That’s the article link that got posted in a special needs parent support group I belong to that was opened for discussion. I feel the need to share my thoughts here.
First I just want to say how much I appreciate this group’s open mind and willingness to even have an intelligent discussion. There were no arguments, name calling, or anything like that at all. There was even an appreciation that there wasn’t even an announcement that Autism can be tested for in the womb. If you don’t understand what I’m talking about, look up Down Syndrome. It is a chromosomal disorder that can be tested for in the womb. With the medical advancements we have today those with Down Syndrome can make it to adulthood and live happy lives. I hope I don’t need to spell out the old fashioned rhetoric that some still preach and I fear that might get preached if we were to develop a pre-natal screening for Autism.
So what exactly does this current research mean? Well from what I understand it means it’s looking like it follows a similar model as Diabetes Type 2: everyone has the risk of developing it, but some people are genetically set up to have a greater risk for it than others. The bad news is we can’t cure diabetes either, but at least both can be managed with right support.
Could we ever develop a genetic test for Autism? Yes… an no, thanks to genetic overlapping. This is where the talk of phenotyping comes in. It’s where you have a specific set of genes than come into play that creates a specific expression. Remember how I discussed before about the “Fear of Harm” phenotype in children that has proven to consistently lead to Bipolar later in adolescence? There are a specific set of genes that cause the brain to develop that way, yes. However just has the article I opened this post came out, breakthrough research has also come out at the same time, finding 19 genes that cross over between Autism, Bipolar, and Schizophrenia.
You can read two of the articles I’m referring to here:
What this means is at best, depending on the gene they decided to test for, they could narrow it down to identify someone who is at risk for one of two from these three disorders. I don’t think they are willing to create a test like that and here is why: the Autism community has been very adamantly clear that Autism isn’t a mental illness while Bipolar and Schizophrenia are universally held as mental illnesses. What will happen if we start testing for this?
I agree and support the Autism community’s stance. Autism, although sharing some symptoms, isn’t the same as Bipolar and Schizophrenia. A mood stable person with Autism that doesn’t have psychotic features doesn’t need medication for treatment. Hence by their definition, and mine, there is no illness present. Mood instability and psychotic features are not even part of the diagnostic criteria for Autism. Therefore if they do have those symptoms, it becomes a co-morbidity and needs to be treated as a separate issue as part of a whole.
People who are not sick do not deserve to be called sick. Nor do we need to be causing mass panic with the “what ifs” over ONE gene with an unborn baby. Eugenics will be the ultimate result. IF such a test were to be developed it should be developed as a panel – one that tested for all 19 genes for example – and be reserved as a diagnostic confirmation. Meaning it should be used as the final step in the diagnostic process.
Or it could be used as genetic counseling when a couple is planning whether or not to have a baby. Take younger a version of me for example. I’m Bipolar and want to know what are my risks of passing my disorder on to my children. We could run this genetic test panel to see how many of them I carry. Granted it’s not 100%. Obviously being Bipolar I carry SOME genes. But do I carry a significantly greater or lesser risk? Does my partner? Combined how much does the risk change? Looking at the panel could we estimate the risk for each disorder or not? Would any of this alter my decision about having children?
Honestly I had my children before I was diagnosed Bipolar, so I don’t know how I a younger version of me would answer that last question if she knew she was Bipolar. The ethical implications of genetic testing like this is profound.
All three of these disorders are listed in the DSM, a diagnostics manual originally intended to identify and treat mental illnesses. As we come to a better understanding of how the brain functions, malfunctions, and the genetics behind all of it, there is a growing shift away from calling them mental illnesses and mental disorders. There is a growing push to call them brain disorders due to the fact that many of these are caused by alterations in the neurological function of the brain brought about by genetics. My question to this is what impact will changing it to “brain disorder” have on the stigma we face? What impact will it have on the treatments, care plans, and supports we receive?
I have been following the genetic research for Autism since my son was diagnosed with it at 18 months old. He is 12 years old now. I followed it because my gut said so, because my family medical history pointed to it, and because it made the most sense to me. Over the years research as hinted, suggested, and all but said it’s genetic. It’s almost as if they are afraid to just come out and say it. Even now. This is the closest the experts have come to making a public statement saying “This is it. We have found it. This is what causes Autism.” It would be too optimistic of me to hope that it would end the years long debate, but one can certainly hope.