Newly diagnosed son with Aspergers, parents needs advice

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Hi, I wonder if anyone can help me or has had a similar experience as my son. He is a 10 year old, lovely boy, who is happy at home. Most of his problems start when he is at school or around other kids, he finds it hard to socialize and usually does silly things to make up for not knowing what to do. For instance, one time he got on all fours and started eating grass and mooing. It's something we still giggle about but he tells me he doesn't know why he did it. He does not have any friends and usually walks around the field at recess. He has delayed speech and is still very difficult to understand and it takes him a while to say what he has to say as he has problems organizing thought. He also has low muscle tone and coordination problems. Don'tknow if itis related but he hasmany many nose bleeds. He has been diagnosed in the past with ADD and DAMP but I took him to see a neurologist at Miami Childrens Hospital because he is struggeling in school, heliterally shuts down in class and his work is often incomplete. She diagnosed him with Aspergers due to impared social skills, speech, though and he quite often talks about subjects not relative to conversation but not all the time. The one thing I am confused about is that he is not obessive about anything really. Of course he loves nature and video games and pokemon...and that's it but what boy doesn't. I don't know if I am in denial? I know there is something going on with him and although it doesn't matter to me because he is just wonderful the way he is I want to make sure he gets the help he needs. He is so creative I think he is capable of anything. The school on the other hand does not, they will not accept the evaluation of Aspergers until they do their own tests, which "could take a while" and in the mean time they are expecting him to perform. He has an IEP but it is not helping him fully. Am I in denial? Can anyone else relate to this?

I don't believe the school can refuse to give your son needed services until they do their "own testing". Demand an IEP meeting and tell them if they do not change his IEP to help him succeed, mention that you will next be talking to an attorney. A neurologist's diagnosis would trump a school psychologist/counselor any day of the week. No child should have to suffer while the school does their own diagnosis. They are trying to save money, so call their bluff.
My son was previously diagnosed as severe autism and just recently with Asperger's. I'm also a mild Aspie and have a daughter with Asperger's. Socially, I was very awkward as a child but grew out of it. I don't think your son's label (right or wrong) matters as much as getting him the services he needs to do well in school. Later on the diagnosis can be changed if it no longer fits, but it may be the tool you need to get the school to do something. Good luck!

Hello Bizmum,

Recognizing the area of intense focus (I hesitate to use the word "obsession." Our AS son has OCD, and there are marked differences between his Asperger-driven, high-focused interests and his obsessions. The latter are never productive.) can be difficult. When our son was younger, under 10, he had an intense interest in patterns. So while he was busy going through his daily life always looking for patterns, we didn't recognize the level of interest. He kept it to himself and moreover, it was spread amongst everything: barcodes, paragraphs, traffic, beach waves, light through venetian blinds, etc. We were inexperienced parents of an AS child and we didn't notice. Maybe it is right in front of you.

Interestingly, our son has lots of nose bleeds. Lots. That is interesting.

Our son is now 19 and we are done with public school. Nevertheless, I learned too late that, at least in my experience, in most cases, after the niceties, it is necessary to return to the school and become a bigger headache than they are willing to deal with. Otherwise, your child will be at the mercy of whatever the whims of the day are. I don't like writing this, but I am afraid it is true.

I must admit that an Asperger child that has difficulty organizing thought is a little unusual to me. An AS child being "off subject" I can understand, but being unable to organize thought is not typical for a cross-section of people with a superior IQ. Consequently, I would be cautious of the Asperger diagnosis, and I would recommend you seek a second opinion from someone well-experienced with Aspergers. Neurologists primarily treat physiological ailments are not typically associated with treating autistic spectrum disorders. In my opinion, a clinical psychologist would be better suited.

And by the way, you are clearly not in denial. Anyone who is actively seeking answers cannot be considered to be in denial. It is a difficult and arduous process. We've all been there.

Good luck.

Hi Bizmum,

My son is 11, and was diagnosed with Aspergers, ADHD, GAD, and strong OCD tendencies when he was 7. He also has the weak muscle tone..My son also used to get a lot of nose bleeds, but I'm not sure if that's related to anything. When I was a kid, I used to get them too, but it was from the air being so dry.

As far as the social issue. My son has improved greatly. He used to pretty much just keep to himself. He did the social skills group at school and ended up quitting. But now, he has friends that he hangs out with after school. He definitely still has some awkward moments, but all kids do. Compared to how he was doing in Kindergarten and 1st grade, I personally see a huge difference.

In regards to the school, I also don't think they can make you wait to see if they diagnose him as an Aspie as well. I had my son diagnosed outside of the school in order to get his IEP. The only thing we sort of butted heads on was the therapy he needed. I had many medical professionals telling me my son should have O.T. and speech therapy. The school said they would have to do their own tests to see. long story short, they ended up saying he did not need it, so I took my son on my own. This was probably better anyways, because I trust the people at a children's hospital, more than the school therapists.

Since you are new to all of this, I encourage you to read up as much as you can, ask questions, and if you really feel the school is jerking your chain, contact a special ed advocate.

Good luck,

Kat

welcome to wp, bizmum =)

the special interests as they are called are not a requirement for diagnosis since not everyone has them. so it could be that your son doesnt have them, or as climber suggested, you just havent seen them.

the school wont simply accept a medical diagnosis and give services based on that. they will do their own evals, and base his eligibility for services on their own conclusions. this is their obligation from federal law, to determine if your child has a disability and to determine if your child needs services for that disability. their evals must be done within a certain time period of your written consent to evaluate, within 60 days of consent by federal law, sometimes sooner if state law has different requirements. i would encourage you to go to the school board office, or where ever their special education office is, and submit a written request for evaluation specifically for autism spectrum disorder, if you havent done so already. they quite often will have a form for you to fill out for the request. once they have that written request, the clock starts ticking and those federal laws bind them on how long they have to do the eval.

if they refuse to do the evals after youve requested it, refuse to give services after his evals, or find that he does not have a disability, then you would move on to other options provided for in the federal laws if you disagree with their conclusions. but you need to request that eval first, and thats best done in writing.

you can also request that they send you a copy of the reports resulting from the evaluations prior to the IEP meeting they will schedule. that way you have a chance to read over the reports before the meeting, so there hopefully wont be any suprises. i didnt know this at our asd sons first eval, and really wish i had. for me, it was a shock they refused to diagnose asd and i just accepted it at the meeting. if i had known beforehand, i could have researched what my options were and how i could disagree with their evaluation and proceed to the next step, instead of just being lost and surprised and signing off on their eval. now i always request the reports beforehand, so i go into the IEP meeting with as much knowledge as they have and am not surprised at what the reports say.

his current IEP, if he doesnt already have eligibility for autism spectrum disorder, wont necessarily be enough to get him autism specific services. it sounds like he most likely has an IEP for speech/language impairment. talk to his speech therapist about what they are doing for pragmatics, which is basically conversational speech. pragmatics are quite often an issue for autistics, but since its part of speech/language, his speech therapist should be able to add that into his current IEP based on his current s/l eligibility (if thats what his IEP is for). you could inquire about social stories to help him understand social situations, and social skills classes to help him learn those skills needed to interact with other children.

a good resource for you is www.wrightslaw.com . it has tons of info available for special education and IEPs. use it to learn what your rights are in regards to IEPs and evaluations.

Because of his speech delay he may fit better under the high functioning Autism diagnosis. When they are diagnosing Asperger's they focus a lot on the "obsessive interest'. My son was diagnosed at age 6 with Asperger's. He has the typical "little professor" syndrome...uses words that more advanced for children his age. He also will talk endlessly about what he is interested in at the moment and seems is not all that interested in what other people have to say or what they want to talk about. For instance his therapist was playing a board game with him and pointed out that he (the therapist) had a scratch on his hand. My son looked at it and said "Yeah" then went back to the game. His therapist said "I was in a car accident". My son again just said "yeah". Typically, even a child, would have asked "how did you get hurt" and after the car accident was mentioned would have shown some type of concern.
My son also has not one interest but many. He does tend to focus on them one at a time. His interests are Star Wars, Pokemon, Dolphins and World War I and II (mainly the airplanes).
I think there are still a lot of kids in the public school system who have Asperger's and even Autism who are not diagnosed because the general public is misinformed about the fact that the symptoms are not always textbook. On the other hand there are a lot of kids being diagnosed so those in the schools may be less inclined to suggest anything due to the lack of funding. I would also take my son to a Psychologist who specializes in Autism. There are free services that can assess him as well, no matter how old he is (if you are in the US). Both of my younger kids were diagnosed through the California Regional Center. It sounds as though your son needs services (therapy) so I hope that you can find out what is going on with him and get him the assistance that he needs to be more successful.
Also, about the denial. I know that, at first, Autism sounds really frightening but once you educate yourself you will find that while it can cause difficulties there are also many gifts that the Autistic mind holds. Try not to focus on the negative and look at the positive. Therapy has helped my kids a lot...take the incident I described above with my son....the therapist took this as a good time to teach my son a better way to respond to someone when they tell you something like he told him. Its not that my son does not really care, its that he did not know how to respond. People say that kids and adults with Autism dont really care about how other people feel but that is not true. Having Asperger's myself I know that its just that there are times when we are so excited by what we have going on that its hard to focus on what someone else is saying and there are times when we simply do not know what to say or even to explain how we feel.....dont know if I helped any but I hope that your son gets the assistance that he needs soon.

Hello, and welcome to Wrong Planet.

We seem to be getting a lot of new people this week, but I guess its that time of year, apparently...?

Anyways, lets start by answering your main question, which is roughly 'Does my child have AS (asperger's syndrome), and am I in denial, or is there something else going on?' I am paraphrasing of course, but your post wasn't very clear about what your question was exactly. So, I am hoping that is close enough.

For starters, the definitive answer to that question is 'the label doesn't matter'. And I really do mean that. The truth is that there is 6.3 billion people in the world, and each of them is a completely, entirely, and totally unique person. Trying to say, 'does my child fit precisely into the standardized box of asperger's syndrome', is silly. Your child is a completely unique individual, of course you will see some discrepancy when you compare him to an arbitrary standard. Nobody anywhere in the world will fit every single last stereotype that supposedly describes somebody with asperger's syndrome.

Take me for example, I fit the stereotype of being uncoordinated, mostly non social, interested in all sorts of unusual information, having some difficulty talking, and I am pretty much faceblind. But that being said, I don't have significant problems with planning, or organizing (often referred to as executive function). Does that mean that I dont have AS? I don't know, and it really doesn't matter. The label itself is vague and poorly defined, and the diagnostic criteria is subjective at best. So some people would say yes, others would say no.

Likewise, your child seems to have fairly typical interests, and perhaps he makes great eye contact, or has any number of other things which make him seem like he doesn't have Asperger's Syndrome. I have heard lots of parents say things like 'O no, my child cant have AS, look he is making eye contact. And really it is silly. As I said, you can always find something that fits the stereotype, and something that doesn't. So if you sit there and agonize over the perfect label for your child, then you will never find one. Your child is too unique and individual to ever be pegged down by a single label, checked off on some IEP form.

What really matters isn't what label you apply, but that you learn to deal with the child individually. If the child needs help in a certain area, then you give him help in that area. If your child gets the best results by handling him in a certain way, then you handle him that way. If teaching your child something helps him, then you teach it to him. Whatever label you give him doesn't supersede who he is, what is important is that he is treated like an individual, and not a label.

Now that being said, that doesn't mean that labels are useless. There are two main benefits. Benefit number one is that it gives you a direction to look into. For example, your child may have some problems with understanding social interaction. Other people who are labeled with AS also have some problems understanding social interaction. As such, the help recommended for people with AS in determining how to deal with social situations may also help your child. Does that mean your child has AS? I don't know, and it doesn't matter. But in this case, reading more about AS allows you to help your child as an individual, and thats really what is important, isn't it? If reading about AS and learning how to deal with people who have AS helps your son, then thats what you want, right? Who cares what labels are involved so long as understanding more about the labels help you and your child understand what is going on.

Secondly, as I just mentioned, labels don't do a completely accurate job of describing anybody, nor do they allow you to completely understand that person. But the labels can be useful when dealing with a bureaucracy. In your case, you have an IEP that is fairly unhelpful. Getting the label of asperger's syndrome isn't going to change who your child is, but it might help you get a better IEP from the school. Lets put it this way, your child will never fit precisely into the AS stereotype, but he might have some common difficulties that are shared by people like him. And if getting him labeled with AS allows him to deal with those problems better, then thats where the advantage is. I am not suggesting that you scam the school into getting a fake label, but I am saying that you should try to get the closest label possible that winds up helping your child the most. If we lived in a world where the educational system treated students like individuals and helped them individually then this wouldn't be necessary. But unfortunately, the educational system is highly bureaucratic, which means that getting a label, even if it doesn't fit exactly, is better then nothing when it comes to helping your child.

Beyond that, there are a few things I would like to cover.

1. From the limited research that I have done, DAMP seems to be nothing more then ADD combined with hypotonia (the technical name for low muscle tone.) Which doesn't really seem to be a concern any more then ADD does. I personally have a semi-severe case of hypotonia, and all the problems that go with it (poor coordination, bad handwriting, clumsiness, and limited stamina). But to be honest, it has never caused me any significant problems. As long as your child is able to walk from the car to the door, then that is all the physical coordination and stamina that he will need to get an education, a job, and have a successful, and enjoyable life. There are far worse things then being scrawny and poorly coordinated. So, I don't mean to discredit the DAMP diagnosis, but I really don't see why that label should give you any more concern then ADD. It just seems like an unnecessary extra label that serves no purpose.

2. To address the phrase "He has delayed speech and is still very difficult to understand and it takes him a while to say what he has to say as he has problems organizing thought." I believe you are referring to difficulty with translating his thoughts into words. Which is entirely understandable, as I still have difficulty with it at times. But I wouldn't call this unorganized thought, as he knows what he is trying to say. The problem is just finding the appropriate phrase or terminology to explain something, which can be a complicated and difficult procedure, especially with the limited experience of a 10 year old child. Really it is just arguing semantics, but the phrase 'disorganized thoughts' tends to indicate problems with understanding and making connections. Which is different than having difficulty with properly translating your thoughts into words. It doesn't really matter how you describe it, but it helps to keep things clearly defined for the sake of better understanding.

3. There is often a lot of talk about people with AS having certain 'unhealthy obsessions', and that really annoys me. The word obsession has such a negative connotation to it. I personally think of it as a passion and appreciation for information. Just because a person is interested in something unusual doesn't mean that it is wrong. After all, if I were to declare certain interests as obsessions, and label them as bad things then I would start with dating. Do you know how much time an average teenager wastes with dating? How much money, effort, and thought goes into relationships that last a few months at the most. And then they go off and do the whole thing again with a new person. This unhealthy, and self-destructive addiction to other people can cause a serious impairment in judgment, and present significant problems. But despite that, you never hear anybody talking negatively about dating. In fact, it is just the opposite, everybody is all 'gung ho', and happy about dating like its the best thing in the world. So why is it that an interest in other people is treated like a great thing, while an interest in information is treated like a symptom of a terrible disease. Its just not right.

I am starting to ramble a bit, but the point I am trying to make here is that you don't need to worry about these 'obsessions'. Whether your child is interested in Pokemon, or sports, or rockets doesn't really matter. It isn't a bad thing for your child to have a hobby of learning more about everything, nor is it anything to try and stop. It is a natural, and enjoyable thing which can bring a great sense of enjoyment and accomplishment into your child's life, not some symptoms that you need to be wary of. So if you don't see any obvious signs of 'obsessions' then don't worry about it. Perhaps your child doesn't have any. As I said before, he isn't going to fit every single last stereotype. But if you do see signs of 'obsessions' then still don't worry about it, because it isn't a bad thing.

Tracker makes a really good point about labels, which is that their worth - or lack of worth - is determined by what they accomplish - or fail to accomplish. From what you've written about your son, the AS label should give you access to more services that I would suspect your son could benefit from. Your son sounds like mine in many areas. One being that my son has always enjoyed circling the field. Another being attention issues, which are due to over-stimulation around him. And those hypotonia issues ...what drove us into an IEP and AS diagnosis.

I have a friend with autism, who is 16 years old and he used to have about the same issues as your son, but he is right now very social and walks independently to my house, when he comes over. I bet that soon, your son will be like him, being more social and independent.

Not sure if someone else addressed this (I skimmed much of this thread) but an outside diagnosis WILL help you with the school.

Yes, they are not required to accept an outside diagnosis, yes they will have to do their own assessment - BUT, in the US they are required to REVIEW the outside diagnosis. They also might be required to pay for it:

http://www.wrightslaw.com/info/test.iee.steedman.htm

http://www.wrightslaw.com/info/test.index.htm

http://www.wrightslaw.com/blog/?p=30

School evaluation teams are generalists, not specialists - they tend to miss less obvious cases. You also have no control over who's on the evaluation team, where you can choose a qualified professional from the services available to you through your insurance. This is not to say that school teams are idiots, or unqualified, just that their job is ridiculously large in scope and it's impossible for them to offer ideal services to individual children.

We found we were floundering until we got an evaluation from a specialist who was able to provide a roadmap for services that the school team was more than willing to follow. In our experience, coming in to the IEP meeting with a plan that said "our son needs this, this, and this" and the paper to back it up was a whole lot more effective than coming in and saying "we know something is wrong. Please help us." This was even the case when we brought an advocate, but didn't have a plan with a professional's imprimatur on it. Sometimes, the school just doesn't know what to do and you have to find out yourself and tell them.

If you don't have health insurance that covers an independent assessment, contact your local state's Department of Human Services office (at least, that's what it's called in the US, there are probably congruent offices in other countries.) Most states have some kind of medical insurance expressly for kids who aren't covered or have too little coverage. It usually covers this stuff.

PLEASE NOTE THAT THIS THREAD IS NEARLY A YEAR OLD.

There really isn't any point in advising the OP on the original question; much will have changed since she asked it.

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