Need some advice getting a dx in California- school

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My son is 10, will be 11 in June. The school is telling me they cannot help any more without a diagnosis. I see his MD/Pediatrician on Thursday and plan to give this to her or read it to her. Need opinions and stuff.

Corwyn has had asthma as a diagnosis since before he was 2 years of age. He at one point in time was on 10 different medications to control his asthma and allergies. He has an older brother, 10 years older than he, and a sister who is 8 years older. When he was a baby, his sister (8) liked to carry him around and dropped him down the stairs. He rolled and was not seriously injured other than a bruise. Corwyn has been having trouble in school. Every year about time for Spring Semester, we are told by his teachers that he is behind in completing his work, either due to absences from school due to his asthma, or simply because he cannot effectively complete his work during school hours. We work with him at home every year to get him caught up so that he will not be retained. His mother even home-schooled him for a year because she hoped to be able to help him.
Corwyn’s older brother, Cameron, exhibited some of the same behaviors we are going to list here, so his mother and father did not consider Corwyn’s behavior to be abnormal, “since his brother did the same thing.” In addition, Cameron was home schooled for all of Junior High School partially because his needs were not met in the public school and he had behavioral problems due to lack of stimulation in his classroom (bored, high IQ) and his inability to function appropriately socially, which led to issues with his teachers considering him to be disrespectful in the classroom. (Much like Corwyn’s problems at school now).
1. Bed-wetting and wetting pants during the day. Corwyn, at age 10 1/2, still wets the bed. We have tried all forms of things to keep him from doing so. He wears a pull up to bed, but often will wet it, take it off in the night and throw it on the floor. Sometimes he will put a new one on, Last night he wet two pull-ups and then wet the bed and put a towel down. During the day, Corwyn will, when doing something like playing a video game on the computer, go through any number of pairs of underwear because he will start to wet his pants, rush off to the bathroom, then change his pants. When Corwyn was in school he used to have problems wetting his pants during the day up til 2nd grade. This is documented in his assessment done when he was in 1st grade with Mrs. Murphy.
2. Vocalizing/Self Stimulating behaviors. Corwyn will often make what we call “sound effects” of guns, cars, explosions, and other times simply vocalize tunelessly while working on his homework or a project. While this behavior annoys his family members, he is told not to do so. He has learned not to do it at the school, by getting in trouble for doing it. However, Corwyn does do this at home, sometimes whistling over and over again, until he is told to stop doing so because it is annoying the people in the house. He does not seem to be aware that it is annoying, because he will do it regularly.
3. Inadvertently hurting people. Corwyn has played rough with his father since he was fairly young and has broken his Dad’s nose a few times by head-butting him, or kicking him in the knee or shin or genital area, not understanding that this “hurts” Daddy. He has learned not to do this but did it a great deal when younger. He likes to play a game where you “punch” someone in the shoulder when you see a certain kind of car on the road. His mother has had to teach him that it HURTS when he punches her, so that he will touch more gently.
4. Sense of Humor impaired. Corwyn will repeat jokes that he knows are funny. Often, though, he will try to make up a joke, and is not able to understand why it is or is not funny. Some puns and other subtle forms of humor are beyond him.
5. Monologues. Corwyn has a number of things that fascinate him, airplanes, and many things to do with science. He will ask his father how something works, and then later, repeat it nearly word for word. If he does not understand his father’s explanation, he will ask about details in it, and he appears to learn the details quite specifically. Corwyn will repeat what he has learned and he uses a very large vocabulary. He does not always understand that not everyone wants to talk about Halo 3 or whatever show he just watched and will talk and talk and talk. We drove to Massachusetts two years ago, and he talked and talked in the car about a game he was playing. His father and I were talking about something else, and his sister, the only other person in the car, was asleep. We asked him “Corwyn, do you know we aren’t listening to you?” “Kinda” “Why are you talking then? Mom and Dad need to talk so we can find out where the hotel is.” “Oh, OK.” He does not seem to be aware of when someone is not listening.
6. Obsessions. Corwyn has a number of obsessions. He likes Xbox games, especially Halo, he likes Naruto the cartoon, and some other TV shows on Disney and Cartoon Network, and Nintendo DS games. He will play them for hours and he will also talk about them for hours. He can tell you in minute detail exactly how to play Halo 3, the turns and twists on the “map” and what you do next when playing, even when away from the Xbox. Corwyn has played Halo for 100X longer than his brother ever did, without being bored with it. He knows a lot about airplanes, he knows about planets, and various other things he has asked his father who is an Engineer, to explain. Corwyn will read a book or magazine about how something works and how it is put together for many hours and be fascinated by it. Science in particular is of interest to him. He does not like to read fiction as much as he does non-fiction.
7. Dealing with Changes. Corwyn can stay on task for his work, but if I ask him to do something else while he is doing his homework, for example, he will throw a fit rage and rant, and in some cases, throw himself on the floor or put his head in his hands and hide his face. Corwyn can stay on task and ignore many attempts to get his attention, in fact. When he was younger we asked the MD to test his hearing because we were worried he did not hear us calling him at times. We told him the other day that we needed to go out. Dad was going to the old house to clean up and Mom was going to go to the store. Dad asked him to come along and he threw a fit. So Dad left, and Mom told him again, “We are going to go out to the store for a little bit, can you please get shoes on so we can go?” He complied and behaved quite well for me at the store, which is not always the case. In addition, if we have planned something for the day, he will continually ask, when X going to happen? What time? He wants to have a schedule and to be aware of what is going to happen. If we have told Corwyn we are going to the movies or the park, and then it turns out we cannot go, even if it is because he is sick, he may throw a fit because it is not what he had been led to expect for the day. He has a hard time changing routines or plans mid-way. He likes to know what to expect. Asking him to go back out again to run an errand after having gotten home for a brief while is torture for him- he will become very agitated and angry. He likes to be at home. Our fire and change of routine with the new house, etc, has been particularly hard on him. First because he did not know where we were going to live- neither did we- and then because he wanted to know what day we were moving in. We did not find out until the day before which was just as stressful for him as it was for Mom and Dad. (had to find out when the insurance co. would approve the rental house).

8. Behavior in public. Corwyn likes to practice his TaeKwonDo “moves” wherever he is, though he has been taught not to practice except at home or in the donjon. When we are at the grocery store, sometimes he will do his forms and moves in the aisle of the store. Or loudly vocalize. Mom will have to tell him, “Corwyn, that is too loud for when we are in public,” or, “Remember, we don’t do that except at home or the donjon.” Corwyn can be “wiggly” or moving his hands and arms around even when we are supposed to be sitting still at a performance for his sister’s choir or at a church. He has trouble remembering different standards of behavior in different places. Corwyn also does not seem to understand how to whisper. He speaks rather loudly often.
9. Homework and writing. Corwyn makes a number of the letters he writes from the bottom to the top, despite many attempts to correct this technique when he was learning to write. I have tried to help him change that but he becomes frustrated. Also, writing something, that is, composing something for an assignment can be extremely difficult for him. Instructions like “Write an essay about your vacation” are too vague for him. He needs very specific instructions and for things to be broken down into steps. And he needs to be told only one step at a time so that he can complete one before he goes on to the next, When doing his homework, he will often be ‘stuck’ on one problem. It is very hard to teach him to skip that problem and do the next one until Dad comes home, or Sister can help him with the math problem, etc.
10. Socially inept. Neither Corwyn nor his brother Cameron have many friends. Corwyn has one or two friends. Ben, a friend from his classroom, and Eddie, son of a friend of his mothers, and Jennifer, who is 18 and a babysitter. He really likes to play with kids who are much younger than him, or with adults. He does not call his friends nor invite them over, even though his mother is home and available for that to happen. Neither did his brother. Their sister however has many friends over and visits friends a great deal. When Cameron’s (older brother) sister went to high school with Cameron, he went to see more friends because they were her friends who were including him. Probably because her female friends thought he was ‘cute’. Cameron still has one friend who he met in 4th grade that he is in touch with, but not many others and most of them are friends he has met online playing World of Warcraft.
11. Following detailed instructions/multi-tasking. Corwyn’s father John is his soccer coach. Corwyn has had a great deal of difficulty learning to play soccer. IF you tell him to defend the goal, that is ALL he does. He does not appear to understand that there are times when you can take the ball down the field, or to do other things than just the one instruction. If his coach gives him a number of instructions at one time, he will shut down and not do anything. Corwyn does not know how to play soccer as a team. He plays his part of the game but does not play with the team so much as just playing his position.
12. Distractions. If he is doing his work and is distracted, he shuts down as well and will “hide”. When he was younger he would pull his shirt up over his head. This is documented in a psych assessment given by Quartz Hill Elementary School when he was in first grade. He has also been known to hit himself on the forehead though we have taught him not to do it; he claims that he does it when he is alone so he won’t get in trouble.
13. Clumsy- physically awkward. Corwyn trips and falls all the time. He always has fallen and scraped knees, etc but he will run and fall or bump himself into the wall or a piece of furniture then he will hit the furniture to “punish’ it for tripping, bruising him, etc. At times tripping and falling will cause hysterics, or when he is agitated because he’s been asked to do a chore, he may go to do it carelessly and then hurt himself and howl and cry. He can also show great balance and dexterity. If he is not paying enough attention to what he is doing, he will hurt himself. For example, he likes to drop kick soccer balls. He practices over and over again until he could kick the ball over our (one story) house. But that is the only aspect of soccer he totally enjoys.
14. Taking things apart, learning how things work. Corwyn really loves several toys. When we had the house fire and told him that he needed to choose some toys from his room to take to the hotel, because the rest of themnwould be packed away for three months. He took his Xbox, and some Legos and a couple of blankets he is fond of and then said, “I’m done.” That fast. He can also play with his Legos, creating new types of ships and aircraft for hours. Or, follow the instructions to assemble a complex Lego System.
15. Socially inept- Askng for help. Corwyn is not good at asking for assistance. When he is doing his homework, he cannot ask for help. He will become frustrated when doing work, and will crumple up the paper and throw it or rip it up, or scribble all over it to destroy it because he does not understand the work. He will get violent and throw things like his pencil or whatever is on the table may be pushed onto the floor violently. If I sit with him and help him do his work, and when it becomes apparent he is stuck on a problem or his work is slowing, I can ask him “do you need help with this one? “ or, “how do you do this problem.?” And then he will either show me how to do it like an expert, reciting the Standards for the problem that he knows from his Standards page, or he will say that he does not know how to do the problem. RARELY will he ask for help with the problem without prompting.
16. Abnormal- We told Corwyn that if he did not catch up on his work, he would be held back at school. He did not respond as we expected. He was not upset. We said, “But your friends will all go to the next grade and you won’t.” He said, “I’ll make new friends.” His father was disturbed by the fact that he simply dismissed the friends he has now.
17.

Corwyn’s maternal grandfather has Asperger Syndrome.

Since you're in California I would contact one of the Amen Clinics for a preliminary interview as it doesn't cost much. The doctors in Fairfield are excellent but they have two or three other campuses in the state.

Well, first off, I would edit your post if I were you. Your son has an unusual enough name that this thread would probably pop up in a google search. Things on the internet tend to stick around a while, and I would hate to think his future employer might see a thread pointing out all the flaws he has.

Second, none of us here are qualified to diagnose your son. There's really no point in listing off all possible diagnostic points he might have, as this has no relevance to how we can help you.

Now, in the area I can help you: trying to find someone to diagnose. Your pediatrician should be able to offer you some local child psychologists capable of making such a diagnosis. If you feel limited by the selections your pediatrician offers, you can explore other options in the post "Recommended Clinicians" that's at the top of the Parent's page. Personally I will recommend the TEACCH center in Chapel Hill, NC, since they are the closest thing to a dedicated autism center I've found in the US. Keep in mind you may have to travel to find someone well-qualified, as diagnosing autism spectrum disorders is a relatively new specialty. 15 years ago most psychologists didn't even know what Asperger's was.

Ditto on the name thing. use a generic name. You need a professional diagnosis. And then to sit down and work up an IEP with the district - which they will NOT do without a formal diagnosis.

Outstanding Observation - This just pokes me in the eye like a sharp stick, what you say at the end. Your partner is upset because your son writes his friends off with "well, I'll get new friends"... sounds like your partner's problem, not your son's. I wouldn't try to use emotional manipulation to get him to do what you want. It won't work, primarily, and it's... well, I wouldn't do it.


Some other notes on your very detailed post:

Being dropped by his sister did not give him Aspergers.

Am confused. You talk about this as your son, and in the text you say that "his mother home-schooled him" and later "his parents".... Are you not his mother/parent?

If he misses a lot of school, of COURSE he's going to be behind. That's a given, and if it's asthma-driven or for any other reason he's just going to have to either catch up (if at all possible) or just run a little behind. As long as he eventually finishes that work, he should be ok academically. The goal is to get him educated. If it takes longer, then it takes longer. Nothing wrong with that at all. In my family, persons on the spectrum tend to emotionally mature a little later - hence, someone who is 21 chronologically can really function in society more like an 18 year old. But by the time we hit our late 20s, we're fully functional. Don't rush the kid. The end is what you're looking for, and imposing an artificial time frame isn't necessarily going to help you.

Bed wetting - I assume you've had him thoroughly checked out by a urologist and a neurologist? And restricted the fluids before bedtime, etc?

Sound effects - they can be emotionally or intellectually soothing, he may not realize he's doing them. When he no longer needs the soothing, they will stop. Alternate could be that he just doesn't care, but I doubt it at age 10. Give either him or yourselves headphones.

Hurting people - this needs to be a zero-tolerance, immediate repercussions situation. If he cannot gauge his hits, he needs to NOT hit. At all. Immediate negative consequences are pretty much the only way I've ever seen work with anybody like this. (Immediate time out, having to come out of the time out explaining why they were put in it - a detailed discussion, not just a "because I head-butted Dad too hard.") If he can't explain it, you may have to drop the consequence down an intellectual notch, to something that will have an impression on him and work as reinforcement. What works is something you'll have to sort out.

Humor - Watched Monty Python lately? Nothing you can do about his sense of humor and not understanding it. Just accept it for what it is, an attempt to humor you. An attempt to intellectually interact. To play with concepts and words, if nothing else.

Monologues - perhaps has a future as a professor. No, I'm serious. And he may not be talking for your benefit, but for his. He may be practicing. I'd say ignore it unless it's something you just cannot bear. Refer to headset comment, previously made.

Obsession - perhaps a future as an engineer, then. I'd suggest getting him books about his obsession and then things remotely related to his obsession (like how they created Halo and how to program a computer.... you might groom yourself a systems analyst). I LOVED science as a kid. Obsession is a close enough term for it. I grew up to be a secretary because in that day girls were not encouraged to pursue things scientific. (I still love TV shows dealing with a wide variety of scientific topics.)

Schedules - yes, we do that, too. The need for them has decreased over time in both my life and my kid's, although she, as a young adult, still doesn't like change and it makes her very uncomfortable. When I was 20 if my car had a suddenly flat tire it would throw me for an emotional loop for a week. We're talking serious, crying-jag, the world-is-gonna-end paranoia. Now it's just an annoyance. I suggest making schedules and making alternates. That is, if A does not happen then we'll do B. I would also do pre-emptive moves. If there's a chance you won't be able to go to a movie (for example), start prepping him for that outcome as soon as you know. Schedules help put coherence and sanity on what can seem to be an insane world. Don't try to take that from him - when he is older, hopefully he'll be better able to cope with change. Maybe not. But allow him this so that he can deal with the other aspects of life. He asks for repetition so he can put structure on his world. Trust me, the world is a damned scary place without structure.

Public behavior - think of yourself as the broken record (I wonder if that even translates to today's culture?) - repeat, repeat, repeat, repeat, repeat.... and use logical consequences. If he knows in advance that he'll immediately have to go to the car if he does XYZ and sit out there with a ticked off parent while the other parent finishes doing whatever is happening, it may work to reduce the behavior. Or it may not, but it's worth a try. Whatever you do, don't just be a "no, no, junior, that's not nice" kinda parent who just repeats with words with no meaning/tone/inflection in their voice and does nothing whatsoever else about it if the behavior does not stop. He's got no incentive to change, and will learn to ignore you if you are that way. Because what you say has no ramifications for him. And it makes the people around you want to draw-and-quarter you.

Homework/Writing - use whatever works. If he needs to write in a different manner, but has a decent outcome, let him. If handwriting is just too tough, get him a keyboard and let him type. Handwriting was such a misery for me - and I got marked down on papers that had very good content because I have dysgraphia, trouble handwriting - that it caused more stress and misery. For many years. Life is stressful enough as a kid, why make it worse? A keyboard would have solved that for me immediately, and let me work on the intellectual side of the process. On the vague instructions. Oh, lordy, yes, that is such a major annoyance. At 10, though, I think that even NT kids are learning how to figure out what to write. Work with him to try to think around the question - what would the teacher want to hear? (If he doesn't know, make some suggestions.) Where we went? What I did? (list three things). Did I like it? (why? list three things), would I recommend it? (to whom? list three people) why? (any reason). I don't think many 10 year olds are all that capable of writing essays. He'll just have to learn using whatever system works best for him. Try different approaches and see what does work. On the "skip a problem" you can make a rule - print it neatly on a sign and put it by his desk. "If I have a problem, ask for help." "If I have a problem and I've tried everything I know how to do, go to the next problem." Maybe give him a "problems" folder that he can put a note in to remind himself of the thing later? Try a wide variety of things, see what works. Use WHATEVER works. I am a visual kind of person, so I do lists and they tend to be color coded. Lists got me through graduate school. He may find them helpful, or totally useless. You'll have to explore WITH him and find out what works best for him.

Socially Inept - Does he want many friends, or is it that you want him to have them? If he's unhappy with his friends, then you can help him. If he's not, then back off. It's his life.

Soccer - yep, unclear instructions. Has anyone told him he can do all of those other things? If he can't handle all the instructions at once, I suggest finding another sport. Something you learn a little at a time. And where he doesn't have to keep track of all those people running around at the same time.... Fencing did wonders for my coordination, although it took a long, long time and I'm still a klutz. Perhaps gymnastics? He likes martial arts - perhaps working with someone who understands his eccentricities would help. Did he want to play soccer, or did you put him into it? If he doesnt' want to be there, please don't make his life a misery by forcing him to be there.

Taking things apart - yeah, my mother was mad at me for years for taking her vacuum cleaner apart. And the TV. And the radio. And almost anything else I could get my hands on. I loved blocks, as a young kid. And always wanted a Gilbert Erector Build-it-yourself toy, but never got one. (They were for boys.) All my later aptitude tests said I'd have been a great engineer. Or an auto or machine repairman. Could have made a good living that way (had I been a boy....).

Aspergers is thought to be genetic.


Final suggestions - there's always more than one way to get to an endpoint. Don't let yourself get locked into the "he has to do it this way" because "that's how it's done" mindset. Reward and encourage whatever works. And then try to remember that if everyone marched to the same drummer, it'd be a damned boring, miserable, bland, nonproductive world.

You have to try very hard to remember that your son is an individual, not a clone of you and your significant other. I run into parents all the time who are disappointed that Suzy or Johnny isn't a star athlete or academically brilliant or a social butterfly. And it's always made me sad. I want to shake them by the shoulders and say"YOU do NOT get to choose who your kid is. That's already been done - the genes are already there. Respect, Love, Honor, and be Happy you have a child at all. Encourage whatever they have that are strong points, help them overcome things that will stand in the way of them being happy, fulfilled adults on their own terms (not yours!)." But I never do....

First thing - get him a proper diagnosis. Then demand an IEP. Good luck. Really.


PS - You might want to have yourself tested for a spectrum disorder as well. Just to see....

Last edited by Nan on 27 Jan 2009, 3:41 pm, edited 1 time in total.

Even though no one can really know based on an internet description, I will say that your comments about transitions, expectations and coordination issues do all sound like AS. We were fortunate enough to get a school use diagnosis from my son's school, so I haven't had to go outside of school, but that appears to have been unique to the one specific IEP team, that they were willing to do that.

I also will point out that the bladder control is probably a separate issue, and a medical one. I would assume a doctor has been consulted about this. Try not to make the boy feel embarassed about it, and try to ease it as much as possible. Problems at the rate you described are not within the range of normal, nor do they appear to involve willful defiance.

The one thing that can be done without any diagnosis of any sort is to figure out what the child needs, and to give it to him. We're not talking about giving him everything he wants, but everything he needs, and the core to that right now, in the wake of all the changes he has been through, is structure, consistency, and a chance to be himself. If he needs to make noises to do homework, let him make noises. To be what you aren't 24/7 is unrealistic. My son does the act for school, but is free at home, with the exception of safety or hygene issues. It has made a world of difference to him to have that; we used to try to control his behavior everywhere. We no longer do, and that freedom makes compliance when it is really needed easier for him.

Yes, you will need the school on board to get accommodations for the educational issues described in point 9, and you should pursue a qualifying diagnosis for that purpose. IMHO threatening a child with being held back won't work; it sounds like he is under a lot of stress, and the concept of spending a year doing what he already knows how to do may come accross as a relief to him. My AS father - a VERY smart man - was held back a year when he was young, and he claims to have brought it about on purpose. He was tired of being the smallest, and that was his solution. Point being, kids can hold funny ideas in their heads that they won't verbalize, but that address very real worries. Finding that underlying worry can go a long way to figuring out the best resolution, but it can take a master detective to get there.

I wish the both of you the best. Meanwhile, read around the boards, see if you can pick up any helpful insights, and tune into the child best you can.

I just wanted to echo what was already said about the bed wetting probably being a medical issue, and having him thoroughly checked out by a medical professional. As well as the asthma...both of my sons have severe allergies and asthma, and I realize that the standard of care for these varies widely. But your son should not be missing vast quantities of school due to asthma! Please ask for a referral to a paediatric respirologist if you haven't already done so, or get a second opinion from a competent allergist. There are many different meds, therapies and trigger avoidance measures that can be explored. Your son needs to be able to breathe and feel well, before he or you can really start working on the other behavioural issues.

Unfortunately, I cannot edit the post any longer. This has been a major battle with my son's school. Yes, to the others, I am his mother- I need to edit that statement better. We met with a Pediatric Neurologist who asked us, "Do you really want to label him?" And he suggested we consider "Benign Neglect" instead of a dx. The problem I have, is that the school is requiring a dx to give him accomodations and taking 3-4 hours a night to do homework and spending ALL his recess times inside making up classwork, is not a good thing for him.

Every morning I have to coax him to go to school. Before I get told to home-school, I tried that, granted, I treated him like his NT sister and his brother (who I think has AS but is a good independent learner), and was pulling my hair out because he can ONLY work on something he does not like/understand if I sit with him darn near every minute. I could not even do housework, wash dishes, feed the dogs, without him getting distracted and stopping work.

He can make noise at home all he wants IN HIS ROOM but if he is too loud he is asked to be quieter.

And yes after reading a book on AS I am thinking- gee, a lot of this sounds like me.

Interestingly that your neurologist asked you if you really wanted to label him. I don't know what to say about that other than - why on earth would you bother going if you didn't want to know what the heck is going on, right?? I'm sure the doctor meant well because a lot of insurance companies won't pay for therapy for an "autism" diagnosis...but the bottom line is that in order to get through school, ESPECIALLY here in California, you're going to need that letter labeling what is going on with your son. That much I know for sure because it makes getting an IEP way easier. We're going through that process right now.

Anyway, I hope you are getting through the process OK. It's a tough road at times!

While I understand the nueropysch wanting to be sure you understand all that comes with labeling, I think that it is what you need to do. From what I've read from you here your child isn't going to be able to thrive without some accommodations and assistance, and getting those requires the label, so, yes, you really do want the label (assuming it applies, of course). You tried things without the label and they are not working; I don't see you have other solutions at this point: you need the label.

Our school district was willing to make a tenative diagnosis for us, so we were able to skip the formal medical label, but I've come to see our district as an exception on this. We happened to have a staff pyschologist very familiar with AS, and he went a bit above and beyond, for which I am grateful. I am absolutely certain at this point that he called it right; I wasn't at first, when it was suggested, but I am now.

That they cannot provide a diagnosis, that I would have to take him to a doctor. They also told me they could not make further accomodations without a dx. They have put us off and put us off on getting him help.

He has to stay in EVERY recess and do his extra work that he did not finish in class. He never gets to play unless he blows off getting work done because he cannot complete the amount of work they give him in class. Then he comes home and spends several hours every night trying to do the homework.

He tells me he hates school and does not want to go. It breaks my heart. The Doc wants us to take him to a Psych for some tests and I have to make the appointment. I just think that the school is going to BS me until I do something more. I spoke to someone at Board 10- a disabilities board who told me to hire an advocate. But I can't find one to hire to go with me to the Child Study Team meeting. (sigh) I feel like I am treading water and trying not to drown and not keeping ahead of them.

I remember that feeling, before we pushed the right buttons and got what we needed. It's easy to forget now, but there were three years involved before the first signs of a problem and getting a fix in hand. And I still consider us very, VERY lucky! It is much more difficult for most people.

Do NOT give up. Get the professional evaluation. It sounds like the SST isn't going to go far without it, so get it as soon as you can.

In the meantime, have you talked to the teacher about adjusting your child's workload? Without an IEP the teacher is not required to, but that doesn't mean the teacher won't. My NT daughter's 3rd grade teacher, for example, noticed that her work speed was a little slow and started accommodating accordingly. As she said, she isn't allowed to assign more than 30 minutes a night of homework, so as long as we parents will sign off that our daughter spent at least 30 minutes working hard, the rest is forgiven. It's actually a great tool being able to time out the homework, because it teaches kids to get down to work and stay focused. They know when the end will be. The funny thing is now my daughter will work for an hour straight and usually complete everything before she wonders if she can be timed out. It worked that way for our AS son, as well. I would definitely talk to the teacher about it; as long as they know parents are actively involved in the child's education, the teachers should be responsive.

As I said in my previous post, we are going through this IEP process right now so I do know what you're going through. It's not easy, and I have to admit that I spent a lot of time second guessing myself and the diagnosis before I ever did anything about it. That probably wasn't fair to my son, but I just didn't want to go in and have to start the IEP wheel turning before we absolutely needed to.

In any case, before we ever even requested that our son be evaluated, we worked with his teachers. Every September I would go in to his new teacher and explain what having HFA is like for my son, in hopes that his teacher would work with me. Some have been fabulous about it, and a couple were just so-so. In every case though, the teachers were always willing to make some accommodations for him. This year, for example - my son is in 4th grade and at our school, cursive is a very big deal. The students are required to do everything in cursive - but my son is not. Originally it was the hope of the teacher (and me, to be honest) for him to continue working on it and eventually be able to do all of his work in cursive. Well, that has since been "scrapped" because he just has such a hard time with it, and quite frankly - we've got other things that are more important to work on. So, even if you should choose to hold off on the IEP, or even if your school doesn't agree that he needs an IEP or refuses to evaluate him - it is possible that the teacher might agree to work out some basic accommodations for your child to help. That might just help enough so that you can focus on getting a formal diagnosis for your child in the meantime.

So far at our school - we went into our School Study Team meeting expecting a fight. As it turned out, we were pleasantly surprised to find that they were willing to do the evaluations. His teacher was a lot of help because even though I had a formal diagnosis letter backing up what I was claiming, she agreed with our decision to seek an IEP completely. Apparently my son had been starting to show some anger out on the playground towards other children - something that is not in his character at all and something that he had never done at school before. Up until then she had felt that he only needed a 504 plan. I didn't agree with her and was willing to go the distance to prove he needed more help. Anyway, we are starting the evaluation process now, and I have high hopes that my son will be able to get a little bit of help in the areas that he needs, along with some accommodations that should really help him to be more successful in general.

One other thing I might add that I've learned so far in this process - in the state of California, they do not recognize Asperger Syndrome as a disability that would require services. Autism is on the "list"...but not Asperger Syndrome per se, even though Asperger Syndrome is clearly "on the spectrum". That said, having a diagnosis that puts your son on the high end of the spectrum (like High Functioning Autism) can sometimes be more helpful than a diagnosis of Asperger Syndrome, although - if your child meets the criteria for autism, then he should still be able to receive services. It's more about semantics than anything else, but our state is a little "slow" to include PDD-NOS and Asperger Syndrome on the spectrum for educational purposes.

Interesting. My son's IEP simply states "autism spectrum disorder" as the qualifying factor. The title of Aspergers isn't on the paperwork; it's just what we were told was the actual likely diagnosis. Basically, we had an IEP team that came to the realization my son needed services and they would have picked anything that halfway fit to get him them.

It sounds like your IEP team knew exactly what they were doing then. At least that way with his being labeled on the spectrum, there's not much chance of his being denied services if you were to move or something. I never knew that about the state of California until I spoke to a family member who is a special education teacher here in So CA.

Hi,
I'm in cali too and they do use the Autism catagory for Asperger's etc. Maybe it's just your school that has an issue with this? IF so there wrong.

As for homework help, how about you talk to his teacher about doing homework for mastery? If he has a huge page of math problems, and gets the first 5 right, then he can move on? Same with the other homework. IF writing is a problem, let him use the computer to type the answers. Scribe for him.

I'm not sure where in calif you are, but look up a Regional Center near you. They can dx and it's free. He might not qualify for services (it's very hard to if you high functioning) but you can get a eval.

You know I do have to say something is fishy if the school won't do anything else without a medical Dx..... Thats just simply not true. A med dx and an educational Dx are two totally different things. I know of people who have med dx's and their kid still didn't qualify for an IEP.

And in the future if you need and advocate, first try to see if you can get another parent to go with you. If it turns out to be you need a more professional one that you pay, then check out the yellow pages for kids on wrightslaw.com. It's a great site with lots of information on Sped Ed and the law.

Yep, my kid only has a school diagnosis and they worked up an IEP for him. They had to do something; he kept having meltdowns and I didn't know what the heck to do.