Autistic pregnancy: how I coped
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- เผยแพร่เมื่อ 7 ต.ค. 2024
- Autistic pregnancy: Being pregnant and autistic comes with a unique set of struggles, yet it seems like there is almost no information out there on how to deal with it. (There is also very little information out there on autism in women and girls which I hope to change with this channel)
In this video I share my autistic pregnancy journey, talking about the dreaded first trimester to pain relief, and dealing with the social side of pregnancy and the communication issues that arise with it.
Whether it's for you, your spouse or a family member, I hope you enjoy this video!
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I loved the video, I think you're helping a lot of people, not only autistic but also neurotypical people
Thank you, I hope that what I'm doing is benefiting someone at least!
My friend is autistic and she’s neurotypical
I don't think I ever want to be pregnant. The thought alone gives me the same anxious feelings as claustrophobia and bodydysmorphia. And having to care for an unwanted child is one of my biggest fears. I'm a very paranoid 23 year old virgin lol.
Edit: I really relate to the part about pain tho. I once had a 3rd degree burn on my hand and the skin was literally peeling off and I just sat there with a smile and freaked everyone out. The pain WAS bad, but not a 10, a 10 is getting eaten by a shark or something, I imagine??
If you don't want to be pregnant you don't have to be! It's not being paranoid :) I actually laughed out loud at "a 10 is getting eaten by a shark or something" - that's exactly the kind of thoughts I have about the scale!
Ann Jay I’ve chosen not to have my own children made that decision back when I was diagnosed at 23 now 38.
@@Dancestar1981 do you regret it sometimes?
Ann Jay occasionally as I’ve gotten older but I’ve never been in a serious relationship where it’s been a problem I know that if the chance came in a stable relationship I can always adopt. I have a big generous heart and a child doesn’t need to be related by blood for you to love them
@Purple Citrine " feeling close to dying"
yeah, pain can do this to you. Pawlow's second big discovery was: After being subject to a flooding (of the place he held them), his dogs basically wanted to die. Read: Pavlow was the real doscoverer of trauma.
When I got to hospital the midwife said I looked quite comfortable... I was contracting strongly about every minute. They didn't really believe I was in labour until they examined me.
Thank you for interrupting the feed of videos about “preventing Autism” 🤦🏼♀️ when I was searching for videos about the experiences from other Autistic women during pregnancy.
I’m Autistic and trying to learn from other Autistic women while I decide whether I want to have kids, so it’s really helpful hearing about your experience.
You look very fertile ,you want my baby
Thank you for your honesty. I also did the "baby is a parasite" thing, and had real challenges around feeling like there was an alien inside me. I went on to have another, however, and now have two wonderful girls, both who are very like me :)
Love that! I kind of want my kids to be Autistic as well because I think we’d have a stronger connection than if they were NT. Plus I could provide them with information and support that I didn’t have as a kid, so I hope they could grow up with confidence and self-love 🩷
I actually have a fear of having a NT child that grows up avoiding and resenting me for my Autistic quirks 😬 Thankfully, judging from my family, there’s a pretty high likelihood that my kid would be Autistic 😂
That horrible experience of seeing your belly moving as if an alien is inside….. I remember so well the disgust and feeling that the world was gaslighting when talking about it as something cute
Peopleling... I'm going to take this word and define it.
"Peopleling" -- verb
To People: the act of interacting among the general public, either in large or small venues, while attempting to imitate neurotypical behavior for the purposes of either attempting social interaction, or enduring social interaction.
I hate the pain scale thing!
They don't even give us a list of parameters for each number on the scale! It is truly ridiculous!
I was so happy the last time I went to the hospital! They had a great, descriptive explanation (complete with humorous descriptions as well) as to which number on the scale meant what. I should have taken a picture.
Oh my God. Of all the things I know aren't just me, I really thought this might be just me. The "Wong-Baker" pain scale is equally confusing and something I overthink EVERY SINGLE TIME.
@@EagerOnlooker 2
as a medical student i learned the scale with a description like 0 is nothing, 5 is really uncomfortable, 10 is strongest pain imaginable. most people in the hospital or other docotrs/ medical staff will be busy and so used to aks about the scale they'll miss explaining it to every singe patient. i find that is a problem, cause you don't know, if the patient understood. since the saced only works in comparison to other answers from the same patient it doesn't matter that much though.
there's no problem in asking for an explanation, if one isn't given to you by default.
Totally get your comment " I don't understand pain scale " & also the more pain I am in the less I show on my face !!!
I'm knee deep in a research binge which has led me to think I may be autistic, how I haven't noticed sooner I just don't understand as my 7yo son is diagnosed and I've spent years researching my oldest's obvious aspie traits.
With my first pregnancy I spent the whole 9 months nerding up on every possible angle of baby raising. When I went into labour the pain wasn't a problem at all. I was 5cm by the time I walked to the hospital and started explaining lotus births to midwives who hadn't heard of it (this is NHS staff in 2005). The baby arrived and my first words were "I'd do that again for fun". Pregnancy birth and breastfeeding have been special interests of mine ever since the test came up positive, and I'm desperately trying to study to become a doula but this huge anxious wall builds up between me and actually sitting and studying (I can drop in and out of the course when I like but I still can't seem to do it), but I'm determined to help others get the birth they want as so much intervention is unnecessary and yet routinely pushed. I'm gonna shut up before this waffle gets too long but yeah, I'd definitely be interested in offering neuro divergent doula support so thanks for pointing out a niche I can actually work with 😁😁😁
Same to the top part. Didn't think I was autistic going into it (was pretty certain, actually) and now we're going to look into getting me evaluated for autism/ADHD XD
Woman, I am so jealous of you.
I'm autistic and I've been pregnant twice. I never want to be pregnant again 😂😂 I also have some co morbids. I don't understand the damn pain scales neither and I wish doctors would stop asking me 😂😂 I need a shirt that says don't touch me too
I need a "Don't Touch Me" shirt for my everyday life. Maybe a pin/ button that reads it.
@@EagerOnlooker ME too!!!🤣❎😷🚫✋
Me bouncing on a ball rubbing my belly during a contraction - "it's about a 6/10 I think"
I was 8cm dilated 😅
My pregnancy with twins was very difficult. I also knew my boys were inside, but I didn’t believe they were there. I was resting and relaxing a lot, but I didn’t speak to them much. After the C-section I was happy to see them, but I kind of didn’t believe they were mine. I did everything for them, but I did not feel normal feeling of love. I don’t think I was depressed, because I felt ok. Maybe just the tiredness and stress caused me to block my feelings. Now all is fine. They are the biggest happiness in my life ❤️❤️
the colours in this video are so satisfying! :)
(and the info is great too. I've found it very hard to find resources about pregnancy in autistic women)
Oh no, so funny about the pain scale thing. And all the internal questions that come with it. I never linked it to autism, I honnestly thought I was just being really philosophical. 🤦♀️ I have that problem so often. For example at the kinesist, when she asks me questions about describing pain or sensations in the body...I just get blocked and do not know how to answer them. I never understood why! Thank uuuu🙏🙏. Also doing an eyetest at the optician....WHAT is seeing something 'clearly'? Depending on how much I focus?Depends on how tired I am...so many conditions come on. Those tests take ages with me and I can see I'm driving the other person crazy😬 But I don't manage to answer those questions without nuance.
Thank you so much for this video, I was pregnant eight years ago now and could never understand how confused and depressed I felt. It was almost like every social thing I had learned vanished and I went back to being an awkward child who couldn't get anything right. I lost friends, was made redundant from my job, I could barely function being in society, crowded places made me sick, anyone having coffee or smoking made me sick, I was literally throwing up in public on a regular basis, even wearing certain materials or someone banging into me would make me sick. I mean I have never been diagnosed with autism but after watching videos I am starting to wonder, also with having some of my family members recently diagnosed.
I recommend joining some women-only Facebook groups. You don't have to be officially diagnosed to join (they understand the barriers to diagnosis in females), and it will answer so many questions for you in a way books etc can't. The group I like best is Aspergers & Autism Safe Room: A Safe Haven For Women On The Spectrum
@@frolickinglions `Thank you, that is a good idea and something I'd not thought of.
I so appreciate this video. I've been weighing the pros and cons of starting a fam. I cannot stand surprises and some of the things you mentioned sounded like things that would bother me and require procedural planning.
I feel safety in planning and getting as prepared as possible since mom's mental health is so important.
Just started watching your video it is nice to have run into someone else with a later diagnosis.
I was diagnosed with autism at age 42. I had a miserable pregnancy with diagnosed prenatal depression. I too never did well with any hormonal changes. Love that you share this forum! And love your sense of humor as well!
I am a neurodiverse woman and I am a birth and postpartum doula!I am actually trying to see how I might be able to reach women like myself and you who would like to have a doula but worry about the doula, almost making things worse, because of not knowing how to be sensitive to my neurodiverse needs. ( I had five kids and never could find a doula I was personally comfortable with) If you have any advice about how to put myself in front of fellow mothers with Autism I would love to know! I am in the Austin Texas area.
Following this because I hope to also hear some advice! I am also a neurodiverse woman who is a birth doula and soon to be student midwife however I have yet to be pregnant.
@@danielledoesshit I am a (yet to be diagnosed) neurodiverse woman who is about to start my doula training! I am a looking into nursing courses to become a midwife! I would love to be able to serve neurodiverse women like myself!
Finding out about doulas like you would've been life changing for me, thank you for doing what you do. Also any cool tid bits of advice would be thrilling, I'm just starting my search for resources and it's a clumsy start so far I'll admit.
Contact associations of (1) autistic people; (2) gifted people, and (3) high sensitive people. The three of them have sensorial issues so your help will be welcome
'I got acne and cried a lot' is the most relatable thing i have ever heard
Thank you for posting - my experiences with medical care, and care in general is very much reflected in your narrative. Being extra sensitive in general, I grew up being told to stop complaining quite a bit, making the identification of things to get help with tough - particularly for fear of the sort of gas lighting you speak about. Again, thank you for sharing your experience.
Oh, the painscale is so relatable!
Yes! I so relate to everything you've said. I was in my early 20's when I had my kids, undiagnosed and still dealing with selective mutism that had been such a challenge when I was a teenager. Pregnancy was very difficult and had I known that I was autistic, I would have waited a lot longer to have my kids and would have asked for so much support...Ahhhhhh, hindsight 😶
Unrelated, but we share the same name (Katie Lynn - minexs spelled different, obviously, though 😊)
I'll be honest, I had a birth plan in place and was very clear that I wanted it followed as closely as possible given family history of heavy blood loss during delivery. It lasted until I went into emergency c-section surgery and everyone (doctors/nurses/etc) ignored it completely. During the whole pregnancy, my doctor kept dismissing my fears that something could happen (I'd had a miscarriage previously and it'd scared me so much that it might happen again). Even after the birth, I was still in pain from the c-section scar and the doctor kept acting offended, like I was accusing him of malpractice. I was like, "No, I'm in pain. I shouldn't be in pain from what you've told me. Why am I still in pain (6 months after surgery)
As I've only recently come to question whether I am autistic or not (I have appointments in June for official testing), but I've definitely identified with a lot of the content in your videos, more so this one.
Everything was heightened. My neighbors were always too loud for me, even if they were whispering, to the point where we had to move just so I could sleep. Smells were the worst, cause we were living right by fast food places and it was summer time. I had to keep the windows closed all the time and have all the fans on to keep cool cause the feeling of sweat on the skin makes me feel sick.
Honestly, if my husband wasn't as amazing as he was, I'd have gone insane. He was truly my rock through it all. Even after I told him about my therapist's suspicions about me being autistic and get tested for it, he was like "That doesn't change who you are. You're still you, no matter the diagnosis. I just want you to be happy with you, that's all that matters to me. If you are, we can work with it and at least now we'll know."
I laughed when you said “I thought about a baby being a parasite and that’s how it feels, ofc no one appreciates that kind of humor”
I did the same and referred to the baby as a parasite because by definition it is. And yeah some people did not appreciate my sense of humor that was meant to bring myself comfort.
You are right, it is
Awesome video! I’m actually afraid of being pregnant. I know that sounds silly LOL. One of the things that grosses me out the most is being able to feel the baby kicking and moving inside of me. I was wondering how you handle that? Did you find it gross?
It actually wasn't that bad, and I had a very active foetus! I enjoyed it as a weird sci-fi sort of state. It was a pain being kicked a lot, but it didn't feel gross.
@@YoSamdySam That is a relief to hear. Being in my 10th week the quickening is approaching and freaks me out.
As someone who tends to be rather anxious I found the kicking very reassuring, since every kick was a sign of the little alien being alive and well. :)
❤️❤️❤️ doula for autistic mothers!!! And I really appreciate your sharing your experiences with pregnancy, birth and early motherhood. I’m very new to the possibility of my own ASD diagnosis, and this is helping me understand my own experiences more, even 16 years after my son was born.
You are just describing my 9 pregnancies: from implantation I was as sick as you are describing. My husband pointed out every time correctly I was pregnant because of how obvious it was. My way to cope with that was to make deliveries happen week 37. In my first delivery, I didn’t have epidural but was smiling because the 9 months of misery were finishing. I am gifted with high sensitivity, so the sensorial aspects you described are basically the same. Very glad to hear about your experience, thank you!
Thank you so much for sharing! I've watched videos of "normal" pregnancy telling me things like the total opposite to what you said, making me feel gaslight, because I knew my body before pregnancy. I am generally tired and have fatigue problems. Now they are worse. Giving me the advice to exercise more or just force myself eating ends up me falling unconscious and vomiting the little bit that I can hold in.💀 Thanks this video you took away a bit of my anxiety which helped me to ease up and don't feel as nausea and stressed. Wish you all the best and keep up the spiret❤
My 12 year old was identified as possibly having an ASD last week and that has sent me down a steep, steep rabbit hole where I am flipping through my past, my identity, everything as the realisation that I am probably autistic takes hold. I am 51, had psychiatrists see me as a child, but with tests showing an IQ of 142 and self-implementing many of the coping strategies you took, I ended up muddling through.
I am SO grateful and glad to be following your channel and learning from your journey as there is such a reassuring “mesh” between my experiences and yours. And you have given me an explanation as to what happened during childbirth, where, YES, just as you suspected, my pain was not being seen and even dismissed when I vocalised it. I used gas only and was about to freak out wondering how I would ever cope when I explained that it was unbearable but was told that I still had a long way to go. And then the midwife took stock of what was actually happening (she had even missed that I had broken water) and began to see what was real and not what she was assuming to be real. At that point she finally realised I was crowning. The withdrawal of the gaslighting (I was at the peak of pain and not coming into it) made everything OK. I knew my limit and I was there, that in itself was a relief. And then there were staff at the maternity ward who kept insisting I’d be back, it was clear to me I was in the one and done camp. Anyway, your intuition about pain being denied and invisible? Entirely correct!
Love this so much! Thank you for sharing! I don't have kids yet but have been in hospital many times and can relate SO much to needing things explained and communicating pain. I would LOVE to hear you talk about how we deal with pain that is different to neurotypicals
I'd love to do a proper video on autistic pain but I want to make it really well researched first. Definitely on my list.
Literally everything you said about pain just... Yes
I can completely relate to your first trimester! I am currently 13 weeks pregnant with my first and the food aversions and fatigue have been the hardest thing for me. I developed ARFID before pregnancy because of my sensory issues and food allergies (especially celiacs) and then the constant nausea made it even worse so it has been so hard for me to eat anything 🤢😭🤮 I have been throwing up a lot which has been really tough. I’m hoping it goes away soon now that I am going into my second trimester!
I'm glad this video exists. I just wanted to check that other people feel/have felt the same way about it that I do. The wanting a home birth because I just don't want anyone near me, and feeling like I just can't do people is very much what I'm feeling right now (31 weeks and recently diagnosed with ADHD, pretty sure autistic too)
Thank you for this video! I have not been diagnosed with ASD, but I feel I can relate on so many levels. I'm 31 weeks at the moment, and my body is completely overstimulated so often lately. I'll get restless leg syndrome really badly, the baby will be moving, and my partner wants to cuddle, and I feel like screaming. I love getting to be a mom, and I love my partner and his love, but I feel like I'm going to explode sometimes from it all just being too much physically. Thank you for being so open about your experiences, and pregnancy not being all sunshine and roses.
Anesthesia does the same thing to me. I got a root canal and could feel everything. It didnt hurt but it freaked me out. The doctor who did it wasn't my usual dentist and apparently didn't know about my diagnosis. My regular dentist came by to help and tried to comfort me, but the surgery person just scoffed. She was like "theres no way you can feel anything. We even gave you an extra shot." My whole face was tingling and setting off sensory panic. I can't imagine the way a C section would go.
Omg! Same for me. I have a cavity When my dentist gave me a shot of anesthesia and I still felt pain, Se said "theres no way you can feel anything".
I didn’t feel any reservations about “hiding it” but I felt crap and needed more support and understanding early on so I needed to tell the people I was living with very early on.
I have decided that I never want to go through pregnancy or childbirth. I've felt this way for quite a long time, but I just recently made the conscious decision to never do it. And since I received my results that I am autistic just last week, I am now even more convinced that pregnancy and childbirth are not for me. I am almost 100% certain it will be nothing but traumatizing for me, or at least *mostly* traumatizing. I simply can't do it. I have to do what is best for my mental and physical health, and I believe avoiding it entirely is what is best for me.
I’m in my first trimester and miserable. Thanks for making this.
You are so right about the epidural. I could still feel my contractions and other sensations...like the burst, scoop, and stitching. I must've reacted to something in the anesthetic because it impaired my ability to function for months after the birth--which is hard when you have a new baby. I also got a full body rash that my doctor couldn't explain. I cannot wait for your neurodiverse pain video.
i didn’t have a c-section but every single experience you had is spot on with my own.
Thank you so much for this video. Was pursuing autism diagnosis around the time I got pregnant. I cried multiple times during this video because I'm finishing up m first trimester now and the things you said resonated in a way that makes me feel so much better about how I'm feeling. And even the negatives you describe for the future and birth gives me more hope of having a better understanding of my needs and what I can do to make sure I'm taken care of. So truly thank you so much.
When you were talking about all those classes you take while your pregnant, and not knowing what to say and not relating to the others, I felt that so hard... I still find it slightly awkward when I am with groups of parents. I often feel pretty separate and alien-like. O-O
I know this video is old, but I just wanted to comment and thank you for making it. It's so nice to hear someone else went through something similar to me! The normal rhetoric around pregnancy has made my own experience rather shocking - I had no idea it could be this bad. I am autistic and 6 months pregnant and am having an AWFUL time. Probably made worse by the fact that I have Ehlers-Danlos Syndrome too. I hope I am like you and have an easier experience postpartum! All the best, hope you are doing well 💜
I'm sorry you had a rough time but thank you for sharing your story. Man I've been looking through a lot of your videos, and I was thinking "maybe I'm autistic," but this video really hit home. I've had lots of issues with hospitals and pain issues, and I've been hyper-fixating about researching pregnancy to try and alleviate discomfort in the future because I feel in so much discomfort due to my regular hormones and pain condition. Pain medication really doesn't work well for me and I even have allergies to some major pain medication. The fact that this all may be related to sensory issues and autism makes me feel a lot better.
I had comparatively “easy” pregnancies and births. It was the ppd for me. I also had a doula for my first, and home births for the other two. I LOVED the home births. If I could have gotten it I’d really have liked to do a water birth, but the pool rental was more than we could afford. I was very worried about tearing with #2 as I did with my first so I did a lot of research/exercises/relaxation practice etc and that helped a lot.
I had 2 miscarriages and this is my third pregnancy, so I get it. I'm so excited and anxious! I have Autism, cPTSD, and fibromyalgia.
Pregnancy was the worse part of my life. I love my baby, but I would never want to go through that again.
Thank you.
Great that you are also bringing up the important issue of lack of understanding in the medical field, for the simple fact that not all bodies react the same way to medication. It is dangerous to overlook this simple fact, even mentioned in every leaflet that comes with medicine.
I don't show show much distress either, when in pain, especially if I have to talk when in pain. When my son was little, he screamed as if ripped apart if he got food on his face, or if a sock was wrong. But seemed outwardly unaffected if he hurt his manly parts. This is a huge thing for everyone working with persons on the autism spectrum, to understand. I underline this as a former human right professional. I believe many persons on the autism spectrum may suffer inhumane amount of pain during different medical procedures, due to lack of understanding and research in this field. This is a serious, human right issue. This also brings to mind "therapies" as ABA, but that is somewhere else to be discussed...
I feel very very anxious every slight change or twinge in my body I’m panicking , I’m 5 weeks 3 days . Thank you for making this because being autistic and pregnant is another level
I related to this so much. I've been looking into autism for my daughter and then realized I think I maybe have it. Like everything you said was so me during pregnancy and in life. I've always had a few "quirks" socially, etc, but parenting just like blew the cap off the volcano and I struggle a lot functioning in life. Pregnancy was traumatic and so uncomfortable. I had developed POTS (postural orthostatic tachycardia syndrome) during my pregnancy which made it all even worse.
This is so helpful! Thank you!
I already made a short list with bullet points to give health professionals from now on ❤️
I think the second time is easier because you know how things are going to roll. My first one was similar to yours in that I was somewhat detached, sick a lot, and scared. With the second, it was a whole new ball game. Both were C-sections, the first had to be one, the second was my choice.
SIde note, my daughter is also autistic and is now 20 years old and swears she does not want to be pregnant because it would be like a parasite, she doesn't want to think of it absorbing her energy AND she doesn't want to think of it moving around in there. So it was interesting that you mentioned the parasite part. How did you feel about the baby kicking and moving towards the end, did it freak you out?
Oh wow... this took me back to all of my pregnancies. (We have 4 adult children) I can relate to everything you are saying. ❤
This video was amazing. Yes you could view what you said as scary. I'd prefer honest, transparency versus sugar coated fluff. Even before I knew I was autistic being pregnant scared me because of how overwhelming everyday life is before you add in the unknown factors that hormone changes and growing a human will make. This was really reassuring. That even if it's as bad as my brain may catastrophise, it's survivable and thriveable in a unique way that for neurotypical people may experience. Thank you. 🌻
Omg yes. Peopling is so difficult, English is overrated, the 1-10 pain scale is such crap and has taken me 20 years to be able to even try to use it. I'm glad you removed those terrible people from your life, I know how that can be. Congrats on your baby, and your ideas surrounding doing it again or finding someone who can properly advocate for you are really great ideas. 💜💜💜
The pain thing - I can so relate...
I love your video! Nailed the topic yet again!
Thank you!
I am just now beginning my mental health journey. Pregnancy #3 has been the hardest experience of my life at the moment… which has opened up the understanding that I am Autistic. A year ago I had high suspicions of ADHD and began approaching life differently with that crazy spinning life upside down realization… But with my first 2 pregnancies, though they were much easier in comparison to this one, I totally relate to the moment after giving birth and on to postpartum as such a relief! I was the happiest and most joyful I had ever been in my life, so much so that I got pregnant with baby #2 when my first born was only 7 months old because life was just so amazing and having another baby just made so much since 😅 Then I took a 3-4 year break raising my boys until I was ready to try again. And man this pregnancy has kicked me in the butt! But I’m grateful to understand why I have mentally and physically been so low ontop of what should be a season of joy. And hopefully from your experience that I will experience relief when baby is born and have a joyful postpartum again. I was a bit worried that this is just how I will feel for the rest of my life. I have forgotten what good times felt like. And now I know the limitations I need to set to get better mentally and be okay removing situations that I need to mask and use more energy. Anyways, thank you for sharing! I have hope at the end of the tunnel! I’m excited to want to eat again for sure! (Currently 28 weeks).
Re: Pain on a scale of 1-10
I came across a chart that describes what each of the 10 levels of pain are like, based on how they affect your life. It’s mush easier to answer that question with this context. It’s Google-able, but as a quick summary:
Pain levels 1-5 range from pain that is barely noticeable, to pain that you can’t ignore. Pain 6-10 ranges from pain that interferes with your ability to focus, to pain that knocks you unconscious (which many people never experience).
Holy crap! I wish I would have found this video sooner. I have carried around so much guilt around my pregnancy/birth experience (and breast feeding too but that's another comment for another day). I have not been diagnosed with austism or anything but I still related to so much of what you discussed in this video. I HATED being pregnant because I was not at all in charge of my body. I couldn't just say when enough was enough and quit. (I intentionally got pregnant and really wanted my baby so I don't mean anything around women's rights.) I was so scared of child birth. I didn't connect to my baby like at all while pregnant. The actual birthing process was a awful because you really have no control and no one educates you much on what the ins and outs of the process would be and I need those details, dammit! I pushed for soooo long and the nurse wanted me to touch my son's head to like motivate me and I kept saying no and my mom and the nurse both were poorly masking their concern/disapproval so I finally just did.... That wasn't for me that was so the people who were supposed to be there for me were comfortable.
My son is not quite 2 yet and he is the light of my life. So I am grateful to see another experience more like my own after being surrounded by so many "pregnancy is magical" women.
That's my extremely long winded way of saying thanks for making this 💜 officially subscribing after just happening upon your channel today.
One of my 3 major lifelong special interests is parenthood, from ttc to child development, which majorly helped getting through that first trimester displeasure, because it felt like the low in exercise where you're exhausted but you catch the motivation for your health/ body goals and get really into it again. I love being pregnant, I love feeling this squirmy alien, and Im so excited to meet this child outside the womb and snuggle him endlessly. Im very glad you made this video, I keep seeing annoyingly ableist things in my pregnancy resources (i.e. you don't want to risk the baby getting autism from excessive ultrasounds!!!) so this is refreshing. Surprise, we reproduce. That's how we spread the autism pandemic 🤪😂😂
I can relate to this video so much. Had my first kid three weeks ago and had the most horrific birth. Had to get induced for high blood pressure which was a shock. I contemplated running away to not have to go through with it. The foley balloon to get induced was excruciating. I asked for pain relief but they wouldnt give me any, I even explain I am autistic and am highly sensitive to pain. Then had three failed epidurals. 33 hour labour, episodomy and forcep delivery. I regret not pushing for pain relief when getting induced, I wish I just left and said ill come back when the gas is available. I know my body so well and didnt advocate for myself which is a massive regret. Also it was so hard being there for so long, had a revolving door of midwives and health professionals so had to keep trying to explain my needs. I gave up in the end i was so exhausted. I never want to get pregnant again but would love another kid :(
My birth was a semi-nightmare. Sooo worth it, though. Love my baby girl! And I also was the same way about pain. I turn inward. No one knows or believes how much pain I'm actually going through until it's unbearable, and then it takes a while for the meds to kick in XD And also the parasite thing.
I know it was messy, but this story was actually reassuring to me. Mostly, that was because of the “if this autistic woman had a baby, then you can” effect. Also, I may steal your hospital document idea in the future.
I am glad that you survived this experience. You do help a lot of people, myself included. Thank you ♥ I deal with pain same way. I sit very still breathing shallow. And then there are clueless neurotypicals running around me in circles, poking at me, and asking incessantly "Are you OK? Do you need help?" If I do not answer, isn't it the clearest indicator that I do not wish to communicate??? :))) I hate unwanted touching, too. It should be made a crime to touch pregnant women without their consent. I usually just turn to them and ask "Would you like me to hurt you?.." but there has got to be a better way :) BTW, you were 100% correct. Babies ARE parasites living off a living host and then bursting out of it. That is what most horror movies are based off of, I think - an exaggerated depiction of birth :)
I was the same in my first trimester with food. And smells. It was horrible. I lost 20 lbs.
What you would have put in your bullet list is the same for me. Especially pain. I do not show it, I internalize it.
Thanks for this video! I feel validated years later!
Nice to hear that I’m not the only one with a dark sense of humor 😆
Lana Grant is apparently a trained doula specializing in assisting autistic pregnant people. She also wrote a book called “From Here To Maternity: pregnancy and motherhood on the Autism Spectrum”, which reviews say is good but mostly recounts her personal experience.
I was hoping you would touch on MEDICATIONS. Thanks again for the great info & love your channel.
Yes!! We sense and deal with pain completely differently. I’m very resistant to all forms of anesthesia and have woken up twice under twilight sleep which was super distressing.
obvs I never have or will get pregnant but I FEEL THE 1-10 THING!!!!
I’d NEVER do it again. I’d rip out my uterus myself first. I’d literally rather die. I found becoming a mom one of the most regrettable decisions of my life. I had no idea I was autistic. I caught baby rabies at 29 after being averse to the idea of motherhood my whole life up till then. Got pregnant first try. Wasn’t able to bond in any way with my kid till he was @5-6, despite doing everything technically right including the miserable breastfeeding for a year thing. My ex is raising my kid. I was such a disaster at motherhood my husband asked me to leave, especially after finding out that I’m also gay(he stole my journal in desperation). He’s an engineer and said that was a fatal flaw. Whole project needed scrapped. I was glad to be out of what felt like a hopeless nightmare. I thought about killing myself everyday for all those years. Only thing that stopped me was knowing the horrible generational trauma caused after my paternal great grandfather blew his brains out. I didn’t want to do that to my kid. I love my kid. He’s 12 now and I feel like I have completely failed him. We find each other completely frustrating. I relate to everything in this video and all I have to say is that the whole experience has been my biggest heart break. I hope I can be something more positive in his life in the future. As of now I am nothing but an embarrassment to him. He pretends his stepmom is his real mom. I send him presents every month just to get a text out of him to know he’s still doing okay.
Just do your best to be in his life. Get a support group to help you through this (like people with autism that meet once a week, or a therapist, friends, etc). All children have a period where they are embarrassed of their parents. Don’t let that get in the way of you being a mother. Just be in his life, do your best. I would give anything to have my bio dad try as much as you. Keep trying, but be very patient with results. It’ll be a while.
Baby rabies, lol. Never heard that before 🤓 but yeah, I'd never do it again, either.
I've been feeling good while I was 3 times pregnant.
Thanku for this Sam. My wee lassy is now 12. My pregnancy was hellish too. I had morning (more like all the bloody time) sickness from 5 weeks to almost 6 months. I lost 1 and a half stone too. I could only eat crackerbread n cheese spread. In the last three months I could manage to eat more n keep it down but it was still limited. Anytime I tried pizza I'd bring it back up which was a nightmare as I love pizza. It was so worth it in the end but a horrible experience. And I feel pain very easily so I was petrified of childbirth too.
Omg I so relate to this. Brilliant video. I was so mute at ante natal etc and could not relate to the other mums. Yes pain makes me not react too, was 5 cm dilated when admitted to hospital and didn’t appear in much pain. When I was in lots of pain later I could t have morphine, reacted to it, being sick, anti sickness drug made me vomit until giving birth. Plus I have had fractures, spinal injury and surprised the A&E Dept each time cand I couldn’t ever answer 1-10 scale either. My first born child diagnosed with Aspergers/ASD later on. I was told as a child I had autism but not discussed fully with me. It was a stigma in the 70’s. I don’t process info immediately either. My husband would advocate for me too. I had a traumatic birth first child due to mis management but had twins in my second pregnancy and emergency c section and better managed. X
Thank you for this video. I think I will need to make some lifestyle changes to accommodate future pregnancy. I appreciate your insights.
Love this video. I am also autistic as a 15 year old and my symptoms are being sensitive to loud noises, light, touch and taste sometimes smell too (i.e, I don't like the smell or the taste of garlic being topped on pasta sauce, it makes me want to throw up). I was diagnosed a long time ago probably about 6 or 7 years old. Years before that, I had problems as a child at 2 years old and when I started nursery in 2008. Sometimes I get angry if anyone in high school picks on me in class or things are not working the way they should. There is definitely no cure for autism but can be improved like what is happening to me so far nowadays. 😊
Thank you for this and all the other videos.
I relate to a lot of the things you said. I've been pregnant 6 times and have lost 3 of those pregnancies, so I have 3 children. I had my first son naturally and it was so traumatic because I was in Guatemala and everything was in Spanish. My 2 daughters were born via C-section and the recovery for me was just so hard and painful. I also had horrible postpartum depression with all of them. That was the hardest part for me. Not having any kind of support through PPD and having 2 kids and a newborn to care for alone while recovering from major surgery.
I relate so much to a lot of the things you're bringing up, I had SO many Aha-moments within just a few minutes of listening to this video! Like the facial expressions/body language not reflecting the actual intensity of the pain I'm in, or dealing with pain by being very still and silent. I'm trans and went through several pregnancies and I also relate to the feeling of baby being a parasite, but I was more or less prepared for this feeling as a woman in my family had similar experiences - she called it feeling like the baby was an "alien" though ^^ guess I come from a family with a darker sense of humor. And the pain scale thing... gosh, this has always been SO unhelpful to me for the exact reasons you're mentioning! Thank you so much for your videos, just discovered your channel and have been binge watching for longer than I'd like to admit haha ^^ Keep up the good work!
I relate to this so much. If only this video could have existed during my pregnancy. I would have forwarded it to every person close to me. I had to have my mom or husband at every midwife appointment and it was very helpful. However, not having a diagnosis at the time really made things a lot worse. I was pushed around the whole time I was in the hospital. I definitely will plan for a home birth the next time around (if it is a healthy pregnancy).
I think not being diagnosed was so hard for me - because everything is so intense and you don't know why! Hope you're doing better now!
@@YoSamdySam It definitely gets better!
Ha! 5 minutes in and this is so relatable. Telling people straightaway, check! Baby as parasite, check! Not buying stuff or getting too excited in case something happens, check! Struggling to talk to people in antenatal classes, check! I can also thoroughly sympathise with first trimester fatigue. We were in Thailand when the baby implanted and I let my husband go eat out at restaurants by himself. Totally unheard of.
I have quite a few traits of ASD but either way I have had sensory issues since existing. My pregnancy was rough. I was not excited and morning sickness lasted well beyond 3months. I felt my baby move maybe 2 times. She was not past due but by my due date I just had a scheduled csection because my body was not preparing for labor. Not effaced or dilatied.
Equally, I hate the pain scale too. I don’t feel things until it’s much worse. Got a kidney infection and never felt a UTI etc.
Wow I felt the same during pregnancy!
Epidurals aren't supposed to completely make you numb. You still feel pressure and pulling etc. but you shouldn't feel pain.
What is the name of the hair color that you have? I love it.
a video on ASD and pain would be awesome. i have no idea how to explain to people that their pain scales are ridiculous. i am in a constant state of pain ergo am indescribably tolerant to it. i broke my back at L5-S1 and didn’t realize it for more than 10 years. had surgery (TLIF) on a wednesday and was back at work on full duty 12 days later. i was a mechanic at the time. not to mention i heated my house with wood so i had to carry that in.
Thank you so much for this video. Have you ever met other adults with autism? I wish I could meet you or someone like you in person. I haven’t ever met any other autistic adults like us. I got diagnosed a couple years ago. That’s awesome the UK has documents you can even make. I hope to become a mom soon and I’m so scared of being pregnant.
So you’re telling me that all this time, I’ve been gaslighting myself for being “ungrateful “ about my “easy” pregnancy?! 🤦🏽♀️ What a relief 🥲I wish I would’ve known this. This is the most relatable pregnancy experience I’ve heard; even down to the parasite. 😂
I... Have so many thoughts... This whole video rings so true. I had perinatal ( I think that's the right term?) depression undiagnosed ofc because I just kinda suffered in silence. I didn't even tell my husband how I was feeling partially because I didn't understand it and the shame I felt. I wanted a baby so bad... And then I was pregnant and I felt..... Off? It's hard to explain the bigger the baby got the more I felt like I had an invader in my body and I wanted it out. I didn't want to be pregnant anymore, but also felt trapped because there was no way out but to wait and have the baby.
I also made the parasite joke. It was the worst thing Ive ever experienced. I just.... Idk how to explain it but yeah. I'd maybe even say it was traumatic? I'm just glad there is a reason even tho I'm just finding out what that is, but I can maybe reevaluate and heal mentally after being pregnant for 2 years basically(I got pregnant again when my daughter was 4 months old) and hating every minute of it. I'll never do it again.
Wow I wish I saw this a year and a half ago 😅 I now have a one year old and about 6 months ago I realised I am autistic. The midwives in the hospital weren’t taking me seriously because I was so quiet and calm. We also had a lot of anxiety right before the birth because of the Covid restrictions. I’m just glad that now I know and when we do have another baby I can factor that in :)
I got pregnant with twins (2 babies which doubles your hormone rate) and I had such bad morning sickness and nausea I couldn't eat for 3 months and was actually so sick I couldn't even go to the loo without puking and I actually vomited in the street and people stared at me because I didn't look pregnant at the time. I only drank Orangina, which was the only thing I could actually drink (I couldn't even drink water). I ended up taking medicine given to people who have cancer and get sick because of the treatments because my GP thought that I was in mental distress and that it was really bad for the babies and it helped me get through the first 16 weeks (the hospital staff didn't care). I was exhausted as well before giving birth and felt like I was 80-years old and I wasn't prepared for what was going to happen but I was part of the twin mum community and they really helped me deal with all the issues the medical teams couldn't be bothered to deal with. Also, my kids were and still are hyperactive and the kicking was bad. I had to lie down for a month because the kicking was unbearable and I kept fainting because of the heat and my low blood pressure.
I didn't have a clue I was in the spectrum at the time but I didn't experience post-natal depression although my twin girls were born prematurely (32 weeks - 1.5 and 1.8 kg when they were born without a C-section). Breastfeeding really helped and I wasn't working at the time, otherwise I wouldn't have been able to cope with prematurity, breastfeeding, etc. I was able to look after them for a year and breastfeed them exclusively for 6 months.
Having a blog and talking about all the issues I went through really helped and the twin community was a better source of information than the medical teams, which is a shame really.
The epidural did work at the beginning which was a relief because I could sleep during the labour, but it stopped working in the end and I had to deliver 2 babies within 9 minutes, and the pain was excruciating. Too bad some people don't know how to communicate about medical issues, even if you're not in the spectrum. If I had had another child, I would have made myself really clear that there was no way there were going to treat me like that. Especially because they told me to not take any drugs during my pregnancy (which I can understand) and stuffed me with sedatives when I had an asthma attack and they didn't believe me.
Long story short, despite these negative issues, I was over the moon to have 2 babies and they were in good health and they are now 10-years old and perfectly healthy.
As far as the pain relief is concerned, I have to say that it didn't work and pretty felt much everything when I gave birth, but I didn't care, the only thing that mattered was to deliver healthy babies. I did feel drained and I was sleep deprived for 6 months and never recovered from it. But still, it was well worth it and my daughters are my pride and joy. They're adorable.
Great advices and video, stand up for what you think is right, get support and rest, rest, rest and try the Pregnancy+ and Baby+ apps, which are really great when you ask yourself too many questions, which is actually normal. It was the happiest time of my life and I didn't have any body issues or concerns about having two babies in my wound, I was just amazed at what my body was able to do.
I didnt experienced the sadness and emotional disregulation expected. Felt like, really regulated. Second trimester now, nausea stoped and arfid is easy to manage but suddenly so so tired
For me was very interesting. I got to handle my sensations and rename them, as it was "the first" time I was experiencing that. This happened with my third child, who was born at home. Definitely the best decision ever. My first daughter was a c-section and the sensory thing was hell: bright lights, mean nurses and md's.
Yes! I've been thinking about doula for autistic women! It's a great idea! Read about Michel Odent, for us, this birth journey can be awesome. ✌️❤️🏵️ It's all about managing fear, avoid triggers and letting the particular hormonal dance go as it has to do. 😘
Pain scale thing...totally agreed.
I loved being pregnant and having babies. I like being home with them and not dealing with the world.
The hospital was absolutely horrible and extremely overwhelming. People also try to touch you all the time and I was told I was rude for backing away when people would try to touch me, and for asking them not to talk to me.
My son was breech too but they turned him from the outside first. I refused c-section, it scared me to death for the same reason. I would vomit all over if I felt them tugging on me while I knew I was open.
Cancer was way worse for me than having babies. The bone marrow biopsy wasn't numbed and I panicked and threw up all over, violently shaking. Many surgeries and the pain that followed.... The worst anxiety of my life.
my son is autistic and celiac with mast cell disease-life is so hard for autistic people
As a recommendatiopn (rule of thumb), I would say: Painscale-max be the most torturing you've ever experienced, or an amount of pain that makes you want to get unconscious (read: die), unconditionally. I have been on "let-me-die"-level (mandible-inflamation with 42°C-Fever(the temperature that makes your brain-cells solidify)). On the up-side: My frequent head-aches don't seem relevant anymore^^
For me, the hardest part was the complete lack of societal support for autistic gestational parents. All of the “support” is clique-based; you get support if you make the “right” choices or if you are the “right type” of parent. And when you don’t understand what these labels are because you don’t get social constructs and don’t build an identity around personal preferences, it’s just social rejection after social rejection.
In America, it is considered fringe to have a baby with a midwife outside a hospital. I had both my babies at home, in the controlled environment set by my husband and me. It was amazing. I got a lot of push back from family and friends because it was so unconventional to do it this way but I had extremely skilled midwives that were very respectful. I didn't know I was autistic at the time of having my babies, but if I had to have a hospital birth, I think it would have been extremely traumatic, just by the way birthing women are treated here in the states in general. Pain was really scary with my first baby. That was the kind of pain I was not prepared for. The second birth was such a breeze compared to the first. I'd do it all over again exactly the same way if I had to. I would have had many more complications if I had mine in a hospital simply because I find advocating for my needs very hard to do because sometimes I don't even know what my needs are.