Small World After All
Three and possibly four autistic children with different mothers have all been liked to the same sperm donor, “Donor X.” CNN.com interviewed one of the mothers, Gwenyth Jackaway, whose 5 1/2 year old son Dylan is autistic. Jackaway is single and had always wanted to have a child, so she contacted contacted California Cryobank, which is one of the largest sperm donor banks in the country. Dylan was diagnosed at the age of 2.
Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.
Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola’s son, Joseph, 2, exhibiting some of the same behavior as her son.
“He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues,” recalled Jackaway, who immediately suggested screening Joseph for autism.
“She told me that she saw characteristics of autism, and it was very upsetting to me at that time,” Pergola said. “I didn’t know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK.”
Pergola says she was afraid because she had an image of autism in her head and believed her son would be “in the corner and rocking and not talking.”
She says Jackaway reassured her that wouldn’t be the case.
One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.
Further proof that there is something genetic about autism?
In any event, I see Jackaway’s and Pergola’s experiences as a sign of the small worldness of autism: My husband Jim has met Jackaway (Jim, like Jackaway, is a professor at Fordham University in New York). We’re more connected than we realize.
Small world in need of revision
Tags: asd, asperger, autism, biology, Diagnosis, dna, fordham, Genetics, pdd-nos, Science
10 opinions for Small World After All
H6
Apr 4, 2008 at 6:29 pm
It would be interesting to know if the sperm donor was screened for HHV-6, one of the the viruses linked to autism. I didn’t see it on the list of viruses screened for at one of the large New York sperm banks. That’s part of the tragedy of HHV-6: it’s not yet considered a serious pathogen by public health officials. Tragically, HHV-6 is in the blood supply and possibly in the sperm banks.
If the donor and the children all have active HHV-6 infections, it could point to a viral aetiology or complicate the genetic argument.
Joseph
Apr 4, 2008 at 8:22 pm
I bet you that the moms in this case don’t have much of a problem with the idea that autism is genetic, unlike many other autism parents. Any guesses as to why that is?
RAJ
Apr 4, 2008 at 10:10 pm
“Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola’s son, Joseph, 2, exhibiting some of the same behavior as her son.
“He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues,” recalled Jackaway, who immediately suggested screening Joseph for autism”.
There are two problems with assuming genetically transmitted ‘autism’ in this case.
First, Ms gave birth to triplets, but only one was ‘autistic’.
Second, walking on toes, hand flapping and having ‘eye’ contact issues are not autism specific, they are commonly reported in mental retardation and other neurological impirments.
To repeat, why only one of the triplets?
Joseph
Apr 5, 2008 at 10:33 am
“To repeat, why only one of the triplets?”
Were they identical triplets? Let’s not forget that one of the parents was not autistic.
Kristina Chew, PhD
Apr 5, 2008 at 10:37 am
@Joseph,
“I bet you that the moms in this case don’t have much of a problem with the idea that autism is genetic, unlike many other autism parents. Any guesses as to why that is?”
Not too hard to guess.
Sarah
Apr 5, 2008 at 3:21 pm
Interesting story, but I find it a bit ridiculous that the guy’s sperm have been removed from the “general catalog” entirely. I’m sure some people might actually want a child like the delightful and intelligent boy described in the article. Surely it would be less discriminatory to simply add a note which says 3 out of 6 kids conceived with this donor have this diagnosis, followed by a description of their abilities and disabilities.
Patience
Apr 6, 2008 at 12:45 am
I agree, Sarah. My girlfriend and I would consider such a donor if he met our other wants (successful pregnancies is the biggest–I would prefer to use a donor who is proven, as it were–but if we’re going to use anonymous sperm, we have a few superficial things we’d like, too, like height and hair colour).
Theresa Pergola
Apr 7, 2008 at 3:18 pm
Hello all - I am the mothr of the triplets in the story. I would like to comment on a few of the posts. First, the children are not identical - I have two boys and a girl. Second, I believe the bank pulled his sperm way before we notified them about the children. He was listed as “no longer available” very soon after I gave birth. There are now 14 children born from this donor (we found two more after CNN, one is on the spectrum). Lastly, I do not blame this on genetics - I am well aware that it could be a variety of other factors such as frozen sperm, etc. However, I do think we’d be a good group to study since there are now 5 out of 14 with a diagnosis.
Kristina Chew, PhD
Apr 7, 2008 at 5:49 pm
@Theresa Pergola, thank you so much for writing here about your children and for noting that there are more children who were born from sperm from the same donor. It definitely seems that it would be important to study this group. Thank you—-
Kate
May 17, 2008 at 4:57 pm
And was Donor X himself informed? Studying his family’s history could be very interesting.
Have an opinion? Leave a comment: