It's been such a hard day for us. New to boards. Need help

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This will be my first post on WrongPlanet. I've looked for web sites for parents like me before, but never had any luck. I'm so happy to find you guys tonight. I need to talk.

My son is 11 and was diagnosed with Asperger's about a year ago. I always thought he was just hyperactive until he was in 3rd grade or so. Someone suggested AS to me and the rest, as they say, is history.

I could go on and on, but right now this is my problem. He has meltdowns. BAD ones. Today he slid down the stairway in a box, accidentally kicking a hole in the wall at the bottom of the stairs. Of course I wasn't happy about this, but he freaked out. He screamed and said he wanted to die. He threatened to get a knife. He ended up running down the driveway until I could no longer see him, saying he was going to run away and never come home because his dad would "kill him." I don't know why he decided to be hyperfocused on his dad, but he was.

I didn't run after him at first, but when he didn't return in the pouring rain for about a half hour, I went out looking for him. I called and called. Then I panicked even more and called my mother to help me search. We live in a woodsy area. I finally drove down a back road and coaxed him into the car.

This "meltdown" lasted for about 3 hours today. I ended up a pile of tears and anxiety. He seemed hysterical at times and finally fell asleep for awhile.

Sometimes I just don't know what to do.

We recently upped his dosage of guaifenicine for his impulsiveness. We've tried so many meds, nothing seems to help. He has an IEP at school, which I worry is doing nothing.

I don't suppose I'm the only parent on here feeling hopeless? I worry so much about him . If he's this way at 11, what's going to happen when he's 18 and I can't control him anymore? My heart just aches worrying about him. I love him so much, but I don't know what to do.

Thank you for reading my post.

Hi ChristineL290. I'm not a parent, but welcome to WP and I'm glad you found this forum.

I've read stories similar to yours from other parents. Believe me, you are not alone.

Has his father scolded him for stuff like this before? Granted, hyperfocusing on his dad could be for other reasons, too. I'm glad you found him and he was okay.

You said he's been on several meds and is on one right now. Does he have a therapist he sees regularly? Does this therapist have expertise with kids with AS? IMO, that's what is needed. I'm 31 and grew up in the 1980's when the term was unknown. I went to several "general" therapists who didn't know anything at all about where my "issues" really came from. I received the most love and support from my mom, who had to deal with things by herself.

Does his dad understand about AS? Is he involved with your son in a positive way? I ask because my father was not and, sadly, that's still sometimes the case now.

Again, welcome to WP and I hope that this forum can be a source of support, caring and advice.

First I'd like to say that impulsiveness in itself is not a symptom of AS, nor is hyperactivity. Many children with AS are actually very reserved. Impulsiveness with hyperactivity is more typical of ADHD. However I am not claiming your son does not have AS, I just wanted to make you aware of that.

As to why he reacted in the way he did, and was so concerned about his father, why don't you sit down with him and ask him about it. It could be that his father has been tempermental with him in the past and you don't know about this, or he has been scolded in the past for accidents when he didn't have bad intentions, so when he messes up, he can't forgive himself because others have never bothered to forgive him, or have even realized it was an accident.

Talk to him about this and let us know what he says.

I do believe my son has ADHD tendencies, along with Aspergers. I used to think he was just a hyperactive kid until he started getting older and his social skills were so far behind the other children. Then he began to become hyperfocused on things and the pieces started to fit into place when we saw a child neurologist (and a psychologist who specializes in AS), and realized that was what we were dealing with. He's been on Ritalin and other stimulent drugs with good results UNTIL he starts getting tics (arm flapping, excessive blinking, etc). Sometimes I resort to a Coke or a few gulps of coffee to help him focus now.

Aspergers seems to have taken a front seat with his problems however (lack of friends, bullied at school, lack of organization and so on), so the hyperactivity has been lingering in the back. Sometimes I also wonder if he has an element of depression in there as well.

We do have a psychologist that I see, but unfortunately my son really won't cooperate with the therapist (going in...we have to practically block the door closed or he'll escape). So the one I've spoken with has given me resources of ideas and lets me bounce ideas off of him. I realize this isn't ideal, but it's what our insurance has offered to us.

The child neurologist also has verified the Aspergers diagnosis and has started him on this current medication for the impulsiveness, but now I'm wondering if it's such a great med since upping it has seemed to cause a problem.

As for his father (my husband and I live in the same house, both bio parents of my son), yes he's a strict dad, but he loves his son. I don't believe my son is truly scared of his father, I think he just hyperfocused on that situation during his meltdown. He's calmed down now and has been discussing computers with his dad this evening, so all is well (for now). I truly believe he was so frustrated with the situation (likely angry at himself for doing what he was told not to do in the first place--sliding down the stairway), he didn't know how to react and thus, Meltdown Central. This meltdowns are scary and overwhelming to me, and that's where I'm lost. I worry about him. What if he does something stupid and impulsive, like runs into traffic?

I wish my area had more resources. The groups I've contacted have been centered more around younger kids (preschool age, younger grade school). Their discussions aren't age appropriate to what I'm going through with my 11 year old. The school district has an IEP, but I still don't think they know what to do with it. He's learning how to read body language, but that's about it. He has no friends and believes everybody hates him.

Thanks for your ideas, advice, etc. I have a lot of books on the subject, but it's nice to talk to others who know what it's like. It's a lonely road for both of us.

There is a forum here called "Kids' Crater"--if he wants to talk with children his own age who have AS, that might be a good place to start. Take a look--I've never been there myself.

You're probably right that he got mad/frustrated at himself for disobeying. Maybe, at a time when he's calm, both you and his dad could talk to him about how to handle it better: say "I did________and I know I shouldn't have. I'm sorry" or something like that.

Take care, all of you.

He should be seen by a child psychologist who specializes in children with AS. Most child psychologists only know techniques applicable to children not on the spectrum, and most of these techniques don't work with children with AS.



He might not be, but there's no reason to speculate when you can ask him. In my experience, parents speculate and speculate and speculate, when there isn't much of a need to, because when asked, most children with AS will give an honest, straight forward answer. The parents think it must be more complex than that, and usually, it isn't.

I'm also not a big fan of the depression theory. While it's not beyond a child to be depressed, I think many children with AS get pegged with being depressed when they are not, because of the melt downs and spectrum behavior. He may get momentarily upset but I don't think most children dwell on things like adults. Their mind is much more dynamic and they tend to fixate on things they like to do, or would like to do, rather than problems in life. If he experiences any actual depression, it's probably only contained within the immediate situation.

There is one thing I think most children with AS do have trouble articulating though, and this is partially because they don't know how to articulate it, and partially because NT's...and adult NT's in particular, don't understand what they are saying. I'll pose the situation as a question first...

What is the difference between cats and dogs in terms of how they act? I'm sure you know there are differences even if you can't articulate them.

Now suppose there was a cat which looked like a dog, and was raised by a family of dogs (I'm not using dogs in any derogatory sense). Suppose those dogs noticed this one "dog" was different, and perceived it as abnormal that the "dog" did not do dog things, but "strange" (cat) things. Now suppose the dogs take this "dog" to the puppy psychologist and the puppy psychologist is trying to figure out why this "dog" acts so strangely.

Consider now the perspective of the "dog" which we will now call by it's true identity, the cat. Is it reasonable we demand that a cat act like a dog? When the cat is faced with this, as you can imagine, the cat would be confused. The cat acts the only way it can act as a cat. In the face of the demands of the dogs, the cat does not know what to do with itself because not only is the cat only acting in a manner innate to it, but the cat has no idea how the dogs expect it to act.

Imagine if everything you did was scrutinized, from the inflection in your voice to your minute mannerism as you go about your day. And imagine this was a problem to some people and they were constantly trying to figure out why you had that inflection or made certain minute movements.

This is the world to a child, and sometimes even an adult with AS.

I spent the better part of my child hood in psychologists offices as they pondered over what was wrong with me and speculated that I suffered from some severe form of depression despite the fact that I flat out told them I wasn't depressed. To be honest, I knew I was there because I was "difficult" but I didn't know what type of epiphany they were expecting to get out of me. I had no ground breaking revelation as to why I acted the way I did for them....whichever way that was that people with AS tend to act, and people without it don't.

That's a bad sign. That therapist may be doing more harm than good. My parents started me in therapy when I was age 5 (no one knew about Asperger's back then so I was just a huge puzzle to be solved.) I continued in therapy, with a few different therapists, until age 15. Some of those therapists did a DEEP amount of damage that I am still undoing. It is not that they were bad therapists, they just didn't understand the Asperger's mind and some of the therapies that work very well for "regular" kids can really hurt Asperger's kids.

The fact that your kid is SO noncompliant suggests to me that he's currently seeing a very ill-fitting therapist. Does his therapist specialize in and have lots of expeience with AS kids? If not, you may want to find another therapist. If insurance won't permit another therapist, you may find that no therapy at all is less damaging than improper therapy.

I had a very bad experience with a psychologist once, but my parents promptly fired him.

You were very fortunate. My parents blamed me for everything the Asperger's caused so when I didn't like a psychologist I was forced to keep seeing them anyway because my parents thought I was just resisting looking at my problems and changing.

I mean, it was bad. I got blamed for being bullied, I got blamed for my dysgraphia, I got blamed for my poor time-management skills and executive dysfunction. I got yelled at for walking on my toes, I got yelled at for speaking too loudly, I got yelled at for asking people to repeat what they'd said (I should have been listening the first time. "Get the wax outta your ears!"), I got yelled at for stims and tics.

So not liking my therapist? Obviously just me being oppositional again.

I believe my official diagnosis as a kid was "emotionally disturbed."

While impulsiveness may not be in the DSM-IV criterion, it is not excluded - there are many AS kids who have impulse control problems, without having hyperactivity. That being said, ADHD is a common co-morbidity, so it's also possible to be both.

At any rate, my son is very like your son; he makes the same sorts of statements whenever he makes a bad decision - we just got him assessed by a program headed by a pediatric neurologist. I wish we had started there, because we wasted a year and a half with a social worker (who, at the very least, did help DH and I learn to manage DS better; if you aren't getting that, find someone else.) The problem is that AS is, at it's core, a communication disorder - expecting an AS child to talk about anything - much less upsetting things- is usually setting too high an expectation of them. I believe DS could be helped by cognitive behavioral therapy, but it's going to take a lot of work on his communication skills first.

We are finally getting help that's making a difference at a medical facility specializing in pediatric developmental disorders. While that sounds scary to parents of smart children, it really was the right place for us: they understood what we were dealing with immediately. They offered the following resources I think (mind you, limited experience here) were useful: clinical assessment, psychiatrist, psycologists, social workers, organized social skills groups, organized parent training sessions, speech assessment and therapy (this is vitally important to look at even if your child has the vocabulary of a college student,) occupational therapy and school advocacy.

For the meltdowns, I've been helped by some posters on this forum. Tracker's free e-book, found here, is extremely useful. http://www.asdstuff.com/grats.html Also, another poster wrote this ten-point scale in her blog that I found helpful: http://chaoticidealism.livejournal.com/84655.html This thread was helpful: http://www.wrongplanet.net/postt136909.html

There's a lot to wade through on this page: http://www.autism-pdd.net/testdump/test17134.htm but if you scroll down, there's an article on handling "explosive children" entitled THOUGHTFUL RESPONSE TO AGITATION, ESCALATION AND MELTDOWNS
IN CHILDREN WITH AUTISM SPECTRUM DISORDERS (sorry, I cut and pasted - the caps are theirs) which helped me a lot.

In particular, thinking of this scale before you ask your child to do anything:
A level demands = Non-negotiable
B level demands = Important, but not totally essential, can be put on hold if the child is stressed about other things
C level demands= Non-essential, eliminate

This won't help when your child is putting A-level demands on himself, but the overall strategies have worked pretty well for us, and learning to watch out for stressors and reduce them as much as possible has helped as well (the more stressed DS is, the harder he will be on himself.)

It makes sense to me for many AS kids to have problems with impulsivity because executive dysfunction is such a common co-morbid and low impulse control is one of the symptoms of executive dysfunction.

I stated it was not part of the criteria. However I never claimed there are not impulsive children with AS. I simply do not feel it should be seen as a symptom of AS. That is not to say the child does not have a co-morbid condition. I felt I articulated that clearly in my original post but perhaps I fell short.



The communication issue exists because people with AS processing things differently than others, and generally have a different set of innate instructions. But communication is a two way street. Many times, I find parents are content with assuming things and speculating things about their children, rather than actually ask. There are many instances when I, and others with AS have been very clear in our communications, only to have our words be discounted or ignored. For example, I had to continually insist to child psychologists/psychiatrists that I was NOT depressed, and this would always be countered with "sometimes children are depressed and don't know it," at which point I would generally decide I had nothing to say to them because they were obviously stupid assuming that I wouldn't know whether or not I was depressed, and I'd inevitably have some anti-depressant forced on me which only made my behavior worse.

And here, I find much of the same thing repeating, in that the men in the dating forum have women trouble but generally don't want to take advice from women on how to deal with this, and parents in this forum have trouble with their children with AS, and generally don't want to take advice from adults with AS, who were once children with AS....with the exception of some parents of course, perhaps yourself included in that exception.

I'm perplexed. Perhaps Agent Smith was correct we he told Morpheus...

Insert "adult" for "child" and it's also true. I got tired of trying to get help only to have therapists ignore my genuine issues (despite my putting voice to them) and trying to thrust anti-depressants on me. *sigh*

It's been really hard for me to get medical doctors to listen to me, too. I really do think I must be speaking some other language and only *believing* it's English I'm speaking in.

Perhaps it is time for a med vacation. It is possible that what seem like inherent problems are actually medication side effects. This needs to be done slowly and under the watch of a physician.

He also needs a new therapist. He can't benefit from therapy unless he can relax and be comfortable with the therapist. This one is clearly a bad fit and he is not benefitting.

Chronos wrote:
'Parents speculate and speculate and speculate, when there isn't much of a need to, because when asked, most children with AS will give an honest, straight forward answer"

(I hope this doesn't hijack this thread; it doesn't seem worth it's own.) I have seen this - I speculate and speculate. Then therpist says, my son's strange behavior in a particular situation was as simple as what he already said. He just wanted to go home and we were going home anyway.

On the other hand, recently my son had a meltdown, crying, during a homeschool activity at someone's house and said he was simply tired. I got him home and he suddenly perked up and wanted to play on computer. If I was speculating, I'd say he was fighting the homeschool activity, which I knew was hard for him. If I take his word for it that he was tired, how do I believe him when he perks up and asks for computer time? What do you think?

Being around people is exhausting. Getting away from them and being alone again perks me right up. Being on the computer does not exhaust me. What your son said could have been 100% true and honest: he was melting down because he was tired because he had hit his limit on "face time" with live human beings. The relief of being back home revived his energy.

The way to test whether he was resisting the activity or tired from the people would be to try a similar activity of a similar difficulty level when he's home alone with you instead of around other people from outside the family and see if his reaction is different or the same.