Parents on the spectrum

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You're absolutely right. I just find it hard to maintain that positive outlook internally. Have put so much effort into trying to learn and do what's expected that it becomes hard to recognize when to stop trying to do that, when attending to others desire for me to appear "normal" is becoming excessive and I need to just be myself and let other people put up with it. And then finding the line with my children of how much to encourage them to change to fit in versus not looking for so much that it becomes destructive is also hard. And I most certainly want to encourage them to learn and grow, but never to feel they are unacceptable for who they are. Or that something as integral a part of one as understanding things literally is unacceptable.

I really struggled with trying to fit in during my teens a lot and in my twenties. I only really got comfortable with myself in my 30s and that was when I stopped stressing over how I was perceived, the constant self monitoring was exhausting. I don't think I'd change my teen struggles in retrospect as I think it's made me the person I am now and I think our kids will find their own way. We can't protect them from everything, just be there to give them a bit of guidance where possible.

You're right, and life did get easier for me as I got older, somewhat similarly to what you describe, somewhat differently. I did not truly struggle to fit in as I do now until I needed to learn for my children. Don't get me wrong, I tried, I wanted to fit in, and I cared. But it's different with children, and you have to find alternatives to escape when people are difficult. I don't know if I would change anything for myself, but I know I don't want my children to go through what I went through. However, as you say, the struggle does contribute to positives, ideally, and make us who we are, and less struggle will have some effect. Hopefully largely positive, and impossible to predict with certainty.

Seeing differences in children, and then providing the guidance and support without overreacting to the child or to others about the child, is hard. Because there are a lot of rules that shift depending on circumstances when it comes to other parents and to dealing with schools. While remembering and trying to prioritize the people, especially the child. It's worth it, but with schools I find I can't let down my guard.

When I think about it, perhaps I am doing mostly what I think is right for and with my children, but needing to learn to tune in more to others' expectations without overdoing that is definitely challenging, and painful. But necessary as differences and surprises make most people uncomfortable and tend to lead to some kind of negative reaction, often avoidance. Not a good thing if one wants to advocate effectively, and as far as I can tell, that I have learned to do.

There's a book I read when my child was 4 or 5, Shut Up About You Perfect Kid. Despite the title, it is not an angry book at all. Rather, the authors use humor to cope and convey an acceptance that I found very comforting, very calming.

Perhaps there is more out there now. I think I will google and look on amazon.com as well as here for more positive perspectives.

I definitely appreciate everyone's acceptance and support here. It makes a difference. Thank you.

I had no idea about autism till my son's diagnosis, but come from a family of quirky people and my husband is the same. If he hadn't had speech issues we wouldn't have noticed anything because all his other "symptoms" looked like us. We do what we can and I reckon we know him best and he fits in with the rest of us if that makes any sense. We're mostly happy and not looking to change that much.

I'm glad for you. I think it probably helps to be able to take things less as literal than I do. Or have someone provide an alternate perspective. Because yes, a lot of kid things don't seem like they need to be a big deal. Thank you for that.

Anyone have experience with child struggling with high school? On the surface, it seems a lot better for kids on the spectrum than when I was a child, but my perspective is definitely more favorable than my daughter's. She is horrified by the drama---I didn't really notice other people's drama at that age, so don't know what to say or do. I don't believe there is any bullying going on, but she has no interest in peers, the teachers are busy and don't have the time for her she wants. I'm just looking for ideas, as lately she is upset that I don't see things as being as bad as she does, because so much better than years ago. I understand some what overwhelms her, but she notices I don't really get what it's like for her. And I see that she can't understand that. Though I've told her some cleaner stories of what it was like being socially clueless. Don't know if she put that together, either. Anyone have ideas to organize this situation?

My two cents: Emphasize and encourage her associating with the freaks and geeks, even if that is only a matter of sitting next to the other kids who also aren't talking. If nothing else, it will be a buffer zone against that drama and nonsense.

I only made it through high school by virtue of finding a community of like-minded people, about whom one of my high school friends has written a song called, "Me and my friends have Asperger's." (It's pretty good.) Our group was equal parts honor-roll kids and total degenerates. Some dropped out and huffed paint thinner, some went to Harvard early. All were social outcasts, therefore social equals. While that is somewhat unique, I refuse to believe that we have reached a point where the outcasts and rejects are no longer drawn together by their otherness.

I realize you say your daughter has no interest in peers, but perhaps there are others around her who share that lack of interest. My friends and I often did not particularly even interact with one another, we'd just physically aggregate to do our own things, and that physical proximity shielded us from the worst of the asinine crap going on all around us.

That said, I know the school social landscape is totally different now, with social circles being so often based on online rather than physical proximity, so all of the above may just be rank idiocy to even suggest at this point. My son is nine, in third grade, he's somewhere on the spectrum but very high-functioning; he's socially naive but not awkward, and he's very outgoing, so I expect he will not experience high school anything like I did.

Thanks for responding. I keep looking for something that might be gained from the situation of my daughter putting so much energy into hating her school and begging to not have to go there. Although that was possible in the past, it isn't now, and she is putting SO much energy into trying to make the impossible come true, and sobbing and begging....

So I keep searching my mind for what can be gained. This seems so hard for her, I can't find any way to calm her, she seems so angry with me over this....

She is going, and her teachers seem to be trying hard, and to be kind each in his or her own way, and they tell me she is behaving well, and she certainly is great about doing her work. Perhaps the pain she expresses is unavoidable, but as she comes to me, begging me to move her because she hates how things are run, hates seeing how other kids are treated which she sees as so wrong for the impersonality, even while she is given more personal attention that she (not necessarily others) needs, I wish for her to see that we are all different, other children are not her and may do fine with what she wouldn't, maybe couldn't, tolerate. I wish for something more I could say or do?

Is she high functioning enough that she might be able to act as an advocate for those other kids? Sometimes the best way to help yourself is by helping others, and being forced to passively observe others in misery will break anybody's spirit pretty fast.

I agree. But the effort of being social and initiating seems more than she is quite up to yet. So stuck in teen age misery, and I am so sad for her! Doing what I ask, except she is committed to not letting herself be happy in what she considers a bad place.

Perhaps it's a mistake to argue, she is certainly more rigid than I am. Not sure how much to go along with her gloom and doom version of the school. Where many things are difficult, but not so much as she makes seem!

Hi Waterfalls. I'm sorry things are tough with your teen right now. I have three older stepchildren, so I know how tough and angst filled those years can be.

Here are my two cents. Those years are often filmed with struggles for control. There's a reason why most social movements are driven by young people - they're the most passionate about changing their environment, and they feel the most entitled to be able to do so, imo.

Teens often get stuck in, "the world sucks" mode. When they're like this, I've found that there's little to no appetite to hear specific strategies to improve their situation. They want to wallow, and they think their parents are stupid or don't understand.

So, this is what I did. I had a conversation with my stepchildren about choices and happiness. I told them that there are always things in the world that you can't control - in this case it's your daughter's school. But, it could be the weather, your health, where you live, etc. But, underneath that, there are also plenty of things that you do control, like what classes you take, what you wear, and most importantly, whether or not you approach the day positively or negatively. If you decide that your happiness depends on the things you cannot control, you will be unhappy most of the time. I also add you (the child) are the only person who can determine whether you will be happy or unhappy.

I'm paraphrasing and typing on my cellphone, so my apologies for typos or if that is unclear. The whole point is to make the child feel empowered over their situation, since in my opinion, a lot of this rigidity comes from frustration over feeling disempowered. All my steppies are NT, so take from this whatever you deem useful. Best!

Thanks Pddtwinmom. I will try that.

Oh good lord. (Sorry, I know this post is a year old, just reading it now.) Parents are human, and don't always have time/energy to discipline consistently. Most kids will recognize that they got away with something, but that their run of luck can't last. There is no way for a parent who's taken up with making a living, keeping a household going, arranging the myriad things that need arranging, and tending to the millions of small things children need to be solidly consistent with discipline. And parents don't get more time and energy just because a child can't handle an inconsistent application of discipline.

Let me ask you this, does he scream at you after he gets the punishment that YOU always have for him? Like I mean for the rest of the day till his punishment is over? If he does not scream anymore after he receives the punishment but screams days later, that means what YOU are doing is working. Just because screaming continues to happen as days go on does not mean what you are doing is not working or that the kid is taking advantage of you. It just means he knows, in that moment, that he made a mistake and has to deal with his consequence, even if he knows what it is, if it limits the tantrums the way you do it then by all means do what you know is best. This person just entered your life, YOU are this childs parent so he should be listening to YOU not you listening to what HE has to say. You know your child best. Dont allow him to change something that works for the both of you (you and your son), it really isnt his place as he has not raised or had experience with children with AS. Also, it is unfair to punish for a meltdown, as we, yes WE, can not really help it. Their should be an intervention on your part to help him cope and NOT have meltdowns so I see as you should be the one punished for the meltdowns. Meltdowns and Tantrums are not the same. Meltdowns are something that can not be stopped once started but can be made worse. Tantrums are ways we get what we want and you can tell the difference because he become happier after receiving it. Bribes, punishment, and getting what we want will NOT stop a meltdown. So make sure he is being punished for the right things before you put that on him. I am 27 years old and because our brains are not wired correctly we can not just turn off our childlike behavior. We can learn to cope and spot moments that are inappropriate but it is not something we can simply be "better next time" cause every situation turns into a new one, like it has never happened before. Please, help your son cope and maybe research a bit deeper into the behaviors of AS before making decisions on what you feel we should know as adults... We just do not work that way. I do what I can to try and tiptoe around people as to not make a "mistake" but no matter how hard I try, I always end up upsetting someone somehow.

I recommend this book:

From Anxiety to meltdown by Deborah Lipsky

It is written in the eyes of an autistic women and it explains what we go through and causes of why meltdowns happen. I hope you get this book and maybe it will help you understand how you can intervene more and punish less.

Good luck. I hope you find a way for everyone to cope. You are doing what you know, at least your trying and trying to get your partner to understand is going to be hard. I truly hope you take my message as helpful information as I am not trying to upset you. Good luck!

I would agree with your husband that if your son has seemed to accept the punishment that you can change it. You don't change it randomly but you just might make them more severe as he's getting older. You still make them reasonable. I might not let him know precisely what the exact punishment is. One thing your partner did say is your son will start to judge if the punishment is worth it. So he might know he will lose something for 2 days but not know if its tv videogames or computer

My disciplines are always consistent. The only parents who say they cant are parents who make excuses for themselves and why its okay to not try it out and do it. My son has ASD and so do I and I do not punish him with punishments that are unrelated or out of the ordinary. If he throws his books at me, I give him time to cool off and then I make him pick it up. If he trys to bite or hit me, he goes in his calming box and then after he calms down we have a meaningful chat. If he wont pick up his toys and keeps playing, I take his toys away until he cleans up his mess. My son is 3 and he has had the same discipline since he was able to walk. He takes less time each time in finishing up requests and it very rare that I ever punish him because if I give him the choice of the punishment or his independence than he knows he would rather do it now and play then to sit and stare at nothing till he picks it up. Children understand routine and disciplines that make sense and they are more likely to behave with consistency. I did this as a teacher as well for 10 years and I was always complimented on how well my class behaved ,as I am when elderly people compliment how they were impressed with my children's behavior and they did not mind sitting in the table next to me while they ate. Its effort yes, its work yes, but your children and sanity are worth it. The dishes can go undone for a few hours if it means you can come up with a plan of action for your children to follow as well as you. Subs loved teaching my classroom because of how well my students behaved...and they were a full classroom of fourteen 2 1/2 to 3 year old's, then I did the same thing as a counselor to elementary children and I help many children get on track with their teachers with proper discipline actions. So you are wrong. If parents put more effort into the things that mattered, like proper discipline, taking time to teach their kids right from wrong without put downs and awful words, if parents put their kids before the t.v and before housework, their would be a way to be consistent with your child. People have kids so you could help them grow and love them, getting the chores done and yelling at them that they did something wrong wont make them a better person if they never learn the correct ways to deal with things. Constancy is an awesome thing because it becomes a habit and you end up doing it without any effort, so to say parents dont have time to add it in is ridiculous and an excuse for being lazy and uninformed. It only takes effort in the beginning to start a routine, then it becomes second nature.