Aspergers dx given out too much

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Thanks everyone. I have truly looked at everything with a completely different light.

I spoke in great lengths with those parents and completely see it now. I see it now when I work with this particular child although most other people still don't believe. It helps that I have you to help put things in perspective!

Dilemma - I would definitely see someone else who does understand if those two people don't. There are wonderful people who specialize in it. A lot of people don't believe that my child is on the spectrum either at least at first. It takes them a while to see it.

Something is bugging me about this thread, and it is not the notion of diagnosis being handed out too freely. Who knows, maybe it is being over done.I do not see it myself, but I think doctors and teachers went overboard with ADD and stimulants years ago, so who knows if Aspergers is next. What has bothered me are your statements which make parents sound like users of their children. I have never sought medicaid or disability payments for my child and I am willing to bet the vast majority of parents do not view thier children as an opportunity to abuse the system. My child also wishes not to have an IEP because they do not want to be treated as different. They have no trouble with intellect, so I allow these choices at school. Your statements seem to flip flop. You say your child is so typical people would not even know it, but the ones who take the time do see it. So, are you saying your child is one of the too many diagnosed? Do you wonder if others might be having these same judgemental thoughts about you?

I have already mentioned that my perspective has changed. Did you my other posts? I may have not been clear enough through my writing.

I work with parents and do see some as users of the system. Did I say every parent? No. Yes, I work with some kids that I do question their dx. I live in an area where kids are way overdx with Aspergers by a particular person. Some people feel my child seems typical until they get to know him, yes. Is that necessarily flip flopping? Especially when I mentioned that AFTER some really helpful others helped me with perspective.

I feel like I have done quite a good job and thanking people for their thoughts and helping me see different perspectives. That is the reason why I posted. I feel you should be more bothered by people who continue in their narrow-minded ways and don't consider what other people say. That is why I come on here asking questions. I want to hear from everyone and recheck my perspectives. That is what I have done with this thread.

Concerning my child - other people who may say that they don't initially see it with my child don't really have the specialization or experience in the field.
Those specific individuals may feel that autism is primarily like "rain man". People who are in the field clearly can tell my child is on the spectrum. I don't care that people are judging the dx. I do sometimes judge diagnosis because I do diagnosis, but never claim to be a specialist in the field.

This thread has helped me in the following ways:
To always remember that no two people on the spectrum present the same way.
The diagnosis doesn't matter when it helps parents get the help they need
It doesn't matter if parents seek out a diagnosis to get medicaid help. I am there to do what I can, regardless.
To not quickly judge a diagnosis based on my "few" experiences working with the individuals

I have already stated that when I and other school team members disagree with the diagnosis, we still use that diagnosis to get the child services that he or she needs in the school setting. A lot of professionals don't do that.

I don't know what else to say to anyone else who posts. As I have already stated a change of perspective.

Last edited by natesmom on 06 May 2009, 12:32 am, edited 4 times in total.

Claire, this is what I stated in a previous response. You brought up something that I already showed recognition of.

I hope that you and others do not continue to be bothered by these posts.

Wow. First let me start by stating that I recognize you have changes your outlook on the subject. My 6 year old was diagnosed with Asperger's last year and since I didn't know anything about it or what to do about it I agreed to put him on medication. He was stimming, aggressive, rocked back and forth, and repeated commercials all day long. I had no idea what was going on. Fast forward almost 1 year and he is now off meds, I give him methyl b-12 shots, low dose naltrexone cream and a handful of supplements. He is now pretty 'typical' to people who don't know him. If you mention Danny Phantom or tornadoes you might start to get a clue but his main issues are sensory and social.

What bothered me about your original post was that if you were to see my son you probably would think he isn't 'worthy' of an asd dx. I am a single mom and I am receiving help from medicaid and social security for him. His sensory therapy is $99 per week, b12 shots are $80 for 2 months, $70 for ldn cream, and his supplements are not cheap. I have him in a social skills group-$150 for a month. My point is that most parents don't misuse disability $$$.

I am so glad that it is now hard to tell that my son is on the spectrum. It really sucks though that there may be people out there that think I am lying about it. He is doing better that ever but he will always have asperger's no matter how many supplements I give him.

Natesmom, i think it's awesome you have changes your perspective, it's not always easy to do that and especially to admit the change!

About my daughter, i'm getting a proper evaluation at one of the hospitals here for her as soon as i can get in (might be a while) the Dr's i saw were general Dr and general Psychologist and had little experience with AS and less with kids as young as my daughter at the time. I don't have the resources to get an evaluation of myself (i'm not sure i would even if i did have the resources though, it's just a way of helping me understand myself and the experience i had growing up) but i'm sure i'll learn a lot by helping my daughter go through the process.

ETA: Another thing to think about is (example) that my daughter has issues that are very minor compared with a lot of kids, not obvious to a lot of people (although some of her oddities will be obvious when time is spent with her, you'll know she's different) but the fact is, there are issues i NEED help with, and she may come away with a diagnosis of AS and if someone meets her and i mention she is "autistic" or "has aspergers" they might look at me the way you were earlier when they don't see it. My point is, that i need the help with her issues and that is why i'm going for the eval, not because i want to label her if you know what i mean. HTH

I realized that you had changed your stance on the issue of diagnosis, but it seemed I was the only one who noticed the statements of parents looking for a paycheck. Sorry I got all ruffled. I really should not post when like that anyway. Every woman I have ever known to be on public assistance truly needed it. I know there is still some abuse out there, but I understand it is not as common or easily done since the Clinton administration. However, the stigma is still there. I feel bad for women who have to have people snarking behind their backs, just because they need help. Anyway...sorry for getting all snotty.

This is the most polite disagreement/misunderstanding i have ever seen on the internet

I'm confused. This is an odd thread. Nate's mom, you are waffling back and forth.

I'm sure some kids might get misdiagnosed and there is an element of error. But more times than not, Asperger Syndrome is not handed out easily. Also, it's difficult to tell, as you argued, so best leave it to the experts.

What parent would want special ed, disablity etc. for their child? That part of the thread is confusing to me. It's a very difficult situation all the way around and draws the worst kind of attention. Parents are humiliated and defensive (because they have to be). It is isolating even for the parents as no one truly understands. It is a silent struggle as the child seems intelligent and capable enough. It is high stress and all encompassing. It is unpredictable, so a week of wonderful behavior, you know, will be short lived.

A child with Aspergers does not bring in any money! You are not entitled to ss benefits/ services unless you are existing at a povery level or unemployed. Even then, I imagine it's an uphill battle.

There are people raping the system who are saavy and street smart and figure out how get the most benefits with minimal output. I wouldn't put parents of kids with autism in this category.

Actually in some states you can get assistance with a disability that is not contingent upon finances. I don't think they offer this in most states.

I work in special ed and trust me, people are out there. It wasn't fair for me to even mention it because those people are rare. Can I just delete that portion because obviously I was being impulsive in my wording and not being fair? I have encountered a few people who were like that in the past year and it wasn't fun at all. I guess you would have to do my job in order to understand my perspective and why I feel the way I do at times (less now since this thread). I have seemingly generalized in my other statements and made some of you upset. I apologize.

As one person stated, if a diagnosis can get a child services then that's wonderful.

I want to state that most of the time I am the one fighting to get people the help they need. Seriously fighting. I am the one who calls Health and Welfare to get everything these parents need to get their child help. I spend at least three hours a week doing this because I strongly believe in it. I have had parents who are not at my school call me up because a friend referred them to me because I can help them - at least try to help them. I actually let all of the parents I work with know about this program. I also lead parents in the direction of specialists in the area as well as agencies (even agencies that work against the school districts) as I believe everyone can benefit from advocacy that is not apart of the school setting. I just recently referred a person to an agency that is trying to sue the district but that person is a wonderful advocate for kids on the spectrum. I know the assessment instruments to be used that would make the agency that approves the disability medicaid to allow that specific child to get approved. I call up the parents and let them know if they want me to also give a particular assessment to assist them, I can. This is not initial evaluations or even reevals

Seriously guys - I really shouldn't have said it as I was frustrated at a current professional situation at the moment!

How in the heck am I waffling back and forth?? Please enlighten me because I truly can't see how I am. Perhaps I seem like I waffle back and forth because I can see different perspectives and am doing a horrible job at expressing my views in writing (frequently distracted my my wonderful kids). Perhaps I am waffling and don't even notice - could happen LOL!

I won't completely change my opinion that a certain person here dx aspergers way too much. A dear neuropsych friend who also specializes in Autism in this area in addition to two other clinical psychs have often disagreed with this persons diagnosis.

I will just do a better job at holding any judgments when that particular person diagnosis. That is what it all boils down to. When you have a particular person judged throughout the autism and general population community as "the one to go to if you need the autism or aspergers diagnosis" and that person is judged by other professionals in that field as diagnosing incorrectly, it is easy to feel that way. Especially when you live in a slightly smaller community compared to places like Chicago and New York.

I can completely see why most of you are upset, though. I guess throughout the country Aspergers is highly under-diagnoses. I just live in this community where it sometimes seem that it is overdiagnosed. It could be that all of the other specialist are wrong about this particular person over diagnosing and he is the only one who is right. I can see why this would strike a chord in some of you who have been through a never ending battle. There are some people on here who conitnue to fight for the diagnosis because they know it's correct yet the "so called" specialists don't agree. There are at least two people on the parents forum that really seem to get the run around concerning the diagnosis. That is quite upsetting.


Thank you all! I do appreciate what everyone has to say. Thanks Claire!! Sorry again.

Last edited by natesmom on 06 May 2009, 9:42 pm, edited 3 times in total.

Change of topic: That is wonderful! I feel that fish oil helps my son.
.Do you have a system? How do you know how much to give your son?

There are many parents that want special education for their children, many. I don't know why that part of this thread is confusing.They want help for their children and often feel this is the only way to get it. I don't see a problem with parents advocating in that way, I really don't. We get a lot of requests for evaluations even on kids who are doing average in school and have no behavior issues (not merely talking about kids on the spectrum). Most parents want to rule out all factors and get help for their children. Just because they are performing average doesn't mean they don't necessarily have a processing deficit so the eval will help us to assist with educational planning. I am fine with that. A lot of those parents do want their children in special ed and become upset when they don't get it. Again, it's usually because parents then feel like their child won't get any help. That is a horrible place to be in, absolutely horrible. So yes, to answer your question - many parents do want it and it's not a bad thing to want that. Perhaps the term "want" is not what we should be saying but saying "feel they need".

Then there are those few times a year we get a nice big SSI application to be completed in it's entirety even before the psychoevaluation is even completed. I am always willing to help but when you find out later that a few of those individuals requesting an eval spoke with another family member or friend about going to the district to get an evaluation so the child can qualify so you can get disability (either the free one non-financial based or SSI). When their child does not qualify for special education services, they get extremely upset although there really was no indication of education or social/emotional difficulty - they get really mad, start yelling mad. Then they go to a "certain person" to get another diagnosis. Diagnosis given. Medicaid disability and possibly SSI provides extra help. The disability sometimes dictates the likihood of getting the help in this area. I will just keep doing what I am doing to help people and just try not to let certain other situations bother me. It's hard when those situations take away from the time I spend with my children.

In this economy perhaps that is what people feel like they need to do. I am all for helping, really. It's just frustrating. If you lived in this area (area name not mentioned), trust me - you would understand.

There are also parents. like you said, who do feel humiliated, defensive because they often feel like people are initially judging them or they may feel that they are the cause of their child needing extra help. Coming to meetings where there are 8 people surrounding a table is never fun.

What do you mean no one truly understands? Do you mean that the parent often feels like no one understands? I do agree that parents feel like no one understands but plenty of people do understand.

I never would have sought out special ed if I wasn't forced to do it. I don't think it's the best situation for kids because it is stigmatizing and I don't know how to convince a smart kid that "Yes, you're smart but you think differently so you get special assistance" and have it sounds positive.

I don't like to think of my son as deficient or disabled. He is who he is. It is because he must attend school with large groups of kids that he has difficulties.

No, I don't believe people understand. I've yet to meet anyone that I would discuss my son's issues with aside from team and on a couple of sites (this one).

I wouldn't know where to start. It's too big. So, I just don't say a word. It's an isolating world. Special ed contributes to the isolation and stigmatizing effect. I had two kids in regular ed (grown now) and believe me there is a difference. The older ones had friends and attended school just fine. No issues until high school (even then it was normal apathy). They had buddies, sleep overs, lots of interaction and normalcy. I would prefer that world to this one.

I guess you have a much better understanding of people who are seeking money, diagnosis for all the wrong reasons. I don't meet too many myself. I'm not qualified to speak on it. I can see how it would seem wrong, especially if there is some doctor who hands out the diagnosis (why parents would want it for their kids....I still don't understand this!). I went through so much with my son in school since Kindergarten. I hated the labeling, diagnosis, reports, doctors...all of it has been way too much. Again, he needs to attend school, so it was all necessary.

: )

Natesmom, i need someone like you! I'm so terrified-of and horrible-at the phone calls and such (my own aspergers interfering there) sometimes i feel like *I* need an advocate as well but thankfully through lifes crash course i've learned to push through that as much as i can when i need to. People don't know how lucky they are to have someone like you who will be an advocate along side them! We need more people like that!

Also wanted to add that when i said:

I meant help as in therapy and ideas for how to cope with her issues, i didn't mean SSI or money, i know nothing about all of that stuff.

Dilemma, I don't know. Making phone calls when it's for a cause is a little fun for me. I can't explain it. I get this "high" from making phone calls for others. I honestly hate to do it for myself. It's like I have some kind of block but the block is lifted if it's for others. It's actually a little strange.

Equinn - I just said those exact words to a student two days ago.
You were actually forced to accept special ed. That makes me wonder if we unintentionally force parents to make that choice or if they even feel like they have a choice.
If a child qualifies for services, we basically tell the parents that their child qualifies and this is what they qualify for. We don't really discuss the possible ramifications involved for placement in special education. We tell parents at the meeting the results, go over the draft IEP, ask them how they feel about it and then sign papers. They don't have a lot of time to process. The team often doesn't want to have two separate meetings to allow the parents time to process the results and assist in deciding the next step. That probably isn't extremely fair on the parents. That has happened everywhere I work. I used to call parents and ask them how they feel about everything before the meeting. I would essentially let them know what to expect. I haven't done that a lot for about three years now. No wonder why I haven't felt as successful. I haven't had the connection like I used to have. I will now ask the parents if they want to separate meetings during my phone call (which I will start doing again).

I seriously need to change the way we do things. If I went into a meeting as a parent like the way we typically hold meetings, I guess I would feel that my child was forced into special ed, too. You are right, when a child is pulled out of the general ed curriculum at anytime, they will lose some ground. Some children can catch up but many do not. At one of the schools I work at, most kids are push in with the other students. That district does a wonderful job at providing aides and more one on one help for students who need it in the classroom. We don't explain that clearly to parents. Parents should have all the information to make clearly informed decisions but I think that part is really lacking - at every school.

In the past two weeks, I have heard parents say to the team "Whatever you feel is best as you are the experts." That kills me. When I hear parents say that, I try to make every effort to talk to them later and explain they are the experts with their own child. They are the advocates and anytime - anytime they disagree with the team, they need to speak up. I just gave two parents numbers of agencies last week who can come to meetings on their behalf. The school district would seriously want to fire me if they found out which numbers I was handing out. One of the agencies owner has a child with aspergers. She apparently is the scariest person to have at meetings because she advocates so strongly for the kids. I know her. She is really good. We joke around that there could be a time we sit on opposite ends at the table. It could be one of the parents I sent to her LOL.

I get along best with parents who are extreme advocates for their child(ren). I think the reason why is because I have a very similar personality. I quietly chuckle during meetings when the team discusses how "such and such" parents were extremely hard to deal with because they request something or sent an email with five different questions. I already do that at my son's current school. I am the parent that team talks about. I am considered the difficult parent. This is the reason why my son will be at the school I work at next year.

I still can't believe how much this thread has helped me really reevaluate so much. I feel so much better now

(I hope I did the quote part right?!?!)

My son sees a DAN! doctor and I give my son about a tsp of Pro EFA fish oil daily. He also uses Super-Nu Thera multi from Kirkman Labs which is awesome. It has folinic acid and extra b vitamins which our kids need. Then I give him zinc, vitamin c, d, probiotic, enzymes, and calcium powder. My favorite thing I read about and am doing is using epsom salts in the bath every night. It gives him a magnesium boost and really calms him down. Last year at this time I was giving him clonidine which knocked him out because he couldn't fall asleep without repeating a vidoe over and over while rocking back and forth. It was scary. He is on the gf/cf diet and his doctor said he isn't rocking anymore more than likely because of the diet. Trust me - I am not against meds - but I was curious to see if there was another route for him since he is only 6. Luckily, the alternative methods are working. He was also on Risperdal and Zoloft. Thankfully, for now, he is med free.

I love the b-12 shot (hate giving them though!!) He is so much happier. He is attempting to go up to kids in his class and the other day he said "Dude"! ! Too funny. He even asked a boy what his favorite cartoon was. He never asked a question that required a conversation to take place!

Back to the original topic--I woke up this morning thinking about this and that bothers me!! It reminded me of when Dennis Leary had the same type of comments in his new book. It is hard enough that I have to deal with this on my own and worries me that my son will have this label all his life. It saddens me when I see that he wants to make friends but it just doesn't come natural as it does to other kids. Where in the world are these parents that people like you Dennis Leary speak of? Who in the H*** would want to say their child is disabled in any way for monetary benefits and make their child think there is something wrong with them? I am angry because I shouldn't have to wonder if people are thinking this way about me and my son because he probably will look you in the eye and his voice tone is typical. Maybe we did meet you and you are talking about us. I was taught not to judge people...I plan on teaching my son to do the same. That is all I can do. If someone doesn't beleive me of my son's diagnosis oh friggin well.