We are not ignorant, we are not arrogant. We are parents looking for answers. Us and our children are the stakeholders in any autistic research that is done, not the government and not the pharmaceutical companies. If parents are to stop screaming and yelling then the researchers have got to work WITH families of autistic parents because you don’t have to prove anything to your peers you have to prove it to us. and that means that the science has to make sense to us.
We find out what we can, we research what we can and work full time and work our butts off to care for our children. This also means that while we work hard to understand the science we do not have the time to learn a science degree. This does not make us any less able to understand the facts, it only means they need to be explained to us in a different manner.
We are a far tougher audience then any peer review group and we are the only ones that matter.
When it comes to autism research parents and autistics themselves are the only ones that matter. Because if you cannot prove to us in a way we understand exactly what is the cause, if you cannot show us exactly why vaccines, etc. are not the cause, if you cant show us the data after working with us to come up with an effective research model to look at each specific case then your biggest and loudest group of critics will not go away.
We want answers. Not platitudes, not excuses and most certainly not condescension because while we may not understand science as well as the researchers, we understand autism far better then the researchers. We understand autism so well because we live with it on a daily basis. So if you tell us certain things are not relevant, we can say yes it is, we say this because we can point to our children and say look, here, this one and that one also have to deal with these specific issues. Changing the criteria to include more and more different groups does muddy the waters, and while I don’t deny the right of those newly included, it does make the research more difficult because it minimizes issues, like cognitive difficulties that used to affect a large portion of the autistic group and now in the upcoming version of the DSM it does not even appear to be recognized as part of the autistic issues.
We need to perhaps look at it slightly differently. 20 years ago autism was recognized by the rocking and almost total exclusion of any social type of activity, the exception being for some classed as savants or extremely high functioning (Rainman and Einstein types). Now my son is towards the more extreme range though he could functions on a physical and interaction level the way savants are portrayed, though we have nothing by which to measure his potential to fit into the savant category at this point. Today autistics are more commonly thought of as those like Ari Ne’eman or on the more aggressive side with regular tantrums or meltdowns. Those with cognitive difficulties and true savants are an ignored sections of the autism spectrum. The result in this is that searching for various causes of autism are focusing more on those in the newer categories (as are treatments and care options) with little or no research and treatment being done on the other end of the spectrum.
As parent’s we have all become activists. We are constantly working within the school system (whether cooperatively or antagonistically) to get the best care and education possible for our children. This activism is carried over into the research area, where many parents are calling for specific types of research to look into common theories (whether valid or invalid) to come up with some answers. The issue becomes that at 1 in 110 children born presently being expected to develop some level of autism and the appearing to be rising regularly more and more parents are getting involved and the more that get involved and the more that start looking for answers our requests are going to get difficult to ignore.
Researchers need to involve parents in the research process because as the stakeholders of all autism research we are the ones who need to be convinced that any given results of any given research is the best possible answer. Without working with parents you will find that the noise calling for more and better testing (and calling for certain types of testing) will not go away but just get constantly louder.
I know researchers may not be comfortable involving those who are not scientists in the research but this is the best way to get the message and the resultant answers to those who are most concerned with the research.