That moment when YOUR child becomes the 1 in the statistics

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My friend went into a profound depression after her 12 year old was diagnosed with ASD. Bonus round was her husband left her a month after the diagnosis, because he couldn't be bothered "with a freak son who was going to make his (the father) life a living hell."

So...I had no problem with the OP post. I've met more parents who had the above reaction than, a shoulder shrug.

Maybe they might not tell YOU, the person with ASD, all of that angst, but they tell other people. I've been on the receiving end of those phone calls with three different friends.

You dump on others, and hold it together in front of the kid, teen, whoever.

I really do apologize. I was trying not to remark in my first post, but when I saw the other community members seem confused, I thought I should explain why. One thing you will realize pretty quickly: people with ASD are blunt. VERY blunt, and I made a snap judgment that it might be better to address it outright. I may have been wrong ...

You actually have a beautiful sense of language. But that is also what seemed confusing; people who are in distress don't normally write poetically. People who have just had their world rocked don't normally have beautiful prose. Looking at the patterns in language is normally one of the things people with ASD are actually good at, although of course it is an imperfect art. Your writing is, actually, too good. Weird to say it. And we can be a suspicious lot: plenty of people have come onto these boards pretending to be something they are not in order to advance some agenda at the expense of the ASD community.

I do want to reassure you that things with your son will, most likely, be fine. Some of the first things I wrote earlier are the most important: you have been given keys. If your child got to this age without a diagnosis, he is obviously functional. You do not have a child that is destined for an institution. I consider that highly, highly unlikely. He just has some road blocks and things to learn. You have some things to learn. Take the keys you now hold and learn them.

Yes, you do have to mourn the loss of the future you thought he would have, but that does not mean the one he will have won't be a good one. It just won't match your dreams. Instead of taking a decade to figure that out, the realization arrived in one swell swoop on your doorstep the moment you were given the label. And that can be very difficult to accept. I once dreamed my son was going to be a world class gymnast, given how flexible he was as a baby, and eager to sit and move at an early age. Turns out he is hypermobile and it is actually a disability. Yeah, those crashes can be hard for us as parents. But it was my false dreams that had to crash; he was still who he always was, and he's never had an interest in gymnastics anyway.

Everything we know about ASD makes so much difference for our kids. The prognosis is incredibly good. My son is a Junior in High School and I've watched him and a whole generation of special needs kids grow up. They are happy. They are fine. They are growing up and acquiring the skills they need to live the lives they want. There will always be exceptions, and I cannot promise that your child is not one of them, but I've seen some pretty impressive results. Advocate for your child and help him be his best self. It will make a difference.

And, seriously, we have addressed many, many of the questions your first post asked in previous threads. You can find them in our Parenting Index. What to tell your son. Everything.

Finally, I apologize again for not handling this more intelligently. I've been swamped and stressed myself - as many of us are - and sometimes that means we don't get things right for a new poster. We all have our issues, and today I guess that was mine: foot in mouth. Very sorry.

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Just because she can write well doesn't mean anything. To me it means she sat down and gave it some thought and wanted to make her post as good as possible and convey her feelings. Maybe she's just not comfortable enough to be casual yet. I think her post was just fine, and I get what she's saying. OP, do you write at all? I used to write an op-ed column and you seem to have that style. I've slipped into that style myself a few times on here, but that doesn't mean I wasn't being sincere. And so what if she's thrown for a loop and feels this way? Nothing wrong with that! I would too! Most people don't know diddly about autism and when they are told their child has it they automatically feel that it's going to end up the worst possible way. Of course she feels that way. Cut her some slack!

OP, I have AS. I was diagnosed in my 40s. I was bullied and picked on and made fun of as a kid, and if it wasn't for some friends I made in high school, I would probably still be living at home with my mother and a bunch of cats and wouldn't say boo to a goose and when I would say it I'd end up saying it wrong or trying to overexplain to the goose exactly what I meant by boo. The kids I had met way back in the day just thought I was shy and awkward but once they got to know me and I started talking to them they liked me and found out I was smarter than they thought (they knew I made straight A's but they didn't know I was actually smart and not just memorizing like everybody else) and that I had a wicked sense of humor. It took a few years but they forced me to talk to people and taught and taught me social skills and what to do and not to do, over and over and over. I was like their project but I was also a friend. It wasn't like they kept me at arms length and just wanted to fix me, I was part of the group, one of that crowd, a girl friend, a running buddy, etc. I still talk to those girls and the one guy in that group.

Now, I have a mild case and as I said up until my diagnosis, everybody including myself, just thought I was a little "off". When I found out, it explained everything. It doesn't mean he can't go to college. I've gone twice, but never finished because I quit the first time to move to DC and get married and quit the second time (different major so I had to start over) when I got pregnant with my first child. I've had many different jobs and kept them as long as I wanted them. I've never had trouble finding or keeping a job, but I did have trouble staying interested in one and when we would get to a point that I didn't have to work anymore and I was bored with the job, I'd just quit. I've dated as much as I wanted to, having the same troubles that NT girls have which is the usual "guy I like doesn't give me the time of day" thing from time to time and the "guy I like that asked me out turned out to be a douche" thing from time to time thing as well. I got married at 18 to an idiot, just to get out of the house and mainly because my mother hated him (lots of issues in THAT relationship with my mother but it has nothing to do with my AS, it has to do with the fact that she's got borderline personality disorder and I think she is a narcissist too, so she's basically batshit crazy and mean as a snake). I got remarried when I was 22 and I've been married for 27 years. I'm mainly a housewife, although I've worked from time to time when we lived in the city and we needed the money, and we have four kids 24, 20, 19 and 17, and I have friends.

I'm not sad from the AS nor am I lonely. I've never done the things I wanted to do in life like have the career I wanted or be rich and famous, but I never really put in the effort to try to have that career or get rich and famous. During the time I could have done that I chose different priorities and I don't regret it at all. I have done a lot of things in my life that I wanted to do, some of them risky and some of them are things that people would like to do but are too scared to try. I worked on the road for the carnival, I was a private investigator, I worked for a bounty hunter, I wrote a column for a newspaper, I've also done ordinary jobs that I just wanted to try out because I was interested in it at the time, like I got a job at a funeral home and started an apprentiship there to learn to embalm simply because I was interested in it and it was something I could talk my way into. Same with writing the column, I wanted to, I thought I could write ok and I called the paper and sent some samples in. I wanted to work for a vet once but not in the kennels and I talked my way into that too and learned to do anesthesia and some procedures and even cat neuters. Basically, unless he's really limited by the AS itself and it's showing, he's not gonna be all that limited.

Don't baby him, don't insist on a lot of special stuff for him unless he can't do it without it. Of course make home a place he can relax and have some things his own way, everybody needs that, but don't shelter him from the real world because if you do then he won't be able to function in it when he's out there in it, which he will be one day unless you happen to be immortal. Play it by ear. Teach him to stand up to the bullies and talk back and fight back. That's a HUGE thing. Running to the teachers when he's insulted or something won't win him any points in the popularity department. If he's like me and has terrible coordination and will trip over his own feet walking across a flat, clean, dry, well lit, empty floor while looking down and concentrating on where he's walking, then get him something to help him learn those skills. Some kind of lessons in some sports or even something on the Wii if they have it. Anything to help coordination. Help him learn to talk to people. Teach him to wait a beat before he starts speaking so his words don't tumble all over themselves when he starts. Help him learn to slow down when he talks for the same reason. Literally show him some of the things that most people just instinctively pick up or know, like when somebody says "how are you?" they don't really want to know, there is a correct answer and it goes something like "fine, and you?" Try to make sure he doesn't stand out any more than he already does. Get him clothes like his friends, make sure he has access to a computer and FB like the other kids and gets to see the movies, hear the music and play the video games the other kids do. Give him the chance to be as like them as possible. Help him think up some good comebacks for things the mean kids say to him. Thats important because if he doesn't have them already thought up, he won't have something good to say back. That was a biggie for me.

It's not the end of the world although it may feel like it to you right now. Tell him he has it and tell him to Google it and read about it. Let him make an account here at WP. The mods can remove this thread of yours if you want so he doesn't see it I'm sure. There are plenty of kids his age here, and even a section just for them. He doesn't have to tell his friends, and in fact it's probably best if he doesn't because at that age a lot of kids will think that any kind of autism automatically means mentally ret*d and they may start calling him that. If he tells anybody he should tell his best friend and then only if the friend needs to know. Most people don't know about mine, only my good friends do. They always say "Oooooh, THATS what it is! I knew something was off!" and we laugh and I say "Yep".

So, It's going to be ok. It really is. PM me anytime you need to. And for heaven's sakes, write however you want to. I enjoyed the post.

What rubbed me the wrong way was nothing to do with the style of the message. It was the content.

The hashtag autism speaks opening seemed odd--why connect a personal reality with all that marketing stuff?--But I do remember the long drive home from the developmental neurologist. I think I first showed up here wondering how common misdiagnoses are--because I honestly couldn't believe the diagnosis. And when I did finally begin to accept it, I had similar moments of thinking, "OK, this thing that I always thought of as something someone else has to deal with--now I am that person. But the thing is, as soon as I started to read the books the doc recommended, I began to suspect that this was also my story, my diagnosis.

And I love my son fiercely, completely, exactly as he is. There is nothing wrong with him! To the extent that neurotypical people think there is something wrong with him, there is something very wrong with them. I'm certain of that.

Maybe it makes a difference that I read this within a day of getting the diagnosis:
http://www.autreat.com/dont_mourn.html

Still a damned good message.

So, sorry if I was a jerk in my reply, Criss11401. I'm also sorry that you feel devastated that your son is who he is.

It sounds like he is smart, verbal and capable of doing a lot for himself. You get to focus on the places that he has more trouble with and you can probably help a lot. The first job is figuring out what those difficult areas are. Good luck!

I took it as she was trying to make a good impression and give her post a "hook" at the beginning so people would finish reading it. She's obviously got writing skills, and whether or not she's ever written professionally, I do think she's got a shot at it because a lot of people wouldn't think to do that on a forum. And maybe she did read some stuff at Autism Speaks and she got the idea from there, but so what? It's a resource for parents as well, even though some here don't like it. Lots of people like it, and lots of people like both WP and Autism Speaks. I know it's a sore spot for some people, but I have no beef with Autism Speaks. I understand that a lot of it is marketing and soliciting money from people and you aren't going to get money by showing people who are doing pretty much ok.

They pretty much encourage parents to feel like their kid has died--or is a scourge on the family that will ruin their finances, marriages and happiness. I think a lot of the people involved in that organization mean well and are OK, but the whole institution stinks, because of a rot that starts at the top. The video is hate propaganda. Autism is not a damned thief!

There are enough real problems that stem from challenges in social communication and social interaction, restricted, repetitive patterns of behavior, interests and activities and interests and sensory issues--we don't need slick propaganda saying the thing is a horror on the order of HIV and ebola.

Anyway--I'm sure the kid is great. I would love to hear more about him. His strengths and weaknesses, His interests. How he seems to see himself. I bet he knows quite well there is a difference between him and all the neurotypical people. I am sure his neurology will present some challenges for Criss11401, but is it a devastating tragedy??? Autism Speaks would say so. Criss may be feeling so today, but give it a couple of days perspective. Read a few books on subject and I'm sure the picture will get a bit clearer.

I'm not going to say it's no problem. I have surely had my dark hours because of it--but devastating? Hell no.

This may seem like a post about Autism Speaks, and I talk about that a lot, but the reason for this is to explain why I think the OP reacted as she did to her kids dx. I do think it's relevant to the thread, and I'm not trying to derail it or go off in another direction. I'd really like to hear from the OP about what she knew about autism before the diagnosis and where she got her information about it, because that's important too. I'm not in any way jumping on her for reacting like she did, I'm wondering if she, like me, only knew autism in the worst possible outcome and was expecting something horrible because of that and because of not knowing about the other forms it can take, which most people don't know. So please, don't remove my post as off topic. I think it's relevant to the OP and some of the other posts on here and important in this section because parents new to this may very well react like she did at first and it's important to find out why and what can be done to have more information out there in the general public so that "the man on the street" who has never been and may never be effected by autism in anybody he knows, is familiar with the information.

I think they are talking about severe autism rather than AS or milder autism. And I can see how parents would think autism like that is a thief, because to them it's "stolen" the child they had, or the way their kid was and the hopes they had for him. I can also see how it can ruin your finances and marriage when it's severe because of all the therapies and different treatments you try or do and insurance doesn't cover. Yes, a lot of the therapies seem ridiculous to some people, but if it's your kid and nothing mainstream is working you might be willing to try anything no matter how crazy it sounds. (I don't mean abusive or dangerous stuff, just out there stuff which usually ends up expensive). Remember the lady on YouTube with the teenage son with severe autism and who has self injurious behaviors? I think Autism Speaks is talking about people that are effected to that extent rather than middle of the road or higher functioning people. Even though i would always love my children no matter what, I would feel like it was a tragedy if they were diagnosed with something that would turn out like that kid. And no, I'm not talking about the lower functioning people here either, they can communicate more than just showing that they are pleased or displeased or are hot or cold or hungry or sick. I'm talking about kids who can't communicate anything except by you interpreting their reaction to something. I'm talking about kids who literally cannot do anything at all for themselves and will never be able to. Yes, I would think that was a tragedy the same way I would think it was a tragedy if my child was in an accident and got brain damage to the point where they couldn't do more than that either. Of course I'd still love them and do everything I possibly could for them and of course I'd take care of them. Even though I wouldn't love them any less, I'd feel that it was a tragedy.

People think of that when they think of autism usually. They don't think about kids who have it but can take some mainstream classes and just need some help at school. They don't think of adults who can get jobs in certain places that do hire handicapped people. They don't think of adults who live happily in group homes and take care of their own needs and maybe have a part time job or do volunteer work and are living their lives. They sure don't think about AS at all. The word autism conjures up the worst possible outcome. It won't kill your child, so it's not as terrifying as leukemia but it's still very, very scary I would think. The OP's kid is 13 and seems to be doing well other than some issues, so she doesn't have to worry about that outcome but without knowing much about autism to begin with I'm sure she's thinking "What if this is as mature as he ever gets" or "What if he can't deal with responsibility" and that kind of thing.

Me and you know about autism. So do all the other folks here. We know about it because we had to learn about it. It's easy to sit back where we are and say to people who don't know about it that it's not like that, and most people who have it are able to communicate in some way or other, and many people with it go on to do just fine in life and you wouldn't even know they had it, but people who only hear about it in passing and who only hear the worst case scenarios don't know that so it's what they think. Autism Speaks uses that image of autism only, yes. They should show milder cases and those who are able to do what everybody else does in life, but they don't. It is a marketing ploy because if they showed it as easy and showed it as not being a tragedy then people wouldnt feel the emotions they do when they see the commercials and they wouldn't think "Those poor kids, I'll send a check to help with the research" and thats what they are there for, to raise money more than to raise awareness. Even the name of it "Autism Speaks" evokes the image of a child who cannot speak for himself. It's done for a reason. It's the same reason the Humane Society uses abused animals and that sad song for their commercials. Most of the animals they get aren't abused and most of the money goes for shots and spay and neuter and putting sick animals and putting the ones down that they cant give away, but if they showed that not as many people would want to give, so the commercials make you think that any animal that goes to the humane society has been hurt and abused and is clinically depressed over it.

Yes a lot of people on the spectrum take those commercials personally. I don't. They aren't talking about me, or you, or folks with more severe autism who post here. The people they are talking about wouldn't be able to post here or anywhere. They pick the small amount of just severely severely effected people and use that image to raise money. Yes, I do think they could incorporate those with higher functioning levels into it, like show them and explain what therapies and help they have had to get to where they are now and that money for research would bring about more therapies like that to help people. I don't know why they don't do that, but maybe they will. They are probably not doing it because at the moment the money is coming in still and if it ain't broken, don't fix it. When it starts slacking off they will probably have their ad guys find another angle. Maybe that will be it.

Also, the general public that hasn't ever seen or been around anybody (that they know of) with autism does need to be informed about what it actually is and be shown the entire spectrum, not just one extreme end of it. A documentary like that would be great. Maybe some of the film makers here could work on something like that to be shown next April, who knows? Show the kids and adults who are like the YouTube lady's son, show people like some of the people here who are low functioning but can and do communicate and explain their needs and feelings well, show how they get through their average day and what therapy does for them. Show medium and high functioning people and have them tell the problems they had and what therapies helped them. Show people who pass for NT who you wouldn't know had it at all if they didn't tell you. Emphasize that it's a spectrum, because most people really don't get that until they are forced to. Show what it's like in some of the other colors of that spectrum and that it's not pitch black and blood red. Maybe if something like that were out there, and shown on tv and was received well then autism speaks might get the hint and try that tactic. Until they have a reason to change, they won't change because what they are doing now is working for them. It's bringing in the money for research, which is what they want. I'm sure they are also researching treatments and therapies as well as some mythical cure.

Until people understand exactly what autism is, and that it effects a whole lot more people than just the "special class" at the school or the people in the group home, parents are always going to react and feel like the OP did. It's a gut instinct. So, she reacted like any parent would who had only seen certain aspects of it. Thats normal. Autism Speaks uses emotion to get money, which is normal for any organization like that. You didn't see any of Jerry's Kids who were doing just fine thank you out there on that stage during the telethon, did you? You don't see mild cases of anything when somebody is trying to raise money. I think having Autism Speaks show the milder cases of classic autism and AS is probably not going to happen because it will cut their income, but that's not to say that somebody else can't make and show documentaries, specials, movies, write articles, give talks, etc about the real facts about autism. Thats how we get the info out there. We do it ourselves and we don't get out there and throw mud at Autism Speaks even if we hate it, publically, because it will make us lose credibility and look like we are just reactionaries rather than people who have an important message to get across. The sooner we, as a community, find a way to do those things, the sooner people are going to start understanding that autism doesn't equal being locked inside your head and miserable forever and hardship for the whole family even though there is love. If we find people in our own community who can make the movies and write the articles and give the talks, then we look like responsible and capable adults who are dealing with autism and doing a good job of it and we show them that we are not the worst case scenario. Look at Downs Syndrome. Up until there started being a few actors with it, people thought Downs Syndrome was a tragedy too. They had to see for themselves that there are levels of severity with it and that many people manage to have careers and normal lives with it. Nobody wishes for it, and nobody shrugs it off, but people aren't devestated by it as much anymore as they used to be.

So, until we get out there and show them who we really are and what we ALL can really do, low, medium and high functioning, parents are going to panic and feel like the OP did. They are going to buy into the fund raising rhetoric of Autism Speaks and think that it's going to be their life story. I'd really be interested in a sticky here for parents to tell how they felt when they found out, what they expected and where they had learned about autism and what they had learned about it before their kids diagnosis. I think it would be very helpful in coming up with a plan and ideas to get the message out there.

So, I've ran my mouth (fingers?) enough on this topic, but if anybody is interested in it feel free to create another thread, or even move this one to the start of another thread and label it "How you felt when you found out" or something. Maybe we can do something about it. Until then, the OPs reaction is going to be the status quo in those who have no experience with autism.

But here's the thing.

It matters in situations like this. The poor mom in the op has heard that her boy has big bad light it up blue disease and it's going to ruin their lives!

That message is so powerful that it is stronger than more than a decade of actual experience with the boy: giving birth to him. Watching him grow. Seeing him go off and navigate the world of the playground, preschool, kindergarten, elementary school, middle school. He is awkward. He has some trouble, maybe a lot of trouble. Maybe no friends. Maybe he monologues. But is he terminally I'll? Totally incompetent?

Did you know that well over 90% of all the human beings on Earth, from infants to the very old, are infected with herpes? But most people don't know it or know that heroes is a family of viruses only a small subset of which results in the painful sores of the STD most people think of when they think 'herpes.' it is highly probable that you; I and everyone reading this has herpes. Does it make a difference what kind? Yes.

I would love to hear from Criss what her son is actually like. What are his strengths and weaknesses. Can he tie his shoelaces? Does he have any friends? Is there anything he is really enthusiastic about?

The point is that putting a huge amount of money into telling people that autism is the worst thing ever is actually bad for people in Criss's circumstances.

For the rest of what you say, I agree with a lot of it, but it doesn't make what they do OK. Particularly not in these circumstances. What are they going to to help Criss and Thomas with all that money? Nothing. What they'll do is divert funding from things that might help Thomas to live a great life and funnel it toward research on preventing him from existing at all.

And they will keep telling Criss and Thomas that his mere existence is a tragedy and that is a problem.

[edited to repair irritating iPhone typos]

Last edited by Adamantium on 04 Apr 2014, 9:28 am, edited 1 time in total.

I'm sorry Criss that you encountered such a rough start to this forum and during a very emotional time in your life.

I think your writing seemed very polished and it was hard to tell if it was a published article that was cut and pasted.



Anyway, I am sorry this is a very rough thing you are dealing with.

Here is a Ted Talk by Andrew Solomon that I find wonderful that pertains to parenting children who are very different from you. He wrote a book called, "Far From the Tree" that explores many differences in more detail (autism is just one of them).

http://www.ted.com/talks/andrew_solomon ... transcript

I still do not understand what responses the OP was intending. I was not offended by the Autism Speaksish vibe b/c she is new poster and I was waiting to see what came out of it. The problem with the essay format is that is not clear what was expected from the reader. I can't (I still can't )tell if the poster wants empathy or constructive advice or just wanted a forum to get her thoughts out or even if it was meant to stand on its own as a statement due to precise connection with a particular day.

I was not intending to offend by noting that the post confused me. I am just trying to figure out if the poster wants constructive advice.

The first thing you do is STOP.

STOP blaming yourself.

STOP making predictions for your son's future.

STOP (easier said than done, but don't talk to your son about this until you do it) STOP PANICKING.

STOP listening to the long list of "early intervention is criticals" and "can't/don't/won't/will never." STOP.

He is still your son. The same person he always was.

If teachers say he's wonderful and doing fine, then believe me, he's wonderful and doing fine and has every reason to expect to be able to access whatever kind of future he wants.

Hang on to that, though, because middle and high school are THE WORST YEARS. They're bad years for anyone (would YOU do it over again, other than at gunpoint??) and they're worse years for a kid who doesn't fit in, doesn't have a whole lot of peer support, and ends up bearing the brunt of everyone's insecurity.

The one thing he DOES NOT NEED in the next about five years is a parent telling him, "You can't." "You will never be able to date/get married." "You will never be able to go to college." "You will never be able to hold a job." "You can't, you're disabled." Can you see how that's a recipe for despair?? Look what it's done to you already-- and it's not your life in question.

What he DOES need:

Parents who accept him the way he is.

Training in organizational and time-management skills.

Someone to point out his strengths and help him make the most of them.

Training-- loving training, for his sake, not terrified training for the sake of what people will think-- in when to speak, what to say, and when to shut the hell up for his own good. He's entering the phase of life when LIFE will be more than happy to pass this training out, in the most unkind way. YOUR job is to teach him to think before he speaks, and to think accurately enough that he can at least see himself learn.

I have a whole bunch of stuff to say, and most of it is, I hope, more compassionate and reassuring. But I have to take my 4-year-old to preschool now.

Catch that?? I used to be your son-- seriously, other than the failing tests part, he sounds a lot like me at 13.

I was 19 when I got an unofficial diagnosis, and 33 when I finally got an actual diagnosis and some therapy other than that provided on the street.

And this morning I packed my husband off to work and put two kids on the bus. Now I need to go deal with my baby and my preschooler...

...thus implying that I did, indeed, manage to build a life for myself.

DEEP BREATH. PLEASE, FOR HIS SAKE AS WELL AS YOUR OWN, DO NOT BELIEVE ALL THE s**t YOU READ!! !!

Look-- You can give a big fat middle finger to #LIUB for the amount of pain and terror you are in right now. You actually know A LOT about Asperger's right now-- you have spent 13 years raising it already, and if the teachers keep saying he's fine, you probably did OK. But Autism $peak$ (most of us really, really, really don't like them around here) has spent millions of dollars to make you discount a lot of what you know and make you believe what they think instead.

So-- flip Autism $peak$ a big, fat, mommy bird. If necessary, scream something like, "I love my son, you f***s!!"

Change the channel every time their commercials come on.

Or think, "Autism speaks, all right. Ours says, "I don't wanna get off the computer!!"

Those statistics your child just became one of-- Honey, they're only half real. Statistics can say ANYTHING.

People with Asperger's aren't supposed to go to college?? Then why do they call it "The Engineer's Disease?" Why does Temple Grandin refer to NASA as "A sheltered workshop for people with high-functioning autism?" Why did two thirds of the tenured faculty of the English Department at West Virginia University (where I went, however foolishly, to college) probably qualify for a diagnosis??

People with Asperger's never get married/have kids?? Ummm, then where, precisely, do all the little Aspies come from?? Personally, I came from my father and my mom's father. Both of whom, obviously, got married and had kids. My dad got divorced, and some of it was because he was an Aspie, and some of it was because my mother was a silly little girl (who, I note, ended up begging him to let her come back).

To look at a different statistic-- People with ADHD certainly aren't supposed to have any academic success, right?? They're not supposed to get through high school, let alone college. Certainly without a lot of drugs and therapy, they're not supposed to be able to hold a job. Am I right??

Well, please don't tell my mother-in-law. She's enjoying being retired from thirty years as a secretary, administrative assistant, or claims processor. She doesn't need to know she wasn't supposed to be able to do those things (although she really could use someone to help her finish tasks around the house now that Dad isn't around to scream at her any more).

Don't tell my husband, either. He really doesn't need to know that he shouldn't have gotten through engineering school. He really doesn't need to know that he shouldn't have seven years in the field and now be a PE (the guy who looks at the drawings and says, "Yeah, it'll work, and you can crucify me if it doesn't.") He just doesn't need to know-- his self-esteem is already low enough; if someone told him he shouldn't be where he's at it might just crash.

Don't tell my son, either. He just made straight As on his third-quarter report card, and only one bad grade for behavior (talks too much). Right now he was to be an astronaut firefighter ninja. Or a coal miner on Mars. I'm not going to tell him he can't. I'm deliberating whether or not to tell him there is no coal on Mars.

People with ADHD aren't supposed to be any more successful in relationships than people with Asperger's. Don't tell us that-- we've been married for 13 years, and they tell me our problems are pretty much normal married couple problems. Don't make him feel any worse-- his sh***y self-esteem is a much bigger problem than his ADHD.

He says the same thing about me. He gets really upset over the whole "People with Asperger's can't be good spouses or parents" thing. We have lost a lot of time and effort to me subscribing to that thinking. I'm an Aspie every day, but I am a much better wife and mother when I don't believe that s**t.

There are some great books out there that will give you a start. Tony Attwood is good, pretty good anyway. Temple Grandin has a couple of

Let's try this differently. OK??

If memory serves, other than the failing tests part, you are describing me at 13. One hundred percent. I lived, I turned out OK. I have not realized all my dreams-- at some point, I realized I was going to have to choose some and let others go, because being a PhD professor and having a bunch of kids were mutually incompatible-- but I am happy with my life. I was fortunate in that, for the most part, that was the only dream my folks ever had for me-- that I'd be happy with my life. And I am.

You can deal with the failing tests thing by teaching study skills. I had to figure it out on my own in college, and I did OK. Teach him to break studying down into a series of little tasks that he does every day or every few days, instead of trying to cram. Teach him to keep himself calm by talking to himself inside his head-- choking (panicking and therefore having working memory take a massive s**t) is the single biggest test-taking problem MOST people have.



Shitcan the what-ifs. Easier said than done, but-- Look, what ifs can eat you alive if your kid is perfectly normal. What if he knocks up his girlfriend in tenth grade?? What if he wrecks the car?? What if he gets hit by a drunk driver?? What if World War III breaks out and he dies in combat in Somewhereistan?? What if climate change is even worse than they think, and 20 years from now we're all living hand-to-mouth?? Keep telling yourself that the future isn't written yet, for any of us. Deal with today. The answer to "What if??" is "Then we'll deal with it." As my dad used to say, "We'll cross that bridge when we get to the river."



One day, and one need, at a time. Every kid has strengths, and every kid has challenges they need to get over, and that's how you address them. You feed the strengths, and you address one challenge at a time, and you do it with a healthy does of, "Nobody is perfect." This is important, because it teaches empathy. Empathy for self, and empathy for others (and if you want my opinion, empathy for others starts with having some compassion for yourself).

I would probably start with study skills, because you've said you have a smart kid who fails tests. That's something that will help him RIGHT NOW. It's concrete (Aspies love concrete-- really, my mind is a sidewalk ), it's straightforward, it's not really subject to perception, it's here-and-now and so are the benefits.

Then I'd teach him to keep the monolog internal, at least in public. At home, I talk to myself ALL THE TIME. Oh, well. At least my jokes are funny, and my kids have a really stellar vocabulary. My dad talked to himself all the time-- it was really useful for me because I could see his thought process, and I used that to learn some coping skills of my own.

Then I'd teach organizational and time-management skills (and this will dovetail nicely with teaching study skills, because other than practice and mnemonics that's pretty much what study skills are). My folks had no flippin' clue that they were raising a child with Asperger's. I was 16 when Asperger's hit the DSM-- they had no way to know. I turned out OK. If I could go back and change just one thing, realistically, I would have had them teach me to keep myself organized and teach me how to plan my time. I would have had my grandma include me more in housework, and stop cleaning my room for me before I was 12.

I wouldn't even attempt to explicitly teach social skills. I just wouldn't do it. Most of the attempts people have made to explicitly teach me social skills have been disastrous. What I would do, is keep a running dialog with my child. That's what my dad (known around here as Saint Alan of Aspergia) did with me-- and it worked. "Why did that happen??" "Why did you do that??" "What might have worked better??" "What did you learn??" I learned most of the social skills I have from those running dialogs with my dad, or from similar dialogs with my husband and friends when I got older.

Social skills are going to be THE LAST thing to come. THE LAST. Until late in high school, the only social skill I had was SHUT UP and DON'T ATTRACT ATTENTION. The early teens are a TERRIBLE time to learn social skills, because frankly, very few teenagers have any REAL social skills.

More later. My MIL is on the phone.

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I see, from your later post, that you already know how to support someone with something a hell of a lot more disruptive than Asperger's. A friend of mine has SPD-- not as much of a PITA as schizoaffective disorder, but not exactly fun either.

Honey, other than the fact that you've got a metric ton on your plate and there is still only ONE of you, you've already got this DOWN. Hugs.

If he's a friend to the friendless, he's already learned where to look for friends-- in every nook and cranny, and under every rock. NOBODY has lasting friendships in middle school. I'm a complete anomaly-- I still talk to one friend from middle school and one from high school. As long as he learns (preferably younger than I did) that NOT EVERYONE is your friend, and learns (again, preferably younger than I did) not to let people take advantage of him in exchange for companionship, he has every reasonable expectation of picking up social skills on his own and surrounding himself with a small group of supportive people by the time he's, oh, 25 or 30 or so.

As long as he doesn't give up, anyway. My good friends were a long time in coming, and I can't afford to be picky about things like race and background and socioeconomic status and religion and age and gender (as long as they're not serial killers or Chester the Child Molester, should anyone really be picky about that stuff??), but they are the best friends anyone could ask for.



I would just flat-out tell him. "Hey, Tommy. You know you've always been a little different, right?" Believe me, by the time an Aspie is 13, we KNOW. Even if we haven't been bullied to no end, WE KNOW. "Well, great day! We've got something to call it! We have a description, and a name, and this is what it is. So, we have some more tools for how to think about what we want to do about it." The kid is old enough, and high-functioning enough, to have some agency in figuring out how to keep his own Asperger's dry in a barn.

He's going to have to decide, to a large extent on his own, what this means. He's at the age of having to do that. It sounds like he's actually already doing a pretty good job. Snaps, Mom!! How do you help him?? Keep an open dialog with your kid. For, basically, ever. Until death do you part. But hey-- you knew that, right?? Because that's basically called being a parent.

Something else I would tell him: "Tommy, there is A LOT of information out there about this. There are A LOT of opinions out there about this. There is A LOT of speculation out there, A LOT of rumors out there, just A LOT of stuff out there. Some of it is good stuff, some of it is bad stuff. Some of it is smart stuff, some of it is stupid stuff. Some of it comes from people who want to help, and some of it comes from people who want to hurt or to advance their agenda at someone else's cost. Just because someone says something about your condition, even if they have fancy letters after their name, doesn't make it true. And even if it's true of some people with Asperger's, that doesn't make it true of YOU."

Tell his peers-- At this stage, I WOULDN'T. It's just something else they can throw at him when THEY aren't doing a good job of managing their serious case of the Adolescent Nasties.

Prepare him for the fact that many of his hopes and dreams won't happen?? DON'T. Just DON'T. People figure out on their own that some of the things they want aren't going to happen. People figure out on their own that they don't actually want some of the things they thought they did.

If you want to prepare him for the fact that some things just might be out of his reach, teach him to perform a cost-benefit analysis. "I want XXXX. To get it, I'm going to have to ABCD. I'll have to give up MNO. Some things I'll be able to pick up again, some things I won't. Is XXXX worth it??" Teach him to do that, and to be realistic about it.

You don't do that in a day. Or a week, or a quarter. It is not taught in a handy unit study. You do it over a period of years. By, yup, maintaining an open dialog with your kid.



Go ahead. Pull the covers up over your head. Scream and yell until you fall asleep. Kick something. Throw something. Drive out on a back road, floor it on a straight stretch, and honk the horn really hard. Get drunk. This issue, along with the dishes and the laundry, will still be there tomorrow. Unless, of course, you can persuade the kid to do the dishes and the laundry.

But-- get out of bed in the morning. Don't crash the car. Don't drink and drive. Because this story isn't written yet. It's only getting started.



Do these things. You will figure it out.



Don't do these things. DO NOT DO THESE THINGS!! He will probably learn more in a general education classroom, and without an aide. If I'd been diagnosed and given special ed, I would be up the proverbial creek. Tell his teachers what's going on. Talk to them about a behavioral support plan, a lunch bunch (though it sounds like he's got one), and maybe some accommodations for test-taking so he can deal with whatever anxiety or working memory or executive function issue keeps tripping him up. At most, have them think about that and have them watch for bullies.

Other than that, scratch these things off your To Do list. No one knows yet what he is and is not capable of. The things he is not capable of today, he may be capable of tomorrow. Like I said-- teach him to analyze what prices he is and is not willing to pay to reach a goal, and to understand that some things (like following rules, and making an effort) just HAVE to be done. Other than that, no one will know what he is and is not capable of until he's been dead a week.



Scratch that one off your list too. He's a 12-year-old brother. He pretty well knows. If you're going to educate him on anything, educate him on compassion and the fact that everyone is different. "Yo, bro. Don't be a dick to your bro, bro!"



Scratch that one, too. You can tell, with just a little thought, whether someone is capable of something and just being a poopyhead, or whether they're in over their heads and need a little compassion and a little teaching. I can do it, most of the time-- and I have Asperger's. If I can do it, you can do it.

If it's something where he's in over his head and needs compassion and teaching, I'll give you two rules to go by. Rule 1: Home should be a safe place, where everyone gets to kick back and let their guard down, at least unless you're in Safety Plan Mode. Rule 2: He needs to learn to make as many adaptations as you do. That's how we get to be even higher-functioning. Your job, at this point, is as much about teaching him how to adapt as it is about making adaptations for him, and it's going to tip even farther in that direction as he gets older.

If you can balance Rule 1 and Rule 2, you'll be fine in the long run.



Depends on the book, hahaha. Obviously you can't chuck the kid, or the life. But you can get mad and have a tantrum. Meltdowns aren't just for autistic kids-- everyone needs to have a good meltdown once in a while. It's called "letting off steam." No matter what BS people feed you about being happy and upbeat all the time, EVERYONE has a meltdown once in a while. If they don't, then they have a BREAKDOWN eventually.

Last edited by BuyerBeware on 04 Apr 2014, 1:36 pm, edited 1 time in total.

Wow BuyerBeware, what you said was really good. You actually motivated me. Are you sure you're not a motivational speaker?

Obviously I had no clue that referencing that other organization would stir such strong emotions. I would definitely not have mentioned it had I known. So seriously, I apologize for that. Lesson learned!

Let me give you some of the back story. Maybe that will clarify a few things. I'll forewarn you - I do tend to be long winded and probably too descriptive.

Thomas is my child by choice. I've been his primary caregiver since he was 4 years old. When I made the commitment to be his parent I made it knowing full well that kids don't come in one size fits all packages and that there would be bumps along the road.

Thomas is a great kid. He is kind and compassionate. He's the kid who sits with the friendless and eats lunch with them. He doesn't let the unkind words of others get him down. He's always willing to help out. He gives 100% to everything he does, even when it's something he doesn't want to do or he's not particularly skilled in. He never stays upset for very long. He starts over fresh every day, regardless of how bad the day before was. Thomas struggles with making lasting, meaningful friendships. He still buys into the lie we grown ups tell our kids that everyone is your friend. He can't understand why some people are just jerks, because he chooses every day to not be one of those people.

Obviously you can only make inferences to my life based off the information I've revealed to you, and my original post displays the attitude of a whining, entitled mom who feels like her life is over because her child isn't perfect. Let me assure you that while that definitely described my state of mind at the time, that's not who I am.

I'm the wife of a wonderful man who just happens to suffer from schizoaffective disorder. I've spent countless days and nights visiting in the psych ward because his condition worsened again to the point it couldn't be managed safely at home. I've fought (and continue to fight) a system that preys on the disabled because they simply don't have the knowledge or the energy to fight back. I've educated myself on how to be an effective advocate.

I'm a school secretary by title, but that's only a tiny fraction of what I actually do. Most of my kids (and yes, I think of all of them as my kids) come from severe generational poverty and face challenges I can't even imagine just to come to school every day. I draw an incredible amount of strength from them - if they can go home to the things they go home to and still get up everyday and come to school ready to learn, my problems seem pretty small in comparison.

Both my boys are my pride and joy. We made the decision from the very start to never compare our kids to one another, as they each have their own unique strengths and weaknesses. I never want either child to feel as though his brother is a measuring stick to which he is held against, and have worked tirelessly over the years to instill in each of them that he should compare himself to himself, and not to his brother.

Now to answer a few of your questions. My original post was my initial gut reaction. I think when we lie to ourselves about our feelings, we do ourselves a huge disservice. The only way to push past it and move on with more productive things is to face the yucky, uncomfortable, ugly truth right in the eye, find out why it is what it is, and then conquer it. For me, that means writing it all down in black and white; putting it right in front my face where I can't push it aside or pretend it isn't there. Once I can see why I feel the way I do, I can cope with it. I can deal with my issues. And my post was full of just that - MY issues, not my child's.

And I am riddled with guilt and fear. Guilt that I've known something was a little off for Thomas for a very long time but I just ignored all the signs because I didn't want it to be true. Guilt that I've pushed and shoved and forced him to act and be a certain way because of what *I* wanted and not because of who he is. And I'm afraid that the bullying will never end for Thomas. That he'll always be the kid who sticks out. Fears that, founded or not, are overwhelming at times.

But I'm also full of hope. Hope that I will be a better parent now that I have a better idea of what I'm facing. Hope that Thomas and I will be even closer than we already are because I'll finally be able to accept that there are certain things his brain just doesn't do. It's not that he is choosing to not tie his shoes, it's that it's truly difficult for him. It's not that he's trying to get out of his chores, it's that he needs a different system to prompt him to complete them. It's not that he doesn't care if he's practically standing on top of the person in front of us in line, it's that he's got poor depth perception and not a great concept of the social norm of personal space.

I'm hopeful that I can help him adapt in areas he needs adapting while at the same time pushing him to reach his full potential. I'm hopeful that his teachers will finally listen when I tell them that he needs more time to write down notes or finish his tests. That I can get the accommodations he needs to be successful in enforceable writing and not be at the mercy of the teachers' whims.

Several of you asked why I thought I needed to tell anyone anything. Part of that is because in our family we don't bury uncomfortable truths in the closet and pretend they aren't there. My kids, while they don't have all the details, live with the reality everyday that their dad isn't always like the other kids' dads. They know that sometimes dad gets too sick to stay at home and has to go let the doctors help him for a week or two. We've had a safety plan in place since before they were old enough to remember things ever being different. Part of the thing that makes it not as scary for them is that it's not a secret. Everyone's family is different and that's ok. They are able to cope with hard things because they understand why they are the way they are. I can't expect Thomas to deny who his is because it makes me a little uncomfortable right now. Again, it's MY issue, not his. I can't expect his brother to cut him some extra slack when Thomas has just said something particularly blunt or hurtful to him if he doesn't understand it wasn't said out of malice and that Thomas doesn't understand that his intentions didn't come across the way he wanted them to.

I know we are going to be ok and that we'll be an even stronger family because of this. My moment of weakness was/is just that, MY moment and it's only going to be a moment. Now's the part where I pull myself back together and get on with it.

Well, it sounds like your kid is in a really supportive environment, so that's great. There's a book that I've found helpful: The Survival Guide for Kid's with Autism Spectrum Disorders (and their Parents) by Elizabeth Verdick.

Like I said though, knowledge puts you ahead of the game.