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Should I seek a diagnosis?

post #1 of 18
Thread Starter 

My 8-year-old son has had a lot of quirks and other things that have bothered me for many years, especially his food issues (serious selective eating). I have long suspected him of having Aspergers but have never sought out a doctor's diagnosis or anything. This fall things have gotten really more problematic. His tantrums and inability to deal with changes and social situations have become worse. He has had more voilent outbursts at home, which has been stressful to say the least. I can't tell you how many times I have been driven to tears this past six months or so. He really just wants to sit alone and watch TV, or maybe play video games. School has not been a problem. He seems to cope well as long as he has a structured schedule. Summer vacations have been really hard. Things are better when he is in school. His grades are wonderful. He doesn't really have a lot of friends, and he seems to be really gullible, easily taken advantage of, and unable to read other people or understand jokes or sarcasm. I have spoken to the school psychologist and the social worker and I filled out a questionnaire, which shows that he is on the Autism spectrum. It's not a diagnostic tool, but they will be able to meet with him regularly and do some sorts of practice with social skills, as well as coping and calming skills. They have also given me some good advice about things to do at home. The psych says that taking him to the doctor to be diagnosed would not be beneficial to him at this point. I am not sure if I should or not. Part of me just wants a diagnosis. But does it really matter? Will it matter more in the future? 

 

 

post #2 of 18

Why do you want a diagnosis?  What will it do for you?  For your son?

 

I think that if he is in school, a diagnosis will likely be helpful.  You can then seek services or accommodations if he ever needs them.

 

If your mother-intuition is telling you that this would be helpful, do it!

post #3 of 18

Why does the psych say it's not beneficial?  Is s/he concerned about stigma?  Is s/he concerned about how it would affect how DS sees himself?  Would you qualify for additional services through the school if you had a dx?  Do you have health insurance that would pay for additional therapies with a dx?  If the only reason to do it is to help with your own acceptance, maybe put it off.  You know he's got an issue.  But if there's something the school or insurance can do with a dx that they can't do without one, I'd consider it.

post #4 of 18

I'm confused why the psych would say that a diagnosis wouldn't be beneficial. I think you have to trust your mommy-instinct on this one.

 

If it's autism, then you can begin to implement things at home and at school that meet his needs better. If it's not, then it could be that the range of solutions would have to be different. An autism diagnosis can sometimes bring accommodations at school that can ease a lot of things. It might also get you access to occupational therapy which can help him feel more comfortable in his skin (if sensory issues are an issue) and work with his picky eating.

 

The other thing is that it's often a very long wait to get into seeing a developmental pediatrician or someone else who can diagnose autism. You can get the ball rolling and then always cancel if this dramatically improve. But if it is autism and you wait, you've lost that time.

post #5 of 18

no time to write now, but subbing.  we're at the same crossroads, trying to figure out how to pursue a dx so we can seek more services, after years of feeling like it is a pointless label if we know him and understand his needs. 

post #6 of 18

I am glad we got a dx for our ds.  We had known he had Asperger's for a couple of years already.  He was almost 8yo when he got on the waiting list and it took more than two years before he had the dx. 

 

We thought we were getting the dx so he would have simpler access to services in school -- but when we got the dx we had already reached the point that we were homeschooling again.  We are not pursuing any services at this point although he has done some social groups and one-on-one therapy since he got the dx.  The dx means it's official and it can be easier to communicate about his problems.  In some settings it may open doors.  In some situations it can increase understanding and create a positive response.  As he learns he is different, a name for his challenge that he can use is better than a "maybe it's this" according to his parents' best guess.  There are what-ifs: I can see our ds possibly getting into trouble with authorities in the future--perhaps as a teen when he is out on his own and does something inappropriate--it will be nice to be able to have the official dx to back us up when claiming he has difficulties that are not fully his fault. 

 

The dx is a tool in your pocket that could come in handy at any time.  It's good knowing it is already done because we just don't know what situations the dx can be helpful in.  Deciding to go for a dx when something comes up later that makes it useful could mean that if you have a long wait the opportunities could be missed. 

 

I don't think it is a pointless label or a stigma.  I do think it is extremely helpful when your child faces a big challenge for him to be able to call that challenge by name.  To look it in the eye.  To tell other people about it.  That label has been tremendously helpful for us as our ds approaches adolescence.  Everyone who has ever expressed the idea that the label is itself harmful is typically also expressing doubt that our ds is anything more than spirited and "all boy".  Which infuriates me.  People who don't like the labels seem to want to believe that the related problems aren't quite real IME.

post #7 of 18


this is such a good point!  if you are feeling unsure, go ahead and make that appt.  you will have plenty of time to change your mind!

Quote:
Originally Posted by littlest birds View Post

I am glad we got a dx for our ds.  We had known he had Asperger's for a couple of years already.  He was almost 8yo when he got on the waiting list and it took more than two years before he had the dx.

post #8 of 18

My 8 year old ds sounds sooo much like your ds.  The quirks (including limited diet) that have always been there, the behaviours that have stayed or become worse as he gets older instead of diminishing.  He is so routine-oriented and needs to control his environment and when he can't it is very stressful for everyone.  He can become anxious, aggressive and very unpleasant.  At school he is wonderful and holds himself together very well.  Academically he does very well but I think the social part is becoming a bit more difficult as he gets older.  He is having more trouble finding connections with his peers.  It is like walking on egg-shells because we know something is going to set him off at any point during the day.  We have just started the evaluation process.  I have no idea what, if anything, will turn up.  But I can only do so much reading and implementing of my own ideas before the stress gets to everyone.  We just don't know what to do any more.  So, we will look for a diagnosis to guide us and give us access to resources that will help our son.    

post #9 of 18

FWIW, our ds also did great in school at that age and I could see only the beginnings of the bullying and other social problems. 

 

Over the next two years, the academics deteriorated because the expectations were more complex.  It was no longer enough to be a math whiz and early reader if he couldn't follow through on the directions or understand less concrete aspects of content.  In a classroom setting, he had looked impressively gifted though odd in second grade, but not in fourth.  By then he was clearly missing the point of almost everything presented by the teachers.  He also got further and further behind his peers socially.  Where he had almost fit in at 7/8 years old he was much more out of step at 10yo.  I feel the gap is growing wider still. 

 

(He will homeschool at least through middle school because the social dynamics and personal responsibility expectations combined are simply beyond him and the overstimulating environment in combination with that was too stressful to even allow progress.)

 

I remember that when ds was 6yo we weren't sure the dx mattered.  Now we are sure it does.

post #10 of 18

I believe that it can be quite beneficial to get an official evaluation/diagnosis from a Neuro Psych.  Although your son may not have trouble at school right now, that could change at any moment.  If you have a diagnosis, it can make it easier to get him the services he needs (both at school and through health insurance.)  With a diagnosis, you may even be able to get someone to come to your home to work with your ds.

 

By the way, my son has severe eating issues, too.  It's a constant battle.  Hugs to you.

post #11 of 18

as a neuropsych/school psychologist, I can not IMAGINE why the school psychologist is suggesting that you not evaluate.  The snarky part of me thinks that maybe her caseload is long and she is hoping to avoid adding another kid to her list until things slow down.  Not saying that is the case, but I literally can't imagine why, especially in the school setting (where the school can later be in some deep doo-doo if your son does eventually qualify for services down the road and it comes out that you thought about evaluating earlier but were steered away from the process by a school representative).

post #12 of 18

I would not rely solely on the school, no one has your child's best interest at heart like you do; who knows what there motives are for saying that. I can't imagine how an official diagnosis would be a problem. Usually, parents seem to avoid a diagnosis because they don't want their child labeled in school--but your child's school has already labeled him.

 

The family therapist we went to last year discouraged us from moving up the therapeutic food chain and it was a mistake.

post #13 of 18

A dx can make it more "real" for you--a good thing and a bad thing. We knew that there was something different about our son close to his third birthday. We actually had our pede at that time dismiss us that "all kids are picky eaters at this age".

 

Finally getting dx gave the issues a name and then a way to learn about it and fix what could be fixed and live with what couldn't. We knew of course but it wasn't until we got the dx for our son that we both just cried and cried like we never had before. It also helped us get him some OT and speech which has been helpful. And it has changed the way we deal with normal things everyday that other parents take in stride. Labels may be bad in some cases--but calling things by their right name can also be extremely emotionally beneficial. 

post #14 of 18
Thread Starter 

Thanks for all of your replies. I didn't get any emails telling me I had any so I didn't know anyone had responded! I love having some support.I think the reason the psych said it wouldn't be beneficial is because there is no medication they can give him. Also he is not having any problems in school - YET. Things are getting more tense socially for him. We had some issues with a babysitter this week and i had to explain to her that Drew  "isn't like the other kids, and needs to have things a certain way, and he might possibly be on the autism spectrum, probably Apsergers." I thought it would be so much nicer if I could just tell people a name for sure, so my husband and I could just know for sure.  His pediatrician has referred him to a psych and I think I will take him. 

 

 

 

 

post #15 of 18
Quote:
Originally Posted by paisleypoet View Post

Thanks for all of your replies. I didn't get any emails telling me I had any so I didn't know anyone had responded! I love having some support.I think the reason the psych said it wouldn't be beneficial is because there is no medication they can give him. Also he is not having any problems in school - YET. Things are getting more tense socially for him. We had some issues with a babysitter this week and i had to explain to her that Drew  "isn't like the other kids, and needs to have things a certain way, and he might possibly be on the autism spectrum, probably Apsergers." I thought it would be so much nicer if I could just tell people a name for sure, so my husband and I could just know for sure.  His pediatrician has referred him to a psych and I think I will take him. 

 

 


There is no medication for Asperger's, but Asperger's may not be the only issue. Schools generally wait until a problem is REALLY bad before acting. Since you, and not the school, are suffering the worst of his problems it is not important for them to look below the surface. I would not act/not act solely on the advice of the school. Ds' school told us "they" don't consider ADHD before 3rd grade and continued to draw up new behavior charts for ds and suspend him when they didn't workeyesroll.gif.

 

My son had tantrums, inability to deal with changes, and social situations, though he was also having problems focusing and being defiant in school. He was diagnosed ADHD and possible Asperger's. He is on medication and doing CBT.

 

Also, "screen time" (TV, computers, video games) tend to increase behavior issues.

post #16 of 18
Quote:
Originally Posted by Emmeline II View Post

Also, "screen time" (TV, computers, video games) tend to increase behavior issues.



 So true!!! I've always wondered why that is!! But it's an ongoing battle to allow them to have it a little but to set limits....it seems endless. I recommend reading any of Jane Healy's books to get more insight on the computer/tv/video game issue. I've always wondered why these things seem to affect our kids on the spectrum more??!!

post #17 of 18
Quote:
Originally Posted by terra-pip View Post



Quote:
Originally Posted by Emmeline II View Post

Also, "screen time" (TV, computers, video games) tend to increase behavior issues.



 So true!!! I've always wondered why that is!! But it's an ongoing battle to allow them to have it a little but to set limits....it seems endless.


For awhile, I literally set a timer and if he tantrumed, so be it. I also let him know that if an hour wasn't acceptable he did not have to watch any at all.

post #18 of 18
Quote:
Originally Posted by paisleypoet View Post

 I have spoken to the school psychologist and the social worker and I filled out a questionnaire, which shows that he is on the Autism spectrum. It's not a diagnostic tool, but they will be able to meet with him regularly and do some sorts of practice with social skills, as well as coping and calming skills. They have also given me some good advice about things to do at home. The psych says that taking him to the doctor to be diagnosed would not be beneficial to him at this point. I am not sure if I should or not. Part of me just wants a diagnosis. But does it really matter? Will it matter more in the future? 

 

 

 

What if the school is wrong?  Since the school isn't qualified to diagnose, they are only making a best guess.  That just wouldn't be enough for me.  I think it's good that the school wants to help, but without a thorough evaluation from a qualified professional, you are missing out on so many other pieces that would be helpful to you -- areas of strengths, for example, as well as real diagnosis, if applicable, which could lead you to outside resources that may be extremely helpful.  


 

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