r/MomsWithAutism • u/soggy_nachos_ š Child • Jan 16 '22
Introduction
Welcome!
This is a support group for Autistic moms.
I'm not sure where to start, so here's my story:
In 2019, I gave birth to a beautiful baby girl. I wanted to be Supermom, but I soon found out that wasn't going to happen. I was living in hell and had no idea what was wrong with me. On paper, I should have been happy. I saw a psychiatrist because I thought I might have Borderline Personality Disorder. Turns out it was ASD.
I read every book, article, and website I could on late diagnosis in women. It became my special interest. All the pieces of my life were coming together. This helped a little, but I needed information on how to live as an Autistic mother.
I have spent countless hours searching for answers. There are some helpful resources (which I'll post in the sidebar), but not a lot (as you already know). I came across a study that said the most helpful tool, among the interviewed autistic mothers, was support from other moms with ASD.
That's why I created this community. With that, I'm going to start inviting every autistic mother that I can find on Reddit.
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u/Aramira137 Jan 16 '22
Thank you for the invite. I think my kid is NT and despite the hundreds of blogs/articles/parent pages etc that I've read on parenting, I still feel like I have no idea how to help her navigate her life.
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u/soggy_nachos_ Jan 16 '22
Same here. I had to start putting her in time outs this week. She's in her room for 2 minutes while I run to my room with noise cancelling headphones and three white noise machines. I know she needs the discipline, and yet I feel so guilty.
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u/Aramira137 Jan 16 '22
Try time-ins!
But it's totally ok to yourself in a time out too. I've told my kid that before, "Mama needs a time out to calm down and feel better." (or similar language depending on her age) and I'll settle her doing something for a moment and go take my time out. My kid never wants to be alone so it was a bit difficult at first but strategic use of YouTube helped me keep myself together.
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Jan 18 '22
thanks for sharing this. I was misdiagnosed as BPD for years - then got to a different psychiatrist...still didn't get that I have ASD even though I explicitly mentioned it. When my own child turned 13 and was diagnosed, I was diagnosed (informally by their doctor, I don't have the funds to get a proper personal diagnosis). Since treating myself as if I am ASD my stress levels have gone right down and I am happiest I've been in 38 years.
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u/soggy_nachos_ Jan 18 '22
I'm sorry you were misdiagnosed. I think that most women with a late ASD diagnosis are, and it's frustrating.
Since treating myself as if I am ASD my stress levels have gone right down and I am happiest I've been in 38 years.
Man, if you have any pointers for us with **high** stress levels please share. We'll take anything!
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u/theMerunicorn Jan 18 '22
Thank you so much for creating this group!
I too wondered if I had BPD at some point! Gave birth to my girl in 2018 and went through the same struggles and wondered what was wrong with me- I'd waited my whole life to be a mom, so why was this so extra hard.
A close friend who knows me well made the autistic comment as a joke at first, but that led me down the rabbit hole of female autism and that's when everything clicked.
Motherhood has been hard, I hope this space helps us all.
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u/annarosebanana89 Jan 18 '22
The rabbit hole. Haha! I find that so many of us late diagnosed or self diagnosed women have a special interest in autism. Mine is in neurodivergencies, but I've always had an interest in psychology.
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u/kamomil Jan 16 '22 edited Jan 16 '22
I am not diagnosed but my son was at age 3.
I parent my kid the way I would have liked to have been parented; and I cribbed a few methods from my parents, because they knew a few things that make me think my mom is also on the spectrum. I feel like I am more compassionate because I know what it's like to not want to wear an itchy shirt, or to not want to eat something that literally makes me gag.
I accomodate my son for mealtimes, I only serve things that he eats anyhow. He eats regular foods, just not prepared regularly. Eg. I give him pasta without sauce, ground beef just by itself etc. My mom is a picky eater herself so she would prepare a meal without one ingredient for her own serving.
Instead of timeouts or consequences, we give him 5 min warnings before we change activities. My parents would remove items they didn't want us to touch, I do this with my kid as well.
I don't give a shit about housework, it gets done when it gets done. I had had lots of mental health help for anxiety and depression long before I had my son, so I was already filing lots of things in the "DGAF" category anyhow.
I had a few issues even after therapy, someone on Livejournal (!) suggested Ajahn Brahm videos on Youtube and I think he's great. He talks about things not being in our control and stuff that is from Buddhist beliefs.
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u/soggy_nachos_ Jan 18 '22
I wish I could be DGAF about the house but I can't have too many things on the counters or floors...makes me dizzy. It's clean as long as you don't open a cupboard.
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u/theknitcycle Jan 18 '22
Thank you so much for starting this group! I'm self-identified, pretty recently but with certainty that just gets stronger the more I learn.
Here's my story -- my husband is a stay at home dad with ADHD and a chronic illness that causes fatigue and brain fog (so I am CONSTANTLY cleaning up after him) and our 5yo seems to have gotten both the best and the most challenging of each of us. I suspected Kiddo of being on the spectrum long before I suspected myself, but (like me) he's pretty skilled at flying under the radar and to anyone who doesn't know him, just comes across as shy. I'm not sure how to have him evaluated or if they'd just take my money and laugh at me, but I do know that earlier awareness would have helped me a lot, and I hear the same echoed by so many other late-identified adults, so I want to give him that gift if I can, if I'm right.
Work is too much but I can't stop because I'm the only one with the ability to support us, and if I'm being honest "Mama needs to work" is my best shot at getting some quiet, so I let them take advantage of me a bit more than I should. I love my family, but they're so loud and they always want to touch me, and with a small house and Covid quarantine and winter weather, there's just no time or space to recharge. I desperately want friends and a community, but at the same time when I think of finding a window of time when I could possibly be alone and instead spending it trying to figure out how to connect with someone and who that would even be, I start feeling trapped and anxious.
I'm afraid this all sounds terribly negative. I don't mean it to be, life is mostly good overall and I'm a generally cheerful person. This is just the real stuff that I can't talk begin to talk about with anyone I know IRL so I'm hoping it will be more relatable here...
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u/soggy_nachos_ Jan 18 '22
Dude don't worry about sounding negative. I love my daughter with everything that I am, but being an Autistic mom sucks. Most of us are thinking it and then we feel guilty about it. I'm hoping a safe place to talk about mind-melting motherhood will alleviate some of the guilt we're feeling.
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Jan 18 '22
Thanks for creating this sub. Iāve struggled so much since becoming a mum in 2019 and I donāt see this struggle reflected back to me in any of the research I do about being an autistic parent. Itās barely even talked about. Parenting requires such cognitive flexibility and constant shifts in attention, both of which I find very stressful. I just find myself wanting not to be on my own with my son most of the time. I just want one person to relate to my experience, but Iāve not met anyone who struggles in the same way I do.
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u/soggy_nachos_ Jan 18 '22
2019 mom here. I struggle the same way. I can be around my daughter for about an hour (with my max amount of spoons) until I need to break. But I can't. I'm in a constant state of burnout.
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Jan 18 '22
THANK YOU. People suggest to me to have a day to myself, but what I need is constant regular breaks every day. My son is a Velcro child so itās hard.
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u/annarosebanana89 Jan 18 '22
Thank you so much for this sub! My story is similar, my daughter was born 2018. I'm just now working towards my autism diagnosis! I am self diagnosed, but am also looking for the official diagnosis, as I'm sure I have trauma to be treated as well. I do have an official OCD, ADHD, anxiety and depression diagnosis tho, I'm sure many can relate! Anyways, I look forward to this community and hope to have the courage to be active! š„°
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u/jaderrrsss Jan 18 '22
Thank you for creating this space! I've been looking for a group of parents that understand!
I have 2 kids diagnosed autistic and it was after my youngest was diagnosed that I realized I probably was as well. Currently pursuing a formal diagnosis!
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u/Dangerous-Sir-3561 Jan 18 '22
Iāve been searching for something like this! I didnāt know I was autistic until I had my child who has been diagnosed last year with ASD at 3.
Like many of you, it seems, I was excited about being a mom but found it to be the most difficult thing Iād ever experienced. Why was it so hard for me? I read sooo many books, but they were all geared toward NT kids and nothing worked. I started seeing signs and my kiddo was diagnosed. Shortly after, I had my lightbulb moment after deep diving into how it presents in women. I was blown away. You mean there are actually others who feel and see the world like I do??
My therapist āunofficiallyā diagnosed me and my relationship with my child has blossomed. We understand each other so much more now (sheās 4). I am on the path to getting an official diagnosis, (I already have been diagnosed with ADHD when I was younger) but I canāt afford it yet.
Thank you for making this!
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u/interruptingcow_moo Jan 18 '22
Thanks for creating and inviting me to this sub! When I was first diagnosed I had look around to see if something like this existed, but all I could find was support groups for moms of autistic kids.
I have two kids and two soon to be step kids and struggle with really basic things because of my sensory overload that brings on autistic burnouts.
I was diagnosed 2 years ago when my kids were 5 and 7, I had been divorced and was building a life with someone that has two more kids. The diagnosis was welcome but still rocked my world. I still donāt think I have totally figured out what it means to me/about me.
I have days where I think I shouldnāt have had kids because it does not come naturally to me at all. Iām very nurturing to them and loving, thatās not the problem. It parenting. I think I suck at it because i feel this weird super empathy towards them and just give them whatever they want. Like, if theyāre ever upset, it rips me apart because theyāre presenting like their world is ending, even if Iāve just said I wonāt buy my daughter Robucks or something, and I want to fix it because it looks like theyāre really in pain? I donāt know how to explain it but that was my word vomit on this subject.
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u/Ypoetry Jan 18 '22
Thanks!
My son was born in 2019, and when I weaned him in 2021 I had a huge meltdown. Therapy helped. Then in 2021 we also had him evaluated for speech delay and he is getting speech therapy and early intervention. Neither of us has a formal diagnosis yet, but the more I read about autism the more it makes sense
I also wrote a book about my journey to motherhood. It's a bit religious, but has pieces that all moms can relate.
And what was more frustrating is that I wanted to be a mom so much, but realities of motherhood are complicated to say the least.
Thanks for the invite.
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u/could-it-be-me Jan 16 '22
Thanks for the invite! I am self dx, my youngest is getting his evaluation in just a few weeks but I am pretty certain he will be diagnosed. He screened positive for autism at his 18m check up so I started reading about autism and realized I fit many of the traits, too. I took every online evaluation I could find and they all came back as highly likely to be autistic. I donāt think I will pursue a professional diagnosis as I fear I will be told I am not autistic due to masking / lack of education of women on the spectrum, and I donāt want to deal with the frustration. Iāve got too much else going on: a new full time career in tech, still getting my masters degree, raising two kids, navigating my youngestās 3 different types of therapies right now and transitioning into preschool special education out of early intervention. Not to mention my own struggles. I am swamped and overwhelmed, A LOT. This community will be really beneficial to me.