Autism and the Decision to Have a Second Child

Back in April I did a blog post for World Autism Awareness Day (it’s reeeeeally long FYI so if you’re going to read it go get some caffeine or something) and toward the end I wrote this,

“in our case had we known earlier that Aaron had autism we never would have planned another baby and we wouldn't have Rachel. So sometimes ignorance and denial are good things!”

When I wrote those words, Rachel’s autism was not even a blip on my radar. I was in even bigger denial with her than I was with Aaron. Even as we learned more and more about autism with Aaron I still never took a second glance at Rachel because she was totally different from him. She still is.

Today I was on a Facebook group I belong to and a mother of a newly diagnosed child posted several questions to our group. She seemed to be rather upset and lost which is normal. One of the questions was about genetics and autism but the other was whether she should have a second child because the first one has autism. She wanted our opinions.

I immediately thought of those words I wrote above because I never really clarified what I meant by them. They always meant one thing to me because when I wrote them Rachel didn't have autism as far as I knew.

I wrote in my reply in the Facebook thread that I would hope she wouldn't consider autism in her decision (she should I suppose if her child has other medical issues that require so much care that it is beyond her abilities to care for more than one but I don't know the whole situation) because I was someone in the past who would have, and it would have been a terrible mistake. Had I known about Aaron’s autism before we got pregnant with Rachel, she most likely wouldn't be here. Rachel was a planned pregnancy.

Here's where I wanted to clarify what I meant when I wrote what I did originally.

I wouldn't have decided to have only one child for the reason most people think. It is because of autism, but not about the potential of a second child having autism. I really never even thought of that after the fact until the whole genetics thing came up recently. The reason simply was because of my age, my husband's age and our long-term stamina for crying out loud.

My husband and I are no spring chickens. We aren't old by any means, but I was 32 when we got married and he was 41 (cradle robber.) We had major fertility issues and 4 years of miscarriages before Aaron was born on New Years Day in 2010. That put me in to my late 30’s. I was happy that we finally just had one baby - a baby I never thought we would have. If I knew he had autism I probably (I can’t say with 100% certainty of course) would have stopped at one so I could dedicate all of my time and energy to him and his needs without us completely falling apart as we aged.

I don't even want to think about it.

To say above that “denial is a good thing” is such an understatement there are no words. It literally brings me to tears to think that my precious little Rachel was so close to not being here because of a stupid diagnosis and my worries about our ages when we have 2 adult daughters that have very enthusiastically stated they will care for their younger siblings in our absence or lack of ability should the need arise. We didn't even have to ask. They even made the plans already. There was no need to worry about anything like that and you know what? I still worry about it. It's natural to worry and nothing could stop me but I worry much much less because there are no other people on earth I would want Aaron and Rachel to be with if me or my husband were gone or not able bodied anymore. I worry about shit every day for these kids. Especially things that require a voice to get them help. There are so many variables that I can't control...I'm rambling....anyway back to my point, thank God for denial.

They are both non-verbal, they both have autism. Rachel throws EVERYTHING. She is defiant to an extreme degree, she won’t eat, we spend 60% of the day trying to feed her, she has no respect for danger she actually seeks it out, she tries to leave the house whenever Daddy leaves and we live 20 yards from a river (we have deadbolts on all the doors, keys up high/hidden, etc.) she is by far the more high maintenance of this semi-silent autism duo. But…. she is the most amazing, stunning little girl. I always thought she was. If I didn’t think she could get any more incredible, since I stopped giving her vitamins, she smiles, she laughs, she finds humor in things, she gives hugs and kisses (on her terms but still….) she doesn't scream in people’s faces anymore (except Lori…ha) people can come to my house without her melting down every single time, she stacked blocks for the first time!! She never made a block tower bigger than 3 blocks high before now. The one she made the other day was almost as tall as her! She works on the iPad now and studies what she needs to do instead of just obsessively pushing the home button and then throwing it across the room. She doesn't whine all of her waking hours like she used to (no joke.) She is the most fun, sweet, silly little girl to be around and I adore being in her presence. I do enjoy my breaks, but I miss her terribly when I’m not around her and I can’t imagine what life would be like without her.

Is it hard to have 2 non-verbal autistic children? Hell yes it’s hard.

Do I cry a lot? Off and on.

Am I on anti-depressants? As of about 6 months ago thanks to a very enlightening blog post by Autism Daddy, yes I am and I feel much better! And contrary to the beliefs of this person who is forever blocked, I'm not on them because I hate my children, I'm on them because I hurt FOR my children and I worry about my children and their futures and it really does take a toll on your body and your mind.

Would I trade my children for “typical” children? Of course not.

I have never heard of an already loving parent who regretted having their second, third child etc. regardless of their challenges. Can you imagine a person that could look in to the eyes of their own child and think to themselves "I wish I hadn't had you."? If there really is such a person perhaps they weren't meant to be a parent in the first place and the adoption option would be a good way to go.

I’m not saying everyone should run out and have a second child, but I would hope that autism, either the chance of a second diagnosis or the splitting of demands between the first and second child, wouldn't scare someone away from their dream.

At least they are a dream for me and I’m forever grateful that I didn't miss out on it.

I do admire this woman for knowing she shouldn't just jump to one conclusion about whether it was a guarantee that a second child would have autism and just make the decision alone. I'm glad she was brave enough to come to a group of her new peers and ask for their advice. It's hard to not be pulled in a thousand different directions by a thousand different pieces of information after an autism diagnosis. The information system is so chaotic and disorganized that most of it, if not all comes from books or the internet and you have to pick and choose which little tiny bits apply to your child. That sometimes takes years to figure out. I only recently figured out some stuff with Aaron that had me totally confused.

They really do just give you a diagnosis and kick you out the door. No aftercare, no classes to teach about sensory issues, no nothing. Therapy helps the child with their developmental delays but the autism? That's all you. Learn by experience. Trial and error. Children basically treated like guinea pigs. I guess it's no surprise some women are scared to have another child after all. I fortunately have most all of Aaron's sensory issues myself so I sort of "got it" with what he was going through to a degree, but we are still learning every day and his sensory issues change all the time. It shouldn't be so hard to make your child comfortable in their body and their world.

I hope this woman stays in contact with us and uses her resources because other autism parents are the best source of support and information around this community. I really hope she isn't scared away from another baby because of autism. I wouldn't want her to miss out on her "Rachel." :)