Help with understanding

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Hi Waterfalls. I feel pretty strongly about this, so I apologize in advance for how this will be worded. There is nothing wrong with your reaction. You are under no obligation to fake sorrow in order to impress these people. They are wrong to expect you to feel sorrow, and one of the best things you can do for your children and yourself is to be honest about your emotions. I would even tell them how you feel (that's just me!). I'm pretty solidly NT, and I don't feel sorrow about my children's diagnoses. And I can't stand it when clinicians expect that I would. That means that my children are picking up messages that there is something wrong with them from the people that are supposed to be supporting them. How twisted is that?! As a mother, imo, the best thing you can do is protect their self-esteem, and encourage m optimism about their futures. That means educating these clinicians about the appropriate response to a diagnosis. And that response is NOT abject despair for everyone.

The thing that jumped out at me in your description is that the psychiatrist and the special ed teacher are probably used to giving parents the diagnosis for the first time. Some professionals seem to live in a bubble where they forget that there are other professionals the child may have already seen.

Simply stating something like, "She was first diagnosed at age 3, so we've had a lot of time to get used to the idea of her having learning differences," might help reframe their expectations about how you should be reacting.

My advice - don't. Just explain that you don't see this as a horrible thing, and if they don't agree, that's their problem.

It won't be doing your kids any favors to see you trying to fake grief or concern. In fact, seeing that you aren't sad or concerned about their disability will probably be a positive for them. They will do better in life if they can accept their disability as a fact of life, not something negative, and learn to plan for it while not getting upset about it.

Thank you for all the responses. I have been feeling very alone and really confused as I tried so hard to fulfill expectations thinking I was supposed to try and try to look right. It seemed like I was missing a social piece because I have ASD and that if I just tried hard enough I'd be able to sort out the rules and act the way I'm supposed to and people would be satisfied.

What I am getting reading everyone's responses is that this might not be some mysterious NT thing I have to try harder to figure out.

I think that's a good assessment. It's important to remember that NTs can act in all kinds of ways that are irrational even to them, too.

I don't have much advice, but I would like to say that I'm NT and I don't react with deep sorrow whenever I see people who work with my kids. I don't think there is an expectation that I would with our current therapists- because they know me and they know this isn't my "first rodeo". My kids have been in the system for about 12 years now so I would have terrible coping skills, if I was still wallowing in grief.

If you don't mind my asking, what do they do that makes you think your reaction is wrong? I know lots of NTs who take autism in their stride and don't cry themselves to sleep over it, which is why I'm wondering what you're doing that's so strange or what they're doing that makes you think they think that.

Part of it is I'm just used to watching for signs I'm doing something wrong. For example, eye contact is tricky, and I sometimes am not looking at another person, or if I do look at them, I may forget to look away. Or I may be enjoying a conversation and extend it beyond what the other person wants. So I have taught myself to look for signs of discomfort in the other person and then scan what I'm doing that might be contributing or problematic. These things seem appropriate to me for social and work interactions, though they are certainly a tremendous amount of work that sometimes is quite overwhelming. But makes me vulnerable to thinking I'm doing something wrong anytime someone wants something from me, anytime someone is pushing. So for example the last meeting we had an administrator was being difficult for whatever reason, my daughter was in the room, I was asking questions of the unpleasant administrator, she wasn't happy with me, I persisted in politely inquiring about the negativity she was producing because it seemed necessary, felt I was reacting too much emotionally on the inside, felt uneasy violating the administrators social expectations, but felt it simply did not seem right to be a complete wimp or fall apart while my daughter watched because then, how will she advocate for herself without seeing me and others show her she matters? It wasn't about winning, it was about showing her she is important and that I her mother believe this and am asking that others treat her and me with respect even if they disagree or are unwilling to do something. But it was and remains almost physically painful that I know I violated this administrators social expectations. It's hard to explain very well, but when you have to train yourself to watch for and respond to others social expectations, it's hard turning it on and off according to circumstances.

I don't know if I answered your question. There is a look of disapproval/questioning/confusion that people get on their faces. And they may directly tell me. Mostly it's that look. That's what makes me think my reaction is unusual and wrong. Sometimes I know my reaction may be unusual, different and something to modulate, other times it might be unusual but ok, and other times the person may be trying to get away with something that legitimately deserves to be stopped.

What I got from reading everyone's posts is that my reaction isn't strange as far as I can tell, it is very typical, very normal. Though I don't do eye contact in a completely typical way, especially if I am upset, and if I don't have a table to keep my arms under and am upset, might flap my arms a bit, also tend maybe to overdo the normal response a bit, like trying too hard. I'm not honestly certain of course what would look strange. Because as far as I can tell, on the inside, there is nothing strange or different about me at all. I just know that generally, people see me as off. Often as likeable, but not quite polite despite thinking I am sweet and nice. Sometimes as not quite real, I think because I can't do or say things without at some level really meaning them. Naive and jaded at the same time. And I don't think people like contradictions, they like what is familiar that they understand. And that isn't me.

Last edited by Waterfalls on 14 Jun 2014, 10:31 pm, edited 1 time in total.

Hi Waterfalls. I'm sorry to hear that the clinicians aren't making this process easier for you. But, I want to give you a pat on the back as a fellow mother. Sometimes it's necessary to override someone else's social expectations. This holds in plenty of situations, but especially when you're a parent advocating for your child. Supporting your child is a part of their "jobs"; it's their work, not necessarily their missions. Along with that come priorities which may not be consistent with what your child needs. Maybe they need to manage a budget, or are otherwise stressed about the requirements of their jobs. That could translate to confusing facial expressions as they interact with you, because they are thinking of priorities that don't 100% align with yours.

Either way, that is none of your concern. You have the right to your feelings, and to advocate for your child as you see fit. If I were you, I would turn down my "social situation reader" a bit, or maybe just turn down my internal "appropriate social response" calculator a bit and just go with complete authenticity in your advocacy. We all, NT or ASD alike, have to work sometimes to produce the appropriate social response that will engender acceptance. In my view, when it comes to your children, the obligation to conform is greatly lessened. Good luck and you sound like a GREAT mama, btw!! !

Waterfalls,

If they are difficult, they will continue to be difficult and would be so even if you presented as NT. Lack of eye-contact does not even necessarily look weird if you are expected to be upset.

Concentrate on advocating for your child. That is the main thing.

I generally can "pass" as NT. When I am around people who know a lot about ASD, I don't. Part of how I figured out I was an aspie was that one of the members from my son's original team all but told me I was, and it resonated. The ones with the most knowledge of ASD will see it, no matter how much you try to hide it, and if they are not understanding, then that tells you more about them than it does about you.

I guess I've not learned this---yet

This is one of the places I've gotten really confused. I understand now that when a new provider comes along, they may either want to establish who is in charge by telling me everything they won't do, which I knew before, or reinforce the issue is serious in case I'm not aware, which WrongPlanet posters have now taught me is just how it is---thank you all so much for that!! And the helpful and concrete suggestions that a) I accept my responses and be myself, or b) if I am up to it I can make "serious and concerned" expressions. This is just so very helpful to me to break it down this way. And that you all are letting me know my reactions are normal and valid, not weird and crazy. Even if I take a bit too long to say something or mess up the eye contact or even flap my hands and arms a little! That even then, I am entitled to sit at the table and talk about and advocate for my children, because sometimes, I wonder....

The taking others' perspective but not too far is really tough for me though. Like I am paying the psychologist because the administrator said my daughter who has AS needed to be reevaluated, however, she has been declassified from an IEP and now has a 504 Plan. So the administrator told me I need to do this, to arrange and to pay for. The psychologist said this is the school's job to do, but I got so scared of trusting them that I could not handle giving it back to someone who has already decided what my daughter shouldn't have without knowing her. It's just hard on me, this going up against someone who wants things a certain way, violating their clear social signals they want me to stop. Even getting the evaluation feels like a waste of time and money, as I know they don't want anything found or to need to do anything!

So I am getting overwhelmed trying to be understanding the school and the administrator have their budgetary concerns, and they need to follow the rules, and they may also simultaneously be afraid of getting in trouble if they don't follow the rules, and even of getting sued. Not because I want to hurt anyone, just these are the things people tell me are on their minds I am trying to be sensitive to. And up until now, if anyone has been angry with me, I have felt it meant I did something wrong.

I asked the question what if this new evaluation recommends something they are not doing, and someone assured me they would look at implementing any additional recommendations, but I'm already worried because I of course will want any additional recommendations implemented. I'm sorry to be so long winded! It's just I've always tried to accommodate others' perspectives by going along, and I've never learned to understand someone else's perspective without it being more valid than my own, that just isn't what nice people taught me. Nice people taught me to consider others' perspectives to be as or more relevant than my own, I think the presumption being that I used to have such trouble with conversation and social perspective that I needed to let go of my perspective and trust others to be more accurate. So I have taken that literally.

Thank you PDDTwinMom!

This seems like very good advice. Now I need to find a way to stop worrying how I look to the ones who know the most! Goes against all the survival rules I've learned for the world, but what you say sounds like a much more manageable way to live if I can do this.....