What if you're an Autistic Parent...

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I see so many advice columns and help guides for parents of autistic children.... but what about parents who are diagnosed on the spectrum themselves? I really feel out of my element here. I love my kid, but I have no idea what I'm doing and paranoid 100% of the time I'm ruining her life by existing.

No body knows what they are doing 100%, you just need to try your best and hope you did good.

Well one of the things I like about WP and particularly this subforum right here, is that many who write here are themselves on the spectrum - unlike "so many advice columns and help guides" that I've seen. I do wish the frequency of posts here was a wee bit higher, but haven't found a better site so far. So maybe hang around here more and ignore some of the other stuff?

About "ruining her life by existing" ... excuse my French, but what a load of hairy old bollocks! If you are able to perceive and admit that you "have no idea what you're doing" then IMHO you're doing better than the overwhelming majority of autism-industry professionals - at least the ones I've met. Of course it ain't gonna be easy but who's gonna do a better job than you?

You're right I think there is a lack of resources on this topic and there's a lack of resources on how to co-parent with someone on the spectrum, too.

It's not the answer, but admitting that you don't know what you're doing (no one does, really) is a really powerful and positive step to parenting better. Admitting that you have inherent weaknesses (we all do, but they're often different) that affect your parenting is just as important, too.

Does anyone have anything that they've found useful?

I found it difficult to believe, all the fumbling guesswork that being a parent is. I did much research on the subject and my wife and I were thrown way off anyway when our daughter arrived. People have been having babies forever so why isn't there a step by step guide? Every person is very different so you kinda just use your gut, and lots of guessing. I try things other people suggest and most do not work (some do). You will find a place within you that feels your kid and just try to work/guess around that. Remember what it was like to be a kid and try things you liked. Earplugs help me proceed calmly when the sippycup hits the fan. Don't worry so much. You can't go wrong with respect and kindness.

Noise really, really gets to me. Pretty quickly, too. When I'm home with my kid I put on headphones to tune it out. She's at an age where she'll scream for no reason. I know it comes off as me being inattentive, but I can't handle the screaming. It makes me cry too. My boyfriend has been working at home, so it just sets off one tantrum after another because he's working and can't play with her like he does when he's just home to relax. But she's only 19 months old and doesn't understand that he's busy and can't hang with her. So several times a day when he has to get back to work she throws huge fits. Eventually she calms down, but they can last up to 10 minutes at a time. I just have to tune it out because it drives me up the wall.

Maybe you could configure your bf's work day so that he doesn't interact with your daughter during it? He could take his lunch break while she's napping, etc. The "coming back" and "leaving" again is distressing her.

Re. Trying to work from home when there's a 19 month old autie around the house.... Been there, done that, got the t-shirt.

Unfortunately, in my experience it just doesn't work, and does not get better in the next few years. Of course your kid may be very different from mine, but I would recommend to separate her from your boyfriends work, so they're not in the house at the same time. Either he finds another place to get his work done, or someone takes your daughter out of the house while he's working, or some combination. Probably easier said than done, I know

Fortunately, he travels a lot for his job. It's just the past couple of weeks have been difficult as his assignments were all local or could be done remotely. Normally I'm alone with her all day.

Could you join a local parent group? I know that sounds kind of antithetical to the needs of someone on the spectrum - but at this age in particular knowing other families and getting together with them helps a lot. The kids play with each other and take the pressure off you to be 100% present, and usually the Moms help each other. It's not too difficult to find things to small-talk about because everybody's a bit frazzled anyway. They often happen outdoors so the noise is less of an issue. You might also see if there is any kind of tot class available to you - school districts often have them, as do libraries.

Going to parks or playgrounds or community centers - I spent several winters in McDonald's playlands and summers in the park when DS was little - can also give you a way to interact with your child that is less intense than at home.

I had a really hard time being touched all the time; I kind of still do. I somehow managed to make it work; I think by making sure I had breaks (often those came in the form of playdates with other kids, even when he was a toddler) and really, really taking time for myself when he had a nap. My house was a mess, laundry was everywhere - on good days, I did the bare minimum to keep everyone fed and the house at least not unsanitary, and if I had it to do again I would feel less bad about it and get someone to help.

Nothing wrong with wearing earplugs if you can't manage the noise; you can tell your kid needs you whether or not you can actually hear (deaf Moms do, right?)

I've used earplugs when I wanted to hold my baby and she was sick, it helped so much.

I think there are a lot of parenting books and theories and though they are aimed at neurotypical parents, the joke that it's because nothing works for everyone is true. And every child has different needs.

If I could go back for one thing that would have helped me as a parent, it would be to have understood how to deal with systems earlier, like schools. A parent is primarily a parent and you find ways to love and raise your child, or people to help.

Even a 19-month old "normal" child is a handful!

There's a new book on the market, I follow this author's blog and FB page because I am interested in what kind of quantifiable evidence there is for all the fluff of most parenting books. You don't have to buy the book, a lot of it is on her blog, but she at least acknowledges things most other books don't: the fact that we don't know a lot, that every kid is different, and that there is precious little hard data out there.

So, in case it's helpful: http://scienceofmom.com/best-of-the-blog/ She has a section on toddler behavior at the bottom of the page.

I have really struggled to find resources for autistic parenting. I have had a fantastic keyworker and she has helped me find ways to understand things. I still find it hard but my eldest two are teenagers and both have careers ideas. I use a lot of lists and keep to a routine. I use headphones and have help to socialize my children. When they are really young under five the noise and constant touch can be overwhelming, but it doesn't go on forever. We went to parks a lot so I wasn't trapped inside with the noise. Used their nap times as a change to rebalance my senses. My time out space is a must. . I would love to of had a chance to talk(write) to other parents facing the same challenges. I always feel like I want a black and white list for each year, development, needs, and what to expect.

I think this is an awesome resource if you are an autistic parent. I'm not fully on the spectrum, but I am not really NT either. There are a lot of people like me, or fully on the spectrum. I think we do a good job of helping one another.

And I do agree that admitting you need help is probably the biggest part of the battle. Once you know you may not be handling things correctly, it allows you to stop, think, and ask questions. It's when you think you've "got it" that you usually make mistakes.

I think it is important, though, that you do not internalize the commonly shared view that people on the spectrum cannot make good parents. That has even come up here sometimes. Please don't listen to it. It's not true, especially not when the parent on the spectrum is aware that they have deficits and actively work to over come it. Can people on the spectrum be bad parents? Of course. But so can people who are not on the spectrum. What makes a good parent is willingness to examine yourself and learn, not your natural-born neurology.

I would argue there is no need to be aware of deficits to be a good parent to one's child (though awareness helps in dealing with other people and with systems) and what's really needed is openness to one's child's experience and needs and uniqueness and the desire to help one's child grow strong.

Every parent comes to places they don't know how to help their child or need help guiding their child forward. I only feel disadvantaged dealing with systems.