Devastated - please help!

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Kids with an ASD can learn just as kids without. This is not a disease or a mental illness it is a developmental disorder. Yes, when you have Autism you may have issues that a lot of people do not, but who doesnt have issues? Our kids are all different as it is a spectrum disorder. I have Asperger's and I have five kids, two with Asperger's and my youngest has Classic Autism. Sometimes I have more problems with my Aspie's (nickname for aspergers) than I do my Autie but she got a lot of therapy where as my Aspies did not.
It can be hard at first when you are uneducated. If you are reading anything about Asperger's or Autism and it sounds overly negative to you, find more positive things to read. Its all in your perspective and your son will know the difference between you thinking that he is damaged or believing that he can accomplish amazing things. Please look up Temple Grandin....she was severely autistic in the 1950's when they used to institutionalize autistic children, she did not speak until she was four. Her Mother never gave up on her and it is because of that that she has become the amazing person she is.....Dr. Temple Grandin.

Here is a quote from the very well informed Australian psychologist Tony Attwood (his books are a good place to look for info as well). This sort of goes along with what Nostromo was saying.

"You do not suffer from Asperger's syndrome, you suffer from other people"

In other words we are simply different people with some issues that other people are not educated about and do not understand. I think the Neuro-Typical (NT) world and the autistic world need to meet in the middle. We work hard to learn how to do the things the NT people do but the NT world is way behind in educating themselves about us. There is a new wave of people with Autism who are speaking out and trying to educate the ignorant people who want to call us and our children diseased/damaged and demand a "cure" or a refund! You can not fix what is not broken but you can teach, understand, gently push and assist your child so he can be successful in this world where he may be outnumbered but not, as Temple Grandin's Mother said....less!

Since its July 4th even though we are not all American here is just one more amazing Autistic child. Who, btw, did not speak until she was 3 like my daughter.


[youtube]http://www.youtube.com/watch?v=5FqCWuqsYqw&feature=related[/youtube]

I think some parents see this dx so horrible because everybody wants to have "normal" children. That kind of "low maintenance" children that will grow like weed, without needing much care from parents. I know some of those, and yes, sometimes I wish mine was like those kids, too. Then I think about how wonderful she is, all the things I have learned from her, and all I have grown thanks to her being the way she is. She is a miracle and a blessing. Yes, it is difficult some times, but I would not change her for a "normal" kid.



You have to take into consideration that AS is a relative "new" diagnosis. A lot of grown ups with AS never got a diagnosis and therefore help. And there are also a lot of parents who do not accept their children have AS and do not provide them the required assistance. There is also a lot of people who did get the diagnosis after a lot of wrong diagnosis, getting a lot of strong medications who affected them. And there is also the fact that there are different levels of AS, and not every person with AS has the same characteristics. Many people can have AS and also other diagnoses, like schizophrenia, depression, just to name a few.



Your kid is very smart. That is also very common in people with AS. My husband and daughter are also very intelligent with high IQs. But my husband cannot remember my birthday or what he needs to get from the grocery store. And my daughter needs to be constantly reminded of basic chores she does every day. My husband resume the problem this way: "We have no problem remembering the thinks we want to do, the things that interest us. Our problem is with the things you want us to do, the things somebody else wants us to do". With the appropriate therapy, helping him find his own motivators to do things, this will eventually become better. Until a couple of weeks ago I had to remind my daughter of every step of her morning routine or she will not do it. Finally we got her motivator. It's been 2 weeks of her doing things by herself. I am so surprised and relieved. But it has to come from him. I cannot be you. And it involves he to take responsibility of his actions.



You have to stop doing that. You have to get him a good therapist, and work with the therapist in the things that need change and how to do it. There are things you are not going to be able to change - some things you should not try to change. You need to understand some things are part of who he is, and you cannot (and should not) try to change who he is.



My daughter gets therapy via private therapist. We spend more in therapy that in household. But it is totally worth it. She's only 11 years old and she is becoming more independent each day. Until last year she was receiving therapy 3 days a week. This year she goes twice a week. I am confident next year we could be able to lower it down to only once a week.

Isn't this affair expensive? What does the therapy consist of, concretely?
Talking? Or also some life/social skills, etc.

The amount of therapy a child on the spectrum receives depends on the severity of the problems they are struggling with. Many AS children get speech therapy to help with some the language issues. Your son may not need speech therapy as much as he needs social skills training. They may also get occupational therapy for help with issues such as sensory integration, fine and gross motor skills, handwriting skills and so forth. You can also get behavioral therapy for any troubling behavior like meltdowns and difficulty with transitions.

I don't know which area you live in, but we have gotten most of our therapy through the public school system for free. Also, the more you read and educate yourself, you can help your child learn better coping mechanisms. You will also learn techniques you can use to help him cope for example giving him several warnings when things are going to change or starting to notice things that are going to set him off and get him better prepared for it.

Keep in mind that many posters here that have AS grew up with no therapy at all. So I wouldn't let the thought of therapy overwhelm you. Your son sounds like he has a lot of strengths, so he may not need a ton of therapy.

Just my two cents.

Adorable, with a great musical ear. I've always thought this is a very hard song to sing. We had an easier one growing up.

Take a deep breath and relax! Everyone here has had wonderful advice.

You mentioned that you are in the US. Your son is protected by the federal IDEA law and, if in public school, you need only write a letter to the school district and request psychoeducational testing. Provide them with your doctor's diagnosis. They will develop an educational plan with interventions that may be appropriate for your son. You will receive a full report of their findings. Your doctor, the school district special education specialist and even folks here can help guide you through what all of their findings mean. They will test his IQ, will evaluate him for learning disabilities and, with an Asperger's diagnosis suspected, they will likely evaluate him for social skills. Our government protects the rights of all children to an opportunity at a normal inclusive education despite whatever challenges they may face. For many kids, the only interventions they receive are provided by their school. Of course, there is much more available if you wish to pay for it.

I have a 9yo Aspie girl and I am quite satisfied with her progress through her school program. She plans on going to college to be a palentologist - even told her kindergarten teacher so! And there is no reason she can't be.

One of the things you will see repeated that I feel is incredibly helpful - find out what your son's 'special interest' is - that topic he seems obssessed about. Use it to help him learn - no matter what you or his teachers are trying to teach. One of the most valuable skills you can learn is how to watch him. Watch and learn why he does what he does. Most kids with Asperger's have quite concrete reasons for doing the things they do. Anything you are unsure of, lots of us here have already been where you are now. Just ask! Lots of us are more than willing to share.

Welcome to WP! And keep breathing! Big deep cleansing breathes. It's gonna be alright! Honestly.

How could they not, Ilka?
Indulge me in a little bit more self-pity here, if you will, but it is only now that I understood why I feel so INCREDIBLY exhausted after 6 years of parenthood. He has been a difficult child all along and I never understood why other mothers never complained about fatigue as much as I did.

My husband did not want a second child because of how difficult our son was (colic, waking up crying at night until he was three, having to let him cry it out because nothing else was going to do), etc. Then the attention problems started, losing everything, having to tell him every step what to do, and the horrible tantrums which I was just attributing to the terrible 2-s, 3-s, 4-s...hmm.

I insisted on a second one because I really wanted a girl too. Had I known about his dx I would NOT have gone for the second one - and would have missed out on the easier-to-love child in the WWW.
I will be honest and confess that I'd always dreamed of 2 girls and I cried when I first found out that we were going to have a boy. That state dissipated though after a week when I fully embraced the idea of having a boy. I was so happy when he was born and I poured so much love, energy and attention on this child, it's not even funny.

And then my NT little girl came along - and not just any kind of NT. With the way she is turning out, I am scared to death that my soul will eventually crush my reason and will end up loving this child more than my first one.
I know it is monstrous what I am saying but he makes it so, so hard and she makes it disturbingly easy.
She is like a bunch of walking sun rays with a killer smile that could brighten up even the deepest corners of Hell... and he is like a tornado in his best moments, and a root canal without anesthesia in his worst.

At three, she is 1000 times easier to reason with and deal with than he is at 6 - and the "burden" of her care has always been meager. She is always the one to give in when they both want the same toy - and NOT out of fear that she will be dominated by her almost 6 yo brother (she can VERY MUCH stand up for herself), but because she sees how much I want them to learn to share, and sees her brother how banana he gets about keeping the toy - and she will just let him have it or offer it to him if it was in her hands. She is also very loving and protective towards her brother and ALWAYS thinks of him. He will not start eating if her brother is not there too and will not have any treat if her brother did not receive one too (even though she's a major eater and she loves treats like crazy). But she has the impulse control of a monk and will postpone gratification at three like I am not able to do at 38.

By contrast, he is incredibly selfish and self-driven and will not do anything that does not directly represent his own interest. That drives me insane because this is a trait I abhore in people (those who only act based on self-interest and self-interest alone). He has the empathy of a rock at 6 while she is watching everyone's faces to anticipate how she can please, how she can help, etc.

Yet, she is far from a noodle; she can be extremely assertive (exactly when she should be) and stand up for herself like nothing else. She is intelligent, socially aware, talkative (without rambling), connected, creative, has been feeding herself since the age of 1 (she HAD TO adapt while I was busy spoon-feeding what I thought to be a very lazy boy), has been dressing herself since two, and is now trying to learn to read by herself (not that I ever have time to show her much of anything anyway). She never really had a tantrum - just some "2 yo" moments that were NOTHING compared to what our son had gotten us used to.

She is just sheer joy to have around, with an aura that makes all people who meet her fall in love with her hopelessly.
Not that this even matters to parents, but on top of that she is also extremely beautiful physically (by conventional standards) - as confirmed by poretty much everyone who meets her and becomes instantly smitten.

My son is very handsome too (they both got their very good looks from their dad) - but he instantly manages to kill the beauty on his face with his moodiness, dark attitudes, self-centeredness, and frequent desire to pi** you off and nag.
For a long time I thought he was a warm and responsive little boy because he enjoyed physical contact so much: hugs, kisses, squeezes, tickles - you name it, we have it. I never spared affection on him and he always wanted attention from me so now he is used to having this all the time. But recently I realized he could not care less about pleasing his loved ones or giving just an inch from him to cut us some slack.

One evening I had a bad cold and could hardly speak from so much coughing, yet he kept demanding his nightly bed time reading from me - despite seeing how sick I was and despite explanations. I decided to read a little to them anyway...I was coughing like a nut, he saw how terrible I felt and he kept saying: keep going, keep going.
My 3 yo though asked me to "stop because you feel sick".

That night I literally felt disgusted with my son. It dawned on me that all he cares about is himself. The hugs and kisses he gives me are rather sensory treats for him than love for me. I only recently realized this, after the dx.

All these being (not easily!) said...how can people not want NT-s? Who would be so masochistic to want the other version, at least the kind that I have? I realize my NT daughter is actually atypical even for NT-s and that she really is the kind of gift that many parents dream of. But still.

The poor child is indeed often left to grow like a weed - because her "suckupus" brother tends to take over the air we all breathe; yet somehow she never forgets to "water herself".

Surprise, surprise.
What do you think MY son wants to do when he grows up?

If I knew he could really make a profession of it, I would let him go at it all he wants; but since I've found out about his dx, I just can't stand seeing him obsessing over dinosaurs. He's had the obsession for over a year and now he seems to be slowly changing towards planes. I didn't forbid them but I certainly don't encourage them either. Not anymore.

And thank you for your warm welcome!

Generally speaking, boys require more energy to deal with than girls.



These are not characteristics of AS and are likely just individual characteristics of your son. Like all children, some children with AS were easy babies and some were not. I was very easy. I liked nothing more than to be left alone and I never had attention problems or much in the way of tantrums. My brother, who does not have AS, had far more tantrums than I did.



There are some parents here with multiple children on the spectrum but I think it's far more often the case that only one child is on the spectrum. I'm the only one in my immediate family with AS.



I will address this later.



If he does have AS, he likely does not realize he is acting this way. People with AS are generally naturally altruistic (too much for their own good sometimes to be honest). I think when I was younger I honestly did consider others more than others generally considered others, and I frequently went out of my way to accommodate others, however these efforts went unrecognized. Instead, I was frequently called inconsiderate for not realizing I was acting inappropriately in a situation, or for being "difficult" in a situation where the demands on me exceeded my ability to meet them and my well being was being disregarded by others. I was often called selfish for not sharing something which the other individual didn't understand was private to me...usually something they themselves wouldn't have a problem sharing, when in reality I shared many things that others would have trouble sharing.

I may have unintentionally been inconsiderate or selfish in some situations but more often I found people were being inconsiderate of me, mischaracterizing my intentions and not respecting my boundaries and a human being.

Society harasses those with AS far more than those with AS harass society.

If you sat down and asked your son about his intentions towards people, I'm sure you would find a little boy who is actually very warm hearted and good intentioned, but he can't necessarily detect when to invoke those good intentions, or respect boundaries, just like you can't always detect when to invoke good intentions or respect his boundaries, and that is one reason for his tantrums

You need to respect that he has an innately different culture and be diplomatic and open to alternative perspectives to get to the bottom of things and deal with your son when he's being difficult.



Young children with AS rarely intend to piss people off. Resentment is generally a developed trait.



Let me remind you, he is a child and I doubt your recently formed perception of him is true. He is not expressing something in the manner you expect him to and you have judged him based on that. Why don't you ask him what he thinks the best thing to do is for someone he loves who he wants to make happy?



When I was young my mother used to get a bad cold every year, and she couldn't do what she normally did and this was very difficult for me to deal with. I cared about my mother of course, but I couldn't help but to be stressed not only by the change in schedule, having my father do thinks around the house that he normally didn't do, and the change in my mothers voice. I had a difficult time with changes like this because though they weren't big changes, they seemed to be and made me feel disoriented and like life had lost it's predictability, which is actually frightening to anyone. Your son had an issue with the loss of normalcy.

I'd like to add that this type of thing isn't limited to children with AS, though children with AS have more of an issue with it. My grandmother had 5 children, none of whom are on the spectrum, and she once recounted to me that when they were little, she cut her finger making breakfast and had to go next door to get a ride to the hospital, "and all those kids cared about were their damn pancakes!"

Never the less, you can help your son recognize situations in which his empathy and consideration is warranted by asking him how he would feel in x situation, or when he's in that situation, reminding him that other people feel that way too in that situation, and pointing out that that's why it's important to treat them how he would want them to treat him.




I wouldn't mind if my child had AS...but then again I have AS and I know how to raise a child with AS, as much as I know how to raise a child anyway. I know how they think, and what their needs are and I know we are actually very sensitive and altruistic to begin with.

It's very possible you son has things going on other than AS though. Perhaps he has ADHD. I don't know.

I do know, however, that a good number of the parents hear found their lives got a heck of a lot easier when they took a bit of a time out themselves to stop and learn from their children with AS. You can get very straight answers out of a child with AS if you ask the right questions, and then suddenly everything starts to make sense and you see what to do about it.

Supporting the growth of his 'obssession' can be a healthy thing. Unless he has been dx'd with OCD, an Aspie's special interest is just that - a subject they are enthralled by. It can be used to encourage better study habits... palentologists are scientists and all scientists need to learn math. Palentologists needs to; learn to read maps, and write big fancy papers, and how to dig dinosaurs the proper way... his interest can be used to guide him into a whole world of other activities. Letting him line up dinosaurs in rows for the entire day isn't a good thing but guiding his interests can be one of your stronger tools. Don't discount it just because of his dx!

If he wants to be a palentologist, why can't he be? Asperger's doesn't limit him in a profession. The only thing that will limit him is people telling him he can't do it because he has Asperger's. He will believe what you tell him - make sure you are sending him the message you want him to hear.

I won't pretend to take the high moral ground as I realise you are coming to terms with the stress in your life. However, you need serious help if this is your attitude. You also need to understand a little bit more about autism before making horrible statements like this one.

Please understand that autistic children are just as sensitive and just as loving as any other child, I am actually quite disgusted that you would insinuate your son is some type of parasite! honestly how dare you say that.

Please seek professional help for yourself as well as your son. He needs you to be supportive.

I think that we need to be careful when judging someone's statements. People have emotions, and sometimes they are strong and very raw. Maybe what she said is offensive, but it is how she has felt. I don't think anyone can say that there has never been a time that some "horrible" thought has crossed their minds. I know they have with me. It doesn't ever mean I really believe it, but at the time it sure felt that way.

I have mentioned one of my daughters has anger issues. The most important (and one of the first when I started helping her with this) is that it is okay to be angry. Anger is a perfectly normal emotion. It isn't the emotion that is wrong, it is how you deal with it. Resentment is the same. It IS an emotion. You cannot tell someone that they are wrong to feel it. It doesn't matter who the feeling is about. It is an emotion, and it is very real. I did not hear her say that she acted on anything, only that she felt this way. I believe that we should be careful before we tell someone that their thoughts are bad. Thoughts are not bad, but actions can be.

I'm not a practicing psychologist but goodolddays is clearly not coping with her son's autism and her "raw emotions" surfacing here on this forum are a sign she needs to put things in order. How this is achieved and what strategies she chooses are up to her, but she needs to recognize that she is walking a tightrope and that her children's state of mind are at stake (not just hers).

I'm gonna have to say I agree with this. I've been having similar thoughts reading these threads but managed to hold myself back.

That being said she may just be at the stage where she's still processing all the info she's getting on ASD's and making the mistake of pathologizing every single thing her son does.

That's why I said what I said. I have had a few knee jerk reactions that I have held back as well, but sometimes these thoughts happen. If they continue, or become worse, then yeah, it should be addressed, but we don't know if this was an isolated feeling, if today/yesterday was a breaking point, or what. I think that even though she has said some very strong and even negative things, it is brave of her to say. How do you think she would feel if she had let these thoughts fester inside of her? They do need to come out. Maybe they need to come out to someone who can offer better advice than we (such as a professional), but she did say it here. The question now is "Does she feel better having said this, or does she feel the same resentment or worse?" If it is the latter, then I can agree that maybe counseling may be needed, but even though it has been a pretty 'intense' thread, she has been letting this out. I think we should allow her to explore these thoughts and see if they are just temporary, or if she does need to see someone.

Also, I know that the place that diagnosed my daughter also offers support for parents. This support is not there for no reason. I am sure that she is not the only mom who has felt this way. If her son is reevaluated by this specialist, perhaps she will be able to see someone if she needs to at that time. If she did not care about her son or his life, then I seriously doubt that she would be here trying to learn.

I understand perfectly the reactions to my confessionals above. I breached orthodoxy by expressing what I feel.
But people do get compassion fatigue; and take my word for it - I am VERY fatigued.
Those feelings DO show up, no matter how much of a saint you are and no matter how much reason you possess.

Do I ACT wrong towards him? NEVER.
DO I LOVE HIM LIKE CRAZY? Yes.
Do I think that love is acceptance and accommodation of every junk trait in a loved one's personality? No. I am desperate to help him overcome his difficulties that seem to torture him - and I feel this way exactly because I CARE a lot.
Of course, I set boundaries and limits and unfortunately, those can act as terrible punishments for him in and of themselves. He generally wants things to go his way. Limits can trigger a tornado (that comes in the form of intense, endless whining, tragic crying, and even trembling at times - the classic meltdown, I guess).
He basically will not accept any situation that does not go his way - unless it is something he didn't care all that much about in the first place; but he is simply incapable of giving an inch for the sake of "listening to mom/dad", pleasing, caring or paying attention to what is required of him.

One thing I know for sure is that I will not become the kind of parent that gives in to every whim he has just so that his condition can be "coddled" and "accommodated". He copes with those boundaries by going bananas and I pay for them with stress, and most likely, with lowered life expectancy. However, becoming the parents that always give in to what he wants would be the ULTIMATE HELL for me.

I HAVE been a saint, let me make this clear. We've always handled him with a tremendous amount of patience and love until he forces that patience to expire because he seems to get kicks out of seeing that patience expire.
This child has also been very well raised: with firm but loving boundaries, with lots of attention, lots of reading and interaction, with patient and methodical instructions for manners and "how to-s", with everything a child would ever need; and then some.

If my daughter had received this kind of care, attention and input as he has - she would be the president of the US by now. Or you get the message.

My own parents, who live in Europe, saw for themselves how difficult he gets. I had told them about it and they, of course, were not taking me all that seriously casually telling me to cut him some slack. Until they saw - and they shuddered.
As much as they adore him and love him, I can see how they want to literally strangle him when he gets completely irrational at the age of 6 - and goes on and on with his tantrums, whining and insistence that he get what HE wants, regardless of how badly he affects those around him or how badly he embarrasses himself; regardless of how sweet, and rational, and protective and rewarding the others get with him, to guide him out of his tantrum or whatever his self-drive pushes him towards.

We also found that the idea that "tantrums should always be PREVENTED" and that "the child should immediately be removed from the situation when a tantrum seems to be approaching" - is simply not compatible with REAL LIFE. Not realistic. Period.
Life one this Planet doesn't work this way and while he may be on the Wrong Planet, this is the only Planet there is. Bummer.
So he goes through the meltdowns every time until they deflate - without learning ione single bit from his experience (I know, it's something AS kids do. Oh, well).

Other than these behavioral issues (meltdowns, intense self-drive manifested as sheer-selfishness, social ineptness and intense absent-mindedness) he is the poster child of normality - whatever is left of it after you have all those issues.
We continue to do right by him, but he is slowly sucking us dry while his little sister is almost raising herself at the age of three - and with quite a bit of success on top of that. I am starting to feel very guilty that I may be doing wrong BY HER in the process, while working on her HUGE-maintenance brother.
Not clear why she should deserve so much less attention and energy from us just because he has AS.

Do you really think that any normal human being's soul will not be tried by these all too evident differences?

I do expect to be judged here because I know that, on paper, what I say is socially unacceptable. But the reality is there's an elephant in the room and we can scream all we want about how unfair, incorrect and in "need of help" those feelings are: the "elephant" is still there. The only one who needs "help" is my son - the kind of help that will allow him to overcome such behavior, not the kind that would tolerate it or accommodate it.

We are doing our best to provide that kind of help. Whether he will take it or not - this is the question.