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Sensory & social issues in 13yob -- HFA? Asperger's? RAD? PDD?


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We went to a reception yesterday, and my 13yo nephew Sam did NOT want to be in the pictures. He refused, even after coaxing by his dad and uncles and cousins. He sat in a chair across the room, visibly upset, while the rest of us posed for pictures. This issue of not wanting to be in pictures has been there for some time now, but has become bigger over the past couple of years.

 

There have always been issues of some kind with this child. His parents began seeking a diagnosis for him when he was about 7yo, and while the official diagnosis has been "inconclusive", the list of possible diagnoses have ranged from ODD to ADHD to Asperger's to I don't know what else. I'd just like to throw this out there for those who have experience with these and see if any of this sounds familiar to you.

 

Even as an infant, this child seemed "nervous"; by that I mean that he "quivered" a lot -- not sure how to describe it -- but his entire body would tremble. He was never a cuddly baby, and seemed to cry ALL the time, a high-pitched, squeaky cry. Now, while he is certainly not clingy, he is fairly affectionate, and he likes to give hugs to family members he is particularly fond of.

 

His language acquisition was pretty normal (although for the first few years, it was hard to understand what he was saying), and now he is quite a talker. He usually has no trouble making eye contact with people -- unless he is being reprimanded for something, during which time he stares at the ground. Usually, though, he talks and talks and talks -- usually about action sequences in video games or movies or sporting events -- and even when people lose interest, he follows them around, jabbering on and on. He talks really fast, and stutters a lot. He has an odd stutter, though. He repeats parts of words; it's hard to describe, but he will say a word and then take a quick breath and repeat the last syllable or the final consonant. For example, yesterday he was telling me about some movie that he had seen, and he said something like, "The man kicked the robber [breath] -ber and then he fell down [breath] -n."

 

He used to have 'obsessions' that changed periodically. For a time, he was obsessed with a particular brand of action figures. Later, he was obsessed with animals & on trips to the library, he would check out nothing but non-fiction animal fact books. After that, his obsession was Lego. Once he reached puberty, he seemed to become less focused on his obsessions, and I don't think he has one at present.

 

When he was younger, he would get very upset if there was an unexpected change in plans (ANY break from his expected routine), or when it was time to leave one place to go to another (such as going home from the grandparents' house). His parents would try to give him advnce notice if anything out of the ordinary was scheduled, such as a doctor's appointment or a trip to the store; and when visiting the grandparents or other friend or relative, they would try to give him ample warning well in advance of time to go home. Still, he would have a meltdown when it was time to go home from a visit, or when something unexpected happened necessitating a change in plans.

 

He also has sensory issues and irrational fears. For example, from early on, he had such an aversion to peas & beans that he would gag when he saw them on his plate. He was once offered some jelly beans by his grandfather, and refused to try them because they were 'beans'. Another example: he has always been terrified by anyone dressed in a costume (Chuck E. Cheese, clowns, etc.). Once when he was about 3 or 4 yo, we all went to the circus, and he became so upset at the thought that he might see a clown at the circus that he threw up in the car on the way there. Yet another example: he cannot tolerate the 'feel' of crayons, and he has always refused to color pictures.

 

Academically, he is very capable in most areas (except math, which he hates). He went to ps for grades K-2, then was homeschooled for grades 3-5, then returned to ps for grades 6-7, and this year is being homeschooled again (8th grade). At school, he would do assignments, but didn't bother to turn them in. He has very poor fine motor skills, and HATES to write anything. His handwriting is pretty much illegible. He enjoys science and he likes to read, but he enjoys action stories that are well below his reading level, and he loves to play video and computer games and watch television. He has a very active imagination, and seems to be able to visualize things (and talk about them) to the point that you aren't sure if he's just pretending or if he's actually hallucinating.

 

As far as social skills are concerned, he has few friends, mostly kids that are younger than he is. He has never seemed to be able to interact appropriately with other children; the older he gets, the worse it seems to get. Even as a toddler & preschooler, he was a whiner and a tattletale, and he often accused the other kids of mistreating him or excluding him, when in reality, it didn't happen. At school, other kids teased him and called him names (they say he's 'gay'), and he became angy and acted out. He seems not to be able to control his impulses to lash out at those who tease him, and that just brings about more teasing. He seems to act on impulse and to have little, if any, ability to reason through what the consequences of his actions might be.

 

I won't go into a lot about his immediate family situation, but just a thumbnail sketch so you know a little bit about that: The mother currently has multiple health issues (emotional/mental/physical), and within the past year, has become almost an invalid. The father does what he can, but is completely overwhelmed with working AND running the household because of the mother's situation.

 

So, what say you? In your experience, does this sound like a child with Asperger's? HFA? Or maybe RAD? Or is this mainly environmental? The extended family wants SO MUCH to help this child! He is the oldest of three, and one of his younger siblings is exhibiting similar signs, but not anywhere nearly as severe. He seems to be crying out for attention and affection!

Edited by ereks mom
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Not sure but I would suggest a good evaluation with a developmental pediatrician, a neurologist, and a psychiatrist. Likely it will take all 3 to help figure this out. They might also do some genetic testing if mom and a sibling are similar (some genetic disorders can manifest this way).

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The difficulty here is that you will have to get the parents to work with you, and if they are in denial or very self absorbed, they may not be willing to do more than they have already. It took years for my parents to be willing to pursue more diagnosis and help for my brother after being told repeatedly by others that there was not definative diagnosis.

 

:grouphug: to you for wanting to help this child out. He definately sounds like he needs help and Ottakee has suggested great places to start. It won't be easy finding out all the layers, and will take loads of time and lots of effort to help him.

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Not sure but I would suggest a good evaluation with a developmental pediatrician, a neurologist, and a psychiatrist. Likely it will take all 3 to help figure this out. They might also do some genetic testing if mom and a sibling are similar (some genetic disorders can manifest this way).

 

 

:iagree:

 

I would also add a speech therapist and occupational therapist to the list.

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Sounds autistic spectrum to me. The problem i speech, OT, and other outside professionals will be able to accomplish very little if the parents aren't on board. Parents are the key to overcoming an ASD because interventions must be consistent. I would go so far as to say that is why the social behaviors are worse now than when he was young.

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Parents are the key to overcoming an ASD because interventions must be consistent. I would go so far as to say that is why the social behaviors are worse now than when he was young.

 

Consistency is the biggest problem the parents have. Mom is sickly and dad is overwhelmed, so not much in this child's life is consistent. I almost wish dh & I could take him in ourselves.

Edited by ereks mom
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He sounds like an older combination of my two oldest sons. I would say he certainly resembles a high functioning Aspie and has definitel SPD issues. I second the recommendations of all the other posters for the kinds of therapy he needs.

 

As far as why he may have stopped various therapies I just want to throw in some sympathy for the parents. If they are like my family, we have had consistently less insurance coverage and varying income of the last ten years. I can't get or afford regular therapy for any of my kids. It's just not possible. They may be at a point (at age 13) where they are doing some things that work for them and their son and feel that he needs to mature more and will grow into some skill sets. From your brief descriptions it doesn't sound like they are unaware of his issues (he had several kinds of therapies in the past). One of the realities as the SN kids get older is that there are only so many dollars and hours in the day available and therapies become less productive as they get older. They sound as if they are trying to find a balance that works for their son. I could be wrong.

 

Having been through the piles of testing, therapy, and treatments that took a huge bite out of our one income family budget I know how it feels to throw money at something and see nothing come of it - only months later to realize that the child would accomplish the task on their own if given a loving, supportive and stimulating environment. I am doing some sensory therapies at home with my boys and am starting (today!) a social skills group for my oldest undiagnosed Aspie (at a local organization) but am not taking my middle son to the ps for language therapy and OT because the quality of services he receives is just not helping him! I feel that I can do more at home. My youngest has a speech delay and is hard to understand but I am confident that he is understanding our speech and feel sure that in the next year or two he will be talking non-stop just like his two older brothers. Going through another round of testing only to be offered sub-standard services (if we even qualify with the stricter budget-regulated guidelines today) just seems like a huge waste of energy and effort.

 

When you say that you wish you could have raised your nephew I wonder just how aware you are of all the things his parents have done for him. If you aren't really close you may not know all of the things they have tried. Noone in my family does - even my mother who lives with us just doesn't know everything we do on a daily basis. The disappointments faced, the sacrifices made to get kids to therapy, the struggles to help the child have self-esteem in the face of not being "normal". Your nephew sounds like a lovely child who just has some issues, some may or may not be overcome before he's an adult but these issues don't mean that he won't have a happy and successful life. To be honest, I have resisted being in family pictures before as well - to me that doesn't seem like such an odd thing to make a big deal over. And thinking about the teenagers I know...here is a teenager who actually wants to talk to adult family members? How many 13 year olds fit that bill? lol

 

You know what they say, until you've walked a mile in someone else's shoes... Maybe have a conversation with the mom or dad about the son and offer to be a support system, offer to drive him to therapy if they need help but I urge you to be careful about sounding judgmental of their efforts. Parenting special needs children is an emotionally, physically and financially draining experience. We already get so much judgement from the outside, we need all the support we can get.

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He sounds like an older combination of my two oldest sons. I would say he certainly resembles a high functioning Aspie and has definitel SPD issues. I second the recommendations of all the other posters for the kinds of therapy he needs.

 

As far as why he may have stopped various therapies I just want to throw in some sympathy for the parents. If they are like my family, we have had consistently less insurance coverage and varying income of the last ten years. I can't get or afford regular therapy for any of my kids. It's just not possible. They may be at a point (at age 13) where they are doing some things that work for them and their son and feel that he needs to mature more and will grow into some skill sets. From your brief descriptions it doesn't sound like they are unaware of his issues (he had several kinds of therapies in the past). One of the realities as the SN kids get older is that there are only so many dollars and hours in the day available and therapies become less productive as they get older. They sound as if they are trying to find a balance that works for their son. I could be wrong.

 

Having been through the piles of testing, therapy, and treatments that took a huge bite out of our one income family budget I know how it feels to throw money at something and see nothing come of it - only months later to realize that the child would accomplish the task on their own if given a loving, supportive and stimulating environment. I am doing some sensory therapies at home with my boys and am starting (today!) a social skills group for my oldest undiagnosed Aspie (at a local organization) but am not taking my middle son to the ps for language therapy and OT because the quality of services he receives is just not helping him! I feel that I can do more at home. My youngest has a speech delay and is hard to understand but I am confident that he is understanding our speech and feel sure that in the next year or two he will be talking non-stop just like his two older brothers. Going through another round of testing only to be offered sub-standard services (if we even qualify with the stricter budget-regulated guidelines today) just seems like a huge waste of energy and effort.

 

When you say that you wish you could have raised your nephew I wonder just how aware you are of all the things his parents have done for him. If you aren't really close you may not know all of the things they have tried. Noone in my family does - even my mother who lives with us just doesn't know everything we do on a daily basis. The disappointments faced, the sacrifices made to get kids to therapy, the struggles to help the child have self-esteem in the face of not being "normal". Your nephew sounds like a lovely child who just has some issues, some may or may not be overcome before he's an adult but these issues don't mean that he won't have a happy and successful life. To be honest, I have resisted being in family pictures before as well - to me that doesn't seem like such an odd thing to make a big deal over. And thinking about the teenagers I know...here is a teenager who actually wants to talk to adult family members? How many 13 year olds fit that bill? lol

 

You know what they say, until you've walked a mile in someone else's shoes... Maybe have a conversation with the mom or dad about the son and offer to be a support system, offer to drive him to therapy if they need help but I urge you to be careful about sounding judgmental of their efforts. Parenting special needs children is an emotionally, physically and financially draining experience. We already get so much judgement from the outside, we need all the support we can get.

 

The parents stopped therapies for various reasons -- mostly because the mom's health issues have taken top priority and because they decided that since they were homeschooling, they wouldn't need outside help. Income has not been an issue; dad has great insurance through his work, so everything has been covered.

 

They have kept us informed of everything they've tried, and mom calls me and/or dh regularly with reports of what is going on with them. We probably know more about the situation than anyone else in the family, and on many occasions we have offered help with anything they need. The rest of the family doesn't take the time to understand, but dh & I have always been very supportive of them, so they gravitate toward us.

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If the family feels that close to you, then I feel you need to approach them and ask how to help. Can you school that child? Take him to therapies for them? Take him to medical appts and such so he can get new referrals? If he just needs someone to follow thru then are you willing to be the person that follows thru? Otherwise, if the family can't/won't follow thru, then all you can do is watch and pray.

 

My dd was born with several health issues and for her first year we had over 150 medical appts just for her after she came home from the hospital. Trying to meet her needs and the needs of my son with special needs was very overwhelming indeed. I would have loved it if someone could have taken him to his therapies several times a week (or even once a week) or picked him up, or taken my dd to her therapy appts. I begged my parents to read his history and science books to him or go thru flash cards while he was visiting so he wouldn't fall behind more, but they refused. I couldn't keep up with dinner,laundry, or even grocery shopping. It was a very long, stressful time and unfortunately I have some very resentful feelings from it.

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He could also have Nonverbal Learning Disorder, which is similar to Asperger's.

 

I will second this one!! My youngest is NVLD and the speech pattern, the dislike of math, the varying obsessions, the crying issue as a baby, the hugging now, the lack of impulse control, the anxiety...I could go on and on..:)

 

I was never so happy in my life to receive a label! :)

 

It took some neuropsyc appointments to finally pin down the DX and we went from Aspie to PDD to "we are not sure what is going on" to emotionally disturbed!

 

Here are some links on NVLD http://www.ldonline.org/article/6114

http://www.spinabifidasupport.com/nvldsyndrome.htm

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