Husband won't tell 13 yr old son about NVLD diagnosis

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I met my husband when his son was 11. He said his son is not like other kids but didn't elaborate. When I met his son, I had never met a child like him, he would have one-sided conversations, talk about electrical outlets and GPS systems obsessively, he walked a little on his tip toes, talked very loud, had very restrictive eating habits and seemed to get 'stuck' about things. I thought he spoke to his dad more like he was ordering him around and often seemed rude and to say the socially wrong thing.

He went to an LD school but all my husband would say is he had some mild learning troubles. Well, after living with him for awhile, I Googled his traits into a search bar and all these Autism sites came up. I read about Autism and I felt I was on to something but when I talked to my husband he said "a doctor looked at him for 5 minutes when he was 4 (he only started talking at age 4) and said 'autism' ". I said "what did you do?" and he said "I never had any further evaluations, I don't want him labeled".

Fast forward to now and he's never been in public school and has all these social problems. I decided after a year of reading about Autism that he was most likely Asperger's, he sounded just like an Aspie except he wasn't good at math. My husband dismissed my conclusions and said I wasn't qualified, I said I know I am not qualified (I am a nurse) but really you should have him evaluated but he refused.

Then his school only went up to 6th grade so he had to shop for a new school. His dad applied to 2 schools and one required a psycho-educational evaluation.

The psychologist found he had NVLD which I had never heard of before but it fit him even better than the Asperger's.

He got into both schools but his dad chose the school that hadn't required the evaluation. I said "so you aren't going to tell the school?" and he said "no". The school is for kids on the spectrum as well as things like ADHD, I said "it may help them to better assist him if they know what they are dealing with" but he felt it better not to say anything.

He has never told his son about the diagnosis, he thinks there is no point. His mother tells him, when he asks why he is at an LD school, that he just has some concentration problems, both parents won't tell him.

In the meantime, he is hitting puberty with no friends, no idea how to make friends - his parents don't try to get him to stop talking obsessively about things (they actually encourage it, they buy him things like electrical plugs/extension cords and car keys, his dad bought him a $70 Volvo key for finishing 6th grade and it doesn't operate anything, we don't own a Volvo, he also has a GPS system even though he has no car) and never clue him in that he needs the conversation to go both ways or people are going to tune out.

His son also has trouble playing with kids. I have a 6 yr old girl and an 8 yr old boy, both NT, and his son can't lose, doesn't know how to play fair and will hit my son if my son beats him at a game. He also tells my kids they are stupid and he'll tell my son, he does his math wrong when math is one of my son's best subjects. He was diagnosed with NVLD and also as math disabled but he thinks he is very good at math because his mom tells him so and he takes everything literally.

My kids are starting to figure it out even though I haven't told them anything about the NVLD. I don't think it will be long before my son figures out there is something 'off'. At 8 and 6, in many ways, they are more mature, they don't panic when left alone and they can figure out things to do in their spare time. My stepson will panic if my husband goes to the store for 30 minutes. I know it sounds strange but both my kids together take up less time than my stepson.

Oh and there is a baby on the way, and she is going to enter a world where her 13 yr brother may just need more attention than her and it's odd. Another thing is my stepson is very clumsy, trips and falls a lot, he seems to have 2 left feet and when he talks about carrying the baby I get all nervous. I told my husband we'll have a rule that none of the kids can carry the baby, he agreed but seemed annoyed that I don't trust his son to carry the baby. My stepson will often stand too close to me and won't even realize he is standing on my feet at times! So of course I have my concerns but want everything to be equal with all the kids.

He'll stand too close but if I put my arm around him or try to hug him he stiffens up and pulls away.

Also, he has this thing about sitting in the front seat of the car. We took a trip to Disneyland, a 5 hour car ride away, and he got all bent out of shape that he couldn't sit in the front. My husband asked if I would let him sit in the front but I am a tall woman (5'9"), there's more leg room in the front (I also get easily car sick) and it felt very strange that he just didn't understand that the kids sit in the back. It turned into a BIG drama and before you know it, I was letting him sit in front for part of the trip, but once, when I was in the front, I heard my son, who was 7 at the time, start screaming 'you're hurting me! stop! stop!', I looked back and my stepson had his elbow in my son's neck, he was annoyed that with 3 kids in the back, elbows were touching - he had my son pinned to the backseat, his elbow in his son's throat and I screamed for him to "STOP!". My son couldn't move as my stepson is more than twice his weight. Well that turned into a big BIG drama - and all the dramas always end the same way, somehow they get turned around and the sympathy goes to my stepson. I almost left my husband because of this (we weren't married at the time) but he really is a very nice man - it's only concerning his son that he acts differently. You would think, by my stepson's reaction, that no one ever says BOO to him, and his mom was all upset, saying he would be psychologically damaged from my yelling at him. I said "what about my son? He wasn't doing anything and he's also 4 years younger!" but the incident was followed by trips to a therapist and all this drama that his mom created.

I don't spend as much time as I used to with him and this seems to upset my husband but my stepson's idea of a fun thing to do is to count the electrical outlets in the house. He also tends to 'attach' to me if I talk to him and then will follow me around and I don't know how to get him to 'detach'. He stands right next to me, inches away, I can feel his breath, and he'll drone on about something he is obsessing about, a gadget or something and it's exhausting!

I want to take him to the mall and I try to interest him in teen activities to no avail. He just plays computers games, watches one certain TV show obsessively and eats. He is nearing 160 lbs at 5'2" but if I say anything to his dad, it annoys him. He even said to me once "well his weight is all in the center, his legs are fairly thin", I said "having weight in the center is the worst place to carry weight!". His mother says "he'll have a growth spurt" but see his mom and dad are not tall people (5'3" and 5'8"), so I don't foresee him being a very tall adult.

I don't know what to do, my son and daughter are doing sports and dance and all the typical things and because they are so active they are rail thin, it's not something I need to worry about at the moment. But I worry about my stepson and having the NVLD, not knowing he has it, and hitting puberty overweight.

I took him to "High School Musical" and "Twilight" (my idea, I thought he should see some teen flicks) but all he commented on were the golf carts in HSM and the Volvo in Twilight, the people, what they were saying and wearing, none of that made any impact, it was like he didn't even notice.

I also encouraged my husband to redo his bedroom which hadn't been done since he was born, it was yellow with a baby border w/baby animals and a baby lamp. Nothing had changed in there since he was in diapers. You would assume it was a toddlers room. I encouraged my husband to 'cool' it up for him and he did. At least now, if he has friends over, his room looks more age appropriate.

This is all still relatively new to me and it feels strange that as the stepmom that I am here and the parents don't bother but he'll be part of my life for a long time.

We are expecting a little girl and all the tests have been normal but I am aware that autism is not something that can be found through genetic testing and because we don't know where my stepson got it from, there is that chance our baby girl could have it although the geneticist thinks it is x-linked from the mother (just his theory, I know there are tons out there) and the chances are slim. His looks and personality are from his mother but on the other hand, my husband was a straight A student who went to MIT, and there are all those "engineer" theories, although my stepson struggles in school quite a bit. If my daughter was on the spectrum that would create another strange scenario because I would be very proactive about getting her help and it would probably still be 'hidden' that her brother is on the spectrum.

I guess I am just venting here because there seems to be nothing I can do. Sometimes I honestly think it may split up my marriage. I hate to say this but then I think, well in 6 years he'll be done with high school and maybe move out - but that may be highly unlikely (given his dependency) and it also makes me feel mean.

If anyone has any good book suggestions, or know of any teen groups in the Bay Area, more specifically the San Mateo County area, it would be greatly appreciated. It would be great if he could meet some kids like himself although that leads me to a new dilemma - how can he join a group for teens on the spectrum if he doesn't know he has it?

holey cow~! you've walked into a mine field.

i feel bad for the stepson, as my parents never acknowledged there was anything amiss with me and when i "went out into the world" i got shredded and didn't have a clue why. it was several miserable years there, and i think the young man in this post is going to deal with the same issues. it's no favor to a child to not let them know that they are dealing with a different rulebook. it's cruel, in fact.

as to the father-dynamics, my guess is that they are so entrenched, and serve to fill some need for dad, that you won't see any movement away from where they are now. it will take some major disaster to shake the man, and that may not be enough.

just take care of you and your kids. this does not sound like a good environment for either you or them. if your baby turns out to be on the spectrum, you'll have plenty of time as she grows up to learn how to deal with her. it's a lot easier to deal with someone when you know them as well as a mother does her baby. all i can advise is read a lot (this board is useful, as you'll see all kinds at all stages here) and then don't overcompensate for your daughter. if she's "a bit different" work with her strengths. if she's more than that, be sure she knows what's going on in an age-appropriate manner. she'll be ok, as she has a mom who's not in delusion-land.

Hi Grace, this is awful

It's really important to be evaluated but my Mum never took me to the doctor's when I was little either for the same reason because she didn't want me to be labelled. It's pointless in the end though because people frequently label me as weird so why not be labelled with AS?

If the evaluation is finished now I think it's really important that you and your husband tell your stepson because, as you say, it's only a matter of time until he finds out from somebody else and then he will probably resent you all for not telling him.

I don't think it's right to send him to any social groups until he has at least some understanding of what is going on.

I hope you can move forward with this,

Sam x

My ex was a lot like that with his son... there is a reason he's my ex. I just couldn't sit back and watch that poor kid suffer any longer, and them not bothering to look for resources to help him. It was ridiculous.

For a long time, he told me he just had differences in learning, but he had this weighted vest thing. I didn't understand why he needed it for learning, but believe what most people say, so didn't question it a lot either.

After seeing his son in action for quite a while, I finally made an appointment without my ex's knowledge. Shortly after that, I left. Well, the appointment was made, so my ex had to go to it, and he called me that night and said "thank you" and told me his son was officially diagnosed. Unfortunately, I doubt they ever got him any help of any sort... I'm glad I'm not there to see it, to have to witness it anymore, and to have to deal with the frustration of seemingly being the only one who realized how much help he needed.... but at the same time, I wonder from time to time what's happening to him now.

But I have my hands full as it is. I have my own child who does need help, and myself as well, so I think it worked out for the better in the long run. I have time to focus on my son, and work with him... have learned a lot to help with my NT (so far) daughter as well. It's nice to not feel like I have a doorstop in front of me, keeping me from helping ALL of the children who need it.

I'm so sorry your husband doesn't seem to be listening, but if you tell him that it is in his son's best interest to know of his diagnosis, then he can recieve the proper coping mechanisms, such as visits with an OT and social skills training. If steps aren't made now then he could possibly have a very hard time when he's older. I don't see so much an issue with the interest in electrical outlets (if it makes him happy, then why not? such an interest could lead to a successful career as an electrical engineer, for example.), but his social behavior seems to be the defining factor here.

Even if your husband doesn't want to tell him of his diagnosis, he should at least tell the school. That way, the teachers will support him in whatever ways necessary, thus making his time easier and the adjustment to adolescence and adulthood much smoother. So persuade him however you can! Best of luck!

"Doesn't want him labeled"?? LABELED??! !???

Good heavens, if the boy were diabetic, would dear old Dad refuse to get a glucose meter or insulin because he "doesn't want him labeled"? If the boy were blind, would Daddy refuse to tell him that some people are sighted because he "doesn't want him labeled"??

Look, I grew up a good many decades before this "label" even existed. My life was Hell largely because I knew I was different, and the other kids knew I was different, but nobody knew why I was different. The others concluded that I was different because I was stupid, or possibly crazy - all I knew was that there was something wrong with me, and there wasn't a damned thing I could do about it.

Refusing to "label" the boy won't make his difficulties go away. If he's severely NVLD, mainstreaming him abruptly at the beginning of junior high school, with no therapy and no understanding, is the worst possible thing the man could do, and may verge on child abuse. Feel free to let him know I said so.

best thing I ever did was get my kids labeled. on NLD, one ADHD. now they get help in school instead of being labeled "troublemakers".

there is no way to avoid labels. you either give a child one to work with, or let his/her peers label him weirdo, freak, ret*d... and kids can usually sense they're different so they take those horrible labels to heart, while their parents tell them they're fine instead of helping them understand how they're different.

I never felt fine unless I was hanging out with the other freaks. I knew I was not like the popular kids. school was a horrifying experience for me. my son did not do fine before he was assessed. he was a mess. my ex still thinks it's nothing to worry about, so hasn't learned anything about interacting with or coaching my son or giving him opportunities to socialize with people with common interests. it really concerns me. my son is 13 and I think it's really important for him to understand how his brain works. we've talked about stimming, obsessing, melt-downs, depression, and the challenge of figuring out how someone is feeling by their expression, as well as the more mainstream topics of sex, body hair, and stinky feet. we've also dissected conversations he's had with other people where he was annoyed, to work on identifying his own feelings and consider the other person's motives might have been harmless even though they annoyed him, and how to find out what they really want as well as be able to tell them what he needs.

I don't know how long it will take to sink in, so I'll keep talking to him about it. I'm pretty sure he won't be ready to be on his own at 18.

Grace09,

Your being tall doesn't mean he should feel better, it means he WILL feel WORSE! And NO, there isn't some law or expectation that kids sit in back. In fact, the idiot car makers make some cars SO small that the rear seat is all but unusable for the smallest kid. They often put three seatbelts there but have VERY limited legroom for 2 kids, and even WORSE for a third.

So now you are heading towards a FOURTH!?!? YIKES!! !! !

And I don't know if it is normal, or he has the same, but I have a tender spot on either side that starts about elbow height and goes down several inches on either side. If anyone pushes me there I get AGRESSIVE! On the last plane flight I had I almost hit someone there with enough force that he might have remembered me ALL WEEK! He is just lucky he didn't hit me any harder, etc.... I am NORMALLY very PASSIVE! Maybe your stepson had the same problem. If so, I can certainly understand it.

Your stepson sounds MFA or maybe HFA. He does NOT sound AS OR NVLD. As for the belief that is is X linked, that is likely due to the MISTAKEN belief that it is so much more prevalent in boys, and that it is recessive. If that were true, MORE boys would be affected, and most girls that are affected WOULDN'T be. I say that because their fathers would be profoundly affected because males would have no protection against it. Still, your new child has a good chance of not having autism.

It is odd that his father went to MIT and got straight As. He doesn't sound too bright. I wish your new child good luck.

Well, let's get one thing straight.

Your husband HAS labelled him, even though he likes to think that he didn't.

He labelled him as soon as he took him to the psychologist. He continues to label him by putting him in LD schools. He continues to label him when he doesn't discipline him as much as he would a "normal" child.

So, technically the boy is receiving "help". Undirected help, but still help. He is also being cut some significant slack by his father and bio mother.

NO help would be if his dad were to put him in regular ed, put him on a diet, take away his video games, and tell him to stop being so weird and go outside to make some friends.

Now, this approach probably won't work, as this boy seems to be a clear case of HFA + NVLD (spoke a bit too late to qualify for AS).

But at the same time, I don't know how much EXTRA help + current coddling will help the situation. As a general rule with the young adult ASD people that I've met, the less formal assistance they received, the more successful they are in life. And I've never heard of a person with HFA/AS thriving under a coddling situation. With children like your step-son, it's kind of a lose-lose situation.

Bloody hell, Grace. I really can't believe your husband is being this obtuse about his son's diagnosis. If a child is diagnosed with NVLD or AS and has very few problems, I can understand (maybe) taking the "We don't want to label them" approach, but if a child has problems due to NVLD or AS, telling them is necessary. Teachers too.

I have NVLD myself, and I didn't know that until rather recently; my parents did, but they didn't want to tell me. I spent most of my life wondering why I was perceived as "socially awkward," had visual-spatial problems, etc. I eventually ended up talking to the Widow of a family friend (who was a well-known Child psychologist in my home state) who mentioned that her husband had diagnosed me with atypical autism, and later, NVLD when I was around 3 years old.

NVLD is generally thought to be the result of right hemisphere brain damage (which is why it's somewhat common in people with CP) and can be confused for AS pretty easily; I know some clinicians will diagnose with AS or HFA because the child gets more services than if diagnosed with NLD. If your child didn't have any brain damage at birth, he probably doesn't have NVLD.

My parents told me about the cerebral palsy, dyslexia, dysgraphia, etc, but not about the NLD/atypical autism.

If he's going to learn coping skills and social skills, someone is going to have to tell him what's going on; he's only being harmed by not knowing and not receiving appropriate help.

Wow Grace, your in a tough situation but I think you need to start looking at it differently. I don't think at this stage you are in a position to help this child as it sounds like while you are in a parenting role, you do not have the authority to get on with it. The whole yours, mine and ours situation is not working. You need help. My advice is find a therapist for yourself, preferably one who understands your stepsons situation, and work out how you can survive and improve what's going on. Your worried about your future and quite rightly. You need to find a way to create a functional family and you need to be strong. Doing it on your own will be terribly hard. You need help and if you can get it all your children will benefit.

Good luck and be strong. I'm sure it can get better.

Revealing a diagnosis to a child has its advantages (particularly for getting support services), but it also has its disadvantages. I for one am extremely glad that I was not diagnosed with AS in my childhood. I honestly don't think I would have turned out nearly as self-confident and self-sufficient as I am now.

My AS traits are there but now they are very mild. I was definitely unusual, bullied, had few or no friends my age, some sensory problems... However, my parents were completely supportive of me being different, holding up my musical talent and high grades as evidence that being different was okay.

I definitely did not fit in, but it really didn't bother me very much. If the child isn't bothered by the fact that he's a bit different, then there really isn't much point in telling him. It's ultimately about how he feels and how he is doing, not how you think he should be feeling or doing. By normal standards I had "social problems," but I grew into the world in high school. I'm so glad that I was afforded the opportunity to do so on my terms and at my pace.

Now, I do think that the father should at least tell the school if he's having difficulty with grades. Junior high school just sucks, plain and simple. There's not much you can do to make that transition easier. Just be supportive of him, help him foster his confidence, and have faith.