With 2 children on the spectrum, I have wondered often about whether or not there is something in my genes that I have passed on to my kids.My oldest daughter and my son have different mothers. It would be easy to think it must be something inherited from me. This past week, my youngest daughter finished her assessment by one of the top ASD specialists in the country and he concluded that she is not on the spectrum. His view was that she wasn’t even close.
Why she was being assessed has more to do with the dynamics of the parents and less to do with the spectrum. Her twin brother and older sister are on the spectrum and she is having difficulties with reading and writing.
So, two out of three children are on the spectrum and one is not.
There is still the nagging thought about whether or not there is something in my genes that has led to 66.7% of my children to be diagnosed with an asd.
When I started paying attention to my son and noticing that maybe his lack of eye contact and other issues, I thought autism pretty quickly. I reflexively did the math about vaccination schedules even though I knew better.
Over the years, I have read some of the same studies many parents do. Thankfully, if I am not sure I understand what I am reading there are excellent resources like The Thinking Person’s Guide to Autism and Left Brain Right Brain that can help me when I am clueless.
I am not an engineer or surveyor, but I do play with data in my line of work. I was over forty when the twins were conceived but 30 when my oldest daughter was.
Where does that leave me and my genes?
Over the years, I have discovered that many, many people use the word “genetics” when they mean heritability. There are a lot of studies out there and at this point, aside from Fragile X or Phelan-McDermid there is little that points to a single gene mutation which occurs with Huntingon disease, cystic fibrosis or hemophilia to name a few.
Despite the problems with twin studies and inherited traits over the years, those studies can be usded to make an interesting point here. Even in the case of an identical twin being diagnosed with autism, studies do not show that 100% of the other identical twin is on the spectrum.
Recent research on di novo mutations in an autistic child could suggest that there are a number of mutations at work, or environmental issues connected to multiple mutations. This could explain the differences in identical twin research.
Finding a single autism gene or mutation or copy number varient, or discovering a variety of genetic clues may lead to earlier diagnosis, which could lead to earlier intervention. Those are good outcomes.
If it were determined that a parent did pass on a gene, what does that do to the parent? Many parents question vaccinations or where they live or the age of conception and feel they could have done something differently resulting in some feeling enormous guilt. How would parents feel if research uncovers something basic in our DNA that our children inherited?
I have no answers. Even before the issue of heritability was being raised with regard to my children, I wondered and I felt a measure of guilt.
At the end of the day, though, what my children need is not a father who feels guilty, but one who is able to support, teach, listen and love. There are things that my children will achieve and my role is to be a part of their foundation and to get them ready to realize their potential. For my newly diagnosed neurotypical daughter who dreams of being a figure skating paleontologist that means sometimes playing Barbies, dancing to Just Dance 4 on the XBox and remembering how to play chess.