Asperger family

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Hello all,

I just joined this group because I think I have an explanation to the past ten years of confusion and frustration as well as some bliss sprinkled in, wrapped up in laughter and tears. I am writing here because no one else will understand or will try to judge or explain it away. I think here people will understand.

You see, it seems I married a man with Aspergers but had no idea. I just thought he was different. After a while he seemed to throw sudden temper tantrums over simple things, or what seemed quite simple and I would not understand what was wrong. We've made it barely and I was getting ready to call it quits because I am emotionally drained and feel like it will never "get better". He acts like such a jerk sometimes and then a minute later after he feels better, he's sweet again leaving me fuming and issues unresolved. It is so boring for him to talk about things and he'll just say he's feeling better but not ask me how I am or how my day was. I have had to train him and give him examples then I get mad because he'll say EXACTLY what I gave him as an example to say; like I asked him to may be sometimes respond to me asking how his day was with , "and how was your day honey?" and he'll ask exactly that...it's funny and cute but also infuriating when you don't know why. I love him and I am going to buy a work book for AS NT couples and hopefully we'll both pull through because we have TWO special needs kids.

My cousin on my father's side has low-function autism. I hope I don't say things incorrectly or offend anyone but I am new to this world so I am a bit out of the know, if you know what I mean. So my cousin is not able to care for himself and when he was a kid back in the early 80s they did not know how to help him so they tried to teach him sign language but it was a disaster. He takes meds now to stay calm but he is a full grown man and can't live on his own.

My kids were diagnosed with a Urea Cycle Disorder (UCD) called Citrullinemia at birth through a newborn screen. My oldest is my DD and she was vaccinated until six months. She had severe reactions every time but after this one she started shaking her head weird and getting spacy looks on her face and wouldn't respond for a minute. So we thought may be it's the vaccine thing or allergic reaction due to the UCD so she has been on homeopathy, nutritional supplements, and healthy foods and seems to be doing okay. From the beginning she did odd things that I can't believe I did not attribute to Austims or Aspergers but in my heart of hearts I knew and worked extra hard to not let her get too stuck in her world so I'd read stories and lots of physical affection and routines. She would do odd things like line up multicolored bowling pins on the coffee table at age one. She'd line them up and if one fell down she'd get extreamly aggrivated and have a melt down. Then she'd say 'ee ee ee' and bounce sitting on the floor and bounce her whole upper body up and down up and down. She also used to get books to look at the pictures and pretend to read and just mumble I don't know what, a pretend language and spin in circles for hours. I thought that was odd and did not see other kids doing it but she is so happy when she does this so I never discouraged it. She made up her own words like flower was 'shudu' and kiss was 'sicky'. Now she is turning five and she just can't seem to figure out the social scene very well. She knows her words and yet she doesn't speak in sentences very fluidly to express her ideas. For potty training it's like she forgets what to do when the urges come so she sits down and bounces back and forth trying to keep it in until it comes out alone and covers her eyes. We did not consider a developmental disorder and thought she was just being stubborn (I know I am stupid) so we tried different techniques that other parents tried but for her it never worked so we just remind her often and that helps, especially when I reassure her that it is normal to have to go. She is terrified if the water in the toilet is blue from those toilet cleaner tabs for the tank. She has always paniked in different situations and some things with certain lights and sounds used to terrify her, like shear terror and people would look at me so weird like what is wrong with your kid. When toy cows would do a low slow mooooo she'd freak out. She still spins and now it's through the grocery store and has no clue that she is blocking people, like she's not aware of them until we point it out to her.

She approaches other kids but then she'll say stuff from cartoons. I have taught her to say, "hello my name is.....what's your name?" Then after that she is lost and starts to say cartoon things. So now I told her to ask the kid if they want to play. This after two kids made fun of her and laughed at her at the playground. I wanted to smack those kids or scold the parents but that is how life is so the next morning after she woke up in tears and told us about her bad dream, other girls had beautiful dresses with lots of colors and they only gave her a sad black dress. Poor baby. I held her for a long time and explained that some people are very nice and others are not and they are scared of people who are different and special like her so don't worry about what they say or do just go away from them. We do homeschool and we are about to start with Oak Meadow's Kindergarten curriculum and it seems to be great for her because there is a lot of learning with the hands and body rather than just intellect. She seems to express herself in color. She is obsessed with flowers. She will go to the park and play for a minute with kids but then lose interest and go searching for flowers to pick. Anywhere we go she has to stop to pick flowers until she has all of them. She even wants us to pull over to pick them. She also seems to have a hard time with sense of time. She gets confused as to when the different meal times are; she calls dinner breakfast and lunch dinner, etc. Also she talks about something from years ago but says "yesterday we had to go to the doctor"....she had a lot of blood tests so she has severe anxiety of doctors and any place that looks like a doctors office, even public bathrooms.

My son is three and he is obssessed with toy cars. Wheels of anything, big wheels, small wheels, vacume wheels, dishwasher wheels, etc. He shuts down and go curls up in a ball somewhere and just stars off if he is upset or he screams very loudly. He doesn't do a lot of handflapping but speaks opposite. If you ask him if he wants something and he wants it, he'll say no. Or he'll play a game where he asks "what's this"? You answer and he says, "no mommy its ....." but it is what you said. He too plays at the playground and he loves the kids around him but not really interested to go and interact with them. He and his sister will stim off each other and repeat over and over a scene from a cartoon like Dora and Swiper the fox, even if they've only seen it one time, they'll remember. They both repeat and repeat things. At the playground he'll start walking the perimeter of the playground and turn his eyes to the side but keep his head straight. It's a bit odd too. They just don't seem to interact with people like others do but they love the cat. My son will hug strangers but then panic when they look at him weird.

It is an exhausting house but also fun. When the times are good, they're bright, colorfully wonderful memories but when it's hard, it's a dark hell for me because I never ever ever get a break because my husband cannot handle the kids very long. He does well for a while but more than a couple of hours and he's fried.

I am not sure what advantage it will be to have them officially diagnosed. I am thinking about it but first I am thinking to buy a couple of books about being the mom of the house, I feel sometimes like everyone is draining my inner-self but no one is refreshing it...I am not trying to whine but it just feels good to be able to say that. My husband has is obsessions and fears like don't touch his stuff or cleaning and textures, my son has the texture thing and will lose it if his hands are wet after being washed if they aren't dried off right away. He also hates hates hates getting his head washed.

Well thank you so much for letting me share my stories here....I needed that vent....

Peace
Ahada

i was weird as a kid. i stimmed for hours and stuff. watch out for public schools they can be really bad with special needs kids. also there is a parents forum where you can discuss stuff with other parents.

Welcome to Wrong Planet, Ahada.

I am an NT married to an Aspie, too. We just found out he has AS three years ago, when our daughter was diagnosed. My husband also throws tantrums over things that do not make much sense to me. But I know it is his way of venting out. He needs those tantrums in order to calm down. Obviously it took me a while to understand that.

He will get better. With time. But you need to help him. Wait until he is calm in a good mood, and talk to him about how his tantrums make you feel. It might also help that you try to avoid things that make him feel like that. For example, I have noticed when we do not have sex too often he gets mad more easily (hormones, I assume).

My husband rarely asks me how I am, but the difference is I do not care. You need to talk. The faster you get that concept, the better. He will not guess (not even try). Its like that. You will have to live with it. He has left very clear if I want something I need to tell him. I agree in the begining it was really annoying. It felt horrible. But I am used to it now.

Dont feel mad because he says exactly what you gave him as an example. He cannot extrapolate. Feel good because he is making an efford (that is really hard for him). With time he will get better.

Your kids seem to be in the espectrum. Dont be too hard on yourself for not getting the queues earlier. A "psychologist" thought my kid was just being stubborn, and she is supposed to be an specialist. To have them diagnosed have many advantages. At school the dx will make things easier (get help inside the classroom, curricular adjustments, can get strategies for the teacher). And with the proper dx you can get your kids the medical support they will need, like therapy and meds in case they need them.

My husband does not help, either. He just gets confused, anxious, and does not know what to do. All the load goes on me. We have fights about it from time to time, but I know its pointless. I do not think it will ever change. But I love him and accept him the way he is. If you love your husband you should do the same. After all, marriage is about commitment and sacrifices. Being married to him should have his pros or you wouldnt be there, right?

I wish you and your family all the best.

I'd strongly suggest getting diagnoses for your children if they are going to be going to a physical school - getting the special treatment you need, even if it is something as simple as guaranteeing that something will always be the same, means a huge amount.

I was diagnosed (possibly falsely) with social anxiety in high school, and got the accommodation of they were not allowed to place me in a class without one of a specific group of people in it with me. They simplified this to them always needing to place my best friend and me in the same classes (they weren't tracked, but if they had been we would have been at the same level anyways, Also, we changed classes every 6 weeks so that different people would work together). This made a huge difference to me - the one time I was placed in a class without anyone I knew I broke down crying in school despite being 13.

The more that the people who will be working with the children know, the more they can take that into account. They don't necessarily need much, but if something would help, it should be available.

I'm so glad you posted here, because my special interest is genetic disorders, and you gave me a new condition to study!

I'm assuming your kids have type I citrullinemia, because from what I've read type II is adult-onset. It seems like type II is way better researched, unfortunately. Probably more common. It sounds like it falls into the category of metabolic disorders, like PKU and maple syrup urine disease. All those conditions involve something building up in the person's system that damages things, and in this condition it's ammonia.

This study looked at cognitive development in children with urea cycle disorders, including citrullinemia. They split them into complete and partial depending on the severity of their metabolic issue. The complete group (24 kids including 8 with citrullinemia) included 78% with mental retardation, 46% with cerebral palsy, 17% with seizures and 4% cortically blind (severe visual processing disorder). In the complete group all children had been in a coma when first diagnosed, and length of coma was correlated with severity of disability (4 out of 5 with a coma less than three days had normal IQ, compared to 1 out of 11 with a coma of four or more days). Another researcher studied younger siblings of identified patients who'd been diagnosed with complete urea cycle disorders, these children were treated from birth and had no coma, and most had normal IQ, but 1 out of the 3 with citrullinemia were MR.

They said partial urea cycle disorders present later in childhood with cyclical vomiting, hyperactivity, night terrors and personality changes, which may progress to coma. These episodes can be set off by high protein intake or infection (which may mean that vaccines could set it off since they often cause a mild infection). They described one child with partial citrullinemia who had an IQ of 46. The more frequent and severe of episodes they had, the worse their cognitive function.

They also studied heterozygotes (carriers, like you and your husband) and found that they tended to show subtle cognitive difficulties in comparison to non-carrier siblings. They tended to show a greater difference between verbal and performance IQ, with performance IQ being lower (which could indicate nonverbal learning disability, a related condition to Asperger Syndrome).

This study examined 92 kids with urea cycle disorders, with 20% having citrullinemia. This sample was higher functioning than the previous one, probably because this study is a lot more recent and therefore the kids received better treatment. Most common diagnoses were ADHD, MR and learning disabilities, with a few kids having autism. They studied different age groups separately.

Kids under 3 most scored in the low-average range on developmental tests, with only a few showing developmental delays. Motor skills tended to be a relative weakness.

Kids 3-16 years old functioned more poorly (which could mean a decline with age or could be that the infant development tests were less accurate). Those with neonatal onset (complete type) had a 50% chance of having mental retardation, and those with later onset (partial type) had 25% rate of MR. Citrullinemia kids had the lowest scores with 33% being moderately to severely MR, 17% mildly MR, 17% borderline and 33% average IQ. All subtypes showed difficulties in social skills, attention and metacognitive skills, suggesting possible executive dysfunction. (Executive functions involve self-regulation, planning and self control, and are often impaired in ADHD, autism and similar disabilities.) Internalizing and externalizing behavior problems weren't very common, but a few kids had them.

We have been doing much better and time has really just helped. Thought I'd post an update and thank everyone for their comments. Sorry it took so long. The Urea Cycle Disorders are just so rare and each case is unique. It's been said now that mental retardation is not occurring solely due to high ammonia so researchers are trying to find the cause. I still think it is because of enzymes working at a slower pace or not at all. We haven't moved forward with a diagnosis because our doctor doesn't see an issue so I guess we'll just keep working with the kids.

To answer the question about what kind of Citrullinemia: it is type 1, a mild variant but still causes the disease it's only a matter of time.

Thanks again for the support, best wishes to you all!

Hello, just wanted to chime in and let you know that my husband is an Aspie as well, only I have it too. Neither of us knew this until after we were married though, and things started getting really weird, to say the least. We have a 1 year old son, who's also starting to show some signs of autism.

Anyway...I just wanted to encourage you in the fact that my husband is learning how to meet my needs. It feels like it's taking forever, but I think it's more so that I'm just incredibly impatient. One thing that I've noticed is helping a lot is communication. We talk and talk and talk, and often times we have to talk about one thing 10 or 15 times before I see an improvement in that behavior. This is frustrating for me, but totally worth it to both of us. When he does make an effort, I try to swoop in with tons of positive reinforcement, which he's claimed helps him. I guess it's really no different than anyone else trying to learn how to do something that they honestly find very difficult. Encouragement and patience is key. At least for my husband, that seems to be the case. So far though, he's proven to me that he is capable of changing and improving, and he's in a better place than he was even just a few months ago. He's also happier, more independent, and more self confident...which makes me happy. We still have tons and tons of problems to work on, but I do feel like there's hope of getting through them.

On the other hand though, I try to be realistic about what's going to change in the near future, and what might not ever change. For example, my husband is incapable of maintaining the house for the most part. The weight all falls on my shoulders (and I have my own problems too). This is probably not going to improve in the near future. So, being that our family is more important than owning a house...we're going to sell it. Problem solved (well, it will be if we ever find a buyer!) Some day when he's more capable of handling the responsibility of home ownership, maybe we'll buy a new one. Either that, or when we can afford to pay someone to do repairs/yardwork/etc. for us.

I guess my point is that while he's slowly improving and I feel hopeful, it's also helpful to me to be realistic about his limitations.