I don't know where to turn

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Hi everyone,
I'm new here and found these forums on one of my many internet searches trying to find an answer for my son.


I have known something was off with gavin since her was 18 months old. He is 9 now and in the 3rd grade. When he was a toddler he didn't talk as much as others or seem to make connections as fast as other children did. He potty trained very late and had a bout of encopresis (coinciding with my divorce from his father) until he was 6.

He is so different in social situations, a bit awkard, doesn't like sports etc. He often seems in his own world. He stays in his room a lot and I hear him talking to himself. He was fascinated by states and maps for a couple years and knew every state's capitol when he was in Kindergarten. Likewise, he knew every child's birthday in his preschool class. He is very smart but doesn't test well at all.

I know I am throwing alot of info out quickly..lessee..he was in class with the same little boy since kindergarten and was very close with him. Last year, this boy started hanging out with another friend and it tore Gavin apart so I asked they be seperated. He would shut down if his work looked overwhelming and would meltdown alot. This year (3rd grade) we tried him on ADHD medication hoping that was it. It made his mood so eratic and when he got upset he would spiral down into this self hating mess. Most of the time his affect seemed flat unless he was angry which seemed to be alot and over little things. We discontinued the meds after trying 3 different ones simply because I could not sit and watch him destruct.

His behavior seems to be worsening. When he gets angry he clenches his fists and makes this awful face and it's over little things. He has to leave the classroom almost every day to go calm down. Kids have started to figure out how to push his buttons and do things to make him angry since it's funny to them to watch. When he is angry, NOTHING cheers him up. He says things like he hates himself and his life and that his life is over. I am so scared for his teenage years that he will become suicidal. He sees a counselor who says he has anxiety but I see so much more than that. Neither he nor the ped seem to want to touch the idea of Asperger's and it feels like everyone is just dragging their heels while my child self-destructs and alienates those around him. Kids stay away from him now.

I just feel hopeless. He gets good strategies for dealing with anger while at the counselor but can't use them when he gets to th epoint where he needs them. So I guess I just need some comraderie. I can't tell if he has Asperger's, bipolar (he can BOUNCE off the walls and then get very sad and cry and not know why he is doing it), have massive anxiety, OCD or what. I, myself am a school counselor which makes it harder for me since I don't have any answers. What does it take to get him diagnosed???

Sorry if this seems choppy. I have my wrist in a cast after surgery so I am typing as much as I can before I have to stop from the pain. I could write 5 pages otherwise. Does any of this sound familiar??

It sounds like your son is experiencing a lot of anxiety. Whether that is due to Asperger's, bipolar, or something else, no one on this forum can really say. Nine is a very tough age - kids are starting to get old enough that they are much less tolerant of differences, and they are often starting to hit adolescent hormonal changes as well. Combine that with the immaturity of a nine-year old, and it's very hard.

You, as his parent, should not be diagnosing him, regardless of your profession. If the school isn't doing it (and personally, I would stay away from a school diagnosis anyway, since school psychologists tend not to be the best, from what I've seen), if you can afford it (or your insurance covers it), have him privately evaluated by a qualified psychologist with extensive experience in all the areas you suspect (bi-polar, ASD, anxiety ...). Make sure it is someone who has experience and willingness to participate in IEP meetings with the school. Also, make sure that it is part of the evaluation for the psychologist to observe at school. If the psychologist omits the observation, the school can refuse to consider the evaluation in planning for your son's needs.

Unless the pediatrician is all but certified in child psychiatry or neurology, and/or has extensive experience with ASD, s/he is probably not the person I would count on for a diagnosis (or ruling out) of an Asperger's diagnosis. Similarly, the counselor would need to be highly qualified in this specific area to make this call - but they could be right. That is why you need someone who is an expert to evaluate your son. The bottom line, however, is that you need help for your child, strategies that will work for him, and possibly medication (if necessary) to alleviate his anxiety. The actual diagnosis might be secondary to addressing his specific needs, if you can meet them symptomatically. The diagnosis would be nice for an explanation, but an explanation doesn't always solve anything. It might help, but it sometimes confuses things even more ... you want someone who can provide useful strategies and assistance. If your current counselor is not doing that, you may want to find someone else.

when you say that he has to leave the classroom almost every day- does he have a behavior support plan ?.........how much time is he spending out of class ? what interventions are they using to keep him on task ? ..........these are all questions you should know the answers to- if you don't know the answers, then I suggest you start asking the teacher. your child, regardless of his disability, has the right to a Free and Appropriate Public Education- excluding him from class is not educating him.

re: his dx ?.... can't really say.....I'd take him to be evaluated- a good doc can help you sort out what is just being a 9 year old boy & what is really of concern.

good luck

I am concerned that SOMETHING is negatively affecting him, and I would start the process of trying to figure out what. It could be AS, it could be something else. Has the school said anything? Any child that is having to leave the classroom daily should be considered by a study team for evaluation or support. Definitely do your own reading, and follow your own instincts, and then push wherever you need to push to make things better for your child, whatever that will end up meaning.

I'm sorry for being so very unspecific, but it's hard to know sitting here without knowing your child, and given that I'm not a professional when it comes to any of this. And, honestly, the best road to take varies so widely depending upon where you live and what the professionals you have access to are like.

My 7-year-old was assessed pretty quickly but my 11-year-old not so because her problems are less disruptive to others ( my personal assumption and one that is a big motivator to schools; they talk big about "individual educational needs" but just ask them to accommodate someone whose needs aren't in the budget and see how individualized they make things). My son (7) was having less trouble than yours is, it seems. That tells me that your kid's school doesn't plan to take any responsibility for helping him adapt.

So I first repeat the advice of my sister: get yourself an advocate. I never got one, maybe foolishly because I have 2 kids with problems. As I understand it, the school has to come up with one if you ask, but that is when the kid is in the process of being assessed already. I also believe that some law firms have particular members who specialize in this kind of thing.

There is also the possibility of getting your own work-up done. If your doc won't refer you to the right people for it, you have to insist or get a better doctor. No doctor should brush aside parental concern. You don't even have to mention Asperger's though. Just say you want a psychological evaluation by people who have expertise in children's issues. If that doesn't include AS, though, I'd look elsewhere.

In short, in my not very expert way, I'm suggesting you start kicking heinies. You're surrounded by the sorts of people who get into their ruts and hate being shoved out. Time to get a big ol crowbar.

And as for the school, here's a great site if you consider finding better options: www.greatschools.net

wow. thank you all so much for reading and taking the time to reply. I won't lie and say that I am not completely overwhelmed right now

Your son sounds a lot like my son.

This is how we got an evaluation: At the suggestion of his teachers, his pediatrician diagnosed him with ADD and put him on Ritalin. He had a severe OCD reaction to the meds, so we got a psych eval the psychiatrist diagnosed him with ADD, OCD and GAD, put him on Celexa and referred him to a therapist. His OCD seemed better, but then he got depressed (a reaction to the Celexa). His therapist asked for a med eval but the psychatrist wouldn't change his meds, so we got a second opinion. That psychatrist diagnosed him with Aspergers and added Depakote, a mood stabilizer. That seemed to help, a little, at first, but we were overwhelmed by the multiple diagnosis and got an evaluation from a neuropsychologist. That testing took 1 1/2 days and the diagnosis was Aspergers, with OCD, GAD, and NVLD. OMG. Anyway, since then, we've learned that the public schools will do an evaluation and so will TAP (The Autism Program).

At the age of 9 and 10, school is harder and social issues are more difficult. He's much more aware at this age that he's a little different, which is magnified into being hugely different by his own insecurity. The self-hating and wanting to die are hard to deal with. It's a fairly new issue (last year or so) and prepubescence is a catalyst. We're still working with him.

Mine gets sensory breaks at school (2 scheduled 10-minute breaks where he goes to listen to relaxation music in the resource room) and that seems to help. Therapy helps a little. Scheduled relaxation exercises help a little. We meet with a behavior analyst, he's starting social skills training and the school has a problem-solving team devoted to him. It's a dance. We move up two steps, back one.

wow.! Ok so what's my first step? His counselor wrote me and said he wanted to set up a meeting with me so I will do that. Does HE refer me to a psychiatrist or do I need to look for a developmental ped or what? I would never try and diagnose my son but I do have knowledge and see diferent characteristics of many things! Thank you all. I don't feel quite so alone

I wouldn't necessarily trust a referral from the school, unless you've heard from unrelated outside sources that the referral is a highly qualified, trusted source. When the school refers you, generally, it is someone the school trusts not to cause the school too many problems (i.e., saying the school needs to provide services that they find difficult/cumbersome). I'm probably being cynical here, but the fact that the school makes the referral already muddies the waters, in my mind, as to the loyalties of the provider. I prefer to go with someone completely separate from the school.

That said, you will probably want either a neuropsychologist or an educational psychologist. You will want someone who is certified as an educational psychologist even if it's a neuropsychologist, and someone whose qualifications meet or exceed those of the experts employed by the school district. Psychiatrists don't do the kind of testing that schools need in order to determine the educational needs of students.

The school district is actually obligated to do its own evaluation, but it can take a very long time. If you have testing done privately on your own, it can preempt some of their testing, since many of the tests cannot be given more than once within a certain time period. Their evaluation, therefore, would have to rely on the testing done by your evaluator.

All of this assumes that you are in the United States, so if you aren't, I'm sorry for the inaccuracies. You might want to check out Wrightslaw, which has lots of information about the law. The site can be a bit overwhelming, but it has so much important information for anyone who needs to access special education.

At the time the issue came up with my son, we were told to get a referral to a nueropsychologist from our son's pediatrician. I did get one, but never followed through, because our issue really was school related, and they were able to give us services from their own evaluation.

It does seem we were unusually lucky in that the elementary had a strong, knowledgeable and willing resource team. The school psychologist gave the tentative diagnosis of AS, the speech specialist diagnosed pragmatic speech issues, and thus we had the qualifying factors that allowed them to brainstorm what this unique child needed and to provide that. On top of that we had teachers that were willing to listen and be flexible, and my son thrived.

But jat is right, most schools are looking for the way out. I'm already seeing that at the middle school, although they are married to quite a bit because of the precedence started in the elementary school. Still, they won't do anything that isn't coded by law, even when it would be free and clearly best for the child. That has frustrated me to no end, especially since it is so different from what we had in elementary school. I just can't get my head around why something that COSTS NOTHING can't be done simply because it is clear it would benefit one unique child at the school. Sigh. But they are bound by rules and regulations and beaurocracy and checklists.

So .... See what the counselor says when you have your meeting. Get a feel for where the school feels it can go and what it is willing to do. Ask questions, and nudge. The most important question I ever asked was, "what do I need to get an IEP?" The rest moved from there, because I had decided we were going to get one.

Then get referrals from your pediatrician. Consensus here has been that there are a lot more benefits to having a medical diagnosis than not having one, and given that your son is already 9 you may not have time to allow things to play out at the school, and that is assuming you have one of the better ones. But, once you've met with the counselor you may have a better feel for that; our reason for not getting the medical is first that we don't need it to get services in this particular school district, and second that not having AS on his medical records will allow our son to disown the label as an adult if he so chooses; I kind of like leaving that to him, what labels follow him into adult life. But, I don't think most parents have that luxury; we've just been lucky.

I wish you the best of luck. It was a long road for us and I have to say, a very emotional one. Regardless of what you already know and see, facing a very clinical process and reading clinical evaluations of all the ways your amazing child falls short is very difficult to take. Be prepared for that. But, still, I think it's better than being told that nothing is there when you know it is. Sigh. No easy roads here, that's basically it.

Don't feel alone - I am a school psychologist. It is much different when it is your own child. The questions always seem easier to answer when you are not personally involved.

In your community, there is probably someone who specializes in the field. We got the initial dx from a developmental pediatrician. Whatever route you chose, make certain the person knows autism - specializes in it. Just because someone is a developmental pediatrician, clinical psych, neuropsych, etc. doesn't mean they are truly qualified. AS is one of those dx that could easily be misdiagnosed. I have seen it many times, especially by people who are more generalists.
Can you ask the school psych at your school or another counselor about who to go to? You can tell them you are just curious. I am sure they have names of people who specialize.

We went to a developmental ped for the dx when our son was two years old - dx with ASD at that time along with expressive language delay (speech pathologist dx the delay). We went to an Autism clinic at a Children's Hospital. He then saw a clinical psych who specializes in autism last year (labeled PDD-NOS). He was just recently evaluated by a neuropsychologist and we will have our meeting in a few days. The dx will probably be HFA due to speech delay but he presents more as AS because his language skills are increasing. I wouldn't doubt that he would get the AS dx from another professional (if that person didn't dive into the speech delay when he was younger and didn't know his cognitve profile). Nate was also dx with Anxiety disorder by the clinical psych (very common with individuals on the spectrum). I chose to go the neuropsych route because that specific clinical psych didn't do a lot of testing. We were more interested in Nate's cognitive profile and how to help him with his strengths and weaknesses in the school setting. He has anxiety but it's not too bad yet although his stutter is getting worse. We don't see a lot of other behavioral issues at the moment. My son can seem completely fine at times and most people think the label is completely wrong. It takes seeing him in social situations and getting to know him until you can see something is a bit different. Even then, a lot of people think that the label is incorrect even untrained professionals. I am thankful that I took him to only people who are specialists in the field of Autism. His regular physician was arguing with me that Nate had ADHD and needed to be medicated. Nate is not hyperactive, he just seems like it in doctor's offices (something about those offices LOL). The clinical and neuropsych both laughed at that one. That doctor thinks he is a specialist

Since your son is 9 years old, I would either chose a neuropsychologist or a clinical psychologist. The reason why is because you would get information from testing that could help in school. If your son was having more specific cognitive strengths and weaknesses (i.e., extremely good math, struggles at reading...poor verbal memory...), I would lean more toward a neuropsychologist. They are a lot more detailed with gaining If you are really concerned about the behavior and emotional issues, I would go the clincial psych route but make sure that person knows autism as it would be very easy for a person without extensive knowledge to label the difficulty solely anxiety, Bipolar disorder, ADHD, etc... and not consider Aspergers if it isn't completely obvious - make sense? There also could be a possibility of a dual dx which is why it is even more important to find someone who is specializes. Don't just call around because a lot of professionals think they are specialists. People in the community will know or at least they should.

Don't go the educational psych route for a specific dx. It does sound like the school needs to consider an evaluation or at least a behavior plan at least to address his behaviors and to help him. Have they even talked with you about doing a behavior plan or testing with him? They need to if he is melting down like that. With what he is experiencing, however, go deeper than what an educational psych can provide. I am a school psych,. I have been to many trainings, read a lot of books, tested a great deal of children and have a child on the spectrum. I also have a degree in communication disorders. Am I considered a specialist in the field of Autism given all of that? - No! yet I feel I have more knowledge than most (not all as I am sure there are some who are truly specifically qualified). The school psych, though, shouldl be able to give you some good information to take to the specialist. Even when the educational dx of autism is given, I encourage parents to seek out a specialist if the dx was not given by a specialist. I know you probably know some of this information given your field, especially related to behavior plan and school evaluations

As for the encopresis, we are going through that right now (son is five). It is frustrating. He has held it so much that he can't feel it coming out and then it's too late. He needs Miralax. From what you have described, he does have some of the symptoms possibly indicative of Aspergers. He sounds like a pretty bright boy who is probably just completely frustrated. I am so glad you are on this board and are searching for answers.

You've been giving a lot of great advice so I just wanted to offer you some hugs. There a lot of kids on the spectrum who are not formally diagnosed until much later. I think you're wise in seeking out an assessment and some answers. It's overwhelming no matter what line of work you're in. If you're interested, check out my blog in the early years. www.mylittlecanadiancorner.blogspot.com I have a 10 year old Aspie (who also has ADHD and Tourette's) and he sounds a lot like your little guy. Just take it one day at a time. You have to go with your gut.

I really can't thank you all enough for all of your wonderful advice. Since I posted I have contacted his teacher and she completely agrees that he needs a behavior support plan. Since Gavin already has an IEP for speech it will be easier to reconvene and talk. I have contacted the behavior specialist for her school who is going to start observing.

I also have an appt to speak with his counselor tomorrow to find out who he recommends for either the neuro or psych. It does seem that people are listening!! I will keep updating.

Thank you all so much for making me feel less alone!! !

oh and as far an the encopresis we have had that under control for 3 years. it DID take Miralax and a lot of work but things are good now.

Your son sounds a lot like mine...including his name . I think that in my son's case, he's not quite as severely frustrated - but frustrated nonetheless. He tends to hold it all in until he gets home, and then he ends up destroying things because he's so stressed and frustrated. We do not have an IEP for our son just yet - we're working on it and getting nowhere really fast.

Our son was dx'ed by a neuropsychologist who specializes in autism and neurodevelopmental issues... I feel confident that the diagnosis is correct, and now it's "just" dealing with the school district. (which is proving to be infinitely more difficult than getting the correct diagnosis!! !)

I wish you luck - and I know what you mean about feeling overwhelmed - it's almost impossible NOT to feel that way.