Autistic Children

[jonathanfrance]

For four years now, our family has attended a one week camp in Georgia, USA for families with children with autism. 25 families have attended each year and some of us have become quite close. One of the phrases we would recite to keep our spirits up was "When you've seen one autistic child, ... you've seen one autistic child." By that, we would remind ourselves that while kids on the autism spectrum may share similar behaviors, each child is truly unique. Everyone with a child on the spectrum needs to remember this, especially when considering exotic treatments. The vast majority of positive results from these "treatments" are reported as anectodes -- "my child responded well to 'x' and now he is happy." In fact, there is no good science behind any of these studies -- only stories of improvements from happy parents of unique children. Just because there is an apparent success for one child (with no story about what happened six months later) does not mean anything when applied to your child. (BTW, I have a Ph.D. in Organic Chemistry and conducted research in cancer chemotherapy. I have the credentials to take a critical look at these reputed "cures.")

I have looked in the eyes of desperate parents who only want the best for their children. (I've been there myself.) All of the parents of older children (say over the age of 10) that I have met have come to the conclusion that things like HBOT and gluten free are at best a waste of money and at worst a source of added harm. We recognize that we are no longer looking for a cure. Rather, we are looking for ways to teach our children how to fit in. ABA and other therapies that involve repitition and learning how to cope with unwanted distractions do not cure the condition. But they give our children tools to cope with their environment.

My biggest concern is that my son lacks the ability to read social cues and just can't manage himself properly in an ordinary social situation. Now he is 13, but I worry about what will happen to him when my wife and I can no longer manage his life. To that end, I have formed a nonprofit corporation that will build and operate an assisted living facility for 50 adults with autism and other special needs. The main feature of the facility will be the presence of a social director who will act as a surrogate parent and encourage the residents to interact with one another.

[ohiodad]

jonathanfrance -

I need to reiterate that there are too many people out there who want to make a fast $ off of the fears of parents. In my experience and in the experience of the three dozen families I have met who have an autistic child, there is no easy or miraculous cure. As I noted earlier, each autistic child is different. There are many combinations of behaviors that produce a diagnosis of autism. That means there are probably many different underlying causes for each child. Yet, a common thread for all these children is an inability to filter out extraneous sensory information. Our children treat background noise and forground noise with equal weight. Physical therapies designed to help a child decide what needs his attention and what can be ignored seem to help them cope with every day life. It's a long and slow process, but it does offer real improvement.

The original poster was asking what might be done for her child. I hold to my advice to avoid people who offer miracles.

[jonathanfrance]

For four years now, our family has attended a one week camp in Georgia, USA for families with children with autism. 25 families have attended each year and some of us have become quite close. One of the phrases we would recite to keep our spirits up was "When you've seen one autistic child, ... you've seen one autistic child." By that, we would remind ourselves that while kids on the autism spectrum may share similar behaviors, each child is truly unique. Everyone with a child on the spectrum needs to remember this, especially when considering exotic treatments. The vast majority of positive results from these "treatments" are reported as anectodes -- "my child responded well to 'x' and now he is happy." In fact, there is no good science behind any of these studies -- only stories of improvements from happy parents of unique children. Just because there is an apparent success for one child (with no story about what happened six months later) does not mean anything when applied to your child. (BTW, I have a Ph.D. in Organic Chemistry and conducted research in cancer chemotherapy. I have the credentials to take a critical look at these reputed "cures.")

I have looked in the eyes of desperate parents who only want the best for their children. (I've been there myself.) All of the parents of older children (say over the age of 10) that I have met have come to the conclusion that things like HBOT and gluten free are at best a waste of money and at worst a source of added harm. We recognize that we are no longer looking for a cure. Rather, we are looking for ways to teach our children how to fit in. ABA and other therapies that involve repitition and learning how to cope with unwanted distractions do not cure the condition. But they give our children tools to cope with their environment.

My biggest concern is that my son lacks the ability to read social cues and just can't manage himself properly in an ordinary social situation. Now he is 13, but I worry about what will happen to him when my wife and I can no longer manage his life. To that end, I have formed a nonprofit corporation that will build and operate an assisted living facility for 50 adults with autism and other special needs. The main feature of the facility will be the presence of a social director who will act as a surrogate parent and encourage the residents to interact with one another.

[jonathanfrance]

Thank you for your comment. I am myself researcher and I have read many articles about autism. It is my passion. I have to tell you that I don't have autistic kid. I am as mom -I understand well other moms. My kid is teenager and I have hard time to talk to him now. But I know that one day he will come back to me when his hormone (metabolism) is back to equilibrium. This is biochemistry.

As working in the medical analysis lab and see biological results of ASD kids around the world so I know there are something wrong and we should be able to help this back to normal.

You have also to accept that there are also many people that would like to help these kids and familes. I don't see the reason why we need to be negative. Life is full of joy and miracle. We have to help each other instead of fighting. Time will tell you the best.

Thailand is not rich country and we don't have money to take care of these kids and their future. So we need to see all idea and will try to protect and detect before it is too late.

[SimplyABA]

Hi there, I may be able to help families in Thailand with Autism. I myself have a son who was diagnosed with moderate level Autism 3 years ago, and using ABA (Applied Bahavioural Analysis) he is now in mainstream education unaided, and developmentally and socially in line with his peers. As such, I now run a company to assist other parents in Thailand by setting up ABA Programs for other children. I hope this may help some parents out there who are experiencing difficulties.