Happy Times with Asperger Kids and/or Parents

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Before we even start this story, you have to promise to have some compassion for Grandma. She doesn't come off very well in it, because there is no way to make her actions right, but she did the best she could in the situation with the tools she had available to her.

My mom died when I was 11. Nobody told me she was going to die. I should have been able to figure it out-- she had four open-abdominal surgeries, three rounds of chemo, and by the time her body gave up the ghost, she was a skeleton covered with yellow skin. But my mother's side of the family believes very strongly in a brave smile, miracles from Heaven, and the power of positive thinking. So, up until the day she died, they told me she was going to get better, and no one was allowed to say anything to the contrary (Daddy tried-- they threatened to terminate his visitation rights if he ever did it again).

Cut them a break-- How is it fair to expect them to tell me what they could not themselves accept?? I probably should have figured it out-- Well, I was a gullible, extremely sheltered Aspie kid. I did figure it out once-- I point-blank asked, they point-blank lied, I point-blank believed them. Cut me a break.

So one Monday in September, someone comes to get me from the office. "Your mom is really sick, and they're taking her to the hospital. Your grandma wants to know if you want to come home." Well, my mom being very sick and going to the hospital was, by that time, a pretty common occurrence. "It's OK. I'll finish the day at school."

So I get home. There's the preacher sitting in the rocking chair, Grandma sitting on the couch, Grandpa standing in the living room. Nobody's talking.

BeeBee looks at everyone, puts her hands on her hips. "Will somebody tell me what's going on here??"

Open mouths-- no explanation. Nobody says a word. BeeBee goes to her room, comes back with her roller skates. "I'm going out."

Open mouths-- no explanation. Nobody says a word. BeeBee stomps down the steps and out the door, upset and confused and determined not to throw a fit like a baby. People are yelling in the house-- OH WELL. Roller skating will feel good. Roller skating will help BeeBee figure out what to do. She's thinking she might even roller skate down the hill, to the creek, and skip some rocks. Maybe even wade a little bit. It's not cold yet. BeeBee is sure as hell not coming home until BeeBee knows how to handle this situation.

Grandma comes boiling out of the house. "YOU GET BACK HERE RIGHT NOW!! ! WHAT ARE PEOPLE GOING TO THINK?? DON'T YOU EVEN CARE?!?!"

"Care about WHAT?!?! I WANT SOMEBODY TO TELL ME WHY EVERYONE'S ACTING LIKE THERE'S A BOMB IN THE BASEMENT AND THERE'S NOTHING ANYBODY CAN DO!! !! !! !" BeeBee throws her roller skates on the sidewalk and stands there shaking.

"YOUR GODDAMN MOTHER'S DEAD, YOU SHITASS!! THAT'S WHAT!!"

Hysterically bawling BeeBee. Humiliated BeeBee. Betrayed BeeBee. Angry BeeBee. Hurt, confused, extremely upset BeeBee. Welcome To Meltdown City: Population 1. Adolescent screaming like a toddler. Inconsolably. Non-verbal. In the middle of the sidewalk. For over an hour. People crossing the street so they don't have to walk by us on the same side. Neighbors looking out the windows (probably). I'm sure phones were ringing all over town.

Grandma goes back in the house. Hey-- there's a preacher to serve coffee too, a funeral home to call, all kinds of stuff to do. Expectations must be met. Thank God it occurred to someone, somewhere, at some point in time to Call Her Father.

Saint Alan pulls up. Sits down next to the screaming BeeBee. Sits there, for God only knows how long, muttering, "Shhhh, baby. Shhhhhh. It hurts. I know it hurts. Shhhhhh." Eventually BeeBee crawls into his lap. Eventually BeeBee stops screaming. Eventually BeeBee stops sobbing. Eventually BeeBee is merely crying. Nonverbal-- but at least she's using nonverbal communication. If you ask a yes or no question, she will at least swipe at the snot on her face and nod or shake her head.

Grandma comes out of the house. "Get her in the car. We're going to the funeral home."

Saint Alan: "Can I get her a pair of shoes??"

Grandma: "We don't have time."

Saint Alan loads a now silent BeeBee into the back seat, sits down beside her, and never lets go of the kid. All the way across town. The family arrives at the funeral home.

Grandma gets out of the car and walks in without a single word. There sits Saint Alan with his dirty, snotty, leaking, silent, shoeless child. "You want to go?"

Headshake.

"It's getting hot in here. It's airconditioned inside."

Headshake. Eventually he manages to get, "I. Can't." Eventually he manages to get out of me that I can't stand seeing my mother's body, can't stand the thought of all those people looking at me and saying nasty things, can't stand knowing that looking at me is going to upset them, can't stand knowing that I'm shaming my family, don't know how I'm supposed to be acting, can't do it and ain't going in there.

Somehow, by the time he gets all of this out of me, we're walking circles around the parking lot, around the building, around the whole damn neighborhood. Barefoot crying adolescent. Bearded man in bluejeans. We don't exactly look right. Someone somewhere called the cops on us.

So we're wandering around when this cop car pulls up, lights flashing. Cop jumps out of the car and shouts, "Let go of the girl!!" Daddy drops my hand. I start shaking. I start sobbing again. Probably the Grace of God alone that I didn't do a runner. God knows I felt like it.

Cop: "What is going on here?!?!"

Saint Alan runs his hand through his hair (all-time favorite stim). "Well, Sir--"

Cop: "I said WHAT IS GOING ON HERE?!?!"

Saint Alan runs his hand through his hair. "s**t, Sir. Her mother just died. I'm doing the best I can here."

Cop: "You expect me to believe that?!?!"

BeeBee: "LEAVE MY DADDY ALONE!! !! !! !"

Saint Alan: "Look, sir-- Why don't we all go over to the funeral home? Her grandmother will tell you the same story."

Cop (starting to believe this guy): "All right. She'd better."

So we walk back to the funeral home, cop following in the cruiser. Cop goes into the funeral home. Cop comes out. Looks at Saint Alan. "Sorry for bothering you, Sir." Looks at me. "I'm not going to hurt your daddy, honey." Goes to his car. Comes back with a lollipop and a package of tissues. Leaves.

Saint Alan and BeeBee go back to walking aroud the neighborhood.

Somehow, some way, by some magic, BeeBee shows up at the viewing the next evening wearing a pink dress. She sits in a chair and cries, won't speak to anyone, but she nods/shakes her head at the appropriate times. The next night, BeeBee shows up at the viewing wearing a brown dress. She gives one-word answers. The next day, BeeBee shows up at the funeral wearing a gray dress. She can sort of smile at people and answer in complete sentences.

It's going to be a long frigging time before she's OK again, but she's eating. Talking. She won't put down the book in her hand, but at least she's stopped staring blankly at the wall.

She goes back to school a week later. Some stupid teacher asks, "How's your mom??"

She thinks about Daddy and the cop. "Dead." She picks up her books and walks out of the room. She walks to her next class. She gets out her book and a sheet of blank notebook paper. She sharpens her pencil. Life continues.

Is this a happy story??

Yes, I think this is a happy story.

Why??

Because everybody lived (well, except my mother, of course). Nobody got arrested. Everybody was still speaking to everybody else at the end of the day. No search party had to be formed to scour Fairmont for a missing child. Everybody lived, everybody healed, someone was there to deal with one very hurt child.

It was a profoundly f**ked-up situation. But, when I remember it, I remember my father's voice. I remember my father's hand around my hand. I remember the slowly dawning understanding that we were going to deal with this. Together. And it was, somehow, going to be all right.

It is a happy story because there was happiness, and they did live. Because somebody, somewhere, probably didn't know what to do-- but he did what seemed logical, and he did kept trying until something worked. Because I am very, very, very, very proud of my ASD father for that day.

That's why he's Saint Alan.

This ^^^^^

Willard, I'm feeling this ^^^ exactly as you say it here. My infamous therapist is trying to make me see what happiness is, but all I can figure out is what you say in the quote above. Do you think this is a common AS trait or are we both in need of more psychotropic medications.

Why cry??

It is a happy story, even though the people in it are not happy at the time.

Two Aspies faced some serious s**t, serious s**t that would seriously throw a neurotypical family, without an instruction manual. Everybody got through it OK. There was happiness, and they did live.

Life does not always throw us happy things, but it turned out OK. There was happiness. They did live. There was not a shattered family, an acrimonious court case, a dead or missing or irretrievably lost child at the end of it.

It is still a happy story.

I think that happiness is all kinds of different things.

Happiness-- how you feel when you are engaged in your interest.

Happiness-- when you answer a question, and the answer is correct, and you like the answer.

Happiness-- when you know what to do, and it is something that you can do and/or want to do.

Happiness-- how you feel when things are OK. When nothing is wrong. Happiness is, in some ways, the absense of misery-- but it is not numbness. I am happy right now-- I am talking to friends (even if only in text). My spouse and daughter are playing a video game. My middle two are watching them-- my much-worried-about DS6 just followed an instruction. He is sitting on the couch-- not bouncing, not making huge stims, not chattering nonstop. The baby is sitting beside me destroying a box. My family is together, our bellies are full. I am the happiest woman on Earth.

Happiness is being quiet inside. Not dead, not a sucking black hole. Just quiet.

Happiness-- how you feel when something WONDERFUL happens, that is VERY VERY VERY VERY HAPPY. That is joy. Maybe ecstasy.

I read a research article a couple of years ago on this subject. I believe it may have been on the Tony Attwood site, but my memory may not be reliable. It focused on this issue and correlated it to brain development/function. By the article, the area of the brain responsible for emotions did function, but the area that dealt with sensing them was not so functional. I can feel some feelings, such as fear and anger, but I don't sense anything with regard to others, such as love and happiness. All such sensations, even things like hunger and pain seem a little distant as compared to others. My ASD son at about age 12 came to me once, distressed stating that he was incapable of love. He couldn't feel it. While we may not sense our emotions so well, they are still present as they effect our behaviour, and that's evident. I explained that love is neither a feeling nor a thought. Love is a conviction; a commitment of concern. I have seen that when he notices a family member in distress he's usually the first one to ask if they need help. That is an expression of love. Indeed he can love, but not necessarily express it in the way that most do.

When people ask how we feel, I think as they sense their emotions, they can't understand how it could be that we don't. They seem to think we are avoiding or lying, rather than be able to understand that it's like being handed a blank page and asked to read it. We're not avoiding reading it, there's just nothing written on it. I don't know if all AS people are like this, but I think it is a reasonably common trait.

I also think that as most people sense their emotions more, they use them far more in interpreting. Consequently, this can have a major influence in communication and relationships. Most people don't get out a piece of paper and write down all the times you were there for them; all that you did for them; all that you suffered for them; all the cost you paid for them, and add it all up to understand how much they mean to you. They tend to just use their feelings more immediately in an empathetic evaluation. Because we don't employ this mechanism much, we usually just end up being seen as some sort of fiend, while everyone else is wonderful.

What I have learned is that in relationships such as with my children, it is important to me that they have it for their welfare. Even if I never get anything back or are recognised for it, it's still worth it to me. With more equal relationships where there is an expectation of give and take, just don't ever enter into them. It never works, not matter how much I try. I'm not one of their kind and will never be accepted. It only ever results in loss.

As far as my children are concerned, I don't see labels. All children are hard work, heartache and reward. Even my NT child has given her fair share. She's broken her ankle across a growth plate, had several stitches, and needed her share of support through issues, just not the same issues as the others. She loves doing cartwheels, handstands, dancing and generally throwing herself around. She just hadn't learnt yet to think about where she was going to land before throwing herself in the air. My children are each full and complete people through their full range of difference, and I have a fantastic relationship with each of them. As far as my two younger girls are concerned, they own me, and I wouldn't have it any other way. There is no greater thing I've done with my life, and no greater thing I could do with my life. And nothing in the universe could ever make me wish them away. Each one is an immense privilege, this person that I get to know so well. I don't think my children will ever really appreciate how much they have given me. I was alone, and then I wasn't. The other 6.7 billion of them can go to hell. I really don't care.

You guys are really profound - it's a shame there's not a more balanced view like this in the media.

Before I came to this website, I never really thought of the concept of Aspie parents and Aspie kids, I guess because I was the only Aspie in my family, although looking back now my dad was maybe Aspish.

In the media it seems like there's an iconic image of a "happy pretty" family intruded on by the "ugly" one, which I guess is how I felt growing up. But Aspie families are really just families, like all others. Good bad, in between.

I hope you guys can leave some more stories and thanks for all of them so far!

I forget my children know me.

A friend of the two little girls came to stay for a couple of days over the holidays. Some of the kids were getting something to eat. My daughter said to my son “There's sauce in the cupboard, by the way.” To which I obviously commented “But we don't have a cupboard by the way.” (as in a way of passage). My daughter who said it snorted with laughter and said “Good one dad.” This poor little girl, who was sitting only a few feet from me, looked up at me with this face contorted by confusion and said “What?!”

I sometimes think that for NT's emotion is not just something they feel - its something they crave, like a drug or something. I'm not sure why this is, maybe they need constant shows of affection to boost their egos or to massage very poor egos. But the certainly do get very distressed if you forget to show them love and affection in a very demonstrative way.

I mean what is it with flowers for example? how does giving someone a bunch of colourful plants make them so happy? And why do people get so upset if you don't say the love word when its patently obvious that you do indeed love them?

I think this is one of the areas where a lot of the perceived 'problems' with ASD kids in some NT families come from. The NT parents are looking for that over the top display of affections that goes beyond what many Autistic kids are capable of. And because they are not getting their fix of emotional input, they become very distressed and see the child as being some kind of inhuman creature when in fact the child just perceives love in a different way. Those of us who can accept that our children simply have different ways of expressing love seem to be happy with that. The ones who crave constant reassurance through chocolate box displays of emotion are the ones who become depressed and see their children as unfeeling monsters!

My son will often say "I love you" then give a quick hug, but if you try to hug him back he will push you away for trying to smother him. To me that's ok because I know that when he is in the mood he will give the best cuddles in the world. To many mothers that would be a source of extreme distress and feelings of being unloved, even though the child has said "I love you".

It sounds to me like you see things like love and friendship as constants, that can be assumed, but most people don't see them that way. They see relationships as something that can be broken or die off, and thus are in need of constant nurturing. I'm a bit in the middle, myself, but I know that most people need something "more." Exuberant expression isn't over the top when it is an honest expression of how someone feels; and it isn't about egos. It is about maintenance, just as you have to water a plant or feed your pets. Once someone KNOWS that you respond differently and maintain differently they usually can adapt, but they have to be told that. Otherwise, they'll read into the non-action as holding meaning, because in the NT world non-action DOES often hold meaning. Non-action can be considered a "polite" way to distance yourself from someone you no longer want to be associated with.

Flowers to someone who likes flowers (they are pretty and they do smell nice) are just a simple way of nurturing a relationship. It shows you thought of someone. It doesn't have to be flowers. You would get the same effect bringing home a piece of quality chocolate for someone who loves quality chocolate. And it would create negative feelings to bring home flowers for someone you know is allergic.

My son was diagnosed almost two months ago right before he turned 4. When we went to the parents of children with ASD orientation put on by Kaiser, the speech therapist and social worker must have told the group of parents 6 times that your child wasn’t just a diagnosis and was the same child as before. They also made us do a strength and weakness of your child to remind us of the strengths. All but one of the parents had HFA or Aspie kids and most were as perplexed as I was. Not even the parents with the lower functioning child who couldn’t walk yet, seemed to feel it was a disaster or had problems finding strengths. All the parents spoke about their kids the same way everyone speaks about their kids, with pride, love and a bit of exasperation at times. Some were having a bit rougher time because of meltdowns, but they all seem super happy with their kids. I adore my son and he make me a much happier person. He is happy, funny, loving and wonderfully quirky. I smile and laugh more than I ever have in my life. He has issues, mainly with speech and focus and it is my job to help him in these areas. All kids have weaknesses and areas that need to be worked on.

Working in a hospital, I have seen children and adults that are extremely disabled by ASD and I could imagine it would be very traumatic for those parents. You see kids that you know will never be independent and eventually will get to be too big and their parents too old to care for them at home. It would be devastating to know that someday you would have to let go of your child to a home. On top of that you would not know for sure that your child knew how much love you had for them or receive the love back. I think because of the wide spectrum that people just assume it is a disaster and a struggle. It will be up to us to make sure people know that isn’t always the case.

No I don't see adult relationships as being constant - I have too much life experience for that. I know enough to get that for an NT non-action can mean a lot, I don't truly understand it, but I know it. I also know that you have to work at a relationship to keep it going. I've bought my wife some pretty awesome birthday and xmas presents over the years (though rarely flowers), and even took her to venice for valentines day. But I do still see many NT's as being very needy when it comes to emotional reinforcement.

But it was the children I was primarily talking about - not the partners, wives etc, but the little ones with ASD.

To me the love between a parent and their child is a constant, you might split up with your partner but the relationship between you and your child is always there (unless you become abusive or indifferent towards them of course).

And if you allow yourself to become alienated from your child because they don't show affection in the way you would like then whose fault is that? I'm not directing that at you personally by the way - that was just a general rhetoric question

We need to understand the actions of our kids so that we can see beyond those actions to the genuine love underneath their behaviours.

This is really not what this thread is about - BUT it's very interesting!! Thanks for bringing it up.

I think the part that you have to work on a relationship is pretty clear, although I see some relationships where it seems like one partner is doing all of the work - for instance have you ever seen a woman so scared of her husband that she does every little thing to please him, but he just ignores her needs? I'm sure there are marriages where it's the woman dominating that way too, but I've only seen in with women in the submissive role.

I always watch people around me and how their marriages work, I have yet to see one that made me think - Gee I wish I had that! When I was kid I used to think the most romantic thing in the world was to be in Jane Eyre's shoes, so it's kind of amazing I didn't end up married to a nut who keeps his wife locked up in the attic!

I also find it mind boggling that most people have friends in their middle age that they met in early grade school. How does one do that?

Also, parenting is no more constant than any other relationship - my mother doesn't speak to me and I'm far from alone in that.

I'm not sure I really understand this concept called love - I think it has a lot to do with power over someone or what they have to offer you. I'm not saying it's a bad thing, but it's not any better or kinder, nor does it lead to any good (by its mere nature, without the work you two talked about earlier).

I must admit I see my wife as being more like my best friend than as my lover, the love thing is more platonic with me than it is with her. Oh and I don't have any childhood friends either. I sometimes wonder why I ever got married at all - but then I see my kids, and know that I wouldn't have it any other way

I heard about the negative reaction to the Autism Speaks article but when I read it for myself I was surprised at how much I could *relate* as the parent of an autistic child. Autism is so varied in it's effects though that I can see how many people don't see it that way at all.

In my family's case, my son is non verbal and diagnosed with a mild intellectual disability as well as autism. We struggle greatly with issues related to communication, sleeping, eating, stimming, meltdowns and anxiety.

I know that he understands much more than he can communicate to me directly. We do have happiness as well and I love my son to no end but I wanted to share my perspective as a parent, that raising an autistic child has been a major challenge and can be overwhelming at times.

Oh, lord, I believe it's a major challenge.

I also believe it can be overwhelming about 57 times a day.

I'm overwhelmed weekly by three typical girls an a boy with some mild form of alphabet soup. Every parent I know is overwhelmed...

...and those are typical parents, with typical kids.

I absolutely believe it is HARD raising a child with ANY kind of major special needs. If I'm terrified for my wiggly, impulsive, very bright kid who can't seem to keep his toes separated from his tongue (literally or figuratively), I can only imagine how utterly terrified you've got to be.

In no way, shape, or form are you bad for being scared, frustrated, infuriated, sad, overwhelmed, or identifying with the crap that comes out of AutSpeaks.

But-- Oh, hell, maybe it's just my insecurities, since I've been bitten on the butt by AutSpeak's portrayal of all ASD. It's not the fact that they SAY it that upsets me. I'm really disturbed by the way they seem to paint it as ALL BAD, ALL THE TIME, for ALL ASDs.

Anyway-- **hugs**