Mom needs help

Post Reply New Topic

My son (12 years old with ADHD and NLD) has realized he was different since he was in 1st or 2nd grade. So talking to him about it was always easy. In fact, gaining the words to talk to him about it (after diagnosis) was like a godsend. I finally had a "reason" for it. He actually found it to be a relief because before he was diagnosed, he was so afraid he was a "bad boy" because he did things he knew he shouldn't do and couldn't stop himself.

My daughter (8 years old, mild ASD, in mainstream 3rd grade) has never really seen herself as different. Sure, she realizes she has strong school smarts and more problems with social smarts, but she always thought it was "normal" in that everyone has strengths and weaknesses.

She is starting to become more aware that her differences are not a part of "normal" differences and it is breaking my heart. We had to review her report card the other day. Her grade uses a 4 point scale. Basically 4 means above grade level, 3 means at grade level, 2 means "approaching" grade level and 1 is does not meet grade level. In all academic areas she gets at least a 3, with most scores being 3+ or 4. But in all of the behavioral areas, including listening and communication, she gets almost all 2's with a rare 3. Her face looked so sad. Then she asked "Mommy, do you think some kids get all 3's or even some 4's in this part of their report card?" I had to tell her yes. She looked so...sad. In the past she has told me that she tries to have a "normal life" and that other kids don't seem to have to try to have a "normal life."

I find it really hard to figure out what to say to her. Her brother strongly believes she has a right to know about her diagnosis, but when she wasn't aware of her difference, I really saw no reason to tell her. Now that she is becoming aware, I am finding it really hard to talk to her about it. Whereas my son always saw himself as "different," she has not. I don't want to shatter her self-concept or make her feel inferior.

Can you guys please give me some advice? What did your parents say/do that made it easier for you and what did they say/do that made it worse? Is there something you wish they would or wouldn't have done?

I think the sooner you tell her about her autism, the better it will be. You could also use positive examples while talking to her. Don't mention anything to her about Autism Speaks. Mention famous people who are on the spectrum instead. I don't have anymore suggestions, as I was never a parent.

CockneyRebel, I do not remember...were you diagnosed as a child or as an adult (I think it was an adult, but I can't recall for sure)?

I am really hoping someone who was diagnosed as a child and found out from their parents can talk about their experience. Because my son has always found the information helpful, he cannot really understand how it could be difficult for her to hear it. I'd like to get input from more than just him. (from a kid's perspective)

I hope you don't mind my replying too much. I was not diagnosed until adulthood, and did not feel much understood as a child. However, I have two daughters, one ASD one LD and I know what I was like as a young girl for what this is worth.

I think too that you could post in Kids Crater for advice from kids maybe to get more ideas.

Anyway, I feel that anything that is negative and confusing is much worse than that which has a path out of the confusion and problems. Your daughter isn't asking why overtly, she seems to be wanting better grades. So I would maybe mention the diagnosis and that it makes communication more challenging, then explain what you think you can help with (I think listening is a much easier target then communication so I'd focus on that) then ask if she would like to work on improving her listening grades once you have indicated to her that you feel (if you do) this is a reasonable target and something she can make progress with. And keep the focus on where she is, what she can achieve, what she wants, what you want. Not on a big picture. I don't see this as hopeless unless her goal is to get the same score on listening and communication as academics, and get that now. And that isn't realistic, she ideally can understand that she struggles with those and can work on improving, here is how, others struggle with division, or writing, or other things.

Sorry for all the words. I hope this helps some.

^^ This is the Tragic Demon of High Functioning Autism. ^^

As the Red Queen told Alice, in Through the Looking Glass, "...it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!"

Which is, of course, impossible and yet, you are left with no choice but to try, and fail, constantly.

What made diagnosis an epiphany for me, rather than a traumatic revelation, was the realization that my constant struggles were not the result of any flaw in who I am (which I had been told for years, often and loudly), but because my brain was manufactured to a different schematic than most everyone else. It's a custom configuration most people don't have.

That's a big difference - all my life I was accused of being intentionally difficult, when in fact, I was stumbling around trying to navigate the same course as everyone else, with a pair of Funhouse Mirror Goggles strapped to my head.

We don't deal with the world the same way neurotypical people do, because we do not see the world the same way that they do.

Our sensory volume knob is turned up to 11, ALL THE TIME. While their normal brains filter out a lot of unnecessary and irrelevant information, ours do not - so our minds are constantly juggling all the incoming data and trying desperately to sort it all out, while they stroll along whistling and relaxed, because that juggling and sorting is being done for them. Doh! Is it any wonder we always seem mildly lost and extremely frustrated?

Still, as difficult and trying as it can be, the view through these goggles is beautiful and fascinating in it's own right, and I wouldn't give them up even if I could.

I was diagnosed as an adult, but I am the mother of an 8 y/o boy on the spectrum. We recently had the talk about it, but I have the advantage of being on the spectrum too. So I was able to tell him that he thinks a little more like me than he does his dad, and was able to point out the advantages of being like us (more logical, more focused, better able to solve problems, etc...) and laid it out like a special bond we shared. What is her relationship with her brother? Would including him in the conversation help? I don't know how they relate with each other but having a real-life "mentor" rather than someone they can read about or whatever seemed to help my son because it meant he could ask me specific questions ("Do you sometimes feel so mad, and when someone asks, you can't find the words to answer?" "You bet bub. Why do you think I lock myself in my room sometimes?").

Waterfalls, I have taken your suggestion and posted in the kids' section. Thanks for suggesting it.

Willard, my son sees things much the same way you do. For him, finding out his diagnoses was a relief.

The way my daughter sees the world is beautiful. I am inspired by her, and in awe of all she has been able to accomplish. But she lacks my son's easy going temperament, and I am afraid she will be devastated by the knowledge that she has a diagnosis. She has always kind of seen herself as "better than" her peers because she is gifted artistically and academics come easy. I don't know how she is going to react to the knowledge that she is autistic. I don't know if I will know how to make her continue to see it as "just a difference."

She did ask me if there were other things, aside from having a "special helper" in pre-k (she had a 1:1 aide for 2 years) that made her different as a kid or a toddler. I did tell her she learned to talk later than most kids. And that she didn't learn how to point by herself. She seemed to handle it OK as she can point now and is actually advanced verbally for her age.

Sometimes I wonder if I should just not give her the label, but instead speak in vague terms related to her brain working differently.

Then I remember the day that my son came home from 5th grade and asked me if he was autistic. I asked him why he asked and it was because they were reading a book that had a character that was autistic and he recognized having similar issues. I would never want my daughter to think I was lying, or think that I didn't tell her because it is something to be ashamed of.

Your daughter has come a very long way and using the same language can help her understand how others see her, and how to protect herself. She probably has heard peers and adults talk about her more than she is able to articulate to you.

Perhaps there is another path, where you might help her understand autism as it affects a peer, rather than focusing on your daughter having a diagnosis, but including that she does as well. That could encourage her to take a compassionate approach to the peer, thereby encouraging self acceptance, too.

This is my son's account but I wanted to answer you. My son is an Aspie. I have a Masters in Psyc. We waited to tell him until it seemed that keeping it from him may be affect him negatively. I asked him to read a book about famous people who were autistic. He knew immediately that he was too. We talked about all the positive ways it has affected him. How smart he was, how he saw the world differently. We told him that although he will always have challenges, his diagnosis is integral to who he is. That we wouldn't change anything about him.

It went pretty well, but I don't think there is a perfect way to approach this conversation. All you can do is be supportive , responsive and expect the kids to have mixed feelings. Keep the dialogue ongoing because in my opinion it is not a subject which can be handled in just one talk. We all have good days and bad days, so somedays we feel good about ourselves and other days we are hard on ourselves so it makes sense that the comfort level with the diagnosis is inconsistent.

This advice is strictly from my experience. But I am not an expert, just a mom. I think you will know when to tell your child. They start asking questions, and you start struggling with should I tell them. Pretty soon the answer becomes clearer.

Thanks, BirdBrain's mom!

Now that her report card is out of her mind, she is no longer asking questions. On a purely selfish level, I feel relieved because that means I have more time to figure out what to tell her.

It's funny, when she was first diagnosed, I was very strongly in favor of telling your kids and could not understand why some parents found it difficult, especially since telling my son was so easy and such a relief. Guess it's another one of those times in which ignorance is bliss and it makes you unfairly judgmental of others.

Another thing you can do that may help you, give yourself opportunities to see your daughter interacting with peers. Maybe visit school if you can find a reason, too. That way, if you see her looking confused or if she is isolated, you'll be able to maybe help with that. Maybe go around the label you aren't sure you want to use and think about the concrete stuff that might bother her.

I grew up trying to figure out how to look normal. Hopefully you can help her understand herself in the world without her feeling she has to pretend. With or without diagnostic labels.