Will a diagnosis help? (with details)

amother

Tue, Feb 24 2015, 11:05 pm

I have a young DC who is having some trouble in school (at home less so) DC is already getting SEIT, OT, and hopefully soon play therapy. I am also looking into alternative health type things.

A behavior analyst they brought in to help with the school problems strongly advised taking DC to a neurologist. It's definitely something I've considered. I am pretty sure (though of course I can't be positive, that's the point of testing...) the diagnosis my child would get is high functioning autism. It seems to me that the behavior specialist mostly was spooked when I told her the child "stims" to self-regulate. I'm not sure if she would have recommended it anyway but that definitely made her start saying "strongly, strongly recommending it, sooner rather than later."

I am not in denial or anything. But my question is just that if the diagnosis is anyway something there is no real cure for, and if we're doing everything we can anyway in therapies, is there really a benefit to getting a diagnosis? I'm concerned that having an autism diagnosis will negatively affect the way teachers and schools look at DC. At this point there is no question of a special school so I don't need the diagnosis for that. DC is very normal in most ways and VERY smart. The behavior specialist will work with the SEIT on howto teach DC social skills and cooperating/following directions, and between the OT and the play therapist hopefully DC will learn more self-calming and social skills. So what more will a diagnosis do that she was so strongly advising me to go to a neurologist?

In your experience, has an autism diagnosis for a very high functioning kid helped? In what ways? Harmed in what ways?

My big fear is that the problem will get bigger as DC grows, which it already has. But I should really save this for another discussion because right now my only question is whether there is really a point to going to a neurologist for this (also, is there any OTHER diagnosis that looks a lot like Asperger's but could be something else that the neurologist could diagnose and treat? Or are we basically just going to get a professional signature on what I already kind of know?)

amother

Tue, Feb 24 2015, 11:25 pm

Did u consider a psychological / educational evaluation? I think that wld give u a clearer pic of what it is. A psychologist once told me that it's hard to diagnose since they all have similar symptoms. For example dyspraxia can look like PDD.
Regarding ur ?? Will a diagnosis help? My answer to u is two fold, definitely if u have a diagnosis u know what to focus on and know what help ur child needs. OTOH labeling a child is not the best thing. Unless u don't share with anyone. If principal, teachers, family members know many times they simply give up on a kid when the kid cld grow more if they wldnt know abt it.
Social skills can be taught. The younger u start the better the results will be. Michelle Garcia winner is excellent with teaching social skills. Google her and u will find many things to listen / read. It helped me a lot to help my son with his social issues.
Another point I wanted to share is that I recently heard that they don't diagnose Aspergers these days. They diagnose it as autism. I don't know the reason for it.

amother

Tue, Feb 24 2015, 11:44 pm

amother wrote:

Psychological/educational via the DOE was very basic. Even going privately I don't know that they would be any clearer than a neurologist. For whatever reason, the behavior specialist was pushing neurologist.

we already know what to focus on: the problematic behaviors. How would autism change it? There is no cure currently.

amother

Tue, Feb 24 2015, 11:57 pm

amother wrote:

Amother that posted above - getting the diagnosis will NOT help your child in the yeshiva system - judgment call are made many times, even if symptoms improve with all the therapy and help your getting. I would go for a diagnosis only if you more services approved. Good luck.

That's what I'm afraid of.

About not sharing, the school (including principals and teachers) would have to know because it would be on the IEP. I'm worried that when problems come up in school they will be quicker to tell us to find a special school if they think of DC as "autistic." I hope other things will help enough that we won't need that.

amother

Wed, Feb 25 2015, 12:03 am

I wld do it privately. And wldnt put my child in a special school unless the child won't know the work. As long as the child learns properly in a regular setting don't change.
I was recommended to put into special school, I totally didn't see any reason for it. My kid is in 7th grade and is doing just fine. Knows his work every week. He didn't have less than a 90% on all his tests. I'm glad I didn't listen to the recommendations since I felt the evaluator didn't do a thorough eval.

amother

Wed, Feb 25 2015, 12:05 am

OP, I just wanted to let you know that you write beautifully. However, you have a very specific style of writing that gives you away even when you post anonymously. I always know it's you, and recognize it in a minute... I don't know if you post personal information about yourself under your screen name that would give your identity away to others, and if you really care about that at all, but I figured I'd make you aware that it's easy for me to figure out who you are even when you post anonymously.

amother

Wed, Feb 25 2015, 12:11 am

Er, this would be a little less uncomfortable if I knew who YOU were... I did already ask whoever I could IRL and did not get very far which is why I'm resorting to this... besides who knows, nobody is really unique, maybe there are other amothers who happen to write like I do... anyway since you seem confident about my identity can you email me so I know if you are at least the same person I think you are?!

amother

Wed, Feb 25 2015, 12:22 am

I'm so sorry, I was not clear in my previous post. I have no idea who you are in real life, just recognize you as the same person who posts under a specific screen name. Although I often prefer to remain anonymous, I would not be devastated if people recognized me and knew my screen name, nor if I was recognized as to who I am in real life (especially if the advice I get is helpful...). However, I just figured I'd make you aware of the fact, just in case you post personal identifying info under your screen name, and don't want people knowing who you are when you post anonymously.
Regarding your child, I've found that the only real advantage of getting a diagnosis is the fact that services are often increased at that point. However, if you're satisfied with your child's mandate, there is no "real" reason to pursue one at this point. Also, some families qualify for financial assistance such as from the medicaid waiver program, SSI etc. once they have a diagnosis.

Mama Bear

Wed, Feb 25 2015, 8:48 am

Wow amothers here. Interesting back and forth. I, for instance, have no idea who the OP would be, her post is as generic as they come.

Just wanted to chime in that even if you get a neurologist's diagnosis it doesnt have to be on the IEP. You dont have to share the dx with the yeshiva. It might help clarify things for you, so you know waht direction to go in. Btw you might be pleasantly surprised. When I took my now 9 yr old to a neurologist at age 3, I was pretty sure they'd say PDD and I hesitated to label him. The neurologist said it was absolutely not PDD. Although some of his behaviors are pretty close to someone on the spectrum - the rigidity and tantrums, social issues - I think he has ADD rather than ASD, so that was a relief. So you might be surprised/relieved too if you check it out.

Good luck!

Raisin

Wed, Feb 25 2015, 9:23 am

I'm also bothered by this labelling of high functioning ASD kids as "autistic". My son was diagnosed as being ASD. So he has the same label as a kid who sits in the corner and stims and can't talk? Maybe they misdiagnosed my son, but he is just the most amazing kid. Behaves perfectly, listens to me, intelligent, funny, helpful, loving. I wish my other kids were more like him! He's just not that social and very very very occasionally has meltdowns.

In my case I would not have got the services he gets without a diagnoses, but I live in a country with lousy provision for kids with special needs. (for example, high functioning DS kids are not eligible for extra help. shock

) So a diagnoses was very helpful for us.

amother

Wed, Feb 25 2015, 2:45 pm

I wanted to offer my advice as I have experience with my own children and similar issue of diagnosing and labeling. I think you should definitely have him evaluated to the best of your ability. You do not need to tell the school about the eval or diagnosis. I was struggling with one child , and took her to many specialists to be evaluated...school never knew what we were doing...Ultimately took her to a psychiatrist who diagnosed her with a mood disorder and put her on medication which has made such an improvement I have no words! My point is, an eval can be super informative and you don't know what they will come up with. I don't know if you should only go to a nuerologist because I know one in particular that does very minimal testing and then diagnoses, but definitely keep exploring what the issue might be. If it is autism, you don't need to tell the school, but you can get more services like ABA therapy which would be super helpful.
As an aside I have a son that I could not figure out what was up with him but knew something wasn't right. After evaluating by an audiologist was diagnosed with auditory processing disorder. Labels are not a good thing, but they certainly help focus the interventions!
Best of luck!

amother

Wed, Feb 25 2015, 11:13 pm

MamaBear, thanks for sharing your experience. Did knowing that it is not PDD help you with treatment somehow? Does "thinking" he has ADD (unsure what you mean - was he diagnosed with it or not?) help you?

Raisin you and I know that high functioning ASD is not the same as what people may stereotype about autism, but on paper it's about the same, and I'm worried that it will be a problem with school - will they be quick to say "Your child is being difficult, go find a different place, we don't do autism here" or if we move and need to find a new school will they not accept us because of this? Thank you for sharing your view of your child. It gives me hope and a positive perspective about this whole thing. Of course if you're using the diagnosis to get services, the school has to know... back to the problem again.

Thanks for the encouragement, amother. Any advice how to "keep exploring what the issue might be?" I don't think I could get ABA without the school knowing about the diagnosis because it would have to be on the IEP which the school needs to have. And I think my DC might have auditory processing in addition to other issues (because that isn't enough to explain everything that's going on...) but I was told by one of the top evaluation places that they do not test for it at this age and it will be at least a couple of years before that could be diagnosed.