Calling All Autistic Mothers!

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Hello! I joined this community website a long time ago, but other things in my life got me sidetracked, therefore haven't been communicating with anybody in here in years! But Im at a point in my life now where Im trying to do more networking to feel a connection with other people that can relate to me. So here it goes.

I just turned 32 years on on Christmas Eve last year, and I've been married to my husband for 2 years. I used to work at a bank at my downtown for 5 years, but I got fired in Dec. 2016. Im now a Lyft driver, but still trying to find the job I really want. Its been rough. Meanwhile, my husband and I were discussing about being parents, and I said I wanted to brainstorm on what it takes to be a mother. Some of his family are aware of this and has shown to be supportive; my aunt in law has emailed me docs and links that deals with understanding the financial strain of child costs, relationship matters, passing genetics, etc.

As much as I appreciate people being real with me on the hard work it takes to raise a child, disabled or not, a part of me feels that it shouldn't matter what the child is born, as long as he/she is healthy and loved with equal respect. But on the other hand, its important to know these things and even get hands on experience before making one of life's biggest decisions. We really want to be parents, and dont want to start at a later age. I understand it's more complicated to raise a child with a disability, and it does affect families one way or another.

Where Im getting at is if I want to start be serious about family pkanning, I should start networking by reaching out to women who are not only autistic but mothers themselves. I want to hear and know your experiences on whats it lije to be a mother, what kind of special programs/assistance you have to make a livibg with your family, the sacrifices and routines you had to make. The changes of relationships you have to endure. Are my in laws in the wrong on pointing out about the risks of passing the genes so much? The more I engage in these conversations, the more it'll lift my spirits in hopes in being a mother.

Any advice and stories would be great to learn. And I praise you guys for all the hard work you do. Thank you!

Hi there I may not be getting this right but in what way are you disabled? I understand you have ASD but you worked in a bank and now as a driver so you must be reasonably high functioning. What sort of assistance do you think you would need?

I personally didn't have any assistance and nor would I have wanted any. The last thing I would have wanted was some do-gooder interfering but that's just me. I understand not everyone is averse to interference.

I have autism and I have two children in their 20's. One has autism and the other doesn't. Both of my children have turned out well and I'm pleased to say they are doing well in their chosen University courses. My autistic son does not consider himself disabled and neither do I. I'm not suggesting people with autism cannot be disabled, but I personally do not believe people with autism have to be disabled too. That's just my take on it though and I'm sure others will have different views.

I have 2 teenagers - a wonderful aspie son, an NT daughter, the latter quite hard to handle...
Don't think I was really cut out to be a mother, it doesn't come easily, but I have no regrets.
I'm not sure I would have handled a child with more severe autism, though.

There's no definitive answer to questions like this, but I have a feeling you'll be OK, if you decide to go ahead.

My kids are 5 and 6, the older likely Aspie, the younger most probably NT, none diagnosed, both doing well in mainstream education.
I read a lot of parenting advice, analyzed it, analyzed my own upbringing, identified things made well by my parents and their mistakes. I need psychological help to deal with my own issues while trying to balance work and family. It's exhausting sometimes.

As for now, my main issue is overstimulation. The younger girl, extroverted NT, gets easily excited to the point I cannot deal with. I work on several strategies to deal with this, mainly redirecting her excitement away from me Giving her a vacuum cleaner works fairly nice.

NT daughters are exhausting

I have 4 kids between 17 and 5. Can’t say how they’re going to turn out. They’re not grown yet.

The hardest things for me to deal with have been the lack of personal time and space (you can get it, but you have to ask for it— make that take it— and there is a whole world out there that will guilt the f**k out of younfor self-care) and dealing with other people’s judgment. NOBODY gets judged more, or more harshly, than the mother of young children. EVERYONE has an opinion, and you can’t please ‘em.

I’d recommend against asking for assistance, unless it’s the kind of income-based stuff NTs get too. There is still a HUGE belief that we can’t parent; it WILL undermine your confidence in yourself as a parent and frankly in my opinion very few things are more dangerous than destroying a responsible, reasonable parent’s confidence in their own judgment.

DO NOT disclose your autism unless absolutely necessary.

Know your stress and meltdown triggers and talk with your partner to figure out how you are going to deal with them.

Remember to leave the kid space to be an individual and not conform to your beliefs, values, expectations as they grow. I think this is the thing my ASD grandfather failed to do (my NT grandmother did too) that really hurt their daughters and pushed them away. I’ve heard that A LOT from people that grew up with ASD parents. My dad (also ASD) didn’t have a whole lot of expectations other than that I would be independent, kind, and stay out of trouble. That helped a lot, but I wish that he hadn’t been quite so impassioned (bordering on verbally explosive) when I disagreed with his political and social values.

Figure out how to keep anxiety from eating you alive. It’s a LONG game with an uncertain outcome. Parenting is the most terrifying thing I’ve ever done.

That said, I love it, and I’d recommend it to anyone who actually wants to engage in the work that is messing around with raising kids. That’s the ONLY good reason to do it, though. Expectations are a bad reason. Someone to Love is a bad reason. A mini-me is a bad reason. “Parent” is definitely a verb; the desire to do it actively Day after day after day for a minimum of 20 years is IMO anyway the only good reason to have kids.

And YES, your in-laws are absolutely wrong to harp on the risk of passing on genes. If YOU GUYS are cool with the possibility of raising an ASD kid, that’s all that matters. NOBODY gets a guarantee that they’re not going to end up with a special-needs kid. I planned and worried about autism— turns out, nobody knew H and MIL have ADHD, and we’ve had to deal with THAT instead. My 5-year-old might have ASD; I’m not going to get her diagnosed unless she needs it or wants confirmation at some point. If she’s has it it’s very mild; my experience is that at that level the stigma is worse than the disease. f**k your ILs opinion about eugenics. But know this— it’s a common opinion. You will be bombarded with it. I’ve had docs pressure me to abort a healthy pregnancy because I disclosed, for no reason other than eugenic bias. Think about how you’re going to deal with that and with ILs negativity, because it won’t go away unless you shut them, and everyone with a similar attitude, out of your lives.

I have a 15 and 17 year old. The youngest may be on the spectrum. The oldest is being evaluated for ADHD this week and may have some other non nt stuff going on. The hardest time that I've had is the sensory issues. High pitch sounds are really bad for me. However, this assured that I met their needs quickly when they were little. There were times that my husband had to help me get alone time (I would think that nts would need it also). It was also difficult doing all the social things. I wanted to make sure that they had a lot of opportunities to socialize and learn all that stuff. So I did play groups, music classes, sports things, parties, sleep overs, etc to make sure they were exposed to the social things. It was exhausting and really anxiety producing for me but I think it was worth it. My kids are really cool people. I like to hang out with them. I think that the world is a better place for them being in it. It is really difficult being a parent but I think it has made me a better person.

I guess my advice for family planning would be, be prepared to ask for help when you need it. Find a person you can trust to watch your kids from time to time. When your battery is run down, it has to recharge before it will work properly again. Practice self care before you have kids so that you know what
alleviates stress after you have kids. If I could do it over again, I'd wait a little longer between kids. Maybe at least 3 years. Mine are all 2 years apart so I haven't been alone for over 5 years now, and I find having solitude crucial to maintaining my sanity. If you can afford daycare, I would highly recommend it. I waited too long to start my oldest; she was 4 and had a difficult adjustment. Keeping her home didn't help her socialize because I wasn't very social.

I love my kids, but I do have trouble coping sometimes. (5 ASD, 3 HSP, and 11 months NT) Right now, what is helping is I'm seeing a therapist to sort out non ASD issues from growing up in a dysfunctional family. So if I can keep stressors to a minimum, it helps. Deal with things as they come up and don't let them build up.

I wouldn't trade motherhood for anything. I may have a hard time socializing with everyone else, even a little still with my husband, but I have no social anxiety at all with my kids. Besides practical advice, I'd say, if you want kids, go for it. Trust your instincts with them when you get advice from well-intentioned outsiders. You'll know what feels right even if you can't explain it.

In many ways we are actually at an advantage.
We will never be adult hypocrites saying stuff to our kids that we don't mean or doing things we don't believe in because "one does". I know really wonderful Aspie mothers and my grown kids are strong, capable, kind individuals so I think our somewhat different parenting skills worked out. We are mostly just genuinely ourselves and don't do the being the grown up act. When our kids are struggling with things that are overwhelming or difficult, we get it.
We will read everything we can get our hands on to do parenting the very best way possible but also make a lot of it up as we go since that is mostly how we have had to cope.
Really really hard is having to push off a meltdown because of putting the kids first. I've pushed ones off for weeks and ended up with total shut downs when I couldn't move a muscle for a few days. I was lucky to have a best friend husband but he would get frightened by me going comatose so I would sometimes pretend I had a stomach flu or something because it all was beyond what I could explain to him. I didn't have a network or community around me for a lot of it. Looking back I wish I had had that. At that time there wasn't such thing as internet groups to turn to.
Please, if you can, find good support networks to hold you while you hold your kids.
Maybe all of us mothers should get together and write a book or set up an Aspie mom Facebook group or something for practical everyday stuff.

I recently found an old diary from about 20 years ago and remembered what mothering with no support network actually was like! Remembered when my day often started at six, went straight through without a break and ended at midnight, after getting them to stop jumping on their beds and sleep at about 11:00 PM. So much laughter and love but also really hard at times.
Not to scare people off. But this can be very real. We really really need to set up good Aspie parenting support communities.

Here is one day in the life from when Áine was three and Ryan almost two.

..........................

... I am rung out and exhausted in body and soul. I seem to have no authority over the children at all. If I can get them to the age of five it will be a miracle....Cartoons I designed for Lilipoh Magazine were ripped to shreds, the wallpaper is torn off the wall or drawn on, the sitting room table is now just fit for fire wood, the back of the piano is broken, photographs are scribbled on with biro, the molding has been pulled off the surrounds at the bottom of the walls in the children's room, all my face cream squeezed down the toilet, Áine's pee from the potty dumped in the bathtub, enough food gets thrown on the floor that I sometimes think we should leave it and start an indoor compost pile, various children's books torn beyond recognition, every crayon broken into as small pieces as they will go....

I seem to be going on at them non stop:

Áine, get down off the back of that couch, it'll tip over! Ryan. CLOSE the fridge! Get out of there now. What do you want? No, Ryan, my love, you can't have milk, here.. here's some juice(he has a temper tantrum on the floor) ÁINE!! ! Stop pounding on the piano. I said don't pound, play gently. Play me a nice song. Ryan, leave those books... come through to your room and play there. Áine. NOT SO LOUD!
It's hurting my ears. Come in here now... come with us. Áine come on, we will go through and play with Ryan. Come with me. See... RYAN!! !! Take that string off of your neck!! ! Oh, God! No unwind it! Its too tight.. here I'll do it. Áine come in here. What are you- GET OFF THE BANISTER!! ! NOW. Come in here and draw something for me. Ryan, what are you doing? DRAW with it, don't eat it. ÁINE!! !! ! See. Why don't you listen? Ahh, come here ( scream, scream, cry, cry) Now stay off that, OK? Ryan, ...Ryan, love, draw on the paper! Oh... look at the book. The writing is all covered, how will we read that now? Draw here. Look. No. NO!! !! OK, give me that (he has a temper tantrum on the floor. While I am trying to comfort him she runs through to the bathroom. Then yells: wipe me!) OK! OK, I'm coming, Áine! ( WIPE ME!! !) YES, I'm coming. Ryan, you'd better come along. Come with me to see Áine, OK? COME ON! ( WIIIIIPE MEEE!! !! !) I SAID YES, I AM COMING! Ryan, come on, come on... OK, stay there on the floor ( I take all the crayons with me) OK, Áine, here I am. I- why did you take all your clothes off? Come on, put them back on again, it is freezing! ÁINE! No, come back here and get dressed.. ( I scoop up her clothes, still trying to keep hold of all of the crayons, and follow her. She is in the kitchen. She climbs up on the dryer and dances on it, singing the melody from Carmen: dedat-dat-DAH, dedat-dat-dah, dedat-dat-dadadada-DAT-dat dah...stamping thunderously). That's lovely. Bravo! Bravisimo!! ! OK, here, get your clothes on. Áine, that is enough. Stop it. Put something on you. NOW! …Ryan?RYAN? WHAT IS THE MATTER??? Oh God, he's fallen in there! Here down you get. SO. Now put these on, I'll be right back. Ryan, What happened? YOU ARE NOT TO CLIMB UP ON THE WINDOW SILLS!! !! OK, its all right. Come here (I sit down on the floor and take him on my lap for hugs and cuddles. Suddenly I can't move any more. I can't get up. Shut down hits. Ryan goes through to Áine in the kitchen and I sit there like a zombie. Until Áine calls: Mammy, Mammy, Uh-oh!! ! Look what Ryan's got!! ! and I jump start myself and am up and going again. A little while later I am lying on the couch with my eyes shut, singing a song. Comatose but somehow gently keeping my voice going. All the pillows and cushions and pots and pans are on the living room floor and the kids are playing stepping stones. I made this up for emergencies when I need rest. They step from pillow to pot and from pot to pillow while I sing and when I stop they have to freeze without falling in the “water” and wait till I start again. I can sing when I am half asleep. They love this game. So do I. Necessity is the best inventor...
Sigh.