Having a second kid after one with ASD?

Kiddo’s genetic test results are back.  A DNA microarray showed no copy number variation (CNV) abnormalities, meaning she does not have additions or deletions of large chunks of DNA in her genes.  The test for Fragile-X also came back negative.  However, there are other types of mutations, for example point mutations of a single nucleotide, that would be missed by these tests.  After all, the heritability of Autism Spectrum Disorder is known to be over 70%, whereas these genetic tests only show abnormalities in less than 20% of people with ASD.

These tests, along with the fact that kiddo is over 2 years old now, have me thinking about adding another child to our family.  We currently only have the one.  We always planned on at least two children, and with the ASD diagnosis, I think it’s particularly important that kiddo have a sibling for socialization reasons.  But, my concerns relating to having another child are twofold: (1) Will he/she have ASD? and (2) Where will we find the time?!

Regarding (1), it’s not that I particularly mind having another child with ASD.  I love our first kiddo to pieces, partly because she is different and has her own way of doing things.  But kids with ASD require extra support, and in particular extra time (so see discussion of (2) below).  Also, our first kiddo’s ASD is “high-functioning” and in fact it seems she may be really smart!  What if our second kid has low functioning ASD?  In that case the new sibling may not help in socializing the first kiddo, and may require even more support than she does.  Since the genetic tests kiddo #1 had turned up nothing, we have no information on what the odds of having another ASD kid are (except for the general statistic that says the sibling concordance rate for ASD is 20%).

Regarding (2), our lives are already packed full with very little free time (see my previous post about therapy at home).  And my professional life is only going to get more busy as I approach tenure.  It’s hard to imagine how a new baby would fit into the picture.  I find myself questioning whether a second kid is really a selfish thing to do, since the competing interests of both kids may mean both have some needs neglected.

Our vague plan is to wait another 2-3 years.  At that time kiddo #1 will be 4-5 years old and entering kindergarten.  Hopefully she will need less therapeutic supports by then, allowing us to focus more attention on a new baby.  The downsides of waiting are of course a larger age gap means they will socialize together less, and kiddo #1 may feel more jealous of the baby after being an only child for so long.

I would love some comments from other people about sibling dynamics in their families with ASD.  What worked?  What didn’t?  Were the parents spread too thin?

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Autism therapy at home

My autistic daughter recently started her ABA (Applied Behavior Analysis) therapy.  Her therapy schedule is 1.5 hours/day at preschool and 1/5 hours/day at home, 5 days/week, for 15 hours of ABA.  She also has 1 hour of speech therapy at home, so a total of 16 hours, 8.5 of which occur at home in the evenings.  A typical evening looks like this:

4:45 Husband gets kiddo from preschool

5:00 kiddo gets home, we feed her

5:30 ABA implementer arrives.  ABA from 5:30-7:00.  Husband and I usually use this time to prepare and eat our own dinners, then participate in the therapy afterwards.

7:00-8:00 play with kiddo, possibly a bath in here.

8:00-8:30 getting ready for bed, bedtime for kiddo.

8:30 Husband and I collapse on the sofa.

It’s busy, to say the least, and leaves basically no time to keep our home clean. During the week we just try to keep the mess semi-contained, and then fix it over the weekend (this doesn’t always happen).  The weirdest part though is having the implementers and therapists constantly in our home while we are preparing and eating dinner.  We have the same implementer who comes every evening, and she’s great.  But she’s also an undergraduate at the same university where I am a professor, so that’s a bit awkward.  I did not imagine when I started as a professor that within a few months, I would have an undergraduate I didn’t know intimately involved in my family life.  I have never liked having new people in my home, and the whole thing makes my home feel less personal and more public.  Our implementer has always been completely professional and sweet with our daughter,  and the therapy is obviously working.  We are seeing tremendous progress.  So I have no doubt that this is the best thing for the kiddo, but it’s taking some getting used to for me.  Since our daughter just turned two, this will likely be our schedule for at least the next year until she turns three and becomes eligible for the local special education school for children on the autism spectrum, which will also provide her therapy.