Autism, the facts
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behaviour. It is four times more likely to affect males than females and these signs usually begin before a child is three years of age.
Autism can be diagnosed using the Diagnostic and Statistical Manual of Mental Disorders. This manual lists several symptoms and impairments commonly seen in autism, for example:
* Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
·* Difficulties to develop peer relationships appropriate to developmental level.
·* Stereotyped and repetitive use of language or distinctive language
·* Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
* Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting or complex whole-body movements).
Autism is said to be the fastest growing special-needs disorder in the world. Although it is hard to find exact statistics on autism, researchers estimate that autism affects about 1 in 110 children while leukemia and AIDS affect 1 in 1,200 and 1 in 300 children respectively.
It has also been estimated that more than 40,000 children and adults suffer from autism in Sri Lanka and the numbers are dramatically increasing each year. Latest statistics have shown that 1 in 83 children in Sri Lanka will be diagnosed with autism! Unfortunately, unlike in other countries autism is unheard of by majority of the population in Sri Lanka. Hence, there are hardly any facilities or proper treatment provided for these children and due to lack of awareness they are often misunderstood by the community.
Treatments for Autism
Although there is still no real "cure" for autism, there is a lot that you can do to help your child to reach the maximum of his/her potential to live a happy and maybe even an independent life. There are many treatment programs available. in U.S. you will find what ever you are looking for. However in Sri Lanka the options are still very limited
Advice for parents of (newly diagnosed) children with autism
'Reprinted with permission from www.SpectrumMumInMalaysia.com Thanks Marissa for your great advice! You are such an inspiration to me!
1. Start the diet immediately. Gluten-free, casein-free, soy-free, egg-free. Omit all gluten (wheat, oats, rye, barley) and casein (cow and goat milk-based products, milk, yoghurt, cheese, butter) Stop soy too as soy’s biochemical properties are very similar to casein, plus majority of ASD kids test very high intolerance to soy. Most ASD kids also have very high intolerance, if not allergies, to eggs. Go organic when possible, but it’s not a deal breaker. If budget is an issue, it’s more important to start on biomedical treatments first. But start using organic chicken if possible. Very important to reduce or stop processed, packaged foods and drinks that contains preservatives, colorings, flavorings, artificial sweetener, caffeine. These really affect our kids and behavior!
2. Make an appointment with a biomedical doctor NOW. As far as we know there are no Biomed doctors in Sri Lanka but there are good ones in India, Singapore, Malaysia, Hong Kong, Bangkok and Indonesia. You can consult with biomedical doctors (medical practitioners who have attended DAN or MAPS training) as well as other holistic practitioners eg chiropractors, craniosacral therapists, naturopaths, homeopaths.
3. If you can’t afford or are not able to consult a doctor asap, there are several supplements you can start on now. We are no medical doctors and cannot give medical advise. Please consult with a medical doctor to manage your child’s treatment. In our personal opinion, most ASD children will benefit for these supplements.
A. Cod liver oil
B. Probiotics
C. Mega dose B6 or B Complex
D. Vitamin C
E. Magnesium
F. Zinc
G. Calcium
H. Digestive enzymes
I. Epsom salt baths
4. Choose a therapy- the best would be intensive, high-frequency 1 on 1 therapy. Some suggestions for therapies:
A. Son-Rise
B. ABA
C. RDI
D Ocupational Therapy
E. Sensory Integration
F. Speech therapy
G. Auditory Integration Therapy
5. Get connected, get educated, start surfing- join yahoo groups and other online forums to connect with other parents. There are many support groups too that cater for parents of special needs children. Websites such as www.autism.com, www.talkaboutcuringautismnow.org and www.generationrescue.org are super-helpful. There are a list of books you can read. If you can afford it, attend a biomedical conference such as the DAN! Conference or Autism One.
6. Special advice for mums- take care of your physical, mental and emotional health. Don’t be afraid to ask for help. Don’t forget to eat well, get enough sleep and take your supplements. B complex, Vitamin C, cod liver oil and probiotics are a must. Don’t forget your minerals too, especially magnesium as it has relaxing properties. If you have sleep issues, use melatonin. If you experience depression, take 5-HTP. This helps with sleep too. If you have anxiety issues, L-Theanine does wonders. If your feel constantly tired, experience frequent night awakenings, insomnia or sleep too much, fuzzy-thinking and unfocused, it is possible you have a yeast infection. Considering that 90% of ASD children have Candida overgrowth, stands to reason that the parents usually have them too. By taking care of your health it can save you from depression.
7. Don’t forget to nourish your soul- go for a massage, go to a salon for a hair wash, go for a swim, go to the cinema, walk in the park, afternoon nap or coffee with a friend. Try to do something just for yourself once a week.
Otherwise, schedule a mini-holiday for yourself without the children at least once every 6 months. Send the kids to the grandparents for 1 night, or you leave your husband or friends to babysit the children for 1 night while you check into a hotel for a bubble bath and a good night’s sleep. 24 hours to rest, eat and sleep can recharge you and you come home to your kids smilling and all Zen. Your family can survive without you for 24 hours. Your kids may cry, your husband may get angry, but in the long run, it’s worth it. The kids cry even if you’re there, your hubby picks a fight even if you’re chained to the house and kids. This is something you can look forward to when times are hard. Without you, you child will not recover.
A journey on the way to recovery!
Expect this to be a journey full of challenges and pitfalls. But also expect pleasant surprises and wonderful progress. Autism never stops, it never takes a day off, it never gives us a break. Our children live in Autism 24 hours a day, yet they are not able to complain. Treat our children with kindness and respect. Autism is not a psychiatric disorder. Treatment with mind-numbing psychotic medication should only be used when all else has failed. Treat the underlying medical illness, a healthy body means a healthy mind. If your child has chronic constipation, diarrhea, unable to eat, frequent infections and illness, do not make Autism an excuse not to treat your child. Not everything in Autism is behavioral, some are medical conditions that needs medical treatment. Every child deserves good health, Autism or not. Everyone deserves good health and medical treatment during illness, whether they are young or old.
Do the diet 100%. Yes, there are other kids eating junk food and bread in front of your child. Your child WILL try to eat forbidden foods. Yes, other family members don’t want to follow the diet. Yes, grandparents will smuggle a bit of ice cream in. There will be transgressions, it happens. Start the diet again. Find a way to make it work. Eventually, the diet becomes 2nd nature.
Make it a habbit that you, yourself alsoI take supplements daily and make personal time for yourself regularly.Wou will feel all the better to face the challenges that Autism throws at us everyday. Not everyone will have the resources to afford this, not everyone is blessed with helpful family members or friends who can share the burden and give us the break we need. Manage your resources wisely, however little we may have. Somehow, there is always a few hundred rupees to afford for an amazing hair wash. Bribe or beg for babysitting help, whatever works. It is hard to strive for recovery when the mum is in deep depression and under extreme stress, the goalpost seems further away
when we feel bleak, dejected and pessimistic.
If you are married, take care of your relationship. You are not the only one grieving, your spouse is too. Along the way, you will lose your sense of humour. Try to regain that, you will need it. Have patience. Learn to forgive.
Surround yourself with positive, supportive and encouraging people. These are the ones who will stay with you along the way and cheer you on. Don’t waste your precious time and energy on negative people who will only hold you back and make you feel worthless. They will drag you down instead of helping you up. To the ones who make you angry or say hurtful things, just smile and walk away. Don’t scream at others. Screaming doesn’t help the situation, it only makes things worse. If you have done wrong, apologize. Treat your therapist, consultant, doctors and nurses with respect. They are there to help your child.
Fighting only zaps your energy. Don’t fight in front of your children, they can hear you and remember what you said. Autistic children are not deaf. Don’t forget to hug and kiss your child. Even if you think they’re not listening, always tell them how proud you are of them. Love them and kiss them everyday, this is better than any therapy or medication.
Don’t forget to pray. Only pray for good things. Worrying is praying for bad things. So, pray for good things. Set realistic goals. Give yourself small challenges. Don’t sweat the small stuff, look at the big picture. Celebrate the victories, small or big. Mourn the losses, but pick yourself up and keep going to the next level. Think big, aim high. Don’t underestimate your special child, you might just be pleasantly surprised. Don’t let anybody hold you or your child back.
Remember to go through this journey with grace and dignity. Some of our children are voiceless, it is up to us to speak up for them. Don’t forget why we do this, out of love for our children. A smile goes a long way, a thank you even longer. Don’t forget those who have helped you along the way, pay it forward in the hopes that you too can help the next new parent that comes your way.
Desiree Jayakody
Autism mom and autism advocate CMW/founder The Dolphins parent support group
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behaviour. It is four times more likely to affect males than females and these signs usually begin before a child is three years of age.
Autism can be diagnosed using the Diagnostic and Statistical Manual of Mental Disorders. This manual lists several symptoms and impairments commonly seen in autism, for example:
* Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
·* Difficulties to develop peer relationships appropriate to developmental level.
·* Stereotyped and repetitive use of language or distinctive language
·* Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
* Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting or complex whole-body movements).
Autism is said to be the fastest growing special-needs disorder in the world. Although it is hard to find exact statistics on autism, researchers estimate that autism affects about 1 in 110 children while leukemia and AIDS affect 1 in 1,200 and 1 in 300 children respectively.
It has also been estimated that more than 40,000 children and adults suffer from autism in Sri Lanka and the numbers are dramatically increasing each year. Latest statistics have shown that 1 in 83 children in Sri Lanka will be diagnosed with autism! Unfortunately, unlike in other countries autism is unheard of by majority of the population in Sri Lanka. Hence, there are hardly any facilities or proper treatment provided for these children and due to lack of awareness they are often misunderstood by the community.
Treatments for Autism
Although there is still no real "cure" for autism, there is a lot that you can do to help your child to reach the maximum of his/her potential to live a happy and maybe even an independent life. There are many treatment programs available. in U.S. you will find what ever you are looking for. However in Sri Lanka the options are still very limited
Advice for parents of (newly diagnosed) children with autism
'Reprinted with permission from www.SpectrumMumInMalaysia.com Thanks Marissa for your great advice! You are such an inspiration to me!
1. Start the diet immediately. Gluten-free, casein-free, soy-free, egg-free. Omit all gluten (wheat, oats, rye, barley) and casein (cow and goat milk-based products, milk, yoghurt, cheese, butter) Stop soy too as soy’s biochemical properties are very similar to casein, plus majority of ASD kids test very high intolerance to soy. Most ASD kids also have very high intolerance, if not allergies, to eggs. Go organic when possible, but it’s not a deal breaker. If budget is an issue, it’s more important to start on biomedical treatments first. But start using organic chicken if possible. Very important to reduce or stop processed, packaged foods and drinks that contains preservatives, colorings, flavorings, artificial sweetener, caffeine. These really affect our kids and behavior!
2. Make an appointment with a biomedical doctor NOW. As far as we know there are no Biomed doctors in Sri Lanka but there are good ones in India, Singapore, Malaysia, Hong Kong, Bangkok and Indonesia. You can consult with biomedical doctors (medical practitioners who have attended DAN or MAPS training) as well as other holistic practitioners eg chiropractors, craniosacral therapists, naturopaths, homeopaths.
3. If you can’t afford or are not able to consult a doctor asap, there are several supplements you can start on now. We are no medical doctors and cannot give medical advise. Please consult with a medical doctor to manage your child’s treatment. In our personal opinion, most ASD children will benefit for these supplements.
A. Cod liver oil
B. Probiotics
C. Mega dose B6 or B Complex
D. Vitamin C
E. Magnesium
F. Zinc
G. Calcium
H. Digestive enzymes
I. Epsom salt baths
4. Choose a therapy- the best would be intensive, high-frequency 1 on 1 therapy. Some suggestions for therapies:
A. Son-Rise
B. ABA
C. RDI
D Ocupational Therapy
E. Sensory Integration
F. Speech therapy
G. Auditory Integration Therapy
5. Get connected, get educated, start surfing- join yahoo groups and other online forums to connect with other parents. There are many support groups too that cater for parents of special needs children. Websites such as www.autism.com, www.talkaboutcuringautismnow.org and www.generationrescue.org are super-helpful. There are a list of books you can read. If you can afford it, attend a biomedical conference such as the DAN! Conference or Autism One.
6. Special advice for mums- take care of your physical, mental and emotional health. Don’t be afraid to ask for help. Don’t forget to eat well, get enough sleep and take your supplements. B complex, Vitamin C, cod liver oil and probiotics are a must. Don’t forget your minerals too, especially magnesium as it has relaxing properties. If you have sleep issues, use melatonin. If you experience depression, take 5-HTP. This helps with sleep too. If you have anxiety issues, L-Theanine does wonders. If your feel constantly tired, experience frequent night awakenings, insomnia or sleep too much, fuzzy-thinking and unfocused, it is possible you have a yeast infection. Considering that 90% of ASD children have Candida overgrowth, stands to reason that the parents usually have them too. By taking care of your health it can save you from depression.
7. Don’t forget to nourish your soul- go for a massage, go to a salon for a hair wash, go for a swim, go to the cinema, walk in the park, afternoon nap or coffee with a friend. Try to do something just for yourself once a week.
Otherwise, schedule a mini-holiday for yourself without the children at least once every 6 months. Send the kids to the grandparents for 1 night, or you leave your husband or friends to babysit the children for 1 night while you check into a hotel for a bubble bath and a good night’s sleep. 24 hours to rest, eat and sleep can recharge you and you come home to your kids smilling and all Zen. Your family can survive without you for 24 hours. Your kids may cry, your husband may get angry, but in the long run, it’s worth it. The kids cry even if you’re there, your hubby picks a fight even if you’re chained to the house and kids. This is something you can look forward to when times are hard. Without you, you child will not recover.
A journey on the way to recovery!
Expect this to be a journey full of challenges and pitfalls. But also expect pleasant surprises and wonderful progress. Autism never stops, it never takes a day off, it never gives us a break. Our children live in Autism 24 hours a day, yet they are not able to complain. Treat our children with kindness and respect. Autism is not a psychiatric disorder. Treatment with mind-numbing psychotic medication should only be used when all else has failed. Treat the underlying medical illness, a healthy body means a healthy mind. If your child has chronic constipation, diarrhea, unable to eat, frequent infections and illness, do not make Autism an excuse not to treat your child. Not everything in Autism is behavioral, some are medical conditions that needs medical treatment. Every child deserves good health, Autism or not. Everyone deserves good health and medical treatment during illness, whether they are young or old.
Do the diet 100%. Yes, there are other kids eating junk food and bread in front of your child. Your child WILL try to eat forbidden foods. Yes, other family members don’t want to follow the diet. Yes, grandparents will smuggle a bit of ice cream in. There will be transgressions, it happens. Start the diet again. Find a way to make it work. Eventually, the diet becomes 2nd nature.
Make it a habbit that you, yourself alsoI take supplements daily and make personal time for yourself regularly.Wou will feel all the better to face the challenges that Autism throws at us everyday. Not everyone will have the resources to afford this, not everyone is blessed with helpful family members or friends who can share the burden and give us the break we need. Manage your resources wisely, however little we may have. Somehow, there is always a few hundred rupees to afford for an amazing hair wash. Bribe or beg for babysitting help, whatever works. It is hard to strive for recovery when the mum is in deep depression and under extreme stress, the goalpost seems further away
when we feel bleak, dejected and pessimistic.
If you are married, take care of your relationship. You are not the only one grieving, your spouse is too. Along the way, you will lose your sense of humour. Try to regain that, you will need it. Have patience. Learn to forgive.
Surround yourself with positive, supportive and encouraging people. These are the ones who will stay with you along the way and cheer you on. Don’t waste your precious time and energy on negative people who will only hold you back and make you feel worthless. They will drag you down instead of helping you up. To the ones who make you angry or say hurtful things, just smile and walk away. Don’t scream at others. Screaming doesn’t help the situation, it only makes things worse. If you have done wrong, apologize. Treat your therapist, consultant, doctors and nurses with respect. They are there to help your child.
Fighting only zaps your energy. Don’t fight in front of your children, they can hear you and remember what you said. Autistic children are not deaf. Don’t forget to hug and kiss your child. Even if you think they’re not listening, always tell them how proud you are of them. Love them and kiss them everyday, this is better than any therapy or medication.
Don’t forget to pray. Only pray for good things. Worrying is praying for bad things. So, pray for good things. Set realistic goals. Give yourself small challenges. Don’t sweat the small stuff, look at the big picture. Celebrate the victories, small or big. Mourn the losses, but pick yourself up and keep going to the next level. Think big, aim high. Don’t underestimate your special child, you might just be pleasantly surprised. Don’t let anybody hold you or your child back.
Remember to go through this journey with grace and dignity. Some of our children are voiceless, it is up to us to speak up for them. Don’t forget why we do this, out of love for our children. A smile goes a long way, a thank you even longer. Don’t forget those who have helped you along the way, pay it forward in the hopes that you too can help the next new parent that comes your way.
Desiree Jayakody
Autism mom and autism advocate CMW/founder The Dolphins parent support group