Re: Meltdowns and intro really long, sorry

[Guest guest]

Hi Debbie and all,

I just joined this group recently and haven't really introduced myself. I'm going through a very emotional period regarding my autistic son and it's kind of hard to write it down. However, your question about the anger issues is one of the main reasons why I decided to look for groups and find out what others are doing to help their children.

My son was not diagnosed with autism spectrum disorder until about this time last year at age 16. He is our only child. My mother was convinced (rightly, we now know) that he was autistic when he was about three. At the time he resisted eye contact, like to spin, jump in place, was obsessive about vacuum cleaners and would clap his hands over his ears if we were in a parking lot and a car engine started up (even quiet ones). On the other hand, he was very verbal, and talked constantly in some sort of personal language before he learned English. The cadence was English, but we couldn't understand any words. He was clearly having imaginary conversations though. To this day he has imaginary conversations with himself.

When he was three we took him to a specialist to find out if he was autistic. He had him do some simple tests and talked to him and us. The doctor concluded that he was not autistic, but added that he might be ADHD, but did not like to diagnose children with it at three. In retrospect I think I may have prepared him too well for that doctor visit. Stefan was always very curious about where we were going and what was going to happen. Now I think that is anxiety, but I thought it was curiosity then. He looked the doctor right in the eye and was very cooperative. The big thing that swayed the doctor was when he found out that Stefan had a little bicycle and he could ride it (albeit with training wheels). He said autistic children weren't usually coordinated enough, especially at three. As it turned out, he had good gross motor skills, and poor fine motor skills. He is good at skateboarding and terrible and tying his shoes and handwriting.

When Stefan got to kindergarten the teacher requested testing for speech and he was given speech therapy through 7th grade. There are still some things that he doesn't say right--d for th--but his speech problem was slight enough that people and even some of his teachers were surprised he was in speech.

When he was eight he began to exhibit anxiety after the death of my grandfather. This began a series of doctors and psychologists and he was diagnosed with GAD (generalize anxiety disorder) with components of OCD. He would ask us sometimes dozens of times a day if we knew he loved us "even though I don't know." After we found the right antidepressant and dosage this got better and he had less anxiety. We also noticed that he had trouble interpreting people's actions.

He's not the kid that has other kids tease him and he thinks they are friends. He can recognize that. He's the kid who has someone say something perfectly innocent and takes it very personally and thinks he's been insulted when he wasn't. Of course, when he is teased, he's takes it too hard as well, and is unable to tease back or blow it off. He is having trouble now with kids meowing at him and calling him cat man (we have seven cats, all dumped in our neighborhood). I told him to bark like a dog and then laugh or smile and they would quit but he just gets mad at them. He takes some teasing at literal face value, not realizing it is teasing.

Later he was also diagnosed with ADHD, although with him it was more lack of focus without the hyperactivity.

We recognized that Stefan needed to be socialized and did a lot of things that we would have done if he's been diagnosed with autism earlier. We did Kindermusik for a couple of years and preschool. I took him to mother's day out before he started preschool so he could get used to being around other children and having group activities. Later we did cub scouts. He didn't really like it, but he did have some friends in the group. We did karate. He was good at it, but did not like the sparring. He did not want to hit other people or especially be hit. He did it for about a year. We had previously done fencing (I teach at a fencing club) but he wasn't really interested and didn't like the occasional hard hit. His medical doctor said he thought he felt pain more intensely than was normal, probably because of his ADHD. We also did some basketball, baseball, and soccer at the YMCA. Stefan just wasn't interested in sports, except for skateboarding. He started that when he was 8 and still does it. It's his "special interest" along with filming video of skateboarding. We also had him in a group with a therapist with other boys who all needed help learning how to be social.

Stefan did well in school although this took a lot of organizational help from us especially starting in Middle School. He was on Concerta and that helped his focus a lot. At the request of his 4th grade teacher we had him tested for dyslexia. At that time it was negative. In 7th grade I requested that he be tested again after doing a long term sub job for the MTA teacher at the middle school. (MTA is the special reading class for dyslexic kids at our school.) I saw that about half the kids were doing things the way Stefan does, especially in spelling and pronunciation. This time they said he was autistic, and that the first time he had been smart enough to compensate on the test, but that it showed up now because the level was harder.

Anyway, on to the meltdown problems. We didn't have much discipline problems with Stefan through middle school. The teachers always complimented us on how polite he was.

Then he started High School. I feel like we were completely blindsided by the change in him. While he still had some A's and B's some grades went way down to barely 70, especially if he didn't like the teacher, or some kid in class teased him. Also, the level of work and reading required was much harder for him. He began to have behavior problems, mostly putting his head down on his desk, and he cursed some kids who said things to him. He started being rude to teachers. He said no when they asked him to put his head up. Then he started just leaving the room when they asked him to put his head up. He would go to the office (without the teacher sending him) and sit until they had time to deal with him, which meant he missed several classes. He got into a couple of fights, all starting in the lunch room, usually with someone hitting him with food. Fortunately these were push and shove fights because an actual fist fight gets you carted off to the police station in handcuffs in our district.

He would get very angry over the teachers talking to him. You couldn't reason with him at all or even talk to him when he was angry. He would fix on one small thing and would not get his mind off it. He also started to get angry with us at home and started to have meltdowns at home. In retrospect I guess he had a couple of meltdowns when he was younger, but it was not any where near the level it was in high school.

The vice-principals at the school are all assigned as discipline officers to a set of kids and they keep the same set throughout the kids time in high school. His discipline officer told me that they spent all day dealing with anger issues the high school kids had. I took this to mean kids in general. Her method was if she needed to talk to Stefan about something that had happened was to mention to him (privately) that she had talked to so-and-so and they needed to talk about it and there would be consequences. Then she would say that she'd talk to him later in the week about it and walk off. By that time Stefan would have gotten over being angry and they could actually talk about it.

There were a couple of teachers that wanted him out of their classes, and we wanted him out of those classes too, but there was no way to change his schedule due to the limitations on the MTA class. The teachers he had the most problems with were also the ones that we had constant problems with because they wouldn't follow the plan for his dyslexia. I'm not saying that the problems with the teachers was all the teacher's fault--but they were hard to get along with. I made a point of not letting Stefan know that I felt that way though. We had a meeting scheduled with the school and I think they were going to want to place him somewhere else, either the alternative school or gaep (for kids who behave badly or have been charged with a crime). I couldn't see him getting an education in either place. He was terrified of the alternative school because of the rep it had for being full of gang bangers. We withdrew him from school and began homeschooling him with the support of his doctor, who wrote a letter about the level of stress school was causing Stefan. This was six weeks before the end of his 10th grade year.

I felt that Stefan had an undiagnosed problem that was not being addressed. He behavior change after going to high school was so different from how he had been before. I took him to a pediatric neurologist in June of last year and he was diagnosed with autism spectrum disorder.

When he was first diagnosed I was kind of relieved that we knew what it was, and that it wasn't a brain tumor or something. Later I got depressed, and still do sometimes, because autism isn't something you can cure. On the other hand, we are all so lucky that he is high-functioning. We are lucky that he has actual friends, although I don't like it that they don't seem to have any ambition in life. Most of his friends are outsiders of some sort, which is pretty much what Stefan is. I believe that he will be able to get a job, but I fear he won't keep one long. And if he doesn't get his anger issues under control I fear he will be in jail at some point, or maybe the mental hospital. He has not been physically violent toward people when angry except for one fist fight, but has verbally threatened them and threw a stone through his dad's car window. (no one inside) When he gets angry at one person he takes it out on everyone around him. This will keep him from having a successful friendships or relationships with women.

I think puberty is bad for autistic people. It's stressful enough when you don't have any extra problems. I've noted when I sub that many of the other autistic kids in school develop anger issues during puberty, and some even hurt themselves by biting and scratching themselves. I wish we had known this was coming so we could have gotten some training in dealing with anger ingrained into Stefan before he hit puberty.

One thing that has helped is medication. He was on Abilify, but discontinued it because of side effects (he could not regulate his body temperature in cold weather--it aggravated his Reynaud's syndrome to the point that I was worried about amputation). Now he is on the lowest dose of Invega. He was on the next highest dose which helped with anger issue more, but we cut back due to side effects. When he was diagnosed by the neurologist she looked at his medication (concerta, celexa, and invega) and said it was spot on, and that those medication were known to help autistic people.

Last fall I thought maybe he didn't need the invega and with the doctor's approval we took him off it for a week. It was terrible. He was angry over nothing and everything for the entire week. You could say good morning to him and he got angry. His ex-"girlfriend" (they had a MySpace romance for about three weeks and are still MySpace friends) broke up with a boy who was apparently nasty to her during the breakup. Stefan got mad about this because the girl said she wanted to kill herself, caught the boy in the high school parking lot and punched him. We got an official criminal trespass letter banning him from the high school.

Stefan will be 18 in a few months. He is just now learning to drive. He was too anxious about driving before and I was happy to delay it. He is very immature for his age. We are enrolling him in the alternative school next year to finish his high school. The homeschooling went well but he is getting bored with being at home all the time and I need to go back to work because we are losing one of our other sources of income. They have a new administrator at the alternative school and we like him very much. My teacher friends have told me it is good there now. I know a couple of teachers who have even put their teenagers in the alternative school and they are pleased with it. Discipline is better there than at the high school. The work is self paced and there is no homework. We spent two or three hours a night trying to get homework done before, which was HELL. Also, every kid at the alternative school is getting a laptop and the teachers are getting smart whiteboards. I think the laptop will make it easier for Stefan to do the work, especially since he can type but has trouble with handwriting. Stefan is interested in it because a couple of his skateboarding buddies are going there next year. He is also getting interested in getting through with school and getting a job. I'm hopeful that he can finish his education there. We would send him to college, but at this point in time he is not college material. If he was really motivated to learn I think he could do it, although the dyslexia it a real problem. He doesn't care about school work though. His IQ has been tested and he is normal.

Stefan has stopped taking the concerta a few months ago. He has expressed a desire to get off medication as he feels he will not be able to afford it on his own. (I'm told the new health bill will allow us to keep him on our insurance through age 26 but I don't know the details.) I think it's good to evaluate the medicine periodically, and we are doing this under the doctor's direction. He recently weaned off celexa, an antidepressant. I have noticed a slight increase in anxiety. Stefan feels it is something he can handle it doesn't seem bad enough to warrant medication. I'm not sure if we are going to try to go off the invega after what happened last time. We are working through a work book on anger but I don't know if it will be helpful. Stefan is very angry about the autism diagnosis. He says that he is not going to be autistic, he wishes he never knew, etc. He says he is fine. He has only told a couple of people that he is autistic. They are still friends with him but they didn't have a clue what autism was and Stefan couldn't explain it to them. I would like to train him to advocate for himself but at this point I can't even talk to him about it. I would like to have him be able to explain to people that it's a problem with social communication when he tells someone. Part of his anger is because he doesn't really know what it is himself. I didn't realize until recently, but he thought it meant he was mentally challenged. He thought it meant he was "stupid." (his words) He's so angry about it that I can't teach him about it.

I would like a short quick definition that he can tell his friends. If anyone has any ideas about this let me know. They call him to skate with them and like being around him, but they also tease him about his differences. I think they might cut some of that out if they knew about the autism.

Stefan gets very embarrassed because sometimes when he is in a good mood or excited about something he will jump up and down and flap his hands. He says he isn't even aware of doing this at the time. Of course, the kids he is around think it's weird.

Sorry for the length.

From: Astrid

Sent: Tuesday, June 15, 2010 4:48 AM

autism

Subject: Re: Meltdowns

Hi Debbie,I am almost 24 with autism (verbal and high IQ though). I've had meltdowns since I was about 6. I can't remember whether mine got worse during puberty, but that might be wha tis going on with your son. I would say get him evaluated by a behavior specialist, who can determine what hte cause/function of the behavior is. It could be that he's having more anxiety or somehting.-- Astridastrid@...http://www.astridvanwoerkom.com/http://astridvanwoerkom.wordpress.com/