Devastated - please help!

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I was thinking exactly the same this morning. I was thinking how that poor guy would feel if some day, for some reason, he finds this info online. I think people take "sharing their thoughts" online too lightly. I've read of people being fired for "sharing their thoughts or feelings" on Facebook or Twitter. People seem to think that as they use an alias nobody knows who they are. In Internet is very easy to find out who you really are, because people is not used to be cautious and usually give up too much info about themselves anyway (I am included - my husband is always angry at me because of that - he is a programmer, so he is security freak). I only hope that kid never finds out what mommy really thinks/feels about him, because that would be devastating for him. My mother never loved me (she only expected things from me and retrieved her love if I did not fulfill her requirements). I know how it feels. I am almost 40, and it still hurts. You never get over it.

Your posts, goodolddays, are disturbing to me as well. I understand that you are hurt and confused and obviously in denial.

My brother has AS and growing up my mother tried so hard to "condition"/"discipline"/"shame" it out of him. Back, then no one understood what it was but the treatment was much like you describe-trying to get him to function on a level that our society accepts. The problem with this is that my mother never understood that my brother was so different-that his brain worked totally different-that his experiences were so different. It was unfair and ridiculous of my mother to try to make him into someone he wasn't-and every moment of this torture of him created anger, resentment, and a feeling within my brother that he was broken-and that he didn't fit in to this world. It was catastrophic.

It is very hard as parents to wrap our brains around the concept that our children with AS are so completely different-as a very base level-and that in some ways it is abusive to put all your effort into trying to make them what they aren't. I am not expressing this as tactfully and eloquently as some could but what I am trying to get across is that your son, if he has AS, is DIFFERENT. The reason so many parents on these boards go about parenting them differently-and try to be so understanding-is that we understand that their mere functioning in a world that seems so harsh and inhospitable is so much harder than a NT child and therefore, they should be given some understanding, support, and room for their reactions and meltdowns. You cannot eliminate the meltdowns-yes you can lessen them but they are merely responding with their different brains-brains that have so much difficulty in a world that we find easy to navigate.

You will find with their different brains that there are extreme and profound gifts as well. With the difficulty also comes ways to view the world that are amazingly analytical and clear. In my brother's case he can see the way things work and I have conversations with him that make me feel so inadequate-because he sees so much more than I do. With my daughter it is the same but a little different-her gifts are developing but I have moments where I am confounded by her take on something-as if her viewpoint and take comes from a place my brain can never function on.

Yes, there are moments where my daughter's meltdowns or reactions cause me extreme anger, embarassment or confusion. I try to remember she is reacting to the experience which is changed by the way her brain works. I try to be understanding. A parent should be a safe, understanding person who makes their child feel as if they can conquer the world, that all possibilities are open, and that the child is NOT "broken".

This....

It sounds like AS from your writing, but whether he has it or not is not something I can't determine. However, I agree with most people here, that your reaction is more important at this time than the accuracy. Dx will change over time, as he grows and learns coping skills. To look at the bright side, you are going through this now at age six. He will create a great foundation for coping and it will allow him to shine in the ways you outline even more. I was not diagnosis till the age of 29 and I will always wonder how early intervention would have changed my life.

Last edited by obichris on 06 Jul 2011, 3:50 pm, edited 1 time in total.

Good old days....

Odd name, BTW....

Reached all milestones early
talking
perfectly verbal(MY vocabulary was large, but mostly english. I did have a LITTLE french, spanish, German, Italian, Japanese thrown in though)
warm and responsive...Yeah, I often SEEMED that way.
Highly interactive with adults. MAN, whenever a worker came by, I shadowed them, spoke, asked questions, LEARNED. I went for an operation when I was about 14 months old, and spoke up a storm with the nurses!
seemed fine at bday parties and occasional playdates

Yep, sounds kind of like me! OK, WHY are you devastated? SO, how bad will it get? Well, many social problems apparently PEAK around 6 or so. There is a pruning that happens around 8 or so. Although *I* noticed mine, I doubt most do, and it affects EVERYONE, even YOU. I mention it only because there is one that happens at 2 that people often refer to in a round about way, like in taylor morrises video where she lost her ability to speak when she was like 2. The one at 8 isn't THAT bad though. And your son MIGHT be very intelligent. Think of a persons mind like a multiprocessing computer. HECK, the OLD atari had a processor to run the screen, another to run sound, and another for general processing. With AS, it is like the ability in the screen and sound processors is sacrificed for the general processor. So he might even seem STUPID, but be quite smart. Th psychiatrist may have given him an IQ test. Such tests don't generally test his speech, social ability, or ability to do sports, but test most other things.

Everybody has offered such good advice and hopefully put things in perspective. It's not the end of the world and he really does have many factors going for him.

I just want to throw in a little something about the NT daughter. She deems to be "raising herself" since she is very low maintenance in comparison. This probably seems like a very good thing right now. But it can have negative fall-out in the teen and young adult years. It is a sadly common phenomenon in families with one high maintenance child and one low maintenance child that the low maintenance child snaps somewhere in the late teens and starts wildly acting out in order to get some of the attention denied for so long.

Other posters have written at length to talk you down from that ledge. Your despair is unhealthy for yourself and your family. Despair is a toxic emotion. The sooner you can let it go and find peace through acceptance and forward motion through taking positive steps (like talking to the school about an IEP) the better. If you can find places where you can cut your son some slack, the whole family will benefit. If possible, try to set aside some special time for your daughter and don't give in to the temptation to let her raise herself. She will be resentful indeed when she turns 15 and things get ugly then when a kid decides they are sick of being the "good" kid. Try to head off that potential situation by paying her some more attention. Can your son go with his dad while you do something with her? And vice versa- can she go with dad while you do something with your son? That label of "the good one who doesn't need so much work" may suddenly become something she decides to rebel against when she's a teen. Meanwhile, the "good one" label will make your son very jealous of her (even if you never say it out loud) and the two of them need to be allies not enemies.

Janissy, that is very good input, and very well expressed. I think you are dead on. I hope the original poster comes back. There has been some really good advice for her.

I just wanted to thank everyone for your input and opinions (I have been away for a few days).
I really appreciate them - including the less-than-positive ones as far as I am concerned.
I certainly have a few things to clarify and will return tomorrow to do so. Thanks again!

Goodolddays desires son to get with real life. Questions: how, and at what price?
Method 1: Expect son to "get with it." Price: long term horrible self esteme, depression, years of therapy as an adult, possible suicide.
Method 2: First do no harm. I know it will appear like you are catering to his every whim but understanding and alleviating his sensitivities, stressors and triggers is the all-important first step. You cannot skip this step toward your ultimate goal, but obviously you want to train him out of it. Gradually apply therapy options or train him yourself for social understanding etc. Price: time and attention in the short term, but you gain greater love and connection between you and your son.

For me, a gluten free and casein free diet helped my son's sensitivities and therefore his meltdowns greatly. Now I am in a position to move him toward understanding social issues, doing his math and chores, character training, spiritual training, etc. A gluten free, casein free diet only helps 33% of cases, according to someone here on WrongPlanet but it does work for us.

This describes my son, almost exactly. He also met all developmental milestones as an infant, but at the prompting of a pre-school teacher, we had him tested and he was diagnosed with "mild autism" at the age of 3 1/2. They weren't giving Asperger's diagnosis much back then. He's 18 now. Graduated from HS this year as Valedictorian. Going to college on full scholarship this fall. He has always participated in social events at school but does not have close friends.

I understand your feelings about the dx. It's just hard to accept that your child's life isn't going to be everything you have always dreamed it would be. I don't know if my child will have "normal" adult life. I'm sure he can get through college, but I'm not certain he can get through an interview. Will he have a job? A wife? Only time will tell. But this is true of an NT child, as well. I can tell you he's had a pretty good life so far and I plan to go on doing everything I can to ensure he continues to have a good life. That's all any of us can do.

Yet, no parent of an NT child loses sleep over such questions. Sure, some NT-s end up without jobs and without spouses. But most don't. Why wouldn't your son be able to get through an interview? Someone who did so well in school...why not?
And if early diagnosis is so wonderful, how come that all those programs, interventions, therapy and the like still cannot make an AS child do what needs done in adulthood? Then is it even worth the label? Is it even worth disclosing this dx to the school - where the label will only attract pity and disdain from classmates and very likely, from parents too? Or first from parents and then from classmates, as they are too young to understand much right now.

We are currently TORN TO PIECES about the decision to disclose or NOT TO disclose the dx to the school. I have been advised both to do it (for services and intervention) and to NOT do it (the services are not much help, the label will forever stigmatize him in the eyes of classmates, it will always be on his record, everything wrong he does will be attributed to his AS, and volunteer parents pretty much ensure everyone will know about it).

What would people here advise us to do? Yay or nay for disclosing this to the school?
We will enroll our son in K in 3 weeks, so the time is getting close and we are still torn to pieces and LITERALLY losing sleep over it.

I don't know how to put this...to read dozens of messages implying I am making "too big of a deal" out of this, that I am imagining too many bad things about Aspergers, that I am misinformed (I am not), that kids with AS can conquer the world and then some; yet at the same time, to hear so may parents doubt that their child will ever be able to make a close friend, go through an interview, have a partner, hold down a job?...

I don't want to sound too dramatic (though I am quite sure I will end up sounding exactly like this to this audience) - but really, if this is the case, how is this NOT a devastating condition? If you get to the point where you can't go through an interview, can't hold down a job or have a significant other of any sort - that really sounds DEVASTATING to me.

If a "good fairy" told me that the child I am about to conceive will surely have this kind of life (no job, no partner, etc) I would most definitely say "no, thank you" and just abstain from conceiving. Not because I am not able to give "unconditional love" (I am not a big fan of cliches and platitudes without much meat to them) but because I would know that this is not going to be a terribly pleasant life to live - for the child, not for me!! !.

Of course, such fairies do not hang around when we are about to conceive children and we get what we get - and then we try to prepare them to face the world that IS, not the world that SHOULD be according to their neurological make-up.

Either way, I continue to hope not only that my son WILL be able to have all of the above - but also that I will not ever get close to having serious doubts about that. He is too young for me to have such doubts (about interview, job and spouse) but I know for sure that if he doesn't figure out this "give a sh*t about what the other person wants too" business in the next 5-10 years max, he will be at major risk of ending up alone. Hopefully not without a job, who knows...
But to even have such worries at such an early age for the child, is terrible for the parent - in and of itself.

I have quite a bit more to add in reply to what other posters said but will have to comeback with addressing a few themes that seem to emerge from the replies I received - and for which I remain grateful.

I would wait to see how he does in Kindergarten before disclosing to the school. Disclosure is to get the child on an IEP (Individual Education Plan) and to get services, if either of those is needed. You won't know what is needed (if anything) until he's already spent some time in school.

As to the worries about his future as an adult with a job and relationship- yes, those things are harder for people on the spectrum. But "harder" doesn't mean "impossible". It just means more effort. The third thread down from the top of this forum is a thread intended entirely for parents who are themselves on the autism spectrum. They discuss the unique challenges of being an autistic parent (and spouse, and employee) to find solutions. I point out that thread merely to show that right here on Wrongplanet are people living the life you worry is out of reach for your son. They reached it. But it takes work and that work starts with you figuring out what things really are hard for your son and helping him learn how to do them. You may need the school to help also but leave that for a later point.

Let me put it to you this way - one of the current members of the National Council on Disability, Ari Ne'eman, formerly of the Autistic Self Advocacy Network, has a diagnosis of Asperger's Syndrome. He was the first autistic to be appointed to the council. http://en.wikipedia.org/wiki/Ari_Ne'eman

I understand this is confusing for you: it was for all of us. I think the concerns you hear in this thread are because you seem to be assuming the worst is true, rather than looking to your child for clues to who he is, what he needs, and what he's capable of. Nobody here is saying it's not a big deal; everyone here knows that it's a challenge to meet the needs of someone on the spectrum - but what I think everyone means is that the challenge is not insurmountable, and that while the negatives can be overcome, you don't want to dismiss or forget the positives.

As for disclosure, you need to weigh the positives and negatives - I think if you search "Parents' Discussion" disclosure there are some threads here on the forum and you can read about people's different experiences. It's particularly difficult going into kindergarten, as you have no idea of how your son will react to school. Many kids on the spectrum are unable to hide it, and some of their parents have found that it is easier to disclose and get services than to be labeled something worse than autistic by their peers. However, some do keep it together at school (which unfortunately usually means things are worse at home) and can coast without services, and their parents have decided not to disclose the diagnosis for the reasons you mentioned.

I appreciate the exchange about my own "mental health" here.
What I can say is this: I don't much believe in "counseling" - specialists to confess to who will magically make you see "the light", show you "the way", teach you to cope, make you feel better, etc. I have visited one in the past when I was in grad school and the whole thing was just laughable to me. I eventually got over those problems I had at the time just fine and the helper's name was not "counselor". It was "life experience".
Life has a certain way of taking you by the hand and showing you the way.

I am perfectly aware of what I feel and I am honest when I say I did not say those things just to "take it out in frustration" and make myself "feel better".
My son IS a difficult child, he has his VERY difficult moments (not all the time) and he is nowhere close to LOVABLE in those moments. I said it once and I will say it again; and despite him not being lovable in those moments, I still love him and do right by him and try to help him to learn how to NOT be like that anymore. I make him aware of his feelings, I give him alternative modes of expressing himself...it's not working yet, but what else does? Nothing.
A mother who LOVES you but doesn't LIKE you in those moments - YOU CAN HAVE.
But a world that will find "lovability" and "special-ness" in your downright socially unacceptable and unlikeable behavior - YOU CANNOT HAVE. They will neither love you nor like you - unless you adapt and learn to change your behavior to give the world what it expects.

If I did not have rock solid faith in the amazing power of the brain to adapt to its environment and basically change its wires to make do in that environment, I would probably be in excruciating pain right now, knowing what life reserves for him.
But I do believe that even AS people are capable of change and that while they may not learn from 20 lessons, they will eventually be able to learn from 200 lessons. Or maybe 2000. But they will.

Two years ago I was diagnosed with Parosmia - an almost complete loss of smell; the little that was left was completely distorted. Taste was severely affected too, to the point that most foods tasted like burned soy sauce. A complete nightmare. Google and you will find - in case you don't know. I got this as a result of a very strong viral infection that attacked my cranial nerve. I was told this is for life. I saw the best specialists in the world (in Boston) and they just said "get used to it". The only hope they gave me was that often times, the brain fixes itself via adaptation to the environment. The dr. told me that just like a person with a whistling in his ear eventually stops hearing the noise, this is how my brain will learn to ignore the burnt soy sauce taste and smell.
Two years into this I continue to have poor sense of smell but the taste of most foods are almost back to normal and I can enjoy normal eating again. I don't even think about it anymore - I feel perfectly fine. And I never thought I could because drs. said "it's for life" and "there is no cure for this".
Yet my darn brain learned to adapt. And now the strawberry tastes like strawberry again, the chocolate tastes like chocolate, the pepper like pepper. Etc, etc, etc. I certainly don't have the torturous dysfunctionality I had for months, when every food was making me vomit because of the nasty burnt soy sauce smell and taste that was following me everywhere.

Now...based on everything I read about ASD-s and put together, I really do believe the brain is an incredibly adaptable organ even for AS individuals - and that those who are guided towards the right way of doing things (as opposed to enabled to accept learned helplessness, taught to define themselves via their "disability"/label or encouraged to see themselves as "different") can break out of their pattern...because really, there is no other way.
The brain eventually catches on...and catches up.

Listen, sounds like before your kid was born you already had very high expectations of him (expectation that IMHO may have been high even for an NT kid.) Even if your kid were NT he might not be someone who gets all A's, that's just how it is.

Regardless of NT/ASD we are all individuals and as a parent we have to accept this. Our kids are not necessarily going to follow in our footsteps!

For your worries about interviews, etc, well I can relate my experience a bit. I think for anyone, ASD or no, performing well at job interviews is a learned skill. I know in the past I failed interviews for jobs I was qualified for because I answered a lot of the questions inappropriately and tried to be a smart@$$. I ended up just buying one of those "how to do job interview" books and that's how I landed my current job. I work for one of the big US financial companies' Tokyo office now. Coaching can also help with interviews.

As for partners and friends again it's more of a personality thing. When I was younger I used to get bored with a lot of people. I felt we had nothing in common and nothing to talk about. I didn't really have any close friends till high school where I met some people with common interests. Same goes for a life partner - when I was young I was terrified to even approach girls. When I finally learned to do that I found I was bored with a lot of them...I had to meet someone with similar interests.

Do you still think he's hugging you just to get sensory input?