To test or not to test...

Kara - posted on 11/29/2008 ( 19 moms have responded )

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Trying to decide whether I should have my 2 year old son tested for Aspergers/PDD/SID. He displays varying degrees of attributes for these disorders... but I'm not sure how much it is interfering with his day to day life at this point. So I don't want to drag him through all the testing and treatment if it's not going to negatively affect him in his day to day living. But how on earth can you tell with a 2 year old, right?



I'm of the opinion that any tools/help I can get my son, the better off he'll be. My husband is resisting since he also shares alot of the same quirks as my son... and he's scared to learn that there may be a diagnosis for it all.



Thanks,

Kara

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Geralyn - posted on 12/08/2010

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I am locking this conversation because it is over 2 years old. Thank you.

Kelly - posted on 12/08/2010

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I was in a similar boat with my daughter at that age. By 4, though, it really helped her schoolteachers - and classmates' parents - to understand more about how she was expressing herself and how to deal with her oddities. Instinct can go a long way for caregivers in dealing with high-functioning folk (and I think 'high-functioning,' while descriptive, is still offensive - it seems so mechanical). Resisting labels and encouraging individual growth is my comfort zone, but I've found as a teacher that sound suggestions from professionals serve as helpful guidelines, and as a mother that tolerance from others is promoted when there's a genuine diagnosis. I have found the label not always predictive and accurate for my atypical kid, but overall definitely helpful - perhaps especially for her friends!

Julie - posted on 11/06/2010

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when you go to any appts. use the term at risk with the docs tell them your fears, let them guide you in the decision making. the testing isn't al that bad mainly a form filled out by you and playtime w/ a few questions for your kid

Bridgette - posted on 11/06/2010

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Hi, Often the parent "shadow's the autistic child's, quirks/behaviour's", the earliest true indicator of autism for mr was my son's walking on his toes as an infant, I look for it in any suspect child, That's just my personal opinion, goodluck with it all

Judi - posted on 10/24/2010

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I wish that I had got the test at 2, then I could have avoided the gut-renching speech group sessions that had me in tears before and after because Ricky was SO overwhelmed by the noise and the other children.
Remember this early on it will be two years before you'll need to get another test done for schools etc and with 2 year of intervention you could have the best talker, socialiser, writer, drawer, painter (though knowing my son I struggle with this concept) in the whole school. Plus the tests aren't painful, however the paper work afterwards is.

Good luck whichever path you decide

Megan - posted on 10/20/2010

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Wow, some of these responses are kind of rude. I can compleatly sympathize with the fight of wether or not to get testing done. I had a few issues that I had to get over before we got our son tested.
Labeling- EVERY family with special needs children I talked to EXCEPT ONE said they had problems with diagnosis because it labeled their child. School districts never adapted (because once a kid has a label, they can never grow and need less help right?), kids made fun of them, several of them ended up homeschooling to get out of the label situation. What I have learned since then is you need to find out about your school district in particular. You may have a great one like we do, but if not you need to know that and what it will mean for your kiddo so that you can be ready with backup plans if necessary.

My husband also shows a lot of similar signs and was scared of what it would mean to him- This was something that just took time and as I had to point out to him, maybe there will be something that can help him too.

My baby was perfect, I didn't want to give that thought up- It took me 4 months to make his 2 year appointment because I didn't want to admit that there was something wrong. Turns out the doctor didn't think it was autism either, but couldn't put his finger on it, so referred me to Early Learning Services who were able to help me.

What I learned was we did NOT have to have a full set of tests run. We could have a specialist or two do a primary assessment, which showed he was significantly behind in speech, it also showed his comprehensive was very low. Because those two were low, its not possible to score highly in the social areas and POOF, no set diagnosis to follow him around, but enough to qualify for services. From those services we were able to get assessments by a bunch of other therapists that were already doing assessments for other children in his class. We have a working diagnosis of PDD-NOS but no official diagnosis to date. According to the school district we will not have to get one till he is 8. Its scary but it really is best for your kidlet. Good Luck!

[deleted account]

Go to firstsigns.org and do the questionnaire. If it suggests there may be an issue, bring that up with your pediatrician. Since you didn't mention autism, I'm assuming his speech is age-appropriate. What types of sensory issues is he having? What types of ritualistic play does he engage in? Does he interact with others? How much do his quirks effect his everyday life? Answering those questions can help you gather information to share with your husband. [Often, one spouse is in denial that there are any differences that need to be addressed. Don't worry, it's okay.]

As for the people who are being harsh, I apologize. If this was 20 years ago, we'd all be telling you that he's a boy and he'll grow out of whatever issues he's having. But today, if you as his parent choose, you can get him some early help with dealing with the uncomfortable parts of life and the social aspects. Don't be too hard on yourself, though. Many kids with AS aren't diagnosed until well into elementary school. You are WAY ahead of the game at this point, so congratulations on being a parent who is paying attention to your son's development. What you do with it will depend on your goals for your child.

Christi - posted on 10/19/2010

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The longer you wait, the more you are hurting him if he does have ASD. My son was diagnosed at 19 months and we started therapy the next week and let me tell you, there is no way that therapy will negatively effect him at all. My son has started trying to talk again and has picked up some signs. He is like a whole new kid in only a matter of two months. There are differences in just a normal 2 year old and ASD and a professional will be able to help. The testing isn't horrible, it is mostly observation and questions to the parents, no stress on the kiddos.

Terri - posted on 10/19/2010

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GET THE TEST.. you can do therapy and IT will help and make things better..
I started ASAP on omega 3 and DHA on my son.. just put it this way.. HE is talking... not all kids will get any good from anything.. but therapy is a great start!!!!!
GET IT DONE.. they will have you come in every 6 months after to re check they can always change it as your child changes...

Kristen - posted on 10/19/2010

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Kara - I'm honestly a bit taken aback by this post. Please forgive me as if I sound "snarky". I am not trying to be. It is just that with all of the information out there about the importance of Early Intervention pertaining to Autism Spectrum Disorders, I don't understand how you can seem so reluctant to have him checked out at his age - (which at 2, is the recommended age to do so).
As a parent, I know you must want your child to be the best he can be. I know you and your husband must want him to have friends, do well in school and lead a productive life. I know this because it is what all parents want for their children. Whatever "quirks" or signs or attributes he is displaying need to be checked out asap. Early intervention is the key to helping your son. There is a small window of time where his chances of leading a "normal" life can be greatly helped and/or reversed.
You say you aren't sure how much of his attributes are interfering with his day to day life at this point, but what about down the road, next year or the year after, when all of his classmates and friends are moving forward and developing normally and he is not? Do you really want to take that chance with his future? If he is on the autistic spectrum, these behaviors will most definitely affect him negatively to varying degrees in his day to day living - they may be already. He may struggle with developing friendships, empathy, abstract concepts, fine and gross motor, speech and be ridiculed by classmates and others who don't understand why he is "different" just to name a few. I would happily "drag" my child through a mountain of testing and evaluations to potentially save him from a life of continual struggle, frustration and ridicule. That is my job as a parent. And in fact, I have done the very same with my own daughter.
We were told that she would never have friends and that my husband and I should "prepare ourselves" both emotionally and financially for her to eventually be in an institution. I decided right then and there to do whatever necessary to give her the best possible chance at a productive life. Had I not, there is no telling what might have become of her. Today, she is completely recovered - in the 4th grade at a public school, no aide or intervention. She is in the gifted math program and read, writes and comprehends at a 6th grade level. She ran for "student representative" , has taken acting and gotten an agent, is in Brownies and has many friends. We weren't willing to gamble on not trying anything and everything we could - and thank God we did.
There really shouldn't be any "decision" other than to get him evaluated - regardless of any fears you or your husband may have - because this isn't about you or your husband - but about your son and what is best for his future.
My best advice to you and other moms is, if you feel, in your gut, that there may be something wrong - then go with that mommy intuition. The fact that your husband is scared that there may be a diagnosis means he probably senses something is wrong with your son already - or he wouldn't have the fear. Deep down, you both must know something is not quite right. So, wouldn't you both rather know for certain what those problems might be, so you can help your son now, when his chances are so much better for a positive outcome, instead of waiting until it's too late to truly help him?
A diagnosis is a good thing. It means you can make a game plan, get him services and start helping him. The test isn't painful. It's designed in a way that is fun for the child - mostly lots of questions for you and your husband and games, names, building blocks, pointing, etc., for the child.
At the end of the day, you will know one way or the other - and you can decide where to go from there. But, at least you won't be wondering "what if"? I know it is not an easy place to be. It is emotional, stressful and uncomfortable to always be wondering, making excuses for behavior, judging him against others his age, living in a place of denial, etc. But, you need to do right by him and for him.
You know your child better than anyone else. You are both his biggest advocates. Find out what might help. He needs you both.

My heartfelt best to you all,

Kris

Cristina - posted on 12/04/2008

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hello there kara... our son is 4 and he just got a pdd-nos diagnosis in the middle of this year... i put off all the signs, thinking he'd outgrow them...at 2 i figured... how much should he understand? i have a typical 2 year old now (our firstborn is on the spectrum) and i realize how many things i said, that he just wasn't able to understand... it would've saved me alot of heart ache had i listened to my gut instinct and not everyone around justifing behavors with comments like "well he's just 2".. i too agree that early intervention is crucial for your son, if he's on the spectrum... it is an extremely emotional journey... my husband did not want to test our son, initially... his own fears of our son being "labelled"... but in the end, really it's not about us... it's about our son getting the help that he needs.. you'd be amazed how much more connected our son is to the world... he still doesn't understand the "who, where, what...how" questions.. but at least we know and don't make demands on him to "get it"... lack of eye contact... or lack of response to simple two word requests should give you some idea that there might be something going on with your son... it might not be... either way, to know is a powerful insight worth any discomfort or hurt it may cause you or your husband... best wishes, i remember the journey being a roller coaster of "yes, something isn't right here" to the familuar denial land... at least there all these dreams i had for my son would come true...

Deana - posted on 12/04/2008

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I agree with all the other mom's, the earlier you start with treatment the better. My son is 6 now, and the only signs he showed at 2-3 was being non verbal, so we had his hearing tested and then started him in speech therapy,(which really didn't help at that time), At this point the speech therapist recommended occupational therapy, which is alot of one on one at their level trying to make eye contact, which is when he started to respond slowly. Of course this was the first time we heard the word Autism, which like everyone who knows nothing about it thinks of the movie Rainman. It does change your life and thankfully I have a husband who was like okay, what can we do? and how do we help him. Then we learned about the pre-k ese program in our school district which takes kids at age 3. He was in this program for 2 years and 2 summer sessions, and our experience was absolutely the best. We had had a very hard time getting him diagnosed, their was always a waiting list, and then the dr would cancel, and then we had to cancel, so a year an a half later at age 5 he was diagnosed with the milder form calld PDD. AT age 6, he is verbal, but likes to repeat alot, especially movies, he has his quirks, and sometimes a stranger could not tell there is anything wrong with him, but then there are days that are not as good. He is now in Kindergarten in a inclusive language program that only has 7 kids, he receives, language therapy daily,as well as occupational therapy, but he goes to lunch,art and pe with normal kids. AS for the actual testing, the majority of it is asking you questions, the same questions asked differently a zillion times,especially since he is so young. and the other part of it is basically them playing with your child.

Grace - posted on 12/04/2008

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If you think your son may be on the Autism spectrum you should get him tested and start services as soon as possible. Early intervention is key. In most states they will pay for the services until the child turns 3 so you should get him diagnosed right away. In other states there are long waitlist to get your child services, so you will need to get on these right away also. It is hard for a parent to come to terms that their child isn't perfect, but you want the best for your child and should do everything you can to make sure that they can lead a happy productive life. Have a diagnosis isn't a bad thing, it opens the door to understanding what your child is going through and enables you to help them.

Tammy - posted on 12/03/2008

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Kara, you are right to want all the tools possible to help your son. It is always good to know what you can hang your hat on too (meaning a diagnosis). Just be prepared in case the diagnosis changes along the way as your son gets older. Look into getting him into an Early Childhood Special Education program through your school district. This just gets him a lot of services funded through the state education program if in the U.S.

Misty - posted on 12/01/2008

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There is a critical window for kids with Autism in order for the most progress to be made and for the best chance of success. The more intervention you can get, the better!!! There is more harm done passing up the intervention for fear of diagnosis and it being too late to make a huge impact. Get the diagnosis if you think it will help your son! I recommend looking at this site for The Bay School. Their philosophy is early ande intense intervention based on scientific evidence that this is whats best for kids with Autism.



http://www.thebayschool.org/faqs/faqs.ht...

Kerry - posted on 11/30/2008

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hello Kara, even if it is only for YOUR sanity go through with diagnosis/testing. Living with the quirks or eccentricities of 2 autistic spectrum people will be very difficult for you while knowing what is happening, I dont even want to remember what it was like when i didnt know why my children were so 'strange', i do remember it was horrible.
Early Intervention works to help the children adjust, surely your husband remembers how nasty the other children were toward him when growing up, and how he would resort to violence when the teasing became to much, does he really want your son to also go throught that pain? Perhaps its time he remembered what things were like when he was younger? a lot of the pain children suffer can be avoided with early intervention programs and diagnosis. Information is the key to helping your son have a happy and fulfilling life, dont you owe it to him to be fully armed?

Awdanis - posted on 11/30/2008

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We knew there was something wrong with my son when he would not point to his sippy cup or answer to his name. He only babbled and he never said mama or daddy. He was also a late walker. My husband was hesitant to do part of the evaluation because it involved a psychological evaluation. I think most men are. But this is for the good of the child and the family. The earliest a child is diagnosed, the earliest therapy can begin.

Mandi - posted on 11/30/2008

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I'm a step-mother of 2 boys diagnosed on the Austism spectrum, aged 15 and 13. One is high-functioning, the other is not. They are complete opposites. The oldest one wasn't tested and diagnosed until he was in the 1st grade. Neither one spoke, wouldn't look you directly in the eye, both were very aggressive, and the younger one was still eating baby food at 5 years old, among a laundry list of other symptons/signs. Their family doctor at the time told my husband that they were "spoiled". They have come a long way in the past 9 years, but to think where they'd be now if someone had recognized the signs right away... My advice is to get your son tested right away. Like Rachel said, the earlier you get a diagnosis, the earlier the interventions can begin and the better off your son will be now, and for the rest of his life. No one likes to admit there may be something "wrong" with one of their children, let alone themselves. But definitely convince your husband to let your son have the tests. Don't let his concern about himself take away what life has to offer for your son! Whether you receive a diagnosis of an Austism spectrum disorder or not, you'll all be better off knowing asap. Good luck!

Rachel - posted on 11/30/2008

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The earlier a Diagnois is made the ealer interventions can start,you have nothing to loose the tests used to diagnose are in no way traumatic. It is very common for a parent to resist, it is also common for a parent to find out they too are on the Autistic specturm after their Child has recieved a diagnosis.Your husband has come this far in life what harm would it do him if he did get a diagnosis it will not change him.Good luck you have done the right thing by thinking about getting him looked at at a young age.

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