Score of 176 - What does this mean? | Autism PDD

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I took the Childbrain assessment for dn and he scored 176.  I will not mention this score to his parents, and truth be known, I don't think they would really know too much about it anyway. 

I want to talk to them with dh (he has agreed whole-heartedly) and other family members have definitely noticed many things (please see post below for details).  It is just a difficult situation, even though I do have to do this not only for dn, but for my own children as well.  These people are in very strong denial and justify all of his actions, and he is going to cause harm to another without help.

So, what if I am wrong about this and it's all just a phase for dn?  I tried to be objective and even a little "benefit of the doubtie" on the assessment, but the score is still VERY high. 

What keeps me second guessing is that he does respond to his dad (definitely) and his mom (somewhat), even though he ignores everyone else as if they literally don't even exist.  (He also can point with an index finger and could since a little after 1 year.  He doesn't do it often, and mostly at things he wants when he is confined and leading or pushing is not an option).  He lets his dad read book after book to him and will name all of the pictures, he leads his dad all over the house by the hand to meet his needs (he has a word for "downstairs" when he wants daddy to take him there to play).  Most of his interactions with them are still limited and means to an end-like in nature, but he definitely is different, especially with his dad.  Now, ganted, dad devotes all of his free time to keeping this little boy up to speed, so he is very used to dad and his activities. 

Do some kids just react so differently (as in complete ignorance) to everyone else but one parent in particular?  I will say that dad had a special duty of aking care of dn throughout his b-day party, and sil gave her dh the strict order of keeping dn under control.  Since dn likes books, they read books for most of the party while everything else went on around them as if it wasn't even occurring. 

I am terrified that they will take him to a half-witt of an evaluator, the kid will be firing on all eight cylinders that day, and daddy and mommy will stretch the truth to avoid a diagnosis.  I know there is nothing I can do if that happens, but I just want to make sure I am really onto something and not just looking at normal 2-year old "he'll grow out of it/wait and see" behavior.

I know you all lead busy lives and I appreciate all of your advice.  It's just that this whole thing has been tearing my up for a while and I feel as though I am at my witt's end with this family.  Like I said, under normal circumstances this shouldn't e any of my business, but I am afraid that one of my kids is going to end up hurt by either il's comments or dn himself, and I will speak my mind in anger.  THAT is what I am trying to avoid.

 

sighinginnj39175.301875

Here is an explanation of the scoring.  The basic point is that there has to be problems in all three areas (language, social, play) and a high enough score.  The score you came up with is very high, but it does point out that it should ideally be filled out by both parents guided by an experienced doctor.

http://www.childbrain.com/pddassess2.html#grade3

You say you're afraid your own kids will get hurt.  What kind of behaviors are you concerned about?

Yes, he is just two, and no, they have no intentions of having him evaluated by ei at this time.

He's defintley delayed in at least self-help/fine motor (can't use utensils and only very recently started to be able to scribble, doesn't do puzzles, shape sorters or blocks).  He also seems to have a speech delay.  Like I mentioned in a previous post, he can physically say many words, but saves them all for "what's that" questions (only when his dad asks him because he doesn't acknowledge anyone else) and lableing pictuers in books.  He rarely uses language to communicate with others and NEVER to be social (greetings, etc).  He is also not really putting two words together consitently, unless you count things he repeats or prompts from his parents. 

He also does not know how to operate a ride-on toy on his own or use play ground equipment without help.  

 

If nothing else I think that test score would say there is definitely something going on here. I agree with not mentioning the test score, and actually I probably wouldn't mention the word autism at all. Maybe  developmental delay or speech, lots of kids have speech delays, something much less scary then the "A" word. Maybe having him evaluated by early childhood intervention, or mentioning this to the dr. Has he gone for a 2 year old well baby and the dr has said nothing? I would think he would cry through the whole appt and the first question the dr would ask is is this normal behavior? They did that to me. But then so many drs discount it too. They would refer her to early childhood intervention. Maybe call and get the info for her, or give her the number. Or maybe get a list of screenings as to where and when (here its on the school districts website) and if they aren't too hostile give that to them when you guys talk to them. EI  will see his behavior, and though they might not say autism, they would most likely set up some sort of behavior therapy, thats what they did for my boys, to deal with all those meltdowns and the cognitive delays. The therapists are the ones who mentioned autism eventually, and they did it very gingerly. they said they do show some characteristics.  That part about responding to one parent and NO ONE else is actually a sign of autism, I read that in one of the many checklists and sites I've been reading and now i can't tell you which one. My nephew was like that, mommy only, occassionally daddy, but not even grandma and grandma saw him every couple of days. He would just scream if someone else tried to get anywhere near him, if he knew them or not. Very clingy to mommy though. Good luck with this. You're a great aunt.

Yeah, I mean, sounds like there might be some problems, but it's too early to tell definitely if this is something he'll grow out of or not.  176 is a very high score, and the child doesn't sound like he has "severe" autism by any stretch (going by your descriptions), though he clearly has some inappropriate behaviors that the parents *should* be doing something about - even if it's just good, old fashioned consequences and rewards.  I wouldn't mention that the test indicates "severe" autism or anything close to that, because he really doesn't sound like he has severe autism.

If they're starting to withdraw from social gatherings than chances are they know something's up.  We went through a stage like that, too - when the girls were about that age.  It was a very tough time for us.

Hopefully, they'll eventually understand that having an evaluation for EI isn't a concession that anything's wrong.  EI does not require a diagnosis - just demonstrable delays.  Even perfectly NT kids would benefit (or, woudl certainly not be harmed by) the EI, so if the parent's just viewed it as 'erring on the side of caution' or, 'it can't hurt, might help', rather than thinking that the evaluation will lead to some sort of diangosis or labelling - maybe they'd be more receptive, I don't know.

Tough position to be in.

Also, autism needn't be something to be so horrified about.  They might have an outdated view of autism that's causing their resistance to seek out an opinion.  I mean, autism doesn't mean that the kid is non-verbal, mentally retarded, and staring off into space all day or raving and violent, etc.  It was my OWN outdated view of autism that caused me to dismiss the idea that my beautiful, creative, smart (but quirky) daughters could have it.

Just keep in mind that their opinion about what autism is might not be based on current knowledge, and that might be coloring their opinion of what you;re intimating to them (if you are).

 

fred39175.3809027778

As dn gets older he is getting very aggressive and territorial.  He pays no attention to kids unless he sees them touching something he was playing with or wants to play with.  He is the same with things like boaster chairs in his house.  On one occasion he actually tried to tug dd right out of the chair (he doesn't even look - he just grabs a shirt and starts screaming at the top of his lungs and pulling in the opposite direction.  Another time dd had a toy that she was actually bringing over to show him.  He screamed when he saw her with it and grabbed her ear and shirt and started dragging her around like a rag doll.  I was holding his baby sister at the time, and mom was out of the room, so by the time I put baby down and got to her she was screaming and crying in TERROR.  It took me a few minutes to calm her down.  Dn had done a similar thing to ds - he pile drove him right into the wall and ds hit his tailbone on the light.  It took a little while to calm him down from that.

When his mother saw it, she said NOTHING to dn and just said to me, "he's not used to sharing his toys with anyone."  She then apologized to dd for her ds's behavior. 

Recently il's have been blaming my kids for doing or not doing things in an effort to keep dn from a fit.  It they see one of them heading for the toy box and dn is over there, they tell my kids (who are 2 and 3 themselves - dd is YOUNGER than dn and MUCH smaller) to keep away - dn wants to be "left alone."  Or, in the case of dn's b-day party, ds was "spoken to" for carrying a piece of chalk over to listen to a story that bil was reading dn.  Dn had tried to grab the chalk from ds, and bil told ds to go back to the easle where he had been and not to distract dn.  (I wrote about this in a previous post). 

We haven't seen them that often in the last month or so because they are at a point where they are opting out of gatherings away from the home to avoid dealing with dn's meltdowns out of the comfort zone. 

 

Are they having him evaluated for EI? Is this kid just turning 2?fred39175.3397337963Can you send the parents the link to the Childbrain test, and let them take it themselves, or would that set them off and cause family strife?I have two friends whose boys seem to have some developmental problems. They both have alot of the red flags for autism. I have never come out and told them what I thought. However, when they brought it up themselves such as in expressing worry about their kids, I have tried to gently lead them in a discussion about autism, the signs, and encouraging an evaluation. I let them bring up the 'autism' word first however. Even when I added to this discussion I could see how absolutely painful it was for them to hear anything about it. They would eventually return to their denial. One friend got a little upset with me even though it was she who began to express worry about her son to me. Telling someone their child may be autistic is one of the most painful things for parents to hear. It is hard enough hearing it from someone who you know loves you, is close to you, but it is even harder hearing it from someone like a SIL who you may not have a loving relationship with. In some SIL relationships, there is competition and jealousy so if there already isn't a loving relationship between you and that il family, I would be cautious about telling them the childbrain score or that you feel the child is exhibiting signs of asd. If they are in major denial, I have to wonder what good it would do you for telling them anyhow. If they have any contact with the outside world, they probably know their child is a little different from NT children and they are probably starting to talk about it at home. I can tell you that my own sister was constantly nagging me to get my son evaluated. We were already alarmed with some behavior my son was exhibiting and we were getting him tested and then we sought treatment/therapy...well before my sister started alerting us to it. However, I do not have a close relationship with my sister and just didn't want to share this very painful, personal information with her. I just felt it was really none of her business. We were just taking care of the problem ourselves, privately. Finally, I told her we are taking care of it to get her off my back. But she was STILL relentless, she wanted, almost HAD to know, what the dx was. She could not rest. And once she said to me, "No wonder your kid is so smart, he must have Aspergers" as though his intelligence had to be due to a pathology, a problem, instead of it just being because of genetics or nurturing him. Comments like this made me feel she was jealous and competitive with me...so all the more reason to never share my son's dx or any personal information with her. So perhaps your il's are taking care of the issues themselves too, privately. And even if they aren't, the nature of your relationship with them might not lend itself to the kind of openness in communication about such a painful subject that you want to have. sighinginnj -- Have you addressed this yet? Has your nephew stopped hurting your kids? What's been the result of all the posters' advice?Hi,

I completely agree with what Tzoya said.  It may be best to discuss ways to keep your own children safe if your dn is aggressive with them.  I also think by what you described about your dn doesn't sound like severe autism.  He certainly SOUNDS like he's aware of his surroundings.  My son could have an object taken out of his hands at 2 years old,and not even notice.  It's also good that he responds to"what's that" questions. 

My daughter, who is now 17, was an aggressive toddler.  I couldn't take her anywhere.  She hated to share, and loved to hit.  I know for a fact that it was because I really never addressed it, and made excuses like your il's.  When she turned 4, I took her to a psychologist, because I thought she might have adhd.  She was VERY impulsive and hyper.  She tested her, and said she was in need of appropriate discipline.  I was very young (20) when she was born, and I always treated her like a kid sis.  Well, she walked ALL over me.  I really thought something was wrong with her.

Anyway, I started implementing reward charts for positive behavior.  It worked wonders.  Now she is a great kid, never been in trouble, and I am so proud of her.

I would definately mention how bad it makes you feel to have your dkids hurt when they come over. Certainly as parents they should understand that.

Good luck, and keep us posted.

naka ma

hi

somtimes you have to take a step back and let his parents deal with their own child.  I am not saying it is right but he is not your child.. you could give them some information about autism, just hand it to them..I have son he was dianosed in aug 2006 and he will be 5 in june, you can really see the differnece between him and other kids his age.  I dont now if I would have been able to give up MY dream of him being a perfect child at are 2.. because it is hard to see things that are not right because you want him to be perfect.

 

laura 

I won't see them until next week. I will update then. I really don't see the situation improving though, but I will try my best.

Just so you know, sharing is a higher level social skill for little ones. Even NT kids have a hard time with the concept in the beginning.  I would hide anything of your kids' that they don't want touched and only bring those things out after your nephew goes home. You have to explain to them that their cousin is not at the point where he understands keeping his hands to himself. That he will learn as he grows older but, for now, they have to give him a wide berth and not expect him to share. Tell them that the rule when they go over to his house is to not touch anything.  I think bringing things they can play with out of his reach (like the bikes) is an excellent idea.  Or things that everyone can share without touching, like a video he might enjoy.  Or you can supervise play with him that HE might enjoy. Like having your children push him on his swing.  SUPERVISE is the key word here.  I would NEVER leave them alone with him.  I still supervise my 16yo pretty carefully when he's around much smaller children.  He really has NO idea how much bigger he is than they are an something ordinary he might do (like tag them) could send them flying!  Those of us who must be around autism a lot need to factor this in to our lives. Good luck.

[QUOTE=3flowers1fish]

Ok,  you don't even know if the kid is ASD or not.   ... but I just want to make sure I am really onto something and not just looking at normal 2-year old "he'll grow out of it/wait and see" behavior.

This is from Yale...  Although some children show autistic patterns of social interaction almost from birth, it can be difficult to give a definitive diagnosis of autism before age three. This is because rates of development in infants and young children are widely variable.

I think you should calm down a little and don't send an email ... I believe if you bring this up as a SIL you're going to seem like you're jealous or malicious.  Burn your childbrain test results and don't take them around to relatives.

But if you decide to tell her... at least show up at her door to tell her your opinion of what's wrong with her kid.  The only thing you could do worse is take your childbrain results with you and use it as evidence. 

“Honesty is the cruelest game of all, because not only can you hurt someone - and hurt them to the bone - you can feel self-righteous about it at the same time” D.Van Ronk

[/QUOTE]

You certainly are entitled to your opinion, but if it hadn't been for my mother coming to me and insisting something was wrong (and he was almost 7 years old) I would have continued with my head in the sand.  None of us knew it was autism, she just knew something wasn't right.  Yeah, it hurt, and I cried when she approached me with the idea that I needed to take a closer look, but I am forever grateful as well.  Autism is being diagnosed sometimes as young as 18 months.  How old is that Yale quote that you posted?  As someone who missed the early intervention train entirely, I would hate to see any child miss an opportunity to get help.  I still think you should give them some options.  What they choose to do with them is their business.  Of course, this is one of those hot button topics where you are damned if you do, and damned if you don't, and I've been on both sides of the desk.  It would be nice if there was an "Easy" button for this one

IBGECKO39176.2971875

IBGECKO ... ITA with your post!  I also had my head buried ... and althugh Nick was dx'd at 4 instead of 7, I think of several years I missed as well.  If it wasn't for his ST giving my books, "suggesting" I get another evaluation, (and yes, I was a little ticked off at first), I don't know how much longer it would have been until I got it done!

 

Thank you, Tzoya.  I thought about this a little more last night, and think I may just start with an email to remind them of my dd's party in the next month.  I may suggest that they bring a few toys of dn's so that he feels comfortable and has a few toys that he can play with. 

Don't get me wrong, I won't keep him from my kids' toys, but at least if something happens he has some sort of retreat by his parents.  This is the only thing I can think of right now that isn't overly confrontational and will put them on the defensive.  I will also do the same when we go there - my kids will bring their own toys or we will go outside and ride trikes and bikes. 

Until he's ready to share or they are ready to seek help, I cannot force my kids to always take the brunt of his actions.  Now, down the road if they are seeking help and have some professional strategies/suggestions to follow as per a trained therapist, then we wll do what we have to do to explain to our kids and work with our nephew in the best way possible. 

Thanks again!

 

 

sighinginnj39176.2268634259This makes the situation WAY easier to deal with.  The truth is, your ONLY problem is confonting this couple with the fact that you must keep your own kids safe.  Leave your nephew's possible disability out of it completely. Talk to them about how the three of you can make a plan that will keep your kids safe when they are around their cousin.  DO NOT BRING UP ANY POSSIBLE DISABILITY ON THE PART OF YOUR NEPHEW.  If the parents bring it up, follow their lead, but keep the objective in mind.  Your objective needs to be to come up with SOME sort of plan to keep your kids safe.  Put your energy into that because that is a legitimate area of concern.  Let the parents process the disability the way they can handle it.  I seriously doubt they are completely unaware that their son is developing abnormally. They are just in denial of it.  But there can be no denying that their son has hurt your children.  Focus on that.The truth is, I probably wouldn't tell them otherwise; not because I don't have my dn's best interest in mind *at all* (I am a special ed teacher and know first-hand what these kids face everyday through the social demands of the public school), but because I do know that this really is such a touchy subject and really none of my business under normal circumstances.

I am aware of the current statistics, and early diagnosis, etc, but more importantly, I am aware that when parents are in extreme denial, there is really nothing anyone can do to change that. However, as I previously mentioned, this does not *have* to be about asd, and all suggestions about what to say are open.

No matter what I say, I would like to convey in a very diplomatic way that he cannot continue to act out toward my kids in such a manner. Now, whether I include literature or a questionnaire in the mix is dependent on the advice I get here from those who have btdt. Do I think that's what they're dealing with? I am not sure - I am not a specialist. Therefore, I know I would NEVER mention asd to them directly. That was never my intention anyway.

I know that at one time many of you may have been in that difficult stage where you may have known something was amiss, but not exactly what you were dealing with. Maybe people tried to pass off what was going on as bad parenting or a child with not enough discipline, etc. In this case, I am pretty sure lack of discipline/bad parenting isn't the culprit, and there may be something else going on. That said, I am lost for words when I approach the topic. Maybe I haven't made myself clear all along, but when you were in the early stages perhaps of denial or before a diagnosis, what would have been the best way for someone to have approached this particular issue with you?

Yes, I am concerned for my own and less about getting my nephew help. Of that, I am guilty, but I certainly do care about this little boy as well as keeping my dh's family intact. It's not an all or nothing thing on either end.

    



sighinginnj39175.8019097222

Clearly, there are a couple of issues here.  1.  That you believe this child has something wrong and needs some sort of intervention.  2.  That you're mad as a wet hen that your kids might get hurt and the other boy's mother will do nothing about it.

I agree that you cannot stand by and let your children get hurt. It's hard to give advice without really knowing the players, but whatever you need to do to keep your kids out of harm's way is what you have to do.

I feel from your post that part of the reason you want to tell these people that their child has ASD is not because you are so worried about THEIR child, but because you are angry that the parents are standing by allowing their child to continue to behave in such a way that might harm your own kids.  You have a right to be angry about that. You have a right to confront the parents about that. But I don't think your motivation is genuine worry over their child. 

The truth is, it doesn't matter what your motivation is.  You have only two choices.  Tell them or don't tell them.  Your question is, is there any way to do this diplomatically? The short answer is no.  You will have to take the risk that they will hold it against you. 

In trying to figure out what to do, you might ask yourself whether you would say anything to them if their child hadn't hurt your children.  That might help you clarify your own motivations.  I don't know the answer.  Maybe you do. But knowing the answer is key to understanding what to do next.  Good luck.

Research, by the way, shows autistic children are not unresponsive to their parents.

Ok,  you don't even know if the kid is ASD or not.   ... but I just want to make sure I am really onto something and not just looking at normal 2-year old "he'll grow out of it/wait and see" behavior.

This is from Yale...  Although some children show autistic patterns of social interaction almost from birth, it can be difficult to give a definitive diagnosis of autism before age three. This is because rates of development in infants and young children are widely variable.

I think you should calm down a little and don't send an email ... I believe if you bring this up as a SIL you're going to seem like you're jealous or malicious.  Burn your childbrain test results and don't take them around to relatives.

But if you decide to tell her... at least show up at her door to tell her your opinion of what's wrong with her kid.  The only thing you could do worse is take your childbrain results with you and use it as evidence. 

“Honesty is the cruelest game of all, because not only can you hurt someone - and hurt them to the bone - you can feel self-righteous about it at the same time” D.Van Ronk

I am confused as to how I would seem jealous and malicious? Anyone who knows me well knows that this is not my personality at all. Also, I would think malicious people would exploit the child every chance they had, and the same goes for jealous people (maliciousness stems from jealousy anyway).

I wasn't going to do anything with the results I came up with anyway (thought I made that clear already). I just saw the link and curiosity brought me to take a look. It was interesting how high the score was. I have seen so many kids at two and dn is NOTHING like any I have ever seen. I know some will say, "every kid is different," but it interesting how much the same they are as well (hence the term nt).

I read the book "Could it Be Autism?" for a grad course in the fall, and if my memory serves me correctly, the author (who's also involved in the Website First Signs) talks about how children do follow a normal sequence of development, and although there is variability, a child should not be consistently missing milestones.      

Further, I am a little defensive over the second to last post mainly because of the last quote. I know asd is a very touchy subject, and especially with the parents who face it in some capacity. In the end, we all need to keep in mind that we all want what's best for our kids and that Mommy instinct always kicks in when we feel they are being threatened.

No one here really knows the scenarios that played in my mind on Sunday at the party. I imagined myself a thousand times "telling bil like it is" for what he said to my ds. Instead, I have decided to come to this site where others have btdt and would help me figure out what to do.

Whether or not he's asd is not the issue, but he definitely has to have something going on the more I think about it. The question is, how do I tactfully approach this with his parents, even if it is superficial and says nothing of pdds etc. I CAN'T have my kids getting hurt, and like anyone else, MY kids are my priority.

sighinginnj39175.7291782407I would send it and in the subject just put check this out. Then mention that you did this for your kids and it helped. Be vague and let them think they came up with this on their own. Then maybe they will see the light!!??

You know, I've been thinking about this.  176 indicates severe PDD.  Granted you are not around your nephew every day, but even with as much as a 50 point swing to allow for this, you are talking about a child in need of immediate and intensive help.  This is just my opinion, but I don't think you can afford not to say something, and risk the wrath of family members being pissed off.  Show the test scores to your husband, and what they translate into, and educate him on severe autism, and how early intervention is so critical.  If saying something means putting your marriage at risk, then I guess I would advise holding my tongue, but if it were me, I would send them the ChildBrain test and voice my concerns immediately, and advise them of how important early intervention is, especially for more severely effected children.  Then, at least you can say to yourself, "I did all I can do".

IBGECKO39175.5586574074

I think that if you mention this to the parents, you will be persona non grata for awhile.  But, eventually, they may thank you.  It's a touchy subject.  If you DO broach this and they don't respond positively, you must drop it.  The last thing you want to do is send these parents on a quest to prove you are WRONG. That will delay them getting their child intervention even more.  Good luck.

I would go ahead and e-mail them the link.  At least even if they don't do anything, you will know you tried.

 

Believe me, I have considered doing that.  I just don't know what I would preface the link with? 

Any suggestions?

 


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