Devastated - please help!

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I read in many places that the unemployment rate of AS individuals is over 80%. Now that's uplifting.
Unfortunately, even if you are THAT disabled as an AS person to not be able to hold down a job, society will never have the kind of sympathy for you that it would have for a person with no legs, no eyes or who knows what other physical impediment.

I mean...come on...we are constantly being shown little moralizing documentaries abut how so and so SEVERELY disabled person (no legs, no eyes, no hands...just a little piece of body left) is able to play the piano with his nose, cook with his hair, work with his belly button and run Marathons with his neck... all out of sheer will power and "put-your-mind-to-it"-ness (translation: "you bet you're not gonna have any excuse, you lazy whole-bodied good for nothin' that you are!)...and you expect society to be sympathetic to an AS - who appears perfectly normal in the eyes of everybody??..and whose "disability" you can only come to appreciate by getting a PhD in neuropsychology?

Not likely.

Also, I did read Attwood's book. I am not sure how I position myself "above the rules".
In fact, I am sympathetic to many rules in this world simply because they allow it to work.

Goodolddays said, "Going back to the affection between me and him: he has those excruciatingly selfish moments, will not give an inch, throws tantrums, sees how upset and unsettled I am...and then...just a few minutes later, when the storm is gone, comes to me as if NOTHIG had happened and wants his hugs and kisses, with no remorse, no embarrassment for what happened earlier - he just wants his hugs and kisses. So what am I to believe? He really acts a lot like he doesn't give a sh*t, yet he wants his hugs...it is unsettling to me."

This is just like my son. In fact your son sounds a ton like mine. When I first heard his diagnosis I didn't believe it because his behavior was so situational and confusing. Some have called this the invisible disability because the kids look so normal most of the time. But then a situation comes up and makes makes him crazy. Then he makes me crazy.

On disclosure at school, I would think about giving some kind of heads up if you choose not to disclose. Before I knew my son's dx, I would tell the teacher some of his quirks just so she knew what they were and how to handle them. His teachers have always accepted him, no problem. Last year's teacher, though, thought I was pandering to him. I had to explain but she accepted what I said.

Now, I taught another class down the hall (I'm talking about a classical homeschool weekly class). The first day, a kid came in to my class late and no one told me he had Asperger's. The director and mom both thought the other would tell me. It was a horrible first day for him because he was unsettled about being late and I treated him as an NT. Once I found out, I felt terrible and told the mom all the things I would have done differently had I known. We set up a playdate to get to know one another and went on to have a pretty decent year.

All this to say, I feel it would best for your son if the teacher knew something of what to expect, not necessarily the label. Let her know what types of things he doesn't handle well, how to handle his meldown should he have one, etc.

goodolddays. I can only speak for myself, but the reason I cannot hold a job where I work closely with people is because I make people uncomfortable. I honestly do not know what I do. Maybe I say things bluntly and offend people. Maybe I isolate myself from the majority of the workers and cause them to ridicule me. Honestly, no one has even given me a good reason to let me go (fire me). I always do my job, and many times, I do it better than most of the people there. The main factor in not being able to keep a job is how comfortable with me. This is something that NTs are going to have to get past, and that I need to work on. It is not impossible to get a job. I have actually spoken with a local employer about a position opening up and explained my delima. He is confident that I can be hired and do well. It is not a forever job, but it is a start, and a way for me to learn how to interact with people (and them from me). Yes. Now the unemployment rate for an AS person is high. But as I said before, this is because my generation never had any help. Who knows what the future will be 20 years from now when the kids who ARE getting help enter the work force?

So, GoodOldDays.

Before I comment, I do have a question. Several people in this thread have suggested that you read the book at www.ASDStuff.com

Have you done so, and if so, what did you think about it?

The OP might try reading Don't Mourn for Us by Jim Sinclair, an autistic adult. I encourage you also to read other writings by autistic adults, on the Internet and off. Try meeting autistic adults in your local area. We are here, and many of us would be happy to dispel your incorrect conceptions about autism and what a good life is.

I am diagnosed with AS, and from the sounds of it I have some similarities to your son. I was diagnosed in my late teens, as AS wasn't even a diagnosis when I was your son's age. And frankly I'm kind of glad that I wasn't diagnosed younger, or at least that my parents didn't have the kind of negative attitudes about me that you seem to have about your son. Believe me, if I were to find out that my parents posted the kind of negative stuff about me in a public forum that you are saying here, I would be extremely hurt and upset. I know I wasn't an easy child to raise...but then, my non-spectrum sister wasn't, either. When you signed up to be a parent, you didn't get a guarantee of some perfect child who wasn't ever going to cause trouble. Raising ANY child is a tough job. You signed up for it. Don't blame your son for not currently meeting your unreasonably high expectations. And for goodness' sake, don't make assumptions about him based off of what you've read. Try talking to actual autistic people.

And, yes, I think there is a serious problem when a parent expects her child to go to graduate school from birth onwards. A lot of people don't want to go to graduate school, aren't suited for it for whatever reason, etc. And that's perfectly okay. You seem to have an extremely rigid definition of what a good or acceptable life is. You really need to change that. Even if your child was completely neurotypical, there is no guarantee that he or she would want the same things that you want. I say this, BTW, as someone who is in graduate school myself! I know that the life choices I've chosen aren't for everyone, just as some other people make choices that I wouldn't make. I appreciate the intellectual stimulation of grad school life, but it is certainly possible to find intellectual stimulation outside of academia. Moreover, what I find stimulating isn't going to apply to everyone. I support people making their own choices, and it frankly upsets me to see parents who have such narrow conceptions of what is acceptable. Plenty of people can have perfectly happy lives without going to college. What's important is that people are happy with their lives, not that they meet some arbitrary societal standard.

I'd also add to this that graduate school can be a huge financial drain. The job prospects for people in my field are quite daunting. I'm okay with it, because I love what I do and I think I'm taking steps to make sure that I'm in a relatively good position when I search for a job. But I would never recommend people go to graduate school just for the sake of it. That would just exacerbate the employment problem for people with PhDs.

Being autistic doesn't make one lesser. I really, really hope that you do not allow your negative attitudes to affect your son. Because this stuff can really, really hurt, and yes, we can sense it. Your favortism of your NT daughter is kind of sickening, actually, and can end up really hurting both of them.

When dealing with an autistic person, you really need to forgo assumptions. Don't assume that because your son can do x he should be able to do y, or the reverse. I am a PhD student, in a pretty well-regarded program. I do well academically. I am also recently married to another autistic person. Yet I still have problems with meltdowns, and I find doing the laundry and keeping my apartment in any kind of order to be hugely difficult tasks--more burdensome than writing a research paper. My academic success doesn't make my other struggles insignificant...yet neither do my struggles mean that I am unable to have a relationship or academic success. Autistic people commonly have complicated abilities and disabilities. You need to find out your son's strengths and areas of difficulties as an individual instead of making blanket assumptions based on inaccurate ideas about autism. Your son is an individual, not a diagnosis.

So the only viable option you see is to hide your son's disability and pray that no one ever finds out or notices? Work with him in secret and in the privacy of home and leave him to tough it out in school alone? Do you honestly believe that no one will notice his differences? If they do treat him as an NT then they will expect him to react and behave to discipline the way and NT child does. What do you believe will happen when he does not - CAN not - react in the way that is expected?

I can't even wrap my brain around how may negative messages these actions are sending to your son.

I'm sorry but I'm not sure you understand how your opinions of AS and the futures of those with it is somewhat offensive to some of us. I'm afraid I agree with momsparky - this thread is making my blood boil and I'm stepping away from it before I say something I'll regret.

Tracker,

I am afraid I have not read that yet. I will, I promise and I will come back with comments.

I remain unconvinced that the "help" this officially dx-ed generation is getting now will make that big of a difference in terms of its future employment rate. I do feel a lot of these "treatments" and "services" and "help" are commercially driven.
If a child has an inherent nature that is not compatible with regular society and its rules of interaction, allow me to remain skeptical about the true long-term efficacy of what is being offered today (for money) as "help". Public schools also have their own interests when asking for SPED money from districts, states or wherever.

Would you be able to speculate what exactly about you or your behavior/way of interacting might make your co-workers uncomfortable? Have you ever tried to identify the actual behavior? Do you think it might be about appearance or the way you carry yourself (though this is highly unlikely to be a problem, in and of itself).

I am just asking because the whole thing sounds downright mysterious. Someone who sounds so eloquent and aware...who interacts so well in writing... to just say that they have a vague "quality" about themselves that puts people off? What could that be - in behavioral terms?

How could it even be possible for you and all of us here on this forum to communicate so well - and yet if we were to become co-workers tomorrow...we would find you weird and in need of firing? How can this be possible?

I am not arguing with you, questioning, doubting or contradicting you.
I am just asking myself rhetorically because if what you say is true (and I am sure it is), this is indeed one of the most devastating and mysterious conditions that have ever plagued human kind.

It might not sound like that big of a deal to many, but what you have described to me here sounds heart-wrenching to me.

Last edited by goodolddays on 09 Jul 2011, 5:33 pm, edited 1 time in total.

I understand your skepticism. I will tell you that I am seeing change. My oldest daughter has AS. Although she was recently diagnosed, she has already been "in the system" so to speak. She has received help and services I wish I had, and she has more opportunities to advance than I did. She is already able to advance to the appropriate level classes for her, and she is encouraged to participate in extracurricular activities that many AS kids avoid. She has several scholarship opportunities, and because she has a slower processing speed (not lower intelligence, but just how fast things process and come out of her head), she is allowed extended time on tests and the availability to take tests in a distraction free environment. I am not sure how working will be, since we have not tackled this for her, and I am only just looking myself.

I am sorry if his is sketchy... my 8 year old is having an "issue" and I keep coming back to this. Distractions. ugh.

Thank you for the recommendation, I will look into it.



Yes to the former. No the latter.

If the former is an "yes" (any child is tough to raise), then raising a child like my son is 1000 times tougher than the tough job of regular parents.
I certainly signed up for the regularly tough job. I did not sign up for the 1000 times tougher one.
Had I had the information I now have about this condition and had I been told I would have one of these children, then no I would not have "signed up" for the job. But of course, we do not know. I wish we did.
Again, I may breach orthodoxy here and I may sound like an "Aspie with no filters", as I have been told earlier - but really, what would be the purpose of filters in such a discussion on the net, on a specialized forum, where people are trying to make sense of reality without the added burden of "social desirability", typical of face-to-face settings?
Why would people want to be lied to here?



I am not. I am just witnessing behavior and it is not a pretty sight.
Example: today he was over at a neighbor's child. These neighbors (the child's grandparents) are life long friends of my parents and I am also good friends with his mother too. We only see them every couple of years or so because they live overseas - where we are right now.
We were sitting in the living room talking and they were there supposedly playing next to us. Having had the chance to watch him first hand in interaction with other children lately, I realized he is indeed a textbook case. He cannot really interact. He gravitates in his corner, extremely self-driven, obsessing over some kind of toy, on his own. If he does come in contact with the play partner, the interaction is short, unimaginative, completely uncooperative, without much substance and will soon fizzle or end in some kind of conflict. He has been getting worse in this department compared to where he was a few months ago.
He took a car toy, the boy said "no, you can't have this one" (this boy wasn't exactly the epitome of generosity and accommodation towards my son either...but guess what, this is how most children will be) , so... upon seeing that the boy didn't let him take the car, he took another car and hit him in the head with it. He had never been aggressive before.

When I asked him why he did that, he said: "but I liked the car and he didn't let me take it".
I get it. You're an AS, and it's all about you and what YOU want because your brain is wired "differently" and the world needs to bend. Good luck arranging this with the world.



My kids will not be forced to go to grad school if they don't want to do that. They will also not be made to feel bad about it if they consciously choose NOT TO. But that will be their choice when they get there. In the meantime, it is my turn to make a choice as a parent: and that choice is to expect them to consider graduate school as a very wise option for the future. If they will choose to reject my expectation whe their turn comes to make a choice - then, sure, I will absolutely respect that choice.

How many people do you know who end up in grad school and whose parents would have never expected them to do that? I am sure there are some but not many.



Who said they should go to grad school just for the sake of it?



If you were able to witness a typical day in my family's life, you would probably change what you wrote here.
What you read is a result of the frustration I feel when I think of how much love, attention, patience and energy I direct towards my son with so few results, and how little I end up giving to my daughter.
My son even told me several times that he thinks he is my favorite and that I love him more than I love his sister.

Now that's a little sickening to me - because the reality is I have no favorite in my heart. My daughter is the poster for an easy-to-love child. But no - I don't love her more. It just hurts me to no end that he tortures himself and those around him so much. Just because I depict how each one of them looks, acts and behaves in realistic ways, does not mean I favor one over another. My daughter really is easy to raise and easy-to-love by all NT people we know.
My son is not. This is just matter-of-fact, objective information and not a "sickening" indication of my favoritism. The fact that so many people here cannot make these distinctions is quite surprising to me.

Indeed, what comes off on the Internet is rarely a good representation of what happens in real life.



Congratulations for everything you have accomplished in your life and for your recent marriage. I wish you the very best of luck. Would you mind if I asked you how a grown-up AS meltdown looks like? What do you do when you melt down?
Have you tried to use your reason (obviously, in wonderful shape) to fight off the emotions/impulses? Thanks a lot.

I am sorry you have read things you do not want to hear.
I don't have an "opinion about the future of those with AS". I just have conclusions based on everything I read.
And I am also worried and scared about my son's future, especially seeing the way he acts.

I have been going through this at a very fast pace. I have not read everything, will go back and finish every page.
It sounds like a very good and honest book - the kind without "filters". I appreciate that.
I am not sure I agree entirely with the author's view that autism should simply be accepted exactly as it is without attempts on the part of NT people in the autistic's life to change anything about him or his behavior, but that is a complex argument.

The author did strike a huge chord with me when he talked about the basic commercial drive of "treatments", "services" and various therapies...which all ultimately translate into good parenting techniques that can be done/organized by parents, at home.

I will finish the whole book but now is very late on this side of the ocean.

I am the one who said you are not using any filters. And, while you may not believe this, this is not the place nor the medium in which to be discussing these issues so openly. These discussions should be done privately, verbally, with your immediate family (husband?) or a counsellor (but you have said you do not want to see one).

The Internet is forever.

As for your overall attitude, I am trying to be understanding, because you say you are frustrated. And I have concluded that you are using this forum to 'vent' (for better or for worse... but I digress). But some of what you say is very incensing.

Firstly - you did sign up for the job of mothering your son. Everyone knows that there are no guarantees when you have a baby. It's not like you can go pick on off the shelf and get a flawless model. Anything can happen. Autism. Cystic fibrosis. Down's syndrome. Dwarfism. Deafness. Blindness. Anything. So yes, sure, sucks for you that your son has AS.

Also, there is a big difference between a child having a "tantrum" (out of frustration, which AS and NT children all do) and a "meltdown" (where an AS child becomes overwhelmed and cannot control him/herself). It is, in fact, your job to figure out what sets off the "meltdowns", to figure out what his cues are as one is coming on, and to remove him from the situation. It is doable. But you have to take the time to figure it out. (Please note: when your son hit the other child on the head with the toy car - that is NOT a meltdown or anything of the sort. An AS child who has been told not to hit other children will know that this is wrong, and should be disciplined).

I will give you an example of a sensory issue that I had when I was younger (still have it to this day, but now I have control over it, so I can deal with it).

So, I'd be walking through the mall or grocery store or wherever with my mother, and I'd say "I have to take off my shoe and sock."

My mother had two options: 1) stop and let me take of my shoe and sock, or 2) tell me that we didn't have time for it right then and that I could do it later / in the car / etc.

Let's take scenario 2 first. I would have started to get upset and insist that I needed to take my shoe off RIGHT NOW. If I was ignored, I would start to yell and cry, and I would be unable to stop myself. Because, I NEEDED to take my shoe and sock off and nothing was more important than that. And my mother would have had a "situation" on her hands.

Now let's take scenario 1. I would have sat down on the ground, taken my shoe and sock off, and removed whatever small piece of lint / small pebble / thread / etc. was in my sock / shoe that had been pressing into the sole of my foot. Because, no matter how small it may have appeared to anyone else, in my shoe and against my foot, it felt like a giant, painful boulder pressing into me. And although it would look odd (a small child sitting in the middle of an aisle in the grocery store with her shoe and sock off, pulling lint out of her sock), I would then have put my sock and shoe back on, and we would have continued on our way.

You see, once the meltdown has started, removing the child from the situation (or removing the offending noise / smell / touch / etc.) is too late. So, yes, it is possible to avoid meltdowns in children with AS, you just have to understand their triggers, and accept that they may not make sense to you or anyone else. But if they make sense to your child, that's all that matters.

But again, meltdowns are not the same as tantrums. A child with AS needs to learn how to cope with frustration ("No, we aren't buying you that toy") just like any NT child. I don't know where you got the idea that AS children cannot and/or should not be disciplined? That's a crock.

All you can do is work with your child to get him well prepared to deal with the real world. He may never have an easy time of it, but so what? That's no reason not to try. And as for the official diagnosis - who really cares about that either? It doesn't change who your son is and what he's capable of doing. He is still the same little boy with the same potential he had before. And no, his potential is not the "average potential of those with AS," so stop looking at stats about unemployment rates in adults with AS. And keep in mind there are a lot of undiagnosed adults with AS out there who DO have jobs, and spouses, and children.

They are getting there
MRI studies:
http://www.webmd.com/brain/autism/news/ ... s-syndrome
http://www.a4.org.au/a4/node/267

Differences in Mitochondria:
http://www.sciencedaily.com/releases/20 ... 161521.htm

Synaptic pruning
http://www.science20.com/quotsciencequo ... onnections

Early days but these sorts of findings are small pieces of the puzzle.

You mean like these people?

http://en.wikipedia.org/wiki/List_of_pe ... _disorders