Spectrum Mum in Malaysia is my new blog, going forward from where my previous blog Rainbows In The Sky left off. Rainbows In The Sky was inspired by my journey and experience with recovering my eldest daughter from Autism. Also, it chronicles our efforts in preventing the further onset of Autism in my 2nd daughter. Now, my eldest daughter May is recovered and her little sister Min is no longer at risk of Autism. We used to look up at the sky desperately searching for rainbows after a stormy challenging day living with Autism. Now, every day is a blue skies and sunshiney day.
Spectrum Mum in Malaysia brings me to a new chapter in our lives. The land of managed recovery, a dream come true for us and hopefully it will come true for many other families affected by Autism. Though my children no longer has Autism nor at risk of it any more, Autism has left a deep impact in our lives. It leaves a lingering aftermath, the scars may no longer be visible yet the wounds deep inside are still healing, slowly but surely. We still continue with alternative treatments to treat their lingering health issues. It will take a long time to recover from the toll that Autism took on our daughters, even longer to recover from the spiritual ravages, personal sacrifices and professional setbacks we encountered.
Many people wondered why I still continue with my Autism Advocacy works now that my girls are recovered. When my daughter was first diagnosed, I reached out to many people who provided support and shared their knowledge. This was a priceless gift. I prayed to God to help me recover my children, in turn I vowed to help others and pay it forward. I strive to advocate alternative healthcare treatments for children affected by Autism and I hope to continue empowering other parents to seek effective treatments for their children.
I am no longer an Autism Mum, I am a Spectrum Mum of 2 children recovered from Autism. April is Autism Awareness Month. Awareness is great, but Prevention, Treatment and Support is even better.
Marissa (Spectrum Mum to 2 recovered girls and Autism Advocate)
Great blog, very informative. Its great that you are keeping it up to bless those affected by autism.
I had a quick question: Did you ever suspect vaccines being part of the reason for the Autism onset?
Thanks for your comments. There are many causative factors for Autism, in my eldest daughter vaccines did play a part, but it wasn’t the only cause in my opinion. But for my 2nd daughter, Rotavirus infection (not the vaccine) was the cause of her regression.
I’ve read your story on the The Star recently. I’m really happy for you on your success treating autism on your daughter. I’d like to know if low income earner parents can do what you did? It’s not that they’re not interested at all. If you ask 100 parents including me, yes they all want to help their children. They just cannot afford it. I know all the treatments you’ve mentioned are very costly. Are there any alternatives?
There are many things we can do to improve our children’s health even on a small budget. With the GFCF diet, instead of buying pre made rice milk, you can make your own rice milk, there are recipes on the web. Instead of buying expensive packaged premixes, you can make your own bread and biscuits. Many of our local foods are naturally GFCF anyway, so there’s no need to waste money on buying packaged processed GFCF foodstuff.
As for biomedical, there are 3 biomedical doctors in Malaysia. You can check with their clinic how much each doctor’s consultation fee is. You can choose not to do lab tests or discuss with your doctor if you can do a cheaper alternative test if possible. There are many treatments that you can do without the need for testing. Based on a thorough consultation which includes detailed patient history, symptoms and behaviors, family medical history and clinical examination, an experienced biomedical doctor can identify many issues which can be treated.
As for supplements, you can either purchase it from your doctor, or shop on the Internet for alternative brands. You can also search local pharmacies for appropriate vitamins etc provided that you read the labels carefully. Learn to compare prices, read labels and educate yourself so that we don’t end up spending money unnecessarily.
There are many free resources on the Internet, websites, health forums, conference videos and many more that are free. The KL Biomed Health Forum is free, there are many senior parents who are willing to share their experience and provide practical advise. Prioritize your goals so that you can manage your budget every month.
Hope this helps,
I was touched when I read your article in the Sunday newspaper.I would like to know where did you send your daughter May to help with her fine motor skills especially with handwriting. I am quite concern as she is six years old now. I hope you will be able to guide me. Thank you.
May I know what is your daughter’s diagnosis? We used ABA Therapy, but for fine and gross motor issues, many kids also respond very well to occupational therapy.
She had seizures as a baby due to hypoglycemia(sugar level). But now she has outgrown it. She takes epilim daily and it has stopped her seizures. She used to rock just like your daughter May, but now it has decrease. I read in your article that May was struggling to grip the pencil correctly. I am sending her to an occupational therapist but its almost a year now she is still drawing vertical lines and has not started writing her alphabets. What exactly did you do for your daughter to help with her writing? I hope you could help and guide me…Is there anyway I could contact you? Thank you for all the support.
Hi! A very informative blog but there are a few questions which I would appreciate it if you could respond to.
What made you choose the GFCF diet amongst the other diets? Also, when you ordered the supplements into Malaysia, were you taxed or did the customs stopped your purchases? Do all diets require supplements? Can you not get the missing vitamins and minerals etc from natural foods such as calcium from anchovies (ikan bilis)? Which cookbooks did you get? or which GFCF recipe sites are the friendliest for picky eaters? Do you have a good organic chicken supplier in KL? May I please have the contact and a beef one (imported or otherwise), if you have one?
I wanted to know why you did not highlight the Body Ecology Diet. Was it because the allowed foods were too limiting for a child or did you find aspects of the natural cleansing too alarming? Did you consider it for your own children too? If not, why not? I am seriously considering this and am also looking for a coach or a practitioner in Malaysia. I have looked online but have yet to find one. Should you know of one, I would appreciate it if you could share his/her contact details.
I was a little confused by the definition of a biomedical doctor. Are they some form of Wellness nutritionists? Who certifies such people? Are they just additional qualifications relating to practicing nutrition as a means to recovery? What sort of qualifications should I be looking out for? What exactly does such a doctor test for that an ordinary paed cannot do? If a paed, would it mean any paed or just developmental paeds? Are we referring to allergy tests? Why did you choose the Singaporean doctor instead? Is he qualified in something additional that the other 3 did not have (Right, I’m sorry that was a most difficult question to reply on a blog. Would you please email me please so that I can think if a Singapore trip would be worth it?)
I read the page where you had set out the steps to seeking help. However, may I please have some suggestions as to who to seek to do the diagnosis. (we are ion the midst of a diagnosis but am wondering if we should seek a diagnosis from a psychologist too. For example, do you go to a developmental paed or a psychologist? Also, I note the wisdom of your suggestions relating to seeking ABA therapy for treatment aside from the diet but I know for a fact that the cost of the ABA treatments can be rather astronomical. Such therapy taken together with dietary food and supplements would be enough to bankrupt a family. We do not do ABAT but we do, do ST and are doing the socialising via old school (by that I mean an enormous amount of visiting friends and play). Would that mean that full recovery is not achievable or much slower?
When you say that your children have recovered, does this mean you do not practice the diet anymore? or does that mean that you do it for short periods each year? If so, for how long?
Lastly, were your children placed in school when you did the diets?
Oh dear, I lied, this is the last lastly, would it be possible for me to contact you by email and not to put it in this blog? Please advise. I really just need someone to write / talk to and answer some questions (which you probably hear a lot but please spare me a little time). I have been given quite a lot of running around and I just need some honest advice from someone who has been there and done that. The internet is really a giant chicken and egg situation and depending on who you seek advice from, you’re either at the start or really at the start of yet another dead end and unfortunately, time is something any parent in such a situation can ill afford.
Great questions, I’ll try to answer as best as I can. Though it’s going to be very long and I will have to post it on the blog. For the future, you can either email me directly at firstname.lastname@example.org or post your questions on the KL Biomed Forum at http://health.groups.yahoo.com/group/klbiomed/ However I prefer if you post to the KL Biomed Forum rather than email me directly as I may not be able to reply to individual emails quickly. On the forum, your questions will be answered by many Malaysian parents with lots of experience, thus you don’t limit yourself from just one person’s perspective. I totally understand your predicament, together we will do our best for our children.
Thank you for your info, Marissa.
If you can make the time, please visit my facebook page, http://www.autism999.com where a small group parents with autistic kids from all over the world, flocked together and share their stories. Hope to see you there.
Thanks again and all the best to you.
You may want to look at this website that shows that there has been research proving that vaccines could be the cause of autism:
hello sis ty for writing this wonderfull blog. its really help me to feel better n not lossing hope.sis i need help. i have a son who have little sign of autism. i didnot know where to get diagnose n n where to get the first treatment. ty so much if you can suggest me the places n things that i need to do first.
Does anyone , heard about Vision Therapy for Autism???Someone have recommend me to see a Developmental Optometrist.
Hi Jess, I’ve never done it however a few parents in Malaysia have seen a developmental optometrist. If you are a member of KL Biomed, please do a search on their archive and you’ll find it there. Marissa
i am new in this, can you send me a link??
i had 2 boys with austism- 13 and 10 yrs old.difficult controling their food taking.the 13 yrs is 98 kg and the 10 is 49 kg. anybody can help!!
I have 6year old son with ASD. He is on CF diet for about a year. I find it hard to stop his Gluten in his diet because he only eats biscuits and bread with some chicken and fish. I have tried giving him gluten free biscuits and cereals but he refuses to eat. He prefers to starve rather that eating the GF food. I am giving to him some multivits and omega 3. He is so thin and he only put on about 200gm a year. Sometimes i do feel like to giving him pediasure milk. I am so confused and worried. please advise me.
I have a son aged 6 with autism. He can write and read but he can only speak in one or two words. He is unable to response when asking him question. He will repeat the question. Can anyone help me on this?
My 2nd boy is 7 now. He was diagnosed as PDD with ADHD at age of 4. Been progressing well at a special school nearby, academically. Din do much on his food intake. Less and minimum sugar intakes of course.
Recently, the school teachers say my boy is not complying with the teaching and teachers. They claimed he’s been super hyper at school. Whilst, at home I dun see much different now and then. Teachers were saying he is a brilliant boy, yet he has behavior problems.
I brought him for IgG test last week. Result will be out in 3-4 weeks. I tried some GF products for him. I’ve been wondering that suitable diets for my boy is GFCF preferably or minimum/zero sugar? I’m confused. My boy is a picky eater.
Thank you, thank you, thank you.
Hello, this Dr Haider Al Waeli, work in IMU, just arrived with my family to Malaysia floor about two months, I had an autistic 9 years daughter, she nevered enrolled in any educational programm in the past we put her few months, in one of the special need day care in Jordan, in which there is no institutional active school to look care of autistic children.
I was happy to see a blog concern autistic children , I hope you can help me and guide me where should I put my daughter , as an educational and treatment purposes her in KL , I am living with my family in Bukit Jalil.
Finally , thank you for any help , you can provide, by the way my daughter name is Sama , ( which means the Sky), sh can not talk at all.
Thank you with my best regards
please help? my son is 5 years old with autism.he could not talk.after reading at website i have stopped dairy food and gluten free food.he had the changes later.started his eye contact and few words,but i confused where do i send him for therapies because nasom i have to wait until next year.pls advice.
latha (batu caves)
Hi, my name is kamala. Frm pj.
My son also 5years old..can v b a fren mayb v can discuss on the mater. My pon 016 2807568. Call me if u r free
hi, good evening. can pls guide me on how to change autistic child from ecololia. Talking alone. Your answer is most appreciated
There are many causes of echolalia. Both my daughters had echolalia. For us, treating yeast overgrowth and the gluten-free casein-free diet helped a lot. For some children, the echolalia could also be OCD and some OCD has been related to strep infection. Please discuss with your biomed doctor.
Thank you so much for very impressive and helpful information provided to us.
I have a son of 9 yearsold dignosed with ADHD at HUKM (Cheras) at 5+. I sent him to montesori pre-school at 5+ for a year plus. But he did not do well there. He started slow talk at 6+. Thereafter I sent him to IMC training centre for OKU till now nearly 2 yearsplus. Learning living skills and some pre-school work activities which he is able to followinstrustructions. At first he did have some improvement in speech and eyecontact. He still not good to express his feeling and sometimes he did shoutout. But lately he does not like loud noise and like to shout due to too many OKU children in centre (50 children with difference type of OKU) in a two storey corner lot.
I wish to send him to a home school nearby Subang Jaya or PJ where he will have an opportunity to study mainstream if possible.
I try to cook for him organic meal sometimes and cut down his sugar intake. He is able to interact with his father and brother but not so good with others children.
I am staying near Subang Jaya and working in PJ. I have a normal boy at 11 and study in mandarin school.
Could you give some good advise to me and I can be reached at email@example.com or
Thank you and God Bless.
I want to know full details about autism recovery . Diet plan and bio med and bio med doctor . How can you help me ?
Hi Tania, please check out the list of biomed doctors in this region https://spectrummuminmalaysia.com/2012/03/13/list-of-biomed-doctors/
dear madam marrisa …. i have a son with autism . i need to talk to you pls call 0163132162 sai tq
May I hv the biomedical treatment contacts in kl please. Tq
Dear Flo, you can find the doctors here https://spectrummuminmalaysia.com/2012/03/13/list-of-biomed-doctors/
Hi Marisa I am Sai ..I have a autism son 5yrs old. I have sent him sensory and ot
Class. I need help on biomed pls advise me what is biomed tq
Hi, this is my observation of my friend’s child. He is 4 now and doesn’t speak much except papa mama. He is very very active to the extent of strapping him down. But he is very concentrated if playing with puzzles and likes to form patterns using household stuff such as chop sticks, blocks etc. Where can we bring this kid to have a proper diagnosis and care? I’m trying to all this information and encourage my friend to go check it out. Thanks in advance.
Hi I need to discuss about my 2 year 4 mth old son im confused about his behaviour could you please contact me on 012 9917357 …would love to hear some opinion from you .pls looking fwd for your call.
Hi Liza, please email me at firstname.lastname@example.org.
Hi, Where do you send your children for the diagnostic if you suspect he has autism ? I’m living in Putra Heights
Hi spectrum mum, i have son with some symptoms of autism. All i want to know how can i help him at home. Do you have specific intense program and i also would like to bring him to biomedic doctors. I want my son to recover from this problem before he goes to std1. He is 4 now. I want to follow Marrissa’s ways. Pls provude me all the details. Thank you
Thanks for your suggestion treatment
I would like to add something about my son.
1. He has no abnormalities during given his birth. He always plays with cars or game on mobile in room in Japan. We feed him to show the cartoon or game on mobile. He likes so much and at that time he eats more. It is so difficult to feed him without this way.
2. He speaks, some words in Japan around 1-3 years. Around 2 years he spokes more words than now. When he was 2 years old we sent him at the daycare center in Japan. We continue it one year, but he did not like it.
3. If we call him by his name he never reply or may be false reply.
4. He cannot say his name till now. When he was 2 years and 9 moths at the time we are blessed with a daughter in Japan. Now she is 9 months old. Although we care him as much as we can.
5. He looks like a normal baby. I went to visit to DR. in Japan at 2, 2.5 and 3 years old, Dr. told me if you go back Bangladesh my son will be okay he told it may due to a language problem in Japan. I requested the DR and I visit another DR (autism) that DR told me that it seems to be autistic baby, but DR was needed again exam after months later at that time I need to back from Japan.
6. We back to Bangladesh (BD) on July 11 and till now they are in BD trying to recover him. Now he is 3.5 years old, but he still speaks only little words not make a sentence. So we are so much worried.
7. His appetite is very bad most of the time (6 hours every day) we spend for him and his sleeping is not good. He goes to sleep at 4/5 AM and woke up at 10 AM. Whole night he doesn’t in the bed sleepy.
8. If we tell him some words to learn/teach him it is very hard to utter/reply for him. For example, tell him (10-15 times) this water may be he will say one time and no reply any more.
9. Now he is playing with others in our house, especially we give him a chance to play with babies. This is DR’s suggestion. I think his height and weight is still normal.
Hi, my name is Wan Hanim. Frm KL.
My daughter is 5years old.. i have not send her for any assessment yet as she develop well from being non social to improved social interactions, she use to ignore me when I all her out but now she will come and run to me whenever hearing i call her, the only problem is her speech and language.She do not react well to hospital and other strange new environment, I need to seek for a home based assessment My contact no is 011-27609448 and Im a working single mother, I need an advise on how to start the education and theraphy.
HI, I am looking for a speech therapy centre somewhere in petaling jaya for my
ADHD son who is 5 years old. He only speaks afew words repeatly. Currently he attends OT therapy at HUKM. Tq
Hi Ina, you can check out Oasis Place http://oasisplace.com.my
Please i need your help! could i call you or meet you or send you email , we have a child which only recently we discover that he have Autism,, and i really need you advice …he such a wonderful boy and 6 years old but i fell that we are very late so please help me.
Hi Victoria, you can join the KL Biomed group, you can post questions to me there and meet lots of other families on the same journey. https://www.facebook.com/groups/169950843212148/
could you pass to me the name of the spicaliest doctors in Autism in Malaysia as i have been looking for 3 months but i didn’t get any
Hi Victoria, you can check the list here https://spectrummuminmalaysia.com/2012/03/13/list-of-biomed-doctors/
Kind regards, Marissa
Hi, I have a daughter of 2 year 4 months old dignosed with ASD. Would like to seek advise from you where to send her to for the therapy?
Thanks in advance.
Hi Nemeesha, my apologies for the late reply. If you are in KL and looking for a holistic approach, do check out my school http://www.brightstars.my.
I am very much impressed on what u did to help your daughters to recover from autism! All praises to God the Almighty and of course, congratulations to you and husband for making this dream possible. I am still struggling, slowly learning and gathering as much info as I can to help my 4-yr old son to recover. FYI, he is enrolled into the EIP near my place in Bangi, about 4 hrs a day, 5 times a week (20hrs per week). I read about ABA and willing to try, depending on our financial situation. Any ABA therapist that u know of nearby Bangi/Putrajaya?
Hi Azwin, my apologies for the late reply. I’m not sure about Bangi, however do join the KL Biomed group to meet other parents on the same journey. They may be able to help you with recommendation for therapists. https://www.facebook.com/groups/169950843212148/
I wish you the best of luck!
Kind regards, Marissa
I am having a child with suspected autism and I I hope to get some advice from you…
Hi Sze Ping, have you consulted with a developmental paediatrician or clinical psychologist to get diagnosed and do a proper assessment? You can consult with Dr Malinee in Pantai Hospital, Dr Ranjini in Baby & Beyond in Bangsar Village 2, Dr Rajini in Prince Court, or the psychologist in Oasis Place. Do join the KL Biomed group to meet other parents on the same journey https://www.facebook.com/groups/169950843212148/
I wish you the best of luck!
Kind regards, Marissa
how many capsule of fish oil per day
Hi Nasrin, it depends on your child’s needs. Usually I would follow the recommended dosage on the bottle, or do consult with a biomed doctor to prescribe the ideal dosage for your child. Different fish oil formulations has different ranges.
is really autism can be treated? we’re doing an awareness campaign and we hope that you can help us giving a few information about it so that our audience can have a better understanding towards our campaign. thank you in advance 🙂