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

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He didn't have any brain damage at birth. My husband has said his head did grow very fast after he was born. I've tried to point out that autism is not some horrible label, there are some amazing people out there with autism. To me, it seems more of a personality difference, there were always quirky kids when I went to school. You read about Bill Gates, and Steven Spielberg said he was diagnosed with autism as an adult. I've always felt, from what I have read, that HFA fits him better, but I really don't know. You can look at the DSM criteria and he fits it to a T.

My husband has said that they always thought their son would grow out of it and catch up. That he was just a late bloomer. I know his mother has totally dismissed the psycho-educational evaluation. She won't believe it. she said the psychologist doesn't know what she is talking about and pointed out some typos on the report as proof that the psychologist is inept.

I have told my husband, if our daughter is on the spectrum, she's going to get early intervention. I refuse to pretend. I recovered from a traumatic brain injury at 15 and I needed all the help I could get.

Thank you. I have been lurking on this site for over a year. I mentioned it to my husband a week ago, said there was a very interesting site called Wrong Planet, but you know, I feel scared when I was mentioning it. He really doesn't want anything about autism brought up, it's just I saw there was a section on the message board for parents. I thought maybe if he could find other parents going through the same thing it might be helpful but I doubt he'll ever visit.

I also felt very embarrassed and ashamed after I sent this post. Being around my husband has made me feel that autism is not something you talk about, are open about, it is something shameful to hide. And I was worried I would be bashed here, as I am not the mother, but the stepmom and what business is it of mine? Happy now because I feel so much support here.

I have wanted to talk with people in the know for ages. I have considered going to a therapist but I would prefer to find someone who maybe has some knowledge of spectrum issues and can help teach me what is and is not possible.

A high school football player came to the door the other day selling these discount cards to raise money for the team. I bought one and it had the football schedule on one side and I suggested to my husband, maybe we can go (with my stepson) as it will be his school in 2 years. He said, he will never be a football player, and when he tried soccer it was painful, he couldn't understand the game, kicked the ball the wrong way and just mentioning sports brought up all these past painful experiences. I said "I wasn't saying he needed to play football, I was just thinking he can see the other kids, the high school kids, it will be his school in 2 years, and there are other things, like marching band, flags, etc, maybe he would like".

He said "he wouldn't even notice the other kids and what they are wearing and how they are acting. He would focus on things like the electronic score board".

After my car accident at 15, and having TBI, my mother let me read the medical reports, nothing was hidden. He's 13, but a very immature 13, so I don't know when is the right time for him to be told and I know it's none of my business, I would never tell him myself as he is not my child but I sorta feel he should have been told years ago, but he only had the formal diagnosis a year ago because he had to switch schools.

It's just actually painful for me because I know it bothers him, the social issues. I don't think he understands, I mean how can he, no one has told him anything. He'll play with my son, but if a friend comes over who is my son's age, they go off and leave him. Not on purpose, they just drift off together, it's just 8 yr old boys want to play with 8 yr old boys for the most part. Ben prefers to play with younger kids, or to be with adults, he doesn't seek out friends his age. His mother arranges "playdates" and she calls them "playdates" which I think is infantilizing for a 13 yr old. He said to me once he had a playdate, and I said 'let's call it a get-together'. His mother totally treats him like he's 5 and she will be totally fine is he ends up living with her the rest of his life.

But he talks about getting married, having a family and kids. He wants that.

As far as middle school. Yes, I remember middle school sucks! but he is going to a middle school where there are only 10 kids total in grade 7 and 10 kids in grade 8, so it won't be a typical middle school, fitting in, type of agony. And it's an LD school. His last school was the same except smaller, and it was mostly boys and we've had some over and they are all a little different. He won't be walking past clicks of girls and groups of jocks and entering a crowded lunch room. That will happen in 2 years when he transitions into the local high school.

As far as knowing he's different, he will have meltdowns and start stomping around and shouting. He says things like "why am I so different! No one likes me! Why am I weird!" and his dad will reassure him that all his thoughts are unfounded. His dad will say "people do like you, they don't think you're weird" and his son will say "No Dad, they don't like me, I know they don't like me, people think I'm weird, why am I so weird!" and I usually will shuttle my kids out to the local mall - it's only happened a few times. It totally confuses my kids and I can't say anything except that he's a teenager and teenagers sometimes get emotional.

Grace, it's definitely a tough situation. It sounds like him knowing would help him cope.

Is it possible that your husband sees too much of himself in his son for his own comfort? He seems to have an instinct for knowing how to handle his son (even if that instinct won't be enough in the long run). Is it possible that your husband isn't really in denial about his son so much as he is in denial about himself?

He definitely, definitely needs to know. Just having a name for something can make you feel way better than if you are constantly worrying why you're weird and damaged and thinking maybe it is your fault.

OT @ mechanicalgirl: I seriously love your signature line.

MFA is a term some here coined for someone that is not LFA, but not quite HFA, Mid-functioning-autism. It isn't really a term a psychiatrist would use. As for the gap between PIQ and VIQ, AS people generally have a higher VIQ, and HFA generally have a higher PIQ. Psychiatrists are SUPPOSED to exclude AS if it doesn't fit. Your stepson has a few problems, and spoke late, so he shouldn't be AS. He DOES sound autistic though. HFA generally means they can get by and have an IQ(COMPOSITE) over, I believe, about 70. If he doesn't fall into things properly, THEN it is supposed to be PDD-NOS. Of course, some will fall into NVLD. Frankly though, I think autism fits him better. And you DID say he was first diagnosed with it.

I will say I am not a psychiatrist, but this fits wiith the DSM and what many here will tell you.

SAME HERE!

MANY with AS, and I believe autism in general, have a head that grows faster earlier. I was that way. By they time they're adults, the average difference is only 2%! That is only about 1.12cm circumference. So it wouldn't be noticeable. MINE is about 1.25cm larger. When I was a little kid, I had trouble getting shirts over my head.

BTW it is not as obvious with girls. HECK, some things they HATE in autistic boys are considered NORMAL for girls.

Yes, we get kind of an easier time of it, sometimes. A girl alone is perceived as shy; a boy is a "dangerous loner"... socially clumsy girls can even get "adopted" as a sort of project by the super-NTs (the social geniuses) of the class; that has happened to me twice already, once by a girl who actually cared, though that was past college when I had learned how to take showers and keep myself just odd and inoffensive rather than a smelly, stringy-haired teen who accidentally said offensive things more often than not.

Well, I will give you an example:

Demanding Girl? NORMAL
Emotional Girl? NORMAL
Clumsy? HEY, no problem
SHY? NO problem
lack of coordination? no problem
lack of strength? no problem
odd habits? They can even be endearing
Bad at math? NORMAL

If that were a boy, PITY HIM!

As for socially clumsy girls, even THEY have less trouble.

My husband will say things like, when he was a boy he was interested in everything his dad was doing but his son is interested in nothing he is doing, ever. He said his son has never wanted to be like his dad, as he did. In fact, his son has sorta latched onto my profession, nursing, and says he wants to be a nurse and now he has all these seasons of House and that's all he watches. He wanted to buy some scrubs and did in a color I own, royal blue, which is not the typical color the male nurses wear. On his bedroom door, he has pasted up a sign with a Dr. before his name and "head of oncology" under. Everything has become about medicine now.

I have looked for traits, but my husband gets social subtleties, shows empathy, so I don't know.

When he was 4, a doctor did give him the diagnosis of PDD-NOS but my husband said he did it in after 5 minutes of looking at him, so my husband dismissed the diagnosis. He wasn't diagnosed until a year ago as NVLD and only because he had to be for an LD school. The sad thing is that I really liked the school, went on a tour, and the fact that they required a psychoeducational made me feel they were more serious. They had a FT speech therapist on board and the school went up through 12th grade.

They ended up sending him to a school that says it is for kids with LDs and for kids who just want a small learning environment, they require no testing. Not that it's a bad school, I just think a speech therapist would do him wonders. He talks very loud, his speech goes up and down in a sing-song way, and he interrupts, takes over conversations, goes on about things people aren't interested in etc.

His parents plan on integrating him into the local high school in 2 years where there are 1400 kids. I think his VIQ is higher than his PIQ. I remember his PIQ was pretty low. Can't remember the scores but the overall full-scale IQ was 89. He has an insane memory, he'll remember exact details of what he was doing on certain dates down to what I was wearing. He'll often say "don't you remember..?" and I'll say "no that was a year ago!" (I also have a bad memory I think from the TBI, which I'll remind him of, I have tried to talk about my TBI openly so he doesn't think being LD is a bad thing) but he's not one of these autistic kids who is getting straight A's, it's a struggle. I have sat down and tried to explain math problems to him but he just gets frustrated. He doesn't get math, not at all. Logic makes no sense to him.

He got in an argument with a kid at the pool a year ago. He said "I don't know what's wrong with him, I think he has autism". I said "No he has Down's Syndrome" and the boy seemed confused as to what upset my stepson and apologized very sweetly. But I wondered where he knew the word autism from as his parents have never mentioned it to him, but interestingly enough, his mom works as a teaching aide in a special education classroom at a local elementary school. I always thought is was strange that she works with special ed kids, yet she won't accept her son's diagnosis. My husband thinks she works with special ed because when she goes home, her son doesn't look so off. After a day working with kids with Down's and MR, yes my stepson looks perfectly normal. His disabilities are very subtle in comparison.

She won't be friends with a mom who has mainstream kids. Her friend's kid all have serious special needs. She refuses to meet my kids or even say hi. She has told my stepson he can never mention my kids names to her. I have never spoken with her because she refuses to speak to me. My husband and her had been divorced for years when I met him, so I never did anything to cause that breakup. My kids, and this makes me feel bad, they don't understand why she won't talk to them. They are 6 and 8, and my son has run outside to meet her and she won't actually speak to him or acknowledge his presence.

I have attended school events of my stepson's and she treats me like I am invisible. When I first met my stepson he said "my mother never wants to meet you and never wants your name mentioned in her house".

My husband has met my ex-husband, and spoken with him, like normal people do. I know it's hard, with ex's and mixed families, but I really feel often like I am in the Twilight Zone.