The first article in a 3-part series on motherhood is out today at Autism Women’s Network: Motherhood: Autistic Parenting
I kicked off the series with the social aspects of motherhood because that was one of the biggest challenges for me and for many of the women who answered the survey questions. In the article, I focused a lot on the areas of difficulty that we experience and touched on some general ideas for supports.
There is clearly a big gap when it comes to resources for autistic moms. I’m wondering if any of you have found solutions to the need for social supports. Do you know of online support groups for mothers on the spectrum? Have you found ways to communicate effectively with your children’s school or have you gotten any social supports from local social services organizations? Have you enlisted help from your own parents or family members when it comes to the social aspects of being a mom? If you’ve done things that have worked, I would love to hear about them and I think lots of people would benefit from having a pool of realistic options to draw upon.
As always, I owe a huge thank you to everyone who answered the survey questions. There were more than 70 responses, many of them incredibly detailed. I’m humbled by how honestly and openly you all share your stories. Although I couldn’t include quotes from everyone, I did my best to find the common threads of our social struggles and portray those in the article through representative quotes. There are still two more articles coming, so if you’d like to contribute, please feel free to fill out the survey in the coming days.
Musings of an Aspie 
Just read this over at Autism Women’s Network. I’d heard of your blog before but never gave myself permission to read it in sympathy. I’m used to not belonging so I thought I had no right to belong to ASD either. But… I got brave in my early 40s too, and my own diagnosis is pending in a few weeks. I began the process of diagnosis the year after my first child was born. The sensory demands of parenting (and lactation!) nearly did me in. I abandoned the diagnostic process to have another child (turned out to be twins, both on the spectrum), then moved, and started the diagnostic process again about a year ago. Here’s what I wrote at AWN: Although I am not a supporter of the autism-as-disease model, I bristle when moms of kids on the spectrum get attacked by anti-Autism-Speaks activists because they AUTOMATICALLY assume that all moms are neurotypical and are treating their children as alien freaks. Given the genetic linkages behind autism, it’s probably safer to assume that a mom of kids on the spectrum is on the spectrum herself, and is trying to manage the social and sensory challenges of parenting. Many moms are scared to death that their kids will have to endure what they endured, or worse. Wanting things to be better for your kids than they were for you is natural. Both of my brothers are also on the spectrum, and I am by far the most “functional” in the sense that I grew up self-sufficient while they did not. So I look at my kids and wonder, “Will they be like me? Will they be like them?” This, in addition to the sensory craziness of insufficient sleep, work-life balance, the NOISE, the SMELLS, OMG… I could go on all day. I am 1000% pro-neurodiversity, but when you’ve grown up with it in yourself and your loved ones, there is much to fear as well. Quite the odyssey, parenting kids on the spectrum. THANK YOU, anyway, for posting this. I’m dying for more blog posts, literature, whatever, about being on the spectrum yourself while parenting kids on the spectrum. I will keep coming to your blog.
I think it’s fair to assume that most kids on the spectrum will have at least one parent who is also on the spectrum. As that becomes increasingly realized, we’ll see more and more parents getting diagnosed. It’s great that you’re finally reaching the goal of a diagnosis. it sounds like you’ve waited a long time for it!
I know I responded to your comment on Facebook as well, but just wanted to give you a virtual hug here too. I’ve seen that tendency to assume that parents are always neurotypical and don’t have a clue what their child is going through. I think it might just be a reaction to the negativity that some people feel when it comes to parents/autistics discussions, like there’s two groups and never the twain shall meet. But the twain do meet, like in your case and Cynthia’s and a heap of other people in the blogging community.
(I’ve also noticed that people who tend to get their harsh on are usually a lot younger than the parenting crowd. That might be a factor as well, maybe some residual feelings of how they were mistreated by adults, and that being a very recent experience for them. I identify with parents because they are overwhelmingly in my age group, even though I’m not a parent myself. But maybe I’m overgeneralising).
Oops, that comment was intended for Kris.
Great article. I really enjoyed reading what other mothers had to say. How do you teach NT children social skills when you yourself are on the spectrum? How do you know what you do not know? These questions have been banging around in my head. My oldest only just turned 3 and I wonder how he will understand what I do not as he moves into the world of socialization. I very much want to homeschool our children because of my own experiences with the public education system. I would love the support of other moms on the spectrum who have gone before me. Just because I’m autistic doesn’t mean I’m not capable of educating my child. I just need to know where I will need help.
My daughter isn’t autistic, but we’ve realized in the past few years that she has some learned autistic social tendencies, thanks to me. It only became obvious when she got out into the adult world and made friends with people who were willing to let her know that she had some unusual ways of interacting. On the other hand, she’s generally very good at things like small talk, making new friends, connecting with people, etc. Her current job has a huge social component to it.
I think she learned a lot of social skills from her dad (also not autistic) but she also had to learn to “fend for herself” to a large degree growing up and that sort of trial by fire is a pretty effective teacher. Some social skills (like reading body language) apparently come hardwired in NTs. 🙂
Sounds like this will be a useful series for autistic moms, who so often get missed in parenting pieces (focused on child interventions, not supports for autistic parent). Good to know about this resource.
There is so little out there for autistic parents and when you think about it, providing supports to autistic parents is a really effective way to support their children, autistic or not. There’s a huge trickle down effect to helping people be good parents.
I don’t have any children but I’ve always wondered how I would be able to take care of my children at the social aspects when I wasn’t too good at it myself and I’m pretty sure I’m still behind socially compared to my peers. Looking forward to your thoughts in the series!
I’m way behind socially compared to my peers, but I guess I muddled through okay with a patchwork of supports. I relied a lot on my husband, who isn’t autistic, to fill in some of the gaps. In other areas, I think my daughter picked up a lot of social skills from peers, teachers, etc.
Thanks so much for this. It’s great to have another resource we can draw from-there are so few.
My biggest source of support has been my family, for sure. They have always been so accepting and they’re always there to answer random questions on everything from how to plan a birthday party to what to wear to a wedding. And they always remind me of my strengths when all I can see are weaknesses. Unfortunately, they don’t live close by, so another big source of support has been the church we go to. We’ve met some pretty nice people there and there is a small group of young kids there for my son and daughter to play with. There are a lot of resources in our area for parents with young kids, too.
As far as online resources go, there is a Facebook group for parents on the spectrum called Parenting with Asperger’s Syndrome. Wrongplanet.net has a forum for parents-mostly parents of autistic kids but I think there are some autistic parents there as well. The Mothering.com forums aren’t specifically for autistic moms but I know there are some in the community and it’s a good place to ask questions and get support and even just have interesting discussions about parenting.
Otherwise we’re just flying by the seat of our pants (my husband has AS too) and trying to figure things out as we go along. I have a lot of social anxiety when I’m around other parents because it can be so competitive and we just seem to be on different planets. My toddler plays with other kids at church and at gymnastics once a week, but I’ve never arranged a playdate, which is something I feel a lot of guilt and dread over. I think he may be NT so I am a little anxious about that. So far we’ve been able to work with him on the basics though-sharing, turn-taking, saying “please” and “thank you” and he does pretty well with other kids, but things will undoubtedly get more challenging as he gets older. My other major challenges are related to poor executive function-things like organization, time management, etc. I’ve been trying to develop workarounds for those things.
Thank you for sharing the forums. I think there are a few Facebook groups, though I’m not sure which of the others are still active.
What you say about family being too far away to be helpful in a practical way is something that a lot of moms mentioned. I think this is a big change in parenting compared to our parents’ generation or theirs. As families become more geographically dispersed, it seems like many women are forced to look to other social circles (like church) or to nonprofit organizations for support.
My daughter isn’t autistic (but not NT either) but it turns out that she naturally learned to translate between autistic and nonautistic communication growing up. Now that she’s an adult, she’s a great interpreter of the NT world for me. If you son does turn out to be NT, don’t worry too much. 🙂 Kids are incredibly adaptable and they learn from a lot of sources, especially peers and teachers and other adults in their lives.
p.s. My comment above, shared over on Autism Women’s Network, was interpreted as support for Autism Speaks. I have a great talent for saying something and then having that something be interpreted as exactly the opposite of what I meant. This happens a lot so I can’t blame it on anyone but myself. 🙂 It probably comes from teaching and wanting to validate multiple positions even if I only agree with one. To clarify: I disagree with the autism-as-disease approach of Autism Speaks. At the same time, I sympathize with moms who don’t know where else to go and turn there first, because it’s on their radar (as it has a big budget and advertising power). I’ve seen some bloggers go after moms who post about the difficulties of raising autistic kids, and these bloggers attack these moms as being part of some kind of massive force of evil behind Autism Speaks, even if the moms in question aren’t even affiliated with Autism Speaks. Just wanted to make that clear. I sympathize with all moms raising kids on the spectrum, whether those moms are autistic or not. XOXO
Motherhood as an Aspie has been a long hard road but very rewarding. I loved doing your survey! It’s nice to talk about it with people who “get it.” For me, I have family just down the road including my grandparents ( we all married young) A decade ago when my daughter was born I suffered severely with PPD…when my son was born we knew something was different…and at 4 he had his Aspie diagnosis. I was next. My daughter followed…And wow, life looks different for us. We decided to make the leap to homeschooling which gave me a huge support system once I found the right facilitator. We have a local therapist here who helped our kids get government paid for therapy for their anxieties and I see my therapist once a month (covered by free canadian health care) and I have seen him for nine years now since my son was born. It really helps to have a third party listen in and give validation. In the early years I needed tons of support – now I have found our groove and we mainly stay in our home to learn and be…and it’s awesome. We also interact with the world but always have one person in our interactions who knows what we deal with and supports us…that makes all the difference. I was guided by peers and mentors in the younger child years and I think that made me so capable now. I read all I could get my hands on for parenting as an Aspie and wrote my own stuff too and sent it to our support system so they “know” what we are dealing with. I think communication is key and having a support who respects that continual learning process.
I get support online through a private blog and then I also have a public forum for when I feel the need to put more ideas out there. These two places really help me too. Honestly, its books and therapy and my children coming of an age where they can understand that has made all the difference. We continually discuss my meltdowns and theirs…why they happened, how we can prevent maximum damage, how to manage sensory stuff, how to learn in a tough environment, how to be polite yet enjoy alone time ect ect. It’s not ideal but I am in love with motherhood now…but if you would have asked me seven years ago I would have wanted to say I loathed it. I have never fit in with other moms ways but I offer my own way and I have embraced that…I rarely compare now and honestly feel my way equips my kids for what they need…:)
But it is also very hard…and at night I usually feel guilty for something I didn’t do “properly” like get to appts on time, feed a good snack, hug them enough, ect. ect…esp in my dyspraxia failure areas I feel a little upset at times but I end up crying and my kids end up saying I am the bestest ever…and I don’t feel bad that they comfort me, because they are learning that skill and that adults need to express too..Something hopefully they will be comfortable with ( well I tell myself that anyway!) It is very different tho and very hard and I am glad you are writing about it!
It sounds like you’ve curated your family’s autistic space really well. Thank you for sharing all of the things you found that are helpful. I increasingly see parents of autistic kids saying that they’ve switched to home schooling or plan to.
I think being emotionally honest with your kids and letting them see you struggle is a good thing (within reason of course) because it helps them see that adults have feelings and difficulties too and that’s perfectly normal. There is a whole language of emotion that we need to learn at some point in our lives.
That is a great article on AWN.
What are your thoughts about choosing to be a mother when already having an ASD diagnosis, fully aware that sensory issues and social deficits and all that isn’t magically going to go away? I know of course this can’t be a general answer, because it differs from person to person, there are so many other aspects that matter. So what I mean is that when you know there is a high likelihood that many of the inherent aspects of motherhood will present massive difficulties, and you are unsure if you can cope or if strong enough maternal instincts will kick in to outweigh the problems, or if they won’t.
As you know, I am not a mother. The whole idea of pregnancy, childbirth and motherhood feels alien to me (I feel spooked when near a heavily pregnant woman… a new human inside a human? No matter how much I tell myself that it is a natural part of life, it still seems very weird and slightly Alien-like (the movie series)). I like kids, but I find the high-pitched relentless screaming of a crying baby almost unbearably painful, and I need a lot of alone-time and personal space. Perhaps I would be a good mother in some regard… and at least, I have no doubt he would be a great father (and wants kids badly). However, if I have a baby and I can’t bear its screaming (for example), or feel constantly trapped due to being forced to be social all the time, or just can’t meet all the more external social demands of motherhood, then I can’t just return the child and say “Oh but I wanted one of those babies that don’t scream all the time” or “I thought I could learn it but it doesn’t work out, so… ”
Plus, as some other people points out, autism is a genetic disorder and I see many autistic traits in my family members too, including both of my parents – although they are both “well functioning” in society. Knowing how hard my life has been and considering that my age may be an additional risk factor, I’m considering genetic risks in addition to social risks. While having it so called “mildly” like in my case (which isn’t really mild at all, but just not obvious at a glance) comes with plenty of challenges… What then about the risk of getting a profoundly autistic child. I am not convinced it would be responsible of me to take such a possibly significantly heightened risk, considering the difficulty for the child, the cost for society and not to forget, how hard it would be on my husband and I. Some aspects of how my mind operates and even how my husband’s mind operates would be an advantage in that regard compared to some families (like clear rules, acceptance of individuality, many good routines), but still… I’ve worked with severely autistic teenagers, and although some of them were lovely persons, there is no doubt about the tremendous strain it put on their families… Even the families that seemed a bit autistic themselves. The strain was to almost constantly have to pay attention to the autistic individual due to the risk that they would act on sudden impulses and e.g throw a chair out of the window from fifth floor (this happened 3 times during the visitation meeting, according to the person introducing me to that job) or suddenly take the train to Sweden (happened too) with the couple of sentences required to buy the ticket suddenly added to an otherwise very small vocabulary (consisting mainly of whole script sentences). I am pretty sure that I wouldn’t be able to deal with having to pay constant attention to someone, not to speak of, I would feel almost constantly miserable due to my strong need for solitaire focus, dislike of trying to multitask, and general limited capacity for switching in and out of paying attention to people throughout a day… I would probably gradually fall into pieces, I’m afraid, and snap fairly often.
This is not a “no to kids” statement, just an expression of concern. I think I have many good qualities that could benefit kids, and I’m also known for being “good with kids”. I like to play and I prioritise kids’ need to learn and understand the world very highly, above most other things including my own convenience. I also usually find talking to kids more interesting and meaningful that talking to adults if there are both kinds around (but that doesn’t say much). However, that doesn’t necessarily mean I would be a good mother.
You raise a lot of really great points. In the 3rd part of the series, I’m planning to write in more detail about the decision to have a child when you know that you’re on the spectrum. A lot of women who answered the survey addressed this and the answers are truly all over the map.
Personally, I feel fortunate that I didn’t face the choice to have children in exactly that context. My daughter wasn’t planned and after she was born, it quickly became clear to me that there was no way I could cope with raising more than one child. I didn’t know I was autistic, but I did know I wasn’t cut out for being a parent. Still, I think I did a good job raising here and not just a good job for being autistic, but I think I’m objectively a good parent. And most of the moms who shared their stories said similar things, even though it’s very hard and sometimes requires sacrifices. But that’s the nature of parenting in general, isn’t it? It’s not easy for anyone and there are so many unknowns going into it. Yes, we could have an autistic child, but who better to raise an autistic child than an autistic parent. And we could have a child who isn’t autistic but who is born with some other challenging condition that was completely unforeseeable.
It’s an incredibly personal and difficult decision and there are no right answers. My husband wanted a lot of kids because he comes from a large family. It’s been hard to reconcile that with how difficult I found motherhood and my absolute certainty that one child was the right number for me. He knows now why I felt this way and it’s easier, but there is still some regret there. And there are a lot of autistic women who do have big families, often with multiple autistic children. I’m in awe of their ability to parent more than one child and wish I could have done it, but I’m also certain that my choice was right for me.
I’m curious whether by “trapped by being forced to social all the time” you mean being social all the time with your child? Because to me that’s the best thing ever. My daughter gets me in ways that no one else does. We’ve always been more like friends than mother and daughter. I know people say that’s an awful recipe for parenting, but it’s not the icky “I let her get away with everything” kind of parent-child friendship. It’s more of a “mutual respect and enjoyment of being with each other” way.
Yes. For example my husband and I get very well along and I enjoy his company, but I need a lot of alone-time and slowly grow desperate if I can’t get enough of long, coherent stretches of time by myself through a period of time. I know that sounds very selfish, but I really can’t help it, and I have tried hard to adjust and change but I keep having that need for solitude very strongly. think it is because I hate interruptions so much. I imagine kids interrupt quite a lot (I didn’t, as a kid… I was extremely self-entertaining after what I have been told. However, when I imagine “a kid” I imagine a so called normal kid = most kids I have encountered had big social needs for frequent interaction (although of course any kid is unique)…. It would be unreasonable to imagine that I had a kid and it would magically be just like I needed it to be, so I imagine a kid that doesn’t necessarily “get me”.
The first paragraph is a quote from your comment… Please feel free to insert quote tags, I must have forgot to put them in.
Hmmm, that’s a good question. I feel like my daughter adapted herself a lot to my needs. As a baby, obviously not. It was very hard to find alone time and I relied on my husband to spell me as much as he could. As a toddler, it was fairly easy to find ways to be together without a lot of neediness because toddlers are often content to play while you’re simply nearby them. She was also happy to do stimmy things with me or just be silly, which I like a lot.
As an older child, she would play video games or do craft projects in my home office while I worked (which was a special interest at the time, so “mommy’s working” was a socially legitimate “leave me alone while I do my special interest” excuse, I guess). We could chat occasionally while we each engaged in a separate activity so it had an element of “side by side” play to it. And we still do this. When she visits, we’ll both have our laptops on the couch so we can chat occasionally while doing our own things. There were times when I needed to be alone or was impatient with being interrupted more than would have been ideal but love is a strange thing–especially the love I felt for her as a small child. It overrode some of my needs in a way that doesn’t happen with anyone else.
Of course that’s not the case with every parent-child relationship but that was my experience. I also feel 0% socially uncomfortable around my daughter. She just really gets me and is very accepting and I’m fortunate to have that.
That sounds so very nice, so lovely to read.
When I think about it, I was very kid friendly when I largely lived at home with my two small half brothers for some years (approx 2. and 4yo… initially). I wasn’t their primary caregiver obviously, but more some sort of “play uncle” but I never rejected them, was always ready to push aside my own stuff and play, because I felt that it is important to “be there” 100% for kids when the time is right… Kids grow fast and suddenly they have grown up. I guess that attitude is a good sign.