The final post in the autistic motherhood series is posted at Autism Women’s Network: Autistic Motherhood: Honoring Our Personal Choices
It was a challenging one to write. My original thought was “I’ll write about the decision to have or not have children as an autistic woman.” Which turns out to be an incredibly personal and complex topic. You’d think I would have seen that coming, right?
Ultimately, what I concluded, is that each woman’s choice when it comes to parenthood is the best choice for her and each person’s situation is unique. There is no “decision” in the broad conceptual sense, just many individual decisions made for countless reasons and sometimes not for any particular reason at all. I hope that comes across in the article, because I very much want it to be respectful of our choices and of the circumstances that are unique to parenting as a disabled person.
A Postscript to the Series
There’s also something that I wanted to address at some point in this series–something that’s been on mind for months as I’ve been writing about motherhood–but I never found a way to say that I felt comfortable with. Since I’m among friends here, I’m going to just throw it out there as food for thought and hope for the best.
There are generations of women–my age, older, a bit younger–who grew up undiagnosed and came to motherhood without the knowledge that we are autistic. Being autistic and, for many but not all of us, being disabled didn’t enter into our choice. Thanks to an improved diagnostic process, there are now also generations of younger women and girls who make the decision to have children knowing that they are autistic. And that feels like a double edged sword. Yes, they have the advantage of knowing about how being autistic may affect their parenting ability. My concern is that they may also feel that being autistic somehow automatically disqualifies them from being a good parent or from being a parent at all.
I’d love to say that this is a theoretical concern, but a quick glance at the search terms that readers use to find my motherhood and marriage posts tells me that people are routinely wondering about things like “can I get married if I’m autistic?” and Alyssa at YesThatToo recently answered the (not very) mysterious question “Can Autistic People Get Pregnant?”
Why am I saying this? Because I feel like those of us who are autistic parents have a certain responsibility to share what we’ve learned with our younger sisters and brothers on the spectrum. To let them know that when the time comes, if they choose to become parents, there are many autistic adults who have been down that road and done a pretty damn good job of it and have learned a few lessons along the way. And if they choose not to have children, there are autistic adults who have made the same choice and as a community we’re here to support each other as we all do our best to navigate autistic adulthood.
I guess what I’m saying is, I know that a lot of autistic youngsters grow up hyperaware of the challenges they face and all of the (often negative) ways in which they’re different from their peers. I hope that as a community we can create not only more positive messages about the choices autistic people have in life but also a collective wisdom that the younger members of our community can draw on as they move into adulthood.
Updating this to add that Astrid wrote a great response post at Disability and Childlessness: It’s Complicated.
101 thoughts on “Honoring Our Choices”
I like this post. I will add a little and that is do not let other childless people make fun of your parenting style or choices, nor give critical advice. This recently happened to me, and yet I managed to remind myself to ‘consider the source’. As parents on the spectrum, we work to find best possible ways to keep our loved ones as well as ourselves healthy.
Great point. It’s impossible for anyone to understand what an individual is experiencing and we each have to do our own best in the way that works for us. I think for autistic people especially, the advice of well-meaning (or not) bystanders isn’t especially helpful. We tend to be pretty unconventional parents and if our kids are healthy and safe and generally happy, that’s perfectly okay.
As a mother of two who has spent my life trying to pass, imagining that I am succeeding, and pretending that I am not sometimes struggling with my differences, I very much relate to this. I think that I want to share though, that for me, motherhood has been where I have found myself. My experiences as a mother have been challenging yes, but interestingly I coped far better in the early years than my NT counterparts. I *did* have what I always refer to as ‘easy babies’, but late-night pacing and hours of nursing just didn’t seem to get to me in the same way. I often silently listened to other mums at the park in confusion, wondering why they found it so difficult. I didn’t understand that it was more difficult for other women to spend the day with someone who didn’t talk and only made eye contact with you if you sang ‘Early One Morning’ to them. I can sing ‘Early One Morning’ quite well now, and my social needs were not that of a NT mum. Yes there were executive function issues. Yes I had to tell my husband not to touch me quite often during those years, but they were beautiful dreamy years too. Now that my 11 year-old wants to listen to loud music well.. things are changing. Especially as we have realized that neither boy is neurotypical. I knew that I wasn’t neurotypical before I had children but I didn’t know that autism was the label. I don’t know what I would have chosen if I’d had the label, but when I decided that I wanted children the desire was so strong that I hope that I would have chosen motherhood all the same.
Motherhood has changed me more than any other experience in my life. And yes, I completely agree that I sometimes found the things that other mothers were struggling with to be very perplexing. I guess I always treated my daughter like a miniature friend. Not in a weird creepy dependent way, but in a “oh, hey, interesting small person who is a lot of fun to do things with” kind of way.
As she got older, we had to make a lot of adjustments and some of our rules at home were solely in place to accommodate my social and sensory issues (and I honestly have no idea how I survived her 17th year without having some sort of breakdown) but I still think I had a much easier time parenting a teenager than the average parent. In fact, we talked about that not too long ago and Jess told me that she found it hard to have so much more freedom than her friends had and it made her strangely more responsible and less of a risk taker because we left so much of the decision making about her behavior up to her. I guess, in short, we trusted her, and that seems to have worked surprisingly well as a parenting strategy. 🙂
I’ll stop rambling now. I don’t even know why I went off on that tangent except maybe to reassure you that the teen years can be tough and you may find yourself continuing down an unconventional path as a parent, but it can all work out fine in the end.
Interestingly, you sound allot like my mother when you describe the way you parented.
I find it challenging as my boys get older and I have to recognize that they have social needs and that I need to help them meet those needs even if it means social and sensory over-stimulation for me. The other thing that I have trouble with is meeting the needs of two very opposite boys. I think in some ways I would have been quite content with only one child but my husband wanted a second so badly that I caved. The boys love each other and when they aren’t driving each other other crazy (and me in the process) they get along well despite a four year age gap. But how do I keep one stimulated enough without overstimulating the other especially as I’m going through a period of executive dysfunction? I try to view these times as ‘periods of discovery’ as verses ‘rough patches’. My husband’s attitude has always been that ‘normal’ is highly overrated. He’s on the NT end of the scale but he’s a slightly hyperactive genius who gets bored easily and we keep him on his toes. We do allot of thinking outside the box in our house. 🙂
Managing two kids with opposite needs while trying to juggling your own sensory needs sounds really challenging! Maybe signing the one who needs more stimulation up for some outside the house activities that will wear him out while the one who gets easily overstimulated stays home? Although that in itself is a lot to juggle because someone has to drive him, etc.
We had the good fortune to have a finished basement and a big family room (that used to be an enclosed porch on the back of the house) so the house had two big rooms with doors that closed. I took the basement and conceded the family room to the teenagers so my daughter could have friends over occasionally. But she still had an early curfew for those nights–I was fine if she wanted to go to someone else’s house and hang out until 2 AM but there was no hanging until 2 AM at our house. 🙂
We do try to arrange things so that my husband can take the social high energy boy to activities while I stay home with the home-body boy but we recently re-located and are just finding our stride. Right now it is the high energy boy who is suffering. When the weather settles into summer and then again when September comes we’re hoping to find levels and types of activity and routine to suite everybody. It’s always a work in progress. Lots of compromises. 🙂
Beautiful thread. I concur. Parenting has been to most amazing and frightening experience. I did not know about Asperger’s until after T was dxd. Not only did it help me put my life in perspective, but it has given me insight which I feel it is my mission to share.
And you do it beautifully. 🙂
I feel the same when I hear other moms talk about their kids. I am also the odd one out playing with my son and daughter rather than sitting and chit chatting on the bench with the other moms. I do not understand what could possibly be more interesting nor more fun than playing on the playground with my kid. The other moms are nice, and I have yet to feel shamed by them but they always laugh and tell me I must be such a fun mom! I couldnt do the late nights. I am a very strict planner and having easy babies as well, I would always expect them to stay on script. So when their was a late night and they randomly woke up screaming and needing me, it was very hard and I had many tantrums/meltdowns on those odd nights. My daughter is an easy baby like my son was, except she wakes at night. At first she would sleep throughout and when she woke it would be hard to deal with but now its expected and part of my schedule for her so its much more easy to tolerate. I have/had my hubby take care of the babies when it was off schedule, once he would wake up to my annoyed frustrated teeth-clenched grunt he would gladly run in and take care of the babies while I adjusted myself to the dramatic change. I would say my children knew they would have a mother like me so they slept and ate and played and went to sleep on their own as if they knew I was expecting a pattern. They were amazing babys and I would not trade my autism for anything to be more like other moms. I feel I am able to understand them better, when they cried I knew it could be the outfit they were waring or the blanket they had might not have been soft enough. I could read them better than other moms read their babys and I just feel/felt more connected. I am not a cuddler, neither are my children but I feel I give them more in other ways and they know how much I love them by how much I do with them and I am hoping as they grow into school years and teen years, that we can continue the bond I have with them now. I think I will be that cool mom with boundries. Sorry to interupt your conversation I just liked what you said about the other moms and not getting their confusing! Sorry, i ramble too.
Sarah-I think than not always understanding the other mums, or being misunderstood by them, is why most of my friends are childless people. Also my boys were little nudists until they were four or so because they were calmer that way and I just understood this and didn’t question it.
In part because I would never have been organized enough to bottle feed– I have lots of trouble keeping the kitchen clean enough… (and shoot, I just had to go start my dishwasher. I forgot to earlier.) I breastfed both boys and I was allot mellower while I was lactating. Still a charming and disorganized space cadet, but I had far fewer meltdowns and when I did I got over them more quickly. I wondered if anyone else noticed that or was the sensory discomfort of breastfeeding too overwhelming to have noticed anything?. My midwife told me that prolactin helps mothers chill out. I just wondered.
I breastfed till both my kids were 4 months. Mostly because I live on dairy and have a hard time with limiting it which made both of my children sensitive and they both had to be on hypoallergenic formula. I was too much more calmer during breastfeeding. I found once it was over that I had tantrums and meltdowns twice as much. I am awful with keeping up with the kitchen so I have only two bottles I use everyday with each feeding. Makes it so much easier and less to keep up with. I miss breastfeeding because its the only time my children and I ever relaxed together lol. We all need to move constantly. We are a go go go family and its hard to enjoy each other when we all have a need to move so much! I was never really bothered so much by the pain of breastfeeding as my pain tolerance is very high but the sensory of waking up wet made me upset on more than one occasion. I do not do well with anything cold and wet. My son is 3 and is starting the nude attitude dealy. Its been a challenge to keep any form of clothing on 🙂
Very interesting article and post. Your respect for people’s came through clearly and gently – thanks for that. As someone who has decided not to have children (this decision was made years before I knew I was autistic), I’m pretty sensitive to the negativity in our culture towards that choice. But I didn’t feel any of that from your article. I think you’re getting just the right message accross – that autistic people, just like anybody else, should be free to make their own choices on the matter. I think it’s key to look at it as a choice, rather than something we have to, or cannot, do. My autistic boyfriend spent most of his life planning to have children when he had no desire to do so, simply because it was expected of him. Now that he knows its his choice alone, he’s decided not to. He also made his decision before we found out he’s autistic. Interestingly, had we been diagnosed as kids or teenagers, the same people who had been pressuring us to have children would have probably been telling us not to because we’re autistic. People just need to but out when it comes to life choices – deep down, people usually know what’s really best for them.
Thank you. Your comment is terrifically reassuring and you got exactly what I was trying to say. Regardless of what messages we grow up with, the choice really is each of ours to make and there are lots of factors that can enter into our decision and the least of those things should be the “can’ts or “shoulds”.
Interestingly, had we been diagnosed as kids or teenagers, the same people who had been pressuring us to have children would have probably been telling us not to because we’re autistic.
This is what I’m afraid will happen to far too many kids who are growing up with a diagnosis today. And that’s totally unfair.
I find your fear interesting. I’d say I’d rather people (all people, not just autistics!) be cautioned about how children might be more difficult than they expect, than have people with substantial impairments be pressured to have children even if it’s outside their interests and abilities. I also think that being diagnosed before child-rearing age is also going to give some people the self-knowledge they need to face parenthood.
Background on my way of thinking: Both my parents are probably somewhere in the “greater autistic phenotype”. I grew up with parents who couldn’t handle the stress and would have what might be called meltdowns–I especially remember my mother’s hatred that was probably really irritation + inadequate filter expressed at everything. She’d frequently yell at us that she couldn’t stand repeated sounds, for instance, which meant she was yelling at us for watching children’s television shows. Or for talking. There was a long list of things (including types of people) that she hated. Because she had internalized too much stigma against mental health, she never sought diagnosis or treatment and probably still denies anyone trying to bring up her weaknesses.
My own executive function, sensory, emotional, and social challenges were very obvious and very well-known to me before I was even in my teens, without anyone else labeling me or even hinting at them. I basically thought I was doomed to not succeed at anything. I didn’t understand that I wasn’t just bizarrely mentally “broken” in a large variety of ways, including severe anxiety and depression–didn’t understand that there were underlying neurological differences that made the world I lived in much harder, but that also made me part of a vibrant culture centered around living in the world differently, with the proper supports we need. I think having the label only makes me more likely to have children (though I still don’t plan on it) since I know there’s so much guidance and knowledge for people like me, whose challenges tend to stymie even most mental health professionals. It’s even a huge help just with dating (though I haven’t tried it out yet), since before I’d force myself to endure traumatizing physical contact because my communication and sensory issues made my needs so far from the norm that I didn’t think it was okay to require that they be respected (nor did I know that I could, say, get a tablet to help communicate those needs when the stress of physical contact made me go mute).
I don’t think arming kids with self-knowledge is going to hurt them, although if they face persistent bigotry of course it might. But being undiagnosed and having tons of ASD-related issues, especially having undiagnosed and untreated parents setting a bad example of how to parent with such symptoms and thus teaching their kids that parenting while neuro-atypical is impossible, does a lot to discourage young people from having children IMO. If it’s, “I have EF issues and I’m not sure my coping techniques and support network will be strong enough to handle kids,” vs. “I’m broken, there’s something effed up about me, all the simple things are hard so it doesn’t matter when the hard things are easy, I can’t even feed myself, let alone a kid, every relationship I try crashes and burns and does me serious damage so how will I ever find a coparent, people tell me I’m unempathetic and rude, I can barely handle the stress of doing laundry let alone pregnancy,” I’d much rather the person in question have the explanation. Plus, deciding not to have kids because you won’t be able to cope is actually a good thing if you’re right about it, and more knowledge hopefully increases your chances of being right.
I agree with you that in an ideal world, knowing is better because it gives the individual the chance to realistically assess their areas of need and plan accordingly. But that’s only going to happen if a person has gotten mostly positive supportive messages about being autistic from the start and is surrounded by people who are ready to support and encourage them as parents.
The problem is that so many autistic kids aren’t getting those messages. What they’re getting instead is “you’re broken and we’re going to give you a zillion hours of therapy a week to fix you and by the way here are all the ways in which you’re less competent than your peers.” If all a kid gets growing up is messages about all the ways in which they’re less able to do things than their peers, they may actually have an overly negative view of their capabilities as an adult, partner, parent, etc. There is a huge focus in the education of DD kids on what they can’t do or what they do differently (with the implication that different is wrong).
So it’s a damned if you do, damned if you don’t scenario where without a diagnosis we might feel inexplicably broken but with a diagnosis we might be explicitly told that we’re broken. That’s why I called it a double edged sword. With the exception of that ideal world, I don’t see either situation as the best case scenario.
Also, I think it’s unfair to class undiagnosed (or neuroatypical) parents as more likely to be bad parents. There are bad/abusive parents across all neurotypes and conditions. Being autistic, diagnosed or not, doesn’t automatically mean someone will be a bad parent and I think there are plenty of people with autistic parents that would consider them good role models.
I’m glad the comment was reassuring.
I think your fear, unfortunately, is well-grounded in reality. People love to make other people’s life choices their business, and it seems like they feel they’re especially obligated to do so with autistic people.
Hopefully, there’ll be enough other messages, about choice and dignity and autonomy, that those kids will hear or read. I think your message and your raising awareness are definitely helpful.
This honoring choices is a great topic. It also touches on the things that mke up our identity. For example, I’m childless and will likely remain that way, and autism is a factor in that. This being the case, I for more than one reason dont’fit in with the general women’s community on ht eInternet, which is not only catered to NTs, but about ninety percent to mothers or mothers-to-be. Being that I can hardly develop ofline friendships, it’s really tough as a childless, autistic woman. It could be the fact that I’m childless not by choice (in the sense that I wish I could be a parent but I can’t due to the extent of my disabilities) so I see mothers everywhere, but maybe that’s not all.
I don’t think it’s just your perception that large parts of the online world cater to mothers or mothers-to-be. There really is a big presence of moms online–especially in places like blogging communities, the autism community, Facebook groups, Pinterest, etc. That must be very alienating for someone who is childless. I do know that there are other readers here who have chosen not to have children and perhaps in autistic communities that might be a more common situation than on the net in general.
Despite being a mother I find that I get along best with single childless women and I too, often find that there seems to be mother’s everywhere. I worry that single people might not want friendship with a mom though.
Lol, as a single adult I worry that parents don’t want to be friends with a single person.
Beth, as a single woman I worry that mums might not want to be friends with me! 🙂
Just seen that Adair has made the same point 🙂
Adair and cathybird -I’ll be friends with you! 🙂
aww, thanks Beth 🙂
Fantastic article on AWN and this post too, thanks a lot. This is quite relevant for me, but I’m not sure if it is too personal to discuss, I considered to send an email instead. On the other hand, other people are writing about these personal considerations and it is very useful to me to read, so most likely some of what I write can be useful to others too. And I’m anonomymous anyway. So, here it goes…
I was glad to read that 2 of the respondents were thinking about adopting because they found the idea of pregnancy too difficult. I find the idea of pregnancy very scary and alien. The whole concept with a person growing inside another person and then making its way out under great pain with lots of blood (not to mention all the unwelness and things that can go wrong during pregnancy) seems to me like a scene right out of a science fiction horror story, and I just find it very hard to accept that’t the way it works. That’s despite the fact that I have actually assisted and/or witnessed countless animal births (cattle, pigs, guinea pigs, and one by my dog). That was either through work (farming) where I had to accept it, or hobby (guinea pigs, and my dog’s one litter of puppies), where it was fun and fascinating to help “produce” new animals. And I guess a way to study the phenomenon without personally have to go through it, although that sounds cowardish now when I write it.
I’ve never felt an urge to have kids, although I like kids, and beyond certain reproductive issues I’m also concerned about all the aspects of parenthood the women in the article talk about – I’m so glad to read that others experience similar aspects as problematic. Lik coping with the practical responsibilities – a myriad of little chores every day, basically drowning in little things that need done and constantly falling behind, constantly exhausted (executive function issues), sensory sensitivities, pain & stress (high pitched noise can be very painful, such as baby screaming and the experimental high pitched “fun sounds” babies and toddlers tend to make – plus general sensory overload), and my strong need for solitude where even just having my husband around often feels like overwhelming. I love his company, I just don’t need that much company, and when I haven’t had a high enough dose of solitaire focus on something that really captivates me, then it can be very stressing to be talked to, I feel like my life is just a relentless series of interruptions.
I’m glad the article also touched upon the genetic aspect – autistic parents have a higher risk of having an autistic child, and there is no guarantee that would be in the “aspergers” end of the spectrum anyway. It could be a child that will need life long support with even simple daily functions and constant monitoring growing up. That would put a tremendous strain on the family, but not just that – also on society. Is that fair? It is my choice, but it affects other people. I strongly suspect that I’m not the only person in my family with aspergers – I think my dad and maternal grand dad fully meet the criteria too, and 2 of my 3 siblings have a profile in that direction too, albeit not the social dysfunction I’ve struggled with.Many more family members display autistic tendencies/traits. I think that puts my risk of having an autistic child fairly high.
On the other hand, there are a great number of aspects that would make my husband and I great parents as a couple, and my husband has in many way shown that he is willing and able to stay responsible through challenges, and also help make up for some of the points where I have limitations (and vice versa… I also complement him). He will make a great parent and want kids very much. We’re great dog parents – we have 2 big dogs, and they are harmonic, well behaved and happy creatures taken very well care of, their needs are highly prioritised in everyday life and we are very happy aboout them. I think our qualities as dog parents is a reasonable proxy for how we would be as parents, although of course kids are much more needy and challenging than dogs. Also, while I have limitations as a parents I also have qualities that are great for kids and am actually known to be great with kids. I’m highly present with kids, genuinely attentitive, respectful, fun, supportive, and enthusiastic about projects, creativity, learning, and help making the world a great place to live in . I prioritise play with kids much over conversations with adults, and like physical play & games (great for facilitate motoric development in kids, coordination, balance, physical confidence etc). I’m great at playing overall. I’m good at imposing discipline too (as in dog rules, dog training – I guess the core principles apply to kids too; teaching & enforcing good behaviour). I’m extremely patient and able to postpone my own needs. I have many skills and knowledge that’s fun and useful for kids to learn. So, I definitely have strong poins as a potential parents, and my husband and I together could be quite great parents. Not perfect, but no parents are perfect.
The thing is, due to my husband’s recent disease and treatments, he will no longer be fertile for at least several years and possible permanently, and in any case due to our age that’s it. He has had a sample of sperm stored & fertility checked, and that sample is now our potential kids! – via IVF, that’s the only chance now. That suddenly makes the decision of kids VS no kids an abruptly clear cut and sharp one, that has to be taken now (~soon), or otherwise no kids is the answer. So your article and this topic could not have come at a more relevant time. I very much understand all the reasons given by autistic women who have chosen to not have kids at all. Also the ones about life having been very difficult, and how fair is it to risk having a child that has to go through an unusually difficult life? I think my life could have played out much better with understanding/self-understanding and support, but it would still have been a difficult life – and still is.
So, as you can hear, the decision is not taken yet but is highly relevant right now. What we will probably do is to see an IVF counceller – a lady who helps people decide if they want to try to have kids via IVF – and just put all our cards on the table, positive and negative, and ask for her advice/judgement. I’ve made a draft/brainstorm listing all the positive and negative factors under 3 headings: as a couple, me as parent, and my husband as parent. Once my husband is done with the last treatment, then we’ll go through it and revise it /he’ll add thingsI haven’t thought of, and then we will arrange a meeting with the lady and see how that goes. That will be within the next 3 months or so I think.
First, I hope your husband’s treatments go well. I can tell you’ve put a lot of thought into the decision that’s looming and it sounds like you’re getting closer to pulling the trigger. Like your situation, my husband was the one who very much wanted to be a parent (to more than one child) and he was a huge source of support, especially when Jess was younger. We have very different strengths and complement each other well as parents.
I love that you included “great at play” as one of your strengths. I think it’s one of mine as well and play is so important for kids. It’s a great way to bond with a child and to teach them important life skills and just to have fun as a parent-child pair. Jess and I still enjoying playing together–mostly games but we also have very similar odd senses of humor that we enjoying sharing.
I guess my thoughts on the “higher rate of having an autistic child” are that (1) it seems like autistic parents are well-suited to raising autistic children, even those with very significant needs (the blogger InnerAspie comes to mind) and (2) it’s impossible to know what’s in store for your potential child. There are so many possible “differences” that a child could be born with that we have no way of predicting. There are also all sorts of things can happen to a child as they grow up, including really serious illnesses that aren’t foreshadowed in infancy. So while it’s certainly a consideration, an autistic parent could end up having a child with a completely different set of challenges unrelated to autism. Not sure if this helps at all, but it’s something I’ve thought a lot about.
There are definitely stressful elements to being an autistic parent that I think a lot of parents just don’t have to think about. It’s not a metaphorical walk in the park, but I’m glad I’ve had the experience. Especially now that I’ve crossed the finish line of day to day childraising. 🙂
Thanks for your reply! My husband is doing fine now, and hopefully will get completely over it.
You are right about playing (and teaching/learning) being a great way to bond with child… That’s one of my really strong sides. My husband is very playful too.
There are so many possible “differences” that a child could be born with that we have no way of predicting. There are also all sorts of things can happen to a child as they grow up, including really serious illnesses that aren’t foreshadowed in infancy. So while it’s certainly a consideration, an autistic parent could end up having a child with a completely different set of challenges unrelated to autism. Not sure if this helps at all, but it’s something I’ve thought a lot about.
No, that doesn’t really help because while it is true that it is impossible to know what’s in store for one’s child, those unknown challenges are not relevant in regard to ethical concerns because they are completely unknown and unpredictable. It is different when you know/estimate there is likely a significantly heightened risk for something that will cause severe life difficulties, which you are somewhat experienced with.
Any kid is a “burden”, of course… However, the profoundly/LF autistic kids I have experienced were very high maintenance. I think I have mentioned it before, but otherwise: I have worked with LF autistic kids/teenagers in an institution and in their homes in 2 of my many casual jobs years ago in Denmark. Most required almost 100% attention from their parents or staff at all times lest they were likely to cause some profound mess/damage or get themselves in danger. My job in the in-home service was to take the autistic person out for X hours to give the parents a break, so they could get practical chores done, regenerate their relationship and just relax without having to focus on keeping their child out of trouble, so they didn’t go down with stress (that’s a service my home country Denmark provides/d to families with autistic kids). I am not saying that every autistic child is that high maintenance (my “clients” were obviously the ones who had applied for and been granted this service, and as for the institution-kids, parents don’t give up on having their kids at home easily), but no doubt many are.
(I wasn’t high maintenance myself as a kid, on the contrary… I was unusually self-entertaining and, meltdowns aside, mostly just kept myself busy without getting in trouble)
If I knew that my potential kid would definitely be profoundly autistic, then I would chose to not become a parent. But I don’t know, I’m just trying to estimate various risks and trying to make a responsible decision that I can cope with in the long run, that my husband can cope with, and which won’t be a lifelong uphill battle and resource drain on society/services. There is plenty of need for services already without me weighing in on the demand side, and there are also plenty of other worthy needs that require resources too beyond the need for health and support services.
I have personally been an expensive person due to mental health problems etc, although that isn’t really my fault or something anyone could have predicted. But as a potential parent who now need IVF to actually have a child / most likely with some level of public subsidy, am with the awareness I have now, I have significantly more information than my parents had when they had children – they didn’t have a clue about any abnormal risks, or about their own abilities as parents (not great). I am happy now that I am alive, but there have been many times in my life when I wished that I did not exist. So was it worth it to go through all that and now have a fairly OK, even good, life? I am not sure. I haven’t reached the point on the scale yet where the positives outweigh the negatives if I think of my life as a whole, past and present. I definitely think the concerns about passing on the difficulties to a new generation are valid, although I am not sure what the answer is.
There are definitely stressful elements to being an autistic parent that I think a lot of parents just don’t have to think about. It’s not a metaphorical walk in the park, but I’m glad I’ve had the experience. Especially now that I’ve crossed the finish line of day to day childraising. 🙂
That is lovely to hear:-) Thanks for your encouragement, positivity and insightful thoughts.
Correction: and in their homes… sounds like it was the same kids, that wasn’t the case. It was 2 different jobs and I didn’t have anything to do with/in the families/homes of the kids in the institution.
That’s actually kind of interesting: before I knew I was autistic I had the same view, that it would not be within my capabilities to raise a severely disabled child, because I knew how easily overloaded I get and how shoddy my executive function is (although I didn’t know it had a name back then). Now that I know I’m autistic, and have read so many stories *written* by those same severely disabled people, I’ve made a 180 degree turn. Yes, my overload and EF might still be a problem, but these kids deserve every ounce of love I can give them, and I don’t have to do it alone. They, and I, have the right to live a full life and the right to get support from society in accomplishing that. We all help each other in achieving things that are easy for one person and difficult for another. I support people who have trouble making their email work. I support friends wanting to have a day off by taking care of their kids. I support the disadvantaged in society by working a high paying job and paying taxes. That’s what being part of society means to me. And so it’s kind of ridiculous to feel (as I used to do) that I’m not entitled to that same kind of support, even if I or my hypothetical disabled child need it in different ways than most people. I don’t have to do it alone.
It reminds me of the old saying “it takes a village to raise a child”:-)
I am not in a similar situation. I have never had a high paying job – I have mostly struggled to hold onto and cope with casual menial jobs – and I don’t know if I will be able to get & work a high paying job (that would be great. I do have a high education), I’ve maintained my current part time job since 2012 but my coping skills & motivation fluctuations, for the time being I really dread the people aspect of it. I don’t really have close friends who I see on a regular basis, although my husband does (and to some degree I can consider them my friends too, although in a more secondary way). I like the community idea of swapping strengths and weaknesses though, but I don’t currently have a network like that, and am not the most tolerant person, get very quickly exhausted with people et.c., so I am not sure if that would be a realistic parental support system in my case. It does sound nice though and it is a good point, a family isn’t necessarily an island… it can be hooked up with other people, networks and communities who can be of help, and usually is.
This is a hard discussion to have because on a practical level I know what you’re saying. Having a heritable condition creates a known unknown whereas the other possibilities are unknown unknowns. And there is a chance that an autistic child will need substantial supports. And this is a very real choice that you have to make, which will affect the rest of your life, so it’s different from talking about theoretical concerns. And you’ve worked with children who had significant needs, so you’re speaking from firsthand experience. And I don’t think autistic people should be told how they can talk about their life choices or what concerns they should or shouldn’t be allowed to have or anything really. We should be able to talk about the good and the bad honestly and openly and not be judged for that. Because we’re all coming from different places and have struggled to varying degrees and we shouldn’t be made to feel bad about the truth of our experiences.
Having said all that, I have a moral objection to talking about disabled people as burdens or as taking a higher toll on society than other people. It hints at putting a cost on a human life and saying that one life has less net value to society than another, which historically has never ended well. I get what you’re saying about strain, which is another way of saying that disability has negative externalities, both on society and the family. That’s absolutely economically true, in both pecuniary and nonpecuniary terms. But every human being has negative externalities and if we add those up over the course of a lifetime, it’s impossible to say that only disabled people have high negative externalities or that a disabled person’s negative externalities are going to be higher than the average person’s. It also fails to take into account the positive externalities, which in the case of disabled people are harder to measure because they aren’t pecuniary or aren’t substantially so. We are more than the sum of our tangible costs and contributions to humanity. Or at least I’d like to think we are.
So I guess what I’m saying is that I understand where you’re coming from and I also understand where others on this thread are coming from (empathy! perspective taking!) and I find myself standing on the knife edge of the middle ground yet again.
And I hope you don’t feel ganged up on with all of these responses. This is obviously a highly emotional topic and it’s hard to talk about both big-picture disability advocacy and individual personal reality in the same breath. It’s a bit like trying to find that perfectly average family who has 2.1 kids.
It is important to remember that I am not talking about “all disabled persons” in general which can be a wide range of people with different conditions and personalities, and not even about “all autistic kids”, but about my case and my considerations based on my life experience, my mental set-up, my family history and the verbal and non-verbal insights and knowledge I have about myself and my background. I am not saying that anyone with a risk of having an autistic child (or chance… depending on how they see it) ought to chose to not have a child, because everyone’s situation is different and comprises a combination of many aspects.
The cost/effort/strain aspect is a real aspect that requires real resources at a level of intensity from parents, network & society that is significantly above the average (I don’t have any numbers to show for it, but that is just common sense… combined with some first hand experiences), I’ll maintain that… it is however only one of many aspects, which all together make up a speculative “net outcome”. That might sound cynical to some, but it isn’t… It is responsible to do scenario planning and consider if the speculative sum of net challenges and net negatives is highly likely to outweigh the net positives and net capacity to cope, so that subject of considerations (parenthood) isn’t with very high probability a “recipe for disaster”.
Since I’m already aware of a number of factors that will almost certainly decrease my capacity to cope with a range of both typical and atypical child rearing challenges, the “net challenges” and “net negatives” side is very important; I don’t want to create a tragedy if I can avoid it. No one knows what will actually happen of course, so it is all just about probability. “Aspects” is the operative word… To refuse to factor in an aspect of the overall scenario because it may hurt someone’s feeling to hear about it, doesn’t help anyone. I could of course opt to not include it, but that would be somehow fake and I also think it is an important and valid consideration to include in the discussion, I don’t think it is morally objectionable to point it out and talk about it as a valid personal considerations, albeit certain bombastic general conclusions could be morally objectionable.
I meant to say:
“It is responsible to do scenario planning and consider if the speculative sum of net challenges and net negatives highly likely outweighs the net positives and net capacity to cope, so that the subject of the considerations (parenthood) has a very high probability of being a “recipe for disaster”.”
(Just in case the typos, poor phrasing and missing words ruined the meaning)
That is a great place for you to stand! I mean it is very useful to have you standing there, summarising opposing perspectives and bringing things together.
“it’s hard to talk about both big-picture disability advocacy and individual personal reality in the same breath” – that is so very true.
Also, I’m not into the disability/autism advocacy culture and what I see as its typical collective profile of attitudes, interests, linguistic/political correctness or background. I did feel a bit like a cat in a dog house talking about the risk and potential strains on society of having an autistic child, and was prepared that some people wouldn’t like it.
I do however think that it is important to include a diversity of experiences and perspectives in a dialogue/discussion, not just the popular or harmless ones that no one will object to. Otherwise the community will end up comprising a large amount of fairly similar individuals with fairly similar backgrounds reaffirming their group identity through fairly identical perspectives and opinions, consistently agreeing and expressing support for each other, and that’s it – No development and very little power to communicate beyond the boundary of the group… and progressively shrinking collective understanding of outside perspectives.
I think it is very important to convey missing/excluded/unfavourable information, even if it doesn’t conform to the prevailing collective attitudes. There may be a quiet minority still hanging on to the edges who do acknowledge different perspectives, but who dare not speak up out of fear of being “ganged upon” or ostracised in the community. It is important to hold onto a degree of inner diversity in a group/community/culture (although too much can also hamper development) otherwise the whole community just grows more and more intolerant to differences and aggressive to conflicting perspectives, until it fragments into antagonised fractions that can’t and won’t see other perspectives than their own. (Just like all the “People of Palestine”ish fractions / terror cells in “Life of Brian” (Monte Python)!)
I don’t expect being directly ganged upon/bullied though, and I also don’t think that was the case here at all, it was just people with a different perspective from mine expressing their opinion in a civilised tone. (as far as I can see).
I do however think that it is important to include a diversity of experiences and perspectives in a dialogue/discussion . . . There may be a quiet minority still hanging on to the edges who do acknowledge different perspectives, but who dare not speak up out of fear of being “ganged upon” or ostracised in the community
Yes! Amanda Baggs recently wrote a post about exactly this: http://youneedacat.tumblr.com/post/59378358045/there-is-not-one-autistic-community
I hope this can be a place where people feel comfortable expressing different perspectives. I’ve found that respectful disagreement helps me question and refine my thoughts on tough subjects.
Thank you very much! That is a great article! It explains the structure of a cultural pattern I’ve felt over long time, but been unable to grasp and express as a concept with facts and words… The reason I don’t identify with or engage in autism advocacy/activism. Amanda Baggs’ article is hugely helpful in mapping and explaining the collective profile of what I also thought was the autism community… Now when I see it that way it makes more sense, and I can see what “the gap” I was sensing is.
Donna Williams has also described observations about online autism culture’s collectivism (“group think”) that resonate with my impressions.
Most people who communicate and share the way they think in “the” online autism community – or the ones I encounter – don’t at all fit the profile of most of the profoundly autistic persons I either worked with directly or observed around me at the time period I had those jobs. My younger self’s reality doesn’t match the profile either, although I have always been verbal (mastered words… not that I always talked), white, intelligent, normal-appearing (even if sometimes only as initial impression), et.c. I’ve had very delayed social development, and my life quality has improved only because I have caught up on certain key areas and therefore been able to establish surroundings/relations I can thrive in.
Although I may match “the online autism community” segment Amanda Baggs describes on some key profile criteria, I don’t on personality characteristics. One of the biggest gaps is that I am not nearly as collectivistically minded as most people active in the community appear to be. I have a much more fact/information/analytical approach (in general), weak to non-existent sync with collective sentiments (so it doesn’t really affect me *how many* mean/repeat/feel a thing), tend to approach discussions as analytical information correction tasks if I am not being careful to be more people-oriented and aware of feelings, and am less supportive and empathetic than most people appear to be… everywhere, and in “the” online autism community too.
So online too I really have to try to be much more aware of others’ perspectives and feelings and politics, group dynamics and all the usual stuff, than I naturally am. For some perhaps this is can be an issue with real time face to face communication but not in writing, but I am exactly the same way in writing and have to be really cautious to remember to factor in peoples’ potential emotional reactions (I have made plenty of mistakes). I’m now thinking that maybe I’m just part of a more individualistic segment who is not represented in the community because they have abandoned it because they are not interested in the autism and disability activism stuff & slogans… which also applies to me. On the other hand, I am still here:-) so maybe not.
I read another great article by Amanda Baggs long time ago… Not about the same topic, but where she referred to other interesting dynamics of autistic group identity. I’ll try to find it. I thought Amanda Baggs had gone missing from the Internet a while ago, I didn’t know she also has a Tumblr blog! I am glad to see she is still active online, and still writing great insightful articles.
I think there is considerably less agreement in the online autistic community that there appears to be at first glance but I’m glad Amanda wrote this because I’ve been hearing quiet conversations taking place about this more and more over the past six months. And you’re right that people don’t feel comfortable speaking up so I commend you for that.
I don’t especially fit in anywhere either–I’m too middle of the road to be a true advocate by some standards and too radical to be moderate by others. I guess I just stumble along, doing what feels right to me. I’m a writer at heart and an accidental advocate. 🙂
That is good:-)
Amanda Baggs just wrote a new blog post that is highly relevant and wise, regarding to social power in communities, language policing and group conformity, especially in regard to the autism communities: “So I was taking to a friend about power”.
Thank you for the link – I read the post last week when you added this comment and enjoyed it. 🙂
I really want to question the idea that a disabled individual who needs constant atypical supports is a “tremendous strain” on “society”. The fact that society isn’t organized in a way to provide for everyone’s needs with love and love for the caregivers as well is the strain, not the individual. So while I have no problem with the prediction that having a child who needs constant monitoring would be a strain on the family, because we live in a society with messed up priorities, I don’t think you owe it to “society” to keep your potentially disabled child from existing, and I don’t think being forced to accommodate for people with atypical needs is even a bad thing for society.
What places a strain on society?
Greed. Production of nuclear missiles. Subsidizing fossil fuels and thereby destroying the biosphere quicker. Market failures, like how some people starve to death while others go on vacations in their personal jets. War. Child abuse. Murder. Sexual assault. White-collar crime. Unethical lending practices. Racism. Alcoholism. Meth. Excessive gambling. Undervaluing of education. Past genocides.
Having to adjust to take care of people whose needs aren’t met by default doesn’t put a strain on society. It heals it. I completely understand if anyone doesn’t want to be the one fighting all of society’s failures to get their kid a decent life, but I don’t for a minute agree that society is somehow hurt by reallocating resources to something that’s actually a good thing to do.
I really want to question the idea that a disabled individual who needs constant atypical supports is a “tremendous strain” on “society”.
[…] Having to adjust to take care of people whose needs aren’t met by default doesn’t put a strain on society.
Of course it does. You can re-frame it and re-name it, but you can’t re-fact it. Extra needs for special services obviously puts financial strain on society. Any society, like any household or business, obviously has a budget and a range of priorities (which differ from society to society), resources are generally finite and limited by the tax threshold a population will tolerate, and have to be allocated between a wide array of worthy needs and issues, of which disability services is just one of many.
That said, with “society” I suspect you mean the American society. I live in Australia and have grown up in Denmark. Denmark, along with the other Scandinavian countries, has one of the world’s most elaborate welfare systems with free education, health care and many other services. Australia has a pretty good welfare system too. I am lucky and grateful that I have actually received quite a lot of support, even if the usefulness of some of it was limited (and some was traumatic).
The US, as far as I know, is badly lacking in public services, particularly health services, compared to other Western countries, but then the tax is very low too – the disparity between rich and poor is apparently huge in the US. The Danish income tax is around 40something percent in the low income range, and then goes up from there… so the budget for services is obviously much larger and public services are a high priorities, but it comes at a cost that many societies just wouldn’t want to pay. And some Danish people are still complaining that they don’t get all the services they need, and a lot still blame society for creating or failing to solve their problems or someone else’s problems, as if society is liable for anything that goes wrong. But society is everybody, is isn’t like a giant parent that can or ought to solve all its children’s needs and problems and make sure no one is unhappy.
So while I have no problem with the prediction that having a child who needs constant monitoring would be a strain on the family, because we live in a society with messed up priorities
I disagree with this too… having a child who needs constant monitoring puts a strain on their family no matter what, society isn’t to blame for that. That said, supports can be a valuable, and in many cases a necessary means of easing the strain on families so they are able to thrive and maintain their balance/sanity/quality of life. So if you mean to say that support need to be provided to autism families to help them function and thrive as family, I don’t disagree with that. My job role described in my reply to Cynthia above was to provide such a service to easy strain and help families maintain quality of life, I think that was definitely helpful for the families.
What places a strain on society? Greed. Production of nuclear missiles. Subsidizing fossil fuels and thereby destroying the biosphere quicker. Market failures, like how some people starve to death while others go on vacations in their personal jets. War. Child abuse. Murder. Sexual assault. White-collar crime. Unethical lending practices. Racism. Alcoholism. Meth. Excessive gambling. Undervaluing of education. Past genocides.
And many more things put strains on society, all of which are equally irrelevant for the discussion about making a responsible, a informed as possible choice as to whether have children or not, knowing that both a parent and perhaps also the child will struggle with core aspects of life and perhaps be dysfunctional in these regards – social integration, ability to filter sensory information, executive function… ability to work, make and keep friends, understand and feel part of the surrounding world… I see no point in blaming “society’s messed up priorities” for suffering caused by core deficits combined with the combination of basic psychological needs (like belonging, safety, achievement etc) and social expectations. Sure there are ways to learn to with, and in many cases work around, specific deficits, and supports can play a valuable role in that regard. Self-insight, self-acceptance and others’ genuine understanding is also incredible valuable life-improving factors. However, the suffering and confusion itself is fundamental, it has to do fundamentally with being different – being a minority – being unable to be understood, to connect – be unable to do what others take for granted, be overwhelmed and unable to interpret and navigate one’s environment effectively. And this is relevant to the discussion, because as far as it has a genetic basis, I would risk putting a new person down on a similar type of path, and it might be worse since we’re also having other risk factors against us – age etc.
Ps. I apologise for the typos and missing words et.c… I am not a native speaker of English and very tired, time to go to bed I think.
Thank you for writing this piece. I found it refreshing and insightful. I am an autistic mother. I didn’t know I was autistic till my son was around 18months. This knowledge was very overwhelming and completely changed how I viewed myself, positively and accepting of who I was for the first time ever. At the same time I experienced autistic burnout after years of trying to hold myself together and become more normal. That became an obsession, unfortunately, which was quite unhealthy for me.
I at times wish I had waited till I had sorted myself out before having a child as I found the adjustment to motherhood traumatic. I was so naive and completely unprepared. I was immature and had too many issues of my own. I have grieved for this. Ultimately I am truly grateful that I am finally happy with who I am. I am recovering from burnout, still fairly fragile but my self-knowledge helps me to pace myself and keep my life more balanced. I am starting to re-gain confidence as a mother, bond with my son and take on more responsibility as a mother. It’s been a turbulent journey but worth it. I honestly don’t know where I would be if I had not considered the fact that I might be autistic. I enjoy parenting. It’s not my passion though. It’s my responsibility. I treat my son as an equal a lot of the time, it’s my responsibility to guide him and help him learn about the world, I don’t see the point in using the fact that I’m bigger and know more to intimidate and control him. I prefer to use gentle guidance and leadership. My son teaches me so much about myself every day. He’s a mirror that I see myself in and I see things I don’t like so I work on improving things. If that makes sense. I’m incredibly grateful for him. In some ways he saved my life. If it wasn’t for him I would never have sought a diagnosis. So whilst it has been turbulent and difficult, it’s finally starting to get better. I’m rambling a bit and have repeated myself, but you get my point.
I blog about motherhood and other experiences. I hope my blog will help other autistic mothers and potential autistic mothers in their journey. So that they can avoid the mistakes I made. That is my hope anyway.
I found out when my son was 3 that I was autistic. I went through the same feelings as you. Trying so hard and being obsessed with trying to feel “normal” and BE “normal” for him but now I understand WHY I have had these limitations and it has made my parenting and life in general much less stressful than before. My son is my best friend and my equal and we have a bond like not many mother and child do. I am grateful for him in every way and even more grateful for my recent diagnosis. Now I know why we understand each other so well. And I do not force myself anymore to keep up with other mothers. My son gets more ME time which is more than I can say for other children and their parents. I would much rather deal with our relationship as mom and son than worry about multitasking throughout the day to make my home sparkle and decorated. I hope you have more ease in your life as well with this life changing/understanding.
I was unprepared from a maturity standpoint too and the learning curve those first few years was incredibly steep. I couldn’t have done it without my husband’s support and input. For me, things started to improve markedly when my daughter hit school age because that meant more structure to the day and more alone time for me. Also, the more independent our kids become, the more breathing room we get and the better they’re able to understand that mom or dad has some unique needs that the rest of the family needs to accommodate.
It’s great to hear that things are getting better for you and you’re recovering from burnout. It can be so hard to find steady ground again after a long period of burnout like the one you experienced.
Arggh! That last bit came out wrong. I do not think my son is a mistake. I meant I hope that other autistic people that are parents or considering becoming parents can be more prepared than I was. Words are just not coming out as well as I would like them to. Apologies.
I got what you meant exactly because I’ve been there. 🙂
I am so glad I found out I was autistic after I had two kids and was pregnant with a third. From all that I have read, the information on autism and parenting is that it can’t be done or that it’s horrible. That lack of self knowledge opened me up to accepting the challenge of having many children and I am so glad. One child is hard. Two children is a huge transition that suddenly makes life much much more difficult. Three is not so hard as going from one to two. Had I known I was autistic before any of my children were conceived or even before I got married I would have been scared off of even trying. It is so unjust, not just to the mother but to those potential unborn children.
Just because someone is on the spectrum doesn’t mean they won’t be a good parent or that if they have an autistic child themselves it won’t be a huge mistake. My own mother is on the spectrum. I was always her helper. I would navigate stores for her and take the fastest route so we were outside as soon as possible. I would memorize driving routes and be her navigator before I was able to drive. Together we would learn new skills and try new things we were too afraid to try on our own. She can draw, paint, and sculpt beautifully. I am able to repeat any pattern for her with sewing, knitting, or crochet. She cooks, I bake. We are like two sides of the same coin. We help each other and enjoy each other’s company. She had three children with two on the spectrum and I adore her. She has given me so many pointers on how to survive motherhood.
One thing that worries me is that if I were to receive a formal diagnosis of autism, then it would be used against me with my children. I want to homeschool, but would a diagnosis hinder my own children’s progress in school? Would the children be taken from me? This is why the only reason I will seek a formal diagnosis is if I need to return to the workforce, hopefully when my boys are in college.
I smiled when I read your comment about going from two to three because I have a friend who has seven kids and she said everything after 2 was pretty much the same. You know, in case you want a half dozen more and aren’t sure. 🙂
On a serious note, what you say about wondering if you would have had children if you’d known you were autistic is the same thing I’ve been thinking about a lot. The messages that are out there are so overwhelmingly negative that I think I might have simply been too discouraged to try.
Your relationship with your mother reminds me a lot of my relationship with my daughter. We complement each other well and she instinctively knows when it’s helpful for her to step and provide some guidance. Like if we go into a restaurant that she’s familiar with and I’m not, she describe ahead of time some options she thinks I might like and she’ll even offer to order for both of us if it’s counter ordering and the kind of place where there are a lot of options that need to be described.
I can’t answer your question about whether a diagnosis could be used against you, but I do know that it’s happened in some cases to infringe on an autistic person’s parenting rights. About homeschooling, I don’t see why you’re being diagnosed would hinder your children’s progress since you’re on the spectrum whether you have that piece of paper or not. And really, a diagnosis can be a completely private thing if you choose.
Oh, I’m confident I can homeschool my boys. My real concern is one where the government interveins because I might be considered unfit. Sort of like the eugenics movement in California back in the 1930s where they sterilized thousands of disabled people so they couldn’t have children of their own. I don’t want a red flag on my children’s transcripts.
One thing I forgot to mention was that as a child I would have auditory hallucinations. I would “hear” people arguing at a really fast pace (like a record player playing too fast) and I would hear symphonies in stereo when no music was on (not like getting a song stuck in your head, more like tinitis where you get a ringing noise in your ear – it’s called musical hallucinosis). I asked my mom about it and she said it happens to her too. At that point I thought it was considered normal for everyone to be like that and I learned to cope because I thought it was normal. Only later as an adult did I figure out that it was rare. I never told anyone about it growing up because I didn’t think it was anything to talk about.
I think treating characteristic traits of autistic people as normal is much more helpful than making them feel handicapped. Sort of like being left-handed or color blind.
Ah, I wasn’t sure if I was reading that right. I totally understand your concerns about how an official diagnosis might endanger your parenting rights. I would assume that there would have be some sort of demonstrable neglect or evidence of harm to your children for the government to have any sort of case. And as an aside (in case anyone reading this is horrified by the forcible sterilization and glad that it’s history), disabled people, especially I/DD people are still occasionally forcibly sterilized today, often at the request of parents or guardians which makes me sad. We’ve come a long way from government-ordered sterilization, but clearly far enough.
I have occasional auditory hallucinations too and thought everyone did until I did some research about them and found otherwise. Mine are always human voices (benign things like breathing or someone saying my name) and very brief.
Do you happen to know of any blogs by autistic mothers who are homeschooling their kids? I’m sure there will be a wealth of sensory issues I’ll need to deal with and I prefer to ready myself for battle, as they say in books.
I know of some, though none of them writes exclusively about homeschooling (try using their search boxes, I know they’ve written at least a few posts each about homeschooling):
http://inneraspie.blogspot.com/ (home schools one of her autistic sons who is nonspeaking)
http://aspiewriter.com/ (homeschools her teen aspie son)
Also, Penelope Trunk has an education blog that until recently was a homeschooling blog (so maybe look at older posts first?), homeschools her kids and has AS (though being on the spectrum isn’t really an overt topic of her homeschooling blog): http://education.penelopetrunk.com/
If I can think of any more I’ll pass them along.
I have had similar fears about my diagnosis and it being used against me as a parent. So far it hasn’t, thankfully. I am aware that it can be though. I had to put my son in daycare because I was so burnt out and regressed quite a bit that I couldn’t cope. In order to afford daycare we had to apply for special Childcare benefit which we said my son was at risk of unintentional neglect – which at the time he was because I was not in a state to cope with full time parenting. My husband worked full time. My own mother was helping out as much as she could and not coping that well. So we applied for it to take the pressure off. I felt so much shame about that. The language was shaming. I kept hope up and focused on the fact that it was unintentional and that things would get better. They have finally improved. We no longer need the Childcare benefit. I have now got the disability pension which means we get discounted Childcare which is a relief as I am not in a place to work yet. It took 12 months of stuffing around to get disability. I do completely understand your fear. Having been through what I have it’s scary to think that it could be used against me but I am coping better and everyone in my life can see that so I think they (child protection) would have a hard time proving anything.
That does sound scary–having to say that your child is in danger simply to obtain services. I’m glad you’re doing better and you were able to navigate the system in a way that ultimately worked out well.
I think the approach you have taken to the issues in this article is very sensitive. 🙂 The one thing I’d say, as someone who hasn’t had children, is that I feel rather ambivalent about it – it was kind of a choice (I did wake up one day and decide that I was not going to do it) but kind of not a choice – in that, being undiagnosed and with no idea what was wrong with me, I never successfully managed to negotiate the landmine of dating and relationships and while I ended up in my late 30s in a relationship, sort of, which I just fell into, the man concerned first said he would like children with me and then later said he wouldn’t – he already had children. So I was stuck at nearly 40 trying to work out whether I should leave him and try to find someone else who would father a child (not really an option given how tricky I found these things, even if I had felt it was a fair thing to do), or try to have a child on my own (again difficult, since I was freelance at the time, no secure source of finance), or not have children at all. Ultimately I went for the latter, and I think all things considered it was the right decision for me at that time, but it’s partly down to circumstances that might have been different had I had an earlier diagnosis, because then I might have negotiated my own difficulties completely differently, and looked for a different kind of man. I couldn’t “live up” to this guy’s neurotypical expectations (in so far as I noticed them) and that’s partly why he drew back from the relationship. So, I wonder how many women on the spectrum who are undiagnosed end up childless because they can’t or don’t manage relationships in the “expected way”. In other words, there are advantages to knowing you are on the spectrum and it can confer more of a choice, even though, as you rightly point out, it can be a double-edged sword.
Thank you. That especially means a lot coming from readers who don’t have children. I didn’t want to seem to be throwing anyone under the bus.
I appreciate what you’re saying about it not being a conscious choice for you and more a product of life circumtances. Actually, I ended up being a mom in the same way. My daughter was unplanned but my husband and I decided that starting a family was the right choice so we went forward. I knew that there was no way I could parent more than one child, so stopping at one was more of a conscious decision.
musingsofanaspie, I have come across few bloggers who seem less likely to throw readers under the metaphorical bus 🙂 I think you always make “safe autistic spaces”, as you phrased it. It is very inclusive.
Thank you 🙂
cathybird-I really agree with all of the things that you say here. I actually did not want children until one day I woke up and realized that I was married to the right person with which to do it. I used to think that my personality would be annihilated by motherhood and I think that, had I become a mother under the wrong circumstances, that may have been true. I think that finding the right person was very important for me and under different circumstances motherhood would have been the wrong decision.
When my sibling was diagnosed ADHD I read every book that my Mum brought into the house on the subject and the books repeatedly said people with ADHD make great parents with the right support and I find that really interesting. I wonder if they will start saying that about autistic people someday.
Also, I met my husband when I was 19 so I never really had to do the dating thing, but I know that it would have been difficult for me to find someone had I not been lucky early on. I can’t tell when someone is flirting and apparently I seem flirty every time I get enthusiastic about something. Too many signals to interpret. Too much to misread. I met someone, but that really seems to boil down to the-luck-of-the-draw and weather or not we are fortunate to be thrown in with someone who is patient accepting and open-minded.
Proper diagnoses would have given me tools and understanding, but would the diagnoses itself have made me question my competence? Definitely a double-edged sword.
“When my sibling was diagnosed ADHD I read every book that my Mum brought into the house on the subject and the books repeatedly said people with ADHD make great parents with the right support and I find that really interesting. I wonder if they will start saying that about autistic people someday.”
Of course, now that we’re writing the books. 😉
thanks Beth 🙂 Yes, I haven’t been lucky with meeting the right fellow – if it is luck? I can never tell. Where I think this article has got it absolutely right is that either way a woman’s “path” should be honoured – if you have children, wonderful, if you don’t, wonderful, both ways are fine and deserving of respect.
I’ve always liked the idea that our *children* are not necessarily the flesh and blood beings that we bring into the world but also the creative energy, efforts, works, we bring, on whatever scale weather that’s an elegant line of code, a painting, a friendship, or a passion for pet rats. Are we all not nurturers on some level? Male or female?
Beth, yes I think we are all nurturers on some level and hopefully everyone brings their creative energy to bear on something, so, that’s a positive way of seeing it, and inclusive too. Maybe I can do more for the world without having children, who knows? … I’ve certainly got plenty of time and energy, and want to use them.
I think I am an awesome mom but very outside the box and it took me longer to find my groove. Pregnancy was VERY difficult. I felt like a Cow…everyone poking and prodding me and no privacy..it set me up for post partum depression for 6 years after my first two…and then my son (my second born) was acting out and I knew something was unique about him so at age four we pursued a diagnosis and heard Aspergers….I found out I had it shortly after….and then a year later we decided to add one more child and get the snip. A book that really helped me was (and don’t be too appalled by the title) Orgasmic Labour/birth…It is so outside the box that we tried to implement much of it and I had a better pregnancy and birth. I had the toughest time with my first two under age four but my third was very easy at all ages. Now they are all over six and it is delightful. I am finally not sleep deprived and my body is finally starting to recover. Perhaps Autistic women recover more slowly to? Did anyone else who had kids find they did not get their groove back at all until about 3- 5 years after birthing compared to the NT moms who were back to normal life in a few months? (that could have been my ppd )
I never wanted children. My first child was a “lets see if this works” and it did which sort of shocked us…but I am glad she did happen as I would have strongly stuck to my no children thoughts…and I am finding I am the best at motherhood…I can sense the needs of my children and I adore that they are all on the spectrum (granted we do not have a TON of physical disabilities with this but there are some and some days it is tough..) Plus, they keep me in my childlike state of innocence a bit easier.
I also understand why some women would not want children. It is invasive and without a lot of support (which I had and I still crumbled for a few years there…it was scary during that time) it would be infinitely more difficult.
I am kind of glad I didn’t know for my first two although knowing with my third gave me an ability to be different, relax and ignore the advice that did not work easier. (perhaps it is also that he was my third…the third is often very easy and mothers are already in their parenting groove.) Knowing is a double edged sword…
Lol…the “let’s see if this works” sounded wrong! We were three months into marriage and I didn’t want to take the pill one month…well It only took that…but she is delightful and my little nurturer. I freaked out that whole pregnancy ( I was 18 when I became pregnant). I was not the best mom to her the first three years due to depression and have apologized to her for being absent in some ways ( I explained PPD) She thinks I am the best mom ever…so that helps. I am just glad that they all are similar to my personality in many ways so we can always relate…I think I would have a tougher time having an NT child…It’s a relief that they are all on the spectrum but I have to admit, when they were under four they WERE more work than their NT counterparts (and still can be but I am better and more suited to that type of “more work” anyway.) and sometimes I was jealous that the other parents had it so easy and were complaining about problems I would love to have compared to ours…but we found our groove and now I would not want the NT issues…because I am good at the spectrum issues more so…does that make sense?
I found pregnancy difficult also. I felt like my body had been invaded and taken over. It was frustrating not being able to eat as I normally do. I had morning sickness till 18 weeks which wasn’t too bad, I guess. Oddly, I found the last trimester the easiest, it was like my body had finally gotten used to being pregnant and I felt somewhat normal.
My labour was long and intense. I am hyper-sensitive so felt contractions intensely early on. My midwife said I was in established labour for 10 hours but I chose to count my labour from when I started to have to really work through them which was 27 hours. I chose and intensely researched Homebirth as I did not feel safe or like the idea of going to hospital surrounded by strangers. My anxiety was way too high to cope with that thought. I knew fear affected how labour progressed or not from my research about birth. I had two amazing midwives attend my son’s birth. He was born at home in water with my husband in the pool, no problems. It was the most empowering thing I’ve ever done and really helped me grow in confidence as a person. Even though it was intense and hard work.
I was prepared to transfer to hospital if an emergency arose (I was booked in) but all was fine. I chose homebirth before I knew I was autistic. Looking back I can clearly see how autistic it was of me to control my birth as much as possible. Labour and birth scared me at first but I read widely to overcome that fear.
Did anyone else who had kids find they did not get their groove back at all until about 3- 5 years after birthing compared to the NT moms who were back to normal life in a few months?
Absolutely. The first couple of years were really tough and then slowly I seemed to get back into routines and feel more myself as my daughter became more of a “person”. 🙂 I was young when I became pregnant too and maybe that’s part of it? We still had some growing up of our own left to do with those first ones.
Yes, I am still getting my groove back. My son is 3. It has taken me till now to start to feel I am able to find my groove. We had other stuff going on that added to my stress. Moving interstate and then 3 more times after that while my son was a young baby & toddler was not the wisest choice. It definitely led to my burnout. I had to put him in daycare almost full time to recover though. I felt like a failure as a mother for awhile at first. It has been the best thing though. It’s given me space to recover. My son has had the best time learning and interacting with other children and his daycare leaders. He’s grown so much as a little person as a result. Now that he’s older and I’m coping better I am finally starting to enjoy motherhood. He’s so smart and I love watching him learn new things and I love teaching him about the world. We suspect he’s on the spectrum as he’s showing lots of traits so we are getting him assessed.
Kmarie- I found pregnancy hell. Felt like an alien incubator. All day morning sickness all forty weeks (couldn’t put on any extra weight). But as far as I was concerned labour was easy, (yay hypo-sensitivity to pain) and I don’t usually share this because I get weird reactions when I do, but other than the lactating thing, my body was back to a near pre-pregnancy state in about ten days. I think that it’s one of the reasons that I found early childhood a bit smoother than some mums do. I recover so, so quickly. Maybe it’s an unfair advantage but it’s one that I really appreciated.
I had a similarly fast physical recovery (and a relatively short labor for a first child). I literally went home from the two day hospital stay in my pre-maternity sweat pants. Being young probably gave me a huge advantage in that area.
I was on the young side too (23 and 27). It’s a total novelty to meet women who were mums younger than me in this day and age. 🙂
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Interesting, and very well-written, I would say.
Hm. I personally chose at age 10 or 11 that I would never have children – way before I was diagnosed – because we had neighbours who had children and constantly left them in a nanny’s care, and I saw what it did to the kids. At the time I had no idea of my executive dysfunction issues, nor my sensory issues; I simply knew I was an introvert who required a great deal of alone time, and figured that wouldn’t be fair to any children I might have, so decided not to have any.
Nowadays, I know that I wouldn’t have been able to tolerate caring for a child for very long anyway because of my sensory issues (I really can’t tolerate the sound of an excited child’s voice, because of the pitch), but it had nothing to do with the original decision. Although I did make up my mind way back then, I had also been willing to change my decision if I thought I developed the ability to get past my need for so much alone time, or if I felt my biological clock start ticking and ended up with a partner who could compensate for that. As it turns out, that never happened (partly because I’m mostly asexual, I think, and partly the aforementioned requirement for alone time), and I’m happy with that.
But I definitely agree that it should very much be up to the individual/couple to make the decision that they feel is right for them, and it’s no one’s business but theirs. I was convinced that I would be a bad parent, and that’s what my decision was based on. Other people under my same general circumstances might easily be very good parents, which means I have no right to tell them that they shouldn’t even try.
Just my two cents on the subject.
Thank you for sharing your two cents. 🙂 It’s fascinating for me to read everyone’s experiences and to see how varied we are in our approach.
This is a sensitive topic for me, so I’m sorry if I get on someone’s nerve.I hope it’s not offensive and understandable. There are some dangerous people that will want to stop people from having children just because the parents aren’t like the critics, and I take that very closely. When I was being abused by my mother, I thought I don’t want children, because my grandmother also abused her. Maybe it’s something that imprints on the mind…maybe it’s something that is taught, I feared, and still fear. I don’t lash to people like she used to, but I fear if one day I will become like her. It’s what makes me not want to have kids. Honestly, I don’t stop loving people because of our differences. But I fear having them because I don’t know if they would suffer on the hands of, critics. Haters. Dangerous people. I fear of how the reactions of others on our similarities will affect them. Now, I don’t know if my autism was caused by my genes, but even then, I feel they would forgive me for it. I hope that just like me they would understand that we cannot choose our lineage, that the wanted life, any that are given, are precious. With autism or not. Despite all odds against the born with something that is not chosen, that simply is, I survived, and…wanted them. My opinion is too, that we should have our choices respected, and it frustrates me to see the “supposed to be righteousness” on the neurotypical way of behaving, and the stigma on all the areas surrounding it.
It’s true, the world can be an awful place when you’re different. You’re not alone in expressing this fear. 😦
I just wanted to share this with you and see what you think about this comment. My fiance and his mom are going to counseling to seek understanding about my diagnosis (Autism 1/Aspergers) and the counselor lady told them that their was no way that I was Autistic because if I was, I wouldnt be as good of a mom as I am or a mother at all… I am still in shock with her ignorance and I do not know how I feel about her words. Just a bit… put off.
Personally I think it’s an ignorant thing to say and mostly just proves that the therapist knows very little about what autistic adults are like. Your fiance and his mom might benefit from also reading the experiences of actually autistic people rather than talking to someone who passing along outdated stereotypes.
Do you have any recommendations of stuff for them to read? I am taking them to see my therapist next month. She specializes in Autism. I feel sorry for anyone else that goes to her with similar needs of understanding. She is very out of the loop and completely in the wrong I think for sharing her opinion so bluntly. I agree it was very ignorant of her.
Good question. Are there specific aspects of being on the spectrum that you’d like them to understand? Everything that comes to mind feels overly specific as introductory material.
Sensory and Meltdowns. They seem confused when I try to explain why things bother me when I “over react” around them about something.
Got it. This is a great general post about meltdowns: http://www.snagglebox.com/article/what-are-meltdowns
And I’ve written a whole series about sensory stuff (linked from the top menu) but this post is probably the best place for someone to start if they don’t understand why sensory sensitivities happen or they think they’re not real: https://musingsofanaspie.com/2014/01/30/the-difference-between-a-sensory-sensitivity-and-disliking-something/
Hopefully these two will be a helpful starting point.
You are amazing! Thank you for your help. Hope you do well in your new home. I am finally moving as well into a home that I can have my own space away from everything. Getting this diagnosis has changed my life the last few months. Fewer meltdowns and now I understand what I need to keep leveled. I have never had my own space to wined down and be myself and my fiance and I feel it will help with the meltdowns to get away from the kids if I need and his music and such. I am very excited. I am making it into a sensory room because that is my biggest issue. I need to control the sensory stimuli in the environment. Its not a room, its actually going to be a walk in closet in the bathroom lol. Its better than nothing. Sorry I rambled. Take your time getting into your home, I will be excited to see your stuff when you are settled in!! You have helped me through so much of my “journey to autism” and I could not be more grateful.
A sensory room sounds like a dream come true, even if it is a big ol’ closet. 🙂 I think I’m going to make that a goal when we have a permanent home again (hopefully in a year or so). Good luck with your move as well. It’s fun to have new and more comfortable surroundings to look forward to.
Reading all of these comments is fantastic. After marrying another woman (first relationship, first marriage) in my mid-20s, I had a “should I parent” breakdown (in addition to “am I actually bi/gay,” “can I leave my country and proximity to my family of origin and thrive overseas,” and “can I live with an impulsive/hedonistic dominant personality and not feel small, boring, and stupid” breakdowns). I did a lot of reading, and came to the conclusion that I choose not to parent, even though part of me *wants* to parent. I find the idea of being an intimate part of someone else’s life as they grow, but I have a relationship to my likely-ASD father and my own ASD traits that involves a lot of strong self-loathing, resentment, and fear. Obviously, all things I’m at work to try to fix, with the help of therapy, but I suspect they’ll never go away completely. I don’t have enough faith in my emotional control to feel confident in knowing I could provide my (theoretical) children with support when they needed it and not frighten and confuse them with erratic emotional behavior. I frightened my family with erratic emotional behavior as a child, have frightened my family with self-harming behavior as an adult, am erratic, overly emotional, and unreliable at work, and was frightened as a child by my father’s erratic emotional behavior. As I’ve grown older, I’ve learned to look back and recognize the moments when he was reaching out (most of which I misunderstood at the time), but my experiences leave me painfully aware that a parent can think they’re doing a great job/checking off all the right boxes and still do harm. (Of course, the harm in my family could only have happened in the specific combination of behaviors exhibited by all my family members. It wasn’t ASD’s fault, but the fault of the combination of many traits and circumstances.) Most (if not all) of the people on my father’s side of the family are reclusive and struggle to find places in mainstream society; I feel confident that there’s a genetic aspect at work. I had a hard enough childhood, I don’t wish that on another person, and I fear snapping or withdrawing and hurting children. I snap and withdraw and hurt myself often enough, as it is.
I know those are all the things I’m not supposed to think, but they’re there, and they remain barriers to not just having children, but making friends and relating to my family of origin without guilt, shame, frustration, and overload. They’re even barriers to my feeling good about having pets (I often feel like I should leave my favorite cat with my mother, because they love each other and my cat would have more constant company and reliably care-oriented perceptive attention)! It’s all frustrating. And obviously today is one of my down days and not one of my up days 😉 I understand perfectly if you choose to block or delete this comment.
“I find the idea of being an intimate part of someone else’s life as they grow *fascinating*” even
I definitely won’t delete your comment. This must have been tough to write and I’m touched that you feel comfortable sharing here. I also don’t think we should judge what others are supposed to or not supposed to think. I did that to myself for a lot of years and it caused tremendous pain.
Everything you say about why you’ve chosen not to have children makes sense. It’s hard to think about caring for another being when it can be so hard for us to care for ourselves at times. I hope this doesn’t sound preachy or sanctimonious but I’ll say it against my better judgment because it might be helpful . . . I’m a bit older than you and a little further down the road of self-healing and if it helps at all, I can assure you that it is possible for this stuff to get better. It’s not easy, often it gets worse before it gets better, but it can happen. Still, I think you’re right about some things never going away–they’re so deeply rooted that the best we can hope for is to learn to live with them in a sort of uneasy detente.
I hope things feel better for you in the coming days. Hang in there.
I’m glad I didn’t offend or hurt you. The funny thing is, it’s not that tough to write. It’s tough to feel but writing helps me get a grasp on feelings (something I’ve seen others say in comments on your site). Once I share something like that, it becomes much easier to think about in new ways and to change or relate to in more comfortable ways.
You don’t sound preachy or sanctimonious at all 🙂 I very much appreciate hearing that it can improve! In fact, I do have faith that it can, now, which is a big change. Reading about ASD in a number of places has helped me understand my own feelings about myself and my family much better, and made it possible for me to think about me and them/us, rather than see them as–monolithic givens in my life, if that makes sense. It’s a great relief (and a great challenge) to have started thinking about myself and my family as complicated shades-of-grey people instead of black-or-white bad-or-good failure-or-success. My ability to hold that shades-of-gray understanding comes and goes, but to just understand that it’s out there as a possibility is a revelation and a great relief.
I’m a big fan of honesty and rarely find it offensive. 🙂
My ability to hold that shades-of-gray understanding comes and goes
I totally understand this and what you’re saying here. I never thought of it quite that way, so it was good to read your thoughts about it.
I did not enjoy being pregnant, but I was very calm and happy with my child. (I wrote about it here: http://www.onequartermama.ca/2013/09/pregnancy-and-autism-what-its-like.html) I did not get my own diagnosis until a good year after my son was diagnosed.
I was actually more concerned about possibly suffering from post-partum depression than anything else, because I had suffered from depression before. But the child itself was very much wanted and I am confident in my abilities. I do not know if I would have made a different decision had I had a diagnosis before. I always knew I wanted children.
Thank you for sharing the link to your pregnancy experience. My pregnancy was so long ago that I don’t have very detailed memories of how it might have been different from the norm, except that i had a lot of physical discomfort around sleeping because I’m a stomach sleeper and have so trouble sleeping well to begin with.
I’m curious whether your fears about post-partum depression were realized? In retrospect, I think I experienced it but was not aware of it at the time.
I am a 24 year old mom of a 2 year old son. I have relished the experience of the pregnancy process and his development up until this point. My desire for having children has been very intense since as early as I can remember, escalating at around the age of 14 when a cousin of mine was born. When I embarked on the decision to actually conceive a child, it was not a well-thought out endeavor. All I thought was I want a baby, and I want one now. My immaturity led me to make a decision that I was ill-equipped to fully comprehend the repercussions of and impact that this choice would have on my life. My adult/motherhood journey has been frought with misunderstandings, communication barriers, executive functions issues, domestic violence perpetrated on me by my son’s father (a NT “supposedly”) and maturity delays. I was horrified to discover that people on the spectrum (specifically in reference to Aspergers, as it was what I was researching) are about 6 years behind in emotional maturity and social development than their neuro-typical counterparts. I realize now just why I have struggled EVEN more than I possibly could’ve fathomed. Not only am I a female on the autism spectrum (with what I consider to be Asperger’s) but also when I had my son at not even 22, it was more like I had him at 15-16 years of age. Basically mentally, I am a teen mother. I struggle with time management, implementing structure in my day (without assistance from an outside source) & understanding verbal instruction (especially if not explicitly detailed.) Step by step tasks are hell for me, especially if not intellectually stimulating. I tend to lose track without the emotional maturity to get back on track. If I get interrupted in the middle of a task, good luck getting me to get back to the original task at hand, doing so upsets me exponentially as well. Understanding others people’s thoughts and actions are like trying to understand not only a foreign language but another species’ language. I only realize the damage I’ve done after the fact understanding always only comes in retrospect and after someone has clearly indicated to me through words do I “get it.” I can never anticipate whether something I do will offend someone or not though. Hell, hell and more hell is what it’s been. I just keep praying and holding out though that God can help me get through this life in one piece. I can’t check out now as I have a child depending on me but boy would I love to just give up, to be honest.
I’m sorry you’re having such a rough time. It’s hard being a mom at such a young age, especially when you’re struggling with other serious life crises. I hope you have or are able to find some support as your son grows older. It can be incredibly hard to raise a child on your own. Is there anyone in your family, church or community who can help you seek out support and parenting resources? Your son needs you and it’s important to take care of yourself as well as him.
Also, the concept of mental age is a bit of a fallacy. While we do struggle with many things, that doesn’t necessarily mean we have the mind of a younger person. It’s not like one day we’ll magically catch up simply because we’re older and I think that’s important to keep in mind. I spent years waiting to “grow up” and when I got to 40 and it hadn’t happened, I realized that something else must be going on. I’m not trying to diminish your difficulties or anything. I was the mother of a 5 year old at your age and I know how incredibly hard it is.