Two Words of Caution Regarding Research, Science and Neurodiverse ASD Relationships

First, so you know where I’m personally coming from, I am a person who respects others of all faiths. I am also not myself personally a faith-based person. Mostly, I’ve learned not to spend my life energies focusing on family, love, and being as good of a person as I can.

I begin with that statement because this post is about understanding what science and individual research projects can and can’t tell us and I do not want it to be mistaken as a science vs. religion post or a science vs. faith post. When I speak about the limitations of science, I’m simply doing just that: I’m speaking about the limitations of science. That’s all. I support science and I support everyone in their individual faith practices and traditions. And I support atheists, too. I support people.

Science has made obvious leaps and bounds in the last several years. We’re using fMRIs to scan the brain to measure what parts of the brain are using the most oxygen when during certain mental tasks. We’re using technologies like Transcranial Magentic Stimulation and sophisticated behavioral therapies based on decades of psychological research that has been synthesized with modern IT systems to develop individualized treatment programs for children.

In some fields, research is just beginning. In others, such as the applied behavioral psychology that has led to the use of ABA therapy for children with autism, there is such a preponderance of evidence that it is difficult for anyone to credibly deny that ABA therapy is helpful. That doesn’t stop well-qualified people who don’t understand behavioral psychology from discounting behaviorism, how behavioral psychology might be particularly applicable in helping people with autism or how it has been proven in multiple contexts that span far beyond autism. Books and books are written on the subject of what is wrong with behaviorism — and are, in general, written by smart people making false assumptions about what the science and research does and does not mean.

False assumptions about science are very easy to make. In order to really understand most fields, one must truly be a subject matter expert to speak accurately about the science. Outside of individual expertise, we’re all just amateurs reading blogposts and news articles about what the science “means.” And blog posts and media articles usually have one slant — they’re written as clickbait. They sensationalize scientific findings from individual studies and promote the studies as if some concept has unequivocally been “proven” or “disproven.”

Sometimes theoretical concepts that should used as the basis upon which to design research methodologies are confused for research without the public understanding the limitations of theories, the purposes of hypotheses and the differences between theories, hypotheses and empirically gathered data.

We can debate about it online — and possibly some of you will — or we can use what understandings we have now in an effort to improve our own families and lives. The former will result in long discussions and arguments and the formation of battling coalitions and organizations. The latter has the potential to change lives.

The reality is, that with a few exceptions, most of science and research in the field of autism — and most definitely in the field of mixed-neurological marriage and mixed-neurological close family relationships — is so new that it doesn’t unequivocally tell us much of anything. It offers new ideas and insights upon which more research projects can be developed. And once those research projects are complete, still more research projects must be developed and implemented. Results must be found, analyzed and then built upon again. Science is an iterative process that takes years and the cooperative work of many people seeking to better lives despite their many agreements and disagreements.

Yes, ABA therapy really has stood the test of time and evidence. Yes, fMRI technology really does measure brain activity and no doubt can do a better job of diagnosing autism than human interviews and human counts of DSM criteria that throw patients into a rough ballpark and give adults the opportunity to try to convince clinicians that they either do or don’t qualify for a diagnosis of autism. I’m excited to see what comes of Transcranial Magnetic Stimulation and many of the other projects seeking to help individuals and families with autism today.

All of that said, no individual research project can stand on its own — not mine or anyone else’s. Studies must be performed and then performed again. Methodologies should be tweaked and then tweaked again. New research projects that replicate old research projects must be performed.

In the end, online discussions and the work of activists for or against any cause often lend themselves to conversations led by confirmation bias. Confirmation bias occurs when we are exposed to ideas and even research results that conform to our current beliefs about how the world works. We see those ideas and are attracted to them. We find one research project that supports our view of the world and we promote that one project as if it is the full “truth” about the world rather than recognizing it as what it really is: one research project seeking to explain something so that other research projects can be scaffolded on top of it.

In conclusion, I offer two words of caution that specifically relate to discussions about mixed-neurological marriages and close family relationships:

  1. Be careful about citing any one study or piece of research to draw any one foregone conclusion. If you are doing this, you are probably a victim of your own confirmation bias. Keep an open mind. The reality is that not nearly enough research has been done on the subject of mixed-neurological marriage and close family relationships and much of what has been done is qualitative rather than quantitative. There is so much more that must be learned, studied and proven. We are treading on the first few stepping stones of a long, long path that reaches out into the distance beyond what our eyes can currently see.
  2. And at the same time, be careful not to discount your own individual life experiences and gut feelings. It’s okay and even important for you to strongly support your own perspective even if there ins’t already enough research out there to support it, too. You know you and speaking your own truth without quoting research to back it up is perfectly acceptable and is an important part of having your own voice. Strength comes from inner conviction. There is no need to doubt yourself so strongly that you cannot move forward before enough research is done.

Yes, I recognize that these two words of caution are seemingly contradictory. It is my hope that on closer observation it will be recognized that what we are calling for at REAL is more research and more awareness of mixed-neurological marriages and close family relationships. Autism is common and the dynamics of mixed relationships have a major impact on mental health around the world. It is time that mixed relationships are recognized, more thoroughly studied and that the perspectives of typically developing partners and typically developing family members are weighted equally to the perspectives of those of autism.

It is time that the REAL strengths and weaknesses of autistic minds and typically developing minds and their disparate impacts on social interactions, communication, and social understandings in marriage and close family relationships are fully acknowledged — not in an attempt to deprecate or harm anyone, but in an attempt to provide services and help.

Otherwise, the most vulnerable parties may be left without the support and assistance they need and deserve.

And often, these vulnerable parties include children in the very first stages of long lives that will be affected by their own autism or the autism of their parents or siblings. This is too important to be ignored or silenced by criticism and contentious, circular online debates.

If you have autism, take action to make your own life better. Get the help you need.

If you’re typically developing, take action to make your own life better. Get the help you need.

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