The Most Important Remedy
There has been much said about finding a cure for autism, resulting in two distinct schools of thought. On one hand, there’s the clinical researchers and those who support them, such as Autism Speaks. Conversely, there are those who take the position that no cure is needed, only acceptance, such as Autism Self Advocacy Network. We will examine each here.
For a Cure
The citizen who is in the mid-to-extreme range of the spectrum suffers as a result of their autism and wants a cure found. They often have troubling conditions which accompany their autism, such as bipolar disorder, gastrointestinal conditions, seizures, visual, audio and other conditions which impact their lives adversely. These people need a cure, if not for the autism itself, for these additional affects.
Life is intense and difficult for these people, their families and caregivers and so a cure is critical for each of these conditions. The right cure can make a world of difference for these people, so improved treatment for, and cures for autism’s supplemental conditions is needed.
Another cure they hope for is to restore verbal communication among those who are non-verbal. Giving voice to their needs is essential to their success in life. Also, restoration of hearing to those with autism who don’t hear, but whose hearing isn’t medically failing.
Yet another is to provide children showing signs of autism with care and treatment that improves IQ, ensuring that even those who might have had an IQ of less than 55, would improve to at least 80, helping them to live better lives.
People with High Functioning Autism (HFA) and Asperger’s (AS) often feel their autism isn’t a problem, only its negative effects such as meltdowns and social interactions, which many are able to treat medically with prescribed drugs and therapy. This group seeks only acceptance. In some ways, they ignoring the existence of those with severe autism who cannot function in regular activities without special care. They believe that spending excessively on attempts to cure autism is pointless.
They want little more than for society to accept their condition, and to give them equality with those who are not autistic. In many ways, based on their place on the spectrum, they too are correct in this; society must accept people with all degrees of autism as equals.
As for a cure for autism itself, we’re not sure there is even a way to develop such a remedy, and only hope we’re wrong about that. As we see things, autism, being a genetically caused spectrum disorder, is in the genes of every person affected. While there may be a gene or chromosome identified for basic autism, its diversity is so vast that to prevent the condition will likely require a unique cure for each child.
There’s an estimate that in the US, there may be as many as 60 million people living with autism, many of them undiagnosed. Since the condition is so individualized, that means there may be 60 million permutations of the genetic matrix. If a cure were found for the core genetic cause, what about the variables? Would a person be born without autism, but still suffering the supplemental conditions like seizures or gastrointestinal difficulties? We have to ask, whether the quality of life for these ‘cured’ people would be good?
Can one cure a person currently living with autism? We don’t know, but from a common sense perspective, probably not. Thus in general, the cure is really about prevention. Talk, therefore, of cures is really misleading.
How can one reverse a genetic condition developed before birth? Even if an external circumstance or action influenced the advancement of autism in a child, the autism had to be present in the child to begin with, as nothing can change the child’s genetic composition. These are questions which are missing from the discussion.
The best science could possibly do would be to find a preventative measure both parents could take prior to conception, and that would only work for planned pregnancies. Science has already found potential steps to reduce the risk of autism, but people don’t always follow these now. We’re not sure the preventive measures by medication for example would be followed.
That said, we want to see a cure, too. Desperately. Not just for autism’s root, but for every ailment that accompanies it. We’ve seen, first hand, many people suffering extremes of the disorder that require institutional care. If this can be prevented, it should be. If medications can be invented to fix the ancillary conditions that all people with autism suffer, we’re all for it. Even if the medication can only reduce their suffering, we support that research.
We are concerned about prenatal fetal testing, which some believe is the way to identify autism early in order to treat and prevent. Our fear is that parents discovering the presence or markers for autism early in pregnancy may elect to abort, even if the testing returned a false positive, or if the autism was HFA or AS. We don’t know, and it’s highly likely science doesn’t either, if such testing could accurately predict the place a child would ultimately have on the spectrum.
What happens if parents abort one or two pregnancies and give up trying, believing that any child produced of the union is predestined to be autistic? Will they live with this, divorce, adopt, keep trying? We don’t know, but science may not think of these consequences, nor will those supporting the research. Again, we are not against research for a cure, but believe there are so many questions that need to be answered, and so many options that must be planned for beforehand; so many considerations we don’t hear or see in the debate.
Our conclusion is that both camps are right, and both have their drawbacks, but neither are asking the hard hitting question: what are the consequences of a cure or prevention, or of doing no research? Meanwhile, we hold that each person with autism is a citizen, with the same rights as anyone else, and we fight for acceptance, with the full understanding that is more likely to help those higher on the spectrum than lower. We fight for protections, for all autistic citizens, no matter their place on the spectrum, and dare to challenge the prejudice and mistreatment given to all affected.