Autism Genes and Parental Guilt

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.

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7 thoughts on “Autism Genes and Parental Guilt

  1. First, I very much agree with your conclusion. Second, I think you’re a super dad. And, third, interestingly this is the first time my BB has allowed me access to your blog. Usually the Ciy’s system blocks all blogs. Love you, even if you are 50 and belong to a fortylicious web site. You’re perfect just the way you are!

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    • Sally, you are lovely. Thank you for your kind words. I love my kids and I do whatever I can to help them grow. I have no explanation for why you can suddenly get blogs at work. Maybe your employer doesn’t know that you have this ability.

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  2. Do you think you would feel guilt if there was a test that showed it was genes from your DNA and only your DNA that had “caused” the autism? I’m not sure that its easy to feel infinitely responsible for something that was handed to you in turn.

    My son has Asperger’s, and I did stop and think hard about the genetics – especially when my daughter was later assessed has “nearly having Asperger’s” (i.e. she scored high on two our those three dreaded “impairments”). My father is on the spectrum so it was easy to put 2 and 2 together and make 5! But I like to think that having so much experience in the family has also made it easier for us to teach them ways of coping with the difficulties.

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    • Thank you for commenting and sharing your family history.

      Your question has been on my mind for quite a while. This whole post has actually been percolating for several months when the twins’s mom started talking about our daughter being assessed.

      I recently saw the documentary called “Do You Really Want to Know” which is about genetic testing for Huntington disease. In the case of the families in that film, testing is something that could give them some insight into how their health will unfold or how their children might be affected.

      If there were a single-gene mutation for autism, I don’t know that a test would make much difference after my children were born. One way or the other, there would be occasional feelings of guilt and those feelings would need to be explored.

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  3. There is no reason for guilt. There are so many good things that you have given your children. Being on the spectrum myself, I wouldn’t be any other way. I am proud to be who I am and I am proud to have had my two kids; one is on the spectrum and one is not. They both have their unique attributes. No one is perfect nor is anyone meant to be. Humanity is a rainbow of various shades, hues and colors, all beautiful!
    I agree with Sally: You are perfect the way you are!

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    • Thank you so much for your comments.

      I believe that we often find ourselves what we could have done differently in many situations. Sometimes that gets expressed as guilt and has to be addressed and then it is time to move on to learning the lessons.

      At the end of the day, there are some wonderful children in the world and I am blessed to be their father. I would not have done anything differently in taking the paths to become their father.

      What I want most for my children is that they find ways to live independently. My son may have a longer way to get there today, but it will not always be that way. And like all of our kids, they will determine what independence means to them. I am here to lay a foundation for them. Being given that role in life is quite a remarkable thing.

      I hear you and Sally very clearly. We do the best we can and make the best choices we can. One of my choices is that guilt is not going cloud my thoughts for any longer than I need to process it.

      Thank you again for your lovely thoughts.

      Like you, everyone on this planet has reasons to be proud.

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