has been taught, so as to reinforce it throughout the week until the next lesson. Our personal experience with home therapy approach with limited budget was that it is not effective and painful. We would rather teach our children ourselves after seeing and learning from professionals who are more willing to share.
1. Krenza Learning Centre (Teacher Violet Kwok and Teacher Jane)
D. Useful Websites with lots of information(Start Digging for the Gold nuggets to help your children)
(Read to Update)
2. http://www.autism-we-can.com (Training Available in Singapore)
3. http://www.teacch.com (Autism Community in North Carolina - Our Model to learn from)
4. http://www.pecs.org.uk/asp/home.asp (Alternative Coomunication for Non-verbal)
5. http://web.singnet.com.sg/~autism/ (Autism Association(Singapore))
6. http://www1.moe.edu.sg/speeches/2000/sp28112000.htm (Government Support)
7. http://www.ncss.org.sg/sped/schools.html (Metta School - Education Up to 18 years old)
E. Useful Software for PECS
1. Writing with Symbols 2000
Note : Useful for Building Communication especially for non-verbal children and children who needs structure
F. Training we found useful and are still using the techniques taught.
1. TEACCH(Treatment and Education of Autistic and Related Communication Handicapped Children) Workshop - Conducted by Professor Gary Mesibov and Ms Becky McGee-Hudson, TEACCH Division, University of North Carolina) Organised by We CAN from 30 Nov - 2 Dec 2000.
How we have benefitted.
Professor Mesibov has clearly shown his compassion for autistic children and how his compassion and dedication has worked miracles through TEACCH. The lasting impression left was the autistic community built up and sustained by him and his staff in the University of North Carolina. Ms Becky, who has real experience in teaching TEACCH as well as invested interest in teaching her own disabled child, has clearly and convincinly proven the effectiveness of TEACCH method. We concur with them as we have also found it to be effective. Please note that the setting, videos and testimony of actual practioners who develop the method made a lasting impression on us and our adoption to make it work.
2. Certificate of Training in The Picture Exchange Communication System Training(PECS) - Conducted by Sue Baker and Anne Hoffman. Organised by We CAN from 30 - 31 May 2001.
How we have benefitted.
Both Sue and Anne are fantastic effective speakers that clearly demonstrated how PECS is to be properly implemented and used. As practioners with lots of experience, their delivering of the course does make a difference. The difference has so much impact that we implemented PECS immediately, buying the necessary materials as well as making PECS work at home.
3. The Shichida Method Seminar - Conducted by Professor Makoto Shichida in Singapore 21 Apr 2001. Organised by The Brain-Based Schoolhouse.
How we have benefitted.
Prof. Shichida, being the originator of his own method clearly lives by his conviction and without doubt convinced us that we have neglected the right brain ability and overlook its potential in compensating the left brain. We are currently, exploring ways to develop right brain functions to compensate weakness in left brain.
4. Sensory Integration and Autism Seminar - Conducted by Pattie Oetter, Director, Ayre ClinicSensory Integration International, California March 12, 2001.Organised by We CAN.
How we have benefitted.
We enjoyed and understood when is meant by sensory modulation and have thus not attributed some inappropriate behaviour to naughtiness or disobedience. Essentially, we learn to appreciate ourselves and others in sensory modulation to balance our emotions. The most significant message we learnt is Not to take it personally when our children screams or react inappropriately.
G. Seeking for Diagnosis or Therapy
If you are looking for someone to diagnose your child for placement in special schools or programs, you could try Mrs Chin-Lee Ming Shu of The Stepping-Stones Practice. She is a Child Psychologist and Speech & Language Therapist, who works with children on the Spectrum.
Our personal experience convinced us that getting a valid diagnosis to be placed in the queue for formal institutional help should be a priority. Meanwhile in the queue, you can continue with both therapy and personal reading on how best to help your child. From my understanding, the window period where learning is most effective is between birth and seven years old. If you find that the waiting queue from the hospital to get your child diagnose is too long, why not consider seeking diagnosis from a private practitioner.
H. Guide to Home Remodeling for Disability and Special Needs (For your consideration of suitability):