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When Autism Runs in the Family

When Autism Runs in the Family

By Amalah

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.

 

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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Comments

  • S

    I absolutely love the positivity. But, unfortunately, it can really feel like a horrible, terrible, scary outcome to be avoided. I have a 2-year-old with ASD and the differences were obvious from day 1. She hated to be touched, didn’t know how to swallow, and never grew right even though the genetic testing was all clear. That’s not to say we knew it was ASD back then, just that she needed help. So very much logistical, financial nightmare help. Listen, I’m in the midst of a really, really bad day today. The goal today is just “keep them safe.” Learning, healthy eating, outside play … These are important, but not today. Not every day is this awful. But a lot of days are. I’ll say it. Most days right now are awful with the increasing behaviors, the IEP looming, the new diagnosis. It’s a fucking shitstorm. I have two kids and love them both. Duh. Knowing that we obviously have a genetic predisposition to ASD, I would never ever, ever no way oh god no continue another pregnancy with that possibility.

    • Christy

      Hey S….just wanted to say I’m sorry. It sounds like today especially is really rough. Thinking about you….hope you are ok and that there is someone awesome in your life to pour you a really giant glass of wine tonight. Hang in there….I’m sorry things are so tough. 

  • Anonyma

    Everything Amy said; be prepared, but give your kid time and space to reveal him/herself to you without expectations. My husband’s family is a teeming mass of diagnosed and undiagnosed disorders and mental illnesses. He and all his siblings are all on the spectrum, but none had any evaluation or treatment as kids. I was pretty sure our kids would have similar issues. Positive. When our son was born, I was obsessed with eye contact and googling all the warning signs and just generally steeling myself for delays of all kinds. You see where this is going? My now 23-month-old toddler is the most social person I know, his language development is going gangbusters, he revels in chaos and mess, and is a complete snuggle bug. He has not displayed a single warning sign for spectrum disorders. I think it’s wonderful for you to want to learn about ASD, but especially in that first year, there are lots of guaranteed challenges to prepare for, no matter what kind of kid you get, like sleep and feeding and learning to eat one handed. Try not to let the concern about a potential future diagnosis further complicate those already difficult early months.

    • vanessa

      Sorry, I can’t figure out how to reply not just to your comment but to the whole thing–check out the Thinking Person’s Guide to Autusm, OP, as an excellent resource. 

  • Maggie

    Minnesota Department of Health has The Follow Along Program a statewide, child find activity that supports young children who are at–risk for experiencing developmental delays. Maybe other states have a similar program.

  • Laura

    I’m pregnant with my first baby, so I don’t know if I will have an autistic child and I can’t offer much insight on what to do if you DO have an autistic child. What I do know is that I’m in the same boat as you: husband diagnosed with Asperger’s (he was diagnosed officially before he was ten) and a father and grandfather in law both diagnosed as adults. I personally am taking the hope for the best but prepare for the worst approach: I’m just going to assume that my baby will have the same difficulties as my husband, because part of me doesn’t want to be shocked by a diagnosis. LUCKILY your husband will have firsthand knowledge of what that is like and what will help. My husband attributes his success as a functioning adult to the fact that his parents had him diagnosed early but didn’t tell him until he was in his late teens- obviously this was before there were as many special programs designed to help children who have ASD so there was really no option to have him placed in any sort of special programs at school.

  • L

    Most states have programs that use the ASQ3 which is a questionnaire you fill out every few months that covers motor skills, verbal development, social skills, etc. from about 6 months to 3 years old.  Where I live, they email you the questionnaire, you fill it out, and then they email both your pediatrician and you with the results and send ideas for games to play with your kid that can help focus on areas they may be “behind” in.  The people I have worked with are great about emphasizing that there is  A LOT of variability in skill development, especially in the first year or so, and that scoring “low” in a certain area is not an immediate red flag, just an opportunity to to encourage your kid in another direction. If there are issues, it can be a good way to track improvements or help you know areas you should keep an eye on.

  • LB

    I know it’s kind of weird, but you might want to turn some of that researching energy towards reading about gut health in relation to ASD. I don’t know much or if it applies to hereditary ASD, but knowledge is power, right? And it’s something you can work on before you even conceive! This article is interesting: http://www.autismspeaks.org/science/science-news/spotlight-gut-bacteria-brain-connection-autism

  • S

    I thought of a few things you could do to prepare. 1. Recognize that either you or your husband might not be able to work in the early years and plan for it financially and emotionally, and begin discussing how you will each support the family. 2. Build a portfolio of clients that might allow you or him to work from home flexibly in the early years. 3. Look into insurance coverage. Kaiser covers ABA. 4. Expect tremendous financial implications from copays, special preschools, time off for appointments, etc. Your top picks or the cheapest options for childcare and education might not be options for your family.

    • vanessa

      Also, google Thinking Person’s Guide to Autism and their guide to avoiding autism cults, as well as their info about things like ABA, which has a LOT of very big problems. 

  • Mindy

    I have this “issue” and others in my family, too. Just love your child and enrich their life as you would any other child until you KNOW for a fact that you have a difference. Take him/her on playdates, to the park, and to museums.

    I always wonder how much better my brothers’ Aspergers would be if we hadn’t grown up in an abusive & chaotic home. I think they could well have flourished and be leading much more “normal” lives.

    My boyfriend and I are expecting our first, so we’ve discussed my family history, as well. We figure that any child given the amount of love and positive interactions we plan to use as semi-attachment parents will do well, even given whatever differences they have.

  • Annie

    After my son was diagnosed with Autism at the very large Children’s Hospital in my city, our family was invited to participate in a research study involving genetics. I’m not sure where the field is at this point, but by the time you’re interested in having kids you may be able to find out some more information about heritability, which genes you and your BF carry, and chances of having a child with ASD. And not to be crass, but in my experience if you do have children on the spectrum you will need lots of money. You may want to make financial / budget decisions that will set you up to pay out of pocket for therapies and schools your child may need. Maybe your insurance company will cover services, and maybe your school system will be great. Maybe not, and you’ll need to cover these expenses yourselves. And one more thing to keep on your radar. Parenting children with disabilitites does put an additional strain on marriages. You and your BF can help your future selves by building a strong relationship and getting into healthy communication habits now. My husband and I always thought of our marriage as being like a kid, that needed time and attention and on-going care. Now, we are reaping the benefits of that early, deliberate work on our marriage. Good luck to you guys with finishing your doctorates! All the best to you both with your exciting future plans.

  • Morgan

    A few resource suggestions from a speech-language pathologist for someone who might pursue parenting similarly to pursuing a PhD that would benefit children of all abilities:
    – Hanen Center (hanen.org): More Than Words and It Takes Two to Talk
    – LENA Research Foundation (lenafoundation.org)
    – Hart and Risley (1995): Meaningful Differences in the Everyday Experience of Young American Children
    http://www.strategiesforchildren.org/eea/6research_summaries/05_MeaningfulDifferences.pdf

  • Danielle

    One thing I would add as a fellow “accie” and an Autism parent is that this possibility *is* something to consider when you and your partner are on the academic job market. Some places have much more robust services for special needs children than others. It varies county-by-county or school district-by-school district within states, but different states also have widely different standards for who should receive EI, Pre-school Special Ed, etc. services, what kind, and how often. As you go on job visits, ask about the local schools and research the states you’re interviewing in. You can’t predict a particular outcome, but you can land yourself in a place where you’ll get support.

  • Erin

    My husband has high-functioning autism and we have one son.  Our son is in Kindergarten and does not have autism.  I have spent a lot of time and energy being vigilant of the potential signs, but all of the testing indicates that he is nuerotypical.  So it really is some sort of genetic toss up.  That said, autism has brought some amazingly healthy relationship behaviors into my house.  
    1) My husband models excellent self-care.  Our son sees him take his medication and go to therapy.  Sometimes he tells us he can’t participate in something because it would be overwhelming.  My son knows how to make space and accept my husband’s limitations, knowing that his amazing qualities are still amazing and that he is making the best choice for himself. As a result, our son also advocates for himself, showing a lot of forethought and maturity for his age. (He’ll tell friends that he doesn’t feel like playing because he is too tired, for example. He has learned that “no thank you” is an option.)
    2) We practice a lot of social-emotional education in our house. We talk about what our facial expressions mean, and have learned to communicate what we feel in words so that Daddy don’t have to wonder about body language.  As a result our kid is really verbal about what he is feeling (“I feel done with tickling now!) and notices when friends have shifts in moods or needs they can’t communicate.
    3) My kid has learned that different people are great at different things.  If he wants to play a specific game or write a story, he and my husband can spend hours together.  If he wants to go fishing, he asks me to call my Dad.  Not everyone can be everything to everyone else.  We outsource stuff that is out of our comfort zones, and my son is really happy to share different interests with different friends and family members.

    From what I’ve seen, preparing for potential autism is really difficult because everyone has such different strengths and challenges.  The only advice I would offer is to identify the pre-k educators in your community who could help if your child does start to present as they get into pre-k.  (Did I mention I recommend pre-k?) We have a director of early childhood education in our public school district who observes the pre-k programs and runs activities through the local library. She has watched my son from the time he was 3.  She knows our family history and would be the first one to tell me if my son needed supports or early-intervention.  Your pediatrician will also help find qualified professionals if you need them.  

  • Jennifer

    I must respectfully disagree. I had children on the spectrum. If I could do one thing different it would be prepare myself early, go to a parents group and maybe regularly baby sit a child on the spectrum to prepare. However keep in mind that all your preparing will be hard work and nothing good. Just know having a child is so amazing and you will adore them so much that when you do this for real it will be so much easier.
    About not diagnosing early. Hmmm I did notice my child was on the spectrum at 4 days old and I was right. I disagree about early diagnosis is bad. Wrong. It’s the key. Doctors ignored my pleas for almost 6 years and we lost valuable time in treatment. Treatment is key at helping this child live a good life. I know I am an adult on the spectrum and only after a recent Dx and treatment did my life change for the better. I’m 46. Don’t wait!! And trust me. If you brace for a child with Autism and wind up with a neurotypical child you won’t be all messed up. (You will feel the difference right away because it won’t be so challenging to raise them) You will be glad you prepared and that you didn’t have to utilize your training. We take CPR Classes and it doesn’t kill people around us with normal hearts. Be prepared!!!
    And here’s my biggest suggestion; Trust YOURSELF and your instincts. Don’t listen to anyone but maybe another parent with a child with autism. No one else really gets it. Doctors were wrong. Teachers were wrong. Friends. Relatives. Trust your instincts and your fellow parent warriors.
    Lastly chances are you are a little on the spectrum too. Woman manifest differently. They communicate n socialize better. But the fact that you love an Autie and get along so well means you might be from the same planet. Having said that: if both parents are on the spectrum then the odds the child will be are much higher. Prepare prepare prepare.
    Learn about the number one treatment ABA but learn how to do it correctly!!! Learn about Theory of mind, executive function, ADHA and strategies for All these.
    Ps I love and adore my Spectrumite children. They are the best!!! When you get comfortable with all I wrote above now go learn about “educating your school districts and mastering the IEP meetings”. lol Welcome to the Autism PhD program!! Your professors will live with you 24/7. Grin. Hugs
    Get some sleep now. I’m exhausted just saying this. Lol