When Autism Runs in the Family
Dear Amalah,
I love, love, love your blog and your smackdowns! I’m a long time reader and I really value your advice. I’ve some questions about preparing for a potentially autistic child.
I’m 26, my BF (of 7 years) is 27. We’re both students and finishing up our computer science doctoral studies. Once we’re done, we’re going to do the getting jobs, getting married and starting a family thing.
It’s the family thing that has me writing today.
My BF was diagnosed with Asperger’s Syndrome when he was in his early teens. Most people wouldn’t know it today – he’s “grown out of it”. By that I mean that his coping skills are excellent, he’s capable of avoiding situations that would overwhelm him and he presents externally as a professional, polite, quiet, funny young man. I’m very much in love. Awwww. I see some of the other side at home, with bits of anxiety, social stress, and texture & food issues. But he’s awesome and more than coping with any challenges he faces day to day.
BF’s dad (60 years old) has never been assessed, but I’d place a huge wager on him gaining a diagnosis. He’s far more Aspergers-y than BF. The same with BF’s granddad. There appears to be a lineage going on here.
So, I’m in the position of almost expecting some/all our kids to have difficulties. I’m okay with that ethically – my BF is great and happy and I’d love to have kids that are like him.
My question is one of preparation. What should I be doing to get ready for these aspects of my kids and to give them the best start I can? How early are the earliest interventions?
What should I read now? Are there any books on babies (rather than toddlers) with autism?
And what should I do with a babe in arms? Extended eye contact from day one? A big focus on sensory play?
I’m not actually panicking at the moment. I know we’ll muddle though, have wonderful successes and make dire mistakes regardless. I know I’m over analyzing the situation, and it may not happen. I like to prepare, and for me, this is like reading up about cloth diapers (love your stuff on cloth by the way!) or baby sleep. Just being prepared, you know?
Thanks so much!
PreBump Prepareer
Okay, so on the one hand, I want to thank you for NOT thinking that having a child with Autism is some horrible, terrible, scary outcome that must be avoided at all costs. (Including, like, our herd immunity. Arrrrrghdon’tgetmestartedontheantivaxxers.) Thank you for seeing that it’s not a death sentence, it’s just a difference.
On the other hand, I would really want to caution you about pre-diagnosing your babies before they even exist. Or pre-diagnosing your children before they are old enough to be really properly assessed. Autism can run in families and Autism can NOT run in families, and both families can end up with children on and off the Spectrum. But a diagnosis takes time and patience and you MUST allow a wide berth for your children’s natural pace of development and their individual quirks/personalities. An Autism diagnosis can open a lot of opportunities for support and intervention, but at the same time it’s not necessarily something you want to slap on a newborn right from the get-go because his or her eyes aren’t focusing on your face yet.
Not long after my oldest was diagnosed (initially with just Sensory Processing Disorder), I had my second baby. And of course I’d completely forgotten how long it takes babies to do…well, ANYTHING, and got myself convinced that since my first baby did X and Y and Z and turned out to be “different,” any time my second baby did X or Y or Z, it meant we were CLEARLY headed down the exact same quirky, sensory, developmentally delayed path.
We were not, at all. Other than really, really hating the dentist and an impressive ability to ignore me asking him to put on his shoes, Ezra has absolutely no sensory or social issues.
And then I had a third baby and did the same damn thing all over again. To the point of Googling whether or not you could “tell” if a newborn has Autism.
Spoiler alert: No, you cannot. In fact, if I did learn anything from my sleep-deprived, neurotic web surfing, is that a diagnosis of an Autism Spectrum Disorder (ASD) made when the child is TOO YOUNG should be treated with measured caution, and the child should be reassessed when they are older to account for normal lags and jags in early childhood development.
In retrospect, sure. There were “things” my oldest son as a baby did that maaaayyyybeee were a sign that he’d eventually land on the Spectrum? Things his brothers didn’t really do? But then each of them also had their own unique set of baby quirks too. All of my toddlers lined up their toys. My youngest toe-walked a little bit, as did my oldest. So who could possibly have known that he alone had Autism? We certainly didn’t, and I don’t regret that or feel like we missed some crucial intervention or opportunity because we waited until he was two years old and had a documented speech delay, would freak out if his trains weren’t lined up perfectly, and had a pronounced toe-walking habit. I’m actually glad I never thought to stress out over his fascination with ceiling fans as an infant, because WTF would we have even done at that point? The baby likes ceiling fans, let him stare at ceiling fans.
But just as ASD/Asperger’s is a part of who my son simply IS, I’m going to guess that being a VERY VERY WELL-PREPARED PLANNING TO PLAN person is simply who YOU are, and nothing I say here is going to remove the urge to read/research All of The Things. So…maybe just reframe this. Instead of trying to find resources on “babies with Autism,” I suggest you read and research more about Asperger’s/ASD in general, across any age. It will help you understand what your husband experiences, and maybe shed light on how he achieved such a great outcome. (Despite not being officially diagnosed until his teens!)
I’m a big fan of the guys from Asperger Experts — they both have Asperger’s, and are able to very clearly explain and articulate what day-to-day life is like for them, and how I as a parent can make day-to-day life better and easier for my child. They also have videos and coaching materials aimed at older teens and adults, which I imagine my son will find useful at some point.
And if and when you do have a baby, please…just enjoy him or her. Love him or her. Let him or her simply be PERFECT for as long as you can. Try not to constantly scan his or her face for “signs” or view your job as a parent to include being an occupational therapist and psychiatrist and developmental pediatrician all rolled into one. Even if you do have a child on the Autism Spectrum (and hey, technically we’re ALL on the Spectrum), you’ll clearly be a capable, educated person who knows what Early Intervention IS and can probably track down the phone number on your county’s website. They’ll be there if and when you need them.
And BONUS: Don’t forget you’ll be co-parenting with a living success story and a bona fide expert in life on the Spectrum.
More on Asperger’s Syndrome From Alpha Mom:
- To Label or Not To Label, That is the Question
- Dealing With a New DiagnosisÂ
- In Hindsight: Child Development and When Should We Worry?
