I have, through no choice of my own, been catapult into the world of autism. I do not consider myself an expert in autism. I do not consider myself well versed in autism. I am fairly adequate in the specific ways autism affects Nicholas. And I am fairly aware of what autism may look like and the kinds of treatments out there. I also know about the many studies being published daily, it seems, showing where autism research is focused since they inevitably end up on my newsfeeds either shared by pages I follow, friends, or sponsored stories.
And they make me mad.
The vast majority of these studies go something like this: "<Insert some common variable> in pregnant women has been linked to autism."
Based on what is known of famous historical figures, it has been determined that at least some of them were probably on the spectrum. Of course we can never know for sure, a diagnosis for autism cannot be made out of purely anecdotal evidence, but there is a pretty good level of certainty based on what is known. This suggests that there were likely more individuals with autism during these periods of time whose lives were not well documented. Many of them could have easily died as young children, a lack of awareness of danger is a common trait of autism. It seems that autism has been around for a very long time and could just be part of the human species like left handedness.
If you look at the list of suggested people; Newton, Einstein, Mozart, Michelangelo to name a few, it seems that these people are quite important to our advancement as a species. So why is everyone focused on finding a cause? A cause is only good for preventing and finding a cure. And since it has also been well established that autism is highly genetic, any type of prevention or cure would include some sort of genetic manipulation.
No, not all children with autism grow up to be great historical figures, they don't all grow up to make a huge, positive impact on the human race. Many are non-verbal and stuck in eternal childhood. But this is changing. Even the most severely of autistic children can make great strides with the proper interventions. Children that would have been doomed to never speak more than a handful of words are now able to learn many words and even phrases if not with their own voice through sign language or PECS. The potential of an autistic child is greater today than it was 10 years ago and even greater than it was 20 years ago. Funding needs to focus on increasing this potential!
Therefore, personally, this is where I'd love to see the funding go to:
Early Detection
Today, while a woman is pregnant, her unborn child can be screened for various genetic disorders such as spina bifida, down syndrome, and other birth defects. Research needs to go into developing a screening for autism as well. And for those that do not get the screening or they get a false result (Nicholas tested positive for down syndrome twice while I was pregnant, that's two false positives), and while we wait for such screening, screening tests need to be developed for newborns and infants. Many parents, including myself, have said that their babies had certain quirks that seemed odd but not concern worthy, even when mentioned to the pediatrician, that make sense in retrospect. It has been established that the earlier an intervention begins the higher the chance of them catching up to their peers.
Intervention, Supports, and Therapies
The big thing in autism is ABA therapy. It has been found to be very helpful with behaviours of autistic children. There is also quite a few people that disagree with the methodology. Other than that you have speech, occupational, and physical therapy as additional supports depending on what the child's needs are. These are great and needed. But there needs to be more. There needs to be more autism specific supports, especially in OT. There needs to be something to help these children's social skills. Something structured that will teach the children skills of interaction and teach the parents/caregivers how to aid their children in social situations. There needs to be more supports for the parents/caregivers. Not just in how to parent and raise these children but social supports for the stress and feeling of isolation that comes with it.
Universal Access
This is probably the most important thing funding needs to go towards. Living in California I have had access to doctors and The Regional Center. Even with these resources, getting all the needed therapies and supports for Nicholas has been difficult. I was shocked to learn that as much as there is here in California, most of the country does not have the same or equivalent resources. After parents have fought with doctors over what may be wrong with their children they then have to wait months for an appointment to get evaluated. And if they do get diagnosed with autism they may only be able to offer speech and occupational therapy. In some places even these services are hard to come by. This can't be acceptable. Access to a diagnosis and treatments within a reasonable amount of time must be available to everyone. It is not only a disservice to these children and their families but to our society as a whole. When these children get the services they need we all benefit from the adults they become. And it's the humane thing to do.
Nicholas will likely not grow up to be someone comparable to Einstein or Mozart. He may not grow up to be able to live on his own. And I'm ok with that. But I am not ok knowing that more can be done for children like Nicholas and it is not being done because funding is going to find a cause in hopes of finding a cure and prevention. And if I'm a parent that doesn't know much about autism and a doctor tells me my child has autism and there is a way to cure it, unless there are severe risks involved, I'd tell the doctor to start the cure immediately. And in the process I may have killed the next Einstein or Mozart. An all out cure or prevention would deprive our world of these genius minds. And humanity of it's future.
No comments:
Post a Comment