A Personal Journey on How I Handled Being Pregnant and Having Autism
Being pregnant and having autism, can really make the experience be overwhelming in ways that are hard to describe.
When you are pregnant and having autism, the experience can be overwhelming in ways that are hard to describe.
I am an autistic mother, and I have had two children so far, with a third potentially on the horizon.
While I am not an expert in anything medical or psychological, I can share what it was like for me to be pregnant and having autism
While I am not an expert in anything medical or psychological, I can share what it was like for me to be pregnant and having autism.
My First Pregnancy Experience: Pregnant and Having Autism
My first pregnancy was a whirlwind.
Being pregnant and having autism brought with it a set of challenges that I could not have prepared for.
It was not just the typical pregnancy symptoms though I had my fair share, it was the unexpected, intense mental strain.
I struggled with prenatal depression and later developed postpartum depression (PPD).
The emotional shift was quick and sharp, and my autistic mind, which struggles to process emotions in the typical way, felt overwhelmed.
Boy oh boy was it a hard being pregnant and having autism at the same time.
And I was clueless.
I DID NOT develop depression the second time I got pregnant and having autism did not affect it as much as it did with my first.
Generally my attitude/mood was much better the second time.
9 Months of Being Pregnant and Having Autism
I was vomiting till about my 8th month. YES! 8th month of my pregnancy.
They said it was a mild case of Hyperemesis Gravidarium.
My sister had hyperemesis to the extreme and I thank god that it was not so severe with me.
Being pregnant and having autism made it difficult to manage the mess and constant clean up, which disrupted my sense of order and cleanliness.
I had kidney stones. The pain was so intense that I would faint every single time I would feel the pain.
And the bigger my baby got. The more pressure was on my kidney stone which meant I was in more and more pain as time went on.
The combination of being pregnant and having autism made it harder to process this pain and find effective ways to cope.
Throughout me being pregnant and having autism, we were also trying to move house and find a bigger place to live.
We were in a studio apartment, looking to go to a 2 bedroom house at least.
We wanted our kid could have more space to move. I mean our studio was very small. It was great for a couple, but too small for a child.
SO to summarise the first time I was pregnant and having autism:
- I was pregnant and having autism combined for the first time ever.
- We were looking to move house.
- I had kidney stones.
- Depression during me being pregnant while having autism and Postpartum depression developed quite quickly.
- And I was vomiting till my 8th Month.
1. Pregnant and Having Autism
I wanted to have a child. I had prepared myself mentally to get pregnant and having autism and also to have a child.
An amazing book to read on this is, ‘From Here to Maternity‘ (Pregnancy and motherhood on the Autism spectrum – ie: How to handle being pregnant and having autism)
It was not an accident nor a surprise pregnancy. We planned for it.
However, I did not realise just how difficult it would be mentally to become pregnant and having autism.
Very quickly, fast changes were happening with my body, hormones and mood went from 0-100.
As well as very crappy circumstances. It caused me to go into a depression. Right from the beginning.
My mind cannot process emotions very well. I have taught myself how to cope socially. However, I learn from experience.
And I had never experienced being pregnant and having autism before. So I had no way to learn how to deal with it before it happened.
Anyway. I got pregnant.
Advice for every woman wanting to be pregnant and having autism
If you have people who you are comfortable with and who have the spare time.
Ask them to
- hang out with you.
Keep your most trusted and best people around you. Having company is so important in these situations.
I did not have anyone. Except my husband. Who was working 7 days a week. Yes 7.
I had just moved to another country so I had no friends, no acquaintances, no family. No one around me.
If your circumstances are like mine,
2. Go out for a walk. Sit and have a decaf coffee somewhere etc.
If you could not leave the house like me,
3. Watch shows.
Friends, Seinfeld, Big Bang Theory – really kept me going. Seriously.
Without those I would have lost my bloody mind.
Also
4. Baking kept me nicely occupied.
Some of my best cookie and pastry recipes developed during that time.
In a situation that is so unfamiliar and scary, do and keep things near to you that make you feel safe and comfortable.
If you find yourself pregnant and having autism, one of my biggest pieces of advice is to surround yourself with supportive people.
Isolation while being pregnant and having autism is tough, so find your community if you can.
2. Getting a Midwife for the duration of being Pregnant and having autism
Right off the bat you need a midwife.
And because of demand etc you need a bunch of them on rotation.
Unless you go to a private clinic where the midwife is yours and yours only. You will be assigned a few of them.
What happens when you form a connection to one midwife however you are given a different one for birth etc?
Its not easy on the mind. Especially for someone who is Autistic.
My advice for those who are pregnant and having autism is to inform your midwife team about your condition.
Advocate for continuity of care and request a smaller rotation of midwives if possible. This will help create a sense of familiarity and reduce anxiety.
Being Autistic means that we cannot be comfortable immediately with strangers. And we take time to get comfortable around new people.
Most likely any touching with strangers is very uncomfortable also.
We are assigned a few strangers. Who in the next 9 months will touch us. Look at our vaginas, check our dilation, as in stick their fingers up your hooha, touch our bellies almost every week and be in our personal space. Our homes and our bodies.
It gets very intimate, very quickly.
Even during me giving birth I was extremely uncomfortable having my midwife around me and touching my hooha. Even though she had been with me for the last 10 months. Yes. I had long ass pregnancies where I went over my due date each time.
It just takes me a little while longer to get more comfortable with someone.
So that is an extremely difficult aspect of being pregnant and having autism.
Advice
Mentally, prepare yourself. Read books. And watch videos of others being pregnant and having autism.
I planned my ovulation and was keeping track of my cycle and everything surrounding it.
Really, really get involved.
My advice is that you let your midwifes/clinic know that you have Autism and ask, if possible, to have someone more understanding of mental health.
IF possible ask for a smaller rotation of midwives.
Also, understand that you cannot do it without a midwife (99% of the time).
It is just something that you have to accept and force yourself to be as okay as possible with.
3. Complications in Pregnancy
Right this was what screwed me over. I had several complications.
3.1 Vomiting in Pregnancy
If you do not have nausea/vomiting during your pregnancy/ies. DAMN MAN. YOU ONE LUCKY SON OF A ……
Vomiting is extremely uncomfortable and poses its own challenges, especially for someone who can be described as OCD clean.
I would run as fast as I could to the toilet to vomit. To avoid the mess.
I would spend a long time and a lot of products just cleaning the stuff up. And it would bug me. And I would still feel like I could smell it even after. EVEN when my husband assured me he could not smell it.
Lack of food also means lack of energy. Which when I was a housewife was not too much of a problem because I could take my time to rest etc.
However, for my second pregnancy. Damn.
There was no rest. I was a full time mother AND housewife.
My kid was around 5 months when I got pregnant again.
Diapers caused my nausea to skyrocket and breast feeding DRAINED me.
I had to keep eating to produce breast milk even though I was vomiting almost everything I ate.
Advice
Keep snacks. If food is difficult to keep down.
Buy high powered energy/protein filled bars.
Or make your own Granola/Muesli and keep it around to pop into your mouth whenever the opportunity arises.
Nutty bars are the best!
High calories, High energy.
Night or day. Especially if you have another child you are still breastfeeding and need to keep your milk supply flowing.
Chew on small fresh ginger cubes.
3.2 Kidney Stones during Pregnancy
During my 1st pregnancy. I had no idea I had kidney stones and I thought that the pain I was experiencing was normal through pregnancy. Or that I was weak and unable to hold my own.
The pain would come at random times and would make me faint because it was so bloody intense. Only for a few seconds. Till my body could come back to itself. But some google searches told me it was my womb expanding. NO. It was not.
Once again Dr. Google was wrong.
Every time I would need to pee, which was a lot. Because. You know. Pregnant. It would be painful.
It led to even more hospital appointments, more touching, more strangers around me etc. I hated it and it make me miserable.
Anyway. This also had an affect on my husband.
He would not be comfortable with me going out on my own. Nor would I.
He was worrying a lot, ontop of his already stressful job.
The household became tense and very stressful and very depressing actually.
Since he was working full time, the shopping and all its nonsense fell on me. However, what happens when I get a spout of pain and I faint in the middle of the street.
NO. I did not leave the house unless I was with someone.
Namely, My husband.
Who would have to come home from work and then we take a walk, or we do an activity.
Honestly made me feel like some kind of dog. Waiting for their master to come home to take me for a walk.
Imagine not even being able to leave your home to take a walk on your own for fear of what may happen.
Advice
The best advice I can give a pregnant woman who has kidney stones.
- Drink a lot of water
- Consume a ton of non alcoholic WHEAT Beer
3.3 Unable to dilate at the end of pregnancy
During the end of my pregnancy, I could not dilate despite the fact that I had started contracting.
I was contracting for 3 days with severe contractions and still I had not dilated more than 2 cm.
Pain. So much bloody pain.
I had to go to the hospital and stay there.
Because of the fact that I was unable to dilate but I was in labour and I had contractions.
They recommended to break my waters manually to try and speed things up.
This was done and the doctors found that my baby had pooed in my stomach. Meconium.
This meant that I really needed to give birth and bloody soon.
But I was not dilating.
Bloody fudging hell.
3.4 Oxytocin
So the doctors proceeded to give me Oxytocin. To increase my contractions. Fudging FUN.
Fudge Fudging Crappy it was. SO. BAD.
I was doing exercises and tossing and turning while in labour.
Plus I had not slept in 3 days and 3 nights. I was unable to take the pain anymore and so I almost died.
I do remember nurses and doctors RUNNING into the room and disconecting all the wires and drips I was hooked up on as I was beginning to see only Black.
Oh, OH and OH. It might be worth stating that in the country I was giving birth in. They believe that birthing should be as natural as possible.
So I was given no pain drugs/medication at fudging all. FOR 3 DAYS.
3.5 – Epidural
I begged for an epidural. Begged for it. I was given it after the 3 days. After I almost died.
It was the last resort that the hospital was trying to do.
They essentially told me that they needed to increase the oxytocin because it would be dangerous for my baby to remain inside my womb with the meconium.
And if it did not cause me to dilate then I would need to go in for a c-section.
I really did not want a caesarian. Really not. Especially for giving birth the first time.
Advice
Read up on the side effects and the positives and negative of epidurals.
Don’t be scared and if you need it then by all means I am no one to say dont do it.
But be informed.
4. Giving birth
I got the epidural and the oxytocin but I didnt feel anything. I actually went to sleep.
The first form of relief I had felt in DAYS.
The doctor in charge told me she would come and check on me in around 2 hours.
When they came back to check on me, it was 4 hours later.
They woke me up and and checked. I was fully dilated!
They told me to push.
It is the weirdest feeling in the world to push a baby out.
Advice
If you are pregnant and having autism, prepare yourself by learning about all possible outcomes.
Whether that’s reading about epidurals or cesarean sections, understanding your options can help you make informed decisions when the time comes.
- Read up on hypnobirthing.
- Watch videos on giving birth.
- Mentally prepare yourself.
- Try to stay calm.
- Breathe through the pain.
- ONLY have the people in your birth room you are comfortable with. Family wise.
Disclaimer
It is hard.
To be touched and probed.
And to be in such a scary situation. With a ton of strangers around you constantly.
To be around so many people and having to have them be near you so intimately.
The thing is when you are in so much pain you go into survival mode.
Anything to survive. And so everything else blocks out.
Autism and giving birth is like folloing all the steps of a manual but still now being sure how to piece together the furniture.
Although I do believe that the depression I experienced throughout everything had a lot to do with it but because my mind was so busy with all the struggles I was unable to put 2 and 2 together. SO I just shut down in a sense.
It is worth noting that I did not have any complications during my second pregnancy other than the usual nausea and vomiting.
Which was good because I had another kid who needed my full care and attention.
My second birth was done in a night and without any form of pain medication.
When my first pregnancy was a pregnancy from hell. The second one in comparison seemed like a breeze.
Truly.
A breeze which was still very uncomfortable because of all the rotation of Doctors/Nurses/Midwives touching me and coming into my home, and touching my hooha.
5. After Birth
Body
The changes to my body really messed me up for around 2 years after giving birth.
Not in a vain manner. But because it is different than it has been my whole teenage and adult life.
I do not do well with change. And boy did my body change.
I tried to get it back to the way it was before I got pregnant and I could not.
I lost the weight but loose skin and stretch marks never went away.
Routine
Until that became my new normal, I could not get used to my new body.
Then of course there is an extra being in my home. Who has changed up my whole routine.
Changed everything about every single little aspect of my life.
As someone who has been pregnant and having autism, I want to assure you that although the process is full of challenges, you will find moments of joy that make it all worthwhile.
Autistic parents
You need to understand that your whole life will change.
Everything about your life will be different.
But you will be okay with this. Really.
Autistic people can be mothers and father and we can love and we do.
And we are not neglectful and we are not abusive or absent emotionally.
Thats Bullshit.
As hard as it is. It is rewarding to be a parent.
So many proud moments. Joy, and happiness that only children can bring into your life.
My child happened to also later be diagnosed with Autism.
If you think your child may be also born with Autism then you can prepare to integrate them into the rest of the family.
I have tips on how to do this. Read about that here…How to manage Autistic sibling with typical sibling(s)
Final Thoughts on Being Pregnant and Having Autism
Getting through being pregnant while having autism is not easy, and I won’t pretend otherwise. There are physical, emotional, and sensory challenges that neurotypical parents might not fully understand. But being pregnant and having autism doesn’t mean you can’t be an amazing parent. It just means your path might look a little different.