Does a Formal Diagnosis Really Make a Difference?

I knew that most of the adult population with high-functioning autism was not diagnosed. I also knew that the existent body of knowledge concerning women in mixed neurological relationships was mainly based on women’s accounts of their personal experiences with intimate partners who were not formally diagnosed on the autism spectrum. That’s exactly why I decided to explore the topic empirically in my doctoral research, to apply to women whose partners were formally diagnosed and to supply valid and reliable evidence as to what these women were going through. I thought that this issue was not being treated seriously by professionals because scientific data was lacking, and I was determined to change the situation. My original intention was to have two groups: a research group of women whose partners were formally diagnosed with autism and a control group of women in relationships with typically developing men.

When I started spreading the invitation to participate in my research in forums, web sites and Facebook groups, I had no idea what was going to happen. And what happened was amazing and surprising. Women from all over the world showed great interest in my research, expressed their willingness to participate and offered to assist in any way they could. I got many supporting emails with touching personal stories from women who were happy to have someone interested in exploring their physical and mental wellbeing. The wide scale interest and support were beyond my wildest expectations.

Another surprising thing that happened, was that I received a lot of complaints from women who wanted to participate in the research, but their partners did not undergo a formal diagnosis. They expressed their frustration, argued that it wasn’t fair that professionals did not want to hear their voice and asked me to consider their inclusion in the research, which I did. It was obvious to me that they were completely right. So eventually, my research population included 648 participants in three groups: women whose partners have been formally diagnosed with Autism women who suspected their partners to be on the autism spectrum, without having a formal diagnosis and women in the control group, with normative partners, without diagnosis and without suspicion.

It was not surprising to find out, when analyzing the results of my research, that no significant differences were found between women whose partners were formally diagnosed and women who suspected their partners to be on the autism spectrum without a formal diagnosis. Their physical and mental wellbeing was similar, much worse in all the aspects I examined and very different from that of women with a normative partner. This was not surprising because the awareness to high functioning autism started only in the late nineties, after Asperger’s syndrome was introduced into the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1994. So obviously, most of the adult population was not diagnosed during childhood because of lack of diagnostic criteria and knowledge.

At present, it is scientifically agreed that autism has a genetic component and that the large increase in the number of children diagnosed on the autism spectrum in the last decades can be mainly attributed to the relatively new awareness to high functioning autism. These days, many adults identify themselves as having features of autism following the formal diagnosis of one of their children, after reading an article about it or watching a T.V program. In many cases, it is the wife who recognizes features of autism in her husband…

In Israel, where I live and work, the awareness to high functioning autism in adults is so low, that not only is the adult population  not diagnosed, but autism is also not suspected at all in adults who got married and have children. Therefore, I chose to look for my research population abroad, in English-speaking countries. However, although the awareness in other western countries is higher, it is still far from being satisfactory and I would like to emphasize that the existence or lack of formal diagnosis does not really matter as far as high-functioning autism in adults is concerned.

If you gain knowledge about high-functioning autism and as a result, recognize features of autism in your partner and suspect him/her to be on the autism spectrum, you probably have good reasons to suspect it and you are probably right. So please trust your instincts and follow them!

Dr. Pnina Arad

Consulting and Coaching

 

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